Peace from the Pain

It's been a while since I have written on here, and I am happy to say that I simply haven't been thinking about pain much. My back no longer hurts. My foot is nearly perfect again and only hurts when I think about why it hasn't hurt lately. The past 3 months have truly been amazing, and I have been busy just trying to embrace the life I missed so so much.

I can't express to you the relief I have gotten with the release of pain. I actually have time to worry about things other the pain and no longer stress about how I will stand at a social gathering or make the walk to the restaurant to meet my friends. I no longer have to wear tennis shoes every day (although I still love some comfort shoes!). To be honest, I'm scared sometimes of forgetting just how bad the pain was, how it controlled every minute of my life. How I was terrified of the future and terrified of all the things on which I would miss out. I'm scared of forgetting how God answered my prayers. I'm scared of losing the faith that I gained while in my most desperate place of depression. But it's time to stop living scared, and start living the life I have been given back!

What made the pain go away? It all started with one of my daily desperate Internet searches for answers. On a Friday night when I had to miss a dinner with friends because my back couldn't handle an hour sitting at a restaurant, I started Googling chronic back pain (while in my permanent position of laying down). I stumbled upon the blog of a person who read the book "Healing Back Pain" by Dr. John Sarno of NYU. Dr. Sarno has written several books on the mind-body connection and his basic theory is that our minds create pain to distract us from having to deal with other stressful events in our lives.  He refers to this syndrome as Tension Myositis Syndrome (TMS). I was extremely doubtful at first. But then, I started to think about it. One of my favorite things to tell people when they asked about the foot pain was that "at least it distracts me enough that I don't worry about anything else." I always though that at least there was one perk with having pain - the distraction.

After thinking about it, however, I started to realize just how many stressors in my life I had been ignoring. The week my foot pain started, I started a job at a high powered law firm where I felt completely out of place and intimated. I moved to Chicago for the summer away from family and my fiance for the first time, and I got married at the end of that summer. At the time my back pain started, my family was going through a difficult transition and my husband's job announced it was moving several employees. Each of these events likely caused significant stress, but I didn't deal with any of them. My pain took over every aspect of my life.

Initially, I thought the mind-body connection was responsible only for my back pain. Within weeks of starting journaling, and dealing with some of the most complicated past and present stressors in my life, my back pain vanished. Completely. After a few months, I started to wonder if my foot pain could also be related to TMS. In his book, Dr. Sarno discusses a wide variety of pain and disorders that can be caused by repressing emotions and stress, including foot pain, migraines, irritable bowl syndrome, carpal tunnel neck pain, and many more.

Because a huge part of the treatment is accepting that there is nothing structurally wrong with your body, I saw a specialist at Northwestern University Hospital to confirm that my foot pain was also related to TMS. After a detailed analysis, the doctor confirmed that he believed my foot pain was due to TMS. I continued journaling and spoke with other sufferers of TMS. Sure enough, within weeks, I was running again and my foot pain level is minimal. For anyone who suffers from chronic pain, I can't recommend one of Dr. Sarno's books enough.

This will likely be my last post, as I am moving beyond the pain and on to bigger and better things....

To Mayo and Back

          

The past few months have been filled with highs and lows. As for the highs, my foot pain has improved quite a bit. I have been able to walk considerable distances and stand for more than 10 minutes without wanting to scream. At the same time, the pain is still constant and while less intense, it is always there.

Also, for the past sixth months I have been suffering from debilitating back pain. It has been incredibly frustrating for me that as soon as my foot started to improve in the slightest, my back pain further debilitated my life. After a few months of this, I decided that enough was enough and made an appointment with Mayo Clinic (which isn’t as easy as it sounds, it took me 2 years and 4 attempts to get an appointment).

