Living with CRPS

Dwindling Expectations

Depression, suffering and anger are all apart of being human
-Janet Finch


**Trigger Warning** there are graphic pictures below. please be advised.

8 months ago today, I had a surgery that changed everything… The day started off like a normal Saturday, my boyfriend Nate and I woke up with plans for a late brunch at Le Peep to split their delicious Country Benedict and the Belgian Waffle combo, followed by an afternoon movie showing. Prior to our rendezvous at Le Peep, I was getting an MRI of my left foot. Little did I know I would receive a phone call that afternoon from the Surgeon on call advising me to get to the hospital right away to perform emergency surgery the following morning on my foot. 

Before I get too far ahead of myself, let me start from the beginning. One night after going on a nice long hike with my boyfriend and my dogs, I felt some cramping in my foot. Certain it was dehydration, I got myself a bottle of water and once finished I went to sleep. I woke up hysterically from pain in my foot, when I looked at it I found 2 golf ball sized lumps on my foot. they seemed to have a mind of their own, as if I could see it growing as I stared. Thinking I may have gotten a bug bite I inspected my foot for marks but nothing turned up. When I got up to get Neosporin I found that I could hardly put any pressure on my foot. Instantly worried I went to the Emergency Room, after 4 hours of waiting I was more than  excited to see my doctor.

Without any testing, the doctor proceeded to insert a needle that appeared to be the same length as the empire state building insistent that it was a cyst and it would be a simple fix. When she failed to drain the cyst she placed a lidocaine patch on my foot, tried again in attempts the patch would prevent me from screaming so much in pain. When that did not work they placed 2 gauze pads and sent me on my way because there was nothing they could do and no guidance they could give me. Filled with anger that they were less than helpful Nate decides the best decision is to go to another ER for a second opinion. In addition to having to visit a second ER, I developed an infection in my foot from where the Previous ER which caused an infection in my foot several days later. 

After testing the doctor was sure that it was not a cyst but he also had no idea as to what it exactly was, which led me to being referred to and getting surgery by a podiatrist. The doctor was very transparent in admitting he nor his colleagues had seen something quite like this prior. I attempted to work, continue on with my social life while waiting to find out what the issue with my foot is. 

Since they were not sure on the details as to what was wrong with my foot, I wasn’t really given any information prior to my surgery, the doctor didn’t explain anything to me and yet I did not see him prior to my surgery  nor do I remember any questions I have asked directly prior to the surgery due to anesthesia. When I woke up they let me know that part of my abductor halluces muscle in my foot had narcotized and started to calcify (hence the lumps on my foot). This resulted in a partial removal of the muscle that left me in severe nerve damage and I was told that they did not know specially why my muscle died but expected me to accept the reason why of “things just happen, you probably just had an old fracture that caused the muscle to inflame and develop necrosis. I sit here 3 surgeries and over 2 dozen appointments, and 8 months of waiting yet I still am not any closer to answers, or so it feels. My nerve pain continues to take over my body, cause more mobility problems and I have yet to find a diagnosis as to why this is happening. I have been rendered someone who deals with chronic pain, which is not helpful nor does it change the fact that I have no idea what’s wrong with me.

The recovery was more difficult than expected, by November 1 had developed my own way of doing things to get through because I could not truly work because of the pain as well as I had been place on medical leave by my doctor. By the time I had my most recent surgery, which was simply to correct scar tissue problems in hopes to alleviate my nerve pain. At this time the doctor discovered that the remainder of my muscle was necrotic and they were forced to remove it. I have been told it is a possible I won’t be able to return to work indefinitely.

How can such a determination be maid with out more information? I need answers, why is my body dying on me? What can I do to fix it, and if I can’t how do I learn how to aid it and treat myself in the best possible manner.  Being that I have suffered with Depression and Anxiety through out my entire adult life I noticed that all of the health problems, the uncertainty has brought me down, and I look at the pieces and can only think that they’ve changed yet I am still the same position, no progress and no solution.

I am Sad.
I am Hurting.
I am Depressed
I am Angry.
I am losing my hope while my faith in my doctor is dissolving.
Is it even worth it any more?

Why wasn’t I told the risks prior to surgery, how could this have happened, just over night when they claim this type of dead muscle develops over years and mine did so over night and then in months. the rest was gone. Why can’t they give me answers? The Surgeon, the Rheumatologist, the vascular tests and they know no more now than they did on the 1st MR. . Naturally I have began to feel like my life is falling apart, I am holding on to the hinges but I am breaking every second, emotionally, spiritually and physically. Conquer my doubts in myself. My ability to push through. I’ve done it dozen’s of time for my dad, yet I can seem to do it for myself. After nearly a month of guidance urging a me to get therapist or a counselor I finally got the courage to call, and schedule appointment.

How do I cope? What do I do? because the last surgery did worse than the first my dwindling expectations are slowly but surely breaking. In retrospect I wasn’t forewarned, I wasn’t prepared and there is not a thing I could have done that would change where I am today, in which case I would still be where I am, their lack of explanations just continue to haunt me, taunt me and force me to let down myself  every time. 

All I can do now is wait, wait for the next appointment, fight for myself, fight for answers, fight to preserver.  Not just in physical health but mental. Fight to surpass this depression, this health problem and anything else that stands in my way.

Not sure how to end, or sign off on this blog so I’ll just leave it at this

….Until Later…

 

 


 

 

 

 

 

1 thought on “Dwindling Expectations”

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