I recently went to Stanford and I was all positive except the IVIG treatment makes me so sick, but I thought Typical check up, plan the rest of my treatment plan than happy du da day! Well I got to the Autonomic clinic and I see my Dr and I said only 6 more months and I cured right? He looks at me says “No” This IVIG is not treatment for your disease its for the rare antibody we found. There is no cure. I was speechless. I thought that’s what the treatment was for, “No” It was only for the antibody. So I sad there he did a exam and I have definitely gotten worse. Every thing I asked I got the same response, Its part of the disease. So I don’t know what made me come out and ask but I asked “am I going to die?” He said not from this disease, but Kelly you are so rare your disease is so new but Washington Research Institute is doing a lot of studies and a cure can be around the corner, But this disease won’t kill you, we just need to treat the symptoms and keep you comfortable, I didn’t like that response. So I said is there anything I can try? Yes, but there are no study’s that it does or does not work, And you can loose your kidney and liver in the process. I asked would you do it, He looked at me and said “No” I said that means this entire time I am been sicker than a dog for a week every month was for a antibody, yes he said and there is no study that this IVIG is going to do anything for it. So this entire time, I am going through hell only to think It was to make me better and No one has been on my dose, for the length of time that I have been on it. He said I am it??? Yes, I said well do we stop the IVIG, He said no the study from Washington Research Center wants you to finish up to your year mark, do more biopsies see if the antibody is gone, but either way its not a cure so why? Research for other patients, He said you can opt out, I thought to myself I never would have opted in if I knew I was the first. So we will cut it own from 5 days to 3 because days 4 and 5 kill me. So that’s the first appointment. Now I get to see the GI Doctor who basically tells me any of the medications I could get could hurt me more than help me, but would you like to see a nutritionist, For what purpose I ask, I can’t eat, well she can tell you what foods to avoid, I said well It’s easier to say what I can eat, nothing but protein shakes. Well puree your food, I said you don’t understand it hurts to eat whether its a pureed taco, it’ still going to hurt. So she asked if I wanted to have Botox injected down my esophagus, I said isn’t that a little close to my lungs my heart, my swallowing function, yes you would be very risky, ok next option, injections all around my rig cage for the pain from vomiting, ok but that’s temporary, Yes, There is a surgery of putting a pace maker in your stomach but most people don’t like it and you can for sure see it an feel it, okay, what about my Hiatal Hernia, no we don’t want to fix it unless absolutely necessary but we could cut the opening to your stomach to make it easier for food to go down, I was thinking well if you want to cut my stomach opening why wouldn’t you fix the hernia oh because it is not necessary. Oh and Kelly we are moving out of this building and going to redwood city an Emeryville by UC Berkley, So I asked what am I actually following up with you for, doesn’t seem like you want to do anything for me, well you if loose any more weight, As your doctor you would have to have a feeding tube or g button for TPN feedings, I said wait a minute no one seems to care that I have lost so much weight and your response is it’s your Dr’s responsibility to make sure your getting nutrition. So I have to watch you closer so triple up on the protein shakes because I do not want to see you go any lower because that will cause other problems. So What do you say to all that oh and by the way I’m 12 weeks pregnant so I need to get you in after we move and before I take my leave of absence. Yet not one blood test. nothing to check my kidneys from IVIG treatment, just see you soon. I left speechless! Imagine that Speechless. So I had a heavy heart the entire way home. But I will not let this disease define me or take me, I will fight it with all my stubbornness that God gave me and still continue my purpose. I have no control over any of this, I can try to lower stress, I can eat my protein shakes, by the way Costco’s protein shakes taste Nasty. So I sit in the world of I have no plan just keep me on IVIG until December, then its keeping me comfortable. Watch my stress and don’t push to much, listen to my body. Rest when my body says rest. Stay close to those I love and help people with invisible illness get through there journey. That’s all I can do. The left is up to the man upstairs.
A request from your chronically ill friend: what I need when we talk about my sickness.
When I meet new people, I often struggle to explain what I need. This is it.
When I was 14, I woke up with a fat face.
I was sick with a fever higher than I had ever felt. My face felt like a sumo wrestler had crammed a cantaloupe into my ear.
My mom took me to the emergency room in the closest town to our family’s remote lake house in North Carolina. Receptionists shooed me in, nurses injected butt shots, and doctors gave me doe-eyed stares. They had no idea what was wrong with me.
This routine of waking up suddenly sick, with a fat face and a spiked fever, continued for years.
Finally, when I was 16, doctors handed me a diagnosis and a pill regimen and told me I might be sick forever.
