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Big Flare, SS Disability hearing

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Posted 3/19/2008 9:09 PM (GMT 0)
Do you ever feel like you're sitting on the sidelines and everyone is getting on with their life, having a good time, getting the things done they need to and there you sit because you either can't or don't feel good enough to get the things done you need to, let alone the things you want to do?  Last Saturday night we went out to eat with my husband's sons.  Afterwards everyone decides they want to go rollerskating.  My husband knew I wouldn't be skating so he figured he'd just sit out the sidelines with me while everyone else had their fun.  I almost wanted to just go home, I mean really what fun is it going to be sitting there and watching everyone rollerskate?  It was hard enough getting myself ready to go out to dinner, sit in the car for an hour it took for us to drive there.  It feels like everyone has a life and I have a illness.  Somehow I thought once I got this diagnosis that they'd use a different treatment and I wouldn't be dealing with the issues I've had to deal with; instead I'm feeling worse almost daily.  Last night watching Dancing with the Stars they were making such a big deal about Priscilla Presley's age and her able to do the show.  Tonight was the first night so they're dancing wasn't that fancy, pretty basic.  I thought, I couldn't even get up and feel good enough to do a basic dance and if I did get up and do it anyways who knows what I'd feel like tomorrow. 


According to my doctor (as if I couldn't tell by the way I've been feeling lately) I'm in a severe flare so he's increased my Plaquenil.  After three weeks I haven't noticed any improvement, if anything I feel worse.  I'm going to give it another week or two and then I'm going back in and ask him to do something because I can't continue feeling like this.  Maybe they need to just increase the Prozac lol   Lupus seems to run its course no matter what you do and at least the Prozac would help my depression from it all.  I just needed to vent a little, and I know that you guys understand because you've all been there at one time or another.

I need some advice though.  Tomorrow is my disability hearing and I would appreciate any advice from those of you who have gone through a hearing.  I'm worried that I won't be able to explain myself well enough so the Judge can see I'm unable to work.  So if anyone has any advice for tomorrow's hearing, I would really appreciate it.

Thanks.

Posted 3/19/2008 10:20 PM (GMT 0)
From my experiance with SSD they ask most of the question. The night before I wrote down things I wanted to say and I was able to speak to them.  Do not forget to add things like what you did before you got sick. How it has changes your life and how it has affected your family.

 

 Dress nicely but not to nice no fancy jewlery. Most importanly be honest! It really is not that bad I was out in less then 15 min. When you walk in say hello and at the end thank them for there time. Look at them when speaking eye contact.  They know you will be nervice. 

 

                 Good luck  Denise 

Posted 3/19/2008 10:24 PM (GMT 0)
I forgot to add let him know you are in a flaire and how it affects you. When I am in a flaire my hair falls out. Those things are important my judge comented on that in his report. When I got my report I relized he was the first one who listened to me. Besides my husband. Do not forget he has handled folks like use before

                                                                      Denise

Posted 3/19/2008 10:25 PM (GMT 0)
Tell the trueth-tell about how it was difficult to go out to dinner becasue sitting in a car is difficult. If you have trouble tieing your shoes or dressing tell that if you cant complete simple house cleaning chores or cook a full meal tell that. If somedays you are too tired to stand in the shower or your knee won't flex enough for you to get down into a chair share that. Be honest but talk about the worst 30 percent of your days not the best 30 percent of your days.
Good luck.
Posted 3/20/2008 1:38 AM (GMT 0)
THANK YOU so much for your replies.   I'll let you all know how it turns out!
Posted 3/20/2008 2:27 AM (GMT 0)
Gidget: I did what Tink did, writing everything down, but my lawyer told me I didn't need it, since he had all the hosiptal and docs. reports. I was nervous too, but when I went in, the judge was so nice he made me feel comforable. I was in about 15 mins also. He will ask some question and just tell him how you feel. Good luck.
Debbie
Posted 3/20/2008 2:39 AM (GMT 0)
I only had to answer a few questions, most less than a sentance for the answers. My case was so obvious by the time my records were all included that the judge had pretty much made his decision before I even entered the room. He asked if I had each of my diagnosies and I said yes to each. Then he asked about a few of my problems, but the truth is I had won my case before I opened my mouth. I was still dependent on a cane/forearm crutch thanks to my nerve damage. I really hope that you have medical documentation of all your diagnosies already in your file. Having that and support from your doctors saying you are disabled and giving your limitations will be a very important part of winning.

