I'm very emotional right now. It's been a pretty lax day, it's been rainy and gray out and I had a good nap after doing my I.V. meds and watching an episode of Sons of Anarchy with Jeff. I had an awesome diner of ham and scalloped potatoes with Mom, Dan and Jeff. Afterwards, mom and I sat down for a competitive match of good ol' scrabble. Because I tend to take an extra long amount of time to put down my chips, mom was perusing through facebook when she came upon a couple posts from fellow CFer friends about a girl who is not doing so well. Now I have never met her but I came upon her blog about a month ago and have been going through her many blogs dating back from 2007 when she was pre-lung transplant up to the present. Her last post was near the end of February though and I have been wondering how she is doing as she was dealing with some complications according to her posts. I said awhile ago that lately I've been feeling kinda numb and that it's been hard for me to even feel anything... but tonight I feel a lot! I starting crying for this poor girl who is laying in a hospital bed right now probably terrified, tired and frustrated. I don't want her to feel that way. I don't want ANYONE to feel that way. So the tears starting flowing. I want to help. I want her pain to go away. I put myself in her shoes and I don't think I could stay strong. Yet she is managing to find strength and I pray that she keeps finding it. This cry felt like a long time coming and I just couldn't stop the tears once they started. I cried for her, for her family and for others who may be going through rough times too. I also cried for each and every member of my family and friends who may one day have to feel pain if something bad happens to me. If I don't make it they are going be left dealing with the grief and I don't want that. I love them so much!!
I went into the hospital on Tuesday of last week because I was starting to notice myself become short of breath more easily so I decided to be proactive and get my butt into the hospital to get checked out (okay my mom made me... but I agreed). I stayed there until Saturday. They put me on Meropenem and Amakacin. I've never been on Amakacin before but Meropenem I'm on a lot. They usually pair it with Tobramycin but I'm actually immune to it (or at least the one strain of pseudo is). The first couple days I didn't even want visitors. I literally just wanted to read and sleep. I also felt pretty sick to the stomach which is common for me. After my little retreat though I welcomed my visitors. My husband and mom made sure I was well nourished and not bored. Dan kept the jokes coming to lighten the mood. My aunt and uncle and cousins made me feel special by making the time to see me and my dad made the trip up from Sudbury and even though he hates hospitals he came a few times with my sister, mom and Jeff. Thanks to everyone who put on the funny penguin suits to brighten my day. It's the small gestures that makes such a big difference. I notice the big and the small and I appreciate them all. Support is the only thing that keeps me going.
Love life live
Carla :)
Monday, April 25, 2011
Thursday, April 7, 2011
On My Couch With My Therablogs
Okay so today was a day like any other. Get up after sleeping 12 hours and stay in my P.J.s all day. It was really nice outside and there were plenty signs that spring is here. Yah!! I can't wait for summer to sit outside in the warm sun and enjoy a cold drink while reading a good book. Oh I love that.
I really wanted to talk about how I've been feeling emotionally lately. I have to say that I've had a hard time adjusting to my new quality of life and to the fact that I can't work anymore or do a whole lot physically. For a few days though, I have been feeling quite better. It may be the 'happy pills' I'm on but as long as I feel better it doesn't really matter why I suppose. I have also been quite the stalker on several CF blogs, some belonging to people that I do not know, because it brings me a lot of comfort. I'm not glad that other people have Cf, I am only glad that we at least have a venue to which we can share our different perspectives on, very often, the same events. I'm left smiling, nodding in agreement, crying and even laughing hysterically. I have so much respect for the truth that is shared and the support that we give and receive. I honestly think that these blogs are as therapeutic as any therapist out there. My feelings are often validated and it makes facing this challenge that much easier knowing that others have faced it before I have and are winning the fight or that I'm holding hands, so to speak, with friends as we enter the ring together. Even the loses have their place as their strength shows they did not go in vain.
I guess I've definitely come to terms with this disease. When I was little I didn't even want people to talk about CF around me. I wanted nothing to do with CF. Only a select few of my friends knew I had anything wrong with me and they vowed never to tell a soul and they kept that promise. In grade school, it was my biggest fear that people knew I was different. I was approached to have a speaker come to my school to teach others about the disease and help spread the word about such an unknown affliction to young children and adults but I refused because I was ashamed. I can't remember if I stopped them from coming at all or if I just made them promise not to point me out. When I was about 12 years old I started coughing a lot in class and I can remember the small beads of sweat that would seep from forehead and armpits when the classroom would be silent, watching the seconds hand on clock tick away, all the while praying for the coughing to stop or for us to be able to talk so the noise would cover my hacking, disgusting cough. If you've ever tried to stifle a cough you'll know that it only tickles the back of your throat that much more. It was horrible. At clinic I would avoid eye contact with other Cfers because I didn't want to be a part of this group. That was then and it really saddens me to think that I was so afraid to accept myself. As I grew up I became more assured of myself and I didn't let it bother me so much. I would tell people without caring what they thought but I still pushed it to the back of my mind and tried to live as 'normally' as I could. Now that I'm much sicker I've really had to face this disease head on. I had lost the Hide and Seek game, it had found me. Not only do I have to accept things but my family, friends and husband do too. I've come a long way and now I seek the friendship of other Cfers when I need it most. Yah to technology that allows us to communicate and support each other. I guess at the end of it all I'm just more at peace with everything. I live with by the mantra 'Everything happens for a reason' so I'm just trying to enjoy the small joys in my day and that's all I can do. I have LOTS of love so I'm really lucky.
