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Thursday, March 23, 2017

#WeAreStrongerThanMS V is for MS Vocabulary

Image result for vocabulary imagesof MS

There are so many words, phrases, and descriptions associated with the symptoms of multiple sclerosis. Although I have an extensive education that concentrate on language and vocabulary, upon my diagnosis I learned of an entirely foreign word-world (say that out loud three times) out there. When my neuro talked to me about the myelin under attack, I thought he was referring to the pharmaceutical production company located right down the road fro his office. Geesh...

Yesterday I mentioned double-voiding. Common Sense (my side kick) immediately tells me what this means, but it is refreshing to have an official term assigned to this function I took upon myself a long time ago. 

So, really, I am feeling pretty confident with the vocabulary of MS.And then...a new one was thrown on me. 

Idiopathy  is a disease or condition that arises spontaneously or for which the cause is unknown. 

Ain't that just a lovely word? And the perfect description of multiple sclerosis? And, doesn't that leave you full of confidence in the hands of medical science? (Sorry. Didn't mean to break out into my idiot voice.)

I learned a long time ago, under the care of one of the best known neurologists in my geographic location, that multiple sclerosis is clearly a mystery to not only me, but my doctor. So, why didn't he just spill the beans and confess the nature of this disease sixteen years ago? Did he think that confessing that multiple sclerosis is an idiopathic condition would totally freak me out, or was it the realization of my  own credentials intimated him? This patient is not dumbo, and , guess what, I was all ready in a state of freak out.

So, when I learned this word, I felt a mixture of pride and disgust. Pride because  I had figured this element of MS a year into my diagnosis. Disgust because sixteen years later This confession has never passed the lips of any neurologist in my realm of medical acquaintances. 

Why? It is not the fault of any of these doctors I have met, so there is really no need to apologize. When addressing  MS with a general practitioner, though, the discussion is normally more detailed and the lack of medical evidence in the origin of multiple sclerosis is more readily addressed. Do you find this to be true or am I just paranoid?

Any way...there is so much knowledge out there...some of it useful, some of it, not so much... 

Being a word person, I am always intrigued when I run across a word of unusual origin or meaning. Did you know that a "palimpsest" is a piece of writing material or manuscript on which an original writing has been erased for reuse?  I know, I know, this is irrelevant and just another useless bit of information to clog up the brain.

Which brings me to another interesting term floating around in MS Land. 

Cog Fog.

You now it well. The inability to focus, comprehend, or fully remember or relate to a certain issue. More  often than not this is associated with the elderly; but we all know that age has no claim on disease. 

My little family of three has adopted an evening routine of, over the super table, answering the trivia questions in the trivia quiz in the daily newspaper. My husband enjoys assigning particular topics to our son and I. Yesterday he ruffled the newspaper and announced, "It's all on Mom today." Of course I know where this is going. I am usually pretty at identifying authors and musicians.

But, for some reason, as my husband posed the published questions, I frantically searched my unresponsive brain for answers. Even though the material was right up my alley, there was nothing but grey space where the answers should be. It was almost like having what is described as an out-of-body experience. My butt was firmly planted, but I wasn't really in the room. I could only stare blankly at my family. 

No, I had not tipped the bottle of red kept under the counter. I was not under the influence of any prescribed or illegal substances. I was just zoned out. 

I heard the words and knew the answers somewhere in the furthest regions of consciousness, but suddenly my rain hd returned to infancy and I was totally lost.

Weird. I was actually in a fog. A cog fog.


Terminology can be interesting, yet worrisome. I have learned to think carefully, yet try to think too hard about certain terms and phrases. A cautionary note here: If you think that bouts of said cog fog could be related to a mixture of meds, consult your doctor. There is such a thing as being overly medicated and there are all kinds of weird combination no-no's. (I mean, really, why can I not eat grapefruit in combination with some meds? I love grapefruit.)

Okay...enough of this. The sun is shining here on my street and there is no fog predicted. I hope to keep it that way.

