An artist piece, showing a woman with a decorative dress and butterflies floating above her hand.

How My Chronic Illness Transformed Me Into a Butterfly

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In 2014, I was still stubborn. Burning that damn candle always at both ends. Racing out the door in morning, nodding at the kids and hubs while the family prattled about their day. I wasn’t present. I was panicked, my thoughts a mile, 20 miles ahead. I had anxiety attacks all the time. Ungodly metabolism like a pat of butter in a searing frying pan and fighting the grip of a ravenous eating disorder that was so severe my body feasted on my muscles.

Have you ever had your muscle gasses measured in your urine? Good times.

When I got sick I mourned the lost me. In perfect hindsight, it wasn’t ever ideal. I fought against myself every single day. Every moment. I shone outwardly, had studied the art of polish and I could pull off a dazzling smile and nod like a bobblehead, but I was a veneer. My body coated with a thin gloss that could crack with a wrong look. I overanalyzed and examined other people’s opinions ceaselessly. Constantly seeking approval that was never enough…and was never found in me.

Still, I grieved when the ground was replaced with a listing ship plank. I grieved what I thought I was losing. The person who was able to travel and seize every opportunity. Except I hadn’t done that. I lived in the grind of someone else’s dream. That was reality. I was not confident in my core, reaction-parented and waited for the end of my relationship. I didn’t believe in me.

So, who was I really grieving?

The dream of the person I know I can be, and the one I am shooting for “if only I weren’t sick.”

It’s not real.

I lie to myself.

Start to rip the dusty carpet off the stairs, get two minutes in and call to my hubs who has to take on the job with as much grace as he can. Sometimes I think he’s a better person than me! I lie to myself, a puppy will not exhaust me. I lie to myself that I can keep up with the sick grind of the superstars.

Because I am afraid business will dry up if people know the truth.

I had a breakthrough yesterday. Spoke with a coach like one I had never met before. I hope to work with him one day.

But he asked me, “Do you think the butterfly would ever want to go back to being a caterpillar?”

Of course, we know the answer. No.

So,, in the interest of full transparency, I am going to share with you. I am a butterfly who can accomplish different things than that caterpillar, and there are some things the caterpillar did that I will not be able to do anymore. For the first time since I got ill on April Fool’s Day (worst joke ever!) I am going to tell you… it’s hard.

It’s hard, but it doesn’t mean I don’t do it.

It doesn’t mean I haven’t had to innovate new ways of working. If I have to take a nap or drop, guess what the decision is? It’s hard and sometimes I can’t stand the dizziness. I can’t stand the natural curiosity when I just want to shop (occasionally, from a chair).

“Oh, did you hurt yourself?”

“No,” I say, not caring about awkwardness and wanting to get on with whatever I am doing. “I have a disease.”

It’s hard, but I have slowed life down and expanded my work hours so it’s manageable. It’s hard and I thought I would lose everything. But instead, life got deeper and richer.

Life is a crazy mofo.

I don’t want you to see the facade. It is really hard to be in this body every day, but I do it, endlessly thankful for a passion that pushes me and sometimes drags me! I am humbled and excited and then discouraged all in the same five minutes.

I know some peeps are not so lucky. I am a naturally optimistic person and that makes it so much easier.

So, butterfly me can’t go to regular yoga without needing assistance to walk to my car afterward.

Butterfly me can go for 20 minutes maximum, or sometimes not at all.

Butterfly me can use the mental trap in my head to latch onto ideas and inspirations. Caterpillar me would turn those ideas over and chastise imperfect action.

Butterfly me traded one sick body for another, but in a way, I am healthier. I am definitely happier.

I needed to break to get there.

Butterfly me knows there is a reason for this illness; it is to help others reach their own dreams despite the perception of their own limitations.

So, I say goodbye to the lofty hope that I will ever be physically and “normally” functional again. After more than three years, I can finally open my arms to butterfly me and tell her I’ve been waiting to hug her tight for all her efforts and I am overjoyed to accept her just as she is. She is a pretty great little cookie.

I haven’t been very nice to myself. Unforgiving. Harsh. Judgmental. Ashamed. Angry. Disappointed. Maybe you can relate?

That bullshit ends today. We all have our stories and our things.

I love my life, but it’s not a sanitized Facebook post. It is hard. I cry. I rage. I slump.

But then…I rise. Like we all can.

Weirdly, I wouldn’t trade out my transverse myelitis and suspected multiple sclerosis. Because I became whole as I crumbled.

Maybe my disease even saved me?

What is waiting to save you that you are denying
?

