Mrs POTS is a bitch

Continued...
My Drs are fantastic and have really stuck with me. Specialist after specialist, emails, phone calls, tests and more tests. Nothing. Well nothing that was causing what I was going through (they tacked on a couple more autoimmune diseases so if you're counting I'm up to a solid 4).

Now, autoimmune diseases they generally come in "packs". They like company. So, yes I have many diagnosis now, but it is for that reason. It's all just cause and effect in a vicious circle. It is nothing unique to me at all. If you meet a human with just one autoimmune disease be surprised.

But, I think we might actually have hit on something. I kept telling my Drs there was "something else" going on. The utter weakness in my limbs to the point where I drop things and feel unstable walking, the complete lack of balance to the point where if I don't pay close attention I will run into walls or tables, the feeling that my body is shutting down and I better get to bed fast, the complete neurological overload when there are too may lights on, or the TV is on too long, or I stare at a computer too long ;) I was convinced these were something else, something we hadn't discovered and out of desperation I went to my GP to beg for genetic testing, to tell her we were moving because of this and to basically just say "I'm not willing to give up, there's something else wrong and we need to figure out what it is." This Dr suggested I monitor my blood pressure...... and there you have it.

This new diagnosis is called Dysautonomia with postural orthostatic tachycardia syndrome (POTS). Basically all of these fancy words mean

that my nervous systems are not communicating with my body to make it do the things it should "automatically" (Autonomia) do, like make me breathe, control my blood pressure and heart rate, control my digestion and so on. Anything your body does without YOU telling it to is part of the autonomic nervous system. When that fails, which apparently mine has, it wreaks all sorts of havoc as you can imagine. The havoc it seems to be wreaking on me is that my circulation is allllll out of whack. My BP can't decide what to do and when I change positions it has a tendency to drop, causing my heart rate to go through the roof and that feeling that everything is going to shut down soon. I do feel like I am going to pass out A LOT, the world goes black or starts spinning but luckily I have not fully passed out yet. (fun conversation to have with your 8 year old by the way- "Ok if mommy passes out don't be scared, just call daddy"). Another issue with your circulation/BP and heart rate not working the way they are supposed to is crushing and debilitating fatigue since your blood isn't getting where it's supposed to go! My brain overload, tremors, heart palpitations, constant fatigue, weakness, headaches and so much more can all be explained by this one word dysautonomia.
Now, I have been here before, I'm not throwing any parties yet, but I FEEL like this is right. I FEEL like this is that something else I kept telling my Drs about.
As a trial while I go through tests with a cardiologist she gave me a medication to increase and stabilize my blood pressure. As you can imagine this carries with it some side effects and management but the relief was instant. Not completely, not even 25% honestly, but enough that I noticed. Enough that it really reinforced that we are on the right track. Increasing dosing seems to increase symptom relief.
But, like I said I've been here before. Grain of salt etc etc.
So, I'll keep you posted. As much as my body will let me anyway.

Staying alive takes a lot of time

This is a long one, folks since I'm so behind. This will hopefully explain why......emotionally.
This has been a really tumultuous time. I'm not going to lie or sugar coat. That would be a disservice to people suffering with illness, whether mental or physical.
There are mountains, valleys, caverns and trenches in life. I think we can all agree.
This has been a trench. A long, long very deep trench. I understand it is very hard for people to understand how health can fail so quickly and completely, but as a healthcare professional I can tell you that it's actually quite common. People joke about the fact that I have so many diagnoses and that is perfectly fine, humor is my savior, but in these jokes sometimes I hear a note of disbelief. Not necessarily that I am lying, but maybe my Drs are wrong, or maybe it's not that because how can one person have so many things wrong? Well, here I am.

