Where I Have Been

Back in November, I didn’t think my situation would be as lengthy or difficult or as absolutely mind numbing as it has proven itself. I developed sepsis in a pressure wound in my sacral area. I have no feeling from my waist down so I did not know I had it until it was way, way, way too late. I thought I had the flu for over a week until finally I agreed to go to Urgent Care and they told me to go to the ER. This was after they were about to send me home with an inhaler as a precaution for a respiratory virus although I tested negative for everything. The first lesson I learned that day is you know your body and doctors are supposed to work for YOUR health, don’t let the doctors tell you have something when you KNOW it’s not correct. Ask for more testing if needed, get a second opinion, go to the ER – because if I would’ve gone home that night I probably would have died, and that’s not even being dramatic. I wish I was being dramatic.

 

So after they admitted me into the hospital I spent three weeks in patient. I underwent surgery twice to clean out the wound I believe the first measurements were over 14 cm (Which means huge) and it was deep down to the bone – that’s important later. The plastic surgery team placed a wound vac, a very common treatment for a Stage 4 wound. (Google is your friend if you need more explanations on anything I’m talking about, that’s how I learned what was going on with me) I had two blood transfusions because they found I’m anemic. I’m now on iron to correct it. And I really don’t remember much of the hospital because I was still SO SICK. I do remember they had good food and made me protein shakes. One of the things I’m SUPPOSED to be doing is eating a lot of protein because your skin needs it to heal. We’ll get to what happened to food later.

 

I spent three weeks in the hospital. I got my first PICC line. The most traumatic event of this whole thing… and then they took it out and two months later I needed it again. I cried both times. Not just a little tear. I sobbed.

 

Once I was able to be admitted into a skilled nursing facility to get 24 hour nursing care, I felt okay. The wound continues to heal and each day I’m getting closer to some sort of health again. In February, I started getting feverish. They took blood (the first of many, many, many times) PS – Natalie, if you’re reading this. I’m very very sorry for the number times I’ll say the B word in this. The results showed MRSA, which is quite common in these places, however, you do need IV antibiotics for six weeks for treatment. So back to another PICC line. I’m still on that antibiotic for another three days. It’s been since beginning of February when they started me on Rocephin only to find out I’m very allergic to that medication. One night I itched my scalp for an hour with no relief. I finally had to sit on my hands at 2 AM. They finally switched to a different drug and an admiration time that wasn’t as insane as midnight. (Just 5 AM and 6 PM – 5 AM is hard) Midnight administration meant no sleep whatsoever.

 

This six week treatment of antibiotics has tested every single one of my limits, physical, emotional, mental, my patience… I wouldn’t have made it through without faith, friends, family. I have the BEST family and the BEST friends I didn’t ask for, but I’m sure glad I have them. From getting me out of here for a few hours (and almost breaking curfew) to sending me stuffed animals or junk food, and just texting or facetiming me to include me in everything going on at places and events I would normally attend. It’s the biggest comfort to me. I’m extremely blessed.

 

A lot of days aren’t good. But the good ones are GREAT days. I finally got into therapy and it’s helped retain some strength although I’m still very weak. Gaining even a pound is a win. It keeps from needing a feeding tube. Even though with the food at the facility being as terrible as it is, it sometimes sounds like a good option until I remember how a feeding tube works. It’s not fun. My grandparents show up with food sometimes and it’s the best thing that happens that day, because food = good mood. Today I’m in a terrible mood because the food choices were terrible. (Has anyone heard of just a plain chicken breast and putting ranch or BBQ sauce on the side? No? Just me?) They wonder why I don’t have enough protein in my system, but either the protein they provide isn’t enough, or it’s covered under unidentifiable substances that make me gag a lot. High gag reflex is part of my disability, and yes, I’ve tried so hard to correct it in 26 years. To the point that I threw up an onion after I was dared to eat a tiny little chopped piece. I still won the dollar from my big brother though!

