MIND General picture * ``In one U.S. study of 27 patients with late neuroborreliosis, 33% were depressed based on their scores on the Minnesota Multiphasic Personality Inventory. 89% of these 27 patients also had evidence of a mild encephalopathy, characterised by memory loss [81%], excessive daytime sleepiness [30%], extreme irritability [26%], and word finding difficulties [19%]. Controlled studies indicate significantly more depression among patients with late Lyme borreliosis than among normal controls and other chronically ill patients.'' 
* ``A diagnostic tip in favour of Lyme disease as the cause of the depression and irritability might be concomitant memory loss, word finding problems, or a concomitant polyneuropathy.'' 
Light. * Photophobia [keynote]; must wear sunglasses or glacier glasses, even indoors, even at night.  * Feeling of faintness or dizziness form exposure to fluorescent lights, making it difficult to go to supermarkets or other public places.  * Panic attacks triggered by light stimulation, esp. flickering bright lights.  * Nausea from flickering bright lights [fluorescent lights, TV or computer screens, strobe lights during EEG testing or the headlights of cars moving in the opposite line of traffic]. 
Sound. * Ordinary conversation perceived as deafening; wears head phones and puts pillows over his head to block out the sound.  * ``To one woman even the sound of another person's breathing seemed unbearably loud. In her case, the sound sensitivity also included vertigo, nausea and nystagmus in response to sounds. Any sudden sound, like the phone ringing, and certain household sounds, like the running of tap water, could cause her to fall or retch. This peculiar short-circuiting of the inner ear's auditory and vestibular functions is known as the Tullio phenomenon. This phenomenon has been deemed pathognomonic for syphilis but, as it appears, can occur in Lyme disease as well, and thus provides one more example of the `new great imitator,' Lyme disease, imitating the old `great imitator,' syphilis.'' 
Smells. * Smells seem overly intense and noxious. 
Taste. * Foods taste abnormally sour or bitter.  * Or the reverse: loss of taste on left side of tongue. 
Touch * Regional or generalised hyperaesthesia of skin to touch or temperature.  * Sensitivity to touch; ``the bed sheet resting lightly on my toe would make the toe ache, like a toothache.''  * ``Even the thinness of a sheet was too painful for my legs.'' 
Vibrations. * Abnormally heightened vibration sense, eg, thinks car were vibrating with unusual violence. 
Emotional lability / mood changes / irritability.
* Accompanied by headache and neck stiffness.  * Sudden, intense irritability from sensory stimulation [sound, touch, light] or occurring unprovoked and inexplicably.  * Sudden, unprecedented fits of violence.  * Uncontrollable outbursts. ``A woman, typically reserved and eager to please, became uncontrollably irritable one day at work and found herself yelling at her boss in a most uncharacteristic fashion.''  * Sudden bursting into tears from trifles.  * Fluctuations from marked agitation to severe depression with suicidal threats.  * Rapid mood swings [from grandiosity to sudden tearfulness].  * Violence; striking children and breaking furniture.  Homicidal ideation, urges, and behaviour occur in some of these patients. Some adult patients describe struggling to not act on these urges. When these patients act on a homicidal urge, more commonly it is a child becoming assaultive to a sibling. Dissociative episodes sometimes occur with these patients, occasionally accompanied by aggressive behaviour and loss of memory. 
Cognitive impairment - Lyme Fog
* Short-term memory problems, word-finding difficulties, dyslexia, problems with calculations or inability to concentrate.  Many Lyme patients state ``I feel like I have become dyslexic.'' Impairment of reading comprehension is an earlier sign with the later addition of auditory comprehension difficulties. Acquired left/right confusion is seen with some of these patients displaying what appears to be an acquired Gerstmann's syndrome or some variant of this syndrome.* They have problems with calculations and often complain of errors when trying to calculate their checkbooks. Fluency of speech is a very significant problem. When interviewing these patients, this is a clearly evident symptom. Stuttering is seen in many of these patients.  [Boy aet. 5] ``I would mix up stories and get cranky. I tried to tell Mom that my brain was `sticky', but she didn't know what I meant. It didn't hurt, it just wouldn't work. I would climb up on the sink and put a wet washcloth on my head. On those days, my behaviour was hyperactive and I would stutter.'' 
