Author: purplelv93

Happy Freakin’ New Year

Dear 2017,

I’m glad you’re gone. I’m glad you are now past tense. I’ve never been so happy to see the back end of a year. You were a bully. You were cruel. You seemed to take pleasure in finding new ways to torture me. But I survived because the people in my life stood next to me and picked me up every time you knocked me down. It is now 2018 and I hope 2018 kicks your butt! 

Thanks for the worst year ever. Screw you 2017.

Sincerely,

Not your fan

Saying good-bye is never easy. Except to a year that sucked beyond belief. Beyond my worst nightmares. Actually 2017 was my worst nightmares come to life. As we enter 2018, I have hope that it will be a better year, but the wounds and baggage from 2017 will continue to plague my existence and there is not much I can do about that.  

Let’s go back to the beginning. 2017 started like any other year. My dad and I went on a Disney cruise for my birthday. Then something new and exciting happened, something I had been hoping to happen for years – my Aunt J and Uncle G joined us on a week long Celebrity cruise. We had a wonderful and relaxing time. It was really nice just being with my family. Before 2017 our family had suffered a few setbacks and scares, so this cruise seemed to come on the tail end of a series of mishaps which included a couple of broken bones that required surgery (both my uncle and I), a very serious cancer scare, a very bad reaction to a pain relieving surgery, and a serious fall down a flight of stairs in a foreign country. As the the four of us enjoyed our week long adventure of sea, sun, fun, food, and togetherness the forces of evil and torture were circling around us. 

Back in November of 2016, my mother had gone in for emergency umbilical hernia surgery. She’d had this surgery before and recovered as expected. However this time, she struggled with her strength and mobility to the point I had her tested for Pompe Disease – just in case. She did not have Pompe. She was in and out of in-patient rehabilitation until they finally allowed her to go home against medical advice. She refused to get the care she needed, which was putting her in a long term care home – even if only for a month. What I found out later was that she wasn’t doing the physical therapy work she was assigned. Two of my aunts and I spent hours and hours on the phone trying to keep senior protective services from taking her away because that is not what she wanted. It was a giant mess and I was stressed more than I had ever been. I went on anti-anxiety meds for the first time in my life. Trying to get my mom the help she needed in her home went on for months, I spent hours and hours on the phone and internet as did my two aunts. I spoke to all of her health care professionals and social workers and neighbors. I was in Florida, she was in Nevada, and my aunts were in Colorado and Georgia. I was on the phone or internet for hours every day for weeks trying to get her the help she needed. I paid for a nurse to come help her, I paid for food, and groceries to be delivered to her since she couldn’t get out of the house. My aunt and I made plans to go to Las Vegas at the end of March to try and get her better situated in person. We didn’t end up going to Las Vegas until May. 

My dad and I had a our usual assortment of travel adventures coming up. We booked a trip to Asia for April 2017 to visit Shanghai Disneyland. From there we would fly to Tokyo and spend some time there before setting sail on a cruise from Tokyo to Vancouver. About 4 weeks before we were scheduled depart, my world changed forever – my father suffered a heart attack and passed away. I’ve lost people and experienced grief before, but this hit me harder than anything every has. I couldn’t eat or sleep, and I was physically ill. It was probably a good thing that I was already on anti-anxiety meds because without them I am sure I would have been even worse. 

Thankfully I have some really amazing friends in Florida who were there by my side immediately and my Aunt J and Uncle G arrived the next day – they had just returned to Colorado from our cruise on March 1 and now they were back. I’m an only child so I had no siblings to share this burden, but again, thankfully my friends and family were there.  I will be forever grateful to Susan, Jeanne, Jagger, Cristy, Anne, and Angelica for making sure I was never alone and didn’t have to leave my room until I was ready. I am grateful that Allen was able to pick my aunt and uncle up from the airport so I am grateful to may aunt and uncle’s neighbor who drove them to the Denver airport in the middle of the night so they could be with me the very next day. I didn’t have leave the comfort and safety that was my room. I wasn’t ready to explore the rest of the apartment my father and I had shared. It was a couple of weeks before I could even go into his room, we kept the door shut when people had to go in there because it was just too painful for me to see his room without him in it. 

My cousins and Aunt K and Uncle H flew in as well from Colorado, Kentucky, and California. Somehow thanks to a LOT of support I got through planning and executing my dad’s services and I think he would have been happy with the choices we made. We had a simple military ceremony at the National Cemetery in Cape Canaveral – very fitting seeing as we cruised out of Port Canaveral numerous times over the years and it was one of his happy places. The next day we had a “Celebration of Life” at our clubhouse. I know how cheesy that can sound, but it really wasn’t. My friend Leanna, whom my father thought of as a niece, created  a beautiful slide show of photos of my dad and set it to music from Main Street USA where he had worked since 2007.*  We prepared some his favorite foods to serve at the Celebration including explanations of what they were and quotes from dad about the items. Such as: Mashed Potatoes – “I’m Irish and I’ve never met a potato I didn’t like.” – Bill Griffin. Loads of people he worked with at Disney came by and shared stories of his antics, my family really enjoyed hearing about his life as part of the Main Street Mafia – if you have to ask, then you don’t need to know. Wink. Wink. I asked people to sign a guest book and share a story about my dad. People has some great things to say about him. I will treasure that book.

After the services were over and the out-of-towners headed back home, it was just my Aunt J and I. She stayed behind to help me figure out what to do next. She ended up staying with me in Florida for almost 6 months.

I needed to make a decision on what to do, as in where to live and who to live with. I had a number of offers, which is always nice. As much as I would have loved to stay in Florida, it made the most sense for me to move to Colorado with my Aunt J and Uncle G. They are both retired and are around to help me with the things Pompe prevents me from doing on my own. Plus, it is not just my aunt and uncle here. It’s my cousin and her husband who live in the same neighborhood, two of her kids, my other cousin, my cousin’s husband has a sister, daughter, and grandson in the area as well. Our family gatherings can be up to 11 people. Family game night is a thing! An awesome thing! And most of them are now hooked on escape games too! I miss my amazing friends in Florida. I miss the weather soooooooo much. I miss the beach, theme parks, cheap cruises and all that, but I am so blessed to be surrounded by family. I have good medical care here and didn’t miss an infusion with the move thanks to my nursing company and my Case Managers at Genzyme. As hard as it was to leave Florida, the transition into my new life here in Colorado has been pretty good. 

