Wednesday, December 30, 2015

To keep or not to keep?

Had a very interesting experience last night. After seeing a podiatrist about my ankle we saw a man waiting for a cab with his foot wrapped and he looked discouraged. He asked us for a ride to the other medical facility 1/2 mile away, that seems so far when your unable to move yourself. It took us less than 5 minutes to take him. Turns out he was injured riding a motorcycle and it almost severed his foot. Here I am fighting for an amputation and he is fighting to save his foot. I know the issues don't line up but the thread of having a foot that doesn't work do.We both want to be pain free and as mobile as possible. I almost felt guilty for my perspective but reminded myself that he has not been dealing with this pain and foot issue for very long. Mine has been 25 years now. Not as bad as it currently is but repeated attempts to "fix" it have failed. I long for the day it is not attached to my body and other CMT'ers speak the same and are encouraging." It isn't a simple fix"my doctor said, "but it would improve your lifestyle and outlook." I am ready but I think we are probably a year from actually getting it done, we'll see.
Until then I just got an ambulation scooter and already feel 10 feet tall because I am independent! I can get the mail, ride through the complex or across the street to the beach I am freer than I have been in 7 years. I am so excited. We are also going to try steroid a injection. I am kind of like the tin man and all of mu joints need oil!

Lord thank you for your patience with me and for providing the finances to get a scooter. I am independent and stubborn and that has kept me going along with my faith in you. I pray to always know you will work things out according to your purpose.  Father I also pray for others who are struggling with loss and physical pain. It is only for a short time this life on earth and then we are free of our pysical bodies forever. Help us to hold on. Amen.

Wednesday, December 16, 2015

repost from last year-

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!

Wednesday, December 2, 2015

Kindness and compassion

Today was a genuinely rare showing of kindness and compassion from  my ortho doc here concerning my hip also my well being and quality of life. We talked for 15 mins and came up with a plan that gives me a sense of relief and tiny bit of hope. When a doctor can take just a few minutes with a person to brainstorm and answer questions it can take away so much anxiety, it has changed my whole outlook! I feel cared for, validated and important. I also felt heard which is so precious to me. This was a really great thing for me right now.

Thank you Lord for giving me the ability to discuss my situation with my doctor and for keeping me unemotional so that I could speak clearly. Thank you for bringing this doctor in to my life. I pray for your continued guidance and provision for my needs. Amen

Tuesday, November 3, 2015

Where are you Lord?

I hesitate to share this kind of day because I know there are some struggling with even more than I am. It is truth though and that is what I committed to when I started this blog. Just hear God's voice and promises in your life and believe in Him no matter what.

Where are you Lord? The road ahead is not clear and it seems uphill. I haven't the energy to travel it alone. I am not even sure I can make it with you carrying me. 
  Inner strength-blog 

I am so exhausted and feel like I am inside a fish bowl watching life go on with out me. The doctors are overwhelmed by me how can I expect them not to be? My body is screaming from the inside. Yet if I were given a choice that I could be healed of pain or of exhaustion it would hands down be exhaustion. I can ignore the pain better if I am up and about or can I? I have persevered through all kinds of pain my whole life. Lord do I have to choose? Can it be both?

I look to you- Whitney Houston

I keep focusing on heaven. Is that a good thing? Am I missing something you have for me here? Or am I just missing the point entirely? Is it that I have something of value to give to someone else? 
I used to tell my patients that nursing made me feel good. To take care of someone made me feel good.
I have seen so much physical pain and illness and yet I have seen the end and it is glorious. Patients with untouchable pain seeing you Lord in their last moments and peace enveloping their body muscles relaxing, pain gone forever. I know it will come. Today is just a hard day.

Even if the healing doesn't come-Kutless

Surrounding myself in song with your word.

You are faithful. I am weak. Hold me in your spirit today Lord. I know tomorrow the blessings will come. Help me get to tomorrow Lord. I surrender to you Lord. Amen.

Footprints in the Sand song- Leona Lewis

Nov 5 2015
As is usually the case in my life God has shown himself and I feel encouraged. I pray that God will reveal himself to you and bless you with encouragement also.

Monday, October 5, 2015

The up's and down's of thyroid

In July I was feeling tired probably from my trip to Colorado I told myself. Having CMT carries the danger of blaming any health related symptom on the CMT. Also because of CMT I have pushed myself hard my entire life. The kind of pushing a runner does to get through the marathon, beyond what your body tells you is  possible. This is not compatible with low thyroid however. So as we began the preparations to move I was pushing myself. I increasingly became more and more exhausted.  We were in the house just a few days and I had on of the worst UTI's I have ever had. The pain went away with medication but I was flat. All of the life sucked out of me. I returned to the doctor's office insisting that there was something else wrong with me. "are you depressed? It could be the fibromyalgia" were the comments I received from a doctor I had not ever seen before. Blood tests don't lie and are not usually subjective so I insisted on some.

