Inside Invisible Illness

Our minds think in black and white.  (Or at least mine does.)  Either you believe you can or you believe you can’t.  Whichever you believe, it’s the mind that gets in the way of success.  At this time in my journey, my mind kept focusing on an inspirational quote by Jesse Jackson.  Oftentimes, I would refer to this when training for a marathon.  Of course, that wasn’t why my mind was focusing on it at this time.  “If you fall behind, run faster.  Never give up, never surrender, and rise up against the odds.”  At this time, my mind wasn’t focused on the second part.  I was stuck on the first part, specifically, run faster.

My doctor’s appointment went as it normally did.  The anxiety I had about appointments kept me awake the night before.  My head was filled with all the questions I knew I’d be asked.  How are you feeling?  What is your pain level? How’s work going?  How is therapy?  What has your average pain level been?  How’s walking?  Where does it hurt? When do you hurt the most?  (I really could be the doctor at this point!)  I knew if I cried, he would say I was too emotional.  But, I was scared and worried about what he would say regarding a possible surgery and school.  Surgery could make the CRPS worse, and I couldn’t fathom what that would feel like as I thought my pain was already the worst it could be.

The doctor felt I was making good progress with desensitizing my ankle.  He could tell being back at school, although tough some days, was helping me emotionally.  He was very impressed with Grain Valley SERC Physical Therapy and their detailed notes as well as the different strategies they were using to help strengthen my tendon and treat CRPS.  However, he still didn’t believe surgery would be a good option at this time.  I was relieved.  I was frustrated.  The thought of tendon repair surgery gave me whip lash.  On one hand, maybe that would make all my pain go away.  On the other hand, the thought of someone cutting into my CRPS foot made my foot burn like a 9 alarm fire. (Maybe not as much of a hyperbole as a 10 alarm fire.)

Nonetheless, he wanted to do another cortisone injection to see if it would continue decreasing my sensitivity and relieve some of the pain.  After the injection, he talked to me about the next three weeks.  He wanted me to continue with physical therapy and pool therapy and he added one more hour a day to my school day.  That meant, I would be at school for three hours.  Here’s where the earlier quote comes in.  My mind was saying I was falling behind, so I needed to run faster.  Get back to full days and go, go, go like I normally did.  But the doctor and my body were saying wait a minute, you aren’t ready to “run” just yet.

I had to believe what he was saying was what was best for me.  I just had to.  At least I had a plan for the next three weeks.  Three hours would be better than two, and I had been handling the two hours pretty well.  But, keeping up was getting harder and harder.  Falling behind with running the classroom, learning all the new things I’d missed out on earlier in the year, and activities at school.  Falling behind with no way to run and catch up. But then again, it was one more hour. I had to focus on that.  At least I would be back at school!  And since administration and coworkers were making it an easy transition, I realized I had a lot to be happy about.

I was excited to share the news about adding merely one more hour to my day.  Although I still had pain, I knew with the things that were in place at school I could handle it.  Three more hours with my students meant more happiness for me.  Spending more time with them, after all, would be amazing.  The next three weeks brought drastic changes.  I found myself succumbing to the race and feeling even more behind than before.  I tried harder and harder to keep up and “run faster,” but it wasn’t working.  I couldn’t do the things I was used to doing as a teacher.  Each day I left, students would look at me with yearning in their eyes.  Who was I kidding?  Myself!  With each day, my stress level went up.  I’d arrive at school ready to take on the day, and leave feeling defeated and overwhelmed.

Consequently, my pain levels went up, and I had a harder time managing them.  How could that be?  Going back to school was the prize I had my eyes on for such a long time.  And I was back.  What was happening?  You see, maybe going back wasn’t God’s plan after all?  Maybe it was?  The one thing I knew for sure was I wanted to be at school.  My four walls at home might be missing me, but I wasn’t missing them.  Of course, my plan to keep my eye on the prize didn’t falter, but sometimes plans fall apart no matter how hard you try.

The night before my first two hour day was long.  I couldn’t contain my excitement.  Most of the night was filled with tossing, turning, and anticipation of what the next day would bring. Sleep didn’t come easy because of this excitement and my pain level.  But that didn’t matter because I was going back to school in the morning.  I decided that being at school for two hours a day would be perfect to help me get back into the swing of things.  My mind whipped back and forth between worry (Would the kids even remember me?) and comfort (I was going back to my island!). It had been a long time since I’d socialized, felt a sense of purpose, and left the house every day. Surely having those things back would be what I needed to start feeling better and more like myself.

