Saturday Gratitude Post — February 22, 2014

I am so grateful, today.  I stopped this morning to think about the blessings I enjoy, and how I came to understand them so late in my life.  I am surrounded by family and friends who love me, and who want to see me succeed.  That is very gratifying.  I used to believe the people I knew, who wished me well, also had expectations I would never be able to meet.  Time and circumstance collaborate to teach me that love, friendship, encouragement, and even constructive criticism  are all gifts, from others to me.  I had best learn from them and appreciate their inherent value.

I am thankful for the many people who choose to receive and to read my writing.  Each person reading this post can take some credit for my continuing blogging successes, and if I could, I would love to thank each of you personally for your gifts of support, argument, questioning and seeking deeper knowledge.  I know the exchange between us, a function of this blogging relationship, strengthens me, and pushes me toward more in-depth writing, as well as deeper self-understanding.  Thank you, each of you, for heaping these blessings on me.

I saw my diabetes nurse-practitioner this week, and I believe we are finally dialing in my insulin levels.  This is the first time in decades that I am maintaining a solid <180 blood glucose.  I am more than happy to admit that small adjustments to my insulin doses make huge differences in not only my physical health, but also in my sense of self-confidence and self-worth.  I am very happy to be alive and interested and interacting with the world around me.

I could go on for days and still not list all the truly positive aspects of my life.  And even though I don’t mention everything for which I am thankful, I dwell now in a more solid sense of appreciation for the world around me, and for my life.  I know I say this every week, but truly, I am a lucky woman, and I live with  sincere thanks for my every moment on our lovely world.

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Part 2: Do You Believe Me Now, DOCTOR?

(I published Do You Believe Me Now, DOCTOR? earlier today.  I intended to call it that, Part One, but I forgot; my mind was elsewhere. So I did mark this one Part  Two.  That should explain the title of this post.)

Now, I’m going to write a post about Morgellans Syndrome, the disease my doctors don’t believe exists.   In the beginning, before I even knew what this thing was called, my arm was completely dug up from this hellacious itching, seemingly under my skin, as well as on it.  I broke out in little pairs of red bumps that quickly turned black.  As time went on, my dirty laundry had thousands of these black whatever-they-are, sticking to the lint filter and getting back on my clothes as I pull them out of the dryer.  Each of these pairs marked a place of that awful itching.

I went to the ER, not long before the itching started, and told and tried to show the doc these microscopic hairs (I thought,) coming out of my mouth and nose and ears.  He wanted to call the psych ward and admit me, but I got angry, yelled at him, and stomped out.  When the itching started, I saw that the hairs were coming from the sores, as well.  I pulled a few out and showed them to friends and family, but nobody could see anything.  I started down a long road of frustration; I was told to stop scratching, told that I had delusional parasitosis, that I should see a psychiatrist.  A few weary weeks later, a dermatologist in Portland told me the same thing.  She did a biopsy, but no one would look closely enough.  I knew I would eventually need photos, maybe even microscopic ones.

I went to see a psychiatric Nurse Practitioner, an appointment I scheduled months before.  She believed me.  She couldn’t see anything, but she believed me.  Of course, none of the other doctors cared about her opinion, because she thouht differently from them.  The P.N.P. referred me to the terrific psychologist I am now seeing regularly, for other issues.  I came out of the office happy that she believed me, but angry because she was the only one.  I have nine or ten doctors — I lose count — and she was the only believer.  I began to think about suicide.  Not seriously, not at first, but when that thought gets in your conscious mind, it sticks there.

Throughout this entire period, I was convinced that I was infested by something.  (Much later I read that the itch resembles the feeling of something crawling under the skin.  They weren’t lying.

Time went on, and I slowly healed.  But a few months later, the spots were back, and I tore that same arm to pieces again.  This time, I was seriously lost in fear and frustration and anger, and I thought frequently that, of all the weird things that have happened to me, only this one was going to get to me.  I felt cheated, and being told I was imagining all of this sent me right to the edge.  I said something to Mom, and she rushed me to the ER, where I met a doctor who managed to convince me that I didn’t have any bugs under my skin, mostly by talking to me kindly, and listening to me, rather than saying, “I don’t see anything,” over and over and over.

That visit set me on a slightly better path — I didn’t know what it was, ut I knew what it wasn’t, and tat felt like a good start.  As the weeks passed, my mood improved, mainly because I being seen regularly by the Wound Care N.P., a wonderful, loving woman who helped me see that all was not lost.  Se almost had me convinced that I just had dry skin, until a friend recognized the symptoms for what they were — Morgellans Syndrome.  She gave me something to search for online, and slowly, I began to amass knowledge, to see photos and read of others’ experiences with doctors and family and friends; each lived by a method of self-assurance and affirmations.  The reports continued to talk about confusion, and a brain fog that seemed to envelop sufferers who were not careful to keep active mentally and physically, and to get the emotional activity under control.

This is a very long story.

Morgellans was said to produce odd, microscopic fibers, red and blue and brown and white.  Once I knew this, I started pulling them out of the sores.  I know, Ewww!  But once I saw one of these coming out of my skin, I could not ignore them.

