Frustration: being unable to function as you once did
G'day all...This comment was posted recently and I thought I'd try and address is here. I don't know who posted it because you didn't leave a name or email address. Pity.
Hi, my 43yr old husband was diagnosed with wegeners about a year ago. So far the symptoms have not been too bad. He seemed to be symptom free until recently. Its so hard to see a very athletic, physical man who, aside from a runny nose and eyes that look like cherry tomatoes sit around and be unable to do any thing. I know it bothers him to see me doing all of the yard work and stuff is there something that some one may have said to you to make it easier and less frustrating for you?
I can definitely understand that. It is incredibly frustrating being forced to sit and do nothing. I had exactly the same experience, having to watch my wife do much of the work and also pay other people to do the work that I should have been doing. I wasn't athletic by any means but I was leading your typical type-A existence doing everything at once then crunch, I hit the ol' WG brick wall.
There were two things that the nurses in the hospital (and a few other people) said to me that helped (not much but they helped all the same).
1. Three steps forward and two steps back
Sounds really positive doesn't it?? NOT! I thought that until I realised that the more I am aware that any progress I made would be tempered with a setback or two, the more realistic I became and the more I noticed that I was moving forward. The more time went on, the more it became 4 steps forward, two steps back, 5 steps forward, one step back etc.
2. Baby steps/Celebrate the positive
Relates closely to the first in that progress will be slow but it will still be progress. Make a fuss when something positive happens no matter how small. "Look! I managed to walk the length of the hallway today without stopping! Break out the party poppers!!! WOOHOO!!!
In the end though, no matter what you say to someone, it has to come from within, from a positive outlook and from an awareness of the progress (no matter how small) that is being made. Oh man, I sound like Dr. Phil.
On a more practical note, can you afford to pay someone to do the yard work? Then you could both sit an watch. It's not an ideal solution I know. I don't know how badly your husband is affected but perhaps there's stuff that he can be doing while he's recuperating e.g. folding clothes, peeling potatoes, helping kids with homework etc.
Cherish what you have, not what you don't have. Life is everything, the rest will come with a subtle blend of planning, patience and brute force :-)
posted by Andrew MacLean @ 10:22 AM
6 Comments:
Let us pray for the best!!
Its only momentary..
I'M 30 yrs and I have WG and was diagnosed in 1995...quite a long time.. I have gone through most of the symptoms that involve the lungs, legs, nose, etc.. you name it.. I had it..
What do I get out of it? I learned to focus on my recovery, dont think that what you can't do at the moment.. time, life and God will give you back and with interest the time that you now believe you arent taking advantage of.. be patient.. follow your treatment, dont give up.. and give thanks cause you will have your "life" back and will cherish it more than those than dont have WG.. You will be making up for lost time!
julieta,
I just stumbled across your comment and wonder if you could be of some support to me? I'm 31 and was diagnosed with WG at the end of 2002. It has been limited to the neck up and I was doing ok on prednisone and methotexate. Then when I was 3 mo pregnant the end of 2005 they found a mass behind my right eye and none of the treatments seem to be working. I am on an enormous amount of prednisone and going on 8mo of Cytoxan treatments. This Wednesday they are going to start Rituxan I guess. Not really sure what that all entails. But, I thought I would try to start communitation with you, it would be nice to talk to someone who KNOWS what I'm talking about. I also noticed that you mentioned God, I know that is the only way I've gotten this far with all of this. Please respond.
Great job on this advice. :-)
'Cherish what you have, not what you don't have.'
Can't help but comment on that: This is so, so true. I have WG, diagnosed at 44. Wasn't doing too well at the time. My life was disappearing fast at the time. The 5 year journey from that point till now has been very different from the road map I'd laid out for myself for my life, but so different and rewarding in so many ways. Life has been rewarding in ways that I'd probably never have noticed if not for the disease and my near scrape with death. Had I dwelled on what I didn't have, as opposed to what I did, I doubt I'd be here to talk about it.
My 39 yr old husband was diagnosed with WG after an open lung biopsy this year after having sinus and recurrent otitis media for last 2 yrs.He was otherwise very healthy.I have so many questions.
He has already finished 3 months of Cytoxan and the xrays of his lungs showed tremendous improvement right after one month of treatment. The nodules(as big as 4 mm)have disappeared. Now the confusing part is that we we're seeing 2 drs( both at the top hospitals)The Georgetown hospital dr(a senior 60+)suggested methotrexate but the John Hopkins dr suggested Imuran. Any advice???
And also the GT hospital dr suggested to taper the prednisone in aggressive alternate day style like 50 mgone day 40 mg next day for a week and then 50 mg and 30 mg next week then 50 mg 20 mg next week.The JHU doc was dead against it and said this is a sure shot way for relapse. Any advice?????
Pl give me your advice on any other things that you all may have with your personal experiences, along the way. What mistakes you committed that you would not like others to commit,what precautions(the real ones)Any alternative medicines that anybody tried and worked?? I have never believed in western medicine but today i feel helpless.(My husband has already experienced the side effects of these toxic medicines- high blood sugar, osteopenia, severe acne all over etc.)Any natural foods that helped? I guess these are enough questions for today. Pl respond.Thank you all.
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