I've been exhausted the last two days. Today I'm in a lot of pain :-/ mostly just my shoulders, neck, and arms however I have an overall feeling of blah right now. I might take a super hot shower then try to lay back down. I just moved into a rad new apt and I realize the stress of moving and trying to unpack (not very successfully mind you) has kicked my ass! This is a perfect example as to why I shouldn't be working while on treatment yet the good ole insurance peeps see it otherwise...
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!!
Thursday, August 18, 2011
Wednesday, August 10, 2011
24 week checkup
I can't believe I'm half way done!! All tests continue to come back that the virus is undetectable and my liver functions are normal. Woohoo!! Super exciting news!!!! I also set up the schedule for the last 24 weeks of appointments and lab work. That really made it feel like it's coming to an end. THANK GOD!! I'll have to test undetectable again AFTER treatment ends to know for sure that it worked but my hopes are high that all is well!!
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!
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?
Treatment is such a frustrating game. While I seem to have a little more energy than I have in weeks past my nausea is kicking in more frequently and my skin is freaking out again! I had a slight reprieve from the skin issues but seemingly overnight it's back. Ugh! Every part of my hairline, my lips, my ears are all drying out; the back of my neck looks rather gross as it doesn't seem to be healing very well. At least it's not my eyelids this time but goddamnit it's uncomfortable and makes me feel just plain ugly. To top it off I'm starting to notice how much my hair is actually falling out. I haven't put much thought into it and haven't noticed clumps of hair so I thought I was fine. Well it just dawned on me that my hairbrush is full of hair everyday. Thank god treatment is working and that this shit is only temporary!
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!
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
Did you know that July 28th was the first official World Hepatitis Day? Me either. Sad right? I mean I am after all undergoing treatment for this damn thing. My personal lack of awareness is my own fault, but honestly, it brings back into question how much awareness is truly out there and what I can do to contribute. Here's the article I found on twitter that started this whole rant. For now, I'm going to sleep.
Wednesday, July 20, 2011
The Insurance Game
I've been out on leave for a month now. Wow, it honestly feels weird to say that. Anyway... my short term disability is only approved through Aug 4th at which time they will have to review doctors notes from July 13th (they're technically already doing this now) and Aug 3rd (my follow up appt with my specialist) to determine how much longer I should be granted benefits. I know it's all part of the process but my god I feel like I'm constantly dealing with these guys and it STRESSES ME OUT!! Feeling stressed and overwhelmed were huge reasons for me not working in the first place!!
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.
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
Behind my ears, on my forehead, eyelids, scalp, back, arms and shins....dry patches. All over the place. Ugh. I feel so gross right now. The steroid cream the doctor gave me is seeming less and less effective. I see her in a week and will ask but until then I better do a damn good job of following her instructions so I can honestly say if it's working or not. It surely doesn't seem to be though.Okay, done venting. Everything else is going pretty good, still tired a lot but that's nothing new.
Tuesday, July 5, 2011
Good News
I found out last week that my short term disability is approved until July 24th. Ultimately this is good news but a little irritating that I have to be evaluated again so soon. I understand it though, just a bit annoying. This last week was much less active, I slept a lot more and my body was in a lot more discomfort. I went to the gym once and to a yoga class my friend teaches. Apparently those things combined was more than my limit. They've told me from the beginning that exercise will help with fatigue but this isn't proving to be true, at least not yet.
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.
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.
Subscribe to:
Posts (Atom)