Sept 30, 2014

Good day all,

Today has been a day to say the least. I spent from seven-thirty until nearing noon on the phone with umpteen dozen people. Right from the bottom of the totem pole to the top. None of it being helpful in any way. I was ran around in circles all day. The phone was ringing so much I was nutz in the head, Lol shockingly I thought I was as nutz as I could be, but that turns out not to be so.

I shouldn’t say nothing came of today, just now when I was going over everything with Kyle he picked up on something I overlooked. With all that has gone on and all the people I have talked to the one thing that I should have seen I didn’t. Helpful when I settle long enough to go over stuff with the level-headed on in the house. The one that stays calm when I’m a rampaging lunatic. Okay, okay I’ll cut myself some slack. After the day I had I am just really mentally and for that matter physically spent. This morning I found out that my benefits do have coverage for in home nursing, this is the opposite of what I was told yesterday. Of course nothing is easy. They need the reasons why the Alberta Government and the Home-Care system isn’t doing their job. Well of course the system in this part of Alberta is apparently broken. This is a statement I don’t say lightly. When I say broken, I mean broken. I’m supposed to be set up for morning care. This you would think would happen in the morning. People don’t show up here for me until after lunch, I mean long after lunch. Most of the time well after one. This is when they are coming here to clean my under carriage (if you know what I mean ha ha!) and get me dressed. Yes this is to get me dressed for the day. Amazingly Kyle puts me to bed at nine, so this is basically my day. If I need to go out before this I do everything myself and try to figure out why they are coming at all. Now that I’m getting sicker by the day they are not wanting to come because I’m too much work for one person and they don’t have the staff to have two. For me to have a lift here they say they need two people here. Everything is becoming really complicated. Now the lady that I need to speak with about all of this stuff isn’t in until Thursday. He is to hoping that my sweet Denise can help the best she is able while she is here. Now is this not the stupidest thing to have to say. My best friend drives for miles to come and visit for a couple of days. My best friend that has cancer for the love of God. I can only pray I will settle a bit over night.

I was praying this same pray last night, it didn’t come to pass. I had an appointment at the clinic with Erica this morning and wasn’t able to go. Pat came to pick me up and I knew at that moment that I wouldn’t be able to transfer into the car. I was barely able to transfer onto the toilet and I had my wheelchair lined up touching the front of the toilet to pivot across. I knew I wasn’t strong enough to safely use my slider board to get in the car. I would have done it if Kyle was home, but never with Pat. My driver Pat is a terrific person, but she is probably ninety pounds soaking wet. If something went wrong it would be a nine-one-one call to get me off the ground, then a damn trip to the hospital for a check up. I would guess sitting here now that I would probably be doing this from there tonight instead of here. Some how making the decision not to attempt fate is a much wiser choice. Erica was kind enough to come by here on her way home for our meeting. I’m blessed to have such terrific people around. I said this yesterday, and will say it everyday when in need of reminders the world is not full of the others from this morning.

I was supposed to be doing book work this morning, sadly my dear Alisha is not feeling well. Please everyone think of my friend, special thoughts for her. Maybe tomorrow we will talk for a while, will depend on her health though and the fact the I have company. I will maybe do up a bunch of my memories on my iPad like I do lots and just email them to her. I will see how I hold up after I get into bed as I really am nearly washed up already and it’s not even nine yet. Ooh just looked at the clock lol it is two minutes too. Kyle shall be coming in for me soon.

The best part of my day was when Denise showed up. Erica was still here, but it was great to have her arrive even if I was still busy. She has gone to visit some of her relatives whom she has not seen in a very long time. I think I’ll already be in bed when she gets back, I will certainly see her first thing.

I really do have to go lie down though as I have been sitting in this chair since seven this morning.

Love and hugs Fiona:-)

Sept 29, 2014

Good day,

Well tonight I am going to try this at the computer. Alisha had a good idea for me to not lose all of this all the time. Her plan was for me to write it all up in an email, or notes and just copy and paste it into here. I will do that another night. Tonight I am simply going to sit at my laptop and do it here. I am hoping I can do it fast enough to get out of the office which is in Kyle’s room. I’m not well enough to safely transfer so I might as well stay in my wheelchair any ways.

