pain management
July 3, 2008 9:53pm
appt with primary today. he started lecturing me on how to use my pain meds. yes, i've been using more. but not outside of prescribed limits. …
Progress
5 %
nikL’s Profile
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nikL
is feeling OK
About Me
~ in past lives i was a teacher, social worker, organizer. ~one goal in the coming months is taking photos and meeting more artists. i love nature! where i recently moved to is gorgeous, with mountanous terrain and fields. the change of season might be inspirational. ~ this summer i hope to fall in love with the puppy of my dreams. then i'll have a snuggle buddy for the winter :) my plans change often, depending on what is going on in my life. i've always tried to look for opportunities to improve my situation. that being said, finding out how i can be rehabbed and retrained to go back into the workforce is taking some time. but i'm optimistic that i'll be able to find what it is I can do for work that's fulfilling and meaningful. i'm not super religious or anything, but everyday i try to be thankful for what i do have and appreciate the moments i've been given. some days are better than others, no doubt.
Interests
hooked on cuban food, thai a close second. sushi fiend. i'm on a stuffed animal kick. but they gotta be a) huggable and b) squishable enough. guilty pleasures: poor richard's almanac, the national enquirer, caramels. funny: comedy central hound, chapelle (except the way he treated his wife!), wanda sikes, robin williams, mad tv, the colbert report, dave barry favorite foods: mangoes, shrimp, avocados, sushi, hempmilk, sprouts, flourless chocolate cake politics, history of us, art and writing obsessions. in the past, i travelled through most of central america, a large part of venezuela and some of quebec. stateside includes living/working in: FL, TX, MA, PA, DE, NY. i like the tone here at DS of positivity and encouragement that keeps people hopeful for change or empowering management of their condition(s).
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Recent Activity
Thursday
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nikL commented on JimK’s journal entry It's Great To Be Pain-Free! 9:56pm
that's great jim! glad to hear you had some much needed relief :D hugs!…
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nikL wrote a journal entry: pain management 9:53pm
appt with primary today. he started lecturing me on how to use my pain meds. yes, i've been using…
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nikL wrote a journal entry updating 2 goals 1:26am
i woke up early, like around 9am. i was able to wash dishes and make calls to food stamps (for an increase)…
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nikL changed their mood to OK 1:17am
Monday
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nikL replied to their request for advice about staying motivated in the Cerebral Palsy support group 5:43pm
kaite, omg yes i love animals but am too allergic to most. i thought of poodles, but then there's the…
Sunday
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nikL asked for advice: staying motivated in the Cerebral Palsy support group 11:23pm
ok, one of the reasons i joined this site was because it's all about staying strong, which can mean a…
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nikL wrote a journal entry: school, bigotry, plans changed yet again 11:00pm
samantha, my partner, made it clear today that she's not driving me to school twice a week (1.5 hrs…
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nikL changed their mood to Bad 11:00pm
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nikL gave deedeeT a Hug 10:56pm
hey deedee thx for the hug. i hope i got back to you in good timing. have a wonderful day and take care…
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nikL replied to SilenceonWheels’s discussion post increasing spasticity in the Cerebral Palsy support group 10:01am
i use adaptogen herbs on rotation and with scheduled time off to help fight fatigue, plus coq10 (in oil).…
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Journal
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today is ok
July 3, 2008 1:26am
i woke up early, like around 9am. i was able to wash dishes and make calls to food stamps (for an increase) and massachusetts rehab (for setting up …
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school, bigotry, plans changed yet again
June 29, 2008 11:00pm
samantha, my partner, made it clear today that she's not driving me to school twice a week (1.5 hrs each way). so, that hope to get a free …
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Journal Entry for June 29, 2008
June 29, 2008 5:01am
well, i went to bed round 11:30 and woke up about 3ish.
even though it sounds odd to say at this ghoulish hour, my mood is still improving …
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cfids update
June 28, 2008 10:46pm
still rather exhausted, for a few days now. plus pain more of a boogey than usual still.