There was something wrong- low thyroid! Even though I worked in health care hormone issues like thyroid are new to my base of knowledge but it made sense. So I started medication but actually got worse before I started feeling better. Cancer? Lupus? What was I dealing with? Well I still am not sure. My tests after 6 weeks of treatment have confused me. I can tell you I now know what it feels like to have some diseases that leave you so weak you can't muster up enough energy to get yourself a glass of water. I know my husband was scared. He actually started writing my eulogy, poor guy.

 I am once again calling upon God with a health issue. If I remember to keep him in charge the anxiety drifts and I can say "so what if it is Cancer or Lupus"?  I am feeling a little more like myself and well I am writing which I haven't been doing so that is a good sign.
I am confident He will oversee my every day.

Lord what a journey we have had together. I have never felt so close to death before. I have desired it at times due to pain- physical and emotional. Please forgive me for the doubt during those times. I have a renewed spirit and am full of things I want to do with my life. If it is your will I know that you will restore me to health enough to do the things that serve you. That is my strongest desire. Amen.

1/20/1016 Update- I am still confused on how the TSH and the T-3 and T-4 all work together but I am feeling better. The bad news is the weight gain is back and that is frustrating. I also continue to have some hot, cold and other symptoms. The more I read the more confusing ot becomes. I am seeing an endocrinologist now which gives me more confidence but it is a slow process. Praying for God's healing and guidance.

Sunday, July 5, 2015

Don't Quit

 My Mother had this and kept it in her bible. I had a plaque with the last verses in my house that my daughter now has. It has become a legacy to be lived and shared. I know it to be true in my life as some of my greatest triumphs have followed the darkest days. If you need encouragement copy this use it and pass it on. Healing really does take a lifetime and it can start today.

Don't Quit

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When funds are low and the debts are high,

And you want to smile but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won if he'd stuck it out.
Don't give up, though the pace seems slow -
You may succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late, when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out -
The silver tint of the clouds of doubt,
And you never can tell how close you are -
It may be near when it seems afar;
So stick to the fight when you're hardest hit -
It's when things seem worst that you mustn't quit.

- by Author Unknown

Lord help us to see you in every situation. Give us the  peace of knowing our life is important and the struggles are just a part of it. Father comfort those in need and give strength to any one being overcome. Your strength Lord. Take us all to the finish line. Amen.

Friday, June 12, 2015


"Your not believing for Gods healing" It really sucks when other christians assume your blessing or healing has not come because your faith is not strong enough. I have prayed for healing and expected healing to come from the Lord.  I am still believing God for healing and if the healing comes in death and being in Paradise free from this body, I will gladly take it.  I will be restored by His Grace and His love when it is time, until then I just need to trust Him to get through each day.

If you are hurting or in need of encouragement read some scripture. Find something that speaks to you, encourages you. He loves you so much and longs to answer your prayers.

Father we know you have plans for us, not to hurt us and we are trusting you Lord for your Grace and compassion. Hear us Father when it hurts to move in bed and we cry out for you, hear us Lord in our despair. I do believe in the healing power of Jesus Christ and the Holy Spirit. May it be so. Amen

Tuesday, May 12, 2015

Fibromyalgia Pain

The other night I left my computer open to move up the chair to the desk and I accidentally hit some buttons and the next thing I know it’s saying that it’s ready for dictation and I didn’t even know that I had dictation on this computer. I just recently purchased this notebook that October of last year when the screen on my old notebook died. It would’ve been great to discover that when my arm was in a brace for six weeks but I’ll take it now because I’m having such severe shoulder pain I can’t type. I don’t even really know how to get there to give it a shot.

Yesterday was a day from hell pain wise.  Seriously one of those days when you realize nothing is worth bearing this pain. I had three days of it this week. I guess it was a flare of the fibromyalgia which is disappointing because I blame my fibromyalgia on Colorado. This is the third time since we’ve lived here which isn’t bad I guess. In Colorado it would be three, four, sometimes five days a week. Between the barometric changes and the altitude my flares were extreme and often.

 Today we were out running errands and I did not have my pain medication so the flare got out of control and by the time we got home nothing seemed to help.  My sweet husband prayed over me and massaged my body vigorously and I drank some special herbal tea this was of course after taking the narcotic. Finally about four hours later the pain began to leave my body literally from my toes up my legs through the rest of my body slowly the pain stopped.

