not cool

[cjhnsn29]

This is the first time posting to this group. I am not sure how this site works. I just was released from the hospital Mon for my WG.I felt like a pin cushion and it is frustrating that majority of the people have not heard of WG and the first thing that they ask is (Can I catch it) thx for the concern.

[Dirty Don]

Welcome CJ. glad you have found us so quickly. As for the site, spend time going thru the search engine if you have any questions about a topic you need help with at the time. Annnnnd, that will lead you to more threads, including the daily ones. Tell us more of your journey to date. There will be some who have had a similar experience and notes can shared and learned from. I just hate ending with prepositions...tooooo late for coffee...anyways: My first question is do you have WG experienced docs attending to your case? Best to you and ask lots of questions!!

[vdub]

If they ask if they catch, just tell them your cell mate in prison didn't get it. That ought to put them on the defensive. :-)

[cjhnsn29]

Don
I do have mega Dr's tending to my WG! I really understand a lot of people with WG can get annoyed been there. I really wish I can loan them my Dr's but they have to give them back. I just want everyone to have a POSSITVE experience with there WG. It's a lot to handle without having carless Drs. I can relate to a lot of these posts. The one lady that can't taste or smell I have the same problem. I did get SSD at age 43 with 3 yrs back pay and medicare And B. Once you receive a POSSITVE experience with a professional Dr. It begins to make u feel better with dealing better with WG.

CJ

[mishb]

I'm glad you have great doctors cj.

Welcome to the forum. I'm glad you have taken the time to read through other threads and posts.

Best of wishes to you and ............

[Jayne 14]

Welcome to the group / gang
Great help advice & support here
👍


Sent from my iPad using Tapatalk

[Jaypfei]

CJ,
Could've been worse... When I explain that Wegs is an auto immune disease, I had people say..." You have AIDS?" I now just say that it's a type of vasculitis . Yes, it does get tiring answering and explaining this disease, even to medical professionals. But hey, we're educating.. Even if it's one person at a time.

Welcome to the forum.

[B_in_Florida]

This is the first time posting to this group. I am not sure how this site works. I just was released from the hospital Mon for my WG.I felt like a pin cushion and it is frustrating that majority of the people have not heard of WG and the first thing that they ask is (Can I catch it) thx for the concern.

If I am going to tell someone I have a disease, the first thing I tell them is that it's non-transmittable, but I don't go around telling people I have a disease. I don't tell co-workers, I don't tell friends, I don't tell strangers. I don't like the idea of being treated like a "walking disease," so I never tell anyone. People look at you differently, you are no longer "normal." I don't tell people, because they no longer look at you as a regular human being, you are now something less, something to give pity to.
The disease is not who I am, so why should people go around telling people that they have a disease, just so those people can associate you with it? I also never tell my employers before they hire me, because I figure that is just another reason for them to choose another person over me, and I've stopped telling employers after being hired altogether, I see it as just another reason for them to find an excuse to fire you.

I can relate to the part about being a pin cushion. Before I was diagnosed, I was in the hospital for a bit over two weeks, and every night a nurse would wake me up, then stab me with a needle to take blood - not nice. (I think this was becuase I was anemic, and they needed to keep my blood under check.) Shortly after they released me(maybe the same day, or a few after. I don't remember.) I needed to return to the ER due to an emergency I was having. I had so many bruises in both arms, the ER doctor/nurse was confused for a few seconds about which arm would be best for taking blood.

[Dirty Don]

Welcome B, glad you're on and contributing. All thoughts (about WG), questions, experiences, etc. are discussed on here. If you want to tell your story, there will be peeps on here who have gone thru nearly the same physical and emotional experiences you have. Someone's always on, so fire away. Best to you.

[annekat]

When I cough in public, I have told people it is not from anything contagious. They have to take my word for it. I only remember one person, when I said I had an autoimmune disease, act weird about it like it could be AIDS or something. Most understand what I mean. But it can be helpful to say it is like lupus, RA, MS and others they have heard of, only more rare, and I always say it is a form of vasculitis, so if they want, they can google it. People can remember that word, not so much the actual names given to our disease. I am so much better now, I think there may be people who think I am "cured" or somehow over it. I sometimes have to remind them that I'm more limited than I used to be in what I can do and that I still get fatigued easily and can still have flares.