Butterflies in My Stomach

I woke up this morning (well, actually, I never fully went to sleep…so that should say I got up off the couch) feeling nauseous and dizzy. I had an appointment at the Vascular Institute, so I knew that I needed to get ready for that. I assessed the situation, wondering if my feelings were from pain or from real sickness. I chalked it up to anxiety, since things have been pretty stressful lately. My dad asked if we should cancel my appointment, but I knew that I needed to go. I hopped in the car, plastic bag in hand and stars in my eyes.

I didn’t expect to see my doctor today. I was told that it was simply a dressing change with my nurse, but she informed me that Dr. A wanted to see me. He asked how things were going, noting that my foot had not improved since Friday. He said that he had talked to 4 of his colleagues, and they all said that amputation is the best option. “We all have daughters of our own,” he said, “and we all agree that if you were our kid, we would have you get an amputation.” I asked him a string of questions, trying not to cry. He was patient and kind, giving me straightforward answers. For a moment, I felt a tinge of hope. Maybe he’s right…maybe things will get better if I just go for it. Even if my pain is only lessened a bit, it will be better than nothing.

Dr. A said that he would do the surgery within the next few weeks so that I could recover over Christmas and hopefully still return to school in January. I sort of had an idea that it might happen sooner rather than later, but when we’re talking about losing a limb in a matter of weeks…well, that’s a bit frightening. No wonder my stomach has been churning. He said that I’d have to be ready emotionally before we could go through with it. It is a huge deal, after all. But he said that if we let it go any further, even the smallest infection could compromise my life or cause me to lose even more of my leg. It’s kind of like being stuck between a rock and a hard place: do I have my leg chopped off and risk pain/complications, or do I wait for an infection to pop up and risk even more?

I’ve kept quiet about this whole situation, not telling many people. Well, except for my friends in the blogosphere who hopefully don’t know me in real life. I’ve told my parents, I talked to my friend/mentor, and I let my younger brother know that amputation is a possibility. I think my mom has told some people (against my wishes), but for the most part, I’m trying not to make it a big deal. I don’t even know if my sister knows–I told her that my doctors were thinking about it (before this appointment), and all she said was, “yeah, but they’ve told you things like that since you were 12. I don’t think it’ll happen.” I don’t want to make a huge announcement about it while there’s still a chance it won’t happen. I don’t want questions, comments, and alternative treatment ideas from my friends and family. I think the other part is that if I make it a big deal, it will begin to feel too real. Yep, denial is sometimes easier than facing reality. I want to be at peace with my decision before informing my loved ones.

There is nothing that can truly prepare a person for the loss of a limb. I’ve looked at Facebook groups and support websites for amputees, and that has helped a bit. I think I’m approaching this whole situation from a bit of a distance because it’s not a definite thing yet, but at the same time, I want to be ready if it should happen. It does help to see stories of people who have gone through this decision process and came out stronger. I just hope I make the right choice.

As of now, no surgery plans are in place. I have to have a meeting with my parents and doctor soon, which I’m sure will be uncomfortable. I’m writing down all my questions so I can be well-informed as I make my pro/con list. I’m thankful that Dr. A answered many of them today (did you know that it only takes an hour to have your leg chopped off??? Yeah…) but I know that more will be coming. This is absolutely the hardest and most permanent decision I have ever had to make.

I’m trying to relax my mind and get rid of the bad butterflies in my stomach. Keeping a positive outlook has been helpful–I’ve been thinking a lot about the things I’ll be able to do if I go through with the surgery and all goes well. I’m remaining cautiously optimistic, knowing that there is great potential for wonderful things but still reminding myself of the risks.

At some point I’ll just have to drop my fears and do what I feel is right. It’s just the process of getting there that’s difficult…

Thanks for stopping by 🙂

The Only Way Out is Through

There are many situations in life where I wish I could choose a different path. I wish I could scoot over my problems, wiggle around my health issues, and magically appear on the other side of my challenges. As I’ve learned many times, there isn’t always an easy way. You cannot simply snap your fingers or click your heels and appear on the other side of the mountain that is standing in your way. Sometimes, the only way out is through.

