July 30, 2014

Good day,

I will simply start by saying it has been a day. I started off with an early morning Face Time with Denise. This is such a terrific way to start my day. I am grateful to be doing this tonight as it reminded me that lots of this day was not as rushed and spastic as the rest turned out to be. I did my final large dose of Prednisone. I am finally starting to taper down. This is a great day. The second big news of this morning is that I helped the MS Society with some interesting information. I can not speak of it really, I am just proud of myself, I did a good thing. When I can speak of it, I will inform you all of the news. This is a day that I can look in the mirror and be grateful to be me. This brings me back to yesterday too. When the social worker came into speak with me I was told in many different synonyms of persistent how great I am. This shocked me, caused me to cry, and allowed me to actually realize how some people view me.

I missed a call from the MS clinic today. Someone must be thinking something is up as with my visit only being yesterday. I haven’t written much over that last week due to my fear of what people may think. I’m still bothered by all the hurt from before when people were accusing me of being a hypochondriac. It’s amazing how much that hurt still affects me. I was speaking with Terry at the MS Society and it is frightfully common how often this behavior happens. Now with my relapse if that is what this is, I am feeling lost and confused again. I really don’t know to explain it entirely. I know that there have been no relapses with all the people who have had the HSCT. It is seeming that I am once again coming out of left field to cause myself crap. I wrote in here a little bit ago about wishing that I was crazy it would help this make sense to me as my disease should be halted like everyone else’s. When I say everyone else’s I mean that around the world not just here at home. There have hundreds possibly thousands of these procedures done around the world. How is it that I seem to be the one that is going through this. Ugg some days I just want to scream.

I am so swollen. Driving around today has been quite a chore. First stop was the post office. I wanted to finally get a gift that I bought a couple of weeks ago sent off. It became a bit of an issue due to the size. I am so glad that Carrie and the postal lady worked so hard to find a way to ship it safely. I’m so grateful for Carrie today. I picked up her and Quinn at twelve-thirty. Carrie was my legs all day, she’s a good soul. We headed to Red Deer.

First stop in the city was supposed to be Mr Lube. I received one hundred dollars in coupons for my fundraising efforts for the MS Walk. Kyle’s truck was due for an oil change so they came in handy. This plan was a good one with one exception, that was that cars were stacked two deep a every bay. Off we went to drop off Quinn’s walker for repairs. It was at Motions where things turned for the worse for me. It was here that I felt just like the old days. I haven’t pee my pants in three years. I pulled, parked, this in itself became something. I drove in the packing lot and headed straight for the handicap stall. There was a car pulled across a stall right at stall I was going into. I actually had to swerve to the right a bit and park into two stalls. I was stunned that someone would partially cover a handicap stall sideways in front of a business for handicap people. How anyone would think that this is okay is beyond me. I pulled in so tight they certainly got the hint what my opinion was of their stupidity. I had to pee, I was desperately trying to settle myself down enough to make it in side. This as you already know didn’t happen. I stand up and instead of a little squirt my bladder released. I went into the store and straight into the bathroom. I cleaned up and put my pants in the sink. I washed them, I rinsed them, I wrung them out, I got redressed. Memories rang through my mind as this process happened. I have stood at too many sinks for too many years cleaning clothes, and here I go again.

I put a sweater on the seat, this is how I drove around the rest of the day. My sweater came in with me to my sleep apnea appointment. I came home with machine that is going to be keeping me alive. This seems a little oxy-moron to me. I am just saying that if I really am back on the Malignant list why give me a machine that is set up for keeping me alive. I have always thought that this is the way people wanted to die. They just lay down and don’t wake up. Shockingly it is dying in your sleep that everyone has wants, and this freedom is what the are taking away.

Anyways this is seeming to make little sense, so I am going to let you off the hook. I am going to bed. Been a long day. Lots of emotions and thoughts on a bunch of stuff that no one knows anything about.

Love and hugs Fiona:-)

July 29, 2014

Good day all,

Well it was a long day in the big ole city. I left home at nine o’clock. I was up at six with Kyle. I had my smoothie around seven, and shower a little after. I am excited to say that I had my second shower in a row without my chair.

