Right now I am in some real pain, though you know the beast and then it bites harder than ever and you learn something new. You learn that sometimes you must learn to live with your pain and not without it because that may not be reality. Unfortunately sometimes it isn’t realistic or possible to diminish one’s pain unfortunate as that may seem. I happen to be one of those few patient who has access to just about any opioid I ask for due to how well I regulate my medication and have proven to my doctors that I come nowhere near to abusing it. Actually ever since a family member overdosed on opioids I’ve been afraid of my own medication and that’s a mental demon I fight every time my mother asks “Mike do you need Pain meds?” I struggle to say yes when I do need them ever since that event. Life isn’t as easy for me as it is for normal people, hell I no longer know what normal even feels like.
Speaking of normal what is it like is it boring, calm, peaceful, or enjoyable? I honestly don’t know how it is I’ve forgotten what normal or not being in pain is like. “Pain free” just isn’t a reality to me I struggle with that fact every day of my life and continue to seek my “Dr. House’ a physician who is interested in my case and look at it as an enjoyable exercise or puzzle to figure out. I wish I had the money to pay ALL of my specialists and some consultant doctors from Johns Hopkins, the NIH, Mayo Clinic, and Mass General to all come sit down and go over my case as a team. Then spend a week or two in a private hospital room seeing each of these doctors and doing any tests they want and examinations over this time. Halfway through and at the end the doctors would consult with me as a group and come to a conclusion finally as to which Vasculitis I have if it isn’t Churg-Strauss Syndrome and other diseases as well. I really need some miracle A-Team of doctors or something I feel or else I’ll essentially be left with a death sentence to die around 38 years old. That’d be sad and I really want to live, but the future seems bleak for this patient.
As you all know I’ve been doing well in the job market and progressing my website as a business, but it’s all extremely frustrating! I’m doing we;; with my business but I can’t get myself to feel good enough to push my skills and outgoing personality to the next level. Hopefully soon I will find reserves of energy I never knew I had but currently life ids just plain and I have a great will to succeed! Thank you for reading and listening to more of my complaints I don’t feel much better but at least I feel slightly better now that I’ve written at least a little bit. I always try to vent through my words as somebody can typically relate to the situation which is interesting.
Also last night I came inside from the Hot tub just to pee a stream of blood, now I’ve had blood in my urine for awhile now but now crimson red stream like that it was very frightening to say the very least. It really bothers me even to this moment the following morning I was afraid to urinate this morning because of what might happen if I did so. I simply cannot get used to the idea of blood in my urine being in any way ok or normal. However my doctor just says stay on the (not helping) antibiotics and all should be fine. I think they’re taking my symptoms far too lightly at this point.Thank you agaian for reading and listening to my problems in life and with my work as an advocate, They clash sometimes but I always make it work out so that I can continue my advocacy no matter how disabled I become.