We made the trek up to Minnesota with hopefulness and also nervousness. I knew this was it – Mayo Clinic has the best doctors in the world and the most advanced medical treatment. If these doctors couldn’t help me, then no one could. The experience was truly amazing for several reasons: 1) Mayo Clinic doctors do not have any patient quotas, which means that they can spend as much time as necessary on each patient; 2) there is very little wait time – in 3.5 days, I saw 7 doctors (many more than once) and had more tests done than I can count; 3) instant results – the doctors had results from any test in 10 minutes.

I saw two orthopedic foot/ankle doctors and a neurologist, and they concluded that my remaining foot pain was due to nerve issues. Unfortunately, they did not see any “fix” for this, and it is simply something that I must live with. However, they suggested trying different medications to help with the pain. Currently I am taking Gabapentin. Have any of your suffered nerve complications from your surgery? If so, any luck with Gabapentin or other medicines?

As for my back, I found out that I managed to have a stress fracture in my lower rib without ever knowing it. This led to concern as my foot problems started with a stress fracture as well. It turns out that my bones have low density for my age, which with treatment can be resolved. I am so happy to have found this out now, as who knows how many more times I could have injured myself in the coming years!

The pain is still there and I am still waiting for the day when I can live normally again, and think about anything other than the pain. It’s a daily struggle, but I am so glad to have you all to walk along this path together.

Exercise Envy

One of the most difficult parts of this journey for me has been losing the activities I loved. As mentioned in an earlier post, I am very grateful for discovering swimming, but at the same time, my heart has a small ping every time I pass a runner on the street. Try as I might, I have not found anything that compares to the rush of completing a long run outside. I see other individuals running in the sunshine and I would give anything to be them, for exercise to be as simple as lacing up my shoes again.

Accordingly, over the past two years, I have discovered Facebook envy. It takes only one person's post about their 3 mile run or recent cross fit adventure to strike up my jealous card. I am ashamed to admit that I have hidden many friends' posts from view because I simply couldn't stand to read about their newest fitness endeavors. Instead of being proud of them for getting into shape, I find myself hating their ability to do the things I can't.

It's so easy to spend time focusing on the losses. But if I am honest with myself, there were days when I positively hated running. I would be ½ mile into a long run and not know how I would complete it. It's hard to remember this, as my mind has somewhat glorified running.

I have had several doctors tell me that I will run again. At first, this gave me hope. But now, it is just painful to hear as that point is still not in sight. So for now, I will keep waiting and just be grateful that this year's marathon season has finally ended J.

"Everything Happens for a Reason"

We have all heard this phrase before. It seems to be society's default explanation for an event that happens without any apparent reason. Personally, I believe that we use this phrase to make ourselves feel better. When something bad happens, we want to believe that there is some other inherent good that results.

On several random occasions since my injury, I have been told this phrase by others. For a very long time, it was impossible to see any good that came out of my situation. How can a life of constant pain and inability to do the things I love have any positive effect? In fact, I would get angry when people asked me to remember all of the numerous blessings God has given me. Yes, I have a great husband, supportive family, and a wonderful job. But somehow the pain shifted all of these blessings out of my mind. There was no room for grateful thoughts among the pain.

Recently, I have been searching more for my "reason." Without realizing it, I have subconsciously made several personality changes over the past two years. Before, I lacked empathy for those who suffered. Upon learning that another person suffered from some non-life threatening bodily injury, I would simply dismiss their pain, thinking that it could not possibly be that bad. I was caught up in my own life, my own petty desires and wishes. Everyone else's needs came second.

While I still suffer from these same failings, I have learned the importance of asking others how they are and genuinely caring about the answer. I have learned that each and every person has their own battle, whether it be physical, emotional, or spiritual. More importantly, I have developed a deeper faith with God and have discovered with awe the amazing support that a church community is able to provide. While I often think I would give anything to go back in time and change what happened to my foot, I would hesitate before sacrificing this new appreciation for others and deeper faith.

I will never give up searching for answers and relief for my pain, but if this is the cross that God has given me to bear, then I must bear it the best I can.

