Let's Be Chronically Positive

School starts in just about 20 days! I’m very excited to head back.  I’m going to be taking some really awesome classes this semester and some I’m not too sure about.  The one I am most excited about is Philosophy of Religion because, despite being an Atheist, I love learning about religion and actually am very “spiritual.”  By that I mean I love to meditate, especially when I am stressed, and I have a very specific world view.  According to me we have very little control in life.  Everything is a series of cause and effect and though we feel like we have control we are really powerless and everything is basically set in stone.  That doesn’t make me lazy, it’s just the way I look at things.  I feel that if I look at life that way then it puts me in the position to do the best that I can but to not worry too much about it.  Takes the pressure off.  One class I’m NOT looking forward to is Writing About Literature. I’m taking it for required credit (yay Liberal Arts degree) and though I am not too bad at it, I hate writing.  I love reading though.  The rest of my classes should be interesting (Cultural Anthropology, Russian, Modern Ideologies).

With school comes a lot of stress and hardship on my body.  About a week or two of starting school I always go into a very severe flare and I’m not looking forward to that. But since I am going to have my car at school I’m am really glad I’ll be able to go to class even on the bad days.  

Despite being very sick, I am one of those people who give 110%.  I know a lot of people who are sick and spend most of their time sitting at home.  And I understand it, but that’s not for me.  I realize I am going to be sick and in pain and miserable 24 hours a day, 7 days a week.  So I like to go to class, get involved, be a great student, sister, leader.  I only get one chance to live (just once!! Once!) So I might as well push on through.

My plan for this semester is to make sure I keep my body healthy.  I’m going to work on eating right, sleeping right, and exercising.  I also plan on keeping organized because the less stress I am under the easier it is for my body.  And I’m happiest when I push myself.  I lost an entire year last year, so this is my time to get involved with Sigma Kappa and other organizations, but I also need to tell myself no when I need to.  

I’ve got to make sure I do everything right, but also have a whole lot of fun!

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!

Hello Readers!

So as you all know, or at least those of you who have been following for a while, I recently went through a break-up from a serious relationship.

For those of you who are new I’ll give you a quick backstory: I was dating this wonderful man for but sometimes life just gets in the way.  Sometimes people just change.  I have no hard feelings towards him and I hope he has none towards me (though if he did I would totally and completely understand).  But I highly respect him and if one day things change, than things change. 

But: I am at a rough spot.  I am on a bajillion (hyperbole much?) medications that all interact with what a normal girl my age would do when broken up with: drink with her friends.  So I can’t do that.  Which is fine.  

But,

I also had this idea that I couldn’t go out with my friends. I was terrified for a lot of different reasons:

 1. I have a cane—people are going to stare.

 2. I have RSD—crowds of people, loud noise, all sound super painful. 

 3. My friends are not even going to want me to come with them anyways because I have this disease and they’ll feel like they have to babysit me.

 4. I am already exhausted 24/7.  Going out to three in the morning will just kill me.

But I was sad. And I needed to be distracted. But of course, on Friday and Saturday nights at college people GO OUT.  I had to get over my fear.  I am a conquerer. I got over going having my first procedure. I got over having my first REAL surgery. I got over taking my first painkiller. I got over having a battery in my back. I got over the idea of going to college. I got over experiencing the worst pain any human being could feel every day of my life…. 

I remembered something I always tell myself when I am going to do something new:  

You are going to be in horrific pain anyways.  Whether you are lying in bed, laying in a bath tub, wearing no clothes, wearing uncomfortable clothes, surrounded by no one, or surrounded by a thousand people, you are going to be in horrific pain anyways.  Don’t let RSD control  your life because you are afraid of pain because the pain will come and go either way.  It might get worse while you are doing something fun and exciting, but it might get worse while you are laying in bed.  Wouldn’t you rather being doing something fun and exciting?

I never use this to make myself be in pain.  For the going out example: I don’t wear high heels. I wear these black fabric slippers. I prefer wearing a skirt to jeans, a tank top to a long shirt. But that statement above is what got me to go to college. It is what got me to branch out and instead of just staying in my room and avoiding pain led me to make some of the best friends I will ever have.  No matter what I will ALWAYS be in pain.  I will always be in HORRIFIC pain.  Some times it will be a little worse.  So just live your life and stop being in fear of that pain. 

