Dec support group meeting...

I had my support group meeting last night. It's just still 3 of us, but we all feel we still need it. S seems to be doing well. I don't know how she does it--working full time and watching her grandson on Tuesday evenings. R is having a lot of pain with his hip. Poor guy. He feels like the treatment was rough but it's nothing compared to his painful hip. I'm still doing OK. My hair is getting thicker.

Thankful...

Last year at this time, I was a mess. I had been diagnosed with Hepatitis C, genotype 3a. My viral load was low at 10000. I was gearing up for treatment to start in January 2009. My anxiety was awful. There were so many unknowns.

Fast forward to now. I've completed treatment and feel better than I have in years. I thought I was just tired from having young children. While they don't know for sure when I got it, the doctor thinks it was within the last 3 years. As of October, I'm still undetectable.

I'm so thankful for getting through treatment and, thus far, having good results. The treatment was no piece of cake with the depression being the worst. The fatigue was a close second. I have a totally different outlook on life now. I guess it could be "don't sweat the small stuff" outlook. I'm still on antidepressants and that might help with the outlook. I don't know nor do I care. What I do know is that I'm feeling great, I love my family and I feel good with where I am in life.

Hepatitis C opened up a whole other group to me. I met the Hep C nomads out of the UK. I have two friends locally with whom I meet once a month for support. I know that life is not to be taken for granted. I understand that bad things can happen for no reason and people are not to be judged for what ailment they might be dealing with. There's no room for bitterness. As the saying goes, "We all have our cross to bear."

So with that said, I want to say Happy Thanksgiving. May you find something in your life for which you can be grateful.

No news, good news.

There's not a lot of news with me right now. I'm still feeling energetic. I'm going to start volunteering 4 hours a week at the Centre Volunteers in Medicine clinic in town. They need a phlebotomist and since finding veins is one of the things I have to do in Nuclear Medicine, I can fit that need. My husband is not too thrilled with me because I will be drawing blood. I haven't been working hardly at all at the hospital and he's happy with that, too.

I got the H1N1 vaccine a couple of days ago. One child got vaccinated--now I need to get the other one vaccinated.

My hair is growing back in and getting its normal texture back. All other symptoms have gone away. Yay!

3 month PCR

I had my viral load drawn this week and it came back negative! So, in January I will have my 6 month PCR drawn, if that comes back negative, then I am cured! I'm very relieved right now!

My mom is in town for a few days. It was this time last year when I told her about the Hepatitis C. Wow. A year ago. I remember I had so much anxiety then. I wasn't on the Paxil and I was a wreck. I've since gone through 6 months of interferon and ribavirin and was a rapid responder.

I was supposed to get my blood drawn last week but the kids were sick and the weather turned yucky toward the end of the week so I will do it tomorrow. It's not the official one (that will be in another 3 months).

My spirit is still good and I feel great. I am coming down with a little cold right now, but otherwise, feeling great. I can't say I'm missing the ribavirin (no colds last spring!)!

it's been a while, huh?

Gosh, it's been a while since I've posted. Life is busy and I'm feeling great. I will get my 3 month PCR test this week. The doctor ordered it since all the Nomads get theirs drawn at 3 months post treatment.

My hair is getting a little thicker. My eyelashes don't look so weird anymore (no llama lashes) and my fingernails are back to their brittle selves. I didn't realize my nails were so paper-thin before. But, my skin feels great--no more dry skin. I really hope and pray the virus doesn't come back.

But, the best thing about all of this is my new attitude. OK, maybe the antidepressants help with it, but I do find the good in everyday now.

switched antidepressants

Most people lose weight while on treatment. I didn't. I gained weight and I think it was due to the antidepressants. For whatever reason, my G I doctor only prescribes Paxil or Zoloft to his patients. When I failed on the 10 mg dose of Paxil during treatment he referred me to a psychiatrist. My dose was bumped up to 20 mg. I have to say I felt really great on Paxil but the weight gain bothered me. I don't weigh a lot and most people think I look great. But, my clothes are a little tighter and my waist a little thicker. Yes, I'm vain but I'm also pratical. I don't want to buy new clothes. Besides, I like my old clothes.

So, I contacted my family practice doctor and he switched me to Celexa. I think the generic is citalopram. Anyway, I'm just a week into it and I hope to lose a couple of pounds one of these days. It does help that I feel like exercising and have the energy, to boot!

I still feel like it's a blessing that I went on the anti depressants in the first place. I'm much more "settled" in my soul. I'm a much better parent to my children. I don't get as irritated with my husband! I say to anyone contemplating treatment and you have a history of depression or it runs in your family, go on them. You can always come off the antidepressants when it's all over.

getting my life back to normal...

I'm feeling great. I spent 10 days in France (mostly in Paris) and walked all over the place. Our apartment was up two flights of stairs. I kept telling my sister that 3 months ago, I couldn't have walked up these steps. I wasn't breathless at all. Hooray! I feel better now than I did before treatment.

I will find out about SVR in January.

Liver enzymes back to normal!

I saw the doctor yesterday. All is well. My liver enzymes have returned to normal as well as my CBC. I'm no longer anemic! He will check my PCR in October and then again in January. If the viral load is still undetectable then, I'm cured!

I've learned so much about myself during this last year. I will try to savor each day. I realized I need antidepressants (at least for now) and I'm OK with it. I haven't felt this great in years. I'm a much more patient mom to my kids. The fatigue is almost all gone. I must start exercising regularly to lose the weight I put on. Life is great!

I had to work today and I had energy. I'm hoping all this will just be as blur when I'm old and gray(er).

Stll feeling great!

Well, it's been 3 weeks post treatment and I'm feeling great. I had a softball game last night and I could run like I used to. I will say that I was dog-tired after the game, though. I can't wait to start running and lose this belly that I got from the antidepressant.

