An account of my journey with peg-interferon/ribavirin treatment for Hepatitis C.
Showing posts with label last. Show all posts
Showing posts with label last. Show all posts
Friday, January 20, 2012
It's been 344 days, thank god it's finally OVER!
From the first interferon shot to the final ribavirin pills I took tonight, treatment has lasted a total of 344 days!! A medical treatment full of harsh drugs, harsh side effects, and a lot of physical and emotional pain. That's 48 shots and 1,720 pills. Not to mention the daily anti-depressents, heartburn medication, endless amounts of ibuprofen or aleve and any other supplements such as multivitamins, iron pills, etc. The most trying eleven months of my entire life, hands down. I can't believe it's over!! I blood work done and see my specialist on Monday at 3pm. Assuming he tells me my results still look good I won't see him again for approximately 6 months. what a life changing event that is taking place. When I wake up in the morning I no longer have to think about treatment. I have to remember to ask the doctor how quickly he thinks the fatigue will start to subside if there is one side effect that has kicked my ass more than any that would be it. I would love to get on a regular sleeping schedule, go to the gym regularly and be able to work again! I look forward to returning to some form of normal life within the next couple of weeks to a month. On that note I can barely keep my eyes open and my body is sore and tired so I'm headed to bed... more after the doctor's visit on Monday!
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Saturday, January 14, 2012
My Final Shot
Around 11:30pm 1/13/20012 I took what will hopefully be my last interferon shot, EVER! It's funny to me how easy it is to give myself shots now however eleven months ago I was more scared of giving myself a shot than the side effects. Of course I can see the underlying fear of not knowing what was going to happen probably played into that more than I realized at the time, but still.
Now the fear becomes going back into the real world. On the last day of treatment (Jan 20th) I will have been out of work exactly seven months. That is a trip! I feel so incapable of working it's bizarre! I'm doing my best to stay positive and remember that as my energy returns reentering the working world will not feel as difficult as I'm making it in my head. Today if I were to try to work a full eight hours I would die, been there, done that, we know this. Hopefully in a few weeks that will no longer be the case. I'm also excited to get back to the gym and hopefully have an appetite again which will help me eat more regularly. I have a new lease on life and I intend to use it to the fullest!
I still intend to update this blog at least for a little while to document how quickly side effects leave, or if they stick around, etc... While I won't have a truly clean bill of health for six more months I cannot express how excited I am to have the chapter of treatment over with. I don't take any of this for granted, I do know how blessed I am to have the chance to get well, but goddamn after the stress of nausea, fatigue, and muscle aches on top of all the insurance/work bullshit I've had to deal with over the last year I am very happy to move on to the next adventure!
Now the fear becomes going back into the real world. On the last day of treatment (Jan 20th) I will have been out of work exactly seven months. That is a trip! I feel so incapable of working it's bizarre! I'm doing my best to stay positive and remember that as my energy returns reentering the working world will not feel as difficult as I'm making it in my head. Today if I were to try to work a full eight hours I would die, been there, done that, we know this. Hopefully in a few weeks that will no longer be the case. I'm also excited to get back to the gym and hopefully have an appetite again which will help me eat more regularly. I have a new lease on life and I intend to use it to the fullest!
I still intend to update this blog at least for a little while to document how quickly side effects leave, or if they stick around, etc... While I won't have a truly clean bill of health for six more months I cannot express how excited I am to have the chapter of treatment over with. I don't take any of this for granted, I do know how blessed I am to have the chance to get well, but goddamn after the stress of nausea, fatigue, and muscle aches on top of all the insurance/work bullshit I've had to deal with over the last year I am very happy to move on to the next adventure!
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Friday, January 6, 2012
Only one more to go!!!
About a half hour ago I took my second to last shot. I can't even believe it. Crazy! The first month gave me so much anxiety. I hate needles, I still do, but back then I would work myself into such a panic and have a complete melt down before I even gave myself the shot. It was hell!! I don't know that it was the needles so much as knowing the side effects were coming. They were so intense especially at first. Now it seems so common place that I'm not even sure what I'll do with myself when I start feeling better. I'm so excited but almost don't believe it'll happen. It's a weird emotional and psychological place to be in I'll tell you that much!
