Interview October – Michelle Curtis

It’s time for the annual series I run on There Is Always Hope called Interview October. I have spent time asking questions about health conditions that these amazing people are living with, and their replies help bring education and hope to my readers.

Today, we’re meeting my dear friend Michelle Curtis who runs the blog site The Zebra Pit. Let’s hear her story!

Include a photograph of yourself:

Introduce yourself and tell us a bit about you…

Hello! I’m a 47 year old queer disabled woman living in greater Cincinnati. I live a housebound life due to my conditions. Though I am completely disabled by my conditions, I work from home doing freelance writing and managing two websites. Lately, I’ve been working on reviving my creative writing career as a poet and fiction writer, as I’ve managed to improve my cognitive deficits enough to go back to writing and editing some shorter works.

I have been happily married for over 13 years and have a grown stepson whom I love very much, but get to see very little. I am an avid fan of the arts (both high brow and pop), music and nature and consider myself a lifelong learner. I am a huge fan of sci-fi and fantasy, love to learn about astronomy, archeology and science, and spent much of my life protesting the abuse of marginalized peoples and our planet.

I hold a BA in women, gender and sexuality studies with minors in ethnic studies and creative writing and a master of fine arts degree in creative writing. Prior to becoming disabled by my conditions, I worked as everything from a cab driver to a college instructor and have experience in the fields of education, communications, business administration, human resources, healthcare and non-profits, not to mention my illustrious career in retail and banking prior to going to college. 

One fascinating fact about me is:

This is always a hard question for me. I think all people are fascinating when you get to know them. I guess the thing that people are usually fascinated the most with is that almost nothing about me is considered conventional: I have disabling genetic disorders, I am neurodivergent, atheist yet spiritual, pansexual and feminist.

Chronic illness(es)/disabilities I have…

I am what is known as a Trifecta Zebra, as I have a trio of rare illnesses that are often seen together; Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). I also have gastroparesis, IBS, Fibromyalgia, ME/CFS, Dystonia, cognitive dysfunction with significant memory loss (both long and short term), coronary arterial spasm,  degenerative disc disease, osteoarthritis, CRPS in my right leg, endometriosis, and intractable migraine. I strongly suspect and am seeking diagnosis for chairi and/or craniocervical instability and autism. 

My symptoms/condition began…

As a child, though my symptoms wouldn’t become really apparent until early adulthood.  

My diagnosis process was… 

Fraught with misdiagnoses and errors. Despite my many health problems which I reported to every doctor, I was not diagnosed with EDS until I was almost 45. I was first diagnosed with fibromyalgia around age 40 and CSF a couple of years later. A couple of years after that, I was diagnosed with POTS. I had to find EDS and MCAS, figure out that I had them and then find doctors to diagnose and begin treating them. 

The hardest part of living with my illness/disabilities is…

The cognitive dysfunction. I had developmental delays as a child and everyone thought I was just plain stupid and wouldn’t do much in life. I had terrible self-esteem and no faith in my abilities. I didn’t figure out I was probably pretty smart until my mid-twenties and finally went to college because I simply couldn’t manage doing the only sorts of jobs I could get, those with a high level of physical labor.

I spent years working toward a career I thought would save me and that I loved more than I could ever imagine allowing myself to love anything. By the time I was done, I no longer had the cognitive ability left to actually do the work I’d been trained for, even if I could find ways to accommodate my deteriorating tissues.

I’m glad I’ve found new things to consume my life with and I can’t say I regret the journey. But the knowledge that I could have had a brilliant career had I the capacity to go on is sometimes too much psychic pain to bear. These days I try very hard to focus on what I can accomplish and find focusing on the present helps me to avoid these hard truths.

A typical day for me involves…

I like to say I live on tilt, because I quite literally have to. If I spend too much time in the upright position, I suffer terrible pain and cognitive symptoms and sometimes have seizures. If I’m flat on my back, I develop pain in the back of my head. So I spend much of my day tilted back in a recliner, working on my blogs and writing, trying to avoid the pain caused by being completely upright or completely prone.

