Surgery tomorrow

My EEG mummy look. 

Tomorrow I am having surgery to get an implantable loop recorder put in. Its a small device, about the size of a flash drive, that will be put under my muscle tissue in my chest. It will detect irregular heart beats and give us a better picture of what is going on with all the fainting. The loop recorder can be left in for up to three years, so that will give us lots of data to work with.
I have to admit, I'm nervous about the surgery. Not in a "am I going to die" kind of way, more in the sense that I'm going to be unconscious on a table with two guys holding scalpels cutting me open. The risk of the surgery is negligible, its the risk of infection post-op that is what we need to worry about, especially with me fainting so much. Each time I faint while recovering, it risks ripping open stitches and allowing bacteria in. For that reason, I think my next week will probably be spent in bed. I'm changed my sheets, stocked my room with snacks and movies, bought some new coloring books, and sorted my next two weeks worth of pills out. I feel ready, I'm just nervous.

My broken finger. :(

Anyway, I wanted to give an update on progress.
I'm on wait lists for service dog and Dr. Grubb.
I broke my finger the other day falling on the steps in front of our house.
My EEG came out normal, no seizures!


In other news, our garden is in full bloom! Got Pots? :)

Got POTS?

Rise Above

I'm frustrated and I'm angry, but thats okay. These emotions have gotten a bad rep in modern culture. We like things to be polite, nice, and positive. Negativity is generally frowned upon, but needn't be. While walking around angry all day is no way to live, its still a valid emotion in some situations, one of which being dealing with disability. 

I just fainted outside on the gravel and stepping stones in front of our house. This has become a regular occurrence in the past few weeks, but today was different. Until today I had been biding my time until my wheelchair came, today my insurance notified me that they don't see it as medically necessary because my legs work and aren't going to cover it for POTS. While I have every intention of fighting back, this angers me. It infuriates me. I have been passing out everyday multiple times a day for weeks. Even with a helmet, thats a lot of injuries. Only last week we found out it wasn't seizures, so now we're moving forward with the loop recorder implant. When the neurologist found out I had been waiting since April for a wheelchair he said that was "unacceptable" and that I should be in a wheelchair all the time. He stressed the point that I've been lucky to not have any spinal injuries or broken bones (except my finger). He even said that I should sleep on the first floor until we get this all under control. My cardiologist said similar things as well. I hate that the insurance is preventing me from getting the things I need to get some of my life back. 

I'm angry at insurance, for not covering me for my wheelchair. I am angry with the situation I'm in, having to be so dependent and not being able to do the things I want. I'm angry with my body for not doing what I need it to do, not even allowing me to stand sometimes. While this seems really negative, an in a way it is, just the act of acknowledging my anger seems to help. I know that this situation may be permanent and it may be temporary, but I'm just tired of fighting needless fights while I'm treading water to keep myself going. 

On days like this, when the negative seems to be taking over, I remind myself of my mantra. "You can't be a phoenix without ashes." Bad things are going to happen in your life. You will be frustrated, hurt, depressed, betrayed, and more, but you can't let that define you; let it transform you into something better. These things present us with opportunities if we look at them in the right way, opportunities to become better and stronger people. If we look at the challenges we are faced with as chances to improve ourselves, we can get through them. Then you can rise above and be a phoenix. 

Adapting

I find myself surprised by how quickly things seem to pass. Today I was getting dressed and put my helmet on without thinking. I looked in the mirror to make sure my necklace was on straight and it took me a second to notice the bright green helmet sitting on my head. When I got the helmet, I thought I would never get used to it. Then it was this clunky big thing sitting on my head making me feel and look like a doofus. Then it was just another way for me to look and feel like there was something wrong with me. Then it was my version of an ever present reminder that I wasn't healthy.
At first I just got stared at. Then there were some snickers and whispering by kids and teens. I've had my share of stupid questions asked "Are you retarded?," "What's wrong with you?," and "You know you still have your helmet on?" I've had embarrassing moments because I'm wearing the helmet, but they don't matter. What matters is that when I wear it and faint, I don't get a concussion. I've realized what should have been obvious to me in the first place (if not ignored by my own self-consciousness) the way I look today doesn't matter, protecting my head from permanent damage does matter. I guess it just took me time to adjust my way of seeing it, but I feel like I got there. Now when someone asks, instead of being embarrassed, I explain that I have a heart condition that makes me faint and the helmet protects my head. Simple as that is, it both educates them and reminds me why its so important to wear.
So while I probably won't be winning any fashion shows today, I have the most important piece in my outfit proudly on my head. Its my crown of sorts. I am proud to wear it because it reminds me of everything I've been through and the fact that I am taking control to ensure that tomorrow will be better.

Its all about adapting to what you're given and making the best of it.