Coping
Patient and Caregiver Diaries
Patient Diary -- Jenn Lalonde
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untitled
Had the appointment with my psychiatrist earlier this week... I hadn't seen him since before I got sick, so we had a lot to discuss. I've only been to him, probably 7 or 8 times. A couple of times, I cried the entire appt. Then the new anti depressants he put me on started working, and I stopped crying. Then I got sick. But the last couple of times I seen this doctor, it was like talking to an old friend. He's very nice, and we really just talked... That's how it went the other day too. I completely thought I would break down, because I was going to be talking to him about the lung transplant assessment.
During the assessment, when I spoke with the coordinator and the social worker, I held my tears back so much. So I really thought I would let them loose with Dr. C, but it didn't happen. Not even close.
And at the end of the appt, he asked me what I wanted to do with psychiatry. He told me I could come back anytime I needed or wanted to, but that he didn't think I had any "mental" issues. That's probably the wrong word, but I cannot think of the "right" word at the moment.
Anyways I guess that's a good thing. But, I want to know why I don't agree...
I feel so completely messed up most days, I just don't know what is wrong with me.
I am however still going to be starting my cognitive behaviour therapy soon, so maybe thats all I need. I'll see...
Yesterday, I went for an EMG test. It was kind of cool really, they shock your arm, to read the nerves or whatever. Felt neat. Then after a bit though, it started hurting only because my arm was getting sore. The second part of the test, a doctor came in and placed needles into my arm for whatever reason.. He seen a scar on my arm and asked me what it was from. I was a bit thrown aback because............well it was a self inflicted scar from when I was a stupid teenager. So I didn't know what to say, so I quickly lied and told him it was from a branch....from a loooong time ago. Was a bit of a weird situation..
Anyways, I do have nerve damage. Radial Neuropathy, like I have mentioned before.
I asked "whats nexT" and he just told me to go to my family doctor. Ugh. So I guess I will just keep going on like I have been here, popping tylenol 3's every couple of hours, and wearing a wrist brace.
I hope my doctor sends me to a neurologist.
The pain I have been experiencing, not from the rn, but I guess from the flolan, is unreal. I walk around my house literally like I am 80 years old. It hurts sooooo bad. Everything hurts. My hands, my arms, legs, feet.. it's awful. I can hardly get up off the couch when I sit down. Walking around here is so painful, I look like a complete idiot, because I really cant walk on my feet so sometimes I just kind of glide around on my socks, or I walk around like a zombie.
I will be asking Dr Mehta for something stronger then Tylenol 3's. At first I didnt want to but now I just dont care. It's gotten worse. I do not know how people live in chronic pain....cause I sure as hell can't do it.
There is something going on with my neck.. It is SO itchy all the time for the past 2 days, I dont know why! And so I have big red scratch marks on it. Its getting bad... There is always something with me...........always.
I have a rash starting around my site again.... I'm not sure what to do about that either. I might call my nurse. The last time, I switched to a gauze dressing until it went away, I'll probably do that. Ugh. Why so many medical issues always?
To some of my friends I feel like I sound like I'm always complaining. Cause I'll tell them "yeah I have a rash around my site............." Who the HELL wants to hear about that? Its not ALL I have to talk about, but medical issues are a BIG part of my life. I fucken hate it.
Halloween is coming. I'm kind of excited but I don't even know why, cause I won't be doing anything. Or maybe I'll get plans at the last minute, but who knows... And then November.... When I woke up this morning, there was snow on the ground. Snow! I was shocked. Winter is coming...............
Brr!! Atleast I have owl mitts. 
nothing.
I am currently sitting on my couch, in the dark. Lately, I feel like being in the dark all the time. Not even sure why really, I don't feel "depressed" these days...... I sort of feel something else, but I can't really describe it. I don't feel like talking to anyone..........my family is annoying me, I just feel like being alone. Well, Charly can stay. And Wes, well he is back in new york again... I feel bad. He hasn't been home in what seems like ages.
I want to skip christmas. Seriously. I know I'll feel better about it when it gets closer... I think I always get annoyed with christmas at this time of year. They are already playing christmas music in the stores and all the decorations are already up. To me, that's maddening. And it makes me feel very bitter towards the holiday. I'll see what happens but really, I just can't stand even thinking about it yet.
I had an appt. with the specialist yesterday. It did NOT go well. I mean, nothing bad happened, but it just didn't go as I had planned it to. Completely bombed my 6minute walk.... I basically just stood there, waiting for the time to pass. It was a bad day all around. I'm not sure why I was so out of breath, but I was. And I didn't care, I fucken hate those walks more then anything. Then up to see the Dr. and all around he is feeling good about everything. My last echo showed that my heart isn't as enlarged as it was, and my pressures are down to 60. I told him about the pain and he prescribed me Prednisone. I really just sat there at my appt, not really talking.....and now that I think of it, is that not a steroid? Does it not make hair grow on faceS? I think so. Well fuck THAT. I'll deal with the pain then. Makes me want to cry all these medications and side effects, im fucking sick of it.
