Sept 3 My CMT Journey continues...

The NYC doctors recommended I go to a specialist out on Long Island. So mom made an appointment at St Charles Hospital in Pt Jefferson about a 45 minute ride from our home in Lindenhurst. The usual poking and prodding. “Lift you foot, hold it don't let me push down.”From the physician examining me. In the most common kinds of Charcot-Marie-Tooth disease or CMT, symptoms may include; foot deformity and foot drop (inability to hold foot horizontal). (CMTA What is CMT). When the doctor consulted my mom, he mentioned about it being hereditary. CMT, is a group of inherited disorders that affect the peripheral nerves, which are the nerves outside the brain and spinal cord. The most common forms of CMT are passed down from one generation to the next, meaning that it is dominantly inherited. My dad was the one who I inherited CMT from. I was around 11 when I first visited St Charles Hospital. To be continued.....If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge I have also started a blog at http://www.couragetobelievenow.blogspot.com

My Dad

Me at age 11

Sept 2

My mother took me to many doctors who were unable to determine what was going on. I went to a specialist in NY City and had several nerve tests done where tiny electrodes were shot into my body. . I remember it being very painful and I cried. I was finally diagnosed with a name for this disorder. That was the start of my journey with CMT, Charcot Marie Tooth . CMT causes weakness and numbness, usually, starting in the feet. Loss of muscle in the lower legs, leading to skinny calves; Pictured at the age of 8 you can see my legs are skinny and I was already turning my foot over. Today CMT is known world wide. It effects all gender and race. Some people don't show signs until later in life some show signs immediately at birth. For most development of CMT starts before the age of 20. To be continued.... If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or the MDA http://www2.mda.org/goto/CMTChallenge I have also started a blog at 

My Journey With CMT

Sept 1

September is CMT Awareness month and for each day I will post a little about my journey with CMT and some facts about this disorder. This is the beginning of my journey with CMT. I share this to get the knowledge out there, and ask as you follow me along on this journey you will pray for a cure. CMT affects 1 in  2,500 individuals cumulatively making it one of the most widespread inherited diseases. No treatments are available.

At the age of five, life was normal. We lived in Lindenhurst NY, and my father and mother worked hard in fixing up our new home. I was the youngest of three girls and did what other young girls did, I roller skated, climbed trees, jumped rope and did other childhood activities. However at the age of nine I started tripping and falling. I had a hard time playing jump rope, or tag. Running was becoming obsolete and I just kept tripping over my own feet. A mother knows when something is wrong and my mom knew I wasn't just clumsy. I had such poor balance and was walking over on the sides of my feet. CMT stands for Charcot-Marie-Tooth and is named after three physicians who were the first to describe it in 1886: Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth.(CMTA What is CMT). to be continued....We are so close to a cure but as with everything it takes funds. I am not challenging anyone to a bucket challenge.But please if you feel led to give any donations for researching a cure, you can give online at cmtaus.org or the MDA http://www2.mda.org/goto/CMTChallenge

age 5

age 9

Rejoice With Those who Rejoice

One of my prayers is to rejoice with others even if I'm going through a difficult time or, to weep with someone who is going through a trial I cannot understand. It is certainly not an easy task. I could never do it on my own. I need the power of the Holy Spirit to work in and through me. It is also a timely process.
God asks that we, “Be happy with those who are happy, and weep with those who weep.”(Romans 12:15)

Can I rejoice with the mom who shares of her son's bright future and awards given at school while my son was just diagnosed with a life changing disease? Can I rejoice with the couple down the block showing pictures of their vacation and sharing of their in depth love for one another while my marriage suffers? Can I rejoice with a friend who was so excited because their dog was healed when I just buried my mother? Can I rejoice with a brother in Christ on the healing of a toothache while my body continues to suffer as this disease weakens my body? Can I rejoice with others who received their life’s dream in retirement to travel at their leisure while I can barely pay my mortgage? The answer to all these questions is, Yes! Yes, accompanied with genuine love and my blessings for their happiness. “Jesus looked at them intently and said, “Humanly speaking, it is impossible. But with God everything is possible.” (Matthew 19:2). I cannot rejoice while my life is falling apart by my human nature, which is filled with pride and sin. But, I can by the Spirit of God that lives in me.