I understand why we have pain from injuries, surgeries, illness etc. but this pain serves no purpose that I can see. Knowing that it will continue to show up in my life makes me question God's and plan. When the pain is that severe I literally coil into a ball being weeping, yearning for death.  If this pain makes it so that I cannot participate in my life or anyone else’s what could possibly be the purpose? If the fibromyalgia continues to plague me here in paradise I will pray for God to take me because I cannot continue to live like this. Why not pray for healing you may ask? 

I started praying for healing in the late 90s. That is how long I have been dealing with this. At first I attributed the pain to my CMT or my car accident but a very intelligent persistent neurologist convinced me that overall screaming body pain was not CMT it was fibromyalgia. I was actually happy at first because I hate blaming my CMT for everything and there is definitely pain with CMT. But once I came to understand fibromyalgia and started taking some meds that help, getting massage, and limiting my activity it was at least helpful and gave me some sense of having an ability to control it. My fibromyalgia triggers are weather related and stress.It is the kind of pain unrelenting like labor and with it comes a fear that it will not go away and that it will get worse. In 2003 I made a definite plan to move to Hawaii after my daughter graduated and got settled into college. So, when the flares would happen I had that dream, (that promise of being at sea level with consistent weather which always seemed to make me feel better) to hold on to and it got me through a lot of flares and a lot of pain.

Now that we are here Lord what promise do I hold on to? This shows no purpose and no cure. Pain is a game changer and yes I sometimes get mad at you for allowing it. Please Father help me to see something positive in this. I need you to ease this pain. I hold to your promise th, at in heaven there is no pain and when the pain is at it's worst I beg you to take me. Jesus be with me, either here or there. Amen.

When I am on the edge of feeling forgotten by God I listen to nothing but Christian music that is real like this one There will be a day or   Praise you in this storm
Hope they can help you also.

Friday, May 8, 2015

Pain and perseverance

Lord it has been a rough week so much pain so much weakness hard to put my head in a good place. You have put great people in my life who are encouraging me including a friend who suggested I get a book on tape and it has arrived so I plan to start listening to it. Is called the Power of positive thinking by Dr. Norman Vincent Peale. I saw a movie made about him and it really spoke to my heart. It is mostly about you God and being sure of who you are. How to rid yourself of self-doubt and free yourself from worries stress and resentment which are all things I am obviously working on. I do believe that you love me and some day's, that's enough.

If I don't write because of the pain and then I just have to realize that even writing just a little bit is better than not getting my thoughts down at all. Sometimes I have to change my idea what my blog has to include it doesn't have to be fluffy or nice or pretty it just needs to be real in this week this is all I have to offer you. I saw this little nugget just wanted to share it with anyone who's struggling with chronic illness.
God bless
Turning straw in to gold

Thursday, April 30, 2015

Mothers Day Ideas from "Grace is Sufficient"


 I found this great list of Mothers day ideas and wanted to share it with you. Help the people in your life learn how to help you. This is from my friend Kim and her site is Grace is Sufficient

10 Great Mother’s Day Gifts for the Chronically Ill Woman

Each year my husband and kids ask what I would like for Mother’s Day. To be honest, they usually come up with the best gifts all on their own. Here are a few great things I’ve either received or would like. I bet you can relate!

Here are 10 Great Mother’s Day Gifts for the Chronically Ill Woman

  1. A slow cooker with a few ready to go freezer meals for those day’s you’re not feeling well. Having a ready to go meal in the freezer that just needs dumped in a crock pot can truly help on those days when you’re not up to cooking.
  2. A pillow for the bathtub. Hot water therapy is recommended for a number of chronic illnesses and chronic pain conditions. Why not have a tub pillow to allow you to soak as comfortably as possible.
  3. Cute lounging pants and tops. There are days where getting dressed does not make the to-do list or even the I’m-able-to-do-this list. Having a cute set of lounge wear will allow you to feel a bit better than resting around the house in torn sweatpants and a baggie t-shirt.
  4. A waterproof speaker for the bathroom. I found one of these on Amazon for my daughter for Christmas this year. It’s bluetooth operated so you can enjoy your favorite Pandora channel or playlist while soaking in the tub.
  5. A set of brightly colored paper plates, napkins, and cups.  I know going green is important to all of us but some days we just can’t manage preparing a meal and the clean up afterward. This will allow you a much needed break on the dinner dishes when you’re having a bad day.
  6. Homemade coupons for housekeeping chores. You might feel awkward or uncomfortable asking someone for help around the house. But getting a set of coupons for various jobs around the house would allow you to get some help from a willing individual.
  7. A Kindle or Nook. Reading can give you a much needed mental vacation. Also, you can usually grab an “e” version of a book for a bit less than the hard cover or paperback.
  8. A Netflix or Hulu subscription. There are times you can’t even focus to read. For those days watching a good movie or binge watching your favorite sit- com can be just the ticket.
  9.  A cleaning lady for a day or an organizer for a particular task. You may feel totally overwhelmed when you look at all the cleaning that needs done around your house. Bringing someone in for a day to tackle the jobs that your energy or pain levels won’t allow you to do, will help you feel more relaxed and comfortable in your own home. Is there a closet or room that needs organized so you can function easier? Finding an organizer that will work with you and understand your special needs will allow you to function better in that area of your home.
  10.  A beautiful journal to serve as a paper brain! Carrying a cute notebook or journal in your purse can allow you to make note of all the little things your mind just won’t keep up with.

