In Honor of MLK Day

My Best Advice on Getting the Best Quality of Life with a Chronic Illness

Long story short, this is how I’ve stayed sane, healthy, and am coping with copious amounts of pain.

1.First I’ve memorized this poem/saying and say it to myself a hundred times a day:

“God grant me the serenity to accept the thing I cannot change, the courage to change the things I can and the wisdom to know the difference.”

2. I stretch every single day, no matter what.  Whether you feel like crap, or your body is going to break; or you have twenty places to be at one time. First things first. You stop, and get your stretch on. Stretching for people with Dysautonomia, MS, Parkinson’s, or people who just get leg cramps is extremely important. I can tell a huge difference between my days I stretch and those I don’t. I stretch consistently throughout the day. In the morning when I first wake up I go through each position. Then throughout the day when I get a moment to myself I do quick little stretches as much as possible.  My main stretches all come from this fabulous book called (bellow)

Stretching and Toning by Melissa Cosby

I love it because it’s spiral so it lays flat. It has instructions for several fitness levels so if my legs just won’t move like they should one day I can revert back to beginners and on my good days I can go to Advanced. I’m forgetful and ADD so I love that it goes into detail for each stretch but then in the back there’s a page that sums them all up. This way you can go back and make sure you haven’t forgotten how to do the stretches correctly and make sure you haven’t formed bad habits.

3.Exercise daily, no matter what. I see those eyes rolling. I know this is a hard one but here’s the thing. Even people with the most limited movements can find an exercise for them. For years I was told not to exercise because I would pass out. Then I was told to do it for three min at a time. And here’s what I’ve found. There’s this hilarious old lady that comes on PBS every morning at 9:00. She sits in her chair and exercises. Sure you feel dumber then a playboy playmate at a Mensa conference but it does the trick. Also I have this awesome machine. It’s like a bike but you can stay on your couch and pedal, and then you can lift it up on your table and work on your arms. It’s fantastic.

 

I found mine at Walmart.com

4. I’m now a yogi. I do Yin Yoga almost daily. I should do it every day several times a day, but I don’t.  Don’t give me that look! I know it may sound crazy but if you really give into it and your body can heal itself between bad days. It’s amazing! Plus for the hours right after each session you’ll be standing up straighter then the Eiffel tower! Here are my favorite videos:

Yes I know they seem stoned...but doesn't that make it more fun?!

5. Learn to meditate. There are hundreds of methods out there, find one that’s right for you. I have a few favorites look HERE

6. On your bad days get out of bed! Even if you can’t move, your joints are killing you, and each vertebra of your spine screams out in a pop as you move upward. You got to continue to move your location. For instance, in the morning, move from your bed, to the couch. If you need to keep your favorite pillow and blanket, but just make sure you get out of bed. Then a few hours later move from the upstairs tv room, to the family room. It’s amazing how much better you’ll feel on those bad days if you push yourself to change your surroundings even if it is just from one room to another.

7. Try to get your mind off your pain while excersizing and getting ready. The reason why it is so hard to be motivated in the morning is you are dreading that pain. So instead of watching your favorite tv show while on your butt at night. TVo it or watch it on hulu as you are getting ready for the day and doing your stretches. I always have whatever show I love on while I stretch and I watch my horrible guilty pleasure, TMZ (you can get the episodes on their website) while I do my hair/makeup/and get dressed. It distracts me from how much it hurts to do those tasks.

8. Find your outlet. You have to find things you can do every day besides watching tv, no matter how you are feeling. Make sure these are things you love to do and make you happy. Here are some of mine:

• My music. It’s amazing how much music can uplift you and get you motivated. On days I don’t think I can do my stretches or go on a walk my music usually does the trick to at least get me motivated to walk to the mailbox and back!
• My “Happy journal.” I keep a journal of things that makes me happy. It’s an 8x8 scrapbook of random things that make me smile.  Scrap-booking and just looking at my scrapbooks can put me in a great place. If you don’t have the money or movement in your hands to scrapbook an easier and cheaper way to go is Costco’s online photo books. There are other websites that do great scrapbook pages but Costco’s photo books and scrap-booking pages come out to costing less than if you were to print out each of the pictures individually.
• Then I keep a normal everyday journal but I do more doodling then writing.
•  I send postcards to my friends. Letter writing is such an important lost art I think. So I write letters and postcards. It’s also a good practice to keep you grateful. Writing thank you notes and love notes to your friends and family really helps you focus on why you should keep fighting through the pain.
• On my good days I do photography so that on my bad days I can sit in bed or on the couch and have fun photoshopping them.
• I’m not a big fan of facebook, but I’m obsessed with this website called polyvore.com. It’s so fun! Basically you make little fashion sets. Sounds stupid I know but it’s my guilty pleasure.
• Some other Ideas are reading, blogging, painting, crochet or needle point, puzzles, brainteasers, soduku, playing card/dice/domino games with family or friends, cook, etc.

