Merry Christmas, Here’s a Flare

It’s been almost two and a half years since my accident and well over two years since I first heard the letters that have since hijacked my life: CRPS/RSD.

In that time, I read what the internet had to say. I heard horror stories. And still, I preferred to live in my RSDenial.

Until now, I considered myself different, lucky, an exception. Where there is a will there is a way. I will overcome this. I will push this into remission. I will stay the course. I will get better… or at least less bad…

Although my daily pain range is between an 8 and a 9, with what I call “surges” of 10, it has been a relatively constant state of debilitation. The increases in pain and symptoms have generally been very gradual with specific triggers (i.e. traveling for doctor appointments) and they taper with a begrudged amount of rest.

Since starting and building the mind numbing cocktail of medication over the years, many of the symptoms have been brought into a manageable range: the color changes, the swelling, the icy cold foot, the shiny skin, the skin on fire, the feeling that my fibula had shattered and punctured my skin. I guess you could say I had gotten used to the disease simply involving horrible crushing pain, stabbing pain, aching pain, and constant spasms and cramps in my leg, foot, and ankle. I guess you could say I had forgotten how bad all the other symptoms could be when combined and at their worst.

No matter how many times my neurologist looks me in the eyes and says definitively, “you have CRPS,” there is a part of me that doesn’t allow myself truly to believe. The permanence, the severity, the horribleness, they simply can’t be part of my life for the rest of my life. Still, after more than two years, I don’t truly believe. Or, I didn’t until Christmas Eve. (So, thank you very much, Santa, I guess I believe now…)

It had been a rough week. I had to go to court, I was trying to prepare for Christmas, I had no money to buy presents, I ate more cookies than vegetables, I felt “off.”

Yet, I, being me, kept up with my rehab routine. I pushed myself in the pool. I pushed my physical therapy. I didn’t do any more than usual. I stuck to my normal (doctor prescribed) routine, but my normal routine seemed impossible.

I thought I was just tired and stressed.

And I was just tired and stressed. However, the lesson I learned was that there is no longer any “just” to being tired and stressed with CRPS/RSD. Being tired and stressed are enough to tip the precariously and delicately balanced scales from the conqueror to the conquered.

I took this photo on Christmas Eve, when my leg was just beginning to flare. I did not have the wherewithal to take a photo when it was in full bloom.

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It has been three days, I haven’t left the house. I’ve barely left my bedroom. I have done my ankle exercises without resistance because they say movement helps (and I am still determined to fix that dang lateral rotation). I have eaten more vegetables than cookies.

The swelling has diminished a little, the coloring isn’t as extreme, and I’m capable again of coherent thought. My skin is continues to be on fire. My foot continues to be icy. My fibula continues to feel shattered. The crushing pain is more severe than it has been in years. The spasms are uncontrollable and violent despite 10mg of baclofen and 2mg of diazapam three times (each) per day.

And now I’m scared. Now my will feels weak. Now I feel deflated.

Am I back at the bottom of the mountain I was just starting to climb? Is two years’ worth of progress undone? If I am feeling the way I felt prior to my meds while taking my meds, does this mean more meds? Will I ever be normal again? I just want to be normal again.

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Public Record

Well, I know it’s hard to believe, but I just became an even more desirable person: Discover Card sued me. The judgment is now public record. Awesome.

I figured that since it’s now public record for the enjoyment of all who google me, I should publicly disclose what happened.

You see, when I fell down, I was a normal person in society who had a small amount of credit card debt. When I fell down, I thought I had a severe, but simple injury. I thought I would heal in a matter of weeks. The weeks dragged into months: doctors, tests, insurance complications, physical therapy, more doctors, more tests. Still, I thought I was on a linear  road to recovery.

Financially, I was OK. I had a bit of a nest egg. I cut back on expenses, still paid my bills on time, and for the most part functioned as if I would imminently return to my regularly scheduled life.

I was naive and overly hopeful. And then, reality hit.

Two years ago, the onslaught of information was too much for me to navigate. I was suddenly simultaneously thrown into several horrendously foreign situations: injury, illness, lawsuits, debt, joblessness, medication.

I tried to understand the complexities of CRPS and that its diagnosis would permanently change my life. I tried to understand the complexities of the various lawsuits in which I am involved, but not at liberty to discuss at this time. I tried to figure out how to keep paying my bills once my nest egg had been cracked and drained. I tried to grasp the concept that I wouldn’t be able to just go get a job to solve my financial problems. The harsh medication that I had to introduce to my body made trying to understand anything complex a fruitless endeavor.

Even in my bleak financial situation, I tried to stay responsible. I made phone calls. I was upfront and honest. Bank of America: worked with me, Citibank: worked with me, Discover Card: refused to work with me.  Discover felt that rather than negotiate, it would be more prudent to threaten legal ramifications and then follow through on those threats.

