Disability? Do we ever get better?

[Amanda0220]

I just have a general question...I know a lot of us are suffering and having a lot of issues and I know I am not alone in that.  Has anyone tried to get disability or gotten it?   Is it possible to get better with this disease?  I feel like I take 1 step forward and three steps backwards.  Beginning to feel a little better physically and now I have nodules.  
Thanks for any replies. Amanda

[Mellowscout]

I have thought about getting disability...the main reason I haven't is that the disability will pay me less than the part-time job I have now.  And I enjoy having some reason to get out of the house! lol.  I don't have a real reason to do that now, but I encourage any one to at least try if they need it.  If you can't work, then you can't work.

Also, I'm not sure exactly what disease you have...hyper?  Maybe hypo?  I have hyper, did RAI on 08/28 and am already feeling improved.  I don't look at it as "getting better," but more of "becoming more manageable."  The truth is, there are going to be good days and there are going to be bad days.  But nothing lasts forever, not even pain and suffering.

Mellowscout...best of luck.

[Barb135]

I haven't heard of anyone trying to get disability for thyroid issues, but it's an interesting concept as I know there are plenty of people who are so under treated that they can't work.  I would think it would be kind of hard though as thyroid issues are generally considered to "treatable" and with the attitude of most people that "you are on med now, you have to get better" --- it might be hard to find those that are sympathetic enough.  

Mellowscout -- I love your thoughts on "becoming more manageable" --- I happen to be hypO/Hashi, which is the opposite end of the scale from you, but the concept remains the same and it seems to be all about "management" and "control".  

[stella5349]

I do know of one member here a while ago that did get disability. He was not well at all and had to go on it to survive.

I tossed it around myself a while back - never applied. But with my job now I do feel if I get laid off - I amy attempt trying.

My husband and I just talked about it last night as a matter of fact. I do feel better - I was so ill back inthe day - but I don't preform as I did - nor to I think I ever will. Am I disability qualifable? not sure.

[stella5349]

I think I jsut need a new job  LOL

[dawnangela]

Lol i was dx in june , couldn't keep up with my job for now have taken off the rest of the yr to try and get back a bit of my old self..but with my hubbie working im not sure if i would qualify for any thing..i was in aged care..well still am sort of, they said i can go back:)

[dawnangela]

Will see how i feel nxt yr..health wise..but if anyone can get it as they cant work with being ill go for it..we paid our taxes too...Dawn

[dani2776]

My best friend who also has hypothyroid IS on disabilty.  She has been on it for about 6 months now.  Her factor was that her job was causing too much stress which in turn caused MAJOR thyroid symptoms.  She has since resigned from her job, been placed on disbaility from her doctor's suggestion and is back in school to become a massage therapist.  She has urged me to apply as well, but I don't think I am quite ready for that yet ;-)

[dawnangela]

Mmm im not sure how it works here...im not thinking with our government it would be worth the fight for it...As my hubby works it for sure wouldn't be much..But i certainly agree if you are entitled go for it:)

[stella5349]

I can certainly say - my job take a heavy toll on me all day - everyday. It may be something to look into.

[Marpo1]

I am on disability.  I was a photographer and traveled and trained people in two states.  I did a lot of driving and walking.  I loved my job but it could be stressful with the people I had to work with.

I had to quit my job because i had a hard time walking and would fall because of weakness and joint pain.  My doctor made me stop driving because Of my TED getting so bad.  First the double vision then prisim and bulgy eyes.  Well all that goes with TED. I had Graves' since 2000 and TED since 2004.  But it wasn't until 2007 that I applied for disability.  My doctor over those years did not think I was sick enough.  Well I applied and they found I was so bad I got my disability in six months.

You may be sicker then you or your doctor thinks you are.  I was checked by the Social Security doctors and they rated me.  By the way I did not use a lawyer.  I gave a speech on this for my Graves' Support group on what I did.  If you email me I will gladly send my information to you.  ***@****

[Smilerdeb]

Do we get better?
The only answer I can give you to that question is......
You never get back the 100% of the old 'you ' but you can get back 99% which is good enough for me.
You will always have to monitor your sysmptoms and levels etc for the rest of your life but yes..it is manageable and yes, you may have the odd cr@ppy day but in all reality......I have heard it is hard to get disability in the states (not as hard here).
If you had asked me that prior to RAI & TT, I wouldve said ...No you dont get better but I was totally wrong.

