I don’t take medicine to get high. I don’t remember ever getting “high” on medication. I take medicine to get put of bed, to feel like a Normal person with a bad flu. But this helps me live some kind of life.
See how I saunter… 🚶♀️🕺
So ready for a fill up today… it’s been a pretty rough summer for my fried brain. I don’t know why… the heat? The storms? I’ve been worse than usual. One greeeeeat thing is my neuro Mariah has altered my diagnoses so I can get more botox. This has been a godsend. My jaw gets so tight with Chronic Migraine that it feels like a slab of cement by botox time. Either it will break and explode or stay strong like steel. The extra Botox really softens the muscles. It’s actually noticable looking at my face.
My neuro practice is very good. They really work with me… they are always there for emergencies; I can usually get seen the same day, and they work with me when I’m ready to explore a new treatment.
However, sometimes the practice can be lacking in common sense.
Mariah has said some doozies but the very worst is the nurse. Sometimes she’s saccharine sweet, asking about “the family” and providing updates on her own family. Most of the time, however, she is downright unpleasant. I will say that Nurse Mary is an amazing stick for medications. But you never know which face she will show… it’s like a surprise party, but much less fun.
Today’s conversation went as follows:
Nurse Mary: “How long did your botox last this time?”
Me: “Only 8 weeks tops, so not so good.”
Nurse Mary: “It’s better than 4 weeks.”
Me: “This is true.” 🙄 (translation: no shit, Sherlock)
For real: #thingsNOTtosaytoaChronicMigraingeur
Yesterday I received another packet from Social Security Disability… informing us of the judge’s favorable judgment.
All these packets come with a self addressed envelope and the option to appeal.
Which I’m not appealing, obviously.
So… nothing new.
I’ve been disabled since Jan 2013. Filed first in April 2015. After multiple denials, I had a disability hearing with legal representation in May 2019. Notice from disability judge of favorable decision in June 2019. And now notice of notice of favorable decision in July 2019.
This is an interesting process, for sure.
This is not a good summer.
I’m on day 7 of this particular bender.
It’s so embarrassing… with my kiddos home, I can’t hide my struggling. Showering, getting dressed, getting out of bed… it’s all proving to be somewhat impossible.
Botox in T minus 3 days.
I can’t believe this.
Oh yes, I’ve become THAT kind of traveler!
It’s high time to use this amazing mask on a packed airplane. Not only does it help protect from migraine triggering odors but, more importantly, it can help my compromised immune system. This is a high grade reusable Air Mask that protects against air pollution, dmog, scent, sllergens and BACTERIA. Thank you #CambridgeMask for your generous donations to #RetreatMigrainePlus
Union Jack ramps my sexiness level x10. And while wearing said mask, no other travelers try to talk to me. An introvert’s Dream Come True!
This weekend was an amazing opportunity to get to my parents’ in Colorful Colorado while 2 of my brothers are visiting. 🙂 I was able to sneak in a 3 day visit without changing doc appts and also while managing kid appts!
On the first day, I woke nearly migraine-free and it was lovely. The air was sweet and clear, the sun was glorious, there were happy Bob Ross clouds. By afternoon, I felt the twinge… deep inside my brain. Just the twinge. It was beginning to weather. Darker clouds, zippier breeze winds, something approaching on the radar. After lunch with mom, I chilled in bed with medicine and Cefaly… 0 to migraine of unknown intensity in 15 min.
My mom (an episodic migraineur almost her entire life) asked me how I could ever avoid being triggered by weather.
It’s not something you can avoid… there will always be changes in weather.
Despite years of personal migraine experience and advocacy and education on my part, she has apparently just comprehended this conundrum at this moment in time. 💡
Luckily Mom at 76 and me at 47 keep the same pace as far as life. This amazes me far more than it does her. She was hiking in the Swiss Alps at 45, for fuck’s sake. Lmao. Anyhoo, her narcissism is more humorous than hurtful as her cognitive, vision, and kinesthetic abilities decline. Although she does continue to reject, mock and ignore any medical or wellness treatments I suggest. Decades of being laughed at and minimized have taken their toll on my heart and I must let it go. Despite her cognitive decline, she is a kung fu master at pushing the emotional response buttons in me that she herself installed from the moment of my birth. The game is exhausting and dumb and I catch myself volleying the ball into her court and that realization fills me with self loathing. I am free to put down the racquet and walk away… just walk away… anywhere. Years of therapy for self awareness and self kindness and my mom’s slipping cognitive abilities have helped my progress baby steps.
