I need to come clean. Often times, when I write these entries, I write because God is giving me a message or teaching me a lesson that I feel He wants me to share. That’s not the part I need to come clean about though. When I follow God’s direction I find myself feeling more upbeat and positive about the things I’m going through. I realized that if someone reads this they might think I have the best attitude about my situation, or a sunny outlook on the frustration and disappointment I so often feel. Now I believe that God has having me write this entry and not spare any of the details. So, I’m going to take you where I find myself so often, in a pity party feeling confused, hurt, angry, and hurt. Don’t worry though, God won’t let me finish without writing about what He is doing to change all of those feelings that weigh down my heart.
When I started to feel better taking the IV antibiotic Gentamicin, I rejoiced! I wrote about all my improvements and I know many of you rejoiced with me. Then my kidneys stopped filtering the medication well. I had only been on it for close to 3 months but I was seeing so much improvement that having to stop it broke my heart. I’m just now realizing that it broke so much more than that. The longer I was off the medication the more I seemed to slide backwards with old symptoms flaring up again. This broke my belief that I was nearing the end of this painfully difficult time in my life. Instead of the hope I had been feeling, I started to believe that I would never feel any better or make any more progress. I resigned myself to accepting what seemed to be fact – that I would never be able to lead a “normal” life. I stopped asking for big improvements and instead asked God to just heal me to the point where I could do household chores, cook for my husband, etc. Basically, I told Him that I didn’t have to be able to leave the house and deal with the noise of the outside world. I told Him I was letting go of the dream of having the life I really wanted. I even began to give up the idea that I would be blessed with a child and get to experience motherhood. I started trying to focus on the positives of not being a parent. You know - how everyone says they would travel more if they didn’t have children, or take a job they loved instead of one that paid the bills because, well, we all know it’s expensive to have kids! I was trying to give up all my dreams thinking that they just weren’t in God’s plan for me and that I needed to accept and appreciate what I was given instead of focusing on what I couldn’t have. I stopped believing that God had great plans in store for my life. I began to think He just had some sort of “good enough” plans. In short, I had gotten mad, then felt hurt and broken hearted, and finally I started trying to be in an “acceptance” phase.
There’s a part of that logic that is rational. If I focused solely on what I wanted out of life, or where I thought my life would be by the time I was 35, then I would be horribly depressed right now. It was depressing enough when I tried to ask God to take away my desires and show me how to be thankful for the life I had. In fact, when I asked God to do that I didn’t feel any weight lift off of me like I normally do when I try and hand something over to God. That’s when I got really frustrated and angry with God. I questioned why He would give me such desires in my heart if He was not going to bless me with them. I started letting God know how upset I was and then some days I just didn’t talk to Him at all. All of this just made me feel horrible.
You see, I thought it was God who was directing me to what IV antibiotics I should try. First I tried Doxycycline but the side effects were horrible. Did you know that heavy doses of antibiotics can cause mood swings? I didn’t know that until I started to go through all of this. So, we stopped the Doxy. Next was the one I wrote about last – Rifampin. It’s a very strong drug, as I have written before, and mainly used to treat tuberculosis and some types of meningitis. I started it and all seemed well until day 3 when my mood changed dramatically. I felt so despondent. I would lie in my bed and just cry uncontrollably. I had no idea why I was feeling so depressed. I couldn’t find the good in anything. I decided to call a friend from treatment in Kansas City who had been on Rifampin before. I wanted to know if the depression was a side effect, or if it was truly what I was feeling, or if it was part of a Herxheimer reaction – where symptoms will come up because of an overload of toxins in your body. When I told her how I had been sobbing crying she immediately said, “That’s the Rifampin.” So, on day 5 we stopped the Rifampin and within a 24 hour period there was a change in my attitude. After 48 hours I was beginning to feel more like myself. After 4 days off the drug I knew for certain that it was the culprit behind the emotional change and I knew that I would not be able to take that drug.