Morning finally arrived. I’d made it through the night and was ready to take on the day.  Learning Island here I come!  I’d never been more excited to “get ready” for school. I was even excited about fixing my hair and putting “normal” clothes on.  This might be shocking to some of you, but I actually put on makeup!  Makeup!!  My days of wearing a hat and sweats were going to be behind me.  (See, I was thinking positively!) Although tired and in pain, this was going to be an amazing day.  I had my ibuprofen, Tylenol and other strategies ready; I hoped my class would be ready for me.

As I pulled up to the school, my body was overwhelmed with emotions.  This was actually happening.  I was feeling like a human again.  Tears of joy filled my eyes as I reminded myself how blessed I was.  Administration and coworkers were great with helping me transition back into the classroom. Quite honestly, it was an incredibly smooth first few weeks. I was lucky enough to work my two hours in the morning which, for the most part, was when my pain level was lower.  I lit up when I saw my friends saying hello.  The moment I saw my students’ faces and their smiles, I couldn’t help but light up even more. My relentless smiling had my face burning with happiness.  You know the feeling when you are overcome with joyful emotions?  That’s what it felt like.  Plus, my students remembered me.  🙂  That would make anyone smile!

Throughout the morning while in the hall and classroom, I heard kids say things like: “That’s the teacher who got tripped during a kickball game.  I know who tripped you. I bet you’ll never play kickball again.  (They got that right!) You don’t have a broken leg anymore? Mrs. Griesinger, I thought you left forever. Why haven’t you been at school? Yay, you’re finally back!”  I loved their enthusiasm and their thinking.   By the way, no one actually tripped me; I fell on my own.  But it makes the story sound better, right?  😉 The kids were innocent.  They had no idea what I’d been through or what I was experiencing now.  After all, by this time I had an invisible illness.  They couldn’t see the CRPS or my torn tendon. If it’s hard for adults to see past that, just think how hard it is for kids!

Once settled, I shared how I was feeling and reminded students about some of my triggers.  Noises, weather, sitting too long, standing too long, etc.  They were absolutely incredible.  They knew my foot felt best propped on a crate when I was sitting and each time I’d sit down, one would rush to bring one to me.  What an amazing feeling it was to be back on our island and in the school with my peers.  Settling in during the first few weeks was easy.  Some days my pain level was higher than others, but a plan was in place in the event I needed to lay down and try to ease the pain.

I was still going to physical therapy three times a week.  Some days I would come home with extremely intense pain while other days it would be more manageable. I wasn’t “in charge” of the classroom at this point, so my stress level was manageable.  Administration was great with allowing me breaks as needed and slowly transitioning me into my teacher role.  Aside from the pain, the first several weeks went great.  I was trying my hardest to keep my mind focused on the positive.  Being at school lifted my spirits and although it didn’t eliminate my pain, I was feeling better emotionally.  I knew my next doctor appointment was coming soon, so I was anxious to find out what he would to say.  As always, that brought on stress and sent my mind to the dark side.  But this time, I knew I’d be ready for his report because I was back at school where I thought I should be!

As I sit here tonight writing this post, my heart is still heavy.  Heavy with emotions of anger, frustration, and sadness.  This time it’s not because of my pain journey.  That’s nothing compared to what certain school families have had to endure this past week as well as over the last several years.  Losing a loved one at a school.  A place where it’s supposed to be safe.  Once again, I’ve found myself speechless.

I’m far from being political.  I don’t know a thing about guns.  I don’t know much about policy and laws that are in place in individual states.   When it comes to arguments, I’m like a Switzerland. I don’t take sides unless I’ve researched and know something about the topic or if I’ve had personal experience with it.  I do not believe I can argue or write about things I know nothing about.

Right now, my mind is confused, muddled.  I hate the bickering back and forth about what needs to be done or who or what causes these tragedies.  It’s exhausting.  I’m a realist, though. I realize something needs to be done.  I’m just not sure what that something is.  I do; however, believe the negative dialogue of mental illness is a huge issue in our society.  You see, mental illness is just as much an invisible illness as CRPS, fibromyalgia, arthritis, diabetes, chronic pain, etc.  It’s real.  You don’t choose it.  It chooses you.  It’s not picky.  It doesn’t discriminate.  Some only experience minor effects of this illness.  Others more severe.  Either way, it can alter one’s mind, mood, and behavior.

Mental illness shouldn’t be a negative thing.  Yet some talk about it as if only the mentally ill are capable of doing horrific things.  That’s just not true.  One can have a mental illness and live a perfectly normal, non-violent life.  Not everyone walking around in our society with a mental illness has that much anger and rage.  Honestly, we probably all know and love someone with some form of mental illness. There are a number of things that can cause a person to develop mental health issues.  Genetics, environment, a chronic illness, cancer, CRPS, or the loss of a loved one.  The list could go on and on.  As I mentioned before, it’s not prejudiced against anyone.

