Morgellons Support Network
Compassionate Networking for Morgellons Syndrome and Skin Parasite Sufferers
My Story - Hope I'm typing it in the right place!
Hello all.
I'm finally getting around to typing my entire story. I live in Ft. Lauderdale, FL.
I tend to write novels every single time my fingers hit the keyboard - it's 'cuz I type about 120 wpm... as fast as I talk. And if any of you knew me, you'd know that I never shut up! LOL Anyway, I think I'll type this in two parts, because I really wonder if maybe I've had this longer than when I got the lesions learned about the big "M".
I'll type the lesions part first.
I had a total hysterectomy about 7 years ago, hemmorhaged 3x and died on the last go round. They brought me back, but I had brain damage for a good year - couldn't even make it to the grocery store that's 2 turns and 2 minutes from my home! Just lost my short-term, and it's still majorly compromised. I had a PET scan recently (sadly b/c my husband actually thinks I'm making it up that I flat CAN'T remember things!) - and I've had MRI's b/c I get a ton of migraines, and the scans all say my brain's just fine. It's not - but whatever!
About 3 months after my surgery, we took a day-trip to FL's West Coast - Sannibel Island. We mucked around between the ocean and the bay (my son had staples in his head & couldn't get wet). Since I didn't get my hair wet, or really anything besides my feet, I didn't shower before we left. Worst mistake of my life! By the time we got home from the 2 1/2 hour trip, I started feeling as if an entire swarm of bees was attacking me from head to toe. I took a shower to try to wash off whatever was attacking me, but it didn't help. I tried taking Benadryl, and tried every lotion and soap I had, but nothing worked. I finally realized that soaking in water lessened the sting, so I spent the entire night in the tub.
Come morning, I was covered head to toe, front and back including scalp, with what looked like bug bites. My husband thought I was nuts for freaking so bad about a few bug bites. He had, nor does he still have ANY earthly idea how painful that was! I remember seeing little black dots & looking at them on see-thru tape, thinking they must be some kind of insect stinging me. It felt EXACTLY like a bee stings. I looked exactly like I did when I ended up in anaphalactic (sp?) shock from allergic reaction to Pennicillin... head to toe hives. Except these weren't hives.
I went to 15 doctors in total. Every single solitary one (save # 14 & 15) told me this exact statement: "Quit picking and see a psychiatrist". Always that statement, in that exact order. UGH. They accused me of doing this to myself, and my husband bought into it. (How he could do this, after actually seeing it happen to me is a mystery. The guy is of genius level IQ & is President of a thriving company. I think it was just so bizzare that he just couldn't wrap his mind around it, so he denies it exists?)
One ER doctor actually refused to step over the threshold into my room to examine me. He just shouted from the hallway "Quit Picking and See A Psychiatrist"! Another lovely Dr. appt. w/one of the many dermatologists I saw went like this: They had me strip, then the doctor said he'd be right back. Then FOURTEEN people... I'm guessing it was the entire staff there - paced around the table where I was sitting, and filed back out of the room. The head honcho then said to me: (Hmm. Should I really repeat myself again? Yea, I guess I should... Hell, I heard it enough - may as well make you feel as if you're right there with me, right?? LOL) "Quit picking and see a Psychiatrist".
I was so despirate. Finally a neighbor suggested Infectious Disease. I was SOOO sick by this point, it's a wonder I could drive. I went to see them, and when the Dr. walked in I told him that if he was gonna tell me... well, you know - that I'd save us both some time and me some money and just be on my way. Well, to my utter surprise, he told me to sit tight. He then came in with his partner, and they both scanned my lesion-filled bod. They told me that they knew I wasn't crazy, and that I wasn't doing this to myself - but they couldn't help me. They sent me to Dr. #15, Dr. Francisco Kerdel, head of Cedar's Med. Ctr. in Miami.