Once the decision was made that I would move to Colorado, the packing and planning needed to begin. I had my things as well as my father’s things to sort through. The first order of business was to deal with dad’s bank account. So my aunt and I went over to his bank and handed them the death certificate, but my father had not named a beneficiary on his account. They gave me instructions on what I needed to file with the probate court. My aunt and I went to the court and filed the paperwork and I paid the over $300 filing fee. We followed the clerk’s instructions on what to include and what not to include. A week letter a rejection letter from the court arrived. My parents who had been separated for over 23 years were still in fact legally married and therefore my mother was automatically the beneficiary. My mother was in Nevada and didn’t know my father had passed away – it was his wish that she didn’t know. Plus she was dealing with her own medical issues. I did have power of attorney papers for her which did allow me to have my father’s body released from the medical examiner to the funeral home. But those papers did nothing in the eyes of the probate court. Then just 7 weeks after my father passed away, my mom passed away. She went downhill so quickly that even her nurses and doctors were shocked. No one can tell me what she died of. No one. I had them send me her medical records and I’ve had a couple of my nurses look through them and no one seems to know. 

Everything in Florida came to a screeching halt when I got word that my mom had passed. My Aunt J and I had to get to Las Vegas immediately. We had to make arrangements and clear out her apartment. That was a nightmare of different color. Stating that she was a pack rat is putting it nicely. She was a hoarder, not like the hoarders you see on tv who live with piles of trash. She just had multiples of everything and everything was stuffed into every nook and cranny in that place. We counted over 100 pairs of shoes, 14 Christmas tea pots, 6 leather coats, and so on and so on. To walk into her place you wouldn’t know she was a hoarder, everything was put away and she had decorated her place nicely. Remember folks, hoarding isn’t just about trash it is about buying and buying in excess. It is not always about living in cramped conditions, it is an addiction to buying “stuff” and not letting go of it. Also, from time to time you should raid your pantry and throw out expired food. My cousin and his wife stayed at my mom’s place the weekend of the clean out – the rest of us were at a hotel on The Strip (Thanks to a generous discount from one of my sorority sisters). My cousin called one morning before we got to the apartment and asked if he could get rid of any expired food and then donate the rest. Sure! Great idea! When we arrived at the apartment he had a fun new game for all of us: Guess how long ago the oldest product expired? The answer: 22 years ago! Clean out your pantry and fridge at least once a year, or even every Leap Year for crying out loud! 

When I got news that my mother had passed away less than two months after my father’s death, I took my struggle to Facebook. I didn’t know where else to turn. I needed more help than my closest circle of friends and family could provide. Friends from all over the world stepped up and helped me. They gave me help I didn’t even know I needed. I asked for help with packing both in Nevada and Florida, but my friends did way more than that. A friend from elementary school asked for people to help me financially – I didn’t even think I needed that kind of help. Boy was I wrong! Thank you Heather for having the foresight to know I’d need that kind of help. Death is freaking expensive. Taking a last minute trip from Florida to Nevada is expensive! Plane tickets, hotel, food, cab fare, everything! People offered frequent flyer miles, buddy passes, hotel discounts, help with packing and packing supplies, flowers and cards arrived, meals were purchased, well wishes and prayers were sent. My friends Candi and Rob sent me a wonderful book on how to cope with loss. Everything everyone did, no matter how big or how small helped and was greatly appreciated. I am not sure I would have survived this year if it wasn’t for the support I received from everyone. In the end I sent out over 100 thank you cards to people who came to my rescue in my darkest hour of need. 

When my Aunt J and I arrived in Las Vegas, we were greeted by Aunt K and Uncle H from California and my high school/theater buddy Carie also made the journey from California to Las Vegas. My aunt and I arrived pretty late and so we had to wait until the next day to head over to my mom’s apartment to clear out her belongings. I had spoken to someone in the office a few days earlier as well one of my mom’s case managers from Hospice and gave them our travel plans. They both told me to take as much time as we needed to clear everything out and not to worry about the rent that was now overdue. We met with the apartment complex manager who proceeded to tell us that we would need to be let in and out of my mom’s place by a staff member and could only be there during business hours. Oh, and that we only had 2 days to clear everything out. This is just the tip of the iceberg of our dealings with the apartment manager, I have it all documented and may post it separately because I don’t have the strength to go through it all again. Basically she was drunk with power and cold hearted and wrong. We got her overruled and over 10 days of 12 – 15 hours a day and with the help of over 30 people we got the apartment cleared out. And the apartment manager got what she deserved – fired. Not that I would want to interfere with anyone’s ability to earn an income, but this manager was in the wrong line of work and I think she may have even broken the law. The apartment community staff and residents are much better off without her at the wheel. 

My cousin Lani Kai and Aunt LaVonne from California also came to my rescue in Las Vegas. As I mentioned, my mom had a LOT of stuff. Everything from antiques both authentic and reproductions, a mink coat, valuable art work, loads and loads of silver and gold and fine china. A lot of this stuff I had never seen before. And we are pretty sure the China Hutch had some sort of magical Tardis-like power because it kept producing more and more stuff. No matter how many items we pulled out of it, there always seemed to be more. It took hours to unload it. 

We discovered that Las Vegas isn’t really the market for vintage anything. Well, what can you expect from a city that tears down buildings every other day and builds bigger and better ones? My Uncle H spent days dealing with consignment shops and dealers in the area and no one wanted anything in that apartment. Well, ok one lady offered about $200 for some furniture and tea cups. Aunt LaVonne knows a woman with a consignment shop in California who was happy to take on a LARGE U-Haul truck crammed with stuff. Everything from furniture to tea cups to porcelain figurines. That cleared out the majority of “stuff” but it took a team of about 10 of us all day to get the truck loaded – but it was worth it. That truck pulling away was a huge weight lifted. I had no idea what I was going to do with all the “stuff” until Lani Kai and LaVonne arrived. 

After the worst trip to Las Vegas ever, my aunt and I headed back to Florida. We were mentally and physically exhausted as my infusion nurse pointed out. He put us both under strict orders not to do anymore work of any kind for a week. Otherwise he feared I would end up in the hospital. I had a speaking engagement in Louisiana that week, so while it was technically a business trip it was also a very nice and much needed get away for my aunt and I. We returned from that trip much more refreshed than we had from the Las Vegas trip.

