Weggies & Work

[malin]

Hi,

I'm just curious to find out more about living with weg. and working?
What do you work with, how many hours do you work, is it "light work or "hard" work, does your bosses know about your weg., how do they handle it? etc etc

Haha a lot of questions there but I'm just curious, I myself work from home for a company called Service 800, (apparently they're supposed to have their base in the USA)
I work as a Customer servive rep, meaning I call people up and various types of customer service surveys.

My bosses all know about my condition and are extreamly understanding about it, for example they never have any problems with me having to go to appointments every month, blood test here n there and the quite common sick days every now and then. They are also usually brilliant with working with me to make sure I can finish earlier and have shorted days if I feel I need it (unless I've got loads of deadlines to meet).
The hours I work are very mixed, some days I work 4 hours and the next 7, I work 5 days a week and usually end up at around 25-35 hours a week.

I love working from home because I can be as comfy as I like and even if I'm not on top form I can still get some hours in at work without having to struggle with things like commuting in cold weather etc.

Anyway enough about me! Please share your experiences!

[malin]

One more thing!
If anyone has any tips or ideas about how I can make sitting at a desk and using the computer mouse easier on my wrist? I sometimes get really bad jointpains there, especially if its cold!
Would something like a usb powered heated mouse mat work? - Like this one: gadget4all.com (http://gadget4all.com/prod_detail.php?prod_id=01091&dept_id=008&cat_id=036)

[Hammy8241]

Work 4 day rolling shift system 2 days, 2 nights, 4 days off. Trade: Lorry Driver. Generally driving plus light manual work, sewage industry. Generally cope ok. Work fine with WG and give me time off as required.

No calls please:thumbsup:

[elephant]

Malin that sounds like a great job. I use to work as a RN but for now I am at home. I probably won't be going back to nursing...maybe something less stressful.

[Jack]

During my good years I carried on working pretty well as normal. A lot of it sitting in front of a computer screen, but at other times testing cars or working away from home. I had various periods off work due to illness, but I worked for a major company and had been there since leaving school so there were no problems there. Towards the end of my time at work, I had increasing amounts of time off and ended with a 2 year absence (fully paid). I was then obliged to retire on ill health grounds because I was no longer able to do my job or any other that they could offer me.

[Psyborg]

I'm in IT...the hardest thing right now is that I get really tired at about 11:30 every day. Work has been very understanding and are letting me work half a day in the office (morning) then half at home after a nap. So far that seems to be working pretty well at minimizing the issues I get with tiredness. It's actually not the sleepiness that's the problem for me, it's that I have a very hard time thinking straight once I get sleepy.

Physically of course my job is a cakewalk, but when I can't think it makes it hard to code :)

[JanW]

Work from home as a journalist so hours vary obviously. Luckily I don't suffer from fatigue (good thing with a 12 year old and 8 year old) so working has been fine.

[freakyschizogirl]

I'm a carer..i work 37 hours a week and find it isnt too hard on my health cos its low impact. Before that i was a cashier and i found ti really draining emotionally and physically. I do get the odd day where i get bad headaches and dizzy spells and i take the day off. Cos its a pre existing condition and i am seeing docs for it my employers were ok with it.

[pberggren1]

I have not been able to work much the last few years since having Wegs. The longest I worked was for about 4 months but that is when I was in remission and had no symptoms and was med free. I have not worked since March but have a bad lung infection as an excuse for that. I would love to go back to school or work some day but feel I never will because when I try those things I just get a bad flare of Wegs so I guess I will just accept living with my parents until they die or I die first.

[Jack]

That's a short term outlook Phil. You can never predict the direction Wegs will take you in and I'm sure you will do better once you have this infection under control. It took me 5 years to get stable, but then I was able to work full time and raise a family. Sure, things can go down hill (tell me about it!), but things can also improve.

Don't write yourself off just yet!

[Sangye]

Jack is right, Phil. You might have had this infection lingering for some time. Who knows how much it weakened you?

I know it's probably impossible to imagine you can ever work or go to school again. I can sure empathize with that! But just take one day at a time, okay? Right now you've got a lot on your plate each day. Use all your energy to fight this bug and heal up. :hug2:

[pberggren1]

Thanks Jack and Sangye. I just am affraid right now of the prognosis of my situation. I am also affraid that when I get better if I try and go back to work or school that I will flare again like the last 3 times. But then again there is no way of predicting a flare. I will try and keep my chip up and stay positive.

[Sangye]

This might help: It occurred to me that they did so many cultures of your bacteria and must have checked the antibiotic "sensitivity" for it. That determines which antibiotics are effective for a particular bug. It also shows if the infection is resistant to a particular antibiotic. The fact that they've got you on 3 antibiotics means each one is effective for your bug. I think there's good reason to be hopeful that you'll get over this infection. And Wegs? Well, who the heck knows what wakes that dog up! But right now he's sleeping. zzzzzz:sleep:

[pberggren1]

This might help: It occurred to me that they did so many cultures of your bacteria and must have checked the antibiotic "sensitivity" for it. That determines which antibiotics are effective for a particular bug. It also shows if the infection is resistant to a particular antibiotic. The fact that they've got you on 3 antibiotics means each one is effective for your bug. I think there's good reason to be hopeful that you'll get over this infection. And Wegs? Well, who the heck knows what wakes that dog up! But right now he's sleeping. zzzzzz:sleep:

You are absolutely right Sangye!

[Hopeful]

Hi malin,

I've been lurking here trying to find out how "odd" I am disease-wise compared to others. My apologies for not sharing. I work a standard 35 hour work week as a librarian. This involves computer work, a lot of standing & stair-climbing, pushing trolleys of books and just carrying heavy loads of books. After work I go do the shopping for essentials (2-3 days per week for fresh fruit/veg), then I go home and cook dinner, do laundry, the dishes, minor cleaning, then collapse in bed. Thankfully my boss is very understanding when it comes to appointments. I was diagnosed March 2009 and have had one or 2 flares, the latest of which was in July when my Dad died. I have been rather tired since then, but getting enough sleep seems to help. I only took time off work the day after my intraveinous chemo. So all in all I guess I'm doing okay, but I'd love to cut back to half-time for a little while and do something fun!

