What a great day!! I was up shuffling twice today. My first walk/shuffle was to the tub room which is ten feet from my room. I thought this was good. I want to say this was the best part of my day, it wasn’t though. As a matter of fact the best part was when I came out of the tub room on the shower chair wrapped in a sheet. We rolled into the room and there sat my nephew Micheal in my wheelchair.. I had to ask him to go in the hall as I was naked, and needed time to dress. We finished drying me, put on my pj’s and let the man back in the room. I was so happy that he took some time out of his day to visit this old Aunty.. Not many twenty-four year olds take such time in picking cards as sweet as this.
My sweetest young man brought this perfect card
I’m so grateful to be loved so. He was up from the city last night as he had a job interview up by Mom and Dads.. Then on his way back to Calgary he blessed me with his presence and that thoughtful card. My sister raised a good boy into a wonderful man.. I’m honoured to have him.. We are all lucky to have him, we just about lost him many years ago. My Dad his Grandpa saved his life. My Dad is a hero in so many ways. I’m surrounded by so many great men. I was just going through chapter six of my book. After finishing it the love I feel for Kyle shines so brightly.. He reminds me of my father in so many ways. This is amazing to me to add one more hero to my stack.. Kyle, my Dad, and Micheal how blessed I am.. I kicked him out at noon to avoid this huge storm was coming.. As it turns out the storm is hitting everywhere around us except between him and us.. I would have kept him longer if I’d have known this then..
The rest of the day was made up of many more visitors. A couple I was expecting one was a pleasant surprise.. The pleasant surprise was my friend Jon.. He had to run into Trochu and was kind enough to pop in here to see if there was anything I needed from home while he was near.. My first request was for him to pop in and give the puppies some love.. He of course happily agreed.. It was wonderful that he went, I pushed my luck by asking if he would cut me up some salad.. He one more time agreed. What was so funny about that was that Kyle got home and there was Jon cutting up salad.. Apparently they both laughed and agreed how spoiled I am.. Yes I get this is true, like I said above I am blessed..
While all the above was happening I was here earning it all I guess is how I look at it.. One of my physiotherapists came by to see if I was up for my second walk/shuffle of my day.. This was a big one, I walked one hundred eighty feet. So my grand total for the day was one hundred and ninety feet. This is the most movement I’ve done in two maybe two and a half months.. I feel like I’m living the last months of my life before my transplant.. I’m back thinking of chapter six. In chapter six it’s a lot of the hellish build up or fall down to get there. Going over it fully finished is simply a replay of what I’m going through right now.. I’m an up sided gal, sometimes like today comparing then to know brings up some real fear for me and mine. As I write this to yo tonight there is no transplant at the end of this for me. Where does it lead when the answer has already been used up.. I’ve mentioned to Mike this morning that we’re going to have a family meeting so we can ALL be on the same page. I understand that none of this going to be easy on any of us. What I do know is that pretending that things are not happening is also a very bad idea.. Anyways this was meant to come of this. Of course this is not the end. I promised Alisha and Kyle that I would fight tooth and nail to continue until this book is done. I told my Mom that I would do all I can to hold off, I know that whatever happens this needs to be a real raw conversation with all those that have a stake in my future.. As things are right now we all deserve to have a say.. THIS is NOT ABOUT ME GIVING UP, THIS IS ABOUT MY SELF RESPECT!!
Love ann hugs Fiona:-)
Good day.. Actually great day.. This is dependent On many factors though.. It’s a great day for today, tomorrow, and the next day guaranteed, after that I don’t know.. This is what makes this so unpredictable.. With all of this happening again I am really asking for all of you to pray ONLY for Gods will. This is a request that is dear to my heart.. As I know better than most know how easy it is to be to selfish and pray for someone I love to get well. Laughingly the alternative if I don’t like the person. This is something I’ve never done, I do know people who have though.. I just somehow need to be peaceful in my heart.. I have no idea what Gods plan is for me, I do however need it to be in his or her hands.. I actually believe its nature. Being the selfish soul I am I take a few bits and pieces from everyone one I meet, from their spiritual paths.. All of this is what gives me the freedom to turn my will and LIFE over to the care of God AS I understand him.. I can only ask that you honour my request.