Friday, April 17, 2015

I needed to read this today and it helped tremendously. Highly reccommend it.

Serenity when ill
and also this site
rest ministries

Be well!

Wednesday, April 15, 2015


 Lord on days like today with sharp pain in my body, I wonder where you are? Most people have one illness or injury to deal with and for me you keep allowing  more.

Yesterday was a beautiful day spent with my husband and on the island. Everything seemed perfect, but by the end of the day the pain in my hip/back started. I should look at yesterday as a gift I suppose but my desire is for many more days like that - many. Help my attitude Lord change my heart.

When I start to question why it gets me in trouble emotionally. My upbringing included the Catholic church which at that time, focused a lot on the sins and suffering from them. I only went to Catholic church until I was about 13 but some of those messages get ingrained in to your psyche so deep that I catch my self asking for your forgiveness Lord when I am in pain or having difficulty. The truth is I am already forgiven and the price for my sins is paid though the conversations of prayer with you are always healing there is no penance required on my part.

So why the pain? Purely physiological? Nerves being irritated by activity? Spine out of alignment? Where is the healing Lord? I am not a martyr and I do not take my pain as suffering for some greater good. I take it as a huge inconvenience and a disappointment following a good day. I am asking Father for healing from pain. Please give me the wisdom as to what I can do to stop it. This sharp pain is almost intolerable. I love you Lord and I trust you and I know that the pain today is just a blip on my life's radar but it is real. I need you Lord to heal my spine and alter this pain please Father.

Tuesday, April 7, 2015

Time for a cane

I am happy to say I have started to use a cane and it has been quite useful! It helps my balance and my confidence - this is walking with out my AFO's like I like to do sometimes. This is part of the acceptance I have talked about.  I am really glad my physical therapist suggested it. I have also noticed when people see me with a cane they give me more room to walk through a crowded room, etc. I think it will let people know someone who has trouble walking is here and needs to find a chair like when we went to the movies this weekend.This is not a loss it is a gain and I am grateful to have it and have a little more freedom using it. Might sound strange to some. Never judge another until you have walked or in my case stumbled in their shoes.

Lord I am so incredibly grateful for the physical therapist that you have brought in to my life here and how much knowledge she has about CMT. I love working with her she is a good listener and has deep compassion. She was the bright spot of my day. I pray Lord that you will give me an opportunity to share you with her. Please give me discernment and help me tell her who you are in my life. Your such a great and awesome God and I want to share that with others so badly. I know that I can do all things through Christ who strengthens me! Amen

Monday, March 30, 2015

One way to end Charcot Marie Tooth?

One way to end CMT is for people that have it to refrain from having their own dna offspring. I was told in 1980 by a genetics counselor I had a 50/50 chance with each pregnancy to have a child with Charcot-Marie-Tooth. My first reaction at that young age was based on the 2 people that I knew who had it my father whose symptoms were so slight he did not know until I was diagnosed that he had it, and myself. I had corrective foot surgeries in 1977 and 1978 that changed my life - I thought forever! CMT wasn't so bad I thought and medical care just keeps getting better so I ignored the warnings including the concern for my physical ability to handle pregnancy and birth, I just did not equate the two with CMT and possible progression of my disease which did occur with each pregnancy. I rolled the dice so to speak because I wanted children so badly and it never occurred to me that if I did pass on CMT and that it could be worse or progress faster than mine had, I got lucky, 3 kids no CMT.

If there had been access to the Internet at that time I would have had a better understanding of how CMT can affect people differently and it can be so much more severe in childhood than mine was. I may have made a different choice. If I had experienced what I have in the last 10 years from progression earlier in life, I would not have taken more than one chance if even one. I can't imagine my life without my children it was all I ever really wanted to be was a Mom. But I did take the chance and feel very grateful they have all tested negative. My children have had other health problems unrelated to CMT which include epilepsy, endometriosis, IBS, lactose intolerance, poor vision etc.

Now the first baby by way of In-Vito fertilization where they were able to remove the CMT gene before implanting the egg in to the mother has been born. Pretty crazy. A step in the direction of creating healthier less physically challenged generations. Can't imagine it is affordable for the masses but maybe eventually. Unfortunately there are many people who have CMT and just don't know it yet, some are grandparents when they get diagnosed. So a world genetically engineered not to have CMT is a long way off.

