New Sport: Thwarting Disaster!

So glad the Lord gave me the presence of mind to cancel a Methacholine Challenge Test today.  I feel exhausted from the prospect that I could have died had I gone through with the test . . .

In the process of diagnosing asthma, a Doc orders a pulmonary function test.  If your lung capacity is deficient for either the intake or exhalation of air, you may have a problem warranting treatment or at least a rescue inhaler.  Since I started having severe chest pain and compression symptoms at the end of March, the LLMD ordered this test for me.  I completed it about a month ago with findings suggestive of mild asthma.  Hmmmm.  I’ve never had breathing problems before and the onset coincidentally occurred during the stress of relocating back to my home after mold remediation.  I was scared.  A lot was at stake.  We had spent thousands of dollars to remediate our home, much of it not covered by insurance or the gift of friends.  How was I going to do after 76 days away from home?  Turns out that I did o.k. initially then the noxious symptoms gradually returned.  Oh well.

We have continued to narrow down and eliminate the potential triggers over these past two months so I can get well.  This takes time and there have been some successes and failures alike. As long as there is an underlying Lyme Disease process (that I am not well enough yet to treat directly), I will have some sickness every day.  But the bottom line is that I did not have difficulty breathing or feel like an elephant was sitting on my chest until the last week of March, 2013!  The LLMD ruled out a heart attack.  Then a negative lab finding for a complication of mold illness suggested that I might benefit from a particular prescription medication, not covered by insurance.  I tried it and am receiving some benefit, gratefully.  The chest pressure is less most of the time.

Today was an exception.  I had a particularly severe reaction to our ol’ church building last night resulting in about 45-minutes of intermittent seizure attacks and marked chest symptoms.  I was still pretty sore today despite taking the medication for the latter symptoms.  So when hearing the risks of the Methacholine (MC) Challenge Test today including a full blown asthma attack, I got really scared.  The MC progressively constricts your airway while a respiratory therapist takes measurements of your breathing.  Holy cripes!  If your values go down 20% then they give you Albuterol to open your airway.  Well isn’t that dandy.  I was given Albuterol as part of the test protocol during the Pulmonary Function Test last month and did not notice any difference in terms of breathing easier.  Thankfully, I had a respiratory therapist who was willing to talk with me in detail today about the test, his experiences, my PFT findings; we agreed about the extreme likelihood that I would react negatively . . .

I feel like I stared death in the face today.  If I would have reacted, it would have not only been a full blown seizure attack AGAIN, but the risk of respiratory arrest.   Holy crap!  Remember the cartoon I posted awhile back about feeling like a lab rat?  This lab rat could have been no more.  I crossed out my name on the consent form and wrote, “patient declined test.”

When I have a seizure attack with chest compression, I do not breathe for several seconds.  It is by the grace of God alone that my breathing re-starts!  If I try to initiate active movement, such as trying to inhale, the volitional initiation of movement triggers another seizure attack.  A similar reaction happens when trying to talk or move as the attacks are occurring.  Eventually I collapse and need to rest.  Much time needs to pass thereafter before I can function on my own or someone else has to lift me up and begin to move me.  Sometimes I can initiate fine motor movements and not gross motor movements (such as walking or bearing weight on my legs).  Usually my biggest challenge is simply trying to breathe again.  Hyperventilation comes first then deep breaths and labored respiration.  Normal breathing is last.

O.K., does that sound like asthma to you?  Perhaps some aspects of it are like asthma.  I don’t think that most of it is asthma.  Google it and see what you think!

So my new sport this evening is first to write until my exasperation with the complications of Lyme Disease are more on the computer screen than in my head.  Sorry for you, the gentle reader and spectator.  This day was a bad one.  The sport of living with long term illness continues as I try to listen to the Holy Spirit and all the advisors/coaches He has sent to get through the game of life.  I am crying as I write this.  You the spectator have witnessed the athlete getting injured.  Not only is my chest still sore but my heart is bruised as well.

