Stumbling Explanations

Recently, I had the delightful experience of having my six year old grandson read to me. He did amazingly well (I know, I’m biased). Archer is a thoughtful, perceptive and affectionate child. His parents would add “stubborn” to the descriptor list, but he’s not that way with me.

While reading , he abruptly stopped  the adventures of “Bob” and asked me why I couldn’t walk. Thrown this curveball, I gracefully tried to answer him but unfortunately pitched my words all over the place and devolved into babbling.

Finally getting a grip on the situation, I quickly reviewed in my mind what appropriate words to use to explain multiple sclerosis. Calling it a disease might scare the kid so badly I might never find out any more about Bob. Too few words or shrugging off the question would insult his intelligence.

I regrouped and casually mentioned that I had a  problem with my spine and that made my legs too weak for me to be able to stand. He understood and immediately pointed to his neck and told me that this is where the spine started, right?  I agreed and that was that. He then asked if he could have an M & M cookie ice cream sandwich. I was so relieved to have dodged that particular bullet that I would have given him two.

All this gives me an appreciation for politicians who get caught, teleprompter unplugged, and are forced to deal with unpleasant questions. I must learn to do a better two-step with my answers like them.

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Carrying On

It’s been awhile since my posting about my following a naturopathic route. Here’s what I found out:

MS is a stubborn enemy. It keeps following me around, and so far no matter what I do, I can’t shake it. But my naturopathic supplements and following a low-sugar diet has mostly kept me stable. Unless I do crazy things like staying outdoors in the summer heat for hours and thereby turning my legs to jelly – which I did this past weekend. Coming inside and to my senses,  I quickly drank a glass of cold green tea, turned my soul to the air conditioner, and was revived.

When I visit my alternative medicine doctor every three months or so, I report that so far my MS is no worse. He’s pleased when I say that, but then I have to add that I’m not healed yet. He gives me one of those doctor looks as if to say “Well, you’re being unrealistic” but I say it anyway. It’s been about nine months on the plan and I expect  results!

What’s so wrong with being optimistic? I’m going for the gold here. Did you ever hear of an Olympian say “It would be nice to earn the gold medal but I’ll just work to get the silver or bronze.” I didn’t think so. So my intent is to be cured.

To that end, besides taking the supplements , my mostly strict adherence to eating less sugar has been a good plan for me. I’ve lost a bit of weight which is a good thing. My weak left arm is still weak but no weaker. My legs are still strong enough to stand and they’re no weaker than before- unless I overheat.

So, all in all, I’ll stick to the diet and supplements until a cheap, fool-proof, 100% guaranteed for life, snake-oil salesman-approved, chocolate chip flavored remedy is available. Then I’ll try that.

Can’t you just see the horrified expression on any medical practitioner’s face?

 

Finally Getting in Vogue

I just finished reading a book about minimalism. It seems this is a very fashionable idea going around with those gurus of popular trends. Since I have never been in the vanguard of any cultural movement in my entire life, I was surprised to find myself knee-deep in this one.

Minimalism is all about having a Do Less attitude towards living. This way would allow room in our lives for the willpower to do big and small things. The book made sense because of our hyper-distracted lives. Focusing on the simple life supposedly will give us more time, joy and less anxiety.

Well, I can say for sure that MS has simplified my life profoundly. I hadn’t realized that being limited now to what I can do physically would lead me to having more free time to indulge in my favorite pastime of reading. Who knew I would also be at the forefront of winnowing down my shoe collection because I don’t need platforms or stilettos anymore? I’ve become a minimalist without even knowing I was cool and in vogue now.

I’m still working on the increased joy I’m supposed to be feeling, but I’m sure it won’t be long now. I don’t have to worry about keeping up with the Joneses because it’s a moot point. My days of wandering through a mall just looking for things to buy is irrelevant so in fact I’m spending less money. The book talks about paring down your wardrobe and only having a few well-made outfits that can be mixed and matched with accessories. Since I live in sweats, I don’t need many jewels or accessories to clog up my closets or drawers. Aren’t I just the hippest person you know?

I guess minimalism should be considered a good idea. Who needs piles of stuff around to have to sort through and clean? It can be healthy to put down our cell phones or not connect so frequently to our social media accounts. We don’t need to be tuned in 24/7. Nor do we need a kitchen full of never-used appliances.

