Let's Be Chronically Positive

I tend to almost die a lot on the holidays.  Right before my eighteenth birthday, which was in January about three years ago, I was in severe liver failure.  Last year at this time my heart was very unstable.  

I’ve learned from those experiences, even though I DO sometimes get into a slump, especially around this time of the year, and this year I would like to share with you what all I did:

• After finally giving in and getting a cane, over the summer I entered physical therapy pretty hardcore and was able to get my ability to walk back. Which was AWESOME.
• I went from being in a serious relationship to being single in order to find out who I am and getting myself to a place where I know exactly what I want and where I want to be.
• I spent an entire summer with my godson. It was amazing to watch him grow up.  There is nothing better than bonding with a child who you love.
• I went back to BG in the summer, and when I came back not only was I 100% (well, for me, not for everyone else) but I also took on an internship.
• I was hired by the Ohio Democratic Party, who I was interning for!
• I was able to participate in a Leadership Institute by Choice USA!
• I met a wonderful guy, who for the first time since my diagnosis, I feel is not brought down by my disease.
• I’ve begun looking for grad schools!
• Shawn and I saved a dog from The Humane Society.  
• In 16 days I turn 21!
• I have begun going to a Unitarian Universalist Church.

I’m still sick, and every day is a struggle.  But I’m happy. And I appreciate every thing I have.  Winter is always the hardest time of the year—no wonder I always almost die around now! However, there is always beauty.  

Hope everyone has a safe and happy New Year!

Hello Readers!

My hiatus is officially over and done with! My job is done and now I actually have time to write.  I was so busy these past few months between work and school I did not have any time to keep up with the blog and that was not fair to my readers.  Now I’m here and ready to give you my full attention.

So an update on my life as of recent:

These past few months I worked on an election in the great state of Ohio for Democratic Senator Sherrod Brown.  He’s an awesome man and it was an amazing experience.  I am so grateful for the opportunity I was given to internship for the Ohio Democratic Party and the opportunity to have been hired on.  It was once in a life time. 

As for my body when it came to that: It held up! Mind over matter. There was a lot of physically taxing work: long nights, long hours, and physically demanding work.  No sick days.  But my body held up.  I was able .  

On another note—I recently adopted a dog with my boyfriend Shawn.  Did I mention I entered a relationship? Well I did. And he’s an amazing man. I finally found the right kind of person when it comes to dealing with a chronic illness.  Someone who is supportive—but hands off.  Someone who has been through the ringer with tough things in their lives so they can empathize with what I’m going through.  Someone who is incredibly optimistic. He is a great man.  

So enough with the updating—let us get along with the post!

In Let’s Be Chronically Positive fashion I want to end this post with a lesson.  Today’s lesson is….drum roll please…

HANDICAP PARKING PASSES AND SNAP JUDGMENTS

If you were to look at me at this time of year wearing boots and a jacket this is about what you would see:  a seemingly healthy twenty year old women.  I do not limp much when I walk.  I look very healthy if you quickly look at me.  

Now if you were to actually know me you would know: 

 1. I do not limp much because BOTH legs hurt, therefore limping does not do much.

 2. I have a slightly deformed foot.

 3. I have the most painful disease known to medicine in 75% of my body.

 4. I have a heart problem that can cause me to pass out with over exertion.

My point: We tend to judge people who are seemingly healthy and deem them not sick enough to need a handicap parking pass.  But just because they are not walking with a cane, do not have a wheel chair, or are young does not mean we can assume they do not need their pass.  

The only time you should EVER judge someone or say something to someone about parking in a handicap spot is if they park there without a pass.  That’s just wrong.

So keep that in mind.

I’m glad to be back! 

Linda

I’m in a really happy place—a really scary place, but a really happy place.

My body has been mostly functional lately.  Every few days I get extremely tired and just need to crash, but for the most part I’m a pretty functioning person.  

Pain has been pretty low.  Which is a gift.  I’ve had few days where the contracture has been bad, and cramping has been bad, but for the most part I’ve been in the clear.  I’m really thankful.  I don’t think I could say that enough.  

The worst part has been the nausea.  I can’t eat anymore.  At least without overwhelming nausea, stomach pain, and all that goes along with it.  I’ve lost a lot of weight. I look damn adorable in my clothes though.  Haha.

I’m happy— I’ve met someone who for once in my life does not make me feel like I have to compromise myself at all to be with them, but instead makes me feel like I’ve expanded myself.  

We all have three parts of our heart—ourselves, our best friends, and the person that we eventually love.  I know there is that cliche crap about two, but I think there is three.

I finally found myself.  I love politics.  I want to write health care policy. I want to change lives. I have this blog.  I am an incredibly driven person.  No matter how sick I am I know every day is a beautiful gift given to us.  It’s amazing.  I know who I am, I know what I want, and I know what I need.  I also realize that can change and that it is allowed to change.  I found my third.

Not everyone has, but I think that’s one of the first steps.

