First of all, I just have to give thanks to G-d for this gorgeous day! What is about the sun that just lightens your mood and gives hope for a new day? It's the kind of day I wish we could load everyone into the car and go out to restaurant and sit out on the patio. After some difficult days, we finally put the call into our internist for a J tube. They put in the call to interventional radiology and I guess they will take it from there. Some people respond wonderfully to this, while others, not so much. I am at a cross roads with all of this. When my days are good, I feel normal. Yesterday and today I have been so hungry that I could just bite my hand, or the nearest one I can find. I want food and I want it bad. I can't help but wonder, is it my body's way of taking a risk and saying, I could eat it?? At the same time, for those of us with GI issues know, just because you crave it, doesn't mean it won't come back to get you. With all this beautiful weather going on, my mind says it's time to go out. Yesterday, we had an appt. Aria has grown out of all her clothes and it's always been my joy to be able to find their next season's clothing wear. So, I took a leap and asked Seth to stop at the store and see what we could pick out for her. We walked into the store and I was elated. It just felt so normal and exciting. Kids are only young once, which means I get to only enjoy a few years of being able to pick out their clothes for them before I get to hear how uncool I really am I walked in with gusto. As I started to look through the racks my body started to shake. I found myself having to lean on everything. Being at home I can sit down whenever, and apparently I do it more often than I realize. There was a woman who kept on staring at me. I can't say I blame her, but it just made me want to say "I'm not a drug addict, I'm sick," or just turn tale and run. After only a short time I knew it was time to leave. The positive side of me says, hey! You got out! The other side says, maybe you didn't try hard enough. I still go back and forth with the tube. I am concerned that maybe I am missing something else I can do, that wouldn't be so drastic. At the same time, I have heard several stories of people who have gotten them, and now their life is so much better. We do have our appt. with U of M coming this Thursday. I am guessing he won't like the fact that I am over riding the decision of the Dob Hoff. I am also wondering if he may just drop me all together for deciding to do this without his consent. 85% of me is sure the J tube is the way to go. I opened just one bill from one of my hospital stays and let's just say, we could have bought a new car. This is coming from a family that drives a 1995 minivan. I want the right diagnosis, but so far, except for my stomach emptying study, all the other tests have come back normal. Don't get me wrong, I am so grateful. But it seems this doctor has plenty more tests he wants to order. These are tough economic times for everyone, so it's not like there is funding for us in this scenario. It's hard to put a price on my life. I try not to say much about politics because it easily ruffles feathers, but in the case of healthcare, they need to do something. Having to drive my family into debt to save my life, it seems like there would be no question. I know my kids would rather have me than stuff, but after losing Eli and Rory, I have always dreamed of my kids going to gymnastics, ballet, or karate. Now, they'll have to miss out. Then again (this is me thinking out loud) maybe the J tube will give me back the energy I need to be able to go out and work and then all that stuff will come?? I am thankful that G-d has blessed us with a great family. As hard as this has been on everyone, they have been able to support us with love and even a place of refuge. We are surrounded by love and cheerleaders and it's just what we need. We are waiting for radiology to call us back and with the appt. for a consultation. I have stayed of the internet and not looked up any of this. Frankly, I don't want to know all the negatives about it. At the same time, we don't know much about it. Hopefully this appt. will give us answers on what to expect with all of this. We still have our appt. with U of M next week, only the good Lord knows what will really happen. I am trying to relinquish my false sense of control and just try to ride things out as they come. I am trying hard to live in the moment of today, actually even, the hour, and no more than that. It was a year ago, I was in the middle of a food cleanse, desperate to lose even 5 pounds, I never in a million years would guess where I'd be. Not only that, but tomorrow it will have been 1 year since our amazing Grandma passed on. Through out all of this, I think about her so much. My sweet Grandma was a night owl, like I am. Part of me is so glad that she isn't here to see me like this, it would have broke her heart. The other part, especially late at night, I imagine her sitting with me. She always loved to grab your face and stroke it and just smile for what seemed like minutes. We miss her, she just left behind such a legacy of sweetness, compassion, and a listening ear. So many important life changing dates are coming up, so many people have come and gone, it's all so fleeting. I so miss the yummy fresh vegetables, tender juicy meats, barbeques, the gathering of friends, laughter, squeals from children enjoying each second, living in the moment. I miss not thinking! To just get in the car and go for a drive and picking up burgers on the way out and just seeing where the day takes you. To pass the time, I watch old sitcoms. I have trouble reading and watching anything serious, and it soothes me. Lately, I have been watching the Wonder Years. It's funny how in the 9 months I feel as though I have a narrator whispering in my ear, dissecting each moment of my life. I often wonder how the kids will look back on their childhood. I have so longed for them to have such a carefree existence, to think of their youth in fondness. My health has had to be put first in front of everything, I feel selfish. Part of me wants to wait on the tube just in case that healing comes because I WANT to eat real food. Yet, I can't help shake that they need me to be healthy and present, even if that costs me what I want. This must all sound like such a bunch of blabber, yet I feel it needs to be shared. I know that G-d works all things out for His glory and I can only hope that maybe my thoughts will help someone else know, I too get depressed, anxious, angry, question, love, rejoice, seek, ache, yearn, just like you. I think the devil likes to tell us that we are weird, that we are the only ones who feel like this, and it brings such a feeling of despair. The more I talk with people, the more I am finding out, we are all insecure. We all make mistakes, second guess, judge, and yet long for a deep sense of belonging. I never realized how important is was to me to feel as though I mattered, that I made a difference in my life. Maybe it's a longing that G-d gives us, deep down we all want to contribute that we may bring light to others lives. I know I do. As always I am asking for prayers. I still believe He could heal me 10 minutes before having the tube placement. Or He could choose to heal me by having a tube. I don't know, either way, I pray that He makes His voice known on what is the best thing to do and for great peace about it. I have had a lot of people ask us what we need and I have been to embarrassed to reply. We do need help and I will try to organize these thoughts so that we can hopefully make this transition period easier on my family. I can't thank you enough dear one who is reading this. Thank you for caring about me and my family. Thank you for your prayers and support. I have learned in a huge dose how important community is to me. People used to really irritate me. They never did what I wanted, how I wanted it done. Now I can't get enough. Each interaction is so precious and truly leaves an impact. I keep on praying for that day when I can go out with loved ones and sit in the sun while eating some delicious food and chatting about the crazy things going on in our life. Until then, I must focus on the beauty that is here and now. G-d is teaching me not to take one moment for granted (don't worry, on my bad days, I whine) especially when I don't understand how this could all be happening. I still believe He can change all this around, but I guess I just have to wait and be patient. We have been blessed with a really mild winter, and now today almost feels like summer, it's amazing. The grass looks so vibrantly green, the buds on the trees look like about to burst open, the flowers are trying to bloom, the stars just seems so much more clear, it's all so beautiful. I have had a song that has been going through my mind these past few weeks. Steven Curtis Chapman wrote it after his daughter died and his words have echoed many that I have felt. Here is the song if you'd like to hear it. It's called Spring is Coming. I feel this season is so huge to me as I have blogged before. I pray this spring brings new life to me and my family and this song just has such beauty. May the name of our one true living G-d be praised.
http://www.youtube.com/watch?v=Bco4kmBHEKQd
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