Finally, who needs piles of books stacked high enough on the table to block the view of the person seated next to me? Call me un-cool then, because I do. Sigh. I knew I couldn’t float  that shiny new boat for long.

 

Supplemental Update

After three months of following a naturopathic-approved plan for better health and weight loss, I would like to report amazing, fantastic, unbelievable results. I would like to report that, but it would be a total exaggeration. Well, not totally; I did lose a few pounds.

What is rating zero on the Achievement Scale is –  I still have  MS. Call me crazy, but all the self-help books agree that I should not settle for less than my ultimate goal which in my case is the total eradication of this disease from my life. Using this statement as a benchmark, I can report that my plan so far isn’t working.

Now, to be fair, the ailment may have taken a bit to gain control of my life so three months may seem too soon for judgment. After all, it takes months for a woman to gestate a baby, eighteen months or so to over-saturate us with a presidential election, and four years to fight a Civil War. But as I am personally a snap-judger, I was a bit disheartened at not having a positive result in this area.

However, at least I am not any worse off and that could be saying quite a lot since MS is something that historically does not improve with age. I think I am a bit stronger and am crediting the weight loss and maybe the supplements for that. These and better eating habits.  It may also be a placebo effect and if it is, so be it. Could thinking you will get better actually make it so? There are too many stories verifying miraculous cures to discount the thing out of hand.

Reviewing my self-created plan of reversing my health, I have gone the pharmaceutical route (recommended for the relapsing-remitting stage), and the alternative route on whose path I am currently on (I’m in the secondary phase of MS-there is currently no FDA-approved treatment for this stage). Alternative therapy is a wide open field with many things to choose from. Unfortunately, very few clinical trials are in place for, say, acupuncture, horseback riding therapy, snake  venom, or supplements. Personally, I skipped those first three ideas, and settled on the supplements. My clinical trial-of-one is still ongoing.

Still, the idea of remaining in place, so to speak, does not appeal to me. I need a major life plan to keep propelling me forward to good health. I’ll give these pricey supplements a few more months to manifest the results I’m looking for. After that, I may give snake venom a try. It would be sssssuch a sssshockingly ssssscary ssssstory to tell.

(P.S. Don’t worry. I’d have to lose my mind completely to try that one.)

New Year, Old Me…Maybe

Here we are – 2017 – almost halfway through January. Show of hands, please, as to who has already broken one or more of their resolutions to do better. Didn’t make any? Neither did I. It’s just too darn depressing to realize – once again – that my good intentions fall away as soon as I have a Starbuck’s Frappucino in my sight, or a Bradley & Wall pizza slice on my plate.

However, all may not be lost. I was reading in Momentum Magazine (a publication put out by the MS Society) about things we can do to build up our resilience.  They gave a list of things to focus on : getting enough sleep, exercise, social support, and meditation to name a few. One other thing mentioned really surprised me, though, as I had never thought of it before nor realized how beneficial it could be: forgiveness.

For-give-ness. Amazing, right? One of the best things we can do for ourselves is to actually forgive MS – its existence in our lives, the havoc it has caused, the things it has taken away from us…all of it. I’ll admit, I’ve been hostile about the whole thing since my diagnosis 14 years ago. That’s a long time to carry a grudge.

So, I made a concerted effort to forgive it. I made a mental list of all the things I was sore about, checking off each insult to my body and letting it go – my forced retirement, my inability to walk anymore, my one-fingered typing (my past personal best was 80 WPM so you can imagine how it rankles losing that speed!) I let it all go, and incredibly I did feel better. Lighter and freer somehow. I no longer have that “woe is me” attitude.

I’m in a good place now: hopeful and, yes, more resilient. Instead of dwelling so much on what has negatively changed in my life, I can stop looking inward and see life happening all around me and engage in it.

One further note on how noble I was letting go of my resentments, I kicked them out of my life without once uttering any swear words on their way out.

I wonder how long that nobility will last?

Self Advocation

I finally did something I’ve wanted to do for some time: I went to see a naturopath. Because the visit was not covered by my insurance, this move required that I be serious about following any recommendations he (in this case) might offer.

I must confess to being a little fearful that I was wasting my time and cash. After all, my neurologist never once suggested that I look into alternative medicines to deal with MS. Of course I realize most doctors are not skilled in the naturopathic field so they would be reluctant to suggest it. But being an advocate for my own self, and in the succinct and pithy  words of our new president-elect, “What the hell do you have to lose?” I boldly went forth and made the appointment.