All this time I was still going back and forth with probate court over my father’s estate. They kept telling us it is a simple case and should only take another week or two. We heard this over and over again. Each time I submitted more paperwork they had new problems with it. It was like they were making up new excuses not to process things and they were very inconsistent. We kept putting off the move to Colorado because we were under the misguided delusion that this court thing would be wrapped up quickly. Additionally, I was still responsible for the lease on my apartment that wasn’t up until November. Finally we just decided to suck it up and start the move to Colorado and deal with whatever may come our way with probate court and the breaking of my lease. Probate is still pending and I have no idea what to do next other than having to hire lawyers in both Nevada and Florida – which is really not in the budget. Getting out of my lease was much easier than I expected and the staff and management couldn’t have been more helpful. The exact opposite of how the manager at my mom’s place treated me. 

So my Uncle G flew back to Florida from Colorado to help my Aunt J and I with the drive. And also, he hadn’t seen his wife for the better part of 6 months and wanted to make sure she still knew what he looked like. He along with my cousin and her husband did drive from Colorado to Las Vegas when we were there, but that was a quick and chaotic trip for all of us. Finally, they were reunited for good and we made the trek home. We had all these plans to stop at 3 Presidential libraries on the way home. However, once we got on the road, we all just wanted to get home as quickly as possible. This move had been drawn out for so long that is was time to just get to Colorado and put that last chapter behind us. 

The journey from Florida to Colorado was not without its misadventures. A semi made a left hand turn right in front of us on the highway causing us and everyone else around us to slam on our breaks. The next day a couch fell off a pick up truck on the highway sending us and all the cars swerving to miss the debris and struggling to see through the snowstorm of cotton stuffing that exploded everywhere. After several long days on the road we finally arrived home. We pulled into the driveway and my aunt and uncle went to unload my scooter from the back of my car. There was a problem. My scooter was not there! It had fallen off the lift somewhere between the Kansas/Colorado state line (our last pit stop) and home. So the hits just keep right on coming! Of course, this was a Sunday of a holiday weekend so there were no mobility stores open. We made some phone calls and ended up at Wal-Mart to purchase a manual wheelchair. The two days I had to spend in that chair were exhausting and uncomfortable. On Tuesday when the mobility shop opened up I bought a new scooter – out of pocket. Why? Because I didn’t have pre-authorization from the insurance company and that takes months. I still don’t know if I will get my insurance to cover the cost of it. 

I have still not settled the estates for either of my parents. That is whole mess of crap. No wills, no beneficiaries named, probate court in two different states – neither of which I currently live in. Folks – write a will, name beneficiaries, open a trust. Probate is not fun nor is it cheap. Do not put your family through this crap. Please! 

My cousin Val volunteered to help me make final arrangements for my mom in California. The plan is to place her remains in a family plot where her parents and brother are buried. You’d think it would be simple enough right? Nope. Val and my Aunt J called the cemetery to ask about pricing and what needed to be done to make this happen. We’ve gotten several different answers. A family friend who lives near the cemetery even visited and tried to get to the bottom of things. We keep getting different answers and different hoops to jump through. I need permission from my mom’s brother to use the plot for her. We’ve been told there is a form he needs to sign, but no one can seem to produce this form. We’ve also been told there is no form. We’ve been told that they can’t start the paperwork until we schedule services. We’ve been told we can’t schedule services until the paperwork is complete. Anyway, Val was on top of this and you don’t want to mess with her when she is determined to get something done – then in October, the unthinkable happened. Her father, my Uncle H (the one who came to Florida and Nevada with my Aunt K when my parents passed) took a nasty fall, hit his head, and suffered a heart attack. Val did CPR on him and EMTs got his heart started again in the ambulance. He was unresponsive for days, but did have brain activity so we had hope. It was very touch and go and he had a set back his first night out of ICU. The nurse didn’t listen to Val’s instructions about putting his I-Pap on him before he went to sleep. So he stopped breathing during the night and back to ICU he went. His sister, a retired nurse was soon on hand to help make sure nothing like that would happen again. Val was prepared to sleep in the hallway or lobby to make sure her father was getting the care he needed. Well, their persistence paid off and he is scheduled to go home on January 4th.

I also had surgery in November. Remember the broken leg I mentioned earlier? About 3 years ago I broke my femur and had rods and screws placed in my leg. The bone healed nicely and I did all my physical therapy, but 3 years later I was still in pain. My new doctor here in Colorado suggested that I be seen by an orthopedic specialist and I agreed. The surgeon suggested that I have the hardware removed and that could get rid of the pain since I had an inch of metal sticking out of my bone in two spots. Also, I had a tendon that ran over those two sharp pieces of metal every time I stood up and tried to walk. So I agreed to surgery and it went pretty well. Because of my Pompe Disease, I opted for light sedation and an epidural. That’s right, I was awake during the surgery, but it was the best thing for my respiratory system. It was weird and a little scary, but I know I made the right decision not to be put under. As well as the surgery went, the recovery was a lot tougher than the initial surgery. I was in a lot of pain and discomfort for the first couple of weeks and was not allowed to put any weight on it. I have been house bound for about 5 weeks now. The pain is almost completely gone and I start physical therapy on Wednesday. Hopefully that will give me some independence back or at the very least, mean that I won’t experience the pain I had before the hardware was removed. 

2017 continued to take aim at my family. There was a semi-emergency gall bladder surgery, a job loss, two beloved family pets had to be put down, a gas leak that could have been deadly, and a mining company wants to put a gravel pit in behind our house. 

Dear 2018,

I am still recovering from an abusive relationship with 2017. Please be gentle, patient, and kind. I would love for some great things to happen in 2018, but I am more than happy to settle for no more tragedies. My family and I really need a break. 

Hoping for a better year.

Sincerely, 

Your hopeful fan

*Click here to view the slideshow Leanna created for my dad’s Celebration of Life Gathering:  Bill1 2

Accessible Escaping

Escape Room SWAG

Escape Room SWAG

 

What? Accessible Escaping? What does that mean?

This is a bit like my reviews of accessible travel, but here I will review the accessibly of escape rooms.

“What? Now I’m even more confused?” you say. “What the heck is an escape room and what does it have to do with living with a disability?” you ask.

Ok, first let me try to explain what an escape game is for those of you who have been living under a rock for the last few years. Escape room games have been prevalent on the internet for several years. They are mostly point and click games where you have to decipher clues and riddles to gain your freedom. Virtually, of course.

