Tag Archives: #Syringomyelia

Syringomyelia 1 - Movie 0. A Propensity to Discuss post.

Syringomyelia 1 – Movie 0

Syringomyelia – 1        Movie-going – 0

Yep. Going to a movie lost out to syringomyelia (SM). Hubby and I went to see the movie Dunkirk and it was really good (click here for review) and it was really bad.

No, not the movie, but what seeing the movie did to me. After seeing it on Saturday, I spent all day Sunday, most of Monday and part of Tuesday on muscle relaxers, pain pills, a heating pad, and on the sofa recuperating. No, I am not kidding.

The movie was very intense and I spent probably 100 of its 106 minutes stressed out about what was going to happen and who might die and when the next bomb may hit. Tensed is not a way for me to spend 100 minutes. Or even 30 minutes.

Why didn’t I leave the movie, you ask? Why didn’t I stop watching? Quite honestly, because it never crossed my mind that seeing a movie was going to put me out of action for the next 3 days! Would it cross yours if it had never happened? No, probably not. But I know better now. I had even taken medicine as a precaution to sitting in the chairs at the movie, but even that didn’t help.

Syringomyelia sucks. Just saying.

Syringomyelia 1 - Movie 0. A Propensity to Discuss post.

Other than the pain, there are the “little” things.

I drop things. Sometimes my hand(s) just let go and whatever I was holding is on the floor. I don’t drink out of glass anymore, don’t worry!

I get vertigo at very inopportune times. Like one day I was fine and hubby and I walked into a Subway to get lunch. Ten steps in and the world shifted and began to spin around me. The teenagers behind the counter thought it was great that I was drunk. Until I told them that I don’t drink alcohol. That’ll shut ’em up quickly.

I can’t get to a word sometimes, even though I know it. I was talking to my dad one day about my eyes and was trying to say that I have astigmatism. I know that word. But all that would come out was augmentin. Even after he said it to me, I could not say it back. The next day, I could say it perfectly.

My balance is really bad. If I ever got pulled over and asked to do the DUI test, I’d never in a million years pass it. Except that I don’t drink alcohol, so there is that. (And no, I do not drive when I am heavily medicated.)

My legs and feet go to sleep. Most of the time without me knowing it until I try to stand up. It’s not a pretty sight, I tell you!

My family and sense of humor keep me sane. When I drop something, I just pick it up with a loud thank you that it wasn’t glass, or priceless. When I can’t come up with a word, I generally insert a nonsense or alternate one and those who know me just roll with it. When my balance is bad, I am so thankful for a hubby and kids who non-theatrically steady me.

My faith in God sustains me. There is no possible way I could handle this on my own, so I lean into my faith to help me through the hardest days and I know that I am loved.

So after SM won against the movie, I spent several days reading, watching a couple of no-stress-at-all movies on Netflix and resting. While I did take muscle relaxers and pain meds, the one thing that seemed to help the most was Amish Origins Pain Relief Cream. This stuff is magical on sore and tight muscles! I found it a couple of years ago at a Mennonite bakery that we go to often and the owner assured me that it helped. I have since found it on Amazon (the bakery is 4 hours away) and I still use it.

Syringomyelia 1 - Movie 0. A Propensity to Discuss post.

While I don’t generally post about my issues with SM, I do believe that it is very important to bring awareness to this issue, as there are so many of us out there struggling to live a “normal” life and not let SM control us. But it is an every single day kind of struggle. We don’t want pity. We don’t want unsolicited advice (sorry, we have lots of doctors giving advice). We don’t want to be left alone. We want your support. We want your love. We don’t want to be in pain.

But most of all, we want you to know that sometimes just listening to us rant, without judgment or attempts to “fix” us is the thing we would like most.

 

This post may contain affiliate links. I would never include an affiliate link on any product that I would not completely endorse. So if you choose to purchase through this link, I get a small payment that does not affect your price at all. And I wholeheartedly recommend these linked products!

I never imagined that one day I'd get hurt and never get better. A Propensity to Discuss Post.

I never imagined that one day I’d get hurt and never get better.

I may never have imagined it, but it happened. Just like it has happened to approximately 21,000 other people in the U.S. (American Syringomyelia & Chiari Alliance Project) I have syringomyelia. 

What is syringomyelia?

Syringomyelia (sear-IN-go-my-EEL-ya) or SM, is a disorder from a cyst that has formed in a spinal cord. This cyst, or syrinx, generally grows wider and longer over time. As that happens, part of the spinal cord is damaged and/or destroyed. When the syrinx widens, it presses on nerves that lead from the spine to the arms and legs. It can also push against the spine and discs of the spine, causing them to herniate.

