Saturday, May 28, 2011

Med update and gratitude

Well, I have been on the medication and supplement treatment for over 1 week now. Apparently it takes longer to feel the effects and make me all better so I will wait... A little advice when you are taking thousands of mg over the recommended dosage and it says to take with food... take with A LOT of food. I need to eat enough for a football player or sumo wrestler, not just a couple of scrambled eggs.
The shot glass has a pretty nasty tasting liquid in it and it was recommended to add to an 8 oz glass of juice... couldn't handle choking down 8 oz but anyone can handle a shot right? The tea even has something added to it. Breakfast is my favorite meal of the day and always has been. I enjoy sitting down and taking my time eating a great meal.

In the search of health I find I am now also in the search of what made me sick. Mitochondrial myopathy is a genetic disorder but no one in my family has it. They may be carriers and it has just lied dormant but still I wonder if I did something to cause it. Was it the processed food I was eating? Was it the teflon cookware I use? At first I accepted that I was handed this illness and that was fine. But if it is something that I can prevent my children from getting, I will continue to search. My husband and his awesome co-workers started a very healthy diet at work which he has brought home. I will admit that I was VERY reluctant at first. No way was I going to give up my loaf of bread I ate daily or my passion for baking (and eating) cookies and cakes. However, after many talks of, "Why won't you just try it? It can't hurt you, only help! Why are you so stubborn?" I decided to listen to him. And not just to show him I wasn't stubborn. Wow, bad food really does make you feel like crap. I eliminated all sweets from my diet, added lots of protein and eat a ton of fruit and vegetables all day long. My afternoon smoothies are amazing! The kids LOVE them. I even got my dad to drink it and he loves it. My mom... she thinks it tasted like grass but you have to know that anything without chocolate to her is a waste. She did drink the whole thing though. Sorry for calling you out mom.
This pic was taken when I first started making them, I now fill 3/4 of the blender with spinach, chard, kale, wheat grass (all from my garden that my amazing husband made) flax, handful of blueberries, a few strawberries, 1 banana and orange juice. Sometimes I add raw local honey. Mix and enjoy. I always make way too much so if you live close come by for one.

On another note:
I am so grateful for the love and support that surrounds me. I want to thank you all so much for being right here while we take this journey. God has placed the perfect people in my life at the most perfect time. I recently reconnected with a beautiful soul and spirit, someone I haven't seen since high school. When we spoke I felt so full of light and love. A feeling that I have more and more often these days.
I started writing journals to my kids to tell them all the hopes and wishes I have for them. Each journal entry has something about them following their heart. If they do that, they can't make the wrong choice. I want them to be filled with happiness and joy forever and ever. I leave quotes like this one:

"When special feelings come your way, let them flow into your heart. When miracles try to find you, don't hide. When special people come along, let them know what a blessing they are. Let your smiles begin way down, deep inside"
~ Collin McCarty
Thank you for the love!!!!!

Friday, May 13, 2011

The Big Appointment

As we are quickly approaching the BIG appointment we are simultaneously experiencing a multitude of feelings. Excited, nervous, anxious, worried, happy, sad.... the list of emotions goes on. I have been so excited that the appointment is coming up because to me, that means answers and treatment. I can't wait to start feeling better again! But then I start wondering... what if this doctor can't give me answers, what if he can't help me? 5 1/2 months of waiting and I have to keep waiting? After seeing our last neurologist at UCSD we felt very confident that he put us into the right hands of this specialist. When you read about the possible diseases and ailments you might have (I do not recommend anyone ever doing this) fear will take over. What does my future hold? How sick will I get? I have to quickly remind myself that none of us have a crystal ball. We don't know what our next moment holds. Fearing the future is not a way to live. Erase the fears and allow yourself to open your eyes to see what is happening right in front of you. I see my kids playing together - pure joy! I see the sun shining outside - bliss. I hear the birds chirping - peace. I feel healthy and strong and as long as I can take each moment and live in the present I know that my future will be bright because I will always be living in joy!

The Big Appointment

The morning of the appointment that I waited 5 1/2 months for was raining. We decided to leave 2 1/2 hours early because I was so worried I would arrive a few minutes late and they would cancel me. It only took us an hour and a half so we had a wonderful cafeteria breakfast at UCSD. I'm serious, the food was so good and cheap! If I lived closer, I would go all the time.
As I sat in the exam room with Anthony my mind was going a mile a minute wondering if the doctor would be nice, if he would even give us the time of day. He was wonderful! He and the other 3 neurologists that came in to listen and consult. They spent over an hour and a half with us. I felt like I was on an episode of House.

