Changes in the way I live

Miscellaneous and Personal Stuff I Must Share
1

Most of you know I have Hepatitis C. I wanted to post something along the lines of the “Ask the ________” about this, but after asking a friends advice thought better of it.

So I decided to post about the changes this disease has brought into my life. Not all of them are bad.

I spend a lot of time learning about this disease now. When I first found out I had it I didn’t bother to learn much. After all I was different, I was going to beat it without any problem. It was just going to go away. I was going to be cured . NOT !

I went through two years of interferon therapy. I learned to give myself the shots. Going to the doctor 3 times a week for a shot made no sense to me. So I did it.

Of course I relaped after treatment stoped. It happens. Now I am waiting to start the newer Combo treatments. Which sound like no fun at all.

I’ve learned to clean up even the littlest bit of blood from cuts ect. with bleach, because the virus can live up to 72 hours outside the body, and is spread by blood.

I don’t have to share a razor with anyone now. It’s too dangerous. And I dip my razors in bleach now after I use them too. Just in case.

I try to drink at least a half gallon of water a day now, the doctors want me to down a gallon, but I haven’t gotten there yet. I’m working on it.

I’ve learned how to deal with being treated like a leper by some folks who just don’t care to learn about the disease.
It is not spread by casual contact ! You can hug a Hepper ! In fact I recommend it ! We are also kissable.

It is hard knowing your life may be cut short by something you have because of something stupid you did years ago, but that’s how it is in my case. It is harder knowing there are people who are dying from this who did nothing wrong at all, like chilren who were born before 1991 who needed transfusions. And people who needed transfusions for surgery ect. That part makes me angry ! People who simply got their ears pierced ! Veterns who had to have surgery due to wounds recived in combat. It’s not right !

Oops didn’t mean to rant.

If you want to learn about the disease it’s self you can go to the site in my sig line, if you want to ask questions about how it has affected me, ask away.

2

Kudos to you for learning all you can about this disease and taking control of it. I really don’t know much about it - can it be cured or only controlled? Either way, it’s a credit to you that you are taking so many positive steps towards curing/controlling it.

I have to admit that I had to read you OP twice because all I got out of it the first time was “a GALLON? They want her to drink a GALLON of water? She’ll float away!” (this coming from someone who maybe drinks a glass or two a day and can’t conceive of drinking a whole gallon of water in a week much less a day :))

3

I’ve always thought that the harder you hold on to life, the better or worse it gets. Depending upon your outlook.

I should have died a long time ago, three times over. But I’m still kicking. And as long as I’ve got that spark, it’ll still be worth it. Ya gotta work to keep it. But you get outta life what you put into it.

You’ve got a lot of love in your heart. A lot of love to give. And if people treat you like a pariah it’s their own damn loss. Whatever you do, don’t get bitter. It’s just not worth it. Bitterness only spawns more bitterness.

Okay, I’ve gone way off track. And I’m giving encouragement to somebody who probably needs it less than I do. But I wanted to say something, and this was the best I could come up with, cliche though it may be.

And yes, it’s obvious that you can kiss a hepper, but it seems some people are still a bit doubtful of that. Idiots. Ayesha, do you want me to help ya prove it to 'em? C’mon! One time show, we’ll even charge for tickets!

::: ducking and running:::

4

Minxmom,

LOL, yes, they want me to drink a gallon a day. I don’t think a half gallon is too bad for a person who always said “Water, you want me to drink water ? Are you insane ?Fish F%^& in water, I’m not drinking it !”

No there is no cure yet. There are people who have sustained remissions after treatment, and there are people who are carriers who never develope the disease it’s self.
But research is on going and hopefully one day a cure will be found.

I do know that now people are started on the combo treatment which is an anti-viral along with the interferon, because so many people relapsed after interferon alone.

5

FreakFreely,

You made me :o , Believe me, I’m holding on ! And intend to fight this thing as long as there is breath in my body !

It is only people who are too stupid to want to learn about this disease who treat Heppers badly. I’ve made it a point to face them down about it. I may not be able to change the world, but before I’m done I hope to be able to say I helped open at least one persons eyes to the facts about this disease.

Too many people who have it feel like they have to hide because of the connection to drugs. Too many times that is the first thing people think of when they hear Hep C. It shouldn’t matter how we got it, what should matter is doing something about it.

