Let's Be Chronically Positive

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?

Okay- So I’ll admit it. When I had my surgery I was terrified. 

Not just a little scared but stayed-up-all-night-toss-and-turn-petrified.  I was not terrified of dying. I mean, a little—but the normal amount of “hey, I could die.” But what I was really terrified for was the part of the surgery when they were going to be moving the little wire ma bobbers around in my delicate and now  very, VERY tiny (due to scar tissue) spinal canal.

And I wasn’t even worried about the lower one.  The lower set of leads, well if they screwed that up and I could never walk again than HEY, I’ve been there, BEATEN that.

Yes, I could handle it.  I could still take care of myself.  

What kept me up at night absolutely petrified was being paralyzed from the neck down.   I remember every bit of me that was stimulated by the electricity.

My neck…my fingers…my arms…sometimes even my chest…  So to screw that up..to massively screw up that area….

You can imagine why I was not sleeping.

This year I saw what is wrong with the world in its mildest forms.  Women getting hit and killed in a head on collision that they couldn’t see coming.  A young girl taking her own life when it became too much—and her friends “liking” the status.  

And then my own misfortunes.

So of course I was no longer the innocent little girl who was calmed when her parents said “It is all going to be okay.”

One person really made me feel better.  And though it was not such a big thing to them, to me it was huge.  I could breathe. I could sleep. Sleeping made my pain go down, made my heart race less, made everything… better.

No one gets that unless you’ve been sick.  Stress makes chronic illness a billion times worse.  I didn’t choose a billion lightly, I mean that.

I didn’t get to where I am now by keeping people in my life who stress me out.  Seriously. 

The minute someone begins stressing me out I step back.  I delete them out of my life (quite literally, Facebook, Twitter, Phone, even though sometimes it is misplaced and then I am like “Idiot, that was stupid”). 

I have no problem going my own way if I need to because I don’t want to have to depend on someone else, but I also welcome people who I care about and seem to actually care.

I really appreciate those people in my life who are awesome.  And I don’t know if I tell them enough.    

You people are awesome.

The point of this post is:

- Sometimes you’ve just got to know who to talk to.

- Make sure you let the people who are REALLY there for you know you appreciate them.

- When you are stressed always take a step back and think about “What can I do to solve this problem.” If it can be solved, solve it. If not, then don’t worry about it.

- Thank you to my people. 

- Insomnia.

Tomorrow, Tomorrow, The Sun Will Come Out Tomorrow……

Well, tomorrow the Spinal Cord Stimulator comes out.  I’m experiencing a thousand different emotions on the eve of this surgery, even more I think than I was when it went in! 

When it went in I was completely and utterly miserable. I couldn’t go to school, I couldn’t walk, and I had complete tunnel vision: feel better. I didn’t care what the doctors did or how they did it. They could of killed me and brought me back and if it helped, then hey! at least it worked.

And quite frankly, at that point, even the worst of complications couldn’t of been any worse than what I was experiencing then.

Now I have things under control. And though I want this surgery, man do I want it, I have also realize the risks. Because there ARE risks. Going in there were no risks because nothing was worse than what I was experiencing. Going out…a lot could go wrong.

And that has been on my mind a LOT.

I think of paralysis, spinal fluid leaks, death.

At this point I bet you are wondering why the hell I am getting this thing taken out. Isn’t it better how it is?

Well, I’m in pain. All the time: but with it out I can be in pain and:

• ride roller coasters
• go on boats
• speed boats, not lame boats, but boats that have risks
• go jet skiing
• go on a four wheeler
• tubing
• skiing
• water-slides
• muddin’
• sit on wooden chairs without pain
• lay on a wooden floor without pain
• not freak out every time I fall that I screwed up my spine

And a much longer list.

So as MUCH as I’m nervous I am also excited.

Anyways, I hope everything goes great tomorrow.  If it doesn’t I just want you all to know that this blog has been awesome and I’m so glad I’ve gotten to share so much of my life with so many of you. But it’ll go great so I’ll get to do more! I’ll make sure to update you all when I’m able.

Back in November, for the second time in three years, I was close to death.

