Myasthenia Gravis info...

I know some of you are not familiar with Myasthenia Gravis so I thought I would give ya some information so you know what I was talking about in my last post about the flu.
Here is a link that gives wonderful information...
http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm#165423153
Here is some information on me and my time with M.G.
I was diagnosed when I was 16 (1991) when my mom noticed after I came home from an overnight trip for school that my eye looked like it was "drooping" (My mom knew about MG since my aunt has it as well). We went to the doctor the next day and they weren't ready to diagnose me right away even though my left eye was about halfway shut and said, let's just wait and see if it might be an infection affecting her eye. By the next day, my eye was completely shut with just a slit opening. We went back to the doctor and they sent me to a neurologist. They did the edrophonium test and immediately my eye opened. That was the definitive diagnosis. I was placed on Mestinon (the drug of choice for MG) and have lived with it ever since.
In 1994, I was having more difiicult symptoms and went to a new neurologist who did a CT scan and found out I had a Thymoma (a benign tumor on the thymus gland) and sent me for surgery to have it removed. Yes, today I have about a 5 inch scar down my chest (it was the same type of surgery as open heart since the thymus gland is located in the chest wall). I did very well after surgery and needed limited medication and we almost thought I was one of the rare cases that had been "cured". Unfortunately not.
In 1997, I went into my first "real crisis" and had undergone 2 weeks treatment of plasmapheresis and was placed on high dose steroids at that time. I weaned myself off the steroids slowly after 8 months since they were awful and causing me more issues than they were helping. (yes, my neurologist knew). Again I did very well and had even gone off the medicine for a while again until...
In 2004, I went into another crisis and needed plasmapheresis again.
Since then I have had some issues and just take the Mestinon at times and do fine but there are times as in both of my crisises that the medicine just does not work. I have been tested for all antibodies associated with MG and have been negative for all that they know about. However, the only thing that will "pull me out" of crisis is plasmapheresis so they are removing something that my body does not like :)
Usually my first symptom of MG is that my left eye will droop and my vision gets a little blurry. Second, my right eye will start but never closes as much as the left one does. Then I will get very weak in my arms and legs and every neurologist I have ever been to say they can tell in my voice as well (I can't figure that out but they can :P).
So that is me and MG in a nutshell - I thank God that it has never affected my breathing and I have never had to be on a ventilator because of it even though I have met those that have :(
God is good and there are months I can go without medication and you would never know I have it and then there are other times when I need something more. I am grateful that God has kept me safe and that I pretty much continue to function as any "normal" person the majority of the time.

Stupid flu...

Yes, it's true. A strain of the flu not covered by the vaccine has come to the Bernetich household. Kira had been running low grade fevers Mon-Wed (100.2 was the highest) and the only thing she was complaining about was a headache. The fever broke on Wednesday afternoon so we sent her to school on Thursday. All day Thursday she was fine. She went to school Friday morning and I had gotten a call that she had a 99.5 fever and needed to be picked up from school. I had just gotten home after working and really all I wanted to do was get into bed since my neuro-muscular disease (Myasthenia Gravis) had started to kick in at work. I went and picked her up and took her temperature and it was 100.6. I called the pediatrician and made an appointment for her for yesterday afternoon. We both went to bed and slept for a few hours and then got up and went to her appointment and they tested her for strep and the flu. I truly did not think anything would come back positive especially with her symptoms being so limited. Well, supposedly the flu test is supposed to run for 10-15 minutes and hers had 9 minutes left and was already positive. Even the pediatrician said that just by her symptoms she would not have guessed flu. Dr. Lopez also looked at me and noticed me having trouble. I told her I have M.G. and my symptoms started the night before and she immediately said she was going to put me on Tamiflu as well since she said that I might be trying to fight off the flu and of course it caused my immune system to be "off" and has triggered my M.G. Made perfect sense to me. She also prescribed a prophylactic dose for Dave and Andrew too and told me to "bump it up" to the treatment dose if they started to show any signs of sickness. To be honest, I was kind of excited to know there might be a reason my Myasthenia has kicked in since I have been really good for over a year as silly as that might seem. So for now, we are all taking our Tamiflu as prescribed and I have rested so much last night and this morning, thanks to my wonderful hubby who let me sleep for many hours. We thank everyone for their prayers and truly appreciate them!!!