I have a job interview today. It's not exactly the job I was wanting but the hours will be great. It's full time but no nights or weekends. And the guy mentioned that if my kids are sick, I would be able to stay home with them, no problem. I've often wondered what I will do once both kids are in school all day. We'll see. If it doesn't work out, I still have the one day a week gig at the hospital doing nuclear medicine. And, that might be enough. Honestly, after all this treatment, I was looking forward to not working with blood anymore. I trust that God has perfect timing and whatever happens is what's meant to be.

The main thing is that I'm feeling almost normal. It's so great. I'm able to concentrate better now, too. I'm so lucky I found out about Hep C and that I was able to undergo treatment. I'm still hoping to get the sustained viral response.

Congrats to Hep C Nomads!

This forum now has 1000 members! It's a great on-line resource for support and information regarding Hepatitis C. I know it helped me before and during treatment. I now get support through the post-treatment part.

It started out as a forum out of England but now has members from Australia to Mexico to the United States and Canada and other parts of Europe. If you are in need of support for Hepatitis C or are on the side lines helping a loved-one, then I would check it out.

There is hope

It's been over ten days since finishing treatment. I am starting to feel so much better. I'm still on antidepressants but my mood has improved so much. I'm interested in doing stuff around the house. There is hope. Hang in there if you are on treatment. You will feel better after you are done taking the medicines.

I'm sleeping so much better.
I have more energy.

Hooray!

hair thinning

Well, 4 days into post treatment and I'm sleeping better. I will meet with the doctor in late August to discuss weaning from the Paxil. I did notice this morning my hair was coming out as I put some stuff in it after my shower. I never had my hair come out during treatment.

I'm still breathless with stairs or if I'm walking too fast. I must start exercising at some point but right now, the thought makes me tired!

The riba rash is still there but I don't itch anymore.

That's all the update for now.

End of treatment

I got the results of my viral load for the end of treatment: still undetectable! However, my liver enzymes are still elevated and the doctor is puzzled by that. He will check that again in 4 weeks. I am sleeping better now that I'm not taking the ribavirin! Oh, I'm looking forward to feeling good again! Now, just hoping that I achieve the sustained viral response in 6 months...

Just four more...

Ribavirin pills to take and I will be finished with the 24 week treatment for Hepatitis C (genotype 3a). Unbelievable. I had my blood draw yesterday to check the viral load. I hope I'm still undetectable and that will mean in 6 months we'll check the viral load again. If the viral load is still undetectable, then I'm finished with this chapter in my life. I'll still try to keep the local support group going and still post on the Nomads site, but I will be able to resume normal activities again. I really, really, really want to start running again and I can't wait to enjoy a nice glass of wine with my meals again.

Some good that has come out of this as far as my diet goes: I managed to cut down on my caffeine intake. I know that has to be good for me. And like I've mentioned before the fact that I felt so much better on Paxil means that I probably need it.

I probably won't get to post for a couple of days. I'm taking my kids to upstate NY where my husband has been working this week. Dreading the drive because I'm tired. I'll make it, though.

It hurt, but it was the last one....

I had to work today at the hospital. It was a good day--not too busy that one never sits down, but busy enough that the day flew by. Just right.

And tonight---brace yourself--- was my last shot. And it hurt! My technique was awful. For the most part, the other 23 shots were a breeze, but tonight it bled and was painful. Let's just hope it's the last one I ever have to take.

Well, I'm tired. Better head to bed because the weekend is coming up and I need my energy!

I met with the local support group this evening. There are still only three of us. Tonight, Ron brought his wife. Ron and I have one shot left. He is genotype 1, so he is coming up on a year. The other lady has 6 more months.

We were talking about how we can't wait to have energy again. I had heard that as soon as two weeks after stopping the medicine, the energy levels return. The brain fog, too, is getting old. I search for words and sometimes lose train of thought. I feel really slow at times. It's been humbling, to say the least, to deal with an illness that affects one's physical and mental states.

I was sent this joke via email from a friend:

Two 90-year-old women, Rose and Barb, had been friends all of their lives.

When it was clear that Rose was dying, Barb visited her every day.
One day Barb said, 'Rose, we both loved playing women's softball all our lives, and we played all through high school.

Please do me one favor: when you get to Heaven, somehow you must let me know if there's women's softball there.'

Rose looked up at Barb from her death bed and said, 'Barb, you've been my best friend for many years. If it's at all possible, I'll do this favor for you..'

Shortly after that, Rose passed on.

At midnight the following Friday, Barb was awakened from a sound sleep by a blinding flash of white light and a voice calling out to her, 'Barb, Barb.'

'Who is it?' asked Barb, sitting up suddenly. 'Who is it?'

'Barb -- it's me, Rose..'

'You're not Rose. Rose just died.'
'I'm telling you, it's me, Rose,' insisted the voice.

'Rose! Where are you?'

'In Heaven,' replied Rose. 'I have some really good news and a little bad news.'

'Tell me the good news first,' said Barb.

The good news,' Rose said, 'is that there's Softball in Heaven!!

Better yet, all of our old buddies who died before us are here, too.

Better than that, we're all young again.

Better still, it's always springtime, and it never rains or snows. And best of all,

we can play softball all we want, and we never get tired.'

'That's fantastic,' said Barb. 'It's beyond my wildest dreams! So what's the bad news?'

'You're pitching Tuesday!!'

Life is short...
So, Remember to Live Well & Laugh Often!

BTW, I have a softball game tomorrow night. Yes, it's important to live life and make the most of it. You never know what lies around the corner.

I'm counting down. Yeehaw!

Well, I have one more shot to go. It will be this Friday and then a week of Ribavirin after that. I can't believe it's almost over. At least, I'm hoping this will be the only time I have to do this treatment.

I've learned a lot about myself through this. First, I've learned to slow down and listen to my body. I've also learned that I really needed some anti depressants before all of this. Yep, I am much more enjoyable to be around now than before treatment! And, I promise to not take this life for granted ever again. Life is precious and everyday matters. Good health is the most important thing and everyone should have the right to it. I don't know what I would have done if I was one of the many uninsured in this country. It's a shame that there are people without proper coverage here.

OK, I should listen to my body now and hit the hay. Oh, and I'm meeting my support group on Wednesday. It's been a while since all three of us have been together.

