Truth as I see it

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 ...

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 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 sympto...

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 k...

  My Mother had this and kept it in her bible. I had a plaque with the last verses in my house that my daughter now has. It has become a legacy to be lived and shared. I know it to be true in my life as some of my greatest triumphs have followed the darkest days. If you need encouragement copy this use it and pass it on. Healing really does take a lifetime and it can start today. Don't Quit When things go wrong, as they sometimes will, When the road you're trudging seems all uphill,   When funds are low and the debts are high, And you want to smile but you have to sigh, When care is pressing you down a bit, Rest if you must, but don't you quit. Life is queer with its twists and turns, As every one of us sometimes learns, And many a failure turns about, When he might have won if he'd stuck it out. Don't give up, though the pace seems slow - You may succeed with another blow. Often the goal is nearer than It seems to a ...

Lord it has been a rough week so much pain so much weakness hard to put my head in a good place. You have put great people in my life who are encouraging me including a friend who suggested I get a book on tape and it has arrived so I plan to start listening to it. Is called the Power of positive thinking by Dr. Norman Vincent Peale. I saw a movie made about him and it really spoke to my heart. It is mostly about you God and being sure of who you are. How to rid yourself of self-doubt and free yourself from worries stress and resentment which are all things I am obviously working on. I do believe that you love me and some day's, that's enough. If I don't write because of the pain and then I just have to realize that even writing just a little bit is better than not getting my thoughts down at all. Sometimes I have to change my idea what my blog has to include it doesn't have to be fluffy or nice or pretty it just needs to be real in this week this is all I have to off...

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...

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...

Today I am thinking about the book my daughter told suggested to me   "One Thousand Gifts " and how much it helped change my attitude at the time. Lately I have had a hard time expressing gratitude but I truly am grateful for so much. We have a solid roof over us, plenty of food and a nice car I love to drive. We live in the most beautiful place on earth and I am constantly reminded of Gods grace and power in my life. I have an awesome family and lots of love. Depression is one of the most common complications of chronic illness. It's estimated that up to one-third of people with a serious medical condition have symptoms of depression.I certainly struggle though I have come to a place of acceptance with my physical illness's CMT, fibromyalgia and interstitial cystitis. It is simpler than I thought it could ever be mostly because I have been willing to seek God in this and have let go of some anger, frustration, and disappointment. I also have an excellent ...

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...

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...