What problems does SM cause?

The injury to the spinal cord caused by the syrinx often leads to increasing weakness in the arms and legs, very sore, stiff muscles in the shoulders, back, arms and legs. There is also chronic, severe pain for many, but not all, people who suffer from SM. There can also be bladder issues (a loss of control, infections).

The signs and symptoms are different from each person with SM. For some, the pain is debilitating. For others, it is a problem but does not completely interrupt their lives, and for some, there are no symptoms at all. There is no real rhyme or reason for a syrinx that has been dormant to begin causing problems. It could be something as simple as a sneeze or a cough or even straining.

What caused my syrinx.

I have had a syrinx for about 14 years. While running one day I started to fall forward and knew I had to protect my head, so I put out my arm and locked my elbow against the fall. I did protect my head from the floor. Unfortunately, my arm took the full force of my fall. Had I broken my arm, the outcome would probably have been much different. However, my arm did not break. I damaged/tore all the ligaments and tendons and my ulnar nerve was displaced. The ulnar nerve is your “funny bone” so that was really not a pleasant experience. (Insert funny/ironic joke here.)

What I have had done in the past.

Over the next 10 years, I had 2 surgeries to reposition that nerve. After the first, scar tissue formed and attached the nerve to the bone. The second corrected that. The ring and pinky finger on that hand remained asleep (for ten years) and there was a good bit of pain involved.

Eight years later, I had an MRI that revealed the syrinx. The neurologist who ordered the MRI began treating me for the SM at that time. I continued to have an MRI once a year and 2 years later there were big changes in my MRI and he sent me immediately to a neurosurgeon.

Post Op. I never imagined that one day I'd get hurt and never get better. A Propensity to Discuss Post. Syringomyelia

Cervical Fusion Post Op. They do go through the front of your neck to get to the damaged cervical area.

Two days after seeing her for the first time I had my first neck fusion or Anterior cervical discectomy and fusion (ACDF). One of the discs in my neck had herniated and pushed the vertebrae into my spinal cord. I was about 1/8 of an inch from paralysis. I thank God that I have an absolutely amazing neurosurgeon. She was able to complete the surgery with no issues.

My second fusion surgery was 364 days later. Same incredible neurosurgeon. No issues. I am fused from C3-C5. This means that I have a titanium brace on my vertebrae that looks like the one pictured below, except mine covers 3 discs where this one is just one.

What I presently do for my SM.

I have 2 MRIs per year. I see my neurosurgeon every 6 months. One conclusion from my last appointment was that I am “in pretty good shape for the terrible shape I’m in.” The syrinx at the top of my spine (cervical) has also caused problems for the bottom of my spine (lumbar). As of now, I have one cervical and three lumbar discs that are protruding and one lumbar disc with a tear. Chances are extremely high that these will herniate and they will have to be fused as well. But at this point, it is just a wait and watch scenario.

I am also a patient of Shepherd Spine and Pain Institute. My doctor and the entire staff are amazing. When your doctor walks in and immediately notices your hair is cut differently, you know for certain he is paying attention to you. He handles all of my pain management medications, procedures, and treatments.

Radiofrequency Ablation. I never imagined that one day I'd get hurt and never get better. A Propensity to Discuss Post. Syringomyelia

Radiofrequency Ablation.

For example, every six months, I have Radiofrequency Ablation on my neck (cervical) and lower back (lumbar). In this procedure, my doctor cauterizes some of the nerves to keep them from causing so much pain. This is a seriously painful process, but it is worth it. An hour of severe pain. Five months of help. Here are two videos that explain the procedure. This one is an animated version. This one is a video of an actual procedure. If you have a weak stomach, choose the animated one.

Dry Needling. I never imagined that one day I'd get hurt and never get better. A Propensity to Discuss Post. Syringomyelia

Needles for Dry Needling

I also have dry needling as needed with an order written by my doctor. This is a process where very thin needles are inserted into muscle tissue that is “knotted.” (I am sure my physical therapist is cringing right now that I called it that, but that is what it feels like – muscles full of knots!) The needle being moved around makes the muscle tense and then release. The effect is immediate. I have gone to an appointment unable to move my neck more than a couple of inches in any direction and after the 15-25 minute procedure been able to touch my chin to my neck and look straight up at the ceiling. Who knew looking at the ceiling would ever be so exciting?

