I’ve been angry at God. I’ve had 3 seizures in 3 days and they last a long time and they hurt my body and they make me angry. I hurt and I am so tired and I honestly get angry about that. I wonder when it’s going to stop and I get angry. But I can only stay angry for so long before God starts to work on me. He starts to work in my heart and show me things. This morning He showed me how to stop being angry – at least for now. He started to show me how to hand things over to Him AGAIN – it’s a lesson He has to teach me repeatedly. He showed me a few things and then He told me to type. That’s when He really starts to show me things – when I write. So I just started typing and I ended up with what’s written below:
I’m never going to be in control of my life. Even those people I envy, the ones that have lives that look perfect…they aren’t in control of their lives either. They just haven’t had to be hit on the head with something that makes them face that fact. They haven’t gone where I’ve gone – that place where you give up every concept you had about being in control of your life. I had to realize that I’m not even in control of the next few minutes. As soon as I start to think I am – a seizure could hit. The kind that knock me around and show me I’m not in control of my own body or even my muscles. I’m a puppet when those happen. I just have to decide that in my life I want to be God’s puppet and not a puppet pulled by the wants and desires of the outside world. I see people’s vacation pictures and I wish I could plan a vacation, or just be on a vacation. But my life is where God wants it to be for now. I’ve had a lot of good vacations in the past, but now is not my vacation time. Right now is a time of intense pain and suffering that God has been and will be using to refine me into that person He wants me to become. I don’t know why some people get an “easy life” as compared to others. I don’t know why God allows some people to be refined by walking through fire after fire while some people live easily and simply. Maybe I needed this kind of definite breaking to ever learn how I need to react to how God will work in my life. I don’t surrender easily and I continue to have a hard time even surrendering to God. I know it’s the best way to go through life but I have such a strong desire to control my life, my environment, my world that I have to talk to God daily, to have deep talks with Him just in order to hand over that day to Him. I need breaking. I want to stop being broken though. I’m tired of breaking. I’m tired of going through the process of being broken repeatedly. The sad fact is that I’ve had to be broken repeatedly to even understand one tenth of what God is trying to teach me daily. So I don’t get that “easy life” but if that is God’s plan I should allow myself to find a way to accept it and be okay with it.
I’m never going to understand HOW God works or WHY He does things or allows certain things to happen. That’s not my job. I’m not the one who has to understand the how’s and why’s of all of that. It’s up to God who is much more qualified than me to make those decisions. I may marvel at what transpires in other people’s lives because it seems they never had to fight and claw for what they have. But at the same time I may also marvel at how real God has made Himself to me. How He is surrounding me with His presence even when I doubt His plans for me, even when in all honesty, I don’t deserve to feel His presence. I feel anger welling up inside me when I compare my current situation to those of my friends. I feel anger at Him for putting me in this place, for allowing me to endure such pain, both physical and mental. But you can only stay mad for so long before He makes you pull yourself up. If you try to ignore Him it doesn’t work. At least it doesn’t work for me. I am allowed a few weeks at a time to be upset and angry and then I feel Him pulling at me. He’s tugging at me to step back and see that I’m not the only one in the world who’s hurting and in pain. I’m one of so many people who haven’t been dealt the “easy life”. I have to step back to let that anger go and it feels like a weight lifting off of me when I let it go. Sometimes I get to feel that way for days – to feel light while I go through the pain and heartache of my current path. I love those days when even the seizures can’t knock me down mentally or spiritually. However, I also know I cannot beat myself up when I do get knocked down. It’s part of the process. It’s the fact that I get back up and cling to God when I rise again that matters. It’s knowing that sometimes the devil uses so many small things to burrow inside our brains and change our outlook on our lives. I’m tired of the devil worming his way into my brain. I have to tell God that and push all those bad thoughts and feelings away from me.
I am not perfect nor will I ever be perfect. That’s okay because neither will anyone else. If I sit back and try to compare my life with those who seemingly got dealt “easy lives” I have to realize that they aren’t perfect either. I also have to realize that I don’t really know what goes on in their lives. I don’t know what burrows into their brains and makes them sad or angry at times. God keeps telling me to “let it go”. I have to let go of the envy I have of those people who seem outwardly perfect because they aren’t. Even if I know for sure that their current situation is better than mine, it doesn’t mean their lives are any more important than mine. It doesn’t mean that they don’t fight their own battles with control issues and giving things over to God. Just because I’m going through such a rough time right now that doesn’t give me the right to feel like I corner the market on hardships. We all have our own versions of rough times. No one goes through this life untouched by pain or heartache and God doesn’t place more importance on one person’s pain than He does someone else’s. He feels all our pain and He tries to see us through those times if we allow Him in to do so.
