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

Thursday, February 17, 2011

Frustration & scheduled PT eval


I've made a discovery about my health.  I think I've mentioned a few times that I have a hard time peeing and keeping the flow going.  It takes a long time in the bathroom just to pee.  Today I decided to try peeing in a different position.  I leaned forward between my legs and could easily pee!  I sat back up again and my flow stopped.  I leaned over again and wa-lah! I can pee again.  I'm not sure what that means, but at least I will be able to pee a lot easier now.


It's weird because I have friends on FB who dislocate major joints but still have an active life outside the home, and then there is me, who is nearly housebound with pain.  Of course, I don't take any narcotics, either.  I'm not saying that all active EDSers take narcotics, I know that they don't.  I just meant that having less pain would make it easier to go out.  I want to try a no more pill approach with reflexology, massage, reiki, and acupuncture (the electric kind that has no needles).  Of course since Medicare and Medicaid pay for NONE of these treatments I have to keep on dreaming.  Sigh!


I also did something awesome today that I'm proud of.  While I used to be able to run a couple miles a day, now that I'm badly disabled and can barely walk at all my goals have changed.  Today I walk 30 yards without a cane.  I was (and still am) very excited about this.  I am hurting bad from it now.  This is my first day out of a flare and I hope that walking today won't cause one.

I'm still having lots and lots of neck pain, though I am starting to get so used to headaches I don't notice them if they are low grade.  Of course, I am very aware of a medium grade headache, high grade headache, or migraine.  I added more to my Chiari page.  I added stuff about Tethered Cord Syndrome and a little more about Chiari because a lot of Chiarians also have Tethered Cord.  Remember, I do not have all the illnesses I am doing pages on (thank god!), I have H-EDS, Fibromyalgia, & CMP.  I suspect Chiari or CCI, but I do not have that diagnosis right now.  I have yet to be evaluated for either.  My hopes for this blog is that the readership will grow and other people (specifically EDSers) will have a place to learn about EDS and related health conditions all in one place.  Of course having any non-EDSers reading this blog is, too.  I hope to have my blog pages as a knowledge source for everyone.

I want to get a heating pad as soon as I can.  I have a $50 gift card from Target I'm getting from a survey site that really works (I've been doing it for years).  I still have more surveys to fill out first.  When I get my gift card, though, I plan on getting some heating pads online.  We don't have a Target in my town.

I scheduled my PT evaluation.  I want to find the right material to give to the physical therapists.  I hope I get to do pool therapy again.  Last time they said I only needed 30 days of physical therapy.  They canceled once because of a thunderstorm.   It's an indoor heated pool but for liability reasons the hospital doesn't do pool therapy when it is thundering.  We also had Thanksgiving that month plus I was too sick to go twice.  That meant of the 30 days (eight appointments) they scheduled me for I got four.  

I am really freakin' frustrated that my doctor refuses to admit how much EDS effects my life.  She still thinks fibro is my main problem.  This is my rheumy I'm talking about.  The geneticist diagnosed me as "HMS or EDS hypermobility type."  To her this means HMS.  She doesn't realize that HMS and EDS are the same thing.  I have a lot of "normal" EDS symptoms.  Writing EDS on my medical records will get me to services and stuff that I won't be able to with the HMS label.  I see Dr. W. in St. Louis next month and she will be giving me an official EDS dx.  My rheumy also don't realize how much my EDS hurts.  I think even DH doesn't realize the extent of how much it effects my life.  It effects it in many ways, not just pain and unstable joints, though that is a really, really big part of it.  I don't think he really truly understands what EDS does to someone's body.  I know he couldn't because I learn every day about it and still don't know it all.  He doesn't belong to a bunch of EDS groups, like me, so no way could he know it all.  That's understandable.  He isn't an EDS researcher or even a doctor (though he is smart enough).  I do wish that DH learn more about EDS.  It may seem like I complain a lot, but no one knows how often I cry in pain, or how picking up the milk jug subluxates my wrists somedays.  I know that I cry a lot and I sure feel like I complain a lot.  I feel lucky that my wrists don't dislocate (yet), or any major joints, and I'm scared of when it starts happening.  So far I've only dislocated a finger, the tip of my thumb, a small bone in my foot (both sides), and...I think that's it.  I've subluxated many,  many joints on a daily basis.  I subluxate more all the time and I only started dislocating in the past year.  It scares me.  Does that make me wimpy?

1 comment:

  1. Interesting discovery regarding your urinary problems! I know you wrote previously that you ruled out prolapse, but this makes me wonder if you might want to put the idea back on the table? If you recall our conversation a few weeks back, I recommended trying a few different positions to see if it changed your flow. Positional changes like this can be indicative of there being a blockage caused by incorrect organ positioning. The positions I recommended may not have helped, but you have found one that does, so there is a chance prolapse is still an issue. The position you describe is actually one that worked for me as well, during the early stages of my prolapse, when it was just my bladder, and not my bowel and uterus also. You should definitely try to get in to see a uro-gyn specialist to figure out what the problem is, before it gets worse!

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