My Journey With:

Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT or EDS 3) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Partial Complex Epilepsy ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar type I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission!) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias

Wednesday, November 16, 2016

30 Day Chronic Illness Challenge: Day 16

Day 16: What is your favorite inspirational quote?

30 Day Chronic Illness Challenge
30 Day Chronic Illness Challenge


"Some boys take a beautiful girl
And hide her away from the rest of the world
I want to be the one to walk in the sun
Oh girls they want to have fun
Oh girls just want to have [fun]"
~ Cyndi Lauper

"Tomorrow's another day
And I'm thirsty anyway
So bring on the rain"
~ Jo Dee Messina


"In a gentle way, you can shake the world." ~ Mahatma Gandhi


Tuesday, November 15, 2016

30 Day Chronic Illness Challenge: Day 15

Day 15: What would you say to people newly diagnosed with this illness?

30 Day Chronic Illness Challenge
30 Day Chronic Illness Challenge

My advice for anyone diagnosed with any illness is to learn everything you can about it, and develop a strong support system. Ideally, a strong support system would include family, friends, and medical professionals, though I know that's not always possible. Support groups like NAMI (National Alliance on Mental Illness) can be very helpful. Start with Google, and learn everything you can about your illness(es). Remember, that you probably won't have every single symptom listed, and you may have some that aren't listed, because they're more rare. Books on my many chronic illnesses have helped me tremendously. Facebook groups are a huge support. I use the Glow app and have support for many of my illnesses, especially PCOS, there. Below I'll list some of my favorite books about my illnesses.

Ehlers-Danlos Syndrome (EDS):

Dysautonomia:

Fibromyalgia:

Polycystic Ovarian Syndrome (PCOS):


Bipolar Disorder:



Monday, November 14, 2016

30 Day Chronic Illness Challenge: Day 14

Day 14: Give 5 things you are grateful for.

30 Day Chronic Illness Challenge
30 Day Chronic Illness Challenge



  1. The relationship I have with my parents.
  2. My two wonderful, wonderful cats.
  3. My DH, the love of my life.
  4. My cane and walker. My walker is awesome, it has a seat even!
  5. Having a roof over my head and food in my belly.

Saturday, November 5, 2016

30 Day Chronic Illness Challenge: Day 5

Day 5: How does being chronically ill make you feel?

30 Day Chronic Illness Challenge
30 Day Chronic Illness Challenge
Being chronically ill makes me feel scared, isolated, lonely, and unsure about the future. I don't know whether I'll end up in a wheelchair someday, or succumb to my depression. The future is a huge question. Being sick is lonely. I don't really know anyone in my town, but I have lots of friends online who are EDSers, POTSies, have fibromyalgia, etc. and they are a huge support to me. Even then, I sometimes just feel so lonely. Having a question mark in the future as to what my health will be like is unsettling, to say the least.

Friday, November 4, 2016

30 Day Chronic Illness Challenge: Day 4

Day 4: How have your friends and family reacted to it?


Growing up I was bullied badly because I confided in the wrong people that I was mentally ill. It was also obvious something about me was off, and my emotions and behaviors were erratic. The biggest mistake I made was confiding in someone. I always tried my best to downplay and hide my pain, though I got made fun of for smelling like Ben Gay all the time.

As an adult, people didn't take my pain seriously until I was completely disabled by it. My doctors still don't take it seriously enough. DH takes my pain, POTS, and mental health very seriously, which means a lot to me. Most of my social interaction is online, and I have found very supportive communities online that I depend on.

My parents always took my pain seriously. They finally accepted that my mental illness wasn't my fault, when they took a class offered by NAMI (National Alliance on Mental Illness). Before that they tried to understand, but I didn't even understand what was going on myself. NAMI saved my life.

These days I'm not around them, and I feel much safer, plus I always know DH is there to protect me.

Thursday, November 3, 2016

30 Day Chronic Illness Challenge: Day 3

Day 3: How did you get a diagnosis?


Since I have multiple diagnosis, I'm going to cover only a few: Ehlers-Danlos Syndrome (EDS), Postural Orthstatic Tachycardia Syndrome (POTS), Polycystic Ovarian Syndrome (PCOS), and Bipolar Disorder.