I experienced a bit of nausea today. It was pretty bad however it didn't last but a couple of hours so that was good. When it comes to this stuff I have learned to turn it into a positive as quickly as possible! I'm still super exhausted. I walked a good two miles today, maybe slightly more to run some errands. I intended to catch the bus but I kept missing it by mere seconds and it was so wet and cold out I figured I'd fare better walking than sitting at a bus stop. Not so sure about that now. I came home and slept for two hours just to wake up feeling sick. I chatted with a few friends online, contemplated cleaning my house but just zoned out instead before taking my shot. Now it's time to call it a night (yet again) and hopefully have enough motivation to get some house work done in the morning. Having zero energy sucks!! Thank god this won't last too much longer!!
I experienced a bit of nausea today. It was pretty bad however it didn't last but a couple of hours so that was good. When it comes to this stuff I have learned to turn it into a positive as quickly as possible! I'm still super exhausted. I walked a good two miles today, maybe slightly more to run some errands. I intended to catch the bus but I kept missing it by mere seconds and it was so wet and cold out I figured I'd fare better walking than sitting at a bus stop. Not so sure about that now. I came home and slept for two hours just to wake up feeling sick. I chatted with a few friends online, contemplated cleaning my house but just zoned out instead before taking my shot. Now it's time to call it a night (yet again) and hopefully have enough motivation to get some house work done in the morning. Having zero energy sucks!! Thank god this won't last too much longer!!
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Wednesday, December 14, 2011
Oh, right... nausea.
So here I just said about ten days ago that the nausea had been gone for awhile. It stayed away until about three days ago when I started feeling much worse and it has more or less stayed for now. Watching what I eat, drinking ginger tea and taking all the required supplements in the world don't seem to be making a damn bit of difference right now either. The positive side? At least I'm not struggling with this at work! I remember how horrible the nausea was during the four months I was still working and I seriously wanted to die. I was so unable to focus, afraid to eat or even talk at times. Since being on leave I've fully learned how to truly take it easy and relax which has made this whole process so much better! Definitely something I couldn't have accomplished had I stayed working!
I've also been able to nap a lot easier these days so I don't feel as sleep deprived as I have in the past. It still comes in waves and most nights I'm not sleeping very well at all actually, but at least my naps (about 3 hours on average) are pretty solid and help keep those zombie-like states I was so often in to a minimum!
Right now it is almost midnight, my stomach is in knots, and my body is tired and sore. My mind is pretty damn awake and I have no true desire to attempt sleep though my eyes feel a little heavy. So yeah, there are still days (like today) that it sucks to be alive but I know the end result is totally worth it! Just a little over a month to go!!
I've also been able to nap a lot easier these days so I don't feel as sleep deprived as I have in the past. It still comes in waves and most nights I'm not sleeping very well at all actually, but at least my naps (about 3 hours on average) are pretty solid and help keep those zombie-like states I was so often in to a minimum!
Right now it is almost midnight, my stomach is in knots, and my body is tired and sore. My mind is pretty damn awake and I have no true desire to attempt sleep though my eyes feel a little heavy. So yeah, there are still days (like today) that it sucks to be alive but I know the end result is totally worth it! Just a little over a month to go!!
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Monday, December 5, 2011
I don't like Mondays
As you all know I take my shot on Friday nights. It takes a couple of days to really affect me and yet I am always somewhat surprised at how out of it I feel come Monday. I slept for about nine hours last night, took a two hour nap and am thinking about going back to bed again after only being awake for a total of eight hours today. Wow it's weird to feel like this, I don't really know how to put it into words.
The nausea has not bothered me for at least a week which is a huge blessing! Still dealing with extremely sore muscles, body aches and fatigue but what the hell, I'll take it! My skin has been acting up a bit again but I think that is mostly due to the cold ass weather we've been having! I'm trying to be as careful as I can though as the skin problems I had early on in treatment felt very devastating and I don't want to go through that again!!
My sleep has been all over the place lately so I think it's a good thing that I'm actually tired. There was at least a week where I would not sleep more than four hours a night, had super vivid dreams to the point of feeling like I hadn't slept at all and yet was completely unable to nap during the day. If I was lucky enough to fall asleep it was not restful and made me feel worse upon awakening.
The good news? My long term disability was finally approved through the end of treatment!!!! I need to call my case manager tomorrow (sorry dude, I've been busy sleepin') and double check that everything is in order but as far as I know we're good to go!! Yay!!! What a huge relief given all the bullshit I've been put through since June!
The nausea has not bothered me for at least a week which is a huge blessing! Still dealing with extremely sore muscles, body aches and fatigue but what the hell, I'll take it! My skin has been acting up a bit again but I think that is mostly due to the cold ass weather we've been having! I'm trying to be as careful as I can though as the skin problems I had early on in treatment felt very devastating and I don't want to go through that again!!
