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Georgetown University Hospital MRI Music

As of June 19, 2019 Georgetown University Hospital Radioloty offers music during MRI tests via FM radio only. It is not possible to bring your own music. There is no iPod / Device hookup and no CD player. For tests that require your head to be still, no music is usually possible. The earphones that provide the FM radio sound are big enough that most patients cannot wear them due to space limitations. Together with headphones, the cushions used to immobilize the patient’s head for a clean scan cause uncomfortable crowding. I was not able to get this information on the hospital website or from the radiology department phone operator. I hope this might help other patients who are wondering about how to best handle a long scan. All that said, the hearing protection provided plus barrier cushions for head immobilization made my scan experience entirely bearable. For some reason, lumbar spine was much louder than upper spine and brain. My MRI experiences at Inova Mount Vernon were much louder than my Georgetown Univsersity Hospital MRI experience. That might have been blamed on lesser hearing protection. Be well and healthy, folks!

Caregiver Guidelines for Myasthenia Gravis

Interested in better caregiving for those with Myasthenia Gravis (or even yourself)? This disease is better not faced alone, and caregivers may not know what a diagnosed person is going through. It’s an invisible disease that is not very commonly known, so read on for my informative tips on Myasthenia Gravis care. The emphasis of this blog post is general advice in caring for someone with Myasthenia Gravis with minor to medium levels of symptoms written by someone who has the disease themself.

Interested in better caregiving for those with Myasthenia Gravis (or even yourself)? This disease is better not faced alone, and caregivers may not know what a diagnosed person is going through. It’s an invisible disease that is not very commonly known, so read on for my informative tips on Myasthenia Gravis care. The emphasis of this blog post is general advice in caring for someone with Myasthenia Gravis with minor to medium levels of symptoms written by someone who has the disease themself. Important note: If weakened breathing or dangerous symptoms are coming into play, go to the hospital.

Care Guidelines for MG Strength

Helping out with strength should be a “no brainer” for caregivers aiding someone who has Myasthenia Gravis. That said, I’ll present another side of the puzzle. The lucky MG sufferer will have many days where they have normal strength and truly do not need help with normal, or even strenuous activities. On such days, try to rely on them actually asking for help if they should feel strength waning and only start to help then. It can become very frustrating to have an overly enthusiastic caregiver actually take away the diagnosed person’s “ability” by not letting them do what they can, when they can.

Typical strength aids include setting up a home environments that can be clearly navigated with the addition of possible safety aids such as railings in the bath / shower. Be sure to keep important objects on easy to reach shelves, ideally at or below shoulder height of the MG patient. Chairs placed strategically in the home are important for days when distance walking isn’t possible. A chair in or near the kitchen is also a big help for breaks during cooking or even simply when brewing coffee or tea. Taking it easy is a good way to stave off symptoms. Resting is a must when symptomatic. An important caregiver guideline for myasthenia gravis patients is to watch that the person you’re helping out doesn’t too hard.

Diet, Strength, and Myasthenia Gravis

Moka Pot Joy by Susan Hicks - A celebration of coffee and caffeine from Myasthenia Gravis Caregiver Information blog post
Moka Pot Joy by Susan Hicks – Caffeine is reported to help improve Myasthenia Gravis symptoms.

When caring for someone with Myasthenia Gravis, diet is an aspect not commonly in the forefront of the mind as far as strength goes, but it can be an issue with MG. Here are some diet care guidelines for Myasthenia Gravis. On weaker days set up your grocery shopping list to avoid hard to chew and swallow foods like nuts and pork. Of course if swallowing is a current problem from MG weakness, Myasthenia Gravis caregiving including adhering to a new diet of pureed moist foods is necessary. As a caregiver, food should be cut as finely as possible, and consumed in small spoonfuls or bites. Liquids should be sipped slowly. One bit of Myasthenia Gravis advice in caregiving is to exercise patience with longer dining times.

Temperature Guidelines for Myasthenia Gravis

In my own experience having Myasthenia Gravis, the most sudden, surprising bad effects I’ve had have been caused by heat. Plain and simple. It is very important that someone with MG stay in a cool environment. Caregiver tip: seek out air conditioned environments. That is a hugely important guideline.

