ANYways, Rebif is Here and I Got SSI

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Well, just going to be quick.

Rebif is here, had a nice break from the needles but time to start poking again… I just hope I don’t get the flu-like symptoms… Could care less about the needles, just don’t want the flu-like symptoms… Training person is supposed to call but it has been well over 2-3 days… What the heck! Oh well, I don’t know if I mentioned this but I am moving on the 22 so I don’t want to start my Rebif till after I move so I am done with all the stress plus if I DO get flu-like symptoms that will make moving so much more difficult… New house will be nice, so much bigger, it’s going to eliminate so much of my stress!

Other good news is I got SSI so that will help a lot! Even with the small amount of money I am getting it is so much more than NOTHING so a lot of options will open up now that I have some income to play with… Just going to save, save, save and get some treatment going because I just want this to be a stepping stone in my life.

Symptoms:
Well the hug is killing me right now and it came with some burning. Pain is not so bad but dizziness is kicking my butt… I can’t see strait and walking is so hard. Been trying to sit all day. Nothing else is any different but those two symptoms are pretty bad today. Lame.

17 thoughts on “ANYways, Rebif is Here and I Got SSI

  • June 8, 2012 at 11:09 pm
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    Try ampyra for the walking — just heard info. on that — you ought to be a good candidate for that.

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  • June 8, 2012 at 11:17 pm
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    Woohoo Matt! Not only are you moving, but you got approved for SSI! That is wonderful news. I'm sorry about all the symptoms but hopefully once you are moved the MS will calm down for you.

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  • June 8, 2012 at 11:35 pm
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    Yes we will see! But as far as ampyra? I still need to do more research. I think my neuro offered but I wanted to research it first…

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  • June 8, 2012 at 11:39 pm
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    Hi Matt! I have been on Ribif for 8 years now and have had no new lesions on my MRI for at least the last 4 years. đŸ™‚ I am also on Ampyra and have found it to have helped a lot with my walking. I hope your move goes smoothly. I know it's hot down there so try to stay cool!

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  • June 9, 2012 at 3:32 am
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    Nice! I am going to make an appointment after the move and bring Ampyra up because I have been looking into it a bit and I think it would help….

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  • June 9, 2012 at 11:52 pm
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    GOT ON SSI!!! GOOD FOR YOU, WILL MAKE LIFE SO MUCH LESS STRESSFULL FOR YA! YOU MAY WANT TO STILL TRY TO GET ON SSDI (MORE $$$). I CANT IMAGINE YOU WOULDNT QUALIFY. AFTER THE MOVE YOU WILL HAVE EVEN LESS STRESS TOO! NOTICE HOW IM TRYING MY BEST TO POINT OUT THE POSITIVE? MUCH OF THIS MS SHIT SEEMS TO BE ABOUT MIND SET. THATS RIGHT, IM REMINDING YOU AGAIN. YOU KNOW WHAT YOU -HAVE TO- DO. YOUR RIGHT, MOST PPL DONT KNOW YOUR PAIN, THATS YOUR / OUR HELL, BUT WE STILL HAVE TO DEAL WITH IT AS STRESSLESS AS POSSIBLE FOR UR OWN SAKE. BOTTOM LINE IS, THAT TRUMPS EVERYTHING & ANYONES OPINION. GO BACK TO THAT POSITIVE HOSPITAL EXPERIENCE YOU HAD RECENTLY FOR SELF SUPPORT. CHANNEL THIS STRESS ENERGY INTO SOMETHING HELPFUL… EXCERSIZE, RANTING TO US, RESEARCH ETC… YOU CANT AFFORD STRESS ANYMORE, PERIOD. SAYING & DOING ARE DIFFERENT THINGS, I GET THAT, BUT I HAVE FAITH IN YOU, YOU CAN DO IT BUDDY!!!! SLEEKCARTIM

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  • June 9, 2012 at 11:59 pm
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    THINK YOU MEAN TO SAY ACCUPUNCTURE? GLAD TO SEE YOUR TRYING ALTERNATE METHODS! HOMEOPATHIC STUFF IS NEXT? THE MORE I SEE FROM WESTERN MEDICINE, THE MORE I THINK IT'S NOT THE WAY TO GO

    SLEEKCARTIM

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  • June 10, 2012 at 12:04 am
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    P.S. WITH HOMEOPATHIC, Y-O-U ARE IN CHARGE & CAN TREAT YOURSELF (WITH GUIDANCE FROM PRACTITIONER) WITH MUCH LESS STRESS DEALING WITH IGNORANT, STUBBORN, CONTROLLING DOCS! THATS A BETTER FIT FOR YOU!?

    SLEEKCARTIM

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  • June 10, 2012 at 4:29 am
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    I recently got ssi and I want to save, save, save too but you cant have more than 2k in your account. Whats the best way to save? money in the matress? I have no idea. NMSS offers resources on financial planning maybe theyd have an idea?

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  • June 10, 2012 at 6:05 pm
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    lol I know pleanty of ways to get around the bank account thing, all legal lol!

    Sleekcartim – THANK YOU. IT IS ALL GOING TO HELP FOR SURE. TRYING TO KILL STRESS, 2 MORE WEEKS, JUST GOT TO SURVIVE 2 MORE WEEKS AND I WILL BE IN THE CLEAR! I WAS DENIED SO SSDI BUT I GOT THE APEAL PAPERWORK BECAUSE… COME ON WHAT THE HECK… REALLY?? AND YEAH, PERSONALLY? I AM SICK OF WESTERN MEDICATION. IT'S ALL ADDICTIVE, IT'S LIKE THEY WANT YOU TO N E E D IT…… ARG! HAHA SO I AM EXPLORING, OR WILL BE. SEEMS LIKE THE PEO[LE WHO LEAVE THIS DISEASE IN THE DUST ARE GOING EAST U KNOW??

