Patience is a virtue that must be practiced

I couldn’t type an update yesterday because yesterday was horrid. I woke up and the first thing I said was, “I don’t want to go to treatment.” It reminded me of times I would whine to mom that I didn’t feel like going to school. Looking back, perhaps I should have listened to myself and just stayed in bed.

I have learned that these treatments are really chemotherapy but our culture has taken that word to mean cancer treatment. In fact, the definition is “Chemotherapy, in its most general sense, refers to treatment of disease by chemicals that kill cells, both good and bad, but specifically those of micro-organisms or cancer”. I am taking IV drugs to kills MANY micro-organisms so that is chemotherapy. However, the drugs I take aren’t like the poison that cancer patients have to receive, thank goodness! But, the nurses say we will often experience similar side effects like nausea, muscle weakness, and hair loss. In fact, yesterday morning the girls in my room told me about how they were losing their hair. Apparently that can start early or may take 3 months or more. This did nothing to elevate my mood of course and I guess I again questioned, “WHY ME?” but I’ve learned to stop asking because I might never know why I am having to go through this, I only know to follow God’s plan as He leads my steps.

I came back from my morning treatment so nauseated I did not even want to be on the bed. I wanted to lay low down on the floor as though that would cure the nausea. I got into the bed finally but my body hurt so much and I was so frustrated that I was having another rollercoaster ride of “good day, bad day, good day…etc.,etc.” that I just cried. I was so weak and mom was trying to feed me some chips and help me drink my water. I felt helpless and to a certain extent I was just feeling hopeless. I finally took my valium and ativan and tried to just rest and I did sleep for awhile.

But when I woke up I was still feeling rotten and thought, “I really don’t want to go back. I don’t feel up for it.” I got to treatment at what I thought was the right time and was told I was 5 minutes late & that I couldn’t get my second dose of Benadryl halfway through treatment. I really just lost it & started crying. I mean, I’m no Benadryl junkie but it helps with the itching and otherwise unpleasantness of the IV antibiotics as well as helps keep your brain calmed down. I despise crying in front on people but some things just can’t be helped. I was so mad that I basically sat there in silence for the entire two hours. At first, I tried to explain that I was new & that on my time sheet it said 3:45 but I was told I didn’t read the sheet properly. So, I tried to harness my rage as I told the nurses how I understood they couldn’t make exceptions for every rule and that I was sorry for getting so upset, but inside I was screaming! The bad part of all these organisms that I’m trying to kill is that they affect the brain in so many ways. Mood swings are common place. I went from crying to thinking if I just had enough strength I might could wrap my IV tube around that nurse’s neck. Seriously, how awful is that? She was merely doing her job and I was seething about it the whole time.

I was silent in the car with mom on the way home but then got my “IV Treatment Schedule” list and read it again. The way it was worded only a medical professional would understand. Actually, I must say it was poorly worded and that most medical professionals would have done a better job of explaining their rules and the exceptions to their rules. That’s when I just screamed and pitched a really good fit. Mom can attest that this might have been my best fit pitching done since I was at least 3 years old. I told her I didn’t understand why I was here anymore. I said I was so tired of this crap and that I wanted to go home. At least at home I wasn’t forced to interact with people nor was I treated like a complete imbecile. I told mom I thought we should pack it all up and just leave. All in all I cried until I couldn’t cry anymore. And to the untrained eye it would have seemed that I was crying about not getting Benadryl, but it was more than that. I was crying to God again. I wanted to know what lesson I was supposed to be learning through dealing with the nurse that some of the patients refer to as “the Benadryl Nazi” (like the soup Nazi on the Seinfeld episode that would get mad and yell “NO SOUP FOR YOU!”).

I was crying out to God because I want this to be easier even though I knew when I came out here that treatment would be miserable. I wanted to think that I could be different and that I could remain calm and upbeat and all in all just sail on through. I mean, isn’t that what we think of when we think of having a prayer answered? That as soon as our prayer is answered we should be happy go lucky and all our troubles should be lifted immediately? I was railing and moaning about how hard this was on me when in reality all I asked of God was to get me to a doctor who could help me. He did that. I prayed that I would have the strength to endure everything – and I know now that I do.

Last night I prayed some more. I prayed that I wouldn’t have to see that nurse today. I prayed a little prayer that maybe 2 of my favorites would be working instead. I wanted to scrap yesterday all together and start anew. And guess what? When I got there this morning there were my 2 favorite nurses all ready to go and being sweet to me. So thank you Lord for answering another prayer for me even though I know I have to be tested by fire at times to really learn the lessons you need to teach me.

The best thing about yesterday is that God let me see the lessons to be learned from it. First, I need to work on my patience and my temper outbursts. It won’t be easy, but it will be worth it. Second, He showed me that I could get really angry again. I know that seems weird to say, but I have been feeling really helpless for a long time and to feel that ferocity in my body again actually reminded me of the person I used to be – strong, bold, unafraid to take on anyone or anything. It’s been awhile since I have seen that side of me and while it definitely doesn’t need to come out all the time, I was thankful to find out it was still down in there somewhere. God gave me the ability to debate, to reason, to rationalize and I know that He has a plan that will utilize those abilities sometime later. Of course, it won’t be to pitch a fit about Benadryl, but He allowed me to feel that strength in me so I could see I had the mental strength to continue this fight. He allowed me to see that those traits might be polished and honed for me to use for His good once I learn how to control them!

It wore my body out to get that mad. But in a way, it felt good to feel so strongly about something again, even something as trivial as a dose of Benadryl. I woke up today and realized I am fighting to get well and it will not be a passive battle! It will be a war that I have to wake up and face each and every day. He has gotten me to this place of healing and He will lead me through – I don’t doubt that for a second. Maybe He just wanted to remind me of everything I have lost so that on another day when I don’t want to get up and go to treatment, I will remember that I am fighting to get back that vigor and strength. I have a feeling His plan includes molding me so that He can show me when to fight and when to step away and take another look at the situation.

This morning’s treatment was good. I felt better when I got home, weak & nauseated yes, but better. I’m about to take a nap and rest up for the second battle of the day around 3:30 but definitely no later than 3:40 or I won’t get my second dose of Benadryl and those poor nurses don’t need me causing an uprising this afternoon. I’m learning something new from all of this every single day. I think the recurring theme seems to be patience though. Patience with myself, with the treatments, with the other patients, and with the nurses who run the clinic because I can’t be showering God’s love for others around if I’m unleashing all my venom on them!!!

Pray that God gives me patience. Pray that he gives M patience too because when I finally talked to him last night he was ready to board a plane headed to KC with a baseball bat to knock down some doors and get his wife some Benadryl!!! Love him so much for that, but we’re both going through a lot and we ALL (me, M, my parents, my sister & her family) need your prayers because this is not just my story, it’s our story. It’s our reality for now and it will always be a big part of our lives. Pray we all learn what God wants us to learn from this experience.

Now off to nap. And here’s my verse for that:
“I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.” Psalm 4:8

Sharing the little victories :)

I have felt much better today now that I'm on the new meds to help me digest food properly. Treatment went better this morning and my stomach is appreciating the much needed break away from the supplements. In fact, I almost feel human!

But I just wanted to share that I washed AND dried my hair this afternoon! Mom helped some of course, but I can't explain how that simple act felt like such a victory! I was going to just go for washing it & let it air dry but then I figured I'd feel better with a dry head. I am so proud right now & I know that sounds funny, but it's the little victories that make up my days now. Plus, I know S will probably appreciate the smell of my clean hair in treatment this afternoon since our chairs are so close together - ha!

Thank you all for your prayers. I'm going to rest a bit after my big accomplishment and will be headed to treatments within the hour. Love to you all!

And the hits just keep on coming...

Overall today started off horribly. However, it ended as well as it could I guess. This morning my body decided it wanted to revolt. It did not wave the white flag of surrender – it was a mutiny I tell you. In fact, I feel as though my internal organs staged a coup and were trying to gain control over their dictator, a.k.a. me.

Now, for those of you don’t want to know the gory details, you might have a tough time with this one, but you can quit reading. I have always felt this was supposed to be an honest account of what I’m dealing with though. Remember my mantra – the good, the bad, & the ugly? Well, perhaps ugly should also be read as gross medical issues? That might be more truthful. Now I will go ahead and tell you of today’s events.

Yesterday I went and had the colon cleanse or colonic. Apparently there were many toxins that were released into my body afterwards. That is when my body decided to let me know it was done with this treatment stuff, please & thank you. Basically I woke up to go to treatment this morning and immediately got sick (vomited, whatever – it’s all gross I tell you). I pushed on and went to the clinic. Mom had to help me in and the nurse came to talk to me and ordered a shot of an anti-nausea drug. My body said, “Oh you’re not getting off that easy. If you aren’t going to get sick we’re going to send out the alarm to all the muscles to start cramping and twitching.”

Even when I stood up and leaned against the wall for the injection, as soon as it was over I slid right down the wall onto the floor. The nurse pretty much lifted me back into my chair. But I pushed on through. But even with the Ativan and Valium my body wouldn’t stop the violent jerks and shakes. So I had to drink some magnesium chloride with some water to try and settle the muscles down. I got two whole doses of IV Benadryl and my body refused to remain still. But people, I am determined to win this war. My body can revolt all it wants to because in reality the mere fact that it’s doing so let’s me know that this treatment is working. I am getting all that nasty stuff out of my system and that’s the goal.

