Saturday, July 8, 2017

Letter of pain

I sent this letter to 10 people in my life and one of them told me it inspired her to talk to her family about her pain. I am putting it on the blog hoping it may help someone in some way. Blessings

This is an open letter to the people in my life that mean the most to me. I am sharing information with you so that our relationship can grow. I am going to be real and make myself vulnerable because our relationship is important to me. I have many ailments but the hardest thing I have to deal with is chronic pain. I want to explain to you for the sole purpose of understanding what I go through.

Dealing with chronic pain is all about energy, the more pain I am in, the more energy my body sucks up to deal with it. Pain is like an energy vacuum. So when I am dealing with a lot of pain, I am left feeling as exhausted as if I ran a marathon that day, the day before and every day. When I am short or blunt with you it is because of this. I do not intend to sound callous or to hurt you. I simply do not have the energy for small talk or subtleties sometimes. I am so sorry if I have hurt you. Pain is an evil, insidious thing. It destroys everything good in life. It covers me like a black fog sometimes. I find the higher the pain level, the less of me I have to offer.

The main sources of my pain ironically may have nothing to do with my CMT disease. When you’ve got the flu, you probably feel miserable with it, every joint and muscle aches and you can barely lift yourself to bed. That is how the fibromyalgia pain is for me. I’ve been sick like that for years, not every day but more often now than ever. My hip pain is sharp like a knife and not limited to my hip. It affects my back and leg also. Hopefully that will all be corrected with surgery and PT. My ankle pain is from my CMT deformed foot and the surgery failure to correct it. Honestly if they would just take it I off I would be able to do so much more with a prosthesis than I ever did with the foot! And the ankle pain would be a distant memory. We have more mercy for animals on this planet than we do for people. If I were a wild animal surely I would have chewed my own leg off long before now.

I do not want to be miserable all of the time; in fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy”! I am merely coping. I am sounding happy and trying to look normal. Just because I manage a smile for you doesn’t mean I didn’t spend my morning in tears until the medicines kick in. Some days my feet are on fire and other days I have no feeling at all, I can’t even feel when they touch the ground. My muscles scream in pain and other days I feel like a rag doll. Of course I try to think positively but my CMT will likely never get better, I am hoping my pain can be better controlled. My doctors give me 15 pain pills a month. I manage the rest with Tylenol and anti-inflammatory around the clock . I also take anti-depressants that affect nerve pain and an anti-seizure drug that makes me dumb and lose my ability to communicate well.

When my life is being so devastatingly altered by chronic pain and illness, with not a

single facet untouched the support I receive from you my friends and family, becomes all the more essential. But, one of the many ironies of a life with chronic pain is that at the very time I need the love and support those relationships are so often challenged and affected by the same cause of that need. I cancel plans or don’t take phone calls because I hate having pain as an excuse. Recently however, a doctor told me only super heroes can take the kind of pain I live with. I don’t want to be a super hero. I just want a simple life. I want my friends back. I want to not feel like a burden emotionally to the people closest to me. I want to look forward to things in life rather than existing on memories.

Friendships and connections with family can make the difference between coping or finding myself feeling entirely misunderstood, isolated in my pain, even judged by some for it. I have done us all a great injustice by keeping quiet in the moment. In doing so I am passing up the possibility of receiving much-needed support, emotional and practical and maybe a little compassion. And you are missing out on why I seem so distant or preoccupied, It isn’t you, it’s the pain.

 I am not the person I once was or the person I want to be because of pain.

I have become short tempered, impatient, easily annoyed and sharp tongued. I may have hurt you never intending to. I have struggled with purpose for my life or more honestly a reason to withstand all of this pain and there isn’t one. Maybe it is a fruit of the Spirit to “endure affliction” but I do not think God is behind this. Sometimes I am bitter towards your “problems” wishing I had them instead of my own. But I know all struggles are hard and we don’t get to pick from a menu which ones we think we can endure.

I challenge or push you sometimes to live your life more fully because I know how awful it will be, when you have an illness or physical pain. So live it now, do that one thing now. Do the thing you won’t be able to do when illness or injury strike. Yes I feel an urgency to tell you this because life happens too quickly and living now in the moment, to it’s fullest is so important. You will never make enough money or rise high enough in your career to make up for what you could be doing with your life. Eventually everyone gets stuff but most people would never, ever, expect to have to live with daily pain.

 One of the greatest obstacles I have is not with my body but in relationships. Please don’t give up on me. I know that fun, sweet, loving, nurturing, whimsical girl is still in here she is fighting for a better life and one that hopefully includes you. I will try to be more patient and listen well, I am sorry I haven’t been. One way to make this work would be my telling you what pain level I’m in- 1 being little to none and 10 being the worst pain. So if you ask and I say 4 know that it is a pretty good day. An 8 or above I am not much good for anything.

