There’s been a lot going on in my life and while I’ve shared a little here and there (Twitter, Instragram, FaceBook), I wanted to do a catch up post on what’s been going on the last few weeks. I’ve labeled each section so you can read or pick and choose, if you prefer. I just wanted to cover changes that are now NOT happening in my life (that’s why they call me Capricious, right?), my appointment with my rehab specialist, and such wonderful and exciting topics as autism, skin cancer, kidney disease, mammograms, migraines and stress tests. In other words, it’s just another day in Spoonieville, USA.
What’s NOT Happening
So as I’m sure enough of my readers saw my posts about becoming a Lifestyle Coach for AloeVeritas that I really shouldn’t skate reporting that it’s not going to happen, now. This is one of those Capricious moments that I really don’t want to blog about. It really takes a particular type to blog their lives out loud like we health bloggers do, through all the embarrassing private moments of our lives, laying it all out for the world to see. There are times, when I feel myself pulling back, unwilling to admit when something doesn’t go my way. That usually means I feel responsible or stupid or naive about the way things went down.
The truth is I jumped the gun. I didn’t take the time to consider the 80 hour SGA rule for self-employed people on SSDI and the number of hours I’m already contributing to my work here at the Zebra Pit and making it into what I want it to be. I’d end up losing my disability payments well before I’m solvent if I did everything I wanted and I’m in no way confident that I even can really with my current symptom-level, so I had to choose. Of course my #1 choice is and always will be to work on my writing career in whatever capacity that I may. If I could just run out and get a desk job if things don’t work out and I lose my SSDI, it would be a different story, but I’m still largely tied to my homebound life due to MCAS, which makes doing something like sales a bit tricky. The sales side of things is meant to help support my efforts here, not put them in jeopardy. I’m not even comfortable in a sales role: Because let’s face it, I’m about as awkward dealing with people as a chimpanzee flying a Cessna.
I’m incredibly grateful to everyone at the company for being so flexible and understanding, including my own wonderful Lifestyle Coach for brought me in. I’ve rarely met anyone more understanding or caring. I’m also still a firm believer in these products and may someday go back when I don’t feel like my SSDI is riding on it. I need to reach self-sufficiency first, if that’s possible. I hope anyone who’s interested in the products utilizes the links in my articles to purchase from her. Her name is Deborah and she is wonderful; very patient, kind, caring, knowledgeable and also a spoonie herself, so let’s do what we can to support her.
The Rehab Specialist
Frankly, my meeting with my rehab specialist was a bit depressing, and left me with more doubts than assurances about my abilities after talking about all of the obstacles and accommodations I really need to be successful at working outside the home. At this point, I’d have to have my own office with a real closing door, a semi-reclining chair with foot stool, and I’d have to wear my mask whenever I’m not enclosed in my office if I were to work outside the home. Even with all of these accommodations, I’m not even sure that that wouldn’t spike my fatigue and cause me too many other symptoms, like an increase in migraines, brain fog, fatigue and overall pain.
My first choice is to stay here in my comfy recliner with my laptop in the safe environs of my apartment, writing quality content for the Zebra Pit and working on novels and poems. That’s the dream life in my book. It took me years to be alright with this hermit life. Now it seems I’m thoroughly dug in and content to stay here where it’s warm and safe. Which reminds me about another topic.
Am I Autistic?
My PCP is working on finding a place to refer me for an autism evaluation. Believe me; no one is more surprised by this news than me, even though it was my own self-exploration that led us here. I don’t want to get into the whys and wherefores here, I’ll write a full post on it, but based on everything I’ve read, I’m certain enough that I want to pursue it. I need to know for my own piece of mind. I need to know because there are things about me that I’ve never been able to tame, or change, and I want help with those things if possible. I need to know because like Bradshaw, I firmly believe “Hell, in my opinion, is never finding your true self and never living your own life or knowing who you are.”
Breathing (Not So) Easy
We’re also doing a stress test because despite my ability to work out fine on my recumbent bike, I can’t walk a short flight of stairs, up a mild incline or at a brisk clip for even 30 seconds without losing my air. I feel fairly confident it’s my lungs (asthma w/o wheezing), but he wants to rule out the heart, given the prevalence of early onset heart issues with EDS. My sister, paternal uncle and paternal grandfather all died before 50 from heart problems that I know very little about, as well.
There’s also a history of COPD on both sides of the family, more so my father’s, but it could easily be the long line of chain smokers in my family and not a genetic thing. I gave up my cancer sticks almost 4 years ago when my mother died from a COPD related pulmonary embolism a few days after hip replacement surgery, just days before my hysterectomy. I’m certain she was a zebra like me, and not unlikely to also be autistic, but I’m still putting this last bit together and I don’t think I’ll ever be sure on this last count.
