#AmericanMigraineFoundation #ChronicMigraine #MigraineAwareness #AMF #SpeakYourMigraine

Yay for Rheumatoid Day!!
It’s not JUST arthritis and it’s not JUST pain! Rheumatoid is an autoimmune… and your body is constantly trying to kick your own ass. Brilliant!

I’d like to discuss EARLY WARNING SIGNS. Because I knew the signs, knew autoimmune was in my family history, and had a good rapport with my doc, I was very lucky to be diagnosed EARLY. I found an amazing Rheumatologist (docs who specialize in autoimmune) and I keep regular appts. Docs rarely give you the”full story” about symptoms and joining an online patient support group can help you make sense of your Chronic Illness.
In 2010, I first started suspecting there was SOMETHING else besides Chronic Migraine happening. How could CM alone make me so unbelievably EXHAUSTED. All. The. Time!? It just didn’t add up.
After our stressful family move in 2013, I noticed symmetrical joint swelling and soreness and asked my doc for more tests.
I remember I cried when I found out the results… I was happy to have answers but very sad to be diagnosed with a progressive, lifelong disease.
Prayers of strength & validation to the Warriors! 💜💙💜

#RheumatoidArthritis #rheumatoidarthritisawareness #RAAwareness
#ChronicIllness #Automimmune

I mostly focus on my Migraines… they scream for most of my attention! However, RA is ALWAYS ALWAYS present… it definitely makes my migraines more complicated and often it’s difficult to know what’s triggering my exhaustion – RA or CM?? And what does it matter because I can’t get out of bed anyway??😂😂😂
I can’t use my hands the way I used to; trimming rose bushes, chopping food with my knives, even Shutterfly photo booking hurts (track pad)… I have to sit more at parties because I LOVE my shoes too much not to wear them. Stubb’s standing concerts are completely out of the question anymore. I adore my ice and heat booties and heating pad for RA owies. I walk around the house in thick sole shoes because of my RA feet and toes, where I used to be barefoot all the time. Everyone helps me open cans and jars. Every 2 weeks I take my biologic injectable and nightly I take my supplements and meds for RA.
I feel it everyday I get out of bed… my feet feel like they’ll shatter and every joint is screaming. Somehow it is easier to push thru most of the symptoms, whereas a knife in the right side of my brain may bring me to my knees.
Well, actually I usually push through that too.😂

I also think I talk more about CM because it is less understood (everyone knows someone with episodic migraine, but CHRONIC is another beast entirely). CM has a bad stigma and receives a tiny amount of funding.
Whereas, RA is a little more understood by the general public (just a little) and definitely gets more funding and less stigma!

BUT on RA Awareness Day, it’s ALL RA, ALL DAY!😂 💜💙💜 (Sit yourself in the back of the bus, Chronic Migraine!!)

https://themighty.com/2019/05/what-er-staff-should-know-about-chronic-pain/

I went to the ER once in 2008 for a 6 day migraine. I was vomiting and couldn’t break the cycle. I had almost none of the meds I have now for emergencies. I was treated very well and left with a pain level at 3.

I was becoming chronic in 2007/8. When I found both my feet in this strange alter-life by 2013/14, I knew I would never visit an ER for a pain flare again. I know how the majority of nurses and docs think – I’ve been on their side of the chart. And I know the prejudice they have at Chronic Pain patients. They don’t understand, and I cannot blame them. Chronic patients don’t fit pain models… square pegs in round holes. How does a Normal person really understand living in a constant state of pain – a “good day” is a level 3/4? A “good day” I can get out of bed before noon…

The article reminds me of a recent visit to a new primary doc.

Recently, I went in as my allergies had gotten so bad I could tell I was hours away from an infected ear or throat.

My last primary was great. I can’t go to her any longer because she changed her practice to a la cart and won’t take insurance. 😕 I can no longer afford her. She’s like the 4th doc I’ve lost since moving to Texas in 2013. Healthcare is killing docs. It’s horrible.

