Headed to Chicago!!

I am so excited about going to Chicago today that sleep was sparse last night - up & down!! Just like my white blood count! Doc tells me yesterday that my white count fell down this time below 2. So we watch and wait.......I should find out more about it on Monday when we test again.

I woke up the other day with my mouth on fire....one of the side effects of the interferon is sores & sensitivity in your mouth and throat. It feels so weird to walk around feeling like you just took a big swig of Tabasco Sauce! I don't have much for taste buds at the moment either. I have burning from my lips all the way down to the bottom of my throat even when swallowing water.....the only thing that makes it feel better is ice-cream :) I know - what an excuse huh? My doctor had me go to the pharmacy yesterday to pick up this concoction of medications that numb the mouth and throat as well as help them heal, I swish and swallow three times a day - the only problem with it is it only numbs for about 30 minutes. But boy do I love those 30 minutes :).

I head out to Chicago today to go to my companies convention! I am so excited to see everyone again!

Day 25

Church was good today and Jaxon is getting better at playing with the kids without me :) He is such a funny boy.......He walks up to everyone and waves his little hand and say "hiiiiiii" "how ya doin?" so dang cute!! He is constantly putting a smile on my face :)
The sermon today was about identity theft.....How "life" steals your true identity from you.....the identity GOD gives you before birth - I could so relate!! It was also about how to get your identity back - we have such a forgiving GOD! GOD is good all the time!

Who Moved My Cheese?

This book, by Spencer Johnson, MD. was recommended to me a couple years ago by my Sister- In- Law and I have finally picked it up! I am excited to start the reading today! The book is about change and ways to become successful with it. Starting this treatment has created quite the change in my life and in the lives of those around me. I am hoping this book will shed some light on "Who Moved My Cheese" and why!

Cure day!

WOW!! Today sure got here fast!
It has been a really hard week! Migraines, Emergency Room, Nausea, Body aches....you name it!
Everyday this past week consisted of one thing or another or all of the above!! Sometimes it seems as if just when I start to feel good.....it's time for another shot. I hope my body starts to get used to this soon! Anyway..... There is some good news :) My white blood count is starting to rise again! YEAH! AND..... my doctor asked me to come in today and he gave me the needles for the two shots I had left & gave me more Pegasys! This is really good news because we still haven't figured out how we are going to pay the co-payment, so we have bought a little more time - Thanks Doctor Eric! Yes, my doctor and my husband have the same name :) (which to me is a really good sign!)

While I was sick this week, some people really stepped up and helped me out.....Lorie Nijjar jumped right in and trained on my conference call - Thank you Lorie! She also grouped together with some amazing prayer warriors for me :) I got emails and phone calls, voice & text messages from so many of my "For Every Home" friends & family - you know who you are:) ......Thank you all for thinking of me! And then there was my sister (my rock!).....who let me cry on her shoulder, and re-assured me that everything was going to be ok....I love you Susa!!

This treatment, in some ways, is not near as easy as I thought it would be - but then in other ways, it is simpler that I thought. It is HARD dealing with the side effects - but one look at my grandbaby (my gift from GOD) and it is so EASY to do my next treatment.

Been a few days

Oh my stars!! So much has happened in the past few days.....not sure where to begin.....
Let's start with PANIC TIME!!
Wednesday....Every Wednesday I go have blood work done to see how my red cells, white cells, ect....are doing and as I am getting ready for this, I call the pharmacy to see if they had heard yet from the Prescription assistance program in regards to my almost $800 per month co-pay. They have not yet approved it....OK it's Wednesday.....I do my treatments on Thursday.....I have no more Pegasys.....I DON'T have $800 to pay for the shots! I called my doctor and he didn't have any extra samples - I was just kicking myself for day1....remember, the wasted shot? I was so upset, my mom told me to go get a massage (my son had given me some free massages to use during treatment) so I make the appointment do attempt to de-stress....the therapist was great!
I felt so much better afterward. I got out to my car and noticed that I had missed a call from the doc's office......they found some samples for me! I was so excited! I had to drive about 30 miles to go get them but that was ok!! I went in and received the box of shots from the nurse and was so far on cloud nine that I didn't even look in the box!