I do have some good news on the home front. Okay good news for me. Well and Kyle depending on how it is looked at from his perspective. First from my perspective, the news is that I have full nursing coverage through Kyle benefits at work. I have no worries now of who and how I am going to be taken care of as long as Kyle continues to work at his job. From Kyle’s perspective not so hot as he has to continue to work. He is already two nearing three years past his retirement goal. He used that money up saving my life the first time. Now he waved it and it was an amazing two years until now when here we go again. This is the comment he arrived home to tonight. I said “Kyle I have some great news.” He asked “what’s that?” Well here it goes. “Here you can contentedly retire at sixty so long as I die in the next two years.” Okay now everyone relax, this is just my very sad sense of Ha Ha! Really looking at it from our perspective it’s not so bad. My suffering would be over, and Kyle having to watch me deteriorate everyday would be over. This stuff is very real for us and many people like us. Makes me wonder how long the hurt is supposed to hurt. I was speaking with someone else about this sort of stuff today. This question arose. It had nothing to do with me or anyone I personally know, but it sure can make a person wonder.Any ways back to the good news sorry didn’t mean to run off there, as my fingers were just flying  so I assume it was meant to come out. Well no one can say the truth isn’t spitting out of me tonight. All I will say is that Kyle and I have one hundred percent coverage for when things go seriously sideways next week. This isn’t me be dramatic, it is me living in here. I guess what it is, is being smart, and good preparation. When I woke up yesterday as I did, it was a great reminder of how fast things have, can, and probably will happen. I need to be smart and prepared, and not a fuel thinking I will just be automatically fixed next week. I have ten more days total of my steroids and what happens after that is anyone’s guess.

I speak of my vision off and on. I do that because realizing how bad it is actually getting truly terrifies me. I had to put this in here tonight as I was speaking with a friend of mine earlier on Facebook about it. I’m grateful for spell check for sure. I get that little red line underneath and know that I have to fix it. I can see well enough so far that I seem to be able to shake my head and clear it well enough. Ha Ha!! Another one.. I’m trying I swear to God to make this as easy on you as it is on me. Saying I’m terrified is not so much about my vision as what Dr Pearson said about it on Thursday. It didn’t really hit me until I was talking with Sandy. It was chatting with her when the talk of my sight came back to me. I already knew that my issue was coming from my brain stem not my optic nerve, or my eyes. Dr. Costello had already told us that. It was how Dr. Pearson said it that got my attention. She said “your double vision is coming from your brain stem, and it is because your pathways are get blocked.” I knew what this meant because for a very long time she has been saying that my brain is amazing at re-routing new pathways. I have come to accept I guess that the space at my stem is kind of full at this point. Everyone was shocked how I held on so long before. Truly this is not me just talking.

**Laughing**  Okay I really am. My doctors really were stunned that I was able to function as well as I did for so long be as ill as I was. Dr. McKernan used to look at me in awe when I would come in off the road stop for an infusion of Chemotherapy go back to my truck have a nap for a couple of hours and go straight back to work. He also said to many times that if he took even a quarter of the amount of muscle relaxants that I took in a day that he would be a puddle in the corner. I had taken enough to put a horse down. This was just so I could make it through a day, amazingly I had no reaction to them at all. I mean other than the fact that I could just keep going without too much pain. Wow I’m really on a tear tonight. Maybe I’m doing all this thinking it will go missing.

All and all today I have had an okay day. My sweetness got me out of bed this morning. He helped me onto the toilet, happily I was able to pull myself up and back onto my chair. I went to the side of my bed and was able to do five sit to stands using my arc-r rail to pull myself up with. This is terrific in comparison to yesterday. I then spent the day fuddling with paperwork. Bit by bit I can get quite a bit done if I’m nice to myself. I got sent out four letters with Kyle for the mail. One was an amendment for the Foothills Hospital for my medical files. Wow is that going to be quite the read when they come in. I think I will probably cry A LOT when I am going through them. This is information for my book as I have very little memory of what was actually happening to me. This is now sent off again. I’m also waiting for the files of my crash from the lawyer. I’m certain this will be an interesting read too.

My beautiful masseuse came at nine-thirty. I want to say it was as easy as a one, two, three to get me on the massage table, well I’m guessing you have figured that not to be true. I did Together we got me up and down. She was shocked at how tight my back was. All of those nasty little inter-coastal muscles are at it again. This is rather bad and painful news for me. She worked very hard to settle what she could. I have to say she did an amazing while she was on them, sadly as soon as she moved onto another group of muscles they were right back. My sweet Occupational therapist, and Home Care were here too. Busy, busy day. I”m out of here for now. Way too much truth coming out of me tonight..

OOH greatest news of all.. You are not forgotten my sweet. Denise will be here tomorrow afternoon for a couple of days.. I’m so excited I can barely stand it!!!!

Love and hugs Fiona:-)

Sept 28, 2014

I’m uncertain what’s happening with this idiotic blog. Yes, yes I’m extremely angry at this moment. I guess the upside to this is that I’m angrier at this stupid thing than I am at my body, today that’s saying something take my word. I just wrote for nearly an hour. I had my whole tale of woe today. I guess it’s a sign to suck that up. It really has been a sucky day, this pretty much just topped it off with a big fat turd!!

This morning started with the fact that I couldn’t get out of bed on my own. Actually all day I’ve not been able to do anything on my own. Emotionally I was having an ok day under the circumstances of course. It was great in comparison to how angry this thing makes me. This is the third time this week where it’s only published a paragraph of what I’ve written. I get tired of putting my heart and soul out to the world and having it kicked out.

