Pack The Halls With lots Of Folly

Have you ever felt like you were the object of a big pin ball game? In fact bouncing from side to side would best describe my shopping experience on Black Friday afternoon. I was going shopping with my future daughter in law, Sara, who was running late. I saw an attendant pass my car with an electronic cart so I asked if he would bring it to me and he did. I proceeded to go into the store and do some shopping. While waiting for Sara to arrive I went into the men's department to shop. The aisles were so narrow with the clothing racks all close together. I had to maneuver the cart  several times,  I went forward, hit a clothing rack then back up to bump off another rack, repeat, turn wheels, hit a rack, repeat again. Each time I bounced off the racks like a pin ball off a bumper. It's like a Humvee trying to fit into a parking spot designed for a Honda. I finally was able to turn the cart and started down an aisle when the wheel of the cart caught onto one of the clothing racks dragging it behind me. I had to rearrange the men's department just to to turn around. Released from the snares of the devilish racks I moved forward to get out. As I approached the end of the aisle I saw it was closed off and packed with foolish sale items offered on Black Friday. “You've got to be kidding”, I stated out loud. You guessed it, I had to back up and try all over again to turn the cart so I could be free of this nightmare. Backing up, I banged into a rack causing me and the cart to jolt. One man near by started laughing. Most people just looked the other way. I'm sure if someone video taped this and posted on You Tube it would bring much laughter to those watching. I was so exhausted and flustered by this time. I worked up a sweat and had to use the restroom. I found Sara and told her I needed to use the facility. So both of us proceeded to go into the woman’s room. Unfortunately this experience was worse. I was unable to even get into the restroom they have a small hallway and the cart is way too big to fit. I had to back out of the bathroom and into a maintenance closet so that I can try and turn the cart. I had to physically get out of the cart where Sara and I had to pull it manually to straighten it out. With my legs crossed, I kept praying I wouldn't fall or loose control of my bladder. Sara is saying “Mom be careful, what are you doing? Get back in there and let me pull it.” She's just a tiny little thing and I could not see her being able to pull the cart with my butt in it. Between the both of us we were able to get out of that predicament. Once again others are standing near by but no one offered to help, there weren't any store clerks around either . During this whole experience the only person who showed any sympathy was a little girl shopping with her baby brother. I was backing out of the aisle and hit the shelving unit. She comes running over, “ Are you OK?" she asks. Her parents should be very proud of her. I know I was. I wanted to give her a big hug but instead made it a point of telling her how kind she was to ask. Having worked up an appetite and still needing to use the restroom we left there and went to a near by restaurant.

I decided to write a letter, sharing of my horrible experience, to the guest relations department for that store. I received a reply stating that they were very sorry for my experience but they meet the requirements for the ADA (American Disability Act) and in the future if I have any problems they have Redbox telephones to use to call somebody and they can come and help me. Well while I'm stuck in the men's department there is no red phone for me to have access to nor do they have red phone's in the woman’s restroom . I then called customer relations in the corporate office and explained my situation to them. I'm not looking to cause trouble or report them to ADA but look into the situation and find solutions. They need smaller carts, instead of the Cadillac version expected to fit into the narrow aisles. I also suggested to make the restrooms more handicapped accessible where buttons could be installed on the outside of the doors enabling them to open automatically. Once again I received,  "Thank you for your response. We are sorry for what you went through. We really do care what our customers think. I will pass this information on to our corporate office". Unfortunately I don't think that anything will change.  This store is one of the few stores that offer the electronic carts plus they have the automatic door opener to get into the store. The way it is now I'm like hurricane run wild. Shoppers beware!

Psalm 40:1-3

“I waited patiently for the Lord to help me. He turned to me and heard my cry. He lifted me up out of the pit of despair out of the muck and the mire and set my feet on solid ground and steadied me as I walked along.”

I went canoeing, a few years back, at a local state park in South West Florida . I was with two other people when our canoe tipped over. The others were able to wade through the water and onto the shore. I proceeded to follow the others. However, with my leg braces on covered by pants, a vacuum of water got in between my legs and braces. It caused my feet to sink into the mud beneath the surface. I couldn't lift my feet. The water was waste deep but my feet were sinking. I cried out for help. While waiting for someone to come get me, I looked up to read a sign saying swimming was prohibited due to alligators in water. “Oh great if I don't drown I'll  get eaten by alligators”, I thought. Finally two men jumped out of their canoes and one by one they lifted my feet out of the mud and I was carried onto dry land.