I am on quite a bit a ton of medication. I have 5 different muscle relaxers that I can take. Two of these I only take before bed, one which specifically targets my myoclonic jerks or myoclonus that get worse at night. One I take 3 times a day and the other 2 I can take up to 3 times a day as needed.

What about addiction?

As I wrote in another post, Nope. People who suffer from chronic pain don’t generally become addicted. Our bodies use the medications for purposes other than the euphoria that addicts hope for. Trust me, there’s no euphoria here! ( If you don’t really believe me, check out this link for emedicine health

What my future holds.

Well, it holds more of what I have already been through. As of my last MRI (I now have one every 6 months) I have 1 cervical and 3 lumbar discs that are in the process of herniating. I have a lumbar disc with a tear. It is a waiting game. Waiting to see if they hold their own of if they will decide to give up. In that case, there will be another fusion. If that happens, I’ll face it head on. That is the only way. If it doesn’t, or until it does, I will continue as I am now. Smiling when I don’t really feel like it and moving on with my life.

I don’t say this for pity. Truly I don’t. I do not want to hear “Oh, I’m so sorry.” It isn’t your fault. I don’t want to hear “You’ll get better.” I won’t, but I don’t dwell on that and I don’t want those around me to do that, either. The best thing to do is just acknowledge that I have good days and bad days. On good days, treat me the way you would anyone else. On bad days, treat me the way you would anyone else.

Just know that there are times that I want to do things and my body just says “No.” It’s nothing against you. My body just loves playing tricks on me.

What resources are available.

The very best thing you can do if you are diagnosed with SM is to find a really good set of doctors. You need a neurologist who can refer you to a neurosurgeon if needed. You need a pain management physician.

You also need a really good support system. You can find support groups on Facebook, on blogs, Twitter and even Instagram. There are some face-to-face groups as well, but most of them meet at night and, quite honestly, by the time I get home I don’t have the energy to go somewhere to a meeting. So I settle for online interaction. However, I really think there is a great benefit to meeting people who share your issues.

American Syringomyelia & Chiari Alliance Project

Chiari and Syringomyelia Foundation Handbook for Patients and Families

Syringomyelia Fact Sheet

Carion Fenn Network

Mayo Clinic SM page

MedScape

National Organization for Rare Diseases (NORD)

Rare Connect

Christopher & Dana Reeve Foundation

Worldwide Syringomyelia and Chiari Task Force

Christopher S Burton Syringomyelia Foundation

ASAP list of support groups

ASAP’s main Facebook page (open to the public)

ASAP’s closed Facebook page (only those diagnosed with SM)

Ann Conroy Trust (Great Britain)

What I Didn’t Know About Chronic Illness. Now I Know Better.

Living with Syringomyelia

Brain Facts SM

Disability Information

Getting Social Security Disability for Syringomyelia

 

Anyone out there with SM? Want to talk about it? If you have anything to add, ask, or comment, please let me know. I’d love to hear from you. I do like to connect, but can we connect on here and not meet? I’m tired! 🙂

10 Facts About Me

I started thinking about my “About Me” page the other day and thought that it might be sort of interesting to come up with some facts about myself to share. Some of these I have written about before, some of them are new information.

My hope for this post is that some of you may find out something about me that you find interesting, or that you can connect with or relate to, and that you’ll let me know.

1. I love getting to know new people.

Hence the reason I want to connect with people through this post. I am very curious about other people. (Some may call that nosy. I prefer curious!) I can get really caught up in the stories of other people’s lives, where they live, what they do, what they like/hate/love. I want to know what people read. Then there is the “Six degrees of separation” aspect. I can get really caught up in making connections that way!

10 Facts About Me. A Propensity to Discuss Post.

2. I talk to pretty much everyone.

In line at the grocery store. At the DMV. In Wal-Mart. It is just something I do. I just start with some connection (That is such a beautiful shirt….I have never tried that coffee before, is it really strong?…I love that book….) Most of the time a conversation starts. Let’s face it. People really enjoy making a connection with other people. I believe it is our nature to want to talk to people. Don’t you want to talk to people? Be honest…

3. I used to be extremely shy.

No. Really. I was. I wouldn’t look at people when if I talked to them. This was my life through the 9th grade. That was when my parents (I cannot thank them enough!) signed me up for speech classes with an amazing lady, Mrs. Margaret Lackland. She whipped me into shape, sent me on a stage and made me talk to an entire audience. I happened to like it and that shy girl went to hunker in the shadows and a confident me took her place. If you have a shy child, this is a really good blog post.

