Well it has been a couple of weeks since I last update. You know I don't usually read what I last wrote so if I repeat myself, I'm sorry. Things have continued to backslide somewhat as far as my symptoms go and everything is so up in the air. I won't be dealing with work issues until at least next week. As much as I am trying to just trust God and not worry about it I catch myself getting a little worked up. Bottom line on this issue- financially I need to keep working (at least from my earthly perspective) health wise I probably shouldn't be working. I have been having a hard enough time keeping up on everything just being back at work part time. I am not great about getting all of my pills and stuff in and this is while I'm on the antibiotic break. I can't imagine what life is going to be like working, with kids back in school, and going back on IV's in two weeks. Not looking forward to it all and I think I have been stressing myself out about it a little.
I feel like since I stopped my meds that I have started to regress. The seizures/twitching are definitely back, pain is back, muscle spasms have increased, memory and brain function just plain suck, fatigue is getting worse, weakness is increasing, heart issues, dizziness, on and on and on the list goes...At this point I am feeling like very little progress has been made. Just last night I had one of my really weird episodes where I can't help but wonder if I might die before the morning. It is so hard to explain but you feel so strange. It's almost like you feel your body is shutting down. I don't know if its the second heart med or what but my heart rate got down to like 61 which started to freak me out a little. When you consistently run at about 88 bpm or higher and now you feel your heart pounding while you are watching the rate continue to drop, let me just say it's not exactly comforting.
I love my doctors and I have to have faith that they are doing the right things but I can't help but wonder if I am missing something in my treatment. I know this may be a forever battle on some level but I had hope at some point that I would get some of my life back. At this point I am not so sure. It's not that all hope is lost but I can't express how disheartening it can be when you begin to wonder if this is as good as it's going to get. I believe some of my frustration comes from realizing some struggles I have had and maybe some missed opportunities in my life have been because of this awful disease. I just didn't realize it at the time. I try not to spend a lot of time dwelling on the past and looking at everything Lyme has taken from me but it surfaces now and then.
I know God sees the bigger picture and has a plan and I am trying so hard to be okay with what that plan is. But in my heart of hearts, I am afraid this thing is going to take my life. I prayed last night that I be okay with whatever God had in store. I told him I wanted to be hear for my kids and that I felt I had more left to do but if it His will that I be taken earlier that I could have ever imagined that I needed to be okay with that. It was surreal to be uttering those words. God please don't take me yet. I don't want to die.
I am looking into a center in Kansas that I can go to for treatment. Of course my fear is the cost. I am sure it will not be cheap. My parents ask me all the time what else can we be doing to get me better. Frankly, I don't have a clue. I don't know where to go or what to do next. I guess I need to try and get my husband or parents or a friend to help me figure this out. I just realized that I (the control freak) have done almost all of the research and really run this show with selecting doctors and cluing everyone else in on what is going on and how to try and fix it. My husband and dad did learn some from going with me to get my IV's in the beginning but I don't think they have ever really researched this disease. I am blessed to have as much support as I do but I guess I am actually admitting I could use some more. I would love for someone else to research all of this specific to me and suggest something. Sometimes I feel like I am pulling teeth and torturing friends and family, telling them about lyme, asking them to watch documentaries, etc...Anyways who knows what will happen next. I need to call or e-mail Kansas now. (It's called the Hansa Center for anyone who is interested)
Well I guess that catches you up a little bit. Frustration has been my primary emotion lately and as you can tell I am physically getting my butt kicked again and I just am not sure what to do next. Just gonna keep moving forward one moment at a time. Lord knows this disease operates that way and I have gone from fine to bad in nothing flat. Just keep me and all the other lymies in your prayers. My heart breaks daily for everything that some of my friends are going through. From being severely physically ill to lack of money to no support...hang in there friends we will get through this.
Tuesday, August 23, 2011
Tuesday, August 9, 2011
The gas tank is getting low
"I don't need easy, I just need possible"- Bethany Hamilton, Soul Surfer
This is beginning to feel like the longest road trip ever. Although I am still fairly content to be riding shotgun I am finding hard to not point out to the driver that the gas tank is getting low. I am sure the driver(Jesus) is checking the gauges and knows the gas tank(me) is getting low on fuel. There are just some days that I get a little down and just think I can't continue doing this. I was in this frame of mind just a few days ago. Here I was thinking about how I was having a "good day", meaning not really feeling sick but after being out about half of the day I was so exhausted I felt like I could have slept for days. So even on my good days, the tiredness and fatigue sets in and becomes overwhelming. I just thought I can't imagine having to live the rest of my life feeling this tired. I may be able to deal with some of the pain better than I could the fatigue. For me fatigue just takes the joy out of anything I am doing. It takes so much effort to do something it makes everything a chore. So frustrating to say the least.
