Category Archives: Living

Just the discussions of a person who loves life, loves to have fun, and loves laughter from herself and from others…

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!

The Detective Ella Marconi Series

Ella Marconi is a no-nonsense, get-the-job-done homicide detective living and working in Sydney, Australia. Author Katherine Howell, a former paramedic, always gives Ella a run for her money with the cases that she puts before her and also with paramedics and their work calls thrown into the mix. So if you like mysteries and you like medical dramas, you’ll LOVE the Ella Marconi series. If you like one or the other, you’ll LOVE the Ella Marconi series.

I really like Howell’s writing style and I love that she uses her experience as a paramedic around which to base her secondary characters’ lives and stories. The series began in 2007 and is still going strong, with the last one published in 2015, and hopefully more to follow!

Frantic (1) 

In an instant, life changed completely for Sophie Phillips – her police officer husband, Chris, is shot on their doorstep and their ten-month-old son, Lachlan, is abducted from his bed. While the police, led by Detective Ella Marconi search not only for their colleague’s child but also investigate the very strong possibility of police corruption, Sophie begins her own search for Lachlan.

Detective Ella Marconi Series. Propensity to Discuss reviews.

But through it all, Sophie has to wonder if a terrible mistake she made will mangle her hope and efforts at finding her child. And what about Chris, is he a part of the corruption, or is he the one who brought it to the attention of the news media? The longer Lachlan is missing, the more Ella and her team know they are working against the odds to find him.

The audio version of this book is performed by Caroline Lee, whose audiobook performances I always absolutely love! She is actually the reason I purchased this novel to begin with but the writing and the story brought me back to the series. For other Caroline Lee audiobook reviews, check out this post or this one.

The Darkest Hour (2)

In the second Ella Marconi book, paramedic Lauren Yates finds herself alone in an alley helping a man that she knows all too well, Miles Werner. A man she knows to be angry, hateful, deceitful, and most of all, dangerous. All the while, another man lays dead in the same alley. When she begins to help Miles he threatens her life, her sister’s life and the life of her niece, Mile’s own daughter.

Detective Ella Marconi Series. Propensity to Discuss reviews.

Terrified of Werner’s threats, she lies to Detective Ella Marconi, to her sister and to her partner and sets into motion a trail that leads to even more victims. Lauren becomes desperate and has no idea how she will ever get out of this mess alive. Ella knows something is not right with Lauren’s testimony and knows that she must be hiding something. She will have to gain Lauren’s trust to get to the bottom of this case.

Unfortunately, there is no audio for this, but the book was a really good, pretty quick read and I really recommend this series.

4 Stars. A Propensity to Discuss Review.

 

This post contains 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 whole-heartedly recommend these linked products.

A – Z Romantic Comedy Movies

In continuing with my A-Z listings theme that I have used before, (A – Z Books for Adults; A – Z If I Were Stranded on a Deserted Island)  I have gone with one of my go-to types of movies, romantic comedy.

I did have to take a little poetic license with a couple, and there is one of those that is a stretch to make it a rom-com, but I’m not the one who names the movies. Let me just tell you, those people are sort of stingy about using the letter Q!

Hope you enjoy this. If you haven’t seen these, I highly recommend them all!

A*American President, The (Michael Douglas, Annette Bening)      [Amazon, IMDB]

BBreakfast At Tiffany’s (Audrey Hepburn, George Peppard)     [Amazon, IMDB]

CClueless (Alicia Silverstone, Stacey Dash, Brittany Murphy)     [Amazon, IMDB]

A - Z Romantic Comedy Movies. A Propensity to Discuss Post.

DDeeds, Mr. (Adam Sandler, Winona Ryder)     [Amazon, IMDB]

EEnchanted (Amy Adams, Patrick Dempsey)     [Amazon, IMDB]

FFailure To Launch (Matthew McConaughey, Sarah Jessica Parker)     [Amazon, IMDB]

A - Z Romantic Comedy Movies. A Propensity to Discuss Post.

