CrutchGirl Takes NYC

I wrote a post a few months ago about a trip that I took to NYC. I was only there for a day, but it was enough to scare me away. However, my sister lives there and had been asking me to visit, so after enough pleas from her, I decided to suck up my fears and just go. Alone. To NYC. On crutches. As my health has been really declining. Smart idea? Maybe not so much, but I don’t regret going because even though I felt miserable for much of the trip, I learned a lot, spent time with both of my siblings, and even saw Tina Fey 🙂

NYC was filled with challenges. With each obstacle, I had to decide if I was going to tackle it or not. Most of the time I tried my hardest to keep going, even in the face of pain and fear. There were some moments when I just didn’t feel like I could keep going, but I pressed on through. After all, I figured I could survive anything for just a few days.

Here are some of the challenges/experiences I had while venturing to and through NYC on crutches:

• The airport: I was nervous about security stopping me because of my wrapped foot and crutches. I always think about the time when I was first diagnosed and had to fly to Florida for a funeral. The TSA Agent grabbed my tender, sensitive foot, then proceeded to squeeze and move it while I screamed in pain. Thankfully, this time was different. I breezed through security, boarded the plane first, and had a good experience.
• The Bus: I had to take a bus from the airport to my sister’s place. After figuring out how to get a ticket, I got on and sat down. A few stops later, the bus was completely cramped. I had to push my way through to get off when we reached my stop. The bus ride on the way back to the airport was worse. First, I had to stand because the seats were filled. When I finally got to sit down, a woman bumped into my leg. Thankfully, a nice guy gave me a different seat that protected my leg more. When we reached the airport, I missed my stop and had to ask the driver to wait for me to get off. If people hadn’t already suspected that I was a tourist, they definitely knew it when I had no clue what I was doing!
• Walking around: My siblings are fast walkers, and at times, it was hard to keep up. My sister was very frustrated by my slower pace, so she usually walked a few feet in front of me. She made it very clear to me that I was interfering with her usual routine, which made me feel horrible. I told her that she should be thankful for my slowness, though, because that’s what allowed us to see/talk to Tina Fey on the subway!
• Blisters: My brother and I walked about 20 blocks each way to and from Central Park on our second day in the city. This, combined with the hour or two we spent walking through the park, created some major blisters on my hand and good foot. It was hard to use my crutches for the next few days as the blisters healed, but I had no choice but to  walk through the pain. I mean, really, compared to RSD, should I complain about blisters? Probably not. But they were a challenge to work with. I ended up putting foam padding on my crutches and on my foot to ease the pressure.
• People: In NYC, there is little personal space. People are everywhere! I received lots of stares and questions about my leg, which made me feel uncomfortable at times. I am pretty used to it, but each look is a reminder about how different I am. Navigating through crowds was rough, and I was always concerned that someone might bump into me or cause me to fall.
• The Subway: Goodness, if I go through the rest of my life without ever using a subway again, I’ll be happy. My anxiety spiked every time I had to cross that small gap from the platform to the train. From there it was a race to either sit down (if a seat was available) or hold onto the pole as tightly as I could before the train took off. I only fell on one person (oops), but after that I learned how to do it right.
• Stairs: I appreciated the fact that parts of NYC were very accessible, but I found myself facing large flights of stairs more than I would have liked. There was one day when I was exhausted from walking around, and after making the journey down the stairs to the subway station, I discovered that I would have to go down many, many more stairs before reaching the train. I took things slowly and eventually got there.
• Escalators: I went to the Plaza because my sister told me they had good FroYo. Oh, and I’ve always been a big fan of Eloise, so that was pretty cool. We took the subway and walked a few blocks to get there. When I walked through the doors, I was faced with one option: take the escalator downstairs. There were no other doors, no stairs, no elevator in sight. I hobbled over and tried so hard to get on. My sister went down without me while my brother waited, encouraging me to just do it. I was terrified. Going down non-moving stairs on crutches was hard enough for me, and I was almost certain that I’d fall. I began to cry in frustration (much to my sister’s dismay–she was getting angry with me). Finally, my sister figured out that there was an elevator on the other side of the building. She wasn’t happy about it, but we went outside and around to find the alternative route of getting downstairs.

