It's Been A Long Week

Evening Ya'll:

Well I need to vent a bit and know I can always come here and speak freely. My week started off with my doctor's appointment Monday. I'm so happy my regular internist is back from maternity leave, YAY. Well she was surprised to see all the things that went on while she was away. Long story short, she's talked me into trying fentanyl patches again to control my pain. Then I'm to take demerol for break through pain. She's assured me that I shouldn't have to many side effects from the patches, and that we'll be able to keep adding patches as needed. She informed me that end stage cancer patients have been known to wear 3 or 4 patches at a time.

What baffles me is she said I'm ok to drive a car. I mean I'm taking fentanyl and demerol for pete's sake I shouldn't be behind the wheel of a car. I can assure you if I were to have an accident the police would nab me for driving under the influence. Makes no sense to me, anyway, she was going to contact my vascular surgeon and inquire about having my blood clots removed instead of having me on coumadin all the time. Part of this reason is that with the new DX of RA my rheumy isn't willing to take the chance at giving me humira for the RA. He feels that the risks involved with another immune suppressing drug is to high. Apparently, a blood clot can get infected. The pain and stiffness I suffer with the RA is unbearable so, I'm waiting to see about surgery to correct the blood clots. I'm very very tired and was totally wiped out by yesterday.

Today to top everything off I had my SSDI hearing and left feeling quite down. It was explained to me that you must work 5 years out of the last 10 to be eligible to receive SSDI benefits, as my family household income is to high to receive SSI. Because of that requirement, my SSDI eligibility date expired on Sept 30,2004. So today's hearing was to prove that I was disabled prior to Sept 30, 2004. Any information regarding my health after Sept 30,2004 was not admissible to the court. The judge couldn't hear that I've now got cancer, that I require a wheelchair when going out, how many hospital stays I've had NOTHING. I'm so much much worse since then. I mean I was disable in 2001-2004 but not anything near what I am now. After the hearing my Attorney told I testified well, that we got all the information in my medical records and they should stand for themselves. He had the vocational expert to agree that with my limitations in Sept 2004 I was unable to be employed. He said it's normal in 90% of cases that the judge does not give a ruling in the court room. I was told by the Judge he'll review the court records and issue a decision. I'll be getting notified in writing with in the next 8 weeks. WHAT I SAY, I've been waiting since February of 2004 for my case to be decided. My attorney said if I'm denied we'll appeal it and see where that takes us. I'm just so stinking tired of fighting everything. My blood counts are down again and I'm probably gonna need blood next week. My doctor wants to see every two weeks, and we're messing with my pain meds. I'm so fed up with this all, and to top it all off, I'm just sitting around waiting to get worse. Anyway, that's what is new with me and I just needed to vent, thanks for listening and being here for me. I don't know what I'd do w/o you all in my life. Thanks for caring about me. I'll try to be more up beat tomorrow.

Love,
Barb

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dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Oh Barb, you sweet thing, how unfair that with everything you're going through, you'd have to deal with all this SSDI nonsense. I just don't understand all the bureocracy involved with so many of the government programs designed to HELP people. Your life has become so frustrating and you have so much pain that I wonder how you get through the days. What's involved in removing a blood clot? How great that your doctor is back and is taking care of you again. How's Nikkita doing?

Hang in there Barb and don't even think about trying to be upbeat around us. Save your energy for yourself.

Love,

Pat

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_{Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin}

Oh dear sister . . . surely the judge could see in your eyes how very ill you are. Surely. I am praying for you and that judge, Barbara . . . Hang in there!!! You do NOT have to be upbeat all the time . . . we all crack now and then and that is a good time let all the garbage pour out . . . not good to hold all that in.

Thanks for sharing all the info about 5 of the last 10 years ect. That was very helpful to me as I have been off of work for three full years now and going on four . . . I'll have to really think about going back to work, just in case things get worse later.

I just have a gut feeling that this will work out for you sis. Keep us posted.

Blessings!