I also found the third that fills best friends.  I have Pita and I have Kelly. They are my family (that are not related).  These two women have my back and I can be my complete and utter self around them.  I can be crazy, normal, bad mood, good mood, happy, sad, wild, weird, smart, stupid, and I can tell them like it is.  I do not under any circumstance have to pretend to be someone else.  These are the people who will be in my wedding, who will be there when I’m dying.  

They are my rocks.

And then, though I thought in the past I had found pretty cool people in my life, I never found someone who expanded me, and made me feel whole.  And I think now I have.  In the same way I made myself feel whole, and in the same way Pita and Kelly do.

I think it was all timing. 

I finally am in a place in my life where I can accept certain things. I know who I am and what I want.  I know what I will and won’t, most importantly won’t, do.  

You need to figure out yourself before you can let other people in.  I think that’s extremely important.  

And now my whole life is coming together.  I’m a little terrified.  New ground is scary—what does it mean?  What am I going to do?  With every new adventure there is one huge risk— failure.  It’s exciting (I could squeal with excitement). I am such a driven person, and I am such an optimistic and high-seeking person, but failing scares me.  Letting people down scares me.

To bring it all around— I think that is why this disease stinks some times.  No matter how smart I am.  No matter how much love and drive and passion I have in here (points to heart), sometimes my body will get in the way…

Sometimes, I almost die.

Sometimes, I get stuck in bed screaming bloody murder from the pain.

But, life is something we only live once, so we’ve got to push past it and do something, anything, because this is ALL we have.

This is why I choose to live.  This is why I choose to put my body through hell.  Because I want to live.

Sorry, I haven’t updated much lately. I’ve been REALLY busy.  But I love you all and as soon as November gets here I will update weekly.  

Promise!

I am in a bear of a mood this morning.

I feel like poop: my throat hurts, my head hurts, my nose hurts, and consequently, my body hurts as well.  I’m exhausted and I don’t feel like seeing a single person in the entire world today (except for maybe Kelly or Pita or Braylen) and I am just on the war-path.

I could probably just break down into tears at any moment (yay, crazy) and I could also probably get an attitude with anyone who just does not see eye-to-eye.

But, I am not going to let that be me today.

I may be exhausted beyond belief and everything everyone does may annoy me, but that’s not their fault.

So here is what I do:

First- as you all know I feel that you shouldn’t be angry all the time.  Those of you who know me personally know I’m easily frustrated, may rage for a few minutes here, but generally hold a sunny disposition.  Or at least I like to think so. If not, let me know now and I will work on that.  

But if you are angry all the time then that is all you are ever going to be. And what fun is that.

So recognizing that you are angry and in a bad mood is something that is relatively important in changing it.

Second- Have legitimate expectations.  Right now, at this moment, my body is pooping out on me.  There is no way I’m going to be perfectly happy and fantastic Linda.  But I am in no way going to allow myself to be black cloud and black mood Linda.  So my goal is: quiet, and tired, but not going to be pissy or complaining.  I may be silent, I may be a little short, but I’ll be a positive impact on people as opposed to a negative. I won’t let anyone get to me because this is my problem not their problem. 

Third- How to get from here to there.

The way I plan on doing this today is to make a pro-con list.  Look side by side at all the good and all the bad going on in my life today.  It puts everything into perspective.  Even though we may have a lot or a little bit of bad in our life we can almost certainly find that we have a lot more good.  

So here is my list:

Good

1. I’m doing an internship and my body hasn’t completely rebelled.
2. Through this internship I’ve met a lot of amazing people.
3. I got to see the President yesterday.
4. I recently met someone who is an amazing man and one of the kindest people ever.
5. I’m back to being with my sisters and that’s a gift I wasn’t sure I was ever going to get again. 
6. I’m alive despite almost dying twice in three years.
7. I have a functioning liver.
8. My pain has been really low lately.
9. I’m back in school.
10. My family is healthy.
11. We just got new amazing sisters.
12. My best friend is no longer a Rho Gam
13. My godson is a genius.
14. I am going to be graduating from college without any debt.
15. I don’t have cancer.
16. I got to wake up today.
17. All of my friends woke up today.
18. We are all here.
19. I have to parents who are still happily married and in love.
20. My brother is awesome.
21. My sister is awesome.
22. I have a cat named Captain Morgan who eats cheetos.
23. I live in America.
24. I’m not having tremors right now.
25. You all read this blog.

Bad

1. I feel really sick today.
2. I’m exhausted.
3. I’m frustrated with people today.
4. I wish I didn’t have class or homework to do.

Fourth-  Now that I made those lists I feel a little ridiculous for my bad mood so at the very least I can shut up and be quiet. 

And that’s how I suggest you do it.  However, if you have any ideas please share them.

What do you do?

It’s very defeating to be sick.  You can have a thousand dreams and goals and wishes and be pulled backwards like a rubber band in a millisecond.

The hard part is not always the pulling backwards—you get used to the physical. The throwing up (OKAY, I NEVER get used to that), the pain, the cramps, the exhaustion….I can push my mind past the disappointment and the physicality of that.  That’s not hard.

