An account of my journey with peg-interferon/ribavirin treatment for Hepatitis C.
Wednesday, December 28, 2011
Only 3 shots to go!
The nausea has subsided yet again but the fatigue is back almost worse than ever. For at least two days a week I'm doing nothing but sleeping and still have little to no energy to do anything the rest of the days. It's a chore to walk more than a mile and staying up for a solid 12 hours is like breaking some kind of record. It has been done lately because of the holidays and whatnot but again I turn around and end up sleeping for two days to make up for it.
With less than a month to go I'm really accepting more than ever how my life will have to be until the 20th or possible a few weeks after that. If I just need to sleep and take it easy, I will do that. I'm sure that sounds silly to a lot of people. Who wouldn't want a completely valid reason to sleep all day? But for me it's hard because I've always been so active with work and/or a social life that this still, even six months later, feels so different.
I am also excited to see where 2012 takes me. I am enrolled in classes at PCC and looking to take charge of my life like never before. I feel in a lot of ways I have been given a true second chance at life and I'm not willing to waste it wishing and hoping. Accomplishing your dreams takes ACTION and I've proven to myself I'm able to do that so why stop now?
Friday is my 31st birthday. I will be going to see Storm Large with one of my best friends and then coming home and taking my shot. Such a weird way to think of my birthday but again I couldn't be happier that my birthday is yet another reminder of how close I am to being done with treatment!
I hope everybody reading this is having a wonderful holiday season and has a great New Year!
Wednesday, December 14, 2011
Oh, right... nausea.
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!!
Monday, December 5, 2011
I don't like Mondays
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!
Friday, November 18, 2011
note to self:
Tuesday, November 15, 2011
Getting Through It!
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!!! :)
Saturday, November 5, 2011
Another Insurance Update...this time it's good news!
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!
Tuesday, November 1, 2011
Things are lookin' good!
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!
Saturday, October 29, 2011
I'm still here
Saturday, October 15, 2011
Has it been nearly a month, really?
My back went out on me a few weeks ago. I finally made it to a naturopath because of this (for an adjustment) and now am going back to her next Friday to discuss some food and other alternative options to help with the side effects of treatment. Also between the massages and adjustment I had my back is feeling almost completely better!
This last week my body has been fighting off getting sick. It sort of reminds me of when I first started treatment except that I'm also coughing which makes me think it's actually a cold not side effects that's causing it. My stomach hurts, my body goes from hot to cold, and is constantly achy and tired. My mind has been so foggy I can't seem to make sense of most things right now. Yesterday I spent almost the entire day sleeping and feel like I could do that again today but I have things to do around the house and some errands to run so I'm hoping that will not be my fate. I have surely let the house slide over this last week and am in dire need of doing laundry and cleaning my kitchen. Unfortunately I simply can't be bothered. Thank god for friends as a few people have offered to come over and help. My house isn't THAT bad but it's still below my living standards. I do believe today I will get everything accomplished I need to, and hopefully still get in a nap!
Friday, September 30, 2011
and so it goes...
As for me I'm much less stressed out these days but I think it's causing me to crash. I finally am living alone in a house that I love in a neighborhood I adore. There was a lot of change and drama leading up to getting to this chapter in my life and now that I've finally had a chance to relax I feel like my body is shutting down. My aches and pains over the last week have been far worse than they've been in some time and I'm easily sleeping 12+ hours or napping multiple times a day unless I force myself to stay awake. Today for example I want nothing more than to go back to sleep but at the same time want to do some cleaning around the house and am afraid if I take a nap I might not wake up until tonight. Sigh. As I type this my arms and shoulders are becoming more and more sore. My hands aren't hurting as bad as I've mentioned previously so that's good, it tends to come and go though so in two days that could be a completely different story.
All in all I'm hanging in fairly well. I only have until the second week of January to keep doing this thing and given how quickly September came and went (well it'll be over tonight anyway) I have no doubt that the next three or so months will cruise right by as well. Thank god for that!!
