Debra

@debraf
With many roles in life, I'm finding myself often overwhelmed. I have several complex and rare conditions and I'm often flooded with symptoms. I'm hoping to reach out to others who may have ideas about how to better cope with chronic illness.
Community Voices

Helping navigating site

I was going to a Mighty Chronic Illness support group that I believe was on Wednesday afternoons at 4:30pm. I used to get invites for it every week and I would sign up. They stopped coming and I cannot find postings for any meetings anywhere. Does the group still meet and if so, how do you get back in? Also, how do you find other group meetings? I have multiple autoimmune conditions. Thanks!!!!!!
#ChronicIllness #SupportGroups #AutoimmuneDisease

Community Voices

Antibody Potpourri Anyone? #MixedConnectiveTissueDiseaseMCTD

Gracious, 2022 is starting off with a bang. I was diagnosed with Myasthenia Gravis in January after reporting symptoms, and I told my doctors (Neurologist and Rheumatologist) of new symptoms progressing fast. A variety of symptoms that didnt seem related to any one thing but they’re there. After I got the Myasthenia Gravis diagnosis more of the labs came back and holy crap, it’s positive for Smith (Lupus), Ana Titer Pattern and Rheumatoid Arthritis.

After getting released from the hospital for the second time in 30 days for treatment of difficulty breathing swallowing and leg and arm weakness, my Neurologist and Rheumatologist referred me to a specialist and everyone is waiting on his test they assume he will do after our consultation which will be another 2 months out. As I’m waiting and reporting leg weakness that’s so bad despite the pyridostigme and prednisone I can’t stand or walk for more than 15 minutes tops, they’re telling me to relax. I ask how I’m supposed to get around, be a Mom and go to the zoo, be a wife and do dishes or cook, and they tell me to get someone to help me with it.

I understand the need for an accurate diagnosis before taking a big medication step like a big immunosuppressant, but am I being unreasonable by asking my Rheumatologist to at least look into the Mixed Connective Tissue Disease possibility in the interim? Because she’s holding off on everything entirely until the specialists nerve conduction test comes back.

1 person is talking about this
Community Voices

My Myasthenia Gravis symptoms & diagnosis

I was diagnosed about a month ago and it’s been surreal. I have fibromyalgia so the gradual increase in fatigue going upstairs over a month was dismissed. But after that month I was tired every single time I walked up 13 steps, even going very slowly. Then I’d get to the top of the steps and had to sit down before my legs gave out, literally. Every single time up the stairs, it didn’t matter if it was a trip once a day.

On top of that new weakness, I was having that same feeling standing doing dishes. My legs wouldn’t hold me up after just a few minutes.

You know when you’re in high school and you’re training for track & field (shotput and discus in my case) and you’re taking a weight and doing it until that muscle set won’t lift it any longer and it’s rubbery and shaky and won’t work right no matter how hard you try and you’re laughing because it’s funny at that age? That’s mine, in my legs, in my everything if I really push it.

My neurologist thought it was a long shot but tested me for myasthenia gravis by blood and nerve conduction test. Positive on both measures, this is definitely it. What was odd was my Ana, rheumatoid arthritis and smith blood tests came back positive too and those were all negative last year. (For those of you that don’t know, fibromyalgia is a constant barrage of trying to figure out what is a symptom of your fibro manifesting itself in some new fun way versus a symptom of autoimmune issues or cancer)

At that point the weakness was in my legs, and one day it was in my arms and I started to have trouble catching my breath. My doctor told me to go to the emergency room and that’s when I got more treatment. I also noticed my right eye was drooping a bit. I can’t raise my right eyebrow or get the right side of my smile to match perfectly but it’s not too bad. But for anybody wondering what it starts out like or feels like, that’s how mine did. #MyastheniaGravis

5 people are talking about this
Community Voices

Isolation w/ multiple challenges

Hi everyone, I don’t usually post. I just read because my experience is that I scare people off due to my multiple and challenging diagnoses. It’s like they don’t know how to talk to me like any regular person or maybe they think they might catch one of my non—communicable conditions or something. See a very short list in my hashtags. People I do speak with feel that all I talk about is medical stuff but when you ask how I am, how can I NOT bring it up? This is my life and my world is surrounded by medical considerations. And yes, I do other things that are life affirming and creative to stay afloat but the conversation never goes there. It’s like they only see and talk about medical and then blame me for it and excuse themselves from my life. So, I don’t know how to get my feelings out. There is a lot of grief left from the functioning life left behind. I need community but I really don’t even know where to start.