 I recently received an envelope in the mail from the Lymphedema center. I was nervous to open it. I just wanted to be able to push it aside and pretend that this never happened. After a while, though, I finally put my finger under the seal, ripping the envelope open. Inside I found a calendar with a months’ worth of appointments along with the usual new patient forms. Suddenly, it became even more real…and even more frightening.

I’ve been told that this next part of my journey will involve more pain and more time spent at the hospital on an outpatient basis. My old PT told me that I have a tough road ahead. My doctor reiterated, multiple times, how this will not be easy. She said that the new doctors and therapists will grab my leg and wrap it tightly, paying no attention to the amount of pain that I will be in. “They’re used to patients being in pain,” she said, saying that the only medication I’d be offered would be Tylenol for inflammation. Needless to say, I do not feel prepared for this tough road, but I’ve been given no alternative options.

The only way out is through.

I feel like my hands have been tied. There are literally no other options. Unless I want to sit and let my foot explode until no salvageable pieces remain (okay, that’s a bit extreme…but really. My foot is literally breaking open right now and leaking lymph fluid. Gross.), I have to do what the doctor ordered. I can only ignore it for so long.

My first Lymphedema appointment is this Thursday. While I wish I could close my eyes and forget that this never happened, I know that I must put on my brave face and fight on. None of this is easy. Nothing about having chronic illness is simple or fun. But we were never promised an easy road. Life is messy. It’s a crazy roller coaster ride that I often wish I could get off of, but the only way out is to go through the ups and downs, hoping that there will soon be an end in sight.

As Winston Churchill famously said, “If you’re going through Hell, keep going.” Instead of crouching down and hiding from this next obstacle, I must stand up tall, gather up my courage, and prepare to defeat this monster. If the only way out is through, then I’ll keep trudging on until I find myself on the other side.

{Photo Credit: Be Mindful and Fuel}

Vulnerability

I recently had a dream…well, more of a nightmare…and it has stuck with me. I was sitting on a bench, crutches on the ground beneath me, when a man came up to me. He was rather abrasive and I felt trapped as he tried to talk to me. I was scared, and the passersby didn’t seem to care. I wanted to run, but my crutches were out of reach and I knew that if I tried to grab them, then the man would see my vulnerable side and use it against me. I was cornered, stuck between two large rocks with nowhere to turn.

I woke up and was very thankful that this was simply a dream. But it made me think about some of the fears/concerns that I have with being on crutches. Personally, I feel more vulnerable because I’m on crutches. I don’t meant to say that I feel weak, just that my need for my assistive devices makes me feel more susceptible to trouble. I feel like my pain can be used against me, and I don’t like it. I don’t like feeling like at any moment, a person can have so much control over me just by taking away my crutches.

I’m taking another trip to NYC in the near future, so I think that’s made me think of my vulnerability more. As much as I’d love to traipse around the city, exploring new things, I can’t help but feel like my shiny sidekicks make me an easy target for any trouble-makers on the streets. I’m not trying to say that NYC is some super dangerous place, because I don’t think it is. I’m just saying that with crutches, I feel like the potential for shenanigans increases. I mean, I feel the same way here at home, but in a big city, the anxiety is multiplied. I’ve stopped to think about how this situation might be different if I were on two feet. Would I feel as afraid? Would I be more willing to explore? I do think that I’d still have quite a bit of fear, since I’m not one for large places and crowds, but I feel like I’d be more confident about going out alone if I knew that I could easily run away, should anything happen.

I used to joke about taking a crutch self-defense class before I switched schools. I think that my crutches could be used for that purpose, but they can also be taken from me and used negatively. I’ve gone through so many scenarios in my head of how I’d escape potentially threatening situations, so I have some ideas on how to be safe. I mean, I’ve even watched Youtube videos on crutch self-defense. The real fears I have are about getting into that sort of situation to begin with. Would someone choose to mess with me over someone with two working legs, simply because I look less capable of fighting back?

I certainly don’t want to make a statement about people who use crutches as a whole, or even broader, people with disabilities. I know that there are many people out there who, despite any assistive devices they may use, could easily win a fighting match. For me personally, though, I feel more anxious and vulnerable with my aluminum sidekicks.

