< =text/>_popupControl(); Well, after this last bout with RA and RA winning it...we have decided that I am going to apply for disability. The best we are looking at with the Remicade helping me out is that it will slow the disease enough that we can stretch out the major major damage from happening and that I can function in a role as a semi housewife but still needing help around the house from family and eventually when the kids move out...from a cleaning agency etc. We are not getting a lawyer at first as we know I will most likely (but hopefully not) be denied the first go around. Some friends I have talked to don't think I will be...but we all know how this game goes.
I have come to realize thru much thinking and some self bashing that I really need to move on to another acceptance level of my RA. I am getting thru that and know I will eventually accept all of this and things will be better for me when I do. I really must do another adaptation of lifestyle for my family's sake. We are going to get me a nice wheelchair with the nice interchangeable wheels that will allow me to go camping...to the beach..and do all that stuff we like to do but haven't been able to do this year because of me. And we didn't do it because my fat butt was in denial. Our insurance picks up 80% of the cost for a wheelchair. I am sure I can find help for the other 20%.
What I really struggled with and continue to struggle with is the fact that it is OK TO BE SICK. It is ok to rest. It is ok to NOT be supermom...it is ok to NOT be superwife. It is ok to say NO to friends. I have found that if I do not accept it is OK TO BE SICK...then I put MORE of a burden on my family. And that is the LAST thing I want to do. The reality of my life is that I have this dang disease...it isn't going anywhere anytime soon...it has once again shifted to be a little more severe...and I have to deal with it!!!! I MUST ADAPT!! I am not letting the RA win tho. I am just working WITH it. Gotta make something in my life easy lol. I have teenagers!!! LOL!!
I did mess up on my diagnosis date. I thought it was 13 years that I have had RA. Danny corrected me this last hospital admission and said it was the year after we were married. That would make it 15 years that I have had RA. One would think that I would be used to this by now lol!!! But I guess since it is an ever changing disease....you really have to go with the flow and change and adapt with it.
Well, time for the Sunday night card game with Danny and the girls. Tonight's card game...Skip-Bo. I don't know why I torture myself playing this game. Arielle always wins at it. Sheeeesh. This kid could make a fortune in Vegas. There isn't a card game this kid doesn't win at.
((((Liz)))))) I know how much this hurts, but you're taking a much needed step back to look at it with new eyes and decide how much you can do for now. Doesn't mean it can't be different in the future. And I bet you will get quite a hot rod to tool around in!
I struggle with the "it's ok to do this and not do that" syndrome. Maybe for us it's always going to be like that. I don't beat myself up anymore, the disease does enough of that.
Can't wait to hear about your next camping trip. Lindy
Gosh Lizzie...I don't know what else to say except I am PROUD of the great role model you are to those of us trying to figure this out. Thank you for the help, and the care you have given me personally, and the board as a whole. I know this is hard...dang, it was hard to read...but you are courageous, and wonderful!!! I am so sorry for the battle that faces you, but we will be here.
Lot and lots of hugs, shel
But you know I'm behind you on this 110% and you know I'm here when ya need me!!!!!
When I get my wheelchair (way down the road) I PROMISE we can totally have a race!! I might even let ya win.
Much hugs, love, and Good Lucks your way!
P.S. I am sure since you have been hospitalized because of RA, you will get approved fairly fast... probably no year to wait... hopefully a few months.
Liz, I am sorry you have had to reach this decision. But, I know from experience, that it is a step that sometimes needs to be taken. If you have any questions about the paperwork or the process of filing, please feel free to ask me. I have been through it, got my first check in April of last year.
It is not a big amount of money, but it helps pay the doctor and medicine bills.Of course, the amount depends on how much you made the last 10 years of your working life. If you are going to file, you are better off to file as soon as your doctor says you can't work anymore. Make sure your doctor is on your side. That is a huge help.
What has really helped me most is the Medicare. You will be eligible for that two years after the date of your disability, as decided by Social Security. When that time comes I will have some suggestions for you.
Of course right now, you must just accept the fact that the time has come to take that step. I will admit that I, too had a very hard time, not especially drawing disability, but just accepting that I am indeed, disabled. Of course, my cane, walker and scooter are a constant reminder
It is hard to stop working, when you have been doing it all your life. I was a very active person and now my husband even has to do all of our cooking. (He loves to cook, though, and never knew it til I couldn't do it anymore.) Once I kind of accepted that, I had to start thinking about the things I like to do to relax, like gardening, needle work, etc. I am now at the point that I can't do those things either right now. But I haven't given up on some of them. Just waiting til they can get my hands fixed, once and for all. I really do want to crochet and embroider again.
I LOVE your idea about the interchangable -wheeled wheelchair!! (I'm sure that is not the technical name for it
It sounds like your insurance is already covered, even if you are not working. That is great. Some folks really have a problem with that while waiting for Medicare to kick in.
Sorry to go on so long, it's just that I've been through it and want to help anyone who is just starting the process. There is so much to remember and so much paperwork that must be in place, that it can get intimidating sometimes. Just one more thing; save ALL doctors reports and lab and test results. They are essential to filing a successful claim.
I'm sure you have a lot of friends that can help you, but if you need me, I am here for you. You have such a great attitude and great family, that I am sure you will be fine. Just takes a little adjusting, and strength. And you have the strength and courage to handle it well!
