Let's Be Chronically Positive

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!

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?

The movie Catfish is about a guy who is in contact a family who has young girl that is a painter.  He frequently corresponds with her and receives paintings.  He talks to her mother often, and eventually romantically speaks with her sister.  Then things get fishy.  Facts aren’t lining up, so he and his friends decide to take a road trip and drive to where the family and surprise them.  Almost all of the communication has happened over Facebook and over the phone.  

Spoiler alert! As the movie goes on they come to find that the young girl doesn’t paint, and the sister is actually the mother (yes, he was having phone sex with an old woman).  

The sad fact of it is that in the age of the internet, anyone can be whoever they want while online.  They can be whatever age, whatever name, and they also can have whatever disability.  

In my online support group, RSD United (woot! woot!), this was a topic the past two days.   One thing too many of us know that people will often fake chronic pain or another ailment to get prescriptions for painkillers, muscle relaxers, and anxiety meds.  This fact is in the headlines whenever a famous personality dies of an overdose.  Remember Whitney Houston? Michael Jackson?  Anna Nicole Smith? As an RSDer, I have no freakin’ idea why ANYONE would want to take this stuff because I am so tired of being disconnected from the world all the time.  Side effects also are not fun (feeling like you’re floating=not my idea of a good time) and if I were to not get the benefit of pain relief, they wouldn’t be worth it at all.  But people STILL do it.  

                What’s even more screwed up is that people will actually go to CLASSES, yes, CLASSES to learn how to do this.  Todd R., a pharmacist and RSD patient, had a regular at his pharmacy with fibromyalgia and RSD (or so he thought) that asked him to sit in on her support group/class.  This is what happened:

So I sit in one of the classes. It seemed legitimate at first, but then I saw the game. The nurse was teaching the patients how to fake injuries and symptoms. What keywords to use and to avoid with the doctors and at hospitals. She used an ice cup trick to cool her skin and cause discoloration [key symptoms of RSD]. Then she went over the pain scale cards; the horizontal line and smiley sad face ones. She showed local hospital protocols on and how doctors are to treat the patients. Score a 1 to 4 to get drug a, 5 to 7 to get drug b, then 7 to 10, get drug c. She told the patients never go above 7 or 8 or it will throw a flag. It’s why now most hospitals use Toradol for chronic pain. These scales are compromised and flawed.  While in pharmacy school, DEA showed us forums how people manipulate this paperwork. You can Google discussion forums on how to use all of the knowledge against doctors. Final thing in the group, they had community pills to share so they could take to doctor and show proper count. That is when I left.

People can go to classes to learn how to fake these things, but not only that, but we live in the TECHNOLOGY age.  The second I get a new prescription what do I do? Google it.  When I was in the hospital and they told me I had POTS, what did I do? Google it.  When I am watching My 600 Pound Life while eating Dunkin’ Donuts and I hear the term “Guille-Barre” what do I do? Google it.  So if I wanted to pretend to have Reflex Sympathetic Dystrophy what could I do? Well, isn’t that easy… Google it. 

And you know what else, we’ve got this amazing thing: Facebook.  It connects us with our family, friends, that cousin we are slightly embarrassed of (oh, hey Josh. Just kidding).  But seriously.  I could literally be anyone.  You may think I’m a twenty year old, BGSU student.  But really, I’m a 46 year old trucker from Utah.

There are support groups out there, who can make a profile of someone like me, who can research diseases like this, and come up with nifty ways to cheat the system, find the best doctors, come up with awesome stories of how I injured myself (getting stepped on at Prom is a pretty epic story, is it not?). 

This is bad because when this happens it ruins the integrity of those who have RSD. 

Ever notice that it’s not cancer patients who get discriminated against?  It’s people who have diseases like RSD because people fake chronic pain in order to get prescription medication. 

So what can you do?

Well first I think it’s important to cover what you shouldn’t do.

If you think you have figured out that someone online is either an addict of faking a diagnosis you should do ABSOLUTELY NOTHING.  You should keep it to yourself, and tell no one.  This is because you could be wrong.  You could misinterpret something you’ve read.  And if you say something, because you do not know this person in real life, you could ruin their life forever.  This could leave them doctorless and literally tortured.  That is a mistake that is absolutely not worth making.  If this person is really an addict, doctor shopping, or abusing the system some way or another eventually they will hopefully get caught.  But it is NOT your job to do so.

What you can do:  Be careful about what you say.  Do not answer questions like:

What doctors in this area don’t mind prescribing those harder painkillers?

Or

What can I say to make sure I get drug/disability?

Or

How can I exacerbate my symptoms so the doctor will take me more seriously?

These are not okay!!!

