Support Group
DON'T LET SICKLE CELL KEEP YOU DOWN! For a long time I was scared to share with anyone that I have Sickle Cell Disease. I didn't want to talk about it and I just deal with the pain. I was diagnosed with Sickle Cell Disease at the age of 2. Now I'm ready. I'm ready to raise much more awareness than there is already. While there is the SICKLE CELL DISEASE ASSOCIATION OF AMERICA as a higher resource…I'm ready to do my part and contribute to them and many other people living like me. I'm determined to raise a lot of money for cures that are going to take the pain away and that everyone with Sickle Cell Disease can benefit from...not just people with a lot of money. Unless you have Sickle Cell Disease or are in the medical field dealing with it everyday...there are still people unaware of what Sickle Cell Disease is and what happens to the millions of African American and Hispanics who live with it every day.
In order for us Sickle Cell patients to get the treatments we deserve we need to come together and try to stop some discrimination in the hospitals. I'm talking about the nursing staff and some uneducated hospitals that try to treat us as best they can in the emergency rooms but don't have a clue to what they are doing and accused us as being addicts because the only pain relief we have for the moment are opiates (Narcotics) such as Morphine, Dilaudid, Tylenol 3 or 4 w/ codeine. As for me, I am lucky ask me about how I have NEVER had a blood transfusion and how I look like a normal HEALTHY person. Until I go to bed at night and wake up screaming because my pain crises are so bad sleeping is out of the question. I don't like to go to the local hospital so I deal with the pain...with medication and hospital being my last resort. Medication makes you numb only for so long until it whereas off but then you’re stuck with the side effects of headaches, nausea vomiting and so on.
Enough with the bad let us talk about how I can encourage others like me to change some things for ourselves. That’s what this is about finding ways to work through the pain. Some alternatives that help at home are hot baths, heating pads, creating distractions so that your mind won’t be on the pain. These are physical things I do when the pain is starting…Lose your self in a good book, emotional things like talk to someone else about what you’re going through to lessen stress. There are people out there trying to help we just have to know where to look. Join a research group and they can help with the hospital visits.If you have any suggestions feel free to contact me and give ideas. I want to know what other SICKLE CELL CARRIERS are going through so we can create a support group. Maybe even create a way to divert our pain or take our mind off severe pain. Lets get started!