my hardest obstacle since paralysis (my pressure injury experience in 2026)

追加: 2026-05-09

[00:00:00]I'm Tara. I've been paralyzed for 5 years. And since then, I've actually still thought of myself as being a healthy and fit young person, despite what some people looking at me might assume, just looking at a wheelchair.

[00:00:16]And 2026 has just really shown me something else, some other kind of side to disability that I haven't seen in these past 5 years. And if you've been following me on Instagram, you've probably heard already that I've been dealing with something called a pressure injury. I have my notes here just to like help me piece together the timeline timeline, but I'm going to explain what a pressure injury is because it is in my opinion the most insidious complication after spinal cord injury because media is always portraying paraplegics, quadriplegics as this like sad story because we can't walk. But the truth is much darker than that because there's other things that really put a bigger damper on our life and can truly end our lives. So without further ado, let's get into um why 2026 has been the hardest year for me probably since being paralyzed 5 years ago. Now, I've kind of already alluded to this, but a pressure injury can also be called a bed sore.

[00:01:28]But the reason this happens is still pretty much the same. Someone is not moving enough. There's not enough positional changes. There's a decrease in blood flow to a particular area for too long. And when there's not enough blood flow to the area, the local tissue dies. And the amount of tissue death is what classifies how severe the wound is.

[00:01:50]And this can be as mild as just a red spot that doesn't blanch. Like normally a wound, if it's red, you'd press on that red spot, you'd lift your finger up and you'd see it turn pale again and become red. But a pressure injury stays red. There is no blanching. But it can be as severe as a very, very deep wound that reaches all the way to the bone and sometimes death. So, you're probably wondering what kind I have or had because I originally talked about having a pressure injury all the way in January. And the answer is I have had almost every stage of pressure injury except for stage 4. And I hope you're not squeamish because I will be putting photos in this video. I didn't post any unblurred photos on my other social media because the algorithms just don't really like it. But I think for educational purposes, it can be important to actually see what this looks like and to give people a better idea of like how serious this can become so quickly. Actually, I'll put a timestamp in the description. So, if you don't want to see it, that's okay. You can still watch the video. Just skip past the timestamps in the description.

[00:03:08]Let's just start off with how I originally got it. I originally went to New Hampshire to try adaptive skiing for the first time. Very fun. I've never been skiing before, but I got to try mono skiing in this like really beautiful accessible cabin up there. If you know me, you know that I just really love trying any adaptive sport or activity regardless of if I'm like very good at it. Um, so I was not very good at skiing. I was falling a lot, which I hear is pretty normal. But unfortunately, I am not the most perfect paraplegic in the terms of managing my own care because up until this point, I really have been so blessed to not deal with a lot of negative outcomes. I've had like a lot of UTI and a lot of like mild things that I just get over like you know not being able to walk I just get over that. Um but besides you know the not walking part I have just felt like very invincible. It gave me this perception that I didn't really need to do these pressure reliefs and skin inspections like other paraplegics did.

[00:04:32]And I would never recommend other paraplegics or quadriplegics to do the things that I do. But I had gotten away with it for so long. So I went on the ski trip. I fell a bunch of times. I remember getting in the ski bucket and if you're paralyzed, you know how important padding is. We are not supposed to sit on any hard surfaces, especially for a long period of time because we lack muscle. Like my legs, they might look semi-normal sometimes, but they are not. I assure to you. I have significant muscle wasting aka atrophy all throughout my legs. And this includes the booty, unfortunately. So, it really, really adds to the danger of sitting in things that are not well cushioned. And the ski bucket is cushioned, but they asked me if I wanted to put more cushion in it. I said no once again because I just felt so invincible looking back. Mistake number one. And I ski for 2 days, 4-hour sessions each day, I believe. I got home and I used the bathroom. This was my bow program night. And I felt something unusual. You know yourself. And I knew that something was not right because I could feel what I believed to be a blister, which immediately is signaling to me a stage 2 pressure injury. And the blister, as soon as I found it, it opened. And I call up my wheelchair tech and I start the process of getting a new wheelchair cushion. If you don't know, a air cushion is really recommended for people that have a history or acute pressure injury. So they tell me, "Okay, well, if you want the cushion, go to your PCP." I go to my PCP. I needed her documentation. So she looked at it and examined it, which keep in mind, she's a woman, but it's still a very vulnerable experience. And instead of like I don't know having any kind of like empathy for me going through this situation, my PCP was basically like, "Oh, this is nothing. This is like so superficial."

