In the Dumps

Ladies,

I am down in the dumps and have been for awhile now.  Ever since going back to work or actually since my surgery in December I have been experiencing such flares that won't quit.  I belive the Enbrel is no longer working and have to approach the Rheumy about this on June 9th. 

I still have all this unexplained muscle pain, then to top things off I spent today in the Emergency Room for what I thought was a Galbladder attack  only to find out it is a Hiatal Hernia (suspected). Now I have to go for a UGI Swolling test (what ever that is). 

This is the follow-up to havng to lay folks off when I went back to work in March. April was a bad Flare month and mega overtime for this reorganization of 3000 employee's in my division. Mother's day I left the freezer open and accidentlay defrosted 500.00 worth of meat and spent the entire day cooking before it all went bad.  Followed up this weekend with my dryer breaking 200.00 to fix that, the garage door broke 400.00 to fix that.  Oh yea during all this the insurance company stopped paying for PT until they determine if i really require it for my disease...(that's not going over well).  Then the Insurance company was suppose to put my son on cobra and instead dropped the entire family. I couldn't get my scripts of Enbrel or MTX filled until last minute. 

Then today I wake up with chest pains doctor sends me to emergency room and now this Hernia thing. Is there anything else that could go wrong? 

Oh yea found out today we are not getting Salary increases!!!  Way to GO!!!... 

Well I am done whining and I am hoping this year gets better because anymore of this and you all will be seeing me in the loony bin!!! 

Oh Tess, I'm sorry you're going thru such a rough time.  I hope you can find a new drug to replace the Enbrel. I still haven't received my Humira.  I am so anxious to get started on it. I just hope it works better than the Orencia did.  Remember how stress brings on flares-Try to find some private space each day to try and center yourself and relax. I know that sounds almost impossible, but remember u are worth it. I've been contemplating that myself.  I think for me it may be prayer and devotional time in the afternoon before my nap.  Find something.  I think u are just working yourself past exhaustion and your family some how needs to step in and help a little more. I know u want to do it all yourself-but sweetie u aren't superhuman like Superman.  U are just so willing to help everyone else u forget about  yourself.   Luv ya (big hug!)       Vicki

Awwww.... Tess! I'm so sorry! I don't know what to say, other than hang in there, it HAS to get better (which I realize doesn't help). Or, instead of "Goonies never say die!" maybe I can just say "one armed Italian pirates never say die!"

[[gentle hugs for Tess]]

Thanks Ladies, Yesterday I spent the afternoon just sitting in the warm water pool and watched my son and grandkids play.  It really helped a lot. 

I have started the conversations with my family about me considering raising my hand for the next staff reduction and/or going on Long term disability at this point.  I know i haven't had all the replacements of my joints but I am not sure I can live with the amount of pain that the other than RA is causing if we don't determine what it is all coming from.

The doctors are now arguing amoung themselves on if itis galbladder or the Hiatal Hernia...So I made the appt with the surgeon and have him to in and take a peek at this point after he runs all the necessary tests.  Though I do have to have the galbladder removed there is 9mm stone in there so it is the matter if he fixes the other problem also aat the same time. 

Stuff never ends...  I would like everyone's opinion if possible. Should I raise my hand and get 20 - 26 paid severence and then file for disability or just go for the disability out of the shoot...  Not sure if I will get the Social security at all eventhough the doctors agree. 

If anyone knows please let me know or I will go see a SS attorney. 

Take a look at my facebook to check out the grandkids: 

http://www.facebook.com/profile.php?id=1370119223&ref=name

Hi Tess,

I so sorry to hear you have hit such a rough patch.  Re disability really check your options well and look for what is best for you for the long term.  I have disability through my work - but our catch is it can take quite some time before they will decide if you are covered in the meantime you've not been working and could be faced with no pay if they disallow the claim.  The problem with insurance is they make thier profit by disallowing claims- but then I know I am preaching to the chior here.  I would speak to a SS attorney just to see what they think.

hugs,

bigted

From what I've heard, SS always denies your first request to go on disability. You might have better luck if you work with an attorney from the outset. [[hug]]

