hello everyone

[writer]

Hello all, I am a fairly long term sufferer but it has progressed very slowly.

It started with scleritis in 1991, which came and went for years, then about six or eight years ago it started to affect the feet and legs as pains and swellings, and was finally diagnosed as vasculitis when I came up in purple spots. The next flare was also in my lungs, and a biopsy showed it to be Wegeners. The last flare, last August Bank Holiday, (They always seem to be bank holidays, I have done Christmas, Spring bank, etc.) caused a lump behind my right eye and I woke up blind in it one morning. A course of iv cyclophosphamide later and now I have moved from cellcept to methotrexate and am working my way into that, 12.5 mg so far. I have partial sight back , but when the eye works well I get double vision..

I have been a regular lurker one degree detached for some time, the mem-sahib visits and reports back, a writing forum is normally the extent of my web use.


Pleased to meet you, hope to know you better, all the best, Olly.

[annekat]

Welcome, Olly. Glad to meet you and will be looking forward to more posts from you.

[Sangye]

Hi Olly, welcome to the group--officially. LOL

Sorry to hear your eye got involved. That's very scary. I don't have Wegs involvement with my eyes but I lost my vision temporarily due to elevated intracranial pressure in 2006. The pressure issue has persisted but my vision is pretty normal.

I hope you'll continue to post. I detect a good sense of humor in your post!

[Natalie]

Hi Olly , glad you logged in and said hi , :) I lost my site in my left eye from wegs , very scary stuff . have delt with it now and just have to move forward ,

[mishb]

Welcome Olly and pleased to meet you also.

.................ohh, the circumstances we have to find ourselves in to enable us to meet some wonderful people :biggrin1:

[Al]

Greetings, Olly, and à votre santé! Litterally. We are a varied bunch, separated, perhaps, by a common ailment. With your sense of humor and ironic timing, you will fit write in (sorry!): Everyone knows that medical emergencies happen on holidays, just like the car dies late Friday afternoon.

Bummer about the eye. Let us know about how you progress!

Al

[writer]

Thank you for the warm welcome everyone. I notice both the people who lost sight in an eye used the word 'scary'. Actually it was, much more so than the actual circumstance justified, and not really about anything like 'going blind', just fear. Not like me, I seem to get on with the new normal mostly, though I won't always accept it. I was fitted with a plastic leg support at one time because I had foot drop, but a change of med and a lot of walking and I haven't worn it for years now, on the other hand I accept some things as inevitable and have stopped riding motorbikes and driving cars.
As I realised I had to be less active physically I started writing, here's a little piece I haven't shared before, but you might get some amusement.

Wegener’s whinge

“How are you?” They ask,
and what am I to reply?
Should I speak truthfully?

“I have a chronic and incurable condition,
take six different drugs and two supplements,
a total of sixty nine tablets a week, plus drops
in both eyes
twice a day.

Thirty three tablets are to prevent recurrence
Thity six fight side effects of the thirty three.

Sometimes I have a flare, become a little more
disabled. I have numbness in my feet and legs.
My eyes have cataracts from steroids
scarred sclera
stop the op.

Sinus headaches come at the drop of a hat.
Double vision drives me mad sometimes.

The lump put pressure on the optic nerve.
Treated, the sight has partially returned.
If I am tired I get cramps, which wake me
and keep
me tired.

The tinnitus is loud at times, soft others.
The vertigo varies from almost steady
to walking a wobbly line across the road.
People look
“It’s a bit early”.

I think not, I’ll stick with the half lies,
“How are you?”
“Oh up
and down,
still here,
not
complaining.”

[annekat]

Nice poem, Olly. Seems like it would be therapeutic for any of us to attempt such a thing.

I didn't mention I also have some double vision because I don't think I have the major eye complications you have. Mine comes and goes and seems to be when my eyes are tired. Driving can be weird. It only happens when using both eyes; either eye alone sees normally always, so it seems to be a weakness in the muscles that make them work together. I am way overdue for a general eye exam and new glasses prescription. Obviously, you have a deeper problem, and since I have Wegs, I should be aware and not discount the possibility of anything similar in myself.

