i want my baby back baby back

Hey tumblr, I’m a web developer in based in DC and I’m looking for a few responses to this survey. I’ve suffered from chronic pain for several years, and am building applications and products to help others like me. If you can take a few minutes to send a response to this survey, it’d really help me out.

All answers will be anonymous, it’s purely for UX research and structuring the products.

Responses can be sent to [email protected] to protect privacy, but getting some responses on this would really help me out.

Thank you for reading!

I’ve been seeing a few “energy balancing/sensing” kind of practitioners lately while I wait for my doctors appointments.

The common themes that these women have all felt from me are anger, grief and sadness.

Since learning that doctors have no plan and that my eight months of painful treatments were a damaging waste, I’ve been an emotional wreck. Getting in fights with friends, crying in the bathroom at the office, having trouble getting out of bed.

I feel like I should be better than that: better than getting upset and letting the pain and frustration get to me. I’m never ruled by my feelings. I’m laid back, I’m chill. But that doesn’t seem to be the case anymore and I’m struggling with it.

I’m grieving the loss of my body. The loss of my athleticism that I so closely identified with the last 20 years of my life. The loss of the ability to dance, run around and just feel alert and pain-free.

I’m trying to focus now on just getting through this process. No one knows how long this will take, or if it will even end. I’m going to keep practicing mindfulness and self love, because that’s all I can do. I can’t let this pain rip my achievements from me. I clawed my way out of the grave when I was 21, crawled through my bachelors degree, an engineering intensive course, and am now an employed programmer.

Today I’m appreciating the rain. I’m sitting outside the office on the pavement under an awning, listening to the thunder and feeling the cool air on my skin.

family: stop trying to diagnose and overthink things

me: yeah sounds like a good idea

So I’ve been bounced between specialists in gastro, neuro, pain and spine for over a year and a half. I ended up getting an MRI that showed several bulging discs in my back, and so my neurologist sent me to a spine and pain clinic to get nerve blocks to test the area.

For 8 months, I’ve gotten dozens of painful injections in my back, ribs and abdomen. I’ve had a spinal block, dozens of intercostal blocks, a xiphoid process injection and costochondral cartilage blocks.

I wasn’t feeling any relief, the injections were extremely painful for days at a time, and I was having to take too much time out of work. I asked the doctor about our game plan, and his only answer was “there’s no way of knowing; we just keep going. we might cut out the nerves in your top three ribs if we have to.” I decided to get a second opinion.

Turns out those 8 months were a waste of time.

I went to a neurosurgeon that specializes in peripheral neuralgia and neurectomies (nerve pain and nerve removal surgery). He immediately told me that I should never go back to that doctor or clinic.

First of all: I got way too many steroid injections, when they were telling me I was getting nerve blocks. The doctor had been calling them nerve blocks the whole time, but it turns out he was bending the truth.

Second: The nerves where I have the most pain cannot be removed. It’s the top three ribs on my right side, from slightly under my armpit to underneath my boob. Removing those nerves would cause me to lose function in my right chest and my muscles would completely fail to work.

Third: Those doctors had no idea what was wrong with me, and were likely putting me through extremely painful and isolating procedures to bill me for steroids. The billing statement showed that they were barely using any anesthetic (the cheaper one, but the one that I was supposed to be getting) and were overloading me with more expensive steroids.

I’m the child of two engineers. I’m a programmer. I have access to some of the best medical care in the world, and I got fucked over by a clinic for 8 months.