Sinus Tachycardia

Feeling my inner mermaid but lost my sea legs can't go swimming for two weeks cause of heart monitor going to talk to cardiologist about cardiac ablation as I see they do it now for unresponsive to medications innappropriate sinus tachycardia upon my psych nurse suggestion anyone gone through this procedure advice/suggestions much appreciated#POTS #AutonomicDysfunction #CFS /ME

www.delicatelittlepetal.com

Hi Everyone

I'm excited to share my new project with you - writing about my new life with multiple chronic illnesses and invisible disability.

I feel like we frequently hear inspiring stories about people with illnesses or disabilities when they can pack their diagnoses into neat little boxes and when they have already overcome great challenges in their lives through hard work and a clear treatment plan. However, we rarely discuss the messy stage that precedes this, in which the person has to fight, sometimes for years, to have their symptoms taken seriously, to find treatments that work for them, and to contend with the impact that their disability has on their identity and relationships.

My hope is that through telling my story I can help others with complex health challenges feel less alone. Especially those who don’t yet have clear diagnoses, or those who feel that they don’t quite fit the label of disabled or chronically ill, despite significant physical or mental limitations.

It would mean so much to me if you would give it a read and let me know what you think! I welcome all respectful questions and comments.

P.S "delicate little petal" was my nickname growing up because of my extremely sensitive skin which was always covered in bruises and burst blood vessels!

#JointHypermobilitySyndrome #EhlersDanlosSyndrome #Fibromyalgia #Gastroparesis #TemporomandibularJointDisorders #Asthma #Anaphylaxis #MastCellActivationDisorder #PremenstrualDysphoricDisorder #Hypoadrenalism #Migraine #OrthostaticHypotension #SinusTachycardia

www.delicatelittlepetal.com

Hi Everyone

I'm excited to share my new project with you - writing about my new life with multiple chronic illnesses and invisible disability.

I feel like we frequently hear inspiring stories about people with illnesses or disabilities when they can pack their diagnoses into neat little boxes and when they have already overcome great challenges in their lives through hard work and a clear treatment plan. However, we rarely discuss the messy stage that precedes this, in which the person has to fight, sometimes for years, to have their symptoms taken seriously, to find treatments that work for them, and to contend with the impact that their disability has on their identity and relationships.

My hope is that through telling my story I can help others with complex health challenges feel less alone. Especially those who don’t yet have clear diagnoses, or those who feel that they don’t quite fit the label of disabled or chronically ill, despite significant physical or mental limitations.

It would mean so much to me if you would give it a read and let me know what you think! I welcome all respectful questions and comments.

P.S "delicate little petal" was my nickname growing up because of my extremely sensitive skin which was always covered in bruises and burst blood vessels!

#jointhypermobilitysyndrome #ehlersdanlossyndrome #fibromyalgia #gastroparesis #temporomandibularjointdisorders #asthma #anaphylaxis #mastcellactivationdisorder #premenstrualdysphoricdisorder #hypoadrenalism #Migraine #OrthostaticHypotension #SinusTachycardia

www.delicatelittlepetal.com

Hi Everyone

I'm excited to share my new project with you - writing about my new life with multiple chronic illnesses and invisible disability.

I feel like we frequently hear inspiring stories about people with illnesses or disabilities when they can pack their diagnoses into neat little boxes and when they have already overcome great challenges in their lives through hard work and a clear treatment plan. However, we rarely discuss the messy stage that precedes this, in which the person has to fight, sometimes for years, to have their symptoms taken seriously, to find treatments that work for them, and to contend with the impact that their disability has on their identity and relationships.

My hope is that through telling my story I can help others with complex health challenges feel less alone. Especially those who don’t yet have clear diagnoses, or those who feel that they don’t quite fit the label of disabled or chronically ill, despite significant physical or mental limitations.

It would mean so much to me it you would give it a read and let me know what you think! I welcome all respectful questions and comments.

