Thursday, December 27, 2007

only a few more days...

until the beginning of a new year. i love the fresh crispness of a newly opened calendar-- the fresh clean pages just waiting for me to write some wonderful plans on them. ...and i love looking back at the old calendar and seeing what we did and when we were having a good time with ____ and where we were when we met____. And seeing what was going on in every month. i use my pocket calendar as a daily diary almost--- nearly every date has something written on it. so i can tell you just about any day what i was doing , who i was with, and were i was. most of the time the the days are fairly boring and the same but when i look and see something special it brings it all back to me - - - -what fun we had etc.

makes me wonder:
  • what will the next year will bring?
  • where we will be?
  • what we will do?
  • who we will spend time with?
  • vacation--with who and where and when
  • birthdays who will help us celebrate Katie's 22nd, Marks 53rd and my 49th??? Brad's 58th...Charlie's 78th???
  • will all of our precious ones be with us when the next year starts?

  • will we have new babies in our family in 2008?
  • will we make it through a new year without a devastating event?
so much to anticipate and wonder about

Thursday, December 13, 2007

Christmas Cards, cooking and ...everything

well--- OK i have been known to ummmmmm... procrastinate? I just started making my Christmas cards. couldn't seem to come up with an idea i liked. I couldn't find a Christmas tree stamp like i wanted to go with the paper i got to print our letter on. So,I ended up cutting the tree's (three different shapes) out of sponge and there you go. now i am having stamping issues with the paint. Can't seem to get it exactly right and either get blobs or no cover at all. then ....I have to put the dang things together, write the letter, print the letter, address the envelopes and then stamp and mail them---wheeeew!- - - - -in the next few days. oh and stuff the cards with our family picture. I would post a pic but now my camera has decided it hates my computer and they wont work together.
I'm getting the dress put away... it sits here and looks at me and waits on me to work on it---so i am putting it out of our misery and putting it away.
Oh and not to EVEN mention that i haven't even started making goodies--cookies- candy- cake- planning at least two big meals--
.......and finish the bathroom painting and putting everything back together and maybe put up my new little tree in there but then again maybe not---Geesh just thinking of all the family that will be here next weekend (22nd)
I got the sweetest little gift from Karen on i am going to steal her idea and make a bunch of them----someday that is. i wish i could take credit for the is a post-it note holder. She has made several different kinds that i know of-- she has sent me two of them. Wish i could post some pictures of them
well, I guess this is not getting the cards made nor the post it note holders, not the scrapbook pages for a Christmas present- nor the cooking etc
I am searching every one's blog for ideas and found a bunch that i want to try- Thanks for the inspiration Ladies

Tuesday, December 4, 2007

working on painting and the civil war dress!

well- i finally got up last night and got a little busy. Did a couple things and straightened stuff up. I am trying to figure out how to post some pics of my work. guess i have to stop being a man (LOL) and go read the directions.
i didn't get to work on the cards last night but probably will tonight.. Mark is working with his dad on some wiring at one of the rental houses so i will be here alone (YEAH!!!) for a while. i am such a true loner--- need just some " no one else around time-- with no TV or talking"
just finished my yogurt for supper so i have to go get busy with the painting--- and the Christmas wrapping--- and the sewing---

Monday, December 3, 2007

begining to cope and it's beginning to look a lot like Christmas

thank you all for the encouragement you have each given me-- i cant tell you how much i appreciate knowing i have friends out there. I think i am beginning to cope with my diagnosis (probable i still say). I went to my PCP last week for blood work and he said he still didn't think i had scleroderma... i told him that at this point i had done some much research on it that i probably know more about it than he does. He doesn't think I have the "right" symptoms for it...I told him I was a classic case-- Renaud's in my hands, dry skin and mucus membranes, alopecia==yep I'm losing my hair too. Anyway he just sorta looked at me--so i got my labs and left. I guess that is what comes of knowing your personal Dr. so long, having worked for him and being familiar with each other.... he thinks i am a hypochondriac LOL

Anyway--- didn't mean to get off on that subject. We are trying to get Christmas-y around here. Mark did the outdoor decoration yesterday and it looks great. The inside is about done as it is going to get. He is still working on the bathroom (paint) and i am working on the "dress from ______ ' well you know where! LOL Well actually i am sitting here talking to you and watching Charlie Brown Christmas. Then in a little while i am going to take a bath and go to bed--- how is that for a scintillating night?

