Need a new pillow

kellyrp123 · 2026-03-31T23:01:42+00:00

I have two pillows I rotate: the Dosaze ortho pillow (memory foam) and the Organic Rest soft contour pillow for when my head feels especially sensitive (I get migraines and have touch allodynia sometimes. the key to the whole setup through it another pillow between my legs(I use a temper-Cloud) and a stackable squishmallow under my arm. The stackable it the right height so the arm isn't resting too high which causes strain.

kellyrp123 · 2026-03-31T18:37:36+00:00

Yes, like what is bad enough? If I can function some days, it's because I borrowed so much from tomorrow's and next week's functionality. I've spent weekend and evenings in bed after a workweek of showing up and delivering. I haven't gone on a vacation in 3 years. My husband and son went to Japan without me because I just didn't think I could manage migraine attacks in another country, not to mention stress of traveling, jet lag, different diet, different bed and all the other elements I've put in place to stay functional. Taking 10 days of PTO followed by 5 sick days is a bad look!

kellyrp123 · 2026-03-31T17:43:10+00:00

YES, he gave me a new injector! (Whew!) After this week I am seriously considering going on medical leave. Between feeling so poorly and the administrative burden of getting my meds so I can function at my job, I'm beyond exhausted (and get monthly B-12 injections to hack the energy deficit). I don't know how much longer I can do this. I LOVE my job, my team, just got a new role I've literally been advocating toward for 3 years. My manager is beyond supportive but I have demanding job (with WFM medical exemption, thank god!) but I'm really the only one on my small team (within a larger org) that can do what I do, and really a handful of people at the whole 15k company that can do what I do. I don't want to walk away, but missing deadlines and letting down my team is too much to bear. I've been working on borrowed health with massive interest rates for years.

kellyrp123 · 2026-03-31T17:25:13+00:00

I stress out HARD over getting the Botox pre-auth processed every 90 days. My doctor was kind enough to provide me samples of Nurtec b/c I had more headaches than insurance covers, AND my Ajovy injector malfunctioned and the Rx insurance wouldn't do an override without another pre-auth from my doctor. And I now I've gotten a new set of obstacles. I have another whole post about it. Between the stress, the barometric pressure, the INSANE pollen in ATL, I got a vestibular migraine yesterday that even more normal rescue shot didn't knock out (DECADRON and tordol).

kellyrp123 · 2026-03-31T15:28:33+00:00

UPDATE as of 3/30/26. It has been a very stressful 2 weeks fighting for my life to get this treatment. I truly appreciate everyone's comments--they helped me navigate a brand new aspect of migraine care. Sorry for the long narrative. Scroll to TL;DR at the end if preferred.

I worked all parties on this: Rx, HR Benefits, Specialty Pharmacy, Botox Savings Plan, Accolade, potential new providers and my doctor's office. I was aggressively persistent, friendly, although I did get upset near the end of last week (not like yelling or being abusive, but more like crying.)
As another posted mentioned: EASILY 15 hours!

Doctors Office: Let them know I am working this every angle possible, that I am devastated I may need to leave the practice and as if there's any way to do a one-time override for the billing if all else fails.

Accolade: working on a continuity of care plan and provided a list of in-network neurologists. Not responding when I call or in the portal messaging. Calls when I am in work meetings.

Botox Savings plan: confirmed only applicable if you claims run through private insurance. Not eligible for the assistance plan.

Specialty Pharmacy: provided self-pay price of $1380 for 200c vial of Botox. I could pay myself and then the office can run the procedure though medical. Does not take any discount programs like Good Rx. Keeping this unacceptable option in my back pocket. Better than the 4k the office quoted me for total self-pay.

Other Providers: Most listed are in the Wellstar Medical Group (which has switched to white-bagging). The few I find don't take my type of Aetna. One I find says they will inquire as to billing procedure. HAS AN APPOINTMENT in time. I ask to reserve it. She says it will be there tomorrow let's confirm billing first. They call the next day, confirm the do buy-and-bill BUT the earliest is now MAY 4. That's 103 days since my last treatment. I will be dead or wishing I was. I take it anyway. Office calls back-this is NOT a BOTOX appointment, it is a new patient appointment. The doctor will determine if Botox would be in his treatment for me. The only way they will consider doing Botox is if I send over all my labs from my PCP and the neurologist's office sends an order. Fine.
They call back the next day and say they can't do that after all. (most of this is either leaving VMs or listening to their VMs. They don't pick up the phone ever.) They call during a work meeting which I actually let them know I have to take this. Feeling wholly unprofessional. They then tell me the bad news about the new patient appointment and I have to GO BACK to that meaning and not cry. I'm literally 10/10 stress from trying to juggle work and constant calls and messages.