Am I the only person who feels this way? Any tips on getting over the anxiety?

Not All Wounds Are Obvious

People always think that I’m limited by my crutches. They assume I can’t carry things, go long distances on [one] foot, or do household chores. They see me doing something and they want to jump in and help. Truthfully, I don’t feel limited by my aluminum sidekicks. Sure, I do stumble across the occasional task that is not safe/smart/doable on crutches (like holding a newborn), but for the most part, I can keep up with the average person.

As I was vacuuming the other day, I realized that there is something beyond what people can see that does limit me. It’s one of those things that isn’t talked about, or that people tell you to just “get over” rather than offering to help. While cleaning the house, I realized this:

My invisible challenge limits me far more than the visible one.

What is this invisible challenge that I’m talking about? Well, the answer to that is anxiety. You see, people see my crutches and immediately ask if I need help, but they don’t see the anxiety that is really causing problems. They don’t see the times when I’m paralyzed by fear and sit on the couch all day, not even getting up to grab some coffee. They don’t see the thoughts and worries that roll through my head when I’m invited to a social event. They don’t see the sleepless nights, the sweaty palms, the racing heart. Even if they did see it, there’s no simple fix. They can’t just carry a piece of it for me like they carry my grocery bags.

I’ve struggled with anxiety for as long as I can remember. When I was young, I didn’t know why I was always so afraid or why my mind never stopped racing. I thought I was just some messed up kid. As I grew older, I realized that it stemmed from anxiety, and more importantly, I discovered that I was not a freak. I learned that I was not alone in my struggle.

A few months after this latest RSD/CRPS flare began in 2012, I was in a physical therapy session. I was so frustrated and overwhelmed because I wasn’t making any progress. I had been through the pain program there twice before and I was up and walking in no time, but the third time around, things were a lot different. After three weeks, I was still unable to put my right foot on the ground. My PT asked me to do an exercise where I had to simply place my foot on a bolster pillow and roll it back and forth. Simple, right? Well, I just couldn’t bring myself to do it.

“Why does it take you 43 times to do things right?” my Physical Therapist asked, obviously frustrated. Then she paused and said, “I think I know why. I’ve been thinking about this all week. I think you have a lot of anxiety, and it’s really holding you back. I know that you’re not intentionally avoiding exercises; your anxiety is just preventing you from being able to do them. I’ve never had a patient with as much anxiety as you, and I am getting to the point where I’m really not sure there’s anything else I can do to help you until you get this taken care of.”

I was really surprised by my therapist’s words. I hadn’t connected my anxiety with my lack of progress, but once she said it, things began to make sense. It’s like the days when I know I have to get out of bed, or do the dishes, or go get the mail…but I physically can’t bring myself to do it because my anxiety is so strong. I knew that I had to put my foot on the pillow. I knew that I needed to sit with my legs uncrossed. I knew that I couldn’t just swim in the pool without actually doing my exercises. But something prevented me from following through, and that was anxiety.

My conversation with my PT opened my eyes to realize that there are deeper struggles that I sometimes accept as just a part of who I am, when really, life isn’t meant to be that difficult. She recommended medication, which I began shortly after. It did little for the anxiety, so I discontinued it a few months later, but it was a reminder to be more conscious of my thoughts.

Through many hours of therapy, I’ve been able to overcome some of my anxiety. I can talk to people, go out in public, and stay home alone without freaking out…well, most days. But that doesn’t mean that I’m free of struggles. I go to war against anxiety daily. I fight battles that people can’t see from the outside. They see the crutches and assume that those are the worst part of my life. They think that my only problem is my leg. They don’t see what’s underneath.

If you have anxiety, know that you are not alone. Anxiety is a monster, and its force can feel strong. But you are stronger. Having anxiety doesn’t make you some crazy person. It doesn’t make you weak. It doesn’t make you weird. I know how the thoughts can spiral and the world can feel like it’s closing in. I know the attacks, the fears, the frustration. Anxiety can grab us and make us believe things that aren’t even true. But we can fight back. We can step in and conquer the monster, one step at a time.