3 more shots....

I have three more shots of interferon left. Then after that, a week of ribavirin. This weekend was not bad. My husband woke up while I was sweating the night I got my shot. I usually sleep through the side effects but woke up when he did. I'm tired today and I think it's because I over did it this weekend.

We will be driving two days to Arkansas starting tomorrow. We'll stop halfway and stay the night somewhere. I haven't been home in a year. I know I'll be tired, but I'm looking forward to a visit with the family.

tired this morning

Whoa. I'm tired this morning. The shot went fine last night, but I feel like I've had about 20 benadryls. Dry, thirsty and sleepy. Oh well. I got to keep trudging on. 4 shots to go.

Giddy Friday

I get giddy on Fridays. Friday is the day I give my shot of Pegasys. This will be #20 tonight. Woo hoo. I don't like the way I feel the next few days. The extremely dry mouth gets old. Oh well. Not too much longer now. But, it's another peg down.

*added later
I want to add that I received my last box of pegasys and ribavirin today from Caremark Pharmacy. (well, that's if I achieve SVR and don't have to ever do this stuff again). Unbelievable. Only 4 more shots after tonight's.

Looking back

I changed my profile picture. It's me standing at the top of a tunnel that was dug out of some rock on the South Island of New Zealand. My husband took it from the bottom of the tunnel. I think the picture is a metaphor of what it's like when one is nearing the end of treatment:

I see light at the end of the tunnel with myself standing at the end. I'm looking back down the path I climbed from, reflecting on the hard times. I'm still standing.

Yes, there is light at the end of the tunnel. It's gone by faster than I would have expected. Like life, really.

I was talking with a friend the other day about getting the new puppy about the same time I was diagnosed with Hep C. It's strange, really, how all these stressful things have come about at the same time. But, the upside is that the puppy just turned one and is starting to calm down a bit, and the treatment is almost finished. I will have energy soon and a couple of months of summer to enjoy without taking pills and getting shots. I'm glad I'll be over this stuff soon. I'm determined to start running once I can without getting out of breath or having leg pain. I am going to take my life back and make the most of it. I have learned a huge lesson from going through this and I won't waste it.

Doctor's appointment and shot #19

I saw Dr. G yesterday. I have blood work in two weeks. All in all, I was doing OK. The rash is still there on my chest and legs. My scalp is still a little itchy. The mood is steady thanks to Paxil 20 mg. We mostly talked about my trip to New Zealand and he told me he was worried that the trip would be stressful. I assured him that, for me, travel is something I thrive on. He could see it. He and the nurse thought I looked so much better compared to the last doctor's visit. He was really worried about me.

My husband has been more understanding and patient since our trip. I told him about the appointment yesterday and I'm not sure he still gets it about how serious the depression was.

Tonight I will administer shot #19. Roll on July. I'll be done with you, Pegasys and Ribavirin.

a little tired, but feeling OK

I'm meeting with the support group tonight. There are three of us. We're trying to get this going but I guess there aren't a lot of people in this area interested. I'm not in an urban area so that might be part of it.

Molly Maid Service came on Monday. I am so glad I got them. I'm going to keep them through the summer while I continue treatment. I just can't do it all right now.

I worked Monday and then had a softball game that night. I totally overdid it. It's two days later and I'm still very tired. My legs felt like lead Monday night.

I have noticed that my side effects are getting better. My dry skin (rash, itching) is so much better! I can't wait to get back to "normal!"

I'm seeing the nurse practitioner today at the counseling place. I was so moody yesterday but I think it's due to the fatigue from working on Monday. (not to mention having to be at work by 6:45 am).

All in all, this week is looking up.

18th week on its way....

I took my 18th shot last night. I'm tired today but I did stay up later than usual last night. So, 6 more shots to go and then a week of pills after that. I see the doctor next week for a follow up. I'm feeling good just tired.

I do have a softball game on Monday night and I have to work Monday at the hospital. I'm worried I won't be able to run the bases since I get winded so easily. I don't want them to know about the Hepatitis C, but I don't want to miss softball, either. I'll just have to give it a shot and see if it is doable.

I worked this past Thursday and loved being at the hospital. When I work, I realize just how much I love it. Being a stay home mom is not for the faint of heart. I think I need the adult interaction!

Taste Buds coming back?

We had pizza last night. We buy the dough and toppings and make it on the grill. I was sampling some olives last night and there was an explosion of flavor. I think my taste buds are coming back. It will be so good when it's all back to normal. The food popped with flavor! Yay!

7 weeks to go...

I had my 17th shot last night. 17th! I look back, and can't believe how fast it's gone. I'll be honest, there were days when I thought I would never make it. And for me the depression is what makes it hard. But now that the anti depressants are at the right strength, I feel like I can handle the next few weeks.

My husband got back yesterday from New Zealand. He took the kids out this morning so I could have some time alone. It's been a while since I've been alone and I'm looking forward to it.

I did have a scare last night. I was out of medicine yesterday for my evening ribas and the interferon injection. The UPS guy showed up around 6:30 pm. Phew! That was a little close.

My husband returns from New Zealand tomorrow. The trip to NZ was good for me. I managed to get out of the blah and boring and pity party routine that I had succumbed to with this treatment. The 20 mg of Paxil kicked in, along with the trip and my psyche is feeling stable and happy. I hope I can maintain this with the man returning--he can be my worst critic.

This week as a single parent has flown by. My son turned 5 today and my daughter has been more helpful and pleasant. I actually feel like I've got some control over my life--even if it might be an illusion.

I met with my lady friends from the small group Bible study today. I love this group of women. There are a couple of women with grand kids and then myself with young ones. Then there are women with children in between old and new. I do get some energy from being around these like-minded women. It's great to study about God's love and remember that I'm special because of Him. When I need to feel secure and loved, I need to look to Him. It's too much of a burden on my husband and friends to be what I need. It's simply too much to ask of them. I need to lean on the one that will never let me down (thanks, Pat, for reminding me a few posts back).

