https://rheumatoidarthritis.net/stories/honest-account/
Damn.😶 I feel her and this is beautifully written. A photograph of myself… taken from far away and not so long ago.
Back when I moved without thinking about every movement, my feet didn’t swell, my hands didn’t hurt, I woke up a little sleepy at 7, and had a cup of coffee and my energy would unfurl and I’d chase little squeaky spawn all day.
❤❤❤❤
I woke up today and it was May 15; it was the Next Day. May 14 and the longest awaited hearing had come and gone and today was the next day and the earth was still spinning. Amazing.
Recovering from yesterday, I got myself out for my EMDR appt! Yay, me!
The Zombie Machine was acting slightly weird as I started up the SH71 hill from Sweetwater. Hmm, I told Marc the dash lights were on a few days ago: the battery and little orange wrench light. Shot husband a reminder text. My love Odyssey is almost 10 years old and I’ve been sensing we may need to replace this old girl. Small things have been going wrong. And that’s very un-Odyssey-like.
EMDR appt was cathartic. I went through my feelings about yesterday’s hearing. It was emotional, to say the least. We also discussed plans for the future; I only have one more session with Shanna before she moves away.
On the way home… the Odyssey was even crazier; something majorly wrong with acceleration. I called Marc, slightly terrified the car might have a serious problem. Would I make it home? I still had a 30 minute drive. He promised he’d take the car in tomorrow or Friday and wished me luck.
Too many traffic lights. Too much stopping and starting. All the lights flashed on the dash …
and the minivan ker-chunked and spazzed into complete electrical failure. Right before the historical 360 Austin Bridge on 360S. I tried to steer into the shoulder but couldn’t make it. No power. No power steering, no power brakes, no hazards, door locks, windows, unable to shift gears. Dead. As a door nail.
I was shaking and starting to freak. Traffic and cars beeping. I tried to work my phone but I was a mess. Nice stranger lady came up beside me and offered to push me to the shoulder if I shifted into neutral. But the car wouldn’t budge the gear shift. I thanked her profusely. Finally got through to Marc. He’d come right away. Called 911; I needed a cop with flashing lights or a flare before I caused an accident.
The wonderful cop came for me! He taught me how to rig the gear shift without power!! And I coasted to the shoulder. My hero!
Waited for Marc and the officer stayed with me. I was holding it together with frazzled and frayed nerve endings. The officer and I made awkward conversation. He was so kind… so kind to help this old crone with the embarrassing beat up old crone car.
Marc arrived, apologized a thousand times, tucked me in the Fit carefully and sent me home while he stayed and arranged the tow for the van.
The stress letdown began it’s deluge… immediately, from the top of my head down. Migraine Nation commence. RA flare ignition. Ta-da. My nervous system on rails, my muscular system like thunder & lighting, plus I couldn’t calm my breathing, I was crying and my legs were jello. Good bye to the rest of my day, hello pain/meds/bed/heater/ice/meditation. I hate that stressful events can completely unravel me. Marc was a peach.
Thinking about replacing cars… I believe we may be done with minivan time 😱 Almost 20 years of carseats, little peeps to tote around town as they vomited, Costco and grocery and Target runs, and a thousand diaper changes. 🤔
I can just take the Fit to my multitude of doc appts and little errands. We could do fine with a Honda CRV for traveling with only 2-3 young adults, college runs and trips with a tiny grated towing trailer. This is monumental. The end of an Era. Maybe in a few years, the Fit can be replaced with a black Dodge Charger for moi?😁 Dreams can come true!🤷♀️
This is a great read on RA…
https://rheumatoidarthritis.net/living/the-right-things-to-say-to-someone/
Today was a big day. A day I’ve been anxiously awaiting for ~3.5 years. A day I’ve dreaded, prayed for… so many many mixed feelings and emotions.
This day started years and years ago (I’ll include the bloody deets at the end)
My attorney Adam met with us for our final hearing prep 2 weeks ago. He still made clear he felt very positive about how my case would go. Adam is helpful, succinct, confident, hopeful, supportive. He also said he knew my judge… Judge Moore. And he described him. Marc could be in the room but couldn’t speak. I was concerned about my crying.
There are tissues in the room. You will not be the first to cry and you certainly will not be the last.
[Adam assured me.]
Not only am I a cryer by nature, I am facing the very horrible reality of disability, of the loss of my identity as a nurse – a career I LOVE and am talented at. I have spent the last 4 years plus trying to come to terms with these enormous emotions, anxieties, depressing thoughts as well as my very real chronic conditions. All while trying to hold on to HOPE. I can not let it slip through my fingers… I need to hold on, keep scooping as much as I can into my cupped hands, spread it on my skin, breathe it in. I cannot lose Hope. And I know, I KNOW that whatever happens… WHATEVER happens, we WILL be okay. Yes, the debt is daunting and oppressive. But we will make it. We have each other. We will be always make it with each other. Hope is with us. Always.
