Month: July 2017

The MAGIC Convention and all its wonder/knowledge

The MAGIC Convention and all its wonder/knowledge

When you think of a convention you tend to think of a boring try and sell me stuff type of event.  Like the kind you attended in high school where they tried to sell you on different types of schools and colleges.  Not this one.  The Magic foundation supports a network of families a persons suffering from a group of rare diseases including the one I suffer from, Hypophosphatasia.  I was nervous to attend my first event, I wasn’t sure what to expect and I was worried it would be dull and clinical the way so much of medicine tends to be.  

However, I was pleasantly surprised by all the things this convention had to offer.  To begin with they offered scholarships for everything from hotel and travel costs to event fees and dinner.  This is wonderful since it provides an opportunity for people with lower incomes to attend this event and network with others suffering the same disease as them.  Because of this generosity I was able to attend myself on scholarship and it greatly reduced my stress level when it came to preparing for this since I didn’t have to worry about how to come up with the extra money.  The next great opportunity they provided was a chance to speak with one of the leading experts of HPP Dr. Kathryn Dahir from Vanderbilt Center for Bone Biology.  If you signed up you were able to sit and speak with this expert and her nurse assistant.  I found this to be a rare opportunity since I do not live near any experts so I was able to ask a few questions and speak with this professional on my particular disease state, something I wouldn’t have had an opportunity to do normally.  The next opportunity was a free dental screening by a well versed dentist on rare diseases and how they affect the teeth.  I was very grateful for this since my own dentist, despite being very good, was unable to explain to me why I could not have the procedures done I wanted.    

Like all conventions there was a trade room that had booths with different companies promoting their products.  Though many of the booths did not pertain to me, and there was no booth for the product I use or my disease, there were still a few booths that I benefited from.  Not to mention some of the swag they were giving away was universally useful, so needless to say I did walk away with a few beneficial products.  

For those who traveled with children there were a number of services offered including a full staff of highly trained child care persons.  They had field trips and parties and other various activities planned for the children which allowed the parents to attend the talks and lectures pertaining to their or their child’s ailments.  If I had been there and a child I imagine it would have been very fun since some of the activities included field trips to amusement parks, scavenger hunts, dress up parties, along with a variety of games, give aways, and crafts.   

The convention had several conference rooms for each of the diseases sponsored with refreshments and breaks after each session.  The organization brought in specialist to speak on everything from dental issues, medical issues, dietary concerns, and durable medical equipment and exercise.  Most of the lectures were well put and well rounded made to address those suffering from all ages.  Some were a bit hasty and not as good as others but over all the information was beneficial and I was able to make contact with some great specialists who can help provide my medical and dental professionals as home with more current and relevant information.  

There were mix and mingle parties for both the men and the ladies, to allow different people from different disease groups get to know each other as well as allowing time for networking within ones own disease group.  This is one of the things I most benefited from since when you live with a rare disease it can become very isolating when you never make physical contact with others in similar situations.  There is always a digital presence and community, but that only goes so far to console someone suffering otherwise alone.  

To top off all the great things this convention provided the organization also offered dinner for two of the three nights we stayed there.  This is the only area I can honestly say was lacking.  The food was geared solely towards children and there was no consideration for persons with any type of dietary restrictions.  There were multiple buffet lines and I feel it would have been much nicer if at least one of those had offered more adult and nutrition conscious options.  Despite this downfall the whole thing was a success and a lot of fun.  

I was lucky enough to meet many of the people at this convention and really enjoyed taking pictures as many of disease sponsored primarily affect children, so there were a lot of cute little faces to capture on camera.  The follow are some of the images I took.

