Surviving a Chronic Illness Life requires a lot of time and energy - it's a full time job.
I'm in my 40's, married to my bestie and soulmate for 25 years. We have 4 amazing kids who are now young adults. I'm an RN but no longer able to practice due to my health. Everyday I battle Chronic Migraine, Rheumatoid Arthritis, Sacroiliac/lower back issues, Depression & Anxiety.
For so long I felt so alone, and it nearly killed me. Connecting to the Chronically fabulous community saved my life and I would only hope no one else go through that loneliness and anguish.
This is not the life I expected, but it is My Beautiful Migraine... and everyday I strive to learn and love. Making art through graphics, words and photographs is something creative I can do in my suffering time in bed. It's therapeutic and gives My Beautiful Migraine "voice."
Thanks for reading! :D
Truth is humbling and embarrassing. You get it when you *get it.*
I remember in my later 30’s when I felt my normal life slipping away, a Saturday where I suddenly could not complete my weekend to do list – collapsing in bed face first I wailed dramatically to my Marc: “What is happening to me!?”
Piercings with my girls today! I love a piercing to represent each year I have been chronic… my little way of making an Invisible Illness, visible.
Most birthdays just melt right into the next… but I was hoping 50 would stand out. Lol. That’s for sure! Here’s the story:
We’ve been a little sick for a week: runny nose, cough, scratchy throat. Covid home test neg! Fever started yesterday. I thought Marc was silly for testing AGAIN this evening.
So we decided to head to the ER for some treatment… both of us in our 50’s and me with my chronic conditions and compromised immunity…
No wait at the ER and nice staff. They swabbed us again, took brief histories and agreed to prescribe Tessalon Perles and Paxlovid! Hooray! Now to find a 24 hour pharma WITH some Paxlovid stock! (Joe only purchased 20 million doses for the country!)
The ER staff informed us that the Walgreens at William Cannon had stock yesterday… so we called to check while driving there and – YES! They had stock!
Script filled in 30 min and we were on our way home to start our antiviral!
Our symptoms are pretty mild, compared to some influenzas I’ve had in the past. Sense of smell and taste intact. Guess it was only a matter of time before we got the Rona. Maybe our vaccines and booster is helping but I can’t WAIT for the next Gen of vaccines, personally. Although we’ll have Natch Immunities now which will be awesome! We’re taking zinc, vit D and baby Aspirin, besides Loratidine, NSAIDS, and nose sprays.
Most birthdays just melt into the next! This one will be memorable!
Addiction is real. A real mental disorder that deserves care and understanding and action. But thus present US govt stance on Opiates (and growing number of other drug classss), there is a terrible disservice done to Addiction, Tools of dealing with Pain, Chronic Pain – EVERYONE.
Opiates and other medications are simply tools. They are not killers, they are not evil, and everyone reacts very differently to medications. Allowing our US legislators free reign to make laws regarding these tools, we invite individuals who know NOTHING about Healthcare our OUR individual health care into our chart, our PRIVATE lives. No no no no no!
I am not unsympathetic to human beings who have lost their lives to opiates – in whatever their capacity – illegal fentanyl, overdosing on prescriptions, etc. Every loss of life is tragic. There is a process where our country could be more careful with opiates. But it’s a no-go inserting government into a patient-doctor relationship. My doctor and I know the tools to care for my health. The US legislator does NOT.
To me, there is only a Libertarian POV for medical care. Not everyone is an Addict. The population should not be scared to death about treating temporary or chronic pain. Doctors’ licensing shouldn’t be threatened for good and appropriate healthcare. The government does not belong in between me and my physician.
I cannot wait for the pendulum to sway back to Sanity. Get the government OUT of my healthcare!
Addiction is real. It is NOT the same thing as Dependence. Not everyone is even on the spectrum of Addiction potential! Treating a medication as an evil thing is just dumb; medication is a tool. And mistreating temporary and chronic pain inadequately because of a creation of an Opiate War is criminal. Advocate for genuine, positive, individual, wellness-oriented, collaborative patient healthcare.
Haven’t really blogged in awhile. I have so many ideas for pointless storeytelling posts. And maybe someday I’ll get them to print. Once… not too long ago, I fancied myself an #AuthortAt49. As my present age of forty-nine is nearly sunsetted, it’s a fact that I’ve done the leanest writing in my life.
The amount of #sucking I exude… emanate… radiate… is dangerously toxic. Run away. RUN. AWAY. Far away. Run fast. If you come into contact with me for more than 15 min, take a hot shower and scrub with lye.
