I never realized my hands could hurt this much. This is Rheumatoid Arthritis. My hands don’t look that strange – they look kinda normal.
But every bit of them is Pain. Even when they aren’t moving… or doing anything. There is Pain in each little joint. Pain in every small muscle. They feel bloated and large and foreign. How can every bit hurt? How is it possible?
Rheumatoid Arthritis creeped into my life. Slowly. Stealthily. It didn’t arrive with an announcement. It was like a sinister villain who started tiny and grew.
Why had I stopped using my favorite knives to chop and cook? I couldn’t remember. Why was I no longer attending my roses? I couldn’t remember. Why did I no longer use a keyboard to write? I couldn’t remember. Why did my hands and feet swell and hurt so frequently? I would have to sleuth out the reason.
I was diagnosed with RA in the summer of 2013. But as I look back, it had been showing its face and creeping into my body and life at least in 2010.
My rheumatologist would later praise: we caught this early. That’s really good.
But it doesn’t mean RA goes away. She’s here to stay. She is a permanent resident. She can go into remission. She can flare. She can be tucked into a corner or scream and tantrum for attention. She’s part of me and we learn to live together.
My parents went to bed at 9 tonight while I finished some graphic work (for my cosmetic biz). I’ve been sorting and managing their healthcare since I’ve been here: Mom GI for Microscopic Colitis, Retina Specialist for blindness and misdiagnosis, Nuero for possible Parkinsons, orthopedic for back pain. Dad for derm. Both of them need a dentist and new GP Internist. And many more!
I’ve been begging decades to do this; to salvage her eyesight before it was lost (it is), to help get them services they need and that are available to them. But she refused and thus, he refused. “Kaiser Permanente is just so amazing!” She would declare 1996-2019. Even though they’ve misdiagnosed her. Left my dad in need with bizarre pain. Let her go blind.
Yes, fucking BLIND.
Ah, ya love to see it. These scans deteriorated and no one did shit. She has between 11-16% vision in each eye. Well done, Kaiser! Oh so well done!
Finally was able to crack my dad’s concern about this odd but upsetting LLQ pain … trying to get concise history and symptom story from him is beyond challenging, Mr tangent stream of conscience. Anyway, 4 years later and I finally HEAR him express a specific concern: “my mother had ovarian cancer and I wanted to make sure there wasn’t a mass in my colon.”
Wait! What??? Do you mean to tell me you’ve been worried about colon cancer the last 5 years… despite every test known to man being fine!? Why! Why didn’t you just tell me that!? The idea he has been stressing over something so easily ruled out troubles me. I’m sad that he’s been afraid and stressed for no reason. All of his tests have been fine. I explain cancer to him and roll play how he can communicate better with me and healthcare proffs.
As I’m talking to him about having to accept he may need to “listen to his body” and he can’t just jump up and do everything that he did in his 30s, Gail comes wandering in the kitchen. She announced 6 min ago she was going down for a nap.
She can’t find her phone. It’s next to her bed. But then… Dad has to come make her headphones work, she’s yelling from the other room. He comes back out and I can keep talking to him. She’s up and wandering again in 4 minutes. It’s something else. Glasses? Her audio book has stopped?
Then I teach my dad the meaning of FOMO.
So because they wouldn’t let me do this for them in 2007/8 when I worked as an RN in Tucson and they were BOTH thirteen years spryer, less frail, with fewer health issues, I’m wading through absolute shit now. I’ve been away from Tucson healthcare for 9 years. Humana customer service is actually staffed by simpletons (they actually gave me the name of an acupuncturist for a orthopedic.🤦🏻♀️ wow, that’s competence.)
Anyway… I’ve been through every file today and created appointments and clear pathways to healthcare success. It’s better when Gail is out of the house so I can speak on the phone without her yelling wrong information at me from the kitchen. Tomorrow I’ll need to fill out new patient paperwork and figure out this neuro for her. It will just take some time. More time.
Later we watch TV together. The couches are a couple months new so we sit outside the living room to snack or have a drink because Gail doesn’t allow anyone to have food while sitting on them. Oh yeah… that’s a THING isn’t it?
