[picture of about 10 bags of coffee, aeropress, and grinder]
So I had my first true #mcas flare. I was on vancomycin for a suspected line infection, and though I was reacting to it, the reaction wasn’t bad enough to take me off (especially since I haven’t needed antibiotics since my mast cell activation disorder got bad, and they’re worried about picking one I have a worse reaction to). Anyone who knows me knows my obsession with coffee. Black coffee is a clear liquid, and between aspirating and intestinal failure doesn’t tend to be a problem (as long as it drains right away from my G tube). Plus it lets me get a lot of flavors I couldn’t otherwise (because of allergies-chocolate, for example). Well, about a week ago while still on vancomycin I started reacting to coffee. I was devastated because whenever I had reacted to things in the past, that was it. It took three days off the vancomycin, but thankfully I’ve been able to do coffee again (and mango, same thing). Hey universe: DON’T SCARE ME LIKE THAT! 🤪😛☕️☕️☕️ Mmmmmmm. As you can see, I have a lot I need to drink up...
A quick tbt to my second spinal fusion. My mom thought it would be hilarious to bring a cardboard Harry Styles into the ICU (it was). To get me to walk they convinced me Harry was waiting for me in the hall. In my drugged up state I shot up and basically zoomed out there only to find out that the real harry Styles was in fact, not there. The nurses did say that they hadn’t seen anyone get up that quickly from a spinal fusion before so I guess you can call me the Usain Bolt of spinal fusion patients????
6 696 days ago
Tomorrow marks one year since I had the immense privilege of going to SNL and sitting in on a weekend update writers meeting (!!!!!). When A Wish Come True came to my house to help me figure out my wish, I assumed getting to go to SNL would be a long shot. I chose to “shadow” my favorite comedy writer/stand up, @colinjost, who had previously been head writer, is an update co anchor, and wrote a movie that my friends and I love! I was given a tour of studio 8H and got to meet a few other update writers, and then we were given tickets to the show! This photo is pure happiness on my face.
Although I spent the day with a subluxed shoulder, sore hip, and two broken titanium rods; being able to see the institution of SNL up close and meet with so many kind, humble, and hilarious people was enough to keep my mind off the pain for a while. It also gives me something to look back at on my bad days.
I’m forever grateful for A Wish Come True RI and SNL, particularly @colinjost and the lovely Lindsey Arenburg, for giving me an experience I’ll never forget and an inside look into a show I’ve dreamt of working on since I was 10. 💙
(Also I had a serious case of the moon face in that first photo. Fuck you prednisone!!!)
Had such a fun night with my high school pals. We laughed, drank wine, played board games and did face masks. Even after not seeing each other for a few months it felt great to pick up right where we left off. We were basically just sitting around, but unfortunately at some point in the evening, my shoulder was like “nah ✌🏼” and decided to slip out. My hip was also like “I’m outtie 5000” and subluxed as well. Maybe it was the position I was sitting in, or the histamine from the wine causing a mast cell flare (which equals looser joints). Whatever the reason, it fucking sucks.
My saint of a mother picked me up at 1 am so that I wouldn’t have to suffer a sleepless night in somebody else’s bed. I’m devastated because I was having such a good time and then BAM, subluxation. I’m used to the physical pain of it at this point, but the emotional distress is going to take time for me to accept. Sometimes it feels as if everything fun comes with a price.
Love my friends for being so supportive. Next time we will have girls night at my house so I don’t have to worry about leaving 🦓🍷 PS this pic isn’t a great angle because it’s hard to snap a pic with a subluxed shoulder but it’s pretty damn forward :(
5 337:20 AM Dec 7, 2018
Let’s talk about KIDS!
Growing up, I always knew I wanted to be a mom. I’m naturally a very nurturing person and started babysitting at a young age. Luckily I’ve been surrounded by plenty of little ones, between my cousins and neighbors there are a lot of kiddos who bring me joy.
Between my full fusion and my EDS, it seems unlikely that I’ll ever be able to have kids of my own. This is something I am working on coming to terms with.
With chronic illnesses, especially genetic ones, the possibility of passing down your condition to a child can be daunting. I would never discourage anyone from having children, of course, but personally I feel like I couldn’t bring someone into this world knowing that there’s even a chance of them dealing with a painful condition. (I don’t say this to throw shade at anyone with a chronic illness who does choose to reproduce, these are just my personal views and I accept and respect all others!)
Luckily with every door that closes, another one opens. As of right now (and things may change, I’m only 20) my plan is to adopt. There are so many children around the world who need homes. Maybe the fact that I can’t have children of my own is a blessing in disguise.
