chronic illness · chronic pain · crps · ketamine

one step forward, four steps back: small update

Well unfortunately the incredible high of last week’s ketamine infusion has come crashing down in a most spectacular form. After only ONE day home from UVA, I was readmitted Tuesday night and have been here ever since. Some people have incredible luck but your girl Genevieve, she just doesn’t have much luck!

What happened? Well I’ll tell you…

 I left the hospital Monday afternoon after my infusion had finished but noticed I had some upper stomach pain and bloating by the time I got home. I didn’t want to make a big deal out of it so I thought maybe it was some gastritis since I have had gastritis several times over the past few years due to certain medications. I thought it could also just be my body readjusting after being on ketamine for 6 days. By Monday night my stomach was hurting pretty badly and was SUPER bloated.

By Tuesday afternoon the pain was WAY worse and was all over my stomach which I have never had happen before. The pain was WAY WAY beyond anything I have experienced with gastritis in the past.

After calling Dr Kaplan to ask what to do, I was told that it was best my dad take me to the ER incase it was appendicitis or something else that might require surgery.

We waited from 4:45pm until 12 am when I FINALLY was taken back. Yes you read that right, we waited over 7 hours for me for me to even be looked at let alone given help to control the pain and getting some tests done to figure out what was happening.

I have had to go to the ER a few times since first getting sick in 2011 and I have NEVER EVER waited that long, maybe 2 hours max. It was honestly shocking and upsetting, especially since I was obviously in intense pain and also JUST had been discharged from UVA 24 hours earlier. You would think being in a wheelchair would up your odds of being seen sooner but apparently theres NO silver lining of being visibly disabled.

Things continued to not go well once I was seen.

No one could get an IV in me because I have little veins and am always dehydrated. After trying 5x they decided to do one in my upper arm using ultrasound. It was extremely painful and at that point I just began to sob. I was exhausted, in a lot of different kinds of pain, and upset that after having this incredible week of no pain, I was back to my body malfunctioning on multiple levels.

After getting bloodwork, some x-rays, and a few shots of Dilaudid that didn’t help, the ER dr decided to go ahead and admit me. My x-ray did show that I am literally full of shit (which shouldn’t surprise people HAR HAR HAR) but the severity and location didn’t correspond with just simple constipation. Around 7 am I was finally given a bed and a room.

The days all kind of blur together since then.

There’s really been no set game plan until today and for several days, the general medicine team seemed really unsure what was going on but at the same time were adamant that they didn’t want to do any testing like an endoscopy or cat scan (even though they had suggested possibly doing it earlier this week).

In the beginning of my stay the general medicine team kept telling me they were pretty sure my pain and swelling was all constipation but I knew that made NO sense. Thankfully I had some luck because one of the UVA pain fellows who knows me pretty well was kind enough to come to check in on me a few times. He is a great listener (and an awesome dr) and after talking with me, he was able to hint to the other drs that this most likely wasn’t constipation but also either an ulcer or gastritis.

Thankfully the team FINALLY listened to his hints (and mine) and so they prescribed me two meds that have definitely helped my stomach calm down and because they have worked, it indicates that whats going on is gastritis which is when the upper part if your stomach come inflamed and/or an ulcer. I will most likely have to get an endoscopy in the next few weeks to see whether its an ulcer or gastritis since the UVA Pain team has been clear that if its an ulcer, I won’t be allowed to get ketamine for the next 6 months. The idea of that really upsets me but I know I shouldn’t stress out about it until I have a definitive yes or no on the ulcer.

I am so exhausted from all of this, emotionally and physically which sounds cliche but its the truth.

Not being able to sleep both last week and this week as well as barely eating (with lots of daily dry heaving) has pushed me over the edge at times. It’s been hard at times to advocate for myself while at this hospital and I will admit to getting REALLY angry (in private) because at times I haven’t felt like the drs were listening to me or were talking down to me.

It’s honestly been quite frustrating and challenging to go from Dr. Kaplan who ALWAYS listens to me and helps me ASAP to a place where the doctors don’t know me and don’t always say yes to what I know my body needs.

For instance I had a headache on and off all yesterday…

it got a lot worse last night and so around 12 am I asked if I could have something like Toradol (which I had already had 3 shots of later that day). I  Even thogh Advil and Tylenol don’t help my headaches, when I was told no for the Toradol,  I asked if I could at least take a some Tylenol as I was desperate for anything…instead I was given NOTHING. This of course pissed me off so then asked if I could at least have some Trazodone (my regular prescribed sleeping meds) so I could at be knocked out for a few hours and was then told no to that for some bizarre reason!!!!

SO I stayed up almost all night with this headache and around 7 am it went from an unpleasant headache to the WORST freaking migraine I have ever had.

So then my body does what it always does with migraines: I began vomiting bile uncontrollably and could barely open my eyes because light just made the pain worse and the room felt like it was spinning. A few doctors had stopped around this time to see how my stomach pain was and I got hopeful that I would soon get relief. I tried to explain that my stomach was better but I was having a terrible migraine but I could barely get any words out as speaking seemed to exacerbate the throbbing and spinning. Of course the doctors didn’t seem to understand that this wasn’t a headache it WAS A MIGRAINE and kept saying “Well lets do some Tylenol” which made me insane because if you have ever had a migraine, you know that shit isn’t potent enough to calm things down.