I seem to be getting stronger at physio which is a plus. Hopefully I stay this way!
Good night to you all
Carla :)
I really wanted to talk about how I've been feeling emotionally lately. I have to say that I've had a hard time adjusting to my new quality of life and to the fact that I can't work anymore or do a whole lot physically. For a few days though, I have been feeling quite better. It may be the 'happy pills' I'm on but as long as I feel better it doesn't really matter why I suppose. I have also been quite the stalker on several CF blogs, some belonging to people that I do not know, because it brings me a lot of comfort. I'm not glad that other people have Cf, I am only glad that we at least have a venue to which we can share our different perspectives on, very often, the same events. I'm left smiling, nodding in agreement, crying and even laughing hysterically. I have so much respect for the truth that is shared and the support that we give and receive. I honestly think that these blogs are as therapeutic as any therapist out there. My feelings are often validated and it makes facing this challenge that much easier knowing that others have faced it before I have and are winning the fight or that I'm holding hands, so to speak, with friends as we enter the ring together. Even the loses have their place as their strength shows they did not go in vain.
I guess I've definitely come to terms with this disease. When I was little I didn't even want people to talk about CF around me. I wanted nothing to do with CF. Only a select few of my friends knew I had anything wrong with me and they vowed never to tell a soul and they kept that promise. In grade school, it was my biggest fear that people knew I was different. I was approached to have a speaker come to my school to teach others about the disease and help spread the word about such an unknown affliction to young children and adults but I refused because I was ashamed. I can't remember if I stopped them from coming at all or if I just made them promise not to point me out. When I was about 12 years old I started coughing a lot in class and I can remember the small beads of sweat that would seep from forehead and armpits when the classroom would be silent, watching the seconds hand on clock tick away, all the while praying for the coughing to stop or for us to be able to talk so the noise would cover my hacking, disgusting cough. If you've ever tried to stifle a cough you'll know that it only tickles the back of your throat that much more. It was horrible. At clinic I would avoid eye contact with other Cfers because I didn't want to be a part of this group. That was then and it really saddens me to think that I was so afraid to accept myself. As I grew up I became more assured of myself and I didn't let it bother me so much. I would tell people without caring what they thought but I still pushed it to the back of my mind and tried to live as 'normally' as I could. Now that I'm much sicker I've really had to face this disease head on. I had lost the Hide and Seek game, it had found me. Not only do I have to accept things but my family, friends and husband do too. I've come a long way and now I seek the friendship of other Cfers when I need it most. Yah to technology that allows us to communicate and support each other. I guess at the end of it all I'm just more at peace with everything. I live with by the mantra 'Everything happens for a reason' so I'm just trying to enjoy the small joys in my day and that's all I can do. I have LOTS of love so I'm really lucky.
I seem to be getting stronger at physio which is a plus. Hopefully I stay this way!
Good night to you all
Carla :)
Sunday, April 3, 2011
A Hero, I Am Not
So it's been a week since the dry run and not too much has happened. We are still patiently waiting but instead of tucking the idea of being called neatly away in the back of our minds with the assumption that it will be months until we hear from them, it is now sitting ever so dominantly at the forefront of our everyday lives. In the words of my brother-in-law Dave, "Shit just got real!". Now I know it's probably going to be soon and I'm pretty damn scared to say the least. I know I'm in competent hands, some of the best in the world actually, but the whole process just seems so exhausting and hard! Yes I realize I sound a little like a lazy wiener but come on folks, this isn't a run of the mill surgery where they stitch you up and send you on your way to heal for a couple weeks. No, no, this is a 'Say goodbye to your old self because a new one is on its way' kind of surgery. I say 'self' because it will not only be lungs that are changed out in all of this. This will no doubt be a life changer, for the good and for the bad. Now don't get me wrong here I'm not only referring to negative changes, I hope there will be WAY more good than bad, but as many you might know I am a worrier and I tend to zero in on the things that I dread happening. Some of these things are very real and valid reasons to worry such as: waking up with the breathing tube, the pain, death, rejection, cancer, etc. (I hate using etc at the end of this because it makes the list and what is on it seem trivial but frankly I just can't name them all at this ungodly hour but you get the point) Other things I worry about are, yes I'll admit it, just plain vain. [And then you hear the audience gasp in shock as the truth is revealed behind their beloved and seemingly strong CF patient/soon to be transplant recipient. Could it be she's actually.....ughhh...HUMAN!!} I worry about the effects of all the meds, particularly prednisone. I've never been on it and I worry about gaining tons of weight, getting bad acne or having hair grow where it's never grown before. I hate when people roll their eyes at this. Now I'm not saying these worries have the same weight as the ones I mentioned earlier and I know they are things I CAN deal with, I just don't WANT to have to. Plain and simple. There is so much shit I have to deal with and I will have to deal with that I just don't want those things added on the list of shitty things. I know I'm going to get some comments about how I need to just appreciate the new lease on life. I get that. I do appreciate, trust me, I'm just getting it off my chest. I can't be the only one. Enough about that though. I wanted to just let everyone know how I've been feeling lately because the number one single question I get asked is "How are you feeling?" by genuinely inquisitive friends and family and I love you for it. I just got off IV meds a week ago and I haven't felt too bad. Fingers crossed that it lasts. I've even been able to do extra weights and faster pace at physio. That could be because Jeff, a.k.a 'The Tyrant', makes me though. Hahaha. Anyways, I'll continue to keep you all posted.
Carla :)
Carla :)
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