Sunday, December 28, 2014

Writers that inspire me

Feeling low energy but still so inspired by a book I have been reading, "Life Disrupted" by Laurie Edwards that I am going to quote her book here instead of writing a longer post myself. Most of these thoughts are not new to us but it is somehow comforting and empowering to have them written down. Laurie's writing really speaks to chronic illness situations and solutions. I am so blessed to have found her book by way of her blog. It was one of those nights my fibromyalgia was in a frenzy and even though I was exhausted there was no sleep to be had and I googled chronic illness blogs hoping to find one and actually found a ton. When I read her words I was captured and instantly became a fan. Now that I have her first book I am reading it slowly to soak it in and hopefully cement in to my experience. It is my pleasure to share more of it here with you.
  • "The line to adapting to physical problems and ignoring them is precariously thin.- 
  • "In our sickest moments we need medicine far more than it need us, and challenging that institution when we're most vulnerable can be extremely difficult. - mustering the confidence to say no to a line of thinking that isn't helpful of healthful."
  • "a good patient is an empowered one."
  • "A doctor doesn't or shouldn't view what we say as a laundry list of complaints but as necessary tools to guide him or her toward better treatment"
  • "Her (doctor) job is to lay out your options and her recommendations. Your Job is to decide which of those is right for you".
  • "The more you suffer the more you are able to recognize suffering in others."
  • "We're not better people because we can empathize with someone's struggle-However if we able to channel accumulated patient experiences in a way that somehow makes a positive impact on someone else in a similar situation, then there is something redemptive about our suffering. "Paraphrasing)

This is what my blog is about. Helping others to tread the journey marked by our illness. Also to share my faith as a strengthener and definer of how the journey plays out for me. I hope someone finds it encouraging. Please let me know if you visit this page because I need encouragement also. Thank you!

I would also like to share a great list by "A new kind of normal " blog author Jamee

10 Things I learned from chronic illness

Jamee shares my faith and lifts me with her words.


Lord I pray that anyone in need of your love and encouragement would find it in your word or perhaps here or with any of the writings represented here. Guide my words to be helpful and bind the enemy from interfering in any way. I love you more than I can express and I long to serve you father, help me. Amen



Monday, December 22, 2014

Merry Christmas everyone!!!!!!!!!!!


After several tests and doctor visits I have a few new diagnosis to add to my list- Arthritis in several joints and interstitial cystitis which explains why I feel like I have a UTI when I don't. Today I am feeling great and grateful to have a strong team of doctors caring for me. My elbow is healing faster than expected and I am grateful for that. I am a fiercely independent person combined with a progressive diseases - CMT and others it becomes a balancing act of resilience, strength, surrender and acceptance. I am not a negative person but I am finding the need to become more realistic. I hope and pray that my husband can stick with me through this as I fight every inch of the way. Sometimes we look at using aids such as walkers or chairs as losing the battle but if they are keeping us mobile and independent ya! I need to keep that kind of attitude as I continue on this journey. When I do get a scooter I will be happy.

Maybe it's the season but I am feeling much more light hearted and hopeful. I usually am like that until my plate just gets too full of medical issues or pain. One Nurse Practitioner I used to have told me "you can handle it just get a bigger plate!".

As we celebrate the season reach out to those that may be alone or without family this year. My mother always included so many people in our holidays which I hope passed down to my kids and I am thinking warm thoughts of her even now. I miss her at the holidays the most I think. I am glad she pushed me in the ways that she did and tried to always make me feel special not broken. I am rambling because my head fills with so many memories this time of year. Most of them are precious. Health and happiness to all of you this Christmas!


Lord we celebrate you and all of your glory. Instill in each of us the desire to bring peace in to the world. Let others see something different in us and let that be you. Keep our eyes open to someone who might need a kind word or something more. In this season of giving let us give you Lord in our actions and attitudes and in the way we speak to others. Lord let your light shine brightly. Amen!

Saturday, December 13, 2014

Moses

YES! Yes! Yes! The movie Exodus is spectacular and I connected with Moses shaking his fist at God questioning Him. I understand that and because of doing it my faith has deepened so much. He can handle your emotions He created them!

"This blog will focus on faith, depression, surviving and hope. I talk to God openly and for some it may seem irreverent or disrespectful but He already knows your thoughts so why not speak them out loud! I do know that God is good and my faith holds my life together. "-From my profile.


I cried on the passover scene so grateful to be saved by the blood of the Lamb Jesus Christ. This movie is an amazing account of Moses and closer to bible. I strongly encourage you to see this in the theater.