If you have a chronic illness, what are your feelings about having kids? (Pictured are my cousins and my neighbors)
Having a rough pain day. A terrible shoulder dislocation put me in the ER. While the dislocation itself was painful, the hours of doctors trying to reduce it was truly unbearable. It will take a few days to recover and become somewhat functional. If I haven't replied to your message, I will get to it as soon as I can. .
To my fellow #hypermobile friends, while reducing a joint is incredibly painful, you should consider remaining conscious instead of being sedated. You should to be able to communicate with the doctors, because they will often injure another joint while trying to fix the first one. (They have dislocated my ribs and wrist trying to fix my shoulder.) Aside from narcotics, ask your doctor if it's possible to inject lidocaine into the joint to lessen the pain, as well as injecting valium into muscle spasms that are holding the joint in the incorrect position. Finally, once your joint is reduced, think about whether or not braces or slings may put pressure on other joints, i.e. a sling may cause issues with cervical vertebrae.
1 454:16 AM Dec 4, 2018
It’s #WorldDisabilityDay and there is one main point I feel needs awareness: disability manifests in a variety of ways that aren’t necessarily visible. If I’m not in the hospital for the umteenth time, if there is no tube plastered to my face, if I am not using my wheelchair and my central line is out of sight, then my disability (like many others) isn’t always evident. The abilities of the disabled change. For example, one moment I might be playing basketball, yet
unable to navigate to the bathroom without assistance only hours later. These variances do not deem a disability any less real. So, the next time you witness a person stand from their wheelchair, or witness a seemingly “healthy” body occupying the handicap space, spare us the judgement. No, it isn’t a miracle. Such actions simply depict the diversity, uniqueness, and unpredictability of disability. ♿️
Andddd...the barium saga continues a week later. 😳😂 After my GI appointment this morning, another xray confirmed that the barium from my small bowel follow through is still hanging out as happy as it pleases in what remains of my colon. Crossing my fingers that this will resolve without hospital intervention because I’ve been pretty miserable. 🤞🏻
I’m really f #$*ing pissed off. My doctor thought I might be leaving today, so they didn’t bother to order TPN for tonight. “Hey, why don’t you come to our hospital for care! We’re sorry though, we can’t feed you while you’re here, but that’s ok because you’ll only miss 2000 calories each day - which you’ll be unable to make up.” F$* #ing doctors.
And just to rub it in, they automatically brought me a tray of clear liquids that wasn’t vegetarian (beef broth) and everything else on it I can’t have due to allergies. This was right as my alarm for starting TPN for the night goes off. I can’t keep it together any more tonight. I hate this place so much. I doubt I’m going to be able to come here again, there’s just too much trauma from the medical ‘care’ they offer. If I had somewhere to go tonight, I would be out of here AMA in a heartbeat. Instead I’m crying in the fetal position in bed. F$%^ this place. 😞
13 304:29 AM Nov 30, 2018
Apparently, I posted prematurely this morning. More results on the cultures came back, and it turns out both sides of my line are growing bacteria and now so is the culture directly from a vein in my arm. Basically the bacteria is in my line and in my bloodstream now. It also turns out to be a slightly different bacteria than we thought, but one that still shouldn’t be aggressive. This could explain why, despite having bacteria in my blood, I don’t feel/look sick. I’ve been on vancomycin (which despite the severe MCAS I seem to be able to tolerate) while here, and they’re going to be sending me home on it for a total of three weeks of therapy. The problem is they couldn’t get everything set up today, so I have another night sleeping here. In a week or so we will repeat cultures and see if the antibiotic is working. If so, stay the course. If not, they’ll have to pull my line and put a new one in. Here’s hoping the antibiotics do the trick.
We did manage to do a tube exchange in interventional radiology this afternoon without any problems. They even put in a slightly bigger diameter tube so that the hole (stoma) doesn’t leak as much as it has been. I had sedation for the procedure, so it was a piece of cake for me. New tube in place and thankfully no pain. Let’s see how long this one lasts. My body seems to digest the balloon on feeding tubes in about 10 months. I think it’s protesting the lack of food (even though that’s it’s own fault). Bodies: you can’t take it with you, so drive it like it’s stolen... 😜😂
I can’t wait to get out of here and back to my new apartment in Windsor. I’ve had the keys for over a week, and I still haven’t slept there yet! Thank you again for all the love and support! It means so much to me, and helps me get through everything. 💜💜💜💜
Last night in the ER was an absolute mess. They couldn’t seem to get my medications or the story of what was going on right. I was admitted to the hospital so we could figure out what to do about the positive repeat blood cultures. Once I got up to my room, things finally started getting sorted out and going a bit smoother. They’ve kept me on antibiotics, and we’re waiting to see what the infectious diseases doc thinks we need to do about my central line.
