OT,, January, Chit Chat

[agate]

Cherie, I think it's perfectly astonishing that you've been able to check in here and post at all what with everything that is going on in your life.

About changes in BT--in the old days when the threads moved so fast you'd find them on page 3 within hours, that was too fast for some of us.

I couldn't keep up with that pace, I realize now that I no longer have to try.

There's a tendency for people to get careless about their posts and say things they don't really mean with a board that is extremely active. We don't have the squabbles we used to have here.

It's as if people have been obliged to think more carefully about the few threads that are posted here.

There's something to be said for not aspiring to be vast. Just my opinion though.

[Howie]

"We don't have the squabbles we used to have here."

What, are ya' sayin', I'm sceered or somethin'? I ain't sceered of ya! PUT EM' UP!!! go on, PUT EM' UP!!!

[Frog42]

Okay, Howie, if you insist!

[Gary]

Oops I shake and hit something twice.

[Gary]

"We don't have the squabbles we used to have here."

You know that is true. There used to be some folks post that I would not even open because I knew I was going to open my big mouth.

I had one of those MS night were you cant sleep and my legs are literary buzzing don't ya just love it? Now it is down to a dull roar but at least I can move around without making it feel worse. Last night was better so I think I can avoid a trip to Dr unless blood pressure goes out of control. Nights like that remind you why you REALLY hate MS.

I told my wife it was because I got a haircut. I hate going to the barber. Growing up you had 2 choices y dad cut your hair or you went to the barber and paid for it yourself. As soon as you earn enough money you went to the barber. My dad believed that white sidewalls were good for him it should be good for everyone else as well.

Temps here are on the rise we had several hours above freezing

DSC_0283.jpg
This was taken during our housewarming party/30th wedding anniversary last summer. Experimenting with uploading pictures

[Howie]

I would Vicky, but this bad back is giving me a fit today.....BUT I AIN'T SCARED!

[SalpalSally]

Good job Gary!! More pics please.

Try not to overdo, when you are going thru a flare!!

[Bou]

Cherie, you sound a little like me about things. Even though MS has had a profound impact on me (the biggest one being that my right arm and hand are in permanent contracture now) , by and large I have learned to live with it. And I take no meds now. That may change, but it's been probably four years since I quit. Just not a lot to do for SPMS, so I keep busy with work and hobbies and service to others. The typing is all left-handed now, and my eyes have a gard enough time reading all day for work, so my posts to any types of online groups are about nil. But I do plan to hang around awhile, now that I'm here, and sorta catch up. I will be forever grateful to Brain Talk in its heyday. It has worlds to do with why I have faced MS as I have for more than ten years now. Good luck, Cherie, with readjusting to the Rebif, and good thoughts to your dad. <3 Bou

[Gary]

Greetings from mud central!!

It has been above freezing for the last 2 days (like 40deg high temp) and we had over 2 feet of snow and it is melting the ground was frozen from sub zero temps so........ cats and dog have a pet door so muddy paw prints everywhere! It looks like April but I know winter isnt finished with us yet!

I have been puttering in my new wood shop. I separated it from the metal shop and I installed heat and A/C (wimpy I know) all thanks to Craigslist. I have amassed thousands of dollars of tools over the years so I try to putter for a couple of hours a day. My BIL likes to say that you can feel the testosterone just walking up to the building. I just acquired a kiln and a potters wheel as my wife and daughter want to use another shop that I built. Actually I divided up a machine shed that was 125' X 40' deep years ago and had a commercial kitchen and our cheese plant in it. I cant do anything more than a couple of hours but I like it.

My doc came out to the house, not for a house call, he wanted to borrow my 200 gallon tractor mounted sprayer and he was jealous but he thought that a project was a good idea but he did say that he would be mad if he saw me in the office due to over doing it. Sine he and my daughter both work for the same company I don't get away with anything. DSC_0015.jpgDSC_0003.jpg100_5484.jpgDSC_0010.jpg

[SalpalSally]

Thanks for the pics Gary. Very nice!!

[Cherie]

Bou,
Nice seeing you again and thanks for the "catch up post".

Joan,
Agree totally!

Gary,
Thanks for the pics. We have lost most of our snow and its been in the 40s today so we are in mud season. 50s and rain forecast for tomorrow.

Howie,
I really am glad you're back but I don't want to fight.

Between what I got done last weekend in NH and what I got done over the weekend, I am almost half done with getting stuff ready to go to the accountant on February 28th. My office is better organized and I shredded 2006-2008 tax receipts yesterday (could hardly get all of it in a 30 gallon flex garbage bag).

