First I'll have you know that the doctor did keep me on the Ativan & Valium as the only oral meds I can take since we know those are not the cause of the intestinal problems. I am glad about that because it helps my nerves and anxiety so much.
However, at the end of day 3 of no oral medications I am still no better. They have run some tests and aren't able to figure out the cause of the "frequent bathroom visits". I give samples and they run tests and tomorrow I will give some blood as well. All of this is very draining and makes me feel weak and tired. I think Saturday will mark 2 solid weeks of this problem and I am so ready to get past it!
Just praying that they can find some answers soon. Oh, & I can't remember if I wrote this earlier but the doctor moved my appt. up to Friday at 3:00 so hopefully she can help shed some light on all of this. As for now I'm just praying for the strength to get through the IV treatments every day. Tonight I've run a little bit of fever so I'm wondering if I somehow picked up a bacterial or viral infection from my fun visit to the ER where germs love to hang out!
I'm not going to pretend that I'm not frustrated because I am. But, I always try and remember that things could be so much worse. Yes I feel like crap right now, but I see people every day who feel worse. I try very hard to maintain my sense of humor about it all. Although I must admit my humor is quite irreverant and some people might not find it funny - but I do. I have to keep on laughing because it's either laugh or cry. Right now I know there is no middle of the road for me emotionally speaking so I am choosing to laugh. I mean, you should see me trying to scoot quickly to the restroom pushing my IV pole and holding my Cottonelle wipes and telling people, "Out of the way...don't make me have to use my puppy pad!!!" I'm clumsy and that only makes it all more comical to watch. I tend to forget to lower my IV pole and will often times clang it into the top of the doorway. This often causes me to say, "K - geesh - watch the pole you idiot" and yes, I talk to myself out loud so everyone gets to hear me admonish myself. They really laugh when I answer myself with something like "Well, K I can only focus on one problem at a time right now and getting to the bathroom is more important than being graceful with the IV pole."
So yes, I feel like crap - literally - haha. BUT this too shall pass and I know it will. I trust that God is working in me and around me and He always has ways of making me see things so that I don't just fall down in the floor and pitch a good old fashioned fit. He allows me to see all the things I have to be thankful for and how lucky I am to be here. I always pray that once I am well I NEVER lose sight of how very precious being healthy is. It is a gift and like so many other gifts from God we humans often take it for granted too often.
So, there's my update. I'm hanging in there just fine - I'm dealing with the tests, the meds, the side effects, the other patients, etc. as best as I can. I feel like an old pro at this now. I almost remember EVERY single nurses name (which is huge because there's like 15 of them that switch out shifts & we all know how bad I am with names these days!). Anyway, hopefully the stomach issues will calm down and I can get back to the business of healing, taking supplements and most importantly, allowing God to always work through me so that other people can feel His love coming out of me. I know that He has big plans for me up here that include more than just me getting my health back. I'm praying daily that He shows me what all He wants me to accomplish while I am here and what people He wants me to reach out to specifically.
I love you all and I hope that you keep on reading my rants and praying for me and everyone else in the clinic. Some of them really don't hold out much hope for healing and that breaks my heart because without hope and faith I can't imagine how I would handle going through this. I pray that God tells me when to keep my own thoughts quiet and allow the Holy Spirit to speak through my mouth with encouraging and loving words.
Okay, so it's official - I am not good at giving "quick updates" - sorry. I'll leave you with this:
"I will be your God throughout your lifetime - until your hair is white with age. I made you and I will care for you. I will carry you along and save you." Isaiah 46:4 (NLT)
Wednesday, July 29, 2009
Monday, July 27, 2009
One step forward then two steps back...
That's how I feel right now. Any progress I make seems to be negated by another new problem. The culprit this time is still my entire digestive tract and so I feel so weak, but at the same time I am mad because it's causing me to have to back track on my treatment protocol.
Again the following may be TMI so don't say I didn't warn you. It's been a week since I have actually been able to digest food or pills properly and have "regular bathroom visits". There, that wasn't worded too graphically. Anyway, it's gotten to be a big enough problem that the doctor decided today that I am not to take ANY oral medications. That isn't just the 20+ supplements though. It includes my 2 oral antibiotics, the mouth spray that helps keep my cortisol levels normal, the Relenza inhaler to fight off the flu, and the Ativan and Valium. I hate this so much, but I already knew she was going to have to take me off orals and so I didn't take my morning supplements today before treatment. I did take my Ativan and Valium though because they help so much with my anxiety issues. I'm not real sure how well I will do around everyone during afternoon treatment without the help of those prescriptions. I know that if I get too anxious they can give me a shot of Ativan or Valium or maybe put it in my IV so I've decided not to dwell on that part too much.
I'm just feeling low because I want to do all I can to get well and I hate feeling like I'm losing ground instead of gaining. My body has declared war against me and I don't like thinking that it's winning - at least for the moment. However, I also don't want to feel so weak and nauseated all of the time so I understand why this step must be taken. I cannot heal properly if I am too weak or if I lose my appetite and have difficulty with eating anything.
So, while I can still joke about the fact that I am just going to suit up in some adult diapers, I am a bit down today. I feel like I finally got the bleeding under control a couple of weeks ago and had no idea that my body intestines would decide to give me even more trouble than the bleeding!
But I know I am in good hands and I trust in God's plan for my life and for my treatment. I know that I will feel better mentally as soon as I am not feeling so sick and weak too. I just want to feel like I am doing all I can to fight these illnesses and I want to move in a forward direction instead of going backwards. I have to realize that this might not be a "backwards move" though and that God may be using this affliction to help the doctor find out more about what all is going wrong with my entire body. I pray for strength and patience as I wait on God's perfect timing and I know that sometimes we learn more by looking behind us than we do when we try to look ahead. For now I am just going to lean on God to get me through all of this moment by moment.
Please pray that whatever is causing all these problems will be easy for the doctor to figure out and that I will get back on track and headed in the right direction. No, scratch that because that's just what I want. Instead pray that God's will be done in regards to my entire situation. He may take what I see as a frustrating circumstance and use it to teach me important lessons. Lessons about being patient, or about having faith in Him for ALL things, or just about appreciating being in treatments. Maybe that's it. Maybe I'd been complaining about how difficult the IV treatments were and now I can say that honestly, compared to where I am now, they were actually kind of easy!
I hope you are all having good Mondays and I will try and keep you updated as I learn more.
Oh, M is flying back home today and my mom is on her way in now. Pray that they both have safe travels and that God will fill them with the necessary strength and peace needed through this process.
"The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23 (NRSV)
Again the following may be TMI so don't say I didn't warn you. It's been a week since I have actually been able to digest food or pills properly and have "regular bathroom visits". There, that wasn't worded too graphically. Anyway, it's gotten to be a big enough problem that the doctor decided today that I am not to take ANY oral medications. That isn't just the 20+ supplements though. It includes my 2 oral antibiotics, the mouth spray that helps keep my cortisol levels normal, the Relenza inhaler to fight off the flu, and the Ativan and Valium. I hate this so much, but I already knew she was going to have to take me off orals and so I didn't take my morning supplements today before treatment. I did take my Ativan and Valium though because they help so much with my anxiety issues. I'm not real sure how well I will do around everyone during afternoon treatment without the help of those prescriptions. I know that if I get too anxious they can give me a shot of Ativan or Valium or maybe put it in my IV so I've decided not to dwell on that part too much.
I'm just feeling low because I want to do all I can to get well and I hate feeling like I'm losing ground instead of gaining. My body has declared war against me and I don't like thinking that it's winning - at least for the moment. However, I also don't want to feel so weak and nauseated all of the time so I understand why this step must be taken. I cannot heal properly if I am too weak or if I lose my appetite and have difficulty with eating anything.
So, while I can still joke about the fact that I am just going to suit up in some adult diapers, I am a bit down today. I feel like I finally got the bleeding under control a couple of weeks ago and had no idea that my body intestines would decide to give me even more trouble than the bleeding!
But I know I am in good hands and I trust in God's plan for my life and for my treatment. I know that I will feel better mentally as soon as I am not feeling so sick and weak too. I just want to feel like I am doing all I can to fight these illnesses and I want to move in a forward direction instead of going backwards. I have to realize that this might not be a "backwards move" though and that God may be using this affliction to help the doctor find out more about what all is going wrong with my entire body. I pray for strength and patience as I wait on God's perfect timing and I know that sometimes we learn more by looking behind us than we do when we try to look ahead. For now I am just going to lean on God to get me through all of this moment by moment.
Please pray that whatever is causing all these problems will be easy for the doctor to figure out and that I will get back on track and headed in the right direction. No, scratch that because that's just what I want. Instead pray that God's will be done in regards to my entire situation. He may take what I see as a frustrating circumstance and use it to teach me important lessons. Lessons about being patient, or about having faith in Him for ALL things, or just about appreciating being in treatments. Maybe that's it. Maybe I'd been complaining about how difficult the IV treatments were and now I can say that honestly, compared to where I am now, they were actually kind of easy!
I hope you are all having good Mondays and I will try and keep you updated as I learn more.
Oh, M is flying back home today and my mom is on her way in now. Pray that they both have safe travels and that God will fill them with the necessary strength and peace needed through this process.
"The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23 (NRSV)
Friday, July 24, 2009
Roller coaster days
That's what this whole treatment regimen feels like - just a roller coaster ride. I guess that's life in general, there are good days and bad days. I have had some really bad days this week. They always seem to follow my really good days too. Makes it harder to take the bad days when you feel like you were feeling much better just the day before!
Anyway, my main problem right now is every single organ that has anything to do with my intestinal tract really. From the stomach to the colon I'm just a wreck. This is not news to me, I have always had issues like "nervous stomach" or "spastic colon", etc. However, the problem is that I am having a really hard time absorbing or digesting anything well. Of course I need to be digesting food well so I can feel stronger, but there's more at stake here than just that. I need to be able to get my intestinal tract back in order so I can absorb all of the medications and supplements the doctor has me taking to get me healthy again. Without my "gut" (as my doc calls it) working with me and just working correctly in general, it will take me a lot longer to get well.
This is all under the "TMI" category (as in "too much info") and I know that but it is what it is. Honestly, I have no modesty when it comes to discussing my health because I guess I am just used to these things? Who knows. But if you don't want to get "TMI" then you might want to skip the rest of this paragraph. Basically everything that I was putting in (food, pills, supplements, etc.) was literally RUNNING through my intestines. A lot of pills were even coming out looking just as they did when they went in. It got to the point where those pills looked like the only solid things that were passing through. Everything else was liquid and I was getting dehydrated and feeling VERY weak. I was unable to sleep because I would be woken up by my stomach and have to run to the bathroom. I actually laid on a puppy pad in the bed and sat on one in my treatment chair in case I was unable to make it to the bathroom in time! This went on for 4 days even with the prescription the doc had me on. I said earlier that it was prescription strength fiber, but actually it's more like a "binding agent" and helps to "firm things up". This morning the doctor doubled this dose since it wasn't helping out yet. After my second dose this afternoon I haven't had any more bathroom runs which is WONDERFUL. Now I just have to watch to make sure that my intestines don't do their normal "quick change" where they decide to go from one extreme to another & I find myself "all stopped up". The doc knows that I have had intestinal issues since birth basically and she had already assumed that getting my stomach, colon, intestines, etc. in working order would be our first big hurdle.
Pray that I am able to find and maintain that perfect balance so that all these other medications can do their jobs properly. These stomach issues are only going to delay my overall progress unless I can maintain that balance. The Cipro should be taking care of killing off that Kiebsiella pneumoniae and hopefully that is the main culprit behind all these tummy problems and they will fade away as we take care of that.
But that is why I haven't been updating much. I've felt like death warmed over and been too weak to keep everyone in the loop. Not to worry though, even tummy issues cannot kill my sense of humor. The other day in treatment one of the girls was saying that she was having a bad day & I said something like, "A bad day where things just aren't going your way or more like 'Hey, I'm considering the benefits of adult diapers' kind of bad day?" We all giggled over that until I said the laughter had to stop because laughing could send my tummy into overload and none of us wanted to be party to that!!! But, I really believe it helps to make light of all these rotten things that happen as you go through this treatment. You cannot focus on the bad or you would be depressed all the time. I'll have you all know that I had yet to actually send M to the store for the adult diapers, but my pride was wearing down and if my tummy hadn't started feeling just a bit better this afternoon, who knows - I may have decided to become the spokesmodel for Depends and tried to get them to market their wares to a younger demographic...haha.
This afternoon I read some more of the book I mentioned earlier, "100 Days In The Secret Place" and again God showed me how my "poor pitiful me" attitude about my silly stomach issues was not the way to go. I wanted to quote a couple of things from it that really touched me this afternoon:
"God wishes to make your soul pure. He purifies it by His Wisdom just as a refiner purifies metal in the furnace. Fire is the only thing which can purify gold. Again, the fire that consumes us - utterly - is His highest wisdom. This fire gradually consumes all that is earthly; it takes out all foreign matter and separates these things from the gold." - Jeanne Guyon
That made me see what I was going through in a different light. As though God was having to literally get all of my old self out of me - spiritually and physically - in order to purify me. That might not be it, but it did help me see a really bad situation in a much better light.
The next chapter talked about drawing inward and it addressed letting go of anxiety. It spoke a lot about cultivating silence. I have written before that it is during my quiet times that I feel God working in me. I felt it today as I sat in that treatment chair and again asked God to put my heart and soul in His fire so that He might purify me. The following was at the end of a wonderful chapter but I know you don't have all day to read my blog! Just know I highly recommend this book (it was compiled by Gene Edwards if you want to read it yourself). Anyway, I am sharing this last part which is a prayer written by Fenelon in the late 1600s. Funny how we all think that so many things in the world have changed since those days. I mean, there have been a lot of changes, but the most important thing, how we relate to God, really never changes. The following prayer is a perfect example of that:
Prayer of Surrender:
My God, I want to give myself to you. Give me the courage to do this. My spirit within me sighs after you. Strengthen my will. Take me. If I don't have the strength to give You everything, then draw me by the sweetness of Your love. Lord, who do I belong to, if not to you? What a horror to belong to myself and my passions! Help me to find all my happiness in You, for there is no happiness outside of You.