The hard part is feeling like you are the disappointment.  That you will always have this wall between yourself and the rest of the world. You versus them.  

Alienation.

That’s hard.

I push optimism, and I push realism.  And I am an advocate for not going to bed and for pushing through the pain.  But sometimes you have to stop and the mental effects of that is worse than the physicality of it.

But you have to push past it because otherwise you’ll get stuck.

You must always push past it.

So Yesterday:

HA Yesterday, wow, you with your so many shakey ma jiggers and ha-ha-ha wow.

Yes. I realize that sentence made so little sense it is not even funny.

But that’s how yesterday felt.  

I get tremors, it happens.  And every once in awhile I get them pretty bad (for about 10-20 minutes) but TEN HOURS.

Hilarious.

I’m super happy, and super excited, and all over amazing right now… but a big one is coming on.  I don’t even know how to prepare for it right now because my life is so hectic and it is the last thing I want.

Mind over matter….

Optimism over pessimism/ realism (YES, you just heard me say Optimism over REALISM…. me. What the heck is going on with me?)

How do you prevent a mega-flare when you know it is coming?

Dearest Sigma Kappas:

I love you.  Actually, it goes beyond that.  I appreciate you.  I would jump in front of a bus for any one of you and if anything happened to one of you a piece of me forever would be gone.  I do not say that lightly and I do not say that because “it is what you are supposed to say.”

Some of you may not realize what you mean to me.  I’m unintentionally tearing up as I write this because that is how big of a role you have played in my life.  For many of you Sigma Kappa gave you a home away from home.  Sigma Kappa gave you friends.  Sigma Kappa gave you someone to help you through a math test.  Sigma Kappa kept you here. And I think that’s beautiful.  

You may not understand why I take Sigma Kappa so seriously.  So I want to finally tell you and really try to make you “get it”.  Sigma Kappa for me is relationships, yes.  But Sigma Kappa is also a lifeline.  I was dying.  In many ways that may be literal, but my soul was dying.  I couldn’t walk, I couldn’t move, and I was alone.  And you fed me (you know who you are). You carried me (again).  You got me to my classes.  You did that.  When I was in the hospital hooked up to a heart monitor Sigma Kappa showed up and made it okay that I didn’t know if I was going to be alive tomorrow or if I was ever going to be able to finish school.  All of you did that.  

Sigma Kappa means so much to me because without you I wouldn’t be here.  And I don’t mean that in the sense that I wouldn’t be in Bowling Green and I would be off at some other school.  I wouldn’t be in school.  I have an amazing support system and a hundred people to build me up when my world comes crashing down because of my illnesses.  Without that I would not be able to attend college.  That is a fact.  

That is why I fight for this sorority.  Some of you may think that I push loving your sisters a little too much.  Some of you may think that my emails to you telling you how much I love you are ridiculous.  And some of you may think I take things a little seriously.  Some of you may not understand.  But I understand that when your world falls apart and you are ripped into tiny, tiny shreds it is not glue that brings you back together; it is the people who have surrounded you.  And that is you amazing ladies.  

Thank you for the amazing gift you have given the RSD/CRPS community and the gifts you give me every day.  Thank you for all that you do, all that you are, and all that you’ll be.

And to anyone who says that going Greek means you are paying for your friends, I truly say that you do not pay nearly enough.

Linda

So, there is another lovely woman who writes a blog about her ventures with CRPS/RSD and remaining positive.  She, like me, is full body.  She wears high heeled shoes and for awhile I also was wearing them until it got really bad, and I asked her how she keeps wearing them.  I loved her answer and wanted to share it with all of you.  So this is by Project 3x5 :

Hello Lovely! I’m writing to say I’ll be writing back to your ‘heels’ comment in a post soon! YES - I have full body RSD that started with a totally crushed foot (to the point that they wanted to amputate). In fact, I have no muscles on the top left foot so my toes actually don’t really bend up making it difficult for me to wear many heels. I refused to give in however and made my PT teach me loads of exercises that would help. For example: take a rough towel & lay flat, then scrunch with toes..until it’s rumpled. This will desensitize. Also do toe lifts by the hundred! Start in the pool. Work up to outside holding onto something. Then nothing! Start with low platforms & sit in them. Of course also wrap your feet with Lidoderm Patches. Not cute! But this is a labour of love! The Olympics of Shoes. You’re basically earning a ‘gold medal’. And it will feel so good once you’re done & can wear those gorgeous Choos for an hour or two (don’t get me wrong… it won’t be the same…) I’m not a doctor so you may want to check with him first. Please don’t go by my opinion if you have a funny feeling about it being wrong for you. However… it was right for me. I also got my balance back through Wii Fit games and by wearing Sketchers Shape Ups on short walks for a while. I also use a stick and my boyfriend’s shoulder. Also! I have a jar of marbles that I pick up individually with my toes. A lot, huh? But so worth it! Hope it helps! xx