Truth as I see it

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

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

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

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

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

  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

"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

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 t

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 off

    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 E ach 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 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. 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 soa

I needed to read this today and it helped tremendously. Highly reccommend it. Serenity when ill and also this site rest ministries Be well!

  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 heal

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 s

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 C

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 sin

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

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 pass

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 ye

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- http://healingtakesalifetime.blogspot.com/…/my-trauma-story… The third part to the story can be found here- http://healingtakesalifetime.blogspot.com/…/part-iii-of-my-… Thanks.

Tears - Joy- Comfort Keep making me Thats all!

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 s

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 Wri

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

In my post Exhaustion on my other blog I prayed for God's help and for some reprieve from all that was coming at me. I surrendered to His will and desires. Then, my husband called with an injury at work! What! This is not an answer to prayer I thought. But maybe it was sort of. Having my husband home even with his hurt left hand was HUGE. He was there to help me get dressed, bathe, make food etc. and great company. I had been trying to get along by myself and that was a big part of the frustration I was feeling. Amazing how having more help and fewer struggles changed my attitude. This had made me think about my attitude in general and how it is fueled positively by less challenges and negatively by frustration something I need to be  more aware of in the future. I have had more PTSD triggering because of my arm but handled it a little easier with less exhaustion. I have been using my self talk and breathing - visualization exercises to keep me from the trauma an

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 th