Friday, June 29, 2007

Day Two After Infusion: Ugh!

Whew. I feel like I got the wind knocked out of my sails. I barely have the energy to write, but I really need to.

I finally had another Rituxan treatment on Tuesday, and it went rather smoothly. The only minor blip was that my blood pressure fell to 86/60 and they couldn't wake me up. That's what happens when you give me 50 mg. of Benadryl!

I fell asleep and the nurse tried to wake me up to take my vitals. It took a few times...and her face was white as a ghost when I looked up at her and said hello!

I actually finished my treatment in six hours, and went home and had severe sweats and a headache. I could hardly sleep all night, and was on hyperdrive the next morning...thanks to the steroid drip! My feet and hands were swollen, and I ran to the bathroom a hundred times an hour to get rid of the fluids.

Today I felt like I got hit by a truck. Everything hurts--I could barely lift my head off the pillow. I slept on and off, even during the thunderstorms. I guess the high temps and high humidity isn't helping me either.

I am so tired of being tired, and decided to write. I pray that tomorrow brings some sunshine and less pain to my day.

Adios for now!

Thursday, June 21, 2007

Five Days and Counting

Hello! Today begins the official first day of summer...the longest day of the year.

In five days I will be going through my next round of Rituxan, with hopes that I will get to enjoy the summer months! My doc feels that I have weakened substantially, and said my blood levels are not good. But these next two doses will hopefully make a positive impact.

I got to go to the beach on Sunday and Tuesday this week. I have quite a nice tan so early in the season...and I plan on spending many more days at Field 5!

Sal and I are driving to NJ on Friday to attend a friends wedding. I bought a new outfit...size 10! The weight is still coming off...slowly...but everyone has noticed the difference! Nice compliments!!!

I am so exhausted...I can barely get out of bed in the morning. I am pushing myself to my limits. I have to.

Came across an interesting slogan today, and I think I will use it from now on -- THERE IS LIFE WITH MYOSITIS, IT'S JUST DIFFERENT.

Tuesday, June 12, 2007

A Wish Come True

Great news! The phone rang around 9 pm this evening. It was Dr. Rumore's office...my rheumy. I have been approved for another round of Rituxan! Hooray.

I am scheduled for Tuesday, June 26 and Tuesday, July 10. The medication has already been delivered to his office and has been paid for by the pharmaceutical company!

My health has been changing dramatically over the last month, and I pray that this next treatment works as well as the first.

We had a really full weekend. Friday was Jarrett's graduation from Middle School. Since his class is so large, they split it into two graduation ceremonies! Luckily, he was in the first group at 5:30. I can't believe how grown up he is...and that he'll be attending North Babylon High School in just a few months. Where did my little boy go?

On Saturday, we had a big party in the backyard. Friends and family gathered in and around the pool, despite the weather. We had it catered, which was a wonderful thing! It was an old fashioned barbecue...from beginning to end.

Then on Sunday, I was honored at the 17th Annual Long Island Pride Parade as the Female Grand Marshall. Sally and I rode in the third car...a blue Buick Skylark convertible from the 60s. As we waved to the crowd, I felt so very proud of all I have been through and what I have accomplished.

I am so blessed!

Wednesday, June 06, 2007

No Time to Rest!

It is the second week of June!

Our son graduates from middle school in two days, his party is on Saturday at our house, and then I will be riding a float at the LI Pride Parade as the Female Grand Marshall on Sunday. Quite a full weekend, right?

Unfortunately my health is going downhill pretty quickly. It is a little more than three months since my Rituxan treatment, and I am becoming extremely weak. I have a few calls into the docs office, but it seems the pharmaceutical company won't send the medication until the six month point.

I have an appointment with Dr. Rumore on the 18th, and I am certain he will have to make a plan "B." My legs are very weak...and I walk with a noticeable limp. My left hand cannot grasp things very well, and tonight in the shower I pulled my left shoulder. All I did was soap up my body and ouch!

I did see my ENT last week, and he feels that alot of my inflammations are due to allergies. He changed my medication from Allegra to Singulair. He also said my deviated septum is completely closed...guess its time to rethink that nose job, eh?

Today did mark a milestone, however. I officially lost another five pounds and weigh under 140 lbs! Hip, hip, hooray! I actually fit into a size 10!!!

Tears started running down my cheek this morning after I weighed myself. My emotions are beginning to take hold of me, once again, and I am fighting to stay in check. I must remain thankful for each day that I am here, and keep moving forward.

One step at a time!