3. My Life Evolves
After the hysterectomy, a whole bunch of new problems started, like severe migraines. I lived with this migraine for 3 years until I went to Oak Brook. A Professor where I worked at the time, forced me to go to this Doctor because he had helped his wife. I went when the Professor made the appointment for me. When I went it was the strangest appointment I have ever had. First, he had me stop in the doorway and smile. That seemed weird to me. Then, he told me to sit down in the chair. He turned to Bob and asked him a lot of questions and would not allow me to talk. I was surprised by Bob's answers. When the Doctor turned to me, he could see I was surprised. He said that was why he asked the husband questions first, to get the real story. Then he said, you are low in this and this before he even took blood tests or examined me. I asked him how he knew and he answered by the color of the whites of your eyes, the skin around the eyes, the color of my gums, my skin etc. When it was all over, he put me on a low dose of estrogen, progesterone and thyroid. Within 3 days my migraine was gone. Not only that, but my hair that had gone completely strange and was straight in some places and fine in others while coarse in others, was now tight and curly. I couldn't even get a pick through the curls. It was the craziest thing! So this was my second autoimmune disease. I went to a hormone specialist and he said that 80% of people who develop Thyroid disease will develop Diabetes. I went home and cried. Two years later I developed Diabetes II. My 3rd autoimmune disease. Things were not going my way.
You know that at this point, I was young, in my 40's, and yet I was beginning to feel really old. I was beginning to feel tired and I felt like it was hard getting my diet right with the Diabetes II. Then I started a business of my own. ReTouch of Class. I loved having my own business. The freedom of having my own business. However, it only lasted 2 years for many reasons and so I started running it out of my house. That was much better actually, lower overhead, I could do house chores during breaks, I could do photographic retouching and when I needed a break I could do my MLM. One day as I was doing the MLM part of the business, I was headed home after making a great sale and I turned onto a County Road and ended up in a head-on collision. All the Emergency people said I should have died, but the Good Lord was watching out for me. I guess He had other plans. I acquired RSD/CRPS which is Reflex Sympathetic Dystrophy/Chronic Regional Pain Syndrome instantly. I was fortunate. I was diagnosed within 2 weeks. Most people don't get diagnosed for years and by then it is firmly entrenched. The first Doctor I went to who was supposed to be an expert in RSD/CRPS, was so wishy/washy that she gave me 9 diagnosis but none were RSD/CRPS. However, all of the names she gave me were names that were names used for RSD. She gave me a shot in the shoulder that turned my whole arm black and said 'OMG what just happened?' We looked at her and I said 'You are the doctor, you are supposed to know.' 45 minutes later, my arm turned bleached white. She sent me home and told me never to get acupuncture because my nerves were in the wrong place. She was an acupuncturist as well. The neurologist who gave me blocks told me that test was positive for RSD. When I called for another appointment with her, her secretary told me she didn't want to see me again.
At 45, I was officially retired, but not the way I wanted to be. The occupational therapist came out to the house and announced I was completely disabled. I couldn't even open a jello container. I couldn't hold a knife to spread peanut butter. I had to write with my left hand because I couldn't hold a pen or anything for that matter with my right hand and couldn't hold anything in my right arm. Her exams usually took one day, but with me it took 2 because I could stand a full day, so she had to come back a second day.
After this doctor, dismissed me after 3 months, I curled up into a miserable little ball. I lost all of my friends. My church didn't help me. As a matter of fact, they didn't believe me at all and almost stole our daughter from us. It was a close thing and we saved her by one day! She was a teenager. It is a horrible story, that I won't go into too deeply, but we never went back to that church as long as that team was there. I know that God asks us to forgive, this is one I have a very hard time with and pray daily for help. Most people at that church have no idea and to this day, most of them don't even know I am sick. We finally moved and I get more support from this church then I ever did from that one. Enough. I finally got angry at myself and got on the computer and found a support group and asked if there was a Doctor who could help me in IL. Finally, I found a Doctor and Psychologist in Chicago at Rush. They were awesome and the first day they promised they would never abandon me. I cried. They gave me medication so that my legs and arms wouldn't just go flying up in the air for no reason. They put me in the hospital for an epidural and physical therapy so that they could get my frozen shoulder to move. They had to make up exercises for me. It was an awful time. The psychologist put me on the first suicide watch. I told her I wouldn't commit suicide. It wasn't my right. God put me on this earth and He was the only one who could take me off, but she didn't believe me. Bob called the church. They didn't do anything, again. You would think that they would but, ....
During my active RSD/CRPS years, several of us went to Washington, DC and walked the halls and tunnels of Congress, talking to many in the House & Senate bring awareness of RSD/CRPS to the Hill. The pain was almost beyond bearing, but I felt I was doing it for the good of all. After the first time, when there were only 4 of us, my friend Tom and I created trips once or twice a year. We would assign jobs for people to do and by the end we would have 16-20 people head to DC with us. There would be 1 RSD-er and 1 well person. If an RSD-er could not bring a well person, they could not go. We always had one suite for training and eating together and regrouping. Then we had a group of rooms together and then we would be in DC a week. We would split up and visit as many legislators as possible during the week and at night we would eat and compare notes. We were always well received. I remember several times I would be asked to stay behind so that I could be asked more questions and then more Senators would join in the discussion. My Bob went once and my daughter went once. She could get around those tunnels like no one else. She was never lost. I never knew where I was! LOL. Then, I was asked to speak to a medical panel of Congressmen. In this group that was speaking were 4 Doctors and Ed McMann from the Jerry Lewis MD Foundation, also the Johnny Carson show. I had 5 minutes to speak. Boy was it hard getting everything that I wanted to say in 5 minutes! Anyway, there wasn't a dry eye on the Congressional Panel. All the Doctors speaking were all nodding their heads yes at everything I said. Ed McMann was crying and he was there to speak about Jerry's kids. Afterwards, he stopped me and asked if he could hug me. When I said sure, he asked how, so I hugged him instead and showed him how to hug me. Then a week later, I testified before the Maryland Congress.
