(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
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:
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!