Looking at your signature I noticed you have Meniere's Disease, I was wondering how you got the dx and what the treatment is. Some of my symptoms make my rheumy think I have it and I really haven't wanted to explore it but things are getting worse in that department.
Posted 3/20/2008 3:40 AM (GMT 0)

redrose,
I have a wonderful rheumy that has written a very good letter stating that I have Lupus, Fibromyalgia and Meniere's disease and because of these three diseases the limitations that I have. I am unable to work and he expects it to continue.  I couldn't have asked for a better letter.  I have a ton of blood test results that are severely high ... like in the 2,500 to 3,000 range (ANA, Anti dsDNA) so there is no denying I have Lupus.  The blood tests are getting worse each time they do them too. 

The Meniere's  was a new diagnosis.  My rheumy told me it is an autoimmune disease and is quite common for people who have Lupus to have that.  I have bouts of vertigo that will force me into taking something to stop the room from spinning and help with the nausea.  I have low level hearing loss and some roaring noise in my ears that I hear a good deal of the time.  They can do all the tests in the world and nothing will tell them that you positively have Meniere's.  It's almost like FMS, rule out everything else by tests (and the tests are expensive) then we'll give you the diagnosis of Meniere's.  And then they gave you drugs that don't work all the time, put you on a water pill and tell you to eat a low salt diet.  I figure it this way, I have Lupus, I can't tell you the last time I didn't have an ache or pain.  I have to quit smoking, lose weight, and now you're telling me I have to go on a low sodium diet.  Why not just lock me in a room and give me bread and water.  I'll do so much but I refuse at this point in my life to let it run my life, the Lupus already does that.

I have a hard time looking someone in the face when I talk to them, I get nervous and look off.  Tomorrow when I see the Judge the most important thing I have to do is keep eye contact with her and tell the truth.  LOL  okay I know, I have to find the words to describe how I feel day in and day out.  I hate getting up in front of people and talking, and even more than one person makes me nervous.  I'll probably end up having to go potty 5 times before I get into the room to talk to the judge lol 

Wish me luck, say a prayer and I'll post tomorrow nite how things went. 

Thank you all for your words of advice and encouragement, it has helped me a lot.

Posted 3/20/2008 3:59 AM (GMT 0)
You know you are at a place where people understand how you feel. You describe exactly how i've felt so much of the time, life is going on all around me, but I can't participate. I'm actually gotten to the point that even if I can't skate, I enjoy sitting there watching! It's taken alot of anger, denial, resentment, mourning and prayer, but finally i'm to the point where I am determined to make the most of the journey and every day God gives me! Go in that court and tell 'em like it really is! You're not only helping yourself, but you're opening a door for other lupies who will face that same judge! God Bless You, Judy
Posted 3/20/2008 6:20 AM (GMT 0)
I looked at the table but glanced up a few times and the judge was more interested in my file than me.
Posted 3/21/2008 12:36 AM (GMT 0)
Wonderful news!!!  Hearing was great, Judge was wonderful and I was awarded disability from the date I filed which was April 1, 2005.  Good news is I'll only be paying the $630 a month health insurance for a month or so till I can get the medicare paperwork in gear.  Finally someone believes me!!!!  She asked me 5 easy questions, talked more to the vocational expert.  What a relief!!!!

tink 2, redrose, sjkly, joinery ... thank you so very much for your advice!

Posted 3/21/2008 1:09 AM (GMT 0)
WOW you got a answer right away. Good going........ tongue

 

more folks are getting it someone on the fibro forum got it to CONGRATS

Posted 3/21/2008 1:22 AM (GMT 0)
CONGRATS!!!! That is wonderful news. Now the big thing will be waiting for the letter in the mail and the money in the bank.
Posted 3/21/2008 2:19 AM (GMT 0)
That is great news. One less thing to worry about. Congradulation.....
Debbie
Posted 3/21/2008 3:07 AM (GMT 0)
So, so happy for you! Congratulations!!! Judy
Posted 3/21/2008 4:54 AM (GMT 0)
That is great news Gidget. I'm sorry you're feeling so bad and that you're in a serious flare. As for feeling different than everyone else...yes, I feel the same way. I try to find things to give me purpose and pleasure that require little energy. Maybe now that some of the financial pressure has been lifted you'll at least feel a little better mentally.
Posted 3/22/2008 4:18 AM (GMT 0)
Thank you everyone, it does lift a huge weight from my shoulders.  It will be so nice to not have to pay the $630 a month health insurance that isn't paying diddly squat.  My lawyer says that I've already satisfied the two year waiting period so it's just a matter of getting the paperwork from the courts and I can go file for Medicaid.

Question ... I was at the rheumy 3 weeks ago.  He increased my Plaquenil because my Anti dsDNA came back at 2700 (it had jumped 500 points in 3 months).  The Plaquenil isn't helping.  I am feeling really bad and it seems like each week I've gotten a little worse.  Do I give the Plaquenil a little more time or should I go back in?  Since I'm at the max Plaquenil dose what will likely be added to my list of meds?  This is scary, I don't think I've ever felt this bad.

