I applied for disability and got it in 5 months but that is very unusual. It depends on what your disability is, your age, how complete your medical records arepertaining to your disability and how complete your answers are to all the questions on the application. You must answer all the questions do not leave any unanswered if they do not pertain to you explain why. I made sure my Drs had all my records up to date with all info needed. Just so you know.
ggrhea said:
Has anyone tried to sign up for disability and if so how hard is it yo get?
Hi, not been on here for a while. I’m currently waiting to see if I can claim disability.I was diagnosed in March of this year although suffered with symptoms for quite a while. I’m still waiting to go on hydroxy chloroquine from the rheumatologist who I see again in in August. I’m not getting much support from my GP and I’ve had to fight for the medication prescribed by my optician and the painkiller prescribed from the rheumatologist. My GP said I can ask him questions related to my illness only if I’ve not asked the question before. As the disability centre seek advise and update from my GP I’m not holding out much hope on my claim.
ggrhea, the site Jules presented will be helpful. My experience applying for disability turned out to be positive; just realized about the only positive thing about having these conditions. In my case, there was no consideration of spouse's income.
I provided them with copies of visits, tests over an inch thickness of paper. suggest you try to show all you can.
Agree, I had a lot of problems but I think the depression was considered important, as well as the physical issues.
hi, Kquixtar. I would suggest that you take care of the symptoms or what ever medical emergency you may have but in between invite people over for snacks, a movie or just to have a nice meal in a restaurant. Try to avoid sitting in your house waiting for flareups or to ponder on your situation. Also, very important, friends and family get tired of hearing us complain about our condition. If you get a call or a visit, talk about simple things, not about Sjogrens. I have a friend with Fibromalgia who complains constantly and everyone avoids calling her. Its so sad. The reality is people want to be around you if you are positive. No matter what, be positive. It will help you and your family and friends. Do not isolate yourself from the world. Its difficult, but it will help you mentally and physically. The cold air condition and heaters are very drying, that is why you need to stay a bit longer on the outside. I use humidifiers around the house. It has helped a lot, mostly with rashes and my eyes.
Hi Kquixtar, I was having a lot of fatigue and random joint pain. After 16yrs. of saying no to med. I finally gave in and tried plaquenil. For me this has been a great help. It took away most all fatigue & joint pain. Still have itching, rashes, sore mouth to name a few but I have energy to do the things I love. Celebrate life!
I've been following this thread. I find listening to music takes me out of my feelings of aloneness. Many songs reminds me to "keep on truckin'."
I am a marital artist, retired now because of the stiffness and joint pain of Sjogren's. I am able to do a modified Tai Chi routine, seated. That helps me deal with my loss of the martial arts, which was so much a part of my life. The stretches I learned as a martial artist, helps lessen the joint pain.
I take hydroxycholoroquine. I was a person who chose meditation over medication. When I started hydroxycholoroquine, I, once again, enjoy living. I've changed my thinking -- meditation with the right medication, good combination.
I've been following this thread. I find listening to music takes me out of my feelings of aloneness. Many songs reminds me to "keep on truckin'."
I am a marital artist, retired now because of the stiffness and joint pain of Sjogren's. I am able to do a modified Tai Chi routine, seated. That helps me deal with my loss of the martial arts, which was so much a part of my life. The stretches I learned as a martial artist, helps lessen the joint pain.
I take hydroxycholoroquine. I was a person who chose meditation over medication. When I started hydroxycholoroquine, I, once again, enjoy living. I've changed my thinking -- meditation with the right medication, good combination.
thank you for sharing this. no martial art expert, but I sure miss my Tai Chi, I'll search for a one done sitting down
Also, I started Plaquenil April no help yet, how long does it take? im going to play music now, thanks
I can't give you a time frame when plaquenil will start to help you. For me, as hydroxychloroquine slowly relieved my joint pain and fatigue, I began to test my physical limits. I've gone from being very physically active to doing things sitting. That's how I continue to still "be able".
H, was just wondering about the plaquenil and how long it takes to start helping. Can someone please tell me what doses they started with I’m hoping that I am not on the correct dose for me. I’ve been on it for 4mos. now and notice nothing. I know everyone is different but I hear only good things about it but for me so far no help at all.
