Let's Be Chronically Positive

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 

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

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

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

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

Those were my most intense fears.

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

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

So obviously, this is a huge problem.  

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

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

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

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

Today was an UP and DOWN day.  I feel the need to talk about it, so pardon this post since it’s probably not so much with the theme of this blog, but hey.

So this morning I woke up and I felt good. I felt like I was going to try to wear jeans. So I grabbed a pair of jeans, a pair that I haven’t really worn because all of my jeans have been too tight (I gained too much weight since being hospitalized in November and fit in none of my jeans) and the texture is too uncomfortable on my RSD legs.  Well when I woke up I couldn’t feel my legs except these little tingles (thank you Topomax) so I was going to try it.  So I showered, got all made up, did my hair, and then the moment came…..

They FIT!!! 

And even better.. I was able to handle them on my skin ALL day.  

Linda 1 RSD/CRPS 499

I also got a test back in a class I had to withdrawal from last semester ( I had to medically withdrawal because of being hospitalized) and I had a goal to do better on the test than I did last time.  Last time I got a 91%.  This time I got a 96% even though I ran out of time on the last question.  I was so happy. 

But then my third class of the day happened.  And my world came crashing down.  Since coming to college the worst I have done on an exam/paper is a high B.  I’m a 4.0 student.  I’m taking a history of modern philosophy course.  I studied for this exam.  I read the book, often reading chapters multiple times. I read the sparknotes to catch what I didn’t. I participated in class. I read the extra stuff. I did the study guide.  And I got a D.  Something that has never happened.  I have taken exams and never studied once and gotten extremely high A’s.  I’ve actually have never gotten a B when I haven’t studied. 

So of course I had a back-to-back so I get this test and immediately have another class and I’m awkwardly sitting there crying and the guy sitting next to me politely just minded his own businesses.  

So now my drugged a** is going to office hours tomorrow and is going to talk to him and ask him how to study and what to do because I will not let this class ruin my GPA.  I emailed him to confirm office hours are still tomorrow and I warned him in my email I might cry because with my meds I am in no condition to keep my emotions in check.  It’s embarrassing but true.  

So now I’m waiting in terror for an exam I took last Friday when I had just started this new med and words looked like they were in Arabic and I kept focusing on the dots in the desk metal. 

All I have is my intelligence.  And while these meds are so worth it because I’m not being tortured I am worried I am giving up myself in the process. I am losing all of me to this disease.  

Physical and intellectual.

Linda RSD/CRPS, POTS, Fibro

So since getting diagnosed and heading off to college I’ve been asked a LOT of bizarre questions. And I’ve been told a LOT of bizarre things. And I just want to share them with you because some of the things people have the guts to ask me just make me laugh.  Some of it is totally inappropriate and makes you think “Why would they say that?” so a disclaimer off the bat there.  Hope some of these make you giggle!

Just some curiosity….

“Do you even feel cold?”  

“Does it hurt you if I do this?” And then they poke me.

On the matter of being poked, one time my best friend said “I researched chronic pain and it said that people with chronic pain experience pain during things that aren’t supposed to be painful.” Then she pokes me and says “Like that.”

I have tremors, which means my arms shake. Comments regarding tremors:

     ”Shake n Bake”

     ”Are you saying good-bye already?”

     ”hand job?” 

Then there is the doctors of this world: 

“Are you supposed to take that many pills?” Well I wouldn’t take that many pills if my doctor didn’t prescribe it to me. 

“Would smoking weed help?” If medical marijuana was legalized I would so prefer that to the opiates I am on. 

“Do you think God is punishing you?”  I actually went through a phase where I thought “God” might be punishing me for not believing. I went to church every Sunday for a month, I went to everything extra I could, read the bible, and ended up almost dying of liver failure two months in.  If there is a God I don’t think he cares one way or another.  

“I know something that can cure that. Have you ever tried (insert name of some herb you’ve never heard of here)? It cures everything.”

Another thing I love (and I don’t mean that sarcastically, I think it’s cute, hurts like hell but its cute) is when people accidentally hurt me and then follow up by giving me a hug…which they know hurts me.  

And finally the big question everyone for some reason always asks me when they ask about RSD/CRPS even though it is so personal and absolutely none of their business

“Would it hurt if you were to like…have sex?”

Linda RSD/CRPS, POTS, Fibro

There are two things that I would like to cover with this day’s blog post.  