The Mental Game of Chronic Pain

During a psychology class in law school (strange combination, I realize), my professor presented a study relating to happiness. She noted that as humans we have a natural happiness "set-point," meaning that while we experience temporary dips and boosts in happiness levels after certain events (job promotion, marriage, divorce), we naturally return to this set point after a surprising short period of time. At the same time, there are three things that have been found to cause a permanent decrease in happiness: death of a spouse, being fired from a job (even after obtaining a new job), and chronic pain. At the time, this meant little to me as I had never experienced any of those events.

Everything has changed. Chronic pain is a mentally exhausting and at times crippling experience. Yes, is it difficult to not be able to do the active things I love to do, but it is so much harder to not be able to escape the constant pain. When trying to explain this to someone, I often say that pain is the first thing I think of when I wake up in the morning and the last thing to cross my mind before the sweet freedom of sleep. For those 16 waking hours, I cannot go more than five minutes without thinking about the pain in my foot. Honestly, I cannot remember what I spent my time thinking about before my injury.

The mental effect of this pain is outstanding. I would have never guessed that pain could lead to such sadness and depressive thoughts. I often catch myself falling into the spiral of thinking of things that I would happily give up in exchange for a pain free life. This can also lead to a dangerous path of attempting to "barter" with God for relief.

There is only one thing that I have found to help with the mental anguish of chronic pain and that is to stay as connected as possible with my family and friends. Relationships and social activities provide an invaluable distraction from the pain. At the same time, it is sometimes incredibly difficult to make myself get out of the house to do these same activities that I know will improve my mood. Sometimes, I am just too overwhelmed with the thought of having to walk from the parking spot to the restaurant. But afterwards, I am always a happier person and have learned to just force myself to get out there.

Those dreaded words: "Give it More Time"

There is one phrase that I have heard in doctors' offices more than any other phrase: "Give it more time." This is also the single most frustrating thing to hear as a patient in pain. After each of my surgeries, the doctors were hopeful that I would have a full recovery, or at least that the pain would be reduced. Unfortunately, that was never the case. I understand that only with time and physical therapy does the full effect of a successful surgery become known. At the same time, when my pain level remains exactly the same as it was before surgery, it is hard to believe that more time will help at all.

During these times of waiting, I realize just how much this situation is out of my hands. I can research my condition for hours, do each and every one of my physical therapy exercises, and make dozens of phone calls to doctors for second opinions, but that is the limit. Most of my time is spent waiting for the next appointment, waiting for something to change, waiting to hear a new diagnosis that might have been my problem all along.

Currently, I am three months post-op from my nerve release surgery. Again, my foot feels exactly the same as it did before surgery. During a post-op appointment today, the surgeon asked me to give it more time. This is incredibly frustrating as, even though I know that my foot should not have any more surgeries done on it in the near future, I want to do something, anything to help. So I will be traveling to three specialists in Chicago over the next two weeks and hope that one of them will give some indication of a next step. Honestly, I just hope to hear anything other than "give it more time."

Staying Active with Foot Pain

One of the biggest challenges for individuals with tarsal coalition is maintaining a healthy lifestyle. Many of us were extremely active prior to our diagnosis or injury. For me, I loved to run. Running was my escape and a healthy way to get out my daily aggressions. One of the hardest parts of my pain has been my inability to truly exercise. Since my initial injury, I have been able to bike on a very limited basis. I was never a big biker, and it has especially difficult because, due to pain, I can only bike for a short period of time with little resistance. In reality, I went from being an extremely active person to having to use a wheelchair at the grocery store.

The lack of activity has been a big struggle for me. Not only do I feel blah and lazy most of the time, but I also lost my best method of stress relief. At the time in my life when my stress levels are highest (also due to the medical issues), I lost my only known method of dealing with stress.

Recently, I have discovered swimming. It has been the best thing that has happened to me since the injury. Not only am I able to be active and stay healthy, but I also have noticed that swimming is the only time of the day when I really do not feel pain in my foot. I have heard that pools have healing powers and now I must agree.