The bad thing was that the doctor didn’t want me getting the Bicillin shots today since my body was already weak. She also said for me to lay off the supplements for a couple of days to try and get my body agreeable again. So I cried a little at the thought of missing out on yet another drug to fight this with. The nurse told me that she understands my desire to jump right into the deep end & go to war, but that we have to fight the smaller battles first or my body won’t have the strength for the war. Then it was suggested that I get a “helper stick”, aka walker, while I am going through treatments. One of those canes with the three prongs on the end to help me with my balance. I recoiled at the mere thought of having to use one of those – aren’t those just for old people? Apparently they are for anyone who can’t seem to balance or walk correctly, even 34 year old women like me. The nurses did try to soften the blow by adding, “You know, just for while you’re going through treatments and need the help.”

When mom came to pick me up seeing the physical difference in my body upset her I think. My entire stance was different and I couldn’t form words well and stuttered a lot. It upset me too. I came back to the apartment and needed help just getting into the bed. After my second Ativan I was finally able to sleep for about 2 hours. I prayed for strength & before my nap I sent out an SOS prayer text message to a friend. I woke up, ate some lunch, and I prayed for strength again. God gave me the idea to just forget all about what a bad morning I’d had. I got the feeling that I should go into afternoon treatments and let everyone know that I would be starting my Friday all over again with a better outcome. I went back to treatments this afternoon feeling stronger and able to walk a little better. I’m still having trouble talking well but I’m getting there. I felt weak when treatments started but just decided to dig in my heels and do the best I can to fight all of this. The sweet nurses brought me an ice pack for my neck to help with the nausea and it did.

The doctor may have gotten some new test results in because I was given a prescription for Creon 20 and the nurse who handed it to me said the doctor thought it would help in my digestion. I of course went straight to the source of all medical knowledge, Google (lol), and found out it is a pill made up of enzymes that help break down food. In fact, webmd.com (yet another place full of valuable medical resources – ha – don’t worry I checked Mayo Clinic & John Hopkins as well) had written this for the description of Creon 20: “This medication contains digestive enzymes to help break down and digest fats, starch, and proteins in food. It is used in conditions where the pancreas cannot make or does not release enough digestive enzymes into the small intestines to digest the food (e.g., chronic pancreatitis, cystic fibrosis, cancer of the pancreas, post-pancreatectomy, post-gastrointestinal bypass surgery).”

This would explain why I have done nothing but lose weight no matter how much I eat. It would also explain why I am deficient or low in so many necessary vitamins and minerals. Most of all, it would explain why my stomach has been revolting every time I try to eat. When you are getting treatment up here you the doctor has monthly meetings with you but as labs come in she prescribes different medications. She will often have her nurse tell you simple things like, “You have the flu so go get this medication”. But I’m beginning to think when test results are more complex or difficult to explain she sends the prescription via the nurse who simplifies it by saying, “The doctor said this should help you with your digestion.” I believe I will learn more about my pancreas and what might be going on with it when I’m able to meet with her at length. I think she goes into much more detail about what lab results have revealed so far about your body at your monthly meeting. It gives you a set time to ask any questions and she helps you get a true understanding of her treatment protocol.

So overall I decided to see my body’s revolt as a step in the right direction. The hardest part of treatments is the knowledge that you will feel a lot worse before you’re able to feel better. Since I felt really rotten today I’m choosing to believe that is proof that I am working on getting better. There will be bad days and I just have to keep my brain focused on the end result instead of giving in to the “doom & gloom” of feeling so badly. Take that body – you’re not going to overthrow this dictator!!! I’m saying we’re getting well and I mean what I say!!!

God is good and He is on His throne! I know nothing is impossible for the Lord. He is my strength and He made me see that I can handle these “bad days” and I can lean on Him and watch as He turns them into “good days”. The key is to let God have control over my brain instead of allowing my emotions to suck me down. I know that a year ago I would not have had this mental strength but God has been working on me in that area. He knew that I would have to endure the physical suffering, but thankfully He is showing me that I do not have to give into the mental suffering. He is my creator and He knows how to strengthen my mind, my spirit, and even my tired old body! He can do anything and I pray that I constantly remind myself of just how great my God is!

“It is you who made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you.” Jeremiah 32:17 (NRSV)

Just one of those days

I'll keep it short because I'm not feeling well. I'm hanging in there though, just having one of those days when everything seems to fall apart.

The doctor had me go in for a colon cleanse and if you don't know what that means, well, I'm not going to explain it. I think it was just a bit much for my body to handle right now. However, it will help get rid of some of the toxins in my body and hopefully help rid me of the coxsackie virus a bit too. So it was treatment this morning for 2 hours then a 2 hour nap then 2 hours of colon fun (including the time it took to drive there and back) and then back to the clinic for 2 more hours of treatments. When I got to the clinic this afternoon and they mentioned I was supposed to have my Bicillin shots today I just cried. I had it in my head that I was getting them on Friday. Since I have yet to shed one single tear in clinic or during treatments the nurse immediately said, "We can just do it tomorrow okay?" and that made it better.

I forgot to add that since they realized I was allergic to Sulfa drugs I can no longer have the "Glut push" I wrote about earlier. The one that is supposed to help get oxygen to the brain? Apparently it has sulfa in it which would explain why my heart got all weird feeling when I pushed it through the PICC line even though I went very slowly - taking 27 minutes to push 20 ccs is really slow. The fact that yet another helpful thing has been removed because of my body's allergic limitations is frustrating at best. And today I just couldn't seem to get out of my funk.

I was going to wait until tomorrow to update when I will hopefully be in better spirits, but then I figured if you're reading this & wanting to go through it with me - well here again is the bad & ugly part of sharing all of the good, the bad & the ugly.

I know tomorrow will be better, even with the Bicillin shots. I know God is still in control and I have no doubt that He is with me through this journey. I just have to continue to have faith in Him and pray that the good days outnumber the bad ones. I have so much to be thankful for that I really hate to complain. I am so thankful that I'm here & finally getting treatments, no matter how hard they are on my body. I am so very grateful for a husband and a mother who are more than willing to take shifts on coming here to care for me. I am so blessed to have a sister who knows how to make me laugh even when I want to cry and a father who is willing to let his wife move up here for weeks at a time even though I know he likes it better when she's home. So, yes, it was a bad day but overall I still have to focus on how many good things are present in this bad day. Some dinner, some pills/supplements, some prayers and some rest will likely lead to a better day tomorrow.

I may have shared this verse before, but it doesn't matter really because it's the one I'm clinging to today:

"I will satisfy the weary, and all who are faint I will replenish." Jeremiah 31:25 (NRSV)

I know He will replenish me and I will go on to fight this battle feeling stronger tomorrow. The nurses were so sweet to me today and said I have yet to complain or question the treatments or cry from the pain or anguish so they told me I'm allowed to have bad days. They said they wish they could clone me because I'm a model patient. I figure it's only because I've had to be a patient for most of my life. So there, a hidden talent I didn't know about - I am a good patient. Thanks for all your love, concern and prayers. I hold them fast to my heart on days like these.

Here's a fuzzy picture of me in treatment - I took it with my phone. Just wanted you all to see that I'm still smiling.

And here's one of the arm with the PICC line - I just stare at that plastic tube pumping all that "get-well juice" into me & think about how I'm one more IV bag towards my goal!

See, not too bad - just some get well juice working its magic :) Thank you Lord!!!

Massively confused but ever amused

So today I found out that the doctor is putting my on twice the amount of Heparin (blood thinner) since I am having trouble keeping my PICC line from getting clogged. The nurse also said she would switch the antibiotic the doctor had prescribed for my whopping cough to a Z-pack & would have it sitting in my treatment chair this afternoon. When I got there I saw the envelope & gave it to mom to go get it filled. Mom gave me the bag tonight & I saw that it wasn't a Z-pack but it was actually Bactrin which is a Sulfa based antibiotic and I'm allergic to sulfa!!! Geesh. So tomorrow I will take that back & see if we can get it changed to the Z-pack.

The doctor also ordered that I stop the IV antioxidents for now because of the nausea. I told them I didn't want to be putting myself behind - I'm very happy to do whatever I need to do in order to get well even if it isn't pleasant. I told them I could handle the nausea if the antioxidents would help me get well faster. The nurse said I'm not like most patients. Apparently passing 100+ kidney stones makes one see pain & discomfort in a different light. She said most patients are always complaining about trying to get off certain supplements or certain drugs because it gives them headaches, upset stomachs, etc. She told me I was actually doing the opposite & I was pushing my body too hard. The doctor doesn't want me to push too hard because it will only prolong the illnesses. I'm just so ready to get on with the plan & get some good results that I don't dwell on the uncomfortable parts. I've been in pain for a long time now & I guess I've just gotten used to feeling this way. I knew that IV drugs & supplements would make me feel worse before they made me feel better but apparently I'm too sick to push as hard as I would like. So, I stopped the antioxidents today. The good thing is that is one less hour in that chair in the morning & I don't come home feeling so moody and uncomfortable.

