I Survived!

Today, at 10 PM EST, I take my very last dose of Ribavirin and finish my treatment for Hepatitis C. They say time flies when you are having fun. I can now state, from experience, that the opposite is also true; time crawls when you are not having the least bit of fun. 

This has been the longest almost year of my life. I have gained weight, lost weight and gained it back again. I have broken out in several rashes and had the worst acne of my life. I have woken up in the middle of the night soaking wet from sweating and freezing. I have been beyond tired; I have felt hung-over despite my total lack of drinking. I have been in pain. My hair has fallen out. I have had several attacks of all encompassing rage, and I have lost most of my motivation to do anything even remotely fun. In short, this year has just been a bucket of fun.

But I survived. It is over. My weight will stabilize, my skin will calm down, the fevers will stop, my energy will return, the aches and pains will lessen, my happy, fun personality will make a comeback, I will care again and my hair will grow back. In short, I will be the person I have always been. A person I recognize.

The diagnosis of this disease was a tough thing to swallow. I spent about three months crying; feeling tainted and convinced that I was going to die. I have my husband to thank for getting me through it, and for not letting me feel too bad for myself. He has a way of making me laugh even when I don't want to, which is annoying when I am mad at him, but pretty awesome when I am a crying mess. 

People have told me this entire time how strong I have been; but the truth is, I never would have made it through this without the family and friends who took me to doctor's appointments, gave me my shots, cleaned my house, hugged me, took care of me, made me laugh, loved me long-distance, supported and encouraged me.

The key to surviving treatment for Hepatitis C is not in the vitamins you take, or how much water you drink, or even how much rest you get. The key is to surround yourself with good people who will be there for you through every hard day and then celebrate with you when it ends.

Also, you'll need Super Grover. Everything is easier with a cuddly blue monster on your side.

Perks of Triple Therapy

As of Friday, August 02, I have 8 more weeks of treatment to go. My Dad calls it a drop in the bucket, and I suppose he is right compared to what I have already been through. However, if he were in my shoes, I am sure the prospect of 8 more injections of what is essentially poison, wouldn’t exactly thrill him. I am still testing negative, and at this point, my chances of being cured are very good.

Now that I am in the home stretch, I have had time to reflect on my treatment as a whole. I have realized that despite all the terrible side effects, treatment wasn’t all bad. In fact, there have actually been a few perks. Since most bloggers who talk about the side effects of triple therapy tend to focus on the negative (and as a result, scare the crap out of those who are starting treatment), I thought I would take the opposite approach and talk about the perks to being on triple therapy.

For the first 12 weeks, you have to eat the kind of foods most adults avoid; and you don’t have to feel guilty about it because you are actually helping your body by eating them. These foods include, but are not limited to: Bagels with an obscene amount of cream cheese, ice cream, chocolate, French fries, deluxe burgers, cheesecake, chocolate, and my personal favorite, cheese.

For the next part of treatment you get to experience weight loss, without trying. Once your 12 week gorge fest is over with, you will have gained a fair amount of weight. But fear not my friends, for that weight, and then some, is going to fall right off. It is going to disappear even if you attend a graduation party and gorge yourself on brownies. Because of this, you are going to need new pants; which, conveniently, is part of the next perk. (Men might not see this as much of a perk, sorry fellas.)

Losing weight and needing new pants means one thing: SHOPPING! Just like the first perk, gorging yourself on yummy food, you cannot feel guilty about this one either. After all, one can’t exactly go around with their pants falling down, unless they are a fifteen year old boy, and even that is not advisable.

Your hair will fall out. I know, at first this seems like a negative, but one day you will notice that it is not just the hair on your head falling out; your body hair is going too. Goodbye shaving, hello smooth skin.

Lastly, you have a built in excuse to take a nap, whenever the mood strikes. If someone has the nerve to question you, give them a full on guilt trip. Sleep is important when fighting a virus, ask Grandma.

