Make a Way--I am They

Friday, March 22, 2019

Trusting Amidst Transition

This week, on Monday I had an appointment with my GP/pulmonologist and I related to him some of the difficulties I'm having lately. I have a tremor--which I've had for years, but it is worsening.  It is usually when my hands are at rest...a slow shaking that goes away with intentional movement.  He tested my muscles and told me that I have rigidity which played into my doctor's suspicions. The tremor started in my left hand and is  now in both hands and my right leg/foot and sometimes in my neck/head.  I also have serious trouble when eating.  At every meal I have choking fits as I have inhaled some food or liquid. I had a problem like this in a restaurant lately...and a man leaned over to me and said "Any day without a Heimlich is a good day."  I burst out laughing and then really choked. LOL.

I also have been struggling with depression.  So I told my doctor all of this and he said I have either Parkinson's Syndrome, or Parkinson's Disease.  The syndrome would be one that is caused by my psych medicines.  These meds are the only ones that have worked to keep me stable. I can NOT stop taking them,  The full blown disease most of the time, results in dementia. My memory is terrible and  I have had periods of confusion.  In fact there are frequent days when I wake up in the morning with a "blank slate"--I do not recall what has occurred in the days recently past. If I have been sick in anyway, sometimes I will know there is or was something wrong, but cannot recall what it is.

In past CT or MRI scans of my brain they have found a large and increasing amount of atrophy...dead brain cells resulting in  impaired cognition.  I have had 15 treatments of bilateral ECT ("shock therapy") which  was unspeakably destructive to my brain. I lost several years of memory--and my short term memory remains damaged by these treatments....I would have frequent days -even years after the ECT- when I would wake up in the AM with no idea of where I  am or how I came to be here (in my own bedroom) and have no idea what is wrong with me.  I have picked up my kindle and did not know what it is or how to work it.

There have been periods, the longest of which lasted for 4 days, when I am completely confused, cannot sign on to my computer, cook a meal or even turn the oven on....I am aware, in those times, that my brain is not working and this is unspeakably terrifying and distressing to me.  My beloved GP (now retired) told me he thinks I'm having mini strokes (TIA's) resulting from the ECT. Now whether it is from that or whether it is due to Parkinson's activity I do not know.

I have decided not to worry about this possible diagnosis.  It is not an easy thing to not worry about...but I know that worrying is not going to help anything. On Wed. night I went to prayer meeting at my church...there was a good turnout, maybe 12 people....and when Pastor asked if anyone needed prayer, I spoke up and said I did.  I told them about my needs.  There followed an intense time of prayer that lasted throughout the entire prayer time.  There was a number of helpful things said or revealed through the prayers of others which I'm not going to go into here....they are things that I need to work through and implement on my own with the Lord.

At least in this moment, I feel at peace regarding this possible diagnosis.  I have an appointment with my neurologist on April 29th and it will be up to her to make the final determination about what kind of Parkinson's I might have or maybe something completely different.   I am trusting God that he will work in whatever way he desires to act. Of course this and the RA/PsA will affect my future housing situation. It's all  up in the air.  I don't like nebulous uncertainty.  Who does?  I just have to trust that God will take me to where ever he wants me, one step at a time.  I have put my future in his hands.  He will work and he will guide....all I have to do is to remain sensitive to his working  and go where he takes me..

Please pray for me in these uncertain days.

Saturday, March 16, 2019

Justice and Injustice--who spilled the milk?

Well, it's Saturday morning.....and justice has been served.
There have been several times when I didn't put the lid on something in the refrigerator tightly enough....and my husband, who takes literally the instruction on the container to "shake well,"...and yep...juice, milk, what ever....all over him and the kitchen.  So today I took out half and half for my coffee and was picking it up to pour it - but I picked it up by the lid and yes...half and half all over everything. Now for most people it would be an annoyance.  For me it was just shy of a disaster.  I have a really hard time bending down to the floor.  Squatting is impossible.  So I used dish towels to soak it up using my feet  ...Then I wet a towel and went over the floor again. I am just praying that once it is dry it will not be sticky or smell like sour milk.  Blessedly my husband is still asleep--hopefully I will have no reason to have to " 'fess up."  I cannot blame him because he doesn't use the half and half--and would never have left a loose lid anyway.