GGrease (John Travolta, Olivia Newton-John)     [Amazon, IMDB]

H*- How To Lose A Guy In 10 Days (Kate Hudson, Matthew McConaughey)     [Amazon, IMDB]

IIt’s Complicated (Meryl Streep, Alec Baldwin, Steve Martin)     [Amazon, IMDB]

A - Z Romantic Comedy Movies. A Propensity to Discuss Post.

JJust Go With It (Adam Sandler, Jennifer Aniston)      [Amazon, IMDB]

KKnocked Up (Katherine Heigl, Seth Rogan)     [Amazon, IMDB]

LLife As We Know It (Josh Duhamel, Katherine Heigl)     [Amazon, IMDB]

A - Z Romantic Comedy Movies. A Propensity to Discuss Post.

M*My Big Fat Greek Wedding (Nia Vardalos, John Corbett)     [Amazon, IMDB]

NNotting Hill (Julia Roberts, )     [Amazon, IMDB]

OOne Fine Day (Michelle Pfieffer, George Clooney)     [Amazon, IMDB]

A - Z Romantic Comedy Movies. A Propensity to Discuss Post.

P*Pretty Woman (Richard Gere, Julia Roberts)     [Amazon, IMDB]

QQueen* (Kangana Ranaut)     [Amazon, IMDB

RRoxanne (Steve Martin, Darryl Hannah)     [Amazon, IMDB]

A - Z Romantic Comedy Movies. A Propensity to Discuss Post.

S*Sweet Home Alabama (Reese Witherspoon, Josh Lucas, Patrick Dempsey)     [Amazon, IMDB]

TTwenty-seven (27) Dresses (Katherine Heigl, James Marsden )      [Amazon, IMDB]

UUgly Truth, The (Katherine Heigl, Gerard Butler)     [Amazon, IMDB]

A - Z Romantic Comedy Movies. A Propensity to Discuss Post.

VValentine’s Day (Jessica Alba, Bradley Cooper, Patrick Dempsey)     [Amazon, IMDB]

WWhile You Were Sleeping (Sandra Bullock, Bill Pullman)     [Amazon, IMDB]

X – SeX And The City (Sarah Jessica Parker, Kim Cattrall, Kristin Davis)     [Amazon, IMDB]

A - Z Romantic Comedy Movies. A Propensity to Discuss Post.

YYou’ve Got Mail (Tom Hanks, Meg Ryan)     [Amazon, IMDB]

Z –  CraZy, Stupid, Love (Steve Carell, Ryan Gosling, Julianne Moore)      [Amazon, IMDB]

A - Z Romantic Comedy Movies. A Propensity to Discuss Post.

 

One other one that I dearly love and watch over and over and over is Sabrina, both the original (1954 – Humphrey Bogart, Audrey Hepburn) [Amazon, IMDB] and the remake (1995 – Harrison Ford, Julia Ormond) [Amazon, IMDB]

A - Z Romantic Comedy Movies. A Propensity to Discuss Post.

*Favorites that I can watch over and over.

**Okay, so I took a little poetic licensing with this one. It’s not really a rom-com, more of a falling in love with oneself. But how many movies with Q in the title are there?

This post contains 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 whole-heartedly recommend these linked products! The only one I have not seen is Queen and that link is not an affiliate. 

Two more children…

In 1996 when my doctor told me that my body could not handle another pregnancy, I was so very hurt. This was after a very difficult pregnancy in which I had gone into labor at 31 weeks. I had three amazing and beautiful children and absolutely no reason to be sad, but I had really wanted another one. So I was hurt. Not devastated, not depressed, just sad.

Two years ago, however, I defied the doctor’s orders and added another child.

Two more children...A Propensity to Discuss Post.

This past weekend, I added child number five. And my body didn’t have a say in it at all.

Two more children...A Propensity to Discuss Post.

You see, these two beautiful, amazing children were added through marriage. You may be saying, yes, but they aren’t really your children. To you, I say yes, they are. I did not give birth to them, but I could not love them more if I actually had given birth to them.

When each of my children was born, I began praying for their future spouses. That may seem a little strange to some people, but to me, it was just what I knew I needed to do. And let me tell you, God is good! My prayers were answered with two very different girls, for my very different boys. Both of my sons married girls who suit them to a T. And there is no doubt in my mind that this was no coincidence. It is good, old-fashioned answered prayer.