Topic Numero Uno

SO I finally found a medication that works AMAZINGLY.  Cut my pain nearly in half! But of course when something finally goes right I begin having side effects that are considered dangerous.  So I have to go back down and since my doctors don’t know what exactly is going on they are going to leave me on it per my request just at a REALLY low dose until I see them and they can make an assessment.  

I’m really tired of things constantly going wrong with my health.  I was having decent pain control before my hospital stint and ever since then things have been spiraling downward.  My flares are getting so bad when they happen that my back hurts.  This morning I was hurting REALLY bad (seriously though, that medicine has helped, just this morning was terrible) and  it was raidiating into my back and had me completely keeled (sp?) over.  

But whatevs. We’ll get it worked out.  I shall win!   On a bright note this consistent failure of life is getting me over my talking to my doctors on the phone issue.

ONTO THE NEXT ONE…

I’m terrified.  I am honestly terrified.  Of what you say? This blog. I’m terrified of this blog.  I’m also terrified of trying to raise awareness. 

I’m not afraid of those innately, but their repercussions on my life.  Are people going to think that all I am is RSD? Are people to see me as sick?  Are people going to think I’m weird because I’m trying to do this?

It’s scary. I’m worried that people think my identity is RSD.  In reality, it’s a part of my life.  My identity is a woman, a daughter, a sibling, a friend, a girlfriend, a student, a Sigma Kappa, a person who loves to argue politics, a carb-addict, a Grey’s Anatomy junkie, a future law student, a dog lover, a cat lover, a godmother to the most amazing little boy (in the sense of a role model), an atheist, a philosophy student, an Ohioan, a democrat, a book lover, and a support system.  

I’m just also all of these things and someone who has RSD. 

I am one of the few lucky people who have an amazing support system.  I have rarely come across someone who didn’t believe me and who didn’t realize that this was hard.  

But many of the people who have RSD are not that lucky.  And I am someone who has this support system and someone who has the ability to make a difference.  Doesn’t that mean I should?  

Raising awareness about being sick isn’t me holding a sign that says pity me.  It’s me holding a sign that says understand me.  Understand why I wince if you touch me.  Why I can’t touch ice.  And why besides looking relatively normal I have a hard time taking the stairs and instead take the elevator.  I promise I’m not just lazy! Understand why I limp and how some days I walk slower than a 90 year old women.  I’m in pain.  

And people need to know this is a big deal.  People who don’t believe that and has a loved one with RSD cause a lot of emotional pain to that person   

I’m going to jump into this.  And it will be worth it in the end.  

Because no matter what people think of me I know I will make a difference for the thousands of people suffering from chronic pain.

Linda RSD/CRPS, POTS, Fibro

Disclaimer: This was not written by me. Not sure who the author is but it’s SO relative to what we go through.

LETTER TO PEOPLE WHO DO NOT HAVE CHRONIC PAIN

Having chronic pain means many things change and a lot of them are invisible.

Unlike having cancer or being hurt in an accident, most people do not understand

even a little about chronic pain and its effects, and of those who think they know,

many are actually misinformed.

In the spirit of informing those who wish to understand,

these are the things that I would like you to understand about me before you

judge me….

Please understand that being sick doesn’t mean I’m not still

a human being. I have to spend most of my day in considerable pain and

exhaustion, and if you visit, sometimes I probably don’t seem like much fun to

be with, but I’m still me—stuck inside this body. I still worry about work, school,

family, my friends, and most of the time; I’d still like to hear you talk about

yours too. Please understand the difference between “happy” and

“healthy”. When you’ve got the flu, you probably feel miserable with it, but

I’ve been sick for years. I can’t be miserable all the time. In fact, I work

hard at not being miserable. So, if you’re talking to me and I sound happy, it

means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or

extremely tired, or that I’m getting better, or any of those things. Please

don’t say, “Oh, you’re sounding better!” or “but you look so healthy!” I am

merely coping. I am sounding happy and trying to look normal. If you want to

comment on that, you’re welcome. Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move.

With this one, it gets more confusing every day. It can be like a yo-yo.

I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. Please repeat the above paragraph substituting, “sitting”,

“walking”, “thinking”, “concentrating”, “being social” and so on….it applies

to everything. That’s what chronic pain does to you. Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room.

Please don’t attack me when I’m ill by saying “But you did it before!” or

“Oh, come on, I know you can do this!” If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute.