I was charmed at once by the office as soon as I rolled in. The receptionist was the doctor’s wife, and their two small children were happily scampering around the waiting room floor, behind her desk and under her feet. When ushered into the consultation office, I noticed the entry door was festooned with Crayola artwork. Their kids’ art was inside the room too. No pricey avant-guard watercolors were anywhere to be seen.

His recommendation to me was straightforward: I have to keep my immune system in balance. The problem with MS is that our immune systems are in hyperdrive. They are abnormally responding to wrongly perceived threats against them and thus they damage the central nervous systems by mistake. It’s you fighting you, but without any just cause. (Jan’s definition of an autoimmune disease-absolutely right in my case: I’ve always been my own worse enemy!)

So. He recommended a low-glycemic diet to help manage symptoms and to lose a little weight (no sugar, low salt, no dairy, no junk foods-you know, all the good stuff that keeps our souls together), eating within an hour upon awakening in the morning, and thereafter eating small meals three hours apart. He also recommended four supplements for me to take twice a day. I won’t mention them by name here bcause they cannot be obtained over the counter.

Anyway, after two months, I’ve lost eight pounds. I cannot say I’m a new woman, MS-wise, though. When I gently complained that I wasn’t cured yet (a recurrent fantasy any time I try an alternative medicine therapy), he gently countered that any improvement I may experience may take a while. After all, it took me years to get to this point.

He’s right, of course, but along with being my own worst enemy, I also have the patience of a gnat. I should have asked him if there was a supplement I could take for that.

The Big E Adventure

If you are fortunate to live in the northeast corner of the U.S. of A. you will appreciate the advent of our third season. Autumn in New England is a most spectacularly visual place. The trees are changing color from green leaves to gold, orange and red. Living here, we try not to think about the oncoming fourth season and its bleak and gray landscape.

Our Eastern States Exhibition (the Big E) is going on right now in Springfield, Massachusetts. It’s the first time in a while that I’ve wanted to attend. There was always a reason before: it was too hot, too cold,  there were too many people, only bad things to eat. Once my Nervous Nellie syndrome was overcome and a power wheelchair was obtained, 90% of my objections fell away.

The power chair made it easy to navigate a very handicap-friendly walkway. Side note: As you wander around all the kiosks selling crafts, etc., the chair could be turned into a modern-day pack mule. We had to be careful not to load up too much stuff on the back of it so that I wouldn’t upend and find myself looking up at the sky!

The fair food was dangerous ground, however. I tried to justify eating deep-fried pickle wedges by thinking pickles were cucumbers, right? and cucumbers are good for you. I reasoned a hot dog in a bun was a much better choice than that corn dog on a stick over there. I ended the visit with an ice-cold mocha latte and a cinnamon bun. Sigh. There was no use justifying that.

All in all, we had a wonderful afternoon enjoying the sunshine. When I felt myself overheating, I powered off to the main exhibition building where it was air conditioned. There we bought a totally frivolous water fountain for our cats who normally love to stick their heads under a running bathroom faucet which is extremely annoying when you’re tying to brush your teeth. Anyway, when we got home, we assembled the thing, added water and watched our cats completely ignore it.

Aren’t fairs great?

 

 

Travelin’ Jan

Trying to reconcile traveling and dealing with MS has proven to be a challenge. It definitely isn’t easy even to just think about making any plans. In fact, the summer season is here and the best I can do is order two travel videos, one about France and the other about Germany. (no airport lines, no traveler’s diarrhea, no angry refugees)

The longer I have had MS (sixteen years now) the better I have become at talking myself out of doing anything fun. Even summer music programs at the beach are missed (last week in my town featured the U.S. Coast Guard Band) because of anticipated logistical problems: would handicap parking be available, could I move through sand/grass in a wheelchair? It’s easier to just stay home.

I admire, but don’t emulate,  people with disabilities who are always on the go. Obviously they have inner resolve. Unfortunately for me, mine was left on the conveyor belt when my body/mind parts were being assembled. Kudos to those courageous people.

I don’t like going into the stores to shop anymore. (parking, aisle width, shelves too high)But I have become quite good at online shopping. Now you may think that is psychotic. Why bother having nice clothes and jewelry if you’re not out visiting with the peeps? Don’t know. My rationality chip was left on that same conveyor.

