*To be warned, this is a ramble, constructed while fighting pain and hoping that I will soon tire enough to just kerplunk into the computer screen*
“Pain Awareness Month” see, http://www.theacpa.org/September-is-Pain-Awareness-Month — see it, use it, and only abuse it if you are donating. CRPS/RSD month comes in November, and I am currently brainstorming the correct way to debut the greatness of raising money (step aside others) to raise money for treatment and research for a cure during the month of November. All my readers will be required to participate in some way shape or form. I’m not losing more of myself to this disease, nor wonder who gets it next, without REALLY starting more awareness (see infra).
“If pain must come, may it come quickly. Because I have a life to live, and I need to live it in the best way possible. If he has to make a choice, may he make it now. Then I will either wait for him or forget him.”
― Paulo Coelho, By the River Piedra I Sat Down and Wept
HA! (She said with a sarcastic smirk). Pain. Quickly. It ends?! With what void? With what hole?
I know I promised a Jules’ challenge — it, honestly, has been an incredibly rough week. For those that have commented, emailed, facebooked, etc. I know my Communications major lacks in all regards this week. But how do you ALWAYS talk about the bad — well, you don’t. Sometimes the bad is so horrific that you are the mass under the (yellow) duvet, crying softly or in agonizing snort-like sounds that sometimes Colin has a difference between discerning whether they are laughs or cries (until he sees the blotched face). Sometimes the bad is so horrific that you get snuggled while watching The Fault in Our Stars with my yellow. And sometimes it is so encompassing that you are about to scream at the pharmacy that promised to be open until 7pm tonight so you could get the ONE. SINGLE. MEDICINE. THAT. PUTS. ME. OUT. AND. STOPS. THE. SCREAMING. AT. NIGHT. Didn’t happen. I got there at 6:30, pharmacy closed (yes, I do appreciate that others have families and shouldn’t be at my strong need for a beck and call), but tell me 6 on the voicemail that tells me hours for Labor Day–I hate lies. So, I am relying on the other medications to make Colin rest peacefully throughout the night and allow allow me to scream, say, at about 8 am like a good little alarm clock. 🙂
Yes, for those who wish to stay at Chez Roo (it has a longer name, but for anonymity sake, Roo it shall be)–if medicine is not dosed properly at bedtime, about 4 am (last night it was about 4:30) sounds you didn’t think you’d hear unless you were a) giving birth with no epidural or b) watching someone give birth with no epidural emit from my mouth. It’s terrifying for all involved. We settle me back in (the first few times cost me near a month’s mortgage because we kept going back to the same inept ER doctors (not saying all ER doctors are inept – – wait until you get me started on neurologists). Nonetheless, the one’s that pick my file, need to fly back the the correspondence school they “graduated” from and PLEASE get a better education for your heart might be in the right place but you truly have no idea what in the world is going on with a case that isn’t first year medical school textbook. Yet I forget, I’m special.
“I always hated when my scars started to fade, because as long as I could still see them, I knew why I was hurting.” ― Jodi Picoult, Handle with Care
Partly, that encompasses what sucks about invisible diseases. My scar on my chest for my port is fully visible (and I wear it proud), but other than that – I look at least “normal”. The other night we went to grab a drink at a bar. I was wearing one of my super-cute dresses (I have super-cute pjs and super-cute dresses–depends on the venue :)), yet I had my cane. This woman stared. Luckily, I had my sunglasses on so my stare felt like a stare but I could lose the contest every now and again. She kept staring as I walked by and I asked, “Is it the awesome dress or the cane?” — and then took my seat. Yes, I am that snarky at times. 🙂 She possibly meant no harm and just was thinking she wished she looked like me and had such a handsome husband. But the cynic in me . . . well, we’d have to make this have a “PARENTAL ADVISORY” label on it to know what I really think.
HOWEVER:
To suddenly change scenes, I get the awesome opportunity to speak in C’ville in October to C’ville NOW on Title IX. (And a shout out to whomever wants to hire me to run their Title IX program – I’m here, I’m willing, and I am humble enough to say it that I am darn good).
Regardless. I have things I need to do. I have things I want to do. (Wanted to point out the speaking engagement because I know I need to get my bio up there–and it shows, I am working on more than work and being alive.
What hurts the most (yes, I know this is the beginning of a song, but I am not going there) . . . Is being so close . . .. (Sing it Rascall Flatts lovers) I have come to the 100% determination that we all have our demons. Those demons can jump out at us without a moments notice. It can be walking by someone who assaulted you 16 years ago and then suddenly realize why you felt like you were going to throw up. It can be seeing a liar and a cheater with SUCH an “easier” life (or the facade of one) and treat others like scum, and you know that if you had that money, that power, that influence, that your life would (in fact) be easier (I do not lie), but the rest would go to others. To research. To curing the ills that ail society — rape, sexual assault, starvation, genocide, racial injustices, illnesses — rare and “common”. NO CAUSE IS TOO SMALL. But no cause is bigger or better than another.
Essentially, my pain is morphing my families life (well, some of them) and my life in ways that are great (in terms of morale) and horrific in other ways. Something strange and neurological (not with my brain functioning, but rather with my legs and arms are doing the “funky monkey” lately, and — I can rant for hours — but I don’t know of a single neurologist that I would again step foot in their office and . . . I think one should see me soon. My plan. Let’s wait to see what the family doctor, who has NO specific training in my disease or on half the medications I’m on, has to say. (OOOOO the bitter train is on a roll). I will keep you updated, but that is the final piece of the puzzle of why I haven’t been a master of correspondence this past week or so. (Also, I’ve been trying to do this thing called work, yelling at Verizon (long story), and then taking held in anger out on home health. I realized before I got too snippy that someone was just a prick away from my heart and that I’d tone it down a bit).
Thus, this rambling passage, which may or may not be edited, is coming up with a yellow rose (well, they are next to my bed), and you get to end on a quote:
“It’s the same with people who say, ‘Whatever doesn’t kill you makes you stronger.’ Even people who say this must realize that the exact opposite is true. What doesn’t kill you maims you, cripples you, leaves you weak, makes you whiny and full of yourself at the same time. The more pain, the more pompous you get. Whatever doesn’t kill you makes you incredibly annoying.”
― Rob Sheffield, Love is a Mix Tape
And to comment on the above quote. I’m not whiney, except when I don’t have a chai or a ginger ale. Then it’s trouble folks. The little things that make me smile. Geez, I should have invested in diet ginger ales long ago. Me and the octogenarian community would be rolling in the dough.
*Night, but I do want to mention that there will be two/three posts soon on disease awareness because I promised to dump something on my head soon and THAT has to be documented on my blog (why else have a blog?)*
amonkeyandazebraallinone 