Sikcell: People living with Sickle Cell
We still Hope
It's a wonderful thing to have this site!
My name is Dan and I have Sickle cell SC. I am 34. I'm praying for everyone on here and I'm glad to have someone to talk about this with. We all are so blessed to be alive and able to communicate our problems.
I was diagnosied with this disease in 1996 when I was in the Navy. When I was younger, I went to the hospital once
or twice a year for extreme pain in my legs. The doctors told my mother I was having muscle spasms.
Everytime I would over use my muscles they would cramp up and start to hurt for hours. Sometimes I would tell my parents and other times I would deal with it. When I was in high school it got worst because I was in sports. I would take a lot of OTC meds and not tell anyone, unless it was to great. Then I would go to the hospital for the same diagnosis. But, they would give me a decent amount of pain meds. lol
In 1992 I had to get glasses because my sight was becoming blurred. I could not see far away clearly. I started to see
more floaters than usual in my eyes. My doctor told me this was normal. In 1997 I started having more crisis and I could not keep a job for more than three months. I thought I would never be able to work. I got very depressed and started to not care anymore. I was in the hospital 10 times that year. I finally gave my life to God and I realized that most of my problem was STRESS. And not knowing when enough is enough.. I learned that I could minimize my crisis by controlling my stress level and not over using my muscles. I have always been athletic and that is why I did not have as many crisis. When I let myself go and stopped caring, that is when things got worse.
In 2002 I really started to learn what my disease was all about. My left eye started to bleed on the inside. I was taken to see an eye surgeon who told me I had a blood clot in my eye and when the vein that had the clot grows back it is open. That is where the blood came from. I was told to have it lasered to stop the bleeding. If there is anyone here that has this problem, do not get it lasered. It stops the bleed but it also destroys that part of your retina. It will never heal. You will always have lost vision in that part of your eye.
I was told years later that I made that mistake by a different doctor. My eyes will keep having clots and bleeds until I can no longer see. I have 20% lost in my left eye and my right eye started last year. Sometimes I can't see clear enough to read, drive, or watch TV. Unless I have a lot of light. My computer is on 75% enlarged so I can read clearly. I lost my job in May 2009 because of attendence and I'm have problems finding one that can accomadate me. It is very hard on me and my wife.
God will provide!
Sorry, if this is to much! lol! I just wanted to share some of my story.
I was diagnosied with this disease in 1996 when I was in the Navy. When I was younger, I went to the hospital once
or twice a year for extreme pain in my legs. The doctors told my mother I was having muscle spasms.
Everytime I would over use my muscles they would cramp up and start to hurt for hours. Sometimes I would tell my parents and other times I would deal with it. When I was in high school it got worst because I was in sports. I would take a lot of OTC meds and not tell anyone, unless it was to great. Then I would go to the hospital for the same diagnosis. But, they would give me a decent amount of pain meds. lol
In 1992 I had to get glasses because my sight was becoming blurred. I could not see far away clearly. I started to see
more floaters than usual in my eyes. My doctor told me this was normal. In 1997 I started having more crisis and I could not keep a job for more than three months. I thought I would never be able to work. I got very depressed and started to not care anymore. I was in the hospital 10 times that year. I finally gave my life to God and I realized that most of my problem was STRESS. And not knowing when enough is enough.. I learned that I could minimize my crisis by controlling my stress level and not over using my muscles. I have always been athletic and that is why I did not have as many crisis. When I let myself go and stopped caring, that is when things got worse.
In 2002 I really started to learn what my disease was all about. My left eye started to bleed on the inside. I was taken to see an eye surgeon who told me I had a blood clot in my eye and when the vein that had the clot grows back it is open. That is where the blood came from. I was told to have it lasered to stop the bleeding. If there is anyone here that has this problem, do not get it lasered. It stops the bleed but it also destroys that part of your retina. It will never heal. You will always have lost vision in that part of your eye.
I was told years later that I made that mistake by a different doctor. My eyes will keep having clots and bleeds until I can no longer see. I have 20% lost in my left eye and my right eye started last year. Sometimes I can't see clear enough to read, drive, or watch TV. Unless I have a lot of light. My computer is on 75% enlarged so I can read clearly. I lost my job in May 2009 because of attendence and I'm have problems finding one that can accomadate me. It is very hard on me and my wife.
God will provide!
Sorry, if this is to much! lol! I just wanted to share some of my story.
Comment
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Comment by Dan Elliott on July 10, 2009 at 6:20pm
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Thanks, for the replys! Ali, I have been denied twice for disability because the doctors did not say in there reports that I was disabled or that my eyes are that bad. I am trying to apply again and I am waiting for a doctors appt. I wish you well with your appointment.
Sickle Cell Warrior, I have heard of Nicosan. I don't have a doctor right now and I don't know how to get it without one. You have any suggestions? Also, I was living in Florida at the time I was going to the hospital when I was young. They did not care enough to even do a blood test on me. They just told my mom to have me put ice on the area and stay off of it for awhile. We didn't have insurance or a regular doctor.
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Comment by Sickle Cell Warrior on July 10, 2009 at 1:15am
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Hey Dan
Welcome to the board...thank you for sharing your story...I really didn't know how dangerous getting your eyes lasered could be. I can't believe it took so long to get diagnosed...where do you live? I'm shocked that none of your docs looked at your labs and figured you had SCA. That's sad. The main thing is to not give up hope. I think you should apply for disability like Ali suggests...if not for the SCA, but just for the eye problems alone! I hope you find some resolution soon.
Have you heard of Nicosan? what do you think?
Edwin, I emailed you.,
Ali, that is such great advice...I wish you well with your appointment.
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Comment by edwin perea on July 9, 2009 at 9:02am
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Dear Friedns
My father in Colombia is needing NICOSAN for treatment for your Skell Cell S.C. please help us to buy the product
God bless you
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Comment by Ali on July 2, 2009 at 8:26pm
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Welcome to the site Dan. Thanks for sharing. I see a retina specialist twice a year. He has been watching some blood vessels for years. Thanks for the advice about lasering. I no longer work effective May 29, 2008. Have you considered applying for disablity? It was a difficult decision. Now I have an appointment with The Dept. of Labor Div. of Vocational Rehabilitation Services. I will see what it is about, but what I know now is they help find a job that will accomodate our absences. I wish you well with you next move. I am sorry that the doctors took so long to diagnose you. I have never heard of that. Perhaps it is better because you have been athletic your whole life. Unlike me, who was always advised to avoid sports and exertion.
Best Regards,
Ali
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