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Medullary Sponge Kidney Disease (MSK) Community
513 Members
Avatar universal

Work Issues/Disability

I have to make this short because I dont have much time but I wanted to know if anyone else suffering from the MSK has successfully been able to leave work on disability. I have been getting persecuted so bad at work for missing time, I sit as far away from the restroom as one can get, and it is almost turing into a form of harassment. I am beyond stressed out, I feel horrible, I still dont have a doctor that believes my pain is real, and on top of it all I am trying to raise 2 young sons. I am afraid I am going to loose my job so I would like to get one step ahead of the pace and try to use some of my disability for a while. I am seriously on the verge of a SERIOUS nervous breakdown from all of this. I feel like I can not keep going on. Please let me know your experience or any suggestions you may have. I have an apt today with my family care doc at 2:30pm (as he is the only one who cares) so I am probably going to really let loose and start sobbing. Thank you so much. Now that I am able to access this site from my work computer I should be able to post more often and get closer with you all. :)
24 Responses
Avatar universal
Anyone?
489228 tn?1291535054
Sorry can't go online during the day only at night.  I am about to leave
but did answer your pm. I do not know of anyone that has been successful
in getting SS yet, for the MSK stuff alone.  I know that getting disability is a battle
for anyone and especially since MSK is not on their list.  I have sent
you some resources.  I will send you more info. when I get home if you can e-mail
me with your e-mail addy.

I do understand your pain and problems. I hear you story over and over.  Again, I would tell anyone to get their Vit D checked first and see if that works.  I know one on this board was able to get her life back alone with that.  For me it has helped but I am more complicated, and my levels are now almost normal.  All but one os us that was checked have been low, I was very low.  30 is normal I was a 14!

Look through the healthpages for more articles on the pain and treatment protocols.

Hope that helps some!
Shelly
168348 tn?1379360675
COMMUNITY LEADER
I thought all my symptoms and pain were from my synthroid thyroid levels being off but turned out I, too, had severe Vit D defficiency and now it's so much better in all symtpoms including feeling down!

C~
Avatar universal
I am sorry to hear how you are feeling both physically and mentally.  I have also felt this way to many times to count.  I have had to miss work so much and people do not want to understand let alone try to.  
I cannot offer you answer to your questions.  
I do want you to know that you are not alone and I wish you strength and love.  
Pauline
Avatar universal
I feel your pain!!  i live in hell everyday a mother to three children and suffer with this disease beyond belief!!  people think you exagerate all the time why in hell would anyone in their right mind want to be sick all the time!!  MSK is my life so many surgeries to count and next step transplant!!  listen try binder and binder they are the best!!  You have to go through a lot of hell but if you stick it out you  could win in the end!!!  Your doctor's have to  agree with you they need to back you up without them backing you there is no case!!!  Make an appt with your doctor and explain that you can not function at work or at home!!  your going to lose your job if you keep missing time which will not look good if you lose your job and then try and get another!!  If you need to talk I am here I know how you feel!!  Melissa
Avatar universal
YES YES YES... You can get SSD for MSK. If you have true MSK you are born with it. Get all you records you must have bben through many surgeries... or SS will even get them for you. SS does recognize MSK. Cara
Avatar universal
SSD really does reconginze MSK as a disability. Listen here is my thing. I work for the a government subcontractor our here in Las Vegas Nevada. We support the Nevada Test Site for the DOE. Upon being hired I had to undergo a physical and they had to list what job qualifications I had to follow, ie, lifting 10 lbs, hearing, prolonged use of a keyboard. According to my company directive, prolonged use of a keyboard is 40 mins or more. The doctor in my occupational medicine department said I could probably argue that fact and when, as I ALWAYS have a kidney infection, blood in urine and am passing gravel like stones, that is daily, that is not even when I have a big stone coming out like today! It is so hard. I am miserable. I did finally get into a pain specialist but even after printing numerous documents from here they still kind of raise the eyebrow at me. I just dont know how long I can continue this, raising 2 ACTIVE boys, working 40 hours a week, and be a total *B* because I cant control that when I am in pain. I am also finding the lortabs do not work like they used to but I can not take anything in the "oxy" family. This is getting overwhelmed and now I have fallen into a SEVERE depression from this. Anyways thank you for listening.
1 Comments
Have you tried Chanca Piedra? I use it and it has broken up two 7mm stones. I had a little pain passing them but now the sever kidney stone pain I have experinced before. I take it daily now since being diagnosed with MSK
168348 tn?1379360675
COMMUNITY LEADER
Please know we are here for you .............pain takes its toll ... feel free, too, to say hi to the CL's and Pain Mgmt community .. tell them I sent you over .... they are fantastic over there, too .... hang in there.  It's really really hard sometimes.

C~
Avatar universal
I know your pain well. I live in NJ and I applied and was approved. You will need lots of documentation but MSK is a serious disease. If you are under 21 in NJ you can qualify if not married, as they say it is a disease you are born with. I did get checks from my fathers SS but than married.
There is NO WAY you can work with this disease unless you wanna bounce job to job until they get tired of you. Best Luck............... Cara
Avatar universal
Actully it does look good if you go from job to job. It's like you really tried but could not function... it's inconsistinity. If you keep at 1 job than they will say you worked there fine. If you are bouncing they see a problem. My doc. was the one who advised me to apply. Cara
489228 tn?1291535054
I am glad to hear that you were able to get disability based on your MSK.  My understanding was that it is not on the list, so as you mention you have to prove it.
I could qualify based on several issues, BUT because I am married and a stay at home
mom we do not fall into the level where I can qualify.  I may reapply since the economy has hit our business really hard.

One thing that might help prove the SS case is using the online pain diary.  Relief insite has a smaller one connected here through medhelp, however they offer their full version not free on their website and you can print out graphs and charts showing how the MSK effects your daily life and your daily pain levels too!