We exercised later. FINALLY she has found a gentle strength training/chair exercise DVD to work with. She must do this daily for increasing her core strength, her stamina, her balance, etc. While she worked heel to toe with the DVD, I did yoga right next to her. She never saw me. Lol.
We also took Bella on a short walk.
We ate together later, had Costco apple pie (which I’ve learned is very delicious) and decided on watching the Haunting of Hill House. I must choose something I’ve seen before because her constant questions and talking during the film will drive me bananas. Is there a rule that old people MUST talk during movies? And I don’t require silence or anything – I talk too! – it’s just the inappropriate talking that makes me cra.
After the episodes, I took care of Bella, my mom got ready for bed and we sat in her room talking and talking. Our topics went all over, from yoga to friends and it was nice. I bid her goodnight, went downstairs, washed my face, brushed my teeth, took my meds and went to bed.
She’s been hinting lately that someone has told her about my tattoos… and whenever she does that, I ignore and change the subject. I am artfully able to do that until the day I die. My tattoos aren’t something I want to share with my mother. Ever. I have them because of her, they aren’t sharing material with her. They’re mine alone.
I slept terrible that night. The wind was insane… it sounded like rain and I was worried that my mom made me leave the skylight open in their bathroom. Migraine and RA were joining in the insomnia fun too. My ice packs weren’t keeping up. I got the fan from the den to drown out wind noise and I ate the last piece of apple pie because it was freaking tasty. And I don’t even like pie!
The next morning I got up super early, took my AM meds, made coffee and emptied the dishwasher. Bella heard me. She came out for brekkie (hoping it was PopPop 😔 ) and I took care of her. Mom came out. We had breakfast leisurely in the same place Dad and she eat breakfast everyday.
But this was the second time in my time with her she and I were missing something important.
After breakfast, we planned going out later to shop (her most favorite thing in the world) because she needed some things for the upcoming weddings. I told her I had to go back to bed for a bit first because of my head. I first got Bella settled. Then, I took meds, slept an hour and then got ready. My mom was alone and on her own upstairs for 3 hours.
Leisurely we left. Their handicap plaquard is essential. I can park close to the store, get out and help her out of the car, hold her arm as we walk through the parking lot and into the stores. In the store, I can set her on a little shopping cart which she walks with as I steer. But she gets confused. I say, “Stay with the cart while I scoot to the next aisle to check if they have ***” She agrees. Not a minute later, I find her wandering, away from the cart. “Mom, you were supposed to stay with the cart.”
She answers, “Well it’s right over here. No, wait, where is the cart?” 🙄
We were able to get her a slip and some shoes. And the staff is super accommodating if I just tell them she is partially sighted. We even had lunch out at Olive Garden.
At this point I brought up meds and docs. She was shaking more than usual. And I haven’t been convinced by anything in her chart that she actually has Parkinson’s and not just Essential Tremor. I mentioned she might want to take an extra anxiety pill to counter the tremor as she is transitioning from one med to another, as per her new neuro. She mentioned she takes a med for anxiety 2x a day. Fine.
It monsooned on the way home. I’m still great at monsoon driving. But monsoon and my head… ouch.
Dad and my brothers got home soon after us. It was about this time we discovered the Big Problem I had overlooked: even tho my Dad had set out Mom’s pills on the counter, she hadn’t taken them either last night or this morning. No wonder she was shaking! I freaked. I scanned the list with my Dad and made up the meds she absolutely needed ASAP. She was probably experiencing some withdrawal symptoms – lightheaded, shaky, nausea, vertigo, etc. I advised she go to bed for the night. But she kept popping back up every 20 min or so to be with us.
