Around and Around We Go

Well, there is no shortage of changes, no shortage of frustrations and sometimes no shortage of hope. The most recent news is difficult to get through. The physicians are getting risky with their suggested treatments and I’m really having to decide just how much I am willing to gamble. I feel, after the hyperthermia trial in Holland, that I am done with the experiments.

Now I am at steroid injections and am stopping that unless they are done radiographically. I was a neurologist’s office last week and she gave me 6 injections trying to hit the piriformis muscle. I feel terrible now and over the last week it’s been hell. I was supposed to go today for a shot into my neck and begged off. She’s made an appointment to do a repeat one radiographically but this being Canada I have to wait a couple of months…She wants to do botox injections into the muscles. I am totally uncomfortable with that and want a second opinion.

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God Grant Me the Serenity to Accept the Things I Cannot Change

Life is a constantly changing canvas. We either adapt to the chances or we stay where we are. I’ve seen people that are bitter and angry. They can’t get past it and they put themselves into that scenario every single day. Not realizing that some changes have to come from within…

I had a support group back when the hospitals were notifying people that they had hepatitis C from the blood transfusion they had during surgery…I understand the anger- it was a part of me, too. But if you don’t let it go, you live and steep in that anger. It eats you up. No joy. So many other things to be thankful for. Children. Grandchildren. Life. Even in that moment of giving support, I met people that became lifelong friends. Special people I never would have met. I’m not saying that the anger has no place – it’s just not the place you want to stay.

For ten years, I suffered from hepatitis C. I choose the word suffered carefully. Everyday was a trial. Getting out bed was hard in the morning and sometimes wondered why I was getting up. I kept fighting. I was in clinical trials and spent three years taking drugs that may well have caused some of the problems I’m dealing with today. Nothing worked. Then I went to Holland and was accepted into a clincal study. It was a 7 hour surgery where a machine was used to heat your blood to exactly 41.8C. It caused the proteins in the immune system to unfold (from the heat) and then on the cooling refold back into their natural shape. The hypothesis was that the immune system was defunct. It no longer recognized the hepatitis C as an infection. After the surgery, it sure recognized it. And then I underwent high doses of chemotherapeutic drugs for 52 weeks. I needed blood transfusions (ironic, huh) and had to take shots to build my neutrophils- part of your white blood cells. I still have to take those shots. It was the worst year of my life. But I persisted where my family had doubts. I knew this might be my last chance to rid myself of this terrible disease.

Well it worked. That was in 2004. The hepatitis C is till undetectable. The odds on it returning now are very small. Every day is a good day compared to when I had the hepatitis C. But no one knows what caused my spinal degeneration. Advanced disc disease. Spinal Stenosis. Foraminal stenosis. Secondary scoliosis. Was the drugs? Was it the hyperthermia? Those are questions that can’t be answered…But I had MRIs from 2001 that showed normal degenerative changes for age. Now they read like a book. I have the spine of an 80 year old and the mind of 23 year old. :-) I wouldn’t change anything. That’s how bad the hepatitis C was.

Now I sit before you having had three back surgeries. Being told that I move like a young person and my mind and body are not in sync. I’m used to fighting. Where does acceptance come into play? Do I accept this for my reality or do I continue to think that all will be normal one day? Am I keeping myself in this place the same way that the people did with hepatitis C? I don’t know the answer.

Maybe it’s a half way in between. I was born to fight. I was a blue baby back in 1954. Do learn to stop and accept the changes? I don’ t know….I just don’t know. God grant me the serenity to accept the things that I cannot change, the courage to change the things that I can and the wisdom to know the difference.

Lucky is Relative

A video update following my visit Spine Clinic physiotherapist