40 Year Career and not one sick day, then my RA diagnosis
After reading all these stories, mine may not be that unusual but it has been devastating for me.
I worked for the same company as an Administrative Assistant for 40+ years. Seriously, I never had a sick day, never knew what pain was. I was very active with my work, family, church, exercising and traveling. In March, 2014 I went in for my routine mammogram. 21 perfect mammograms and the year I turned 62 I am told I have breast cancer. The good news is the cancer is small, has not spread and only required a lumpectomy and radiation. That should be the end of the story.
My surgeon recommended what is called Mammosite. Instead of radiation spread out over weeks I could opt for 10 treatments over 5 days. We had plans to fly to Alaska so my husband and I thought why not go for this plan. The one caveat, I had to wear a tight bra 24/7 for 9 days to hold in the tube for my radiation treatment. Every day when I went for treatment I told the nurse I thought the bra was too tight. She responded that it had to be tight to hold the tube in place. I did not know any better and just thought I would get through it. After my radiation ended and the bra came off, my shoulder muscles were tight and aching but I thought, give it a few days, maybe a massage and the tightness would go away.
Within two days of removing the bra, the pain in my neck and shoulders was excruciating. I immediately went back to my surgeon and she said, “probably some arthritis", give it time. It did not ease up so I went to my Radiation Oncologist and he said the same thing. Over the next days, the pain would come and go and it would ease with Ibuprofen. We kept our travel plans to Alaska with me on over the counter meds all week. Sitting in the Anchorage airport waiting for our return flight I developed needle like sensations in my left hand. It came from nowhere and felt like millions of needles stabbing me. I was almost screaming in pain. We debated on whether to delay our flight or try to get home. I opted for home. I spent the entire 12-hour flight silently screaming and crying and holding the makeshift hand splint my husband made. When we arrived in Charlotte, NC we went straight to the Emergency Room. After 4 hrs. the Dr. said, "I think it is a sprain" and gave me pain pills. The pain finally subsided on Sunday, two days after it began.
I will try to make the rest of my story short. This happened in May, 2014. The needle stabbing in my hands continued, alternating hands. I saw my Family Doctor who thought it was neurological. I saw a neurologist who after two months said, "you need to do neck exercises and I will give you stronger pain meds". I was crying with pain when he said this (he was supposed to be one of the best in Charlotte.) I had no idea what was wrong with me and no one could tell me. Flash forward to Sept. 2014. My pain was so bad I could not sleep and was not able to drive to work. My husband had retired by then and was driving me. We decided I could not keep going and since I was 62 I could retire. I was barely functioning. The bad news is I should have fought for a diagnosis and went out on disability but the pain was clouding my thinking. My employer had eliminated all retiree benefits so after 40+ years I got nothing, no Insurance, nothing. I went on COBRA which is very expensive, and continued seeking someone to help me with my pain. I went to a Chiropractor for 12 treatments which did not help. I went to a pain clinic for two injections which did not help.
By then it was the end of 2014 and I did not know what to do. In January, 2015 I developed a rash on my right arm, same side as my breast cancer. I went back to my breast cancer surgeon who finally said, "let’s get an MRI". The result was that both my shoulders were 'crushed'. Geez, how did that happen? I finally saw an Orthopedic Dr. who determined I needed total shoulder replacement on my left shoulder. I still had not been tested for RA so I went with his opinion. I thought the shoulder replacement would fix my problem/pain and I could get on with my life.
I had the shoulder replacement surgery in June, 2015 and began 3 months of physical therapy. Everything seemed to be going well until the 3rd month of therapy. My hands and feet were throbbing with pain. I was going into therapy with braces on my hands and feet asking why I was hurting so much. The Therapists' would say "oh, probably nerve damage, it will ease over time" and then continue with my shoulder therapy. The last week of therapy, Sept. 2015, I could barely walk. I went back to my Family Physician and sat in his office sobbing. I did not want to live. In 15 months after 62 years of being healthy, I was diagnosed with breast cancer, suffered debilitating pain, gave up a good job and had total shoulder replacement. He looked at my bent hands and feet and finally ran test for RA. Two weeks later, he calls me at home at 9:00 pm and says, "I am so sorry, but you have RA". Normal range is 0-30, my inflammation level was 83!
I was upset but relieved that after 16 months I finally had a name for my pain. I saw a Rheumatologist in Oct. 2015 and he confirmed the RA diagnosis and told me I should have never had the shoulder replacement. I can't undo anything but I feel let down by the entire Medical profession. None of this should have happened. Why was I not tested at the beginning when I reported my pain? I gave up so much but as my husband says. "we can't go back and we must go forward with what we know."
I have been working with my Rheumatologist for 9 months and this is an entirely new world for me. Most of my family and friends do not understand. They think, "what is the big deal, everyone has arthritis." I try to explain there is arthritis, then there is RA, but I am finally realizing few people get it. I post on my Facebook page trying to educate people but they still don't get it. I am finding that one visit and one pill does not 'fix' everything. RA can change from day to day and I have had more Dr. visits in the last 9 months than my entire life prior to this! Fortunately, I have an awesome husband who is in good health and has been by my side from day one. Currently I am on Methotrexate and Prednisone and just been told I have tendonitis and bone spurs in my right foot. Most days are good for me and I have not given up my dream of traveling. I do not like to think of the side effects of RA treatments. MY Rheumatologist told me the benefits outweigh the risks and I am going with that. Life is still good, I just had to back up and realize that although my life is different now and my plans have to revolve around RA, I am going forward and living my life to the max! And that, folks is my story....
Do you feel guilty when you need to rest?