Real life escape games appeared on the scene 2007 (or so rumor, meaning the internet, has it) and since then have taken the world by storm. They are opening up all over the world and are evolving quickly as the market becomes more and more competitive. It’s a real life adventure where you find yourself locked in a room with friends, family, strangers, or coworkers. Most escape room locations will offer several game scenarios to choose from. Most very well themed and differ in levels of difficulty. You must work together while racing against the clock to solve several puzzles and escape the room. Sometimes there are other objectives, like finding a cure for a pandemic, or finding a kill code for a nuclear attack and you’re never really locked in. At least here in America you’re never really locked in, I think fire codes might have something to do with that. Some rooms have “panic buttons” that will override the lock and allow you to exit should you need to. Other doors aren’t really locked and finding that final code or key to unlock the door really only serves to stop the clock.

It is an activity that, for the most part a disabled person should be able to fully enjoy – with a little help from your co-escapees. Which, is part of the fun as you really need to work together able-bodied or not. According to my friend Leanna’s spreadsheet (yes, she did that) we have participated in more than a dozen escape rooms in the Orlando area.

What I have discovered is that escape room websites almost always fail to properly communicate whether or not their experiences are accessible or not. I have always had to call or email for clarification. Most of the time the employees are very helpful and respond within a reasonable amount of time. I just don’t understand why they can’t include this information on their website – in the FAQ section for example.  As anyone who is mobility challenged can tell you, the definition of accessibility can vary from place to place and person to person, but is it too much to ask for a little information to be placed on these websites?

I’ve found some places to be 100% accessible, the building, the lobby, the restrooms, the entire escape room. There may be some elements of the game that are difficult if not impossible for someone in a wheelchair to complete, but that is where your able bodied co-escapees come into play. I would say if an escape room game is 90% wheelchair accessible, I would go for it.

Playing escape games from a wheelchair does offer a unique advantage to you and your teammates. My sightline is at a lower level. I have spotted clues much faster than my standing pals would have. So any disadvantage my chair might have is counterbalanced with this unique and often time saving perspective.

One place said all their rooms were accessible, but to get to their location you had to be able to climb a flight of stairs because there was no elevator. So, um no, The Great Escape Room that does not make your location accessible if a wheelchair user cannot access your business – levitation having yet to be mastered.

America’s Escape Game also offers mostly accessible rooms and when I called to inquire they were extremely helpful. They spoke with their game designers and recommended what they felt was their most accessible game (The Lost Tomb of Monthu) and it was roomy enough. The problem however, with this company is that their gameplay is not necessarily a private experience. Meaning that unless you have a enough players to fill all the spots or are willing to buy up all the spots you run the risk of being placed in the room with strangers and they really try to pack those rooms. While making new friends and bonding over puzzles can be fun, being locked in a room with up to 12 people who are not used to moving out of your way can be frustrating. When my friends and I played we had a team of 6 in a room that will hold up to 10 players and it was not bad, nor was it as roomy as some of the other rooms we’ve played. I can’t imagine being in there with 9 other people.

The Escape Game Orlando has some games that are accessible and some that are not. This company also offers what is called “shared experiences” which means you may end up playing with strangers, but unlike America’s Escape Game, their room capacity is smaller (7 – 8 players) so you won’t have to maneuver around (run over, whatever) as many people. We’ve played the two games at this location and had no issues with my mobility scooter. That being said, there were only four of us in the room each time. Had we been playing with a larger group I don’t think it would have been as enjoyable. The two rooms we played, Classified and The Heist, were amazing and offered enough space for our team of 4 play comfortably. We chose a time slots that we hoped would increase our chances of playing alone and it paid off. We booked times in the morning and in between two other start times of the same the game.

MindQuest Live’s location is also accessible as are their escape rooms – mostly. One room requires you to go up an over a 1 inch threshold. That required my teammates to lift me and my chair over the obstacle – but MindQuest Live was very upfront about it and even offered to switch us to a different game if we didn’t think we could do it. MindQuest offers both shared and private experiences. So you can choose to play with just people you know or join up with others. The only game I have not played is Cyber Crash, so I cannot give a first hand account on the accessibility of that room, but all the others were just fine.

Escapology is one of our favorite locations, it was the first location we tried and therefore it is where the addiction began. They can’t add new games fast enough for us. Pretty much everything about this location and their games are accessible. There are some tight corners in some of their rooms that might be challenging for larger chairs, but they are still very accessible as a whole. Their newest room, The Lost City, is pretty snug due to the immersive theming. It is recommended for 2 – 6 players, but with a wheelchair or scooter I wouldn’t recommend trying to play with the maximum amount of players.

Escape Goat offers three different rooms, all of which are fully accessible. There is one room that may pose a challenge to those in wider chairs. If you are in a wheelchair and are planning on trying the Area 51 room, just call for clarification/measurements. Depending on the size of your chair Area 51 will either be 100% accessible or 95% accessible with an easy work around so you don’t miss any of the action. This a lovely family run business and when I visited they told me their goal is to make their experience enjoyable and doable for everyone. They even stayed open later one evening so my friends and I could play a second room.

Escape rooms are a great attraction for wheelchair users, when the business is truly accessible. Unless their website is very, very specific (Escape Goat’s comes the closest), always call or email for specifics before booking a spot as pretty much every escape room requires you to pay in advance.

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Down for the Count

It’s been over a year since I conducted a most epic gravity check. Just over a year ago I fell and broke my leg. I have still not fully recovered. After the surgeon put me back together again, he warned me it would take a least a year to completely heal. I didn’t believe him. I have trust issues with doctors (and television executives – but that is another story. Hint: Firefly). The doctor was right. Here it is, over a year later and I am still not back to the condition I was before my accident. 

So what about this epic gravity check you ask? It was late at night, I was tired from being a little late on my infusion, and I fell backwards off a step stool into a confined space and landed on my hip. In the world of Pompe, falling is not uncommon, minor bumps and bruises, minor (and major) humiliation, and sometimes serious injuries happen in our little awkward community. My previous falls had resulted in a concussion, mild whiplash, and a twisted knee. Those were nothing compared to this fall. I had no idea what I was in for as I sat there on the floor waiting for the aching to subside. I thought I could simply scoot my way to a nearby chair and get up. Nope. I struggled for hours and couldn’t move more than inch without excruciating pain. I had no choice but to call for the paramedics. Even then I thought maybe they could just help me up off the floor and into my bed. I wasn’t in pain, unless I tried to move. When the paramedics got there and examined me, they thought I might have just dislocated my leg. They felt that I would be in much more pain if something had broken. Ok, I thought. They’ll just put my leg back, it will be painful, and I’ll recover in a few weeks. I had dislocated my knee in dance years ago and it healed fairly quickly. My dad is the master of dislocating his shoulders and he always heals up fine. No problem, I can handle this I thought. 

