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.

Scrambled Eggs

I Had Great Weekend!
This weekend I flew to Missouri to see E and my best friend. E picked me up from the airport and helped me surprise my best friend friday night.
For two guys with chronic fatigue and brain fog we did pretty great I would say! He brought me back to the dorm from the airport and we dropped my stuff on his room. We went down to my friends room and he wasn't there, but another friend of theirs was.
So the other friend called my best freind and said he had hurt his foot and needed some help, that he would be waiting in his room for him. I waited behind the door and E sat in the middle watching for them to show up.
It didnt take too long for him to show up, E warned me he was about to walk in so I tucked myself further behind the door. My friend walked over to the guy pretending to be in pain and looked at his foot. I waited for him to start paying attention to the foot, then i yelled across the room "so what do you think is wrong with it??" and he freaked out! He couldn't believe I was standing there in his room, 600 miles from home. He knew I was coming, but he thought I would be coming a day later. The surprise was priceless, should have gotten it on video!

This was also my first time meeting E in person, making this weekend just that much better. I stayed in his room with him both nights, the second night my best friend joined also. We had our own little party going. Two sick guys pretending that life is good and another one whose just going with the flow. I miss them already.

Last night at one of the school events I had a massive panic attack. We were sitting in an auditorium, after standing in line surrounded by people for a long time. My nerves were frayed further than I realized. After we had sat down and the show started my mind went haywire. I tensed up and couldn't speak, my mind was running at warp speed, I couldnt communicate, and tears welled up in my eyes.
I was sitting between E and my best friend, and couldn't even tell them. I couldn't do anything, it was just all stuck in my head swirling around.
It calmed down eventually and I texted E, trying to be quiet. We had a conversation over text, then I passed my phone to my best friend and let him read what had happened. I was too fried to actually talk and the show was going on in front of us. They managed to help me a little bit and they offered to leave and take me somewhere quieter. I opted to stay because I didnt want them missing out on anything with their school and I didnt really want to acknowledge that I wasn't okay.

I am getting very tired of anxiety or panic or brain fog disrupting my ability to be around other people and enjoy life. I dont understand why I can't just talk to my friends around me. I dont get why I can type out emails and texts when Im alone and be fairly cognizant, but when im in a crowd my mind turns to scrambled eggs. I dont want this to continue. It has been going on almost two years now.
I want to be able to feel excitement again and enjoy life. I feel like everything do is just a short trip away from the bed, with the bed being the most enjoyable place I have. I like being out with my friends and doing activities, but its become harder to do that. This is normal for the wintertime.
I hate this trapped feeling. I want to get out and go on adventure, I dont want to spend my life doing what im doing. Its getting old and I want a change. Im praying the change is sooner rather than later.
I know right now part of the problem is that I am tired and sleep deprived, but I never recover when I do sleep so it almost doesn't feel like it even matters.

UGH. I had done well for a while, I had some strength last summer. I was still an emotional mess but I had more strength. I told myself I could go longer without seeing my doctor. I think that may have been a bit too optimistic. I think my protocol at current is helping prevent too much of a backslide but I dont think im gaining progress.

In other news I should be starting the hyperbaric oxygen soon, which was recommended by my new psychiatrist I saw last month. She believed that it would make a big difference. I sure hope she's right.
Everyday in an oxygen chamber, thats dedication I tell you!

What Will 2019 Behold?

In A Search
I often lay awake at night dreaming of the future. I am constantly searching for something, I feel like I am working hard with minimal satisfaction. I cannot find what I am looking for. I love other people and spending time with other people when I feel well. I love helping other people, that cn bring me satisfaction but even in the end I ask myself, was I missing something? What could I have done better?

I spend 98% of my life thinking. Work, school, and friends are the primary things on my mind. I love my job and the people I work with. I love how I can be involved in these peoples lives and I learn so much. But sometimes I ask myself, am I missing out on something because I have become too comfortable?
School. I constantly dream about what going to another school farther away from home would be like. All the time. I hear people talk about how their time in college was the best part of their life and they made great relationships and learned so much by living on campus, all these great things that I am looking for
And I wonder, where should I be searching? What should I be doing? I ask God almost daily-what next? Am I doing what I need to do or am I becoming stagnant?
In the moment I usually feel stagnant, looking back usually leads me to see what the positive in the stagnancy can be.