Fortunately there is treatment coming which will stop the disease from progressing and in that I find Hope. If treatment could begin with proper diagnosis future CMT patients would potentially live normal lives and possibly never even know how lucky they are to miss out on the symptoms and nagging black cloud of progression hanging over head. Even for myself now, looking at using a scooter, if I could take a medication and know that I would never get worse I would be so happy. The day is coming hang in there CMTers. Have hope!

Lord what news through your guidance I believe, and seemingly a man made miracle taking the CMT out of this child. Help us Lord to not become God in the laboratory and in procreation. Help us also Father to find better ways of diagnosing ilness' and better treatments for them. It has been a long 54 years for me with CMT. I have never known life without it which in a way is it's own kind of blessing. Please give the doctors working with genetics wisdom and help us all to understand the direction things should go. "Lead us not in to temptation but deliver us from evil". I am so grateful to have this forum to speak my truth and what your spirit prompts me to. I need continued wisdom and discernment myself, wanting only to walk in you will. Amen

Thursday, March 26, 2015

Muscle spasm

Lord thank you for your patience with me I am undeserving but grateful.

My husband just bought me a brand new box of 64 Crayola Crayons and if you  know me at all you know how thrilled I am! Color, coloring, creating, wonderful. When I am need of nurturing coloring connects me to my mother who was such a good nurturer. She would sit and color with me in the hospital and at home when I was sick. A brand new box of crayons is a world of possibilities and is so much fun to open. Each crayon perfect and waiting to be used. I hope God sees me this way not perfect but willing to be used by Him.

Charcot-Marie -Tooth my chronic disease is not usually the cause for my pain. Overdoing it and when I am physically tired can cause pain. I get cramps or sore muscles but overdoing it for me can be simple things like pulling weeds for 10 minutes or walking without my AFO"s for too long. The horrible, awful, burning, aching allover  (don't want to live) pain is from fibromyalgia and since we moved here I have had only 3 of those days for me each accompanied by huge barometric pressure changes and storms. When I started with hip pain last week my mood plummeted because I immediately think the reprieve is over and I am back to everyday pain, but it wasn't the case. Sometimes we diagnose ourselves in to trouble which as a former nurse is easier for me to do.

I have been in terrible pain. Felt like a knife stabbing me every step I took. Saw my chiropractor yesterday and he was awesome! Left there feeling so good. Turns out it's from my piriformis muscle being is spasm. My spasm was causing my left leg to shorten 1 inch! He warned me it may try to spasm again and it did last night. In tears my poor husband holding me nothing he could do. My chiropractor told me to never stretch a muscle in spasm because it causes micro tears in the muscle and more pain. I am resting and laying on a heating pad which is helping. Taking drugs that are strong enough to hide the pain. So what put it in to spam to begin with? Partially the new physical therapy exercises and possibly walking down some stairs- not exciting stuff like mountain climbing or zip lining but that's my body. It is always something it seems, but pain is a game changer isn't it? I can't really blame this on CMT because anyone can get this it's just that their story would probably be more exciting. Still trying to adapt to living within my capabilities, it's a constant challenge.
Sobo 1909 295.png
Buttocks seen from behind (the piriformis and the rest of the lateral rotator group are visible)
Sobo 1909 298.png
Muscles of the gluteal and posterior femoral regions seen from the front.

Thanks for reading and checking out my blog. Please leave comments and any prayer requests. Tell me what activity you do when you are in need of being nurtured or comforted. I also appreciate your prayers. I am off to color!

God you are a powerful and the mighty healer. I need your healing touch and your peace. I thank you for my loving husband and his sweet gestures. Help me to handle the pain better and to learn from this what I need to do to be healthy. You are my comfort and I lay myself before you broken but willing to answer any call you give me, I love you Jesus. Amen

Thursday, March 12, 2015

To Scoot or not to scoot

Not a long post but one with lots of links to other posts in case you have time to read them.
It is getting to that point for me trying to figure out when to get a scooter and which one. Of course I first have to get my insurance to be on board. I want to  remain as independent for as long as possible and a scooter is what will help me achieve that. We went to the only medical supply store here and I test drove one on low power then turned it up to half power and almost took out a shelf in the store! Kind of fun! Keeping a good sense of humor is so important to this chronic illness gig. I looked online and even found a scooter that will go on the beach which excites me beyond explanation.

Smaller than a coconut!

