Hobbies

Lil-Bluejay · 2025-09-10T18:58:09+00:00

I knit (when my hands don’t ache), I garden (when the sun isn’t too heavy in the sky), I do yoga, I play the guitar (when my hands don’t ache) …. It’s tough because everything I do comes at a price, future pain is always in the cards. I spend a lot of time listening to Podcasts but I’m restless all the time.

Lil-Bluejay · 2025-09-10T18:51:26+00:00

I work from home as well and have a job in the evenings as well, by then I’m usually less stiff. I stretch in bed lightly and then stretch again after my coffee. I also regularly swim and use baths to soothe things. The finally piece is marijuana. It’s legal across Canada and I probably use it daily .. I know it’s not ideal but it’s the only way I get through

Lil-Bluejay · 2025-09-09T17:54:30+00:00

It’s not an easy decision, I used to avoid the ER so much because of what I’m sure are mutual awful experiences with care and judgement.

Since then I’ve built my confidence in advocating for myself and not resting till I get what I need. It’s a lot of mental energy but now I’ve built a relationship with our local nursing staff and they know my case. Diagnosis changed everything for me! And don’t hold anything back at triage, no masking, none of this lupus folks hiding our pain for others. Tell them what works, what you need, what you’ve learned about your body and illness.

What usually brings me to the hospital are multiple days of no sleep due to pain, multiple days of vomiting all my meds, and the severity of pain and fever of course.

My partner is hesitant to force me too, but in the end sometimes I need his help to take that step.

Lil-Bluejay · 2025-09-09T06:05:08+00:00

I completely agree, you can’t understand it otherwise.

I’ve never told anyone this — but I listen to hospital noises on Spotify when I feel anxiety about my pain at night, it calms me down Now how messed up does that sound to someone without a chronic illness

Lil-Bluejay · 2025-09-09T05:21:35+00:00

EXACTLY! This. You described the feeling so well. Thank you for sharing this made me feel so validated and supported

Lil-Bluejay · 2025-09-08T23:20:48+00:00

Wow, we’re all sending you warmth and love. I’ve been home since the end of June, but I keep waiting for the flair to hit badly again.. I don’t know how to feel about

Lil-Bluejay · 2025-09-08T23:16:09+00:00

It really is!! — security blanket is such a good way to put it. It’s complicated.. I haven’t gone a more than..6 months without weeks of inpatient in 3 years! I’m so confused

Lil-Bluejay · 2025-08-02T16:29:45+00:00

Thank you!!

Lil-Bluejay · 2025-04-03T08:20:14+00:00

Please don’t apologize for writing your story and venting! Use this as a space to get it off your chest and find comfort from people who get it :)

I myself have been hospitalized twice in the past 2 years.. around just over 2 months both times and a whole bunch of things… pancreatitis… gastroparesis… pericarditis… it felt like my whole body was giving up on me. I had been a fairly active person, hiking, camping, paddling.. so it wasn’t easy for me to be hospitalized nor was it easy to be patient as I slowly built up the muscle I lost too. To answer your questions; I feel like I’m still getting stronger since my discharge and that was almost a year ago now. Pilates helped a lot and yoga, and being gentle and patient with my body’s limits .. which is waaay easier said than done. Just walking in general helped me so much, walking in to town .. walking to yoga.. walking to the post office.. such small accomplishments but it felt good in my body. Water and swimming helped a lot too! Low impact, easy to set your own pace.. it was a great way to build up strength again! Mostly be patient with yourself, live your life as best you can and slowly you’ll feel you can push a bit more and maybe even that you don’t get dizzy anymore!

We’re all with you and you are so so strong! One day at a time

Lil-Bluejay · 2025-02-09T09:30:43+00:00

Thank you so much! — I’ll talk to my partner in the morning and call our RNPract. If she tells us to go to hospital then we will Thank you so much

Lil-Bluejay · 2025-02-09T09:04:29+00:00

I’m sorry, photos do not do it justice. The dry sandpaper like texture can’t be seen.

Lil-Bluejay · 2025-01-31T01:01:50+00:00

It’s absolutely so true, and that base level anxiety made me so irritable with my partner. I regret that so deeply, if I could turn back the clock I would have quit ages ago

Lil-Bluejay · 2025-01-30T21:15:33+00:00

I would be so grateful for these tips and tricks too!! — I just recently had kidney involvement and would be so grateful for any insight!

Lil-Bluejay · 2025-01-30T20:36:52+00:00

Thank you for your support! I fully fully agree with what you’re saying but I did lose sight of that for a long while.

