I realize my last post (definitely a minute ago) was pretty dark and unhappy, but indulge me for a minute? It’s been a week. I just need to vent.
I got voluntold I needed to schedule an appointment with my PCM at the beginning of the month because the doc I have been seeing for the last few years is rotating out and to save me the frustration of waiting for the new doc to check in and get up to speed and then catching her/him up on my particular case, it’d be easier just to get my yearly check out of the way.
So I got my labs and got the check up done. Labs were good, but doc was covering bases and wanted to make sure my brain tumor wasn’t getting any ideas about sending friends and relatives into any other body parts, so she gave me an order for a mammogram. I got that scheduled and it was done yesterday. (in other grumblings, I’m pretty sure she should have been kinder or bought me a drink….but anyway.)
In the midst of directing traffic, my pain specialists needed to reschedule my every-8-weeks check to be compliant. Okie-dokie. Reschedule me. Ain’t no thing. No, I don’t want to see the other PA, I’ll wait for the one I usually see. Yes, I know that’s an extra week. I’m used to you sending my scripts between appointments. Same doc, same pharmacy, yes I know the fluffing rules.
Scripts were due today. They called me yesterday to let me know they sent my scripts in, pick them up today. (yes. A lot of rules. I follow them. I’m over it but I still do it.)
Yes, my scripts were sent in, but they neglected to let me know they were only sending enough meds to line up with my appointment on the 27th instead of just filling the usual fluffing scripts and seeing me in 10 days.
Yes, my scripts were sent. Yes I’m happy they’re not making me wait and I’m not without pain meds. But I feel like I’m being punished for being sick.
The American approach to chronic illness/chronic pain is growing more and more frustrating. I jump through a lot of hoops and follow a lot of rules because I haven’t felt like I have a lot of options. I have an artificial hip from hip replacement surgery at 34 because I have Congenital Hip Dysplasia that was missed until well into my late 20’s. As a result, my spine is seriously pissed off most of the time. Then, four years ago, I was diagnosed with an inoperable brain tumor. Related? Possibly, but it doesn’t really matter now. I just treat and survive the symptoms.
I didn’t ask to be sick. I’m stable but it has taken years of going through a lot of trials and failing SSRIs, nerve pain meds, OTCs, and a bunch of other difficult options. I’ve been through anestesia 13 times in one year and I’ve lost count of how many needles they have stuck in my spine. It’s been fun.
So….hopefully understandably I am especially frustrated today. I feel like I’m being punished every time my doctors put up another roadblock or hurdle to jump through. I’m trying, and until more recently I haven’t had a lot of options in my state. Suffer or dance, monkey.
I actually now have another option, but I have to talk to my pain specialists and get them on board or I end up failing tests they require. Here’s hoping.
*sigh* I’m off to eat ice cream and watch something that hopefully will replace frustration and hostility with just a hair more patience.
I actually have been working on another draft about life, the universe, and everything as I come up on four years since I was diagnosed with a brain tumor, but last night I had a melt down and went into crisis mode.
I see my pain specialist more than any of my other doctors and because I live in a state that is making progress, but still leaves a lot of room to be desired on the part of chronic pain patients, I get my scripts filled every 28-30 days. I have five scripts that have to be filled every month and another three that get filled every three months (muscle relaxers, synthroid, etc). Of the five, I have three that *must* be filled every 29 days (give or take a day).
I follow all of the rules. I sign my “contract” every year. I jump through all the damn hoops pain patients have to fluffing follow. I accept that the doctors, the pharmacists, and my insurance all fluffing track me. I have had the same pain doctors for over 6 years. I had the same pharmacy until last year when insurance made the choice to kick CVS out of our plan, so I went back to Walgreens. I live in a fairly small town, so I see the same people every month.
I follow all the damn fluffing rules!!
So, when I went to get my nighttime doses of my meds last night and realized I do NOT have the number of long acting pain pills I should have I panicked!
I don’t know why I didn’t notice sooner, but I last filled my scripts about 10 days ago, so I was missing about 2 weeks worth of pain meds. I freaked the **** out. If you know what it’s like trying to fill a schedule II script, you understand the fear that comes with not having your meds or being able to account for it. The rules are: we don’t give a fluff if you lost them, flushed them, or had them stolen. YOU are responsible for your scripts and your meds, so buckle up.
The one fear my husband has is not that I’ll have a seizure halfway down the stairs and the cats don’t know CPR, or that I’ll forget where I live and not be able to drive home, or even chocolate milk. (seriously, how many people almost die by chocolate milk? …..don’t answer that.)
It’s that something will happen and I won’t have my meds. Because that means withdrawal, and we both know I ain’t surviving that. Judge me, but my pain scripts mean I can be a “theatre mom” for my youngest. Or clean my house. Or get the grocery shopping done. It means my husband can work, and travel when he needs to, and I can run my house and be a grown up.
