Truth as I see it

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...

Tears - Joy- Comfort Keep making me Thats all!

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...

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...

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...

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...

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...

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...