Tess,

I hate to see you going through this.  You are such an inspiration to me, really, so I definitely think you deserve better.  Is there any way you can take extended time from work to decide if you for sure want to go the disability route?  The only reason I ask is b/c I stayed home from work the past three years due to the R.A.  I knew full-time teaching was not something I could physically do anymore, so as you all know, I went back to school to get my MA in counseling, figuring it was something more physically feasible.  Well, I am doing my internship now, and though my body is definitely getting adjusted to the work load again, I am so much happier feeling useful again.  The three years I was out of work, it took such a toll on me emotionally, socially, and definitely financially.  The lesson I learned too is that I spent so much time trying to find ways to cover the bills and my medicines, and then bending over backwards to meet my friends around THEIR work schedules just to see humans again, that I probably expelled as much energy as if I were at work.  (Though those naps wouldn't have flied at school, I tell ya

On the flip side, I can only really work now b/c the Remicade IS working AND I started pain management two months ago.  Between the Remicade and the pain pills, I have strung 1/2 a life back together.  So if the Enbrel has stopped working, I KNOW it is all you can do just to put your work clothes on in the a.m.

BUT! Take this from one who spent EVERY night researching this disease, and who was fortunate enough to work with a doc willing to be super aggressive; once one biologic stops working, others WILL, even if you have tried them in the past and they did not work before!  I swear!!!  As we all know, this disease is super complicated, and evidently it can morph and change as our body chemistries change.  So somehow, the biologics can work at times when it didn't work at others.  So don't give up.

And Tess, you probably don't even know this, so I'm going to tell you, YOU are one of the reasons I believed I could ever return to work again.  You and a few others here.  I was SO inspired by your determination.  If I didn't have you guys as role models, I probably would have never went back to school or tried working again.

Lots of love,
Kati

Previously Carolan Ivey wrote:

From what I've heard, SS always denies your first request to go on disability. You might have better luck if you work with an attorney from the outset. [[hug]]

That was not my experience.  I would not use a SS Attorney, it will just suck money away from you.  I am on SS Disability and have been for 21 yrs now.  It is very easy to apply for.  I was told it would take 3-4 months before I would hear anything but, I was approved in only 35 days. 

There is Nothing an attorney can do that you can't do yourself.  Apply right now.  If you are approved and it turns out you don't need it, that's OK.  At least you will have the peace of mind that you will have income coming in. They also have programs in place now that encourages you to go back to work so even if you are making some money, you won't lose all of your SS.  You have nothing to lose by applying.   Plus, when you are on SS Disability, you automatically have to be on medicare as well.  That was frustrating for me at first because you have to pay a monthly premium and it seems like they don't pay for many things.  However, I just started Orencia and they will pay for the 20% that my husbands insurance doesn't.  That is a true blessing!

This is so hard Tess!

I was on Enbrel for 9 yrs.  It seems like the last 2 yrs, it has not worked very well for me but I hate to start all over again so I just continued it. 

I know it is very difficult but, start every morning finding things in your life that you are grateful for.  Focus on those and lift those up to God and Thank him for those things.  

                        My life was very similar to yours.  It seemed that one thing after another kept happening.  It went on and on and finally I felt broken and like I couldn't take 1 more thing.  When my husbands job got worse and we began to get $400/month less take home (Plus NO RAISE for almost 10 yrs now!)  and 2 of my older kids were also diagnoised with RA (they are 21 and 23), and my 21 yr old rolled our only good car with my youngest inside (they were fine, car totalled) and the long term disability status was taken from me at my old Employer (cargill) because the person I spoke to assured me that wouldn't happen if I took a lump sum settlementment instead of getting a monthy check from  Cargill. but as it turns out he had no idea what he was talking about.  (that is the shot version) Because of losing this I also lost my Medical Insurance through them and also now had no way to pay for RX for me or my family and my kids no longer had routine medical coverage.  Plus, My oldest was in an accident on Campus and lost her vision in her left eye.  We now have to take a loan out almost every month just to pay our monthly bills.  Thankfully we only have our mortgage and 1 cc that we pay off monthly. 

Well, There is more but I think you get the idea!  I knew I had to change my focus and start looking for the good or I would never make it through.  It could no longer do this on my own.  I turned it all over to God so I could get peace.  He provided for my RX.  I was able to get a Grabt that pays for RA medicine.  Plus since Orencia is given in the Docs office, I no longer have to pay for that so it is actually less expensive than Enbrel was.  My oldest is now very familiar with the free clinics and found a dr who wrote her a new RX so she could get her meds needed.  We also found grants and programs out there to help cover the cost so she is ok there.  I am now working on the rest of the family.