``The kicker, though, was the virtually unexplainable difficulty in writing, typing, speaking, and thinking. I'd use the wrong letters, hit the wrong keys, stutter, reverse things, and find myself unable to say the right word. Everyone does this occasionally, but this was consistent and unrelenting. I felt like something poisonous had taken over my brain.'' 
On interview, patients with Lyme encephalopathy tend to be vague and disorganized in the presentation of the history of their illness. This is despite their close attention to their symptoms and having recounted them many times before. Although in most cases memory of discreet events - tests, dates, diagnoses, responses to medications -- is intact, the patient is unable to recall them spontaneously or organize them in temporal order. They may be unclear as to their chief complaint. They may completely lose track of what they were saying, sometimes repeatedly, or of what the question was. They may get off on a tangent and have trouble re-orienting themselves. Frequent prompting and refocusing will be necessary. beginning the interview with an open-ended question like ``Tell me what the problem is'' will allow these qualities to become clear.
However their experience is different from that of ADD, in that rather than having the experience that there are many thoughts competing for attention, the Lyme patient has difficulty bringing any thought into clear focus. They experience difficulty thinking. One patient described it as the universe ending six inches from his face. He can't process information that is not immediately apparent, immediately experienced. Another said that when he tries to think about something, or figure something out, all he can do is repeat the question - he can't get to the meaning. One patient, a physician, described it as a ``mental intention tremor'' -- the more she tries to focus on something the more out of focus it becomes. 
* Brain fog. Problems with facial recognition.  * Spaced out, as if in a fog.  * Difficulty remembering details such as names or appointment times. Engaged in new compensatory behaviour, such as daily list-making.  * Compensatory compulsions are common in an effort to compensate for the memory deficits.  These [Lyme disease] patients generally come to the office disorganised [despite a supreme effort to be organized], unable to give a coherent history. They will bring copious notes, which are invariably in the wrong order.  I used to have a quick mind and a good memory, now I was dependent on notes plastered everywhere so I could remember things. 
Mistakes in speaking and/or writing
* ``Patients with no prior history of dyslexia have found themselves writing letters backwards, reversing numbers or routinely reversing the first and second letters of a word.''  * Mistakes in time: says ``tomorrow'' instead of ``yesterday'' and vice versa. 
Spatial disorientation - sense of position [``spatial dyslexia'']
* Loses his way in well known streets.  * Difficulty with spatial awareness of where front and back doors are in one's own house.  * Disturbed sense of position. ``Repeatedly bumps into things on the left side of her body, drops things from her left hand despite having no weakness in that hand and occasionally places objects several inches short of a table edge with the result that they fall to the floor.''  * Disturbed sense of position, esp. in hands; grasps the air when reaching for objects.  * ``Everything around me looked strange. The people sounded like cackling geese. Everyone looked like they were in fast motion, like someone had sped up the projector. Every time I turned, I was dizzy and disoriented. I was sweating, and completely lost.''  * ``I was getting lost driving to places that I had been to hundreds of times.''  * ``I was getting lost in my own neighbourhood when I tried to drive.''  * ``I forgot where I was on my way home.''  * ``Difficulty `recognizing' things when driving - familiar landmarks lost their meaning; I stopped at green lights, made wrong turns or drove past my destination, even in territory close to home.'' 
* Musical hallucinations with a sudden onset and taking the form of patriotic or operatic music.  * ``I was hallucinating both visually and auditory. I heard phones ring when there were none. I saw shadows twist into menacing shapes. I heard voices talking. At night, I saw flashing lights fill my vision, and my ears were constantly buzzing with static and ringing. I felt for the first time that I might be truly going mad.''  * [Upon awakening in the night] ``A skeleton hallucination in black and white, looking at me, grinning a very toothy smile, head cocked, propped up by one arm.'' 
* Intrusive obsessional thoughts with checking; horrific images of killing others; excessive bathing.  * Intrusive images which are more commonly of an aggressive nature but sometimes can be of a sexual or other nature. Occasionally these images are of a homicidal nature.  * ``My mind was a hopeless jumble of uncontrolled thoughts - images and sounds that haunted me. It was as if several minds had been merged into one, and there was no way to sort the images.'' 