So, I’ve been mad about my situation. I’ve told God I was mad at Him for allowing my situation to continue on this seemingly endless path of pain and physical hardships with no real end in sight. He let me be mad for awhile and then He came and made it clear that I only get to feel sorry for myself for so long before I have to step back and hand all of that over to Him. He doesn’t want just part of it – He wants ALL of it. I have to hand over the envy, the pain, the heartache, the disappointment, the control issues, the anger, and the frustration of it all. I have to give all of those to Him because if I don’t, they will eat me alive. I’m so thankful that He tells me these things. I’m so thankful that He makes His presence so palpable, so amazingly real, in my life. I’m so thankful that He blessed me with a wonderful husband who prays daily for us to be able to accept whatever God’s will is for our lives. I’m so thankful that God gave me a husband who does nothing but support me through all of this. I’m so thankful that God allowed me to have a family that goes through all of this with me and prays for me all the time. This is what Paul meant about prayer. To pray with THANKSGIVING and I’m thanking God for all the wonderful things He has already done in my life instead of allowing myself to wallow in how bad my current situation is. God goes before me in all things and I know this because He has shown me how very true that statement is so many times in my own life. So I may not know where my life is headed. I may not know what other physical trials I must endure. I may not know how to handle what comes next or how to accept my total lack of control of everything. But I know that God goes before me. If I can just focus on that then perhaps I could stop comparing my life to other people’s lives. He goes before me so no matter how bad things get, He is ahead of me clearing out the path of my life.
So, that's what I typed while I listened to God. That's what I think He wanted me to see today. I wish I saw things this clearly everyday but I can't. That's not how it works. I have to just hand it over and see what happens next. We're making some changes in my treatment because my symptoms have gotten a lot worse since I stopped treatment and we feel that changes must be made. Pray that we make the right decisions and that God leads us clearly to the best decision for my health right now.
It's only fitting that I end with the verses that hit me so hard as I typed this:
"Rejoice in the Lords always, I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgivng, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:4-7
Thank you to all the people who still read this and who have traveled this road with me for over a year. I've found that many people are with you in the beginning, but as time passes people want to hear good news! They want to see God working fast! They get tired of hearing about set backs and hurdles. So, I am grateful to everyone who has prayed me through those set backs and hurdles and who, like me, wants to see God's healing power fast, but understands that God works in His own time and not ours. I am truly blessed to have so many good people praying for me and I know how important all your prayers are. They are precious to me.
Much love-
K
Friday, July 16, 2010
Saturday, July 10, 2010
Trying to adapt and feeling numb...
I went to the speech therapist and they did a barium swallow test. I had to eat applesauce, a chip, small fruit pieces and drink water while we watched it live on a monitor. All of these were coated in barium and they cleared my throat. They said I should go to an ENT and possibly a gastroenterologist next. Those specialists would be able to see if the problem is further down my esophagus into my chest. Their theory is that those are the muscles causing the problem. It seems they spasm too much for no reason and then they don’t spasm properly to push my food and pills down. My theory is that the swallowing issue is a herx reaction and will go away now that I’m off the anti-yeast probiotic supplement. Also, detoxing from the IV antibiotics is extremely hard on your body and that could have added to the problem. The good news is that I think it’s getting better day by day. I’m still eating jello or ice cream to make sure and push the pills down but at least I’m getting them down!
I also started a stimulant medication that is supposed to help my brain fire the right messages or at least get it to recognize signals better. The down side is that the medication can increase the chance of seizures before my body gets accustomed to the drug. I had a seizure the first day I took it and that upset me because it was a “bigger” seizure than I have had in the past month and it lasted for awhile. I cannot say that it was solely due to the drug though. I had been at the hospital the day before to see the speech therapist and had to be wheeled all over the hospital in order to get to radiology for the barium test. Side note – picture me in a hospital wheelchair with an oxygen tank attached wearing sunglasses and a hat to deal with the fluorescent lighting and then headphones over my hat to keep the noise out. I choose to think people stared because I looked good instead of just weird – haha. Also, underneath the headphones I had in my ear plugs which are the kind used at shooting ranges. They are the best around and yet even with all of that everything was still so loud. That should better explain just how sensitive my hearing is right now. I could still hear everyone talking around me, doors shutting, and even the beeps in the elevators! Because my severe sound sensitivity can cause me to have a seizure, I have only been out of the house 4 times since I’ve been home – that’s almost 3 months now. So I’ve not been around many things that stimulate your central nervous system. Then the next day my nurse came to the house for my weekly blood draw and PICC line dressing change. We also had a UPS guy who was apparently illiterate since he rang our doorbell even though there’s a big sign on the door saying to NOT ring the doorbell. Unexpected loud noises trigger my “startle reflex”. If I’m standing I will fall straight to the ground and I can also go straight into a seizure ergo the need for the sign. It was that afternoon that I had the seizure so I think it was just 2 days of being over stimulated as well as the new medication that caused it.