I’ve been asked by four different people if I should be in the hospital. I continue to say if I needed to be there I’d be there. Shockingly I’ve been there enough to know if it’s required or not. Kyle thank heavens was not one, or my family they too are all off the hook. I’m grateful for the concern please don’t get me wrong. I’m not out to hurt myself or anyone else. When things become too much and the house isn’t up to par yet I’ll go until things are settled here.

My occupational therapist has been steadily keeping up with the constant changes. She stopped by on Friday on her way out-of-town, then coming tomorrow on her day off she’ll be here again. I’m absolutely blessed beyond words by my therapists up here. I won’t spread that to my doctor yet though, this is seeming to be an only time will tell a situation. I will enjoy and be grateful for everyone else.

I’m overjoyed to say that my back is feeling so much better now lying versus sitting, lying wins. I feel so relaxed in comparison, paralysis is painful when it’s moving. Last time this was happening I was sleeping. It feels at this very moment like I’m back to normal. I don’t in any way feel bad. My muscles feel strong. I can clench my butt cheeks, as far as I’m concerned this is the best I’ve been all day.. Yay me.. I’m going to take my medications, pray, sleep. Tomorrow is a new day!!!

Love and hugs Fiona

Sept 27, 2014

Freedom,

Freedom, absolute freedom. I am so excited that I have full freedom. My sweet Kyle went into work this morning to cut up the plates to cover up a portion of the Texas gates so I can go across with the electric wheelchair. I was already over at the neighbor’s house for a cup of coffee. I went cruising down the main road for a ways. We are soon heading into Olds to get some groceries for the week ahead. While in town I’m going to buy a little carry bib to keep Licr in when we go for a run. I will keep Itchy on a lead to run out ahead of me in the chair like I did last summer at my folks place. Licr can run in front with Itchy too, but when her little legs get tired I’ll put her up in her carry case.

We’re home and Licr likes her little carry case.  I took her around the house a few spins. I’m certain she’ll be good while we’re on the move. Today was an odd day. Well okay not the day, just the afternoon. When we were in Olds today the odded thing happened. We went to the pet store to purchase Licr’s little case. Kyle asked if I wanted to roll myself over to Sobey’s. I jumped at the chance.  *JUMPED* Ha! ha!!!! Man am I good today!! Well anyway, I headed out. I’m hit the street cross one cross walk, I headed out into the second. There was a navy blue nineteen ninety something SUV. They weren’t called SUV’s then. It gave me quite a start. It wasn’t so much that they looked right at me and kept coming. They finally decided to stop. They were nearly half way through the intersection when they made the choice to stop. By this point I’m scared and then angry, I waved at them to go. I said out loud you might as well go your basically through anyway.. My wave was angry for certain, not angry enough to have one yell at me through the window. Plus they then continued on and parked over across the lot. They watched me, until Kyle came around the corner. I waved at him, that’s when they pulled out. I was actually scared a bit. It was then I looked up and there was my cousin Kim in front of me. My second cousin actually, but she was there and I felt better. Right then too Kyle came walking around looking for me. The bad guys were now long gone thank heavens.. They were just kids, punks I should say. I would guess seventeen or so, they had me nervous though. All this because they nearly hit me in the cross walk in the first place. Oh well, if this is the worst part of my day, which it was then not a bad day..

I’m glad to say my vision a bit more settled today. It’s a bit more off now tonight only because I’m sleepy now. I bought a long pair of Woolley slipper socks to see if they would help with my spasms tonight. I’m hoping with a bit of steady heat they may lessen tonight. Well lookee there it’s 1 o’clock in the morning,  I have my super-duper new socks on and sadly they’re not doing anything to stop the spasms. We have a sock update it’s 130 and they seem to be holding their own will know in the morning.

Love and hugs Fiona

Sept 26, 2014

I want to say good day, I really do..  I say good day..

I’m doing alright under the circumstances of yesterday. I know looking back is a waste of time. There is no but here truly, just a change in days, and steroid amounts. I dropped down to twenty milligrams this morning. I rapidly noticed this afternoon things were already changing. I’m sitting here now with a patch over my right eye. I’m able to see one thing at a time this way.

Okay I’m sitting here getting a bit nervous. Kyle wanted me to try to the patch over my left eye to see how that would be different. It is very different. I had to change the patch back to cover my right eye again. Having my left eye covered was a bad idea. It’s seeming that I’m having double vision in my right eye alone. The upside to the patch being on is that my headache is not as severe. I’ve been dealing with this vision thing for quite sometime. Some days are better than others, but it certainly has been getting worse. I spoke of it last night, I’ve just avoided going into stuff. Writing about things make them seem more real. Don’t get me wrong not complaining just becoming more truthful, or you could say less secretive, which really is the same thing. Secrets, and lying are the same thing, so I better behave