Below are the health topics and actions from October 1997 through the date of this writing which is March 22nd 2000. (This is copied, there are udates after that time) They are in chronological order. Although wordy they are short accounts of how I physically arrived at the state that I am in today.
Diabetes
In October of 1997 I finally went to the doctor. For 5 weeks I had been having some very strange things happen to me. I was thirsty all the time. I mean really thirsty. I traveled for the company every week and each day I would go to the store to buy Gatorade. I was drinking two gallons a night between 11:00 PM and 7:00 AM. Every hour I would wake up and have to urinate. While up I drank at least a quart of Gatorade. I blamed it on old age and told myself that it would pass. With the urination during the day, well, lets just say the minute I felt the urge I had little time to get to the bathroom. There were meetings I just bolted out of to get to the bathroom. After the third week I was exhausted but still shunned the doctor. I just kept thinking every thing was old age and would pass. Next was eating. I was hungry all the time and ate everything in site but was losing weight like crazy. What a great diet. That Thanksgiving I had a friend from Austin come in and surprise me. But I surprised her. I backed right into a car behind us when picking her up at the airport. By this time I was having periods of blindness. I couldn't try to read anything because it would just all go blurry. I had to do something. The week after Thanksgiving I went to see my Dr. ( Dr. Persson by the way is a great doctor. Second only to his wife Dr. Persson-Scaltsas, who has the best nurse, Elizabeth. All of them have been more than helpful. Elizabeth has gone far past her "line of Duty" in calling and checking on me as well as putting up with my moods. None of them take any crap off of me, and Dr. Scaltsas's wisdom has corrected my thinking on a number of issues.) Well I was told that I had diabetes. I couldn't believe it, I mean no one else in the family had it. So I was placed on Glucontrol and life went on. I saw another doctor to make sure that my eyes were ok and they were.
Diabetes
In October of 1997 I finally went to the doctor. For 5 weeks I had been having some very strange things happen to me. I was thirsty all the time. I mean really thirsty. I traveled for the company every week and each day I would go to the store to buy Gatorade. I was drinking two gallons a night between 11:00 PM and 7:00 AM. Every hour I would wake up and have to urinate. While up I drank at least a quart of Gatorade. I blamed it on old age and told myself that it would pass. With the urination during the day, well, lets just say the minute I felt the urge I had little time to get to the bathroom. There were meetings I just bolted out of to get to the bathroom. After the third week I was exhausted but still shunned the doctor. I just kept thinking every thing was old age and would pass. Next was eating. I was hungry all the time and ate everything in site but was losing weight like crazy. What a great diet. That Thanksgiving I had a friend from Austin come in and surprise me. But I surprised her. I backed right into a car behind us when picking her up at the airport. By this time I was having periods of blindness. I couldn't try to read anything because it would just all go blurry. I had to do something. The week after Thanksgiving I went to see my Dr. ( Dr. Persson by the way is a great doctor. Second only to his wife Dr. Persson-Scaltsas, who has the best nurse, Elizabeth. All of them have been more than helpful. Elizabeth has gone far past her "line of Duty" in calling and checking on me as well as putting up with my moods. None of them take any crap off of me, and Dr. Scaltsas's wisdom has corrected my thinking on a number of issues.) Well I was told that I had diabetes. I couldn't believe it, I mean no one else in the family had it. So I was placed on Glucontrol and life went on. I saw another doctor to make sure that my eyes were ok and they were.
In early 1998 I began experiencing numbness of my finger tips and my toes. It is/was not an unusual problem for diabetics. Still traveling I tried to watch my diet but relied on the medicine to control my blood sugar. The medicine did a great job. I didn't do half as well.
The numbness increased. My feet and my left leg began to feel a tingling and at other times a burning. I kept traveling and trying to lead some kind of normalized life. My work, as with so many men, was my measure of worth as well as the one thing in my life that I could control. Little by little I did less and less. The numbness began to turn to constant burning. I remember trying to cross a street in St. Louis and praying I would not fall. My legs that summer were not reliable. Sitting only made matters worse. It would feel as if my pelvis went to sleep when sitting.
Then it started affecting my right hand. That was very quick and very scary. My right hand began to ball into a claw and I had less and less use of it. The week of August 16th I began writing my final text. On my lap top the document was entitled "Open in the event of my death". I did not know what was going on and I feared it would be MS or something totally debilitating. My right foot was also going through periods when it pointed straight down and would trip me when walking.
