I'm Linda Kay and I was diagnosed almost two months ago with Arachnoiditis. I'd never heard of it much less knew what it was and had worked with the medical profession on and off for thirty years. The way it was explained to me was that it was from adhesions that I had gotten from a spinal leak that went unsealed for four months after a lumbar surgery. I was told there was no cure for it and that I would have to go on a pain management program for the rest of my life.

That explanation just didn't do it for me. I already had Lupus and I knew from that experience the importance of knowing about a disease so that you can prevent more problems. Knowledge is power when used wisely. I decided to check out the internet. That is were I discovered this support group and the information I needed to understand what I was dealing with and the strength and support I needed to make it through each day. When I first started reading about this disease, I cried for days and didn't know if life would ever be worth living again. I was already in agony with the pain I had in my lower back and hips and both legs and feet, but knowing that it would get worse instead of better than it already was, made me just want it over with completely. It was this support group that gave me hope to go on.

I have only been dealing with this disease a little time, but I find myself never without pain even with pain medication. I can't sit for very long at a time and when I do, I always get a surge of pain when I stand that nearly knocks me to the floor with its intensity. It is almost impossible to sleep at night because of the cramping in the legs and feet that make me want to scream at the top of my voice. Another thing that has been bad for me is the fact that I find it hard to walk because my feet hurt in a strange new way and because of that, I cannot do the one exercise that I was able to do to keep weight off. Putting on weight has been devastating for my self-esteem. I haven't found any way to exercise yet that does not cause me excruciating pain. Because of the Lupus, public water therapy is out. The chemicals cause me to have skin rashes and blisters. Therefore, it is impossible to stop weight gain...even with dieting. I went from being one of the 1991 University of Kentucky's homecoming princesses (a size 5) to the fat blob I am today. It is the first thing that people notice about me. It is devastating. I have to exercise to loose weight because I have been athletic all my life and my metabolism just shuts down.

Perhaps the worse thing at this time emotionally is that I cannot enjoy a good, normal sex life with the husband I have waited for all my life. It is embarrassing for me to talk about this issue, but I feel that it needs to be said. Most of the problems I had with my back were caused by being beaten on a regular basis by my abusive husband of 21 years. Then I get a divorce and stay alone for 5 years and when I do meet a wonderful man, I have this surgery and it all but destroys our sex life. I am blessed to have a man that believes in for better or worse, but I want that intimacy with him. Besides, one of the cruelties of this disease is that it takes away your ability to have a normal sex life, while it leaves your desires in tact.

As I said earlier, I am in the earlier stages of this disease. I have all the other horrors to face yet. When I received my Lupus diagnosis, I learned to stay out of the sun and to avoid stress and certain types of lights and chemicals and by doing so, I reduced my chances of having a flair-up of the disease. With Arachnoiditis, there is nothing that can stop the progression of this disease yet, but God.

Next week I go back to my neurosurgeon in Louisville, Ky. to have stitches removed from a failed attempt to remove a psuedomingocele that was caused from my spinal fluid leak. It was too large to remove and had attached itself to my spinal cord. Samples were taken to culture the fluid and I will find out whether I have another spinal fluid leak that is embedded into the adhesions and cannot be seen, therefore, causing another radical surgery to close it. I've had three holes closed already.

If not, I will be getting a morphine pump put in my back and have to have it filled every few months for the rest of my life. I'm only beginning this trip and I am already weary from not just the pain of the disease but the pain of the surgeries and tests. Try having a myelogram in your neck because they cannot put it in your back...especially when you have already had a cervical fusion and you lack the mobility to move like the doctors want you to. There is no way to describe that kind of pain. Then there is three hours in the MRI chamber laying on one side...awake...feeling claustrophobic...and with cramps in the hip and leg that make you want to scream at the top of your lungs, but you can't move or you might paralyze yourself since the surgeon in probing around inside your back around your spinal cord. Also there is the humiliation of having your clothing all but fall off of you exposing your breasts and bottom without being able to do anything about it. All the while, there are a dozen people walking around you acting like it was no big deal. It is a big deal and it hurts mentally, physically and in every other way possible. I will never get over that humiliation.

My story is on-going at this point because I am in the earlier stages, so I haven't exhausted all of the things the doctors want to try. Others are through with it all and are just trying to live without pain every moment they live. Our desire is to save people from ever getting this disease. In most cases, especially in mine, it is avoidable. Spinal fluid leaks must be fixed as soon as possible to avoid this disease. Others in the group have Arachnoiditis because of other things, but they are all manmade for the most part. Avoidable. NO ONE EVER HAS TO GET THIS DISEASE!!!

This is my story for now.
Linda Kay