4. I am a national speech contest winner.

Mrs. Lackland didn’t stop at just small audiences. Nope. Sons of the American Revolution Oratorical Contest. Local competition…won. State competition…won. National competition…1st Runner Up. Quite the amazing feat for someone who 18 months before was speaking for the first time to an audience of about 30 and nearly passing out before I began.

5. I love to read.

I love to read. I LOVE to read. I read everything from cereal boxes to novels and everything in between. I can get completely lost in a book and tune out everything around me. Just ask my family. They often yell my name to pull me from a reading trance. More about my reading habits can be found here. You can also find my book reviews here. 

10 Facts About Me. A Propensity to Discuss Post.

6. I always have a book with me.

No matter where I am, I have a book with me. If you read my post My reading habits as seen through memes, you have already seen this. But it really is true. My cousins were laughing last week about the time we went to a NASCAR race in Talladega and I took a book to read. The answer to your question is a resounding “Yes. I did read during the race.” I read when I am waiting in line if there is no one to talk to…which sometimes leads to a conversation with others. For me it is the best way to pass time. And I have gotten good at being sneaky. I can read from my phone with very few people knowing it. 🙂 I read when I am riding in the car. I even “read” when I am driving. Which brings me to fact #7….

7. I listen to audio books.

If I am in a car by myself, you could pretty much bet serious money that I am listening to a book. It helps to pass the time and allows me to continue with the book I am currently reading. But the biggest, best part? It helps cut down on my anger at the crazy people driving around me. I even have an iPod for nothing by my audiobooks.

Hubby also listens to audio books if we are on a long trip together and when he is hunting. I know people think this isn’t really “reading,” but it is. You have to pay closer attention and I honestly retain more from listening than reading for myself.

8. I LOVE Gilmore Girls.

Lorelai  and Rory Gilmore are two of my favorite people. They are like familiar, comfortable friends that I can go back to every now and then and reminisce about the good old days. My daughter and I used to record it and we watched it every afternoon after school for 3 years. No kidding. The fast talking, the relationships, the sarcasm, the tone and all the quirky people who live there. I LOVE THIS SHOW!!

If you are also a fan (read fanatic), you need to watch The Gilmore Girls Full ATX Reunion. If not, watch it now as soon as you are through reading this post!

9. I love photography.

I love to take pictures. Of everything. People. Scenery. Buildings. And I recently purchased some HO Scale (model train) workers to make what I call Teeny Tiny Photos. I love these! I have only made a few, but boy are they fun to play around with!

10. I have syringomyelia.

Sometimes I think that I don’t have syringomyelia, it has me. That being said, I do my very best to stay positive and not let this get the best of me. I have good days and I have bad days. On good days, my pain levels are around a 5 or a 6 out of a 10 scale. Bad days are 7-8.  Really bad days I am in the bed moving as little as possible.

I do NOT want pity. I do NOT want anyone to feel sorry for me. I just want people to understand that sometimes my body cooperates and allows me to go and do like anyone else, but some days my body just won’t. And that is not a reflection on the person asking me to do something, it is just the way my body works. Or doesn’t work.

I hope you have enjoyed these tidbits about myself. Do we have a connection? Is there something here that you feel strongly about? Let me know! I’d love to hear from you.

 

 

 

10 Reasons why I think Amazon Prime is worth the cost.

I am not a huge fan of going out and shopping around looking through racks, driving/walking from store to store trying to figure out what those on my gift list might like. I am just not big on shopping and I have a large Christmas list. Ugh!

9 Reasons why I think Amazon Prime is worth the cost. A Propensity to Discuss Post.

However, put a laptop in my lap, connect me to wi-fi, and I am a shopping fiend!

This year for Christmas I purchased 62 gifts, 7 books, 1 movie and received 1 free gift and I received all but 1 of those with free shipping and within 2 days due to my membership with Amazon Prime.

I started my Prime membership a couple of years ago and I can honestly tell you that for me it has more than paid for itself. I do realize it is not for everyone, but there are a few reasons I’d like to point out why it is worth it for me.

I’m sure I’ve mentioned that I’m a media specialist, so it goes without saying that I purchase a lot of books. The majority come from a company that sells to libraries and media centers, but if I need something to be delivered quickly, I generally go with Amazon. As a more than avid reader (see My reading habits as seen through memes) I also purchase quite a few books for myself. 🙂

Also, as previously mentioned, I make a lot of other purchases online as well. Amazon has pretty much anything and everything. I have never searched on it for a way to hide a body, but I would be willing to bet you can buy something for just that purpose. Just kidding, but I rarely have a search come back with no results.