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  • June 11, 2012 at 3:20 pm
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    SSDI ADVICE FOR MATT & OTHERS… MY UNDERSTANDING IS THAT PEOPLE WHO APPPEAL FOR SSDI HAVE A MUCH BETTER CHANCE OF WINNING, SO DONT STOP! MANY PPL JUST GIVE UP, THATS WHAT SOC SEC & THE EVIL REPUBLICANS PLANS ON TO SAVE $$! CHANNEL ANY STRESS, PAIN, ANGST INTO ENERGY FOR GETTING ON SSDI, CUZ IT IS WORTH IT! HOWEVER, SOME PPL BENEFIT MORE BY STAYING ON SSI IE INSURANCE COVERAGE ISSUES, GET TO KEEP FOOD STAMPS, MAYBE YOU HAVE WEAK SSDI LEGAL CASE ETC… THE KEY TO WINNING SSDI IS TO HAVE VERY GOOD RECORDS, KEEP YOUR OWN FILE & CARRY IT TO ALL YOUR APPOINTMENTS, ESPECIALLY ANY SOC SEC RELATED APPTS. MAKE SURE YOUR DOCS FILES MATCH YOUR OWN GOOD FILES. YOU WOULD BE SURPRISED HOW BADLY INCOMPLETE / MESSED UP DOCS FILES ARE SOMETIMES. YOU HAVE THE RIGHT TO ASK DOCS FOR ALL YOUR FILES & MANAGE IT. IF YOU CANT DEAL WITH MANAGING A FILE, GET SOMEONE CLOSE TO YOU WHO HAS A KNACK FOR THAT KINDA THING TO DO IT. IM THINKING A PROFESSIONAL ADVOCATE SERVICE WOULD BE A GOOD BUSINESS TO START! ALSO GET A FRIEND / FAM MEMBER ADVOCATE TO GO WITH YOU TO ALL APPOINTMENTS, TO BE UR MEMORY, HEALTH & SSDI STRATEGY MANAGER ETC… IMOPORTANT: ALSO YOU WILL NEED A DOC(S) WHO IS WILLING TO HELP / ADVOCATE FOR YOU IN SSDI CASE. TALK TO THEM, FIND OUT EXACTLY WHAT THEY NEED TO DO FROM YOUR LAWYER, LET THEM KNOW YOU NEED THEM TO HELP YOU WITH THIS. IT'S A TERRIBLE BS PROCESS, JUMPING THRU ENDLESS HOOPS, STRESSFULL, ENERGY ROBBING STRATEGIES & DEALING WITH ENDLESS RED TAPE AT A TIME YOUR SO DOWN. I WOULD STRONGLY SUGGEST ANY MS PPL GET A DISIBILITY LAWYER, CUZ WE ARE OFTEN NOT AT OUR BEST, MAY BE DEALING (OR WILL BE LATER) WITH DEPRESSION, COG FOG ETC… WHICH IS ANOTHER REASON WHY SO MANY MS PPL DONT GET ON SSDI. -SLEEKCARTIM

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  • June 11, 2012 at 10:02 pm
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    Hello, Matt. Congrats on the SSI. That was a huge hurdle. But, please, please be aware that moving is stressful to the extreme. Deep cleansing breath and all.
    Cheers!
    Charlotte

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  • June 12, 2012 at 5:23 am
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    I will appeal the SSDI decision soon haha… But definitely happy for any help I can get! I kept ALL my paperwork but it is so mixed up right now… Going to be a project to organize it akk…

    And moving is not so stressful to me anymore. Let me think…I have lived in 8 or 9 homes in my life lol… Used to it.

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  • July 6, 2012 at 5:56 am
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    Hi Matt, I found your stories to be very intersting. See I have MS. I've had it for for 8 yrs. as well as my brother and sister. I read that it's more common in brothers and sisters and more agggresive in males which I found that to be true cause my brother has trouble walking, and he just started using a walker. I have really bad fatigue and cannot be in the heat and alot of other symptoms the list goes on, and my sister has none and found out before me. well at least she doesn't say anything. which is a good thing but I have to thank god that my smptoms like losing vision has returned, and knumbness on the sides of my face creeping down my neck w/ some predinose has returned. did I forget to mention that I was just diagnosed w/ breast cancer.(stage 0) Thank god. surgery and hopefully w/ prayer will not return. It's so hard to go from living "normal" to living w/ this disease. I can talk on and on and on. I feel like I have so much to say but I still live in denial. Really hard to deal w/ everything. especially if certain people that your a round have no clue of how you feel. I feel overwhelmed all the time, but I have to say that I always ask god to give me strenth and patience. I find it that when I stress is when I have more flare-ups, as hard as it is we MUST!!!(stay away from stress) it is so hard to live w/ a disease that is life changing, but to hear your stories is very inspiring to me. I'm glad that my friend sent me the link :)and now we can be friends.lol I will keep in touch

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  • July 7, 2012 at 5:01 am
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    Denial ha, never got that but… I think I am getting the mourning stage now. This is the longest I have gone without blogging except when I went to the hospital for like 2 months….

    Its hard, obviously… STAY STRONG!

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  • July 9, 2012 at 1:25 am
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    Matt this is more than you can handle, I understand wanting, even needing to withdraw into denial & depression… You need local MS buddy(s) to nudge & support you… do what you need to do to get help, it's too important not to. You had a wonderful experience in the hospital during ur last stay. maybe blogging bout that will bring nice memories & new direction (im sorry if you alreay did – my MS brain wont let me access…)? Like soldiers in overwhelming battle, they automatically follow their training, which often saves them. You are just as brave, you have been trained too… 1 LIFE. sleekcartim

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