Wednesday, October 26, 2011


Boy -didnt know that it had been that long since I wrote on here.  But then I am not one for a diary or any thing like that.
This is Crystal - the 16 yr old part that took over since Elizabeth left several yrs ago.
I cant remember all that went on over the summer - but starting back several months ago when we had a heart cath because of daily heart pain- well they said that 40 % clogged arteries arent bad enough to do anything about. I guess you have to wait till you have a heart attack till they do something about it!
Our eyes are no longer able to be corrected to 20/20 - so the "blind" part in  starting.  It is hard to look at something and not being able to see clearly.  Really it is annoying to be truthful!

But I am thankful that that 5 yr mark was past - the one the dr gave us to live- so not we are on borrowed time. And the bad part about it is there arent any drs here who are really drs.
At least in PA the drs all knew us and it was those drs that kept us alive but here- since last winter we have been sick and the drs here just dont give a damn!
And I know that there is a person out there that said-"oh she has been saying she is dying for the past 6 yrs"- well that is true- this body is dying-faster now since moving from PA. She should feel as we do - that we have been blessed for more moments of living - but some people just dont get that.
We pray fro her every night and K looks for a special star for her every night - maybe one day the whole pray will be answered-but sometimes a pray like that isnt answered till that person is ready.

Well we got our hearing aids-one didnt fit right so it got sent back.This past Mon we had to go get the new replacement for it.  Well after driving 2 hrs(!) found out that it was send to the hearing aid place- new but broke! I was mad! So the new one they are going to use the first programing and program it when it gets replaced for the 3rd time and then send it to me.  I like that better.
The 16th Of Nov we have a preop appointment-we are having that left foot done over again! I hope this time they do it so I can get a shoe on the foot!  Means more pins in the toes and not walking on it foe I dont know how long but I hope it will be done right this time- different dr this time.

Then there is the face problem.  It is still eating away the inside tissue of the ENTIRE left side of the face and beginning to creep over to the right side.  The left nostril started to bleed today-I knew that would happen sooner or later. That means it is eating a good tissue - so it bleeds-when it eats completely through the cheek maybe then they will do something about it.  It is a shame that we will have to wait that long to get something done about it.

After the face problem is resolved we will have them work on the right foot which has been broken and not taken care. Yes it is extremely painful walking on 2 broken feet and having 3 broken vertebrae in the back and 3 tumors in the back.  We usually can sit up for about 1-2 hrs and then have to lay down.
And to have to make that 2 hr dr to the VA hospital -be up for  another 2-3 hrs and 2 hrs home- I am ready to lay down and die in pain when we get home.
The pain is finally hitting K.  Before it didnt bother her but now it does.
Last night we hurt so back and she was out-all she did was cry for her mommy to come and hold her and make her feel better.  Other alters have tried to comfort her- but only her mommy can comfort her. If only her mommy would just give her a one liner of K I am here for you Im holding her,shh go so sleep.  She use to do that in the past ands it work and I bet it would still work-and she just doesnt know how much it would help this poor body all around. She is comforting total strangers out there but would even help this one person who needs her the most.
I wonder how much guilt she will have after this body is dead.

Well that is the medical part of the body-I wish there wasnt anything but DID wrong - because we are so sick so often - we get really angry and very tired.
Sometimes all K wants is for her mommy to acknowledge her - sometimes she wants her mommy just yo hold her  - but she is just like any other 4 yr who just wants her mommy.  But her mommy doesnt want to understand that.  Not in the therapist way-  but in a "I want my mommy" way.  A child-hurt, sick, frighten or whatever that wants their mommy.

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