I never really feared a surgery before that, or COPD that much, but I dumped the cigarettes then and there and have tried my best not to look back. I’m glad, given that they now make me tremendously sick and I break out in hives being around second hand smoke. Of course quitting when I did may not save me from COPD, as I smoked almost 2 packs a day for 33 years.
I don’t know that I fear death itself nearly so much as how painful and slow that death might be. You would think such thoughts wouldn’t faze me given I’ve lived much of my life with chronic pain and illness, but it does. I don’t want to linger for years in misery, hooked up on machines to survive. I sure as hell don’t want to be my mom and my paternal grandmother who took breathing treatments or oxygen and medications, but were so ruled by their vices, their own death and daily misery couldn’t make them stop smoking and/or drinking.
The Color Changing Mole, Mammography and Cancer Risk in MCAS
My PCP is also referring me to a dermatologist, blessedly. I’ve been wanting to go to one for years and years, but my old PCP always waved it off like I was asking for a vacation cruise to the Bahamas booked and paid for by him. I guess my wish is being granted for a not so great reason, though. Apparently, he’s worried one of the moles on my back has gone rogue. I don’t know why, but as a child I was terrified of cancer and couldn’t imagine anything more horrible. Of course I came to understand there are far worse fates than cancer, but I’ve always kind of wondered if there’s something’s to this fear. Is it what will kill me? I had no reason to believe there was any chance when I was a child. We knew of no cancer in the family at the time. Now we know different. Colon cancer runs heavily on my father’s side of the family and of course MCAS increases the risk because of the release of cancer causing chemicals from our mast cells along with the constant state of chronic inflammation our bodies must bear.
Consequently, this is also why I’ve refused a mammogram the last two years. I know it sounds crazy; I’m at increased risk of cancer, so I forego the cancer screening. However, I’ve read some studies that say that there are a lot of things missed in mammograms and that while the risk isn’t that great from the radiation, it still increases your cancer risk and I really don’t want to take that chance. My doctor argued with me pretty hard. His own mother had breast cancer, so he’s pretty passionate about it (damn, doctors are amazing when they care). I still refused. I guess I’ll go back and do more reading and think more about it so I’m better prepared when I go in for my pap, as I know I’ll have to deal with the GYN on this, too. I want to do the RIGHT thing. If anyone has any reliable sources on this subject, send them my way. I’ve been told more than once with my breast size I can’t be too careful, though breast cancer does seem to be one thing that actually doesn’t run in either side of my family. Before anyone recommends it, I can’t afford to pay out of pocket for alternate tests like ultrasound, either.
Why Me and Big Pharma Aren’t Really Pals
I also skipped the flu shot. The reactions have been hit and miss with vaccinations, but I just didn’t have it in me to deal with it and I feel pretty comfy with my daily vitamin C, hiding behind my mask and washing my hands obsessively. Of course I have to worry about what my husband brings home to me, but I probably will ask him to get the flu shot to help insulate us a bit. He has better immunity and can handle these things.
I don’t think my new PCP is crazy about my wariness of big pharma, but I did take the time to explain that Celebrex was heavily implicated in the development of my kidney disease and that Cipro was likely responsible for a missed semester of college due to a torn Achilles tendon and that the list only goes on. If I can do something naturally, obviously I’m going to. Had my proteinuria not been caught during a routine exam, I’d have lost my kidney function in less than a year. It’s not something you quickly forget.
Resurgence of Migraines and Eye Problems
Next week I have my stress test and a neurology appointment. I’m sure my head pain specialist is going to be thrilled to learn I’ve somehow managed to trigger my migraines into reappearing on a regular basis again, though they have calmed considerably over the last week. I’m hoping we can negotiate an increase in my verapamil rather than raising my topamax again.
I don’t know if it’s the migraines, my mast cells, or something else causing issues with my vision, but right now I can’t seem to maintain normal vision throughout the day. I’m having issues with focus, issues with blurred vision that may or may not have anything to do with focus and an increase of junk in my field of vision. It’s probably a combination. A woman on twitter told me her daughter’s migraines were resolved with eye therapy. Given the level of vision symptoms I suffer, that sounds like a good possibility to me and I may pursue it.
A New Look for the Zebra Pit
Finally, after all my medical appointments next week, I’m finally going to turn toward major site changes. I’ll be doing a complete overhaul, meaning the look and feel of the Zebra Pit is going to be completely different, so don’t be too shocked. I’m changing to more of a news magazine type layout and I think it’s going to work out quite well with all of the dedicated columns and sections we’ve begun to develop.
That’s it for now, as if that wasn’t enough. I know these rambling posts aren’t really a favorite of readers, but they’re a nice way for me to catch people up on the latest events going on in my life and kinda helps me gain a little perspective on the big picture. I’ll do my best to report back and expand on any ongoing subjects as more develops.