Are you being kind to yourself? Are you respecting all of who you are and who you are not? Why?

What are you fearful of losing if you get honest?

One more tie cut to the old me. I am better for it today. And tomorrow. I accept this new chapter and everything it will bring.

I hope you will, too.

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Thinkstock Image By: artant

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The Process of Accepting My Chronic Illness

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This week has been all about acceptance. Acceptance of my life now I have a chronic illness, acceptance that my old life is just a memory, acceptance that I will have good and bad days. Acceptance of just about bloody everything!

You see, acceptance is where you need to be with just about everything that happens in your life that you have no control over. For some that’s easy, but for a control freak like me, it’s bloody hard work.

But I’ve been here before thinking I’d finally gotten through the grief of my illness, but I get scared that it’s a false sense of security.

I’ve flared for three months. Its been hard going. (The trial drug I was on, I think has a lot to do with that.) But this week I’ve only had two days in bed out of seven, which is pretty good going for me. It feels really strange saying that two days in bed a week is a good thing…It really isn’t!

I’m sure that many of those of you that are healthy are thinking, “Jesus, I’d love two days in bed every week!” Trust me you wouldn’t. When I was working I used to think I’d love to be at home in bed watching crap daytime TV. But now I’d love to be at work, being the old me again. I’d give anything to go back to that life – even though I moaned constantly about it. The old saying, “You don’t know what you got till it’s gone,” is actually spot on!

How do you get to acceptance? Well, I clearly have no idea because if I did I would of got there a long time ago. But, what I do know is that I feel calm about it all. I can talk about it and not cry. Someone once told me, Once you can tell your story and not cry, you’re over it.” So maybe this means I’m finally “over it.” Maybe it just means that because I’m finally getting some “good” days I’m feeling like I can handle more mentally.

I sat and chatted to my husband last night. We talked about all we have, rather than the crap we’ve had for the last six years. That regardless of what’s been thrown at us both, we are still here, fighting, pushing forward everyday and trying our hardest to have a “normal” life despite his mental health and my chronic illnesses. We can’t change what’s happened to us. But he said something really profound to me, and I can’t stop thinking about it.

He said, “In a way I’m glad I have bipolar. Don’t get me wrong, I’d not have it in a heartbeat, but I feel like it’s made me the person I am. I’m a lot more compassionate and a better, more understanding person for having bipolar. Its given me resilience. Everything happens for a reason. Maybe I was given bipolar for a reason that we don’t know of yet, but what will be, will be.”

Wow. That smacked me in the chops a bit. Why can’t I look at my illness like that? When did he get so wise about his condition? When did he get to acceptance? If he is there, why aren’t I?

Taking a step back and seeing the bigger picture, if I hadn’t of fallen ill, I would still be in the job I’d always done. I would of been to scared to leave. I would never of started blogging. I wouldn’t of realized how much I love writing and I wouldn’t of helped the people I have so far who also struggle with this rare illness. I’ve also massively changed as a person, for the better I think. I’m still determined to raise awareness about this condition and for chronic illness in general…Maybe that was my calling, who knows. But, I’m going to try and take the rough with the smooth and accept my new life. I am determined to make this into a positive.

After all, what will be, will be!

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What I Learned From Trying to Combat the Exhaustion of My Illness

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Exhaustion: the state of physical or mental fatigue. Exhaustion is one of the worst symptoms to deal with while living with a chronic illness. Aches and pain can often be dealt with by taking anti-inflammatory medicine or mild painkillers, depending on your doctor’s recommendations. Many other symptoms can be treated with medicine or physical therapy, and that can help immensely.

 

However, exhaustion is next to impossible to treat. How can you treat a symptom that basically requires an obscene amount of sleep and mental rest, and even then doesn’t seem to ever go away? I can sleep for 12 hours in one day, never leave my bed and still feel mentally and physically dead. Living with exhaustion can become very taxing, so I decided to try to find a treatment of some kind that would help relieve some of my extreme fatigue and exhaustion.

Attempt one was to try to boost my vitamin B12 and my vitamin D along with my iron. All three of those supplements can lead to exhaustion if the levels in your body are too low. So off to get blood work I went. To my dismay, the blood work levels were normal. So on to my second theory. I had switched my depression medication a few weeks prior to when this onset of exhaustion started to happen. So I thought, well, maybe it’s the change of medicine that caused the fatigue! That must be it! I thought to myself. I emailed my doctor to ask if perhaps that might be the reason, but again that theory was shot down!

