Updates and Thanks

Here’s a really boring update on the past eight days regarding my health… and then a very exciting award ceremony –

Imagine how I feel

 

Sunday April 9th – I was taken to the ER with sudden severe abdominal pain at 10pm. After only marginal success controlling my pain they choose to admit me overnight. I went to bed unsure whether or not I would be having surgery the next day.

 

April 10th – my surgery was moved up to Wednesday. After additional testing and seeing the surgeon I was sent home at 5pm with the same pain management plan I’d had for two weeks.

 

April 11th – at about 5pm I was taken to the ER with agonizing pain and vomiting.  I’m pretty sure I quadrupled how many cuss words I’d said in my entire life that night. They discharged me from the ER around 10, after maxing me out on IV pain meds, since I was somewhat more comfortable, as in I was no longer screaming bad words. I didn’t scream bad words after I had brain surgery. All the nurses kept wishing me luck, reassuring me that surgery would be simple and successful. Feeling particularly fatalistic, I told them they hadn’t read my medical records thoroughly enough if they believed that, insisting I have terrible luck. More on why I was incorrect about that later.

 

April 12th – I arrived for surgery at 8am. There was a cuss word or two until they gave me IV pain meds. I was surprisingly calm, and taken into surgery around 10. The surgery went very long, the anatomy in my pelvis so twisted and tangled the surgeon couldn’t maneuver things back into place without doing an open procedure. He did drain the cyst laparoscopically before removing it though, or the incision would have been even larger. My surgeon said it was as big as a cantaloupe. I was kept overnight, the Dr hoping I could be discharged the next day. I needed IV pain meds a few times to be able ​to sleep, however no cuss words were required

 

About the cyst – it turned out to be a big mass of endometriosis, which is called an endometrioma. Endometriosis was also found on other organs and removed, along with the cyst and left ovary.  There was one patch of endometriosis on my right ovary and that patch was not removed.

 

April 13th – by morning I was off IV pain meds. However I still wasn’t meeting discharge criteria, the surgeon didn’t round until 2pm, and physical therapy still hadn’t seen me. Plus I was struggling more than usual with swallowing. I wasn’t even off clear liquids until half way through dinner, the order coming through right as I was served. The kitchen sent a second tray. So I got one more night in the hospital.

 

April 14th – I worked with the physical therapist, watched a lot of TV, mostly felt pretty great, and was discharged around 6pm. Figuring out how to manage me and my impairments once I got to my BFF’s house took some creativity but we managed

 

April 15 – My parents came for an early Easter dinner​ and we all had a wonderful time, until about 7pm when I got really light-headed. After the surgeon ordered​ lab test to make sure I wasn’t anemic (no ER trip involved fortunately) the surgeon’s ​theory was the problem is hormonal and mentioned wanting to put me on birth control. Later I was having hot flashes and that night I didn’t sleep at all, not because of pain or stress, I simply never felt tired.

 

Another aside – my hormones are nuts right now. Hot flashes, cold flashes, light headedness, three polar opposite mood swings in the space of 45 minutes, plus I swear it’s lowering my IQ. If I snap at you or act unthinkingly please have patience. I swear I’m actively trying not to be an insensitive jerk, things are just really weird inside my brain right now. I swear this feels exactly like puberty, only without the ability to sleep all day. Plus the Parkinson’s.

 

My Parkinsonism is also going crazy, sometimes my symptoms are so bad it’s like I’m unmedicated, other times, like Sunday morning, I haven’t taken my meds yet but I’m virtually unsymtomatic​. It seems to be changing as frequently as minute to minute. I’ve even experienced some symptoms that can’t be explained by anything but my Parkinsonism, but until Wednesday I don’t think I’d experienced them before. Symptoms I haven’t had since starting the meds last year have ​been popping up frequently. Female hormone fluctuations effecting Parkinson’s symptoms is a known phenomenon, I’ve been experiencing it from the start. Still this is ridiculous!

 

April 16 – In spite of getting no sleep I was really perky in the morning. I went to church, and the service was amazing. After lunch with my parents I returned to my bff’s house and took it easy. Again as evening approached my body went hay wire. My Parkinson’s, emotions, and hormones were all over the map. Even though I hadn’t slept in forty hours it still took me a really long time to fall asleep, and my night was restless.

 

Today – pretty similar to the past couple. My head is bothering me more than my belly. I’m​ very comfortable at the incision site as long as I don’t move wrong or stand. I can even breathe deeply without pain, and I’m not taking anything for breakthrough pain during the day. Still my hormones are pretty miffed.

 

Final aside – There were all sorts of symptoms that I’ve been experiencing for the past year that I’d attributed to my Parkinsonism that could also be caused by a cyst. In particular I’m thinking of my urinary symptoms. Prior to surgery I’d secretly hoped those things would improve, but so far no dice. Some of them are even worse. I guess it could still happen, but I’m feeling a little disappointed

 

I see my primary physician and my surgeon for follow-up appointments tomorrow, hopefully I’ll have more information about what the plan going forward is then.

 

One last thing before tomorrow… the most important award ceremony of the millennium!

In my mind the trophy is way more impressive than this one

And the award for most incredible people on the planet goes to…. Well you guys know who you are.

 

Thank you to all of you. Thanks for thinking of me. Thanks for visiting. Thank you for the cards. Thanks for the texts and phone calls. Thank you for the gifts, the balloons, the well wishes. Thank you for bringing me pudding.Thank you for explaining things to DR’s and nurses when I couldn’t. Thanks for looking in on Mom. Thank you for driving someone with the last name Daniels around. Thanks for laughing with me, for the encouragement. Thank you for giving me a kick in the but when I needed​ it. Thank you for giving me a home. Thanks for being my family.

 

Thank you for caring.

 

Giant billboard size thanks to everyone who prayed

 

I may have terrible luck with my health, but when it comes to all of you I won the lottery. You all are why I consider myself a lucky person. When I thank God for my blessings you always top the list.

 

THANK YOU! x 870,000,000,000 and then some more because it can never be said enough, even if sometimes I’m an idiot and forget to. I am so grateful for all of you.

 

Consider this your little golden statue, print it out and put it on your mantle, I’ll even buy you a frame for it if you want (it’ll be from Dollar tree, because that’s all I can afford, but still I’ll buy it for you). The amount of caring and love in all of your hearts is way more impressive than making a movie.

 

So, just in case you missed it, you have my thanks, my love, my gratitude, and an IOU for a frame. Unless you’re​ some stranger who stumbled on my blog via Google. If that’s the case, I love you with the love of Jesus and this post probably left you very confused.

 

Thanks

 

-CW

 

Author: CW Daniels

Hi, I’m CW Daniels! I’m a family caregiver to my mother HS Daniels who has dementia. I also have some major health challenges of my own. Making the pieces of my life fit together is a challenge and I don’t always get it right (Okay, so I almost never get it right!) but I’m figuring it out and learning my lessons along the way (and collecting quite a few resources and ideas while I’m at it). Join me on my journey of frustration, faith, and fun.

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