Today is

Hi; My name is Sandy and I live in Holland, Michigan. I was diagnosed ( double tested thru Mayo Clinic,test were sent there)

Feb.8,2009. My story is very long so the short version for now. Back in 1994 I was in a bad car accident and had back injurys.

After trying pain pills, therapy, ect I went to a large Pain Clinic. After medications did't work they implanted a Morphine Pump into the spinal canal to control the pain. 2 yrs. pass,emergeny appt. with Pain Dr. found granduloma's on my spinal cord. In fact they mygrated 9" up the spinal cord, the spinal cord specialist took out all me could-or dared. He went as far as the lung nerve function would be affected. I've been on anti-inflamitory meds and Medro shots in the spinal cord dura since1997.

Fast forward.. I have been on tons of medication, lots of hospital stays...now everything makes sense.
There was ONE reason (I find out now) all this stuff was going wrong.

I'd really like to connect with others, expecially from Michigan!!! My e-mail is jsdewys@yahoo.com. I am not very computer educated. I know how to e-Mail and look things up but that's about it. The following is a long..list of my symptoms or problems that I have. In no paticular order.
Sleep problems
Purple stretch marks
Muscle spasms
Restless leg syndrom
Mouth gum recession
Mouth sores-Lichen Plantus
Back tissues swelling ( Buffulo Hump)
Falling Higher blood pressure than normal all of a sudden Lymphedema
Knee Pain Bursitis
Pubic and underarm hair dissapear
feeling Ill-flu like all the time
Cateracts
Slow healing
Poor veins, hands,arms
18" lg. bowel removed(died)
Foot Neuroma
Shingles
Stomach pain
Urination problems
Excess sweating-dripping wet
extream fatigue- muscle soreness
Bloated feeling
Facial Hair
Osterporis
Bruse easily
vaginal problems (dry-painfull sex)
Pain in forhead(middle)
Migraines
Darkening of skin
uncontrollible pain( Roxenol,morphine,dilidid didn't help)

Did the blood ,24 hr. urine, and salva test (send to Mayo clinic for diagnoses) done 2 times because my Dr. said,"you don't have that, quit looking up things on the net." My morning blood draw was 1.7micrograms. my night was 19 micrograms "

no wonder I can't sleep. My husband and son have been there 100% all these years. I have however lost the closeness of a mother/daughter relationship with my daughter. She thinks I'm nuts, faking + many more discriptive words.

Being diagnosed has been on "ah ha moment" being started on hydrocortisone is a roller coater ride. Up ,down, uncontrollible pain. but as I bio said, all this and I'm still alive.

Sandy DeWys Holland, Mi jsdewys@yahoo.com

I too read many of the Bio's with held breath, tears flowing, from the storys that now were bringing so much sense.

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She also submitted this:

Hi, I'm Sandy DeWys from Holland,Mich 49424 My story begins when I had a car accident in 1994. I had back injuries,sent to a Lg pain Practice, doing epidurels into the spine .

In1996 I had a morphine pump im planted into the stomach with tubing going directly into the dura matter right next to the nerves. :fast forward.2 years..Had an MRI where they found granduloma's covering the Dura mater 18' up the spinal cord. Had more surgery ,to take the morepine pump out and try to get as many granduloma's out as they could. I had to walk with a cane because of nerve dammage. Had lots of Pain Meds, including Dura Morph injections and trigger point injections..fast forward to now:

Been diagnosed with cushings(steroid meds caused and extream pain depleated the adrenal glands. Started on hydrocortisone pills. The roller coaster begins.

The ups and downs I never expected this. I just can't believe the Dr.s didn't catch this before, with all the symptoms that I have.

My husband and my son are my rocks. I regreatfully say I lost my mother/daughter closeness, my daughter thinks I'm crazy, and is very imbarrised that I use a cane to walk.

She's 27 and has her own house now. I've been in a Pain support group for over 10 years. I can't tell you enough how important that was to keeping things in perspective.

Just being able to talk to someone like yourself. I learned a lot of tricks to the medical situations. What to do,what to take along. The BEST thing I learned was to make a notebook with all your records in one folder. To have atyped list of medications, so you can just hand it to someone when needed. I color coded mine to match up Dr.s with which medications. They tell me it's most helpful.

This site is just AWSOME so much information. You did a GREAT JOB when you set this up.
Thanks again;
Sandy DeWys
odd things, but the Drs. treated them one by one.

Ater going thru the cushings pages I find I have a host of symptom's, some are really strange that cortisol would cause. No special order;
Sleep problems
Darkening skin-looking tan
Uncontrolled pain-more than normal
Pain between eyes-forhead
Vaginal problems
Bruse easy
Osterporis
Anit-inflamatory meds-steriods
Facial hair
Bloated feeling
extream fatigue-muscle soreness
Urination problems
Stomach pain on and off
Shingles
Pubic and underarm hair disapear
Lymphedema
Foot Neuroma 18" of lg. bowel died
Spider veins
slow healing
Cateracts
feeling Ill/flu like
Skin tags Red moles
Bursitis
higher blood pressure than normal
falling for no reason
Back tissues swelling(buffulo hump)
weight gain unexplained
Mouth sores-lichen plantus
Mouth gum ression teeth spreading
Restless leg syndrom
Breast tenderness
purple stretch marks
sleep problems Lethargy-lack of sleep
Snoring
Exhaustion after ninimal effort
hard to urinate
Irritable bowel syndrom
Edema
Gum problems-bleading
fingernails peal
increased gray hair-all at once
sweaty skin slow pulse-shallow
dry vagina-painful intercourse Low sed drive
larger feet-larger shoe size
spacing between teeth
skin tags
red blood moles
swelling/hands-feet
blurred vision
Low blood pressure
Heart Palpitations
Anxiety
feeling of dread
puffy eyes eye
discomfort-itching

Email Sandy

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