Monday August 24th Dr. Persson ordered some more tests. My main complaint other than what is described above was that every joint in my body ached. I was given some arthritis medicine and an appointment was made to see Dr. Scaltsas the next day. Dr. Scaltsas examined me. On Wednesday tests were run to see if my muscle tissue was breaking down. It wasn't. All tests to this point came back normal.
Let me back track here a second. In June I had what was thought to be a pinched nerve from my neck to my right shoulder. Other than that I have never complained about any back or neck problems.
Friday morning about 2:00 am I was going to my bedroom and collapsed onto the carpet. About the only thing I could move were my fingers. It took me three hours to pull myself by the carpets fibers to the bed. The whole time I was struggling to get to the bed, my three great Danes thought, that it was playtime and were scratching at my back. It looked like I had had wild sex but I assured everyone that the scratches were not do to that. (Those of you that know me know that I would have bragged if it were.) About 5:00 am I put a call into Dr. Scaltsas answering service. She called almost immediately. After telling her I was in major trouble she said to met her at her office at 9:00 am.
Herniated Disc
Dr. Scaltsas after seeing the rug burns on my legs and knees, as well as seeing me struggle to move with a cane had me admitted to the hospital and had me scheduled for an MRI. I had a new development, one I discovered on the carpet. If I moved my neck I could send a shock down my body that I could feel all the way into my toes. I was scared. I wondered if I would ever be able to earn a living again, I knew that I could not physically go on as I was.
I was told that if there were anything found during the MRI that I would have a "Contrast" injected in me and that more scans would be done. It was a closed MRI which is essentially like being inside a piece of PVC. It was small and towards the end of the regular MRI (45 minutes) they injected a contrast. By this time I was having major claustrophobic problems. Small spaces had never bothered me before. This was bad. When I was finally pulled out I knew that they had found something, and I asked the person running the test what they had found. This person was not a doctor and could not discuss anything. I pleaded, explaining I was worried about never walking again. That kind person put a film up on the light box and basically just told me to look at it. In the black and white image I could see the vertebrae and below one of them the white tube that was my spinal column was shut. It opened up again a little further down the neck.
I'll never forget what Dr. Scaltsas said after talking over the results and my needing surgery as quickly as possible. "Where am I supposed to find a Neuro Surgeon on a Friday at 4:00 PM?" Well she did. That Saturday at 1:00 PM Dr. Beach operated and removed the disc and fused a piece of my hip in it's place. Going through the front of my neck he did a great job, you can't even see a scar.
He told me that had I fallen backwards instead of forward that the spinal cord would have probably been cut. He looked at me and said "Christopher Reeves". If my spinal cord had been cut I would not even be able to breathe on my own. I had a lot to be thankful for.
Pain
For the next three months I would say that my body was numb. And when it started unnumbing there was pain. Also during this time I began falling and about every two weeks I would have a good fall. The one picture in the collage is me after a fall. Broken cheek bone, busted lip and the back of my head was busted up. When Adrian came to my aid I was covered with blood. A common thing of these falls was my inability to move for anywhere from two to five hours afterwards. One night I lay in my drive way for three hours. Another I had pillows thrown on the floor from the sofa and slept where I laid.
I went back to work within two weeks. The falls were an embarrassment but got to be a common thing. My left leg was in a lot of pain as well. It burned, and I mean a very painful burn all the time. My left foot and right foot burned as well. My lower back really hurt. I mean enough to get me back to the doctor and an emergency room visit. I went once asking if I could have a massive kidney infection. Another time I asked if somehow I could have a broken back. I have never been a person to ask for pain medicine, but I was. Nor was I the type of person to run to the doctor for every little thing. The pain was becoming unbearable.
The next few things I did were wrong. I can see it now. In January 1999 the traveling was over. It was very hard for me to do anything but work. I would get up at 6:00 AM and if lucky make it in by 9:00. I would leave at 4:30. It was very unnerving for driving. I could not look over my shoulder like I needed to when driving. When I got off I drank. It was a pain killer. I was in a very bad circle. The right thing that I should have done was keep going to the doctor and saying, "I hurt".
