Letter to all....from LOTSOFKIDS

[Teresita 0]

Diane my prayers are with you and as you stated in your letter, you are blessed and highly favored. Stay in prayer and with God. It makes your heart lighter and things a little bit easier to deal with. Your continued weight loss is not irrelivent because you might as well look good in a hospital gown while you are there.

Hugggsssss to you and I am so glad you have allowed us into your life.

[lotsofkids 0]

I was just coming back in here to give a big hug to vinesqueen. I was reading her journal and SHE too has a lot on her plate (poor thing)

I tell my kids give the simplest of kindness......smile and be pleasant with everyone.....you never know what difficulties someone is facing at the moment.

I too will be facing and am currently on high doses of steroidsl. That has squashed my hopes for quick wt loss.....but I think if I don't give in to the increase in appetite...I can hopefully counter-attack.

I have lost 20lbs since all this mess has come on board....so I can coast with that for a while (I do look nicer!)

thanks everyone for the support and prayers....

[gentlespirit 1]

Diane~

You are in my thoughts and prayers. Sounds like you a re blessed with a wonderful family and friends, which will help lighten the load. And your sense of humor is wonderful! I have a card on my desk that says, "We laugh to survive"...I love that. Laughter can be truly healing. I am in awe of your strength and pray that things start looking up for you soon.

Hugs~

Emily

[Marimaru 7]

Diane,

I hope you hear good news from your doctors and you are able to get this taken care of as soon as possible!

*hugs*

[live2canoe 1]

Please write back soon and let us know what the Neuro Guru had to say.

We're all pulling for you!

[lotsofkids 0]

we were on the phones this morning and trying to get me hooked up wth the Neuro gurus in cleveland. The idiot nurse told me the next priority appointment is booking well into September....I smiled, and told her that Her doctor had just been discussing me with another Neuro for a 1/2 phone consult and please call and let me know when THE DOC wants to see me. It will not be more than a week to ten days.....as I am a walking time bomb!

She never got back with me.....but he was probably doing procedures or something and first thing in the morning....I will be chasing theml. I am a very rational person.....but patience has never been one of my better traits!

Severe Cerebral Vasculitis is very rare (and dangerous) so I guess I am "just" special!

I need to clean up the bills and paperwork....and take my mind off all this health stuff......I made a haircut appointment for tomorrow so at least I will feel pampered for a day and have a style before they give me a bald buzz cut! One of my friends said she will go bald with me! But she has long beautiful hair....so I can't let her do that!

Anyhow, my spirits are still high and my trust and faith that God is overseeing all of this is keeping me calm.

big hugs to all.....Diane : )

[divanita2006 0]

So glad to hear from you, lady. You are in my thoughts:)

[lotsofkids 0]

Show us your scars thread......but I don't want to appear a show stealer. I really am not in the scar beauty pagent.......but I think, Yes, I probaby have won this event! A recent 10 inch open heart scar, 3 chest tubes, right, left lung and diaphram....and of course my banding scars of 5/23

Lots of brusing and 6 central lines placed in my arms, neck and shoulders! I am not comfortable with posting myself in such a way so this will be a temporary link.

big hugs...Diane

[lotsofkids 0]

be donning a lovely cranial scar and a new haircut?

Oh, and 3yrs ago plate and pins from a tibia/fibula spiral fracture......and my twins came.....one with normal delivery and the second by emergency C-section

My body is becoming a road map of my hospital visits!!!

hugs....diane

[NewSho 20]

Nothing to say but...

((( HUGS )))

Bless you, we're thinking of you & Love you!

[lotsofkids 0]

well, my daughter is up in the night and she can't sleep, her throat is bothering her. We started treating her with antibiotics from Sunday night when my hubby suspected strep throat.

Looks like it is mono which is much worse and highly contagious. (I am worried that I am very much immune compromised these days...but we'll cross that bridge if needed) I have already been hugging her for the past 3 days and exposed if it is meant to be.

I will somehow get her to the Peds office in the am (I can't drive and hubby is working two hrs away)A blood test will confirm if she has Mono.

When it rains in my house.........it becomes Monsoon Season!

hugs.....diane : )

[paula 4]

Diane - we want to see the scar pix.. please? I have a map on my belly too - but I think You have more road-ways. :biggrin1:

Goodness, now a sick little one. How in the world did she get this - in the middle of the summer?

Helping her to get well may help you get your mind off of your own health conditions. PLUS - you'll get some special bonding in there! Just remember, God always makes lemonade out of lemons.

Sure wish we lived closer... LBT would do some cooking and cleaning for ya!

((hugs)) to better days!

[3loves 0]

Did you get a hold of your doc for that appt? Some nurses don't like not being in control. Priority appt in Sept? That is just stupid talk. :eek:

It will probably be difficult, but stay away from your daughter as much as possible. We had a very nasty strain of the strep that went around our family from our July 4th get together. My SIL thought it would be fine to bring her son with a rash and a fever b/c her wacko doc said he wasn't contagious. Well.....there were 5+ family members that ended up with this and my youngest had scarlet fever. It was horrible. I guess the medical people are seeing a lot more strep this year. Don't take chances....get antibiotics started ASAP to prevent the spread.

Did you post your scars? I missed them if you did. I bet you would win the prize. :heh: Take care my friend and keep us informed.

[Murphles 0]

Dear Diane-

I am so sorry to hear about all of this. I work terteriary care hospital and hon-that is quite a triple whammy! Rehab is not so great in Cleveland in the usual places-PM me if you need details. Akron actually is a better rehab town and Toledo is good. My thoughts are with you!!!!

[lotsofkids 0]

wELL, I took my daughter in the morning to the Pediatrician and the good news was....it was only strep and not mono.

The bad news was.....while the doc was doing his clinical exam of my daughter......I was running out of the exam room actively vomiting in a plastic container!

I was having hot sweats and nausea....with a horrible headache. When we arrived home ... I called the docs and they said I need to come to the hospital thru the emergency room and be admitted. So, from Tuesday thru Saturday that is where I have been. They did more tests on me, including a nuclear speck test of the brain. The official dx is something that I never even heard of....it is very rare...about 1 in 2 million! called MOYAMOYA (you can google it) I don't have vasculitis.....I have moyamoya. There is no cure or drugs to treat this.....only major surgery to improve oxygen levels. I will need a revasculization surgery...sort of a bi-pass surgery for the brain. Without surgery I am at great risk of stroke and/or hemmorages.

We have the team at Case Western University Hospitals working on putting together a game plan and the team at Cleveland Clinic to give a second opinion as well. It'll probably be a few weeks before we go for surgery. We want to be as informed as possible as to the risks. Well.....that's it folks....I will no longer worry about my banding surgery....as these last two months have been quite a ride with open heart surgury and my upcoming surgery will make everything else seem like a stroll in the park!!!!

send positive wishes my way.....smiles....diane

and Murphles you are right....I enjoyed Akron care a lot. This week while in University Hospital...it was so large and the care seemed so impersonal.

But they are the teaching hosp and have the cutting edge guru's on board to help with my situation.