Disability and MSK in Ind.

Hi, I have'nt been on here in a long time..I cant even begain to explain how much I suffer from this now..I went from a person working a full time factory job as a welder 22 years along with the last 4 years also working every other weekend and hoilday as a nurse's aide at a Hosp...Now I do good to wash a small sink of dishes a day and maybe wash a load of clothes.. I have NEVER been a lazy person..Not only do I suffer but it also so brakes my heart not to be able to do simple things right here in my home..I have appiled for SS Disablity I live in Indiana Dec. 7th 2010 so far I am at the appeal step where they set a court date that was filed  by my Lawyer May 9th 2011... As I set and wait I am now losing my health insurance because I have been on Med. leave for over a year as of Oct 14th 2010..Not only am I losing that but also I lose my little sick pay checks from work...they were never much compared to what I make or what I would draw if I was drawing unenpolyment but I thanked God for getting them just the same..And of course I can not draw unempolyment because I am on a Med. leave...This has been besides the most PAINFUL thing I have ever been through also being the most stressful...I have had to battles with cancer and most of my left breast removed less then a year ago and still by far the Socical Sercuraity Disabliaity has been my most stressful by far...Isnt that sad, and to think we worked all those years and paid in just in case someday we were to need it.. God Bless you for taking the time to read this...

[MSKshelly]

Hang in there Jessica, hope to talk to you soon!

Shelly

[KidKrisNey]

Hang in here!  I have only made it to work 6 days since the middle of August and I have an appointment with my nephrologist to discuss temp disability next week. I'm officially out of sick time and cannot afford to take any more time without pay.  I have no other options at this point and it saddens me to think that I'm gonna have even more stress when I'm doing this so that I have less stress.  I can barely get through my day anymore and I'm falling asleep at my desk.  I have a 4 and 6 year old and all my energy is spent at work.  By the time I get home I have nothing left for them.  Right now I just feel utterly defeated by this damn disease!!!

[Jessica7777777]

  God bless your heart..my kids are grown ages 35 and 27 I do have three grandgirls ages 10, 7 and 6 They give me a run for my money..when I keep them overnight and they love to all stay together they do me in..I am worth NOTHING for days..You must be alot younger then me..1st let me tell you a little about myself...My name is Jessica I will be 50 years old Oct 30th and I live in Indiana I'm married will be 35 years in March..and I have papillary necrosisand MSK of course thats Sponge kidneys..the papilary part is because my little filters inside my kidneys died..The sponge kidneys cause kidney stones after stones..the most painful thing I have ever been through..There are days all I can do is go to the bathroom it is a awful thing to live with...I take pain med. I would never make it had I not..some times my urine will test 2+ blood amount..I am sure you can relate to all I am telling you..I worked all my life but on Oct. 14th 2010 I could work no more, I have been on Med. leave for right at a year I filed for S.S. Disabilaity Dec. 7th 2010 right after seeing my Nephrologist I told him I could no longer go on..I had reached my end. You need to be so honest even tho. it will brake your heart to have too..Good luck and please stay in touch..I will try to get on here every day...God Bless You. jess

[bambamm]

I am a lot like you. My daughters are 12 and 5, and I have to depend on my 12 year old to take care of the little one and the house. It makes me feel like a horrible mother - I should be taking care of them, not the other way around. This is a huge responsibility to put on her, but I don't have a choice at this point when I can't function. I usually don't allow her friends over because I'm so exhausted all the time, but I do let her go to friends' houses to spend the night, etc whenever she asks - it gives us both a break and I don't want her to look back on her childhood and resent me for being sick all the time.

The fatigue in itself with this disease is overwhelming, and I will never get used to it. I used to walk 3 miles a day, several days a week and was outside constantly. Now I consider it a victory to have the energy to brush my teeth. I had a desk job too and had to resign this month because I just can't do it anymore. People don't realize the amount of activity that's required even with this position. Yes, you are sitting for much of the day, but (in my case) you are constantly up & down filing papers, running people down, etc. Then there's the mental aspect of it - you can't concentrate on what you are supposed to be doing because of the pain and exhaustion. I would hobble home from work and have to go straight to bed. I couldn't cook dinner, didn't have the energy to help with homework, etc. I quit my job on the 3rd and almost have my disability paperwork done. I am hoping I get approved quickly because this is putting a lot of stress on my husband. My doctors are not very sympathetic to the pain that comes along with this disease, so it's hard for me to get any pain meds and I just have to suffer through it. I pray that a door is opened soon regarding this disease and that we can get some public attention focused on it. God bless you & I pray you find some relief soon.

