Wednesday, July 30, 2008
Day 169
This roller coaster is bringing me back to insomnia. I try to go to bed early and I just can't get comfortable. I fall to sleep only to wake up a little while later with my achy body yelling at me to roll over and find a new position. It's a vicious circle that goes on all night long and winds up giving me a headache at around 4 am.
I know I need the sleep to manage the fatigue, but I can't seem to get it.
I thought about turning my mattress but my poor Jimmy has thrown his back out while remodeling the bars bathroom downstairs. It looks so painful....he's a trouper with it though. He went to the Chiropractor and got some relief, but he's sore as hell.
I'll make the kids help me turn it this weekend.
Tomorrow when I go to Hershey I'll ask for something to help me.
While waking up this morning is slow, I hope that the day goes better......
Lisa.....read my comment to you on day 168. I Hope it helps!
Tuesday, July 29, 2008
Day 168
Woke up this morning feeling pretty good even though I was up and down a bit last night. Of course the security alarm beep beepin' at 4 and 5 am didn't help anything.
I worked on more of the plotting for the building front this morning and off to work I go.
Hope the day stays nice to me!
Have a Happy Tuesday!!
Monday, July 28, 2008
day 167
Saturday, July 26, 2008
Day 165
Friday, July 25, 2008
Day 164
So I hope today gets better.
I had to purchase the Dreamweaver software yesterday to replace the garbage that I bought from Microsoft a year ago to build our website. FrontPage is now in the garbage! Microsoft should be ashamed of themselves for ripping us off so freakin' often. If I had half a brain I'd join the hackers who attack Microsoft. I completely understand why it's happening. This is the 4th Microsoft product that I've gotten screwed over on and I can't count the hundreds of hours and dollars that it's cost me personally and my company at work. What's more frustrating is that Microsoft really just does not care!
In the future I would even consider buying a Mac!
The new software should be here next week and it'll take me a few days to figure it out. It might be a nice distraction from tx. Hopefully working with it will help to make the time go by faster. Hopefully the brain fog doesn't make learning it take longer. We'll see if my brain can handle it!
Have a Good Day everyone!
Thursday, July 24, 2008
Day 163
That's what yesterday was and today isn't starting out much better.
I took an Ambien last night in hopes that I would sleep better. I think I did. I didn't do the "It has to be later than that!" dance all night long looking at the clock.
But this morning the fatigue is still right there telling me to go even slower than I have been.
Sitting down I feel not too bad. The wave of fatigue really only hit while I'm moving about. Sitting down I just feel alittle drained.
Maybe I'll snap out of this set back sometime today.....if not, maybe tomorrow. I'll go to bed early again tonight and maybe that'll help.
It's funny how you scramble to come up with ways to feel better while on tx. While you feel good you enjoy .....but when you fall back down and you start feeling like shit, you'd do or take just about anything just to have the feeling good back again.
For now all I can think of is getting more sleep.
I have the feeling that the next 6 months is going to be about work and sleep.....
I looking for Ducky....I know he didn't go far.
Wednesday, July 23, 2008
Day 162
After dragging through work I stopped at Burger King for supper and found out that I still get "Riba rage". Took 15 minutes in the drive thru because their coke machine was screwed up and they refused to just give me the money back for a large coke and let me be on my way. Oh no! they had to make me sit and wait while they fixed the damned machine! Bad choice for them because what they found when they finally brought me my food was a total bitch.
Then when I got home the food was cold because I think they just left my food in the bag while they toyed around with the coke. Pissed me off all over again! lol....I won't be going back to Burger King!
I ate my cold dinner only because I had to take the Ribavirin and then I crashed on the couch.
The night to come was filled with insomnia up and down all night.
I took my late Nuepogen shot and at 9pm I got up to get ready for bed and while doing so I found that I now have bald spots popping up on my head. The one is a little bigger than the size of a quarter right in the middle of the back of my head!
I know I've lost at least half of my hair......but now bald spots!!! S.O.B.!!! I was hoping that my hair was just thinning out.....but no....I freakin' really going bald!
That's just not funny!
It's things like these that make you loose sight of why we're taking these drugs.
It's just such a long treatment that it's hard to keep it in perspective.
Through the itching, fatigue, "riba rage", lost weekends being sick on the couch, rashes, mouth sores, 4 injections a week, bone pain, joint aches, Brain fog, the "what the hell is that" eye problems and now going bald.....through all of this stuff it's hard to remember I'm at war with a dragon called Hep C and I'm winning. It's hard to stay focused. It's just hard.