Wednesday, September 21, 2011
It's all up in the air
As far as side effects go, I was very sick last night and have been very fatigued in general lately. My spirits have been fairly high even with all of the stress from insurance/work bullshit. I've managed to start walking a little more again, maybe close to two miles a day. It still makes me tired after the fact but I'm not as fatigued during the walks. My sleep has been a little off which is probably contributing to my fatigue. My body aches still come and go. Right now it's mainly my neck and upper back. Luckily my legs haven't been giving me as much trouble lately. I'm sure that won't last so hey, I'll take it while I can! On that note I think it's time for some Aleve and a nap!!
Wednesday, September 14, 2011
Chill time is GOOD!
Besides meeting up with a friend here or there for coffee or food I've continued to spend the week laying low, relaxing and sleeping A LOT! I can't begin to tell you how nice it has been! Part of me started to get upset earlier today thinking I should be doing more. I had to quickly remind myself the whole point of being off of work is to do exactly that. I need this time to recoup and take it easy yet it is so easy to forget. Maybe I've been off work just long enough that it's getting to me, but at the same time I still can't imagine going back to work and being the productive member of a team they would expect me to be.
My hands and neck have been extremely sore for awhile now. My hands hurt again bad this morning but right now feel relatively good. My shoulders and neck feel horrible though! Thankfully I go to my massage therapist tomorrow at noon which should help. That also gives me an excuse to walk around downtown a bit which I always enjoy. It's only supposed to be about 70 degrees tomorrow too, which is pretty awesome!
As if I haven't slept enough today, I believe it is time to hit the hay again. I hope all of you out there are doing well. Thank you for your continued love and support. I can't begin to tell you how much it means to me and how much it helps!!
Thursday, September 8, 2011
7 down, 4 to go
I haven't heard back from Short Term Disability yet, I know it's only been a few days but for some reason it feels like a really long time. Thankfully I've positioned myself financially to be off work until after treatment is over, and am staying positive that it will all work out well. The last 24 hours is a perfect example of why I shouldn't be working, I pray they will understand this.
No matter what happens I'm stoked to have gone through treatment. While some moments have felt like a freakin' life time all in all it's moved relatively quickly. All of the side effects (which continue to kick my ass by the way) have taught me so much about myself that I really don't think I would have experienced otherwise, not the way I have anyway.
Back to bed I go. Gotta get lab work done in the morning.
Goodnight (or something like that)
Tuesday, September 6, 2011
What time is it?
I know getting on the computer is the worst thing one could probably do for sleep issues but my body is achy which never helps me sleep and I'm noticing just how awake I actually am, so that's that I suppose. sigh.
As for more legit news, I mailed out my short term disability appeal last week. Still staying positive that between my letter and whatever my specialist sends them that they will understand time off work truly is the best option. Guess time will tell...
Thursday, September 1, 2011
3am ramblings
Speaking of not working, I have my work cut out for me if it's going to stay that way. I now have a ton of paperwork from my HR department and Short Term Disability that need to be returned in the next couple of days. Getting the items they've requested sent back to them won't be an issue, it's whether or not they still want to deem disability benefits (and now my medical leave) necessary or not. It might always make me shake my head when I think about how stressful medical leave actually is. Granted it's better than being at work, but any added stress is still a pain in the ass!
Tuesday, August 23, 2011
Insurance Update
Thursday, August 18, 2011
More Insurance Drama
Monday I received a call from my claim rep who said she received the doctors notes (from the 24 wk check up) and while he gave me an estimated return to work of January they believe I'm doing much better and need to reevaluate my claim. SERIOUSLY?! I told her I can't handle stress and am still fatigued and that the only reason I might be doing "better" is because I'M NOT WORKING!!!
I really wanted to get worked up about the phone call, and I suppose I did for a few moments. Ultimately knowing that freaking out about it would do me absolutely no good I was able to calm down. It's going to happen the way it's going to happen regardless if I'm happy with the outcome. The other thing I'm becoming increasingly aware of is that even when it looks different than I think it should usually the outcomes are better than I expected. I truly do hope that disability will understand the necessity of continuing leave for me, but if not I guess I'll cross that bridge when I get there. For now I'm just waiting to hear back from them and trying to keep my head up!!