Why am I afraid to break out of my chains? Do the things of this world mean more to me than You? Am I afraid to give myself to You? What a mistake! It is not even I who would give myself to You, but You who would give Yourself to me. Take my heart.
What joy it is to be with You, to be quiet so that I might hear Your voice! Feed me and teach me out of Your depths. Oh God, You only make me love You. Why should I fear to give You everything and draw close to You? To be left to the world is more frightening than this! Your mercy can overcome any obstacle. I am unworthy of You , but I can become a miracle of Your grace.
- Archbishop Francois de Fenelon
I said that prayer myself as I read it. I know God is good and He has GREAT PLANS - I just don't know what they are or when they will come about. I can only trust in His perfect timing and His perfect love.
Thank you all for reading and praying for me. I appreciate every comment you write or message you send. I am learning so much here - I am learning about all that has been going wrong with me physically and I am also learning how God wants me to use this experience to change for the better spiritually too. I hope you are all well and have wonderful weekends with family and friends! I also pray that you allow God to take over your life so that you too can find that happiness that only He can provide.
Much love to you all!
K
Anyway, my main problem right now is every single organ that has anything to do with my intestinal tract really. From the stomach to the colon I'm just a wreck. This is not news to me, I have always had issues like "nervous stomach" or "spastic colon", etc. However, the problem is that I am having a really hard time absorbing or digesting anything well. Of course I need to be digesting food well so I can feel stronger, but there's more at stake here than just that. I need to be able to get my intestinal tract back in order so I can absorb all of the medications and supplements the doctor has me taking to get me healthy again. Without my "gut" (as my doc calls it) working with me and just working correctly in general, it will take me a lot longer to get well.
This is all under the "TMI" category (as in "too much info") and I know that but it is what it is. Honestly, I have no modesty when it comes to discussing my health because I guess I am just used to these things? Who knows. But if you don't want to get "TMI" then you might want to skip the rest of this paragraph. Basically everything that I was putting in (food, pills, supplements, etc.) was literally RUNNING through my intestines. A lot of pills were even coming out looking just as they did when they went in. It got to the point where those pills looked like the only solid things that were passing through. Everything else was liquid and I was getting dehydrated and feeling VERY weak. I was unable to sleep because I would be woken up by my stomach and have to run to the bathroom. I actually laid on a puppy pad in the bed and sat on one in my treatment chair in case I was unable to make it to the bathroom in time! This went on for 4 days even with the prescription the doc had me on. I said earlier that it was prescription strength fiber, but actually it's more like a "binding agent" and helps to "firm things up". This morning the doctor doubled this dose since it wasn't helping out yet. After my second dose this afternoon I haven't had any more bathroom runs which is WONDERFUL. Now I just have to watch to make sure that my intestines don't do their normal "quick change" where they decide to go from one extreme to another & I find myself "all stopped up". The doc knows that I have had intestinal issues since birth basically and she had already assumed that getting my stomach, colon, intestines, etc. in working order would be our first big hurdle.
Pray that I am able to find and maintain that perfect balance so that all these other medications can do their jobs properly. These stomach issues are only going to delay my overall progress unless I can maintain that balance. The Cipro should be taking care of killing off that Kiebsiella pneumoniae and hopefully that is the main culprit behind all these tummy problems and they will fade away as we take care of that.
But that is why I haven't been updating much. I've felt like death warmed over and been too weak to keep everyone in the loop. Not to worry though, even tummy issues cannot kill my sense of humor. The other day in treatment one of the girls was saying that she was having a bad day & I said something like, "A bad day where things just aren't going your way or more like 'Hey, I'm considering the benefits of adult diapers' kind of bad day?" We all giggled over that until I said the laughter had to stop because laughing could send my tummy into overload and none of us wanted to be party to that!!! But, I really believe it helps to make light of all these rotten things that happen as you go through this treatment. You cannot focus on the bad or you would be depressed all the time. I'll have you all know that I had yet to actually send M to the store for the adult diapers, but my pride was wearing down and if my tummy hadn't started feeling just a bit better this afternoon, who knows - I may have decided to become the spokesmodel for Depends and tried to get them to market their wares to a younger demographic...haha.
This afternoon I read some more of the book I mentioned earlier, "100 Days In The Secret Place" and again God showed me how my "poor pitiful me" attitude about my silly stomach issues was not the way to go. I wanted to quote a couple of things from it that really touched me this afternoon:
"God wishes to make your soul pure. He purifies it by His Wisdom just as a refiner purifies metal in the furnace. Fire is the only thing which can purify gold. Again, the fire that consumes us - utterly - is His highest wisdom. This fire gradually consumes all that is earthly; it takes out all foreign matter and separates these things from the gold." - Jeanne Guyon
That made me see what I was going through in a different light. As though God was having to literally get all of my old self out of me - spiritually and physically - in order to purify me. That might not be it, but it did help me see a really bad situation in a much better light.
The next chapter talked about drawing inward and it addressed letting go of anxiety. It spoke a lot about cultivating silence. I have written before that it is during my quiet times that I feel God working in me. I felt it today as I sat in that treatment chair and again asked God to put my heart and soul in His fire so that He might purify me. The following was at the end of a wonderful chapter but I know you don't have all day to read my blog! Just know I highly recommend this book (it was compiled by Gene Edwards if you want to read it yourself). Anyway, I am sharing this last part which is a prayer written by Fenelon in the late 1600s. Funny how we all think that so many things in the world have changed since those days. I mean, there have been a lot of changes, but the most important thing, how we relate to God, really never changes. The following prayer is a perfect example of that:
Prayer of Surrender:
My God, I want to give myself to you. Give me the courage to do this. My spirit within me sighs after you. Strengthen my will. Take me. If I don't have the strength to give You everything, then draw me by the sweetness of Your love. Lord, who do I belong to, if not to you? What a horror to belong to myself and my passions! Help me to find all my happiness in You, for there is no happiness outside of You.
Why am I afraid to break out of my chains? Do the things of this world mean more to me than You? Am I afraid to give myself to You? What a mistake! It is not even I who would give myself to You, but You who would give Yourself to me. Take my heart.
What joy it is to be with You, to be quiet so that I might hear Your voice! Feed me and teach me out of Your depths. Oh God, You only make me love You. Why should I fear to give You everything and draw close to You? To be left to the world is more frightening than this! Your mercy can overcome any obstacle. I am unworthy of You , but I can become a miracle of Your grace.
- Archbishop Francois de Fenelon
I said that prayer myself as I read it. I know God is good and He has GREAT PLANS - I just don't know what they are or when they will come about. I can only trust in His perfect timing and His perfect love.
Thank you all for reading and praying for me. I appreciate every comment you write or message you send. I am learning so much here - I am learning about all that has been going wrong with me physically and I am also learning how God wants me to use this experience to change for the better spiritually too. I hope you are all well and have wonderful weekends with family and friends! I also pray that you allow God to take over your life so that you too can find that happiness that only He can provide.
Much love to you all!
K
Tuesday, July 21, 2009
More test results...
So M & I met with the doctor last night and went over some of the test results that had come in since my last meeting. I got results of my bone density scan, my comprehensive digestive analysis, my most recent blood work from last Thursday, and then two tests that were done on the lymphocytes from my blood to check for vitamin and nutrient deficiencies.
The comphrensive digestive analysis showed a lot of what I already knew. Mainly that I am very low in 2 of the 3 "beneficial bacteria" and that I have additional bacteria that is not "beneficial". I have Kiebsiella pneumoniae in my intestines which the doctor said could be the reason I am having such a miserable time with the colonics and why I am in the bathroom almost as much as I am in the treatment chair or my bed. I will be taking the antibiotic Cipro orally for 3 months to get rid of this. I also showed that I had gamma haemolytic streptococcus which isn't a "potential pathogen" like the Kiebsiella is, but still is something that might cause some issues but all the antibiotics will help take care of it to.
Good news is that I was negative for H. pylori again in this analysis so hopefully that means I really DO NOT have that and that it isn't just hiding out in the biofilm. Also there were again no parasites which is also GREAT news.
I found out in the nutrient analysis that I am deficient in Vitamin B12, Pleic Acid, Fructose, Magnesium, Spectrox and Gluthathione. That doesn't mean that I'm not eating foods with these nutrients in them, it means that my body is not absorbing them at all. The Gluthathione really upset me because as I have stated before I can't take the IV Gluthathione dose because it has Sulfa in it and I'm allergic to Sulfa drugs. Also, being deficient in B12 is something that's been ongoing for a few years now. What's really neat about these tests is that they show that my body is not absorbing them. Normally when you are low in B12 or some other vitamin the doctor just gives you a supplement to take. That's what happened to me 3+ years ago when my B12 was low. However, this test shows that my intestines can't break it down and absorb it so there's something else causing the deficiency. Basically, this explains a lot about why I was eating so much ice cream, sugars, meats, etc. and yet still not gaining any weight and actually losing it instead.
To help with that the doctor has put me on a couple of different things. One is called Ox Bile Acid (gross I know) but she said this would help me break down some of those vitamins because apparently my gallbladder is "stopped up" and not producing enough bile to break these essential vitamins and nutrients down. Along with the Creon 20 prescription she put me on to help with the enzyme production, I should start being able to get the necessary nutrients in my body. I'm also missing a necessary fat and she will be putting me on something to help with that as soon as my stomach calms down a little more and I can keep food in my intestines long enough to draw the necessary nutrients out. We're hoping to start that in a week or so. I will also be taking a presciption strength fiber to make my intestines and colon "firm up" which will also help keep the food in my body long enough to extract all the things I am deficient in!
OH - best news yet in my estimation is that since I have that K. pneumoniae in my intestines I will no longer be getting colonics - THANK YOU LORD! She said that was more than likely the reason that the colonics were making me so sick is because it was just stirring up a "bug" in my belly and causing more harm than good. I was very happy to know I won't be doing those for at least a month.
My blood work was taken the Thursday after my ER visit Wednesday night for my kidney stone where I passed so much blood. So my CBC was really able to show the results of how much blood I passed because my red & white blood cells were both low, my hemoglobin was low and my hematocrit was low. Even my overall platelet count was low. But the aPTT test that the ER ran had said it was taking over 200 seconds for my blood to clot. THEY WERE WRONG! They didn't test properly. It's only taking about 36 seconds for my blood to clot which is a little higher than normal but not at all in the "danger zone" that the ER doctor seemed to think I was in. Again, I thank God for a doctor who knows what she is doing and is very on top of her protocol.
Finally, the results of my bone density scan showed that my spine is good so YAY! However, my hips are showing signs of osteopenia which is what comes before osteoporosis. She is going to up my Vitamin D and is adding Vitamin K and also putting me on more calcium supplements. She didn't feel the test was bad enough to warrant a prescription for calcium or any osteoporosis medications. She will be getting me into physical therapy as well to help me gain more strength in all my bones as well as my muscles because spending 3 years or so basically in bed all the time has definitely taken away all my physical strength!
For those of you who are thinking, "But Karen, you have calcium oxylate kidney stones! Won't adding more calcium just mean more stones?" Well, this is how awesome this doctor is. She has me on this supplemental medication called Calci Clear AM and Calci Clear PM. The AM pills help my body process the calcium and get it back to the bones while the PM pills help to get rid of any oxidation of calcium that might try and build up during all these supplements. She did say I may end up passing a few more stones - mainly ones that are already in my kidneys - but her goal is to get my body to process calcium correctly so that I quit forming the stones all together!
I cannot describe to you how amazing it is to have a doctor look at THE WHOLE PICTURE and be able to tell me exactly what my body is doing, WHY my body does the things it does, and more importantly - what we can do to FIX IT! I thank God for giving my doctor the brilliant mind she has concerning the human body! I feel like I am finally in the right place and just seem to keep finding out more and more about how to regain my health while I'm here!
She said I have made amazing strides so far and I feel that way too. She of course knew that this past week has been really hard on my body and my mental state with the kidney stone and scare of the uterine bleeding, but I'm handling things as well as I can. She made sure to tell me & M that she's excited about my progress but wants us to know that I will still have some bad days as we continually fight all of these bacterial and viral infections. For instance, this week I have been just exhausted, but I think it's really all the action of last week is just catching up with me.
OH - one last change. We switched from Levaquin IV antibiotics to Doxycycline (or "Doxy" for short). I was experiencing some bad side effects from the Levaquin - it was causing a lot of my joint pain and giving me pain in my tendons. That's a somewhat common side effect so I've been on Doxy for 3 days now and my joints seem to be getting some better. Or shall I say they aren't hurting worse than they did while I was at home - haha.
So for anyone keeping count I am now on 4 antibiotics - IV Doxy, oral Azithromycin, oral Cipro, and my weekly Bicillin injections! I'm still taking the Relenza to get rid of the flu and she thinks after this last dose I should be flu free - YAY! I'll have the blood work run again 3 days after I finish this dose of Relenza to check and make sure.
I know this is a lot of information - believe me - it's a lot for me to take in so I can't imagine trying to read about it for someone else...haha! However, she has been able to get me feeling some better within a month. In fact, my potassium levels are already back to normal so I will stop taking the prescription potassium pills in a week. We hope to see the levels stay in the normal range. Overall she feels that my body is trying to get into a groove of working WITH me instead of against me! I mean, it feels like I have been beaten up and not put back together correctly, but that's just part of the process you go through when you're taking all these drugs. I am on like 25 supplements now and I think 7 different prescriptions (not counting what goes into the IV) so it will just take some time. But I am seeing lab results that are looking better and I am getting to feel and see some progress physically as well.
Keep on praying because I know God is working in me right now and some days I don't want to be strong and go to treatment. Some days I don't even want to get out of the bed. But I know that I have to keep on fighting this and I know that God is carrying me through when I seem to be falling down. I will be excited to see my next blood work up because I know it will have much better results since all my bleeding issues have been taken care of. God is so good, He is in control, and He is letting me lean on Him for strength for every step I take in this battle.
I'm tired and still trying to process some of this information so I'm going to sign off now. Thanks for reading and praying and keeping me in your thoughts. It means so very much to me. I love you all and I know that without this blog - without this way of letting people know what all was going on, I might not have the mental fortitude needed to keep up this fight. So I appreciate all of you more than you will ever know! You help me push on through the hard times, you celebrate the good times with me & you also help me see when I am trying to do the pushing instead of just leaning on God for my healing and my help. Thank you all.