Today I find myself stuck once again. This time emotionally. I don't know what my purpose in life is. I take a few steps in a direction I would like to pursue only to find myself stuck and sinking. I mentioned previously in my blogs the importance of support. My husband is going through his own stress and so we do not do many things together. Just this past weekend a few family members got together for a fun event and I was excluded as they knew physically it would be difficult for me. My son and his family are a blessing and they never make me feel like a burden. However, with their work and school,  I might see them once a week. I have asked friends to meet for coffee and we have to set it up like months in advance as their lives are so busy. I meet two times a week for fellowship at bible studies and do enjoy my time there. But other than a few a hours a week I spend most of my time home, alone. I have now reached out to a total stranger and will be exploring a prayer ministry in hopes of finding some sense of purpose in my life. I am reminded of my experience of sinking into the mud and asking for help. Remember that sign of alligators being present? Unfortunately, as we try and explore ways to get out of the pit of despair, the enemy will look for ways to stop us. But God always wins. I am learning to reach out to positive people who will support me. I'm excited to see where my life is going once I get my feet back on solid ground. I will keep you posted.

“But blessed are those who trust in the LORD and have made the LORD their hope and confidence.
They are like trees planted along a riverbank, with roots that reach deep into the water.
Such trees are not bothered by the heat or worried by long months of drought.
Their leaves stay green, and they never stop producing fruit” Jeremiah 17:7-8

Several years back ,my mother had a young palm tree growing wild in her yard. I was a single mom at the time and my yard consisted of weeds and a few shrubs. I asked my mom if I could have the tree. Upon her approval I dug it up and planted the palm in my front yard. I watered it immediately. I was so excited to have this tree grow into a majestic beauty. Every night I went outside dousing it with water. That worked well for a few months but after awhile it didn't look like it was growing. A friend from church, a landscaper by trade, came by to help with a repair. I asked him about the palm tree and how much I should water it, he told me they didn't require a lot of water. He continued, “The more you water the weaker it becomes. When the tree is dry the roots grow down into the natural spring beneath the earth looking for water. If you continuously water it the roots will stay near the top. When the roots grow deep it makes the tree stronger and it weathers the storms.” A few months later a friend was going to throw out a sprouted palm growing wild out of a coconut. I took that home too and planted it near the first palm. I made sure I didn't over water.
What I love about the above verse in Jeremiah and the palm tree experience is how God works in ways we do not understand. Like a tree's roots growing under the earth, we cannot see what God is doing. Eventually, we might see the results or the fruit of His plan. For the past three years my ministry in bearing fruit seemed to be over. I had one injury after another and felt the ravages of the storms of life. I would sit outside and watch the squirrels play and the lizards leap. At out Bible study group we were challenged to spread the word of God. To be disciples of Christ. I mentioned to my fellow Christians, how the only witness I get to give is to the squirrels and lizards. Although we had a laugh it really was disturbing. On the way home I said, “OK Lord, what do you want from me. Let me produce fruit for your glory”.
Shortly after I was on an internet chat room with other CMTers. Someone quoted a few bible verses and caused a stir in the secular group. The scripture verses were deleted from the page and the bible quoter resigned from the group. It really disturbed me. I contacted the administrator of the page and explained how someone posting “What type of shoe helps you” to “What bible verse gives you hope” should be one and the same. After all are we not doing this to help encourage one another?” After a few conversations, and her helpful advise, shortly after Easter weekend of 2014 our CMT Fellowship page was born. We are now over 75 members and it is a great place to share our experience, hopes, prayers, inspirations and Bible verses. I than continued to spread the word of hope through this blog. Just this last month for the first time in 50 years I shared my story and faith in having CMT.

I didn't see all God was doing to prepare the way. I felt at times barren and forsaken. However, I didn't give up and just kept pushing deeper. I allowed my roots to grow deep into my faith and found the spring of living water. That palm tree that grew out of a coconut, well it grew into a majestic beauty and gave off numerous coconuts. Both trees continue to grow through the droughts, heat and storms. I too am growing stronger in my faith during this difficult time in m life. I know more fruit will be produced as long as I remain in our Lord. (Romans 15:5).