Have a wonderful Thursday!
Love and Light,
Lisa


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Wednesday, March 22, 2017

U is for UTI's #WeAreStrongerThanMS MS Awareness Month

                                           U is for UTI's. 
symptoms of UTI

This is a big one for me. Luckily I do my best to stay hydrated and get my equivalent of eight glasses of water a day. Sounds good, right? 

The issue goes beyond being hydrated, though. All of that liquid has to go somewhere and it is a constant struggle to make sure that somewhere  is not on the floor. In public. With witnesses.

I am certain (well, relatively) that many of you can relate to the issue of "waste management". This is probably my favorite chapter in I Have MS. What's Your Super Power? Not because it reflects good times, but because it is such a constant concern in my daily life.


Chapter Two: Water Works                    

Incontinence.
A friend of mine used this word once in describing strange physical symptoms she was experiencing. Due to her habitual hypochondriac tendencies, as well as the fact that the word was alien to my vocabulary, I really didn’t think much of it at the time. I just nodded in requisite acknowledgment and let her continue to vent.

I have had to learn to deal with many humiliations prior to being diagnosed with MS, but this is the most alarming.

When the word popped up again during D-Day (Diagnosis Day), my mind raced to recall the first time I had ever heard it. I immediately cringed in sympathy for anyone who experienced such a degrading, animalistic situation.

And, then, I realized that I HAD experienced incontinence; but I had associated it with a probable urinary tract infection for which I was prone. Wow, two red flags all at once; but I didn’t know how closely these situations were related or what they had in common.

Incontinence is one of the biggest problems I have with my disease. It is not uncommon for me to not quite make it to the toilet on time or even know that I need to go in time to even think about searching for said toilet.

In the beginning, and even now, I am not comfortable in strange settings if I haven't located the ladies' room and have developed an acceptable escape route just in case. There are particular places that I refuse to visit because I know, without a doubt, that disaster lurks. When my favorite grocery store got a face lift and removed the public restrooms, I no longer shopped there. I only shop at stores that offer close proximity to a public restroom and I only try on clothes after several visits to the lady's.



Pre-diagnosis I can remember sitting in traffic and feeling my bladder totally empty onto the plush black upholstery of my snazzy l’il sports car.
It was a warm day. I had driven several miles aware of a need to relieve myself but confident I could and would make it to the next fast food rest room, located right up the road. That’s when the traffic lights failed me and progress toward those Golden Arches stopped. Thank goodness I was alone, with no witnesses. (That has not always been the case.)


I hated to soil my car seat but at least this hadn’t happened in someone else’s vehicle! (Eww...) I could clean this up with no one the wiser; even if the chore took precedence over my evening plans of driving to a friend’s house. (Double eww...I didn't relish the idea of plopping myself back down in my own pee.) And right now I needed to get home and clean myself up. Sitting in my own puddle was not a pleasant sensation.

Why had this happened? What was wrong with my body that I couldn’t “hold my water”?

Afterward I remember laughing at myself as if I had committed a secret blunder to lock away in my private memory vault.

But then it happened again…and again…and again…

Once at a deli…once in the hallway at school…no, twice…no, three times at school…once on my back porch as I fumbled for the house key…again in my kitchen after miscalculating the number of steps it would take to reach the bathroom…once in line at Walmart…a couple of times in bed…when I stood up at my desk…on the edge of a ski boat (but that was okay since I was already wet and in the river)...

You get the picture.

What horrid fuel for an already accelerated anxiety level. I never knew when it would happen and I began avoiding consumption of liquids to the point of near hydration. The muscles that controlled that physical act of waiting no longer obeyed my command. I envisioned a bladder bag attached to my side or packages of adult diapers stacked in my linen closet. (Actually, I just figured it was another one of those irritating bladder infections and substituted the Depends for cases of -yuck- cranberry juice.)

My gynecologist suggested practicing Kegle exercises daily. My mother told me to wear Depends (That figures!). My urologist prescribed an assortment of medicines and with each failed prescription changed it to another. My neurologist just told me I would have to live with it. This was all after D-Day, so you can only imagine the assistance I received without a definitive medical condition.