I talked to my precious husband on the phone from the parking lot of the hospital this afternoon.  God bless that man!  I was exhausted and barely realizing the significance of my experience inside that building when his kind words soothed my soul.  Steve has asthma and has had a Methacholine Challenge Test in the past.  He was worried for me, praying for me.  He agrees that it was too risky to complete it and ’twas better to have refused it.  After we talked I still had a few errands to run, prescriptions to pick up, supplements to purchase, and of course:  just a couple more plants to take home from a mom-n-pop nursery.  So glad Young’s had the Sweet Marjoram I haven’t been able to find anywhere else in the area.  Just saying the name,  “Sweet Marjoram” makes me feel better.

Now that all of this is “off my chest” I can go do what I do best.  It is dark now but that never kept me from gardening before.  Besides this time it’s planting two planters and I can do that in our garage on my very cool potting bench.  My husband’s son, Daniel, gave me that awesome bench 5 1/2 years ago.  Love it.

Sounds like Steve’s home.  Sigh.  All is well.sweet marjoram

The Laundry Still Gets Done

Take me to the top

I don’t wanna cry no longer

Take me to the top

Can’t you see I’m getting stronger?

Take me to the top

Yes there’s room for me and others

Take me to the top

Hey that’s where we will recover!

A simple song, yes it is, written long before I knew the diagnosis of Lyme Disease and sometime after the diagnosis of fibromyalgia.  How could I have known how long this journey would last nor how rich the experience would be if I just “bothered to recover.”

Yes, doing the work of recovery from any illness, addiction, loss, or heartache is a bother!  It takes time, energy, resources, finances, and emotional strength.  When I did it all on my own with my own determination I did get somewhere for a while.  After all I was told at a very young age that I am a “very determined person.”  I’ve tapped into books, self-help resources, 12-step programs, support groups, special diets, supplements, retreats, doctors, specialists, the internet, advice from others, my own creative intuition, and so on.  Yup, I should have figured it all out by now if it were up to me.  Just gotta keep staying positive, helping others, practicing gratitude, and memorizing a ton of slogans and following helpful inspirational wisdom from others on the journey ahead of me.  Hey that’s were we will recover . . .

Well guess what?  It ain’t enough!  No amount of wishful thinking, earthly wisdom, and STUFF is enough to cure or figure out the consequences of living in a fallen world.  This world is not perfect and everything will not be revealed or resolved by the right karma, nirvana, carpe diem, keeping my chin up, and the like.  Sometimes the world simply does not make sense.  I’ve heard the trouble of this world described as the influences of three forces acting against us:  the world, the flesh, and Satan himself.  Maybe so.  Or maybe it’s a combination of them?  Perhaps you would debate me on many of these points.  That’s o.k.  I welcome it.

You will never convince me however that this world is my home and that what I see is all there is.  You will never convince me that there is no purpose to our suffering and that it will end if we just do this or that.  You will never convince me that I deserve better, am entitled to more and should just set more goals to have them.  Sometimes my best is to lay low, to settle where I am.  You will never convince me that if I don’t act now, I will  miss “the boat.”  His timing is perfect now and forever.  You will never convince me there is no God because he allowed this suffering to happen.  Sorry.  I have seen too many blessings that I would have missed or screwed up if I acted to change things in my own strength and timing.  I know better than all this and you can too when you consider inviting Jesus into your heart.

So today, despite the pain and the wretched symptoms last night, the laundry will still get done.  How is that?  It is not by my strength that I live but by He who lives within me and this includes the gumption to fold towels!  When I tanked this afternoon I chose to read The Word first and not surf the net.  Why?  Since He is my ultimate source of wisdom and peace I simply cannot waste my time or energy elsewhere.  They are too precious these days.  Then it didn’t take very many of these precious moments before my relatively small list of things to do became overwhelming.   That’s when I came before the Lord’s throne of grace and He met me there.  Looks like writing about Him was my most important task on the list.  And if I wondered why I couldn’t do something else instead (like go to work or work on my home business), I had to let it all go to the God who holds my life in the shadow of His loving arms, His loving wings.  He knows the right time for everything.  He knows why all this is allowed in my life and He will be glorified in the end.  My best is in the best of hands.

