Aug 28, 2014

Not a good day,

I’m having the worst day I have had in months. It’s amazing what twenty-four hours can do. I have been crying for hours. I’m not sure where to start with this. My new family doctor up here set me off today. Plus I’m upset with my walking speed. I had to do a test for my Fampyra drug. My first 25 foot walk was done in 5.34 seconds, then my second one was done in 5.20 seconds then today 5.47 seconds. This is the worst speed test I have done in two years. My first test that was the 5.34 was in 2012. Now I sit at 5.47 in 2014, this seeming that I am certainly going the wrong direction. Plus I am back to 6.5 on the EDSS scale. This to is going the wrong direction. In July of 2013 I was in Ottawa seeing Dr Freedman and Dr Atkins and I was 3.5 on the EDSS scale. I was doing amazing. I’m sliding, I’m scared. I may talk tough and think I can leap tall buildings in a single attempt. What is real for me is that none of what I think I can do and what I can really are so not the same thing. Oh look I blink and now vision is slowly drifting away. As a matter of fact I feel kind of like I’m floating away from the screen. I’m certain reading this you maybe feeling as odd as I right now. Possibly this me wishing someone else feels like me. What an awful thing for me to say. I honestly wouldn’t wish this on anyone. I’m having an off day.

Man I wish I knew what was happening to me and why. I ‘m feeling broken. One of my nurses in Calgary told me today that Dr Pearson thinks I’m relapsing, and Ottawa is disagreeing. I feel lost between the world of fixed and broken. I know I keep saying how okay I am with all that is going on. I admit that most days I am okay with whatever is happening then there are days like today where I am not okay with anything. I am so sad I not sure how to cope. I just cry and cry. Kyle came in from working on the ramp tonight around eight. He worked all day at his full-time job, then comes home and puts in another five hours outside doing all he can to make my life as simple as possible. Then when he comes in the house I’m falling apart emotionally as I have been most of the day. He says to me that it is probably because I had such an emotionally charged yesterday that today it’s possible that I am just over done. This make sense to me, I am just not sure if that is the reason I’m such a basket case today.

All of this craziness started for me when I went to the doctor’s office. When I showed up there I checked in and waited for half hour before anyone even came into my room. Then when someone came in it was yet another resident instead of my damn doctor. My first annoyance was that the resident didn’t even tell me her name. I’m tired of going to the doctor and never seeing the doctor. Never would I have thought that I would be so dismissed. I’m not sure if I was actually dismissed, it should do feel like it though. The fact that I called into the MS clinic at eleven just to get the information to fill out the form. When she wasn’t even willing to come in the room talk to me. I have to get over all this today. I hate feeling like this. image

I need to get my shit together tonight for tomorrow. I’m heading into Red Deer I some running around that I didn’t have time for the other day. Plus my legs could not stand to make on more stop. I’m uncertain how I will do tomorrow, right now that doesn’t matter as I’m sitting on the couch. Tomorrow will come and tomorrow will go. I will figure it out I suppose.

No more tears, now it is’s about facing my truth.

Love and hugs Fiona:-( :-)

Aug 27, 2014

Good day all,

I have had the best day in a very long time. Exhausting mind you, but none the less the best day. I had seven people down from Calgary for supper, meeting, and cake. We had laughter, and tears. All of joy and gratitude. Most of my treasured people were here tonight. There were few missing that saddened my heart a bit. One was Ralph even though I know he was watching. One is my sweet Linda Lou, as she put it had luxury problems tonight. :-) her battery was dead on her Harley. I know I can hear your sad heart for her luxury problems. Thirdly my dearest friend Denise. She had chemotherapy this morning. It was a really scary one for her, and I’m guessing she’s not feeling so hot tonight. I’m so honoured to be surrounded by such love. To all of you who came from near and far to celebrate with me. To my parents who came and gave me my birthday card. I am the luckiest girl I know.

Truer words never wriyyen

Truer words never wriyyen

I’m so tired tonight the at twenty after ten Kyle woke me off the couch and put me to bed. I had so much to share with you about my day. I’m writing now unaware if I will be finishing yet again. This is the third night in barely a week where I bring the iPad into bed to do some work or blog and I awaken with it on the floor. Tehe it was just about going again.

It’s two thirty-seven in the morning. I’m thinking I may possibly be awake enough now to do this. I look around every room that I sit in, I’m always taken aback by the power of love. I’ve noticed that there are two very distinct emotions that can change the entire feeling about them. One is love, the other is anger. I’m always so eternally grateful that my dear friend Ralph was their top lead me down the correct path.

Anyway on to other stuff.. I drove into Red Deer around noon to head in to pick up my new car. I have a picture.