{Via Picture Quotes}

Mindfulness

Mindfulness. The word alone makes me cringe a bit inside after the absurd amount of times I’ve heard it in various hospitals and treatment centers. Ick. I have flashbacks to the oddly-colored sign in the psych ward dining room, promoting mindfulness and peace. The word brings up memories of sitting in a hospital meeting room with a bunch of other pain patients, discussing ways to take our focus off of the pain. I never thought I’d actually practice this skill, but now I am realizing that I have been practicing mindfulness without even realizing it.

So what is this crazy concept? Being mindful…of what? Well, the way I understand it, mindfulness means living in the moment. It means focusing on the present rather than what has happened or what will happen in the future. It’s about becoming aware of your thoughts but not letting them get to you. Mindfulness keeps your attention on what is happening in any given moment instead of on things that are simply out of your control.

I used to let my mind wander to crazy places. I’d think about things I could have done differently or what might happen in the future. While I still have these thoughts, I don’t obsess over them anymore. I don’t let next week’s appointment tear me down while I’m trying to enjoy a sunny day. I don’t nitpick old conversations, beating myself up while I’m trying to have a new chat with someone else. I let these thoughts enter my mind, but I don’t dwell on them for too long.

Now that drama camp has picked up, my life has gotten really busy. Despite the increased fatigue, I am grateful for this change of pace. Having a full schedule prevents me from having too much time to think. When I have endless days of nothing to do, mindfulness becomes an obsolete concept as I become twisted in my thoughts. But when I spend my days with other people at camp, my focus is on doing my job.

Too often we find ourselves getting worked up about things we can’t change. You really can’t go back and edit your life, so why is it that we think so much about the past? Obsessing over the future isn’t going to do much either, because things could change so quickly. But the present moment? That’s what deserves your attention. Because soon this moment will pass, and it will become just like every other…a memory in the past, unable to be changed or redone.

NYC on Crutches

Part of my family’s road trip adventures this week involved a couple of days in NYC. I had been when I was younger and enjoyed it, but this was the first time exploring the city on crutches. When you add in the fact that I ventured into NYC right after a terribly disappointing doctor’s appointment, you might imagine the kind of mood I was in at the time. Not good. So this is just about my personal experience of one (grumpy) day in the city, not necessarily a reflection of NYC as a whole.

We took a train from Hoboken into the city so we didn’t have to mess with driving. We found an elevator and figured out where we were going. Once we reached our stop, or the stop that we thought we were supposed to meet my siblings at, we got off. After making the trek up the (many) stairs, we soon realized that my brother and sister were actually 9 miles away. I was willing to take the stairs back down to take another train, but my mom didn’t want to mess with it. At that point we were hungry so we bought some food and grabbed a cab.

When we finally found my siblings, I ate my lunch, bought some watermelon juice (which was amazing), and took a moment to calm down. I was super stressed at this point. I’m an introverted, socially anxious, peace-seeking kind of person, so the swarm of people and high stress levels of my family members were not a good match for me. Eventually things started to improve. We found an apartment for my sister, walked by the place where she’ll be working, and did some shopping. Things were better by the time we reached our car later that evening.

That was just one day in the city. The next day was much better, but we were more in the boroughs rather than in the heart of NYC.

So how was NYC on crutches different than it was the last time I was there? Well, there were a few differences…

-Accessibility of transportation: I already mentioned the endless stairs to get in and out of subway stations. While we were able to find elevators in some places, that wasn’t always the case. I don’t mind taking stairs but with the busyness of the city, I felt like an inconvenience because I had to take things slowly, one step at a time. As a side note, I think they should install slides or something on the sides of the stairs. Wouldn’t that be fun?
-People: It’s NYC, so of course there were people everywhere! I was afraid that someone might bump into me, causing me to fall.
-Busyness: Everything felt so rushed. People had places to go and we had things to check off our to-do list. It’s hard for me to go fast without tripping, so this rapid pace wasn’t a great fit.
-Subways: These were fine when they weren’t full, but in the evening, there were lots of people riding the subway. At first I wanted to stand and not bother anyone to move, but then my mom made me sit down. I did, but soon discovered that this was even worse! It was cramped so people were uncomfortably close to my leg. Also, lots of people took their time to stare at my giant foot. I know that looking down is less awkward than looking at everyone’s faces, but come on. One guy stared for a solid ten minutes. If they just asked then I would have told them about it.
-Tiredness: When I was younger and healthy, I had enough energy to last for days. But after an already exhausting morning at the doctor, my tiredness rapidly increased. My family kept wanting to see more things and walk to more places but I had trouble keeping up. I just wanted to go to sleep.
-Attitude: Of course, things are always better when you’re in a good mood. Next time I will have to put on a better attitude before throwing myself into all of that.