I’ve already had a scolding on day one when I sat on the couch with my half cup coffee. I used the coffee table to rest my glass. That wasn’t allowed. I’ve been cuddling laying on my side on the couches every once in awhile too. Wonder if that’s been frowned on? I don’t effing care. It’s a fucking couch. Gail hasn’t said anything… yet.
So there we all are in other rooms watching the TV in the living room – which is about 20 feet away. We look like a bunch of assholes. Later Gail frets what they’ll do if they have a party; people will expect to drink and sit on the couch. Maybe she’ll need a sign or plastic on the couch?
When my nephew was very small, he once said to Gail: “Nanie, it’s almost like you love your THINGS more than you love us.”
She tells that story all the time. About how furious it made her. “How could he say that? I wanted to bop him!”
Well no shit, Sherlock. That little boy was 100% legit on the money. Nanie, you love your THINGS more than you love us. And you keep telling that story about your grandson… make sure everyone hears it. Their response will be perfect. She doesn’t even see it; AH-MAZ-INGGGG.
Then she announces at 8pm it’s bedtime. I’m going to stay up and watch a show with my dad while he does sudoku. He loves loves it. We are laughing at the TV together.
Gail putters out. Does she need something? Her phone. “It’s right by your hand. No, where your hand was. Just there. Reach and touch it.” She retrieves it and pouts because dad and I are doing something simple without her. Less than 5 minutes pass and she wanders out again: “Don I can’t find my night cream. Can you PLEASE find it for me under my sink!?”
I am well aware all this behavior is not due to blindness. There is something much deeper happening. Blind people don’t lose track of their phones. They can find night creams. They don’t bump into things in their house everyday. They don’t shuffle. They aren’t needy for Every. Fucking. Thing. They don’t demand you STOP everything you’re doing to assist them with something trivial. None of this is blindness. This is something else completely. Something that was born in her youth from terrible trauma of an abusive mother and a negligent father. It’s retarded her emotional age to that of a kindergartener. And there it remains… forever and always. The gift that keeps giving to all. Everyone around her needs therapy because the abuse is so saturated with toxicity, there isn’t any oxygen at all.
But I’ve got decades of therapy on my side. A recent mantra of: it is my choice to ENGAGE or NOT. I do not have to engage. She may have programmed the very buttons she knows how to PUSH in me, but I am sentient and not without my own WILL. And that will keep til I yeet outta here at 04:00 Sat AM.
After she’s completely ruined any time for my dad and me… instead of bed, she’s also come out to read an email to us and demanded we look at it with her. She’s fluffed the pillows on the stupid fucking couch even though I said I would do them. And what else? Idk but it was rude and unbelievable.
So then … my adventure: My parents went to bed at 9 while I finished some graphic work (for my cosmetic biz). I’m texting my brother, making graphics, winding down. Gail pops in the guest room door AGAIN. She wants to say goodnight.
Awww! Out of kindness? Um, N O P E.
It is my choice to ENGAGE or NOT. I do not have to engage. I am sentient and not without my own WILL. Donna dear, BITE DOWN the snark and “here’s what I really think of your absurd and childish behavior.”Swallow it down… like a jagged little pill. It feels so good… swimming in your stomach.
“Goodnight, Mom! Sleep very well! I think I’ll take a quick shower in a bit.”
She leaves. But I can hear her yelling at my dad to “come to bed now,” “take the dog out,” “bring that to me,” “hurry up, Don.”