Healing From The Hand Of Friendship

After sharing about my experience with how my whining has caused uncertainty with others I want to share of the ones who have stood by me in this battle. There's a story in Exodus about the Israelites fighting to conquer the land God promised them. As long as Moses held up his arms the Israelite were winning. As soon as He let his arms down they were pounded on by the enemy. So Moses brother, Aaron, and his friend, Hur, got a rock for Moses to sit on and then on each side of Moses they stood and held his arms up. (Exodus 17:12). The battle was won and they went into the land to conquer it. Like I stated previously God is all about relationships. He could of given victory to the Iraealites without Aaron, Hur or Moses. God chose to make a point in that we need each other in order to conquer the battle.  We need to put on the full armor of God (Ephesians 6:13) and  pray for each other without stopping (18). I love that, for some, praying for me has become an action, not just words. To all my friends who have treated me to lunch, coffee, parks, and visits, your time was as healing to me as Aaron and Hur were to Moses. To be accepted, the good, the bad and the ugly is a gift.

Life is busy for many. In today's economy just about everyone has to work. Those who don't are usually busy caring for children, grandchildren or family members. Today's mom's and dad's  feel exhausted in taxiing their loved ones to sporting events, doctor's, dentists ect. Those who retire are now active in ministries at church. We live in a needy society. I don't like adding to that need. If I had a choice I would rather give 100% than be on the receiving end. It has been humbling and lonely. Yet when one of my friends anoint me with their hand of friendship I am so elated. A few weeks back a busy friend called and invited me to dinner. She had a free evening and we went for pizza. What a fun time. We laughed, complained and prayed. It was soothing lotion on a chapped heart. Other friends invited me for coffee, another joyful experience. For me they are being Jesus with skin on.

Don't mistake someone being married as not being lonely. When I was a single mom many friends from church were there in my times of need. I believe the deceit we tell ourselves is that she has a husband or her children live near by. Let the Holy Spirit speak into your heart.  There have been times when our fridge has been empty and I would receive a “word” from someone who believed God wanted them to tell me something. I already know what God's word says.  I am forever grateful to the great group of friends who have given  food, money and treated me to adventures.  In my mind they are the true disciples of Christ. You guys who are my Aaron and Hur have been my encourager to write. Your validation has prompted me to share my story in hopes of teaching what it is like to be one of His chosen ones in need.

With the love and support of family and friends many hurting people overcame their hardships and shined brightly for our Lord. God does not expect us to go through our battles alone. He created us  for fellowship.  “How good and pleasant it is when God's people live together in unity! It is like precious oil poured on the head, running down on the beard, running down on Aaron's beard, down on the collar of his robe. It is as if the dew of Hermon were falling on Mount Zion. For there the LORD bestows his blessing, even life forevermore. Psalm 133:1-3” Simply put it is an anointing.

Thanks to those who gave through my story, we have collected $200.00 to go towards a cure for CMT. Because of your generosity the path may not be as long before a cure can be found. If anyone gave and I have not contacted you by Private Message would you contact me at, ellene55@embarqmail.com     and allow me to send you a thank you. I do appreciate everyone's comments, prayers and support. My son,  Joel will give a tally of what was raised through the shark tournament. Hugs You can still give if you feel led to at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge 

Sept 30 My CMT Journey continues.....

I didn't challenge anyone to an ice bucket challenge and the only suffering endured was reading my lengthy posts. “Thank You for supporting, and praying for a cure for Joel, my sister Patty, myself and all the other CMT sufferers”. My motives are threefold in sharing my journey with you this month. First and foremost is to encourage you if your prayers are not answered in your favor to not loose hope. It is so easy to want to give up on your faith. You may think if their really is a God why does He allow so much suffering in this world. To that I say, He is always with you. We are the ones who turn our backs on Him. He never promised life would be easy and He never promised He would grant our every wish. What He does promise is “Never will I leave you and never will I forsake you.” Deuteronomy 31:6. He sent us His son, Jesus Christ, to comfort us and His spirit to encourage us. I could never endure the hardships without my faith and hopes in my Lord. “What we suffer now is nothing compared to the glory we will receive later” Romans 8:18. Next is to get the awareness out there of what CMT is and how it affects us. Lastly to show what is being done for a cure and to request donations to expedite the process. To end my final chapter I have added the latest updates in research.

The seven stages outlined below provide more detail about the strategy and progress in drug development for CMT1A. Stages 1-5 have been completed or are ongoing, and stages 6 and 7 will begin soon after the completion of stage 5.

