Lynette talks about PWD

PWD? What does that stand for?


Persons with Disabilities. The abbreviation is ironic, though. The idea was to stop using labels and start using "people" first. The initials have a risk of becoming a label themselves.

I was part of the disability rights movement, promoting things like the. Americans with Disabilities Act, for example, before I realized I was a person with disabilities. Did you know that before the ADA was passed in 1990 it was legal in this country for a store owner to exclude a person who used a wheelchair because they took up too much room in the aisles? I went to a public meeting in Kansas City in the late 80s and heard one person after another tell of the discrimination they faced because of their disability. The ADA is a matter of equal justice for people with disabilities.

Most of my early career, like Paige's (Paige is the heroine in More Than a Job), was with people with developmental disabilities. We were working for the right of people to live in the community and not in institutions. While group homes as opposed to individual apartments are not always the best solution, sharing a house and staff can work for some folks, so that is the setting that Paige works in. I have certainly seen poor health care for people with disabilities. Some of the people you run into don't give the same level of health response, and as in the story, sometimes advocacy with them has to be pushy.

My disability is a chronic pain condition. Does it impact my life day to day? Sure. Does it keep me from living the life I want? No. You adapt, cope, figure out better ways to do things. I see that same tenacity and success to live independently in most of my friends who have disability.

The belief in the disability justice community is that every person has a right to community life and their disability is part of who they are. Think of disability as a characteristic like nationality, gender, height, weight. Each of us is different, and most of us who live long enough will experience disability at some point in their life. It is part of the whole of who we are.

 
Lynette Endicott, Author
Desert Breeze Publishing

"Where starting over is the path to romance".

Just Released - More than a Job

Coming August 21, 2012 - Animal Instincts

First of the Time after Time Saga with Tami Dee

Coming October 15, 2012 - Return of Joy

http://www.lynetteendicott.blogspot.com/
http://www.lynetteendicott.com/

My Summer of ups and DOWNS (so far)

I really did take the time to write a decent blog post for this week. Unfortunately, my effort to poke fun at my experiences with the medical profession came off sounding like a cruel dig at the doctors so I deleted it. Instead I'll summarize without the humor and hope you don't have similar experiences.

My OBGYN insists that I'm pre- menopausal (whatever that means . . .) also advised me to stop stepping on my bathroom scales. The other advise given doesn't warrant mention more than it felt all wrong. So I got a second opinion.

The second opinion recommended that I make a drastic diet change to meat and veggies and when asked for how long he merely smiled.

Following their advice, I've experienced what a family member calls an anorexic weight loss.

Two months later, I've quit taking the prescriptions, decided to ignore the diet changes and FINALLY start to feel better. Of course the doctors are both fuming---how dare I take my health into my own hands?

The moral to all this? Don't let doctors meddle with nature. It will, at its own pace take care of itself. Will the weight come back on? Oh, I'm sure I'll find it over the coming years!

A Wheelchair - not Deaf, Dumb or Blind

Why is it that when I occupy my wheelchair, people assume that I’m deaf, dumb, and blind? Are you?


I am not deaf. I hear things you miss every day, my child’s tears for example. When was the last time you listened, really listened to anyone’s tears?

I am not dumb. Dumb, according to Merriam-Webster’s 11th Edition means lacking the power of human speech. That doesn’t mean yelling or even raising one’s voice. Hopefully it means the ability to communicate with the family member or friend who’s tears you’ve just listened to.

I am not blind. I see the pain on the child’s face when you ignore him. I see the friend, whose chair you appear frightened of. I see their pain at your lack of acceptance. I see you pull into the handicapped parking space and jump out of your car to run, yes run, into the store. I see the sweet old man that is forced by your disregard to limp twice as far to reach the store front. I see you dodge around the corner, apparently embarrassed to acknowledge me.

Oh yes, I may occupy a wheelchair, but I am very able. Able in ways you cannot conceive.

Answering questions about MS

Catherine,

You asked what the symptoms of MS are. I could write a list here, but it would be incomplete. Visit MSAA site (links on this blog) and type in "symptoms" in search bar or a more complete reference is found by typing in "Winter/Spring 2009". I found the Symptom Management Update invaluable.
Also, you and M. might find "Fall 2009" -Men's Health- valuable.

MS Diet

Fruits and Veggies should be organically grown or washed to remove chemicals.

