Let's Be Chronically Positive

Hello Readers!

My hiatus is officially over and done with! My job is done and now I actually have time to write.  I was so busy these past few months between work and school I did not have any time to keep up with the blog and that was not fair to my readers.  Now I’m here and ready to give you my full attention.

So an update on my life as of recent:

These past few months I worked on an election in the great state of Ohio for Democratic Senator Sherrod Brown.  He’s an awesome man and it was an amazing experience.  I am so grateful for the opportunity I was given to internship for the Ohio Democratic Party and the opportunity to have been hired on.  It was once in a life time. 

As for my body when it came to that: It held up! Mind over matter. There was a lot of physically taxing work: long nights, long hours, and physically demanding work.  No sick days.  But my body held up.  I was able .  

On another note—I recently adopted a dog with my boyfriend Shawn.  Did I mention I entered a relationship? Well I did. And he’s an amazing man. I finally found the right kind of person when it comes to dealing with a chronic illness.  Someone who is supportive—but hands off.  Someone who has been through the ringer with tough things in their lives so they can empathize with what I’m going through.  Someone who is incredibly optimistic. He is a great man.  

So enough with the updating—let us get along with the post!

In Let’s Be Chronically Positive fashion I want to end this post with a lesson.  Today’s lesson is….drum roll please…

HANDICAP PARKING PASSES AND SNAP JUDGMENTS

If you were to look at me at this time of year wearing boots and a jacket this is about what you would see:  a seemingly healthy twenty year old women.  I do not limp much when I walk.  I look very healthy if you quickly look at me.  

Now if you were to actually know me you would know: 

 1. I do not limp much because BOTH legs hurt, therefore limping does not do much.

 2. I have a slightly deformed foot.

 3. I have the most painful disease known to medicine in 75% of my body.

 4. I have a heart problem that can cause me to pass out with over exertion.

My point: We tend to judge people who are seemingly healthy and deem them not sick enough to need a handicap parking pass.  But just because they are not walking with a cane, do not have a wheel chair, or are young does not mean we can assume they do not need their pass.  

The only time you should EVER judge someone or say something to someone about parking in a handicap spot is if they park there without a pass.  That’s just wrong.

So keep that in mind.

I’m glad to be back! 

Linda

Today sucks.  This week has sucked.  

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

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

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

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

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

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

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

Linda RSD/CRPS, POTS, Fibro, other

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

Today’s a popular day for Let’s Be Chronically Positive posts! I’m glad my co-blogger Katie wrote today. It’s been awhile and it makes me rather happy.  Katie, you are an amazing woman and I would absolutely love to get to know the real you.  And who cares about normal.  I’m not normal and I’m pretty damn awesome. 

So Anyways. Onward.

Linda’s topic for today: the ever looming cane.

So, yesterday, I finally made the purchase of The Aide. I found that canes are actually pretty dang expensive so I bought it online. So now I’m waiting for it to come in (should be here Thursday) .  Actually, them.  Them to come in.

I couldn’t decide if I wanted to get pink or black.  

Pink is my favorite color, it’s feminine, it’s young.  I am twenty years old, and if I’m going to be using a cane I might as well have one that is cute and young, correct?  

But then I was thinking I should probably go with black.  Black sticks out less.  Black will match more clothes.  I’m a twenty year old with a cane…people will already stare enough.  I don’t want to scream “Look at me.”  

Well, then, at the suggestion of my Aunt, I decided to go with both.  I got the pink for “most” use.  I don’t plan on using a cane ALL the time, just on the bad days (okay, I do realize this is most of the time, but let a girl have her hope).  I am twenty, and people already stare at me enough.  I might as well have a pretty cane for them to stare at, too.  I also got the black for when pink won’t match.  It also folds up, so on my good days I can bring it with me and have it for if I overwork myself.  This way I will ALWAYS be safe.  

I’m terrified.  I’m terrified of seeing people and them not understanding.  I’m terrified of the thoughts like “You didn’t use a cane yesterday, but you need one today?”  Or “You needed a cane yesterday? But not today?”  Not everyone reads my blog and knows I have Reflex Sympathetic Dystrophy which is a progressive, neurological disease that varies from day to day.  Some days I’ll need it, some days I will not.  But instead, I’m worried people will just judge.  

I know that’s silly.  There is an eighteen year old woman, Brooke Dutridge, whose mother is a part of some of the support groups I am in.  Myself and her have a lot of similarities.  She has RSD full-body.  Mine is in all four limbs.  We both have dysautonomia (AKA problems with our autonomic nervous system).  Her mom and I were tentatively planning a time for me and her to meet so I could talk to her and let her know that despite having RSD she can go forward and go to college and be independent.  Or at least to just give her someone who is older and has just gone through everything she is going through.  Even though I have yet to meet her, I feel for her big time.  She is in her senior year of high school at Sylvania Southview High School.  I remember my senior year of high school, and spending so much of it at home.  I felt so incredibly alienated.  Well, today her mom commented on one of my posts in the support group saying that her daughter uses a WALKER.  Not only that, but she USED to be in a wheel chair.  This young woman, who is already going through so much and is at a time in her life where even if she didn’t have RSD she’d already have trouble fitting in (though from pictures I’ve seen she’s beautiful, and I only mean that as in high school sucks for EVERYONE, not just those who are sick like us) and she is willing to use a walker.  And I’m afraid of a cane.  Not only that, but she’s had RSD since she was 14.  I was diagnosed at 17.  So she’s been dealing with this for a much longer time.  

