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 ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Saturday, April 10, 2010

Forecast for today...pain reaching far beyond the horizon

When I have a good day there is a small part of me that hopes there won't be any more bad days following it.  Then when the pain comes back full force I feel like I've been smacked in the face, though if you were to take that simile literally a slap in the face would be a tiny, tiny percentage of the pain.  I can't blog long tonight because it hurts to move my head, I've got a lot of pain in the vertebrae in my neck.

I don't want to be thought of as negative, but I don't think that I'll be lots better.  Yes, the geneticist told me to exercise.  He also told me to hire a personal trainer.  Mmm hmm.  I feel like screaming when I think of him.  I can't walk without a cane but I'm supposed to hire a personal trainer?  I don't have money for that even if I wasn't in debilitating pain.  I don't need a personal trainer, I need a physical therapist!

Sunday, April 4, 2010

EDS babies II

I've still been thinking a lot about having a baby.  I would have to go off all of my medications for the whole time we were trying to get pregnant and then through the pregnancy and if I decided to breastfeed.  I might not even be fertile, as my PCOS (Polycystic Ovarian Syndrome) and hypothyroidism can both cause infertility.

After all of that, assuming I could get pregnant I have to consider passing down my EDS and my Bipolar.  I also have to worry about problems during pregnancy because of the EDS and I'm at a higher risk of gestational diabetes being overweight and having PCOS.

The remaining option to have children would be adoption.  My therapist I see for my Bipolar and PTSD also works as an in-home inspector for families who want to adopt.  She told me that Jim and I would not pass the inspection because of our health problems.  If I cannot lift a baby how could I care for her?  If Jim and I are both having seizures then how could we care for a baby?

I've always wanted children.  I feel as if my health problems have cheated me out of an important part of my life.  I can't help but thinking it isn't fair.  I have a lot of love to give, as does Jim.

What happens now?

Friday, April 2, 2010

When I fall apart do I duct tape or super glue?

Ah, I'm still having problems with my feet.  A bone in my left foot is dislocating.  Something as simple as rolling over in bed without letting my foot touch anything can dislocate the bone.  I joke about duct tape, but when band aids pull off skin and lead me bleeding I think that means I should only consider duct taping as a last resort.  I did buy some sport tape but I don't really know how to wrap my foot with hit.  I am going to look it up on Youtube.  I just don't know if I should give it a practice run when my foot isn't hurting.  Taping wrong and having to undo it doesn't sound fun right now.

I took a hot shower this evening that felt so good.  I have a chair I use to sit in while taking a shower.  It is a lawn chair, one of those folding types.  It is really comfortable and much better than my head swimming and holding onto the shower wall trying to balance while standing on no feet.  I still haven't figured out that feat yet.  Pun intended.  lol

I went to the doctor to get a referral to a cardiologist because I want to be checked for POTS and for Mitral Valve Prolapse.  I at least want a real doctor to take a history and run some tests.  My personality clashed in a major way with the physician I saw at the doctor's office.  I usually just see whoever I can get in with.  They all suck over there.  I asked for a cardiologist out of town.

I've been taking a lot of falls lately due to pain, foot dislocations, seizures, dizziness, and once, passing out.  So that isn't too cool.

I am trying to take things as they come.  Sometimes it is really difficult and sometimes it is not quite as difficult. Sigh.

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