RubyRosie
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Status Updates posted by RubyRosie
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TW - I went to the ER with a bad reaction to a new med. It was really quick how it happened and I was mostly calm during it, but I am still just kinda processing it all. It's probably the closest I've been to death myself.
So, I had to go into the ER on Wednesday. I had a delayed onset allergic reaction to the humira shot from the week before.The rest of this story is pretty bad, but I'll just leave it up to you to decide if you want to pause here and read more later or what. I don't want to add to your stress, but I also went thru a pretty big thing and I feel like I'm close enough to a lot of you that if we were in the same town I'd definitely have already called you yesterday to tell you what happened and that I'm ok. Tired and sore and frazzled, but ok.So there you have it ('it' being your opportunity to read this sometime later if you want, or not at all, your choice).So I had my first humira shot on Thursday the 18th of Feb. It wasn't so bad. Within a couple of days I noticed that my hands and feet were less swollen and painful. I could make a full tight fist with both hands by the end of the weekend. Shit was going good.Then, 12 days later, at like midnight Monday night/Tuesday morning I noticed my belly was itchy and the place I had the shot was about 3in across and very pink. I took a pic of it, rubbed some benadryl gel on my belly and went back to bed.On Tues all hell broke loose. I called the rheumatologist and then the pharmacist. Was told to start taking benadryl pills every 4 hours (not to exceed 400mg per day!), and watch for signs of airway constriction. Call 911 or go to the ER if that does happen.Tuesday sucked. I was covered in hives practically all over. It was definitely more rash than non-rash skin by lunchtime Tuesday. I couldn't put anything on the broken out skin because I was told that it would be dangerous to add benadryl or cortisone on the rash and less effective to doit topically than orally, which was working more on my whole system. My cheeks were puffy. My shoulders were covered in red hives.Wed was rough. Everything was just so fucking itchy. More than half my body was covered in dark pink and red hives. By just before lunchtime my cheeks were red and swollen so I could feel my pulse in my face. And then at lunch I couldn't swollow right. This was the line I knew that I didn't want to cross.I called my sis. She was on her way home. If she hadn't picked up my next call would have been to 911. But she picked up. It told her about my throat. I called to give the er a heads up that this was happening. So they'd know to expect us. It took like 10 min for her to get here and then we took off for the hosp. By the time we were a block away from the hosp I couldn't breathe through my nose. It would make a tiny squeek noise when I tried to close my mouth and exhale. So I opened my mouth wide and tried to take slow deep breaths. As my sister was pulling into the ambulance bay I could feel the choking feeling. It was hard to breathe through my mouth even.The nurses met me with a wheelchair and the doc saw me like a minute laster. He went through the listen to my heart and breathing thing. got a wooden stick and loked in the back of my throat,Then started explaining that really the only treatment for this was an epipen, that's the treatment, in a kind of calm but explaining why this was necessary. He didn't have to talk me into it. I interrupted his explanation and said "I'm sold, let's do it" in a really shakey raspy voice. He said "what?" He nodded toward the nurse who took the cue to run out of the room. She said "she's in." as she headed to the door. He asked me about other meds, did I have recreational drug use, heart problems and looked at my throat again.The nurse came back a few seconds later, she got my thigh alchoholed off and gave me the shot in my thigh. Then she started an iv, took blood for labs, and gave me some kind of iv med that was supposed to be an antihistamine and made my mouth taste like licking a cast iron pan.Then thy asked me how to spell my name and all the questions for registering. Lol.Ffwd almost 4½ hrs later and I'm well enough that they sent me home. Still covered in hot pink hives, but with a total of 2epipen injections and 2 liters of saline and IV meds for allergies and to stop nauseous feelings. I could breathe!Yesterday I was pretty out of it. My sis stayed to help me. Today my hives are just faint pink color. Feeling shaky. But that's normal, at least that is what they told me. I'm seeing my regular dr next week.I'm probably going to post a few pics on my blog. Nothing gruesome or genitals, but just a before the ER pic and a Friday morning pic.I feel so fucking grateful to just be able to breathe. My throat is so sore. It feels like I was choked. The doc said it will feel like that for a while. Because I was choked. The tissue damage done by the anaphylaxis feels like an angry hand crushed my windpipe. I look in my mouth with a flashlight and a mirror and I can see the bruising in the back of my mouth. My eyelids are covered in tiny little dark purple pinprick bruises from the burst capillaries.And I'm still in shock.Thanks for reading this.RR- Show previous comments 1 more
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@Field8 Thankyou. Yes, the er doc wrote me a prescription so I'll have 2 epipen s to keep with me in case I should need them.
