One summer afternoon I was playing with my youngest son who jumped on my left shoulder and it was dislocated. A few months passed and one day my left hand turned blue and was going cold. The pain was unbearable so I went to the ER. After a few weeks I was told I needed to have surgery. After my last surgery I was finally diagnosed with CRPS/RSD (Complex Regional Pain Syndrome). I didn’t know what it was nor did I understand what this condition/disease really meant for me and my life. Before the surgery I kept telling different doctors that I was experiencing pain and it wasn’t normal and the usual response was that it was in my head. Back to my recovery time I was going insane because of the constant pain I was experiencing. Some days I wanted to cut off my arm and hand because the pain was that bad. Maybe if I go back to work and be around people then it will go ahead. The thoughts and pain I felt would disappear. How could I possibly work with my hand looking like a cartoon hand that was blown up with air (swollen to the point it turns colors). I know I will get something to hide my hand in so no one will know. Yeah right. More questions were asked because of the glove. So I explained that I had surgery and my hand still wasn’t healed. Little did I know that this was all part of having CRPS/RSD. Going to physical therapy, the pt said I had RSD and EDS. I was like what hell is that? Yes once again I felt ignorant to this. I went back to my doctor who did the surgery and she said she believes I have CRPS/RSD. So this time I asked questions. She gave me vague description and stated there were four stages to this disease. She strongly recommended that I have a nerve block. I couldn’t at the time because something inside me told me to say no. During all this time which covers about seven months I was on some many different medicines that was either making me feel weak, drowsy, incoherent, and sick to my stomach. I had three steroid shots, on 3 different steroid oral medicines along with pain killers. During that time no one thought to do a full blood work up. Back to the doctor who did the surgery. Since I declined the never block she stated that I couldn’t have CRPS/RSD because those that have the disease are in extreme pain and most often suicidal so she had physical therapy stopped. I was in extreme pain but I was accustomed to hiding it. Besides she was the one who was shocked that having my carpal tunnel, and trigger finger (on four fingers) surgery that I went 57 minutes without complaining of the procedure. I just wanted the pain to be over so I thought this would fix my problem. Boy was I wrong. After the surgery I lost full movement in my left hand. I am/was left handed.
Now the full blood work up would have shown some issues that were going on with my body. My ha1ca levels shot up to the max. I assume the scale they use for ha1c is between 0-12. My ha1c was at 12. My primary doctor automatically stated I was a diabetic. He also stated that my blood pressure was way too high (200/140). I told him that my blood pressure would be up because I don’t sleep because of the pain and all the medicines I was prescribed was causing this. He stated impossible. He has never seen a patient with glucose that level from medicine nor could pain cause my blood pressure to rise. Of course this made me mad and I was ready to let Kodiak out to prove pain will cause his blood pressure to rise. He put me on more medicines to lower my blood pressure and glucose levels. Still in pain I felt no one was listening. So I kept it moving by working and trying to block out the pain. I also began my own natural detox to get all of the medicines out of my body. Blood pressure is back down to 121/80 and glucose is down but still high to me which currently at 6.3. Over the next 7 months I kept asking to see a neurologist because I felt something wasn’t connecting in my own mind because nothing was making sense. Also someone else suggested the same. I was finally referred to a neurologist after I told my primary doctor his service sucked because he doesn’t listen and neither has anyone else. Well the neurologist tested me and of course there are issues 3 good nerves left in my body go figure. Ok that explains part of the problem but not the pain which everyone associated with diabetes. Now really confused, because diabetes from what I knew shouldn’t cause swelling of the hand, tremors in my arm and hand. But they stated being a diabetic can cause neuropathy. Oh yeah right, that’s the reason for my hand now being in that condition. I think not. Let’s try again. So I was referred to another orthopedic doctor to have a look at my arm and hand. At first glance of my hand he stated that I have “CRPS/RSD.” Okay here is those letters/ words again. He gave me material about it and I was really in shock. He suggested I seek counseling because I seemed happy and calm. He also suggested the infamous nerve block also. Here we go again with the blocks. I was in pain and at a loss driving home. I searched for support groups or people that may have this disease. I was lucky to find an online group and was blessed to meet some in person.
I read different individuals stories or heard their stories in person. It gave me hope. We all shared the same feelings and how no one seems to understand our pain. We all avoid crowds because of being labeled as we are crazy because no one can see the pain. No matter how much we try to explain people just don’t get it. I was lucky to find one individual in the group who also helped me find a local group. She is my CRPS/RSD angel. She took the time to explain it all to me. Though she isn’t a doctor she had a wealth of knowledge. To me she was the doctor I been looking to help me understand and learn. I was encouraged because of her story and how she continues to fight. Of course I had to show my appreciation by writing a poem/story thanking her and that she was an angel walking around on earth.