The other problem I face when going through the “Valley of weeping”, is the well meaning quotes that in reality sting more than help. I try hard not to hold it against others, but to smile and say thank you. I sometimes have to retreat from such people and just spend some quiet time with me and the Lord. When one's heart is pierced it is so important to receive God's healing, even if it means to retreat from others who have no idea how to minister.

Upon further research into the word, I find it interesting that many saints in the Bible do not always receive good health, security, a home, friends or a life of leisure. In fact life is hard. It was hard for those who followed Christ during His ministry on earth, and it is hard for those who follow Christ today. If you submit your life to the Lord with all your heart, life will come with challenges. You will not always feel his peace, nor will you always have mountain top experiences. Your life may not even feel like it make's any sense. It's at these times that we trust in the Lord. Trust Him in the valley where you work hard to survive. Trust Him in the battle field where spiritual darkness fights with your soul. Know that you are not alone. “Never will He leave you, never will He forsake you.” (Hebrews 13:5)

Each circumstance I shared above has either happened or is happening now. I can truly tell you it is not easy to be happy for others when your world is falling apart. I have to work hard in prayer for God to prevent envy, bitterness or depression to set in. When my faith and my heart is strong I can pray with boldness. In the times my faith is so low, I can't even pray. I cry out to God, “I don't know what to say any more, I don't know how to pray”. I have found it helpful to write my prayers down, or find a prayer already written that speaks of how my heart feels. I also call upon my prayer buddies to come along side me and pray with or for me.

A good friend came by the other day and prayed and cried with me. How healing that was for me. She didn't tell me God, does not give you more than you can handle, (which by the way that is not biblical). When He spoke those words in 1 Cor 10:13 He was referring to temptation. If God didn't give us more than we could handle then we wouldn't need a Savior.

I also find that I cling to God more when I'm struggling then any other time in my life. I rely on God to get up in the morning, to take a shower, walk or sometimes just breathe. I give God thanks for the little things as well as the favored answered prayer. Jesus, has become my everything. My savior, my husband, my friend, my brother, my father, my healer, my strength and my joy. He is the peace in the storm. He is the lifter of my head. He is the gentle whisper that speaks of His love for me. He is my shield from evil.

If you are looking to minister to those who are hurting, most times listening and not speaking is what is needed. In fact the less you say, the best chance you might have in reaching the broken heart.

I have always found the comment comical that people find more comfort sharing with someone inebriated then they do with “Church” people. The reason is that someone listening with impaired hearing do not know what to say and so are silent. The “Church” people love and are compassionate and want to help so they say what they believe would bring comfort. That is why we should not hold it against them as their motives are in the right place. However, unless you have walked in the same path or are trained how to minister to others I encourage the philosophy of listen, love and pray.

Life is a learning experience. We learn during the spiritual revival when our hearts are filled with joy, and we learn from the trials when our faith is low. Through it all God is walking, carrying, teaching and loving on us.

If you don't have an intimate relationship with the Lord, or just aren't sure where you stand before our God, will you take a minute to pray. “Father, I pray for the one reading this blog. I pray if they are hurting for you to comfort them. If they are confused and their faith is low and have more questions then answers then please Lord, hold them in your loving arms and let your peace fill them from head to toe. I pray for healing of body, spirit and soul. If they don't know you or are unsure of their salvation then I ask that they will accept that you died on the cross to take away their sins. For we all are sinners born into this world. Once we confess our sins we are forgiven. You took our sins with You on the cross, so we can spend eternity with our heavenly Father. You, Jesus, are the way, the truth and the life and no one can come to the Father except through You. Accept Christ as your savior, saving you from death and eternal darkness. Accept His forgiveness and commit yourself to becoming a new creation through Christ, dying to self and old sinful behavior and becoming one with the Lord. Thank you, Father for the shedding of Christ's blood.

