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Thread: Help, Disability Question.

  1. #31
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    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.

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  3. #32
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    Default Re: Help, Disability Question.

    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
    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.

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  5. #33
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    Default Re: Help, Disability Question.

    Quote Originally Posted by Poppy65 View Post
    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
    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.

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  7. #34
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    Default Re: Help, Disability Question.

    Quote Originally Posted by Lightwarrior View Post
    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.

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  9. #35
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    Default Re: Help, Disability Question.

    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.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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