Wednesday, 30 October 2013

Strength to endure


Our family was listening to President Monson's talk that he gave earlier in October.

I really wanted to share this video as I find so much inspiration and strength as I realize time and again that we are not the only people experiencing suffering and agony.

President Monson lost his wife in May this year and here is this man encouraging and strengthening millions of people reminding them to stay strong and endure to the end.

I was especially touched by the story he shared of one of his old friends (this old man was 105 years old) ... he couldn't hear anymore and ... he couldn't see anymore ... he knew he was about to die and yet on his death bed all he could say was "thank you, Heavenly Father has been so good to me"

We showed this video to our children with the hope of reminding them that we are not the only ones with trials and pain and suffering ... that other people are going through a lot worse and that trials are there to strengthen us and bring us closer to the Lord ... even if it doesn't feel that way at the time.

I was reminded by President Monson to PRAY EVERY DAY ... that we really need the Lord EVERY HOUR ... and that if we hold on to the Gospel and The Savior & stay close to the Lord ... no matter how tough things get ... we will be given power and strength to endure those trials.

UPDATE WRT EDEN'S SKIN TODAY:

Her legs are looking good ... compared to a month ago... I find that her legs are healing the slowest ... she itches a lot and scratches and hence spreads infections which starts the terrible flare cycle all over again ... I have given Eden a spoon and nicknamed it "scratcher"... she's allowed to scratch but only with the spoon as it's easier to keep clean and bacteria won't collect on it as much ... but she doesn't always use it ... it's like she "zones out"when she starts scratching ... and don't care how much she hurt herself or how deep she scratches as long as she can scratch. Urgh!!


Arms looking good ... she still has elephant skin on her elbows, wrists and hands ... but it use to be around her neck as well and now her neck is softer, so I'm not too worried about it.

Tummy looks good and feels soft ... such a magnificent feeling


She flares a little on her back at times but funny enough she never wants to scratch her back ... she always only wants me to tickle it gently ... she says it calms her down.


And then finally ... the highlight of Eden's week was when a little girl called Amy & her mom Lena got into contact with us (they are going through the same ordeal ... Amy is currently in her 4th month of steroid withdrawal and have recently started a blog as well) ... in the picture below is Eden busy replying to Amy's facebook messages.

Such a blessing to have made a new friend .... someone to vent and share and laugh and cry with  ... via technology ... Yay for facebook :)

Amy's blog is:



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).





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

LEGS

 EDEN'S LEGS ARE LOOKING A LOT BETTER COMPARED TO 2 WEEKS AGO.



ABOUT 3 MONTHS INTO WITHDRAWAL.




"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!!!

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 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.



Picture 13: still managing a brave smile