Myasthenia Gravis - A tricky little bugger...

Well, I should have known better, really I have been dealing with the reality of this illness for almost a year now. However, I will not let my hope for remission escape me. It keeps me going, it keeps me positive when I feel good. It allows me to make the most of my life which is greatly limited by my MG.

This past weekend was wonderful. I had my IVIG on Thursday afternoon/evening and the treatment went well. Friday I made it to John's field day at school and we went out to lunch before I crashed for a nap and my mg symptoms sprouted up in the evening with the droopy eye and difficulty walking. Saturday, I spent 5 hours at my dad's pool with the kids, it was a lovely day and I spent most of the time floating on the raft with my 3 year old on my lap going for "boat rides." I slept soundly Saturday night and Sunday we had a three hour swim trip at my dads. I was starting to think that the IVIG and Imuran had magically made the turn to where I would have more normal days than not...not so fast Jen!

So this morning I awoke to my husband trying to get me to breathe properly and get me my much needed Mestinon. My speech was slurred and I could not swallow. He got the pill under my toungue (a little trick I learned from a fellow myasthenic for when you can't swallow) and within 30 minutes I could speak and swallow again. It took another 45 minutes for me to be able to move my legs and get out of bed but I think it is most important to push myself each day to not give in to being bed bound. On bad days my brain tries to win the war and just succumb to the illness but I have two little faces counting on my presence and I will not let them down. Even if it means spending the day in the recliner.

I am feeling a little better but my vision is too poor to drive anywhere and I have the lovely foot drag going on when I walk, hello old friend walker...man are my shoes getting beat up! So, today I rest and hope that it will allow me to have a productive energetic day tomorrow. Here's hoping!
Jen

Corragio! What it has done for me and my family.

Okay, first I have to give a shout out to my new friend and (unbeknownst to her) mentor, Lisa Gigliotti. Lisa has lived with two autoimmune diseases, namely Rheumatoid Arthritis and Myasthenia Gravis, and while facing many difficult challenges, pain, loss, and adversity she has never lost sight of what the powerful female mentors in her life instilled in her. Live with courage (Corragio!), never give up (Testadura!), and, there are many things in your life you CAN control.

What a message I needed to hear! While many of you know that the inner Sicilian in me does not allow me to lay over and play dead, I have had many challenges with the disease that has taken over my life since last summer. Like a ship in the night I have been navigating rough waters, not knowing what rough seas lay ahead. Daily pulling from places I did not know existed, the strength to work full time from home, raise my children in a loving and fun household, and make sure the man of my dreams and caregiver (something he did not sign up for 11 years ago) knew I adored him every day.

I feel God's presence and my Nana - Minnie Gegliano Brown - led to me this lighthouse, this beacon of hope - Lisa. I am sure she will be humbled to read this as she is not boastful. She mearly tells her story as it is - true and from the heart. But it would be wrong of me not to acknowledge the powerful change I have already felt sweep through me since finishing 2/3 of her book - Corragio! Lessons for Living From an Italian Grandmother Despite Illness, Pain, and Loss

I was led to this book by my local Myasthenia Foundation of America Chapter's Executive Director - Jamie Sheppard. She said that Lisa would be speaking at our annual MG meeting in June so I looked her up and there was the website www.withcourageican.com I looked at the website and read an excerpt from the book and felt an immediate connection. I too have Italian roots and shared a very close relationship with my Nana (Nonna as Lisa's family addresses her Grandmother), I too have Myasthenia Gravis, and I too am a Catholic Michigander. I wrote to tell her how excited I was to meet her and read the book and she sent a copy to me.

I am currently in the midst of devouring it. There are other similarities we share and the road of life and the cards we have been dealt can keep neither of us down. At a time where I was most concerned that my illness would rule me for the rest of my days, there arrived in my mailbox a beacon of hope. While I know I will fight this battle for the rest of my life - for there is no cure - I will not give up the fight. If it means I continue to endure the IVIG every 2 weeks, so be it. If it means swallowing an obnoxious amount of pills to ensure I can breathe, speak, walk, and talk - so be it. I will continue to fight. My children will have the healthiest mother possible because I will fight.