9. Get out and volunteer. As of right now I can’t work. My days are too sporadic and unpredictable so there’s no way I can hold a steady job. So I volunteer at a Women’s shelter a couple days a week for a few hours, and thankfully they are flexible when I have bad days. It’s perfect because for the most part I sit, but I’m still challenged to get up and help out the girls. Some days I’m on my feet the whole time. It’s hard but it’s good to push myself. Everyone there knows of my limits so if I say “that’s too much” it’s no problem. And since it’s volunteer work they are just grateful I’m there no matter what. I’m sure retirement homes, shelters, schools, and programs for persons with disabilities would be more than happy to have you.

10. If you know you can find a job that fits with your body and abilities go for it.Look for jobs you normally wouldn't, telephone operator, florist, receptionist. Even if you are worried that they will be put off by your illness. Even if they are at least you tried, but I think you would be surprised by how understanding some employers can be. 

11. My next piece of advice may turn you off but it’s really important you take it. Get yourself a councilor/therapist/shrink!  I will go into the importance of one in a later post, but for now look for  someone who specializes in chronic illness or disease. My therapist isn’t there just to listen to my problems, but teaches me ways  and gives ideas to improve on my quality of life. It is also very, very important that you have someone unbiased who you can really confide in when you have an illness, because they understand all 360 degrees of what it’s like to have an illness, be a caregiver to someone who has an illness and be a provider or physician to someone with an illness.  It may take trying out a couple of specialists to find one who fits your personality and what you are looking for but once you find it they can really be a great asset in your life.

If you can’t tell, I love my therapist She’s fun and sassy and reminds me of a high school guidance counselor. Her purpose is to make me realize if my health isn’t going to change then I have to. She gives me ideas on how to improve my life. I’ll let you in on a secret; most of the ideas on this list were hers.

Which leads to my next word of advice...

12. Read this book:

I have read my share of self-help books, to spiritual books, trying to find the best way to edify myself. Other than the Holy Scriptures I can one hundred percent say, for me this is the best book for self-edification.

It’s geared for people with high anxiety, but it works with people with illness too. For instance it teaches you to take those bad thoughts you have about yourself and turn them from a feeling into an object that you can analyze. In doing this you realize what a silly thought, why am I thinking that. And then you can take your forefinger and thumb and flick them away. I now view my pain this way. I view it as an object instead of a feeling and though it’s not so easy to flick it away, pain doesn’t have the power over me that it used to.

It also teaches you meditation. Something I have been practicing for a while and found extremely important in my quality of life. There are some odd meditation exercises in here but just do the ones you find are good for you.  I will also do a post on my favorite forms of meditation, so look for that.

I’ll be honest It’s a heavy read, and you’ll want to fish through it fast. The first five or so chapters are okay to scan through just as long as you feel like you are getting a grasp of what he’s saying because he is laying a foundation, but it’s really important to take your time on the rest of the book.

Don’t be afraid to redesign the little assignments he gives you to fit your situation.

13. Count and organize your spoons. AKA Energy I will go in a later post, but basically don’t over do it. If you feel good one day don’t freak out and run a marathon. Otherwise you’ll crash the rest of the week. Plan out your week and save energy for tomorrow.

14. Last but not least. Confide in a friend. Don’t be ashamed to ask for help.

I live with my parents and they know what I go through because they see it firsthand every day. However my brother, his family and my extended family not to mention my friends in the past were kept in the dark.

It’s important to open up to them so they know the details of what you are going through. I hadn't really told my grandparents exactly how bad things had gotten, and they got a rude awakening when I was left needing their assistance to help me to the bathroom. These two were in their late seventies and had to basically carry me to the bathroom because I couldn't move the right side of my body.  I’ll spare you the rest of the details but it’s one of my more awful memories. If I had been honest with them and had a conversation on how they could help me I don’t think it would have really traumatized me as much.

I usually don’t talk about my illness with my friends much either, it just doesn't come up. I won’t let it. Even if I’m on the couch slumped over in pain we talk about anything else.