My 17th shot will be tomorrow night but my Pegasys is not here yet! It seems the insurance company needed another authorization. Yep, I'm responding to the treatment and I have to be approved again. This does not make sense to me. My doctor's office came through for me and the stuff will be delivered tomorrow sometime. I guess the insurance company was hoping they wouldn't have to pay for any more drugs. I've got news for them.

So, that's it for now.

Had a good day...(it really can happen)

I'm not posting as much lately. I am still catching up with the mail, kids, laundry, etc. With that said, I loved New Zealand and if I had realized how wonderful it was, I would have moved there after my last marriage. It's so far away but everything is there so you don't need the rest of the world.

The Molly Maid service came today. I can't tell you how good it felt to be getting my house cleaned (and not by me). My daughter was home because she threw up in the night so I told her we had to stay out of their way. We ended up running errands and grocery shopping. The break from the routine has been good for my 6 year old daughter and me. I was so crabby before my trip and she was acting out. I think I've been ignoring her for the last 4 years ever since her brother was born. And then throw in the Hep C and she was feeling really left out. I've been showering her with hugs and praise lately and it's been great. More than anything, I want her to love me like I love my mom.

Speaking of my mom. ---I will try not to cry--she tidied the house before I got back from New Zealand. She talked to the kids about helping me out around the house. She explained to them that I was taking medicine that made me really tired and I need help with picking up toys. The kids have been great and I hope this honeymoon lasts for a while. She said she wished we lived closer so she could help me out more. Oh, do I ever wish that, too. Not so she can watch my kids all the time (no, really), but that I could do lunch with her and shop on a saturday afternoon like we used to do so many years ago.

She brought up some things that sort of weirded me out but I know she is getting older. Like, when she dies, she wants my daughter to get her diamond ear rings. And that my sister and I can split up her other jewelry. I mean, OMG, I know she won't be with me forever, but I'm just not ready to let her go. She is the best thing in my life next to my kids.

Tomorrow, I'm seeing a certified registered nurse practitioner (CRNP) in psychiatry. My GI doctor thinks I need to be evaluated for depression. I'm actually feeling back to normal. It's amazing what 20 mg of Paxil and a trip to New Zealand can do. I haven't imagined myself dying in over a month now. I think I'm going to be OK.

So, I'll go for now. I'm not tidying the house tonight. I'm going to go take my Paxil and drink about 3 more glasses of water.

I'm back

Rainbow over Doubtful Sound

I made it back from NZ. Had an awesome time and it helped me re-center. I'm on my 16th week and feeling OK. I think it helps that I still have wonderful memories of seeing dolphins on Doubtful Sound and staying with friends on the South Island. I hope this will carry me through for the next few weeks.

I am one who believes that with every dark cloud there is a silver lining (or in this case--a rainbow). I have to believe that things will get better.

14th shot

I got my 14th shot last night. I had a good sleep, too. The 20 mg of Paxil is kicking in and my mood is a lot better.

This weekend will be crazy as I get ready for my New Zealand trip. My mom flies in tonight and we will be busy tomorrow packing and grocery shopping. I'm excited about this trip and I'm so glad I decided to do it.

One of the women in my support group (there are 3 of us) found out she will get to continue treatment. She is genotype 1 and has had the virus for 30 years. She acquired it after a blood transfusion after an ectopic pregnancy years ago. Her second daughter got the virus from birth. I'm so happy for S! Her 12 week viral load was 52--2 away from being undetectable.

Johnny Nash-I Can See Clearly Now

Feeling better today...

Still here...

My weekend was OK. I did come down with a head ache this weekend and it took a couple of days to shake it. But, overall, feeling like there's hope.

The hubby is better, but still in denial. He still doesn't want to talk with the doctor. I'm being patient--I know there will be opportunity to discuss it again.

I should have napped today but caught up on some blogging on my other blog. I was blowing it off and it didn't like it.

So, that's it for now. The nice weather has lifted my mood. I'm counting down to my trip to New Zealand. I always like that part to a trip. :) We leave in a week!

12 Week doctor's visit

I had my 12 week check up yesterday. The doctor was starting another group of Hep C patients and 3 of us who have already started treatment were there to answer any questions, etc. After that meeting, we had our individual appointments.

Dr. G. came into the room and asked "How are you? You look tired." I replied, "I am." The dog had woke me up the night before, plus waking up to go to the bathroom and don't forget scratching my head in the middle of the night.

He was very excited to tell me that I am still undetectable. I was a rapid responder, so things are looking good for achieving SVR. He then started to ask me about symptoms. He knew I was depressed and asked directly if I was thinking of hurting myself. Hmmm. I couldn't say no. I said I wouldn't hurt myself because I have kids. I will be around for them. But, he wants to send me to a psychiatrist to figure out what anti depressant is best for me. I feel like such a failure. I asked Dr. G. if he would talk to the husband. For whatever reason, my husband doesn't think I'm depressed, but rather just using this as an excuse. Or maybe he thinks I'm depressed, but can help it.

I came home and had a talk with my husband. We agreed we take each other for granted and are going to try to be better. But, my husband doesn't want to talk with the doctor. This is frustrating for me.

I'm going to continue treatment. I would be so upset if the virus came back because I stopped early. I have to know I've done everything I can to beat this.

The emotional rollercoaster of Hep C treatment

She's up. She's down. She's up. She's down. She's up. She's down. She's.....

You get the picture.



The last couple of weeks have been rough. I upped the paxil because I could feel the depression getting worse. My husband was less than understanding (understatement of the year) and I have felt so overwhelmed. The house is messy and I feel so much guilt for not being the super mom/wife/friend that I should be. I'm so tired.

I see the doctor tomorrow, so I know that might be part of it. I seem to get anxious before the appointments which makes me a little more emotional. I hope I don't cry in front of him, but it's not looking good.

I just need some coddling and some kids gloves. All the time. I can't wait until the end of July when I will be done with all of this crap.

One day at a time...

