A thank you.

THANKS
I would like to start by saying how very grateful Jason and the kids and I are for the outpouring of support from everyone. When people hear about what has been going on with us, they are always very generous with offers to help. We have gotten much better (I really struggled with accepting outside help) at accepting your offers, and we want everyone to know how much we appreciate it. We have both always been "go-getters" so it is hard for us to not be able to do some of the simple things everyone takes for granted by ourselves. I am hesitant to list all the wonderful people who have been so kind, both with your time and your thoughts, in case people don't want their names shot out over the internet, and also because my memory is horrible due to lack of sleep and drugs, so I am terrified that I might forget someone! You all know who you are, and we love you for all you have done. Friends, family, neighbors, cousins and all the staff at Kate's school- not to mention all the health professionals who have taken such good care of me- Thank you.

It is thrilling for me to hear such positive feedback from this site. I am shocked at how many people are coming up to me, emailing or calling and saying that they like what I am doing, and that many people didn't know what was going on until now. It isn't that we kept this a secret or anything, it just isn't something that we often talk about unless we need to. Having this blog has made my life and the lives of the kids so much better- I am so happy that people can see that even though we live with this monster in our lives, we are still functioning and I hope that it is coming across that we are still laughing A LOT. The kids have benefited the most, in my mind, because they aren't forced to hear me talking about meds and dosages and blood pressure, etc, etc, etc. I am able to just be Mommy- and I love that.

I haven't written much lately, mostly due to the fact that I have been feeling good. We live in this crazy cycle of me being very ill and then we have a period like this when we can kind of forget that the disease is still floating around in my body waiting for me to get a cold or have a hormonal shift or get a cut so it can start producing anti-bodies like mad. Oh, that sounds so glum. Forgive me, the other reason I haven't written much is because the decrease in steroids has made me kind of angry and feeling pessimistic- which goes against every grain of my being. It will be worth it in the end, but all these drugs do kind of get to you. Kind of is the understatement of the century here. Honestly, sometimes the decrease in steroids is worse than being on them full strength. And I expect to feel better yesterday- not have to take my time and slowly wean and eventually feel better. One of my dear friends told me back in college- "you are the kind of person who does everything 1000% or not at all"- ahhh. Lenny, you know me all too well. And I seem to have married the same kind of person- does that mean that together we do things 2000%? (How can you even have more than 100%)? Heaven help us. LOL But we do work extremely well together- certainly in these tough times, but as I said, our home is one that is filled with laughter, and I think that is one of the greatest blessings of all.


CURRENT HEALTH
Now that I have gone on about feelings and such, I suppose I can give you all an update on my health. For now, I am still feeling pretty strong. As I said, I am having a tough time with the steroid withdrawl, and the Guru did tell me that if I decreased too rapidly that we could see a flare of symptoms. He explained that by decreasing too fast, we are asking the cyclosporin to work twice as hard at the same time we are asking the prednisone to stop working all together. And my body just cant adjust that quickly. Unfortunatly, the steroids sometimes cause me to make some not so well thought out decisions that I think are wonderful- like tapering 5mg every 3 days, rather than the 5mg every two weeks that I orginally agreed to. The prednisone can really make a person crazy. I go from feeling like superwoman one second to feeling like I can't even move to go to the bathroom the next. All the while being scared to death that nothing is going to work and we are going to be on this horrible roller coaster for the rest of our lives. See- the steroids have me saying not so positive things!!! Not that they aren't true, mind you, just that we ususally just deal with them and don't talk about them like that. So to try to ease this physical and mental strain, I am going to slow down the taper- even if that means I won't have a jawline for my friend's wedding next weekend. (ah ha- she admits the ulterior motive on the fast taper!)


UPBEAT PLANS
We have a wonderful weekend planned, with our standard neighbor bar-b-que for dinner tonight and some old wonderful friends coming in for the weekend. Then we have mommy's day on sunday- Katherine has something special for me that she made at school- I can't wait to see what it is. And I have been keeping us busy- everyday has been another adventure. The hit of the week was that we bought a huge plastic kiddie pool. It is wonderful to see the kids and their friends and neighbors splashing around. The other night we let them have a tub in there after all the playdates were finished. I thought Chris next door was going to die laughing when he heard me say across the yard, "oh no Thomas- we don't poop in the pool!" And little Thomas was so proud of himself. Ha. Needless to say, outdoor tub came to an abrupt end. Thankfully we empty the water out every night.

Happy Mother's Day to all you Mommies out there!