Well, I'm happy to report that the new medication regime seems to be working. I've had no major anaphalaxis attacks or episodes and have not had to use my epipen since the last dreaded incident in May. And so for now I've been given the clear to avoid more aggressive treatments like chemotherapy. As long as I don't have any more major episodes I'm cleared from doctor visits and tests until my next bone marrow biopsy which will probably be in October.
I still have rough days - usually two or three a week. The hardest thing for me is to take it easy on those days. I have to deprogram my nutso mind to just lay low. I'll admit I still don't do that and I usually end up paying for it. Sitting still just isn't in my nature but learn I must. I think for awhile I was so relieved that I'm not in the later stages of the disease or staring down Leukemia and facing imminent death that I just wanted to shake off all that happened in April and May and go back to being Dianna before the diagnosis.
But now I'm settling in that this is something I'm going to have to fight for the rest of my life. Jason's Mom who has Lupus shared something with me that she tells herself on her rough days when you just don't feel like getting up; "Suck it up and put on your big girl panties!" I just love that! It's both humorous and encouraging. I'm fighting to keep a hold of the lessons that God has taught us through all of this. I pray that we keep relying on him and not on ourselves. It's such an easy thing to slip back into as daily life numbs.
My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.
Goodness, I love that hymn!!!
Vin's asthma has been flaring up again. He's had a tough week. Currently, he's getting four breathing treatments a day. Two of which are a half hour long each. It's a lot to ask a little guy to sit still for that long; while he doesn't like it he has been handling it very well. It is hard to watch him struggling to breath and to see him struggling. Jason was up a good portion of the night Sunday giving Vin treatments as he slept. The good news is that we were able to avoid having to go to the ER and he FINALLY seems to be coming out of it. Our tough and sweet boy!
Louie is doing great and is such a delight. This week he started waving hello and even signed "more" back at me. Of course, he has no idea what the sign means but he is quite a good mimicker.
I'm so excited that we are moving in two weeks!!! Jason will be working out of AIG's (no snickering) lower Manhattan office and we found a cute place in Matawan, NJ. It is about an hour drive from family in S. Jersey and about hour and half commute for Ja via train. The great news is that the house is within walking distance to the train so he doesn't have to contend with the crazy train station parking issues.
That's all for now. Hope everyone is well.
Dianna
Wednesday, June 17, 2009
Tuesday, June 16, 2009
Wednesday, June 10, 2009
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