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.)
It’s not hard to find an article about the “Great American War on Pain (Meds)”, whether it’s a personal account or news about what our lawmakers are(n’t) doing for us….I mean protecting us from. Screw that brain tumor and spinal degeneration, chick, we WILL SAVE YOU FROM DAH DRUGS!!!!! ( whether you need it or not).
I never asked to be in this club, and I’m pretty sure there’s gotta be others out there that feel the same way, but I can only speak for myself, so other than the linked articles, these words are mine. This has been MY experience. The good, the bad, the really bad, the ugly, and the humiliating.
My personal journey with chronic pain started back in the 90’s with a misdiagnosed congenital leg length discrepancy. (I have congenital hip dysplasia….by itself not surprisingly unusual. But my case….the defect was missed my entire childhood, and then only begun to be discovered via a really ridiculous diagnonsense of “my left leg being 1.5 cm shorter than my right leg. Specifically, my left femur.”)
Fast forward about 15 years, throw a correct diagnosis of Congenital Hip Dysplasia in there (which by now has begun to affect my spine), a total hip replacement surgery, 4 months of rehab and PT, and a good dose of double pneumonia. (Side note: I also had nerve damage in my left arm) and you have somebody rolling into 2008-2009, discovering she has some serious pain.
So once I rolled all the O2 tanks out of my house because they were no longer needed, and tried to get on with my life, I found that I still hurt. A lot. All over.
I got told I was crazy, I got told I needed to see a therapist, I even had “potential drug seeking behavior, potential addiction? Anxiety disorder, h/x of eating disorder. Counseling suggested.” put in my chart.
“You just need some gentle exercise.”
“You just need to find a hobby.”
I have put myself through:
TriggerPoint Injections (still do. Sometimes they actually do help)
Nerve conduction studies in both arms, twice
massages twice a month (GOD I miss Susan, my massage therapist)
Deep Breathing exercises
Cervical Steroid Injections
& Radio-frequency Ablation for C6-C7 (twice)
All before they would consider any kind of drug therapy.
Then I had to run the gamete on all the different SSRI’s, SSNRI’s, and SNRI’s . I failed every 2 week trial. Sick as hell and exhausted, I would crawl back into my doctor’s office and plead with him to change my medication. Every time I had symptoms of Serotonin Syndrome. But I didn’t know it then. (I DO NOT do well on any kind of SSNRanything.)
Then it was Lyrica (pregabalin). Not bad, it worked (sorta), but I gained 30 pounds and my cholesterol shot up to 260 total. So I tapered off that and we tried Neurontin (Gabapentin). Which wasn’t bad, but the higher the dose went, the closer I had to be to my toilet until I finally cried “uncle!!” and told my doc I was afraid to leave the damn house!
This brings us up to 2010, when I moved to Merryland. I landed in the clinic of my new primary care with all of these records and she:
1) Immediately put me in for EFM (Exceptional Family Member status for the families of active duty.) (side note: I got EFM5, if you know what that means you get it. But Chief is retired now, so it doesn’t really matter anymore.)
2) Filled out all my paperwork to get me a disabled placard. She was incensed that no-one else had handled that based on my hip replacement alone.
3) Filled out the paperwork that would allow me to ask for my student loans to be discharged since I now was “officially disabled” and could not work.
4) Referred me to an actual pain management clinic for the first time.
In 2011, I was under some form of anesthesia 13 times for procedures. One for a cystoscopy, the other 12 for various shots into my C-spine. So, anyone can see that I was willing to put myself through just about anything to try to feel better.
Late 2010, early 2011 is when I was finally allowed to have long term pain medication prescribed to me.
Now, I have 6 monthly prescriptions from my pain clinic and neurologist. Three of those I physically have to go pick up the prescription and take it to the pharmacy. Everything is tracked and followed. My doctors and my pharmacists work with me and everybody reports everything to everyone else AND the insurance company.I follow all their rules, jump through all their hoops, never miss or reschedule an appointment with my pain clinic, and I submit to urine tests when mandated.
I follow all their embarrassing, humiliating, difficult rules and jump through the hoops because the pain meds I get allow me to function most of the time. They allow me to run my house and homeschool my child.
That’s all I want to do is live my life, so I play their games.
THIS is the face of a chronic pain patient:
Trigeminal Meningioma, left side diagnosed 06/2014 ; Congenital Hip Dysplasia corrected with a Birmingham total hip replacement 11/2007 ; Migraines, Trigeminal Neuropathy, Fibromyalgia, and nerve damage present in both arms.
I am not an addict. I am not a junkie. I’m a mother, a sister, a wife, a best friend, a daughter. And I just want to try to live the life I have left. And I need my meds to try to do that.