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/

That Sinking Feeling

You know that feeling you get in the pit of your stomach? You know, the one that instantly washes a wave of dread over you? You might sweat a little, hold back tears or look around to see if anyone else notices…it’s that feeling you got when your high school sweetheart was in the midst of trying to break up with you. The feeling right before a car crash or even when you hear, “we need to talk”. Have I made my point?

Well, I got that feeling today. It happened when I dropped my 4 year old daughter off at preschool. Waiting to go inside, another boy showed up. Normally, this is great, another kid for mine to talk to. The problem was what this sweet little 4 year old boy held in his hand….a puppet.

How, do you ask, did I manage to feel like I was going to vomit over a hand puppet Well, I’ll tell you.

It was puppet day at school, all the kids were supposed to bring their own hand puppets and I forgot. All I could picture was the look on my precious girls face when every one brought out their puppets and she was left without one. How that must feel.

I wanted to cry for her. I wanted to drive the 40 minute round trip drive to get her puppet. I wanted to ask the teacher to change puppet day to tomorrow. (Cause that’s logical, right?) Instead, I hugged her tight and told her that the teacher would have a spare one for her. She kissed me and skipped happily into class. Not phased at all.

Sometimes I forget that my lovely little princess is only 4. Not yet burdened with feeling “unpopular” or like she doesn’t measure up if she doesn’t have the coolest toys and gadgets you can buy. Let me get my therapist voice ready. I’m assuming I get this feeling from the things that happened to me growing up. The need to fit in still buried inside me waiting to unleash its ugly head. Waiting, to make sure my baby girl gets the best so that she never gets that feeling in her stomach.

Here’s the thing, if I can instill in her NOW that what matters most is her family and the love we have for her, then maybe I can stop what I so often witness in others. Stop the amount
of value we often put in material things. Stop the bullying and feelings of insecurity because we don’t have the best of the best. I want my daughter to know that she doesn’t need the iPhone 3000 just because everyone else does. That if times are hard, no matter what she has me.

It may take a while for this ugly, sinking feeling to get out of my system. But I vow to keep it out of my baby girls as much as I have control over.

I also vow to try and forgive myself. I do have fibromyalgia and I do have a ton of other medical issues. I can’t always be perfect. I will forget hand puppets, picture money and permission slips. It’s inevitable. I still love my girl and would do anything for her. Even if its as illogical as asking her teacher to switch a project date. 😉

In Light of Celebration

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It’s May 12th which means two things to me this year; Mothers Day and Fibromyalgia Awareness Day. Both of these have played a huge part in my life. One a little ok a lot longer than the other.

My mother and I have had a relationship that goes beyond words. Like any good, great rather, mom she has been there to lift me when when I’ve fallen. She has wiped away my tears, she’s encouraged me to try new things and given me the occasional “cowgirl up” speech.

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Things have changed drastically for both my mom and I in the last year. I won’t go into detail, mostly to respect her privacy but also to save myself (and maybe you) the tears. Our relationship has even changed, I believe for the better. My mom has been the one person I can depend on through life. Whether it be a breakup, losing a job, dropping out of college, another break up, becoming a mother myself, yet more breakups and now my health, she has yet to leave my side.

I pray that I’m half the mom she is. My daughter’s father and I had separated when she was about a year old. I never really did get to celebrate Mother’s Day. No flowers or cards, breakfast in bed or thank yous. Nonetheless I was grateful to have my lil princess just call me mommy.

With all of that being said, I’m brought to the fibromyalgia part of all this. I was diagnosed with FM a year ago. However, I believe I’ve had it since around age 14. (I’ll save that for another post). It makes life and motherhood extremely difficult.

There isn’t much literature on FM. There’s a monster list of symptoms and no cure. Doctors don’t know what causes it (though there are theories) and there’s no definitive tests. Some doctors and family members and friends don’t believe it even exists.

I’m here to tell you FIBROMYALGIA EXISTS. We need to raise awareness and find a cure. People, just like me, suffer every single day of their lives. It’s time to put an end to the judgmental looks, hurtful comments and physical pain.

We have voices that need to be heard and faces that belong to this invisible illness. It’s time to fix this!

LETS CELEBRATE LIFE TODAY

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Finding the New You

I’m choked up on my words before I even begin to write. I find I’m still emotional from my post earlier today. It had been 6 years since I had written something other than poetry or a song.

My post about dealing with chronic illness seemed to be received well. I’ve sat for hours contemplating what to write next. My hands aching to pick up a pen. My mind racing with ideas that never form a single complete thought.

Now, I’m a Gemini so I’m used to having scattered thoughts. But as my illness take over I’m finding more of them scattered farther out. I had a conversation with a dear friend of mine who said she thinks of her brain as a large room filled with files of everything she’s ever learned. (I believe similar to a Stephen King book). However, there’s no rhyme or reason to her filing system. I told her, I think a tornado hit mine.

Being scattered brained and inconsistent makes writing difficult. If you can’t follow your own train of thought, how can you expect your reader to? It’s like jumping tracks and leaving your passenger without a memo. They’ll be more lost than you. Ok so…where was I?

Oh yeah, completing a thought. Seems to me, I’m learning, I’ve always struggled with completing one thing….figuring out what to do with my life. Now, don’t get me wrong, I do complete projects and I CAN stick with some things.

I showed dogs (in 4-H and professionally) for 10 years and I was dedicated to graduating High School with honors (which I did). But then I turned 18, which meant graduating high school as well as the end of my showing days. So what’s every honors graduates next move? College right? wrong

I changed my major three times. I started out as an English major but I got bored hated my professor. So I dropped out, moved out of state and got accepted to Le Cordon Blu in Portland. I hated it too actually, I got homesick and dropped out, moved home and changed my major to Spanish. You seeI have a passion for food and language.

So here I am, 6 years later. I constantly lose my vision, can barely walk on my own and lose the use of my hands. I started my own business two years ago take a look . But I can no longer do this with ease or certainty that I can complete a project. I mentioned before, about finding the new you. So now, I am FINDING THE NEW ME. I’m writing again. Which is where I was in 2006. So is this the new old me. It has taken me a lot of time and it will probably take me more.

Don’t be afraid to try new things. Don’t be left thinking what if?. Find the new you. It’s OK to drop what’s not working to pick up something that might.

FIND OUT WHO YOU ARE and what your meant to do. Im signing off for now.

Xx

Broken

Been beat down and broken inside/
Filled with emotions I just can’t hide/
Tears pour from tortured eyes/
Hiding behind a stream of lies/

Trying so hard to break me down/
Have me so low I won’t be found/
Lost in a world unknown/
Knowing only that I am alone/

Words spew from broken lips/
Reading from unwanted scripts/
Hatred seen amongst their eyes/
Left asking a train of whys/

True colors being shown/
If only I had always known/
Bringing myself back from dead/
Keeping their lies out of my head/

Finding my grip on reality/
Finding ways to set me free/
A love so strong and true/
Known to just a few/

If you dare to see/
The person I aim to be/
Take a look into my eyes/
Staring back through all those lies/

By Lena May