12 March 2009

Pharmacy Update

Good News
  • doctor's office is on top of things
  • they have a call in to a new pharmacy who specializes in these drugs
Bad News
  • it will take 5 business days to process the order
  • may not be able to start treatment next week
  • feel like I am wasting my time off due to what seems like an endless wait
Guess I will go back to my knitting...


Sorry, I guess this is a rant. But after spending over a week hunting down the prescription for the Rituxan. I am very very annoyed!

It really is a simple process. Doctor gives you a prescription, you get it filled. For this, there are a few extra steps, but not too many.

  • Must get health insurance pre-approval = CHECK
  • Doctor faxes approved prescription to pharmacy = CHECK (done last week)
  • I follow up and pharmacy mails me said prescription = NOT CHECK
The pharmacy did not get the fax! They have not got the fax now 4 times! Yesterday they FINALLY received the fax, said someone will call me back that afternoon to schedule delivery. Today, still no call. So I call back. Guess what!?!? Because of the type of health insurance I have and the type of treatment, the doctor has to order the drug from the manufacturer! WHAT?! At that moment, when I heard that, I felt as if I was Linda Blair and my head was beginning to spin.

How long is this going to take now? Delivery from the manufacturer? The doctor must order it? All of my PLANNING has gone out the window. And of course, the doctors office is on lunch when I find this out. So now I must wait for them to call me back. They are really beginning to love me there. Can you fill this form out, now can you make this call...

Scheduling the start of the treatment is not a problem as long as I give 24 hours notice, but they only do treatments Tuesday through Thursday. So what's a girl to do???

I really want to start treatment next week.

I want to get better.

I want to get better...

Frustrated in waiting

Breaks, Time Off, Leave of Absence, Disability

This past Monday was my first day on my break. Err...I guess disability leave... That's right! If you did not know it, I am taking a leave of absence from work, to focus on ME! This will give me time to get the right treatments, get healthier and just breathe. I know it is the right decision to do this, but it really is difficult.

Difficult to have to admit to being THAT SICK
Difficult to not go to work, when your brain and body still function
Difficult, when you look "normal" "healthy" for the most part
Difficult, when you have to look that dirty word DISABILITY squarely in the eye

Friday was my last day of work and I had to wrap a few things up. I really should not have stayed at work until 9pm. But I did. Not because the work was all that much, but because I simply did not want to leave. I did not want to have to deal with anything. I realized as I was walking out the door, tears streaming down my face, that I had used work as a crutch for the past two weeks to help me not cope with what was really going on . That walking out those RainForest doors meant my barriers, that I had so nicely put up in my corner of the RF, came crashing down. Even once I realized what was going on, I could not stop the emotional rollercoaster that followed. So Friday was really not a fun night. It was a pity party! And I was the guest attraction. YAY ME!!! The bf was awesome. He just held me and then when I was calm took me around the corner to the local Denny's to carbo load - mound of french toast, hash browns smothered in cheese - and pound hot chocolates. Oh the hot chocolates they did come!

I am hoping the pity parties are out of my system. But I think they will be back at some point. Just hopefully not for awhile. Maybe they should take a break too.

I was really worried what I would do to fill all my daylight hours. What does one do while on disability but their disability is intermittent? And after a few days of it, realized this was the right decision. As I have spent most of my daylight hours on the phone, hunting down prescriptions, filling out paperwork, sitting in doctors offices, all to get everything organized and planned out. I really want to start treatment NOW!

I find that mornings I am at my best. My hands are working for the most part and I feel good. Usually around 2pm it all starts going down hill. So I take a break and after a few hours of R&R I can use my hands again. So to keep me busy beside the daily office work, I have been reading and knitting. And have actually made some great progress on a pair of socks! The Berry Season sock!

I even managed to finish the heel flaps while at the oncologists office yesterday. Which BTW went well. Looks like I should start treatment next week. Just as soon as I get the meds (which is more of a headache than it should be). But the treatment is just going to be unpleasant. Supposedly during the first few infusions, there is a high chance you get an allergic reaction to the drug. YAY FUN! Thankfully, I only have to do this twice. I just want it over with!

Ok, must re-call pharmacy and find out where's the Rituxan?!

05 March 2009

Picking Your Superpower

Wouldn't it be great, if you were a superhero and you could pick your powers? I have been thinking about this quite a bit this week. Mostly, because I am wrapping stuff up at work and there is never enough time. I find that I am being very productive, but items have a way of slipping themselves into the day. Chasing files down, calling tech support because administrator privileges are not really administrator privileges?, writing SOP's and all that last minute training and the transfer of knowledge. Secretly, it is a little fun. Running from place to place, getting things done. I just find that time is limited and that I really need a nap around 2pm.

