Mental Pain Management
Sometimes being in pain from Sickle Cell crises can take a toll on you as a person mentally and physically. For me, I get depressed and I can’t think straight because I feel so bad all the time. For some reason I don’t have a lot of hospitalizations but I use too. Staying in the hospital for weeks at a time, every nurse on staff knows your name and when your coming. Now when I do go to the hospital I very often make the mistake of going to a local hospital where not all the staff is too familiar with Sickle Cell Disease. Sometimes the nurses in the emergency room don’t quite know how to make you feel as comfortable as you need to be.
My Sickle Cell doctor is a the University of Illinois at Chicago and that’s where I should go when I have pain crises because they know me and try to take care of me as best as they can. Now something that the hospitals are doing are getting together research studies of the their Sickle Cell patients so they can be identified if they come in to the ER. University of Illinois at chicago Sickle Cell Center has created a separate emergency room system for Sickle Cell patients, promoting faster pain relief in stead of waiting hours in the waiting room, then having to answer a million questions by triage and others nurses. They already know why you are there and can get things together for you faster. I have a Sickle Cell card with an ID number on it, I’m suppose to carry it around with me at all times.
I feel like they are really trying to change things around for us and for the families. Does anyone else have a card or is in a reasearch study already? Feel free to share with us your experience.
Research studies take time and the research staff does follow up surveys with you to keep up on how many pain crises between doctor visits and how much medicaton did you have to take and did it work and did you have to visit the Emergency room. At first I didn’t want to sign up but then I thought to my self stop being selfish and contribute to the cause of Sickle Cell they are only trying to make things easier for me and others like me. And to be perfectly honest with everyone I didn’t like support groups. I didn’t want to be depressed and start crying listening to other people who suffer from Sickle Cell and for a along time I just didn’t want to talk to anyone about my disease. That was me being selfish again. But I have learn that it is good to talk to others because there is always someone worst then you that will encourage and and have better spirits then I could ever have. What a very humbling expericence to go through!!!
If you have the opportunity to by all means join a Research Study. It will help you in the long run. Join a Sickle Cell support group anywhere you can find one because it help to mentally expose all the hurt that you go through and you will soon know that you are not alone!!!
One Research Study offered by the Sickle Cell Disease Assocation of America is paid and if you want to sign up for that just go to www.sicklecelldisease.org Right there on the front page when you scroll down a little bit in bright red bold letters it says “WE NEED YOUR HELP”. It’s not exactly the association that is doing the study it’s the Adult Sickle Cell Quality of Life Measurement Information System (ASCQMe)
Project (that’s a mouth full), they want to know about adults living with sickle cell. You have to call a number they offer to sign up for the research study.
I would like to sign up as well but I don’t want to do it by myself. By now you should know that this is another activity and you need to be a member of this support group. Once I get 5 people that want to get signed up for the paid research study we as a group can call the number they offer and sign up. If you have done this already share your experience with us so as a group we can be encouraged too!