The thing is, not only have I gained 2 amazing new daughters, I have gained incredible extended families, as well. During the planning of both weddings, Hubby and I had the pleasure of getting to know the in-laws, and what a blessing that has been. It has been such a wonderful experience getting to know them and forming a bond that is something beyond friendship.

I just cannot express how thankful I am that our lives have been so blessed by these new editions, how much I appreciate the way these girls love my boys, or how much we love them. Thank you, K and A, for seeing our crazy, wacky, loving family and joining in. I honestly feel as though you’ve always been a part of us and I look forward to all the craziness, love, and laughter to come.

Two more children...A Propensity to Discuss Post.

All of my girls!

Do any of you have a special bond with your newest family members?

One note that rocked my world…for the best.

I went to a very small school from 1st through 12th grade. We had somewhere around 400 students in all the grades combined. We also had a shared library. The books were in an L shape and the elementary and middle school students had an area, and the high school students had an area. And as Kipling said, “never the twain shall meet.”

As a 7th grader, I was NOT allowed on the high school side. And I certainly could not check out a book from that area. So when I pulled one that had caught my eye several times and confidently took it to the circulation desk, I knew, really, that I wouldn’t get away with it. However, I was told that if I had a parent note, I could check out that book.

HA! At home that night, I just mentioned that there was a book that I wanted to check out and I couldn’t. Sympathy at home? Nah…something more resembling a quiet fury. If they had been looking at me, they probably would have seen a small, sneaky smile. Note in hand, the next day I got my prize: John Steinbeck‘s East of EdenThe librarian had held it for me, knowing I’d get the note. That magical piece of paper, written and signed by my dad, said I could read anything I wanted to check out. Handing it over, she told me that I was going to love that book. And I did. I still do.

East of Eden. One note that rocked my world...for the best. A Propensity to Discuss Post.

John Steinbeck is still one of my favorite authors, even when so many high school students find his books boring…I was allowed to choose it. It was some forbidden fruit and I could have it. Yum!

My love of reading had obviously developed long before then, but that led me to more than a love of Steinbeck and literature. It led me to a realization that my parents trusted me to make good decisions. They trusted my judgment. They allowed me to choose for myself. And they never once went back on that. They never once questioned any book I read. Ever. Did I read things I was too young to understand? Probably. Did I read things that many found inappropriate? Absolutely. Was I warped from this? Not one bit.Was my brain corrupted? No. Did I turn into an immoral, unethical, spiritually damaged adult? Certainly not. Did I go to college extremely well-read? Yes. I did. Did it help me? No doubt!

Avid readers read for the story and the nuances, not for foul language or erotic scenes. Honestly, I generally gloss over all of that. Only if the foul language is in every other sentence do I notice. And I tend to agree with John Grisham on that…If that is the case, the writer doesn’t have a great grasp on language.

I just think that if you like to read, you should read. Anything. Everything. If you don’t like to read, it’s because you are reading the wrong things. And yes, reading the newspaper is reading. Reading blogs is reading. Reading comic books/graphic novels is reading. Just find what interests you and read about it.

As for the note that my parents sent to school, not only did they trust me, but they also saw the value in reading and how much a person can learn from reading. Never once did they ever imply that a book was inappropriate for me or anyone else, for that matter. Challenge a book? Never! Just because it isn’t right for one or two people, doesn’t mean that it isn’t right for anyone.

I have since thanked my parents for that note and for allowing me to read whatever I liked. There is no real way to tell them just how thankful I am and how much it means to me now.

As an adult, when Harry Potter first came out, I wanted to know what all the fuss and fury was about. Ten pages in I was hooked. I started reading it because it was a little more of that “forbidden fruit.” Yum again. Personally, I think some of the fire around that book was fanned by the publishers for this very reason. Call me cynical.

I do not think that all books on the Banned/Challenged list are put there by overzealous publishers looking for hype. However, if you have a little publicity going your way and you know you have something that bad publicity will not destroy, you should probably use it to your advantage. After all, bad publicity certainly worked for HP!

