The Nerve!

I had a Neurologist appointment with Dr. G today to get the results of last week's MRI. (Which went pretty well - no tears and only a fleeting panic when the table moved back.) And she said I'm stable! Which in medical terminology means no change from last time. Which means I didn't get worse!! YEAH

But it also means I didn't get better...BOOO! There are two nerves actively inflammed my trigeminal nerve and an abduces nerve that I didn't catch the full name of (and since the receptionist lady wasn't going out of her way to help - BIG SURPRISE - I elected to have the MRI mailed to me.) but is next to the trigeminal nerve. And she seemed fairly surprised to learn I elected to start the Methotrexate since that "takes pregnancy off the table" (for now).

In that moment I wished we were friends. I wished she would tell me honestly what she was thinking. I wished I could say, Hey! Lets go grab a margarita and you tell me what you would tell your sister to do in my shoes." And to some that might be a strange thought but I took the time to do what a lot of people don't. Find doctors that I actually like. They are down to earth. Friendly. They don't rush me through their office. And I absolutely trust them - because after all it is my life we are dealing with.

She checked in on my pain and asked about the steroids. Checked my reflexes told me my boots were super cute and sent me on my way with a script for another MRI in 6 months.

Happy Birthday to ME!!

So today is my 29th Birthday. Holidays and Birthdays are now somewhat of a mile marker for me on this journey. I remember very clearly my 20th birthday as the next day I woke up to towers falling on TV. I had no idea how much change could go on in my life in 9 years. I didn't know that Septemeber 10th would be the last day BEFORE a day so horrific we just call call it by numbers. Or that my brother would end up going to war. Or that I would marry the man I was dating at the time.

I spent my 21st Birthday having a beer with my Grandpa and a shot with my Grandma. My 22nd Birthday my bestfriend put my house key in the ignition of my new car and 23 was just after I finished dealing with my first go round with Pulmonary Sarcoid. My 24th Birthday was shortly after I got back from Climbing a Mountain. My 25th Birthday was a surprise bridal shower thrown by my future in-laws so that day was spent with family. I have no recollection of my 26th birthday (and sadly not because we had a big party) - I just don't remember. My 27th Birthday we had dinner at Claim jumpers and I couldn't have my Giant Eclair because I had surgery the next day.

That leaves last year and 28 and I can say I really felt it sucked. Mainly because I felt everything sucked. So I'm really happy to report that today I had PERFECT weather - blue sky chilly but not cold and lots of really amazing wishes from friends and family. I feel very special today. So thank you to everyone who had a hand in that.

So here is my Birthday Wish and since no candle is involved I can share it with you - that I feel as blessed everyday. And that I continue to be prepared and capable of handling everything that comes my way this last year of my 20s.

KISS Committee

It's amazing how when God shuts one door He opens a window. As I mentioned in my previous post I used to be the Youth Ministry coordinator of my childhood Parish. I ended up leaving this job by choice but probably just before my position was "eliminated". A writing on the wall kind of thing. The problem is I LOVED this work. I loved working with the teenagers in my charge. They kept me young, made me laugh. Lifted my spirit when I was down. They renewed my faith in the coming generation and they reminded me that with Youth nothing seems impossible. I also was not asked to come back and teach confirmation which I expected and am fine with but still pissed me off. (That people can come in and uproot my entire Parish is something it took a long time to get over.) Soooo I have a little bit of extra time.



And of course today I received a phone call to give up some of that time - to The Foundation For Sarcoidosis Research . I was asked to be on their planning committe for their annual K.I.S.S. (Kick in to Stop Sarcoidosis) Event thats held in February. I was super honered and very excited - until I was told I'd be responsible for selling 10 tickets @ $150. But with the support of my husband and some amazing friends I think I can proably sell the tickets. We volunteer at this event almost every year and people always ask me how we came to volunteer and most are shocked to find out I have Sarcoidosis.

So thank you God for giving me an opportunity to help myself and give back to this foundation that raises research money for this disease. When I was first diagnosed there was only one website that I found helpful - and when I was able to meet the founder and President just a short while later I was so grateful. Come to think of it that was a chance meeting too.

I Answered "Good"

I had a wonderful Labor Day weekend. We had beautiful weather. My idea of PERFECT infact. I had a slight set back on Sunday as I a) skipped the sunblock on my body prior to the baseball game b)forgot that the Methotrexate makes me even MORE sensative to the sun. I'm pretty pasty to begin with so my skin tone is currently "lobster".

I was able to spend Monday with my Mom which was really nice. (We work together so I see her everyday but Monday was all about hanging out and not work.) We hit the big craft fair which turned out to be a pretty emotional morning for me!?!?!

The first thing that had us crying was the generosity of a complete stranger. We had wondered over to this booth that had the "This Hat Looks Good On Everyone" Hat. Priced $40 they were really soft and several different styles and colors and versitile. The lady came over to help us and we had said - My Grandma is going through chemo. She's going to loose her hair. So after a few minutes we settled on one. When Mom went to pay she handed her the bag and said, "this is for Grandma...No charge." Instantly we started to cry. I couldn't believe this woman just handed over her handiwork to a complete stranger. She had no idea what an impact that gesture could have to a family so blindsided by illness.

A little later I heard my high school band marching down the parade route playing the song we played in Disney World at Epcot. "Late in the Evening" by Paul Simon. I got goose bumps. Then my Mother started crying. She has a great memory of us coming around the corner at Epcot playing this song and its so important that we played it at our reception to announce the wedding party. Seriously we have to be the only two people in history to cry at a craft fair.

As we were leaving a group of the Miss Septemberfest contestants walked by and one of them was a previous Youth Minister of mine. I started this blog after I had parted ways with my job as Youth Ministry Coordinator of my childhood Parish but these teens were a huge part of my life and I miss them a great deal. She looked lovely in her red gown and as I called out to her she came running back towards me. She gave me a big hug and said "I miss you". It warmed my heart. She then asked me how I was doing healthwise and I said "good.. everythings pretty good".

The answer suprised me. If you had been living inside my head you would understand how incredibly far I've come. No longer do I have the urge to educate EVERYONE on neurosarcoid or make them understand why I was feeling like a basketcase. I've accepted the fact that I have an illness but I've been able to stop thinking of my life in terms of before and after I became sick. And i've veen stopped labeling myself as sick. I was capable of a normal answer. And I didn't feel like I was lying. Its true I am good. I've got a way to control my pain. Doctors working on a solution and a sense of control about everything that a year ago I wasn't capable of. And the insight to recognize this truely makes me feel like I've won something. But even more I knew and believed that this young, beautiful spirit in front of me really meant that she missed me. The confidence I had lost has been restored and I was able to feel the concern in her voice. I promised her coffee and she said she'd like that. :) And then I felt old ....