I asked my doc the same thing I take 200mg 2 times a day and she said that is then most you can get. She said you may not notice much change but if you stop taking it you would notice how bad you would get without it. So it helps you from getting worse. I am getting plugs put in my tear ducts next time I go to opthamologist because nothing is working for dry eyes. I also have really dry mouth and trouble swallowing and that is how it has been since the begining for me. But everyone is different thats why the meds have worked for some.
I had the same discussion with my doc. It can easily take a few months for plaquenil to start kicking in. But, it is a disease modifier so it can slow the progression….being off it can be a shocker. I started out with 200mgs twice a day. Once the fatigue had stabilized he dropped me down to once a day. I've been on that for about a year and its been just fine, though he checks in often to make sure I'm still doing ok on the lower dose.
Isolation is the worst side-effect from this misunderstood illness. I never was really athletic, but stayed very busy with artistist endeavors that I enjoyed such as decorating, etc. Nothing was too big for me to tackle, but now I don't start projects because I know I won't have the energy to complete them. Yes, & like others posts I've read, your friends seem to disappear. Need to find things to stay busy & enthused, but with Sjogren's, don't know what that would be. It's refreshing to read that feeling lonely is a common denominator, but know it's horrible for everyone it effects.
Isolation really sucks. I had friends I would go dancing with and I would also got to car shows, and other events and now the only thing I do is go play cards with some women friends who are in their 80's I am 64. It is fun and it does get me out but allmy other friends are gone. I have none my age anymore because I can't do anything and the only thing I have to talk about are my health issues and I don't want to talk about all that. I can't walk very far or do much I get so tired. My muscles are gone. I use to dance 4 nights a week and had good muscle tone but not now. I have balance problems so I have fallen several times. I keep busy playing hidden object games and bingo so my brain doesn't give out on me too. I also look for resources for low income seniors and disabled people in my area that need help. It gives me a purpose but there isn't always many resources. Having a purpose keeps you from getting depressed.
I know each of our journey's are different but if it helps any, over the past couple years I have worked my way back to some of the activities that I used to do (including jiu jitsu). It took time, patience and a good medical team who "fixed" my balance issues and helped my overall well being. Once that was done, I had to get it through my head that I had to build back up in very small increments. It was easy to over do it in the beginning and set myself back. There is hope… and we definitely have to work through our new norms as far as coming to terms with what we can't do and finding things to feel fulfilled. This site has gone a long way towards keeping my spirits up so I can do that.
Thanks for the encouragement. I have studied a Chinese martial since 1979 and due to my then 'un-diagnosed' Sjorgren's disease my practice of this martial slowly faded away until I was not practicing at all. I am at a point to where I am practicing alone at home (i.e. forms and lessons), but at least I am doing that. The issues from this disease are still not under control and there are days that defeat rears it's ugly head, but I keep doing what I can in all areas of my life. Adjustments and more adjustments are a way of life for me (and all of us) in dealing with these auto-immune diseases we share in common. Be well.
I hear ya…the constant "new norm". It can be discouraging at times. I think the worst for me is when people start telling me, "You have to think positive. You can't own your disease because what you put into the universe is what you get back". Those are people that have no clue what a struggle the balance is to move on with life while dealing with this ever changing issue.
Here I thought I was the only one"outing to" visiting doctors. Pretty blah. also want to ask how long it took to get firm diagnosis. I have had SS for years, diagnosed by dry eyes. seeing a Rheumy, but seems like they can't make a firms statement as whether I have RA or Lupus, or JUST Sjogren's. how did they finally diagnose the RA. I too have given up my former life.
anyone have comments on red blood vessels, vasculitis? thank yhou
It took many years for me to get a diagnosis but mostly because i test negative normally for RA factors. The first rheumy declared that I was "Fine" and stopped looking. It wasn't till my eye doc set me up to test directly for SS that they were able to diagnose. Keep in mind RA, Lupus and SS are very closely related genetically so it can be a little tricky to tease out. Glad they are still looking for an answer.