Time is something I feel is lacking lately – this surgery is coming up so fast and I have so much to do beforehand. It is June so of course I have report cards to write as well as organize the end of the year. Luckily my administration treats me like a family member and have been amazing. Another teacher at my school is taking over my class and I know they couldn’t be in better hands and I feel so much comfort in that. They offered to have someone else write my report cards but I can’t let them do that so I am working hard to try and get those done on time. Unfortunately I don’t see it being possible to pack up my classroom so hopefully that isn’t too big of an issue – again something they said they would take care of. We are reorganizing our school as well and where we are teaching and it looks like I have to move classrooms which I begged not to do but what can you do. I just feel bad leaving that for someone else to have to take care of. At the same time there is a part of me saying…don’t make your last couple of weeks before surgery all about work. Enjoy your time too, just in case.
It has been really hard being so far away from my family during all of this. They do the best they can from Ontario but it sucks only being able to chat on the phone sometimes. I hate going long chunks of time without seeing them because I have changed so much physically I am afraid to shock them when I see them. I also hate making them worry so much about me because I know they do and it is just as hard for them to go through this as it is for me – maybe even harder. It breaks my heart to hear the worry in their voices or my mom crying because I’ve phoned in tears about how I’m feeling. I just let the stress of life get to me and then think about the negative parts of this disease and have one of my lows where you can’t help but cry. I just don’t always know who else to call because it is my family who I know I can count on for comfort, reassurance and unconditional love. I know they don’t care what I look like and just want me to be healthy again. They have just gone through so much in the past couple of years I feel bad adding to it, even though I know it is beyond my control. I definitely didn’t ask to be sick! My mom was diagnosed with Addison’s Disease and has to be on meds for the rest of her life (though she is doing great), my dad is recovering from his second round of cancer, and then my dad’s mom passed away this year as well. Of course just the regular daily stresses as well and my sister went through a rough time with her postsecondary schooling and has moved home which wasn’t the smoothest transition for any of them. Despite all of this going on they have really been there for me and I hate that I was refusing to go to the doctors when they first asked me to. I really couldn’t face another one thinking I was just fat and lazy though. I am glad I finally did and felt so much better once a doctor told me I was crazy for thinking it was aging because I am young and there is something legitimately wrong here. My mom also flew out to see me in hopes that she would be here for my IPVSS but of course it was scheduled for not long after she left. It was still nice to just have her visit though.
An ex-colleague and friend of mine here in Calgary actually met another woman who also has Cushing’s Disease. We exchanged information and she met with me to talk about her experience and to give me support as I go through this. It was comforting to know I wasn’t alone and that she seems to have recovered fairly well. There was some long lasting effects though and she seems to still suffer from it 9 years after her surgery. It was also unsettling because she is still suffering and I was under the impression symptoms go away following surgery. She also told me a story of a girl dying during the procedure which really freaked me out right before I go in! I do think it is important for people who are going through similar things to share their experiences though. It is nice to know you aren’t alone and you can give each other such valuable information and comfort.
I am definitely looking forward to something being done to treat this disease. I have been trying to live as normal a life as I can with it but it truly is debilitating. It is hard to face the world everyday when you hate the way you look physically. I know that there are so many worse diseases out there that you can have so really I am lucky it is just Cushing’s but that doesn’t always make it easier to get dressed in the morning. Clothes shopping puts me in tears lately and I am about two steps away from shopping in a maternity store. I feel like tweedle dee or dum from Alice in Wonderland or the M&M’s guy. It is so hard to find clothes when your limbs are thin but your middle is so darn round. It’s expensive too! Having to buy new clothes all the time because your weight is spiralling out of control. My dad told me to look at it as though I’m buying these clothes for charity and I’m just borrowing them for awhile. I sure hope he’s right. I’m also slowing down a lot. It is hard to even walk up the stairs to my condo some days and on a Saturday when I don’t actually have to leave the house it is so easy to just sit on the couch and nap because that is all I want to do. Keeping busy with work has really been the way I’ve been keeping active. I had to give up yoga and I wasn’t sure if that was because my gut got in the way because it was so big or the breathing problems I was having. I feel so silly getting out of breath just bending over to tie my shoe or getting up out of a chair. My school has an annual teachers vs students basketball game and I couldn’t play this year because I was embarrassed of what physical exertion does to me and how I look in sweatpants plus the added risk of fractures made it unsafe. I didn’t like facing the questions though. As one of the younger members on staff it must’ve looked suspicious. Again the questions of whether or not I was pregnant. Last week a former parent of one of my students ran into me at the theatre and she asked me when I was due. When I replied that I wasn’t, she said “really?” which just made it worse. I didn’t want her to feel guilty for asking because I do look pregnant but “really?” is not a cool response. I suppose I should take advantage of this while I can and start parking in the expectant mother’s spot at the mall. I need to since its getting harder and harder to even walk. My feet hurt constantly now and I’m limping. I’m assuming its because of the extra weight they are supporting but I googled it and it could be bone fractures. Just another thing to bring up at the doctors next week. I am supposed to meet a friend for a walk tomorrow. I already warned her I’ve slowed down but now I don’t even know if I should be walking much at all. I just want my life back.
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