Thyroid and other stuff

I called my primary care last Friday to see about scheduling an appointment regarding my leg pain and body aches. My doctor almost always has a week wait but luckily she happened to have a cancellation for her last appointment of the day so I got in. After talking about everything I'm dealing with, depression, fatigue (still), weight gain, and most of all my body hurts! Mostly just my legs but truly my entire back even into my arms and down my legs often hurt every night. She went ahead and upped my anti-depressant (I was on a low dose anyway), put me on thyroid medication (apparently my specialist saying it was "back to normal" was only a partial truth, it's still really borderline to not being ok), and was supposed to prescribe me a different muscle relaxer that didn't make me so tired but I haven't received that yet. I'm not too worried about that part though I do need to call soon before I forget. It's really too soon to tell but I hope these changes make a big difference. She really believes they will so I've got my fingers crossed. The only thing I don't like is taking the thyroid medication on an empty stomach. I'm afraid to even drink coffee because I put creamer in it and can't find anywhere that tells me if that's okay or not. So water it is for at least the first half hour after I take it. Not horrible I suppose, we can all use more water!

When does it end??

I hurt. A lot. It's mostly only bad at night but starting last night and carrying into the entire day today my lower back and legs have hurt so bad I keep finding myself in tears. Right now is no exception. I went to the doctor recently and they gave me muscle relaxers which have done no good however I'm in enough pain right now I'm willing to take it just to fall asleep. I am moving this weekend and have a lot of other things on my plate right now and yet I can't focus long enough to get anything accomplished.

I have spent the last 13 months trying so hard to be strong and for the first 48 weeks I at least knew there was an end in sight. Right now I have no idea if or when these side effects will completely go away. My energy level seems to keep increasing though I know the fatigue is not completely gone. As an example I was awake for a total of 11 hours the other day out and about doing thins and slept for 13 hours as a result. This is much better than the 4-6 hours I used to manage at the beginning of treatment but still not where I'd like to be. The nausea seems to have left for good (or so I hope) but these body aches are killing me!! I was starting to have more frequent headaches too but I honestly don't think that has anything to do with treatment. However I am starting to wonder if the fact that my upper and inner thighs were my main injection point for the entire length of treatment has done something to my nerves. My lower back into my upper legs are what hurt the most though my entire back, arms, and the rest of my legs will often hurt the later it gets at night.

I find that walking or standing hurts less than sitting or laying down. It's also odd to me that while the body and/or muscle aches (whatever they truly are) continue to get worse post-treatment. The constant up and down of post-treatment side effects is really fucking annoying. Ultimately everything but the body aches are improving but even then the fatigue comes and goes and the nausea was hit or miss for awhile but I'm trying to stay positive that those will continue to decline. The body aches are still a mystery why are they getting worse and why is nothing helping? How can I be expected to go back to work, even part time, when I hurt like this? I thought I was ready and even told my doctor I think I could work 20-30 hours given my fatigue improving but after the last 24 hours I really question my ability to do anything.

Tomorrow I'm going to call the doctor and get another appointment. Something must be done about this. The only thing that seems to help are hot baths and that's only while I'm in the tub. If I could live in a hot bubble bath for the rest of my life I'd be just fine. Unfortunately that's not very realistic and just seems kind of weird. Enough from me. Goodnight.

Still unpredictable

I really started to think I had the new routine of post-treatment side effects under control. Ha, I know better than that! Since I last updated the fatigue has been better, I still feel the need to crash out in the middle of the day about once or twice a week but not EVERY SINGLE DAY so I was content with that. As long as I stayed on a regular dose of ibuprofen I seemed to be able to tolerate the pain of the muscle and body aches fairly well too.

This week has felt very different. I'm far more tired than I have been lately. Last night I slept over eight hours (that's pretty unheard of for me right now) and still took a three hour nap today. Since I woke up the first time I've showered had plenty of coffee and water, had food, and still... just TIRED! I have a group of girls I like to meet up with on Tuesdays and I haven't gone the last two weeks so I'm really excited to go tonight and yet all I *really* want to do is sleep.