Readers, what have you done to stay active? What do you miss most from your former life?

Tarsal Coalition and Other Joints

For most people suffering from tarsal coalition, the pain starts in the feet. For me, I first experienced pain while training for a long distance run.  For several weeks when I would run, I had a slight sharp pain in my ankle that was only present for short periods of time while running. Because the pain was so slight and of such short duration, I actually would forget about it as soon as the run was over.

Then one day, during a short 3 mile run, I had a very sharp, severe pain in my ankle. As mentioned in an earlier blog post, I limped around on my foot for a few days before deciding that it probably wouldn't go away with just a simple ace bandage.

Since then, I think I am rare in that I have pain at all times. Even when I am resting, I have a constant ache through my entire foot. I would appreciate comments on this, but it seems that most people with tarsal coalitions experience pain while being active (walking, standing, exercising). For me, standing in place is the absolute worst of my pain, but it never leaves me. This is likely due to nerve complications.

It also seems like many people who have tarsal complications often develop pain in other areas of their body due to compensation and improper gait. For me, I have a lot of pain in my left knee (my right foot has much more pain than the left). The doctors think for the most part this is due to compensation and being in and out of a walking boot for 2 years. I recently started physical therapy and was sad (but not surprised) to learn that each of my lower body muscles (leg, hips, glutes, etc.) is very weak.  By strengthening these muscles, I hope to eliminate some of the knee pain.

Walking boots are very helpful, but can lead to other problems.

Today I ask for tips on how to help compensation pain in the knee, hips, back, etc. For me I have found two things that help. First, I have a heel lift in my right shoe (under the orthotic) because my doctor and a chiropractor both determined that I am a bit lopsided (also likely due to compensation). Second, exercises including leg lifts (for the quads) and strengthening exercises for the hips, gluts, and hamstrings can help take the strain off of affected joints.

While on the subject, I would also like to suggest using a golf ball when sitting on the couch or at your desk. Softly roll the golf ball (tennis balls also work) under the arch of your foot for several minutes. It feels great!

Here are my questions for you: Do you have pain in your foot/ankle even when resting? Also, have you experienced pain in other areas of the body? Have you found anything that helps alleviate this pain?

Some exercises I have found helpful (but remember, ask your doctor or physical therapist first!):

Prone Hip Extension

Sidelying Hip Abduction

Straight Leg Raises

Being the Spouse of Someone with Chronic Pain

As a sufferer of chronic pain, I can admit that I sometimes get absorbed in the pain and the suffering. I sometimes forget how much my pain affects those around me. I am extremely lucky to have the most supportive and loving husband who has stood by me in my weakest moments. Although he stays strong, I know that it must hurt him to see me in this much pain.

For other spouses of those who suffer chronic pain, I offer a few suggestions. First, try to understand that we tend to let the pain build up inside us until we reach our bursting point. Unfortunately for you, that means that you often get the blunt of our anger and frustration. I apologize for this, but know that often you have not done anything wrong other than be at the wrong place at the wrong time. Along those lines, we often spend the entire day at work putting on a happy face and pretending like our bodies are not rebelling. This in itself can be exhausting, and sometimes we can barely make it to the car without breaking down into tears.

Additionally, let us do activities that we love, even if they cause us pain. For sufferers of chronic pain, life is all about trade-offs  We are forced to give up many of the things we love, and will often continue to do them, even if it makes the pain worse. Let us do it. I know it seems stupid and counterproductive, but mentally we need it.

As humans, we resist admitting weakness. Learning to ask for help has been one of the hardest (and best learned) lessons for me. That said, even in my moments of deepest sadness, it was very difficult for me to admit that I needed to talk to someone. My husband was the one who would not let it go and urged me to see professional therapy. At some point, the spouse can help their loved one to realize that she needs more help than the spouse can offer.

