Sorry it's been so long since I last blogged, but I've been feeling pretty mediocre and I didnt really have a lot to say. But now that I'm back in school, I'm ready to start blogging again!
First and foremost, I finished the 20g of fat medicine -- thank god! -- no more smoothies, cheese, avocado, nuts, peanut butter, or fried stuff - woo! Dec 16th was a glorious day and will be forever marked in my calendar as a holiday!
Secondly, since about Thanksgiving (week 10 or so), my hair has been falling out. While it's hard for anyone that doesnt see me every day to notice, I've lost probably about 2/3 - 3/4 of my head of hair. It's a good thing I had a TON to begin with.
If you've never had all your hair fall out before here are some of the benefits:
- constant tickling from the phantom hair under your arm
- a perpetual drain stopper from hair balls = similar to a spa pedicure when you're standing in the shower
- really hip, funky fresh bald spots (i'm trying to start a trend...i think it will really catch on)
- you get to dig out that old barbie comb you used to use when you were little, because you cant use a brush
- you can finally achieve that coveted - straight-as-a-board-absolutely-no-volume-whatsover look
- your washing machine lovingly ties hair bows onto all your underwear, wrapping them like little furry presents
- you can practice your magician skills because you can ALWAYS pull giant hair balls out of your sleeve
- everyone around you gets a stylish new outfit made exclusively of your hair
- tingly-minty-fresh shampoo that makes you feel like your rubbing toothpaste in your hair but costs 1000% more
- and finally you get to relive the glory days when you were 0 - 12 months old and everyone used to comment on the incredible softness of your wispy, thin baby hairs
When expressing my initial shock to the doctor, she kindly said --
"Well, at least it's winter, I swear there's some really cute hats! No really, go buy yourself some hats."
Thanks a lot. (little does she know that hats on a balding head feel like a crown of thorns)
(she was just trying to be nice, but losing all your hair is a touchy subject....)
My main issue in recent times has been dealing with the doctors/pharmacists/phlebotomists.
Here's a brief rundown --
Bloodwork problems.
Every week for the five weeks I was home, I got to call and remind my doctor's office to
a) send my lab request to the tampa lab
b) send my lab request to the tampa lab
c) please call me with the results so i know whether to take the neupogen (dependent on my bloodwork)
d) again, please call me with the results
e) remind them to please send the lab request to the tampa lab
All of that being said, sometimes it got there, sometimes it didnt and weeks later, I'm still waiting on some old lab results -- cool.
Pharmacy Problems.
Finished incivek treatment, new meds came to my house in tampa just fine...shockingly.
Another month of meds was also scheduled to come to tampa before i left to come back to austin. the pharmacist said she needed to talk to me about my prescriptions before she could send them out (now come on lady, we've been doing this for 4 months...)
Here's how the conversation went --
"Hi Marina, I need to discuss the medications you're taking with you"
"OK sure"
"What do you need by this week?"
"Just the interferon, I have a lot left of the ribavirin"
"OK well, I'll send that out today, but we're having trouble getting authorization for some of your meds"
"OK?"
"What about the incivek?"
"What do you mean what about it? I don't take that anymore."
"YOU JUST STOPPED TAKING THE MEDICATION? DID YOU CONSULT YOUR DOCTOR? WHY WOULD YOU DO THAT?!!!"
"Um, well, it was a 12 week treatment? You didnt send it to me last month? I don't know?"
" Oh, well I'll have to talk to your doctor about that."
doctor phone call to tell me that the pharmacy faxed in a request for ribavirin and they were changing my prescription to 800 mg rather than 1200mg
package arrives. no incivek. shots and 1200mg ribavirin pack?
Pharmacist calls me to inform me that the insurance will not cover another month of incivek for me because it was only a twelve week treatment. (OH YEAH?! WHO KNEW?! jerk.)
I inform her that she sent me the old ribavirin pack -- at which point i can hear a tremor in her voice as she realizes that she sent me thousands of dollars in meds i wont take -- I told her i hadnt opened it and agree to send it back.
New ribavirin arrives in texas. old ribavirin goes back to the crazy pharmacy.
Pharmacy Billing Problems.
pharmacy billing department calls to get a new cc on file because the old is declined. Mom gives them the new medical reimbursement card number.
pharmacy billing department calls to get a new cc on file because the old one and the new one are declined. i give them the amex.
lady informs me that i have a balance of 40 dollars. i ask from what? oh, because your cc never went through each month....
( now wait a second, every month they call asking if its ok to bill the credit card on file. and every month, i say yes. wouldnt you think it would have been important to mention during month 2 or 3 or 4 that the card has been declined prior to continue sending me tens of thousands of dollars of medication each month...i mean come on people!!)
pharmacy billing department calls to get the copay for the new ribavirin they are sending out. i inform her, im not paying it because it was their fault they didnt wait for the new prescription from the doctor before sending me the wrong meds. luckily she agrees.
Doctors office problems
- I only get return phone calls on the 1st of never.
Health Problems
When I finished the Incivek, I was able to stop taking the nausea medicine because I had simultaneously decreased my ribavirin dosage from 1200mg to 600mg because I was too anemic. Now that my red blood cell counts are back up, they increased the dosage to 800mg. Since they increased it, I went from one pill once a day, to two pills twice a day, making me nauseous again, so I started taking the nausea medicine again.
I still can't walk very far without getting winded.
The dark circles under my eyes are darkening with every passing day.
I am so pale I could be mistaken for a vampire at any given moment.
My skin is so sensitive that everything makes me itch, or burns, or makes a scaly patch.
Still can't really eat any raw vegetables/fruits/meats (though I've been eating some vegetables immediately after i take the neupogen because i know my counts will be up right then)
Other than that, I'm hanging in there. Overall, I don't feel that bad just tired a lot and I have spells where I feel like death. Only 6 weeks left! I'm done March 9th! Woo hoo!
I'll do better at keeping you guys posted. Sorry!
Keep me in your thoughts and prayers!
Until next week...
A fun tidbit: The other day I burped after I took my ribavirin and it blasted sweet flaming toxic waste bile up my throat and into my nose. I felt as though I had incorrectly used my neti pot with sulfuric acid. And that I was ready to morph into a dragon at any second and breathe fire all over my living room....lucky meeeee!
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