Thursday, December 15, 2016

Re-posting

Don't let anyone steal your joy!

MELE KALIKIMAKA! 

MERRY CHRISTMAS!
Been working on Christmas and my other blog because I am waiting to share my story here until after Christmas. I do not want to steal any one's joy. Joy stealer's are everywhere, invitations, family, commitments, being over budget and over booked. This is not the celebration of Christs birth. It is Commercial Christmas. Christ's birth should be a  special time of year not one to busy yourself out of the joy. The enemy comes to steal your joy and busyness is one method he uses, don't let him. Pick and choose what you want to experience and know that the people who truly love and support you will understand if your focus changes. It's about the birth of our savior and it is really His birthday party, don't spoil it.

I love everything about this holiday and try to absorb as much of it as I can. I stay away from things that might trigger me and I use all of my coping skills. Really wish I could fall asleep easier. Praying for that. In some ways my CMT has always caused me to pick the most important things on the list to get done and that has been a blessing.


My husband usually makes the yummiest caramels from an old family recipe and we send them to everyone. This year that isn't possible so we sent everyone Hawaiian calendars instead - done and feeling good about it. Still hoping he will make some for us and the neighbors etc. Bottom line we want to keep Jesus in Christmas so handing out caramels with a Jesus Christmas card to our grouchy neighbors might help them to see us differently- I am hoping.

Painted-by the creator- Painted Bark Eucalyptus trees in Hana
What are you doing to take care of yourself during the holidays? Never occurred to you? Well start now! remember you are like an injured bird learning how to fly again. Avoid family members who cause you to shut down. Christmas is not about them and do not let anyone shame you in to doing something that threatens your healing. Toxic people only add to your PTSD or can make chronic illness flare.

 Stay focused on Jesus. He desires relationship with you and He wants to help you heal. Stop putting on the fake "everything is ok" smile and be real. Just read this article from Healthy Place you might find helpful. If this time of year is part of your trauma protect your heart and mind but do not shut Jesus out. 
Pray. Love. Sing. Marvel at His creation. Celebrate.
This is a time of Joy and that Joy brings Him happiness. 
Celebrate Jesus!



 Jesus help me to honor you especially at this time of year. Help me to focus on the miracle of your birth and the fulfillment of prophecy. Bind the enemy from stealing my joy. Help me to take care of myself and to push the darkness away. Emmanuel- God is with us! I do love you so and I thank you for my life and for healing. You are truly a God of compassion and mercy. Amen.
12/15/16 I also want to add there is a book I have read called "The only little prayer you need". It is changing my life. It does not replace my bible but it is helping me to control my anxiety. Something I am doing to feel healthier.
Merry Christmas!

Wednesday, November 30, 2016

Truth as I see it: Sometimes it's hard to be thankful

Truth as I see it: Sometimes it's hard to be thankful: 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 ...

Wednesday, November 23, 2016

Sometimes it's hard to be thankful


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 this year.


Everyday this week I am making parts of the Thanksgiving feast to use my spoons wisely. A practice I first resisted but have come to love, I realized my family and friends want to spend time with me healthy and with little pain much more than they want a perfect dinner with handmade seating cards or fancy centerpieces. Letting go of all that stuff frees me to rest and be present, at least that is my goal.  It also allows others to add their perfect touch!




So whether you have a chronic illness or not lets all try to be more thankful for the important things from now on!

Father you alone are enough to be thankful for. Help us everyday to lean on you and to truly be grateful for all that we have. Encourage us with unexpected blessings and may we offer all that we have to you for your glory! Amen.

Monday, September 12, 2016

Awareness 2016

                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 tempting but I still resist. Stretching all I can within my limitations.

