Help, Disability Question.

[Christrd]

Quick back story.
I was diagnosed with WG back in october of 09. I was scared and confused but I didnt let it bring me down. So I went back to work right away. I got married and moved from LA to Omaha in 2010. Here, I found work in Omaha right away and a Dr to follow up with the WG. Everything was going fine untill January of this year. I began to feel tired and fatuige for no reason. I had shortness of breath and my legs felt like they were on fire. It had gotten so bad, thet for the month of July, I only worked for 6 days. I had filed for FMLA, so my employer was ok with me missing work. One morning I felt like a Train had hit and I could not stand on my own two feet. So I made the decision to not return to work. An old coworker asked why didn't I apply for Disability? She said that one of her relatives has a similar case and was approved for disability and got Medicare. The Medicare would really help me out since I now have no medical insurance. So I filled out the Questionaire from the Disability website and sure enough, I had an Interview the following week. I was adviced that they would gather the remaining medical info that was needed and I would have a responce by the end of August. I recived a letter August 10th from them. It explained that my condition did not qualify me for disability. Today I had my 3 month appointment with my Dr. I explained to him that I had applyed for disability. He said it would be very hard to get disability and I may not get it....I dont know, somthing about how he said it did not feel right. He later explained that the disability office had requested my medical records. He said that ever since I have been going to his office, I have shown to be ok. I told him that I was not doing ok I needed help.

Long story short,
Can I apply for disability if I have WG? I have an appoinment in two days with an attorney that specializes in disability law. I just dont want to waste my time and his.
If there is any info that would help me out, let me know. Thank you.

Chris.

[Lightwarrior]

Chris,
I am in the process although it is a bit different from your process. Through my job we have a long term disability insurance that I will be going out on soon. I understand that they apply on my behalf for Social Security Disability and then deduct the amount Social Security pays me from what they will pay me. I will try to share any tricks i learn as the process unfolds. I do know that quite a few of the Weggies on this forum already have disability so they can weigh in with more information.

[Christrd]

Lightwarrior, Thanks for the info. I hope it goes well for you.

[Debbie C]

Christrd..I replied to a thread before that before all this I used to work for SS and Workmans Comp attys.I have been on medicaid and collecting SS for 2 years.(Actully starting Sept. 1, I will be automatically switched to Medicare..I just got my card earlier this month.You can definately get help..its sounds like yr Dr. didn't do anything to help you...his comments are probably what got you turned down.If I were u you can file a appeal yourself but u need to do it quickly ,they only give u so much time.Then gather every medical record you can from when u were first diagnosed to now (also find another dr. if he thinks your are doing well !!!) You can call or go down to your local your local SS office or go thru the attys. (they will get a good bit of your money) but go to the appt.they can give you a free consult on your next move. Also go to job and family services ( if thats what is called there) and apply for food stamps,cash assistance,and medicare(for your medical help).If you Google what WG is,print it out and take it with you along with all the records you can get.Hope this helps.

[annekat]

I got disability with no problem... possibly helped by my age of 59 when I applied, plus that I was making so little money at my self-employed business that I was under the limit of income that is considered to be "working". It would seem that if you had to quit work because of Wegs, you should qualify, though maybe a certain amount of time would need to have elapsed since you stopped working. There are so many ins and outs to it that I can't even remember most of them.

I agree with Debra that your doctor doesn't sound like he helped you much..... he said they asked for your records, but did he send them? I never even talked to my doctors about it and don't know how they feel about it, but I assume they sent the records and said at least some helpful things in my favor. I would think that under the system the doc would be required to at least send the records. If you are in too much pain and discomfort to work, I think a disability lawyer should be able to help you and it wouldn't be a waste of time. If he thought it was, he would tell you.

I also agree with Debra that you should probably look for another doctor. Is the current one a Wegs specialist? Not all of us have specialists, but if you can get one or a doc who will consult with one, it would be a good thing. Check the Vasculitis Foundation website for specialists. It sounds like you were doing OK but then had a major flare or extreme worsening of symptoms and they haven't improved. Did your doc do anything about any of that? I can't imagine him thinking you are OK. But sometimes we see our docs for such short visits that how could they really know how we are doing?

Good luck.