If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are—to be physically able to do all of the things that you can do. Please understand that “getting out and doing things” does not make

me feel better and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise or “do something to get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you know or think that I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, “You just need to push yourself more, try harder…”

Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain that you could ever imagine.

Not to mention the recovery time, which can be intense.

You can’t always read it on my face or in my body language.

Also, chronic pain may cause secondary depression (wouldn’t you get

depressed and down if you were hurting constantly for months or years?), but it

is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means I have to do it right now - it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something.

Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t.

It’s not because I don’t appreciate the thought and it’s not

because I don’t want to get well. Lord knows that isn’t true. In all likelihood,

if you’ve heard of it or tried it, so have I. In some cases, I have been made

sicker, not better. This can involve side effects or allergic reactions.

It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic

pain, then we’d know about it. There is a worldwide network (both on and off the

internet) between people with chronic pain. If something worked, we would know.

It’s definitely not for lack of trying. If, after reading this, you still feel

the need to suggest a cure, then so be it. I may take what you said and discuss

it with my doctor. If I seem touchy, it’s probably because I am. It’s not how I try to be.

As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot.

Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on

the body and the mind. It is exhausting and exasperating. Almost all of the time, I know that I am doing my best to cope with this and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general. In many ways, I depend on you - people who are not sick. I need you to visit me when I am too sick to go out…

Sometimes I need your help with the shopping, cooking or cleaning.

I may need you to take me to the doctor or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you and I do thank you for listening, it really does mean a lot.

Linda RSD/CRPS, POTS, Fibro

So today I talked on the phone to Jim Broatch.  He seemed very happy to talk to me and wanted to get my story and put it on the RSDSA website as well as an RSD parents website.  How exciting is that?  It’s real validation that what I do and accomplish every day really is amazing because I have RSD.

Many people don’t know about RSD and don’t understand it.  A lot of wonderful women in my support group has said how their family members or friends think RSD is not that bad and that those with RSD need to just get over it.  

Unless you have RSD you cannot understand, but the lack of information available and shoved into people’s faces (as with breast cancer, diabetes, ect.) makes it even harder for people to get how terrible it really is.

I think it’s amazing that people deal with this on a day to day basis.  I have had some experience with people underestimating how hard this is to go through, but most people give me a lot of encouragement and understand that all of this is a big deal for me.  Without those people I probably wouldn’t be where I am today.

So no matter WHAT is wrong with you, especially if it’s something few have ever heard of, try not to let it get you down.  One thing I’ve realized is that I don’t necessarily need people to understand.  Do I want them to? Very much so.  But I know how I feel about it.  I understand that this is real and bad and that my accomplishments are amazing considering my situation so I don’t need anyone else to.  I think that can be applied to anywhere in life.  You need to celebrate your accomplishments and if other people don’t see them well you still can have the satisfaction of knowing what you did for yourself.

Written by Linda RSD/CRPS, POTS, Fibro

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

One of the first things I learned as a kid was that it is rude to stare.

Many times I stared anyways.  And not because I was rude, I was just curious. 

So here I formally and seriously apologize to any person I have ever stared at.

I am positive I’ve been stared at before yesterday.  But I’ve never seen it.  Yesterday I hobbled into Walmart and a kid (he looked about 12) followed me with his head looking at my duck foot.  I have a limp! Have you never seen a limp before.  Gosh was it embarrassing!!! 

On our way out there was a little girl (guessing she was 6) and I got the same thing.  Man! These kids really know how to keep contact.  This one was so incredibly obvious my boyfriend turned around and said “It’s rude to stare.”

Now I know what an animal at the zoo feels like.  Poor lions, tigers, and bears.  

The reason I bring this up is 1. Parents, please teach your kids to not stare, and if they are going to to be stealthy about it. It hurts people’s feelings EVEN if they understand it.  and 2. We need to use this as starting a conversation.  If someone is bald immediately a parent knows “They probably have cancer.”  But for me, what do they say?  I have a sprained ankle? More likely “I just don’t know.”  But why don’t people know!! Once again I stress, there needs to be awareness. and 3. I need to just use the scooter when I hurt really badly.  People are going to stare at me and judge me anyways so I might as well.

I shouldn’t have shame in myself.  I am a young women. And sometimes I need help.  Who gives a rats ass if you think I’m just a lazy teenager?

The only thing that matters is what we think ourselves.

So I make a pledge that I am going to live life for what’s necessary for me and not by what is “correct”.

And for those who can’t understand that….then I hope you never have to.

Linda RSD/CRPS, POTS, Fibro