15. Music, Music, Music 

Crank it up! Music has the ability to lift your mood like nothing else, except maybe those cute kitten Youtube videos. It can transport you into the past, to a time when you felt happiness, love, friendship, sadness (just skip those songs), etcetera. Play some old tunes from your high school years, and I guarantee you’ll instantly tap your foot and sing along! Once I learn the lyrics to a song, they seem to be permanently etched into my brain, unlike all those facts I spent so many hours trying to memorize in school.

I think I got my love of music from my grandmother because she loved to listen to everything under the sun, and I do too. I don’t fit into the target audience for Katy Perry or Awolnation, but I love their music. My kids are probably just happy I couldn’t drive them anywhere and embarrass them with my music selections.  Although, I don’t always enjoy the music they choose either.  I remember one day sitting on the porch  supervising my daughter doing yard work and I wondered how many people drove by and didn’t see her crouched down beside the car pulling weeds, and just saw me, heard her music, and thought I was the one jammin’ out to ,”You’re A Douche Bag”.

Live music is the best.  There really is nothing like a concert to make you forget about everything except the music you are listening to.  Singer/songwriter Michael Franti and his wife, Sara, know how much music can affect people in a positive way, and they created a foundation called, http://www.doitforthelove.org which gives concert tickets to anyone who is living with a serious illness.  Depending on the musician and their schedule, sometimes they can arrange for a “meet and greet” with the musician, as well as free concert tickets.  If you are able to donate to their foundation, do it!  I went to an awesome concert to see John Mellencamp last year, thanks to “Do It For The Love ” foundation.  I try catch a concert or two every summer.  This summer, I’ll see Alice Cooper, ZZ Top, and Arlo Guthrie. 

Whenever you are feeling down, give it a try. Listening to your favorite songs or finding new music is so easy now, no CD (or album or 8 track or cassette tape, depending on your age) purchase required,  Thanks to internet sites like Amazon Music, or Spotify (or many others), Just type in the name of your favorite artist or song,
and let the musical healing begin!

15. Moves Like Jagger

I got to see my rockstar urologist, Dr James Lingamen, this week.  In the world of urology, he is Mick Jagger.  For approximately the price of a concert ticket, I get a private meet and greet with him every year, also known as my yearly check up.  I didn’t know anything about him  three years ago when I picked his name out of a long list of urologists approved by my insurance company.  I didn’t know that people travel from all over the country, and even from other countries to be treated by him.  He was not my first choice by the way, but the Universe/God made sure I ended up with the best urology surgeon in the U.S., or so I was told by every person who saw his name on my hospital paperwork.  He  informed me that my golf ball sized kidney stone, and smaller stones would have to be removed surgically because they were causing infection throughout my body., and that you actually could die from a kidney stone (or rather, the infection it causes).  Even though I couldn’t move an inch on my own, and had an FVC so low that I could not be put under using anesthesia, and could not lie down flat (for a surgery usually performed with the patient lying on their stomach), Dr. Lingamen said he had performed this surgery on difficult cases before with patients using a local (patient awake).  He seemed to think it would be no problem whatsoever.  What he was actually thinking, I don’t know, but he made me feel like it was no big deal.  I got the feeling, later on after hearing comments made by others involved with the surgery, that it was indeed, quite a big deal.  I went in for surgery and found out it would have to be delayed a month due to the amount of infection throughout my system.  A stint was put in (a dreadfully unpleasant procedure) and I was given a month of strong antibiotics.  Fast forward to around a month or so later, and after two days and two surgeries, all my stones on the right side were gone.  I don’t recommend having surgery under a local and wide awake, but if that’s your only option, it’s doable.  Luckily, during my surgeries there was so much going on all at once and so many people talking, that it was hard to concentrate on any one thing, and the hours flew by.  I could definitely tell that the people in the room were used to the person on the operating table being asleep, it seemed like my feet and legs were constantly being bumped into, as if I were just a piece of furniture.  But the most important people, my surgeon and anesthesiologist, were very aware that I was awake.  They even cranked up the heat for me in the very cold operating room.  I was placed in the pulmonary wing for recovery, due to ALS related breathing issues.  Except for a couple of bad eggs, I had the most awesome nurses who worked so hard and were such a huge help.  My bed was amazingly comfortable.  I wish I had the same self adjusting mattress at home.  I ended up with a small private room, which meant quiet and I could set the heat on whatever I wanted.  My favorite nurse even brought in a roll away cot so my husband could stay with me the entire time, which he did by the way, for four days with very little break.

