This is a great article. It’s not exactly Marc and my experience… but it’s great advice: #1 Love your wife, HATE the migraine. There is SO MUCH MORE I’d do… if I could. #2 Never take it personally… pain and chronic pain and frustration makes even the most lovely person act “off.”
(P.S. I love when you wear cologne, Honey Baby!)
Our shelves are full of wonderful memories:
But some of my favorite pictures are the ones where I’m struggling and my Marc is right there WITH me…
And the myriad of appointments he has attended with me…
In this life, I can honestly say… I have known such a Great Love and True Soul Mate…
Today the migraine has continued to intensify… despite migraine medication, rest, and medication.
My head is easily a thousand degrees and my ice just sizzles and loses its chill after only a short time of contact with my skin. I’m nauseous but I must eat. If I don’t, the medication will do seriously bad things to my body. I’m so hot, even though it’s a normal temperature in the house. When I must move, I shuffle blindly. Everywhere the light is too bright, my entire body hurts and the throbbing pain and vertigo makes me terribly clumsy.
There’s no real reason for this migraine. And it’s just shocking; how can this be happening? My nervous system is just a an asshole. This started as a 4 this morning. Now at 4, it’s an 8. I have ice packs on both the back and front of my head, I’m sprawled in bed trying to find some decent position, I’ve gotten into pajamas.
I had plans today… house cleaning, laundry, making dinner, watching my new show tonight. I wanted to do them all. I wanted to visit with my family.
It’s all gone. All of it. Now I’m just a million degrees and trying not to hurl.
Addressing and ending the headache doctor shortage. The US has less than 1/6 the number of headache doctors it needs. By passing bill H.R.3414 and S.2892 and amending language to “approved headache fellowships,” instead of “residencies.”
With so few specialists, suffering patients must wait weeks and months for an appointment… in that untreated time, attacks can become chronic, symptoms worsen, and patients receive improper treatment. Alliance for Headache Disorders Advocacy #AHDA is asking for support of this bill – the Opioid Workforce Act – which is bipartisan. Because no one wants opioids around, right? Well… not quite. But while opioids are an amazing tool for pain, they aren’t at all the first choice for effective treatment of migraine.
This was my first year advocating at Headache on the Hill. I knew it would be amazing, but also push me to the very edges of my limits handling stress and stimuli. Dr. Ready was a HOH pro; he knew exactly where everything was and was amazing at explaining the legislation to staffers and representatives.
The day before in training (Monday) when I asked us all to tell our stories and get to know one another, someone asked him why he chose to go into headache medicine. To which he replied: “Among many other specialties, I found I can help headache patients get better.” (cue emotion: Donna immediately tears up at this)
We really were a good team at Headache on the Hill, if I do say so myself. I have indescribable admiration for these four absolutely amazing women who live with migraine disorder. Each of them have a story of horrible pain and symptoms, loss, and grief, but also a powerful determination to find the medical treatment they deserve to help them live their best life, with this disabling illness.
I was the last one to share my story at our impromptu round table at training day. After hearing each woman describe her journey and how it devastated her life, when it was my turn to share, I couldn’t stop the tears. Overcome, I felt quite ridiculous weeping and trying to get the words out of the story I’ve lived. Typical Donna and not my finest hour (and tears would not be helpful on Capitol Hill during our meetings with staffers and reps). Dr. Ready even remarked that Chronic Migraine patients have a disheveled and overstimulated nervous system; tears and sobbing do NOT help our condition. How many times have I mentioned that when I found myself progressing from episodic to chronic, I was noticing my nervous system seemed to be on rails all the time?
While I was embarrassed about my sob-fest, one thing Chronic Migraineurs often show an abundance of is EMPATHY; my fellow Texans were just … SO kind and understanding. And I assured them I would keep composure the following day. *Donna blows nose*
Back to our first Capitol Hill visit with Senator Ted Cruz and his staffers… Dr. Ready explained the process of becoming a headache specialist (med school, residency, and finally pain specialty or headache disorder fellowships), the specifics of S.2892 and ammendment of language. He then would turn to Casey, Katie, Kelly, Ashley and me and say, “These brave women – all struggling with migraine disorder – have traveled all the way from Texas to DC to tell their stories.” The staffer would look to us and one of us would start speaking, then another would join in. It was as if we’d known each other forever… we could build on stories, explain how they pertained to our ASK today, our personal frustrations and dead-ends with present medical care, the impact of migraine disease on our lives, careers, family. No one dominated the conversation… we simply talked. I tried to find out what the staffer’s personal experience with migraine was – so we could establish a frame of reference. And I also pointed out that we are TEXAS and should be the BEST at everything.