Sleeping is a real problem lately. I have been on Ambien for so many years (1999) that I am starting to have blackouts. It got so bad one night last week (I have snippets of memory from it) that David threw out all the alcohol in the house. He thought I was drinking and hiding it from him even though he had not seen it or smelled it and I was so "drunk" and "senseless" around 2 am one morning for more than 2 hours, he just freaked and didn't know what else to do. When I finally got him to talk about it, I found out that my lost periods of time (often from dinner time till after breakfast the next day) have been witnessed by him for weeks now as me being under the influence. I have brought this dependence on Ambien up to my doc several times over the years and have tried Trazadone and Lunesta but they did not work. So now I'm cutting the tabs in half and adding Tylenol PM and taking meds earlier so I sleep longer the past three nights. I HAVE to get this under control!

The Rebif nurse is coming in the morning for her second visit (nearly 3 months now on med) and I am doing better with side effects than even a week ago. I just do not feel well right now and cannot fully put my finger on why or what is causing it. It has been brewing for months (which is one of the reasons I went back on meds after a couple years on nothing for the MS). Went off LDN for 2 weeks because I was talking in my sleep but sleep worsened so restarted it two weeks ago. No real improvement in anything. I know Jeanie and Sally are on it but anyone have any input as to whether you saw no improvement or change and still continued on the drug? Pulling my hair out here. Both pharmacist and Neuro say the two (Rebif and LDN) can be taken together with no problem.

If anyone has any real thoughts on this, I welcome them.

[Virginia]

Cherie, sorry to hear about the sleep problems. I can well relate to not being able to sleep. I have been on Ambien since 2003, and so I have been hooked for some time. It doesn't keep me asleep as long as it use to do, but it beats not getting any sleep. If I have been doing anything weird I am not aware of it. I live alone, so no one to tell me, however I think I would see signs of it or something out of place. I have also talked to my Neuro about being on it for such a lengthy period and he said if I tried to get off I could expect to not sleep for 3 weeks. I just could not take it. Like you, in the past, I have tried cutting the pills in half, but have always gone back to the whole pill. It is a real problem that I have been unable to solve.

As you know, I have been on Rebif since a couple of months after it was introduced in the U.S. I called a pharmacy many years ago regarding LDN and I am unable to remember where it was. I do remember it being out of State for me and I got the name here on this forum. The man who mixed the LDN said I could not take it with an interferon, so you have two different opinions on this. He dispenses the LDN and he was very definite. He told me I could take it with Copaxone, but not the interferons. Your pharmacist and Neuro should know what they are talking about, but then again so should this man that I talked to.

I hope you start to feel better soon. Maybe working in addition to everything else (including the concerns and worry you have regarding family members) is a little too much.

Gary, really enjoyed the pictures. Love the front of your new house. Hope you are now feeling very much at home in it.

Bou, spoke to you on the other thread, but welcome to our chit-chat. Those of us here love it.

Ann, I assume you are at home with Pizza Guy by now. Hope you are well.

Sally, Jeanie, Howie, Gabriella, Agate and all the rest of you - hope you are all doing well. Gabriella, when you feel like it let us know what is going on with you.

[agate]

Cherie, it sounds good that you and David were able to air the issue and find out where each of you stood. Those blackouts sound scary. Medicines we take can have some very weird side effects as we all know.

Virginia and Cherie, I remember noticing Skip's Pharmacy in Boca Raton, FL, mentioned often as a source for LDN. The Website looks as if it's still active. Sally?

Gary, those photos are great! The new house looks just right--hope you and your near and dear ones will have many happy years in it.

In about 60 days I should have the long-awaited new wheelchair, necessary because there are no longer parts available for this chair I have, and its wheels need replacing. This is probably the chair I'm getting though mine is going to have a headrest too (helps with dizziness). And it has snap-on wheels!

Only registered and activated users can see links., Click Here To Register...

[Jeanie Z]

:) Hi everyone. Cherie I have been on 4.5 mg of LDN going on 14 years. I did not have any improvements but I quit having ANY new symptoms and that is big for me. I had new ones every few months before LDN.

I will keep taking it no matter what. LDN can be taken with the interferons too because that warning applies to the regular addiction dose of naltrexone about 200 mg or more a day. 3 or 4.5 mg will possibly affect the interferon a little but I feel it is worth it to stick with the LDN. I took it with Betaseron and with Avonex years ago.

I take Temazepam 30 mg caps for sleep. I also take 20 mg of Melatonin each night.

Virginia I am glad you checked in. Gary thanks for the photos. Take care everyone. Jeanie :)

[renee]

I am waiting for our governor, aka the man who would be king, to get on the medicinal mj wagon.
He's talking MJ for diabetes- news to me.

i want to sleep and i don't want pills, just a warm oatmeal raisin cookie with herb @ bedtime.
My sides cramp up magnificently 1 out of 3 nights.

Is it too much to ask for something that knocks you out in a flash feeling refreshed in the a.m.?

It will happen.
I survived New Years holiday…-2 to -16 f in Minneapolis, I will live to get my cookies.

-Nanook,
of the almost Adirondacks.