A Highly Interesting Post Without a Title to Match

23 May

I am dragging something fierce these days.  Please excuse my lack of regular updates.  Though the web site is not current, the need remains painfully current and I appreciate you giving me the gift of your time.

There are four key areas I want to address in this post:

About current health status:  I appear to be having a relapse.  This is horrible, horrible, awful news.  Unless, of course, you are a Pollyanna, sun’s always shining somewhere optimist like I am.  Here’s how I’ve kept that frown upside down: a distinct relapse may mean that I have not yet transitioned into a more progressive form of the disease (SPMS) and am still possibly in the relapsing/remitting form (RRMS.)  This would mean I am an even better candidate than previously thought for HSCT, and I was already a pretty awesome candidate.

  • What this relapse looks like: I am using my cane anytime I leave the house now because my entire left side is weak from the moment I wake up (it used to only get weaker as I fatigued) and this causes me to drift significantly while I walk. Drifting = more steps than necessary and exhaustion before I even reach point B. The spasms in the muscles between my ribs have ramped up to such a degree that I can actually sometimes see my ribs hopping through my shirt, like when I was pregnant and the babies kicked. I am not going to lie, having your ribs in constant spasm is painful. Having that symptom rev up as it has over the last few weeks has been depressing, occasionally agonizing, and always wearing on the psyche. Rib cage muscle spasms are joined by an angered sciatic nerve. It is worth noting that potent and persistant pain makes me funnier than usual and I have been HILARIOUS lately.  I have other new symptoms, but these are the ones that made me call the doctor (who had already mailed me a post it note reminding me to come see him.  How sweet is that?)
About Tuesday, May 29  neurologist appointment:  He wanted me to come in “immediately” when I called, but I convinced them to let me have an appointment.  (Here’s where you see how crazy pants this disease makes a person: I didn’t want to get up and go to the doctor because I felt too rotten too move. I value my sofa’s input more than my neurologist’s.  Crazy pants. )  On Tuesday, we will be discussing my options and I will need to be able to make some fast choices based on his clinical information of the extent of this relapse. Here are my three options: 1) Begin immune modifying IV treatments immediately. This will compromise my ability to get the bone marrow transplant this year, as it is recommended patients be off Tysabri (a very finicky immune modifier) for 6 months prior to chemotherapy. 2) Begin a 5-7 day course of IV steroids. This is the course I am most likely to lean towards, though he will likely press me to do 1&2. 3) Come up with $117,000 and book a flight to Israel so I can STOP treating this dumb disease and just get rid of it already.

About fundraising:  Up until now, our number reflected $4000 in pledged money that I will very likely not receive due to economic conditions.  Money in hand is currently: $18,855 – a mere $121,145 from our goal.  This, of course, means that we (if you are reading this, I assume you would like to go ninja with me and be a “we”) need to figure out how to raise that figure as fast as possible.  If you want to do a bake sale at your church in Wyoming, please feel free!  If you want to auction off your family’s heirloom china, by all means please do!  If you know Oprah, please call your girl up and ask her to ask Tom Hanks for a buck.  If you can plan it, call them, write it, man it, please do and have fun while you’re at it.  I get a lot of e-mails from people with ideas that they would like to run with and I just want to make a blanket statement here: Please do!  I am starkly limited in what I can manage as far as hustling.  I need all the hustling help I can get.

About bracelets: we will be sending out another batch of bracelets next week.  I know that (most of) you do not donate because you want a bracelet, but I love to send them, and wish I could do more to express my appreciation.  Because of the postage and handling, we are only able to send them for donations over $25.  I fought for $20, but I had already fought the powers that be down from $50.  The real bummer of that to me is that those five dollar donations mean more to me than you will ever know.  A five dollar donation feels like I just had one more kid in the schoolyard stand up behind me and offer a “Yeah!  What she said!” while we take down the bully.  Know that I love you and expect a bracelet if I ever get to see your face.

It stinks to be chronic like this.  I thought it stunk at year 9, but going on 18 years now… ugh.  It’s just so mind numbingly chronic .  You will never know, and I will never be able to tell you, just how greatly it has blown my mind to see so many have rally to help me see the end of chronic.  Sometimes people like me sit while everyone stands, and we can’t help but wonder if our little piece of quiet daily torture ever drifts up to the radar of the standing.  Thank you for keeping me on your radar, even as I am not in your line of vision.

All my love and thanks,

Amy

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One Response to “A Highly Interesting Post Without a Title to Match”

  1. Sarah S Chicken May 27, 2012 at 8:55 pm #

    You can do this! And I’m so glad you got some slurpees to see you through. Thanks for your transparency. We love you.

Honest Truth About Me: I'm going to need a lot of cheer leading to see this through. Your comments and encouragement mean the world to me.

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