For the past 2 1/2 weeks, I have been on a break from treatment. During this time, I have been looking for missing puzzle pieces. I know that something isn’t quite right. It has been a very long time that I have been stuck. I know my own body, especially going through what I would call nothing short of hell for over three years now, I can tell something isn’t quite right.
I had a visit with Dr. S, for a chiropractic adjustment and to talk about how I am feeling and what is going on. I have great faith in him, and I think if anyone can try to find the missing pieces, it will be him. Although I see one of the leading Lyme doctors in the country, Dr S has been a big part of my treatment since my diagnosis.
During my appointment, I had a complete meltdown. And when I say meltdown, I mean a MELTDOWN. Tissues, mascara running down my face, snots, and all. I think even he teared up a bit as he grabbed the tissues as well. He has seen it all. He is angry that I haven’t gotten better. That my many doctors have been failing me. I think I have just held in everything for such a long time, my butterflies, rainbows, and unicorns for all to see, when I have been more than discouraged and sad on the inside.
While talking to him, I rambled on and on, and could feel my body rocking back and forth. My hands jerking. He agreed with me, something is definitely missing. One of the first conclusions is that I am being overmedicated for the progress I am making… which is pretty much none. It would be a different story if these excruciatingly aggressive protocols were working and I was constantly improving, but it is not.
Is there an autoimmune disease in the way? Do I just have permanent damage from all of this? I have been told already by more than one doctor I will never be the same. Sometimes I think to myself…is this it? Is this now what my life will forever be? In some ways, I am slowly learning to accept the possibility, but I know I need to keep fighting like hell because I still have hope that there is no way that this is it for me. I am strong and I am brave, even though I surely didn’t feel like it during my visit. I felt like a weak loser.
To end my fun appointment, I couldn’t find my keys for the life of me. I was digging through my purse, and he went out to my car to help me look for him. My car is something I am not proud of. It looks like a terrible issue of hoarders. Bottles in the passenger seat, all the way beyond the passenger seat. I kind of wish that day never happened. You can’t unsee my car. You can’t unsee my meltdown. Needless to say, I was beyond embarrassed when it was all over and I made my way back home.
My game plan during my time off of treatment until I had to go back in two weeks is detox detox detox. Work on Candida and gut health. I have gastritis, so I really need to baby my stomach. See if there is any neurological improvements with some supplements and trying to get rid of everything from my system.
Before I started my zero starch and sugar diet, I had my last supper. It was buffet time. Haha. I stuffed my face with sushi, stuffed mushrooms, seafood and veggies, rangoons, and banana cream pie. I had to have had six plates of food. It was beyond disgusting, almost like a hotdog eating contest, but it was sooo good. I have been taking Diflucan, and I have been doing an excellent job with my diet I must say. It has been hard, I even had a dream about eating Burger King’s buffalo chicken fries. In my dream, they were magical. Haha.
Although I have lost a couple pounds and I think I am a little less bloaty looking, I am guessing I have lost an inch or two around my waist. I am still having hmm.. bathroom issues that have not gotten better whatsoever.
I also had my yearly appointment with my eye doctor. He has also seen me at my worst, so nothing was all that surprising to him. Eye doctor = fail. One of my symptoms that I have dealt with for a long time is light sensitivity. It is one of my triggers for having tics. Eye doctors have to flash lights into your eyes. I went off like a bomb. *Bah* *Hand raise* Cringe* My cringe tic is fairly new. Almost like when you taste something really sour. It took him a bit to get the exam done, since I was all over the place.
Luckily, the structure of my eyes are fine. They are very dry and a teensy bit inflammed however. He told me that that can cause some light sensitivities, but not remotely to the degree I have. Especially since I turn into a neurological mess. He recommended a follow up with my neurologist. I am not too sure if that will happen though.. he dropped me when I was at my sickest. He didn’t want to be responsible for my care. It might be worth a phone call though, see if he is willing to give me a follow up to get his opinion.
This weekend Dave and I had intentions of going out to dinner. By 4:00, I was toast. I could barely move. So, it was a take-out and movie night. I use to get upset about not doing anything since I feel like a hermit and dinner is really my getaway that is really big and exciting for me even though it is so simple, but I am okay with it now. I know pushing myself too hard with this sort of thing ends very badly.
Last night I had a POTS episode. I was trying to get ready for bed, and all of a sudden I began to black out. I laid down immediately, as I know I will collapse, and by the time I came to, I grabbed my purse and hit my heart monitor button, and used my blood pressure cuff. Granted, I know since I had begun to come to, the levels would have likely improved, but my heart rate was 115, my blood pressure was 111/64. No wonder I blacked out.
Today I have been so foggy, and my legs are completely numb. I had my cringe tic at work, I had to lean on walls and the counter to talk, and my coworker kind of had a “Hellooooo are you there?!” moment. I was in complete outer space. My writing probably sucks today, so you will have to excuse me. My arms feel like they are incredibly heavy. I just want to take a nap.
During this break, Dave has at least forced me to use my bike twice. I have been slacking, because I have just been sleeping. Once you get up from a 4+ hour nap you really aren’t up to exercising. You would rather mold into the couch. Not going to lie, it was extremely painful, even just doing 10 minutes each time.
Over this week I was pretty sad that I have had some cruel things done to me, although not intentional I am sure, but it doesn’t take away the sting. At this point I just sleep it off, and try to just roll my eyes. I think it is forgotten that I have been the one person that has been there when absolutely no one else was in these situations. I am a good friend, and I guess, well.. I feel like I am dust in the wind sometimes. Do I think these people woke up intending to hurt me? No, probably not. So I need to let it all go. One of the best pieces of advice I have ever gotten. Thanks Amanda. 🙂 xo
My appointment is tomorrow with Dr S. I do not know if anything will come of my appointment, if there was any revelations in my blood work. I like to do my own research so I can advocate for myself and be on the same page (I advise you all to do the same).
Some of my blood work was kind of difficult to understand, as upon reading some antibodies seemed like they shouldn’t be in your system at all, and my ANA antibodies were smack on the dot “borderline”. I will have to wait. I am wondering what my game plan is going to be until my next DC appointment. In the back of my mind at least, I know I am in good hands and I will be okay with whatever is to come.
So next time I get back to writing, I am hoping I might have some answers for you. Hopefully not non answers.
Either way, wish me luck. I will give you all an update as soon as I can. I hope you are all having a good day!