I realized there weren’t many other IV antibiotics that would be helpful for me. I’ve been on 6 so far and 3 of those I wasn’t able to take due to side effects or allergies. I already know I have drug allergies that keep me from trying many of the other antibiotics, so I started feeling helpless again. I felt awful – both physically and mentally. Spiritually speaking I was at a low point too. I felt like I had been following where God was leading me regarding the medication changes and when they didn’t work I felt let down. To top it all off, my sweet husband has to have shoulder surgery on Thursday. He injured it 4-5 years ago and kept being told to do physical therapy for years – which he did but got no relief from the pain. We finally just asked our doctor, the same one who treats my Lyme, to order an MRI for M’s shoulder. It showed a torn muscle around his rotator cuff along with a cyst and bones spurs that need to be removed. So, I’ve been having to see my constantly loving caretaker in constant, miserable pain and I felt more angry at God. We all know the saying that God will never give you more than you can handle. Well, I have heard people add “I wish He didn’t trust me so much!” after that comment as a joke. I truly felt that way though. I was mad that God would add yet another hurdle for us to jump over. Sometimes I forget that we don’t have to jump those hurdles on our own power – that makes them almost impossible to get over. When we allow God to work in our lives He will carry us over those hurdles. It doesn’t make the hurdles go away nor does it make you feel that there are no hurdles in your life, but it does get you over them – even the highest one. I guess by now you can see that God has been working on me again.
When the Gentamicin started to affect my kidney function I started to take myself off as many of my other medications as I could to ease the burden of my kidneys having to filter so much. This weekend God put something in front of me. It was a bag that held my anti-parasitic medication. I had taken it to my doctor’s office to show him, since I had gotten it from my Kansas City doctor I wanted him to see what it was. We came home that day knowing that I couldn’t take the Gentamicin and I sat the bag down in another room. So, this weekend I was in there and saw the bag and thought, “Hmmm. I wonder if I should get back on this since I’m off the Gentamicin now?” I decided to try it. Within 2 days I was feeling stronger and better. The anti-parasitic medication hits the Babesia. I have Lyme, Bartonella and Babesia. The first two have to be treated with antibiotics but Babesia is actually treated like a parasite with drugs and supplements that are normally used to treat malaria. But, I don’t just credit those anti-parasitic medications for how much better I feel. I credit God because I cried out to Him. I was already down because of how I felt physically, but on the Rifampin I cried out to Him like never before. I cried for Him to carry me, to heal me, to get me through all of this. God is good and He sure did answer.
His answer started to form in my brain. I knew God was pushing me to try and get out in the world again. I felt a tug to get out because I felt God was going to show me what He was doing for me. So, yesterday I decided to have mom take me to the photo shop to print out my Christmas pictures. I had my earplugs, headphones, and seizure meds in a small bag with me in case I needed them, but I was going to try and brave it without them. We went into the photo shop and I was able to download my picture on their computer and fill out the order form. We were told they would be ready in about 3 hours. I didn’t want to go home though, I wanted to see what God was doing for me physically. I had a pair of jeans that I needed to return, so we went to the store and I exchanged them. Then I decided to really push it and go out for lunch. Now this is huge because I haven’t been in a restaurant since March of 2009. Most people don’t notice just how noisy restaurants are – people talking, forks and knives scraping plates, chairs being pushed away from tables, music playing, etc. But we went. It was loud so I put my earplugs in. That made it sound like it would to someone without supersonic hearing – haha. It was a lot of visual “hustle and bustle” too. I have a hard time with a lot of motion around me but I was handling this very well. Mom and I ate and I was absolutely giddy about being there. We left and I took a Valium to calm my brain from all the commotion. Then mom went in the photo shop to pick up my pictures because I knew I had reached my limit for sound sensitivity. I came home and was so happy but so exhausted! Mom helped me get back into my pajamas and into the bed. I hooked up a bag of IV fluids and promptly fell asleep. I was so tired that my husband had to physically shake me awake! I’m a little tired today, but not as much as I have been in the past after short excursions.