Good verse from the calendar today:
"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16 (NIV)
I approach His throne with confidence, but also in awe and wonder of all the wonderful things He has already done for me and I stand in amazement when I think of what all plans He has for my future. I'll say it again - GOD IS SO GOOD!!!
The comphrensive digestive analysis showed a lot of what I already knew. Mainly that I am very low in 2 of the 3 "beneficial bacteria" and that I have additional bacteria that is not "beneficial". I have Kiebsiella pneumoniae in my intestines which the doctor said could be the reason I am having such a miserable time with the colonics and why I am in the bathroom almost as much as I am in the treatment chair or my bed. I will be taking the antibiotic Cipro orally for 3 months to get rid of this. I also showed that I had gamma haemolytic streptococcus which isn't a "potential pathogen" like the Kiebsiella is, but still is something that might cause some issues but all the antibiotics will help take care of it to.
Good news is that I was negative for H. pylori again in this analysis so hopefully that means I really DO NOT have that and that it isn't just hiding out in the biofilm. Also there were again no parasites which is also GREAT news.
I found out in the nutrient analysis that I am deficient in Vitamin B12, Pleic Acid, Fructose, Magnesium, Spectrox and Gluthathione. That doesn't mean that I'm not eating foods with these nutrients in them, it means that my body is not absorbing them at all. The Gluthathione really upset me because as I have stated before I can't take the IV Gluthathione dose because it has Sulfa in it and I'm allergic to Sulfa drugs. Also, being deficient in B12 is something that's been ongoing for a few years now. What's really neat about these tests is that they show that my body is not absorbing them. Normally when you are low in B12 or some other vitamin the doctor just gives you a supplement to take. That's what happened to me 3+ years ago when my B12 was low. However, this test shows that my intestines can't break it down and absorb it so there's something else causing the deficiency. Basically, this explains a lot about why I was eating so much ice cream, sugars, meats, etc. and yet still not gaining any weight and actually losing it instead.
To help with that the doctor has put me on a couple of different things. One is called Ox Bile Acid (gross I know) but she said this would help me break down some of those vitamins because apparently my gallbladder is "stopped up" and not producing enough bile to break these essential vitamins and nutrients down. Along with the Creon 20 prescription she put me on to help with the enzyme production, I should start being able to get the necessary nutrients in my body. I'm also missing a necessary fat and she will be putting me on something to help with that as soon as my stomach calms down a little more and I can keep food in my intestines long enough to draw the necessary nutrients out. We're hoping to start that in a week or so. I will also be taking a presciption strength fiber to make my intestines and colon "firm up" which will also help keep the food in my body long enough to extract all the things I am deficient in!
OH - best news yet in my estimation is that since I have that K. pneumoniae in my intestines I will no longer be getting colonics - THANK YOU LORD! She said that was more than likely the reason that the colonics were making me so sick is because it was just stirring up a "bug" in my belly and causing more harm than good. I was very happy to know I won't be doing those for at least a month.
My blood work was taken the Thursday after my ER visit Wednesday night for my kidney stone where I passed so much blood. So my CBC was really able to show the results of how much blood I passed because my red & white blood cells were both low, my hemoglobin was low and my hematocrit was low. Even my overall platelet count was low. But the aPTT test that the ER ran had said it was taking over 200 seconds for my blood to clot. THEY WERE WRONG! They didn't test properly. It's only taking about 36 seconds for my blood to clot which is a little higher than normal but not at all in the "danger zone" that the ER doctor seemed to think I was in. Again, I thank God for a doctor who knows what she is doing and is very on top of her protocol.
Finally, the results of my bone density scan showed that my spine is good so YAY! However, my hips are showing signs of osteopenia which is what comes before osteoporosis. She is going to up my Vitamin D and is adding Vitamin K and also putting me on more calcium supplements. She didn't feel the test was bad enough to warrant a prescription for calcium or any osteoporosis medications. She will be getting me into physical therapy as well to help me gain more strength in all my bones as well as my muscles because spending 3 years or so basically in bed all the time has definitely taken away all my physical strength!
For those of you who are thinking, "But Karen, you have calcium oxylate kidney stones! Won't adding more calcium just mean more stones?" Well, this is how awesome this doctor is. She has me on this supplemental medication called Calci Clear AM and Calci Clear PM. The AM pills help my body process the calcium and get it back to the bones while the PM pills help to get rid of any oxidation of calcium that might try and build up during all these supplements. She did say I may end up passing a few more stones - mainly ones that are already in my kidneys - but her goal is to get my body to process calcium correctly so that I quit forming the stones all together!
I cannot describe to you how amazing it is to have a doctor look at THE WHOLE PICTURE and be able to tell me exactly what my body is doing, WHY my body does the things it does, and more importantly - what we can do to FIX IT! I thank God for giving my doctor the brilliant mind she has concerning the human body! I feel like I am finally in the right place and just seem to keep finding out more and more about how to regain my health while I'm here!
She said I have made amazing strides so far and I feel that way too. She of course knew that this past week has been really hard on my body and my mental state with the kidney stone and scare of the uterine bleeding, but I'm handling things as well as I can. She made sure to tell me & M that she's excited about my progress but wants us to know that I will still have some bad days as we continually fight all of these bacterial and viral infections. For instance, this week I have been just exhausted, but I think it's really all the action of last week is just catching up with me.
OH - one last change. We switched from Levaquin IV antibiotics to Doxycycline (or "Doxy" for short). I was experiencing some bad side effects from the Levaquin - it was causing a lot of my joint pain and giving me pain in my tendons. That's a somewhat common side effect so I've been on Doxy for 3 days now and my joints seem to be getting some better. Or shall I say they aren't hurting worse than they did while I was at home - haha.
So for anyone keeping count I am now on 4 antibiotics - IV Doxy, oral Azithromycin, oral Cipro, and my weekly Bicillin injections! I'm still taking the Relenza to get rid of the flu and she thinks after this last dose I should be flu free - YAY! I'll have the blood work run again 3 days after I finish this dose of Relenza to check and make sure.
I know this is a lot of information - believe me - it's a lot for me to take in so I can't imagine trying to read about it for someone else...haha! However, she has been able to get me feeling some better within a month. In fact, my potassium levels are already back to normal so I will stop taking the prescription potassium pills in a week. We hope to see the levels stay in the normal range. Overall she feels that my body is trying to get into a groove of working WITH me instead of against me! I mean, it feels like I have been beaten up and not put back together correctly, but that's just part of the process you go through when you're taking all these drugs. I am on like 25 supplements now and I think 7 different prescriptions (not counting what goes into the IV) so it will just take some time. But I am seeing lab results that are looking better and I am getting to feel and see some progress physically as well.
Keep on praying because I know God is working in me right now and some days I don't want to be strong and go to treatment. Some days I don't even want to get out of the bed. But I know that I have to keep on fighting this and I know that God is carrying me through when I seem to be falling down. I will be excited to see my next blood work up because I know it will have much better results since all my bleeding issues have been taken care of. God is so good, He is in control, and He is letting me lean on Him for strength for every step I take in this battle.
I'm tired and still trying to process some of this information so I'm going to sign off now. Thanks for reading and praying and keeping me in your thoughts. It means so very much to me. I love you all and I know that without this blog - without this way of letting people know what all was going on, I might not have the mental fortitude needed to keep up this fight. So I appreciate all of you more than you will ever know! You help me push on through the hard times, you celebrate the good times with me & you also help me see when I am trying to do the pushing instead of just leaning on God for my healing and my help. Thank you all.
Good verse from the calendar today:
"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16 (NIV)
I approach His throne with confidence, but also in awe and wonder of all the wonderful things He has already done for me and I stand in amazement when I think of what all plans He has for my future. I'll say it again - GOD IS SO GOOD!!!
Friday, July 17, 2009
God takes care of His children
I know that God takes care of His children because I have gotten to see how He has taken such good care of me over the past two days (and the past 34 years of course!).
On the health news front basically me & my doctor here were right & the ER doc was so very wrong. I imagined that would be the case. I just returned from the OB-GYN appt that my IV doctor set me up with today. There is no real uterine bleeding. He said he thinks I had a stone as well and it was probably already in the bladder by the time the ER did the CT scan. That would explain why my urine was completely clear 2 hours after I left the ER. The ER doc was so focused on the "lab reports" that he did what so many other doctors do - he paid no attention to the actual physical symptoms. Again, God is reminding me why I am seeing this brilliant doc in Kansas City instead of being bounced from specialist to specialist back in Alabama. I love that even though my IV doc knew that the Heparin was not the cause of the blood that she took me off of it for 2 days just to "make me feel better". She wants me to know that she listens and she knew that my ordeal at the ER was a scary one and she would never force me to take a drug that some doctor told me to stop immediately, even when she knows that doctor is ignorant about her type of medicine she practices.
The OB-GYN also told me that a build up of Heparin would have been causing nose bleeds or my gums would be bleeding when I brushed my teeth - it wouldn't just cause blood in my urine. He thinks it will be fine for me to get back on the Heparin. I also researched more about that aPTT test that was done in the ER and found that if they draw the blood for that test from your PICC line it will have more Heparin in the sample since that's where the Heparin is injected. I wish I had known that when I was at the ER in order to explain that to the doctor because he clearly didn't know about that.
My abdominal pain is still here, but not as bad and the OB-GYN thinks it might just be that I am carrying some extra fluid because he didn't think the CT scan showed any sign that a cyst had ruptured. I didn't think one had ruptured either. I thought I had a stone & just wanted to make sure it wasn't stuck and causing too much bleeding. Funny thing is that the ER doctor still wrote me prescriptions for pain meds and anti nausea meds AFTER telling me he didn't think I had a stone. So you tell me, if the doctor didn't think it was a kidney stone but rather bleeding due to a high dose of Heparin, why on earth would he prescribe me narcotics??? Ladies & gentlemen, that's what I'm beginning to refer to as "band-aid medicine". They'll whip out a prescription pad in no time just to get you out the door. Sad but true.
Now, my sweet husband arrived safely last night & he is trying hard to get into the routine that mom & I had going so well for the past 4 weeks. It's a learning curve as to when I take what supplements, when I eat & what I eat, when my pain is at it's worst (usually right when I wake up & then immediately after treatment), and when I am having to go to bed which is around 9:00 p.m. these days. I'm just thankful I'm sleeping again, even if it's still interrupted by pain.
Thank you all for your prayers and your wonderfully encouraging comments about my last entry. It meant the world to me that God was able to work through me to reach others who have their own pains whether they are physical, emotional or spiritual. It was amazing to me that I actually did not want to write that post yesterday morning but I did because I knew God was wanting me to really grasp what was going on around me. He was wanting me to see that He has taken care of me so far, so why start questioning Him now! I was humbled by the fact that when I started writing yesterday I was already in tears but by the time I was done I felt such a wonderful peace and promptly took a good nap. My friend Christy uses a Bible verse that says something like, "And when you lie down, your sleep will be sweet." God gave me that sweet sleep as soon as He made sure I saw what He was trying to teach me.
I am so in awe of God and how He works in my life and in the lives of those around me. He continues to show His hand in so many things that happen in the lives of people I know and in my own life. He is concerned with even the smallest details of our lives - how amazing is that? I am praising Him today for carrying me through yet another "trying time" in my life and I am asking forgiveness for how often I question if He will carry me through yet again. He has yet to fail me & I must focus on all the things He has done for me - both big and small. God takes care of His children. We just have to allow Him to do so - we must trust in Him and follow in faith in order to feel His strength when we ourselves are oh so weary.
I'll be headed to afternoon treatments in about 40 minutes and I'll be able to tell the nurses to let my doctor know that the OB-GYN has cleared me for the Heparin again! THANK YOU LORD! It was helping so much by getting more blood to my brain and of course it was helping my cardiac issues for my heart to not have to work so hard to get that thick blood pumped through my body. I am happy to report that I will be able to start back on it. I should have trusted my instincts to begin with! I know my body better than any other human on the planet. I know I had a stone. I should have trusted my gut and not allowed myself to get scared by some ER doctor who doesn't know a thing about me or my whole situation. God is teaching me to trust my judgement again. It's been awhile since I have because I have had such trouble thinking clearly, but He is letting me know that He's working on my body, my heart and my head and that I should trust myself more and not allow the worry to get to me. God did not give us a spirit of fear!
I'll sign off with these two verses that seem quite fitting for today:
"Prove me, O Lord, and try me; test my heart and mind. For your steadfast love is before my eyes, and I walk in faithfulness to you." Psalm 26:2-3 (NRSV)
"Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go." Joshua 1:9 (NRSV)
On the health news front basically me & my doctor here were right & the ER doc was so very wrong. I imagined that would be the case. I just returned from the OB-GYN appt that my IV doctor set me up with today. There is no real uterine bleeding. He said he thinks I had a stone as well and it was probably already in the bladder by the time the ER did the CT scan. That would explain why my urine was completely clear 2 hours after I left the ER. The ER doc was so focused on the "lab reports" that he did what so many other doctors do - he paid no attention to the actual physical symptoms. Again, God is reminding me why I am seeing this brilliant doc in Kansas City instead of being bounced from specialist to specialist back in Alabama. I love that even though my IV doc knew that the Heparin was not the cause of the blood that she took me off of it for 2 days just to "make me feel better". She wants me to know that she listens and she knew that my ordeal at the ER was a scary one and she would never force me to take a drug that some doctor told me to stop immediately, even when she knows that doctor is ignorant about her type of medicine she practices.
The OB-GYN also told me that a build up of Heparin would have been causing nose bleeds or my gums would be bleeding when I brushed my teeth - it wouldn't just cause blood in my urine. He thinks it will be fine for me to get back on the Heparin. I also researched more about that aPTT test that was done in the ER and found that if they draw the blood for that test from your PICC line it will have more Heparin in the sample since that's where the Heparin is injected. I wish I had known that when I was at the ER in order to explain that to the doctor because he clearly didn't know about that.
