Coping
Patient and Caregiver Diaries
Patient Diary -- Jenn Lalonde
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Friday, December 30, 2011
Not so merry
Christmas was........ok.
It could have been better but it could have been worse. It sure isn’t what it used to be anymore.
I miss my Grandmother. And I guess I miss being a kid. Like I explained in that one entry where I wrote about my childhood, I had amazing Christmases growing up.
This year, leading up to it was great. Then there was a serious fight, between my mom and I, and my aunt got involved too. Always a great time. I had my bags packed and was about to leave for Conte’s as much as I didn’t want to, I was shaking with rage in this house and had to get out. Thankfully though we patched things up.
Christmas Eve my mom’s side of the family gets together. This year we did an “ugly Christmas sweater theme” and also did a $20 gift exchange. I think that’ll be the last year we even get together at Christmas. It always seems like a great idea, and we used to have fabulous nights of laughter, but now it’s more awkward then anything. That ship has sailed, I’m afraid.
Here, at home was painful. My dad is very sick. He has arthritis in his back and 2 broken (?) discs (I’m not sure entirely all I know is he is ALWAYS in excruciating pain. It’s been about 2 years now, and there is nothing that can be done. So he glues himself to his heating pad and takes a lot of meds. A lot. Watching him makes me die inside and I can’t even write this without crying. He is so sleepy and drugged from the pills and he has a lot of side effects. One of which is not being able to tolerate loud noise and I saw him wincing even as my mom was gathering up the wrapping paper on the ground.
I’m finding it very difficult to face the fact that my parents are getting older. And sick. I don’t know what to do. I want to say, I’d much rather be the sick one then to have to deal with a sick parent , but I am the sick one. I just don’t know what to do..
So it was not an easy Christmas, though I can honestly say I wish it weren’t over. I love Christmas, I just would have done things differently if I could control things and if I had the option to go back.
It’s December 30th and I’m still watching Christmas tv and movies and I don’t want it to end.
Now comes a dreary, long winter...This is the part I hate the most. January and February.
I hope the weather is not too extreme.
Not so merry
Christmas was........ok.
It could have been better but it could have been worse. It sure isn’t what it used to be anymore.
I miss my Grandmother. And I guess I miss being a kid. Like I explained in that one entry where I wrote about my childhood, I had amazing Christmases growing up.
This year, leading up to it was great. Then there was a serious fight, between my mom and I, and my aunt got involved too. Always a great time. I had my bags packed and was about to leave for Conte’s as much as I didn’t want to, I was shaking with rage in this house and had to get out. Thankfully though we patched things up.
Christmas Eve my mom’s side of the family gets together. This year we did an “ugly Christmas sweater theme” and also did a $20 gift exchange. I think that’ll be the last year we even get together at Christmas. It always seems like a great idea, and we used to have fabulous nights of laughter, but now it’s more awkward then anything. That ship has sailed, I’m afraid.
Here, at home was painful. My dad is very sick. He has arthritis in his back and 2 broken (?) discs (I’m not sure entirely all I know is he is ALWAYS in excruciating pain. It’s been about 2 years now, and there is nothing that can be done. So he glues himself to his heating pad and takes a lot of meds. A lot. Watching him makes me die inside and I can’t even write this without crying. He is so sleepy and drugged from the pills and he has a lot of side effects. One of which is not being able to tolerate loud noise and I saw him wincing even as my mom was gathering up the wrapping paper on the ground.
I’m finding it very difficult to face the fact that my parents are getting older. And sick. I don’t know what to do. I want to say, I’d much rather be the sick one then to have to deal with a sick parent , but I am the sick one. I just don’t know what to do..
So it was not an easy Christmas, though I can honestly say I wish it weren’t over. I love Christmas, I just would have done things differently if I could control things and if I had the option to go back.
It’s December 30th and I’m still watching Christmas tv and movies and I don’t want it to end.
Now comes a dreary, long winter...This is the part I hate the most. January and February.
I hope the weather is not too extreme.
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Monday, January 23, 2012
Tick, Tock...
Hmm. Weird day.
It’s been raining for hours. I’m honestly not sure I ever saw rain in January...freezing rain, yes, but temps being +5 and having it pour rain at this time of year is nuts. And dangerous. There is a picture going around of a kid skating WITH SKATES down his ROAD from this morning. Unreal.