I'm confused about the remaining tests I have left to take. I'm confused about why I got the wrong antibiotic. I'm confused about when I actually meet with the doctor again. I'm confused about just learning this new routine. I'm confused most of the time because my brain isn't getting good blood flow or oxygen. I forget things as soon as someone says them to me. But I'm trying to see everything in the best possible light. I believe God is helping me with that because even though I'm massively confused, I am also very amused.

I am amused by my new treatment friend, S, who sits in the chair next to me. My chair is next to a wall on my right and she is next to me on my left. She is 19 and reminds me a lot of me at that age. I often forget that there is a 15 year age gap between us because she's mature for her age & she has a really good mental outlook on this whole treatment process. I love that she laughs every day and focuses on all the positive things! She also does & says all sorts of things that crack me up. She's extremely talented & makes really cool jewelry, t-shirts, and is an excellent photographer. And yesterday morning I was told of another skill she is working on - the hula hoop. It's like 6:45 am and we're just getting hooked up to our IVs and dosed with Benadryl when she looks at me out of nowhere & says, "Do you know how to do any hula hoop tricks?" At first I asked her to repeat herself because I didn't think I understood her. But I had and that's when I laughed and said, "Yes, actually I do." Those who know me well could tell you I mastered the hula hoop as a child and later in my college years I even won a contest for my hula hooping skills...lol. So the fact that after knowing me for about 5 days, she just had this 6th sense that she was sitting next to a fellow hula hoop person made me laugh so hard. Then she told me she's working on learning some new tricks. I have no doubt she will master them quite soon. As soon as I can muster up the energy I am going to join her & try and see if this old body can remember how to hula hoop without breaking a hip - lol.

So yes, treatment is exhausting and frustrating and slow. Bad news seems to come out every day, if not for me, then for some other patient. At times you hear other patients in the room just crying because we all have brains that are altered and overwhelmed. But then there's the good times I will take with me like S & her hula hooping ways. She even made me a shirt today with a picture of David Bowie dressed like his Goblin King character from the movie "Labyrinth" on the front & on the back it says "Dance Magic Dance". Again, those who know me well understand that Labyrinth is one of my all time favorite movies from when I was 11. The fact that she wasn't even born when it came out makes it even cooler that she knows it and loves it like I do!

I'm not feeling so great, I'm very tired, and things aren't fun, but I thank God for giving me S to sit next to me who makes me laugh even when I want to cry. And who could easily make me laugh until I cry - ha.

This afternoon I started reading "100 Days In The Secret Place" and it has been very eye opening for me. I'll share some of it later on another day because I'm tired now. But thanks for reading & listening & just going through this rollercoaster ride with me. I don't feel isolated with all of you out there reading and praying and I even feel a little insulated (if that makes sense) having S and a few other special treatment friends to help me make light of this difficult time in our lives.

This verse makes me think of S and my other treatment friends who have welcomed me with open arms and open hearts allowing me to confide both my deepest longing (to be healthy) and my deepest fears about the whole process of getting healthy. They make me smile and bring me peace:

"Blessed are the peacemakers, for they will be called children of God." Matthew 5:9 (NRSV)

I hope something made you laugh really hard today. I think God loves to hear His children praise His name and I also think He loves to hear us laugh as we share His love with one another.

And today's winner is....

....you guessed it, another lab result came back showing I have another infection. This time the winner is whooping cough. No, seriously, I'm 34 years old and I have whooping cough. So for those at home keeping who are keeping count, the total infections found so far are: Strep, Mono, Influenza A& B, [Editor's note - I forgot to correct myself on the previous spelling of another virus they found - it's the coxsackie virus] & now whooping cough. The various deficiencies so far are: low potassium, low magnesium, and low Vitamin D. And we still have plenty of labs to wait on so who knows what the final total will be??? I'm making light of this because I'm just too tired to face it and cry like I would like to do. So, to me I will laugh until I start coughing...whooping cough that is! See, it all lightens the mood :)

The nurse said they were going to put me on oral Erythromycin (sp?) for the whooping cough when she spoke with M. However, I hadn't mentioned to M that the last time I was on that antibiotic I broke out in hives. So M has put a call in & left her a message to see if there is another drug we could use. I would rather they give me shots or an IV antibiotic that could fix the whooping cough because my stomach cannot handle much more of this. With all the IV drugs and the supplements, the bathroom is almost coming in 1st as the room I spend the most time in. Too much info...I know....sorry but I lost modesty years ago when it comes to my health issues...lol.

Today was a rough morning in treatment and I ran some fever last night so I've been having aching muscles and my joints aren't feeling so fabulous either. I am hoping for a better treatment experience this afternoon. On Mondays, Wednesdays & Fridays we get a "Glutathione Push" before starting our IVs. I think this is supposed to help our brains get better oxygen. All I know is it means I have to be there 20 more minutes because it is pushed at a rate of 1cc a minute & the dose is 20 ccs. Even with all my nesting efforts, I still can't find a way to truly make my chair comfortable. I think it's more that my entire body is uncomfortable so I shouldn't blame the chair I guess.

I know I usually close with a Bible verse but I'd like to close by typing out the lyrics to a song that has been playing on my MP3 player almost everyday during treatment. I don't know if this is an original song, but it's on the new cd by Kari Jobe which I highly recommend, btw. LOVE IT! Anyway, the title is "Healer" and to hear her sing it will bring tears to my eyes at times. Here are the lyrics that I cling to in my hard times:

You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease

I trust in You
I trust in You

I believe You're my healer
I believe You are all I need
I believe You're my portion
I believe You're more than enough for me
Jesus, You're all I need

You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease

I trust in You
I trust in You

I believe You're my healer
I believe You are all I need
I believe You're my portion
I believe You're more than enough for me
Jesus, You're all I need

Nothing is impossible for You
Nothing is impossible for You
Nothing is impossible for You
Nothing is impossible for You

A new day

After I wrote all that last night and prayed, I felt better and got some rest. I didn't feel like "hopping to" this morning at 6:00 for treatment, but I got there. I found out then that on Sundays we only have the IV antibiotics instead of the antibiotics followed by the hour bag of antioxidants. I was thrilled with that because not only do the antioxidants make me feel nauseated, it also meant one less hour in that chair!

The nurse gave me the syringe of Heparin which is the blood thinner they give first. The patients push their own Heparin, then the nurses push a syringe of saline to "flush" the line. Then most patients get a syringe of Benadryl to push before hooking up to the bag of IV antibiotics. I had told the nurses the past couple of days that it seemed hard for me to push the Heparin. Like I was pushing the plunger on the syringe but it wasn't going anywhere. We thought it was due to the lack of strength in my hands so today the nurse tried to push the Heparin for me. She found it was very hard to push as well. This is not good news. I haven't had the PICC line for a whole week yet and apparently my thick blood is trying to clot the line. So, it was decided that we will push another syringe of Heparin after I'm done with the IVs to try and keep the line clear.

When I went back this afternoon for treatment I was able to push the Heparin myself a bit easier. The nurse thinks it would be best for us to continue to push a second dose of Heparin at the end of my treatments in order to help my thick blood not clot the line. If the line clots that basically means I would have to get another PICC line put in. And I DO NOT want to go through that because they would likely have to use my right arm. You aren't supposed to lift more than 5 lbs. with the hand that your PICC line is in and since I'm right handed it would be difficult to have a new line put in that arm. So please pray that the double doses of Heparin daily will help thin my blood and keep this line useable. I also think the double dose of the Heparin helps with my pain because thick blood can cause alot of joint and muscle pain. I still hurt a lot, but it is not near as bad as it once was.

That's the medical part of the update. The mental part is that I had such a better day today. I cut back on the Benadryl as much as I could (I have to have at least 150 mgs to keep my histamine levels low). I also skipped a dose of Valium which helped me feel a little lighter. I didn't feel like I was under such a fog. I did my normal nap between treatments of course and am about to head to bed now. I am still exhausted, but I spent a lot of time praying today. Praying for all the people around me that are suffering so much more than I am - more than I care to even imagine. I have a new attitude about all of this now because God's allowed me to see that I am so very lucky to have gotten here before things got worse and progressed. I feel blessed to be able to walk out of my treatments under my own steam and not with the aide of a walker or in a wheelchair.

I talked to M today and he went to church with a friend of his and really enjoyed the sermon and he said he was praying for every patient in the clinic. He too got to see first hand how lucky we are compared to some of the others that are in treatment. We both seemed to have turned a corner with our attitudes and I thank God for soothing and comforting us both. We are learning to truly lean on God every day for our every need.

Thank you for all your prayers and know that I feel they are what helped me feel so much lighter today. Knowing there are so many people out there who are concerned about me and who love me enough to read this and check on me has really humbled me. I pray to keep that perspective, to be humble, meek, and in awe of what He can do.

I hope you all had a good Father's Day - I did miss getting to spend time with my daddy today. However, I am so very thankful that I have such a wonderful father on this earth who would walk on hot coals if it meant I would be well. He's doing without his wife for a few weeks just so I can have someone here to help me. I feel so lucky to have him here as my father on this earth and to have my Father in heaven who both love me so very much.

