i am so tired of this fucking pain. and feeling like i have a respiratory infection & the flu every single fucking day of my life. this is no way to live. even while i lie here as still as can be, tears will slowly flow from my eyes & the tears feel like boiling water on my skin. i grew up in a stoic irish family where you handle. your. shit. but, i have learned that bottling emotions is toxic & i am trying to get better at "sharing."

my sleep has been plagued with nightmares stemming from my pain of having limbs amputated, being stabbed, being burned etc. my sleep is terrible, i am not eating substantial meals & just feel alone even when people are around.

if you made it this far, bless your sweet face. i appreciate those of you who check on me. if you want to help me with meals & a couple of my prescriptions this week, it is of course incredibly appreciated.

cashapp: $dryboneslive / venmo: dryboneslive

luv, cuddles & cauldron bubbles, the ghost queen 👻

London, UK, October 2022

Common earthball (Scleroderma citrinum)

A beautiful common earthball just on the brink of maturity, splitting to open to release the dark spores inside.

So, uh, does anyone here have (systemic) scleroderma? The last post was from a year ago 💀 but I may as well ask.

SOMEONE TELL ME WHY LIQUID NUTRITION/TUBE FORMULA AND HOMEHEALTH COMPANIES MAKE THEIR PACKAGES/BOXES SO DAMN HARD TO OPEN?? Like your customer base is malnourished /chronically ill/disabled people and y’all had the AUDACITY to make the boxes so hard to open that even my able bodied, male family members struggle to open it?? I know it’s expensive (god bless insurance actually paying for something for once bc there’s no way I could afford over 9 boxes a month at 72 dollars a box) and they’re trying to prevent theft, but I can guarantee that nobody who sees these shipments of giant liquid nutrition boxes is going to try and nab it.

Truth. 💪

Life is a journey. As individuals we each have are our own journey. No doubt. No question. And we are also on this journey as a collective. ⠀ Every day our paths collide. Intersect. Unite. Intertwine. Crash. Ebb and flow with others. ⠀ Mon Journée is all about my daily journey on this human experience we call life. Join me. Amazing things happen daily. To me. To you. To our journey. 🦋 ⠀ Podcast loading soon 🎙️ YT vlog coming 📺 ⠀ ✨ ⠀ #MonJournée #wellness #healing #survivor #mentalhealth #forgiveness #chronic2terminal #love #scleroderma #fibromyalgia #polymyositis #neuropathy #anxiety #diabetes #mytruth #pulmonaryhypertension #amputation #depression #stemcelltransplant #lightworker #grateful #advocate #art #peace #WeareONE#motivationalspeaker #intuitive #MyDay #MyJourney (at My Journey) https://www.instagram.com/p/CpR_OiGu-Pe/?igshid=NGJjMDIxMWI=

#DíaInternacionalDeLasEnfermedadesRaras #rarediseaseday #rarediseaseawareness #rarediseaseadvocate #scleroderma #schögrens #EsclerodermiaDifusa #28DeFebrero #UsenMezclilla https://www.instagram.com/p/CpLKjdELrzq/?igshid=NGJjMDIxMWI=

I been struggling with funds lately from being sick constantly and currently at the moment I had to take time off work. So I uploaded my art for purchase, I also take commissions & if you watch to help I’ve linked my ko-fi

https://ko-fi.com/comradepreet

https://www.redbubble.com/people/tigerresss/shop?asc=u

Blog goes on

It’s been quite a tough time since I started this blog. I’ve been talking, thinking, and reading about scleroderma more than I’ve ever done in my entire life. I mean my life after 2003 when I was diagnosed. Before that time, as most of you, I had no idea what that phenomenon meant. I’ve learnt so much, sometimes I think I could start teaching scleroderma at the medical university. I will start with teaching the students that this is a unique chronic disease that is incompletely understood by the medical profession and that each patient suffers from it in his or her unique way. In the most cases the patient gets thick skin caused by extensive production of collagen but sometimes the internal organs may get damaged too. And nobody knows why this happens. I will teach them that there is no cure found yet, but treatment does exist to prevent and treat many of the problems associated with scleroderma. The most important thing is that the patients are approached positively. You don’t have to be a ‘cheerleader’ and ignore the severity of the situation. What the patient needs is a sensitive expert who provides a realistic but at the same time a positive message. Fear and misunderstanding may cause more harm than the disease itself.

I can’t say it’s been very enjoyable to be occupied all the time with the scleroderma subject but at the same time surrounded by so many people who love me and care for me has given me huge courage to go on! Call it a miracle but I’m still full of energy and I’m not planning to give in whatever the doctors have to tell me in the coming weeks. Moreover, I’ve learnt how to breathe! In one of her columns that scleroderma patient Lisa Weber publishes in Scleroderma News, she explains how to breathe through your belly and improve your lung function. She is a real inspiration! I’ve started doing this exercise for about 10 minutes 3 times a day. I just take a deep breath and picture my stomach like a blowing balloon and then exhale until all air gets out. Again, and again. And while breathing I’m shouting at my body ‘Stop producing this bloody collagen! I don’t need so much!’