So today arrived… right on time. Yesterday I walked around like a strung-out zombie, chewing on my anxieties, trying to remember to breathe. I was hot and I was cold. I was exhausted and I was jazzed. I slept well. I woke, my cup 2/3 full of adrenaline and anxiety, 1/3 full of Pathologic Lethargy. I treated my brimming panic attack and showered. Breathing, breathing. I roused the kids, I put on court makeup (waterproof mascara… check) and tried to style court hair. Fail. I really can’t do hair. I checked in with the kids as they readied for school; Nick had another AP test this morning. Half blind with panic, I kissed them good day and wished them drive safely. I tried to rest. Marc made us breakfast. I went through my hearing notes – my lifeline as I cannot trust my aphasia and word recall and didn’t want to act like a dope at hearing.
Marc and I drove into town. Making small talk. Marc continued to be encouraging and sweet. I reached out on Facebook for spare prayers and was overwhelmed with good wishes.
Big day ahead, one I’ve been waiting years for. Brimming with anxiety and every other emotion. If you have a spare prayer, I’d be grateful always.❤
My post this morning generated 50 comments of support and 79 reactions. There are no words to describe how this outpouring of support and love affects me; how can I be so blessed?
I responded:
I openly admit there have been dark times in my life, where I was so overcome with emotional pain, that I could scroll through my contacts feeling completely alone. My mind told me: “skip that friend, they are too busy… Skip that friend, you can’t call them, they already have too much on their plate… Skip that friend, they won’t care… ” It is an isolation and aloneness of crippling depression. And your own mind can be a powerful liar.
And yet… like today, I can post asking for spare prayers and so many answer. I cannot put to words how overwhelming this is for me. I cannot imagine anyone more blessed and I honestly cannot thank you enough for your kindness and support. Thank you for saving me. Thank you.❤
I will keep breathing, I repeated to myself, I will keep walking, moving forward, and breathing. I have so much support and I can make it through.
[Court Day Hair & Makeup] Court clothes: long black short sleeve dress, comfortable black shoes, Axon Optics.
We parked. Walked to the court building…
Walked in through security, nervously fumbled for my ID. Elevator to floor 3, room 319. Wait for Adam. He arrived and went over last minute notes. I held my hands in my lap, my head down, I breathed. Anxiety in some control, continually on the verge of tears. Adrenaline in full control, and while that is the case, Migraine will stay in check. Adrenaline bathes my nervous system. It’s one of the most amazing and bizarre Donna Migraine Factoids.
We were called into the hearing room. It was everything Adam described. Judge Moore was even wearing a bowtie, as Adam predicted. After introductions and some notes, I talked almost 45 min. I shifted a lot. I rubbed my hands together. I self-soothed. I stayed in the present. I took notes when the judge talked or I needed to correct him. Adam talked and asked me pointed questions. He is really a lawyer lawyer. Again, I’m impressed. He knows his shit. Then the job analysis person telecommuted her part. We were done and free to go. I rose on jello legs, collected my folder and papers, took a deep cleansing breath and left with Marc and Adam.
Adam said he really felt it went well and he wouldn’t say that if he didn’t believe it 100%.
We should hear via mail in a few weeks. My claim goes back to 2013. I filed originally in 2015. And I may have a ruling before the end of 2019.
This has been a very long and depressing road. I will remain one of the Hopeful.
Filing for disability is humiliating. It is devastating. And it is completely necessary and appropriate. Worst conundrum ever.
Within minutes I could feel the release of adrenaline… letdown migraine commence.
My Ridiculous History of SSDI:
In December 2012, I stopped practicing as a registered nurse at the pediatrician’s office; a job I loved, patients I loved. We were preparing for our move to Austin, where I planned to take a year off from work, transfer my license and work on improving my health.
Things didn’t go as planned. Soon after arriving in Texas, I was diagnosed with Rheumatoid. It answered so many questions about the newer symptoms I’d be experiencing. A year later, my worsening sciatica was diagnosed as sacroiliac joint dysfunction. Cluster fuck was commencing; my head was migraining, and my emotions were treading as fast as possible, and my feelings were drowning, I was drowning over and over again.