Their slogan is “we treat you the way you’d treat you.” However, the last time I checked, I wouldn’t sue myself when I am at the very lowest point of my life for thousands of dollars more than I borrowed, having no way of possibly paying.

After a year and a half of threats, I knew it was coming. My dad drove me to the court. My cane and I hobbled in to the courtroom. I showed my humiliated, tear-stained face to the judge. The attorney representing Discover Card phoned in.

The judge said words that he has obviously said many times before. It was all so routine, rehearsed, and yet the proceedings were completely foreign to me. It felt like a dream, a very bad dream, not helped by the fact I was medicated and foggy. I had to be, in order to handle the physical strain of appearing in court.

The judge asked me to speak. I told my story, how it came to this. I kept my composure, despite tears welling in my eyes. My brain in the background was screaming “how is this my life!?”

The outcome was no surprise. Judgment for the plaintiff.

The call ended. Merry Christmas, Discover Card.

The judge asked me more about myself and translated what happened. I am legally obligated to pay, but unless I can pay, I can’t “be thrown in jail.” (Jesus!) I will have to provide documentation proving that I can’t pay at some undisclosed point in time. If I don’t respond in another undisclosed amount of time, I can be “thrown in jail” for contempt.

The judge then took the time to express interest in me and my case. He told me that I was not the “typical” defendant in these types of cases. He allowed me to speak freely. He asked about CRPS. He asked about my other lawsuits. He showed sympathy and wished me luck.

My cane and I hobbled out of the courtroom. As my dad drove me home, I couldn’t help but reflect.

If I had known that this was going to be a permanent situation, I would have used my nest egg to pay off my debts in June, 2014. I would have left New York City much sooner. I would have had money left over. I would have made the conscious decision, instead of watching everything I worked hard to build slowly evaporate.

The rear view mirror is more clear than the windshield, especially during a hurricane of personal disaster. It’s hard to think clearly. It’s hard to let go. It’s hard to give up hope of a stable, controlled, happy life. It’s hard to face the reality that everything has changed forever. It’s hard to know the point when nothing is recoverable.

So there it is. My all-time low just got lower. At least the judge was kind to me.

Some Days are Better Than Others

So, yeah, I have this incurable degenerative nerve disease that I am trying to battle into remission. Most days are bad days, but I’m very good at hanging tough with my chin up and a killer f*ck this sh!t attitude. Most days, it isn’t too difficult for me to laugh at ridiculous things and find abundant joy in the world.

However, some days are very very bad days. My leg completely fails me, rehab is impossible, and the crushing pain makes me seriously consider cutting off my leg with a butter knife, or at least trying to find a way to rip this God-forsaken fibula out of my body…

On these days, which really don’t happen that often, I just need a little extra compassion, perhaps a little extra attention that doesn’t come in the form of me doing favors for other people. I just need the day off from putting on the act and trying to suck it up. And if all else fails, maybe try a hug. Oh yeah, that’s right anyone who might give me a hug is 100s, no, wait, 1000s of miles away. GoGoGadget arms…? I know that it is a huge burden, I really do…

But if I message you out of desperation and you’re uncertain how to respond, please try silly selfies, photos of cute sleeping puppies or children, promises that it will get better… If you’re still unclear, here is a list of the types of things that are not at all helpful:

-“I do not envy you in any way.”
-“Have you thought about joining a support group?”
-“Life sucks. We adapt.”
-Any comment relating to Donald J. Trump
-Asking me to tutor you in trigonometry…

Thank you for listening ~JP

Why Are You So Tired All The Time?

Why are you so tired all the time? You don’t *do* anything…

These thoughts are thought by other people, and sometimes me. It’s true. I’m probably the most judgmental person when it comes to placing judgment on my situation.

But, there are several legitimate reasons why I am so tired all the time.

  1. I don’t sleep. When I do sleep, it is very poor quality sleep. I put myself into a drug-induced near-coma every night. I pass out. I have wild dreams. Invariably, a jolt comes to my leg after about one sleep cycle. From that point on, the rest of the night consists of relaxation techniques and forcing myself into cat naps. I haven’t known a full and peaceful night’s sleep since June 14, 2014.
  2. Medication. I take four prescriptions that all list “may cause drowsiness or dizziness” as the primary side-effect. I take two of these prescriptions three times daily. I take the other two twice daily. As an added bonus if my allergies are bad, and if I want to try to catch an extra elusive 45 minutes of sleep, I may add a Benadryl to the cocktail.

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  3. And, oh, yeah. The sympathetic nerves in my right leg are constantly firing, sending perpetual “danger” signals to my brain. My right leg has been in a constant state of fight or flight for two and a half years. That alone is exhausting.

Thinking about it all makes me feel tired. Or, maybe, I am just actually very tired.