And I want someone to shoot me if I ever become this. This. Is intolerable and Exhausting. Their day is as follows: 06:00 Up with dog, breakfast. 08:00 dad walks dog. Home. Dad walks mom. Home. Dad walks neighbor. Home. 09:30-10:30 Coffee and cookies (or trail mix – which Gail refuses to call trail mix… it is “GORP” – the term she learned in the ’80’s. Maybe the GORP goes in her POCKETBOOK? Ai yi yi) 10:30-12 Don may putter fixing the house and enjoying his gardens or working on projects for Gail while she sits at the computer and yells at it because it won’t do anything right. Less than a decade ago, she would use a computer successfully everyday as my dad’s office manager. Thanks, Kaiser.Main Meal prep can start anytime after 11:00 with Gail barking orders, demanding help… all while Don sets about readying the Supper. They bicker and get on each others nerves.. I somehow doubt this performance is just for me.. It’s about noon when we have to sit at the kitchen table for Main Meal (and don’t question this routine or practice because deviance is not tolerated. Explanations are not ever required. This is The Way. So just shut it.) Main Meal and the infantile schedule trumps all. As the guest, I have to sit in the middle so I can have the view (the view of the fucking street. With sun.) Yay, we know how sun helps my migraine brain. After Main Meal, Don needs to sit and digest with soduko. He has GERD and bending to load a dishwasher is very stupid. Gail won’t let him just SIT so she loads the dishwasher carrying on and martying herself. Because the dishes MUST get done, although she is making a mess. 13:00-16:00 is rest time and free time. Maybe errands or more screaming at the computer. 14:00-15:30 is pool time for Gail since she discovered a couple weeks ago that she has lost the ability to swim at all. Don admits to me that he hates pool time but he does it for his happy wife. He has to stand with her at the pool so she doesn’t go under. She is convinced this is the way to regain strength. The Way. 16:00-20:00 is Supper Time… a small meal, wine and TV time – Gail gets to pick the TV, Don would rather watch news. Gail doesn’t want to watch news. So they don’t watch the news. 20:00 is bedtime.
When my babies were very young… I put them on a schedule. It included meals and snacks, naps, toddler time. Exercise for me. Dinner, bath time… it was a thing. And the babies thrived because babies do well with a schedule. You know who also uses a daily schedule? Fucking nursing homes, that’s who.
Breathe, Donna. You can do this chica. This isn’t your life.
So I’m doing my case management thing: calls, searches, web searches, writing up questions, making appointments, collecting previous pertinent doc notes and tests. I’ve been planning this trip since the summer. My babes would be at school and I could drive here and work a week on this mess. Get it in SOME order… feel like I helped out a little… even though I’m still bummed this would have been easier a decade ago, darn-it-all. My parents are super impressed by my charts and flow sheets. By all my calls. My brothers comment that they are grateful I’m doing all this. All the time I’m drinking my coffee, avoiding the NEW COUCHES, missing my empty nester hubbie boo boo (who Gail laments could have spent time with Don!!! – probably because I am not allowed to spend time with him. Duh.) My kids are texting me from school and vacation… and I’m adoring that they haven’t abandoned me here. My babies. Love them tight. Also my brother texts and calls me. Their texts buck THE SCHEDULE and keeps me sane. Life finds a Way.
It’s nice for everyone to be impressed with the medical case management but this is what I do and what I was born to do. I’ve done it for myself, my husband, my children, my friends, others in need. Gail thinks I should do this for a job. I tell her that’s nice of her to say, but no one would pay for it. And besides, I can’t even get my family to purchase my best cosmetics and skin care and support my legit biz. *cough cough* Gail… ” who would pay me?”
My friend Aimee has also mentioned this to me. As if there’s this job out there that I could create, save people, explain their healthcare and help them navigate while advocating for them. I miss being a real nurse. 👩🏻⚕️🩺💉🏥
So I finish up my work. Head for the guest bath and a quick shower. It’s now 22:00.
Well… the toilet exploded. That’s an exaggeration… it overflowed when I flushed a tissue. Seriously… nothing but a fucking tissue…
Are you fucking kidding!? I’m naked about to step in shower. No clothes. No phone. No robe. I throw all the towels (except my shower one! Huzzah) at the floor to absorb seeping water. Holding inside toilet gadget up to stop water flow. I’m utterly and completely stuck.
Powerless. Alone. Did I mention naked? Wait. Swear quietly. (Don’t want to wake my folks – how could they help… I’m naked.)
My back is out. And I’m contorted in the bathroom naked.
Able to peak in the cabinet. No plunger. Swear creatively.
Wait. Swear. Repeat. Until…
Finally. Finally!!! The water in the toilet does that blurp and goes down the drain pipe like it should. I’m cleaning up all the water with every towel and throwing them in the sink. I’m going to take my shower. I’m crying in the shower from my back. It hurts so much. And it had been pretty good today. 😢
The pain intensifies, shoots, burns, cripples. And my tears are mixing with the shower. It’s like I’m upset about more than just my naked gymnastics during a toilet flooding for no goddamed reaaon.
