Truth as I see it

You alone can create such beauty! Why do you continue to be silent in answering my prayers for healing? I go in to have a mole checked on my back and the Doctor says,"it is fine but....." this one on your arm I can biopsy and burn. The pre-cancer on your face needs to be treated and I will biopsy the skin near your eyebrows". WHAT?????!!!!!! Wait, I came in about my back! If you have many health issues and deal with anxiety an unexpected issue can throw you in to a spin. I felt myself floating above my body as I was signing papers and being injected with lidocaine. The smell of burning flesh is nauseating. My mind is full speed with what ifing. Something is said about going to the ENT docs to have the removal of the spot in the center of my face, like a bullseye. I recall something called MOHS from when I had the Basal cell on my shoulder. I tell her I will get back to her and leave with a bandaid and wounded wings like when a bird trys to escape the cage. ...

 I pour myself out on this blog and talk about my journey and I do not want to duplicate my posts so let me just say I am continuing to try and improve my health and am serious about my weight loss. I am in a weight transitions class and am using an app on my phone that makes keeping track of what I eat super easy. I am using alternative forms of medication for my pain and it is helping so much. I am using my scooter much more if I can or my walker when I can't.  I was able to visit one of the places where I have been the happiest and carefree and it was like a big warm hug. Reconnecting with a sweet friend was so much fun. You can go back and feel the love again. Missing people I love comes daily but I am choosing to focus on the amazing things they are doing with their lives.  My love is strong enough to span any distance. My prayers are continuous. Lord, there were so many blessings last year and I am truly grateful for each one. On September 25th I was pr...

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...

" 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...

After reading  Choose Joy I came up with some life goals. I want to be living intentionally and present, seeking God's will always and taking care of myself as much as possible. I want the people in my life to know that they are loved and also anyone I come in contact with. I think these goals are a good start. I want to; 1.  Be known as a woman of strong faith  2.  Walk the path God leads me down with courage and determination 3.  Appreciate all of my life and the many incredible blessings 4.  Love God, Love others- unconditionally 5.  Choose joy over anxiety 6.  Make healthy choices 7.  Be an encourager, Always speak the truth in love 8.  Forgive everyone including myself 9.  Ask for help when I need it 10. Be my own advocate with doctors Psalm 94:18-19 New International Version (NIV) 18  When I said, “My foot is slipping,”      your unfailing love, Lord , supported me. 19...

    I found this great list of Mothers day ideas and wanted to share it with you. Help the people in your life learn how to help you. This is from my friend Kim and her site is Grace is Sufficient 10 Great Mother’s Day Gifts for the Chronically Ill Woman E ach year my husband and kids ask what I would like for Mother’s Day. To be honest, they usually come up with the best gifts all on their own. Here are a few great things I’ve either received or would like. I bet you can relate! Here are 10 Great Mother’s Day Gifts for the Chronically Ill Woman A slow cooker with a few ready to go freezer meals for those day’s you’re not feeling well. Having a ready to go meal in the freezer that just needs dumped in a crock pot can truly help on those days when you’re not up to cooking. A pillow for the bathtub. Hot water therapy is recommended for a number of chronic illnesses and chronic pain conditions. Why not have a tub pillow to allow y...

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...

Read the article and let me know what you think- Written by Anne Patchett Finding Joy in My Father's Death  This is my opinion- Honesty - so refreshing. I get it. I worked hospice as a nurse for many years and I have had a father almost die several times, when he actually did die it was a comfort to know he was free from pain. I have also taken care of a beloved aunt doing what I could to make sure she died in her own bed the way she wanted to. And I have mostly felt accomplished, relieved and joy. Yes joy because I do believe in God and I know this is not the final destination. I now face many health problems of my own and have had several real conversations with my family on what is NOT to happen if I should be unable to speak for myself. Death is simply a transition and often the end of suffering as it was with her father.  My husband plans on being happy for me whenever I go and it makes me smile! Lord help us to know that death however it may come is the...

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...

I have finished the third chapter of my trauma story it is a good feeling to have it done. I am not sure why the spirit pushed me to do it but I feel a great sense of peace now. If you have not read the first two chapters go here- http://healingtakesalifetime.blogspot.com/…/my-trauma-story… The third part to the story can be found here- http://healingtakesalifetime.blogspot.com/…/part-iii-of-my-… Thanks.

Tears - Joy- Comfort Keep making me Thats all!

Last week was one of the best we have had since we came here. My energy level was high we did a  lot of fun things including seeing turtles surfing in the waves! It will be one of my favorites ever but this week has brought pain and weakness and financial worries. When I was able to work as a nurse I made really good money and it is so frustrating to me that I can no longer contribute financially. I feel guilty, frustrated and overwhelmed as always.   I know all my husband really wants is for me to be happy and enjoy as much of life as I can. So why do I fall back in to being angry. The enemy has a stronghold here in my life and I earnestly praying against it. I need to stay positive and keep counting my blessings. I need to have faith in God to improve our finances. I need to take a day off and physically rest when I need to. The enemy has stolen enough from me in my life I am making it my Job to see he doesn't get any more! If you can think of any scripture or quotes...

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...

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...

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...

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...