What the hell?!

I woke up this morning with pain in my knees so terrible I can barely walk!

WHAT THE HELL IS GOING ON?!

Yesterday's treatment went well.

So well, in fact, I managed to stay awake, leave, go to LL Bean to buy a bag for my oxygen to combine the O2 and my purse, and then go get a much needed haircut from Andrea at MR. T's.

I went home, took a much needed nap, and then managed to do a pretty project before falling asleep.

I fell asleep only to wake up at midnight with knee pain. I took some instant morphine and went back to bed.

I woke up again at 3 am with knee pain so severe I couldn't sleep. I reached for the morphine and fell back asleep.

Fast forward to 5:30 am, I woke up, in pain, and decided to test these knees that have kept me awake all night.

They hurt so bad I can barely walk!

I wobbled around my house almost in tears before I reached for my morning usually morphine and more instant morphine.

I now understand why the nurses get nervous when I am in pain. It takes a lot to alleviate my hurt.

Four years of treatment will result in a tolerance.

This IS NOT a known side effect of my treatment.

There are not really any known side effects of my treatment.

It's a new treatment with a new medication (uvidex). Most people report fatigue. Some people report headaches.

I am also receiving treatment on a new machine that has only been utilized a month. This shortens the length of therapy from 3-4 hours to 1 hour 16 minutes yesterday.

Changing the length of the procedure is a relatively unstudied variable. Who knows what problems it could cause? Or what benefits?

What I am happy to report, focus on this people, is that last night while I was waking up with knee pain, my lungs were not rasping. I had a a little wheeze.

This morning, I am not rasping at all. I am not even wheezing!

Just another example of the double edged sword of treatment.

Would you lose your legs to save your lungs?

Would you lose your lungs to save your life?

I thought, maybe, with all this happening, I should send out an email update to the docs. I have ideas of how I'd like treatmet to go. I'm feeling good. I want the steroids decreased. That would be FABULOUS. So I blasted them an email:

Hello, This is Hillary St.Pierre. I started photophersis on Weds and wanted to send a quick update regarding my status. My tunneled central line placement was uneventful last Friday; however, the line has all ready been threatening to clot despite my daily flushings. Two lumens were heparanized overnight Weds but still posed a problem on Thursday and the third line did not draw back at all. I'd like to consider taking a baby asprin to prevent more problems.

My first day (Weds) I experienced severe fatigue with chills post treatment. A CMP was ordered before and after yesterday's therapy. Yesterdays treatment, however, was uneventful.

This morning, unfortunately, I'm having severe bilateral knee pain. It's required 15 mg MSIR q 3 hours through out the night and I still rose barely able to walk. I've taken my 60mg MS Contin to control the pain and function. Who knows where this came from, but I can guarantee it wasn't from crazy Hillary skateboarding on a half pipe.

I'll watch this.

Now, for the good news, my lungs feel great this morning!

The mucous and chronic cough are alleviating. My SOB is improving. I'm not sure whether to attribute this to an infection clearing, but I don't really care. Something is working!

I am hoping to taper my prednisone next week from 40 mg to 30 mg. The side effects of the steroids are driving me crazy. My face is so swollen it is painful. I'm constantly anxious.

I would appreciate any guidance or requests for testing any of you deem necessary before I drop my dosage another 10mg.

Thank you so much, take care, and have a great weekend.

Hillary

Hopefully, this will get a response to my questions.

Now that my knees have been drugged into submission, I'm feeling good about today.

My grant from Cameron Seimers is coming in this week. The first purchase, a digital camera for Andy. I haven't been able to see the little guy with my own treatment starting, but I'm going to swing up today.

Xander has a little infection that has kept him away.

We did not get the grants for the Charlestown Police Department Energy Efficient upgrades. The town passed building the department, but no grant help for solar anything.

I'm disappointed. I really wish I could receive feedback as to why we were rejected to improve my technique.

The project had a 5 year pay back period! It would have saved $5000 yearly in utilities!

Who knows.