I proudly transferred my RN license. I investigated some jobs that sparked my serious interests but there was a dark cloud over it all. How would I conquer my Pathologic Lethargy? My teen kids seemed to need me more, not less. Would my immunosuppression cause problems in a clinical setting? Would I be able to function as a nurse? Tracking my migraines revealed they were at 15-18 episodes a month.
My hero friend with RA first posed the idea of disability in 2014. She explained I could still work a limited amount, and I could even get off disability should I go into remission.
As our family sunk deeper into debt from supporting 6 on one salary, Marc and I knew we would have to consider this option. I had after all, paid into disability my whole working career. This is an insurance for the possibility of becoming sick.
I worked up the courage to start the process in spring 2015, submitting paperwork to SS. I asked advice from my doctors and migraine friends. My expected denial arrived 4-5 months later in the mail.
Next step attorney. Marc called our legal insurance company and got a name: Robert something.
We first saw Robert in fall 2015. I arrived at the office building with my briefcase in hand and took the the elevator to floor 2. Marc wasn’t there yet. I walked into Robert’s office and it told me everything I needed to know. I should have listened to my gut.
Robert’s office was a fucking MESS: papers and more papers everywhere. He had a desk and 2 chairs facing for clients. That was the extent of visible furniture. I introduced myself and sat in one of the chairs. Marc came in a few seconds later and took his chair.
We exchanged greetings with Robert. He was awkward, a bit weird, “quirky,” I’d call him.
We presented my paperwork. And he reviewed it. I was ridiculously distracted by his shambles office space. He reviewed my paperwork on top of other piles of papers. Papers on the floor, all over the desk, piled near the walls… furniture of papers. He seemed gruff, a bit disinterested. But he admitted he thought I had a good case. What did Marc and I know about lawyers? Not one thing.
Robert told me to collect new records from all my doctors and get them to him and he would file the appeal and represent me. Over the next few days, I did just that. All the offices were very kind when I explained what I needed. And Robert filed within days of the deadline.
I recieved the second denial via mail about 6 months later. Marc contacted Robert. Which was incredibly difficult: his voice mailbox was always full, he never answered texts, and emails were answered slowly. When he finally connected, Robert explained he would file the next appeal for a hearing.
But the next 18 months Robert ran us around, bull shitted us, avoided us. It was infuriating. I contacted SS and they told me my case had never been appealed for a hearing (Robert had lied about filing) and my case was dormant. I started to send Robert ultimatum emails:
By not responding to our emails, we are assuming you do not want to represent my case.
I will interpret your lack of response as you relinquishing representation.
SS has informed me that you did NOT file as you claimed and my case has gone dormant.
No response. We were lost. How could we find attorney when I was too embarassed and ashamed to discuss my disabilities? But a ray of hope shown. I was able to ask a friend for an anonymous referral from her lawyer friend. And that’s how Marc found Adam.
Adam was a polar opposite of Robert. Charismatic, efficient, confident and comely. He has an important lawyer feel. Lol.
He reviewed my case with any paperwork we could get from Robert (which wasn’t a lot… he’d lost most of it). Adam agreed to take my case almost immediately. He said we’d have to work quickly to somehow avoid the fact my case was dormant; he could argue with SS that I had incompetent legal representation. Adam took care or this. He also found Robert (now in San Antonio), walked into his office and had him sign off his legal rights to my case.
Adam is impressive.
When we met in October 2017, he said he felt very favorable about my case. And his staff would file the appeal.
Another letter of denial arrived ~6 months later. His office called me right away. I asked what I should do as the letter appeared to need a response. Veronica told me she would fill it all out and send it in; I didn’t have to do anything. Wow.
The Letter my provider submitted:
Regards,
M. B., APRN
Nurse Practitioner at Austin Family Mental Health
Letter I gave to my Providers:
Disability status April 15, 2019
My disability hearing is fast approaching and I’m anxious to be as prepared as possible. I know my legal representative has been gathering my medical information and it’s my understanding more documentation is better.
This has been a humbling experience and journey, starting with Chronic Migraine diagnosis in 2007/8. Over the next few years, I would take note of a tremendous decline in my physical and mental abilities. Finally in late 2012, I worked my last day as an RN. I hoped taking some time off would help me recover my health, but instead I recieved confirmation in 2013 that I was indeed struggling with more than just CM, and was diagnosed with Rheumatoid Disease.
I know we’ve discussed my acceptance and process of acceptance of my changed health status at appointments for the last couple years. It has been a very difficult road. Where once I had “normal” energy and “normal” comfort, now I face an incredibly limited amount of functionality.
Treatment time alone for my conditions of Chronic Migraine, Rheumatoid Arthritis, sacroiliac joint dysfunction and chronic lower back pain, depression & anxiety is an enormous project with at least 1-5 doctor/treatment appointments a week.