[00:06:51]Basically like it didn't matter. Like nothing. She still diagnosed me with a stage 2 pressure injury just like I thought. But she did not give me any other advice than what I already knew.

[00:07:01]She did not recommend any sort of dressing or covering. In fact, when I went to her office, she removed the band-aid, but I had to ask her to put a new band-aid on it because it's still open. It's an open blister. She wasn't going to put one on. So, I just think like from this initial visit, I was met with an unfortunate lack of education and bedside mannerism. and she didn't even put the paperwork in quickly. I waited over a month and a half. I got this cushion, my Rojo, on April the 2nd.

[00:07:40]3 weeks was waiting on the cushion itself. But like, come on. Despite me feeling like I was doing a really good job of bed rest and completely going out of my mind, I was not getting better, unfortunately. And this is when I'll start putting more photos on the screen because I was taking photos every day to track the progress. And it had just progressed every single day on top of the fact that I felt like my PCP was incapable of really giving any additional recommendations even if I went back to her. And I called wound care clinics. All of them were either not answering their phone with no voicemail system even set up or just not accepting new patients at all. One day, this is what the wound looked like. Now, I don't know if you are as freaked out as I was when I saw what it looked like because I can't feel it, right? Like I think when people have a wound and it hurts a lot, it gives you an indicator of like, oh, I've hurt myself very bad.

[00:08:54]But if it doesn't hurt, then you have no idea how severe it is. You can literally only judge the severity of the wound, on visible appearance, on heat, on any like physical generalized symptoms that you might be having from like a possible infection. So when I see the picture this one day, I feel that it's not an option to go to my PCP and I have a spinal cord injury specialist an hour and a half away, but no one to drive me there. So my option was either spend an hour and a half in the car each way driving myself putting more pressure on my wound or just go to my local hospital. And I chose hospital because I know that that wound was the textbook definition of escar which is a specific stage of pressure injury. It's typical not of stage 2 but of stage three and beyond. It can be a source of infection and normally is needing debridement. So, a medical professional has to go in and remove that tissue because the tissue is dead. It's black and leathery and hard like that because it's dead and it's just sitting there to be a vector for infection. And it's also a sign that like the wound itself is just getting worse and underneath you don't know what it looks like. I go to the hospital. I'm sitting there in a very particular way similar to this so that I can get the pressure off that one cheek, if you will, because I knew that I'd be sitting there for quite a while. And I knew that this wasn't an immediately life-threatening condition. But I did also think that this was my only option and that I needed medical attention. The PA and the nurse take me into this room.

[00:10:57]Luckily, these were also women. They're looking at it. I didn't even mention that I thought that maybe this was escar because I feel like if I deem like too educated and too self-aware, then some medical professionals are immediately skeptical of you. So, I just say that I'm very concerned of my rapid wound progression and possible need for debridement. And obviously, I can't see what they're doing. I can't feel what they're doing either. And they say that they are looking underneath the scab.

[00:11:32]They said that it looked red underneath which is good and that they claim it was not escar that it's just a scab which did not need removal. I am skeptical of this answer. They just discharged me and they say maybe you should go to wound care but no referral to wound care.

[00:11:53]After this experience, I obviously did not feel any better, but I still had to do something because despite my extensive bed rest before this, I knew that I had certain things coming up that I could not miss. I had a once-in-a-lifetime opportunity to go to Italy with my dad for free. It was covered for an adaptive soccer student exchange program that I had already signed up to do. I previously to this had never left the country before and I just did not want to give this opportunity up. That is something that you can judge me for, but not something that I regret and I'll get into why, but I knew that I had this coming up. I knew that I had other work opportunities. As someone that is self-employed in a creative industry, I am so lucky to have opportunities where I get to travel and do things that not everyone else does.

[00:12:54]And I want to take advantage of that as much as possible. And that meant to me taking the risk of just doing as much bed rest as I could in the now so that I could then do these trips, if that makes sense. So, I started actually using moist dressings because the wound itself I think being too dry could have contributed to the escar formation. In my amateur civilian opinion, not recommending anything to start moistening the wound back up as well as using water in the shower, not too aggressive. Throughout a couple days, I was able to actually remove the escar myself, and it actually looked really, really good. I felt confident that I would be okay going to Italy, which sounds crazy after like everything that I just said. And it was.

