Beauty for my soul

July 22, 2014

Good day,

I’m putting out into the universe again, and asking all of you to continue to do the same. I’m needing these steroids to not make a difference. I’m needing my body to just simply be mad at me for overdoing like I have always done. I need my body to just simply be tired. I’m needing this to not be happening.

I just took my first 25 50 mg tablets of prednisone. Yes it is that amount 1250 mg every 2 nd day for 10 days. I can already feel myself Zzzzzz around. This amount of steroid make my body feel crazy. I will within the next couple of doses start to swell up. I won’t fit my clothes. My skin will be so tender from the swelling the I can’t wear a bra with straps because I feel bruised. No one will be able to touch me because I will be too sore. This is what I will look forward to over the next couple of weeks. I’m so sad, I never in my wildest nightmare would have believed I would be here again.

I was talking with my sister earlier today. I said to her that my greatest dream for all that is happening is that I wish more than anything to actually be that paranoid hypochondriac that people thought I was before. Yes I know, I know how crazy that sounds.. If I was that person though none of this would be real. Sadly I’m not that person anymore today than I was then.

I talked to Marjorie in Ottawa this morning, she is no happier that they starting me back on prednisone than I am. All for the same reason. Marjorie of course went along with what three doctors out here are agreed on. First my GP, then a resident that did my neurological exam, and finally my neuro-ophthalmologist. With this collection people who have seen me and examined me, where can a person go with that.

I hate watching Kyle get angry. It breaks my heart really. He’s not angry with me even though I feel partly responsible even if it’s not anything I have done or not done. Just how I feel when I see the look in his eyes. I understand this is all based on fear well reality really.

I do love that he simply says “what will be will be.” My sister also basically said the same earlier. I can simply smile at these pure views of love and know they are true. :-) my folks too, my Moms has taken over my line which is “it is what it is.”

I did do some stuff today. Marjorie was wanting me to do stuff. I was grateful to hear this as everyone else has been telling me to do nothing. That I need to sit relax and let my body heal. Marjorie and I are on the same page. I need to do what I can or I seize up really bad. No movement for me is as bad as too much. I did a load of dishes. I did a load of laundry, I put together my lunch. I did up my catheter receipts for Manulife. I prepared, scanned, and emailed some paperwork for my Frameyra. Reading over this I’m pretty impressed with my day.

I lay here knowing that things no matter what they will be, will be exactly as they are meant to be. This statement brings me peace. My dear friend Ralph used to say make a plan, not a prediction.

I spoke with his daughter Angela yesterday, it brought up great memories of my friend. We talked deeply of her father. I’m excited that I have something I can do to possibly help her grieving process. I won’t be able to share my plan due to the fact that it may get read by her or someone who knows her. Just know I have a grand plan that I already put into action. It’s great to find something that gets me out of myself. I will do the absolute best, to get what I want done, done!!

Amazingly it’s already eleven o’clock. I’m going to take my sleeping pill soon so I can have some sleep tonight. I haven’t needed a sleeping pill since my transplant. Without one now on prednisone I’ll be awake literally for days until I would crash out of sheer exhaustion. This would not be helpful.

Love and hugs Fiona:-)

Dry island provincial park

July 21, 2014

Good day all,

Can everyone send good thoughts to the universe for me. Maybe just maybe tomorrow be a new day, with a new wake up. I have been resting for over a week now. I will continue to believe that this is me just being worn out.

Today my nerves have become a bit more jangled by the advise from the MS clinic. My nurse called and she is actually wanting to go on the high dose steroids. I REALLY don’t want too!!!!!!

For those who don’t know what this means. What this means to me first, is a simple statement. My statement is that it means NOTHING good. The thought of the prednisone working terrifies me.

Now for what it really means. When they start me on this prednisone regime IF I start to feel better, IF my body starts to return then it means I’m in a relapse. Which Should NOT be possible. My HSCT was supposed to halt my disease. I’m not supposed to be able to have a relapse. As it stands at this moment I know nothing other than waiting for my prednisone.

The high dose steroid is quite an ordeal. My family doctor needs to get ahold of my nurse at the MS Clinic in Calgary to get the regime. I know what it is but of course she’ll need it in writing. I admit I’m not please with the thought of blowing up like a balloon either. I thought I would never have to go through this craziness again. I also have an appointment with my nurse on the 29 of July. By the time I go for this appointment with her we will already know one way or the other if I’m relapsing. For that matter I’ll know within a few days of the steroids.

I also got a call from the diagnostic Center at the Rocky View Hospital. I have my MRI booked for August 23rd. Didn’t take long to get for that either. The ball continues to roll. I’m not even sure what feelings are attached to all of this. There are many swirling around though. I guess the councillor will be calling tomorrow afternoon.

This morning I had to call and cancel my chiropractor appointment as it wouldn’t have been safe for me. Getting out of the house at this point isn’t possible until the ramp is built. I can get out with help, but not alone. Well at least not today.

