[Steve M]

If you don’t fight you wouldn’t be here now every time you get a crisis you fight it.. how? Well you start drinking more fluids taking pain killers, using heating blankets, resting more etc… if you don’t fight you won’t make it you won’t survive try not to do all this and see what happens or try not to take care of yourself on daily basis.
You fight since you wake up to stay hydrated to not do anything that will harm your health if you don’t fight you won’t survive is that simple.

[Steve M]

To be honest I do not know anyone that has SCD other than my uncle I found this group a couple of moths ago and I like reading what everyone here feels or has suffer but I wish I could know personally some other people with sickle cell idk to talk and share experiences and maybe help each other when needed because nobody knows how we feel on daily basis, during and after passing  a crisis. Our family tries to understand and help as much as they can but to me only someone suffering the same desease can understand us…

[Steve M]

In my case yes I’m ok with warrior because yes we fight a huge fight every day because is not like we only worry when we are in pain we have to take care of our health everyday single day…  we go through crisis, infections, organ damages, surgeries, blood transfusions   We miss family meetings important occasions etc… I think we all know that one day SCD is going to win our battle but till then YES we are WARRIORS.

[Steve M]

Oh this is a good one.
I use to be fine before I use to eat well 3 or more times a day but now I can eat one meal (lunch) and call it a day

morning= coffee

lunch= meal

dinner= coffee

terrible my fam gets concern why I’m not eating if I’m not in pain or anything but I’m just not hungry and there is one more thing that affects my food intake it is the fluids (water) I believe since I’m always drinking water to stay hydrated I’m always full and I do not get hungry.

sometimes what I try to do is eat less at lunch so I can be hungry for dinner and I eat a lol but then but that it.

Not mention when I’m with a really bad episode and I’m in the hospital I do not eat at all I’ve been up to 6 days without eating absolutely nothing at all. A sign that I star getting better from the crisis is when I start eating that’s when start feeling pain relief little by little.

 

[Steve M]

I just try to wear warm cloth and bottoms be outside if not necessary

[Steve M]

Hello, I have never used oxygen other than when in the hospital with a crisis but yes I have been adivise to carry one if I go to some places in high levels so I refuse to do that I rather not travel to places over the sea level idk if anyone has been told to stay at the sea level and warm places

[Steve M]

Hello Everyone, this is what I do when a crisis is going to hit I start feeling extremely tired for few days also I feel pressure on my lower jaw I know I’m going to get a crisis so I start drinking more fluids and resting a day or two this helps me sometimes but only to space it out for a few days no matter what I still get it…

Now when I get pain I start the pain killers immediately and also use a heating pad which helps me to relax and control the pain sometimes then I stay in bed and wait for the crisis to stablish in the places it will hit me because in my case it travels from one place to another on the first few hours then if I can’t handle it I have to go to the Hospital. I have learn with every crisis how to know how  bad is going to be sadly but we learn to understand this bs.

[Steve M]

Hi Tito I have an appointment on October 19th hopefully won’t be nothing serious I’m scared of what can it be but I’m a warrior and a survivor so whatever it is I’ll fight it.

I’ll let you guys know what the Doctor says

[Steve M]

Wow Viviane Salzman I just read your letter and I can relate all of it with my life I have had so many health issues that is crazy and yes sickle cell is a monster it’s the worst in all ways..

Thank you for sharing this letter with us. Stay safe and healthy

[Steve M]

<p style=”text-align: left;”>When I was growing up I use to want to be a doctor that was my dream so I started school for it but unfortunately I couldn’t do it sickle cell was to much to handle I missed clases a lot so I failed.. Then I thought about doing nursing but been in the hospital so many times I decided not to because I knew I would have problems aswell if I am was able to finish my career once I got to work been around infections and other sick patients wouldn’t be secure for me so I left that idea too.. sickle cell changes your life for sure is all I can say…</p>

[Steve M]

Hi everyone, I have done different jobs in my life But having sickle cell has been really hard cause when I get a crisis I missed work and had problems sometimes got fired or I just quit but now I am a barber I decided to get into this field because I can make my on schedule and I can keep up with it easier it has work for me a lot, 5 years so far as a barber. I keep fighting everyday trying to stay as healthy as I can be…

[Steve M]

Thank you Kisha T. I’ll look in to it.

[Steve M]

Let’s see we’ll since sickle cell talks I have learn how to listen and understand my body I used to feel tired but I kept going pushing myself basically I didn’t want to listen what my body was saying and always ending in a crisis or hospitalization so now I do listen and when I feel that way I take it easy, stay home, rest, drink lots of fluids and try to breathe good, this few thing make a change sometimes I don’t get any episodes sometimes I do but at least I

[Steve M]

Yes of course it is United Health Care  (HCA) never had any problems with this insurance

Please do if you or anybody has one of find one let us know… thank you..

[Steve M]

All I can say is that Sickle Cell made me a really strong guy I fight with this thing everyday sometimes I win sometimes I don’t but I never give up and I will never do it. Some days are better than others and worst too but we have to keep going we got this…

[Steve M]

Hi Tito, it’s hard to give up on things we like but it’s for the best

I had to stop riding my bike since I was a 10 years old because every single time I got on it the next day I Started feeling bad or already in a crisis. I never could play Soccer or run simple things you do as a kid or teenage.

[Steve M]

Hi Rodney, well mine is not to good because idk why but I have being losing my appetite a year ago I eat only 2 times daily and sometimes only 1 my stomach gets full easy and it takes time for me to get hungry again.

[Steve M]

Hello Tito and Rodney I just want to say that this is so correct it took me a lil bit to figure it out cause I don’t get upset or angry to easy but when I do it’s bad I feel terrible and can’t control it and I end up getting a really bad crisis to the point that I get hospitalized for days….

Also I got sick after getting to excited about something one time but I think that’s the only time it happens cause of excitement I think.

One more thing fatigue…. around 6 years ago  mine changed and it’s just getting worst I always feel tired, I wasn’t like this I used to have so much energy but not anymore I don’t know how to help it and its becoming a problem cause I never want to do anything

I’m sorry I can write forever

[Steve M]

Hello Michael I have health insurance thank God but haven’t been able to get life insurance, been denied 3 times so far unfortunately but I keep looking if you or anybody knows where to go let us know please..

[Steve M]

Hello, Tito I have SS, let’s share some knowledge everyone..

[Steve M]

Hey Karen Welcome to the fam.

kind of new here too couple weeks ago, anyway I was reading about you starting the Adakveo treatment… I am starting it next week and I’m excited aswell, so can you tell us how do you feel or if you feel anything? I know is too soon but whatever you can tells us would be good.

I was on Hydrea but it is not working for me it used too but not anymore so I’ve been waiting for Adakveo since las year 🙂