On Thursday afternoon I received a call from the Doctor.....White count is falling already. So we are going to continue treatment and monitor more closely. The good thing is that now they have an additional treatment they can put you on to assist in raising white blood cells. They didn't have that 10 years ago for Hep C patients. We just have to get pre-approval from my insurance. So Thursday evening I am getting ready to take the treatment, I opened the box and noticed there were 3 weeks worth of pre-loaded pegasys shots! WITH NO NEEDLES! Panic again!!!! Dr office closed!! What am I going to do? Then I remembered the day 1 shot that never got used.....Luckily I still had the needle from that shot! WHEW!!! I tell ya.....my emotions at this point are on a roller-coaster ride!

Still not sleeping well at this point - a few hours a night. I am totally exhausted. I had a very busy weekend as well - two vendor shows! Thank GOD Wendy, Randi and Stacie were there to take up my slack on the longest one (Draper Days - a two day show)....I am so grateful for each of them :) And my Baby Girl went with me to the other......and she made a sale!!!

Here it is Sunday night and I was able to get quite a bit of rest today! After church Jaxon & I took a nap and then I took another short nap and off to the massage therapist. My son was a member of a local Massage Envy and he had 13 prepaid massages that he gifted to me to help releive the stress of the side effects. Thank you Joey! I am going to head off to try and catch up on even more sleep for another very busy week in my business coming up.

Update

Good morning....Last few nights were awful for sleep! Gotta get back on my routine - SOON!!
Other than sleep deprivation :) I am doing well! I know I have lots of prayers going on out there! Thank you for that! Still no word on prescription assistance, hopefully I will hear back from them today! Next shot is in two days!

Worship

Church was awesome today!! Jaxon went to his new 2yr old class :) He had such a wonderful time! Sermon was excellent! The music just filled the room with his presence! GREAT DAY!

The Lake House

Yesterday was wonderful - after a relaxing venture out with my mom for a few hours in the morning, I laid down for a nap and my daughter woke me up with homemade brownies - nice surprise :) She came over to watch 'The Lake House" with me.....she put on the DVD and climbed in bed with me and we laughed, cried and ate brownies together as we watched the movie....It was nice to spend some time with her......she only lives about a mile away from us but sometimes it seems like she lives on the other side of the US. lol I love my baby girl!!

Mornings

Mornings sure seem to be the best for me.....from about 5 till around 10. I feel really good during those times but once 10 hits whew....I am wiped! My sleep pattern is a little crazy right now but hopefully it will level out and I can sleep through the night again :) Looking forward to worship tomorrow!!!

Last Night

Last night was a little tough.....I bet I woke up 12 times!! Not really sure why. Today I feel good so far, really wasn't expecting to....but so grateful that I am :) The injection sites itch like crazy and my first injection (July1) site is still red. Looks funny but as long as I keep my tummy covered no-one can see:) I dedicate a small amount of time each day to learn more about this disease and the treatments, and it so amazes me how many people in this world suffer from liver disease - 5.3 MILLION people about 2% of the US population! Hmmmm wonder what it is about me and 2%? I was in the top 2% in my previous Direct selling company and am probably within the top 2% of my current Direct Selling company and now I find I am in the 2% of the US population who has liver disease. Next I MUST put myself in the top 2% of CURED people :) Now that's a good goal!!!

The Cure Day!

Today is Thursday.....for the next 47 weeks "Thursday" will be known as "the cure day" :)
I take my shot of "cure" every Thursday - so I figure I will rename it to something that will make it more positive!
I want to thank those who are leaving me comments and supporting me in so many different ways....I love you all!
Today I found out my cousin went through the treatment too and he is another success story! God is so good.....all the time! We talked for quite a while about the side effects and stages of his treatment. He gave me some great advise and it's great to know there is someone I can call if I need to talk. That's about all I have for today, going to go get a good nights sleep and see what tomorrow has in store for me :)

Great things today in spite!