Anyway, sitting on the exam table, waiting for the new primary: A. Pratt. I pulled in my feet to sit cross cross (always most comfy for my chronic back). I had my phone at the ready to discuss my lists of present illness symptoms and chronic conditions. I practiced breathing, looking around the office, curbing my anxieties. What would this chick be like? Would she be comfortable taking me on with all my chronic shit? Would she give me the cold shoulder and would I face the prejudices? And damn, my throat was hurting, I had complete laryngitis for almost a week, I could feel the clicking as my ears were filling with fluid and on the verge of infection, my migraine was chugging along (sick as a dog too) and making my eyes feel like open wounds. I wore my Axon Optics; the fluorescents in the exam room were bastards.

A. Pratt did not keep me waiting long. She was pleasant. Shook my hand (too hard… tip off: she isn’t practiced with RA patients). After a few pleasantries (me croaking out/whispering answers with my laryngitis), she sat down and said, “My! You’re on a lot of meds.”

😶 My reaction, my face.

And finally: “Oh yeah? Sorry about that. I don’t enjoy taking any of them.” Tip off: she doesn’t like that I take a “lot” of meds. Greeeeeat. Which should I discontinue? The Humira? The Synthroid?😕 I hastened to add: “I see specialists for almost ALL my medications, but I need a primary for when I’m sick… like NOW.” (It’s true: my primary ONLY prescribes allergy medicine and a tiny diuretic. That’s IT. Lol.

A. Pratt gave me a decent exam. A little whimpy… definitely not as thorough as my last great primary. She sat down again to discuss our plan. She would prescribe a Z pack because while I wasn’t truly infected yet, the concerning symptoms were lasting too long. Good answer, doc. Not that I’m judging. Yes, I’m judging. Your taking a test right now. And if I don’t think you’re good enough, you won’t get the privilege of knowing me.

She suggested a steroid pack for the allergies/cold too. Good call. I expected her to write for a steroid taper pack. INSTEAD, she instructed me to use my prn prednisone (prescribed for RA flares) as a “steroid pack.” Hello? That’s just LAZY doctoring. Tip off: as a physician, you realize a chronic patient’s meds are not interchangeable. That prednisone has a purpose that is NOT for this cold. Classic classic chronic prejudice from a doc.

Then, we talked more about my cough. Which especially SUCKED at night. Know what would be GREAT? A small script of cough medicine with codeine. That rocks for helping one stop the night coughing and go to sleep. A. Pratt thought about that, “Well you have other pain medications here. They should work for the cough.” Boom. Tip off: she just totally crossed an unbelievable boundary there. That pain medicine is prescribed for my S/I, RA and CM. This is very typical for chronic patients. Just because we may have some pain medications, it doesn’t mean we have enough for when we’re sick or have a short term problem arise! We ONLY HAVE ENOUGH TO LIVE WITH OUR CHRONIC CONDITIONS – and maybe not even enough for that! Totally unprofessional and total prejudice. Absolutely cruddy advice to give to a patient as well. You never instruct a patient to take their meds for other ailments. So prescription cough medicine wasn’t happening. Fine. Whatever.

While A. Pratt was kind and fine and will be a good primary for my husband… I may have to keep looking. She flagged a lot of basic issues with interacting with a patient with chronic illnesses. Which sucks and left me feeling judged and disappointed.

I did improve over the next week… the antibiotic fixed my ear fluid issue and throat in just a couple of days.

