Our Next Chapter...

The overwhelming amount of issues plaguing the disability community have buried me alive. The most painful of them come from supposed allies, people who wave bright banners of social justice only to throw the disabled under the bus when it really counts. Fighting against this kind of injustice has made me a lot of enemies, and frankly, I can’t do it in the same capacity any longer.

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Why I stopped Writing - The Truth

CW: Suicide

Dear Sparkly Friends,

Have I mentioned lately that I love you? Because I do, and I don’t say it enough. You’ve helped keep me afloat these past three years of...well, not silence, but...let’s say muffled screaming. There’s no way I can sugar coat it. It’s been Hell. No exaggeration, there were dark times that I questioned if, years before, I had been successful in a suicide attempt, and what I was experiencing was the likes of Annie’s fate in “What Dreams May Come.” Except, I was even more screwed because I died without marrying my soulmate, so I was just stuck there forever, in a nightmare-loop.

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Frill-Ability's Purpose and The Importance of Advocacy

On November 13th, I was honoured to receive an invitation to the Tech Awards Gala, an awards ceremony where laureates were recognized who showed in an extraordinary way that with a good idea, hard work, and an entrepreneurial spirit, you can greatly benefit society. Here are a few highlights from the event. (See what I wore here.)

I am more inspired than ever to make Frill-Ability a resource for the disabled community and a voice for individuals with disabilities. As this website was recently constructed, you might wonder just what I'm doing here and furthermore have a hard time taking me seriously. What's with all of the cutesy stuff, anyway?

First, I have been reaching out to companies that have products that I believe can make our lives easier, have the potential to do so, or spread messages of awareness. As I create connections, I will review products so that you can become aware of some of the most effective tools in the current market. These products and tools may be in the range of assistive devices, general educational tools to empower minds of all ages, fashion that is kind to our body or spreads a special message, or wearable tech that helps us monitor our health while being stylish and having fun.

Secondly, I want to share your story. The only way to become more aware is by educating and learning. Let's do this together. Tell me your uncommon journey, how you would like others to see your disability, and most importantly how you make good with your ability every day. You can do this by emailing me. The only rules are that your thoughts are well-written, contain no offensive language or content, that your text contain no more than 500 words. One picture (which may be a collage) and/or one embedded video, following the same rules, are also allowed and encouraged.

Lastly, I want to bring my skill as an educator to you in a special way, but for now, that is a secret! My B.S. is in Natural Science with minors in Chemistry and Mathematics, I have some graduate level Library Information Science experience, and I have spent most of my professional life in education, formally and informally, in academia, the library, and museums. This is my greatest passion, showing people that something they thought previously they were not capable of doing, they are and more. I am particularly focused on the STEAM movement and a design challenge learning atmosphere. Please stay tuned! If all works out, it will be wonderful!

I'll also be attending events relevant to the disabled community (as much as I can) and covering them for Frill-Ability, so you can be informed about all of the inspiring speakers, exciting products, and upcoming projects that you might not have been aware of otherwise. My first will be the Abilities Expo in San Jose which I introduce in the following video:

In the last two days, after years of feeling underestimated, discriminated against, and ignored by a variety of individuals, someone who I admire and respect beyond description put their faith in me. More than that, they took time to listen and treated me as an equal. Disturbingly, when some people saw this, they were surprised and wondered how in the world I could accomplish that. However, there was a certain satisfaction in that alone, that such a person as myself could do such a thing, because maybe they, that group that finds us lesser, will finally start to notice.

There is a certain type of human that no matter how educated/experienced/talented/kind/productive/A+ human you are, if you do not fit into a certain category (especially if you start to receive praise from other sources) they will find any reason to reject or ignore your existence.That is something about which I would like to speak in detail at another time, however, for me, that is one of the worst parts of being a person with disabilities, and the last thing I need in my day.

We need disability advocacy because they are the type of person who finds a legal way to leave your workplace inaccessible.We need advocacy because they are the people who stare and ask “What’s wrong with you? You don’t look sick.” We need advocacy because they are the people who take away our voice and insist we cannot do anything for ourselves after insisting time and time again that we can. Those types of negative attitudes are what I am dedicated to combating, and I promise to do my best to make good with the ability that I have so that I can serve you with every gram of it.

