Hi all, I have only joined this site a few weeks ago and all I can say is that I'm hooked on it. People sharing their struggles, words of encouragement....It makes one feel "normal" and not so alone. One suffering with RA or any other autoimmune disorders {that's what I call them}, one can't explain the way that they feel to others. Us warriors are in a league of our own! I use the term Warriors, because that's what we are. My RA specialist has on numerous occasions has commented that "a normal" person would not be able to tolerate the actual pain, treatments, exhaustion...ANYTHING that we do. She has had men drop when she has had to inject them with cortisone in their joints. OK ..its not pleasant , but not that bad!!
So let me get onto why I decided to post this...……..
When I was 20 yrs old, I am now 51, I stared getting the most horrendous headaches that I could not function. I went to a Dr and he just said it was a migraine. I wasn't satisfied with the answer, as they were so severe. I couldn't function. He brushed me off and gave me a neurologists number. I made the appointment and went to see him. He checked me out, and at that time encephalitis was going around, I think that was why I insisted in seeing a specialist and never took the GP's word. The neuro did his examination and decided to do a CAT Scan on me. Now in South Africa the 1st MRI machine had just been installed in the hospital that he was at. He then required me to have a MRI where they discovered I had a aneurism. I was in shock, but I knew something was not right, and that's why I insisted that I go to a specialist. I was booked immediately into hospital. The neurosurgeon plus the neurologist both came to visit with me to schedule a brain op. So there I was a 20 year old with long blond hair...there is a reason I am telling you about my hair...it was my crowning glory!! Whilst in hospital I needed to go and call my mom. No cellphones then. I went into the nurses station to use the phone, I remember this as if it was yesterday, I was so traumatized by this. There was a woman in a wheelchair that had just had brain surgery. Her head was clean shaven and so very swollen. My heart sank I just thought to myself....my hair!!! I made a decision then and there that I was not going to have the op. How conceited I was at that time or rather I should say insecure I was with myself thinking that my hair was who I am. Ten years later and nine aneurisms later I was told by another neurosurgeon that it was a life or death situation. My operation was meant to be a 4hr op which went to hrs. I was meant to have been in ICU for 2 days. 2 days went to a week. I thank G-d that I never had the op initially as 10 years later the medical equipment was far more developed and I had a world class neurosurgeon operate on me. I am in the medical journal with regards to my aneurisms,
Perhaps 5-6 years later i started getting this indescribable pain in my legs. My feet felt as if they were on fire......I couldn't walk with shoes, I couldn't stand or sit. I was checked into hospital an they couldn't find anything wrong with me. I was just exhausted all the time. I was sent from one specialist to another. I went to see a Prof of Rheumatology. He did some tests on me, we chatted and he was the first person that actually knew what I was describing. He handed me pages and pages in a brown envelope and told me to go home and read about what I have.....what do I have????Fibromyalgia....do you know it actually comes up in spell check now …..before it was a figment of our imagination. I went home and read with tears running down my cheeks...….IT'S NOT IN MY MIND. WHAT I FEEL IS REAL!!! After a while work was becoming impossible for me as the brain fog was setting in. I had to carry a notepad around writing everything down as not to forget, so I wouldn't get fired. I was a PA to a board of directors. The pressures of work and life had burnt me out...Eventually I was medically boarded as I was not capable of doing my job. From being OCD with my job and a control freak with everything I now had no control of my life whatsoever.
Fast forward seven years .....my body ached differently this time. I could barley get off a couch, every joint in my body ached beyond the pain I knew. I was stiff, swollen and in agony. Surprise, another specialist visit which I was diagnosed with severe RA. I burst into tears not me not again, I just cant do this anymore were my thoughts. I never actually knew what RA was, but to be diagnosed with another condition I just couldn't handle it. My Rumy is to me the most incredible, kind and caring DR. She discussed all the meds I was going to put on. I started with Methotrexate pills then had to change to injecting. After months and months of no success I was eventually given the option of being one of the 1st here {in SA} to be on the trials for biologics. It was very daunting to me to start such a unknown journey , especially when you are given what can happen to you on them. I asked a family member of mine who is a Prof of Endocrinology please to guide me as I was actually now petrified to start a treatment that can cause cancer!!! She did some research for me. Her answer regarding the cancer, is that if there are cancer cells in your body they are there already. It will not cause cancer. Whilst I have been on numerous biologics, it has taken me years to find one that eventually started working. I am on Actemera at present and its working well. I will most probably be having to change my biologic as I had a back op about 3 years ago and apparently I have arthritis in my back/hip. Actemera is not suitable for assisting with that.
Unfortunately I am a Murphy's Law person. From the all the meds, my body want satisfied with RA and Fibro it decided they needed a little friend called Lupus, it's very mild but shows up when tested. I have an incredible neurologist that I have been with forever. He put the biologics in a nutshell for me...I complained about them often to him and he said that if it wasn't for them I would be in a wheelchair by now. That put everything that day into perspective for me. I know I complain about being 10kg fatter, I have infusions every 28 days, yes there are so many things that are negative, but the most important thing that I have to be so thankful for is that I'm walking and to be thankful just for today. One step at a time and one day at a time
Here I am today and you know what I am actually ok. Yes I get tired, yes my pain is sometimes so unbearable. Yes I have major sleeping issues.Even with days staying in bed with no energy and the non relenting pain in every part of my body But you know what us Warriors we are resilient and we do survive.
Disappointed with my hospital appointment...
At last someone listened. My visit to the rheumatologist
One week till my Rheumy appt. scans and biologic nurse... following a Methotrexate failure...