I read some really good verses while I was in treatment this afternoon. This one got me:

"But I call to God and the Lord saves me. Evening, morning and noon I cry out in distress and he hears my voice." Psalm 55:16-17

God heard my cries of distress last night and He calmed me and gave me such a better day today. Thank you God for always hearing my cries and always carrying me through those rough, dark days to show me the brighter days ahead.

Messing with my head

I'm having a really bad night tonight. I feel nauseated. My stomach is cramping and bloated. I am so exhausted but my brain is running on overdrive. I know all the meds I am on are a big part of the problem because they do mess with my head. But tonight is the first time I just want to cry and cry and I have no real reason why.

Of course I miss M and I feel like I've been having treatments for weeks not just days. I am trying so hard to stay positive and sometimes it feels like an unattainable goal. Part of me knows that I need to be, no scratch that, I MUST be here. But there's a smaller part that wants me to just pack it up and just go home. However, the fact remains that I have to be here. I have to fight all these infections because they are the root of my cardiac problems and I know that my heart couldn't take much more of that cycle I had fallen into where my pulse was either in the 170s or in the 50s.

I knew when I came here that this was not a "quick fix" or an "easy road". But I felt it was the only place that could get me healthy. When I am in the treatment room I look around and I thank God that I am not as sick as so many of the other patients. I pray for them in their efforts to regain their health. It helps give me perspective on where I am and I feel blessed to still be able to function as well as I am. But, it's hard to be around these people as they suffer because you find out some have been doing treatments for over a year and I cannot fathom how hard that would be. I know I don't want to find out either.

I try so hard to stay positive but today I felt so much negative energy around me, so much sadness, so much pain, that I couldn't shake it off. I've had some of the patients tell me that the Bicillin injections (like the ones I had yesterday) would really mess with their head, causing them to be moody or depressed. I'm hoping that's why I am feeling this way now because then it would mean this sadness would fade away in the next day or so. Of course, I will continue to get Bicillin injections every Friday until the doctor can get rid of the chronic strep. So maybe I will just end up having "weepy Saturdays" - who knows.

The IV antibiotics are no fun either with their many side effects like upset stomach, nausea, etc. Then there's the fact that all of these bacteria running amuck in my blood bring their own special treats to the party that's happening in my body - like the bone and joint pain, the muscle aches, and the headaches and exhaustion. Add to all that the Ativan, Valium & Benadryl and you can see why I might be crying right now.

I know God has a plan for me and as I've said before, I trust that plan. I guess I am just groaning right now. I am only human and so of course I wish that this was easier. Not just for me, but for M and for my family too. I hate these infections and I wish there was a magic pill that I could take to make them all just disappear, but there's not. There's PICC lines, IV meds, supplements and the feeling that I am among the living dead. I'm alive, but I have no life outside of my illness. I have no life outside of my treatments.

Okay, that's enough of that. I'm too tired to make sense and I'm too upset to write anything of worth. I just wish that my brain could function better and sort out the emotional side of this from the practical side. But for now they're all jumbled up together. I am trying to focus on getting well but it seems I keep finding myself being jealous of other people because they're healthy. That's a horrible thing to feel and I have to keep reminding myself that it's just a temporary emotion. I pray that God takes that feeling away because it wants to fester and it wants to grow inside me. I pray that God works in my mind as well as in my body. That He heals all of me. I pray He gives me the strength to just go through this journey one day at a time. Mainly I just pray that I feel His comfort and His love when I have nights like this where I want to just crawl under the covers and hide. I know He can do all things and I pray that He leads me in every step I take down this hard road to wellness. And that He carries me when it all gets to be too much, like tonight. I pray that He will direct my doctor and me in every decision about my treatment. Tomorrow I am going to try and not take as much of the Benadryl to see if I might feel a little more like myself. I may do the same with the Valium. I have to take the Ativan because without it I have the muscle spasms/seizure type things and you can't have those when you're stuck in a treatment chair getting IV meds for 5-6 hours of every day.

I'm sorry if this isn't the message you wanted to read. I'm sorry if I didn't find a way to make it uplifting. But if I am going to be true to my word, I said this blog would be ALL ME - the good, the bad & the ugly. So, I just unleashed some bad and some ugly and I can't apologize for it because I need you all to pray for God to show me how to get through all of this without falling apart mentally or physically. I don't know when I will see the doctor again - maybe in a week or two? I know they will take blood on Thursday to check and see how my body is reacting to the meds. Pray that my body will make great strides and that if it doesn't that I will be mentally strong enough to handle that too.

I will close with this verse which I just flipped to and found very fitting for my current state of mind:

"I am the Lord, and there is no other; apart from me there is no God. I will strengthen you."
Isaiah 45:5

I know this too shall pass. I just have to focus on the fact that this is not my life - this is my "temporary life" and I will come out on the other side stronger in all ways, physically, emotionally and spiritually. I thank you God for your comfort. I thank you God for friends and family who have continued to reach out even as I withdraw into unhealthy isolation. I thank you God for counting each one of my tears. In fact, that makes me think of a verse my precious friend, Christy, always shares with me:

"Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him." Psalm 126:5-6

It's amazing to me how reading just a couple of Bible verses can allow the Holy Spirit to calm me, to soothe me, and to comfort me. Because I started typing this weeping and as I finish those tears have dried. God's word works miracles. I trust in that and in Him.

My treatment life

Sorry it's taken so long for me to update on here. It's been a really rough few days. The meds & supplements I'm on are breaking down the biofilms and other stuff where all these bacteria and viruses have been hiding out. That's good because we have to get them out of hiding so the medication can get to them and kill them. However, it's also bad because I apparently have a lot of bacterial infections and viruses that have just been hiding out and lying dormant in my body. As the biofilms break down these infections and viruses come out into my body and start moving around causing me to feel really lousy.

Maybe this is a better way to explain it. I've had mono hiding out in my body for 20 years. Most people get mono (aka Epstein Barr Virus) once and their immune system builds an antibody for it and within a month or so their symptoms go away & they feel better. They usually never have "active mono" again but that isn't because it has left their system. It's because their immune system recognizes it & keeps it from flaring up again. My immune system doesn't do that. Which would explain how I've had "active mono" 5 different times. It seems my immune system has never worked well with fighting infections and viruses. But now we're attacking them where they live - almost like we've gotten Bin Laden out of that cave he's been hiding in. Once they are out they want to wreak havoc on me and they have been,

This treatment is hard and long. However it's a good sign when you get worse symptom wise because it means you're flushing all the stuff out of hiding & the drugs can kill it. For now I am dealing with an active case of mono, an active case of strep, an active case of Influenza A & B. That's just what has come out in 4 days of treatment. So if you can imagine having strep throat, mono, and the flu all at the same time then you can come close to understanding how I feel physically.

Then there's the drugs like the IV antibotics, IV antioxidants, and IV Benadryl. The antibiotics are battling everything and my body is already so weak that I can't help in the fight. I can only feel the battle going on inside me. I eat as much as I can to help keep the "good fighter cells" filled with energy. I take supplements to help boost my circulation, supplements to help strengthen my immune system, supplements to help my body detox or get rid of the bad bacteria, etc., etc.

The doctor says I'm really low in magnesium and I'm low in potassium so I'm on drugs for that too. We're getting my body ready for what comes next really. These smaller infections aren't the hard ones. The hard ones have yet to surface - like the Bartonella. We can see it hiding in my red blood cells but we have to get everything else knocked out first before my body can handle waging a war on the really tough infections.

So, I'm sorry if I'm not keeping in touch as well. Please know that I still feel every prayer and that God is constantly with me, battling for me as my body tries to remember what healthy bodies actually do. He has given me the strength to do things I never thought I'd be capable of. I am so appreciative that He holds me up when I want to cry and just fall down and quit.

M left today and my mom came in town last night. So glad Mom's here but I really hated M leaving. He'll be back in a few weeks but it's hard to be without him physically as I try and keep up this fight.

For those of you who want to know my daily routine it's something like this:
6:00 a.m: wake up, eat breakfast, take Valium & Ativan, brush teeth and go to clinic in my pjs.
7:00 a.m: Heparin (blood thinner) has been pushed through the IV, 1 dose of IV Benadryl has
been given, and 2 hour IV antibiotic bag has been started
9:00 a.m: 2nd of IV Benadryl has been given, IV bag is switched to the 1 hour IV antioxidents
10:15 am: Leave clinic feeling nauseated. Get to apartment & take 2 supplements on empty
stomach and 30 minutes later eat some type of protein & take all the pills that have
to be taken with food. Take another Ativan.
11:00 am: nap
2:00 p.m: Wake up, take the supplements that are taken on an empty stomach, eat more
protein, drink some liquid supplements, take another Ativan & a Valium.
3:15 p.m: Head to clinic for 2 hour bag of antibiotics and 2 more doses of Benadryl
5:30 p.m: Leave clinic come take empty stomach supplements, wait 30 minutes, eat dinner,
take the "with food" supplements, drink more supplements.
6:30 p.m.: Lay in bed and try to rest
9:00 p.m: Take last Ativan & Valium. Take 2 Benadryl pills and a sleeping pill & hopefully
fall asleep by 10:00.

