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They called this morning to say my free infusion meds weren't there yet for my infusion. I need to reschedule. This will mean I have to cancel or hopefully reschedule my very needed vacation.

April 1, 2025
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Answer Summary

Members passionately responded to the question of feeling exhausted by living life around chronic illness and treatments, with many sharing... Read more

Members passionately responded to the question of feeling exhausted by living life around chronic illness and treatments, with many sharing the emotional and physical toll of scheduling everything, including vacations, around medications, infusions, and flares. A recurring theme was the frustration of unhelpful responses from medical professionals, financial strain from copays and prescriptions, and the deep fatigue that affects not just the body but also identity and mental health, with several members openly sharing their need for therapy and emotional support. Despite the hardships, the community rallied around each other with encouragement, humor, and heartfelt solidarity, celebrating small wins like meds arriving in time and cheering members through rehab stays and difficult recoveries.

A myRAteam Member

OMG! Good news, the Renflexis got there. I can still go on vacation! 🙏🤞😊
The stress of all of this. I'm sorry Harvey about feeling so isolated! Do you have a hobby? My art has helped me so much. I'm so glad your able to drive. I can drive but not on bad days.
Thank you all for replying! ❤️

April 1, 2025
A myRAteam Member

Oh yeah, tired of the RA crap piled on with comorbidity crap overladen with fatigue crap superimposed with people saying I'm lazy crap interspersed with my feelings of inadequacy crap of not having a clean house or having the oomph to do much of anything anymore crap.

It's exceptionally irritating because it's a complete 180° of how I used to be.
I just realized this...my illnesses have also taken over my personality.
Sigh

To have a medical "professional" say “well maybe one needs to accept the reality” is unacceptable and shows a heckuva lot of lacking in compassion! I had a doctor say the same thing to me just a couple of weeks ago when I had another not good diagnosis and commented on how I never ever get any good news from any doctor.

I have perfected the art of glaring and speaking back. My response to nastiness from medical "professionals": "Well, perhaps if you did a better job, started to actually care about your patients, and stopped charging hundreds of dollars for the handful of minutes you spend with them during each visit, we wouldn't be in this situation!" The doctor said he wasn't in control of what's charged or what insurance pays. So I replied that I'm not responsible for the inadequacies of care you're exhibitiing either but here we are. And if you're doing it to me you're probably doing it to all of your patients.

April 2, 2025
A myRAteam Member

Am I tired of living my life around my RA and the treatments? I've kissed a lot of toads, so to speak, when it comes to treatment plans. Some worked... until they didn't. Some had side effects. Some never worked at all. Sound familiar? I do get tired, but my heart is thankful. I continue to be thankful that my doctor had so many choices. I was successful with a biologic in the early years of this journey. I did get joint damage after age 65 when I had to change to an infusion (that dreaded trial and error period). Then I found one that I've been on for years now with no additional Rx. Maybe it won't work forever, but it's worked for a long time. I do have some "comorbidities", I think they call them, PsA, OA, Uveitis, and the ever-present fatigue, but not the stuff that a lot of you deal with every day. I think there must be others on successful treatment plans who don't post or stop following the group when they don't feel the need for peer support. So, let me remind and encourage you not to give up while I am reminded of just how lucky I am. For me the key is controlling the inflammation. I couldn't really tell what damage would be left until the inflammation was controlled. The rest followed suit. I hope every one of you finds the right doctor, the right treatment plan, and the right support system.

April 1, 2025 (edited)
A myRAteam Member

If you have friends invite them over to your place. Have snacks, they could bring drinks perhaps.
Ask a friend to go for a walk with you.

April 3, 2025
myRAteam

It's completely understandable to feel frustrated when medication delays impact your life plans, especially something as important as a vacation. Treatment scheduling challenges can be particularly disruptive when dealing with infusion medications for RA. Having to constantly adjust your personal life around medical Show Full Answer

It's completely understandable to feel frustrated when medication delays impact your life plans, especially something as important as a vacation. Treatment scheduling challenges can be particularly disruptive when dealing with infusion medications for RA. Having to constantly adjust your personal life around medical treatments can feel overwhelming and exhausting. The best approach is to contact your doctor's office right away about this situation. They may be able to help expedite your medication or find alternative solutions. Healthcare providers need to know when these issues occur so they can better advocate for their patients and work to prevent similar situations in the future. While managing treatments can feel like a full-time job, remember to prioritize what matters most to you. If this vacation is important for your well-being, work with your healthcare team to explore all possible options for rescheduling your infusion in a way that could still accommodate your travel plans.

April 1, 2025

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