Saturday, March 24, 2018

Rough and Shaky

Pull it Together
Another rough day today. I think I wanted to jump right out of my skin, just right on out of it. I slept in late on purpose to get as much rest as possible. I woke up the same as I went to bed last night. I didn’t want to deal with it, I hate feeling sad and lonely. Once I got moving for real this morning I went straight to doing homework, I had to do something to keep my brain distracted. It took a while before I could muster up the real energy I needed to get moving and get out of bed for more than a few minutes. Once the homework was out of the way I still had to keep moving for survival. So I took my Volvo on an adventure. I got my haircut, had the emissions checked (PASSED!), and then we returned home.
The whole rest of the afternoon consisted of me taking apart the Volvo and working on some things. I didn’t have the energy to be outside all day but I made it happen. I tried to stopping and coming inside but I was only inside a few minutes before I realized I couldn’t stop. I needed to have something to distract my mind and keep my hands working. In other words I needed to burn every bit of energy in my system so my brain had no more to run wild with. Working on the car works for me right now because I can physically do the work it needs but it requires a little concentration and brain power which keeps me in a slightly better place than I would be otherwise. Hey it even gets me outside too, during the winter time I am an inside being. I don’t do the cold. Not at all. So for now this system works,

I had some friends over this evening, also to keep me distracted after dark when I could no longer burn energy with the car(it’s really not that broken). We played clue. I don’t play board games often, turns out those require focus and brain power with a side of memory. Dang, fresh out of those.
I am probably one of the worst people to play with, or at least in this current state. In Clue you have to remember the other players characters names....yea I can’t do that. Mr green, Sargent plum, orchids, I don’t know but every time I had to take my turn and pretend I knew what was happening I would look at the friend I wanted to accuse and say-so who are you?
It really was fun to play, but it made me feel lost and stupid. I accomplished my goal of not being alone and socializing while also keeping my brain distracted. I enjoyed it. I promise. I think..I don’t remember much of what happened, I was a space cadet. Lost in space searching my brain for a place not infected with cobwebs.
While everyone else was playing the game or talking I was trying to figure it who was who.

Eventually the games ended and we only had one other person here. It was nice, I was tired but I had someone to socialize with for a little bit until I was ready to check in for the night.
None of my close friends came, it was more so my sisters crowd. Nothing wrong with that but when all my friends had something else to do it made me self conscious a bit. I have the paranoia of why can’t I be the one they are busy with? Why am I always the one searching out for one of my friends, never the one that gets chosen. In other words, I’m the first to be needed if someone wants something but last to be picked for a get together. I may even be wrong and I can’t see it, I know I’m paranoid. These are some of the thoughts that haunt me.

Last week my doctor told me I was one of his difficult cases. At the clinic I see people with canes, walkers, and wheelchairs-those are supposed to be the difficult ones. I can walk, I work part time, school full time, have a social life, and have two semi demanding hobbies. I am not perfect and awesome at all of these things, my energy does waver and my progress with these things can suffer. But I don’t consider myself one of the more difficult ones. It was just a tad unsettling, I’ve been in treatment for years and I can see how some people are way better than I am at this point. My symptoms are just very clingy, I have never had a perfect 0 on the pain scale of a perfect 10 on the energy scale, it just doesn’t happen for me. I just suck at sitting down and not being productive, I have to keep swimming or I feel useless.
I am hoping that this last visit to the clinic will be a big turnaround. It always takes me a few days to recover from traveling home from the clinic and starting the new remedies. I know I am in the beginning of the detox period where I’ll feel funky for a while then one day I’ll wake up and feel like a cloud was lifted. I just have to wait for that day.

I know I am making progress. I see it in my bloodwork and in my skin even. I’ve been told I look better than I used to.
Before started at the clinic two years ago my skin had started taking on a pale purple complexion. Those days are gone. My face looks human again, some days I don’t even have big purple circle under my eyes. I know these all mean positive things and my face does usually reflect how I feel. Unfortunately very few people actually pay much attention to how I look. People notice that I didn’t brush my hair but rarely does anyone notice I’m pale or zoned out. Funny how that is....vanity is obvious but whose going to notice if I’m present in the moment.