When the paramedics moved me from the floor to their gurney I experienced the worst pain I had ever felt in my life. I would have to endure that same pain of being transferred from place to place over and over again over the course of the night. From the paramedic’s gurney to the ER bed. From the ER bed to the X-ray table – and then they had to move my leg all around to get good images of it. They did give me a mild pain reliever before they sent me to the X-ray lab. After the had me do what felt like yoga on the X-ray table, they transferred me back to the ER bed. And then I waited for them to tell me I had severely dislocated my leg. That was not the verdict. I had in fact broken my femur bone and it would require surgery. Not awesome.

A million thoughts ran through my head:

Like: I don’t have time for this!

I have a ComicCon to attend this weekend. Yes, that was my first concern. The entire cast of Torchwood was going to be there! I am still ticked about this. To add insult to injury, literally, just about all of my doctors attended the event. Making them cool doctors, but cruel people to not have taken me. With a little make up I could have been a zombie apocalypse victim. They could have just rolled me into convention the hall in my hospital bed. HMOs cover that right? 

Worst of all, I had never really had surgery before. For one of my muscle biopsies they put me completely under and I was sick for days afterwards. And now, with my official Pompe diagnosis, I knew how dangerous general anesthesia was to me. 

Luckily, I have one the world’s leading experts in Pompe Disease on speed dial. I got in touch with Dr. Byrne right away and expressed my concerns to my medical team at the hospital. Thankfully my medical team was more than happy to consult with Dr. Byrne about the special precautions they needed to take. Honestly, I couldn’t have asked for better care. They brought a respiratory specialist in to join my team to make sure they were extra careful not to put more stress on my diaphragm than absolutely necessary. 

Their plan was to do the surgery as quickly and as safely as possible. Then to get the tube out of mouth and sit me up as soon as possible. The surgery involved two lovely incisions, to place a rod and some screws into my leg to patch up the break. They stapled me back up and sent me to recovery. I woke up in my hospital room sitting up and without a tube down my throat. Good job docs! Apparently there was a recovery room I was in, but I don’t remember that part nor do I remember acting all goofy while coming off the drugs as a certain father of mine claims to have witnessed. There is no documented or photographic proof of this alleged behavior. I only remember waking up in my hospital room feeling a bit groggy with my leg bandaged up. 

The rods and screws that will reside in my leg forever.

The rods and screws that will reside in my leg forever. Which is why I am still experiencing pain. 

I spent two weeks in the hospital recovering. They brought in a physical therapist to work with me, I was able to stand on my leg the day after surgery. I couldn’t (and still can’t) pull all my weight on it, but I could stand on it. Nice going doc! 

The reason I stayed in the hospital so long was partially due to needing an infusion. The doctor on my case was reluctant send me to inpatient rehab, my next stop, before I had my infusion because they were not equipped to give it to me. Well, neither was the hospital really. They had not been trained on how to mix or administer Lumizyme, but they stepped up to the plate. Once again, my personal care team at Genzyme helped save the day too. They worked with my insurance company and got the staff at the hospital trained so I could receive my infusion. 

Two weeks in the hospital wasn’t too bad. The food was ok , I had a room to myself, free WiFi, a decent amount of TV and movie channels, and I had visitors just about every day. 

After my infusion it was time for me to be moved to an inpatient rehab center. This would allow me to work on recovering enough to be self sufficient. I needed to go from completely reliant on nurses to being able to move myself from place to place on my own. I had a lot of work to do, but the facility provided the perfect motivation in the form of sleep deprivation and inedible food. 

The physical therapists and nurses on this facility were top notch. My care was amazing. However, the living conditions just didn’t work for me. I was basically in a nursing home for lack of a better term. I was the youngest patient by decades. Decades. I shared a room with a patient who had to sleep with a bed alarm because she kept trying to get out of bed and she would fall or try to make a break for it. The alarm went off all night. Night after night after night. The food was almost comical. No, it was bad. I would take photos of it and send it to my friends and ask them guess what it was. A couple of friends would smuggle food in to me when they could. I would have killed for something from Del Taco. Killed. 

Guess the mystery meat - is it even meat?

Guess the mystery meat – is it even meat?

How many times has then been recycled?

How many times has then been recycled?

I think this was chicken, carrots, and some sort of mystery side dish made from 3 days worth of leftovers.

I think this was chicken, carrots, and some sort of mystery side dish made from 3 days worth of leftovers.

I worked hard to get an early release. To reach all my goals as quickly and as safely as possible. In the meantime I was still plotting my escape in case my captors were not prepared to let me go. I had friends at the ready with an unmarked van waiting to snatch me under the cover of nightfall. Luckily it never came to that. It might have led to prison time – where the food might have been better. I was released after one week. The director came to talk to me before she would sign the release papers. She had never had a patient make that quick of a recovery. I wasn’t looking to set any records, I just needed my own bed, and some food that I could identify by sight.  

I made it home and then went for outpatient physical therapy. This helped a lot, but I am still not back to where I was. It is frustrating to say the least. I am glad my surgery and recovery have gone as well as they have, but I am ready to be able to fully walk on my leg again. I am ready to take back the small bit of independence I still don’t have. It is just too painful to walk on that leg to this day. 

Where it really holds me back is with driving. Not with the actual driving, but the loading and unloading of my scooter. Since my leg still causes me so much pain, I cannot walk the length of my car to load and unload my scooter from the lift. Someone has to do that for me. Sometimes it is a friend, sometimes it is a valet. Yes, it has slowed me down. I can’t just get in my car and drive someplace without having someone either with me or people at both ends of my journey to help me. However, it has not slowed me down entirely. With help, I can still enjoy the theme parks and travel and cruising. I am still able to get out there and give presentations about Pompe Disease to the patient and medical community. 

My battle with gravity will never end, but hopefully soon my battle with my new metal infused leg will end and I will emerge victorious! I will Keep Fighting! 

Why do I do this?

I had a patient meeting yesterday in Knoxville, Tennessee. It should have been a a fairly easy journey – famous last words. They loaded about 10 of us on the plane and the Captain makes the following announcement: “Well folks, I don’t have good news. (At least we were still on the ground – geez!). The mechanics have inspected the plane and have found a problem with our right engine. That is all I know, but it was fine all the way here. We have stopped boarding and if you feel like you want to get off the plane you are welcome to do so. I will know more in about 10 minutes, but please expect at least an hour delay.” 

Waiting.

