Phoenix Rising

Like the fabled bird rising from the ashes, I am once again at the keyboard. Looking at my most recent post (a year and a half ago!), I realize that to identify as a blogger would be a misnomer. I think bloggers are supposed to post in a more timely manner.

What have I been doing for eighteen months? Obviously nothing worth posting. In fact, for a year of that, I’ve buried myself in reading. I’ve devoured more books than I would care to admit to. The relentless sameness of everyday living with MS provides a fertile ground for literary escapism.

For the last six months, I’ve been providing moral support to Husband who is receiving treatments for lung cancer. He’s doing great now but will still need bi-monthly immunotherapy infusions for at least a year and probably longer. Besides being grateful that the radiation and chemo seems to have done their jobs, I’ve learned that two people with health issues living in the same house is really…let me find a less vulgar expression…”very challenging.”

But with his slow return to normalcy, and his improving energy level, I find myself mentally improving right along with him.  I wish I could report that the MS is improving, too, but I can’t. After twenty years in, we try to co-exist peacefully but its debilitating effect still occasionally gets the better of me.

I never knew such words could wrathfully come out of my mouth when I am forced to ask for help after failing at an easy task. It pains me to admit I rely on hubby about 90% of the time. So for him to be down physically leaves me very vulnerable indeed.

But we carry on, each with our own burdens. I think there is supposed to be something noble in all of this, but I’ll be doggoned if I can figure out what it is. So, like the Phoenix, I will soar above it all and once again try to find interesting things to write about dealing with MS.

It’s either that or this ol’ bird will finally get her wings clipped.

 

In-VA-lid Invalid

The long winter days are messing with my psyche. I am starting to dwell on my chronic-illness situation. Of course, my MS psyche is no different than anyone else’s psyche that continually deals with sub-par health on a daily basis i.e. those folks with arthritis, diabetes, asthma, etc. The daily management of all can wear down the sufferer.

Gray, rainy skies don’t help swinging your mood into the happy zone. But…today the sun is out and I don’t feel so low. In fact, it’s lifted me up so much that it gave me a boost to post my thoughts on how hard it is to be a depressed invalid. Wait. That doesn’t sound right.

What I mean to convey is that the long winter prevents me from going out of doors any time I want. Snow, ice and other slushy stuff makes my wheelchair ramp into a slalom ski jump. Since I have no desire to join any Olympic team, I wait for better weather – that is, weather that doesn’t have the words “wind” or “chill” in it.

My psyche can devolve into thinking that I have no purpose or validation, you know, an inVAlid invalid. At times like these, one prays for spring to hurry up. My only other recourse is to wheel on down to warmer climes where getting out of the house and doing things can be a daily option.

But for now, I guess I’m forced to engage in emailing my opinions to all and sundry when I read about things that are just not right. For instance, I got passionately upset about the Duluth, Minnesota, School District, removing To Kill a Mockingbird and Huckleberry Finn from their required reading lists because both books used the n-word.

Do you know I actually got a return e-mail? The district’s representative thanked me for writing. She explained the books would still be available for those who wanted to read them, but those books were being replaced on the lists by other anti-racism books that were less controversial.

I was somewhat mollified, but as someone who named her firstborn after the lead character in To Kill A..M.. – Jean Louise (Finch) aka “Scout” – I felt I had to uphold the reading of my favorite book. I don’t think my daughter, Jeanie, has inherited my zeal for Harper Lee’s classic, but she should be happy I didn’t name her “Mockingbird.”

But I digress..The point of my essay is to dispel the notion that I do not have any validity. I will continue to go forth and spread my unsolicited email opinions far and wide in the hopes of shining light on an opposing viewpoint.  Or…I could just wait for spring to arrive.    Nah.

 

Jan Errs Again-Case #38

Just when you think you’re ready for the holiday season, a cold comes along and stops you from having any more fun. I’m not sure where I picked up the germs, but I did. This is most annoying because I have no one I can point at with my finger-wrapped-in-tissue.

Combine that irritation with having MS and you at once become an unhappy camper (as if camping would even have been a happy possibility nowadays).

I started taking Tylenol but moved on to Coricidin for a day. Its drying-the-runny-nose ingredient must have dried out my whole body. I thought I had taken in enough fluids but my legs turned to jelly and I couldn’t stand up for beans. This is very problematic because, even though I am in a wheelchair, I still have some strength in my legs. Take away that “some” and you’ve got a crazy person on your hands.

I stopped taking the medicine and hour-by-hour I felt my strength return. It never occurred to me to check with my doctor before taking the OTC med, but having MS can be tricky, and I should have had more sense. To call the doc now that I’m feeling better would invite sharp words to fall from his lips down onto my head.

So, to make up for being a dumb-ass, I will share knowledge painfully gained and help others avoid a mistake. I strongly recommend you check with a medical professional before trying to cure yourself of even a simple cold. I’ve learned that the MS demon is just waiting for another chance to further complicate your life.

And because I always plow forward without heed to consequences, my return date with that particular demon will probably be Case #39.

 

 

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.

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?