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Post by kiki on Apr 27, 2010 18:22:13 GMT -5
About a week ago I got 3 very tender bump/lumps on my scalp. At times my whole scalp would itch to the point of tears but fortunately only lasted for 5 min or so.
Well last night when I was rinsing my hair my scalp felt cold - as if ice were held directly on scalp- but only where 2 of the bumps were. My hair is now super short and I tousled/rubbed fingers through hair and hundreds (maybe thousands) teeny tiny hair shook out. 2 of the lumps were gone so it's reasonable to assume the hairs came from them.
Today the 3rd lump erupted but this time my hair was dry and I wasn't touching my head. The best way I can think to describe it is like I stomped on one of those big mushroom balls that you see under trees. The kind that when stomped on send a poof of powdery crap everywhere.
I recently (last 3 wks) started rubbing sandalwood oil over scalp and can't help but think it's the reason this happened. But maybe it's a coincidence. Has this happened to anyone and/or has anyone used sandalwood on skin? Oh a few nights I add carrot oil too. I've been using it on face too and it's without question doing wonders for my skin.
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Post by kiki on Apr 27, 2010 16:57:01 GMT -5
I will be ready for the cure. How about it, you too? There are no words that can do justice to how incredible that will be.
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Post by kiki on Apr 23, 2010 21:27:43 GMT -5
Carrie did you have any trouble when you first went raw? I have a hard time with some raw foods- the go straight through me and give me baaad cramps. Do you think my body will adjust after awhile? All I want is sugar and salty junk. I have no right complaining about no energy. Today I shoveled in so much crap, I'm gonna pay for it one way or another. I ate a whole quart of dairy queen soft serve in one sitting and almost a whole bag of sea salt vinegar chips. And that's just what I'll admit to. I'm disgusted.
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Post by kiki on Apr 23, 2010 20:47:07 GMT -5
Nice to read some good new- thanks!
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Post by kiki on Apr 23, 2010 20:42:53 GMT -5
Well doesn't this just suck. I don't think you sound cold. It sounds more like survival instinct. When a person has been bombarded with one thing after another, we can become almost immune to worrying about what ifs and maybes. We resign ourselves to practicalities and do what we know we have to do.
My mom completely recovered from brain aneurysm and everyday when I give my prayer of gratitude, I will say one for you. Kiki
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stevia
Apr 23, 2010 20:16:31 GMT -5
Post by kiki on Apr 23, 2010 20:16:31 GMT -5
I didn't want to read this in case it was news that now steevia caused some new ill. I love the stuff but didn't know there were different kinds. Thanks for the info!
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Post by kiki on Apr 23, 2010 20:08:39 GMT -5
Deep breath. I will help you: a) consider options b) update resume c) do searches d) financially e) keep panic at bay You just let me know what and how. Personally I think it's healthy to allow yourself a rip-roaring, no-holds barred, royal hissy fit to vent some of the fear, regret, anger,etc. Kids have the right idea- stomp, kick, flail around, cry, scream till you feel numb or punch drunk. Then belt out I am Woman and I will Survive till you believe it. Cause you will. Kiki
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Post by kiki on Apr 23, 2010 19:01:10 GMT -5
Toni I re-read your post and had an aha moment. Maybe my mind is turning to fantasy to offset the horror.
It's so great that a post written out of concern has turned into light-hearted silliness.
Thanks guys!
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Post by kiki on Apr 23, 2010 18:52:46 GMT -5
You know, I bet it IS plain ol' boredom. When I think about it it's so obvious it blinded me. I need a replacement for my dance. One of my more ridiculous little daydreams was when the song Raspberry Beret (think that's the name) came on radio. I pictured Prince (or whatever he goes by these days) on stage with little dancing acorns. They had cute little pink berets as their caps. Maybe we can stage a broadway production showcasing the talents of nature! ;D Too bad I have zilch, nada, no artistic skills so an animator for Disney ain't gonna happen! I gotta tell ya, in morg world, a bullfrog singing opera is no less weird than some of the stunts morg gems pull. Maybe we can start a circus and let little morg critters show their stuff. I really need to get a life!
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Post by kiki on Apr 22, 2010 16:18:58 GMT -5
My dr will do anything to help me. She's confident enough to consider options many would not. She's far from reckless but won't hesitate to treat agressively when warranted. She even indulges my fascination with essential oils and herbs and gives me tips.
