OT April Chit Chat

[agate]

Positive vibes to everyone who's been having health problems.

Parsi, your sister lives pretty far away from you, or no? I hope you'll be able to stay in contact with her during her hospital stay.

[Parsi]

Agate, she lives in Wisconsin. I don't know how long the hospital stay will be, but she's hoping to take off not more than a week from work.

[agate]

Parsi, when I had a parotid gland removed--but this was in 1987!--the expected hospital stay was 5 days. I left after 3 days though. I dislike hospitals and couldn't rest there, and it was all right with them if I left as long as I no longer had a drainage tube, which I think they called a Jackson-Pratt.

I did have to treat the incision at home but they showed me how. It left a fairly long scar.

They may have simplified this surgery by now. I hope all will go well for your sister.

[stillstANNding]

Agate, Jackson- Pratt are indeed those collapsible flying saucer drains! Such a memory you have bringing back so many memories for me from when I worked. Ahh.

I don't know a thing about parotid surgery- just to be clear.

[agate]

ANN, I've never forgotten the name Jackson-Pratt because of the very significant way it was presented to me.

I was in the hospital bed wondering what the odd tube was that was extending from somewhere near my ear, and I asked the nurse while fingering it.

"Leave that right there! That's your JACKSON-PRATT!" she said, and I had the impression I was supposed to know immediately how major an item this was, from its important-sounding name.

It was important too because it was what kept me from being able to leave the hospital sooner. They had a firm rule that no one could leave with a drain still in place.

[Jeanie Z]

:) Hi everyone. Gary I hope you are well on the way to feeling good. I'm saying prayers fro you Peg and Parsi and your relatives fighting cancer.

David's tests have been sent to the transplant team again but we have not heard anything. The doctor who does the chemoembolization says that treatment is only palliative (slowing cancer) not a cure. We guess he will be having those every six or eight weeks until he makes the waiting list.

David sent a copy of the tests to his sister who is a nurse practicioner and she will have a doctor look at them. David wants to know how long they think he has to live.

I have zip energy as I think the worry has depleted my reserves. Take care everyone. Jeanie :)

[stillstANNding]

Jeanie,

I think about you every day. Of course you have "zip" for energy. Just be there for him (what he allows) and make sure your needs are being met. You have to look out for yourself for a while.

Love & chocolate,
ANN

[Gary]

Worst flare ever. There is nothing tht either doesnt work right or numb. I did the 4 days of IVSM and am on my 2nd day of oral taper. That being 60mg a day. I went to the er last week and did not have a kidney infection. But boy it hurts and the ALL the spasams are kicking up. So I gotta wonder. All the extra cathing probably isnt helping either. Usually by now I am feeling better and have energy. Dr is not in the office today and I was just there yesterday. I really hate using the er as the clinic. I have some Xanax tht has been collecting dust in the cupboard for a couple of years and I am going to give it a try.

Ready to try MMJ.

Sorry for the rant my wife and family tries but until its your mess you have no idea.

I am off to the medicine cupboard and see if the good fairies have left some cure all pills.

[SalpalSally]

Thinking of you and yours Jeanie (HUGS)

Gary that sucks sweety.. Good luck at the medicine cabinet. (HUGS)

[Cherie]

Renee,
So many have stopped taking DME now it's not funny. JACHO and other credentialing agencies make it a liability to an organization to accept even gently used equipment. You might try Shriners. Also, we have a funeral home in our town that takes donations and gives them away to anyone needing them.

Gary,
Crap! So sorry your body is doing this to you again. A news release came out of AAN today that studies are showing that 1250 mg of oral methylprednisolone daily for three days is having almost exactly the same impact as IVSM 1000mg daily for three days with no difference in side effects. It is easier on the patient and more cost effective. I think I sent you the link to the article earlier today.

I have just finished my latest project. I have made patterns for two different styles of cooling vests that take inserts from the first aid aisles at the drug stores (or may use Polar Product inserts or even Steele Vest inserts. Made a vest out of each pattern and have designed the patterns for people to use. I've added outside pockets for keys, cell phones, wallets, etc that none of the commercial vests have and have changed some of the necklines and contours. I like mine better than what is commercially available. BUT...it takes 6-8 hours to make each vest, $20+/- in materials and $15 to $45 in cooling packs so it is on a par cost wise with the commercial vests. But at least with mine, people can make them to suit their personality and color preferrence.DSCN2872.jpgDSCN2875.jpg

[Virginia]

Hi to All,

I know I have not been posting like I should, but I will try to bring everyone up to date with me. I actually do read and keep up with everyone. I try to get on pretty regularly, but most especially with Jeannie's problems, I like to know what is going on.