I have an amazing support system, I've said it before and I'll keep saying it. If I have a problem I have a number of people I can rely on, not everyone can say that. But to that end I'd rather not need that support system. Yes, I am lucky to have it, but what if...what if I had a life that didn't require it? What if I could trust my body enough to make plans? To know that tomorrow morning I WILL be able to make it to my daughters assembly where she is singing.
Do you know what it's like to never know if you will be able to get out of bed from one hour to the next? To never be able to say "Yes, I will do that with you", to never buy tickets to anything ahead of time, never have goals for your day, never make plans, to not even know if you will be capable of something as simple as getting in a car and driving 3 miles to pick your kids up from school?  To 100% not trust your body not to fail you? This is my life.
This is where this trench has led me. My attitude about all of this is still overall positive and I think my life is still pretty amazing. Which is why I fight everyday to get up, but rest enough; do what I need to do, but not too much; research research research every illness and treatment I have or want to discuss with my Dr. I fight to eat in a way that keeps my body happier, to walk around the track at my son's school every morning so that my body doesn't decondition on top of it all. I fight everyday to do my physical therapy from my spine surgeries so that those are still successful. I fight with my Drs, my body, my socks, my clothing, my pouf in my shower, my eyes, my hands, my left leg, my back. I fight.
So, yes my attitude is still good, but sometimes it gets real.
I get tired of fighting. Doesn't happen often honestly, but it happens and more often lately. I get down and frustrated and confused. All of this is par for the course. But what do you do when this all makes you start to question why you are even on this earth? Why you were put here to just lie in bed and disappoint the people you love over and over again. To burden your friends and family. What use could there possibly be for this life? We get one life, one body and I am trapped in a very broken one that I can't return or exchange. So, when it doesn't work what do you do? I don't have an answer other than: fight and smile.

The technical health stuff of late is that about a year ago I had what we now know was a severe and rare neurological reaction to a medication I was on. If you've read this blog in the past you may remember. It made it impossible for me to get out of bed other that the bathroom 10 feet away. I had to go back to using my wheelchair or cane, I couldn't think straight even forgetting how to read at times and I laid in bed staring out my window for weeks at at a time. My team of Drs was so convinced that I had MS the neurologist ran every single test he had for it, therefore it took months for me to get a proper diagnosis. And it really is just a diagnosis of exclusion.
The reason I bring this up again a year later is to be honest and up front and tell you all that it never really got "better". Many of the symptoms went away so I did have an improvement, but something lingered. My days in bed went from 7 days a week to maybe 4-5. Most days I was still in bed but I was able to pick my kids up from school and do the bare minimum to take care of them (During my worst time they went to a friends nanny and daycare everyday). Once the neurological symptoms started to subside we really expected the progress to continue, but it just....stopped. I still was unable to get out of bed more often than not and I have not felt "good" or "normal" in over a year. Yes, for the entire last year. Every day. I feel best in bed in a dark room. And that's the truth. So now, for us it has gotten so bad that we are planning to move wondering if a different climate might help. Most days I feel like all of my focus and energy is just on staying alive. Making sure my kids are safe, and that's it. My entire world has had to be my health and I have been forced to back away from a lot of things and probably people in order to just survive. It sounds dramatic, but ask anyone who truly knows me especially my husband. It's not dramatic.

This has brought up a lot of emotions I really haven't dealt with before. A lot of thoughts that had never surfaced. My earlier question of "why do I even exist?" being the spring board.
The vast majority of my life I have always been firmly on the happy end of the spectrum. Ridiculously happy at times. I believe in being positive, I believe kindness is the most important thing a person can possess, I believe in focusing on what you have not what you don't, to accept people for who and where they are and I have been blessed with the strength and ability to change situations that I need to. But, when you spend close to a year in the dark in bed listening to life go on around you and without you, your place on the spectrum becomes unstable to say the least. I have found myself slipping further and further down it with each inconclusive test, each negative result, each day I had to ask for help for something simple, each time my kids asked me why I couldn't do something, go somewhere with them or even just get out of bed to come to the dinner table. Each time my husband kissed me goodnight at 7pm to go watch TV alone. Again. Each day my husband came home from work exhausted and still had to make dinner and put the kids to bed because my body wouldn't work. It's almost like a little bit of your heart gets damaged each of these times and eventually it just doesn't heal. Eventually it stays this broken part. How many times can your heart break and you keep your positive attitude or your sanity? 9 years. That's how long we have been living with these illnesses. That's when I developed my first autoimmune disease that would forever alter the course of my and my families' lives.
Now, I will pick myself up and I will fight. I will keep going because I just wasn't made to give up, but I find that it's harder or further to pick myself up and the fight is getting harder. And sometimes I wish I was made to give up, just for one day. Just one little day to have a break from pain, illness and heart break. Just one.
The good news is that I think they may have finally gotten to the bottom of the problem. Good or bad I think we've got it....

Continued....