  After four days, I went home.  I really wouldn’t want to do it all again, but I did it! And now I have a great story I can tell, although I rarely bring it up in conversation.  Usually it’s my husband who recounts the story of my courageous surgery.  This week, before I talked to my doctor, I met with a Fellow working with him.  As we talked about my surgery, he said he wished he could take me around to talk with some of the whining patients who need simpler procedures but complain about how hard it will be for them and how long it will take.  I think my lack of complaining about it all and what some people would view as brave or courageous simply comes from having no other choice.  When you know you only have one option, the choice is easy to make.  As with ALS, when the doctor says you have no options, you have no choice but to just keep going the best you can, for as long as you can. You may not feel particularly strong, but that’s how you end up being viewed by others.  When something minor happens, I think we all complain a little too much sometimes.  But when it comes to the big stuff, most of us are stronger than we feel, and braver than we think.

14. Thank God For Shonda Rhimes  

Find something to look forward to, a reason to get out of bed in the morning.  It can be literally anything.  It can be easier to keep yourself going through the hard days if you have something to look forward to, something you want to do or see.  Something you don’t want to miss out on. 

For me, the biggest thing has been my kids. When a doctor told me I had only a few years left to be with my family, I said, no (in my mind).  I didn’t want to miss out on seeing my kids grow up.  I just kept planning and looking forward to our lives like usual, only more so.

But it’s not just the big things that keep you going, it’s the little things too.  Like planning on taking a vacation.  Or maybe something as small as a new coffee frappuccino coming out at Starbucks next month.  Something to actively plan for and look forward to.  

My daughter got me to read one of the Harry Potter books, and that instantly gave me another thing to look forward to.  I couldn’t wait to read the next book in the series, and the next, and the next, until I had read them all.  And then there were the films based on the books to see and to look forward to.  My ALS just had to slow down because I wasn’t going anywhere until I had seen all of the Harry Potter movies!  I saw them all.  That’s when the Powers That Be/God, lead me to Shonda Rhimes.  Also known as the creator of some of the best shows on TV, and you guessed it, another reason for me to hang in there for one more season of, “How To Get Away With Murder “, “Scandal “, and “Grey’s Anatomy”.  I’m not gonna miss out on what happens with Merideth Grey because of ALS!  Ok, I am not saying that all you have to do to keep going when dealing with a serious illness is to find something to look forward to …but, focusing on something besides your illness is a huge piece in the puzzle.  I am looking forward to seeing  Alice Cooper in concert this summer, I don’t want to miss that.  And on and on it goes.  I am just going to keep on keeping on, and finding new things, both big and small, to look forward to for as long as I possibly can.  

13. Forget About It

Forget about it! Said in your best mobster (think Tony Soprano or Mickey Blue Eyes ) voice.  We live in a world where the things you focus on are the things that manifest in your life. Did you ever notice when you try and try to save up money for something you really want, how hard it can be? Your thoughts migrate towards your lack of money. Your focus on your lack of money continues to bring about a shortage of funds.