Today is the first day in a while that I haven’t had to go anywhere or do anything. I can’t say I’ve been busy (Unfortunately I haven’t) But I’ve just had little things to do I guess. Today I’m sitting on the couch and being online. And watching mind numbing television.
As we all know Bree is in surgery. Sigh.
Today is going to be a long day for many of us. I can’t stop thinking of Ryan. I hate being across the world and not being able to do anything. Hate it. And I know even if I WAS sitting right beside Ry, waiting with him there would still be nothing to do but... wait. But I think I’d feel slightly better if I was closer.
A lot of my day so far has been sitting here, staring blankly out at the trees across the street just thinking about her. About it all. I feel very, very calm about everything. In all of this, I haven’t let a single negative thought enter my head. I have no doubt everything will turn out just fine. Recovery is the hard part.
It all just really makes you think though.
How can a person, from all the way across the world, mean so much to you?
Not even having ever met that girl....she has just impacted pretty much anyone who has ever had the pleasure of having a conversation with her.
These are certainly tense moments here. It’s only been 3 and a half hours so far. It’s definitely going to be a long day.
I honestly can’t think of anything else.
Guess I’ll just continue waiting, like everyone else.
Tick, Tock...
Hmm. Weird day.
It’s been raining for hours. I’m honestly not sure I ever saw rain in January...freezing rain, yes, but temps being +5 and having it pour rain at this time of year is nuts. And dangerous. There is a picture going around of a kid skating WITH SKATES down his ROAD from this morning. Unreal.
Today is the first day in a while that I haven’t had to go anywhere or do anything. I can’t say I’ve been busy (Unfortunately I haven’t) But I’ve just had little things to do I guess. Today I’m sitting on the couch and being online. And watching mind numbing television.
As we all know Bree is in surgery. Sigh.
Today is going to be a long day for many of us. I can’t stop thinking of Ryan. I hate being across the world and not being able to do anything. Hate it. And I know even if I WAS sitting right beside Ry, waiting with him there would still be nothing to do but... wait. But I think I’d feel slightly better if I was closer.
A lot of my day so far has been sitting here, staring blankly out at the trees across the street just thinking about her. About it all. I feel very, very calm about everything. In all of this, I haven’t let a single negative thought enter my head. I have no doubt everything will turn out just fine. Recovery is the hard part.
It all just really makes you think though.
How can a person, from all the way across the world, mean so much to you?
Not even having ever met that girl....she has just impacted pretty much anyone who has ever had the pleasure of having a conversation with her.
These are certainly tense moments here. It’s only been 3 and a half hours so far. It’s definitely going to be a long day.
I honestly can’t think of anything else.
Guess I’ll just continue waiting, like everyone else.
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Monday, February 20, 2012
Poisonous
Is there anything left to write about? I’ve surely said it all, haven’t I?
How awful it is to be in such a depression. How truly fucking wretched. I am stuck in this deep, dark, rut and cannot see any light, whatsoever. I am not sure what more to do about it. You have the people who know everything and try and help you find that light, and when in conversation with them, you get amped and encouraged and feel something on the verge of hopeful.
You speak to your friendly psychiatrist of well over 5 years now, and he assures you, you don’t really need to continue seeing him, you need to take a big giant step out into the big giant scary world and DO something. And while I know that’s true, I am interested in nothing. Discouraged with all. And I go home, into the very house I have lived in since I was only a few months old, into the tiny little blue bedroom that I despise, and shut the door. Get into bed, pull the covers up over my head, and shut it out. I do not know where to go from there. I am unable to take any giant steps. I don’t even know how to fucking crawl yet. I am in hell.
Literally, this world, it just sucks. Fighting..for WHAT? What is the point?
My world ended with this disease back in 2003, or atleast that was the start of the end.
I had it all. And now I have nothing, and I have absolutely no hope for another go.
I had been on the list to get into ‘Cognitive Behavioural Therapy’ for over a year now and actually have went to the first appointment 2 weeks ago. It’s group therapy. Not sure how I feel about that yet. I go back this week for the first session, so I guess I’ll see.