NO
sugar, diary, gluten, wheat, oat, barley, spelt, rye. (Sprouted okay)

Safe
Rice, Millet, Quinoa, and Buckwheat

Helpful: No chemicals or preservatives -
One (1) ounce of purified water per two (2) pounds of body weight
Avoid hot baths
Lemon in 1st glass of water per day
1/3 cup Chlorophyll plus 1 egg yolk

Reasons behind Helpful:
Chemicals and preservatives can irritate body systems to greater or lesser degrees according to individuals.
Water helps flush the dietary mistakes we make from our systems. It is a pain to have the pelvic girdle take a hit from a sclerosis but less harmful than diabetes when it goes undiagnosed leading to possible kidney failure or amputations. Trust me, I've seen both.
Hot baths cause instant fatigue, sometimes making it difficult to dangerous to lift oneself out of the bath.
Lemon, though beneficial, can cause more frequent urination, limiting quality of life and keeping us MSers home bound.
Chlorophyll and a raw egg yolk feed the myelin sheath that takes such a beating with the disease.

Additional notes: Any cleanses that you do should be short. Short is a relative term. for me it means less than ten days with the exception of my brand of a Colon Cleanse (see post).
Athough wheat,barley, spelt and rye are no-no's, my personal exception can be found under recipes - Ezekiel Bread - The reason is this. When tested in the lab, this bread burns as a protein. (over 80% protein). The body seems unable to recognize this bread as a carbohydrate or able to break the grains apart into individual grains, rendering them safe for MSers.

Again: note the disclaimer on this blog.

MS - Vitamins and Herbs

There are a lot of theories out there. I include only the ones I have used or am considering.
Key: Ones I have used in italics.
Ones I continue to use in Bold.

Colon cleanse See post.
Vitamin C Only during cold and flu season
LBS II This herbal combination is a product of Natures Sunshine. I can get it for you if you pay for Tax and shipping. This combination has often and lovingly referred to as "Poop Pills" Trust me on this one.
Vitamin B-complex I didn't see a difference but am concidering using it again.
Pycnogenol This can be purchased may places and in many forms.
Lecithin I swear by this one and probably ought to devote a whole post to it. This is nerve food and helps heal in the brain!!!!
Herbal CA Again this is a Natures Sunshine product. Basically it is an herbal form of calcium.
Chlorophyll (1/3 cup every day) Must be refrigerated so I tend to forget it when I have it.
Eight ATC Another Natures sunshine product. I now use Nerve Control instead.
Talk to me in person or via email if you are interested in more details of these above mentioned vitamins and herbs.

Keep in mind that MS is different for every one. What works for one is not necessarily good for another. I encourage you to consult your Maker, in whatever form you worship for guidance. For me, Heavenly Father created my body, He and my body know what it needs. It is my mission to figure out what they are telling me.

As to the theories of cures out there . . .

I have joked about going out into the desert during a lightening storm with a lightening rod in one hand and a live scorpion in the other. Sure one of them will cure me or kill me. Either way I'm out of my misery!

Notice I say I've joked about it.

The one theory that I am sceptically considering is Bee Pollen. I'm open to input on that one, preferably from someone who has tried it.

Dealing with MS - Start with a Colon Cleanse -

There are a bunch out there but this is the cheapest and most effective for me. I keep some of this on hand all the time just in case the drugs slow and stop the evacuation process.
The first time I used this for a whole month. This is what I suggest to anyone needing to get the old poop factory moving.
Take this first thing every morning before a glass of water and especially before eating.
The night before - Four (4) prunes or dried plums
2 Tablespoons Golden Flax seed
Cover with purified water.
The consistency of this concoction may take a bit of getting used to, but it costs a whole lot less than the colon cleanse that you buy at the health food stores!

Managing MS pain

Libby, in answer to your question. Yes, at times the pain is unbearable. Although Doc is more than happy to prescribe a variety of drugs, I prefer to use good old Ibuprofen. I noticed that one of the first painkillers the doctor prescribed years ago was simply a double dose of what my 200 mg over the counter Ibuprofen recommended.
Why pay the prescription price? I asked myself.
Why live with the hallucinations that come with 'Vicadin' or a few others?
This last round of pain reminded me just what a bad case of the flu felt like. Ever one to try and figure out what my body is trying to tell me, I sat quietly and listened to it and the Spirit when the house was quiet.
Potassium--- my daughter's coach insists that she eat a banana every day to keep her muscles from cramping. I ate a banana and went to bed--- without painkillers. I slept well (relatively) and woke without the pain--- only a ghost of it to remind me that I had chosen wisely.
Hope that helps.