I’m so grateful I found the CSRF website. I have a long story and I haven’t been able to find a single person who understands what I am going through. Even though my story is a bit different, I would love for someone to reach out to me. I’ve had rheumatoid arthritis (RA) since I was 12 and I’m now 31.
I was always very thin and fit and the summer I got pregnant we went to Hawaii and hiked and zip lined. We had a lot of trouble getting pregnant and I thought everything was perfect when God gave me my son. Unfortunately my RA severely relapsed causing me to be put on 20-25mg/day of prednisone and Plaquenil just to try to relieve a small part of my intractable pain and swelling. I was on bedrest and did everything I could to keep my baby safe and growing. Unfortunately, I became severely preeclamptic and required a c-section.
I thought everything would turn around as soon as I had my son, but my recovery has been very challenging. My RA was completely out of control, I was trying to heal, nursing and doing most of it completely on my own. When my baby was 3 months old, I developed medication induced Cushing’s. By that time, I’d gained 120 pounds and was in incredible pain with stiffness and severe fatigue. I also had to start working full time. You can’t imagine how much I was dealing with. It is only through God’s grace, wonderful doctors and my miracle baby, that I survived it all.
My baby is now 24 months old and although I’m so happy, I wonder when the Cushing’s will end. I know recovery will take a year or more. I’ve tried to research this, but I haven’t been able to find anyone with a story like mine. I would love to communicate with others who have been through recovery so I can gain knowledge, tips, and support.
I am finally off prednisone and on hydrocortisone, which will hopefully let me get off steroids more quickly. I was an ICU nurse and am now working with cancer research so I do have the knowledge base, but I had extreme difficulty finding intelligent and accurate information. I am very thankful that I found the CSRF website.
I stopped prednisone in October and my Endo originally suggested that I would be off hydrocortisone in February. I suffered every single side effect of Cushing’s complete with memory impairment and not being able to think through things. I am thankful that this is now much better and doesn’t bother me as often. I would very much like to be in touch with others to share information, tips and coping strategies. Please contact me!
Newsletter: Spring, 2015