Have you heard the saying, “The rich get richer and the poor get poorer”. While it’s just a saying, there may be some truth to it. It is, after all, very difficult to think about anything other than your absence of money, when money is what you really need. It is much easier to envision always having enough money when you already possess money. Likewise with your health, and everything else in your life. The more you concentrate on something, the more you receive exactly
what you are concentrating on. So, if you are sick, the more you talk and think about your illness, the more it clings to you. If you no longer want to be struggling with something, forget about what you don’t have, and focus on how great you will feel when you have what you want. I know, that’s easier said than done, especially with health issues. You still have to deal with doctors, tests, treatments and medications probably on a daily basis. so your illness is on your mind often.

My favorite author, Pam Grout, offers a series of simple experiments to help us understand just how the universe works, in her book, E-Squared: Nine Do-It-Yourself Energy Experiments That Prove Your Thoughts Create Your Reality https://www.amazon.com/dp/1401938906/ref=cm_sw_r_cp_api_EHtwzbKFXBYSC

 She does a much better job of explaining things than I could, so I suggest you read her book.  But, the gist of it is that God (or whatever you prefer …Mother Earth, the Great Spirit, etc) is always listening and gives you what you are focused on in life.  So, we need to focus on what we want and forget about what we don’t want, i.e. probably your current situation.  Like I said, she does a much better job of explaining it. But I think she is spot on!  I have done most of her experiments, and have received everything from a bright blue butterfly to a seahorse, to a surprise credit of $24.85, to a write off of a student loan (a total surprise)!  

I don’t have this all figured out, I do, after all, still have ALS.  But, I try not to focus on that, and instead, focus on all the awesomeness in life and expect more amazing things to come my way.

12. Just Do It 

Sometimes, the longer you stay in your house because you don’t feel well, the easier it becomes to never go out.  I don’t think you can really understand that unless you’ve lived with a long term illness.  I remember a life, long ago, when I was always on the go.  Both before and after their were kids to take up my time, I was always busy, probably too busy.  I can remember a time when I owned a computer, but rarely had the time to use it.  My computer and IPhone are now what link me to the world outside my house. 

When you have a serious illness, you may find yourself leaving your house less and less, the longer you are sick.  I was just too tired to go out much at first.  Then everything became so hard, and took so much longer than it used to, it hardly seemed worth the effort required to go anywhere.  Add to that, pain, if it’s below 50 degrees.  Having a comfortable chair at home with warm blankets in the winter, a nice breeze (or air conditioning) in the summertime, all add up to staying home.  A lot.  In the winter, I don’t go anywhere for weeks, sometimes (depending on the weather) months at a time.  When warmer weather arrives, I get out more often.  Sometimes you have to force yourself to go out into the world.  Just do it.  No matter how uncomfortable you may be, physically and mentally, don’t let yourself go all Grey Gardens.  Just do it.  I always feel better after getting out of the house for a bit, even if I don’t really go anywhere, or if my outing doesn’t go smoothly.  I went out one day earlier this year, and practically knocked myself out (I had a little accidental help) hitting my head as I got into the car.  That being said, even with the slight concussion (I’m guessing), I was glad I went out for a few hours.

I remember being out one day, many years ago.  We had eaten dinner at Applebee’s, and were leaving our table, when a man sitting at a nearby table looked at us and said, “Good for you , going out! It might be hard, but you keep going out!”  I have no idea who he was, or why he said that, but he was right.  No matter how hard it is, you have to get out and get a little vitamin D.  Even if you don’t go any further than out the front door.  Just do it.  I guarantee (mostly) you’ll be glad you did.

10. Think Good Thoughts, Always 

It takes no more energy to think a good thought than it does to think a bad, or negative thought.  Yet, those negative thoughts seem to come so much more easily.  When someone cuts you off as you are driving down the road, doesn’t it instantly make you mad?  In a flash, your head fills with four letter words.  It is, however, entirely possible that the person who just cut you off was not just being an ass because they don’t care about anyone else.  Maybe they just found out that their mother was in a horrible accident, and they are rushing to the hospital.  You never know.  Why then, did they give you the finger as they cut you off?  Well, maybe they are an ass, whose mother was just in a horrible accident.  The point is, why not choose the better thought?  Not that their mother being in a wreck is good, but the fact that they maybe kind of had a reason for their actions.  I guarantee you will be happier and have a better day, if you choose to stay positive.  Shouldn’t that be a goal for us everyday, to have a good day?