Before I get a scooter we have to move somewhere that is handicap friendly. The small place we are in is not. I know you are asking why? how? well the rental market here is tough and having a dog even if he is small makes things harder. So when we were in a pinch we rented this place and actually given all of my infirmities in the last year it has been good to be in a small place but it is not very accessible and that is unchangeable. The hill from the driveway is steep and we have to go around through the yard. Also the kitchen drops down a step but I really don't need the scooter for inside at least not yet. Really I need it to go places, beach paths, shopping, events etc. It won't do any good to get a scooter until we move so on craigslist I am but Maui is not handicap friendly in general so patience must be my choice. That and prayer. Lots of prayer. God found us this place and got us this far I know He will complete our journey. Patience.

 Lord you know my needs but I am asking for patience during this process and for your favor to find us a new home, something quiet, safe and big enough for us to stay a long time. A place where we can serve you father and reach out to others. The place you have for us, help me find it. Lord give me strength to endure and wisdom for coming decisions. We love you Lord. Amen.

*3/5/16 Praise! We are in our handicap accessible apartment and I have had my scooter for more than 3 months now and it is everything I had hoped it would be! I love the independence and the ease in getting myself around here in our complex or to the doctor. When we go places together it is really nice for me to move where and at the speed I want to go!

Saturday, February 28, 2015

NY Times Article

Read the article and let me know what you think- Written by Anne Patchett

Finding Joy in My Father's Death

 This is my opinion-
Honesty - so refreshing. I get it. I worked hospice as a nurse for many years and I have had a father almost die several times, when he actually did die it was a comfort to know he was free from pain. I have also taken care of a beloved aunt doing what I could to make sure she died in her own bed the way she wanted to. And I have mostly felt accomplished, relieved and joy. Yes joy because I do believe in God and I know this is not the final destination. I now face many health problems of my own and have had several real conversations with my family on what is NOT to happen if I should be unable to speak for myself. Death is simply a transition and often the end of suffering as it was with her father.  My husband plans on being happy for me whenever I go and it makes me smile!
Lord help us to know that death however it may come is the passageway to your heaven and to remember for those that are are suffering it is even more amazing because there is no pain. Although we will miss our friends and loved ones it will not be long until we are together forever.Amen.

Monday, February 23, 2015


I am handicapped- there I said it! It is a reality I must come to terms with. I believe it will it make my life easier. I stopped hiding my CMT when I quit my last job and met Bernadette online and saw her videos. But not hiding it and identifying yourself as handicapped are two different things. I am scheduled for physical therapy next week and will get some advice of which device would help me to walk on sand and also identify me as handicapped. I am over fifty and it is much easier to address this issue now. I have lost most of my vanity and youthful exuberance and wearing AFO's for the last few years with shorts and skirts has also helped. The problem is with weak arms and injured right elbow and wrist I am not sure what suggestions they will have. I am open to whatever works at this point.

Pick a new coping skill to work on!

When you are chronically ill there are always obstacles to overcome and levels of physical challenges to deal with. For me the last several years have been a steady decline possibly due in part to taking Cipro for UTI's and sinus infections. As it turns out Cipro has a class action lawsuit against it. Google it and find the issues. The main one for me is that it can cause peripheral nerve damage which the CMT already does and it did not need any help! I had been taking Cipro 4-5 times a year for the past 6 years before I learned about this. I can blame my doctors but I won't. I can blame the manufacturer but I don't. I am a little miffed at the scientists who were sitting on this information hoping it would not be an issue. The last time I took it was August of last year. I am hoping I will not see any further decline now that I am not adding to it by taking an antibiotic. Before this my CMT advancement was so slight I could hardily notice.

With CMT one of the problems is that there are muscles that don't get get used because the nerves can not communicate with them. So I need to be structured on my end doing stretching and swimming, a little lite exercising. I have had increasing times of fatigue probably from fibromyalgia, so it is easy to nest in my recliner and put off the things I need to do. During these times of fatigue the days can melt together and before I know it the week has gone by. Balance is what it is all about constantly trying to find the balance. Knowing when to push myself and when to hold back is constant.

I also need to have  purpose and volunteering one afternoon at the Whale Sanctuary has been great. I am on my feet a lot talking to people about whales which I love to do and I just need to allow a day to recover. As the season winds down I am told so will the interest and there will be fewer visitors. After failing at some previous attempts to volunteer here it is important to me that I succeed in this.

I have learned so much from other bloggers on these issues and appreciate their work. I encourage you to visit them.Here is on of my favorites Seeking the Still. We gain wisdom by seeing the world through other people's eyes. We also increase our compassion and compassion helps us to focus on others instead of ourselves which helps the depression we can get. Your symptoms are valid and important but when you obsess about them your world shrinks. Keep it large and full of people who you can pray for and write a note of encouragement to. People who are just being diagnosed and are on a steep learning curve that you can help. We are here for relationship, to each other and to God. Listen,learn teach. This week I was gifted a song which touched my heart in ways I can not explain and it came from the blog above  Keep making me.
Even when I am nested in my recliner I spend a lot of time in prayer. Prayer encourages me on a day when I have otherwise been unproductive at least I have taken time for prayer.