You have heard people say, “God is good all the time. All the time God is good.” Honestly, it is true. But, you have to seek God and when you do so, you also have to be silent so you can hear or feel what He is trying to teach you. I had been trying to drown Him out by watching mindless television shows all day or playing on the computer – basically anything that would keep me from communing with God. But, finally I turned everything off and tuned in more to Him. Through my experience yesterday I learned that He is asking that I trust Him more, and give Him credit for the medicine instead of just crediting the medicine itself. I learned that His plan for my life requires that I break myself free from the depression and heartache that the devil loves to use in our lives. I learned I have to tell myself repeatedly that God IS good ALL the time – ALL the time God IS good! I learned that I will always be working on trusting Him and living by faith. We all have to work on our faith constantly because we are human and will fail so often. We must step out in faith more often so our trust and belief can grow even stronger. We do this and through it we begin to have a more mature relationship with God. I’m working on how to literally “live by faith”. I have no idea what God has in store for me, but He has taught me over the past month or so to stop selling Him short! I was putting a limit on what God would do in my life. I wasn’t praying for BIG things because I didn’t believe I would get them. I may not get everything I had in mind for my life, BUT God may have all of those things, and maybe more, in store for me. I have to learn to trust in Him more and more because right when I think my prayers have gone unanswered, He shows me how much more He can do for me – much more than I even prayed for.
I got OUT and I was able to do something I haven’t done in almost 2 years! I ate at a restaurant and I can’t tell you how great that feels. God is working, even when I’m in doubt, or mad, or frustrated – He knows how I feel and He is working. I just have to step out in faith. I was hesitant about getting out – but He pushed me. I was concerned about how loud the restaurant would be – but again I felt Him pushing and I went! I serve a wonderfully loving and amazingly strong God and I am thankful for ALL that He does for me.
Personal sidenote for those of you who know me well and get my Christmas cards every year: The picture on the card of me, M and my little baby dog, well, it came across as a big lie to me. Why? Well, because it took me three days to get ready for it. Taking a shower, painting my nails, fixing my hair, putting on full makeup – even lipstick and having nice clothes on for the first time in 6 weeks or so – well, it sure isn’t our regular day life!! We sat on our deck and used a tripod and self timer to take the pictures and took about 15 before I was ready to collapse – and we all know I don’t go outside often! In the picture I am doing what I instinctually do when a camera is around – SMILING BIG! When I looked at the picture on my computer I laughed so because I look so healthy and happy with my life. The reason that is so comical to me is because right after it was taken I came inside and just laid on the living room floor. M had to take my cardigan off me and my shoes. I looked at him from the floor and said, “This should be my Christmas photo – it’s a ‘true life’ shot!” Now I think perhaps that picture isn’t a “lie” – it may be a picture of what God has in store for me– good health and much happiness!
“I cry aloud to the Lord, and he answers from his holy hill.”
Psalm 3:4 (NRSV)
“He is not far from each one of us. For in him we live and move and have our being.” Acts 17:27-28 (NRSV)
“No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.” 1 Corinthians 2:9 (NIV)
Much love-
K
Tuesday, November 30, 2010
Saturday, November 13, 2010
Just asking for prayers...
I am healing well from the surgery. However, all of the symptoms haven't gone away. We had my post-op appointment with the surgeon yesterday and she said some people experience the nausea, lack of appetite, etc. for more than just one week so we're praying it all passes soon.
We need many prayers right now. I started the Doxycycline and after 3 treatments I had to stop it. Something I never knew before going through treatment is that IV antibiotics can have really weird side effects - physical and mental - or maybe these type of side effects are just for people on long term therapy, or perhaps they just do these things to Lyme patients, I have no idea. What I do know is that the Doxy started making me horribly depressed. I would have accounted it to just having had surgery, or pain medication, etc. but the mental feeling I got was exactly how I felt when I was on Doxy in Kansas City. Back then I thought it was the stress of treatment or from being away from home that kept me depressed. Now I can say with certainty that a majority of that depression came from the Doxy. I was on my third treatment when I started crying for no reason, had bad mood swings and felt so angry all of the sudden. I cried and said, "I'm stopping this bag!" - basically turning the line off so that the Doxy wasn't going into my veins anymore. It only took about 15 minutes for me to start to feel more like myself mentally. I may have been able to handle those emotions more when I was in treatment with other patients who became close friends, but now that I spend most of my time alone I don't think it would be healthy to try and put myself in that mental state every day.