Lord I am so full of love and appreciation for you and your sacrifice. You alone have freed us from bondage and set our spirits free. I am in awe of the immensity of your love for us! Praise be to God!
Help others to see this film and be inspired by you Lord. Let them see the connection from the old testament and the new. Let others see that you are the Lamb and your blood shed for us is freedom. 



Let them desire a longing to be free and to seek you Jesus.Amen

Wednesday, December 10, 2014

Overwhelmed - a familiar place

I am feeling a bit overwhelmed this week from health issues and I am beginning to wonder if I will ever be healthy again? I was thinking about the condition I was in 7 years ago when I stopped working as a nurse so that I would not be as tired and to get healthier. Neither of those 2 things have happened. In fact it I would love to be in the condition I was in 7 years ago and as badly as I feel now I wonder will I be saying the same thing in another 7 years? Will I wish then to be as healthy/unhealthy as I am now? It is hard for me to believe being much more unhealthy than I am now is livable. I know there are many of you you who suffer from all kinds of ailments and chronic disease's that can attest to having the same thoughts. I am not trying be a downer just stating how I feel today.

My only hope comes from knowing my destiny is in Gods hands and however long or no matter how much suffering I have on this earth I know I will be in a new body and well in Heaven.

There is a treatment for CMT coming soon which will stop the progression. I used to say if I never got worse than "this" I would be happy and I meant it. I do not feel that way anymore. If it were only CMT I had to deal with I would be stronger. It is not death that scares me I will welcome it when it comes, it is suffering that terrifies me. I am afraid of how much more pain I can endure. I will continue to fight all of the ailments my body contains but only out of respect for a Father who I love and cherish more than anything. I want to believe in healing for myself I know it is possible but I guess I have given up hope. Instead it seems like God has purpose in my suffering, perhaps writing or encouraging others to believe. So know that as we prepare to celebrate the birth of our savior who suffered more than we can imagine to set our souls free, know that He loves you undeniably.

Tomorrow night my friend Bernadette will be making herself vulnerable again attending a showing of the documentary "Bernadette" based on her life with CMT. Her passion to change lives, get people properly diagnosed and spread knowledge of CMT drives her. Bernadette has symptoms of CMT much more progressed than mine and I am humbled by her.


Lord this has been a tough week and when the pain is intolerable it scares me. I try to remember it will pass and be a memory but I am also anxious of it starting again. Only you can hold me through this and keep me from the darkness that threatens my promise to you. Only you can answer my prayers and take any of this from me I am at your mercy. You know more than I how much I can take. As I read Job and his struggle I connect. I want your word to live inside me and guide me through every step and yet I hesitate to finish the book because I am afraid of the ending but you Lord are my ending. Rest, less pain and more faith I pray for these. I also pray that you Lord bring the right people to the movie viewing to help Bernadette obtain her goals and that you would give her energy and health to endure the evening.

This song give me courage I hope it does you also. Keep holding on if your here there is purpose and if you are willing God will use you.

Friday, December 5, 2014

Validation?

So, is it validation when your therapist is astounded that you are actually dealing with so much or just comical? I know it is her job to support me and to show compassion but she is genuinely shocked. When I told her this whole arm injury experience pales in compassion to the urinary issues she actually had tears. Sometimes I do minimize my challenges because I have had so many and if I focus too long on how much I have to deal with, it can be overwhelming. I am pretty tired of this brace because it is so heavy and uncomfortable and as the clock would attest hard to sleep in. Writing at least gives purpose to lost sleep.

I have been following a blog by Laurie Edwards and then ordered her book "Life Disrupted" and it has been such a blessing for me right now. It is empowering and insightful for anyone with chronic illness. I can't recommend it highly enough. She lays out the diagnostic process and how frustrating it can be as well as gives incredible ideas on dealing with the medical community. I have been doing this for 50 years and still learned and reinforced some very important principles on listening to your own intuition about your body and your condition.


I left a Physical therapy appointment recently feeling unheard and categorized. It was incredibly frustrating but I was able to feel confident in my decision not to go back to that therapist because she dismissed my input and concerns. I am the expert when it comes to my body and Laurie emphasizes this in her book.

Someone asked why I end each post in prayer - well prayer is the most important part!