I’ve already said that this trip wasn’t a vacation. We had things to do and felt rushed for time. Now that my sister is living there, I’ll have more opportunities to remake memories and create a better mental image of NYC. I already have a list of things that I could do differently next time to make things work. I’ll be more prepared and remember to put on a smile and an open mind before venturing into the city.

To those of you who live in NYC, I don’t know how you do it. I guess you get used to that sort of lifestyle, but for someone who’s used to a slower pace with less people, that big city is overwhelming! I guess we’re all wired up differently. The world would be so boring if we were all the same 🙂

Nervousness and New Appointments

One week from today I will be at a new hospital, in a different state, having an evaluation for a pain program. I have had many feelings about this appointment that has been sitting in my calendar for months, but right now I am mainly feeling nervous.

My family and I will be traveling 12 hours for this appointment, so as you can see, we have run out of nearby options. Thankfully we now have other reasons for traveling so far (seeing family, apartment hunting for my sister who is moving out that way, sightseeing…), but the original purpose for this trip was to have this evaluation.

I’ve been through the Cleveland pain program 4 times, so I sort of know what the general outline of this new program will look like. Sort of. I’m hoping they have a bit of a different approach since Cleveland was a bust, but we’ll see. One difference between this program and Cleveland is that I never had an initial evaluation for Cleveland; I always got right in. For this hospital, you need to have an evaluation and then wait some time before being admitted if that is the determined course of treatment.

Why am I so nervous? Well, for one, I feel like this is my last chance at getting help. I’ve tried so many other therapies and treatments, and I was extremely hesitant to even bring up the idea of this program because I didn’t want to get my hopes up. I’m also afraid that something might happen to cause me to be a bad candidate for this treatment. I’m not sure what that would be, but if I were to be denied this help, I wouldn’t know where else to turn. I’m scared of failing at yet another attempt in getting better, of being like this forever, and of having to change the goals and dreams for my life.

Of course, the most obvious reservation to doing another pain program is, well, the pain. In order to get better you have to literally go through hell. No meds (not that I’m on any to begin with), no stopping, no chickening out. They push you to the limits, past the point of tears. I’ve tried doing therapy on my own by moving my foot with my hands, trying to straighten my knee, and doing some desensitization. However, all of that will be nothing compared to what they put you through in a pain program. I know that they take away your crutches, which sort of freaks me out but it makes me excited at the same time. Being able to reach a point where I can be free and unhindered by these two aluminum sticks would be incredible.

I’m sure I will be a mess come next Monday, but I’m trying to control my emotions and keep an open mind. With my tendency to overthink things, I can get into trouble by going through all the “what-ifs.” I can’t wait to be done with all of this waiting and actually have a plan in place.

Tomorrow’s adventure includes tackling the dentist, which is something I have put off for way too long because the chair is so uncomfortable. But hey, might as well get all the scary appointments out of the way before summer picks up!

Happy Monday, all!

New Beginnings

Today is an important day in my life because it marks four years since I got my life back. You see, four years ago on this date, I walked into the doors of a girls’ home/treatment center in Nashville, Tennessee, afraid and alone. I entered the doors as a depressed, anxious, suicidal girl with anorexia and a cutting addiction. I had little hope, but decided to try one last time to get things back on track.

Walking through the doors of that home was the best decision of my life. It was also one of the hardest decisions, because I had no clue what I would encounter in the eight months that I was there. I didn’t know I’d experience a loss in the family, or have a flare of my RSD/CRPS the week before my graduation. I didn’t know the amount of anger, homesickness, and pain that I would have to work through. Looking back, it’s probably good that I didn’t know because I would have turned right back around and made the day-long trek back home.

