30 Things About My Life with MS

I was referred to a site called butyoudontlooksick.com and I saw this article for Invisible Illness Week and since World MS Day was May 28th, I decided to do my own version of 30 Questions:

1. The illness I live with is: Multiple Sclerosis and all its friends. Fibromyalgia, chronic migraines, and cold urticaria. 

2. I was diagnosed with it in the year: I was diagnosed in 2014 after years of testing. 

3. But I had symptoms since: If I look back, I’ve been having symptoms for 10-15 years now. 
4. The biggest adjustment I’ve had to make is: Taking a break and learning to say no/ask for help.

5. Most people assume: that I have just hurt my foot or some other body part and it will heal and then I’ll be “all better.”

6. The hardest part about mornings are: Pulling myself out of bed. I spend about 15 minutes just trying to move to get my appendages to support my weight or pull me out of bed. So easy to just lay there. 

7. My favorite medical TV show is: I don’t really have one. I tend to gravitate more to the fantasy/SciFi genre. If I watch anything with a “medical” piece, it’s CSI.

8. A gadget I couldn’t live without is: My folding cane. It helps me walk, reach things…and I can fold it up and put it in my bag when I don’t need it. I try not to rely on it too much. I have a wheeled/seat walker that I use for long outings, but I really couldn’t live without my phone/tablet. Keeps me connected and independent. 

9. The hardest part about nights are: Trying to get comfortable. Either too hot, too cold, or the most comfy position starts to hurt, insomnia. 

10. Each day I take 19 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried whatever has come my way. I figure why not? Not everything works for everyone, but then what doesn’t work for one, may work for someone else. 

12. If I had to choose between an invisible illness or visible I would choose: I’d stick with this invisible one. There are days when I wish I had something I didn’t have to explain, but then I have a pretty big mouth and can advocate and discuss. 

13. Regarding working and career: I enjoy staying busy, but commuting to work every day is difficult. I continue because I need the health care and the paycheck, but someday, I’ll be able to retire and stay closer to home and do something I really want to do. 

14. People would be surprised to know: that I fight with depression all the time. It’s a never ending battle keeping a hold on the spiral and staying moderately happy. Some days, my happy exterior is all done with smoke and mirrors. 

15. The hardest thing to accept about my new reality has been: Not being supermom. I have to ask for help and accept that there are things I cannot do anymore and days when I can be great one second and horrid the next. 

16. Something I never thought I could do with my illness that I did was: Fly in a zeppelin. Awesome fun. 

17. The commercials about my illness: What commercials? There aren’t many for Multiple Sclerosis. 

18. Something I really miss doing since I was diagnosed is: reading in the car and spending the day outside. 

19. It was really hard to have to give up: doing things on my own. I loved being independent. Now, it is a rare moment that I can do things on my own. 

20. A new hobby I have taken up since my diagnosis is: Photography. My diagnosis made me choose to do things now.  I love photography, I will be taking classes on it to learn everything my camera can do, but I enjoy capturing everyday beauty and the odd things here and there. 

21. If I could have one day of feeling normal again I would: Go ride roller coasters all by myself. 

22. My illness has taught me: to slow down and take things in stride. It has taught me that there is no shame in asking for help. 

23. Want to know a secret? One thing people say that gets under my skin is: having to explain what MS is. I get a lot of blank stares, weird responses, etc., it gets very tiring having to explain it all the time. Or, finding someone that “knows” what it is but getting “Oh, I know someone (my aunt, dogtrainer, etc.) that has MS, they cured it with xyz cure (gargling with magma, chewing twigs, whatever.) You should try that.”

24. But I love it when people: try to understand and step back and let me live my life. If I need help, I’ll ask, but I love it when people enjoy things with me instead of keeping me from it or hovering. 

25. My favorite motto, scripture, quote that gets me through tough times is: Hope. I adore “The only thing stronger than fear is Hope.” I also love Dr. Seuss’s – “Say what you mean and mean what you say because those that matter don’t mind and those that mind don’t matter.”

26. When someone is diagnosed I’d like to tell them: Hang tough! It’s your life, live it your way. 

27. Something that has surprised me about living with an illness is:  The amount of things I can still do. Not to mention, all the information and learning out there. Even in the last couple years, advancements have been leaps and bounds.

