Irene’s Transverse Myelitis Blog

July 8th, 2008

JANUARY 6, 2008

Having two new caregivers Alicia and Marla…….Marla had no experience and left me a noon.  Alicia  left me fall on a transfer to the electric chair this was at 11:oo AM.  Another caregiver started  Crystal and she dropped me at 3:00 PM.  My neighbor and friend Bob Prunty helped get me off the floor onto the chair.  The results of these falls were terrible soreness spinal area and the right hand which was open, now closed. I also lost the power of the pinch rendering me almost unable to feed myself.  This was a big step backwards.

JANUARY 7, 2008

The results of the falls have me so sore I slept most of the day.

JANUARY 9, 2008

Still very sore, in a panic I took my squeeze ball and ace bandaged my hand at night.  This worked to keep the fingers somewhat open but the pinch and power to hold things is not there.

JANUARY 10, 2008

Dr. Cibik acupuncturist  does not use massage therapy. He uses heat lamps and much smaller needles.  These needles do not hurt much going in.

JANUARY 11, 2008

I am sore from the acupuncture treatment.  Hand remains the same. Woe is me as I have lost what I gained.

JANUARY 16, 2008

Not feeling to bad, soreness mostly under the coccyx.  Results from the fall shows my one foot has now lost swelling and bruising discoloration is clearing. Hooray for that.

JANUARY 17, 2008

Dr. Cibik for acupuncture treatment.  He found a new place to put the needles, by my toes. One under my nose and one on the top of my head in the crown area.

JANUARY 18, 2008

Feeling sore and tired.  My friend Lynn stopped in and boosted my spirits.  I needed this.

JANUARY 22, 2008

Looking for a good neurologist in Pittsburgh area.  I called Dr. Susan Basser, she referred me to a Dr. Rana who in turn referred me to Dr. Scott.  I will not see Dr. Scott because he told me early in this disease stage he did not what to do for me.  As of today, I am still looking for a good neurologist.  I hurt everywhere now.

JANUARY 23, 2008

Upon waking I am very still all my extremities are aching as if I now have the flu.  Right and left side of my neck is very sore.

JANUARY 24, 2008

Temperature outside was only 17 degrees with a wind chill of  3 degrees so I cancelled my appointment with Dr. Cibik.  Even today my pain continues.

JANUARY 25, 2008

All night having much pain in the anus area and couldn’t move my bowels.  I used the chinese castro oil  treatment they had given me to take home.  It did help and then we could not get them to stop.  I had this condition most into the night and the next day.  Not wanting to dehydrate I took immoduim which after 4 doses stopped the condition.

JANUARY 26, 2008

So tired from the day before. I slept most of the day and most of the evening.

JANUARY 27, 2008

Back on schedule and not quite as sore.  My caregiver help me do my daily exercises which I had let slip.

JANUARY 28, 2008

My butt area is still hurting. Having trouble holding my glass and silverware to eat.  I am on 3 Advil day (anti-inflammatory pill) for the swelling in my left hand from infiltrated I.V. from China wrapping and elevating it did not help.  Both hands are opened only 80%.  I do not have the power of the thumb to hand pinch pain continues Lyrica doesn’t touch it.  Appears to control spasms only.

JANUARY 29, 2008

As the pain continues I now have it at the base of the neck to the crown of the head.  I have had this pain since Dr. Cibik put needles under my nose and the top of my head.

JANUARY 30, 2008

Cancelling appointment with Dr. Cibik still not feeling well. I do not know if this is making it worse…no pain til the needles were put in my head. The pain is still stabbing and throat is sore and dry.  I can not hold utensils well.

JANUARY 31, 2008

Incontinence and constipation continues.  Stabbing pain to the head seems to have decreased but there is a soreness to the crown of my head.

February 1, 2008

My caregiver Mary notices I now have two knuckles showing on my hand.  However, I now have no control over my left arm and am having extreme difficulties holding utensils.  My sister, Adeline bought bigger rubber handled utensils and my girlfriend bought me grip gloves but  neither are helping much.

FEBRUARY 2, 2008

One severe spasm in my neck. It is excruciating my care giver Mary grabs my head and starts massaging.  She puts me back in bed and I put the  heating pad on it.

FEBRUARY 3, 2008

My caregivers are getting the cold/flu and with all the illness around me I found myself in more pain so I took 150 mg of Lyrica to sleep.  The crown of my head feels like someone is pulling my hair. It is so sensitive. My butt area is aching.

FEBRUARY 4, 2008

Cancelled appointment with Dr. Cibik I was very cold and feeling sick.

FEBRUARY 5, 2008

My caregivers are back on schedule and have recovered from their sickness.  Because of this my nerves are much better.  No pain in the head today.  Again my chinese castrol oil constipation treatment was given and helped give me some relief.  I was able to sleep for the first night with no pains shooting in my head.

FEBRUARY 6, 2008

Pain in my neck came back but it is not shooting to the head.  Left side of  the shoulder and neck I have started to get itchy and under my chin.  Oddly enough my left arm aches at the top of the shoulder and into the left elbow.  This is the area where Dr. Martin and Dr. Cibik inserted the needles.

FEBRUARY 7, 2008

I called Dr. Grumet, my pcp, for a referral of neurologist.  Dr. Wiseman, of the Pittsburgh Neurological Association I had gone to very early in trying to get a diagnosis of my condition.  He missed the diagnosis on the onset of my condition.  Even though I had gone to him for approximately 6 months I am having trouble getting my records and CT scans, which were done in his office. Insurance papers prove I was there and had these done but he has lost my records.  I am still looking for a good neurologist.

FEBRUARY 8, 2008

My sister, Adeline calls with a new referral from Dr. Amit Gray, Cleveland Clinic for Dr. Rock Heyman in Pittsburgh.  I called and have an appointment for October 31st.  Through the night I had extremely bad pain again in entire body.  I am in spasms and continual aching in the butt area.  I put bio-freeze on it and it didn’t even touch  it.  I took an extra Lyrica which helped me sleep a little.  My pain in the butt area is unbearable.  I am able to doze off but feeling very tired today.

Entry Filed under: transverse myelitis,Uncategorized