I told my mom in the waiting room this morning that I looked forward to having my period. I know that sounds bizarre, but since I stopped nursing on 9/13, I've been waiting for it to return. It's a sign that my body is returning back to pre-pregnancy state, and I would think that would be a good sign.
I called my primary care doctor after the echo this morning, to check on lab results. The labs are not back yet from the samples - of course, it could be next week as "these things take time". Either way, I'm finishing up Flagyl over the weekend, and we'll see what happens. The echo and labs are all being sent to NWMH as well for analysis. I'm curious how I'll react when the Flagyl stops and when the prednisone drops a few days later. No sense in worrying about it. I tried to rest in between dr. appointments today, but my mind is so full and I'm shaking like a leaf. Wondering how much that's the steroids or just plain anxiety with all that's going on.
I had a funny feeling this week that I just wanted to make it to St. Peregrine mass this weekend. I know it's a lot to push my body to do (I can barely make it through a shower), but I actually miss going to church. There is something very comforting about faith and God and community at these times. I think like work, I'm trying to hang on to some consistency.
I just got a call from Northwestern again, and Dr. G wants me to meet with Beth ASAP to go over the nutrition changes and the reactions. She also wants me to meet Dr. Taft, who is the clinical psychologist on chronic eosinophilic GI disorders, as she's concerned about me working and balancing all the symptoms and major changes (oh yeah, and two small kids and finances, etc). Especially with my current condition and what could potentially happen as I get into remission and relapse again, they want to give me the right treatment. I was grateful to Beth yesterday for helping coordinate things with me. It's disappointing to be such a rare case with so few answers of what is to come, but I'm glad everyone seems to know me and be working together at Northwestern to help and I'm grateful to get some confirmation that this is not abnormal and my treatment will not be "easy". It's amazing all of this treatment is covered under the EoG program - the dieticians, psychologists, formula, specialists, etc. Everything is filed under this eosinophilic disorder, so it gets special insurance treatment. Sweet! So far, the bills have been reflective of that, which I'm grateful for. We already maxed out our out-of-pocket fees for me with Lucy and all the complications during the pregnancy, so hopefully we won't get hit with anything major as we work through this. I guess even if we do, we have to do whatever it takes to get my body back on track. I still think back to 6 weeks ago - this stuff seems surreal to even have dreamed up back then.
Adam is planning to come with tomorrow, which I'm grateful for. I know it's a lot of time off work, but I really need him right now. It's good for us both to prepare on how to deal with these daily issues, my "paranoia", and the long road to recovery ahead (and the potential that we may never know the answer, that this may be autoimmune vs. allergy, that we may see relapses often or never again, etc). The kids will again stay with my parents to help with consistency, and little Reeses is going to spend the day with his puppy friends at Kathleen's until we get back tomorrow afternoon/evening. Friday's out of the city are always fun. I feel bad not driving, but I'm smart enough to not try with the way I feel. I think even as a light-weight, I do better with a glass of wine than all the stuff in my system right now.
Kathleen even picked up my dr ycleaning yesterday; I'm so grateful for all the people helping us out. I got a nice call from Pat Jarot today, and called her back and got to talk to her husband Ed for an hour. It's a joy to be surrounded with positive people that help me stayed focused on all the good things. What a blessing for so many special people in our lives!
I saw a quote from Steve Jobs today, that really struck home with me. While I'm not fighting cancer, I am fighting a chronic illness that raises so many questions on what the heck your body is doing and how much we can't control in our lives. I think this is truly inspirational, and a good way to focus each day.
"If you live each day as if it was your last, someday you'll most certainly be right. It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself: 'If today were the last day of my life, would I want to do what I am about to do today?' And whenever the answer has been no for too many days in a row, I know I need to change something.
Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because death is very likely the single best invention of life. It is life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true. Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma -- which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary."
Well said Steve, well said.
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