She believed she could…so she did!

So, I’ve been toying with starting a blog for years. YEARS. What took so long? Well, I suppose I thought I had nothing to write about, nothing to say – or worse, no one would read it or care. I finally decided to give it a go because, well, I finally admitted to myself  that I had plenty to write about and certainly enough people to share it with. I gave up on being a writer somewhere in college where I basically gave myself a near-nervous breakdown over trying to be the next Joan Didion or something. I’ve always crippled myself with doubt, obsessing over making everything perfect before I even got halfway through a project – the anxiety of all I wanted to accomplish left me stuck and depressed. The cycle reared its head with everything I tried and I soon also gave up photography. Nothing I did was good enough. I’m now and actor with my current project also a director, and I’m determined to give myself a break this time.

Here is where I will sound off on my personal and creative adventures and struggles. I may be broke, but hey, I’m not broken.

Today I Made My Voice Heard!

Today I received an email from the U.S. Pain Foundation uspainfoundation.org about a recently released draft report by a task force overseen by the U.S Department of Health and Services which is creating recommendations for pain management. They are actually asking patients for their input!

This public comment period ends April 11; after that the report with be completed and submitted to congress. If you are interested in commenting or know someone who may be interested, go here:

https://www.regulations.gov/document?D=HHS-OS-2018-0027-0001

 Below is a small clip from this site to give you an idea of what it’s about :

Draft Report on Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations:

“The Comprehensive Addiction and Recovery Act (CARA) of 2016 led to the creation of the Pain Management Best Practices Inter-Agency Task Force (Task Force), whose mission is to determine whether gaps in or inconsistencies between best practices for acute and chronic pain management exist and to propose updates and recommendations to those best practices. The Task Force consists of 29 experts who have significant experience across the disciplines of pain management, patient advocacy, substance use disorders, mental health, and minority health. This draft report describes preliminary recommendations of the Task Force that will be finalized and submitted to Congress in 2019, following a 90-day public comment period. “

 

You better believe I went right to the website and got to writing. I had a lot to say. 

I’ve added my comment below, to give an example and also a more comprehensive look at my journey to a diagnosis. Thanks for reading.

 

“I am a 34 year old female, who is in very healthy physical shape outside of my chronic pain diagnosis.  It took four years, over five doctors and countless medications before I received a proper diagnosis. I was only successful in finding the right doctor and diagnosis after spending a majority of my free time researching my symptoms and refusing to believe that no answers could be found.

My pain began as piercing headaches behind my eye, which was later diagnosed as occipital neuralgia.(I learned years later This condition was actually caused by arthritis and pinched nerves in my neck.) I began to then have intense pain in my neck, so intense it would wake me in the middle of the night. At the time I was seeing a neurologist who had been treating me for the chronic headaches, and she sent me for an MRI. She had been prescribing me various migraine meds but they only made me more sick. She saw nothing of concern in the MRI but said I could get physical therapy if the pain persisted. I was told it was stress. I began to see a spine specialist and physical therapist, and my treatment included massage, neck traction and learn exercises to do at home. I was not prescribed any pain medications. At his time however, my therapist prescribed Cymbalta, an antidepressant that also helps to treat chronic pain. I also received trigger point injections and facet joint injections. These would help the pain only temporarily. Eventually my insurance company refused to pay for more treatments.I continued my research but the doctor I was seeing had not heard of the diseases I mentioned.

Very soon my lower back and hip also became very stiff and painful, and regardless of my usual yoga routine there was no relief. Then intense fatigue, weight loss and hair loss began. I felt weak and had horrible bowel problems. I lost 20 lbs on my already small frame, getting down to only 92 lbs. I had bald spots and and my hair came out in clumps. I became so depressed and scared I went to a walk-in clinic unable to deal with it anymore. I received amazing care from that clinic, and they took all of my symptoms very seriously. They ran blood tests and recommended I see a rheumatologist, who then looked over my MRI and told me the other doctors had read the MRI wrong – I had been developing arthritis in my neck for YEARS. He suspected I had what is called ankylosing spondylitis, a rare form of arthritis that causes inflammation in the spine and if not treated the spine can fuse together and create a crippling disability. I began Humira to confirm the diagnosis, and it mildly improved my symptoms. I do however also have osteoarthritis in my neck, likely caused by lack of proper treatment and wear and tear ( I am a performer). With continued widespread soreness and pain near joints, I have also have Fibromyalgia. These diseases not only cause pain but IBS, horrible night sweats, sensory sensitivity, stiffness and fatigue.