My sleep has been all over the place lately so I think it's a good thing that I'm actually tired. There was at least a week where I would not sleep more than four hours a night, had super vivid dreams to the point of feeling like I hadn't slept at all and yet was completely unable to nap during the day. If I was lucky enough to fall asleep it was not restful and made me feel worse upon awakening.
The good news? My long term disability was finally approved through the end of treatment!!!! I need to call my case manager tomorrow (sorry dude, I've been busy sleepin') and double check that everything is in order but as far as I know we're good to go!! Yay!!! What a huge relief given all the bullshit I've been put through since June!
I will try to update again soon I've been so out of it I generally don't know what day it is which makes it tough to keep up on this thing. Thank you all for reading it though it means the world to me!!
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Friday, November 18, 2011
note to self:
As my day has progressed I've felt worse both physically and emotionally. The physical part (mainly nausea) is normal but the headache is pretty intense, add to that the fact that my mind won't stop telling me that treatment is just unbearable, is in itself, unbearable! Ugh. I realized shortly thereafter that I forgot to take my meds this morning and took them in the afternoon. I also didn't divide all of my pills up by day like I had planned to do so I think I forgot to take my anti-depressant. It's weird to think that only one day of not taking it might be the culprit. Well I guess that's about it, just needed to make a note of this for myself and for anybody out there who might end up going through the same thing. Time to take my shot and go to bed. I hope to wake up, TAKE ALL OF MY MEDS ASAP, and have a better night tomorrow, it is after all, a new day!
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Tuesday, November 15, 2011
Getting Through It!
I suppose it's fair to say that things are going well. I've felt a little more sick last week but the fatigue wasn't quite as bad. I went to Seattle this weekend for a high school friend's memorial and was so tired afterward I slept Monday away and didn't leave bed much today until I met up with some friends for a few hours. Now I'm home and actually rather awake though I have no question that if I lay down I will likely fall asleep easily. While I seem to either be nauseous or fatigued day by day at least lately it hasn't been both at the same time. I've had many days like that and I'm glad they are in the past. This thing isn't over just yet though so who knows. I'm just glad I can finally see the light at the end of the tunnel!
I received all of my retro pay from work and will be getting paid through Nov 30th. Short Term Disability is reviewing my last doctor notes to see if I qualify for an extension after that. My old phone was freaking out and not holding a charge so I bought myself a new one but otherwise I'm just socking the money away as I have a feeling most of it will be going right back to work for PTO I used but didn't accrue and other various expenses I haven't thought of yet. I have a lead on a potential new job since I likely won't have one to return to in January. Nothing set in stone whatsoever but good to have on the backburner, ya know? I also plan to contact a civil liberties and/or employment lawyer soon to find out what my rights are and if anything can be done. While what my work has done to me appears to be perfectly legal it isn't ethical at all. I don't know if that gives me anything to stand on but I think it's worth bringing to someone's attention as it really needs to change. Enough about work stuff though, that shit just stresses me out!!
At least at this stage in my life I know without a shadow of a doubt that no matter what happens I will be taken care of. It's been proven time and time again and I know full well I'm doing the right thing for myself physically, mentally, and emotionally. I'm so glad treatment is working and that I only have two months to go!!! :)
I received all of my retro pay from work and will be getting paid through Nov 30th. Short Term Disability is reviewing my last doctor notes to see if I qualify for an extension after that. My old phone was freaking out and not holding a charge so I bought myself a new one but otherwise I'm just socking the money away as I have a feeling most of it will be going right back to work for PTO I used but didn't accrue and other various expenses I haven't thought of yet. I have a lead on a potential new job since I likely won't have one to return to in January. Nothing set in stone whatsoever but good to have on the backburner, ya know? I also plan to contact a civil liberties and/or employment lawyer soon to find out what my rights are and if anything can be done. While what my work has done to me appears to be perfectly legal it isn't ethical at all. I don't know if that gives me anything to stand on but I think it's worth bringing to someone's attention as it really needs to change. Enough about work stuff though, that shit just stresses me out!!
At least at this stage in my life I know without a shadow of a doubt that no matter what happens I will be taken care of. It's been proven time and time again and I know full well I'm doing the right thing for myself physically, mentally, and emotionally. I'm so glad treatment is working and that I only have two months to go!!! :)
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Saturday, November 5, 2011
Another Insurance Update...this time it's good news!
I finally heard back from Short Term Disability! Good lord it has felt like a year has passed just dealing with this issue alone, but I suppose it's only been a month and a half or so, anyway...