The lessons of living in pain run deep, and “even the darkest times can be illuminated by the slenderest light.” * Prayer, music, movies, the ocean are all distractions that carry me. Cards, emails, and face book can distract me enough to get through a hard night. Sometimes you may see my focusing on you as intrusive or obsessive. It is not meant to be. It is keeping me alive. Your hopes and dreams are also mine. They are in my prayers for you and in my thoughts. I love hearing from you as often as possible. I have good days too and I really want to share them with you.

My faith and willingness to obey and serve God are what keep me here in this life. You are one of the reasons I smile. You are important to me. I love you so much and want to continue a life with you in it. Please let me hear your thoughts or questions. I am open and listening.

* Fibromyalgia facebook support group

Lord help us to endure all that we have. Amen 

#I wanted to update this post. Of the 10 people I sent this to only 4 responded. I think Pain is a hard subject for people especially people who care about you.  I understand the lack of response. It is frustrating but life is at times. It was important for me to say my truth. Maybe that is the lesson.


Tuesday, March 7, 2017


Well it happened- I finally lost it in front of my poor husband, the doctors and nurses at the clinic. No one was hearing me. I can't take much more indecision or repetitive action only to end up back at the same place. I can't be the "good girl" the "strong girl. No one listens to her!

Yep a full blown melt down just a few days after reassuring my psych doc I am doing fine- well not actually fine I told her but "I have hope things will improve".

 That's what I have lost, my hope.

My neighbor was just told she has 3-4 months and I am angry. Why can't it be me I am asking God? I am ready to be out of here. Sure there have been blessings and precious moments in the last six months but there has also been so much pain and disappointment.

I am tired of missing things , of breaking plans, of watching my life from my window like a fish in a bowl. I can't walk on the beach. I can't go see a movie, two simple quiet things I love to do and was looking forward to. Nope! Can't have it! Just more restrictions, more limits, less life.

Wow! What a complainer I am turning in to! I haven't always been this way. I am just worn down right now physically and emotionally. I have had enough needles, tests and misdiagnosis. We all get to this place it is the proverbial fall down 7 times get up 8 but I don't want to get up- that's the problem.

I will probably get there I just need a ray of hope to brighten my darkened mood. 



I am relying on you Father and I do trust you but I am weary and ready to rest. If you can help me I can do anything. I can no longer be strong enough. I am exhausted and feel very defeated. Reveal yourself to me and have the Spirit  give me strength. Help me to focus on what it is you have for me to do in this life. Amen
And then I see something like this and I know that God exists and is more powerful and loving than I will ever know. I will find Hope again.

Friday, January 27, 2017

2016 Inventory

 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 privileged to help my sweet kiwi daughter while she was in labor.
We got to have Aniya spend the night and I was in heaven.

Our first visitors were my daughter and son-in-law. I had so much fun planning the whole trip. I did research, scouted best places to stay, eat etc. It was incredible to have a purpose. It started with Thanksgiving dinner with some of our close friends and included a luau, a town party and so much more.
I scheduled the days so that I could rest in between.

My husband took them hiking. It all went by too fast but I savored every day.

I saw my daughters stress disappear more each day and to see her laughing and having fun was what I liked the most.

Something else I spent a lot of time planning was my 95-year-old father-in-law's visit and attendance at the 75th Pearl harbor commemoration. Somehow we pulled it off and had an unforgettable experience.

He even made the national news! It made me proud and strengthened my faith in this country.

It was an incredible experience to be so many WWll vets on our trip to the Arizona Memorial.
I pray our country forever cherishes their sacrifice.

I now know how and when to push myself to do things. I am setting goals and sticking to them.
 I need to participate in my life to make the painful times worth enduring. Having the scooter has made such a difference! I am so much more independent.

My sweet little Diamond continues to fill and break my heart on a regular basis. I know God is in this somehow, so I am praying my way through it. It was a hard summer with her but we seem to have good boundaries now and she is liking that better also but testing, always testing. We had a very special Christmas her first time decorating a tree and she even got a present from Grandpa.

Coloring continues to relax me and fulfills my creative desires. Lord, do you give us our passions to create? Is that another way we are like you? Is it to appreciate how extraordinary this world was created?

Had to say no to traveling back to Colorado because I am just not up for traveling. Our little 35 min in the sky trip to Oahu was so hard and I had Michael to help me. Can't realistically see that happening without him.

Both the book "Choose Joy" and  A course in Miracles have positively impacted my life this year. If I can stay focused on Jesus and the many, many blessings in my life it helps. Basically learning to be Jesus and not just quote him.

    I am keeping my Life goals from last year.

    Life Goals 2017

    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


    Father your mercies are great and new each day. I am overwhelmed by your love and grace. I pray it washes over every part of me so that my story- your story, can help even one other soul to feel your peace. I pray I become more like Jesus and learn to love fully at all times. I embrace the Holy Spirit and will yield to her guidance. Thank you, Jesus, for my life and for the lives you have brought into my journey. Amen.