Okay, enough negativity. How about some of the highlights of my trip???

• I was able to see my sister for the first time since August.
• I got to see my brother and spend more than a minute with him. (He lives in a different state as well)
• I finally met my bunny nephew and got some bunny snuggles.
• I went to my sister’s school and met her students. I even got to sub as a parapro and help one of the kids with his work! It was fun to see where my sister works.
• My brother and I took a lovely trip to Central Park. Yes, it gave me blisters, but it was worth it. We chatted, took pictures, and simply enjoyed each others’ company and the gorgeous nature around us. The weather was perfect, there weren’t many people, and we got lots of fresh air.
• We ate some great food. Macarons, frosting shots, candy, soup, froyo…okay, most of those things are sweets. What can I say? I was on vacation! (Um, but honestly, I eat too many sweets when I’m not on vacation, too)
• We saw Tina Fey on the subway! I think I’ve written enough about this already, but it was really exciting.
• We went to a lot of iconic/famous places. It’s cool to see things on TV and know that I was right there.
• I got out of my comfort zone. Sometimes it’s good to go outside of your own little part of the world and explore new places, even if it makes you uncomfortable.
• I learned that I can push through, even when I feel like I’m at the end of my rope.

Overall, this trip was about how I had imagined it to be. I knew that there would be plenty of struggles, so my pain and fatigue didn’t come as a huge shock. I do wish I could have been a bit more prepared for some things (like bringing better shoes and more medical supplies), but for the most part, I was ready for whatever happened. New York is not my favorite place and I doubt I’ll be returning anytime soon, but I’ve realized most of my dislike for the city comes from my own problems, not the city itself.

“If You Really Wanted to Get Better…”

“If you really wanted to get better, you’d try any treatment, regardless of possible risks.”
“If you really wanted to get better, you’d try harder.””If you really wanted to get better, you’d just drop those crutches and walk already.”

I can’t even count how many times these words, and more, have been spoken to me. I’ve gotten lectures about how I am not trying hard enough to get better, or how I must not really want to get better since I’m still on crutches. I’ve had therapists tell me that my parents were wasting money on me because I wasn’t working hard enough. I’ve had psychologists blame me for preventing myself from reaching remission by not trying everything possible or not giving it my all. “Tell us when you’re actually ready to get better,” they all say. “Otherwise, we’re wasting our time.”

A fellow RSD-er and I were recently having a conversation about how it’s not as simple as these people make it seem. They’ve never personally experienced RSD, so they have no idea the inner battle that goes on. There’s always a sacrifice that must be made when encountering new treatments. It’s not just a matter of stubbornly refusing to try something. For every new medication, there’s a list of possible side effects. For every surgery, you have to weigh the potential risks. Each experimental treatment brings a new list of fears and questions. Every therapy session requires an increase in pain in hopes that maybe it will help. It’s not just like grabbing a magical pill off the shelf and instantly becoming healthy and free.

If someone came to me today and told me that they had a cure for me, no strings attached, of course I would take it. But that simply doesn’t exist. There is no cure. There are no options that don’t require some sort of tradeoff–whether financially, physically, emotionally, or otherwise. It’s just not the way life is.

RSD presents itself differently in each person, and a treatment that worked miracles for one person may not be so fabulous for another. This creates an extra challenge, because you never know if something will work for you or not. It’s like gambling on your health…you have to decide if the potential gains are worth the cost.

To my doctors, family, and friends…YES, I do want to get better. I do want to walk again, ride a bike, go for a run. I want to sleep with both legs under the covers and go into a store without being judged. I want to be pain free, to actually get a full night of uninterrupted sleep. But I also don’t want things to get worse. I don’t want to deal with side effects, with wasted money, with time spent in treatment that ends up having no results. It’s not as easy as it sounds to just take a pill, or to simply throw my crutches down and run laps. It’s not a light decision to take time off from life, to go into the hospital, or to try an experimental treatment. So yes, I do want to get better, but I know that this desire is not without a cost.

If wanting it alone could make me better , I would have been running marathons by now.
If wanting to win a billion dollars could make you win the lottery, we’d all be rich by now.