I admit that I really didn’t do much (any) research on my situation after diagnosis. It was what it was.

Boy, oh, boy, have I learned to lean on myself since then. If I want to know, I need to Google it! Since my diagnosis, my life has taken a new direction. I still teach full-time; I am a mother and a wife; I enjoy my hobbies of reading, writing, and crocheting; I attend church and play in the bell choir; but I do not go out of my way to look for additional responsibilities. I enjoy my home, my books, and my teaching. And I head for the lavatory at the first sensation, no matter how small.

I'm sure there is a pill out there with my name on it that would alleviate this problem, but I am also certain that pill would only lead to another problem that required prescription treatment; so, I will pass and once again take matters into my own hands. I do that a lot.

In fact, I have found that living with multiple sclerosis requires a lot of self-experimentation. The MonSter treats its members differently. What works for one MSer may not be the answer for another. I wish that I had kept a journal to detail my journey from day one, but hindsight doesn’t do me any good right now. So, to throw around yet another overly used cliché, there is no time like the present.

Things I have learned about living with MS:
*Stay out of the heat.
*Always know the fastest and most direct path to a bathroom.
*Have a walking device (my poison is a cane) close, even when you are feeling your strongest.
*Always know the fastest and most direct path to a bathroom.
*Stay hydrated.
*Always know the fastest and most direct path to a bathroom.
*Exercise daily.
*Engage in a hobby, or two, or three.
*Do not apologize for your disability. Remember: it only disables you if you allow it.
*Find an outreach group, either on line or face-to-face.
*Wear comfortable shoes.
*Always know the fastest and most direct path to a bathroom.





Want to read more? Order direct from me and I will pay the postage. LisaAnnetteMcCombs@yahoo.com




 It's just weird, this whole pee trigger thing. Everything I read encourages us to drink plenty of fluids even though gut instinct tells us that the less we drink, the less likely an accident will occur. Though the logic in this theory stands true, cutting back on fluid intake can cause the urine to become more concentrated. This increases the chances of infection since it is essential to flush the bacteria, waste, and mineral deposits that accumulate in the body. 

How do we do that?

We drink. 

Water is the best thing you can consume, but it is not the only acceptable fluid. Studies are firm on curtailing the consumption of caffeine, alcohol, and aspartame due to the increased bladder irritation they cause. 

Keeping your urine as acidic as possible is the best route to take in keeping your bladder happy. This means we need to pay strict attention to our consumption of dairy products, citrus fruits/juices, and anything containing sodium carbonate or sodium bicarbonate. Surprisingly, this means we should decrease our intake of (believe it or not) potatoes.

Image result for cranberries images

Cranberries and cranberry juice works well to fight urinary tract irritations.

We are encouraged to empty the bladder completely when visiting the loo. If this means double-voiding then bit is in your best interest to do so. This is the simple process of standing up when you think you are finished with your business. This redistributes any remaining fluid and re-stimulates the urination process.

Insufficient fluid consumption does not only affect the bladder. When we limit drinking, the bowels are also neglected. 

"Limited fluid intake: When  you stop drinking fluids in an effort to manage your bladder problems, you deprive your body of the fluids it needs to function properly. To make up for this, your body absorbs more fluid from the stool as it passes through your system."

Multiple Sclerosis For Dummies, 2nd Edition (1118175875) cover image

Now we have an even bigger problem. Constipation. Hard stools. Tummy ache. Ugh!

I don't even want to imagine the image of a constipated UTI. Doesn't sound pretty.

But, we've been there. Right? 

So, today I plan to cut back on my coffee (only one cup so far this morning) and concentrate on drinking water. Since I don't care for soda pop and I am not much of a "drinker" (I leave that to the professionals), this shouldn't be much of a challenge. Water is usually inexpensive and easily accessible.