This schedule is repeated 24/7. I get IV therapy on weekends on the same schedule as during the week. It is hard. It is all very hard physically, mentally and emotionally. I know I am withdrawing from people right now but I am also connecting with people in treatment who can really relate to what my entire life has been like. I don't want to withdraw from the general public but right now my focus has to be on treatment and only treatment. I'm having so many cognitive problems that I have to write down each pill I take on a sheet or I will likely take it again 5 minutes later because I just can't remember anything anymore.

I'm not sure I did a real good job on this entry. I'm not sure about a lot of things I do anymore. But I do know that I pray and God helps me get through it. For example, today I got my first Bicillin shots (sp?). These suckers are miserable. It's like having someone inject Elmer's glue into your butt. They give you Lidocaine patches to wear for 2-3 hours before you get the shots (on on each side - yippee) to help with the pain. Yet still people winced when they said, "OOOHHH, you're starting your Bicillin shots today? Good luck". I was already feeling like crap and had no desire to be put through any more pain. I laid on the table and as the nurse gave the injection on the first side I prayed repeatedly, "Lord please take this pain for me. Lord, please take this pain for me." I said it over and over and did the same as she gave the second injection. And guess what - He did take that pain for me. I'm not saying it didn't hurt, but it was NOTHING compared to what I've heard from other patients and the nurse even looked surprised when she said, "You didn't even shed a tear!" I thanked God and I took my sore fanny home to sit on a heating pad.

Even through all of this I know this place is where I am meant to be. I know God sent me here because it is the right place for me to be healed and as much as I hate treatments, I told M last night that even though I wish so badly that I could be at home, I wouldn't go home now. Nope. I've started the fight and now I just hunker down and stick to it for the long haul constantly praying that I continue to cling to God and the routine of getting healthy.

Forgive me if I don't update often. I know in a few weeks I will be feeling stronger and will be able to keep everyone updated more often. As for now just pray that I continue to focus more on "treatment mode" and do everything the doctor asks me to do so that I don't stay here any longer than absolutely necessary. My job right now is to thank God for getting me here and to obey Him because He sent me here for a reason and I don't want to waste one minute of my time here.

Also, please pray for the other people I have met in treatment. Some of them are in constant pain and they have been through so much. Please pray that God touches them and that He helps them get over the anger of being sick and that He helps them let go of that mindset so that He can heal them from the inside out. I don't know how people could go through this if they didn't believe God was right by their side!

And to finish (finally beause this took 2 hours to write...slow brain for real!) I felt these verses were good ones to cling to:

"The Lord does not see as mortals see; they look on the outward appearance, but the Lord looks on the heart." 1 Samuel 16:7 (NRSV)

"I praise you because I am fearfully and wonderfully made; your works are wonderful and I know that full well." Psalm 139:14 (NIV)

"I wait for the Lord, my soul waits, and in his word I put my hope." Psalm 130:5 (NIV)

And I am waiting on the Lord and I put my trust, my faith, and my all in His word and in His strength. Please know that I feel every single one of your prayers and they lift my spirits and allow me to trust in God even more knowing that you are all out there trusting in Him right along with me.

Speechless

Well, you know that title is misleading since I've never been at a loss for words of some sort. Yet I cannot really describe to you what this day has been like. We got to the hospital at 7:15 a.m. for the PICC line to be inserted. I thought, "Okay, they shoot my arm with some numbing meds and then get a good line in there & seal it." I was oh so wrong. My normal copious amounts of useless trivial medical knowledge didn't include what exactly a PICC line was. I just knew what it stood for.

So, I go into the operating room - yes, operating room, although the procedure was just supposed to take 15-20 minutes. They lay me on the table and have an x-ray machine and ultrasound machine around the table. There are 2 nurses and a doctor for this small "minimally invasive" procedure. I chat happily away with them as they drape everything but my little left bicep which they cover with orange stuff that's supposed to clean the area. The doc comes in gives me the stinging shot of Lidocaine (sp?) to numb the arm. They insert the IV tubing and then, to my horror/shock/surprise they move the x-ray machine over my chest. The nurse is saying, "You've got it in there keep going." and I'm thinking, "Is she talking about that thin black line that seems to be headed for my heart?". She was. This line goes all the way from right above my elbow travels through the vein and into the top part of the heart. I'm too tired to give you the exact location in medical jargon. As I watched this line come close to my heart on the x-ray screen I couldn't help but think of many episodes of House where one of the residents stops him from doing some crazy procedure by screaming, "You're going to puncture their heart!" But I surprised myself by staying calm.

The sonogram of the abdomen was a cake walk anyway, but especially in comparison to the PICC line insertion. Don't get me wrong, the PICC line insertion didn't hurt - it was just an out of body experience to see a tube go all the way to your heart knowing it's going to stay there for 3 plus months. Now I understand all the warnings about not getting it wet & making sure the tubing stays sterile because it would shoot an infection straight to my heart. However, since I get IV antibiotics through it twice a day the chance of that happening is very, very, slim.

Then I went and had my first IV treatment. I felt a little nauseated afterwards and came home crying, wanting to go home and wishing I could just tell everyone that I didn't need to be going through all of this. But the sad fact is that I do need it - every bit of it. I know God will give me the physical and mental strength to go through this, but I had one of those days when I wanted to ask Him, "I'm doing what you said for me to do. So why is this all still so hard?" Yes, I was what I hate most in the world - I was in a state of self-pity.

I took a nap for a good 4 hours and awoke to tell M that we HAD to get comfy bedding for my IV chair. Everyone else's in the clinic had foam padding and comforters and pillows. I had just brought a blanket and a pillow and I wouldn't have even thought to do that had it not been for dear sweet Melissa, my new friend who was here doing this exact same treatment last year. So, with my bandaged arm and under the guidance of Valium and Ativan I got M to drive me to the Super Target. But I wasn't completely stupid. I had on a baseball hat & kept my sunglasses on to keep the ultraviolet lights from causing me to have a meltdown. I also for the first time in my life allowed M to talk me into using one of those handicap carts that you see the old women driving around. I knew I wasn't strong enough to walk through there so it was nice to have it and made it where I could go & pick out what I thought best for the IV chair. I also got me a memory foam pad for the bed here to help it be a bit more like home.

Tomorrow I will arrive at the clinic a little before 6:30 a.m. with two twin size egg crate foam things to put on the chair. I also purchased an alternative down blanket that will lie on top of the foam and then I can wrap it around me. On top of that I will be using a nice cotton blanket and the piece de resitance - a body pillow. M couldn't even get frustrated at the total cost because it was the first time he's seen me smiling in a few days. And really, who's going to deny a girl certain comforts for her IV chair that will be her home base for 6+ hours every day, 7 days a week? Especially when that girl can point to her bandaged arm and say, "M - they ran it all the way to my heart & I could see it on the screen!" This just makes his stomach turn a bit & he says, "Just get whatever you need. It doesn't matter. I just want you comfortable." Oh, but how I do love that man.

I'm having to learn that my days are no longer my own. The times that I'm not IN treatment I am trying to nap or take the 16-18 supplements that are still so confusing to me. I did start on this inhaler thing called Relenza where I take one inhalation twice daily for 10 days to help with the influenza A & B. I am having to see that getting well is a full time job on it's own. A hard one at that. Oh, and just so I don't go getting too excited about how healthy I'm going to be the sonogram did show 2 kidney stones in my right kidney so that'll be coming soon...haha. I think I'd welcome dealing with a plain old stone over all this business of getting well!

Truly though, it was a trying day and finally ended on a lighter note with me in a more comfortable bed and making the decision to follow God's plan for me even if it means PICC lines to my heart and swallowing 40 pills a day and drinking various supplement powders mixed into my water. This is the road He had me on & it's going to take all I have in me to not fight Him like I normally do & just accept that He has a purpose for this. I know I will be stronger after this - both physically and mentally. I know that I will look back on my life 30 years from now & think, "That is when I REALLY got to know God!" And when I think like that I'm not speechless from fear of what's going on around me or to me, I'm awestruck that God wants a relationship with stubborn, spiteful, sickly, me. That what He desires most of all that I lean on Him, have faith in His word, and try to allow the Holy Spirit to work in me to show God's love to others all of the time. Not just when I feel good - but ALL the time. Even in the times when I am scared and speechless I want to know I am spreading God's love wherever I go to whomever I meet along this journey.

Thanks again for all of your prayers. And for those who wanted to know a mailing address for me just comment on here & leave me an email address or a way to get in touch with you. M got the official address today but I forgot to ask what it was.

Oh, and to finish off, some of you reading this know how horrible some of these supplements taste so I thought that this verse would be quite appropriate:

"Taste and know that the Lord is good." Psalm 34:8 (NIV)

And for me to keep my eye on the prize at all times:

"This slight momentary affliction is preparing us for an eternal weight of glory beyond all measure." 2 Corinthians 4:17 (NRSV)

Much love to you all!!!

Another day, another infection

So as more lab tests come in it seems they just keep bringing news of more infections. Apparently I have Influenza (both A & B) and something called Tossackie (sp?) but Mark got the info from the nurse so I'm not sure if that's the correct spelling or not. This just means another prescription of some inhaler that helps attack both strains of the flu and two more supplements that should knock out that Tossackie (or whatever it is).

