Treatment Update

outnumbered

The concept of negative numbers to me is as mind-boggling as that of anti-matter.  If something can be measured on an integer scale then I suppose the values could go up just as easily as they could go down.  But when they go below zero, which is nothing, how can anything be less than nothing?

Perhaps the answer depends upon to what subject the scale is being applied.  Ha!  I would love for my personal scale of symptoms to be at zero.  I would love for the intangibles wreaking havoc in my life to be less than nothing as well.  But that is just not how it is.  This past Fall was very bad, indeed.

More days this past Fall than any other time since I got sick over 4 years ago, did I write “Sick Day” on my calendar as the activity that characterized the entire day.  That means that over 8 daytime hours were spent in bed due to an inability to perform any goal-directed activity:  about 3 days each week.  That stinks.  I had three trips to the emergency room when exasperated with noxious symptoms, more variety in the traumatic nature of seizure attack episodes, an increase in triggers of episodes (which were unclear more of the time), and less ability to perform my activities of daily living.  Steve had to physically care for me (from toileting to feeding) about four times each week.  This year was the first time that I was unable to complete both my Spring and Fall clean-up chores for our gardens.  An occasional meal out with Steve has ceased.  There even was a blow-up with my Doc in which he suggested I might work with someone else.  He admitted that he doesn’t know what to do.  Fine.  But who else would that be?

So here is my status:

  • Results of blood tests and stool tests are now pending to identify microbes that may be keeping me from getting well.  Flare of systemic Candida is one possibility.
  • Chronic Lyme disease is back on my radar as a possibility so for these first two items I have started to take an anti-microbial supplement every day.
  • Mercury burden is significantly reduced yet its role in ongoing illness is still unclear.
  • Dehydration is a daily battle regardless of how many fluids I ingest or receive via IV.
  • Continuous daily seizure attacks total 2 to 5 hours every weekday and often increase to 8 hours at least one day per week.
  • Social isolation continues to be a problem.  I am grateful for a weekly Skype Bible/prayer time with fellow bloggers and may add a telephone support group soon.
  • An extremely restricted diet (sugar/sweetener-free, dairy/mold/gluten-free, low oxalate/copper/meat) only becomes more restrictive as time goes on than more permissive.  There are often episodes after eating and I do not know why.
  • Physical therapy has generally helped to reduce neck and other pain yet the 30-minute convulsive episode at the end of nearly every visit is burdensome.  I bring my own sheets and graciously they avoid fragrances around me.  They are saints!
  • Generally I am only able to leave the house for medical appointments, grocery shopping, etc. twice per week, remaining homebound the other days.  Recent exceptions:  two wakes!
  • Physical exercises and activities, including my P.T. home exercise program, are rare due the likelihood of triggering episodes.
  • Travelling, even with our super clean travel trailer, increases sickness too much to bother for awhile.  Setting it up takes me 3 weeks and cleaning it afterwards takes 3 weeks as well!  Oy vey.

So now my pity party is over and I have nothing left to say.  I am praying constantly for the Lord to keep my heart from bitterness yet I fear that I am losing the battle.  Crying comes forcefully during the setbacks and I am concerned that it is more a manifestation of illness progressed to my brain than true grief.  My husband Steve carries the burden of all of this in his own way.  He is a saint and my hero.  Thankfully he has a great support network at church and work, his athletic activities, and lots of social outlets to keep him going.  Steve is an amazing man surely one after the Lord’s own heart.

I am hopeful that the anti-microbial treatment will help me; sometimes it even stops the episodes.  Yeah God.  However I am very stressed about the upcoming holidays.  Maybe there will be a “Christmas miracle” at our house too?  Lord willing, the numbers in my life will improve in a positive direction.  In the meantime I will be hanging tough.  It’s the best I can do.  JJ

senior numbers

He knows me so well

There comes a time when you know that you just don’t know what the plan is.  There you go, Mrs. Wesolowski, my late English teacher and queen of everything in life but the dangling participle.  Forgive me but in 11th grade I would have no idea where I would land just past mid life.  The dangling participle is apropos.  I am lost as to my exact location.  All I know is how I got here.  I have no idea what the game plan is.  Thankfully, to Him I am right where I am supposed to be.

I don’t believe I have ever had so many noxious symptoms at the same time for such a long period of time.  Just when I believe that the Lord is bringing me some relief or leading me to some new insight into what to do, I find that I am still clueless.  I am working hard to no avail (i.e. extremely restrictive diets, daily treatment logs, internet research, networking, and so on).  And then a new problemmo emerges.  Perhaps if I could scope my own gut or brain I would feel a little better about things, more in control I suppose.  That won’t happen of course so I am left at the hands of overstressed and overworked medical professionals who need to make sure their butts are covered and tracks are documented in a government database.  Type, type, type during my appointment, noting the results of some test.  “Look me in the eye!”  is all I am asking.  Just once look me in the eye and ask me, “how are you feeling today?”  After all, that is why I am there!  I know that I “have a lot going on,” and am “sensitive” to virtually all of the treatments prescribed.  Then again who really knows if just one more test or consultation will really make a difference at this point.  While I do believe that I will be well someday  even if it is in heaven, I have no idea how to live until then anymore.

