u/madpeezy

Yall,

I’m tired. I’m tired of waking up with a new symptom and I’m tired of having to find another specialist to add to my roster. I did not think MCTD would impact this many body systems, and I especially didn’t expect them to keep coming one at a time over the years…

I’ve developed severe dry eye from the inflammation, and Restasis was prescribed. It’s yet ANOTHER medication to remember to take.

I’m really exhausted managing this many specialists; pain doctor, rheumatology, cardiology, neurology, pulmonology, dermatology, now ophthalmology. I’m resigned to the fact that MCTD affects every single fucking bodily system and I’ll just keep taking fistfuls of medications until I croak.

For the past few weeks I’ve been feeling nauseous from all the medications I take. I want to cut back on some, but I honestly don’t even know where to start- which doctor to bring this up with? Rheumatology since that’s kinda what’s controlling my life now or my pain doctor since that’s one of my biggest issues?

I feel completely consumed by this disease and what it takes to “manage” it… I don’t think I’m managing it very well honestly. I thought I could handle it when I first got diagnosed, maybe because I was just happy to have an answer, but now I’m just overwhelmed. My life has changed so much, I’m disabled some days by it, and other days I’m ok. I’m turning 32 in a few weeks and am trying to find a job that can accommodate my physical needs and all my appointments.

It’s tough out here, especially because people outside this subreddit don’t understand this disease at all 😞

This is a rant. I applied for a file clerk/ receptionist role at a law office (estate planning, solo lawyer) and the culture seemed super supportive and like the lawyer really valued her employees.

I had my in person interview two days ago and the lawyer sat in for the first ~10 minutes. She shakes my hand, says hello and then immediately asks me if I speak Spanish (bilingual was a “positive”, not a requirement). It was super awkward for the first question , and something I feel they should have asked me on the phone. I said no and she starts rapid firing questions like:

“Have you experience the loss of a love one?”
“Did you seek help for your grief?”
“Have you lost a family member specifically?”
“Tell me about yourself, do you have a partner?”
“Tell me a time you felt unsupported at work”
“Can you handle clients being upset & emotional? We deal with clients family members after they have passed on, you need to be able to handle upsetting situations. ”
“Have you ever been rattled by a client? Why? What happened?”

I felt myself stumbling through my answers, the pacing was so quick, and it was clearly a situation where she hadn’t read my resume or been briefed on the fact that I’ve been a veterinary receptionist in a previous role. I’ve had to deal with clients experiencing the worst day of their lives (finding out a pet is sick/ euthanizing a pet/ having an unexpected $3k bill ) and having to charge them for their visit as they’re falling apart in front of me. I have experience with extremely emotional situations, including devastating grief.

I feel like those skills were very transferable to this job, and I was really excited about the supportive office environment, which the two other women interviewing me after the lawyer left kept saying was the best working environment they’ve had, but I still walked out of the interview having an ick feeling by the questions the lawyer asked me and how she asked them.

No, I don’t have a partner, but thanks for reminding me of that lol, I’m sure she just wanted a more personal “get to know me” answer, but you’re not even supposed to ask that question. It was also awkward explaining that I’ve dealt with personal loss, and then saying what I’ve done to get through it (therapy), just for the lawyer to then ask if I’ve dealt with family loss, which felt minimizing of the fact that just because my friend wasn’t a blood relative, that loss didn’t count as much? (She was my very best friend that passed, like a sister to me, and I’m still grieving her everyday, so that stings) I’m just not in a great place mentally and I left feeling stupid about how I stumbled through all these weird questions and like I don’t even want to work with this woman if I do get the job.

I understand she’s looking for someone who can remain professional in the face of emotional clients, but if you had looked at my resume you could have seen I’ve done just that. It felt like none of my answers were good enough for her, she barely reacted to them.

Might just be my depression talking but even 2 days later I just have this weird feeling in the pit of my stomach that’s warning me about this place, even though the other two ladies assured me the lawyer “wants the best for everyone, pours herself into us, and gives you all the tools to succeed”.

Anyone had an interview like that before?

Hey all,

This is just a rant/ I'm struggling. I'm so exhausted. I usually average 4-5 doctor appointments a month, but I've been unemployed since last October and have been trying to make the most out of my freer schedule to get everything done.

I've had 9 fucking appointments this month.

Pain doctor x2

Sleep Study

Rheumatology

Labs x2

Jaw/migraine panel botox

Auriculotemporal nerve block consult

Eye doctor

When does this shit end? How are we supposed to function in society when we're working full time jobs just getting medical care? This doesn't even cover the amount of time spent making appointments, driving to them, rescheduling, waiting for your doctor who's always 25+ minutes late, making new appointments, checking insurance issues, picking up prescriptions, etc. Non chronic pain/illness folks have no idea how much time and effort goes into taking care of your failing body.

I'm just getting to the end of my rope here. I'm in so much pain, I feel like I'm not being heard, I don't know how I'm supposed to manage so many appointments, I don't know how to continue like this. I don't know how to get a job that accommodates all my appointments while being able to pay my bills as a single person, and I'm not at the point where I can qualify for disability.

I'll be 32 in June and this pain has changed my life so much already. Looking towards the future seems impossible right now. I'm already scheduled for 3 appointments next month. I'm burnt out.