I’ll climb off my soapbox now.

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That’s good Ayesha. And like I said, there probably wasn’t any need for what I posted. I did it on an impulse. But I would just like to say, “Ayesha, you RULE!!!” And “You can’t kill all the assholes in the world. There aren’t enough bullets.”

Now, how bout that kiss?

7

Hon, you’ll have to settle for a cyber kiss. All my real ones are saved for the LIONsob, have been for years. Here ya go.

::smooooooch::

8

No question, dear, just a pat on the back!

9

LIONsob? Sounds like a european car.

::: ducks and runs again:::

Cripes! My legs are getting tired. I’ve gotta stop jibing people.

10

As someone who had the joy of experiencing Hep A when he was a child, I can say that you have my full emotional support and lots of hugs. I have no idea how bad it gets for you, but I think I have a glimmer. I do hope that the combo drugs really help you. Oh for the future where nanotech can be released to just eat the damn virii.
Oh, and look at it this way, the gallon of water is so that the virii can die in the fluid they deserve to drown in. :slight_smile:

11

Ahhh, beatle, you are one of the good ones ! You have never acted stupid about this, even when you met me IRL. For that I thank you. In fact none of the Dopers I’ve met IRL have been anything less than wonderful to me.

FreakFreely, you make me laugh !

Narile, The worst thing I deal with right now is the overwhelming tiredness, and the flu like symtoms that come and go.

12

I must confess ignorance :o - I don’t know much about Hep C. I’m not really sure why, I usually keep abreast of such issues, but for some reason this one has not grabbed my attention.

Could someone out there give me some basic facts, like comunicability, symptoms, etc.?

And please, in honor of Ayesha’s desire not to start an “ask the …” thread, could whoever responds please email me at my edress in my profile? If no one responds, I will definitely do some research myself.

Thanks, Ayesha, for making me focus on this, and please don’t take offense for partially hijacking your thread. I mean none.

V.

13

SuaSponte,

If you want to learn more about the disease why not click on the link in my sig line ? That site is user friendly and has lots of info on it.

I don’t think you hijacked the thread, the only reason I didn’t start this as a Ask the Hepper thread is because some folks might have seen it as giving medical advice. I don’t even want to open that can of worms. All the information you could want, at least at first, can be found at Hepatitis-Central.

14

Because I am apparently blind. Thankee much, I’ll do it now.

V.

15

Wow, Ayesha, count me among the fortunate ignorant ones who didn’t know much of anything about this disease. Thanks for removing a little bit more of my Ignorance.

If anyone can beat this disease back, stomp it into line and keep it there, it’s you. You keep that chin up, your attitude intact and keep slugging. I’m so grateful that you have your wonderful, devoted man right there beside you.

Gotta say the half gallon of water thing stunned me. I’ve honestly tried that healthy “8 full glasses of water a day” but spent way too much time in desperate search of a bathroom.

Wishing you all the best,
Veb

16

Thanks Ayesha. When the Muffin invasion begins, you will be one of the few who are spared.

17

Ayesha, my aunt has both Hep C and MS. I’m glad you’re trying to spread the word and educate people. Keep it up. :slight_smile:
– Sylence

18

Congratulations, Ayesha, on your marvelous ability to maintain a positive approach. I’m sure that you have your down times, but you sure are one strong woman. I remember your celebration at the end of your interferon treatments and your pain when you told us IT was back.

Your honest discussion of your situation and your efforts to help educate the public can’t help make a difference - a life saving difference.

19

Veb, Thank you, if you had any idea how much I respect you, you would understand whi I consider what you said high praise indeed.

FreakFreely, Yea !

Sylence, That was the idea, after all, I can’t rightly bitch about people not speaking out if I don’t.

Thank you Old Broad. I hope this makes a lot of people decide to be tested. This isn’t something doctors usually test for automatically.

The only reason we found out I have it is because some tests that were done for other reasons showed abnormal liver enzyme levels. Thats when they looked for Hep. I could have had this for 22 years, maybe more.

Just another bit of information, most Heppers call this disease The Dragon, because it hides , sleeps until it starts damaging your liver. And like a dragon it’s damn hard to kill.

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If anyone can kill a dragon, it’s you.