I listened to myself.  And you know what? It was awesome.  I’ve gotten free drinks (non-alcoholic) from the bartender.  Free drinks from guys.  Good looking ones too.  I’ve had so much fun and realized I am beautiful despite RSD, something that I’ve really needed at this time.  I use my foldable cane so when I’m outside or if things get really bad it is in my purse (trust me, you do not want to use a cane in a bar).  

I am living my life MY way.  I am getting bits of me back.  I think this is both thanks to me and my fabulous doctors who have FINALLY figured my medications out.  

Thank you Dr. Hayek.  He always told me that RSD was not a death sentence.  He ALWAYS told me that I needed to live my life and do as much as possible and that even though I was in pain I needed to keep moving and hold on to as much as possible.  Sometimes this philosophy really pissed me off—I was in pain, I was hurting, I was tired.  But by never being babied I’ve been able to be a real person.

So this picture came across my dashboard.  And I thought that it speaks the truth.  Bullying is bad.  And you are beautiful.  Life gets better.  Even if it really sucks now there is ALWAYS something to live for.  Those all sound really cliche don’t they?  Either way, they are true.

When I am screaming and writhing in pain, even though not being alive would be a hell of a lot less painful, I want to live because if I was dead I would never get to see my favorite baby Braylen’s smile or Miley run around in the snow.  I would never get to go to law school and work on my dream of improving the lives of those with chronic illness.  I have so much to live for. I don’t want to die.  

But, people with RSD/CRPS do contemplate suicide.  That is something that is often ignored and we don’t talk about it.  RSDSA.ORG has two articles on suicide, which is great because it is better than nothing, but suicide is still a stigma.  When I had my RSD spread from just my right leg, to my right leg AND my right arm, I thought about it.  I seriously considered it.  I obviously didn’t go through with it—I love living too much.  But it does happen.  Some aren’t so lucky.  

It is recommended as a protocol that when diagnosed with Reflex Sympathetic Dystrophy that patients are treated not just by a pain management doctor or a neurologist (or both) but also by a psychiatrist because this is a major life change.  I was diagnosed with PTSD/Reactive Depression after getting hurt.  I couldn’t even go into a crowded area for over a year and a half without going into an anxiety attack.  

We need to get this information out there and make sure EVERY pain managment doctor, neurologist, and any doctor who will come into contact and treat an RSD patient knows that this is the correct protocol.  This will help make sure that RSD patients are able to adjust to this massive change in their life. 

Luckily, I’ve been able to come out to the other side.  I am a very happy twenty year old woman.  My life is hard but I can deal with it.  A large part of that is probably due to the correct treatment I received.  

Let’s save lives.  Ways to help do this are to REBLOG this, TELL everyone and anyone, or DONATE.

Today sucks.  This week has sucked.  

This week I went into a flare—my pain had gotten a lot better after the cold finally broke, but as the temperature dropped and the pressure flipped and flopped my pain skyrocketed.  Falling came back, sensitivity came back, feeling as if I was being mauled by an animal with razor sharp teeth and claws ( Miley) came back.

 Not only that, but I also had some woman issues.  But not normal ones.  I had started a medication for my RSD which I LOVE—it has helped my pain when the weather is not being horrible, it had helped me lose some of the weight the medications have put on me and also the worsening of my condition caused, and when I’m not flaring I really do feel better.  However, it has a side effect: It can make birth control ineffective.  Well ladies, I thought this just meant use a condom if you are going to have sex, which if you don’t want children, or if you are not in a committed relationship where you and your partner have been tested for sexually transmitted diseases, is something you should do anyways.  Well, this also means that it can make your regular periods come back.  So on top of my flare I have had horrific cramps and unrelenting nausea.  

So women: Always know going into a new medication that this CAN happen.  If I knew it could happen at least I would not have been surprised….

As you can imagine I am not in the best of moods.  I am in tremendous amounts of pain, I feel horribly sick, and on top of it all I am a college student which means I have a lot of responsibilities.  I also am trying to prove that I can handle this all on my own. 

I’m trying to prove that I don’t need to constantly rely on my friends to help me do things, and I am also recently trying to ALWAYS go to class even when I am screaming on the inside.  I even am trying to rely on my parents barely, except for financially (because I am a college student who cannot work) so I try to not go to them when I need help.  I feel I need to prove it to myself that I can do it.  

