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)
- 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
- Lactose Intolerance
- difficulty breathing
- compulsive cough
- 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:
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…
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!