Most of my time spent upright is to cook (I cannot tolerate processed foods at all), do therapies and keep up my movement routines of recumbent bike riding and strengthening exercises. In the evening, I try to relax in front of the TV or with a good book. 

 The one thing I cannot live without is…

Myofascial therapy! I’d be in so much pain if not for it!

Being ill/disabled has taught me…

Never to judge other people’s lives or make assumptions about why someone does something.

My support system is…

My husband is my primary source of support, but we both have chronic health conditions so things can get pretty hairy from time to time, but we usually manage! The remainder of my support comes from within the chronic illness/spoonie community.

I know there are any number of people I can turn to for emotional support or needed advice regarding my health and wellness. I would be lost without them, as I have few others in my life.

If I had one day symptom/disability-free I would…

It would be a lot like Ferris Buehler’s Day Off without the teen angst! A great deal of sightseeing, dancing and celebrating of life, topped off by an exciting and romantic evening of a show, an amazing dinner, more dancing and a carriage ride around Fountain Square. 

One positive of having a chronic illness/disability is…

It’s made me take responsibility for my mental health and taught me what real support looks like, allowing me to walk away from all the toxic people in my life.

One final thing I want people to know is: 

No matter how bad things get, there’s always the possibility that things will get better, as long as you keep fighting. I spent years so inundated by symptoms and disabled by my health that I could no longer see the point of living. I nearly took my own life.

I’m so glad I managed to pull myself out of that deep depression, because it turns out I have quite a lot of life left in me. How did I succeed? I started saying yes to anything that I thought could help, searching exhaustively for solutions. It worked! I found my correct diagnoses and ways to treat my pain and symptoms that affords me a life I can live with.

Now I also have some joy and a sense of my own strength. I may not have beat chronic illness, but I am doing a pretty good job of not letting it defeat me and helping others to also find things to help them.

My links are:

https://zebrapit.com a health and wellness site for spoonies and zebras

https://mykiewritesit.blog a site to display my writing services, poetry and short stories, and discuss writing and blogging strategies and techniques.

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How Myofascial Therapies Helped Relieve My Fibromyalgia Symptoms

Today’s post is from my dear friend Michelle at the Zebra Pit. She’s sharing information about Myofascial Therapies and how they relieve the symptoms of Fibromyalgia. Read on!

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Fibromyalgia is a complex condition that often comes with a plethora of symptoms that can be confusing. Fibromites live with constant pain and for many even a gentle, caring pat on the hand can become unbearably painful.  Fibromyalgia is a common comorbid condition to many chronic illnesses, yet doctors often have no idea how to treat our many symptoms. Could it be the biggest culprit in our widespread pain and the formation of our tender points is a little known bit of connective tissue known as fascia.

Fascia and Myofascial Dysfunction

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Fascia is a network of thin connective tissue that runs throughout our bodies in bands and sheets. It is the tissue that helps keep everything in place and is comprised mostly of collagen. It wraps our organs, muscle and bone, creating dividing lines, holding the perfect position for our organs, while keeping our muscles and joints in proper alignment. Because fascia holds the body together and keeps everything in place, it is responsible for the body’s shape and form.

Just like tendons and ligaments, this connective soft tissue can become dysfunctional. Unlike these other soft tissues, the fascia is connected with the autonomic nervous system and some believe it to be a second, separate nervous and endocrine system, based on study findings. When myofascial tissues become dysfunctional, there are a number of things that can go wrong with the fascia, creating a scar tissue that is generally referred to as myofascial adhesions. This may be caused by mechanical or chemical failure or injury to the body.