I worked a little on the Christmas cards last night-- still making them LOL then gotta get them addressed and mailed. I need to get busy instead of just sitting here.

I love you guys-- have a blessed evening. I am going to try to post some pics of my cards if i can figure it out.

Thursday, November 29, 2007

Wednesday, November 28, 2007

Finally--a probable diagnosis for my health problems

finally!! a probable diagnosis for what ails me.. I don't want to complain so i try to keep my troubles to myself {despite what some people may think}. I have been having some real problems with my eyes (dry, infected, painful) and a really dry mouth ( so dry that my lips stick to my teeth when i try to talk), dry skin, extreme fatigue, skin discoloration and some itching. The neurologist (I see for migraine and sleep apnea) has ordered numerous sleep studies because despite my c-pap being set correctly because i remain exhausted.
A while back I was talking to a friend at work and she said "gosh. that sounds just like Marie _ _ _ _. she has sjogrens disease and she has a lot of the same symptoms". now keep in mind that i have been telling my PCP for a long time that there is something wrong with me--- i just don't feel right. He has poo-poo'ed me for several years and i felt he thought i was a hypochondriac. Anyway Marie printed out a list of the symptoms of sjogrens---out of 52 symptoms i had about 32 of them.
So with paper in hand and the previous discussion with my opthamologist in hand--in my eye problem post earlier---I trotted off to my PCP again. I showed him the list and explained to him the whole thing and insisted that he test me for sjogrens, rheumatoid arthritis-- something-- and got them to take some blood for these tests.
anyway -- trying to get to the point here-- on Oct 26, 2007 my friend Sandy from the office called me at work to tell me the labs were back..... I could tell there was something wrong by the tone of her voice. Her exact words were 'well, here is the good news you don't have sjogrens." i said well that is good i guess-- i paused and said "wait, i can tell by your voice something else has shown up-- tell me" . The reply she gave me was something i could never have anticipated ..even though i have mentioned it in a previous blog. the words i will never forget and that have changed my life were what she said " your SCL-70 was positive'. being a nurse i sorta knew what was coming but still have a hard time saying it---she said "SCL-70 is the test for scleroderma".
OK-- so long story short is that i have a 98% chance that scleroderma is my diagnosis. What the heck is scleroderma?? It is a auto-immune connective tissue disease that is pretty rare (14 in 1 million people have this and of that number 3/4 are female usually aged 34-52--only about 300,000 people worldwide have this). Literally Scleroderma means "Hard skin"--according to which type of scleroderma you have the course of the disease is really wide.
according to some of the information i have found-- the prognosis for the worst kind and worse case scenario is surviving 2 yrs. Most people do not fall into that category- some of the other info is that the average life span after diagnosis is more like 20 yrs. But-- heck even at 20 yrs i will only be 68 years old!!! that is getting younger by the day. But, and this is a big but, we don't yet know if this IS my diagnosis (really hard to diagnosis) or what form i have, what effects this has already had on my body (usual time you have had disease until diagnosis is 3 yrs because it mimics so many other things). i have an appointment with the specialist at the end of January--so i guess we wait some more.
anyway-- if you think of it say a prayer for me, for my body,(not only is the skin effected but often the real problems are with lungs, heart, kidneys and guts getting sclerosed-- and not able to work correctly) and my family and my mental health as we all learn to deal with this devastating diagnosis.
here is a web site for the scleroderma foundation if you want to learn more- -

if you have made it all the way through this -- i want to say a special thanks to you

Monday, November 19, 2007

hi there (if anyone ever reads this LOL)
i am in a OK news, bad news kind of situation. i have found out the root of all my health problems... the OK news is that now i know what is wrong.... the bad news is that it isnt something i would want to have-or want anyone else to have. It is one of those "orphan" diseases--something rare that only affects about 14 in 1,000,000 people (yep that is is 14 in 1 million) most of you will have never heard of it --when i tell you what it is. i have to wait to tell you until i tell my family which will happen this weekend.
anyway--- IF anyone is reading this and feels the need-- i would appreciate any kind of prayers or good thoughts you would care to send!

