Per usual, my life has taken strides with the same grace as the Tasmanian Devil. We have moved into our own place, albeit renting , it’s still our own. Finally freedom to rule my domain with all the color schemed, pattern specific tendencies my OCD requires. This has helped my depression tremendously. For the first time ever my kids played with neighborhood children their own age from sun up to sun down and I called them in for bed when it got dark. This is the thing dreams are made of. I have all sorts of IKEA dreams for this place and hopefully this spring have a neighborhood block party BBQ spectacular since I live on the best street with the best neighbors.
I’ve had a string of specialist appointments up in the city, because who doesn’t love spending 3 hours one way in the car in gridlock traffic in the summer? eh?? So far I have a lidocaine infusion set up for October after our cruise, this is suppose to work wonders for calming down my very pissed off CNS system, and since I’m not on any pain meds it’ll be the first time in recent memory (if it works) I could be pain free, or close to. I saw the infectious disease specialist and am negative for every tick bourne disease you could imagine. I just saw my cardiologist who is taking me off my Beta Blocker since it’s not doing me any favors and I’m borderline bradycardia, borderline first degree heart block and have inverted T waves (I don’t remember which lead), no biggie but obviously Propanolol is up to mischief and my POTS is no better. The last appointments I have left are neurology to re check Chiari and MS, and physical therapy (which I loaaaaaaaaaaaathe). I’m pretty sure I’d rather pluck out every single eye lash than go to physical therapy.
Anywho, per cardiologist he’s been in touch with Dr. Benjamin Levine regarding his POTS study that involved exercise as a means to help treat POTS when pharmacological therapies have failed and gave me a program to try. It makes sense in theory , however it seemed to be focused on POTS patients who have what they refer to as “Grinch Syndrome” who literally have a heart that is too small, and this is supposedly an issue in some POTS patients. I do not have a small heart to my knowledge, only super stretchy connective tissue, connective tissue which in effect acts like a stretched out elastic and in conjunction with a really pissed off nervous system, causes necessary life sustaining bodily functions to fall off the tracks . What I really need is something to get the broken elastic of my connective tissue to snap back, sometimes I feel like all I need is to be squeezed. I’ve worn those super attractive pantyhose to improve circulation, they work ok. I also have a weighted blanket that helps tremendously for sleep and anxiety. So far the non medication alternatives showed more promise , but it hasn’t been dramatic, just makes things suck less.
So this means I’m pretty much back at square one, getting off meds and going the “keep it simple” route. I’m going to be doing some more reading into POTS research since Dr. Levine’s seems to unfairly generalize POTS and doesn’t address other , more complicated , causes of POTS. It would’ve been interesting to see studies done in patients with EDS , endocrine abnormalities and other central nervous system degenerative conditions. Not everyone is so fortunate to be mobile and able bodied to complete this exercise program, what do you do then? I’m back where a lot of chronically ill folks are, in the waiting room of “we don’t know what’s wrong with you” purgatory. I don’t look sick, but my central nervous system isn’t quite right and my surgical/hospitalization record would tell you otherwise. Off the tracks once again, but sometimes after you’ve fallen off, and been broken enough , you get into this habit of picking your self up and putting your pieces back together.
I’ve excepted that I’m broken. I was born broken, I have been kicking around for over 30 years with defective equipment, and I know that I will never be “fixed”. There is no all better for me, I wasn’t meant to fall into the norm. What I was meant for was to appreciate the indomitable will and inner strength I was born with, to experience first hand how precious and short life is and to understand how the smallest acts of kindness can make the biggest difference. Chronic illness, particularly invisible illness, will show you what true love and friendship really looks like. Most importantly, chronic illness will show you the importance of loving your self and getting the most out of the life you were given.
Be well. I’ll be back.