It is also not that I am pregnant, nor am I engaged, switching jobs or launching a cool new project (ok I am sort of doing that).
I am also only sharing this with you because it is the reason for the delay in my second ebook. And because it caused me to almost quit blogging.
Here goes: I suffer from a rare, chronic, progressive and incurable neurological pain disorder called Complex Regional Pain Syndrome (sometimes called Reflex Sympathetic Dystrophy or CRPS/RSD).
It is widely accepted that this is the most painful condition that exists. And unlike child birth or the amputation of a finger, this pain is unrelenting. I don’t remember what it was like to not be in pain. (This is an excellent article about life with CRPS/RSD that profiles a blogger I follow).
I am in so much pain I cannot shave my legs. Or wear real pants (I am on a one woman quest to keep leggings in style, please help!). I haven’t gone for a pedicure in over 2 years because I am afraid of the nail technician touching my leg even if I tell them not to.
There are days when getting on the train is a traumatic experience and days when just walking on the treadmill results in tears of frustration and pain. I can’t swim in an ocean or a lake because the water is too cold.
There are times when the pain is so intense, I have no idea how the last 4 hours passed. I get to work in the morning some times and don’t remember even getting dressed. I say and post things on the internet that I don’t remember. This is what I refer to as pain brain.
How I got it
I blame a series of unfortunate events.
There was a car accident (after which I wasn’t supposed to be able to walk).
Then there was a running injury. A girl who wasn’t supposed to be able to walk again hurt her knee while running at a 9-minute mile pace.
Then there was the bruise from a coffee table that never went away. The pain just got worse as the bruise faded.
There is now constant fiery pain down my left leg.
What I do for it
Currently, I take 3 different kinds of medications, all of them controlled substances. I use a topical cream prepared in a special pharmacy that contains different narcotics and nerve inhibitors to help things like the breeze from increasing my pain level.
And I have a spinal cord stimulator. That means there are 2 wires floating in my spine connected to a battery in my back. I have a remote control that changes the frequency of an electrical pulse that interrupts the nerve’s pain response. I have to spend at least one night a week laying still to charge. Like a cellphone.
I have had over 20 nerve blocks, an epidural pain pump and countless hours of physical therapy. I have tried following an anti-inflammatory diet which had a negligible effect on my pain since I was already gluten, nitrate & preservative free. I have tried b12 shots and desensitization therapy. Some days I consider leaving the states for experimental treatments that are only available abroad.
Every day is a war with my body so that I can keep it from getting to the point where I am no longer able to walk. I swim because it is the workout that hurts the least and I have to keep using my muscles. I refuse to be 30 and in a wheel chair. I can stop it, so I will.
I spent 2 years holding it together after my diagnosis so that I could protect my mom from worry and shield Blondie from the possibility that I was damaged goods. I didn’t want anyone in my office to know because I just wanted to be normal-ish (having food allergies makes me different enough). Three weeks ago, I crumbled. I couldn’t hold it in anymore. This disease was winning because I had never shown up to the game.
Why it almost caused me to quit blogging
When I was finally ready to deal with this disease, I reached out to another blogger who suffers from this condition on twitter. And I mentioned that I understood being chronically ill. And that some days I feel like an 80-year old with all the medication I have to take. That was my biggest mistake. My secret was out. The world could see that I take medicine. I should have sent her a private message, and then I wouldn’t be sitting here writing this post.
[box type=”info”]The blogger I mentioned emailed me concerned that she was the problem, so I want to make sure it is clear that I am happy I reached out, it was someone who “overheard” the twitter conversation that I am referring to here[/box]
People forget that they are people when they are online. They can act as if their way is the only way. Or they will be just plain rude.
It is a very vulnerable position to be in, letting the world know what your world is like behind the curtains of the internet.
This is not like the people who think I am wrong for enjoying distilled alcohol on a gluten-free diet. Or like the comments I sometimes get about how I am not a true gluten-free person because I use grains and dairy. This was more personal than that.
A complete stranger felt they could recommend that I change my diet and go off of medication and I would be cured, because their diet cures everything and western medicine is evil.
The few things that are helping me hold on to a normal life with a 9-5 and a crazy fun set of hobbies and friends are being called evil by strangers on the internet. Medicine helps me people. And I would appreciate it if you would respect my decisions to trust the doctor I am currently seeing.
I was offended. I was hurt. Medical decisions are personal, just like food choices.
I am telling you that I am sick, not for your sympathy, but so that you can see how judging my treatment choices like that hurts.
Just as you judging me for the food I eat is inappropriate (Shauna wrote a great post about this), so is telling me that my diet is the cause of the pain. I did not make any of these choices lightly. They are the fruits of a decision making process that involved multiple opinions, referrals and hours of research. I have to believe that there is hope for me, and I have to believe that my doctor knows how to treat this. Or else there is no hope left.
I am not ready to go there yet. I am 28. I have a life to live.
I envy people who’s lives can be turned around by changing their diet. My friend Amie is proof that food is powerful medicine and can be a horrible poison. Heck, food changed my life. But this time, it isn’t so simple.
I am using food as medicine, but it can’t replace all of the medicine prescribed by my doctor. I have increased my intake of anti-oxidants and b vitamins. I have decreased my caloric intake. I eat whole foods. I avoid chemicals as much as possible. I go to the gym and fight through the pain.
On the other hand, cupcakes have theraputic properties. So I am not going to give those up completely. Ever. Sorry.
I have an excellent medical team. My allergist, neurologist and anesthesiologist (pain specialist) are working with me to help me build a healthy and full life. And I am going to keep taking medicine that makes a positive impact on my quality of life.
If a friend of yours suffers from a chronic illness, do not offer them unsolicited advice. What they need is support. A shoulder, an ear. Not a lecture.
And the ebook?
A major flare left me unable to finish photographing cakes and formatting the book, I am postponing the release until August 15. But you won’t be disappointed. Until then, there is still the gluten-free cookie ebook!
So the project I mentioned
If you follow me on Instagram, Pinterest, or Flickr, you have seen parts of it. Three times a week, I will be posting an image with a quote or illustration of something positive or inspiring that speaks to me. It is part of a quest in the online game SuperBetter. (I will write a post soon about how this can be an incredibly useful tool for handling a celiac / gluten-sensitivity or food allergy diagnosis).
It is time that we all accepted each other and their decisions regarding how they take care of themselves.
I might tell you that from experience changing my diet changed my life. And food is powerful medicine. I might want to hear from you how when you went dairy free a fog lifted that you didn’t know was there. I want to know that how you eat makes you feel good. Because how I eat makes me feel good.
But I am sick, and the treatment plan I have chosen is not up for discussion. Now, let’s make some cupcakes, shall we?