Lyme in the Brain

This post isn't very exciting or happy for that matter. It is one that I need to write however just to get rid of some of the junk floating around inside of me. It is also one that I will wonder if I should even make public. I realize though that one you have a choice to read this and second it is the truth. This is my reality and the reality for a lot of other lymies. It wasn't until more recently that I really began to understand how much this disease can and does mess with your head. Besides the forgetfulness, ADD and brainfog type symptoms it really can begin to mess with your emotions and feelings. I realize now when people close to me have commented on how I have changed..."You never used to be so impatient" or "You always used to be happy and now you never seem to be happy" that the lyme disease has gotten to my brain. I know it must be easy from the outside looking in to think that I am blaming everything on lyme. Well is some ways I am but it is only because that is the reality of this disease. It can get to every organ, tissue and system in your body. Nothing is off limits. I have had some really rough times as a mom feeling so guilty and ashamed for my outbursts and yelling at my kids. I could never understand where these frustrated feelings would come from. It is a very real feeling that builds up inside of me so quickly and I just lose it. I have done it over the phone to credit card people, in the Verizon store, at my husband. I have embarrassed him on at least a few occasions for losing my temper. It is a very out of control feeling. After learning more about this disease and hearing from other lyme patients I realize that those episodes were what is known as Lyme Rage. I haven't had it nearly as much but in the last week or two it has come creeping back. I would just rather not be around anyone for fear they may push my buttons. On top of this and it seems most often when I am in this state of mind I am most prone to depression. I do not believe I will need to take medication for this. I just need to get rid of the lyme. However, if you have never been depressed, it can be a very dark place. These are the moments when I have literally fallen on the floor, sobbing and screaming at God to fix this, to take me out of the pit I am in because I didn't know what would happen if it went any further. I am so thankful God has rescued me each time. Then I get to this place where I almost feel nothing. That happened this morning. I couldn't figure out what to do. I needed to go the store but I needed to figure out if I even had money to get what I needed or I guess wanted. I wanted to get a coffee but knew I shouldn't spend my last few bucks on that. I ended up sitting in my truck in a parking lot listening to the radio unable to make a decision on anything. I eventually ended up back at home without spending a penny. I just can't seem to make up my mind about simple things and everything becomes a big deal. I need to eat but I am not really hungry and nothing sounds good so it would be easier to just avoid that. But if I don't eat I can't take me medicine which means I am prolonging getting better. It just becomes almost anxiety producing to have to think about anything. I would rather just stay in bed under the covers until this passes. Not the way my life works. It is very hard to explain this to someone including my husband. I think most people with this disease or even people with depression would tell you it is very hard to explain. It is not just a matter of getting over it, thinking positive and it will all be okay. Very aggravating and something I hope has big improvements when I am all done with this and that any phases of this that I experience while I am getting better will be short. Just know that in this state of mind everything around me is very overwhelming and don't expect me to make a decision on anything. With that being said, I really don't want to discuss it but will just ask for a little understanding and a lot prayers. Thanks.

I Spoke To Soon

Some of my lyme friends have had a really hard time lately. They seem to be lapsing or just having really bad herxes. In fact my one friend ended up in the ER after having a seizure and losing consciousness. To read her account of what happend is downright scary. In typical lyme fashion, once in the ER they can't find anything wrong with her. Blood work looks good, PICC line looks fine, EKG is good. So frustrating as you are left guessing what your problem is. I have probably told this story before but I will tell it again...Shortly before I got diagnosed with lyme, I had a really scary episode. I got up to get ready for work. Luckily my husband was home at that time. I got in the shower and actually wasn't feeling too bad. I think I may have even slept good the night before. A few minutes into my shower I got this really strange feeling and I almost passed out.  Thankfully I didn't and was able to get out of the shower. I remember sitting down and calling for my husband. I just said I don't know whats wrong with me. I almost passed out and I don't feel right. I couldn't even describe how I felt other than not right and it was scary. I was so close to calling 911. Of course I was living in the city I work in and didn't want my "guys" at the FD to have to take me to the hospital again. That already happened once when my heart rate was cranking. We had had a stress test earlier that day and my heart rate shot up to 272. Yes...that is correct 272. I even have the print out to prove it. A few hours later my heart was at 150. I was sitting at my desk. So I had to go to the station and get checked out. Not fun when you work with these guys on a regular basis. They said sorry, you gotta go. In both of those events, I had a CT to make sure I didn't have a pulmonary embolism. All blood work came back normal and they had to send me home with no idea what was wrong with me. Talk about feeling like you are crazy!
After reading so much about my what my friends and other lyme patients have gone through, I just said to my family how blessed I feel that I haven't had a seizure or anything. In fact, I said, it is weird with as sick as all my doctors say I am, and all my tests show I am, my symptoms although bad have not been as serious as some other people. I don't know if that means we are treating things just with the right amount or that we aren't getting to the bugs like we should. Hopefully this new blood test will tell. (Unfortunately, they ran out of kits and I have to wait until next Tuesday to have it done. I was bummed.) I am wondering if I spoke to soon. I went to my usual Tuesday appointment this morning to have my port accessed and first IV done. I ate something and was drinking plenty so my anticipated blood test would go off with no problems. Well God must of known what was coming because if I would have had my blood test first I think things would have gone worse. The nurse came in and hooked me up as my doctor was out of town. She actually checked my blood pressure ahead of time which we usually don't do but it was normal. We opened up the IV the same as we always do. It seemed like a matter of seconds and I started to not feel good. I got really warm, lightheaded and dizzy. I was sitting down and pushed my stuff out of the way cause I thought I was going to have lay down so I didn't pass out. The problem when I feel like this is no position makes me feel better. I still feel like I might black out even if I am laying down. The nurse came back in and I just said I am not doing good. I was powering down my water so she brought me some more and told me to just sit.  Our guess is that I didn't like the magnesium in my IV this morning. It was just to much to quick. Horrible feeling though. My heart was pounding so I checked my heart rate with an app I have on my phone. That didn't help as it was jumping all over. I usually have luck with this app and it seems to be right on. This time it was going anywhere between 92 and 200. Well that wasn't helping me relax. I had the nurse check it and it seemed okay to her. I finally started to feel better. Made it home okay and ate some more. I have drinking lots. I definitely seem to be herxing today as I have had some joint and bone pain and just don't feel good. I am hoping I feel okay later because it is Jenna's first softball game ever and I certainly don't want to miss it. I am a little nervous because I have been really bad about taking some liquid supplements. I told myself I have to get really back on track with not missing a thing but I decided I need to take this supplement slow like I did in the beginning. I think it helps bring the bugs out of hiding and I haven't really taken it since I have been on my IV. If that is the case, I may start killing a lot more bugs which means I will feel way worse. So I will take it slow and do everything I need to do. I just have to say that dealing with this disease really is a full time job and my life doesn't allow me or many other people to do nothing but deal with this. I still need to try and get the kids up and ready for school. If I stopped doing everything things would get so much more difficult for my family but I am realizing I need to cut back. I am really going to try and focus on my diet, meds, and things to help detox. Plus a lot of prayer and time in the Bible. We will see where things go but I am praying I don't go where I did this morning again. With that I am off to try and nap...wish me luck. I couldn't sleep last night.

Time for change

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.

Just Because

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.