Wednesday, August 10, 2011
24 week checkup
I mentioned in my last post that the nausea and hair loss was kicking back up. Sure enough my specialist confirmed that hair loss starts at approximately the half way point and that there is no way to really know if the nausea will get better or worse for the second half. He prescribed me something for the nausea to take on an as needed basis and assured me that any hair loss (no matter how major) is only temporary and will grow back after treatment. The hair loss hasn't been horrible yet, but from the sounds of it there is a good possibility it will get worse. Thankfully I'm feeling good enough about treatment that I haven't allowed any future tripping or worst-case-scenario type things to bog my mind down. I just want to keep trudging forward and hopefully be able to tell the world I'm cured after this is all said and done!
Thursday, August 4, 2011
Better or worse?
I go back to my specialist on Monday. It was supposed to be this week but they had to reschedule. I don't know if he'll be able to provide me any solutions for these side effects but I will ask and am pretty open to trying anything (that's legal and not addictive of course). If you read this and think of something please leave a comment here. The nausea has become routine enough that I'm more or less used to it (even tho it sucks) it's my skin I'm most concerned with so again if ya think of something please let me know!
Sunday, July 31, 2011
World Hepatitis Day
Wednesday, July 20, 2011
The Insurance Game
The fatigue I'm experiencing seems to be changing faces a little bit. Besides being fairly tired all of the time, my sleep is also extremely inconsistent. I can't seem to sleep through the night to save my life and while I know I could take something I'm honestly freaked out by sleeping medication. As if I will take them and never wake up or something. Might sound silly, but that's where my brain takes me. sigh.
My arms and hands have been hurting extremely bad for approximately two weeks now. I don't know if I'm sleeping wrong or what but almost daily I wake up to my hands hurting so much so that it hurts to grab my toothbrush or a glass of water. I haven't mentioned that to my doctors yet yet, mostly because I assumed it was temporary but I think I'll make a point of mentioning it on Aug 3rd because sitting at my desk for 8+ hours a day in this sort of pain would not be good. Ibuprofen and the like haven't helped much either.
The doctor gave me pills for my skin, just a weeks worth that are supposed to help fight off different skin problems but it causes extreme nausea. I just took the last round of pills this morning and am so glad to be done with them! The pills have helped some. I think it was supposed to be more of an internal helper however I was noticing my skin just wasn't healing well and it seems to be doing slightly better. It'll be nice as well to see where my nausea level actually is after this stuff is out of my system and hopefully it's a ton more bearable than my current state. Food or no food, I have more or less felt like puking all week. I'll be so glad when that feeling is gone!
This last weekend I missed out on a movie premiere and concert that I had every intention of going to. Those who know me will fully understand just what that means. Lorrie no feel good :( More updates to come soon, hopefully happier, shinier updates.
Thursday, July 7, 2011
my skin hates me
Tuesday, July 5, 2011
Good News
My sleep is pretty messed up right now. I had a fairly active day on Saturday and proceeded to sleep all day Sunday. I was up at 9am Monday and didn't fall asleep until around midnight and yet I'm wide awake less than six hours later. sigh. Good thing I am off work huh? My nausea was also pretty bad yesterday, thankfully that only seems to hit about once a week at most these days but the fatigue is still unmanageable. Speaking of, think I will attempt sleep again or at least just go stare at my ceiling for a bit.
Monday, June 27, 2011
Just what I needed
In the last week I have joined the gym, worked out (either yoga, weights or swimming) three times and have done a lot of walking downtown and in my neighborhood. I've bought a lot of healthier food for the house and am trying to eat at home more. I've also done as much sleeping as I've felt needed but for some reason the last two days or so I can't seem to sleep for more than a few hours at a time. I still only seem to have five to six hours in me before I just need to chill out and do as little as possible. However not having the stress and mental fatigue from my job have helped improve my mood immensely!! I still get tired and my body still hurts. I still get a little confused and emotional but not nearly like I did when I was working and trying to manage so many things at once. Even when issues do come up there is no pressure to make it go away, I can just accept what is happening and take appropriate action instead of fight with how I feel and what action to take based on "business need".
I'm also starting to really tap into the artistic side of myself and really want to start making things. I don't know yet what those things might be, but what the hell. I have time on my hands and I'm enjoying myself.