Have you ever had a day when everything seems to go wrong? You have an appointment, or have to get to work, and maybe you over slept, and you couldn’t find your car keys and traffic was bad, so you were late to your appointment or to work. No matter what the scenario, instead of stressing out over everything that went wrong, try just ignoring it all and consider the idea that everything just went right. Maybe by being slowed down at every turn and causing you to be late, it also meant that you avoided hitting a deer that would have crossed your path if you had been on time. You never know.  So what if you are a few minutes late. I don’t think you would want to make it a habit, but, chill out (see blog post 7) and choose to think about your day in a more positive way.

I’m not always a glass half full kind of person.  Some days, all I have is a ring on the coffee table where my glass used to be.  I think that came from Roseanne Barr, years ago, and I think she was spot on.  But whenever you can, give yourself a break from the negative in your life and consciously choose good thoughts.

8. Always Look On The Bright Side 

If you are living with a disease like ALS, MS, or any other illness which affects your muscles, you may, like me, at some point end up using a wheelchair. You also may not have use of your arms. Sure, it sucks, but why dwell on it? Look on the bright side of life (said in your best Monty Python British accent). 

If you are stuck in a wheelchair you can stroll through the mall shopping for hours without getting tired of walking. And, if your arms are weak, no more clapping required, no matter what event you are attending. Or maybe technically you could clap, but you are just too tired to make the effort. That’s okay, don’t do it. And, no more shaking hands with everyone. Think of all the germs you will avoid!  Don’t worry about explaining  why you aren’t shaking someone’s hand when they offer their hand to greet you,  just smile and let them figure out what to do! I know, it’s a bit rude, but if you are like me, and your  voice is weak, it’s really too hard to explain anyway.

Sometimes your predicament will allow for some really awesome treatment. Like your semi crappy concert tickets may be exchanged for some really awesome front row seats. And, meet and greet tickets may be thrown in for you to meet one of your favorite musicians. Or, upon seeing the disregard shown to you in a wheelchair at a concert, a security guard may make it his duty to keep you close to the stage, and other concert goers far from you and whoever you are with. A certain Mr. Rick Springfield may get up close to you, even standing on the arms of your wheelchair as he sings! But, I digress. 

The point is, remember to see the good and not just the bad in what you are going through. Always look on the bright side of life, and don’t forget the Monty Python British  accent.

2. Get Some Zzz’s

Sleep is sometimes hard to come by when you have a serious illness, or even when you don’t. Not getting enough rest can lead to all sorts of new and unwanted problems on top of what you are already dealing with. I am all for alternative medicine, and by that I mean not medication, but herbs or vitamins, aromatherapy, etc… But life is short. If you have a serious illness, chances are, you already have way too many things on your plate.  Sometimes I think it’s faster and easier to just get a prescription. Whether it’s pain that’s keeping you awake at night, and you need a pain pill, or just the inability to sleep and you need a sleeping pill, talk to your doctor and get some rest. I personally take both. But this is a blog , and I am not a doctor. I don’t even play one on TV. Although, I have met and talked with Rick Springfield several times, and he played a neurosurgeon on General Hospital for years…so that should count for something, right? Dr Noah Drake