Please let us know how it works out, I can not imagine working 40+ a week, there is no way I could do it though I think I am going to either go back to school or work part time somewhere, just hope I can make it!!

Shelly
Avatar universal
Yes, I am on Disability, It took me several years to get approved, but the best thing to do is go to the DR allot get lots of records together and a must is to get a SOCIAL SECUTIRY CONSULTANT or a Lawyer to help you.
Without this, you probably won't get approved.
Avatar universal
Do you have to be out of work to get approved?
Avatar universal
You are limited to the hours you can work when on disability. I was on it for a year due only to MSK. But I went back to work when I miraculously got better after my thyroid was removed (still dont know if there is a corolation).
Avatar universal
Sorry, correlation that is- forgot spell check...
168348 tn?1379360675
COMMUNITY LEADER
Well, half my thyroid is out and I've passed about 3 stones and tons of gravel or flakes .. boo hoo ... wish my MSK got better :(  .. all kiding aside, sorry you had your thyroid out -- do you mind me asking what condition you had?  I had 2 nodules that were biopsied atypical.  Had a partial and the other half never decided to work again but I am doing fine on Synthroid.

You should stop by our Thyroid Community ... I'm a Community Leader over there and have been a member there, too, for 3 yrs :)

C~
Avatar universal
I have MSK with chronic kidney stone formation. I have no insurance a 22mm stone 19mm and 18mm. My tops of my kidneys are calcified and I can;t afford lithotrpsy for relief. This is a abscure condition everyone suffers in silence. People talk about passing a stone but when you pass stones daily and the infection won't go away ( I'm on my 6th antibiotic). How can you hold a job. My head aches from the damn painpills and I find little to no support I'm also on the verge of something. I was told I have hypercalcimiua I'm sur that doesn't help/ Four hospitalizations in 3 months 11 days in the ICU and why can't we get disability I've Anyone who can answer the SSI information
please!!  WE NEED HELP...
2 Comments
Have you tried Chanca Piedra? I use it and it has broken up two 7mm stones. I had a little pain passing them but now the sever kidney stone pain I have experinced before. I take it daily now since being diagnosed with MSK
I mean not the sever pain I had before
Avatar universal
Today I am feeling MISERABLE. Left side of back has been killing me for about 3 days, terrible burning when I pee, and now there is A LOT OF BLOOD! I dont know if I should go to the ER and get some IV pain meds because the lortab right now is not taking the edge off and I can not take anything from the "oxy" family as I am allergic. Oh yea, did I mention I am suffering all this FROM WORK TODAY.

UGHHHH sometimes I just want to crawl in a hole and never come out
Avatar universal
My story is so like yours, wow. It's incredible because people think we are crazy and do not believe the pain, that we say we have. Just like you, my PCP, she's the only one that takes my pain seriously. I've probably only worked approximately, 2 months (days spread way out) in the past 7 or 8 months. I believe it should be considered a disability.
Avatar universal
See I am a male and just find out march that I have it and find out that when I was 23 year old I have one kidney I know this is a women website bt I need help because the pain ***** and missing alot work
168348 tn?1379360675
COMMUNITY LEADER
Hi -- the community is open to anyone with MSK or cares for anyone who has it .. men and women alike!
Avatar universal
I have the same issues, msk and IBSd, also migraines, and a messed up shoulder. Im in pain constantly, I had to quit my last job because I faced the same issues at work, I missed a lot and could barely function. I did have a breakdown and just quit. I really cant work anymore, Im sick everyday puking and have diarrhea, the pain is unbearable some days. I have no idea how to get on disability for this or if this is something even recognized by disability. I hope you can and I hope you can find a way to manage the pain, I totally get it. It is hard.I came here looking for the same answers as you and I just wanted to say youre not alone!
1 Comments
I was told my kidneys are designed to produce stones, even if I pass them more will come and I should look into pain management doctor. Painful and unpredictable
Avatar universal
Has anyone here come up with any viable options for income with this condition? I had a steady job history and a fair amount of education from age 16 to 30 was never once unemployed, but as the condition has gotten so much worse the past 3 years, I can barely hold a job for a month before I get fired or have to quit to pre-empt the firing. I got my real estate license thinking that would help because I'm a single mother and have 2 kids I have to care for but I've been on the verge of homelessness this entire past 3 years, having to live with other people in less than desireable conditions just to survive and it's becoming increasingly tough. It's costing me so much just to keep my association dues up and without the energy to prospect constantly, it's impossible to find enough clients to even cover the dues. I took a part time job in the office that I was promised would be flexible but with getting stuck in bed for several days straight every other week from the infections and constant trips into the ER and the Dr., I'm facing bad attitudes and discrimination yet again. I understand a companies need to have people in the office, but how are we supposed to survive and take care of our children with this? I've thought of going back to school for web design so I could work from home but then I usually face discriminatory treatment by instructors who don't understand why you can't get assignments in on time when you're sick when I try to take classes now, and it's very expensive which I can't afford. And I'm concerned about timelines for that occupation as well if I get sick and can't get things done on time. I've been on my own since I was 15 and have practically no family to help. I'm even wearing clothes that are 3 sizes too small and falling apart because I haven't been able to afford those since I first lost my job and got really sick. It feels like things are just closing in on me and I have no idea where to turn. I have spoken with tons of places to look for support, but when the Dr.s hardly even know what to do for you, it's impossible to find any viable options. Any suggestions would be greatly appreciated!
168348 tn?1379360675
COMMUNITY LEADER
From what I've heard from patients it's really hard to be approved and rarely do most get approved the first try.  I've heard many appeal 2X+ and sometimes finally get approved. There's no doubt about how stressful it is when not feeling well day in and out.  C~
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