[KathyB]

Hi Chris,

I'm going through the process now myself (age 56). The Virginia Retirement System already denied my application but I'm appealing. I haven't heard from SS re my application. My understanding is you have to be out of work (showing no income from work) for a certain period of time. I was told a minimum of a year, but I think it depends on your circumstances because others have have gotten it in a different time frame. I expect to be turned down by SS for now since I only stopped receiving a paycheck as of July 1 when I medically retired. I'm frustrated with Virginia, but am holding out hope. My rheumy wrote my initial application and it wasn't very thorough, so my appeal was packed with info re WG including anecdotal info and two letters from doctors (rheumy and PCP included). I used a PowerPoint of Dr. Seo of Johns Hopkins and added a lot of extra research notes including info re WG being on the SSDI List of Impairments. If it doesn't work, I'm getting a lawyer! I don't know how else to get them to understand my inability to work and the need to be safe from germs (I'm an educator surrounded by kids and others in community all the time). Best of luck!!!

[Christrd]

Thank you for the info. I read it yesterday and right away I went the the nearest family service. There, I was able to apply for Medicare, and for the Snap program. I am gathering all the info I can get to take to the attys tomorrow. And I do have all of my past records with me so I will take them as well.. Thank you so much. I really felt bumed out yesterday untill I read your reply. Thanks again

[Christrd]

You got me thinking annekat. I dont really know if my Dr sent in the info needed or if he really wants to help me. My wife said that he made a wierd face when I told him that I would no longer have insurance. Im going to check out the vasculitis foundation website so I can see if I can find a Dr here in Omaha. Thank you so much.

[Christrd]

@KathyB LOL, I would always get really sick when ever the people around me at work would come in with a cold or the flu. Now working with kids....wow. I do remember reading a list of impairments for the SSD. Im going to print that out and give it to my atty tomorrow. Thank you and good luck. Keep me posted on how your doing.

[annekat]

You got me thinking annekat. I dont really know if my Dr sent in the info needed or if he really wants to help me. My wife said that he made a wierd face when I told him that I would no longer have insurance. Im going to check out the vasculitis foundation website so I can see if I can find a Dr here in Omaha. Thank you so much. Many of us don't live anywhere near the specialists listed on the VF site. Some travel distances or have their docs consult with one on the list. There may be someone on the forum who lives fairly near you and could recommend a doctor. You might search the Wegs Map on here and the member list and see what you can find, or hopefully someone near you will see this.

It sounds like your doc might have a bad attitude about people accepting help from the government or not having insurance, for whatever reason. But you have paid into the system with your taxes, and it's not his job to pass judgement on how you get your needs met.

[mark]

When dealing with any governmental entity it is good to have some information before you start. The United States Social Security Administration has a document on-line that can assist you in determining if you may be eligible for a determination of disabled. It can be found here;

Listing of Impairments - Adult Listings (Part A) (http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm)

It is called Disability Evaluation Under Social Security, also referred to by many as the Disability Blue Book. The section that covers Wegener’s Granulomatosis is Section 14.00 Immune System Disorders. I found it helpful to read the entire section but for the ones that are having a hard time concentrating, I found the following parts most useful;

14.00 Immune system disorders
B. What information do we need to show that you have an immune system disorder?
D. How do we document and evaluate the listed autoimmune disorders?
2. Systemic vasculitis
J. How do we evaluate your immune system disorder when it does not meet one of these listings?

14.03 Systemic vasculitis As described in 14.00D2

For me the disability chase started in the hospital within hours of diagnosis. I had a social worker that had many years of experience to draw from bestow upon me some wisdom that has helped me through this time in my life. Most people that are going through a drastic life changing event have a tendency to see themselves in better physical and/or mental condition than they really are. Don’t do this. First be honest with yourself and admit your life has changed. Second, when filling out paperwork tell the truth, answer the questions accurately as to the level of dysfunction you have experienced. Third, look up Wegener’s in the Blue Book. And I will add, if you meat a condition listed, use their keyword’s.

I hope some may find this useful.

[Lightwarrior]

Wow Mark, this is golden. Thank you so much for sharing such great information. I think you have just helped a number of us. You ROCK!!!