So here I am, model thin, my legs smooth as a newborn’s bottom, having made it through almost every terrible side effect that this treatment can throw at me. I hope to be one of the last to receive triple therapy as there are new, less difficult, treatments on the horizon. But if you, or someone you know, are embarking on this journey, know that the end will come and nothing is ever as bad as you imagined it to be.

Week 12 Treatment Results and a Plea for Patience

01/29/13 

HEPATITIS C VIRUS RNA BY POLYMERASE CHAIN REACTION(PCR),

QUANTITATIVE, SERUM OR PLASMA

RESULT: HCV RNA NOT DETECTED

Does everyone know what this means? It means I am kicking ass and Taking names that what is means. As of January, 29th there is no trace of the Hepatitis C Virus in my blood!

(Pauses for cheers and applause)

Of course it’s not that easy. I still have 35 more weeks of treatment, and in that time the virus has to stay gone. If it is still gone 6 months after treatment ends then I am considered cured. That will happen. It is only a matter of time.

Since my last update, in which I balled my fists and declared that I was done with the pity party, I’ve totally intended on filling this blog with other things besides my Hep C updates, Things like:

• My college roommate is getting married and made me her maid of honor. (Turns out being in a wedding is more stressful to me then planning my own.)
• The other day some shoe salesman with a broken arm thought asking me “What happened?” was a totally appropriate conversation starter,
• I wanted to post my acceptance story in honor of national acceptance day which was January 20th
• And I have finished two new quilts

Clearly I have failed at all of this because these as hard as I am knocking Hep C out the meds are knocking me out. I am still so tired, I am winded and I ache. My brain has turned into that of a goldfish. I am swimming in circles; I have a five second memory. If I don’t do something the second I think of it; it just slips into oblivion until I make another lap.

The difference between this update in the last one is that now I know that none of that matters, because right now, this treatment is working. All these side effects have been worth it and I have to believe that what the doctors are saying is true: that it’s all downhill from here. I can see the light at the end of the tunnel folks and I am in a much better place.

I know this blog has meant something to people and that means the world to me. I have no intention of stopping. I hope, in time that I will feel good enough for regular updates again, until then I hope that you all can hang in there and that you have all like my Facebook page where I continue to post at least a little more regularly.

Self-Pity Is for Sissies

It’s been a long time since I have written here. That is because I have been stuck in my own head having a no holds barred, pity party. It’s been pretty epic, and by epic I mean whiney, self-serving and completely pointless.  It is also, for the most part, completely out of character.

I am not one for pity; not for myself, not for anyone else. I am not the friend you go to when you have a problem and you just want a hug, a glass of wine, and some reassuring drivel about how ‘everything happens for a reason’ and how ‘it is all part of some grand design or master plan’ and ‘everything will be okay in the end.’ The only helpful thing that comes out of that is the wine. No, I am the friend that you come to when you have a problem that you are interested in solving. You’ll get the wine, and the hug, but what you won’t get is the pity. Instead, I do my best to help you come up with a solution. I will, however, only do this once. If you come to me the next month with the same problem, which you have done nothing to improve, the best you’re gonna get from me is a “that sucks”. A lot of people find this harsh or unkind. My friends (at least the ones that have lasted) know that I am coming from a good place; that I care about them too much to stand by and be a cheerleader while they do nothing but wallow in self-pity. They also know, that most of the time, I employ the same tactics to myself.

While I have been dealt some tough hands in life, I've never really been one to take them lying down. I have always been stubborn and have taken on challenges with an “is that all you got?” attitude. When I was in third grade, I had a surgery which resulted in my legs being in casts from ankle to hip. I somehow managed to teach myself to walk around my house with these casts on; I found being carried or using a chair to be too annoying. Instead of wallowing in the fact that I couldn't move, I decided that figuring out how I could move was the best course of action. Exactly twice in my life, I have allowed self-pity to take over: once in high school when I moved schools and felt so isolated that instead of finding ways to make friends, I retreated into myself. I began cutting and was severely depressed until senior year when I decided I was over the bullshit, made some friends and had a pretty decent year. The second time is now. Well not right now, but it pretty much started after my diagnoses.