People say to me "Oh but you look so good". Really? What else are they supposed to say? Wow you've lost 20 pounds and you look like an Ethiopian?
Now I'll start looking like a bald Ethiopian. But they'll still say I look good and I'll still say thank you. They'll still ask how I'm feeling and I'll still say I'm hanging in there. I mean really....what the hell is anyone supposed to say?
Yep....this morning is a head trip. The Ribavirin and bald spots have messed up my head...
It's time to go get ready for work and then take more of them...yeahaw.
I guess I shouldn't have gone back off the Zoloft huh?
And the day goes on.......
Tuesday, July 22, 2008
Day 161
Ta-ta-ta-dum......He's Undetectable!!!!!!!!
Congratulations Terry the Dragon Slayer!!!!!
You're finally done!!!!
My Hero!
Yesterday at work wasn't as crazy as it has been. Susan's back from vacation so the work load has lessened. Of course that means that the day is longer and for a Monday that's never a good thing.
I woke up this morning and realized that I forgot to take the Nuepogen last night! Brain fog is pretty thick the last few days.
I'll have to take it tonight.
I guess part of why I missed the shot was because I spent the evening fighting with FrontPage trying to get the good for nothing program to publish an update on the Roads End website.
Did I mention that Microsoft Corp. Sucks!!! FrontPage is completely worthless. Out of the blue it won't work with our site anymore and Microsoft decided not to offer tech support for it now. So it's become worthless to me and a waist of time as I will now have to look into buy a new program and redesign our website. UMPH! No wonder why the hackers attack Microsoft so much!
So that will be what I'll be doing for the next few weeks. Looking into programs like Dreamweaver and Hot Dog trying to figure out which one I'll learn faster in order to get the site up and current again.
This morning isn't too bad. Waking up is it's usual slow process. I took something to make me sleep last night and tried to go to bed early. I think I fell to sleep at around 9:30 so that wasn't too bad. I didn't start waking up until around 4am. Then off and on until the alarm went off at 6:30am. By that time I was sleeping so good that I must have hit the snooze instead of the off button on the alarm. I got up, grabbed my coffee and came to the computer for my morning ritual.
Out came Jimmy a while later with that look on his face!......oooops!.....I didn't shut the alarm off! That sucks because he has insomnia every night of the week and doesn't ever fall to sleep until around 4 or 5 am. It's part of being a Bar owner I think. I hate waking him up with my alarm and I've been good about it for a while now.....but low and behold I had to leave it go off this morning! Damned brain fog!
Sorry Honey!
Well it's Tuesday....let's see what the day brings.
Have a Great Day Everyone!
Monday, July 21, 2008
Day 160
Yesteryday was slow moving. Not the day....just me.
But I still accomplished getting the banners done and I even got the bathroom cleaned! YeeHaw!
Even though I had some insomnia last night again, I still woke up this morning feel half assed ok.
The only thing driving me nuts is the itching and the hair that I have to keep pulling off of my arms. It's falling off of my head and driving me crazy! lol. It gets everywhere. Nothing like having a piece of hair in your shirt tickling your chest! Drives me nuts! lol
Anyhow, I think ducky has return for now. Hopefully he stays the week.
Jimmy found these Ducky's at the Brigg Farm Blues Festival while he was M.C.'ing two weekends ago and brought them home.
I think They're bringing me good luck!
I'll take one to work and keep it on my desk!
:)
Sunday, July 20, 2008
Day 159
He's got a long way to go but he's about halfway through a 24'x8' section. The total building front is about 35'x30'. Now that's a lot of glass!
He's putting the glass on sheets of mesh and he'll apply the sheets to the building front like a puzzle and the grout it in as he goes.
It'll probably take him through the winter to get the sheets all ready to apply next spring.
Lot's of work! I have to get the rest of the building plotted out on paper before he catches up to me! He works like a mad man! lol!
Enjoy your Sunday everyone! I'll spend the morning looking around for Ducky....I'm sure he'll be around soon!
Saturday, July 19, 2008
Day 158
I can't say that I feel too terrible, there's a lot of fatigue reminding me to go slow but other than that I have the "normal" everyday stuff going on like the lumps on my neck, my mouth being a mess and itchy skin everywhere.
I'll take it easy today and maybe it'll get better.