My day is filled with weird zaps and zings in my arms and legs. Evidence of nerves trying to work in spite of CMT. Sometimes I have cramps in my hands so bad I can't straighten them.There is also plenty of numbness. Just yesterday I saw part of my toe nail on the floor and do not know how I hit it hard enough to break it off and never felt a thing. I jammed my toe once and the doctors had an awful time trying to fix it. I kept telling them to pull harder because it didn't hurt they were reluctant but finally listened. I have peripheral neuropathy.That sums it up, the parts of my body that are not numb, hurt.

Progressive is a doom and gloom sort of word but we are all progressing towards an older version of ourselves. I try to stay focused on today keeping tomorrow only in the back of my mind. Progressive for me means continued loss. I am realistic living on the ground floor, having a scooter etc. What can I do today to feed my soul and my mind? How do I get there? Nothing is simple. Planning is a huge part of my life. Difficult for a once spontaneous person.

Frustration is a common partner on this journey. My biggest one right now is that I can not walk on the beach. That has been my fantasy for so many years to just walk on the beach and grow old- progress. I will not let my inabilities define me though and we are working on creative ways to achieve my goal. Even if I could just stand there and get my feet wet I would be happy.


Hope. There is a tremendous amount of research going on and one drug is going to clinical trials! I have often said if I knew I would never get worse than I am, it would change my life. How about taking it a little farther and saying what if I regained muscle use! Do I dare to hope? Anything that would stop progression and possible loss of breathing would be incredible. I choose hope.

  I have so many brothers and sisters with CMT. 1 in 2,500 worldwide. I am in a few online support groups and live with an incredibly supportive husband. I am blessed.


This is only one piece of my burden but since it is CMT awareness month we will stop there.

There are three different organizations you can contribute to if you would like to-Muscular Dystrophy Association -MDA, Hereditary Neuropathy Foundation - HNF or Charcot Marie Tooth Association CMTA.


More importantly tell someone about CMT. Thousands of people are not diagnosed and with treatment on the horizon it is critical. 

Thank you.


Lord I pray for all of us in pain today. Continue to comfort and guide us. Praying for miracles and soon. I praise you and all that you are. Amen.




Thursday, August 4, 2016

Happy birthday to my friend Christine Miserando! So sorry you were in the hospital- wait you were in the hospital on your original birth day too! Thank you for all of the knowledge and power you have brought in to my life. My days are infinitely better because of "The Spoon Theory!".
Spoon Theory
Wishing you love and sunny days for this year. You are a special one!
Check out more on fb- ButYouDontLookSick.com



Saturday, June 25, 2016

Pain pain go away.....

"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 through the day with the clock ticking and pain screaming inside my body. I do not pretend to understand this. I only know I have to survive it. I have been here before but it does not get any easier. Overwhelmed  is a post describing this.



I will surround myself in music today. I will hold on. I will pray for release from this suffering. I will be confident that heaven holds no pain for me and know that God is bigger than all of this. I will read scripture and believe. It is all I have.
                                                          

                                                     I need you now



Father I need you, I have so little left to give. The pain is too much for me. I desire to feel your spirit here with me in the midst of all of this pain. Please Father have the shot help me. I am fighting  the enemy and he is so strong. I believe in you Lord I do. Amen.

Update- I have been relieved of 90% of the 10+ pain since my cortisone shot on Tuesday. I am grateful but I am still struggling with why is the suffering necessary? I was hesitant to even write this post hoping my pain would go away but sometimes when I am in the deepest darkest places I know in my heart someone else is also. I want that person to know they are not alone. I want to spread hope. I want to find answers/ treatment/ideas of how to survive what ever illness people have. I would love to hear from you if you are out there. Please comment and subscribe to my page if it works for you.
Thanks.


 

Saturday, May 7, 2016

Life Goals

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 94:18-19New International Version (NIV)

18 When I said, “My foot is slipping,”
    your unfailing love, Lord, supported me.
19 When anxiety was great within me,
    your consolation brought me joy. 
 

 

What are your life goals? How do you meet those goals? How do they make your life better? Let me hear from you.
 

