Tag: fibromyalgia

When you find your voice again

Published on by Jesus is for the Wounded4 Comments

Perhaps it is a silent presence, a type of mindfulness that can speak as loud as a mountaintop yodel in a life-changing moment.  Or maybe you must shout it out, screeching through a resistant case of laryngitis just what is on your mind.  Then there are those measured words spoken through gritted teeth; oooooh, I hated when my mother uttered those when I was a child!  A crazy person makes sense only to his or herself when the disemboweled utterance emerges from the trouble soul within.  And the most agregious is the spine-tingling barbs of an angry person that can cut to the heart every time.  Sure wish I had more of the first one and less of the others in my history!

A gentle answer turns away wrath,
    but a harsh word stirs up anger.  (Proverbs 15:1)

Yes indeed.

The seizure attacks came quickly this evening as soon as my face hit the head of the bed, elevated with folded blankets to promote sinus drainage and ease the chest compression of a recent infection.  My left arm was tucked along my left side with my head turned to the right as I lain partially face-down.  This position causes less neck and shoulder pain so it is often my go-to position when I sense the episode ramping up.  The head-banging and shoulder trauma are minimized but the wrenching of my neck is nasty.  Oh well, that’s what the chiropractor is for, right?  Sigh.

Eventually I screeched out some “help me Lord” utterances with what was left of my voice box today.  That came whilst straining to cry out to my Jesus with an acute illness on top of the mysterious seizure-like tics that plague me every morning, evening, and after exposure to noxious stimuli.  I can’t even cry right!  Then things got incredibly darker.  In defense of my sanity I won’t go into details here so let’s just say that frightful images passed through my mind.  Then in my mind’s eye I could see the images on my arms.  Just then I noticed that Steve was stooping over the side of the bed beside me in the dark.  Holy crap!  His sudden appearance in the dark scared me further.  My body writhed with seizures, now lying on my right side with Steve behind me.  My arms flailed in the air, my legs flapped together then apart, and the screeching sound of my hoarse voice screaming holy terror would exceed any scene I’ve viewed from a psycho thriller for sure.  But this was not a movie.  This was ME!

A few decades ago some really bad things happened to me when I was a kid.  I spent about 12 years as a young adult in many kinds of therapy, therapy groups, 12-step recovery groups (Al Anon Adult Children of Alcoholics), faith-based and 12-step weekend retreats, and reading tons of self-help books.  True healing came when I got saved and the person of Jesus Christ showed me his love, care for me, and plan for my life if I would follow His lead.  He was restoring the years the locusts had eaten (Joel 2:25) when I met my intended beloved and married Steve.  I felt happy and free at last.  Four years later I got very sick with viral hepatitis, Lyme disease, and Chronic Inflammatory Response Syndrome (related to mold).  I haven’t been able to work in two years largely due to the seizure attack episodes multiple times per day.  They are heartbreaking for both of us in addition to many other folks who have witnessed them too.

Over and over again I have searched for meaning, a purpose for this extended illness.  The incredible expenses of remediating our home for mold in early 2013 surely tested our marriage for sure.  We were living in a hotel while navigating a myriad of details and tough decisions as Steve travelled between work, home, and the hotel; his daughter chose to continue living in the house and help us out during the entire process.  Eventually our dog joined us in the hotel.  Eventually we completed the remediation, opted not to sell our house, and moved back home.  However, the seizure attacks never stopped!  By summer of 2013 they increased to up to 4 hours per day!  No medical professional or online research has found an answer yet.  Somehow Steve and I grew closer through it all as our hearts were breaking; the pain and suffering has been great.

Recently the Lord did show me a few tasks that needed to be completed in our marriage.  The love between Steve and I over these past 2 1/2 years has become strengthened, deepened because of this difficult journey.  We have now turned our residence into a “safe home” which restricts visitors or the conditions under which others may enter our home.  This helps prevent exposures for me that could cause a negative reaction (aka seizures!).  I love that my beloved is helping to protect me in this way so that I can get well.  I love that he has been faithful to the Lord and to me through this entire journey.  Others are watching us and I understand that we are doing some things right!  My own restoration and healing from the past may have provided a foundation for the important growth in me that has happened of late.  I am grateful to be able to recognize the good that is here along with the challenges.  There is always good along with the challenges if we look closely enough . . .

