My story is about the same as others in chronic pain. It started in 1985 when I hurt my back at work. I saw a chiropractor and was told I pinched all the nerves from my neck to the tip of my spine. I was told to see a neurologist right away and was able to get in quickly. There I was told I had MS (Multiple Sclerosis.) I said, “Am I going to die?” “No”, the doctor said, “but it could put you in a wheelchair.”
I didn’t think about the pain I was in as I was no stranger to it. I broke my back twice when I was young horseback rider. At the time of my MS dx, I was in a relationship. We had just met and were starting to get to know each other. Then bam! But that’s how ms hits. I got out of my bed one morning and hit the floor. I was screaming my head off and realized I couldn’t hear my own cry for help. No voice, no feeling from my neck down.
My GP was called and he said to get to the hospital asap. I was taken to a floor that had all MS people on it. The doc was right there and we talked. Actually I wrote with my teeth which I learned how to do after I broke my back. Anyway, I was put on steroids to try to stop the progression of the MS. I had to stay in the hospital for four months the first time as they were hoping to stop it fast.
The steroids were IV’d in and that stuff hurt! It felt like someone was pouring kerosene through my veins. It burned and burned my skin. I was a total quad for four years and said I’m not doing this anymore. I got an OT, PT and a nurse who did tai chi. I was able to regain my arms, voice and feeling from the waist up.
I had my GP for six years when he stopped practicing. In 1992, my ms came back and I wasn’t happy about the new doctor’s very unprofessional attitude. He was a know-it-all! I was telling him about my treatment plan and was told to shut-up, that he could read. Well, I turned and started to leave when he said, “What’s wrong?” I just looked at him, then left and never went back.
I had a bad case of pneumonia in 1993 and was put in the hospital with a 106 temp. The doctor put me on antibiotics and something for the pain. The morphine made me sick. He then tried an array of meds and one of them helped. After I pulled through, he told me that I would not be going home. I had stomach trouble, bowel and swallowing issues from the MS and I had to go to the ER. It was a joke there as some of the ER doctors had no idea what MS was. I heard things like, “Oh lady, come on now. You can move your legs!” I was fit to be tied. I was told to go home and rest to feel better. I couldn’t believe what I heard.
In 2003, I had severe stomach adhesions which needed surgery. The doctor doing the surgery was cool as he knew about MS and pain. I was given demerol before and after surgery and I didn’t feel a thing. I had a radical hysterectomy, two shoulder decompressions from using my wheelchair and assorted colds, etc.
In 2004, I was having trouble swallowing again and made the ER doc give me a swallowing test. The test showed severe dyskinesa at the aortic notch (severe muscle spasms of the esophagus.) The doctors who had seen me since my first GP were terrible. I was laughed at, humiliated and was treated like I was less than human. I went through all the channels, including writing to the hospital administrators, JACHO, Congress members, etc.
In 2004, I went to the ER for pain meds again as the pain was making me crazy. I went for about four months and was told I needed a script for the meds. I saw a GP and was told to go back to the ER for the pain meds as they couldn’t refuse me. Wrong!! I was told by the ER docs that I could no longer get the meds there now that I had a GP. I was dumb-founded. I had been seeing these doctors for quite awhile and was now being treated like a junkie. After all, I had been through pneumonia, surgeries and then being told I was dying for seven years. To cap it off, I was now being told that I was an addict and a druggie. I was humiliated by doctors in the ER and in their offices. I had no clue what was going on with the drug war.
I had a home, gardens and a life. But now, because of the mistreatment of these doctors, I lost everything! My home, my relationship and my respect. I was threatened that the DEA would come and haul me off to jail. I will never trust a doctor again.
Today, I suffer still and have the added burden of Agoraphobia from all of the abuse. I’m still trying to figure out why the doctors and society see us women in pain as druggies?? I guess there’s a pain law moving through Congress, but it won’t pass just like all of the others. We need to ban together and educate the doctors, nurses, therapists and the public about this issue. Nothing will change if we stand/sit still. We need change now!