Thursday was a washout day for me. Jimmy had classes and I had big plans to take the shuttle down to the strip. I thought I'd also find a place to get my hair cut. None of that happened. All of the drugs won the day over and I spent Thursday in bed with a beautiful view of the Mountains. After Jimmy's class we ordered up room service and back to bed I went.
Friday was pretty cool. I felt somewhat better and I made it through my class. I took a Torch work class. Lampwork - turning glass rods into ornaments and sculptures. It's really cool stuff! I have to say that even while I felt like shit and I had never worked on a torch before, I was the best in the class! lol
After the class we took a stroll through the exhibit floor and wound up buying the torch that I had been working with. Man is it cool!
So I guess I'm hooked on a new art. We'll see how good I can get at it.
On a not so good note I think Riba rage is finding me more and more now. I'm getting periods of time that everything is pissing me off. It happens mostly when I'm getting tired and uncomfortable. I feel like shit and then all of a sudden I start to feel like a caged cat and every little thing starts to really aggravate me. I feel like I can explode at the next person who bumps into me and keeps going. I scream in my head. But for now I think that I'm controlling it. I think I am. On the outside I probably look like a real bitch!
I'm starting the Zoloft when I get home. Now I know that I need it.
We came back to the room last night and ordered room service again. The restaurants where all packed and the waiting was not anything that I could handle.
Took my Inerferon and zonked right out.
Woke up this morning and I know that this will have to be a slow moving day. My body aches and fatigue will be at my side all day. I might make it downstairs for my hair cut today and maybe a slow stroll through the exhibit center. Other than that I'll be here in the room enjoying the Mountains again. Jimmy has a class until 4:00, so maybe if I can rest up we can do something this evening.
Well, that's it for now. I don't feel too Ducky but at least I'm in a very nice place while I feel like hell!
Maybe tomorrow will bring me more strength for our last day here.
We fly home on Monday....
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Life and times of Dealing with a Dragon named Hep C
I found that Hep C has a nick name.
The Sleeping Dragon.
It's fitting.... Strange thing is that I've always loved Dragons.
I guess I never could have imagined that I'd have one of my own.
About Me
- Laurie
- I'm a 42 year old Mother of 5. 3 of my own and 2 of my Husbands. My 3 are 13, 17 and 21. His are 22 and 26. We have 3 boys and 2 girls. In my life I've had 17 surgeries, a tatoo and a blood transfussion. So your guess is as good as mine as to where I contracted Hep C. I do not believe it was from the tat. The gentleman that did the art was very careful with sterile tools. But who knows. I was diagnosed with Hep C on March 22, 2007. Geno type 1b with a viral load of almost 5 million. And now I turn the corner and yet a new path lay ahead of me...... A new Journey begins
Blog Archive
Hero's
8 comments:
Good Morning Laurie, Dorene here, I am so happy that I found your blog, I have never been on a blog before so need to figure out how I can communicate with you. I appreciate you sharing on this site, I have been having similar experiences to yours however I do not have a supportive
Nurse like you who gives me information. It seems as if the trial doc just wants to take my information and give nothing in return so when the muscle aches started he just said "really?" I will try to figure out how to join this blog so I can communicate with you
Thank you again for this blog.
Good Morning, I was wondering if anyone has given you sugestions for what to do about your hair. Mine is coming out at the roots and is also breaking off as the texture has changed. I know it is the least of my problems with the Hep C however it is very difficult to watch it come out by the handful. Everyone tells me to cut my shoulder length hair but I hesitate to do that as it is coming out at the roots so I don't think a shorter length will help, I hope I am wrong and someone else will have a suggestion. Like you I think that the part that depresses people is feeling ill every day. Yes there are good days, like right before I take my weekly shot, I feel good compared to the 6 days before but then I have to take the shot. I know I should be positive about the fact that I am getting good results however when I think of 38 more weeks of this I get depressed.
I appreciate anything you can share with me, I signed up with google so hopefully we can communicate if you feel up to it.
Dorene
:) Hi Dorene!
Muscle aches and hair falling out/breaking off....yep sounds very familar!
For the aches and major pains, the only thing that Doc was able to tell me was to take regular strength tylenol and if that doesn't cut it when it's really bad I can throw 1 Ibuprofen in with the Tylenol. I can't do that very often though because Ibuprofen is bad for the liver. When it comes down to surviving the pains when they are too much, I take the Ibuprofen. Other wise I take the Tylenol. Regular strength because I can't take more than 2000 mg's a day. My friend Iris told me about the Regular strength and being able to take it more throughout the day with out hitting the 2000 mgs too fast.
For hair....hummm....I wish I knew. I've tried all sorts of stuff and nothing seems to help it. It just keeps breaking off and falling out.Best thing I could find that helped at all is Garnier Fructis Leave-in Conditioner for Color treated or permed hair. Even using the regular rinse out condition and leaving it in overnight helps. But still I contine to loose it.
My hair is almost waist length and I'm going today to cut it off. I'm hoping that if it's shorter it won't look like I've lost so much.