It seemed like the more I would focus on all the bad things, the more bad things would happen.  The Law of attraction if you will!  As I began to shift my thinking and being more positive, things began to improve.  It still isn't always easy.  My pain lately has been worse because now I have Osteo.  I stopped drinking a natural supplement in the midst of this and that really made things worse!  I always have to "test the waters" if you will to see if something is really working.  Not a good plan with so much stress and life happening!  So back drinking that and now just started Orencia recently.  Praying for the best and for God to "handle" all of the details of every part of our life.  I know he will.  I just need to be patient! Very hard for me  LOL......

I encourage you to apply for SS Disability immdiately. YOU DON"T need a lawyer.  It was very easy to do, just a little time consuming. All they would do is what you can do yourself.     Like I said in a different post, If you are approved and don't need it, thats ok.  At least you will have the peace of mind knowing that you will have some income coming in if the stress of your arthritis and job and everyday living gets to be too much.  I was approved in 35 days.  I cried.  I couldn't believe I was actually now Offically considered Disabled, that was a tough one. 

Gods Blessings to you Tess!  It will get better.....

Carla

Here is a verse that has helped me:

"Blessed is the Man who perseveres under trial, because when he has stood the test, he will receive the crown of Life that God has promised to those who Love Him."  James 1:12

Previously TessaD wrote:

Ladies,

I am down in the dumps and have been for awhile now.  Ever since going back to work or actually since my surgery in December I have been experiencing such flares that won't quit.  I belive the Enbrel is no longer working and have to approach the Rheumy about this on June 9th. 

I still have all this unexplained muscle pain, then to top things off I spent today in the Emergency Room for what I thought was a Galbladder attack  only to find out it is a Hiatal Hernia (suspected). Now I have to go for a UGI Swolling test (what ever that is). 

This is the follow-up to havng to lay folks off when I went back to work in March. April was a bad Flare month and mega overtime for this reorganization of 3000 employee's in my division. Mother's day I left the freezer open and accidentlay defrosted 500.00 worth of meat and spent the entire day cooking before it all went bad.  Followed up this weekend with my dryer breaking 200.00 to fix that, the garage door broke 400.00 to fix that.  Oh yea during all this the insurance company stopped paying for PT until they determine if i really require it for my disease...(that's not going over well).  Then the Insurance company was suppose to put my son on cobra and instead dropped the entire family. I couldn't get my scripts of Enbrel or MTX filled until last minute. 

Then today I wake up with chest pains doctor sends me to emergency room and now this Hernia thing. Is there anything else that could go wrong? 

Oh yea found out today we are not getting Salary increases!!!  Way to GO!!!... 

Well I am done whining and I am hoping this year gets better because anymore of this and you all will be seeing me in the loony bin!!! 

Hi Carpoo6!  Glad you're here, and thanks for setting the record straight re: SS disability!

Hi Tessa,

Crazy deadlines at work, and a bad computer connection kept me from the boards for a while, but now that I am here, I am so sorry to read about the tough times you are having.  Like Kati said, you are the rock and inspiration for so many of us.  You have done and said so much for so many.  I am glad you will be taking some time to take care of yourself.  I have no info or advise on SSI or disability, but hopefully others can offer their good advise.  This is a rough time,  a big bump in the road, and a time to re-assess priorities, but I also know you will make good choices, and get through this, and come out feeling strong and good about your decision.

Ladies,

Thanks for you support. I know I am usually the positive one, the one still doing and going. I know that recently the disease is winning or there is something else definitely wrong with me. I sit here feeling as though someone or something is squeezing my shins, forearms, upper arms, collar bones etc and just squeezing the HECK out of them. 

The Warm water was working for awhile but not right now. The Vicodine helps but I can't function on it and keep work straight.  I know the stress needs to be dealt with soon.  I am being told at work it will only get worse for the next year or so...can i hold up? 

I will take the time to logically think this through and talk to the doctor and get his input; plus he would have to sign the papers and testify to SSI if necessary.  I know my Chiro believes I need to start considering it but the Rheumy hasn't said much.