I saw some improvement on Doxy back then, but I was on it for 7 months and I think I got all the benefits I could from that drug. Honestly, we were only trying the IV Doxy because I have been scared to try IV Rifampin - it's a strong antibiotic that is usually only used for treating tuberculosis. It can be hard on the liver and it is the color of orange Gatorade when it goes into your vein which is just kind of creepy. We were going to try IV Doxy and oral Rifampin to see how I handled it instead. We know Gentamicin is responsible for 90% of my improvement but my kidneys can't tolerate it. It is one of the 4 IV drugs recommended for Bartonella, I'm allergic to one of the other drugs, one is only available in injectable form and I need something stronger than that, then there's Rifampin. The improvement I saw from the Gentamicin let me know what I already suspected - Bartonella is my main problem. So, now me and M are back to the drawing board once again. We are praying about how to proceed. We are praying to lift my fears about our next move. We are just asking for guidance as we make our next big decision. We discussed IV Rifampin with the doctor last time and he is okay with prescribing it to me, but he didn't want me to feel scared about starting it.
The main problem is that I am sliding back down to where I was before. It's hard to explain but it takes long courses of antibiotic therapy - sometimes 3 years - for some Lyme patients to "get their lives back". When we go off of antibiotics our symptoms will return until we reach a point in our treatment where we've killed enough of the bacteria and bugs to feel somewhat normal without the antibiotics. I was hoping I would be further along by now, but I clearly still need some form of antibiotic therapy. Good news is that I haven't had a seizure yet - which is a miracle since I've been off antibiotics for close to 3 weeks now. The bad news is that my sound and light sensitivity are back, I'm unable to handle anything very well - I get upset easily, can't think clearly, etc. I was on 40 mgs of Valium a day while in Kansas City to help with my seizures. On the Gentimicin I got to where I didn't need ANY Valium which was GREAT! However, I've had to start taking it again. Yesterday I took 30 mgs which is the most I've taken in 4 months.
Sliding backwards is hard on me and watching it happen is really hard on M since he so wants to snap his fingers and make everything better for me. It's easy to start to feel sorry for myself or for us both to feel as if the rug is being pulled out from under us. It's easy to question and cry and to be mad. But none of those feelings is going to help us - we know from experience that they will only make things worse. So, we're asking you all to pray that God will lead us in the right direction in terms of my treatment. We are open to stopping IVs and trying to just do oral antibiotics, but we don't want to pull the PICC line until we know whether my body can absorb the oral medications well. We just want to go in the direction that God leads us with no fear, feeling strong and absolute about our next steps. We need to make a decision soon though before I get much worse. We will be talking to the doctor on Monday and hope to have a game plan by then.
I appreciate all of your thoughts and prayers and will update as soon as I can about where we go from here. A couple of quotes from the book, "100 Days in the Secret Place" seem quite fitting for my current sitution. They help describes why it's so hard to give up trying to control your own life and how we must stop making our own plans instead of following where God wants us to go:
"Pray for strength and faith enough to trust yourself completely to God. Follow Him simply wherever He may lead you and you will not have to think up big plans to bring about your perfection. Your new life will begin to grow naturally."
"God is your true friend and will always give you the counsel and comfort you need. Do not resist Him! Learn to listen to Him in silence so that you won't miss a word of what He says to you. You know a lot about outward silence, but little about inner silence. You must practice quieting your restless imagination. Stop listening to your unrenewed mind and the kind of logic it has! Get used to coming to God and asking Him for help when He asks you for something you are afraid to give."
