Absolutes, hope and MS

“This house is not for you. You should be in assisted-living. You will never again be able to climb the stairs, or even get into the kitchen, past all this clutter.”
 
I’m sure she’s right. But once I heard the word never I stopped listening.
 
Because in my mind, this is my only life. And I believe that really anything could happen tomorrow. No one knows the future. She can’t know the future. 
 
I could live another fifty years! And I do not want to live another fifty years in assisted-living. I wouldn’t want to pay for that anyway. I’d like to use that money to travel, maybe. Or make accessibility improvements to my current home. Or buy a lakehouse as a second home.
 
Never or always
 
In our house we say, “In case of emergency, break glass.” It’s important to us to have some sort of “safety net.” That is kinda how we plan. Just know what you’re going to do next if it all goes to hell. What is your next, first step?
 
Then don’t spend your precious life, the only one you have, obsessing over it. If you believe in a God or some sort of benevolent hand, it will all work out. If you don’t, you can just say “S@#t happens.” You’ll wake up tomorrow either way. You can start dealing with it then.
 
It happens to me frequently (although some may say I’m just framing these incidents in my life as “emergencies.”)
 
Just one example
 
As an example: the wheelchair.
 
Years ago I asked for a prescription for one from my neurologist. Next I went to a “wheelchair store” and saw that everything was like $3000 and up. And when I contacted my health insurance provider about it, they basically told me to come back after I’d met my $2500 deductible first. 
 
Since I was still walking, albeit with a cane, and there were other health issues going on in our house at the time, I didn’t think it met any level of urgent yet.
 
Some time later, we found a used one for free on Craigslist. As that seat wore out and the wheels began to deteriorate, we found a $300 one at the local Walgreen’s (although pricier than free, it was no $3000!). 
 
This year my most recent one did come from my health insurance.  It is very basic, but they bought it for $1260 and I only paid a copay of $4.13.
 
Time passes, s@#t happens, we live our lives the best, and happiest, way we can.
 
What I’ve learned this week

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Chronic illness & bullying

bul·ly  |  ˈbo͝olē  |  noun.
a person who uses strength or power to harm or intimidate those who are weaker
 
My first run-in
 
In sixth grade, I started at a new school with some, but not all, of my classmates. As part of a program for faster learners, I was moved to the junior high school to merge with other smart kids from a handful of different local elementary schools.
 
My best friend from the neighborhood — I’ll call her Deirdre — was a year ahead of me in school. So this was a new school for her, too. And she was a little surprised and irritated that I was there with her, a year before I was supposed to be there.
 
I was a smarty-pants. She now hated me. And with several of her new friends, she began showing up at recess calling me names, taunting me, and hinting at violence to come.
 
Present day
 
Bullying can happen in any relationship. Add chronic illness to the equation and the level of frustration can be overwhelming. This abuse aims to render physical or psychological harm to another.
 
Although we usually think of domestic violence when we think of abuse, there are other, less obvious forms. Abuse can be verbal, where “cruel, demeaning language is aimed at another person.”
 
It can be neglect, “when a person is deprived of essential care…or opportunities to engage with the outside world.” Or even just handling a person roughly or aggressively while assisting them.
 
Whatever the form, bullying and abuse are not acceptable, and should not be tolerated.
 
Dependence
 
An article by the Mayo Clinic points out that “Bullying was once considered a childhood rite of passage.” But today we realize that it can have like a lifelong effects in someone’s physical health, self-esteem, and emotional well-being.
 
Today, as an adult with chronic illness, I depend on friends and family to do for me. Most of the time I use a wheelchair to get around so I am constantly in situations of “perceived power imbalance.
 
But I also realize that I can be a bully, too. The MS Society cautions that our caregivers “can be abused by a person with MS who uses foul or demeaning language or lashes out with sharp fingernails or a cane or crutch.”
 
We need to remember that life with chronic, unpredictable disease can be challenging not only for us but also those who love and care for us. It helps to occasionally stop and put yourself in the other person’s shoes.
 
Conclusion of junior high bullies
 
In junior high, the daily abusive behavior was confusing and upsetting. The power imbalance was clear: three older kids with shrewd awareness against a younger, naive and seemingly impertinent one. 
 
Later that week I cried to my parents about it and together we came up with a plan.
 
