Update: I’m Dead Inside (Literally)

Some of you may have noticed I haven’t written anything in quite a while. This past year has been one of the worst of my life. Even more has been added to the list of things I cannot do and so I have been going through the stages of grief as a result (but had an extended stay on the depression part.)

A New Diagnosis

By September 2017, my ankle had been really really hurting for the past 3 years, but my doctors kept writing it off. “It’s just EDS pain,” they insisted, writing me off again and again. Yes, EDS led to my ankles usually being sore but not nearly as painful so I knew something was wrong. After insisting it was different than EDS pain and asking for my rheumatologist to look into it for three years straight I finally had an X-ray.

That X-Ray led to an MRI and that MRI led to a surgeon. In August I was diagnosed with Avascular Necrosis (AVN) in my ankle. AVN is essentially when the bone dies because it doesn’t get enough oxygen from the blood. In some cases the bone fully collapses, my ankle being one of those lucky cases. I had been walking around on a collapsed bone in my ankle for THREE YEARS.

As if that wasn’t enough to deal with, I was diagnosed with AVN in seven other joints (so far.) I have AVN in one shoulder, both hips, both knees, both ankles, and in my toes. My ankle AVN was by far the most severe as my talus (bone in ankle) had already collapsed. However, collapse in my hips is inevitable and I will likely need a few more joint replacements.

So I finally had an answer to why my pain had gotten so much worse over the past couple years, but it definitely wasn’t an answer I wanted. AVN is incredibly rare and there aren’t many treatment options. Many are very new or even experimental. When bones are in the early stages there are surgical options to put off joint replacements, but when it is very advanced joint replacement is the only treatment. Unfortunately, the only proven treatment for AVN is surgery.

Surgery

So in November 2017, I had my ankle replaced and fused. In addition, a procedure was done on my hip that was supposed to put off collapse. I think that hip procedure failed as my hip is far worse off now, but the ankle replacement is going well.

I’ll write its own piece on my ankle replacement as well as hip surgery. The science behind it is amazing and there’s a lot to say. Even though my ankle is recovering well, I’ve been really struggling with the grief and isolation that comes with a major surgery like this.

Limitations & Coping

I can no longer point or flex my foot and never will be able to. It’s hard to not think of the list of things I can’t do; it feels like it’s getting longer by the day. I haven’t been able to dance in a couple years, but I always thought of it as a possibility. Now I’m not sure it is. I can’t drive and will have to relearn to eventually once I’m healed. Hiking also seems unlikely. I’m actually okay with the never being able to wear heels again part.

I’ve coped with my EDS and POTS, but this is a whole different story. AVN has the potential to spread anywhere. Every joint pain I have worries me that I have AVN in another joint. Sometimes I can feel or even hear my joints crumbling or bone grinding on bone. I feel like I’m dying on the inside and it’s one of the most unnerving conditions I’ve had. It’s beyond depressing to know your body is degenerating and feeling it happen doesn’t help.

I’ve also had trouble coping with isolation. I rarely leave my house for something other than a doctors appointment due to pain. I moved to a place without stairs and that has helped. I also plan to dedicate a whole article to chronic pain and isolation in the future.

So there’s my very quick update. So many other things have happened that I will be writing about more in the future. For example, getting more diagnoses, finally getting IV hydration, PICC lines, a CBD product review, and more. Thanks for sticking around during my writing slump!

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4 Problems With The Pain Scale

My life has been filled with a lot of pain and many different types of pain. In the past 7 years, I have not had a single day without pain- not one. I have good days and bad days, but even the good days are filled with pain. Aside from the pain itself, the pain scale is one of the banes of my existence.

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1. It Doesn’t Work For Chronic Pain

Not only is it a pretty terrible scale for measuring pain in the average person, but it is even less effective for people with chronic pain.

I’ve had a lot of people when talking about pain, make the comment “but you’re used to it.” This isn’t exactly true. My pain is actually worse and more unbearable than it has ever been before. Pain doesn’t hurt any less because you are used to it. What you really get used to is living with it. You get used to pretending you don’t have pain, using coping methods such as distraction, and hiding the pain.

If I had the average response to dislocating a joint that the average person did I would be crying, distorting my face, and screaming far too often to navigate this world. So I’ve learned to breathe through it and even smile. Only people very close to me can even tell that something is happening- and often they can’t even tell. Developing this coping mechanism is so necessary for living with chronic pain and such a problem at the doctor’s office.

I have had at least a dozen kidney stones. The pain of a kidney stone is slightly worse than my average Ehler’s Danlos pain, but not enough that I can easily shed my coping mechanism of hiding my pain. One night I began to pee blood and couldn’t keep fluids down so I went to the ER. I told them I had a kidney stone- I know full well what they feel like by now. The nurse told me I couldn’t have a kidney stone, “Even giant footballer men roll into the fetal position from kidney stones.” They did a scan and, of course, I had a large kidney stone. I eventually got treatment, but first was told I wasn’t in enough pain. It was infuriating and it has happened more than once.

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It has gotten to the point where I almost feel like I have to try and visibly show the pain I feel inside, but it is still so difficult.

2. It Isn’t Standardized

Another problem is the scale means something different to everyone. I’ve been told 10/10 is the worst pain I’ve ever felt and also told that 10/10 is the worst pain I can imagine. These are far different measurements! For the same pain, I would rate it as a 8 on the first scale and a 3 on the second (I can imagine some horrific pain).

3. We Can Only Compare Pain- Not Imagine It

Generally, we can only rate our pain based on comparisons to other pain we have actually felt. That is the best way to understand someone’s pain. However, many people are at the extremes- they have either had a fairly pain free life or have experienced immense pain. Two people’s 7/10 may be wildly different. The scale does not work as a stand-alone tool without considering the pain patients have felt in the past.

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4. The Scale Is Used Against Patients

Another problem with the pain scale is that it is commonly used by nurses and doctors against the patient. If you answer too high on the pain scale and they can’t see the cause of your pain, they will assume you are lying to get drugs. If you answer an 8 and then check messages on your phone (even though distraction is one of the best solutions to pain) they will assume you are lying. If you answer too low they won’t take you seriously. Instead of using the scale to help treat patients it is often used to hurt patients.

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So if the pain scale is the problem what is the answer? Medical professionals need to listen to their patients when they describe their pain and take a look at their medical history. The pain scale needs to be taken with a grain of salt when used and needs to be standardized. Medical professionals need to make up their minds. What is a 10/10? Decide and then stick to it!

Update: Because I’m Special Like That

Like a lot of people with Ehler’s Danlos III, I have back problems and hip problems. In the past, I have received epidurals for the pain and the injections have been lifesavers.  This time my body decided to be uncooperative.

The first injection went fine, but as they began the second injection Cerebral Spinal Fluid began to leak. They stopped the procedure to make sure it would stop. It did so I went back into the operating room a second time. When I came to I could feel nothing from the waist down and couldn’t move anything from the waist down either. Now I am not talking about numbness or weakness. I had full on temporary paralysis. It was such a strange feeling!

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Looking awesome in my funny hat and gown.

My doctor wasn’t too worried and assured me it wouldn’t be permanent. She said out of he two thousand procedures she has done this has only happened once before. Because I am special like that.

Over the next few hours I began to regain feeling in my hips, legs, and finally toes. The saddest part of the whole experience is that when I could feel nothing from the waist down was the least pain I’ve been in for the past six years. It was a strange thing to enjoy (only because I knew it was temporary).

Now the recovery is extremely painful and slow. I can only help some of it helped. We will see.