Thank you all for you input, advise and blessings.

Tess

I'm so sorry to hear that you're going through such difficult times. I will keep you in my prayers. I need to visit the board more often as it seems that you all are the only ones who truly understand the mental, physical, emotional, and even social agonies that this RA brings on. I, too, am considering disability as an option. My daughter receives Medicaid. I was laid off last year and have almost exhausted my 1st Unemployment extension. Disability denied me because of the Unemployment but I can't afford tolet the money, as little as it is, go. Nothing is getting paid but groceries and phone and I have no one to help. I've had RA since the age of 8 and I'm in pain every day. My hands, hips, and feet are deterioratin quickly. I wish I could just get any old retail job so that I can save myself from completely sinking financially, but I can only walk or stand for about 15 minutes at a time before my hip goes out on me. I take Aleve for the pain but its just ennough to get me through the day. In any one's experience with Disability, because I haven't been to a rheumatologist in over a year, will it hurt my chances of receiving benefits?

Deidra, Not sure if not seeing the Rheumy would hurt or not, but you need to file the papers. I have spoken to some folks here locally and if you have a good attorney to assist they will send you to the doctors that will help get the paperwork signed. 

Even after all this time I am still in a quandry on what i am going to do, one day they are laying us off the next they are not.  What i do know is that if I would have to go work outside of the house (i work from home) I am not sure if I could.  I do try to walk 1 mile every other day on a treadmill but to be honest it takes me 45 mins to do so.  I am swollen for hours afterwards and the only relief is the warm water pool.  

I am just not sure if I want to continue with nursing my wrists and hands all night long just to work the netire day again the next!..So do i give up feeding myself so I can stay employed? 

Ladies I know I have been that rock for many many years. I did it all I did the ballroom dancing when they told me NO.  I Climbed DiamondBack Mountain in Hawaii when they said i couldn't (oh boy that made me suffer for a few days). 

I think it is time that I start taking the time to enjoy myself and use my energy to take care of my grand kids versus Typing all day. Or giving my all to a company that no longer appreciates what you give them or what theey TAKE.  This is the conversation Rheumy and I are now having.  Me to be strong for my Family!!!  I don't want my tombstone to read "She worked hard" I want my granddaughter to remember me picking her up and doing her hair not me just pattin gher on the head!!  It hurts both physically and emotionally right now to do this. 

Deidra I would call somoene in your area to find out how difficult it will be to receive the SSDI with out seeing the Rheumy but your primary should be able to step in if you ahve been continuing treatment from them

Good luck

I hope I dont step on toes here, but I didnt have insurance(and still dont) when I was diagnosed. I had to file for SS Disability, and yes, I was denied 2x. I am still waiting for my hearing a year later. Many people dont realize that you are entitled to a hearing after your second denial and it is difficult to get that hearing without an attny. My joints are already damaged after only 4 years w/RA, my Dr. has declared me disabled and unable to work...yet the govmt's Dr.s suggest I work part-time and claim I am under treatment! My treatment- I eat 4- 200mg ibuprofen EVERY 4 hours like clockwork. I couldnt take any meds my Dr suggests due to a skin condition (open skin infections) that I have had since I was 10 yrs old. Nor could I afford them if I could take them. I am thinking of switching the ibuprofen for M&M's-at least they taste great. God bless all of you- you give me hope through your experiances and advice to each other.

Colleen

Tess,

I didn't mean to put any pressure on ya.  I simply wanted to let you know that I admire your strength.  Please do what you know is best.  It takes strength to keep going, and strength to know when you have to back off of something to preserve your health.  I am still very very proud of you!

Let us know how it goes with the Disability.  I'm sure it is a battle we will all face sooner or later.  I'm hoping later, but you never know with this disease.  In fact, did I tell you the latest?  I got diagosed with Scoliosis this week.  Yep.  Means either a brace or surgery. I'm not sure yet if one has to do w/ the other (the RA and Scoliosis), but I do know that my Dr. says someone should have caught it a lot earlier.

It seems for us, we all got five extra helpings of aches and pains the day God was handing them out. (Maybe I mistook it as the line for long legs, b/c I sure didn't get those.)

