Not Sure

Not sure what I want to write about today, I haven't posted in awhile due to the lack of stimulating life I lead at this time, but I did think of something clever to write last night while sleeping but now due to Oxygen brain i forgot!
Should I delve deep into my psyche (is that how you spell that? good teacher am I) and bring up all the things I really want to say or should I sugar coat it and say, all is fine, life is good, I feel okay?
Ha! thats a fucking laugh!!!!!!!!!!!! No life isn't okay , it blows right now. What makes it okay is family, friends and TV.
Ahhhh TV, sorry family and friends got to escape right now. TV what can i say Ellen, Law and Order, 90210, HGTV, Food Network, Fashion File, FT, Cityline, The Hills, The City....endless, mindless TV that I enjoy. Some may say I watch too much but hear me now when those new lungs come baby it will be me outside enjoying the outdoors with my family, so for now I enjoy TV.

Got to sleep
night TV my BFF
Shannon

Lovin the Christmas feelin!

So today started off good, got up, got my little one ready for the Christmas concert and off to school she went. I was nervous going to the school, so many people so many eyes looking staring wondering why I am on the O2. However, it wasn't as bad as I thought. I felt comfortable and really didn't give a shit about the other people when i was there all I cared about was my little girl and watching her debut. What a debut it was I like every other mother had tears in my eyes when she was on stage. They performed a cute story and song. Charley took the reigns and went right to the microphone for her part and you could here her load and clear, so beautiful.
Resting up now for the rest of the day so i can go and see her ballet recital. I can't wait!!!!
Merry Christmas to all!!!!!!!!!!!!!!

Cold

I am going to be one of those typical Canadians and whine about the cold. Yes I am!! It is bloody cold and I hate it. The only plus to this is that I can stay inside and stay warm while I wait for the call!
BRRRRRRRR........

On a side note today was a weird day for me, I often use that word as I am realizing this as I type. I have been officially listed for 2 months today, but not sure if that is why i feel down. I felt pretty crappy all day but managed to drag my ass to physio. I started a new physio today at Credit Valley, saves me from driving to Toronto 3 days a week. It's a different vibe, very up beat. The people there mostly have COPD and are not on the transplant list but involved in Pulmonary Rehab. Most of them (ok all except me) are 60 plus and older. They must of thought what the hell is this young girl doing here, believe me I thought the same thing! But it was a good bunch of people thats for sure. My mom and mother in law came with me today, such great support I have. I wouldn't be able to get through this without them. So a big shout out to my family! LOVE Yous.


Cheers
Shannon

December 7, 2009

I feel like I had a productive day and weekend. Well productive to me anyways. Got all the Christmas decorations up, tree is up and it looks amazing. Charley and I put it up today so great to have that moment with her, Greg finished it off tonight by putting up the angel on top and plugging in, what a gorgeous tree it is. I truly feel like its Christmas now. Christmas with a twist this year, twist being my health, although not great I do feel hopeful and excited, excited for my bro to come home, excited for Charley to open her presents (went overboard again!) excited to spend time with my family and have that camera in my face in the morning that Greg always seems to manage. I even feel like making cookies and baking which is weird. I think its because I am in the house alot, mostly puttering around trying to find something to do, baking seems ideal, I need to gain weight so what the hell, why not. Plus Charley really loves it too, she does most of the work , good ol child labour!
So far December has been better, I would lie if I said I feel better health wise or if I said I wasn't still scared shitless, or hated the wait, but I have things to look forward to with Christmas and all. I have also gotten better with the whole going out in public thing with the O2 on. Its better, not great, I still feel self conscious but really I smile and make sure I get all dolled up, looking good feeling good! Yes I get all dolled up to shop for 1 hour at Winners!

On a different random though I had the weirdest creepiest dream last night that someone touched the back of my head and I woke up with such a chill it freaked me out, I really felt as if someone was there. CRAZY! Maybe threes a ghost in my house, thats all I need......Maybe it was death knocking....okay maybe I just have watched too many horror films lately.....maybe.....


Stay tuned hopefully tonight I will dream of something nicer, like Brad Pitt!

xo
Shan

Its December already!

I can't beleive its December already. Christmas, presents, family, snow, food, LUNGS? Isn't it weird that the one thing I want the most this Christmas is lungs? Who the hell would ever of thought that one day you would yearn for such a thing. Okay Santa I want, slippers, the last two Twilight books, and oh yeah new lungs!!
Really though I am exctied for my bro to come home, and a bit nervous for Christmas day. I really want new lungs but can't imagine my daughter waking up Christmas morning and me not being there for her, me being in the hospital would kind of such. Double edge sword I guess. I discussed last night with my hubby that if thats the case then I want them to go and sleep somewhere so they can wake up to more than just the two of them, he agreed.
So the waiting continues....shit its hard. Nothing more to say on that.
I was feeling very crappy the last two days, tired, stomach aches, short of breath. Of course when I feel that I get paranoid, wonder if I will make it blah blah blah, your head plays games with you man and its hard not to dwell.
On a good note I ventured out did some Christmas shopping this weekend and felt good about it.
Physio tomorrow, group tomorrow, filled day at TGH.
night
Shannon

Taking a break

I need to take a break, a break from this disease its consuming me. Life is happening all around me and I am still alive why am I not paying attention. Waiting on this list is making me feel stuck and well in limbo. I need to remember that I am mobile, able to walk, talk, sing, laugh, enjoy. Enjoy my life this way and enjoy my life after the transplant. My daughter needs me, she needs me to be that goofy "your so weird" mom that she loves. So I am taking a break, a break from obsessing, waiting, thinking, taking a break from the not so great part of my life. See ya!

