How I Got Here

 

 

 

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Hello! Nice to meet you! I’m a 26 year old with a passion for painting, advocating for invisible illness awareness and research, gardening, canning my homegrown produce, and trying with every ounce of strength I can muster to get back up again and thrive, despite being knocked down by several chronic illnesses.

It’s challenging enough striving to be a happy, well adjusted, and financially stable young adult even in the best of circumstances. Adding in a chronic illness or four will throw a wrench in the works in a way healthy people will never be able to understand.

If you’re here because you are also dealing with a difficult diagnosis or a disabling condition that has changed your life, I’m sorry. I know it’s awful, and I believe not only how much you are struggling but also how much you are achieving, every single day, even if all you did was breathe. I hope you’re having a spoon-filled day, but in case you’re not, I’m sending some gentle hugs and good vibes your way.

I know what it’s like to run the entire gamut of what is available, and to have treatments fail one-after-the-other. I completely understand how frustrating, isolating, and debilitating chronic pain and chronic illness are, I understand the havoc they wreck on your entire life, your finances and goals, even your ability to focus on basic tasks.

It’s a daily struggle not to wear my chronic fatigue, fibromyalgia, trigeminal neuralgia, and anxiety like a big ugly blanket around me. Some days are definitely better than others, but as anyone with a chronic illness understands, “better” does not mean that my pain is actually gone or that I should push myself to my limits and beyond just because I can. So there’s a balance to be struck here, and I have to confess that I haven’t completely found it yet.

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My Chronic Illness Story:

A semi truck hit my car on my way to work one morning in 2011. My life has not ever been the same. My doctor immediately noted that I had numbness in my hands, blurred vision, and she diagnosed me with myelopathy. I was given the usual advice and treatments and sent on my way to get better and hopefully not bother my doctor any more. I had to take almost two months off of work, could barely climb stairs or read a full page of text, random parts of my body hurt like they had never hurt ever before. I didn’t think much of it, but did notice that my neck pain was not really improving and I was having flares of low back pain, so I began asking my doctor what could be wrong.

From that point on, every day, it was something with me. I was so frustrated. I was doing my best to follow all the conventionally recommended lifestyle changes to heal myself as fast as possible, practicing yoga twice a day, doing all my physical therapy exercises and attending two to three physical therapy sessions a week that lasted about 2 1/2 hours each.  I had no idea what was happening to me at all. For two years I struggled to keep my regular life, as I got sicker and sicker. No one had any answers for me, I went from neurologist to neurosurgeon to pain clinic to pain clinic. Finally, I was sent to the local teaching hospital, and it was made clear to me why I could not outrun this pain or beat it. After two years, almost to the day from my car accident, I had finally found out that I have fibromyalgia.

My first thoughts after I was finally diagnosed with severe fibro were that I should be able to get this disease into remission, after all, I’m too young to have “real” chronic pain. I had gotten through some rough times before, and this should not be any different. I believed in my ability to recover from fibro through physical therapy, diet, and practicing yoga. I believed in my ability to go on to work again, within a year or so was my hope. I should be able to power through the fatigue, pain, and brain fog to live a normal life, end of story.

Except, in the last year I have been in more pain than ever before. I have had more and more bizarre symptoms crop up out of the blue, and been diagnosed with a host of co-morbid conditions, some that I have had since birth, like Spina Bifida Occulta, and some which I have just developed recently, such as M.E. or myalgic encephalomyeltitis / chronic fatigue syndrome. Researching these new conditions, trying new medications, and going to doctor appointments became my life for a while. I even stopped painting, and have yet to fully get back into it.

That is where my blog comes in. The warmth of online support has unfrozen my life for the first time in over a year. I have met many new friends online, complete strangers have helped me in ways that have changed my life forever, and I have learned so much invaluable information about my conditions. My hope is that by writing honestly and openly about my journey to acceptance it will assist myself and others to recover the pieces that were lost along the way. Sometimes the most honest thing I can do is complain. Sometimes I am emotional and vulnerable and frustrated. Being ill is extremely messy. It would be unfair for me to pretend like I don’t experience both the highs and the lows of learning to live with limitations, and it doesn’t help others going through the same situation to read a falsely upbeat account of chronic pain. That said, I am not here just to moan and whine! I am learning to be involved and invested in the chronic illness community in a positive way, without wearing the conditions I have and the pain I am in like they are a substitute for the real me.

Welcome, and although I’m sorry we had to meet like this, it is miles better to have friends going through the same things than to be going down the chronic illness rabbit hole alone.

Thanks for visiting, and I look forward to hearing how you have journeyed through the difficulties and pain, and all the victories you have achieved in spite of your chronic illness.

 

read my chronic illness blog