HAWMC -Day 12 Stream of Consciousness

HAWMC Day 12

Stream of Consciousness Day. Start with the sentence “______”just write, don’t stop, don’t edit Post!
So we challenge you, start with this phrase: “Today I looked in the mirror and…”  

 This turned out to be a very powerful exercise for me. 

I have never actually shared on-line what happened to me to cause my heath crisis, or for that matter what my heath issues are. I use phrases like "when I got sick".

I also have never publicly discussed my serious weight issues. I guess all it takes is 30 days of writing challenges to get me to open up and someone to tell me to just let it flow and don't edit. If I had stopped to edit you would never be reading my story.


Today I looked in the mirror…. and I can't believe I am really sharing this but.. I am looking a lot better than I did before I got sick almost 4 years ago. I was extremely overweight .. oh heck …yes .. morbidly obese, Biggest Looser big.  I tried not to look in the mirror back then.

I developed a critical series of heath issues at the age of 50. Eventually it was shown that my weight probably had very little to do with my illnesses, however one look at me led the health care professionals to jump to wrong conclusions and diagnosis and treatment went horribly wrong.  Yes, my weight put me in grave danger, but mainly because of prejudices based on my appearance, and my own embarrassment and reluctance to stand up for myself. 

 I almost died of a pulmonary embolism and the cause of the blood clots in my lungs was most likely related to a massive undiagnosed uterine tumour. The blood thinners to treat the lung clots caused the tumour to haemorrhage. My blood pressure was dropping and the treatment they chose was to give me medications that rapidly elevated my blood pressure resulting in a stroke according to the MRI results, As well  many, many tiny areas of damage occurred  in my brain because of oxygen deprivation due to extremely low blood volume. Several blood transfusions later I was stabilized, but so much damage was already done.  I was then declared unfit for any form of surgery and it was more than a year of agressive treatment for the tumour before it began to shrink and I was reassured that I would indeed survive.

 I found myself facing a lot of weight related problems while in the hospital. Larger blood pressure cuffs were not available. I needed the MRI and they withheld testing me for a while because they thought I might not be an appropriate size for their equipment. I was subjected to a humiliating set of measurements and it turned out I was not even close to the kind of numbers that would have been an issue and they should never have delayed testing. One nurse said that she didn't have time to go looking for an extra large hospital gown so they left me with only a blanket to cover myself. They kept testing me for disorders common to obese people and did not listen to me as I described my symptoms as acute changes and not chronic conditions.

I am still so angry at some of the medical professionals that dealt with me. I am angry with a heath care system that is not prepared to deal with larger people. Mainly I am still angry at myself for getting so overweight in the first place, and even more disgusted with myself for not being a better advocate for myself.

 I have spent most of the the past 4 years with impaired balance. I am dizzy and nauseated. Guess what?  All that nausea and vomiting and some of the serious medication side effects caused me to loose weight. I was still pretty heavy, but nothing compared to before. Person after person who saw me  told me how I had never looked so good. I had trouble talking, reading and making decisions. I was using a walker. The left side of my face was hanging and my left arm and leg were not functioning properly -- but yes, my weight was down so I looked just great to everyone.

My weight is currently up from that low weight.  I am back to leading a life of monitoring what goes in my mouth and chastising myself for consuming chocolate Easter Eggs when I am  upset. I still have issues as an emotional overeater, but now I know that I have the will and strength to overcome great difficulties.

When I look in the mirror now…  yes I see a thiner woman... but mainly I see a strong brave woman.

Meeting Up WIth Dean

Dean from Deans' Stroke Musings and I met in person last week. He was up  in Manitoba for the Winnipeg Folk Festival and we arranged to actually get together. On Thursday, Dean came to The Stroke Recovery Association of Manitoba to meet up with me and our local  group. I think he had quite the tour of Winnipeg before finding our office. I was really happy to introduce Dean to a few of my friends. He walked into the office and our staff person called out "Linda .. there is someone here to see you!" and I got so excited! We immediately had lots to talk about. It is funny to feel like you know someone when you have never met or even heard their voice before!

We decided to have breakfast on Friday and to continue our conversation. I was going to be back at Stroke Recovery early Friday morning for adapted Tai ji so we just met down the street from there at a nice breakfast place. We had a VERY long brunch but time really seemed to fly. A little longer and I think that between us we would have solved all the problems of stroke research and rehab today. We talked about blogging, camping, music and how to fit me for a kayak.

Dean, it was such a treat to meet you and have the chance to get to know each other!  Only 12 more months until the next Folk Festival!

Movie Day at the Stroke Recovery Association

We decided to have a Movie Day at SAM (Stroke Association of Manitoba) 

The decision was made to try having a movie event in the afternoon because so many of our members are free during the day. On the other hand many family members would not be able to attend at that time but we have to start somewhere. The movie Date Night was chosen because it seemed funny and like it might have an appeal to people who like an action show as well as people who enjoy romantic comedy.

