I was having a fire...Okay. I will just stop right there. I don't know where the word fire came from. I was trying to write that I was having a hard time coming up with a title for this post. My daughter came into to talk to me and that is what I had typed. So I guess just be ready for this post to be full of screw ups and hopefully you will still be able to figure out what I am trying to say. I titled this post Just Because for exactly that reason. My creative juices have to seem to have left me for now, my brain is a mess, and I am writing just because...Just because I haven't updated in a while and I want too but I guess I was just waiting for something big to happen or something exciting to tell you about. I guess now that the disability thing is said and done I have kind of felt like there is nothing left. I realize that is not true. This blog is not about disability this blog is about my life. And not just my life, but my life and how dealing with Chronic Lyme Disease affects my life. So with that being said, I am going to do my best to give you an update and get back on track with my blog.
I have a lot going with everything right now. I am settling into the routine of my IV's, dealing with work, dealing with kids and sport and school, and I guess everything else people deal with on a regular basis. As far as my IV's go, things are moving along fairly smoothly. I go to my doctor every Tuesday where he accesses Donald. That is done with a specialized needle that has some connection tubing for my IV attached to it. Once accessed the needle is covered with Tegaderm, which is just a big clear bandage, to hold it in place. He gives me all of my supplies to do the other 7 IV's at home and off I go. The needle set up is kind of big, it sticks out of my chest about an inch or so. You can't miss it. It is always a little sore after it is accessed but not to bad. I am limited with how I can sleep with it in and I can't shower with it in. Starting Tuesday night, my husband does my IV's the rest of the week. The whole process of mixing meds, infusing, flushing takes 20 to 30 minutes so it is not too bad. I do have to get up early so he can do it before he goes to work. I would have to give myself credit as being a great wife for the fact I got up at 5:00 one morning so he could do my meds before he went on a dawn surf at Blacks. I have had some herxes with this medication. Although I have had some people say some of my symptoms could be side effects of the Actigall which I take to prevent the side effect of gallstones that the IV Rocephin can cause. For the most part the symptoms have been heart and breathing related. The two things I don't like dealing with. I did have one really weird episode that is hard to describe with just not feeling right. It completely freaked me out. Then I had one day of muscle aches that started and got worse but luckily only lasted one day. For me, that day of muscle aches was significant because it was very similar to a bout of severe muscle aches about two years ago or so. It was a few weeks after I did the Breast Cancer 3 Day. I woke up one morning and my right quad hurt. Then my calf then my left side then my biceps, abs and finally settling in my forearms. I am not talking about just general aches. This was like I had gone to the gym and did a crazy workout and my muscles hurt in very specific spots. I ended up in Urgent Care the pain was so bad and had no known reason. Over the course of a few days it got to the point I lost all my strength in my arms. I couldn't write or even squeeze the toothpaste out of the tube. That is what really set my quest to find out what was wrong with me in motion. The only thing the doctors could say was it must have been a virus. Since that episode I started having episodes of numbness, pain, creepy crawly feeling in my arms, nerve pain in lots of places. Those issues finally got me sent to the Neurologist for an MRI. That is when I was diagnosed (although the doctor never told me, he just put it in his notes) that I most likely had Fibromyalgia. I was also told it was anxiety related and I was prescribed Xanax. Ya, that is going to take all of those feelings away. Sorry to get a little of track.
As best as I can tell it is working. My doctor is expecting the routine of twice a day, four days a week to continue for next 4 months minimum. That brings up the discussion with work which I will get to in a minute. I have a bunch of blood work I need to do for the doctor which is fairly routine. He also said he would really like me to do a different type of co-infection test that checks for co-infection DNA instead of anti-bodies. My doctors two oldest daughters have Lyme and he just did this test on at least one of them. She is in the same boat as me as far as Babesia goes. We both had negative blood tests for Babesia but have symptoms and are both being treated by the medication Mepron. This is the medication this is bright yellow and the consistency of tempura paint. It is also about $1750 a month if the insurance doesn't cover it. So his daughter and I have both been on it about 4 months. He tested his daughter with this other test and she is positive. That means the treatment for that doesn't get to stop when you would usually stop after 4 months. So he is really encouraging me to do it. The downside...the $600 price tag that insurance won't cover. Again, sometimes I wonder why I even have insurance. So I guess we will work that into the plan in the next few weeks. We also still need to work on getting my girls tested. Other than that, at this point, no other part of my treatment gets to change. Still on about 30 pills a day and my gut is really starting to check out. Can't remember if I mentioned last time or not but my CD-57 numbers have dropped a little more...I'm at 33. One we go, I guess.
Now to work and money, money and work. I wish the two were not so intertwined but they are. As I said earlier, I will be on the IV for a minimum of 4 months. My gut feeling is it will be closer to the 6 to 8 months or longer. With that being said, I was asked to talk with my doctor about my return to work. My current approval to be off runs out I think this week. There is still some time the city can work with but I was really thinking I was going to extend my time off by a month or 6 weeks. Then I would come back part time and work back up to full time. When I talked to the doctor last week, I was surprised by his answer to say the least. You can not go back to work at all while the port is in. It was obvious this was not open for discussion. Well okay then. Let me just say that this puts me in a very awkward position. The City is doing what they can but they can't hold out forever. I can say without a doubt I feel that my job is in jeopardy at this point. It is not any ones fault. It is just the way things go. I have decided that it would be unfair to request the use of this catastrophic leave policy where employees can donate sick and vacation time to me because my return is uncertain. Once that time has been donated there is no way to pay it back. If for some reason I can't come back to work it would kill me to have had people donate time to me. My husband is so understanding. Financially this decision sucks but he knows it would tear me up inside. That is about all I feel comfortable saying about work. It is really up in the air and I am afraid I may be forced to walk away. Only God knows at this point. There is nothing I can do to change the out come. It is out of my hands.
Of course the disability denial and this new turn on when I can go back to work really play havoc on the already tight finances. I guess I am really falling in line with a majority of the Lymies out there. This disease takes you for all you are worth and then some. I guess it is just a bummer that when we are stretched over the max, the numbers coming in and going out don't match, that we are running into the time when insurance is probably going to pull the plug on coverage. Between myself and my girls we have about $1200 worth of testing that needs to happen and my IV's will start running us about $200 a week. As God has come through before I have to rely that He will come through again. Money is tight for a majority of people so I feel like I am limited in what I can do to try and raise money to help pay for things. Some tough decisions and lots of prayer lie ahead. I know I have mentioned this before, but I can not tell you how probably 99% of the Lymies I have met are hard core Christians. I mean loud about their faith. Again I will tell you if it wasn't for my faith I would have quit a long time ago. I have my moments still, but with out God this situation would look hopeless. There is no way around it. God must have big things planned and I think I still have things to learn. If I would have gotten all of the lessons He had for me, this disease would be gone by now.
I'm to the point now where I am losing my train of thought a little. I think I probably have more to say can't quite figure it out. I have had some scary brain lapses recently so I don't want to push it. It feels really good to have gotten a lot of this off of my chest and out of my head. I'm sure I'll have more to ramble about soon. I appreciate you reading this and I certainly welcome your comments and questions. Have a good night.