Back to the scene in the bedroom.  I asked Steve to move from where he was stooped behind me to the other side of the bed where he would be in front of me.  The uncontrollable hell that was ravaging my weakened frame was frightening enough not to have a sense that someone, even someone I dearly loved, was lingering over me from behind.  Steve knows all too well that if he touches me during an episode it can magnify the symptoms significantly.  I just couldn’t risk a casual brush of a hand; my distress was already unbearable.  Then the breakthrough began to happen.  Speaking up despite the hoarseness of my voice rose up some inner strength I had never sensed before.  I had to ride out the frightening images and thrashing about, my estimation of what weeping and gnashing of teeth might be like in a Biblical description of hell.  Tears came.  Silence followed.  I was able to ask for what I really needed when scared.

Soon my gracious and godly husband was gently sitting beside me.  I’m not sure if he was more horrified or moved to compassion!  We processed the scene.  His eyes held mind for a long time in the darkness before I was able to reach out and touch his arm.  Soon he was able to reach out with comforting touch for me as well.  Somehow we knew that my intolerance to intimate touch for the past 6 weeks was finally broken.  I was able to lie in the arms of my beloved once again.

My writing this story includes a great deal of literary and intellectual license.  I mean that I think I might know what is going on, the purpose and meaning in some of this suffering, but there is only one person who actually knows the truth:  my Heavenly Father.  I am glad that I found my voice in the darkness this evening.  I am glad that I survived a wretched scene without too much damage or lingering baggage.  I am grateful to have reconnected with Steve and that he could look beyond the ugliness to the beauty imbedded in this crazy journey together.  I trust that the Lord will go before us in the next scene and lead us in His way everlasting for His purpose and glory.  Lord willing it won’t be so bad next time.

Thank you, Jesus, for your redeeming grace.  You make all the difference in the world for me, tonight and always.  Thank you for your enduring mercy, giving me have the strength to do that to which you have called me (Philippians 4:13).  Be my voice in the darkness and in the light.  In Jesus’ name.  Amen.

 

Biotoxin illness not Lyme disease for me

Published on by Jesus is for the Wounded6 Comments

As of yesterday and my second appointment with a biotoxin illness specialist, my hunt for healing will focus on biotoxin illness and not Lyme disease.  Perhaps you noticed awhile back that I changed the name of this blog?  Join me in finding “Hope Beyond” the challenges of today; for me this blog will always give the praise and glory to the Lord, Jesus Christ when victory comes . . .

I found a remarkable video on You Tube that summarizes mold and biotoxin illness.  Please look beyond the promo for his colleague’s book and his mentioning of “ME” or Myalgic Encephalomyelitis.  I do not have ME although I understand that biotoxin illness and ME are similar, much like fibromyalgia and chronic fatigue syndrome have similar manifestations.  Now that my diagnosis is clearer, I will be largely following the treatment protocol of Dr. Richie Shoemaker at:  http://www.survivingmold.com as coached by one of his trained physicians.

See whatcha think and let me know in the comments below.  There is hope!  Just Julie

Cave Dweller That I Am

Published on by Jesus is for the Wounded3 Comments

Yesterday I found out that my cousin, Lisa, has a tendency to keep the blinds in her house closed when times get tough.  Yeah, that’s me too.  Until we reunited over my brother’s illness, I did not know that she too battles fibromyalgia and a host of “female,” medical issues.  She is at the beginning of her search for treatment options.  We talked quite a bit about these and other family matters while sitting in my brother’s private room on the Telemetry floor at the Detroit hospital.  And so it goes at weddings, funerals and the markers of life in between:  catching up on relationships we are too busy to nourish when busy with the tasks of life . . .

Steve and I got home around midnight after our whirlwind trip to see Mike in the hospital yesterday.  (Steve had to work today and I’m allergic to hotel rooms anyways!)  I am both depleted and grateful for so much today.  Steve drove us the 6-hours round trip so we could see Lisa, Mike, and his fiancé (Lisa) while I endured seizure attack episodes in the car.  Our departure was a few hours late due to the same.  Divine timing superseded it all as we were able to see a physician familiar with Mike’s care during her evening rounds and before we had to leave.  As of today he has been cleared of any infectious disease cause to the right CVA; he continues nothing-by-mouth yet is getting his “Pepsi” substitute via IV glucose.  Pepsi is all he kept asking for . . . in addition to asking his fiancé to wish me a “happy birthday.”  Yes, I got to see my brother for the first time in years yesterday and on my birthday.  Strange but true.