The 10 reasons that Amazon Prime is worth it to me are as follows:

1) Free 2 day shipping

The majority of Prime Eligible items are shipped for free and are received within 2 days. Yes, 2 days! That is so awesome! Have I mentioned that I am not an extremely patient person? Well, I’m not, so waiting a week or else paying extra for speedy delivery is just not high on my happy list. But even I can wait 2 days!

And did I mention shipping is free on Prime Eligible items? Yep…Free!

There is also FREE Same-Day Delivery in eligible zip codes. For more information, go to Order with Prime FREE Same-Day Delivery. This is for major cities, basically, but, hey, I can hope, can’t I, that they will expand this? To check your ZIP Code click this sentence.

9 Reasons why I think Amazon Prime is worth the cost. A Propensity to Discuss Post.

Same day delivery options…for now.

 

2) Prime Movies/TV

Unlimited streaming of movies and TV programs. There are tons of these that are available free to Prime members. Not only that, but some of the items are exclusive.

For example I began watching Downton Abbey after it had been on TV for about 5 episodes. I started watching from the beginning using Amazon Prime. Turns out, I had all the episodes for the entire season available to me before they appeared on PBS. That takes binge watching to a whole new level!

3) Prime Music

Unlimited, no ads and hundreds of ready-made playlists. Plus you can make your own playlist from more than a million songs! For no additional money!

4) Prime Photos

Secure unlimited photo storage in Amazon Cloud Drive. 

5) Prime Early Access

Get 30-minute early access to Lightning Deals on Amazon.com and new events on MyHabit.com, a designer shopping website with some pretty good deals.  

6) Kindle Owners’ Lending Library and Kindle First

If you also own a Kindle, there are thousands of books that you can borrow from the lending library and read and not have to purchase! YAY!! You also get early access to download a new book for free every month from the Kindle First picks.

7) Deals and Discounts, Compliments of Amazon Family

These include 20% off diapers through Subscribe & Save and 15% off eligible products from your baby registry. For more information go to Get 20% off Diaper Subscriptions or About the Completion Discount.

8) Membership Sharing

If 2 adults in the same household both have accounts, the membership can be shared between them.

9) Customers who bought this also…

This is NOT prime exclusive, but quite honestly, it is one of my absolute favorite things about Amazon.com. It is a little bit like “Big Brother” but I love that I can go in and see what other books/items are similar to the things that I like. I can also customize this if there is something I did not like, I can take it off of my history and it will stop showing me similar items.

10) Convenience.

For me, the biggest reason for shopping from Amazon is convenience. If I think of something that I need/want at 9:47 on a Tuesday night, I can just pop on over to Amazon, search for it, check the reviews, and purchase if I decide to do so. In my pajamas. And I don’t have to go anywhere near Spaghetti Junction or a crowded parking lot!

Easy peasy.

Conclusion

For me, Amazon Prime is worth it. However, I purchase from Amazon quite a bit probably because of the convenience most of all. I have faced facts, I am not a patient person. That being said, getting the item in 2 days helps with that character flaw.

While I know that Prime is a good choice for me, I also know that it may not be the right fit for everyone. If you don’t order a good bit from Amazon, don’t pay the extra. However, if you have paid more than about $50 in a year for shipping costs from Amazon products, I think it would be worth it, especially with all the extras that you get.

Just my 2 cents.

 

Disclaimer.

The links on this page go to Amazon-Smile. I do not receive any kickbacks, promotions or privileges from this website. I simply chose this site because it is user-friendly, has plenty of reviews on each book and proceeds from Amazon Smile go to the charity the buyer chooses. My charity of choice for this site is the Worldwide Syringomyelia & Chiari Task Force Inc. Established on September 23, 2014, the Worldwide Syringomyelia & Chiari Task Force Inc. is a non-profit 501c3 organization.  Their mission is to educate the world about Syringomyelia.  Their purpose is to educate the world about this rare disease and provide those diagnosed (including me) with hope by providing durable medical equipment, prescription assistance, and excellent resources within the medical community.

No pity. A Propensity to Discuss post

No pity.

Today I was reading a few Facebook posts, which, quite honestly, is something I rarely do, and I came across one that stated the person was “having an emotional day…mourning the things I used to have, the things I used to be able to do….” It was posted to a chronic pain group of which I am a member.