But this is real life, not fairytale land, and it’s just not that simple.

Your Health, Your Business

As someone who has gone through many different health challenges through the years, I’m used to people talking about my medical life. Now, that doesn’t mean that I like people talking about me, especially behind my back, but it happens. As I’ve grown up, I’ve had to voice my opinions on the matter, setting clear boundaries as to what may be shared and what I’d rather keep private, especially with my family.

Here’s the truth of the matter: Your health is YOUR business. Sure, it may be necessary for caregivers to know about the details of your medical life so that they can better help you, but as far as sharing beyond that, it should absolutely be up to you. Maybe it’s just me, but I really don’t like hearing from someone that so-and-so told them about my struggles, or reading a post on Facebook detailing my current health dilemma. I’d rather tell people myself so that I can control what is being said.

As a relative of mine was talking about another family member’s health issues yesterday behind their back, I started to get angry. I couldn’t just sit there and listen as she criticized his diet and lifestyle, blaming him for his health problems and talking about what a shame it is that his health is the way it is. Knowing that there are deeper causes for his illness, and being tired of people saying similar things about my health behind my back, I had to step in. “Excuse me, but why are we talking about this? I know that I don’t like it when people talk about my medical life, behind or in front of my back, so I don’t think you should be talking about his health behind his back.” She claimed she was “just concerned” about him, but to me, it felt more like gossiping while using “concern” as a cover-up. There are some situations where I just can’t sit back and listen.

Here are some boundaries that I have set to make sure that my health remains my business:

• If a medical update needs to be shared, whether on Facebook, my health blog, or elsewhere, I am the one to post it. Not my parents, not friends, not family members unless they are given direct permission.
• I’ve asked that my medical life remain private. This means that when people ask how I’m doing, my parents give a short answer rather than going into all the details of my struggles. Depending on the person, I may feel more comfortable with elaborating, but for the general population, a simple answer is sufficient.
• My doctors and parents may communicate with my permission, but not behind my back.
• If I share a photo of my leg with someone, it is expected that the photo remains in the possession of that person. This means that texting it to their closest friends or posting it on Facebook is not okay.
• I go to most of my appointments alone. If someone is there to drive me, they sit in the waiting room while I am in with the doc.
• Treatments are my decision. If I’m not comfortable with a certain medication/procedure, I need to have the freedom to say no.

Now, I know that there are some people who have absolutely no problem sharing their medical information with the world. They appreciate the love and support of other people knowing exactly what’s going on, every single second of the day. And that’s great! I actually wish I could be more like that sometimes, instead of becoming so upset when people talk about me. But after having many privacy battles and oversharing of information through the years, I finally had to set some boundaries. Some health matters are sensitive and don’t need to be the world’s business.

Does anyone else have this problem? Maybe it’s just me? Feel free to give your opinion on the matter down below.

Stop Trying to Fix Me

  Yesterday my friend (who I know reads this-so hello!) and I were having a conversation about people who try to give their opinions on your medical matters. Offering treatment advice, trying to diagnose you…you know what I’m talking about. I told her that I’m okay with her giving me advice, only because she was in treatment with me and knows what I’m going through. But not everyone’s advice is as welcomed or appreciated. This morning I stumbled across this brilliantly written statement by MrsWelches Warriors. The truth behind it is so real, and it puts many of my thoughts and feelings into words.

You see, people always try to fix things. Broken car? Take it to a mechanic. TV stopped working? Call someone to fix it right away. Strep throat? Make a beeline for the doctor to get some medicine. We see what’s broken and our instinct is to fix it. But chronic illness is not the same as a broken car. It’s not as easy to repair as a television, nor is it cured by medication like strep throat. No, chronic illness is in a whole different category, one where the “fix it” gloves must come off. 

People with chronic illness don’t just receive a diagnosis and do nothing about it. Well, maybe some do. But most people choose to fight. They see doctors, they read books, they google treatment options. They try to see what works. Once all options have been exhausted, then they choose to accept their new way of living. So when someone says, “have you tried this?” it’s like pouring salt into a very tender, aching wound. Chances are, we’ve tried it…and if we’re still “not better,” that’s probably because it didn’t work. We don’t need the reminder that we’re incurable.