Cheers!                           Image result for champagne glass images
Lisa






Tuesday, March 21, 2017

T is for Time for Yourself #WeAreStrongerThanMS

T is for time for yourself. WITHOUT FEELING GUILTY. This one is tough. My husband tells me all the time that I need to take "Lisa time". typical of the clueless, right? Does that time come before or after assuring dinner is prepared, clothes are washed, dishes are put away, groceries are purchased, bills are paid, appointments are made, son's school work is checked, hogs are fed and cows are milked? Okay, maybe that's a bit excessive, but you get the point. He is right, though. We all need time just for us. 

Since retiring from a wonderful thirty-three years in public education, I often find myself at a loss of what to do with all my free time. Well, if you know any school teachers, you can attest to their drive and need for a purpose and a plan. I always feel that if I am not doing something, my time is wasted. Guess what? Sometimes I have to actively search for that promised free time. It is my own fault, though. I am just not happy lounging around while the dust bunnies party. 

So, I write books. I read books. I bowl with my mother. I share knitting woes with my bestie. I go to church. I host a monthly MS meeting. I interact as much as he allows with my teenager. I don't have time for anything frivolous.

SCREECH

Hey, that IS all Lisa Time.

And I love every minute of it.

And I do NOT feel guilty.

Have a guilt free day,
Lisa

Monday, March 20, 2017

S is for Shoes #WeAreStrongerThanMS


                                   





High heels shoe made of diamonds.

S is for shoes. Ahhh. Every woman's nemesis. Why are we so obsessed with shoes? I could go on a complete rhetoric of my own history with shoes, but I would probably be preaching to the choir. (See chapter 7 of my book, I Have MS. What's Your Super Power?) My affection for footwear has not lessened since diagnosis, but it has taken a turn. Where I once filled my closet with ridiculous trends and fashions, I now only have shoes of comfort and close fitting support. No more flip flops, high heels, or heavy boots. My foot drop and balance issues dictate shoe choice.

It is really weird. What adequately works one day may be a totally different story the next. With my foot drop, my foot wear needs to be a firm fit. There can be no additional flopping around or extra length in the toe. Lace ups work best, but are not always sensible, especially on those days when my fingers decide to go on sabbatical.  On those days I find myself tying and retying laces to find  the appropriate tension.


Image result for women's lace up shoes Love these!




Image result for women's lace up shoes

                                                               But I wear                                                                        these.                   
                                                                        

Thinking back, I have no idea how my former self tottered around on those ridiculous high heels, platforms, and Candies. I could even "trot" a bit in them. Now, even the slightest amount of lift in a shoe sends me spiraling out of control.
I also have a problem with slip-ons. When I was much younger I always wanted an official pair of polished penny loafers, complete with that shiny coin tucked in that little slot at the top of the foot. (I know...the inner Prep comes out.) The height was never the problem. I just couldn't keep them on my feet. The heel slide was intolerable no matter how many brands I tried. I used to blame my narrow heel, but I know now that it was more likely the way on which I did/did not lift my foot. (Ironic that it was always my right foot then and still is now.)
         
                                                                                                                  Image result for women's penny loafers image with a penny



Although I do not shop much any more, my initial research on footwear brought to me Beorn as  a reliable brand that woks well for me. Not always as pricey as some of the other shoes on the market, Beorn can often be found at J.C.Penney's at a reduced price. But, you do not have to go brand name. When you find a pair of shoes that work for you, the brand is not important.

                                                          


I have also discovered that being able to slip off my shoes, especially when the temperature is warm, is important. Of course, this puts a screw in my lace-up plans, so I go for a Velcro walking sandal. With spring officially opening today, I am excited to get mine out of the closet because I will literally live in these. Socks  or no  socks, this is my pick. Where once I dreamed of being a pearl wearing preppy, I am now a true blue Bohemian flower child. If I could afford Birkenstock's I would own the entire collection. Thank goodness there are a lot of knock-offs on the market that serve just as well.


     Image result for birkenstock mountain sandals                                                    Image result for birkenstock mountain sandals    Teva also makes a nice Velcro sandal and they are especially affordable if you can wear a child's size. Seriously, that is a great ways to shop for shoes if it works for you. I have a small foot, so I wen y son was much younger (with smaller feet), I always took advantage of two-for-one sales at the local children's shoe store.       