Personally, I start to suffer weak eyelids and fatigue in temperatures above 74 degrees. If I sit near enough to a hot lamp, my eyelids will simply start to close slowly, or at best droop slightly. Once on a day in the upper 80’s I thought I could get away with being outside long enough to pat some dogs and then sit on a bench for about 3 minutes. Imagine my surprise when I then collapsed getting into the arrived car, hitting my head on the side of the car roof. I ended up with a concussion. There was no warning that weakness was coming on, the collapse was so sudden. I had not followed my caregiver’s advice to stay inside until the car had arrived.

Made in the Shade

When outside on warm days, stay in the shade. Myasthenia Gravis care includes using cooling garb (gel pack neck wraps and even cooling jackets are best) in environments where air is warm-to-hot. Gel packs have a time limit on them and are still not as good as just being in a cool place, but they may give the diagnosed person a bit of freedom to get out and about. Drink iced liquids to keep body temperature down – water is best. These are all good items to have on hand in the car when traveling in warm climates. They serve as back-up cooling if a car breakdown occurs. Caregiver guideline for myasthenia gravis: Traveling as a Myasthenia Gravis patient can take planning and coordination.

Hot Hot Hot - Knife painting by Susan Hicks in Myasthenia Caregiver Guidelines to illustrate how heat influences Myasthenia Gravis symptoms
Hot Hot Hot by Susan Hicks – Painted as art therapy for Myasthenia Gravis

Air conditioning is a must have in the home of an MG sufferer. Myasthenia Gravis pro advice: Call and inform your electric company that the household should get priority for getting power restored after an outage for health reasons. They have a form that can be filled out. Indoor air conditioners are a good solution for back-up during possible heating / cooling failures in communities that do not allow window unit air conditioners. If looking for a rental apartment, try to get a unit with individual heating / cooling control, so that you can switch from heat to cool without waiting for a building-wide switchover. Let the management know the rental is housing someone needing this Myasthenia Gravis care.

Guidelines for Less Stress

I cannot emphasize this Myasthenia Gravis aggravating factor enough as a part of MG care. Stress and emotional upset plays a huge factor in causing MG weakness and appearance of symptoms. If you know someone with Myasthenia Gravis, be a Mensch and leave them in peace. That’s really the kindest thing you can do emotionally in caring for someone with Myasthenia Gravis. We all know what general stress is, but as a caregiver you should also be aware of emotional stress.

Caregivers themselves can unwittingly cause stress. If you are caring for someone with Myasthenia Gravis, don’t be a “helicopter” caregiver. The disease takes so much freedom away from the sufferer that any bit of freedom and wiggle room is welcome. Of course it’s awful watching someone you love or care for go through the grim aspects of the disease, but symptoms fluctuate. It’s possible to have a really bad day and then be stronger the next. Let a good day Myasthenia Gravis day be a good day. It does happen. That’s a kind guideline in MG caregiving, and allowing and maintaining hope is an important part of Myasthenia Gravis advice.

It's Chaos Be Kind T-shirt from Melasdesign on RedBubble
Myasthenia Gravis can feel like chaos. Always be kind and patient, with yourself and the person in your care. “It’s Chaos. Be Kind” by Susan Hicks.
Being Myasthenic Can Cause Stress

So stay calm and try to do a certain amount of riding out symptoms. For a newly diagnosed patient, it will take a while to recognize personal symptom patterns and causes. There’s new medicine to deal with too, and some are tricky beasts. Taking too much Mestinon can actually cause symptoms. Immediately upping Mestinon dosage with new symptoms is not necessarily the best way to go. Follow your doctor’s advice until you begin to recognize the ebb and flow of symptoms. Get in touch with your doctor if there is a trend for the worse. Try not to agonize about every change in symptoms. They may ricochet unpredictably from day to day and hour to hour. They also might not. You will learn to recognize when to worry and when not.

Doctors appointments can be very stressful for some MG patients. It is best if two people are at each neurologist appointment. This aids in understanding and can also act as moral support for the diagnosed patient. Another stressful aspect of neurology: What a neurologist counts as “strong” is not necessarily what normal “strong” is. In office visits, the emphasis is more on immediate weakness during testing. In the hospital, they probably won’t want to keep you inpatient beyond the time that a direct crisis emergency is being warded off. Other weakness is to be cared for at home, or out of hospital. Those are some hard facts of Myasthenia Gravis advice.

