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Because this journey can be daunting, painful it is important to focus on the victories, small as they may be.
My son has made it another week without falling, I can't remember is this the 7th or 8th week with out falling.
Last week my son had crust so severe from drying and dead skin he did not move for three days, it was like caring for a burn victim, his skin was so dry and tight it hurt to move in any direction. He wasn't using the aquatic therapy pool or showering because that hrut to much as well, for three days he lived in his recliner. By thursday his tutor convinced him to take a walk down the street and back with the dog, since that day it gets better and better each day. It took as many days working with the chiropractor to help get his body readjusted and re aligned from having sat for three days but by Monday of this week all was well as if last week never happened.
Some things go as quickly as they came with no explanation, I made an appt with the dermatologist to figure out why his skin was crusting like that but of course couldn't see the doc until this week, now for the appt I have nothing to show him, the skin is completely clear, my son and I are both amazed at the clearness and smoothness of his skin, that rarely happens with DM.
My son jokes that he is part reptile, he has to shed the old dead skin before the rejuvenated skin can surface.
For the past two days my son has asked if we can walk down the street with the dog, my son hardly ever goes outside, down the street is not very far at all but for my son it is leaps and bounds. He has been using the front steps without any assistance, usually I have to stand in front of him and 'pull' him up the stairs with his arms. On sunday he joined my young daughter and I at the park, he didn't get to play but he came, fed the ducks and then sat on a bench, I honestly can not remember the last time my son left the house for anything other then medically related activities, my daughter is 5yo so her memory is short, she can not even remember the last time my son came to the park with us, it was probably last Summer.
Since my son started taking Cyproheptadine HCL 4mg tablets to help relax his stomach muscles he hasn't had any stomach discomfort which was typically a daily thing, he often felt very gasey (sp) and naseaus, which often led to him just wanting to lie down. I can't help but wonder how much of this new energy comes from the fact that his stomach isn't in constant discomfort.
It feels so good to see some life back in my son, although I can't help imagining what next week will bring, I feel like I no longer trust anything. Even if that is the case I will always take the time to honor and appreciate the good/victories as it comes
Mom,
This brought tears to my eyes. What a joy to hear Troy is seeing some light at the end of a very long, dark, tunnel. Even if there are more setbacks, the pattern seems to be fewer setbacks and longer good times. Eventually things get reprogrammed and you can let your guard down.
About that time he'll be driving and sorry, we can't help you there. :roll-laugh:
So happy for you both…….kim
I have been following your story and praying to read a post just like this! Hooray! I am so happy for you all! Progress!
Michelle
Thanks for sharing, so lovely to hear good news. I never knew you had another little one to care for, how very busy you must be dealing with all of Troy's daily challenges, and a young daughter as well. You are to be congratulated for your fine spirit and any rewards you reap along the way are surely well deserved. Kindest regards, Christina.
[user=1358]troysmom[/user] wrote:
It feels so good to see some life back in my son, although I can't help imagining what next week will bring, I feel like I no longer trust anything. Even if that is the case I will always take the time to honor and appreciate the good/victories as it comes
Troysmom–
I'm speechless–what improvement!!!!! Thank you for letting us know.
Troy is one courageous young man!!
Continued improvement 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?
I too have been following the seemingly unyielding trials and tribulations of your journey with Troy. This post is incredibly beautiful and inspirational. I am so happy to hear of the respite both of you are experiencing. I wish you many more of these intervals on the curvy 'road back'.
Take care, Nickie 😀
Oh mom,I am sooo happy for your son…and you.I often wonder what kind of a basket case I would be if my children got sick.Can't remember how many prayers I sent your way as sick children and hurt animals make me cry my eyes out.
As my doctor says….it's all about the gut…. when refering to disease.Even before running tests she had me on digestive enzymes,gluten/suger/dairy free diet.and MSM.She is a phenominal doctor who gets phenominol results because she was once in our boat also
xxxxx LynneHow wonderful to get a few rays of light and peace in this painful process. We are all hoping for many more joyful moments for Troy. It's astounding how these diseases give us appreciation for such simple things — a walk with the dog and a few hours at the park. Our prayers are with your family.
Bonnie
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!I knew we would be hearing a good post from you soon and even sooner than maybe you expected. I'm very happy your son is making progress.
Troysmom….what an exceptional young man you have brought into this world and raised. His efforts to gradually step back out into life are truly heroic at his tender age and I have no doubt he would agree that he has a pretty terrific role model in his Mom. Please tell Troy that we think he ROCKS and he really deserves the dude icon for hanging in there! Please also tell him, he's no reptile (okay, I know boys of his age may be in to reptiles ;))…I think he's more like an amazing butterfly breaking out of his cocoon!
:dude::dude::dude::dude::dude::dude::dude::dude::dude::dude::dude:
Peace, Maz
PS. I agree with Kim…. the teenaged driving thing is a real heart stopper! Been through it twice now and it doesn't get any easier. Ugh.
Wonderful news, troysmom. And I hope the news just keeps getting better so that you are able to trust and enjoy it. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Troy's Mom:
The other APer's here have said what I would have…just wanted to add my name to the list of well wishers. Thank you for sharing this wonderful news.
Trisha
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