All of this being said, I was shocked to find out later in life that there are people who seem to get their life’s thrills from working to ban books from everyone just because they do not approve. Go figure! Why don’t we just burn them all and be done with it. Let’s just be a completely uncultured, uneducated society. Heck, let’s go live with the wolves after that!

You may be surprised to see some of the books on the Banned/Challenged lists. The list below is the Top 50 Banned/Challenged Books from 2000-2009: (The full list is 100, click the link to see the rest.)

1. Harry Potter (series), by J.K. Rowling

2. Alice series, by Phyllis Reynolds Naylor

3. The Chocolate War, by Robert Cormier

4. And Tango Makes Three, by Justin Richardson/Peter Parnell

5. Of Mice and Men, by John Steinbeck

6. I Know Why the Caged Bird Sings, by Maya Angelou

7. Scary Stories (series), by Alvin Schwartz

8. His Dark Materials (series), by Philip Pullman

9. ttyl; ttfn; l8r g8r (series), by Lauren Myracle

10. The Perks of Being a Wallflower, by Stephen Chbosky

11. Fallen Angels, by Walter Dean Myers

12. It’s Perfectly Normal, by Robie Harris

13. Captain Underpants (series), by Dav Pilkey

14. The Adventures of Huckleberry Finn, by Mark Twain

15. The Bluest Eye, by Toni Morrison

16. Forever, by Judy Blume

17. The Color Purple, by Alice Walker

18. Go Ask Alice, by Anonymous

19. Catcher in the Rye, by J.D. Salinger

20. King and King, by Linda de Haan

21. To Kill A Mockingbird, by Harper Lee

22. Gossip Girl (series), by Cecily von Ziegesar

23. The Giver, by Lois Lowry

24. In the Night Kitchen, by Maurice Sendak

25. Killing Mr. Griffen, by Lois Duncan

26. Beloved, by Toni Morrison

27. My Brother Sam Is Dead, by James Lincoln Collier

28. Bridge To Terabithia, by Katherine Paterson

29. The Face on the Milk Carton, by Caroline B. Cooney

30. We All Fall Down, by Robert Cormier

31. What My Mother Doesn’t Know, by Sonya Sones

32. Bless Me, Ultima, by Rudolfo Anaya

33. Snow Falling on Cedars, by David Guterson

34. The Earth, My Butt, and Other Big, Round Things, by Carolyn Mackler

35. Angus, Thongs, and Full-Frontal Snogging, by Louise Rennison

36. Brave New World, by Aldous Huxley

37. It’s So Amazing, by Robie Harris

38. Arming America, by Michael Bellasiles

39. Kaffir Boy, by Mark Mathabane

40. Life is Funny, by E.R. Frank

41. Whale Talk, by Chris Crutcher

42. The Fighting Ground, by Avi

43. Blubber, by Judy Blume

44. Athletic Shorts, by Chris Crutcher

45. Crazy Lady, by Jane Leslie Conly

46. Slaughterhouse-Five, by Kurt Vonnegut

47. The Adventures of Super Diaper Baby: The First Graphic Novel by George Beard and Harold Hutchins, the creators of Captain Underpants, by Dav Pilkey

48. Rainbow Boys, by Alex Sanchez

49. One Flew Over the Cuckoo’s Nest, by Ken Kesey

50. The Kite Runner, by Khaled Hosseini

Are there any books on this list that surprises you? Which ones?  Do you read anything and everything? Have you ever wanted to challenge a book? If so, which one and why? I’d love to know.

Amazon Affiliate Disclosure. A Propensity to Discuss Review.

Amazon Affiliate Disclosure. A Propensity to Discuss Review.

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! 🙂

How to Waste Time And Love Doing It. A Propensity to Discuss Post.

How to waste time…and love doing it!

I just spent close to 2 hours on one website just looking, dreaming, imagining, adding to my cart and leaving. Without actually buying anything! Can you believe that?

Yep. I did. And it was glorious! A mind-cleansing, refreshing bit of time that gave me a lot of really good ideas and future help.

What, you may ask, was I doing? I was on a website that I stumbled upon through Pinterest. (I know, you’re shocked!) Don’t be…I am a bit of a Pinterest addict.