My point is, if we as a society continue giving mental illness such a negative connotation, we can’t expect change.  We have to talk about it.  We need to identify it so we can help people.  Like many other diseases, having a mental illness sucks. We must continue researching and discovering new treatments that work for all different types of people.  Until we believe it is socially acceptable to talk about it, we aren’t going to be able to move forward.  Having a mental illness is NOT a bad thing.  It’s treatable and one shouldn’t be ashamed to say they have been impacted by this type of illness.

Finally, I pray for all who are suffering from a mental illness.  I pray they know they aren’t alone and that they matter.  I pray for their families.  That they know how to get their loved ones help.  I pray for our society to change the narrative of mental illness and to speak of it like we would a broken arm or leg.  If we continue saying only “bad” people have mental illness, we are setting our society up for failure.  No one will want to talk about it, everyone will avoid those who have been labeled with it, and we will continue losing loved ones because of what this horrible illness can do.

As Aristotle once said, “It is during our darkest moments that we must focus to see the light.”  For me, the months leading up to March 2017 were filled with thoughts of anger, sadness, and guilt!  I was angry about my pain.  (Seriously, MAD!)  I was sad because I didn’t feel like my normal self.  I felt guilty because I wasn’t at school and wasn’t doing the things I wanted to for my family. But in that darkness, I couldn’t let myself lose sight of the light.  I held onto the hope that there, indeed, was light at the end of this journey. Each day I attended PT and proved to myself I was getting stronger. This helped me keep my eye on the prize.  Getting back to school!

Here’s something to ponder.  Does it seem funny to anyone that my prize was getting back to school and not to start feeling better?  At this point in my life, I wanted to believe I could work through the pain.  After all, isn’t that what we’ve all been taught?  As a runner, that’s what I believed.  Once you’ve reached the “wall,” just keep going and work through the pain.  As a teacher, if you just pushed through, you’d be fine, right? I really didn’t understand why the pain from CRPS was taking over my body, but I still believed I could work through it if I just got back to school.

Good news is I made it through February 2017! Working hard at PT while keeping focused on a possible surgery and my return to work kept me somewhat busy.  (For me anyway!)  The last day of February arrived and so did my appointment.  I didn’t have any control over the doctor or his decisions, and that made me nervous.  (You’ve heard that before!)  I was honest with the doctor in regards to my pain.  Some days were bad and there were others that weren’t as bad.  My triggers still caused an increase in burning/achy pain, but I felt stronger. Unfortunately, the strength didn’t really bring down the pain.  The sensitivity in my foot/ankle was, however, getting better.

The doctor was pleased with the decrease in my sensitivity but felt my nerves were still too aggravated to consider surgery.  He decided to give me a cortisone shot to calm my nerves and wanted me to continue with PT 3 times a week. He then said…wait for it…wait for it…“You can return to work.”  WOOHOO   I was going back to work and was in seventh heaven if only for a moment.  The next words he said came out slowly and softly and hit me like a ton of bricks. “I’m going to release you to work TWO hours a day for the next three weeks.”  Now that was a new one for me.  A teacher working only two hours a day when the school day is over seven.  How in the world would that even work?  It took me quite a while to wrap my head around it. Even to this day, I struggle with how that is even possible.

Nonetheless, it was something.  Maybe it was just the little bit of light I needed to continue pushing through.  Maybe there was a more significant reason I was only given two hours.  God knew what he was doing.  I see that now.  But at the time, it made no sense to me.  The plan (you know I love that) was for me to start work on March 1^st.  I had the rest of the day to make the phone calls I needed and mentally and physically prepare for my return.  Even if for only two hours, I was going to make the best of it.  I couldn’t wait to see the kids and create a plan of action with administration.  By the end of that day, I was buzzing about my return.  Happiness took over my heart while worry took over my mind.

This was, after all, what I wanted.  It was my end in mind.  To return to school.  To be with my students on our island! You know how minds can be, though.  They can take an exciting moment and turn it into a tragic dilemma.  At least that’s what mine does.  How would this work?  What were people going to say?  What would my students say?  Why do I let the dark thoughts defeat my happiness?  I should have been proud of all the work I had done to get stronger and how I had been at home taking care of myself.  In reality, though, I was still in pain.  I worked to get my mind focused on the positive.  Surely going back to school would bring more joy to my life.  Getting me out of the house, being around my peers and my students would be better for me anyway!  I knew I could do it.  I, at least, had to try.  That evening I went to bed feeling more excited than I had been in a long, long time.  The next day couldn’t come soon enough.  It was happening.

I WAS GOING BACK TO SCHOOL!