However, I've learned I need to give up my pride every now and then and talk about it. Usually we laugh about the silly things that happen because I can’t make it to the bathroom in time or fall over because my legs give out or how I threw up on my dad in the Mexican restaurant parking lot. But we laugh about it because that’s how we have decided to view it. Not as sad events, but we force ourselves to see the humor in it.  So instead of, “oh (frown) It’s so sad you peed your pants, and then your dog peed on you.”  (Tear.) It’s “Oh my gosh!  That is so freaking funny I’m going to pee my pants right now thinking about it!” (Hyperventilating)

Here We Go Again

After a long hiatus I’m back. The main reason why I stopped writing was, well, when I originally started this blog I wanted to write because all the other blogs on Dysautonomia were so depressing.  Each entry from all my favorite blogettes were tear jerkers. So I wanted mine to be more uplifting and positive.

After my wonderful neurologist left my area and went to Columbia University I went through a deep depression because my new doctor, well to put it nicely he’s like an old crow trying to keep all his eggs warm he hasn't realized they've already hatched.

I wasn't happy and I sure as hell wasn't in a place where I could blog about what was going on in my life without it coming across as slightly “Hope is emo.”

( If you don’t get the reference youtube it.) Priceless.  Oh how I miss 2007.

I digress, after a long journey, months of introspection with help of yoga, a reality check, and a kick ass therapist.  I’m back with what I've learned.

When nothing is going to change, no miracle is going to take place you can’t just say you accept it; you must mean it. I used to think I did mean it, but I didn't. I was still waiting for a miracle drug or my symptoms to vanish. And after five years they didn't so I had to figure something out.

I’m not going to say I figured it all out, but hopefully the following posts of what I've learned will somehow help you in your life too!

If not, I hope I’ve at least made you laugh.

Advice for Loved Ones of a Major Health Challenge or Change

My grandfather had heart surgery this week. While waiting in the waiting room we ran into some friends from my childhood. It was so strange, but totally meant to be. They were there because a mysterious ailment made their mothers heart stop. She was rushed to open heart surgery and then rushed to the best hospital in the state for more surgeries. After talking with my friend for a little while I decided I should write a  few things to help others experiencing the same situation.

1. Be as patient as you possibly can.
2. Don’t be afraid of prayer, whether or not you believe in God, circumstances like this a prayer could never hurt.
3.  Always make sure while talking to the doctors there are at least two of you. One person cannot pick up everything that is said. Bring a pen and pencil and a buddy to all doctor consultations about your loved one.
4.  Obey the visitor’s rules. It may get really frustrating at times because you want to see your loved one at certain times or you don’t want to leave them. But too many people in the room or staying past curfew or going in when you have a cold could seriously complicate the progression of your loved ones recovery.
5.  It’s common for people who have had big surgeries like brain surgery or open heart surgery to go through a sort of hard core depression afterward. Help them realize this is normal, bring the light back into their life and be a good support for them to lean on during this hard time, but don't get frustrated by their behavior.
6.  Their life may never be the same, tell them it shouldn't be. My biggest obstacle and sometimes still is, is remembering how much I used to be able to do and how little I can do now. It’s the most frustrating part of the journey. I have realized I only have so much energy every week and if I over do it one day I’m out the rest of the week. This is important for you and your loved one to realize. They will want to get back to normal, but it may take time, for me it has taken years and I’m still not even close to what I used to be. So this is my new normal. I’ve accepted it. But it took a lot of time a lot of tears and a few broken plates to realize this.
7.  Recovery may take longer than expected. Your timeline and the body’s timeline can be two totally different things. Push yourself but don’t get frustrated if you or your loved one hasn’t accomplished what you think they should by your standards. Your doctor will step in and let you know if something is wrong. Otherwise enjoy the journey and don’t get mad at yourself. Anger doesn’t help the bodies progression
8. Their personality may totally change. It is not uncommon when something like this happens your personality takes a huge remodeling. I am the first to admit who I am now, how I handle situations, and my views on life are totally different than they were before I first got sick. When you have a loved one who is going through this change it may be incredibly confusing and frustrating because they are not who you fell in love with, or grew up with, or love. But guess what, they are. We all change throughout our life’s but events like this just make the change quicken. I’m reminded a rock slide that happened in Zion National forest years ago. Before the slide it was well established in the scientific community that rock formations and canyons take hundreds of years to be made. But after this unique rockslide the entire areas look changed. The slide made unique formations broke an arch into a hodo, and a mountainous area into a canyon.  All these things that were previously thought to take years to happen took literally a few min. Your loved ones personality may be this drastic, but under everything, they are the same person, so embrace the new them. If they have traits that are now considered dangerous behaviors get them help, otherwise try to accept the new them.
9.  Let them know you are there but give them space. When your life changes like this, a new self-awareness occurs. Your loved one may need that alone time in the hospital and during recovery to help them find themselves again. Don’t take their dismissals personally. Their life has changed, let them find stable ground again. 

