My name is Chayla and I am a proud grandma to three and mom to three. I live in Fargo, ND and am single after 20+ years of marriage. I was diagnosed almost 2 years ago now.
Here is my Rheumatoid story.
The mornings were beginning to be very painful and stiff. I was confused what was going on, I felt it was tied to my previous carpal tunnel release surgery or maybe just over use. I have been in the medical coding and billing industry for all my career. I had just had gastric bypass and then had to have two hernia repair surgeries and was on a feeding tube due to malnutrition and malabsorption. I finally called and made an appointment with my primary and said to her that I just don’t understand why my hands and especially fingers hurt so bad. My feet were also hurting. I felt as though I was 100 years old. I just needed some answers. She decided to do some lab work and did an exam. She said my joints were very inflamed. She would have had me take NSAIDS, but I cannot take them due to Kidney Donation 6 years prior. About two days later she called me (always scares me when they call themselves) she said my Rheumatoid lab work was positive and I needed to see Rheumatology. They got me in the next day, another miracle, to see a doctor who has been in Rheumatology for 30 years. I was nervous, sad, scared out of my mind. You should never google what you’re going to the doctor for. I was dead or in a wheelchair if I went off google.
I went to the doctor and he was the nicest man. It felt as though my grandpa was helping explain all this to me. He held my hand and showed me how I was going to give myself Methotrexate injections. He made sure every question was answered before I left. He even called me after my first injection that evening to see if I was doing ok. The telling my family that I had been diagnosed was very hard. They felt sorry for me and I told them I didn’t want pity. I wanted support and understanding that I don’t have all the answers and that I am trying to also gather information and adjust to the diagnosis. I was on Methotrexate for a few months when my liver enzymes lab work was in a very dangerous area and so it had to be discontinued. They tried a few other medications, but my liver enzymes kept raising to an unsafe area. So, off every medication possible was the answer for now. A liver biopsy was ordered, and the panic began again. The biopsy went fine. It was a bit painful after, but I kept telling myself mind over matter and that God has this. I didn’t know exactly what to expect when the results came in. My liver was toxic. I was at the beginning of Cirrhosis. At that point I lost my mind. I was so scared. This was three weeks ago, and they have taken me off almost all medication to see if we can get a base line. The flares started at midweek one after biopsy and haven’t stopped. I pray often and pray for all of you.
Right now, what RA tips would most be helpful for you?