[KathyB]

This info is exactly what I referenced in my appeal with the VRS. Thanks for posting it, Mark!! (verdict is still out with my appeal, though!)

KB

[Christrd]

Hey guys. Hope you are all doing well. Here's a quick update. I felt like the disability claim was going nowhere and felt like my lawyer and Dr weren't really interested in helping me. So I decided to go back to work. I took a job here in Nebraska as a manager at a auto parts store. I would feel fine in some days. Others where not so good. My hands and feet would get numb for some reason, never happened before. I would get dizzy spells as well. December of 2014, I got one of those dizzy spells at work and had an accident. A 30lbs heavy duty Rotor fell on my foot. It felt like I had broken my big toe. Had to go to the ER and get it drilled to drain (relief pressure).
A few days later, I went in to see my specialist and found out he was gone. Now the head of the clinic was seeing me. Dr Palmer. He was very interested in my desease.
My wife made the executive decision to take me out of work due to constantly getting sick for some reason. We re applied for Disability but this time hiring a layer from Heard and Smith. They got to work right away. I was denied 3x already. In February of this year, we got a letter that stated that we will have a hearing 12 to 18 months.
Oh and anothe fun thing that happened this year. my blood pressure was being stubborn and would not drop from 130/90 and thats with 20mg of lisinoprill. So Renal Dr decided to add another pill to the equation. Was doing ok for about 3 days until our trip to target. I was walking and started to sweat a lot. My chest started to hurt. My wife looked at me and said I looked purple. She sat me down and took my pulse. ( she graduates this October to be a Nurse). I felt like a couldn't breathe. Wife took me the the ER and sure enough it was a heart attack. I was put in observation. Next day, my renal Dr came by and was speaking with the cardiologist. He came in to speak with me and asked how I was doing. Then he said to stop taking the new medication he had prescribed. I asked if that caused the heart attack but would not give me a direct answer. So yeah. I'll keep you guys up to date. Hopefully frequently so I won't write so much. Lol.

[Lilly]

