Even though she's not better and A LOT of healing still needs to happen (especially on her legs) .... I am thrilled because she is happier and more herself lately .... enjoying life again (although not fully yet ... but enjoying the days / weeks when she's free from a flare).
"Life with God is not immunity from difficulties, but peace within difficulties"(CS Lewis)
Wednesday, 23 October 2013
Swimming
This was such a happy moment for us when Eden decided to climb into the swimming pool (thankfully a salt swimming pool) with her brother ... it was totally spontaneous, so she got in clothes and all .... that night she had her first bath in nearly 2 months (usually I just wipe her down).
Even though she's not better and A LOT of healing still needs to happen (especially on her legs) .... I am thrilled because she is happier and more herself lately .... enjoying life again (although not fully yet ... but enjoying the days / weeks when she's free from a flare).
Even though she's not better and A LOT of healing still needs to happen (especially on her legs) .... I am thrilled because she is happier and more herself lately .... enjoying life again (although not fully yet ... but enjoying the days / weeks when she's free from a flare).
Friday, 18 October 2013
6,5 Months into withdrawal ... FINALLY less skin shedding!!!!
Up until last week I have always had to sweep up this amount of dead skin from Eden's bedroom floor ... this continued for almost 6 months.
This is how much I swept up this morning .... a quarter of the usual amount!!
Wednesday, 16 October 2013
Celebrating small victories!!
Every morning I vacuum Eden's bedroom floor and wash it so that dust mites won't collect (laminated floor so I can clearly see the amount of skin that is on the floor ... and it's a TON) ... this has been going on for MONTHS (probably 4 months) and just gotten more and more and more and more and mooooorrrreee.
Until this morning ... when I noticed that the "TON" of skin have now reduced to about half that amount!!
When I asked Eden if it's just my imagination or whether she's also noticed it ... she was very blaze'about it saying "I've noticed it for a while now but thought it was just a TSW thing and probably nothing to think about"
I am ECSTATIC!!!!
We've gone from Red Burning HELL FIRE skin to skin that is not so red anymore and doesn't burn all the time
We've also gone from having trouble regulating body temperature to having a normal body temperature (no more chills and constant shivering)
We've gone from flaking/shedding a ton of skin to about half that amount now ... and probably in the near future NO MORE SHEDDING OF SKIN!!!
It's so easy to get caught up in the negativity of this dreaded painful irritating frustrating heartbreaking agonizing TSW journey that one forgets to notice the small little victories.
Wow :)
Sigh.
Feeling really grateful at the moment.
Tuesday, 15 October 2013
Just being a kid
I just love this picture of Eden and her brother .. playing happily like a normal kid ... her face is looking so beautiful and clear and the moment ... her arms are looking a lot better (far from perfect) but A LOT better ... her tummy, neck and back areas are all healing nicely.
There's definite improvement in her legs ... even though a ton of healing still needs to happen.
The best thing is to see how clear healthy skin is appearing ... and even more so is to see her happy ... positive and even excited about some things no matter how small / insignificant.
Grateful for small victories.
Monday, 14 October 2013
"If the cup won't pass .... drink it"
Just some comforting words from Elder Holland at
the recent General Conference held in Salt Lake Utah.... even though he was
specifically talking about MDD / Depression I found this talk extremely
comforting and strengthening for those who are going through all sort of
trials.
As the
caregiver of the person who is suffering from an illness ... the following
words were very encouraging and comforting to me:
"If you are the one afflicted or a caregiver to such, try not to be
overwhelmed with the size of your task. Don’t assume you can fix everything,
but fix what you can. If those are only small victories, be grateful for them
and be patient. Dozens of times in the scriptures, the Lord commands someone to
“stand still” or “be still”—and wait. Patiently enduring some things is part of our mortal education.
For caregivers, in your devoted effort to assist with another’s health,
do not destroy your own. In all these things be wise. Do not run faster than
you have strength. Whatever else you may or may not be able to provide, you can offer
your prayers and you can give “love unfeigned.”“Charity suffereth long, and is kind; … [it] beareth all
things, … hopeth all things, endureth all things. Charity never faileth.”