It's amazing to realize how much I used to count on the weekends to get stuff done around the house. My poor house suffers from these weekends of fatigue. I'll have to have Athena come next weekend and pick up my slack.
This weekend, however, I'll take 2 days to get my bathroom cleaned! lol...I go that slow! Couch - bathroom - couch - bathroom.....lol
Enjoy the day everyone!
Friday, July 18, 2008
Day 157
That's another funny thing about tx, sometimes you look good and feel like hell and other times you look like hell and feel pretty good. LOL what's up with that?
Maybe I just lowered my expectations of what feeling good feels like?
No...I think I just know what really feeling bad feels like and I base everything else on that.
Last night I was up and down all night long. That makes for a very long night. Sometimes I think the Nuepogen causes insomnia. I try to take the shot as early as I can, but there are those nights that it just doesn't matter.
I got up this morning feeling rested so it didn't effect too much. Maybe I've just had enough sleep lately to compensate.
Busy day today....thank god it's Friday! .....ummm....sorta. Tonight is Peg. night. Friday's are bitter sweet.
Have a Great Day! Come hell or high water...I know I'm going to!
Thursday, July 17, 2008
Day 156
Wednesday, July 16, 2008
Day 155
I'm still feeling pretty good. Went to bed early last night and that still seems to be the trick for now.
Hopefully it doesn't change next week.
I actually made it to the grocery store yesterday after work! I haven't gone to the store for almost a month, so we where pretty much out of everything. I got so sick of ordering out for food that I had no choice. I wanted a home cooked meal and by god I was going to have one! lol
This morning is nice. It's a beautiful day out and I'm feeling good.
:)
Tuesday, July 15, 2008
Day 154
Monday, July 14, 2008
Day 153
I spent most of the time lounging around. The boardwalk was next to impossible for me to walk. Fatigue knocked me out and the sun was a killer. Even though I bought an umbrella and stayed in the shade I still managed to get on hell of a sun burn. Tx makes my skin ultra sensitive to the sun. I never burned so easy in my life! Now it's moisturizer city for me! lol
It was nice having a mini vacation with the kids. But still I missed Jimmy. I'm glad the weekend went fast. It was nice to get home.
I don't think I'll be planning anymore vacations while on I'm on these drugs....it just takes too much out of me.
Friday, July 11, 2008
Day 150
Thursday, July 10, 2008
Day 149
Yesterday was pretty crazy at work. It made the day go by fast!
By the time I got home I was exhausted. I got the poker scores ready for the bar, ate supper, took my Procrit and went to bed.
It's not a very exciting life that I have this week but at least I'm still feeling pretty good.
I'm still taking the 1/2 Zoloft. I think it might be helping my mood....but who knows, my feeling better may be doing it too!
Whatever it is I hope it continues!
Wednesday, July 9, 2008
Day 148
Yesterday was sort of busy at work so the day went fairly fast. Came home last night and went to bed early again. This time I had to. I got so tired all of a sudden that I started seeing double...lol.
I slept another 10 hours and woke up this morning feeling good again. I guess I just need all that sleep. My fingers are crossed that this continues.
I'm taking my daughter and her friends to the Jersey Shore this weekend for a Graduation celebration. I'll stay the weekend and leave them there. They're staying until Tuesday. I'll just spend my time lounging on the beach with loads of sunscreen on!
Jimmy has the Briggs Farm Blues Festival to M.C. this weekend. I can't believe it that time already! I was going to go on Friday night but I've decided to pass. I get some sleep before we go to the shore instead. This will be the first time I've missed it since Jimmy and I have met. Kinda sad I guess.
For now I'm still feeling Ducky! Thank God! :)
Tuesday, July 8, 2008
Day 147
Monday, July 7, 2008
Day 146
The weekend went too fast. I spent most of my time on the counch and you would think that the days would go slower that way....but they they're not.
I did pretty much nothing yesterday. I layed around trying to get energy up but the energy wouldn't come. So it was a lazy Sunday.
This morning I would rather still be in bed. Waking up is slow, but that's become normal.
I don't feel too terrible so I'm hoping that the day will be good and go fast. I'll go to bed early tonight to see if it helps get me through the week.
I'm hoping that my friend Ducky visits soon...
