One Month Count Down

Back to Kansas! Spring Break 2019!

I have officially booked my next visit to see my Kansas doctor. This is the longest breaks in between visits I have ever taken since beginning treatment for Lyme. Some new things will be happening this go round.

For one, I won't be going to the Hansa Center anymore. I am going to miss that place, I thought it was one of the friendliest, warmest environments on earth. But its time for a change, my Dr. along with a few others left the clinic and moved to a new one of their own creation. Why? I don't know. I just know that even good things must come to an end and change doesn't mean for the worst. I am excited to see this new clinic and what sort of environment it has. I know the doctors have been hard at work to make their creation something to brag about and that there will be new therapies involved. 

When I spoke to my doctor on the phone a while back, he told me about some of the new therapies that they will be offering. Some sound similar and some are a new idea to me altogether. I can't wait until I can report back on my progress. Unfortunately, as far as I know, the new clinic does not have a completed website. So I can't exactly share too much about the new clinic, but my doctor assured me that they will be offering next level service. Im not too worried, my doctor has gone above and beyond for me from day 1 and whenever I get frustrated he does his best to come up with a solution. 

I haven't seen my doctor since the beginning of August, that'll be seven months in between doctor visits!!

Granted I had other things going on to support my system in the meantime. Like the clinic I visited in December, I'm sure that offered some benefit, though it was focused more so on brain than anything else. Plus the hyperbaric oxygen this month, but except for herbs and stuff I have put myself on I have stayed on the same protocol since August. Ive held rather steady at that. Some days I do feel miserable and I do hate the world, last week had a handful of those days. Other days I have some nice conversations with people and it all seems worth it. I try to keep my outlook positive. Not everyone gets to overcome Lyme Disease, some people dont even get to live with it. I have, through a lot of effort and tears and screaming and reading, have made it eight years. I want to be one of the ones to get rid of the disease altogether and never let my body feel this type of sick again. I plan on leaving my fragile and finicky constitution behind and rebuilding it for good. 

Last week I was talking to a friend of mine who I see about every week or two, she's had lyme and fibromyalgia for a few decades now. Her and I were talking about how we feel bad for the people who aren't able to seek any treatment or who dont know whats wrong with them, then end up killing themselves out of desperation to reach freedom from the misery. We agreed that it would be nice if we could just sit up and walk right out of our body, leaving it behind. I said it would be nice if I could sell my body, then buy a new one like you would do to an old car. She advised me not to tell to many people that I think its a good idea to sell my body LOL. Turns out that one sounded better in my head than out in the real world.

But there are some nights, the usual sleepless ones where my thoughts go round and round like a broken carousel, where I do think-what if I could just leave my body. Im very grateful for the body and life ive been given, but sometimes I dont really feel like im living in my own body. Its more like sharing an apartment with a few people, each one with a different mood. Too Tired to Care is my favorite roommate, Angry for No Reason is the one I try to avoid. On the good days when I feel happy and energetic-I feel totally different. It feels like my body is my own and I can do with it what I want. I dont feel so invaded or like im sharing my body with whatever deck of cards I was dealt that day.

This last week I started something new. I, of all people, got a gym membership for the first time in my life. I can't remember the last time I seriously thought I could start exercising, even if its just walking on the treadmill. Before the strep two years ago I was beginning to exercise again, but the strep knocked that one out for me and took my brain and my personality with it. God willing, maybe we are finally starting to get closer to the end of that. 

Its been a while since I've cried without provocation. I do still get set off easily and fall into depression, but it really only lasts a day or two then turns into frustration instead (or fades away altogether). It used to take days to get out of a dark place, or weeks. Maybe my next visit to the clinic will help launch my personality back into my head and out of the ditch its been sitting in. My joints haven't been in terrible pain either. My muscles do have their days, but overall minimal complaints, same with dizziness. Fatigue can still be a battle but I suspect that before long we will be able to get this turned around again. 

So really, fatigue, emotions, and insomnia are what are really holding me back. I think if I could sleep, my fatigue would dissipate. Maybe even disappear altogether. My emotions may be less finicky too. 

I am about to try a new sleep medicine, I am hoping that it will work. Its been a while since Ive tried a new drug for sleeping. Ill update on that when something comes of it. 

I haven't been back to counseling in a few months. I got tired of telling some man about my personal issues and then being told to draw pictures. I know its good and it does help. Ive even recommended it to other people. Its just not my thing. Sometimes it feels better to think about slapping the person that caused my emotional issue (that day) rather than draw out whatever Im feeling. I mean I dont ever slap anyone. Just the thought seems a bit more fun LOL

Numbness

What Would the Dr.Order?

One of the things I was hoping to accomplish with the psychiatrist I began seeing in December was getting out of depression. I know its not necessarily a fast process and I'm not done yet, but I was hoping I would notice a change on their protocol. I still feel numb all of the time, unless I'm upset. I can still feel sympathy and feel upset or grief, but I never feel like myself. Lately I haven't really felt like talking to anyone. Some of my friends I have just kinda blown of altogether. I don't feel like myself and its so frustrating.
Ive talked to Dr.psychiatrist about this. Her biggest concern is my irregular sleep patterns. Which I do agree, need to be fixed and they are causing issues of their own and probably making this depression or whatever it is worse. But Ive had sleep issues for over a decade, I almost don't even care anymore. I mean I do care, I would love to sleep and relax at night. But so far I've failed several sleep drugs and a dozen or so sleep supplements. Im not sure what magic results she thinks she's going to get. She talked to me about Belsomra, which my insurance denied. I said I might would try a sleep drug if it was different from what Ive already tried, but Belsomra being $500, not happening. Especially considering it has a strong possibility of being useless and ending up in the trash.
She's holding out on the HBOT as being a big deal and potentially solving a bunch of issues. Its made a difference, so I'm holding out that she's right.
I had a bit higher hopes that this brain specialist would be able to help a little more than it all has. Im not done yet, but I was expecting a bit more benefit to the cost$