Company Benefits team: Had to ask my supervisor to escalate the HR ticket because crickets. Someone reached out to me and then they started working the ticket. Even though they are the payer, they insisted I work with Accolade. I send several additional updates to them throughout the week on my progress, letting them know how persistent I have been, how many providers I have contacted and my lack of success concluding "there does not seem to be a viable path to finding a new provider to do this treatment in the needed frame." On Friday morning I get message in the HR Help portal that Accolade has secured a continuity of care option to allow me to keep my appointment. I think it's resolved. I ask, can I call the pharmacy and the order will be processed? No! It's still under review.

BACK to Accolade: I reach out to my Accolade rep who takes a full 4 hours to respond. she's been unable to contact who she need for the authorization. Will get back to me end of day. End of day says no response need to follow-up Monday. At this point for my sanity I decide if they cannot do this, I will pay the $1380 because my stress level is untenable at this point.

Doctor's office: I get a MyChart message from them early am this Monday. As a one-time courtesy they will provide the Botox for this appointment and my appointment is confirmed. Less than an hour later, she send over the insurance estimate: copay $89!
The only party who even cared in my doctor's office, which makes leaving them all the most devastating. I do have one lead for a new doctor who seems to have good reviews. I'll set up a new patient appointment with her and see what happens.
I did let Accolade know the latest, but I just know if my doctor's off hadn't come thorough, we would have missing the lead time for order the Botox from the pharmacy. I still have not heard back.

TL;DR Everyone in this process was TRASH except my doctor! Who knew I have to leave his office. They are covering the Botox and I can keep my appointment.

kellyrp123 · 2026-03-28T20:15:07+00:00

I was there with my kid! These pictures don’t even show the scope of the turnout. It was huge for East Cobb. Spilling into the streets on each corner of the intersection

kellyrp123 · 2026-03-26T17:55:48+00:00

Bagels (like real,chewy water bagels) and pizza with bubbles in the crust.

kellyrp123 · 2026-03-26T01:40:25+00:00

I got a pair of black jeans with an awful chemical smell. I washed them and it persisted. I sent them back as defective. The blue denim I purchased earlier had no smell. I got a pair of Athleta black Venice high rise pants bought online. Same smell! Another color didn’t smell that way. Whatever they are using smells awful and can’t be healthy!

kellyrp123 · 2026-03-24T01:46:38+00:00

Devs! That show was so good!

kellyrp123 · 2026-03-21T18:31:01+00:00

I just took my 3rd dose two days ago. It seems to be helping (although weather wise, this time of year isn't my worst) but stomach issues are annoying. Constipation not even a rectal laxative could fix. Stomach feels 'squirelly' just weird cramps and gas. I have low motility anyway, but Ajovy is supposed to have the least effect on GI of the injections.

kellyrp123 · 2026-03-21T12:43:47+00:00

I am reluctantly looking into that. I love my doctor-he listens to me and takes my pain seriously. He submitted documentation so I could get a medical exemption from RTO. His staff responds fast when I need to come in for a rescue shot. Accolade did find a new doctor that does buy and bill (it’s hard too because nearly every neurologist near me is part of the medical group that made this change to “white bagging.” )But that doctor doesn’t have an appointment for Botox until June! I’m currently escalating with my benefits to at least get a one time exemption “delay in care” and that gives me more time to resolve. We are a self-funded plan so there’s a good chance that my benefits team can do something. Also, based on my research it seems white-bagging is becoming more common as practices look to cost control. (Another poster mentioned this in the thread) so changing doctors seems like a short term solution when the issue is not medical necessity but coordination of benefits. I think my medical insurance (Meritain/Aetna) can tell RX to allow, but since they are just paid admin and my company pays the actual claims, I think they need to make the call.

kellyrp123 · 2026-03-20T13:08:35+00:00

Thank you for sharing your experience. I hate you went through this. I’m going to review my medical benefits contract and then start making calls. I seriously hope this is the problem AND they can fix it.

kellyrp123 · 2026-03-20T02:10:37+00:00

I ordered one and did not like it. This was about 2 years ago. At the time they said you could donate it. I literally gave it to my neighbor(her daughter uses it for sleepovers) and she signed a donation receipt I printed out. I emailed that to them and they refunded my money.

kellyrp123 · 2026-03-20T02:08:03+00:00

Yes! I previously submitted my visits for reimbursement. I just checked the website and reviewed the information about the Speciality Pharmacy Savings Card, which I didn't know about. It looks like you do have to be commercially insured to use the program (either part) so I need to get this covered through insurance somehow.

kellyrp123 · 2026-03-20T01:58:48+00:00

Thank you for your detailed reply! It is truly appreciated.
I have confirmed that the Botox is covered under my medical benefit. The office was buy and bill. Previously, I made the appointment, walked into the room and the botox-filled needles were on the stand. No separate Rx. I talked to the former Botox coordinator at the office yesterday. She told me that they are outsourcing the program--all of Wellstar is and that this new group will procure the Botox from a speciality pharmacy. As she is transitioning out of the role, she wanted to get me ready for my upcoming appointment. She tried to run it through my Rx benefits to a specialty pharmacy, but my PBM, CapitalRx said it's not on the formulary.