But suddenly, I did not have the ability to survive until my next script would be filled. I collapsed in fear. I didn’t even cry myself to sleep as I tried to figure out what to do. I just sat there in terrified silence, contemplating ….well crisis mode.
Fortunately my husband figured out that he needed to go talk to the pharmacy because if their pill count was off I could prove my script had not been filled properly. He was at the pharmacy this morning when they opened and went over everything with the pharmacist. They checked my file, checked their pill count, and discovered they were “over” as many pills as I was missing. It ended up being a relatively easy fix with a lot of apologies from the pharmacist, and the whole thing was over within 12 hours.
This is the world I live in. This is why I jump through the hoops, and follow the stupid rules. So that in the event something like this happens, I can show that I am a good and cooperative patient. Today I’m still feeling a little fragile, and my wrists are a little sore from being in a dark place. (No, I didn’t actually hurt myself. But I was definitely in crisis.)
I live in a very small box, with a lot of rules, and not a lot of room to fight back. This is the reality of being a chronic pain patient in the US right now.
I have literally been meaning to write an update for over 2 weeks, and then I got a comment giving me the “hey, you good? you needa post” and I realized how unbelievably overdue I have been for blogging. I’ve been working on a post in my head for the last 10 days (ish), but it seems I don’t have Jarvis to translate that noise into an actual post. Who knew?!
So….um, where to start? My last post was me losing my ish over a school shooting here in our little rural we-have-Amish-buggies-sharing-our-roads and it brought everything up close and in my face.
That was immediately followed by the National Marches…
…and a lot of noise and conflict across the country. I know people on both sides of the debate and having spent the last 4 years or so teaching my kid American History I understand the need for debating this issue. But then…
Just 3 weeks after the March for Our Lives (March 24, 2018) an 8 YEAR OLD was arrested for bring a loaded handgun to school on April 18, 2018. IN MY COUNTY. In my little corner of rural small-town America. And I lost my shit.
THREE gun events in our little county. In. ONE. School. Year. so far.
That is not okay. I am not okay.
The first one: two students being arrested for threatening to shoot up the school MY kid goes to just 2 days after the Parkland shooting. They were heard and reported and it was stopped, but how terrifying is that?!
The second one: The shooting at Great Hills High School. That affected us up close. There’s only three high schools in our county. 1400+ kids were evacuated from GMHS to LHS for reunification. Jaelynn Willey’s loss affected us all. We’re a small community and the shooting was an unimaginable shock.
The third one: an 8-year-old being arrested for bringing a loaded handgun to school. A third grader. Both parents are active-duty military. A girl on his bus saw it and reported it.
The kids are being told over and over and over again “See something, say something” and they did and it stopped two tragedies this school year. But it is breaking my heart. We’re scared. We’re frustrated. This is insane.
February 16, 2018
March 20, 2018 (Jaelynn was taken off life support on 3/22/18)
April 18, 2018
These are the dates that affect us right here in my town. This is a nation-wide debate but right now it’s up close and in my face and I can’t breathe and I don’t know what to do.
In the last month I’ve also had a lot of really awesome stuff keeping me busy and I’m going to write up a part two to the updates and try to get that published tomorrow. But it’s been busy and crazy and hard stuff is in my face and this hurts and whattheHELL?!!!
Yes, there’s lots of good things and experiences I’m going to share. Yes, we have been lucky and my child is safe but I’m processing.
More updates being written and I promise they’re the good stuff!
❤ ~ X
It’s a cool, rainy, windy Fall Sunday for us in the Northeast. And a bit somber for me today too, as I learn of my friend losing her Dad to cancer this morning. My own Dad passed, from cancer, 5 1/2 years ago so I understand my own experience with mourning the loss of a parent. I’m trying to word that right because I know my feelings and experience aren’t the same as hers, and I’m trying to remember that and respect it.
But it definitely feels like there are far too many of us in the Club now…
Cristina: “There’s a club. The Dead Dads Club. And you can’t be in it until you’re in it. You can try to understand, you can sympathize. But until you feel that loss… My dad died when I was nine. George, I’m really sorry you had to join the club.”
George: “I… I don’t know how to exist in a world where my dad doesn’t.”
Cristina: “Yeah, that never really changes.”
~ Grey’s Anatomy, S3; E12 Six Days, Part 2
And onward to today’s photo….
Happy Sunday Spoonies! See you tomorrow for day 6! ~ ❤ Xun
This came through my inbox by way of another awesome chick I follow. Her take:
When I read over the healthcare bill draft released to the public last week, I couldn’t help but cry. If this bill passes Senate, I won’t live to see my 40th birthday. This isn’t a maybe, it’s an absolute fact. This is secondary to the millions of others who will be affected by this and I’m terrified for all of us.
Nikki perfectly and succinctly articulates the way many of our government officials view those with disability and hardship – that these problems are self-created by the individuals who are on these programs. Her mock obituary is a sobering view of what the passing of this bill will do to her, myself, and millions of other Americans.