We made some posters to put up around SAM, made popcorn, picked up some pop and rented the movie. Amongst other things, we learned that microwave popcorn is hard to make in an older microwave you are not used to. Next time I think would buy pre-popped popcorn and just relax at the event instead of worrying about how long to cook popcorn.

Our biggest challenge was that we had a large wall mount TV purchased recently and it was not yet installed on the wall. We went back and forth about getting a date to install it and we really appreciated Peter getting in installed on the wall for us.  The TV looks good and it we thing we will be getting more use of it with time. We don't have cable into the space so we can't actually watch TV, but we have lots of DVDs and videos.   We are hoping to get cable some time in the future. A few of us can picture the fun of Grey Cup and Super Bowl and a few of us would like together to see the Oscars and other broadcasts as a group. There is a fair bit of interest is watching curling too.

We didn't have a huge group attending our first Movie Day but everyone who did attend seemed to have a really good time. We are thinking this would make a good seasonal event and plan on doing it again perhaps in the Fall.

Bowling is Fun!

Stroke Recovery Association of Manitoba goes Bowling

Our little planning group at SAM realized that some of our members were interested in having a bowling event.  I don't think we had a very clear idea of what all a bowling afternoon for stroke survivors would entail but we jumped on in and started planning. I called the alleys and found and booked an accessible bowling alley and I made name tags. April and her husband arranged for prizes and a few giveaways,  and Dave and Murray worked out the teams and advertising. Sherry called the bowling alley and got them to donate soft-drinks for our event. Dave also did a bit of video recording of the event.  The price for our event was very reasonable too because we were bowling in the off time between 4 and 6 pm.

We had a total of 19 people attend this past Monday, and everyone seemed to have a good time. We arranged for the bowling alley gutters to be filled with a rubber bumper so there were no gutter balls for us. The alley has a wheelchair ramp and they have a metal gadgets that lets you release and roll the ball down the bowling lane from a chair. We grouped into teams and then we played bingo bowling teams. The objective is to fill a bingo card.. throw 2's 3's 5's and spare and strike. Because we were playing as a team and not looking for a high score there was very little stress and lots of fun and "team spirit". 

There were a few problems for sure and we will be talking about it in the next few weeks.  One thing we found out was that as a group of stroke people we don't have a lot of endurance and we should plan for shorter events when they are active like this. Part way through the event a kids party started on the other side of the room, and the lights were dimmed and we found that we were now playing "glow bowling". In a way it was fun to see us and our shoe laces glowing.. but it made it a bit more difficult for a few people with vision problems. The disco ball and some moving lights also pretty much did in me and one other lady. I had an almost instant headache and started having trouble staying upright.  So now I know that .. bingo bowling is a ton of fun and absolutely no glow bowling for me!

There was a trophy at SAM from a decade ago that was just collecting dust. We are going to have the "team name" of the winning team engraved on a little plaque and we will award it officially to the team members at the upcoming Annual General Meeting.

I think one of the nicest things to come of this event was that several people said they didn't know that bowling was an option for them anymore.  They are now confident that this was a form of recreation they can enjoy with friends and family in the near future.

Valentine's Tea and Baking Cookies

Yesterday was the annual "Valentines Tea" at my local Stroke Recovery Association. I was so excited about it. I was into making goodies for the bake sale, I donated materials for the silent auction, I took a turn selling tickets for an upcoming ticket draw for some really nice jewelery. I worked hard on convincing my stroke affected friends and their families that they should come. The tea was a great success and we had a lot of fun. The weather was mild, at least for here, and we had a really good turnout.

The thing that mattered the most to me was the fact that the girls from the Girl Guides of Canada groups I am associated came to help serve tea and the sandwiches and dainties. We had 2 young adults and 7 girls between the ages of 12 and 16 volunteered to help and they were absolutely awesome! I was so very proud of them.

It was kind of strange to combine the two charities that I am involved with but the girls felt great about helping and the people attending the tea commented over and over what wonderful hard working girls were serving the tea.

The treats I made were a success too. Baking is one of the things I have struggled with and I really have had to work hard on getting my skills back. Baking involves measuring and using numbers, it involves remembering what you have already added and it requires remembering that you put it in the oven and not letting it burn to a smokey crisp.

I have made "peanut blossom" cookie several times and I am starting to get a routine worked out at least for this kind of cookie.

I saw the link for these cookies with a heart shaped chocolate instead of a Hershey Kiss and I though that was perfect for a Valentine's Day tea. I will confess the first batch was left in the oven long enough that they weren't fit to use, but the second day I got more chocolates, tried again and didn't leave the kitchen for the 10 minutes they need to bake.

The cookie recipe and the picture above is from eighteen25.blogspot.com.
I love their blog-- it makes me feel like cooking and crafting.

On Bubbles and Forcefields

I saw a link to this video on the American Stroke Association's latest online Magazine edition; Stroke Connection December 2010.

What a wonderful view this lady has! She is a survivor and she is not taking it for granted!

On Bubbles and Forcefields