* Chronic morbid dread of vomiting [without actual emesis].  * Panic attacks in sleep.  * ``I woke up several times in pain and experiencing panic attacks.''  * Gerstmann's syndrome: inability to perceive a stimulus applied to the fingers, impairment of the ability to write, inability to do simple mathematical problems, and confusion of laterality of body.
The majority, over ninety percent, of the children that we have treated complain of headache. The headache, in a few cases, has been very acute accompanied by papilloedema [oedema of optic disk] but in the majority of cases the headache comes on gradually, becomes quite persistent and does not respond to over-the-counter analgesics. In addition to the headache, the children complain of photophobia, dizziness, a stiff neck, backache, somnolence and, those that are in school, have problems with memory and difficulty concentrating. Some patients have developed progressive weakness.
The parents complain that pre-schoolers develop mood swings and become very irritable and they see a personality change. Among the children that are school age and those who are in adolescence, chest pain is a very frequent complaint. At least seventy percent have complained of chest pain. About fifty percent have complained of abdominal pain. More than half the children have arthralgia usually involving the knee and sometimes the wrist. Other complaints include palpitations, tingling, numbness, rashes that come and go, usually malar [cheek] rashes, and sore throats that are excruciatingly painful.
It is easy to see how this long list can be very non-specific and many of these children are thought to have functional problems. 
Typical combination of features * Joint pain + major cognitive dysfunction [esp. short-range memory] + major sleep disturbances + terrible fatigue + sensory hyper-acuity.
Alternating states * Perplexing fluctuation in symptoms. Spry and energetic one day, drained and confused the next day. May be brought on by exertion, stress, or exposure to sensory stimuli, or come without apparent cause. Cannot make plans due to the unpredictable nature of the fluctuations.  * Days of near normality alternate with days of profound debility.  * The symptoms shift in kaleidoscope fashion from one hour to the next in the same patient and seldom present identically in two different individuals.  * ``Days of hope and black despair coupled together.''  * ``I thought I was slowly going crazy, never knowing what the next day would bring.'' 
Suddenness * These patients can become suddenly suicidal.  * Sudden worsening of symptoms.  * Sudden inability to remember how to transfer calls [in a woman who had been a telephone switchboard operator for 20 years].  * Worse by any sudden sound.  * Sudden intense irritability.  * Sudden soreness of sinuses and throat, then disappearing, then sore again in a seemingly rhythmic way.  * Sudden, complete inability to swallow.  * Awakened in the middle of the night by severe arthritic pains over entire body. Pain sudden, dramatic, and excruciating. Pain gone when waking the next morning.  * Sudden changes in stool consistency from normal to putty-like, to constipation [stools have to be removed mechanically], etc.  * Sudden arrhythmia.  * Sudden falling to the ground.  * Sudden paralysis. ``As I stood in front of the bathroom sink brushing my teeth, I suddenly lost the use of my right arm and hand. A quivery, ticklish feeling travelled like lightning from the shoulder to the fingertips; paralysed, the arm dropped down into the sink, hit the enamel hard and broke the skin.'' 
Neurological * Left-sided hemiparesis when waking up.  * ``The left side of my face was paralysed with the numbness extending to the left side of my tongue and down my throat. Also, my left side felt weaker and my left lung felt somehow affected - cold and heavy.''  * Intermittent paraesthesias.  * Nerve pains severe, burning, tearing, migrating, with characteristic exacerbations at night.  * Clumsiness; ``ataxia is common in these patients who are often clumsy, which leads to frequent accidents.''  * The close resemblance between neuroborreliosis and certain neurological conditions has been explained thus: ``When the human brain becomes inflamed, cells called macrophages respond by releasing a neurotoxin called quinolinic acid. This toxin is also elevated in Parkinson's Disease, MS, ALS, and is responsible for the dementia that occurs in AIDS patients. What quinolinic acid does is stimulate neurons to repeatedly depolarise. This eventually causes the neurons to demyelinate and die. People with elevated quinolinic acid have short-term memory problems.'' 