Hi Christrd, My wegeners timeline and basic health with the disease is very similar to yours. Diagnosed in 1990, lived with small flares, treatments, but I was young and just pushed through the pain and I lived a basic normal life, (married in 1990) I live on the Gulf Coast, so I rode stand up jet ski (difficult, needs much balance) and kept in shape with aerobics, weights, etc. Then in 1999, moved north to central Alabama, Tuscaloosa-Birmigham area for husbands work. Throughout the entire time, I have always worked a full time job. Sometimes two. Living in our new place was a dream...we lived in the middle of the woods, 5 miles down a dirt road. I got a Jeep Wrangler and we drove for hours in the woods and explored areas and just totally enjoyed it. We lived around the corner from an old boat launch that we could use and go out on the Black Warrior River and play and boat all the time. Living a dream! Then in 2009 I started having problems with my knee. I had 3 arthoscopic surgeries but they all failed. I eventually had to have a total knee replacement. In this time, the sicker I got, the more my husband became distant. I could not do all the physical things we had done for so many years. He expected me to keep pushing along like I always had, but so much damage had been done by wegeners over the years, and my getting older, just made it hard for him to accept the changes that were happening. We divorced, I moved back to Mobile, and lived with my Parents and had my knee replacement surg. Then came the question of how would I support myself. I did have alimony of $650. a month. But I had to pay for my insurance, and copays, medication, etc. So I looked for a job, but no one would hire me. After a year I decided I would apply for disability. It was my only chance for a normal life, and being able to take care of myself. I applied, and was turned down. I did like you, I hired a disability attorney....I could tell he was completely uncertain if I would be accepted because my illness was so vague.....I did not LOOK sick. So I went through the process of getting all my last 5 years of medical records from my doctors at UAB, and all the eye surgeries, nose surgeries, sinus surgeries, (you get the idea) and my otarlarongologist (?sp?) who did bronchoscopies, and throat treatments. I wanted to be able to show the progression of my disease, and also a letter from my Rheumatologist, stating the disease is not cureable, and it is treatable but also is destructive. And you will never heal from what it does to you. My Lawyer also gave me a simple form to fill out each time I went to a doctor. Each time I went in the hospital, had surg., etc. Just to show how much I was having to truly take care of this disease, and the time was obviously too much to be able to hold down a job. I did this for a YEAR!!! I finally had my day in court. The judge sitting above me, and a recorder on the table below, where I was at, facing the judge...2 ladies on one side with computers, and another on the other side typing everything that was said. I was terrified. My arm was in a soft cast from a surg. I had recently, but other than that, I looked NORMAL.....So, the judge looked through my medical information (tons of it) and looked angry.....I was hiding my arm. I had my hands in my lap, under the table. She began asking me questions. She was questioning the many different doctors I had....and what was this illness I had. I just said it was a very rare disease, difficult to diagnose...but once I was diagnosed, I had to be monitored with bloodwork. (I kind of let her dig some of the information out of me, because I just did not want to seem like I was trying to over explain everything) She just stared at me.....and asked me what happened to my arm....I explained that I broke a tiny bone in my hand, but it wont heal because of the meds I take, so they put a tiny screw in it. She looked puzzled.....then asked about my knee. Same thing....She asked if I had looked for a job...I had, and told her my problems about that, little necessary dr visits and surgeries. I told her I was miserable, I always worked, I wanted to work again in the medical field like I always had. But I was just so tired, and I was very upset that my life had changed so much. (she mentioned my divorce...and actually asked if it was that due to my illness...kinda personal I thought, but I answered truthfully-yes) So, my Lawyer was right next to me the whole time, and he never said a word. He actually just stared at me like,.....He wondered how I was gonna get the judge to understand this insane disease, and give me, this normal looking, well groomed, young lady, approval for disability. But in 2 weeks I got the letter.....accepted for disability....going back 3 years! Wow.....surprise. So I received 3 years back pay, $2000. taken out for the Lawyer, and now I was able to afford to live on my own, and take care of myself. It was a stressful ordeal, it was not easy, but somehow it all worked out. Getting a Lawyer is your best chance to be taken seriously. Plus, honesty and years of medical information. I hope you get the disability. I felt like it was a big "D" on my forehead, like having to get disability was saying I was just a big old sicko who had to live off the government, and my life as a normal person was over. But with the support of friends and family, I realized that I deserved this disability more than lots of people who have it, and don't really need it! Also, I was able to find a part time job I went to 2 days a week at a Dr. office, verifying Insurance....I could handle that, and when you have disability, they encourage you to work, if you can, but they give you an amount that you can make a year. if you go over that, then obviously, you are not disabled! Best of luck! Blessings and Love, Lilly

[drz]

It is essential your treating physician support your claim or you have little chance of success. Social Security and private insurance have different standards and procedures for getting disability but both have hoops to jump through and safeguards (obstacles to us) to try ensure that only people who are really disabled get funds. Some private insurance consider disability as being unable to do your current or most recent employment. Others like SS view it as being unable to maintain any gainful employment. Both will often send you to their hired medical expert to verify that you meet their standards. The SS experts are usually more sympathetic than private insurances but then SS disability standards are more stringent too.

Usually a good attorney with considerable experience in the area is necessary when you get to appealing a denial.

[Christrd]

@Lilli Thank you for your inspiring words towards the Disability court date and what to expect. I really hope my lawyer does help out. I picked up my wife from class and I showed her your post. As she was reading it to her self, the words "What A D Bag" came out of her mouth. I knew what part she was at. I'm sorry you had to go through that specially in your time of need. I am a bit confused though, you said you only got $2000.00 for all three years? I would have thought they would have given you a bit more. Well, its something I guess. :laugh:.

[MikeG-2012]

... you said you only got $2000.00 for all three years? I would have thought they would have given you a bit more.

If you reread, it says "$2000 for the lawyer"

[Christrd]

I think it was the period that did it for me lol. But you are right sir

[Lilly]