[elephant]

Hi Hopeful, sorry you lost your Dad. When you feel like it,I like to hear your story on how it (WG) began. Do you see a Wegeners Specialist? I too noticed Hopeful that I feel better when I rest. My sinuses are better when I nap. Maybe you could cut back half time, talk to your boss about it. Are you having joint pain?

[Sangye]

Hi Hopeful, nice to meet you. I have the same questions as Elephant. I'm sorry to hear about your Dad. It seems to be very common that stress triggers a flare. :sad:

I'm amazed at how well you're doing. A big day for me is just going grocery shopping using an electric cart. It takes me a day or two to recover! Make sure you get plenty of rest-- that can lull the Wegs dog to sleep.

[brocky99]

I got made redundant just as the symptoms were starting to cause problems got diagnosed 4 months later so havent been back to work since. We also ran a pub for 2 yrs before i got made redundant but after i got diagnosed we decided to give that up as well it wasnt fair on my other half, the plan was when i got made redundant i was going to run pub and he was going to go back to work, but it didnt go to plan. But i was so tired all the time that he seemed to be doing all the pub work and looking after me and it was taking his toll on him so we gave notice in the pub and we was out 6 months later. I am now a stay at home mum which I love but I have worked 2 jobs from being 16 and I am missing work big time, but I know deep down I wouldnt be able to work at mo. Plus now I have started dialysis I cant see any firm wanting to take me on then give me several hours time off each week for it.

[Jack]

I have met lots of people who manage to work while on dialysis either by doing it at home or by going to evening sessions at hospital. I was on CAPD so was able to work and just spent an hour at lunch break in the medical room. Of course, you need to feel well enough to work first. ;)

[brocky99]

If I was still in the job i was before i got made redundant jack i know it wouldnt be a problem cos i worked for them for 13 yrs and it wasnt a problem for u because u had been with the same company for years but i just feel at the mo if i was able to work and with the current climate if i was to go for a full time job and then have to ask for an hour off every other day so that i could get to dialysis for the latest 6 o clock i would be overlooked for someone who could work the full hours if you know what i mean. When they told me I had to do dialysis i looked at all the options and decided haemo was the best option for me at the mo because i havent got a spare room to do it in which i could keep clean and tidy, what with 2 kids and 2 dogs the house isnt always as tidy or clean as i would like it to be all the time and i havent even got any space to store the fluids etc. Plus i really didnt want the kids to have to see me on dialysis 4 times a day, the nurse said they would get used to it and the big one probably wouldnt bother but the little one doesnt always understand cos he is only 8 and he has struggled last few years to get his head around his mummy being ill. It really upsets him at times. I do evenings and there are a few there who work so I know it can be done but on speaking to them they have been with the company for a long time. I am sure in time when i feel upto work i will be able to work round dialysis if possible, so long as i can get work local to the dialysis centre. I think at the mo though the kids are enjoying me being at home for them. They both went to a child minder from 8 weeks old so they have never had me taking them and picking them up from school apart from last 2 years. It is just my opinion at the mo that i dont think anyone would be willing to take me on a mo but maybe when things start to settle down it will be a different matter. I am just bored being at home all day i was always on the go before this disease struck so i find it hard to sit and do nothing although today i have spent most of it once i got up that is on the computer so i have done nothing today at all which i dont do very often but i do enjoy the fact that i can occasionally. It will be even better next week when both kids are back at school, 1 because i will have peace and quiet again and 2 they dont half make a load of mess lol. I spend most of the day moving what they have had out or teling them to move it. Kids hey.

[Jack]

Yes, I take your point and I'm sure you are right and there is still plenty of discrimination against people with medical needs. But things change and who knows what the future will bring your way.

[charitygolfdays]

Ju has just had her third session of chemo; today (the day after) has been a bit tough for her. Feeling, but not being sick, wanting to eat but feeling sick, eating a little but feeling low. etc etc.

As far as work is concerned, Ju is now off work for at least the next six months. Ju works as a practice nurse in a doctor's surgery so weg's doctors don't want her anywhere near people who are ill.

It's a bit tough as Ju has hardly ever had a day off sick since leaving school! I have been threatened with divorce if i bring home a jigsaw puzzle for her to do!

Jase

[Hopeful]

Hi Hopeful, sorry you lost your Dad. When you feel like it,I like to hear your story on how it (WG) began. Do you see a Wegeners Specialist? I too noticed Hopeful that I feel better when I rest. My sinuses are better when I nap. Maybe you could cut back half time, talk to your boss about it. Are you having joint pain?

Hi elephant. My wegs story begins in June 2008. Caught a resistant form of pneumonia from some idiot on the bus. Thought antibiotics had knocked it out but was still unable to exercise without becoming breathless and my sinuses were kicking up worse than usual. (I have since learned that wegs can lie dormant for years, kicking up occasionally in the sinuses acting like an allergy or just the sniffles.) Anyway my GP treated me for sinus infection which never went away after many rounds of antibiotics. I then noticed my ear was full of fluid and couldn't hear well and went to an ENT. He put in a grommet and the hearing improved. By September I still had a little cough and wasn't able to function well in my new job. GP sent me for a chest xray and said I had pneumonia again/still. That finally got cleared up, then in December I noticed I had trouble walking/standing. Couldn't walk as much as before or stand as long without becoming tired. I had started another new job in November but by mid January I couldn't even get myself dressed, I was in such pain I was in tears most of the time. Still managed to get through work though and would go home and collapse in bed. All the time my GP was telling me it was arthritis. He refered me to a rheumatologist who couldn't see me for another 6 months. I kept pestering the nurses at the rheumys and they suggested a locum rheumy. The locum could see me right away and after 5 minutes she said it looks like wegeners. Did all the tests incl. kidney biopsy to confirm. Doctor (registrar - like resident or intern) at the renal clinic did the biopsy on April 1 2009, cyclophosphamide begun April 23 - 6 pulses. Put on Azathioprine for about 6 months, but it seemed to stop working (I may have been flaring). Started seeing a new (3rd) GP who recommended an immunologist. The immunologist believes I was undertreated with the cyclo and has switched me to Methotrexate. Throughout the whole thing I have had joint pain. In one foot it feels like the joint actually dislocates and I have to put light pressure on it to pop it back in. Scans just show arthritic type blood pooling. The Registrar says to take ibuprofen. I prefer paracetamol with 8 mg codeine (Panadeine Extra for the Aussies out there). But I only take one about 3 times a week. Cutting back on work is not an option. Any other suggestions for the joint pain? Sorry this is so long. As you know it is a long road from symptoms to remission and I hope to get there soon.

