Truth as I see it

Feeling low energy but still so inspired by a book I have been reading, "Life Disrupted" by Laurie Edwards that I am going to quote her book here instead of writing a longer post myself. Most o f these thoughts are not new to us but it is somehow comforting and empowering to have them written down. Laurie's writing really speaks to chronic illness situations and solutions. I am so blessed to have found her book by way of her blog . It was one of those nights my fibromyalgia was in a frenzy and even though I was exhausted there was no sleep to be had and I googled chronic illness blogs hoping to find one and actually found a ton. When I read her words I was captured and instantly became a fan. Now that I have her first book I am reading it slowly to soak it in and hopefully cement in to my experience. It is my pleasure to share more of it here with you. "The line to adapting to physical problems and ignoring them is precariously thin.-  "In our sickest mom...

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 m...

YES! Yes! Yes! The movie Exodus is spectacular and I connected with Moses shaking his fist at God questioning Him. I understand that and because of doing it my faith has deepened so much. He can handle your emotions He created them! "This blog will focus on faith, depression, surviving and hope. I talk to God openly and for some it may seem irreverent or disrespectful but He already knows your thoughts so why not speak them out loud! I do know that God is good and my faith holds my life together. "-From my profile. I cried on the passover scene so grateful to be saved by the blood of the Lamb Jesus Christ. This movie is an amazing account of Moses and closer to bible. I strongly encourage you to see this in the theater. Lord I am so full of love and appreciation for you and your sacrifice. You alone have freed us from bondage and set our spirits free. I am in awe of the immensity of your love for us! Praise be to God! Help others to see this film and be inspired by...

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 ...

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...

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...

After some input and prayer I have decided to split my blog in to two different blogs. This blog will continue to deal with chronic illness and faith and my other blog will be focused on PTSD and healing. The link is http://healingtakesalifetime.blogspot.com/ Thank you- Mauigirl

Your kidneys are failing???????????? I have had UTI‘s  aka urinary tract infections, since I was 7. I have been worked over by specialists, had 2 bladder surgeries, scoped twice, been asked the same mundane questions repeatedly, taken meds that as it turns out probably made my CMT worse and now my kidneys are failing? What did I do? How can this be happening? Ok you know what, I don’t even care anymore. Stop this ride I want to get off. I am not a martyr! I am so tired and can’t fight any more battles just to hold on to a life that is so incredibly difficult. Seriously maybe it’s time. Poof! Your gone, can’t take it back. Ah but I can. My God is amazing and he is full of compassion and mercy. He is big enough to hear my prayers, my complaints, my doubt, and love me anyway. I talk to God like I talk to most other people and he hears me. I asked him to heal me if he could make my life worth living – physically speaking. Lets re cap the last few months Respiratory i...

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...

The following is a letter  I wrote to my family about 3 weeks ago. I genuinely just wanted to be real with them and didn't want them to be taken off guard if my condition worsened. Now they are all upset with me so I guess it wasn't a good idea? I find myself writing to the unknown and countless souls in the world who may, like me, just need to talk. Also to those who like me, believe in a God the creator with whom I feel confidant can handle my anger with love and grace. Friends and family I have been through a major health crisis this last week and I am now embarrassed to say was hoping I would not get better. I am tired and really fed up with this poor excuse of a body God gave me. I have tried to hold on for so many reasons for so long but it just keeps getting harder. I have been a little hopeless and that leads down a deep dark hole for me. Then my kidneys st arted to fail and I thought this really could be it. I prayed that God would heal me. N...

Also from Plumb Lord I'm ready now

It's the nights that are hardest for me. My husband is asleep and I am chicken to go to the beach by myself and tv just makes matters worse. I just want to sleep. The CPAP machine seems to help when I can wear it -(trauma related Healing takes a lifetime ). Why can't I feel as tired at 9pm as I feel at 9am? My nerves are on fire and my muscles ache. I worry about what tomorrow will bring. Lord I know this is not the life you have for me and sometimes that makes it even more frustrating. I am tired of this battle. What must I do to be past it? Have mercy on my mind and remove this burden or at least give me rest. You are an all powerful God and my hope rests in your grace and goodness. Help me to trust you more Lord, in all things. To trust your timing, your reasons, and your promises. Please take this loneliness away that the enemy attempts to confuse me with. I am not alone as long as I am in your arms and blessed by your goodness. Lord help me to separate emotions and reality...

                             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...

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