You have to be determined to not give in, not give up because yes...there is light at the end of that tunnel.
I always used to say...'the lights on here but no-ones home.'

Now I say....the lights on here but whether I want to answer the door is up to me'.

Never lose sight of who you are.
Thyroid issues do make you stronger and when times come that you feel 'low' ...accept those times for what they are as tomorrow is another day....a day better than the day before.

Debs x

[Nelly57]

I just joined this group this morning.  I have been reading some past posts and it feels so good to not feel so alone anymore.  I am hypo and just had a thyroid uptake scan in which they found a goiter/nodule.  They just want me to stay on meds for right now and keep an eye on it.  I had to be off my meds for a month prior to the scan (I was taking 100 mcg. a day) and that has been horrible.  I've now been back on them for 3 weeks and I still feel horrible.  Almost constant body aches and extreme fatigue.  My doctor keeps telling me that it will take at least 6 weeks for the meds to get back into my system and for these symptoms to resolve.  Has anyone else had any experience with this?  I am miserable and having a horrible time working everyday.  I work in a very busy elementary school and right now it feels like it's killing me.  Is there really hope that I will feel better as soon as my meds get back into my system?

[stella5349]

Hi Nelly - I can totally relate to your job. I am a secretary at a charter K-8 school and definately know how you feel.

I love working with the kids - but as you know - the politics of working at a school is not always "kid" friendly.

I worked at the public school here for 10 years while my thyroid ordeal kicked up. My last year there was absolute he// and eventually I had to leave. I can not say it was all me leaving either. I think they saw the decrease on ability I had - being so ill and my un-nervy irratible attitude I was getting because of the disease.. so I will admit - it was a 50/50 thing at that time.

Ironically - I got even sicker after I left  and spent 4 years - basically on a couch - in and out of emergency rooms. I thought I was going to die and almost did twice.

I figured out why I was so ill and have corrected it. It took 2 years for me to get to the point where I feel good now -. I went back to secretarial what I was doing at this charter school now for 3 years. Even though I feel well - I cannot preform in this enviroment as I did. I don't know if it is the stress there with administration - or me - or both. I just know I can't continue this way for too much longer.

[Nelly57]

Hi Stella,

I've only been in this particular school for a little over a year and I am at times overwhelmed.  I was at an Adult Education school for 14 years and loved it but it was an hour commute each way and with my health issues that was just getting the best of me.  I left in June of 2008 and took this job at a VERY busy elementary school.  Last year was rough and this year due to budget cuts they have added even more duties to my already very busy day.  At my other school I was a school financial accountant and all I did was bookeeping duties.  Here I am the bookkeeper, asst. registrar, records clerk, key keeper (as they call it), discipline clerk and help out in the front office as needed.  Too many hats!!!  Add to that the thyroid issues and it's not very much fun at all.  Hopefully I'll get the thyroid issues under control soon and maybe then I can handle this crazy, busy job much better.  If not, I told my hubby I might be looking at early retirement.  :-)

[peggy64]

I have not been able to work for over a year now. I have had so many various symptoms because of this disease and because of the way it was treated when first diagnosed. I had thought of applying for disability, but I want to get back to where I can work. I am not yet ready to say this is as good a recovery as I am going to make.

I realize I may not be realistic, but I want to get well enough to get back to the land of the living. And with the fact that I have as of yet to find a dr knowledgeable enough to treat this, it is just taking so long. Plus, it took 19 years to get a diagnosis which really has taken a toll on all body systems.

[LazyMoose]

Interesting subject. Thyroid can really limit your work if you suffer from symptoms, it $ucks!

For ten years on only t4 I had a lot of muscle pain. I have worked in a lot of research and development labs which can mean a lot of standing on concrete - hard even without thyroid issues. If you are not in the lab you are doing computer stuff and the invention of the computer mouse was evil for anyone with thyroid related carpel tunnel! Slowly getting better with T3, but may never be 100% from scar tissue buildup.

How many of you dosed off in meetings? Very embarrassing not to mention it can put you on the lay off list.

[stella5349]

My energy level is at the top again - so I no longer dose off. I am up at 4:am the latest and now have to work until 6pm - I really don't feel bad with that. Last year if you would of asked and this situation was then - I would have not been able to do this at all.