I woke up this morning, and my J tube was a little sore. I didn’t think much of it until the tube caught on my hand and was pulled on slightly. I lifted up my shirt and saw this had happened. At least it didn’t wait to do this until I was home again. Now surgery has to stop by as well to figure out what to do about my J tube. The balloon doesn’t want to go back in, but at the same time I’ve been thinking about having it pulled for a while. The adventure continues.
Here we are again. I was in the ER Saturday with a fever of 101.9 F. Viral cultures came back positive for a viral upper respiratory infection, and it didn’t look to be coming from my line. They had done blood cultures just in case, and told me to follow up with my primary.
I saw my primary care physician yesterday, and was shocked that one of the cultures had come back positive for a bacteria that often just means a contaminated culture. We repeated it to make sure, and the second came back positive as well, meaning it probably wasn’t a contaminant, and that the bacteria was likely from my central line. The ER called me with the results, and told me to come in to be seen.
They are admitting me to the hospital and starting antibiotics for the infection. So far there are no indications that I am in sepsis, so the infection seems to be just the line. We’ll see where we go from here, but my guess is they’ll need to pull this line and do a new one. One thing after another.
The doctors ended up not doing the contrast CT. Although the rest of the team agrees it’s worth the risk, radiology blocked the CT being that the contrast is on my allergy list. We went with the small bowel follow through using barium because it is less likely to provoke allergic reactions. If that does not give the answers we need, then we will do an MRE next. So far, I have not had any significant reactions that additional rescue meds could not fix. The typical time for a small bowel follow through is 1-4 hours. However, I am at 11 hours and counting. The barium has not even had to pass through my stomach or duodenum like for a normal person, as it was administered directly into my jejunum via j tube (and it does not have to travel through my colon), but they still stopped the test until morning since the barium is just sitting there. Let’s hope it lends some insight as to where this infection is originating from! At least I get neat-o pictures of my insides throughout the process.
Here I am. After an exact week since the last post, they operated on the retina. The operation was quite strange, I imagined it very differently.In many without Eds, told me that it was completely painless, but usually those who do this type of surgery have a good resistance to anesthetics, which I do not have, and does not have the whole hole pierced.Yes, because I believed that the perforations were only two, one in the right eye, the other in the left.In reality, the right eye had more than one, but the left really had so many. The laser pulses should have been about 100 per eye, in the right eye they were 84 and in the left eye about 220. Some points of the left eye, especially those close to the afferent nerves were painful (probably due to the mild effect of anesthetics) but fortunately nothing unbearable.The Doctor was very kind, very helpful and sweet, wanted to make me wait to make the left eye, but saw the danger of detachment of retina I decided to get them both today, to take a weight off and an appointment less next week. Unfortunately as expected it will not be the only operation that I will have to do, because over time the retina will pierce again and even the work performed today will tear.But I'm happy to have acted as soon as possible to avoid big disasters. I still do not see well and I do not really know if the sight will improve or if it will remain as a result of the laser, but as soon as possible, when I feel better, I will reply to everyone! Thank you so much for being close to me on this day❤️I leave you with a picture of this morning, where I had cat eyes😂
ITA: Non ho potuto fare due didascalie in Italiano-Inglese, Instagram non dava altro spazio.Comunque sto bene, la retina sinistra era messa malino, e ancora non vedo bene, non so se per effetto del laser o se per una situazione definitiva.Presto risponderò a tutti, dopo essermi riposata, in teoria non potrei nemmeno scrivere questo post🙄Vi ringrazio per essermi stati vicini ❤️❤️❤️ #picoftheday#instalike#instagood#instadaily
Don’t you hate it when you go to a concert and a protest breaks out? I know I do, but when you can’t get to your seats due to major accessibility problems, something has to happen. I went to go see @sweethoneyintherock with @carrieannlucas at the Boulder Theater, and was really excited for the show.
To get to our seats we had to go down an aisle with steps. Out comes homemade ramp that was about 5 feet long, which we were told was ADA compliant. The house manager said that we should have called ahead, and when Carrie Ann explained that she had called more than once and was hung up on, the house manager offered to seat us in the accessible seats. He said tickets for the seats weren’t available online, and that we had to call the box office to get them. -
The pair of accessible seats were up against the bar, partly under the bar top, directly behind the tech booth, barely wide enough for one wheelchair, and at the back of the auditorium. We explained that the seats wouldn’t be accessible to us as bar was playing hell with my alcohol allergy, and that Carrie Ann wouldn’t be able to see the sign language interpreter that was part of the group. He then offered to seat us directly across the aisle, ignoring that the same problems existed, and when he became less congenial we asked to speak to upper management.