With having the above in mind my first dose gave me the ability to sit painfully at the edge of my bed. The reason I say painfully is because my trunk was still in partial paralysis.. With this my weight was resting heavily on my left hip. As my left side has always been weaker so when paralyzed it’s simply heavier.. The process of even getting me sitting up was with two physiotherapists and a belt. This process was also done very gingerly done, as all of it hurt like hell. Once sitting some shifting with assistance happened from hip to hip. Doing this helped immensely.. From this point they asked if I wanted to try to stand? I was excited, but nervous to see if my legs and my trunk could take it so soon after the first dose.. As it turns out I was able to stand twice. These did take everything I had and a lot of deep breathing. I did do it though..
I just laid in bed until two ten. I know this exact time because my little sweetie Quinn was here excitedly waiting for the nurses to show up. They were going to let him operate the lift remote. It’s a extremely simple arrow up arrow down procedure.. The first nurse arrived you could almost watch Quinn jumping out of his skin, and the excitement was just starting.. She rolled me one direction and put the sling under then rolled me to the other side and pulled the sling the rest of the way under me. It was at this point the controller was put in Quinn’s hand.. The other nurse came in and things progressed from there..Quinn pushed the down arrow while the nurses led the actual lift over my body.. They hooked the sling to the hooks, Quinn hit the up arrow.. Up, up, and away. The nurses led me over the chair. They got me into place, Quinn hit the down arrow. We did notice that he was quite a bit more apprehensive going down with me in the sling. I can’t be certain, but I do have a hunch. I think it’s because he was nervous that I may fall.. Everyone kept saying “go until they say stop,” he did this after a few more “it’s okay’s.” I was soon resting happily in the bodachair.. A bodachair is a style of chair the has higher sides than a normal wheelchair, and sits back as far back or as little is comfortable for me. It keeps me safe from slipping out or tipping out over the side.. It was Quinn that got me safely down into the chair. We had high fives all around, then Quinn and family had to go.. I sat in the chair until after supper. Kyle came for a visit, I had supper at five. Dr. J and Heather my Ocupational therapist both came for a visit we had good talks. They all went separate ways. This was not before I kept Dr. J to mention to him of my thoughts on my bad turn could be because of the prednisone being completely out of my system from being tapered. He actually agreed that my thought could possibly be right.. I did continually say that I’m not a doctor, but I have lived in here as “I pointed at myself” for a very long time.. He nodded his agreement..
The greatest part of this day was that it certainly was time to get back into bed as I can get more comfortable in here now that I’m able to move a bit.. I had to catch a nurse by calling as I couldn’t reach to push my call button. Looking back now I should have asked on of the ladies to have had the button over with me. Oh well as they say spilled milk.. They got in and were willing to listen to me, they trusted me. I had asked if they would let me walk to my bed? Over came a walker (walker with no wheels) i pulled myself right to the ridge of the chair. I sat the for a minute I guess waiting for my body to stable enough.. Finally feeling stable enough I pushed off with my arms. I also reached up to stabilize myself and pull on it to get up. For the third time today I was up.. This time I had to shuffle my feet to get to the edge of my bed to sit down.. I shuffled two steps toward the bed then another four shuffle steps along the front of the bed, I’m puttering a long in front of the bed. I get turned sat on the bed and the ladies swung my feet up on the bed. Its here I just lied and started to share this..
Here we go again
I’m a sleepy gal.. Oh welcome to two doses of the both..
Love and hugs Fiona:-)
Good day I wanted to start this way again because it has not been a terrific day, it has however been an okay day..
There is great news though, I woke up able to move my head. This was great because not being able to move my head is a very bad thing.. It was also hard to swallow. When I would swallow it was very thick, apparently this is dangerous.. I’m not certain what any of that meant, I just know the doctor knew what I meant. I also know everyone was very happy by last night when I could turn my head on my own.. Everyone who came in my room yesterday had to physically turn my head towards them so I could look at them.. I have made a 100% turn around when look at it that way..
I lie here now still paralyzed from my collarbone. The difference is that I can move my arms up to where my collarbone line goes across my body.. Even with this I’m feeling so much better than how I showed up here yesterday..