Once Cecil understood what was going on with me and understood why I wasn't working, she finished high school early. She started college early as well but when she realized we were in trouble financially. She quit college and started working full-time. She would hand her check to her Dad to help pay for our bills so we wouldn't have to claim bankruptcy. We got food from the food pantry and Bob's Mom helped so much! God Bless her! She never doubted me! That summer, I got a call from my Mom's cousin in Western Canada. She was coming to Winnipeg and wanted me to meet her there. I was just telling her that I didn't have the money to come when Cecil walked in the door. 'Tell her we are coming.' She had a huge smile on her face. So I told her we would come and that Cecil was going to pay for it. When I got off the phone, I asked if she had met her fairy Godmother. She told me 'Sorta' she had landed a really great babysitting job. So she did babysitting during the day and got paid really well and then worked full time too. Then she paid for a wonderful 2 week vacation to Winnipeg and a great time. We spent the 10 days in Winnipeg talking and talking. You would have never known we had never met before. We also compared notes and did genealogy. They wanted to know about Grandpa, that is a whole other long story, and Mom and us and then we compared history. We compared old stories and compared storied from their parents and stories from Grandpa. It was fun. We talked about Whitewater, WI which our family founded and the history and family and I told them what I had found and the pictures. It was so much fun. Then we came home to reality again. Yes, I was in pain, but Cecil had her Eagle Eye on me and made sure I took care of myself and I wasn't going to let anything take this once in a lifetime family gathering away from me. Monica had MS I think and was in a wheelchair. She was a pacer, lol, and a talker. I adored her. She was our cousin Jimmy's wife. That wheelchair went back and forth and back and forth. She apologized. She said I can't think if I don't pace, lol. We all laughed at that. She was adorable. Joan and her daughters were adorable too. Now I've gotten in contact with Joan's grandson. I'm very excited about that too. Anyway, I don't know how we would have gotten through those years without Cecil and truly we are closer than ever and we now are best friends. It is wonderful!
I had a mentor after I joined that support group. She would come over at least once a month. She lived in Indiana. She also had full-body RSD. She was great and pulled Bob to the side and explained RSD to him. It helped him a lot. When we had the 'issue' with our daughter and the church, it was Pat who found out what was wrong just in the nick of time. And it was Pat who explained RSD to Dent so that he could understand. We owe a LOT to Pat. It was Pat who had me start me going to Dr. Fitz, my current Pain Management Doctor. During our last trip to DC, Pat changed and we had a falling out. She tried to take over my life and I wasn't going to let that happen again. Pat who was a nurse, has since assisted her husband, who had MD and was in the last stage, in his suicide. Then she went home and committed suicide herself. They had made a pact. She said she couldn't live without him. They left 5 boys behind. One was in college, 2 had MD, one they adopted, and one of the boys with MD, the youngest boy, it was his Graduation Day. I will never understand that! She said she had lived with RSD for 15 years and didn't want to live with it any more. I still don't understand. Yes, she was going to lose her husband, but she had 5 boys who needed her. Well, it is not my place to judge and suicide is the #1 cause of death with RSD. May God Bless the boys, now men, she left behind.
My current Pain Management Doctor is the one who put my RSD/CRPS asleep, thank the Good Lord! It finally went 100% to sleep on the day of my nephews wedding, 4 1/2 years after it started. It took me 45 minutes to figure out what was wrong. I remember waking up, jumping, yes jumping out of bed and racing around like a crazy woman getting ready for the wedding. Bob looked at me funny. I said what? and he said nothing. I told him something was wrong, but I didn't have time to figure it out as I took all 22 of my pills, including pain meds. We went downstairs and I told everyone how wonderful they looked as I raced around the kitchen. Now usually I just went to the chair and sat down. I said, yes I know something is wrong, but I don't know what it is and I don't have time to figure it out. My brother said you don't know what is wrong? I told him no. He said stop, come here and sit down and think for a minute. It will come to you if you sit down. So I sighed and went to the table and sat down and looked at him. It hit me! OMG Febbie! I don't have any pain! Everyone laughed and cried and it lasted for 7 glorious years!
Six weeks after my RSD was put to sleep, I went to my Pain Management Doctor for a check-up and I told him I had a different kind of pain in my legs. He sent me to a Rheumatologist. She told me I had Fibromyalgia. I told her no, I didn't want that I just had RSD put to sleep. She said I'm sorry but I can't change the facts. You have Fibromyalgia. I went to the car, raised my hands in the air and said 'God I don't appreciate your sense of humor. Now, just what do you want me to do with this?' His answer was immediate and loud! 'EDUCATE!' Well I have learned over the years, to answer when he calls, otherwise He hits me with a 4x4 board and I pay for it. First though I had to learn what Fibromyalgia was. My background is in research. My masters is in Extension Education, but it started out in Genetic Engineering and you do a LOT of research in Genetic Engineering. I learned to love research and so I do a lot of it. Then as I was doing that I was also learning what was working for me in treating my own Fibromyalgia, or rather I should say I was learning what wasn't working for me. At the same, I was weaning myself off of high doses of Hydrocodone and Oxycodone. Fortunately, I was not addicted, but I was dependent and so I had to be very careful while work off of both of them with the Doctor's supervision. Hydrocodone was easy, so I thought Oxycodone would be too. What I didn't think about was the fact that while working off the Hydrocodone, I was still on an opioid, so it wasn't really working off of anything, I was just lowering a dosage. duh. Working off the Oxycodone was another matter.