Waiting Game?

So, I know it has been a long time since I have made an entry. Once again, thank you all for your continued support and thoughts and prayers. It has been a very busy summer, and there were so many times I wanted to fill you all in, but I just didn't have it in me. I was doing unbelievably well. So well in fact that Jason and I were just waiting for things to fall apart. When you have lived with a disease like this for as long as we have, you understand that if there is a high high, there will eventually be a low low. Luckily that hasn't happened! Dr. Gorson seems pretty convinced that it isn't ever going to happen again. We aren't so sure... but we are trying to think positively.

There hasn't been a real low this summer, but that isn't to say things have been easy. I was having intermittent symptoms which I was able to control through extra rest- honestly, there are days that this 34 year old woman feels very much like her 4 year old daughter- I just don't want to lay down in the middle of the day!!! For a while there, we were doing great, as long as I went to bed reasonably early, remembered to eat 3 times a day plus snacks, took my meds and took a nap each day. It wasn't a terrible existence, just not totally reasonable- it is hard to live a normal life when you have to eat and sleep like a toddler. See, this is one of the reasons I didn't want to write. I really dislike complaining. Life is precious, our children are wonderful and we have a really fun social life and a fantastic marriage, so complaining about needing to nap sounds pretty silly to me. Regardless- that was where I was.


Some scary moments...

As I was saying, things were going very well, and then I started having these pains in my breasts. Thankfully it turned out to be basically nothing- just two breast infections followed by some abscesses that ended up draining on their own. It was a stressful time, but I was feeling good otherwise. In fact, I felt well enough that we had started walking around the block just about every night. So when my legs began to hurt, and my knees started to swell, I figured I had just pushed too hard. And we took a break from our walks. The pain continued, and I began feeling like I had a hangover all the time. Aches and pains, headaches, neck pain and insane dizziness. Finally one morning I woke up and just completely couldn't walk. And of course the Myasthenia reared it's ugly head in a major way. Nothing helped. No amount of sleep, meds or even wine gave me relief. So I called Gorson- we agreed that it didn't sound like it was MG- I mean the pain, that is. Off to my primary care- I went hobbled right in and said, I either have Lyme disease or Rhumatoid arthritis. After a 2 hour exam, she came up with "you either have Lyme disease or RA". She has been added to the list of people who think I deserve a medical degree just for living through all this over and over again.

Add one more medicine to my list. I did get relief within a few days, and now of course I am paranoid about just walking outside, and checking the kids for spots at least 10 times a day. All seemed to be improving, and I was just so relieved that it wasn't RA. I don't know how I could handle a third auto-immune disease. The meds made me sick to my stomach, but I figured I could handle anything for a month. Jason left for Guam with me improving steadily as the days went on. That was until I went into the sun. I am apparently very sensitive to this medicine, and exposure to the sun makes it much more severe. So the burning sensation started , and intensified, and intensified, until I thought I was going to rip my skin off from the itching and burning. I spent the entire night in the shower- it was the only thing that gave me even temporary relief.

Super Hero Complex

Here is where the stubborness of Claire comes in. I most definately should have gone to the ER. Oh well. Hopefully there won't be a next time, but if there is, I will know better than to try to tough it out. I am not sure when I am going to learn that health matters are not really a situation where Mind over Matter works. The power of positive thinking is great and all, but I absolutely must face the fact that I just have these diseases and I need to keep treating myself as if I were my own child, rather than behaving as if I am superwoman. (I am sure that I will never be convinced that I am not part super hero!) I believe that I am always going to make it through things, and that is a good thing, in my mind. It is a matter of setting limits and realizing when it is time to go for help. Good lesson for a myasthnic- and one I have to keep being reminded of.

Current Situation

I have finally finished the antibiotics for the Lyme disease, and the only residual effects seem to be that I am very stiff in the mornings and if I have been sitting for a long time. That will hopefully pass with the stretching and exercise that I am trying to keep at.

Unfortunately, the MG has taken its toll on me lately. Not sure what is going on. I probably have some kind of secondary infection- but I am not getting worse as the days go on, and I am prepared to wait a few more days unless there is a big change in that. If anyone is wondering why I haven't called you in a while, I just don't want to have to keep cleaning the phone as I spit all over it trying to have a conversation. heehee. It is a bit uncomfortable to talk, but I am not having and swallowing or breathing issues, and that is the upside! The kids are learning to work things out for themselves, since it is too difficult for me to talk to get involved in the skirmishes that a 4 and a 2 year old have every 10 minutes. :)

Again, thank you all for your continued thoughts and prayers. Love you! Claire