Blessings

     Today we go to see Dr. Grimes or He Who Shall Not Be Named. He is the movement specialist but there is a lack of movement in this body. He is the one who diagnosed the MSA just two short years ago. I am not looking forward to it because he is going to ask about my falls and I am going to have to tell him about the fall against the window and the fall I had yesterday. I was being so careful and sat on the couch closest to the armrest so I would have it as support when getting up. When it came time to get up my legs deceived me and gave up. I fell into the end table then continued forward and tried to grab the ottoman and pushed it into the chair while falling into the patio door. I thought the stain glass lamp was going to fall on my head. Thankfully it just rocked back and forth and did not fall on my head. Again no cuts or a broken bone just bruises.  As telling this to Dr. Grimes he said what I thought he would say, I must use my walker at all times now because there is no warning with MSA you just fall.  To think when I just want to get up and go get something or move there is no doing this, even if I want a coffee I cannot get a coffee and push my walker. Another freedom gone!

     It is amazing the things we take for granted until they are gone. I cannot tell you how many times I have been sitting and thought will just get up and grab that. But there is no more just doing anything any more. My three point turns are now fifteen point turns. When moving to the left I seem to have more trouble. So there is no thinking what is fastest when turning I have to go to the right.

    
      On a brighter note two of my friends are coming for a visit. Turns out that my friend from Alaska has a woman cousin who is married to my other friend’s husband’s cousin. It is such a small world in some regards.  When these friends came over we planned a lunch of finger foods. I have been friends with each of these ladies and it was going to feel god bringing them together. We had a nice lunch, lots of laughs and a great visit.

     

     My daughter’s mother-in-law was on a cruise on the Queen Mary 2. A  luxury liner which is fastest in the world. When she got back she wanted to visit as well. She came one evening and we talked about her trip. 






     In the course of her conversation she mentioned how important it was to get a Madonna medal and have it blessed for me at the 
Notre Dame Cathedral in France, one of the best known churches in the world. This meant so much to me not only because it was the Madonna but she is of a different religion but realized how much this means to me.

     A person has to remember all these good intentions; support and prayers are not going unnoticed, and that blessings come in many forms!

The Mommy Sitters

     Today is a big day for our boy; he is going to look for his first home. I was so very happy we were in a position to experience this event. Even though they wanted me to go I knew it would be better if I waited at the condo. The MSA, which was causing many balance issues and walking issues, would just slow them down.  I knew they would accomplish much more if I wasn’t there. With the progression of the MSA I knew it made more sense for me to stay home.

     My Fille and her husband were coming to Mommy-sit me today. My Hunny and Boy left for Kingston. Hunny did the clean up before he left but didn’t have time to make the bed and said he would do it when he got back but I wanted the bed made before my daughter arrived. I proceeded to make the bed, when I went to make Hunny’s side of the bed I really noticed how the MSA was affecting my balance. I fell, not like a sack potatoes but like more like a tree, “timber”. Down I went sideways into the nine-foot window. The glass supported me thankfully but when I fell I landed on the sill, which was made of marble. I just laid there I could not get up because my legs can no longer push me up. I thought so much for this Lifeline because it did not go off. I just finished thinking this when I heard,“ your Lifeline call is in progress”. I thought oh shoot, how I am going to get up, because the first person of contact is Hunny, I did not want him to get a call and be all panicked thinking I was hurt. I managed to drag myself to the bed like a paraplegic, because my legs were useless. I got up using the bed to push myself, so when the call went through I was able to answer, but when the call went through the person at the other end had said about five times that they detected a fall. I reassured him that he was right, I had fallen but I was okay.

     My daughter and her husband arrived to Mommy-sit me. I told her what happened so she checked the bruise and my backside was black and blue and had a big lump in it.  I did not want to ruin the day my daughter and her husband, so I down played my injury, the main thing was nothing was broke or cut. Maybe I was like a cat with 9 lives, the windows were 9 feet high and they did not break and I did not break anything. I put ice on it and took ibuprofen, this helped a lot.

        We went to the farmers market at the college, I was using my walker, and it folds like an accordion so we were able to stick it in the back of the car. We were walking around looking at the artists when I felt like I was going to pass out. The thing is with MSA it can affect your sweat glands. I do not really sweat and tend to over heat; this is what was happening so we came home.

      Once we were home I felt better. The Mommy-sitters played scrabble with me, and watched a movie, Red Riding Hood. We had a fun time; I think we will get these Mommy-sitters again. 

     Hunny and our son returned and they had looked at probably 18 houses. Our son had seen a potential house, which was very exciting. 

      

     To me, this is what makes a successful family, is everyone doing their part no matter how big or small, everyone chips in to reach a common goal.