The fine Doctor Kerdel set right off by giving me a biopsy! Can you freakin' believe THAT? A biopsy??? I begged and pleaded to every single doctor for one, and not one would do it for me. Anyway, they said it came back that I had a parasite of unknown origin. I felt soo vindicated... at least THEY knew I wasn't crazy! They then told me that they had a study group, and asked if I wanted to join. Here's where things got a little sticky. My marriage of 15 years was on the line here for me, b/c I couldn't see myself staying married to someone who wouldn't stand by me in "SICKNESS"! I told them that I wanted to know the name of their study, and they wouldn't tell me. I got a little 'rambunctious', I 'supose, b/c then the doctor came back in and told me that there WAS no study!
He put me on Orap, an anti-depressant. He said it was best for me b/c ppl. find it hard to deal w/the fact that they have a parasite that can't be ID'd or killed. (I later found out that I was being treated for "Delusional Parasitosis"... thanks, doc!)
Anyway, I finally heeded everyone's recommendation to see a psychiatrist... but only b/c I needed marital counseling!!! To my surprise the Christian Counselor I saw actually had 2 patients w/this: A nurse (where I had my surgery), and an attorney. She had taken both cases to the CDC and all she could get from them was to tell us to: SEAL OUR SKIN". Seal it from WHAT?? No answer to that! Just a flat: "SEAL YOUR SKIN".
I really WAS out of my mind by the time I saw her as I literally had not slept, save a little bit here and there in the bath tub, for TWO MONTHS. Yep, I spent almost two whole months submerged in the bath tub! She put me on heavy sleeping pills, and put me on 3 different anti-depressants in 3 months. I gained a whopping ONE HUNDRED POUNDS in THREE MONTHS! (40, 30 and 30). I never overate to gain, and unfortunately - I was so severely sick and fatigued, that I wasn't able to work the weight off. So I've pretty much been lying in bed for the last 7 years sick as a dog and waiting to die.
It's funny that the Psych. is the one who told me the name of this lovely disease. And she suggested I surf the web to learn more about it. I'm sorta embarassed to admit it - but I'd never surfed the web in my life. (I'm 48 now). So imagine how disgu
sted I was to read over and over again that we're ALL delusional, and that we're simply repeating symptoms that we'd read from other people's posts online!!!
All I could keep thinking when all these doctors accused me of doing this to myself is this: WHAT? Did I HIRE an accomplice to get my back for me? I mean, my skin was absolutely uniformly covered with this crap. I would never wish this on anyone, but some of the really, really MEAN, CRUEL docs that I saw? Well, I sorta wish they could have a quick five minute taste of the physical pain and mental anguish I was going thru - and also wish they'd realize what utter devastation they were leaving in their wake by treating me like they did!
I had phlem hanging in the back of my throat & I was spitting the stuff out constantly for months and months. I had little black specs and little sparkles all over my bod. I was using tweezers to get the black stuff off -- wish I'da known then that picking just makes things worse! I saw the fibres moving like a cobra - and 2 of my neighbors saw the fibres moving and parts of insects that came out of my lesions under microscope. WHAT A NIGHTMARE!
Then, as if things could get any worse? I was in the bath tub, minding my own business, when I felt a tickle. I looked down, and to my HORROR, I saw what looked exactly like an earthworm wriggle out of my urethra! I grabbed it with my trusty tweezers - and it was a lively sucker. I was grossed out beyond words! It was about 3" long, and the color and look of an earth worm. I was beyond DONE with doctors, so I took it to the County to ID. As luck would have it, the IDer was out to lunch, so they told me to leave the specimen. They called and asked if it came from a human or animal. Unfortunately I told the truth! They said they couldn't help me & I'd have to take it to a Dr. Well, I was too sick to go back & get it for a day or two - and by the time I went to pick it up - they'd thrown the dang thing away! (what a surprise, right?) Thankfully, my Neurologist believed that I had a worm problem, and he prescribed something to kill em.