Boots are an extremely comfortable idea when weather appropriate.    I can even tolerate a little bit of an incline with boots, but not much more than a moderate  block rise and a square, wedge, or block sole. Once again, J.C. Penney is the place to find reasonably priced boots. Especially this time of year. Winter footwear will certainly be on sale with this being the first of spring.

At one time I had a serious shoe problem; a major fetish issue.   In my early years of teaching, I would often forego food to purchase shoes (with matching handbags), many of which I only wore a few times. Now my rich tastes are rarely evident. And since my son currently wears a men's size 12, I cannot ride on his trips to the shoe store. I might make a ride to our favorite children's store soon just to see if there is anything I can afford to replace the last pair I purchased with him. (Needless to say, that last purchase is getting really thread/leather bare....They are at least six years old and worn hard.)     

What are your issues with shoes and foot care? Although this may sound a ridiculous concern to most people, I know that you know what I'm talking about.

Happy Vernal Equinox!
Lisa  

                           


Sunday, March 19, 2017

R is for READ: The more we READ, the more we know. #WeAreStrongerThanMS

Image result for book emoji
I have anticipated the letter R since the beginning of this voyage into MS alphabet land. I LOVE to read. I will read anything. When I was once accused of being a bibliophile prostitute, I didn't argue. Books are my life.

As a reviewer for Readers Favorite,  I have the unique opportunity to pretty much read for a living. No, I m not making the big bucks, but enough to keep my son in his yearly gifted camp, wearing socks without holes, and enough milk money to get him through. Of course the monetary reward of reviewing is nice, but I selfishly confess that I could not think of a better task for myself. I read EVERY day. I have a book going in every room of the house. Yes, I read multiple books at the same time, in addition to the manuscripts assigned me on line.

So, it is with great joy that MS Alphabet brings me to the letter R.

I often reference books in my blog posts, so you will not be surprised by many of the titles I list today.

Multiple Sclerosis for Dummies is a spectacular reference tool especially for the newly diagnosed or interested bystander. It breaks down our disease in simple, relate-able  language and answers basic questions about MS. When the authors are not certain of an answer they are up front with alternate sites and locations.
https://www.amazon.com/Multiple-Sclerosis-Dummies-Rosalind-Kalb/dp/1118175875/ref=sr_1_1?s=books&ie=UTF8&qid=1489946416&sr=1-1&keywords=multiple+sclerosis+for+dummies

Chef Interrupted by Trevis L. Gleason is a colorful memoir of one man's reaction to his diagnosis. A chef by trade, Gleason makes an enormous decision to his MS to his home country of Ireland, where he communes with nature, the locals, horribly cold weather, and his own life intentions. I LOVE THIS BOOK!
https://www.amazon.com/Chef-Interrupted-Discovering-Multiple-Sclerosis/dp/1603813012/ref=sr_1_1?s=books&ie=UTF8&qid=1489946476&sr=1-1&keywords=chef+interrupted

MS: Living Symptom Free is Daryl H Bryant's story of living with multiple sclerosis. Much like my own book, Bryant shares his own struggles with MS. His tips and recipes, experiences and findings are told in common sense, techie-free language.
https://www.amazon.com/MS-Properly-Controlling-Eliminating-Sclerosis-ebook/dp/B005G82A1S/ref=sr_1_1?s=books&ie=UTF8&qid=1489946524&sr=1-1&keywords=ms+living+symptom+free

The Wahls Protocol is my latest MS reading journey. I am only about mid-way into Terry Wahls' "radical new way to treat all chronic autoimmune conditions using Paleo principles", but am convinced that her studies make good sense. As with anything in life, it is important to be able to "tweek" procedures to fit your own mode of finance and ability. This past week I have incorporated several elements of the Protocol into my daily routine. Unfortunately my finances will not allow me to go totally Wahls, but I have already seen interesting results with the small adjustments I have made.
https://www.amazon.com/Wahls-Protocol-Autoimmune-Conditions-Principles/dp/1583335544/ref=sr_1_1?s=books&ie=UTF8&qid=1489946568&sr=1-1&keywords=wahls+protocol

