OT April Chit Chat

[renee]

Holiday diversion and science magic.

"Thrill children of all ages in the best of times or the worst of times."
-Charles Dickens

1. Take an unsquashed marshmallow Peep.
2. Keep it away from easily flammable items and people
3. Light a match to it.

If conditions are right you should have a flaming baseball on your kitchen table.

Bon appetit

[Cherie]

DSCN2773.jpgSaturday and Sunday were intense activity days for me and I spent most of yesterday like a couch potato and did not do much today. I am starting to feel symptoms that had virtually resolved with the two years of Cytoxan. Kind of wondering if I have a UTI cooking.

Heather's car died so she is driving David's van and he is driving my new Prius for work so for the next week (except for a couple of appointments) I'm sticking close to home. Tomorrow doing a talk and demo of cooling products from several different companies at the MS Dream Center. Thursday I see the neuro for the first time since I really started feeling better after the Cytoxan. I can close my eyes without tipping over for the first time in about 15 years and can also balance (briefly) on one foot for the first time in that long.

Have returned to sewing. Becky is being ordained to the Deaconate in another 6 weeks and to the Episcopal priesthood just after the first of the year so Vestments have been coming off the sewing machine. I've gotten a red and gold stole and chasuble done and her ordinary time (green) deacon stole done. Just got a call from JoAnn fabrics today that the crosses and trim I have had on back order for the Ordination stole are in and I can pick them up tomorrow. I cannot get over how costly these are as I search online. I am able to make lovely ones for about 1/10th of the cost. Attached is a photo of the red priest set that is done.

[Jeanie Z]

:) Hi everyone. Cherie that is beautiful. You are quite the seamstress. Congratulations to your daughter.

David update: After being turned down for the liver transplant they sent a list of tests he needs in order for them to reconsider. David had a bone scan, chest X-ray, CT scan, PET scan. All showed the cancer tumors are only in the liver for now. Those tests were requested on a disc by the transplant board and they would reconsider. His doctor did not like it that David went to the patient advocate as the doctor had not given him information on the test results.

Today he told David's primary doctor that a transplant is off the table. The report from the transplant board said they would reconsider, so he is going to have to go to the patient advocate again and maybe even up the chain of command. Thursday at 6:30 AM he is going in for the second chemoembolization. Hopefully the tumors will shrink more with that. Thank you for the prayers. He is so stressed over this and that does not help his immune system. Jeanie :)

[Gary]

Jeannie sounds like things may be taking a turn for the better , glad to hear it. I am a big believer in patient advocacy some times we have to stand up for ourselves (or our SO). Please vent any time you feel the need, the stress is bad for BOTH of you.

Cherie just wonderful. My wife will spend hours and hours on the smallest sewing project it is a stress reliever (we have stress?) for her. She makes some pretty intricate wall hangings, lap robes and quilts. Getting her to give one up is like pulling teeth not that she doesn't want to she is always afraid that it isn't good enough and no one would want one of her items. I have argued with her for years that they are not just a "throw rug" but they are a work of art. I have NO creative talent and all my taste is in my mouth I wish that I could create 1/2 of the stuff she does.

Speaking of my wife she has a terrible UTI the doc gave her an antibiotic and she was getting worse so he put her on something called Macrodantin the pharmacy had trouble finding anyone in our area that had the stronger one that she needed. They are doing cultures to see what type of bug is causing it. I guess that the current standard for insurance is try the normal course of antibiotics and if that doesn't work THEN do lab studies. The doc said that he does not agree with this treatment plan but this is what the ins requires they get mad if they run too much lab tests. I know we have talked this subject to death but it seems ridiculous that paper pushers with a high school diploma decide what is best for us. I am going to nag her to call the office back as now she has pain that sounds like it is going into the kidneys. As I have had more than my share of kidney trouble and infections including MRSA I am really concerned about this.

Our renters brought about 5 or 6 lbs of venison ribs over so that I could marinate them and put them in our smoker and BBQ them they brought everything over for dinner and we had quite the BBQ on our back deck. They figured something was amiss as my wife went to work and came home and went straight in the house. Since spring has arrived or at least for a few days anyway, it was really nice, light breeze and 72 deg. I have spent literally years perfecting my recipe and process for fixing wild game and anyone who has had game that smells and tastes nasty will appreciate what I mean. It does take a couple of days to get everything ready but it is worth it.

My MS seems to be behaving itself knock on wood. I am having sciatica trouble again. They say that I need surgery to fix it as I have exhausted every other treatment. My leg hurts and now the front part of my foot goes to sleep. I am really apprehensive about cutting around on my back. Seems everyone has a horror story to tell about failed back operations. My PCP (actually the PA that I see) has a background in orthopedics and he says that it is a simple arthroscopic deal and most people go home the same day, he did say well not you, you WILL have to stay over night at least, to make sure that my systems start back up again. And any type of procedure sets off the MS but I am getting tired of "putting up" with it. And because of the kidney problems in the past they really don't want me to take NASID and I have to save the steroids for MS related stuff.

Hope everyone else is doing well and as Peg says `keep on keeping on`.