I do also have some tinnitus that comes and goes. Recently, it is a "roaring" sensation, and it has not gone away for a few days! It is unusual for it to last that long. I do need hearing aids in both ears, as my eustachian tubes are not functioning well if at all. Otherwise, I'm doing pretty well, and am happy that the sinus symptoms and resulting coughing up of stuff from my bronchial tubes are subsiding nicely.

I'm glad your sight has partially returned. Best of luck, and keep us posted.

[Psyborg]

Welcome to the forum Olly. Sorry you have to be hear, but it's a great place to be if you have to.

[Al]

This is excellent, Olly, and the writing must keep you generally out of the alleys....

Al

[writer]

Get that eye test and glasses annecat, and don't drive when you are tired. I had a RoSPA advanced driving certificate and enjoyed my driving, but I probably gave it up before I had to legally. About 9 people a day die on the road on average, that means an awful lot more are really badly hurt, I enjoyed driving, but I never wanted to take the chance of contributing to that.

[pberggren1]

Get that eye test and glasses annecat, and don't drive when you are tired. I had a RoSPA advanced driving certificate and enjoyed my driving, but I probably gave it up before I had to legally. About 9 people a day die on the road on average, that means an awful lot more are really badly hurt, I enjoyed driving, but I never wanted to take the chance of contributing to that.

Good for you writer. I know many every day that take the lives of many in their own hands when they hit the road.

[annekat]

Get that eye test and glasses annecat, and don't drive when you are tired. I had a RoSPA advanced driving certificate and enjoyed my driving, but I probably gave it up before I had to legally. About 9 people a day die on the road on average, that means an awful lot more are really badly hurt, I enjoyed driving, but I never wanted to take the chance of contributing to that. Good advice, but it's not really that I am physically tired. I think the eyes get tired faster because the glasses prescription is old, so yes, that is a big priority. But I'm only talking about local driving to and from a workplace, errands, and doctor's appts., and I live alone and have no choice. Most of the time it is fine. I do avoid night driving, because that is worst. Warning heeded, and I'll let you know when I get the eye exam!

[Dryhill]

I think not, I’ll stick with the half lies,
“How are you?”
“Oh up
and down,
still here,
not
complaining.”

Olly, welcome to this most exclusive of clubs. There is no doubt with your sense of humour you will fit in wonderfully ....... I wonder if sense of humour could be another way for the medics to check if someone is a weggy?

Some time ago I had to explain to my Dutch neighbour that when someone here in the south-eat of England, asks "how are you", they really only want to hear "ok thanks". So like your poem I generally reply "as well as can be expected", only those close to me (like my Dutch neighbour) get the trueth.

Jim

[Al]

Olly, welcome to this most exclusive of clubs. There is no doubt with your sense of humour you will fit in wonderfully ....... I wonder if sense of humour could be another way for the medics to check if someone is a weggy?

Some time ago I had to explain to my Dutch neighbour that when someone here in the south-eat of England, asks "how are you", they really only want to hear "ok thanks". So like your poem I generally reply "as well as can be expected", only those close to me (like my Dutch neighbour) get the trueth.

Jim


Jim, sometimes I think that Jack Nicholson (reprised by Homer Simpson) had the most appropriate line: "You want the truth? You can't handle the truth!"

Al

[Dirty Don]

....... I wonder if sense of humour could be another way for the medics to check if someone is a weggy?

My rheumy actually did comment on that in her first dx/report on my condition. Was kinda nice to hear even tho I felt like...well, you know. Helps me smile more often now when things aren't quite as good as I'd like...maybe it is a good symptom...Al makes me laugh all the time...maybe that's why he's so good on here! Comfort & humor go a long way with all of us!

[Al]

My rheumy actually did comment on that in her first dx/report on my condition. Was kinda nice to hear even tho I felt like...well, you know. Helps me smile more often now when things aren't quite as good as I'd like...maybe it is a good symptom...Al makes me laugh all the time...maybe that's why he's so good on here! Comfort & humor go a long way with all of us!No need to insult me, Don. But I will observe that Weggies do often take a wry view of their own condition--hey, what else can we do? Gallows humor is still, potentially, funny stuff.

Al