28. The nicest thing someone did for me when I wasn’t feeling well was: be genuinely kind. Let me nap with no feelings of guilt so I could get back to doing. 

29. I’m involved with Invisible Illness Week because: It’s only invisible if we keep it that way. Bringing it out into the sunlight will help advance our research and hopefully end the stigmas and bring a cure. 

30. The fact that you read this list makes me feel: vulnerable but I’ll always answer truthfully about things asked. Otherwise, how else do we learn. 

MS Impacts Us All

Please take a few moments to watch this video and feel free to share!!

Fight the fights worth fighting!!!

I know my writings have been hit or miss in the past, but I’m trying. My memory isn’t what it used to be. Too many things to do and not enough time. The kids think I play games to waste time, they don’t understand that it is how I keep my brain active. Hidden Item games are amazing for keeping the memory going and so are puzzle games.

Anyway, I had a thought today. When asked for the billionth time about how I cope with having MS, I reply that I just keep putting one foot in front of the other. You know, like the Abominable Snowman and that song from Rudolph the Red-Nosed Reindeer. “Just one foot in front of the other, and soon you’ll be walking out the door.” You know you remember that movie. Bombie is one of my favorite characters and now he is my inspiration on most days. Just getting out of bed is a victory. People don’t get it.

How is it that you are in so much pain and so sick but you keep working? Uhm, duh. I’m broke. I need the health care benefits and the paycheck. Sure, I could quit my job, forfeit my pension, and live off of disability for the rest of my life, but I can’t afford to live like that. I want to live. I want my life. To me, that is giving up. Don’t get me wrong, for some, it’s the only option. My husband is physically disabled and is on disability, but it was a fight, a three year fight, to get him on it. Without it, doom. It helps. He worked a lot of years to earn the right to have that available to him. Thankfully, his working paid for his disability payments and gives him access to Medicare. Thank the heavens. Without that health care, we’d be deeper in medical bills than we already are.

This situation and conversation with a coworker is what triggered my thought today. Remember the movie, “The American President,” with Michael Douglas and Annette Bening? Great movie. One of my favorites. There is a moment in that movie, where Michael Douglas’ character is having a heated discussion with his Chief of Staff, A.J. MacInerny played by Martin Sheen and discussing the situation at hand. A.J. has the best line in this movie while discussing fights that can be won and he says, “You fight the fights that need fighting.” Awesome line. Thank you, Mr. Aaron Sorkin.

I want a shirt that says that on the back and Finding a cure for MS on the front. What do you think?

I’m tired of getting the “But you don’t look sick,” comments. I’m just tired of the charming people that lend their opinions to all these new fangled diets and trends that they seem to think will cure my MS. I say thank you to them for caring about me, but seriously, don’t you think I’ve tried that stuff? Those things aren’t for everyone, every body is different and need different things. Mine happens to need more Vitamin D. For some reason my system seems to have a hatred for the stuff and refuses to process it naturally. So difficult. LoL.

However, I have decided to try and enjoy life a bit more. Try to live while I can. I’m starting a bucket list. I’m trying to chill but I’m not fragile. Not yet. I can still do some things for myself. Like two other favorite quotes, “MS is a bitch, but I’m not MS’ bitch,” and “I have MS, but it doesn’t have me.”

Fight the fights worth fighting, people! 

That’s how we get things done!

Peace!

Okay, Okay, I know....

So, yes, I have Multiple Sclerosis. Meh.

I thought I'd be ready for the actual diagnosis, but I was wrong. It hit like a ton of bricks. Mostly because I have to explain it to a lot of people. They have no idea what it is. Sigh.

I'm learning to live with it though. I have a great doctor. A great support system and I am learning to take it easy. Okay, two out of three of those are true.

It's hard stopping life and rejudging it for what you can and cannot do. But I'm trying.

Book Review: Wool by Hugh Howey

In the immortal words of Richard O’Brian in his lyrics for“Planet, Schmanet, Janet,” “A mental mind fuck can be nice.”

To begin with, this is a rather melancholy dystopian story. You follow the main character, Holston, through his reasoning for questioning his life. It’s well written and a solid read. The story grabs you and doesn’t want to let you go.

