Overwhelmed

Hello all, this is my first time posting here on the site.

I’m not sure how to begin I guess, but just knew I needed an outlet of some kind and reassurance by joining the site that I’m not just being “dramatic” when I feel the way I feel…

From 2015 to 2020 I was living alone in a city away from any family, was working full time as a zoo keeper, and part time as a yoga instructor. I lived fairly independently, and dealt with a lot of different circumstances on my own and to be honest felt really good about how my life was going and what I was accomplishing. I overcame a divorce, was getting regular promotions and opportunities at work, I managed panic disorder, was financially in a decent situation and recovered from two non-lupus related surgeries/procedures well.

I decided last summer to move back home to be closer to family mainly, as I felt I was missing out on everything since time off was scarce. When I first moved I decided to take a veterinary technician job, with the intention that I would eventually transition back to zoo keeping, and continued teaching yoga part time here. I felt the vet tech job was beneficial also considering I have three cats (who are like my world) and the benefits of working at the hospital would be great for them since they are starting to get a bit older as well. I also met someone almost immediately after moving back and things got serious quickly, and have really enjoyed being a part of my family again. So things seemed to be going well generally, I didn’t love the job but there was much more to be grateful for.

I attempted several times to get into the zoo (it is very competitive) and was starting to get close, when I started noticing progressive pain in my joints and my mouth ulcer flares (which I’ve experienced my whole life) started to get more frequent, but I guess didn’t think much of it. In May of this year, one of my cats got suddenly very sick and needed emergency surgery to remove an obstruction, and ended up being diagnosed with lymphoma which he is now on chemotherapy for. He had a very long and hard recovery after the surgery, and it has cost me a fortune to keep up with his medical expenses, but he is my responsibility and I’m happy to do it of course and everything has payed off as he is basically normal again now. Following his surgery my symptoms seemed to worsen, and I decided it was time to see a doctor about it all, but this time my panic attacks seemed to have came back and I was having a hard time not feeling anxious about everything. This doctor visit is when they found an initial abnormality in my blood work indicating possible lupus and was then referred to a specialist to begin further testing… I also at this time received basically what would lead to a job offer at the zoo…with the condition that I would have no health care for the first several months of working there…so I pondered on that for a bit and eventually decided that in the long run it was not a smart idea given my current medical status, as well as my cats recovery and the fact that he basically had unlimited access to a vet if needed at my current job. Though I know it was the right decision, it really crushed me to have to pass on the opportunity that I might not come again and I kind started to feel that I lost a little part of myself…

After making the decision to pass on the job my symptoms seemed to worsen. I started to notice chronic migraines, and light sensitivity. Sunlight, flourescent light, even just looking at white paper all seemed painful to my eyes. I started feeling tired more often and aggitated despite restarting anxiety medications. After finally getting in to see a rheumatologist I got several exams, tests, and x rays done to determine if the cause of my symptoms and just sort of kept on chugging on. Along the way, my then boyfriend and I decided to get engaged, I started teaching more classes and I started gaining a little more responsibility at work, so was feeling slightly more purposeful again despite feeling not great a lot of the time and the added new symptom of chest pain and tightness, which only seemed to be worsening my anxiety. Then in the beginning of October once all my results came in, I was officially diagnosed with SLE lupus, celiac disease, and a severely low DHEA, and I was sent to do more testing for antibodies that may cause higher risks for blood clots, which seemed to make things more problematic because if positive then that meant I would need to find an alternative medication for the one currently managing symptoms regarding the previous surgeries I had. I honestly knew next to nothing about any of these diagnosis, and suddenly felt so overwhelmed with everything. My fiance and I have since then started doing what seems like never ending research on triggers, symptoms, medications, management, all the things basically. The doctor decided I should start on hydroxychloroquine and DHEA supplement, which about two to three weeks into taking my symptoms somehow seemed to just plummet my health probably along with the emotional stress of processing all of the information. I ended up going to the hospital for possible blood clots and severe chest pain, and once discharged started on a round of steroids to control the flare up I was in. After the steroids were done I was to restart the hydroxycloroquine without the DHEA as it seemed my body was not tolerating one or the other or them both together. I was in and out of work and teaching through out October and November due to this, and even though I know there is perfectly good reason, and my manager has been so great about everything, I just feel so incredibly incompetent. I feel like I’m not who I used to be, this disease makes me feel so small…and incapable at times and I dont know if it’s just because my DHEA is out of wack still but I experience sleepless nights and concontrollable crying at times. Over the last 2-3 weeks, I get confused often and find myself not being able to even just explain how I feel or what I’m thinking at times. I feel like I’m just increasingly becoming a burden by the day, and feel like I’m a source of stress in other people’s lives, and I’m not sure how to overcome all of these feelings.