There are several things that play a part in one’s healing process.  Rest, medication, and physical therapy are usually the best while recovering from an injury.  Rest, medication, and physical therapy are also usually best when dealing with chronic pain.  Unfortunately, these things don’t always work the way they are supposed to work.  Take, for example, medication.  (I told you there’d be more on this topic at a later time, so here it is!)  Medication can be good and oftentimes can help people in the recovery and healing process.  In regards to chronic pain, it can also be incredibly beneficial.  Despite the many benefits; however, have you ever taken a look at the long list of “things to know” on your prescription paper?  (If you can even read it.  The print is usually so little, even with a magnifying glass and flashlight I can barely see the words.) I’ve never really paid any attention to this list before.  That is, until I fell, broke my leg, developed CRPS, and tore a tendon.

Before my famous kickball incident, I took very little medicine.  It wasn’t necessarily because I didn’t want to take any.  Medicine has always had an adverse effect on me.  Ibuprofen and Tylenol upset my stomach.  Antibiotics did the same.  Not to mention the canker sores I would develop in my mouth if I took too many NSAIDS.  Cold medicines made me jittery. (Think about that for a minute.  The “old” Stephanie jittery.  As if I didn’t already have enough energy!) Even through marathon training, I would use very little, if any, to help with inflammation.  Medicine wasn’t something I would quickly turn to for pain relief and recovery.  Quite honestly, aside from being a mom, I’ve never had any type of surgery or problems overcoming pain and/or recovering/healing.  What I’ve experienced on this journey has been all new to me and my family.

From the moment I left the emergency room until now, I’ve been given over 10 different types of medication.  Each of them with their own set of side effects.  These medications were to help with pain, nerves, anxiety, and nausea.  I didn’t know there were that many types of pain medication until I fell. Don’t get me wrong, I was thankful for these meds at first.  Thankful the doctor recognized I needed them, yet concerned about being on so many at one time. Some helped and others did not.  The problem wasn’t they weren’t helping; it was they were causing serious side effects.  While we all know my situation isn’t normal, you’ve probably already discovered I’m not normal either.  The doctor would typically say, “This will make you feel so much better and there aren’t many side effects to be worried about.”  So, I’d start taking the medicine and within days, I’d start feeling different.  And not in a good way.

Pain medicine is crucial.  (It makes me sad with the opioid crisis, those who need it the most may not be able to get it.)  Most people with chronic pain need it and don’t have any adverse side effects.  I, on the other hand, have adverse side effects.  Can you say nauseous? Can you say mind altering?  Can you say oops I didn’t mean to order that on Amazon?  I think my kids got a kick out of the reaction I had when I first took a pain pill.  Let’s just say there is a reason I don’t drink!  Regardless, I needed something to help me manage pain.  The doctors tried all different types and we discovered, I would just have to live with the side effects if I wanted a little bit of pain relief.  Although I didn’t like that answer, I did and still do take one when needed.  Even if it alters my mind and makes me feel bad in other ways. Other than that, I rely on Ibuprofen and Tylenol to get me through the day.  A lot of it! At least those don’t make me crazy. (I hope my family would agree with that!)

Similarly, have you ever watched a medication commercial?  I never really paid attention to the side effects they mention because I’d never needed medicine before.  Now that’s all I hear when, on occasion, I have to watch a commercial!  (Love me some Netflix and Hulu!)  Within a few days after starting a nerve medication, I would start feeling different.  Sadness would take over and it was as if I couldn’t control my emotions.  I felt like I was being controlled by the Capital of Panem in The Hunger Games.  Like someone had injected a computer chip in me and turned the cry/emotional knob to high!  Tears would come at random times, and I’d break down crying about my pain or anything, really.  I hated that feeling.  Still do. The nerve medicine was controlling my mind and there was nothing I could do about it.  When my leg/ankle/pain management doctor would see me, they’d suggest anxiety medicine to fix that problem.  WHAT???  At one time, I was on so many medicines, I would get satisfaction from alphabetizing them.  I could go on, but for some reason, I think you get my point

You see, medicine is poison to my mind and body.  I know I can’t go without some of it, but I can at least try things that won’t alter more of me. I’ve spent a great deal of time these last 21 months researching and learning new things about natural things I can try.  There are many things out there that I’m trying, but I still haven’t found the “golden ticket” yet.  Thanks to a few CRPS Facebook Support Groups, I’ve been lucky enough to hear about new things and procedures to help.  CRPS warriors stick together.  And I’ll keep searching and researching to find things that will help me and my mind without the harsh side effects of my medication.  The teacher in me loves the research.  The patience in me is getting thin.  The medicine in me is making me crazy.  My faith, though, is getting me through.  It’s what reminds me to not be scared of this awful disease!  Next post is about March 2017.  Will I get to go back to work?  Will I be given more meds?  Will my pain magically disappear?  Maybe, maybe not??