As you can imagine I hate the fact that I am basically trapped in my house. I want to go out so badly but we haven’t tried it because of the high risk of having a seizure. The seizure itself might not be so bad but I could really hurt myself when I fall to the ground when one hits. So, I think God did show me something during my trip to the hospital. It was the first time I’ve tried to maneuver a wheelchair on my own and cover a lot of ground. Usually my husband or my mom just pushes me but I’m really tired of being so dependent on other people so I wheeled myself around. There were several unexpected loud noises while I was there but when my body went limp it didn’t matter because I was in a wheelchair with arm rests and leg supports. It made it safe for me to deal with my sudden loss of muscle control. My mom was with me and we started thinking about how a wheelchair might be the answer to getting me out of the house safely. I immediately started searching for wheelchairs online but all of the ones with leg supports are over 40 pounds. I’m not sure if mom could get that out of the car trunk even if I was able to help her lift it. So, now I’m trying to ask around to see if anyone can tell me where I can find a lighter weight wheelchair with leg supports.
M works from home which is such a blessing but his office is downstairs so most days I end up in the bed alone. All of this alone time means I often think or dwell on situations too much. I couldn’t help but recognize how bad things have to be when you get excited over the possibility of getting a wheelchair. Also, I think about the fact that if and when I do get out, I won’t be able to “fix up” like I used to do. It won’t be that I’m merely going out without my makeup with hair that’s too long and needs washing. No, I’ll be sporting my anti-seizure look with the sunglasses and headphones like I was at the hospital. I’ve lived in the same city my entire life, except when I was away at college, which means that I rarely go anywhere without seeing someone I know. I picture running into someone who doesn’t know my situation and seeing them either look uncomfortable about what to say or worse to have them look at me with pity in their eyes. I’m not sure I could handle that. Maybe that’s my vanity talking but it’s been hard on me to realize that I may have to endure that in order to escape my bedroom and get out into the world. However, I’m beginning to see it as a small price to pay in order to have some sort of life outside of my house.
I know I’ve written a lot but I’ve always said people don’t have to read this if they don’t want to – ha! So, I want to be brutally honest about how I’m feeling right now. I’m depressed and I recognize that’s a completely normal emotion for my current situation, not to mention the impact of all the “downer” medication I have to take for my seizures. But when people tell me how strong I am or how they are amazed by my faith, I sometimes feel like a fraud. I go through times where I don’t feel strong at all and I am holding on to my faith not by a rope, but by a single thread. There are times when I question God about why I have to go through this. I tell Him that I’m crying out to Him and yet sometimes feel as though He must not hear me. I want Him to heal me faster if it’s His plan to heal me at all. I get mad about what I’m going through and I know that doesn’t mean I don’t have faith. I know God’s with me through all of this but I’m human and I’d rather He fix my problems instead of Him having to carry me through them. As always I try to think about all the people who have it much worse than I do but sometimes it’s hard to see beyond your own pain. I feel guilty about the fact that I haven’t even been able to make myself read my Bible or watch any online sermons. What might be worse is that I’m noticing that my anger about my situation is fading and I think I’m somewhat numb right now. I do credit myself with the fact that I’m getting better at just adapting to changes in my life now. I try to simply adapt to any new or worsening symptoms. I’m adapting to being in the bed all the time and not seeing people. I’m adapting to the fact that I have no idea when I’ll be able to handle the noise of the outside world without plugging my ears up. I’m adapting to never knowing when I’ll be able to drive my car. I just try to keep adapting to whatever happens next. If I can’t make myself adapt and accept these things the only other option is crying all the time. I’ve done that before and it solves nothing. Sometimes it can even trigger a seizure. I can’t have pity parties anymore so I’m numb. I read something written by a person who was going through a horrible situation health wise and it wasn’t just her life that was at stake because she was pregnant and her baby’s life was at stake as well. I can’t imagine being in that situation but reading what she wrote after spending most of her pregnancy being hospitalized helped me. She wrote about becoming numb to what was happening and she looked at that lack of emotion as a