Musings

I heard the song "Isn't Ironic" today. First, let me say while I hate the song I have to admit I owned the CD back in the day. But it made me think about all the people who get bent out of shape that not every scenario being sung about is in fact Ironic.

Irony is not lost on me. I'm living and breathing irony and I think if tomorrow I sat down to write my book the first sentence would begin "The irony is not lost on me. The very thing that diagnosed me was also my cure."

When I got sick the first thing Dr. G did was schedule a lumbar puncture or spinal tap. When I saw Dr. S in Maryland he whipped out a safety pin and began poking me every which way. And when everyone put those results together I was given my diagnosis of a fairly rare and painful condition. Fast forward six months and in the office next to mine driving the car parked next to or one space over from me or my Mom was Dr. A with his needles ready to give my life back. The answer was there the whole time. I've learned through this process though that I needed to walk through it to appreciate and understand and to get to a point where I could accept that the answer was there. That common practices for me just weren't going to work. That I needed to be OPEN to new and different and that I actually prefer living this way. Life is a lot easier when you let go of some of those judgements about everything. Its also helpful to learn to tell people how you feel, set boundaries, and redefine your expectations of others as well as of yourself.

Being in acupuncture 2-3 times a week I have some quality time alone with my thoughts. I often think of writing my book and what a dedication page might look like. I imagine it would go something like this:

During this journey I have met such wonderful people and feel blessed to know that they are on my side. First to the people and teens of St. Matthew who prayed for me thank you for all the hard work! Daily I return the favor. Secondly, to the friends and family who stuck with me during my successes and my pitfalls. I know I was not always easy to love but thank you just the same. I love you back.

To Team Torres: The doctors and professionals that gave me information, hope, treatment, and health I am forever in your debt. To Dr. K for planting the idea in my head that I might have something more serious going on. Dr. G for being my all around champion, sticking to your guns and making sure the follow through happened. To Dr. BS for poking me with a pin and allowing me to cry in your office so that I could get the right diagnosis and to Dr. S for being the quarterback of it all. You were open to all ideas and provided me the right balance of comfort and doctoring. To Meg for teaching me how to dust myself off and to Jolene for teaching me how to call the plays correctly. Last but not least Dr. A who gave me my second wind thank you for putting me back in the game.

And the biggest Thank you to my husband who witnessed the entire journey and had to live it with me. Sometimes the best thing to say is the simplest. I love you. Always have. Always will.

Another Picture

My special vocabulary expands. This time into the world of diagnostic imaging which is actually somewhat helpful for my job. I obtain insurance authorizations for diagnostic imaging and sometimes that means finding certain equipment for patients. How many of you knew there are different types of MRI machines?? Beyond Open and standard?

I have to have a 3T MRI (3 Tessla the measurement of the magnet strength) and found out that a hospital much closer to our office has one such piece of equipment. I also found out that they do not have certain types of coils that might be needed for other patient's but thats totally unrelated to my journey. What's a coil? I think of it as a magnafying glass for the picture. generally its a tubular device they put around the body part being imaged. In my case I get to wear a head coil which involves first covering my ears with ear plugs, then headphones, then the coil, then adjusting it so my head can't move. Sometimes there is a mirror on the coil so that I can trick my brain into thinking I'm not being shoved into a tiny tube and am really looking "out". (This only goes so far and then comes my anti-anxiety medication. Too little I freak out, too much I fall asleep and screw up the test because I'm moving.)

I've had 6 MRI's in the last 12 months. 4 of which were for my brain. This test no longer freaks me out and there is something to be said for conditioning. However, it is now the results that make me anxious.

I saw Dr. G my neurologist on July 1st. The report seemed to describe more uptake (the disease) in new places but overall my disease seemed stable. Which is good and bad news. Good that I haven't gotten worse. Bad because I'm taking steroids and they aren't helping. And suffice it to say I gave up on the Gluten Free living. I still think it is beneficial but I'm having a hard time staying committed. And so my husband and I decided it might be time for some more drastic treatment options. (I'm going to lobby for whichever causes the most weight loss!) While my pain is under control the reality is that I'm still ill. Dr. G believes that the pain will stop being initiated when we get the diease in remission and that my dry eye will go away as well.

I'm hoping that also means the insomnia thats kicked in recently will as well. I see Dr. S in August and will repeat the MRI in September to see if the changes are noticible.