chronic illness · chronic pain · crps · ketamine · writings

life lately

Hey hey.

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mood.

I have been in a bit of a funk the past few days. I am in all honesty REALLY not doing so great.

I’m not sure what is going on but ever since coming home from my 2nd ketamine infusion I have been super nauseous, headaches every day and of course my pain is way way up. Joints are aching, muscles all over are cramped, and my nerve pain is pulsating and constantly burning in that very familiar way. I am back to my old “not leaving the house but once a week routine”. I canceled PT the past 2 weeks because of how badly I am feeling and feeling worried that PT could just make my pain way way worse. I have been able to make small improvement with normalizing my walk in the PT pool and getting my feet used to weight bearing…but that was before my 2nd infusion and when I was feeling some relief with the pain.

I did have a MAJOR flare up with my first ketamine infusion but this is different. My nausea was bad before going into the hospital but this past two weeks it has been constant. I didn’t have the ongoing headaches, increased joint pain or this weird all over muscular pain.

So very very fun.

I would REALLY like to see a GI dr so we can do some tests with my gastroparesis and figure out some how bad the nerve damage is/how slowly does my stomach breaks down food but UVA can’t see me until September. I have been striking out with other doctors in town.

My knight in shiny armor aka the dude who is going to fix me aka Dr. Kaplan came up with a plan to hopefully get things under control before September.

We are upping my cromolyn sodium to hopefully reduce inflammation as part of the issue is that my vagus nerve is jacked up.

If it doesn’t, we may add Marinol aka synthetic THC pills back in as a back up for my nausea. The medication has been helpful with my nausea but the pills make me REALLY high/groggy (apparently I like to make videos when I am under the influence). I took it my entire stay at the hospital during my 2nd ketamine infusion since my first day there was AWFUL (this video is kind of pathetic haha). It thankfully did allow me to eat more regularly with less nausea but I just cannot be that high all day every day. It was nice however to enjoy eating. Thank you munchies!

As of right now I am not eating much and am dehydrated because drinking fluids often bothers my stomach. Blah blah blah. I am very grateful (gotta be grateful y’all) that there’s so far been no puking and no passing out.

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the source of half my woes.

Gastroparesis is the pits and rules my life pretty much as often as my pain does.

This has been going on since the fall of 2012 and I just wish I could have some consistent relief from it. 

The hardest part about feeling this crappy is the effect it has on my family. Sean gets down in the dumps and is responsible for more stuff around the house which is hard since he is working sometimes 6 days a week. My mom also has to pitch in by helping me get medicines and bringing me safe foods so I can try to eat. I know its painful and frustrating for my family and friends to see me struggling and being overall unable to help me feel better.

prayfororlando

The shootings in Orlando have also been weighing on me heavily.

The LGBTQA community is an important one to me. Half of my close friends are gay, bi, or queer. The thought of some of the most special people I know being gunned down in a club has brought me to tears  yet all across the world people are facing that reality as they mourn their special people who were slain unnecessarily at Pulse.

I just don’t know what to say that hasn’t been said.

I am angry. I am sad. I am aghast at the thought of this continuing. I just don’t understand hate. Real hate. Yeah there’s some people in this world I don’t like. People who have been cruel to me. People who hurt me in ways I wish hadn’t happened.

I cannot imagine hurting any of them.

I also can’t imagine HATING a group so much that I thought it would be a swell idea to rain terror and horror down on innocent people out having a good time. In an odd twist, it’s looking like the shooter may have been gay themselves which makes it all even more sad, that someone’s self hatred could be so vast.

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20 of the 50 victims who died in the Orlando shooting.

It’s just so unimaginable.

I had the unfortunate luck to experience someone’s bigotry on a friend’s post about Orlando last night. This individual stereotyped those in the club as “soft” because of their sexual orientation and also victim blamed by stating that no one tried to stop the shooter. Of course they ended this lovely statement by saying “they weren’t bashing the gay community”. It was unreal and made my heart pound with anger. Being the occasionally hot headed social justice warrior I am, I called them out on this bigotry. I was met with more stereotyping about how because I am a liberal and “ignorant” I am part of why these shootings keep happening along with how I am soft and weak because I am a liberal and hopefully I will never get shot at. There was some nonsense about how I better be aware of my surroundings in case this happens to me.

What a nice person….*eye roll*

My friend Jackson wrote a moving blog on the Orlando shooting and I wanted to share it because I think its something people need to read. I am proud to call Jackson a good friend and I am angry that anyone would want to hurt them. The very thought turns my stomach.

What a world we live. What a time to be alive with so much political discord, senseless violence, bigotry of all kinds and a heaping amount of hate. Some days I have to turn off the news because it just messes with my brain and my heart and makes me feel like the world is just a crummy place.

I know there’s a lot of beauty still and I see it in how we all rally together during any tragedy and I am glad to see that during the largest shooting in all of US history, we can band together and take a stand against violence, guns, and homophobia.

Here’s to hoping there a better days ahead.

Much love to you all. Over and out.

*header image is by the incredibly talented Jewel Peach Photography

xogen

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