Let's Be Chronically Positive

YAY I CAN FINALLY UPDATE!!

HEY EVERYONE!!!

Yes, it has been awhile. And not because I haven’t wanted to update.  Mostly because I haven’t been able to sign onto Tumblr.  So I want to divide this post into three parts:

1. I MISS YOU!

I haven’t been able to sign onto Tumblr on my parents’ computer for one reason or another.  I’ve made about 4,000,000,000 attempts all of which ended in failure.  I finally plugged in my laptop and it was already signed in so I didn’t have to find out if it would work or not!

I’ve really missed the positive vibe of Let’s Be Chronically Positive.  I’ve been incredibly busy this summer. Which brings me onto the next part.

2. What I’ve Been Up To

This summer break I have been working really hard on bringing my body back into workable order.  I’ve been going to physical therapy and I recently had nerve block.  In about a month I will be having surgery to have my Spinal Cord Stimulator Implant removed.  

Just yesterday I was in PT working on walking.  It was really difficult and my physical therapist was telling me that walking is a spinal reflex and that it is really quite simple.  Once we make the conscious decision to walk it simply “just happens.”  He said that it is really very easy.  I then laughed, and we agreed, “Until you can’t do it anymore.”

Working on your body is tough.  

I’ve also been babysitting by beautiful and amazing godson Braylen.  He keeps me running and is a strain on my body. But he makes me stronger in a thousand different ways.  He gets me walking without my cane and carrying around a 20 pound weight at the same time.  It’s hard but I love spending time with him.  

We also recently added to our family in the form of a kitten named Captain Morgan.  He is great at desensitizing by crawling on me, clawing at me, and leaving me all scratched up.  

3. Summer and What It Means

I’m having a lot less time to update this summer so I am going to try to keep up with it but I cannot make any promises.  I just want you all to know I am NOT going away forever! I promise! There will be plenty of Let’s Be Chronically Positive posts in the future.  But right now I have bad internet access and I am working really hard to build my body back.  So I can’t say how often I will post.  I love and miss you all and hope to get back sooner next time!

Children and Over-Doing It

Doing too much is something I do a lot of.  I am very INCAPABLE of telling myself to stop or to ask for help.  I hate admitting weakness or admitting that I am not good enough.  By not good enough I define that in terms of everyone else’s normal.

But what is so good about everyone else’s normal, anyways?

It’s hard to carry my godbaby around all the time because I am considerably weak.  And I also have a hard time walking.  But this creates magic in two very important ways. 

First, I test myself and push myself farther than I ever thought I could.  I build my strength slowly and powerfully.  It sets me back on my days off, but on my “on” days I am a warrior woman.  I would do anything for that boy and he gives me a strength I never knew I have. 

Second, we get to experience things in ways he may not with other people.  I am a lot more apt to get on the ground and crawl with him.  It takes the pressure off of arms and legs (yes, the crawling is uncomfortable in itself, but easier).  I get to see life from his perspective and he becomes fascinated with showing me things on his level… That is a magical experience. 

He also experiences a lot of important things with his godmommy.  He’s fascinated by my shiny pink cane.  I barely use it when I’m with him since I need to have a hand free (strollers are a cripples best friend!) but he thinks it is an awesome toy.  This is something most kids will never have experience with.  For him knowing someone young and disabled will be normal.

I love what he is giving me.  And at the same time I love what I am able to give him…

It is exhausting and it is painful.  But these are precious moments that give me a reason to fight through this disease… and now he’s helping me GET stronger…

He’s tiring, but man he’s an awesome little dude.

I will never apologize for my overdoing it personality.  Sometimes that puts me on my ass… I truly believe in the “use it or lose it” philosophy.  By doing too much that doesn’t make my pain any less; it just means I have drive and believe in doing the most with this life and refuse to be jailed by disease.

I have to remember I have only so many spoons, but no one should EVER feel ashamed for being a “go-getter”.  And too many people have told me they have been made to feel that way by other people who have their disease.  That is just a person who doesn’t have your drive trying to bring you down to their level.  Never feel bad for your ability to live your life while living with RSD, Fibromyalgia, Cancer, insert disease here. 

We all must remember that.

We already have it hard enough!  I have a hard enough of a time getting out of bed, I don’t need people to make me feel bad for being successful.  But you also don’t need to feel bad for not being able to just yet.  Just know it IS possible with the right mindset.

Home!

Hey Everybody! 

Sorry I haven’t updated in awhile. I’ve been super busy.  I’ve moved back home for the summer and when I got home I was immediately babysitting my favorite bundle of joy (My godson Braylen).  

I’ve learned a valuable lesson— One-year-old’s keep you on your toes! and they don’t care if you have a chronic illness.  It’s great physical therapy, and since I love him so much he gives me a drive I never knew I had. 