I had my blood drawn today. It was for the 12 week viral load. I think this is a "biggie." I was undetectable at 4 weeks, but it can always rebound. I'm hoping I'm still undetectable. I might find out Friday. I have an appointment with the doctor and he is starting a second hep c group that day.

My mood is better today. Gosh, I can see how treatment is hard on a marriage. One feels hopeless and helpless because of the medicine and the other gets frustrated. And resentment can set in. Sometimes, I find myself thinking,"If we didn't have kids, I would be so outta here."

So, I have to hang on. I know that I will get through this and be stronger from it. I know that God loves me and He is my fortress and strength. It's at times like these that I call on some scripture to help me remember that I am not on my own.

Isaiah 40:31 (New International Version)

³¹ but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

a girl can dream...

I dream of a day when...

• I no longer have to remember to take my medicine
• I no longer feel nauseous in the middle of the night
  
• I no longer feel exhausted all the time
• I feel good
• I love life again
• I have hope everyday
• I can drink wine again
• I feel like I have control of my day
  

up to 20

I upped my Paxil dose to 20 mg per day. That is what most people start out at but at the beginning, I only needed 10 mg per day. But, the last few days, I could feel my mood going down. Coupled with no energy and not caring about life, I figured I needed a little help.

Another sided effect has reared its ugly head: nausea. I feel it in the middle of the night and then again in the morning when I get up. I don't like that feeling. I've noticed it before but it seems like it's more prevalent now.

I'm looking forward to the night when I don't have to get up and pee!

The last few days I've had headaches. The itching is still there, but it has lessened. But today, I am so down. I have no energy and I don't want to do anything. My son has soccer tonight and I don't have the desire to take him. Ugh. I think it's time to up the dose on the Paxil. I'm on a really low dose as it is, but I think the medicines are taking their toll on my serotonin levels.

I am almost halfway through the treatment. Friday will be my 12th shot and then the next week I'll have the very important 12 week viral load drawn. I know these next few days will drag on and on. Then, the clinic rescheduled my appointment so that I will be there when the second hepatitis c group starts their treatment.

That's it for today. I need to light a fire under my butt and tidy this house. Oh well.

11th shot and bye-bye gray hair.

My scalp was on fire. I was determined to cover the gray. Now I know why it says, "do not use if scalp is irritated." Yikes. I left the color on as long as I was allowed. And I did "wash that gray right outta my hair." I couldn't stand the texture and color of my hair any longer. I just hope it doesn't fall out over night. Especially, since tomorrow is Easter.

Last night was my 11th shot. I gave it on the right side of my waist. I'm afraid there's enough to squeeze still. I think I've been gaining weight. My sleep last night was about the same with me waking up every few hours. At one point, my husband told me to stop scratching my head. I wake myself up scratching my scalp. It's weird. This whole thing is weird. I can't wait to be done with all the pills, shots, etc.

The Nomads are meeting in London today. I wish I could have gone. There are two women from the states that are making the meeting. Lucky them. It's an on line forum for people with Hepatitis C. It's a great group with loads of support and tons of humor. I might get to meet some of them when I go to Paris in September. We'll see.

Happy Easter, everyone.

I seem to be having a stable week. I'm tired, like normal, but not feeling overwhelmed like last week. The roller coaster of emotions gets to me sometimes. But like a roller coaster, there are ups and downs. I just need to hang in there from day to day. It's been helping that I lie down for a bit everyday. Never underestimate a little rest.

My thumb is slowly healing. It is still tender and looks awful, but it doesn't need a band aid anymore. The right thumb is still cracked. For a while, I had a very difficult time buttoning the children's' clothes.

Better

I had a good weekend. My hubby and I have made up and no longer grumble when the other one enters the room. I took my daughter to a play on Saturday and we made it to church on Sunday! It felt good to go. The sun was shining today and it was warm--no doubt adding to my good mood. I took a nap this afternoon and I think that is the key to getting through all of this with the right perspective. So, I'm feeling better and wishing I could put this good feeling in my pocket for the next day I'm not feeling so great.

Overwhelmed

I think my husband sometimes forgets that I'm not up to par all the time. I look at the kitchen floor and know it needs to be mopped. I just don't have the drive/desire to do it. My computer area is a mess, and it really bothers him. I don't have the drive/desire to tidy it. He doesn't always say the nicest things to me. I know he feels frustrated. I have a hard time focusing a lot and I don't think he appreciates it. It takes all I got to get up and ready and pickup/drop off the kids, plan meals, grocery shop, clean (what little I do), etc. We are refinancing the house right now and all the paper work was more than I could handle. He was out of town this week, too and taking care of the pets and children is all that got done around here. I know it will get better someday--I just need to keep my eye on the prize.

sharp knives and low platelets don't mix

I was slicing some raw carrots last night and I sliced the end of my left thumb. It took me forever to stop bleeding. It looks really nasty now. I have low neutrophils, so that means I have to make sure it doesn't get infected, either. The joys of interferon and ribavirin.

9th shot

Took my 9th shot last night. I am over a third on my way to being finished. I can't believe how lucky I am compared to some that have to do this for 48 months or 72 months. I won the lottery when it comes to having Hepatitis C. (Just trying to see the silver lining in this cloud of life).

With the exception of my 4 year old waking me up a couple of times last night, I slept fairly well. And I wake up feeling the best I do all week. I don't understand it. I wonder if my body gets to rest in making interferon after the shot and that's why I feel good the next day? There has to be some literature on this phenomenon. I tend to feel bad on Sunday. We have a busy day tomorrow and I'm hoping that tomorrow is nothing like the last few Sundays. I really want to go to church tomorrow (of course, I might wake up and want to find a hole and climb in it) and then we are going to a neighbor's Eagle Scout ceremony. The 6 year old has a birthday party and our baby sitter will have to drop her off there. To top it off, the husband wants to have people over for dinner. I'm getting tired just thinking about tomorrow.

It seems like the itchy skin is getting better. My scalp isn't as dry, either. The metallic taste seems worse, however. I eat just so I don't taste the weird taste. No wonder, I'm not losing weight. It seems like a lot of people lose weight on this treatment. I'll have to slow down on stuffing my face when this is all through lest I become a beached whale.