The worse this dysfunction becomes, the greater the pain and number of myofascial adhesions. If you have myofascial adhesions, you can sometimes feel them as lumps when you run your hand firmly over your skin. Often, they are sore and painful even when using a light touch. These adhesions can also cause small fatty tumors to form. These fat deposits, along with the way fascia pull on the skin can dimple the skin, causing cellulite.

Myofascial dysfunction can be localized or widespread. If you develop tennis elbow (tendonitis), you might just develop myofascial adhesions around the injury. This is why you sometimes still experience pain even after an injury has healed. It could also grow and become widespread, as this interconnected network of tensile fibers tends to interact heavily. When fascia bunches up around one joint in order to protect it, it sometimes pulls other areas of our fascia out of alignment.

My myofascial problems ran from head to toe, causing awful tension headaches that also helped to feed my migraines, small fiber neuropathy throughout my hands and feet, 14 tender points with widespread pain and my fascia had become so tight that it was actually pulling some of my joints out of position. Neither my right hip nor shoulder would stay in place any longer.  Not only that, my myofascial tissue had grown so dense about my skull that it actually inhibited my natural hair growth and I feared I was going bald. I also had the “family curse” of cellulite and varicose veins on my arms and legs. I had regular TMJD pain and my hands were so tender, I couldn’t even knock on a door without bringing tears to my eyes. I also had tremors, it took twice the amount of time for me to go numb at the dentists, and I was constantly freezing, because my fascia were cutting off some of the blood flow and circulation to my skin.

How Myofascial Massage Helps

Fascia Head
In the 3 years I’ve been doing myofascial massage, I haven’t needed a pain medication stronger than toradol to treat my fibromyalgia pain. My head pain is at an all-time low despite suspected CCI and chiari. While my small fiber neuropathy isn’t completely gone at this point, it’s at an all time low and rarely causes issues. All of my joints function more normally and I spend a lot less time dealing with dislocations and subluxations. My hair and eyebrows are now thick and healthy. I rarely have problems with tremors anymore and even my POTS symptoms improved. I’m no longer quite so intolerant of heat or changes to the atmosphere. I have an abundance of hair and my eyebrows have grown in much thicker, too.

The traditional medicine model of pills and surgery offer poor solutions for these symptoms, but there are a number of myofascial treatments available that could improve your symptoms significantly. These therapies can be done in the comfort and privacy of your own home and there are several kinds of myofascial therapy you can have done professionally.

Each of these therapies work a little bit differently, but the long-term results are still largely the same. Each of these tools seeks to destroy any overgrown fascia and help to restore the myofascial lines to a healthy state. It is not always easy work. Some of the tools require a bit more oomph than others and the toxin release can be significant, as can the bruising. It’s worth it. The relief is greater than any of the drawbacks.

Today’s Options for Myofascial Therapy

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Ashley Black Guru has a number of myofascial tools which are very effective. Her videos and book are a great way to learn about how fascia functions, along with some great techniques. While it’s one of the most strenuous forms of myofascial massage, it’s still one I recommend highly. Since you have to put a little grit into it, it will help to build up stamina, strength and new muscle. This is essential to maintaining healthy joints and fascia as your body heals. Black’s methods and tools are highly effective and you can’t go wrong with her tools, though I recommend you go slow and be as gentle as possible. These tools are self-driven so you can control how hard and fast to go, how often to blast and find the best routine to suit your needs. If you need help choosing which tools are right for your specific issues, take a look at my FasciaBlaster Buying Guide.

Ultra Cavitat

An ultra cavitation machine is a handheld personal use version of ultrasound, which is used to help break up myofascial adhesions and release toxins, along with far infrared light to facilitate in healing. It’s deceptively simple to use, but very powerful. After only 4 sessions, my cellulite has decreased so dramatically, I don’t even recognize my own legs anymore. It’s amazing how something that seems so gentle can mold such terrain so dramatically. It’s also an easier, more leisurely tool to use. The pace of this tool is slow and provides a gentle touch, so there’s no pain involved.