[Nancy]

Hello everybody -
Work..... Well, I have had my Dx of WEGS for over 14 yrs. Initially I took 2 months off upon initial Dx due to chemo, fatigue, pred and just tired of coughing.. I was a Registered nurse at that time - in school for my Master's and working Home health as a director with lots of call time requirements and then on the weekends - working in ICU at the local Level 1 trauma hospital. Since then I have not missed a step - finished Master's, finished raising 2 girls, married/divored, etc...until April of this year. The WEGS changed from lung focused after 14 yrs to systemic in Nov 2009 and then settled in my sinuses :thumbdn:. I was completely off work for about 1.5 months and am slowly working back into more of a FT/moderately heavy part-time position as a Nurse Practitioner in a correctional setting (Adults and Teenagers). I am trying to watch exposure - but as a healthcare professional - there is only so much you can do.... I agree with Hopeful above - there is not an option to "stop" work for me... the backlog for disability in the State of Kansas is approx 3 years. Enough people already do not understand WEGs - it is hard to describe the issues that we all go through and how that might require disability status... After tx with RTX - more energy - and feeling free of most symptoms/issues - 75% of the time - except for burning nares... boy, it reminds me of going into a highly chlorinated pool and getting a snoutful.... When I am tired, i try to rest. If really bad, the jobs that I have flex my days - I am lucky most people do not like working with the "criminal types".. :lol:
I consider myself pretty lucky overall. It is amazing how the WEGs can change your life.... good and bad....

[Sangye]

Hopeful, I'd bet my money that you never had pneumonia in the beginning...sounds just like Wegs affecting the lungs. I've been diagnosed with "atypical pneumonia" several times, and it never responded to antibiotics, either. It turned out to be Wegs every time. Lung involvement typically progresses slowly, so it could take months to become obvious.

I've had the joint pain also. For me, it's an indicator that the disease is not fully under control. After finishing 7-8 months of ctx and pred initially, the joint pain continued for the next 2.5 years, even though I was on Cellcept for most of that time. The pain wasn't as severe as pre-diagnosis, but it was pretty awful. Two rounds of rtx have finally gotten the Wegs under control for the first time in 4 years, and lo and behold--I don't have the joint pain. It's possible that the mtx isn't strong enough for you. How experienced is your immunologist in treating Wegs?

[DEE]

I've had the joint pain also. For me, it's an indicator that the disease is not fully under control. After finishing 7-8 months of ctx and pred initially, the joint pain continued for the next 2.5 years, even though I was on Cellcept for most of that time. The pain wasn't as severe ..........

thanks Sangye the above has answered a question i have been meaning to ask I still have quiet abit of joint pain especially ankles and wrist and shoulders infact all joints and ithought it was just me thst after all the treatment ive had it should have been alot better by now

[jola57]

I am lucky to work for myself with a wonderful business partner. After initial diagnosis 4 years ago I took off just a couple of weeks and a day here and there when needed. I work full time and some nights, for strata council meetings. As a realtor and property manager I deal with people every day but have been lucky to have only a couple of light sniffles. There were days that I was so tired that I just closed the door to my office and lay my head on the desk and rested. Thankfully I am feeling great and am able to do many things I love like travel, even if I have to use a :thumbsup:cane. I will continue to work full time for as long as I can. Actually I workd 2 full time jobs, I am also my husband's office manager and do medical billings. I consider myself lucky that the meds did not mess me up and that I tolerated them so well. I am on 4mg of pred, its been over a month now but I think that I will stick with it for another month then go down by 1/2's. I will be on mtx 10mg for the next, second, year. I am sure that not having the pressure of having to be at work or worry about finances or disability has contributed to my overall wellbeing. As a society we have a long way to go in order to put people above all else such as productivity or money. governments must put more attention on helping ill or disabled persons continue in their job by financing the sick off days for the employer who in turn would not feel the pressure to fire the employee. Well that is my world thru rose colored glasses

[pberggren1]

I'm glad you were and are still able to work with Wegs Jolanta. Knowing that other Weggies have it either worse or better than me helps put things in perspective for me. Years ago I thought of getting into real estate. At one time I even wanted to be a doctor or architect.

[Jack]

Hopeful - do not take Ibuprofen, it does not mix well with the other drugs we take. I am now using Tramadol and it seems to help, but I use the slow release type and started on a low dose. First time I tried it I went straight in on a high dose and had to stop because I did not tolerate it at all well.

I agree with the others that the joint pain can be an indicator of Wegs activity, but a lot of us seem to have foot pain in spite of the disease apparently being well controlled. I don't think this aspect has been investigated or documented yet. I've had every test in the book without finding what is causing it.

[elephant]

Hopeful, like many of us stated ...I too believe that joint pain is a indicator that your Wegs is not controlled. I would seek a Wegeners doctor soon. You deserve the best care and once you find a Rheumatologist that seer's many wegeners patients you will notice the difference. Sorry you have to work through all this. Keep us updated.