P.S "delicate little petal" was my nickname growing up because of my extremely sensitive skin which was always covered in bruises and burst blood vessels!

#JointHypermobilitySyndrome #EhlersDanlosSyndrome #Fibromyalgia #Gastroparesis #TemporomandibularJointDisorders #Asthma #Anaphylaxis #MastCellActivationDisorder #PremenstrualDysphoricDisorder #Hypoadrenalism #OrthostaticHypotension #Migraine #SinusTachycardia

Hi Everyone

I'm excited to share a new project I've been working on - writing about my new life with multiple chronic illnesses and invisible disability.

I feel like we frequently hear inspiring stories about people with illnesses or disabilities when they can pack their diagnoses into neat little boxes and when they have already overcome great challenges in their lives through hard work and a clear treatment plan. However, we rarely discuss the messy stage that precedes this, in which the person has to fight, sometimes for years, to have their symptoms taken seriously, to find treatments that work for them, and to contend with the impact that their disability has on their identity and relationships.

My hope is that through telling my story I can help others with complex health challenges feel less alone. Especially those who don’t yet have clear diagnoses, or those who feel that they don’t quite fit the label of disabled or chronically ill, despite significant physical or mental limitations.

It would mean so much to me if you would give it a read and let me know what you think! I welcome all respectful questions and comments.

www.delicatelittlepetal.com

P.S "delicate little petal" was my nickname growing up because of my extremely sensitive skin which was always covered in bruises and burst blood vessels!

#JointHypermobilitySyndrome #EhlersDanlosSyndrome #Fibromyalgia #SinusTachycardia #OrthostaticHypotension #Migraine #TemporomandibularJointDisorders #Asthma #Anaphylaxis #MastCellActivationDisorder #Gastroparesis #PremenstrualDysphoricDisorder #Hypoadrenalism

I haven’t posted in quite sometime. After my dog Wilson died, I spiraled. I’m just coming out of it now, and will be starting a 14 month DBT program mid-March to really hone in on the skills. I think that will help!
Also, I struggled for about 6 years to get SSI even with my lawyers. I had another hearing scheduled for Jan. 19th, but on the 6th I believe, I got a call from my lawyers office saying that I won! The judge made an on record decision that I should get SSI- which I didn’t know they could do. I had been praying so hard about it.
Then another prayer was answered that same week. I had planned on maybe getting a chihuahua in the spring. My mom randomly called a breeder in Duluth who wasn’t even advertising puppies on her page. But she had one! We got him 5 days later. He’s everything I prayed for- he has a John Mulaney personality. He does have aggression issues so we are going to see a trainer. Other than that, I love him more everyday.
Then I was diagnosed with POTS (my cardiologist typed it in as Sinus Tachycardia since POTS carries stigma with it). I was put on meds that are helping a lot.
And then, but by no means least, we suspect I may be on the autism spectrum, something my mom has always thought I had. I found a few YouTube videos about women ASD and boy did I see myself in them. I sent the video to my mom, my therapist, and my soon to be DBT therapist. They all agreed it sounded like me.
I still have to message my psychiatrist about it and I have no idea how to get tested for it since autism in women is different than it is in guys. More updates to come.
So much has happened in such a short time. I’m still very ill, but now able to at least pay for most of my needs and Mulaney’s needs. It’s a wonderful feeling! #CheckInWithMe #Autism #POTS #MightyPets

I weigh 36 kgs.

I have, since as long as I can remember, struggled with dietary habits and weight issues, and can’t ever seem to understand why that’s the case.
Somehow, it just is.

On some occasions, I can go without eating for days. On other occasions, I subconsciously suppress my hunger, and sleep on it. And on the other hand, I can also eat like a pig! I never know what to expect, except the fact that I have no appetite.

My bones show up to one’s bare eye, with their edges and hard, solid cuts. Oddly enough, I’ve never been treated for an eating disorder, despite the fact that I check the entire list for it.

I haven’t weight more than 42 kgs all my life.