A Father to Celebrate

     It was Father’s Day and I wanted it to be a special day not only because it was Father’s day but because I had chosen a great guy to be the father of my kids, instead of just of one day dedicated to him I wanted the weekend.

    Not only has he been a fantastic Dad over the years but he has been the kid’s and my hero. We have had many postings over the years and lived many places, but no matter where we lived or what job their dad had, they could always rely on his honesty, integrity, dependably and fairness. Over the years the kids and I could always count on their dad to do the right thing.  This love has been our glue!

      I was worried when diagnosed with MSA about ending up alone, not by anything Hunny said or did but because MSA is referred to a lonely disease and I know why.  When diagnosed with MSA it is not only changes the person diagnosed but loved ones as well. I think even though we may not like the answer it is important to ask the hard questions and do not assume. I do not want us to be together because it is the right thing to do; I wanted us to be together because even though I was sick with MSA we want to be together. When I asked this question Hunny reminded me of something I must remember, “Look at you through my eyes”. This is hard for me.

     I think it is good for the kids to know and see how we treat someone we love when they are sick. So I tell them how their father does manicures, pedicures, dyes, combs my hair, and helps me get in and out of chairs. Hunny is always there no matter what I need, this is good for his children to see.

    The kids came over and we had Mexican for dinner. I told Hunny he had to get a hobby besides me, so I got him a guitar for Father’s Day. Jessica got her dad a cup that said, “I am your father”, we got a charge out of this. The kids got guitar trinkets and a bottle of his favorite scotch for their dad he was pleasantly surprised. After dinner we played a game and had some family time. 

     The next day we went for a long walk. I should say Hunny pushed me in my chair (Rollin) along the way we stopped to have a coffee at Starbuck’s, when we got back we split a beer on the patio. That night we watched a movie Journey to Mysterious Island.

 We had a great weekend and lots of the things I cherish, family time and Hunny time.

Family Picture

       I wanted to get a family portrait done not only to have a memory of time but also I wanted a current picture of my pride and joy....My Family. For Christmas last year I was given a gift certificate to have this done. I wanted to wait until there was greenery and life, so we waited until June.

     My Hunny and I would walk along the river often, at this time I was walking at least two kilometers with my walker. My friend would come over and we would go for a walk along the river. I could not be trusted to go out by myself anymore. To get out of our apartment I have to bring my walker as close to the door as possible, open the door and get between the door and my walker, then I have to inch my walker and myself sideways while pressing my back against the door and holding the door frame I get out.  To go to the gym or the mail, this is what I do. Needless to say if Hunny does not get a chance or my friend to take me out I do not go far. Not only do not I not go outside alone I cannot even go on the patio alone, or open a window because just cranking this will be enough to throw my balance off.  This is how MSA can affect your balance.   

     My daughter had arranged the photographer who  took her pictures, Love Bunny Photography to come do our family portrait. We decided to go on Bates Island. This is near the river where we go walking often and we can take some of the condo in the background.  We had lots of shots taken, some with Hunny and me, me and my kids and some family shots. I was so very happy with the way Christine took the pictures she was able to capture on camera the happiness we feel as a family.

     For the family picture I had lots of help so I was able to use my walker. We took a family picture of us all walking together. It looks like I am walking by myself because I have my arms linked threw my sons and husbands. There is also a family shot where Hunny and I are sitting on a rock, before the MSA hit. This might not seem like a big deal but to me it is. My legs cannot push my body up any longer, so it is hard to believe and think this will probably be the last time I will be sitting anywhere by myself. One of the symptoms I have due to MSA is my legs have a problem supporting me.

     After Love Bunny Photography took our photos we took the kids for brunch. We went to Rockn' Johnny’s for a lunch. We just finished ordering and sat down to eat and I took my first bite when I started having swallowing issues. I started coughing which caused a spasm in my throat and the esophagus gets tired and does not work the way it should. I was having breathing issues and I could feel the blackness all around me like I was going to pass out. It is like I have a Charlie horse at the back my throat and I have to remember that I can breathe through my nose. Usually Hunny helps me relax and to breathe but this is hard to do, when you’re not getting air. Luckily I did not have to go hospital but that put an end to me wanting to go to the restaurant or eating out in public  just in case I choke. I did not want to ruin the moment so acted like it did not bother me. I did not eat anything else while I sat while everyone finished their meal but you can be sure this made me think how long before MSA would take swallowing all together. Until then as a family we would have meals together.

As I have read we start and end with family!

 

Time....

     It has been a year already for my daughter and her husband to be married. The time sure has passed quickly. Happy Anniversary to them.  I was recounting this story of when my kids were young.  It was one of those times; we were posted to North Bay. We were waiting for our military house and the kids from being in close quarters each day I would put them on timeout and each day but when saying my prayers I would ask for more patience.