-Archbishop Francois de Fenelon written in the late 1600s
Much love to you all-
K
We need many prayers right now. I started the Doxycycline and after 3 treatments I had to stop it. Something I never knew before going through treatment is that IV antibiotics can have really weird side effects - physical and mental - or maybe these type of side effects are just for people on long term therapy, or perhaps they just do these things to Lyme patients, I have no idea. What I do know is that the Doxy started making me horribly depressed. I would have accounted it to just having had surgery, or pain medication, etc. but the mental feeling I got was exactly how I felt when I was on Doxy in Kansas City. Back then I thought it was the stress of treatment or from being away from home that kept me depressed. Now I can say with certainty that a majority of that depression came from the Doxy. I was on my third treatment when I started crying for no reason, had bad mood swings and felt so angry all of the sudden. I cried and said, "I'm stopping this bag!" - basically turning the line off so that the Doxy wasn't going into my veins anymore. It only took about 15 minutes for me to start to feel more like myself mentally. I may have been able to handle those emotions more when I was in treatment with other patients who became close friends, but now that I spend most of my time alone I don't think it would be healthy to try and put myself in that mental state every day.
I saw some improvement on Doxy back then, but I was on it for 7 months and I think I got all the benefits I could from that drug. Honestly, we were only trying the IV Doxy because I have been scared to try IV Rifampin - it's a strong antibiotic that is usually only used for treating tuberculosis. It can be hard on the liver and it is the color of orange Gatorade when it goes into your vein which is just kind of creepy. We were going to try IV Doxy and oral Rifampin to see how I handled it instead. We know Gentamicin is responsible for 90% of my improvement but my kidneys can't tolerate it. It is one of the 4 IV drugs recommended for Bartonella, I'm allergic to one of the other drugs, one is only available in injectable form and I need something stronger than that, then there's Rifampin. The improvement I saw from the Gentamicin let me know what I already suspected - Bartonella is my main problem. So, now me and M are back to the drawing board once again. We are praying about how to proceed. We are praying to lift my fears about our next move. We are just asking for guidance as we make our next big decision. We discussed IV Rifampin with the doctor last time and he is okay with prescribing it to me, but he didn't want me to feel scared about starting it.
The main problem is that I am sliding back down to where I was before. It's hard to explain but it takes long courses of antibiotic therapy - sometimes 3 years - for some Lyme patients to "get their lives back". When we go off of antibiotics our symptoms will return until we reach a point in our treatment where we've killed enough of the bacteria and bugs to feel somewhat normal without the antibiotics. I was hoping I would be further along by now, but I clearly still need some form of antibiotic therapy. Good news is that I haven't had a seizure yet - which is a miracle since I've been off antibiotics for close to 3 weeks now. The bad news is that my sound and light sensitivity are back, I'm unable to handle anything very well - I get upset easily, can't think clearly, etc. I was on 40 mgs of Valium a day while in Kansas City to help with my seizures. On the Gentimicin I got to where I didn't need ANY Valium which was GREAT! However, I've had to start taking it again. Yesterday I took 30 mgs which is the most I've taken in 4 months.
Sliding backwards is hard on me and watching it happen is really hard on M since he so wants to snap his fingers and make everything better for me. It's easy to start to feel sorry for myself or for us both to feel as if the rug is being pulled out from under us. It's easy to question and cry and to be mad. But none of those feelings is going to help us - we know from experience that they will only make things worse. So, we're asking you all to pray that God will lead us in the right direction in terms of my treatment. We are open to stopping IVs and trying to just do oral antibiotics, but we don't want to pull the PICC line until we know whether my body can absorb the oral medications well. We just want to go in the direction that God leads us with no fear, feeling strong and absolute about our next steps. We need to make a decision soon though before I get much worse. We will be talking to the doctor on Monday and hope to have a game plan by then.
I appreciate all of your thoughts and prayers and will update as soon as I can about where we go from here. A couple of quotes from the book, "100 Days in the Secret Place" seem quite fitting for my current sitution. They help describes why it's so hard to give up trying to control your own life and how we must stop making our own plans instead of following where God wants us to go:
"Pray for strength and faith enough to trust yourself completely to God. Follow Him simply wherever He may lead you and you will not have to think up big plans to bring about your perfection. Your new life will begin to grow naturally."