@mini.finchthank you. It all happened so quickly that I was kind of in shock. I think I might still be. Yes, I'm going to need naps and tea.
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Oh my goodness, that sounds really terrifying, but also that you really did an amazing job staying focused and calm when it was needed. I'm so glad you're doing better and made it through. Hopefully there will be other options to address you medical need that won't put you at risk for a similar reaction.
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Omw to the Dr.
Will update later
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Thank you both so much. I didn't get home 'til really late and I'm so very exhausted today. The new doc seems nice. I had a bunch of lab work. if the results of that are like the Dr is expecting, then he wants me to start on an injectable med. I'm not super thrilled about that (more because it means tanking my immune system, and puts me at higher risk for a of secondary infections, and less about the needles-ive given clients insulin and EpiPen shots before, just not on myself) but I am in the middle of a flare up. I told this doc that I miss going to pool therapy three times a week, I miss hanging out with the lil old ladies. That I'm doing zoom physical therapy now, but it isn't the same. His response was a very empathetic "I know, I'm sorry."
I'll write more about it in my blog later. Right now I'm so flippin tired. But less anxious about whether my new doc is an @hole and more just exhausted with a *tiny* sprinkling of hopeful.
RR
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Thank you for the update, RR! Please rest as much as you can. I'm so glad that the doctor seemed nice. That's already one worry off the checklist.
It's always reassuring to have a nice doc. I hope that if you have to try this new injection med that it will help you. It absolutely has its negatives, but if it helps you greatly with your condition, then that is a huge positive. I wish you the best. ❤️ (And I sure hope that one day soon you can go back to pool therapy with the lil old ladies!)
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Fun with glitter.
RR
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Hi @Capulet& @BrightSide
Thanks for commenting. I'm more stressed than I was before about this appointment tomorrow. Thankfully my sis is going with me. We have to leave at 9 but my appointment isn't til after 3. Ugh, tomorrow is going to suck. Then I remembered that the city we are going to is in a county that has one of the highest covid infection rates and death rates in the state.
I'll let you guys know how it goes. Still dreading literally everything about this trip. Literally. Everything.
RR
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Hey all,
I'm so exhausted. Have a Dr appointment Thurs. It's with a new specialist. I'm hopeful, but.... not really. I honestly don't know if they can even help or if the Drs can even fix whatever's wrong with just throwing another pill at it. Lol that doesn't sound hopeful at all.
Ttyl RR
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@mini.finch @Field8 @BrightSide
Thanks you guys. I forgot that I wrote that update and when I opened AS up this was a nice reminder that I'm not alone.
PT was awful today. I just want to hybernate until spring. But I can't. I have to be strong. I have to do this. I have to do this for me.
RR
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Hey all,
Happy new year everyone. I hope that each of you finds hope and peace and healing in the coming year. May next January find you in a better, healthier place than you are today. Happy New Year friends,
RR
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Happy New Year to you too @RubyRosie. Sending you warm wishes for a lovely 2021. 💜
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Pocket riders please?
Today is my first physical therapy appointment since covid hit. I'm off the charts nervous to be at the hospital. But I need this evaluation. I'm weak and shakey and exhausted. But at least the physical therapist will see me as I am not just at my best. I'm immune compromised, and nervous as hell, so I just called the lady at the info desk at the hospital. She said that as soon as she got off the phone with me she was going to go wipe down the wheelchairs that are near the front desk. Didn't make me feel like an idiot for being so nervous. So thank you awesome info desk attendant! So so much.
I'm so anxious about this whole thing I have a stomachache. Normally I'm a people person, so this level of anxiety feels crazy to me. I feel like I'm losing my mind or I'm germaphobic (I'm not) or agoraphobic (I'm not) or something.
RR
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Hi @8888
Not too late. My evaluation lasted 2 hours yesterday. Today I'm super sore and tired and I just really wish everything didn't hurt so much.
thanks for being here. I'm going to nap now awake for 2 hours and my energy is almost gone.
RR
Will update later. Kindof hopeful kindof scary news.
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Hi @8888
Not too late. My evaluation lasted 2 hours yesterday. Today I'm super sore and tired and I just really wish everything didn't hurt so much.
thanks for being here. I'm going to nap now awake for 2 hours and my energy is almost gone.
RR
Will update later. Kindof hopeful kindof scary news.