   Lord I am in such awe of the ways you have healed me. I long for the day I am free from this body and physically present with you in heaven. I desire your will in my life and want so much to serve you. Help me Lord to find what it is you have for me. Help me Jesus to endure the physical pain and progressive loss I have in this body.  Give me encouragement and continue to bless my family. I love you. Amen. 

Monday, April 18, 2016

Done being strong

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 like these and as a child I locked in to being "a good girl, a good patient and strong". It made me feel really good when the doctors bragged to the interns about me and how "brave" I was. I must be doing a good job my little person would think.

Today I am exhausted. I just found out the skin cancer surgery I had 2 weeks ago, did not get clean  margins so we have scheduled another procedure. Am I supposed to let them continue slicing on me forever? I was not at all prepared for the six inch incision they have already made on my shoulder. I get the stitches out in a few days and then in a week they cut in to me again. Basal cell is not usually life threatening. It can cause problems and I could have more lesions break through but how far do we take this? Seriously?

My therapist asked me how I felt when I was first diagnosed. I told her the truth. I told her my first reaction was "maybe this is my ticket out of here". She is not a believer so she did not understand, We will all get a ticket and when it comes what a glorious day that will be. She  told me I am passively suicidal. I am not. Suicide is not an option. I would never again try to play God and take my own life. I am here and committed to serving Him as best I can with what He gives me. This body of mine is a shell and a broken diseased one. I look forward to the day I am rid of it. I am blessed to know that this is not the end. I will have eternity to dance with Jesus and to have "no more pain, no more sorrow"-there will no longer be any sorrow, or crying, or pain; the first things have passed away.-Rev 21:4.

I am blessed to have an amazing man in my life who is telling me I don't have to be strong and I have an amazing relationship with my savior who is also telling me (I think) that I don't have to be strong.
I am pretty much done being strong. It has such negative connotations for me.
I am resilient. I am learning to give up  my idea's of how my life is going to be and like the palm trees that bend in the wind here, yield to God's plan . He is in control anyway. Part of being resilient is taking time to recharge and process. That's what I am  doing now.

The following is Sara Frankl's list of goals from the book Choose Joy-

Life Goals
1. To not be ashamed to stand before God.
2. To fulfill God's plan by living the best life I can with what I am given.
3. To be aware and present in every moment.
4. To love what I have and not yearn for what I lack.
5. To spread the joy, not the fear.  
6. To be intentional in all things. 

Father, help me to adopt these goals also and any other ones you want me to have. I have always thought of goals as a list of things I needed to achieve. I love that this is a list to live by. This is truly trusting and believing you are my God and love me. I do believe. I am so grateful. Amen. 

Update-The second surgery was successful and I am free of skin cancer. It ended up being stage 2 because of the size and depth but it's all good now. On to healing!  

I also have a cd of songes that speak to my heart and encourage me-


                                            The Soundtrack of my Journey

Better Place               2:56    Rachel Platten           Wildfire         

Good Fight (Acoustic)                       3:20    Unspoken      

Footprints In the Sand                     4:07    Leona Lewis   Spirit (Deluxe Version)
I Look to You              4:25    Whitney Houston      I Look to You 
Love Does                   3:51    Brandon Heath          Blue Mountain          
The Climb                              Miley Cyrus    Hannah Montana: The Movie
Tell Your Heart to Beat Again 3:54 Danny Gokey Hope in Front of Me 
Stand By You             3:39    Rachel Platten           Wildfire         
Stronger (What Doesn't Kill You)   3:42    Kelly Clarkson           Stronger
The Truth Is Who You Are   4:26    Tenth Avenue North -The Light Meets the Dark  
Live Like That                        3:57    Sidewalk Prophets    Live Like That           
My Hope Is You (Live)          4:52    Third Day       Offerings: A Worship Album           
Roar                3:44                   Katy Perry  PRISM (Deluxe Version)     
There Will Be a Day              4:44    Jeremy Camp There Will Be a Day - Single           
Wild Child (with Grace Potter)3:10            Kenny Chesney         The Big Revival         
Overcomer     3:44    Mandisa         Overcomer (Deluxe Edition)          
I Will Lift My Eyes     4:26 Bebo Norman   Between the Dreaming
My Hope Is You (Live)   4:52           Third Day       Offerings: A Worship Album           
Keep Making Me                   3:22    Sidewalk Prophets    Live Like That           
Tunnel            4:19    Third Day       Wherever You Are   
Save My Life              3:45    Sidewalk Prophets    Live Like That           
You Are More                        3:37    Tenth Avenue North The Light Meets the Dark   
Need You Now (How Many Times) 4:12    Plumb Need You Now          
By the Grace of God  4:27    Katy Perry     PRISM (Deluxe Version)     
Fight Song                  3:24     Rachel Platten          Wildfire         
Let It Go                      3:45    Idina Menzel  Frozen (Original Motion Picture
           