Lyme has created so much indecision in my life because I cannot gauge if I will be able to do what I need or not. Im doing well in my current schooling and work but towards the end of the semester I am worn out. Its hard. I have to really push myself to do as well as I do in my schooling. I am doing alright in work but I am not exactly excelling like I want, there some further courses I could take and move up in position but I cannot bring myself to do it. I just can't and I dont know why.
Its a very delicate balance to maintain what I do and I KNOW if I do that 1 extra little thing that was just too much for my body to handle. My body tells me about it, sometimes for days.
I want to branch out. I feel like I need to branch out. I want new experiences in my life.
But when I crash its always hard. When I crash I usually regret everything and I feel as if I am being suffocated by stress. I want to do SO much. I push myself to do a lot, I hate being bored. But sometimes my body can't take it and I am afraid to play around with changing schools for fear of failing.
Its one thing to fail at work for a few days. They know me and they know if im not doing well, its ok, I will be back to normal soon. School isn't so forgiving. Either you pass or you dont. Theres no leeway.
And I just can't bring myself to take myself away from a place where I am (slowly) succeeding.

Tonight I did apply to a new school. I am waiting to see what happens with the application. The school is a bit on the exclusive side and at this point I would be a transfer not a new student, I do not know how great the odds are in my favor. This school is smaller and it is a Christian environment and I feel like I have potential for success here. I do not know that. I could be entirely wrong. I dont know but I felt pushed enough to apply. Cant hurt.

I visited a college a few months back. I had been accepted and I could have chosen to go this January. I could be preparing to move right this minute and start a new life. I just couldn't do it, I didnt like the school. I didnt meet anyone I clicked with and I wasn't really impressed with much. The school was very very nice and clean. The food options were also plentiful which is good for someone like me..but I just..didnt feel led. I didnt see, hear, or experience anything that made me say THIS IS IT. No.
And it frustrates me because I do not know where to search. I pray often but usually it ends in my mind just spinning in circles on what I want to be doing or what I would like to feel like. My dream isn't to stay up late every night writing down my frustration because I can't sleep. I want to feel like I am progressing and excelling, and I just dont get that feeling....

Earlier this week I felt so rough...I just stayed in bed all day. I got up to take the dog out and make a sandwich, that was it for the whole day. I felt so lazy, even though I had things I could do but I was just too worn out. Its been a long time since I have felt that bad, where I just couldn't get up and do anything.
This happens during the winter. Its cold, raining, and dark. How can anyone be motivated in this?? Surely there is a way to work around this and we just haven't figured it out yet. I dont know, these are just the thoughts that keep me up at night.

Emotional Floods

Long Week
I love the holidays and I love getting to see everyone at Christmas, friends come home from school and I get to see some family.
Always great.
Except when Im worn out. Which happens. A lot. On top of being worn out, I have managed to have the sniffles and a sore throat all week. Which further depletes my limited energy.
When im worn out I loose all hope of enjoying whatever it was that I had planned. I get caught up in my head and I drown in my thoughts. My thoughts just spin like a whirlpool. That usually ends in my emotions getting the best of me and me spending my night with some tears on my pillow.
Tonight has been one of those nights.
Last night my best friend spent the night with me and it was SO SO nice having him back. I didnt have to sleep alone and I had someone fun around to keep my spirits up. I didnt feel so lonely even though I was terribly drained and didnt feel like doing anything but laying down. He helped me with my car, having him help was amazing. We did in a few hours what would take me at least a week to do. One stress off my plate and it was fun having an assistant.

But in the end I was an emotional mess. When it was closer for him to leave I started crying and pouring out emotions. He was there for me the best he could, part of it was that I missed him and part of it was I was disappointed that we didnt do more fun things because I felt crumby (to say it mildly). I love it when he spends the night and we stay up half the night watching movies and playing games, this visit was a bit more on the mild side and I was spacey for most of it.
After he left I walked back into the house and cried again. It was just too many emotions for my tired body.
Christmas and christmas eve were similar. Had lots of fun doing things with friends and family but at the same time I wanted to be at home in bed crying. I wanted to be enjoying the traditional games at my friends house, but I just couldn't get into it.
Then I get upset for not being able to enjoy things. I want too so bad. Its just so frustrating that I always feel like Im looking through a snow globe at the outside world. I want to jump in and join and be a part of the fun and games.
Not sit on the sidelines staring off into space.

E has been great talking to this week. He called me the evening of Christmas day and we talked for over two hours. Because I was laying in my bed, in my quiet safe place, it was easy. I didnt enjoy it like a normal person would but its okay because he has the same feelings I do. The things he enjoys, really isn't the same. Things are more...pleasant or nice...not exciting or joyful, sometimes its better to be doing an activity than twiddling our thumbs in the corner, even if we dont really feel the effects of it.
When im in my safe place like that though, I feel more at ease and its easier to get enjoyment out of things.