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In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

I am so sorry to hear all you're going through. I have been fighting with SSDI also. I contacted my congressman's office and they have helped expedite my case considerably. It's worth a try! I will keep you in my prayers.
God Bless and Keep you
Judy

Oh, Barb. I'm SO sorry for what all you are having to deal with. Hearing the load you've got on you lightens mine considerably. I have been disabled since my car wreck in 1994. I know after all of the stupid paperwork I've had to constantly fill out over the years, as well as the "interviews"; that the only reason I received mine so simply was because I was comatose and they didn't have anyone to argue with. I just hope this judge will seriously look at you and have a heart big enough that even if everything you presented is not quite enough for the stupid government rules, he will still rule in your favor. There are many things in our government that "spit in the face" of those they are intended to help. We'll just all have to pray that it will work out for you. I'm glad for you that the doc you like is back to treat you. Feel free to unload all you can whenever you need to. Please take care of yourself,

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Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Barbara,

I am so sorry to hear of all your struggles. Isn't it interesting, your household income was too high for you to receive SSDI? How much did you pay into it?!?! If you are disabled it should not matter what your income was or is. I am inspired by your sweet spirit and great attitude, however, and am honored to be allowed to share in your "venting". My thoughts and prayers are with you!

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Friends,
SSDI and SSI are different animals.

SSI - Supplemental Security Income - pays benefits based on financial need. This is not related to whether or not you are disabled.

Barbara was not eligible for this due to household income. (Me neither. )

SSDI - Social Security Disability Insurance - pays benefits to you and certain members of your family if you are "insured," meaning that you worked long enough and paid Social Security taxes.

Barbara is eligible for this, and this is what her hearing today was about. (I've been waiting on my hearing....forever? )

If you are disabled, it does not matter what your income is or was, SSDI applies and will cover you if you and your doctors can convince them you are disabled and cannot work, AND you have paid enough into SS to be eligible AND you can meet whatever silly rules they have hidden away.....

I hope this clears up some confusion.

(((Barbara Lee)))

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Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Thanks so much for the clarification. I couldn't understand the discrepancy at all. Lynnwood, you explain things very well. You would make a great teacher! I wish you both good luck on your final results!

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Lynwood . . . SO helpful . . . I know we should be more informed about these issues . . . but they seem so complicated. You just simplified quite a tangled mess. I hope your claim moves along soon as well!!

Thanks and blessings!

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In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Hey Barb, let me know when you are going to be on the road and I will stay home that day! I don't know what I'd do without doctors but somtimes they make you crazy. I just wish you didn't have to go through all of this. If the judge turns you down let us know who he/she is and we can all send him a little note telling him to retired for stupidity. I'm praying this all goes through ok for you. You mentioned end stage cancer. That breaks my heart I can't even imagine what it is like for you. Did your port incision ever heal up? I don't know why you would apologize for not being upbeat. Good grief lady give yourself a break. You are  so much sicker than most of us and let me tell you I'm ready to go into a crash and burn. If this is the best life has to offer with my lungs I have to question is it all worth it. Please let us know when you find out.
thoughts and prayers are with you as always
love
carol

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God Bless

Hi Barbarba
Bless your heart (((((Hugs)))))))) You've been through so much. Don't give up hope on SSID, even though it is a dread right now. I am glad that your reg. internalist is back to take care of you. It's nice to have someone who knows you to take care of you, though it is perplexed on why she would say that you could drive. Anyway, hang in there! We all fight with you.

Hi Pat, Rosie, Judy, Ginny, Sharen, Audrey Ann, Lynn, Carol and Omega:

First off a huge thank you to Lynnwood for clearing the SSDI stuff out for me. I'm having a terrible time at explaining what I'm thinking. I keep trying to ignore that something is wrong but I know I'm having difficulty with my neuro function lately.

I'm sure you're wondering what the heck, she's up at 6:30 in the morning LOL. I feel so bad that Nikita gets herself up and see's herself off w/o me saying by. So I've been getting up and seeing her off to school then back to bed for me.

I'm having troubles getting my patches to stay on my skin any suggestions? I'm going to email my dr. this morning and let her know they aren't sticking. Carol I totally understand what you're saying about is this worth it! I know about your brother and how upset you are about this subject, but it's hard to hang on when your quality of life isn't worth the quantity of life. That's were I struggle so bad with some of my doctors. They don't want to do me any harm, but darn it, my quality of life is miserable and I just don't know what to do.

Well my girl is coming up the stairs so I'm off to talk with her. You all have a good day and I love you all. Hope you all are feeling better and have a pain free day.