gift from God. I cried when I read about how she thought God was allowing her to be numb because otherwise she would be going crazy. Her thought was just because she couldn’t bring herself to pray that didn’t mean God couldn’t hear her soul crying out. I think she’s right. God knows what I’m going through and He knows everything I’m feeling. He’s still here with me and He knows how very human and imperfect I am. In writing this I just became aware of something. I think He’s beginning to show me what being saved by grace really means. He looks down on us with an unconditional love that we cannot comprehend. Even though I’m not feeling spiritually strong right now, He still loves me. His love and strength are the very things that have gotten me this far in my very difficult journey. The Bible says that God is love and that it is by accepting Jesus Christ that we are saved. None of us could ever do enough good works or be perfect enough to earn salvation. It is by the grace of God and His love for us that we are saved. So right now I may be feeling numb but that doesn’t mean God is not at work in my life, nor does it mean that He has forgotten me. His presence in my heart is the only thing that is pushing me through each day right now. I know the numbness I feel is not permanent. I believe God is showing me that just as my current mental state is not permanent; my current physical state is not permanent either. I just have to hand every bit of this over to God every day and realize that my soul is constantly praying to Him, seeking Him, and trusting in Him. Even when I’m numb, I can still count on Him.
“ ‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’ ” Jeremiah 29:11
Much love to you all –
K
I also started a stimulant medication that is supposed to help my brain fire the right messages or at least get it to recognize signals better. The down side is that the medication can increase the chance of seizures before my body gets accustomed to the drug. I had a seizure the first day I took it and that upset me because it was a “bigger” seizure than I have had in the past month and it lasted for awhile. I cannot say that it was solely due to the drug though. I had been at the hospital the day before to see the speech therapist and had to be wheeled all over the hospital in order to get to radiology for the barium test. Side note – picture me in a hospital wheelchair with an oxygen tank attached wearing sunglasses and a hat to deal with the fluorescent lighting and then headphones over my hat to keep the noise out. I choose to think people stared because I looked good instead of just weird – haha. Also, underneath the headphones I had in my ear plugs which are the kind used at shooting ranges. They are the best around and yet even with all of that everything was still so loud. That should better explain just how sensitive my hearing is right now. I could still hear everyone talking around me, doors shutting, and even the beeps in the elevators! Because my severe sound sensitivity can cause me to have a seizure, I have only been out of the house 4 times since I’ve been home – that’s almost 3 months now. So I’ve not been around many things that stimulate your central nervous system. Then the next day my nurse came to the house for my weekly blood draw and PICC line dressing change. We also had a UPS guy who was apparently illiterate since he rang our doorbell even though there’s a big sign on the door saying to NOT ring the doorbell. Unexpected loud noises trigger my “startle reflex”. If I’m standing I will fall straight to the ground and I can also go straight into a seizure ergo the need for the sign. It was that afternoon that I had the seizure so I think it was just 2 days of being over stimulated as well as the new medication that caused it.
As you can imagine I hate the fact that I am basically trapped in my house. I want to go out so badly but we haven’t tried it because of the high risk of having a seizure. The seizure itself might not be so bad but I could really hurt myself when I fall to the ground when one hits. So, I think God did show me something during my trip to the hospital. It was the first time I’ve tried to maneuver a wheelchair on my own and cover a lot of ground. Usually my husband or my mom just pushes me but I’m really tired of being so dependent on other people so I wheeled myself around. There were several unexpected loud noises while I was there but when my body went limp it didn’t matter because I was in a wheelchair with arm rests and leg supports. It made it safe for me to deal with my sudden loss of muscle control. My mom was with me and we started thinking about how a wheelchair might be the answer to getting me out of the house safely. I immediately started searching for wheelchairs online but all of the ones with leg supports are over 40 pounds. I’m not sure if mom could get that out of the car trunk even if I was able to help her lift it. So, now I’m trying to ask around to see if anyone can tell me where I can find a lighter weight wheelchair with leg supports.