There’s a song for that:
With a taste of your lips, I’m on a ride
You’re toxic, I’m slippin’ under
With a taste of a poison paradise
I’m addicted to you
Don’t you know that you’re toxic?
And I love what you do
Don’t you know that you’re toxic?
It’s Brittany, britch..
So why the Diva Donna Sound of Silence? Too much to write about… ✔ plenty of time to write….✔complete lack of motivation… ✔ unsual, nonstop, under-controlled PAIN and symptoms… ✔
I spend normal waking hours professional TV watching. And literally writhing in pain in bed, doing the RA Weird Bed Stretch, sleeping ungodly amounts of time. Tears… and more tears. Drip💧 drip💧 drip💧
I’m just BARELY existing. Have been coughing from allergies since November (inhaler, nose sprays for treatment). Bizarre sky high BP for a couple months (~150/95)
It’s pretty obvious I will have to go on a cardiac BP migraine prevention med again – I was on Nadolol for years for migraine prevention. It never did shit for migraine but I wasn’t hypertensive then. And now my migraine clusters feel very related to my high BP. And I cough with allergies… and crap, my head explodes with pain with each cough💥 cough💥 cough💥
Please no more. The tears start and they don’t stop. I’m crying and crying.
Marc and I quibble and argue about stupid stuff. It’s the same circular train. 1) “Money is tight,” states Marc. Translation: Donna, you literally contribute NOTHING to the marriage & our children’s lives. You’re worth more dead than alive. Strangely and for no reason that I can connect, this conversation and translation leads me to become silent and distant. Kind of like I want to walk off the nearest 55 foot cliff to my death. The next part of the part of Marc’s conversation is, 2) “Can we never TALK about this without you getting upset?” Marc bewildering asks. Not a prob; let’s just get passed the next sentences of me being a big fat burden so we can talk more about not spending money. Which I think we already discussed? Because this is a conversation we’ve had for the last 22 years. And, frankly, it’s BORING. It’s tiresome. And the same exact conversation. And round and round the train goes…
Don’t mind me… I’m just existing in bed 23 hours a day. Vegetation grows inside me, replacing my vital organs… vegetation alongside me, roots form and burrow underneath me, replacing my veins and growing into the mattress, my wings are broken, they are ripped out of their sockets and hacked to bloody stumps. I am a plant stuck. Joy is waning, Joy is untouchable.
As I’m existing here… I lay on my right side… head propped on soft pillows, slice of pain starts at the top of my right head and travels down to my ear. There is a flowering of some beautiful pain in my right temple. My hands hurt… it’s like on a cellular level… the cells of my hands and fingers hurt. How dumb is that? The same cellular pain is in my feet… their joints, and muscle tissue. If I keep them still, maybe I’ll notice it less. The pain up my right thigh and lower back is different and more intense. But overall, there is this covering… like a web or large linen cloth – it envelopes my entire non-ethereal person. It is so present… it reminds me I cannot move… I cannot breathe… there is no me, only a linen sack of body. The tears drip out of my non-ethereal eyes. Drip💧 drip💧 drip💧 Flow. They’ll never stop. All Joy is gone. I’m alone in The Dark Hole. People I loved have left me, turned their backs on me. I can scroll my contact list and it is full of strangers and people I only used to know.
At present, Ukraine is being bombed to rubble. One day Ukraine is wining the war, the next day Russia is. My fav journalist Ben Hall has lost limbs but is alive. Biden says you can’t buy a cannon. Kamala is under the spell of the Significance of the Passage of Time. Boris Johnson (PM UK) toured Kiev with Volodymyr Zelenskyy (Pres Ukraine). Optically, it looked majestic. My dearest niece in law (42) just lost her little bean baby… an IVF baby 11 weeks and the heart stopped beating. Her D&E was Sunday. Courtney rolled her ankle and is in a boot for weeks. I don’t know if Corey is ok. I don’t know if Nick is ok. Robyn seems ok. She broke up with her new boyfriend a couple days ago and is sad. Courtney’s bestie broke with her BF after 7.5 years and she is hurting. Sue sends Dave letters showing she is still firmly chaining herself to her personal constructed Hell Loop and I can’t even imagine the PAIN she is creating for herself. She holds the key to her release but won’t release herself. Eric Adams (mayor NYC) has pulled down the mask mandates EXCEPT for children 2-4 years old. Those babies may not even be potty trained (and certainly they are NOT spreading covid) but they must wear a face mask. I can get another covid vax booster, but I don’t WANT the SAME vax – I want one with updated strains, for crissake. In Florida, insane people don’t want a law passed that doesn’t allow sexual/gender discussion in K-3rd grade. Disney is at war with Ron DeSantis. There’s been a terrible shooting in NYC subway – shooter is not caught yet. China is shutting down for a new strain of covid… yet there has been one death. The world is in ruins. Like the rubble and ruins of Ukraine. There is no Joy. There is only great Sadness. I’m losing friends… I have nothing to give…. my circle of Life closes in and I’m fashioning myself a Recluse. I used to always be sure in the bond with my husband. Just a few days ago, we were holding each other. And now…
There’s a little black spot on the sun today (That’s my soul up there) It’s the same old thing as yesterday … I have stood here before inside the pouring rain, With the world turning circles running ’round my brain, I guess I’m always hoping that you’ll end this reign, But it’s my destiny to be the king of pain.
