Its been a bit since I have stopped by to chat. A great deal has gone on….
I have been struggling with my Autoimmune situation. Was hopeful that Remicade was going to be my saving grace. Umm… nope. Not even close. After starting it I started to experience 3-4 days of puking my guts out and horrible migraines. Not sure which was worse – puking my guts or feeling like my head was going to explode at any minute. It was literally 3-4 days of hell followed by days of incredible fatigue. I couldn’t function. I couldn’t be a mom, a wife, a employee, or a person for that matter. I begged my Rheumatologist to pre-medicate me before my infusions. The last infusion I had she finally agreed – but I only feel that she did because my husband came with me to my appointment and listened to him talk about how much he hates to see me in this kind of condition. Like I was faking it. Jesus. So we parted ways.
I spoke to my primary care who was very concerned about my worsening migraines about how things were going with my Rheumatologist and my condition. I hadn’t been to work in months and I hated to be at home. I just wanted to get back to work – back to where I was a year ago working 2 jobs, enjoying life with the family, traveling etc. I can’t walk through Sam’s right now without being in pain – and don’t get me started about trying to cook with my favorite fry pan. Sigh….he suggested we knock two birds out with one stone and sent over a referral to the Mayo Clinic. Thankfully because I have been seen there before many years ago it was an easy process and I was able to get in real quick.
My experience with my Neurologist has been incredible – an hour long consultation where he asked me tons of questions I had never thought out in regards to my migraines. He was tossing a few ideas around at what could be causing my debilitating migraines and immediately sent me for blood work and further testing. My Rheumatologist on the other hand has not been such a positive experience. Because I have been on steroids for an extended period of time, he could not appreciate my joint pain. He sent me on my way with a return visit in a few weeks once I was able to lower my prednisone dose.
Lower my prednisone dose and go back to work. That’s funny! Apparently he has never had joint pain in his life!
So I tried to do what he asked but was unable to get it down as far as he wanted. He still told me that he didn’t feel that I had RA and to do the best I could to get off the Prednisone and go from there. Fast forward 2 months. No prednisone and my wrists are swollen, and I walk with the gusto of an 80 year old. Because of this I have had to change jobs. No longer can I walk the halls of the hospital ever night for miles. No more can I cook, shop, enjoy traveling with the family. I have become a shell of my former self. I don’t want to sit on the couch collecting a disability check. I don’t want a handicap sticker for my car. I want to be able to do anything and everything that I was able to do a year ago. I want my DAMN LIFE BACK!!!!!!!!!!!!!!!!!
So why is it so hard for Rheumatologists to put themselves at your level. To try. To care? Why should I have to put myself in this kind of shape to PROVE to him my condition? If another fellow Rheumatologist diagnosed me at one point, why do I have to constantly prove myself to the new doctor???? So in the meantime I have lost so much – I have been unable to take care of my family, put our family in deeper debt – all because its my desire to be a functioning part of society. These months have been hell. I have had to prove myself to my doctor, my insurance company – I feel like I have lost my mind. I am beginning to feel like this is all a figment of my imagination. That its all in my head I can’t walk, or my joints are swollen for no apparent reason.
Healthcare shouldn’t have to be this hard! If all I wanted was an Rx to sit on the couch and collect a check every month, I could understand, but all I want to be able to do is work, take care of my family and enjoy life.
Off to the Mayo Clinic in a few hours for some more good stuff with my Neurologist and an MRI of my hands/wrists for my Rheumatologist. More late!!