Ya know, I just realized that I have a better chance getting well with her than Dr Shoe because I trust her. With my life. Of course it could be misplaced trust but the fact remains. I trust her.
I was going to see what Dr James Schaller was all about but just have a nagging doubt about him. Maybe it's not fair to him but when a dr covers it "all" I'm highly suspicious.
I also want to re-visit a link to a clinic that Sidney posted about . I think it was in N.C.?
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Post by kiki on Apr 22, 2010 15:30:17 GMT -5
My brain is so not right! The last 3-4 days I have really really stupid--as in stooopid thoughts. It started with me wondering out of nowhere what would happen if a goat got on my roof. (There are horses and cows nearby but no goats). Some other thoughts: Pickles covering the brick on house Singing pinecones
I'll spare you from the other ones! Mind you, I don't think I actually SEE these things. I just get a thought of them. I asked Mr kiki what it could mean and he said 'You're twisted'?? But then said the obvious guess is the new med (potassium iodide- oral solution). But I looked and losing your mind isn't mentioned as a side effect. Should I be worried, or can I just be embarrassed?
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Post by kiki on Apr 22, 2010 15:02:28 GMT -5
I am thrilled for you Bonnie. Nothing will convince me that this is a meaningless coincidence so don't even try to say otherwise! I'm more encouraged by this than anything Kaiser would say. I wholely believe that it will be a dr like yours (or mine) that will eventually hit on the answer. Not because they're better, etc. but because they're true drs dedicated to their patients health and not their ego and wallet. They dare to look outside of the limiting acceptable box because they care about their patient not peer opinion. This is serious smile stuff!
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Post by kiki on Apr 22, 2010 14:38:23 GMT -5
I'm sitting here blubbering like a little girly girl. I'll have to re-visit that cause it sure touches the heart. Thanks Toni.
Isn't it a sort of comfort when someone else can express your feelings better than you can yourself?
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Post by kiki on Apr 22, 2010 14:25:38 GMT -5
A yr or so ago my hips, butt and back of thighs ached so bad I had to fight to make myself get up and down. When my dr said to take Ester-C and to go after inflammation, I thought I didn't do a very good job of explaining how much it hurt. Happy to admit I was wrong. It helps tremendously. She said to take 2000 mg but I don't know if she based it on weight or something else. I weigh 91 lbs. I'm obsessed with herbal extracts and essential oils and, hand raised, have all but eliminated the pain. I do get achy when it rains. Drown yourself with anti-inflammatories inside and out. Witch hazel (for skin) is fine alone but I add stuff to it for extra oomph. Willow bark is good but it's dark and temporarily stains skin. Bonus- majority of anti-inflammatories also calm creepy crawley itches. Chamomile is easy to take. It has mild taste and can be used as tea or just take drops in bit of water. Enough of it helps to keep sane when your'e down to your last nerve!
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Post by kiki on Apr 22, 2010 13:39:08 GMT -5
Dr. Shoemaker didn't say (at least to me) what he was looking for but he did tell me where to get it because 'They know what I'm looking for'. It was long- over an hour. Boorrring. Plus they locked my head in a helmet-like thing. Kiki
Oh--my report mentioned possible old insult/injury. About 10 yrs ago mr kiki kinda threw me on his shoulder but I kept going and dropped on my head on a parking lot and I got 12 staples in my scalp. OUCH ouch ouch. They didn't even numb it! Lesson- drink chocolate covered shots at your own risk.
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Post by kiki on Apr 22, 2010 12:54:48 GMT -5
Screamin meemies on a biscuit!! You sure have been put through the wringer and back. I'm tickled to see your infectious spunk is strong as ever. Hugs, Kiki
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Post by kiki on Apr 21, 2010 14:50:29 GMT -5
I am soooo glad I told you guys. You helped me accept what my instinct already knew. Now I can move forward without doubting the decision. I can and do value his input but that certainly doesn't make me beholden to him. I could deal with his ego- shoot I would have cheerfully fed his ego with just the right amount of smarm. But of course you're right- nothing excuses abuse. And please believe, he was horrid. I called his office to make sure I understood dosing and he was so over the top hateful I thought he was joking- (albeit a poor joke). He tore into me big time--- and in a sarcastic way. He asked why I bothered with appt if I wasn't going to pay attention and made a point of enunciating each word when telling me how to dose. Followed by him snidely asking if I "got it" so he wouldnt have to repeat it. I felt like a humiliated kid. But the worst is he had the nerve to "suggest" that donating to a certain fund would remind me of how many people would love to see him but couldnt afford to. Yes he said that. I was so taken off guard that when I hung up I kinda crumpled/slinked to the floor and bawled my eyes out. When I spoke to him next, he was 100% different. Said how brave I was, etc. I never knew how he would be and would get so stressed that my stomach literally cramped when I had to talk to him. I knew it was unacceptable but made excuses. I guess I wasn't willing or ready to face the fact that he wasn't gonna be the hero I wanted him to be. I'm not being over-sensitive am I?
