Hello

[SuperBill]

Hello all,

I have been suffering with this stupid illness for 2 years now - can anyone tell me when things get back to normal, or if they do at all????????

[NikkiNicole]

Hello,
I am wondering the same thing. I've been on MTX since August and ... I still hate life.
Of course, I work in a germ factory so I am constantly inundated with germs.
I think I'm getting the flu right now.

*hugs*
Someday, right?

[Debbie C]

Hi Bill and welcome to the forum.In answer to your question I think the "normal" you had is gone you just have to live with the new "normal" and hope things only improve.Where do you have your wg. invovlement at and what drugs are you on?
You have found a good place here to get questions answered or just vent.There are alot of caring and knowledable people here.

Nikki...sorry you are still sick,I hope it's not the flu.Can't you take time off work for a few days ? Hope you feel better SOON !!

[annekat]

Welcome, Bill! That's a hard question to answer, as some people get back to their "new normal" sooner than others. There is a lot of variety in how severely different people are affected by WG and what areas of their bodies are most affected. That you are still having problems after 2 years does not mean you are abnormal in any way. For me, it has been 2 years and 8 months since diagnosis, and I'm MUCH better than I was the first year, and a lot better than I was the second year. But I'm still on the meds and if I went off them, would certainly have a flare. I had one a year ago just from being on too low a dose of my maintenance immunosuppressant, MTX. And there are a lot of things such as stress that can affect how fast someone gets better. So, let us know exactly what you are going through, what meds you are on, and what progress you have made, and maybe we can give more feedback. We'd also like to know where you live and whether you have access to top WG specialists, how much experience your doc has with the disease, etc. I'm one of those who is getting by with an inexperienced doc and the help of this forum, so if that describes you, don't be afraid to say so! In my case, what I've learned here tells me that in spite of my doc's inexperience, I'm getting pretty standard treatment and it is working as well as can be expected.

[Dirty Don]

Hello all, I have been suffering with this stupid illness for 2 years now - can anyone tell me when things get back to normal, or if they do at all????????

Welcome Bill...glad you joined us...this place may change how you feel about what is now unavoidable. Normal has been redefined for all of us. There will be moments of 'normalcy'...mostly times better than others kind of days. I tend to measure in days now...more positive for me. From a medical POV, there is hope...and there is hope...and recognition of this kind of disease is getting better, so research is hopefully improving. That means...no, at this time, there will be no normal again for most of us, not as we pictured it at whatever age life was the most active & energetic to date...way it is now...but there's hope...

[Alysia]

Hello all,

I have been suffering with this stupid illness for 2 years now - can anyone tell me when things get back to normal, or if they do at all????????

wow, this question is touching "exposed nerves"...
too much emotions...
how can I answer you ?

:unsure: :confused1: :scared: :predrage: :crying: :wink1:
(can't add more then 8 smillies, but the list is longer... )
and also :love: to my amazing friends here.
and this one is for you to cheer you up :hug2:
welcome to our rare club.

[mishb]

Hi Bill and welcome.

Not a silly question that you have asked there - it's one that we all want to know.

How are you feeling Bill? you mention that you are suffering from this disease.
I hope after 2 years that it is a little better than it was at the beginning.

Keep asking the good questions.

[drz]

Hello all,

I have been suffering with this stupid illness for 2 years now - can anyone tell me when things get back to normal, or if they do at all????????

How much damage did Wegs do to your body? Major damage to lungs and/or kidneys will result in permanent changes which may only have some partial recovery. Other things like damage to sinuses are likely to cause some permanent residual symptoms that will wax and wane in severity as does fatigue for most of us. Most other symptoms are often variable with degrees of recovery. Some people seem to fully recover with no apparent limitations, others become very limited and need to make major adjustments to accommodate their new life style and accept a new "normal".

[SuperBill]

Good day, and thank you all for the reply's and likes - To answer questions posed, I am Bill, from Hamilton On Canada, but I have been living in Halifax NS Canada for the last 14 years, sort of...I am a mbr of the Canadian Armed Forces and out of the 14 years in Halifax, physically been here about 5 out of those 14.
As far as WG goes, I was diagnosed 12 Dec 2011, although it hit me like a tonn of bricks the privious August, 2011. Started in my head and upper resperatory, and the first year was absolute Hell! Not only did I get the perfferated septum, but I actually had all the septum and sinus walls rotted away and my nose ended up not only saddleing, but the whole thing sunk into my face, And that's sucked, cause I had a really nice nose:) So, I ended up haveing 3 surgeries to fix things, but the nose, although it looks better, still looks funny, oh well. Upon diagnosis, I was started on Methotrexate and prednisone, was on that for the last 2 years, prednisone on and off, but I relapsed this past Aug Sep timeframe and now I am off Methotrex all together and getting Rituxan treatments - 8 weeks into it starting to feel A LOT better, but not 100%.
Had (sometimes still do) terrible, absolutely HORRIBLE head aches, like make migrains look like a slight tick head aches. Alot of sleeping pills, pain killers, meds that I relly don't like to be taking.
As well, With this illness being as rare as it is, I had to endure my employer having the attitude of me "milking a sinus infection". So, to add insult to injury, pun intended, I was a mover and a shaker, flying through the ranks, got sick, and career Stopped in an instant, so that gave some emotional issues, to which the CAF don't really know how to handle.
Although I will say, I have the head of Rumatology from Capitol Health as my lead Doctor, and she seems to know what she is doing, and very well. I am very lucky that way.
So, does this sound like anyone else out there?

[Dirty Don]

Sounds a bit like every one of us! If you have time, read thru past threads on different people's experiences...it's amazing some of us are even alive...but it will do one good to see others' experiences...seriously Sir!! LOL...I'm the 'blog clown'...never mind me sometimes!! Best to you!

[Jaha]

Bill,

Glad you found us, it does make this disease alittle bit more tolerible,to have others to talk to about it. Try to remember that nobody around you actually knows how crappy you feel both physically or mentally,but you and don't feel guilty for being sick. Best of luck to you!

[carriej22]

An East Coaster!

I am so excited! Even if you have been transplanted from Ontario.

In a weird way... Because obviously no one likes to be sick.

Rituxan really helped me quite a bit... Hoping it works for you. I had my infusions in June, and by October I was feeling more normal. However, it was a big deal to push myself everyday to do a little more.