The new ride. I'm so grateful, thank you Kyle for all you do. We have worked hard to get here

The new ride. I’m so grateful, thank you Kyle for all you do. We have worked hard to get here

It’s funny after all my crazy busy today I stop at Staples to return an address book that I bought a few days ago. Things were supposed to ;-) turn out better than the original plan, (laughing) everything did of course because original plan was the universes plan the whole time.

Funny how sometimes I forget I’m actually still sick. I’m standing at the cop booth at Staples and the girl behind the counter is watching me. It wasn’t until I seen the look on her face that I realized I was tipping over. I was just standing at the counter. Okay not JUST standing at counter. I had been there a good half your obviously long enough for my legs to start screaming at me. I always feel like I’ve been here before over and over.. Oh right wait a minute I have been. Once I seen the look on Crystals face I register I was doing something odd.. I caught myself in time, but it had been a close one. I was standing there politely waiting for my copies when over I started to tip. To the right only slightly of course, certainly enough to raise her attention and the of course mine just in time. I’m not sure if I doubled up on this tale! Not going back to check though. It took me all night off and on through my non contented rest. It’s now remarkably five fourteen and I’m going to hit publish. :-) hope this makes sense.

Love and hugs Fiona:-)

Aug 26, 2014

Good day all,

I seem to be having an okay day. It is late already, or late enough. I have been on the phone nearly literally all day. If not the phone the computer. I made salad for my lunch. I spent an hour from eleven to noon listening to a Webinar for the Loins Club. I’m uncertain if they will think it was a good idea for me to do that as we as club now have home work. They left it to me to the decision and it has been made. I then spent the entire afternoon working with Alisha on the book. We we on the phone for three full hours. It is amazing to me how much of life is coming back day by day. There has just been so much though the years. Amazing just amazing. It is all great stuff though, good for my spirit. Okay not all great stuff, still good for my spirit though.

My day started at six, I cleaned up the kitchen just in time to make a mess for lunch. Kyle did catch me doing something that I was not supposed to be doing. I have been taking so much medication that I have started to screw up what I am doing. I never registered it until he said it this morning. I was standing at the kitchen counter with my cup of coffee in front of me and my smoothie ready to take my pills. He stopped me and said “Fiona have taking your Synthroid in the morning with your smoothie’s?”  I replied “yes most days, certainly always in the morning.” He looked at me with a look that I can’t quite describe, and says “you are not supposed to take Synthroid within two hours of a dairy product.” I was stunned. I’m still stunned at my memory. I had been being so careful. I would have to say it has been since the move that has been screwed up. I can’t remember the last I took it properly. Omgoodness! This is really bad. I have steadily gaining a bit of weight since being here. Not much just inching up, which shocked me as I had been working out pretty regular. Now that in itself makes a bit of sense to me. All of this was long before the Steroid weight gain, or water gain I should say. Well I am positive I have actually gained a good ten pounds of fat too, just because I seem to eat all the damn time. I am trying to eat the healthiest food in the house, it just doesn’t seem to curb my cravings for salt. I have been a lot of my pickled stuff. I have pickled beets, I have a delicious for bean salad, and dill pickles. These seem to help the best.

I am quite concerned now about my thyroid medicine. I am having to run into Three hills tomorrow to the pharmacy anyways to get catheters so I will ask Peter what could be happening and if I can solve the problem just by behaving properly. I sure do hope that the answer is yes. This morning I did them properly. I waited for a couple of hours to take it alone. I did take all the rest of my meds including my daily dose of steroids. I’m still sitting at eighty milligrams, I think that is for another five days. I then will drop down to sixty milligrams for two weeks. On and on and on. I am sitting here knowing that I have been waiting for a call for two days now from Coleen my MS nurse in Calgary. She told me on Saturday that I would hear from her on Monday when she went over my MRI results. It as you know is Tuesday night and no call yesterday or today. I’m going to stick with my Mom’s old adage “no news is good news” My steroids for the most part are holding my body at bay. It seems I only fade into the late afternoon and evening. I do seize up if I have sat for too long though, so I do try to watch that.

Tomorrow is a huge day for  me. I am heading first thing to run some errands beyond the pharmacy in Three hills. I have to drop by the hospital too. I need to have the finalization of my immunizations set up with the health unit there. I just found the paperwork that was sent up with me from down home. It was lost in the office for many months. I don’t think I am due for anything until January so it’s really not a big deal.  I’m then straight off to Red Deer to do a few more stops. I have some returns to do. I have to drop off my TV at the warranty place and pray like the dickens it can’t be fixed. It would be great if it was pooched beyond repair because then I would give it back, get my money back and bay a better TV. This one broke down two months past it’s year warranty. It was a good thing that I bought extended warranty or I’d be screwed. After this stop is the best stop of my trip. I am picking up my very first BRAND NEW CAR in my entire life. It is actually my Ford Edge SUV. It is brand new though. I am so excited!!

