[Mari]

I am sorry Kate that you are going through this.

Do what you can to self-soothe --- or if not soothing, then something else that helps you feel o.k. enough.




M

[OhKay]

Bobby, Close to 90% of people with MS have relapsing-remitting MS (RRMS). When people talk about "MS" that is almost always what they are referring to. I have progressive-relapsing MS (PRMS), which is rare (about 5%). I've also been diagnosed as primary progressive (PPMS, about 10% of people with MS). There is some dispute now as to whether or not PRMS and PPMS are separate diseases or not though. Almost all the research money goes into treating RRMS because it is the most common form of the disease, and the mainstream meds aren't effective in treating progressive disease. I tried for years though.

When I got my forearm crutches 2 years ago, I got youth cuffs because my arms are skinny and I didn't like the feeling of them rolling around. I went out with one yesterday and my arm was in a fixed position that does NOT work well with how I walk now. So, I went online and bought adult-sized cuffs when I got home. I was surprised they were only $18 each. I bought an open and a closed one and will see which one I prefer. I got an email saying they shipped yesterday. I will stick to the cane until they arrive. It's hard enough to walk right now as is.

I got my food shopping out of the way yesterday. I didn't bring in one bag, and my husband didn't call me to help with the door because he didn't want me to have to go out (that's something positive ).
I have to pick up a package that was signed for at the office while I was out, and make a quick trip to the pharmacy today, but then I won't have to go out for several days. I do a hell of a lot better navigating the apartment than I do the world outside, and it will be good for me to forget how bad my gait has gotten for a little while. I hope it will help me focus less on the MS issue in general.

I need to vacuum today, and I'd like to make cookies if I feel up to it. There are other things I can do to occupy my time, as today is a good day to distract myself, but not to the point where I exhaust myself.

As far as the anniversary goes, I am doing well. I am aware of it, but there is a big brick wall up. There are zero thoughts or emotions beyond that awareness right now. Denial is ****ing awesome!!!

[OhKay]

I took my time (almost 3 hours) and enjoyed making the cookies. They came out with a great taste and texture, so I was very pleased.

The Pats were slaughtering the Jets yesterday long before I decided to give in and take a nap. I felt bad because it was Christmas Eve, but I knew I would be making dinner later and need the rest.

Dinner came out well, but was late because of lack of coordination on my part again. We watched some Christmas movies I recorded including Rudolph, which is one of my personal favorites.

My husband is going over to his mother's house today, and will likely be over there for hours. I'm going to stay here with the kitties and watch more Christmas movies, maybe with a nap thrown in somewhere.

Right now I am SOOOOOO MAD at him…
It's not worth getting into, and I guess I don't have the patience to. All you really need to know is that it takes a hell of a lot to make me REALLY lose my temper, and I completely lost it. He was calm and mainly took it…. because he knows damn well he was wrong.

I guess I wasn't going to have much of a Christmas anyway.

[Mari]

Did your ham come out to your liking? Glad to hear that the cookies turned out well.

Really sorry to hear about your Christmas.
I hope that things got better.


M

[OhKay]

I bought a small, boneless, cut "brown sugar and spice" ham. It didn't come with a glaze packet, so I made my own glaze using brown sugar, honey, cloves, cinnamon, and allspice. It was very good.

Things were okay when my husband got home from his mother's. We ended up watching a couple of Christmas movies and turning in early.

The evening turned out much better than expected

[OhKay]

It would be nice to have someone to talk to about my recent MS relapse, but as usual, my husband doesn't want to hear it or see it because he's in denial. Part of him gets it, but I guess he just can't deal with it.

Trying to get up that walkway and navigate the stairs to get in and out of the apartment building is 100X worse now. I need him to acknowledge how hard it is for me because we need to save enough money to move, and that may mean he has to work more. I don't know if he's willing to do that though.

I think I'm going to open the subject up for discussion today. I don't even have an idea of how much money he wants to have before we do move, and I think that's a worthwhile question to ask.

[Mari]

I try that with my husband occassionally and rarely find success because he
would rather live with a certain degree of denial and I do not blame him.

Still, sometimes he needs to know the serious of the situation so he can
do /not do something.


=-=-
Lately I have been trying something different like this:
"Things with my situation are really serious, more serious than
we have discussed before, I need you to stay home today (or whatever it
is I need -- can't come up with better examples/situations right now).


He listens to my needs most of the time.

M

[OhKay]

Last night when I asked my husband how much money he wanted to have in savings before we move, he said he didn't know because he didn't have enough time to think about it. I was firm when I told him I NEED to move as soon as possible, and I NEED to know we're working towards that goal…

He did give me a number, and it's not unreasonable, but I don't know how long it will take us to get there. We were able to put some money away recently. I think we can maintain what we we have, but I don't know how much, or how quickly, we can build on that.

He mentioned buying vs. renting, but that's not realistic because we would be here FOREVER trying to save at least DOUBLE the amount of money that he wants to save now… I'll keep playing the lottery… and maybe we should go to the casino and hit the roulette tables… lol.


I have abandoned the e-cigarette and been smoking regular butts for over a week now. I don't plan on giving up though, so I guess I have a New Year's resolution on my hands…
I may have more reason to quit soon, as I'm having pulmonary function tests done January 4th because I probably have COPD.

[OhKay]

We were supposed to have a storm Wednesday night into Thursday, so I thought I was being smart getting my errands out of the way Wednesday, so I could stay in on Thursday, but the storm never happened. Instead we got a surprising amount of heavy wet snow Thursday night.

I was supposed to do the grocery shopping yesterday, but didn't feel up to dealing with the parking lot, and was really feeling like I needed a nap more than I needed groceries. But I had to go out to buy TP because we were out, so I went to Rite Aid to pick some up, and I went to the butcher shop because I knew it would be a circus today.

I have to do the food shopping this morning. I'm dreading it, but the sooner I go, the sooner it will be over with.

[OhKay]

Yesterday the grocery store was a packed, but I had good fortune, and was able to get a handicapped spot, and didn't have to wait in line to check out. It was a much better experience than I expected, especially since I waited until the last minute to go. No complaints
I won't carry any bags in anymore. Even if I wanted to, I can't because my left arm and hand, which is the free one, are somewhat lame since the relapse.

We didn't do anything special for New Year's Eve. Usually I make filet mignon, but I bought french bread for pizza yesterday, forgetting I had to use it before it went stale. My husband wasn't bothered by it. We watched a couple of movies, and were both asleep before midnight.

This morning I'm going to poach some chicken to use later in soup and chicken pie. If I'm feeling up to it, I'll throw the soup together. We'll have our steak dinner tonight.

The Patriots play today at 1pm. I don't have to worry about lunch, since we have leftover pizza from last night, so I won't have to miss any of the game