I do not know this person. This person and I will probably never meet. If we did, I think I would want to just put my arms around him/her and say “You have this all wrong. Don’t regret what you cannot change. Don’t wallow in pity.”

Easy for me to say, right? I have no idea what this person is going through, right? Wrong. I know exactly. I know all too well what chronic pain can do to a person. Trust me.

On Monday, December 22 I had radial frequency ablation to the entire lumbar region of my back. What the heck is that, you may ask. My doctor inserted needles (that are really more like tubes) into my lower back area, then inserted conductor wires in and sent a current of electricity through the wire to cauterize (burn) nerve endings in my lower back.

One more MRI A Propensity to Discuss post

Trust me. I know pain. I subjected myself to this willingly. Knowingly. This is not my first rodeo with RFA. The 50 minute procedure, for which I did not have anything to settle my nerves or to make me even a little loopy, is just shy of unbearable. (Note to self: Do not refuse the loopy drugs next time!)

When I could almost take no more of the pain, the Doc would put his hand on my upper back and count down the timer.

The next 3 days are far from bliss. There is no comfortable position in which to sit. To lay in bed takes a plethora of pillows. My ever-needed heating pad is a no-no: Ice only for 48 hours. Trust me, ice on sore muscles is not my favorite thing.

Walking hurts. Standing hurts. Sitting hurts. And all of this for the hope of a few months with less low back pain. There is no guarantee. It may work. It may not. The pain I am feeling may be from a problem in my lumbar region, or it could be an issue with my syringomyelia. I won’t know for a couple of weeks.

If it doesn’t work, there will be an MRI that happen in January, instead of in June. I have lost count of the number of MRIs I have had. Far too many to count.

The issues that brought on this latest round of RFA are that my left leg has begun to drag a little. My reflexes on that leg are not normal. I have severe pain in my lumbar region. Welcome to my world.

This is the constant life of chronic pain. This is the constant life of syringomyelia. This is my life.

My post, Syringo my what?!?, will explain my life with SM (syringomyelia).

However, I don’t complain. To anyone. Well, my pain Doc knows, but other than that, I keep it to myself.

I don’t want pity. I don’t want sorrow. I don’t want sympathy. I want a life.

I want a life and if I spend my time worrying about the things I cannot do, I will miss out on the things that I can do.

If I spend my time worrying about what the pain takes from me, I will miss out on the life I can manage through the pain.

I used to love to ride roller coasters. I never will. Guess what? There is more to an amusement park than roller coasters. I love photography. There are amazing images to be taken at amusement parks. Another perk?  I can eat what I want there without worrying about losing my lunch after a ride.

I love water parks. I hated having to trudge to the top of them. Don’t have to do that anymore. I no longer have to make excuses to hang out in the lazy river again. I can float all day long.

No pity. A Propensity to Discuss post

As I write this, I am trying to think of things I can no longer do, and to be honest, those are the only 2 things that come to mind. I am certain that if I thought long enough, I would be able to come up with more. But why?

Why would I want to sit around and think of all the things I cannot do, when there are so many things that I can do.

Why would I want to think about the things I used to have, instead of taking pleasure and seeing the beauty in the things that I still have.

Life is what you make of it. Make it happy. Make it positive. And in the words of Tim Gunn “Make it work. “

 

I know this post will bring some negative reactions. Please comment. However, I DO understand about depression. Please do not chide me on that fact. If, in fact, you or someone you love cannot wrap the brain around the idea of changing the way you look at things, PLEASE go for professional help. I am NOT a proponent of suffering through depression without help.

However, if you can change your mindset from negative to positive one thought at a time, please do so. For every negative thought, think 2 positives. If it helps, you are on your way. If not, please do consider professional counseling.

Manners Matter...a Propensity to Discuss blog post.

Manners Matter

Since when did manners cease to matter? I’m not talking about how to set a table for a ten course meal. I mean every day, living life, being courteous to others, manners. There are several that I see regularly that are ignored on a regular basis. So for this post, if you don’t mind, I’d like to talk about some of these and how I think life could be better if everyone followed these simple rules of etiquette.