I have been in pain as long as I can remember. Some of my earliest memories are of crying and asking my dad why I hurt so much all of the time. My parents took me to doctors for years, and we kept getting the same run around. They all said that my labs were normal, so there couldn't possibly be anything wrong with me. I was diagnosed with fibromyalgia when I was fifteen. After that, any pain I ever complained of was automatically dismissed as being a part of fibromyalgia. My hip subluxed all the time, and I figured out how to get it back in myself. I didn't exactly know what was going on in the joint, I only knew what I had to do so I could walk again. That started around age fourteen. It wasn't until a rheumatologist commented that she'd never seen anyone so hypermobile that I even began to suspect EDS. I looked up hypermobile joints, which led me to looking up EDS. I read a lot about it, and watched many YouTube videos on it. I was pretty sure that's what I had, but my rheumatologist refused to send me to physical therapy or to even consider I might have EDS, since I can't touch my tongue to my nose. As a side note, quite a few EDSers can touch their tongue to their nose, but you don't have to be able to do so to get a diagnosis of EDS, and not all EDSers can do it. I went to another rheumatologist who said it didn't matter if I had it, as there is no cure, so he didn't think it was worth investigating. I finally convinced him to give me a referral to a geneticist. He was incredibly rude, so I didn't see that rheumy again. I then went to the geneticist, who talked down to me and was very rude. He said I had EDS or Hypermobility Syndrome, but it didn't matter which since it's uncurable. I got the notes from the appointment and throughout the report the doctor said things that never happened. He even said he spent well over an hour in the exam room with me, when it was actually only twenty minutes. Reading his notes about the appointment was strange, because it was like reading a piece of fiction someone put my name in. I then went to another rheumy, still looking for someone to take my EDS seriously. This doctor said he definitely thought I had EDS, but that he didn't feel qualified to care for such a complex patient. So, back to looking for another rheumy I went. The next one I found was in the same office of the rude doctor who sent me to an even ruder geneticist. She is the doctor I see now. She's actually a Physicians Assistant (PA) in rheumatology. I'm not happy with her, but I searched a long time for a doctor and I'm keeping her. I've been seeing her for years now. Meanwhile, I made an appointment in St. Louis with a very well known and new to the area geneticist at Children's Hospital, named Dr. W. She has done research in related areas, and EDS is one of her specialties. I had to fill out a huge stack of paperwork to send back before my appointment, which felt promising, as no other doctor had ever gone into so much depth. She was so nice! First I saw a genetic counselor, then Dr. W and the genetic counselor together, and then the genetic counselor again. She gave me the most thorough exam any doctor every had. She carefully inspected every joint, my skin, my scars, my eyes, the roof of my mouth, everything. I scored a 7/9 on the Beighton Score. I went back to my PA rheumy armed with information from Dr. W and pamplets from the Ehlers-Danlos National Foundation (EDNF), which is now The Ehlers-Danlos Society. I later got copies of my records from my PA rheumy, and she seemed quite annoyed that "the patient keeps giving me material on EDS." After that I stopped, though if you have a receptive doctor, I highly recommend printing off this page, as it's considered the "EDS Bible" on hypermobility type. (The same information on the Classic type is here, and here on the Vascular type.) These cover the basic genetics involved in EDS. I was diagnosed by Dr. W with the hypermobility type and as a spontaneous mutation, since I'm the first in my family to have it. My PA rheumy treats my EDS, and I see her once a year.

My POTS diagnosis was an ordeal as well. I first started suspecting POTS once my EDS diagnosis was confirmed and I began to show more and more symptoms of POTS. I scheduled an appointment with a cardiologist, and she scheduled an echocardiogram (an ultrasound of the heart), and the tilt table test. After the tests were completed, the technician said I was normal, so I didn't ever go back to get the results. A year later, when looking over the doctor records I'd ordered, I noticed that the cardiologist had put a note in my chart with the diagnosis of POTS. I had never gone back because the technician said everything looked normal. I shouldn't have done that, as she isn't properly trained to interpret the test, only to perform it. I went back to the cardiologist and she (and her supervisor) asked me all sorts of questions about EDS and what it was like to live with it, as they'd never met anyone with it. She told me she had no idea how to treat POTS, so her advice was "eat a heart healthy diet and call me if anything changes." It's gotten a lot worse since then, but I no longer have faith that I can find a doctor competent enough to treat me.

