19 April 2010

Things that make me smile :D

Trying to do anything this weekend but think of that which ails me, led me to many laughs with friends and a weekend of gardening fun!

And we found the artichoke plant has artichokes!

And a silly squirrel was caught stealing tangerines.

17 April 2010

A Good Scare

Rituxan treatment yesterday. As the treatment was finishing up, I started to lose feeling in my arms and legs. It was a weird feeling. It is hard to describe. The areas between my elbow and hand on both arms and between my knee and foot on both legs, had a strange pressure sensation. It felt as if that part of the body was not there. I could walk and use my hands, there was no signs of a lack of circulation in my fingers or toes. It was a strange paralysis that would occasionally creep further.

I was worried enough to call the on-call doctor at the clinic, and luckily my doc was on call. He was definitely concerned as this is not a typical side effect with the drugs I was given yesterday. And I was told to go to the emergency if it proceeded to get worse and did not show signs of relief by morning. What a scare!

Over time, the feeling of paralysis left my legs and by morning it had left my arms. Now I am left with a tingling sensation running up and down my arms, from shoulder to fingertips.

I am scared. The lack of sensation, the lack of control that came with my temporary paralysis was unnerving. I am planning on calling the neurologist next week to see what is going on. His secretary probably already thinks I am crazy, as I kept calling her last week to get some information. Oh well. This call needs to happen. Crazy or not.

As scared and worried as I am, I am really thankful for what I do have, for the life I still can live, for the strength and functionality I still have in my body, for the love of my bf and my family and friends. Yesterday I was just reminded how quickly it can all go away. So tonight I am going to celebrate life with friends. And continue this celebration as long as I can.

I still have a lot left to live for!

09 April 2010

New Doctor

Today I met my new doctor. She was really awesome. She did everything one would expect of a doctor, but that my previous doc failed at.

We talked for an hour. About my medical history, how I was doing and any little minor annoyance she wanted to know about. She even touched me. She treated me as a whole person. Not just a paycheck. It was nice to find a very personable doctor.

The good news is she thinks I have been misdiagnosed, that is also the bad news. If she is right, things may get more complicated down the road, it may be even harder to breed, but the medications will not need to change. If she is wrong, it is still the same game, same meds and still there is always questions about breeding. I do not know which I wish for. Both options have interesting paths and both have many difficult unforeseeable moments.

Right now, I have committed to her to go for further testing. To see what is really going on. Her reasoning for the further testing is simple, to check out those minor annoyances in my life, which to her could potentially mean other issues.

So I will keep my fingers crossed and hope for the least interesting path, whatever that may be. I love adventure, challenges and puzzles, but I think I have had enough of these health adventures to last me a little while.

08 April 2010


Last week I fired my doctor. My rheumatologist whom I have been seeing for almost 10 years. It was a really hard decision, we had a relationship, it was like breaking up with someone. You know all their faults, all their blessings, why they are good for you, why they are bad for you; yet it is still difficult.

In this case, it should have been open and shut. I should have left years ago, but I could not. I could not waste the time to find a new doctor, I kept thinking I should give him one more chance, one more chance to change for the better. But he never did.

The major issues were:
  1. I was treated as if I had the plague, he stayed across the room and never came near me
  2. I had to remind him about health decisions he made about me in our last meeting, when he had his written notes in front of him
  3. I was being lectured about health care reform and how he was going to go broke, etc because of it
  4. and most importantly, any discussion regarding potential pregnancies was disregarded as null, since I am an unwed woman
See, open and shut. Why did I not run screaming sooner? Why did I stay? Especially, when I live in an area with choices of doctors? Comments of laziness, scaredness, worry of change all come up.

Now that it is done, I feel relief. And excitement. About what the next doctor will be like and how that will affect my health, my life.