I really rather not think about it but for the sake of this blog I will add that my doctor also informed me that a lot of their notes they are submitting to my insurance states I should try to work part time at least on a trial basis. This news is freaking me out a tad as my job literally cannot be done in three hours a day. It's just not possible. I would be a hindrance to my company and those around me and likely more stressed out than I was before I left. This leads me to believe my claim for short term disability will be declined or they will force me to work at my job a few hours a day which as just mentioned is far more trouble than it's worth for all involved. Soooo if you're reading this please put it out to the universe, pray, etc that everything works out. I'm doing my best to simply trust that everything will happen exactly as it's supposed to and that keeps me calm most of the time. It would be super rad to know when I'm getting paid next though!
Okay, now it's time to attempt sleep again. Thanks for reading!
Wednesday, June 22, 2011
Self Care
After talking to my doctor the decision was made to take me out of work for approx. 6 months. My treatment will last slightly longer than that so we will see what ends up being best but I hope I will feel tons better by then and can transition back to work.
This has been my first week on leave from work. The last two days I've slept a lot but also ended up holding odd hours (I hold odd hours anyway but for some reason this surprises me, go figure). This morning I woke up ridiculously early and I'm not so happy about it. I'm going to attempt sleep again when I'm done with this update.
It's very weird to not go to work however it's a huge weight lifted from me and will give me a chance to level out and make positive changes. So far I'm taking time to just adjust to my needs. If I need sleep, food, light exercise, etc, I'm doing it. I really need to focus on eating better and plan to start forming that routine in the next week or two.
Speaking of needs, I'm headed back to bed. Have a great day!
Tuesday, June 7, 2011
So tired...
You know what would be great? If I could start feeling better mentally (hey, I'd take physically too) and could turn this blog into a slightly happier read. It bums me out that I feel like I'm just constantly bitching but like I've also said multiple times, my intention of this blog is to be as honest as possible so hopefully when someone else finds out they have Hep C and have all sorts of questions about what treatment might be like this will be there for them. Resources are low, as is awareness, I still need to find a greater way to increase that than by this blog alone. I do thank all of those who read this though and encourage you to help with awareness and get tested!
Tuesday, May 31, 2011
A little out of sorts
The last couple weeks have been very trying. I feel manic depressive but mostly just depressed. Even though I can say I know better I'm somehow plagued with thoughts that I will always feel tired and therefore worthless and that is just the beginning.
On the good days I'm totally content until I'm alone in silence. Sometimes even then I'm able to turn it over to the universe and be truly grateful for how well treatment is going, how awesome my friends and family have been through all of this, and so on. Lately however I'm crying myself to sleep regardless of how shitty or absolutely wonderful the day has been. I don't like admitting that but I feel I owe it to myself and anyone reading this to be as honest as possible.
Since I obviously don't want to feel this way I'm trying to find actions I can take surrounding all of this. I have been searching for therapists with no luck for awhile now. Yesterday one finally called me back and she's only a few blocks away from my house! I have an appt before work on Thursday, knowing this helps me relax ever so slightly.
I really wonder if I might need to work less. Most days I'm so easily overwhelmed it kinda freaks me out. Yesterday I went to a 2 hour meditation meeting and managed to sleep a little over 10 hours last night. I went to bed feeling extremely overwhelmed even though the meeting was awesome and am pretty on edge this morning. I'm trying to convince myself to change my perspective and that I can start over at any time. Let's hope it works!
Tuesday, May 17, 2011
Is this thing on?
I updated my blog from my Blogger app last week just to find that the website was having issues and it never sent. Now it keeps erroring out. Long story short I've been an emotional basket case the last week or so and really fucking tired. I'm still grateful for treatment and all the awesome people in my life that are helping me along the way.
Thursday, May 12, 2011
Ups and downs
Getting the news that treatment is working really helped lift my spirits for a moment but slowly reality set back in that I will be putting up with all of this until January. Ugh. I suppose it doesn't help that I've been sick the last two days. I tried so hard to make it into work yesterday but my body just wasn't having it. Today I struggled for a moment but managed to make it to work. The longer I'm awake however, the worse I'm feeling. I'm doing my best to stay positive and make it thru the rest of my day but honestly I'm just not sure. I want to sleep for days and would love my muscles and stomach to stop hurting already. Ok, back to work I go...