My thoughts or writing about my emotions is irrelevant without my relationship with my Savior and sharing His Grace in my life. It is my desire to share that with anyone who comes across this page. Prayer is a powerful thing and I have had many miracles and answered prayer in my life. In 1993 I was in a car accident and herniated two discs in my neck. The pain became all consuming and for years I had severe muscle spasms that would land me in bed. I had a hard time taking care of my kids much less myself. The pain and spasms would yield for awhile and then return just as awful. All of the pain and difficulty was on top of my chronic CMT In 2003 I reached a breaking point and even though my faith in God was strong I was broken and didn't feel I could continue. I called a sweet friend of mine in tears asking for prayer and it helped to calm me down. She specifically prayed for healing and a permanent release from the pain. The next day on the way to a doctor appointment I was in another car accident but this time within a week I was free from pain and muscle spasms. My chiropractor said it was the adjustment he had never been able to do on me because my neck was so tight. No one else in the accident was hurt but my 2001 car was totaled. That pain has never returned.

Father I pray for my CMT
family tonight and for all of their various burdens, let them know they are not alone and that you are there to comfort them. For those with fibromyalgia, chronic pain, cancer, any chronic disease that someone is struggling with provide rest and healing. Your power is so great and your mercy never ending let if flow over anyone reading this post and I pray the difference in their day would clearly be from you.  Amen

Tuesday, November 18, 2014

Can do list- interrupted


Cant’s!
I am so sick of cant’s! Can’t do this can’t do that! I want a long list of things I Can do! The most recent can’t came yesterday when my hubs and I went to check out a beach where a group called Beach Dance meets. Moving, dancing on the sand is so much safer for me because the sand is forgiving both with movement and if I fall. The idea of spending an hour dancing with others and enjoying time on the beach was so enticing for me. Well Boo! The beach is inaccessible to me. It involves a ¼ mile hike over uneven ground and around lava boulders, which will shred you if you fall on them. On a positive note if you come visit me I will tell you where this beach is!
So I am on to the Can Do list. Actually I am making it in to a Want To Do list because that is more empowering. Not a bucket list but things I can do on a regular basis. I could have completed the hike yesterday against my husbands advice and probably been injured maybe even needed a helicopter evacuation to get me out of there but I chose not to do that so it becomes my choice. This world is hard enough with CMT and some of the other issues I have going on. I want to make it easier. If you have CMT and wear AFO’s add to my list things you think I could do. We are stronger together and we Can Do it!
Tomorrow we are going on the Hana road but only as far as the lava tubes. I will walk it as far as I can and chose to!
                                                       Things I Want to do/ Can Do
Dance on an accessible beach maybe even invite others to join you
Drive in the car to spectacular scenery
Swim and water exercise
Be driven to a beach and watch the waves pound
Volunteer
Spot whales
Write

I started this post 2 weeks ago and last week I fell and dislocated my elbow ;-[. Not a happy girl. This is my 4th major fall in 6 months, think I am looking at getting a scooter sooner than I thought. The can’t list is even longer now but the idea is a good one so I will get back to it, soon.
Lord you are my comfort in difficulty; I praise you for keeping the pain level low. LORD sometimes these added challenges would lead me to doubt you but I feel such peace right now. I need your encouragement to get through the added challenges from not using my arm. Protect me from the lies of the enemy and let others see your never-ending grace in me. Amen

Thursday, November 6, 2014

Admitting depression

Another comedian admits to depression. Wayne Brady gave an interview and really opened up. It just goes to show how many people hide their depression and even enough to work making other people laugh. Sad. I certainly put on my smile for others but I don't have to do it to make a living. I always found it easier to feel "up" when I worked because I was focusing on other people.The more celebrities that share openly the better it will be for all of us. Depression can be part of a normal  grieving process with any loss, it can be biological or the affect of PTSD. You can't just decide to be happy if you have clinical depression. You have to work at it through therapy, educating yourself, lifestyle, diet and sometimes pharmaceutical aid. I have a brain that was permanently affected by severe trauma and I have learned to look at the meds as a positive and be grateful for them. An earlier post PTSD Facebook Page talks about how they can now see on an MRI the damage trauma does on the brain. Even if I didn't have PTSD because of my Chronic disease I continually am dealing with loss and physical pain and that brings depression. If you are struggling please take a step towards healing and make a call to a doctor who can help you get started. Tell the people in your life and come to terms with it yourself. It may be something totally out of your control and learning that would be helpful. If your body is out of balance with hormones or the brain chemicals needed for happiness meds can help but please don't stop there.  When I have a really good day I think "oh this is great the depression is gone"! Slowly it inches it's way back in and I am I feel defeated once again. Claiming scripture and prayer are some of my tools and they have made the difference between life and death a few times. There is hope in the treatment of depression and hope changes everything.

