OT: Chit Chat (mid September)
 

OK...Till Peg shows up and fills us in on the harvesting and Farmer Joe and the sacred cows, lets, get reacquainted.

ANN and Mrs D and Paj and Craig and I have all been doing some vacating away from home this summer. Please let us know where you've been and what you would recommend if you've done something that is not just visiting family (or if you wish to recommend that!)

The first half of our summer was almost too busy. Our Rotary Club does their big fundraiser for the community mid-July with a goal to raise $100,000 for charitable programs in the area that fall through governmental cracks. We've been doing a Hot Air Balloon Festival for 28 years now and I've been heavily involved with it for the past 10. Finally trained someone to do my multiple jobs so that I can support instead of carry a lot of the work next year.

Dave and I went to a music camp in the White Mountains that we've missed for the last two summers but have been attending since 1990. Good food, good friends, good music. Dave's been doing a lot of kayaking this year and is playing around in the surf this year for the first time. Still sailing but not as much.

We are in the process of adding an addition to the house to be a therapy room where water exercise will reign but there is also space for mats (yoga anyone?) , treadmill, stationary bike and weights. I may have MS but my goal , now that the foot is as healed as it's likely to get, is to tone and get some stamina back and prevent further injury.

I hear from dayle once in a while. She's still having a rough go with her digestive issues and her daughter has been ill most of the spring and summer to boot.

Laz has bought (on craig's list or ebay...I forget) a good sized sailboat, refurbished it and is sailing with his wife during the summer vacation in the waters off Oregon and Washington. He's loving it!

Eli (kidoftheking) is in the process of moving from the south west to the north central part of the country at the end of this month.

ANN (stillstANNding) has spent some time on the Cape but has had some trouble with MS flaring with the hot summer we've had.

Dee is back on Tysabri and thrilled. She's fully recovered from her recent surgeries and looks great.

Howard has Pinky basically restored and is still writing poetry and is awaiting his annual visit from Sven.

How is laura doing with chemo...and paj's DIL? We haven't had updates in a while.

And Patrice? How is the foot?

Please, catch us up on what has filled your life while the Boards have been down.

Wow, Cheri you do keep up with everyone.

Our summer was spent visiting or being visited by our 10 grandchildren. The newest granddaughter was born on June 22. I spent a week in NJ helping with Kendra's other 4 kids. We did go to Snowshoe a ski resort in WV for a few days. There are lots of summer activities there, however we spent our time riding trains. Ken and our grandson love trains. Cass Scenic Railroad has a really neat steam engine ride.

I spent a large part of the summer learning to drive safely with my new hand controls. It was a struggle, but I think I finally feel safe enough to drive on the big highways. I'm still really nervous about heavy traffic areas.

Greetings to all, Betty

And so it goes
 

Greetings from the spud state,
Had our first mesurable rain since spring today. Should be a great help to the fire fighters it has been a bad summer for forest fires. The rain didnt help the onion farmers though especally since the price looks to be really good this year, of course I DONT HAVE ANY PLANTED!!!
Went to the Doctor today same old story another handful of pills to take. I am going to try Cymbalta its supposed to be good for depression as well as pain. He also gave me somethig for sleep as I havent been sleeping well for some time and its beginning to wear me down. Ya know I have just about been ready to pee on the electric fence to see if that would help, well not really but I am getting desperate. Enough of that....
Went to Moscow Idaho the U of I had dads weekend and I went to spend some time with my son, The first night I stayed in the frat house you remember when you told your folks, if its to loud your too old..... well I am too old I went to town and rented a motel room for next two nights!!!! All in all had a great time he is majoring in pre med and seems happy and is enjoying the college life. Of course I had to make a close inspection of the frat house, fire escapes, alarms, kitchen facuilites, study halls, the steam boiler ect. and report back to momma as he is our youngest.
I cant really complain as our kids have never been in trouble and have always gotten good grades and since they both have had diabeties since they were small they have usually watched their health.
Now that the last one has left home I think that I could get used to this empty nest thing.
I am glad to see old friends returning to BT2 and welcome to new friends as well, if you need to know anything you can ask me as I know everything, since my wife says Im a know-it-all. She didnt mean that sarcasticly im sure.

