fighting for yourself

[Guest guest]

Marla, you are absolutely right. We often have to demand, do our own research, insist on our care--all stuff our medical team should be doing. It's exhausting; drains you mentally & physically. That's why we continue to recommend that we have an advocate who will accompany us to appts., etc. When you are already sick & fatigued, it's hard to muster up enough energy to file appeals, etc. But it's often what it takes to get the necessary care.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: mebramer@...Date: Mon, 4 Apr 2011 00:16:25 -0600Subject: Re: the new guy

What's the hold up with the Remicade? I would keep fighting for both, the Remicade and Disability, I don't know why you should get denied, now that Sarcoidosis is on the disability list, that's crazy. If you believe in something keep fighting. I fought for a whole year for Remicade, denied 3 times, before I finally got it. I will be starting Disability too, so we'll see how that goes, but I'm use to fighting for what I want, and I don't give up, you shouldn't either. I'll keep you in my prayers. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

Hello to all. I would also like to welcome any new members. Sorry that you had to be dealt this Sarc disease but welcome. I am Sorry I have been missing in action but my eyes have been bothering me and the atropine medication makes it hard to see. Hense the large font. I have also been going through some marital issues and then got hit with the big second denial for disability. SSD said that I am not diabled enough and I could find something else to do. If I can barely see, I am not sure what they want me to do. Everything requires sight. I guess having chronic fatigue, headaches and joint pain is not enough. I do not know what to do at this point. Should I give up and try and find work or keep pressing on with the claim. Meanwhile I need income. I am so frustarted and disgusted I have been crying all day. As if I asked to be like this at 36 years old. Anyway, I miss corresponding with everyone and cannot wait to be finished this medicine for my eyes. Hopefully my sight will get better. Still waiting for the red tape to get my remicade infusion. Does anyone suggest another drug? I do not know where to go at this point and am so frustrated. Sometimes I feel like the doctors are not listening to me. I need to get off of the prednisone (40mg) because my sugar and BP is sky high. I hope that you all are managing, maintaining and feeling okay. Thanks for listening and letting me vent.

Best Regards

La

To: Neurosarcoidosis Sent: Fri, April 1, 2011 1:45:13 AMSubject: Re: the new guy

Connie, Of course you are not the evil one, you are our angel, with the information you have to share with us is so very valuable, don't know what I would do without your information, so remember that, we love you Connie. :)Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

Don't shoot I'm an adjudicator for SSA-DDS. The eyesight is not a listing for SSD- you still have what they consider (1) good eye, but some of the other problems may be allowable such as "unable to complete a 40 hr week" (this sometimes comes in to play because of med side effects, fatigue, persistent pain) Not able to return to previous work. Inability to effectively ambulate due to two weight bearing major joints being effected. Cognitive, memory, or concentration issues for someone over 55 and older with a precision position requiring astute mental capacity. If you are 55 or older that is a plus. If you are 55, and your previous work was say medium to heavy (medium is 20 - 50 lbs occasionally) Heavy is 50 lbs plus occasionally. Of ir your position required extensive visual accuity-Accountant, phsician, nurse, phlebotomist, semi-driver, roofer, construction worker,etc. - this can be what is called a Med Voc allowance. At 55 we don't normally tell somebody they can learn something new.

If you do apply think carefully before filling out the work history. We often sell ourselves short when putting down what we think we do on a job. I have contacted people I know under estimated the weights they lifted on their job, the amount of standing/walking, length of time sitting, reaching, stair climbing, grip strength, preciseness required in their position, ability to remember details, and structured functions, work on multiple and various machinery, etc I would recognize the job, and know they had not given themselves enough credit for the job they performed. Also be brutally honest when filling out the function report. Put your limitations out there. Sometimes we don't want to admit what we can't do anymore (I personally hate it). But this is the only way the adjudicator can really see what destruction this illness is doing.

PS:No you don't have to be 55 to be approved. All ages, from babies on up

And no I am not the evil one. I am a chronically sick person's biggest advocate, I know what it feels like.

To: Neurosarcoidosis Sent: Thu, March 31, 2011 2:43:47 PMSubject: Re: the new guy

i wanted to say thanks to everyone responding to this thread, and apologize for not replying sooner. many of the things you folks brought up had gotten me to spend some time researching & making phone calls!

as i alluded to in another post, i think i got my first brain MRI squared away. i'll be doing it at the hospital (ugh). i spent quite a bit of time shopping around, but for me, in my area, there's not that many options, and traveling a long distance to get a cheaper MRI would be just about the same cost as going to the local hospital. so, i opened an account with the patient accounts department, 0% interest & they'll work with me, and the MRI i need is $2300. ugh again.

Connie, i do not at all mind you asking me about my eyesight i started getting blind spots in my left eye first, & it didn't bother my right eye for a number of years. today, my left eye is 20/200 (i can read better using averted vision rather than direct vision!) and my right eye is about 20/50. i still have a valid driver's license, but only because this past November i was able to renew it thru the mail, rather than going in to the DMV for the usual eye test. it's always been a source of confusion for me - does one wait until he's 100% sure that he shouldn't be driving anymore, before he hangs up his keys? or does one do that before it's necessary, better safe than sorry, even though he can still drive? i still struggle with it. maybe i'll sell my Jeep to pay for my MRI!

i have also taken the advice given here & have an upcoming appointment to talk to DHS. also, a very knowledgeable person posted SSD info here (sorry i'm blanking on your name!) for which i'm thankful & i'll have to re-read that one to see if there's something i should be doing.

okay, i'm writing this at work & really should get back to it. thanks again to everyone for the advice.

chris

, that's an excellent idea. Many times we don't even consider possible alternatives, or even know there are anyway. One of the great things about this group.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 21 Mar 2011 08:32:48 -0700

Subject: Re: the new guy

Not sure where you are living, but here they have independent MRI locations where the price that I paid was $600 for my MRI of the brain, with and without contrast. The company that it was called was CDI. It is a lot cheaper than the hospital and local lab xray department that is in the doctor offices. Something to check out it you have it in your city.

Good luck.

To: Neurosarcoidosis Sent: Wed, March 16, 2011 12:25:35 PMSubject: Re: the new guy

hello all & many thanks for the warm welcome!

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day.

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

anyway, thanks again, nice to be here

chris (skugger)

Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.Matt

Subject: the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)