<——That’s Brooke. 

I am a strong woman, and I am a fighter.  But when it comes to using an aide I’m a baby.  So I’m going to be strong like her, and I’m going to look up to her.  

So the point of this post: People aren’t going to understand.  But who cares?  You can be strong.  You just have to get in the mindset.  So get in HER mindset and be a freakin’ warrior!!!! 

I know this is for the best, but it’s an adjustment.  But I am a strong woman.  And I am a fighter.  

Wish me luck!

Linda RSD/CRPS, POTS, Fibro

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

On Spring Break most college students will be heading to the beach and partying it up.  Last Spring Break I spend going in and out of the hospital.  

I made myself a promise that I would go somewhere southern and nice for spring break. I would get out of Ohio.

And of course I will be spending it in and out of the hospital.

I’ll be getting sedated and having a nerve block, seeing another specialist, and getting a CT of my lung to make sure I do not have lung cancer. 

This is okay.   Personally I would at this point prefer to be doing things that make my day-to-day life more comfortable and to confirm that I indeed do not have a malignant tumor and that it is benign.

This may not sound like a good spring break to any of you that are not chronically ill.  And it really isn’t by definition.  But to me, and probably to many people who are chronically ill, doing things that will make your life a little easier for longer than a week is a great thing.

So this Spring Break I am not going to think of all the things I could be doing, but be happy that I have good health insurance and am able to afford the things that are needed to make my life livable.   I could be so worse off.  I could have all of these things wrong with me and be really poor, or live in a country that doesn’t have great doctors.  I could not have any health insurance so I’d be unable to get treatment at all.  This could of happened to me at the age of 30 and I could be supporting children and my world would stop.  At least now every decision I make I only make if I know I can do it.  

Things could be worse.  

Written by Linda RSD/CRPS, POTS, fibro

So tonight I’m going to a Potter Party.  And I was thinking about how so many people relate to Harry Potter.  And I realized that’s because Harry Potter and his fight against evil (Voldemort) can be a symbol for any struggle we go through.  So here is how I compared Harry Potter to mine:

Harry Potter: That’s me. I’m fighting to defeat the evil villain called Reflex Sympathetic Dystrophy.  We feed off of each other.  I cannot kill it without killing me.  Remember the saying “Neither can live while the other survives” I think that applies right here.  I can’t have a fully functioning life without RSD but since I AM fighting it cannot take me over and be free.

Voldemort: This one is quite obvious, it’s my disease. Reflex Sympathetic Dystrophy.  It’s evil and it causes pain to thousands of people.

Ron: This would be my support system.  They aren’t the smartest all the time, and they aren’t always right, but they are always there for me and are brave when they need to be.  I mean it takes someone brave to be willing to hold the hand and be the companion of someone who suffers.  Thank you to my Rons by the way. This is my friends, family, teachers, and sisters. 

Hermione:  The smart person who always uses their intellect to help you when things are at their worse?  My doctors.  Fighting Voldemort takes more than just the patient, it takes a team.  It takes Harry, Ron, and Hermione.  If I had given up then my doctors can’t do anything to help anyways.  It takes us all. Thank you Drs. Hayek and Chelimsky.

Magic: My medications.  They do things that my body can’t do on it’s own. They help give me slack in the areas that I am lacking.  But just as with magic it’s not always perfect and it takes smarts to be able to figure out just the right amount.  

Dumbledore: Dumbledore is Harry’s support and his mentor: a wizard who has fought evil in the past and understands when things are hard but also that you need to continue doing them.  I would list these as the members of my online support group RSD United. 

Dumbledore’s Army/Order of the Phoenix: These are the medical personnel who have helped me that are not specifically my doctor.  These are the nurses who have calmed me down before my procedures.  An amazing nurse who helped bring up my spirits when I was in the hospital.  The pharmacists who don’t screw up my medications. 

Linda RSD/CRPS, POTS, Fibro

Dear (insert disease here):

When you entered into my life you were like a tornado that quickly sneaks up on a small, but vibrant town.  I was metaphorically a town full of sleeping people who were unable to see the disaster that was coming ahead.

Then you hit, and I thought that it was going to be damage I would quickly recover from.  Then my life went from a decent dependable vehicle to being totaled.  Unlike the vehicle though, my body cannot be replaced.

Being chronically ill is probably one of the worst situations.  I have zero control and unlike an abusive husband, an alcoholic father, or poverty I cannot run away from it.  I am in no way saying that those are not horrible, horrible situations that are hard to leave but unlike those I have no possibility of leaving.  That eats you up inside, knowing you have zero control over your day to day activities.

Also, unlike many pains that we suffer from as human beings you are constantly on my back (both metaphorically and literally) and deeper than my skin.  You’re to the bone.

There were many options that I had at my diagnosis.  I am not referring to medications or procedures or treatment plans.   I could either be angry; I could be depressed; I could be positive.  Initially, I was angry. I was also sad.  I felt as if you were a death sentence.  

I needed that time.  Without it I do not believe I would have reached this point of acceptance and being positive.  Now I can truly be positive because I realize I don’t need to be positive all the time.

I write you this letter to illustrate to you that we are no longer opposing forces.  It is no longer body vs. disease.  It is body along with disease.  You cannot be cured, so we might as well just accept each other (so if you could please stop doing that thing to my arm I’d appreciate it).  I have learned to live with you.  The keyword of that sentence is live.

I am living.  I am living with chronic illness.  

And life is beautiful.

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