I honestly started to feel like I was going to have a panic attack because the pain felt so suffocating and I also didn’t know how to get the drs to give me something specifically for migraines to quickly calm things down. I couldn’t even feel my leg/feet pain because the migraine was so intense (which says a lot).

I was lucky enough to have a really amazing nurse and once he saw me writhing around and puking, he pushed the doctors to give me migraine meds ASAP. It’s taken almost all day but my head finally doesn’t hurt and I’ve been able to eat and keep down a small amount of food.

Best of all I get to go home today!!!

The doctors are satisfied with my reduction in stomach pain/symptoms and are also ok with me going home now that my migraine is much better and I can eat and drink without throwing up.

I know I will feel even better once I have slept well for a few days in a row. It will also be good to be able to take medicine when I WANT to and not wait around for hours for someone to bring it to me. This latest experience reminds me that our hospital systems are still really broken and how many people get stuck in the cogs.

Hopefully I don’t sound super ungrateful or that I am whining, just very ready to have a nice break from all things medical. My poor husband and parents also need a break from sitting around UVA medical day after day, I know my loved ones get very stressed out when I’m here.

 

Soooooo that’s what I’ve been to, how about you?

xogen

3 thoughts on “one step forward, four steps back: small update

  1. Hi Genevieve,
    I can’t even remember how I found your blog, but I have been following you for a few months now. Well, after reading what a crappy week you had I wanted to jump in, and say I am so glad you finally got meds, and are feeling better. Plus, I don’t think you sound ungrateful at all. You handled it very well, and have every right to be mad at a system that doesn’t get it sometimes.

    I have really enjoyed reading about your journey back to walking again. I felt so excited for you when I read that you are gaining some independence. What an incredible feeling that has to be for you! I also, LOVED your post from yesterday with the pretty jackets. You have really great taste. I found myself looking at them, and looking again, and then saying, hmmmmm…would I wear that? That one is really different, but it’s also really cool. I like scarves too, do you?

    I have had so many challenges with my health over the years, I guess thats why I can relate a to your blog. I haven’t suffered physically as much as you do, but in the last 5 years I have had a ton of mental health issues. It runs in my family, and I am pretty sure the extremely stressful life I lived in the military didn’t help. I understand that when we are sick, its about finding new ways to live life, try to be normal, and try to look to the future for better days. And then sometimes its shear survival mode. It sounds to me thats what this week was like for you.

    I think your blog is amazing. No really! I don’t have the courage to tell my story yet. I just started going to a support group, and I was shocked how much it helped me! I also opened up to the 3 closest people to me this year, and that has its challenges, because I know they want to help, but sometimes I also want to slug them for their ignorance about what I go through. HAHA! It’s a process for all of us. I also like reading about your makeup experiences. I fell in love with makeup a few years ago, and have had so much fun learning about how to apply it better, and watching videos about products, and reviews. My boyfriend thinks I am crazy for watching YouTube videos about blush! 🙂
    I hope that you get some sleep, and good food the next few days, so you can get back to feeling better, and working at your goals. I’m proud of you for hanging in there through a horrible week.
    I look forward to your future posts, and will be leaving more comments!

    Lisa R
    Alexandria, VA

  2. All this going on in the world has me jumped up about the patriarchy and dismissal of female experience. I’m sure in your journey toward diagnosis and treatment you experienced the same “female hysteria” diagnoses that I did.
    When I see the gender pronoun of the nurse that helped you get treatment for your migraine, I can’t help but think there was a gender based aspect to the dismissal of your pain. Like I said, I’m really jumped up about these things lately so maybe I need to take off my SJW sweater and reread this, but…
    …Oh, once HE said you were in pain, they took is seriously. Once HE said it. Uh huh, okay.
    I’ve also been in the same situation as you – readmittance to the ER only a day after a discharge. In seeking treatment for my pain I just kept saying “look at the chart, I was just here! The same thing is wrong!!” Like you, I can’t believe that didn’t somehow effect the urgency and procedure. Like, wow, I am reeling over how long it took them to get you in and absolutely furious for you that you were denied your daily medications.
    Thank you for sharing. I am on fire for you right now. I gotta say, it doesn’t feel bad.

    1. Hi Constance, thank you SO much for reading! You know I am not sure what in the hell went on with my last hospital visit. I would obviously like believe sexism didn’t come into play as MOST of my drs were female. What really threw me off is that I wasn’t there for opiates, I have morphine I take every day. I was there because I was told to go by my main dr and because this pain happened RIGHT after an intense infusion. I had very visible swelling so it wasn’t like I came in “oh my stomach hurts” I maybe would understand if I came in with JUST pain since the ER is always skeptical of people with invisible pain. It just was weird and bizarre especially given that I am a visibly disabled woman with a real deal neurological pain disorder…not some faker. Thanks again for reading and being pissed off for me, I made the decision to call the hospital and complain which helps the rage haha!

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