Lord I am so broken sometimes and I feel like it is just too hard to keep up the work it takes to keep my life together. I pray for strength and that I would be patient with myself. I also pray for more acceptance as my abilities deteriorate slowly but more noticeably now. I want to trust that no matter what you will be with me and I will be alright. Thank you Father that you are in charge and that you love me. Help others perhaps even someone reading this page to feel your love and guide them to healing. Help us to feel the peace that comes only from you, in the midst of the storm. Amen

Sunday, November 2, 2014

Chronic Illness and faith


The precise meaning of chronic is "persisting for a long time", and it is used chiefly of illnesses or other problems.
If you are chronically ill chances are you are operating at max capacity every day. I know I am and have been for the last 26 years. I feel like the child’s game where you try to fill the bucket with out it spilling over and when it does the game is done. I feel like if I get one more thing medically to deal with – game over. Today I had to yell at a nurse over the phone, to get the help I needed. This should never happen! One of the reasons I went in to nursing was to make a difference, to actually care about and help people. Patch Adams one of my all time favorite movies touches on this and is an example of what I am talking about. When I worked at a hospital a patient with nausea and vomiting requested lime Jell-O and his nurse did not order it so I asked why and she said he would just vomit it back up. Since there was no medical reason he couldn’t have the Jell-O I got it for him. His appreciation was worth the look I got from the other nurse. The patient told me when he has nausea lime Jell-O helps. Sometimes listening is as important as action.
If the only thing I had to deal with was one UTI then I would not have yelled at the nurse but when it is the 10th UTI this year and she treats me like I am asking for too much then, she deserves it. Sometimes I wish working in health care did not pay as well as it did because then you would have many more doctors and nurses who were doing it for the right reasons. Today is one of those days I feel like I could not handle one more thing and yet here I am so I turn it over to God and ask for his strength and healing because the truth is I can’t do it without Him. I continue to pray for healing even though I doubt it will happen for me. I do believe in miracles and I have seen them happen it just doesn’t seem to be my destiny.

Lord help me to cope with all life brings and give me your strength to sustain any difficulty. Father I long to be used by you and to show the love of Jesus through my faith. You alone are God and I find comfort on your word. Amen

Sunday, October 26, 2014

Changes

After some input and prayer I have decided to split my blog in to two different blogs. This blog will continue to deal with chronic illness and faith and my other blog will be focused on PTSD and healing. The link is http://healingtakesalifetime.blogspot.com/ Thank you- Mauigirl

Wednesday, October 1, 2014

Kidneys who needs them?


Your kidneys are failing????????????

I have had UTI‘s  aka urinary tract infections, since I was 7. I have been worked over by specialists, had 2 bladder surgeries, scoped twice, been asked the same mundane questions repeatedly, taken meds that as it turns out probably made my CMT worse and now my kidneys are failing? What did I do? How can this be happening? Ok you know what, I don’t even care anymore. Stop this ride I want to get off. I am not a martyr! I am so tired and can’t fight any more battles just to hold on to a life that is so incredibly difficult. Seriously maybe it’s time.
Poof! Your gone, can’t take it back.
Ah but I can. My God is amazing and he is full of compassion and mercy. He is big enough to hear my prayers, my complaints, my doubt, and love me anyway. I talk to God like I talk to most other people and he hears me. I asked him to heal me if he could make my life worth living – physically speaking. Lets re cap the last few months
Respiratory illness
Lice
Sprained ankle fall- CMT
Migraine headaches- debilitating
Eye infection – vision affected, blind for 2 weeks and still not clear after 5 weeks
2 more falls – CMT- pain
UTI ongoing
IV meds
Diabetes insipidous
so, now I hope you can understand my attitude. It doesn’t matter because I believe God does and he has compassion for me. When I pray I worship God and I thank him for all of the blessings and for his grace. I also ask for his help in my struggles, I tell him when I have had enough, and I have. It is not at all like being suicidal or from a place of depression. It is just about surrendering the war and asking for respite.
I am going to give my life a bit of an over haul and yes I will go to see the Urologist again, but I am also believing that God has heard my cries and agreed that it is enough. So many times people look for “the purpose” in suffering. Maybe there is no redeemable purpose. Maybe suffering is just a consequence of illness. All of the hyperbole about it making you stronger feels like bunk to me, it may allow you to see strength you were unaware of but it wears on you. God is a loving God and he did not create us to suffer. We are meant to be in relationship with him and to strive to live a life worthy of his grace. All of that summed up means sometimes suffering is just part of life and some of us have more than our share if that’s possible.
Selfishly I can say as a nurse I made a sizable living at helping people who were suffering. More importantly my life had meaning. I was using my gifts in a profession people admire. I was holding the hand of the dying and aiding the family members. I was relieving people from their pain. I felt good about myself.