Hi Christrd, yes, I re-read it and that period was confusing for sure! Yes, MikeG was right, the 2000. was the Lawyers pay. I actually received a nice amount of $10,633.50 for the retro-active back pay. It went quite fast! 2000. for Lawyer, and then I was able to pay my parents back for my divorce lawyer, and paying rent for me to live in an apt. for about a year. And then, I took the rest and put it into a home that my Daddy owned, and I decided I would like to live there. So I was able to install new windows, carpet, paint, etc.....I know you are probably saying to yourself....."you don't have to tell us all your personal information about how you spent your money"....But I am just telling you because it was such a relief to be able to do all that I did! I felt terrible that my parents were having to totally support me, and being able to return that money was such a blessing for me. I had a Peace, and was able to feel independent for the first time since my X-husband fell "out of love" with me. (WHATEVER) :-D My little house turned out so cute, and it was a family effort! We all painted, (I have 3 sisters-2 live in town) and my family and friends all gave me their furniture that they were not using! Its so funny! I ended up with so much furniture! I could not use it all!! But anyway, I know that I am "long winded" and tend to tell many unnecessary details when I post. I think that is because I live alone, and since I am not able to work right now, I just don't talk to people a lot, so I just go on, and on, bla, bla, bla, lol :-) I do sing a lot around my house, and I have a terrible voice so I feel sorry for my cat! Yall take care, Blessings and Love <3

[Gab122]

Lilly, I like hearing all the details [emoji4][emoji1417]

[Christrd]

Hey guys. Just an update. I had a bit of a scare back in November 2016. Looks like the Wegeners came back. It was quite funny actually.
There was a new Dr. at the office I routinely go to and wanted to meet me and treat me. I said it was ok. She was very interested on what I was going through and how I am handling it. All was going good until she asked what I did for a living. My wife told her that I was in the process of filing for disability. Her facial expression just changed and it was very noticeable. She started to say that due to my age, it would be tough to get it. She said she knows this because her husband works at the SSD office. Also that he was a Disabled Veteran. I just smiled. She said there was no reason to not go out and do something. I just kept smiling, gave some blood and thanked her for seeing me that day. About 3 days later, She gives me a call and asks me how I am doing. I had her on speaker phone so my wife could hear her. The Dr.'s tone was very different. My wife and I thought she was probably calling me to apologize for what she had said. Turns out that the wegeners had come back and I had to start treatment of Ritoxin right away. Ill be honest, I got a bit scared. She said she wanted to see me again in December so we can discuss the treatment. I went in and we spoke about my daily life. She prescribed Paxil for depression. How about that, I guess I'm sad. After issues with insurance, I finally had my first session of Ritoxin in February. 20 minutes in to Ritoxin, I started to get an allergic reaction to it. So, Ritoxin is out of the question now. Now I am taking 200mg of Azathioprin daily. Cytoxin may be in my near future.
Anyways, for the update, lol, I finally have my disability hearing date. I am nervous. There is no reason to be. I have a lawyer. I am just glad that there is almost an end to this. We ended up loosing our home and had to sell a car. But we have high hopes. :tongue1:
I will keep you guys updated now that I was able to change my password. lol.
Lots of Love.
Chris

[Alysia]

Hey guys. Just an update. I had a bit of a scare back in November 2016. Looks like the Wegeners came back. It was quite funny actually.
There was a new Dr. at the office I routinely go to and wanted to meet me and treat me. I said it was ok. She was very interested on what I was going through and how I am handling it. All was going good until she asked what I did for a living. My wife told her that I was in the process of filing for disability. Her facial expression just changed and it was very noticeable. She started to say that due to my age, it would be tough to get it. She said she knows this because her husband works at the SSD office. Also that he was a Disabled Veteran. I just smiled. She said there was no reason to not go out and do something. I just kept smiling, gave some blood and thanked her for seeing me that day. About 3 days later, She gives me a call and asks me how I am doing. I had her on speaker phone so my wife could hear her. The Dr.'s tone was very different. My wife and I thought she was probably calling me to apologize for what she had said. Turns out that the wegeners had come back and I had to start treatment of Ritoxin right away. Ill be honest, I got a bit scared. She said she wanted to see me again in December so we can discuss the treatment. I went in and we spoke about my daily life. She prescribed Paxil for depression. How about that, I guess I'm sad. After issues with insurance, I finally had my first session of Ritoxin in February. 20 minutes in to Ritoxin, I started to get an allergic reaction to it. So, Ritoxin is out of the question now. Now I am taking 200mg of Azathioprin daily. Cytoxin may be in my near future.
Anyways, for the update, lol, I finally have my disability hearing date. I am nervous. There is no reason to be. I have a lawyer. I am just glad that there is almost an end to this. We ended up loosing our home and had to sell a car. But we have high hopes. :tongue1:
I will keep you guys updated now that I was able to change my password. lol.
Lots of Love.
Chris

Thanks for the update, Chris. Sorry that the WG came back. When they gave you rtx, did they give you 100 or 120 mg steroids (pred) in IV before starting the rtx ?

