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Brooke
01-31-2010, 07:15 AM
Just wondering what everybody on here can "do" and "can not" do on an everyday basis due to their wegeners. Such as activities of daily living.
I work Mon-Fri from 8-5, I work at a computer and my dad is also my "boss" and owner of his clinic. So I have it pretty easy when it comes to going to doctor appointments and what not. I graduated college with an elementary and special education degree. However, I was not able to go into that field because my voice was always gone. This was obviously before I knew I had wegeners.
I have a 3 yr old little boy that keeps me and my husband pretty busy as well.
I do not work out, I need to start though. I used to walk on our treadmill every once in a while but nothing too consistent.

pberggren1
01-31-2010, 07:23 AM
For me right now and the last few months have been a little rough on me. I've had a lung infection and a couple of sinus infections over the last few months.

When I am feeling really good I can do quite a bit although by the end of the day I am quite pooped. On a good day I can clean house for maybe an hour in the morning and then go shopping and running errands and then do the same thing in the afternoon. If I had a regular job that wasn't too physical I could probably do that all week as well.

When I am having bad days I can bo very little and even just taking care of my day to day hygein like irrigating, showering, cleaning teeth, and shaving can be exhausting.

Doug
01-31-2010, 08:06 AM
Let your body "advise" you, Brooke. Clearly, working at a computer (I did the same thing before I retired) makes it possible to work with the least complications for you. The treadmill is good exercise. Better yet is swimming, if you have access to a pool and swim. Many hospitals have therapy classes in swimming pools either at the hospital or an available pool in the community. It's worth looking into. Especially where you are a young mother, I know any strength you have may be used just to manage your child, but exercise that is specifically for you can relax, strengthen, and give you the satisfaction of keeping up with and ahead of the nasty stuff WG can do to us weggies. The main thing is not to overdo it. That's where paying attention to what your body "advises" is vitl.

Jack
01-31-2010, 08:16 AM
Even though I was affected very badly in the early days and took a lot of damage, I recovered to the extent of being able to work full time, often away from home. I was also able to do all the usual home stuff like decorating and taking my turn with the cleaning and cooking. My condition has deteriorated a great deal over the past five years to the extent where I have difficulty walking and no energy to do anything much around the house. I also had to retire from work. I can now get up and get myself ready for the day and I can still drive, but preparing a meal or vacuuming a couple of rooms takes me to my limit.

deb
01-31-2010, 08:54 AM
Hi Brooke, I too lose my voice a lot but hope that will subside more now. I was able to retire from a 25+ year career in teaching, certified in secondary English, history, theater arts, video and technology classes. My last year I was working for a special education coop and did not have to talk much which helped as it was my first year being diagnosed with WG. My physical abilities are much more limited due mostly to weaking of my muscles from the pred. I was very sick in the beginning and have had two flares in the last 18 months. I keep my 11 month old granddaughter 6-7 hours a day during the week and a 5 year old nephew from Friday thru Sunday. I can do pretty good keeping house, doing household paperwork and taking care of the kids but am really tired at night. I can go out to the doctors, shopping or to do errands for about 1/2 a day. Then I have to rest or I am exhausted and begin with the feet swelling. Seems like the side effects of medicine causes me more grief. In trying to keep my finger (started turning black, trying to clot off my pointer finger) I had to start on nitro which I reacted to and started really swelling up, then changed to a BP drug to thin the blood, then added a diurectic to help keep swelling down, then had to add potassium because of the diuretic, etc. My finger is finally getting better, no longer black but it is still very cold. Once it is back to normal (going on 4months+) I hope to get off all those extras. On good days I can think and get some planning done but on days when I do not feel real great I cannot seem to think well. This is the hardest change for such a multi-tasker to accept. I am very greatful that my grandaugther still needs naps. I am learning to nap more per Sangye's advise. It helps.
Deb

Doug
01-31-2010, 09:05 AM
My new normal allows me to walk just so far in a day, then I feel very weak, sweat to the max. Once I get home, rest lightly, I rebound. I haven't established the exact point where I fag out (is that the expression???), but I carry a cane with me just in case! I learned the hard way to pay attention to this point of exhaustion: If I don't, I inevitably fall. When I worked, I had to do inventories that lasted just about three hours, which seems to be the limit of my ability to stand and walk short distances.

pwc51
01-31-2010, 11:40 AM
I was diagnosed about 6 months ago. At that point I was confined to bed, unable to climb a flight of stairs without running out of breath. Fortunately the relatively rapid onset and rapid diagnosis probably saved the day. I was hospitalised for 5 days within 1 hour of diagnosis then spent about 1 month hardly moving from the couch. The diagnosis showed lungs, kidneys and sinuses affected, besides the joint pain and blood vessel issues. Kidneys are showing ‘normal’ readings now but I still have a background sinus problem that refuses to budge. As for breathing, I walk regularly gradually increasing from a 15 minute gentle stroll to a brisk walk over the hills lasting an hour or more. I try to do this daily but probably achieve about 4 times per week. My breathing is, needless to say, much improved although not quite at the pre-disease level (age could of course be playing its part too!).