I started calling out a hearty greeting to Deirdre by name whenever I first saw her group advancing. This had the effect of dissolving their angry demeanors into teen-girl giggles. Which I suspect embarrassed them.
 
Whatever the case, after several days of this, they lost interest in me and I never heard from them again.
 
What I learned this week
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My MS in September

I used to love buying new school supplies even after I graduated. Like paper for the printer and pens and notebooks for a new journal. And colorful folders and sharpies and glue and glitter. Ah school supplies! 
 
Anyway, enough of my reverie. Back to the post at hand. I usually have a set routine in the morning that goes kinda by the wayside during the summer, and especially now because I’m between jobs; I’ve kind of let it lapse.
 
But now it’s September and back to routine so I thought I would share my morning routine with you:
  1. I wake up in the morning, wiggle my toes and put my knees to my chest and rock side-to-side a little bit.
  2. I sit up and hang my legs over the side. I bend over, touch my toes, then back up a few times just to get the blood kind of going.
  3. I turn off the white noise machine next to my bed and turn on the light there which I leave on for the rest of the day
  4. From the drawer next to me I retrieve the pill container where I keep a weekly supply of pill doses (I take stuff twice a day). I swallow my Gilenya and a few other meds and supplements in the morning using the waterbottle that I keep on my nightstand and refill as needed.
  5. Then I scoot the wheelchair over to the side of the bed and maneuver myself into it 
If the bed is dry I will just pull the covers up and smooth the duvet cover over everything. This is how I make my bed now. Otherwise I will remove the “chux” (see below!) to handwash in the sink, then make up the bed.
 
I now sleep with chux which are (these https://www.parentgiving.com/shop/reusable-underpads-30/c/ ) reusable bed pads for when I leak during the night. 
 
This is the sexy reality of my life: I have a leaky bladder (this is what we are currently calling incontinence? Uh, OK…) It is the bane of my existence and the most embarrassing symptom I have right now.
 
I roll myself to the bathroom and do my morning ablutions. If I have items to handwash, I start a sink full of warm water and good smelling, no-rinse Soak then throw them in.
 
Finally I eat something green before even having coffee (i’m keeping a bowl of frozen peas mixed with nuts, dried cranberries, and a few chocolate chips, moistened with salad dressing and eat a few spoonfuls while the water is heating), then have oatmeal with walnuts before anything else.
 
I only have 1 cup of coffee (have I mentioned my leaky bladder?), then have tea, cocoa, bouillon, cider or just plain water the rest of the day. 
 
Eating something green first thing in the morning is the most recent habit I have added to my routine. It’s my concession to The Wahl’s Protocol. Next I want to add some regular daily meditating somewhere in there!
 
Things I’ve learned this week
  • Reusable bed pads are called chux.
  • It’s okay, may be preferable, to eat apple seeds, so core and all.
  • The Bletchley Circle (BBC TV series) only ran for two seasons from 2012-2014 but the concept was apparently tried in the US with The Bletchley Circle: San Francisco in 2018.
  • Waterpik Water Flosser replacement tips should be replaced every six months, and if you buy one at a garage sale you should replace the existing one immediately! (Also you can download a user manual at the company’s website.)
  • Most peppers are not overly spicy but the ones with the black seeds are hot! Use gloves when removing the seeds and don’t rub your eyes!

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Stress and my “clutter threshold”

“Accept the limitations of the space you have, and declutter enough that your stuff fits comfortably in that space.”
–Dana White, Decluttering At The Speed Of Life
 
I imagine most people have already figured this out by adulthood. And I wouldn’t consider myself slow. But as a kid, I never paid attention to how things stayed clean.
 
I adjust too easily to an imperfect situation: “…grabbing a coffee cup from the top rack of the dishwasher or a pair of socks from the pile on the couch doesn’t feel the least bit awkward, so the visible pile doesn’t register as a problem.”
 
Where did all this stuff come from
 
I figured out laundry in college as I needed clean clothes and bedding, for example. And I learned to keep the floor clean because, like Dana White points out, “if your floors are clean, everyone thinks your house is clean.
 
I pretty much always lived alone and kept my home clean enough for visitors. But when I got married suddenly we had two households of stuff in one house. And I never realized how to be disciplined about decluttering. Everything seemed useful!
 
Now that we both have mobility issues, it’s become obvious that we can’t move freely around this much stuff anymore. The aforementioned Dana White has written extensively about this. Luckily, she speaks to me.
 