Medication, mindfulness, avoidance of flare triggers (rest, eating well, lowering responsibilities) help manage my illnesses a little. But most days, I am unable to get out of bed until 11am or later due to pain and fatigue lethargy. This is very different from when I used to get up at 4 am, exercise cardio and strength and report for an 8-12 hour a day clinical shift.
Now, my conditions keep me very close to home and my bed. I’ve had to hire help with cleaning our home; I can do very little housework – mostly some light laundry and preparing a dinner meal for our family. I also need to grocery shop and make general purchases online as going out for these responsibilities is too difficult or not possible.
It’s taken some time to realize my NEED to rest is not the same thing as being “lazy.” It is critical I rest to recover from flares and/or be able to accomplish small tasks: getting to medical appointment, helping my kids with a project or preparing a meal.
I’m never without pain or symptoms: Chronic Migraine symptoms are intense and overwhelming head pain, confusion, nausea, vertigo, aphasia, horrible light sensitivity, noise sensitivity, lethargy, and general clumsiness. Rheumatoid Disease symptoms are pain and limiting capabilities in hands and feet, severe muscle aches, exhaustion, brain fog, joint/extremity swelling and stiffness. My chronic back symptoms are pain with basic movement and activity, extreme difficulty with activities of daily living, difficulty with any sitting, walking or movement.
For all these issues, I need daily medication, activity restrictions, rest and bedrest, heat and ice therapy.
As I’ve kept careful notes with my flares, I can safely say I’m able to put together possibly 1-5 hours a week of “functional activity,” as opposed to a normal 95-98 hours a week of functional activity for someone my age without these severe chronic conditions. The concept of being able to work outside the home for even 3 hours a day is not an achievable goal, as my flares are so incredibly frequent and unpredictable.
Even with a decent bedtime, I struggle to get out of bed before noon each day. Small activities like showering or dressing require I rest afterwards.
This is not how I envisioned my life at 46. I loved working as a nurse and I miss it terribly. Now, I work very hard at improving my health, following treatment plans and doctor’s orders, researching new treatments that may improve my health status, and remaining hopeful that I may recover or get my disorders into remission.
If I can answer any questions, please let me know. And I would be most grateful for any documentation or note/form you could provide my legal team before my hearing date of May 15.
Thank you for your continued support and care,
Donna
The storms are rolling. Encased in ice. All therapies and medicines are failing. This is an #8; the storms are raging in my head.
#ChronicMigraine
djk #MyBeautifulMigraine
#MigraineAwareness #speakyourmigraine #ChronicIllness #invisibleillness
The next day:
I’m awake this morning and feeling better. I think a shower and actual clothing will be in the agenda.
What’s so bizarre is I barely remember yesterday… I was responding to messages, saw my kids and husband as they came and went, even folded some laundry, did some biz and watched tv… but it’s like it all happened to someone else. I barely have memory of it… truly a day just thrown away.
Shocking. These experiences SHOCK me. Still. Even after all these years (over a decade of chronic migraine)… it is shocking how sick I can get …and still live.
It tries to kill me, but it has never succeeded.
Pain ends, Love is eternal.
I get it. We are all human. When I was practicing as an RN, I’d mess up and say occasional dumb things. It happens. But today’s comment was incredible: shocking, hurtful and telling. I’ve been processing it for 2 days.
My neuro has a really great reputation in Austin. And I’ve been able to get innovative and good care for chronic migraine. Mostly the PA Mariah is my provider. She is actually a chronic migraineur herself, so she has an invaluable perspective. I’ve been her patient for 5 years, seeing her 6-12 x a year. And we’ve talked a lot. She is on botox treatment and has been through many of the preventative medications; she hasn’t mentioned if she’s tried CGRP yet but when I told her the Emgality was causing some issues with my hormones/thyroid numbers (my estrogen is 0… meaning my body is no longer absorbing the estrogen patch, where it used to. And my thyroid numbers are slightly high, meaning my body isn’t absorbing the levothyroxine, where it used to), she told me it simply wasn’t possible the Emgality was the cause, since it had no mechanism of action to do that. Whatever Mariah. I started Emgality and my body went whack hormonally… there were no other changes I’d made. Take it or leave it. I know it was the drug. And Emgality did not help my migraines.
Anyway, Mariah has changed my diagnosis a bit, so I’m getting more botox (the ONE helpful preventative medication for me!). And that’s swell. I get 40 injections in my neck, shoulders, temples, occipital area, forehead and jaw. Omg the jaw. So, so helpful. 2 days later and I’m beginning to feel a bit of relief. We’ve been having horrendous thunderstorms for 3 days too. My barometric fluctuation trigger is triggering away.
