#newly diagnosed

[mx-jester]

so I've only recently begun my medical journey about my possible disability, and I'm hoping anyone with a better understanding of all this could give me some advise.

I don't have any professional diagnosis yet, although I've been using the term chronic pain & Fibromyalgia given that's what's most likely and what my experience has ben compared to the most. I'm set up to see a physical therapist at some point, and am able bodied. I'm still new to the world of having a disability, I never though it was abnormal.

I don't know if ill end up needing or wanting a mobility aid, the closest experience I have with them is older family members who don't like using their aids or using a pair of axillary crutches. I don't know what I can do to make my daily life at least a little better, I would like to be able to be more comfortable in life.

if anyone has any wish words for me, or any tips, or anything at all that you think i should know please do.

#text post #text only #disabilties #disability #disabled #chronic pain #chronic illness #chronically ill #chronic fatigue #fibromyalgia #fibro things #fibrolife #fibro problems #newly disabled #newly diagnosed #spoon theory #no spoons #spoonie #advice please #advice needed #advice welcome #tips #life advice

[my-person-suit-is-defective]

Finally got my official hEDS diagnosis!

I have A Lot of feelings about it and I'm not going to lie, 95% of them are negative, but I am really hoping that this will at least make my access to other necessary specialists at least a little easier

#ehlers danlos syndrome #chronic pain #chronically ill #disability #chronic illness #spoonie #new diagnosis #newly diagnosed #ahahah only took me 5 years to get an appointment to see this fucking specialist #so angry for so many reasons #not the diagosis tho #very happy about that

[bigboymoozz]

Ik it's a bit of a hopeless hope, but today as I was giving my brother his insulin shot for his breakfast i was asking him if it felt nice being able to sleep on his right sode since we just changed his g7 site the previous day. he was like "I hate this and wish this wasn't a thing. I kept forgetting what side i could sleep on" and I was able to use the eversense CGM as a hopeful example. The eversense CGM is (?) A small cgm inserted into your body (like a nexplanon) and can stay for around 6 months without changing it out, and the sensor is a sticker instead of a wire sticking out of you. And the website, when I looked at it last, said they're looking into developing a year-long one as well. The cgm from my research was invented sometime in '99, and since then has been slowly getting better. I was like "you know, we can only hope that the implants work really well and can lead to more innovation. Maybe one day they'll have a pod for both insulin and glucose and you can use it to treat highs, bolus, and lows? Literally the possibilities are endless" he's 13, surely by the time he's my age (20s) there's something interesting being talked about. In the subreddit I'm in for t1d, there's diabetics in their 60s saying how this is (pumps and cgms) is an insane development for them and that they wouldn't have even dreamed something like this would ever exist to help them. I just. Idk. I want to keep him hopeful a bit. He's already bummed that pancreas transplants aren't a regular thing t1ds can opt for, and if they were I'd be first in line to give him all of mine if I had to

#mark says #type one diabetes #newly diagnosed #let us have hope pls #the t1d subreddit is so gloomy and shoots down any hopeful message with #“oh yeah theybsaidbthat 5 years ago #start the 5 year clock again everyone!“ #like urg. let me give him SOMETHING to look foreward to.

[icarrythequotes]

“When you live with love and gratitude in your heart, you transform yourself and the people around you!”

— Shelley Peterman Schwarz // Multiple Sclerosis: Tips and Strategies for Making Life Easier

#love #life #heart #gratitude #transform #love life #live #Shelley peterman schwarz #MS #Multiple Sclerosis #disease #disability #newly diagnosed #quotes #quote #books #book #words

[headpainmigraine]

People with POTS, does sitting upright (in a chair?) make you REALLY symptomatic, or is this something I should be paying attention to?

I'm like presyncope, needing to get out and lie down. Mostly happens if I'm in a highback chair in an upright position with one knee up. I can sit down non-symptomatic but then the symptoms come while I'm sitting?