“Holy, holy, holy is the Lord God, the Almighty — the one who always was, who is, and who is still to come.” (Rev 4:8)

AND HE SHALL LIFT YOU UP

My first cruise was quite an adventure. How thrilled I was to be able to be gifted with this wonderful experience. I struggled physically with the ability to enjoy my adventure, however I was blessed with God's mercy. I am so grateful for my family that pushed me at times with my walker. But the one experience that stands out is the powerful love and grace bestowed upon me during one of our excursions.
We arrived at Belize City and was told we would be taking a tender to port. Never having been on a cruise or a tender I had no idea what was in store for me. After waiting on a long line to get off the ship I rounded the corner to see a flight of stairs. "Oh boy," I thought, "How am I going to do this." With a cruise attendant on one side, the Lord on the other, I took one step at a time to get down the stairs. Another attendant carried my walker down for me. Sitting comfortably and safely on a bench I bowed my head and prayed Isaiah 41:10, "Do not be afraid for I am with you. Do not be dismayed for I am your God. I will strengthen you, I will help you, I will lift you up with My victorious right hand." I then looked up and started to fill up with tears. Everything is so difficult for me and my disability seems to be weakening my body. Just then a man in front of me turned around and on the back of his T-shirt was written in bold letters, "YOU SHALL BE VICTORIOUS." Chills ran down my spine. I was filled such joy. I wanted to share it with someone. Unfortunately the sound of the boat and sea made it impossible to speak. It would have to wait until later. Our trip to Belize was nice. Once again physically challenging trying to get in and out of the van that took us sight seeing. However, His words of victory inspired me. On the way back I started getting anxious. "OK God", I said, "I know you love challenges and weakness so Your power can work through me." We waited until everyone was off the tender before my family and I were ready to embark. There was a gap between the tender boat and the plank to step off. I was becoming anxious and worried I wasn't going to be able to step off. Just then one of the attendants asked if he could carry me off the tender. I said, "OK." With that he scoops me in his arms carries me off the boat and proceeds to carry me up the flight of stairs to the ship. My nephew trailed behind carrying my walker. There didn't seem to be a dry eye in place. Even my sister, who is not a believer, had tears in her eyes. I was reminded of my prayer, "He shall lift you up with His victorious right hand". With that I became overcome with emotions myself. God always comes through. I am not a martyr and if I had my desire it would be to be healed and to be stronger. Yet, I have submitted to the Lord with my disability. 2 Corinthians 12:10, "I will gladly boast of my weakness so Christ's power can work through me. Since I know it is for Christ's sake, I will be quite content with my weakness, about the insults and hardships, persecutions and calamities (difficulties), for when I am weak I shall be made strong." I don't know what impact this had on others. But, I would gladly go through it again if it makes believers out of others and God receives all glory, honor and power.
Since I have struggled with my weakness in the last two years, I have had a lot of free time on my hand. I started memorizing Bible verse's and each day I go over my verses. I wasn't sure how this was going to produce fruit. I thought I would have the opportunity to witness to others and so I continued my memorization. I didn't realize how the words would come back to bless me. In not having a bible handy to look up verese on the tender, I resorted to my memory verse of Isaiah 41:10 and was blessed beyond measure by the power of His word. We can rest safely in His arms as He lifts us up out of difficult circumstances. Be blessed!

THERE ARE NO FORMULAS

I wish there was a certain formula, Bible verse or method to use to receive answered prayer in my favor. However, that is not part of God's will. It is in faith, trust and love that we look to our Father in Heaven and rely on His answer and what He knows to be our need. Not easy, especially if we don't understand the answer.

I am sad to say my $4,000.00 leg braces did not work out. I thought for sure this was the answer to my prayers. Everything seemed to fall into place. The fundraiser, my niece had, raised the exact amount of the out of pocket expense. I prayed long and hard as did my fellow prayer warriors. I even picked out names for my braces. I was certain and faithful that the Lord's favor were all over these braces.

I went to a friends church and was prayed over by a man who has the gift of healing. I memorized Bible verses on healing and I prayed them over my legs. I praised God and thanked him for all I had. (Based on Philippians 4:6). I practiced long and hard walking in those braces, wore supportive shoes and put knee braces on both legs. I did everything I was told to do.

However, it seems God has a different plan. I am reminded by Paul's statement in 2 Corinthians 12:8-10 to be content and boast of my weakness. “Three different times I begged God to make me well again. Each time he said, ' No. But I am with you; that is all you need. My power shows up best in weak people.' Now I am glad to boast about how weak I am; I am glad to be a living demonstration of Christ's power, instead of showing off my own power and abilities. Since I know it is all for Christ’s good I am quite happy about 'the thorn', and insults and hardships, persecutions and difficulties; for when I am weak, then I am strong—the less I have, the more I depend on him.” (TLB)

