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

Make Good with Your Ability Today

Making It: My Health Story and Bits of Advice

This blog is here not just to talk to you about the things I make, but how I, as an individual with disabilities, make it through daily living. There aren't enough voices for people with disabilities out there, and if there's any way I can make a difference, I am going to do my best. I have learned that as a patient, you are your own best advocate.

If you are someone like me, what does that mean? It can mean that some days your struggle is lonely because doctor after doctor disregards you. It requires intelligent research. When you finally get a solid lead or a diagnosis that sounds like it fits you, get to the library! Search through scholarly articles like it is your job! (If you have access to those search engines because of school, fantastic!) Google specialists, trials, support groups, anything that could help you learn and make a positive difference in your life. I also like using the pages of reputable organizations that support a chronic disease or condition to learn more about it. How do you know which are the good and bad? Check the sources. Did a doctor write it? Did the person compiling the information cite their references? These are key questions to ask.

Here is a little background on my story, taken partially from an old entry on a different blog: 

I was born with klippel-trenaunay syndrome/venous malformations in my right leg. They are benign vascular tumors that swell with blood, replace the muscle in my leg, and span from my upper knee to my hip. It's not a hereditary disease, and it's very different in every patient who has it. Some patients may have lesions on their skin, others have vast differences in the length and width of their limbs, some cases are more severe, and some are less severe. (They can appear in the arms as well as the legs.)

It also effects the ability of each person uniquely. For the following reasons, I have difficulty walking:

1. The effected leg has less muscle than a normal leg.

2. Some of the tumors interfere with the knee joint.

3. The tumors are very painful. Some days are better than others; it varies greatly, even within a day. I can sometimes predict what will cause pain or physical stress, but it's often unpredictable. 

A few of those predictable things that effect my condition negatively are increases in estrogen, remaining in any one position for extended periods of time, overuse, under-use, and changes in elevation/pressure. 

Here is what my leg looks like:


 When I first moved to the Bay Area from Chicago, it took me a long time to find a good doctor, but I was very thankful to find an amazing pain clinic that gave complete care and had me on a good treatment plan. Unfortunately, when I turned 26, my insurance under my parents ended, and I had no choice but to switch to the insurance that my work offered. Because of my pain issues, I have been on a medication that is a narcotic for years, and the clinic I like decided to a) keep me on it and b) increase the dosage. It was not their idea to have me on this long term (i.e. the rest of my life/many more years). It is too short acting of a medication. I imagine as it failed, they would explore other medicinal options, and as those failed, I was personally pushing for a spinal implant when things got bad enough at that very last step. She also used diet, herbal supplements, and psychological therapy as part of the regimen.

Unrelated to the pain, I also have legitimate mobility issues. My ability to walk wanes more and more every year. I can do short spurts, but the longer I use it, the more I limp, and at a point, the leg gives out completely due to a combination of the lack of muscle mass and the swelling. (I use a wheelchair about half of the time.) Many people ask if I could build up the muscle to make up for it, but the two things inhibiting that are the following:

a) it can only take so much activity before it is swollen to a point where it is useless, and

b) imagine if all of those white spots in the MRIs were removed---my leg would be like Swiss cheese. It's not a matter of it being slightly deficient; the muscle never grew where it was supposed to.

Other people ask if I have used a compression garment or tried PT. Yes, I have tried a compression garment, and my lack of success was because of the span; it was only thigh high. I recently found full tights, so I am looking to have more success with those. I will answer the second portion in a moment.

When I moved to the new insurance company because of my work, I thought I could no longer afford my old doctor, and when I tried to introduce myself to various new doctors, (it is a company where all of the doctors, hospitals, pharmacies--everything--are enclosed in one system, under one name, and you cannot leave it,) I wasn't just met with the understandable hesitation I expected, but I was given the wrong dosages of my medication, unclear information, told my case was too complicated, and told repeatedly that "new institution", in different forms, was moving away from narcotics as a whole.

When I presented my case, I explained to them my conditions (I also have a non-epileptic seizure disorder), the issues it caused me, (not just pain but physical impedance,) and how I needed complete care. Yes, I needed the medication I am on for the meantime, but I also need PT, a better wheelchair, opinions about my hip and back pain, suggestions about better medications for the future, and answers to why I was having severe digestive issues.

My first two doctors tried to give me another standard wheelchair from a medical supply company even though I specifically said I needed a PT to fit me for a better wheelchair than what I had from a company like TiLite (the chair for which my parents and I ended up splitting the cost.) I never got a PT referral from the first two in general. All of them have ignored or taken back what they said about my back issues. Only this last one is sort of paying attention to my mobility issues and referred me to a PT and person to figure out the digestive portion. (It's an unpleasant procedure, but I am happy it is being investigated.)