The website is Consumer Crafts and it is a plethora of items from crafts to home decorations to art supplies and it is…are you ready…inexpensive! Really…not expensive at all!

I am getting ready to move my craft room to a larger space and get organized, so seeing this paper storage pin…

Paper Storage. How to Waste Time And Love Doing It. A Propensity to Discuss Post.

I followed the trail. And boy was I surprised at what I found! That Craft Paper Organizer that is 8.5″ X 11″ is only $3.27.  Yes, you read that correctly! WOW! I put a few of those in my cart!

This started to search pretty much the entire Consumer Crafts site. They have everything from jewelry to scrapbooking, crafts and hobbies, kids’ crafts, art projects to storage items. Not to forget home decor, seasonal, floral, party, and bridal items. It’s a smorgasbord! Whew…makes me tired just typing it all!

20 Compartment Plastic Organizer. How to Waste Time And Love Doing It. A Propensity to Discuss Post.

This 20 Compartment Plastic Organizer is priced at a whopping $2.67! I have a couple of these but have needed a few more for small items. The last one I bought was almost $8.00. Think I’ll be buying these from now on.

30 pack storage jars. How to Waste Time And Love Doing It. A Propensity to Discuss Post.

Beads and small trinkets can end up all over the place. This 30 pack Round Craft Organizers is $6.97 and they are stackable.

Each pack contains:

  • 12 – 1.5 inch (40mm) diameter containers
  • 10 – 2 inch (50mm) diameter containers
  • 8 – 2.75 inch (70mm) diameter containers
  • 12 matching lids (4 of each size)

The true test will be whether or not the lids are tight. Nothing worse than dropping one of these suckers full of tiny beads and having them scatter from here to eternity!

Owl door handles. How to Waste Time And Love Doing It. A Propensity to Discuss Post.

I am an owl girl and not just a fly-by-night one (pun intended). Owls hold a special place for me because of my dad. Kind of a long story that I’ll let you in on one day. So for the cabinets in my new craft room, these Decorative Owl Knobs, at a mere $2.97, each will be coming home to roost.

Clear Fillable Light Bulb Ornaments. How to Waste Time And Love Doing It. A Propensity to Discuss Post.

No, these don’t really have anything at all to do with outfitting my new craft room. They are just so stinking cute! And there are tons of projects on Pinterest to make with light bulbs. But for whatever reason, I am incapable of taking out the filament as they all show and say that it is “so very easy” to do. So instead, I’ll just buy some of these Clear Fillable Light Bulb Ornaments at a very easy-on-the-wallet $0.97.

And then I found this beauty:

DIY Ceramic Christmas Tree. How to Waste Time And Love Doing It. A Propensity to Discuss Post.

An Old Fashioned Ceramic Christmas Tree for only $14.97! Yep, we used to have one of these lovelies on our huge stereo/record player monstrosity. And I was always fascinated by it. I have no idea what happened to it, but I did find a place near me that I could purchase one, unfinished, just like this, for a mere $125.00. Ahem…no thanks. I’ll keep looking. And now…TA-DA! Here it is! On Consumer Crafts and it will be mine! (Just as soon as it comes back in stock!)

Flame Shaped Ceramic Christmas Tree Lights. How to Waste Time And Love Doing It. A Propensity to Discuss Post.

Do not fret. Do not fear! The Bulbs for this classic American Beauty that is the  Ceramic Christmas Tree are only $2.67 per package! They will be mine also. I am after these like the Grinch before his heart grew!

SOOOO…now you know how I wasted nearly 2 hours in one place at one time. I found so many things on this site. Right now I am sitting on a cart containing 12 items for a total of $39.64. However, so as not to be a complete impulse buyer, I usually leave things in the cart for a few days just to make sure that I really, really need/want them. If in a few days, I still think I need them, I’ll go in and strike the deal.

But for now, I am just so happy to have found the gems that I have found so far! And I’ll be posting about my craft room move later. So keep in touch!

Have any of you been to Consumer Crafts  before? If so, how was the service? The shipping? The experience? Was there anything enlightening, like the Ceramic Tree was for me?