Friday, June 19, 2015

All the medical TMI

I recorded a video blog last night to share with you today, but for two reasons I am unable to do so:

1. It's too long to upload, apparently, since it's not uploading.
2. I was trembling so hard, it was quite frankly disturbing.

I'm not well. Let me just give it to you straight:

*My heart is stupid, in more ways than one, but mostly its irregular rhythm resulting in bouts of tachycardia (100+) and bradycardia (50). I become understandably stressed when it's up, and feel like I'm dying when it drops.
*My kidneys are pretty wrecked. I appear to have progressed from CKD to CKF. It will be discussed with Renal Clinic in late August. I'm in pain and having more endocrine-related complications than I used to.
*I have severe uncontrolled Osteomalacia, a musculoskeletal disease in adults that is the equivalent of Rickets in children. It is very painful and makes me breakable. This has been a risk for years, but medication is not working. It has been doubled, which is dangerous, but at this point we don't have a choice.
*I was tested for cancer recently after a scare. It was thankfully negative.
*Pressurized oxygen isn't going very well, but I'm having to use it anyway because I can't freaking breathe normally and it's really painful.
*My sleep deprivation remains fierce and is negatively impacting every day.
*I have permanent muscle weakness that is not being resolved with HKPP treatment, although the treatment IS helping to prevent a constant state of paralysis. I still have episodes that are caused by specific triggers but I'm not staying paralyzed like I was a few years ago, so knock on wood. Unfortunately my profound weakness appears to be here to stay regardless of my potassium level. The Jackson Muscular Association clinic said the same thing they said two years ago - there's nothing more they can do. My medications are maxed out - my body can't tolerate anymore. They're transferring me to a small clinic in New Orleans for future clinics where they will continue to document my progression.
*My decline is noticeable. My doctor and his nurse were very unhappy with how sick I looked, ordering stat labs and a breathing test as if I were in the ER. My pharmacist was so concerned by my appearance an hour ago, he asked me for details, took out a note pad and added me to his prayer list. People in public look at me like they're wondering what the hell is wrong with me. I look bad.
*I've been ordered to avoid any and all stress because of my heart and other muscles. Adrenaline is a huge episode trigger, and it doesn't take much.
*I'm having car trouble including no air conditioning. Very unsafe for my condition in general, but especially right now.
*I'm not coping with being away from my nieces. I scheduled a trip to see them but had to cancel it. I have thankfully rescheduled the trip and will be making the drive as soon as I am strong enough. I am going to apply for public housing in South and Central Louisiana while I'm there.
*When I am this sick, I become lonely to the point of depression. Anyone who knows me well knows that isn't common for me. I'm a lone ranger and a fighter, but this has been hard.

In summary, systemic disease sucks. I am so grateful to the friends who have reached out to me outside of Facebook including Facebook friends, Twitter friends, Whovian peeps, and folks I have known "in real life" forever. The emails, funny and inspirational tweets, prayers, well wishes, sweet smiles, and simple hellos have meant a lot to me, and I hope you will continue. It is challenging to live life not knowing if I'm going to exist like this for decades or if my next episode will be my last. It makes one see the world and everything and everybody in it from a different perspective, I guess. I have always lived with a sense of urgency, and I'm sure I always will. Thanks for tolerating that facet of me, especially if you don't understand it. Your kindness is not taken for granted.

If people only say two things about me after I leave this world, whenever that may be, I hope and pray it is this: nobody tried harder and nobody cared more.

Love to all.