"God is your true friend and will always give you the counsel and comfort you need. Do not resist Him! Learn to listen to Him in silence so that you won't miss a word of what He says to you. You know a lot about outward silence, but little about inner silence. You must practice quieting your restless imagination. Stop listening to your unrenewed mind and the kind of logic it has! Get used to coming to God and asking Him for help when He asks you for something you are afraid to give."
-Archbishop Francois de Fenelon written in the late 1600s
Much love to you all-
K
Sunday, November 7, 2010
Post surgery update
Surgery went well. However the ultrasound didn't show the adhesions from my gallbladder to my kidney. It also hadn't shown how swollen it was. But, good news is that it is out! The surgeon said I may still experience some symptoms for the first week or so after surgery. For instance, not being able to eat normal portion sizes of food without pain. I do know that the horrendous heartburn is already gone and my back feels better. My incisions did bleed for a bit after surgery and my white shirt is now stained with blood. I think it makes me look tough - haha. I also had a wonderful surgeon and great nurses who let me keep my sunglasses and headphones on until the anesthesia kicked in and they were back on when I woke up in recovery. I'm very thankful for that because the bright lights and noises in recovery could have easily caused a seizure! So, again, the Lord always goes before me and this time was no exception!
The bad part of the whole ordeal was the pain medication. After having passed over 100 kidney stones and having had 20 surgeries, well, I've developed a high tolerance for pain medications. The nurse in recovery couldn't believe how much I was still hurting after two doses of morphine. There are many instances where someone could fake pain just to get pain medication, but you just can't fake pain when you're coming out of anesthesia so they know it's not that you WANT morphine, it's that you need it. They ended up having to give me a 3rd dose and then later switched to a dose of toradol (another strong pain killer). M talked to the surgeon about my problems with pain medications and told her we still had some Fentanyl pain patches from a kidney stone 7 months ago. She wouldn't be able to prescribe such a strong drug to me for a minor surgery but she went over with M what medications I could take while on Fentanyl and what to avoid. I tried to just take the Lortab pain pills she prescribed because I honestly HATE pain medication, but I got no relief at all with the pills. After 36 hours of watching me wincing in pain and crying out each time I moved, M finally told me he was going to put a pain patch on my back. I was hurting too much to argue about how I could "tough it out" so the patch was put to work. It works wonders and my incisions are now just sore and I can walk to the bathroom without bending over double!
Oh, my kidney function tests showed improvement this week. We actually didn't know if I would be able to have the surgery on Thursday since they wouldn't operate if my kidney function stayed the same or worsened. So, again - THANK YOU LORD - because I was desperate to have that gallbladder removed. My kidney function even improved enough for me to start on IV Doxycycline this week - YAY!
I just wanted to thank you all for your kind thoughts and sweet prayers! I know that God has gotten me through all of this and I continue to lean on Him to get over the next hurdle. I pray that you all feel His love and protection as you go through your own hurdles in your life. I feel very groggy from medication right now, but I feel more blessed than anything else. I can see that God is still leading me down a path and He has wonderful plans for me! I just have to be patient and keep leaning on Him to get there!
I know I've posted these verses before - but I don't think one can ever hear them enough:
"I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord." Psalm 40:1-3 (NIV)
Much love-
K
The bad part of the whole ordeal was the pain medication. After having passed over 100 kidney stones and having had 20 surgeries, well, I've developed a high tolerance for pain medications. The nurse in recovery couldn't believe how much I was still hurting after two doses of morphine. There are many instances where someone could fake pain just to get pain medication, but you just can't fake pain when you're coming out of anesthesia so they know it's not that you WANT morphine, it's that you need it. They ended up having to give me a 3rd dose and then later switched to a dose of toradol (another strong pain killer). M talked to the surgeon about my problems with pain medications and told her we still had some Fentanyl pain patches from a kidney stone 7 months ago. She wouldn't be able to prescribe such a strong drug to me for a minor surgery but she went over with M what medications I could take while on Fentanyl and what to avoid. I tried to just take the Lortab pain pills she prescribed because I honestly HATE pain medication, but I got no relief at all with the pills. After 36 hours of watching me wincing in pain and crying out each time I moved, M finally told me he was going to put a pain patch on my back. I was hurting too much to argue about how I could "tough it out" so the patch was put to work. It works wonders and my incisions are now just sore and I can walk to the bathroom without bending over double!