And since November, I’ve been in a non-stop fight for my life. Not in the sense of trying to live.  I’m not going to drop dead any time soon as long as I keep taking my medications.  But, in November a lot of things changed for me.  I lost my footing and realized how important every piece of the puzzle is.  

We never, ever think about how important every moment is until it is too late.

It’s almost been too late for me twice now, I’m not going to test my luck again.

Since then I’ve welcomed every moment, whether it has been amazing or terrible.  Even when I’m miserable and I think to myself “Can this just go away?” I actively stop myself and think…feel this moment..enjoy it…it’ll be gone fast enough.

I’m really tired right now.  Last night I had a slumber party with my godbaby.  It was awesome.  Then today after I finished spending time with him I finished a surprise I’ve been working on for my parents’ anniversary.  But I’m very content.

I’m also looking back on the time since November.

There are a few people who are no longer in my life now that used to be.  I finally figured out why.  

I needed to work really hard at moving my life forward.  And I couldn’t do that with any negativity.  Anyone who told me I couldn’t do it, even if they meant it with the best intentions, had to go.  I had to put myself first.  

This is finally something I can live with.  

When dealing with chronic illness if there is ever anything getting in the way of you being who want to be, don’t let it.  You can do anything, and it’s your job to accomplish everything you want.  The world will get you down, so you can’t surround yourself with any more negativity than you’re already going to meet along the way.

Sorry it’s been awhile! I don’t get a lot of time to update here at home.  It is hard to get wifi here at home and also get time to update.   

So let me update you.  This summer I’ve been doing a lot of physical therapy.  Tons and tons and tons of it.  I’ve also been lifting the baby weight (aka Braylen) and it’s helped a lot. 

I only need my cane on really bad days or when I’m going long distance.

I remember a few months ago I thought I was never, ever going to get off of the cane.  And though I still need to use it at times I got past that.  And I wouldn’t of if I wasn’t working my ass off. Pardon my language, but I still tried my hardest.  I was realistic, but optimistic.  And though I was working my butt off just to regain my strength and lift myself say..out of a pool and not necessarily to walk by myself my hard work paid off and did me one better.

Without a positive outlook that doesn’t happen.

You can’t do anything with a negative attitude.  No matter how good you have it or how bad you have it, if you have zero drive you are not getting anywhere.

Just wanted to update really quick! Hope you all are doing well!

Today’s a popular day for Let’s Be Chronically Positive posts! I’m glad my co-blogger Katie wrote today. It’s been awhile and it makes me rather happy.  Katie, you are an amazing woman and I would absolutely love to get to know the real you.  And who cares about normal.  I’m not normal and I’m pretty damn awesome. 

So Anyways. Onward.

Linda’s topic for today: the ever looming cane.

So, yesterday, I finally made the purchase of The Aide. I found that canes are actually pretty dang expensive so I bought it online. So now I’m waiting for it to come in (should be here Thursday) .  Actually, them.  Them to come in.

I couldn’t decide if I wanted to get pink or black.  

Pink is my favorite color, it’s feminine, it’s young.  I am twenty years old, and if I’m going to be using a cane I might as well have one that is cute and young, correct?  

But then I was thinking I should probably go with black.  Black sticks out less.  Black will match more clothes.  I’m a twenty year old with a cane…people will already stare enough.  I don’t want to scream “Look at me.”  

Well, then, at the suggestion of my Aunt, I decided to go with both.  I got the pink for “most” use.  I don’t plan on using a cane ALL the time, just on the bad days (okay, I do realize this is most of the time, but let a girl have her hope).  I am twenty, and people already stare at me enough.  I might as well have a pretty cane for them to stare at, too.  I also got the black for when pink won’t match.  It also folds up, so on my good days I can bring it with me and have it for if I overwork myself.  This way I will ALWAYS be safe.  

I’m terrified.  I’m terrified of seeing people and them not understanding.  I’m terrified of the thoughts like “You didn’t use a cane yesterday, but you need one today?”  Or “You needed a cane yesterday? But not today?”  Not everyone reads my blog and knows I have Reflex Sympathetic Dystrophy which is a progressive, neurological disease that varies from day to day.  Some days I’ll need it, some days I will not.  But instead, I’m worried people will just judge.  

