Let's Be Chronically Positive

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.

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.

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.  

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

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

Hey ALL! I need some DISTRACTIONS!! I’ve gone into an UBER flare. I realize that most of you don’t know what a FLARE is…so I came up with a way to describe RSD pain to you.

     Level 0. None—> This is RARE/NEVER happens when you have RSD. So HA.  Hahaha.  Pipe dreams.

     Level 1. Normal—> This is my normal or anyone else’s baseline. For myself, I can handle it pretty well and it goes on in the background.  So basically, I’ve gotten used to it.  If I focus on it, it hurts like #$$%@#$@@, but if I don’t, I’m okay. For example: I can wear jeans and I don’t need any help doing day-to-day tasks.  It’s all good.

     Level 2. Annoying—> This is when RSD has decided it wants to, pardon my language, fuck with you.  This is when every so often it goes back-and-forth between “normal” and throwing out a knife stab here and a tremor there.  Not enough to have you in full agony, but enough to remind you that you have RSD and it is waging a war on your body.  

Level 3.  Holy Crap—> This is the first level that is officially called a FLARE. This is when the pain has become heightened and is instead of just being annoying RSD is constantly going “LOOK AT ME! LOOK AT ME!” You can possibly withstand doing some things, but not for very long amounts of time.  Pain killers might help, so you can still take care of yourself in this level and still are a functionable human-being while a miserable one.

Level 4. Please Allow Me to Make It Through This—>  This is the current flare I am on right now! This is where you can barely function at moments because you are so distraught by severe pain.  I’ll try to describe this to you: Right now my sides feel as if they are being twisted inward and crushing my organs and my back and side muscles are causing me to curl inward.  My right leg feels as though it has knives running through it that are on fire. My left foot feels the same but the rest of my that leg feels crushed under a truck…a very heavy truck.  Typing this is taking a long time (and the only reason I am doing it is to keep myself distracted in a fun way…boring ways are REALLY hard to focus on) because my hands are curled in because of contracture.  My arms feel as if they are just burning away however if you were to touch them or my legs they are ice cold.  I am currently a purplish blue shade and periodically keep having muscle spasms/tremors.   Touching anything makes it worse…even the air makes it worse.  I had to go get food and that was painful.  I went to my first two classes today because I was having anxiety about missing class and the wind was making me scream on the inside.  That is how level 4 feels. 

Level 5.  Kill Me Now (Not Literally)—> This level is when it is so bad you cannot stop yourself from screaming.  This has happened to me a few times.  As a chronic pain patient you develop a very high pain tolerance…you have to in order to survive.  So this will actually be very rare though it does happen.  

RSD is the most painful chronic condition known to medicine according to the McGill Pain Index (MGI).  RSD is more painful than childbirth.  I’ve never squeezed an infant out my vajayjay but I imagine that without painkillers that has to hurt pretty bad.  This is just one way for you to get an idea of what myself and at LEAST 200,000 others go through every day.  Another is to think of the pain cancer patients go through.  RSD is more painful than that.  I was watching a documentary yesterday that surprisingly has RSD featured in it.  The woman who has RSD, a former Today Show host, has it in her head and she said that her doctor told her RSD patients will get voluntary amputations in order to avoid living with this pain forever.  

Anyways, I hope this gives everyone some perspective and I hope that this inspires you to raise some awareness for RSD so hopefully we can find a cure!!!  If you would like to donate some money you can do so here.  

So for those of you with chronic illness what do you do to distract yourself when you feel unwell?

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 

Last Thursday, I went to check my mail and as I looked through the tiny glass window into my miniature mailbox I saw the little orange package slip.  My heart dropped.  It was finally here. 

I had known my cane was coming, and as much as I had come to accept it, I was still mortified.

Twenty years old. Cane.  Those two things are not supposed to go together. 

My boyfriend and I were going to walk around campus so I could practice walking with my new device so the first day I really needed to use it I wouldn’t look like an idiot.  I was super nervous and afraid of people staring at me more than they already did.  I was afraid of what people would think.  I was mostly afraid of what this would mean: I am admitting my weakness. 

But then I found out something I had not expected.  This device gave me something amazing.  It reduced my pain massively.  It increased my function massively.  I could walk faster, farther, better.  It made my right AND left foot hurt less.  Using it I’m more independent because I am able to get around without worrying about falling.  My left arm is a lot more tired, but the cane helps compensate for what my legs cannot do.   

I also found out that people will still stare.  They also become a lot nicer.  Prior to the cane people could see I had something wrong with me.  My foot is twisted about fifteen degrees?  I don’t know exactly.  I walk very slow and with a serious limp.  I often use tables or chairs to hold onto as I walk.  People stared.  But now that I have this metal stick people all of a sudden are polite.  They open doors, hold the elevator, offer to let me go first, move out of my way.   It’s miraculous what a device will do. 

It bothers me that people do it, as I want to be independent and quite frankly I don’t want people to stand there when they see me coming from twenty feet away and hold the door open for me.  I can get it myself.  I’m just a normal person who needs help walking. 

I decided to use the cane all the time instead of just bad days because it helps so much.  It lowers my pain a lot.  It’s an adjustment, and I still get nervous when people see me, but it really does help.   For the first time in months I have been able to go on a walk, just to enjoy being out in the fresh air.  I am truly enjoying it.  I feel better, I’m sleeping better, and being able to get around is really nice.  Last Saturday, I went to a park and enjoyed the fresh air.  I saw the old remains of the Erie Canal.  It was wonderful. 

Even though things might seem terrifying, and they might seem like they are not for you because you are young and beautiful (let a girl pretend) it can make a significant impact on your health.  Screw what other people think and do what is best for you.  We are a lot stronger than we give ourselves credit for.  Every time I go through something new, whether it is a new medication, a new procedure, or something like getting a cane, I always forget how strong I really am.  I was terrified and I ended up soaring.  So remember: You are a vagina.  You are precious and delicate, but man, you can take a beating and are strong enough to do what you need to do*.

Linda RSD/CRPS, POTS, Fibro

*” Why do people say ‘Grow some balls’? Balls are weak and sensitive! If you really wanna get tough, grow a vagina! Those things take a pounding!”  -Betty White

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.