I had things to do today that now have been put off until tomorrow. :-) I will meditate before bed to see if this settles me for my morning wake up. For now that’s where I’m heading now:-) I thought if I put the call out at the beginning and end of my blog.

Can everyone send good thoughts to the universe for me. Maybe just maybe tomorrow be a new day, with a new wake up. I have been resting for over a week now. I will continue to believe that this is me just being worn out.

Love and hugs Fiona:-)

July 20, 2014

Oh what a day I have had!! For anyone who gives me crap for doing too much aha!! I’m off the hook today. I have been on the couch all day with the exception of emptying the dishwasher.

:-) I didn’t even get dressed until five this evening. A girlfriend wats to go to a meeting in Red Deer so that’s what we’re going to do. Honestly feeling a bit lazy, I guess good for me though.

Tomorrow I have a bunch of calls to make and a trip to town. The trip to town is definitely dependant on my legs. Today I’m still a bit slow. I have my chiropractor appointment at ten.

I’m sorry but I’m done.

Love and hugs Fiona :-)

July 19, 2014

What a nice day I had. All I have done all day is work on my book. I text a lot of people to make sure I could use their names. The great part was that everyone was excited to say yes.

I was also needing to have some questions answered. There is much of the times way back when that I don’t remember for a multitude of reasons. Some because I was too drunk, some because I was too hungover. Sadly some because I just don’t remember for whatever reason. I have also learned some good stuff that differed from my memories. Te he there are also some people working through their own memory banks to try and help me with a few answers I need. I love my family and friends.

I have to admit digging through some of these memories has been difficult on my heart. Good for me, still difficult. I was working all day on chapter 2. I really was at the computer for well over five hours today. I made great strides today. I finished off most of 1 and 2 nearly finished. I have so many chapters on the go, when everything gets the total fillings in the full book will be together in a snap. My editor is thinking everything should be together in under a year. I have a lot of writing to do if that is the case.

I’m also excited to share that I’ve been able to walk a little bit without help, this would be of Kyle help or walker help. I’m grateful for every step, even if it’s only a few. I’m lying here in bed knowing how tired my few steps were today. I’m pooped.,

Love and hugs Fiona —

July 18, 2014

Good day all,

I will start with the off first with the good part. Last night I drank 2 litres of my poop juice. I was terrified to go to bed for fear of pooping the bed. I’m happy to say absolutely nothing happened. “Yes, I was shocked and a bit nervous about it.” I can’t say why for sure, other than I would have thought I should have, last time I did. I was nervous due to the fact that I thought it might screw up my scope.

I figured out quickly this morning that as soon as I started on my second 2 litres that was all it took. Wow was that all it took. There was Kyle sadly having to clean my mess off the floor. It was just like Ottawa all over again. I live with my angel. Mind you this time I was able to just sit in the tub. I sat on my handicap chair, easy clean up. When I was that sick in Ottawa I begged the nurses to let me curl up on the floor of the shower and poop, they said I couldn’t do that. I wish I knew the reasoning because sure is easier.

After this morning I’m more than grateful if that’s possible, that I’m good for ten full years now. Yay me, ooh and Kyle too!!

I was able to dose off this morning after my tummy settled long enough to get an hour and a hour nap. I almost had a great nap, but there were a couple interruptions. Kyle called at 8 for check in, my Carrie girl text for a check in too. I was tired enough to go immediately back to sleep. I had my alarm set for nine so I would be dressed and ready to go when my Aunty Vi arrived. I slept through the alarm, it was a very good thing Kyle called at quarter after nine. My Aunty Vi was supposed to be here at nine-thirty. I raced out of bed, got dressed. I was heading out when my bowel called me back. The phone rang, it was Aunty Vi, they were outside. I get to the door, realize I didn’t pee. Funny how one thing takes over the other in my brain, back to the bathroom. This has become a very full fifteen minutes.

I now have gone over the fifteen minutes, was only five though. Had to fill my water, take my medicine, and grab my phone. Out the door I went. Aunty Vi got my walker down the stairs.

Ooh can barely wait the end of the month to get starting on the ramp. Speaking of the ramp I need to call the doctor on Monday to get a prescription for requiring a ramp to be built. Nice when this is just a phone call. I think I may call the HR lady at Kyle’s work to see if I can have the doctor fax the prescription straight to the insurance company. This seems like easier overall.

The rest of my day was rather boring. It was travel, hospital, food, travel, and home. The best two of these were food and home. Food because I hadn’t had anything but water and poop juice in thirty hours. I was EXCITED to eat french toast for a late lunch. I was just simply happy to be home. The travel was okay to for travel on a day where I was terrified that I may not be finished yet.

I was home!! Kyle has taken care oh me since.

Good night

Love and hugs Fiona :-)