Let's Be Chronically Positive

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 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

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.