Since I went through puberty two things were wrong: I became extremely depressed, and my hormones seemed out of control. My mom and dad tried everything to make me "snap out of it" or "pull myself up by my bootstraps." They finally took me to therapy after three years of depression. I was diagnosed with Major Depression and given Paxil. My psychiatrist warned to "watch for manic depression," but we didn't know what manic depression even was. By age fifteen I'd had three stays in a psychiatric hospital. For years doctors couldn't decide what was going on, and my hormonal issues were passed off as being part of my mental illness. It wasn't until I was nineteen and in a severe manic episode, that I was diagnosed with bipolar disorder. If I'd been properly treated from the time it showed up at age ten maybe I wouldn't be disabled from the bipolar, but that didn't happen, and my bipolar limits my life and makes demands on me that are too disabling for me to live a normal life. Still, I knew I also had a hormonal problem. I kept going to doctors, telling them I knew it wasn't normal to sometimes go months with no period, but they kept brushing off my concerns as no big deal. It wasn't until I moved here when I met DH that I demanded to see an ob/gyn to test my hormones. I got in to see the ob/gyn I have today, and he tested my hormones and did an internal ultrasound of my ovaries. They were covered in the tiny pearl-like cysts that so often (though not always) come with PCOS. 

I have had a horrible problem finding doctors that care, but I do have a caring ob/gyn and endocrinologist, and I'm happy about that. 

Wednesday, November 2, 2016

30 Day Chronic Illness Challenge: Day 2

30 Day Chronic Illness Challenge

Day 2: How have these illnesses affected your life?

30 Day Chronic Illness Challenge
30 Day Chronic Illness Challenge

This is a huge question. When it comes down to how my chronic illnesses have effected my life, it's impossible to compare the effects on one illness from the other. The effects of mental illnesses can't be separated from the effects of my physical illnesses, as both effect the whole body, including the brain.

During a normal day my mobility is greatly limited by my pain, dizziness, fatigue, and weakness. Well over half the time I use a cane to get around my house, and a small portion of the time I use a wheelchair that DH has to push. Because my wrists are weak and the ligaments are loose, I can't push myself. Taking a shower is an ordeal, so I only shower every other day. I use a shower chair, and can't take a hot shower or I'll pass out. Just standing up in the shower from my chair can be dangerous and cause me to pass out, especially if the water is warm or hot. Holding my arms above my head to shampoo my hair is painful and makes me dizzy.

In the morning sometimes it can take me two hours to finish my morning routine of washing my face, dressing, putting on my braces/splints, moisturizing my very dry skin, and taking my meds. I'm supposed to do my lightbox every morning as well, though I am bad at forgetting it. Both "brain fog" and side effects from my meds make it hard to remember doing things. I makes lists of lists, and I'm serious about that. It's the only way I can remember to do things that I would otherwise forget to do.

Most mornings I can't stand up in the bathroom long enough to wear makeup even if I wanted to, so on days I wear makeup I usually put it on in the afternoon. By then the muscle stiffness and morning muscle spasms have either gotten better or gotten a lot worse, in which case I wouldn't be able to wear any makeup. I got a lighted mirror sent to me for review on a different website, I'll see if that helps me be able to do my makeup in the living room where I can be seated, instead of standing in the bathroom.

I have a hard time cooking or baking, as I can't stand long or stay in any position for very long. I can't drive because I can't hold my hands up on the wheel, or push the gas or break pedals without a lot of pain. This is depressing, as it takes away my independence and puts more stress on DH.

On days I'm depressed I can't really do much of anything. I don't even want to exist when I'm very depressed. Meanwhile, if I'm manic it seems like I'm purposely trying to destroy my life. Anxiety is always there, caused by both dysautonomia (my autonomic nervous system is messed up), suffering chronic and unrelenting pain, and mental illness.

My life is effected in every aspect by my chronic illnesses. 

Tuesday, November 1, 2016

30 Day Chronic Illness Challenge: Day 1

I created part of the 30 Day Chronic Illness Challenge to do for Survivor during the month of November 2016, and parts I found on the internet. Any blogger may also do the challenge. So, let's start, and here's the challenge!


