February 22, 2017 I never realized I favored sleeping on my right side until I was told I could no longer sleep on it.

I never realized I would never be able to enjoy exercising again, until I was told I can’t and may never again be allowed to.

I never realized how embarrassing it is to forget words, to slur or forget completely what I was saying until it became a daily struggle.

I never thought much on going out, being social, being able to have infinite energy, until my energy and strength was taken from me.

I never realized how hard walking can be until I could barely walk without a cane and without constant breaks because I’m so winded and gasping for breath.

I never realized diet would play such a massive part of my life when I’m only 26, and I never missed the feeling of food until I became limited to about….perhaps 10-25 foods? Not sure the count, it’s low as fuck

I never imagined it taking nearly 5 months for someone to actually look at me and not say, “oh you’re stressed.” Hippocratic oath my fucking ass.

I never imagined being 26 and having difficulty sexually because my body aches or doesn’t respond the way I wanted.

I never imagined I would be 26 and administering medications through an PICC line for at least 6 months.

I never imagined having this amount of medications to take.

I never even knew much about chronic illness before all this began. I never knew on a good day, my pain level is a 5 or 6. And unless I’m on actual prescription pain meds (the big old knock you out kind) that I would ALWAYS have pain.

I never imagined hearing that I have to two co infections that could kill me. My entire body felt like it was dying and no one was listening. It was all, oh I see you take antidepressants. I see you take anxiety meds. Must be stress. You’ll be fine. BUT I WAS DYING.

I never imagined fighting for my life at 26. I never , once in my life, thought I would contract something that has no cure.

There is no cure. They use the word “remission.” Yes. Like cancer. They say with aggressive treatment they “hope to achieve quality of life once again.” Chronic Lyme disease patients are polled to have the poorest quality of life and highest numbers in suicide compared to all other chronic diseases. The little research they DO have, is limited on Lyme Disease. And I am one. I am someone who suffers from it. NIH wants to study me and I’m going to submit my info. Because this disease kills, debilitates, and ruins your quality of life. All you do is learn to manage the symptoms.

I want a cure, and I plan to do whatever it takes to be a part of making that happens. I am still fighting to rid my body of the infection. The journey has only begun.

February 8, 2017 I know I’ve spoken here and there on what’s going on but here is a list of what EXACTLY chronic lyme has done to me so far :

The biggest ones: brain lesions. The fibromyalgia. The sciatica pain. Now the more specifics….Fluctuating blood pressure and heart rate, palpitations, hot flashes, thrush, weakened immune system, joint pain, pain and burning in hands, numbness on my entire left side to the point I now am using a cane to help because it’s like a damn block now. Back pain, stiff neck, blurred vision, “brain fog”, gastrointestinal problems. I’m either constipated or I’m having diarrhea, lovely photograph right there I know. I have daily migraines and vertigo and photophobia (light sensitivity) and also tinnitus (ringing in the ears). I’ve also had an odd fluctuation in lab works, the awesome thing about the hospital I go to, the MyChart actually has a graph where you can select certain things (example blood pressure, or specific lab results) and see if there is an increase or decrease and when and how much, it’s awesome. I cannot lift my son, if I didn’t have Aaron here with me, I would probably be sleeping all day, I can’t even imagine working nor would I be able to. If I’m lucky I get an hour of somewhat relief a day. I have trouble sleeping and when I do sleep I toss and turn, but I can never sleep in till 6, and then I’m terribly exhausted all day. I have irregularities in my cycle, and I have severe groin pain.

I’m pretty sure there’s a ton more I could list, but I’m blanking now. It is not fun. It is downright miserable, I absolutely hate it. I am praying hard that this treatment will get me back to feeling like a human again. I just want to not feel all this pain. I want to be able to walk 4 blocks without my leg hurting like crazy, without breathing hard, without becoming dizzy. I want to drive normally again. I want to work, I want to work out, I want to go back to hiking (well….i dunno about that, now I’m scared to go to anywhere ticks are!) I wanna go out and not feel 90 years old. I REALLY hope this treatment can make my quality of life actually be quality of life again….