So me and my unfolded laundry are pretty stubborn this afternoon.  Have I convinced you?  I’ll get to those clean washcloths soon enough and I’ll be glad the One Who loves me and knew me before I was born got to me first today.  Forget the laundry.  Hey Elle, where’s your leash?  Remember that walk I promised you yesterday?  Bow wow.

What you didn’t say I’m glad I didn’t hear

Lyme myths posterWhen someone says to me, “you look good today,” I’ve decided to simply take that as a compliment.  The cynical alternative would be to question the intent of the person and wonder if he or she is thinking one of the phrases in the poster above.  Is he or she wondering if I am really sick if I am able fix my hair and wear make-up one day in the past week?  No one sees me when I don’t feel well because I don’t leave the house!  Oh well.  As a friend of mine named Carol used to say, “it’s better to just leave it alone.”

When someone asks me if I’m back to work yet, I’ve decided to say that, “getting well is my full time job these days.”  If the person probes further, I’ve decided to disclose that I spend 16 to 18 hours every day in health-related activities and appointments.  That usually brings silence so I quickly change the subject to his or her job or other  primary role in life.  My husband advises me that people like to talk about themselves and usually have a great time with you if you ask a lot of questions about them.  I do enjoy getting to know others so his approach works well.

When someone asks me how I am feeling, I’ve learned that a quirky response such as, “below average,” “stable,” “not as well as I’d like to,” or “I’m having a better moment” works well.  I rarely feel well (or if I feel better at the moment it is likely to change within the hour!) so it’s tough to give the truth:  a negative litany of symptoms that has gone on for 1 1/2 years!  This crap-ola-ski is likely to continue for awhile so I’m going to pace my answers.  (I told you I’m Polish right?!)  I appreciate the question, acknowledge it and turn my attention to the other person.  It’s pretty clear when a person cares for more information and sweet when this happens.

When I do get to share a little more of my story, I try to end it with gratitude.  There is always something for which I can be grateful, for which we all can be grateful.  Today was a day that stunk until about 1:35 p.m.  The noxious symptoms persisted without a logical reason even after a post-treatment nap plus an additional rest period.  In the afternoon I moved slowly into extensive amounts of cooking my special diet and cleaning up this or that.  The sweats episodes did not diminish until later in the evening.  I am however grateful for two cool things that happened today:  1) crafting an amazing baked lamb cabbage roll casserole (gluten/sugar/dairy/chemical free as well!) and 2) completing the netting and support structure for the blackberry raised bed to keep out the birdie scavengers.  Cool beans.  Steve and I had a sweet evening together later after finishing our respective projects today.  Thank you Jesus!  Lord willing, I will worship His holy name tomorrow at church . . .

Recovery from a long-term illness thang isn’t for wimps you know!  Most people give up, settle for less, walk away from their faith in anything or anyone, become bitter and isolated, or worse.  I choose to trust that this journey will not be wasted, that the Lord will use it for His glory if I keep Him out front, and I exercise some care in my speech and behavior.  Rejoice if you see me out working in my garden!  I’m probably sweating bullets, nauseated, dehydrated, and weak but getting out into the world anyways.  We all know what it is like to have to carry on with life when we simply don’t feel well, don’t feel like carrying on with life.  I just get it more often!  Eeek.

DSCF7968

Ahhhh.  That’s better.  Happy Spring y’all.

Enough Weirdness Already!

I realize the last posting was a bit weird.  Please forgive me.  This is how my mind works sometimes:  trying to be funny, sincere, and well, express myself in some creative way.  The result this week:  an odd blog posting!

