Because it can never be simple

August 9, 2016

The appointment went well. The doctor was great as always: smart, personable, and though always busy, acting like he has plenty of time to talk to me and answer my questions. Yes, I like this guy a lot. His new fellow (it’s a teaching hospital) seemed really good, too. I left with a plan.

The next step went better than usual. Instead of waiting 6 months or more for my 3-month followup, I actually got an appointment in just 3 months! I was told they had hired new residents and that freed up some of my doctor’s time.

I happily went for blood work. They usually stop taking patients at 5:15 and it was 5:20, but they said they were happy to squeeze me in. Good thing I’m an easy draw!

Yes, everything was going smoothly. Until it wasn’t. Because apparently I can never just simply have a good, smooth, simple appointment.

I felt the needle moving around my arm. Then it moved more. It wasn’t slipping, it felt deliberate. I didn’t look – I never do – but I asked what was wrong. The phlebotomist told me the vein was moving away from the needle, and that that can happen with overuse.

Overuse. Sheesh! Well, it was probably true. I’ve gotten A LOT of blood drawn over the past 20+ years since the doctors first took my symptoms seriously. And it was almost always in my left arm, because I have so much more pain in my right. And it was usually in the same spot on the same vein, because that’s the one that pops right out, practically asking to be stuck. So yeah, I could imagine overuse was a possibility. This would suck. I’d have trouble doing it on my right. But what could I do?

She offered to try a different vein in my left arm but I said no, to just do my right. I didn’t like the way that needle had felt in my arm. It had made me a bit queasy. I just wanted this over. Then I felt funny.

Then she was running into the room with water. Wait, hadn’t she been standing next to me? Apparently I’d lost a minute somehow. She was calling out, “Bring me some juice ASAP!” I drank the water. She put a cool wet papertowel on the back of my neck. The room was swimming. My face was tingling. I felt foggy-headed. I drank more. I was having trouble sitting up straight. There was juice in front of me. I drank it. She said my color was coming back. I hate to think how bad I must have looked before that, because I doubted I was looking so hot at that moment. I drank more juice. There was a nurse in the room. A doctor came in. They all looked concerned. Oh boy.

The room was steady now, but I felt a bit shakey. I walked around a bit, because they wanted me to prove I could. Thankfully, this was one of the only times I hadn’t driven to the office; I had taken the bus so I could avoid rush hour traffic going home. I was worn down, but generally feeling better. But I was confused. I wasn’t foggy-headed, just confused. What the fuck just happened?!?

The staff kept reassuring me, saying that this was common. Maybe it’s common to them, but not to me! I was seconds away from fainting and I don’t faint. Ever. Ok, once, but I had lost a lot of blood that day without eating anything and that was 19 years ago. This made no sense! Once last year I had 9 vials drawn as a fasting test and I just felt a little light-headed afterwards. I drank water, ate a granola bar, and was completely fine. I’ve never had anything like this! And besides, she hadn’t even drawn blood!

The staff was great. I left the office after drinking more juice, eating a bit, and promising to eat more when I got home. Good thing I always carry food with me, because all they had was gluten-y food! I wasn’t hungry in the slightest, but I forced myself to eat.I promised them I would take an Uber home instead of the bus. Luckily I had just used Uber for the first time a couple weeks ago, so I had the app on my phone and knew how to use it. The doctor gave me her cell phone number and made me promise to text her so she’d know I got home safely.

Waiting on the street corner for the Uber sucked, but he finally came and we made it home. I was in the office so long that by then, ironically, traffic wasn’t so bad. The minute I got home I pulled off my clothes and put on something comfy, texted the doctor that I was ok, grabbed some juice, and got on the couch for some light tv. After several hours of lying down, watching tv, and feeling like crap, I suddenly started to feel better. Thanks to my chronically ill body, of course, I still felt fatigued the next day from the whole experience, so it took another full day of resting on the couch before I felt decent enough to leave the house. And then finally I could think about all of this.

The phlebotomist, nurse, and doctor who had crowded around me all mentioned something with a “v” that I couldn’t remember. When my doctor and his fellow heard about what happened, the fellow called me. We talked for 20 minutes. She felt it was most likely a vasovagal response. Ah hah! That was the “v” word the others had used! Today I saw my naturopath for a checkup and she also felt I’d had a vasovagal response.

Basically, it’s the body overreacting to a trigger. Often the trigger is the sight of blood. The sight of blood doesn’t phase me in the least. The feeling of a needle moving around in my arm, on the other hand….

So that’s the theory. And there’s no way to know if it will happen when I return next week for that blood draw again. Or if it will ever happen again. Maybe it won’t. But with my luck healthwise, that’s probably too much to hope for.

So much for my simple appointment.


Exactly the same and completely different 5 years later

July 27, 2016

birthday-cake-1320359_1280Happy birthday to us! Last week was the 5 year anniversary of Chronic Rants. And when I look back, it’s hard to believe how much has changed and how much has stayed the same over the last 5 years.

I still have the same symptoms as I did then, it’s just the severity and frequency of various symptoms that has changed. I no longer work full time at an office, but I am trying hard to start a small online business that I can do part time from home. I still encounter all sorts of ableist bullshit, though it’s usually in different ways than before.