My abdominal pain is still here, but not as bad and the OB-GYN thinks it might just be that I am carrying some extra fluid because he didn't think the CT scan showed any sign that a cyst had ruptured. I didn't think one had ruptured either. I thought I had a stone & just wanted to make sure it wasn't stuck and causing too much bleeding. Funny thing is that the ER doctor still wrote me prescriptions for pain meds and anti nausea meds AFTER telling me he didn't think I had a stone. So you tell me, if the doctor didn't think it was a kidney stone but rather bleeding due to a high dose of Heparin, why on earth would he prescribe me narcotics??? Ladies & gentlemen, that's what I'm beginning to refer to as "band-aid medicine". They'll whip out a prescription pad in no time just to get you out the door. Sad but true.
Now, my sweet husband arrived safely last night & he is trying hard to get into the routine that mom & I had going so well for the past 4 weeks. It's a learning curve as to when I take what supplements, when I eat & what I eat, when my pain is at it's worst (usually right when I wake up & then immediately after treatment), and when I am having to go to bed which is around 9:00 p.m. these days. I'm just thankful I'm sleeping again, even if it's still interrupted by pain.
Thank you all for your prayers and your wonderfully encouraging comments about my last entry. It meant the world to me that God was able to work through me to reach others who have their own pains whether they are physical, emotional or spiritual. It was amazing to me that I actually did not want to write that post yesterday morning but I did because I knew God was wanting me to really grasp what was going on around me. He was wanting me to see that He has taken care of me so far, so why start questioning Him now! I was humbled by the fact that when I started writing yesterday I was already in tears but by the time I was done I felt such a wonderful peace and promptly took a good nap. My friend Christy uses a Bible verse that says something like, "And when you lie down, your sleep will be sweet." God gave me that sweet sleep as soon as He made sure I saw what He was trying to teach me.
I am so in awe of God and how He works in my life and in the lives of those around me. He continues to show His hand in so many things that happen in the lives of people I know and in my own life. He is concerned with even the smallest details of our lives - how amazing is that? I am praising Him today for carrying me through yet another "trying time" in my life and I am asking forgiveness for how often I question if He will carry me through yet again. He has yet to fail me & I must focus on all the things He has done for me - both big and small. God takes care of His children. We just have to allow Him to do so - we must trust in Him and follow in faith in order to feel His strength when we ourselves are oh so weary.
I'll be headed to afternoon treatments in about 40 minutes and I'll be able to tell the nurses to let my doctor know that the OB-GYN has cleared me for the Heparin again! THANK YOU LORD! It was helping so much by getting more blood to my brain and of course it was helping my cardiac issues for my heart to not have to work so hard to get that thick blood pumped through my body. I am happy to report that I will be able to start back on it. I should have trusted my instincts to begin with! I know my body better than any other human on the planet. I know I had a stone. I should have trusted my gut and not allowed myself to get scared by some ER doctor who doesn't know a thing about me or my whole situation. God is teaching me to trust my judgement again. It's been awhile since I have because I have had such trouble thinking clearly, but He is letting me know that He's working on my body, my heart and my head and that I should trust myself more and not allow the worry to get to me. God did not give us a spirit of fear!
I'll sign off with these two verses that seem quite fitting for today:
"Prove me, O Lord, and try me; test my heart and mind. For your steadfast love is before my eyes, and I walk in faithfulness to you." Psalm 26:2-3 (NRSV)
"Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go." Joshua 1:9 (NRSV)
Thursday, July 16, 2009
Conjunction junction...what's your function?
Remember that song from "School House Rocks"? Well, I am using it and changing the title to "Malfunction junction...what's your function?" because I am having some major malfunctions right now.
I did end up in the emergency room last night after 2 days of passing almost straight blood instead of urine. I thought I was dealing with a kidney stone (which would be so typical of me) and that I was just having a lot more blood due to being on Heparin which is a blood thinner or "anticoagulant". After having morphine and some nausea medication pushed into my PICC line they sent me for a CT scan to see where this problematic stone was located. Guess what? They didn't see a problematic stone. I have a small 2 mm sized stone just hanging out in my left kidney but no obstructions or calcifactions/stones anywhere in my right kidney or ureter. That didn't make much sense because my pain was definitely on the right side. The ER doc said I was on too high of a dose of Heparin and that I would need to talk to my doctor about it immediately. He basically scared me & mom to death saying that if I bumped into something or fell down I could walk around with internal bleeding and not know it. He gave me a copy of the blood work up and the CT scan report to give to my doctor this morning.
I didn't sleep much last night. Most people fall asleep after being given IV morphine and especially IV Phenergan - not me. They seem to keep me awake. Mom was astounded (and I think the ER doc was a little concerned) that in one day I had 4 mgs of Ativan and 15 mgs of Valium in pill form then 200 mgs of Benadryl, 25 mgs of Phenergan and two good doses of morphine all shot into my PICC line and I was walking around, talking, and even giving mom directions on how to get back to the apartment after our 5 hours of ER fun. I must admit, it concerns me too because the pain was never gone, the meds just made it more of a dull pain than a sharp pain.
The test they do to keep an eye on Heparin doses is called an aPTT test and I don't completely understand it. I'm not a doctor but I believe that it shows how long it takes for your blood to coagulate or clot. My doctor at the IV clinic takes my blood once a week and runs that test (along with several other weekly blood work ups) but that test is specifically to keep an eye on how the Heparin is effecting my blood. The ER doc last night ran that test and said most healthy people should have clotting times under 30 seconds. My test last night showed that my blood took over 200 seconds to clot properly and he thought the blood in my urine was caused by a build up of Heparin in my system.
Another reason for my sleepless night was honestly that I was scared. The doctor said I had some blood coming from my uterus as well and that I should return to the ER pronto if it got any darker or I started to see any clots? That part didn't make sense seeing as how he was concerned about my blood NOT clotting, but I've given up thinking I understand how these things work anymore. I went to bed worried that I wouldn't be able to get my morning IV treatments if I was not allowed to have Heparin. I showed up there this morning with copies of the ER blood work & CT scan results and gave them to the nurses to share with my doctor. She immediately said they could do my IV but told the nurses to discontinue the Heparin for now.
Later she came into the treatment room and said that she will be running another aPTT test on me this afternoon. I told her it was odd to me that by this morning there was no blood in my urine but I was still having uterine bleeding. She said that the CT scan showed that I may have had a ruptured ovarian cyst because there was a lot of fluid in my abdomen. She also said she thinks that I probably passed a kidney stone and was unable to see it due to the dark red urine. This made more sense to me than the ER doc's explanation because I don't see how a build up of Heparin that could cause that much blood to pass in my urine would suddenly just stop - which it did around 4 a.m. this morning. Her concern is more about the uterine bleeding now and she has made an "emergency work in appointment" for me to see an OB-GYN tomorrow at noon to figure out what is causing the problem.
I am trying very hard to wrap my brain around all of this. I know God is in control and I understand that I am working with the smartest doctor I've ever met. She told me that she's had patients with aPTT test levels in the 300s who NEVER had blood in their urine so she doesn't think it is the Heparin, but even so she is not one of those arrogant doctors who said, "There's no way that the Heparin is causing this so keep on getting it in your IV." Instead, she said we would stop the Heparin until we could figure out where & why I was bleeding. She knew I was worried and she calmed me down and said we were going to fix it and that it was just one more piece of the puzzle that is my health these days.
I want to be upset about all of this. I want to cry about it. I know a lot of those emotions are coming from the cocktail of heavy drugs I've received in the past 24 hours. I keep reminding myself that God has a plan for my life and that I need to just take each day in stride and not get frustrated over my many "malfunction junctions" but I do wish I knew what their "function" was in all of this. I want so badly to understand why I seem to have to deal with one more problem after another. My body seems to be at war against itself. I feel like as soon as I start to feel like I am making some progress BOOM something else completely unexpected comes up. I want to cry because I feel like just dealing with the months of IV treatments is all I can handle for now. But I'm not crying because I am learning how strong my God is and I feel His strength carrying me through these unexpected additional problems. I know it isn't my own personal strength that is pulling me through because I can feel my desire to fall apart and be a basketcase over all of this. So, this strength is definitely from God. Otherwise I would have packed up my toys, called it a day, and headed to the house already!!!
I am learning yet another important lesson. I looked around the treatment room this morning & my brain kept questioning, "Why are all these other people doing just fine with Heparin? Why can they handle the IV antioxidents? Why are they able to take that Glut push 3 times a week to help oxygen get to their brains? WHY GOD ARE THEY NOT HAVING THE SAME PROBLEMS THAT I AM HAVING?" Well, honestly I don't and probably will never know the answer to those questions. What I'm learning is that it is absolutely futile to ask them. God has a different life plan for every single one of us. I have to stop comparing my life to the lives of others and that really is hard. Yet today God showed me that comparing is really just judgement in disguise isn't it? I'm judging these people because they aren't having the same problems I am. WOW! How self absorbed does that make me? People tell me it's okay to vent and to cry and to complain every now & then and they are right in some respects. We all have a little grieving to do when we are in pain - whether that pain is physical, mental, emotional doesn't matter. But we cannot get bogged down in our grief or we will miss the lessons God is trying to show us. I am ever so slowly learning that I have been judging and feeling sorry for myself for years now. It is only when we stop looking internally and start looking outwardly that we will see how God uses both good and bad times to shape us into who He wants us to become. I wrote in an earlier post about a different outlook on suffering. I wrote about how we all have our own cross to pick up and follow Jesus. Paul spoke about that ever present thorn in his side and decided he would gladly suffer for Christ. Basically, if God felt that Paul was supposed to live the rest of his days with that pain, he would not simply live with that pain, but he would praise God for His wisdom in giving him that pain so that he could learn through it.
Nobody wants a thorn in their side or a cross to bear. But if you look around you I bet you'll start seeing some of these "invisible pains" in the people around you. I know that I am frustrated but when I look around that clinic it no longer matters that I had to be in the ER or that I have some unexplained bleeding. I see others whose physical ailments remind me that I am actually lucky. I'm walking where some of them are not. I'm talking easier while some of them cannot. I'm no longer having those horrible muscle spasms while some of them have full blown uncontrollable seizures almost daily. I will not allow myself to get bogged down focusing on what I don't have because being surrounded by these physical warriors who are fighting daily to just get to where I already am is humbling. So, yes, I have some malfunctions and I don't understand why nor do I understand their purpose. However, I get the feeling that God doesn't feel the need to explain all of that to me in this moment. He is expecting me to cling to Him and allow Him to work through me. I pray that I keep my focus on being positive. I pray that God uses me as He sees fit and places me in the lives of those who might need me or those who I might need to learn from.
I do ask that you pray for me as we try and figure out the source of my bleeding because I do want to regain my health and I want to praise God and give Him the glory for all of it! But I also ask that you pray for every single person I have seen in that clinic. It doesn't matter if you don't know their names - God knows who they are. I ask that you pray for me to have the strength to recognize when I am focusing too much on me and that God will fill me with His spirit so that I can bear my cross with gratitude. I ask that you pray that I look around not in judgement, but in love and that I will be able to see how I might be of help to those around me.
Thank you Lord for allowing me to write this and for reaching me as I type these words. Thank you for allowing me to put my problems in a better perspective so that I can continue to spread your love & your joy to everyone I meet. I know I will fall short, I know I will never be perfect in this life on this earth, but I pray that You use me however You see fit and that these malfunctions only serve to teach me to bend easily to Your will instead of worrying that I won't get to live the life I had planned for myself. The one I had planned might have been an easier road, but I know I would not have learned nearly as much.
I did end up in the emergency room last night after 2 days of passing almost straight blood instead of urine. I thought I was dealing with a kidney stone (which would be so typical of me) and that I was just having a lot more blood due to being on Heparin which is a blood thinner or "anticoagulant". After having morphine and some nausea medication pushed into my PICC line they sent me for a CT scan to see where this problematic stone was located. Guess what? They didn't see a problematic stone. I have a small 2 mm sized stone just hanging out in my left kidney but no obstructions or calcifactions/stones anywhere in my right kidney or ureter. That didn't make much sense because my pain was definitely on the right side. The ER doc said I was on too high of a dose of Heparin and that I would need to talk to my doctor about it immediately. He basically scared me & mom to death saying that if I bumped into something or fell down I could walk around with internal bleeding and not know it. He gave me a copy of the blood work up and the CT scan report to give to my doctor this morning.
I didn't sleep much last night. Most people fall asleep after being given IV morphine and especially IV Phenergan - not me. They seem to keep me awake. Mom was astounded (and I think the ER doc was a little concerned) that in one day I had 4 mgs of Ativan and 15 mgs of Valium in pill form then 200 mgs of Benadryl, 25 mgs of Phenergan and two good doses of morphine all shot into my PICC line and I was walking around, talking, and even giving mom directions on how to get back to the apartment after our 5 hours of ER fun. I must admit, it concerns me too because the pain was never gone, the meds just made it more of a dull pain than a sharp pain.
The test they do to keep an eye on Heparin doses is called an aPTT test and I don't completely understand it. I'm not a doctor but I believe that it shows how long it takes for your blood to coagulate or clot. My doctor at the IV clinic takes my blood once a week and runs that test (along with several other weekly blood work ups) but that test is specifically to keep an eye on how the Heparin is effecting my blood. The ER doc last night ran that test and said most healthy people should have clotting times under 30 seconds. My test last night showed that my blood took over 200 seconds to clot properly and he thought the blood in my urine was caused by a build up of Heparin in my system.
Another reason for my sleepless night was honestly that I was scared. The doctor said I had some blood coming from my uterus as well and that I should return to the ER pronto if it got any darker or I started to see any clots? That part didn't make sense seeing as how he was concerned about my blood NOT clotting, but I've given up thinking I understand how these things work anymore. I went to bed worried that I wouldn't be able to get my morning IV treatments if I was not allowed to have Heparin. I showed up there this morning with copies of the ER blood work & CT scan results and gave them to the nurses to share with my doctor. She immediately said they could do my IV but told the nurses to discontinue the Heparin for now.