Lord today is a good day for you have given it to me. Help me to use it for your glory and for others who need you. I do so love you Jesus and want you to be the center of my life instead of me. Help me to replace myself with your word and promises. You are such a gift in my life. Amen.

Monday, February 16, 2015

Trauma Blog

I have finished the third chapter of my trauma story it is a good feeling to have it done. I am not sure why the spirit pushed me to do it but I feel a great sense of peace now. If you have not read the first two chapters go here-…/my-trauma-story…

The third part to the story can be found here-…/part-iii-of-my-…

Monday, February 9, 2015

Fighting the fight!

Last week was one of the best we have had since we came here. My energy level was high we did a  lot of fun things including seeing turtles surfing in the waves! It will be one of my favorites ever but this week has brought pain and weakness and financial worries. When I was able to work as a nurse I made really good money and it is so frustrating to me that I can no longer contribute financially. I feel guilty, frustrated and overwhelmed as always.

I know all my husband really wants is for me to be happy and enjoy as much of life as I can. So why do I fall back in to being angry. The enemy has a stronghold here in my life and I earnestly praying against it. I need to stay positive and keep counting my blessings. I need to have faith in God to improve our finances. I need to take a day off and physically rest when I need to. The enemy has stolen enough from me in my life I am making it my Job to see he doesn't get any more! If you can think of any scripture or quotes to send me I would love it.

Thank you Lord for reminding me that I am yours. In the comfort of your arms I lay my head to rest and pray that I can serve you tomorrow better than today. Amen!

Saturday, January 31, 2015

Yearly inventory

By the time I warm up to my birthday it's over .♡
I usually make an inventory list on my birthday of what I have learned or reaffirmed in the last year mostly because I want to be
the wise old woman everyone listens to. I can't believe it's been a year tomorrow that we have been here!

So here is my wisdom list - Things I have learned or affirmed
  • Having dreams come true is amazing but there is always a price to pay
  • Gecko tails come off if you grab them but they grow back
  • It does get a little chilly in Hawaii at night after you have been here awhile
  • Walking on a boat without my AFO's is no longer an option
  • Having my dog almost die really shook me up - never saw that coming
  • Investing in someone else's dream might be the defining moment in your relationship
  • Losing my vision was the scariest thing to happen this year
  • Telling people I would be happy to live in a studio apartment on Maui may not have been realistic but we are making it work
  • Writing about my trauma helps to take away it's power over my life
  • The threat of a hurricane is blown (ha) out of proportion
  • Being prepared for a hurricane makes me feel more secure
  • My husband is braver than I have ever know any man to be
  • My idea of a good movie is not Hollywood's that's for sure
  • Missing people is constant but if your the one that left you can't complain
  • Ambien is what was missing on my med list - Love that stuff!
  • People can block you on fb for no apparent reason
  • Whales are incredible mammals and I want to swim with one
  • I still hate centipedes!
  • Accepting my health makes me less angry and it's easier to be grateful for the health I do have
  • They make scooters that can go on the beach!
  • I love my little brother so so much and I am so proud of him!
  • Finding good doctors, ones that care and really listen is like gold
  • Taking Cipro 4-5 times a year the last 6 years has progressed my CMT
  • As much as I love my hubs I still want the bed to myself
  • It is not fair to have hair on my lip and pimples
  • When God wants your attention it is best to give it to him unconditionally
  • My husband will do anything I ask so it is important to keep what I ask of him respectful and honoring to our relationship
  • I am a survivor and an incredibly resilient lady who loves with a strong heart
  • Being less social makes me very unhappy
  • Watching Parenthood has made me a better person
  • Having more good days than bad is worth all of it
  • I have judged some people in my life to harshly and myself even worse and I want to be done with that
  • I love beef and I don't care if I am addicted to chocolate
  • Asking for something I need is so much better than being pissed off that someone didn't figure out I needed it
  • Some friends are forever friends and they love you unconditionally
  • Some friends are not
  • The harder it rains the bigger the waterfall
  • I think way too much about possible outcomes in other words I worry too much
  • "Church" is not really my thing Jesus and the word are
  • Living by the spoon theory really helps me and my hubs
  • In spite of mistakes I made I have 3 incredible children who humble me
  • Love is the greatest commandment, Hope gets you to the next day and faith carries you when you can't make it alone
  • When people love you and support your dream they buy tickets and open their home to you and they make an effort to stay connected and I feel loved
  • My new favorite flowers grow on lilikoi vines and for only a few days
  • Not being able to feed yourself or even cook really was frustrating
  • I want to live more in the present with intentionality purposefully because I think it will make my life more valuable to me
  • I need to love and intention in to my relationships constantly and show others how often they are thought of also prayed for
  • I need to trust God more and worry less
  • I need to take good care of myself and eat better and rest when I need to

