Still Hanging in there

It has now been 3 weeks since my last plasma exchange, and I am still feeling strong, despite having had a terrible cold and dealing with poor Thomas. Our little man had 3 molars break through and battled a 104 temp and an ear infection. All this following the little guy giving up his beloved binkie the weekend before. It was a trying week, to say the least. I went a full 8 days without a full night's sleep- and yet, I am still asymptomatic. This is excellent news!!! It really looks as though the cyclosporin is going to do the trick. The only side effect that is troublesome thus far is the tingling in my hands and feet. It is a little like having frostbite. I can absolutely live with that.

I am still coming down off of the steroids- never fast enough for me, but coming off them all the same. I am very tired of hating my face. After having been sooo thin, I can deal with the body changes, but it really drives me nuts to look in the mirror and not look like myself. Whatever. I won't dwell on that. Even I am tired of hearing me talk about it. I am posting a picture of last weekend- Note the skinny legs and big ol' head. LOL. Someday I will be back to my normal proportions.

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!

Hyperactive Super Steroid Lady

I am super woman. I can do anything. Or I think I can. I have gotten all my strength back- and I remember how great it feels to not have MG. This is sometimes where I run into trouble. I have had all these treatments and I can feel the medicines pumping through my veins. After having been through so much you would think that I would be able to behave in moderate ways to help keep myself healthy. I try, but it is hard not to push too hard, play too hard or stay up too late! The prednisone has me feeling like a jittery maniac with superhuman strength. I am only tired the first thing in the morning, and once I get moving, I feel like I am even stronger than any normal person. It is a very tricky spot to be in. I want to feel good and stay feeling good, but I have hated feeling sick and tired for so long, and I don't ever want to stop moving and doing things. It is as if Jason, the kids and I are celebrating my current state of health while mourning for the way we wish our lives were (not that the kids know any different) and waiting for things to fall apart again.

I have been forcing myself to lay down with the kiddos everyday. I am just about never able to even rest during that time, though. I am making lists and literally twitching to get out of bed and start organizing closets or mopping floors. It is hard for me to even sit here and type this out. The steroids have made me feel like this in the past... but this time is probably the worst. I can't stand to be in my own body- it is like I have had about 300 cups of coffee. If it weren't for the sleep meds and other stabilizers I am taking to combat the steroids, I am pretty sure I could stay awake and clean the entire neighborhood. My label maker is currently my best friend. And don't even think about getting on the phone with me. I can barely keep a train of thought for more than a minute, and I am talking and rambling on at 500 miles per hour. I then immediately forget everything that I have talked about, or even who I am speaking to. I wonder if this is what it feels like to have ADD? I am hyperactive, for sure.

I am congratulating myself for at least recognizing the situation and trying to behave moderately. It is a lot like dieting- the more I try to slow down, the faster I want to go. You know when you want chips or chocolate so badly that it is all you can think about? If you just had one bite, you could probably stop thinking about it. I now have a taste of health, and I want to savor it. I don't want to slide back into being sick and feeling weak- there is a frantic feeling that this won't last and I need to get everything done and enjoy every second "just in case".

I am looking so forward to being off the steroids all together. After the pheresis has worn off (about 3 weeks or so from my last exchange) and after I am off of the prednisone, it is just a waiting game to see if the cyclosporin is working. I think I mentioned that the medicine in my blood has reached the therapeutic level. What does that mean? If the symptoms return, once all the other stuff is out of my system and the pheresis has worn off, then the drug isn't working. But that isn't going to happen, is it?!
Thank you all once again for all your thoughts and prayers.

All is well.

Hi folks.
I have been feeling pretty good... in fact, I have had some super steroid strength in the past few days. I just haven't had a lot of time to type out what has been going on. I only wanted to post something so you all wouldn't start to worry that I hadn't written in a while. I will be doing some more work on the site this weekend.
Take care! Claire