Eventually we come to a point where we choose to accept the diagnosis that is given. We adapt, we make changes, both physically and mentally. We deal with the struggle of remembering the way things used to be, while learning how to make the present situation work for us. We know that this just might be how the rest of our lives will go, but we also entertain the idea of a better future. We research, we look at possible options. We do what we can, what is comfortable and tolerable.

We don’t need people who have never been in our shoes telling us what to do, where to go, or what “magical pill” to swallow.

Before you throw a chronic illness warrior an article from the Weekly World Dum-Dum claiming to “cure” our ailments, take a minute to think. Would this really be helpful? Did they ask for my opinion? Have they already tried this treatment? Unless we’ve asked, we probably don’t want your advice on how to “cure” our incurable illness. Thank you very much.

Friends, family, strangers in the grocery store…stop trying to fix me. Just let me deal with my diagnosis in the way I know how. Stop breaking me even more by giving me your unsolicited, ridiculous opinion. I know my body, I know what treatments are available, I know what has and has not worked. Unless I’ve directly asked for your help, please keep your comments to yourself.

 

 

Road Trips & RSD

Last night my family and I returned from our whirlwind road trip. I never expected it to be a vacation, especially since I had to go to a doctor’s appointment, but we got a lot accomplished.

I’ve always enjoyed a good road trip. Good snacks, the chance to see new places, and time to just sit and do nothing makes for a fun time. Of course, when you add in the complications of crutches and chronic pain, the beauty of the experience fades slightly…but not completely.

Here are some of my road trip essentials:

• A pillow and blanket. Good for napping while in the car (or, in my case, good for your brother to use as a seat cushion…gross) and it helps to have a piece of home when sleeping in other places.
• My phone. I used my phone to look things up online, watch Ted Talks (my fave!), and check my e-mail.
• A phone charger. With the way my battery is zapped while in the car, this was definitely a necessity…especially since we kept having to find directions for where we were going! I know, I know…we rely too much on technology.
• A good book. I wasn’t able to get through much of my reading collection because I can only read in the car for short periods of time before feeling sick, but at least I tried.
• Snacks! I love passing the time by stuffing my face with all kinds of road trip goodies. My stash this time included gluten free pretzels, milk duds, and mixed nuts.
• Headphones. Great for those moments when I just couldn’t handle listening to another one of my dad’s podcasts, the chatter of my family, or the crunching of snacks in peoples’ mouths (please tell me I’m not the only one who is bothered by the sound of chewing…)
• Movies. Before leaving for the trip I went to the library and grabbed some good movies. I only ended up watching one of them, but hey, it helped pass the time for a couple of hours.

We ended up stopping every couple of hours for a stretch break. After being cramped in a car for so long, it feels great to give your muscles a chance to loosen up. Plus, stopping always gave us the opportunity to grab some iced tea or a sweet treat!

Overall the time in the car was as good as it could have been. I watched countless Ted Talks while munching on snacks, so I was good to go! Maybe later I’ll do a recap of the whole trip and the ups and downs that came with it…definitely not a vacation, but it was still a nice change of scenery for a bit 🙂

 

Shopping and The “Someday, Maybe” Pile

Today I enjoyed a lovely day out with my mom and sister. We did some shopping, some food sampling (gotta love local food samples day!), and some driving around town. I, of course, had many people ask about my leg while we were out and about. One lady said, “oh, that’s rough in the summer!” I smiled, said, “yeah,” and kept on shopping. A few minutes later, she appeared by my side again. “So, what actually happened?” After telling her, she said, “Oh, okay. I had plantar fasciitis one time and my foot was like yours so I totally understand.” Um, okay. The comments continued about how it’s a good thing it’s just the beginning of summer (I guess they assumed this was just a sprain and I’d be good to go by next week?) and more questions popped up from other strangers as I made my way through the store. I still think I should just get a t-shirt that explains everything so people don’t have to ask.

During our shopping adventures we went to Kohl’s, one of my favorite places to buy clothes. I usually manage to find at least one thing to add to my ever-growing clothing collection, and today was no exception. Only today, my purchase of jeans went to the “Someday, Maybe” pile instead of being thrown in with my normal clothes.