I hope it will listen.

well met, tumblrites. i am back in hospital...again. at least the staff at this hospital is v nice.

i am going to be an exhausted little ghost once i finally go home & would incredibly appreciate any help with my prescriptions, groceries etc. but, only if people can spare it. i absolutely do not want anyone donating if they are not comfortable doing so. thank you for the genuine care, you beautiful lot 🖤

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paypal: message for email

Okay medical stuff under read more

I might just cry today. That’s the plan, lol

I looked at my most recent rheum appointment’s notes, because I forgot you could do that online, lol, and because she seemed really patronizing and I wanted to know what she was really saying.

Well, okay. So if you’ve been reading these posts, you know the Mama Mayo ppl have been looking for dermatomyositis and I’ve had symptoms and test results cross over with scleroderma, but no one said that much about anything except that I was put on a new med that should work better for scleroderma-type/myositis-type diseases.

The note said she was treating me as a systemic scleroderma patient with the pre-condition but will simply keep an eye out for dermatomyositis—then listed why I have pre-scleroderma. Uptodate lists the exact symptoms and test results I got for it and goddddd

I wish she’d have just told me, like ?? (tho I have been a bit Intense lately … because I’m fucking scared)

BECAUSE IT’S A REALLY FRIGHTENING CONDITION

#2061 - Scleroderma sp. - Earthball

Photos by Jasper Dean.

Puffball fungi that tear open when mature, to expose the powdery sporemass to the environment. Surprisingly, in the Bolete Order. Like most boletes, mycorrhizal, usually with shrubs and tree, and in fact some species are used as inoculants to encourage sapling growth.

This month my mom has been seeing a doctor because her leg pain was very bad and it felt like a python was wrapped around her leg, squeezing. Apparently, my mom had tissue connectivity issues including Scleroderma, which is an autoimmune disorder where your body produces too much collagen in the skin, causing it to thicken. Sometimes it isn't problematic unless it squeezes around your internal organs. She also tested high for lipoprotein, which she is genetically dispositioned for, which makes the blood thicker and we think it might have contributed to her having mini-strokes when she was 30. There's also this test that they had her do:

Apparently, she can't pass this test on one side of her body. This indicates damage in the cerebellum. There is going to be further testing for the possibility of Multiple Sclerosis. There's going to be more testing this February, including a brain scan, to see what's going on. Mom has scientific curiosity, so she is fascinated in researching the medical information. Similarly, I am relieved because mom has had mysterious health problems for years, so far from worried I am just curious what they find.

Simultaneously, apparently, my uncle from Montana passed out one day and was taken to the hospital near the beginning of the new year. He had multiple blood infections and dead tissue around his feet. He had internal bleeding and might have been on oxygen at one point. Mom was almost certain he was going to die, but after several days, he's stabilizing-ish, he'll need a foot amputation, though. Mom's been keeping us all updated. She's been keeping near constant contact with her aunt, mom and both her brothers through this (less so the affected brother, they hadn't seen each other in over a decade and a half so his wife hasn't even been updating my mom directly, mom's been getting news from her mom).

Remember, your journey is yours. Take your time, love. Be gentle with yourself and your own growth on this journey called life. 🌻 ⠀ I see you 🦋 ⠀ 📷 credit @wonder_doodles ⠀ Podcast loading soon 🎙️ YT vlog coming 📺 ⠀ ✨ ⠀ #MonJournée #wellness #healing #survivor #mentalhealth #forgiveness #chronic2terminal #love #scleroderma #fibromyalgia #polymyositis #neuropathy #anxiety #diabetes #mytruth #pulmonaryhypertension #amputation #depression #stemcelltransplant #lightworker #grateful #advocate #art #peace #WeareONE#motivationalspeaker #MyDay #MyJourney (at My Journey) https://www.instagram.com/p/Coygj3-LIs-/?igshid=NGJjMDIxMWI=

Increasing evidence shows that SSc is related to various occupational and environmental factors, such as silica exposure .

The risk of SSc in silicosis patients is 28 times higher than that in the general population .

The clinical characteristics of SSc patients with silica exposure are different from those of SSc patients without silica exposure, such as the degree of dermatological disease and of visceral involvement, and the degree and type of autoantibodies 

Key Points

•Concomitant silicosis worsens SSc patients’ prognoses.

•For individuals with occupational exposure, close observation of the symptoms of SSc, early diagnosis, and interruption of exposure may improve the prognosis.

•Gangrene, Scl-70, elevated BNP and cardiac involvement are independent risk factors for overall mortality.