The MS Recovery Diet by fellow MS Warriors Ann D Sawyer and Judith E Bachrach is a rather daunting book in physical appearance, but is packed full of helpful suggestions for diet, exercise, and life style. No, I have not read this cover-to-cover (yet), but I do use it along side my Multipole Sclerosis for Dummies book as a powerful reference tool.
https://www.amazon.com/MS-Recovery-Diet-Identify-Disease/dp/158333288X/ref=sr_1_1?s=books&ie=UTF8&qid=1489946615&sr=1-1&keywords=ms+recovery+diet

MS Madness! is "A giggle more, cry less, story of Multiple Sclerosis" as told by Yvonne deSousa And that is exactly what it is. It is  personal story, not a medical tome of information. I have shared my copy with several people and received mixed reviews, depending on what the reader was looking for in a book about MS. Personally, I thoroughly enjoyed reading Yvonne's journey. If you need a good laugh, this is a red that will nod your head in sympathy and association.
https://www.amazon.com/MS-Madness-Yvonne-Desousa/dp/0989972364/ref=sr_1_1?s=books&ie=UTF8&qid=1489946656&sr=1-1&keywords=ms+madness

Moody Bitches by Julie Holland, MD, has been holding court on my desk shelf for over a year and I have yet to crack it open. Shame on me. A reference tool that concentrates on the truth behind the drugs we take and the impact said drugs make on our life. I really, really plan to tackle this book after the month of March ends and there is more time to concentrate on reading than writing. I will keep you updated.
https://www.amazon.com/Taking-Missing-Having-Bitches-Hardback/dp/B00VYUY0OW/ref=sr_1_2?s=books&ie=UTF8&qid=1489946695&sr=1-2&keywords=moody+bitches

Another title adorning my shelf is The Gathering Table: Defying Multiple Sclerosis With a Year of Pasta, Wine & Friends by Ronda Giangreco.  Diagnosed in 2008, Ronda refuses to listen to the prognosis that she would soon no longer walk. Instead she walked to her kitchen where she planned a strategy that included her culinary love, the wines of Napa Valley, and Sunday dinners loud with the presence of friends and family. Inspiring? You bet.
https://www.amazon.com/Gathering-Table-Defying-Multiple-Sclerosis/dp/0615589944/ref=sr_1_1?s=books&ie=UTF8&qid=1489946740&sr=1-1&keywords=the+gathering+table

In This Together by Anne Romney is an interesting read and I truly appreciate Mrs. Romney's words of support, but this books reinforces the privileges of money that I have never and will never have. 
https://www.amazon.com/This-Together-My-Story/dp/1250083982/ref=sr_1_1?s=books&ie=UTF8&qid=1489946778&sr=1-1&keywords=in+this+together+ann+romney


Awkward Bitch: My Life with MS Mario Donato Parmelee is the first memoir type story  I read about living with multiple sclerosis. I should have waited a while before scaring myself with this one, but it is an honest narration that should not be ignored.

https://www.amazon.com/Awkward-Bitch-My-Life-MS/dp/1438990480/ref=pd_sim_14_1?_encoding=UTF8&pd_rd_i=1438990480&pd_rd_r=P470NSS96VX6T5TN2SZR&pd_rd_w=eCKtN&pd_rd_wg=VJUjB&psc=1&refRID=P470NSS96VX6T5TN2SZR


And then there is (Ta-Da!) I Have MS. What's Your super Power? by Moi. When I initially published this no-nonsense guide to living with MS, I was so very proud of myself for finally knocking down some walls and publicizing my disease. Since then, the opportunities that the publication of this book have  allowed me in getting the word out, have also humbled me immensely. But, for every doubt I experience with what I wrote, there is a declaration of gratitude that I dared to share my experience. That means that I accomplished my purpose. We are not alone in this MS journey.
https://www.amazon.com/Have-Whats-Your-Super-Power/dp/1882658442/ref=sr_1_fkmr0_2?s=books&ie=UTF8&qid=1489946847&sr=1-2-fkmr0&keywords=I+Have+MS.+What%27s+Your+Super+Powser%3F

There are SO many other tittles out there. Just go to Amazon and be amazed at the number of books on the subject. I am excited for you to share your own reading experience and offer up other titles (for me) to explore.