The widespread pain I experience has caused me to miss work and career opportunities, and with the amount I spend each month (hundreds of dollars)and the money I wasted being misdiagnosed, I am in deep medical debt. I am often unable to work full time, though I am not quite able to qualify for disability. Obviously my quality of life and wellbeing has suffered, as it can be hard to commit to job opportunities or even social events as my pain is not always predictable, and it decreases mobility and strength. I am now understanding that some of my life goals will be much more difficult, if not impossible, to achieve. I spend most of the time managing my symptoms my biologic, anti-inflammatory and mental health medications; I also use topical creams and patches as well as compression sleeves to further control the pain. It often robs me of sleep.

I am not at the point of needing opiates, but I am considering medical cannabis. I have become an outspoken advocate for chronic pain awareness and through support groups and foundations I have learned that its been reported that many people, especially women, can go over six years and see a dozen doctors before receiving a proper diagnosis. This is a serious health crisis especially for women! Our pain is not taken seriously. I was lucky, but many women are dismissed and disrespected by medical professionals in their journey to receiving help. We need to work harder to end stigma, raise awareness, and give patients easier access to pain treatment options. Our lives depend on it.

 

 

 

“Stiffness is Coming…”

Love this meme…found it through The Mighty: https://themighty.com

If you haven’t checked them out they’re a great resource for peer support. If you suffer from depression, anxiety or any chronic illness you can find others like you; illness can be incredibly isolating so they’ve been a lifesaver! Especially when they do these fabulous and funny lists – a good laugh is a welcome distraction from pain and discomfort.

Winter is especially rough for chronic pain sufferers – I’ve had many rough patches since the temperatures dropped ( as I type this I can feel the stiffness settling into my fingers 😬).The damp and cold weather have caused an uptick in flare ups; at times they’re so bad I can barely walk. It’s not always easy to tell when it’s going to get bad, so I’m forced to be over prepared: carrying pain meds, cooling/heating patches and creams, compression sleeves, tea, etc. I’m in a constant battle against inflammation and it usually wins. Even with the half dozen meds/ supplements I take on any given day coupled with lifestyle changes I’ve had little progress. It actually feels worse – it has spread to more areas of my body. It makes it hard to get comfortable enough to fall asleep or sit anywhere for a prolonged time Because my back and hips start screaming. Going to the theatre or the movies is hard, which really sucks because those are basically my two favorite things to do. I haven’t gone in months.

I’ve been warned that the meds will take up to six months or more to help and over the counter pain reliever is a joke.

It’s hard to get on with my life in the meantime.

My body spends so much energy fighting the inflammation I’m left constantly fatigued. I can sleep as much as eleven hours and wake up exhausted.

Mornings are hard because the stiffness has settled in during the night, and I usually wake up drenched from be night sweats. Not cute. When I’m busy during the afternoons, running to appointments, rehearsals, work – tire me out even more. I move at a much slower pace. I have trouble climbing stairs ( thanks MTA and the crummy old walk ups 😫) and carrying bags ( hard to carry all my necessities and run errands) and standing for long periods (thanks overcrowded subway ) I can sense the frustration of the people behind me as they rush to get past me or grab the seat before I do.

No I’m not in a wheelchair or using a cane(yet) but I’m still struggling. I would mean so much if people would have more patience and kindness ❤️

Looking young but feeling old is a special type of hell. Hard to socialize, date or be productive and I have so much further to go. I have so much I still want to do.

I prepare myself for the worst of it, the possibility of becoming severely disabled. But I hope for the best.

X

New Thoughts…

It has been a while since I posted…just a new piece about my journey. More on this later!

There is a new show on Netflix entitled Maniac, about the journey of two people brought together by a mad doctors experimental methods of rewriting the brain – to erase mental illness. I don’t plan on watching it. The trailers depict these experiments as wild adventures though the subconscious – trippy, colourful, almost fun. Past films like Silver Lining Playbooks characters (who have mania and depression) are depicted as quirky, pill popping brats. To actually live with a mental illness is not the trendy joyride that Hollywood would have you believe.

There is a legacy of mental illness I have inherited from both sides of my family: PTSD, death by suicide, depression, anxiety, personality disorders – that I know of. My brother seems to have lucked out – where as I have lived with anxiety and depression since childhood. I remember the feeling of being inexplicably sad from the tender age of 5; I had my first panic attack when I was 8. It continued through grade school, with frequent trips to the nurses office with a pounding in my chest, dizziness, nausea, and bought of uncontrollable crying. I would call my mother begging to be taken home. All these episodes were brushed of as over dramatic temper tantrums, and later laughed off as me just being a tightly wound neurotic. I did not have the vocabulary to ask for help. It took a call to a suicide hotline at the age of 19 and much needed therapy for me to realise I had to fight for my own wellness.