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RubyRosie
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Just a quick update. I know there are a few people on AS that I regularly touch base with and I'm sorry if you haven't heard from me lately. I didn't mean to just bail. Im safe but overwhelmed and feeling like just coping with everything is all I can do right now. Physically I'm exhausted all the time. Mentally I feel like the only reason I'm still going is because my niece and nephew are here and they need me. Thanksgiving is in less than 2 days and it doesn't feel like it. It feel like just another loss. I know that's my depression talking, but it's how I feel. And guilty, cuz I haven't checked in in a while. I'm sorry guys.
RR
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Thanks @Capulet
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Hey everyone. I'm still kinda just going through the motions, but a little less numb.
I hope wherever you are, you are safe and well. And if you are celebrating Thanksgiving, you are finding at least one thing to be grateful for.
I'm thinking of you all, scattered all over the earth. I'm sending so much love and support to you. I am grateful for the whole network of you. Every single one. Everyone who is willing to share their story. Everyone who has shared their private hurts. Everyone who has read anything I've posted. Anyone who has taken the time to reach out to me and to any other members. Your very existence give me a bit of hope that there is still goodness in this world.
Truly, when the site was down I realized how very much I appreciate you all.
RR
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Ok, so now that I read that a few times, I dunno, maybe I'm just afraid of trusting more people with my story.
Like -you say your truth and either
1) they don't believe you
OR
2) they believe you...but then they either
A) look at you as a damaged broken thing for the rest of their interactions with you
OR
B) pity you, which is almost worse than just seeing me as damaged. They see me as something that has survived but barely. They say it like it maybe would have been putting me out of my misery if I hadn't survived. They say it like they truly believe that I was dealt a bad hand in this life and my abuse is far worse than they think they could bare. The thing is though, this isn't the trauma Olympics. It's not a contest. Everyone on earth has a "worst thing they've ever experienced." For everyone, there worst thing is the worst. Hearing someone else broke their leg does not make your broken toe less painful.
OR
What I want is
C) to be seen as the survivor I am. To be seen as am equal.
Like I said, this isn't the trauma Olympics, but I'm still scared.
RR
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So...I've run into a little problem. I want to share my survival story. I do. I need to get it out of my head. The problem is that isn't so easy. I have massive anxieties about this whole thing. I'm sure many of you know exactly what I'm talking about because you've felt with them too.
I have trust issues. Being an anonymous voice on ye ol' interwebz does help a bit. Because, why lie when nobody knows you anyways. You all don't really know my name. You aren't in my real day-to-day life. There's a bit of a buffer there. There's a cushion. A layer of protection from how much you could really hurt me. If somebody on this site goes a little bananas on me, I just block the troll and move on. Done and done.
The trust thing I'm having trouble with is this - I don't do pity.
I can't do pity. It makes me feel like a soaking wet stray cat that someone found in a dumpster. It makes me feel like I'm being looked down on. Empathy is fine. Pity makes me want to scream. It makes me feel like a child.
Add to this that I had a brain injury and this makes writing and reading really hard. It's difficult for me to pick up on the little vocal and facial cues that I usually rely on to give my brain extra context. Texting is aweful for me. I worry that I'm not reafing it right.
Anyway, so now I'm just sitting here wondering if I should share or not. Because I'm not afraid of trolls. No. What I'm afraid of is well-meaning people saying "oh, you poor thing..."
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RubyRosie - I hear you, LOUD and clear.
From what I've seen and experienced, there's far more empathy than there is pity on this site. We are a community of like-minded folks who are ALL trying to figure some things out for ourselves, and I know I say this a lot - but it truly does take a village. I've found that for me, talking things out (whether I do it in a post or in the chat or in a blog, or a private message, etc) does help because it's truly validating when someone tells me they understand and they can relate in some way, shape or form. I've never gotten 'you poor thing.' I do understand what you mean, though - I don't want that, either. I know there is a lot of "I'm so sorry this happened to you," but that's more on the empathy side.
We understand how it is and what you're going through, so this is a common way for us to reach out in support.
Another thing I love the most about this site is - you're able to take it at your own pace, so there's never, ever, EVER any pressure to share anything that you aren't okay with sharing for the moment. Trust is something many of us struggle with and it's truly important that we remain cautious and wait until we feel we might be ready to share. Whenever that is for you, know we're all here and we'll listen. ❤️
Have a great day,
Cap -
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Hey everyone,
I don't really know what to write here, except hi. I'm glad I found this place.
RubyRosie