M works from home which is such a blessing but his office is downstairs so most days I end up in the bed alone. All of this alone time means I often think or dwell on situations too much. I couldn’t help but recognize how bad things have to be when you get excited over the possibility of getting a wheelchair. Also, I think about the fact that if and when I do get out, I won’t be able to “fix up” like I used to do. It won’t be that I’m merely going out without my makeup with hair that’s too long and needs washing. No, I’ll be sporting my anti-seizure look with the sunglasses and headphones like I was at the hospital. I’ve lived in the same city my entire life, except when I was away at college, which means that I rarely go anywhere without seeing someone I know. I picture running into someone who doesn’t know my situation and seeing them either look uncomfortable about what to say or worse to have them look at me with pity in their eyes. I’m not sure I could handle that. Maybe that’s my vanity talking but it’s been hard on me to realize that I may have to endure that in order to escape my bedroom and get out into the world. However, I’m beginning to see it as a small price to pay in order to have some sort of life outside of my house.
I know I’ve written a lot but I’ve always said people don’t have to read this if they don’t want to – ha! So, I want to be brutally honest about how I’m feeling right now. I’m depressed and I recognize that’s a completely normal emotion for my current situation, not to mention the impact of all the “downer” medication I have to take for my seizures. But when people tell me how strong I am or how they are amazed by my faith, I sometimes feel like a fraud. I go through times where I don’t feel strong at all and I am holding on to my faith not by a rope, but by a single thread. There are times when I question God about why I have to go through this. I tell Him that I’m crying out to Him and yet sometimes feel as though He must not hear me. I want Him to heal me faster if it’s His plan to heal me at all. I get mad about what I’m going through and I know that doesn’t mean I don’t have faith. I know God’s with me through all of this but I’m human and I’d rather He fix my problems instead of Him having to carry me through them. As always I try to think about all the people who have it much worse than I do but sometimes it’s hard to see beyond your own pain. I feel guilty about the fact that I haven’t even been able to make myself read my Bible or watch any online sermons. What might be worse is that I’m noticing that my anger about my situation is fading and I think I’m somewhat numb right now. I do credit myself with the fact that I’m getting better at just adapting to changes in my life now. I try to simply adapt to any new or worsening symptoms. I’m adapting to being in the bed all the time and not seeing people. I’m adapting to the fact that I have no idea when I’ll be able to handle the noise of the outside world without plugging my ears up. I’m adapting to never knowing when I’ll be able to drive my car. I just try to keep adapting to whatever happens next. If I can’t make myself adapt and accept these things the only other option is crying all the time. I’ve done that before and it solves nothing. Sometimes it can even trigger a seizure. I can’t have pity parties anymore so I’m numb. I read something written by a person who was going through a horrible situation health wise and it wasn’t just her life that was at stake because she was pregnant and her baby’s life was at stake as well. I can’t imagine being in that situation but reading what she wrote after spending most of her pregnancy being hospitalized helped me. She wrote about becoming numb to what was happening and she looked at that lack of emotion as a gift from God. I cried when I read about how she thought God was allowing her to be numb because otherwise she would be going crazy. Her thought was just because she couldn’t bring herself to pray that didn’t mean God couldn’t hear her soul crying out. I think she’s right. God knows what I’m going through and He knows everything I’m feeling. He’s still here with me and He knows how very human and imperfect I am. In writing this I just became aware of something. I think He’s beginning to show me what being saved by grace really means. He looks down on us with an unconditional love that we cannot comprehend. Even though I’m not feeling spiritually strong right now, He still loves me. His love and strength are the very things that have gotten me this far in my very difficult journey. The Bible says that God is love and that it is by accepting Jesus Christ that we are saved. None of us could ever do enough good works or be perfect enough to earn salvation. It is by the grace of God and His love for us that we are saved. So right now I may be feeling numb but that doesn’t mean God is not at work in my life, nor does it mean that He has forgotten me. His presence in my heart is the only thing that is pushing me through each day right now. I know the numbness I feel is not permanent. I believe God is showing me that just as my current mental state is not permanent; my current physical state is not permanent either. I just have to hand every bit of this over to God every day and realize that my soul is constantly praying to Him, seeking Him, and trusting in Him. Even when I’m numb, I can still count on Him.
“ ‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’ ” Jeremiah 29:11
Much love to you all –
K
Friday, July 2, 2010
Holding on to hope...
I went back to the doctor on Monday (the 28th) after a very rough week. I had a seizure on Wednesday afternoon but it wasn’t the same as my other seizures. It wasn’t as long (thankfully) and at the end it was like my body just went limp and I had to sleep. My blood pressure went from being in the 150s/80s right back to its’ usual 80/60 and my pulse dropped from around 160 to 55 very fast. I immediately slept for hours but M kept a close eye on me of course.
