Truth as I see it

I sent this letter to 10 people in my life and one of them told me it inspired her to talk to her family about her pain. I am putting it on the blog hoping it may help someone in some way. Blessings This is an open letter to the people in my life that mean the most to me. I am sharing information with you so that our relationship can grow. I am going to be real and make myself vulnerable because our relationship is important to me. I have many ailments but the hardest thing I have to deal with is chronic pain. I want to explain to you for the sole purpose of understanding what I go through. Dealing with chronic pain is all about energy, the more pain I am in, the more energy my body sucks up to deal with it. Pain is like an energy vacuum. So when I am dealing with a lot of pain, I am left feeling as exhausted as if I ran a marathon that day, the day before and every day. When I am short or blunt with you it is because of this. I do not intend to sound callous or ...

                I sure would love to hear from some readers. Let me know how this post was received by you in the comments at the bottom. Thanks! September among other things, is Charcot Marie Tooth Awareness month . I have two tabs on the top of this page that can explain CMT and who discovered it. For this year I want to talk about what CMT is to me. CMT, I have had it all my life and yet it continues to present me with new challenges. I am 55 and I still try to ignore it and on a good day almost get away with it. When I over do it my joints ache and throb with pain. I have learned to adapt, evolved I suppose, in to a creature that is determined to be resilient. My arms are very weak now. I was trying to strengthen them but it only made things worse . My feet are turning in more and at night the pain from the calf muscles makes it hard to sleep. My body wants to curl in to a ball, it's tempt...

" 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. "    Suicide is not an option   I often say "pain is a game changer", it is. I was going along engaging in activities, living my life, feeling good about things and the pain got bigger than me. It hit hard 2 weeks ago and has gotten worse every day. I am once again broken beyond possibility and am just trying to survive until Tuesday when I get another cortisone shot in my hip. Honestly child birth was nothing compared to this. The enemy loves to attack in times of weakness and has been on full assault. I have doubts and am terrified my life will continue in pain. I had a handful of pills but remembered my promise not to ever play God and take my life. It will have all been for nothing if I do. I am being honest here it is too much for me. Today i will takes as many meds as I think are safe and try to get thro...

I just started the book Choose Joy which is very popular right now. It is made from blog posts Sara Frankl wrote before she died of a disease that is ten times more horrendous than anything I have to deal with. That is intimidating. I have sometimes complained of the low numbers of Christian bloggers who keep it real when it comes to chronic illness and pain. I have prided myself on the many coping tools I use. I have grown in my faith and praise Jesus so much more than ever until I have a 10+ pain day and then where is my faith? I realized as I ended the first chapter it's not about comparisons. I am reminding myself of what I say in my post Worst thing   on my other blog but it applies here also. What ever your worst symptom or pain  level is or has been, it is your worst thing.  It is the place where hope is losing and fear charges in. It is full of doubt and confusion and I believe not from God. It is what we try so hard to stay away from. Sometimes a new sympto...

Need to have a chat with the pain management doctor tomorrow and am feeling anxious about it. Pain makes my life unlivable at times. Pain steals my joy and definitely affects my sense of purpose. Not wanting to live with any more pain is not the same as being suicidal. It means for me at least that I am going to start making some noise until someone finally hears me. Living in pain is unacceptable. We don't let our animals live in pain. Pain breaks me down in to nothing of any value. Similar to the argument from my primary care doc about chronic pain being managed by narcotics reduces your life. Huh? Same theory reversed reasons. I am definitely going to try and get the attention and care I need and should have if it doesn't happen I am going to mm teas, oils, lotions. I will not have any choice. So where are you in this God ? Are you closing doors and opening new ones. I trust you to find a solution and to use whomever you need to make it happen. I need to not live in this k...

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...

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 ...

"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. Betwe...

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...

  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 al...

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 dealin...

Cant’s! I am so sick of cant’s! Can’t do this can’t do that! I want a long list of things I Can do! The most recent can’t came yesterday when my hubs and I went to check out a beach where a group called Beach Dance meets. Moving, dancing on the sand is so much safer for me because the sand is forgiving both with movement and if I fall. The idea of spending an hour dancing with others and enjoying time on the beach was so enticing for me. Well Boo! The beach is inaccessible to me. It involves a ¼ mile hike over uneven ground and around lava boulders, which will shred you if you fall on them. On a positive note if you come visit me I will tell you where this beach is! So I am on to the Can Do list. Actually I am making it in to a Want To Do list because that is more empowering. Not a bucket list but things I can do on a regular basis. I could have completed the hike yesterday against my husbands advice and probably been injured maybe even needed a helicopter evacuation to ...

Another comedian admits to depression. Wayne Brady gave an interview and really opened up. It just goes to show how many people hide their depression and even enough to work making other people laugh. Sad. I certainly put on my smile for others but I don't have to do it to make a living. I always found it easier to feel "up" when I worked because I was focusing on other people.The more celebrities that share openly the better it will be for all of us. Depression can be part of a normal  grieving process with any loss, it can be biological or the affect of PTSD. You can't just decide to be happy if you have clinical depression. You have to work at it through therapy, educating yourself, lifestyle, diet and sometimes pharmaceutical aid. I have a brain that was permanently affected by severe trauma and I have learned to look at the meds as a positive and be grateful for them. An earlier post PTSD Facebook Page talks about how they can now see on an MRI...

                             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 you have thought of suicide 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 se...

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