Kati

You didn't put any pressure on me sweetie so don't even think about it.  Now for your Scoliosis why would they consider surgery now at this age? i was diagnosed with Scoliosis ast 11 years old and was being fitted for a brace when they stopped and said you are finished growing there whould be no reason for it or the surgery..  So I am 27 degrees off center to the right. Your doctor is right it should have been caught earlier though it can go years with out detection depending on the severity of it. 

I am was 46 when they determined that my scoliosis, gentically fused disc's and the displaced hipsockets I was born with is known as Klippel Feil Syndrome.  So one never knows why somethings go undiagnosed.  Scoliosis is either visable or only detected via an Xray of the FULL Spine. 

Keep me posted on why they would wnat to continue with a brace and/or surgery unless you are still growing talller.  I go to a chiro for mine to keep it in check. 

Also, The rheumy filled out the start of the Short Term Disability forms, I have to be on STD for 13 weeks before we can file for Long TERm so we have started, I will be however consulting an attorney since I was refused the 66 3/4 pay due to a PRE-existing condition of RA..we want tomake sure they can't get out of the 50% because of it.  So it begins. 

I get confirmation in the next couple of days if the company will accept the start of this from now until September to see if the Orencia works!! 

I'll keep you all posted.

Tes

Tess,

The diagnosis of scolisosis is so new. I'm sure you know so much more about it than I do. I just know they said surgery would be a possibility depending on  the severity of the x-ray, but maybe they meant down the line.  In any case, I am going to avoid it for as long as I can, like until I'm 86. I hear back surgery is rarely helpful.  I think it will be a brace thing.  I'll keep you posted!

And you keep us posted about the disability!  It is true that this economy is hard on everyone, but especially the elderly and disabled.  (You, of course, are the latter!)  I will keep you, along with all the creakies, in my prayers!

- Kati

Kati,

Thanks, I am still sort of stumped on why they suggested surgery so early in the diagnosis of the Scoliosis, but every doctor is different.  Before  you agree to any type of surgery make sure you do all your homework. And on this one feel free to reach out to me, I am more then willing to chat with you. Even though I am not a medical professional; I was faced with the decisions myself at an early age and I would be more than happy to help you research it on the net etc.

Tess.

I applied for disability and I started the process myself and was denied and I reapplied the second time and was denied and the third step is requesting a hearing by an administrative judge.  It took three months to get my hearing, now I have to wait 30-60days for that decision.  When I applied for the second time I went to a legal clinic and they dont charge anything.  It is strictly pro-bono.  My attorney was there for the hearing with the judge and any other process from there on out.

Maybe call the united way agency or some type of social service agency to get a listing of some of your cities legal clinic's and start from there.  Like I said the first two steps you can do; but by all means  get a pro- bono lawyer for the hearing process.

Previously deidra johnson wrote:

I'm so sorry to hear that you're going through such difficult times. I will keep you in my prayers. I need to visit the board more often as it seems that you all are the only ones who truly understand the mental, physical, emotional, and even social agonies that this RA brings on. I, too, am considering disability as an option. My daughter receives Medicaid. I was laid off last year and have almost exhausted my 1st Unemployment extension. Disability denied me because of the Unemployment but I can't afford tolet the money, as little as it is, go. Nothing is getting paid but groceries and phone and I have no one to help. I've had RA since the age of 8 and I'm in pain every day. My hands, hips, and feet are deterioratin quickly. I wish I could just get any old retail job so that I can save myself from completely sinking financially, but I can only walk or stand for about 15 minutes at a time before my hip goes out on me. I take Aleve for the pain but its just ennough to get me through the day. In any one's experience with Disability, because I haven't been to a rheumatologist in over a year, will it hurt my chances of receiving benefits?

Deidra I've been on disability now for about 9 years but I do remember that when I applied

the Rheumatologist report is very important,even more so then a family doctors. The most

important thing your doctor needs to say on the form is that you are unfit to work any job.

See a rheumatologist get the report and apply again,if you are unfit to work they cant refuse

but you need the doctors to back you ,if your doctor doesnt back you get a new one...

Tk good luck Yvonne

thanks for all the info ladies because it is time for me to start all the filling of the paperwork for both Long Term Disability from work and SSDI... Doc states he will fillout the necessary paperwork. 

Guess i need to make sure he has the wording correct...

Thanks again. Tess