“Folks, it is not looking good. This plane is grounded until at least 3pm.” (Which is about 6 hours after the scheduled departure.) I found out later that the engine had to be totally overhauled and that plane was expected to be grounded for 24-48 hours. Delta did live up to their name “Don’t Ever Leave The Airport.” Seriously, they did a good job in a stressful situation. 

I was supposed to arrive in Knoxville at 1:30pm for a 6pm meeting. Delta tried to reschedule me for a 6pm arrival. When I told them why that didn’t work for me they found room for me on a flight that arrived at 4pm. The meeting was not close to the airport so the driver took me from the airport, to hotel to pick up the folks from Genzyme, and we went directly to the meeting. I changed clothes at the conference center.

The flight home was much less eventful. Except for the guy next to me who kept dropping his phone on my foot. Ouch! And the lady behind me who kept digging around in the seat pocket behind me. Yes, lady, that is my butt. I was already groped by TSA, so I’m all set.

And oh yes, I had to change planes in Atlanta – which I also hate. Not so much changing planes, but changing planes in Atlanta. Ugh! 

All that travel drama turned out to be worth the trouble. There was a patient who was diagnosed in the 60’s with some sort of “glycogen storage disease.” This patient now has a Pompe blood spot test kit and is making an appointment with their doctor. There were other key moments of this meeting, but this was the highlight. I would not wish this disease on anyone, but if it is between Pompe and another cruel disease for which there is no treatment, I think Pompe is the lesser evil. 

I would have been gutted if the plane delays had caused me to miss this meeting. This could change the course of a person’s life. This is why I put up with air travel for one night away from home in 30 degree weather. 

I am now going to curl up in my own bed and sleep until I have to get up for my next presentation. Tomorrow. Gainesville. 

Extreme Makeover: Stateroom Edition

 

Leanna and I in the Bahamas with a classic (Magic) and new (Dream) ship. May 2012.

Leanna and I in the Bahamas with a classic (Magic) and new (Dream) ship. May 2012.

Sailing on the Disney cruise ships in non-accessible rooms used to be a cause of concern for me. Used to. Being the clever person you have come to know and love, I of course figured out a way to make (most) non-accessible staterooms on both the classic and new ships work for me. Of course, a true accessible room is always best, but they are not always available. Disney used to do a really good job of  holding accessible rooms back for passengers who really need them, but now it seems anyone can easily book one. Whether they need one or not. I’ve seen people who claimed to need a walk/roll in shower because they can’t climb in and out of a bathtub, but seem to have no trouble climbing in and out of the hot tubs on the pool deck. I know people request the rooms simply because they are larger, so I had to get creative with non-accessible rooms when none are available.

 

Roll in shower in an accessible cabin. There is a fold down bench, grab bars, a hand held shower head, and best of all nothing to climb over.

Roll in shower in an accessible cabin. There is a fold down bench, grab bars, a hand held shower head, and best of all nothing to climb over.

The Classic Ships: The Magic and The Wonder

I spent two weeks on the Disney Wonder in a non-accessible room, so I figure I can make just about anything work – one way or another. There is always the option of using the facilities in the Fitness Center should I not be able to create an environment suitable to my needs. The Fitness Centers on all the ships have  very nice walk/roll in showers.

 

On the Magic and Wonder, the main bed splits into two twin beds upon request. Brilliant.  This offers more flexibility for anyone, special needs or not. We had our stateroom host remove one of the twin beds and slide the remaining bed against the wall – lengthwise. This gave me plenty of room to bring my mobility scooter in, turn it around, and of course charge it at night. I brought along my own portable grab bar. These can be found in just about any mobility shop. I’ve also seen them in Target. I used the grab bar in the shower, and not only did I use it, but everyone in my travel party used it. We felt it offered more stability than the permanent grab bars. Crossing the Pacific Ocean was a bit bouncy and the grab bar worked great for all of us. Disney Cruise Line provided a raised toilet seat to complete our transformation into an accessible stateroom.

 

The New Ships: The Dream and The Fantasy

The first time I sailed on one of the newer ships was last year on the Fantasy. We  managed to obtain an accessible verandah room. On the classic ships, the accessible verandah rooms are all located at the back of the boat and have a white wall verandah. This doesn’t bother me, but some people prefer the plexi-glass verandah walls so they can see the water without having to stand up and peer over the verandah wall. On the newer ships, accessible verandah rooms are located all over the ship, the front, middle, and back. Our room was located midship and had a plexi-glass verandah. I’ll admit the plexi-glass is nice, but not having is certainly not a deal breaker for me. In my opinion, the biggest advantage the accessible cabins on the new ships are the automatic doors. To enter your cabin you simply tap your card against the RFID reader and your door opens, stays open long enough for a wheelchair user to enter and get out of the way, and then closes. There is a button on the inside of the cabin that you press when you are ready to leave. Non-wheelchair users have complained about the “nuisance” of having to wait for the slow moving to door to completely close before they can leave.

 

This is what I used to create "steps" to use in the non-accessible cabin.

This is what I used to create “steps” to use in the non-accessible cabin.

Recently, I stayed in a non-accessible verandah room on the Dream. There were only two of us in the room, so again, we made it work. Since the beds on the new ships do not split apart it was a bit more challenging than when I was on the Wonder. Our room was a “Family” stateroom, meaning it had a round bathtub instead of a rectangle one. This geometric difference made it possible for me to bring my mobility scooter into the cabin. The round shape of the tub, which was reflected in the wall next to the bed offered just enough room for me to squeeze in. This would not be possible in the rooms without a round tub. Speaking of the round tub, while it offered an advantage regarding bringing my scooter into the room, it simultaneously presented a new challenge. The round tub was higher and much more difficult to climb in and out of than the rectangle tubs. We solved this problem by utilizing my portable grab bar again, and bringing my own “adjustable steps.” Not knowing exactly how high I would need my “steps” to be, I needed something that could be adjusted and wouldn’t become a slipping hazard. I scanned the aisles of the hardware store for something and what I ended up with was floor mats designed for children. They are ABC/123 interlocking floor mats and they worked really well. I ended up stacking 7 of them together and secured them with a luggage strap. They are light and easy to transport, but they can take up a bit of luggage space. Disney provided a raised toilet seat again and the transformation into a semi-accessible cabin was complete. The biggest obstacle in this room was getting out. Since the beds on new ships don’t split apart, I didn’t have enough room to turn my scooter around. I had to CAREFULLY back up – there was little room for error in the narrow hallway leading from the bed to the door (the regular stateroom doorways are 25.5 inches wide). My friend had to open the door and then help me navigate backing out, with practice we got better and faster at exiting the room. I could not leave the room unless my friend was with me, thankfully she was always there to help me. I’m sure in a pinch I could call Guest Services and they would deploy someone, probably my room steward, to open the door and help guide me out.