I too am only at this school for less than 3 years. The first year I was there I was miserable and that was not a plus for me in the "proving myself worthy" department. I am having a hard time redeeming myself as an educational support person is.

Anyone in elementary school/middle school secretarial support would definately understand the many "hats" you must wear all day long.


The key word here for me is "redeeming" I don't think I will be looked at as someone who just was ill and is better now. and in their defense - how could they? They didn't know me prior to thyroid disease.

I feel like a mental failure there. I know I could be what they need and have that ability now to do that now that I am over the hump of almost dying for Pete's sake. But I believe my furture is over there and they will look at me as incompentent. Truthfully, I pray they word lay me off so I can get over the embarrassment from being so ill and not at my best potential a while back. SO I can sort out the bullcrap and still be able to keep my home - financially.  They would be doing me the favor of cutting me loose - so I could finish the job of getting back to life again - health wise and simply move on.

Again - hard to swollow for who I was - prior to this .....

so I am thinking - will it be this way no matter where I go? is it worth the stress of trying to be something I may not be again? What if I fall again? Will I be on this idiotic freight train - trying to keep up before I get run over again?

My values are different now, they have to be. I can't ignore myself and my lessened abilities from becoming sick has dealt me. Stress overburdens me. I don't "get off" proving myself anymore.  The strength of proving myself is not there as it was. I don't want to take on more than I can chew anymore.

In  my youth years - OH the jobs I did. I was a mechanic - ASC certified Dodge- roofer - Harley Davidson account controller  - furnace repair worker with my father. I was a floral designer - hair stylist - caterer- nail tech. ( all with no schooling or certificates) and a Mom - wife and all the jobs associated with that. and did an awesome job at managing all the above - at least I feel I did.

Then........ thyroid.... blew all that into dust.

Now one job - this - is difficult... I can't manage the enviroment. The idle gossip that once could be overlooked is in full vocus at times for me and I can rage completely out of control because of how senseless it all is in real life. Typing is challenging for me LOL - like I am missing a beat either in my head's words - or my fingers can't move fast enough anymore. I went from a 50wpm to about a 35wpm

WTH??

The day to day jobs of being there for my highschooler son ( senior year) and being a full time working woman - is challenging. It's like this disease is now making me chose - I can no longer do it all.

Is this disability worthy? I guess it's up to the way you approach your doctor - how she sees the situation and decision on her individual level to write the referral or not. It's not up to you on any level anymore. It's all up to the way you come off I suppose.

Hard to prove this statue with "normal" labs though I am sure. and we all know what - normal can be.

[Smilerdeb]

Normal doesnt exist in my vocabulary...it never has.
It is hard being a Mom and wife and worker.
I dont think I couldve gone back to work if I had to come home, cook dinner, wash, look after kids, be a dutiful wife.
I guess I am one of the lucky ones who met someone and was diagnosed 3 months later with Graves so he understands who I am and where I am or am not at.
Sometimes he 'forgets' I have Graves ....just as we all do in lapses of times.
But I am fortunate enough to be able to work part-time and dont think fulltime is an option for me anymore.
I used to work 17 hour days but those days are long gone.
I worked fulltime previously after RAI and TT and found that I wasnt working fulltime because I wanted too....I too was trying to prove to myself that I wasnt someone who would fail.

I honestly dont believe I have failed now, I believe my expectations were too high.
So like Stella said...I work because I want too but now know my limits.
I know what and how much my body and mind can do now without feeling useless.
But I dont have kids to go home too so that does make it easier on me.
I can go home and if the dishes dont get done that night, I can do them the next night.
If I dont want to vaccum, I can leave it until I do.
But at the moment in the process of moving home and between jobs but still studying distance online (a years course to do at my own pace).
The whole secret to life after Graves or Hashi's is to know your limits.
Be kind to yourself and 'acceptance' is the key.
Thats the hardest thing of all....'acceptance'.
Acceptance that you will never be the 100% you was but you may find the 99% ...which in my books is good enough for me considering before RAI & TT.......I was 0%.
Yes I get tired, yes I get sh*tty, Yes I find things hard sometimes.
But in all honesty...I refuse to live a life like a vegetable.
I did that for too many years.
And if it means pushing myself each time to the limit I know I can cope with...then thats what I do.

I may go through many jobs, I may stick out one job and that is why I did an online distance course.......to take away the feeling of 'failure.
Anyone who has Graves or Hashi's will never 'fail' in my eyes because if we fail, we wouldnt be here looking for answers.
We wouldnt be pro-active in our recovery.
We wouldve 'given up' when we were diagnosed.