I had a total of 9 weeks off work and then began a few weeks of half days. I have been increasing my hours since and am now just about full time again. I have a senior, stressful, position within IT for a global transport organisation. During this time I have been advised against travel, an integral part of my role, but am led to believe that once stabilised on mtx I should be able to consider it again. I am currently on 15mg mtx per week, having finished the ctx at the end of December, and about 12.5mg pred daily (have been reducing this by about 2.5mg per month over the past 3 months). My company have been extremely understanding but the challenge remains as to how to manage the stress associated with my job. Once back in the office for more than a few hours per day the expectation is that normality has returned and, of course, I tend to look well on the medication! I am conscious of the part stress, or lack of it, plays in controlling this disease and try to do all I can to mitigate this but it is no easy task.

I guess I am more tired at the end of the day than I was before and my sleep pattern is still quite disrupted (it was never brilliant at the best of times!).

What else can I do? Whilst the walking is pretty good I find other activity around the home quite tiring. Clearing leaves or moving snow leaves me needing a rest after 10 or 15 minutes. The result is I shy away from tackling things that need doing as they become major chores. Somehow I need to regain some upper body stamina and am not sure how to achieve this, or whether it returns once medication is reduced or stops? I also find standing at functions for any length of time quite uncomfortable – much easier to sit after a few minutes. Although there is no pain, my ankles get quite swollen at the end of the day so use this as an excuse to put my feet up. It is all quite frustrating as I used to be able to do so much more!

elephant
01-31-2010, 12:03 PM
I take care of my 8 and 4 year old kids ( full time). I do all the house cleaning, but have to break it up in a week. I walk on the treadmill 4 times a week for one hour. It really makes me feel like I am normal, after exercise. I like to get a part-time job, but having a hard time finding one. I am a RN, can't be around sick people....because of all the drugs that I am on. Right now I feel I am fighting something....WG flare or viral or bacteria...I will get my answers soon.

Sangye
01-31-2010, 12:56 PM
I haven't been able to return to work since mid-2006 when I was diagnosed and nearly dead. I've had non-stop complications--some life-threatening-- and have never gotten the Wegs into remission. It occurred to me yesterday that I can only measure my progress by comparing a year ago, 2 yrs ago, etc... because the changes are so slow and so small.

I was on oxygen for 19 months and haven't needed it for 2 yrs now. Until I started aquatic therapy last March I was very shaky walking and fell a lot. I couldn't sit on the floor until a couple months ago. I live in a 1-room basement and can clean it myself, but not all in one day. I can leave the house about every other day. Sometimes two days in a row. On my "in" days, I usually don't have the strength to take a shower or do much. If I do, then it uses up the reserves for the following day and I can get in real trouble.

I can drive myself to JHU 1.5 hrs away, but am completely spent long before I get home. I couldn't do that one year ago. I do my own grocery shopping using the electric carts.

I can stand for about 5 mins and walk (stroll) for about 10--both limited by lower extremity swelling and overall weakness. This limits things like dishwashing. I have to stop and sit. I can exercise in the pool for about 40 minutes. I've only been able to get in the pool once a week, because I need a day on either side of it at home. The pool day takes a huge amount of energy, since it involves a shower, getting dressed, walking out to the car, driving, walking into the facility, changing into swimwear, exercise, another shower, dressing, walking out to the car, driving home and walking back into the house.

That's how I have to think through anything I do. Do I have enough reserves for it? If I do it, do I have enough recovery time the next day(s) so I can get through the week? How much sitting, standing, walking, etc... is involved? I miss being able to be spontaneous.

snooz23
01-31-2010, 01:13 PM
I do work a basic 8-5 job (w/a very flexible, understanding boss) with a fair amount of stress. I take care of my 2 and 4 year old children when I can (my husband helps a lot--he was laid off about a year again which actually has come in quite handy since my dx). I tire much, much easier now and need to take many breaks. As most of us here, I was VERY active before so this checks and balance is quite hard to handle. Now the weekends are a bit different, I take my weekly mtx dose Fri. evening, become incredibly tired and then am pretty much out of commission until Sat. late afternoon. All my weekend time is spent mostly on the couch. Basically I may leave my house for a short time on Sat. if I am lucky and then I do try to do one thing w/ my kids on Sun., but again it's usually short and has to entail some rest time. Then Monday arrives again and it starts all over.