 

I’ve already said I had a wound vac as a treatment early on, when I got MRSA, they took it off. I’m still unsure why, but they kept citing the infection. So they switched me to a regular dressing once a day. It’s easier, but it doesn’t seem to promote healing as fast. After 30 days of very stagnant healing, physical therapy started on diathermy to promote healing. I don’t mind it. It gives me the excuse to nap for half an hour during the day. It’s only the second week of this treatment and it has been recommended to go through a 30 day cycle. Still not mad about it. Still using it as an excuse for a nap. Honestly, I use healing my body as a reason for a nap. It’s a good reason.

 

The worst part of all of this has definitely been the toll it has taken on my skin and hair. It’s the most vain thing I could be worried about when my body can shut down from what’s happening in my body. I’ve always had really thick curly hair that has thinned so much and fallen out to the point of almost being able to count the number of hairs on my head. Another friend, Hannah, is sick and in bed like me, so we talk nonstop every day… unless one of us says they’re not up to talking to people that day – and it does happen, even when you feel socially deprived (I just wanna smell a guy who ISN’T treating me or related to me and visiting I’m 26 that’s not weird… is it?) I don’t even remember the point of what I was saying.

 

After four weeks of this infection I finally got in to see an infectious disease specialist to get his opinion, and an MRI to confirm I have osteomyelitis in two places in my sacral bones. So not only did I have a blood infection, I also have a bone infection. They won’t treat the osteomyelitis until the wound is closed because the treatment is very harsh and only want to treat me once for it. If the wound is open it’s always going to be susceptible to infection. I finally decided on surgery to close the wound. We’re finally to today. I’m still waiting to talk to my plastic surgeon about surgery, I slept three hours last night, I tried to eat, it’s nice outside and I don’t even feel well enough to go outside and enjoy it. I’m feeling new pain that I never felt (up to this point the pain has been nothing since I can’t feel where the location of the wound) It can be a sign of nerve regeneration, but that also means I may start feeling more pain especially the osteomyelitis.

 

I remember my point from two paragraphs ago. Hannah has to shave her head for surgery, so I’m going to do the same to regrow my hair. It’s going up on a Sunday… not a Tuesday… in my room… not a club. As scary as that decision was to make, now I just can’t wait for it to happen. I’m ready to not brush my hair anymore or think it looks so bad, or wash it. Once I’m back to health, I’ll let it grow out again. In the meantime, if you have suggestions for cute cap/scarf places let me know, because I’m not about to hide the fact I did this. I’ve already been called insane for doing it, but I think makes the MOST sense out of any of my blind decision making. Someone told me I’m an adult and this is what adults do. So, four year old me, you’re never going to call the infomercial number to buy ZooBooks when you’re 18, so stop saying you want to be an adult.

 

We’re good. I’m going to make it. I promise I am. I’m just really annoyed with the “I hope you get out soon” comments from well meaning friends and family, and I KNOW it’s my fault because I didn’t disclose this much publicly until just now. I’m doing it now not just for people. But for me. To see how LONG of a process this has been. And these are only the details I WANT to share. I’ll probably go back and elaborate in other blog posts or updates now that I’m finally gaining enough confidence and not worrying about feeling pitied.

 

I just want to be thought of instead of “Oh, she’s young, she’ll recover fast.” No, this is not a fast recovery. Once I TALK to a surgeon the surgery won’t be for most likely another two months. In the meantime I get to sit in a not very comfortable bed trying to reposition to NOT get another sore, in a small room with old people screaming down the hallway, and try to stomach a bite of their terrible food. (Again, I’m not the only resident here that complains about the food daily, the CNAs feel bad passing trays at least twice a week)

 

After surgery, it is required that I am in-patient for 3-4 weeks while I lie flat on my back, not moving in an air-flow bed; the worst bed out of all beds, but helps keep pressure off the wound/surgical site. It isn’t til after that 3-4 weeks I can start therapy, and sitting up starting for 15 minutes a day until it is increased all the way to a few hours. So I may be BACK in this same facility for a few months after surgery. It. Isn’t. A. Fast. Recovery. Yes, in the grand scheme of things a year is nothing, but we are NOT promised another day.