In stores: Move over so someone can get by you in a store. If you have read my post Syringo my what?!?  you are probably aware that sometimes I have to use a cane for balance. In a store the other day, I was trying to get by a man and woman in an aisle. One polite man had said “Oh, here, let me move my cart so you can get by.” My polite response was “Thank you, very much.” The other couple both stood covering most of the walking area and did not move an inch. The polite man did not care for this much, and said “Get out of the way. Can’t you see she is trying to get by?” They looked at both of us and stood their ground. I waited. Really? if I am blocking anyone’s way, I apologize and do my best to move. How rude it is to stand there like you are the only people alive who matter. I will say that the polite man then told them that they were very rude, and unfortunately broke the one about language around others. In this case, I really didn’t mind. They were exactly what he called them! 🙂

Also, if your child is screaming, crying, begging loudly in a store, take him/her outside. Not only does this teach your child that his/her behavior is not acceptable, but it also allows those shopping without screaming children to do so in peace. Taking a child out of the store and home and returning later without the child (letting them know you are going back without them because they were not behaving appropriately) is a very good lesson for the child. From experience, I know that you only have to do this 2-3 times before the child realizes “stop crying or I will take you home” is not an empty threat, but an actual punishment.

In restaurants: The same rules apply in restaurants for crying babies as the ones in stores. Take them out! If they do not know how to behave in public, teach them before taking them in public. This is really just common courtesy to others.

If you must talk on your cell phone during a meal out, treat yourself like a crying baby and walk outside. No one in the restaurant, including those at your table, want to sit through a one-sided conversation.

Saying please and thank you: This one should be as ingrained in your every day life as breathing. There is just no other way to put it. Say please EVERY TIME you ask for something. Say thank you ANY TIME someone puts something in your hand from theirs, or a compliment from their mouth to your ears. Please.

Waiting your turn: You learned this one in kindergarten. Do not break in line. You are no more important than anyone else waiting for their turn and your time is no more valuable than anyone else’s. No matter how much you think of yourself, this is the truth. After waiting 2 hours and 39 minutes the other day at the DMV to have my license renewed, this one hits home with a big pow for me right now!

Minding your language: Speaking of the DMV, it took me 1 hour and 47 minutes of STANDING in line waiting to get a number to be served. Maybe I should direct a post to them about wasting other’s time and working efficiency. Could they not just hand you a number at the door and have you wait while sitting to determine if you had all your paperwork? Anyway, I digress…

Three people behind me was a young girl of 18. At first, all was well. Then about half-way through the waiting, she began to drop the “F-bomb.” There, right in front of her, was someone’s grandmother. The first time, I ignored it. The second and third times, I gave the grandmotherly lady a shake of the head and a frown. The fourth time, I politely turned to her and said, “Would you say that in front of your grandmother?” She furrowed her brow and then said “No.”  I swept my open palm to the older woman and said “Meet someone else’s grandmother. She doesn’t want to hear it, either.” Thankfully someone had taught her manners at some point, because she apologized to the woman, who said to her, “Always consider others when you speak out loud.” Manners. Good ones.

Common courtesy: A couple of days ago I was heading into a store. There was a senior saint waiting patiently to enter, much more patiently that I probably will when I am 80 or so. Three 20 somethings walked out of the store and completely ignored her. Really? Would it really ruin your tight schedule to hold the door for this woman, people? If you are not emergency personnel on your way to an accident scene, you should hold the door for others, no matter their age, who are entering/leaving through a doorway.

Anytime someone appears to be older than you,they should have first dibs at whatever it is you are doing. Buffet line? That food will still be there when they get through. Door? Hold it for them! Restroom? I can tell you that the older you get, the smaller your bladder feels! Just be polite, people!

Don’t ask personal questions:The other day my neighbor asked my hubby how much it was going to cost to redo the railing on our front porch. They are not bosom buddies. Not really appropriate. A friend whom he talks to 4-6 times a week asked. Close friend? Appropriate. Acquaintance…not so much.

Telemarketers – not only is this entire practice a nuisance in my opinion, but I am NOT going to tell you my income. Nope. Not happening. I completed a survey the other day and was asked for this information. I declined. The person told me it would cancel out all of my answers. So sorry that you wasted my time, then, buddy. I do not give out personal information to complete strangers. It is positively rude to ask.

Talk quietly: If you are in a public place, always consider that not every one cares about you and your conversation. I certainly don’t. At a very nice restaurant the other day, hubby and I could not even carry on a conversation because the people behind us were so loud. Get a grip, people. I do not care about your life when I am trying to peacefully live mine!

In the waiting rooms of every doctor I see (again, Syringo my what?!? , there are quite a few of them) there are signs that say Please turn off your cellphones. YES, THIS MEANS YOU, TOO! Why is it that certain people think they are not the intended targets for those types of signs? ARGHHHH! Also, if you have someone with you, whisper, talk softly. Do not talk in a normal volume of voice, be considerate of others, and think that maybe they would like to have some time alone without having to hear your entire conversation.

