Today at Walgreens the young cashier commented on my WalkMS sweatshirt. I asked if she has done a Walk and she said yes. I told her I have MS, and "thank you for walking". She said she has it too. She sounding hesitant, like maybe she's newly diagnosed or new to announcing it.

It felt really weird being on that end of that conversation. She "looked good", as in she was working and I saw no symptoms. But I wasn't about to say that. I said some fumbly thing like "Ah, well", and smiled and nodded.

Sheesh...if you can't tell someone they look good because it might be offensive... What do you say?

Spent a couple of hours this afternoon trying to find the things I needed to make my DIY project for the ornaments I want to put in the womens stockings. I think I started a wee bit to late. I wanted to go inexpensive for this project. I wanted to get jingle bells that did jingle so I found those at Michaels and got the ribbon there but that left me to find the cookie cutters. never knew it would be an almost impossible task. I thought dollar stores would have some kind of cookie cutters but every one I went to said they were out of them. Of course you can't find any one to help you in any store. I think all of them are at the registers now.

So we went to Walmart. By this time I knew you had to look in crafts, house wares and seasonal. Well Walmart is a big store. I found some right off in kitchen wares but of course they have that bar code and you have no idea what the price is. A price above the display said $4.99. No way! I got one of them to check on the price. I know Target has bar code scanners all over so as I was walking to the food section to where they sell cake and cookie mixes I kept looking for scanners. I bet some one watching the hidden cameras thought I was a bad person who kept looking over my shoulder or looking suspicious for some reason. But no scanners, and no cookie cutters in the baking goods aisle. So all the way back to the other side of the mega store to seasonal, no cookie cutters but there was a cashier that had no line!!!! She scanned it and the thing that was in an area that said $4.99 was actually $.97!!!!!! I felt like hugging her. so went back and got 12 cookie cutters. I was wanting snowmen, angels, trees, etc in traditional red and green but all I could get was stars, snowmen and trees in a funny color of red and green. But that's OK, I got them.

So sat here tonight thinking this would be easy. I can't figure out how to lock the ribbon through the little thing on the bell, loop it around the top of the tree and then make it all stable so the bell doesn't move except jingle. I can't get the bell stableized. It kills me to do it because I didn't want my sister to see them. One of them would be a gift for her! But I am going over there tomorrow to finish another DIY project and I will have her help me. She and Mom were the creative ones. They had a solution for everything.

Sparky you could have said something like welcome to my world or something maybe like how is your treatment going. Glad she at least picked up on your shirt and spoke to you about it.

Sally, feel like your mouse sometimes. I still have three gifts left to buy, candy to get, some other stocking gifts, a birthday present for my brother in law who's birthday was Dec 19th and wrap everything!!! But our holiday is on Jan 3rd so I don't feel as behind. But then there is the dirty house thing plus the tension of knowing that 33 people will be here, 4 of them toddlers and 2 newborns.

My two little granddaughters!! Emma is in the red and Evelyn is in the gray.

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Kitty, those 2 are just precious. What a wonderful Christmas present!!!

MeRrY ChRiStMaS. Wish I was There..

We had a very simple dinner today with the family that lives here in town. Ham sandwiches, potato salad and brownies. But we had fun together. I guess what made it fun was that my brother in law stayed in the living room and sister, my daughter and I kept the conversation such that my husband really couldn't ruin our day!!! Those two are so much alike that they clash when they are together. One claims to be super religious but can be a total pain the butt, selfish, boorish and loves football. My husband hates football, says it promotes violence but yet he wants to shoot, or more violently torture anyone who doesn't think like he does. so they don't mix.

I’ve been MIA while getting things back on track after yet another stroke in the summer. It hit the thalamus which caused vision problems (double) because of paralysis in one of the muscles and threw in some added sleep problems along with basic brain function impairments. Things are getting better but it has been a slow process adapting to the changes.

Prism glasses have helped with the vision and therapies are helping with getting balance, cognition and memory back. I use WORD documents to write things on the computer now because I’m slow to get thoughts into written form, make tons of typing mistakes and need to edit a lot so things make sense. I also need take frequent breaks from the screen because dizziness sets in after a few minutes of working with text. It has taken 20 minutes and 3 breaks to get this far.

Being aware that the memory and cognitive functions have been affected is off putting but the doc said that being aware of it is actually a good sign for potential recovery. More recent memory and recall remains difficult, especially if I’m put on the spot and some of what I knew seems to be gone for good.

Mostly these things come to the fore when others are discussing things that seem to be common knowledge and I realize that I have no retained information about. I caught myself saying things that judging by the expression on others’ faces, was an inappropriate response. That awareness and physical limitations have made me opt to be reclusive until things get better.

In the event that they don’t, or more so in the event that they get worse, with the help of a lawyer, I put into place an advanced directive. It spells out to my family, POA and doctor what my wishes are if/when I can’t speak for myself. Doing that took a lot of stress off because I really don’t want to go through what others might think is best; as I have had that experience.

It took a lot of doing to get off of the drugs that I was put on and to deal with the effects of being fed foods that my system doesn’t tolerate. Those two things are big issues for me and have now been dealt with and into the future with the Advanced Directive.

Know that I think of you all often and miss keeping up with the goings on here but there are huge gaps in memory that make it hard to remember and keep track of who’s been doing what from day to day.
It has been like that in my home life too and so other than keeping in touch with one friend and family, I keep away from situations where I might run into, or need to talk to people who knew me before this happened. It is easier than to try to answer some of the basic social questions, never mind ones that are more specific.
My speech and thought process is slower now but I’m working on it.

My dog and cat are great companions and house mates. They don’t require explanations or conversation and yet, they seem to understand what is going on at any given moment. The dog is never far from my side and has taken to laying by my feet where ever I happen to plant myself. The cat is my bed mate and hangs out on the windowsill by the computer most times when I’m on it. Having them near is comforting.

Hoping that all of you are doing well and I’m looking forward to rejoining you on a more regular basis soon.

With love, Erika

God Bless You Erika.

Well Erika you answered one question without ever me asking it. So how much you have improved. You anticipated my question!!!! I wanted to make sure your dog and cat are still with you. Yes, they are the best companions, they can anticipate needs, problems and give you the care and love you need. they sense your mood and give you what you need. So sorry you have had to go through this though. You are such a strong, giving, unselfish woman. Know that you are thought of often and we welcome any quick hi we can get.

Thank you for your support everyone.
Yes, the fur babies are a God send.

The stuff that the stroke did makes the MS symptoms more difficult to work with but at least all of that joint stuff that I had going on settled down. Still have the regular spasm, pain, weakness, fatigue and numbness though. Severe headaches are new along with an increase in vision problems, dizziness and cognition/memory deficits.

Mostly, the memory thing is the hardest thing to work with. I get stuck on figuring out anything with the numbers 7, 8 & 12. Just draw a blank, so have been re-memorizing those parts of the multiplication table…but it doesn’t stay very well. Every morning I go over those numbers but retaining new information, recalling recent memories in some areas, like numbers and names/nouns has a glitch in it.

On the other hand, stuff that is well ingrained, I remember very well although sometimes have trouble expressing it verbally – slow to find the right words. Writing is easier because I can see the words, but then dizziness comes after a few minutes of writing or reading.

Getting around the mental glitches is much like trying to phone the phone company on a dysfunctional phone, to get the dysfunctional phone fixed. Sense of humor is intact .

With love, Erika