Good news is that we moved into the new place & it is much nicer, gets more natural light and most importantly there are NO upstairs neighbors making it so much quieter. The kitchen is in a better place (mainly where M can see the tv while he makes dinner - haha). We're happy to be in here and feel grateful to have found it.

Bad news is that I am just getting more and more overwhelmed. I made a spreadsheet for the supplements I am supposed to take. Some you take once a day, some twice, some three or four times. Others you take with food while some need to be taken 1/2 hour before you eat or 2 hours afterwards. It is so confusing. There's 16 different supplements and some I can't start until the doctor has finished all the tests. I know it's hard to believe there could be more tests required that what took 42 vials of blood but there are.

Tonight I am tired and worried about getting the PICC line put in tomorrow. I worry about how my body will react to all these medications and supplements. I pray that God will fight these many battles for me and allow me to rest and be somewhat comfortable as a war is waging inside my body. I am fighting hard to stay upbeat, but I know I am where I need to be. It's just that no one would willingly want to do this - take all this medication, have a permanent IV in their arm, be 12 1/2 hours away from their home - so I'm sure you all understand how I can be a bit sad even while I am so very grateful to God for getting me here.

I'll be better tomorrow. Tonight I did too much trying to get into this new place and I ended up breaking out in hives and will need yet another dose of Benadryl. It is a miracle drug I tell you. I'm not writing anything else while I'm sitting here in Debbie Downer mood. I am going to be hopeful instead. I can't change my circumstances but I will not settle to be stuck in this pitiful mood. I am having prayers answered - THANK YOU GOD! The answers might at first bring more troubles, but in the end He will bring me through to the other side & I will be healthy! This is only temporary and I need to focus on that. This too shall pass, right? So, THANK YOU LORD FOR NEVER LEAVING MY SIDE AND FOR ALWAYS ANSWERING MY PRAYERS SO THAT THE ANSWERS FIT INTO THE PERFECT PLAN ONLY YOU KNOW ABOUT!

I will close with this:
"Let us hold unswervingly to the hope we profess, for he who promised is faithful."
Hebrews 10:23

Sleeping makes everything easier

So I slept 8 whole hours on Friday night and got a good nap in yesterday. Then last night I slept for 7 hours and have had an hour nap and a 2 hour nap today. I feel a little more together, although with the Ativan, Valium, and Benadryl dosages I also feel a little loopy. But I'll take that over the exhaustion, mood swings, and severe noise and light sensitivity ANY DAY!

Today we made a spreadsheet to map out all of the supplements I will be taking. It will help me see not just when to take them, but if I need to take the with food, etc. So far she's starting me on 14 supplements and they should help tremendously. Now that I have them on a schedule I can start taking them today and easing into the treatment plan she has set out for me. But when I looked at that big box full of bottles of various pills and powders on Friday afternoon I couldn't fathom how I was going to sort it all out into some sort of cohesive order! All of this has been overwhelming at times and I am so thankful for Melissa and Christy for letting me know before hand that I would feel this way. I can't imagine if M & I had just popped up here with no idea of what to expect - we might have already packed back up & headed home!

I do love that this doctor believes in supplements and diet as a major part of getting my health back. I think the body works as a whole so that diet and hormone or vitamin deficencies would cause a lof of problems even if I got rid of all the bacteria. I like the idea of trying to take the most natural drugs instead of a ton of "band aid" drugs that just cover symptoms. These will actually allow me to heal instead of just keeping the symptoms at bay. Now of course the antibiotics, Valium & Ativan are real heavy duty drugs but they are used a bandaids for the severe shock my central nervous system is going through right now. They will help me handle the actual treatment.

For those who don't know, when you attack and kill multiple bacteria and viruses in the body the waste ends up in your blood stream and can often make your symptoms worse before they get better. At least that's the best definition I have of what is referred to as a Herxheimer's reaction. I love the fact that she wants to be very aggressive in treating me but also is trying to keep me as comfortable as possible while I go through this aggressive treatment regimen.

We started easing into the diet last night. Since I had a bad herx reaction when I went on the strict no-yeast diet last year (which landed me in the ER for dehydration) she knows my body might not be able to tolertate much. That's what the supplements will help with along with the Ativan & Valium. The Benadryl is taken in 50 mg doses at night at then at 12.5 or 25 mg doses during the day as needed up to 200 mg a day. That alone will leave me a little out of it. But I understand that she is trying to get my histamine levels as low as possible before fighting everything so that my allergies don't signal my immune system to attack itself even more.

I'll try and write more tomorrow. We are tired, but we are so very thankful to be here with a doctor who is looking at every possible problem I could have! We have never felt like we could really trust the doctors before and that they were more concerned about getting their paycheck than really helping me (of course there were a couple of exceptions like Dr. G & Dr. H who we both still love). It's just amazing to hear her discuss how my entire body is going through a very understandable process from being exposed to viruses and bacteria from as long as 30 years ago. How those things can wear down hormone reactions and everything else until I ended up in the bed feeling like a 90 year old woman.

Thank you all so much for your prayers and thoughts and showing of support. I do need it now more than ever because this road is definitely uphill from here. But M & I are willing to climb any mountain to get me back to health & we praise God for leading us to a doctor who knows how to teach us to climb that mountain!

We trust that God in His infinite wisdom is using these trials to strengthen our faith and we feel certain that He has plans for us that we can't begin to imagine. We just need to step out in faith day by day and not worry about the day after that. Trusting in Him for every little thing is hard, but we're both learning it's the only way to get the results we really want. We know God is good and He will never fail us.

"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 that loved us." Romans 8:35-37 (NIV)

Sleep and sanity (or lack thereof)

So last night was again a frustrating time of little to no sleep. I've calculated that in the past 4 days I have gotten a total of about 10 hours of sleep. I cried when M woke me up this morning to go to the doctor. I cried like a 3 year old who needs a nap in the worst way - and I do. I didn't even want to do the stupid glucose test (the one where I get to eat all the good sugars & carbs) because I am so exhausted that I thought I'd scream if someone poked another needle in me. I pray that the following is somehow readable and that you're able to understand it because I'm just typing and I have no idea if I'm making sense anymore!

Now having said that I was in no mood to even go to the doctor today I want to explain how I'm continually getting to see how this doctor is so very different from any other that I have seen (and believe me I've seen a TON). She took one look at me today while I was laid out on her couch having huge muscle spasms - the ones that make me look like I'm having some sort of spastic seizure - and immediately started getting things to help me. She had me drink water with a magnesium supplement in it (I'm defecient in magnesium & that can cause the muscle spasms). Then she had a nurse come in & give me a shot of Valium right in the fanny. And I know I said I didn't want to be poked again but when they said a shot of Valium I said, "When, where & how quickly?" - lol. Then the weird thing was this piece of equipment that has a wire (almost like an iPod) with two clips that clip onto your earlobes. They turn it on and it helps with electomagnetic stuff to help calm the brain. Apparently my brain is just firing off electrical signals like crazy and this machine does something I won't even pretend to understand to calm those signals down. All I know is that for the first time in a long time I was able to lay down with almost no twitching within 20 minutes.

She's prescribed Ativan (a drug similar to Valium) for me to take 4 times day for right now. She also has prescibed Valium to be taken as needed. I will be taking so many supplements that I can't even list them all but there's everything from Vitamin D to magnesium and a bajillion more that will help everything from the moods, twitches, stomach problems and my sudden rages.

I just have to tell you that I have had it with the little boys upstairs. They don't just run they run and then JUMP and it is CONSTANT. I would be "somewhat okay" with that if it were just during the day but they were doing that all night last night - even past midnight! I taught preschool so I know that little boys love to run, but I also know it's possible to teach them to walk - at least part of the time. I don't blame the boys for wanting to run, I just cannot handle the noise at all right now. I know I'm super sensitive right now, but the bangs and booms have been so bad that even M wanted to go up there last night & have it out with the parents. If it's bothering him then I KNOW it's bad! We realized over the past few days that there is NO WAY for me to stay in this apartment now. So, I will be moving to another apartment complex. The new place will have me on the top floor and my next door neighbors will be an older couple. M is happy about this but we have to pray that the one furnished apartment that is "available" is ready for us to move in on Monday. It was rented for the whole month of June by a company for an employee to live in while he worked here & he's done & moving out this weekend. But we're hoping the company is ready to unload the apartment as well. The people at the rental office are calling the company to see if they would like to cut it short so we could move Monday. PLEASE PRAY THAT I CAN GET THERE!!!!

Monday is also the only day that I am not having some sort of test done! Then Tuesday is when everything starts! I have the PICC line inserted on Tuesday morning & then right after will have a sonogram done of my belly for the doctor to check on some organs (I forgot which ones she mentioned). I will leave the hospital and head straight to the clinic for the first round of treatment! After that I will be at the clinic every day (weekends included) from like 7:00 - 10:00 in the morning and 3:00 - 6:00 in the afternoon for the treatments. So Monday is the only day I have where M & I wouldn't feel pushed and could actually move our stuff and have time to get settled a little bit. I don't know how my toy poodle will handle another move either. He feeds off my moods and his anxiety is fever pitch right now being in a new place and the upstairs banging is really wearing him thin as well! So, this prayer request is one that is important for my treatment because I cannot handle the noise & if I can't keep myself calm and get rest then I won't heal quickly. This isn't an "I want a nicer apartment" prayer request at all. I like the place we're in and wish we didn't HAVE to move. This is a prayer request for me to get somewhere where I can just heal. I don't care about what it looks like - I just need a decent bed and some QUIET!!!

