Visiting Urgent Care with Dysautonomia

Being sick sucks. It sucks more when you have dysautonomia.

Think back to the last time you went to urgent care (or Terem for my Israeli friends/family). It was probably a fairly easy visit. You probably explained your symptoms, told the doctor how awful you felt, maybe some tests were run to figure out what's going on, and then you were probably sent along your merry way.

When I go to urgent care, it's never really an easy visit.

First, I have to explain that I have an auto-immune disease that messes with the lining of my bladder. Then there's the ulcers in my bladder...and also the ones in my stomach. Next comes explaining dysautonomia. I usually get a blank stare from the doctor or NP and then I get to explain how all of it works and ties together.

Case-in-point: last week I went to urgent care for a UTI and a kidney infection. I explained that sometimes, with Interstitial Cystitis (the auto-immune disease that messes with my bladder lining), it mimics a bladder infection but I didn't think it was the case this time. And my kidney was hurting...and the doctor almost missed it if I hadn't reiterated it. Then I started explaining that I have dysautonomia and that messes with my whole body. So I was nauseated and in a lot of pain but that's also fairly normal for me.

I spent 20 minutes talking to this doctor before having to explain that I'm also antibiotic resistant thanks to having so many bladder issues as a kid. See kids, in the 80s, it was common to put children on a course of antibiotics for an entire year when they thought kids had chronic bladder infections. Urologists didn't seem to understand WHY kids, like me, got bladder infections so much so the best thing to do was prescribe medicine. By 35, there's a list of meds I can't take now because they won't work. Amoxicillin and Bactrim are two of them. Before being prescribed any medication, I always ask about the side effects because I'm not your normal patient - I'm prone to feeling like crap with medicine. So I like to know what I'm in for and I was told antibiotics are pretty much all the same when it comes to side effects: gastric pain, diarrhea, and nausea. Lies.

I was prescribed Cipro, which I've taken before but not since getting diagnosed with dysautonomia. Two days into it, I had to call the doctor again because my heart felt like it was going to explode and I couldn't stop sleeping...and vomiting. There was also joint pain and muscle weakness that made me feel like I had the flu but with no fever and no shot of feeling better. I was prescribed Keflex in place of Cipro and the main side effect, for me, is a headache. For two days I've had a headache - sometimes it's worse than others. The headache causes nausea, which causes me to not eat because I'm afraid it's going to make me throw up...which in turn makes me more nauseated.

This is what it's like battling what doctors call a "simple" UTI when you have dysautonomia. It's not so simple and infections like this can leave you debilitated for days. Sounds awesome, right?

The moral of the story, kids, is to appreciate your health. As you're giving your thanks on Thursday, don't forget to be grateful for your health because not all of us are so lucky to bounce back from "simple" infections.

The November Drag

This has nothing to do with the November Drag. It's just funny.

About a year ago, I publicly told anyone with Internet access how I was diagnosed with dysautonomia. Then I started this blog. I update it every once in a while. It's usually just a place for me to vent and for people, like me, to feel more normal. When I first started researching this disorder, I was stumped for information - I couldn't find any first-person accounts on how people lived with this stupid disorder.

Fast forward a year, now I'm part of a community of people who share their stories. I'm also able to reflect on how I felt a year ago. One thing that sticks out is that I always feel like shit in November. Always. Fall used to be my favorite time of year. Bring on the pumpkin spice lattes! Now it brings on pain, too many work from home days, and nausea. SO MUCH NAUSEA.



I call it the November Drag. This month drags on. This time it's even worse because I'm being weaned off of a lot of my medicine so my symptoms now include:

• daily headaches
• a throbbing ulcer
• waves of nausea
• sinus pain
• neuropathy in my hands and feet
• lack of appetite
• bouts of gastroparesis
• dizziness
• foggy-headedness
• depression

Sounds like fun, right? This is the story of my life.

Here's one thing you need to learn about me: I suck it up. I do. I suck it up and work through the pain. I do my hair and makeup, get dressed, and usually go into work (or work from home if it's really really bad). It has to be really really bad for me to work from home. I have to be near hospitalized for me to actually take a day off. That's right! I can be throwing up and dizzy and still work...from home. I push through the pain. Not every does. That's just me. I'm a-typical and I have a very demanding job.

But this November Drag, let me tell you, it's awful. The nausea is probably the worst for me. I can handle the rest of it but the nausea is so debilitating that it makes me want to crawl into a hole and never come out. Imagine having the stomach flu 24/7...and that's what it's like for me. 

Then the depression sets in, even though I've come to terms with my illness. I'm depressed because I hurt, and because I have so much work to do and little energy to get it done. Imagine how much energy it takes for you to feel well when you feel like shit...and that's me on a daily basis. And I have to work and take care of my family on top of it. I'm grateful when my husband can step in and help (which he does often) but I don't like feeling like an invalid. 

So I suck it up. And I work. I get shit done. I move because moving is supposed to make you feel better, even though it hurts to move. 

It'll be December soon and maybe my body will hurt less. Maybe. But, for now, I long for the days of summer when I felt fairly well. 

Making Peace with Myself and Where I Am

A friend of mine from college has always been around when I need her. We're not the best of friends but when we need each other, we are there for each other. When she knew I was moving back to Israel, she went to bat for me and tried to get me a job. When she was moving back to the US, I gave her access to my remote job site. We vent to each other on FB. Recently she created a community where women can help each other. She became a life coach and she helps women, like me, reach their potential, and she deserves every penny she earns. She's amazing!

So why am I telling you this? Because I feel a little broken. I'm overworked, tired, and a little spun out of control lately. I work too much, don't take enough time off, and I don't take care of myself. I came really far this year - in my health, in my learnings in my career, in knowing my own potential - but I've taken a few steps back in understanding my own worth, too.

This is where my friend comes in.

I asked for some daily affirmations on abundance and she asked if I wanted her playlist on money. Sure, why not. It can't hurt. But in all this listening, one message stood out:

MAKE PEACE WITH WHERE YOU ARE!

Holy shit. I needed to hear that. I was in a tizzy last week. I felt like crap. I'm eating horribly, not drinking enough water, not sleeping enough, I'm stressed out and I'm not happy but I needed that light switch to go off. Why? Because I've made leaps and bounds compared to where I was last year. In 2015, I couldn't think about having a kid in the year ahead. I couldn't think about moving ahead in my career. I just couldn't think about these things because I was too sick both physically, mentally, spiritually, and religiously. A lightbulb went out. I'm actually at peace right now. Sure, I'm frustrated with things going on but this is where I'm supposed to be. There's some kind of lesson to be learned and I need to learn it before I can move on to the next level.

Being at peace doesn't mean I can't learn more and it doesn't mean that I can't shift my focus - so that's what I'm doing. I'm shifting my focus - from negative to positive. I want more money, so I will make more money. I want to eat better, so I'll buy better food. I want more well behaved kids, so I'll treat them better. Treat those like you wish to be treated, give and you will receive. 

I need to make peace with my illness. I don't know if I'll get better and I don't know if I'll ever get back to where I used to be - this is likely the new me and I need to make peace with it. I guess that's part of being human - always evolving and always making peace with life. 

Anyway, start making peace with you and where you are.