Wednesday, April 27, 2011
It's working!!
Rapid Virological Response
RVR means my viral load was negative at 4 weeks. If I had been negative at 12 weeks I would have a 55% success rate. Because I responded so quickly that ups my chances to 90%!!
I can't tell you how badly I needed that news. I was getting so depressed! The doc said he did all the reading up to see if we could shorten treatment to 6 months but there isn't strong enough evidence to suggest it's worth doing so I will still continue treatment for the full 48 weeks. He also told me the fatigue and depression is bound to stick around at this point but at least I have a little more hope and know all of this is totally worth it!!
Saturday, April 23, 2011
10 weeks and counting...
Future tripping aside, this has also brought up a lot of emotion and realization that I'm not actually processing all the changes that are taking place mentally and physically since I started treatment. I want to start doing that, yet I don't have a clue where to begin and that is a very paralyzing feeling. Thankfully I have surrounded myself with some of the most loving friends and am trying to let them carry me without beating myself up for not being able to handle it all on my own. I think I am finally giving into the idea that I can allow those who care about me to help me. It's scary but actually pretty awesome when I let it happen.
I'm moving next weekend from my one bedroom apartment to a kick ass house with two roommates, one of which is a good friend of mine. While in no way do I plan to get all codependent on her ass, I do look forward to just having other people around. Coming home day after day to no one other than my cat is taking it's toll. I love my cat don't get me wrong, but when I'm seriously fatigued and/or sick it's just nice to know another human is physically around. I truly believe this move will be the best possible thing for me.
This might be the most emotional post for me yet... I hope you got something out of it other than me just unloading. I'm trying to keep this as real as possible without sounding completely doom and gloom. No matter how sad or scared or frustrated I get I have yet to regret starting treatment.
Tuesday, April 19, 2011
What's next?
Right now the biggest concern is my skin. I'm developing rashes and dry flaky skin it's to the point where my eyelids literally hurt when I blink. It's all over my body but my face is the most noticeable since it's not covered by clothes. I've tried a ton of different creams and things in the last two weeks but nothing has helped a great deal. I went to the doctor yesterday, she's treating it as eczema, gave me a steroid cream and is having me use Cetaphil soap and cream. I'm also going to work with no makeup on and that is really a hard thing to get over. My skin is so red and blotchy and while I know there are a million things worse in the world that could be happening to me, it's really tough to deal with for some reason.
I go see my specialist next Monday. My primary doctor wants him to look at my skin, see if there is any progress and see if he has any other suggestions. I also go back to my specialist on the 4th to find out if the interferon/ribaviron treatment is taking. That has been filling me with fear and I really don't like it. Trying to remember that none of this will kill me, that none of this is the end of the world and that I will absolutely be taken care of no matter what is comforting but not for very long. My mind keeps wanting to make this out to be way bigger than it is. Don't get me wrong, what I am going through is scary and it is a BIG deal however I have to remember I can walk through all of this and I will come out the other side.
Wednesday, April 6, 2011
Week 8
The last few weeks have been pretty trying on me physically and emotionally, too. Most days I feel emotionally strong. I realize this whole thing has an end date and thankfully that puts me at ease most of the time. There are other times it upsets me greatly, especially when my mind tells me I have no right to bitch about how I feel or what's going on because I'm choosing to go through treatment and this is just how it has to be.
The fact is I contracted Hepatitis C from blood transfusions at birth. Without those blood transfusions I wouldn't be alive. I'm glad I am alive, but it sucks that this is what I get to deal with. At least I have options. I can work toward being healthy and possibly clearing this stupid virus that could potentially kill me, or I could do nothing and worry about some day developing liver cancer or cirrhosis. Today I choose to take steps at becoming as healthy as possible. That includes going through this treatment.
But let me tell you, this shit is hard! It's basically chemo and of course when you're pumping your body full of toxins it's going to react. Not only am I fatigued most every day but lately I've been dealing with dry skin and a great deal of nausea, diarrhea, and heartburn. I've averaged one day a week where I've had to stay home from work mainly to just sleep and let my body settle. Today was one of those days.