I am feeling a bit tipsy at the moment. I am not sure how long this will be lasting, all I know is that I am not quite right at the moment. I honestly think it is because I am still trying to sort through all the thoughts in my head from my two hours in with the crew of people at the MS clinic today. I will not say that I am actually in a relapse. I will say that no one knows what any of this means. No one knows why the stuff has been happening to my body. Things are starting to happen between Calgary and Ottawa. I signed a release this morning so they could be shifting info between the two different clinics.

You know what I am going to do this in the morning. My brain just way to busy right now.

Love and hugs Fiona:-)

Brenda and I

July 28. 2014

Good day,

I love technology. I am sitting here listening to my bestest friend chatter away. (laughing) well I was. She actually had to finally hang up just so I could write to you. Face Time is fabulous as far as it goes. It sure does have the ability to take away the time. I could not have chosen a better person to talk with.

I went up a large dangerous flight of stairs tonight. Actually going up was no where near coming down. I went up on my own. I came down with one person in front just in case. Then another gentleman on the right plus the railing on the left. I did it though, no matter how clumsy I may have looked I was up and down. I am now a lioness with the loins club. I am excited to be doing something that is new to me.

My day was spent setting up our new bank stuff. All the automatic stuff is now set up going out and coming in. I did all this on a pleasant stress free day. It was my fourth day of Prednisone. I am so excited to be finishing up the huge doses on Thursday. It will be a treat to be down to twelve pills instead of twenty-five. Starting on Friday I start dropping two pills every second day for the next seven days. This I find odd, I have been on these steroids five different times and this is the first time they are tapering off my prescription. They are the doctors though, it is possible that my body needs a rest.

The rest of my day was spent working on my book. I love writing and sharing how my life was and how I became who I am.

Yesterday was a terrific day too. Brenda and I went to the buffalo jump. We took pictures, she was thinking that we could drive by because she had seen my pictures on Facebook. I told her those pictures wouldn’t do the view justice. We headed the rest of the way to my folks place. This is where we spent the rest of the day. We had a great visit. Mom had a salad made up already by the time that I arrived home the rest of the work day was over.

We had such a lovely day. We arrived at Mom and Dad’s at twelve-thirty. Mom already had salad made and a couple of the steaks seasoned. I finished up with the steak and through them on the grill. We sat out in the shade under the canopy of the motor home, ate our lunch and continued on. I was there so long that I didn’t arrive back home until eight o’clock.

It is bedtime now. I need to be in the city for eleven, being it is already one, it is time for bed.

Love and hugs Fiona:-)

Itchy & Licr



Mr & Mrs Dave Francis

July 27, 2014

Good morning,

:-) You would think as tired as I was four hours ago I would still be sleeping! Well in truth really should be, I should have had a brain enough to have taken a sleeping pill. They just gave some to have on hand with my prednisone. Me!! Now why would I do something as helpful as that? I took it las night when I really should not have, because I almost slept in. Now this morning when I have reason to be up early here I lay. I know none of you ever have to class me as quick.

Hit me this moment I’m typing away five am with zero trouble vision. This is a pleasant surprise after yesterday’s multiple fiascos. I’m SO grateful to have had my dear friend Brenda with me on such a day. When I say such a day I’m not kidding. I’ve not had such a shangled mangaled day in a long time. It’s funny really the two events we went to were perfect. Everything for those went off without a hitch.

First was arriving in Calgary by quarter after nine when the birthday party started at nine-thirty. Our arrival was perfect. I asked my girlfriend to save us a couple of chairs as I was uncertain if I was going to get us there before the room willed up. The greatest part of birthdays, besides the actually person having the birthday is the turn out. There is very little to compare to the out pouring of love for those who have worked so hard to survive through the not always so easy days of recovery.

There was also a hard reminder yesterday of what happens when someone does not get the effort it takes. The sheer stick-too-itness when the hard work is required. There was a funeral for one that was way to young to be lost to addiction. Sad realities are we will have this forever. Best way for me to think about this stuff is that we had six birthdays to celebrate and one funeral. The numbers are certainly going in the right direction.

After the meeting the birthday girl, her family and us went out for brunch. We’d all be having such a great time, by the time I looked at the clock it was almost touching noon. I jumped up, realizing the time, and good by’s had by all. We had to go and fast. Wedding was was in Chestemere at two. We were just a bit south of down town.