#pots #postural orthostatic tachycardia syndrome #newly diagnosed #feel like I'm gonna faint #just sitting in a chair for a bit #like the third time this has happened

[whatspringdoestothecherrytrees]

A few weeks ago I was diagnosed with ADHD . . . after blowing off my doctor’s suggestions to get evaluated for 4 years.

I’m in a weird place of reflection I guess. For me, I feel lucky because my Autistic compulsions and rigid routines and operating procedures and notes and reminders and alarms have helped me mask the chaos of my ADHD executive function.

But I can look back now with more compassion on my 14-year-old self, who thought subjects that were too easy or lacked instruction weren’t worth the time, who would hyperfocus on a special interest for 18 hours straight, who had so many interests and creative passions, who taught herself javascript and built cringey little websites and DM’d her online (only) friends, and wandered in the woods reading and writing novels, and examining interesting rocks and making notes about animals. Who was then told she was “lazy” and “coasting” and “wasting her gifts” because of a B on a science test.

In that moment, 14 yo me swore that no one would ever have that kind of leverage over me again. I finished uni first in my class, 19 years old.

oh - and the 1st semester med school me, irritated about now-disproven science we were required to learn, who had 17 tabs of pubmed articles open during lecture, reading the original research that disproved the crap some lecturer was blabbing on about. Once we got into organ systems, and actual facts and math and physiology, your girl was crushing it.

And it all is making sense. I have learned so much about myself and I am able to learn better and manage my focus cycles better. Oh and it explains my addiction to (dopamine-boosting) running, and why I had to leave all social media in 2016.

My screentime is now < 60 minutes daily - no wonder that’s helped so much.

let’s see how microdosing adderall on key days helps with my hyper brain/

#personal #actually audhd #adult audhd #newly diagnosed #audhd brain #actuallyautistic

[themaskedlady]

I rewatched the sitcome "Malcolm in the middle" and...

Am I the only one who recognized the strong ND vibes coming from that family? Sure, it's not really hard to see, but what fascinated me is that Hal also in some ways shows strong autistic traits... His hyperfocus on not very long lasting special interests (like painting or dancing) is so cute!

In his so cheerful hyper excitement I can totally find myself... Totally like me when I hyperfocus and let out my inner child to play...

Since I was diagnosed only 8 weeks ago and still hyperfocus on autism, I can't help but I search for autism everywhere and in everyone... :)

#actually autistic #autism #asd #sensory overload #neurodiverse #neurodivergencies #Sitcome #Malcolm in the middle #Searching for autism in everyone #Late diagnosed #Still learning #Newly diagnosed

[daintylildemon]

newly diagnosed

anyone else here somewhat new? or have advice for a newly diag’d system? I’m very confused which side is up and I feel like I’m lacking community a bit rn. I’ve only told two people and no one else can know yet or my brain feels like it’ll melt

#me #mental health journey #journal #did #did system #newly diagnosed

[jamiepage19]

Sadly, no chapter update today 😞

I’ve been a little under the weather this week and as a result, I haven’t made any new progress in chapter 29. If I feel better I plan on working on it tomorrow morning, with the hopes that maybe I can still post this weekend.

#haunted by the opera ghost #chapter 29 #this sucks #living with lupus #newly diagnosed

[crossstitchbossbitch-blog]

Bought myself a psyduck plushie because I too am dumpy, get headaches and am easily confused.

The dog would like nothing more than to rip psyduck apart at the seams ✨️

#psyduck #pokemon #adhd #neurodiversity #neurodivergent #neurodiverse stuff #plushies #dog pics #newly diagnosed #audhd

[spacebearthany]

I made a new autistic friend over the weekend and they immediately clocked me and asked if I was also autistic and I just honestly have never felt so validated in my entire existence as in that moment of someone just recognizing it and accepting it like that

#actually neurodivergent #newly diagnosed #autism #adult autism

[lexibles]

BPD is...

