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Print at Jun 19, 2013 8:12:30 AM
|Posted by DesignBySLS at Dec 18, 2008 1:33:57 PM|
Re: Sorry I am so quiet lately. Promise... I have a good reason. Well.. ok. Not "good" but valid.
Hi Susie! Big hugs back to you!
Thank you Wickham. Some days are better than others. On a pain level 5 I will still drive but I try to avoid it. Anything 6 or more and and I am all too aware that I am a danger to myself an others so I try to keep taxi money on hand, and friends numbers in speed dial on my cell. It's a learning curve as much as anything... I've had to learn to choose what I am doing carefully, and choose the way to do it with the least impact.
Hey LSW... Yeah... It went from not so good to very, very bad pretty quickly. I'm going to try to give you the information you need but it might be a good read to put here so I am going to put it here if you don't mind, and if it is too much then grab the info and edit this ok. Consider this a mini-hijack to my own thread.
I will warn anyone going further that this is a rough read. Period. I have quoted some making it smaller and easily skimmed over for those not interested and pulled highlights of info to leave large size.
Anything directly relating to me and not based on clinical studies and straight information is in blue.
Before I deal with myself I will give you the overall information:
- This is a good starting place. It defines a lot of information. It is not 100% accurate because it doesn't take 12-24 hours for transmission (this is a common misconception), but again... a good starting place.
Here are some pieces of info:
Because Lyme borreliosis is multisystemic, the differential diagnosis has to be broad, including viral infections, aseptic meningitis, disseminated gonococcal infection, rheumatoid arthritis, late stage syphilis, multiple sclerosis, Guillian-Barre, AIDS, systemic lupus, subacute bacterial endocarditis, thyroiditis, Reiter's syndrome, fibromyaligia, chronic fatigue syndrome, and psychiatric disorders. If treated early, the disease may be limited to an asymptomatic rash or only a few days to a week of flu-like symptoms. In its later stages, patients may have multisystemic disease, leading to an inability to work for months to years. The simplest tasks may become insurmountable.
Starting with this I am sure a lot of the challenges faced by people with the issues it resembles are documented.
Symptoms some people have and which are included in the Lyme symptoms:
headaches, photophobia, Bell's palsy, may be unilateral or bilateral, radiculopathic syndromes may also be unilateral or bilateral, with a predominance of motor over sensory symptoms, encephalopathy - subtle disturbances in mood, memory, and sleep (night insomnia or excessive daytime sleepiness), profound fatigue, depression, irritability, concomitant memory loss, word finding problems, blindness , progressive demyelinating-like syndromes (mimicking Multiple sclerosis or Amyotrophic lateral sclerosis ), extreme irritability, Guillian-Barre, progressive dementias seizure disorders , strokes, and extrapyramidal disorders - spastic paraparesis, ataxia, cognitive impairment, and cranial neuropathy.
Case studies have come back with cases that were indistinguishable from an endogenous schizophrenia - paranoia and hallucinations -remitted after antibiotic treatment, agitated depression and psychosis, mild depression, an organic psychiatric disorder - such as an organic affective syndrome or an organic personality syndrome, organic psychoses, dementia,
Patients may have chronic neurologic symptoms for more than one year, with some patients suffering for 10 years or more despite having received antibiotic therapy.
Cognitive impairments among patients with late Lyme disease may be subtle. Some patients may demonstrate initial abnormalities on neuropsychological testing, while others may not. Serial neuropsychological testing before and after antibiotic treatment may reveal significant improvement after treatment.
*insert bad joke about being (&^#(^ in the head here... bad of me but hey... humour keeps me going*
My symptoms include (but are not limited to):
� fatigue - Sometimes the fatigue is relatively mild, allowing me to continue working, perhaps in a diminished capacity. Sometimes, however, the symptoms may be quite severe, such that I have been bedridden due to intractable fatigue for 1-4 days at a time.
� memory problems - Memory problems, too, can be mild or quite severe. I have days where I am "ON" and days where I have a serious case of CRS (Can't Remember S***!).
� photophobia - idiosyncratic responses to particular kinds of light and often am in a very dark home as I pull all the shades. Which of course has my hubby wondering if I am part vampire.