Just spoke with sheila (PCat) and she's going into a flare now that the funeral is over and the folks have dropped away. Forgetting things like how to lock the front door (after 15 years of doing it). Doing some work with a friend the other day and broke the sewar pipe so she went to Lowes to buy a new piece and wasn't sure of the length. Planning on putting it into place with a large tomato can to make the bridge. Her mom is trying to help her organize Chris's clothing but she says it's like the "blind leading the blind" with both of them so impaired.

Nice to see Betty and Gary Posting. Now where are the others who said they'd give it a go?

Well, I think I did say I would give it a try. However, news from my corner of North Carolina is pretty sparse this summer. I am amazed at what some of you continue to do in spite of MS. However, I do still work part-time, and that takes up some of my time.

I went to Hilton Head, S.C. week before last. It is nice, but it does just seem to get more and more crowded. Stopped by Keawa Island on the way back. It was really beautiful. I may go with a friend to his college reunion at Wake Forest in a couple of weeks.

This has been one HOT summer, and I am glad to see fall just around the corner. I don't think I will mind lighting the gas logs. I always enjoy that time of the year.

MS for me means having some kind of bad days, but also some that are fairly decent. I am really looking forward to hearing about the experiences of the people that go on Tysabri.

Cherie, do you ever hear from XO (Mark)? I've missed his imput regarding the medicenes and research.

Hope some others join the board soon, as I am not too good at this part of it.:) I am just trying to fill in a little until they find us.

Virginia

No Virginia, I have not heard from Mark. Perhaps I should send him an email with the link to this site. Actually, I could probably let a dozen or so folks know about BT2 from the email addresses I do have.

Just got back from a Board meeting. Got talked into running for another 3 year term to be elected at the annual meeting in November . It's only 4 meetings a year. Two are at our condo in the mountains but two are evening meetings 2 hours from here (like today's) so it's a 2-3 hour meeting plus 4 hours of driving time. These are the days I take my anti-fatigue med.

I may be spotty in my check-ins over the next few days. Am doing some upgrades to my computer so I'll be offline for periods of time so if you don't see me till sometime early next week...don't worry. I'm OK.

This just in from Jeanie Zeis:

Cherie,
I emailed all the LW's the site last week. I heard from Peg. Her sister died 8/18. Her son is in Kuwait and says the temperature there is 113 degrees. Peg is going to start on Tysabri.
I was in the hospital for 3 days. I had a bleeding diverticuli. Feeling better now. I had a few other emails back but none with updates on them. Love, Jeanie :)

Talked with PCat for a little over an hour this afternoon. Her heart is finally realizing the lonliness of having lost her husband and the head knowledge that it is the best thing is being over ridden by lonliness and pain. She appreciates the cards and letters from this community but it may be time for a second wave of support. If you wish to write her and have not gotten or have misplaced her address...PM me.

Ok, I promised to try and be a more active member. So I thought I'd better post soon.

I went to the mall today on my scooter for about 4 hours and came home exhausted. Had to take a long nap. I even took my Provigil. I want more energy.

Cherie, how do you drive 4 hours round trip for a meeting with everything you have going on at home. I hate staying home, but I just can't keep going all day without a nap or two. Betty

Usually David will drive me but he had too busy as schedule to do so. I just took half of my dexadrine (anti-fatigue med) late morning and it kept me going till 11 at night. The next day, I have to admit, I was not overly energetic and felt like I was slogging through mud.

hello my dear friend!!!
 

