New Series…yup – another one! Malady Mondays

Don’t worry – I won’t be whiny…at least I will do my best! Basically, I know that there are people out there who happen to be interested in how I am doing, and this is an easy way for me to keep everyone up to date, more or less. It also keeps my personal health drama reigned in to just one post a week.

Since we have so many balls in the air, I have relegated each ball to one day per week, and filled the gaps with allotted posts for the silly, the random, and/or the (hopefully) inspiring.

I will let you know if anything worth sharing happens during the week, and mention any new diagnoses we have thrown our way.

To quickly catch you up to date:

I was diagnosed with Hypermobility Syndrome when I was about 13 (20-ish years ago)

Then came all of the itis-es –  inflammation of the: (I’ll group things in category rather than chronologically)

  • tendinitis (tendons/wrists)
  • possible arthritis (fingers/hands)
  • Gastritis (lining of stomach)
  • interstitial cystitis (lining of bladder)
  • costochondritis  (junctions where the upper ribs join with the cartilage that holds them to the breastbone, or sternum)
  • plantar fasciitis (bottom of heel)
  • encephalitis (brain)
  • meningitis (tissue covering brain and lining spinal cord)

Joint Problems

  • bunions 
  • pronated ankles
  • hip pain
  • knee pain
  • shoulder blade pain (left side)

Postural Orthostatic Tachychardia Syndrome (POTS)

  • heart rate jumps up when I stand up
  • blood pressure goes down
  • long list of other things…don’t feel like listing at this point…

Random other stuff we aren’t sure how to categorize yet:

  • dishydrotic exzema
  • IBS
  • Lactose Intolerance
  • difficulty breathing
  • compulsive cough
  • fibromyalgia
  • insomnia
  • difficulty sleeping/waking rested

Can you imagine why most people with EDS or POTS get called hypochondriacs?

All of this led us to suspect and research Ehlers-Danlos syndrome. I am on a waiting list to be seen by the genetics department at Johns-Hopkins. It has also led to me visiting a cardiologist, pulmonologist, geneticist, and probably several other “ists” before all is said and done.

Aaaaaaaand it led to THIS:

photo (8)

AAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!!!!!!!!!!!!!!

Just kidding. It’s just a sleep test. This is what I did Saturday night. Woohoo!

The room was lovely. Serene, calm, totally inviting for a restful night…

photo (7)

Until they start hooking things up to you!

I had what seemed like a million sensors of various types all over me. My legs, head, chest (bc I still had to wear my heart monitor), neck, face, NOSE – and  a giant elastic band around my stomach and chest, then an oxygen monitor on my finger.  Oh – and a camera videoing your sleep all night.

Ok! Now, just go right to sleep, dear.

lol. I felt like ET.

So far, all I know from this experience is that I don’t have sleep apnea bladly enough to need a CPAP. (YAY!!! Something I DON’T HAVE!!!)

Ok, well, no April Fools jokes to hand out today – just a photo of a fool to make you chuckle! I know we all did. 😉

Maybe next Monday I will have a bigger list of things that I DON’T have that I can share with you. Just waiting on the results!

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