I was miserable. In the smoking room in March a friend named Barbara looked at me and out of the blue asked if I had been thinking about suicide. It really came from left field. I answered her honestly, that I had had passing thoughts of suicide.
Suicide
I had a beautiful great Dane named Delilah. She died just shy of being three. It was a rainy April night and she had a Grand Mal Epileptic seizure. It was the first time she cried during any of her seizures. In the middle of the seizure she just stopped breathing. I cried like a baby. I buried her the next morning and placed a rose in the grave with her. She had had a hard life. I still miss her as I write this. Anyway at the end she was taking 16 grams of Phenobarbital in the morning and 15 more at night. Each was accompanied 200 mgs of a usual epileptic drug who's name escapes me. Anyway her prescription was for 500 tablets a month.
April 11th was the day. I did not think of suicide that day any more than usual. It was not like I sat there all day and did a lot of thinking and said "Ok this is the time I scheduled it for." I was at the end of my rope. I wrote a letter to my three doctors and told them that I could not go on. That I needed to go on disability and I needed their help. The immediate feeling after I faxed that letter out was shame. I felt weak and unmanly. It shamed me to make that request. And I remember saying to hell with it all. and I tried to abandon my dogs. I thought I had about 150 pills left. Mitzi thought it was closer to 300. Anyway I remember taking 5 at a time between gulps of gin. I did not leave a note. It should have been enough to kill me and a few others. It was not traumatic or emotional. It was just the thing to do.
Spinal Stenosis
I was found two days later. I saw the light. I came to about three days after that. Then there were the blood clots in my lungs, and the pneumonia. A lot of time in intensive care. The worst being the needles in the crotch for large iv's. A psychiatrist I spoke with could see I was in pain. He finally arranged an MRI of my lower back. After the MRI, I was put on 45mgs a day of methadone. I nodded, I hallucinated, I got third degree burns on one leg from a cigarette I dropped on my lap after nodding out and never felt it burn through the shorts and onto my skin. Then my whole spine was MRI'ed. The neck area was worse than the lower back.
I had never gotten off of the cane after the first surgery. I could hobble around some. But I could not handle ramps, or stairs, and the cane was always with me. The hope was that the next surgery would give me my legs back. It is a common thing with Stenosis as it is with anything that messes with the spinal cord, that results cannot be guaranteed. I really wanted the lower back done. But my surgeon felt that fixing the neck might result in enough relief that there would be no need for further surgery. I rolled the dice. I lost. There was never a surgery on the lower back. The spinal cord although still compromised is for the most part clear. The pain remained.
Here is a link for a nickle tour of www.mayohealth.org/mayo/9509/htm/ww5r211.htmspinal stenosis. http://www.mayohealth.org/home?id=HQ01413 The information is from the Mayo clinic. (Many more sites are available if you wish further information. Just scan for "spinal Stenosis" using yahoo or some other search engine)
Mothers Day 1999I Can Do Anything If I Don't Fall
I am on a walker. I would love to get on a cane. I try it every now and then but I cannot trust my legs. The burning is part nerve damage and part Diabetic Neuropathy. It is so very frustrating to not be able to do a lot of what I once could. But I have my dogs. People have been stunned when seeing me. They remember the guy that helped them pour concrete and loved to fish. Even though I am a large person there is an air of frailty around me.
I swore that I would never take methadone again. But my life in the fall of last year was getting up, fixing coffee, feeding the dogs, cleaning myself up and vacuum and dust one room a day. There was so much pain that I ended up with about one hour of mobility a day. The amount of pain medicine that was to last me the whole day I took all at once to get that one functional hour. The rest of the time I sat very still or I laid down. Well now I am back on the methadone. I still hurt all the time. But it is more like having a chronic pulled muscle in my neck and lower back. Weather changes and strange positions can cause pain that the methadone doesn't touch. Needless to say I can't do a damn thing about the weather and I stay out of that one position I found. I still can't sit for longer than an hour with out either walking or laying down for a while. My legs still burn, but I have medicine that helps with that as well. I have managed to do some light maintenance around here. I even painted some base boards. I was laying on my side on the floor to do it. You get a different perspective from down there.
