Wednesday, December 30, 2015

To keep or not to keep?

Had a very interesting experience last night. After seeing a podiatrist about my ankle we saw a man waiting for a cab with his foot wrapped and he looked discouraged. He asked us for a ride to the other medical facility 1/2 mile away, that seems so far when your unable to move yourself. It took us less than 5 minutes to take him. Turns out he was injured riding a motorcycle and it almost severed his foot. Here I am fighting for an amputation and he is fighting to save his foot. I know the issues don't line up but the thread of having a foot that doesn't work do.We both want to be pain free and as mobile as possible. I almost felt guilty for my perspective but reminded myself that he has not been dealing with this pain and foot issue for very long. Mine has been 25 years now. Not as bad as it currently is but repeated attempts to "fix" it have failed. I long for the day it is not attached to my body and other CMT'ers speak the same and are encouraging." It isn't a simple fix"my doctor said, "but it would improve your lifestyle and outlook." I am ready but I think we are probably a year from actually getting it done, we'll see.
Until then I just got an ambulation scooter and already feel 10 feet tall because I am independent! I can get the mail, ride through the complex or across the street to the beach I am freer than I have been in 7 years. I am so excited. We are also going to try steroid a injection. I am kind of like the tin man and all of mu joints need oil!

Lord thank you for your patience with me and for providing the finances to get a scooter. I am independent and stubborn and that has kept me going along with my faith in you. I pray to always know you will work things out according to your purpose.  Father I also pray for others who are struggling with loss and physical pain. It is only for a short time this life on earth and then we are free of our pysical bodies forever. Help us to hold on. Amen.

Wednesday, December 16, 2015

repost from last year-

Merry Christmas everyone!!!!!!!!!!!


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 more light hearted and hopeful. I usually am like that until my plate just gets too full of medical issues or pain. One Nurse Practitioner I used to have told me "you can handle it just get a bigger plate!".

As we celebrate the season reach out to those that may be alone or without family this year. My mother always included so many people in our holidays which I hope passed down to my kids and I am thinking warm thoughts of her even now. I miss her at the holidays the most I think. I am glad she pushed me in the ways that she did and tried to always make me feel special not broken. I am rambling because my head fills with so many memories this time of year. Most of them are precious. Health and happiness to all of you this Christmas!


Lord we celebrate you and all of your glory. Instill in each of us the desire to bring peace in to the world. Let others see something different in us and let that be you. Keep our eyes open to someone who might need a kind word or something more. In this season of giving let us give you Lord in our actions and attitudes and in the way we speak to others. Lord let your light shine brightly. Amen!

Wednesday, December 2, 2015

Kindness and compassion

Today was a genuinely rare showing of kindness and compassion from  my ortho doc here concerning my hip also my well being and quality of life. We talked for 15 mins and came up with a plan that gives me a sense of relief and tiny bit of hope. When a doctor can take just a few minutes with a person to brainstorm and answer questions it can take away so much anxiety, it has changed my whole outlook! I feel cared for, validated and important. I also felt heard which is so precious to me. This was a really great thing for me right now.

Thank you Lord for giving me the ability to discuss my situation with my doctor and for keeping me unemotional so that I could speak clearly. Thank you for bringing this doctor in to my life. I pray for your continued guidance and provision for my needs. Amen