My Doc says that cutting won't help really. She say's it's cell death. But with my hair long it's really starting to look like hell so off it goes. I'm going down stairs in the resort to explain whats going on and I'll have her cut it whatever way she thinks it'll look good. At this point it just doesn't matter to me because it looks like shit anyway and I'm loosing it no matter what.
It will grow back.....that's what counts.
You can't look at this as 38 more to go. You almost have to look at the 10 weeks that you've done and say to yourself "10 weeks already!". If I sit and think of it any other way, I might not make it.
I'm starting A.D.s on Tuesday. Zoloft. Mentally I'm still strong...but I'm getting aggravated too easily and I hate it. Once I get past being aggravated, I feel terrible. I feel guilty for feeling so cross at such minor things.
Stay strong Dorene. We can make it through this. It sucks...but as my friends Terry, Iris and Tea have said "It's doable"
That reminds me, if you have a chance, go to Tea's blog - teastarwitch.blogspot.com
The short cut is also under my "Hero's" on the front page to the right of the screen. She completed 72 weeks of tx and the info on her blogs is priceless. She's also an awesome writer.
Take care and stay in touch. :)
((Hugs))
Laurie
Laurie, thank you so much for your words of comfort, I also had very long hair when I started this however it started to look pretty straggly so I cut it, it continues to fall out. I can't bring myself to cut it above my shoulders so for now I am conditioning and treating it gently. The doc says I won't lose it all and that most people can't tell but I could tell so cutting it did help it look a lot better. Thank you for telling me about your friends blog. Until I found your blog I did not know anyone on this same trial. From reading Roche's site I found that this is going on all over the world I met people on the standard treatment but taking the X, Y and Z pills adds to the side effects. I do feel grateful that the sides are not as violent as I had feared. You are right about getting tired of being sick and today is the day after shot day so I always seem to forget that "this too shall pass" I will feel better after the dreaded day 4 (when the interferon peaks) and will have a couple of ok days which now feel great to me. The only good thing is that my doctor has warned me the meds would make me very anxious so he advised me to go on A/D's before treatment started. As anxious as I have become I wonder what I would be like without them ha ha. I guess it is all our perspective. Also, like you said, I seem to get angry over small things and snap at my poor husband more than normal. I hope you have a good day tomorrow
Thank you so much you have really helped me
Hi Laurie, glad you're taking it easy! Please don't just let the stylist do what she wants to your hair! I found that a series of progressively shorter, layered hair cuts kept anyone from noticing. (You too, Dorene, if your hair is thin at the top and long, I don't think that's a good thing.)
Have fun, have a safe flight home!
Dorene,
For me day 4 after a shot shot is sometimes the worst! Day 1 and 2 are ruff also, but theres something about the day 4 whammy thats a killer sometimes.
I do get a little break late on day 5, 6 and most of 7 until I have to take the shot again.
I've had A.D.s for a while now but I just couldn't start taking them before I felt that I needed them. I hated the idea of taking more pills. I'm already at about 91 pills a week and at times up to 120 including tylenol. Tuesday I'll start the Zoloft....I just can't stand myself right now. I know it'll take a couple of weeks to build up, I think I can stop myself from biting anyones head off for that long.
The sides are not so violent for me now....a couple of weeks ago it got pretty scary. Now that I'm on Procrit and Nuepogen I feel much better. Now it's just body aches/pain, lots of fatigue, nausea, skin and hair trouble and major brain fog (retardation). And of course the occasional "What the hell was that" kind of thing.
Thank you :) for staying in touch, we can help each other. :)
Hope your day is wonderful
((Hugs))
Laurie
Iris,
The stylist did a nice cut. She didn't want to shock me so she cut it just above my shoulders in longer layers. Gave me a style that I can wear straight (looks businessy) or curly (a little sassy).
It'll take me a while to get used to it no matter how it was cut. But I think it's workable.
One more day left in Vegas :(
Hope tx will let me enjoy it.
How are you doing? I hope that all is well at the home front :) I'm glad that you are still visiting, I would miss you so much otherwise.
Take care my friend and enjoy.
((Hugs))
Love
Laurie
Hi thank you so much for keeping in touch. About the Procrit and neupogen, what are they for? When I asked my doctor if there was anything they could give me for my low platelet level 54 or for the lack of energy he said no. I thought it was because I was on a trial and that the trial sponsor would not allow me medicine. Now I am not so sure, if you are allowed to take something to help and if we are both on Roche trial Prodrug with the Standard Treatment then I am confused as to why my doctor said there wasn't anything I could take
I have done what someone else on here suggested, been slowly cutting my hair as it began to look straggly, of course it is going to fall out, all I can do is baby it as much as possible. I just used a product Kerastase Vita Ciment and it made my hair feel more like hair and less like straw, I know it is the least of my worries however when my hair looks bad I feel worse. Not sure if you got one of my earlier comments but I just read that the Interferon takes 80 hours to reach its peak so that would explain the bad day 4. I read that in "Living with Hepatitis" There are many books out there and they have been helpful
I hope you have had a nice vacation, would love to see your new haircut.
Dorene
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