 

Sunday, March 27, 2016

Choose Joy

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 symptom or unrelated illness pops in and takes you to a place worse than your previous worse thing. How do you survive?

The most important way (along side all of my coping tools, lol ) I know is surrender. Not to the disease but to God and to rest in His arms. I can't do this without Him. That is how I am inspired by the first chapter of Choose Joy.

Wednesday, February 17, 2016

Pain control

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 kind of pain Lord. Please either fix it or take me. I am done. Amen 

Brandon Heath Love Does

2/18/2016
Sometimes when God answers my prayers like he did yesterday I get goosebumps! I prayed that my husband could be here for my doctor phone appointment and he got to work 2 hours and they sent him home due to wind! He was such a big help talking to the doctor and we came up with a plan that looks encouraging to me. A strong reminder of why it is important to pray. God wants us to rely on him and be confident of his actions. I really believe this. I have seen it many times.

Lord I am praising you for such a quick answer to my prayers. Help me to be patient when the answer is unclear or seems out of reach. You are so much bigger than I can imagine. I am grateful and humbled by your Grace and your Love. Amen.

 * Been using a TENS unit for the hip pain and it worked really well.3/6/16
            


Tuesday, January 26, 2016

Grace is Sufficient - Making Decisions

Such an excellent post by my friend Kim at Grace is Sufficient Making decisions. I printed this nugget and will put it in my office to be a reminder. Yesterday was one of those valley days for me and if I had been pressed to make a decision it would not have been a good one. Sometimes we just need to ask for time and we need to pray. Prayer always helps to calm me and remind me I have a God that is greater than my pain and my bad day. He will work all things out for His glory!
Kim is also doing a book club on "Choose Joy" written by Sarah Frankl - a christian woman with chronic illnes and Mary Carvers. I have never done a book club before but after reading her posts I am getting the book.

Father you are amazing how you use others to give us your blessings. I want to lift Kim up to you today and ask to ease her burden and give her rest. She is such a precious friend to me and I appreciates that she uses some of her valuable time to reach out to others. Lord let this post this blog reach those who need you most in their daily struggles to stay afloat. I love you Lord. Amen.

Monday, January 25, 2016

2015 Inventory



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.



The highlight of my year was going to Colorado for my daughters graduation from DU. I had some great family time and fun events. I started using my ambulation chair there and it wasn't as bad as I had thought it would be. I got to do more things because of it. I actually didn't even mind it by the time my visit was over.


We got stuck in downpours, ate ice cream, went to the museum and Brayden made me a monkey that sings "Take me out to the ball game". I hug it when I miss him which is often.

Spent a lot of time with my brothers and sister-in -law who have been a constant source of support in my life. Got to go to my favorite amusement park with all of the kids!

I also Slayed the dragon while I was there and it was so empowering!   

   Spent some real quality time with my son and dauther-in-law so sweet.
                                          

 Year in Review
*Through no fault of my own I have gained 20 lbs and it was all because of my under active thyroid!  I only expect to feel that weak and lifeless again when I die. Check out- The ups and downs of Thyroid Having my thyroid/adrenal system crash was intense. We are still not quite right with the dosage but definitely feeling like I can make it now.