#Disability #myasthenia Gravis#Dysautonomia #Deafness #sjogren ’s Syndrome#mast cell activation disorder#CPTSD

15 people are talking about this
Community Voices

Isolation w/ multiple challenges

Hi everyone, I don’t usually post. I just read because my experience is that I scare people off due to my multiple and challenging diagnoses. It’s like they don’t know how to talk to me like any regular person or maybe they think they might catch one of my non—communicable conditions or something. See a very short list in my hashtags. People I do speak with feel that all I talk about is medical stuff but when you ask how I am, how can I NOT bring it up? This is my life and my world is surrounded by medical considerations. And yes, I do other things that are life affirming and creative to stay afloat but the conversation never goes there. It’s like they only see and talk about medical and then blame me for it and excuse themselves from my life. So, I don’t know how to get my feelings out. There is a lot of grief left from the functioning life left behind. I need community but I really don’t even know where to start.

#Disability #myasthenia Gravis#Dysautonomia #Deafness #sjogren ’s Syndrome#mast cell activation disorder#CPTSD

15 people are talking about this
Community Voices

What are your tips for taking terrible-tasting medicine?

<p>What are your tips for taking terrible-tasting medicine?</p>
19 people are talking about this
Community Voices

I’m not my conditions

I’m new here and I’m hoping to meet people who aren’t freaked out by someone with multiple conditions. I feel very isolated and try not to talk about medical things but since that is all I can really do at this time, it’s really challenging to just engage in small talk. I’d love to meet new friends!

18 people are talking about this
Community Voices

Isolation w/ multiple challenges

Hi everyone, I don’t usually post. I just read because my experience is that I scare people off due to my multiple and challenging diagnoses. It’s like they don’t know how to talk to me like any regular person or maybe they think they might catch one of my non—communicable conditions or something. See a very short list in my hashtags. People I do speak with feel that all I talk about is medical stuff but when you ask how I am, how can I NOT bring it up? This is my life and my world is surrounded by medical considerations. And yes, I do other things that are life affirming and creative to stay afloat but the conversation never goes there. It’s like they only see and talk about medical and then blame me for it and excuse themselves from my life. So, I don’t know how to get my feelings out. There is a lot of grief left from the functioning life left behind. I need community but I really don’t even know where to start.

#Disability #myasthenia Gravis#Dysautonomia #Deafness #sjogren ’s Syndrome#mast cell activation disorder#CPTSD

15 people are talking about this
Community Voices

Isolation w/ multiple challenges

Hi everyone, I don’t usually post. I just read because my experience is that I scare people off due to my multiple and challenging diagnoses. It’s like they don’t know how to talk to me like any regular person or maybe they think they might catch one of my non—communicable conditions or something. See a very short list in my hashtags. People I do speak with feel that all I talk about is medical stuff but when you ask how I am, how can I NOT bring it up? This is my life and my world is surrounded by medical considerations. And yes, I do other things that are life affirming and creative to stay afloat but the conversation never goes there. It’s like they only see and talk about medical and then blame me for it and excuse themselves from my life. So, I don’t know how to get my feelings out. There is a lot of grief left from the functioning life left behind. I need community but I really don’t even know where to start.

#Disability #myasthenia Gravis#Dysautonomia #Deafness #sjogren ’s Syndrome#mast cell activation disorder#CPTSD

15 people are talking about this
Community Voices

Isolation w/ multiple challenges

Hi everyone, I don’t usually post. I just read because my experience is that I scare people off due to my multiple and challenging diagnoses. It’s like they don’t know how to talk to me like any regular person or maybe they think they might catch one of my non—communicable conditions or something. See a very short list in my hashtags. People I do speak with feel that all I talk about is medical stuff but when you ask how I am, how can I NOT bring it up? This is my life and my world is surrounded by medical considerations. And yes, I do other things that are life affirming and creative to stay afloat but the conversation never goes there. It’s like they only see and talk about medical and then blame me for it and excuse themselves from my life. So, I don’t know how to get my feelings out. There is a lot of grief left from the functioning life left behind. I need community but I really don’t even know where to start.

#Disability #myasthenia Gravis#Dysautonomia #Deafness #sjogren ’s Syndrome#mast cell activation disorder#CPTSD

15 people are talking about this