With no other theories I could think of, I resigned myself to the fact that exhaustion was just something I was going to encounter and I just needed to come up with a healthy way to manage it. Back to the drawing research board! After a few weeks of surfing the web, I came up with a plan. For starters, I conceded that I needed a healthier diet. Pizza and donuts weren’t going to cut it. Next on my research list, I needed to start to maintain a workout schedule. Now I’m not talking “boot camp” or “marathon running” – obviously living with a chronic autoimmune disease will not allow me to obtain that kind of exercises plan. But I can commit physically to a 10-minute walk every other day and some yoga stretching. With this plan of working out and eating a healthy diet in my pocket, I started my exhaustion booster plan.

several women standing in front of a mirror and flexing their biceps

After about two weeks of sticking to my exhaustion plan, I did notice I was less tired. Do not get me wrong – I was still very tired and had to force myself to get up each day. But I was probably 45 percent less exhausted then my original state. That I would take happily!

So with all of my research and trial and error and finally seeing only a small amount of success, I came to the realization that exhaustion is something that is not going to go away. It’s not just a temporary symptom that will fade over time. I’m stuck with it and I have to live my life around the fatigue and grogginess.

But with the help of my makeshift healthy life plan and a positive mindset, I can push through the day and still have a regular quality of life! Having a chronic illness takes so much from my life and affects the way I am able to live it. However, in working with my disease and my symptoms and not fighting against them, I realized I can have a great, sustainable, meaningful life, and that to me is well worth it!

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Accepting My 'Failures' When My Disease Progresses and I Lose Abilities

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When living with a chronic illness, especially a degenerative one, one of the hardest things to get used to is the gradual loss of abilities. It can happen overnight. One day you open jars, the next you’re just too weak. Or, it can happen gradually. Like when you notice you’re carrying less and less on each trip into the house after shopping. This is the nature of chronic illness and it is probably the one thing our friends and family understand the least.

Take the recent vacation I just took with my husband. (Recent as in I’m on the plane flying home as I type!) Being that I have been fighting my disease for 21 years, we have been on many trips together requiring air travel. No, it’s not easy for me, but I know what I need and so does my husband. He’s more than willing to pick up the slack.

But this time was different. This time I failed.

 

Usually, I am able to walk to check in, rest, walk to security, go through the disability line, rest and get to the gate. Even in larger, busier airports I have been able to accomplish this. But today at McCarren Airport in Las Vegas, I did not. I made it to the security check point and I crashed. The line was so long and I was so tired and dizzy and achy that I called for a wheelchair. And then I cried.

I know that doesn’t sound like such a big deal. I have a condition that causes pain and breathing issues and now I have near constant pain from back fractures. But mentally, I just wasn’t ready to take that step yet. And I’m still struggling with it.

Now I know this isn’t really a failure and that by using this word, I am being exceptionally hard on myself. But the reality is that for many of us, the chronically ill who are used to being able to do certain things, being able to meet our own expectations is vital. In my mind, it means I’m still winning. Even though I know that someday I may not be able to do whatever it is I am attempting, as long as I can do it that day, all is right in my world.

So back to my “failure.” I know that year after year, I will lose my ability to walk longer distances and stand for long periods of time. I had actually prepared for having issues with this in and around Vegas itself due to the heat. But I did well with my walk, rest, drink strategy so it did not occur to me that the airport would take me down. But it did, and I have to face it. I have to accept my failure.

However, in doing so, I will also be accepting myself. My continually evolving physical self. And as a chronically ill person, that is a necessary process. Each and every time my disease progresses or I finally have to give in to another loss of abilities, I have to accept my new self. And that’s OK. Because it’s actually a process everyone should go through as they age. It’s just that healthy people can try to avoid it or put blinders on while I cannot. And truthfully, ignoring these changes can be really dangerous.

So although I’m still not fully on board mentally with my body’s decision to shorten my walking distances again, I am dealing with the realization that I am at another stage in my disease process. And I am OK with that. That’s how this all works. I knew that from the beginning. And at some point, I’ll realize it’s hard enough fighting this monster of a disease, I need to stop fighting my mindset about it as well. After all, that wheelchair ride was pretty darn restful! And my attendant was a riot! (They didn’t let my husband push me.) So in reality, what’s wrong with making my life a little easier and not putting my body through quite so much when I travel?

I want all of you out there who question yourselves when you need special accommodations or worry about how others perceive you when utilizing such accommodations to just stop. Put all that down. We are all fighting whatever illnesses, conditions or disabilities we have already. Physical or mental. It’s time to stop adding unrealistic expectations and guilt onto that as well. Deal?

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Thinkstock photo via Noel Hendrickson.