There is one thing more that makes me confused other than how this all happened in the first place.. It’s the fact that tomorrow morning they’re starting me on IV steroids again.. I was certain I said I wasn’t going to do this merry-go-round again, but here I am.. I know that if I’m not walking by tomorrow afternoon it will for certain be Wednesday.. I know how I react to steroids been playing this stupidity game a long time.. I thought I had made up my mind that I wasn’t doing it anymore, I also swore I’d never be in a hospital again, but here I sit. It’s amazing how fast my mind changes when I’m looking at the fact that my life is in the grips again.. I’m unclear how or why I was not able to say NO when asked if it was okay.. I needed to standup for my decision, I wasn’t able to do that this time, sadly there will be another chance. I’m guessing sooner or later I will finally have the ability.. I do know some will react sourly to this comment, I still need to write it. When I was unable to stick to my guns today I felt like I was a bit of a coward.. I felt like I let myself down. I know that I didn’t do what I had previously planned out, but neither did Dr. Pearson. She said there was nothing else for me, and that the last round was going to be the last. When Dr. G came to me with the thoughts from Dr. Pearson I was put on the spot when really the offer shouldn’t have been on the table at all.. As I write this I see that she doesn’t want to see my life the way it would be without trying either.. Looking like I’m not the only coward in the bunch.. I really don’t mean that like it sounds, simply put she is one of the best women I know. I will truly put her on the level of importance as my Mom, and the other great women in my life.. Dr. Pearson has been amazing to me over the last eight years since she took my case over from Dr. Zabad. I trust her judgment with all I have so now that I continue to write me answering the question when asked seemed easy for me due to the fact that she put the offer on the floor in the first place.. Here I go again answering my own questions.. This has turned out many times to be my own sounding board. I’m grateful your all willing to let me ramble on until I figure it out..
Love and hugs Fiona:-)
I don’t even know how to start because this is not a good day. I haven’t a day like this in three and a half years. So, this morning I was able to get out of bed like every other day in the last six months. The change started when I went to the washroom to change my catheter bag. When I turned in my chair to leave the washroom I felt light-headed and had stars in my eyes. It felt like I was having an episode of my paralysis of my collar bone to my breastbone without the actual paralysis. As it turns out later in the morning it was true paralysis not just muscle memory and it was far more than just from my collarbone to my breastbone; it is from my collarbone to my toes. I am a quadriplegic again.
I got out of the bathroom and I felt numbness in my left shoulder bone, then the blade, and then down my arm. The second place I felt trouble was a burning sensation in my left hip. I tried to propel myself out to the kitchen to see Kyle and my left side wasn’t moving and it took me a long time because it is really difficult to go in a straight line with only one side of my body functioning. I was able to push a bit with my left toe ~ I had my slipper on so it was really the grip of that left shoe that helped to propel me. I got to the kitchen and Kyle looked at me and asked what is going on? I tried to show him by lifting my left arm and it took everything I had to lift it up straight out from me but could go no higher than my breast. I said, “Do you think I am having a stroke?” Then Kyle reacted by doing a stroke exam which I passed. Part of the exam included visually following his finger and to move my head left to right and up and down. After that he went to make coffee and I went into the living room which was an easy downhill roll because our living room is sinking a bit. I sat there totally still in the middle of the living room where my chair stopped. When Kyle came in he asked what I was doing just sitting there like that and I replied that was as far as I could get. Then he went back into the kitchen and I pulled myself with my right hand and right toe to the the fireplace which was four feel away. Kyle came in again and turned me to face the TV. He went back to the kitchen to do the dishes and I just sat there, but things were happening in the body. I could feel the paralysis moving in my body from left to right instead of up and down. This had never happened before it was an odd sensation. I tried to redo the same test for a stroke that Kyle did in the kitchen and discovered that I couldn’t move my head at all so I called for Kyle to call 911. He called and talked to the 911 operator and gave her our address.
Kyle was racing around the house trying to get the stuff together to take with us to the hospital. I just sat there knowing I was in complete paralysis from my collarbone to my toes. Within 10 minutes the paramedics were there and they were happy to discover that we had a lift in the house. Kyle went to my bedroom to get the lift and he brought it out to the living room to help them. The lift has 2 straps, one that goes behind my back and the other goes under my upper thighs. There are chains that come from the lift to the straps and then up, up and away.