I know that’s silly.  There is an eighteen year old woman, Brooke Dutridge, whose mother is a part of some of the support groups I am in.  Myself and her have a lot of similarities.  She has RSD full-body.  Mine is in all four limbs.  We both have dysautonomia (AKA problems with our autonomic nervous system).  Her mom and I were tentatively planning a time for me and her to meet so I could talk to her and let her know that despite having RSD she can go forward and go to college and be independent.  Or at least to just give her someone who is older and has just gone through everything she is going through.  Even though I have yet to meet her, I feel for her big time.  She is in her senior year of high school at Sylvania Southview High School.  I remember my senior year of high school, and spending so much of it at home.  I felt so incredibly alienated.  Well, today her mom commented on one of my posts in the support group saying that her daughter uses a WALKER.  Not only that, but she USED to be in a wheel chair.  This young woman, who is already going through so much and is at a time in her life where even if she didn’t have RSD she’d already have trouble fitting in (though from pictures I’ve seen she’s beautiful, and I only mean that as in high school sucks for EVERYONE, not just those who are sick like us) and she is willing to use a walker.  And I’m afraid of a cane.  Not only that, but she’s had RSD since she was 14.  I was diagnosed at 17.  So she’s been dealing with this for a much longer time.  

<——That’s Brooke. 

I am a strong woman, and I am a fighter.  But when it comes to using an aide I’m a baby.  So I’m going to be strong like her, and I’m going to look up to her.  

So the point of this post: People aren’t going to understand.  But who cares?  You can be strong.  You just have to get in the mindset.  So get in HER mindset and be a freakin’ warrior!!!! 

I know this is for the best, but it’s an adjustment.  But I am a strong woman.  And I am a fighter.  

Wish me luck!

Linda RSD/CRPS, POTS, Fibro

In a previous post, I Will Not Be Dancing On A Table During Spring Break, I talked of how, similar to last Spring Break I will be spending this one in and out of the hospital and doctors appointments.

Well, I want to elaborate on another part of this now that Spring Break has arrived.

As most college students who have gotten past the point of homesickness and who have made friends and enjoy college life, I love being at school.  Being at home for an extended length of time tends to be less fun, and I can’t wait to get back to the atmosphere that includes Sigma Kappa and BGSU.  When I was hospitalized last semester and ultimately had to medically withdrawal by the time everyone’s winter break came around I was in a state of dying to head back to campus. 

However, in my state of dying to get back to campus, I over-judged my ability to be able to head back to school.  Unfortunately, I’ve been suffering the consequences of that decision.  But, I’ve also done something amazing with it. 

I’ve raised awareness of Reflex Sympathetic Dystrophy on my campus.  More people know about it now than they did in November.  And hopefully more will.  Once we finally put the money into the account, I will have raised over $650 dollars for the Reflex Sympathetic Dystrophy Syndrome Association. If you would like to help my cause you can do so here. I was interviewed on the BG24 News which on this upcoming Thursday will be on TV, so hopefully that will raise even more awareness.  I made this blog, which hopefully is helping those who read it to either understand what it is like to have a chronic illness or to help them get through having a chronic illness.

So despite how bad my health has gotten these past months, I’ve made it my goal to do good and become someone who inspires and doesn’t sadden. 

But, being home it is nice to be able to not have to work extra hard.  People expect me to be a certain way, which is perfectly fine and understandable, but it is very, very tiring and I can only do it so long.  It is nice to not have to have people constantly stare at me. I know others stare at me because they are ignorant, and I am interesting.  I mean, seriously, how often do you see someone with a turned in foot like mine? I could be in a circus. (I’m smiling and laughing internally as I write this).  But here, I have people who completely know what I have been going through since day one.  They know every part of my medical history.  They also do not over-worry.  They help me when I ask for it and in no way give me a hard time, but give me my independence.