I take the lowest dosage of the sleeping pill, Ambien, and I cut them in half. I end up taking such a small dose, by the time I cut that tiny pill in half, I sometimes wonder if it really helps that much, or if I just think it does. So when my husband found a half of an Ambien on the floor the other night, just after I had taken my evenings pills, I wondered if and when I may have missed a dose. I was pretty sure I had taken one that night, mixed in with a couple of other small pills. I have developed a habit of checking which pills I am given before I swallow them, by feeling them with my tongue. When you can’t pick up a pill yourself and rely on someone else to do it for you, if they make a mistake you will be wishing you had double checked it beforehand.  I can identify probably close to twenty pills just by the way they feel in my mouth. That little trick has kept me from taking the wrong pill more than a few times over the years. I started checking them years ago, after I had asked my daughter to bring me an Imodium.  Not really paying much attention to what she brought me, I took it and soon found out I had actually taken a Tylenol PM. Two pills that were packaged the same way and looked similar, but believe me, if you need an Imodium, you do NOT want a Tylenol PM! 

Back to the Ambien… I slept fine that night. Thinking that I must have missed a dose at some point but hadn’t had any problems sleeping, I decided to skip the Ambien the next night. Around 3:30 a.m., I began to rethink my decision. By 4:30 a.m., I had decided that I didn’t care if I took a half of a sleeping pill every night for the rest of my life. I have too much else going on to have to worry about not sleeping.  So, I took my half a pill and got my Zzz’s.

1. ALS and Zombism…Pretty Much the Same

In the Netflix series, Santa Clarita Diet, ( https://www.youtube.com/watch?v=xjRnbOgoAUQ ) Joel and Sheila are two happily married realtors going about their business when one day Sheila gets sick. Very, very sick. I mean, throwing up sort of sick. A hilarious amount of throwing up. Long story short, Sheila is a zombie. She and her husband and daughter go on with their lives trying to remain as normal as possible, all the while becoming less and less normal. Watching this hysterical show made me realize how similar my life with ALS was to Sheila’s life as a zombie. Like Sheila suddenly becoming a zombie with very few symptoms beforehand, I also was just busy living my life when a few non specific symptoms led to an ALS diagnosis. Suddenly having ALS, as with becoming a zombie, just happened and no one knows why. Maybe a virus? There are plenty of theories out there, but no one knows for sure how or why it happens. Just like with ALS,.there is no cure for being a zombie With both ALS and life as a zombie, you go on living your life as normally as possible until your body stops working. With ALS, body parts give out. When you are a zombie, body parts fall off. With both “diseases “, the things you are able to eat change, although for very different reasons. With both, you may notice a change in your personality, again, very different reasons. With both ALS and zombism, your life and the lives of your family are forever changed. The good news is that, like Sheila, I’ve found that I can be happy in spite of living with ALS… or in Sheila’s case, zombism. We both take things in stride and just go on with our lives. I might suddenly notice one day that my little toe will no longer move or help my foot to bear weight, and Sheila (spoiler alert) might  suddenly find that her little toe is missing. But, what the heck, we still have four more on that foot, right? We shrug it off and just keep going! Zombies and people with ALS, we never give up!

Incurably Happy Life

I was diagnosed at 31 years old with ALS . Otherwise known as Lou  Gehrig’s disease . Remember all those buckets of cold ice water everyone was dumping on their heads a few years ago? Yea, that was , at least in part, for me. It unfortunately has not yet led to our miracle cure, but that’s okay. I have found out that I can be just as happy living without muscles as I can with them! Okay, maybe not “just” as happy , but pretty darn close. In case you didn’t know, that’s what ALS basically means…your muscles slowly, or quickly, quit working. It truly sucks.

I was diagnosed back in 1998 , so I have been doing this awhile. People who are newly diagnosed always ask us old timers what our secret is to surviving past the general 2-5 years prediction so many doctors hand out. So I thought I would use this blog to help in anyway I could to share what I have figured out over the years . Or, at the very least, give you a laugh and a few minutes to forget about your problems.

Warning:

I was not an English major. Ignore my grammar mistakes and typos..I am typing this with a switch and my eyes! I also went to school way back when our school first got computers, so I am self taught and don’t know much about setting up websites, so this is a work in progress. Hope you enjoy!