Living One Spoon At A Time

Most people have no idea what true fatigue is. I thought I did until I was faced with acute and chronic pain, fibromyalgia and chronic fatigue syndrome after a serious back injury.

Fatigue is like the elephant in the room. It's always there zapping my energy, it's like a silent leech. I type this as a healthy outlet for myself and to give hope to others.

I'm grateful for my faith in God, my Doctors, my family, my positive optimistic disposition, my amazing friends (new & old) and supportive colleagues. I'm also grateful for alternative therapies such as physical therapy, acupuncture (HUGE help), CBD oils, magnesium and the many alternative modalities I've encountered in the last two years. 

Today was a difficult morning for me, so I decided to live one spoon at a time. Sometimes you just have to put one foot in front of the other.

Journaling and reflection has proved a VERY healthy outlet for me too. I can remember in the beginning (when my sacrum was collapsing, I had a hematoma and newly herniated discs and one painful disc extrusion) that I was in so much pain that I couldn't even formulate written phrases. So I gave myself permission to celebrate what I could and couldn't do....I made a good 'ol fashioned list. I drew a line down the paper and I put "I can" in one column and on the other column I put "I can't". I gave myself permission to celebrate what I could do (including get mad or cry) and I wrote basic things. You see at that time I literally couldn't put my underwear on. I had to use a dressing stick.  Although that was hard to admit, it allowed me to accept where I was and now it allows me to celebrate how far I've come.

The biggest challenge is that although I don't look sick, I have several chronic conditions. Most days I do my best to push through it, but it wears on you. 

Why the spoons you ask?  Well Christine Miserandino came up with a great theory, called "The Spoon Theory".  Here is a wonderful article on what it's like to experience a chronic condition which explains "The Spoon Theory". Thanks for reading!

Have an aloha filled day!

It's Back

On Good Friday I spent half of my day in the emergency room. One of my spinal epidural steroid injection sites got infected with cellulitis. That was 11 months ago.  I missed Easter and spent all weekend in bed.

Alas, here I sit with the same infection at the same site, maybe 4mm shifted. It's now Monday and I'm back in the E.R. on my third type of IV antibiotics. I'm fearful yet I have moments of calm. I'm waiting for a contrast MRI to make sure there isn't infection in my limb or spine.

I'm so tired of being in pain everyday I could puke. I don't know why God continues to allow all of these painful and expensive things to happen in my life.  I don't get it, but I trust Him. 💓 💓 💓  I can say that I've learned to ask for help, that it's ok to say no without explination. I've learned who my friends are. I've seen God sustain me when I know I can't get out of bed. I've experienced grace and mercy here on earth. I've seen the good in people.  I've seen people be insensitive and judgemental.

Most of all I cling to this verse, hoping God wI'll usee me.

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

Romans 8:18 NIV

http://bible.com/111/rom.8.18.NIV

Cultivate Gratitude

Over the past week I have been encountering many situations that require perspective, prayer and reflection.  When we widen our lens and view in life and consider the fact that we have a say in how our day goes.  We have a say in how we react to what occurs throughout our day.  We have an opportunity every morning when we wake up to say I choose to be happy. I choose to make tomorrow a great day.  Stress is merely a perception.

Personally, scholarly, financially, relational lyrics, healthwise and professionally I have had some crazy days lately, but yesterday I took a walk when I was feeling like a teapot that was about to whistle.  I sat down, grabbed my cell phone and looked up positive quotes on Pintrest. I took some deep breaths in and out and I thought about basic things that God has provided me with. Food, shelter, clean water, a job, family and friends who love me.  I struggle with anxiety and depression, but this week has been a tough one and I lost my sunshine a little bit. However; I'm a from believer in putting on the right bandaids to cope until you don't need them anymore. Do what you love! Color, go for a bike ride, do yoga, journal, call a friend or ask a friend to go on a walk with you.

Life is full of ebb and flow. No one ever said it would be perfect. There are so many things going on globally, nationally and locally. If we focus on all of the negativity the media feeds us, it is easy to get bogged down. Seek balance.

I challenge you to put on the bandaids. Seek balance. Make time for you and practice self love, it is not selfish to take care of yourself spiritually, physically, and emotionally.  Find your constants. Constants are things you choose for you like every day I will ____________(fill in the blank).  

Hugs & Aloha,

Pineapple Jenny

Suffering in Silence....The Journey to Me Again

This past few years have been the most challenging of my entire life.  I have had one thing after another happen in life. Mostly health challenges cause by not taking care of myself.  I was (am) very depressed and hiding it and I neglected myself in every way. Nutritionally, spiritually, financially, relationally, emotionally and physically. The result of my actions or lack thereof resulted in a knee injury, a painful emergency appendectomy, and then the grand daddy of 'em all my back injury in May of 2014. Since that day I hurt my back I have not faced one day without pain, inflammation, challenge and emotional pain.  Almost a year ago, I was officially diagnosed with chronic pain (DUH!), fibromyalgia and chronic fatigue syndrome.

God literally had to put me flat on my back for months in order for me to slow down and listen to HIM.  I would practically crawl to work and come home to crawl into my bed I was in that much pain.  My PM&R doctor (who sees patients all day that are in extreme pain) told me that I have a really high pain tolerance.  I withdrew from social activities because I literally could not muster the energy to do regular tasks.  I was in a new job and I am blessed to still have it.  I withdrew from friends because I did not want to complain or bring them down.