1. 
   

Stop being a whiner and blaming God or Bad Luck...YOU CAN DO THIS!

I can control my own happiness. I may not be able to control my illness, but I can control how I let the pain that travels through my body controls me.

On days I feel hopeless, I’m not afraid to cry out in prayer; and when I calm down and refuse to let my body be in control I feel at peace. Something I know that comes from God.

Just remember don’t be the man in the story who falls off his boat and is being carried down the violent river. He yells out to God to help save him. Right after he cries out a log comes flowing past him and he is able to get up on it to safety and he says. “Oh never mind God, I found a log to save me.”

You may think God gave you your trials because he’s punishing you or testing you. I honestly think God had nothing to do with giving me my illness, genetics and sience did. However God hasn't cured my illness to save me from myself. I needed to learn patience; I needed to learn to lean on Him and my family and friends. I was too independent before. I was going to save the world on my own and didn’t need anyone’s help.

How foolish.

I was missing so much. This illness has taught me so much, strengthened so many relationships, and showed me who my real friends are. It’s taught me what is really important and not to stress over stupid little things.

Believe it or not, I dare say my life is better for it.

I wasn’t given this illness because I needed to be punished, but rather to be saved from myself. I needed to realize what was really important, and what the real purpose of life is.

Not to mention, overcoming pain is much more rewarding then being patted on the back for a great presentation at work, an A in the hardest class at school, or even a raise.

Look how tough I really am world.

I’m a freakin' animal!

Today I feel Like a Ninja...

Today I feel like a NINJA.

"Why" you ask?

I dunno...I just wanna kick some butt!

...I'm thinkin this may be why:

http://www.youtube.com/watch?v=83EEIQFNedc&feature=related

Getting back into the game...

Let’s do a little catch up!

So they took me off the carbadopa levodopa. (spelling completely) worked fabulously but made me sleep 20 hours a day. Literally 15-20 hours a day sleep.

And I ain’t no sleeping beauty, so heaven knows I was excited to get off it. 

Now I’m on Baclofen (also spelled wrong I’m sure) it’s mainly used for people with MS from what I hear but it’s used with MANY types of patients. A couple of my old students were on Baclofen pumps…if ya would of told me five years ago I’d have the same doctors and meds as my students… I probably would have thrown up.

HOWEVER I LOVE my baclofen. I’m a little worried because according to my doc I’m on the highest dosage and if my body gets used to it I may have to get a pump. Oi!

Which leads me to TERRIBLE news…my sweet, perfect, smartest damn doctor there is, left me…she moved across the country to keep reaching her academic and researching dreams.

God bless her, but I’m devastated.

I’m in good hands, with my new doc, although he’s old. I mean, so old he walked out of my room and started walking down the hall and a nurse came over to him and sweetly asked if he was confuse and told him his next patient was the other way.

“I’m not confused! I’m just going to the bathroom for cryin out loud! Eayeh!”

This would worry me but everyone I talk to says he’s a genius that has only gotten better with age. My gastro doc almost swooned when I told him. The old guy, Dr. G. was a mentor during the gastro’s residency. He told me, “Watch him when he thinks…he’ll close his eyes and do a light blinking thing. Then when he’s got the answer he’ll lift up his left hand slightly and his pointer finger towards the ceiling.” Sure enough that’s exactly what Dr G. did.

The baclofen has changed my life, I’m not even on the same playing field as I was before. Before, it was like everyone was in the football game and I was still siting in my car in the parking lot. Now I’m hangin out sitting on the bench by the sidelines with my compressions stockings; praying I’ll be able to put my cleats on soon!

I'll leave ya with some of my FAV video's...at least my fav this week:

and now lets let miss B take us to our finale...

Exercise, the Poor Man's Plastic Surgery...

I am so excited! The day I have been waiting for has come! Since 2008 I have been put on extreme exercise restraint via the docs and about a year ago they took away all things heart pounding.

This sent me into a deep depression because I have probably an unhealthy obsession with Turbo Jam and Tae Bo.

 But today I was given the go ahead for seven and a half min a day! Yup that’s right folks, this powerhouse gets to exercise two and a half min three times a day with this little machine…

 

I’m only allowed to use my arms; go about the distance a snail travels in an hour at the speed of a turtle but at least it’s something right?