[JanW]

To add to what Jack said, I continue with the pain in one ankle even though my blood work shows a clinical remission -- however, after a short course of steroids (I don't take them as part of my WG treatment unlike many here) it improved quite a bit and my doc decided to up my mtx, which has really made a world of difference and proved to him (and me) that I not only know my body, but that this symptom was tied to my WG. I quite literally woke up one day with horrible foot pain, that has lasted a year now. I was diagnosed back in January. One thing that aided in my diagnosis and having docs take me very seriously is my saddle nose. Not something they see every day, or really ever. The only other times I have ever seen one (and I live outside of NYC in a city of 40K) was at the Vasculitis Foundation's symposium.

All of this is to simply say that it can take a lot to get to get the meds right to a dose that is effective but not toxic. I agree with Sangye that it's probably less likely that your dormant WG had a trigger and more like that the stuff they are saying that you had (in my case it was asthma) you in fact never had, and it was WG all along.

I will also say that my joint pain disappeared -- completely --- within a month of being on mtx, which was one of the first signs that the drug was working for me.

[pberggren1]

I just wanted to add that Ibuprofen is hard on the kidneys as well.

[Nancy]

Don't forget that Long term moderate to high dose Ibuprofen use can also result in High blood pressure or worse than that Gastrointestinal bleeding/ulcers....

[drz]

Hopeful - do not take Ibuprofen, it does not mix well with the other drugs we take. I am now using Tramadol and it seems to help, but I use the slow release type and started on a low dose. First time I tried it I went straight in on a high dose and had to stop because I did not tolerate it at all well.

I agree with the others that the joint pain can be an indicator of Wegs activity, but a lot of us seem to have foot pain in spite of the disease apparently being well controlled. I don't think this aspect has been investigated or documented yet. I've had every test in the book without finding what is causing it.

What drugs, herbs, supplements etc should we generally avoid when being treated for Wegener's disease? I used to take a number of supplements and herbs for diabetes symptoms before I was diagnosed with Wegener's. I know I need to avoid metformin and altace now but wonder what other drugs and supplements I should avoid.

My joint pain went away when I started treatment for Wegener's. I am still on 30 mg Prednisone and no joint pain has returned yet. I do have occasional cramps in legs and hands but don't know if this is related to Wegener's disease or some of the meds I am currently taking.

[elephant]

It could mean low potassium, calcium, magnesium. How often do the docs check your potassium level?

[jola57]

JanW, how much mtx are you taking? My left ankle is my biggest problem. The pain is constant but is seems everywhere not just the joint but the nerves and muscles around it as well. Many times it just gives out and the pain is so intense that I can only hobble on my right, simply can't put any pressure on the left. I am on 10mg mtx because of my liver tests.

[jola57]

drz, I remeber having cramps for a number of months before they finaly went away, It took 50 to 60mg pred and ctx 150mg before they went away. I learned very quickly for example not to stretch my legs in bed at night at all, I had huge cramps in my calf and toes. I also craved bananas and tomatoes which are high in potassium.

[Hopeful]

Hopeful, I'd bet my money that you never had pneumonia in the beginning...sounds just like Wegs affecting the lungs. ... Lung involvement typically progresses slowly, so it could take months to become obvious.

I've had the joint pain also. For me, it's an indicator that the disease is not fully under control. ...Two rounds of rtx have finally gotten the Wegs under control for the first time in 4 years, and lo and behold--I don't have the joint pain. It's possible that the mtx isn't strong enough for you. How experienced is your immunologist in treating Wegs?

Hi Sangye,

Thanks for the input. They did tests and I did have pneumoniasis aureus (I think I've spelled it right). Despite the fact that I had difficulty shaking the pneumonia, I seem to have difficulty catching the flu, colds, etc. People around me drop like flies and I have no problems. Go figure! That said I do have "mild scarring" of the lungs according to my last scan, and I have started coughing a little bit in the past 6 months. A little tickley in my chest and sort of breathless. I know I could be bleeding in my lungs. I'll raise it with the immunologist in a week or so.

I'm hoping the joint pain will go away soon. Blankets on my feet are causing me the worst pain problems right now. Kind of hard to avoid them in the winter. I'm doing 20 mg mtx once weekly and 10mg pred daily. When I first started the mtx the pain disappeared and I thought "Hallelujah" but it has reappeared and is holding a a steady level. The doc said if the mtx doesn't work, it will be rituximab or back to the IV higher dose of cyclo. My immunologist has treated 3 people that I know of - he has 2 offices and is in Canberra only 2 days a week, but is a Professor/researcher and is highly regarded. But I'm always on the lookout for someone better! Thanks for letting me know that the pain will go away. Now what about the 20 lbs I've gained??? ;)

[JanW]

Hey, Jola. I'm taking 17.5 mg/oral per week. I thought that 15 mg was the lowest therapeutic dose, but then again I don't take pred so maybe the dosing is different. I noticed a difference with the ankle first with the pred (as in it felt 90 percent better than it did before I took the medrol pack) and that was the reason for raising the mtx. I would say I've lost about 30 percent of that relief so will talk to the rheumy next time about perhaps bumping the mtx up again.

I never had constant pain (only weight bearing) and I probably haven't taken prescription ibuprofen for it since Feb/March (shortly before starting on mtx). I have had a LOT of physical therapy (2x/wk since May, maybe) and that has helped, although clearly there was a big part of it that was inflammatory that seemed to be 'cured' by that brief hit of pred.

[Sangye]

I am still on 30 mg Prednisone and no joint pain has returned yet. I do have occasional cramps in legs and hands but don't know if this is related to Wegener's disease or some of the meds I am currently taking.
High dose pred causes you to lose calcium and magnesium and potassium is lost through the pred-sweats. Unless you're taking a drug that depletes potassium (eg lasix, a diuretic), you can just eat a banana, orange or potato to replenish potassium. It's abundant in many foods. You should be taking a calcium supplement while on pred, and you can add some magnesium if needed.

