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


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


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