If you are a reader of my blog plagued by Myasthenia, or any chronic illness, I urge you to read Corragio! It is a story of rising up against all odds. It reminds us that while there are things that are taken from us physically, there remain many things that we control. We control how we react, we control what we do or do not do each day, we control what activity we try (maybe we find out our body will not participate but at least we can smile broadly and say we tried). This book has touched my life and changed my outlook. While I do not know what the future holds, I am ever thankful for the wonderful people I have met on this journey.

Last week, I could not see well enough to drive and had breathing problems so severe I worried I would end up back in the hospital. Today, I drove, I swam with my children, I watered the flowers. To those of you reading my blog not stricken with illness, heed my words - do not take the little things in life for granted, for it is the little things in life that make living so grand. Cherish them, take them in, for they are a gift. We are all on a ship, we can be the Captain of or vessel or a mere passenger, it is our choice. I have one thing to say and it will lead me from this day forward - Corragio!
Jen

My 2nd official participation Blog Hop Friday!

This is a great way to generate buzz. Please visit the following links, , http://www.mypixiedreams.com/ , http://www.mynewlifeasmom.com/ , http://takeamomswordforit.blogspot.com/ , http://www.breebeebracelets.blogspot.com/ , http://aguilarfamilyadventures.blogspot.com/ now take a gander, if you are interested comment or follow and hop along to anyone else who suits your fancy. Happy Hoppin' Friday!
Jen

Cindy's Story - How I saved my daughter's life

This is a tearjerker. I submitted this story about a week ago to Associated Content and they just agreed to publish it. It is the story of how we almost lost Cindy when she was only 6 days old, but how trusting my intuition and in the Lord saved her and beat the odds.
http://www.associatedcontent.com/article/5414564/malrotation_of_the_intestine_cindys.html?cat=25

Jen

A little dose of silence is bliss..

Ahhh, for the past two hours my house has been, knock on wood...silent! I love my family very, very much but this week you would think I lived at the zoo. John, my 10 year old showing off his newest wrestling move. Cindy, my four year old just running, jumping and singing for the fun of it. And Pat, my 41 year old, creating new songs on his guitar...love ya honey.

Anywho - currently, John has been whisked off by my in-laws and Cindy and Pat are napping. No TV, no radio, lights off, drapes open, air conditioning on...Bliss! I know if this went on too long I would desperately want the chaos back but these little peaceful breaks give me time to rest and reflect on what I am so grateful for.

This week brings another IVIG treatment, a long holiday weekend off work, Field day at school, and whatever else life decides to throw our way. But for now, I can ignore my responsibilities and bask in life...what's that I hear "MOMMY" Gotta go - Cindy just woke up, literally! Instead of knocking on wood, I should have prayed, that put me in my place!

Have a Blessed week everyone!
Jen

5 Question Friday

Rules for Five Question Friday: Copy and paste the following questions to your blog, answer them, then visit Punken to link up. If you'd like, the blog hop code is available for you to grab!

If you don't have a blog, but want to play along...feel free to answer the questions in the comments of this post, or any blog along the blog hop way!


Questions for Friday, May 21st:
1. Do you have an iPhone and, if so, how do you get apps and what are your favorites?
No, I have a very old Motorola flip which I rarely use b/c I'm rarely mobile in and automobile;) Love my laptop though..




2. What is your fondest memory of K-3rd grade?
I LOVED learning about the letter people in Kindergarten and had the sweetest teacher...Mrs. Bougois.




3. What makes you cringe at the thought of touching?
handles in public restrooms


4. If you could have any celebrity show up on your doorstep who would it be and why?
Dr. Oz because he is smart, personable, and caring.


5. What would you say is your best physical feature?
My legs, when they work:)

A Bit Preoccupied

Okay, so I can't juggle, at all anymore. One thing at a time. And I have not been tending to my blog like I should. I have been a bit preoccupied with volcanos (I'm still a travel agent), kids with colds (was really hoping for allergies), my eye symptoms going bonkers last week, a stomach bug on Monday (while dealing with volcanos and board meetings and trade shows - that were near the volcano) - OH MY! Not to mention what I have been doing in my down time...yes, I think I still have that, hanging by a thread though. I am working on increasing MG awareness for the month of June. I posted a Vlog about it at http://www.youtube.com/watch?v=10dmkPufXtA so if you are reading this and have MG, check it out. Also, if anyone that contacted me about the PSA is still interested, you have about 24 hours before it is complete so send me your contribution if you are still interested.