[00:13:54]It was because, you know, like the flight from Virginia all the way across the ocean, that's literally insane. when I've been on bed rest. But I was like, "F it. I go to Italy. I do my best on the actual plane to sit with my legs crossed." And you're probably like, "Ooh, that doesn't sound good for DVT risk, for blood clot risk." And you're probably right. I never said what I did is recommendable. A DVT is a perceived risk. It's a possible risk. Sitting on my butt for a very, very long plane ride, 10 hours or something, and making my pressure injury worse, is a known risk. I would rather avoid the known risk and just take my chances with a perceived risk by leaving my legs crossed for periods of time. I did take some breaks, like doing arm push-ups on the seat rest. I didn't have my Rojo expensive air cushion yet and I got this like knockoff air cushion from my friend Eric Condo and I was just going to make it through this flight by any means necessary and that I did. I actually was pretty good about doing. I also was taking a very expensive and disgusting supplement called Juven, which is meant for healing chronic wounds. I ended up not even tracking what my wound looked like while I was in Italy because I was so scared that if I looked at it while I was in Italy that one, it would freak me out so bad that it would ruin my trip.

[00:15:34]And two, even if I knew what it looked like in Italy, I don't think I would have wanted to act on that in a foreign country, I ignored it. And I don't know what to say other than it worked because when I got back from Italy, to my surprise, it looked so much better.

[00:15:55]It was almost closed and it made no sense to me. And I thought maybe it was the juven. And maybe it was, but I think we'll never exactly know. But I decided that that wasn't going to be my last trip. And I continued to push my luck.

[00:16:12]Actually, I had also already paid in advance for a conference called the Unite to Fight Paralysis Conference. I really, really wanted to go. My friends were going to be there. It was going to be a good networking work opportunity thing. And that was in DC, which is like a 4-hour drive from my home, only 2 days after I got home from Italy. So, very quick turnaround. I immediately drove myself 4 hours on my butt. And honestly, it didn't look that bad. But my OTAA certification exam I had also already paid for which is if you don't know a $500 exam that lasts 3 years and it enables you to work in OT legally. And I think I was up sitting on my butt that day for 6 hours. So, back to back to back. I'll set a photo here, but I immediately noticed some like purple hues to the wound, which I believed could be deep tissue injury, which is another stage of pressure injury. The hospital didn't really do me much good, but I can go back to that doctor I was talking about earlier, so I got a ride.

[00:17:35]Something happened on my like tellaalth appointment when I scheduled it and it wasn't even the doctor that I thought it was going to be. It ended up being orthopedic wound surgeon which is not exactly what I had planned but it did work out. I noticed the person that brings me in has a tag name tag that says LPN but she doesn't actually introduce herself at all. Nothing actually. It was really really bizarre.

[00:18:04]I see there's like these instruments set up on the table, the cutting tool, and a bunch of like other like scary stuff, and she just immediately tells me to sit on the exam chair, but there's not even one of those like disposable papers on it. When I expressed some concern about that, she did not seem interested in my concerns and solely out of a practical sense. I'm not able to show someone the wound from a sitting position. The bed has to be fully reclined so that I can be on my stomach to show someone. And so immediately we just got off on the wrong foot. And she does eventually put the bed down and put a pad down as well. But I had some hesitancy about getting on my stomach before I'd even seen the actual doctor because like I said, I had already seen her name tag. And so being on your stomach, I knew that once I got on my stomach, it was unlikely that I was going to be able to see the doctor.

[00:19:06]She seemed very rushed. So I went ahead and got on my stomach so that she could look at the wound. She said that it looked really, really good. Actually, in some ways, I can understand why they probably say that to think that it's comforting because they probably see patients that are stage 4 or patients that are on woundbacks, patients that have bone infections. So, someone like me is like not a worry to them. But it is very dismissive of how I feel when someone else, a practitioner, tells me that it's nothing to worry about and that it's really superficial and that it's very mild and that she thinks it's going to heal very quickly before she's even asked my history. She doesn't know how it occurred, how long I've even had it, how quickly it progressed. One of the major things that concerned me about the CNA is that when she was doing her preliminary assessment of the wound, I had to ask her to actually explain what she was doing because initially she was just talking to my partner Seth. I had to tell her that I actually can't see what she's doing, nor can I feel what she's doing. And to just have her talk to him like, "Don't worry, I'm going to make it bleed, but it's going to be fine." gives me way more anxiety than I think he's going to feel watching it.