Sorry about the swearing. I feel myself getting angrier and angrier just writing that last paragraph. I just want illness to be gone. I'm at the point where I started feeling good again, and I want to forget about it. That's exactly what I do, too, dismiss it from my thoughts.
I had an appt today with that lady about cognitive behaviour therapy. I cancelled cause I was feeling really badly last night. Thought I had caught the swine flu. Today, I slept in until 450pm. Sick, I know, but I feel very worn out. I'm tired still. I'm late with mixing my flolan, I have to do that as soon as I'm done here.
This entry did not go as planned, either. There was other stuff I wanted to write about, or there was stuff I did write about buT I didnt write it how I wanted to... but its too late now, I have to go.
stuffs.
Im here basically to bitch for a few minutes........I think.
Im annoyed.......as usual.
It truly doesnt take much, but what-the-fuck-ever. Ive been on the phone, for the past hour, listening to a busy signal, trying to get ahold of my doctor. The man is extremely busy.. not only is he a family doctor, but he's also a coroner......so he gets called out of the office, quite often. I have been there, more then once, and waited the full hour, only to be told, "he has left the building...lets reschedule" The last time this happened to me, I was lucky enough to have been late for his appt, while at ANOTHER appt, so I frantically called to let them know, and they let me know he was just about to leave anyways, so not to show up. Sometimes, for whatever reason, I sit there, in silence, even though I have a lot to say afterwards. This always causes me shit cause when I rescheduled.....she didnt reschedule me until December. I should have, and do not know why I didnt, say anything then, but thats just not good enough, and I'm going to run out of pills and need to see him sooner then that. So Ive been trying to get ahold of them, but of course, now the office is closed. Piss me off.
I have not been taking care of myself, the way I should. I do not do monthly bloodwork, I do not take pills on time, I do not take some of my pills at all..I do not exersize, I do not eat right. I know this is all important. But I just find it sooooo hard to even PRETEND to give a shit. Lately, I've found myself becoming more and more depressed and shutting people out.....but again...............do not care. I dont answer my phone. I dont go get the door if someone comes here. I dont want to see anybody, at all.
I'm still so mad at my PH doctor. The way he laughed at me when I suggested coming back in Feb. wtf. Gimme a break. Lemme alone.
I've decided I will not take the prednisone. I havent done any research so to say, im only going by what I already know. I did want something to help me to be in such pain, but Ill handle it on my own. I dont want more pills. I dont want more side effects. And am i vain if I dont want a hairy face? No, i certaintaly am fucking not. I wanna tell them to kiss my ass when they call to see how im doing in a week. Maybe ill start ignoring his phone calls, too. Hell, I should ignore my doctors phone calls and take the ones from my friends.
Yesterday, I layed in bed alllllllllllllllllllllllll day with killer period cramps. Havent had to deal with those in a long time, so I dunno what was up with that. I couldnt find my regular tylenol, so I tried some t3's but even they werent helping. I am happy to say, the cramps are gone. :) Thank jesus. ThAT shit is hell I tell you. Hell.
My side effects from flolan has seemed to have shifted a bit...........Jaw/face pain is back somethin fierce.........and im itchy to the point of almost tearing off my skin. I think im gonna take sme benedryl in a sec actually........I hardly slept last night cause of that. Just scratching myself raw. It's insane.
I think I need to go see my grandfather. He always makes me feel better. He doesnt know that. Maybe I'll tell him. He is such an amazing man, so positive.......but in a good way. Some positive people I'd like to punch in the face, but him, he is greatful for every thing. I could listen to him talk, for ever I think. Maybe he will break me out of this depression. Maybe.
<3
a little piece of blue
My sister's keeper, was the saddest movie Ive ever watched, in my entire life.
You know how usually books are way better then movies all the time? Yeah, well this wasn't the case with this one.
My eyes hurt and I'm feeling quite empty after watching it.
Damn.
...
bleak.
I lost the cipralex. And I need it, bad. I've been off of it for several weeks.........actually its been months since Ive been able to take that pill regularly. Not sure whats wrong with me, because its probably the one I need most. I will have to do some serious hunting soon, because I feel black clouds moving in, rapidly.
I want to get outta here, so bad, but I cant go anywhere.
And winters coming, which makes everything even worse. Hibernation time.
But i dont want that. I want to spree. Now.
