Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Friday, February 12, 2010

Why can't I be taken seriously?

Well I saw my new rheumy Wednesday, which I also blogged about in my fibromyalgia blog, "'Fibro and CFS don't occur together' Whaaat???"

I was concerned with the doctor told me she didn't believe that FMS and CFS can occur in the same person.  I was a bit more concerned when I told her I have EDS and upon asking my type, she smiled and said "Oh me just call that hypermobility around here."  The unspoken, yet obvious words were "it's no big deal."  Yes, it is a big deal to me.  I think my EDS deserves a doctor to consider it when treating me.  I think my EDS deserves a doctor telling me about it.  Instead I was told by the geneticist that I have hypermobility, the least serious type...and that's it.  I realize that V-EDS is the worst and it shouldn't even exist in a perfect world.  No one should ever have to die from it again.

I still think that my H-EDS is something other than "no big deal."  I want to scream that it sure feels like a big deal to me, dumbo!  (I'm not sure where "dumbo" came in, it just seems to go good at the end of that sentence.) I want to be paid attention to.  I am not a hypochondriac, I have real conditions.  I am not a hysterical woman.  I am not being taken seriously and I'm angry about it.

She is the third rheumy I've tried and my fiance thinks we should just stay with this one because at least she is giving me the proper medication for my fibro and a script for physical therapy.  But what about my EDS?  It isn't as severe as a lot of people's.  I am in constant pain (and on constant medication for pain) but I don't think I've dislocated a large joint, only small ones and subluxated large ones.  So I know it could be a lot worse.  I also know as I've gotten older it has gotten much worse.  I don't know what to do.  I am exhausting the doctor supply! LOL  I really am at a point where I just don't know what to do.

Saturday, February 6, 2010

EDS days...Pain & Chocolates

Last night I had a truly painful shoulder subluxation.  Jim and I were trying to get Niki, our kitty, from behind a box in the "smoking room."  While he pulled the HUGE (and might I add really heavy) box back I reached down to grab Niki and pick her up.  When I did that I felt my shoulder move out and OMG I screamed.  I screamed and said every curse word I know, probably waking up the neighbors.  The pain was absolutely horrible.  I am getting more and more subluxations lately and my health is declining rapidly.  I am afraid that it is only a matter of time before the frequent subluxations turn into dislocations.  Jim was trying to help me pull my shoulder back into place while my nose was running and mixed with the tears and I was screaming.  It wasn't a pretty site!

I don't think someone without chronic pain can really understand it unless you've been there.  There have been times I wanted to die because I couldn't face anymore pain.  Knowing that I am loved by Jim and our kitties is sometimes the only thing that keeps me sane.  Seriously.  I've been in so much pain before that I have literally seen swirling spots in the air.  At that point the pain is all consuming.  It hurts to exist.

I don't know what I'd do without the friends I've made on Twitter, Facebook, and writing snail mail letters.  To any of my pals reading this, I really love you guys.  I can't make it out of the house often, a trip to Wal-Mart is a big deal and it is so hard to make it to Mass, which I really miss.  I want to make an appointment to talk to the priest, but I have to be in good enough condition to leave the house that day.

I'm going to have to drop out of school, I was going for my Master's in Sociology with a graduate certificate in Women's and Gender Studies.  I can't make it to class because of the pain and the last class I made it to I had a seizure in.  They weren't listening to me protest going to the ER by ambulance and in the end I was too out of it to argue.  I've had enough seizures that I don't need to go to the ER for just a single seizure.  It isn't like it is something new.

I also don't know what I'd do without Jim.  He's the love of my life and my anchor when I feel like the pain is sweeping me away from the shore.  We celebrated Valentine's early today. ♥  He got me two heart pillows, one big and red and one medium sized and pink, Ferrero Assorted Chocolates (Rocher, Ferrero Garden, & Rondnoir), a warm fuzzy heart patterned fleece blanket, and matching heart mugs.  He also got me a lovely card.  I really am blessed to have someone who loves me so much and I love him.


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