Even though I’m secluded, I still know what’s going on with most people because of facebook. I rather hate that as well, I just can’t stand everyone so happy and cheery. It makes me angry.
Am I jealous?
Possibly.
Yes.
I am fucking upset that I sit here and rot, and you and your fucking husband and kids are out enjoying life.
Yes, I am jealous. I am so fucking jealous I can’t see straight.
Jealous and angry.
Enraged, really.
And while I’m on this rant, can I just mention that I am sooooo fucking sick of one sided friendships? I think I’ve dealt with this all of my life in some ways, but today, at this very moment, there is too much of it going on in my life. I am there, for so many of my friends.. constantly trying to help out, because I have nothing better to do with my fucking time, and well because I honestly give a fuck. Help, help help and I get FUCK ALL in return, not even a “how are you doing?” Only one person on this entire planet truly knows how I am doing . Anyways, I can’t do this anymore. I will be dismissing all these friendships from my life, I just can’t do it anymore. I need someone to lean on too and I don't care how bad a situation those friends are in, I'M in a situation as well and could use a friend. Yet where are they? Certainly not wondering about me. Fuck it. Fuck it, all. I’m done.
I have not been able to write since Bree died. I have not been able to read, either. I have been alone in my head which is not much of a safe place, at all.
I am at a total loss here. I am very, very angry that she is gone.
-And after staring blankly at this page for 20 minutes , I realize I cannot yet speak of this. I had not wanted to write a thing until I could get out a tribute of sorts to my friend, but am frustrated and need to spit fire. I hope to be able to talk about her soon. I miss her...very much. Nothing is the same without her.
Poisonous
Is there anything left to write about? I’ve surely said it all, haven’t I?
How awful it is to be in such a depression. How truly fucking wretched. I am stuck in this deep, dark, rut and cannot see any light, whatsoever. I am not sure what more to do about it. You have the people who know everything and try and help you find that light, and when in conversation with them, you get amped and encouraged and feel something on the verge of hopeful.
You speak to your friendly psychiatrist of well over 5 years now, and he assures you, you don’t really need to continue seeing him, you need to take a big giant step out into the big giant scary world and DO something. And while I know that’s true, I am interested in nothing. Discouraged with all. And I go home, into the very house I have lived in since I was only a few months old, into the tiny little blue bedroom that I despise, and shut the door. Get into bed, pull the covers up over my head, and shut it out. I do not know where to go from there. I am unable to take any giant steps. I don’t even know how to fucking crawl yet. I am in hell.
Literally, this world, it just sucks. Fighting..for WHAT? What is the point?
My world ended with this disease back in 2003, or atleast that was the start of the end.
I had it all. And now I have nothing, and I have absolutely no hope for another go.
I had been on the list to get into ‘Cognitive Behavioural Therapy’ for over a year now and actually have went to the first appointment 2 weeks ago. It’s group therapy. Not sure how I feel about that yet. I go back this week for the first session, so I guess I’ll see.
Even though I’m secluded, I still know what’s going on with most people because of facebook. I rather hate that as well, I just can’t stand everyone so happy and cheery. It makes me angry.
Am I jealous?
Possibly.
Yes.
I am fucking upset that I sit here and rot, and you and your fucking husband and kids are out enjoying life.
Yes, I am jealous. I am so fucking jealous I can’t see straight.
Jealous and angry.
Enraged, really.
And while I’m on this rant, can I just mention that I am sooooo fucking sick of one sided friendships? I think I’ve dealt with this all of my life in some ways, but today, at this very moment, there is too much of it going on in my life. I am there, for so many of my friends.. constantly trying to help out, because I have nothing better to do with my fucking time, and well because I honestly give a fuck. Help, help help and I get FUCK ALL in return, not even a “how are you doing?” Only one person on this entire planet truly knows how I am doing . Anyways, I can’t do this anymore. I will be dismissing all these friendships from my life, I just can’t do it anymore. I need someone to lean on too and I don't care how bad a situation those friends are in, I'M in a situation as well and could use a friend. Yet where are they? Certainly not wondering about me. Fuck it. Fuck it, all. I’m done.
I have not been able to write since Bree died. I have not been able to read, either. I have been alone in my head which is not much of a safe place, at all.