So my point is: Though we can get frustrated with our family, we must remember they are the people who we can be ourselves around.  Unlike the rest of the world they are there from the beginning. Those who are there from the beginning will get it unlike everyone else. So appreciate that, don’t push it away.

Also, I would like to take a moment and remember the three lives of the women lost in our Panhellenic community this Friday.  BGSU has lost too many this year, and this tragedy is another.  This has been a tragic week for my two communities, Northeast Ohio with Chardon, and BGSU with this horrid accident that lost the lives of three women.  Please keep their families in your thoughts.  All of the BGSU community is hurting.

So I just got off the phone with my mother.  And during  that phone conversation, I finally brought up to her something that I knew I needed to.  

First: I was a child who was ill most of my life, but because it was for reasons we would not find out about until much later, I was often called over-dramatic, a faker, or my favorite, a hypochondriac.  For clarifications sake, and for they’ll kick my asses sake if I don’t, this was not done solely by my parents, but by teachers and other adults being huge contributors. So now, nearly three years into my journey of diagnosis after diagnosis, I almost long to actually be a hypochondriac, but the negative connotations of those names still resonate inside me.  I worry when I have a concern about something, or when something is wrong, or I think I need help medical-wise that I am being silly, or over-dramatic.  I will also have more nerve-wracking concern that people will actually think that about me.  

So for the past few weeks at the advice of some of my closer confidants, I have come to the realization I need to consider getting an aid.  A walking aid.  Walking at times, not all times, but some times, is quite dangerous for me.  I have a hard time keeping up, I get very weak, and I fall.  As I have been getting sicker, this has been becoming more and more of a problem, but, of course, I had a lot of reasons to resist.  

First, I am twenty years old.  At twenty, you do not want to be using a cane, or be stuck on crutches, or be in a wheel chair, or using a walker.  I also have this idea in my mind that it is a slippery slope.  Once I am in, I will never come out.  

Those were my most intense fears.

But then there was also: how do I start this conversation?  First, how do I talk to my parents about this? Are they going to think I’m being over-dramatic? I know my boyfriend will immediately agree this is probably a smart idea.  He knows how bad things are.  But they don’t see me on a day to day basis anymore.  They don’t know what it’s like. 

Also, my doctors.  They see me for an hour.  And even then they don’t see me.  My last appointment I saw my actual doctor for 5 minutes.  I saw the fellow, but he didn’t have me walk.  What if they think it is a bad idea? Or think I’m being crazy or over dramatic? 

So obviously, this is a huge problem.  

Well, I finally came to a conclusion.  There are benefits.  If I get an aid I’ll be able to be more independent and won’t rely so much on others to help me.  I’ll also be able to do more things because I won’t tire myself out so easily.  Hopefully by getting pressure off of my right foot a little bit, while keeping mobility, I will be able to slow down the contracture.  I also will probably be less likely to fall, which is really embarrassing in public.  

So I brought it up to my mother, and she told me that she noticed I do need help.  So I was afraid of bringing it up to her for nothing.  

She also said that just because I may need it now, doesn’t mean I’ll need it forever.  And that’s true.  Things can get better.  

Basically, the reason behind this post, is not to whine about my problems, I promise, but that you should never be afraid to ask for help because of social stigmas.  

One week left until the 

Sigma Kappa Eat For RSD Spaghetti Dinner!

For $5 Dollars you can have all you can eat spaghetti between 6 and 8.

All Proceeds Go To RSDSA!

At the BGSU Sigma Kappa!

Can’t go? 

Donate at: http://www.firstgiving.com/fundraiser/letsbechronicallypositive/letsbechronicallypositivesfundraisingpage

Sometimes I wonder: Is this real life?

So I feel as if I should update you all on how my office hour visit with my philosophy professor went….oh man. So to make this simple we are going to refer to him as John (As in John Locke, get it?) 

I should probably also let you know that I had was under the impression I had gotten a D on this exam…I had thought I received a 79 out of 120 points. 

So I go into the office and I was my awkward self because I was feeling incredibly, mind-blowingly “stoned” (thanks, Tramadol and Topomax, you guys are great) and I couldn’t feel my body and I was like: