A new fiGhT!!!

For years I've been going through a lot pain and as a result continuously going in and out of the hospital. Both the doctors and nursing staff have grown weary of my visits. I've been inactive in my blog posts and maintenance of my Facebook page because of how ill I've been. I guess I was just burnt out and needed some time to regroup.

I've been wondering for years now why my form of sickle cell anemia is specifically worse than the average sickle cell sufferer! I recall my freshman year in college asking the doctor why my crises (pain attacks) have evolved so aggressively. I remember being so heavily fatigued that I could not stand to go to my dorm room, let alone my classes.

Without my knowing, that was the beginning of something new. I have been saying for years now that it felt as though there was something else wrong with me aside from the sickle cell anemia but no one took heed to my insight. Instead I would just continue to go in and out of the hospital and bear the doubts from my doctors and nurses that I was truly in pain. I always cringed at the idea of going into the hospital and feel like I had to prove to everyone that my pain was sincere.

Well in my most recent hospitalization, I had really swollen legs, knees, and feet. My knees were in especially intense pain. So much so that I couldn't walk without the aide of a cane or wheelchair. Prior to my hospitalization when I would go to the store I would have to use the store wheelchairs for mobility. The experience of walking around with such aides was not only something I had to get used to but it was also an embarrassing experience. Getting many looks from the other shoppers especially my peers would make me wonder what they were thinking. Having those thoughts as I look back now it's embarrassing that I was that self-conscious!

My knees were so swollen that the doctors had to numb an area of the knee and use a large needle to extract some of the fluid that was in it. The fluid was tested and came back clean. There was no infection. So what was causing all that pain? My pain doctor also questioned the symptoms I've been having and why my pain just doesn't seem to let up. Even with large doses of medication I don't seem to get relief. 

Well, my pain doctor whom I truly respect and am grateful for suggested that I get a consult with Physical Therapy, and Rheumatology. Physical therapy was unable to help me but Rheumatology surprisingly was able to help. More so than I expected. They ran some physical tests on me and asked me a lot of questions! Finally they were able to tell me what was wrong. I was diagnosed with Fibromyalgia! Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.

       

I know right?!? Unbelievable! So I don't only suffer from Sickle Cell Anemia but Fibromyalgia as well! Sickle Cell I know about. I've been fighting that battle since I was a babe. I know almost nothing about Fibromyalgia (Fibro) but believe this--I'll learn! Sickle Cell is a hard, knuckle-down fight but I fight. I might a well take Fibro down as well! 

When the doctor shared my diagnosis, I'll be honest with you. Streams of tears were just rolling down my face non-stop for about ten minutes. Then I wiped my tears and got to work asking all I could think of about what Fibro is, how I distinguish between Sickle Cell and Fibro, what meds I should take etc. 

So for years I've been suffering from this disease without knowing! Many things in my life began to make sense now with the diagnosis! For instance, the heavy fatigue I would randomly get while in college, the increased pain, and like I've mentioned before--why the pain meds didn't really work on me sometimes. I just kept reviewing everything in my head trying to make heads or tails of it. When I shared my new diagnosis with my pain doctor, he too figured it could be Fibro I was suffering from but questioned it. Thank God he requested the consult. If not I would still be in all this extra pain with no way to explain it--to deal with it. For a couple of years now I've been felling like the doctors and nurses didn't believe me. I've felt that way more this year than any other year. I cant get that day out of my head. The day two doctors came to my room to pretty much reprimand me in front of my mother and another patient in the bed next to me for coming to the hospital a lot. They told me it needs to stop. The said I should just deal with the pain at home. Ugggh, that hurt so deeply. Even now as I share this it hurts but now for them to see that I was not making it up, I was not seeking medication, I was not crying wolf. I was in a lot of pain, my pain was valid, they should've respected and considered the best from me--their patient, they ought to show more respect and consideration. If they hadn't dismissed my pain they would've caught this diagnosis earlier!

These are some heavy things that I'm going through but the fact of the matter is there are a lot of us Sickle Cell (SS) sufferers that have dual diagnosis! Many have Lupus and SS! I want you all to know that you are not alone no matter what disease! I know the fight is hard, I know it's overwhelming, I know you want to just give up sometimes. That's all normal and very Human of you! But know that there are others going through the same fight! Go to my FaceBook Page! Go to the upper right hand side of this page and CLICK On my FaceBook Page Icon or On FaceBook--search for: WANDE FIGHT'S FOR SICKLE CELL ANEMIA and leave me a post or write me a message and we can talk about it. Just know that you are not alone and the things that you feel are valid!