This fight continues to this day, as I talk openly about what I have been through to try and eliminate the stigma that these diseases carry. My goal is to create a world where there is never a single person who escapes help. It started with discussing my diagnosis with loved ones. Crying over the terrible wave of celebrity suicides, how they can trigger past trauma and new destructive thoughts. The promise I made to my brother, that I would call him if it ever came down to life or death. The art I put out into the world – photography, blog posts, and theatre projects. I donate and openly champion organisations like NAMI, The Mighty, and Project Semicolon. I can sometimes be very outspoken when correcting the behaviour of others who need to be educated, but I have come full circle and take strength in what others view as a disability.

House Bound

So it’s Memorial Day weekend and many people are away, at barbecues, or shopping. I am, as usual, are couch bound; I made it here all the way from the bedroom so I suppose I should give myself some credit! It was hard – I woke up to the patter of rain on my windows – when it rains it seems my pain worsens. Crushing headache and barely able to turn over; I feel like an arthritic senior. No offense – I’d expect to feel this way when I’m 70, but to be young and sick is very isolating. It’s lonely, but part of me is glad that I don’t have a partner or kids that I have to drag to my doctors appointments or apologize to when I can’t do anything fun.

So what the hell do I do all day? Surprisingly I feel somewhat productive – reading books I’ve had around for ages and reorganizing the apt when I get a bit more energy. Updating my website, applying to acting and directing gigs, hoping I’ll be well enough to attend the auditions or keep up with the work if I actually book it.

And yeah, I watch way too much TV. But I try to watch the good stuff, things that keep my brain engaged: sci-fi and documentaries keep me engaged, actually give me ideas. Ideas I hope I’ll actually be able to put in to action once I feel better. If I feel better.

The Struggle is Real…

So I’ve had a lot going on since I first posted…I kept meaning to write but was either too busy or too exhausted. And I don’t mean tired in the traditional sense. I mean chronic-pain-can-barely-move tired. The issues that I’ve had for the past four years seemed to have worsened in spite of various doctors, treatments, meds and self- care.

The facet joint injections have solved my occipital neuralgia ( a sharp, persistent piercing headache in my right eye) but have done little for the constant throbbing, cracking, and stiffness in my neck and shoulders. That is constant now. It has gotten harder and harder to sleep, even with sleep meds. We did blood tests, so far auto-immune has been ruled out…next up is a rheumatologist. Fun!

Being young and unwell is the worst – while my peers are out partying, dating and furthering their careers I’ve been hanging out in waiting rooms, horizontal on the couch or nursing my sore body with body massagers, hot pads, and strategically placed pillows. I feel old, and at my worst I feel helpless and isolated. At a time when I should be in full career mode I’ve missed auditions, classes, networking opportunities and have relied on my artist friends for helping with projects; without them my resume would be getting stale.

Acting requires stamina, and involves long days in rehearsals or on set. My body can barely take it. I’m wiped after a weekend of performances and often spend the Monday after in bed, having to get twelve hours of sleep before crawling out of the covers. I want to support friends in projects, but feel hesitant to RSVP knowing I’ll be in too much pain to make it.

I used to love going to the movies and the theatre, but it’s nearly impossible to sit for too long- sometimes my lower back starts to scream. Not all of the theatres have lush seating! My movie pass gathers dust. I have a very intimate relationship with all streaming services. At least I have that for company…and my cats.

Being able to snuggle and chat with them keeps me from going completely bat shit. They may not answer me when I talk but at least I don’t have to invent an audience. They meow in response…sometimes.

Oh, and let’s not forget the bathtub. I live in my bathtub like Margot freakin Tennebaum. I’ve got a whole set up: neck support pillow, cushioned bath mat, a tub tray that holds a drink and a book (or iPad). I spent hours soaking in a boiling hot bath to relax my muscles, and it’s the only time ( besides when I’m asleep) that I don’t feel pain.

I’ve lost my appetite, some hair, loads of weight and a lot of what’s left of my sanity. I have also lost what few hours they were giving me at work, so I’ve started remote sales and dog walking when I can actually get out of the apartment. The debt is climbing and I don’t even have a diagnosis yet. Chronic fatigue? Fibromyalgia? We shall see. I have more appointments this coming week…

This fun (and unflattering) gadget helps to stretch my neck.