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!

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!

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.

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.

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.

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.

Just what I needed

This last week has felt extremely long. I'm not saying that's a bad thing, but it has thrown me for a bit of a loop. Medical leave is definitely turning out to be exactly what I needed. While there are still some major stresses, *i.e. not knowing if my short term disability will even be approved and therefore not knowing when I'm getting paid next* just having this time to put myself first is a huge relief.

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!