Holston is going through the remorse and sadness of losing his wife. He questions his life, his home, his government, just as anyone would. The problem is this story is post-apocalyptic and his entire society is holed up in a refurbished missile silo.

Outside is horrid. Air filled with harmful gases and skin torturing winds; or is it?

There is a truth hidden in this society. Those in charge work hard to maintain order and keep the truth hidden. When someone questions the truth, they are allowed to do as they please and go outside. The trade-off is that the person who desires to leave, must take out the cleaner and wool and clean the cameras for the rest of the people staying behind.

Holston doesn’t realize the truth until he goes outside himself and removes his helmet.

I sat for a bit and had to think about this story. It took me a little bit to really wrap my head around the conclusion. I was going to write that I felt a bit cheated in the story until I found out that this is only book one and there is a Wool Omnibus with books 1-5 in it. There is also a prequel titled “First Shift – Legacy” which is book 6 in the series. I have been told that although book 6 is a prequel, you really should read the omnibus first then the prequel so you truly understand the story.

If the other 5 books are as creative as the first, I’m hooked. Book 1 is currently free on Amazon for Kindle but I would recommend the Omnibus for $5.99. As soon as my pennies add up and my TBR pile decreases a bit, I’ll be reading them and sharing more info here.

I just found out that a Book 7 has been released as of November 12, 2012 - Totally on my TBR list now. 

Amazon Kindle Book: Wool by Hugh Howey

Amazon Kindle Book: Wool Omnibus Books 1-5

Amazon Kindle Book: First Shift (Silo Series Book 6)

Woot!! And book 7 for your reading pleasure:

Amazon Kindle Book: Second Shift (Silo Series Book 7)

Is Laughter The Best Medicine? | Yahoo! Health

As someone that enjoys laughing at herself and stupid jokes, I thought I'd share this article. Enjoy!!!

Many laughs for you!

Is Laughter The Best Medicine? | Yahoo! Health

Book Review: 50 Shades of Grey (or “The story of how I knew I didn’t care for the Twilight books/movies at all so why did I think I would enjoy this”)

Okay, I’ll admit this right off….I’m an idiot.

I didn’t know that these books (there are three) were basically Twilight Fan Fiction with the names of the characters changed. Ah, the 20/20 vision of hindsight. People were calling it “Mommy Porn” and that intrigued me a bit. I mean I like a little naughty now and then so why not. And there were lots of people swooning over it. (Should have been my first clue but I’m not that quick sometimes.)

Dear heavens above, what a freaking waste of my time, money, and life.

I am going to admit, here and now, in writing, that I could NOT finish the first book. Nope. Couldn’t do it. I got about a third of the way in and all I wanted to do was smack the crap out of Ana and chain Mr. Gray up in a psychiatrist’s office for a year or two. Good grief. You would be hard pressed to find two more dysfunctional people.

I wanted to scream at them. I thought there for a while there was blood coming out of my eyes while I tried to keep them focused on the page to read this crap.

Then one night, I was sitting in my livingroom, with two of my daughters and we got talking about books and 50 Shades came up. I pounced. I told them that I couldn’t figure out why, but the book was just rubbing me the wrong way, I was having the hardest time reading it. I thought it was drivel and painful to read. You can guess what happened next. My girls started busting up and laughing at me. (eyeroll)  I tried to put on my “Mom Face” and glare at them while asking why there were laughing at their mom (this time). Sigh. My eldest reminded me that I hated Twilight. I said that I did. She then told me that, of course, I’d hate 50 Shades because it was just Twilight fan fiction that the author had changed the names in. She said that Ana was Bella and Gray was Edward and Jose was Jacob. I almost cried. Come on, seriously? Ugh.

So, I did what any self respecting mother would do, I laughed with them. Sigh. Then I backed out of the book on my Kindle and removed the books off of her. What a waste of almost $30. Lesson learned.

Now, there are a lot of people out there that enjoyed Twilight and the 50 Shades series and I say “hurrah” to you. I am happy that you do. Everyone should have books/movies that delight them. I have nothing bad to say to those people. Just please, and yes, I am begging here, please do NOT talk about them with me. They make my head hurt.