Am holding back tears constantly these days..... Id love to turn off my brain. Want to be numb. Has something in the way.
http://www.youtube.com/watch?v=ukk9QUH6ahg
sometimes i cant stop listening to it. today is one of those days.
nothing can even fix this. and i'll probably just let it get worse.
yeah.
untitled again
I've been awake for hours, but just now made it out of bed. I have the tv on that ridiculous fireplace, with christmas music... Not really sure why, but it's kinda nice. The only reason I got out of bed was because I wanted to see my christmas lights and my fireplace, so now I'm on my couch - where I plan on staying for the rest of the day/night.
I'm kind of more christmasy....my house is decorated and stuff, but I still have not shopped, nor do I want to or care. Well, wes and I bought new couches and said that was our gift to each other, but that was needed. I don't know if I will buy gifts. I mean, I probabaly will because I'll feel like an ass if I don't but, I soooo don't have the time in my brain to even put any thought into it.
I feel sick today...which I guess is why I stayed in bed all day. Nauseous right now, maybe I'll take some gravol. And just depressed, but this is normal. I think I'm actually gonna set up another appt with my psychiatrist.
I am skinny. It is not even cool. I honestly hardly eat at all, ever. If I can get down a few bites of food in a day, well that's a good thing. None of my clothes fit me. I have no boobs and my ass is gone, I'm completely disgusted with myself. My normal weight has been around 145lbs. I have weighed that most of my adult life. Then about three years ago, I put on about 10lbs that I could never seen to get rid of. When I went into the hospital in May of this year, I was at my biggest ever, 178lbs i think it was, but it was a lot of water weight. Right now I weight 130. The only time I've been this small was in 2003 when I first got sick, but I didn't stay this small for long. I want my curves back soooo bad, but it is so hard to eat when you dont feel hungry or nausous. Its the flolan. I remember being shocked at the "anorexia" side effect. I cannot say I am anorexic but I really have to be careful with this, I am scared.
There is snow on the ground. I think its' here to stay. I like snow, but only at first. It gets old fast. I think I will have a very hard time this winter, as I'm always freezing cold. I suppose I like this weather more then I would a hot sunny day right now, considering the mood and all. And I do really love christmas.
This saturday, my oldest friend Lisa is coming to hang out here. When we were kids, every single christmas we would have a "sleep-over" and watch the annual christmas telethon. It was our ritual...even thought It's completely RIDICULOUS, but we liked to see if we knew anybody (Which we always did) and we liked to make fun of everything that was going on. It was awesome. So we kind of just re-connected after about 10 years of not speaking, and we have been trying to make plans. She suggested this plan, as she has still not seen my house or met my Charly. So I'm really looking forward to that, I know we will have fun. :)
diseased all over
its not a good time to be writing, but i cannot think of anything else to do.
i havent gotten outta bed today, and do not plan on it.
im severely depressed. and im in a lot of pain. its not even the flolan pain right now, i dont know what its from. my left arm lost alot of ability to do things as soon as i had my hickman installed, and that is whats bothering me. ..well more my shoulder i guess. its been bothering me for 3 or 4 days now. it really sucks.
i cant see the good in anything today.
i just want to be happy.
its so awful being so fucking depressed.
ph really gets to me and for the past couple of days ive been crying over it, a lot. so down......so so down.
im so skinny. my breasts have vanished. i used to be a 36C. im not flat, but what i do have, is far from being pretty. i was at my hair appt last night and my hair dresser was telling me how she was going to get a boob job in january. i would love one. then, after thinking about that some more, even if i could get one, well i couldnt because i have ph. and im on flolan. and that thought just like every other thought, brought me down lower.
i know you should try and be happy and look at the bright side of things. but i cant.
for as long as ive had this disease ive been so depressed. its ruined my life. depression is so hard.
i dont think i will ever be happy. and im jealous of everybody. i literally hate my life.
i would appreciate it, if nobody commented on this entry, as this is all very horrible, and i am aware of this. i would have made it private, but you cant do that anymore.
sorry.
counting down the days..
Christmas has come and gone, yet again.
I'm glad it's over. It was great while it lasted, but I have never been so happy for a holiday to end.
Now, I'm just trying to get past the next few days and survive that. I cant wait to start a new year, but I'm dreading new years eve like crazy. I want to be alone but I think I am being drug out to Mikes camp.
I dont know.
Cant wait til its over.
Cant wait til a lot of things are over actually.
Im basically just writing right now, to get my last entry out of existance. Or out of the main page of the diaries anyways.
Happy new year..
January 19th 2010
I started taking warfarin, revatio and cipralex again.
i dont have a calendar and i need to write this shit somewhere.
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