I go out once every two weeks or so to Wal Mart and to run errands. I go to doctor's appointments. I do maintain my own house although it is hard. Adrian and Mitzi do so much around here. I doubt that I could make it without them. I have the dogs. I don't drive. If I were to have any accident while on methadone no one would be in my corner. So I am totally dependent on others. How I would love the ability to run to a burger king when I get the chance. I have kept my truck. If there were a true emergency I would risk the driving. Also with the bankruptcy I will not be able to have a new vehicle for many many years.
I would be a liar if I did not confess that there is a loneliness within. But I see myself more of a burden than an asset to anyones life.
Do I still think of suicide? That act has brought me into the midst of bankruptcy. There were little gains because of it. My relationship with my sister was revived. And I have some new close friends out of St. Louis due to it. Yes I still think of it. But it is an act in my past that hurt a lot of people. Most of all myself.
June 2000
I was getting less and less pain relief. I hid the fact that I was very near falling regularly again. In talking to the doctor he was surprised that I did not ask for an increase sooner. I had become tolerant. Well we built me up to 60 mgs a day which was three times what I was taking. I have very little pain and there are times now where the nodding out is a problem. I go back this week and will stick at 40 mg (double what I was taking) for a while. Pain is still there and I have more functionality. The other thought that I have is that I am going to need to go higher the next time I have tolerance built. I am going to need somewhere to go. He had talked about morphine but I asked him to leave me on the methadone for the time being.
My feet are about two to three times their normal size and they hurt. That is one of the side effects. I am so ashamed that I cannot wear normal shoes. I wear those canvas deck shoes that Wal Mart sells. I should be more thankful.
November 2001
So much has happened.. Come January of this year (2001) I was so much stronger. I was taking steps off of the walker.. Then I had a terrible fall. A stumbling thing where I fell forward and gained momentum. As I hit the ground I was at an odd angle and my head and neck never hit the concrete. Immediately I was in tremendous pain and the whole range of motion in my neck and head changed. After being x-rayed I was diagnosed as having whiplash. I could not hold my head up anymore. So I began a trip down the cervical collar road. Pain was tremendous,,
I tried all collars I could. Soft, Philadelphia, and finally a Mami J.. None were making me as well as I was in January. I still could nto hold my head up. I weakended and watched my muscles soften.
My doctor kept saying, well you pretty much are what you are
May 29, not much had been going on to help me.. Then another fall. This one head first into filing cabinets.
This fall jammed my neck into my spine. Immediately all feeling in my hands and arms was replaced with a very new pain. Imagine the numbness that you get with the injection from your dentist. Then imagine it being so numb that it hurt. Very painfully hurt. From my neck to my finger tips.
Still the doctor had no course of action to try. I was told that this was as good as it was going to get. But it was not over.
I began to get so weak. I could barely lift up the bowl of dog food off of the floor after feeding the dogs. I could not lift a laundry basket. My head lay on my chest.
I wore collars out in a day or two.
Then the cruelest part. I began to have no strength to walk. I would lay in bed and defecate on myself because I was too afraid to try to walk to the bathroom at times. If I had not had the dogs.....
Finally a MRI was done and the term denoting hunchback was used for the first time. What a life. 48, on a walker, can't hold my head up, constant pain, and now a hunchback. I was on a combination of Morphine and Methadone and not high, but with no relief. This was the lowest moment of my life. I waited for the new collar to come in. If it did not help I knew I was headed for a nursing home.
I was spending hundreds on these collars and decided that I had to get one that could support my head without wearing out. If I had the support my head was somewhat comfortable. I had kept telling my doctor that if I pushed my head back that I was much more comfortable, stronger and could function closely to normal. I actually wore a board with a belt holding my head in place when at home..
Surely they could pin my neck in place.. I could have so much better a life...
I called my doctor. I was so excited!! She was non plussed. I was trying to tell her that I had found a way, that I had an idea of how to maybe get my life back. I felt like I was patted on my head and sent on my way. I asked her about Dr. Maverick (my name) who I had heard was the best spinal/orthopedist around. She said she'd refer me. She did . But no to him., to another spinal specialist. When I saw him he told me that I was out of his league. That my case was too complicated. There was only one doctor who might help me. And his name was Dr. Maverick!!!!. Then he told me that my doctor, well I was out or her league, also. That I was too complicated for her as I was for him. I thank Dr. Gourmand.(my name) He helped me in many ways.