Many of us in the chronic illness community are already fighting to be taken seriously, to have access to pain relief, to be seen and heard. The Affordable Care Act is not perfect, but no option for health care is so much worse.
My friends, my sisters, my daughter….need access to health care. Even without the challenges of an inoperable brain tumor, or a lung transplant, or kidney disease, Crohn’s Disease, or any of the myriad of autoimmune diseases, health care should not be a privilege.
Yearly preventative check-ups, well baby and child care, vaccines (don’t start with me), birth control, or emergency services for when your kid falls of their bike!! These are not unreasonable expectations for a developed society.
Please write to your representatives. Yes, again, if you have to. Stand up for those that don’t have a voice, stand up for your loved ones, stand up and tell DC this is not okay.
Source: Me Without Healthcare….
I saw a lot of support for International Women’s Day yesterday, but there was also some really ugly closed minded responses (here’s to the “real women” that didn’t “strike” today). Did you know that *every* March 8th is Women’s Day? And November 19th is Men’s Day? And yes, this year Women’s Day held some extra weight. Because of the events of the past….6 months? (give or take) women are marching, speaking out, striking, 10 Actions in 100 Days.
I personally lean pro-life, but I’m standing up to make sure Roe V Wade isn’t overturned. I personally lean more hetero feminine female, but I’m standing up for people to have the right to be who they are. I personally am married to a man in a traditional marriage, but I’m standing up to make sure Same Sex Marriage is not overturned in any of the 50 states that it’s now legal in.
I have a mother, and a grandmother, and 2 daughters. I stand up for them. For me. For women that can’t. For my friends, and family, and all of the women in my life that I love. And for all the women before me, after me, and the women that inspire me. It doesn’t cost you anything to be compassionate and supportive, but it means everything to the peoples that need it now, and in our future generations.
Chronic illness doesn’t take a day off, chronic pain doesn’t take a day off, life doesn’t take a day off, but I did post a strike notice yesterday on my blog. No, I didn’t march on Washington or lay on my couch and check out for the day. But I spoke out and I supported the women that were doing the marching and the protesting. Because I have daughters. Because I know what it’s like to be a woman in this county, in this time period, in this world.
Why did we speak out on International Women’s Day this year especially?
Because being a woman means….
1. Carrying your keys between your fingers as a “weapon” when walking alone at night.
2. Turning your headphones off (or way, way down) to make sure you’re not being followed.
3. Mastering the “I’m walking quickly but not so quick you’ll know I’m afraid” when someone is behind you.
4. Calling friends when alone in a taxi/Uber/Lyft/walking from the Metro to your car in order to feel safe.
5. Texting your bestie/boyfriend/parents/brother your driver’s details “just in case”.
6. Messaging them when you get home to let them know you’re okay.
7. Sitting near other women on public transport to minimise the risk of being harassed.
8. Pretending to be on the phone in any number of situations to avoid harassment.
9. Giving men fake names/numbers rather than risking them lashing out at being told “no, thank you”.
10. Staying silent when being verbally harassed out of fear if you say something it’ll turn violent.
11. Keeping your drink covered with your hand/ getting your friend to watch it if you need to go to the bathroom/having to throw it out & get a new one if it was unattended at a bar so you don’t risk getting drugged.
12. Making sure someone always knows where you are if you’re going on a first date with a stranger.
13. Toning down statements with words like “just” and “sorry” to avoid being perceived as pushy or aggressive or bitchy.
14. Faking being happy even when you don’t feel like it to avoid being seen as a bitch.
15. Not being TOO perky so that people don’t think you’re stupid.
16. Pretending to be patient when you’re interrupted/talked over repeatedly by men.
17. Spending money each month on period products, which are still considered a “luxury” by men/governments.
18. Hiding said products up sleeves/in pockets when going to the bathroom in public places, because there’s still a stigma around periods.
19. Wearing makeup because you’re conditioned to believe your bare face isn’t good enough
or heck, just because you like it – and being told you’re fake/called false advertising.
20. Or not wearing makeup because you don’t want to & being told you look tired/sick/”you’d be so pretty with just a little make-up”.
21. Debating whether the tweet or Facebook status you’re about to post will result in being harassed,& having to make the decision about whether it’s worth it.
22. Answering/deflecting personal questions about your relationship status/fertility/home life from friends/coworkers, potential bosses, current bosses, or random strangers.
23. Dealing with birth control/side effects if you have sex with men & want to avoid getting pregnant because there’s still no male equivalent available.
24. Fighting with the knowledge that the government (dominated by men) has the power to legislate against your body, and standing up to make sure they don’t.
25. And, finally; dealing with people telling you your concerns aren’t valid, you should stop complaining because “women are equal”. (Also known as the “what rights DON’T women have?!” argument.)