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Thread: Help, Disability Question.

  1. #21
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    Lilly, I like hearing all the details
    Last edited by Gab122; 10-06-2016 at 01:01 PM. Reason: Typo

  2. #22
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    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.
    I will keep you guys updated now that I was able to change my password. lol.
    Lots of Love.
    Chris

  3. #23
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    Quote Originally Posted by Christrd View Post
    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.
    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 ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  5. #24
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    Quote Originally Posted by Christrd View Post
    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.


    Sent from my iPhone using Tapatalk

  6. #25
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    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?


    Sent from my iPhone using Tapatalk

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  8. #26
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    Quote Originally Posted by meganjean26 View Post
    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?


    Sent from my iPhone using Tapatalk
    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??

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  10. #27
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    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!!!
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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  12. #28
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    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
    Life isn't about how you survive the storm, but how to dance in the rain !

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    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.

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  16. #30
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    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.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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