Of all things my specialist is concerned about the rash/bruising that seems to be happening so easily lately. My skin is very dry and therefore rather itchy. Nearly every time I scratch my skin I'm leaving red marks and a lot of the time they are staying for a long time. They look more like rashes or bruises of some sort. I go in on the 25th to see about all that. It could mean my body isn't responding well to the treatment but hopefully it's "normal" and they can give me something. More than anything I want this to work, I want to clear this. The idea of my body rejecting treatment is something I really can't handle right now.
Well, there you have it. I have just spent the majority of Wednesday sleeping and eating bread and water. I'm headed back to bed after my longest attempt at being awake today, a grand total of 3.5 hours! I hope to wake up in the morning with a calm stomach and a little less tired than I've been the days prior.
Monday, March 28, 2011
nausea, blah.
Yesterday I made plans to go to late lunch/early dinner with a friend at 4:15. We shared a basket of tater tots and I had a little bit (more like hardly touched) crab mac'n'cheese. I even mentioned to my friend I would probably get sick if I tried to eat but could at least take it home for later. Well, sure enough I was running to the bathroom before I knew it. My stomach stayed extremely upset all night and I finally just forced myself to fall asleep.
Today I woke up and within twenty minutes thought I might throw up. I still tried to get ready for work but just couldn't do it. Even now my stomach is just in knots and I don't know how to make it better. After struggling to make it through work on Friday I figured staying home and taking it easy today was the best thing I could do for myself. In an attempt to settle my stomach I just might go through an entire loaf of Dave's Killer Bread today. So far I've consumed a half cup of coffee and about eight slices of toast. I'd love to fall asleep and wake up "all better" however I really am not tired and the thought of laying in bed not able to sleep pisses me off to no end.
Too much information for you? Yeah, probably huh. However this blog was created with the intention of giving a true break down of what my life is like through treatment, so there ya have it.
Now I'm going to read a book and watch the sky change from blue and white to gray and back again. After I mentioned not feeling tired I think I might be, so hey, that works too!
Wednesday, March 23, 2011
Going through the motions
I have found that taking my shot no longer scares me and taking a handful of pills has become commonplace. I figured that would all get easier but really didn't want to believe other things would get harder.
I'm having a hard time dealing with stress. It scares me, it is far too overwhelming right now. My diet is weird. Sometimes nothing I eat bothers me other days everything runs right through me. Fatigue is still an issue and I really don't know any good way of dealing with that.
My shrink started me on Celexa this week. I'm hoping it can level me out emotionally and I'll be able to better deal with work and life for the next 10 months.
Think that's about it. Somehow I managed to get out of the house on time which I didn't think would happen so I guess today is off to a decent start. Here's hoping the rest of the day goes well.
Friday, March 18, 2011
Oh anxiety, you suck!
Yesterday morning started out great. I woke up early, spent time with friends before work, then came home to finish getting ready for work. Right before I left the house a panic attack set in, seemingly out of nowhere. I tried to put myself together but found myself sobbing every time I thought of leaving the house. This is not good. I kept trying to regulate my breathing, tell myself I was going to be okay, and so on. For whatever reason that just didn't work. So instead I slept, listened to ambient music and did my best to relax. Still feeling pretty nuts I figured it was time to enlist the help of my friends and get the hell out of my own head! My friend came over around 2pm, we talked for awhile then went to a plant store, ate at grilled cheese grill and kept all conversation loving and light hearted. It helped so much!
I also set up an appt to see my psychiatrist this morning and totally overslept :( this of course kicked me back into freak out mode but after talking to my doctor we simply set up an appt for Monday morning instead. Crisis averted!
I'm now on my way to work. I can tell my anxiety is a little high but hopefully will be bearable. I also am doing my best to ask the universe to take these feelings from me so I can be the best employee, friend, and daughter possible today.
Alright, time to do a little reading then get my day started!
Saturday, March 12, 2011
Ughhh!
I am out to see a friends band play and am in so much pain I just want to cry. My lower back and legs are so achy I honestly don't know how I'm sitting still. Ok rant over.
well, hmmm...
Friday, March 11, 2011
One month down, ten to go
This has by far been the longest month of my life. I am however, extremely grateful to have the chance to heal and possibly even clear this silent killer of a virus that sits inside me.
