In Response to “A Letter to Patients”

Go read A Letter to Patients With Chronic Disease before you even finish reading what I’m about to say.

A twitter friend of mine Lisa sent me this a while back. I’ve read it at least a couple dozen times. Each time I read through it, it provokes a different reaction deep within me. At times, I’m thankful someone is willing to be so honest. At other times, I’m so angered by the brutal honesty of it.

Here’s what I mean:

Dr. Rob offers up this bit of information to chronic pain sufferers. He says, “You scare doctors”. My initial response is, “Well I hope so! I’m scared to. Even though I wouldn’t admit it to the outside world. Fix me!! Once I’ve calmed down, I realize this is helpful information.

Continuing on he says,

I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time

Often times, as a patient, I do forget that doctors are human. They are not a God or any other higher power. They all went to school, studied from books and all have their own opinions. THAT is important for me to remember. Just like members of my family, friends, or the guy in the grocery store staring at my cane; doctors all have their own opinions about my pain and fatigue.

So it makes sense to me that if I choose to push the negative nay-saying friends and family out of my life, what’s to say I shouldn’t do the same with doctors?

Dr. Rob also makes a point that doctors can’t possibly understand what your going through. Just like we have come to accept that the people in our daily lives couldn’t possibly understand our pain, we need to accept this of our doctors.

Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.

Makes sense to me.

Dr. Rob also goes on to list some helpful tips when interacting with doctors. I highly suggest you go take a look.

What I’m left with is this…my primary doctor, my MS specialist, the ER physician…is someone’s daughter, son, brother, wife, fiancé or father. They are just a person who set out in their life to help people. Then *I came along, not their typical patient. I screwed with everything they learned. I defied their books and challenged their knowledge of disease and pain. Why shouldn’t they be frustrated? I know I am.

Food for thought.

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I Need You to Understand

I’ve been neglecting this poor blog for a couple of days. It teases me as I contemplate sleep or writing. Neither of which I’ve accomplished much of in days. I wrote a post on my Autoimmune Facebook Page a few months ago. I asked for some input from other spoonies. I wanted to know what their thoughts were as well. The NUMBER 1 thing that kept repeating was how alone each and everyone of us feel. (Note:the page is no longer up and running)

Take this list into consideration when talking to a spoonie.

I know I “don’t look sick” but I am. That’s why it’s called an invisible illness

Yes, I tend to be unreliable. And yes, I feel guilty about it. I often bail on plans or avoid making them because I’m in pain or I’ve forgotten. I’ll avoid your calls because I feel so lousy.

I know that I have changed. Pain and suffering does that to a person. I may not be as fun to hang out with, but I am still a human being with feelings

I am not lazy. It takes every ounce of energy I have to make sure my house is clean and there’s dinner on the table. I’d much rather curl up in bed for days. And sometimes I do.

I feel guilty. Maybe because I haven’t seen you in weeks. Maybe because I’m to embarrassed to text you. I have nothing new to say. I’m still not physically well. I know you get tired of hearing that things are worse or there’s no change So do I.

If you ask me how I am doing, I’ll either lie to you and tell you I’m great or you’ll get every new ache and pain in lengthy detail. Be prepared. When you tell me “your looking better” or “your walking better” it’s because I’m able to fake it just a bit better that day. Who knew I was gonna be a great actress.

Yes, I know you experience pain. No, it’s nothing like what I go through. Take the worst flu you’ve ever had and multiply it by ten. Now imagine that it never goes away. There are no meds that help and you still have to go to work or take care of your children.

I lose the use of my hands. They get numb, tingly and when my brain tells them to pick something up they malfunction and I drop it.

I also lose my vision.

Noise causes pain. The bass from music, the buzzing on a tv, YOUR VOICE. It can put me in physical pain.

Showers cause pain. It feels like thousands of bee stings on top of sun burn. No, I can’t relax in a hot bath. Hot water puts me into a flare. Then there’s the possibility I’d be stuck in the tub.

Aspartame did not cause my disease. Diet soda did not either. Changing my diet won’t help. Ive done the detox and elimination diets. Exercising wont help either. I have a hard time walking. Don’t expect me to run or lift weights. I’ve tried.

Lastly, all I want is your friendship. I don’t want to be judged or told I’m not trying hard enough. I don’t expect you to understand my issues, I expect you to love me anyway. I want you to accept me. That’s what I ask of you.

Take for Granted

Lost in this cloudy haze/
Wondering if its just a phase/
Moments pass me by/
Leave me only asking why/

What’s the point of all this mess?/
Why am I in all this stress?/
Is there more to my life?/
I can hardly find the drive /

To push on through/
Like you all do/
Takes more from me/
Than you’ll ever see/

A simple task you take for granted/
A healthy life you were handed/
Nothing is the way it seems/
My inhibitions haunt my dreams/