I look forward to working together with you to create a more accessible, happy landscape for all us.

Sorel Estrada Volpe

Frill-Ability.com

Make Good with Your Ability Today

Health Update 1: Compression Tights, New Medication, and Natural Alternatives!

Last post I mentioned that I was going to go back to my old pain clinic's doctor sans-insurance, and I am sure glad I did. I saw her on Wednesday, and between my visit with her and some lifestyle changes I am making, I am already seeing some improvements. It is right in time because unfortunately, I am experiencing some odd flare-ups I have not had at this point in my progression. I am a little tired at the moment and having trouble adjusting to my new medication, (unrelated to the flare-ups,) which I will discuss the pros and cons of in a little bit, so please excuse any lack of cohesion and the rambling that I'm sure I'll do. 

What's most important to me is balance. If I'm going to have gross chemicals in my body, I want to also try homeopathic remedies. As these medications are causing unpleasant side effects, I need to combat them with diet, exercise, and being kind to my body. Here's a little of what I have been doing.

Compression Tights from 2XU...

I follow some other push girls (the term for super cool ladies who use wheelchairs as an assistive device, full or part time) on Instagram, and one made me aware of compression tights/leggings by a company called 2XU. Now, I had been aware of boring compression tights, and I have a compression garment that I do not wear from when I went to the Mayo Clinic in 2011. I do not wear it because it's sort of useless to me. My VMs go to my hip area, and the stocking only goes to my thigh, so in some ways it makes my pain worse.

Compression garments are made to provide extra pressure and increase circulation to an affected area. The strength of each garment is usually measured in millimeters of mercury (mmHg) in the higher medical grade realm. 2XU contains medically graded materials, but it did not list the pressure levels/strengths. There are different varieties of tights the company offers that sound by the descriptions to apply more pressure, but I have yet to experience them. (The above photo is linked to the website.)

After seeing hers, I had to get a pair of my own. Style, comfort, and something that would help my condition? I will take all of those, please. From wearing the tights/leggings I have, I am over the moon. They are on the lower end of pressure, the most basic pair they offer, and I would guess around 10 mmHg, off-hand.  My pain definitely decreases when I wear them. I was even able to take a very long drive with several stops and still be functional. I was using my chair for half of the day's errands, but I only took one Norco the entire day. Swelling stayed down a little as long as I kept them on. (As soon as they came off, that's another story...) I consider that a great success! Here's a look at the fit:

Sizing is pretty simple; they have a nice chart similar to pantyhose charts. I was an XS, kind of close to the S, but I went with the XS. Glad I went with the XS; they fit nicely. The chart goes by height and weight.

Sizing is pretty simple; they have a nice chart similar to pantyhose charts. I was an XS, kind of close to the S, but I went with the XS. Glad I went with the XS; they fit nicely. The chart goes by height and weight.

2XUtights2.JPG

Western Medicine...

Another reason my pain level was a little down was due to my new medication. I expressed concerns to my doctor about Norco/Vicodin being my everyday pain medication. I didn't like what it was doing to my body and how often I had to take it. My short term goal was to have something that was longer lasting in my system. My options for that were either morphine or something I had not heard of, methadone. Morphine is expensive and also very scary. Methadone is cheaper and less scary. We went with methadone. 

It is still scary, and I am not sure I am a fan. It makes me really drowsy, agitated, and I think it was giving me weird dreams/hallucinations this morning. My research was bringing up some not great things about it, but none of these medications are great, so I guess this is just how it is. When it comes down to it, It will depend on how tolerable the side effects are and if they outweigh the alternatives. It needs to build up in my system over time to become effective, but the same is true of the side effects. I think I am feeling some relief from it. It's a little unclear.

