And so we lie.

***** Tonight I wrote from the heart. It might be difficult to hear, but it is the truth. We are great, because we have each other. This is the real deal, this is why I haven't kept up with the blog. We thank each and everyone of you for reading, for praying and for thinking of us. We are so blessed.*****

It is impossible for anyone to really, truly know what is going on in someone Else's home. In their lives. Who are you inside? Don't you even question that yourself at times? Don't we all? I would like to think that one of the reasons that we question ourselves is that we would all like to be better people. We would all like to be those that are the best in us. We would all hope to be all that God intended for us to be. Striving to be better, striving to be stronger, striving to be all that God intended for us to be, that is why we are here. This is my belief.

When people ask me, when people ask Jason, how are you, how is Claire? We inevitably respond, I am fine, she is fine, we are fine. I know I have touched on this before. I have gone around and around in my mind about how to continue this blog. Do I tell the truth? I NEVER want to sound like a complainer. Guess what- as hard as myasthenia is to live with, there are millions of people out there who have to live with things a million times more intense. Having a sick child. Losing a child. Getting a life-threatening diagnosis. Managing an ill parent. Losing your job. Going through a horrible divorce. Losing your life savings. Losing your home. Having no family to support you during hard times.

So how do I, how do we, tell the truth when people ask without sounding "oh poor us, oh poor Claire, oh our poor children"? We function. We get through. You know why? We lie. We lie to all of you. We lie to ourselves. We lie to our children. Maybe in reality it isn't lying. I would love to believe it is insanely positive thinking. That Jason knows one day I will be well because I believe that one day I will be well. Coming up on 15 years since my diagnosis, and since I have been tied to hospitals or medications in some way, I am thinking, really?, am I ever going to be well? There is no alternative... I am planning on being well. I am planning on one day saying to my parents, "yup, we will see you out in Colorado for 10 days, and get the kids signed up for ski school because Jason and I will be skiing our ASSES off on the hill with you guys!!!"

My most recent drug regimen is not all that intense. It would be great if it were predictable and I could just take the drugs and be fine. I know all the list of meds I take can get daunting and isn't all that interesting to most of you, so I will give a brief synopsis: I am back on a drug (CellCept) that I took a few years ago with limited success. We thought it might be more effective after the 2 years of chemo. I am also going to the hospital once every two weeks (which is really turning into being once a week or a bit earlier) for steroid infusions. Last week I went in for a big steroid (solumedrol) boost on Friday. It barely held me for 3 days and I held on a bit longer (because I am stubborn as heck) to go in today for another big steroid boost. My fantastic nurses, my neurologist and I decided to go back to the IVIg tomorrow to try to get ahead of the symptoms. God bless the people who take care of me, because I am really a huge part of the decisions we make about how to treat this insane disease.

After tomorrow, Jason and I are going to meet with my local neurologist to again make future plans concerning my treatment. I am leaning towards Retuxan... if anyone knows anything about it, please fill me in. It is a drug used to treat lymphoma and Rhumatoid Arthritis. It has been used for MG, but there is limited information about it, because very few myasthenics are in the situation I have been in for the last few years.

Some of you have heard this- Lies stop here- My life is awesome in so many ways. I am so blessed. I have a wonderful husband, two fantastic kids, the most loving family and friends and insanely great neighbors! The only thing that sucks is living with myasthenia. I wish it weren't here. I wish we could control it. At times it is who I am- but I am the one who chooses define myself. My definition of myself is not a myasthenic, rather a person who battles and wins over myasthenia.