I suppose the biggest change is my perspective. 5 years ago I was struggling, but I assumed that I would continue working. I assumed my health would continue to slowly get worse. Little did I know that just a few short months later I would be leaving my job for a “temporary” break that would become permanent. I had no idea my health would get so much worse so fast.

But this blog has also helped to change my perspective. Writing about my illnesses has taught me a lot. Talking to you through emails and comments has taught me more.

I stand up for myself even more than I did before.

I am more aware of other illnesses, other medical systems, other cultures surrounding illness and disability.

There are many chronic illness blogs out there. I read a few before I started writing my own, and I have found many more over these last 5 years. The online communities are so important for all of us.

Now I wonder where I’ll be in another 5 years. Will I have finally found my fur baby? (I’m really hoping that will happen in the next year!) Where will I be living? How will my health be? Will I be able to travel again? Will I be working? Will I be on benefits? Which symptoms will be bothering me the most? Which will be worse? Which will be better? I have so many questions, and all I can do is work to push my life in the direction I want it to go and hope it goes at least a tiny bit according to plan.

Thanks for joining me on this awesome journey!


The pain of going to the movies

July 23, 2016

I think I went to the movies once last year. Or maybe it was the year before. When people ask, I say that I don’t like going to the movies because of the cost, or because there’s nothing good to see. Those things are true, but they aren’t the real reason. They’re just easier to talk about.

The truth is that even when there’s a movie I really want to see and someone else has offered to pay, I still decline. Because no matter how good the movie is, it won’t be worth the pain of seeing it.

To be fair, I haven’t tried the new reclining seats yet. Maybe those would be better. But regular movie theater seats are very uncomfortable. Plus, there’s the problem that I have to sit in one spot for over 2 hours!

Friends have suggested that I sit on the aisle so I can get up during the movie, but I can’t imagine that going well. The people around me would not be too happy if I was getting up, walking around, and stretching during the movie, and I wouldn’t blame them! I could sit in the back row on the aisle…. but only if the seat wasn’t already taken. I’d have to arrive really early to be sure. That would mean even more time in the theater.

And again, it’s just not worth it. Sure, I could arrive really early and sit in the back row on the aisle, even if the people I was with didn’t want to sit there. I could get up during the show to stretch and walk around. I could leave the theater and walk up and down the hallway. I would miss parts of the movie. I’d be distracted. And in the end, I’d still be in pain. So please remind me, why exactly would I want to do this? What would I gain?

I have missed a lot of “great” movies in recent years. And I don’t regret it at all. When I think about what’s missing in my life, “going to the movies” isn’t anywhere on the list. It doesn’t even come to mind. When I think about the things I’d like to do in the coming months or years, again, “going to the movies” isn’t on the list. There are too many other things I’d rather be doing.

I do watch movies, though. Sometimes I watch them on tv. I have a lot of dvds that I rarely even find time to watch. I can get movies from the library.

The difference is that I can watch them all from the comfort of my own home. I can pause them when I need a break. I can get up and move around as needed. I can sit more comfortably. I can reposition myself as needed. I can stop halfway through and finish the rest the next day. This all makes it totally worth it.

But going to the theater? Not at all.

[Side note: I’m going to the theater tomorrow to see someone I care about perform the lead in a play. I know I’ll be in pain, but I believe it will be worth it. Wish me luck!]

What about you? Are you able to go to the movies? Is there something similar that you skip out on altogether because you feel it isn’t worth it, even though people insist you should try anyway? Please comment and share your experiences!


Missing fresh air

July 18, 2016

I hate summer. I do. I hate it with a passion. Really, though, I just hate the weather.

Like so many others with chronic illness, my symptoms flare in hot and/or humid weather. That means I feel worse when the weather turns. Air conditioning helps. It doesn’t prevent or fix the problem, but it does cushion it a bit. So I spend a lot of time indoors with air conditioning.

But that’s incredibly limiting. I haven’t left my apartment in 2 days. Before that, I hadn’t left in 2 days. I used to stay home for days at a time because I felt like shit. That sucked. This simply sucks in a different way. I feel decent enough that I’d like to get outside. And at the very least I’d like to get some fresh air. When I feel lousy in October and can’t leave the house, at least I can open a window!

But now if I open a window the air is thick and stale and unpleasant to breathe. So I keep them shut. I go from my apartment to my car to a building to my car to my apartment and feel like I haven’t really gotten any fresh air at all. And really, I haven’t.

I shouldn’t complain. I’m really very lucky. This is the least horrible I’ve felt in a summer in many years. And at least I have air conditioning in part of my apartment! I am super grateful for that!!

Still, I’m frustrated. I miss going outside. I had been working hard to exercise more and I was taking walks just about every day. Now, I’ve probably taken 2 walks in the past month.

I’m counting down. I figure the weather should improve enough that I can open windows and go outside again in about 2 months. 2 months. 2 long months. In the meantime, I’m texting with my friend with chronic illness, who are also trapped indoors. Maybe I should invite them over. At least then we could be trapped together.