Thursday, September 27, 2012

In all Honesty...

...I hate living in pain every day.

Yes, I am throwing a bit of a pity party today. I know it could always be worse so I don't like talking about the pain and issues I go through very much. However, not talking about it doesn't mean that it's not there. I can't deny it. Maybe talking about it can encourage some others because they will realize they are not the only ones and they are not "crazy" and the pain is not just "in their heads."

It is real; the symptoms that we experience do exist!

I couldn't tell you what the root cause of my problems any more. I do know that at this point I have a running list of diagnoses:
  • Fibromyalgia
  • CREST (limited scleroderma; type of RA)
  • Chronic Sinusitis and Allergies
  • Nerve Palsy
  • Vocal Cord Dysfunction / Paradoxical Vocal Cord Motion
I've also been tested for Myasthenia Gravis by multiple neurologists (on their decision, without my ever stating that I had been tested for it previously, etc). Based on some things I have read, I think this might even explain some issues we had with our daughter after she was born. However, every neurologist has only done the nerve conduction/stimulation test and quit looking into it after those results are not definitive or "negative." Maybe it really is just the nerve palsy that causes the intermittent eye dropping and vision problems. Maybe it is just the PVCM, which I wasn't diagnosed with until this year, that causes the issues with swallowing, etc. Who knows why I feel like I struggle to hold my neck up and feel like I can barely move my arms and legs at times. I'm not the doctor and can't diagnose myself, but this condition keeps coming up during visits with various doctors across the past 10 years...but I can't add it to my list yet.

I used to think I would end up getting the right combination of doctors and medication and all my problems would be solved. Now, I realize I have to come to terms with my new "normal" and my current limitations. I can try to push, but I pay for it dearly. During the last months I was at work, I was miserable. I wouldn't accomplish much of my duties during the day while I was pushing myself to "be at work." I would then come home and quickly realize how much of a "mess" I was in as I would end up shaking, teeth chattering, nauseous, and crying because of the amount of pain I was now in merely due to the fact that I had gone to work that day...not even that I had done that much. Now, the mere act of dropping my daughter off at school can still be enough to set off an extreme bout of pain. Oftentimes, I will return home from dropping her off and it's as if all the nerves in my body are firing at once. (Have you ever had a migraine? You know the pain you get in your head at the slightest hint of light, sound, etc? Imagine that type of pain radiating throughout your entire body...not just certain points in your head!) There are still days I get to the point that I think I can't take it any more.

Admitting what I go through is still hard, and typing about it (both the physical act and the act of making my admission more public) is even worse. I hope just getting my thoughts out will help someone. At the very least, maybe this will offer at least a bit of catharsis.

This is all I can do for the day, but I will try to start posting more again, whether it's about my issues or something else.

Please let me know if this helps you. I'd also like for you to share in the comments if you experience similar symptoms, etc.