The next day we were not up five minutes and they started arguing, so I said, “that is it’, and they said, “no Mommy we don’t want to go to our room’ and “I said, you don’t have to your room, I am going to mine”. To this day I love this story. It is hard to believe the years have passed so quickly including this past year; so much has taken place in a short amount of time. We have been very busy with the life events and learning new coping strategies for helping me deal with the MSA. We have to remind ourselves that sometimes we need to remove ourselves from the situations.

      My balance has been getting much worse this past year. I was in the bathroom and needed something under the sink, l have trouble when leaning in or over something.  So needless to say I fell, face first into the cupboard door. Luckily I did not hurt myself when falling into the cupboard. I was crying not only because I was hurt but that I also ripped the door off the hinges. I had visions of our condo being a mess from me. Everything being marked up from my walker or cupboard doors off from me and this dreaded disease called MSA .  Hunny, always says it is only screws and paint but this does not make feel better.

     One of the symptoms of MSA is difficulty with my bladder. I keep having kidney infections and flank pain and instead my temperature going up it drops. After a few days of this I went to the doctors to get antibiotics to clear up my 7^th infection.  Another one of these and I would have to do something more serious. I not only have trouble with frequency and urgency but the emptying the bladder is an issue also. Now by the time I get out of bed and to the bathroom and sit there and wait, then get back to bed I am awake. So my day starts very early.

   I still try to go to the gym and I try not to get discouraged. To think I started running at 5.2 MPH then slowly it turned to walking down (not up) to 2.5 MPH. I eventually moved to the elliptical because I would not have to move my feet, but this became hard to climb up on the elliptical so I moved to the recumbent bike. I have been using this for a few months but notice when I am pushing the leg making the revolution has tremors. Needless to say I don’t go to the gym now, but although I do not go down to gym I use tension bands. I stay as active as long as I can! As long as I have the support of my family I will persevere.

Matters of the Heart

    

      Today we got some alarming news; my husband’s mother who has been short if breathe when going for walks and shopping had made a doctors appointment and discovered she had a heart attack and had to go to the hospital and see the heart specialist. Thank goodness it was not a big one and she was not out somewhere and fell. Hunny took the Friday off of work, so we went to Quebec the Thursday evening. We went to the hospital Friday, Saturday and before we left on the Sunday.

    We went the next day to spend time with my mother-in-law and during rest time Friday we went and had lunch with Hunny’s sister and her husband. We went to Thai Express and surprisingly I liked it. We had Thai food for my birthday which I did not like much but this was good. We went back to the hospital for awhile then went to my mother-in-laws. The next day after breakfast and our showers we went back to the hospital. We spent the day with her.

     

    We left a Mother's Day gift and card for Hunny's mom. We get the same thing each year but it is treat for her.

When we arrived my daughter dropped by with a card and and beautiful tulips for Mother's Day. New life!!

     My mother-in-law just wanted it to over, but she realized how short of breath she was and everything was becoming such an effort. We stayed at her house and I brought my walker to help me get around. I know it is hard for people to see me because I was so healthy and active before the MSA. The MSA was progressing fast and was getting it was harder for me to walk. It is hard for me to speak the French language as well. There are a lot of R’s, L’s and is very throaty all problem areas for me. But love is universal.

      I know people feel bad if they complain about their health issues to me, but I always think pain is pain and it should never be dismissed. Sure there is always someone who has it worse but thinking this does not make your pain go away.

     

      When she finally did see the Doctor and they ran some tests and discovered she had a couple of blocked veins.  The doctor said they were going to do a double by pass surgery on May 16^th.  They were taking the vein from her leg and replacing the ones that were blocked in the heart. I am sure the anticipation was driving her crazy, just to think they will do these two surgeries and that they actually have to stop the heart to replace these valves.

     We drove back this week to see her. All the family was there, they all took turns so my mother-in-law would not be alone. That is what family is suppose to do, be there for those tough times. I am sure it was hard to see their mom in this shape, she had always been so healthy and would be again it just takes time. Even when we are taking care of ourselves we never know what tomorrow may bring.

                    

     While Hunny’s mom was resting to went to St. Anne de Beaupre Basilica. We had gone here almost 27 years ago. One of the original workers who had scoliosis needed a crutch to aid him walking was healed upon completion of the church. There have been many such miracles performed here and people have left the crutches and canes as proof. I was hoping for such a miracle. A cure for this MSA and to walk! So Hunny took me to the Basilica and we light a candle and said a prayer for my mother-in-law that the surgery would go well and asked that a miracle be preformed for me and all the suffers of MSA.