*Got my scooter and it turned my world in to accessible! So glad I have it. The post To scoot or not to scoot  I talk about the decision making. Bottom line is I am a stubborn independent woman and being able to do what I want or go where I want to has changed my attitude so much! Kolo trained to ride by my feet in one outing!We are quite the sight.

*Been working on discernment and keeping crazy people at an arms reach. I like helping people who really want to be helped but not those who just want to complain and be unaccountable for their actions. Had too many of those people in my past.

*Love our new place we moved in to in August. Feels like home. Pool is so pretty and the landscaping is like a resort.

*Joined a board game club on the Meet Up site and I push myself to learn new games. I really have fun.

*No more PT for me. Some of things we were doing made things worse. Frustrating news from the Ortho doc -no uneven ground like the beach because it could cause my bones to break. I cried, then I went out on the scooter and got close to the water and it made me feel better. Forming an idea to get a sled and have Michael pull me to the flat part of the beach. Persistent!

*Made some new friends and met some neighbors. Love it when Tatiana brings the baby over. Aniya is so beautiful and smart.

*I have had the pleasure of watching my daughter fall in love with a man that seems to be incredible. She has faced her fears and moved to a place she loves to start her practice in animal assisted therapy.We have grown much closer even though we are miles a part.

 *I am replacing worrying with faith in God and I am much happier. Accepting my limitations takes away a lot of stress. Trying to stay focused on what I can do or be creative in making a situation work. I touch on this in my post Time for a cane.

*I have gotten close to some other bloggers and it feels like a good community of women. Sharing feedback and learning from each gives me depth as a writer. I am grateful for the internet and the support it brings. I even received a Blogger of the year nomination!

*After swearing off NFL football when Tebow was let go from the Bronco's I find myself watching and getting excited to see them make it
to Super Bowl 50.

*Already been on 3 whale watch's this season and am scheduled for one on my birthday this week and saw the Whales in 3D in Colorado with my sweet daughter.





*One my favorite things on Maui this year was finding these Green Sea Turtles!

*Still volunteering just trying to figure out how to make it work best for me.


Looking Ahead
I am very excited that my niece Theresa is publishing her book soon! Excited for her and hoping she will write our story next.
I want to look in to volunteering at the hospital to work with kids.Kind of completing the circle.
For my complete story go to My Trauma Story.

I am learning about the essential oils my daughter sent me, like frankincense helps me sleep.
I want to cook new dishes. Try new foods.
Hoping someone will come visit I do miss them even more than I expected to. If I ever doubt purpose in my life looking at this post will remind when I push through the hard days I find joy on the other side!

Father thank you for my life. It has been a bumpy road but you have always been there to ease my pain, comfort and guide me.  I am grateful for all of the answered prayers even when it has been "no" or my least favorite "wait". I feel so blessed to have my friends and family and my visit with many of them this year. You are my source of joy and grace, I am so grateful. I pray that wherever this journey may take me I will seek your will and follow it. Protect my marriage and my children's marriages from indifference, I pray that you continue to be the guiding light in their lives. Jesus if it is your will have my story help others, it is your story to do what you will with it in your timing. Amen.



Sunday, January 10, 2016

Cross + Posting

Shine On!


Can I make a blog post centered around a sweet picture and quote? You betcha! I have had my experiences with spiritual warfare from horrendous times to small daily trip ups. The battle can seem unwinnable but the battle belongs to the Lord and keeping my faith focused on him keeps me strong and centered. I have certain prayers I use repeatedly and some scripture memorized which help. Mostly I just start talking to Him and laying my burdens down for Him to take care of, I also stay focused on knowing that I can get through anything the enemy throws at me when I am close to God. I know the end of the story and it is beautiful. see more Healing takes a lifetime
Shine On!