The “Someday, Maybe” pile is an assortment of clothing that I am unable to wear right now because of my giant foot and sensitive leg. It mostly consists of various pairs of jeans, but there are some other items thrown in as well–long dresses, sweatpants that are too bulky to roll up…things like that. Basically, everything I was able to wear before my flare except for shorts gets tossed into the pile.

I think that in a way, this random group of unworn clothing is a symbol of hope. It means that I haven’t given up yet because I am still looking forward to the day when I am well enough to broaden my wardrobe choices and be comfortable in any clothes. Looking at the pile stirs up excitement in anticipation of things to come, because someday, someday, those clothes will be back on my body, displayed proudly as a reminder of what I will have overcome.

I plan to keep my “Someday, Maybe” pile and will continue to add to it until I am given a definite reason to give up hope. While I am not oblivious to the fact that a lot of times RSD/CRPS never reaches remission, my hope is still alive that maybe, just maybe, I’ll hear that great “R” word again. After Monday’s appointment my thoughts may change, but hey, I still have 2 more days to keep the hope burning.

Speaking of Monday’s appointment, tomorrow will be spent traveling all day so I’ll be MIA for a bit. We have a lot planned for our short trip but I will be sure to give a full rundown of this pain program evaluation when I’m back!

Wishing everyone a low-pain, happy weekend 🙂

Parents & Pain

Okay, can I just be real for a second? I already warned you in the about section that this would include the good, the bad, and the ugly. Now, this post may ruffle some feathers, as I am not a parent myself so I can only speak from my personal experience. I don’t want to sound like a whiny, awful daughter…but I also need to sort out some thoughts. Let me preface this by saying that I love my parents and I am so grateful to them for the love they have continued to show me and the extreme sacrifices they’ve made on my behalf through the years. I’m sure it’s not easy to raise kids, let alone kids with health issues, so I give them a lot of credit. But dealing with parents while battling chronic pain and trying to find independence can prove to be a challenge at times.

Even though I have some of the world’s greatest parents, that doesn’t mean that we always get along. For the most part, we have a healthy, happy relationship. My mom and I have our regular FroYo outings and I enjoy chats and the occasional car ride with my dad. However, once my health becomes a topic of discussion, I completely shut down. I don’t want to talk about it and I certainly don’t care to hear their opinions on the matter.

I think some of my anger about medical discussions comes from the past eight years of my hospital-filled life. When I was younger, my parents made the decisions. They determined the best course of treatment, talked to my doctors, and set up appointments. My mom always stayed with me in the hospital and my dad has usually been very involved in financial discussions and all the logistics. They sort of became my “voice,” squelching out my opinion at times. I understand that at the time, this was totally necessary. As a young teenager who was scared of talking to people and didn’t always know how to make the best decisions, I needed someone to stand up for me. I needed that closeness and I couldn’t have made it without their help. But now, as an adult, things are changing and it’s hard to find just the right balance.

Just yesterday I received a call from the hospital where I have an appointment at next week. “Hello, is this [insert dad’s name]?” asked the woman on the other end. “No, this is his daughter, Rachel,” I replied. “Oh, well your dad called about some paperwork…can you let him know we received it?” I said yes and we ended our call, but I was left feeling annoyed and confused. We had talked about this paperwork and I had told him that I didn’t think we needed to do anything further. I thought the discussion was over, but apparently it wasn’t. This has happened with therapists, doctors…you name it. So where is the line between what is my “territory” and what is my parents’ in this situation? Is it wrong for me to become so mad when my parents go behind my back and talk to doctors without my permission?

The other issue is when my parents try to take my pain for me, as if that were possible. I know that “that’s what parents do,” and that I won’t understand until I myself am a mom. I’ve heard that enough times, but it doesn’t make it easier or less bothersome. For example, my mom recently brought up this new pain program that I am considering. She was talking about how she has so many mixed emotions about the appointment, and then went on to talk about what will happen if I decide to participate in the program. “You know, they’re going to take away your crutches,” she said. I obviously knew this and was starting to get upset that the topic was even being discussed. “That really scares me. A lot,” my mom continued. This is where I began to shut down but tried to explain my thoughts on the matter in a respectful manner. “Mom. You can’t just say that. You don’t even understand. How could you? You’re not in my shoes. Why are you scared? That doesn’t help me one bit.”  She tries to feel my emotions for me, as if that might help, when in reality it only makes things worse.