[Poppy65]

Quick back story.
I was diagnosed with WG back in october of 09. I was scared and confused but I didnt let it bring me down. So I went back to work right away. I got married and moved from LA to Omaha in 2010. Here, I found work in Omaha right away and a Dr to follow up with the WG. Everything was going fine untill January of this year. I began to feel tired and fatuige for no reason. I had shortness of breath and my legs felt like they were on fire. It had gotten so bad, thet for the month of July, I only worked for 6 days. I had filed for FMLA, so my employer was ok with me missing work. One morning I felt like a Train had hit and I could not stand on my own two feet. So I made the decision to not return to work. An old coworker asked why didn't I apply for Disability? She said that one of her relatives has a similar case and was approved for disability and got Medicare. The Medicare would really help me out since I now have no medical insurance. So I filled out the Questionaire from the Disability website and sure enough, I had an Interview the following week. I was adviced that they would gather the remaining medical info that was needed and I would have a responce by the end of August. I recived a letter August 10th from them. It explained that my condition did not qualify me for disability. Today I had my 3 month appointment with my Dr. I explained to him that I had applyed for disability. He said it would be very hard to get disability and I may not get it....I dont know, somthing about how he said it did not feel right. He later explained that the disability office had requested my medical records. He said that ever since I have been going to his office, I have shown to be ok. I told him that I was not doing ok I needed help.

Long story short,
Can I apply for disability if I have WG? I have an appoinment in two days with an attorney that specializes in disability law. I just dont want to waste my time and his.
If there is any info that would help me out, let me know. Thank you.

Chris.

I used to work in a CA welfare office and would refer people to apply for SS disability all the time. Only people with terminal illnesses were approved on their first application. I don't know if this is true, it was said that- you have to re-apply 3 times before you are approved by SS as disabled.


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[meganjean26]

I don't think disability is the best solution. Wegeners is generally treatable. What drugs are you on? Why are you not improving. Are they missing something? You may need a new doctor. Maybe this leg thing is not wegeners. Do you have neuropathy?


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[Christrd]

I don't think disability is the best solution. Wegeners is generally treatable. What drugs are you on? Why are you not improving. Are they missing something? You may need a new doctor. Maybe this leg thing is not wegeners. Do you have neuropathy?


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See, here is the thing. Like I had stated in my previous update, Rituxan had failed and we are now trying some other types of medication to keep it under control. The medications that I am taking now are taken 3x a day with no exception. They really kick my butt and all I can do is stay in one spot or I get really dizzy and nauseous. According to my DR, this is just going to be for a while until they figure out what is going to work.

Just last week, I could not walk at all. Both of my feet hurt so bad. It felt as if I dropped something heavy on them. It caused great pain when I tried to put any type of pressure on them. That lasted about a week. This is not the first time this happens. According to my DR, he says its a normal occurrence due to the vasculitis. He prescribed pain meds, but did not even help.

This year, my urologist told me that I am now at stage 3 of renal failure. I am right at the border of having to do dialysis.

Last but not least, No job will hire me out here when I am taking all of these medications and or have to take time off just because I Simply cant walk that week. I lost my beautiful home due to being a 2 income home down to one.
So please, Meganjean26, enlighten me. If you don't think disability is the best solution, then what is??

[LisaT]

I think those who have wegeners and are still able to work are in remission, or the lucky ones whose fatigue and other symptoms are not debilitating. We're all different, but one thing that seems consistent for many of us, is that managing our disease, symptoms, appointments, medications and the like is a full-time job of its own. When we are flaring or have residual symptoms despite treatment that stops the disease from progressing, it can be difficult to keep up with just the normal activities of daily living, never mind work outside of the home. I would never judge anyone for needing disability; nor would I question the veracity of the claim. They make you jump through so many hoops before approving you. Just the fact that so many wegeners patients qualify is evidence that's it's often a debilitating/disabling condition.