The only advice I can give to people here is...be kind to yourself and 'accept ' who you are and your limits.

Life is too short to wonder 'what if'.


SUCCESS IS NOT FINAL
FAILURE IS NOT FATAL
ITS THE COURAGE TO CONTINUE THAT COUNTS.

[Nelly57]

Reading all of your posts is helping me so much.  I have other friends with thyroid issues but sometimes I still felt alone in my struggles.  I'm so glad I found this forum, it's helping with that a lot.  Also, I am finding so much good information here that I never knew before.  

I have an appointment scheduled next month with a surgeon here in town who also has an integrative medicine practice.  I called and talked with his staff and they said he truly understands and knows how to treat thyroid issues.  I am still waiting on the endo in Tallahassee to decide if he wants to see me or not so I figured I would check out this guy in the meantime.  I always prefer the natural approach to anything and if this guy can help me I will be thrilled.  

I will say the last two days have been a bit better.  I am into the 4th week of being back on my Levo so hopefully my levels are coming back up to normal now.  I had one small episode of body/muscle aches later yesterday afternoon but other than that I haven't felt too horrible.  Still not much energy of course but I've been like that for 2 1/2 years now.  

[peggy64]

Sitting here reading all these posts, makes me want to just squall. To have someone else know what it is like helps so much in making me not feel like I have just gone off the deep end .

I have such a hard time putting words down like the above posts, and they are so therapeutic to me. I have not been able to explain how this disease makes me feel.My family has a hard time dealing with this. I used to be the one that handled all the details of household and family living, plus work up to 60 hours a week, and I just have not been able to for such a long time now. I still try to handle things, and feel bad because I am not able to, which impedes the healing process. Its really something, because I feel guilty when I am not handling the household like I should, but then I feel terrible physically when I do try to keep up the duties, so its a catch 22.

I was bedbound during my sons senior year this past year, and that really devastated me. And does even when I think about it today. I think sometimes the family just tries to steer clear and I just deal with it the best I can, which is not so good some days. I don't have the raging and anger, I just shut down and can't say anything regardless of what is going on.  It gets very lonely because they don't know what to do, and being around others is scary because you don't know how you are coming across, and then my memory is just plain shot,  so I am wondering "did I act stupid, did I say something I shouldn't have?", among other thoughts.

So because of that, I am so thankful to be able to come here read everyones posts and think "yep, I understand that, I know exactly what they mean, I feel that way myself."

I have so many family members that have this disease, and they have not had the horrible time that I have had. Albeit, I did have it 19 years before it was ever diagnosed, and then had adrenal exhaustion after beginning armour thyroid therapy.

Trying to stay positive and maintain some joy is very hard. I believe in the Lord Jesus Christ, and I  have a  hard time understanding why He does not heal me, but I try to remember that His ways are not my ways, and I see only today, while He sees the whole  picture. So with that I just try to keep trusting and leaning on Him. But I must admit, it gets very hard at times.

[stella5349]

Peg -  You know I am here - you can reach me anytime.

[Smilerdeb]

If its any consolation...I am sitting here at 1.05pm in my pj's lol :)

[Amanda0220]

I just wanted to say that I really am grateful for this site and being able to share, it really does make a difference.  I ask about the disability since I lost my job the very day I was diagnosed with Hashimoto's - I knew I had low thyroid, but not Hashimoto's.  My endocrinologist told me I was undermedicated for over 8 months and threw my body not to mention my mind into havoc. I do not know if any of the rest of you have any kind of mental issues with this - like brain fog, memory loss, word loss, anxiety, panic attacks.....this aside from the extreme fatigue is the most scary for me. I am trying to find a job before things get too bad financially. Again, thank you all for your support!!

[dawnangela]

Oh yes i can sure relate to that...I was going back and forth to doctors for 25 yrs with those symptoms..Im now 47 and only just dx in June Hashi/Hypo...By that time my whole body was down to a snails pace, I gained 16 kgs on my small frame..i stopped work as i could not care for my clients anymore ( i was in aged care ) I am slowly improving on treatment, I am hoping im able to look for a job not as strenuous nxt year..It is hard on one wage, and i was so angry that it took so long to dx me and my health had to get so bad by incompetent doctors..Dawn