Summer Break

Schools out... for the summer!!! I have been looking forward to this day since the beginning of September. I am not one of those moms that likes to send the kids off so I can get "me time." In fact, if I do have time for myself in an empty house, I get lonely and can't wait for the kids to return. I do like the occasional escape to the nail salon or lunch with friends though!! Actually, I love those escapes. But as most of you know, the school year was a bit of a struggle getting a certain kindergartner to happily and willingly leave in the morning. I totally get it, it is way more fun at home. Freedom to do whatever, whenever. Now we are officially on Summer Vacation!! Sleeping in, (and when the June gloom goes away, waking up to the sun beating through the window) taking our time to eat a nice big breakfast, art projects, playing outside anytime, swimming, just enjoying every moment together.

Here Alexis is making a placemat

We even used glitter and I got in on the action and made one with fireworks

After all the glitter and paint we needed a fun way to clean up... Wyatt helped with that

Then it was time for pedicures... *photo courtesy of Wyatt

I am not wonder women nor will I ever claim to be so while I am enjoying the day with the kids, the dishes will sit in the sink... possibly until tomorrow when they triple in size.

It is 2:00 now and we are pooped. (we meaning me) I am going to have to pace myself so they don't spend the rest of the day watching t.v, which would be absolutely fine with me if they did.

Happy Summer Vacation everybody!!! Enjoy the longer days and the sunshine (with sunscreen)

Hope in the midst of frustration

"God puts rainbows in the clouds so that each of us...can see a possibility of hope"

Maya Angelou

It has been 20 days since I began taking my "mito-cocktail" and unfortunately I am actually feeling worse, significantly worse. There have been more "bad" days than "good" days lately which is really frightening. I have become intolerant to the heat and get sexy rashes on my legs.

I realize some of you may not think this looks sexy, but that is your opinion. When I am outside and at the weather is below 65* this is what happens to my hands... (this has been going on for years... nothing new)

Walking up the stairs has always been tough but I feel the pain on the 3rd step now instead of the 6th... and we have 18 in our house.

I have pain in my legs while laying in bed and nothing I do elevates the pain, except a massage from my great husband. My speech will get slurred occasionally. My muscles so weak they wobble and shake. Limited reflexes make my feet feel weird when I walk. I never had problem with headaches... until now. I am pretty sure they are stemming from the weakness in my neck so if I veg out on the couch I can quickly feel better. However... I have 2 young children so that only lasts for a few minutes at a time. Anthony will tell me to just lay down and take a nap. Somehow he is able to take a great power nap when he's with the kids. I have no idea how the kids don't ask for a peanut butter and jelly sandwich or need help in the bathroom in those 20 minutes. He has even been successful in getting Wyatt (our 4 year old) to fall asleep with him!

So, recently I have spent much of my time laying down or sitting in my new zero gravity lawn chair watching the beautiful life around me. Hopeful that soon I will feel better and be able to take this experience and grow so much from it. I am so grateful for the support that I have, yet I still have a very hard time asking anyone for help. I know that I will be needing it more in the future and I don't want to burn anyone out.

We must enjoy every moment we have... like I have said before, we don't know what our future holds. Make today your best day ever! Live in the moment! Be aware of what is going on around you right now. Instead of daydreaming about the future or the past, open your eyes to what is right now. This is what we have and it is beautiful. I am grateful when the kids snap me out of a daydream because it brings me back to now, the most important time. Everyone can get through a moment and before you know it you will have conquered something huge.

I will continue to climb the stairs for I know there is a beautiful view at the top.

"Once you choose hope, anything is possible"

~Christopher Reeves

Change

Change is inevitable. It's going to happen no matter what. Seasons change (sort of in San Diego) people change, feelings change, life changes. There are many songs about it. The Brady Bunch even sang about it.

I love change. My daughter fears change. As a baby I was constantly stimulating her with something different and exciting. Everyday we went somewhere new. Routine was not something she took well to. And then it all changed. It takes her a very long time to adjust to anything new. The beginning of kindergarten was a huge change... I realize that is a big one on its own. However, it took her 1 month to finally accept the change of a new teacher. 1 month of screaming and crying EVERY morning. She did great for the year until.... a SUBSTITUTE!!! As soon as we were walking up to her line I felt her hand squeeze tightly in mine. I used every positive word in the book and showed so much excitement for her but nope, she wasn't going. I had to sit outside with her until she calmed down enough to go sit in class. Of course I went in with her and sat in the back. 45 minutes later she was still crying. I know many people will disapprove of my decision but I took her home. It wasn't worth the pain for her or me. I taught her at home instead and she was happy as can be. The next day came.... another substitute!!! We had a long talk the night before about what we were going to do and how strong she was going to be. Nope. She came home with me again. Day 3... oh please teacher come back already! I don't need to get up early and rush out of the house for nothing. Phew, her teacher was back. The same teacher that took 1 month for her to be comfortable with was now her security. It's a good thing she only goes to school 3 days a week (home-schooled the other 2).

Today, Alexis lost her second tooth. The first one was very exciting for her but as soon as the next one became loose, she didn't want it to fall out. She wouldn't even eat today because it was bothering her so much and she feared that it would fall out. The poor child was starving so I let her suck on chocolate chips. It fell out in her mouth full of chocolate and she looked at me with big eyes, tooth in her hand and started crying. Then she started spitting because it felt weird. Spitting chocolate everywhere. After an hour she adapted to the "change" and was finally happy about the tooth fairy coming tonight. Some changes that happen are big and for her it's no big deal. She cut over 10 inches off her hair to donate to Locks of Love and she was happy about it the whole time. No big deal. A moving truck was parked on our street with new neighbors moving in.... BIG deal. She wanted that truck removed immediately. Could care less about the fact new people were moving in, the truck needed to go.

Change is something we all have to learn how to deal with. Go with the flow, let life happen, let go of resistance. Life is great! If He brings us to it He will bring us through it. No need to worry now right?

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!!!!!

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: http://www.mitoaction.org/mito-faq

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

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!

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. http://youtu.be/BW9zMSwKIdU 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.