A New Direction: Redefining Life With Chronic Pain

Redefining My Life With Chronic Pain

As I have mentioned 2014 has not been off to the greatest start and honestly I feel like I have spent most of my time passed back and forth between my doctors with one saying the other was the problem. The pelvic specialist thought that my Celiac was the problem. My GI thought that scar tissue was the problem. My pain specialist just thinks I am falling apart. Needless to say I have struggled staying positive and often wondered if I was just a lost cause and if chronic pain would continue to define my days.

Last week I had an appointment with my primary doctor so we could just lay everything out on the table and come up with a plan. We were able to look at all of the test results and procedure results along with my history. She has been my doctor from the beginning so after almost 11 years, she and I had quite a bit of history. I know that God had designed for our paths to meet as He knew the type of support I would need for my journey. As a scared college kid, I sat in the office of the new doctor who had just come to town. Coincidence? I think not. Within three months of my initial exam, I was diagnosed and began treatment for endometriosis (some women have to suffer for years before nailing down the diagnosis). In all of the time since then she has never once made me feel like I was crazy. Never once has she doubted or brushed off my experience. Never once has she made me feel like I was just a number. Over the last 11 years, she has laughed with me and cried with me so when I felt like I was at the end of my nope, I knew that she could help pull me back in.

So last Thursday she and I along with my husband (and the NP student who just happened to be shadowing my doctor), we laid everything out. Surgery was definitely not an possibility because I am so high risk because of my history of adhesions and obstructions. At this point surgery would only be an option in an emergency (like another total bowel obstruction). I felt relieved (as I still have nightmares about my last surgery) and overwhelmed (as I wasn’t sure what other options we had).

We decided that the next step should be getting a second opinion from a pain specialist. If you have read my blog for awhile, you may have noticed that I am not too fond of my current pain specialist (and I happened to find out that the other doctors in the area aren’t fond of him either) but being in a small town and knowing all of the restrictions involved in seeing a pain specialist, I was too worried that attempting to find a new one would cause problems (such as looking like I was shopping for prescriptions).

With the assurance of my doctor, we knew that the time had come to get a second option. My current specialist only wants to treat the pain with medication and honestly at this point, we aren’t sure if they are helping or hurting so it is time to explore new options (such as a nerve stimulator).

While it may not look like we made great strides in that appointment, I feel very positive about the direction we are taking and more confident that I will not have to continue to live with this amount of pain indefinitely. I feel like there is hope that I regain some type of normal for my life. Pain will no longer define my days and that feels awesome.

How To Be Courteous To Guests With Wheelchairs at Disney

Disney-Guests-With-Wheelchairs

Our visit to Walt Disney World in Orlando, FL in December was our second trip to Disney with our daughter and my family. It was also the second trip that I would be using a wheelchair to tour the parks. On our first visit, I was four weeks post-op after a laparatomy threw a wrench in our plans. My entire family was going on the trip so we couldn’t reschedule the trip but using a wheelchair allowed me to make the best of our trip and it was definitely a great decision! This visit I wasn’t post-op but because of the state of my health and pain issues, I knew that using a wheelchair again would be the best way to go. It allowed me to save the energy I would have used walking so that I could actually enjoy the time and experiences with my family.

I did learn some things though about society that reinforced my belief that there should be a mandatory class on manners before being released into the world.

These are three things that I wish people understood in order to be courteous to guests with wheelchairs at Disney (or any other public place for that matter):

1. Understand the importance of personal space.

One of my favorite experiences from our week at Disney was seeing the Osbourne Family Spectacle of Dancing Lights at Hollywood Studios. It was breathtakingly beautiful but it was also an absolute madhouse and packed with people. I might as well of had people riding on my lap it was that crowded. One thing I don’t think people don’t understand is when you are in a wheelchair, you are sitting at half the height of the crowd. I wasn’t shoulder to shoulder with a couple hundred of your not-s0-closest friends, but I was waist high with a couple hundred not-so-closest friends. If you are the slightest bit claustrophobic, it increases ten-fold. By about halfway through the lights, I became so panicked that I had to find a way out as quickly as possible. We all value personal space but when your perspective is much lower when seated in a wheelchair, personal space becomes much more important.

2. Don’t cut someone off. 

I know everyone wants to catch the perfect picture of Cinderella’s Castle as you are walking down Main Street at the Magic Kingdom. I totally get it but don’t stop short in front of someone in a wheelchair (or pushing a stroller or anyone for that matter) and get miffed when you get bumped. Its rude and stupid. Pay attention to the people around you. If you see a great shot, need to look at the map, or need to send a text, step to the side.

3. Don’t judge.

Not all illnesses are visible so just because you don’t think someone looks sick, it doesn’t mean that they aren’t. Disney offers a Disability Access Service card that works with guests that are not able to utilize the conventional queue for attractions. At this time, while I utilize a wheelchair to get around the parks, I do not feel like I need additional assistance so I park my chair and wait in line for attractions like other guests (we make it a point to travel in the off-season to avoid large crowds and wait times). While I feel like I am making the best personal and ethical decision at this point in my life, it has opened up the opportunity for judgement when people see me get out of my chair. Just because I can walk doesn’t mean I can walk the whole park. Just because I’m young (and have purple hair), it doesn’t mean that I am faking my illness. I may need a DAS card in the future but for now I would rather give that spot to someone else who needs it (how I feel about those who abuse the system is a totally different argument for a different day). Disabling illnesses affect people of all ages and backgrounds and are not always visible. In the US, approximately 96% of individuals living with a chronic illness have an illness that is invisible (source). Living with an illness is difficult enough without having to worry about judgmental stares from strangers.

Disney-World-Guests-With-Wheelchairs

With all my heart I believe that Disney is a magical place and plan to continue to share the magic with my family for many years to come. I just hope that one day the magic helps all of us overcome judgement, see everyone as a beautiful and wonderful creation, and treat everyone with all the respect and compassion they deserve.

Three quick tips if you will be renting a wheelchair at Disney:

1) Purchasing a multi-day (length of stay) rental pass saves money. A single day pass is $12 a day but a multi-day pass is $10 a day so I was able to get  my 6 day rental pass for the price of 5! Every little bit helps! Plus I didn’t have to wait in line the rest of the week and could just show my receipt to the cast member to receive my chair.

2) If you are going to be visiting the parks during a peak season, especially if you are using an EVC, you may want to consider renting from an outside company as park rentals can sell out quickly as they are rented on a first-come, first-serve basis. During our visit in December, it was a crowd level 3-4 (on a scale of 10) and there were days that the EVCs were sold out.

3)Bring a wheelchair pad or something to sit on! Those babies have no padding and can put a hurtin’ on your bootie by the end of the day!

Do you have a tip for visiting Disney (or any other theme park) with chronic illness or is there something that you wish others knew?