Anniversaries, POTS Perspectives, Suggestions and Such

I have not written a post in a long time, since we have been furiously working on the Dysautonomia SOS website.  I also have been doing a few "normal" things and living life a bit.


BUT! Last month marks two big health anniversaries for me - it has now been 10 years since my first POTS episode in the Florida Keys, and 2 years since I became completely disabled by it. At least they both happened in the same month, right? So I can think about both, reflect, yadda yadda yadda, and move on. Having to do this twice would have been annoying.

So ten years. Did I think this would be going on for a decade? NOPE. But it has.

Unless you are super lucky and see an amazing doctor when you first get sick with this, like the one's on our Advisory Committee, when diagnosed, patients usually hear one of three things:

"Oh, POTS is no big deal, you'll grow out of it"

~or~

"I have no clue how to treat this, NEXT"

~or~

"It's just anxiety, take some Zoloft"

I have heard all of these. The only one that has been true is the second. I actually appreciate when a physician admits they don't know what to do with me, instead of making something up. Up until I was super-dooper sick two years ago, I heard all three regularly. It took me almost dying and being in the hospital for 9 months to be taken seriously.

And now, 2 years have passed. So what has changed? Well - since being released from the prison, I mean hospital - I definitely have improved. But not because of any new drugs. And not quickly. The things that jump started me getting up and moving a bit have been three fold:



1. IV fluids at home.

I made it upstairs!

These have been a life saver, and my tolerance for standing and activity went from basically a minute or two, to sometimes being up walking and moving for 10 minutes. Just last weekend I made it up my stairs to my son's room for the first time since we moved back here. On my butt, feeling like dying, took me three days and a few bags of fluids to recover, but I made it! I can do short spurts of gardening, I sit up with my legs down, and do not get dizzy as quickly, nore do my feet turn lovely shades of red/purple as quickly. So that is progress. It started with IV fluids - a big thank you to my amazing doc who prescribed them!

My thoughts on IV fluid treatment: They are temporary. They allow a patient to get reconditioned and transition off. The goal is not to stay on fluids for life, it is to get conditioned enough or find other meds and treatments that work so the IV's can be on an emergency basis only. Why so many doctors are against this is beyond me! Even if my veins give out (which they are starting to - and I can not get a port due to blood clotting issues), I have made strides I never would have otherwise. I do not want to spend hours hooked up to an IV multiple times a week for life, but for now, it's allowing me to increase my endurance. I'm hoping to talk my doctor into doing a publication in support for temporary IV fluid therapy for POTS (if you are reading this - you know who you are!) for Dysautonomia SOS. There is a ton of literature to support this, all related to the RAAS system in POTS patients. 

Outside! With everyone!

2. Family Support. 
My parents moved down to be close to my family back in April, and we moved back into our (little) town-home that has been modified so I can get around - except for those cursed stairs. Having my parents help with the baby daily, and being able to push myself both on my own and with PT has been a God send. Before, I had to be very conservative, because if I passed out alone with a baby at home we both would be in trouble. Now I have help nearby, and I get breaks throughout the day, so I can push my activity level. I'm very blessed to have this support - and an amazing husband and parents to help.

If you do not have family support, try to find friends, a church, or local programs that can help. Doing this alone is not preferable. Google "disability services (enter your zip code)" and "disability charities (enter your zip code/city)" to start hunting for resources. Contact your local Social Services office. Check out this page for more disability resources as well.

My parents taking the kids to see Santa

3. Reconditioning.

Kids with me at the hospital in Oct

I spent three weeks back in the hospital in October after a stroke/TIA scare, and 10 days of that was in an inpatient Physical Therapy program. I struggle with exercise, because I get physically ill from doing too much (fever, swollen gland, flu aches, the works). Finding that line - and not crossing it - is tough. My Type-A self wants to go full blast at everything, so it is hard to step on the brakes. While in this program, I was able to try a few POTS meds (both were a major FAIL), do some hardcore PT and OT, and not "worry" about conserving energy for family or crashing. If you are severely deconditioned, I highly recommend it! There are inpatient PT programs all over, just be sure to call or speak with someone about their knowledge of POTS, and even if they don't know about POTS, if they are willing to listen, read, and chat with your doctor it may be a good option.

____________________________

So - do I know what is causing my POTS and autonomic neuropathy? Even after 10 years and all of this? NOPE. But we have ruled things out, and I will keep plugging away. I obviously have more going on - AS WE ALL DO - because POTS is a syndrome and not a disease. And neuropathy is ALWAYS caused by something. It's hard not to get burnt out, but I feel if the doctors had known my underlying cause, my pregnancy may have not been so tough, and I may not have died, and I may not have withered away into a deconditioned state while on 9 months of forced bed rest in the hospital, not even allowed to get up to use the bathroom (yay for bedside commodes!).

Biggest lesson: 
Keep pushing for answers! But also don't let it consume you. Live life to the fullest with where you are at. Accept that people will fade away, you learn who your true friends are, and value those that stick around. Find a good doctor who will listen, and try to help you improve your quality of life. Because even if I find some crazy underlying (or painfully obvious and overlooked) cause, if my quality of life sucks, it's all for nothing, and I will have wasted those years looking.

If I was a chicken...

Wishing you balance, peace, a fighting spirit, vertical success, and may the force be with you. Always.

--Claire

PS - Shameless plug: check out the new little business I started making custom crochet stuff and jewelry! Will have custom awareness stuff on there soon!