Today I am back in cave-dweller mode.  The grief reaction of seeing him so debilitated is taking its toll so I am just lying low for now.  I tried out a new ceramic frying pan to make my Candida diet/mold-free/low oxalate blueberry pancakes and kept the beast of a skillet on the stove long enough to make lunch this afternoon too.  Perhaps I will shower before my husband comes home this evening and perhaps not.  The extra (stress?) seizure attacks and post-travel fatigue probably contributed to me missing the very chiropractic treatment I needed to relieve my sore back.  Oh well.  The Lord has given me the time and space I need to clear my head from the events of this week and that is good.  Catching up with other relatives today while sharing the news about my brother is good too.

My relationship to one cave dweller in particular is making a difference right now.  So poetic that all of this is happening in my life during the week that the world celebrates Easter.  Our Lord, Jesus Christ lain in state in a cave after dying a tortuous death on a cross for the sins of me and you.  We can point to Easter Sunday with hope that the suffering of our lives (the consequence of living in a fallen, sin-laden world) will be redeemed when He comes again in glory.  He who has victory over death both knows the cries of our hearts and holds them in the palm of His hand that reaches out to us in grace, in mercy, in love.  He is with me here now and goes before me no matter what the next moment may bring for me or Mike.  I am strong in this belief despite the weakness of my broken frame.  Nothing can take this away for those in Christ.   Nothing!

Cave Tomb of Jesus

So if you are feeling weak, vulnerable, fearful, doubtful, or sad this day:  take heart.  The Lord is on the throne of grace and weeps for our suffering.  He will come again in glory and make all things new someday.  In the meantime I hope that you will reach out to Him and let me know how it goes.  We all can be brought into the light of His amazing grace to dwell in His presence if we but believe.

Where does your heart dwell Gentle Reader?

Psalm 73

23 Yet I am always with you;
    you hold me by my right hand.
24 You guide me with your counsel,
    and afterward you will take me into glory.
25 Whom have I in heaven but you?
    And earth has nothing I desire besides you.
26 My flesh and my heart may fail,
    but God is the strength of my heart
    and my portion forever.

27 Those who are far from you will perish;
    you destroy all who are unfaithful to you.
28 But as for me, it is good to be near God.
    I have made the Sovereign Lord my refuge;
    I will tell of all your deeds.

It’s all I can do

Published on by Jesus is for the WoundedLeave a comment

Focusing on breathing today.  It’s all I can do.  The stress level is high as Steve and I anticipate travelling out of State to see my brother tomorrow.  Gratefully I report that it appears he is stabilizing after having had a severe stroke this past weekend.  My own struggles with illness and daily seizure-like episodes continues.  A new treatment for me didn’t pan out too well, increasing the severity of the post-treatment episode.  Oh well.  The Lord goes before me and all of us as we call upon His mighty name:  Abba Father!

Lord I need you now.

We got this.  Philippians 4:13

 

I submit Mike's left-sided weakness to the Lord who strengthens us all.
I submit Mike’s left-sided weakness to the Lord who strengthens us all.

 

 

My Top 10 List: Tools of the Trade

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Top 10 List

I had a supervisor one time that said, “you are only as good as your tools.”  She was referring to the splinting supplies in the occupational therapy clinic that included state-of-the-art warming trays.  Thermoplastics used in making upper extremity splints must be heated to the correct temperature or they become gummy; they also might burn your patient’s forearm when it gets too hot!  They had a thermometer on the splinting cart which was a luxury in those days.  Now with so many choices of materials from which to choose at a variety of temperature specs, having the right tools is standard practice.

