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as you can see from my post yesterday my son was prescribed some pain meds to help take the edge off the pain he was in from the skin infection. This same kid who went through 11 bouts of staff infection, of all the pain he endured that was probably the worst and he had it 11 times, staph is common for people with DM because the skin constantly itches.
So inside my son's body he is stiff, sore, his body feels 'heavy' to move it around because the muscle mass is so comprimised it's like he is lifting and dragging his body around, this adds to his fatigue, he feels exhausted all the time even though he sleeps 8 -10hrs a day. Some days the muscles even hurt, I understand that it feels like the day after a really intense workout at the gym, when every muscle feels so sore it hurts to move.
On the outside, his skin has a rash, it itches, it looks like he has body dandruff, he is constantly flaking, he can't help it but I have to constantly shake off his bedding, clothes and vaccuum because of the constant flaking. He doesn't hardly realize he itches anymore, at times the itching is worse for a variety of reasons, he gets infections from the constant itching, that causes it's own type of pain.
He use to also live with constant stomach problems, fortunately that has been alleviated in the last few months.
Needless to say every day he lives with pain, some constant and some comes and goes depending on the symptoms. Yesterday for the first time he took a pain medication, (I don't know why I waited so long) and it was like a whole new way of feeling for him. Troy has been 'sick' longer then he was healthy, he got sick at age 6, so he doesn't remember what he felt like before then, he use to but those memories have faded, especially this past year as his flare up got the worst. Yesterday he told me all teary eyed “I can't believe how different I feel, I know the stiffness and soreness is still here but it doesn't hurt the same way. I know this sounds weird but it feels like something is missing, I don't MISS the pain but I have gotten so use to living with it, it is strange to not feel it”
Of course I also have tears in my eyes, it is bittersweet, I feel happy for him that for a moment in time we have found a way to take the edge off the pain, I feel naseaus thinking about what my son has learned to endure everyday. I feel angry, I feel sad, I feel frustrated. I could easily get lost in all that emotion, I want to, I want to be angry for a little while, I want to cry but Troy says “stop mom, I feel good, even if I know it's not going to last, let's just enjoy it while it does”
I still want to be angry and sad but I have to let it go, if Troy can then I have to as well.
Troy teaches me how to Live every day, I know how to survive but Troy knows how to LIVE.
troysmom,
As a mother of a 12 and 9 year old, I have sympathy for you and what you are going through. I can't even begin to imagine what it is like for you and Troy. Do you have a good family support system? I sure hope so. Troy is a very brave young man. He is lucky to have you for a mom. It is easy to tell that He is your life, you are very devoted to him. I hope you get a little private time for yourself also…… Best Wishes to you both. Thanks for sharing with us……..
Love, Judy
[user=1358]troysmom[/user] wrote:
Troy teaches me how to Live every day, I know how to survive but Troy knows how to LIVE.
Powerful words, Troysmom. Whew, every post you make about your dear Troy just takes my breath away….the maturity, the deep compassion, the masterful patience and wisdom. He really has so many gifts and has accomplished so many profound learnings that very few his age have had to do.
As his Mom, it's only natural you'd feel your role is to ensure your family's day to day wellbeing. No wonder you feel as you do, saying, “I know how to survive,” but you should also give yourself one huge hug, because you produced this amazing young man and he wouldn't be who he is without your loving care. He sure does know how to live in each moment, but you've provided him that opportunity by giving him the space to be who he really is.
You're a terrific Mom, Troysmom, and I hope you are mamaging to keep your posts here in some type of journal, because they are the seeds of one tremendous, life-affirming book!
Troy and his Mom rock! :dude: :dude:
Peace, Maz
Troysmom,
I'm glad you were able to find a pain medication that helps Troy. Being in that kind of pain is so draining and make all of the other limitations from the disease even worse. My husband took Vicodin for about 9 months so he could sleep at night. He didn't particularly like the idea of taking it but he knew that if he didn't sleep he wouldn't heal. Now, he has gone over a year without any pain meds and he is a completely different man from a year ago. I know you'll be able to report similar success down the road.
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