So maybe that is the reason for suffering, helping each other and living compassionate lives so that we can know God in a deeper way, and we can experience miracles and healing.

I am grateful for my relationship with my creator and for the ability to be real with him. He knows my heart and my thoughts so why not speak them out loud or, write them down! This is my blog read it or not. I am writing it to express myself and if it helps you or provokes you in to deeper thought that is awesome, if not find someplace that does. Life is too short to live it without passion!

Where the name comes from? Drs. Charcot, Marie and Tooth

Jean-Martin Charcot

Charcot's primary focus was neurology. He named and was the first to describe multiple sclerosis.[2][11] Summarizing previous reports and adding his own clinical and pathological observations, Charcot called the disease sclerose en plaques. The three signs of Multiple sclerosis now known as Charcot's triad 1 are nystagmus, intention tremor, and telegraphic speech, though these are not unique to MS. Charcot also observed cognition changes, describing his patients as having a "marked enfeeblement of the memory" and "conceptions that formed slowly". He was also the first to describe a disorder known as Charcot joint or Charcot arthropathy, a degeneration of joint surfaces resulting from loss of proprioception. He researched the functions of different parts of the brain and the role of arteries in cerebral hemorrhage.[2]
Charcot was among the first to describe Charcot-Marie-Tooth disease (CMT). The announcement was made simultaneously with Pierre Marie of France (his resident) and Howard Henry Tooth of England. The disease is also sometimes called peroneal muscular atrophy.[12]
Charcot's studies between 1868 and 1881 were a landmark in the understanding of Parkinson's disease.[13] Among other advances he made the distinction between rigidity, weakness and bradykinesia.[13] He also led the disease formerly named paralysis agitans (shaking palsy) to be renamed after James Parkinson.[13] Charcot received the first European professional chair of clinical diseases for the nervous system in 1882.[14]
for more info go to wikipedia
Jean Charcot

Thursday, September 25, 2014

Letter

The following is a letter  I wrote to my family about 3 weeks ago. I genuinely just wanted to be real with them and didn't want them to be taken off guard if my condition worsened. Now they are all upset with me so I guess it wasn't a good idea? I find myself writing to the unknown and countless souls in the world who may, like me, just need to talk. Also to those who like me, believe in a God the creator with whom I feel confidant can handle my anger with love and grace.

Friends and family
I have been through a major health crisis this last week and I am now embarrassed to say was hoping I would not get better. I am tired and really fed up with this poor excuse of a body God gave me. I have tried to hold on for so many reasons for so long but it just keeps getting harder. I have been a little hopeless and that leads down a deep dark hole for me. Then my kidneys started to fail and I thought this really could be it. I prayed that God would heal me. Now today I feel like myself, we went for a walk on the beach, and I am making plans and not feeling sorry for myself. It is always true that life is easier when you are 100% but I will never be 100% not as most of you would measure it, and the fact that I do as well as I do most of the time only being 50% should allow me some room to be pissed off at God for this body and fed up with the medical world! I have lived a long and difficult life not just because of CMT, for so many other reasons. If it is to be over then lets get on with it but if it is God's will for me to stick around then he needs to lighten my load and allow me to get out of bed. Maybe some of you find it arrogant or unsettling to see how I talk to God others would find it liberating. I am praying I stay healthy for longer than a few days and that I am able to enjoy however much life I have left whether that be weeks or years. I also hope that I can serve God in that time. One of the things I am going to do is write (computer willing) a new blog and be brutally honest. If I am going to stay here I want to make it count for something. I am not looking for your pity when God does choose to take me he will be showing me grace and mercy and that’s a good thing. Just needed you to know why I have been so down. I love you all very much. Thanks.