Just think it through. My history teacher in high school used to quote Oliver Wendell Holmes by saying “Your right to swing your fist ends where another person’s nose begins.” It is true. I can swing all I like, but others have a right not to be hit. This is true not only of fists, but also of the rights of all to be treated with respect and dignity and not to have to endure Emily Post’s worst nightmare in public!

Syringo my what?!?

So I have had this debate going on in my head today about whether or not one of my first posts should be about the other side of me. Considering that I am having a very “syringo” day, I decided that I might as well go ahead and tackle it.

I have a condition known as syringomyelia. Well, now, that’s a mouthful. It even gets a squiggly red line saying it is some spelling gone horribly wrong. It does…really…try it on your computer!  Anyway, It is pronounced (sear-IN-go-my-EEL-ya) and it sucks sour lemons. Except that I like lemons, so let’s say it is not a fun summer walk in the park.

According to the National Institute of Neurological Disorders and Stroke (NINDS) Syringomyelia is a disorder in which a cyst forms within the spinal cord.  This cyst, called a syrinx, expands and elongates over time, destroying a portion of the spinal cord from its center and expanding outward.  As a syrinx widens it compresses and injures nerve fibers that carry information from the brain to the extremities.  Damage to the spinal cord often leads to progressive weakness in the arms and legs, stiffness in the back, shoulders, arms, or legs, and chronic, severe pain.  Other symptoms may include headaches, a loss of the ability to feel extremes of hot or cold (especially in the hands), and loss of bladder and other functions.  Each individual experiences a different combination of symptoms depending on where in the spinal cord the syrinx forms and how far it extends.  Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing or straining.

Mine is from an injury, but that is a long story. And, while the NINDS is a very smart group of folks, there are a few things they don’t tell you when you get this word handed to you with a shake of the head is that there are a symptoms that kick you on your butt. Regularly. With Passion.

So here is a list:

Progressive weakness and pain in back, shoulders, arms, or legs. Which is not so bad unless you want to lift more than say 10 pounds. That’s my limit. Do you know that many textbooks weigh more than that? Also, no repetitive motions. Gee, as a media specialist, I don’t do that at all when I check in/out books or shelve books.

Inability to feel hot or cold normally.  HA! This is a funny one. “Abnormally intense reaction to hot or cold” should be inserted here. You know how if you are actually ironing a shirt (instead of chunking it back in the dryer with a damp cloth and hoping for the best) and you swipe your hand over the area you just pressed. Yeah. Don’t. Ever. Do. That. Searing pain all the way to the middle of your back. Also, put a Koozie on that soft drink can. Yes, soft drink or water glass. *Alcohol is a no-no considering all the medications that I take. Not a problem for me, I didn’t imbibe anyway. Ironically, I don’t like the feeling of being out of control that alcohol gives you.

Difficulty in walking. Let’s just say that I have been presumed drunk on more than one occasion. (*See above) Standing can also be an issue. You know the DUI test walk? Yep, I’d fail big time! NO BALANCE! It is actually quite comical. Fortunately for me I have a really good sense of humor and laugh off the majority of the leanings, falls and sideways walks.

Yep

Yep

Vertigo. Add this one on a regular basis to the one before and you REALLY have everyone thinking you are a drunk!

Neck pain. Severe. However, I have grown accustomed to it, so for me it is just a part of waking up every day.

HOW DO I DEAL WITH THIS?

I go to the doctor. A LOT. I have a neurosurgeon, a pain specialist, an endocrinologist and a general practitioner. My pharmacist and pharmacy techs are on a first name basis. I take enough muscle relaxers (3 different types, 3 times a day, alternately) every day to stop a horse. However, for me, it is just what it takes to keep me upright. No, they don’t make me sleep all the time. Chronic pain apparently causes the body to react differently to medications. I also wear a pain patch that leeches an opioid into my body every hour.

WHAT ABOUT ADDICTION?

Nope. People who suffer from chronic pain don’t generally become addicted. Our bodies use the medications for purposes other than the euphoria that addicts hope for. Trust me, there’s no euphoria here! ;( If you don’t really believe me, check out this link for emedicine health

So today as I contemplated writing this post, I have a new issue. An electrical shock sensation emitting from my spine. Hmmm. Another call to the neurosurgeon. It could be an inflammatory issue somewhere, or it could be something “else.” Tomorrow I will call to check with her. I see another MRI in my future. This will be my 7th in four years. Oh, and did I mention I’m severely claustrophobic? Another post maybe…