Sikcell: People living with Sickle Cell
We still Hope
plz help me be a warrior for my warrior!!!!
Hello my name is Danyelle or Dannie for short. I've been dating this guy for a while.... well we dated about a year or two ago and we recently rekindled our flame.we are both 23. He has sickle cell disease and I have the trait. We never really talked about having kids together but I know that I want kids and I know that he wants them too but we never discussed about having kids together. I know the chances of our children having ss are 50/50 so I'm not sure where I stand on that. I've done alot of research and I've learned a lot since I've been with him. I really do love him and I'm prepared to go thru hell and high water to be there for him but at the Same time its personally conflicting to me. He is definitely the suffer in silence type. The first time he went into crisis while we were in bed and I was asleep. I woke to him in pain on the floor. I didn't know what to do and I panicked. So now he just suffers in silence and tries to hide it. its conflicting to me because I don't like the helpless feeling I get when he goes into crisis micro or macro. Like I literally feel like there is nothing that I can do to help. For me that is then worst feeling ever because he'll just cling to me on silence and all I can do is tell him that everything is going to be OK. I guess my question here is how can I help... like really help? I try to take his mind off of it but that hardly ever works. How so I help him in alleviating some of the pain. I try to ask him when its happening but he never tells me he just suffers thru it. A true warrior. Ive also tried asking him when he's not in crisis and he just tells me that I don't have to worry about him so much and changes the subject. He really is a warrior and my hero but I want to be his warrior I don't want to sit on the sidelines and watch. Plz help me
Sincerely,
Dannie
Replies to This Discussion
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Permalink Reply by ash on
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the first thing id like to say to start on a good note is that you are already helping by being supportive. with sickle cell its important that you know that people are there for you and it helps to know that you arnt just suffering alone with no one who cares. dont stop showing him that you care while hes in crisis as well as when hes not. im also the type that would rather suffer in silence, i think partly this can be because i know that the sad truth is that my pain is something that cant be cured (at least in my case) and also because i dont see the need to burden someone, especially that i care about with my pain when the most they can do is suffer along with me (mentally). its a hard spot to be in as a supporter of someone with sickle cell. from my experiences the only thing that has helped me be in less pain (i know it sounds worn out) is eating right, exercising within my limits, and trying my hardest to not dwell on being sick when im not hurting and being in a good mental state. along with this i do take folic acid and pain medicine and visit my hemotologist for checkups. different people have differing opinions on the pain medicine part as far as natural treatments vs clinical treatments and such but at this point in my life ive had to come to terms with the fact that if i want to have any quality of life i have to take medicine at least for now :/ not everyone needs to be on pain medicine 24/7 sometimes its an as needed thing to keep the cost down compared to going to the hospital. depending on his hemoglobin he might be a candidate for hydroxyurea, but im not a doctor so i dont know the specific cutoff for it. in the end as for helping the physical pain that he is experiencing the only solutions that have worked for me are above. i really wish i had more......idk helpful/magic advice but the most you can do is support him unless he wants to do any of the things i listed. also dont beat yourself up about his pain, stay strong for his sake as well as yours.
-ash
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Permalink Reply by Jennifer Wilhoite on
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1. Use home oxygen. Ask your doc to supply this.
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Thank you guys for replying... it really helps knowin that I'm doing something right. I try my hardest to do and be everything that he needs. But yea as I said he usually doesn't tell me much like he's embarrassed by his pain. He's such a strong person and prideful too lol. He hates to admit his pain but I can always tell. So thank you for your help and if anyone has anymore advice or anything else to say then plz don't be afraid to comment. I won't bite. Even if it's something I don't want to hear
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Hello Dannie, you are an awesome girlfriend! To go out of your way to help your man in pain is awesome. The best thing you can do is not to stress about it, you are already helping him in more ways than you think even though you might feel helpless, its natural for us to feel so. My sister has it too and even though i know exactly what she is going thru since i have, i still feel helpless at time. Just be there for him, which you are already doing. Also check out a similar question here to see some other advice people have: http://sikcell.com/forum/topics/best-friend-to-one-of-the-best-huma.... Pam, one of our awesome members also made a video on this topic, check it out here as well: https://www.youtube.com/watch?v=HdkVIw1wnss