I am so honored to get to spend every Thursday, Friday, and Saturday with him.  I’ll probably never have my own kids.  I have too many health problems of my own and I do not want to risk passing this on.  So being a godmother is an honor that I am so happy to have.  I love that little boy!

Also since being home I finally cashed in on one of the benefits (eh..not really) of having CRPS.. closer parking.  I was once again nervous to admit I needed help, but the doctor was so nice.  I think she was surprised I hadn’t asked earlier! But, as with everything else, it is a big step for me.  I hate admitting I have a disability to the outside world.  

It also was confirmed that the RSD did indeed spread to my back/side/stomach area.  Even though I knew it, it was still depressing in a sense.  But I’m a fighter :)

Just wanted to update you all on why I haven’t posted.  Expect a post really soon with some Chronically Positive info. :)

Love and Peace, Linda

“I Remember You, You’re The Girl Who Was Stepped On At Prom”

I am in a state of bittersweet.

Today, I give myself permission to be sad.  I am mourning. Mourning is healthy.  It gives us freedom from pain.  

I remember that day so clearly.  Woke up. Drove out to Cleveland Heights.  Traffic was horrible. Was seriously frustrated. Smoked a billion cigarettes in traffic.  Picked Karl up.  Drove back.  Got all made up.  Put my dress on.  It was a beautiful dress.

So we went to the dance and we had fun. It was great going with a friend and not a date because you didn’t have to worry about any drama.  It was amazing.  So around ten-thirty, eleven p.m. I was getting a little tired and the song “Soulja Boy” came on. I didn’t really want to dance to it and I was debating sitting down.  I just stood there as people did the dance around me… the next thing I know the back of my ankle has this earth-shattering, bone-crushing pain. I have a really high pain tolerance but I immediately started crying it was so horrible.  

I sat down, we put ice on it, and we left.  But then of course afterwards I, being seventeen and young, drove around on it.  We went to Denny’s. And then we drove back.  And by the time I got home it was swollen.  

The next day—and let me tell you, my parents have both worked in the medical field, my mom for so long she’d kill me if I told you, and my dad did for over ten years, SO when I’d get hurt there would have to be a bone sticking out for them to take me to the doctor.  But the next day I was taken to the urgent care because it was swollen and I couldn’t walk on it.  

Tendinitis.

Three days later, I went to try to walk on it (after icing it, OF COURSE, worst thing you can do for RSD) and out of no where the worst pain, up to that point, came out of no where…. I started screaming bloody murder…. I couldn’t hold it in.  

They rushed me…rushed me to the urgent care.  

This time they thought I had chipped a bone at some point in the past and by getting stepped on the bone had moved.  (Later found out I just have an extra bone in my foot, it is actually quite common)

Ten days, no walking on it.  It should be perfectly fine by then.

Ten days later I have this:

That is how my journey with RSD began.

Three years ago today.

Today is a hard day.  A lot in my life has changed.  I have had to grow up a lot faster than most of the people in my life.  I have to be a lot more cautious.  I have to take things a lot more seriously.  Every single thing I do I plan out in my mind three steps ahead: How is this going to affect my pain?  That is always in my mind.

I used to just be different on the inside, but now I’m different on the outside…at least more openly since I have the cane.  That’s been a difficult adjustment.  It’s hard to lose an essential part of yourself.  I’m working on it, but it is hard.

Today I recognize the parts of myself I’ve lost.  I also recognize the parts of myself I’ve gained.  But today is still a very difficult day.  

Happy Anniversary! (Not!)

It has been three years… 

Today will be interesting.

Post to come.

I Am Sitting Here Meditating…

I really should be studying right now… I’ll get right on that.

But, I just tested my Chakras. And I need to open my Root, Naval, and Throat Chakras.  So I was opening them through meditation.  And before I get back to that I was inspired to write this post.

So back in November when I was in the hospital I was on Facebook at a really late hour and I was talking to someone and they suggested trying meditation.  I never really thought about it prior to that but I have always been open to trying new things.  So that night I tried it in between the nurses coming in and out making sure I was still alive…

Anyways, I was really glad he suggested it (Thanks, Tim! I don’t know if I ever told you that) because now I like to meditate, especially in times of stress.  For example, prior to my Chakra meditation session I was just trying out for fun I was feeling REALLY bad, but right now I’m experiencing some sort of high from the meditation session…

I don’t know why but meditating puts me at this sort of state where I am outside of my pain.  It’s still there, but I am at a different place in my head.  I think that’s the best way to describe it….

My point:  It never hurts to try new things.  Meditation is a great thing to try, especially when you live a stressful life.  I’ve been on this mission to living a healthier life, which I fail at A LOT, but I’m working on it.  And this is something that helps!  

Any thoughts? Now I’m going to head back to my chakra meditation (find your chakras here, trust me it was a cool little quiz)…and then study…I’m going to be up all night.

Linda

Sometimes You Just Have To Laugh

I have a favorite quote.  I don’t know who said it or where I first heard it.  It probably was on one of those fancy pictures that have words on top of a photo that has absolutely nothing to do with the quote.  But it says this:

Wherever you go, no matter what weather, always bring your own sunshine.