At physical therapy I tried to convince them to let me do it longer but theys strapped a BP cuff on me and of course after a literally one and a half mins of turning my statolic dropped thirty points...so I lost that fight...

I also ordered my wheelchair finally a couple weeks ago so that now I will be able to go out twice as often. It’s been so annoying because although I hate shopping for some reason Love grocery shopping and haven’t been able to in I don’t know how long so now I can just hop in my little zebra striped glow in the dark chair and go! They say it takes 90 to process and make the chair so I’m dying on the wait.

And lastly can I just say how thankful I am for my momma?!? She is so freakin fantastic, and my dad has been such an angel. They get it. I could not go on without them. I’m so proud to be their daughter, so lucky. They are the best examples as human beings I have ever met. Well besides Monson and Eyring.

I’m so dang blessed!

Wyatt Earp, Hero or Outlaw?

Yesterday I felt like killing my miniature American Eskimo dog. We got him because some genius told us he was a great seizure and police dog, because they are so good with scents and people. At the time we got him I was absolutely elated because I wanted a puppy so bad. Someone to be with me when I was lonely and someone who can help alert my family when I have an event.
Someone said our little buddy would be able to do all this.

Well, someone must of been on crack, because I don't think the poor little guy has it in his genetics.

We named him Wyatt after Wyatt Earp. If names really are self fulfilling prophecy's then that probably wasn't the smartest thing to do.

On to the story- Last night I went upstairs to get a midnight snack. Coming back down the stairs I slipped on the last steps. I don't know if my leg gave out or what but I was on the ground and my lower limbs weren't working and I had partial control over my top.

I called out to my parents several times, over and over again. Nothing. So I thought to myself....Self, this is why you have Wyatt, why don't you get him to go tell mom and dad that Timmy is in the well. This was his time to prove himself.

I was able to open the door to the basement to let him out, he ran through it, sniffed me a couple of times then ran to the top of the stairs. I was so excited! Yes! He's going to help me.

 (when he was one month old)

He sniffed around the top of the stairs and went into the living room for a second then went back to the top of the stairs and sat again. He turned his head to the side and gave me a "whatcha doin" look.

I then said "Go get momma Wyatt. Go get momma!"

He didn't budge.

"Go get momma baby, please Wyatt, go get momma." I at this point was in a lot of pain and had a crackle to my voice.

He stood up and turned to go to their door, then turned around and came barreling back down the stairs and started licking my face.

He was drinking up my tears and sniffing my entire body. I'm sure I was setting off a scent that was new to him so he felt the need to explore it. Me being the idiot thinking he could understand me began expelling to him that when I smell like this you need to go get mom.

I then convulsed and I hit my head on the banisters railing. My arm twisted and my muscles started spasming so I yelped in pain and then commanded Wyatt again to go find my mom. Instead he took this a sign of attack.

At first he started nipping at my hands and nudging his nose under my arms and legs. This is usually what he does when he wants us to play with him, but after I wouldn't play and my convulsions started getting more sever he started biting and pulling on my hair. I started screaming on the top of my lungs for my parents and he kept nipping, and nudging and tugging. All of a sudden for who knows why he got up on the stair right above my head and started clawing at my hair like he was burring something. I continued screaming and he started biting at my nose.

At this point I couldn't move, I couldn't defend myself so I just had to take it. I think he thought my screaming was some sort of attack so he went bizurk.

(a couple of weeks ago in his santa suit, age five months)

It seemed like forever by the time my parents finally came. I'm sure the whole deal start to finish was about five to ten min but it felt like thirty.

I have a scratch on my forehead down to my nose and a few bruises and I refused to talk to Wyatt all day. The trainer says he doesn't think like that, that he only knows he's done wrong if we discipline him right away. Then he'll forget until we continue to discipline him right after he does it again.

I don't care I'm still pissed at him, but I'm also pissed that my parents were just down the hall and didn't hear me. My dad keeps saying I need to wear an alert button, but what good does that do if I'm stuck, and can't move to push it.

My little Wyatt may be extremely adorable and full of love, but that dude is a little fart. Were taking him to doggie kindergarten soon. Mom keeps threatening that if he doesn't pick up on the commands faster and start "doing his job" that she's going to have to give him away and get another dog that's already trained for someone like me....uh yeah, like were going to pay thousands of dollars for a service dog.

Besides, Wyatt is my baby, how could I give him away?