This is not to get pity or anything. It's just a thing that I am sharing. A thing that is a big deal to me.
***
I've decided to be a bigger advocate for my physical health. I am super big on advocating for my MENTAL health but have slacked in other areas.
A lot of it is because of my weight. Part of me (and I cannot even believe this) still thinks that I deserve getting sick because I have allowed myself to become so fat. Part of me thinks that I have no right to complain.
Which leads me to this...
***
For the past few years, I have been in awful pain. My neck, my shoulder, my elbow, my hands, and my back. Horrible pain that sometimes made it impossible to do basic things. Mike has had to help me do a lot of things which made me (not by his actions) feel really demoralized.
He has helped me wash my hair, helped me put on my bra and my shirts, has helped me comb my hair and put styling cream in it, and has even helped me in and out of the shower. It's not romantic and it's not cute.
Basically, most things that require me to life my arms over my head, or bend my back in certain ways are painful and often not possible.
***
I spoke to my doctor about it. She gave me Gabapentin. That helped my hands TREMENDOUSLY, but didn't help anything else. I went to the ER multiple times only to be told nothing is wrong and sent away with ten Tramadol. I saw a sports medicine doctor who told me, "There seems to be something fuzzy on your shoulder. It's probably tendinitis. Do these exercises."
***
And so I took the pills and did the exercises and just suffered. And suffered. And suffered.
A few months ago, I could not take it, anymore. Sneezing and breathing were hurting my back.
Back to the ER I went.
After x-rays and blood tests and an hour or two of waiting, the nurse came back, mentioned something about spurs on my spine and that I had something called DISH, but she didn't really understand it. "Don't worry," she said. "That's not causing your pain."
***
So I accepted that. I went home, took some Tramadol and some muscle relaxers and still went through nights and days of pain.
I saw my own doctor and she referred me to a physical therapist. I told her that I could not move and SOMETHING was wrong. "We'll discuss it at your next appointment. Let's get your mental health together first."
***
After a few more weeks of pain, I said, "Wait a fucking minute. I am going insane with pain. How on EARTH is my mental health going to get any better if I CANNOT SLEEP OR MOVE PROPERLY?!?"
So I messaged my doctor and said SOMETHING IS WRONG. I don't necessarily want drugs, but I want to know wtf is wrong with me.
And she replied, "Did the ER not explain to you that you have Diffuse Idiopathic Skeletal Hyperostosis (DISH). That's what's causing your pain."
And I cried.
At first I cried because I was like, "OMG I KNOW WHAT IT IS." Then I cried because I was angry. Angry because I had been complaining about this for YEARS without anyone truly taking me seriously. Angry because the sports therapy doctor SAW "something fuzzy" on my x-rays and did nothing about it. Angry because the ER nurse SPECIFICALLY told me that it wouldn't cause pain. So angry.
***
And I decided to do my OWN research. The Mayo Clinic basically says it is a disease in which bone spurs grow (mostly in your thoracic region and sometimes your shoulder) on your spine and the ligaments along your spine calcify.
While - theoretically - the actual bone GROWTH wouldn't hurt, the fact that your spine is now encased in bone and bone spurs causes immense pain. It pushes against your lungs (which is why it sometimes hurts to breathe or sneeze). It irritates you spinal nerves. It makes certain mobility functions almost impossible.
So WHY was no one explaining this to me or taking me seriously? Why did I have to join groups and read research papers and delve into the depths of the world wide web (because pretty much most doctors say it is painless) to find out MORE?
***
I joined a support group on Facebook and found people suffering the SAME. EXACT. THINGS. I was. Reading their posts was like coming home. I cried and cried for days. I cried because I finally felt validated. I cried because their stories were heartbreaking. And I cried because I don't know what effect this will have on my life in the future.
***
Today is not a bad day. I was able to wipe myself without screaming (I am not joking - wiping is so painful). I did some dishes. I cooked dinner.
The very worst experience I've had with this was having my back completely lock up in the shower while wave after wave of back spasms rocked through my body as Mike could do nothing but watch me scream. I wanted to just die. Literally. It was the worst pain of my life (and I've had two c-sections, two tattoos, and a kidney stone) and it seemed to last forever, although it was probably five minutes.
Some days I cannot get out of bed and Mike has to take a cab home from work and friends have to pick my girls up from school.
It is very, very demoralizing.
***
I will be seeing a rheumatologist soon (because it's considered a degenerative form of arthritis by some) and I push through the pain when I can. I am allergic to both aspirin and ibuprofen, so I'm screwed there.
The girls help me a lot. Mike does the difficult things when I can't.
And I hope. I hope for pain-free days. I hope that it doesn't get much worse. I hope that keeping myself moving even when I don't want to will help my body from getting too lax.
I just hope.
***
I leave you with this:
No comments:
Post a Comment