Now, you are probably thinking that I spend all of my reading time gorging on medical research and MS resources. Nope. Not at all. Nada.

My bedside book right now is The Broken Hearts Club by Ethan Black, a psychological thriller perfect for the last thing to do before turning out the light for a good night's sleep. Under it on my night table stack is Dorothy Must Die by Danielle Paige. No one ever accused me of knowing what not to read at bed time. 😯

On the coffee table with my knitting is Patridcia Hopper's latest Irish novel Corrib Red that I am just itching to get in to.

I admit it. I am a book addict. 

For my current review assignment I am reading Shearwater by D.S.Murphy, which I cannot wait to get back to as soon as I shoot this post into cyberspace. It is good, good, good.

Oh, and I haven't finished reading the morning newspaper.

Looks like I have a lot of reading to do today.

Better get busy!
Lisa

Do you have a Kindle? Check out this site.
www.freepopularbooks.com

Saturday, March 18, 2017

The P's and Q's of MS #WeAreStrongerThanMS



P is for politics. Yep. This is not my forte nor an active interest of mine, but when it comes to anything of importance there is always a political issue that must be  considered. Earlier this month in West Virginia, the legislature met to discuss relevant issues regarding multiple sclerosis. I had planned to go, but ended up sitting this one out. It was timely, though, with MS Awareness Month beginning. Although I no longer take any recommended MS drug, I do take two Ampyra tablets daily as a walking aid. I have a forty dollar monthly copay on a drug that would normally cost over two thousand dollars a month. Without our governmental support, prescription costs would make it impossible for us to afford the medical treatment we need. So, we need to be interested in how politics affect our MS, even if it is a nasty business.

I have been fortunate with my MS prescription costs due to a (pre-retirement) insurance plan, but I am terrified for those Warriors without the means to obtain necessary treatments; Mainly because it is not always the meds that do the best work toward fighting our symptoms and relieving the pain

Massage is an awesome alternative that is not covered 100% by insurance, but as with exercise classes and physical therapy, it is not considered important enough to be covered by my insurance. 'Tis a shame since these are things that REALLY help me get over the rough spots with MS. And, while congress is hashing over the elements of medical insurance, they need to be aware of these things. So, yeah, it is necessary to be politically aware.

I am not telling you to become a hair burning activist, but the more we reveal the realities of MS treatment, the more awareness will be publicized. I hope.

So...P is also for publicity, which is what MS Awareness Month is all about. I am grateful for this month designated to publicize our cause, but we should draw attention to MS all year long. MS is often a silent disease. Let's make some noise. 

Earlier this month that is exactly what I did with the help of our local news team at WBOY and our county self-help group. Hope we did you proud.

http://www.wvalways.com/story/34652377/multiple-scleroses-self-help-group-offering-support-in-fairmont


Since I did not see this on TV myself and my computer speakers are on vacation, I actually have not viewed this, so criticize all you want. 😉I will never know...

In May I will continue my crusade with a public reading at Morgantown Public Library in Morgantown , West Virginia. I wrote I Have MS. What's Your Super Power? fourteen years after my diagnosis. It took that long to wrap my brain around my situation and want to share my story with "my people". So, if you are in the area on May 17, I will see you at 6:30 and will read at 7:00. Sure, I am excited about maybe selling a few books to support my Ampyra habit, but the prospect of meeting other Warriors and discussing MS is even more thrilling to me. Mark it down on your social calendar. I will see you there!

Since we are on the all important letter P, let me share this silly little activity I found on Face Book. It is really kinda cool. You just click on the link and follow the directions to post an awesome portrait of yourself. So P is for post your picture. Celebrate yourself. When you do, share your work with the rest of us!








https://en.nametests.com/test/result/lisa/ps_6392085663/

For the letter P, also mind your Q's as well. Question, question, question. We will not receive answers until we pose the question. Although  I trust medical science, I have learned to trust my gut maybe a bit more. Our bodies talk to us if we listen.