Clutter threshold<
 
Dana talks about how we all have our own “clutter threshold,” the point at which all the stuff we own has become overwhelming. That if we live above it, our space is out of control and hard to keep clean, but if we can declutter down below it, our space at least stays manageable.
 
That’s where I’m aiming now. Decluttering is getting rid of things we don’t need. But the point of decluttering is to keep stuff. It isn’t to get rid of things we want to keep; it’s to identify those things and then to make space to enjoy those things.
 
Clutter is one of my triggers 
 
It’s also about the stress I feel living in an out-of-control environment.
 
A 2013 study showed that while both positive (like a wedding or the birth of a new child) and negative (like living over my clutter threshold) stress can impact the course of our MS, the negative stress can actually trigger disease activity.
 
 
So I’m working on changing my mind-set, my ultimate goal for my home. I aim to have less stress by having less stuff.
 
Other stuff
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Troublesome Tysabri

In 2004, a new MS drug was approved by the FDA. As opposed to an interferon, Tysabri (natalizumab) is “a monoclonal antibody”.  For more explanation, try this.
 
It blocks white blood cells from binding to molecules which want to drag them into the brain where they would cause inflammation.
 
As an aside, at this point, all the MS meds aim to reduce inflammation in the brain. This is a primary goal. Symptom management. Because we STILL don’t know what causes the disease. Ergo we still can’t say any of them “works” beyond their ability to reduce inflammation in some brains.
 
In healthy (read ‘non-treated’) people this process is desired. It happens when the body is fighting an infection. Without this process, those on it are more susceptible to infection. The body is without one of its tools.
 
Just a year after it was approved, my neuro switched me. 
 
My First Infusion
 
When I began Tysabri I was cautiously optimistic. It was a big deal: a new drug administered by monthly infusion as opposed to those icky (to me) daily shots. So I went for my first infusion on Thur., 2/24/2005.
 
At this point, I needed to walk with a cane, I was experiencing some rapid loss of energy daily (fatigue) and had a bout of double vision. But the infusion went fine, and I was hopeful I’d see improvement soon.
 
I had just moved in with my boyfriend. So the next morning we watched the news together in horror: scrolling across the bottom of the screen was a notice that Tysabri had been taken off the market because several subjects of its latest study had died!
 
The fallen test subjects had developed a severe brain infection, called Progressive Multifocal Leukoencephalopathy (PML). 
 
PML
 
It is described as “a viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).”
 
We now know that PML is caused by the JC virus, something we all already carry, but is usually kept in check by a healthy immune system, something we MSers don’t have. 
 
Other risk factors include duration of therapy and presence of the anti-JC virus antibodies. 
 
If they aren’t already triggered, these antibodies might appear after time on Tysabri, for example. This is what doctors are looking for every six months; it’s a “marker”–not that the individual definitively has PML, but that they are more likely to get it.
 
My Second Infusion
 
Eventually the drug was brought back to market, based on the reasoning that its benefits were greater than the risk. And in 2011, my neuro tried me on it again.
 
And again, the first infusion went fine. I had regressed to using a wheelchair to get around and I was tele-commuting full-time from home. Again I felt cautiously optimistic.
 
The next month I was sitting next to another MSer and she was saying how great she was doing on the drug. I nodded and smiled, hoping for the same.  
 
Suddenly she looked at me oddly and said “You’re starting to break out in hives. I can see it on your face! Aren’t you itchy?”
 
The nurse rushed over and discontinued the infusion right away. As she pumped me full of Benadryl and Solumedrol, she told me that I was now hypersensitive to Tysabri. That ruled it out for me ever again.
 
I admit I was disappointed. 
 
This is on the 2019 Safety Information: “Patients who receive TYSABRI for a short exposure (1 to 2 infusions) followed by an extended period without treatment are at higher risk of developing anti-natalizumab antibodies and/or hypersensitivity reactions on re-exposure”
 
Helpful tip: Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist whenever you get a new medicine.
 
Other stuff

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Lorna’s briefest history of the ADA

Curb Cut At Night (Luke Keller ©2019)
Curb Cut At Night (Luke Keller ©2019)
As an MSer, I feel like I’m kinda late to the party with regards to understanding how important the ADA is. I was diagnosed in 1991 but didn’t really experience physical disability until later in my life.
 
