Archive for July 8th, 2008
DECEMBER 12, 2007
We are currently recovering from jet lag…….we had a very long trip home. I was able on the plane to use my hands so different from when we went over my sister had to cut my food. God’s mercy for these miracles.
DECEMBER 13, 2007
I know have found an acupuncturist, Ted Cibik of Inner Strength from Leechburg, Pennsylvania. This is only a few minutes from my home. My first visit will be consulation only. We have the pictures of all the excerises Dr. Martin was doing. Also, we have taken pictures of where the needles were placed so we have some map of treatment for his guidance.
DECEMBER 14, 2007
A confusing time with Dr. Cibik……..he wants to take alkine down to PH level in urine and I was unsure what to do. I tried calling China but could not get through. I do not want anything to annoy the stem cell growth that I am seeing each day make changes in my life.
DECEMBER 15, 2007
Again I tried calling China but could not get through. I called our liason Kirshner Ross-Vaden from Plainesville, Illinois……..told me to go ahead. She said it would definitely not effect the stem cells growth.
DECEMBER 16, 2007
Today, Dr. Ted Cibik started me on L-Arginine 500 mg, two tablets, three times daily. I feel I am in good hands.
DECEMBER 19, 2007
No improvements until today. I have much more strength in picking up a glass or a cup……….now half full and I can pick it up with one hand. This is quite an improvement with hands that were not useful at all.
DECEMBER 20, 2007
I am smiling as I can now wrap Christmas presents…..and I do wrap 26 in all. This is unbelievable. It will be a Merry Christmas for me.
DECEMBER 21, 2007
Today is my first acupuncture session with Dr. Cibik. He does no massages or exercises…..but uses inserted needles with heat lamps. He comes in every 15 minutes and sprays them with something. I am concerned as some of the needles fell out before the time was up. He told me that was OK. We shall see what this brings to me.
DECEMBER 23, 2007
I had company all day yesterday. Today I am in the standing frame for 20 to 25 minutes and this feels good. I did try to chop an onion for cooking but my grip gave out before I was through. I do not know what this means……we shall see. All in all I do feel good.
December 26, 2007
Just a few personal notes to share with all of you. I am sitting in my living room realizing how lucky I am to have Christmas at home and ever so thankful for family, friends, neighbors and everyone else who stood by me. A special thanks to my sister for going with me to China and being by my side with such strength for me to hold on to. Everyone needs a sister like mine, normally I would share but she doesn’t have a minute to spare as she is maintaining a full time job. Thanks to my brother-in-law for letting her go to make all of this possible for me. God Bless all of you.
DECEMBER 27, 2007
I am noticing my left hand is still swollen from an infiltrated IV I had in China. I am hoping this will reced soon. Also, my PH levels are low. I continue to enjoy my new capabilities.
DECEMBER 28, 2007
Again I called Kirshner Ross-Vaden, our liason for advice as to reduce the swelling. She has suggested a moist wrap. I can’t say enough about Kirshner Ross-Vaden without her help the trip would not have materialized. She was indispensible to us. She always takes time for me and I do appreciate that. I am now in the standing frame for 30 minutes. I feel good and am happy.
December 29, 2007
My PH levels are now good. I am now in the standing frame for 20 minutes but my blood pressure has dropped and I am dizzy. So I will try later after I settle down. Nothing else to report at this time.
December 30, 2007
I have continued some of the exercises given to me in China each day. But today after doing the exercises with my caregiver I became lightheaded when eating breakfast. Not sure what this is all about.
January 2, 2008
Happy New Year to all. Something is changing. My bones are now cracking when I am doing exercises and this has never happened before. I was finally able to rise from a prone position in bed and touch my toes on my own. This is big for me. Praise the Lord in his mercy.
January 3, 2008
I slept in today. Upon going in my standing frame I noticed increased pain in feet, legs and back after standing for 25 minutes. It seems like my body is waking up.
July 8th, 2008
MARCH 22, 2008
A very hot shower proved to have taken the soreness in my body away. I was able to stay up til 11 pm. This is highly unusual for me.
MARCH 23, 2008
Happy Easter!!! I was in my manual wheelchair from 12 pm to 5:30 pm. Again, I was spasming from my feet up to my shoulders and neck. After taking the second Lyrica and Tylenol it quieted down enough for me to rest.
MARCH 25, 2008
Did not feel bad today. I have been extremely thristy. I am not sure why.
MARCH 26, 2008
I am having 3 stabbing pains in my head starting at the left side and moving to the right. Neither Advil or Tylenol seem to help. I put a heating pad against it and got some relief. Right side is close to my ear and I am taking cortisone drops for possible infection.
MARCH 29, 2008
Pain easing up a bit today.
MARCH 30, 2008
My right hand seems to be closing more than the left one. To keep it from closing I put a small red ball in the palm, tightly wrapping it with an ace bandage for overnight. The right hand is very swollen.
MARCH 31, 2008
About the same condition my right hand is still swollen.
