Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I applied for SSD again . . . Round 3

Hi Bridget - if 60 mg was just starting to work, maybe try that again but make the taper much slower so it definitely has time to work. How slowly did you taper this last time?

Hi Bridget- I am sorry to hear that u and ur family is having such a hard time. I know about the depression that goes along with chronic pain and having guilt of not being able to do what a healthy person can do with and for their family. I was just wanting to let you know that when i was applying for disability(2 long stressfull years and still trying to get out of debt from medical bills and medication)my lawyer who i hired as soon has i filled out paper work did what he called a docket hearing, if he could prove to the judge by viewing all my medical records that i was disabled and should have been granted disability from the start i would not have to have a hearing in front of the judge. It worked the day b4 my hearing my lawyer called which i thought was to prep for hearing he instead gave me the good news that the judge agreed and approved my disability. It was a sigh of relief, people with chronic illiness don't need the added stress that just makes it worse for us. I know what u r going thru right now trying to take care of a baby who by the way is darling and your animals that u love is very challenging. We have 2 dogs 1 we rescued from getting hit on a highway which 1 of his friends he was with did get hit and chance( i thought the name fit since we were giving him a second chance for a good life) would not leave his friends side even animals have better love and understanding than people. I was even on my way to my doc appt but cancel to rescue him. We also have 1 cat and a bearded dragon and that is alot for me to take care of i could not imagine taking care of horses my body would not allow to go out in the cold no way. There r days i have dishes in the sink that i can't even get into the dishwasher cause the pain and fatigue r just to much then the depression kicks in cause you feel like ur life has been taken over by this illness and the person u use to be seems to be gone but ur adorable baby and husband also ur animals keep u going cause love is stronger than this disease and for your co-workers they need to try and i said need to try to walk in ur shoes for a week. We need to surround ourselves with positive people. I myself had to split ties with my in-laws who live a few acres away, cause they didn't understand why my laundry would b piled up and not finish (i have 2 weeks of socks and under garments cause i am not always able to get laundry done) Or why my dishes were still in sink or my sons toys were out and house a little cluttered. I cook healthy meals and spend time and do homework when i am able to those r the memories my son and husband will remember not if the house was picked up atleast i kept surfaced wiped down i hate germs. But the 1 thing that made me tell them to stay away is when i heard them say she just lays around and gets a check. That hurt so i told them i know i look healthy on the outside but you would not be able to walk in my shoes and like i really wanted to leave a career i loved and pay was not bad at the age of 35 my social security check is lower than my paycheck cause of my age. We moved away from all our friends from where i grew up to this farm to build our dream home, i was not yet dx with AS only having back surgery before we moved and after 3yrs we still r building or i should say my husband has done most cause myself just lays around all day ha ha, to finsih about moving 2hrs away from my doc and friends cause we wanted a better life and thought we were wanted by my husbands family only when i could not help in-law with her son who has autism thats when negative comments were made, people can be so mean so i guess what i am saying u don't need negative people in ur life while being sick, so applying for disability though i know it was hard to do is probably the best thing right now.

I know reply was long but i felt like venting. Take care of yourself and hope u feel better soon.
I will keep my fingers crossed for your ssd, by the way can you get ssi til ssd is awarded to you atleast you could have some income and a medical card

Wendy - I did 7 days coming down from 60mg. I left a message with my rheumy today asking for advice. my nurse-prac is so sweet, she told me she doesn't know anything about it but she'll write any rx I need if the rheumatologist tells her what to do.

Laurie, I so understand what you mean about cutting ties with negative people, I've had to do that more than once myself, and it's hard, especially when they're family. But you're right, we absolutely need to surround ourselves with nice, warm, understanding people, especially during a flare.

I am SO wiped out from just going to the clinic. Going back to bed, hubby feels rotten too so I think I'll go snuggle him and maybe get a nap.

hugs,
Bridget

Awww Bridge, I'm so sorry to hear this isn't getting any better. I once had to stay at 60mg pred for a month before I tapered down. It was the only way I could function, and nothing else helped.
Hang in there.

Great!! Yes I think she has used the same company that Brad used. They seem to get very good results. Good Luck!!