I’ve loved this quote for years.  I cannot even remember how long ago I came across it.  Middle school maybe?  Gosh…that was what? Eight years ago?  When did I get so old? But I love this quote because it speaks the truth, even when things are horrible you have the power to decide how you act about it.  You can’t necessarily control your emotions but you can control how you act from those emotions.

For example if you are sad: you can accept that sadness and realize it, you can watch sappy movies and cry, you can work out and be productive with that sadness.  OR you can be a total bitch to everyone you know and lay in bed for days, or you can eat your weight in greasy food for days on end.  

I’m not saying I haven’t done both ends of the spectrum there.  I’m saying that you are in control of your actions.   

But I’m getting  more specific situation here; yes, there is a point to this.  

I’ve been super sick this week. I’ve had multiple infections, plus flares. I have one infection that needs antibiotics and when I went to the doctor they were concerned because my bacteria count was really, really, really high. (Yay me!) That needed to get taken care of.

Simple. Get some antibiotics.

Not so simple.  

In March I had a nerve block and I found out I have a really bad allergy to iodine/betadine.  The kind of allergy where I am at risk of having anaphylactic shock or something like that.  Well, all the antibiotics had an ingredient with iodine in it.

I also can’t take benedryl. So they couldn’t give me any at the risk that I would take it, have a reaction, and wouldn’t be able to take anything to stop the reaction.  

Yeah. So I was miserable.  I was nauseous, I was in pain, I was super sick.  And I couldn’t even take anything to make me better.  I also had to take my temperature every hour to make sure I didn’t get a fever and if I did I would have to go to the emergency room.

And most people would get really mad at this point.  And I thought about my favorite quote…

And I decided… 

You just have to laugh.

I finally got an antibiotic, but it’s been making me really sick. I’m flaring from being sick.  I just want to be home and not in my dorm room.  But I’ve stayed very upbeat because I can choose how I deal with this.  My bed is nice and warm which is wonderful and I’m going to work on homework in between napping and watching movies.  I’m also really glad to know I have people who are willing to do things for me that I never expected.  It means a lot.  Now I’m just hoping that fever doesn’t happen….

Stay Positive Everyone!! 

Linda RSD/CRPS, POTS, Fibro, Other

Michelle

When you have a rare disease meeting people who have it is something very near and dear to your heart.  These people, though they may be separated from you by thousands of miles, understand you in a way that those who know you best cannot.  They share with you pain, hope, understanding, fear, and smiles, laughs, jokes, fun.  The conversations you have not only lead to camaraderie but to friendship.

Today, when I went into my last class I opened up my computer and, as I usually do, robotically opened up my Facebook news feed.  The first story I was greeted with read this (identifying details have been removed): 

Dear friends of Michelle, It is with great sadness that her family let you know of her passing. Michelle was a devoted mother of two precious boys and loving wife of Robert. Memorial arrangements are being made at the Forest Lawn Cemetary in [city] for this Friday evening. The time has not been confirmed, but we will post as soon as we know. Michelle loved her family, friends and her Savior, Jesus Christ. We rest in the confidence that she is with Him in heaven today.

Not the thing you most want to see upon entering class, let alone ever.  I was so proud of myself from holding back my tears, but I could not hold back my shock.  She was so young.  She was such a vibrant person.  Why?  

Why do I need to know why?  Is it because I’m sickly infatuated with knowing why? Do I have a sick curiousity?  No.  It is because maybe that answer will explain why someone so young, beautiful, vibrant is gone too soon.  

This post is dedicated to Michelle, her family, and all of those who have lost a loved one.  Let everyone you love know that you do.

Michelle, I believe that you are here with us.  Your body will eventually come back to the Earth and you will be part of the Earth, the grass, the trees, the air.  I will think of you often and of your family.  You are gone too soon.

Michelle, like myself, also had Reflex Sympathetic Dystrophy.  She had been diagnosed within six months at the time I had met her.  I remember when I was first diagnosed.  Those days were very hard.  It was a whirlwind of new experiences and terrifying realizations.  It’s scary and depressing.  Michelle was working hard to remain a good mother in the eyes of her two young children.  She often would come to me with her worries and I would tell her that as long as she loved them the best she could they would understand everything else.  She would constantly tell me how much they lit up her world.

A loved member of the RSD community and someone a close friend died today.  It’s weird to think that life just ends.

For those interested there will be a fund set up with the RSDSA at 877.662.7737 effective at noon time on Tuesday, April 24th, 2012. Donations can be made through Monday, April 30th, 2012.  She has two young sons.

Update of Awesomeness

You can now post comments on the blog post so now everyone can interact. Also you can like the blog posts as well and that might show up on your Facebook.  Try it and let me know!! I’m super excited so please, pretty please, take advantage of this!