My Own Little Corner

This weekend has been rocky and it isn't even over yet. My brain has been scrambled eggs. I spent last night feeling OCD and depressed. I cried in the shower because I didn't know what else to do. I still don't know what to do. My brain wants to keep upsetting thoughts in circulation and important thoughts forgotten. The sadness and loneliness was unbearable.
I started the intake process with the school councilor last week. I go back this week for something, I think i get placed with a councilor. Im not entirely sure how it works, I just know I have to go back.
Getting the process started was so uncomfortable to me, I had to explain to the intake councilor about lyme disease and why it causes me such hassles. I used to not mind sharing my story but with how I feel these days I feel like so...sick of sharing. It feels like my business, not someone elses. But I did it, nothing bad came of it. He didn't try to tell me anything about lyme, he did of course bring up the CD C and wondered why they didn't do anything about it. I didn't entirely appreciate how he asked me about it, im the patient not the doctor. Why on earth would I honestly care about the CDC, I have a long list of complaints about the CDC but lets be real, the CDC recognizes the Flu, HIV, Tuberculosis, and a ton of other diseases but can a person with HIV be cured? No. Would I ask a person with HIV about the CDC not being able to treat them? No, it probably get looked at like I had lost my marbles.
But its fine. Ive made it this far. I keep telling myself that its time to seek professional help, I have lost so much enjoyment in life that I know I would have if I could just think straight. At this point Ill even try anti depressants and/or anxiety medication, not long ago I would have said I would never take those meds unless it was an emergency. But its time. I think anxiety is part of the reason my eating has been so bizarre and why I never feel like eating. I think depression and OCD are why I can't enjoy anything and why I never feel like anything is good enough. Its gotta change.
Lately I have not been feeling that bad at all-if I discount my emotional turmoil. I have had some back pain, other than that I haven't been hurting much. Fatigue has been significant but because of the OCD and things I haven't been able to sleep...the last two nights, with the help of meds, I have been able to sleep deeper. Today I have for sure had more energy.
Heart and blood pressure symptoms have been an issue, they are probably the only ones I have that aren't related to anxiety or depression related. They could be indirectly though. I just know that if my mood was stabilized and normalized I would probably be feeling great right now, or even more often.
It is hard for me to go the councilor route though, I don't bond with just anyone, I don't feel comfortable speaking to just anyone, and my brain fog will keep me from being able to speak my thoughts clearly. I am going to try to push through it. Currently the only people who know I am trying to pursue this is you guys that have found this blog online, two friends, and my mom. Thats it, I don't think ill change that anytime soon either.

Last night something really triggered me. I was speaking to my best friend and he told me he probably won't be able to go with me to Kansas again this year. I am trying to go back to the clinic in either August or December, so theres time to plan out ahead. Or so i thought. I don't want to keep going through treatment alone like I am. I want and need a friend with me. It takes a lot out of me by sitting in a hotel room listening to the world around me go round while I watch some tv show that I don't enjoy. It makes me feel so small and worthless knowing my friends and family are at home living their life, making money at work, hanging out with other people, and all I can do is keep the hotel bed planted on the floor.
I hate it. It made me feel a billion times better having my best friend with me last visit. I wasn't uncomfortable and I didn't feel so alienated from the living world. I had a friend with me, someone there just for me to see that I was okay. I was much more stable and well feeling having him with me....
I don't want to go back to my doctor at all if its just going to be me staring down the four walls between clinic visits.
I don't even have the energy to go off and go walking or anything after seeing the doctor usually, otherwise I would try to find things to do but its just not that easy....

Its hard for me to find encouragement. Its hard for me to get out of my own head. Its hard for me to trust anyone. Its hard to feel the love from those around me. Its hard to enjoy anything. Day to day activities have just become a distraction between sleeping.

I sure hope that hamster is enjoying its vacation from the wheel....

Oh Where has my Hamster Gone?

Anyone seen my hamster running around? I think he jumped off the wheel and just wandered away. Long vacation perhaps?
Anyway, brain fog has been present lately but not the worst it has been. Sudden sadness that comes spontaneously has also been showing itself  whole lot more than I appreciate.
It can happen at work, school, home, or with friends. It doesn't matter to my brain what I am doing or who I am with.