Also let us
remember that through any illness or difficult challenge, there is still much
in life to be hopeful about and grateful for. We are infinitely more than our
limitations or our afflictions.
My husband have
been kind enough to get a housekeeper for us on Tuesdays and Thursdays so that
I am free to attend to all our children as well as helping Eden prepare for her
upcoming year end exams I Learned a few valuable lessons while chatting to our
housekeeper (Pinkie):
This woman have
12 children (most of which are orphans) and 4 of which live with HIV ...
2 of which are under the age of 4.
She told me
that those first two years were the hardest but that things are much better and
life seems normal again ... that all the kids are doing well, enjoying school
and healthy (even though they have HIV) ... the hardest thing they are
currently enduring is discrimination and living with something that (UNLIKE
Cortisone Withdrawal) ... they will never (in this life) be free of... and that
they (no matter how hard they try) will never (Unlike cortisone withdrawal)
have a normal life ...
YET in all this
Pinkie comforted me saying: "never give up hope and faith ... trust
God and pray ... your child will get better ... I promise you"
What an amazing
woman!!!
PINKIE
UPDATE ON EDEN'SKIN:
About two weeks ago Eden had a terrible infection in her legs that caused her a great deal of pain and all of us many sleepless nights ... but thankfully our Homeopath attended to her and the infection cleared within 24 hours.
At the moment her skin looks the best I have seen so far in the past 6 months but still when others look at her they do a double-take.
Her Bff and her mom popped by yesterday and told me how beautiful Eden was looking and that they can see drastic improvement ... I feel like we are entering the beginning of her healing phase ... Joey mentioned it starts in the mind ... and I have definitely sensed a change in Eden the past 2 weeks ... she's more cheerful, sleeps better at night, (still scratches, oozes and flakes) but generally doing a lot better.
I feel that her healing is finally starting ... even if it's just in the beginning.
Eden's face, neck, stomach and back seems to be clearing more and more every day.
Her arms looked terrible up until this past week ... it also seems to be turning around for the better.
Eden's legs are healing the slowest (due to the constant infections she was picking up) but even though it's not looking perfect ... I (and other people) can definitely see changes and skin clearing and areas healing ... her legs will probably heal last but we'll get there.Wednesday, 2 October 2013
Painful legs
We have just entered our 6th month of cortisone withdrawal and poor Eden is going through yet another flare up and in a lot of pain ... from skin that is burning and flaking and oozing to skin that tore off as the blankets stuck to her legs during the night to painful bones, swollen glands, insomnia and insane itching!!!
Picture 2: Her legs have a purple colouring to it and there's thick skin but white parts at certain areas coming through
Picture 3: lots of tears as a result of torn skin from her blankets that got stuck to her legs last night :(((
picture 6: her tummy feels
Picture 7: neck very tight and sore when I wash it but otherwise it's not too bad.
Picture 8 & 9: arms looks a lot better but it's one of the most painful parts (apart from her legs) on her body
Picture 10, 11 & 12 painful and irritated and itchy legs but beautiful white skin in between the thick inflamed red areas.
But there's beautiful white skin in between all the inflamed red skin and perhaps this is wishful thinking but maybe ... just maybe it's the start of her new skin coming through.
Let's hope this is the light at the end of the tunnel ... even if it's still in the far far very far distance.
Picture 1: Torn skin from the blankets that stuck to Eden's skin last night :(
Picture 2: Her legs have a purple colouring to it and there's thick skin but white parts at certain areas coming through
Picture 3: lots of tears as a result of torn skin from her blankets that got stuck to her legs last night :(((
Picture 4: Eden's white skin on her hands coming through
Picture 7: neck very tight and sore when I wash it but otherwise it's not too bad.
Picture 8 & 9: arms looks a lot better but it's one of the most painful parts (apart from her legs) on her body
Picture 10, 11 & 12 painful and irritated and itchy legs but beautiful white skin in between the thick inflamed red areas.
Picture 13: still managing a brave smile
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