OT September Chit Chat

[SalpalSally]

_{~TO PEG~}

[agate]

I just found out Peg hasn't been able to get in here since the board was down. Hope this can be fixed soon.

[Cherie]

Haven't seen Gary either lately. Wonder if he just doesn't have access to the net with the fire or if he;s just too busy to get here.

David is having bouts with pain and passing gravel from the kidney stone being blasted. Vicodin seems to help and he sleeps but I don't think I got two hours last night as this all intensified just as I was dropping off and never was able to really get back to that place of good rest/sleep.

Went to our friend's wake and funeral this morning (and early afternoon) and now we are getting ready to go to the annual dinner/dance for our boat club. Not really looking forward to it...tired. We are likely to come home soon after dinner unless conversations with friends is too good to leave.

[agate]

I have a message from Pegakafarmgirl. She's still trying to get back in. Her last post here was September 6. She can't figure out what the trouble is. I hope that the admins will come to the rescue soon.

She's concerned about everyone here.

[Gabriella7]

I've had trouble getting back into the main forum also. If I click on my icon it will take me to the archives. I can get in by using braintalkcommunities.org and typing it into the address. Just my experience.

Gabriella

[Cherie]

sorry to hear folks are unable to get in. When I got the tnotice that the forum was down again, it included a link for updates. I added that to my favorites and was readily able to gain access as a result when it came back

Today was a departure from thr recent norm of working in David's RE/MAX office as the Transaction Manager. I was back to my love...teaching in the MS community at the MS DREAM Center in Cranston RI. I did a talk on relationships, sexuality and Intimacy while living with a chronic illness. And I talked about what happens when you, the PWMS , needs to care for an ill or injured significant other or parent or family member and how to keep your balance and stay well in the process. It was so well received that my 50 minute tallk extended into 2 hours and 45 minutes of Q&A and then individual discussions and direction and referrals. I miss that place. I miss working with these people on a weekly basis but my new job is preventing it.

On the plus side the new job is getting more and more busy with each passing week and Realto5s are trusting me more to handle their files from time of signing of sales agreement to closing. I heard from 5 different lawyers this morning that the information that is coming out of my office is so incredily helpful and clear and self explanitory that it makes every transaction easier. And the agents that have always done things themselves are slowly coming over and giving me a file to handle and being pleasantly surprised not only with how smoothly things go , but with how fully, i keep them in the loop with every conversation along the way. This week there is no down side but that could change next week. I am needed and appreciated and I am the "Mom" in the office and seem to be well accepted and respected. It is a good place to be.

Mom and Dad are another issue that take a good 4-6 days of my presence every 3.5-4 weeks. Siblings are running concerns to me to solve or give input and my parents are insisting they don't need others than me involved in their care. Dad is willing to use my office visit template each visit for every doc to give him back his voice. It's what I was born to do,'

On the other side of things, David has been passing kidney stones now since the middle of August. Lithotripsy (blasting the stones with sound waves last Wednesday,) has seen him in agony at least once or twice a day wih pain and needing medsl We can anticipate this process taking up to 6-8 weeks while the pulvarized stone makes way down the urinary tractl He is one miserable puppy every day for part of the day lately.

[agate]

Cherie, that's too bad about the stones. The pain is next to unbearable IMO. Hope he can be painfree soon.

Peg hasn't shown up yet but she's a busy lady if ever there was one.

Nice to see Harpist back! Another person who was already well established here when I signed on in 2001 if I remember right.

Gary, everyone here is thinking of you and hoping you're managing to put your life back together after the terrible fire.

ANN, Copaxone every other day? Have you been doing this yet? I hope you'll report on how it goes. It will surely be nice to have fewer shots to do.

Jeanie, thinking of you and your David and your mother and hoping that situations are improving.

Frog42, how is the MRSA treatment going? Are you better?

Jendie, it must be almost time to move for you. I hope you'll like the new place.

And Virginia, I hear you about a yard being too much to handle. I gave up on yard work many years ago.

[Gary]

Despite rumors to the contrary I have not fallen off the face of the earth.