Okay - I'm done rambling on. There was a lot more info given at the meeting with the doc this morning but I couldn't really participate mentally and she spoke mainly to M since I was having trouble just trying to keep my spasms under some sort of control. I'll digest all of the info once I listen to the recording of the meeting sometime over the weekend. Then when my brain is not running so fast - like it is right now from the happy feet neighbors above - I'll try and write more to explain what all we're finding out about my body and my illnesses.

I'm sending love to you all & I am truly trying to channel God's love in order to "love my neighbor as I love myself" right now!!! I am so thankful for all of your prayers and that God has allowed me to be enveloped in prayer and love as I go through the most difficult trials of this journey. Even though I am at my wits' end I still know that this is all such a blessing.

I just flipped to a couple of good verses for today (thank you Lord for directing my hands & fingers in the process):

"May our Lord Jesus Christ himself and God our Father, who loved us and by his grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word." 2 Thessalonians 2:16-17 (NIV)

"My grace is sufficient for you, for my power is made perfect in weakness." 2 Corinthians 12:9
(and I know how WEAK I am in every sense of the word!!!)

Remembering and relocating

So, the doctor already had the results of my brain spect this afternoon when we met. Since I have friends & family who are nurses let me explain that it was not a contrast dye that was injected via the IV, it was radioactive isotopes. This was not a CT or an MRI. It measures blood flow (I think?) [EDITOR'S NOTE: the brain spect measures blood flow to the brain & since blood carries oxygen then it would also be an idicator of the amount of oxygen the brain is getting in certain areas] and oxygen amounts in areas of the brain. I have told you all that I have been having a lot of cognitive problems like being able to say or pronounce words or forgetting things easily. I know a lot of you might feel that you are "forgetful" but this is a scary kind of forgetful. This is NOT absentmindedness, this is more like having an entire conversation about a book with someone and then completely forgetting you ever had that in depth conversation. Not just forgetting what it was about but not remembering talking with that person about that book ever. I can finally admit to everyone how very scary these things have been. They have been nothing short of terrifying. The reason I can finally admit how scared I have been is because I finally know WHY this has been happening!!!

The brain spect showed me to be "4-5 standard deviations below normal in the anterior lobes bilaterally, left greater than right" and "small areas approximately 2 standard deviations below the norm in the anterior aspect of the frontal lobes bilaterally." So, what does all that gobbedly gook mean? Good question! Apparently you want to be at 0 which would mean you had normal oxygen and blood flow to the appropriate areas. We were told that 5 standard deviations below normal was the maximum. Basically I am not getting oxygen and/or blood flow to areas of my brain and that is what is behind MANY things. Not just the cognitive stuff but also the extreme anxiety and horrible mood swings that I go through. If you don't believe I have some flat out scream and rage sessions just ask M & he will be happy to let you know what it's been like living with the real me 24/7 for the past few years.

The good news is that we know that there is a reason & I am not just losing my mind. The other good news is that I have a written report to shove in M's face saying, "I can't help it, I have brain problems" - JUST KIDDING - I wouldn't do that, at least, not yet - haha. The other news is that we already found out today that I will be staying up here for at least 3 months for IV treatments twice daily. I will be going to another hospital nearby on Tuesday or Wednesday to have a PICC line inserted. That is a "peripherally inserted central catheter" or in normal terms I will have an IV catheter in my vein 24/7 for the next however many months that I have to have treatment. We expected this & we were as prepared for it as possible & truly this is an answer to prayer. However, I will say that it's one of those answered prayers that is hard to accept. You know it's the right thing, you know it's God's will, but you want to wish it away at the same time.

We don't have a lot of blood work back and there are still about 5 other tests that I have to go through. They don't involve hitting a vein & I'll just keep it at that...lol. The doctor believes I have a chronic case of strep to go along with my chronic mono - basically there are all sorts of bacterias living in my blood and hiding out in my own blood cells and sometimes in cysts and biofilms that hide them from my immune system. Also, the assumption is that I have problems with my thyroid hormones and probably a good deal wrong with my adrenal glands. All in all, it's just like they told me yesterday, "You are very ill."

I have felt God with me all day today and feel His presence with me now even though I am crying as I type all of this. I wanted His help to lead me to someone who could and would find out everything that was wrong. I begged Him to take me to a place where I could find help and healing. I handed it all over to Him and He answered every single prayer. That doesn't mean that this is easy. It's faith and from what I'm learning - true, deep and abiding faith is NEVER easy. I've been humbled and at the same time uplifted by all of this. GOD IS THE GREAT PHYSICIAN AND HE HAS HEALING IN HIS PLAN FOR ME! GOD IS GOOD AND HE DOES ANSWER PRAYER. But don't go thinking that means it's easy because the idea of not being in my home for "at least 3 months" is frightening. However, this is God's plan and I know I don't have to be strong to get through this. He will get me through it just as He got me here to begin with. Please don't think I am not so very thankful for His work. I am - I just know this is the very beginning of a long road to recovery. One that will likely take 1-2 years of treatment with IV drugs, supplements, and oral drugs when I do get home. But He doesn't want me to focus on anything other than today. He doesn't want me worrying about tomorrow or next week or next year. He wants me in the present - in this day - in the moment. And this day, this moment, has been so very hard on me physically. So, now I am going to go rest. I am going to allow myself to soak up this information that is so hard to understand even with a brain that functions on all cylinders. Pray that I will continue to lean on God for all of my strength because it's when I try to do it on my own that I fall so very hard.

So many times I want to close with a good verse, but I can't think well and I am so tired so I will just flip one of my books open or go straight to the Bible and see what God leads me to. I find it quite fitting that I was just led to the following verse:

"Then I lay down and slept in peace and woke up safely, for the Lord was watching over me." Psalm 3:5 (TLB - not my usual NIV but I liked this version better for my situation)

Because I don't just need to sleep, but I need to sleep in peace. I thank you all for your love and prayers. I know that is why I am finally getting answers after a lifetime of questioning.

OH - I absolutely had to add this link that my sweet friend Brandie sent me because this song just calmed me down so well & it is truly beautiful:

http://www.youtube.com/watch?v=A3Jv1Hf2oCw

YIPPEE!!!

Thanks for all the prayers because not only did they get the IV in but they had the "IV guru" at The University of Kansas Medical Center come to do it & she did in ONE STICK :) God is sooooo good! I didn't sleep at all last night, probably due to all the overstimulation, so I was also very ready to hit the road at 6:30 a.m. and we just got back from the test. We won't know results until maybe tomorrow? Anyway, I'm going to try and nap before we meet back with the doctor at 2:00 p.m. I just wanted to let all of you know that He does answer prayer! Those people took one look at my arms with their FOUR bruises and didn't mess around with letting just anyone try to stick me! THANK YOU LORD!!!

I'll try and update if we hear anything else during our meeting today, but it's been a rough week and I'm not feeling well at all. So, if I don't update tonight then I will try and do it tomorrow after our morning meeting where we go over whatever test results the doctor has been able to get in 48 hours. Some of the tests won't be in for a few weeks. But that part doesn't matter because I'm just so thankful for what He did for me just now. I know He goes before me in all things and I am not going to worry about test results or that I feel rotten right now because I am just leaning on Him and I think His plan includes me to getting some rest in the next few hours, not worrying.

Lifting my spirits with music

I know it's not Christmas, but this just warmed my heart tonight:
http://www.youtube.com/watch?v=b4ubAh9TLko

It's the 5th grade chorus from New York's city school PS 22 singing "Let There Be Peace On Earth". You may have heard of them because they have become quite famous playing with all sorts of well known bands and musicians.

And if you like that one I really liked the following two performances they did as well:

http://www.youtube.com/watch?v=u_tcE4rWovI (Coldplay's VIVA LA VIDA)

http://www.youtube.com/watch?v=IL0aDXekfyM I'll let this one be a surprise because well, it's just that good :)

Just wanted to share what God used to lift my spirits tonight. Hope you are all sleeping well & enjoy the music!!!

Good is a relative term...

IT WAS A GOOD VISIT! However, good IS a relative term. I say that because it's hard to understand the mindset of someone who comes away from a doctor's visit feeling great to hear the words, "You are very ill." Yet, that's how both M & I feel - we feel elated to know that this doctor understands.

I'm going to try and keep this short tonight because I'm exhausted after everything we went through today and I have 2 very full days ahead of me & want to conserve my energy for when I have to write what all we're finding out.