Dark side of rare

Dark side of rare

Sometimes I’m not sure where to start.  So many thoughts run through my brain, like endless waves crashing against an ever shrinking wall.  I wonder sometimes why me?  How did I get so “lucky” to be so “special”, and if I really am then how?  I’ve been told that God does not give us anything we are incapable of handling, but it doesn’t always feel that way.  Like when I lay awake in the small hours of the morning with nothing to calm the crashing waves.  Sometimes I think my mind is worse than my disease.   I have been diagnosed with an “ultra-rare” disease.  Shit like that doesn’t happen.  Bad breakups, heartache, failure, success, those are the things that happen.  I break my arm, or get dumped, I even crash my car.  All these are so small and insignificant when someone tells you that you suffer from a disease that most professionals can only claim to have heard of maybe once in their medical education.  I curse modern technology and medical advancements sometimes because without them I would just have kept living my small endless circle of feeling like there was something wrong, being depressed, breaking down, then getting over it.  But nope, not anymore, now I know I have Hypophosphatasia.  To be honest, among a million others thoughts, I worry about the way my disease effects those around me.  What does my husband feel, how are my parents doing, do my friends and family take me seriously when I try to explain?  I can’t read minds, but sometimes I wish I could because then I would know for sure.  What do you do when the person you love is suffering?  If I’m honest with myself, and the roles were reversed, and my husband or mother or father told me they had this……I’d be devastated.  I’m not sure I would ever be able to treat them or look or think about them in the same way.  But somehow I expect for those around me to both act like nothing has changed, but also empathize with me.  Kind of a have your cake and eat it to type of thing.   I had goals once, and dreams, I was going to be someone and do great things.  Somehow that feels so hard now, and yeah I’m 28 years old with my whole life ahead of me.  But sometimes I want to skip to the end, like reading a book, and see what happens.  A part of me needs to know if things might have been different.  And what would have happened if I had known in my “younger” years that I had this, or if I had never had it at all.  Would school have been more tolerable, would people have been nicer to me.  I’m not sure if that would have been a good thing since sometimes kindness from pity is worse then cruelty.  There is a certain kind of loneliness that comes with being “rare”, and an even worse one when you look “normal”.  

When you have a rare progressive disease no one seems to think of the other effects besides how it affects your body.  You don’t think about how it affects the family, your future, the chance for children, travel, even whether or not you can work in the field of your choice.  No one wants to feel like the greek Atlas holding the world on your shoulders, but the reality is that is what we deal with.  Being rare is not limited to the effects of the disease on the individual, it expands to effect every part of that persons life and extended life.

So I encourage you if you know someone with a rare disease, especially if that disease is invisible to take a few minutes and consider that that person is not only carrying the burden of their own disease, but how their disease affects all the people around them.

Minneapolis Pride and HPP: Invisible Acceptance

Minneapolis Pride and HPP: Invisible Acceptance

I recently had the chance to visit an event known to many as the main celebration for the LGBTQ+ community, Pride.  The vacation was all planned, two whole days of concerts, clubs, shows, festivals and more.  For those with HPP this can be exhausting and painful just to think about.  And for the most part they would be right.  Take a second and think about the difficulties a 28 year old with an invisible illness goes through when trying to keep up with other youngsters their own age during a massive summer event.  Starting with the parking.  If you have ever gone to a festival or major concert of any kind you know that parking can be a real bitch.  You can expect to pay a ton and walk two plus miles to get from your car to the actual outskirts of the event.  Many places, though having handicap parking, are still wholly inadequate for those with more severe and obvious disabilities.  Given that I was going through a particular rough spell with pain in my SI joint I really was hoping for something semi close and easy to walk through so I could use all my energy to enjoy the festivities.  Having been to other events I was worried after we had circled several times only to find nothing available and people flocking from miles around.  So taking the chance I wouldn’t be looked at as the typical “faker” of a disabled tag I am used to I pulled over and asked a police officer if there was any designated handicap parking.  He very polity and with a smile replied that there was a whole street blocked off for that purpose and then explained how to get there. This was my first bit of excitement, designated parking nearby, so there was a shot!  After finding the street I pleased to find a spot open immediately, near a sidewalk, and near the festival restrooms, which also btw’s had a handicap port a potty.  Normally when I put up my placard I get a sense of worry, like people are judging me and that this might be the time I come back to a nasty sign on my windshield.  But something was different this time, no looked twice and I felt immediately at home and comfortable.  

After parking we began the adventure of Pride festival.  Being that anything can happen I tend to look around first thing and try to identify staff, emergency personnel, and first aid tents.  Again I was pleased to pick out staff easily as well as officers on bikes, on foot, and golf cart, riding and walking around ensuring everyone could thoroughly enjoy their time.  This always makes me feel better for the “just in case” scenario where I fall wrong or get run into and something terrible happens requiring immediate medical attention. 