I am then headed straight home as there are a collection of people coming from everywhere to celebrate my twenty-three years sober. We are all meeting in Three Hills for supper then coming back to Trochu for a meeting and home-made raspberry cheesecake made by the best cook in town.  I am going to have the grandest day tomorrow. Writing it all down doesn’t even make it seem real. I guess tomorrow as things are playing out it may all start to come together for my heart and mind. I am going to send out all kinds of wishes to the universe tonight to hope that my body holds out. I really should be okay as driving has never been the problem. it is the walking that causes me the grief, so all should be good as I really don’t have that much of that to do.

I am really needing to go to bed though as it is midnight I and I need to be rested for tomorrow. It is seeming the longer I sleep the more swelling comes out of my body. Please if your up for it put some happy thoughts out for my day tomorrow. I am just giddy with the fact that my folks are coming tomorrow. They have not been able to be out at a cake since my ten years. Even that one my Dad shouldn’t have been at, it was very hard on him because it was down stairs, It caused him great pain to be there. This time it will only be sitting pain instead of going down stairs that he should never have had to do. I think back now and I still feel bad for asking.. This time it is close and simple and hopefully a whole lot less pain for my Pa.

Love and hugs Fiona:-)

Aug 25, 2014

Good day all,

I’m going to start this off with a happy picture from my trip to Calgary last week. Not the trip on Saturday, the trip when I was hanging with the girls on Monday.

More love and laughter..

More love and laughter..

I started with the happy as I have had a great day. Tonight I was sponsored into the Lions Club. I am so excited to be doing wonderful things. This is the first time I have become a part of something where drinking can be involved. I really have not been around any kind of drinking in many years. It was a terrific ceremony, I was honored to be invited. To be a part of something so soon in my new town is a great thing. It is also at the Lions Club where we hold our meeting on Wednesday nights. Tonight being a great night starting from me being smart today.

Things started off really well. I slept all night. I was bed by eleven and slept through the entire night until six-thirty this morning when Itchy woke me. I could have probably continued to sleep with the exception of twenty-five pounds on my legs. Sleeping is not over rated. I finally slept. This seven and half hours of sleep that had been the most I have had in nearly two months. I have had a couple four-hour nights, those were the longest for a long time. The rest have been more one, two , or three. I Kyle was thanking me for not killing him over this period. I laughed and replied “thank you for not doing anything to cause me to do that.” I said “you came close a couple of times.” Oh I am not sure how I have survived all these steroids for this length of time with no sleep. Kyle said “I really done not too bad.”

I finally for the first time since we’ve lived here, or really since I’ve been sick again got my head out of me ass. This has been a process of letting my ego/pride get away from me. I sit here and complain about not being able to clean the house as I should. I sit here and complain about what I can’t do, or thought I couldn’t do. After today it is more of what I wouldn’t do. What I wouldn’t do is sit in wheelchair. I apparently am to well for my chair. This of course is just ego thinking this. Today there was a huge pop in my house. That pop was my head coming out of my ass. Seems kind of like a big bomb going off as the size of my ego is no way comparison to my you know what. Wow it took me a long time to figure out that I can propel around the house in chair and vacuum, wash the floors, dust, and amazingly I could clean base boards too. The baseboard were a bonus that I never thought of until I was in my chair and could reach with little effort. Actually that is a lie I have often thought of cleaning the backboards, but knowing that if I got down getting up would be top much effort. Doing everything else was so simple I spent quite annoyed with myself for not doing before today.

I put a few things in order for myself today. With my schooling I was able to start putting things together of when I was starting to falter. I had been doing amazing sitting at a four point o average. Granted I only had eight exams under my belt, with this I was doing great. I stopped in January and have done nothing since. It was not long after that I started asking the doctors to be putting me back my medications. It somewhere back there that things went sideways for me. Odd how realizing that sent me into wanting to hide my head in shame. I’m getting sleepy again now, I’m thinking I may have to cut out early and go to bed when my body is yelling at me.

My afternoon was spent with Alisha doing book stuff. Today turned into a chat day. I think it was good though as she now has a bunch of new insight into my head, I’m thinking scary, but helpful. I really starting to nod off, it is time for bed.

Love and hugs Fiona:-)

Aug 24, 2014

Good day,

I’m exhausted, sad, unhappy. Only one of them for a reason. This maybe all you get. My day started rough and it has been that way off and on all day. I ran into Olds to get some paint brushes and a view groceries. I was one more time grateful to be home. I really love you all, I’m calling it a night.

Love and hugs Fiona:-)