I know now that in my case, I pushed through pain and fatigue and brain fog and forced myself to keep working while unwell for years before I finally came to the realization that I couldn't do it any more. I literally collapsed after a late-evening meeting and couldn't get out of bed the next day. I've been mostly off work ever since, and that was seven years ago. The system in Canada is very different; but I think wherever you are, the doctors' input is crucial. The good ones know how they need to word things to meet the criteria of those assessing your fitness to work.

It sounds very clear to me that you're not in a position to work, and trying to would make you more ill. Stress also exacerbates illness or makes it harder to recover. Many of us are brought up with such a strong work ethic that we feel like failures for no longer being part of the rat race. I struggle with this all the time. But more and more I've come to realize that I need to put all my time and energy into caring for myself and my kids, trying to achieve remission so I can be around for them as long as possible. This is such a fraught issue and has such a huge impact on a person's self-esteem (even moreso for men, I think, due to gender stereotyped roles). I don't think it's helpful when doctors or others add guilt, shame or doubt to our self-assessment. Almost everyone I have met or communicated with who is on disability would much rather be healthy and working. I get questions all the time from well-meaning acquaintances who ask if I'm going back to work. Because i look well, it seems hard for people to grasp that I am not well enough to work and manage the rest of my life. Trying to explain that I get a couple or a few good hours each day and am useless the rest of the time comes off as whining or complaining, so I've stopped trying to explain. My family and close friends get it. My ex did not and constantly belittled me for not contributing more financially. Kicked him to the curb and moving on. I guess this is a bit of a pet peeve issue for me.

You know how you feel. Nobody else does. If your doctors don't or don't care to, that's a good reason to get new ones. Good luck at your appeal!!!

[Debbie C]

Meganjean, I have to agree with Lisa T. I don't see how you can judge who is able to work or not. I am also on disability. Everyone is different

[John S]

I guess that I am lucky that I first started struggling with this mysterious disease at age 65. I was the owner of a small business and my employees did a heroic job of keeping it going while I bounced from Doctor to Hospital to Doctor to....
They did such a good job that I sold one of them the business. I could not have kept working, in fact, even in remission I could not do what I used to do.

[Alysia]

I am sorry, Chris, that you have it so rough. Can I ask (because of other friends who might need that info) - what meds are you on, if rtx didnt work ?

Ditto to all what Lisa and Debra wrote above.

Magen, wg is not allways treatable. Go to the weggies map. Do you see the candles ? They are there in memory of our friends who passed away. Too many, too young, too soon. RIP warriors.

[elephant]

Christrd, I know what you are going through! I was at stage 3 and eventually ended up with kidney transplant. Your bilateral foot pain needs to be controlled and kidney failure has many symptoms: nausea, exhaustion, electrolyte imbalances, dizziness, blood pressure up/down, palpitations, and much more. At this time I think you need disability . Once I got my kidney transplant it changed my life. Keep communicating with the rheumatologist and hoping you get relief soon.

[marta]

I don't think disability is the best solution. Wegeners is generally treatable. What drugs are you on? Why are you not improving. Are they missing something? You may need a new doctor. Maybe this leg thing is not wegeners. Do you have neuropathy?


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This comment to me sounds like it comes from someone who is not very well versed in the world of Wegener's.

Just so you know. If you can get disability, do. Please. Yes absolutely you can apply for disability for WG. They'll try and fight because they generally don't understand the disease (they did with me, but I fought it and within a week from me writing the appeal letter, in which I spanked them for making decisions on someone's life without understanding the disease itself, I got a meek phone call telling me my disability has been approved by Health Canada.)

Wegener's is an INCURABLE disease. I'm not sure where the idea that it is 'generally treatable' comes from. It affects everyone differently. The drugs work on everyone differently, but the best you can hope for is remission. What remission means is that the disease is not cured but is subdued - for the moment. I believed I had it licked on my last remission, and it wouldn't come back, but when it did, it was almost worse than the first one, with way more symptoms, that were way more dangerous and life threatening. One thing you'll learn about WG (if you do any sort of research on the topic) is that you want to avoid flares. With each subsequent flare, the efficacy of the treatment deteriorates, and the chances of going back into remission with as much health as the previous remission are slimmer. That's just stats.

