Intro

I thought I would start sharing a little of what my past year has been like. I was waiting to share when I found some answers but much like my diagnosis journey for my genetic GNE-Myopathy (aka HIBM), answers do not come fast nor easy, and this has been no exception.

I feel others could benefit from this sharing.

Because there is so much to talk about, I decided to break up this subject, "What Is in a Year: What is Chronic?" into multiple parts, so if you have questions, maybe wait and most likely you will find the answers in soon to follow parts to this blog post ;). 

I can hardly believe April is approaching and in a week I'll be 39 years young. I feel like 2018 has sped passed me in some cosmic blur and I'm doing my best to pick myself up and dust myself off.

No exaggeration, I've cried every single day and night of 2018.

My health has spiraled out of control with chronic symptoms not directly related to my genetic muscle wasting disorder, GNE-Myopathy. Last year when my symptoms became too big to ignore, I began an aggressive search for why and have seen at least a dozen different specialists.

Symptoms like debilitating chronic nerve pain, chronic itching, and chronic pain have become new friends of mine, but not the good kind.

In actuality, isolated chronic pain in my hip began years ago when I was still walking with a walker, something that I sought care for but met with doctors who were of little help and even less in accountability and care. Frustrated at physically dragging myself to specialist after specialist, a huge feat for someone disabled who can't drive, I eventually gave up on finding where that hip and joint pain was coming from.

I tend to have a high threshold for pain, so at the time I put up with the pain (along with swimming and physical therapy) and it eventually subsided a little. But it has returned with even greater intensity and in many new areas. The past two years have felt unbearable.

For a long time I thought these chronic pain and nerve symptoms were residual side effects from my GNEM and being in a wheelchair so I sorta accepted it until the chronic itching began. After asking around I soon realized my chronic experience was isolated from other fellow GNEM patients.

The past 6 months have been the worst of the past two years due to horrible side effects from a prescribed drug that would supposedly help me. After 5 months of no help, I asked to be taken off the drug which sparked 4-6 weeks of the most debilitating withdrawal symptoms, symptoms I never had problems with in my life. Chronic nausea, vomiting, not eating and migraines have been my additional friends the past 6 weeks; symptoms that left me bedridden for a couple of those weeks.

I still have some of the drug withdrawal symptoms even 6 weeks later.

On top of everything my chronic pain and nerve pain skyrocketed in 2018 and every day since has  solely been immersed on getting through the day.

The pain has been constant. Immeasurable. Insurmountable.

The pain ripples and vibrates and has driven me to continuous stream of tears in a vacuum of loneliness. 

This journey has brought back all the treacherous seventeen-year-old memories from my diagnosis search for GNEM. Those days were incredibly long, difficult and lonely. While this time I have the love and support of my wonderful husband and my beloved pup, Pippi, it is still very isolating. Even my husband, who sees most every part of this journey, says he could never fully understand what my disorder and growing weakness is like nor what chronic invisible symptoms feel like.

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Last week I tried drawing for the first time this year and it was painful and tiring. I couldn’t finish the drawing. While some of this is GNEM related, the hell-like 6 months of prescription drugs and withdrawals, and then some, has greatly contributed - leaving me in a metaphorical dust. I'm physically and emotionally weak.

My neck and fingers are so weak.

Holding my head up has become a conscious effort. I’m extremely feeble and my fatigue seems to double up with every passing year.

Taking a shower drains all my energy. It's been this way for years as my muscles lessen.

I'm now worried my drawing days are numbered. My great fear of no longer being able to draw has felt unbearably close. But in a Fight or Flight (and desperate) response I decided I'm not finished and refuse to live like this for the rest of my life and doing my best to be my own advocate, something I'm no stranger to.

My GNEM takes up massive real estate in my life, I don't need life-long chronic symptoms, too. While no one knows the origins of these symptoms, I'm doing everything I can to incorporate self-care and as many natural ways of healing in along my western doctor (which I will talk about in future posts), while dissecting my environment, diet and lifestyle...things western doctors rarely ask you about.

I often neglect myself for the sake of others and important time-sensitive work, whether that is my 9-5 job or advocacy for my disorder. 

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Since I was a kid I've always experienced deep empathic qualities. I tend to absorb people's problems. I think about the strangers I pass and their life and tend to wear the world and its issues on my shoulders.

This empathic quality is largely why I didn't pursue a degree in psychology, the first degree I was interested in. I worried I would be that person who would bring all their patient's problems home with me.

For GNEM, stress is a major contributor to weakening faster and is largely why I bowed out of being an advocate for an organization. After many years in it, I realized the road to treatment is going to be very long and it's in my best interest to preserve my livelihood for this substantial journey.

Up until now my illustrations were a hobby to create greater awareness for GNEM, but I've reached the section of my life where I'm ready for the next part of advocacy and I have a strong sense of what that looks like. I want to use the time I have left with my hands, use my degree and finally pursue my own personal passions for art, story-telling, writing and speaking in order to share my message to a broader audience as an independent advocate.

But right now I'm far too tired and in pain to pursue it at warp speed. 

So, for now my focus is self-care so I can escape this cloud and lengthen the time I can draw. To get there I have to do my part in helping my body feel as good as it can and focus on all the areas I've perhaps neglected, while strengthening what I've lost due to the chronic symptoms and maintaining what I have. 

While many of these chronic symptoms began over two years ago, they became more unbearable around the end of 2016...when my mother passed away. I know of emotional pain and don't discount its effect on the (brain) body and exasperating existing conditions and even creating them.

While it was really difficult when my mother passed, the difficulty really took shape around her one year anniversary. Every time I say or think "mom", I cry. 

Last year I also lost two very important familial figures from my childhood and 2018 began with an urgent medical call-to-action for my father. All of this on top of mysterious chronic symptoms and an ailing muscle-loss disability has been overwhelming.

The silver-lining is the past year has granted much inspiration for new drawings (not that I ever suffer from ideas, just don't have the body to match the ambition). I know many suffer from chronic and invisible illnesses and I think it is greatly misunderstood by the public because people can't imagine what they haven't experienced. I have drawings in mind to visually explain it. 

I can be easily distracted and intellectually exploratory in other avenues. I have a thousand interests and could have easily gone to college for any number of careers/degrees. But with continued finite energy due to a weakening body that is a slave to time, I want my precious time to be spent on talking about things that unify us, rather than what divides us. I want to focus on doing my best to continue making a difference in my small corner of the world and affect change. 

I think the human condition is what unites us. If only we could see we are more similar than different, and in knowing so tapping into empathy would require zero effort. If only we could see this we would be less hateful, divisive and less acting out our emotional pain in (self) destructive avenues.

I think many of us are crying to be seen and understood and suffering in our own corners. Out of necessity to be understood is why I began sharing and illustrating my journey. 

Stay tuned for soon-to-follow parts to this topic. I want to talk in more detail about chronic pain and the brain (no, I'm not suggesting it's all in the head but pain is signaled to us from the brain, according to western school of thought), emotional pain, my daily battle with insurance and healthcare industry, being disabled is expensive, natural ways of healing and different schools of thought and self-care.

 I'm also working on a Stephen Hawking illustration and post. I was greatly saddened to hear of his passing and wanted to share what his life meant to me. I'm still drawing...just much slower. 

Be well and take care of yourself.

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I will be sharing the following in more detail in follow-up parts to this blog post:

 (so hold your questions and recommendations ;)

• My chronic diagnosis journey
• Chronic and invisible illnesses. What are they?
• Healthcare and drug industry 
• Self-care, self-healing