We took off with just a couple of quick stops which were both on route, so who would have thought this would have all turned into such a mess. We headed for gas at the UFA. Apparently Calgary not known for farming anymore. We might think were cowtown, truth is not so much, only one UFA card lock in town. I knew the part of town. Getting to the PART of town easy, actually locating card lock not so much. This took ten of fififteen minutes of our precious time. With of course a gps that says you’ve arrived without seeing anything there where I sit. Plus a quick pull in where there were a few mechanics having lunch, and asking them. They all four said oh ya it’s right down the way. We go right down the way, no UFA!!! Made one last (truck driver thing!) Walla there it was.. I fuel things are seeming to settle into place. (Laughing) momentary repreave. I finish fuelling. I put my card in to get my receipt, well here I go again. Screen gets this full grey box over where I’m supposed to push the print button. This grey box has a big red x through the center of it. I just stand there thinking how in the hell does this keep happening? What have I done? I give in waiting head over to the other card reader just in time to cut some guy off. I apologized, he accepted, you might think this would gain me a bit of good karma, not to be had. Well okay it did, just didn’t feel like it for awhile. Receipt in hand, one eleven for fuel, worth it? Yes!!

Off to Wal-Mart or so was the plan. Seen a shoppers instead, smaller less walking, PERFECT! Well or not bathroom not so much. All I needed though was a card and a memory card for the camera. Our memory card full. We park, great, inside wonderful. Ask a great lady at the “now” queit till what we’re looking for. Head where she tells us. There are oodles of four gigabyte cards that would be easy for someone to steal (not me) :-) they were just not locked in place. Made no sence to me really, you’d think they be locked because people grab what’s easy.. Anyway I’m searching for smoking much bigger. Brenda catches it sixteen gigabytes yay!! Oh no locked! No one around! Till “now” full. Sweet Brenda now on the move for someone to help. Ya I know “tick tock!” While this is all going on I’ve already been picked out a card, no wasting time. Ladies coming! Yay! Oh no, no key! Okay.. By now you know me, can you just visualize what’s happening to me? Ah found a key, chip in hand to the till. This is all good now. Even with a few in line no biggy, haha so I thought. Till lady calls for some help to open another till. Our key lady walks up, big smiles say next. We get out of our line as we were next one up. She goes around the till and says “there’s no cash drawer!” There we are she can’t help no cash drawer. Now others till all these people lining up. See, what I say about karma? One more time, what in the hell have I done? Back to the other till. As it turned out there was some great karma after all or more like a kind hearted soul watching this lunatic at every juncture. This gentleman stood with Kleenex, I mean ALOT of Kleenex. On sale, package of six for four dollars. I’m talking six boxes. He had stacked four high, lots of Kleenex, he looked at me kindly and said “you go.” I could literally feel the weight on my chest lift. I think if I wasn’t in such a hurry I could have stood there and sobbed with relief. I grabbed my stuff, turned my head an there was my phone off to the side. I picked it up called to Brenda who was already at the door and said “wow that was a close one” while holding my phone up. Now I have everything in hand, out we went. Not even half way to the car we her “ladies” we both turn around and there’s the smiley key, till, no cash drawer women running with the memory card. It had been under my phone I guess. We both said “thank you.” She said “not me it was the gentleman behind you.” I smiled said “please say thank you to him from me.” She nodded. Remember me saying karma was there just not able to see quite yet.

Wow what a day so far!! Do you see why this didn’t all get written up last night? I was SO done by last night. By now we both had to go to the washroom, this would have been where Wal-Mart may have been handy. In search of a place with two stalls. Macdonald’s another mess. This really was by far less of an issue. It was still a bit amusing once I didn’t care anymore. Never in my life have I see where you need to go through the drive through to get to parking at MacDonald’s. This is who with looked to me, well and not even just me, Brenda too. It wasn’t as it turned out, I didn’t care by this point, and neither did my bowel. I drove in the exit only pulled immediately into the handicap stall and I was gone in like a shot. Brenda not far behind, ;-) that could be backwards not sure, just both in.

All of this and wedding arrival at one-thirty five. I was actually able to sit there and take a breather before wrangling in my friend Derek who was walking by. He took in my walker, what a mess of people and stairs. We only stayed for the ceremony. Not even any food as my legs were gone, and way too hot.

We had to sit in the car let my legs settle. AC blasting and much needed. Stopped in Strathmore for ice caps and headed home. I called in ordered a pizza from our favorite place in Three hills. Stopped picked it up. Home blissful home.

Love and hugs Fiona:-)