Thursday, January 24, 2013

Surprise!

Hi friends. I haven't written for a while for various reasons, but mostly because my health took a turn and I felt for a while like it wasn't POTS related so I didn't want to add it to the blog and possibly confuse people or just complicate things in general. Long story short, I had my heart attack in March and, even though I had a clean cath (they didn't see heart damage), it somehow damaged my hearts nerves. I started in July having more fainting with a different pattern than with my POTS. I would have NO warning and just drop. The loop recorder that we implanted caught the problem, a heart rhythm problem separate from POTS. (Like I needed two of them?) I found out that I needed a pacemaker and had one implanted within a week. Once again, for about a month after surgery I feel a lot better, but we think it was just my nervous system responding to the stress of surgery, it wore off though. The pacemaker is catching the heart rhythm problems from when I have my MI, but not the BP type faints from my POTS, so I still faint, just not as often.
So thats where I am now. I had some ups and downs with my POTS since then, even doing so well that I didn't wear my helmet for about a month, but it came back again after Thanksgiving. Since Thanksgiving I've been really struggling. Since then I've averaged about two or three faints a day, with 12 being my worst. Even with wearing the helmet again, it still hurts. I'm starting to feel damage being done to my knees, and bruises are becoming a constant reminder to me that this is all real. Sometimes it doesn't seem real, it seems like a bad dream or a cruel joke someone is playing on me. It makes me mad and frustrated, how could it not? But I keep reminding myself it could be worse. I keep reminding myself that we are working on getting me back to my life, I want nothing more than to be better so I can be myself again, not this sick woman who is stuck in this body that doesn't work.
I don't want POTS to hold me back from things, but I literally cannot do some things now. I really hate relying on other people, but at the same time, I don't have another choice. I can't take a shower without someone nearby, because I faint in the shower and someone has to be there to help me. That happened last night and I was unconscious for minutes because my Mom couldn't get me flat so my head was below my heart from the angle I was at. Thats scary, for me and my mom, I've started to space my showers out more, use a shower chair, use a hose shower, and only take them when my bp is high enough. Even with those precautions though, I faint almost every time I shower.
We finally got a wheelchair, which is very helpful when I'm out in public, but its too heavy for me or my mom to get in and out of the car, much less into the house. We're talking about getting a rollator or transport wheelchair for me to sit on in the house to get around, but we'll see. I am also still in the process of getting a service dog. I've been on the list for a while, but I need a poodle for my dad's allergies and it needs to be one that can cardiac alert, so it'll be a while before I get one. I have met several POTSies who have service dogs though and every one of them recommends it. It may be a big responsibility and limiting in some ways, it can give you your independence back and in my opinion, there is nothing that is more important than that for a POTS patient.
So I guess I'm going to leave you with this, a short update. I'll try to start writing more, I don't know if anyone is reading anymore, but if you are, I hope you're well.

In other news:
I got engaged!


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