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People are often unreasonable, illogical and self centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world the best you’ve got anyway.
You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.
-Mother Theresa

Sometimes I can find no words for what’s going on in the world around me. For what’s happening to those I love. For the pain and hurt I see. My solution? I steal words.

Mother Theresa is one of my favorite sources. She finds the words that my heart wants to say but is too distraught, too lost to find.

When I am hurt or see a loved one in pain, my first instinct is to pull it all back, to retreat. I often describe myself as being as vulnerable as a sea cucumber. I’m sensitive and out in the open. My only defense is looking pathetic and harmless enough that no one would want to harm me. (I mean, seriously, have you ever seen a sea cucumber?) But that’s not the answer.

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In the last month and a half, I have spent 40 days and 40 nights in the confines of Mass General. While I’m not yet home from this ordeal, I can confidently say that a plan is in way if they decide not to discharge me today. (The paperwork has already been started, but you never quite know…) I will be honest with all of you and say that my spirit (which I once though to be unbreakable) was starting to crack. But my dear sister Stefani would not let that happen. She and Beast devised a plan to break me out of this brig if my medical team was still holding me hostage.

Note: The captions are Stefani’s original captions.

My sidekick - waiting to rescue his princess (True)

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On Wednesday, after 25 days in patient at MGH, I broke out! But I did not leave empty-handed. They sent me home with a nifty new pump and GJ tube to help me get nutrition, 5-6 new medications, and gram-positive staph (as well as another bug I can’t recall) UTI.

The different fluids, formulas, and supplements that were able to get me home: Peptamen 1.5, TPN, Potassium, Magnesium, and Saline

I was so happy to get out of there that I didn’t even care they were sending me home with a REALLY nasty UTI. And – as luck would have it – we got a call from Dr. Sims’ office literally one hour after we left. My biopsy was back. Brilliant. Unfortunately, they wouldn’t tell us anything over the phone, but they were able to squeeze me in for an appointment in two weeks. (Usually it takes months to get in with her, so we’re pretty happy we don’t have to wait too long.)

Now that I’m home, I want to reiterate how much we appreciated everyone who called, sent cards, and visited. I don’t think I could have kept my spirits so high without you all. Especially our amazing visitors: Stef, Karen, Sarah G., Liz, Nana, Beepa, Ralph, Will, Sasha, Katie, Elena, Corynne, Missi, Erin, Crystal, Tapas, Sophie, Jonah, Rebecca, John, Sarah F., Aly, Rachael, Tali, and Kevin. Sorry if we missed anyone! And a huge thanks to everyone who sent cards. They helped keep the room festive during the holidays.

My Card Corner - Thanks for all the love! 🙂

Now I’m just readjusting to my freedom. I’m experiencing a bit of culture shock, coupled with how much more complicated my life has become with new medical devices and medications. But we’re hoping that with the better nutrition, we can better keep the mito from progressing. While I was inpatient, Dr. Sims added a few new supplements to my mito cocktail and we’re hoping that those will decrease the episodes of dystonia, seizures, cyclic vomiting, etc. and increase my quality of life. It has certainly been a tough year for us (and for so many of our dear friends), but we’ll keep fighting and looking to a better future. Thank you, once again, to everyone who has stood by us on this crazy journey. It wouldn’t be possible without you!

The beautiful view from our hospital room - Floor 22 of MGH

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