To my great joy and surprise, I was able to keep up with my friends for the whole day as we walked around.  Normally I have a limited amount of time determined by how much and when I take pain and pre meds to prepare for an eventful day.  However being that I was post Lidocaine infusion I was doing particularly well and thought I would try going without. For the most part I did great.  I never had to be the one to stop and take a break, or sit down and rest, and we didn’t have to leave early for me because of my pain.  Last summer this never would have happened, and because of my disease I never would have noticed what a great event to go to if you have a disability or need a little more security when going to festivals.  I had a blast and people were friendly and accepting wherever we went.  There were hundreds of booths and rows dedicated entirely to single subjects.  

There was everything from pet adoption, to different religions, adoption and fostering, medical care, dental care, insurance, education, the list goes on and on.  The culture was extremely diverse and truly a pleasure to have the chance to experience.  Those working the booths were always more then happy to share their product/service or simply point someone in the right direction.  Not to mention the free swag they were giving away was a major plus in some cases.  

As we wandered around what quickly began to resemble a wonderland fit for Alice I noticed the number of service dogs and ESA’s around, as well as extra seating and places to rest.  I always love to take my service dog with me when I go places as he can carry things for me if I am having a bad day, or I just need the support and a friend to help tell me when I pushing myself to hard.  But sometimes it makes me very uncomfortable in public as my dog doesn’t look much like a service dog, and to be honest I don’t look disabled. But here I felt things would have been different.  The air itself was tangible with acceptance, regardless of whatever, or whomever may be accompanying you.  

The next thing I found surprising but also awesome was the food selection.  As many people with rare diseases know there are almost always some sort of dietary guidelines or restrictions that go along with the disease.  This can mean finding food when you go out can be difficult unless you wanna have a “cheat day” and pay for it later.  But at the Pride festival there were several choices that allowed for many different diets from vegan, vegetarian, paleo and more.  I was happy to not have to think to hard about what I was ordering.  There were also plenty of places to get a drink and dispose of the garbage afterwords, but there were also no restrictions on bringing stuff in.  Given that alcohol was the one exception since the festival did provide the traditional beer tent, you were allowed to bring bottles of water or Gatorade to stay hydrated on the semi warm day. 

Later that night I was able to attend a small show put on at LUSH , a traditionally gay bar playing host to some very entertaining acts.  While enjoying the atmosphere and people watching I was able to meet some to the Drag Queens whom were there to perform.  For me this is always fun and exciting as I consider Drag Queens to be literally walking pieces of art, and have followed RuPaul’s Drag Race since the beginning.  They were amazing and wonderful people.  Never have I felt so normal and comfortable with people as I did when talking to the queens of LUSH.  In particular I had the pleasure to meet the lovely and talented Shangela Laquifa Wadley.  She approached me with warmth and smile despite how tired she must have been.  She spoke softly and made me wish I had more of a chance to sit and talk than just a quick fan to fame moment.  But despite this I was able to get a few good photos together and give her my business card directing her to my website here!  As silly as this sounds that small gesture made me feel so good.  I had just had the opportunity to pass on some knowledge, and possibly educate someone with power about one of the zebra diseases.  Giving her my card was a huge leap of faith and to be honest at 2:30am I wouldn’t blame her if she lost it or never bothered to look.  The point was she was kind and took the card, and I had the chance to spread the word about HPP to someone who matters. 

The last step in my journey through Pride was to attend the cant miss event, the parade.  For miles the street was lined with all manner of people in all manner of dress.  We had been running a little late so naturally I was concerned I might have missed the best parts but whether it was fortunate or not a “Black Lives Matter” protest in the middle of the parade street had delayed the start of the the parade by nearly an hour.  I was somewhat baffled as to why the protesters choose that place and that time to express themselves since it was interfering in an event meant to promote acceptance and equality for all.  Despite this my friends and I were able to locate a decent position where I could comfortably stand or sit and watch or take photos of the parade.  It was such a great time to see so many people openly expressing their true inner selves.  I loved being able to capture the souls of some of the parade walkers who truly shown.  It is not often that people allow us to see that intimate part of themselves that at our core defines us.  To capture in on camera was a challenge and pleasure.  

I definitely plan to attend this event in the future and I hope you all enjoy the article and the photos.  Some have been edited some are just as they were taken.