Wednesday, September 24, 2014







Also from Plumb
Lord I'm ready now

Sleep

It's the nights that are hardest for me. My husband is asleep and I am chicken to go to the beach by myself and tv just makes matters worse. I just want to sleep. The CPAP machine seems to help when I can wear it -(trauma related Healing takes a lifetime). Why can't I feel as tired at 9pm as I feel at 9am? My nerves are on fire and my muscles ache. I worry about what tomorrow will bring. Lord I know this is not the life you have for me and sometimes that makes it even more frustrating. I am tired of this battle. What must I do to be past it? Have mercy on my mind and remove this burden or at least give me rest. You are an all powerful God and my hope rests in your grace and goodness. Help me to trust you more Lord, in all things. To trust your timing, your reasons, and your promises. Please take this loneliness away that the enemy attempts to confuse me with. I am not alone as long as I am in your arms and blessed by your goodness. Lord help me to separate emotions and reality and to know that I know, that I know, you are in control. Bind the enemy from my mind tonight and give me peace oh God. Respite and time away from the battle. Peace.

Saturday, September 20, 2014

Suicide is not an option

It never ceases to fascinate me how God works. No sooner have I started this blog than have I been in conversation with people who are suffering from depression or chronic illness. “We need a voice, someone to speak the truth”, a reader told me.
Please know I am not a professional mental health worker and I am only sharing my thoughts and experiences. You should always contact a doctor or a therapist if you are feeling like taking your own life.
Dr. Oz said on his show today that telling someone is the most important thing. Even if you are admitted to a healthcare facility it is possible that during that time your perception of life will change enough to give you hope and hope changes everything.
I also want to introduce the idea to you the idea that taking your life may result in a separation from God forever and that to me is Hell. The movie “What dreams may come” ironically with Robin Williams, in part explores this theory.There may be a space between life and death where we can repent of our sin of trying to play God or giving in to desperation but what if there isn't? The thought of being forever in that darkness rather than relieved from it is enough to keep me from taking my life.

Find something that does that for you a life preserver to keep you afloat until the deep darkness passes, something that is not dependent on a friend or loved ones words or actions because that is too much responsibility for anyone. Find a scripture, music, food, place, or maybe even a “timeout” like a weekend in a scrumptious spa because isn’t that part of what we are looking for, a break from our life and our daily selves? A break from pretending to be ok might be all we need. It can be a regular session with a therapist or support group. If those things are not working look outside of your normal life and find something you haven’t tried yet.

Get through the next hour, then the next 6 and then 6 more it may be all it takes to get past the dark overwhelming cloud.


 I do find volunteering or taking classes helps give me enough of a boost to feel inspired. If nothing else pray- talk to God. Cry out your heartache and ask for healing, forgiveness, reconciliation or closure. Whatever the source of your darkness, know that He loves you and His love is enough. During the last four months every illness or health issue I have had has prevented me from leaving the house, kept me in bed much of the time, which has been incredibly frustrating and discouraging. In that time I kept hearing God’s voice (along with my niece’s) “write”. So here I am writing in hopes of helping even just one other person, perhaps you. In reading this you have helped me, thank you.

Lord I promise to rely on you when I feel I can't go on and to have enough faith that the moment of darkness I may be feeling will pass. I promise to wait for your leading and work at being healthy until you call me home. I want to serve you and I am willing. Lord I want to trust you and your word in the hardest struggles please help me. Amen

 


Don't make permanent decisions based on temporary feelings........... hang on! 

 

 

Beautiful People


Monday, September 15, 2014

CMT Time to stop hiding it


September is Charcot-Marie-Tooth awareness month and it has been a part of what prompted this blog. "Time to tell the world about CMT" from the movie Bernadette.
A documentary has been made about a beautiful friend of mine Bernadette Scarduzio, it shows her life and her struggles with CMT- Charcot Marie Tooth the same disease that I have. Please view this link and feel free to pass it on. The movie is simply called Bernadette and can be found on Hulu or Amazon.

The second clip talks about it being a family secret because for generations families have just tried to deal with CMT and not talk about it to each other.
This happened in my family. My father did not know he had it until I was diagnosed because the range of symptoms can go from mild to severe at any given age. My father and I never talked about CMT. Up until 4 years ago I had not really talked to my kids about CMT. I did suggest that they get the blood test to verify whether or not they have it. Now I am talking to anyone that will listen. https://www.youtube.com/watch?v=TCRbIaOGTAw

It's time to tell the world about CMT. I think we don't like to acknowledge it affects us. It is denial in it's best form. It is how we push ourselves and stay on our feet as long as possible. It is time to stop hiding CMT and be open and inform people. The more people that know the more likely a cure! If you have CMT please challenge yourself to share it with someone. Most likely they are already wondering what's wrong with you. It is freeing to share it and most people are interested. Share the clips and spread the word. 

Sunday, September 14, 2014

JOB 6:2-3

If my misery could be weighed and my troubles be put on the scales, they would outweigh the sands of the sea