Hope vs. Faith....

I have always wondered about the difference between the two.

Hope is defined as (just briefly looked up some definitions from the web):

• a specific instance of feeling hopeful; "it revived their hope of winning the pennant"
• the general feeling that some desire will be fulfilled; "in spite of his troubles he never gave up hope"
• promise: grounds for feeling hopeful about the future; "there is little or no promise that he will recover"
• expect and wish; "I trust you will behave better from now on"; "I hope she understands that she cannot expect a raise"
• someone (or something) on which expectations are centered; "he was their best hope for a victory"
• be optimistic; be full of hope; have hopes; "I am still hoping that all will turn out well"
• intend with some possibility of fulfilment; "I hope to have finished this work by tomorrow evening"
• one of the three Christian virtues

Faith is defined as:

• religion: a strong belief in a supernatural power or powers that control human destiny; "he lost his faith but not his morality"
• complete confidence in a person or plan etc; "he cherished the faith of a good woman"; "the doctor-patient relationship is based on trust"
• religion: an institution to express belief in a divine power; "he was raised in the Baptist religion"; "a member of his own faith contradicted him"
• loyalty or allegiance to a cause or a person; "keep the faith"; "they broke faith with their investors"

I think I have always had hope -- hope that our support will be raised, hope that God would send us quickly, hope that our home would sell quickly, etc...
But I think faith is what I have been lacking for when trials and struggles come or when things don't go as I think they should, I am quick to cry and get angry, and complain. Faith is more than just trusting, it is a complete and utter reliance on the creator of this world, the One who has given me salvation. It is complete trust even when things don't go as I had "hoped" or planned knowing that His ways are higher than mine for He created me and knows my inmost thoughts and what I need the most. It is knowing and having confidence that He has called us and will bring it to pass when His timing is right. It is knowing that if I could see things as God, then I would request everything that He is allowing to happen, if only to grow my faith :)
I know many of you have heard this analogy before but it is one that is good to hear again for reminding us of the beauty that God creates in each of our lives.
God is the designer of our lives, he is creating, and weaving, and designing the beautiful tapestry that He wants for our lives. Now, what happens when you look at the underside of a quilt or a piece of tapestry - it is not that pretty. It has threads out of place, and looks like a jumbled mess from the underside but when you turn it over or see it as the designer has intended, it is beautiful with every perfect piece in place.
Even though I struggle and fail, I pray that my life is a beautiful tapestry that God can use to bring glory to Himself and make His name known so it is my prayer that when these difficulties come, that my faith may be strengthened and His glory be revealed!!

Birthday Pictures :)

So here are the pictures from my birthday. My necklace has not been shipped yet so I will post more pics of it when it comes. Here are the beautiful flowers and the poem Dave wrote (yes, I am sure he will be mortified knowing that I posted it but I truly want to have memories of such an awesome day) and the slippers my awesome kids got me. :)

Happy Birthday to Me!!!!!!

Yes, it's true, I am another year older. 36 - WOW!! Truly, I don't really have that much of a tough time getting older. We'll see in 4 years when 40 hits :). God has blessed me so much in my life that really, how can I be upset???
It truly was a wonderful day(s). It all started Monday since we all had off. The kids were so excited to give me their gifts and cards that they could not even wait for my "real" birthday. Dave had taken them out earlier while I was still asleep to get me a gift. They knew what I wanted - slippers!! Yes, I am an extremely cold person and my feet freeze so slippers was probably the best gift they could have gotten me :). The cards they gave me truly were indicative of who they are as people. Andrew's card was funny (of course) and Kira's was taken directly from a sweet Hallmark commercial. Andrew was excited later when he found out that his was actually a Hallmark card too - haha!! Next it was Dave's turn. His card was beautiful and he always seems to make me cry. He also brought home pizza for lunch later which I was really excited about. I do truly love to cook but sometimes I really just don't feel like it. We spent the day as a family just playing games and enjoying our time together. Yummy Tiramisu cake was the perfect ending to my pre-birthday day!!
Tuesday morning (my real b-day) came and I was so lovingly awakened by a beautiful serenade of the Happy Birthday song from the 2 most handsome guys and 1 beautiful little girl in my life!!
It was a wonderful way to start the day. The kids headed off to school and Dave headed to work so it was just me. I checked my e-mail and was utterly in awe by all the amazing birthday wishes that were posted for me. You all are awesome! I enjoyed my quiet time with the Lord and reading my Bible after that and then off to take a shower. As I was coming downstairs after getting ready, I received a phone call from a very handsome man that I should check outside b/c there may be something there. I opened the front door to an amazing bouquet of flowers and an awesome poem written to me by the man of my dreams!! He also told me he wanted me to order the hand-stamped necklace that I had been wanting with the kids names on it!! Yes, it was a truly wonderful surprise!! After a day of just "bumming" on the couch, my family took me to Santi's for a truly wonderful dinner. It is a yummy Mexican restaurant and I always get the same thing. Grilled shrimp with garlic, avocado salad, and spanish rice. I can't ever seem to try anything different b/c this dish is sooooo yummy!! After dinner, it was back home for a restful evening complete with GFA prayer night. Yep, definitely a truly happy birthday!! Pics to follow :)