Another thing worth noting is that if you are in the midst of a flare with WG, and you end up with other mysterious ailments, the most likely answer is that it is related. Since WG is a systemic disease affecting a certain radius of blood vessels, it can hit you anywhere. Knowing that humans fall within a range of physiology, some systems and/or organs that might be affected in one person might not be in a different based on the fact that this particular radius of vasculature might fall in different areas in different people. What I'm trying to say is if there is something physically strange going on and you're not in full remission, then there's more WG smouldering and needs to be taken care of.

I know a WG friend who was having heart issues while on treatment for his flaring WG. His doctors were very prideful and refused to interact with him as a human and decided to stop all of his WG meds and put him on heart meds. We spoke and he told me this and how now his heart is not feeling better, and his WG was starting to go full blown. I begged him to go to Vancouver and see someone who understands WG, and he did. Thank God. Because once they checked him out they too believed that the heart issues were directly related to the WG and not a separate issue, put him back on his WG meds (more aggressively) and took him off the heart meds his GP's had put him on, and he improved within a couple of weeks. On both counts.

He ended up selling his home and moving across the country to be near doctors who understand this disease. That's how important it is to understand this and not blindly follow advice of people who know nothing about it. I just spoke to a recent med school grad and she said the entire section on Vasculitis in med school was an afternoon lecture. That's it. That's all.

Educate yourself. Stand up for your rights. Knowledge is power in this game, and I absolutely think you should apply for disability. You will feel good/healthy at times (and maybe guilty for being on disability during the good days) but you'll undoubtedly have horrible times when working is completely out of the question. Since you can't predict when each will be, it's better to be safe financially than having to figure out how to pay your mortgage when you can't even make it out of bed.

[marta]

I used to work in a CA welfare office and would refer people to apply for SS disability all the time. Only people with terminal illnesses were approved on their first application. I don't know if this is true, it was said that- you have to re-apply 3 times before you are approved by SS as disabled.


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Hey Chris.

I had to appeal their decision, and as I said earlier, once I pulled out both barrels (on my keyboard) I got a very apologetic acceptance. I can send you the letter I sent them if you want to look at the points I used in my appeal. Something I think we all share. I don't want to post it publicly however, so if you'd like to check it out, send me a PM. I hope that we're at a point where you've been approved, and this is now a non issue. Also, it sounds to me like they've never fully treated you properly for a flare. The AZA (imuran) is a maintenance drug. If they tried RTX and it failed, then you clearly need the treatment of the 'big guns' and I'm curious why they aren't using CTX (cytosine) to treat you. I was on it for a year, and it sure did the trick. It's just that that's about as long as they want you to be on it for your whole life, so now CTX is out of my bag of goodies and RTX is all I have (I too have had a few allergic reactions during infusion, but we just slow it down, add a poopload more Benadryl, and hope to get it all in.)

Best of luck, and please if you'd like to get a template to fight a disability rejection, I'd be happy to share. Privately.

[marta]

Wow Mark, this is golden. Thank you so much for sharing such great information. I think you have just helped a number of us. You ROCK!!!

I miss you Lightwarrior.
I miss our beautiful Christy.

[Jaha]

Chris,
I hope things are improving for you. I owe you a big apology for liking the post about not having to be on disability. I really don't know where my head was at that day. I am so sorry for all the struggles you have been going through. I hope you got your disability by now and are on the right treatments. This disease is so unpredictable! Some people are fortunate enough to have very good insurance, their treatments work from the get go and they are financially good to go. I wasn't one of those fortunate ones either. I am applauded at myself for even responding to that post. I am on disability and had to go that way because after trying to work for two years in, I couldn't. Please forgive my Brain fog!

I too had reactions to RTX, I've had 21 of them. I have been on everything that there is to take. They now give me IV Benadryl, IV prednisone and Tylenol before each infusion. I then have to take Tylenol and Benadryl every 4hrs, up to 48 hrs afterwards. I hope you are seeing a Wegs specialist, so that they can treat you properly.
My husband and I too were blown out of the water with the financial hardships. I wish you all the best with getting your disability, it will be such a relief for you. Please keep us updated on your progress.