(TW: Medical, Talk of Suicide, Suicidal Ideation, Mental Health Struggles, & Frustration With the Medical Field?)
So, I’m pretty sure you can already guess form the title what this one is going to be all about. On September 14th, 2022, I had my second Abbott spinal cord stimulator/neurostimulator DRG device placed. A complete and total revision of a surgery that had been done less than a year before, whereas they normally last anywhere between 5-10 years. Though, I’ve come to learn that the way things “should” be and “normally” are, isn’t the way that they actually are.
In less than a year, my device stopped working. Although, I don’t know if it ever really worked correctly in the first place. Because from what I understand, it’s very rare for these devices to just “stop working” before their time, and battery is up. The trial stimulator was bulky and uncomfortable but, that’s about all it was. I spent the three days with the Trial asleep, drugged up, and hardly able to leave my bed by the time my doctor decided that it provided me with enough relief to move forward with the full implant.
Before that, I was taking so many Advil, Tylenol, and any other over the counter medication that I could to try to manage my pain, and even though none of it worked, I still kept trying because I felt like I didn’t have any other choice. Because when you’re in excruciating pain, there comes a point where the only thing that you think about is how to make that pain stop. How to get even five minutes of relief; pain like that is no joke. The kind of pain that makes you nauseated, exhausted, and yet unable to sleep. The kind of pain that is unending, and unescapable, that you feel like the only way to escape is by ending your own life. -that is why it’s called the “suicide disease.”
I tried voicing my concerns to the doctor. He said that it would help, and that we should go ahead with the full implant, and even though I was apprehensive and uncomfortable, I was compliant. I was compliant because, I was still at a naïve place in my recovery, and the acceptance of my own limitations, where I was too afraid to speak up. I know that it stems from a place of medical trauma and gaslighting- especially after knowing when I fell down the stairs on August 21st, 2020, that there was something far more wrong than they told me.
I knew that there was something wrong, and they didn’t want to listen to me. But if you’ve been with me awhile, then you already know all of this. Because the ER said that they didn’t see any breaks or fractures, or anything “severely” wrong with me, and said that I’d only sprained my ankle, that is what began this journey of medical torture for me. And while I’d like to think that maybe I could have gotten better if I’d been given the correct diagnosis, I know now that I have something called Ehlers-Danlos Syndrome, and that means that almost all of the cards have been stacked against me for a very, very long time.
The hospital gave me crutches, told me to take some over the counter pain medication, and to put ice on it. And it took me so long to get someone to actually listen to me. Months, emergency room visits, limping around, and learning how to adapt to the constant and excruciating pain that I was in. And the inability to walk “properly.” Although I have now come to realize that maybe, I never walked “properly” to begin with. I have chronic ligament instability- my ankles have clicked, rolled, and popped for as long as I can remember. I have always struggled to stand or walk for long periods of time- gym class was always a struggle, and I couldn’t do some of the things that the other kids could. I thought that maybe I was just fat. Maybe I was just lazy, or maybe I was just a klutz because it didn’t matter if I was walking across a completely flat surface, if I stepped down a certain way, it was inevitable for my ankle to crunch and roll.
This may have something to do with both the Ehlers Danlos and the chronic ankle instability, however, I do know one thing for sure. I deserved to be listened to, and that maybe if I were assigned male at birth, my pain would have been taken seriously. Because so often in the medical community, women are not believed when it comes to being in extreme amounts of pain; the same as people of color are also not believed when it comes to being in ridiculous amounts of pain. The two communities are then looked at as “drug seekers” who want nothing more than to get high, when that couldn’t be further from the truth.
I went through so many tests. So many doctors, and so many pills that just didn’t work.
And now I’m at a point where I’ve had my new stimulator for two months, and where I wish I could say that I’ve had some kind of amazing breakthrough, or that my symptoms have improved but… I can’t. The DRG was billed to me by my pain management doctor as the “end all, be all” miracle cure that would help me but, the truth is, at least for me, it’s not. Like all medications, medical devices, and whatnot, it is not a 100% surefire cure, and there is a failure rate for these things. I am that failure rate. My mobility is still garbage. If anything, it feels worse off now than it was before the surgery. After waking up with the Bell’s Palsy, my left arm is still pretty tingly and numb, also. I’m getting a little bit of hot and cold perception back as time goes on, which is nice, or it would be if it didn’t mean that I was constantly burning my damn hand on the Ninja.