[Sangye]

Hi Sangye,

Thanks for the input. They did tests and I did have pneumoniasis aureus (I think I've spelled it right).[QUOTE]
LOL-- I totally lost that bet!


[QUOTE]
My immunologist has treated 3 people that I know of - he has 2 offices and is in Canberra only 2 days a week, but is a Professor/researcher and is highly regarded. But I'm always on the lookout for someone better! Oh, that is not good.... Please look for someone with more experience. The Wegs specialists see hundreds of Weggies.

[Sangye]

I don't know why that last post didn't do the quote right. I'm wiped out... super long day.

[pberggren1]

I notice other people have the same trouble most of the time.

[LisaMarie]

i am a nurse ...i was playing the misdiagnosis and they discovered trachostenosis in dec 2009...i was able to transfer of the med/sur/icu unit to a desk job working32hrs a week then in may got WG confirmed and now work 24-32 hours and have a great boss.....very fatigued but have 4 kids and a husband....three dogs which arw my other babies to care for....so at timez it is rough but i deal..i can not take pain meds cause they knock me out so I mediate nd deal....not sure how much longer i can do it ....so i guess with allof us it is different ....i did sleep all one weekend and felt a little better:biggrin1

[jola57]

Thanx JanW. I was on 15mg mtx but my rheumy took it down to 10 because of my liver behaving badly. My foot is worse when I put weight on it, but many times when I get to bed, there is no position that helps to stop the burning pain, it just goes away in about 1/2 hour. It doesn.t happen all the time. I have wanted physi but don't know how it would help if it is neural pain.

[JanW]

Is there some reason s/he won't put you on another drug like cellcept, Jola. My understand is that mtx is by far the hardest on the liver -- believe it or not, when it first came out docs used to require regular liver biopsies just to make sure it wasn't permanently damaging the liver (a doc said this at the conference).

Of course, if 10 mgs is actually controlling your symptoms, then good for you. My ankle continues to improve, and I believe that is through the combination of PT (which is getting back the range of motion that was severely restricted because of pain) and the mtx controlling inflammation. But I never believed my pain was neural.

[drz]

It could mean low potassium, calcium, magnesium. How often do the docs check your potassium level?
They check these frequents and give me calcium supplement, some vitamins and fosomax to prevent fractures. My levels are are usually borderline low.

[Sangye]

If they are borderline low, you should be taking supplements for them.

[elephant]

I agree with Sangye. :)

[woodsman1972]

I also work as an EMT in the health care field. Luckily I am a manager of a private ambulance transport service, so riding on the ambulance has been halted (I was only recently diagnosed and am still in the first couple of months of treatment). I can tolerate about 6 or 7 hours at work, then I hit a wall at about 3pm each day. Both feet swell up to the point of severe discomfort, and I have to get home to lie down. My bosses have been pretty understanding. Anybody else get the swelling of the legs/feet? My docs all say it just a side effect of Wegs. Want to know if it is something that will dissipate with successful treatment or if it can become a chronic problem.

[jola57]

Woodsman, once your Wegs in under control and you are no longer taking high doses of steroids or ctx, you should get your energy back and hopefuly the feet stop swelling. /the swollen feet part may be harder to get around.

[Sangye]

Woodsman, swelling feet can be due to active Wegs and/or pred, but it can also be due to the profound adrenal depletion caused by Wegs and pred. That might or might not improve once you get the Wegs under control. One clue that the swelling is due to adrenal depletion is that it will be worse with high stress.

[Sean48]

Is anyone at work while still on 30+ pred and 150 cytoxin? I still get weak after being out a couple of hours or doing basic chores around the house. Not enought to have to nap or anything, but weak in the legs and a bit wobbly. I have been out of work since the end of June. Some days I think I should be able to go back (even though I don't want to), but then when I get tierd I wonder how I could. When I worked, I got up at 5:00 and left for work by 6, then drove an hour, worked 9 hours and came home, so it is a 12 hour day. To do it now just getting ready I would be tired by the time I left. I would have to shower and have lunch made the night before, but still have to get ready and drive ect ect......I have a desk job and not alot of pressure. I am pretty lucky actually. My blood work and last lung scan were good but I know I am not in remission.. Do the drugs actually put me in remission? Am I correct to say the blood and lung scan do not reveal remission? So how do you know when you feel good enough to go back to work and not be back home sick in a week? Is that the chance we take????? I just know 12 hour days are not for me yet.

[Sangye]

Sean48, it doesn't sound like you're able to work 12 hr days yet! You really need your strength to heal or you can drag it on for a long time.

Yes, the drugs put you into remission, though it may take many months to get there. Blood and lung scans are not sufficient to demonstrate remission. Reduction/ elimination of symptoms carries a lot of weight. Here's the BVAS scale that the Wegs docs use to determine Wegs activity. I find it useful to score myself every so often to see how I'm doing.
Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score (http://vasculitis.med.jhu.edu/research/bvas.html)

[Doug]

Too soon, too long, too hard, too bad! The worst thing we can be is impatient with the healing process.

If bosses or those things in Human Resources Directors chairs force the issue, you may have to work out a compromise, with your doctor's involvement to guide you along on just what you should be able to do or shouldn't try yet.

It does seem, sean48, that your work condtions are ideal for a weggie, but that commute makes for a longish day. Do you feel comfortable with the drive? I personally can't relate to it, having lived within five minutes (maximum) of my job, so would suggest you pay close attention to your body while maintaining such a load, and reacting quickly to any changes that suggest you are over doing it.

I know I had days where even computer work proved a bit much.

[Sean48]

thanks Sangye and Doug.

My ideal situation would be to stay out of work for another 1 1/2 years and then ask for a layoff with full pay for 6 months and slide into retirement. That is a very slim to none chance. ha ha......I agree with the 12 hour days and that will be one of the reasons I'm sure my doctor will keep in mind when keeping me out of work. I appreciate your input. It keeps my own thoughts in perspective which I agree with. When I went to my Rhumey last week, she said at least 3months. I just wonder where she got that number and why, but I never thought to ask. She will be very supportive with keeping me out as long as its good for me. She has been my rhumey for years and knows me well......She was a big part of convincing the surgeon to do the lung biopsy to diagnose me.