Later she came into the treatment room and said that she will be running another aPTT test on me this afternoon. I told her it was odd to me that by this morning there was no blood in my urine but I was still having uterine bleeding. She said that the CT scan showed that I may have had a ruptured ovarian cyst because there was a lot of fluid in my abdomen. She also said she thinks that I probably passed a kidney stone and was unable to see it due to the dark red urine. This made more sense to me than the ER doc's explanation because I don't see how a build up of Heparin that could cause that much blood to pass in my urine would suddenly just stop - which it did around 4 a.m. this morning. Her concern is more about the uterine bleeding now and she has made an "emergency work in appointment" for me to see an OB-GYN tomorrow at noon to figure out what is causing the problem.
I am trying very hard to wrap my brain around all of this. I know God is in control and I understand that I am working with the smartest doctor I've ever met. She told me that she's had patients with aPTT test levels in the 300s who NEVER had blood in their urine so she doesn't think it is the Heparin, but even so she is not one of those arrogant doctors who said, "There's no way that the Heparin is causing this so keep on getting it in your IV." Instead, she said we would stop the Heparin until we could figure out where & why I was bleeding. She knew I was worried and she calmed me down and said we were going to fix it and that it was just one more piece of the puzzle that is my health these days.
I want to be upset about all of this. I want to cry about it. I know a lot of those emotions are coming from the cocktail of heavy drugs I've received in the past 24 hours. I keep reminding myself that God has a plan for my life and that I need to just take each day in stride and not get frustrated over my many "malfunction junctions" but I do wish I knew what their "function" was in all of this. I want so badly to understand why I seem to have to deal with one more problem after another. My body seems to be at war against itself. I feel like as soon as I start to feel like I am making some progress BOOM something else completely unexpected comes up. I want to cry because I feel like just dealing with the months of IV treatments is all I can handle for now. But I'm not crying because I am learning how strong my God is and I feel His strength carrying me through these unexpected additional problems. I know it isn't my own personal strength that is pulling me through because I can feel my desire to fall apart and be a basketcase over all of this. So, this strength is definitely from God. Otherwise I would have packed up my toys, called it a day, and headed to the house already!!!
I am learning yet another important lesson. I looked around the treatment room this morning & my brain kept questioning, "Why are all these other people doing just fine with Heparin? Why can they handle the IV antioxidents? Why are they able to take that Glut push 3 times a week to help oxygen get to their brains? WHY GOD ARE THEY NOT HAVING THE SAME PROBLEMS THAT I AM HAVING?" Well, honestly I don't and probably will never know the answer to those questions. What I'm learning is that it is absolutely futile to ask them. God has a different life plan for every single one of us. I have to stop comparing my life to the lives of others and that really is hard. Yet today God showed me that comparing is really just judgement in disguise isn't it? I'm judging these people because they aren't having the same problems I am. WOW! How self absorbed does that make me? People tell me it's okay to vent and to cry and to complain every now & then and they are right in some respects. We all have a little grieving to do when we are in pain - whether that pain is physical, mental, emotional doesn't matter. But we cannot get bogged down in our grief or we will miss the lessons God is trying to show us. I am ever so slowly learning that I have been judging and feeling sorry for myself for years now. It is only when we stop looking internally and start looking outwardly that we will see how God uses both good and bad times to shape us into who He wants us to become. I wrote in an earlier post about a different outlook on suffering. I wrote about how we all have our own cross to pick up and follow Jesus. Paul spoke about that ever present thorn in his side and decided he would gladly suffer for Christ. Basically, if God felt that Paul was supposed to live the rest of his days with that pain, he would not simply live with that pain, but he would praise God for His wisdom in giving him that pain so that he could learn through it.
Nobody wants a thorn in their side or a cross to bear. But if you look around you I bet you'll start seeing some of these "invisible pains" in the people around you. I know that I am frustrated but when I look around that clinic it no longer matters that I had to be in the ER or that I have some unexplained bleeding. I see others whose physical ailments remind me that I am actually lucky. I'm walking where some of them are not. I'm talking easier while some of them cannot. I'm no longer having those horrible muscle spasms while some of them have full blown uncontrollable seizures almost daily. I will not allow myself to get bogged down focusing on what I don't have because being surrounded by these physical warriors who are fighting daily to just get to where I already am is humbling. So, yes, I have some malfunctions and I don't understand why nor do I understand their purpose. However, I get the feeling that God doesn't feel the need to explain all of that to me in this moment. He is expecting me to cling to Him and allow Him to work through me. I pray that I keep my focus on being positive. I pray that God uses me as He sees fit and places me in the lives of those who might need me or those who I might need to learn from.
I do ask that you pray for me as we try and figure out the source of my bleeding because I do want to regain my health and I want to praise God and give Him the glory for all of it! But I also ask that you pray for every single person I have seen in that clinic. It doesn't matter if you don't know their names - God knows who they are. I ask that you pray for me to have the strength to recognize when I am focusing too much on me and that God will fill me with His spirit so that I can bear my cross with gratitude. I ask that you pray that I look around not in judgement, but in love and that I will be able to see how I might be of help to those around me.
Thank you Lord for allowing me to write this and for reaching me as I type these words. Thank you for allowing me to put my problems in a better perspective so that I can continue to spread your love & your joy to everyone I meet. I know I will fall short, I know I will never be perfect in this life on this earth, but I pray that You use me however You see fit and that these malfunctions only serve to teach me to bend easily to Your will instead of worrying that I won't get to live the life I had planned for myself. The one I had planned might have been an easier road, but I know I would not have learned nearly as much.
Tuesday, July 14, 2009
Gratitude for everything
I wanted to let you all know that I am already making some great progress out here. I am talking well again with just a stutter or two here & there. My brain seems to be functioning so much better. That is due to the Heparin (the blood thinner) doing it's job so that my heart can pump blood & oxygen to those areas of my brain that had been deprived. The thinner blood has also helped with most of my cardiac issues. I am truly thankful for these miracles that I'm seeing everyday no matter how small they may seem to others, I KNOW how big they are to me!
I still am in a good bit of bone and joint pain, but that's to be expected. Today I went and had my bone density scan done at the hospital and will likely find out the results at my next doctor's meeting with will be this coming Monday. Since my Vitamin D is so low they are worried I might already be showing signs of osteoporosis (sp?) and that I may need to take a supplement to help get calcium back into my bones.
The nurse told me today that she & the doctor have been amazed at my progress and that they know my positive mental attitude and my sheer desire and determination to get well are what is behind my making such great strides. I told the nurse that having been sick for most of my life I think there are three things that are absolutely critical for a chronically ill person to have. First is of course faith in God. Faith that He will carry you through the hard times and that He will never give you more than you can bear. Second, the fact that I have support from my husband, my family, my husband's family and my friends helps to keep me focused on WHY I want to fight this so hard! The third and last thing is really important and that is to have a positive mental attitude. You must be able to laugh and find humor in the little things. If you only focus on how bad you hurt, or how sick you are, you are headed for a deep depression. If your focus stays only on the negative then eventually the illness will win. You have to believe that you can fight and that you can beat it. The nurse also said for me to expect to have good and bad days. As I'm sure I've said before, as more of the biofilm gets broken down we will start fighting off the bigger infections - like the Bartonella. When those infections come out they will make me feel really rotten until I can beat them down with the antibiotics and supplements. I told her that the mere fact that I am seeing such wonderful improvement in such a short amount of time lets me know that I am in the right place. I am receiving the right treatment finally & I know that this is a rollercoaster ride so I'm buckled in and ready for whatever may come. I'm just thankful for the chance to get healthy - good days, bad days and every day in between - I'm just so very grateful to be here.
On another note the blood thinner is making itself known in an entirely new way today. I am passing yet another kidney stone. Not a bad one I don't think, I mean, I'm having some sharp pains, but I've had MUCH WORSE! But, for the past 3 years or so I was passing stones without any blood in my urine (TMI??? Sorry...) which is really unusual since stones basically cut their way out of your body. It also seemed to be taking longer for my stones to pass. One stone might take a month to 6 weeks where it used to take a week or so. Apparently my thick blood might be to blame. When the stone would try and cut it's way down the track my blood would clot so fast and surround it until it would just stick in one place for awhile. Now that I'm on the blood thinner I think this one will pass much faster. Unfortunately, I am passing so much blood in my urine that the nurse wants me to keep an eye on that and head to the ER if the bleeding gets to be too severe. I told her I would go if I HAD to but I would much rather just try to pass it here or at the clinic and not deal with the heavy pain meds they dope me up with for a stone. I will pray about that and ask that God lead me to the hospital if I need to go. But I will not try and be "too strong" because I don't need a kidney stone or the pain from one to get in my way of treatment. They can deal you fits sometimes and I'm not going to try and be a hero here! I've got enough going on so know that I will head to the ER if need be. The doctor here already gave me the name of a urologist that works at the local hospital that she's worked with many times before. The hospital is only like a 5 minute drive from here too which is good.
I just can't tell you how very grateful I am to feel like I am starting to see parts of the "old me" returning. I love the fact that I haven't had to stop and think 15 million times as I type this entry! I love the fact that I am feeling stronger and I love the fact that I just feel like I am seeing SOME IMPROVEMENTS after years of only watching helplessly as I seemed to go downhill!!! I believe God is so very good and I know He has led me to this doctor and this clinic to be treated from head to toe while He treats my heart, my emotions, and my attitude. I am grateful that my husband will be here Thursday afternoon and I am so thankful my mom has been here with me taking such good care of me. It has lifted her spirits to see me improving and she & I both know that M will be thrilled when he gets to see how much better I am feeling already! I know I have a long road ahead of me, but I am so very grateful for every little blessing that God is bestowing upon my body right now.
I hope you are all doing well. Oh & my daily Bible verse calendar had a good one today:
"Pray for one another, so that you may be healed. The power of the righteous is powerful and effective." James 5:16
I know how much all of your prayers have helped me - physically and spiritually - and I am grateful for each and every one of them.
I am praising God tonight for all that He has done for me. I am praising Him because I know He is the Great Physician and He is the one responsible for my healing. Simply put, I am praising Him because He alone deserves my praise! So on that note:
"Praise the name of the Lord your God, who has worked wonders for you." Joel 2:26
I still am in a good bit of bone and joint pain, but that's to be expected. Today I went and had my bone density scan done at the hospital and will likely find out the results at my next doctor's meeting with will be this coming Monday. Since my Vitamin D is so low they are worried I might already be showing signs of osteoporosis (sp?) and that I may need to take a supplement to help get calcium back into my bones.
The nurse told me today that she & the doctor have been amazed at my progress and that they know my positive mental attitude and my sheer desire and determination to get well are what is behind my making such great strides. I told the nurse that having been sick for most of my life I think there are three things that are absolutely critical for a chronically ill person to have. First is of course faith in God. Faith that He will carry you through the hard times and that He will never give you more than you can bear. Second, the fact that I have support from my husband, my family, my husband's family and my friends helps to keep me focused on WHY I want to fight this so hard! The third and last thing is really important and that is to have a positive mental attitude. You must be able to laugh and find humor in the little things. If you only focus on how bad you hurt, or how sick you are, you are headed for a deep depression. If your focus stays only on the negative then eventually the illness will win. You have to believe that you can fight and that you can beat it. The nurse also said for me to expect to have good and bad days. As I'm sure I've said before, as more of the biofilm gets broken down we will start fighting off the bigger infections - like the Bartonella. When those infections come out they will make me feel really rotten until I can beat them down with the antibiotics and supplements. I told her that the mere fact that I am seeing such wonderful improvement in such a short amount of time lets me know that I am in the right place. I am receiving the right treatment finally & I know that this is a rollercoaster ride so I'm buckled in and ready for whatever may come. I'm just thankful for the chance to get healthy - good days, bad days and every day in between - I'm just so very grateful to be here.
On another note the blood thinner is making itself known in an entirely new way today. I am passing yet another kidney stone. Not a bad one I don't think, I mean, I'm having some sharp pains, but I've had MUCH WORSE! But, for the past 3 years or so I was passing stones without any blood in my urine (TMI??? Sorry...) which is really unusual since stones basically cut their way out of your body. It also seemed to be taking longer for my stones to pass. One stone might take a month to 6 weeks where it used to take a week or so. Apparently my thick blood might be to blame. When the stone would try and cut it's way down the track my blood would clot so fast and surround it until it would just stick in one place for awhile. Now that I'm on the blood thinner I think this one will pass much faster. Unfortunately, I am passing so much blood in my urine that the nurse wants me to keep an eye on that and head to the ER if the bleeding gets to be too severe. I told her I would go if I HAD to but I would much rather just try to pass it here or at the clinic and not deal with the heavy pain meds they dope me up with for a stone. I will pray about that and ask that God lead me to the hospital if I need to go. But I will not try and be "too strong" because I don't need a kidney stone or the pain from one to get in my way of treatment. They can deal you fits sometimes and I'm not going to try and be a hero here! I've got enough going on so know that I will head to the ER if need be. The doctor here already gave me the name of a urologist that works at the local hospital that she's worked with many times before. The hospital is only like a 5 minute drive from here too which is good.
I just can't tell you how very grateful I am to feel like I am starting to see parts of the "old me" returning. I love the fact that I haven't had to stop and think 15 million times as I type this entry! I love the fact that I am feeling stronger and I love the fact that I just feel like I am seeing SOME IMPROVEMENTS after years of only watching helplessly as I seemed to go downhill!!! I believe God is so very good and I know He has led me to this doctor and this clinic to be treated from head to toe while He treats my heart, my emotions, and my attitude. I am grateful that my husband will be here Thursday afternoon and I am so thankful my mom has been here with me taking such good care of me. It has lifted her spirits to see me improving and she & I both know that M will be thrilled when he gets to see how much better I am feeling already! I know I have a long road ahead of me, but I am so very grateful for every little blessing that God is bestowing upon my body right now.
I hope you are all doing well. Oh & my daily Bible verse calendar had a good one today:
"Pray for one another, so that you may be healed. The power of the righteous is powerful and effective." James 5:16
I know how much all of your prayers have helped me - physically and spiritually - and I am grateful for each and every one of them.
