I didnt know it was it was a thing... but l get it!! Its frustrating having to explain over and over and over again! Oh yeah, and over again!
Let me tell you something tho! Always Fight for your MS! Be Your Own Advocate! Dont let medical burnout stop you!
You Got This! 🤗💕🌠
Fight for your health! It's hard sometimes. I've been going through much lately. I have four doctor's appointments next week! The one Monday is with a therapist to help with my anxiety over my upcoming surgery. The others are Pre-Op appointments. Ugh!
But the forms!!!! I have a radiation oncology consult coming up. They are part of the health care system in my area. They have Epic and access to all of my MyChart information. Still, forms. So I filled them out using my colored pencils changing colors to show my increasing frustration with the ridiculous duplication of information.
Now with four autoimmune disorders I try to deal with just one at a time. It doesn't usually work because there is so much crossover.
Sometimes it just so much.
Been there, done that, got the t-shirt 😡
This was me so many years ago. I'll always resent the fact that the doctors wouldn't listen to me, resulting in a very late diagnosis. But I also accept that much of it was my own fault. Back in the days before computers, fax machines, and automated everythings, it was such a lengthy process to schedule, get insurance authorizations, approval to miss work, and on and on. It wasn't unusual to spend a year on one doctor's appointment and a single test, so every few years I'd give up until a new symptom came along.
Learn from my mistakes. Just keep going and fighting for a diagnosis no matter how long it takes or how frustrated you get!
Here’s another view… while filing out forms at the dermatologist, the receptionist stated her aunt had MS. She also said she’s been having some weird Neuro symptoms over the last couple years. She hadn’t seen a Neuro, as they were minor. I asked why. She said if she had it she didn’t want to know. I almost jumped over counter and strangled her! Well, ten minutes later, I had finished my response on why she has to go NOW! She said she would and I hope she does. It took me a why to calm down… after all, the Spokane MS Center was RIGHT ACROSS THE STREET!
Duuude; I mean Guuurrrl. LOL Boy can I relate to your post.
After injecting Avonex for twenty five years; September 1997 until March 2022, with needle fatigue, I switched to Aubagio in April 2022 too.
Although I started tx so early (still THREE YEARS AFTER my initial DX in May 1994), I had two breakout exacerbations during very stressful times (Optic Neuritis in Jan 2004 and left-side numbness in 2008) I feel Avonex substantially slowed my progrssion. Yet, my MRI changes from 1994 until 1997 were SUBSTANTIAL with many more lesions and BLACK HOLES.
I wonder how your transition from Copaxone to Ocrevus is going? I know that Ocrevus is the strongest medicine for folks with MS, regardless of their age or MS status. Tysabri has some good points too, but. . .?
I keep you in my thoughts and prayers too J! Go Steelers! 😇🙏😹❤️🤞
I injected rebif for close to 20 years. It was such a relief to switch to an oral medication. I was on Aubagio for a couple years, had a relapse, and then went on Ocrevus. I’ve been on rebif now since 2019 and highly recommend it. I’ve had no new activity on MRIs.
I do think part of this medical burnout is also remembering when we need to take all of our medications, going to doctors appointments and having blood work and other tests (and paying for it all).
YES YOU HAVE SAID IT ALL ...WE DO HAVE TO STAND UP AND SAY WE WANT TO LIVE ...FIGHT HARD TO GET THEM TO LISTEN TO YOU ...STAY STRONG EVEN THRU ALL OF THE BS THEY CAN HAND OUT ...LOVE AND HAPPINESS TO LIVE A WONDERFUL LIVE LIVING WITH MS ...IT CAN'T STOP YOU IF YOU STAY STRONG AND FIGHT FOR YOUR LIFE TO LIVE IT FILLED WITH FUN ,GIGGLES AND SO MUCH LOVE AND HAPPINESS...
❤️
Of course there's burnout! It's unavoidable in circumstances when every doctor and every patient are always strangers except in rare instances. The PCP I see, sees me twice a year for about 15-20 minutes each visit. Though I've seen her now for 7 years, we wouldn't recognize one another in another setting, or maybe not even in the context of her practice without the appointment and the chart folder in the rack outside the door.
Doctors must feel this burnout too. From my perspective, they don't seem to have much freedom in a large clinic setting. They are well trained, highly educated but very similar to assembly line workers...and if we are to believe the tech wizards, they too can be replaced by robots and AI.
Oh yes! I’ve canceled and am no longer scheduling unnecessary appointments from here on out due to this. Who deems necessary vs unnecessary? I do!
Even after you stand up & still don't get the answers you need you can try another doctor. I was seeing an MS specialist when I was diagnosed. I liked him at first. But I had started to research MS & I questioned him a couple of times just for clarification & he waa mad. He told me I didn't have the qualifications to even ask that questiin. So I left & found the best Neuro that anyone could have. She !istens, researches, tests & will change meds if needed. I've had her for 15 years. I'm very blessed to have found her.
It’s challenging to manage appointments, referrals, follow ups, prescriptions, transportation, paperwork, billing, etc., etc..
It is more than a full time job for a fatigued unwell woman who is on disability from her full time job. 25 years of it, I am exhausted.
I am loved. I am valued. I have family and friends who care about me. I think positive. I try new things.
I am also submerged in a pool of feelings and emotions I can’t seem to dog paddle through at times.
I have found my people on this site. Too bad it’s all just encouraging words from people going through the same difficulties. What if we were a group that could actually meet in person? Would you show up? That would be an event I’d consider leaving the house for. It takes such an effort and a lot of planning to do something and then I’m usually out of business for several days following.
Life would be easier for the people that love me if I wasn’t here. I am a burden whether you want to believe it or not, it’s true.
I am educated, intelligent, informed and amusing. At the same time I am in constant pain (people always forget that), fatigued, frustrated by the lights and sounds smothering me, unable to interact with others. Sit me by the wall, near the bathroom until whoever’s turn it is to take care of me retrieves me. I’ve had 15 addresses since my husband of 22yrs left me because ms was too hard for him.
Burnout in all fronts.
Medical marijuana