I've got to go, so I'll have to take this up later. (Did I mention that every time I sit down at a computer I end up writing a 'novel'? LOL)
Thanks for listening! Love you all and thank you so much for your support & friendship. It means the world to me! <3 Clara
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Replies to This Discussion
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Permalink Reply by Pattie on -
Okay, I'm back. I'll try not to do another humongous novel... can't promise anything tho! :)
I remember my brother flew in from VA to FL, solely so that he could CATCH whatever it was that I was suffering from - and figure out how to cure it when he got home. (I don't think he caught it tho, thank GOD!) Can you IMAGINE a sweeter brother in all the world??? Well, when he got here, he said he wanted to see it ALL. Back then I had my stash of "matchbox" stuff. From black specs, to sparkles, to clear sand-like stuff from my sheets, to fibre cocoons to cobra-like moving fibres, and stuff (yucky) from my stool & nose. Wouldn't ya know it, the day he came, I actually passed a bona fide "tadpole" - the size of a bull-frog's tadpole, I'd guess. It had one eye, and it was a good 3" long and was solid - not just mucous. It wasn't alive, or at least it didn't move - unlike that repulsive worm!!! I searched "Tadpole, Morgellons" and saw that someone else had passed one like it too.
I finally got over that first bout of lesions b/c my beloved brother had prayed non-stop for months on end. One night he prayed that God would place me in a soothing cocoon of healing. That very next day, I was reading the Bible - something I wasn't normally doing at the time. I read that they put Aloe Vera gel on Jesus after he'd passed away... and it hit me. ALOE! It's all natural, and maybe it would "Seal My Skin"! POOF. Every single time I'd get stung by this stuff, I'd put aloe on it immediately. I wouldn't scratch AT ALL. It ended up saving my life! This stuff would grow in the Aloe, and I stopped getting new lesions.
I've finally tossed all the stuff I was saving... figured I was never gonna find the answer & I didn't think it was good to keep the stuff around anyway.
With each new breakout of lesions, I've lost more and more of my eyesight. If this keeps up, I'm afraid I may end up loosing my eyesight. :(
After the 3rd breakout, I asked my husband if he believed that I was infected with something. He said he thinks i WAS infected with something, but that I was causing the new lesions by scratching. Then he came up with the idea that I was sick all the time b/c I was taking too much medicine.. & that's what he's told my kids (14 & 15) - so they think I'm a lonatic for doing this to myself! (Thanks!!!).
Anyway, after I read "The Healing Grapevine" site which said that a new (or new to me) notion is that our bodies are "Hyper Toxic" and we've got to treat ourselves with kid gloves and nurture ourselves back to health - and that we CAN nurture ourselves back to health... I was SO excited. I'd FINALLY FOUND HOPE!!! :)
They said this stuff is stored in fat cells, and that it won't come out on it's own - you have to sweat it out. Well, THAT got me out of bed. No matter how bad I felt, I started walking, then fast-walking, then jogging within a week. STUPID MOVE! I now have a complex tear of the miniscus in my right knee, and I didn't bother to scan the other knee b/c it hurt less than the right, and I wasn't about to have another surgery on either of my knees! (I've had about a dozen abdominals, but my ACL surgery hurt so bad that I just can't bring myself to EVER let another scalpel come near!)
Well, I'd been on Cymbalta for soo many years b/c of herniated disks, bone spurs and arthritis in my neck, which we felt attributed to my near daily horrible migraines. But I started weaning myself off that the second I read that anti-depressants could be making the situation worse. After two months off of that, I've actually started feeling better. I'm sure it's a mix of a ton of vitamins, finally getting some exercise, and trying to eat better.
I still DO take percocets for the pain, b/c if I don't I end up with almost daily migraines. I'd take Imitrex to kill the migraines, but my insurance only gives me 9 a month - and I could easily take one a day! I guess I've just sorta chosen the best of the three evils & stuck with the pain killers. I'm hoping that since I'm feeling better b/c of the major amounts of vitamins, eating better & exercising... maybe I'll kick all this stuff and be able to come off the pain killers too!