Thursday, August 16, 2007

HOT! and eyes are better-- yeah

I am pleased as punch to say—my eyes are about a 1000 times better today- I am still having to put the drops in really frequently until tomorrow—but they only hurt a moderate amount now. I am very grateful for the prayers of my friends and the good care from Dr’s. (Well three dr.s if you count the one at work and my cousin).

I am trying to get started on an album for (someone I can’t say in case she sees it) for Christmas. I have printed about 300 or more pics at WM and ordered some more last night. Anyway, since there are sooooo many pictures of many different activities and people and places I am going to do the whole album in probably black background (although I thought of white too) and limit the colors to 3-4 so to keep the album sorta together. Well that and if I am only working with a limited color palate that ought to make it easier to work on too.

I cannot believe the heat we are having... ET usually is not this hot- the record for today was 100. I just looked out the porch window and the thermometer out there says 100.9 it is too hot to breathe outside, and schools are closing because of the heat so the kids are not in danger. I think there is a quote about “mad dogs and Englishmen” that is related to the heat and it being too hot to go outside in the heat. Not that 100.9 isn’t bad enough but we have humidity to deal with also—course it is not toooo humid because it is so hot.

Wednesday, August 15, 2007

eyes again-- big old baby whine!

k-- Deep breath-- here is today’s news on the eyeballs. OK -- so Monday night my eyes were painful- but I put that down to the "trauma" of the procedures that were done. Tuesday-- my eyes were pretty painful and red and blinking was getting worse since that hurt. By last night, they were really getting worse. This morning when I got up they were so matted together I couldn't’ get them open at all-- even with my fingers- until I had put on hot compresses and really worked with them. Yep it was pretty nasty. By the time I got to work, I knew there was something really wrong-- I could barely open my eyes, my lids were swollen really badly and the sclera (white part) was this nice pink-to-red color and I looked like I had been on a weekend bender. I left my sunglasses on because they were so nasty looking. Anyway by lunchtime I was near tears (no pun intended) because of the pain-- and nothing I was doing was making them any better, plus because of the swelling my vision was getting bad. So I started calling around to see if I could find ANYONE Dr. wise that could see me today. I ended up right back with the Dr I had seen on Monday.

Anyway, by the time I got there my eyes were even worse if that is possible. She walked in and looked at me and said "Those are some seriously sad looking eyes." Sooo now that I have said all of that, this is what happened-- -well she doesn’t know for sure . She removed the punctal plugs she put in on Monday in case it was an allergic reaction (bet it wasn’t because the other one had been in for 4 years) but she took both of them out (yes Major ouchie). I had no sign of infection in my eyes on Monday --although she did tell me that I have the driest eyes she has ever seen in her 19 years of practice.-- today I have a rip-roaring raging infection in both of my eyes. No idea how or why this happened. I have to throw out all the medicine I bought Monday (just in case it is contaminated by the "virus" or I am allergic to it) :-( start another boatload of medicine eye drops. One of which is the newest, greatest, best, strongest antibiotic drop for eyes, a steroid drop, and another kind of moisture drop. If I am not WAAAY better by tomorrow, I am to go back -- I am off work at least until Friday (perfect time to scrap if I could see). And I am to see her on Friday morning if I am better. Her words not mine-- "Very very contagious viral or bacterial infection" so here I sit with washcloth over my eyes, putting in one drop or the other about every 15 minutes.