That's it for now. Nothing exciting to report. And that my friends, is a good thing. :)

Feeling better today

I felt good today. And it seems like my skin hasn't been as itchy as lately. Hmmm. I'm hoping things are looking up. I did manage a little rest this afternoon. I find that makes a huge difference--even if I don't actually fall asleep.

Food still has lost its appeal. But, I eat. I think I like to eat too much to stop even if it doesn't taste good. I am still craving fruit that is sweet (i.e. apples, grapes). I'm not craving chocolate so much lately. Of course, that always changes depending on the time of the month! My coffee doesn't taste good to me. The other day I had a cappuccino at Starbuck's. It was so good. I can't do that everyday. I need my coffee or I am in a big fog.

My thumb is killing me. Well, not really but it does hurt. It split on the end the other day and is slow to heal. I'm putting antibiotic ointment now and hoping that does the trick.

Update on the support group: I think there are some more patients interested in meeting. The doctor's office called today to get some details. I've made a flier so I might just drop that by tomorrow.

Grapes, anyone?

Nothing new to report. I did take a two hour nap on Monday which helped me immensely. You know when you put your head down at 11:30 am and go to sleep immediately, it must be needed. The itching is still very annoying. Arghh. The insomnia is there, too. What else? Oh, my friend, Fatigue. Yes, she is still here but I'm hoping she leaves in a couple of weeks. I think the one side effect that I read about and totally poo-pooed is the metallic taste in my mouth. Most foods taste weird. I still drink coffee, but it has a strange taste. I think I ate my weight in grapes yesterday. Yep, if something tastes yummy, I eat it until I can't eat it anymore. I bought more grapes today!

My 4 year old is having a friend over today after preschool. It's a standing playdate where the mommy doesn't come. That's fine. It's easier to let the boys play and not have to chat with a mom. I would prefer not to have the boy over, but my little guy is so bored after preschool. The mom doesn't know about the Hep C (I'm not close to her at all). I might have to cancel next week so I can have an afternoon of nothing. Speaking of the two, I need to go pick them up. Sigh. Is it summer yet? I beleive the end of July is the month that all this crap will be over.

Sunday--ho hum.

I was blah today. I think I'm noticing a pattern. It seems like two days after my shot (shot on Friday, then Sunday), I feel down. I just want to hibernate and not deal with anybody. Then by Sunday evening, I am so stir crazy. By that point, I figure why put make up on just so I can go to the grocery store? (Sorry, no matter how bad I feel, I almost always put make up on). Thank Goodness Pete is so great with all of this. He takes the kids out and lets me just relax. I am feeling a little more rested by the end of Sunday, too. I wonder if I should bump my Paxil dose up to 20 mg? The doctor said the higher the dose, the longer it takes to wean off of it at the end. I think I'll wait and see how this week goes. It could be that if I can get through the next couple weeks, I will be OK. I will find out the results of my thyroid blood test tomorrow. That could explain a lot. I hope it's OK!!!

Well, I know one thing--I should be in bed and not blogging right now! :)

Two months down.

Just gave myself the 8th shot! Two months down and 4 to go. Woo hoo! I have had a very tiresome week. I don't know if that trip to NYC is what took it out of me or not. I'm hoping I have a good night's sleep tonight. I usually do after my shot. Does anyone else have this same phenomenon happen? I sleep well and wake up rested. It's the only day of the week I feel rested.

My WBCs are a little low. The doctor said he will draw them monthly now. I think the interferon is causing this. I'm slightly anemic, too. Yawn. I know I'm like a broken record at this point.

I found out from one of my partners in crime (another patient) that there is another newbie group starting up April 24. The doctor asked him to come. I want to be asked! I realize I'm a loose cannon sometimes and the doctor is probably worried I will say something stupid. I hope they mention the support group we started. Our next meeting will be April 1st. The irony is not lost on me. :)

Behind the 8 ball...

The fatigue has been really bad the last few days. I wake up after a fitful night of sleep (if you can call it sleep) and after an hour, I want to go back to bed. I actually took a nap this past Monday around 11 am. It felt so good. I think I need to nap everyday around that time. (In a perfect world, this would be the case).

This morning I felt like I was "behind the 8 ball" as soon as I got up. I just had no energy but life continued. Get kids up. Make lunch for Kendall. Make breakfast for kids. Eat cereal so I can take ribavirin. Quickly make coffee. Drink coffee. Put makeup on. Tell kids to eat, then brush teeth. And then we were rushing out the door. I shouldn't be tired from that, but I was. :(

I was late to the bible study but didn't care. Afterward, I met my friend and her son for lunch. She could tell I was tired and offered to watch Clayton so I could rest. I took her up on it. I managed a little nap and I locked in on a new interest rate to refinance! I should have napped a lot longer....

I wasn't feeling great after dinner and decided to skip girls night out. You know you're tired when you skip girls night out.

Life does go on...

Sunny Day (or how to lift one's spirits)

The weather has been spectacular today. It really helps with me mood and energy. However, I have been really tired lately. I drove to New York City with the kids and walking around the city wore me out. I'm sure there's no way of knowing, but I wish I knew if this is as tired as I will get. Also, is my energy going to come back before treatment is finished or does it come back only after treatment is completed?

The fatigue is probably the most annoying part of this. Oh, and the itching. Arghh! I do wish food tasted normal. I have a metallic taste in my mouth most of the time. Anyway, I might go to New Zealand in May, and if I could know for sure that I won't be more tired than this right now, I would go for sure. I am almost for sure about it anyway. I've always wanted to go and with my husband's way being paid for, it's almost too good to pass up. Plus, we have friends there and we would stay with them.

I guess that's it for now. I'm still hanging in there. This Friday will be my 8th shot! Only 16 to go after that. Time flies when you're having.....fun. Yeah, right.

(B)itchy

I am so itchy! I can't stand it. And today I have been so tired. I don't know if it's due to the rainy weather or the shot of interferon I had two days ago. And I'm easily annoyed today. Arghhh!