Also: NEVER, I repeat, NEVER offer to sell your old or un-used pain medication to someone, and if anyone ASKS you for it never give it to them.  If someone asks you for it, it may also be helpful to keep documentation of this just in case in the future it becomes necessary to prove you said no!

Another thing I think it is important to note: not everyone who is an addict is a faker.  There will be people who have REAL pain and REAL illnesses that develop addictions.  That’s the nature of these medications.  Just as some people who drink a lot of alcohol do not become alcoholics some do.  These people need help, not to be chastised.  But they also do not need to be supported.  They do not need to feel alienated, but you shouldn’t tell them what doctor to go to if they want an easy prescription.  You shouldn’t sell them your excess medication.  You should point them in the direction of help and offer them support.

It is not our job to be the law, and the amazing thing about these support groups is they give us an amazing group of people to vent to who share our same struggles.  They give us a group of people to stand by our side through thick and thin.  There is always a chance someone could be going through a hard time, yes, it’s true.  I feel we should love everyone equally and that it is not our job to judge.  All we can do is protect ourselves and not feed their addictions.  Following those simple guidelines will help keep online support groups a safer place as well as help preserve RSD sufferers reputations.

Also, keep in mind that these are rules for ONLINE.  If you or someone you know in your personal life that is struggling with drug addiction I urge you to contact:

24houraddictionhelp.org

Linda RSD/CRPS, POTS, Fibro

Please keep in mind that I do not have a degree and that I am totally basing this off logic and 20 years and 2 months of life in Ohio.  If it counts for anything I have a Sophomore’s worth of schooling in the major of Political Science at BGSU, but it is a public college….so take that as you may.  I have a 4.0, so that’s got to count for something.

Life changes in a second.

A moment.

A heartbeat.

You go through life expecting everything to be normal.  You go throughout your day with all the mishaps and the setbacks and the simplicities that bring you to the moments that change your life forever.

The moment you are on the dance floor.

The moment you are sitting in the cafeteria.

Today, a school that many times I have trash talked from the safety of the football stadium, have screamed my ass off at and have hated—merely because they were our rival, experienced a horrible and life changing tragedy today.  The loss of one student, the trauma of many.

In a moment the lives of not only these students, but those who ever led a life that thought “things like that happen to other people, in other places” that lost their innocence.  Manys sense of security was nullified by five bold bullets at the hands of a child whose innocence was lost long ago, and whose maturity never arrived.  

Let us all take a moment for Chardon High School.  May your rivals become friends.

Beyond that.  We have these moments that change our lives.  We look at every moment leading up to it.  What could have changed? 

What if there would have been no traffic or if I would have decided to instead get my hair done?  I’ve wondered if I would have sat down during that song if everything would have turned out differently.

We cannot get caught up in the “what if” situations.  Analyzing the impossibities does us no good.  We must move forward and plan the possibilities.  

Especially when the trauma is new, the path ahead may seem overwhelming and terrifying.  Sometimes it is easier to look into the past in order to avoid the future.  The first step to recovery, which is a well known phrase, is to admit you have a problem.  In many ways this is true, and by looking towards the future you do just that. 

Take things step by step and day by day.  You do not need to plan out what you’ll do for the next five years.  Plan out what you will do today.  Will you make an appointment with a doctor? Will you try to go in the pool and work on flexibility? Will you make sure you eat healthier?  Whatever it is you do don’t overwhelm yourself.  Overwhelming yourself is the easiest way to put yourself farther back than you were when you started.  

For me, this is where my problems tend to lie.  I’ll wake up in the morning and I’ll feel pretty good.  So I’ll put on jeans and a nice shirt.  Clothes have been a big problem for me lately.  My skin is just not having it.  So after my first class I am dying.  The textures against my skin cause a burn that I can’t put out and I am miserable.  So I’ve overused too many spoons.  [see The Spoon Theory @ http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/] 

And it’ll only be 11:30AM.  So yes, I wear yoga pants EVERY day.  So I compromise and do my hair and make up every day.  It takes me a long time since my hands do not work like they should, but as a young women I want to look nice, and I cannot do that with my clothes.  This is how I have come to handle my problem.  Though every once in awhile, like today, I still want to try and wear jeans.  

Some last minute tips:

If you have RSD remember this tip: The bigger the vacuum the louder it is.  The louder it is the more it hurts.  I learned that the hard way a few days ago.  Almost threw up from the pain.

This one is really for anyone, but super applies to people who can’t be touched, like me. Children do not understand pool ettiquite and will hit everyone and anyone in the pool accidentally.  It is your responsibility to stay out of a child’s way, not theirs.

This important for meat eaters: MEAT HAS POOP IN IT. 

Linda RSD/CRPS, Fibro, POTS

So as you know I am trying to raise money for the organization that promotes awareness and understanding of Reflex Sympathetic Dystrophy/ Chronic Regional Pain Syndrome.  WEELLLLL…This morning I was on my computer and an email came up from guess who???