Seizures aren’t the only set back though, I’m also having difficulty swallowing. I’ve always had some issues swallowing food and even had a test run 5 years ago where I had to swallow a barium tablet while being x-rayed so they could see if there was an obstruction causing the problem. Nothing was there but it showed where the tablet stayed in one part of my esophagus for 10 seconds or so and another area it hung out around 15 to 20 seconds. Doesn’t sound like a long time but it feels like forever. However, the powers at be at that time prescribed me an acid reflux drug and called it done. Just another reason why I don’t tend to trust doctors very much – they’ve missed or misdiagnosed so many of my illnesses in the past! My current swallowing issues are much more serious though. Serious enough that I haven’t been able to swallow pills and when I do they seem to dissolve in my esophagus and give me horrid heartburn. It got to where all I could swallow besides water was ice cream and jello. It actually feels like my throat is closed or that the sides are touching each other. It’s scary and somehow just another expected unusual issue that I seem to keep coming up against. The fear that the choking feeling creates is another problem. I had three “mini-seizures” Sunday afternoon because I felt I was choking. The choking upsets me, my emotions trigger brain activity that somehow ends with seizures. We’re trying to keep me drugged so that doesn’t happen but even so it’s been a rough week.
The doctor believes the swallowing issue could be one of two possibilities. First, it could be a herx reaction from the anti-yeast medication I’ve been on which would make sense because this flared up so quickly. The other reason has to do with my autonomic nervous system malfunctioning and it is haywire right now. To put it very simply, the autonomic nervous system controls all sorts of things from your heart rate, blood pressure, body temperature, etc. Mine has been out of control for years. The doctor thinks at the worst that my autonomic nervous system has been a little “fried” and for now my brain has forgotten how to swallow properly. We have an appointment set up with a speech therapist next week who will work on retraining my brain and esophageal muscles to swallow correctly again. We could have gone this week but we’re praying that this is simply a herx and that since I quit taking the anti-yeast medication on Saturday that we will see a marked improvement in the next few days. If not, I can get in to see the speech therapist this week. The only reason we don’t want to go is because it is almost impossible to get me out, to the hospital, in the 90-100 degree heat, with all the noise and not expect me to either have a seizure or just pass out. We ended my doctor’s appointment with me having crawled out of the wheelchair and onto the cold tile floor. I was clammy and felt faint from all the exertion. So, it isn’t that we don’t want to jump on getting this taken care of, it’s just that sometimes getting me out of the house can be more of a danger than trying to wait this out.
I have also stopped the IV antibiotics for 2 months. We are praying to see a big difference in how I feel since you normally feel worse when you are on treatment than when you are on. I will still be doing a bag of IV fluids every day as well as taking my blood thinner and Benadryl through my PICC line. This will make sure and keep the line open in case we have to go back to IVs after the break. We’re praying that if I do need more antibiotic therapy I will be able to handle orals now instead of having to keep my PICC line in. I can’t begin to tell you how I would love to be able to take a shower or bath without having to keep my arm wrapped and my line protected from the water! Pray that I see strength return to my body and my mind. Pray that I feel God leading me to an end of these IVs and toward a healthier life. Also, please continue to pray for all my treatment friends. I keep up with them and there are a few still at the clinic, some have gone to another clinic for different therapy options, some are home on oral antibiotics – but they ALL need your prayers. Prayers for hope and healing and prayers for God’s love to be with them as they continue down their own paths trying to find their way back to health!
Now, I have been in this bed and cried out to God about all of my troubles and especially this swallowing issue. He knows my pain, suffering, and sorrow. I know there are many other people out there in much worse situations than I. I try to focus on that when I sit here and think about how my “life” is really no life at all. The doctor says there could be a scientific reason I feel that way – again having to do with my nervous system issues, etc. Right now the experiences that make up “life” – for instance, smelling flowers in bloom, feeling sun on your skin, talking to family and friends – are not available to me in a many ways. My senses have gone haywire – sound and light sensitivity, not being able to be around more than 1 or 2 people at a time, my daily fevers due to my inability to regulate my body temperature – ALL of these things are keeping me from experiencing life as a “normal person”. Therefore, the hormones that control how I feel about my situation seem to be haywire too. Some days I feel thankful to know the improvements I’ve made from this time last year. But, there are the days when I wonder if I haven’t just traded symptoms basically. For example my heart rate doesn’t go into the 180s when I walk anymore, but I now I have seizures when I didn’t have them before. It’s hard to try and stay positive. That’s the hardest part about all of this. It’s the part that I battle the most – the battle to NOT fall into some depression over things I can’t do or can’t have.