The appeal was approved!!! They have reinstated my claim and have agreed to pay me until November 30th and I should hear back from them either Monday or Tuesday about what my options are for after Nov. I can't begin to tell you how happy I am right now! Granted I won't fully believe it until the money hits my checking account, but still. Such a relief! As far as I'm concerned they should be paying me through January but after all the shit they've put me through this much is better than nothing which is what I was starting to expect. Guess it goes to show that staying patient and continuing to take action when I can is finally paying off!!
On a quick medication/side effect note: Tonight's shot was one of the worst I've had to deal with! When the shot was only half way expensed I felt a wave of nausea sweep over me and by the time I was done thought I might pass out. I still don't feel well but the major extreme reaction has subsided. Time to take my pills and call it a night! Up until right now I've actually felt pretty good this week. Let's hope I go back to that come morning, I was starting to get used to it!
The appeal was approved!!! They have reinstated my claim and have agreed to pay me until November 30th and I should hear back from them either Monday or Tuesday about what my options are for after Nov. I can't begin to tell you how happy I am right now! Granted I won't fully believe it until the money hits my checking account, but still. Such a relief! As far as I'm concerned they should be paying me through January but after all the shit they've put me through this much is better than nothing which is what I was starting to expect. Guess it goes to show that staying patient and continuing to take action when I can is finally paying off!!
On a quick medication/side effect note: Tonight's shot was one of the worst I've had to deal with! When the shot was only half way expensed I felt a wave of nausea sweep over me and by the time I was done thought I might pass out. I still don't feel well but the major extreme reaction has subsided. Time to take my pills and call it a night! Up until right now I've actually felt pretty good this week. Let's hope I go back to that come morning, I was starting to get used to it!
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Tuesday, November 1, 2011
Things are lookin' good!
All of my blood tests are showing good signs of being cured!! I told my specialist I feel more fatigued and more sick than I did in the beginning. He explained that while that isn't the normal response it is in no way unheard of and to just keep riding it out. I will take my last shot on Jan 13th and my last pills on Jan 20th!! I'll see him on Jan 23rd and then not again for six months when we get the final word if I'm in the clear! He told me the way things are going right now I should expect good results and that I've handled all of this with a great amount of grace. That was one of the nicest things I've heard. I don't always feel like I have but from a doctor who sees patients for this all the time, I tend to believe him.
Work and insurance has been a pain in my ass. First they told me they would do my best to keep MY job for me. Then later on I get told that if they can't keep MY job I will at least have A job when I return. Now the final word is that they have not held my job and that I will have 90 days to reapply within the company upon returning from medical leave. I'm slightly more than pissed. Not only is my Short Term Disability still under review but after eight years with a company you would think they would have tried harder for me. I've given them the majority of my adult life and always done right by them and this is how I get repaid?! Guess that's what happens when you work for a large corporation. I still would have thought my dedication to them would have meant something, apparently I was wrong.
Thankfully I realize the stress this could cause is not worth threatening my health so while I'm still fighting them I'm not letting it consume me. I'm off of work to help eliminate stress and all of this only adds to it. I will let the chips fall where they may and trust that no matter what I will be taken care of!
Work and insurance has been a pain in my ass. First they told me they would do my best to keep MY job for me. Then later on I get told that if they can't keep MY job I will at least have A job when I return. Now the final word is that they have not held my job and that I will have 90 days to reapply within the company upon returning from medical leave. I'm slightly more than pissed. Not only is my Short Term Disability still under review but after eight years with a company you would think they would have tried harder for me. I've given them the majority of my adult life and always done right by them and this is how I get repaid?! Guess that's what happens when you work for a large corporation. I still would have thought my dedication to them would have meant something, apparently I was wrong.
Thankfully I realize the stress this could cause is not worth threatening my health so while I'm still fighting them I'm not letting it consume me. I'm off of work to help eliminate stress and all of this only adds to it. I will let the chips fall where they may and trust that no matter what I will be taken care of!
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Saturday, October 29, 2011
I'm still here
I want to update more just for some reason I haven't been able to remember to do so, or stay awake long enough to do so, or any amount of random combinations. I took my shot about an hour ago and right now I can't even see straight. I think it's time for bed. Hoping to update more about work and medical here soon. The physical/emotional side of things are all over the place but again, more on that later. Thanks again for all of the love and support from those who read this blog. It means a lot to me. I've already managed to help people and didn't even know it. I owe it to those people to keep up on this and I'm sorry I haven't done the best job of that.
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