Energy * ``Too fatigued and sore to even think about moving around.''  * ``The best description I can think of for the misery of acute Lyme disease is a combination of debilitating mononucleosis and severe arthritis in the knees and elbows.''  * Debilitating fatigue & periodic attacks of left-sided paralysis. 
Sleep - Night aggravation * Excessive daytime sleepiness.  * Falling asleep while talking with others.  * Falling asleep at work.  * Narcolepsy. ``At first, I would fall asleep spontaneously and unpredictably a few times a week, but over the next three months it climbed to four hundred times a day. I would fall when this happened.''  * Can not sleep at night, can not wake up during the day.  * Apnoea - a sudden `gasping' for air just before falling asleep.  * Sleeping disorder. ``He [13-y. old boy] would thrash around at night disrupting his bedding, knocking over lamps and rearranging things during the night. I never actually saw any of these episodes but saw the result of them in the morning.''  * ``When I did sleep, it was a tortured sleep where I would toss and turn and tear at my covers. I despised warmth and craved cold. My bed in the morning would look like a war zone.''  * ``In the beginning, I was horrified to awaken knowing that I was still alive and had not died in my sleep. What a great cop-out, I would think, except the nightmares were actually worse than reality.''  * ``Woke up angry in the night that I hadn't just died.''  * ``I experienced night terrors, where friends that had died in the last twenty years gathered around my bed nightly, smiling and waving for me to come with them. ... I hated to go to sleep at night because of my dead friends appearing.''  * Early morning insomnia with nightmares.  * Sleeplessness due to pain in kidneys.  * Sleeplessness from stabbing pain in feet. 
Pains * Burning [pain] seems quite specific [to neuroborreliosis]; the patient describes a sensation that a blowtorch is burning the skin.  * Feeling as if muscles and nervous system were on fire.  * ``The burning pain in my spine was so bad that I broke out in sweats day and night.''  * Sharp shooting or stabbing pains. 
Food & Drink * Anorexia.  * ``Eating disorders are common. Invariably these patients either gain or lose weight. Sometimes massive weight gain is also seen.''  * Increased thirst.  * Intolerance for alcohol. ``Most patients state, `I don't drink any more'.''  * Exaggerated symptoms or worse hangover from alcohol. 
Temperature * Great chilliness.  * Low body temperature [slightly below normal].  * Profuse sweating.  * Unexplained sweats. Night sweats. Sweating even in cool temperatures. 
Weather * Symptoms worse in low pressure weather systems. 
Miscellaneous * Lymphocytoma [small solitary bluish-red plaque or nodule], particularly at ear lobes or nipples.  * Delayed development, failure to thrive in infants. 
Vertigo * Sensation of whirling motion of oneself or of external objects.  * Ménière's disease.  * Vertigo with drop attacks of the Tumarkin type.*  * Motion sickness.  * Balance severely off; would fall when closing eyes.  * Vertigo from even slightly turning head; ``the world would swim if I just moved my eyeballs.''  * Floor feels as it were rolling beneath the feet, or as if one were on an elevator or a boat, going up and down in waves. 
Head * Headache frontal or occipital; intermittent [duration] and fluctuating [intensity].  * Feeling of pressure behind eyes, pain < moving eyes.  * Sore/tender areas on skull/scalp area.  * Pressure migrating from vertex to occiput when turning head.  * ``When I would move my head, there was a disturbing gurgle as I heard bubbles move around inside my head.'' 
Eyes & Vision * Conjunctivitis.  * Intermittent diplopia and visual blurring.  * Diplopia & vertigo and nystagmus.  * Triplopia in right eye.  * Sparks, spots, waves, floaters before eyes.  * Sensation of a foreign body in eye[s] [keratitis].  * Twitching.  * Bloodshot eyes.  * Vision reduced to a circle directly in front of eyes; peripheral vision just a blurry swirling mess of lights and images.  * ``Seeing `trails' of objects, i.e. my own moving limbs or doorways I walked through.''
Hearing * Impaired hearing [bilateral] & fatigue, headache, or arthritis.  * Hearing loss & tinnitus. 