So many people have tried to offer suggestions on ways to try to help me and I just don't think they can fully comprehend just how hard dealing with chronic fatigue is. Even all my doctors, from my specialist to my chiropractor have told me there is just no way for people to understand what I'm going through unless they've dealt with it first hand or treat patients regularly for it (like they do). It's not like I'm not listening either, if something sounds doable I will give it a shot, but really there is no magic way to rid myself of these side effects. I guess I just need to let them run their course and hope that day comes sooner than later!

a little more awake, a lot more sore

Upside: The last few days I've had a bit more energy, not a ton, but more. For example, I haven't taken a nap in the middle of the day for days now! Progress!! I'm still pretty damn tired but progress is progress and I'll take it!

Downside: My body HURTS!!! My whole back (from head to lower back) is very sore during the day and come evening/night my legs start acting up too. My arms are also really tense when I wake up in the mornings but tend to get better after an hour or so. Right now my legs are so sore I can't even imagine going to sleep but I am thoroughly exhausted and ready for sleep!

Mental focus seems hit or miss, I wish I could say that has gotten better. Some days I think I'm doing great, other days I can't concentrate to save my life! Today would be the latter.  Yep, I don't know what else to say... goodnight.

Hypothyroidism

My Specialist just called. My viral load is still negative (YAY!!!) however my thyroid is under-active which is explaining the major fatigue, body aches, and probably quite a few other symptoms. He said the last time they tested my thyroid levels (Oct) they were "normal" however I recall seeing my naturopath in Nov and after reviewing my results she told me that they were not good but still in an acceptable range to a doctor of western medicine and therefore they wouldn't do anything about it. Looks like she was right! At this point he is not having me take action just yet. He said since it is a side effect of treatment my levels may very well return to normal. So, Feb 27th I will be going back for blood work and we will take it from there. I actually feel at ease knowing this. I found it maddening to feel more tired and in more pain AFTER treatment had ended than while I was on treatment. Thank god there is a reason for all of this. I really started to feel like I was going insane.

Side Effects

For anybody interested in better understanding the general side effects of the type of interferon I was taking, here is a link to the Mayo Clinic. http://www.mayoclinic.com/health/drug-information/DR602541/DSECTION=side%2Deffects

Doctor Visit and Disability

Monday at 3pm I went for my second to last visit with my GI specialist. To date, all blood work has come back exactly as they need it to and on July 23rd I will see him for hopefully the last time, at least for 19 years when he says I should come back for a colonoscopy... thanks doc! ;)

If my viral load is still undetectable 6 months after treatment I will be considered CURED!!

Monday I felt extremely tired, disoriented and extremely sore. Yesterday I seemed fine and today I'm very achy and tired again. The doctor did inform me that the fatigue takes 1-3 months on average to completely go away. He thinks it would be good for me to take another month off work see how my body decided to bounce back and take it from there.

I talked to Long Term Disability today. My case manager said he will request the notes from Monday's visit and likely just follow up with me sometime in mid-Feb to see how I'm doing. As much as I'd like to think I would just bounce right back and be ready to return to work I'm glad that my doctor and disability case manager alike are not trying to rush this process. It's going to take as long as it's going to take which is something I'm still coming to terms with.

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!

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!!

two and a half weeks to go!

I can't believe treatment will be over on Jan 20th!! In my head it seems like it's never going to get here but in reality it'll be here in a blink of an eye. Plus I only have two more shots to take!! I keep fantasizing that the fatigue will magically disappear the second treatment is over but even the long term disability rep told me that's not likely to happen. As scared as I am to return to the real world I'm really excited to get on with my life! Having this much needed time off work to take care of myself mentally, physically, and in turn spiritually, has been the best thing that could have ever happened to me! It has been really hard and I've had to work through a lot of things but I'm almost done and that still amazes me!! Not much else to report at this point, I'm just extremely tired (as always) and counting the days until I am done!

Only 3 shots to go!

When I think of it this way it's amazing how quickly it will be over. Jan 13th is my last shot and Jan 20th is the last time I have to take these damn pills. I'M SO EXCITED!!

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!

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 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!

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!!

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!

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!!! :)

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!

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!

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.