**This is my opinion only.  Please consult your medical professional before making a decision about taking any medication. **

2017 arrived and I just knew it was going to be my year. I was anxious to see the orthopedic ankle doctor to find out what his plan would be for my torn tendon.  Hopefully, he would know about CRPS and how to “fix” a tendon without getting close to my nerves.  How would that even be possible?  Who was I kidding?  I’m not a doctor, but I do know every part of your body has nerves, right? Have you heard the expression, “You get on my nerves?” Don’t be jealous!  I can now use that phrase both literally and figuratively.  Doctors (most of them) got on my nerves (figuratively) and so did loud noises, someone touching my left side, and weather changes (literally). In my mind, it’s like I was ambidextrous.  Ok, so maybe that’s a bit far fetched. Honestly, though, I was just trying to hang onto anything that might be positive about my situation.

By the end of January, I’d had a few more sympathetic nerve blocks, revisited another pain doctor and finally an appointment with an ankle doctor was scheduled.  January 31st to be exact.  He explained to me and Steve that I had a slight tear in my peroneal brevis tendon. He acknowledged my CRPS pain and was honest and up front about not knowing a lot about it.  (The good news is he’d at least heard of it!) However, he did know doing surgery at that time would not be good as my nerves were immensely inflamed and burning! I thought to myself, “Wow, this doctor wasn’t getting on my nerves. But the thought of him touching my ankle was!” After examining my ankle, he talked to us about his plan.  (You know where I’m going with this, don’t you?). Hooray for a plan!

Since my nerves were extremely inflamed by CRPS, he wanted to wait awhile before considering surgery.  He sent orders for me to start physical therapy at the greatest place EVER!  Grain Valley SERC Physical Therapy (Again, I promise I’m not getting paid to say that!) Additionally, he wanted to start me on new medications.  (Ugh, in my eyes, medicines are poison, but more on that later!)  He went onto explain that MRI’s sometimes don’t always truly reflect what is going on in the ankle as there is something called the “magic angle.”  He suggested we go home and Google it.  OMG…now the doctor was telling me to Google something.  Seriously, though, I could have my MD by now!  Stephanie Griesinger, MD-certified by Google.  Maybe that will end up being a part of my journey!

The next words I heard were words I had heard far too often throughout the previous 8 months. “I want you off work until the end of February.  We will then see how you are doing and determine the next plan of action.”  I knew it was coming, but it still didn’t make the words less heart wrenching.  Hearing this news over and over again didn’t make it any easier either. As if the pain from CRPS and a torn tendon weren’t enough, admitting I wasn’t able to go back to work and do what I love was hard.  It was the New Year, after all.  Nonetheless, I left the appointment with a plan.  I would go to therapy three days a week for the next four weeks.  I would make my new “check off” calendar and try to stay positive.  And although I didn’t want to, I would take the medicine as prescribed.  In the back of my mind, I was thinking and hoping that repairing my torn tendon would make everything go away.  If I worked hard at physical therapy and did all these things, surely some good would come out of it!

Through the month of February, I attended every single physical therapy session. The staff at SERC became my family.  I had been to more physical therapy in the last 8 months than I had been in my entire life.  (That says something as a runner/athlete. Looks like I’m now paying for all those years without having a serious injury!) They were patient, compassionate and above all, they recognized how much pain I was in and they understood how to treat it.  Oftentimes, doing research about CRPS after hours to come up with a treatment plan. They “understood me” and knew that movement was something I needed.  Up until this time, I was told not to do anything active if it brought on burning.  My physical therapist knew I needed to release adrenaline, so she encouraged me to get in the pool and walk slowly forward and back.

Thankfully, that was just what I needed to release adrenaline and start building strength in my foot and ankle.  And it didn’t bring on more pain! I didn’t do much.  But walking forward and back for 5 or 10 minutes was more than I had done for a long, long time.  I looked forward to my pool time as well as going to PT 3 times a week. Although I still had days filled with sadness, I was having more and more days filled with happy thoughts and people (at PT). I especially enjoyed that part as I hadn’t “socialized” for several months.  That sure does make a difference, especially when you socialize with people who don’t get on your nerves.  😉 My countdown to the end of February was on and even though I was feeling better emotionally, I was still burning and hurting.  As February 28th got closer and closer, I knew I would need to brace myself for what might be more time off, a scheduled surgery, different medication, different treatment plan, or simply nothing!

God had gotten me this far, and I knew He would continue moving me forward.  I just had to trust, believe and be still.  Of course, my anxiousness increased as my next appointment slowly approached!