� panic-attacks that seemed to be triggered by sound or light stimulation-especially bright lights that flicker, such as fluorescent lights, headlights of cars moving in the opposite line of traffic - I am ok overall but I must take my glasses off at night when I am driving (which is fine because I see exponentially better at night but I can't see anything at twilight so I wait that one out).
� sound sensitivity - hypersensitivity to and/or idiosyncratic responses to sound stimulation - ordinary conversation can be deafening, any sudden sound, like the phone ringing, and certain household sounds, like the running of tap water makes me shake, get flustered and lose all thought lines.
� sensory sensitivity to touch - I can not explain to you what it is like to want to be touched but to find the touch you once loved abhorrent... and when touching a texture makes you freak out for NO reason.
� sensory sensitivity to taste - Foods may taste abnormally sour or bitter, or exceptionally strong. I can no eat certain peoples cooking as they put too much emphasis on strong flavours. Heck even mild ones get to me at times.
� sensory sensitivity to smell - Smells may seem overly intense and noxious. Good or bad scents are extreme. Goodness forbid I am within a hundred feet with someone who skipped Deodorant... And I can smell corn/popcorn from over 1 km away at times now which is good and bad for my allergy.
� sensory sensitivity to movement/vibration - suddenly and unwittingly developed a heightened sensitivity to vibrations - music, movement of my car, sometimes just the darn world in general. My poor husband and child have had their heads bitten off for brushing against the covers on the bed as they walked by. I felt like they had rammed into the bed, and that my whole body was shaken to the core.
� increased irritability (extreme) - Sudden, intense irritability is most often triggered by sensory stimulation brought on by my sensitivities to sound, touch or light but may also occur unprovoked and seemingly inexplicably.
� emotional lability - unprovoked laughter, crying, smiling... and not always situationally appropriate.
� Word Reversals When Speaking and/or Letter Reversals When Writing - I have a history of dyscalculia and dyslexic complications - but I should note that these did not really crop up until I was 9-10-ish and I remember clearly not having problems reading and writing certain simple things as a child. I remember practicing handwriting my name at one house and I haven't lived there since I was 5-6 years old but by the time I was 11 my printing was atrocious, and I was having a lot of issues.
- 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.
� Spatial Disorientation - lost in ones own neighborhood, on the way to someplace you know? Or... someone repeatedly bumping into things on the left side of their body, dropping things from their left hand despite having no weakness in that hand and occasionally placing objects, such as a milk carton, several inches short of a table edge with the result that they would fall to the floor. - This happens to me all the time!
� One I have not pegged but is partly a number of these things - I get "lost" part way through a page. I have to read, re-read, and go back to a previous page/post to figure out what I was reading if anyone goes on a tangent or even if they don't.
Fluctuations in Symptoms
This can be one of the most frustrating and perplexing aspects of the illness. A patient with late-stage Lyme disease might feel totally drained one day, the next day be able to function almost normally and the day after experience such mental confusion as to be unable to focus on even the simplest of tasks.
Now on top of this mess comes the pain that goes with many chronic illnesses. A good chart is: http://www.tipna.org/info/documents/ComparativePainScale.htm
Once a person reaches a certain level of pain they start to have impaired judgement, thinking, reasoning, and potential minor personality changes.
According to that my good days are a 4-5 (usually more likely a 5), my great days are a 3 (I can rule the world on those days!), and bad says are a 7... and last Friday night was a solid 9 (though I wonder that it wasn't closer to a 10 because I was out cold at a couple points and couldn't sleep when it got back to a 7).
I don't drive when I am at a 6-7 or higher, and I try avoid it at a 5 or higher... The sad part is I only started to drive because I was having an average day that was a 3-4. I miss those ones. I refuse to take a lot of medications related to pain alone because I have a little one and that is not good for her to see... Nor can I drive/function when I take them.
So basically if you put it all together it all makes computer usage more frustrating. God forbid someplace have a flashing animation that moves quickly or is too bright. Outside of the taste and smell sensitivities I get lambasted by the world around me and being on the Internet is no different. Even the forums can be daunting because I have to re-read something over and over and over.
Why is it that our own site overhauls take so darn long? Both complete. Mmmmmm love my .com. Now I love my other one too. But Joe's logo design made it!
What are YOUR favorite veggies?
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Jun 19, 2013 8:12:30 AM