today i did my phyiscal activity and chores. now, off …
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Hugbook
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Hug
Hi my name is sam i have the same condition as you i have only just found out that i have it and i am trying to find out as much information as i can about it it has fected me in all my joints
Hug
How ya doing today? Take Care. Kati x
Hug
Hey, Northwest Ma huh? We're in the southeast part of Ma. Right in the middle of Providence, Boston, and the Cape. How are things going? I had a tough time last week but I'm back to normal now. Donna
Hug
tthanks hope you doing ok Love Lu
Hug
Hi Thanks for my hug, I hope you're doing well today, I live in the Merrimack valley area of Ma close to NH, Take care and hugs-Stephanie
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Photos
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Goals
View all in progress Goals
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Support Groups
Close Cerebral Palsy
i have spastic hemiplegia although both sides of my body are affected, including arms to a limited extent compared to legs. i use canes and sometimes a wheelchair when in/outside the house.
Treatments
- Hippotherapy Somewhat Helpful
- did it as a child and stretched my hips and strengthened my inner thighs.
- Pilates Working / Worked
- helps with strengthening the core and general stretching around the core so i can sit up for longer periods of time.
- Valium Working / Worked
- i went on this med after dealing with nearly 30 years of anxiety from the brain damage and difficulty with changes in function as i got older. helps with fine motor skills as it also works to relax muscles. also assists in getting my pain med to find the pain. tried xanax, didn't work as well.
- Yoga Working / Worked
- helps with concentration, relaxation, flexibility, low impact strengthening, increased body awareness. with meditation it helps to calm and center me.
- Zanaflex Working / Worked
- the only muscle relaxant i've tried that works, better than the last one which was soma, or the one before that, flexeril. flexeril affected my walking and soma my digestion. the zanaflex brings some mild tremor but i take valium; that seems to help. this muscle relaxant works to help the long acting pain med find the pain better.
Close Environmental Allergies
Type of allergy: Multiple Chemical Sensitivityi became sensitive to environmental chemicals through several different ways: being born premature with an underdeveloped immune system, chronic pesticide and acute mercury exposures, inheritance of weakened immune system, acquiring chronic epstein barr, and also having endometriosis. so, now i can't tolerate petrochemicals, many in drugs, cosmetics, fertilizers, pesticides. bleach is out, so is fresh newspaper ink. scents and fragrances affect my reactive airways and lung function as well.
Open Health Care Reform
i am interested in healthcare reform as a person with multiple disabilities.
Open Chronic Pain
i have chronic pain from cerebral palsy, CFIDS, possible fibromyalgia, chronic lung disease, painful bladder and endometriosis
Treatments
- Chiropractic Adjustment Not Working
- did not work. felt good at first, then more back problems later. perhaps i picked the wrong practioner. he was the only one to accept medicaid patients.
- Cymbalta Not Working
- horrible in side effects. increased anxiety/panic attacks, shooting pain in the back of head, nausea.
- Flexeril Not Working
- the side effects included increased arthralgia and painful walking
- Heat Working / Worked
- this is an excellent temporary relief that lasts for a while depending on the severity.
- Lyrica Not Working
- side effects not worth it. experienced increased pain and confusion. plus i almost instantly needed more to keep the pain at bay after a week of trying it at a low dose.
- Marijuana Working / Worked
- this works well but affects short term memory and increases fatigue.
- Meditation Working / Worked
- works when concentration is possible; need to try more often for more success. do get more relaxed and centered when i do try.
- Neurontin Not Working
- took the pain away, but extreme exhaustion at minimal levels, along with increased depression and confusion
- Oxycodone Working / Worked
- in 20-30 mg per day, some tiredness but not extreme like other meds. moods more labile, for which i take valium. nausea remedied by eating with food.
- Physical Therapy Working / Worked
- gentle pilates, stretching, and yoga style workouts are best for me. using the body ball and large rubber bands for stretching and resistance training were helpful
- TENS Considering
Open Mononucleosis
i had my first bout with mono (epstein barr) when i was 16, and haven't been without chronic cold/flus and EBV flares for more than a few months at a time.
