Friday, August 4, 2017

Diagnosed with a Genetic Disorder

I have defective collagen. That explains all my odd ailments. It is called EDS Type III, Hypermobile EDS, hEDS.  Whatever they want to call it, I can tell you
Ehlers-Danlos Syndrome Hypermobility Type 3 sucks.

I have arthritis that's degenerative in my neck & spine...but you name it, I hurt head to toe, even my toe joints hurt. I used to pop my ankles by rotating them every day. I used to roll my toes forward on the carpet to pop them. Now I know not to do that kind of stuff! I was stretching and thought I was helping my body but I was hurting it by somewhat dislocating joints. I was hurting myself in everyday life!

Turns out I've had the Hypermobility type of EDS all my life (that's why I was good in sports!) but the symptoms were bad and it is progressing - That's a positive sounding word for bad news.  I'm stuck in a catch 22....medicate the pain away (just masking it really) and increase the possibility I will damage my body without feeling it (yet), which will probably put me in an endless loop of pain management....or feel the pain and feel like crap all the time but not get addicted. I'm going for "choice" 2 because why ruin my liver and be an addict? I have enough troubles.

The arthritis pain has developed because of all the times I hurt my body and didn't know it. I am also in the quandary of - Do I keep my joints warm to help the arthritis? Because keeping the joints warm also makes them overly mobile, which caused the damage that caused the arthritis! Months ago I was in the ER and they gave me morphine. MORPHINE!!!! That was the only time in 5 years or so that I have been completely pain free and I think that was just an hour or two.

This condition is taking just about everything I have. It pisses me off so bad sometimes but I need to stay aware of negative or stressful stuff because...yes of course that makes it worse. Sigh.

"What causes it?"

It is genetic but there is no known causative gene for the Hypermobility type.

"Do I actually have Fibromyalgia?" I asked.

Not really, said the geneticist - But he said that putting Fibro on my new patient forms
would help providers understand how I feel  - Because EDS is still poorly understood by medical

"Doesn't skin need to be super stretchy to have this?"

Not necessarily. I don't have super flexible skin.  Now the experts think that many more people
who have FMS may have EDS.

"Diagnosis of Fibromyalgia or EDS...why does that matter? If they're both incurable, why bother?"

If you may have EDS, it is important to know what type. While I have the Hypermobility type, those with the Vascular type of EDS face a risk if sudden death due to aortic dissection that can usually be reduced with proactive surgery.

"My whole body is stiff and hurts. I really doubt I could be hyper mobile at all. I used to be very flexible and active in dance and gymnastics, but now I can barely move!"

The flexibility you had earlier in life IS significant. People lose range of motion with age and arthritis.

Thursday, July 7, 2016

People Pleaser

I saw therapist yesterday. I had decided to see her after my mom died but she also can help me with my ADHD issues, like an ADHD coach. This is 3rd time I've seen her &  the conclusion we came to is that I am far too empathic 
and think of others before myself...and that causes me stress and lack of self care. 

I think this stems partly from being a woman and partly from working in retail and always being Miss Customer Service. If a customer looked unhappy, I tried to get them happy! Omg!

So I am going to be on Facebook much less, don't worry. Every time I go online & see dogs shot in the face, hear about little girls being used as sex slaves by the I.S. etc - it all really weighs me down & I am unable to "fix" it so it is unhealthy for me. This may apply to you, too.

So today, I made some conscious baby steps toward improving my life. These will seem ridiculous to you probably.

I threw away good high value diaper coupons instead of sending them to a friend's daughter. That was actually kind of hard. There were two $2 Luvs Diaper coupons! I started to feel the urge to pull them back out of the trash can.

Then I had a big bag of plastic bags I thought the food bank could use. I threw those away. Nope, didn't even recycle the plastic bags.

It's ridiculous the amount of guilt. This stuff is basically trash.

Neither knew I had these things for them, and I didn't promise these. I just said to myself, "SELF! These are things on the wish I could list but you don't need this extra burden of mailing and delivering!"

I am that way online too, I catch myself making promises because ideas come to me. I've stopped myself from doing that lately.

Do you do this too? I guess I am too much a people pleaser. 

Tuesday, September 29, 2015

Get it done

I just made my mammogram appointment. I'll also soon have a colonoscopy. 

Someone needs to start a One Stop Medical Shop, where they just put your body on a lift like they do to cars at the mechanic's shop and do IV sedation, do teeth cleaning, remove wisdom teeth, tonsils, adenoids, perform EKG, mammogram, pap smear, colonoscopy, vasectomy, Lasik eye surgery, haircut & manicure/pedicure all at the same time. 

Just get it done. 90 minutes or less, get $10 off with coupon. 

Then, feed feral cats the tonsils & such. Nothing wasted. 

If you don't like my idea, you're just jealous.  If you need me, I'll be in Bay 2.

Monday, July 27, 2015

My current medications

70 mg Vyvanse in morning
20 mg Paxil in morning
Zyrtec at night if I remember!

I have Tramadol 50 mg on hand for flare ups. I can take up to 200 mg a day, but on my worst days I usually only take 2.
This is 4-7 days out of entire month. 

I have Flexeril for when I pull a muscle.

My health conditions, in order of awareness or diagnosis are:

Anxiety- thumb sucking 
Anxiety - fingernail biting
Trichotillomania (hair pulling disorder)
Allergies to fabric dyes, perfumes, environmental stuff.
Sleep Apnea, mild
ADHD Combined Type (had since childhood but didn't know)
Tinnitus (ear ringing)
Depression/Anxiety - diagnosis 
Casein (dairy protein) allergy, several weeds
Premature Ventricular Contractions

How much do you know about Fibromyalgia?


"How Much Do You Know About Fibromyalgia? 
Described by Hippocrates in ancient Greece, fibromyalgia is one of the world’s oldest medical mysteries. The disease – a complex illness marked by chronic muscle, tendon and ligament pain, fatigue and multiple tender points on the body – affects about 2% percent of Americans, most of them women. How muchdo you know about fibromyalgia?"

I wonder if grandmother had FMS...

I have been thinking about my paternal grandmother (my father's mother), and whether she might have had Fibromyalgia. 

She died in 1956 at age 66, so I never knew her. In her photos, even the photos of her when she was younger - show her as fairly large - as in width - for the times. 

I know she was somewhat of a medical mystery, and my father blamed "her quack doctor" for a lot of her health problems. I know that the cause of death on her death certificate was Athlerosclerosis (hardening of the arteries), and it came from poorly managed high blood pressure.

In her photos, she looks like a nice lady, but older than her age, and probably in pain. The look on the face is familiar. The look of pain, but trying to cope.

We blame many of our health problems today on our modern foods. My grandmother was born in 1890 or so. I doubt she ever ate a Pop Tart in her life.

Do I have proof she had Fibromyalgia? No. I wish I had some letters written by her - anything like that. But all I have are photos.  My father said she was very religious & her second husband was a rough character. So I can't imagine that helped her health very much.

Her daughter - my elderly aunt, has heart problems and terrible peripheral neuropathy. All related? I think so.

Wednesday, June 17, 2015

"Do you EVER stop talking?!?"

Sister said this to me, followed by an apology, and she said something like she didn't want my head to explode or anything. WTF.

Ok, sorry, I know I talk too much. 
I will just stop being nervous and having ADHD.  lol I'll get right on that.