I am praising God tonight for all that He has done for me. I am praising Him because I know He is the Great Physician and He is the one responsible for my healing. Simply put, I am praising Him because He alone deserves my praise! So on that note:
"Praise the name of the Lord your God, who has worked wonders for you." Joel 2:26
Saturday, July 11, 2009
A good day
I had a good day today. Of course, it wasn't your typical type of good day because it was still filled with lots of pills, IVs, and my ever present upset stomach. But I measure good days in a different light these days. According to my new measuring stick this was a really good day.
It happened to turn into a really good day because I thought at first it might be one of those really awful days. See, when I washed my face this morning my skin started to peel off. Almost like I had a sunburn or something. Then a rash developed along my jaw line and up to underneath my eye. So, I got to my morning treatment and had to take 50 mgs of Benadryl through my PICC line before starting my IV and then another 50 mgs of Benadryl an hour and a half later. The swelling and itching went away and I came home and slept for a bit.
The treatment room I'm in is set up where it's basically three other girls and me. We're pretty far from the nurses' desk and really kind of away from everyone else. We have decided we like it this way - haha. Anyway, S (whom I've mentioned before) decided we should try to get a group picture during afternoon treatment. She said, "Let's try and look nice girls." I laughed and said, "I might take a bath or wash my hair, but you know I don't have the energy for makeup!!!" So after my nap I had to muster up the energy to at least be clean for the group shot as I had promised. So I took a bath and washed my hair. I got out of the tub tired and so I rested a bit, but then I decided to actually blow dry my hair. I can't remember the last time I actally did that. It felt nice to be clean and have my hair not looking so awful!
I got to treatment and got in my chair. My chair is next to a wall, then there's my friend S, and next to her is our friend, J, and then against the wall is our other friend whose name also starts with an S so perhaps I'll use the initial of her last name which is B. That won't make things as confusing. Anyway, we had all "cleaned up" somewhat and after the nurses gave us our Heparin and our dose of Benadryl one of them had time to take our group photo. It isn't the best picture in the world but when we saw it S & I immediately thought it looked like a summer camp photo! B thought she looked horrible in it but when you have a group shot with 4 girls you never end up with everyone happy. But taking the photo and the jokes we made about the photo afterward were well worth it!
We were crying laughing trying to tell B that we would just caption the photo with, "Pay no mind to the girl in the back, she's some random IV drug user just pushing her Benadryl." I know - such irreverant humor, but ANY kind of laughing in that place is so good to hear. We said many more things about the picture and then J read us all a lot of riddles which made us laugh too because working with our adled brains we hardly figured out even the easiest ones. That made us laugh even harder. Every time J would give us the answer to a real "stumper" we'd go, "Oooohhhhh" as if she had just explained the entire universe to us. It was a good day and we laughed. Here's our photo which S decided to title "Summer Camp '09" - HA!
Since they all have some of the same problems as I do the laughter eventually HAD to stop because our central nervous systems were getting overloaded. So, we each listened to music, or got on a computer, or napped. I had to come home and wear my Alpha-Stim SCS machine that hooks to my ears before I could ever really calm down.
Anyway, I may have worn myself out with the bathing & hair brushing, but I really tired myself out laughing! And it felt so good. So today was a good day. They don't come around often so when they do I want to make sure & share them with you all. I want to make sure you all know I haven't lost my sense of humor about all of this. If I can't laugh during treatments at least once a day then I don't think I'm being positive enough. Attitude is everything when it comes to getting well and getting through these sometimes grueling days.
I thank God for days like these. Especially for the days that J laughs because she has been in constant pain for most of her life! She's only 19 and has basically had one miserable migraine for the past 6 years as well as joint pain that sometimes keeps her in a wheelchair. So to hear her laugh really makes me light up and it soothes my soul. I hope it soothes hers as well!
Thank you Lord for giving me ways to laugh, for providing me with friends in treatment. Friends that are more like war buddies going through this fight with me, understanding the ups and downs like no one else can. Thank you for always reminding me that I am blessed to be where I am health wise even, because there are others who are going through so much worse. Thank you Lord for days like these when the laughter outnumbers the tears by far. I am so appreciative of your never ending love, your constant caring, and the gift of the Holy Spirit which moves in ways that I can't even comprehend. Laughter sometimes is the best medicine and I know it is the one with the least side effects :) I praise your name every time we have a good day like today because I know it comes from you.
Here's the verse I thought fit best for a day like today:
"He will yet fill your mouth with laughter and your lips with shouts of joy." Job 8:22 (NIV)
I hope you all have good weekends and good days ahead. Much love to you all!
It happened to turn into a really good day because I thought at first it might be one of those really awful days. See, when I washed my face this morning my skin started to peel off. Almost like I had a sunburn or something. Then a rash developed along my jaw line and up to underneath my eye. So, I got to my morning treatment and had to take 50 mgs of Benadryl through my PICC line before starting my IV and then another 50 mgs of Benadryl an hour and a half later. The swelling and itching went away and I came home and slept for a bit.
The treatment room I'm in is set up where it's basically three other girls and me. We're pretty far from the nurses' desk and really kind of away from everyone else. We have decided we like it this way - haha. Anyway, S (whom I've mentioned before) decided we should try to get a group picture during afternoon treatment. She said, "Let's try and look nice girls." I laughed and said, "I might take a bath or wash my hair, but you know I don't have the energy for makeup!!!" So after my nap I had to muster up the energy to at least be clean for the group shot as I had promised. So I took a bath and washed my hair. I got out of the tub tired and so I rested a bit, but then I decided to actually blow dry my hair. I can't remember the last time I actally did that. It felt nice to be clean and have my hair not looking so awful!
I got to treatment and got in my chair. My chair is next to a wall, then there's my friend S, and next to her is our friend, J, and then against the wall is our other friend whose name also starts with an S so perhaps I'll use the initial of her last name which is B. That won't make things as confusing. Anyway, we had all "cleaned up" somewhat and after the nurses gave us our Heparin and our dose of Benadryl one of them had time to take our group photo. It isn't the best picture in the world but when we saw it S & I immediately thought it looked like a summer camp photo! B thought she looked horrible in it but when you have a group shot with 4 girls you never end up with everyone happy. But taking the photo and the jokes we made about the photo afterward were well worth it!
We were crying laughing trying to tell B that we would just caption the photo with, "Pay no mind to the girl in the back, she's some random IV drug user just pushing her Benadryl." I know - such irreverant humor, but ANY kind of laughing in that place is so good to hear. We said many more things about the picture and then J read us all a lot of riddles which made us laugh too because working with our adled brains we hardly figured out even the easiest ones. That made us laugh even harder. Every time J would give us the answer to a real "stumper" we'd go, "Oooohhhhh" as if she had just explained the entire universe to us. It was a good day and we laughed. Here's our photo which S decided to title "Summer Camp '09" - HA!
Since they all have some of the same problems as I do the laughter eventually HAD to stop because our central nervous systems were getting overloaded. So, we each listened to music, or got on a computer, or napped. I had to come home and wear my Alpha-Stim SCS machine that hooks to my ears before I could ever really calm down.
Anyway, I may have worn myself out with the bathing & hair brushing, but I really tired myself out laughing! And it felt so good. So today was a good day. They don't come around often so when they do I want to make sure & share them with you all. I want to make sure you all know I haven't lost my sense of humor about all of this. If I can't laugh during treatments at least once a day then I don't think I'm being positive enough. Attitude is everything when it comes to getting well and getting through these sometimes grueling days.
I thank God for days like these. Especially for the days that J laughs because she has been in constant pain for most of her life! She's only 19 and has basically had one miserable migraine for the past 6 years as well as joint pain that sometimes keeps her in a wheelchair. So to hear her laugh really makes me light up and it soothes my soul. I hope it soothes hers as well!
Thank you Lord for giving me ways to laugh, for providing me with friends in treatment. Friends that are more like war buddies going through this fight with me, understanding the ups and downs like no one else can. Thank you for always reminding me that I am blessed to be where I am health wise even, because there are others who are going through so much worse. Thank you Lord for days like these when the laughter outnumbers the tears by far. I am so appreciative of your never ending love, your constant caring, and the gift of the Holy Spirit which moves in ways that I can't even comprehend. Laughter sometimes is the best medicine and I know it is the one with the least side effects :) I praise your name every time we have a good day like today because I know it comes from you.
Here's the verse I thought fit best for a day like today:
"He will yet fill your mouth with laughter and your lips with shouts of joy." Job 8:22 (NIV)
I hope you all have good weekends and good days ahead. Much love to you all!
Thursday, July 9, 2009
Quick update & a thank you here & there...
Okay, so same ol', same ol' here. Did the colon cleanse yesterday and then called M to say I would never do that again. Today I realize that I will more than likely do that again next week & just suck it up no matter how uncomfortable it is for me. It's a way to rid these toxins out of my belly faster so, I will just endure momentary discomfort and pain for long term gains.
I wanted to thank so many of you who have taken the time to email me, comment on here, or even text me to let me know that you are thinking of me. I've gotten some really sweet cards from family & friends both! I wanted to think Stacye & her 3 little ones for my precious prayer bear they made for me! Also, KBF gets kudos for somehow knowing I needed a proper manicure set while I was here. I had left mine at home!!! I am always in awe of all the people out there who are reminding me every single day that they are praying for me, rooting for me and who take time out of their very busy days to let me know all that! I wanted to send formal thank you notes, most of you know I'm a stationary junkie, but my hand shakes so my writing is not so hot. But do know that with every message, text, email, card, comment, etc. I find myself again thinking like Paul in Ephesians where he says "It was so good of you to share in my troubles" - it is so very good of you all to share in my troubles and it humbles me. I also hate to think of how many times I have probably completely missed out on an opportunity to share in someone else's troubles!
So, the latest news is that M will be returning to me on Thursday the 16th and staying for TWO WHOLE WEEKS leaving on Thursday the 30th. That will give my mom time to get herself home and be with my dad and her little baby dog and I don't know which one will have missed her most...haha. I am sure they both can't wait for her to get back! I will be happy to have M here - never gone this long without seeing his face & I don't do well on the phone right now so we really only talk about 10 minutes or so a day. Longer if I start in on a crying jag...poor M...he has endured so much through all of this! Yet he still says he can't wait to come see his sickly wife and his little dog too! Much love for that man - I married very well, if I do say so myself, and I do :)
Thank you all for being so wonderful and sweet and caring and all those other words that just can't express how grateful I am for every little comment, email, etc. This is a hard road, but you all have made it easier with your constant love and prayer. I can't thank you enough.
I was reading Romans during afternoon treatment today and just ran across this & thought I'd share:
"Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in afflication, faithful in prayer. Share with God's people who are in need." Romans 12:11 - 13
I think you have done all of that and I only pray to God for continued patience with my affliction, continued spiritual fervor, and continued faithfulness in prayer! Love to you all!
I wanted to thank so many of you who have taken the time to email me, comment on here, or even text me to let me know that you are thinking of me. I've gotten some really sweet cards from family & friends both! I wanted to think Stacye & her 3 little ones for my precious prayer bear they made for me! Also, KBF gets kudos for somehow knowing I needed a proper manicure set while I was here. I had left mine at home!!! I am always in awe of all the people out there who are reminding me every single day that they are praying for me, rooting for me and who take time out of their very busy days to let me know all that! I wanted to send formal thank you notes, most of you know I'm a stationary junkie, but my hand shakes so my writing is not so hot. But do know that with every message, text, email, card, comment, etc. I find myself again thinking like Paul in Ephesians where he says "It was so good of you to share in my troubles" - it is so very good of you all to share in my troubles and it humbles me. I also hate to think of how many times I have probably completely missed out on an opportunity to share in someone else's troubles!
So, the latest news is that M will be returning to me on Thursday the 16th and staying for TWO WHOLE WEEKS leaving on Thursday the 30th. That will give my mom time to get herself home and be with my dad and her little baby dog and I don't know which one will have missed her most...haha. I am sure they both can't wait for her to get back! I will be happy to have M here - never gone this long without seeing his face & I don't do well on the phone right now so we really only talk about 10 minutes or so a day. Longer if I start in on a crying jag...poor M...he has endured so much through all of this! Yet he still says he can't wait to come see his sickly wife and his little dog too! Much love for that man - I married very well, if I do say so myself, and I do :)
Thank you all for being so wonderful and sweet and caring and all those other words that just can't express how grateful I am for every little comment, email, etc. This is a hard road, but you all have made it easier with your constant love and prayer. I can't thank you enough.
I was reading Romans during afternoon treatment today and just ran across this & thought I'd share:
"Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in afflication, faithful in prayer. Share with God's people who are in need." Romans 12:11 - 13
I think you have done all of that and I only pray to God for continued patience with my affliction, continued spiritual fervor, and continued faithfulness in prayer! Love to you all!
Tuesday, July 7, 2009
What is a "biofilm" anyway?
Well, that's a tricky question. Basically biofilm (in the sense of my situation anyway) is a cluster of cells that can hide and protect various bacteria and viruses. Some bacteria and viruses are able to create their own biofilm in your blood. This is when they are "in hiding" and your immune system can't see them in order to attack them. The weird thing is that even bacteria and viruses that are unable to manufacture their own biofilm as a weapon of defense are sometimes just welcomed into another biofilm community. It's odd. And now I have a picture of the biofilm living in my blood.
The head of a lab in Arizona is doing some reasearch with trying to locate parasites in the blood by using some sort of flourescent DNA staining. My doc here worried I might have some parasites so she had the doctor in Arizona run my blood with this special stain to see if he could find anything. Luckily, no parasites were found, but he said he was able to get one of the best pictures of biofilm free floating in blood during my sample. I'm including the picture here:
Now I know that looks like something from outer space or maybe just a poorly developed picture of some fireworks from the 4th, but it's not. The mass you see where the yellow arrow is pointing is free floating biofilm community. The flourescent dots you see outside of that mass are my regular red blood cells. So if you can see clearly in this photo (not sure if you can) you can see that there are some of my red blood cells living within the biofilm. It's all very scientific and somewhat confusing.
However, it is also very telling. This would explain how they were able to attain a picture of Bartonella in my red blood cells, yet every blood test I've had is negative for every strain of Bartonella. Basically I have Bartonella but's hiding out so well in this biofilm stuff that you basic blood tests won't come up positive for it.