I have officially rambled for a whole post. I think I’ve been typing for 45 minutes now....I don’t even remember what I started this post off with. Another goal accomplished, I think I have finally burned my energy candle for the day and I can go to sleep
*sigh*

Friday, March 23, 2018

I Miss My Old Lyme-Wait What?

Tonight the stress of this whole week has finally caught up to me. I miss the beginning of the week when I had some energy and brain power. I miss sleeping beside my best friend and having a companion. I miss having new test results to cheer me up about my future. I miss the peace I had.
I am back home from Kansas, we flew back home this afternoon. Flying always makes me tired no matter how long or short it is. I kept myself well entertained on the plane with Amazon Instant video, I think I have watched every episode of Top Gear UK ever at this point.
I held up fairly well but now that I am home and done for the day I am fried and emotional. I don't want to be alone. I am tired. I need to eat but I can't which means I can't take one of my new supplements, I don't want to skip doses so soon on a new protocol.  just can't do it tonight though. I am too tired to do anymore.

Whats ridiculous is that I am always too tired to do what I want to do but I am never so tired that my brain cannot run wild. I have never been so tired that my brain would stop being paranoid, stressed, or alone feeling. I spent days this week with my best friend, the only time he was more than 5 feet away from me this week was when I was in massage. He was beside me through everything else, my dr knows him now and knows how important having him there with me was. In my life right now, going to the clinic and meeting my doctor is about as personal as you could get with me. 
Having my best friend there kept me sane. I never went stir crazy in the hotel room or felt alone or trapped. We kept ourselves fairly entertained with netflix and movies. 
We even went to the junkyard on tuesday and found parts for my Volvo. I wouldn't have done that without him being there. PS if you own an old Volvo parts for them are few and far between. This was the only junkyard out of the 9 i called that had one car with two parts on it I could use.
In the evenings we would go to Happy hour in the hotel lobby to get out of the room and be around other people. He would get a soda and I would ask for a soda still in the can, then I would keep it so my friend could drink it later. 
We kept from getting bored while just sitting around for most of the day. We even explored Target for a little bit once. 
This made all of the difference in the world for me, I really needed a friend with me. The last few visits to the clinic I have gone stir crazy from sitting around the hotel room but having no energy to do anything. I was relaxed this week. All was well in my world.
When my friend left yesterday morning and I was back to the usual routine, the stir crazy came back. During the evening I was alone in the room for about an hour. I packed, cleaned the kitchen, and paced the room because I just could not just sit down with my thoughts for another second. I finally gave up and found something to watch that worked good enough as a distraction. But it was hard. 
This morning I had to keep moving because of the tight schedule of checking out of the hotel, going to the clinic, then catching an airplane, so I have not had time to think until now.

Until last year when I broke I never needed constant support. I never needed my hand held. I was strong. I was lyme strong. I had lived through burning and searing pain, nightmares, days without sleep, days without friends, nausea, I fought it and I would win. 
Now I never want to be alone, I can feel alone in a crowded room, I want someone to hold my hand and walk with me through this. I do not connect with just anyone, theres very very few people I feel all that close to or I trust. 
I miss how I used to be sick. I would be tired but calm, so no matter how horrible I felt I could just stay in bed watching tv. I could go get an IV and life would somewhat improve for at least a short time( i just had to make it through the die off period). In the hotel at the clinic I used to be okay with just loafing with the tv remote because I did not feel like doing anything. 
I would find something to do, text, read, blog. It was all good. I didn't necessarily enjoy how I felt or anything like that but I could make life happen with how I was then.
I can't always make life happen that easily when my brain goes out. The last month I have lived through pretty well. I mean school is going well, I bought a project car to fix up myself and sell(previously mentioned Volvo), sleeping hasn't been the hardest thing ever, paranoia has been on the low. 
I have had a few not so good moments where I over did it. One afternoon when I was home alone, I walked down to the kitchen to get a snack. Somewhere between getting food from the cabinet and walking to the counter I lost it. I cried and tears were rolling down my face, I was upset and angry, I felt alone and wanted help, it all came out of nowhere. I just fell apart in the middle of the afternoon on a regular day in the kitchen. That was a hard day. Since then I haven't had any major breakdowns until this evening.