Nothing else to report. Now, I must go and scratch!!!

Fatigue

I've been tired the last couple days. My hemoglobin is a little low and I think that's why I'm feeling it. I have to work today so I know it will be an early night for me...right after the shot. I think it will be shot #6! I really should keep up so I can count down. :)

When I say "I am a Christian"

by Carol Wimmer

When I say..."I am a Christian"
I'm not shouting "I am saved"
I'm whispering "I get lost!"
"That is why I chose this way."

When I say..."I am a Christian"
don't speak of this with pride.
I'm confessing that I stumble
and need someone to be my guide.

When I say..."I am a Christian"
I'm not trying to be strong.
I'm professing that I'm weak
and pray for strength to carry on.

When I say..."I am a Christian"
I'm not bragging of success.
I'm admitting I have failed
and cannot ever pay the debt.

When I say..."I am a Christian"
I'm not claiming to be perfect,
my flaws are too visible
but God believes I'm worth it.

When I say..."I am a Christian"
I still feel the sting of pain
I have my share of heartaches
which is why I seek His name.

When I say..."I am a Christian"
I do not wish to judge.
I have no authority.
I only know I'm loved.

Why Me?

When I was first diagnosed, I'm sure the phrase "why me?" crossed my mind. After all, this was going to be my year. But, then I remembered that we all have something we have to deal with so one could ask "why not me?" After accepting it and deciding on a plan, I began the waiting game. I felt alone even though I had told friends and family. I still didn't know anyone personally, who was dealing with this.

Right now, I'm in a womens bible study and we are studying the Old Testament book, Esther. She was a Jewish orphan, raised by her cousin in Persia. She had blended in with the other people of the land. Long story short, she becomes Queen of Persia--a Jew! But, it turns out there was a decree sent out to kill all the Jews. And here was Esther, in the right place and the right time. Her cousin tell her she must tell the king about this plan to destroy the Jews. Esther 4:14 says

"For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father's family will perish. And who knows but that you have come to royal position for such a time as this?"

This passage speaks to me. I feel like I've come to a place in my life where I can decide to be silent or I can be proactive. I'm not royalty and I'm not talking about the Jews being destroyed, but rather, it's about setting up the support group for Hepatitis C in my town. I can't sit quietly while others are out there with no place to go, no one to talk to. I feel I need to use my bold personality to get something going, to help others. I'm no wall flower and I'm not taking this lying down.

I met with Ron and Sandy last night for our first support group meeting. Ron brought his wife. We had an awesome meeting! I could tell we all came away feeling like it's going to be OK. I ran into another patient today while walking down town. We stopped and chatted a bit. I told him about our meeting and he sounded interested.

I can answer that question now (you remember the "why me?"). I know why this happened to me. I'm meant to make a difference and help others dealing with this diagnosis, if only in giving support.

Viral Load Results...

At 4 weeks..............UNDETECTABLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WBC	2.80	4.00-10.80 K/uL	L
RBC	3.78	3.85-5.15 M/uL	L
HGB	11.2	12.0-14.5 g/dL	L
HCT	31.4	36.0-44.5 %	L

These other things are being watched closely, but I'm very happy about the viral load! The doctor was so thrilled to tell me.

Local support group?

I've been pestering the doctor about a support group. He called the other patients and two of them gave him permission to give me their phone numbers. I called them on Saturday and we are going to meet next week and talk. I'm hoping this will be a start to a local support group for people with Hepatitis C. The numbers are only going to increase as my generation and the one just ahead of me gets older. More people have Hep C than HIV in the United States, but yet there is hardly any attention given to this blood-borne disease.

I think one of the hardest things with all of this is that there is no one to talk to. My husband has been understanding, but it will be invaluable to talk with someone who is going through the same thing--someone who has dealt with the same fears.

I see the doctor tomorrow and I hope to find out the 4 week viral load. To quote the doctor, "This is a big one for us."

I had my blood drawn yesterday. My liver enzymes are looking better. Last night my husband helped me with the shot. I had him pinch the back up my upper arm and I gave myself the shot there. It didn't hurt and I like that spot for the shot. I see the doc on Monday and will find out my 4 week viral load. This is a big one. Fingers crossed!

I still feel great. No major side effects. My skin is dry and so is my scalp. My mood is stable thanks to Paxil.

Blood drawn tomorrow.

I'm getting my viral load checked tomorrow. I think the doc will check for some other levels, too. I hope the virus is responding to the interferon and anti-viral meds. Fingers crossed.

My scalp and skin is starting to get dry and itchy. I've had this before--about 4 years ago. My right side has been hurting a little. Not really hurting, but a strange feeling. My next appointment with the gastro doctor is March 2. Just 5 more months to go of treatment!

4th shot!

Last night, I gave myself the 4th shot of Pegasys. Only 20 to go. I feel fine this morning--a little tired. I'm still dealing with the sinus infection that really knocked me out this week. I think if I didn't have that, I would feel really great this morning.

Next Friday is my birthday. I'll be 41. I think I get my blood drawn that day to check the viral load. I'm wishing for an undetectable birthday gift....

Grumpy

Today I was so grumpy. I am still fighting this cold and wouldn't you know it, I have lost my voice. It is so frustrating. Colds are bad enough when that's all you're fighting, but to have it on top of the interferon, just plain sucks. At one point today I was thinking "I am sick and tired of having a 4 year old boss me around and too sick and tired to do anything about it."

I emailed my doctor regarding setting up a support group for the patients who are going through this. He hasn't gotten back to me and it's bugging me. That was one of the reasons that we started together so that the patients wouldn't be doing this all alone. We'll see.

I am tired of feeling like crap.

Blood test result from Friday.

I had my blood drawn on Friday. My WBCs and platelets are low. I think this is from the interferon. And I've come down with a cold, so it's not good that my white blood cells are low! I need them to be fighting off this cold. My liver function tests are stable right now--still elevated, but not going higher.

How to give yourself a shot of Pegasys

Tonight, I thought I would show you how to give yourself a shot. It's really easy and something anyone can do. Always wash your hands first.