Face * Bilateral facial nerve palsy.  * Muscle twitches in face.  * Pain in face, teeth, articulation of jaw, and masticatory muscle.  * Swelling around eyes.  * Facial redness.  * ``My chin hurt, and felt `ticklish' - as if something were blowing on it.''  * Audible clicking of jaw when speaking or eating.  * ``Around my mouth, all around the lips and down into the chin, a vibrating, biting, humming itch, as though there were a thousand bees swarming over my lips and the majority of them were stinging.'' 
Mouth * Numbness/tingling of face or tongue.  * Weakness tongue.  * Sore spots on tongue.  * Speech; slow and laboured; slurred; poorly articulated. 
Throat * Must drink in order to swallow food. 
Urogenital * Irritable bladder; trouble starting/stopping; frequent urination; voiding dysfunction.  * Urinary retention followed by paralysis of lower limbs.  * Numbness genitals. 
Chest * Short stabbing pains in chest lasting only seconds.  * Dry, non-productive cough.  * Awakening in middle of night with chest pains and pain and tingling down my left arm.  * Sensation as of hot water were being poured into lungs. 
Back * Stiffness of nape of neck & headache, pain in joints and/or muscles, or fatigue.  * Weakness nape of neck.  * Tired feeling between shoulder blades, as if neck wouldn't support weight of head.  * Jabbing pain in the back as if being kicked in the kidneys. 
Extremities * Wandering joint/muscle pains [without swelling]; lasting only hours or days in a given location.  * Pain in joints only on motion.  * Joints sensitive to pressure.  * Localised joint pains/swelling involving mostly the knee[s], and to a far lesser extent the ankles, shoulders, and elbows.  * ``I kept looking down at my upper arms to brush off the hair or cobwebs on them, and realised there was nothing there.''  * Sensation as of a band pulled tightly around [right] lower arm halfway between wrist and elbow.  * Tendon problems - hands/fingers temporarily lock into unusual positions.  * Carpal tunnel syndrome; & numbness of fingers < during sleep or using hands.  * Intention tremor hands.  * Fingers on both hands fumble and cannot pick up small objects.  * White spots on fingernails; ridges; brittle nails.  * Deep, aching, burning pains in the hamstring muscles when sitting; sits on the very edge of a seat; cannot bear touch or slightest pressure on hamstrings.  * Leg joints give out or wobbly, rubbery legs. Unable to walk.  * Sensation of a tourniquet wrapped around right leg.  * Restless legs at night in bed, resulting in sleeplessness.  * Throbbing pain in ankles and in long bones in calves and shins; ``not an ache, but a feeling that someone had scraped the skin away, thrown salt into the raw tissue, then set it on fire.''  * Severe pain in balls of feet; painful to put any weight on feet. 
Skin * Warm, wet or cold sensations on skin.  * Regional or generalised hyperaesthesia of skin to touch or temperature.  * Excessively itchy skin. Urticaria. 
* During Tumarkin's episodes or Tumarkin's otholothic crisis patients suddenly fall to the ground without prior warning and without losing consciousness. Thought to be caused by a sudden change of the otolithic organs, the condition is not uncommon in the later stages of Ménière's disease.
Sources:  Lyme Disease, Symptoms & Characteristics; A compilation of peer-reviewed literature reports. Website Canlyme.com.  B.A. Fallon et al., The Neuropsychiatric Manifeatations of Lyme Borreliosis. Website LymeNet.org.  Jenifer A. Nields, The Clinical Experience of Lyme Disease: Patient Perspectives and the Psychiatrist's Role. Website LymeNet.org.  T.M. Grier, The Complexities of Lyme Disease. Website Canlyme.com.  Lyme Disease Symptom List. Website Lymedisease.org.  Virginia T. Sherr, The Physician as a Patient: Lyme Disease, Ehrlichiosis, and Babesiosis; A Recounting of a Personal Experience with Tick-Borne Diseases. Website Ilads.org.  Audrey Stein Goldings, Controversies in Neuroborreliosis. Website Ilads.org.  B.A. Fallon, Late-Stage Neuropsychiatric Lyme Borreliosis, Differential Diagnosis and Treatment. Website Wadhurst.demon.co.uk.  R. Bransfield, The Neuropsychiatric Assessment of Lyme Disease. Website Mentalhealthandillness.com.  Lyme Disease: A Diagnostic and Treatment Dilemma; Witness List, Oversight Hearing for the Senate Committee on Labor and Human Resources, August 5, 1993.  Personal Stories. Lymealliance.org.  Faces of Lyme Disease. Lyme Disease Foundation.  Dorothy M. Pietrucha, Neurological Manifestations of Lyme Disease in Children. Lymeallaiance.org.  Marian Rissenberg & Susan Chambers, Distinct pattern of cognitive impairment noted in study of Lyme patients. Lyme Times, Vol. 20, January-March 1998.