Second guessing relationships

questioning the very basics of your self

bursts of emotion

scary rage

Conflict resolutions comprised of dissociating

pushing away

and feeling alone

#borderline life #borderline personality problems #mental health #newly diagnosed

[tomb-bloom-noctem]

I have been formally diagnosed with autism now. It's kinda overwhelming not gonna lie. But I'm relieved to have some answers finally and to start some low dosage medication to try to help with the areas where I'm struggling bad and try to be a little more functional.

#tomb talks #autism #newly diagnosed #autistic

[in-asterism]

Hm. I don't think I am, in fact, ready to have the conversation with myself about masking that I was advised to have.

I think I shall just close this tab and ignore the implications :)

#autism #newly diagnosed #star says

[icarrythequotes]

“Laughter is like changing a baby’s diaper. It doesn’t permanently solve any problems, but it makes things more acceptable for a while.”

— Shelley Peterman Schwarz // Multiple Sclerosis: Tips and Strategies for Making Life Easier

#laughter #problems #acceptable #ms #Multiple Sclerosis #newly diagnosed #disability #disease #quotes #quote #books #book #literature #words #Shelley peterman Schwarz

[catznrobotz-blog]

shouting into the abyss

I don't know what to do or feel or say anymore and i just need something to make me feel a little bit more okay. I don't even need anyone to read this, I just need to get it out somehow.

For the last five years, in the midst of a bunch of other bullshit, my right leg has slowly stopped working. I need a cane to walk. My knee hyper-extends. I've had a bunch of falls. I was so desperate to have an answer. I used to yell at god and the universe to just tell me what this is so I could deal with it and adapt and hopefully fix it. All this time something inside has been nagging at me that this time its different than Endometriosis or chronic pain or just me being nuts. Part of me always knew that whatever it was, it would be life changing. It would be another thing that separates my life into a before and after. I tried everything to fix it and make it okay but nothing would. I just wanted it to be something dumb like a vitamin deficiency or a medication mix up or something that could be solved and fixed and done with.

A month a go my neurologist told me he thinks I have a progressive, degenerative disease called Hereditary Spastic Paraplegia. It only affects a small fraction of people and contrary to the name, it's not always inherited and can be caused by some mutation. Everything matches and fits and this is it.

My leg will not get better.

My other leg will have the same fate.

I might need a walker, a rollator or a wheelchair.

My gait will get worse and worse and if I can walk, I will have a very visible and identifiable disability.

I'm not a stranger to disability. I had a very common illness that was treated incorrectly and as a result, I have a permanent disability and chronic pain. My life became very small after that. I had to stop working a job I loved so much and go on disability. I couldn't drive my car because of all the medications. I stayed home living with my mom. I haven't dated in years. I never had kids. I never traveled to the places I want or do the things I want to do. I don't get to work at a job I was so good at, that made me feel like I was on top of the world.

Now I'm 35 and my life is over. My life will just get smaller and smaller and smaller until theres nothing left. I will never achieve my dreams or help people and will end up falling down and pissing myself instead. This wasn't supposed to be my life. I shouldn't be crying silently in the middle of the night in a twin bed.

All my life, I wanted kids desperately. If I could only do one thing in life, it would be that. Now time has run out. No one will want me like this. It wouldnt be fair to have a child and risk it getting this. I couldn't play on the playground or go on a hike with them or run on the beach.

Everything is gone now. I will never have anything I wanted or dreamed or just fucking needed to do. I can't stop thinking about it and crying about it and being so goddamn angry that I'm going to explode. I can't tell my mom how much this hurts because it will just hurt her even more. My brother doesn't care. I shut out all my friends except one. I see him once or twice a year and I'm so happy for him but it hurts to see him going through life and accomplishing things I never will. I can't ever use an exit plan because my mom can't take another one.

I just want to lay in bed and cry and scream until I have nothing left in me. This is ripping me apart and I dont know what to do anymore. I don't want to do this anymore. I just needed to scream this into the abyss just to get it out somehow or some way.

Fuck.

#newly diagnosed #chronic illness #chronic pain #rare disease #abyss #barely holding on #vent #angry #Hereditary spastic paraplegia