I decided to fight based on many circumstances in my life. I have learned so much from this season.  I've learned my short comings, my strengths and that I am not super woman (dangit!). I've learned that I cannot count on many people, but that it's important to ask for help.  It is ok to say that you "have plans" or say "no" and not give a reason why.  Achieving balance is so important when facing a chronic illness or auto-immune disease.  I am a helper by nature and a people person so I like to help others.  Through all of this I have realized things I knew in my head, but I do not think I knew at my core in my heart.  I know now that you must first love yourself enough and take care of yourself so that you can fully love and help others.  

I found an amazing supportive community online, MyFibroTeam full of others who face chronic debilitating, life-changing pain every day like I do.  They even have an app too!  This community has served as a wonderful outlet for a plethora of resources.  There is space to ask questions, understand what others face, celebrate victories and share tough days with people who truly understand and do not consider you a complainer or a whiner.  I am a sunshiny person who always looks for the silver lining, but this has really affected my entire life and sometimes it is VERY difficult to even get out of bed due to the fatigue and pain I face everyday.  The most challenging part of many chronic illnesses (such as mine) is that we "do not look sick".  Please let me advise you to NEVER, EVER, EVERRRRRRR say such words like this.  Or things like "just drink an energy drink" as they are very disheartening for the warrior fighting just to do simple things like get out of bed and shower.  I ask that you read this quick story about a day in the life of a chronic condition sufferer written by Christine Miserandino called "The Spoon Theory".  Thus the term spoonie was born for those who suffer from chronic pain or a chronic condition.  A medical doctor of a fellow "spoonie" said that it would take a normal person staying up for three days straight without any caffeine to even begin comprehend (not fully understand) the amount of fatigue of someone with chronic fatigue or fibromyalgia.  

Most days I smile through the pain and I can fake it, till I make it.  Often times I cannot do this though as I literally wear my pain on my face and my heart on my sleeve, although I try not to.  Many have asked how I am and how my back injury and healing journey is going so I decided it would be healthy for me to put my journey to words.  My only hope is that I can provide one small glimpse to others who do not face chronic pain or chronic health conditions into just how challenging it is and encourage those who do face chronic conditions to press onward.  I know that others have it MUCH worse than I do and I realize that and I am grateful for that everyday (almost, everyday).  

What I have learned and lived the most in the two years is that it is ok to ask for help. It takes a stronger person to admit that they need help.  I learned that I am very stubborn and hate asking for help. I like helping others and myself.  When my back pain and mobility was so limited I could not even do basic things like put on my chonies, take out the trash and tie my shoes.....I mean come on people!  A 30-something year old should not have to use a dressing stick!?  I learned humility is one of the hardest things to have and gain.  I was honored to have a Pops (my dad) who would come over on his way to or from work to scoop the kitty box, take out trash, take my laundry home to have mom wash it and help me with whatever else I needed.  I was blessed to have a Mama who would wash my laundry for me, help me with basic tasks like grocery shopping and even rent a dressing stick and pick up stick so I could care for myself.  Let me tell you being single and all alone is more apparent when you are literally stuck in bed in so much pain that you cannot even think straight.  I swear my tears were even crying ha-ha.  Through this time I almost lost my job (a new job that I had only a couple weeks when my injury occurred), I have lost friends, gained copious amounts of medical debt.  All of these setbacks never prepared me for what I would and am still learning.......That is that God was trying to teach me much more than humility and to slow down and completely trust HIM with all things big things AND small things!  

I had a wonderful physical therapist and team who helped me seek holistic ways to reduce my pain.  I began with simple stretches as my mobility and range of motion were not great.  I was very out of shape, especially in my core.  I have a wonderful Naturopathic MD that I see and he helped me through a lot of this.  Even my spine doctor would praise the things he had me doing proactively to try to combat the pain, FMS and CFS.

What worked for me may not work for others, but I know for me it was a trial and error process. I did everything that I could and tried everything that I could to gain wellness, or as close to it as I can.  I did all of my physical therapy homework which mostly consisted of core-work and stretches.  I began an anti-inflammatory eating plan and incorporated Herbalife into my nutrition.  I also incorporated doTERRA certified therapeutic grade essential oils into my daily lifestyle.  I miss the things I used to love like cycling, running, swing dancing (lindy hop) and much more, but I am finding comfort and pain relief from yoga!  So I am grateful for what I can do.  I also have a beach cruiser bike that I can ride now.

I have had days where I feel great and then the next day (or even the same day) I feel awful.  So I have to really live by the spoon theory, rely on God and listen to my body.  It really is like a roller coaster.  

If you are still reading.......THANK YOU!!!  Thank you for reading my story.  I really enjoy Hawai'i and the aloha spirit and I have tried my best to not let this change that about me.  I want to give a shout out to all my friends, family and church family who have stuck by me, prayed and helped me.  And to those who gave to my GoFundMe page to help me with alternative treatments such as acupuncture instead of harsh chemical medications like Lyrica or pain medications.  I still plan on getting prolotherapy once I save more money for it.  I have gained so many new friends throughout the past two years and deepened friendships that I had.  As hard as it has been I am grateful for the lessons that I have learned and the life lessons I have learned through this season.

Stay tuned for more healthy, aloha spirit filled posts and healthy inspirations.  Mahalo nui loa for reading.