With summer break coming to an end and me being back at work part time, I have also been feeling like I just don't have time for anything. I don't have time to be sick, to be a mom, to be at work...my life doesn't have time for life. My treatment and taking care of myself start to suffer a little when I am at work and things are busy. I get easily overwhelmed with how much there is to do. I don't have a clue how I survived as long as I did being sick while working full time and doing everything else. I am not ready yet to throw in the towel though. I don't think I will ever be ready to quit work because I know my family needs the money. However, this is part of me giving up control. This work issue is out of my hands as I see it. I am caught between the doctor, this disease, and the City. The end of 30 days is approaching. I see the doctor Thursday and I guess will be getting another note from him. Just as I suspected, nothing has changed in the last 30 days. I definitely have not improved but on the flip side I have not regressed like I thought I might. I have had some change in symptoms but I have managed okay. I will say I have had to take some time off for having a bad herx or two but otherwise have maintained okay.
I did have a really bad but short lived "twitching"episode last night. Come to find out, a number of people consider those episodes seizures. I never did because I never lost consciousness during them. I know exactly whats going on even if I can't respond. Either way, I hate it when it happens but we get through them each and every time. My pain has been up a little. More muscle pain and weakness, less joint pain. I am starting to realize that my muscles are finally starting to get extremely weak. I really need to get back to the gym and do some weight training. It really hit me when I could barely get a gallon of milk out of the fridge. A little scary but I know I just need to work my muscles. The heart has kind of been the same. Trying to focus on some of the meditation exercises, although I haven't done them everyday. I still get my butt kicked with minimal exertion. I am having more palpitations and dizzy or "drunk" feeling episodes. It is so weird to feel like your heart is racing and beating out of your chest and the rate is normal. I have a bunch of blood work to get in for the cardiologist at some point. I need to do it mid day though so they can adequately measure the level of my one heart med. Then we will know whether or not we can increase it, I guess. The crepiditis in my joints is out of control. They all sound horrible but at least some of the pain is down for now.
The sauna is awesome. It is fairly relaxing when I am in it but certainly kicks my butt later. (I think everything is kicking my butt...haha) I am trying to take Chlorella before and after. It is an algae and is supposed to absorb some of the toxins. Working again on my diet. Trying to just make so small lasting changes. I don't know how anyone can go on these crazy healthy diets, some of which are so restrictive. My problem is I want instant results. I know its not going to happen but in my world, if I went a day without junk than I want to feel a noticeable difference. Not this, I have gone 3 weeks without gluten, dairy, and sugar and I think I might feel a tiny bit better. Sorry, it's just how I am. I am trying though (again). Sugar is the big one for me I think. Gluten would be next. So, just working on one little thing at a time. It's lame because sugar is in everything! Sooner or later I will get there. Maybe my one doc is right, if I just work on adding things, that will be easier than taking things away. I have been working on adding my protein shake but I haven't been a 100%. Now maybe I will focus on adding a veggie juice in. Hopefully if I keep adding in the healthy things the bad things will have to go because there just won't be room for them. I like that idea.
God has continued to provide for us financially. Like I said last time, my husband and I feel like God is doing some work behind the scenes we just aren't at a point of sharing yet. I am still excited to see where He is leading us. I am glad I go to the doctor on Thursday so I can discuss our outstanding medical bill. I just opened another one and it had gone up by over $400 dollars so I guess we owe about $1750 to catch up. It almost looks like the insurance stopped paying sooner than I thought. Not cool but we will get through it. I think the doctors office will work with us on payments. I am just hoping to try and get this resolved before it all starts again in a month. Either way, I feel blessed that between my family, my parents, and due to some awesome friends we have made it this far. The only treatment things I have turned down at this point due to money have been hbot and going to the Klinek and Germany. I feel very blessed to have gotten my IV this long and every other med the doc has wanted.
Well my brain is starting to get a little lost so I guess I should end this update for now. Please continue to keep us in your thoughts and prayers. I have another small medical concern that I have to address with the doctor and I could use some extra prayers for that. I will probably post an update later this week depending on what the doctor says or if anything new comes up. I am going to try and add some more photos to my website so don't forget to check it out. If you are blessed financially and want to help us cover my medical expenses you can also do that through my donation page. There is a chance we maybe able to do a local fundraiser to help out, and if that works out I will certainly let you know. Thanks again for all your support. I hope and pray you are all doing well.
This is beginning to feel like the longest road trip ever. Although I am still fairly content to be riding shotgun I am finding hard to not point out to the driver that the gas tank is getting low. I am sure the driver(Jesus) is checking the gauges and knows the gas tank(me) is getting low on fuel. There are just some days that I get a little down and just think I can't continue doing this. I was in this frame of mind just a few days ago. Here I was thinking about how I was having a "good day", meaning not really feeling sick but after being out about half of the day I was so exhausted I felt like I could have slept for days. So even on my good days, the tiredness and fatigue sets in and becomes overwhelming. I just thought I can't imagine having to live the rest of my life feeling this tired. I may be able to deal with some of the pain better than I could the fatigue. For me fatigue just takes the joy out of anything I am doing. It takes so much effort to do something it makes everything a chore. So frustrating to say the least.