First things first, I have never in my life had a more thorough physical than I did today. They did a "sinus swab" (basically they use a tiny little wire to just barely scrape the sides of your sinuses - sorry if that's gross) and it was very telling. She showed me the thin wire & said, "If you are keeping infection in your sinuses or if we're dealing with infections in the blood we can tell a lot from these swabs. If you don't have infection(s) then this will just make you feel like you want to sneeze, might make your eyes water but then that's it. If you DO have infection(s) then you might feel a slight stinging but it will only be for a second and then it's over."

I had no worries about this because I had sinus surgery 13 years ago and have unfortunately had to have several scopes into my sinuses, so I thought a thin wire would be nothing. I was wrong. She did the left side and it hurt so bad that I started crying. I have passed kidney stones without crying so you can imagine how bad that had to hurt. She immediately apologized for it hurting and said, "Well, you definitely have some stuff going on in there! Let's get the right side over with real quick." When she did the right side it hurt even worse and I immediately started having a nose bleed. My sinuses felt like they were on fire and I was crying like a 5 year old who just had a shot! The funny thing is she came over and said, "I am soooo sorry I had to do that you, please let me just give you a hug!" And I did and I think we both felt better.

My muscle spasms/twitches came out to show themselves and that's always a good thing for the doctor to see but hard for me to handle. By this time we had gone over my lengthy health history and had the physical and we were supposed to go into the doctor's office to talk before getting the lab work done. I needed help to make it to her office and immediately laid out on her couch. I had been feeling faint and the nose bleed and muscle twitches had set off a chain reaction and I was feeling horrible. She took a look at me & said, "We are going to need to get the nurses to come get you and start an IV of fluids if we are going to get ANY blood from you." That was amazing to me because no doctor had ever been able to just LOOK at me & see that I had low blood volume and difficulty giving more than 2-3 vials of blood without my veins clotting and stopping. So I thought, "YEA!", because as you know if you have been reading my posts, IV fluids make me feel so much better! I knew they would help the muscle spasms and definitely help me be able to give them any blood.

Now, let me say that they needed a lot more than just a few vials of blood. In fact, they needed 42 vials of blood. No, that's not a typo - they needed forty-two vials of blood. I now wondered if a bag of fluid would be enough to get that much blood out of my body! In the lab 5 nurses who start IVs daily stood over me looking for just one decent vein to try and hit. After 3 sticks where each try ended in my vein blowing, we hit pay dirt on the 4th stick and got the IV started and the fluids going. The nurses went and told the doctor how hard it was to find a vein and she realized I have clotting problems. I don't just have low blood volume, I also have THICK blood. So, she ordered a blood thinner be added to the fluids so my vein wouldn't shut down and quit giving blood. Longer story than I wanted to type but it took 2 1/2 hours to get those 42 vials of blood from me. Since there was no other viable vein for them to try and take blood from they had to stop the IV draw blood from that site until my blood started to clot and then they would hook the IV back up and push the fluids until they could draw more blood. This was done 3 or 4 times in order to get everything they needed. I went through two bags of fluid and 2 doses of the blood thinner.

BUT I AM SO THANKFUL FOR ALL OF THAT!!! Why? Because it showed first hand that SOMETHING is wrong with my body and that I need some help. In fact, all of your thoughts and prayers were answered by everything that happened today. The doctor thought I had been through too much to try and run the glucose test I was supposed to have so it's been rescheduled for Friday and I was able to leave and get something to eat! Oh, did I say I had to fast from midnight last night? Well, either way I was actually starving by 3:00 and I decided to treat myself! I went off my "no-yeast" diet for the first time in 1 year & 3 months and had a REAL cheeseburger with a BUN!!! It was awesome. So good in fact that I am making Mark get me another now for dinner - haha. I know that this doctor will more than likely have me on a strict diet (organic, gluten free, etc.) and I only have until Friday to eat whatever I want!!! I'm taking full advantage of that!

Tomorrow we will have to be at The University of Kansas at 7:30 a.m. for a brain spect scan where they will inject contrast dye and do a scan of my brain. Then we meet with the doctor again at 2:00 in the afternoon to finish the talk we never really got to have today since my blood work took so much time and effort. Friday we will see the doctor again at 9:00 a.m. and then I will get to go eat as many carbs and sugars as I want until I am full and come back to the lab for the glucose test. I can't wait for that one - carbs and sugars and ice cream, oh my!!!

So now this has been lots longer than I wanted, but I need to ask you to pray specifically for something for tomorrow morning. I have 4 veins that are now shot and no good however, they will have to inject that contrast dye for the brain scan into a vein somewhere! Please pray that they don't have such a difficult time and they are able to find a vein to get the dye in because otherwise they cannot do the scan and it's an important part of what the doctor wants to look at in my case.

Thanks so much for all your thoughts, prayers and love! I am just so exited to have had a GOOD doctor's visit, even if in my world that means hearing how "very ill" I actually am!

The verse I wanted to share tonight is from a different Bible translation than what I normally read. So I will give the one I like and then follow it with the way it is worded in the NIV as well:

"May you be given more and more of God's kindness, peace, and love." Jude 1:2 (TLB)

"Mercy, peace and love be yours in abundance." Jude 1:2 (NIV)

We're here!!!

I started to write this entry and then just erased what I had written so far. It was just a paragraph of nothing but petty complaints about how the internet hasn’t been working and we have upstairs neighbors who are noisy. I don’t need to complain and honestly each one of my petty complaints has been fixed by my amazing husband who has run all over town from Wal-Mart to Target trying to make sure I have everything I need. He’s out getting a wire now that will allow me to have internet in my bedroom instead of just in the living room. He went and bought me one of those box fans that make a constant whirring noise to help drown out the bangs and booms from upstairs. I was ready to crawl out of my skin with every sound from up there until I met the neighbors and realized that 2 little boys (one is 4 and one not yet 3) cannot help jumping and running. That’s what little boys do best. It also didn’t hurt that I actually met them and saw how very cute they both are. Also, my toy poodle, little m, loved meeting them. They even tried to do “easy petting” and squealed with delight when little m licked on one of their legs. So, I’m not complaining because in the end I have nothing to complain about. My sweet husband has taken care of it all. You’d be amazed at how much noise a cheap box fan can drown out – ha!

I’m just so glad we planned the trip so that we had this “nothing day” in between getting into town and meeting with the doctor in the morning. Well, it was a nothing day for me, but for M it was a very busy and productive day! He knew I needed a nothing day though. The stimulation from the trip has been difficult and today was kind of a crash from all of that. My blood pressure is staying around 78/50 today and so I am tired and that’s to be expected. But the good news is I AM HERE!!! I am finally here after waiting for so long & I will be in her office TOMORROW! It almost doesn’t seem real. Both M and I have talked about how weird it is to finally get here and be so close to a goal that was months away when we started down this road. We have no idea how tomorrow will go but that doesn’t matter – what matters is we are finally here!

We will be at the clinic tomorrow morning by 8:30 and the appointment is at 9:00. The doctor’s assistant has me set up for labs at 12:30, or immediately following the visit with the doctor. We’re told that could be up to 3 and a half hours or longer depending on what all she wants to go over and what all she feels we need to discuss. Now you know why I’m in KC – I’ve never known a doctor anywhere else that will do a consultation for that long! The only down side being that I cannot eat anything after midnight tonight in case some of the lab work she wants run requires fasting. So, I won’t be able to eat until probably around 2 p.m. or so tomorrow. However, since I haven’t had an appetite in months I figure I’ll be okay. I can handle going without food and it’s worth it because I AM FINALLY HERE!

I brought my calendar up that has a Bible verse for every single day and almost laughed when I saw the verses for today. They aren’t in their entirety, but they definitely get the point across and they just happen to be the exact verses I have been aspiring and clinging to for months:

“I have learned to be content whatever the circumstances…I can do everything through him who gives me strength.” Philippians 4:part of verse 11 and verse 13

When I saw those words staring at me from my calendar I realized that He is in control and all I have to do is follow where He leads. M and I are ready to relinquish all of this to Him and to trust in His will for our lives.

Now, for tomorrow I would love it if you could pray for the following things:
1 – That both M and I will be able to remain calm and will be able to express in detail any of the information they might need to help us.
2 – That my brain and my body are able to handle all these things from the consult to the blood work to any other lab works, like x-rays or scans, that might need to be done.
3 – That this doctor and her staff listen and that God will give her the knowledge and insight needed to help me where so many other doctors have failed.

We are putting it all in His hands and I am thankful that He is taking the burden off of me because I didn’t know what to do anymore. I’m going to close with a verse that reminds me of being little. Why? Because it was one of those songs you learned in Sunday school or Vacation Bible School and was so easy to remember and very fun to sing. It used to be that this verse (and the song) only came to mind when I saw a beautiful blue sky or really breathtaking scenery. Lately however I am learning that I should say this verse, or better yet, SING this verse every day that I wake up. Each day we are given is a gift from God – even those days that we often have where all we want to do is just add up all our “petty complaints” like I was so focused on doing earlier. Instead, I am now singing this verse and feeling much more lighthearted now that when I started typing this. That is what God does. I’ve said it before, He reaches me when I write, He holds me when I am still, and He whispers great things to my spirit when I am quiet. And here’s the verse and for those of you who know the song, well, I hope it gets stuck in your head like it just got stuck in mine!!!

“This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:24

Thanks for reading and praying – thank you so much for simply caring!