The Sickle Cell Disease Forum

[D's Mom]

Hello everyone,
I read everyone's post so that I can gain knowledge through others. My son is the only one in the family with sickle cell disease so sometimes its hard to talk with them due to they do not always truely understand. My son has been doing well since being on hydroxurea. I don't know if its because of that or it was just meant to be but I'm glad. He is having trouble with his asthma but I think its under control now. Sometimes I do feel sad because there are no younger children for him to play with in the family and he is unable to go to daycare per the Dr due to that he has been sick most of his three year old life. He just started a few sports classes that he seems to enjoy but it is hard to make friends there because people come and go. I hope that he will be able to start school at age five so that he can make many friends.

I lost my job at the beginning of the year without any notice. I had been there for three years and one day I came to work and out of no where I was asked to leave. The funny thing is I hated going there but my family needed my income. I missed many days taking care of my son but what else could I do, I'm his mother. I had never been fired before and it kinda hurt that even though I may be at the hospital with my child I still made sure that my work was done. The company stated that family came first however it did not apply to mine. I have been on unemployment to help out but it will soon end. I have not found another job and it appears there is nothing in my field. I obtained my realtors liscense so that maybe I can have a flexible job but no contracts as of yet. Although we have health insurance we have numerous medical bills and between medications and dr's visits it seems like I can never get a head. My credit cards are full because when I run out of money bills still need to be paid. My husband works two jobs and we hardly see him as it is. Does anyone else have these issues or is it just me?

I have tired to get SSI but our income is to high. I search the intenet for programs but it does not seem to be out there for help. I do have a caseworker through Sickle Cell Foundation here and she is wonderful however there are not that many things she can help me with because there is no support out there for SCD and their families. I went to the support group in my area but no one was there but me and my son. It was explained to me that most people only show up when they need something and not just for support. Sometimes I just feel alone with this but when I read some of the posts mine seem very minor.

Thanks for listening.

D's Mom

[Mamoo]

Hi D's Mom,

It seems as though it's not enough to have a sick child but then you have unpaid bills, loss of your job....a never ending struggle just trying to "keep on". The company you worked for should have their "rear ends" kicked for firing you...it was almost like a "double standard"...it applied to them of family first but not you.

I had a friend send me the following link and I want to share it with you & anyone that reads this. It's called Angel Food Ministries...it's a non-profit group that sells bundles of food really cheap...you don't have to qualify and usually there's no limits...here in Missouri they even accept the Food Stamp card.

Here's the link for Florida cities and the following one is for others that live in other states so they can find their distribution centers....

(1) http://www.angelfoodministries.com/hosts.asp?name=&city=&state=FL&zip=&miles=20&B1=Search&search=search

(2)http://www.angelfoodministries.com:80/

I know this isn't the answers to all your problems but it may help ease the grocery bill and allow you to have some extra to pay for meds or dr visits. It sounds as though your son is doing much better than he was since he started the hydroxy...it may be that a flexible part time job or your realtors job will be just what you need to get back to work. Do you work as an independent or with a company?...just curious not nosey !

Never apologize for venting....sometimes that's the only way to survive the "down" times. Also remember HE^ never puts on us more than we can bear....so keep your chin/head up and if you need a shoulder just pop right back on here and we'll be here.

Love,
Mamoo

[D's Mom]

Thanks Mamoo.

The information about the foodbank was very helpful and will save some money. I'm currently working with Exit Reality but have applied to the school system to be a sub teacher. Hopefully I will know by the end of the month if I am accepted.