Sometimes, as hard as it is, you just have to let us breakdown. I know it breaks my husband's heart to see me curled in a ball sobbing on the bathroom floor, but I need those moments. Sometimes I need to throw things, to scream, to punch, and to cry.

Most of all, keep loving us, even as you see us change.

My support system.

The Financial Costs of Tarsal Coalition

I have never been so thankful to have health insurance. Even with insurance, I have spent nearly $10,000 on medical bills alone over the past two years. Not to mention the hundreds of dollars spent on gas, days of work, and non-prescription medication and health aids. One of the hardest parts about spending this much money is the fact that after 3 surgeries, my foot is in no better condition than it was the day before my first doctor visit.

While it is difficult for me to accept the out of pocket expenses, for the most part, the cost of my healthcare makes me increasingly grateful to have health insurance provided through my husband and my employers. I often think about the alternative. What if I didn't have health insurance? I would not be able to pick up the phone and go see the doctor the moment something changes. I would not be able to call expensive specialists to receive second and third and fourth opinions. I would not be able to afford multiple surgeries. Simply put, I would be lost.

Living in Tennis Shoes in the Professional World

Regardless of the event or the attire, I wear athletic tennis shoes every day. Interestingly, one of the first things people say when they find out about this is that they wish they could get away with that. I might have said the same thing a few years ago, but I have to say, it's not as easy as one thinks. First, there are the awkward social events. There is nothing like walking into a formal event with a dress and tennis shoes. People stare, they make joking comments like "nice shoes." For the most part, it is well meaning, but at the same time, it's a hit to my self-confidence.

I am very blessed to have a job with an understanding boss. She lets me wear tennis shoes with my professional clothing and never says a word. It becomes more difficult when I have a professional lunch or happy hour to attend. While it is true that most people could care less over what shoes I am wearing, I feel less confident in such clearly mismatched attire. Adding to this, many of these events involve standing. Networking by nature requires the ability to work the room, which is hard to do when you can't stand for more than 5 minutes.

This is a very small issue in the grand scheme of things, but I can't help but stare longingly into my closet at all of the beautiful shoes I used to wear. I have donated a few of them, but have kept the rest in the hopes that one day I will get to wear them again, if only for an hour.

My graduation shoes - if I was stuck in tennis shoes, they were going to be fun ones!

What I wouldn't do to wear these shoes again!

Tarsal Coalition – The Silent Disability

When we think of disabilities, we think of people in wheelchairs, or people needing a crutch or cane to get around, but I have learned over the past few years that many people out there are suffering from silent disabilities. This includes those suffering from back pain, nerve disorders, and in my case, tarsal coalition. Anyone inflicted with these conditions looks perfectly normal to others. This creates its own challenge, as it makes explaining the situation more difficult.

After each of my surgeries, I had a slight limp for the first few weeks of weight bearing. Inevitably, the limp would gradually go away, and people would make comments such as "you are walking so great" or "glad to see you recovering." These statements were always well intentioned, but acted like another stab to my already unstable emotional state as in each case, my pain level remained the same. People expect that with a foot injury, you have surgery, use crutches for a few weeks, and are back to normal before you know it. I have realized that it is virtually impossible for people to comprehend that there is not a cure for every foot/bone disorder.

Sometimes, I think it's easier to make it through social situations when I use crutches or am in a walking boot. It acts as a signal to others that I am not able to stand on my feet for very long and people actively work to make you more comfortable.  In many ways, being on crutches comes with perks similar to pregnancy J. When I am not using crutches, on the other hand, people give me strange looks when I wear tennis shoes with dress clothes, or sit down when everyone else is standing. Sometimes it is exhausting to explain over and over again that I simply can't stand for more than a few minutes.

At the same time, if there is one thing I have learned over the past two years, it is that people are good and kind. They want to know if you are suffering and want to do whatever little bit they can do to ease the pain. This has taught me to know how to ask for help and when to speak up when I need to sit down. It may be awkward for me, and it may feel like everyone is staring, but in the end, friends and family want us to be as comfortable as possible.

