Here we go again

[lstrl]

I swear, I can never catch a break and I'm sick of it. My family has been helping me financially and then I was forced into working full time for my dad. It's not enough and I'm going to run out of money to pay my house payment within 6 months. It's so stressful and I have no idea what I can do.

Ever since I started working (actually way before), my fatigue has been out of this world. All I think about is sleeping, but I somehow force myself to stay awake ( no idea how though). Things are getting so bad, I'm constantly forgetting everything. I can't even remember something long enough to write it down when a pen is already in my hand. This is with everything though, not just at work. I also can't walk very far and my legs randomly give out every day. It's amazing my last fall was over a year ago.

My family promised to help me and said I wouldn't lose my house. My IRA is paying the house payment and I pay everything else, with the exception of my medical bills. Now I'm being told I need to get a real job (I guess the one I'm doing is fake). They want me to go back into nursing, which would be fine if I could, but with my condition, I don't see how that would be possible. They also give me crap about not even looking. They're right. I don't look. I don't have the energy to look by the time I get home. Sometimes I don't even know how I make it home in one piece!

I've tried to tell them that my mind isn't what it used to be since I seem to forget everything, but it seems to go in one ear and right out the other. If I even mention how terrible I feel without being able to nap, they will just say cry me a river. Gee, thanks for the support. Trying to get them to understand is impossible and I give up. They just think I'm being a lazy bum and mooching off of them everything I can. I wish! I also have to hear about how my mom is such a gimp with her arthritic knee, even though my movement thanks to ms makes her arthritis look like a joke!

I wish I could separate myself from them, but I can't. As my resources are dwindling down to nothing, I don't know what I can do. For having a supposed support system, I feel like none exists. I don't even know what kind of options I would have to make it in this world. All I do know is I'm sick of everyone asking for donations all the time when I don't even have a dime to my name. Thanks, ms. I'm so glad you've come to destroy my life.

[Jules A]

I'm so sorry this is happening to you. I hate this miserable disease.

[AriD]

So so sorry for what is going on for you Symptoms wise and lack of support. Do you have a case manager or social worker you could talk to for resources? They might be able to get your family in tune with your condition.

Nursing is tough with the physical symptoms of MS. Cognitive concerns would make it very difficult to be safe. Could you go on disability? Long term through your dad or ssdi? Try contacting your local MS Society. They might have resources for you. Take care

[dyin_myelin]

Do you have extra bedrooms you can rent out? If you establish a fair value for your area you can have the renter offset the rent with errands and housecleaning. You can mitigate risk by doing a background/credit check and charging first/last/and security.

[lstrl]

I filed for long term disability and was denied. I have no benefits working for my dad, so that's not an option for me right now either. I also applied for SSDI probably a year ago and was denied and the appeal denied as well and I'm still waiting on a hearing date, which I'm convinced I'll be dead before I ever get one. They don't get in a hurry for anything except for a denial.

If I could somehow end up getting approved for SSDI (which I quit holding my breath a long time ago), things would be a lot easier for me. Until then, I'm stuck toughing it out until my body won't even let me do that anymore, and it just barely keeps me going right now.

I've actually thought about finding a roommate to help save on bills, but I haven't made that move just yet out of fear of what they'd do to my house (I'm so paranoid). It would make things a lot easier, so I may have to get serious about it soon.

[fishead]

WAIT! You ARE diagnosed with M.S. and your family STILL gives you all this krap & does not support you? That is not only cruel it is not being very much of a "family" (in the sense that a person should be able to rely on family at their worst times).

I am sorry you are dealing with this. Does your family have ANY idea what M.S. really is? My family, as supportive as they try to be, never understood my disease until I started giving them unbiased information on M.S. Now they seem to understand my problems better. I suggest you too, fill your family with MS info. Perhaps "little by little", so they can digest the information.

Sending you comfort and ENERGY (as much as is possible).

[Seasha]

Hi lstrl~

I too am sorry you are not getting the support you need from your family Not only does MS affect us, it affects our families as well! I agree with fishead that our families need as much education as we do to navigate through the the problems we face. I know my husband didn't even have a clue until I made him start going to my neuro appts with me. I also armed myself with printed materials to read.