Lord help me to stay focused on your plan for my life, keep my heart open and my attitude positive. I know that I know that I know you are God and no matter what comes my way I will feel your comfort and be in your arms forever. Let the next year be full of your blessings and may I have a heart of gratitude. While I am weaker and my disease has progressed I am resilient and I want to be used by you Lord I am willing. Lead me father I am yours. Amen

Also wanted to put a plug for one of my favorite blogs her list of goals is awesome.   A new kind of normal - check it out! 

Tuesday, January 6, 2015

Acceptance and peace

Today I am thinking about the book my daughter told suggested to me   "One Thousand Gifts" and how much it helped change my attitude at the time. Lately I have had a hard time expressing gratitude but I truly am grateful for so much. We have a solid roof over us, plenty of food and a nice car I love to drive. We live in the most beautiful place on earth and I am constantly reminded of Gods grace and power in my life. I have an awesome family and lots of love.

Depression is one of the most common complications of chronic illness. It's estimated that up to one-third of people with a serious medical condition have symptoms of depression.I certainly struggle though I have come to a place of acceptance with my physical illness's CMT, fibromyalgia and interstitial cystitis. It is simpler than I thought it could ever be mostly because I have been willing to seek God in this and have let go of some anger, frustration, and disappointment. I also have an excellent therapist who helps me immensely. The new medication for the IC is really helping and I feel more empowered than ever before. I now know the intensity of a flare up and how to respond.

 Looking at other blogs and reading books about chronic illness and pain is also helping. I can't believe what some people have to deal with day to day. But comparing yourself to anyone is counter productive because whatever your Worst thing is, it is harder than you ever thought possible. 


Lord help me to rely more on you than myself and to be honestly grateful for all that I have and that you provide. Jesus continue your work in my life and help me to be strong through you. Let someone else's life be encouraged by reading this. Amen.

Thursday, January 1, 2015

God is in it..........

What a year you have led me through Lord! Major move leaving loved ones and a life we knew for paradise and hopefully an opportunity to serve you and be healthier.
362 days later - I certainly have learned that no matter what, God is in it. I miss people but I do not miss Colorado. We have been blessed in so many ways with jobs,cars and places to live. There is less physical pain overall but this last year has been my sickest ever. It's almost as if everything that has been bottled up inside from stressful circumstances has oozed out of my body in the form of one infection or another or injury. My CMT has progressed a lot this year and I am starting to look realistically at the future. My faith has been pushed to the edge but it has been the one constant this last year.

I am thankful for my online support groups and for opportunities to help others. I am also thankful for the new people you have brought by way of blog, book or from my health care team. I have asked many of the same health questions for years and had to come here to get the answers!

I mourn the loss of old friends and people who have had an affect on my life and I am grateful for the deepening of some relationships in spite of the distance.

Lord I am more sure of you now than ever before and I have learned that your will and my will can be vastly different. You have closed many doors that I was wanting to go through and made it clear it was you doing so.

 I have also come to terms with the difference between happiness and peace. Right now with some of my medical issues under control and many questions answered I am at finally at peace. I know that no matter where I am or end up, you are there Lord it's just that sometimes my flesh get's in the way and tries to divert my attention from you and your word. I have to remind myself that God is in it.

Father I am praying earnestly for your healing of my eyes. My life is already so solitary without my eyesight I would not have much desire to live in this world. I used to think physical pain was the worst that could plague me and before that emotional pain but now I truly value my vision and reading, looking at your tremendous creation and just not being afraid of falling so much more than I ever did.

Lord I want to serve you in writing this blog but it does take some of my spoons (energy) that could go toward other things. Please guide me how to proceed. If it is your will I am willing but if not once again close this door for me, but without losing my vision please. I hope I have grown enough that it doesn't take such a dramatic lesson to learn from you.
Kolo and the coconut- Sarah's beach

Father the world barrages us with "things" and messages we should have or be. None of that is from you. Your word convicts us but it always comforts, always encourages and your spirit brings us peace. Be with anyone tonight that has lost sight of you or turned away. Grab a hold of them tightly until the morning sunrise edges out the darkness and calms their heart. Show each of us how to serve you more and ourselves less. Father let tonight be one of forgiveness and letting go and renewing relationship with you. Help us find peace, your peace that supasses understanding. Amen!

If anyone is reading this blog now would be a good time to tell me.
God Bless and Happy New Year!