[Jack]

My ideal situation would be to stay out of work for another 1 1/2 years and then ask for a layoff with full pay for 6 months and slide into retirement.
How old are you Sean48? Unless you are nearing retirement age you may be writing yourself off too soon. The situation you describe above is what happened to me at the age of 50, but that was after 20 years of full time work in spite of periods of absence due to Wegener's problems. You are still in the early stages of treatment at the moment and there is no reason to think that you will not gain some level of remission as the majority do. You may then find that you feel more able to hold down a full time job. It took me 4 years to gain a good solid remission, but even then, I went through periods of feeling reasonably well.

[Psyborg]

Is anyone at work while still on 30+ pred and 150 cytoxin? I still get weak after being out a couple of hours or doing basic chores around the house. Not enought to have to nap or anything, but weak in the legs and a bit wobbly. I have been out of work since the end of June. Some days I think I should be able to go back (even though I don't want to), but then when I get tierd I wonder how I could. When I worked, I got up at 5:00 and left for work by 6, then drove an hour, worked 9 hours and came home, so it is a 12 hour day. To do it now just getting ready I would be tired by the time I left. I would have to shower and have lunch made the night before, but still have to get ready and drive ect ect......I have a desk job and not alot of pressure. I am pretty lucky actually. My blood work and last lung scan were good but I know I am not in remission.. Do the drugs actually put me in remission? Am I correct to say the blood and lung scan do not reveal remission? So how do you know when you feel good enough to go back to work and not be back home sick in a week? Is that the chance we take????? I just know 12 hour days are not for me yet.

I think we are in similar situations. For all that my involvement seems to be on the less serious end of the scale, I have serious issues with being very tired after about 3-4 hours of activity. And my job is also a desk job, though with some pressure I must admit. So far my job has worked with me without making me go on leave at least. I'm working mornings in the office then afternoons at home after a nap. Works out ok...though I do feel out of touch with working from home sometimes.

[malin]

Ugh! I had to make a very hard decision last week at work, had to tell my bosses I wasn't able to keep up with working full hour days any more. Everyday at 5 pm I would just feel as if I had rolled down about 20 flights of stairs :/ My whole body would ache and I had no energy left at all. And its not like my job is very hard, I sit at a computer all day!

It just feels so absolutely crappy and unfair that I'm 22 years old and can't even manage to work a full hour day when I work from home, in front of a computer! What kind of prospects do I have for a career in the future?

(Work is now going to hire another person to "help me out" and although that is kinda good, it will reduce my hours but also my pay and money is tight already, I feel so rubbish for not being able to handle this on my own)

Sorry for the rant I just feel incredibly low at the moment. :(

[Psyborg]

malin, have you tried taking a nap mid day? I'm in a similar situation, I work mornings at the office, then come home for a nap, then work the rest of the day from home. So far when I get my nap in I'm doing much better overall and am able to get them the hours they need. I may have to do otherwise later, but for now this has been a great help. Of course this assumes your employer is willing to work with you in this way.

[malin]

Hi Psyborg,

I work from home and I've tried taking a nap on my lunch break (1 hour) but it seems to have the opposite effect for me, just makes me even more tired! The best I can think to do at the moment is reduce my hours, always make sure I take my pred first thing in the morning (this helps a lot) then just try to keep going and struggling on, the worst time for me is after my lunch, especially if I've eaten as well.

Some days are better than others though, yesterday I had a very bad one, I was shattered and ready for bed at 7 pm! And that's even though I had a half-day at work and then rest + a short trip to the food store! :/

I find it quite hard to deal with coming to terms with this, I thought I had since I've had Weg. for over 6 years now but I'm having my first "big" flare now and it's brought all the feelings back again that I had in the beginning.

Another thing that makes it even worse is that because you can't really SEE that I am ill, people tend to think I'm making things up or "playing it up", if you know what I mean? Even my parents seem to think this sometimes and it's hard fighthing something without support from loved ones! :(

[elephant]

Malin, I went through the same thing at work. You have to do what is best for you. There will be people out there no matter how many times you tell them you are sick and don't feel good ...they just don't get it.:rolleyes1::confused1:

[Sean48]

Malin. I feel the same way about you working for less hours. That is a big issue for me if they want me to start back part time. I can't afford it.
I don't have a problem yet and don't know if they will ever suggest it. Lets hope it doesn't come up. the insurance company called yesterday for its biweekly update. They are in agreement I am not ready for work yet and am not even ready to talk about it until after my next appt with my rhumey which is Octobe 18th. So time will tell. Best of luck with your job. I can't imagine being so young and having these issues with work. Hopefully you will be one of the lucky ones and go in remission forever....Take care

[Sangye]

Aww Malin, I feel for you. I'm so sorry you're going through this. It's hard, but try not to extrapolate into the future. You're just as likely to get stronger again, once this flare is really under control. Remember, you've got youth on your side. A young body starts off with more vital energy and recovers faster. It's programmed towards healing. Once you're working a lighter schedule, I think you'll start to bounce back faster. Hugs to you-- :hug2:

[Psyborg]

I definitely get the "you don't seem that sick" thing. Thankfully my family believes me as they can definitely see I'm not right. But I know some folks at work are probably skeptical. Just remember that taking care of yourself is the primary goal here, everything else will come out ok in the end if you take care of your health.

Oh, and I do sometimes wake up feeling downright tired still. So I get where you are coming from there. My biggest problem without the nap is I can't think straight, I'm tired with the nap but seem to be able to think.

