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Thanks Eva for checking in and asking about Troy.
Since we moved a couple months ago I no longer have internet at home, I only check my e-mails periodically I no longer have the time to visit forums like I use to.
Troy is continuing on as usual, the cold weather takes a toll on him, we see the rheumy every two months, if you remember, Troy's original agreement with the rheumy is that he (the rheumy) would 'support' Troy taking minocycline as long as he continued to show improvement, if Troy was to back slide then he would return to the regular DM regimen of steriods and methotrexate.
The rheumy says Troy is in the top 5 worst cases he has seen of DM, in terms of responding to treatment. It has gone on for so long for Troy that he just now sees his limitations as normal, and the condition of his skin is normal for him.
He manages with what he has, he hopes for more but has stopped expecting it.
The rheumy continues to be amazed that every two months Troy shows up with improvements, small as they may be they are improvements, he has yet to show up worse off then the time before. Troy has let go of trying to be 'normal' and he takes pride and joy in his own victories, things such as getting off the couch without help, or getting off the floor without help. Troy doesn't normally sit on the floor but at every visit with the rheumy he has to go through a round of strength test and one of them includes getting off the floor. It is still painful for me to watch Troy get up off the floor, he struggles and improvises when his body's limitations get in the way, BUT HE DOES IT, his way. It baffles the doctor that Troy is maintaining the strength he has even though the only meds he takes is minocycline and cyclosporine. It goes against everything the rheumy knows and understands about DM and how to treat it.
It would be nice to see Troy's physical quality of life improve more, for example he can't attend school without a motorized scooter, so it would be nice to see him be able to move about without a scooter, but Troy's quality of life isn't low at all.
He has a better quality of life then most physically able people because having endured the battle of a chronic illness it teaches you many valuable lessons about life that some people never grasp, he takes nothing for granted, he is mature, wise, etc.
Recently Troy started volunteering in the special needs classroom at his school, emotional and mental special needs, not physical, typically when the rest of Troy's class is at gym for an hour he would hang out in the nurses offices, last week he asked if instead he could use that time to volunteer in that class, he told me that sometimes he has to park his scooter in that room and the kids are so happy to see him and socialize with him, and that they are authentically happy and kind in a way that middle school kids don't seem to be capable of.
One day Troy was feeling particularly in pain, the cold mornings in Maine are extremely difficult for him and of course he has to be at school by 8am, so he often gets to school cranky. After volunteering his mood was completely lifted and although he was in pain he was happy and in a good mood. He says volunteering in there gives him extra motivation to work through the pain and go to school, because he wants to see those kids and he wants to meet the obligation he has made to them, where as any other morning he would want to just stay home.
He also expressed that being physically handicapped puts him in a position where he has to rely on others all day long, it makes him feel good and proud that he can give back and not always take, he says it feels good to contribute, it makes his days more purposeful.
So all in all, Troy continues to manage, as you all know so very well some days are better then others. He continues to find his 'normal'. He takes nothing for granted and celebrates all victories, no matter hom small they may seem in the grand scheme of the universe, he is learning how to live his life rather then constantly try to catch up with everyone else.
I'm sure I don't have to tell you this but, I will anyway…Troy is an AMAZINGLY gifted young man. Not only is he an incredibly brave, courageous, tough boy, he possesses wisdom, compassion, and empathy way beyond his years. The fact that, despite his limitations (I hate to even use that word!), he still finds it important to give back to other children in need, to help them smile, laugh, and feel wanted, is just beyond what I can express in words. What an amazing son you have raised!! You must be SO proud of him!
Thank you for sharing how he's doing, and please know that we are always here for you. I know it's a long road but, I'm glad to hear that he is improving. Tell him to keep his chin up, and to keep fighting, and please give Troy a big hug for me–he truely inspired me in so many ways today!
Maria
Thank you, mom, so much for posting about Troy. I too was wondering and hoping for the best. You are an amazing story teller, I was gripped to every word.
To say Troy is an amazing kid would be a gross understatement, all qualities he undoubtedly learned from his mother.
Please tell your son that “Team Troy” is behind him all the way and that he has inspired everyone on this board that no matter what your limitations you can always do more.;)
What a kid!
Take care………..kim
[user=1358]troysmom[/user] wrote:
He continues to find his 'normal'.
Please tell Troy that he is so above average in his wisdom, resolve, and courage, that when he is physically healed he will be unstoppable.
I will continue to keep you in my prayers for continued improvements–
My best to you,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Troysmom,
thank you for your update, Troy has been on my mind since the weather has turned so cold even in Texas and I know your area has been even colder.
I am so glad he has been volunteering in a special needs class, and I belief that it makes him feel better. Hope he can keep it up, he probably enjoys it more than sitting in the nurses office.
I pray for him also every day because there are so many children out there with RA assoicated illnesses and as bad as it is for an adult I think it is worse for a young person.
Take care, give Troy a hug from his support group.
Eva:D
Eva Holloway
[user=236]Eva Holloway[/user] wrote:
…there are so many children out there with RA assoicated illnesses and as bad as it is for an adult I think it is worse for a young person.
I second that, Eva. Troy just never ceases to amaze me with his strength of resolve and character:dude:….no doubt due in no small part to his amazing Mom. :dude:
So glad to hear Troy is still making improvements, no matter how small. Hopefully, this is providing you with the comfort that his healing trend is for the better, Troysmom!
Thanks for the inspiring update!
Peace, Maz
What an inspiring young man. It's so easy to become self involved when one has a chronic illness, and yet he is able to look beyond his own pain and see the needs of others and then help them. It's a double blessing; it helps the children in the special needs class, but also gives Troy a purpose and feeling of self-worth. Thanks for the wonderful update, tell Troy we're all very impressed!
Thank you for giving us an update and I'm really glad to hear Troy is improving. Sorry, your internet situation isn't very good as we miss hearing from you!
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