Pictured here are the syringe, the needle, and alcohol pad.











I am holding the needle in my left and the syringe in my right.












I am putting the needle onto the syringe. Just give it a twist and push down a bit.













Next, open the alcohol pad and wipe a little area on your skin. The best places are the "love handles" around your waist, the thighs, and the back of the arms in the triceps area (this location requires a second person).





Then, you need to pinch some skin together (Pinch an inch) and just put the needle in deliberately. Almost give it a stab, if you will.



Then slowly, but steadily, push the dose in. Don't bolus it, but don't linger either. Make sure you continue to pinch your skin together. Then pull the syringe straight out.











This is a safety syringe so you don't need to recap. Just put the syringe down and the cap pops over the needle.











Dispose of the syringe and needle into the sharps container. You're done.

3rd shot coming up today...

Well, here we are again back to the day for the shot. I had a good week-all in all. I have been a little more tired than usual. I'm not sure why. I think the meds can cause anemia. The doctor's office called yesterday and I had to go in today for blood work. They were checking my CBC and Liver enzymes. I will get the results on Monday. I will post later on how to give a shot (If I remember!).

Sunday

Today, I slept in a bit and we skipped church. I had friends over last night for dinner and was tired this morning. I've noticed that if I over do it on one day, I'm really tired the next morning. I think that's the worst part with the fatigue. I just can't get out of bed when I need to. I stay an extra hour sometimes! I just can't make myself go to bed at 9 pm!

I've noticed I have a lot of energy on Saturday after my shot on Friday night. Is that normal? I'm one of the lucky ones and I'm not sick at all! It is so great. I've had so much anxiety about all of this. For a while, it was almost paralyzing. I couldn't focus on anything else. I thought I was going to be puking and in the bathroom all the time. And I really worried about my husband and if he was going to be able to handle taking care of me and the kids. Anxiety is an awful feeling. I've never felt it until all this hepatitis c stuff came up. Oh sure, I was uptight, but not anxious. I wonder if I'll stay on the Paxil after I'm off the interferon. It wouldn't bother me to stay on it because, frankly, I haven't felt this good in a long time.

I do have some good news. I'm going to Paris in September. My sister and her husband are going for 10 days and I get to go for about 5 to 6 days of it. They rented an apartment near Notre Dame that has 1 bedroom and a sleeper sofa. I get to go without kids and husband! Pete's family have been to Paris so many times that they're not like regular tourists. I'm looking forward to being a tourist. Look out Champs-Elysees, Eiffel Tower, and all the wonderful museums! Gosh, I may just have to wear my white tennis shoes to celebrate! Ha ha. My sister will be the loud talker! Which brings me to a time when I visited her when she was living in Northern Italy. I rode a passenger train to Venice with her. It was my first time on a train. Anyway, all the Italians were dressed so beautifully (men and women alike), and my sister and I had on our identical bright red Woolrich coats that our mom had bought for us at Sam's. Yeah, we stuck out like sore thumbs (or Americans).

I'm so blessed to have a sister like her.

2nd Shot

Last night, we went out to dinner. I had to drive the baby sitter home so just before I took her home, I gave myself the 2nd shot. I did a better job this time than last week. It didn't hurt! It was around 9 pm. After I got back, I took two Tylenol and went to bed around 11pm. I slept through the night! If I got the chills like last week, I slept right through them!!! Yay!

About the shot last week. I had lost my touch on giving shots! I had to take insulin with my 2nd pregnancy and they didn't hurt. I also had to take heparin shots post partum with both pregnancies. But, last week I stuck that needle into my spare tire around my waist (arrgggh) and "Ouch!" I remember thinking "Dang, that hurt!" So last night I was quicker on the entry and had a steady hand while pushing in the dose. Much better.

So, that's the update. I was looking forward to the shot to see what it would do. It was uneventful.

Looking forward to this Friday!

It's Friday and that means I get a shot today. Actually, I'm going to do the shot tonight before bed so if there are side effects, I hopefully will sleep through them. I've been looking forward to this day. I want to see if I will be as "lucky" this week as last week. I can't believe how good my body feels. I am tired, but it's not holding me back much. I definitely can't stay up past 10 pm! Ha!

So, bring it on Interferon! I'm ready and waiting!!!

Feeling lucky

OK. I'm knocking on wood right now. Or waiting for the other shoe to drop. Or...think of a saying that describes someone holding their breath because they feel good and think "Oh no this is too good to be true." I thought I was going to be puking and really sick at this point. So far, just the chills 6 hrs to the minute after the shot. I don't know what to think except all those prayers are working. I probably have at least 50 people praying for me and, by golly, I think it's working.

Oh sure, I'm otherwise healthy and that probably does have something to do with it, but I'm not sure. And I'm just taking one day at a time and thanking God everyday I wake up and feel fine. Woo hoo! Hallelujah! Yippy!

Started Treatment

Yesterday, I had an appointment with my doctor. There were five of us. One guy is into his 28th week and the rest of us were just starting. We saw a presentation and then went to private exam rooms to meet with a nurse to get our shot. Then we visited with the doctor privately. I think it is a good idea because there might be a chance to have a support group out of it. I'm such an extrovert and to be able to talk about stuff in person with people going through the same thing seems like it would work for me.

I did have a side effect last night. I got the shot around 3:30 pm and by 9:30 pm I broke out into the chills. It was like I couldn't move because I got so cold. I was shaking and didn't want to move! I was able to sleep and next week, I think I'll give the shot around 8 pm.

Fingers crossed that the next few days will be OK.

Leap of Faith

I feel like starting this treatment is a leap of faith. If you were to take an airplane and you had an 80% chance of getting to where you want to go, would you do it? Would you embark on the plane if you knew it was going to be a bumpy ride some of the time, sometimes unbearable. Anyway, that is how I view this.

It's real

The meds arrived today via UPS. I start in two weeks and I'm getting a little nervous. I'll try not to think about it for a while until I have to.

I've had weird pains in my right side for the last two weeks. I guess this will come and go.