I know this is getting long -- and I hate to gripe-- but here is the even better part.... Since I have a lot of seemingly unrelated symptoms and not only with my eyes now they are probably going to do a auto immune system work up on me for possibly something causing this --- according to the Dr at work and the eye Dr it is pretty amazing to have a infection of this magnitude develop in less than two days-- that coupled with the previous back-of-the-eyeball infections I have had leads them to think it may be something systemic like Sicca Syndrome (Sicca syndrome: An autoimmune disease, also known as Sjogren syndrome, that classically combines dry eyes, dry mouth, and another disease of connective tissue such as rheumatoid arthritis (most common), lupus, scleroderma or polymyositis.There is a great preponderance of females. About 90% of Sjogren syndrome patients are female, usually in middle age or older.) had to copy that because I can’t spell Sjogren's LOL-- and that definition is me all over the place.

She doesn’t want to do anything about that though until the infection is under control.

Tuesday, August 14, 2007

Cooking, eggs, and mostly rambling

On Saturday I did a lot of cooking-- which has become fairly rare in the recent months. The occasion was Mark and Nancy's birthdays. Mark and his younger sister share the same birth date. Mark is 5 years older than Nancy though. Anyway we were planning on Mark's sister Lois and her hubby Mark, Granddad (but probably not Lillian because there was a possibility that Nancy was coming) and possibly Nancy coming over for dinner and cake etc.
So I started cooking some of the stuff on Friday night because it was so dang hot and I didn’t want to heat up the kitchen. Mark's request for deviled eggs, potato salad, baked beans, barbeque, chocolate cake and strawberry ice cream.
My first issue was the deviled eggs-- Ok I cooked the eggs and waited on them to cool so I could handle them. While I was peeling the eggs I had some random questions pop into my mind--- ya know how sometimes you boil an egg and it just slips out of the shell as soon as you crack it? And sometimes you cant pay the egg to separate from the dang egg shell and membrane. I wonder what causes that?? Out of 12 eggs I had to fight to get 11 of them out of the shell~~ and when they were out they looked as if they had been nibbled on by a rat or something. I haven't had this problem too much in the past. But, in the recent past this seems to happen every time I hard boil an egg. Wonder what I have done differently?
OK then there was the cake. I have always been a good baker and have not had too many disasters when it comes to baking. I have some great recipes from my Betty Crocker cookbook for simple white, yellow and chocolate cakes and have never ever had a problem with them. This cake I made on Saturday was absolutely gross! I have never made a cake that tasted so bad-- no never. It was beautiful to look at--risen to the top of the pans, smelled good and even the batter tasted good . I must have left something out is the only thing I can figure out…..gosh did I remember the sugar? I thought I did, but that may be what I left out. I don’t think it would have risen as well as it did if I had left out the sugar though. I may have to bake another cake just to see what I left out and to see if I can make it work.
I am having some issues with my eyes that are really kinda worrying me-- they are so sore and painful. And red. I hate having problems. Come to find out Judy, my cousin the OD, had discussed the complexity of my case with my history of infection and dry eye, weird family history etc. with one of her Ophthalmology friends and he said I probably should never have had the LASIK procedure. Course she only found this out after I had my surgery so it is a case of 20/20 hindsight. Anyway she suggested I go to see someone who specializes in corneal problems. I had some corneal scratching and really dry spots. I asked her what the worst case scenario is and she said pain-- probably will not loose my sight unless something unexpected happens. Can we say scared to death here? Oh well if anyone is reading this and feels the urge -- please say a prayer for my eyes

Saturday, August 11, 2007

so sad! I cant find my friends

OK-- guess i am a complete doofus-- i can not figure out how to find someone i know is on here grrr

Friday, August 10, 2007

new --

I decided that "my space" didn't allow me to check my spelling and add the pictures of my work very easily so. . . here I am. I have also seen lots of people I know from Scrapbooking that have their blog here.. so since i am a joiner and not a leader --done deal here i am-- i am not a very prolific poster but sometimes i get in the mood and will post a bunch.