   Angelic Pretty Model RinRin Doll and I with the personalized key necklaces I made for her and I, and me in my sweet new Aero T chair from TiLite! I'm wearing the Sweet Girl Room OP by Angelic Pretty; I picked the key as the item from the print, and then I designed the key to my liking. You may also recognize the pendant on my cane from the main page, made by me. :)


Angelic Pretty Model RinRin Doll and I with the personalized key necklaces I made for her and I, and me in my sweet new Aero T chair from TiLite! I'm wearing the Sweet Girl Room OP by Angelic Pretty; I picked the key as the item from the print, and then I designed the key to my liking. You may also recognize the pendant on my cane from the main page, made by me. :)

This last doctor also did not want/neglected to refill my medication when I requested a refill. With this new institution, you have to wait until the app says you are allowed to request a refill--normal. This is typical for any medication. I filled it on the 23rd of August, and on the 11th of September, I noticed I was a little low, but not out, so I requested a refill as the app said I was allowed to do so. (I thought to myself, too many times, I let myself get to the last pill or two and get in a bind, not going to let that happen again.) On Friday, the 12th, I had an appointment with my doctor, so I thought it would be perfect timing. We had one appointment previously, but it was over the phone, I figured it would be good for us to meet, and I had clearly a variety of issues to discuss. I also put in for a refill for my other medication because I noticed it was up for a refill too.

The medical assistant noted my Rx requests in the system when she saw me, and usually at new institution, at the end of an appointment, you can go to the pharmacy, and pick up you medications. The doctor and I had a mostly good discussion, but he reiterated what he did on the phone the couple weeks or so before about narcotic medication. I told him about my orientation with the pain clinic, my old pain clinic, and my desire to find other methods for pain relief as I was concerned about what this one was doing to my body and it's decreased effectiveness. I was told some general information and that the pain clinic would handle this kind of thing, an appointment I would not have until October 3rd. He also, like the other doctors, did not have an interest in requesting my records from my doctor who was outside of this institution and therefore to which had no access.

Directly after my visit, I went to the pharmacy, the Rx has not been approved, and the other, my seizure medication will take some time because it is a special order. (I am sensitive to the generic and need the brand name.) By Monday, the 15, I am out of my medication. I had noted to him and his assistant that the medication is becoming less effective, as expected, so some days I can manage with the 2 pills a day, but others I take 3. On a terrible day once, I had to take 4. (That usually happens during that time of the month because of the hormones further worsening everything.) On other days, I'll manage with one and suffer. This is why I can't get it to stretch the entire 30 days, although I try.

On Tuesday, I get a call saying my Rxs are ready. I am already in withdrawal at this point, and I have my SO take me to the pharmacy. Only one medication is ready. My doctor still has not approved the pain medication. I don't actually get the medication until Wednesday evening, and I only find out it is filled because I called. Even though I have it now, I am still very sick and am having trouble eating. When a person goes through withdrawal, it's like food poisoning. Every time I tried to eat, I instantly regretted it. Now, I am afraid to eat, but I am starving. I have some PediaSure to hold me over, and I am hoping by the end today to recover.

Most frustrating of all, I have missed three days of work. That angers me more than anything. Going to my job everyday is my independence. I fought hard to get to the point where I am at, and when I am reduced to feeling like I both a mother worrying constantly about the countless needs of her infant who is also myself because I cannot eat, sleep, and sometimes do things for myself, I feel robbed. My job (in museum education) is one of my passions; I like being there. I need to make money, but if I didn't, I would elect to be there. I take this medication (that I don't like very much) to be a functioning member of society in hopes that there is a better solution out there for me one day. 

There is some positive to all of this. I contacted my old pain clinic, I can afford to see my old doctor without insurance, and they can fit me in next week. To distract myself from the unpleasantness of being ill, I had some opportunity to work on something else I enjoy that applies to this space--3D printing! I'll have to find a way to connect my Instagram feed to here so you can actually see what I have been working on! I also want to thank those of you who have reached out to me on Facebook, the conversation is always appreciated! You keep me company when I'm down!

I don't know what difficulties I will face next or (better yet) what I will overcome, but I would like to continue to share them here with you alongside shop updates, 3D printing adventures, and a frilly thing here and there to keep things light and happy. Everyday, I try to remind myself that whatever I do, to do good. If I've ended the day doing something good, then I can feel okay with myself. When you are feeling stressed about your health like I do a lot and feel like you can't do much, remember this: Make good with your ability. I'll be here to help add the frills. ;)



Sorel Estrada Volpe