One side effect can be water retention and decreased metabolism, so I am trying to hold myself more accountable for my diet choices and exercise more with the help of myfitnesspal on my iPhone. It's actually a lot of fun, and I'm realizing things like, "Oh, I could be eating more of this," "I don't really need that right now,"  "I have [x] amount of time, I could take a roll around the block!" When I stop and enter in every item before I eat it, it makes me reconsider my choices because I am forced to look at individual ingredients, nutrition facts, or at least calories. You can even add your own recipes for home-made food or search for similar things when you are in a rush.

My 9/26 Diary entry - If you enjoy vegan food, try Nut Tacos; they are AMAZING!

My 9/26 Diary entry - If you enjoy vegan food, try Nut Tacos; they are AMAZING!

Natural Remedies

My pain clinic doctor doesn't just prescribe pain medication; she makes makes sure you are well rounded. When were first introduced early this year, she referred me to my clinical psychologist, talked to me about diet choices and exercise, and suggested some supplements for my particular needs, fish oil and magnesium. The fish oil is supposed to help with my joint pain, and the magnesium should have circulatory benefits. (See these articles.) I'm not positive if it is working yet since it has been the weekend, but I think this week will be telling going back to work.  

One of my friends on Facebook (who is incredibly helpful, kind, and adorable!) suggested that I try kombucha for inflammation as well. I had never heard of it, but I dove right in, went to Sprouts, and picked up a bottle. I fell in love at first sip because sour things are my favourite. A few minutes later I felt wired and goofy. I thought it was a fluke until I had another try of a different brand---it was no mistake. This stuff is powerful! But what is it?!

Find them here: http://www.synergydrinks.com/

Find them here: http://www.synergydrinks.com/

Kombucha is a fermented tea created with a mix of a symbiotic colony of yeast and bacteria. (Wikipedia) There is some debate over its safety and health benefits, but my advice would be to stray away from home-made kombucha unless the maker is very knowledgeable about the process. Because it is fermented, it also has a very small alcohol content, but not enough to be considered an alcoholic beverage. That said, if it is left out the the refrigerator, it can ferment to about beer level, according to WebMD. (I'm usually not a fan of WebMd, but I don't mind it for some things.) 

From what I have read, there have not been any long-term studies done on the effects of kombucha, so we do not know its effects except for the few negative reports that surfaced. However, Patti Neighmond, Health Policy Correspondent at NPR touches on what we do know:

"...Nevertheless, most kombucha drinks contain live bacteria. And evidence is mounting that friendly bacteria or probiotics aide digestion and possibly even strengthens the immune system.

These good bugs "actually live inside of us and help digest our food, digesting particles we can't digest on our own," nutritionist Reinagel says. "And they actually produce certain nutrients for us, which is a very nice trick."

It has definitely has only positive effects on my health thus far. This is really interesting to me, so I think I will take extra note of note of how I feel when I drink it and keep you updated. Have any of you ever tried it?

Getting Things Done

Lastly, I did a couple important things I had been meaning to for a while, and I did them alone! 1. I got a placard for my car so I can park in the ADA spots. (Note how I do not say the H word. I will make a whole post for that and how much I dislike the word.) 2. I loaded my chair in and out my car on my own!

Lifted myself from my chair into the trunk area, (I have a Nissan Cube,) pushed down the back of my chair, turned the chair around, lifted it over my body, and passed it behind me. Loading done!

Lifted myself from my chair into the trunk area, (I have a Nissan Cube,) pushed down the back of my chair, turned the chair around, lifted it over my body, and passed it behind me. Loading done!

I don't know why my old doctor gave me a temporary, but at least I have something for now. My PC Dr. doesn't do these, so I will have to go through my current GP for a permanent one.

I don't know why my old doctor gave me a temporary, but at least I have something for now. My PC Dr. doesn't do these, so I will have to go through my current GP for a permanent one.

Today I had wanted to do a lot more things than I actually was able to do, but as I mentioned, my medication has been messing with me. I was determined to at least write this blog, practice rolling/walking with Marvin, dressing up, and recording a tune that I sang while playing one of my ukuleles. Before I leave you with that video, thank you again for supporting me! If you don't mind sharing, how do you manage your health on a daily basis? What kinds of fitness routines have you found that are kind to your body?

Don't forget to make good with your ability today! <3


Love,

Sorel Estrada Volpe