I'm also happy to report that I've lost some 14 lbs. Who'd have thought the day would come when I would be HAPPY to find myself under 200 lbs? I used to be 134 before this happened to me! This has really done wonders for my self-esteem... being a cow and looking like a leppar! (LOL - hey... you gotta laugh, or else you'll cry. Right?) People ask me if I'm a burn victim as my skin is so screwed up... it'd probably be easier to just go with that story!
I'm almost done. I went (pretty unwillingly) to my husband's family beach week this past summer - to Destin in the panhandle of FLA. Well, the house was LOADED with the black specs. I ended up breaking out so badly and was so sick, and felt like such a looser b/c everyone thinks I'm insane! The one day I was well enough to hit the beach, I had a boogie board slam into my wrist on a place where previous lesions has left my skin completely ruined. The board actually left a huge "DENT" in my arm. I also got a wierd baseball sized lesion on my lower back/hip, and a HUGE grouping on my upper shoulder (where I couldn't reach to put aloe - and that one felt like someone was pouring acid every time clothing touched it. It was a miserable task trying to put a huge bandaid on that thing, while looking in the mirror - and always missing it. I cried a lot!!)
When we got home my husband brought me to the hospital b/c he thought my arm "dent" was infected. This ER doctor was soooo nice!!! I couldn't believe how kind he was! I told him that I had some sort of new disease that the CDC is looking into, and explained how I got it. He said I knew more than he did about the problem, but that he was just gonna treat them as if they were large burns, as the outer layer of skin was gone and the pain was caused by the nerves being exposed to air. He put on "burn bandaids", and the pain was immediately - I'm not kidding - GONE!
I went to get some at the store, only to find that they cost more than ten dollars a piece. I just couldn't justify spending that much money on a bandaid. I'd spend soo much money trying to find a cure for this, and I don't work. So I sucked it up. At that point, I'd decided it best to cover the things with aloe and bandaids...and I was using over 100 bandaids per day. I was covering them b/c I found that I was scratching them in my sleep, and we ALL know that scratching and opening up your skin is the LAST thing you want to do!!!
So, there you have it. I think I'm done. I'm sure i've skipped some disgusting, horrifying thing having to do with this misery, but with the rediculous brain-fog... I just can't remember.
I DO want to say that I am feeling really hopeful that we can beat this. I have found that jut by NOT concentrating on the problem, and keeping positive about being able to find a cure (or at least something to allow me to have a life outside of my cave... I mean my bedroom). Oh, I DID forget one major thing: REDICULOUS light sensitivity! Give me a break... I live in the Sunshine State!! Is this a joke, or what?
Anyway, I'm done for real this time. I really DO wonder if I caught this LONG before the lesions showed up... I'm almost 100% sure I did, but that's for another day! (Stop clapping, I said I'm done!! LOL)
I also wanted to semi-quote someone's post from one of these support sites. It cracked me up so bad! This woman's sister said "Leave it to you to contract some disease that no one believes in, and that doesn't even have a "Walk" named after it! (She said it with MUCH greater sense of humor - but I wanted to check out with a laugh, and THAT certainly cracked me up!!)
God Bless Us, One and All! <3 Clara
P.S. Also wanted to add that during that initial breakout, we had a hurricane. The power was out for a week, and it was swealtering hot. I knew I'd caught this outside, so I refused to go out. I layed in my upstairs bedroom, under a sheet, stifling hot, and being repeatedly stung - even under the sheet. It was sheer insanity! When my husband finally convinced me to go outside, I looked into our pool and saw sparkles all over - he saw it too, but thought nothing of it. I thought a LOT about it, since I'd been seeing sparkles and black dots with these lesions!