Good luck with everything!
Gentle hugs, and much love,
Nini
You may have RA but RA does not have you.!!! < =text/>_popupControl(); Thank you everyone for the support!!! It is time for me to do this. It is amazing how you just *know* on the inside when the time is right to do things.
We did debate wheelchair vs. mobility scooter and we concluded that the wheelchair at this point in life will give me more access to things I want to do. I won't be using it all the time...but it will be there when I need it. At some point I am sure I will have to switch to a scooter or alternate between the wheelchair and the scooter depending on what I am going to be doing on a given day. Right now I will just continue to use the scooters provided by the grocery etc. to zip around with and sneak stuff into the cart with our items in it that Danny is pushing around lol.
Ninil...omg...thank you so much for your offer of helping me with this disability stuff. I looked at the forms etc. online and I swear my eyes jumped out of my head and ran away lol. I am probably going to have a ton of questions and hope I don't bug you too much with them. I had no clue that I am eligible for Medicare 2 years after Social Security officially deems me disabled. I wonder how that will work with our regular insurance we have. Thanks for the heads up on lab reports. I will have to start getting copies of all that info plus medical records from my hospital stays. I had no clue that being in the hospital for this would actually help me get this and hopefully in a shorter time. To us, this is our "norm" for life and don't really think anything beyond that lol. I know the money isn't much...but every little bit helps. It also helps me that I am contributing something much more concrete much faster to the family than all the work that goes into parenting and raising a family that you see only gradually over time. Gives me a little more of an identity that I am more than just "mom" or "Danny's wife". I would be thrilled to be able to pay a bill. I can support my own internet habit lol.
I have great doctors that will back me on this. They are pretty much of the thinking if this is the way we feel about things and this is what is right for our family...then they will back us on it.
Like Lisa, I truly believe that there has been very good things that have come from my sudden (well the past 18 months or so) turn in RA condition. It has allowed me to be home with my girls and give them what I never had....a mom that is there when they come home with the latest girlie drama from school...spending that quiet quality time with them...investing in their emotional well being....etc. I am not a huge shopper but I do enjoy the little time I have to myself between Danny leaving for work and the girls coming home from school.
Everything will work out the way it is destined to. I just need to have the patience (HA! I'm a redhead lol) to let it work out the way it is supposed to lol.
Hi Liz, Hope this morning is a good morning for you. I was just reading thru the posts again. I received disability 2 years ago on the first try but I used an attorney. They took approximately 25% of the award and it was well worth it. They counseled me through every step and did a lot of the paper work for me. That 25% fee was money that I never saw so I certainly didn't miss it. I still received a nice chunk of change in back disability. The percentage of people who are awarded disability the first time is higher if you have an attorney.
The paperwork on your own is daunting and you'll have to track each piece of paper that you send to Social Security. Things get lost. Even though I had an attorney I tracked large items such as hospital records, medical records and had 36 pages of one hospital packet lost. Instead of waiting for the hospital to resend when they got around to it, I went to the hospital and requested a copy of the records and sent registered mail to Social Security. It was faster doing it that way.
I just started on Medicare Oct. 1st. Medicare is almost always secondary to other insurance. We have Tricare for Life (retired military) and Medicare is primary in this instance. Most likely Medicare will be secondary in your case. With us I found out that if Medicare nor my private ins. approves or authorizes then it's still paid at 80/20. I have no out of pocket expenses now. This may work out well for you.
Being in the hospital twice in the last year will be a major help in getting awarded Social Security Disability. A major help! I was hospitalized with a pulmonary embolism directly related to RA, right before I applied for SSD. I had an award within about 6 months of applying.
I probably didn't need an attorney but I knew with brain fog and all of the meds that I was on I couldn't track nor get all the records required by SSD. It will be a lot of running around, tracking, copying, mailing, phone calls, etc. You need to be sharp and on top of everything and I knew that wasn't me at that point in my life. I was homebound and couldn't do any of the work involved in applying for SSD. Stan was working fulltime and didn't have the time to help. That's why I chose to go with an attorney.
The amount you receive is based on your past earnings. In Arizona I will be reevaluated but due to my many complications from RA I don't think there will be a problem.
Like Nini, if you have questions, don't hesitate to PM me. You have lots of support and there are a lot of answers here for you.
Take care and I hope you continue to recover. I'm so sorry about the pain. My pain is nothing compared to yours, Nini, Cordelia or many of the others on the post. I don't know how you all do it. I've said before that you are my heros. Lindy
I filed for disability after re-injuring my back on the job in Nov. '06. They turned me down and I got a lawyer for the appeal but they say it may take another 6 to 8 months to even get the appeal before a judge!! What is a person to do in the interim?? We have used up all our savings in the past (almost) year and without me working, we stand to lose everything we have. How can anyone WAIT so long to find out if they may even get turned down? I was diagnosed with RA in June of '01 and have taken just about every NSAID along with MTX, plaquenil, prednisone(for 6 yrs)! (finally weaned myself off it 3 months ago), and now waiting for Humira to be sent by Ins. mail order.
I have presented an excellent case to SSD but they act like I'm supposed to go right on doing whatever I have done for the past 35 yrs. as if nothing is wrong!
Good luck filing, and I sincerely hope you are not in the state of TN!