Sound Off On Volcanos - I Do NOT like you Mr. Eyja Fjallajokull eruption! - last month you made me work on my IVIG day to help stranded travelers, not that I could do much, now you prevent 1/2 of our US travelers from making it to the biggest trade show in 3 years...I could go on but there are refunds to process!

Sound Off on Colds - Seriously...could you give us a break? Our family really isn't that big! Could we dodge that bullet for say one month...eh? Just a thought.

Sound Off on Symptoms - Do you think you could maybe pick a spot and stay there for awhile? I already know the answer to this but it never hurts to ask. Just when I figure out how to walk without all signals firing my leg works fine, just when I learn how to type with one hand I have to relearn how to type with two, just when I get used to compensating for lack of depth perception...well you get the drift.

Sound of on Stomach Bugs - Yeooowch, you wiped me out! 'Nuf said

On the flip side, sometimes things happen for a reason. Maybe I should chill - just a thought! I am grateful for so much. I am so very greatful for all the wonderful people I have met through this blog and the vlog. You all keep me going and I am blessed to have you in my life.

TTFN,
Jen

Five Question Friday, one day late and deeper in debt:)

Questions for Friday, May 14th:


1. Take your pick...date night, girls night out, or night out alone? date night


2. Can you touch your nose with your tongue? yes, but not recommended


3. What is your favorite flower and why?

Lilacs..I love their scent


4. If you could go back in time, what advice would you give yourself? Do NOT open a restaurant...just one of many pieces of advice

5. If you won the lottery, what is the very first thing you would do? Pass out

Calling fellow myasthenics....

Okay, to quickly give reflection on how things are going, it is like I am on a boat with rough waters, then calm, then, rough, then calm...such is life right? My eyes are definitely becoming more of a bother, I am losing strength and suffering more ocular effects than I have in quite some time. With that said, I can't complain much because I am starting to fall into more of a cookie cutter myasthenia pattern. More "normal" during the day, less so at night. Mornings continue to be tough, by that I mean mustering up the strength and stamina to get out of bed. The insomnia has subsided. I swear I went for 4 solid months of not sleeping an average of 2-3 nights per week. I'm glad that ship has sailed...knock on wood.

So, why the title? I have a really cool project in mind. I would like to invite other myasthenics to participate. Without giviing too much away, I want to create a PSA that really paints a picture of us as a whole while focusing on the snowflake aspect of this illness. If anyone is interested, please send me a message and I will connect with you to go over the info.

I hope spring is in full swing for all of you out there in cyberland. Stay strong! You are all in my thoughts.
Jen

Up and down week...

Well, the last post I was feeling so good. I like those days/hours/minutes. Yesterday was not one of those days. My eyes were just awful. I posted a video on my youtube channel because it was so severe. I could see out of one little slit on my right eye. Fine if you can rest, bad if you have 5 hours of work left. I made it though. And I took it easy last night. After 11.5 hours of sleep I am feeling pretty perky this morning. One cup 'o joe and a mestinon down and I am ready to take on the world:) Though I will not take on the world or the world will take me down.

Today I will cuddle with my cutie pie, watch shows, eat nutritious meals and just relax. Maybe a lavender bath...ahhh, I'm celebrating Mother's Day one day early. Happy Mommies Day to all the fellow Moms out there.

Feelin' groovy..da, da, da, da

I just get so giddy when my IVIG does the trick! I am feeling awesome! Energy..ahhh, strength...ahhh, vision...YES! And, biggest news of all....my baby turns 4 on Wednesday. Cinco De Mayo! Happy Birthday Miss Cindy Sassafrass.

I am feeling blessed beyond words. I am coming up to one year with this mess of a disease and I can say today I am feeling just great. I hope and pray it last through to the next treatment. The weather is certainly helping. Cool enough during the day to keep the doors and windows open and warm enough at night to keep the windows open. The fresh air is, well, refreshing. I just love this time of year. The lilacs bloomed too, I have the fragrance of fresh cut lilacs throughout the house. If anyone tries to say the mind and body are not connected, they are flat out wrong. That is not to say a positive attitude can heal, nor a negative one kill but they certainly have an effect.

I plan to post a new video tomorrow on my Vlog on a good day, if all goes well, to show just how normal I am when I don't have symptoms. Here's to looking at the bright side of life. Thank you for all your prayers and support.

Much love,
Jen