Im planning on going to church tomorrow, ive gotten really really bad at actually going to church anymore. Its a push to even do that. My best friend will be there, and another good friend whom I love needs a ride to church so I am picking him up beforehand , its good for me. I just wish I had the energy and stamina to enjoy it. and the brain to remember whatever the pastor speaks on.

It amazes me how one week I can be doing 85-95% normal and the next week feel like im dying. I wish some of these new supplements would kick in a little more. but the dr told me it could take 6 weeks or so...(i think. idk i can't remember)

Guest Post from E- It Took Everything from Me

It took everything from me

“What is happening to me?” I wondered, as I stood in the shower. 
I was cold, quite dizzy and generally didn’t feel good. After a day at work, the hot shower warmed me up nicely. 
I drove to my church, where I was scheduled to spend the evening. I didn’t feel like eating anything, so I just got some tea. As the evening progressed, I felt worse and worse, and got so cold that I was shaking and shivering....with a coat on.

Finally, I had enough and went outside to my car, turned the heater on high and cried myself to sleep. Eventually a friend came out and found me, and drove me home.
This was the first time anything like that had happened to me, and I really didn’t know what to think of it. Over the next few months, I began to get more and more tired, until the point that I am now continually exhausted, and sometimes can only collapse in bed. I have agonizing pain, and have developed an intermittent stu-stutter, along with other cognitive difficulties. Conversations in groups have become increasingly difficult, and any productive school work at times seems nearly impossible. I have started falling regularly, and I am at times unable to control my balance well.

Though I never had many friendships before, the ones I did have seemed to die as I have become unable to do the things I used to do. But none of these are as bad as the ever present, crushing depression. I wake up every day, cussing that I woke up and that it is once again time to try to get up and move. I feel like I have been hit by a freight train.

A few years after I first got sick, I was diagnosed with Master’s (essentially lyme) disease. That at least explains what has been going on. But knowing hasn’t made things easier in general. When I, in passing conversation, mention to someone that I have Lyme disease, the general response is “okay.” There’s no concern on their face, no understanding in their mind, and no care in their soul. People, in general, just don’t care. However there are a few people that care about me, and for those I am incredibly grateful; it means more to me than they know.

This disease has taken everything from me. It took all of my energy. It took my ability to even have enjoyment. It took my emotions. It took my memory and my capability to think clearly. It even took my ability to have moving prayer time or serious devotions. It took me....and left me for dead, as a skeleton of my former self. A self that my friends, family and acquaintances don’t know, a self that I don’t know; a self that almost no-one knows. It took my youthful inspiration and replaced it with a wish for the sweet release of death every single day.

Even with the impressive amount that the bacteria has been able to accomplish, it hasn’t taken God from me, or me from Him. Nothing can separate those in Christ from his love for us. And I know that, and I firmly believe that. Nothing has escaped His attention, and I know that this immense suffering is for my good. It is helping me become the man God wants me to be; it may feel most of the time like a dagger in my heart, but I know that when I get better, if I get better, I’m going to be unstoppable. I’m going to be infinitely more compassionate towards those with depression, mental and physical disabilities, the hurting, the outcast, the unwanted and the untouchables of society. I’ll have a much greater understanding of what these people go through, and perhaps be able to help them. And for that I’m thankful.

-E

I asked E to write a post about his story for me to share on my blog, and I am impressed at how well he captured what he is going through. His brain fog and focus issues are a fair bit worse than mine (or so I think), and mine are fairly severe. For him to write this much and do such a coherent and clear job at writing, im super proud. 
One of the things he asked me after we began talking was "how do you describe what lyme has done to you"
I responded back with " I feel like I was murdered, then I never left my body."
Its fairly safe to say we both feel very dark now, which I for sure never felt like before lyme. Its hard to fight the crushing depression that has come on with lyme, the lyme takes over the body and the depression on top of it helps take over the brain and its thoughts. Together the two of us have more support to encourage the other through the dark times, which are more often than either of us would like to admit to anyone else.
Im sure that this will not be the last post from my friend that you will see posted on this blog, as he progresses with his treatment and his life and symptoms change im sure Ill be able to convince him to write a little more to share!
He started zithromax today, so I have a feeling he's not going to be feeling to great over the next few days.