Splinting never was my forte but the advice stuck with me.  My words came back to me when the men in my life would often repeat this phrase when faced with a decision of whether or not to add to the man cave “tool box!”  Yeah, it was usually o.k. with me.  Usually a new kitchen gadget jumped into the shopping cart too.  🙂  These days my tools relate more to gardening and my own health care.  Here’s a new spin on the latter:  your recovery is only as good as the tools you employ for recovery.  This post is an addendum to an earlier blog entitled, Keeping Sane While Recovering from Serious Illness.  With some tools that are tongue-in-cheek and not necessarily in this order, here goes:

1)  Treatment journal, online or in a notebook.  Keeping track of medications, supplements, medical appointments, changes in treatment plan, etc. is critical to success.  Who wants to make the same mistake twice?  My hand-written journal entries are more truncated these days since I’ve got my routine stuff down better and more social supports in place.  I do go back to earlier postings and am grateful for some progress.  Even if I am not doing better in other areas, I know that I am coping better overall; thank you Lord!

2)  Smart phone.  When stuck in bed I can still stay connected to the outside world via my social media favs, email, and text.  The Bible App is awesome and keeps me in the Word on a daily basis with its Bible-in-a-Year reading program.  On my mobile I can also look up what the heck is going on in my body and boost my lame brain with reminders of this or that on my calendar.  I was a late-adapter to the world of 4G+ and cannot see going back to a flip phone anytime soon!

3)  Fingertip less gloves.  My hands and extremities get chilled in the evening.  It’s a battle trying to do a few things when I am awake and feeling better in the middle of the night but feel like I’m freezing!  The drop in body temp can trigger noxious symptoms so I needed to find a strategy for keeping my hands warm.  I was Christmas shopping at Macy’s this past year and there they were in a colorful display:  a table filled with mittens that had removable mitts so you could expose your fingertips.  Your hands stay warm from the middle knuckles through the wrists.  Success!  These even come in handy when taking frozen foods out of the freezer or grocery shopping.  Grocery stores give me the chills year round.  Know what I mean?

4)  A really warm fleece jacket with pockets.  For the reasons noted above, I finally have something to keep me warm when roaming about the house later in the evening.  The softness of the fabric is comforting too.  What did we ever do before Polartec?  Or maybe for you it is a handheld fan?

5)  Fuzzy socks!  Yes they are warm.  It’s the cute designs and fun colors that make me smile a little when my feet are cold.  My cow socks (which were a gift from when my Aunt Patty lived in Vermont) are my favorite.  The thicker the better, over the ankle, and loose-fitting too.  Such a simple pleasure.

6)  Breakfast from a traditional lunch bag.  Mornings are the hardest for me.  Most days I awaken in elevated pain with noxious symptoms that make it difficult to use the bathroom let alone make breakfast.  Finally the Lord led me to a solution of making my breakfast the night before much like I used to make my lunch to take to work each day.  The freezer pack keeps it cold until morning.  Many times I am eating food cold that others might microwave/heat up before mealtime but that is not a requirement for me anymore.  I just gotta get food in my belly to feel better so a chunk of meatloaf for breakfast it is sometimes!

7)  Making the effort to cook or purchase special snack foods that fit within my restricted diet.  For example, I think I’ve finally mastered coconut flour pumpkin (or squash) muffins to comply with my Candida/mold-free/low oxalate diet.  Pulling a little essence of home-baked goodness out of my breakfast bag in the morning with Earth Balance Organic Coconut Spread, I no longer feel deprived!  The recipe is a bit challenging so I double it and freeze them for yummy goodness each morning.

8)  Emergency remedies on hand at all times.  For me this includes high CBD hemp oil and a charcoal-filter face mask that have arrested an oncoming seizure attack when in a public place more than once.  We need to be proactive in managing the crises of our health condition where possible, saving the real emergencies for situations beyond our control, eh?

9)  Slip-on shoes and slippers.  Who wants to bend over and risk falling on one’s head when weak from illness and needing to cover one’s feet?  Yeah, not me either.

10)  Something or someone warm and fuzzy.  Yes, this can include the stuffed kind or your man with generous amounts of chest hair to comfort us when needed.  (O.k. maybe your lady in soft flannel pajamas would apply here instead!)  When my beloved is not home our German Shepherd pup gets a little extra massaging.  Who knew that a big, protective dog breed would love to cuddle?  Elle, you rock.

Well there you have it:  my top 10 list of recovery tools.  Have some of your own?  I’d love to hear about them!  Please feel free to add your comments below.