Tag Archives: POTS

Another Appointment

So Tuesday morning I am going to Little Rock for my appointment with a geneticist.  I’m pretty nervous because I’m not sure what is going to happen.

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(Addy is having a very relaxing Easy)

I am hoping they will refer me to the other specialists I need to be seeing. Since moving here from OKC about a year ago, I’ve only gotten a pain management doctor in the state, and that was a complete disaster. I’ll write a post about that experience sometime in the near future,  it will make me too angry if I try to do it now.

I know I need MRIs of my brain and spinal cord. Since having surgery for Chiari Malformation,  I am supposed to be scanned every 6 months and it’s been over that.

I’ve been having significant numbness in my hands and, recently,  my feet and arms. This scares me because it is one of the symptoms of Syringomyelia,  the hole in my spinal cord, getting worse.

Also, I’ve been having a lot of neck pain, sort of like someone is jabbing a knife around in there. I know I have craniocervical instability and that will most likely need to be fused. That type of surgery scares me a lot, but I know it would help a lot of the pain go away, so I will go through with it if suggested.

I’m interested to see what the process is at the geneticist office and I’m really hoping they will refer me to some good, knowledgeable doctors.

If you have been to a geneticist,  or have any of these conditions,  I would love to hear about your experiences: Chiari Malformation,  Syringomyelia,  Ehlers-Danlos Syndrome,  craniocervical instability,  spinal fusion, Tethered Cord Syndrome,  POTS,  etc.

Hope you all have a great Monday morning!

Hugs, Kat


Trying to Find the Words

No, this post isn’t about a crossword puzzle, although the way I feel can be more confusing than one at times.

I’ve had another bad day. Not a bad bad day, but bad enough. High pain levels and wonky emotions.

I seriously wish that all the people in my life could experience,  for just enough time to really understand,  what I go through each day. I don’t wish this permanently for anyone of course, but no one realizes that simple tasks are NOT simple for me anymore.

Pain rules my life. It has been raining today, so the pain in most of my joints is even worse than usual.

I expend energy, which I barely have, on the urgent tasks and if I even manage to get through them, I am done. Sometimes for days, depending on the situation.

Then there are days when I can’t even force myself to do basic everyday things, let alone anything urgent.

Then depression from pain, lack of consistent sleep and the fact that I can no longer function normally, sets in.

It’s a vicious cycle. Stress makes my symptoms worse.

Now, I have plainly stated this to everyone in my real life, yet people continue to try to start drama and have impossibly high expectations of me.

I can’t find the magic words to say, that will make people understand. Or at least try to. Or even give a shit, some of them.

I know this isn’t a very inspiring post… at all… but if any of you are going through this, know that I’m right there with you. If you want to vent or talk about it, leave a comment.

I’m going to next post about some of the ways I cope with this issue, because this post is already getting a little long. Here is a preview of one of my coping “methods”

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Can you guess what it is? =^..^=