What causes this? ugh. I know, its one of those things that just is what it is for the time being. It is just so difficult to deal with life when sadness creeps up on me making me feel like crying and hiding. It makes me paranoid of the people around me, friends or not. The paranoia that everyone around me dislikes me or pretends to tolerate me just to be nice, is a rather taxing emotion. I like to tell myself it is just paranoia, but sometimes I don't know.

Work has risen back onto the stress spectrum once again. Every time I think something in my life is returning to normal-boom-wrong I am. I have found myself sticking up for another coworker who is, in my opinion, not entirely being treated as she should. Due to the paranoia, I can't tell if I am right or not. On top of that I find myself doing other peoples work so things don't get piled up. Whats worse, the slackers in the office are family members to the bosses. Naturally.
It will be a temporary issue, either someone sets them straight or I hand in my two weeks notice and walk on out the door. Its the stress factor that bothers me and causes me issues, not the work itself. I have not had to do any ridiculous amount of work to pickup for the slackers. I have however found myself annoyed by their corner cutting. but because its their family....its a waste trying to get the laziness resolved.

Needless to say, I find myself uncomfortable at work when it used to be my second home. For me its a big deal to be uncomfortable, I feel shut down and my brain just doesn't function a whole lot. With all the issues going on in my head and body...I have to have that connection where I am.
Often times at work or school I feel like its just me, other people are around but almost in another dimension. I just float through it all until I find myself back at home, alone in my bed.

I wish I never needed or wanted to leave my room. Even being around the people I love I just don't feel the bond I used to have, why? I used to love work, I loved doing well in school, and I loved going out with my friends. That was kinda my life for a long time but now, where did it go?

Ughh.
My heart rate is beginning to rise again. I can feel it. My fingers feel swollen sometimes especially in the tips. And my fitbit says my average heart rate is higher than it was last week.
This hasn't even been a stressful week! I have felt fairly well. Only a few sad teary moments. I have actually had a fair bit of energy to play around with and on top of that, minimal pain. Thats huge for me to have energy.
Hm. One day this will all be resolved and my body will function well enough for me to be a so called normal human.
Anyway, for now-

Dear Mr.Hamster,
If you get this post could you come home? I miss you making all the gears in my brain turn. I need that in my life.
Love, your old hamster wheel.

A Search for Prayer and Response

Hello all, I have yet another roller coaster post of the ups and downs as of late.

Today(technically yesterday the 28th) marks the 10nth anniversary of my best friends moms death from stage four breast cancer, which metastasized to her liver, and bones.
My friend invited me over for dinner tonight to be with his family, we had a nice time of remembrance and fellowship. You see, I did not know my friend during the time of his moms illness, so it was a bit shocking and different for me to be there for this time. Honored to say the least.

At the dinner table his second mom mentioned that she's been watching the celebration of life video, which I have never heard mentioned before. So when I got home this evening, I searched for it and found it. Then I searched the internet for the Obit, which I also found. In the Obit I found a link to a blog, written by my friends mom during her treatment. I never knew it existed. As of yet, no one else knows I have found it, I don't know if I was supposed to find it or not seeing as I have never been told about it. Maybe it was just old news and it never crossed my friends mind because it was ten years ago...
Ive read several pages of the blog thus far, learning tons of information I never knew. It is also very encouraging, even though I know how the blog will end... there are all kinds of positives laced in the posts. Positives that I can understand as a sick person, such as getting better results on blood tests-some of which were barely short of a miracle. One that stands out to me was upon diagnoses her blood test for tumor markers was just short of 3,000 points. after weeks of treatment it was down in the low triple digits, and did drop into normal range. Her liver went from a major issue, blood was going in the reverse direction in the main artery-to normal and functional. Completely healed with a minor side of scaring. I think all of us with a chronic illness pray for test improvements as quick and remarkable as this.

You see, over the last week or two I have been sad that I have never met this woman, so I have prayed a few times that I would get some kind of message from her. Nothing specific, this is actually unlike me...Its rather unusual to pray to God for information from someone who has passed. This blog written by his mom seems to be the answer for that, many of her posts hit home for me giving me a picture of what my friends life was like during this time period. They also shed a positive light on being sick, I mean she was told on day 1-go home and get your affairs in order you won't see Christmas. Hows that for bleak? How do you not become depressed from news such as that? You know what? She saw Christmas in good health, and then she saw it once more. Beat that depression.