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Cupping is another form of myofascial therapy you can opt for. In this therapy, bell like cups are applied to the skin and heat is used to create a vacuum within the cup. The suction helps to pull and release the overgrown fascia. I’ve heard good things about it from others with fibromyalgia and EDS. Cupping can be a passive form of self guided myofascial therapy, but you can also get this treatment done professionally.

Along with cupping, ASTYM is provided as a professional medical service. According to the website, ASTYM regenerates healing by eliminating scar tissue and helps to regenerate new, healthy tissue. The claim about this therapy is that it is very restorative and powerful, but they don’t share how they actually accomplish the therapy itself.

Ultra Cavitation can also be done professionally and may be more effective than self-use tools available on the market. The ultra cavitation is marketed as a tool for beauty, as it works well to create slimming, contouring and weightloss. In fact, all of these tools are marketed for their cosmetic benefits and I’ve certainly reaped my fair share of aesthetic benefits from using these tools. It isn’t my main concern, but it can be a good motivator. I’ve lost over 50 pounds while fasciablasting; a feat that seemed impossible for me due to lipedema. I’ve also really enjoyed the tightening effects on the only thing that reveals my age; my turkey neck.

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It’s also possible to have a massage therapist do your myofascial treatments utilizing your own FasciaBlaster. The number of MT’s using the fasciablaster is small but growing. Many who don’t know also seem quite willing to learn about it and you can really benefit from their knowedge and experience. The best blasting session I ever had was from a licensed MT.

Performing Myofascial Therapy Safely

With all the services and self-use tools available, it seems like there’s a myofascial therapy that’s right for almost everyone: However, it’s important to note that myofascial therapy isn’t for everyone. If you have a blood clotting disorder, take blood thinners or have a vascular disorder such as vEDS, you should not undergo myofascial therapy. Like all therapies, whether doing a self-use tool or seeing a professional, be sure to consult with your medical team to ensure it’s safe for you first. 

Safety should always be paramount when choosing a therapy for your health. Time to carefully research how to perform these treatments should be taken prior to beginning myofascial work. The risk of injury is greater if you don’t know what to watch out for and it’s easy to abuse such a tool, causing severe bruising, fatigue, toxic overload, injury or other problems. These tools need to be used only as recommended, for no longer than the specified time stated for each tool.

People with fibromyalgia and other health problems need to take these therapies very slowly. It is not unlikely that myofascial therapy will be a bit of a shock to the system, so it’s essential to ease your way in. It is possible to make yourself very sick from detox and overdoing it, causing fatigue and even a flare up in your conditions. To avoid this, start slowly and use these tools more gently than recommended. For pacing, I recommend people begin with one body part (a leg) or section (the abdominals) a day and work their way up to more based on tolerance. Take days off in between if your body is struggling with payback. To get more tips on safety and proper usage, take a look at 23 Tips for FasciaBlasting with EDS and Fibromyalgia.

Myofascial therapy may not be for everyone, but for those of us suffering with the daily pain and other debilitating symptoms of fibromyalgia, it can offer significant relief from our daily symptoms. It can even eliminate some of those terrible tender points which develop and are a criterion for diagnosis. As of today, I am down to only five; so few I no longer qualify for the diagnosis. Myofascial therapy may not address your every symptom, but since I’ve begun utilizing it, my life has been a lot more comfortable and I now enjoy many more symptom-free days.

Resources and Further Reading:

BIO:

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Michelle Curtis is a poet and writer with hEDS, POTS and MCAS. She is managing editor for the Zebra Pit where she writes about spoonie health and wellness, as well as art and culture. She has a BA in women, gender and sexuality studies from BGSU and an MFA in creative writing from NU. She lives in greater Cincinnati with her husband David and two Russian Blue cats. She thoroughly enjoys spending time with her family and friends. In her spare time she enjoys books, movies, art, music and the great outdoors (even when her MCAS doesn’t).