Pharmacy rollercoasters

So I get a message that my prescription is ready. Which prescription is always a surprise. I'm thinking it's the new medicatiofn called florinef to replace the midodrine to increase my blood pressure right? Ha!
I get there and it's my muscle relaxer, bummer. So I ask about the florinef because I'd like to have it today so I can try it first over the weekend when my husband is home. Guess what? It's backordered until Feb 18th!!!!! They have none. No Kaiser on the peninsula has any. At all. It's out of stock because everyone who currently takes Midodrine has been switched to it and the pharmaceutical company can't handle the new volume.
I didn't even know how to respond. I almost started crying. The pharmacist came over and the guy who's been helping me thru this bullshit asks her if there's anything else I can use. She says Sudafe, not without compassion. So I leave. Dejected and trying not to cry.
As I sit down in the car my phone rings. Its Kaiser! It's my friend in the pharmacy I just left saying "have you left yet don't leave! Come back!"
"What's going on?"
"We just got our shipment and opened it and midodrine is in it!"
I've been burned too many times before so I say "are you sure? Do you have it in your hand?"
I hear him mumble to the pharmacist to hand him a bottle. He laughs and says "I'm holding it right now"
"Ok I'll be right in"
I drag my poor 5 year old who has been so patient with these million trips to the pharmacy back into the building and into the pharmacy where the guy who called me sees me and laughs.
So, I've been given a one month reprieve....
We'll see what happens now.

Is this really happening?

Over a year of feeling awful. Over a year spent mostly in bed unable to move or think. Over a year of checking out of my life and avoiding things I love. Drs appts, tests and knowing something was wrong.
Something was wrong. Is wrong. It's called POTS.
My diagnosis did come with positive news. The medication they prescribed called Midodrine actually did begin to give me good days. Once I got to my full dose I began to have days where I started to feel cautiously human. Yes, I needed to hydrate, take my pills on time, eat more and rest more, but it was working. I just came off of 7 good days in a row. SEVEN. That's the first time in over a year I have gone seven days out of bed and able to function. Maybe my payment will be three days in a flare in bed, but it was becoming manageable and I saw a glimmer of a light at the end of that long tunnel.
I should know better by now. I really should.
They stopped manufacturing the medication. Of the three companies that make it two of them stopped and the other has limited supplies. For the whole country. I was only able to get four days worth from my pharmacy and was then abruptly told that was it, the manufacturer wasn't making it and he couldn't find any more in their pharmacy system. In checking my online pharmacy to see updates my Dr prescribed a new totally different medication and discontinued my midodrine Rx. So apparently I'm going to try that and just see what happens. No she didn't tell me.
Oh yes I'm serious. You really can't make this stuff up.
The new medication is meant to raise blood pressure like the midodrine does, but by a completely different mechanism. This mechanism (increasing the volume of fluid in your circulatory system) carries with it risks that were enough for my cardiologist to say he doesn't prescribe it and doesn't recommend it. Well, now that's all there is so he, and I, have no choice -risks or not.
It also carries with it a whole new set of lifestyle rules and changes to be made. Just as I was really getting a routine that, though a pain in the ass, really seemed to work.
Over a year in misery and finally some help only to have it abruptly taken away again.
I'm beginning to think they should change the name Murphy's law to the law of Kim's health.
I'm in shock and devestated. If that seems like an overreaction to anyone I want you to go climb into bed and not get up for a year. I'll talk to you then.

Heart breaking cardiologists

Ever had your Dr feel sorry for you when they tell you there's nothing they can do? It's not as fun as it might sound.
So, I'm through testing with the cardiologist. There is nothing wrong with my actual heart (which we knew, he just had to test to make sure).
We have landed on Dysautonomia with Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Hypotension. Quite the mouthful right?
Dysautonomia is a malfunction of the Autonomic Nervous System which controls all body systems that work without you telling them to (heart beating, lungs breathing etc etc). It has two branches: parasympathetic and sympathetic which control some of the same and different things and the same things in different ways. Got it?

You can read all about them by clicking on the link, but really it means my brain doesn't communicate with my body. It doesn't consistently tell it to breathe, move my blood around, pump my heart, digest my food, etc etc etc. There's a full list in the link.
This disease is frequently shortened to the term POTS because that's obviously a million times easier to say, but it is so so so much more.
The biggest concern medically and symptom wise right now is my heart and circulatory system. So off to the cardiologist I went for testing to make sure it was my nervous system's control of my heart vs. my actual heart. Yup! But when I asked him for a prognosis his face fell and he said "There is no fatal or awful medical prognosis (yay!), but that is easy for me to say, you are the one who has to live with it. POTS is tough, there is no FDA approved treatment and it is not studied at all. The real prognosis is that you will have good days, ok days, bad days and really bad days. You have to find a balance that works for you and make the most of your good days."
"But what about this medication that seems to be helping" I asked.
"It can only do so much and requires it's own side effect management. Regardless of the medication you will have bad days like you experience now and sometimes won't know why."
During this conversation his face fell and I wondered why I suddenly felt worse than I had walking in. Was he pitying me? He was fully acknowledging that this disease is basically just going to suck for the rest of my life and we can treat it and try to keep it under control but nothing will work as well as we want it to and it will never get better. He was telling me that yes he had an answer for me in terms of a diagnosis, but it didn't by any means come with a fix. Huh. I left feeling disoriented and sad, but unsure why until I realized he felt sorry for me. A cardiologist. I'm so used to Drs trying to keep me hopeful with the "Next treatment" and making me feel like I could overcome whatever with some other random trial of treatment, even though I knew that wasn't always true. Honestly, it was actually refreshing to have a Dr be totally honest and say "I can't do anything for you and it's going to suck. Make your good days good".

So, I take medication to increase and stabilize my blood pressure and I endlessly read and researched other treatments and lifestyle changes I could make. I am the lifestyle change queen after all!
Hydration at the right time, keeping my blood sugar level, eating more salt than you can imagine (actually taking salt PILLS at times), walking but not overdoing it and keeping track of my neurological status (because it gets overloaded easily by loud noises, bright lights or too much stimulation), all became unbelievably important in my daily life. If I miss a hydration timing, a medication dose, overdo it physically/stamina wise, don't eat enough or basically am not perfect in my regulation of my day it can trigger a flare up that so far seem to last for about 3 1/2 days. Once I'm in a flare up it's basically just hold on and get through because there's nothing I can do to get out of it as far as I can tell so far. I just have to wait it out in bed in a dark room. It's 3 days in bed and then the 4th day I can get up, but I still feel crappy. Day 4 (so far) seems to be the road back to feeling decent.

I requested a referral to a specialist and received one for the Stanford Autonomic Clinic in Neuroscience. I'm waiting to hear if I've been accepted into their program to see what they have to say. I'm lucky enough to live 20 minutes away from one of the few and best specialty clinics on dysautonomia in the world. I hope I can take advantage! Keep your fingers crossed.

That's a lot of technical information to take in I know. Now that we have an "answer" hopefully I can get back to writing about daily life with a chronic illness... But for now that's it. That's the latest. How I feel about it is complicated and changes daily so trust me you'll hear about it.