 

Location, location, location.

Some people believe the best location is mid-ship, the cruise lines fuel these fairy tales by charging more for what they deem more desirable locations. The “theory” they peddle is the midship rooms will experience less movement. I’ve been on different decks and different locations and have not noticed any difference in the rocking. I believe it is merely a ploy to extort more money. For wheelchair users, the best location is going to be near an elevator. The hallways are narrow, filled with housekeeping carts, and other guests going to and from their rooms. Additionally, if your scooter is too large to fit through your stateroom door, you’ll probably need to park it in the elevator lobby. There are electrical outlets in the lobbies, so you can charge your scooter.

 

Accessible rooms are indeed best for me, but if none are available I’m not going to let that keep me from cruising with Mickey and Captain Jack.

 

My friend Lonnie and I on Pirate Night. December 2012 on the Disney Dream. Oh, and that's our friend Donald Duck in the center.

My friend Lonnie and I on Pirate Night. December 2012 on the Disney Dream. Oh, and that’s our friend Donald Duck in the center.

Lumizyme “on the go”

In October I took a 3 week vacation, one my friend Leanna and I dubbed our Epic Disney Vacation. We spent a week in Anaheim, California exploring the Disneyland Resort, and then took a two week Disney cruise to Hawaii. My Lumizyme infusions are scheduled for every two weeks, so obviously some arrangements would need to be made. I become terribly fatigued and my muscles start to ache if I miss a treatment. It is a huge set back in my crusade against Pompe when my treatment schedule is interrupted.

I started working with my Case Manager at Genzyme months in advance to arrange a Lumizyme infusion while I was away from home. My infusion needed to be scheduled for the first week of my vacation because that was the only time I would be “on land” long enough for it to take place. Dr. Byrne asked where I was staying in California and found a colleague who worked close to Disneyland. Dr. Kimonis at the University of California Irvine agreed to take me on as a patient and supervise my infusion.

My Case Manager worked with the Case Manager for the Irvine area and lined up all the approvals with the hospital and my insurance company. I filled out my paperwork a few weeks before we left on our trip and confirmed my appointment. My first “on the road” infusion couldn’t have gone smoother. Everyone at UC Irvine was so helpful and their infusion chairs are the best I’ve sat in. Everything is push button, to recline, or put your feet up, watch TV, or call your nurse, you just push a button on a single remote. The chair even had heat and massage features.

I do not think this is something that could have been pulled off on short notice. It took a lot of people working together to make it happen. For that, I am very grateful. Had this California infusion not been arranged I would have gone about 4 weeks without a treatment. That would have left me feeling pretty cruddy during the cruise.

With careful planning it is possible to make this sort of arrangement for your infusion. Of course it depends on your insurance, where you are going to be, and probably a few other factors, but I believe it is worth trying if you want to travel and not miss an infusion. Be sure to give your Case Manager plenty of notice to help make arrangements for an infusion “on the go.”

Disneyland, October 2012 with my friends Robyn, Elysse, and Leanna. I’m full of energy because of my Lumizyme on the go!

Status Quo

 

I’m dusting off the blog. I have neglected it. Does that mean there has been nothing to report, or that I have been too busy to sit down and write about it? Well, a little bit of both.

 

I’ve been busy with speaking engagements, but that has more or less become a regular event in my life. In fact, I’m heading to New York this week for another one. I always look forward to meeting new people in the patient community.

 

So what else have I been up to and where have I been? I spoke at a United Pompe Foundation  (UPF) meeting. This time the meeting was held near Duke University, which is one of the few places that has experts who not only know about Pompe Disease, but who are researching new and better ways to fight it. The meeting coincided with clinic hours – meaning patients could be seen by Dr. Kishnani and other specialists at Duke who really understand Pompe. This was especially beneficial to patients who don’t have access to knowledgeable doctors at home. The meeting and clinic appointments were very successful, even the “veteran” patients admitted to learning new things. The dates for next year’s meeting have been scheduled for April 18, 2013. Keep checking the UPF site for more information, or visit this Facebook  page.

 

Genzyme sent me to Nashville, Tennessee to speak to their travel agency about booking travel for patient speakers. I repeated the presentation via video conference about a month later. There really is an “art” that goes into planning and booking travel for patients. I also did a few presentations here in the Orlando area for both Genzyme and the Muscular Dystrophy Association.

 

Sprinkled between my commitment to Pompe education and awareness I of course had to include some personal travel. I’ve been on a few more Disney cruises and am boarding the Disney Dream again in about a week. I went up to Atlanta to visit with my friend Lonnie – who I’m cruising with next week. In October, my friends and I embarked on what we deemed our Epic Disney Vacation. We spent a week at Disneyland in California. I even arranged to have one of my infusions at UC Irvine under the watchful eye of Dr. Kimonis. We went up to Hollywood, visited my friend Matt at the Walt Disney Studios in Burbank, and played tourists at Universal Studios. After a week of California fun we boarded the Disney Wonder for a two week cruise to Hawaii and back.  The trip took a LOT of planning, but it was well worth it because the trip couldn’t have been better.

 

So, as you can see…it has really been fairly routine….for me.

 

Leanna and I with my favorite puppy at Disney California Adventure.

The Lab Rat Chronicles

Over the summer I participated in the Amicus Therapeutics AT2220 Trial. The clinical trial is a safety study of a chaperone drug. The study drug basically does what the name suggests, it works alongside Lumizyme and “chaperones” it, making sure more if it gets delivered to where it needs to go. It is an oral (liquid) medication that is taken about an hour before starting regular enzyme replacement therapy (ERT).

I participated in the study at the University of Florida (UF) – where else? The team up there asked me to participate over a year ago – which should give you an indication about how long it takes to set something like this up and running. Additionally, it is a pretty big commitment on the part of the patient (lab rat) as well as the medical team. I had to commit to 6 separate, carefully timed appointments just to receive a single dose of the trial drug. I underwent several tests, including a couple of punch needled muscle biopsies, hourly blood draws during my infusion, and a couple of overnight stays in the hospital – all in the name of science.