December came and with it came the approval of an MRI.  WAHOO!!  Finally, it was on the calendar.  Of course, I took the first available appointment even if it meant driving 30 minutes to get there.  Some might say MRI’s can be stressful, especially if you are claustrophobic.  Any guess who might be that way?  Yep, it’s me!  The good news was my entire body didn’t have to go in the tube, so an MRI of an ankle/foot wouldn’t be too bad.  While kids all around the world were anxiously awaiting Santa’s arrival, I was anxiously awaiting my appointment.  Checking off each day until it arrived.

Check…  Check…  Check… I spent the next several days trying to manage my pain and waiting patiently.  The appointment was on a Saturday, which meant a radiologist wouldn’t be able to read and give me the results the same day.  Bummer!  (I don’t think they are supposed to do that anyway, but when I had the MRI of my leg, I got a printout of my results.) This meant I’d have to wait a few more days to find out what, if anything, was wrong.  What’s a few more days anyway? Ha! While waiting, I had more time to think.  Think about what else could be wrong.  Seriously, I’d been in the same amount of pain for 6½ months without much improvement.  I knew I had CRPS, so I wasn’t really sure what else could be wrong.  Although, if you remember, Google had diagnosed me with several things.  (Note to self, DO NOT use Google to diagnose yourself.)  It’s dangerous.  It’s scary.  And it will lead you to believe you have every disease and/or disorder the internet says you could have.

MRI day came and went.  The anticipation of the results was overwhelming.  I couldn’t abolish the feeling of “what if.”  (That’s almost as bad as a Google diagnosis!) What if there was something else wrong?  What if there wasn’t something else wrong?  What if?  What if? Either way, I wasn’t really sure what it would mean.  The next few days crept by as slow as dial up in the country.  Strangely enough, it took me dialing the number to the doctor to get my results.  And boy was I blown away!  I would even go as far as saying I was speechless, again!

In addition to my CRPS diagnosis, there was, indeed, something else wrong with my ankle.  I wasn’t crazy after all. I had a torn tendon.  A TORN TENDON.  My MRI said WHAT?  Let me repeat that again to give it more emphasis.  I had a torn tendon and had been walking around on it for 6 ½ months.  Aha…there it was.  Another diagnosis.  But what did it mean?  How would they fix a tendon without flaring up the CRPS?  Was it even repairable?  There went my mind again.  Although I didn’t know the answers to those questions yet, something deep inside me knew I’d be seeing yet another doctor sometime in the near or far future.  Do you recall me saying I didn’t have any control over that?

By the end of December, I was certain about a few things.  My foot/ankle and leg still burned like a raging inferno.  My foot/ankle felt like an ice block, aching to the bone.  I’d have to wait a while to get approval and an appointment set for an orthopedic ankle doctor.  Just because I had a torn tendon, didn’t mean my pain journey and CRPS would be over.  And finally, you shouldn’t do any on-line Christmas shopping while taking pain medication.  That’s not good.  Not good at all!  Trust me!!! (Consider that a free PSA!)

Most importantly, I was certain that God would be with me no matter which way my journey would take me. That He would continue to help me through. And He would help lift me up on days I couldn’t lift myself.

P.S.  If you have any other word I can use besides waiting, I’d be happy to use it in my next blog post.  LOL

As Frank Sinatra says, “Start spreading the news.” Sammi and I had plans to go to New York, and we were beyond excited.  She was going with her high school band to march in the Macy’s Thanksgiving Day parade. (Pretty cool, huh!)  The plans were for me to go and watch her march and see the city.  Unfortunately, the timing just wasn’t right. November 2016 came and with it so did more appointments, phone calls, PRP injections and off work notices.  Although I didn’t like it, I was starting to get used to the answer of, “You’ll need to be off work for two more weeks, then we will reassess.”

My pain levels were staying the same, and I was being as patient as possible waiting for the PRP to start working.  (Didn’t I tell you I was in that infamous “waiting” place for a long time?)  I continued to be off work, but stopped being involved with things at school so I could work on healing. This brought my stress level down, BUT I still didn’t have a plan. The doctor was in control, and I had no idea when I would be better and well enough to go back to school.  I was starting to loath the word CONTROL.  (Even though I like being in control!)  I didn’t have control which meant the doctor and the powers that be were in charge, managing me and my pain.  However, I did have control of how I took care of myself.  I hung on to that as it made me feel like I had some control and a plan.