So add all of this together and as you can probably imagine this week it has been really hard to stay positive.  I’ve had a lot of anger at the situation and a lot of anger at how I feel physically.  I’ve also gotten very overwhelmed.  But one thing I have noticed is that I never felt that I was INCAPABLE.  There may have been times I had to wait until later, or take a break.  Or realize I had to only do my priorities or a little at a time.  Like today: I realized that I had run myself into the ground this week.  So I realized I needed to stop.  I had a test and I went to that class, but that’s all I’m doing for today.  I HAVE to get laundry done today because I have run completely out of clothes that I can comfortably wear, so I had to choose, go to classes and be done for quite possibly today, tomorrow, AND Sunday, or take my test and get some of my laundry done.  I need to rest and replenish my spoons; Wednesday I used up an entire weeks worth!  I can barely walk.  My body gave out once on me today, so going all across campus was not an option.  It’s all about priorities.

Part of being positive isn’t just about your attitude, but it is about the lessons that life comes with.  It is about if you choose to learn from them or if you choose to just drown in misery. I am allowed to be mad at the universe right now because quite frankly, the universe is out to get me this week.  However, I am also learning valuable lessons from this experience.  And those are what matter. 

Linda RSD/CRPS, POTS, Fibro, other

So as a college student I find it is REALLY hard to relax.  Particularly these past few weeks as it has been midterm time.  I’ve had very little time to do anything other than study, let alone relax!

But having a bazillion chronic illnesses stress is something I have to keep control of.  My body is a temple that already has a war going on inside of it. Well, stress is like giving the soldiers nuclear weapons and allows them to wreak havoc.   Most illnesses are like this, not just RSD.  

According to this place, for a normal person stress can raise your blood pressure, suppress your immune system, contribute to infertility, and even make you more likely to have a heart attack (HOLY SHIT).  And if you have any of these conditions: 

• pain of any kind (hey, that’s me)
• heart disease
• digestive problems (check)
• sleep problems (check)
• obesity 
• depression
• autoimmune conditions (also me)
• skin conditions

then stress can make them worse.  

SO I thought it would be awesome to make a list of FIFTY ways to Relax

1. Take a Bubble Bath
2. Take a Walk
3. Get a Massage
4. Smell a Candle
5. Bake Cookies
6. Listen to Music
7. Play the Piano (badly)
8. Go Outside and Scream
9. Watch a Movie
10. Go on a Run
11. Take a Nap
12. Go Out to Dinner
13. Hold a Baby
14. Play with a Puppy
15. Watch TV
16. Go to the Beach
17. Go on Tumblr
18. Clean
19. Take Your Dog for a Walk
20. Go Shopping
21. Play Video Games
22. Pray (if that’s the sort of thing you do, doesn’t have to be to God)
23. Talk to Friends
24. Watch Harry Potter
25. A Relaxing Beverage or Smoke (if you are of age)
26. Go to the Movies
27. Join a Book Club
28. Exercise
29. Listen to MP3s that Sound Like Nature
30. Meditate
31. Go Hiking
32. Get a Smoothie
33. Do Some Yoga
34. Play a Sport
35. Write a Poem
36. Play a Guitar
37. Learn a New Skill
38. Make a List of New Experiences You Want to Try
39. Pick Some Flowers
40. Find Someone to Tell You How Beautiful You Are
41. Meditate
42. Watch a Sappy Movie
43. Donate to Charity
44. Do Your Makeup Really Nicely
45. Give Yourself a Foot Massage 
46. Paint Your Nails
47. Get Crafty
48. Scream into Your Pillow
49. Throw Jam at Your Wall
50. Destroy Bread

Good Luck at Relaxing Readers.  I know I need to.  I was having a particularly stressful day today.  I am flaring, but had class, so I went anyways because I have a personal goal.  So then, of course I felt miserable all day, but after class I had to walk to the pharmacy.  So by the time I finally got back to my room I felt so horrible and was a shade of pale that I didn’t even know I could get to.  So I took a nap, and the one time in months I’ve taken a nap the fire alarm goes off.  

Yeah.

Not a happy camper.  This flare needs to go away.  I need life to stabilize.  So I think what I’m going to do is paint my nails and watch TV!  Take my own advice and RELAX!! Wish you all luck.  

Linda RSD/CRPS, POTS, Fibro, everything else in the whole freakin’ world 

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