Sikcell: People living with Sickle Cell

We still Hope

This stupid disease

Hi everyone, I am Nikki I am new to this. I have hgb SS. I am a 36 year old female. Ihave had 4 strokes, and I have CHF and have compression fractures in my back. I live in the Washington DC metro area. I have a college degree and worked full time for about 9 years. I started my own business. I still work when I am able to but I have been getting sick alot lately. I hide my pain from my family because I hate hearing them tell me that ohhh its only in your head. I am soo tired of them telling me that I only take pain meds to get high. I have an excellent doctor that has a sickle cell clinic in his office. He has an excellent staff. He has an infusion program where we can go and get pain treatment and fluids. We get our labs checked and our scripts. At the office everyone there is just like me. They understand my pain, frustrations, and fears. But then I come home to hell. I don't understand what it means to be without pain. That is a concept that I cannot comprehend. What is " NO PAIN" I wake up in pain, go through the day in pain and then to top it all off go to bed in pain to try and get 2 or 3 hours of sleep just to start the cycle over again. No one in my family had this terrible disase. I am sooo happy of that. I wouldn't want anyone to understand the pain that I go through on a daily basis. Although I don't want them to understand this pain i wish that they can feel my pain on my best day. My best day is when I can take my oral pain meds and I get 3 hours of sleep. Maybe then they wont be so quick to tell me that I am a drug addict when I go to a Drs. office to get help with unbearable pain. The only positive thing about this disease is that I have met some of my dearest friends who also go through this hell. The most important thing that I learned is that I know for sure that if I did not have this stupid, dumb, painful disease I would not be who I am and done the things that I have done and most importantly know GOD the way that I do.

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Comment by Twyla Clark on September 27, 2010 at 2:40am: hey Nikki! I am SO HEARTBROKEN to hear that your own family says things like we have to hear from stupid nurses and doctors to u! I am SO SORRY! My baby sister that just passed away used to have to deal with the same mess coming from her family and I saw how much it hurt her and I am sorry that you have to go thru that too. Me & my sister had the same father and we were raised by two different families and I thank God that I didn't have to go theu what she did! My heart broke every time I would see them make my sister cry and there was nothing I could do but bethere for her and that's what i did. My family even kinda took her in and treated her and her kids the way they deserve to be treated!!! Now that she has passed away, her family has been taking her death VERY HARD! I dnt feel sorry for them cus they treated her so bad and always told her that she was not hurting that bad. Nobody knows our pain but us! I wouldn't wish this pain on my worst enemy! Again, I am so sorry and I am prayin for better understanding from your family!

Comment by Sickle Cell Warrior on June 24, 2009 at 7:41pm: Hey Nikki,

Welcome to the group. It's so sad that your family and friends cannot understand or realize what you are going through. At least you have been able to get emotional support from other places. Have you tried alternative remedies to control your sickle cell pain? I used to have daily pain like you, and I've been using a combo of Nicosan and L-Arginine. I've been pain free for a little over a year now. Sometimes it's the 'not so obvious' remedies that work for us with this condition. Please drop me a line if you ever have a question or need to talk. Hang in there, and stay strong mentally. You're in my prayers.

Comment by Nina on June 21, 2009 at 11:21pm: Hi Nikki,
Welcome to the community.
It's hard to believe that your family doesn't understand what you feel. My son also has SS and since the first time I learn that he has the disease I just started to get strongly educated about SCD. And I'm sure that it"s will help a lot on my son's life.
Take care.