Jim Broatch, the executive director of RSDSA.

The email essentially said that he heard about my fundraising and asked if there was anything he could do to help. And if I had CRPS.

I told him that indeed I did in all four limbs and that if he had a mailing list that would be great.

He told me he couldn’t do that but asked if I could CALL HIM.

Me, a twenty year old college kid who is just trying to make a small difference, was asked to call HIM.  

I think this is a big deal. 

Sadly, I had to go to class and I told him that and he asked me to call tomorrow.

So people I think this is a big sign that a small thing can go very far!  So please DONATE.   

Here is the link again, and you can also access it on the Donate page up top where all the links are.

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

On another note, I started a new medication today.  Usually my meds, very luckily are at the most $2.  This one…

FIFTY TWO DOLLARS!!

Being sick is so incredibly expensive.  And not only that these pills are HUGE.  Emphasis on the HUGE part.

At the end of the starter pack my total pill tally for each day will be:

6 in the morning

17 in the evening 

For a grand total of 23 pills a day.

The side effects for the new one were actually kind of fun but will probably make me a zombie once I get up to my full dosage.

But today was a good day. I made it to classes.  I got the honor of being thanked and talked to by an important person.  And the donation total is $25. That’s a lot more than $0. 

Posted by Linda RSD/CRPS, POTS, Fibro

There are a lot of posts about people who do great things.  Who live amazing lives.  Who have been through hell and back and are a great inspiration to others.  I am not really any of those things.  

In a lot of ways I am a normal girl.  I am a sophomore at Bowling Green State University.  I am majoring in Political Science and minoring in Philosophy.  I have been involved with New Student Orientation, Hall Council (my Freshman year), and as well as getting involved with a lot of community service.  I am a proud member of Sigma Kappa Sorority.  I have been on the Dean’s List every semester I’ve been at BG.  

I am of average weight, I’m of average looks (no serious facial deformaties or hair where it shouldn’t be), and I am blonde. I look normal. 

I’m not what you think of when you think of someone chronically ill.

Personally, I imagine someone bald (it’s a cancer thing), someone extremely frail, and someone who is in a wheel chair.  I make it a habit to stay out of wheel chairs.  

But I also am, and I say this in the most straightforward way possible, incredibly screwed when it comes to my health.  

I live with multiple chronic and debilitating health conditions.  Some days I am physically unable to get out of bed, unable to walk, unable to stand.  I fall like an old lady.  Stairs are honestly part devil.  I currently take upwards of 20 pills a day.  No matter what day it is, I am always in a lot of pain in all four of my limbs.  That includes when I’m sleeping, when I’ve had massive amounts of painkillers.  It doesn’t include when I’m drunk, however, I’m not allowed to drink so that is besides the point.  

I have had upwards 20 procedures in the past 2 years.  I have taken what feels like a hundred different medications, and realistically it has probably been that much.  I have had devices put in me, skin taken out of me, and I’m also a participant in two different studies.  

I can’t touch ice (what a great excuse to have people get my ice cream for me and not take the dogs out in the snow).  And I swell, so sometimes I look really funny. 

My life can get pretty depressing.

But there are also marvelous things about my life.  I don’t stress over exams, because I have bigger things to worry about.  I know what my priorities are (get good job, get good health insurance) so I’m a lot farther ahead than most people my age.  I have an excuse to be lazy when I really don’t want to do something (though I don’t apply that to school/work…usually).  I am driven to do the most in this life that I can because I don’t know what will happen next.  With me problems are not if’s but when’s.  So I appreciate the little things in life a lot more than other people do.  I know what I am looking for with a guy because I need someone who won’t run away the first time I swell up like a blueberry, and am unable to do my hair/make up/ shave my legs/ walk/ start screaming.  I found him.  And I think that if I didn’t have all these problems I may not have him and I also may not know exactly how amazing of a man I do have.

I don’t waste my time on things that can screw up my life.  I take my academics very seriously (4.0).  And I also am studying something I love.  Life is too valuable to waste on something you hate. 

So this blog is not to talk about the bad, even though sometimes that may happen, but it’s about the good and that you can be really sick but also have a normal life.  It’s anecdotes that will help people who are not sick how lucky they have it, but I also hope to get more awareness and understanding.  I am not the only one with RSD. And though I have a really bad case, there are people who are far worse than me.  There needs to be more awareness and research done on RSD because people who have it are not at all understood.  

So thank you for reading this.  Suggestions are welcome, however, I’d prefer if all negative comments are kept to yourself.  I realize that some people will take this differently than it’s meant.  But that’s life.   

Enjoy Reading.

This post is by Linda who has RSD/CRPS, POTS, Fibro