This followed a long night. I only slept for 3 hours and that was broken.  Our kitty kept me company for most of the night. 
And I watched the movie "I Can Only Imagine" which is a really good movie about the background of that song by the same title. This was my second time watching it and it was still good. Even at 3:00 AM.

I have been struggling with something.  It is one of the negative symptoms of SZ (Schizophrenia).  It is called "poverty of thought" and it is the cause of yet another problem "poverty of speech" (because thought precedes speech --at least one would hope).  Poverty of thought makes me have nothing in my head...and if I do it is usually trite, commonplace stuff.  It is getting really hard to write a blog post when I have nothing in my head worthy of sharing. 

And poverty of speech means that in an hour long trip in the car, I will maybe put together one sentence--the rest of the time I am quiet. This is distressing me greatly.  I used to be intelligent and had easy words. I liked to converse and was comfortable in a debate.  Now that is a terrifying thing to me.  As far as I know there is no medicine or treatment for these two problems.  Top that off with memory loss and I'm a step away from dementia.

I am going to pray that God would heal this problem. If you would--and you love the Lord--please pray for me.

Monday, March 11, 2019


It is one of the most important "ingredients" supporting life itself in our body. Our arteries and veins spread throughout our bodies, deliver oxygen to all of our organs, including skin. Our lungs suck in oxygen rich air and the red blood cells pick it up in alveolii in our lungs...tiny air sacks filled with O2.

When we are wounded with wounds that are slow in order to facilitate healing, sometimes hyperbaric chambers are used.  Once inside these chambers, 100% O2 is breathed in and this treatment helps in healing sores that are resistant to healing.  This aids in healing infection and allows antibiotics to work better.

But what happens when Oxygen meets an open flame?

So too, Friendship aids us in "support" for our lives.  As we travel through life, we accumulate friends and this helps us in, not just our day to day existence, but also helps to heal old wounds as we talk and pray with our friends.

But what happens when there is a spark?  A Spark, say of mental illness?  Or catastrophic physical illness?  We hope that the oxygen will heal...but sometimes it explodes into painful rejection as friends feel the need is too great for them to meet.  Or maybe they are just horrified to see a side of a friend that is less than attractive and maybe frightening.

I have lost a bunch of friends including my maid of honor at my wedding and other friends as well. When I lived in Orange county NY, I had 6 friends.   We were very close...stamping and laughing as we worked on creating beautiful cards.  We studied God's Word together.  In fact, I led a Bible study for women that these ladies attended along with others.  We prayed together.  I  felt that I could trust them and they could trust me.

Then fast forward some years after I had moved away to the Poconos in PA...the mental illness that I had hidden from my friends, or maybe I told them but since they never saw it in action, they dismissed it....Anyway I had been doing so well that I had been off my medication for some time and then the Schizophrenia erupted into paranoia and terror of my husband.  I fled, being sure that he was following me.  And foolishly, perhaps, I sought refuge in the home of one of my friends....and the other 5 friends,  cared for me until I finally returned home.  But after that my friends did not call, they did not respond to my calls...I bumped into my closest friend later in a CVS and she averted her eyes and mumbled an awkward response to my greeting and walked away as quickly as she could, her cheeks bright red.

To say that I was devastated is an understatement.  I trusted these ladies.  I trusted them with my heart.  And they broke it.  And the biggest thing I want to say to them is "YOU CALL YOURSELVES CHRISTIANS?"  I guess they forgot to put on their WWJD bracelets and they forgot all about the mandate we are given to love others...especially those who are ill or unloved or disenfranchised.  I'm not psychotic now but I know that these ladies will forever see me as "crazy" and that there is nothing I could say to change that.

Lord Jesus, you  were kind to the demoniac living among the tombs.  You unchained him and helped him to dress.You  healed his mind and most of all you loved and cared about him.  Lord, thank you for loving me, even in my worst moments.  I pray that these ladies will some day learn the lesson of love and basic human kindness.

All this to say that you need oxygen to live...but it also can blow up in your face.