Maybe one of my most honest ever

This is how it is.  The roller coaster of myasthenia... all I can do is love the good (and great!) moments and deal with all the rest. 

My post tonight on the Remembered Voices blog really tells about some of the ups and downs on the myasthenia train. 

Thank you for all of your thoughts, prayers and for following my story.  My family and friends love me, and God certainly does too.  I don't know where I would be without all the support!  I'll keep smiling and thinking good thoughts-  you do too! 

Merry Christmas!!!!

Celebration and Concern

                                                              November 11, 1995

 

I was browsing in a local store the other day when I came across a wooden sign that said, "All this because two people fell in love...."

Jason and I celebrated our 15th wedding anniversary last Thursday!!!  We had a wonderful night out in Portsmouth, thanks to my parents, who came down to stay over with the kiddos.  (They also had a wonderful night... at Chuck E Cheese!!!)  It has been a great 15 years, and it only gets better.  I am blessed to be married to such a kind, funny, sweet man.  I can't remember a day that has gone by that we haven't been able to make each other laugh.  Thanks for being my best friend, Big. 

Today I am sitting here waiting to have fasted long enough to go have my blood drawn.  We are checking for all the regular stuff... cholesterol, Vit D, etc.  Unfortunately, I also have to have a full liver panel, which has me scared.  As many of you might remember, about a year and a half ago, there were concerns about my liver failing-  I had a liver biopsy scheduled, but thankfully, as the date drew near, my liver functions went back to almost normal.  It was concluded that what looked like a major problem with my liver had been caused by IVIg.  Once we stopped that, everything settled down and we were able to stop worrying.  I think my mood for the past few days show that I haven't actually stopped worrying. 

The blood work that I am going for today is just for follow-up purposes.  I am sure it will all come out fine (I will find out on Thursday).  Believing that it will all be okay is all well and good, but there is that awful nagging feeling in the back of my head that is always waiting for something terrible to happen because of all the drugs that we have pumped into my body over the last 16 and a half years. 

It amazes me how much relief I get from just writing about these things.  I am so happy to be writing again... I can't believe how much I missed it.  If you are interested, I am also writing just about every day about Memories, Motherhood, Military and Medicine (and anything else that comes to mind) at
http://blog.rememberedvoices.com/

I am honored that so many loved ones (and some strangers!) care enough to read what I have to say.  Again, all my thanks to those of you who follow my progress, pray for me and think good thoughts.  God Bless you all. 

Feeling Most Excellent!

My good friend Suzie kept telling me over and over all through the four years of pre-school that once the kids were off to school every day that I would be much better.  Turns out she was right!  I am going with combination of 3 courses of chemo and now the kids being in school.  Regardless of what the reason, I am feeling most excellent (as Bill and Ted would say).  At the end of most days, I am slurring, but that is always very quickly resolved with a glass of wine or two :-) 

I haven't been in for steroids for four weeks as of today, and it was five weeks between treatments last time.  I am still taking the mestion every five hours and it is pretty clear if I ever miss a dose.  LOL  I get all slurry and stumble all over the place!  Crazy disease that makes me look drunk, and then I get to drink wine and I don't look drunk anymore. 

So I am feeling this well, and that is after throwing a crazy Halloween party with over 30 friends and neighbors and dealing with Katherine, who has strep (poor baby) and having a terrible cold myself.  In the past, all it took to throw me into crisis was a cut on my finger.  My body would say, "oh... possible infection!  Lets make tons and tons of antibodies to kill it!"  And off to the ER or infusion center I would go. 

Now I really do kind of feel like superwoman.  I am doing just about anything I want to do (but being careful to take care of myself- most of the time- LOL) and for the most part, I feel really good.  I did have a blip after going on a hike a few weeks ago- but who isn't tired after a hike?  My tired just came out as not being able to talk or walk, oh and a little trouble catching my breath.  But I am fine now.  Worth it for a day in the mountains with some of the people I love most! 

The big news is that there is a new drug out there for MS and Dr. Logan thinks this would work well for me.  It is a steroid, but I can inject it at home... and if it works, I can have my port taken out!!! As of right now, the insurance company has rejected it, but apparently that is always the first outcome with this drug, and we are fighting to get it for me. 

Living with MG has been like living on a roller coaster ride. For me, the key to getting through has been to just live in the moment.  Life is full of high highs and sometimes extremely low lows.  You can't spend all your time getting stuck in those moments.  You just have to endure and make the most of what you have.

Remembered Voices

I went in yesterday for a gram of solumedrol.  Not a big deal since it has been almost 5 weeks since I had a treatment!!!  That is amazing considering that most of last year and during the summer I was going in about every third or fourth day for steroids as well as being treated with chemotherapy.  Not to mention Jason has been deployed to Guam for the past 6 weeks.  The strain of being both Mommy and Daddy to the kids would in the past have put me into a crisis, I am sure.  I am thanking God, my doctors and all of you for the break in symptoms!!! 

I have also started a new job as a freelance writer, which I am very excited about.  As some of you know, I was part of a focus group for a new locally based company.  The company is called Remembered Voices and they sell a really cool product called The Voice Library.  I got really involved with them after challenging them to provide their service to as many military members as they possibly could.  On Memorial Day weekend, they distributed 500 gift cards to soldiers deploying to the Middle East.  To my amazement, several newspapers and Fox news sat down and interviewed me!  Not at all what I was planning, but an excellent way to get the word out there and to support our troops.

As I became more and more involved with the company, and they asked me to do some writing for them!  I am very pleased to now be part of the Remembered Voices team.  One of the things I am working on for them is a daily blog.  I would love to share it with all of you and anyone you think might be interested.   http://blog.rememberedvoices.com/

I will continue to write here about my family and my health :-)


Again, I thank you all for following my blog, for praying for me and my family, and for being such a huge support to us over all these years. 

Update

The kiddos with Nannie and GrandDad enjoying the summer in Wolfeboro

I can't believe how long it has been since I have updated. To all those who follow the blog, I apologize! With the introduction of facebook to my life, I have been sending out blips of information there, but nothing comprehensive like I write here. I have missed writing here so much! Just sitting down today to write was a thrill to me!

I read in another blog about MG that people only write about their myasthenia when things aren't going well, so all she could find out there about living with MG was negative. I think that is true to a certain extent- yet there are times when I don't write only because I am overwhelmed by treatments and full-time Mommyhood! So I suppose I don't write when things are very bad and when things are very good. Another example of Claire and her extremes! I either do things 400% or don't do them at all :-) Perhaps we should all pray that I find some way of being more moderate!

I know that reading about the details of my treatment is not of interest to some of you, but my fellow myasthenic readers (and perhaps a few others) would probably like to hear the results of the Rituxan that we decided to go forward with. Beginning in April, I had weekly infusions of Rituxan, combined with IVIg and solumedrol. I had a great month in May and then some trouble again in June, so we hit me with more Rituxan and steroids. July was a tough month for me- the humidity kills me- and I needed weekly steroid infusions. I had another dose of Rituxan in August. Since that time, I have only needed solumedrol twice. I am taking Mestinon every 5 hours, and definitely notice if I miss a dose! Regardless, the Rituxan has certainly improved things greatly, and I am thrilled with the results. I am certain that having the kids back in school has also helped with alleviating some of the symptoms. Just not having to be "on" all the time is a great help.

All that being said, from here on out, I would like to update the blog much more often. Thank you all for continuing to think of and pray for me and for my family. I appreciate all the comments and feedback, particularly from my last post "And so we lie".

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.