Don't you play with your food?

Apparently my son does. Had to take a picture of his pretzel dragon breathing fire on a poor young man and his friend trying to save him with his freeze gun - so creative :)

Reminders....

Have you ever had God do something amazing in your life (of course, we all have) but after a few months or even years, you forget? When I was 14 I had an injury that caused me to be paralyzed for 7 months. The doctors had actually told my parents that I may never walk again. Well, as you know, I walk today and God truly performed a miracle in my life. Yes, maybe once a year I remember this story (on the day it happened) but not always. It is so easy to forget the miracles and even everyday blessings that God gives us in our lives until something happens and it reminds you all over again...
Last night and today I have had some of the worst pain and similar feelings in my right leg that I had 22 years ago. I believe as God has really been working in me to trust Him more, that maybe He allowed this to help remind me of His blessings and miracles and that He truly works for our good. (Romans 8:28 - And we know that for those who love God all things work together for good, for those who are called according to his purpose.)
In our support-raising to go to GFA, it has been a dry time the last few months but God has really been working on my heart to trust Him more and know that He is in control and will raise our support in His perfect timing. And to also realize that He is a God that still performs miracles today!!!!!

CraNkY pAnTS!!

Yep, that has been me - I have been snippy with Dave, the kids, the dog - ugghhh. I think part of it is that I have been really tired. Working nights is no piece of cake, I don't sleep well during the day anymore and then I am back to work so I could potentially be up for 48hrs with only 3-4 hrs of sleep. No, I am not trying to complain - just being real! I am blessed to have a job and help provide for my family but I do get frustrated at times in regards to this. The good thing is that I work 3-12 hours nights one week and 2-12 hour nights the next so on my 2 day week, I feel great :). I guess it's a good thing that my 2 day week is coming up or someone in my family may just buy me these :P

Happy New Year!!!

Wow - truly, where does the time go? I still can hardly believe it is 2011 and I can't wait to see the exciting things that God has planned for us this year!!
I have never been one to make resolutions for the new year but I have decided to make one this year and that is to be healthy. Being healthy encompasses so much I think. It most certainly includes diet and exercise but it is so much more than just that. I want to be healthier in the foods we eat. I have started making more and more homemade things and not just store bought and you know what - it is so much yummier :). I have made homemade granola, homemade granola bars, kale chips, sweet potato fries and chips, and even homemade laundry detergent. It is not hard and when I serve it to my family, I feel so much better. I want to be a better caretaker of the body God gave me. I don't believe it was his intention for us to be unhealthy and overweight. After all, when we are healthier, we are able to do so much more for Him!
But again it's not just my outer body but the inside as well. This year has been a true growth time for me in my quiet time and Bible reading. I have truly stuck to a daily reading of God's word and will be excited when I can say soon that I have read every book of the Bible!! But I want more, I yearn for more...
for more of God, to be more like Him, to be the woman He has always wanted me to be! I struggle in my prayer time with God - yes, I pray almost everyday but I know God desires more - more of me. More of a desire to talk to Him and have Him speak to me in those quiet moments.
So for 2011, yes I am making a resolution but not one I don't intend to keep - one that I pray will continue to be a reality from now on. So if you see me looking like this
Encourage me to look like this...
And especially this :)