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If you have questions about this change, you're in the right place. Our editors, experts, and community of change optimists have answers!

thedubrat

Question:Is there a group out there or even just one person who can understand the incredible pain I am in? I am losing my smile, something I never do. I'm afraid, so afraid now.

I am a disabled mom.I have Rheumatoid Arthritis, Osteoarthritis,Fibromyalgia,& many side effects conditions. I have 9 grandkids.Two of those belong to my stepson and I don't get to see them often.We lost one,Devan,to SIDS at 7 weeks old in 2005.He was my oldest son's youngest son.I don't think we will recover, but we are trying.I have 5 sisters(1 foster),3 brothers(1 foster)and my momma.Plus many, many nieces, nephews, great nieces, great nephews, and so on. We lost my daddy in 1996.It has left a huge hollow place in my heart.As you can see, my life is all about family, always will be.Since I became disabled, most of my friends have gone on with their lives and this computer has become my outlet to meet people and make friends.I have found many here. I hope to continue to do so.
It has been a struggle, but I have managed to keep it together until now. I have fought & refought the govnt for help & benefits. Seems you need to be married, over 65, or been pronouced by a doc that you are going to die within a year. Right now I am waiting for my Medicare to go into effect on October 1st. Lost my Medicaid on August 31st. Been without my most crucial pain meds for 3 weeks, got 5 days to go & then there is no telling how long it will take to get my body back in rhthym. Right now the pain is so immense, a black curtain dropping down, can't breathe, will I make it to October 1st without crashing & burning for a while at least? I don't think so right now. I am on my 2 day of no sleep, just patchs of 30 min or so every now & then. Just wondering if someone out there knows what this is like and can give me hope again. Please.

Asked by thedubrat on 9/27/08 3 Answers»
thedubrat

Answer:

Thank you both. Your emails were helpful and gave me hope in some of my darkest hours or what I hope are going to be so. I have survived so far, dealing with Medicare is a nightmare. So many family issues still, so much pain still. I slammed into the "Donut Hole" on Oct 3rd and again Jan 8th. UNBELIVABLE! A person is made to choose between food & meds. I have some brand names I still do not have. The paperwork and requirements from the supposedly "Co Pay Assistant Programs" is insane. I got my first brand name approved yesterday, April 28th, Began working on these in Oct 2008 now. My system and pain is flaring and flaring and flaring. I will, and this is a promise I have made to myself, I will, when I get everything settled and can live on what I receive and still have food and all meds, I WILL start working on these laws, Medicare, ERISA, Medicaid, Food Stamps, All of these and many more need to be addressed, corrected, updated. It is a shame and disgrace that we live in a country that allows this degradation of it's own citizens to go on. It is crazy that we have to make such desperate choices. And Please God, don't let me lose it with the next person who tells me that such-and-such program does not apply to me because I am not retirement age yet. So Sorry, when the laws were made, the disabled were not taken into consideration. Those are screaming words. I have cried & cried & cried over them. I am ashamed of our Congress and Senate.

Answered by: thedubrat on 4/29/09
aliciak

Answer:

Wow, I wish I had seen this sooner. How are you doing?

Well, I wasn't hit with alll of that when I originally got sick, but I was only 23 at the time when I got diagnosed with a chronic disease. It has taken me years to get to a better place, and I must say, my family and loved ones definitely contributed to getting me through the hardest times, which often went on for months. There were more than a few times when I was very close to giving up.

I did the no-sleep thing and 24/7 intense pain thing. There's nothing that can really "help", but I try to remember the quote from The Count of Monte Cristo, "wait and hope."

Even when it seems completely illogical to believe that you'll ever get better, you have to believe it will work out, or at the very least, that the bad will subside enough. I'll never be "better," and I know my future will hold more of those bad times, but you must cling to what gives you that hope to keep going (family! friends! sites like this one!). Wait and hope.

Answered by: aliciak on 10/14/08
kristen

Answer:

Breathe. You can do this. You are doing this. You've survived, you've made it a long way. You are stronger than you think.

I've never faced a situation like yours but I know there is hope. I don't know if you're a praying person, but it helps me in the midst of very dark times. Many people I know also use meditation/deep breathing when pain and struggle feel like too much.

There are hospitals that will (and must) treat you without insurance. Are there clinics in your area that help those who don't have resources?

Answered by: kristen on 9/27/08
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