Had somewhat of a setback today......found out that my insurance is going to pay for 65% of my treatment leaving me with only 35% to pay......$779.00 per month!!!!! for almost 11 months!!!
The pharmacy I am going through is trying to get a grant from the manufacturer so I am keeping that in my prayers :)
Speaking of prayers....and thoughts....I went to get my blood-work done today (it will be a weekly visit to the lab) and when I got home one of my dear friends had brought over cupcakes with a note letting me know she was thinking of me :) Thank you Stacie!

Now this is support!!!

One of the side effects of my treatment is the loss of your hair.....so when I told my sister, who ironically is a hair dresser, about me starting treatment and the side effects - she told me that she would go through it with me.....even over 2000 miles away from me.....she would go through it with me! We have talked almost every single day! The best and most touching part of this story is that she has cut her hair to the same length as mine and together we will maintain the "same hair style" through out the entire 48 weeks even if it means having none! You see there is a little story behind this gracious and selfless support that my sister gives....about 16 yrs ago, she was diagnosed with cancer - my mother told her "Don't you worry Wendy.....if you loose your hair I will shave my head!" With God's grace, my sister escaped chemo & radiation. She was able to keep all her hair but she never let go of how our momma made her feel simply by offering to sacrifice with her. Thank you "Susa" for your sacrifice and your support....I love you!

Another good day

Today was another good day! I got up early (ok, that wasn't so good) and got some work done and headed down to the corp office......it was good to see everyone :) I also got to sit down with someone who has successfully completed treatment and listen to their experience and get tips on how to cope with the side effects. Their support and encouragement is exactly what I needed! Can't ever get enough of that!!

Independence Day

Wow this day sure takes on new meaning for me :)
I am so grateful for the opportunity to fight for my freedom.....freedom from this disease! One thing going on treatment has done for me is it has made me feel in control finally.....I have lived 45 years with this disease and it has controlled me up until now. So many years of being sick and not ever knowing why....being diagnosed with a disease that had no name....not knowing where it came from....finding out that there is no known cure....knowing I had no choice but to live with this disease for the rest of my life....until now! Now we have a name....we know where it came from....there really is a cure....and I have a choice! That to me is freedom. Thank you lord for giving me a good day, a day to rejoice and be grateful. A chance to fight and be free!

Day 2

Pretty uneventful day......The Ribovirin gives me headaches, so Tylenol has become my best friend! I think I took 3 naps!! Definitely all rested up for day 3 - I know the days will get better as my body gets over the initial shock - looking forward to it!

Day 1 of treatment July 1st 2010

This morning I went to my see my doc, Eric, he made me feel so important.....we spent almost 2 hours talking about my disease and answering all my questions about treatment. I know this time will be a great success! His whole team is so supportive and really easy to talk to.....I feel very blessed to have found them.

He walked in with this "starter kit" of information, first aid kit, ice pack, more information, contact numbers (including his personal cell phone) and went through every item and explained it all to me. Then he came in with the medication and we went over all the instructions and got the first injection all ready for me to self administer at the comfort and privacy of my home. A million emotions started flooding my head and body.....this is it....this is really about to happen. I have failed treatment twice before, but this time - I have faith - It will work!

I drove straight home and started going over all the material again because - through all the emotion - I had forgotten everything he said :) I waited for my husband to come home to start with my first injection. We sat on the bed and, I showed him everything and I mean everything - read through all the materials, got my first dose out and psyched myself up for the first injection. Again, I forgot everything......I had to look through the step by step instructions again.....I had also forgotten that the doctor had already prepared that first injection for me....so I immediately pushed the syringe up to release any air bubbles, like I knew what I was doing, and shot the whole dose out onto the bed! I wanted to just start crying but instead my husband I started to laugh!!! About $750.00 worth of Pegasys Interferon wasted!! He went over to the fridge like it was no big deal and got another dose out for me and we read AGAIN through the instructions together...this time we had we had the prep right!
He had already arranged for everything and everyone outside of our bedroom to be taken care of so all I had to do was rest. It probably took me about 3 minutes to inject myself but it seemed like I was sitting there for 30 minutes with the needle an inch away from my skin. Again psyching myself up for this 48 week long journey. And then I just took a deep breath and...did it!