Why I care
 
The NMSS says “The ADA covers almost everyone with MS — not only people who use wheelchairs. It covers every person with an impairment that substantially limits one or more major life activities.”
 
How lucky am I to be living in this era? I take my electric wheelchair for coffee, I do all my banking online, I am able to work from home as a reasonable accommodation, and I write my blog with voice-to-text dictation.
 
mini-lift
Mini-Lift (Luke Keller ©2019)
In fact, in his book, Enabling Acts (see full site below), Lennard Davis says “Today we routinely see kneeling buses and buses with wheelchair lifts as a part of the urban landscape. It is an aspect of the success of the ADA that many of its accomplishments are now invisible to us since they are so much a part of our lives.” (Emphasis mine)
 
How it came about
 
For example, one city might mandate a reserved parking space close to the entrance of stores. But it wasn’t a federally mandated law, no comprehensive legislation. It was a catch-as-catch-can basically wherever needed.
Pool Lift (Luke Keller ©2019)
Pool Lift (Luke Keller ©2019)
 
Before the ADA, lawmakers were passing little laws here and there to correct disparate problems that suddenly (to them) popped up.
 
Then in the 1960s, civil rights for disenfranchised groups seemed to culminate in the Civil  Rights Act of 1964. And while in the immediate aftermath, the feeling among lawmakers was that trying for disability civil rights then was way over-reaching, the seed was planted.
 
Then in the 1960s, civil rights for disenfranchised groups seemed to culminate in the Civil  Rights Act of 1964. And while in the immediate aftermath, the feeling among lawmakers was that trying for disability civil rights then was way over-reaching, the seed was planted.
 
According to Davis, the initial idea behind the ADA was sparked by language slipped into what would become the Rehabilitation Act of 1972 for soldiers who were wounded in Vietnam. It said “No otherwise qualified handicapped individual in the United States, as defined in Section 7(6), shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” After many pushes, it was (reluctantly) signed by Nixon in 1973.
Bus driver lowering ramp (Luke Keller ©2019)
Bus driver lowering ramp (Luke Keller ©2019)
 
Next, after 20 years, and presumably once we had become used to the idea (sigh), the non-partisan National Council on Disability drafted the first version of the Americans with Disabilities Act. There was more political back and forth, but finally it was signed into law by Pres. George H.W. Bush in 1990. Then further amended and signed by Pres. (Bill) Clinton in 2009. Phew!
 
We made this
 
Some people are convinced that programs as monumental as the ADA will never again pass in our divided and hostile government. I hope that is not the case. As a collective, we Americans have shown the we can come up with all manner of clever solutions. 
 
Reading about the ADA made me realize how impactful it can be when the two parties of Congress work together to produce something for our common good. And it’s not perfect, but it makes space to let the creativity of society continue to reinvent how things could be made easier and more useful. 
 
Related stuff

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My wheelchair

OH has become the craigslist master, finding free stuff in the ads that he needs to finish construction on our house. Not just bay windows, but hardwood doors, a complete closet system, even lumber.

And one of the things he recently found for free is a wheelchair.  It doesn't have its footrests, but when the humanitarian who was offering 4 free, used wheelchairs learned that I have M.S., he told OH that he would reserve the best one for me.

Ever since we went to Bellingham and used the borrowed wheelchair, I have realized how useful a wheelchair is to accommodate us together.  While I do have my scooter, a wheelchair allows OH to stabilize himself while pushing me.

When I was diagnosed in 1991, I was told to go home and start preparing to be in a chair soon.  I even saved some ratty Chuck Taylor Converse hi-tops to wear while in the wheelchair so that people wouldn't see me and feel pity, that everyone would know I used to be able to walk.

But as time went by, I stopped waiting for the possibility.  And I believed what the doctor told me in 1991, that I could assume the severity and progression of my disease could be gauged by the initial five years after my diagnosis.  Obviously wrong.

Now the wheelchair is folded up in the living room corner, calling to me.  I'm always aware and worried when I am hobbling around that I will fall down.  It's tempting to know that I could be less stressed about it by sitting down.

The author Nancy Mairs who chronicles her M.S. in books like Waist-High in the World: A Life Among the Nondisabled recounts that she had a serious fall on her head then decided she would "give up walking" after she "had another such mishap."

However I don't want to "give in" to the deterioration prematurely.  And "sitting on your ass" is synonymous for being lazy. So how will I know when it's time?

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