Dang it, Bridgette, I'm so sorry to hear that you are getting hit so badly right now. We've been so lucky here in Michigan to have an almost snow-free winter for a change, but I remember all too well just how nasty that white stuff can make it for us KAers. The real bite, of course, is that the snow is just one of the problems you're facing right now. I know that what I'm about to say might well drift into the area of full-blown heresy for an outdoor woman such as yourself, but I just wondered if you and Cody have given any thought to moving to a nearby town or city where you'd have more resources available to you? I don't suggest this lightly, trust me, as I know how incredibly important your animals are to you, and how much you love the way you live now. No, I only bring it up because I get so worried about you when I think about how isolated you are at times like this when both you and Cody have been hit so hard by physical ailments. With Cody having his broken leg right now, do you have friends and family who are coming out to help out on a daily basis, Bridge? I sure hope so. I'm a chronic worry-wart to begin with, but when you throw country living into the mix, it just makes me worry even more! Like I said, forgive me if my suggestion simply crossed the line--I said into heresy, but perhaps blasphemy would be more fitting!

As for your SSD, I sure hope you are able to get this approved this time. It is utter crap that you have gone this far facing nothing but denials. I've never heard of that whole "have to apply before using a lawyer" business, and I'm not 100 percent certain that's true. I know when I filled out my application, pretty much the entire thing was handled by Allsup, a firm my insurance company set me up with so that my claim would go easier and faster. Not everyone who works at Allsup is an attorney, but a large percentage of their workforce ARE attorneys, as they see your claim through from start to finish, including all appeals. I know that I absolutely did talk to them--and plenty--before I ever submitted one sheet of paperwork, which is why that lawyer's statement sounded so odd to me.

Whether he's right or wrong is really irrelevant though, I imagine. I know Allsup provides services all over the place, but I don't have any idea if that would include your neck of the woods. Also, I have no idea what they charge in a normal case, since mine was totally paid for by the insurance company. In your case, since you absolutely have to get your SSD approved this time, and as quickly as possible, it might be worth checking out their website to see if they can help you out, Brige. I would think that they would offer a program where you only pay them when you receive your initial large back-payment check (which I am certain you'll receive), so perhaps it wouldn't cost you anything up front. If that's the case, and if they do work in your area, then I cannot recommend them highly enough. They were a joy to work with, and they handled my claim so well that my claim was literally approved just TWO WEEKS after the SSA received the last piece of paperwork. Here's a link to their website:

Allsup


If they don't work in your area, or they don't have any kind of lower-cost program, then I apologize for even bringing them up and possibly raising your hopes.

Take care the best you can, Bridgette, and please keep us posted. If there is anything we can do--a care package, anything--please do NOT hesitate to let us know (drop me a PM if you'd rather).

Brad

As usual, I posted before I read other replies, so I just saw Chris's post, plus the one where you mention that Angelmom forwarded the name of a company to you. Yep, Chris is right, she also had good luck with them, which I had forgotten. Also, now that I think about it, they might be mentioned a few other times in the SS forum here--might be worth a search.

Brad

oh, Meg, there's no way I'll do 60mg for a month, no way in heck. I had enough problems with pred side-effects a few years ago, but since Bailey was born and my hormones are all whacked (like seriously screwed up). . . I turned into a raging fire-breathing biatch on only 10mg/day, and I started feeling the emotional instability after only 5 days on it this time.
I'm going to do another countdown, my rheumy wants me to start at 60, so I took 60 today, and it'll last 9 days.
After my appt this morning Cody and I just went back to bed and slept until 2pm, we were so exhausted. haha.
I finished a really gorgeous new necklace last night . . . I'm proud. gonna post pics on myspace and facebook now =)

Brad, thank you for the great advice! I'm so glad they sound so competent and awesome, I'm definitely going to try to work with them.
As for moving to Town . . . hel1 no, basically. We lived in town for 9 months, and it nearly killed me, and besides we couldn't afford to live there financially . . . we have 2.5 acres, 3 bedrooms, 2 bathrooms, a 2-car garage, a tack room, 2 porches, and a hay shed, for $79,000. Can YOU find that in a city? And honestly, we're a lot closer to "town" than I ever was growing up . . . I grew up 30 miles from the grocery store, and now we live 15 minutes from a 24-hr Walmart, Walgreens, McDonald's and 2 clinics, so it's not like we're 100 miles from nowhere. We also have neighbors we get along with, who are really cool and help us out (they're also gunning for the wild dogs . . . lol). It's not like we're gonna die and our bodies will lie here rotting until the spring thaw or anything. =P
and we have STARS at night . . . and crickets (seasonally lol) and antelope come through our yard (haven't attacked my garden so far, so they're ok) and honestly I couldn't survive without those things. Wild dogs and snow are things I can deal with (I owned a gun before I knew what 9-1-1 was, my dad was a hunting outfitter and I guided hunters in high school) but I just couldn't survive Town. I have a suture kit and lots of veterinary supplies . . . lol
*hugs*

OK, I feel much better now! Although, to us city-dwellers, 15 minutes from a Walmart might as well be the outer boondocks!

I really, really hope Allsup works out for you.

Brad