I bought a tablet in December 2012, and not much time passed before I realized that I could take photos with the tablet that could be enlarged to show the fibers.  I was really happy.  ut none of the doctors wanted to look at the pictures.  They refused even to admit that they might have een wrong.  That pissed me off, again, ut by then I was over the shock, and I just decided to bide my time.  My day would come.

Well, I waited a long time — more than a year.  I continued to notice the fibers, and to pull at them — and those suckers are much longer than anyone believes.  I tried to cut one, but no luck.  I tried to yank it apart with my hands — that was a laugh.  I got a lighter and tried several times to burn one, but that didn’t work either.  That got me thinking, if I can’t get these off my skin, what am I going to look like in another two years.  Let me give you an example.

When I took the new profile photo for my Gravatar, and uploaded into iPhoto, I accidentally hit a button that made it my wallpaper.  Enormous.  And I saw this:

Morgellans fibers on face  -- my profile photo

Morgellans fibers on face
— my profile photo

No shit.  I have a blue beard.  I have looked and looked in the mirror, but I can’t see it there.  I sure can see it here. and all around it, red and blue fibers.  Look closely at the back of my neck — several flyaway fibers show there.  How weird is this?

I tell you, this particular picture is still tough to look at.  I just looked at my profile picture, and now that I know the blue beard is there, I can see it even in the thumbnail.  This is the biggest challenge to my new self-esteem.  So far, I’m holding on okay.  If I try to hide this, I have fibers showing somewhere else, right away.  I am covered with them, like PigPen in Charlie Brown — a swirl everywhere around me.  So, what do I do?

Well, I write a post and publish the picture, and remind myself how much I went through to get to where I am now.  Embarrassment is not going to throw me off now.  I just need to get okay with this all through — on the surface, I can laugh, but I am still a little horrified when I see this closeup.

Remember the photos from te last post?  Here one, again:

 Lyme Disease

Lyme Disease

With magnification up as high as it can go, the fibers show up clearly close to the crook in my arm.  I have no visible hair on my arm, but magnified….If you look at the edge of my skin against the dark shadow, some of the red starts to show clearly. This isn’t red like red hair — this is red like red, white, and blue.  And I am covered with this pelt, on every inch of my body.  How weird is that?

More photos will follow, but for now, these should do away with any doubts.  If they don’t, somebody is just not paying attention.  Just one more condition to add to the list; the difference is, Morgellans is so new that no one can give a prognosis, much less a cure.

Thank you all for sticking with this rant, if you have.  If you didn’t, I would understand.  Just give me a wave and stop reading, if it is too gross.  It’s part of me, and, to quote Peaches, from Connie and Carla, [“No one] gets to love only the parts of me that don’t make them sick to their stomachs.”

Remember, I said warts and all!

Do You See What I See?

Don Miguel Ruiz writes, in the Agreement Don’t Take Anything Personally,

Everyone Lives in Their Own Dream

All people live in their own dream, in their own mind.  They are in a completely different world from the one[s] we [each] live in

Continue reading

My Gratitude List 06/09/12

My gratitude list this week may seem a little strange.  Please bear with me.  I have been thinking hard on why I chose the life I did; diabetes, emotional paralysis and mental faculty — a very weird combination.  I don’t know the why, and probably I won’t let that hold me up.  I know one thing:  I cannot imagine having reached this satisfied state, if I hadn’t had all of that earlier stuff to compare it with. Continue reading

Writing in Voices

Yesterday and today. I have been brought up short against the habit of my first 51 years.  I am in the process of writing a statement of intent, in order to win a scholarship to a personal-writing weekend retreat.  Funny, how when I write here, I don’t feel the need to have anyone proofread for me, especially not for the type of voice I’m using.  I use my own voice here, and I believe that it works very well.  But for this statement, I found, upon finishing my initial draft, and sending it to sister S. for her opinion, (and thank you, S.,) that I led with my disease, and didn’t mention my goals until far down the page.

I hadn’t noticed this, but I am sure I don’t want my identity to be “a diabetic.”   There is so much more to me.  So I wrote a second draft, and once again submitted it to S.  This morning, she pointed out that, while the overall piece was good, there were places where I wrote things such as, “I plan to continue posting to the blog, but I also have in mind the possibility of writing at least one book.”  As soon as S. drew my attention to this sentence, I saw that, if I were awarding scholarships for this retreat, I would not choose to give one to someone who may, possibly, write a book.  I continued to read through the piece, and found other similar examples of what I call my wishy-washy voice.  Obviously, a third draft is in order, and I’ll begin that when I finish with this.

Why do I move so easily into passive, tentative language?  Anyone who has read this blog for more than a couple of weeks knows that I spent almost all of my adult life with a deep-seated feeling of unworthiness, brought upon by my hate of myself, through my hate of diabetes.  I have believed I had moved past that, but in a case like this, I find that scratching the surface of this new, self-confident me reveals that weak, insecure 14-year-old child who inhabited my body until after I turned 51.  And if she can still influence my writing, she is still influencing my behavior.

So this simple, yet not-so-simple task has shown me that, for all the positive, confident feeling I have, I still need to forgive and nurture that child within me, in order finally to put her to rest, so that I may move further into my new self-assured self.  Lots of work still to do, but recognizing the problem is half the answer.  Thank goodness.