Oh, my kidney function tests showed improvement this week. We actually didn't know if I would be able to have the surgery on Thursday since they wouldn't operate if my kidney function stayed the same or worsened. So, again - THANK YOU LORD - because I was desperate to have that gallbladder removed. My kidney function even improved enough for me to start on IV Doxycycline this week - YAY!
I just wanted to thank you all for your kind thoughts and sweet prayers! I know that God has gotten me through all of this and I continue to lean on Him to get over the next hurdle. I pray that you all feel His love and protection as you go through your own hurdles in your life. I feel very groggy from medication right now, but I feel more blessed than anything else. I can see that God is still leading me down a path and He has wonderful plans for me! I just have to be patient and keep leaning on Him to get there!
I know I've posted these verses before - but I don't think one can ever hear them enough:
"I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord." Psalm 40:1-3 (NIV)
Much love-
K
Wednesday, November 3, 2010
Out with the bad...
My surgery to have my gallbladder removed is scheduled for 10:30 tomorrow morning. This will be my third laproscopic surgery so the good thing is that I'm not nervous about it. The bad thing is that my blood test from last week came back and my kidney function was actually worse even though I had been off the antibiotic for 2 days before my blood was drawn. Until my kidney function gets back to normal, I can't take ANY antibiotics. And, the longer I'm off the antibiotics, more of my symptoms come back. Going to consult with the surgeon on Monday was very difficult. My noise sensitivity was bad and I had to go back to wearing my earplugs and even my headphones. After thinking about all the progress I've made I was able to notice more of the psychological symptoms that Lyme and Bartonella cause. I knew my mood swings had gone away - no getting angry for no reason and then crying because I couldn't figure out why I was angry. I recognized that I was able to think more clearly and was not as confused as I had been. I also noticed that I've been less anxious as well.
Those are things you might not notice until they start to come back. I am having more difficulty thinking, although I believe that could also be due to the fact that I've had to be off of my blood thinner in order to have the endoscopy and the gallbladder surgery. No blood thinner means less blood flow to the brain which equals more difficulty processing even the most simple of thoughts. I have a hard time completing sentences without stopping in the middle to think of the next word. In fact, writing this entry has taken forever because I keep having to stop and think so hard about how to explain things. There is good news though. First, I don't feel those mood swings coming back. I thank the good Lord for that because they make you feel absolutely insane! Also, I'll be back on my blood thinner medication within a day or so of the surgery and after a few days of it I believe my ability to think clearly will come back.
However, the anxiety has started to creep back in. It's anxiety over the smallest things - like going to an unfamiliar place, having to meet someone I don't know, or not be able to expect what's coming next in my day. I know noises can trigger my seizures and I felt that again as I was in the hospital and surgeon's office the other day. After spending months without the unexplainable anxiety, I now believe that the more anxious I feel the worse my sensitivity to sound becomes. The anxiety also seems to put my brain in a state where seizures are more likely. I've been noise sensitive for a long time - long before starting treatment in Kansas City. And while it definitely became much worse, I think the way noises startle me might cause my seizures more than the noises themselves. It's always been easy to startle me because my "fight or flight" response, which comes when you get scared, doesn't work very well. The horomone that is released by the adrenal glands to respond to situations where you get scared or startled is cortisol. My cortisol levels were sky high when I first got to Kansas City. So much so that the doctor said it was as if I were being chased by a tiger all day. I stayed in a state of nervousness and anxiety well beyond what would be considered normal. My cortisol levels are lower now, but my adrenal glands still don't work as well as they should. I think on the Gentamicin my anxiety lessened as did most of my other symptoms and my adrenal glands started to function better. My anxiety is not nearly as bad as it was before the Gentamicin. I believe God allowed me to have a break from so many of my symptoms in order for me to understand them better. Once you better understand the reason behind the symptoms, you can understand how to treat them more effectively.