The doctor was very excited to show this to me because it can help explain why none of the other physicians were finding anything in their lab work. Now, my only concern is that if the lab doctor was so easily able to find "one of the best pictures of biofilm" in a smear of my blood, it makes me wonder how much biofilm I have and how long it will take to break it all down. I take pills everyday that are helpful in breaking up biofilm so that's good. I also wonder what else is hiding in that biofilm besides the Bartonella? The tests they are running now are coming up negative for certain viruses and bacteria but I wonder as we chip away at this biofilm, how many infections will we find?
The other news was that I have Parvovirus B19. Yes, it's like the Parvo virus for dogs, but apparently the Center for Disease Control says this is a human strain. I don't believe much of what they say anymore anyway though. Also, my cortisol level was extremely high in the middle of the day signifying that my adrenal glands aren't working properly and we're trying to get that under control.
I am so thankful to be here though. So grateful to God for leading me to this doctor whom He has gifted with such vast knowledge of how the human body behaves - or in my instance - misbehaves. She has been nothing short of wonderful to me and I appreciate every test and every poke, prod or scan she sends me in for.
Oh - that's right, I am VERY LOW in Vitamin D (you should have anywhere from 32-100 to be considered in the "normal range" and I am an 8.6. She also saw where I was low in Potassium and put me on a medication that had my levels back to normal within 10 days. I am also having clotting issues with my blood as I stated earlier but she has doubled my dose of Heparin and my PICC line & I seem to be doing quite well - Thank you Lord!
I will be going in for another colon cleanse sometime this week. I will also be having a bone scan done sometime soon since my calcium levels are off and my Vitamin D is so low. Now, if you're wondering why all of this couldn't be done by the doctors I was seeing. Well, here's the most basic answer I can give you. If a doctor wants to be on an insurance provider's "Preferred Physician List" they have to agree to use only the laboratories that the insurance provider deems okay. Any of these tests could have been done at home - in fact many I had requested to have done and was told there was no need for them. That's because the doctors aren't allowed to pick and choose what lab tests or rather, what labs, they can send specimens off to be tested. In fact, if it were up to the insurance company, which will of course not be paying for at least 60% or more of these treatments & lab tests and will pay NOTHING for the many supplements, I would still be in my bed at home wasting away and just waiting for my heart to give out.
Oh, I tested negative for Rocky Mtn. Spotted Fever and H. pylori and that's good. But the doctor has told me that as we start breaking down these biofilms and getting rid of the smaller infections there's a chance that many things I previously tested negative for will start to show up as positive because we will have removed their hiding spots.
I'm sorry that I couldn't update you all sooner. This has been a lot to grasp and my body is so very tired. I cannot seem to sleep enough and just making it to treatment twice daily is almost more than I can handle. I come home and sleep for ahwile right afterwards. Also, this is a lot of stuff that I like to wrap my brain around before I try to share it all with you. I know my brain isn't as sharp as it once was, but if I can understand what I'm finding out better, then I can of course explain it all to you better.
I trust that God has good plans for me here. I trust that I will find healing in this place. When I start to question, "How long?" or "When we will start seeing results?" or "When could I possibly begin treatments with just oral medications and be at home?", I remember God's time plan is perfect. He is over seeing everything and all these things that some people might call coincidences are really His hand pushing M & I closer to Him. We aren't putting our faith in the doctor here, although she is quite brilliant! We are putting our faith in God sending us to her and we are praising God for the brilliance that he gifted her with!
I cannot tell you how much each day takes out of me, but I can tell you how excited I am to think of the life I have ahead of me. I invision how much better it is going to be than the life I had been living up to this point! Thank you Lord for all you do - thank you for being The Great Physician and divinely sending me to a place for healing. I pray that you give me the strength to endure the treatments and that you work in every cell of my body as I try to regain my health. My hope continues to lie in You and You alone.
OH - yesterday my calendar's verse was:
"This is the day that the Lord has made; let us rejoice and be glad in it." Psalm 118:24 (NRSV)
So, of course once again I find myself singing that song and rejoicing in all that the Lord has done for me.
And as I reflect on God's perfect timing I think of this verse that we all know so well:
"For everything there is a season, and a time for every matter under heaven." Ecclesiates 3:1 (NRSV)
The head of a lab in Arizona is doing some reasearch with trying to locate parasites in the blood by using some sort of flourescent DNA staining. My doc here worried I might have some parasites so she had the doctor in Arizona run my blood with this special stain to see if he could find anything. Luckily, no parasites were found, but he said he was able to get one of the best pictures of biofilm free floating in blood during my sample. I'm including the picture here:
Now I know that looks like something from outer space or maybe just a poorly developed picture of some fireworks from the 4th, but it's not. The mass you see where the yellow arrow is pointing is free floating biofilm community. The flourescent dots you see outside of that mass are my regular red blood cells. So if you can see clearly in this photo (not sure if you can) you can see that there are some of my red blood cells living within the biofilm. It's all very scientific and somewhat confusing.
However, it is also very telling. This would explain how they were able to attain a picture of Bartonella in my red blood cells, yet every blood test I've had is negative for every strain of Bartonella. Basically I have Bartonella but's hiding out so well in this biofilm stuff that you basic blood tests won't come up positive for it.
The doctor was very excited to show this to me because it can help explain why none of the other physicians were finding anything in their lab work. Now, my only concern is that if the lab doctor was so easily able to find "one of the best pictures of biofilm" in a smear of my blood, it makes me wonder how much biofilm I have and how long it will take to break it all down. I take pills everyday that are helpful in breaking up biofilm so that's good. I also wonder what else is hiding in that biofilm besides the Bartonella? The tests they are running now are coming up negative for certain viruses and bacteria but I wonder as we chip away at this biofilm, how many infections will we find?
The other news was that I have Parvovirus B19. Yes, it's like the Parvo virus for dogs, but apparently the Center for Disease Control says this is a human strain. I don't believe much of what they say anymore anyway though. Also, my cortisol level was extremely high in the middle of the day signifying that my adrenal glands aren't working properly and we're trying to get that under control.
I am so thankful to be here though. So grateful to God for leading me to this doctor whom He has gifted with such vast knowledge of how the human body behaves - or in my instance - misbehaves. She has been nothing short of wonderful to me and I appreciate every test and every poke, prod or scan she sends me in for.
Oh - that's right, I am VERY LOW in Vitamin D (you should have anywhere from 32-100 to be considered in the "normal range" and I am an 8.6. She also saw where I was low in Potassium and put me on a medication that had my levels back to normal within 10 days. I am also having clotting issues with my blood as I stated earlier but she has doubled my dose of Heparin and my PICC line & I seem to be doing quite well - Thank you Lord!
I will be going in for another colon cleanse sometime this week. I will also be having a bone scan done sometime soon since my calcium levels are off and my Vitamin D is so low. Now, if you're wondering why all of this couldn't be done by the doctors I was seeing. Well, here's the most basic answer I can give you. If a doctor wants to be on an insurance provider's "Preferred Physician List" they have to agree to use only the laboratories that the insurance provider deems okay. Any of these tests could have been done at home - in fact many I had requested to have done and was told there was no need for them. That's because the doctors aren't allowed to pick and choose what lab tests or rather, what labs, they can send specimens off to be tested. In fact, if it were up to the insurance company, which will of course not be paying for at least 60% or more of these treatments & lab tests and will pay NOTHING for the many supplements, I would still be in my bed at home wasting away and just waiting for my heart to give out.
Oh, I tested negative for Rocky Mtn. Spotted Fever and H. pylori and that's good. But the doctor has told me that as we start breaking down these biofilms and getting rid of the smaller infections there's a chance that many things I previously tested negative for will start to show up as positive because we will have removed their hiding spots.
I'm sorry that I couldn't update you all sooner. This has been a lot to grasp and my body is so very tired. I cannot seem to sleep enough and just making it to treatment twice daily is almost more than I can handle. I come home and sleep for ahwile right afterwards. Also, this is a lot of stuff that I like to wrap my brain around before I try to share it all with you. I know my brain isn't as sharp as it once was, but if I can understand what I'm finding out better, then I can of course explain it all to you better.
I trust that God has good plans for me here. I trust that I will find healing in this place. When I start to question, "How long?" or "When we will start seeing results?" or "When could I possibly begin treatments with just oral medications and be at home?", I remember God's time plan is perfect. He is over seeing everything and all these things that some people might call coincidences are really His hand pushing M & I closer to Him. We aren't putting our faith in the doctor here, although she is quite brilliant! We are putting our faith in God sending us to her and we are praising God for the brilliance that he gifted her with!
I cannot tell you how much each day takes out of me, but I can tell you how excited I am to think of the life I have ahead of me. I invision how much better it is going to be than the life I had been living up to this point! Thank you Lord for all you do - thank you for being The Great Physician and divinely sending me to a place for healing. I pray that you give me the strength to endure the treatments and that you work in every cell of my body as I try to regain my health. My hope continues to lie in You and You alone.
OH - yesterday my calendar's verse was:
"This is the day that the Lord has made; let us rejoice and be glad in it." Psalm 118:24 (NRSV)
So, of course once again I find myself singing that song and rejoicing in all that the Lord has done for me.
And as I reflect on God's perfect timing I think of this verse that we all know so well:
"For everything there is a season, and a time for every matter under heaven." Ecclesiates 3:1 (NRSV)
Sunday, July 5, 2009
No more breaks
So, after my excitement about having 3 whole days off of treatment I realized something. I don't like being off of treatment. It's just like 1 more day that I'm out here. I am still exhausted and don't feel like doing anything anyway, so why not be sitting in my treatment chair twice a day anyway. I guess that's good to know though. To know I am so anxious to get well that I don't really want a break from it all. I would rather just keep on trucking through!
Now, tomorrow morning I have my first meeting with the doctor since I started the IV treatments and supplements, etc. I expect this to be a meeting where she discusses any lab work that has come in over the past few weeks. A lot of the labs take close to a month to get results. I doubt she will be able to tell me anything about how my body is responding to treatment yet because it's just too soon to tell. I'm just hoping that I will get a clearer picture of everything that my body is battling. I mean, we know Bartonella, Lyme, Influenza A & B, coxsackie virus, strep, mono, and some issues with my pancreas apparently. But believe me - this doctor has such a great reputation because she literally tests you for everything under the sun! I'm really interested in finding out what all might have come in.
However, her meetings are so informative that I have to bring a digital voice recorder or I miss half of what she says. Depending on how tomorrow goes I may be able to update on here and let you all in on what I've learned, but it may be Tuesday before that happens. Sometimes I have to get a good mental grasp on what she's shared with me before I can explain it all properly (if I ever explain it properly - ha!). But I will definitely let you all know what we find out as soon as I can. M can't be here for this meeting but we think that's for the best because he is a results oriented type A personality and I think he would already be asking, "So just how long will she be needing IV treatments?" even though he knows that is such a loaded question dependent on several factors. First, we need to know everything I am fighting - what all infections are we up against? Second, we have to see how my body responds to the various drugs and supplements. Third, we have to learn if my body's immune system is going to straighten itself out & fight against the bacteria and viruses instead of against me. Lately it's been really fighting me - so like an auto-immune reaction I've had swollen joints, fever, pain, etc. The doctor is trying to bascially reprogram my immune system so it will stop fighting for the "dark side" and start fighting with me!
I so appreciate your concern, thoughts, love and prayers! Mom will be with me in the meeting tomorrow at 9:00 a.m. (right after my IV treatment) so pray that we will understand everything she tells us and if not - that the recorder doesn't fail us :)
God is good and He is on His throne. I trust that whatever we hear tomorrow is just another part of His plan to work in me and through me. We have faith that this journey is leading us in the direction He plans for us to go.
"Without God it is utterly impossible. But with God everything is possible." Mark 10:27 (TLB)
"Our soul waits for the Lord; He is our help and shield." Psalm 33:20 (NRSV)
"Who shall seperate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or sword? No, in all these things we are more than conquerors through him who loved us." Romas 8:35-37 (NIV)
I pray that all of you have a blessed day today. And I'm saying a prayer for a friend's little boy who is having his tonsils out early tomorrow morning. Add him to your list too if you would. It's hard on little ones to go through things like that - and sometimes even harder for the mommas & daddies to see their little ones hurt! Much love to you all!
Now, tomorrow morning I have my first meeting with the doctor since I started the IV treatments and supplements, etc. I expect this to be a meeting where she discusses any lab work that has come in over the past few weeks. A lot of the labs take close to a month to get results. I doubt she will be able to tell me anything about how my body is responding to treatment yet because it's just too soon to tell. I'm just hoping that I will get a clearer picture of everything that my body is battling. I mean, we know Bartonella, Lyme, Influenza A & B, coxsackie virus, strep, mono, and some issues with my pancreas apparently. But believe me - this doctor has such a great reputation because she literally tests you for everything under the sun! I'm really interested in finding out what all might have come in.
However, her meetings are so informative that I have to bring a digital voice recorder or I miss half of what she says. Depending on how tomorrow goes I may be able to update on here and let you all in on what I've learned, but it may be Tuesday before that happens. Sometimes I have to get a good mental grasp on what she's shared with me before I can explain it all properly (if I ever explain it properly - ha!). But I will definitely let you all know what we find out as soon as I can. M can't be here for this meeting but we think that's for the best because he is a results oriented type A personality and I think he would already be asking, "So just how long will she be needing IV treatments?" even though he knows that is such a loaded question dependent on several factors. First, we need to know everything I am fighting - what all infections are we up against? Second, we have to see how my body responds to the various drugs and supplements. Third, we have to learn if my body's immune system is going to straighten itself out & fight against the bacteria and viruses instead of against me. Lately it's been really fighting me - so like an auto-immune reaction I've had swollen joints, fever, pain, etc. The doctor is trying to bascially reprogram my immune system so it will stop fighting for the "dark side" and start fighting with me!
I so appreciate your concern, thoughts, love and prayers! Mom will be with me in the meeting tomorrow at 9:00 a.m. (right after my IV treatment) so pray that we will understand everything she tells us and if not - that the recorder doesn't fail us :)
God is good and He is on His throne. I trust that whatever we hear tomorrow is just another part of His plan to work in me and through me. We have faith that this journey is leading us in the direction He plans for us to go.