I have had some stresses lately. A friend of mine (unsuccessfully) attempted suicide the night of the superbowl. I stayed on the phone with her during the matter trying to bring her down, I dont know if she even remembers it now. But it took a toll on me that night and the next day. I feel for her, I know what its like to be miserable. But...she would rather take her stress out on others than actually resolve the situation. And I can be one of the people she takes her issues out on...

Januar 26 was my 8 year anniversary of getting sick. That weighed on me a little bit but in truth I dont know what to feel, so I just didnt. Last year I was extremely emotional on the 7 year anniversary. I remember crying for at least a week or more, before and after the day. I just flat out could not believe that I was still sic, even with treatment, and still feeling like death. I think I feel better this year than last year, a lot of it is a blur so I dont really remember. I was doing the best year before last. I thought I was almost out of it.
Can I repeat that year??
What magic was I doing then?? I want to do it again.

Some days I do very well and I can pretend that theirs nothing wrong with me. Other days, I leave school, get in my car, and have to stay there a bit before driving. Some days I wake up and I feel like I have the world in my hand, others I don't even want to get out of bed.

I decided to add in Collagen powder to my daily supplement routine, helping address any leaky gut issues. Ive done a lot for leaky gut over the years but...thought this may have some benefit. Im also taking some lyme and parasitic specific supplements right now and I have for a few weeks. In the past I have felt worse when treating parasites, so maybe this is doing something? Walking blindly right now....

Slow New Year

My Mantra to Life-Just Keep Swimming

Well it so seems the beat goes on, im still here even though I haven't posted in a month. Theres some good to that.
I started hyperbaric oxygen three weeks ago, I have one more week remaining. This has been every day, for an hour or more. Its not one of my favorite therapies ive ever done, but I think I am getting results from it though. I have been a bit more alert since starting. A few other people have told me that my color looks better and that I seem more involved in what I do. So my prayer is that the results I get stick and they aren't temporary.

Ive had what I think is a fairly uneventful month. Running the same regular school and work schedule, running it on caffeine that is. I used to never drink caffeine of any sort ever. These days caffeine is whats driving me to function, I don't feel all that bad I just have no energy or motivation. I feel like Ive had my battery drained and life drained out. Yesterday was a coffee and stevia energy drink day, at that I had energy for half the day then went back to my normal steady crash. I still fell asleep at my normal time.
I attribute my recent worsening of fatigue to my lack of sleep. This weekend was especially rough for some reason. I just kept rolling even though I had no energy to roll with, I only do caffeine during the week so it shouldn't have been any residual in my system.

I found myself up late with my thoughts. In a surreality that takes me back to many years of staring out the window at the moon during the late hours of the night. I remember when I used to sit on my nightstand looking up at the moon dreaming of reaching for the stars. I also remember the less than pleasant nights when I would look down at the ground bellow instead, because it would be a much easier place to find myself landing rather than floating through the clouds.
The night is my peace time. I (usually) take my life off work and school and anything else I have going on. I used to read until I was too tired to keep my eyes open. Now my mind just wanders into its own realm. I think of goals id like to accomplish and the dreams I once had. I wonder which ones will become a reality and which ones ill regret never chasing. Its so easy to worry over things that are only relevant right now even when they seem to make up our entire universe. Afterwards is when I can look back and see how minute the subject was.

In this state of fatigue and frustration I have fallen into I have found solace in encouraging others. In my work I can help people and reach out. I can show someone that I can care for them and make them feel special. People in special circumstances appreciate it when you go the extra mile for them, they see it and they feel it. Making someone smile for real, not just a sympathy smile but a genuine smile, is one of the things that keeps me going. I know I am doing at least 1 thing right in my day, after all kindness is free
Though seeing how some people act you would think kindness came with a price tag only the wealthiest and most privileged could afford. I don't understand it.

I made one woman very happy a few weeks, I left her a surprise of encouraging words in her notes for her to find when she got home. I heard from her when she found it and she told me how much she appreciated it and how much she loved how caring I was.
I appreciated her reaction, I knew I was doing something that actually mattered. It wasn't mindless chatter or some material thing that would whither to the dust in a short time. This is someones life, someones presence on this earth. To me, that has a lot of value..
One thing I do not appreciate about this world is how much we are required to immerse ourselves into earthly material things, but we have to. Its our culture. Its our distraction from ourselves. Material is what creates the common bond to create a society.
Maybe if we had more hearts walking around and fewer price tags, we would place value on our friends, family, and neighbors. We all struggle with things in our lives. It just so happens to be that my struggle is my health, which seems to be an endless battle but it isn't. The end will come. Until then, I keep on working.

Even with how "well" I have felt over the last month I have still been weathering some personal issues, as I always feel I am. Im not sure why I can't move on so quickly or why I hold myself back, but I do. And as long as I do some of these things will continue to be an issue for me.
I used to cry a lot. Daily. Multiple times a day. In the car on the way to work. Lunch break. I haven't been anywhere near that type of emotional in a long while. I do wonder, if its because im over the things that made me cry or if its because Im too tired to cry.