Can an old dog be taught to learn new tricks? I hope so because if I get anymore housebound my traveling will be limited to visiting/hiding in my hall coat closet. That may not be such a bad thing, though: I can order a new winter jacket while I’m in there. (always hoping I will actually go outside when the time comes)

Tipping the Scales

Glorioski and hallelujah! After almost a year battling stubborn-to-heal leg sores, I was officially discharged from my wound doctor’s specialized care. All healed and see ya later. I was relieved and most grateful. That is, until I had a nasty shock.

The Wound Center was switching over to a new computer system during my last days there. It caused some chaos and many headaches for the staff. But all patients’ records are now fully done and can be accessed by doctors/patients at any time. I think this is great because I’ve always had the suspicion of not being fully told the whole story of my ailments. Call me a conspiracy theorist but my mind goes where it wants to go.

Anyhow, all my vitals were duly entered except my weight. When asked about it I truthfully said that I hadn’t been upright on a scale for probably four years. I could have lied and said I was 114# but I thought they might get suspicious with that number. The nurse said not to worry. They could get the weight after I reclined on the hospital bed where they routinely took care of my legs. I guess the bed had a gizmo that subtracted the weight of the bed and the number remaining was all you.

Herein lies my shock. I can’t believe the pounds I packed on in the four years since I’ve been wheelchair-bound!  I am not talking about a few here. Needless to say, my joy at being released from their care was tempered with the knowledge that I am now classified as a porker.

I came home from the center with a fire in my soul. I would lose lots of weight if only I would just give up all that has previously given me happiness: cookies, cake, peanut M & Ms. Unfortunately, I calculated that if I lost one pound per week – the recommended safe way to do it – it would take me years,  and I’d be so old and wrinkly and forgetful I wouldn’t remember why I started dieting in the first place!

Still, all that aside, rational thought has prevailed, and I am religiously adhering to my new snack-less diet. And speaking of religion, I remember a plump holy person once saying: “If our bodies are temples, then I am working on a basilica.” I think as long as I’m not working towards the Vatican, I’ll be OK.

Lieutenant Dan and Me

Well. It’s finally happened. I’ve regressed mentally into a toddler. Of the many faces of MS, this has to be one of the more unattractive. All I’m missing is stomping my feet. Let me explain.

All I wanted this morning was a hot cup of instant coffee. (I know, I know. The purist in some of you will recoil at that but I happen to like its taste better than I do the perked variety.) I couldn’t manage to stand up from my wheelchair to reach the microwave. I struggled and struggled until I finally had to call for help. I responded to my husband’s statement: “Why didn’t you ask me to do it for you?” with a petulant: “Because I wanted to do it myself!”

Now I can understand my three year-old grandson using this reasoning. He’s just mastering the art of self-reliance. Coming from the mouth of a mature adult, it sounded foolish. But it’s irksome that some routines are now problematic.

Tying shoelaces is no more, playing Battleship with its teeny-tiny pegs is a memory, vacuuming, dusting, washing floors, toilet cleaning are history…hey, wait a minute. Those last jobs aren’t so bad to give up.

Putting on jewelry (necklaces, bracelets) is now a challenge. My brother-in-law has suggested a new career for himself in his retirement years: He’s going to the old folks’ home and help the ladies adorn themselves. I, personally, have discovered magnetic-clasp add-on’s to my “jewels.” They’re a brilliant idea.

I’ve recorded from TV, and have watched several times, the Fox channel’s interview with Charles Krauthammer, the Pulitzer-prize winning syndicated political columnist. He is also confined to a wheelchair following a diving accident at age 22. (He is now in his mid-60s.) Krauthammer is my hero, along with my friend, Joe Genera, (whom I actually know) because of their full lives despite having been handicapped at an early age (Joe, also at 22, due to being under a faulty auto lift when it fell-he’s now in his 50s).

It is inconceivable to me that either one of these fellows would crab about their fate. Although, come to think of it. Lt. Dan’s (of Forrest Gump fame) rage against God during the shrimp boat-in-the-hurricane scene was pretty impressive. It’s too bad, though, that I can relate more with Lt. Dan and not to the calm dignity of Charles and Joe. Maybe I will…in another 20 or 30 years.

 

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