God is working on teaching me how to hold onto hope – not hope in my doctors – but hope in HIM. He’s telling me to hold onto hope in HIS plan for my life, and TRUST in that hope that He is sovereign over my life. He may not have laid an easy path before me but He has never once left me on that path alone. So, I cried out to Him and He answered by sending me to watch another online sermon about Job. Job, a man who despite having everything stripped from him never once kept from hoping in his God. Job was helpless in his own situation and he gave it all over to God. He praised God and even when he cursed the day he was born, he NEVER cursed God for his problems. Don’t worry, I know I’m not the “perfect servant” Job was, but I know God forgives me for my shortcomings though!
I know there is some reason (which I may never know on this earth) why I’m going through this. I don’t even know exactly why God wanted me to start this website or to feel like my story was worth sharing – but I don’t have to know these things. God knows. God’s plans are intricately woven throughout history and sometimes when you step back and look at the “big picture” of what God’s plans are you realize that your pain, hardships, sufferings, etc. are simply just tiny parts in a much larger plan. I pray to keep my hope. I pray for God to fill me with strength of course, but I know that hope in Him is what will get me through to the end of this. I have fought too long and too hard to just lie in this bed and whine. I will see all of this through because I have to and God’s promised that I will not see it through alone. He will carry me through the days that I cannot handle. How do I know that? Because God’s hope lives in my heart and I am blessed to feel God filling me with hope as I type these words. I have been mad and I have cried and I have come to the understanding that I have to continue to hold onto the hope God gives me. I cannot give up hoping and I must remember to keep my hope fresh every day even when I feel like I’m being dragged down. God is my reason for hope.
Here are some of the verses that have touched me and seem to fit with all of this:
“O sing to the Lord a new song; sing to the Lord all the earth.” Psalm 96:1 (NRSV)
“Your steadfast love is as high as the heavens, your faithfulness extends to the clouds.” Psalm 57:10 (NRSV)
“Though the fig tree does not bud and there are no graps on the vines…I will rejoice in the Lord, I will be joyful in God my Savior.” Habakkuk 3:17-18 (NIV)
Wishing you all a happy 4th of July weekend and much love!
K
Seizures aren’t the only set back though, I’m also having difficulty swallowing. I’ve always had some issues swallowing food and even had a test run 5 years ago where I had to swallow a barium tablet while being x-rayed so they could see if there was an obstruction causing the problem. Nothing was there but it showed where the tablet stayed in one part of my esophagus for 10 seconds or so and another area it hung out around 15 to 20 seconds. Doesn’t sound like a long time but it feels like forever. However, the powers at be at that time prescribed me an acid reflux drug and called it done. Just another reason why I don’t tend to trust doctors very much – they’ve missed or misdiagnosed so many of my illnesses in the past! My current swallowing issues are much more serious though. Serious enough that I haven’t been able to swallow pills and when I do they seem to dissolve in my esophagus and give me horrid heartburn. It got to where all I could swallow besides water was ice cream and jello. It actually feels like my throat is closed or that the sides are touching each other. It’s scary and somehow just another expected unusual issue that I seem to keep coming up against. The fear that the choking feeling creates is another problem. I had three “mini-seizures” Sunday afternoon because I felt I was choking. The choking upsets me, my emotions trigger brain activity that somehow ends with seizures. We’re trying to keep me drugged so that doesn’t happen but even so it’s been a rough week.
The doctor believes the swallowing issue could be one of two possibilities. First, it could be a herx reaction from the anti-yeast medication I’ve been on which would make sense because this flared up so quickly. The other reason has to do with my autonomic nervous system malfunctioning and it is haywire right now. To put it very simply, the autonomic nervous system controls all sorts of things from your heart rate, blood pressure, body temperature, etc. Mine has been out of control for years. The doctor thinks at the worst that my autonomic nervous system has been a little “fried” and for now my brain has forgotten how to swallow properly. We have an appointment set up with a speech therapist next week who will work on retraining my brain and esophageal muscles to swallow correctly again. We could have gone this week but we’re praying that this is simply a herx and that since I quit taking the anti-yeast medication on Saturday that we will see a marked improvement in the next few days. If not, I can get in to see the speech therapist this week. The only reason we don’t want to go is because it is almost impossible to get me out, to the hospital, in the 90-100 degree heat, with all the noise and not expect me to either have a seizure or just pass out. We ended my doctor’s appointment with me having crawled out of the wheelchair and onto the cold tile floor. I was clammy and felt faint from all the exertion. So, it isn’t that we don’t want to jump on getting this taken care of, it’s just that sometimes getting me out of the house can be more of a danger than trying to wait this out.