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Why I No Longer Say, 'I Hate Doctors'

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Many of us in the chronic illness community have had our share of negative experiences when it comes to doctors. Often we are faced with ignorance and arrogance about our illness, often we are subject to harsh remarks and disbelief. This happens all too frequently, but not all doctors are like this, not all doctors are bad.

I have a long history of doctors being negative to me and telling me that I am making up my illness for attention. These negative experiences started at the young age of 14 years old. I used to always say “I hate doctors,” grouping them all together as arrogant people who did not care for the well being of any of their patients. However, I had to re-examine this stance, realizing that not all doctors are the same and some of them do actually care about their patients.

I am lucky to have a primary care doctor who believes everything I tell her. Never has she questioned the validity of my illness, never has she made me feel like I have done something wrong. She goes to great lengths to help me to the best of her abilities. This had me thinking back to when I was a kid, leading up to when my symptoms started to overwhelm me.

As a child, during the beginning of what has now become my normal life, I was also fortunate enough to have a truly caring primary care doctor. Those days are kind of a blur to me, so much happened in such a little time. But I remember one moment in particular, my childhood primary care doctor gave me a stuffed bear once when I was in the hospital. She didn’t have to do that, she did that because she cared about what was going on in my life. She cared not only about my physical health, but my emotional wellbeing too.

We are quick to point out the negative experiences we’ve had with doctors, quick to recall the ridicule and humiliation of not being taken seriously, that we often forget to take time to point out the kindness of others. Not everyone is as lucky as I am, not everyone has a positive experience when it comes to doctors. But for those who do, remember to take time to be grateful for them.

I still dread going to the doctors, even if it is my primary care doctor. The negative experiences I have endured have impacted me to my very core. I still want to say “I hate doctors” every single time, but now I force myself to not say this. During these times I remind myself that not all doctors are the same, and I take time to be grateful that I have had many positive experiences with doctors who truly care.

I just want to take a moment to thank all the wonderful doctors and nurses I have had over the years, thank you for believing me, thank you for caring about me as a person and not as a patient. Instead of focusing on my bad experiences I will choose to look to you and remember that at the very core of the medical profession there are people who actually do care.

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How My Parrot Helps Me Through Life With Chronic Illness

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I have always been an animal lover. Growing up, our household was alive with diverse pets. We had fish, hamsters, cats, dogs and birds. Although I cherished them all, the birds captivated me the most. I was in awe of these beautiful creatures and their unique personalities. I knew someday when I was a “grown-up” I would have my own parrot.

My sister had given me a book entitled “The Guide to a Well-Behaved Parrot.” This book became my bible for parrot research. I read it cover-to-cover many times. It included descriptions of different parrots and their traits. I bookmarked a page that summarized, in the author’s opinion, “as close as you can get to the perfect parrot,” and “an excellent apartment dweller.”

In 2008, I was a working professional in a diverse and wonderful city. I had my own place for the first time. Although it was a modest studio apartment, I was proud of it. My home was the embodiment of my accomplishments as an adult. But something was missing. My companion animal, my parrot I had always longed for.

Thus I began my quest. I pulled out my parrot book, determined to find that elusive bird that caught my interest years earlier. They are called Lesser Jardines parrots, and it turned out they were not easy to find. After months of searching, I found an animal rescue farm that happened to have a flock of Lesser Jardines parrots. I bought a cage, filled it with toys, and made the two-hour drive to find my new friend.

When I arrived, I found myself in an outdoor aviary surrounded by Jardines parrots. Some were trying to fly to me, pulling at my shoelaces, making lots of noise. As I scanned the space, I saw a shy little guy in the corner, peeping at me from over his shoulder. He had a malformed toe but I didn’t care. This was my baby. I took him home and named him Ziggy.

green parrot named ziggy

Since 2008, Ziggy has been my constant companion. We have moved all over the place together. I experience happiness, joy, love, fear, pain, sadness and heartache that life brings with my parrot by my side. We sing and laugh together, and he comforts me when I am in distress. For many years I existed without him in my life, but it’s so hard to picture that now. I never knew a bond like this could exist between a person and a parrot.

woman cuddling with her parrot

Living with chronic illness is rough. I am so grateful for my best friend Ziggy. Nine years of my life I have cared for him. Although I knew it before, the realization is crystal clear now. I need him just as much as he needs me. In my darkest hours, when the light fades from view and pain overwhelms me, he is there. When I lay in bed, despondent and saddened by my reality, he is there. It is quite something to have a little green bird cuddle in your arms and whisper, “It’s alright, it’s OK.”

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