This treatment has been the absolute, hands down, most challenging thing that I have ever encountered. Not just because of the treatment itself, but because the longer it goes on, the more it has been exasperating the things that were already difficult in my life. I have gained weight because of the meds, which is problematic for me. For years I struggled with a bad body image; additionally, the extra weight is making it harder to move and so much easier to fall. My normal aches and pains have become more intense and almost constant, even resting I am in pain. My muscles are fatigued and weak; I can no longer get myself out of bed without a struggle or stand for longer than five minutes at a time. There is so much more that I care to list, but in short, it’s been a challenge. A challenge which I have buckled under at almost every turn. Instead of telling myself the usual: That it isn’t that bad, that things could be worse, that this is only temporary, and that I should just keep on keeping on; I have been thinking about how hard this is, how unfair, how long 48 weeks is, and how I just simply cannot do it anymore. I cry and I swear and I throw things.

I know what some of you are thinking; that seems like a perfectly reasonable reaction. Perhaps it is, but is it solving anything? Is it making the 48 weeks go by any faster or less miserably? No. I knew this, but still I wallowed. And then real shit starting happening in the world. Children were shot and killed in their school; girls with their whole lives ahead of them were being murdered, my friends were losing loved ones expectantly.

And that’s when I remembered, no matter how hard things are, it can get worse. What I am going through really pales and comparison to what is happening everyday to someone else. In fact, what I am going through means that there is hope; hope for a cure, hope that 48 weeks of misery means a lifetime of better health. And so I am climbing out of my self-pity hole. I am not going to settle for “I can’t” or “it’s too hard” anymore. I am not going to be that sad girl I was in high school. I am going to be that stubborn third grader. I am going to do everything I can do. No more lying around and doing nothing. I might have new limits, but there is still plenty I can do, and I am going to do it.

Yesterday I vacuumed the first floor, did the dishes, cooked two night worth of dinner, took a shower and called my best friend. Tonight I have quilting class and tomorrow I am blessed to be able to spend time with both my father and my grandmother. Next week is my last week of Invicek, which many consider the hardest part of treatment. I can’t wait to start eating better, and trying to get a simple workout routine in to build my muscles back up. From now on, treatment is not going to kick my ass. I am going to kill it. I am done with worthless, pointless, lazy self- pity.

I am Thankful.

this lovely quilt was given to me by a volunteer that I work with.

Every year, at Thanksgiving; my step-family gets in a big ‘ol circle, hold hands, says a prayer and then each person shares what we are thankful for. I used to dread this tradition because I could never seem to think of just the right thing to say, and I was a little shy (That side of my family is HUGE). Now, that I am older and I see that yet another family holiday is being turned into marketing scheme, a reason to spend money; I see the value in this little tradition. It’s important in an era of “I want” and “I need” to reflect on what you do have; and what you are thankful for.

I am thankful for:

• Health insurance which allows me to afford the drugs that will cure my Hepatitis C.
• My Daddy, who gives the best hugs in the whole wide world and who I will always call Daddy.
• Tommy, who can make me laugh, even while I am crying.
• My Seester because she sings me songs and sends my sad-face high fives when I am having a bad day.
• My big sister, who is my constant cheerleader and is coming over to help with laundry on Sunday, (bless her).
• My friends, who send me cards to cheer me up and always have my back, no matter what. (Shout out to Christy, Cathleen and Stephy for being particularly awesome.)
• My Momma, for being the emergency giver of rides, and the person who comes over when I am by myself .and experiencing crazy side effects.
• My job, because I have one and because I enjoy it.
• My co-workers and volunteers who have been especially supportive and thoughtful.
• Miss Taden for her I am so happy to see you smile, her nightly snuggles and her happy tail.

