This is the second time that I have attempted a post in the last week. I just don't feel mentally together. I have a lot I would like to say, a lot of thoughts and emotions I want to get out but it seems to be a little difficult right now. We will see how far I get with this attempt.
To start, my treatment continues with no real changes. No changes in the treatment it self and no real changes in how I feel. I can say that on my good days I feel tired. On my bad days, well that could be anything. I had a really bad episode the other night. I got the strange weak feeling I usually get when I am going to start twitching. Instead of twitching or jerking a bunch I would involuntarily contract a muscle or group of muscles and not be able to release them. Does that make sense? These episodes can cause me to hold my breath, which can be a little scary. My arms became kind of useless as I grabbed the dining room chair and couldn't really let go of it. I also lost my ability to speak. I can hear my family talking and understand what they are saying but I can't make the words come out of my mouth. I also can't make my body move the way I want it to. I ended up at the dinner table with a slight tremor, holding onto the chair, unable to talk and unable to feed myself. It is sad that my 4 yr old is feeding me my dinner because I am unable to do so. I ended up at the table alone and had to crawl across the floor when I was done because I couldn't ask for help and I couldn't walk. Shorter lived than some other episodes but probably one of the most intense. I can tell my neurological symptoms have gotten worse. I am having trouble spelling and sometimes using the wrong words. For the most part I can recognize when a word doesn't look right but I don't know how to fix it. That happened with the word "attach". I had is spelled attache. I looked at it and knew that didn't seem right but I had to ask my husband how to spell it correctly.
I am going forward with a new form of testing for Lyme and all of the co-infections this coming Tuesday. My doctor likes it better than the existing testing. It is really expensive, but less than the original testing I went through. It is called Spirostat. I think the best way I can explain it is, it looks for DNA of the bacteria or parasite instead of looking for antibodies you developed after an exposure. It is supposed to be really good. So I am excited about that. I also just did another bunch of blood work I should have the results on soon. We will see where all of this leads.
I have so much I want to say about money and stuff and what important in life but I just can't find the right words. I just want to share from my heart and tell you about some of what we have gone through and give you some things to think about it. Whenever I start to write about it though, it comes out like a major lecture. Let me just say that we are so devastated financially. We are at the point where I can't go get a Starbucks or we can't drive through McDonalds or we may not be able to let the girls go to birthday parties because of money. I just want you to think about your situation and if you could survive more than a month or two with a loss of income from you or your spouse. I think there are very few people prepared to face these situations. We are spoiled more than I have ever wanted to admit. Although, we aren't financially rich so to speak if I wanted a mocha or was to tired to cook dinner do big deal. How would handle having those things taken away from you. Cutting back is one thing, we are really having to look at changing a whole lot in our life. I know a lot of people, not just lymies, have to face a situation like this (especially in this economy) but wow is it harder than I thought. I am trying to be creative and just make sure we are making the best choices possible. I am putting everything I can on craigslist to make a few bucks. I don't want to put groceries on credit cards. We aren't even to the point of having to pay for my IV's yet. Things are only going to get tighter. It is just a reminder of how unimportant "stuff"is but it can be a big shock when you aren't used to having to live this tight. Just please look at your situation, and think about how well you and your family would adapt if you had to go through this. I pray none of you do, it is harder than you think. Sorry for the sob story. It didn't come out exactly the way I wanted it to, but it is the truth.
That leads me to another point. I am working on changing up our families diet. This is based on a book my doctor wanted me to read. The short version is you eat all the eggs, meat, veggies and fruit you want. Dairy is supposed to be limited and you are not supposed to have the grains, sugars, etc...Now I can't cut the whole grains and carbs completely but we are trying a modified version of it. The problem comes in when you are faced with such a financial problem. The doctors want you to go organic and healthy which can be hard to do on a tight budget. Mac and cheese, cup o noodles, and some of that gets really cheap but is so bad for you. So I am trying to find the balance between the two. The few weeks we jumped into the diet weren't too bad. I am finding some good deals on meat (can be any kind) and going for fresh fruits and veggies. Trying to go with whatever is sale. It will take a little time to get it worked out but I am hoping we can get there. The basic premise behind this diet has to do with the fact that blood sugar issues are the real cause of most or all of our major health issues not the fat and cholesterol like we are taught. If we go back to "cave man" style of hunting and gathering we will better off. The issue with grains is that they are highly inflammatory for most people and didn't really come into our diets until later. So anyways...I will try and keep you updated about how the diet is going for the family.
So I guess that is it for now. Kind of feel like Dory from Nemo right now-"Just keep swimming. Just keep swimming. Just keep swimming, swimming..." Thats all I can do is just keep swimming and trusting God.