Good to hear from you, reading your posts I feel pooped. How can you do so much. I am excited to cook a meal. I miss the old me. I hae novantrone this Wednesday and my blood count was up to 10.8 what does that mean?? Infection?? maybe that is why I am so pooped. I see dr on Monday and am wondering if I have a urinary infection or the flu?? What is that drug you are on for fatigue I use amadintine. Hugs, Christine

Dexadrine? It's speed! At least, back in the 60's it was one of those street drugs that commanded a lot of requests. Now it's a Category IV amphetamine so cannot be refilled. That's OK because I use it so rarely...like on days like I just had. I'd be wiped just thinking about what I had to do, take the med and within an hour, I was just doing without feeling any side effects other than a sense that I was thinking more clearly and working more efficiently and not totally cratered. Amantadine was my first anti-fatigue and I did not feel it helped at all but it seems to work really well for some people.

I hope Peg joins us soon. I miss her.

Which blood count was 10.8? White blood count? If so, it could mean that you are anticipating an infection or are fighting something low grade. I remember way back when 12,000 was the upper limit of normal and now it's 10,000. Good luck with the Novantrone. Know what? I haven't seen a Novantrone check in thread here like the old forum had. You might consider starting one and get input from folks who've actually taken that drug.

Yodeladyhoo!

We are baaaaaaaaaaaaack!:)

How did you guys find this board? I visit BT every day and it still has the message that they will be back soon. I found out about this on MSWorld (Thanks lazarus).

Things are great in FLorida. All storms curving north and east. Yes! We are totally moved back home, and there is very little left to do inside the house now.

The next challenge is to cut down partially fallen trees and cut them up. The heavy equipment destroyed the sprinkler system, so that is in line for repair as well. And, we have to paint the ouside of the house because of JEanne.

Good to see you all again.

Welcome home!

Winter is comming!!!
 

Hello,

Well we had a tiny bit of frost on the windshieldat 6:00 AM this morningnot enough to scrape but never the less it was there. Time to cut the grass one last timeroll up garden hosesclean out the the pellet stove and the wood stove. Put storm windows back in. This year I not going to wait till the snow flies to be ready! (yeah right!)


As ever,

It was mid 40's here this morning and the furnace was running when we woke. We have friends visiting from Austin, TX and they think it's cold!

On a sad note: The first friend that I knew had MS went into a wheelchair a few weeks before I was diagnosed in 1994. He became bedbound 2 years ago. Avonex was the only therapy his neuro would prescribe for him. Swallowing difficulties led to a feeding tube. Incontinence led to a suprapubic cath. He died yesterday in his mid 60's.

I am so sorry to hear that Cherie: Please accept my sympathy. Why was avonex the sole drug he was allowed?

His doc felt that, although each MRI showed new and active lesions that he could not tolerate the others because he was having such flu-like symptoms for days after the injection. At least that is what his wife told me. Why they did not try Copaxone, I'll never know. Such a waste:(

Yeah. It's hard enough to accept the death of a friend, but when the quality of treatment is in question, it is so frustrating.

We'll I'm packing my bags and getting ready to head up Rt 95 for a short visit in NJ with our daughter and the 5 grandkids. I love these trips, but I'll be exhausted when I get home. Kids range in ages 8 - 3mo. Lots of noise and fun. My daughter usually goes out the door within 15 minutes of my arrival. It's her only chance to shop and catch up on all those things that 5 kids don't like to do.

Wishing all of you a good week. Betty

hi cherie
harri put the link to this site up on Aug 24 and I kept meaning to post

As soon as I packed DD off to college, I went to the dr for something I had been putting off out of fear. I'm just recovering from a nasty infection I picked up from potting soil. It was the disease no one knew what to call and I was at oncologists, dermatologists, immunologists..more pictures taken of me and my cooties than I care to remember. Steroids are making me gain weight again which is not fun.

It is nice to see BTers here, under one "roof"
Hope everyone is well

tere

Whoa Tere! I didnt know you could get sick from potting soil!