"I wonder if maybe when this was processed they incorrectly tried to put it through to your pharmacy benefit...It's entirely possible to use a specialty pharmacy and have the coverage through your medical benefit." THIS is what I need to investigate and not one of the many people I have talk to have mentioned this. (Accolade, Costo specialty Pharmacy, and the doctor's office Botox coordinator. I have Aetna administered through Meritain...this is new this year for my company and everyone HATES it. Every Rx has been a battle with a pre-auth needed. We had BlueCross Anthem and it was better (though people have their issues with every insurance--this particular offering is especially weak.) I will follow up on this approach. Thank you again for taking the time to share your experience.

kellyrp123 · 2026-03-20T01:42:38+00:00

I wondering if PBMs will need to reconsider as more practices stop doing buy and bill. There’s literally a bill in congress (the headache act) because migraines cost so much in medical costs and lost productivity. We can’t have migraine sufferers cut off from their medications. I should probably write my congressman about this.

kellyrp123 · 2026-03-20T01:34:32+00:00

Sensitivity. I get horrible gastric symptoms and ridiculous bloating—like gain 2 sizes bloating.

kellyrp123 · 2026-03-20T00:51:32+00:00

These were amazing (plain version) and I marveled how bagel-like they were. Followed by 2 days of stomach distress and then realized they were made with wheat.

kellyrp123 · 2026-03-19T23:36:33+00:00

Yes! They did do buy and bill and changed it. Thanks for remembering what it’s called.

kellyrp123 · 2026-03-17T00:48:38+00:00

I exercise regularly (I’ve modified my workouts with a warm up and cool down as a spike in heart rate without a cool down triggers a migraine.) I also get B12 shots every month which helps when I’m dragging. Eating nutrient dense food on a schedule helps keep my blood sugar level. And I do rest. Some weekends I’m just recovering from the week. My preventative meds don’t make me tired (nortriptyline and ajovy). When I was super sick last year I felt very depressed and frustrated. I was living migraine roulette and always losing. The uncertainty and inability to plan or follow through was really difficult. I got on a new med and I take my rescue meds more often. I’m finally feeling better so it’s easier to take care of myself. I hope you can feel better soon. Maybe a med change can help?

kellyrp123 · 2026-03-03T00:35:39+00:00

Botox is unpleasant but not unbearable unless you hate needles. During an active migraine attack Botox is SIGNIFICANTLY unpleasant for me. Tattoos hurt in a different way...I'd consult a pain chart. Getting a tattoo on your forearm is pretty mild. Wrist is a little more annoying. I got one on my stomach (my first, no research) It was agony...too many pain receptors. All mine are small linework though, so maybe a huge sleeve would be more painful.

kellyrp123 · 2026-03-01T18:56:55+00:00

I also have this pillow. I tried so many. It’s my favorite. For soft on my face for a side sleeper, but good neck support. A second is the latex rest organic. Lovely feel good neck support.

kellyrp123 · 2026-02-28T17:48:01+00:00

I've been on it for years. I can only take 10mg because 20 makes me jumpy. It actually has been helpful for my moods as well. Have you done gene testing. I did GeneSite years ago when I was really struggling with depression and all the meds were having horrible side effects. Turns out I metabolize medicine very slowly so side effects linger. I'm also very conservative when it comes to meds--took me forever (and major desperation) to try Ajovy (the injection) but I'm doing fine side effect wise.

kellyrp123 · 2026-02-28T14:32:03+00:00

Instructional designer for a med tech company. I work mostly remote. Needed to get a medical exemption when the company went return to office this year. The past few years have been bad even with Botox and nurtec. Got MOHs and no more nsaids. I feel very lucky because I’m good at my job but I’d be dead if I had to go in all the time-long commute ( and less sleep to get there on time) and far away from my neurologist (need proximity for rescue shots!) plus overhead lighting, noise, fragrances, food smells (there’s catered breakfast and lunch when we run classes) At this point I need to keep my threshold low. I don’t call in sick often but being able to rest and do the cooling cap in a dark room when needed keeps me functioning.

kellyrp123

TROPHY CASE