[Jessica7777777]

  You poor thing..my heart goes out to you as I have been and still am right where you are today..All tho I am no longer working and applied for Social Securaity Disabliaity its very stressful on top of a horriable painful life..I am blessed my Dr. understands the pain that goes along with MSK and I see a pain management Dr. every Mo. I would never make it thourgh the day without pain med. and I dont know how in the world your are..God must surly be with you each day..I read your blood perssure was up I was told pain cause your blood perssure to shoot sky high..Good luck and please stay in touch...jess

[KidKrisNey]

Sorry guys but I don't get on here every day.  Evenings are full with the kids and my daughter is in karate so I also have to sit through that.  I was in karate with her until 5 days ago.  I finally gave in to this stupid disease and quit...well Grand Master Yi wouldn't let me say "quit" so right now I'm on a leave of absense and he made me promise to remain optomistic.  It really is like a family there and they look out for you.  He said that I could come back if I ever get my meds right and I can manage and he'll modify some things for me.  Do any of you still exercise?  I'm an exercise junkie and I feel like such a slug anymore.  I have no energy to do anything and even when I do I wind up in so much pain that I am a waste for days or I wind up peeing blood for several days after.  I made it to my orange belt in 8 months time and then had to quit cause of this stupid crap.  
I do have to say that in the end I have heard horror stories about people suffering for years before they were diagnosed and I have to admit that I had a fantastic urologist that picked up on this in less than 6 months.  I'm just now going to see a nephrologist next week for the first time because he said that things have just progressed way too fast and there is nothing else he can really do to help me at this point, but had it not been for him who knows where I'd be right now.  I'm happy to have an answer and an actual diagnosis, but so angry at the lack of treatment options, resources, public awareness, medical community awareness, all of it.  I mention MSK to people and it's like I'm speaking a foreign language.  No one, including doctors and hospital staff, most of the time have ever heard of it.  It is very frustrating to say the least!!!  The pain is frustrating and the fatigue is unbearable!  Right now, I think my husband is starting to resent me because I just can't keep up or do the things around the house like I used to and he is doing his part and trying to keep up with my end of things.  Maybe, he's not and maybe I'm just being overly sensitive to everything since this is all new to me, but right now I'm just tired and way too many changes are happening in my life and bottom line...I don't like it and I just feel way too young for all this!  I'm not 70...I'm 33!!!

[KidKrisNey]

Sorry, for all the whining...I'm having a bad day!  LOL!  I'm on day 6 of this chronic, low grade fever that hits mid day every day for about 2-4 hours then disappears...anyone else getting this?

[ChitChatNine]

Sorry you are in such pain .. and WELCOME!

C~

[KidKrisNey]

Today is my last day until January...temp disability it is!  

[taelamael]

I'm actually in the process of filing myself here in Arkansas. Luckily I was diagnosed at 22 and the laws with disability state you have to have 4 work credits towards SS in order to be eligible to draw on SS disability if your under the age of 24 ( I'm 24 now ) after 24 it's SIGNIFICANTLY higher. I have a lawyer and everything is being processed but from my understanding, especially with this disease because its not specifically stated in the disability act under kidney disease, its a case by case basis. As you know cases of MSK vary in severity from patient to patient some being worse than others. My case is one of the worse they have seen (as told by several doctors) I was originally diagnosed with PKD because of the amount of cysts, locations, and severity but it ended up coming back MSK. So it really depends on a lot of factors 1) age 2) work credits for eligibility 3) severity of your situation 4) how severely your ability to work is effected by this disorder. It's a good outline for just about anyone with any disease but these are the factors I've been told. Also i hear most patients dont receive it until after they've been put infront of a judge which takes 1-2 years. I understand you'll receive backpay for such but its still a lengthy process. If you don't qualify for SS disability I'd look into SSI. SSI is more situational on ur financial situation i hear its often much easier to obtain than disability. If I have any further information I'll add it later =)