Reading and blogging is not easy anymore. I have more thoughts to share than ever but I can't get them out because I am stuck in my own head. I have more energy to do physical things but I am still scatterbrained sometimes. I still slur things when I speak, sometimes I jumble a whole sentence into one messed up word. I don't like not being myself completely. Life has gotten a lot better but not yet normal...or at least a predictable equilibrium.

I still need someone to help me through this. Unfortunately everyone I know has their own life to live which often does not include me, so I find myself alone with my thoughts. Or alone with my Volvo, I had no idea a 1999 station wagon was capable of being such a good companion. 
I keep praying that I am nearing the end of the lonely journey. It has gone on so long and just seems never ending. 

Day 5 of Treatment 2018

Hi all, I hope you are all having a good symptom free week!

Today was my last day in Wichita at the clinic, I am all the way back home in my own bed now-very tired.
The doctors visit went well, not terribly exciting. The doc worked on my spine, neck, and muscles doing regular chiropractic work. I am prone to all sorts of spinal stuff because of my scoliosis, my KS  doc does a much better job at adjusting my back and making it last than any other chiropractor I've been to.
I was not given anymore supplements to take home on todays visit, praise the Lord. The doc did some testing on my thyroid and hormones but it all tested well. He gave me a few one time dose homeopathics to take in his office, but thats it.
In other words, today I checked out well and there was not a whole lot for me to have done. Loose ends are being tied up.

This was a great week. My doctor has me on a bunch of new supplements I have never tried before so I am very excited to see what kind of progress is made in the next few months.
My gut has been totally screwed up since March of last year. Whatever happened last March when I got sick during treatment has really stuck around in my body and hasn't let go. Anyone who has been following me this last year knows that the last several months have been the worst, maybe ever for me.
When everything went south last year my gut became problematic and my digestion was lacking. I was ready to just quit eating altogether at one point. It just hurt. I lost my mind for a while, it felt like decades. In reality I don't know when it started or when it ended, I just know that most of the time I am better now and I never get to the extremes I used to hit. Pain came back along with dizziness and extreme fatigue.
The last three visits to the clinic have mainly been to get my body floating in the right direction again. Each time brought more progress. This last week I think may have finally tied up the loose ends. My doctor found a lot with my gut and brain individually and my gut and brain together. Never had these kind of findings show up on the test before, so I think we may have finally dug through enough layers to reach some of the roots of why an atom bomb went off inside me and broke me in to a billion tiny pieces.
I am on new supplements that I have never tried, mostly for either detox in general or killing bad gut flora. My doctor said it could take a while for my gut to shift, as long as I don't get extremely worse I don't care how long it takes as long as I am moving in the right direction.

Thursday, March 22, 2018

Fourth Day 2018

Today was my second to last day of treatment for this round. The doctor worked on me a fair bit this afternoon. He focused on brain things mainly, he also found a gut bacteria issue causing my brain to be affected. He said my gut issues could be causing a lot of the psychological issues I have, so I have strong hope that the new remedies to fix this will work quickly.
He also found more of those good old heavy metals that my body seems to accumulate along with halogens. So we will be continuing metal detox once again. Each visit this seems to become less of a priority, I know it’s gettkng better. I just need to keep patient.
He took me of NAC and another metal detox supplement, so 2 things have been taken off my supplement list this go round. I was kinda hoping for some more supplements to be eliminated, maybe next time.


So far I think this has been a productive trip. I have several new gut and brain supplements which I have never tried before. My appetite is usually very lacking and eating a significant amount leads to my stomach aching. These new enzymes and herbs should begin to turn that around.

Wednesday, March 21, 2018

2 and 3

Day 2 went well. My tests showed good results and I probably won’t need my CRT repeated for another year(instead of 1 every visit). My doctor is pleased with my progress, he wants to focus on my sleep and my gut. So yesteday we worked more on my brain with some neurotransmitters. He is giving me two supplements to help balance out some of my brain chemicals. He also gave me something for autoimmune things I have. I have noticed my last few visits have been targeted around autoimmune more than ever before, I hope this is the final straw as to why I’m still not feeling well. 

Today was similar, we worked on some autoimmune issues, some chiropractic and muscular work, and another supplement called Limbrokinase for a few different purposes. 
The good news is my doctor is finding less and less wrong with me, today we finished early. This gives me some hope that things are progressing quickly. 