The team at UF is amazing – but that is nothing new to those in the know about Pompe. Of course, I was a little nervous testing a new drug, but I knew I was in expert hands. After all, this is where I first started my ERT, before it received FDA approval and I’ve yet to grow a second head. In all seriousness, I couldn’t ask for a better place to be or with better people to work with. Not only is everyone so knowledgeable about Pompe and all the emerging research, they are simply a great bunch of people – the kind you just want to spend time with socially. It really makes having a sucky disease like Pompe a little less sucky.

The clinical trial is being conducted in 4 cohorts, or groups, each of which will receive a different amount of the trial drug. Patients in cohort 1 received the smallest dose, while those in cohort 4 received the largest. I was in cohort 3 and the trail should be wrapping up very soon. Preliminary data from cohorts 1 and 2 are showing promising results.

It could be a couple of years before the next phase of the trial begins, meaning more patients and more doses. Clinical trials are very closely regulated by the FDA and the smallest little mishap could set the whole study back. Which is why things can seem slow going, but it is really in everyone’s best interest that everything is done exactly right down the tiniest detail. The smallest error could result in a big set back.

Would I participate in a clinical trial like this again? More than likely, yes. I would have to take all the factors into consideration, it really isn’t something to be entered lightly. As I mentioned, it is a pretty big commitment time wise, which can seriously cut into my travel plans. It would also depend on who was running the trial. If it was Dr. Byrne and his crew up at UF and I had time – then, yes, sign me up.

Sincerely,
Your Loyal Lab Rat

Accessible Travel: DCL The Fantasy

After spending hours and hours planning a trip to London and Paris, I ended up taking two Disney cruises instead. Why? It was much easier and cheaper. The more planning I did the more the price tag increased, that coupled with the fact that London is hosting the Olympics this year made the decision to change plans very easy. I have been in cities before and during the Olympics and they are a mess! Everything is ridiculously crowded and over priced, I’m not sure what I was thinking. And now, as I sit here watching the Queen’s Diamond Jubilee and the mobs of people, I’m even more convinced it was a great decision to avoid the chaos of London during a major event. Now, visiting a city after the Olympics is a whole other story….a story I hope to be able to tell you about in the next year or so.

Back to accessible cruising….I wrote about how accessible Disney cruises are HERE. However, after cruising on their newest ship, the Fantasy, I felt the need to share some updates.

One of the issues I had on both the Wonder and Magic were some of the public thresholds. A couple of them were too steep and my scooter would get stuck. I didn’t encounter any problem thresholds on the Fantasy. However, there was a small lip in the threshold leading into my accessible stateroom. I didn’t get stuck, but had to take the door with a little bit more speed and at just the right angle. My stateroom had enough room to maneuver my scooter, a roll in shower, plenty of grab rails, and even an accessible verandah. A fantastic improvement on the accessible staterooms is their self-opening doors. You just swipe your room key card and the door opens…..like magic!

The lifts are also bigger, as the ship is bigger and holds more people it doesn’t really make catching one during busy times any easier. However some are big enough so if I was in one alone I could actually turn my scooter around.

The two main theaters have additional wheelchair viewing areas, opening up the option of sitting somewhere other than the back row – or the front row of the Walt Disney Theatre if you are willing to transfer into a theater seat. In the Fantasy’s Buena Vista Theatre (where they show Disney films) there are wheelchair spaces in the back row and in the middle of the theater. In the Fantasy’s Walt Disney Theatre (where they show live stage productions), you can sit in the back of the balcony or in the back row of the main floor or in the front or middle rows. I do not recommend sitting in the back row of the main floor for a couple of reasons: your view is obstructed by the overhanging balcony, you are right by the main entrance so you are constantly disturbed by people coming and going, and people think this is a good area to bring their crying babies to watch the show – at least they did on this cruise. If you want to sit closer to the stage, which I do recommend, you have to be escorted there by a Cast Member because it involves going into the crew areas of the ship and riding on a small backstage lift.

Cabanas, the buffet, is much more accessible than Topsiders (Magic) and Beach Blanket (Wonder). The restaurant is much more open, instead of one long, narrow serving line, there are several smaller serving stations.

The public restrooms on the Fantasy are kind of a fail in the accessible improvements category. On the Magic and Wonder the accessible public restrooms are basically family/companion stalls located next to the men’s and women’s restrooms. On the Fantasy, there are no such facilities. Instead, there is a wheelchair accessible stall inside the pubic restrooms. This means a guest in a wheelchair has to maneuver through tight turns while dodging other guests using the facilities. Fail.

Both the classic ships and the newer ships offer great accessible cruising. However, the classic ships have a better “traffic flow” design, making them much easier to navigate for guests in wheelchairs and on foot. The new ships also have a cool interactive game called The Midship Detective Agency which sends would-be detectives all over the ship. This game, coupled with the “traffic flow” problems has younger cruisers literally running around the ship making it a less tranquil experience than onboard the classic ships where the children are more “contained.”

Whether you choose to cruise on the newer Disney ships or the classic ones, you’ll find your adventure pretty much barrier free. Happy cruising!

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How do you do it?

I’m often asked how I deal with Pompe so well, where I draw the strength to go on fighting day after day. Well, first off, the alternative is to just sit at home complaining, feeling sorry for myself, and waiting for Pompe to kill me, but that is just not how I roll. The simple answer is that I’m stubborn and I’m a fighter. I refuse to let some stupid mutated genes ruin my life. It does make for an albeit difficult, but interesting life.

Some people just deal with adversity better than others, it is a personality trait. I also draw inspiration from those around me, even those who are no longer here.

When I was in elementary school one of my best friends was diagnosed with a brain tumor. She went through surgeries, chemotherapy, and radiation treatments. The treatments made her very sick and she lost all of her hair. I watched as other kids shied away from her or stared at her, but through it all she remained positive and outgoing. She appreciated the days when she felt good and would want to go out and seize the day. Even if she was checked into the hospital for a multi-day treatment session she would ask her doctor for a “day pass” so we could go to the movies or Disneyland or shopping. It was like she understood without equivocation at 9 years old how important it was to embrace life and enjoy yourself when you could.

I learned how to be a Pompe Warrior from Jaimie. The example she set as a young child continues to inspire me to never give up fighting and never give up hope, to enjoy life and live it to the fullest. She may have been thankful that I remained her friend, that I wasn’t one of the ones scared off by her cancer, but honestly I think I am the one who benefited the most from our friendship.

So how do I do it? I get by with a little help from my friends…..and family too of course!

Today is her birthday. Happy Birthday Jaimie. You are greatly missed and continue to inspire the lives you touched.

“Wouldn’t it be great to be able to fly, over the rainbow and beyond the sky?” -from one of Jaimie’s many poems