Every day since June 17, 2010 has been one step farther from the person I was. No longer am I entangled in addiction or bogged down by suicidal thoughts. I do not hide in my bedroom or stay up all night trapped in my mind. Sure, the sad thoughts come on occasion, but I don’t permit them to stay for long, because I know that life is so much better now that I’ve been given a second chance.

As shown in my life, there is hope for everyone out there. No matter what your struggle may be, it’s never too late for a new beginning. It starts with a baby step, a single decision to say, “this is not the end of my story.” From there, anything is possible. Don’t give up, because your sunny days are just around the corner.

Be Prepared

Today was a busy, productive day in my corner of the world. I spent my day preparing–for drama camps, which start in a few weeks, for Father’s Day tomorrow, and just for the future in general. After so many preparations I feel confident going forward, knowing that things are organized and ready to go.

Preparedness is especially important when you have a chronic illness. Our bodies can change rapidly, for the better or worse, and we need to be ready. Having plans in place for emergencies is key. Organizing ahead of time to make sure that you are all set in case you have a flare is crucial to lowering stress and feeling more at ease.

Last summer, I was in the middle of a drama camp when I fell and landed myself in the hospital, unable to move. Now, thankfully I’m not the director for camp or anything, just the administrative assistant, so my accident didn’t cause a huge change in plans. But I was stressed out as I tried to communicate where things were and what needed to still be done, because I hadn’t spent enough time preparing beforehand. Today, in order to prevent that stress from reoccurring (although I’m crossing my fingers and toes and praying that I don’t fall again!), I planned everything out for the next few months.

Whenever I can do something ahead of time, whether that’s food preparation, homework, or checking things off the to-do list, I usually do it. There’s no sense in waiting because we are never know what’s just around the corner.

What are some ways that you stay prepared?

Control

I don’t know about anyone else out there, but I definitely like to be in control. Of my life, my body, my circumstances. If I don’t have a say in something then I feel anxious and unsettled. I like to plan everything and know ahead of time what to expect so that I’m not caught off guard.

When I was younger I had a plan of how I wanted life to turn out. I had huge dreams of being successful and changing the world for the better. I wanted to be sporty, funny, and living happily on the beach. I figured I would get my license at age 16, get straight A’s in school, and attend school dances with my best friends. I was told that I had the power to choose how my life would be, so I dreamed big and created a strategy for how it would all fall into place.

The thing I forgot to add into my plan was the fact that life changes and many things are out of my control. I never planned to have some strange pain problem, I certainly didn’t plan to battle eating disorders and depression. I didn’t plan to spend 4 months across the country, away from my family, at the age of 15, nor did I plan to spend double that in another location when I was 16, again away from the comforts of home. I didn’t plan for my friends to move away or for my loved ones to die. But still, without being on my imagined life story timeline, all those things happened.

Over time I’ve learned that I need to loosen my grip on things. I’ve discovered that I can’t plan when I’m going to have a flare, or when I’ll fall, or when my body is sick. The day I first heard the words “Reflex Sympathetic Dystrophy,” I had to give up control because I didn’t know what to do. When recovering from eating disorders, I had to give up control of pretty much everything. Since I can’t currently drive, I have to give up control of the wheel every time I want to go somewhere. And I certainly can’t control the people around me and what they choose to say or do.

As I try to make a tentative plan for the next few years of my life, I am once again reminded of how quickly things can change. Last year my plan looked so much different-heck, even last month I wasn’t sure what the future might look like. I thought I would be staying here at school, finishing my degree, and maybe somehow squeezing “relearning how to walk” into the mix of events. Now that priorities are changing, the walking goal is moving toward the front of the line and school is up in the air. I know that I won’t be at this institution next year, and I have an idea of where I want to be and what I want to do at this time next year, but I am well aware that things can always turn out differently than expected.

So, for now, I’m making a penciled-in schedule for the coming months but holding my hands open and letting go of control. It’s so freeing to give up that rigidness and see what happens. Because really, even the best laid plans fail, so sometimes we just have to go with what life throws at us, taking it one step at a time.