This has been a rough week. Wednesday was the worst, yesterday a bit better and today somewhere in the middle. Now I get to take my shot tonite and go through the motions all over again. I may appear to be bitching, I suppose I am, but I also know this will be over soon enough and seeing how much its teaching me about myself I already know its worth all of the pain and frustration.
I'm making myself go for walks on my lunch hour. Now that the sun is out I don't mind. I think its helping a little with the fatigue too. Not instantly but toward the end of my day I notice I'm not as exhausted as normal.
Ok off to walk for a bit...
Wednesday, March 9, 2011
Feeling helpless
I don't care for "poor me" updates but today is another one of those days I'd much rather wish I had completely slept through.
I woke up sick in the middle of the night. I think I stayed asleep after that but felt horrible upon waking.
I had to bid farewell to my friends from Canada, too. Because I wasn't feeling well I don't think it showed but it was sad to see them go.
I went and got blood work done today and slept, a lot.
I've been an emotional wreck all day. My body hurts from my head to my toes and I'm just tired. So freaking tired.
I decided to meet up with friends for a bit tonite as I need human interaction before I totally lose it.
Ok enough for now. Thank god tomorrow is a new day!
Saturday, March 5, 2011
I just might have this figured out
Once I got home and started to decompress from the days events I immediately felt my anxiety rise in anticipation of taking the shot. I talked to a friend for a couple of minutes while my shot was reaching room temperature and he was able to calm me down. Thank god for that!
Now that I've had a mini freak-out, it's time to just do it and hope for the best. I managed to get the shot fully assembled on the first try and gave myself the shot with no problems. Hell yeah! I'm becoming a pro I tell ya! ;)
Now time to get some sleep (hopefully). Tomorrow I may likely sleep the day away until my friends and I meet up for dinner at 7pm. I'm hoping to be feeling okay enough to spend time with people before that but also trying to remember that self care is very important and if I need to rest I am allowed to do so. On that note, I'm calling it. Goodnight!
Monday, February 28, 2011
Sometimes I just want to scream
This is a scary experience and I just hate the helplessness that comes along with putting myself through such treatment, no matter how "worth it" it is. While I am not up against the same scare as cancer patients and will not die tomorrow with or without this, it is still my body, my mind, and my life that is being affected and right now, it sucks!
I'm glad I can come here and just ramble endlessly if I want. I need an outlet when there is no one around to talk to. Now it's just me, the universe, and of course, the world wide web. This also serves as a journal of sorts, and hopefully one day will be something I can look back on with pride for getting through it. Not solely on my own either, I know this. For I have many friends and family who are already helping me so much. I also hope some day a person will find this blog and be able to see what I went through and hopefully after all said and done this will be a place of hope for others. I know for years all I've wanted to find online were pure, honest details of what treatment was like; sadly it was a hard thing to find.
Okay, time to jump off the soap box I feel I've somehow created and call it a night.
Saturday, February 26, 2011
That was a trip
Friday, February 25, 2011
Success!
Tuesday, February 22, 2011
Not a good day
Today is rough. I feel more fragile than I have in awhile. All morning I've just wanted to cry. Everything I eat over the last few days gives me heartburn if not pure nausea. I've also had headaches pretty bad and I guess today is just a breaking point. I really wish I wasn't at work today.
Saturday, February 19, 2011
Shot #2 and other stuff
I had some issues getting the needle set this time and also felt horrible physically and was exhausted as well so nothing was okay for me. Thank god my mom was there to help otherwise that shot might have ended up in pieces on the other side of the room and well, that would have been a very costly mistake on my part lol. I really allowed myself to get freaked out this time, even broke down and cried. I tried to tell myself over and over that you can't feel the needle and it's not a big deal, but I sure didn't want to believe it. I poked my leg a couple of times before actually administering the shot. I now have a teeny, tiny Mi Vida Loca symbol on my left leg, haha.
I didn't sleep more than thirty minutes at a time last night. That pretty much sucked. I was up from 5a.m. to 6-something a.m. and up again at 9a.m. to go to the dentist. After the dentist my mom and I went shopping, stopped and ate breakfast and went back to her place so I could sleep. I only managed to sleep for about an hour solid then found myself extremely pissed off that I was sleeping in the middle of the day. *sigh* This is not easy for me. I am used to being so active and the idea of having to lay low on the weekends is not my idea of a good time. Thankfully, I only have 47 more weeks to go. Right now, that thought hardly helps.