I just cannot believe some of the things I have read, keep in mind these posts that I have read so far are 12 years old. Yet some things she said I feel almost like they spoke right too me. I wish I could have been there for my friend during this time, so so so badly. I can never change the fact that we weren't together then, but the writings of his mom make me feel like I was there, I feel more so like I knew her than never knowing her at all. Its not the same as being there, but just the fact that this was real, is much less foreign I guess you could say. She went through a lot and was put through a lot, but she held her faith like a rock. She lived a better quality of life than she was told, she lived much longer than she was told, and she had faith that no matter what the outcome was it would be okay. She knew there was a good chance was going to die sooner than the standard life span of a woman, but she made every bit of that time count. It wasn't wasted on feeling sad or the woe is me thoughts, thats the power of a woman who prays.

Now as I have said in the past depression has become one of my biggest enemies as of this year. I have never had to battle it significantly before. But now I battle depression, sadness, and feelings of total worthlessness daily. After my last visit to Kansas these issues have lessened, but this past week has been particularly rough. I have never stopped praying throughout this journey and I never intend too. Today was an answer to prayers, yet more proof I have no reason to stop praying.

There are many aspects about chronic illness that scare me. It is hard to believe I have been sick for almost seven years now. It is also hard to believe that I am just as afraid now as I was years ago, it seems there is almost always something around to give me a new reason to be afraid. Sometimes these reasons don't exist. Rooted in paranoia. Also a new symptom as of this year.

I often thank God for all of the wonderful people placed in my life, not everyone has this luxury. Some of these people are readers and commenters on this blog such as Rebecca Miller. She never fails to post something encouraging for me, until recently I never thought I needed that much encouragement. All of us who have been placed in a situation with chronic disease should be encouraging one another much more often than the current reality.

I would like to ask for some very specific prayer requests.
I would like for you all to pray that I can fully reconnect to reality, everything now feel dull and I feel distant even on a good day, that my depression will be banished-permanently. its hard to fight when you can't find a reason to, that my kidneys will begin to function normally, and that I will be able to eat and have an appetite like a normal teenage boy.

These are my current biggest roadblocks. I am already on a strong supplement protocol that is showing benefit but I honestly feel that these issues are more spiritual than chemical. I can't explain how, it just is what it is. I have full faith that I becoming sick was no accident and that many great things will come from it. But I do fear what my quality of life and residual damage will be like when my fight with disease is over, what will be permanently gone and what will be recovered.

In honor of my friends mom
Because of my depression, I have learned to appreciate the moments in life that are truly and timelessly special. The one of a kind, never to be repeated again moments.

When Time Stops

 I am back at the clinic for part of this week and I had a realization today. I was laying on the couch in the hotel room, thinking about all the homework I needed to get done and also how alone I have been feeling.
The TV was going but I was hardly watching it, I was so tired for most of this afternoon that I have been lost in space. Whenever I get like this I tend to just flip through my phone, flipping from one page to another. Opening an app then closing it, until I decide I need to do something better with my time. I realized that time had stopped, minutes felt like hours, I wasn't talking to anyone, TV was just noise, I didn't want to read, I couldn't do anything. I was so tired and foggy I couldn't make myself do any of my normal activities.
On top of that I realized I wasn't talking to anyone because time has not stopped for my friend, they are all either in school or at work. They don"t have the time to talk to me right now, too much life in the way. I haven't heard from my best friend since 6:30am yesterday, he hasn't seen any of my messages about whats going on with me here at the clinic, School and work dictate otherwise. Its sad for me, because he's one of the very few people I feel like I actually connect with, but he isn't sick-his life cant just stop because of me. Same with the rest of my friends and family.

Add that to the list of chronic disease symptoms that others just do not understand, being alone because the disease even infects our time. Our day, Our week, Our year.

I would so much rather have been at work today, joking around with my co workers and working on a new project I have been assigned to overhead. It would be easier to do my homework at home, in my own bed or on my own couch. The hotel room is nice and plenty comfortable, but it ain't home. You cannot beat being at home when you don't feel well. All other environments feel so cold and absent when the world is crashing down around you, only the chronically ill will understand what I just said. Its just not an option right now, I cant be home and honestly I don't feel well enough to be at home. Coming to see my doctor is what I have to do right now.

Today, after a whole morning and afternoon of trying to muster the energy and motivation, I finished reading my history book for class. Next I have to write a paper on it, but lets not think about that right now.
My doctor visits have been going very well, I can see progress in my future. I do have a little bit of peace, but too much brain fog to let me hold onto it.