Finish my quick shower.
More mopping with towels… it went further than I thought.
My sacroiliac and back feel as though they are snapping and shredding in 2. The crippling pain takes my fucking breath away and I know it’s here to stay.
Get dressed. My travel deodorant has run out and I have to try and find some in my parents’ medicine cabinet (it may be from 1986 and last used by my exSIL). Discovered – men’s deodorant. I use it; it’s actually very nice. Huh. 😌 My feet feel scuzzy. Trying not to get them full of scuzz potty water. Creative swearing.
Carry all the towels and bathmat (about 25 lbs) to clothes washer. Ai chi chi, my fucking hip and fucking back! Swear while loading the washer. Start the washer. Swear. Find swiffer and bring with 2 cloths to the bathroom. Clean floor. Clean sink with lysol cleaner. The bathroom is sparkling. Swear my ass off. Everything is drying. Put swiffer back. Machine is washing towels. Close laundry door. Fall into bed feeling awful. Hurting. Grossed out. Tired. Aching.
Swearing. I have my ice. My head hurts. Settle in to text my Marc❤ for love and support and to talk about his bday tomorrow. Quiet. Breathe. Mindfully remove the insane pain.
Trying to find SERENITY, NOW. What the actual?? It’s now past midnight.
Breathing into CÁLMETE. I can survive this stupid fucking stupid… thing?
I start to text my Lover, my fellow in crime, my partner of the Empty Nest.
There’s a sound: the fucking high pitched bizzzzzing of a fucking mosquito in this fucking house in the fucking desert… in my fucking ear. FucK!
By now, most people in the migraine community have heard of, if not tried, the CGRPs – a new approach in the prevention and treatment of migraine. After a bit of a drought in the development of effective medications for this prevalent condition, many migraineurs were lined up and chomping at the bit to see what all the hubbub was about. And there was quite a lot of buzz about this new treatment. The positive results from the trials were rumored to be significant and potentially life-changing.
A recurring question about CGRPs
It’s now been two years since the three variations of the CGRPs were introduced (Aimovig, Ajovy, and Emgality) and beyond the troubling stumbling block related to its high expense, one major question seems to keep reemerging: “Why does this treatment work so well for some and not others?”
CGRPs don’t work for everyone
Why not me? With hopes raised high by the success stories of others, many of our community members expressed disappointment after trying one of the CGRPs to no avail. Such a normal response to be let down after hearing about the dramatic improvement of others when you don’t achieve a similar outcome.
If at first you don’t succeed, try, try again. However, we have learned that not all CGRPs operate in the same way. So, if one of the three CGRPs is ineffective, it doesn’t necessarily mean that another will not work.
One size does not fit all with migraine
Of course, there’s also the potential outcome that none of the CGRP treatments will work for you. Or that, rather than stopping your attacks dramatically and entirely, this treatment may improve your condition just slightly. Migraine works so differently in all of us so that what is an effective strategy for one person can be completely ineffective for another.
A multipronged approach to migraine treatment
For most migraineurs, there is no such thing as a simple cure or easy fix. Rather, the most effective strategy is a multipronged one, involving multiple approaches which include various medications and countless life alterations (diet, sleep, and exercise) that, coupled together with time, effort, energy, and lots of patience, will result in a gradual improvement in this complex neurological condition that is migraine.
I wish the CGRPs had been the magic cure for me – I trialed Aimovig and Emgality before my insurance made me choose between CGRP or Botox. The CGRP migraine abortive Ubrevly has been quite helpful during attacks – about as reliable as triptans. But none of the preventative monthly injections worked. 😒
This is the most EXHAUSTING and FRUSTRATING part of Chronic Life. It started for me in 2010, I’d get to work and would be sleepwalking from 8 am until at least 12 noon. It was like the flu without fever and respiratory problems – just incredible achiness and complete exhaustion. Baffling, I researched and grilled my medical team. No answers. I’m almost 100% sure it’s related to Rheumatoid Arthritis and post/prodrome.
The most upsetting part is when I finally have a break from migraine, I want to do do do! But my body is made of concrete and I’m trying to move through quicksand.