1. Develop Laboratory Models:The fact that the genetic mutations causing CMT can be replicated in laboratory models has opened an extraordinary window of opportunity to develop treatments for CMT1A.
2 Build Cellular Assays:With CMTA support, a series of drug-screening assays have been developed which are being used to identify and prioritize compounds that can reduce the high level of the PMP22 gene that causes CMT1A.

3. Screen the Cellular Assays with Different Pharmaceuticals:

4. Test the Candidate Drug Compounds in Laboratory Models:The CMTA has engaged a contract research organization, Psychogenics, to facilitate and expand drug testing in laboratory models of CMT1A. This capability expedites our ability to test several versions of a given drug type. It also helps us to collaborate with a variety of pharmaceutical partners that have candidate drugs to test so that we can test many candidates in parallel rather than one at a time. The laboratory models of CMT1A are being assessed to determine if the compounds change the grip strength, balance or sensory function in the model. These results will help us determine which compounds might improve common CMT symptoms while improving the underlying problems in peripheral nerves.

5. Test the Compounds for Dosage, Toxicity and Viability:For the four compounds identified in previous years, Dr. Michael Shy and the CMTA Centers of Excellence are conducting safety and toxicity tests for the most viable candidates. This is a major step required for eventual translation of these findings into clinical trials for CMT1A patients.
6. Conduct Pre-clinical Phase 1 Human Trials:A small group of strong, healthy people without CMT will take the dose of the compounds to test for human side effects and toxicity.
7. Conduct Pre-clinical Phase 2 Trials:Through the CMT Centers of Excellence, small groups of people with CMT1A will engage in pharmaceutical trials to understand the positive impact the drug will have on CMT. Once these trials are concluded and the FDA has approved the use of the drug, it can be delivered to the market, accessible to everyone with CMT1A.

I will occasionally update my blog so check back once in awhile if your curious.. I am truly humbled by the out pouring of love, encouragement and kindness you bestowed upon my postings. Thank you seems such a delicate word to end this post. But from the bottom of my heart I am forever grateful to you all. I love you and I pray God will bless you! P.S. If anyone gave towards research If you feel comfortable, could you let me know how much you contributed. I would like to tally up how much was given this month and post tomorrow. Hugs
If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDAhttp://www2.mda.org/goto/CMTChallenge

Pretty Patty

Joel and I

Sept 29 My CMT Journey continues.....

One night while thinking of ways to get the awareness of CMT out there, I felt a nudge to tell my story. I am not one who comfortably shares about being disabled. I always wear pants to cover my leg braces and never posted pictures of my hands curled. Sharing my CMT journey with you has been both heart wrenching and healing. I made myself transparent in hopes that it would bring awareness and DONATIONS for researching a cure. I know of many disabled friends are judged because they don't look disabled or some days they can walk and on other days need a wheelchair. There are babies diagnosed at birth with CMT, others diagnosed as children. Some don't show symptoms until later in life as adults. Some can run and some can't even walk. Some of us use walkers or wheelchairs. Most wear leg braces. Some have breathing problems which causes life threatening conditions, “CMT affects the phrenic nerve (which innervates the diaphragm) and the recurrent laryngeal nerve (which innervates the larynx)” (CMTA Fact sheet Breathing problems). Some can lift weights. There are those who live a very functional life and unfortunately others who die way to young. Some work while others are on disability. This disease affects each of us differently. But we all share a common bond in that a cure be found soon and progression to stop." What is faith? It is the confident assurance in what we hope for is going to happen. It is the evidence of things we can not see yet." Hebrews 11:1 Researching a cure has come far in the last fifty years since my diagnosis, but we still have so much further to go. I pray the day will come soon that the use of leg braces as the only treatment would be old school. I believe researchers will be able to find a drug that helps stop the progression and cure or prevent our children and future generations of having CMT. If I didn't see any signs of hope for a cure I would not have shared my story or worked hard at finding funds to quicken the process. . “As of now there is no cure. Drug discovery and development is never easy, but the CMTA STAR program has identified new approaches and even new opportunities and partners, and is on the verge of having approved drugs that could be appropriate for use in laboratory models of CMT1A and clinical trials for individuals with CMT”. (CMTA Charcot-Marie-Tooth Association - STAR - The CMTA Strategy to Accelerate Research Neuromuscular Medicine) Please take the time to view this video and hear of others stories and the breakthroughs with CMT? Star Charcot Marie Tooth disease video http://youtu.be/7Ow7f_UFX6o If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge

Casting and measuring
feet for braces

Finished product all
 taped and ready to
ship out

My Braces