At one meeting, Dr. Ready caught me off-guard when he explained (a fact I already knew) that migraine disorder was particularly devastating since it almost always strikes ~ ages 18-55 (mostly women), when people are in the very prime of their life: working their careers, raising their families, living.
This statement struck my heart and my last 12 years of Chronic Migraine flooded my mind: my children only remembering me sick, no longer being able to practice as a nurse, the financial collapse my migraines have caused our family. (A deep breath in, hand to my heart, and just a few tears…)
We walked over 10,000 steps through hallowed halls of hard tile, rainy wet streets of DC, in and out of security and different buildings (Rayburn, Longworth, Russel), up and down stairs and tiny old elevators. We had five meetings with legislators and staff and talked and talked and talked some more.
And where was my Migraine during this very busy day? A low level (thanks to adrenaline)… but complete with nausea and vertigo and bad photo sensitivity. Headache on the Hill is quite an assault on the senses: loud, echoey, hundreds of people, unfamiliar environment, varying temperatures, physically and emotionally demanding … and, yes, definitely, wonderfully rewarding. I feel bonded to new friends from Texas and the rest of the country, and I would love to return next year for the 14th annual Headache on the Hill. We will follow with the contacts we made and the ASK bill in the great hopes of improving treatment for the thousands of people living with migraine and headache disorders.
How can you help?
1) Contact your senator to urge support of S.2892 and ammendment language from residency to fellowships.
2) Contact your representative to urge support of H.R.3414 and ammendment language from residency to fellowships.
3) Consider a donation to help support AHDA and our annual Headache on the Hill event. No amount is too small. Donate link: http://bit.ly/2w4YpCZ
4) Consider attending Headache on the Hill in the future!
My friends and Migraine mates for life:
Our day started at 07:45 and we finally returned to our hotel at about 18:00 hours. I was so exhausted and flaring that I could only call for room service dinner of chicken panini and hot chocolate, get ice for my head, take medicine and go to sleep!
The following day, Wednesday, I said my heartfelt goodbyes and traveled back home to Austin, my babies, and my loving husband. Thursday I wasn’t able to get out of bed for migraine and RA insane pain. Recovery will happen! But it may not happen quickly. This is the life of Chronic Migraine. I am so grateful to have been a part of this amazing experience of Headache on the Hill 2020… to have met with our country’s legislators, worked with medical professionals intent on advocating for their headache and migraine patients, and communed with so many inspirational migraine patient advocates! I never saw this MIGRAINE life coming, never anticipated the way it would mangle my dreams and shrink my life. But I’ve learned there are thousands like me; I am not alone. And there is HOPE.
#HOH2020 #ChronicMigraine #MigraineAwareness #CMA It’s happening! Today was training… tomorrow we’re ON The Hill. It’s not a competition, but if it were, everyone would want a piece of Team Texas⭐, jus sayin! We have Gunner the service dog, trained for medical emergency!🐕⚕ This is bipartisan all the way… asking for positions for more doctors to specialize treating Chronic Migraine. Our population is under served… we are… suffering and stigmatized. See ya tomorrow, Ted Cruz!
Tomorrow I leave for Headache on the Hill 2020 #HOH2020 … 08:00 departure. One layover at Kennedy. 6 hours of flight. Flying alone is always an interesting adventure (for a Normal, as well as a Chronically Fabu person)… will I be able to navigate the ghastly airports/security/cramped quarters, and so many TRIGGERS?
Flare triggers like: •personal anxiety •noise •confusing directions and fine print •fatigue, exhaustion, not enough sleep •altitude changes •odors •time changes •dehydration •hunger and skipped meals and so many many many more!
I’ll have my gear ready: •earbuds with audiobook •Cambridge mask •TSA approved protein snacks •meds (*here’s a terrible wrinkle: one of my migraine med refills has not been renewed… I’m heading out of town and into TriggerVille short one of my important tools. So so so so not cool. Hoping I can somehow get the refill in DC??) •comfie clothes and compression socks •every pair of sunglasses… from indoor to major sun. •Cefaly
As per usual, I’ll sleep like crap tonight… tomorrow I’ll practice my relaxation… I haven’t requested a wheelchair assist so I’ll need to stay on my toes… I’ll premedicate to stay on top of any flares – adrenaline will be on my side! I’m taking just a carry on and – lord have mercy – I always seem to pack too much🤦♀️
This will be an amazing experience advocating for Migraine and Headache disorders, sharing our stories, and meeting with our legislators … we will be a team of 6 from the Great State of Texas. I am so grateful for this opportunity to spread awareness and conquer stigma! Thank you #HOH #CMA #CHAMPS #AMF
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! 💜💙💜
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!!)
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.