Treatments
- Relaxation Working / Worked
- this works when im having a flare. i try to stick to low impact but strengthening exercises like stretching and range of motion if im in bed for a while.
- Meditation Working / Worked
- helps for centering and positive energy generation
- Dietary Modification Working / Worked
- i try to eat antiinflammatory foods as much as possible. this includes taking out many common foods like wheat dairy sugar refinedprocessed goods. also im big on veggies and fruits nuts and seeds brown rices and beans and fish and eggs. i try to go organic as much as my budget will allow.
Open COPD & Emphysema
i have adult reactive airway disease. i cannot tolerate most common chemicals for cleaning, pesticide, formaldehyde or fragrance. dust is bad too. i also have atelectasis that makes it difficult to breathe sometimes. this summer i'll find out what that's from.
Treatments
- Albuterol Working / Worked
- works sometimes. i use it when going to the supermarket or library or anywhere else where there could be offensive chemicals
- Breathing Exercises Working / Worked
- after talking to practitioners it did help to remind me of ingrained breathing patterns
Open Endometriosis
i've had endo for at least 8 years. pain before and after periods, heavy & long flows up to 7-9 days, painful sex and diahrrea during my monthly.
Treatments
- Testosterone Working / Worked
- the closest treatment to this would be danazol but i prefer the hormone unadulterated. at a certain level of administration they arent noticeable. good news period slowly stopping with less endo effects.bad news (for women, depending) medical menopause some acne and unwanted hair growth some hair thinning
Open Epilepsy & Seizures
i found out i had seizure tendencies with my first eeg this year.
Treatments
- Lamictal Working / Worked
- helps with mood, pain perception and reducing seizure activity. must take low dose and watch for sudden changes in mood that happen infrequently and limited in their duration. still, the drug helps me to function much better, at 80% instead of 40-50%
Open Post-Traumatic Stress Disorder
i have ptsd from rapes, threats, homelessness, emotional/mental abuse
Treatments
- Art Working / Worked
- it's a creative way to tap into my subconscious and get things out in a way i can control and also heal
- Cognitive Behavioral Therapy Working / Worked
- to check my thoughts, and re-examine what is fear and what is reality
- Guided Imagery Working / Worked
- i use this when in crisis or need something to distract me right away. it helps me to keep cool and calm.
- Music Working / Worked
- some music is bad, other helps to distract or strengthen me, my core or soul
- Psychotherapy Working / Worked
- this helps to a certain extent, but to have to talk about it too much can be triggering at certain times. i've had to know my boundaries, and be aware when to 're-guide' therapists into helping me instead of me educating them or following into their conceived notion.
- Supportive Care Working / Worked
- support groups can help a lot
- Talking Working / Worked
- when i need to
Open Fibromyalgia
fibro from neuromuscular conditions (cp and cfids).
Treatments
- Acupressure Working / Worked
- Vitamin B12 Working / Worked
Open Stress Management
i've always thought about stress management, but wasn't sure what would really work for me. i hope to join this site for insight, info and hoping to help others as i fumble my way through life, lolz
Treatments
- Physical Exercise Working / Worked
- passive stretching, elliptical, stationery bike, some modified yoga/pilates helps
- Breathing Exercises Working / Worked
- learning how to breathe from my diaphragm instead of my throat gives me more oxygen to think clearly and be sure to expel all the stale air from my lungs. to keep focuses sometimes i try to meditate with some positive images or thoughts
Open Blindness & Visual Impairment
retinoschisis, nearsighted in one eye
Open Codependency
i've been in a cycle of codependent relationships starting with me and my family.
Treatments
- 12 Step Program Working / Worked
- worked somewhat to understand some underlying issues present in my family and affecting me to this day as a child of alcoholics
- Reiki Working / Worked
- helps to refresh and renew my spirit
- Talking Working / Worked
- i hope that DS dialogue with peers will help
