iconicallychronic

[iconicallychronic]

I never got that appointment. What I got was an outdated printout telling me that being a little more flexible isn’t a bad thing.

I’ve given up the idea of anyone taking any of this seriously. They won’t even take my new condition, which is basically autoimmune, properly.

Everyone wants to be cool and rare and the first until it means you get told off by doctors because the doctor is misinformed while you can’t even get a sock on your left foot normally cause your knee is slipping so much.

Thank you for telling me it’s impossible for me to have hEDS cause my bloods are clear, now just tell that to my knee that‘s making me limp. Oh, and if you could just deal with the thing that I asked you about, that would be great.

Diabetics that go in for tummy aches don’t get told off for being diabetic.

I’m just so tired.

Genetics Prep

I'm so scared about my genetics appointment. Like, will the geneticist be nice? Will they consider classical as well?

I've gone overboard preparing notes. So far it's 8 pages.

Page 1 - symptoms/signs split into: Brain, Musculoskeletal, Craniofacial, Skin, Digestive system, Reproductive system, Renal system, Cardiovascular system, Immune system and Sensory systems

Page 2 - family history, as nobody has been diagnosed but both of my parents show EDS signs so I've written down things I know about

Page 3 - hypermobile EDS criteria, things I pass highlighted in green, ones I don't in pink

Page 4 - All EDS types and how much they resemble me

Page 5 - Classical and Cardiac-Valvular criteria and again highlighted with green on what I have and pink on what I don't

Page 6 - Classical-like and Arthochalasia criteria, highlighted

Page 7 - Marfan criteria, I score 12 which suggests EDS or Loeys-Dietz

Page 8 - Loeys-Dietz common characteristics and symptoms to prove I don't have the features

I think this is probably too much but I don't wanna forget anything important and I wanna show the geneticist that I'm not some hypermobile kid that's heard of EDS and freaked out. I also want them to realise I'm a genetics student and I know what's going on, so I don't need to be babied.

Like, what happens in an EDS genetics appointment? How much prep did you do? How much do they look at family history? Will they test me for Classical mutations if I pass Classical and Hypermobile criteria?

Will my heart be scanned? Like, I suspect some issues with my heart valves. Will they refer me to a cardiologist? How long will it take to get a diagnosis?

[iconicallychronic]

Life Update

I had a rash that didn’t disappear under a glass. Found out in hospital that it was this little thing called IgA vasculitis .

I’m 21 and a cis-woman. This normally affects 10 year olds and mostly boys. Doctors said it would only be here for 6 weeks and only go on my legs.

8 months later I still have it and I’ve had it everywhere from my breasts to my fingers to the undersides of my feet. Specialists yet again aren’t that interested and are pushing me off to deal with it by myself.

Literally got told by the rheumatologist “oh it’s just chronic in some people” with no extra explanation. I could get kidney damage from this!!! Is that more likely with the fact it won’t go away? How do I deal with it? What’s going to happen? I can’t even find anything detailed about what happens if you get it as an adult and it never goes away.

Obviously I’m scared and the doctors don’t even care. Like, I had pre-existing bowel issues and joint pain which can both be caused by IgA vasculitis so they’re ignoring all the issues that may be being worsened by the purpura (vasculitis)

The best bit. When I actually find a doctor to care about the hEDS I used to fit criteria for, they can’t diagnose me. I now permanently have inflammation markers in my blood stream which automatically make hEDS diagnosis impossible.

[iconicallychronic]

please stop trying to compete with my chronic illness. i am sick and will be for a long time and it is something you will never understand. your minor health problems although they may be terribly tragic for you do not equate to my illness. you have no idea what its like not to be able to even sit upright for a day because you wanted to try and do ten minutes of light exercise. you have no idea what its like to faint in a public place. you have no idea what its like to spend twenty minutes trying to form a sentence because your brain fog is so bad. you have no idea what its like to have migraines weekly that make you vomit until you slip into unconsciousness because that’s the only way to make the pain stop. and that’s just my physical health. yes, i understand you might feel shitty, but this isn’t a competition this is my life. 

[iconicallychronic]

Health (deteriorating)

[iconicallychronic]

Genetics Prep

I'm so scared about my genetics appointment. Like, will the geneticist be nice? Will they consider classical as well?

I've gone overboard preparing notes. So far it's 8 pages.

Page 1 - symptoms/signs split into: Brain, Musculoskeletal, Craniofacial, Skin, Digestive system, Reproductive system, Renal system, Cardiovascular system, Immune system and Sensory systems

Page 2 - family history, as nobody has been diagnosed but both of my parents show EDS signs so I've written down things I know about

Page 3 - hypermobile EDS criteria, things I pass highlighted in green, ones I don't in pink

Page 4 - All EDS types and how much they resemble me

Page 5 - Classical and Cardiac-Valvular criteria and again highlighted with green on what I have and pink on what I don't

Page 6 - Classical-like and Arthochalasia criteria, highlighted

Page 7 - Marfan criteria, I score 12 which suggests EDS or Loeys-Dietz

Page 8 - Loeys-Dietz common characteristics and symptoms to prove I don't have the features

I think this is probably too much but I don't wanna forget anything important and I wanna show the geneticist that I'm not some hypermobile kid that's heard of EDS and freaked out. I also want them to realise I'm a genetics student and I know what's going on, so I don't need to be babied.

Like, what happens in an EDS genetics appointment? How much prep did you do? How much do they look at family history? Will they test me for Classical mutations if I pass Classical and Hypermobile criteria?