Tuesday, March 20, 2018

Hansa 2018

Good things happened on my first day!
My doctor ran through my blood work, fairly impressed. My cholesterol is still not doing what it is supposed to do but other than that he said I get a good report. 
On his other testing he checked out my stomach, he found an overgrowth of E.Coli and salmonella, our guess is this could be the reason I never feel like eating. He gave me a remedy to kill the bad bacteria, digestive enzymes, and an oral glutathione to take. I am hoping that this week will get my stomach back to working again so I can eat. I feel like I am always starving even when I’m “full”. I know I don’t eat enough, I counted my calories the other day for 3 days. I managed around 1,000 calories a day. Which is less than half what I need to be doing. 

If we can get my stomach working this week and help my sleep out, I won’t be in to bad of shape when I leave here. 
Honestly since my IV last month I have been holding fairly well. Even my brain power has been good enough, still needs improvement by a long shot but I am functioning well with what I have. I have had joint pain and other pain things coming and going plus exercise still is a no good. But hey as long as I have a little energy, a little brain power, and a lot of support from my best friend I can make do just fine! 
School has been going fairly well also, I’ve struggled a bit but if I’m fully honest here there’s plenty of non sick people who work harder in class than myself but have lower grades. I may not be doing as perfectionistic as I would prefer in my school work but I can’t say I am grasping for straws(but the semester isn’t over yet and I still have papers to write!). 

I have not yet seen the doctor today but it won’t be much longer before more progress is made today.

The Story for Grandma

Well you guys I have a whole lot to update, there has been a whole lot of ups and downs this last month or two but right now we are doing well.
In the middle of February I went to my old DO and she gave me some infusions of vitamin C, glutathione, Mag, and B complex. This dramatically helped me improve very quickly. Three days after the IV my heart racing and palpitations had calmed down and a few days later my heart was back to normal.
My mood and brain issues stabilized, my sudden fear and brain rachetness calmed down. I can now handle stress again with a much more reasonable attitude. Energy returned also, not perfect but plenty good enough for me to function in daily life.

On to the current news...
I’m back in Kansas, I saw the doc this morning.
Getting here to Kansas was probably the worst trip ever, last March when I was here we had to drive through a tornado and hail storm....this time was much more stressful.
The good news, my best friend came with me this trip so I have my mom and best friend here.
The hard part-the Atlanta airport.
All three of us fly standbye, so we take what seats are given to us. This also includes TSA precheck, sometimes we get it and sometimes we don’t. Well mom and I got precheck so we went through the short(ish) security line. My best friend however did not. His line took over 45 minutes to get through, when he reached the end of the line to actually go through security the agent looked at him and said no, you stand there until I tell you to go through. He had asked if it was possible for him to get through quickly because his plane was about to leave, oftentimes they’ll push the ones in a hurry through. Not this one, she held him back until she decided he could go. When he was finally released he ran through the airport to the gate...and missed it by 30 seconds. The captain of the plane decides to shut the door ten minutes early....
Another pilot walked up to the gate just behind my friend, he had called the gate ahead of time to make sure they would hold the door for him so he could take the jump seat. Nope, they closed it on him too. Then another 4 paying passengers walk up and realize what has happened. Needless to say, the gate agent went back down the jetway and hid from all the angry people at her desk.
We even said something to the flight attendant to hold the door because my friend was at the gate and more had walked up. My dad is an airline captain, I know what they are allowed to do. Nope. Mr captain man decided he had better things to do.

While all this was going on at the aiport, Mom and I had made it to Kansas. We go to our hotel expecting them to have our room which we book every single time. Nope...they had no room. We wait a little bit and the manager sends us to a new room, I walk in and the counter is covered in trash and none of the beds have sheets. I head on back to the lobby and we tell the manager the issue and he calls me a liar! I was like would you like to go see it yourself??
After that he finds us yet another room, this time he inspects it himself first before sending us to it. This is when things started turning around.
About the time he found us the good room my friend calls me from the airport, he’s boarding the plane and will be in Kansas before long. Huge huge relief that was, not to mention I was super excited!
Needless to say, that was an interesting day. While I was sitting around during all of this my grandmother texts me to make sure we made it to Kansas and the hotel, all I say to her is...man do I have a story for you!