When dealing with my health, I find it easier to be independent and do my own thing. I don’t like having onlookers or people giving their opinions about my progress or treatment methods. I tend to work harder and focus better when I’m alone and without my parents, siblings, or really anyone else for that matter. I don’t like people seeing me in pain and I also don’t like the nonsense words from people who really can’t relate but pretend to feel all of my emotions for me. I just can’t handle it.

If anyone is still reading this, kudos to you…and I’m sure you’re rolling your eyes at my rant. I probably sound like the biggest brat ever, and I’m sorry for that. I wish I could be a better daughter, I wish I didn’t get so mad about such sensitive subjects. I have worked extremely hard, both alone and with therapists, on bettering my attitude toward medical conversations with my parents, but I still can’t seem to get over some things. I am eternally grateful to have such amazing parents, and I feel bad when I hurt them. I suppose I’ll never quite know how they feel until and unless I’m in their shoes, with kids of my own.

Does anyone else have issues with talking about pain/health with family? Any parents out there who have dealt with the flip side of things?

Potential

My family is in the midst of so many changes at the moment. I moved back home, the sister is interviewing in other states and looking for jobs, and my younger brother is deciding what to do next year. This summer, we’ll all be together, but it might be the last summer we’re home.

I guess that’s part of life. We grow up, find our passions, and go boldly in the direction of our dreams, being pushed by curiosity and ignoring the fears. Well, some of us ignore those fears better than others.

I wish I could be fearless. I wish I could do what I want and achieve my dreams without once fearing what might happen. Whenever I start to think about my plans for the future I start to feel excited but soon become bogged down with the fears and negative thoughts. The ideas seem great in theory but I don’t have the courage to make them reality.

Sometimes I think my RSD is used as an excuse for why I’m not further along in life. I think about getting a job, but then the logistics of being on crutches (and therefore being automatically judged based on my disability) complicate things. Instead of graduating from college this year, I am trying to play catch up from all the time I’ve had to take off. I talk about how I am not doing much with my life, while my sister is pursuing her dreams, and my mom says things about how  maybe things will change “once I’m better.”

I do know that everyone has their own path in life. I know that not everyone even goes to college, so I shouldn’t use that as a way to gauge how I’m doing. I know that I have had a lot of medical issues, so those could be explanations rather than excuses for the delays in my journey. It’s just hard sometimes to watch as my childhood friends and siblings grow up and develop amazing lives while I still feel like a 12-year-old who has little to show for her time on earth.

I’m trying not to let my obstacles completely block the path that I’d like to take in life. I’m still going to college and applying for grad school next year. I have a job at my mom’s drama camps this summer so I will stay busy and involved with that. I do work around the house, cleaning, organizing, and cooking when I can. I try not to stay on my computer all day and I am intentional about doing at least one productive thing per day. However, I still feel like I could do more.

If I hadn’t been dumb enough to jump in a pond 21 months ago, my life would have looked completely different right now. I would have studied abroad, gotten a job, and I’d probably have a spot in a grad school program by now. But I can’t get caught up in that ideal life, because for all I know, those plans could have failed even if I had two working legs.

I think everything happens for a reason, and I also believe that it will all work out someday. Until this potential becomes a reality, I can rest in the fact that I’m where I am supposed to be in this moment, and things will change eventually.

 

Mother’s Day

Happy Mother’s Day to all the wonderful moms, moms-to-be, and people who take on the role of a mom out there! It takes a special person to be a great mom. I am thankful to have an incredible mom who blesses me on a daily basis, and I could never thank her enough for all that she does for my family.

To those out there who struggle with this holiday for whatever reason, know that I am thinking about you especially today. For my mom, this day brings up memories of her own mother who passed away a few years ago. I know people who have broken relationships or who are desperate to become a mom, and I am thinking about those brave women who have to watch as everyone else celebrates and changes their Facebook profile photos or posts pictures of their mom on Instagram. I’m sure days like today only add salt to the wounds, but I hope and pray that better days are ahead and the holiday will soon be a reason for joy.