We then went to P.F. Chang's to partake in their happy hour food. I also had a virgin pear mojito which was very yummy! I love soda water with lime, but sometimes you gotta mix it up! The bartender who helped us was the same as last week and she's very nice. I love how cheap (and good) their happy hour food is!
I'm also realizing why anorexia and/or weight loss is a common side effect of this treatment. I haven't logged it specifically but it seems to me that I feel nauseous after I eat anything that isn't a small snack. As a friend also mentioned I need to make sure I'm drinking lots of water as well. I do really well drinking water during the week, especially at work, but not as much on the weekends. *Pauses to grab a tall glass of water* Okay, that's better.
Honestly, when it comes down to it I have to say I'm pretty happy with how treatment has gone in it's first full week. It feels a helluva lot longer than a week though that's for sure!
Think that's all I got for now. I was thinking about hanging out with a friend tonight but I'm almost thinking sleep is a better option.
Wednesday, February 16, 2011
moving right along
I saw the specialist this morning. It was very much a simple "tell me if you're having any side effects" type of appointment. He reiterated not drinking alcohol, practicing safe sex, and filled out my FMLA paperwork. The doctor also warned me to pay close attention to mood changes. Since depression is common, especially among those who have suffered from it in the past, I need to stay really aware of how I'm feeling and make sure to tell him and/or my shrink ASAP if it gets bad. I also had to have blood work done (this is going to be a very regular thing) and while it was only one vial this one HURT! At least from this point forward I only have to get my blood drawn once a month. "Only," that seems so weird. It could be worse, like once a week. So yeah, again...trying to stay grateful.
It's been snowing here this morning, a weird rain/snow mix, mother nature can't seem to make up her mind. I think I'm going to walk to get coffee in it and then catch the train to work. Have a great day everybody!
Saturday, February 12, 2011
Shot #1
Once we're back at my Mom's house I ran upstairs to pull out all of my instructions and got ready to get down to business. I went through all of the steps to prepare the shot. After the needle is in, the top of the redipen has to be pulled out in order to "dial" the dose. It wouldn't budge. Mom and I both tried, no luck. We decided we should go back to my house, get another shot, and try again. At this point I've laid the redipen down and start getting ready to go. My Mom grabs the pen to package it back up the best she can and it suddenly starts to leak. She grabs it again and sure enough top pulls up easily (just like it was supposed to). Weird, I don't get it, but thank god! I wanted to freak out so bad when it wasn't working, I allowed myself to stay calm though, yay for progress! After a few minutes of contemplation I finally gave myself the shot. It didn't hurt at all and I seem to have got the full dose in. I immediately fell tired which I'm sure was a direct result of stress finally leaving my body. Woke up this morning and seem to be pretty good. I've been a bit shaky and have had a headache off and on, but all in all not too bad.
Friday, February 11, 2011
Midday update
**FYI I was NOT at Pizza Hut automatic GPS deal on the Blogger app wouldn't let me change it, ha!**
The day has finally come
Fast-forward to November 2010, exactly 4 years later... I go to the doctor for what I figure is just a cold or something that won't go away. The doctor I see at urgent care thinks it could be related to my Hep C and that I should have blood work and ultrasounds done again since it had been about a year. This time I go to a different specialist and he moves me right into action. Now the treatment was approved at the beginning of January and it took until the beginning of Feb to receive my first round of meds, but wow, it's finally here. I should note that the sickness I was feeling was just a bad cold and not related to the Hep C, but I'm sure glad it got the ball rolling in that direction!
For the next 48 weeks: 3 Ribavirin pills in the morning, 2 at night. One shot of Peg-Interferon alfa 2b once a week, I've decided on Friday nights as I have weekends off and there is generally recovery time needed.
I took my first 3 pills at approx. 8:30am, and will take my shot tonight around 9pm as well as the other 2 pills.
I plan to keep this blog updated not only on my treatment process but anything HCV related I might come across and feel the need to share. Awareness is not where it should be and I hope to do my part to change that.
More later, time to finish getting ready for work...