Tuesday November 24, 2009

Not much to say today. Lazy day, feeling a bit sluggish this morning so stayed in for the day. I took a nap too which usually I try to avoid as sometimes it makes me feel worse. My parents came over today which was great, they made dinner, cookies, kept Charley and I busy.
I am off duty right now, trying to grab some time to blog, chill and listen to some tunes but as usual Charley and Greg play, she gets hurt and its mommy to the rescue, it sounds bitchy but I sometimes can't stand that every time they play it ends up in someone getting upset! So Greg said he wanted me to write about him in my Blog, here you go honey! STOP THE WRESTLING AND PLAY SOMETHING ELSE:(
night
shannon

Monday November 23, 2009

Monday,Monday, today is a weird day for me. I feel really stuck in a rut, routine, wanting to go shopping buy tons of new clothes and get out of this house. However, can't! No energy to shop so I look online pretending to shop for Christmas clothes, toys and other fun stuff. Its like the new window shopping for me. Then I close off the website before getting to the shopping cart realizing Heh I got not money either! But all is not lost Ellen is on soon....have I really become a stay at home mom or what! I love when Charley comes home, maybe we will go for a walk around the block today, look at nature enjoy the sun. Its funny how she seems to not even notice my O2 tank and I am the one with the issues, got to love kids I tell ya!

I have been following the Journey of a Lifetime Blog by a young mom with CF named Natalia. I feel connected in a way even though I have no idea who she is, all I know is she is a young mom that WAS awaiting the "call" for new lungs, desperatley wanting to be there for her little one, as I do. Well she got the call this weekend and had the transplant. I swear I never prayed so much for someone than I have for her this weekend. Its strange how a complete stranger can really touch your life as such. I feel it necessary for me to comment on all her posts and I realize that I am not the only one in this situation. Crazy how life is, going from the best times ever to really hanging on for dear life, trying to stay afloat and be positive. I have my mental moments where its hard to stay positive, hard to smile, hard to keep a float, hard not to cry! I am human and I hate having to be limited with what I can and cannot do. Its weird how I hardly think anymore that I have PH all I think of now is that I am going to have a lung transplant PH is second, its a thing of the past, weird.

So word of the day : weird


peace
Shannon

Its a good day

Its a good day when you are able to spend it with family and look good doing it!

I got my haircut today, ahhhhhh I feel pretty once again. Man did I need that cut, my hair was so long (long for me) to my shoulders and just hung there. I got a cute shaggy bob still long for me and it looks great, next colouring the grey and roots. Stay tuned.

So alot was accomplished today saw my little monkey swim which was so great. She was showing off like a pro, front stroke, back stroke, diving under, Greg was laughing so hard, she never has done that before, but Mommy hasn't been there yet. She told me she wanted to do her best because I was there. Wow what a feeling.
I got my haircut and Puddy (our dog) did too, not at the same place though! Lookin good Marshalls.

Now its decorating time for Christmas. Putting up the lights, bows and garland outside. I can't wait!! What do I want for Christmas? GUESS!!!!

xo
Shannon

November 20th 2009

What a day. I woke up in a weird mood, not wanting to go to physio at all, I mean its Friday for Christ sake! TGIF still means something to me even though I am not working right now, I still get the weekend with my family and hubby. Anywho....I saw the sun shining and my "coach" better known as Mom was not allowing me to stay home today, I was going to physio no matter what.

Going to physio is at times kind of depressing, the vibe isn't exactly your going to the gym looking hot vibe. Its mostly over 60 men and women with lung diseases and then there is me! We all look around at each other nod and smile and go about our business wearing our super stylish oxygen acutremonts (how do you spell that?). Its weird because we are really all in the same boat, waiting for that call all sporting the latest in Bell Beepers. I can't help to think where they are in the list and how long have they been waiting, some I know have been waiting for two years! I honestly don't think I have that long but thats another story. There is another side to physio though, it can be uplifting and positive for many reasons, one is sense of accomplishment when I finish my program and the other is meeting those fortunate people with the green cards, those are the ones that have been transplanted and are O2 free and are doing well.


Besides physio and my life being consumed lately by my illness, Twilight is out today and I can't wait to see it soon. What a crazy phenomenon this has become, the books rock , movie not too bad. I have been also reading Push the new book that Oprah made into a movie which is called Precious. Holy shit what a crazy life this girl lead, its a good book but disturbing and at times really gross, be warned.

Okay gonna sign off tonight and write more over the weekend. Thanks for reading......
xo
Shannon

November 19, 2009
My first entry, do I belong here blogging? not sure yet. However I know I have alot to say and I think even if I pour out my feelings, thoughts and words on this blog I may feel better and maybe help someone who is also going through what I am going through.

Chapter 1: I am a mother, wife and teacher. I have Idiopathic Pulmonary Hypertension. I need new lungs.
I was diagnosed in 2007 with PH and really the success of the oral medications were great at first but then had limited value as time went on. I really think my body wants to be rid of PH and start a new life, hence the new lungs.
It really has been a huge roller coaster so far, imagine the Comet at Crystal Beach (for those who know it) or the Great Canadian Mind Buster at Wonderland. Either way those coasters are scarey, unpredictable, bumpy and gives you a rush. I wouldn't say PH has given me a rush but I have my happy, fun filled moments, you need them!
Anyways as it stands now I am on Flolan and IV drug that is given via a pump (named the pump Chad he is my other husband) and it isn't working out as well as we hoped. So Chad and I will be getting a divorce as soon as my new lungs come into the picture.


Chapter 2: The waiting game!!! So its only been 6 weeks since I have been on the "list" at Toronto General. I go to physio 3 times a week. (thats a whole new story) and am on O2 24/7. Its a bitch!! Really not only do I have Chad attached to me now I have oxygen on all the time. It does help though, however not really a fashion statement. Vanity thy name is!!