Dad had given me detailed instructions on Bella care but hadn’t advised me Mom would not remember to take her medications (she’s been taking medications 2x day for decades). In truth, I don’t think my Dad realized she would not remember. I was freaking for awhile: blaming myself, questioning why she hadn’t remembered something so simple, etc.
She is slipping fast. My Dad cannot possibly be on beck and call 24/7. He needs respite care. They need inhome services, like cleaning help. She needs therapy: learning how to adjust her life to limited vision, especially.
But despite the many many times I talk about this or list it out, they won’t do it. They’ve been married to that asshole Kaiser Permanente for so long. And even though they are Medicare now, they still won’t leave Kaiser and go to an insurance provider that is accepted nationwide. This means 6 months in Arizona, they have nothing but emergency medical care. Insanity. And there’s no way for her and him to get consistent care and therapies. I’m so tired of this constant argument.
Anyway, I’ve been aware of her vision decline over the last 15 years. She spent many many years refusing to let me get her into specialists because of her commitment to Kaiser Permanente (which should NOT be an issue now that they are Medicare but they refuse to leave that crappy insurance union). Kaiser is notorious for their bad eye care. I’ve also been aware of her cognitive issues… which were mild but noticeable (the wandering, the confusion, suddenly unable to do basic computer/phone tasks she had no problem with before) over the last 6 years. And, the one sided shaking started a few months before Michael’s wedding. She also has refused physical and occupational therapy for adapting to her vision loss – this is because she doesn’t grasp the importance of it and they spend half the year in Arizona with no medical care and only emergency medical insurance, so no treatment gets ANY consistent care. And a few years ago, she began falling a LOT and it became clear that she is not safe alone. One time she took off her gold necklace and hung it on a nightlight with exposed socket, it sparked and almost caused a fire.
Toni and I have been able to read her medical charts with Kaiser and we have consent to speak with her doc and have done so. Her primary doc is very agreeable to different kinds of treatment but, AGAIN, Mom and Dad leave Colorado and medical care and therefore no program is consistent.
Really, Mom and Dad need to get OUT of Kaiser… they need a Medicare supplement insurance that is accepted all over the country (I think Dad plans on this eventually… and also plans eventually on selling the house in Colorado and living fulltime either in Arizona or somewhere else). The house in Colorado is full of dangers for her: hills, stairs, uneven saltillo tile, sunken livingroom and vast spaces. Mom cannot be left alone and Dad cannot be expected to do everything for her 24/7; he needs respite care desperately! Which means they need some kind of service inhome. They need better physicians and specialists. They need cleaning help. She needs consistent therapies that address her limited vision (blindness), cognitive issues, kinesthetic issues, anxiety, tremor. They need to start referring to Bella as a therapy dog so they can take her anywhere and she can provide that calming effect for Mom and Dad. Always fit and active, Mom has been neglecting her fitness for a couple years. She actually collapsed on a little hike 2 years ago in Colorado and Glen and I had to 2 person carry her a distance. Since that alarming experience, we’ve all been persistent that she do some exercise and specifically core strength training and balance. Finally, she’s recently found a DVD to follow for basic balance and chair strength and is doing that with some regularity.
I’m writing to you just to keep you informed. I’m not sure how much you know. And you certainly deserve to know what’s happening – like the rest of us do. Please don’t think I’m expecting you to do anything at all; but it’s important you’re kept apprised.
For a long long LONG time (probably since 2007) I tried to help where I could see their healthcare providers failing them; to case manage their care. As a nurse and involved in the Tucson healthcare scene, I was at a particular advantage. But they just fought me and refused my suggestions and refused to leave Kaiser (even tho Kaiser has basically “let” Mom go blind). It took me a long time to come to terms with the fact Mom and Dad are most certainly adults and can make their own life and health choices, no matter the cost to their quality of life. I had to let that go. Definitely, I will assist whenever they ask and whenever I can, but I cannot make healthcare plans for them anymore. And it breaks my heart to see her decline because of her stubbornness (or maybe now it is lack of understanding? I just don’t know.). At this point, she will not improve. But I would love to see them get the services they deserve and are entitled to. Rest assured, I have been over this with them both and explained what I believe they need (all the above) many many times and for many years. I’m not telling you anything new.