I've probably rambled on more in this entry than in others because well, I just can't think very well right now. I do trust in the fact that God has wonderful things planned for my life and that He will get me through all of this. I am looking forward to seeing how much better I feel after my gallbladder is removed. The surgeon said I might see a big difference in many of my symptoms, but that I should definitely have less back pain and stomach problems. I'll just be happy to eat again without getting sick and being able to get rid of this horrible chest pain. But, I must admit, I'm excited to think about what other symptoms may be related to my gallbladder that I haven't even thought about. God is good and He's proven that to me time and time again. I look forward to having this surgery behind me and for my kidneys to function properly again so we can get back on a treatment regimen and keep pushing forward.
I appreciate all of your prayers and would of course appreciate some as I go through my surgery and recovery. I'll write an update as soon as I can. Thank you all so much for keeping me in your thoughts and prayers!
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14 (NIV)
"O Lord, you are my God; I will exault you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago." Isaiah 25:1 (NIV)
Much love to you all!
K
Those are things you might not notice until they start to come back. I am having more difficulty thinking, although I believe that could also be due to the fact that I've had to be off of my blood thinner in order to have the endoscopy and the gallbladder surgery. No blood thinner means less blood flow to the brain which equals more difficulty processing even the most simple of thoughts. I have a hard time completing sentences without stopping in the middle to think of the next word. In fact, writing this entry has taken forever because I keep having to stop and think so hard about how to explain things. There is good news though. First, I don't feel those mood swings coming back. I thank the good Lord for that because they make you feel absolutely insane! Also, I'll be back on my blood thinner medication within a day or so of the surgery and after a few days of it I believe my ability to think clearly will come back.
However, the anxiety has started to creep back in. It's anxiety over the smallest things - like going to an unfamiliar place, having to meet someone I don't know, or not be able to expect what's coming next in my day. I know noises can trigger my seizures and I felt that again as I was in the hospital and surgeon's office the other day. After spending months without the unexplainable anxiety, I now believe that the more anxious I feel the worse my sensitivity to sound becomes. The anxiety also seems to put my brain in a state where seizures are more likely. I've been noise sensitive for a long time - long before starting treatment in Kansas City. And while it definitely became much worse, I think the way noises startle me might cause my seizures more than the noises themselves. It's always been easy to startle me because my "fight or flight" response, which comes when you get scared, doesn't work very well. The horomone that is released by the adrenal glands to respond to situations where you get scared or startled is cortisol. My cortisol levels were sky high when I first got to Kansas City. So much so that the doctor said it was as if I were being chased by a tiger all day. I stayed in a state of nervousness and anxiety well beyond what would be considered normal. My cortisol levels are lower now, but my adrenal glands still don't work as well as they should. I think on the Gentamicin my anxiety lessened as did most of my other symptoms and my adrenal glands started to function better. My anxiety is not nearly as bad as it was before the Gentamicin. I believe God allowed me to have a break from so many of my symptoms in order for me to understand them better. Once you better understand the reason behind the symptoms, you can understand how to treat them more effectively.
I've probably rambled on more in this entry than in others because well, I just can't think very well right now. I do trust in the fact that God has wonderful things planned for my life and that He will get me through all of this. I am looking forward to seeing how much better I feel after my gallbladder is removed. The surgeon said I might see a big difference in many of my symptoms, but that I should definitely have less back pain and stomach problems. I'll just be happy to eat again without getting sick and being able to get rid of this horrible chest pain. But, I must admit, I'm excited to think about what other symptoms may be related to my gallbladder that I haven't even thought about. God is good and He's proven that to me time and time again. I look forward to having this surgery behind me and for my kidneys to function properly again so we can get back on a treatment regimen and keep pushing forward.
I appreciate all of your prayers and would of course appreciate some as I go through my surgery and recovery. I'll write an update as soon as I can. Thank you all so much for keeping me in your thoughts and prayers!
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14 (NIV)
"O Lord, you are my God; I will exault you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago." Isaiah 25:1 (NIV)
Much love to you all!
K
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