As for my left leg- it’s still not quite right. It was never really “right” to begin with honestly but, from a standpoint of pre and post-op? It was definitely better pre-op. When I woke up after the surgery, I immediately fell off, and not in that bleary, “world is spinning because I’m coming down off of some seriously strong medications” off. My leg felt both heavy and kind of numb. The best way I can describe it is, that if your hand falls asleep, and as you’re moving it around it slowly starts to come “back to life” but, never all the way.
Instead, the pins and needles feel like daggers.
The pain is still at a constant 8-9. On my good days, I wake up, and the pain is sitting at a solid 6.5 but, the second that my feet hit the floor, and I try to start moving around, it just starts climbing higher and higher. The muscle spasms are still out of control, and out of this world. I also still wake up out of a dead sleep to muscle spasms that make me honestly contemplate ending things, and I still wonder how I’m not waking Angel up in the middle of the night because of them. There are also times where I’ll just be walking around, and my knee or the leg itself, will just up and give out- and yes, this may not be something that the stimulator can necessarily fix or control but, my doctor did say that with this new device it should be getting better but, it’s not.
On the 25th, I went back down to Rush in the city for yet another follow-up appointment. By then, I thought maybe my back wouldn’t be such an itchy, burning, pus-filled mess. I was way too optimistic because it wasn’t. I was also still pulling stitches- and I don’t just mean little threads but large, triple-knotted cloth stitches, out of my wounds much to my doctor’s horror. He claims that they’re dissolvable stitches but, I am not stupid, I know that dissolving stitches are clear, and look vaguely like fishing line, and not cotton threads. Why I thought that he’d take ownership of not having removed the stitches from my back properly, is way beyond me. He never takes proper ownership of any of the things that he’s done that have either turned out wrong, or just not gone the way that they’re supposed to.
I’m still extremely reactive to heat, cold, touch, or just the fact that my leg exists, and my circulation is still an absolute and total nightmare. It doesn’t matter how hot or cold the shower is, my foot and leg still feel like an ice cube 99% of the time, and Angel has zero trouble telling me all about my cold toes. This is another thing that the new stimulator was supposed to help with, and it didn’t. Just like the swelling, which was supposed to stop being so extreme. Do I even need to tell you that it’s not better after all of the things that you’ve already read? Because it’s not. It’s still swollen to the point where I cannot wear the braces that are supposed to help my ankles stop from rolling constantly and provide me with more stability. His only answer for that was to go back to physical therapy, which is where I have been since Halloween. Three times a week. Has that helped? Also no.
Physical therapy has actually been exacerbating the problems.
Every time I’m there, they end up making me hyperextend my ankles, or my knees, or I’m laying on my back in a position that makes the DRG device, which is not deep enough, so it digs into both my back and the table. A normal person might be able to do these yoga and Pilates exercises easily. I, on the other hand, cannot because, my stupid hypermobile body doesn’t know when and where to stop.
I am sick and tired of being sick and tired all the time. Because it is literally all the damn time. Either the pain, or the constant debilitating fatigue, have me all but bedbound all the time, and it feels like none of my doctors care. The rheumatologist is doing his best and trying to help me, and I see him later this week. My allergist is also on my side, and he’s doing his best; we’ll hopefully have some kind of answers about whether or not I have MCAS after all of this testing when I see him tomorrow.
I’m just frustrated. I’m frustrated by the doctors appointments, and I’m also frustrated because on Tuesday, I have to drop Angel off at O’Hare because she’s leaving. Again. And I don’t want to be alone again. I really, really don’t want to be alone again…
-Sky
Skyla N. Lambert
Author | Blogger | Bookworm | Depressed AF
E. skylanarissalambert@gmail.com
https://linktr.ee/SkylaNarissa
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