First of all, Jeannie even when I am not posting you and David are in my prayers.

Gary, been thinking of you a lot the past few days. You have a lot on your plate. It seemed that you were going along doing pretty well there for awhile and now things are hitting again.

Rene, glad you are getting some updates to your house. It is nice to be able to look at something that is a little different.

Ann, you seem to be walking very, very well, but I can't remember what you were like when you started with the PT. I assume you were walking, but just not as far.

Agate, you seem to be doing the same with the same good attitude. Thank goodness for that.

Sally, you also seem to be alright, with your ever constant smiling self. That is how I think of you. Always with a smile on your face.

Howie, sorry you have not been sleeping too well. I have that problem if I do not take something, so I can relate to exactly where you are. I hope that by now you are getting some sleep.

Cherie, I like your cooling vest - very fashionable! A lot different from the one I had that was an ugly blue and not comfortable. Now I have given up going out when it is that hot, so I have not used it in 8 to 10 years.

Parsi, read about your Sister. I do hope that she will be alright.

Peg, I am sorry your stem cell therapy has started to wear off. I read that they are thinking about doing it from bone marrow. They would take some of our own bone marrow and get the stem cells from there and harvest them and then inject them back into our bodies. So now, I am saying hurry up - AGAIN!

Lorraine, hope your fatigue is better.

Gabriella, and all others I want to say hello and hope you are all doing well.

As for me. First of all, I got new window treatments in my living and dinning area. I had plantation shutters and had not had anything over them in several years. Finally, I wanted a change (after I got it painted this winter) so I had some made. They are very nice and it does help since I spend so much of my time here alone.

I have been reading an awful lot lately. Actually, I know that it is probably too much, because I do not try to interact with other people like I should. I am becoming reclusive, something I never believed I would or could do.

I started Physical Therapy last week. I have to drive 45 minutes each way, but I am seeing a girl who was trained to help MS people. I felt that was very important. She is hoping to get me a little better than I am now. I still do my own shopping by going to one store at the time as many of you probably do. I don't think she feels she can change that, but she is hoping that when I go to a store in the mall or some place that I want to look around before buying she can get me a little more time than I have now. Also, maybe a little more balance. She says I do not need a cane. She was glad that I have been doing Yoga all these years and I am to keep that up in addition to anything more that she gives me. I feel like I am always exercising. I do one set of the ones that she has given me then later I do Yoga and then I do another set of her exercises.
I hope that it will all be worth it.

The weather here has been hot then cold then hot and cold again. However, I had rather have that than constant heat. I already dread the summer heat.

Everyone take care and I will talk to you all later.

Virginia

[Virginia]

I forgot to tell everyone something that happened to me last week. I got a telephone call and it was a very heavy accent, and reminded me of when I was getting help with Quickbook payroll system at work, and I was getting someone in India.

Anyway, this man kept trying to tell me that my computer was going to crash. He said it is not a virus - it is an infection. (Took me a long time to figure out what the heck he was saying) I told him he was crazy if he thought I was going to open my computer to him. Then I hung up in his face.

Next morning I got a call about 6:20A.M. That alone was enough to make me mad, so I hung up real quick that morning.

That afternoon I got another call and I told him that he was going to have to put someone on that could speak good English that I could not understand him. He waited a minute and I am not sure if it was him that came back on the phone or someone else. I could understand a little better. He said Microsoft had gotten errors from my computer, and had hired them to fix it and that they were the only ones who could do it. I asked if he was calling from India. He said New Delhi, India. I told him to give me the number for Microsoft, so after that going on for awhile and me telling him that there was no way I would ever turn my computer on and open it up to him he gave me a 1-800 number for microsoft. When I hung up I called it and it was an unmaned number. It just rang and rang, no answer and no answering machine.

Have any of you gotten any calls? I felt like I was being watched when I came on my computer for several days.

[Cherie]

When I get someone in a call center there, I insist on speaking to someone in the US.

[Ikoiko]

This is a public forum. People of all races and nationalities read and post here. Bigotry does not belong here.

[Cherie]

I am sorry Ikoiko. I have removed most of the post. I disagree that it was Bigotry but I do see how my words might be a cause for concern. Thank you for bringing it to my attention.