They moved the lift over to the stretcher and then lowered me onto the stretcher. They strapped me in, took my vitals and they were really bad, I think that is why were were enroute so fast. My Blood pressure was 151 over 99. Kyle followed behind the ambulance.
We got to the Three Hills hospital, the ER doctor hospitalised me. I have been lying here in bed unable to scratch my nose, make a phone call, feed myself or anything else. I got to go to the bathroom in a bedpan for the first time in three and a half years.
Today my spirit is bad but my heart is physically fine. I feel pain in odd places like my hands. My body is heavy, I feel like an elephant is lying on top of me from my head to my toes. My hands feel like they are literally on fire, like when a part has been frozen and begins to thaw. The burning is now going all the way to my shoulder in my left arm.
I’m done for the night, Teena typed as I dictated this content.
I’m supposed to have big news. At the moment it’s midnight and I just woke up. Whatever I’m supposed to be sharing ooh never mind there it is!! I have been sleeping since six. Part of that holding my head up with my fist at the table. I was trying to do this and falling asleep at the table. The rest was in bed when Kyle put me to bed at six-thirty. I was SO tired, no keeping me awake.. I slept until now.. I’m actually still sleepy, but I’ll try to get some of this done.. Okay news is that at two this morning I was on the phone calling Kyle.. I had to wake him due to a huge catheter issue.. I did everything I was able before making the call.. This turned out to not the last call of the morning.. Kyle came down to my room, I was howling, or moaning very loudly.. I had him go over my lines too to see if I really had missed something that was blocking it.. As things turned out I was blocked from the inside not the lines so us fixing me without a catheter kit was completely impossible.. I was in so much pain. Just try to imagine what it would feel like to have over a thousand millilitres of urine unable to come out. A woman’s bladder is meant to hold four hundred to six hundred millilitres for a max of five hours. I guess back to the question holding a thousand millilitres would be completely impossible for you as you wouldn’t be able to, you would’ve pee’d yourself twice by then.. The pain I was in last night nearly unbearable.. It’s a different pain to try to explain more than I already have.. The next call was 911. The ambulance showed up not long after.. Oh thanks heaven I had a great paramedic he was able to back flush my line which Kyle could have done if we had a spare kit here.. This is really on home care at this point because I’m not on self managed care yet, doesn’t matter at this point, but I’ll admit this morning I wasn’t thinking that.. Oh well now I’ll get this figured out on Monday.. Wow what a way to start the day.. I’m grateful for a change the pain exhausted me, I was sleeping within an hour of everyone leaving my room..
Kyle had to settle a bit as he was all dressed. He had all my stuff packed for trip back home from the hospital after I was fixed. He of course, being the man I love was preparing long before the ambulance even arrived. He had done all this without the knowledge that they could fix me in bed.. With saying this, they didn’t know they could fix me in bed either.. It simply was the fact that we had an experienced paramedic. There of course were two, if it was the second one I’d have been at the hospital.. Not because she didn’t know what she was doing, it was simply because Kyle thought she’d never seen an indwelling catheter.. Ooh I don’t think I’ve mentioned how grateful I am that Kyle’s back is still tender. He admitted to me that if his back was good he would have tried to get me to the hospital on his own. I can’t even explain how bad that would have been.. Having to sit up in my condition would’ve put me over the edge.. The only reason this conversation even came up was because I was thanking him for letting me calling the ambulance instead of wanting to take me himself..
Okay this is starting to annoy me a bit even coming at this from Google and not WordPress app is not posting correctly. I told of our beautiful afternoon and it didn’t post it. I’m going to try again..
We got home from town.. Kyle unloaded the car, I put the groceries away. After that Kyle brought out the tree so I could get started on that.. He went out moving wood.. When I finished with what I could reach on the tree I transferred into my electric chair.. I went out to visit with Kyle.. What a perfect afternoon.. I had a moment of being unable to help Kyle causing me a bit of annoyance, it only lasted a moment though. I spent a half hour out there cruising back and forth to the shed with him and his wheelbarrow.. What a terrific afternoon..
Love and hug Fiona:-)