If I was never diagnosed with Hepatitis C, I would still be grateful for all these things; but I don’t think that I would really know just how grateful I was or how wonderful these things and people are. Even in the things that try to wreck us, or make us weak. There are blessings. You just have to know where to look.

I wish all of you a happy, healthy, safe and blessed Thanksgiving.

Getting Back Up is the Best Part

Tomorrow, I start treatment for Hepatitis C. I will be taking three drugs Telepriver, Interferon and Ribavirin. These drugs can come with some very nasty side effects. I can't say that I am not nervous, maybe even a little scared, but I am determined to beat this virus; and today, I stumbled across a video that reminded me of something I have always known, but sometimes in the face of fear, I forget. When you fall down, you get back up.

In the eternal words of Chumbawamba, "I get knocked down, but I get up again. You're never gonna keep me down." 

A New Diagnosis

When you take those vows on your wedding day, “for better or worse, in sickness and health” I think most people assume the same thing: that we will never be tested, that God, or the Universe, or Karma will be good to them, that their lives and the marriage will be happy and healthy and good. I know that it’s what I assumed. I never imagined that during our first year of marriage Tom and I would face challenges that we never expected, that we never saw coming.

Remember this post? Well as it turns out, my health symptoms were caused by my birth control, but not for the reasons I expected. After going to my doctor for extreme fatigue, which I feared was related to diabetes, I found out that I have Hepatitis C.

Hepatitis C is a disease caused by a virus that infects the liver. In time, it can lead to permanent liver damage as well as cirrhosis, liver cancer, and liver failure. Hepatitis C can go undiagnosed for years because it often shows no symptoms in the early stages and is not part of any routine blood testing. My doctors seem to believe that I contracted the disease shortly after I was born through, either by a transfusion or surgery. That’s almost thirty years. Twenty-five of which I had no symptoms. Once I started having symptoms, they were so vague that no diagnoses was made right away.

Right after my diagnosis, I was ashamed and I was angry. I was ashamed, because I thought that maybe somehow it was my fault. I thought that anyone that knew might judge me or think less of me for something that wasn’t even my fault. I was angry that the measures taken to save me so long ago might have hurt me. I was angry at the unfairness of it all. Why did it happen to me? Wasn't Cerebral Palsy enough? Had I not been poked, medicated and cut open enough for one lifetime? I cried a lot. One minute, I’d be fine, and then the next I would be sobbing because I wasn’t the same;I was diseased and my life was never going to be the same. Tom was awesome. He hugged me and told me he loved me. Upbeat from the beginning he said, “This is right now, but it is not forever.”

I remember thinking at one point that this must have been the way my parents felt after my diagnoses of Cerebral Palsy. They would get caught up in my smile, my laugh, my antics and then they would remember the doctor telling them that I might never walk, that I wouldn’t be like other little girls, that I might not go to college, or get married or have kids. They would wonder how people might perceive me, whether or not I would be accepted by other children, or if one day someone would see past the disability and fall in love with me.

That’s when I realized this diagnosis was just that, a diagnosis, one that needs treatment. There is no reason to be ashamed, no reason that it has to control or dictate what my life is going to be. In fact, just like with my Cerebral Palsy, I may be able to help other people going through a similar experience. So despite the fact that some days I am still ashamed, still think that this is unfair, I’ve decided to share my experience with this disease that effects 4 million people in the US. 

I start treatment for Hepatitis at the end of October. I have been told that treatment is difficult, and I am not sure what the next year might bring. My husband and family and friends comfort me and give me hope. They are so supportive. Without them, I would still be wallowing in self-pity and I never would have had the strength to write this.

I was born and fighter and I will die a fighter, but NOT from this disease. Let’s go. I’m ready.

If you want to learn more about Hepatitis C click here.