I am at a total loss here. I am very, very angry that she is gone.
-And after staring blankly at this page for 20 minutes , I realize I cannot yet speak of this. I had not wanted to write a thing until I could get out a tribute of sorts to my friend, but am frustrated and need to spit fire. I hope to be able to talk about her soon. I miss her...very much. Nothing is the same without her.
Although I have honestly been thinking that anywhere is better then here. -
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Sunday, March 18, 2012
Just Breathe
The world lost a great soul 3 weeks ago.
A personal friend, Mike Gilbert, passed away Friday Feb. 24th after a long battle with cancer.
Mike was a true fighter, right til the end.
I have never in my entire life met anyone like him. He was truly, truly amazing. Powerfully strong, upbeat, happy, never without a smile on his face, even at his sickest. So positive, truly living life to the fullest. I wish I could be more like Mike.
We had always had a special bond, especially after he got diagnosed with cancer, because we shared a lot of the same stuff where as we were both fighting a crappy disease. Ironically, his cousin Angela, had PH and died after her transplant. When I was diagnosed, his family gave me several thousand dollars from her trust fund, Angela’s Wings. Read very last entry on this page
He and his entire family are just simply amazing people.
I am still shocked that he is actually gone from this world, I didn’t think it would come to this so soon. He is sorely missed by hundreds. <3
Bree. My lovely, Bree. Gone as well.
I am still unable to get my head around this completely, I feel lost in a lot of ways.
I feel as if she is just on some holiday, or just taking one of her many internet breaks.
It’s difficult for me because, where is the closure? There is none. I left Bree by telling her not to worry about her surgery, everything would be just fine.
I had been writing her a letter, every day through-out her surgery and there is no closure there, either. It took me atleast a month until I could even close the Word tab that I was writing in.
I miss my friend. Her sarcasm, her beautiful writing, having a friend that actually cared about me enough to demand me tell her how I was doing every time we spoke. I don't have anyone like Brigitte. I miss her, so much.
<3
Both Mike and Bree shared the same brilliant, blue eyes. The pictures I posted of them are my favourite picture of each of them, they just happen to be masking their gorgeous eyes by shades.
Mike picked this song for his own funeral. I share it here, because it's just beautiful.
Just Breathe.
Just Breathe
The world lost a great soul 3 weeks ago.
A personal friend, Mike Gilbert, passed away Friday Feb. 24th after a long battle with cancer.
Mike was a true fighter, right til the end.
I have never in my entire life met anyone like him. He was truly, truly amazing. Powerfully strong, upbeat, happy, never without a smile on his face, even at his sickest. So positive, truly living life to the fullest. I wish I could be more like Mike.
We had always had a special bond, especially after he got diagnosed with cancer, because we shared a lot of the same stuff where as we were both fighting a crappy disease. Ironically, his cousin Angela, had PH and died after her transplant. When I was diagnosed, his family gave me several thousand dollars from her trust fund, Angela’s Wings. Read very last entry on this page
He and his entire family are just simply amazing people.
I am still shocked that he is actually gone from this world, I didn’t think it would come to this so soon. He is sorely missed by hundreds. <3
Rest in Peace, Mike. xo
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Bree. My lovely, Bree. Gone as well.
I am still unable to get my head around this completely, I feel lost in a lot of ways.
I feel as if she is just on some holiday, or just taking one of her many internet breaks.
It’s difficult for me because, where is the closure? There is none. I left Bree by telling her not to worry about her surgery, everything would be just fine.
I had been writing her a letter, every day through-out her surgery and there is no closure there, either. It took me atleast a month until I could even close the Word tab that I was writing in.
I miss my friend. Her sarcasm, her beautiful writing, having a friend that actually cared about me enough to demand me tell her how I was doing every time we spoke. I don't have anyone like Brigitte. I miss her, so much.
<3
Rest in peace my dear Bree..I love you.
The only peace I have for my two friends, is that there is no more suffering. No more suffering.
Both Mike and Bree shared the same brilliant, blue eyes. The pictures I posted of them are my favourite picture of each of them, they just happen to be masking their gorgeous eyes by shades.
Mike picked this song for his own funeral. I share it here, because it's just beautiful.
Just Breathe.
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