Waiting on the insurance company to issue a check for some temporary living quarters. I found a motorhome that is in good shape and enough room that one person does not have to stand in the sink while the other person walks by. I was sort of hoping on having the check today or tomorrow but I am thinking Thursday. The insurance company runs on their own schedule, but I can not complain too much they have been right there every time I asked a question. The house is another matter. So far the bids to rebuild are a lot more than I expected. Some where between $110 and $120 a square foot this is a turn key price and exactly the same size. Been a LONG time since I bid on a house build. Its a good thing that I insured for replacement cost. Rather than a set dollar figure. I did consider dropping the extra coverage and upping the deductible a couple of years ago as the price was getting high. But I figured that if I have a older home and if anything ever DID happen..........

Having a lot of problems with my legs and lower back I am not sure if all the stress is causing a problem or sleeping on an air mattress is the culprit. I am trying to deal with one thing at a time. Oh and y the way I started listing stuff that was lost and began with my wife's sewing/quilting stuff. Oh my I now know more about sewing than I ever wanted too. Ha ha. We have been married for almost 30 years and we have lived in the same house for the last 18 years besides being pack rats I cant believe how much stuff we have accumulated. Try listing everything in one room of your house without looking and then take that list into the room and see how much stuff you have missed.I always thought that the amount of insurance I carried on contents was excessive bu the agent told me that it might not be enough and that I would be surprised at what it would cost to replace all of it. Boy was he right.

Thanks again for all your kind words, thoughts and deeds

This too shall pass.

[Frog42]

Agate, they tested for MRSA but it turned out to actually be cellulitis. I have to keep the leg elevated as much as I can, which is fairly uncomfortable. Less so than being in the hosp. though!

Gary, best of luck getting things worked out as quickly as possible.

Cherie, Peg, ANN, Jeanie, Gabriella and anyone I missed, I wish the best for you!

[Cat Dancer]

Gary, I'm so sorry to hear about your house fire! We went through that ourselves some years ago. You are surely right -- replacement value insurance is the only way to go, both for the house and the contents. And doing the inventory of what is lost is heartbreaking. We still, even years later, go to look for something and then remember...oh yes, that was lost in the house fire...(or in our case, in one of the two floods that happened to another house we had later...)

One thing that we have done with THIS house is to take pictures of every room, and the contents of every drawer, cupboard and cabinet, closet, etc. That's much easier these days, with a digital camera or cell phone. And of course update the pictures every year, or whenever something substantial in cost is purchased (like a new TV, or computer, or new furniture). Then we store the pics in our safety deposit box at the bank. The $15 annual fee to maintain the box seems worth it, having gone through the 3 calamaties we had!

We have a family joke....my (now late) brother was a minister: The first house we bought burned down. The second house we bought flooded....twice. So when we bought our third house, I called him up. Reminded him of our first and second house-buying disasters. Asked: "OK, fire and flood...what's next?"

He thought a minute. Then said.. "watch out for locusts. Or maybe in your part of the country, an invasion of crickets....."

So far we've fared better with this one...

Yes, stress can do a number on the MS symptoms. I went into flares after each of our calamities....not fun, having to deal with the flare while dealing with the insurance companies, trying to clean up remaining household items (of which there were some after the flood), trying to find temporary housing, dealing with pets, all that. Take care!

[Cherie]

Miss you all. Gary, it's not just trying to remember what was lost, but adding to it the things you know you had that are no more. Trish's quilting stuff is a great example. And photo albums...how do you put a price on them? Here in RI. it's $150/sq ft. It always amazes me how much more it takes today what was built for less.

I am so very grateful to Missy and her family for providing a place for you to live in the interim, If there are expenses that can not be met other ways, please do not be shy about letting us know!

[renee]

Virginia et al- I haven't started Copaxone yet.

I went to the DE shore about two weeks ago with one of my sisters.
Her 60th and just past my 58th.
She is up at the crack of dawn-not me.
She is an alpha dog, I am a beta plus.
At 10 a.m., she shoves fresh donuts in my nose to get me up.
Doesn't work... immediately.