[jola57]

Malin, I'm sorry but I don't remember how long has it been since you were diagnosed. It takes some time before the meds kick in and start to work their magic. I don't know what your relationship is with your boss, but maybe giving him/her a printout of what wegeners is will educate them about the illness and why looking OK doesn't mean that your are OK. You are 22 so the prognosis is excellent for getting into a quick and lasting remission which I wish for you with all my heart.

[malin]

Jolanda, I got my diagnosis when I was 16 so I've lived with WG for over 6 years soon.
I am most likely having a flare, just waiting for docs to confirm it.

I had more bad news from work today, one of the account managers for one of my projects have contacted my project leaders and informed them that the company whose project I work on are not happy with my results.
I work with getting customer satisfaction interviews and in the last 6 months my work load went from 4-5 projects to over 23 projects and I am the only "rep" to work on these projects in Swedish.
The complaint they had was that they were not getting enough interviews, just many completed calls (after 3 tries).

I know this is an issue and I feel mortified about this since I have been stuggling to handle my work load so I have therefor not spent enough time on letting the phone "ring" so to speak so that people get a good chance in picking up the phone.

Will just have to wait and see what work says now, I just sent them an email explaining myself. Would just be my luck to get fired now? :/ Why does disasters always strike in a group?

[woodsman1972]

I feel for all of you. I, being recently diagnosed and going through a flare, am still reeling with all of the changes to my life. I have 3 bosses. Two of which are very understanding of my situation, and one who is a complete prick (sorry for the vulgarity, but it is highly appropriate). By 3pm every day I am wrecked! I can tell some of those around me are skeptical, and I don't know how to explain these symptoms. You just feel like you can't exert any more effort into anything. My brother and his wife (who have been kind enough to let me stay with them during my initial flare) are both marathon runners and "health nuts". He keeps suggesting that I exercise. I show him how the Pred has literally taken half my muscle mass in just two months. Literally. The areas where I was defined are now sagging on my body. My legs/chest/arms have shrunk. Standing up and walking around is a chore. It is very hard to explain to those not experiencing it. I am lucky in respects that so far my lungs/sinuses don't have any chronic damage, but in terms of "lifestyle", this is the pits. So hang in there all of you. I'll do the same. I am very glad to hear that these problems are normal for Weggies. Damn the Man!!

[Hammy8241]

I work with getting customer satisfaction interviews and in the last 6 months my work load went from 4-5 projects to over 23 projects and I am the only "rep" to work on these projects in Swedish.
The complaint they had was that they were not getting enough interviews, just many completed calls (after 3 tries).

I know this is an issue and I feel mortified about this since I have been stuggling to handle my work load so I have therefor not spent enough time on letting the phone "ring" so to speak so that people get a good chance in picking up the phone.

Will just have to wait and see what work says now, I just sent them an email explaining myself. Would just be my luck to get fired now? :/ Why does disasters always strike in a group?

Don’t you guys have discrimination laws over there. You have an illness. It is quite hard to get rid of someone who is ill in the UK, even if they are not able to do the job. A person would have to go through interviews with personal, company medicals, discuss/agree what they are capable of doing. Looking into alternative jobs within the company etc. The only exception I know is if that person has not been employed for a certain period (1 or 2 years I think). Normally a compromise is agreed. Union member?

It looks to me that having increased your work load from 4 to 23 projects, they are not giving your illlness a chance which is hardly fair to you. Maybe you need to consider and write down things from your side and see if you can turn what seems to be a negative into a positve when you have a meeting, which I presume is the next step.

Hope it goes well for you.

[Jack]

As above.
If they are increasing your work load in spite of your illness this could amount to constructive dismissal. Make sure that everyone is aware of your condition and how it affects you. They will then have to work with you to find a working solution to the problem - reduced hours, workload or even a different position at the same rate of pay, but they can't fire you for being ill!

[Geoff]

Hi Malin,
So sorry to hear your news. What I would suggest is that of the 2 issues mentioned, your 'flare' and your job, you must put yourself first. I'll leave it to the other guys who know more about industrial law and the like to help you through that issue, but unless you get yourself back and into balance physically then you are fighting an uphill battle. Deal with one thing at a time. Easy for me to say i know but get yourself checked out. Did you say this was the first flare since your DX 6 years ago? Are the main syptoms the same? Keep us up to date. Best Wishes.:smile1:

[elephant]

Malin sorry to hear the bad news, you body does not need the added stress...I agree with Jack and Hammy and everyone else.

[drz]

I can't imagine having to try to work in my present state of health. I get exhausted and winded from walking 50-100 feet. Worrying about job performance and job security would be a horrible unecessary stress that certainly couldn't help with recovery from Wegener's granulamatosis. If you have a good disabiity insurance coverage it should NOT be to hard to find physicians that would support a disability claim. Most policies only pay for a year or two regardless of what they claim in their policy but that should buy some time toward recovery. Sometimes early medical retirement is also a good alternative.

[malin]

Thanks for all the support guys!
Work has given my a warning and said it's unacceptable behavior, no matter what I can't "rush" through calls, which I can understand and I do know what I've been doing is wrong but bleeh, what the heck did they expect me to do when I had lorry loads of work each day! Idiots! :/


Did you say this was the first flare since your DX 6 years ago? Are the main syptoms the same? Keep us up to date. Best Wishes.:smile1:

Geoff, I was diagnosed when I was 16 and am 22 now so 6 years yeah, I think I've had "small" flares but nothing as persistant and "strong" as this, usually a round of pred would have me feeling ok again but it doesn't seem to work this time. My main symptoms are not really the same, except for fatigue. Before diagnosis was made I had sever ear pains/crusting in my ear canal and total deafness on both ears, also had no energy what so ever, I couldn't even go the the loo on my own!
Atm I feel really tired, not just mentaly but my body feels "heavy" and tired as well, got joint pains and "shooting" pains everywhere every now and then.