The bottom line for me is this:  I am not well and it is not changing.

Now with that out of my head and onto the page I find that there is nothing left to write.  There is nothing left to say.  I am at my wits end with a beat up body and depleted spirit.  There is only one place to go since crashing in the bed did not bode me well earlier this evening.  That place is the foot of the cross of my Lord, Jesus Christ.  You know my aching heart.  You knew me before I was born and all of the days of my life.  You saw this breaking point long before it came.  All the breakdowns that have gone before were just a warm up.  I give up.  Take me as I am.   crucifix

Sorry, Gentle Reader.  This blog has no insight or answer by its weary end tonight.

Into the Night

I am finally awake, stable, and coherent all at the same time!  It is now 12:48 a.m.  Such is life.

First snow dec 2009 007

On a good note, I was able to march around outside this evening in my snowshoes for about 30 minutes this evening.  The night air felt bitterly cold yet the sky was clear with all of the stars visible in our Midwestern corner of the world.  I love seeing our German Shepherd, Elle, jump from one snow drift to the other as she chases after my husband and me.  But perhaps my most favorite moment was seeing her waiting for me as she looked into the house from outside on our covered porch.  Steve had taken off cross country skiing in the backyard and pond area.  She usually follows him closely, often pouncing behind him in his tracks when the snow is deep.  Today she knew that I would be headed out with him shortly after he left and there she was:  waiting with her big expectant brown eyes.  Ah the love of one’s pup!

First snow dec 2009 010

Sometimes when I am alone it is hard to feel the love that I know exists in my life.  When I am the sickest each morning this is especially true.  For me it seems that so much of the success of recovering from this time of illness will lie in what I do with the grief of the trauma I have experienced.  For over two years now, I have felt traumatized by the wretched seizure attack episodes that wrench my body with pain, headaches, cognitive changes, ringing in my ears, crying, spontaneous vocalizations, and violent seizing.  For over two months, the episodes last around four hours total per day with the worst ones occurring in the evening.  The sadness can be overwhelming; the disappointment each time they return can be heavily discouraging.  Both can lead to a sense of emptiness that is devoid of love, hope, and meaning.  At some point I recover enough from an attack to get something to eat or drink.  Even eye contact with the lone pet left behind with me when everyone else in my life has gone off to work or some other noble activity can be a mixed blessing:  comforting and protective (yes) yet a pittance for more meaningful human contact.  By the way, where is God?

Yes, I often long for Jesus with skin on at these times.  I am grateful that most recently I have found Him in the caring voice of a friend on the phone and always in the loving embrace of my beloved Steve.  Sometimes I miss picking up the phone and calling my mom.  This desire to connect with her seems stronger the more the years go by since she passed away nearly seven years ago.  I guess it is normal when a person goes through a time of testing or sorrow to desire the comfort and wisdom of a parent no matter what your current age might be.  If my mom were still alive today I think she would want me to keep moving, keep going, keep trying despite the setbacks.  O.K. mom:  will do.  For tonight I’m going to call on the One who sees me whether or not my husband is around, the dog is awake, a friend is home to answer the phone, or my self-soothing words in my heart to my deceased mother means anything.  I’m going to the throne of grace.

My dear friend mentioned Psalm 91 yesterday.  Here are some gems from the Psalm to which those with an anxious heart often turn:

Psalm 91

Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty.I will say of the Lord, “He is my refuge and my fortress,     my God, in whom I trust.”

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14 “Because he loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”

From Bibleclassics.com I found this little gem of insight into Psalm 91 that spoke to my heart this night:  “Whatever happens, nothing shall hurt the believer; though trouble and affliction  befal, it shall come, not for his hurt, but for good, though for the present it  be not joyous but grievous. Those who rightly know God, will set their love upon  him. They by prayer constantly call upon him. His promise is, that he will in  due time deliver the believer out of trouble, and in the mean time be with him  in trouble. The Lord will manage all his worldly concerns, and preserve his life  on earth, so long as it shall be good for him. For encouragement in this he  looks unto Jesus.”

Yes, thank you Matthew Henry.  I will hold onto the psalmist’s words of comfort inspired by my Lord who sees me on my bed of sickness, who promises He will never leave me or forsake me.  And if it be His will, He will deliver me from my suffering.  Into this night and for the rest of my nights I will ultimately rest in the loving arms of the one who is showing me His goodness despite the darkness.  No matter what the next day might bring I will trust You.  No matter what the next hour may bring I will wait on You. 

No matter what you too may endure Gentle Reader, I hope that you will be encouraged that your sadness or disappointment does not go unnoticed by the Lord who loves you too.  He is worthy of our faith.  And I know if we both but believe in Him, we will be blessed in some special way that will transcend our nights, our days.  In the meantime He will not frustrate us beyond our ability to cope and will provide a way out when overwrought with temptation.  These are promises in His Word and truths by which we can endure all things.  We will never be alone.  His eyes will always be smiling towards us through the looking glass of life.  JJ