Love,
Barb

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dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Hi Barb, I actually looked this up and copied it.
1) PATCH: There is the long-acting patch, called Duragesic. This pumps a certain amount of fentanyl per hour into your system. For example, a 25 microgram patch pumps 25 micrograms of fentanyl into your body every hour. The patch can continue pumping this dose for 48-72 hours, depending on many circumstances. Because the patch pumps a constant dose of medication into the skin and because no pills are used, the patch tends to be the least addictive form of an opioid pain reliever. The patch needs to be put on and held on for a full minute. This way, the patch is less likely to fall off. If the patches seem to fall off, then you can call 1-800-JANSSEN for free patch covers to keep them from falling off.
It also spoke of how dangerous it could be if one were tell fall off and stick to a child if you were to give them a hug or something. So it's diffinently somthing to be concerned about. Not to mention if they fall of you aren't getting what you need.
I hope ths helps
love ya
carol

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God Bless

Hi Carol:

Thanks for this information. This exactly the type of patches I'm using is the Duragesic brand. I'm suppose to change the patch every 72 hours. I just sent my email to my doctor and kissed my girl good bye and she's off to school. I have to say that it itches around the site where I had the patch. I scratched it and the skin peeled right off. My skin is so thin from all the stupid pred.

Anyway, thanks for the information I'll look into the covers. I'm also making sure Nikita doesn't end up touching the Duragesic patches. Have a great day and a pain free weekend. Hope your lungs are feel a bit better.

Love ya,
Barb

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dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Barb, sorry I got to this post a little late. I am SO frustrated for you about your hearing and all the BS that's involved. You of all people should receive disability without question. OUr system just doesn't make sense.

Now onto something more positive. I bet Nikita loved that you spent some time talking to her this morning before she left. I think that means more than being able to physically do things with her. I can tell what a loving and devoted mom you are and I bet Nikita knows how much you love her.

I hope the patches end up working for you - you need some good pain relief. I'm glad to hear you are getting plenty of rest. You are always in my prayers.

Love,
hippi

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barbara... i hope your doing better.. its hard for me to post much but now that i had my thumb amputated i dont hurt as much... as far as your patches not sticking get little alcohol wipes and wipe the area before applying the patches... it should get rid of residue on your skin and help stick better..  as far as SSDI i applied in august of 06 and i didnt qualify for SSI either because we made too much but i was told that i qualified for SSDI and even if i hadnt worked 5 years they would lean back on my husbands income.. but anyways i was approved immediately for SSDI with the minor exception of not getting medicare until august of 08....well through a companay that keeps hiddeen secrets i found out if i was to be put into a nursing home with medicaid pending that i could get medicaid.. well of course i did it but normally it takes 30 days but i was there for 3 months.. and i left with medicaid.. all you need to do is contact nursing homes in the area who accept medicaid pending and they will help you out...thats what i did since i was unisurable...  btw with the duragesic patches i went physchotic(SP?) because between the pred and the patches i went into steroid induced physchosis...so i went off the patches and i loved loved loved demerol... it did great for me... even after my thumb was amputated the demoral in the butt did me good...in the muscle makes it lasts longer...

 

have a question how often did you get your port flushed...because i now have one and i have had it flushed twicee...but the saline they flush with also made me so lightheaded....

 

anyways i hope your doing better or trying too... i know sometimes we feel like we're a burden to our family and sometimes get down feeling like it would be better off as us not being here... but trust me its not you thinking that its all the meds we're on......keepo your chin up..

 

 

amy

Hi Barb, Dave Z here.  Sorry to hear that you are having a continued rough time.  I read your post about problems with the fentanyl patch.  I found a long thread (STARTING FENTANYL PATCH) by stmll and there are some great responses especiall by SkyDancer explaining all about how to use the duragesic patch, I think it will answer alot of your questions.  I found it under S then the topic above on page 39. I also am interested in using the patch as the vicodin just does not give me much relief lately.  Hope to chat with you soon. Take Care.