 

Things I’m looking forward to in the coming months because this has been a lot of negativity and I didn’t even touch half the points I wanted to make: God showing me my path of recovery did mean something to not only me, but other humans, being able to be in my chair for a longer period than a few hours without feeling guilty I broke the rule, a home-cooked meal (at this point Kraft Mac n Cheese is acceptable), no curfew that I need to be back before midnight, Justin Timberlake concert in September, Ed Sheeran in October and being home for Christmas next year, going back to Nashville because I miss it dearly and realized what great friends I left behind and how few I have in Wisconsin, to not have to worry about my hair for the rest of my healing process, and the most important one – to pet a dog. Somehow whenever there’s a dog visiting here I miss it by five minutes or I’m in a treatment. It’s a terrible chain of events.

 

Speaking of dogs, I blame a dog for my favorite song right now. I listen to the radio to make myself feel like I’m still part of the world, listening to people talk about events NOT in these four walls or worried about what my blood pressure or my temperature is today. My favorite song on the radio that makes me smile INSTANTLY is The Long Way – Brett Eldredge. Every. Single. Time. I smile. I think it’s because he has the cutest dog ever and I just picture the dog, but maybe it’s a little bit the sweetness and innocence of the lyrics, and maybe it’s because I’ve grown a liking to Brett Eldredge. Whatever it is, thanks Brett Eldredge for the endorphins multiple times a day (smiling releases endorphins, y’all) and by multiple times I day I mean every other hour because that song is reaching that #1 spot (hopefully) soon. Music is healing. There’s so much research that shows it makes you happy, and being happy makes you healthier and that makes your body want to heal more. That’s my scientific explanation for the day. But thanks, Brett… And I didn’t think I’d thank another Brett since Brett Favre winning the Super Bowl when I was a starry eyed kid.

 

I wanted to thank the people that have absolutely been the best the last few months when they didn’t have to be. Hannah I already mentioned,  Lisa, you get it. Because you were me once, and I made it through this with more positivity because I saw my best friend fight this and live to tell the tale. You are still my role model and I still am cheering you on with every battle every day. Taylor – who has always been the SWEETEST but brings food sometimes weekly but at least a couple times a month and she lives an hour away. Oh, and she helps me get out to concerts and make it back before midnight aka 11:59 and encourages my plotting to meet Justin Timberlake with her in September – it’s gonna happen. I didn’t want to turn into a pumpkin, after all. Natalie, you’re the only person I’ll ever FaceTime looking like a complete troll, and your friendship and keeping me in the loop with what’s happening in town makes me so happy. I really, really appreciate you so much.

 

My grandparents have been super great at stopping by to keep me company when they can, making sure I get to doctor’s appointments – I’m sorry grandpa that I made you walk all that way one time we got lost in Froedtert, and love you for still giving me a hard time even when I’m sick. Grandma I love you so much for all the prayer, unconditional love, supplying food that I’ll actually eat, and checking on me even when you’re so busy yourself. There are so many people I could sit here and thank. My mommy of course who talks to me 7 times a day at least. I’ve never talked to my mother more in my life. I’m just making sure she doesn’t have a panic attack daily. I love my mom. I do. I promise. Thank you EVERYONE who has sent me care packages full of M&Ms and stuffed animals. They’re my favorite things. Just, thank you so much.

 

If anyone has book recommendations, Netflix/Hulu/Amazon Prime recommendations, basically anything to recommend to pass time for the foreseeable future, leave a comment, send an email, send a Facebook/Instagram/Twitter private message… keep me entertained. This is the most I’ve been able to write in MONTHS. It takes a lot of physical and mental energy to write and think this much. I’ll try to continue with little events that happened over the course of five months, but I’m not going to force myself to write if I don’t want to write. I WANTED to share this. I WANT people to understand. It’s a COMMON problem with disability. This is just one story, but I feel it’s an important story.