The other super power I would want, besides the ability to stop time. I mean, really, what more could one ask for! With time stoppage, anything is possible, right?! But, no, I want more. My BLOG, I get to be demanding!

So here it is: I want the ability to pick the body part that gets to act up, that by the end of the day is swollen and tired. I am over the whole swollen elephant hand look and feeling like walking on pins n needles. Now, I know this is silly, but I really do want this...Alright, here it is, what I really want...so what I want, is my ass back! I would like all of the swelling to just move from the hands and feet and go straight to my butt. This would save me time! No more running around and having to stop to pull up my pants. All of my pants would fit (at least better than they do now) and I could use my belts. Weight loss is great, I am all for it, when it is healthy and not done because one's body feels like doing itself in.

Signing out now, thinking happy thoughts of days when the pants will fit again and there will be enough time in the world to get everything done.

03 March 2009

Wasting Time

With everything going on, I have quite a few decisions to make regarding my own personal health care, work, prioritization of things. And in my head, it seems like it should all fall within a nice comfortable time line. Imagine GIANT GANT chart in my head with things like doctors appointments, work appointments, chores, SLEEP, NAPS, FOOD, etc.

Time lines and plans make me happy. I really like these things. I am not always great at following them, but they give me comfort. This week has been a little uncomfortable as I am realizing I can not plan for the unknown. I have no idea really as to the actual START date of my treatment, for instance when do I need to take days off work, how many days, etc. What will the drug do to me? Then there is dealing with my crazy hands which keep acting up. I was hoping that they would stop swelling, but every day it ends the same, with giant pincer claws as hands.

But today, I had a doctor's appointment. It was in the "schedule". But Quest did not get the lab work transferred to the doctor in time and fax machines were not working, and I ended up getting a bit of knitting done at the doctor's office while I waited. But now I need to schedule another appointment to make up for this one. Oh well!

Later today I find out that the steroids are keeping some things at bay, but not everything. I really need the Rituxan treatments to start to see if they will work and keep the pincers at bay.
Great news = all is approved by the health insurance, the powers that be!
But the Rituxan should work for the RA, not necessarily all of the other pieces. I am a little concerned. But there is a worry about over exposing my body to too many drugs at once.

So as you can see, the time lines in my head are constantly changing. I am not sure how all these pieces will fit in. I do know that I will just have to make time. It will all work out in the end :D


My home computer decided to join in on the drama. It was jealous and needed some TLC. To prove this to me, she got a little virus. And for those of us not very computer savy, like me, a little virus is a lot a pain in the butt. Best part, I had the same virus on my work computer. It was not until Monday evening that my home computer was finally virus free! YAY!!! No more disgusting talks about re-installing OS.

This weekend was rather awesome. And it is all because of you! I have to say I have amazing family and friends who are supportive in ways I could not even imagine. Thank you to everyone! Thank you for the calls, emails, IM's, cards, flowers, candies, and warm thoughts.

The work week ended with Girl Scout cookies. What a way to start the weekend. What is better than GS cookies???

Then there was an impromptu visit from my family and they brought my 2 1/2 year old nephew over. He was great, giving lots of hugs and kisses and he even brought me more chocolate and flowers. It was just nice to relax and play and not think about any of this craziness.

The next day, the bf and I are trying to be productive, but really sucking at it. I managed to lay around and read while he played video games. I think it was just what we both needed. And then we got the surprise in the mail. An Edible Arrangement! This thing was just all full of awesome as you can see!

Doesn't this thing look so scrumptious?!

It really was yummy! Many thanks to MKT, Barb and Miss T for the wonderful surprise. I had many ideas of sharing these luscouis strawberries and fruits with others. Maybe bringing some in to work on Monday... But then the not sleeping happened on Sat night... And the hunger... And a 3am snack of chocolate covered strawberries just hit the spot! It really was better than consuming GS cookies all night. (I can't believe I just said that!)

The weekend just kept getting better and better. Even without really getting enough sleep, I felt good. I was able to catch up with some good friends on Sunday who I had not seen in a while, one visit was planned and the other was a surprise from Florida. It was really nice to visit with people, face to face.

Chores are behind, I am still not sleeping, but I am feeling better thanks to all of the support.