Posted 3/22/2008 1:32 PM (GMT 0)
I can honestly say I would go back in. I take Imuran and it works really well for me, my rheumy and I are trying to avoid steroids as much as possible.

Possible medication additions that I know of: MTX, Imuran, Prednisone, Cell Cept(usually only with kidney involvement)
Posted 3/22/2008 2:19 PM (GMT 0)

redrose,
How long did you take the Imuran before you started to feel better?  Are you able to take that while you're pregnant?

Posted 3/22/2008 4:25 PM (GMT 0)
I took it for 2-3 weeks before I felt better but I had to do a week at 50mg then go up to 100 and the 150. Now I take 100mg a day. The only time it might be a problem in pregnancy is the first 10 weeks, but many kidney transplant patients take it their entire pregnancy. I am 30 weeks (31 Wednesday) and am taking it. Since I have a regular OB, a maternal fetal medicine specialist, and a reproductive geneticist who decided which medications I could take safely (relatively since no medicine is 100% safe) I figure the imuran must not be too big a deal.
Posted 3/22/2008 5:04 PM (GMT 0)
redrose,
Do you find taking the Imuran that you get more colds or infections? Is it likely that is what he will prescribe?

As of last week and a $450 24 hour urine there was no protein, so at this point it's just feeling like I have a bad case of the flu. For those who have had a hysterectomy, you know that exhaustion you have for weeks after the surgery (you're fine and then boom! that fatigue hits you ... that's what I feel like now all the time). I've got to do something I can't live like this anymore, hopefully he won't want to increase my pred, I DO NOT want to be on the pred as it is. I'll call on Monday and get an appointment, he's fairly easy to get into see so I should be able to get into see him sometime next week.

Thanks for taking the time to answer my questions.

Are you doing okay? Are you still on bedrest? Is this your first child? You've got a good group of doctors looking after you, that's good you are taking good care of yourself. Do you have family living close to help you?
Posted 3/22/2008 11:08 PM (GMT 0)
I have had fewer infections while on the Imuran though it does lower your immune system. Some may find more infections. The one problem I have noticed is that I get occassional low grade infections that raise my WBC count just a tiny bit but if we ignore it I get really bad sick. I tend to have a CBC every 3-4 months and this has happened 2 times in nearly 2 years- a lot less than I used to get infections.

I will be on bedrest until I deliver. This is definately not my first baby, actually I have a very complex pregnancy history that I really am not up to explaining right now. Unfortunately my husband and I live several hours from my family (fortunately we live several days from his as we would have to put up with my mother in law every single day if we lived closer- she is a total b&^*^ to both of us). So help is kind of hard to come by. Now all I have to worry about is getting through until the hospitalize me for the pre-eclampsia and getting the rest of the baby stuff I need.
Posted 3/24/2008 2:22 AM (GMT 0)
Most important is you take care of yourself and give this baby as much time as it needs before you deliver.  Do you know if it's a girl or a boy?  I just found out this afternoon I'm going to be a step-grandma in October!  I am so excited, I cannot wait.  They live here in town so we'll get to see the new baby a lot.  tongue tongue tongue

I made it through Easter.  We went to church this morning and a few of the men thought it would be funny to squeeze my hand when they shook it.  I even had a splint on so I wouldn't have to shake any hands ... then they laughed when I said oh that hurts.  I don't understand why they get a quick out of being cruel.  I managed to make dinner but collapsed after that and took a nap.  When I woke up it was dark outside, now I'll probably be up half the night.

I'm going to call my rheumy tomorrow and get in to see him this week.  Hopefully he'll do something other than Pred because I don't tolerate that well.  You're in my prayers redrose!  Hugs!

Posted 3/24/2008 3:49 AM (GMT 0)
They are pretty sure this one is a boy. The doctors say as long as I get to 32 weeks the baby will be fine, he just might need a few weeks in the NICU but long term problems should not be an issue since he is growing well and I am not an adict. I think my body is nearing the end of what it can endure as far as the pre-eclampsia goes, I am having contractions tonight- not often enough or regular enough to go to the hospital but enough that I took an extra 30mg of my procardia (treats blood pressure and contractions) and am drinking an extra 1/2 gallon of fluids as I type. If things don't calm down I will have to go in tonight and may need to be seen tomorrow anyway. Right now I just need to wait and see if things calm down in the next hour or so.
Posted 3/24/2008 4:29 AM (GMT 0)
Gidget,

It took about 2-3 months for me to really feel a difference after starting plaquenil, which I believe is the norm. Also, congratulations on your hearing. It still amazes me that some people still have to fight to get disability for lupus. It's bad enough fighting the disease, let alone the "system".

Robin
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