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Post by kiki on Apr 21, 2010 12:51:33 GMT -5
Don't know if this is useful but Dr Shoemaker had me get an MRI of brain even though I had one less than a yr before.
MRI of brain without contrast, MRI spectroscopy
Clinical history: history of mold exposure
Findings: Abnormal signal is noted in the left frontal lobe periventricular white matter extending to the cortex in a linear fashion which is concerning for cortical dysplasia. There is minimal asymmetry of the frontal horns of the lateral ventricles, the left is likely larger. Another possibility includes a prior insult of indeterminate nature. At the left inferior frontal lobe, there is the suggestion of thickening of the cortical ribbon. Otherwise, there is no mass, mass effect or midline shift. There are no intra- or extraaxial fluid collections. There is no restricted effusion to suggest an acute infarct. Single-voxel spectroscopy was performed of the bilateral frontal and temporal lobes demonstrates diagnostic spectra.
Conclusion 1. Abnormal signal is seen in the left frontal lobe periventricular white matter in a linear fashion with suggestion of thickening of the cortex of the left inferior frontal lobe. These findings are concerning for migration disorders such as cortical dysplasia. Repeat examination with high resolution T1-weighted images is suggested for further investigation. A second possibility includes an old insult of uncertain etiology. 2. Single-voxel MRI spectroscopy obtained of the bilateral frontal and temporal lobes demonstrates diagnostic spectra. 3. Infratentorially, the mid brain, pons, dura and craniocervical junction are unremarkable. The cerebellum has normal appearance and there is no cerebrellar tonsillar ectopia. Flow voids are noted in the major intracranial vessels and dural sinuses. The pituitary gland is contained within the sella and has normal appearance. Limited examination of the orbits, mastoids, and paranasal sinuses are unremarkable. The cerebellar tonsils are located at the foramen magnum.
I haven't discussed these with dr yet and don't understand what they mean.
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Post by kiki on Apr 20, 2010 21:45:56 GMT -5
I'm having trouble finding the right words for Dr. Shoemaker. First and foremost, my respect and gratitude for him far outweigh any disappointment. Deep down, I know I am responsible for my expectations. At no time did he mislead me. So it's not about his integrity. When he said he didn't treat morgellons, it was very easy for me to justify and shrug off as unimportant. After all, after reviewing my med records he agreed to treat me and my history fit his criteria quite nicely. It was like a gift- how great to leave the mystery of morgellons for a more understood and accepted illness. Ahh... the power of denial! I have come to the conclusion that his patients are a means to an end. He seems more interested in proving his theory than in treating patients individual symptoms. What I mean is his goal is collecting data on certain drugs. Only after that will he address individual symptoms. Now that in itself while not great, isn't a dealbreaker. His attitude however forces me to re-evaluate my options. If he was simply arrogant or rude, I could overlook it. It's his habit of ridiculing patients to tears and veiled bullying tactics that leave me cold. I am leaning toward having my primary and neuro drs use his protocol and tweak it as needed. Gosh I can't finish this now. I am so impressed when I read long detailed posts. I don't know why it's such a struggle to write a good post but I really really suck at it. I'll be back tomorrow with more. I'm sorry for not doing better. I promise I'm trying. love, Kiki
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Post by kiki on Apr 19, 2010 17:45:25 GMT -5
I didn't know you could get it OTC. Mine says SSKI- oral solution. Wonder if it's the same stuff as for topical use?
I just lost a reallllly long post when I went to send it. Why is it always a post with lots of details that took forevver to do? That seriously chaps my tush. Hopefully I will have the energy to try and recreate it after I have dinner. If not, I will do it first thing tomorrow. The potassium iodide is sucking the energy right out of me.
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