Now, every time we get heavy winds, I seem to start breaking out. I have tried hard not to read about the different horror-theories that are going around. I don't want to look under another microscope or magnifying glass to see this stuff - I just want to get better! It's a sad state of affairs when each one of us has had to learn WAY more than we ever wanted to about our bodies, and about what the government is allowing to be put on our produce, and apparently what the HECK they're spraying on us with crop dusters!!! But with the sparkles and lesions coming with heavy winds, it sorta makes sense to me that it's got to be something in the trees. (We have 3 HUGE fig trees in our back yard, and I'm sure they're holding tons of whatever's been sprayed) I'd rather go with the thought that it's some sort of fungus coming from the trees, instead of going with the big conspiracy theory. UGH. WHO KNOWS???
Okay - NOW I'm done! thanks for listening. <3 Clara
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Permalink Reply by Pattie on
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Also forgot to mention that I spent over two grand getting all my fillings re-done in ceramic. It wasn't till years later that I learned that it was the "sealants" in the fillings that are apparanelty maybe causing the problems! UGH. I never noticed a bit of difference, save the sad state of our bank account from the whole experience!
Clara said:Oops. Clara here AGAIN. Dr. Kerdel was the head of Dermatology at Cedars. Sorry.
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Permalink Reply by Pattie on
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I promise this'll be the last entry. I remembered last night that after the hurricane, there were little black specs everywhere. When I tried to clean them up, it seemed that they were somehow hooked together - always seemed to be 3 specs? SO Bizarre! Then, at night, I was being nailed continuously, but no one else was. Since we had no electricity, I told my husband that I'd get a flashlight, and shine it on myself whereever I was being stung... well what do ya know? There were little "lint" "puffs" flying thru the air, and they were ALL coming MY WAY! I was WAY beyond freaking out!!! It was like a bad cartoon - yea, let's all freak out because "LINT" is attacking us - right? Ludacris and really scary!
My clothes starting stinging me, two of my molars cracked right in two- plain out of the blue (I wasn't even eating anything) & all my shoes began stinging me & gathering black goop on the bottom or in the crevaces of my flip flops. I had to throw away a TON of shoes, but the really scary thing was that I could TELL when some goo had gotten on the bottom of my shoe. It's like this stuff has some sort of mangetic field working or something... Lord I have no idea what I'm talking about here. But it seems to want to come together.
My last really, REALLY bad lesion breakout was so bizzare. If I DID pick off a scab (even if it was just hanging on by a thread), another part of my body would start hurting really badly. I actually had to start band-aiding scabs on so that they wouldn't fall off before the others did. It was insanity times a billion.
I'm probably off my rocker here, but it seemed to me that the scabs were really, really HEAVY. They had a build-up of some kind - gross-but how can a little scab be so heavy that you can HEAR it when it hits the trash can? It's no wonder ppl. call us crazy - I FEEL like I'm nuts, but there's still a scintilla of my brain that knows that I'm actually living thru this Sci-Fi movie!
Sorry for going into such minute detail, but I just felt that if someone had just caught this, maybe it would help to know that whatever bizarro symptom they were having is not new to the "M"-suffering population. I can tell you that it woulda helped me TREMENDOUSLY! If I didn't have such a strong belief in the fact that it's a sin to kill yourself, there is absolutely NO QUESTION, NONE, that I'da committed suicide that first year!! I wish I'd have found this site 7 years ago!
I'm sure there woulda been a better place to post this, but I'm computer illiterate. I have no earthy idea what a "blog" is... or even if I shoulda done one for this?? So, sorry for the LONG post. My goal was to try to help newcomers know that they're not alone.
God Bless Everyone! <3 Clara
Clara said:Also forgot to mention that I spent over two grand getting all my fillings re-done in ceramic. It wasn't till years later that I learned that it was the "sealants" in the fillings that are apparanelty maybe causing the problems! UGH. I never noticed a bit of difference, save the sad state of our bank account from the whole experience!
Clara said:Oops. Clara here AGAIN. Dr. Kerdel was the head of Dermatology at Cedars. Sorry.
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