Unclassifiable autoimmune disease?
Four years ago my body started to develop antibodies. My health was chaotic. I had many hospitalizations to understand cause of this disorder.
4 years later I'm still at the same point. Unclassifiable autoimmune disease. To sum up, my body makes antibodies that attack my own body. But my doctors don't know what I'm really suffering. My condition is stable and I have symptomatic treatments, but I must remain surveillance and have regular monitoring to ensure the proper functioning of my organs. After having an official diagnosis for EDS I don't lose hope that someday doctors will find a name for my autoimmune disease. 🤞
Maladie auto-immune inclassable ?
Il y a 4 ans mon corps a commencé à développer des anticorps. Mon état de santé était chaotique. J'ai eu de nombreuses hospitalisations afin de comprendre la cause de ce dérèglement.
4 ans plus tard j'en suis toujours au même point. Maladie auto-immune inclassable. Pour résumer mon corps fabrique des anticorps qui attaque mon propre corps. Mais mes médecins ne savent pas de quoi je souffre réellement. Mon état est stable et j'ai des traitements symptomatiques, mais je dois rester sous surveillance et avoir un suivi régulier pour s'assurer du bon fonctionnement de mes organes. Après avoir eu un diagnostique officiel pour le SED, je ne perds pas espoir qu'un jour les médecins trouveront un nom à ma maladie auto-immune.
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Do III edycji Egurrola Challenge Wrocław pozostał już miesiąc, zatem nasze grupy rozpoczęły ostatni etap przygotowań do tego wspaniałego wydarzenia!💥 Nasi tancerze doskonale wiedzą, że wygląd sceniczny i widowiskowy strój to bardzo ważny element każdego występu!💃 Już 13 stycznia będziemy mogli podziwiać efekty ich przygotowań na wielkiej scenie w Sky Tower!♥️
“Forever is composed of NOWS.” This #MondayMotivation is a reminder for me that true #peace and stillness only really rests in the present moment. This is simple but not easy. We often slip into preoccupation with past regrets, future worries and uncertainty. Finding the now is a daily practice for me, most commonly involving simply focusing on the #breath. How do you find and appreciate the nows? #thewholecure
Clinic appointment in the middle of flu season? Mask the eff up!
It’s going to be a rather medical week (unlike last week which was a definite sleeping week). Asthma review today, mental health check in on Wednesday, and the long awaited neuro-GI on Thursday. Chronic illness is cutting into my doing-nothing schedule 😂
Review was fine, my asthma is generally well controlled. The only real issues I’ve had this year with it are related to allergies. More on that on Thursday. Also I really need to remember to ask the nurse to do the BP test before the peak flow - the exertion of the peak flow test means my BP was fluctuating wildly between high and low even when done 1 minute apart ! Asthma, meet autonomic dysfunction 🙈
Please join us for the Annual St. Cecilia Choir Performance and Middle School Art Sale tonight at 6pm in the Church of the Good Shepherd Parish Hall. All proceeds from original artwork sold in the sale will benefit the Empty Stocking Fund. See you there! #EDS#FoundationsforLife#EDSFineArts#MerryChristmas
I'm having a harder time thinking things through before I do them. I'm also having a harder time making up my own mind, i'm trying to create basically my own new default settings. Things that are simple that makes sense. Things that don't take a lot of brainpower. I'm having a very hard time excepting and living with the fact that my brain is malfunctioning, I don't like the idea that some of my actions that happen when I'm not in control create negative things for people I love. I hate that my health in general has so rapidly declined. It's like I'm watching myself decay. Like I can’t feel things emotionally. I just cry. #eds#malfunction#imtooyoungforthis#mentalhealth
Man my kid is cute! Lol😁🤣❤❤. I had lots of visitors this week. My aunt and her daughter came to visit at the start of the week and my sissy was here over the weekend. So great to see everyone, but I'm sad they are gone. My anxiety has been so bad. I never thought I would be able to have kids... especially after the miscarriage and all my problems with endometriosis and EDS. Now I have this beautiful baby boy and I'm so worried something terrible is going to happen to him at any moment. It's hard to get out of those thoughts but I'm trying.
Since giving birth and the epidural i have been dealing with a rash all over my back. I'm allergic to adhesive so I am sure that is the culprit but we are going on 4 weeks and it's still there so dermatologist tomorrow woo.
I hope everyone has a great week.
This post is not going to be inspiring and positive, but it is a true reflection of life right now. I have never felt so broken in my whole life. Physically, my body is a mess- I’m malnourished, dehydrated, sick and in pain constantly. But the mental pain is 100x worse. This illness has taken so much away from me. I never thought it could take my personality but right now I don’t recognise myself. I’ve just had to take a leave of absence from uni, which hurt so much. I know that I should really be in hospital now but I mentally can’t take another admission, so I’m desperately trying to hold out until I see my dietician on Wednesday. But that appointment is at the hospital I was admitted in and the thought of going back is terrifying- what has happened to me? I know these feelings will pass so I’m trying to just survive until they do. Sorry for a depressing post, but I need to show all aspects of my life for this account to be real. I also want to thank every single person who has messaged me- I may not be up to replying but each message has been read and mean so much to me, so thank you!
6 423 hours ago
I'm really struggling with my body pain, I've finished my osteopathy sessions after I've had 8 and had no improvement. Everything is just hurting and I'm struggling with getting food down me, the best way I can explain it is that after a few mouthfuls I'm in pain and it feels like the food isnt going into my stomach and is just sitting there in my esophagus, for example: If I have some cold water I can feel it moving/swishing as I move position at the bottom of the esophagus for a while. It also feels like a little longer for the food or water to actually go down my esophagus which makes me feel so sick, uncomfortable and makes eating exahsting and more of a chore than anything. I'm also struggling to pass stool without nearly going out of contiousness which is distressing and frustrating.
My mind and thoughts about further music education are abit messy too, but time will tell and hopefully it'll all work out for the best.
Keep on fighting, like all moments, this moment will come and pass. Nothing is perminant 💕
Guys! I’ve been diagnosed! A geneticist diagnosed me with Hypermobility type Ehlers Danlos Syndrome at the Mayo Clinic in AZ. I was also diagnosed with Mast Cell Activation Disorder and MALS. They agree with the POTS diagnosis, but the gastroparesis diagnosis and the NJ tube is on pause until I get surgery for MALS. Thank you to everyone that has supported me through prayer, kind words, and/or financially as well! Thank you for your help to make this diagnosis possible! Praise the Lord! #EDS#ehlersdanlossyndrome#diagnosed#pots#doggo#mayoclinic
Struggling with my short term memory has been the most frustrating aspect of my illness. Sometimes it’s funny to joke that I lose everything but I can’t tell you how scary it is to have no recollection of a part of your day. Not being able to remember names or that interesting thing you heard on the radio, or what you did earlier makes it difficult to have conversations with people. I used to be passionate about having in depth conversations about complex topics, but now I get embarrassed from forgetting what I was talking about midway through a thought. So just remember to be kind, you never know what battle someone is fighting. .
Hopefully as my conditions are better controlled my memory will improve (as it’s already gotten better from where it was a year ago) but in the meantime I’ve been working on adapting my life to be more functional. Lots of notes and most recently this phone case that is also a purse! After leaving my phone at a store for the millionth time I asked y’all if you had any suggestions and I’m so thankful to the people who recommended this! It’s already helped me so much! I love when this community helps each other 💕