I didn't get on the beach but found areas of packed dirt with some sand between boardwalk and beach proper.

One afternoon we watched a group of 4 wheelchair adults being pulled one by one over the sand.
Noone had a stroke doing the haul.
Later I saw that it was a group of developmentally disabled adults using very standard indoor wheelchairs.
Some chairs with very thin tires.
I think the trick is to pick a flat beach and a strong armed assistant who can pull you backwards on
the rear wheels. At least two of the assistants were women.
More possibilities for those of us craving beach.

Our last evening we knocked back a bottle of chanpagne, with cheese and and some carbohydrates as the sun went down.
And were very loud and silly and girl like.
Oh yes. And there was margherita night. HMMM.
One margherita and I was making fine seal barks through my straw.
Too much PBS.

I got shut down.
Regression or Tequila?

The part time work is coming in.
So here I am back home with a long list of must dos.
Less sun and autumnal temperatures.

I should have a Copaxone delivery date and the Copaxone nurse should be calling soon.
Won't be as fun as margharita barking oceanside but I''ll be able to say I take a drug
that can make me feel like i'm having a heart attack.
Good conversation starter, eh.

-R / who wants a personal secretary and chef

Can anyone use a new Reb-inlector and 3 weeks of Rebif?

[Cherie]

In NH for a couple of days. Board of Director meetings all morning to develop budgets for 2013. I'm treasurer of two homeowner's associations here. Rainy and cool here (30s at night and 50s in the day)

David is still passing the remnants of the kidney stone that was blasted on the 19th. Seems to need Vicodin 3-4 times a day even with ibuprofen along with it. He has two or three hours ....sometimes 6-8 hours...feeling well then the spasms in the ureter start again and stuff works its way from kidney to the bladder over the course of 2-6 hours. I'm not letting him drive much lately as he is under the influence much of the time.

Home in the morning, work for 4 days then off to NY to help with parents again. Sister Tricia who is Mom and Dad's Health Care Proxy, had an MRI of her knees last week and both are a mess. Sees the ortho Monday and , depending on what he says, may need to care for her needs which means Mom and Dad will need rides to three appointments starting Thursday thru Tuesday the 9th.

Work is continuing to be quite busy with two more files coming into my office Monday. I feel, at times, like I am teetering on the edge of exhaustion and resumption of symptoms but somehow, seem to be able to stave it off with rest for several hours. I get to the point (by 3 in the afternoon) where I can't think clearly and have to go home and am not bouncing back lots of days. Saying "no" more often than I had planned to.

Blessings to all...holding you.

[Gabriella7]

Medical Update

Here's the latest on my husband, Joe. He had the swallowing barium x-ray and got the word that he has a very serious swallowing problem. This is very serious as he has lost down to 130 from his normal weight of 165. His food has to be very soft as he can get aspiration pneumonia very easily if he swallows food and it goes down his windpipe instead of his esophogus. This is happening every time he swallows.

He was not able to wear the back brace and it did nothing for the problem as he was still bending over from muscular weakness. He is going for PT 2 times a week for 4 weeks. We will see the neurologist this Monday. He sent in all the information to be seen at Mayo Clinic, Jacksonville, Florida. However, we got a call back to tell us they have a 6 month back log of patients to be seen.

We appreciate all the prayers......keep them up......as this is a very serious situation. I don't think he has realized just how serious it is. I have mentioned that it could be ALS but he doesn't know what this is even though he has been involved in baseball all his life and I know at one time he would have heard of Lou Gehrig's disease. He has been playing golf at least twice a week for the past 10 years but had to stop recently due to his illness and this has been very hard for him.

Blessings,
Gabriella

[agate]

So sad to watch loved ones having to give up doing things they've always enjoyed--Does watching golf on TV something your husband might enjoy? I'm sure it's not the same as being out there though.

I hope it won't be ALS, but if it is, I'm sure you've heard of Stephen Hawking?

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He was diagnosed with ALS in 1963 and given 2 years to live. He's still alive--he must be about 70 now.