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 ...

As I look at this time of thanksgiving I can't help but feel less than who I want to be for a moment, but with a progressive disease I know all too well, next year I may be unable to do some of the hings I am doing this year. So being thankful at this time of year for what I can do and for the blessings I do have is so important for my spirit. It takes more effort to forge through than to sit in self pity but if you keep at it soon it becomes a habit.  None of this is possible without my faith and God's blessings.  Is life perfect? No.  Do I have everything I want? No.  But with Him I have everything I need. Being thankful - I am not perfect at it and sometimes I work at it harder some days than others but I do know being thankful fills my heart with joy and takes my focus off of me. It brightens my mood and gives me energy.   This is last year when just the 2 of us this year we will have 8! I would have never guessed we would have company t...

                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...

I have had too much going on physically. I am overwhelmed and I have been trying to be strong not just for me but for everyone else. Today during a therapy session I touched back to my childhood and revealed where it all started------- In a hospital getting poked and prodded. Having my privacy invaded and ignored. It started when I was being told " be a big girl, don't cry, be strong". It was my mothers voice.  My experience started in 1964 and that seems like a million years ago if you look at today's medical environments. There were visiting hours and lots of rules. There were wards rather than rooms and a very cold sterile environment. Procedures were not explained to me I was told what to do but not what to expect. When I was eight I had both an upper and lower GI. The x-ray attendant was unkind and impatient which resulted in quite a mess. It just gets worse but now the picture is painted. I think we all look for something we have control over in experiences...

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...

Can't believe it's time for double fives already! Starting a few white hairs coming though so no denying it. This last year has been another one full of change, acceptance and growth. Wouldn't want things to get boring! All in all it has been a year full of good memories and time well spent. I love Jesus even more than I ever have.  Michael and I are in a good place, a little bumped and bruised but happy and healing. My kids are living healthy happy lives with good people in them. I officially retired from nursing and am just grateful to have done it as long as I did. My favorite past time is coloring. I have been coloring to relax and bring calm in to my life for a long time.It is a positive memory from my childhood and comforts me. Now that adult coloring is popular I have more choices of what to color. I really like gel pens they make it easier on  my wrist. I pray for the person I am making the picture for while I am coloring, so it serves a greater purpose. ...

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 ...

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 ...

"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...

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...

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...

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...