Hi Barb--
Sorry to hear about the stupid social security but good news about the pain stuff. I drove on duragesic once I got used to it, but you do feel a little like mister magoo so I didn't go far! Anyway, I thought you only had to pay into social security for your last three quarters of the last year before your leave? I guess stuff has changed. I know I didn't pay in for the last five years of the last ten I worked, at least I'm pretty sure. I worked for the school system for a couple and they don't take out social security, I worked as an independent consultant for a while and didn't pay in, my last job for three years I payed in and maybe one year before or a little less. I didn't think it was that stringent. Well, I guess maybe things changed. It's so ridiculous they can't consider your current state of health, since it just didn't happen over night, I wouldn't think, and it is indirectly because of problems you have earlier. I have heard that judges almost never make a decision in the courtroom and mine said I would be notified by mail of the decision but my lawyer said I got it once we left the courtroom. I had a really really good lawyer. Anyway, if the judge has any decency at all you should probably get it. They waited almost the full thirty days to notify me, but I got paid pretty quickly after that. You definitely need fetanyl and demerol to get though that crap.

Keep in mind if you have trouble with fentanyl, there is a medicine called stadol, I took it when I was acutely ill, in a nasal spray form. It is extremely strong, but very effective and relatively short acting (two to four hours). I used it for three months when I was on the end of my interferon therapy and then just quit afterward with no withdrawal, nothing. Many doctors don't know about it, they think stadol is only available for injections. It is prescribed for very very severe migraines, but not prescribed often. I liked it much better than fentanyl, fentanyl made me anxious and I felt bad when it started wearing off. Coming off it wasn't great, so I wouldn't stop it if you don't need to, I probably should have just stayed on it, it does work well for pain. My reaction to fentanyl was different than most people's though, I had to only take a half a patch when I first took it because it was too strong and was making me panic of all things.

I hope that your lawyer gets you through this ss mess with minimal stress and that the judge just does what he should do. I am praying for you and your family and sending good thoughts your way and hope so much that you get to feeling better and that something wonderful happens in your treatment and you just get a whole lot better. I wish you the best and hope the new meds make you feel better.

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Love, Marji

Hi Hippi, Amy, Dave, Marji:

Thanks for responding to my post. Dave I'm hoping the patches will work well for me. I'm just so sick of being sick. Why can't I have a normal hearing with the judge. It's just so frustrating that I can't be judged by how my health is now. Oh well, all I can do is to continue to hope and pray that I win my case.

To answer your question Amy, I had my port flushed monthly. The saline they flush with never made me light headed. I could taste the medication but it never caused that side effect on me. Did you mention it to the nurse who flushed your line. It's very important that the line is flushed correctly and that when using it that it's handled with all the sterile procedures. My port got infected after having it in 3 years being in my chest. The infection was so bad though they had to remove the port. I miss it so much, I've got to be poked and prodded a lot to give blood, or start an IV. I hope this helps some.

Thanks for being here for me. I appreciate all that you do for me and I love you lots. Hope you have a good weekend and a pain free one at that.

Night,
Barb

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dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

If the person called in who is a vocational expert said you could not work in Sept 2004 then the judge has to take their opinion very highly. See they are SS's expert and their opinion is a big deal. Coupled with the medical records you will likely get it. I was lucky my judge told us the ruling at the end of the hearing- he then criticized the state DDS office saying they ignored doctors statements and purposely failed to consider the effect the combination of my problems caused. I have heard that 2/3 or more of cases heard by the ALJs are approved. Good luck and also if they give you too much trouble ask why they can't consider your hubby's work history. Cause they should be able to.

As for the patches I have heard somewhere the duragesic brand has a clear thingie to go over the patch to help hold it on. I would also check and see what kind of cream you can use to protect your skin without keeping the stuff from sticking or the medication from being absorbed. I will pray for you.

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Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone

Barb,

  ((((Gentle Hugs))))  I just wanted to let you know your always in my thoughts and prayers sweetie. I'm sorry your having more problems on top of everything else.

   When I used the patches I had to tape them on. I hope you can find one that will work right for you and give you the pain relief you so desperately need. The skin peeling where the patch is sounds awful. Bless your heart!

   Hang in there sweetie and know you are loved and thought of often. Update us when you can and take care.

                                      Love and hugs, Babs

(((Barb))) I'm so sorry for just responding now... I'm still trying to get caught up on all the posts but I wanted to let you know that I feel for you right now. The stress of all of this SSI and SSDI mess is not what you need right now. I hope your attorney can win it for you. I hope you have had some luck with the patches in the meantime. I have heard about the covers too and heard good things. I hope you can get the pain under control. Thinking about you always.

Take Care

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_"Des"

_{Co-Moderator ~ IBS Forum & Co-Moderator ~ Lupus Forum} 

_{Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements}


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