I have mitochondrial myopathy and I will be undergoing further testing to rule out some other diseases. Diseases that should NOT be googled after leaving the appointment. I have medication and supplements to start treatment and will have more blood work done in the morning. If I didn't have that great breakfast, I could have had them done today.

A little background... I started experiencing muscle weakness a year and a half ago which has been progressing. Today's neurological exam showed many of my muscles have atrophied. I had a muscle biopsy done last August that showed my muscles were dying because my nerves are dying. It showed I had an excessive amount of mitochondria in my cells. I continue to adapt to my new "body" and we as a family have taken on a new lifestyle. One that doesn't include as many vacations or Havasu trips but that's ok, because we love playing at home. I am hopeful that with treatment we can stop the progression right where we are so I can continue to do all the wonderful things that I love.

Here is some info on what I have:

What is Mitochondrial Myopathies?

Mitochondrial myopathies are a group of neuromuscular diseases caused by damage to the mitochondria—small, energy-producing structures that serve as the cells' "power plants." Nerve cells in the brain and muscles require a great deal of energy, and thus appear to be particularly damaged when mitochondrial dysfunction occurs. The symptoms of mitochondrial myopathies include muscle weakness or exercise intolerance, heart failure or rhythm disturbances, dementia, movement disorders, stroke-like episodes, deafness, blindness, droopy eyelids, limited mobility of the eyes, vomiting, and seizures. The prognosis for these disorders ranges in severity from progressive weakness to death. Most mitochondrial myopathies occur before the age of 20, and often begin with exercise intolerance or muscle weakness. During physical activity, muscles may become easily fatigued or weak. Muscle cramping is rare, but may occur. Nausea, headache, and breathlessness are also associated with these disorders.

Is there any treatment?

Although there is no specific treatment for any of the mitochondrial myopathies, physical therapy may extend the range of movement of muscles and improve dexterity. Vitamin therapies such as riboflavin, coenzyme Q, and carnitine (a specialized amino acid) may provide subjective improvement in fatigue and energy levels in some patients.

What is the prognosis?

The prognosis for patients with mitochondrial myopathies varies greatly, depending largely on the type of disease and the degree of involvement of various organs. These disorders cause progressive weakness and can lead to death.

If you are interested in reading more info here is a great website:

Thanks for all of your love and support during this "journey"

Sunday, May 8, 2011

Mother's Day

Mother's Day morning I was the first to wake which is very unusual. I enjoyed the peace and quiet to myself and caught up on e-mail and of course Facebook. After about an hour my sweet daughter Alexis woke up and sleepily said, "Happy Mother's Day Mom." She then crawled up into my bed for the best hug ever. Next, Wyatt woke up and he joined in on the Mother's Day hug. What a wonderful morning!! This is what it is all about. This is the best job in the world.
We got up and I made my favorite breakfast while we waited for Daddy to get home from work.
"Love is the greatest power on earth. It conquers all things."
~Peace Pilgrim Mildred Lisette Norman

After breakfast we hopped in the jeep and headed out to our favorite (undisclosed) fishing spot.
"The creation of the heavens and the earth and everything in them was complete."
~Genesis 2:1
My day was complete with the beauty of nature and the love of my family!

These kids caught 6 fish!!!!

"Live today. Not yesterday. Not tomorrow. Just today. Inhabit your moments. Don't rent them out to tomorrow."
~Jerry Spinelli

It was a fabulous Mother's Day and I hope you all enjoyed yours too!

Monday, May 2, 2011

In sickness and in health

Over a year and a half ago I became sick. I will go into detail about that later. In that time I have spent many hours with many different doctors and specialist. In that time my amazing and supportive husband has been right there by my side through it all. Our love has grown so much for each other. Being sick has taught me how to be well. It has taught me to love and appreciate absolutely everything! It has taught me not to sweat the small stuff and that we can not take anything for granted. It has taught me Faith, Hope and Love, with love being the greatest of all.
Anthony has been my caretaker, my husband and the coolest father to my children. (their words) His hand is the last one I hold as I am being wheeled into surgery and the first one I reach for while I am trying to wake up. When I can't cope he dries my eyes he fights my fight, he holds me tight. He won't let me fall. This song says it all... please take a few minutes to listen to it. He is my protector. I feel safe with him. He gets me through each day.

Super blurry picture but see how great he is?

Here we are walking in the Breast Cancer 3-day where he held my hand all 60 miles!

He has given me so much love and the 2 most beautiful children ever. The children that show me joy everyday. He comforts the kids when they are scared because they don't know why mommy is so sick.

Here he is spending quality time with our daughter.
My love for Anthony continues to grow more and more each day that passes and I am so grateful to call him my husband.
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