All in all, it was a great trip. Very nice to see everyone. I’m not so much enjoying this sandwich generation thing of caring for aging parents and children at the same time. Add to it my own myriad of health issues, and I’m just NOT capable of keeping up. I’m failing everyone and that isn’t helping anyone.
I went back home on Tuesday. Migraine following me from the mile high city to the live music capitol of the world. Again, my mask was a winner. With an earbud on an audiobook, solitaire on my phone and mask and glasses on, no one tries to talk to me. It’s an Introvert’s dream come true!
This odd and awful sacroiliac joint dysfunction and lumbar/sacral degeneration… is it from pregnancies, too many years compensating how I move? Is it from age or could it be related to my Rheumatoid? No one really knows. And solving its mysteries isn’t as important as treating it and living through it. At least, that is my doc’s plan.
Today was another Radiofrequency Nerve Ablation, right side lumbar 3/4. Marc drove me. I got admitted, saw anesthesia, Dr Michaud and was ready to go back to the OR.
I was developing a nasty migraine on the drive in… weather. It was weathering outside… the clouds were the wrong colors and the air was thick. By the time they took me back to OR, my migraine was at a 6.
I took my nap with Propofol and Fentanyl for 15 min. I used to do my back procedures without sedation. I was that strong.💪🏆 But I would get very nervous instead. Once another doc inserted the needle differently and I felt like I was being disemboweled on the table. Good times. My lord, that was a painful event! Also, I have a habit of vasovagal-ing right after the procedure: despite lying on a litter, my pressure drops ridiculously low, I’m covered in sweat and passing out. Idk why. I suspect the injections themselves have something to do with it. Anesthesia for the 15 min procedure and the required driver seem to fix all these problems.
I woke up fine. Got my favorite fruit punch juice boxes – 3! And some cheezits – 2! And Marc got me home before noon. The staff are the nicest I’ve ever met.
My sweet Boy Toy…
The Fentanyl was helping. But soon after getting home, my back started to burn and my migraine was ramping again.
I could tell my day was over. Medication, ice blanket for my back, ice wraps for my head, and bedrest.
I still managed to clean up after the Guinea pigs we’re pet sitting, change laundry, repeatedly scold teens for not doing their chores, and make dinner.
The storms rolled in a few hours later: violent storms… with lightning and loud thunder. We lost power for a second and our internet seems broken.
I’m back in bed. More medicine. And my head and back are crying mad.
I don’t love RFNA. I know from experience that the next few days will be really rough with terrible back pain. Then I may see some improvement.
In 2 weeks I’ll need to go back in for the other side. Sigh. 🙄
What’s worse than #ChronicMigraine ?
…when, despite treatments & medicines & rest & planning, I simply can NOT power through and do something I really, really, really want to. I simply can NOT get out of bed, not even crawl to an event I committed to & was looking forward to.
I am just so sorry… and just so sad. All I do is let people down. Why would anyone want to be friends with someone so unreliable, sick and …absent? It is terribly embarrassing and isolating. It’s just a shadow of a life.
I am just so sad. So sad …and so sorry.
It’s the Fourth of July. We’ve been invited to a culdesac celebration. I can’t leave the bedroom. I’ve tried everything and I will never go to the ER. I’ve sent my family off to the party with my deepest apologies. It’s time for an injection of sumatriptan and phenergan and a mini coma. Time to close and lock the bars of my head prison and perchance sleep away this intolerable episode.
How many times can you cancel before people stop asking to be friends?
Stuck on repeat, repeat, repeat…
My ice packs can’t keep up.
*O starz & O gartres!*
This has been a nasty nasty run… weather, allergies, whatever it is, it’s awful. Is my botox running out? Am I still trying to adjust to getting off the CGRPs? My head is a million degrees all the time, and the fatigue, malaise, and feeling like migraine crap.