I was dx in Sept. and have been on mtx. and tapering doses of Pred. since then....so about 4 months of treatment. I am not in extreme pain as I was this past summer but have many, many more discomforts. Not sure if it is strictly due to all the damage done since the onset, side effects of drugs or elements of active disease. It is so frustrating to think we are filling our bodies w/ all this toxic stuff and yet the disease still may be roaming in the body causing more damage. My hubby keeps my hope alive by reminding me when I get to the day of being off the meds, it will feel so different. He says that all the little tiny aches and pains are amplified by all the meds. So things you probably may have never noticed before are super sensitive now. Of course like all of us I am in search of that non-drug remission state and also aware many need to figure out the balance that works for them depending on this creepy, horrible disease.

Brooke
01-31-2010, 02:20 PM
It's interesting to see how everybody is a little different. I think I am able to do about anything that I could before, I just know I would wear out a lot sooner than before. I am not on that high dose of steroid 20 mg, but sometimes I just feel like I dont care and I eat whatever. Like fast food and regular pop, I have gained about 20 pounds since October. I am going to try and walk on the treadmill next week and change my eating habits.

katwoman
01-31-2010, 06:16 PM
Brooke, I'm glad I'm not alone, I am the same just don't care what I eat and since being on the steroids all i crave is carbs and so love my hot chips...lol but I managed to resist while shopping today, it took all my strength to drive past KFC...
I have a treadmill collecting dust, used to get on it every day for an hour (that was over six months ago) so this week I am going to get back on the horse (so to speak), not going to go mad just do 10 mins and hopefully build it up.
Let me know how you go!!

elephant
01-31-2010, 10:44 PM
Brooke and katwoman, it took about a year for me to get on the treadmill ( 4 times a week). I first started walking around my house first ( acutally timed it ) I would do this for ten minutes, then increase it to 15 minutes the next week, then 20 minutes ...30 minutes. I got on the treadmill Sept 2009 on/off missed a couple of weeks because of sinus surgery. In Oct started to increase it every week. That's how I got to one hour a day four times a week. I use to be able to jog for 30 minutes, but now I can't. I am glad I can walk.

MCC
02-02-2010, 07:12 AM
Now I am having treatment my life is back to how it was before, in work and the rest of my life...apart from popping zillions of pills a day and 1-3 hospital visits a week.
I actually feel a fraud as I do no feel unwell, especially when I read how ill other people are. I guess it must be because I was diagnosed early after I had only felt physically unwell for about 3 months...although I have been told one kidney has pretty much had it.

I realise I may not always be well though, so I just think myself very fortunate that I am not too badly effected with Wegener's at this time.

Jack
02-02-2010, 07:25 AM
Mandy,
No reason to feel guilty, I'm sure everyone here is really pleased that you feel well. :)
After my transplant, I also had many years of good health with Wegener's in remission. With developments in drugs and treatment, there is no reason why more people with Wegener's should not be able to lead fairly normal lives.

elephant
02-02-2010, 07:52 AM
Mandy, I'm so glad you are feeling normal. That is great you got diagnosed early, and hope the disease will stay away from you forever. I hope you don't feel bad.

Sangye
02-02-2010, 08:22 AM
Mandy, you're not a fraud. Though I can't even imagine what it's like to be in such good shape, I would be miserable if you were in my shape. I hope you can get to a drug-free remission soon.

jola57
02-03-2010, 02:37 AM
Hi ho everyone, I am back from wintery Poland. Mandy, like Sangye said, you're not a fraud. This disease affects us differently and depending on how we eqch react, either we are totaly incapacitated or can still function normally. This does not mean we are not just as sick, it just means our bodies are better able to deal with illness. I for one do not let weg's limit my enjoyment of life and travel. I am blessed that i function normally (well sort of LOL) and plan and do enjoy every day of my life. I am full of awe and amazment for Sangye, Jack, Doug and all others who suffer terribly and still manage to sound positive. Jack is probably the longest surviver of wegs and look at him. Enjoy your life without guilt.

JanW
02-03-2010, 03:21 AM
I am in same -- in awe of Jack and Sangye and all of the others who are really suffering horribly and unpredictably with this disease, and can still contribute time to educate the rest of us.

moyan
02-03-2010, 11:53 AM
Hi all, I often feel that way: My problems are so little, why am I here? I know: To learn and learn and learn some more. Was at doc today and actually steered the conversation my way! With pleasant results. A first. :)

Sangye
02-03-2010, 12:54 PM
Good for you, Moyan!

elephant
02-03-2010, 02:19 PM
Hey you all! No body's problems are too big or too small. We are all in this together thick and thin and actually being on this forum helps all of us mentally and physically.

MCC
02-03-2010, 04:03 PM
I am in same -- in awe of Jack and Sangye and all of the others who are really suffering horribly and unpredictably with this disease, and can still contribute time to educate the rest of us.

Yes me too.

I am also grateful to have this forum to ask questions and have understanding as others also dealing with Wegeners, thank you.

Sangye
02-04-2010, 04:44 AM
No body's problems are too big or too small. We are all in this together thick and thin and actually being on this forum helps all of us mentally and physically.
I couldn't have said it better! :D