It was 10 weeks before I could see Dr. Maverick. During that time I had a physical therapist coming by and really trying to help. This was the first physical therapy that I had had since 1998. None after the second surgery. On the 11th of July I got my SOMI collar. And the constant pressure that it could provide immediately made things like walking easier. Unfortunately since January my muscles had been not being used my strength was gone. I started with 1 lb dumbbells. Then I got this foolish idea to get a treadmill. In early August, that first day I did .002 (2 hundredths) of a mile in 20 minutes. That is how bad it was.
I then got off of the morphine. It wasn't doing anything.
Today, 14 weeks later, I do a mile in 30 minutes on the treadmill. I am constantly working on moving my feet correctly. Walking straight instead of bent over. I spend an hour each morning with wrist, leg, and hand weights. My dumbbells are 8 lbs now and I have the 10 pounder here. I walk with wrist(2.5 lbs) and leg (5lbs) weights for 15 minutes. Then I take the left legs weight and put it my right side and walk another 15 minutes.
In the kitchen and bedroom, my walker sits against the wall. I walk funny. Toddling like a baby. (LOL) I get real frustrated. I want things to happen faster. I wear my collar much less. I want to be able to drive again. If I can do that I can get to a gym. If I can get to a gym and get some balance back I might be able to one day totally do away with the walker..
I can do anything. If I don't fall.
Today(sometime in 2001)
I started Physical Therapy again in January. And I got to use a real treadmill. It felt so good. I could get up to 2.5 miles per hour! Sill though the walker. I keep feeling if I can get the strength up I can overcome the balance problems. It is all a matter of balance...
There is still a lot of pain down the arms and hands.. Typing is impeded and hurts. There is the original pain that I had after surgery..
If I can straighten out my lower back and if I can straighten out my neck a bit after my lower back.. I could get my balance back.. the odd thing is that it doesn't hurt me any more to be in a posture as it is meant to be. In some ways it hurts a lot more. By pressing into a wall I can force my back to be more in line with how it should and then I increase the pressure on my neck and my hands and arms.. That nasty sleepy pain from my neck to my hands just about totally goes away..
I told Dr.Mmaverick the day I walked in.. If he could just PIN MY NECK INTO PLACE I could do the rest. Just make it so my head is in the natural position it should be in.... He didn't listen.. Got side tracked..
April 2001
Dr.Mmaverick.. I called him that because he was the one they said would do surgeries no one else would. He was the one that would go where no man dared.. He sneers when I mention one of my consulting surgeons.. That surgeon is the dean of the medical schools department of neurology.. What doctor do I believe? Where can I find one that will listen....
In February one of the BEST things that had happened to me since 1998 occurred. I had gotten certified to drive again!! Man alive.. Almost 3 whole years isolated in this house..
And then the next day another BIGGER surprise!!!
The Recumbent Bike that I bought myself for Christmas broke a weld that held the seat. I went flying and landed, where else... Back of my neck..
I HAD A NEW PAIN. Couldn't aggravate what was already there.. But had to get a new one.. My gait has changed. My foot actually corrected it's position but now I have to try to get the muscles working back that way again..
My walking is now a struggling 45 minutes for a mile. . I am back in Physical Therapy and can see just how much I have lost.. My posture is a real mess.. So much weakness on my right side.
The MRI showed that C5 was herniated. The Myelogram has my doctor suggestion a duel fusion. One at C3-4 and the other at c5-6.. I had to go look to check, but c3-4 is where I was done before! After digging around through records I found in my discharge records in May 1999 where the comment was made that the fusion done in August of 1998 had collapsed.. Think they might have told me.
About the worst problem I have is that I have trouble holding my head in it's correct position. The MRI last June mentioned Kyphosis and commented that there was no apparent reason for it. Well the fall in January 2001 is the reason. It began immediately after that. My head wants to lay on my chest but that increases pain down the shoulders into my hand.
If they would only pin my head and neck in place.. I could get down to only two pains in my neck instead of 4!
I have had shots in my neck.. All over my neck.. two at a time even.. Sometimes I think they help some.. But I think it is more that I want to believe that they are..
