Finding it hard...

[BeckScandiacus]

...to keep rolling with the punches. 7 months ago I was diagnosed. I'm twenty years old, and already it's rendered me useless as a worker. I've lost my last two jobs due to work deficiencies cause by my serious cognitive impairment. I've been unable to find work for approaching 3 months, and I receive $400/month in unemployment. Getting by has been a serious struggle. Overall though, if I were to summarize these last seven months, they've altogether been pretty joyous with my partner and good friends.

Things don't seem to be getting better though. Rather, they just keep getting worse. Medical bills keep stacking up against my meager income, pushing me further and further into debt. I recently had my first MRI since the one that confirmed my diagnosis. Lesions grew on my brain and c-spine, with new ones even forming. My sensitivity to Rebif and my insurance jerking me around led to me being unmedicated for about two months, but the new lesion activity seems so rapid for a 6 month span of time, medicated or not.

For the first time in my life (and far too soon, I would say) I'm really at the end of my rope. I look back at how much my life has changed in these short seven months, and it just hurts. I can hardly even enjoy the memories of better times, because the disease has taken many of those, too. It just doesn't seem like it's going to end.

I apologize for coming just to vent negativity everywhere, but simply putting these griefs into words is really therapeutic, in a way. I'm sure plenty of others out there have found themselves in desperate times... How did you pull through it all? When did it stop being so damn hard? When did you finally get cut a break?

[Thinkimjob]

Hello. MS probably won't cut you a break, but you can cut yourself one.

It's okay to be angry, disappointed, sad etc and to let people know, particularly here. There's no rule that says you have to be positive all the time. That's kind of exhausting.

I find it a relief to read posts where other people are feeling the same.

You wrote that the last 7 months had been pretty good, even with the diagnosis and the lost jobs and the lack of money. That's amazingly positive, all things considered.

The sense of grief and loss does pass, a bit, eventually, sort of.

[dpmich]

Hi Beck,
1st of all, glad to have you here venting, that's good for you. It's also good for us to know that other people feel the same darn way that we do. As for "When did it stop being so damn hard? When did you finally get cut a break?" That is not an answer that I can give you, none of us can. Some times you do get a reprieve from the MS and you can go for many years w/o problems. (I live for those btw!)
To help you now though, you can't survive on 400 a month, certainly not when you know it'll stop sooner or later. Try going to your state Aid agency, apply for financial & medical aid, whatever they have to offer you. It's probably early days to apply for disability through Social Security though there is no reason not to try. I say that because of your age, it won't be as easy for you to get disabilty assitance as it would be for someone like me that is in the 50+ range. You will probably need to have an attorney to help you with this process, there are many that do just that.

Best of luck to you Beck, I hope & pray you get that "break" soon!
Debbie

[Jules A]

No wise words for you just know we understand.

[Windwalker]

Posts like these break my heart. It seems the MonSter is into claiming victims younger and younger. I could never relate to having to deal with this at such a young age.

No need to apologize, most of us turned to MSWorld because we were at the end of our rope, feeling scared and desperate...needing, wanting answers and support.

I am Primary Progressive, so I have a fast progression also.
I think it's start's getting easier when we find acceptance. This is not an easy process...still trying to get there after almost 5 years...but I'm getting closer.

No one knows how one's disease course will go but in most cases you do stabilize and "get a break". If your MS is as serious as it seems to be, especially at your age, time to start thinking about yourself, putting yourself first. It does'nt mean you can't love and care about and for others.

Dealing with financial stress is not good for your illness...you must find peace. Big Corporations have no problem declaring bankruptcy, I.e. Recent news about MF Global and $1.2 Billion in missing money. The head of the company answered; "It's not my fault" and "I don't know"
when asked what happened to the money. He was a former Governor and Senator. So why should you give a ****?

Rack up the medical bills with absolutely no care in the world about it. Pay what you can, $5 month if that's all you can. Put your care first! When you have all the tests, etc. you need, declare a Chapter 7 bankruptcy. It will be a slam dunk for you. Exercise and eat right.
This is my advice to you. Good luck and may God be with you.

[BeckScandiacus]

I appreciate the empathy and support. When I say that the last seven months have been generally joyous times, I mean it, in spite of all that's happening. I've relocated to a new home in a new town with a couple mutual friends and my partner who's been there from the beginning. As far as my physical health goes, it's been better than ever (short of the growing plaques) now that I live in an agricultural region. Local organic everything via a great grocery co-op. Nutrition and physical fitness have actually been a passion of mine for the last few years.

I'm pleased to report that through all this, I'm still in good enough shape to do some of the things I love, like mountain biking and snowboarding. Daily exercise and proper nutrition are things I've practiced almost religiously for the last 4 years of my life.

Through this whole thing I've still had good friends, and that's the most important thing. Add to that that I've been fortunate enough to have food and shelter, I seems like I don't have that much to complain about.
That's what keeps me going. Knowing that I still have all the things that really matter, no matter what this disease (or the agroscience/insurance/pharmaceutical complex) has to say about it.

[VickiD]

Hello. MS probably won't cut you a break, but you can cut yourself one.

It's okay to be angry, disappointed, sad etc and to let people know, particularly here. There's no rule that says you have to be positive all the time. That's kind of exhausting.

I find it a relief to read posts where other people are feeling the same.

You wrote that the last 7 months had been pretty good, even with the diagnosis and the lost jobs and the lack of money. That's amazingly positive, all things considered.

The sense of grief and loss does pass, a bit, eventually, sort of.

Love this post...you are so right. MS doesn't cut us a break, but we can cut ourselves one by trying to go with the punches and allowing ourselves to grieve, rest, etc. Thank you for the reminder.

So sorry you're struggling, Beck. You're definitely not alone in this. MS definitely brings with it a lot of losses. Eventually you'll notice beauty that comes from it, too, but at times it's hard to imagine that good will ever come out of it.

Thank you for being real and sharing your feelings with us. We are here for you.

~ Vicki

[Lexie]

Hey we all have felt those feelings at one time or another. Come to these boards and vent any time. We need to hear that other people have the same problems as we do and understand what you are going thru. May God bless you and help you find a way to survive this economic pinch that is affecting us all!

[barbie]

As someone else said, check out the options of disability. I believe there is a supplemental disability so you can still work and receive supplemental income.

When filling out disability, medicare, whatever forms be sure to answer each question with as much detail as possible since these people don't sit down with you and this is their only chance to understand your difficulties.

An example is when one question asks what you do daily, instead of just saying watch tv, think deeply about the question and what you actually do when you watch tv. Do you remember the programs you watched or did the hours just fly by and suddenly it was dinner time?

My uncle's profession was helping people fill out disability forms and he recently gave my brother, who has crohn's, advice about filling the forms out. For the questions you have to really dive into your past symptoms and describe them with great detail.

Anyway, best of luck and I hope you feel better.