Q is also for quiet time. For reflection, for knitting, for reading, for meditation, or for prayer: This is so important. We owe it to ourselves to spend some quiet time to just breathe. After you busy yourself making noise about the MonSter for the public, balance that with quiet  time for yourself.

Love and Light,
Lisa

LisaAnnetteMcCombs@yahoo.com

Friday, March 17, 2017

O is for On-line support grooups, orgasms, and ye ol'Blarney stone: MS Awareness Month

O is for on-line support groups. Look for them on Face Book. I rarely contribute.  I admit it. I am a lurker. But they are there and very helpful and friendly. 



There are so many groups on Face Book, some private, some public. Most of them are highly guarded and monitored, keeping your identity safe. These are close knit families who generally welcome newcomers and encourage interaction. Even if you do not actively participate in discussions, the plethora of questions and comments encountered will be worth your time. I have learned so much more about my disease by hanging out n these groups.

MSpals: Women Only - Multiple Sclerosis Community

https://www.facebook.com/groups/multiplesclerosisunplugged/?multi_permalinks=1255798327822032%2C1255635014505030%2C1255542704514261%2C1255347997867065&notif_t=group_activity&notif_id=1489681272709825

I particularly appreciate the groups aimed at women with MS (sorry, guys) because female symptoms/complaints are so very unique (duh). And, sense females are truly the backbone of any family (not so sorry, guys), we need that extra support in getting through the day...and night.

Which brings me to an extremely personal and incredibly uncomfortable subject. How do you explain to your significant other the complications MS presents in moments's of intimacy? 

The MonSter is so very inconvenient in these times. In chapter twelve of my award winning common sense guide to living with multiple sclerosis I Have MS. What's Your Super Power?, I talk about just how uncomfortable I am with this subject. 
http://headlinebooks.com/book-author-profile/lisa-a-mccombs/,

https://www.amazon.com/Have-Whats-Your-Super-Power/dp/1882658442/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1489751201&sr=8-1

LisaAnnetteMcCombs@yahoo.com

In a nutshell, the subject of sex is not  a comfortable topic, but MS really  throws a curve in there. So, let's explore the definition of orgasm.Since this word is commonly known as an explosion of sensations, I will confess that I have been orgasmic for the last twenty minutes while consuming my early morning snack of the best red grapes I have every tasted. My mouth is absolutely trembling with delight.

On a more serious note, communication is the key here. If sexual intimacy is important to you, it is necessary to talk about your MS issues with your partner. Because the MontSter pretty much abides by the "don't ask, do't tell" policy, doctors rarely (if at all) mention sexual intimacy issues. This, of course forces us out of the box of comfort if we want answers or advice. Don't let your neuro off the hook. Remember that YOU ARE A WARRIOR and you will confront the issue even at the expense of intimidating the good Dr. After all, you are intimated by said MonSter on a daily basis. He/she gets to go home at the end of the with myelin intact. We do not.

Okay, enough of that. Let' concentrate on the fact that TODAY IS ST. PATRICK'S DAY. 


Yesterday, I had the distinct opportunity to go with my author friend Diana Walker to the Morgantown Public Library to celebrate the latest novel by our Irish author friend Patricia Hooper. Corrib Red is the sequel to Hooper's first novel Kilpara. I really enjoyed listening to Patricia's richly laced Irish accent as she read from Corrib Red, enhancing the with commentary about the setting and historical accuracy of this fictional account of the O'Donovan family.

I cannot wait to begin my Irish journey. Thank you so much, Patricia for sharing your evening with us! There is more to life than MS. 

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If you are looking for a day of Irish goodness, visit McAteer's in Fairmont, West Virginia, for some authentic corn beef and cabbage. Or visit Ireland, West Virginia, to experience a true Celtic celebration.

No matter where the wind blows you today, enjoy every second of it.

Love and Light,
Lisa