The people who deserve the most respect and recognition today, in my mind, are the moms out there who take care of their sick kids. Dealing with typical illnesses such as the flu or strep throat are an expected part of motherhood, but I’m sure many of our moms didn’t exactly sign up to have chronically ill children.

I don’t think my mom looked at my face when I was born and envisioned countless nights on tiny hospital beds or endless days filled with worry. She never planned on having to watch as her daughter screamed bloody murder, while she was forced to stand there, unable to help. I’m pretty sure she never imagined she’d be sending her child across the country to the middle of the desert at age 15, to Nashville at age 16, or to Cleveland multiple times, all for lengthy stays with limited contact. In her dreams about becoming a mom, I’m positive that RSD, CRPS, or eating disorders never crossed her mind. She never signed up for any of this, and yet, that’s what she’s had to deal with.

My mom has handled all of my issues with such love and grace. She has dealt with horrible doctors, crappy sleeping situations, distance from her family and other kids, and messy situations…all for me. She flew me all the way to Arizona and had the courage to walk away from me, knowing that leaving her daughter in this unfamiliar place was what was necessary to save my life. When that place did its job as being “life support” temporarily but failed in the long run, she once again took me to a new state and said goodbye with tears in her eyes. It’s not in a (good) mother’s nature to be willing to send her children away, but she did it because she knew that that was what I needed. She sacrificed her own pain and heartache for the possibility that I would have a better life.

I can’t even imagine the amount of time my mom has spent praying for me, crying for me, and worrying about me. She had to deal with my anger and harsh words toward her when I was writhing in pain, both physically and emotionally. She had to listen as I screamed and shouted about how much I wished I were dead, and she often had to go against my own (unhealthy) wishes because she knew what was best for me.

My mom has been through so much but she continues to embrace life with a smile. Rather than giving up when things got tough, she pressed on and has served as an encouragement and inspiration to those around her. She always reminds me how much I am loved and how proud she is to be my mom, even when I’ve put her through hell and back. I will never fully fathom how strong she is and the deepness of her love and sacrifice for my family.

Happy Mother’s Day, Momma. I look forward to so many more memories and fun times together in the future. Keep up the good work, because you are one outstanding woman.

(Photo Credit: Burning for a Cure)

Right Here, Right Now

“So, are you in pain right now, at this very moment?”

This was one of the frequently asked questions this weekend as I met and talked to different people at my Grandpa’s funeral and visitation. My Grandma has told everyone about my life and my various challenges through the years so when they saw a girl on crutches, they knew it was me.

“Are you Rachel?” I was asked that question more times than I could keep track of. “How did you know?” was usually my response, accompanied by a polite smile. There were even times when I was sitting with my siblings or cousins, and people would know who I was but had no clue who the others were. All they knew was that I was the girl with all the issues.

People had so many questions and comments. They asked about my life, my pain, my future…it seemed like nothing was off limits, even to these strangers. I’m used to lots of curious people so I did my best to keep my cool as I answered them all. We even got to the point where I was going to pretend that my cousin was “Rachel” so they’d talk to her instead (after all, they wouldn’t know the difference, especially if I made up a different excuse for my leg!) That plan never became a reality though, which in hindsight is probably good. People are on edge enough at funerals and it might not have been kind to confuse them.

I felt awkward/bad that all these people knew all about my problems but they knew nothing about my grandparents’ other four grandkids. I guess that’s what happens when you’re the “sick kid” in the family. I can’t say that I particularly enjoy the extra attention and nosiness, but I do appreciate the fact that strangers have taken the time to think about and pray for me daily. It’s touching to know that people care.

I must admit that I am happy to be done with all this sad funeral stuff. The questions, comments, tears, and long days were exhausting, but I am glad that we were able to honor my Grandpa and his legacy. I miss him so much and my new goal in life is to follow in his footsteps and be the best that I can be.

Oh, and to answer the ever-popular question, yes. I am indeed in pain right here, right now, and every moment of my life. But I’ll put a smile on and say that everything is fine because that’s what I know you want to hear. Thanks for asking 🙂