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) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ High Cholesterol

Friday, November 6, 2009

I'm 28 going on 68. How do I get my hands on a walker?

After all of the excitement I had yesterday morning to go to Water Therapy, around noon I was hit with horrible pain.  I'd put yesterday afternoon on a 1-10 scale as a 9.  I couldn't walk.  Jim had to help me to go to the bathroom.  I had to lean on him and my knees gave out numerous times.  My left wrist hurt so bad that I couldn't use my left hand, it didn't work much.  I stayed in bed for the rest of the day, on pain killers and muscle relaxers. Getting up to go to the bathroom seemed an impossible chore.  I really need to get a walker for days like that but I don't know how to go about getting one.  I also need to get one of those old people benches for the shower.  It hurts so bad to take a shower and stand for that entire time.  I feel as if I'm not 28 but 68.  I feel 40 years older than what I am.  That night I finally figured out how to put my wrist back in place and since then I can use my left hand.  It was dislocated, which was why I couldn't really move it.  I am not sure how I put it back in place though!  When I called the physical therapy department at the hospital to ask if I should still go I ended up breaking down in tears because of the intense pain.  The water therapy therapist called me later and I was trying so hard not to cry form the pain.  Today (so far) I feel better than yesterday afternoon/evening, but I'm still 7 on the 1-10 scale.  I'm praying I don't get back up to a 9, or worse yet, a 10.

Monday, November 2, 2009

Tomorrow is finally THE DAY for WT

I'm so excited, tomorrow if finally THE DAY that I'll get to go to water therapy.  My case worker is driving ahead of us to show me where the place is, there aren't any thunderstorms predicted for tomorrow, and I already got a reminder call!  I'm so excited!  My three week flare is also over.  Now my pain is a 4 on a scale of 1 to 10, which is really good!  :-)

Thursday when I saw my therapist (the MSW kind) I ended up having flashbacks in the waiting room and going outside.  I've  been having more and more flashbacks lately.  I heard once that when you are having a lot of flashbacks it sometimes means that you are facing more of your past because your brain feels strong enough to do so.  I think that it could be true.  I know I have blocked out things only to relive them in flashbacks years later, over and over again.  I guess you can't work through them until then.

I got stamps!  Yay!  I'm really excited because now I can finally mail a lot of the envelopes to pen pals I've needed to mail for over a week.  Another reason I'm so excited...we got Christmas Cards!  Yay!  Happy Christmas (almost)!  :-D I want to get them out the beginning of next month.

Okay does anyone else get really annoyed at the Progressive commercial lady?

I'll write more later!

Wednesday, October 28, 2009

Paddling on by...where IS that place?

Well Tuesday I didn't get to go to water therapy. We are so broke right now that we had to return the espresso maker to Wal-Mart to have the gas money to get to therapy. While my fiance was in Wal-Mart I called the Physical Therapy department at the hospital and they told them we'd be ten minutes late. So once we got on the road (the place where water therapy is held is a bit out of town) we couldn't find it. We drove and drove and finally I called again asking them for better directions. She told me that the therapist had waited half an hour and left. Dammit. I had realized how long we'd been searching for this place. So on the way back from the middle of nowhere we thought we slow down and find it so it would be quicker Thursday. We still didn't see it. Now I have three options: to believe that Jim and I are blind, that the place doesn't exist (or at least in this dimension), or the lady can't give directions to save her life. I'm hoping that it's the third one. So tomorrow I see both therapists. I see the psychological therapist (she's a MSW) around noon and the water therapist later that afternoon. I'd say busy day so I'll get some sleep but I know that isn't true...I just started a new book! :-)

Sunday, October 25, 2009

Lightbox: a box with lights in it

This morning I woke up in PAIN.  Yup, the all caps, bold print kind of pain.  Right now I'm sitting in my desk chair with the vibrating chair pad over it.  It always seems like while it helps, the bumps in it also hurt.

Friday night was a bad night for me.  Since the it gets dark earlier than it did my Seasonal Affective Disorder is kicking into overdrive.  I'm not sure if that has to do with the paranoia and fear I had Friday, but I will have to ask my pdoc about it.  I'm supposed to be getting up at seven o'clock in the morning and using my lightbox for an hour.  Seven o'clock is really early when I can't sleep until one o'clock in the morning on a good night.  On a bad night if I fall asleep I do around four or five in the morning.