By then, Carrie Ann and I were blocking the aisle because we couldn’t get to our seats. The house manager started accusing us of being a fire hazard and then of trying to run into patrons as we tried to move. I went to the aisle on the other side to block it as well, as they had stopped trying to work with us.
After almost an hour, some of the other patrons at the theater started to yell at us to move, while others yelled not to. Boulder Police had shown up, and told me that Carrie Ann was talking with management. She had moved from the aisle and I did the same. Management had refunded the cost of the tickets, but no other solution had been reached. In the end I did not get to see or enjoy the concert. I was surprised Sweet Honey In The Rock didn’t acknowledge the protest that we know of, and hope they just didn’t know.
A grainy, cool upper GI #hospitalglam for a grainy, cool Thursday morning ☢️🎞🌥
3 1343:30 PM Nov 9, 2017
Living with Ehlers Danlos Syndrome, the disorder affecting ALL collegen in my body, controls my life.In 2016 the Syndrome ground my life to a complete halt.
I was housebound, some days bedbound for the 1st year and only came out into the world in 2018, thanks to my mobility scooter & the little strength I've gained from my physiotherapy/stim dancing at home.
Yesterday I visited my Nanna, feeling unwell & fatigued but determined to make the afternoon visit. Today I am really suffering; my face is swollen, lymph notes & glands in pain, fatigue & larthery to the max and I worry my Glandular Fever may be making an unwelcome return.
I get constantly ill all the time; be it from bugs & viruses or my joints subluxing, being incapacitated by my endometriosis pain or struggling to stay concious due to my heart & blood pressure or my circulatory system playing up.
Living with EDS means that each time I do ANYTHING, I'm met with the shitest lottery of ailments, illness & injury.
It's times like this I get very low - I have so much to do with Agony Autie, so many people to meet, speak to & hopefully help one day.
But I'm needing to take the next few days (more time!) to rest away from Agony Autie & figure out what my low-immune system is now trying to recover from; I can't stress how terrible I feel I know I'm fighting something gross.
My condition slows me down. But I need to remember how far I've come in last two years.
21 3945:17 PM Oct 7, 2018
14 years. That is how long it took to receive the diagnosis of Ehlers Danlos Syndrome. The excessive crying, projectile vomiting, and an arm dislocation as a baby were dismissed. As the condition progressed, the bruised sensation between my ribs and general body aches were only “growing pains” and “fibromyalgia” according to medical professionals. The GI symptoms that eventually became severe enough to require tube feedings and TPN were, at first, the result of a healthy kid who “just needed to use the restroom.” Later, all of my ailments were “anxiety,” an “eating disorder”, or “psychosomatic.” •
EDS is a rare, genetic illness that is often invisible. Patients with EDS like myself go years without a diagnosis. It was a long, arduous journey to find a doctor that cared enough to not jump to conclusions and to find out why my body was failing on the inside, yet outwardly I appeared completely healthy. •
After 14 years, my entire life made sense and I finally had answers to all of the “why’s” - why the other kids in grade school pointed at my bendy arms resting on the desk with a mocking “ewwww,” and why I was also suffering from the EDS comorbities ( #Dysautonomia, #MastCellDisease, & #gastroparesis). •
@mind_body_eds is working on a soon to be revealed project, but needs help with a visual campaign by posting a picture with the number of years it took to obtain an EDS diagnosis. It is great awareness for #EDSawareness month too!
• 📷: @theredfishgirl
51 8976:27 PM May 10, 2018
THIS IS MY APPROACH TO CHRONIC ILLNESS 🤗 "Sometimes there are no words or inspirational phrases. Sometimes there is only patience and the willingness to try again tomorrow." For once, I don’t really have anything else to add!
Illustration @bodytobodyproject. Poetry @prosebykailene.
☀️10 Luglio 2018☀️ Data da incorniciare😂 Dopo una marea di dolori, pure io son riuscita ad andare al mare! Yay🎉 Ora, visto che son spezzata in due, per 4 ore di mare di ieri, cazzeggio postando foto, con la speranza di battere il record dell’anno scorso, di sole 3 volte in cui sono andata al mare🤞🏻🤦🏻♀️😂 Foto 1: credo di essere VIP/cerco di non cadere in acqua
Foto 2: sembro una sottiletta🤔 #ehlersdanlosgrrrls