Caregivers should Respect Limitations

Respect the limitations of the Myasthenia Gravis patient. Another important Myasthenia Gravis caregiver guideline, especially for partners who are more active late in the day is to be patient with waning strength as the day goes on. In symptomatic phases, going out at night might not be the best idea.

Up Down Sideways - Art therapy for Myasthenia Gravis by Susan Hicks - Exploring limitations and care in those with Myasthenia Gravis
Bright cheerful colorful emoji shape abstract artwork with arrows and squiggles in tropical colors. – for sale on RedBubble in the Melasdesign shop.

Pay attention to medicine timing and help keep a regular schedule. In Myasthenia Gravis caregiving, when symptoms are bad, it’s easy for the diagnosed patient to lose track of time, or simply be a bit out of it, because they just don’t exactly feel perky. I always have my alarms for the day set the previous night on my cell phone, starting from my wake-up alarm time.

Long term caregivers should learn the person’s symptom patterns and sensitivities. Myasthenia Gravis care includes respecting limitations of the person you’re caring for. As a caregiver you shouldn’t be pushing them in a direction that might be disadvantageous.

That’s a wrap for my edition of caregiver guidelines regarding Myasthenia Gravis

Darkness and Light

Join me on this exploratory trip down memory lane, with its potholes and traffic jams, by way of a self-portrait art from 1991. This quickly executed scrawl on graphed notebook paper encompassed so much of my life experience in one sentence: It’s taken me 21.5 years of seeing this face to even get this far. “This face.” It’s almost like it was one of multiple faces, or maybe not even my own image. Read on for my interpretation of the drawing, 28 years later, and how my perception and individual experiences influenced my personal philosophy.

Join me on this exploratory trip down memory lane, with its potholes and traffic jams, by way of a self-portrait art from 1991. This quickly executed scrawl on graphed notebook paper encompassed so much of my life experience in one sentence: It’s taken me 21.5 years of seeing this face to even get this far. “This face.” It’s almost like it was one of multiple faces, or maybe not even my own image. Read on for my interpretation of the drawing, 28 years later, and how my perception and individual experiences influenced my personal philosophy.

Self portrait, Susan Hicks, 1991

An Impromtu Self Portrait

This self portrait drawing was the result of sheer procrastination. I was studying abroad in Germany and was a bit fed up with studying Hegel. Not just Hegel’s philosophy, but Hegel in German. Daunting. I drew this from my reflection late at night in my huge dorm window, with my head between the drawn curtain and glass. I call this a win, in hindsight, considering I hated even seeing myself in the mirror. Maybe looking out into darkness helped me see.

When everyone has this idea of what you’re “supposed to be,” how can you see yourself clearly? It can rob you of your individuality. The notion that “this is how it is, and you are not to do, or be otherwise” provides a sickening, dim, artificial light of a million tones and impossible angles if your individual truth is not already in line. I loved the view of the dark night from that window, on the many nights I was robbed of sleep from anxiety and stress.

Art and Perception

This thing of seeing yourself. An artist’s perception is key to their art – both external and internal. The more you can see flows into what you let others see through your art. I had seen art history classics in books and magazines, and had visited my share of top art museums in the US, London, and Munich. In my hometown the local art scene favored colonial gardens. I was more satisfied with abstract masters, art films and videos, and art connected to music; album covers, concert posters, fan art. I admittedly hadn’t seen much outside of family trips other than school, church, and limited campus forays by the age of 21. I did see myself every day to tidy up, but only briefly.

Self representation failed me. I knew I absolutely did not fit the trappings of a “proper Baptist woman,” but that was the eternal pressure – the eternal hellish pressure. How can you see your actual self when you are constantly discouraged or even banned from being it? The proper Baptist woman face is one with a never failing smile, or at least pleasant expression. This is demanded. In many cases, that face was a lie, on my part and on the part of many others. In hindsight, others seemed to trust their perception of this.

Yes. I’m Different.

I am….. different. Now I wouldn’t have it any other way. I have distinct values which I vehemently uphold for myself, without demanding them of others. I have no patience for bullshit in the guise of externally proving how good and righteous you are, or keeping up with the spiritual Joneses. Spiritual peer pressure is inexcusable to me. I’m apparently so different that every push and prod, jamming me into the expected societal mold was akin to hacking “me” into bits.