"Without God it is utterly impossible. But with God everything is possible." Mark 10:27 (TLB)
"Our soul waits for the Lord; He is our help and shield." Psalm 33:20 (NRSV)
"Who shall seperate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or sword? No, in all these things we are more than conquerors through him who loved us." Romas 8:35-37 (NIV)
I pray that all of you have a blessed day today. And I'm saying a prayer for a friend's little boy who is having his tonsils out early tomorrow morning. Add him to your list too if you would. It's hard on little ones to go through things like that - and sometimes even harder for the mommas & daddies to see their little ones hurt! Much love to you all!
Friday, July 3, 2009
A new perspective on suffering...
I mentioned in an earlier entry that I started reading a book called “100 Days in The Secret Place” and it is a compilation of the writings of 4 Christian authors from the 1600s. I hadn’t heard of any of them, but it was a gift M & I were given around Christmas and I kept meaning to read it and just didn’t get around to it. In fact, I just tossed it in one of my bags on the way up here without thinking much about it.
I took it to my afternoon treatment session the other day and was just blown away by what I read. It began with the writings of the Archbishop Fenelon of France and he writes about “The Way of the Cross” and how Christians should embrace the cross, or rather, that we should see even the bad times of our life as times to embrace the cross and learn through suffering. As I sat in my treatment chair, I thought about how much I have learned through my own suffering. I know it is not to compare my suffering with what others have gone through, but I know it has changed me and I feel God has a purpose for allowing me to be on this path. It really helps to take my mind off of thinking, “poor pitiful me” when I read about how our suffering on this earth is meant to bring us closer to God.
I wanted to share some of the things from this book that really made me see my own suffering in a different light. I pray I always keep my heart in line with God’s will and that I learn all that He wants to teach me through this time of my life. Reading these writings made me embrace my suffering and see it as a chance to gain a more intimate relationship with God. I know that I would not be able to handle all of this without His grace and mercy and I am thankful that God is using this to teach me so many valuable lessons. Granted, many of them are lessons I should have learned long ago, but stubbornness and pride got in the way. They still do on some days, but I pray that God removes them from me as He is removing these illnesses. I pray that He will heal me from the inside out – from my spirit all the way through my physical body.
Here are some passages from the book from the Archbishop Fenelon of France that I thought might be as uplifting to you in your own life struggles as they are to me during this difficult time:
“See God’s hand in the circumstances of your life. Do you want to experience true happiness? Submit yourself peacefully and simply to the will of God, and bear your sufferings without struggle. Nothing so shortens and soothes your pain as the spirit of non-resistance to your Lord.
As wonderful as this sounds, it still may not stop you from bargaining with God. The hardest thing about suffering is not knowing how great it will be or how long it will last. You will be tempted to want to impose some limits to your suffering. No doubt you will want to control the intensity of your pain.
Do you see the stubborn and hidden hold you have over your life? This control makes the cross necessary in the first place. Do not reject the full work that the power of the cross could accomplish in you.
I have no doubt that God treats you as one of His friends by giving you the cross. God’s way accomplishes His purpose quicker than anything you could think of. God is able to seek out and destroy the roots of self-love. You, on your own, could never find those hidden roots. God can see the entire path of self-love within your heart. Let Him attack self-love at its strongest point.
Pray for strength and faith enough to trust yourself completely to God. Follow Him simply wherever He may lead you and you will not have to think up big plans to bring about your perfection. Your new life will begin to grow naturally.
I know you want to see the road ahead rather than trusting God. If you continue this way, the road will get longer and your spiritual progress will slow down. Give yourself as completely as you can to God. Do so until your final breath, and He will never desert you.”
He then goes on to talk about the “value of the cross” in the next chapter:
“Do you wonder why God has to make it so hard on you? Why doesn’t He make you good without making you miserable in the meantime? Of course He could, but He does not choose to do so. He wants you to grow a little at a time and not burst into instant maturity. This is what He has decided and you can only adore His wisdom – even when you don’t understand it.
I am awed by what suffering can produce. You and I are nothing without the cross. I agonize and cry when the cross is working within me, but when it is over I look back in admiration for what God has accomplished. Of course I am then ashamed that I bore it so poorly. I have learned so much from my foolish reactions.
God uses the disappointments, disillusionments, and failures of your life to take your trust away from yourself and help you put your trust in Him.
You do not see with the eyes of eternity. God knows everything. Nothing happens without His consent. You are upset by small losses, but do not see eternal gains! Don’t dwell on your suffering. Your oversensitivity makes your trials worse. Abandon yourself to God."
I’ll finish up with what he writes about “The Purpose of Suffering” but there is so much more I am enjoying about this book that I’m sure I will share more as I go through it! Here’s the last part I’ll share today though:
"God never makes you suffer unnecessarily. He intends for your suffering to heal and purify you. The hand of God hurts you as little as it can.
Do not waste your suffering. Let suffering accomplish what God wants it to in your life. Never get so hard that you suffer for no reason and for no purpose. Paul says, “God loves a cheerful giver.” How much He must love those who cheerfully give themselves to His dealings.”
I don’t know if all of that touches you as much as it has me over the past few days. I just felt the need to share it. I know that God uses everything in our lives for His purpose if we allow Him to do so. I never thought God made me sick, but I know that God is using my illness and my situation to break me and mold me into who He desires me to become. I pray that every single day that I wake up and want to ask, “Why me, Lord?” that I remember that I do not see with the eyes of eternity and that I continue to trust that God has great plans for me as I go through this struggle in my life. I know there will be future struggles as well, but I trust that the more I learn to give in to His will, those struggles will not last as long as if I try and resist them. I want to learn as much as I can through this time of my life and not waste a single moment by trying to second guess God’s will in all of this. I pray that M and I both learn to continually lean on God for strength even after this trial is over. I pray that we hold firmly to our faith in God’s plan for our lives from here on out.
I hope you all have a wonderful 4th of July weekend! Thank you so much for reading my ramblings and for commenting on them and especially for your many sweet prayers. I am so blessed to call you all my friends.
“God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it.” 1 Corinthians 10:13 (NRSV)
I took it to my afternoon treatment session the other day and was just blown away by what I read. It began with the writings of the Archbishop Fenelon of France and he writes about “The Way of the Cross” and how Christians should embrace the cross, or rather, that we should see even the bad times of our life as times to embrace the cross and learn through suffering. As I sat in my treatment chair, I thought about how much I have learned through my own suffering. I know it is not to compare my suffering with what others have gone through, but I know it has changed me and I feel God has a purpose for allowing me to be on this path. It really helps to take my mind off of thinking, “poor pitiful me” when I read about how our suffering on this earth is meant to bring us closer to God.
I wanted to share some of the things from this book that really made me see my own suffering in a different light. I pray I always keep my heart in line with God’s will and that I learn all that He wants to teach me through this time of my life. Reading these writings made me embrace my suffering and see it as a chance to gain a more intimate relationship with God. I know that I would not be able to handle all of this without His grace and mercy and I am thankful that God is using this to teach me so many valuable lessons. Granted, many of them are lessons I should have learned long ago, but stubbornness and pride got in the way. They still do on some days, but I pray that God removes them from me as He is removing these illnesses. I pray that He will heal me from the inside out – from my spirit all the way through my physical body.
Here are some passages from the book from the Archbishop Fenelon of France that I thought might be as uplifting to you in your own life struggles as they are to me during this difficult time:
“See God’s hand in the circumstances of your life. Do you want to experience true happiness? Submit yourself peacefully and simply to the will of God, and bear your sufferings without struggle. Nothing so shortens and soothes your pain as the spirit of non-resistance to your Lord.
As wonderful as this sounds, it still may not stop you from bargaining with God. The hardest thing about suffering is not knowing how great it will be or how long it will last. You will be tempted to want to impose some limits to your suffering. No doubt you will want to control the intensity of your pain.
Do you see the stubborn and hidden hold you have over your life? This control makes the cross necessary in the first place. Do not reject the full work that the power of the cross could accomplish in you.
I have no doubt that God treats you as one of His friends by giving you the cross. God’s way accomplishes His purpose quicker than anything you could think of. God is able to seek out and destroy the roots of self-love. You, on your own, could never find those hidden roots. God can see the entire path of self-love within your heart. Let Him attack self-love at its strongest point.
Pray for strength and faith enough to trust yourself completely to God. Follow Him simply wherever He may lead you and you will not have to think up big plans to bring about your perfection. Your new life will begin to grow naturally.
I know you want to see the road ahead rather than trusting God. If you continue this way, the road will get longer and your spiritual progress will slow down. Give yourself as completely as you can to God. Do so until your final breath, and He will never desert you.”
He then goes on to talk about the “value of the cross” in the next chapter:
“Do you wonder why God has to make it so hard on you? Why doesn’t He make you good without making you miserable in the meantime? Of course He could, but He does not choose to do so. He wants you to grow a little at a time and not burst into instant maturity. This is what He has decided and you can only adore His wisdom – even when you don’t understand it.
I am awed by what suffering can produce. You and I are nothing without the cross. I agonize and cry when the cross is working within me, but when it is over I look back in admiration for what God has accomplished. Of course I am then ashamed that I bore it so poorly. I have learned so much from my foolish reactions.
God uses the disappointments, disillusionments, and failures of your life to take your trust away from yourself and help you put your trust in Him.
You do not see with the eyes of eternity. God knows everything. Nothing happens without His consent. You are upset by small losses, but do not see eternal gains! Don’t dwell on your suffering. Your oversensitivity makes your trials worse. Abandon yourself to God."
I’ll finish up with what he writes about “The Purpose of Suffering” but there is so much more I am enjoying about this book that I’m sure I will share more as I go through it! Here’s the last part I’ll share today though:
"God never makes you suffer unnecessarily. He intends for your suffering to heal and purify you. The hand of God hurts you as little as it can.
Do not waste your suffering. Let suffering accomplish what God wants it to in your life. Never get so hard that you suffer for no reason and for no purpose. Paul says, “God loves a cheerful giver.” How much He must love those who cheerfully give themselves to His dealings.”
I don’t know if all of that touches you as much as it has me over the past few days. I just felt the need to share it. I know that God uses everything in our lives for His purpose if we allow Him to do so. I never thought God made me sick, but I know that God is using my illness and my situation to break me and mold me into who He desires me to become. I pray that every single day that I wake up and want to ask, “Why me, Lord?” that I remember that I do not see with the eyes of eternity and that I continue to trust that God has great plans for me as I go through this struggle in my life. I know there will be future struggles as well, but I trust that the more I learn to give in to His will, those struggles will not last as long as if I try and resist them. I want to learn as much as I can through this time of my life and not waste a single moment by trying to second guess God’s will in all of this. I pray that M and I both learn to continually lean on God for strength even after this trial is over. I pray that we hold firmly to our faith in God’s plan for our lives from here on out.
I hope you all have a wonderful 4th of July weekend! Thank you so much for reading my ramblings and for commenting on them and especially for your many sweet prayers. I am so blessed to call you all my friends.
“God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it.” 1 Corinthians 10:13 (NRSV)
Thursday, July 2, 2009
Yes, I'm still here :)
Sorry I haven't updated lately but this will only be a quick one. Just didn't want you all to be worried. I have had a rough couple of days pain wise - bone and joint pain getting worse, exhaustion, etc. However, I'm making it through. Got my Bicillin shots after my morning treatment today and will be back there at 3:30 for afternoon treatment.
However, after that I have a 3 day break from treatment for the holiday weekend. Well, I have a break from the IV antibiotics at least. I'll still be taking all the supplements, oral antibiotics, doses of Heparin & doing saline flushes through my PICC line twice a day though. But not having to actually go to treatment at 6:30 am & again at 3:30 pm will be a nice break. Mom and I might even attempt to get out of the apartment - GASP! But I am going to try and write a better entry over those 3 days because I have a lot to say (I know, shocking isn't it, that I would have a lot to say) but I can't always get my thoughts out well while I'm dealing with the side effects of treatment.
Thank you all for keeping me in your thoughts & prayers. This is not an easy road, but God has led me here for a reason and I trust in His plan. I do miss that husband of mine though. We're hoping he'll be able to fly in next Saturday and stay for 10 days but we're not sure yet. This is the longest we've been apart since we've known each other! I talk to him every day of course, but talking is really hard for me right now. I stutter a lot and it takes me a long time to find my words so sometimes it's more frustration to try and talk than it is to just send him an email.
Hope you all have wonderful 4th of July weekends!!!
OH - and me & mom meet with the doctor on Monday morning at 9:00 am! Hoping we will hear results of more of the labs that have come in and have a better picture of what all I am battling. For now I'm just taking it one day at a time. If I were to focus on how LONG this might take I think it would bring me down. Instead I choose to see that God has me here for His purpose and I will patiently wait for His perfect timing on when I get to go home.
Much love to you all!
However, after that I have a 3 day break from treatment for the holiday weekend. Well, I have a break from the IV antibiotics at least. I'll still be taking all the supplements, oral antibiotics, doses of Heparin & doing saline flushes through my PICC line twice a day though. But not having to actually go to treatment at 6:30 am & again at 3:30 pm will be a nice break. Mom and I might even attempt to get out of the apartment - GASP! But I am going to try and write a better entry over those 3 days because I have a lot to say (I know, shocking isn't it, that I would have a lot to say) but I can't always get my thoughts out well while I'm dealing with the side effects of treatment.
Thank you all for keeping me in your thoughts & prayers. This is not an easy road, but God has led me here for a reason and I trust in His plan. I do miss that husband of mine though. We're hoping he'll be able to fly in next Saturday and stay for 10 days but we're not sure yet. This is the longest we've been apart since we've known each other! I talk to him every day of course, but talking is really hard for me right now. I stutter a lot and it takes me a long time to find my words so sometimes it's more frustration to try and talk than it is to just send him an email.
Hope you all have wonderful 4th of July weekends!!!
OH - and me & mom meet with the doctor on Monday morning at 9:00 am! Hoping we will hear results of more of the labs that have come in and have a better picture of what all I am battling. For now I'm just taking it one day at a time. If I were to focus on how LONG this might take I think it would bring me down. Instead I choose to see that God has me here for His purpose and I will patiently wait for His perfect timing on when I get to go home.
Much love to you all!
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