Tuesday, October 4, 2011

Monday Muse--late in the day

I am sure you have heard the expression "Only the good die young"...well in my life, that has pretty much been a true old expression.

I find it seems, only the YOUNG or the GOOD get hit with debilitating illnesses etc.
Most of you know that I have a niece with MS, a grand niece with OI (Osteogenesis imperfecta---her bones break easily--she is lvl 1, moderate) her younger sister my other grand niece has EB(Epidermolysis Bullosa-- her skin is missing certain amino acid chains that form anchors-so any touch any rub, any pressure or friction, causes instant blistering, and then the skin sloughs off. she has a combo of 2 types that are the rarest), which will be fatal, no one knows when but usually these kids die in their teens if not before(because of Infection).

I used to have a picture and a link to her website, and for donations. They go through about $2,500.00 a month in just gauze and aquaphor and the insurance pays NONE of that. that also doesn't count, the vinegar and the bleach, that Daisy has to be bathed in e/o day (vinegar and water one day then bleach and water and so on) Her one leg has never had an outer layer of skin on it, and is infected all the time with MRSA and pseudomonis. Daisy often has "Blue spells" when going through her daily dressing change ritual which is excruciatingly painful, they often have to use an ambu bag on her to breath. She weighs about 1/2-2/3 of what she should weigh at the age of 4, she has tube feedings, to help, but it isn't much. I'll have to put that link back up. There is a great organization that helps families with EB called dEBra.

My son, had a good friend from HS get a very rare form of leukemia. he went through hell for almost 5 years before a bone marrow match was found. He is doing well now. But no one knows what the future holds.

Well now, A talented artist that many of you may know, in the stamping world. Betty, from SIMPLY BETTY STAMPS, has shared some tragic news with us. Betty's 17 yo son has been diagnosed with Throat cancer. They have limited insurance and limited funds (yes, I know we all do) but ever $1 helps, and if you could give up a couple of latte's to donate to his medical fund, it would be awesome. Karma is real and what you give, you get. maybe not tomorrow, maybe not next month, but it does come back. If you are a stamper, then make a purchase! there have been some SUPERBLY SUPREME NEW RELEASES recently.
A couple different Halloween lines, and more. In a week or so there will be  "Jude and the rockers" Autumn line.

Please click on the button the very top of my side bar and donate to help today. Not that donations need to have something repaid in any way, you will receive "Zander" the digi image on the button for your donation!

A friend of mine was just recently DXed with colon CA also. She has no insurance, and her state does not offer medicaid, and she is not old enough for medicare. I have no clue how she is going to do anything about her bills yet.

Ugh, this is just the PITS. We all have our burdens etc. but i wonder sometimes if I am a negative influence of some kind, as I seem to have all kinds of bad news around me, friends, acquaintances, family members etc.
I am sure it is just my depression and anxiety talking but man, I am really tired of always hearing bad news.

Please, please help this young man...his life has yet to be lived.

1 comment:

Dark Mother said...

I am so sorry to hear about all of these people you so obviously love and care about deeply. I wouldn't put the blame of "negativity" on yourself. Perhaps it is your lot in life to learn through death. I only say this because I have learned it is mine. As I set up my Samhain altar yesterday, as I do every year, I added pictures of my loved ones who have died. There are 8.