Where Do You Plan on Being in Five Years?

The future is scary. This is not unique to a person suffering from chronic pain, as everyone has their own fears as to what the future might hold. However, as a married woman who hopes to have children in the near future, thoughts about the future are even more intimidating. First, tarsal coalition is a genetic disorder. It is more likely than not that one or all of my children will have this condition. It terrifies me to think that my children may have to go through anything remotely close to the physical and emotional trauma I have experienced. How can I live with myself knowing that I am the one who caused my own child so much pain?

Also concerning, when women get pregnant, their feet swell. Their feet take more of a hit each day simply from the added weight coming with a baby. How can I ask my feet to take on this added pressure? I would likely have to make ice packs a permanent fixture to my feet.  Along the same lines, I recently read a study suggesting that babies are best calmed by being held by an individual walking around. The mere thought of holding a 15 pound child and walking around is enough to send me into panic mode. Then I take into consideration the fact that the child will grow up and will want to run around, or even make a break for the street when a car is approaching. How will I catch the child, if I can't run?

When bringing up these fears, the normal response is: "people have children under all circumstances, think about parents in wheelchairs." Yes, people do adjust. But that doesn't make it any easier or any less scary. So much of what we do in our daily lives involves walking. Add children into that mix, and it's hard to imagine what the pain level would be.

My Life on Tarsal Coalition

I am writing this blog in the hopes of connecting with others who have faced chronic foot pain in their lives, specifically those who deal with the condition of tarsal coalition. Additionally, through my story, I hope to give understanding to those who love someone who is facing this condition.

It has been 699 days since I was last pain free. Before June 1, 2011, I was an extremely active 25-year-old law student. Exercise was my stress relief, and I thrived on running, biking, cardio classes, and virtually anything that got my heart rate pumping. At the time, I was training for my first long distance race, a ½ marathon. I was looking forward to the summer of my life: I had a great summer position with a law firm, was engaged to be married in just a couple of months, and was looking forward to experiencing my first summer away from my hometown, in the big city of Chicago. Then, 3 days before the race, I experienced sharp pains in my ankle while running. Being the stubborn (and sometimes idiotic) person that I am, I kept running and went to work that day wearing heels (it was only my second day on the job!). Well by the end of the day, my ankle was rapidly swelling to the size of a small cantaloupe. But that still didn't stop me, and I proceeded to walk on the injury around Chicago for 3 days. Finally, after some convincing, I went to the emergency room and was told that I most likely had a stress fracture and instructed to not put weight on the foot. No big deal, I thought. I was a bit sad to miss the race, but thought I would be back to running in no time.

Fast forward 2 years later, and I still am not running. In fact, I am barely walking, and it's a struggle to shower, run errands, or even just sit without thinking about the constant pain. Here is a quick overview of my situation. Since that day in June, I have had three surgeries. The second surgery was for a genetic condition called tarsal coalition. It took the doctors more than a year to discover this, but essentially, since I was a mere fetus, two bones in my foot had been growing together. Now, as this is a dominant gene trait, I was confused as to how no one else in my large family managed to come away with the condition. I must have won the genetic lottery.

The doctor performed a resection of my calcaneonavicular coalition, but sadly the pain was the same. After several more months and 1,000 of miles of travels to get second opinions, I learned I had anterior tarsal tunnel, which is an entrapment of a nerve (a more rare nerve entrapment than the common tarsal tunnel (which is like carpal tunnel in the foot)). Two months ago, I had surgery to release the nerve. As of now, I have yet to experience any pain relief, but the doctors again have given their favorite (and my worse nightmare) instruction: "give it more time."

As many romantic comedies would say, my situation is complicated. Every day is a struggle, but with the help of my husband, family, and friends, I have been able to deal with the daily emotional struggle. But not a day goes by where I don't wish I could go for a run, a walk, or even a sit without pain.

This picture represents the last day I wore heels, at my wedding in 2011.