I keep meaning to post an update, but my brain is all over the map as far as topics. So, I decided to share some of those topics/realities with you all today. I am going to share the cold, hard, and possibly boring truth of just what life has been like these past two months (since my craniotomy- August 3, 2017). Let's see if I actually get to ten. . .
The Emotional Roller Coaster I've always been an emotional gal, just ask my mother. ;) It is true, I wear my heart on my sleeve and am an "external processor". I have never been afraid to cry (or laugh!). To some folks, this makes me "emotional". However, emotional has a whole new meaning these days. I might burst into tears at any given moment for unknown (non-existent) reasons. Just yesterday I was quietly crying in the car on the way home from errands with my family. I was glad the radio was on and no one noticed. Crying freaks people out. It's not that my family doesn't care, and at least they "get it" more than most people. . .but still it's hard for even the people closest to me to comprehend. It makes people feel uncomfortable. You should see the looks I get at the grocery store when I sit and cry while waiting for my SO to manage the checkout alone (some days it's way too much for me to bear). What's up with the crying? I think it's the fact that Gertrude was in my emotional center. It could also be the fact that my life is totally upside down and feels out of control at times. . .or perchance the fact that it will take my brain two years to recover from being invaded. Whatever the reason, the crying is just part of my days now. So if you see me crying, try not to make me feel worse because I am making you uncomfortable. (pro tip: Don't try to fix it. You can't.) I Suck at Getting Stuff Done I started this blog post on October 8th. The editor was locking up and not letting me upload pictures. So I decided to avoid the frustrations and do it "later". . . we're now at ten days later and counting. . .maybe I will finish it today. Same goes for most things. I have these intentions and ideas, but the fatigue and fog make me want to crawl under the covers. I suppose crawling under the covers is "fine" and "to be expected", I just wish I didn't stay under there so much. Financial Ruin Oh boy, my favorite topic. . .money (not). I haven't worked since the middle of July. I have over $20,000 in medical bills. I have no disability coverage. The YouCaring fund that friends and strangers have been donating to is helping. This has enabled me to cover the little things, like my phone bill and food. Receiving donations from people who I know scrape to get by themselves has been humbling. I truly appreciate the help, as much as I hate being in the position to need it. My bus is for sale. My car may be next. Update: I am now working "up to half-time" from home (25 hours so far this month). This should help. I'm Hungry Food. Food is a lot of work. Especially with food sensitivities and allergies. It's exhausting. One meal after another. They just keep happening. It is very hard to make good choices when I don't have the energy to cook. Currently I am trying to come up with items to prep on good days and then be able to eat with little/no effort on those days when I just can't. {I. Just. Can't. That feels like my mantra lately}. Sometimes I have enough energy and focus to do quite a bit of cooking and prepping at once, I hope to continue to find ways to take advantage of my energy when it's available. Currently I am learning to use my dehydrator to make meals that I can re-hydrate as needed, (Previously my dehydrator was pretty much just used for kale chips and beef jerky - don't judge). I am also considering taking up Sous Vide cooking, as this method can easily be used to make-ahead and makes zero mess on the day it's actually cooked. Stay tuned. This past weekend, my square dance club brought me a bunch of food. It has helped me not only have things to eat this week, but also to stay encouraged and get creative in the kitchen. So far, I am not eating anywhere near as well as I would like, but I am making progress. This is a super emotional one for me. I am a foodie. I love to cook and eat well. I spent the last couple of years getting in the best shape of my life. . . and now my go to meal is canned tamales! People (mostly) Don't Care Listen, I know I have a few real cheer leaders, a handful of angels and a supportive family. I am blessed beyond measure and that is a fact. HOWEVER, another fact is that more people DIDN'T do what they said they would do than those who did. . . (and the vast majority neither said nor did anything). As an abandoned child with mommy issues, this is a hard one for me. I take it personally when people don't do what they say they will do. . .this is a pet peeve on your average sunny day in April. . . after brain surgery, it's devastating. Does it matter? Why bother saying this? Are you trying to make people feel bad? No. I am really am not. But please people, do what you say you will do. Here's the thing though. . . just as people let me down and disappointed me (and in a couple of cases, left me hanging with real issues), people also touched me with their kind hearts and caring acts.
I Don't Care It took me a minute to remember why this was on my list (a good reason not to wait 10 days to finish something). Maybe "I don't care" is an overstatement, or a mis-statement. More accurately (but less of a headline): I now choose to care about only the things that actually matter AND that I can do something about, and to let people do what people do (unless you are my minor child, really EVERYTHING you do is up to you and not me. . so you do you, I'll be over here wondering what's for lunch). Seriously. Need to prioritize your life? Need to get a reality check about the "small stuff"? Have someone call you and say that you need emergency brain surgery! That will shift your thinking on a dime! (I didn't actually get 'emergency' surgery, but that is initially what they said - it ended up being a few weeks before the surgery). Suddenly the nonsense just dropped like a hot rock. Spelling is Hard Spelling is hard, so is math. Cognitive deficits for a magna cum laude graduate who barely studied in college. . . humbling. Frustrating. It's getting better. I have been working with an amazing Speech Therapist and building my skills back. Still, even during this blog post, I have: typed know when I meant no, tried to spell encourage with an i and wondered why spell check said it was wrong. These are little issues. The bigger ones are concentration and focus. I do good to focus on one thing at a time, so if we are talking and I start looking at you like you're a two-headed alien chances are you changed subjects and lost me. . . or I somehow derailed myself and am totally lost. What's for lunch? ;) I'm Tired In fact, I am too tired to write this section. :P I'm Sick of Hearing: At Least It's Not Cancer Am I glad I don't have cancer? Fuck yes. Does people saying things like this further dismiss what anyone with an invisible illness is going thru? Also fuck yes. It's not a competition. Struggles are struggles and long term illness is a big suck fest of struggles. Please don't get out the tape measure. . .;) #nuffsaid Progress Isn't Permanent
Oh, this is the hardest one for me. Some days I can manage to do normal things (like cook for hours, or go to RenFest with my family with only a few challenges). Other days, I am lucky to let the chickens out and find the remote. I tell people I am doing the brain surgery cha-cha. That's really what it's like. Two steps forward, one step back, two steps forward, uh, I forgot what's next, let's nap! I guess I hoped for a sort of upward trajectory where one day's progress would be built upon the next day. . then ba-da-bing. . I am back to my old self in no time. HA!! I have come to learn that challenging days and overwhelming obstacles come without rhyme or reason. It behooves me to take it as it comes and be gentle with myself. I am not sure how that is going to play out at the office. . . and honestly sometimes it doesn't even play very well at home. . . but it is. For instance, yesterday and the day before I had an absurdly hard time trying to make a medical appointment. While it is true that the woman on the other end of the phone is bad at her job, it is also true that I NEED to make that appointment. I will persevere. But not today. Today I am content to leave it on my to-do list. I'll get back to it. Tomorrow. Or next week. And that's okay. If you have hung in this far, thanks for listening to my ranting and rambling. . . . and brain surgery randomness! May your day bring what you need,
1 Comment
Kasey Gomez
10/18/2017 03:34:51 pm
I LOVE YOU!!! We are not close, but I watch your updates closely and I'm always sending love to you. There are hard days, but I'm so happy you get good days. Sometimes I don't know what to say because none of my words will make things "better" but I do hope you'll let us know if there is something we can do! Even if it's just a small visit with some laughs. Maybe we can set that up in the future?
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Jules Warner - AuthorThanks for reading my ramblings. Archives
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