Yesterday I took my other two healthier kitties in to get some vaccines and annual exams done, come to find out one needed x rays due to some abnormal sounds in his chest and heart that ended up needing to sent out for consultation from a specialist. This morning his results came in that there is the beginning of fluid in his lungs and he will need an echocardiogram to further analyze if this is due to heart disease, infection or another underlying issue. He will have this done in a couple of days, meanwhile my wallet is screaming at me for how much this will cost as I just received bills from the hospital visit I have in October, along with the steady bills I feel I’ve been racking up from all of the tests I’ve been going through to find more answers regarding my SLE. I had my follow up bloodwork taken last week to guage if the hydroxychloroquine has been working, and have my appointment to receive my results the day after my cats echocardiogram, so just two more bills I know going to have to worry about later.

I feel as though I went from navigating life fairly well to suddenly dealing with this snowball effect of stressors, symptoms, financial obligations, and appointments constantly just growing. I feel like I’m failing somehow and like I don’t know how to ask for help or what I even need help with anymore, it’s just so much to keep track of. I’ve attended a few support group meetings and they have made me feel more scared somehow, but am trying to attend Lupus seminars to better understand my condition. To the best of my ability I try to practice self love and patience, but it just feels like a lot of things are quickly falling apart and I don’t know how to catch all the pieces. When discussing work options with my fiance we decided it might be best for me to work part time hours at the vet hospital, and teach more often since I have more rest time with that schedule and honestly feel best when I’m teaching. It’s a transition I’d like to make to teach full time anyways, but financially is not as rewarding. But we felt it was a sacrifice worth taking if it will help with my health, but I feel like my other family member involved disapprove of this. I don’t know how to satisfy everyone and all of the obligations I have, and felt I needed a safe space to share and gather information from others. Maybe even to find inspiration if possible.

Anyways thanks for listening
Miranda

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Miranda!!!

Oh my word! I’m a stranger to lupus – I’m a patient in one of the other communities run by Ben’s Friends – but I think the main thing I can say to you that is helpful is that discovering a condition like lupus and all of the things you’ve described is a massive blow to anyone’s confidence, so I want to encourage you that I think you’re doing pretty damned amazingly. Honest.

So you’re overwhelmed. I should think you are!

I think the decisions you’ve made about ensuring you’ve got the medical cover you need, about taking on a blend of work that you can do, about relegating “career” to just stay in control are all great decisions as far as I am concerned.

I’m going to hunt around and try to get you some lupus support. Welcome to the community! I hope we can help you feel “normal” – like the rest of us – and supported.

Very best wishes,

Richard

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I appreciate the kind words. Trying to keep my head up and remember that there is treatment, it’s just a matter of what treatment is best. Grateful to even just have found this community and I’m excited to see how to start rebuilding from here.

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That’s a good step: a diagnosis knocks the stuffing out of you. To be able to start to talk to yourself about rebuilding is very mature and very positive.

I’m sorry my little nudges in the background didn’t bear any fruit. I’ll ask the other moderators who usually look after this community how we might help. Otherwise, I might have to learn something about SLE!

Really good to hear from you. A positive mindset is definitely the right way to go.

I’m here, even if nobody else speaks up!

Best wishes,

Richard

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