#ChronicPatients #ChronicIllness #InvisibleIllness #ChronicPain #WaitingRoomShoePic #ChronicMigraine #PatientsNotAddicts

It’s a bad phase

Sometimes my Migraine’s Migraine … gets a Migraine. And it sure isn’t a ton of fun. Medications and therapies fail or are inadequate.
Only mini coma sleep and time… lots and lots and lots of time… will heal.
Or sometimes a steroid pack. But of course prednisone is horrible.
No matter, friends! Turn that frown upside down … tomorrow I will open my eyes with energy🌞 The sun will greet me and I’ll be aware that I’ll have no or low Migraine symptoms …because Hope is the thing with Feathers🕊 … and never stops – at all.
If I have upcoming plans with you… rest assured, I’ll be there come hell or high water. You can count on me! …and #MyBeautifulMigraine
To anyone going through this … you are NOT ALONE – and I am so sorry for your struggle.😢 You are deserving of proper medical care and you are deserving of validation. I’m always here (literally, ALWAYS) to answer questions and offer support. 💜❤💜 I don’t often brag, but I am a Migraine Jedi. “I am One with the Force and the Force is with me.”

#ChronicMigraine #MigraineAwareness
#SpeakYourMigraine #RallyAgainstChronicMigraine

See you soon!💋💋💋

Chronic Migraine:
Take a normal life, marinade in incredible pain, turn it inside out, flatten
with mallet, chop into pieces, then freeze.
Garnish with guilt, shame, depression, feelings of uselessness & anxiety.
Serve with generous amount of horrible neurological symptoms, social
stigma & misinformation.
Enjoy!

#ChronicMigraine #MigraineAwareness #SpeakYourMigraine

It’s the car crash you never saw coming. The train derailment. The robbery.
And your heart breaks over and over again as you try the new thing that may be the IT that restores your life. The life you were living… where you were human, contributed to civilization, society, and your family. Can you even remember what that life felt like? Remember, you could speak in full sentences and take a shower without having to rest…
Your friends and armor: Faith and Hope… are they still at your side? Today is a cacophony of tears. It’s too many days stuck in bed. Pain flaring, exhaustion overwhelming. I don’t have the energy to shower or wash my hair. Our weather sucks (rain) and allergies are soaring… I am an abundance of uselessness.

#ChronicMigraine #MigraineAwareness #SpeakYourMigraine

djk #MyBeautifulMigraine

I wish I could still write like this. This article is PERFECT, concise, and accurate. Thank you!

https://migraine.com/living-migraine/9-things-people-with-want/

100% I realize people mean no harm at all… it is in fact, very thoughtful to bring up migraine in conversation.

💜❤💜

“I wish I could stay at home every day like you” I’m trapped here and every single day I grieve the life I used to have.

“Yesterday I had a headache too” I am SO sorry as I don’t think ANYone should ever have to endure head pain, but migraines and headache aren’t the same thing. When you compare them, it actually feels like you’re dismissing the neurologic disorder.

“You look fine to me, it can’t be that bad” I don’t want to look sick… if I walked around looking how I feel, I would look like a decaying zombie dragging myself on the ground.

“Migraine? How’d you get that again?” This one I like… because it’s a genuine question and it shows interest. Answer: I got migraine from doing an inverted yoga pose for 2 weeks.😂 TRUE simple answer: genetics.

#ChronicMigraine #MigraineAwareness

… someone said about me recently. “And she has a lot of piercings.”

There are FOUR (4) magical days a year; BOTOX for Chronic Migraine days 🎁💉
☆40+ injections forehead, occipital, neck, shoulder, temples, jaw every 12 weeks x 7+ years (botox therapy helps decrease migraine intensity and length, makes migraines more responsive to abortives)
☆Personal statistics: average of 18 migraine events per month that last average of 1-3 days each. 0-1 days per month without migraine symptoms
☆”That will be $2179.02 today.”💸 Here ya go!💸😵
☆”She has a rather lot of piercings”🧐 Why yes, yes she does🤔 # years CHRONIC

ChronicMigraine #MigraineAwareness #BotoxforChronicMigraine

It feels like an overbearing parents or controlling partner that I constantly have to check in with and see if I am allowed to do something.

https://themighty.com/2018/11/description-of-what-chronic-pain-feels-like/