Anyway, all went as usual with the botox jabs and Mariah and I chatted while I sat there still in my chair and she worked. She looked lovely this day: smiling in her scrubs, her cute, funky glasses on, her long auburn beach wave curl locks – really lovely. Since I was migraining and having a particularly difficult time with aphasia, I became exasperated at one point, “I just can’t get my words out!” And then Donna nervous laugh. “That’s ok,” Mariah said, “you can just relax; I understand.” That was nice of her.
After the injections, I asked her a few questions about botox that a migraineur on the boards had mentioned.
That’s when Mariah brought up her new treatment. Apparently, she recently had an 18 day migraine that just would NOT break. “You name it, I tried it,” she said, referring to every medication the practice uses to break status migrainosus. In the back of my mind I could hear Mariah’s past lectures to me: “If it lasts more than 3 days, it simply is NOT a migraine. That isn’t possible. At that point, it’s got to be rebound or medication overuse.”
Hmmm. Mariah experienced an 18 day migraine? I thought those were not possible? I kept my mouth shut and continued to listen to her, with great interest. I could tell there would be some valuable information in this story.
She said she tried Craniosacral Therapy then. The first few minutes the practitioner had her hands on her, Mariah thought: This is hokey. “But then, Donna,” Mariah said excitedly, “all of the sudden – the migraine just BROKE!” And Mariah has been continuing craniosacral therapy since, and has found it very helpful (she also discussed with detail how the practitioner could see the misalignment of Mariah’s face before therapy).
I was very happy for Mariah. I can understand the gigantic drain of an 18 day migraine and working (see Donna’s life 2009-2012). I said soothing and encouraging things to Mariah (although I don’t believe she has children to care for as well). I also started to tell her about how I had done craniosacral therapy a few years ago (didn’t help me but was relaxing). But she had to cut me off.
Mariah was off to another task and starting out the door (I understand this… they are SO busy!). She closed her story with: “It’s been really, really helpful and you know me, I believe medicines are what helps migraines. I mean, if a patient had come to me and told me craniosacral therapy had really worked so well for them; broken a long migraine, I would have been really skeptical,” Mariah said and she scrunched up her face, feigning disdain and disbelief for this imaginary patient and conversation. “I would have said, ‘Okay, whatever!’ And not really believed it. But I experienced it! It was amazing!
Anyway, bye, have a good day and I’ll see ya soon!” And Mariah left the room and shut the exam room door.
I sat there slack jawed. Had Mariah not heard herself? How could she say that? Does she even hear the words and message she just gave me? My mind was zinging – not only from migraine, but just sheer horrified astonishment. I didn’t move. Just sat there stupid in my chair with my stupid gown on. My brain alerting me something was WRONG; faintly imagining the far off sound of a zany carousel music score… Circus Town had just happened in my neuro office at my botox appointment. My migraine caregiver just blurted out unapologetically that if a patient came to her with information about a therapy that helped, she wouldn’t give it credence because it wasn’t her taste of “medical.”
What the hell?
I started to take off my gown and dress but I was really shaken – not just from this humdinger migraine buzzing in my brain and veins, making me weak, confused, lethargic – but also this brush with my medical care harsh reality.
I was so out of it I almost threw the gown into the garbage, rather than the hamper.
This place… this office where their job is to provide the best medical care for my neurologic disorder… this place isn’t “safe.” They don’t trust what I say. They don’t believe me. I can talk to them about my experiences and symptoms and ailments, but they doubt me. They belittle me. They don’t really connect or even try to connect with me… and I come to them seeking help and care. They devalue my words and are skeptical about my situation.
Now, to be clear, I’ve felt this in the past at my neuro’s office. I have. Like I mentioned, Mariah has told me that if I’m experiencing a migraine more than 3 days, I’m basically wrong. It’s not a migraine. She’s imparted this information with great authority, leaving no room for dissent or conversation. But she’s also had moments of caring. “This is a bad phase, Donna,” she’s said, while I sat vulnerable in front of her, “just a bad phase… it won’t be the rest of your life. We’ll get through it.”
And that was kind. Many times I’ve cried my eyes out with Mariah, over the disintegration of my functionality, or a couple times when she trialed me on a medication for migraine prevention that resulted in an eruption of full blown depression or fits of uncontrollable rage. (Those were some fun times) Mariah is a good person. She’s a capable practitioner. She’s pretty darn smart.
But… she just kind of admitted… she doesn’t believe me.
mybeautifulmigraine 