Saturday, November 10, 2012

Health Update and other stuff

I'm pleased to announce I have almost no side effects left from treatment! The only things that are still an issue is hypothyroidism and even more severe acid reflux than ever before, both of which have been and are continuing to be treated by medication.

After being forced to quit my job I no longer had medical insurance to cover that doctors visit and labs, costing me hundreds of dollars. The positive to quitting my job and working part time: it's allowed me to go to school and make a better future for myself than I had before. The cons: I barely have enough money to pay my rent and household bills.

On Oct 13th I ended up going to the hospital because of symptoms that felt exactly like a heart attack. After five hours in the ER they diagnosed it as acid reflux which I still find odd, but after a follow up appointment with a doctor at ZoomCare (thank god they're only $105 a visit, that's much more affordable than what I paid last time I went to my doc) we believe it could be the fact that I had missed my thyroid pills here and there. It had been hard to take them consistently because of having such a hectic schedule. You have to take the pills on a completely empty stomach, meaning no food or drink (besides water) for at least three hours before you take it, and no food or drink for an hour after you take it. Yeah, I kept forgetting and sure enough even a week of not taking this medication can screw up your system for an entire month. I WISH SOMEONE WOULD HAVE STRESSED THE IMPORTANCE OF THIS WAYYY BEFORE NOW!! Not only that some days I would simply just forget. Seems silly but I still don't think my brain works quite right since treatment. I seem to forget things even right after they were talked about and can still get confused easily but the confusion isn't nearly as bad as it was during treatment.

I was able to set up a payment plan for my last doctor visit with my specialist, which totaled almost $700. The ER bills however, keep trickling in. So far I'm up to almost $4,000 on that alone. This is just ridiculous. I can't afford to pay any more than the $100 a month I already agreed on for the doctor visit, I have no idea how/when I'll be able to start paying for anything else. Not to mention every time I get sick I'm going to ZoomCare which is $105 a pop. I have to stay on top of my health and take care of things as they come up but I'm at the point now where I literally can't afford to.

Luckily I've set up a good plan to make sure I take my pills everyday and since the ER visit I have been successful (yay!) let's hope I can keep it up!

Other positives is that I've started working out again and eating better (for the most part) and while the weight hasn't really dropped that I gained during treatment I feel confident that I will get there!

I have swallowed my pride and created a Facebook page to ask for help getting my medical bills paid down: https://www.facebook.com/hcvgirl/ If anybody is able to give even a dollar, it would help so much! If you're reading this and want to donate please do so by going to Paypal, I can be found under isisraine1@gmail.com. Thank you all for your continued love and support. I can't tell you how much it has meant to me down this very long road. Even with the debt I've accumulated it has been was worth it, I have my life back! 


Monday, July 23, 2012

I'm HEP C FREE!!

Blood work for Thyroid check up and final results for the Hep C were done on the 16th and the results are in... my thyroid is "normal" and I'M HEP C FREE!!! It's been a hard long road, but completely worth it!! I can't thank any of you enough for the love and encouragement through all of this!

Tuesday, March 13, 2012

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!

Wednesday, March 7, 2012

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.

Tuesday, February 21, 2012

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!

Monday, February 6, 2012

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.

Thursday, January 26, 2012

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

Wednesday, January 25, 2012

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.

Monday, January 23, 2012

This seems a little odd...

Here it is, a little over 48 hours since my last pills and over a week since my last shot and for some reason I feel absolutely horrible! I am dizzy, my body aches, and my stomach hurts. WTF?! Could it be that I know subconsciously this is how I "should" feel right now? Every Sunday/Monday for the last eleven months it has been guaranteed that I will not feel well but I honestly thought I wouldn't feel that way right now. Makes me wonder what I actually did expect and to be honest I have no idea. At least I know it will start getting better one of these days, hopefully my specialist can give me some idea of what that timeline might look like. Alright I suppose it is time to attempt sleep yet again. I've taken ibuprofen which hasn't helped my body aches at all but I'm going to attempt to believe it will kick in any moment and hopefully doze off into peaceful sleep.

Friday, January 20, 2012

It's been 344 days, thank god it's finally OVER!