30 Day Chronic Illness Challenge
30 Day Chronic Illness Challenge


30 Day Chronic Illness Challenge

Day 1: Introduce yourself. What illnesses do you have? How long have you had them?

Day 2: How have these illnesses affected your life?

Day 3: How did you get a diagnosis?

Day 4: How have your friends and family reacted to it?

Day 5: How does being chronically ill make you feel?

Day 6: If you could have told yourself something when you first remember these symptoms arising, what would you have said?

Day 7: What was the biggest realization you have had?

Day 8: Where do you see yourself in 5 years time?

Day 9: Have you ever tried any alternative therapies? If so, what? Did they work?

Day 10: What little things makes your life easier?

Day 11: Why do you believe you have this illness? Bad luck, a higher power, karma, or something else?

Day 12: Briefly explain to a healthy person what it is like to live with this illness.

Day 13: Has your physical illness had any effect on your mental health? Explain.

Day 14: Give 5 things you are grateful for.

Day 15: What would you say to people newly diagnosed with this illness?

Day 16: What is your favorite inspirational quote?

Day 17: How would things be different if you weren't ill?

Day 18: Do you think you have become a better person through being ill? Explain.

Day 19: How do you feel about the future?

Day 20: Have you met anyone with the same illness? Did it help?

Day 21: What networks or websites have you used for support or information about your illness?

Day 22: How do you feel about how you have been treated by the medical system? Explain.

Day 23: What do you say to yourself when you need a pep talk?

Day 24: Do you use mobility aids? If so, what?

Day 25: What would make life easier for you if society were more disabled inclusive?

Day 26: Does medication help your health? How do you deal with side effects?

Day 27: How do you respond to the question "How are you?" when you aren't doing well?

Day 28: Are certain times of year harder on your health than others?

Day 29: How do you feel about

Day 30: Post pictures of you during good and bad times with your illnesses. Do you think other people can tell when your health is bad? Does that matter to you?

Spoonie
Spoonie


Day 1: Introduce yourself. What illnesses do you have? How long have you had them?

My name is Amy and I live with DH and our two cats, Niki and Katya. I have multiple chronic illnesses, both physical and mental. I enjoy scrapbooking, collecting postcards, reading, writing, blogging, studying world religions, crocheting (though I'm not very good at it), cross-stitch, and am learning to work with polymer clay. I hope to someday learn Italian. I want to be a Mommy someday, and I think DH would make a great Daddy.

Ehlers-Danlos Syndrome Hypermobility Type (EDS-H or EDS 3)
Age of onset: birth
Age of diagnosis: 29

Postural Orthostatic Tachycardia Syndrome (POTS)
Age of onset: teenager
Age of diagnosis: 30

Partial Complex Epilepsy
Age of onset: unknown, doctors theorize since childhood
Age of diagnosis: 27

Fibromyalgia
Age of onset: childhood
Age of diagnosis: 15

Chronic Myofascial Pain (CMP)
Age of onset: childhood
Age of diagnosis: 29

Polycystic Ovarian Syndrome (PCOS)
Age of onset: puberty
Age of diagnosis: 28

Temporomandibular Joint Dysfunction (TMJ Dysfunction)
Age of onset: childhood
Age of diagnosis: 13

Bipolar type I Rapid Cycling With Psychosis
Age of onset: 10
Age of diagnosis: 19

Migraines
Age of onset: 23
Age of diagnosis: 27

Obsessive Compulsive Disorder (OCD)
Age of onset: 4
Age of diagnosis: 15
Age of remission: 28

Complex-Post-Traumatic Stress Disorder (C-PTSD)
Age of onset: childhood
Age of diagnosis: diagnosis of PTSD, diagnosis of C-PTSD at age 29

Panic Disorder
Age of onset: teenager
Age of diagnosis: 32

Generalized Anxiety Disorder (GAD)
Age of onset: teenager
Age of diagnosis: 25

Social Anxiety Disorder (SAD)
Age of onset: 4
Age of diagnosis: 33

Hashimotos Thyroiditis
Age of onset: 23
Age of diagnosis: 23

Seasonal Affective Disorder (SAD)
Age of onset: 10
Age of diagnosis: 20

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