Be healthy everybody.

[renee]

Gary- I want your doctor. I also want your renters and their bbq.

Cherie- I have never seen tie dye incorporated into 'pisky priest vestments.
It's not too late. :>))

[SalpalSally]

Beautiful, nice work Cherie. ((((feel better))))

Gary, Having seen a lovely picture of your farm, I can picture you all out there enjoying your BBQ. I hope DW feels better soon.

Jeanie, how awfull for the Doc to set you aside like that..the twerp. I hope PA gets David back on the list. You take care of yourself too. We need you.

Hi Renee, Ann, Virginia, Agate, Howie, Peg, Lorraine and everyone..






...

[Cherie]

Gary- I want your doctor. I also want your renters and their bbq.

Cherie- I have never seen tie dye incorporated into 'pisky priest vestments.
It's not too late. :>))

Actually, Renee, we have a conference center near us where the vestments are tie dyed or rainbows and butterflies. The Crosses I need for the Ordination stole came in today and the stole is all cut out so that's tomorrow's project after my neuro visit. This is going to be the most bland and trouble-free visit I will have EVER had with him since I started seeing him in 2001.

It was supposed to be windy, raw and rainy here today but was sunny and in the 60s.

We're down to one car for a while. My daughter's transmission went so she's using David's van and David and I are sharing my car.

Did a cooling product demo at the MS Dream center today and passed out the cooling program applications for the MS Foundation. Deadline for application is 6/1/12 and the applications can be found online at Only registered and activated users can see links., Click Here To Register... if you are feeling the need for cooling products you do not have or may have trouble putting in the budget. Got home and sorted and put together the stuff for the class on cooling products for the MS Cruise for a Cause in 2 and a half weeks. About 3/4 of what I am taking to demo is going home with the cruisers. The companies have been very generous with product samples for these classes.

Gary,
Trish's quilts are simply wonderful. Mine is always on the chair in my office so I can see it every day and remember how it lifted me from a very difficult place. She is one talented lady and I pray she quickly beats this UTI and is feeling better quickly. I know what you mean about the Macrodantin. We had to try 3 different pharmacies when I needed a high dose of it to find one that had it and it was not one of the larger chain pharmacies but a small single proprietor pharmacy that had it!

Jeanie,
I'm encouraged by the results David got from "escalating" his case. I just feel he's going to be OK.

[stillstANNding]

Hi all:)

Things are well with me <thinking it is well, with my soul, it is well!>.

After our trip to Oregon, we had my BD followed the next weekend by Easter and now this weekend is Pizza Guy's BD. Hoping for a rest after that.

I am walking well and farther. Eating well, too. The increased walking causes increased nighttime spasms. Other than that, things are peachy.

Jeanie, I'm glad things have a better outlook. My prayers are with you both.

Renie, stay out of the hospital. And stop playing w fire.

Virginia, hello out there. Nuthatch, thank you for sharing your love of birds. I am enjoying them w you.

Cherie- congrats on the vestments and daughter who needs them- be well and stick around.

Gary- what can I say. Glad you are doing fun things and sorry I had to leave Portland:) Really, I so loved it.

Whisper, Agate (Portland buddy), Sally, Peg, Howie and all the chatters- hello.
ANN

[Howie]

I'm here, and I don't know how. 2 days of no sleep, so I took my sleep med hours ago, and I'm STILL here. How can I do it?

Oh well, 3 days of no sleep....why not?

I hope everyone is doing well, and can sleep.
The cats seem to have no problem sleeping....darn cats.

Everyone have a great day!


.
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[renee]

Howard,
Melancholic and anxious?
Capisco.

Viva red and viva tie dye, Cherie.

My docs tell me to stay out of hospitals, Annnnn.
One (from 'jersey) called it the Big House, and another, " the most expensive hotel in the city."

My primal self won't give up fire.
A light bulb is not the same as a campfire.

Thought of the day.

People here have some wickedly nasty stuff going on.

Question to self: what is the worst thing that that has
happened to me in my entire life?

I don't know. NO idea.
Not that life has been so easy or so difficult
but because living can be worse and it can be better.

When I can't see choice or opportunity that could be the worst day.
I treat my current melancholy from the last 8 months beating
and will work for the state of up.

Found a totally crip friendly dude ranch in AZ today.
I think they supply the duct tape for people like me and there is a lift into a pool.
OMG. Someone is thinking ... outside their box.
That is reassuring.

Good night.

[Jeanie Z]

:) Hi Peg, Sally, Howie, Ann. Gary, Renee, Cherie, Agate and anyone else I missed.

David and I were at the VA at 6 AM for his chemoembolization this morning. The doctor came out to tell me about it at 9:45 am and David was in recovery. He was going to go to a room on the 7th floor. But they did not have a bed until someone was discharged, which did not happen until 5 PM. Then the room had to be cleaned first. So David spent 7 hours in recovery and I spent 13 hours sitting on my scooter. I was not allowed in recovery but they let me talk to David on the phone.

