***** 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.
Thursday, January 28, 2010
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10 comments:
My beloved Sweatshirt,
Lying for all stops now. I cry for you, for Jason, for Kate, for Tom, Mom & Dad, Matty and I cry for me. Not all the tears are out of sadness and frustration, I am very happy to say most are out of joy. Joy for EVRY SINGLE memory you & I have ever made with each other. Chairlifts (Can YOU cross YOUR legs on a chairlift?), "Ozzy is at my house.", Halloween (how many times can u legally change costumes and hit the same houses? Mom's mac & cheese), Wildwood (Matthew Brooks Redfield Jr. & Apeman, STUPID FIGHTS ending in long lonely walks, Hooters concert), Darlington Park (IS that what I think it is in the h2o? EEEEWWWWWWW), Yellow dresses....my list with you could go on forever. I know that there is never going to be an end to it because I will ALWAYS have you. YOU are without any question or doubts the most inspiring person I have ever met in my life and will most likely ever meet.
There is absolutely a reason that we were put in the Mr. Walters class all those years ago. For all our similarities, we have just as many opposites. With each and every day, I count the blessings in each. YOU are the top blessing. I can never imagine my life without you and I pray I never will have to learn to.
I will forever love you as more than a mere friend, more than even a sister, even more than a Sweatshirt....I love you as a part of me.
(yes, the tears are flowing. This time, no lies.... they're joyful.)
We all lie. Fact of life. It helps to lie at times. It helps at times to tell the truth. If our lies are not there to hurt people, then our lies might be a way of reassuring ourselves. Our lies might be a way of protecting ourselves or others. I know you are not a malicious person. Go on lying to me of you need to. Ignore me when you need to. But also know we are here when you need to let loose the truth. Your friends stick by you no matter what.
Thank you for being real. It's nice to drop the guard sometimes and just let it out and tell it like it is, and people need to hear that. You're human and allowing yourself to be human is human! No, I can't imagine what you go through, all I can say is I just think you're amazing and a bright star to everyone you come in contact with. :) Love you!!!
Thanks for writing about MG. I was misdiagnosed with MG in Dec. 08' when I was 7 months pregnant. I had 8 IVIG treatments and finally went to the Mayo Clinic and got a correct diagnosis of CMS. Its good to read and hear from someone who feels a lot like how I feel many times. Thanks for sharing.
Claire..we're all human. Sometimes we have to hide the truth to make it through the day. I could never imagine the struggles that you face every day with your health. It seems to me that you hit them head on and do a beautiful job doing so. You are an inspiration. Spending time with you, your children, and family this summer was truly a remarkable time.
I think of you so often. Be strong but don't forget that it is ok to do what we need to in order to make it through a tough time.
Kimmy : )
i absolutely love all your writing kind, very interesting.
don't quit and keep writing for the reason that it just nicely to look through it.
impatient to looked over even more of your current content pieces, stunning day :)
OH My dear Claire, I love you so very much. I wish I could be with you oh so often. I remember sitting with you through several of your treatments. We always made the best of the oh so rough situation. You are an inspiration to me and to all you are around. I hope things are getting a little easier to handle up your way. Wish I could be there to hold your hand. I miss your blog. Keep your head up as I know you do. I love you with all my heart. Say hi to Jason for me.
Love you always,
Wendy
I came across your blog when I was searching for information on Myasthenia Gravis. I to have MG and I was diagnosed in 1998 when I was just 18 years of age. It is a very frustrating condition to have been diagnosed with and has held me back from various things I enjoy since. I was wondering did you have your children after you were diagnosed or before and if it was after what meds were you taking during your pregnancy and were there any complications? My husband and I would love to have kids but with this condition I was advised against it at first and we waited but since my MG will never be cured I can not wait forever and the doctors and I are just leaving fate handle this one. At the end of your blog you had mentioned that your doctor was going to be trying you on I new medication and I never heard of it before but I had a lot of down times with my MG and my doctor has tryed just about everything out there like: IVIG, Plasma, Cell cept, Imuran, Mestinion, Neroal, Steriods, and the most recent I am taking Tacrolimus which seems to help improve things. You should ask your doctor about it cause since I have been on it I have noticed a difference. God bless you and I hope you find a med that helps with your MG cause I know all to well the discomfort and frustration surrounding MG.
I completely understand how you feel. I hope your MG is better soon. Follow me on Twitter if you have a Twitter account. My ID is @myasthenic.
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