Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Monica's Story.'


Grass and flowers

Hello, I am Monica Michelle, I'm married with a teen and a preteen and what my husband likes to call a small zoo. I have Ehlers Danlos, POTS, and Fibromyalgia.

Ehlers Danlos is a genetic disorder that causes the ligaments to be VERY lax. In my case, this means dislocations every day from any joint.

POTS comes many times with EDS the heart rate can change rapidly from sitting to standing and can cause fainting and dizziness.

Fibromyalgia is wide spread muscle pain.

Before I was diagnosed I was a professional photographer in the silicone valley running my own portrait studio. I also traveled extensively for work and for the joy of it. I use to paint large oil canvases. I use to hike and ride my bike. Before I became sick at all I was a dancer.

Monica

I am no longer able to work, I am on disability which comes with its' own levels of guilt. While I do have good days or good hours it is impossible to guess when they will be or when they will end. The last photo shoot I did I ripped a ligament in my left arm and ended up in a cast for two months.

My illness started at birth but I didn't show signs until I was 8. Then it was years of being told I was crazy or being misdiagnosed. The diagnosis was a nightmare full of medical tests, surgeries, and doctors who were at best disrespectful. Since I had been in therapy due to being assaulted when I was a teenager all of the doctors at that time felt that it was mental. My heart problems were blamed on laziness, lack of focus, or anxiety. I was diagnosed in my 30's after a doctor looked at my history of dislocations and failed surgeries and realized I was ridiculously flexible.

Dislocated wrist

Yesterday I had a wrist dislocation from playing Candy Crush. I have dislocated my tibia from turning my foot from stepping my rib from lifting. My heart flares can be a drop of heart rate to 40 or a rise to 180 it can leave me panting and disoriented or fluttery or unconscious. My giant dog loves this since I am on the ground and he can keep me safe by laying over my chest. It is sweet but hilarious.

Dislocation pain is stabbing and all-encompassing. It is hard to think and very hard not to scream or cry. The heart thing is worse because there is little of me left and I can only curl in a ball. The fibro is all over deep ache like the day after a car accident. A flare can be an hour or months. There is no certainty with these disorders. There is no getting better and there is no cure.

Monica

Medical marijuana is the best thing for aches topical and a CBD blend to sleep, opioids are a daily part of my life for me to function. Muscle relaxers to calm things down to relocate the bone. Heart need Nuun and gu with smart water or coconut water and I ALWAYS carry salt.

Honestly the biggest trigger is life but EVERYTHING is worse right before my period.

I don't have the energy to write all the medicine I have tried out but if anyone has EVER said if you just tried...... I have tried..... Marijuana works well opioids are the only semi-reliable thing. I would be lost without my physical therapist. I love HWave but can't afford to have a home unit. Epsom salt soaks are lovely. I have pedals under my computer table and I use those so I don't lose muscle. My dogs and my kids are my best antidepressants...though sometimes they cause anxiety. My husband is my favorite human especially when all else fails to curl up with and watch silly shows. I know it's not medical but it feels like it is.

Dislocated Ankle

My biggest tip would be to please find a kind and reliable pain clinic. Don't let others guilt you for medicine you need to get by. Be VERY gentle with the expectations of yourself. Do not lie to yourself if walking is painful do not hold off on wheelchair or cane if you need to.

I miss working. I miss the business I built from a credit card. I miss being in the world but then I don't. I Love my garden. I write and illustrate children's books and run 1 podcast interviewing people with chronic conditions. I wouldn't have had the time for that if I was still working. My kids love me home since I use to work 40-80 hours a week.

It has stopped me from working, hiking, traveling is very difficult, it changed my income drastically, I can't paint on canvas all art has to be done on the ipad, I can't walk my daughter to school 90% of the time. I can't walk my dog.

When I left my business I lost most of my work friends. They are busy and I am not in the same world but it hurts. The friends who stayed I am beyond grateful for them. I can't really drive and they go out of their way to come and be with me.

I keep myself busy. I talk to friends. I sit in my garden. I draw on the ipad. I spend time with my family. I watch marathons when I can't do anything else. I write and work on my novel. I research for my other podcast funny moments in history.

I don't know what I hope from the future. Maybe if I answered this a different day I would be sunnier but I am in pain. I am having trouble staying awake and the only future I am super excited for is curling up in my fluffy chair by my roses and writiting oh and talking my husband into a soba noodle dinner with family movie night. I guess my biggest hope is that my podcast gets popular enough for decision makers to take notice and that we can make safer and more caring policies for others with chronic illness. It wouldn't hurt if my children's books became popular and if my YA novel gets a great agent =0)

Invisible not broken

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

53 views0 comments

Recent Posts

See All