Creativity other than for “sacred” ends was seemingly the most irritating thing I could possibly do. It was once vehemently stated “Why should you get to be an artist? I wanted to be a musician and didn’t get to!” How dare I? Nonetheless, I have an undefined faith. As much drama and illness as I’ve been through and face daily, I don’t give up. There’s a reason for getting through, but I’m not sure it’s teachable, law driven, or precisely written in a book. Maybe I got that from staring into the dark.

Noel

Art was my religion. Art and music. Color. Sound. Expression. Individuality. That brought me peace. Integral to my being. Born to be. Peace. Noel. Love. That’s what religion claims to promote and provide, but in my almost featureless congregation I often felt surrounded by exclusion, prejudice, and staggering narrow-mindedness. Somebody once said something about “well meaning, but highly misdirected people.” So many things that were said to be in the name of LOVE were so damaging. Sheep. Flock. Not known to be very concerned with the notion of the individual.

Born to Be

Born to. I wasn’t really supposed to be born anyway, as a 2 month early premie. If I bucked the odds that way, maybe it was more MEANT to be that I’m here than the other way around. This is my argument to myself. It so often seems the opposite. Was it that early birth that put me behind the 8-ball healthwise? Did it stack the deck for friction and unaccepting attitudes in my family?

Or was it like a trained professional once counseled me? – Keeping a child from being what they are is profoundly damaging. Whatever the thing about being a musician was, yeah. Profoundly damaging.

Damage. Not seeing yourself clearly. Self-perception. The individual. Darkness. Hegel.

I Like This Now and So Does Somebody Else – A Dream

Melasdesign meditation art as featured on RedBubble.

Melasdesign art “I Like This Now,” featured on RedBubble.

A personal favorite work of mine got featured on RedBubble. Read all about it. Meditation as inspiration makes pretty things. You can buy it too.

A Windy Day in Tucker County

Welcome to my little expose on my latest abstract landscape painting in acrylics called “Windy Day in Tucker County.” I’ll discuss my ideas and inspiration for the mountain setting windpower theme, materials used, color choices and a new direction in my work that is a return to what I’ve always loved to do. I’ll also touch on creating art as a disabled person.

Welcome to my little expose on my latest abstract landscape painting in acrylics called “Windy Day in Tucker County,” currently for sale in the Melasdesign Handmade Shop. I’ll discuss my ideas and inspiration for the mountain setting wind power theme, materials used, color choices and a new direction in my work that is a return to what I’ve always loved to do. I’ll also touch on creating art as a disabled person.

Windpower in the Mountains

This painting is an imaginary view of the moutain tops in Tucker County, West Virginia. Love it or hate it, the windmills on the mountains are an impressive view along a beautiful Appalachian landscape. I have always loved them, since my first glimpse of one in the Thomas Dolby video on the then great MTV for the song “Windpower” in 1982. That video is nowhere to be found (by my searching), but have a listen to that piece of synth pop gold below.

I’m fascinated by energy created through nature’s motion, from hydroelectricity to wind power. It is non-evasive and works with Mother Nature’s natural talents. The technology involved is also impressive. I’ve had the opportunity to stand within about 30 feet of the base of a wind turbine, and it’s simply mesmerizing. In the way Paul Klee painted “Revolution of the Viaducts” I have pondered creating a “Revolution of the Windmills.” We’ll see.

Pros and Cons of Windpower

As for “clean energy” vs. coal, I prefer clean energy, but it also would have been very proper not to have green energy politicians throw out a policy that fueled the statement “we’re going to put a lot of coal miners and coal companies out of business.” According to the linked article, the policy idea being addressed in that comment was going to deal with bringing new economy / jobs into coal areas.

Love them or hate them, windmills are ever present along the peaks around Thomas, West Virginia.

With that prideful gloat, Ms. Clinton stated in part that existing coal economy would be replaced with jobs in the new economy. I have the impression that part of the proposal was never actually acted upon. Not to single Ms. Clinton out, this political posturing happens on both sides, and is so rarely backed up for the benefit of the “little guy.” This is a HUGE problem in US politics, clear across the board.