I have also stopped the IV antibiotics for 2 months. We are praying to see a big difference in how I feel since you normally feel worse when you are on treatment than when you are on. I will still be doing a bag of IV fluids every day as well as taking my blood thinner and Benadryl through my PICC line. This will make sure and keep the line open in case we have to go back to IVs after the break. We’re praying that if I do need more antibiotic therapy I will be able to handle orals now instead of having to keep my PICC line in. I can’t begin to tell you how I would love to be able to take a shower or bath without having to keep my arm wrapped and my line protected from the water! Pray that I see strength return to my body and my mind. Pray that I feel God leading me to an end of these IVs and toward a healthier life. Also, please continue to pray for all my treatment friends. I keep up with them and there are a few still at the clinic, some have gone to another clinic for different therapy options, some are home on oral antibiotics – but they ALL need your prayers. Prayers for hope and healing and prayers for God’s love to be with them as they continue down their own paths trying to find their way back to health!
Now, I have been in this bed and cried out to God about all of my troubles and especially this swallowing issue. He knows my pain, suffering, and sorrow. I know there are many other people out there in much worse situations than I. I try to focus on that when I sit here and think about how my “life” is really no life at all. The doctor says there could be a scientific reason I feel that way – again having to do with my nervous system issues, etc. Right now the experiences that make up “life” – for instance, smelling flowers in bloom, feeling sun on your skin, talking to family and friends – are not available to me in a many ways. My senses have gone haywire – sound and light sensitivity, not being able to be around more than 1 or 2 people at a time, my daily fevers due to my inability to regulate my body temperature – ALL of these things are keeping me from experiencing life as a “normal person”. Therefore, the hormones that control how I feel about my situation seem to be haywire too. Some days I feel thankful to know the improvements I’ve made from this time last year. But, there are the days when I wonder if I haven’t just traded symptoms basically. For example my heart rate doesn’t go into the 180s when I walk anymore, but I now I have seizures when I didn’t have them before. It’s hard to try and stay positive. That’s the hardest part about all of this. It’s the part that I battle the most – the battle to NOT fall into some depression over things I can’t do or can’t have.
God is working on teaching me how to hold onto hope – not hope in my doctors – but hope in HIM. He’s telling me to hold onto hope in HIS plan for my life, and TRUST in that hope that He is sovereign over my life. He may not have laid an easy path before me but He has never once left me on that path alone. So, I cried out to Him and He answered by sending me to watch another online sermon about Job. Job, a man who despite having everything stripped from him never once kept from hoping in his God. Job was helpless in his own situation and he gave it all over to God. He praised God and even when he cursed the day he was born, he NEVER cursed God for his problems. Don’t worry, I know I’m not the “perfect servant” Job was, but I know God forgives me for my shortcomings though!
I know there is some reason (which I may never know on this earth) why I’m going through this. I don’t even know exactly why God wanted me to start this website or to feel like my story was worth sharing – but I don’t have to know these things. God knows. God’s plans are intricately woven throughout history and sometimes when you step back and look at the “big picture” of what God’s plans are you realize that your pain, hardships, sufferings, etc. are simply just tiny parts in a much larger plan. I pray to keep my hope. I pray for God to fill me with strength of course, but I know that hope in Him is what will get me through to the end of this. I have fought too long and too hard to just lie in this bed and whine. I will see all of this through because I have to and God’s promised that I will not see it through alone. He will carry me through the days that I cannot handle. How do I know that? Because God’s hope lives in my heart and I am blessed to feel God filling me with hope as I type these words. I have been mad and I have cried and I have come to the understanding that I have to continue to hold onto the hope God gives me. I cannot give up hoping and I must remember to keep my hope fresh every day even when I feel like I’m being dragged down. God is my reason for hope.
Here are some of the verses that have touched me and seem to fit with all of this:
“O sing to the Lord a new song; sing to the Lord all the earth.” Psalm 96:1 (NRSV)
“Your steadfast love is as high as the heavens, your faithfulness extends to the clouds.” Psalm 57:10 (NRSV)
“Though the fig tree does not bud and there are no graps on the vines…I will rejoice in the Lord, I will be joyful in God my Savior.” Habakkuk 3:17-18 (NIV)
Wishing you all a happy 4th of July weekend and much love!
K
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