Will my heart be scanned? Like, I suspect some issues with my heart valves. Will they refer me to a cardiologist? How long will it take to get a diagnosis?

[iconicallychronic]

Rheumatology, Genetics and Vampires

Today rheumatology got back in touch with my GP asking for bloods and to refer me to genetics.

So I've got referrals for genetics and rheumatology. I'm gonna have my bloods done and any long term musculoskeletal issues are to be sorted with a physio as I won't be put under a consultant.

I hope they'll do a heart scan in diagnosis cause I suspect I have mitral valve prolapse. Would be annoying if I had to be referred to cardiology for that and had to wait however long for that too.

The GP told me to pick up the form for my blood test today. So for some reason I have the stickers and specimen bag??? They're gonna take two samples. Last time I had blood taken I had a full on freak out and had to be held down by 2 nurses and my mum while the other nurse took the blood.

I'm worried genetics will want to take my blood too to check it's not other types of EDS which I technically also fit criteria for.

I swear all healthcare professionals are vampires that just secretly want your blood.

[iconicallychronic]

sending you all my love, I hope you have a wonderful day x

Thank you so much <3 I hope you do too

[iconicallychronic]

Doctor: Have you tried keeping a headache diary?

Me: *pulls out a notebook full of numbers tracking every symptom and possible trigger I can think of, along with pages and pages of detalied description*

Doctor: … wow, okay, that’s too much actually

[iconicallychronic]

Toddlers are so pure. She doesn’t understand that we help her with certain things because she’s little. She thinks that everyone just helps each other like that. So she tries to blow on my food and cut it up for me and tries to help me put on my shoes.

[iconicallychronic]

I feel like this is a completely valid answer. 😂

Rating my pain on a scale of 1 to 10 has never really made any sense to me. There is so much more to it, and fatigue is also painful in it's own way.

[iconicallychronic]

In one of my university modules we often talk about eugenics and morality around screening and aborting pregnancies and screening certain populations which are more at risk of certain mutations.

In one seminar our lecturers split the class into 2 and I had to argue why Iceland almost ‘eradicating’ Down Syndrome was a good thing. The lead lecturer used the wording of a newspaper headline and even took time to explain that eradicate is in no way the right word (despite us all knowing that).

The article was about how Iceland had much more screening for Down Syndrome and how mothers were more likely to choose abortion if their foetus was found to have it.

One of the people in the ‘For’ group with me said about how his best friend’s sister has Down Syndrome and how he felt like he was having to argue for why she doesn’t deserve to live. 

The only argument the ‘Against’ group could make was being aggressively pro-life and so against pro-choice that you’d think we were in a country where women’s rights were a fairy-tale.

Is that how some able-bodied people see us? Something to be eradicated. I realised how easy it is to argue that we should be killed for the greater good and how hard it is to argue back against that with facts over feelings.

[iconicallychronic]

UhHhHhH, iT’s AcTuAlLy SpEcIaLlY-aBlEd

“you can do anything, don’t let the fact you’re differently abled stop you!!!!1!”

[iconicallychronic]

<3

strawberry snake

[iconicallychronic]

i will no longer be referring to my chronic illness as such. instead I will only refer to it as an UNBREAKABLE ANCESTRAL CURSE.

[iconicallychronic]

It's not fair. I'm 19 and realising my body is failing me.

My joints are failing me. My digestive system is failing me. My immune system is failing me. My cardiovascular system is failing me. My renal system is failing me. My auditory system is failing me. My reproductive system is failing me. My brain is failing me.

It's not fair! I want to mourn the life I could've led. But I also don't want to be pathetic and not be thankful for the gift of this life.

How am I meant to see my life as a gift when my entire body is in some way failing me?

[iconicallychronic]

“Ooohhh, I’m just SO quirky!”

I can only intimately speak for my own experience and not that of the broader disabled/chronic illness community; I don’t have a right to, but there is something a lot of us agree on: don’t romanticize us. 

Whether it’s:

General Anxiety Disorder (GAD)

Depression

Bipolar Disorder 

Borderline Personality Disorder (BPD)

Dissociative Identity Disorder (DID)

Obsessive Compulsive Disorder (OCD)

Attention Deficit Hyperactivity Disorder (ADHD)

Attention Deficit Disorder (ADD)

Auditory Processing Disorder (APD)

Chronic Migraine

Chronic -Anything- Pain

Post Traumatic Stress Disorder (PTSD)

Childhood Post Traumatic Stress Disorder (C-PTSD)

Cystic Fibrosis (CF) 

Autism

Scoliosis

Kyphosis 

Arthritis

Rheumatoid Arthritis

Eczema 

Premenstrual Syndrome (PMS)

Endometriosis

Slipped Disk/Hernia

Complex Regional Pain Syndrome (CRPS)

Other Sort of Hernia

Speech Impediments 

Celiac Disease

Osteoporosis

Bulimia

Anorexia

Body Dysmorphia

[Feel free to add to the list, my friends! I know that’s not all.] 

It’s not “quirky,” it’s not “cute.”

None of this is endearing. 

If someone had the absolute audacity to come up to me and flirt and say something like my chronic migraine or my scoliosis or, heaven forbid, my body dysmorphia just makes me ‘so much more attractive,’ I would most likely see red and slap them. Same with ‘they could fix me.’ 

Do you expect us to say, “oh, Prince/Princess Charming, I thought the day would never come, now kiss me and banish my affliction!”

I have to laugh in order not to cry. 

½/21

To those suffering: I see you; I support you; I love you.

~Rosa ❤️

[iconicallychronic]

yo im selling this alpine sofa. starting price is 2400 bells inbox me if youre interested