From the first interferon shot to the final ribavirin pills I took tonight, treatment has lasted a total of 344 days!! A medical treatment full of harsh drugs, harsh side effects, and a lot of physical and emotional pain. That's 48 shots and 1,720 pills. Not to mention the daily anti-depressents, heartburn medication, endless amounts of ibuprofen or aleve and any other supplements such as multivitamins, iron pills, etc. The most trying eleven months of my entire life, hands down. I can't believe it's over!! I blood work done and see my specialist on Monday at 3pm. Assuming he tells me my results still look good I won't see him again for approximately 6 months. what a life changing event that is taking place. When I wake up in the morning I no longer have to think about treatment. I have to remember to ask the doctor how quickly he thinks the fatigue will start to subside if there is one side effect that has kicked my ass more than any that would be it. I would love to get on a regular sleeping schedule, go to the gym regularly and be able to work again! I look forward to returning to some form of normal life within the next couple of weeks to a month. On that note I can barely keep my eyes open and my body is sore and tired so I'm headed to bed... more after the doctor's visit on Monday!

Sunday, January 15, 2012

body aches, body aches...

I can't help but wonder if this is the universes way of fucking with me? I have five days to go. FIVE DAYS! And tonight the body aches and headache have set in full force just like they used to. It happens every Sunday to some extent and maybe after 11 months I'm just used to it, but about an hour ago or so I started hurting and it's taking over my whole body. It's exactly the "flu like symptoms" they warn you about when discussing treatment. It feels ridiculous to even post about this seeing how treatment is SO close to being over but for the sake of having a blog and doing what I do, I felt the need to share. Besides, I fucking hurt and no matter what friends or family I complain to, not a single one of them can make me feel any better physically so I'll just vent away here! Time to take a bath and listen to some music, maybe curl up on the couch and just pass out. Somehow sleeping on my couch seems like a better idea than my bed at the moment, even with the absence of a television in my living room. Thank god this is almost over!

Saturday, January 14, 2012

My Final Shot

Around 11:30pm 1/13/20012 I took what will hopefully be my last interferon shot, EVER! It's funny to me how easy it is to give myself shots now however eleven months ago I was more scared of giving myself a shot than the side effects. Of course I can see the underlying fear of not knowing what was going to happen probably played into that more than I realized at the time, but still.

Now the fear becomes going back into the real world. On the last day of treatment (Jan 20th) I will have been out of work exactly seven months. That is a trip! I feel so incapable of working it's bizarre! I'm doing my best to stay positive and remember that as my energy returns reentering the working world will not feel as difficult as I'm making it in my head. Today if I were to try to work a full eight hours I would die, been there, done that, we know this. Hopefully in a few weeks that will no longer be the case. I'm also excited to get back to the gym and hopefully have an appetite again which will help me eat more regularly. I have a new lease on life and I intend to use it to the fullest!

I still intend to update this blog at least for a little while to document how quickly side effects leave, or if they stick around, etc... While I won't have a truly clean bill of health for six more months I cannot express how excited I am to have the chapter of treatment over with. I don't take any of this for granted, I do know how blessed I am to have the chance to get well, but goddamn after the stress of nausea, fatigue, and muscle aches on top of all the insurance/work bullshit I've had to deal with over the last year I am very happy to move on to the next adventure!

Friday, January 6, 2012

Only one more to go!!!

About a half hour ago I took my second to last shot. I can't even believe it. Crazy! The first month gave me so much anxiety. I hate needles, I still do, but back then I would work myself into such a panic and have a complete melt down before I even gave myself the shot. It was hell!! I don't know that it was the needles so much as knowing the side effects were coming. They were so intense especially at first. Now it seems so common place that I'm not even sure what I'll do with myself when I start feeling better. I'm so excited but almost don't believe it'll happen. It's a weird emotional and psychological place to be in I'll tell you that much!

I experienced a bit of nausea today. It was pretty bad however it didn't last but a couple of hours so that was good. When it comes to this stuff I have learned to turn it into a positive as quickly as possible! I'm still super exhausted. I walked a good two miles today, maybe slightly more to run some errands. I intended to catch the bus but I kept missing it by mere seconds and it was so wet and cold out I figured I'd fare better walking than sitting at a bus stop. Not so sure about that now. I came home and slept for two hours just to wake up feeling sick. I chatted with a few friends online, contemplated cleaning my house but just zoned out instead before taking my shot. Now it's time to call it a night (yet again) and hopefully have enough motivation to get some house work done in the morning. Having zero energy sucks!! Thank god this won't last too much longer!!

Wednesday, January 4, 2012

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!