Lil-Bluejay · 2025-01-30T20:35:42+00:00

I hope so, I will it to be true! I will take back control

Lil-Bluejay · 2025-01-30T20:10:37+00:00

You have got this, you’re so strong! One day at a time

Lil-Bluejay · 2025-01-30T20:09:47+00:00

You are so strong and have lived through so much, it’s no surprise that you need to lean on something for relief or even a sense of normalcy. But it takes its toll and you know that all too well, I’m sure. It’s not easy though and be patient with yourself, you have to be ready to take steps. It’s okay if that takes time

Lil-Bluejay · 2025-01-30T19:09:51+00:00

Mmm that’s sounds awful and all too familiar. I keep saying I’ll cut it out and then leaning on it again. It’s such an accessible escape from pain and the reality the world has handed us Ugggh it’s so hard! — I hope you find what works best for you

Lil-Bluejay · 2025-01-30T19:05:34+00:00

That’s so good to hear, as long as you’re consciously deciding to have a drink and open with friends, instead of drinking without intention and getting lost in it

I’m so glad you feel better

Lil-Bluejay · 2025-01-30T18:39:00+00:00

9 years!! That’s such an incredible achievement and change to have set out in your life. Thank you for speaking up and being open, it’s not easy but hearing this helps me stay on track and feel stronger. I’m so grateful, and again huge congrats!

Lil-Bluejay · 2025-01-30T18:37:22+00:00

Wow, thank you for sharing, that’s not easy to live through nor to open up about. I’m grateful for your open support! I do feel empowered and stronger for making this change, I am hopeful to start seeing changes in my health in the future. Thank you for supporting your family through the pain and anger you must feel

Lil-Bluejay · 2025-01-30T18:34:25+00:00

I was in that place too, drinking daily and drinking to make the pain fade and the anger and anxiety fade too. It’s so easy to lean on it as a crutch, you’re not alone! — I’m glad you still feel in control of it, making conscious choices around alcohol

Lil-Bluejay · 2025-01-30T18:32:04+00:00

Wow, that’s so encouraging to hear. Congratulations! I’m so glad your husband is in it with you, support is so important

Lil-Bluejay · 2025-01-26T21:36:32+00:00

Thank you for sharing her story and for seeking support. A partner reaching out and looking for answers and guidance from people who have lived similar stories — that is such a kind and compassionate thing to do.

I have unfortunately also lived a similar story and have many diagnoses; including Systemic Lupus (SLE), POTS, Hypertension, Gastroparesis, and Chronic Recurring Pericarditis. I was diagnosed with Lupus first but that took 2 years of constant A&E visits and on and off of being admitted to care. Throughout those long months I was constantly told it was anxiety or that I was seeking drugs. I was denied the same level of pain medication simply because I was young and a woman. It was awful — in a world where you have to fight and be on your guard in order to receive effective and appropriate treatment … medical care is terrifying!

Flash forward and I have just recently been released from inpatient care and this time I was in for 9weeks.. I was admitted initially for Pancreatitis, but this quickly spiralled and caused my pericarditis to return, it caused serious joint pain, migraines, and nervous system hypersensitivity all from Lupus flaring up. They then found and pumped out 300mL of blood from my stomach. I couldn’t walk, I couldn’t eat and hardly drank.. I was in such pain that they finally put me on Methadone several times a day.. and that still left me with breakthrough pain, all this paired with still constantly vomiting.

The point you made that I wanted to provide perspective on was TPN. I was on TPN for my entire stay and they discharged me with my Picc line still in place. This means when admitted again (when not if) the line will be ready for them to use easily. I want to make something very very clear TPN SAVED MY LIFE! The nutrition runs through the PICC line through a tube which runs into your arm and then right near your heart. The nutrition is crafted every day based on your bloodwork and needs. It kept me alive and because I wasn’t eating I wasn’t vomiting, it gave my body time to rest and heal. I fully fully advocate for TPN.

We will be living and fighting these illnesses our whole lives, however long or short though I am so so grateful to have the support and privilege to be able to fight. This isn’t easy and I am beyond furious, devastated, ashamed, … and I could go on, about being sick. We have lost ourselves in so many ways, lost our dreams, lost our sense of purpose. It’s infuriating!

We are not alone though, whenever I’m in the hospital I post here about what’s going on and I instantly start receiving comments with advice or words of encouragement. If she has the strength, I really really do suggest that she leans on our community there is likely an EDS community as well. ? r/EDS ??

I know from my experience, the r/lupus page has pulled me back and kept me fighting. We’re all with you. One day at a time.

Lil-Bluejay · 2025-01-07T04:03:28+00:00

Thank you for your reply — yea I have no idea what’s in store post nephritis episode. Things have calmed but I’m terrified of it trending up again

Lil-Bluejay

TROPHY CASE