As the month progressed, Steve and I continued having a gut feeling that something else was wrong.  The pain I was experiencing was in my leg and foot, but mostly in my foot.  The burning spread up my entire left side.  It just didn’t make sense to us that I had more pain in my foot because my broken leg was what caused the CRPS, or so they say.  We fought and fought for more tests asking for an x-ray or MRI of my foot/ankle.  After 6 months of researching, questioning, begging, we finally convinced the doctor to do some further testing.  He ordered an x-ray of my left ankle.  We were elated.  Even if it didn’t show anything, at least we could rule out the possibility of something else being wrong.

Once the doctor received my x-ray results he called and said he wanted further testing.  There was something on the x-ray that concerned him and he wanted to rule out a few things.  To say we were more hopeful than ever is an understatement.  Finally, someone was listening to us and soon we would know if something else was wrong.  Although we were on cloud nine, Steve and I had a hard “personal” decision to make.  I was still in pain and was scheduled for more testing.  The New York trip Sammi and I had scheduled was just a week away. The excitement for the trip was building, BUT I knew there was no way I could go and enjoy myself, let alone keep up with everyone.  Thankfully we were able to transfer my ticket so Steve could go with Sammi.  As hard as this decision was to make, it worked out for the best.

Now take a moment to picture this…small town, laid back Steve in a big, fast paced city!  He’s more of a camp in the wilderness type guy.  But he took one for the team, and they had the time of their lives!  Although I was devastated about not being able to go, I wouldn’t change that decision for anything.  Steve and Sammi had an amazing time, and Zack and I enjoyed the pictures from home.  We had the “small town blues,” while theirs was “melting away!”  Zack took me to my appointments and took care of me while they were in the big city. I patiently waited for the MRI to be approved and scheduled.  Once again, I was waiting.  And waiting.  And waiting. Maybe I should have called my blog, “Waiting for…,” you can fill in the blank!

One might say I was getting pretty good at it. But I wasn’t.  At least we knew there might be something else going on with my foot.  Not even sure what that would mean.  But it was something.  When Steve and Sammi returned from “being a part of it,” I made a plan. I would continue working on getting better so that I, too, could “be a part of it.”  That would be my end in mind! I can’t wait until I can say, “I’m leaving today! New York, New York here I come!”

And it wasn’t in love. By this time in my journey, I was falling into a deep, dark pit of despair. It was real. I couldn’t shake the feeling of how disappointed people were in me. How disappointed I was in myself. Or how many people I was letting down. Or how I thought I was failing. Let’s be real, when a school and classroom need you there, it’s hard to manage that from home, let alone in the classroom while in pain. I tried, I really did. But it proved to be too much.

I can actually say writing this post has been the toughest, by far. It’s taken a lot of time for me to admit and realize just how large and deep my pit of despair was. My hope is it will help others understand and possibly open dialogue about invisible illness. During the next several weeks, I had more and more doctor visits. Each bringing the news of “you’ll need to be off work for another 2 weeks.” I dreaded each appointment as I knew I’d hear the same thing.  And, quite honestly, I was exhausted from talking about my pain. My pain level. When it was worse. When it was better, etc. Appointments brought stress and feelings of failure again and again. They stressed me out because I couldn’t say I was better. They gave me feelings of failure because my pain wasn’t going away.  Remember, the “old” Stephanie always bounced back. I found myself digging deeper and deeper into my pit.

Leaving my home was becoming a thing of the past. I became a recluse hiding out in fear of someone seeing me. #judgefreeeyes weren’t being used by others and it hurt. The pain was deep. It didn’t burn, ache, or swell.  This pain was like someone taking an ice pick and chipping away at my heart, breaking it into pieces. The people who knew me well, knew I couldn’t control my CRPS pain, the decision to be off work, and/or my treatment plan. They knew part of healing was getting up and moving. They knew that getting me out of the house was part of the healing process, too. But I seldom went. And if I did, it brought on more stress and burning. They also knew there had to be something else going on besides CRPS.  Looking back, it was crazy for me to feel like that. But I did. Why did it matter so much what other people thought?  Why did I give others consent to make me feel bad, guilty?

I had CRPS. And now I was depressed. Wait! WHAT? Happy go lucky Stephanie who loves to sing and dance and have fun, depressed? Yep, I said it! It’s not a dirty word. It doesn’t make me any different from anyone else. It’s another invisible illness we regularly overlook and often there’s a negative connotation to it. How sad is that? Mental illness is real. And it’s not any different than a broken leg, strep throat or CRPS because IT IS an illness. (More on that in a later post.) People can be depressed for many reasons. Men, women, children are all susceptible. I swear my dog, Lizzy, is depressed when Sammi is gone for long periods of time. Never before in my life had I been in such pain or fallen into a deep pit of despair. I constantly worried about what was going to happen next or what wasn’t going to happen next.