[Sr.Roc]

i work about 48 to 56 hours in 5 day work week. just found out had wg in july of 2010 on 60 pred a day and i my 3rd tretment ctx. i was out of work for about 28 days and had to go back could not stand to be home. i find it tack my mind off of the wg 's. do a lot of driving for work and alot of turning wrenches. legs and hands hurt by end of the week but that is fine cant let it rule your life. work nows i have it and are good with the days off

[DEE]

i work about 48 to 56 hours in 5 day work week. just found out had wg in july of 2010 on 60 pred a day and i my 3rd tretment ctx. i was out of work for about 28 days and had to go back could not stand to be home. i find it tack my mind off of the wg 's. do a lot of driving for work and alot of turning wrenches. legs and hands hurt by end of the week but that is fine cant let it rule your life. work nows i have it and are good with the days off
Please be careful i was just like you last year....life goes on .....and am now reaping the consequences ..... when i should have rested and let the treatment work i was busy just been me i have now been off work since jan 10
i am not telling you this to scare you but i wish i had listened to people and taken their advice sooner
please take care DEEx

[Jack]

I've been there too - took on a really demanding position with lots of pressure and after a few months I went into melt down with a major flare. You need to be kind to yourself while not giving up completely.

[Geoff]

Atm I feel really tired, not just mentaly but my body feels "heavy" and tired as well, got joint pains and "shooting" pains everywhere every now and then.

As you have mentioned Malin, your current syptoms are different to your initial DX 6 years ago, but they do sound very similar to what I have experienced. My fall back position now is to asume that everything is WG related. Dont put off that check up any longer. Getting back to your original post, my employer has been very supportive, even tho' I had only been employed there for just over a year when first DX. I do a lot of driving but can spend weeks at a time just on the computer. WIth regards to your wrist pain, have you got one of those mouse mats with the wrist support? Following on from what Dee and Jack have posted, there are times when you have to not only listen to your body, but be KIND to it. I find that 1 or 2 days in bed can turn things around, but only if you are not having a 'flare'.

[jola57]

No job is a secure job. Malin, I don't know how many others could do your job (know Swedish) and why did they not see what your work load was like. Do they have a specific time for each call? and how many calls is it possible to do. I am sorry for the additional stress, just keep in mind that you shoulld not under any circumstances run yourself down. I guess the bosses had to give you a warning, hopefully they can understand from your email the reason for the slowdown.

[Sangye]

Just please keep in mind the effects of pred and stress on your work:

http://icanhascheezburger.files.wordpress.com/2010/09/3ab6ceee-6151-4b86-b074-a4e55fb5be60.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

[elephant]

That is hilarious!

[jola57]

Thats me when I was little and had to drink milk

[Jack]

Some good news for prospective employees with disabilities in the UK. The anti discrimination legislation is being strengthened and part of this means that employers will not be allowed to ask questions about medical conditions at job interviews. So if you have Wegener's and still look well you should have less difficulty obtaining a position if you feel up to it.
BBC News - New equality rights in workplace come into force (http://www.bbc.co.uk/news/business-11446650)

[elephant]

That is great news!

[Minneapolismark]

I am (or was) an IT Director for a major healthcare network. I ran the project office that oversaw the major capital investments and development projects the company undertook. The job requires long hours, lots of stress, lots of walking and driving between facilities, crisis management, etc. So, I don't see me getting back into the executive world again any time soon--maybe ever.

Before that I was a strategic planning consultant with my own business and traveled the world, blogged and wrote technical books.

My disability insurance defines disability as suffering a 20% income loss due to illness or injury. It also specifies that I have to be able to work in my chosen field. I guess that makes me lucky. So I may well be on permanent disability. I haven't gotten that figured out yet. I don't like the thought though. I really liked my career. My team was helping to build a children's hospital and that was very important to me.

My lab tests are all excellent right now but I still have symptoms. The biggest symptoms are shortness of breath, confusion, memory loss, random pains, and exhaustion. I hope to be fully recovered but that doesn't seem to be happening.

So I am not currently working and am not sure what career I will eventually return to.

I am now in default on my mortgage but my new wife has a house, so all is well. It is better to be alive than financially stable.

I will say that it is vitally important that you not give over control of your life to anyone else, if you catch my meaning. You need to decide and act for your won benefit. No one else will.

[Sangye]

Mark, it's much too early for you to give up on your goal of working again, much less in your beloved field. I haven't been able to work for 4.5 years (since dx) and I still haven't given up! Dr Seo told me today he has full confidence that I'll be able to work as a chiropractor again.

I'm glad you have the safety net of disability insurance right now. Take the time you need to recover and heal. :smile1:

[Minneapolismark]

Oh I'm not giving up on anything! At the same time I'm a strategic planning professional! :rolleyes1: This means that I like to have short-term, intermediate, and long-term plans along with contingencies.

So, looking at a two to five year horizon, I believe it unlikely that I will return to corporate leadership. That will place me at between 55 and 57 years of age, which will further decrease the chance of senior leadership. So back to my real love which is writing, blogging, researching, consulting, and public speaking.

I'm not giving up on anything, but as a chess lover you modify the game depending on the way the board is shaping up.

Besides, I am quite convinced that the extreme stress of my job coupled with my divorce caused my flare up.

So I am not giving up on anything but adapting!

[Sangye]

A strategic planning professional with Wegs-- a completely unpredictable disease..... LOL I'll just say that it's wonderful that you're willing to adapt. :laugh::blink:

[Minneapolismark]

Strategic Planning is all about the unpredictable!!! If things were predictable you wouldn't need an adaptive plan!

[Jack]

Agree with Sangye.

It took me 5 years to get on top (?) of the disease, but then I had many years when I could pretty much function as usual. I was always a bit of a couch potato anyway! :wink1:

[elephant]

I won't go back to working as a Clinical RN, too stressful. I am thinking of doing something less stressful....flower or pet shop sounds like heaven to me.

[Sangye]

Yes, the stress thing is a major concern of mine, too. (LOL I get stressed out thinking about it) While I loved being a chiropractor, running your own business and taking care of patients is very stressful.