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RubyRosie

Member
  • Content Count

    280
  • Joined

  • Last visited

5 Followers

Profile Information

  • Gender
    Female
  • Location
    I live in the frozen north
  • Interests
    CraftyAF

Previous Fields

  • MembershipType
    Survivor

Recent Profile Visitors

2,051 profile views
  1. Cap please help I sent you a DM

    RR

     

  2. RubyRosie

    21 - O2ctopus

    @behindthesehazeleyes thanks:)
  3. @behindthesehazeleyes thank you for reading as much as you could. I totally understand the feeling of other ppls stories hitting too close to home. Yes, I know how suffocating small town gossip can feel. And everyone either knows everything or they think they know everything. Sometimes I don't know which is worse - them knowing how bad things are or them thinking that my parents were "just the sweetest" people and couldn't possibly be capable of the abuse I suffered. It's true that other places, nice places, do exist. I think every neighborhood/community has its own sha
  4. I look a lot like my mother. I grew up in a really rural area, the kind of place where everyone knows everyone. So even if I didn't know them, most people knew that I was "biomom's kid." When I was a teenager I used to hate this. It still kind of irritates me, but with several decades of experience, and some blunt stone faced answers to total strangers (more on that some other day) I've learned to deal with it... sorta. It helps that I live hundreds of miles from the little blink-and-you'll-miss-it place I was raised. The thing that bugs me is that it's irritating as fuck how much I hate
  5. So, I grabbed my bag that was next to the door and headed to my sister's car. (For full backstory, read the previous post - #20) I had had a few seconds to throw my wallet, sketchbook, a few pads, pencils and liner pens, and water bottle in a little bag. After the first epi shot they had me on an iv bag and the nurse said she'd be checking on me off and on. The iv bag would take about an hour, and sorry there's no tv. Lol. I hadn't even noticed. I asked if she minded if I drew and could she pls hand me my sketchbook? It started as a sketch of the oxygen monitor clipped to m
  6. After pics, Friday morning. Feeling so much better.
  7. 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. This is a copy/paste from my status update on my profile. 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 t
  8. 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
    1. Show previous comments  1 more
    2. mini.finch

      mini.finch

      Oh my goodness. I'm so sorry you went through that! How frightening! I'm so glad that you're ok. That you were able to get help. My goodness. So so glad you're alright. Take good care of yourself and rest as much as you can!

    3. RubyRosie

      RubyRosie

      @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.

    4. abhaya

      abhaya

      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. 

  9. Omw to the Dr.

    Will update later

    1. Show previous comments  1 more
    2. Field8

      Field8

      Pocket riding

    3. RubyRosie

      RubyRosie

      @mini.finch @Field8

      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

    4. mini.finch

      mini.finch

      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!)

  10. Fun with glitter.

    RR

    Screenshot_2021-02-02-20-23-34-1.png

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    0201212034a-1.jpg

    1. Show previous comments  3 more
    2. Capulet

      Capulet

      My favorite is the bottom-most picture.  As always, beautiful work! ❤️ 

      Nice to see you!  Hoping you've been doing okay these days.

    3. BrightSide

      BrightSide

      Oh Ruby Rosie, they are beautiful and mesmerising thank you for sharing 🧡

    4. RubyRosie

      RubyRosie

      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

  11. 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

    1. Show previous comments  1 more
    2. Field8

      Field8

      Pocket riding with you.

    3. BrightSide

      BrightSide

      Im sorry your struggling and feeling low,  I will pocket ride with you on Thursday I hope the new specialist listens to you and has more experience to help you 💗

    4. RubyRosie

      RubyRosie

      @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

  12. 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

    1. MeBeMary

      MeBeMary

      Happy New Year, RubyRosie. Wishing you the best for 2021 and beyond. :throb: 

    2. AKB

      AKB

      Happy New Year to you too @RubyRosie. Sending you warm wishes for a lovely 2021. 💜

  13. 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

    1. Show previous comments  4 more
    2. 8888

      8888

      Pocket riding if it's not too late!  Otherwise thinking of you.

    3. RubyRosie

      RubyRosie

      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.

    4. RubyRosie

      RubyRosie

      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.

       

      Just now Edit Options Report

      RubyRosie

       

       

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  14. 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

    1. Show previous comments  4 more
    2. RubyRosie
    3. RubyRosie

      RubyRosie

      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

    4. BrightSide

      BrightSide

      Sending safe hugs if you would like RR? :hug:💛 B

  15. Hi All, I am most often on mobile too. Often with no access to a "real" computer. Using chrome browser and also have no option for notifications or messages. One new thing that I do like is the "unread replies__________________" line that conveniently remember where I last read from. Thanks @BrightSide for setting up that thread. Goodness I've missed you all so much! RR
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