I had to ask myself, why do I want to walk so bad. I know it sounds like a silly question as God created us to walk, see, hear, breathe ect. Whenever our bodies are out of sync its natural to pray as Paul did for God to remove out 'thorn'. Yet, in answering the question I asked myself, the reason was so I can continue to serve God through the different ministries I was involved in. I want to see and walk in the beauty of His creation. To be able to take my grandchildren to a park or the movies. I want be a apart of life and get off my throne and out of the house. I realize God answers prayer in the way that best serves Him. He has different jobs for each of us. He heals, as there is work to do in the healing as we give Him glory in the miracle. He doesn't heal as He has something for us to do in our difficulties that we would not be able to accomplish otherwise, and we praise Him in spite of our weakness. God is God. There are no formula's, Bible verses or methods to His will. It is important to understand that and not manipulate His word, as I did, demanding His healing.

I love my Lord, and if He has a reason beyond my understanding to allow this frail body to weaken and not get stronger, I will still praise Him. In the 2 years I have struggled I have memorized numerous Bible verses, started this blog, and found a great group that restores my hope and joy. I learned that in spite of my circumstance I can have joy if I embrace the Lord. I could be healed and miserable or I could struggle and be content. In experiencing the peace that comes from the Lord I truly have to say I am content today with my weakness. I am filled with joy and peace only by the grace of God. It is not anything I have done. For that I give God the glory.

The Throne Room of Grace

For two years I have sat on my throne waiting, hoping, praying, studying and exercising. Waiting to get stronger, hoping each therapist that came, or exercise I did, or vitamin I took would be the miracle cure. I studied and memorized scriptures that I used in prayer for my recovery.  I sat on my throne researching on my tablet for different treatments and leg braces. I made numerous phone calls to different orthotists, therapists, doctors, and clinics asking numerous questions. Family and friends who came and visited me would find me sitting on my throne. I am tired of sitting here. I  come boldly, to our Lord's Throne and  ask for His Mercy and Grace in my time of need.

MY THRONE

I am going to try a new leg brace called Phat Brace.

Praying this will enable me to walk away from my 

throne. I don't know if this will work, but I am 

praying for the Lord to guide me. A 

few of my brothers and

sisters with CMT have conflicting views.

A few say it has helped them tremendously, 

others say if you are not walking well these 

won't help. Only God will know. But I am going for it! 

Here the orthodists, Jillian, is measuring and casting my legs for the right fit. It was more involved in measuring then I thought. Jillian

charted the measurement around the ankles, length of the leg and width. Then she put tape around the finished product  

These braces are quite expensive. However 

there are braces that cost $12,000 a 

piece, which insurance won't cover. Unfortunately 

I can't afford those. These guys are $1900.00 and

insurance will pay for 80%. But God is good and is our Jehovah Jireh. The Lord provides.

           

                                                           

 My niece, Christine, felt led to have a garage sale and raise  money for me and my sister's leg braces. God  bless her.

                                                     

 She worked so hard for two weeks, collecting,        organizing,  and sacrificing her  weekends and  

 her family just so we 

 can afford our new braces. 

 God's provisions came through as all money needed  was raised. Thank you God! Thank you Christine and everyone else who helped contribute!

When we come boldly to His throne room it is with a humbled heart. The word boldly can be misleading as it is not with an arrogance of demanding God what we want or think we deserve, but rather it is with a brokenness and humbled spirit that one would approach our Lord with confidence. He is Majestic and Holy. We are to respect and revere Him.No, I could not enter His throne with a spirit of  pride telling Him to make me well, but rather one of reverence, confidence and awe. He is a safe and loving Father. We can enter His throne and pour out our hearts to Him. Psalm 62:8 "Oh my people trust in the Lord with everything, pour out your heart to Him" I have spent much time sitting on my throne as I entered His throne through worship and Prayer. So when God gives us Grace it is an undeserved gift, and His Mercy is His unfailing love that continues forever. However way God answers my prayer, I have to believe it is for His best interest for me. I pray if you are struggling with an illness, or hardship, that you will humbly go before our Gracious God and He will give you His mercy and get you through your situation with His grace. "Never will He leave you, and never will He forsake you." (Hebrews 13:5) I will keep you posted when the new braces arrive. In the meantime if you will join me in prayer for a cure.September is national CMT (Charcot Marie Tooth) month and scientists are working hard looking for a cure. If you feel led to donate you can got to CMTA website. See you in His throne room as we pray for each others needs. Hugs....