With summer break coming to an end and me being back at work part time, I have also been feeling like I just don't have time for anything. I don't have time to be sick, to be a mom, to be at work...my life doesn't have time for life. My treatment and taking care of myself start to suffer a little when I am at work and things are busy. I get easily overwhelmed with how much there is to do. I don't have a clue how I survived as long as I did being sick while working full time and doing everything else. I am not ready yet to throw in the towel though. I don't think I will ever be ready to quit work because I know my family needs the money. However, this is part of me giving up control. This work issue is out of my hands as I see it. I am caught between the doctor, this disease, and the City. The end of 30 days is approaching. I see the doctor Thursday and I guess will be getting another note from him. Just as I suspected, nothing has changed in the last 30 days. I definitely have not improved but on the flip side I have not regressed like I thought I might. I have had some change in symptoms but I have managed okay. I will say I have had to take some time off for having a bad herx or two but otherwise have maintained okay.
I did have a really bad but short lived "twitching"episode last night. Come to find out, a number of people consider those episodes seizures. I never did because I never lost consciousness during them. I know exactly whats going on even if I can't respond. Either way, I hate it when it happens but we get through them each and every time. My pain has been up a little. More muscle pain and weakness, less joint pain. I am starting to realize that my muscles are finally starting to get extremely weak. I really need to get back to the gym and do some weight training. It really hit me when I could barely get a gallon of milk out of the fridge. A little scary but I know I just need to work my muscles. The heart has kind of been the same. Trying to focus on some of the meditation exercises, although I haven't done them everyday. I still get my butt kicked with minimal exertion. I am having more palpitations and dizzy or "drunk" feeling episodes. It is so weird to feel like your heart is racing and beating out of your chest and the rate is normal. I have a bunch of blood work to get in for the cardiologist at some point. I need to do it mid day though so they can adequately measure the level of my one heart med. Then we will know whether or not we can increase it, I guess. The crepiditis in my joints is out of control. They all sound horrible but at least some of the pain is down for now.
The sauna is awesome. It is fairly relaxing when I am in it but certainly kicks my butt later. (I think everything is kicking my butt...haha) I am trying to take Chlorella before and after. It is an algae and is supposed to absorb some of the toxins. Working again on my diet. Trying to just make so small lasting changes. I don't know how anyone can go on these crazy healthy diets, some of which are so restrictive. My problem is I want instant results. I know its not going to happen but in my world, if I went a day without junk than I want to feel a noticeable difference. Not this, I have gone 3 weeks without gluten, dairy, and sugar and I think I might feel a tiny bit better. Sorry, it's just how I am. I am trying though (again). Sugar is the big one for me I think. Gluten would be next. So, just working on one little thing at a time. It's lame because sugar is in everything! Sooner or later I will get there. Maybe my one doc is right, if I just work on adding things, that will be easier than taking things away. I have been working on adding my protein shake but I haven't been a 100%. Now maybe I will focus on adding a veggie juice in. Hopefully if I keep adding in the healthy things the bad things will have to go because there just won't be room for them. I like that idea.
God has continued to provide for us financially. Like I said last time, my husband and I feel like God is doing some work behind the scenes we just aren't at a point of sharing yet. I am still excited to see where He is leading us. I am glad I go to the doctor on Thursday so I can discuss our outstanding medical bill. I just opened another one and it had gone up by over $400 dollars so I guess we owe about $1750 to catch up. It almost looks like the insurance stopped paying sooner than I thought. Not cool but we will get through it. I think the doctors office will work with us on payments. I am just hoping to try and get this resolved before it all starts again in a month. Either way, I feel blessed that between my family, my parents, and due to some awesome friends we have made it this far. The only treatment things I have turned down at this point due to money have been hbot and going to the Klinek and Germany. I feel very blessed to have gotten my IV this long and every other med the doc has wanted.
Well my brain is starting to get a little lost so I guess I should end this update for now. Please continue to keep us in your thoughts and prayers. I have another small medical concern that I have to address with the doctor and I could use some extra prayers for that. I will probably post an update later this week depending on what the doctor says or if anything new comes up. I am going to try and add some more photos to my website so don't forget to check it out. If you are blessed financially and want to help us cover my medical expenses you can also do that through my donation page. There is a chance we maybe able to do a local fundraiser to help out, and if that works out I will certainly let you know. Thanks again for all your support. I hope and pray you are all doing well.
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