Before my fall, I was a happy person. Somehow living with pain changed that.  When depression sunk in so did the thoughts of never getting better. Having a lot of time on my hands, being in pain all day, letting people down, and not being able to leave the house was setting me up for disaster. (I can honestly say that I’ve shed more tears throughout the last 20 months than I’ve shed in my entire life.) Oh, I’m good at putting on a happy face. (My family knows that.) Each day is a new day, and now more than ever, some days I have to work hard at smiling, thinking positive, and believing in myself. Fighting off the negative thoughts can be hard work, for sure!

The good news is, I am in a better place mentally right now. I’m more hopeful than ever. I have my close friends and family to thank for encouraging me each and every day. I know I’m going to get the “old” Stephanie back. As I mentioned earlier, this post was hard to write. But it will be worth it if it helps just one reader begin dialogue about depression. If you feel this way, reach out. Don’t be ashamed. And, above all, know that you matter!! God sent me on this journey for reasons I’m not sure of yet. But, I know He has great plans for me. Now, I like the sound of that!

Confucius once said, “It doesn’t matter how slowly you go as long as you do not stop.” Just like a marathon or our race through life, moving forward is always a good thing and sometimes finding the will to not give up and stop is tough.  At this time in my journey, I felt my healing was moving rather slowly, and I wasn’t ready to give up or stop.  I wanted the pain to go away and I wanted to get back to school. However, if I’m being honest, I think Confucius may have been a bit “confused.” Because in October of 2016, I decided to move forward slowly and to not stop. I begged the doctor to let me go back to work even though I wasn’t 100% better. In hindsight, that was a bad idea. I really should have stopped!

I had spent the last several weeks doing more and more research on my condition and trying to figure out if something else could be wrong. My foot/ankle still hurt, burned and was hard to walk on. It was still swollen, red and my heel felt frost bite to the bone. I still had burning in my thigh and sometimes up my entire left side. These were all symptoms of CRPS; however, I didn’t understand why I was having such a problem in my foot when supposedly all I had done was broken my leg. Symptoms of CRPS usually begin where you were actually hurt. Wouldn’t that mean I would have more severe pain in my leg than I did? This thought just wouldn’t leave my mind; it just didn’t make sense to me. Man, I sure wish I had the knowledge of a doctor.

I could tell the PRP was working a little bit because I was feeling some relief. That coupled with pain meds and other assorted medications seemed to be getting me through each day. I had good days and bad days. My new normal pain level was a 3 and most days I would shoot up to at least an 8. (Funny story, now when someone asks me how I’m doing, I always give them a number. Makes me feel like an elementary student who is assigned a number at the beginning of the year. J) When at levels of 3 -5, I could manage with just ibuprofen/Tylenol, even though they made me sick to my stomach. The two weeks prior to my doctor’s appointment, I did what I could to stay relaxed, continue my physical therapy on my own, and worked on positive thinking. I just knew this was going to be the end of the journey.  After all, I needed to be back at school and not sitting at home in pain.  I needed to keep moving forward and not stop, like Confucius said.

Appointment day was finally here. The doctor was considering another PRP injection, but he wasn’t married to the idea. I expressed my concern about being away from school and the stress that it caused me and he agreed to let me try going back. I promised him I would be honest with myself and call if my pain levels increased. I spent a week at school with amazing kiddos, but was in pain the entire time. The loud noises in the hallways, cafeteria were overbearing. My stress levels went up. My mind was focused on my pain; therefore, it was difficult to remember little things such as taking attendance. The kids in my classroom were amazing, but I left every night feeling defeated, tired and in excruciating pain. I survived all day with large amounts of ibuprofen and Tylenol. When I returned home, I would take a pain pill, go to bed, and get up the next morning to do it again. I had to try. I had to. WHY isn’t this pain going away? Why can’t I just ignore it? After a long week of this, I knew I had to call the doctor, at least that’s what I promised to do.

Another difficult moment during this journey was calling the doctor about my increased pain. I was, undeniably, in too much pain, and it was getting worse. I’d failed. I’d stopped. I was letting so many people down, including myself. As suspected, my doctor pulled me back off work and wanted to see me every 2-3 weeks to evaluate my progress. Each time he would keep me off work. Truthfully, there was no way I could work anyway, and I knew it.  I just didn’t want to believe it, admit it. My journey started feeling like a game of Monopoly. Never moving out of jail and never ending.  Little did I know I was making a huge mistake when begging to go back to work. Turns out, I was not at the end of my healing marathon. God had a different plan. I guess I should have remembered another quote from Confucius, “Real knowledge is to know the extent of one’s ignorance.”  In my defense, I don’t think I was ignorant, I just don’t think I’m good at admitting when I need to stop!  (Some might say that is ignorant!) Anyone else have that problem?