[00:20:30]So, after I said like, "Hey, do you mind actually verbally explaining what you're doing to the wound?" She was like, "Oh, yeah, of course." Like, "I'm sorry. I actually didn't think about that." Which I understand. Still, when she left the room, I was just really really honestly like holding back my emotions because I didn't want the doctor to come in and see me crying, honestly. So I was like, "Okay, let me hold this together because maybe the doctor will be better." And luckily she was. When she came into the room, I could not see her. I was literally looking at the wall because I was on my stomach. So she came in and kind of made like a joking comment about coming to where I could actually look at her when she's talking to me. It made me feel a lot better. The doctor was also not rushing at all. She actually did take the time to look through the photos that I'd taken of the wound in the past and confirmed my wound was not just stage two. It was escar. It was not a scab and that I should have had moist dressing. She did say that I did a good job of taking care of it when no one else was overseeing my care. She gave some concrete recommendations besides just stay off of it, including increasing my use of Juven to my dismay, even though it's really gross and really expensive. Increasing my protein, which she actually gave me a specific number.

[00:22:02]I feel like everyone is so vague when they say high protein diet. She told me which dressing and bandages to use. She was also the first person to actually debreed the wound ever. So she just came and mechanically kind of like rubbed at the wound to my understanding to take off like the first layer of skin ideally kind of like kickstart healing again because it was a chronic wound and spoiler still is actually I am in month four and it's still not completely healed. It's probably only remaining like 10% healing left. But honestly, it's looked about the same, if not a little worse sometimes and a little bit better sometimes over the last like 2 months. So, I think we're finally nearing the end. But, I pretty much stopped putting a timeline on it because every time I said I'll definitely be better by then, I wasn't. And it just makes the disappointment worse. It's still closed, which is good because there's no infection risk. But technically, the stage I'm still in is deep tissue injury, which basically means that it looks not so bad from the outside, but most of the damage is under the surface. And that's why it has this like bruise kind of appearance. And it will get deeper purple or darker the worse or deeper the damage is to my understanding. But I'm finally starting to let go a little bit of some of the control that I feel like I've mentally tried to have over it because as I've mentioned throughout the entire video, the sense of control hasn't worked and it has only brought me immense anxiety.

[00:23:57]I have just really really struggled honestly more mentally with this than physically I would say because of like the perfectionism and self-lame that I've had social withdrawal because of bed rest and not being able to do my hobbies which honestly before this was a lot of going to adaptive group crossfit classes working out doing my wheelchair racing which I had to defer for my marathon this year for which was also a very big hit. And I've had to decline work opportunities and other really fun social opportunities. And I guess that's just another thing that I think medical professionals do not take into account when they look at someone's wound and they're like, "Oh, it's not that bad.

[00:24:45]It's not to the bone." When this person has been suffering this entire year. So, my overall lessons to any healthcare workers that are watching this video, I think we can all agree that there's some very large gaps in American healthcare when we're treating complex patients, disabled patients, any patients actually, which are really difficult to fix. But some small sustainable things that any healthcare worker can do to better our experiences. one, just try to have more empathy and understanding for patients. Like I said, it's a lot more sometimes than just what you see on the outside. Sometimes it is truly an iceberg. Sometimes you think that you're saying the nice thing to put a patient at ease by telling them whatever is wrong is so mild, but that does not make their suffering less. It just makes them feel less heard. Follow through is another thing because multiple doctors mentioned the idea of wound care but then never actually put in a referral or helped Cole. And that puts all of the burden on us as patients when we're already going through it. And the other thing that I think is so easy, but it's probably easy for others to forget is explaining to paralyzed patients what you're doing to them. If they can't see it, they need to know. You can't just talk to the other person in the room, an able-bodied person. It really feels like we're just some kind of inanimate object when we're not spoken to like the patient. And finally, lessons for myself going forward to try to be a little bit less perfectionistic. I've talked about relinquishing control a little bit.

[00:26:39]Sometimes the wound gets better when I do things wrong and sometimes the wound gets worse when I do things right. And that's not something that I can control.

[00:26:48]But I can try to control my perception of myself and not beat myself up for not being perfect. But the other concrete thing that I'm going to do moving forward is actually having better health management. I will do my best at least to do as frequent pressure reliefs as I can and skin inspections. So I think I'm going to be a little paranoid even after this is healed. Doing skin inspections probably more than recommended. And I hope that in watching this extremely long video about me ranting and complaining about my own poor experience in 2026 with a pressure relief that you take care of yourself and that you don't do risky things like maybe I was before.

[00:27:42]And also, I'd like to say that it was very heartwarming reading all of the comments when I did post about this with people saying like, "I really thank you so much for coming out about this because initially I wanted to keep this all to myself because I was embarrassed." So, I hope that at least if you've gotten to the end of this video that either you're a healthcare worker that maybe you can take some helpful tidbits out of this. you're a fellow disabled person that feels seen right now because you've experienced the same thing or you're a family member that might be able to use this information to help prevent. Thank you.

[00:28:22]I'll catch you in the next one.