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Cathy
09-26-2008, 11:48 AM
My son is Trev, his story is posted on an introductions thread. He is now 18 and in an adults world not copeing well mentally. Everyday is a struggle, I hope there is some light at the end of the tunnel. Most WG patients I see all over the web at least acknowledge they have issues and try to do something about them. Trev persists in ignoring all the boundaries, lives life like there is no tomorrow.. Legally he is an adult now, but I still struggle daily keep him going. Depression is not readily mentioned, but it is a huge part of his life plus ongoing issues which he tends to ignore.

Employment is also an issue, due to tiredness and physical restrictions.. Mainsteam can see a normal healthy teenager when they look at him.. he has many external scars hiden by hair of clothing, but his internal scars run deep. So he spends his days sleeping, playing xbox and online gaming. Sad really, but all the help I have managed to get him just see him as an average teenager.. or too hard.. as he dosen't fit into a box..

If there is any advice on how others are handling these issues.. I would gladly appreciate it.

DAVEY8105
09-26-2008, 02:32 PM
My heart goes out to you! I am a WG patient and the mother of two teen daughters.......I cannot imagine how they would cope with being stricken by a chronic illness. I have had issues with depression also, I believe for many different reasons: Grief from losing the life you once had; despair that you will never get better; isolation because you never actually "meet" other people with the disease (or at least, I have not) that could give you support; anger that you are in pain and limited to what you can do; and mood swings from the Prednisone that most of us have to take. However, I have also found many things that have helped me cope. Surrounding myself with family, friends and positive people; seeing a therapist when necessary; getting out and doing what Ican to make the most of each day; relying on my Faith; and trying to keep a sense of humor. When I get up every morning I make a concious decision to try and have the best day that I can possibly make it....life is short. I have also taken an anti-depressant, which tremendously helped me, although some people aren't open to that. As a mother, I imagine you must feel powerless to help him. I wish you all the best and my thoughts and prayers are with you.

Twice
09-26-2008, 06:02 PM
Hi Cathy,

My heart goes out to you. When I look back, I cringe at the thought of what I put my parents through. I was first ill when I was 9 and again in my late teens/early twenties, and I was truly worth despairing of in the times between (and for some time after). I had no interest in school and hung out with 'the wrong crowd' and, as you say, ignored normal boundaries and lived life to the full.

It's difficult to try to analyse my own behaviour, but I suspect that a lot of it was anger at my own misfortune: having missed out on so much childhood I probably felt that I deserved not to have to play by society's rules. I felt that I deserved to be able to have a whole bunch of fun to make up for the pain and general unpleasantness of WG and everything it entails.

What I failed to appreciate was that my parents were taking so much of the strain all the time. I got no qualifications and then, to top it all, I got ill again.

I don't think I really began to grow up until nearly my mid twenties, when I noticed all the other stuff I was missing, went back to school and on to university.

Growing up can be pretty tough at the best of times, but with illness and disability life can be difficult to swallow. In a strange way, your son's current situation seems entirely natural to me (and I see a lot of myself, there), but it's only with the benefit of my wizened 'old age' that I can appreciate the effect it had on those who love me.

I wish I could give you proper advice, but as a non-parent I'm not really equipped. If it's any comfort, though, in my case it just needed time.

Sarah

Cathy
09-26-2008, 07:14 PM
I thank you both for your comments.. really I do appreciate them.

Sarah, reading your post made my eyes water. I am hopeing deep down inside that he will discover the errs of his teenagehood, but my deepest concerns are that he won't get there. Looking down the barrel of dialysis by mid 20's, and the massive doses of chemo and retuximab, his eyesight isn't the best and his hearing deteroiting rapidly, it is hard to imagine a great life for him. In todays society of the young, it is here and now. Life is fast and he never thinks of the future. But it is like trying to put an old head on young shoulders, but I can see why he does what he does. It is so painfull for me to watch. One of his favorite sayings to me are. "and what would you know?" It's true, I have and will never experience what he has gone through nor what he goes through.. Yes, I have guilt.. I am the one who let him live.. I made some decisions that I have to live with. He never lets me forget it. I never wanted him to suffer, but seeing him is a daily reminder.

The big picture is I dream of a fairytale ending and everything will be back to "normal" whatever that is.. everyday for both of us is a plus. Therefore more time to turn things around..

Cathy
(http://www.fda.gov/FDAC/features/1998/198_dial.html)

Cathy
10-26-2008, 02:54 PM
Last week Trev and I saw his Thorasic and Renal doctors, we are still yet to catch up with his Nero doctor... he has requested Trev to see him, but on ongoing issue with getting the appointments manager to realize we just can't afford to travel 1200 klm round trip for 10 minutes. I have written letters, but all to no avail. We go down on other appointments and those departments manage to get him all on one day.. so I really don't know..

Not good news with young Trev though.. apart from renal function and breathing tests all being well below his last tests in July. His ANCAs now show positive. He is feeling OK though and came home but they are doing the ANCAs again next week. The results of that will depends what course of action will be taken, but he is on alert for anything unusual. He still thinks he is Superman though but on the news he immediately started taking Atacande again. But that is only for kidneys, so I am wondering if they will put him back on steroids, as he has been off them for a year now. Not from the doctors I might add, he took himself off as he is Superman.

Anyway, I just thought I would let you know where he is at. Still depressed, and without a job, still I am battleing with the "system", on his behalf. Life is still one day at a time.

andrew
10-27-2008, 08:01 AM
Hi Cathy...
You're doing a great job looking after yourself, Trev and organising all those appointments!

Perhaps something that the doc said got through to him if he started taking one of the meds again? Perhaps a look in on the dialysis ward next time he's there might help hom think about taking the medications he's supposed to take??? :confused: :cool:

Gwenllian
10-28-2008, 05:33 AM
Hi. I do hope things improve soon. I just wanted to say, that when I was first diagnosed at 14 years old, the depression quickly followed. I now see a very good psychiatrist, and am on anti depressants which really do help.
I hope your son finds some relief from this awful depression soon xx