Thanks very much for this post Melanie...I was surprised to see the facial recognition problem as that is definitely one of my embarrasing ones! Thought it was just me...but is part of the lyme. For the longest time I thought it was just some form of autism, but finally learned the truth.
Thanks for posting this, i just read the first part the eyesight part one of my first symptoms (the one 15 ducks overlooked)
but I am AMAZED....guess what the strobe from the EEG made me sick for hours after...the tech didnt know what to make of it at the time!!!! i thought for sure i had a brain tumor.
Cars in the opposite lane still make me dizzy.
i think i really really needed this list tonite,
thanks so much :-)
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Melanie, you're on a roll tonight! Wonderful list here too; learned a lot.
Melanie, could you go back in and edit only those really LONG paragraphs for us neuro lymies.
Rest of it was easy to read with the use of . for distinguishing from 1 thought to another....no changes there, just the really long ones I believe were at the very beginning and scattered here and then.
After you've done that, would you PM to let me know this? Then I'm going to print off for my info.
Also, would you copy/paste this web page to Treepatrol's NEWBIE LINKS?
The symptoms and symptoms study are just to important for them to go off the boards.
Thanks for bringing these both up after 2 years. Melanie, you're quite the woman; thanks for sharing your talents with us all.
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Member # 14689
People have to understand too that not allare alike, some are very mild and some severe, some only have a fraction of these symptoms or like me, I mostly had the neurological issues, pain and temperature things. I had a doctor say I could not have a tick born disease because I didn't have arthitic knees. What? My symptoms more closely resembled MS or Lupus.
The big thing that made me believe I had a TBD was my strong positives for Babesia and the strong IgG for Bb and Indeterminant for IgM Bb.
Most agree that if you have Babesia, chances are you had or have Lyme and other coinfections.
Anyway, just thought I'd chime in..
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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am posting this here in medical so that anybody new can read this.
it's an excellent source of symptoms for many of us and more detailed.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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- I'm so glad they included the vestibular manifestations (balance, light and sound). That's me to a tee. And I know I did not take part in that study.
I'm surprised to have not found seizures listed, though. (Or maybe I just could not see it?)
Unfortunately, the source for this ( http://www.minimum.com ) seems to be a homeopathic site - and no sign of an actual author. It's wonderful that they understand and go to lengths to learn more but
I would so appreciate this sort of truth being "allowed" into the old-school medical publications, too.
Because of the source, some of those in the lives of those with lyme might take this less seriously. It's important to be aware of that when sharing this with others. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Is it just me, or is this list sort of depressing? Albeit, good to get the word out how far reaching this illness can be...
Posts: 566 | From West Coast | Registered: May 2008
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Honored Contributor (25K+ posts)
Member # 12673
If we find such facts depressing, imagine how (regular) doctors - or our families - hear us.
After watching "Under Our Skin" what used to be depressing facts become empowering facts. The truth is not always pretty but once we face the facts, they can loose their emotional kick.
I find it so validating and empowering to see some professionals put it all together and, as hard as it can be for us to see some of this, it helps me keep sane by keeping in mind what is real - the reality is that this IS terrible.
And I hope that reality will improve for all affected.
Awareness and the nitty gritty details are so important in prevention and also in acceptance of those whose lives have changed because most doctors ran from this hard reality.
These harsh facts fuel my perseverance and the ability to see myself in a better light. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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