For those who are not familiar with a lightbox, mine is literally a wooden frame (box) with bulbs in it.  Hence, a lightbox is exactly what it sounds like.  It is used in the treatment of Seasonal Affective Disorder.  Mine puts our 10,000 lux, and from what I understand it is a very good lightbox.  I sit about twelve inches away from it and either stare toward the bottom or I read a book with the book and my eyes at such a position that I'm still getting the light into my eyes.  It does give me a headache, but it also really helps with the S.A.D.  It has a warning on it to not wear sunglasses while using it.  That warning is for the same people that need instructions on deodorant to apply daily and on the Pill to tell them it doesn't protect against HIV and other STDs.

So, I've taken two pain pills, half a muscle relaxer, some Excedrin, and am on the vibrating cushion chair.  My shoulders are really sore as I awoke with one subluxated, which means that the joint was partially dislocated.  Dislocations and subluxations are common with Hypermobility type Ehlers-Danlos Syndrome.  As I mentioned before I have been diagnosed with Fibromyalgia and Hypermobility Syndrome, but it is suspected that I have Hypermobility Type Ehlers-Danlos Syndrome (HEDS).

To explain about HEDS I'm going to add a quote from Wikipedia's article on Ehlers-Danlos Syndrome.

"The major signs and symptoms [of HEDS] include:
Loose, unstable joints that are prone to: sprains, dislocations, subluxations (partial dislocations), and hyperextension (double jointedness)
Flat feet
High and narrow palate, usually resulting in dental crowding
Easy bruising
Velvety-smooth skin
Muscle weakness, often made worse by cold weather
Early onset of osteoarthritis (usually develops in mid-30s)
The pain associated with this condition is a serious complication."

With each one of my blogs I'd like to mention another great blog.  Today I'm going to suggest Girl Interrupted - A life with fibromyalgia.  This blogger, Dreamweaver, has a fibromyalgia blog with a sense of humor.

Until next time, your own Lady of the Ozarks.

Thursday, October 22, 2009

Introduction and useful links

I guess I'd better introduce myself first.  My name is Amy and I am a Survivor.  

I am a chronic pain survivor.  I deal daily with chronic pain that is often completely debilitating.  I have been diagnosed with Fibromyalgia and Hypermobility Syndrome, which is possibly Hypermobility Ehlers-Danlos Syndrome.  Today I visited the physical therapist for an evaluation.  He said that if I started out in the PT room we'd be doing more harm than not.    So...I am going to do water therapy until my joints are strong enough to use out of the pool.  Yay!  I'm very excited to finally get to do this.  

I am mental illness survivor.  I have the diagnosis of bipolar disorder.  That means that while everyone has ups and downs in life, mine are extreme to the point where the greatly interfere with my life.  Working for years at it, my bipolar is pretty much under control, though I tend to be depressed.  

I am an abuse survivor.  I have been emotionally, physically, and sexually abused in my life.  

I am incredibly honest and I welcome comments.  My blogs will usually be longer, but today I just wanted to introduce myself a bit and to post some great links.

These links are to websites, blogs, and youtube channels that explain all of these better than I could.

Ehlers-Danlos Syndrome Symptoms due to collagen disorder

Ehlers-Danlos Syndrome Mayo Clinic

What Is Ehlers-Danlos Syndrome?

EDS: Ehlers-Danlos Support Group

HMSA The Hypermobility Syndrome Association

NIAMS Fibromyalgia

National Fibromyalgia Association

Fibromyalgia Mayo Clinic Fibromyalgia and Chronic Fatigue Syndrome Chronic Pain

My Life with Ehlers-Danlos Syndrome
Our Journey with Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome -> Tammy's Story

Ehlers-Danlos Syndrome-Deal With It

YouTube Channels:
Rockerchick76's Channel

BuddyBoy091994's Channel

angelEDSer's Channel

ufo8mykat's Channel

Please feel free to subscribe to my blog, subscribe to me on Youtube, or to follow me on Twitter.


Related Posts Plugin for WordPress, Blogger...