Here is a link to the NMSS for educational booklets you can get - either via email or postal mail. Maybe if your family had something to read up, the slowly they'd come around.

Maybe the lack of understanding on their part is not accepting that something is wrong with their daughter. It could simply be denial!

http://www.nationalmssociety.org/Res...ledge-is-Power

I hope you follow through with ordering these booklets. There are many to choose from. In the meantime, hang in there and think about getting a roommate (a great idea). You have every right to interview prospective roommates, so go slow and be thorough when doing this... OK?

We miss you in our exercise group, but can understand what you're going through. Here's tp better days ahead. Be well and take care

[mjan]

First of all I am truly sorry for ALL you are enduring. I am sorry your family just doesn't "get it." They do need to be educated. Unless you are in a wheelchair or have some obvious signs many do not understand this disease.

Now since you are still working and have been since diagnosis, AND you are under age 50, SSDI does not easily approve..

I wonder if you have had any Neuro psych testing? I did x 2. I did get LTD & amazingly SSDI in 4 months by ALLSUP. They are known to get an answer in 4 months. You are assigned your own case manager too. BUT I had stopped working completely because they thought I was having seizures AND trouble walking/cog issues from MS. Also I was 61 at the time of approval.

Keep a log and have family help you keep track of what they observe..that way they could participate.

Again, do not assume others understand or know what MS is all about. After all you are still walking right? THAT is the only thing people believe.

Glad you came to us because WE understand. I eventually lost my LTD and appealed via atty for 2 years AFTER approval for SSDI/LTD!!

I have an extra bedroom, tho I rent, and even asked the local MS society if anyone needed to stay with me. I need the rental income as eventually I will be homeless. I will worry about that when it happens, but preparing for it anyway.

So, I understand this pressure. Since I quite working, I have improved, but not cognitively. I was making charting errors, blanking out, and making major errors.

I am here for you.. hugs,

Jan

[AriD]

ALLSUP worked with me too during my last long relapse but only because I was on LTD. the LTD insurance company had them trying to get my SSDI because it would save them money. They could pay me less if SSDI took over. I don't know if you can use them independently.

I can't believe how families can be. You need support from them not more work and stress. Can your doctor be of help? Maybe a family member could come to an appointment with you.

As far as roommate maybe a family member or friend knows someone looking for a place. At least it wouldn't be a total stranger. Although sometimes the people you haven't yet met are better than the people we know.

Hope things get better for you health wise and support wise.

[KatieAgain]

As an HR person, I could not help but notice the Nursing Part of your post. Are you an RN, BSN, MSN????

The reason I ask is because your family actually might be on the right track. Working a 12-hour shift 4 days a week on a ward would be incredibly hard for anyone with MS. But there are some jobs out there that are wonderful for nurses with MS.

For example, do you have a Community "Ask a Nurse" Program. A lot of those Nurses are in Telecommute Positions and are answering sick patients questions and doing referrals from the privacy of their own home. Same with Poison Control Hotlines.

The MS drug companies. All have Nurse Hotlines. Are they all local or telecommute? How cool would it be for an MSer to be able to call and talk to a Nurse with MS?

I have been on three injectables. Two of the Three Nurses that visited my house to teach me how to properly use the injectables had MS. They loved their job...they loved their patients. From what I understand, these jobs are in high demand and there is a wait list...but heck, get on the list.

Break into Home Care. Some of the companies can be quite flexible. I also have a friend who went into Hospice...she really liked it.

Just some thoughts on how you might be able to take your skills and turn them into money vs. working for the Family.

Most of us can relate on Family not understanding.

As far as your home goes. Have you looked into a loan modification to lower the monthly loan payment? This Country paid out a lot of money to bail out Banks and Mortgage Companies. Talk to your Mortgage Company...maKe them listen. In all honesty, they don't want your home and they will most likely work with you to get that payment where it will be more affordable.

Good Luck.