Patience

The nursery is really coming along now. It looks so good I can't believe it's not even done yet. Today I picked up a few odds and ends that really made the space pop. It finally looks like a little girl is going to live there, finally!


Tonight I will start the mural on the window wall. I hope that it will not be a big job, since it's just a few wallpaper-like elements that I will paint on. Wait and see I think it will be amazing! I think once that's done I will take some pictures, since I really want to show it to everyone. The chandelier is not here yet, even though it was ordered many moons ago....many many! And that's the final big item to come. But may be I will take come pics in pieces to give everyone an idea. We've been working so hard on that room, that it needs to be seen by someone other than us!! I was hoping to have it done much sooner, but with everything taking months and months to order, and my being sick, things have been really slow. This little girl better not think of coming to us earlier than expected.


Today I took a walk down Queen Street West and stopped at a really beautiful store named Chatelet Home. Imagine an antique store for your little princess. The most beautiful things you can imagine for a nursery, for a little girl of course....

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Okay, so the above was written a few days ago. I never finished it, as the last couple of days have been terrible. Generally I have not been feeling well, and last night I was terribly dizzy and nauseous. Strange symptoms that freak me out, and make me worry. This morning things seemed to have calmed down, so hopefully the day or two in bed has helped me out. Today, I hope I can get more done and more life lived.

I got my assessment package in the mail, and the dates for all my tests and appointments. Looks like by May 22 it will all be done with. From May 19th - 22nd the days will be long and the tests quite draining. I am not looking forward to that week, but just want to get through them, and get myself on that waiting list. That's my goal. Only then will I relax and focus on my babies birth. It looks like I will have a month or so before our little girl is born to get used to being on the waiting list for tx, and just focus on her arrival.

I think about what's ahead all the time. ALL the time. So many things are happening, I cannot imagine all this madness will be over within a years time. There is a level of calm that you have to gain during this time, otherwise you'll lose your mind with worry and thought and calculation. I just go day by day, night by night, and try to stay calm and focused. For those who know me, know that I am quite the Type A personality. I am demanding on myself, those around me, the world in general. I love to control things. I love to learn and grow and move ahead, never dwell or go backwards. To be in this situation right now, in many ways, is the Type A personalities worst nightmare. Total loss of control. Loss of the ability to demand yourself to do anything, your body won't allow it! AHHHH!!!! That's how I feel on most days. This, more than anything, is a lesson in patience.

Patience, patience, patience.....

Blah blah blah....

That is how I feel....blah...for so many reasons. The antibiotics that I have been on seem to not be working as they should so they are switching them up. Since I have had allergies to one of these medications before, they are desensitizing me to them. This means that over an eight hour period they administer small doses of the drugs, and make sure that there is no reaction. This gets your body used to the drug, and they are then able to administer the full dose from then on at the ward (6 Bond).

Desensitization is done on a separate floor, at the step-up ICU unit, in case you have a reaction. It is an open unit, so I am in a large room with 3 other patients. Since it is step-up, these are critical patients, so mostly very elderly patients, screaming in pain all day. Poor people. I tend to think that if these people saw themselves in this position (if they were actually aware and alert) they would not want to be in this state at this age, who would? It's hard to listen to them all day. It's also hard to listen to how doctors and nurses treat them also. Karma, that's all I have to say!

For some extra fun, today, they were doing an xray on one of these elderly patients, in the room. While the xray was being performed, the staff left the room as to not be exposed to the radiation. The patients (including me) were all left in the room. I asked them why they were leaving the room and I was not, and they said that they did not want to be exposed to the radiation. Since the patients could not walk, we were to be exposed to the radiation (I stress again that these other patients are completely sedated or close to it). I told them I could walk (I can walk just fine thank you) and since they didn't want to take the time to unhook the few monitoring tools from me, they told me to stay in the room, that there was little risk. I told them that if the staff was leaving the room, I would be too, little risk huh? then why leave? I unhooked myself (it took me less than 30 seconds to do so) and left the room. I found the situation ridiculous! It then took me another 15 seconds to hook myself back up. It's hard to have respect for these people, really. As a patient you get treated like a second class citizen. I always fight for my rights and seem to really not handle well when there is no consideration at all for the sick. It boils my blood.

As CF patients (and any other patient with a chronic condition) we know so much about our illness that we should really be listened to when it comes to our care. It's such a fundamental part of medicine I think. Call it bedside manner, call it just being smart, but why does it seem that the last person that a doctor wants to work with is the patient? I have dealt with this for so long, that I am at a loss for words as to how terrible things can be in here. Recently a friend of mine told me that it seems that we have to be the most focused and sharp about our care when we are the most sick. And that's so true. When I need help, and need for someone else to take over for a little bit with my CF care, I always have to make sure that my meds are correct, and that things are not missed. The funny part of that, is that at home I miss less treatments and get more sleep (in face I never miss anything), than I do when I am at the hospital. A part of me cannot wait until I am at Toronto General Hospital, the worlds leading transplant center (where the first double lung transplant was done, and where they continue to excel on the world stage) The world's first successful lung transplant was performed in Canada in 1983, followed by the first bilateral (or double-lung) transplant in 1986. Canada's lung transplant experience is highly regarded internationally, and the country's lung transplantation rate is 5.3 per million population (PMP), compared to 4.7 PMP in the United States and 2.9 PMP in France. Hey, that's something to be proud of!!

As for an update, instead of just a rant on how much I hate this place....I am stable, but just when I was starting to feel better, I got worse. Up and down. Hence the new meds. So I am having the transplant meeting tomorrow. It looks like it's heading that way. I am getting more accustomed to the reality of that, and the more tired I get of being here and of not feeling better, the better a transplant seems. So tomorrow morning I will get the package to read and get introduced to it all. Then we will book an assessment date. Bring it on I say.
Meanwhile Martin and I decided on a name for our little baby girl. It's 100% certain now, and we call her by her beautiful name when we speak about her. It's a great name. Different, but not strange. Pretty but not too girly or childish. It will suit her as a girl, and will be perfect as she grows up. I can't wait to meet our little bunny.

Thanks everyone for your thoughts and prayers. I can feel them!! I really can!!