And now for today.  The Lord is laying on my heart the reality that I may not be able to return to my profession of occupational therapy.  To work in healthcare requires an incredible ability to serve others under stressful circumstances; work in environments laden with noxious smells, microorganisms, temperature and sound variations; meet a wide range of physical demands from extensive sitting to heavy lifting; and to continuously learn, apply, and re-evaluate extensive amounts of technical/scholarly information on a daily basis.  This is impossible with the ongoing neurological complications of Lyme Disease and Chronic Inflammatory Response Syndrome.  On the positive side, the need to be adaptable, resourceful, and creative in OT has graciously remained during this time of illness.  These skills have been instrumental in helping me cope with the chronic illness that continues.  The other skills come and go.  Maybe they will come back?  Who knows.  This is a big realization.

Thankfully I do not need to make a decision about my career this evening!  (However I do keep my licensing and continuing education requirements current, you know.)  The Lord is also laying on my heart my next project within my home business, Trinity Jewelry by Design, so I will focus on that for the next few months.  I’m thinking of developing some sports-related products that may be attractive to the kayak paddling community.  If some additional research looks promising, I may move forward quickly now that it’s canoe and kayaking season in much of the United States.  I do continue to learn a lot about using the internet, my online shop, networking, and the administrative requirements of a home business.  Watch this blog for new developments as you will be among the first to get the news!

Since Steve and I never really know the stability of his employment as they undergo more changes this year, we remain open to the larger issues of where we will live and what work will carry him into retirement.  We are not concerned about these types of unknowns, really.  It would be challenging if the Lord leads Steve in any career moves at this time in our lives yet we both have experienced successful job changes and relocations under a variety of positive and negative circumstances.  Jesus is already there, ahead of us in space and time with a plan for our lives.  So glad for that!  For example, I lived in the suburbs of the 3rd largest city in the US (Chicago) before I moved to marry Steve in the Fort Wayne, Indiana area.  In a city .04% the size of the Chicagoland area, I found the best husband, best doctor, best home, best quality of life, and best Bible teacher that I have ever had in my life!  I had no idea all this was possible!  Wow.  God is amazing and provides for our every need no matter where we are on the map.  (Proverbs 3:5-6) Very humbling, for sure.

So enough of the weirdness.  Enough of the need to know.  Enough of the need to control this or that.  Enough of the worry and strife.  I am going to stay in the moment and enjoy the crazy thunderstorm outside no matter what affect it may have on my illness or even if it blows out the power and this blog is lost forever.

I think I will be prudent and sign off now . . .  :J

The 8 Colors of Crayola Poster Markers Revealed

Staying on track during the recovery from a chronic illness requires faith in the Lord for sure.  From there are the little strategies that keep me sane like writing in a treatment journal.  With so much going on from ever-changing meds., supplements, Rife programs, OTC remedies, nutritional strategies and the symptoms that follow, I would be lost without my handy Crayola Poster Markers!  This also helps during appointments with my LLMD when he asks about the course of illness and treatment responses (or lack thereof).

Here’s my simple color key that helps me on track:

  • Bright pink = nightmares
  • Blue = headaches
  • Orange = tic or seizure attacks (thin line for tics; bold line for attacks
  • Yellow= new treatments
  • Green = pain, burning, movement anomalies
  • Red = overall sickness, sweats
  • Purple = new stuff
  • Brown = elimination, detox

Then there’s the traditional yellow highlighter = Beam Ray Rife Treatments and Duration

So there you have it.  I’m on my second box of markers and the green one is running out of ink again.  I thought it would be the orange marker pooping out first but it’s got the staying power I did not expect!  So glad the bright pink and purple ones haven’t seen any activity for the last month.  Those colors are best portrayed in my garden right now, thankfully!  I got to retire the brown one a couple of months ago too.  I’m sad that the blue one gets used most days and especially since physical therapy ended 2 weeks ago.  I had improved and needed to use the blue and green markers less when P.T. was weekly but the insurance company doesn’t want to play nice with my Crayola buddies.  Geez!

Crayola poster markers