Coal is / was indeed a way of life, and a way of life that people survived from. Modern mining is requiring less and less workers due to new technology. That is making even the open mines need fewer workers. Windpower, which is wonderfully clean and generates so much energy, needs even less manpower than the diminishing manpower needed for mining. It’s all a huge conundrum in my mind, and like so many things, I wish I could wave a magic wand and make all of this work for everyone.

Painting While Disabled

I love to paint. I do not do it nearly as much as I’d like to for 3 reasons. First of, I battle two neuro-muscular disorders, currently bizarrely opposite in effect; One (Myasthenia Gravis) leaves me unable to move through weakness and the other leaves me so stiff and spasm ridden that I can’t move in a relaxed, non-jerky manner. Yayy.

On the days when I can paint at all, I love to paint. Painting is not cheap, so if my muscles are misbehaving, it’s also not worth trying to paint much, because of the cost of potentially wasted materials. This is a reason digital media, from Photoshop to drawing apps, have been so great to use. Thirdly, stockpiling stretched canvases takes a lot of space. I did not have any outlets to show, store, or even sell my original paintings. Now I am proud to offer Windy Day in Tucker County in my own Handmade Shop. Thankfully that is becoming a possibility. Listen to the video end for a bit of news on that subject.

View this post on Instagram

My first “untaping” video. 🙂 The big reveal is an exciting thing for an artist, so I thought it would be a great way to “premiere” my latest work “Windy Day in Tucker County.” Hear my thoughts on and inspiration of the painting and get a bit of news about where I’ll be offering my art for sale in person this Memorial Day weekend Saturday. How do you like it?⁣ ⁣ PS – Artwork will be posted for sale in the Melasdesign Handmade Shop. Stay tuned. ?bit.ly/HandmadeShop⁣ ⁣ #melasdesign #handmadeshop #untaping #video #art #painting #landscape #windpower #windmills #wip #reveal #contemporaryart #artspringwv #mountains #tuckercounty #thomaswv #wva #artist # #artwork #instaart #artoftheday #creative #fineart #modernart #color #instaartist #acrylic

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I am not a trained painter and have only learned about paint and mediums through experimentation and reading about mediums online. I was really happy to have some good conversations with the kind folks at Plaza Art Fairfax about what to use to get the visual effects I wanted in a way I could manage with my style and capabilities. On my last visit, the big pro-tip was my introduction to Posca Markers. Due to my neuro-muscular disease(s), I struggle with fine control of fine brushes and was always aggravated at attempting to make good lines the way I can when I draw.

I had gone into the shop that day aiming for acrylic inks (which I had just read about), but I found they were for true traditional “pen and ink” techniques. Happily, I was directed to the Posca paint pens. For my own purposes, these are sooooooo much nicer than sharpies or craft store level paint markers. My only unknown at this point is whether they have the tendency to dry out like a lot of paint pens. The pro tip for that: Store them lying flat (and I read that the tips can be soaked over night in water too). I’m keeping my fingers crossed.

Blue Skies and Prismatic Clouds

Color: I wanted this painting to be semi-realistic, but not boringly so. It has a bit of fantasy to it, so I had fun with the colors. I didn’t have any concrete idea of anything when I started, other than peaks and turbines. I love the playful aspect of art and how paintings develop. I had started with a fairly normal blue sky with clouds, but my mind went to a beautiful day in Thomas, West Virginia where the small white clouds were low against the bright blue sky and the wind was fraying their edges and even making some grow larger before my eyes with prismatic effects within. A wonderful delight to see. From that angle, there is a lot of personal inspiration in this painting, from the landscape of Tucker County to the sky above.

Melasdesign Handmade Shop - Original 8x10 painting for sale by artist - Windy Day in Tucker County
Windy Day in Tucker County – Signed 8×10 painting in acrylics on heavy cotton bond paper.

Lastly, I have decided to get away from always painting on stretched canvas. This is for several reasons. The “on paper” format will be more mail-friendly, show and shop friendly, and should give potential customers more freedom in their framing and presentation choices. I’m also working on creating more “small” paintings for the same reasons. If you are interested in buying this original art for yourself, visit: or stop by my booth at the ArtSpring Festival Art Market in Davis, WV on May 25, 2019.