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...

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 ...

  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 ...

I am feeling a bit overwhelmed this week from health issues and I am beginning to wonder if I will ever be healthy again? I was thinking about the condition I was in 7 years ago when I stopped working as a nurse so that I would not be as tired and to get healthier. Neither of those 2 things have happened. In fact it I would love to be in the condition I was in 7 years ago and as badly as I feel now I wonder will I be saying the same thing in another 7 years? Will I wish then to be as healthy/unhealthy as I am now? It is hard for me to believe being much more unhealthy than I am now is livable. I know there are many of you you who suffer from all kinds of ailments and chronic disease's that can attest to having the same thoughts. I am not trying be a downer just stating how I feel today. My only hope comes from knowing my destiny is in Gods hands and however long or no matter how much suffering I have on this earth I know I will be in a new body and well in Heaven. There is a tr...

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 ...

The precise meaning of chronic is "persisting for a long time", and it is used chiefly of illnesses or other problems. If you are chronically ill chances are you are operating at max capacity every day. I know I am and have been for the last 26 years. I feel like the child’s game where you try to fill the bucket with out it spilling over and when it does the game is done. I feel like if I get one more thing medically to deal with – game over. Today I had to yell at a nurse over the phone, to get the help I needed. This should never happen! One of the reasons I went in to nursing was to make a difference, to actually care about and help people. Patch Adams one of my all time favorite movies touches on this and is an example of what I am talking about. When I worked at a hospital a patient with nausea and vomiting requested lime Jell-O and his nurse did not order it so I asked why and she said he would just vomit it back up. Since there was no medical reason he coul...

Jean-Martin Charcot Charcot's primary focus was neurology. He named and was the first to describe multiple sclerosis . [2] [11] Summarizing previous reports and adding his own clinical and pathological observations, Charcot called the disease sclerose en plaques . The three signs of Multiple sclerosis now known as Charcot's triad 1 are nystagmus , intention tremor , and telegraphic speech , though these are not unique to MS. Charcot also observed cognition changes, describing his patients as having a "marked enfeeblement of the memory" and "conceptions that formed slowly". He was also the first to describe a disorder known as Charcot joint or Charcot arthropathy, a degeneration of joint surfaces resulting from loss of proprioception . He researched the functions of different parts of the brain and the role of arteries in cerebral hemorrhage . [2] Charcot was among the first to describe Charcot-Marie-Tooth disease (CMT). The announcement was made s...

September is Charcot-Marie-Tooth awareness month and it has been a part of what prompted this blog. "Time to tell the world about CMT" from the movie Bernadette. A documentary has been made about a beautiful friend of mine Bernadette Scarduzio, it shows her life and her struggles with CMT- Charcot Marie Tooth the same disease that I have. Please view this link and feel free to pass it on. The movie is simply called Bernadette and can be found on Hulu or Amazon. https://www.youtube.com/watch?v=lUZC3cE7_CA The second clip talks about it being a family secret because for generations families have just tried to deal with CMT and not talk about it to each other.   https://www.youtube.com/watch?v=4-iQs7vBG_0 .  This happened in my family. My father did not know he had it until I was diagnosed because the range of symptoms can go from mild to severe at any given age. My father and I never talked about CMT. Up until 4 years ago I had not really talked to my kids about CM...

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