I spoke at our MOPS (Mother's of Preschoolers) meeting at our Church last week. Every year the mentor moms put on a beautiful Tea and Treasures party for us filled with delicious food, fellowship and speakers. This year, I was one of the speakers and I was so honored to get up in front of my peers and tell my story.
Here is my testimony:
Life as I knew it changed 3 years ago. I won’t say it changed for the worse, it just changed for the different. The life that I thought I had planned out was a little different than the life He had planned out.
As I sit up here and talk to you today most of you would be surprised that anything could possibly be wrong with me medically. I look healthy and everyone says I look fine so I must feel fine, but I don’t.
November of 2008 I walked in the Breast Cancer 3-day with some of my best friends. I recovered quickly from the blisters and pulled muscles and signed up to do it again.
The next year, November 2009 I walked with my husband. I hadn’t been feeling that great the week before but by the time the walk came I was ok.
The first day of the walk, I injured myself. First my hip, then my knee, then my shins. Each step I took, I was experiencing excruciating pain. I kept walking. I knew that my mind was stronger than my body and I could get through it. My husband and I joked about the fact that they were just injuries and it wouldn’t kill me. We kept walking.
Hand in hand, all 60 miles, we completed the walk.
A month later I was still not recovering from the injuries so I went to the doctor.
2 months later I still wasn’t feeling better so I went back to the doctor and the journey began.
I saw many different specialists and had many different tests ran. Nothing was matching up or giving us clear enough answers to what was going on.
I finally had a muscle biopsy done in August of 2010.
I went to the post op appointment with the surgeon alone. I assumed everything would be fine because from what I read, it is really hard to get any answers from muscle biopsies. It is a complicated process and everything has to be done precisely... many steps were involved in getting that piece of muscle down to UCSD at the perfect temperature in a timely manner. The surgeon even said nothing would show up because he was certain I had MS.
The doctor looked at the results and from the look on his face I immediately knew something was up. He explained that my muscles were dying and atrophying because my nerves were dying. He couldn’t give an explanation as to why this was happening so he said I needed to see my primary care doctor right away so I could be sent to a neurologist.
I took this new information and sat in the parking lot on the phone with Anthony, my husband and that’s when it all hit me.
I was crying with him on the phone trying to explain what the doctor had just told me and all I could say was something is wrong. I told him there are 3 things going on... type II atrophy something, and something else, something’s dying. I can’t remember. That was a hard moment for the two of us to not be together for. That was one of many moments that I was brought to my knees.
At that point, I had been sick for 9 months but didn’t know why. Now I was getting answers and they weren’t the kind that came with fixes. I saw my doctor that next day and he was just as perplexed.
The neurologist I first saw sent me to UCSD to someone that he would trust with his own family members. He knew he wasn’t the one that was going to be able to help because this wasn’t his area of expertise. I needed a rare disease specialist. At that point we started calling it an exotic disease, it sounds much sexier.
Next step was a nerve conduction study. They stick needles into my muslces and make me hold a position to stress the muscle. The needles were great, holding the muscles was miserable.
When Anthony and I drove to this appointment we talked about how precious life is and how important it is to really live.
Live like you are dying.
We were getting nervous because all along we have been praying for answers and we knew we were getting closer. We were nervous because we weren’t sure we actually wanted to know the answers. We decided right then that if we got any bad or funky news we would take the less responsible route and plan an exotic vacation to Bora Bora.
While I lay on the bed and 2 neurologist were conducting this test with puzzled looks on their face and saying words like abnormal, no this is not good, I had tears running down my face and I looked over at Anthony and mouthed, Bora Bora.
Something to look forward to. Although we have now waited too long and that dream may not be able to become a reality.
We were now given more information as to what was going on inside my body. I have an excessive amount of mitochondria in my cells. I have a disease called mitochondrial myopathy.
I now see one of the top mitochondrial specialist in the US down at UCSD and when I go to my appointments I feel like I am on an episode of House. I just wish it was more like an episode of Greys Anatomy.
The mitochondria which are inside our cells create more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail.
Imagine your body is a battery. You start off charged and as the day goes on and the more you do, your charge wears out and before you know it, you are running in the red zone and then you stop working. I deal with this on a daily basis. Some days I wake up and my charge runs out by the time I get in the shower. Other days it doesn’t run out until dinner time. Those days I am so thankful for.
With this disease I experience:
muscle weakness and muscle fatigue
vertigo and vestibular weakness
complications with my endocrine system
breathing and heart problems
autonomic dysfunction which causes blood pressure and body temperature problems
It sounds scarier than it is. Maybe because I am the one going through it, it doesn’t seem that bad. I do get scared when new symptoms arise because then I realize it’s progressing. I have so much hope that the disease will stop progressing and even repair itself. Even though there hasn’t been a case where this has happened, I am eager to be the first. I think the main reason I am not scared is because I have God. He is with me through it all. I know He will bring me through it.
This disease is genetic and I pray that I did not pass it down to my children.
They are being watched and if they start showing any symptoms, they will be tested. I don’t want to put them through any more than they have already been put through.
They are living with fear and it breaks my heart. They can’t quite understand what is going on with their mom but they know.
They know I’m fragile, they know we have had to change our lifestyle and they have not once complained.
My daughter prefers to stay home and take it easy with me and I don’t know if it’s because she just wants to make things easier for me or not but I want to make sure she doesn’t miss out on living her life.
We played hard when they were babies, beach camping, yosemite trips, going to the river every other week, living it up. It has all stopped because of me yet they are not mad at all.
During the past 2 years I have become closer to God than ever before. I have always had a strong relationship with Him but getting sick has helped me see the light.
I see beauty everywhere I look. I find joy in everything I do. To me, everything is a sign from Him.
He is everywhere with me and I couldn’t be more grateful.
I am not walking alone.
Even when I have those moments that are so dark and scary, He is there to lift me up. I know He will always be there.
Faith is the one thing I have not lost.
I have been blessed beyond belief. More positives in my life than negatives. More ups than downs. More light than dark.
God has provided me with great doctors. The nations top doctors right here in San Diego. That in itself is a blessing. He has provided me with an amazing family that cares so deeply and is so supportive. He has even given me neighbors that are always there for us as well.
Having something like my health taken away from me has given me strength in other areas of my life. I love more passionately, I have more patience, I can see clearer, I have a deeper appreciation for life and am extremely grateful for the love, and friendships that I am surrounded by.
I don’t know what kind of future I have in store for me, but realistically, no one knows. Only He does. I love my life and pray that I can stick around a little longer.
I am also not afraid to die. I know where I am going and who I will be with. But for a long time I was to afraid to admit that. I felt that if I admitted it, then He would feel He could take me now. I am not ready to go now, I have a family to raise. So for now, we will live a life of love and joy and live for Him.