My 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 With Psychotic Features ~ 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) ~ Self-Harm ~ Bilateral Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ Eczema

Saturday, March 20, 2010

"I'm Frightened"

I've been putting off writing this blog for obvious reasons.  I'm frightened.  My health is deteriorating so rapidly and I feel confused and scared.  I don't know what is going to happen to me.  I'm grieving the loss of my health, but as it declines I feel I am lost in more grief as I fall down a bottomless pit.  The pit is dark and there is nowhere to hold on.  When I do find a place to hold on it hurts too bad to do so, so I continue free falling.  I'm tired of people telling me "it will get better," when I don't know that that is at all true.  I know that some days are better than others, but will it ever "get better?"

Three days ago something very scary happened.  I couldn't put any weight on my right foot without my ankle slipping out of the joint.  I can't get it back in by myself, so I had to lie in bed and have Jim jerk as hard as he could on my foot until we both heard and felt a snap and then the bones moving into the joint.  The reason that scared me so bad is I was (and still am) afraid that may be the first step in many to being wheelchair bound.

I think that day Jim finally got it that things may not get better and a wheelchair is possible in my future.  I asked him if I end up in a wheelchair if we could make the chair pretty.  He promised me I'd have the prettiest chair in the world.

I have to admit that lately things like traditional wheelchair vs. a scooter and ramps have been in my mind.  I try not to think of them too much, but I still do think of them some.

I don't know where I'm going but I'm afraid I'm getting there too fast.

Monday, March 8, 2010

The first warm day of 2010

Ahh, the first day you need air conditioning.  It takes me back to a time when things were simpler, well some things were simpler.  Today I am reminded of lazy summers filled with swimming at the river and jogging laps around our trailer.  I used to do a lot of crunches and lunges every afternoon, summer was the best time to exercise.  There is something renewing about summer sweat.  I can still smell the grass and dirt, when I used to play with Togy.  I'd play tug-of-war with him until we were both exhausted; then I'd lay in the cool grass while he'd lay next to me.  There is something about the first warm day that brings back a lot of good memories.  At the same time I remember the good things I do so in a wistful manner.  The times of waking up knowing that the day is mine for the taking is over.  Now I wake up with the knowledge that I'll be in pain today.  Some mornings I wake up hoping for a low pain day, while other mornings I wake up from pain.

I guess today I'm a bit depressed at what I used to have.  I know I should be thankful that my new fibro medicine, Lyrica, seems to be working, and most days I am very grateful.  That doesn't mean my pain is gone, though.  I have less bad days, two or three a week rather than six or seven a week; which I am thankful for.  Most likely I will feel better later today after a shower and my tramadol kicks in.

I am just slightly concerned about a lump in my neck that I've had for four years.  Doctors dismiss it but I think it's slowly growing and I wish someone would just look at it.  It's kind of annoying.

I do have an appointment with a new rheumy, one that comes highly recommended for EDS by a friend on Facebook.  I hope that goes well.  I would like to get custom braces.  That would be really nice.

I'm sure this mood will pass shortly, but right now...


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