Thursday, September 25, 2014


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


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.

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