The doctor said he put chemo in all the tumors he could see. The doctor David had seen the patient advocate about came to recovery to see him. David told him he'd probably get a letter from the Chief of Staff, our Senator and Congressman. He also told him that the retired Chief thought he was arrogant. David told him he wants the tests submitted to the transplant team on a disc as requested by them. He said he would send them.

I need to go grocery shopping this evening so I have some easy to fix dinners for when he comes home tomorrow probably. I am exhausted but I'd rather go tonight than to have to do it early tomorrow. As soon as we know about if the transplant team puts David on the waiting list or not, I will post. Thanks for all the support and prayers. Jeanie :)

[Cherie]

Jeanie,
I think this is easily as hard on you as it is on David but in a different way. Holding you both.

Renee,
I'd love to hear more about the Dude Ranch!

ANN,
You sound so mellow and content

Howie,
You sound like a circuit ready to break. I'm concerned. As a fellow insomniac, I can understand the frustration of going several days without sleep or only sleeping for a few minutes at a time. It is not pretty and it can be very exasperating. Massage? My cat will knead my belly or back if I'm in bed and she feels like I need some attention. You have three to work on you. Tell them to get busy.

[Pegakafarmgirl]

Hey guys,, Jeanie our prayers are with you,, they always say God doesn;t give you more then you can handle,, well this time he did,,

weather in the heartland went from, summer, to late fall in a heartbeat, man, it got cccold ,, 25 for a low,, hope our plants make it, out there in the garden, and the cold rains from Canada. are here too,, but we need the moisture,,

Stem Cell update, I am no longer seei it working, things went from kinda good, to not so good, , maybe its the change in the weather,,leg strength,, not to good, balance bad,, and I really am a little leery bout going for another treatment,, I am discouraged, but Joe keeps me laughing,,, I just do the best I can,,

so thats all folks,,later

[agate]

Peg, I'm so sorry about the stem cell treatment. Maybe the downturn is just a temporary glitch and you'll bounce back.

I didn't know another treatment was in the cards.

Jeanie, sending positive vibes. Hope you can find some way to get some rest.

renee, that's such good advice about hospitals. The eye doc I just saw for the annual checkup was still pushing the cataract surgery idea, but when he mentioned "hospital" I tuned out.

I've had enough problems with my eyes without whatever problems might be added on when someone cuts into them. I'd go ahead with it if the low vision was getting in my way seriously but I'm getting along with magnifiers and what-not.

I've been busy lately getting used to the captioning phone. I love the way I can touch some contact's number on the screen and the phone dials the number for me. Nice to have a screen that is readable, too. My old phone has a little display screen but I never could read it well at all. Caller ID isn't much use if you can't see who's calling.

I still have the old phone nearby because it has the answering set-up. If I have a phone message, I can play it close to the captioning phone, and the message will be captioned.

Waving Hello to Lorraine, Cherie, Howie, Gary, Sally, nuthatch, Virginia and ANN who is stillstANNding, as well as everyone else who posts on this board.

[Cherie]

Peg,
So sorry to hear that the hoped for improvement with the Stem Cells has not lasted. And I know from speaking to them that they do push a second treatment (another $10,000 out of pocket) to boost the first treatment and use your strengthened cells from the first procedure to finish doing the job. Thing is there have been no clinical trials on this type of stem cell therapy...just practice reports and anecdotal write-ups. I found I could not get in depth answers and there was a lot of hedging and switching topics as I spoke with them on the phone.

Agate,
The Cataract surgery was a breeze even though I had general anesthesia because I'm allergic to local and to the numbing drops they use in the eye. I was awake 40 minutes after going to sleep for both eyes and home another 45 minutes after that. Blurriness in the left eye did not clear for about three weeks but the right eye was clear right away. Things are so much brighter. The low vision is all but resolved. I still have a scotoma in the left eye from ON and I have a brown smudge from the vitreal bleed last October but am told that is likely to resolve as the blood cells reabsorb. I would encourage you not to discount the cataract surgery altogether. Oh...no pain with either eye!


Beautiful sunny Saturday here. Dave's with about 20 other guys helping to open the docks, get the boats in and spread a load of crushed stone for the parking lot of the yacht club down the street. "Yacht Club" sounds hoitty Toitty but it's really a standard ranch with a kitchen and open area for meetings with bathrooms, showers, and storage area under it. We have room for about 50 boats on the docks and David is in charge of the Club's little 15' sailboats so ours has stayed in the garage for the past three years.

I put two big pots of Impatience out yesterday that I had dug up last fall and wintered in the therapy room . I have never seen them get this big! The stems are 2-3' high with huge blossoms! I am so used to them being colorful ground cover and bedding all summer. May try and get the lawnmower going today for the first time since last fall. I know I am strong enough to do at least some cutting right now. And there are clumps that are over a foot tall all over the lawn at this point. Dave has appointments all day to show houses after the crew finishes opening the docks so that leaves me as he also has three open houses tomorrow so cannot do it.

From our vantage point with the Real Estate Market picking up and vendors loaning money again, it looks like the recession is beginning to ease a bit. We're a little more comfortable than we've been in almost 5 years as far as having the possibility of income over the next few months.