Diet/Exercise Program

I have had a lot of questions on my diet and exercise program so here's the skinny.....or more like my own personal hell :) LOL!

Supposed to be eating 122 grams of Protein daily. For a carbaholic, this is obscene. 70% of this protein needs to come from animal products (so nuts, beans, veggies, soy don't count) having to do with branch chain amino acids to build muscle. Supposed to be low carb and get carbs from fruits and veggies mostly. All protein supplements must be whey and must have more protein than carbs.

In addition to the restriction, I am supposed to be eating like 6 times a day, increasing caloric intake and increasing potassium intake to help with increasing protein. This is super hard with a decreased appetite.

"Sub-maximal" exercise is highly encouraged so I don't hit my glycogen stores. This means I move slow and slower LOL! Keeping my heart rate way lower than I have had in work outs in past.

Taking amino acid supplements - L-alanine, L-carnitine, Ubiquinol, DHA for omega 3's, other supplements and meds too which I personally think this should be included as a meal! LOL

So What Now?

So all in all, what is going on for those who don't know? Very confusing stuff, but last Dr. doesn't think it's Pompes, although, he said he could be wrong and will see with the muscle biopsy. What he does know is that whatever this is, there is a definite problem with glycogen and that although we may not know cause, we will continue to treat the disease process the same.

Dr. also said my problem could be due to a lot of things, other diseases out there that are rare and kinda tough to go into at this time, or a mitochondrial malfunction.

Now waiting on muscle biopsy. If biopsy + we will know for sure what I am dealing with, but won't know results for 2-6 wks. Praying for SOMETHING to show up.

If biopsy results normal, Dr. thinks problem is related to mitochondrial malfunction/mutation initially caused by a possible virus.

Needless to say, my high protein diet is much more strict, my exercise program is cut down in intensity. and I have been placed on more supplements/amino acids daily.

I am supposed to check in, in a couple weeks to let the NYC Dr. know how I am doing and go from there.

Will continue to persevere, have faith and see what God plans next.

It's a God Thing!

With emotions brewing, fear abounding and a burdened heart, I hit my knees, barry my face, and begin to pray. My prayers turn into a conversation with God I was not ready to have. With tears streaming down my face, I listen to what God says and all I can hear is that I must sacrifice myself for others, show my weakness, lose my pride and begin to tell my story. I listen, stand up, wipe the tears and write down my thoughts on paper, throw the paper into my bible and walk away. Once again, my heart is tugged and I am led to go back and read my bible where I tossed the paper. I open to Matthew 11:25-30 "rest for the Weary".

So now I am confident that God has a plan and events occur one after another revealing God's work and proclaiming His name. Later in the week, I posted several things on facebook to later find out a friends husband was going through the same experience and was led to read Philippians 1:19-24.

I then go to NYC to see the final Dr. in all of this mess. Confident that answers will be revealed and the 4 and 1/2 year search will end. Two long days with multiple conversations, assessments and a muscle biopsy lead to again, unanswered questions, uncertain diagnosis, and a sit and wait mentality for biopsy results. A plan for treatment is developed and refined with lifestyle modifications and supplements. I am crushed, once again with no definitive answer and false hope.

Trying to remain faithful, patient and trusting I sit and wait. Fear and uncertainty fill my head until today. God definitely reminded me today that things will be ok. A message was preached about despair and to choose faith over fear. Finally, led in Sunday school to take a closer look into Romans 12:1-2.

As I have stated before, some may say coincidence - I say Divine intervention.

Perpetual Search vs. My Sanlity

As a provider and Christian woman, to me, praying for a diagnosis, no matter what the outcome, was, and is, a horrible thought. Especially when my usual view is to be healthy, live life to your best and move on with diligence and faith . But as a patient, each day I prayed that someone, somewhere, would figure me out and that I wasn't crazy. That the Doctors could actually see what I was feeling and understand my struggle. Each visit to Cleveland led to hope to only fall again to the place of uncertainty, self questioning, and declining health.

The last visit to Cleveland provided insight resulting in a positive test, FINALLY. My alpha glucosidase level appeared low. Now, where one challenge ended, a new one began.

I finally could let my secret out and let others know because, you see, I had told very few people about my issues, being to proud, not wanting pity, help or my issues to be noticed.

My doctors spoke to more doctors and were developing a plan, but still unsure of a diagnosis, I was encouraged to see yet another doctor in NYC for confirmation. This plan brought about fear, what if we haven't found the problem, what if I start back at square one again, what if I have told all these people about a problem I don't have, and worse.....what if I come home again with nothing?

About Me

Four years ago I embarked on a journey that I never thought I would travel. You see, as a Nurse Practitioner, I took care of people, not ever asking to be taken care of myself. Now, I have been humbled to do both, and share my story from both a patient and provider prospective.

My journey begins over four years ago like most 30 - 40 year old women who present to their doctor with fatigue, weakness and just not feeling "right". Of course I was passed off as being a stressed Mommy, wanting to have it all, and was handed antidepressants. As a provider, I thought, hey worth a shot, I had seen numerous amounts of patients just like me, in fact way too many to count.

As time progressed though, new symptoms developed with each "episode" and I became weaker, more fatigued and started developing muscle spasms, the inability to do daily tasks such as laundry, climbing stairs, and at times, brushing my teeth or washing my hair. I couldn't walk upstairs or get out of a chair at times. My hobbies of working out and playing tennis were no longer doable - not by choice but by my body's limitations.

How could this be, I was active, happy, involved with my children, husband and friends - something was wrong!

I sought help from Dr.'s in many specialties, all not knowing what to do, handing me random medications to try and fix the symptoms without finding a cause. The message from all the Doctors was the same..."Something is wrong, I would love to help you, but don't know how I can."

Finally, with the help of a physician and friend, a team was created in my home town to then come together & send me to Cleveland Clinic for evaluation. Cleveland had it's challenges of emotions, hopes, but in the end led to a one test that was of question. This finding leads me to the rest of my story and my blog.