Recently I laid out all of my MRI's an Myelograms for the last 3 years. I have a lot of problems t C7-T1. The whole holding my head up thing is a real bitch. They had found things, 5mm, in size described in one of the MRI's that they said were probably cysts. Then they disappeared.. I wonder if they could be so big that they have taken the whole area over.. Other things have come and gone in my tests.. Depends on what day and what hospital I guess..
Foot drags at time. I gotta be real careful with that. At others it doesn't. Sometimes if I concentrate I can overcome it with strength.. It is just always hard to concentrate on every step I take. But If I don't - I fall.....walker and all.
I love my dogs.. But I have days when I wish I could just stay in bed all day . Just one day.. And then there are the days that I know that I may never want to get out of bed. It is better that they are here..
I would like to sleep a night, well at least more than an hour. I would like to turn and toss in my bed. I would like to feel a hand in mine..
I feel guilty for asking for all of this.. Maybe if I could just walk without the walker.. I'll keep the pain.. And I know that if I put pressure on my neck I can take a few steps....
I just gotta get someone to listen! Maybe this time....
Dr. Hochman at The National Foundation for the Treatment of Pain has been writing.. http://www.paincare.org/ is their web site. They would like me to see a surgeon at Baylor. I will do that this summer..
As long as I have hope.... OUCH!
I'll keep trying..
July 13, 2002
Today I have walked on Gorton Road without any assistance. No walker.. No CANE!!! THANK GOD! My gait is unsteady and I teeter at times but I can get stronger. I can be afraid of falls that may never come or I can try to regain some life. Lower and mid back problems are still painful, and still mandate periods of laying down during the day. But I can at least feel the sand between my toes one day..
Now I want to start looking for my mate. I am not desperate. But I am nto meant to walk alone in this life, My heart is loving and has so much to give and my spirit calls a name it does not yet know.. A hand to hold and g aze to look into.. Then the process will be complete. I sure wish she were here to share this moment with me. She would be so proud.
September 19, 2002
A lot has happened. New Surgeon. New pain doctor. New Brace for my Sacroiliac. I am on a combination of pain meds. I also get shots every 6 weeks at s1. My therapists tell me to be careful, but I have a life to life.... And I accept that it will be with pain every minute of every day.
Well back in May I decided that I was tired of walking the 30 ft living room and I had been thinking a lit about what if I fell on Gorton. So I got a phone and decided one morning that this was the morning. And I walked about 5 houses down and back and laid down for an hour. The next morning was 6 houses..
In June I decided to try with the walker at my side. And I actually walked better. I could take a decent step. Then finally I felt I could do it with a cane. So I took my walker and in July set it aside on a flat stretch and walked a bit with just the cane. Balance was returning. The hardest part was learning to use my right foot like a prosthesis. And make it land where I wanted to throw it.
I've had a car knock the walker from my hands and I have walked and slid. But I just keep telling myself damn,,damn,,,damn leg.... damn foot....damn pain....
I still go with my walker by my side. And I still walk without a cane, but it is safe for me on the road. I haven't mastered turns or quick stops. Like if I walked up to you to talk to you I might even fall in your arms.. I don't know that I can get any better than this physically or pain wise.. Now it is time to maybe give back to others....
I do the best I can. I have no one to impress but myself. And I could do more.... and I will in time. I had to think quite a bit about opening the door and stepping out. Since I cannot turn my head much I am looking at mirrors for towing vehicles.... And I am thinking about driving. That in a city with little transportation is a mega award.. Life slowly returns. I tell myself to be patient, (AND I AM NOT A PATIENT PERSON) and I realize I need to lay down every couple of hours, but if inbetween I can regain my independence.... That is all I pray for.
2004
I carry a cane when I go out. I guess more of security than need. My life is varied. I spend a couple hours a day working around here.. Wish I could get more motivated in cleaning! LOL.. I love to work outside.. Then a few hours a day with the birds. Then the internet.. So life is good..
I so hate what I have become physically.. People tell me they cannot believe how good I look and how well I am doing. Still it is not what I was used to. I walk at a slower pace than most people and at times I drag my foot a bit. It is embarassing.. But it is me.. And I Will never quit trying to recover what I once had.
Pain is well controlled with medication so that is not so much an issue..
I feel so ugly...
But when all is said and done.. I can do almost anything I did before.. Just a bit slower.. Things like running and jumping are no longer a part of my life.. But everything else is..