Sunday, July 6, 2008
Day 145
Saturday, July 5, 2008
Day 144
Friday, July 4, 2008
Day 143
What's best is that I don't have to go to work! Thank God because waking up this morning has been ruff. I stayed in bed until 9 and then it took me another hour to get my head clear. I took a whole Zoloft last night and I don't think I'll do that again...I think I'll just stick to halves because I hate the way it makes me feel.
This week was something else. I forgot to mention that I did actually get something accomplished this week. I had an Unemployment appeal hearing to go to on Monday for an ex employee who was terminated from work. She came with a lawyer and I still won the case! So I did accomplish something this week!
The day is all foggy and raining. It looks like I feel.
I'm hoping that I can get something accomplished with my daughters help today. Laundry needs to be done and the house needs to be cleaned. She stayed the night last night because she was working late downstairs at the bar. I'll talk her into giving me a hand. Hopefully it won't turn into a headache as she still has too much teenager in her!
I'm working hard at feeling better. I'm trying to stay positive and I'm going slow.
Tonight is Peg. night. I hope this one is easier on me than last week.
Hope Everyone Has A Wonderful 4th Of July!
Thursday, July 3, 2008
Day 142
Yesterday was somewhat better. The fatigue dragged me down, but my body wasn't as sick as it has been. I really think that the extra sleep helps. I do hate going to bed early as I feel like my life may become nothing more than work and sleep. I guess that's just my sentence for now....6 months to go.
I didn't mean to, but I got Jimmy very worried the other night. I was just so tired of being sick and all I could was sit there and cry. It's hard when you're almost half way and you've had such a hard time of it so far. Looking forward, you have just as far to go as you've come.
It's like standing in the middle of a very long curved tunnel and you can't see the light at either end.
That's just the way it feels when I'm real sick for days on end.
So the other night after I went to bed, Jimmy got a hold of Terry Lee. He just didn't know what to do with me. He wanted to get me help from someone who had been there. He picked the perfect one to call. If anyone has been through it all, it's Terry.
Terry called last night. It was so good to hear from him. Just listening to him recount what he went through reminds me that I could have it worse. My God he went through hell!
He also truly understands. Talking to someone who has been on these drugs is such a support.
You just can't tell someone who hasn't been on these drugs how you feel. They just can't fully understand what this stuff does to you.
Jimmy did the best thing possible, he called Terry and like a wonderful friend, Terry came to my rescue.
Thank you Terry! I needed that!
And thank you my love for calling him. You are a beautiful Husband!
This morning after Terry's phone call and a good nights sleep, I'm pulling my boot straps back up again and I'm marching forward.
I'm going continue to take the Zoloft...it'll take a few days to start to work but hopefully it'll help keep me out of that funk.
We started this, we may be in the "no man's zone" right now, but we will finish it!
All I need now is to find my good friend Ducky......
Wednesday, July 2, 2008
Day 141
I slept 10 hours last night and I think I could really sleep another 2 or more.
I got the my counts back from Hershey yesterday and they seem ok. I had a different Doctor who looked at my lumps and he agrees with my Doctor that I either had a bacterial infection or I have one and am still getting over it. Time will tell.
To top that off, there's also the chance that I may have been on the arm of the trial that gave me Full trial drug but only half the Pegasys. Now going out of the full trial drug and into full peg., my body will have to adjust again.
Still I'm only at 75 units of Peg and full strength of the ribavirin. I think if they decide to bump my Peg back up to 100 units I might argue. I only weigh 119 pounds now....so how many drugs could I possibly take?
I started back on the Zoloft last night. I'm trying just a half pill to see if that will help. I'll try it again for a couple of weeks and hopefully it pulls me out of the funk I'm in and doesn't hit me with more sides.
At least my Lymphocytes are good. Nurse Sandy said that Roche has been giving a drug to help those with low Lymphocytes. The last thing that I wanted was to have to take yet another drug!
I'm happy that the Nuepogen and Procrit are doing their job....but 4 injections a week are enough for me!!!!
I think I'm starting to feel better today, my fingers are crossed.
Tuesday, July 1, 2008
Day 140
I took the Nuepogen last night but they had me hold the Ribavirin until we get the blood test back this morning.
I hope my counts are not dropping again. I just feel really bad right now.
Doctor thinks that the lumps on my neck are from the drugs. It seems that I may just have to deal with them until this is over.
I'm fighting to get moving, fighting to feel better this morning....fighting to get ready for work, but all I really want to do is go back to bed.
This Tuesday...outside of the bone aches I should start feeling better by now.
I hope that I hear from Hershey early.