APRIL 2, 2008
I have been plagued with constipation 5 to 7 days now. I am on Glycolax which seems to be working.
APRIL 6, 2008
I had my hair permed today. I don’t know if the solution caused my head to be sensitive causing vibrating pain through my head and neck.
APRIL 8, 2008
Caregivers discovered a lump on my lower back at present there is no pain associated with it.
APRIL 9, 2008
Both of my hands are numb.
APRIL 10, 2008
Bones under the buttocks are hurting and I have excruciating pain during bowel movements.
APRIL 11, 2008
Ear ache, stabbing pain all the way to my eye. Dr. Grumet prescribes 7 day Z-pak and augmentin.
APRIL 12, 2008
Starting 6 tabs of Z-pak, left arm went into spasms during which not only was excruciating pain from lower shoulder to entire hand. At this time the elbow to the hand is uncontrollable. I called the pharmacy to check on drug interaction. They were not sure. I called Dr. Grumet and he said to stop augmentin. The Z pak contains Mythlin and Predisone.
APRIL 13, 2008
Today I only had 5 spasms. The meds are giving me mood swings.
APRIL 14, 2008
Pain is getting less severe but still there. I can not stand how the meds make me feel but I am continuing anyway.
APRIL 15, 2008
Another day that I only have 5 spasms in the arm.
APRIL 16, 2008
One side effect of the drugs is constipation. I can work through this.
APRIL 20, 2008
Last steroid taken today. Ear problem is on the right side and hopefully today is the last day I will feel this day.
July 8th, 2008
FEBRUARY 9, 2008
I have now stopped all acupuncture with Dr. Ted Cibik. My physical theraphy is being done with my caregivers. Excruciating from the base of my neck to back of the head. Pain was so intense I was crying and screaming. My caregiver holds my head with one hand, while driving my chair with the other…momentarily it passed, leaving my head feeling sore as if it was a black and blue spot.
FEBRUARY 10, 2006
Pain and soreness have subsided. So far the body shows no residual improvement
FEBRUARY 12, 2008
Still being plagued with incontinence. Using Flostar for constipation, as I am having some problems in that area. I have refused any chemical asistance other than the Florstar.
FEBRUARY 13, 2008
No noticeable improvement. Grip on left hand is weak, difficult to grasp anything and difficult to blow my nose.
FEBRUARY 14, 2008
Up all night, frequent urination, feels the same as the conditions I came home under.
FEBRUARY 16, 2008
Called my PCP Dr. Grumet for the urination problem. He ordered Ciprofloxacin one tablet 3 times a day. This will help me temporaily.
FEBRUARY 17, 2008
Still doing exercises twice a day on my own with caregiver. My standing frame is one you must pull yourself up…….the weakness in my left side prohibits me from doing so. I am still waiting for residual improvements from stem cells.
FEBRUARY 18, 2008
Lost partial use of my left arm as I now have very little control over it. Lost partial use of both hands and can barely feed myself. Incontinence is stilly there and sometimes worse. The paralysis has now moved up to underarms and down my arms.
FEBRUARY 27 2008
No improvements from stem cells yet I am waiting.
FEBRUARY 28, 2008
My bowel problem has been eliminated today. I did not use any chemical assistance, either.
MARCH 1, 2008
Urination every hour all night long again. This has left me thirsty and lips peeling. No improvements from the stem cells yet.
MARCH 2, 2008
Called Dr. Grumet, PCP increased ditropan to 10 mg. daily. Ciprofloxian 500 mg twice daily.
MARCH 3, 2008
Medication prescribed is controlling my situtation.
MARCH 4, 2008
Actually sleeping from 3 pm to 8 am this is a marathon sleep for me. Well rested but still showing no improvements.
MARCH 7, 2008
Increase in ditropan seems to help with incontenience, however something is constipating me. I’m taking Guycolex by Dr. Grumet and continuing Florstar, also.
MARCH 9, 2008
As usual when my caregiver showers me constipation is no longer a problem. All systems seem to work now. However, still no motion in my legs.
MARCH 10, 2008
No improvement so far and I am waiting.
MARCH 15, 2008
Today I have experienced much pain in my body. The pains are so sharp I have incontinence I have increased Lyrica and have been taking double strength Tylenol.
MARCH 16, 2008
Pain seems to have subsided….not feeling to bad.
MARCH 17, 2008
I am back taking 3 Lyrica a day and there is constant pain in the buttocks.
MARCH 19, 2008
Pain level and site remains the same. Numbness in the hands is annoying and I am having difficulty feeding myself.
MARCH 20, 2008
Today I sat for four hours in a manual wheelchair at the tax office to file my return. I was in so much pain when I got home I was in tears. Again I took Lyrcia and extra strength Tylenol. This time the pain was different, it radiated right up my tailbone under my arms and I cried myself to sleep.
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.
July 8th, 2008
JANUARY 4, 2008
Appointment today with Dr. Ted Cibik to start acupuncture treatment as was done in China.
July 8th, 2008
