Stevens-Johnson Syndrome

Hi, my name is DreamingRoe. I have seizures and migraines that leave me feeling paralyzed and helpless. I also have Graves disease and stevens-Johnson syndrome both autoimmune diseases. so I am sick all the time it seems I'm here cause i have still have some hope, I guess. that I'm not alone. that I might get thru it. . . thanks for having me.

#MightyTogether #Anxiety #Migraine #PTSD

Hey there!

Sometimes in life, you are thrown curveballs. Sometimes they hit you in the face and other times you dodge them! I’m here to tell you that you are not alone and that we can fight through this.

When I was young, I was predominantly healthy. From the age of five I was misdiagnosed with multiple Psychological disorders; from being on many different medicines, to being in the hospital suffering from StevensJohnsonSyndrome! Yep, you read that right! StevensJohnsonSyndrome! At the age of 14, I was on a medication called Tegretol. I ended up in the hospital for three months with SJS. The doctors were unaware of this condition, how to treat it and what the longtime risks would be. I not only had external effects, but I also had major internal effects. When I finally recovered, I started to notice a lot of change in how my body felt on a daily basis. Not too long after recovering, I was diagnosed with Dysautonomia… and of course being a young female, I was totally confused. My biggest struggle was POTS… I dealt with it and tried my hardest to manage, but as we all know passing out on a regular basis isn’t healthy. So I finally met with an electrophysiologist and had my first catheter ablation in 2015. Following this, I was diagnosed with Atrioventricular tachycardia syndrome and inappropriate sinus tachycardia. I’ve had multiple failed ablations and in January 2020, I had an sinus node modification. Finally we have won the battle and my resting heart rate is now lower. Backtracking a little… not only did I face heart conditions following SJS, but I also face Gastroparesis and pyloric stenosis… surgery was a big help! After seeing multiple specialist and going through a long journey of genetics… I have been diagnosed with Vascular EDS, mixed connective tissue disorder, MCAS, and much much more! Needless to say, these are my long term risks from SJS. On a daily basis, I infuse 2L of saline through my PORTACATH that I had placed in 2019. Not only does it help with my POTS but it helps with many of my conditions! Of course, as it may seem, dealing with such a wide range of ChronicIllness and RareDisease, it is almost impossible for me to work and stay active. I worked until the age of 22 and finally told myself that I just couldn’t do it anymore. I applied for disability and received benefits in 5 months! (Yes that’s super unheard of.) Being disabled are the age of 24 has brought a lot of confusion from family, friends and strangers. I get told often that I’m just “lazy”. I understand how that can be confusing, but until someone walks a mile in your shoes, they will remain unaware. I’m here to tell everyone, who is disabled or has a loved one that is disabled… this is a journey of ups and down. Never forget to smile and wake up daily knowing that you can fight through this! #POTS #RareDisease #ChronicIllness #StevensJohnsonSyndrome

Feeling a little defeated today. It marked the 3rd week of Lamotrigine and I woke up with the dreaded rash. My doctor says to discontinue use immediately and monitor it to be sure it's not Stevens-Johnson syndrome, which in itself is scary AF. But assuming the rash goes away without further complications, I'm still left with "What do I do now?" This was only the 1st med I've tried to manage my mood episodes and I know there are plenty more to try out there, but I was really hoping this one would work. Aside from the life-threatening rash thing, it seemed to carry the lowest risk of undesirable side effects. I see the dr next week but until then I just feel like a failure. How many meds did you guys have to try to get the right combo? #Bipolar2 #Bipolar #BipolarDepression #Lamotrigine #StevensJohnsonSyndrome #PsychiatricMedication

Today marks 3 years since I got sick. And that is so heartbreaking to me. 3 years ago I was a 16 year old girl prescribed an anticonvulsant with a black box warning that brought on Steven Johnson Syndrome. And from that day forward nothing would ever be the same.
Nobody told me the lifelong conditions that would’ve remained dormant had I not taken those pills.
Up until that point I was healthy. Rarely got sick, no allergies, no real health complications in my whole life. I don’t even remember what it was like to feel healthy. To not hurt or feel nauseous or be throwing up or passing out or weak or exhausted and drained or or or.
Everyday I think about how I would probably still be healthy if I hadn’t taken those pills. I wish for a do-over. I want my life back. Because this isn’t living.
3 years ago a big part of me died. And now I’m trapped in this body that doesn’t care for me. It feels like much longer than 3 years of illness and lack of answers and struggling and being told I’m faking and feeling crazy and sad and heartbroken.
But there is no redo button. I’m stuck with this. This is my new normal. And I wish it wasn’t, because I am so tired of fighting. So tired of losing the battle.
When I got the notification from 3 years ago I cried. I mourned the loss of my health and the things that fell away with it like friends, relationships, happiness, and so much more.
I wanted to be a ballerina or a heart surgeon or an author or an artist. Now I just want to be healthy. My future is no longer as promising as it once was. And somehow I have to figure out how to live through this.
This has been the worst 3 years of my life. But I have also learned so much. About myself, my own strength, and about those around me. And while I would trade these ailments in a second, I wouldn’t trade what they’ve taught me.
My body hurts, but my heart is full.

My legs have been swelling a lot more than normal and leaking some clearish fluid at times so I saw my gp and just got my lab results. Looks like everything is ok except he wants me to work with a nurse for lymphedema. I don’t need any new diagnoses!! When I saw my gp that day he had a new nurse and when she saw my long list of allergies she asked if they were true allergies or just sensitivities “because with a list this long it rules out pretty much everything the doctors can give you”. While it may be a valid question there was something in her tone that set me off (and my hubby as well) and I began telling her how many meds caused Stevens-Johnson Syndrome and which caused violent vomiting, paranoia, hallucinations, seizures and so on and she says “oh, you’re one of those” in a snarky tone. One of what??! I’m also worried because with my CRPS I can’t stand to be touched on my legs, the left is the worst, and definitely can’t be in compression wrapping so I don’t know what the options are going to be. If they have to touch or rub me in any way I’m going to be screaming in pain at the top of my lungs! Can’t take diuretics. The day I saw him, doc said I had a good 20+ lbs of water weight on my legs and they weren’t that bad. My cyclic vomiting syndrome has been acting up lately. Not started vomiting yet 🤞but beyond nauseated and downing the phenergan. Think it has to do with stress though. All I can say is a lot of huge changes might happen in my life soon. And I’m having a hard time working around my current point in life with no help without knowing for certain if those changes will happen. I saw my mom tonight. Told her about my CVS and she just said “ Don’t start that again” I know what she meant but I don’t have any control over this! September brings my hubby’s bday, my bday, and our 22nd anniversary. I hate the whole month. I can’t stand my birthday. We never get to go on a trip or out for a nice night. Something (me) inevitably screws it up. I’d rather just skip to October and November, definitely can miss Christmas ugh too much stress, and cruise straight into next January from there. Feel a bit better, thanks for listening... #Lymphedema #ComplexRegionalPainSyndrome #CyclicVomitingSyndrome #Anxiety #Stress