My son is going through a terrible mental trial right now. It has affected his health and he’s gained weight. He started slipping away and into a mask when he was 15/16. He is 22 now. I became quite alarmed during covid lockdown as he seemed to be getting worse – more distantand disengaged. We made him connect with a counselor in January 2020 and he admits she saved his life when we could not.
He has bottomed out as far as self worth. And it affected his college grades very negatively. He lost his major, he lost his job. But he is still facing each day and the demons of depression and anxiety. Friends and family have sent him encouraging letters, we’ve worked with him daily, weekly, with his self worth, screaming the message that he is worthy and things will get better.
He says he’s doing well with grades this semester and he continues working with his counselor. He is no longer self harming but has a lot of weight to lose – for his health and for his self esteem.
Tonight my mom asked how he was doing. I told her he wears his unhappiness on the outside. She said: “He really is such a good looking guy – under that blubber.”
Wow. Lady. I sometimes think my kids would be better off with no grandparents at all. Jesus, do people even hear themselves?
I’ve spent a lifetime trying to protect them, love them, learn about their unique souls, their dreams, their passions. I’ve tried to keep them alive and grow into good humans. All the while… I need to protect them from hearing horrible insults from people who are supposed to love them.
And my mother had WONDERFUL grandparents! They adored her and spoiled her. They were very special people in her life! How does that even make any sense?
Sometimes I lament aloud with my peers about how difficult life has been with my mother. I can always count on someone in the room countering my lament with something like: “Oh you are so lucky to have a mother! I would give anything just to have 5 more minutes with my mother.” (Because their wonderful mother died from a horrible illness when they were like 10, or something. *Roll eyes*) Gah, take MY mother! Please!
Botox Day is HERE! 🎄🎁💉 It’s here! It’s here! One of the 4 most happiest days of the year! Migraines have been an incredible battle the past several weeks R/T weather patterns. And we are supposed to get a nasty storm today… Next #BotoxforChronicMigraine is June!💉 The day of Botox is a sacred day. It isn’t particularly “painful,” but my body and soul feel “violated” by the 40+ tiny subcutaneous injections. So there is an exhaustion accompanied with the procedure… as well as a migraine triggered. When I first started botox over a decade ago, I had no problem going to work right after, or grocery shopping, or whatever. As I get further into my #ChronicMigraine and #ChronicIllness adventure, I seem to need the remainder of botox day for rest, recovery & low activity. It’s important to keep your head elevated and not to rub injection sites for several hours post procedure.👍🏼 The medication starts to work appropriately 5-10 days post injections.💉 My neuro and I plan to add oral Nurtec as a migraine prevention as soon as my insurance submits… this will be a long process of prior authorizations and one-on-one’s between my provider and insurance. Huzzah! Thankfully my neuro is dedicated. 💜❤💜 And I have duck boots now. My mom never got them for me when they were popular when I was a teen. So I’m hitting them up this time in the wonderful cyclical fashion wheel👢 #WaitingRoomShoePic
The fact that I’ve fought for kids for years didn’t matter. That I was just citing facts didn’t matter. The head of HR told me personally that even though I was right about the schools, that it was classist and racist that public schools stayed shut while private schools were open, and that I was probably right about everything else, I still shouldn’t say so. I kept thinking: Why shouldn’t I?
I refused to stop talking. I kept calling out hypocritical and unproven policies, I met with the mayor’s office, and eventually uprooted my entire life in California—I’d lived there for over 30 years—and moved my family to Denver so that my kindergartner could finally experience real school.
People think of Migraine as “a bad headache.” It’s hard to explain the entire systemic experience. Probably because once chronic, your body in a constant state of “fight or flight,” or prodrome/postdrome cycles.
*Exhaustion *Lethargy *Generalized body pain *Sweating *Impaired thermoregulation *Nausea *Altered appetite *Depression *Anxiety *Throbbing head pain *mild to moderate heat pain