I was young enough that my pediatric doctor called to give my mom the diagnosis over the phone. The most dramatic part happened before the diagnosis, though, when they told my mom that they had somehow lost my eight vials of blood (which had taken hours of sweat and tears and people holding me down to get). Otherwise, the phone call was short and I could hear the words through the phone my mom held up to her ear.
“I’m so sorry,” the pediatric doctor said to my mom. As if we knew anything about an autoimmune disorder called Sjögren’s syndrome, with hallmark symptoms of dry eyes and a dry mouth, and why we should possibly join the doctor in feeling sad.
Now, more than 10 years later, I’m living fairly well with this autoimmune disorder.
But still, when I meet new people, I struggle with how to explain what I need. Part of my introduction to new people has to include these words: “I’m sick.” And that’s not easy.
So hello, new friend. Here’s what I need you to try to understand when we talk about my life with a chronic illness:
1. I need you to let me have my green couch moments.
After that first day at the hospital in North Carolina, they sent me home without answers and I slept on the green couch at my family’s lake house for days. I remember feeling sad, watching my cousins jump off the diving board at the end of the dock.
But I mostly remember feeling sad about how my family looked at me. They all had the saddest eyes, like they knew something about my future that I couldn’t comprehend at the age of 14.
For some reason, I’ve continued to have a lot of different green couches over the years in various houses and apartments. Sometimes when my sickness takes over, I have to spend days — or weeks — recovering on my green couch. I need you to let me stay there to rest and wait for Netflix to ask me, “Are you still watching ‘Friends’?”
2. I need you to show up.
No one knows what tomorrow holds. But if my tomorrow puts me in the hospital, I need you to come. I need you to show up. Sure, you can bring me flowers, but I really just need you to be there at my bedside, hanging out.
In high school, when my hospital visits lasted for 12 or 14 days of sucking on lemons in the pediatric wing to trigger my salivary glands and going for walks wheeling my IV bag, I remember the friends who showed up. And I remember the friends who only came after my parents bribed them to sit with me for a couple hours so they could go home to shower.
People were afraid. I get it. I was afraid, too.
3. I need you to stop asking why doctors can’t fix me.
The autoimmune disorder that I have is chronic, meaning there isn’t a cure, just like many other people in the world with chronic illnesses. I know it’s confusing — you come down with a cough and you go to the doctor to get better.
For me, it’s not that simple. I take a couple of medications that help tackle my individual symptoms and improve my quality of life with pain management, but that’s it. That’s all doctors can do at this point.
Please stop asking why. Doctors don’t know. I don’t know.
4. I need you to try to see my invisible pain.
All those years when I woke up with a fat face were just my invisible illness trying to make a guest appearance for one episode. Mostly, my body suffers in ways that you can’t see.
The more visible symptoms happen in cold weather when the blood rushes away from my hands and feet. This is when you watch in amazement because my white hands look like a dead person’s. I need you to know that the invisible pain hurts just as bad as the visible pain.
5. I need you to stop asking me how I feel today.
Some days, it’s a big deal to just get out of bed because my joints ache and after even 10 hours of sleep, I still feel like I have a hangover. My right foot and my back feel broken, and my dry eyes build a white film on my contacts that feels like I’m watching the world through a dirty fish bowl.
When you ask me how I feel today, the answer is complicated. The list of pain that’s both inflamed or subsided is longer than we need to hash out. And sometimes the answer to your questions makes me sad, grieving the loss of a dream of a pain-free life I think I deserve.
6. I need you to let me weep in my mom’s arms, even as a grown adult.
Next month, I turn 27. Recently, I wept in my mom’s arms in a shaking way that startled even me. It was the day I got another doctor’s bill for hundreds that I couldn’t afford, and I wasn’t sure if I could even go to my specialist appointment because it might mean I couldn’t pay rent or buy groceries for a couple of months.
My health insurance doesn’t get it. They cover so little, deeming appointments and blood work as “medically unnecessary.” But truthfully, nothing about this sick life is easy to handle, even as a pretty independent adult. I need you to let me weep from the deepest places and not tell me to just shake it off.
7. I need you to stop telling me I can’t.
I told my parents I wanted to go on a mission trip to Africa. Instantly, they said, “You can’t.”
I’ve heard these words before, about studying abroad or becoming an elementary school teacher, with planes and buildings and countries with germs lurking behind every corner. Their advice comes from places of love. But I can’t have you joining in on this whole “You can’t” chant.
Until a doctor gives a definite “No, you can’t do that or go there,” then I need you to invite me to go places. I need you to challenge me and dream with me.
8. I need you to let me be stubborn.
I have a cousin who’s searching for a diagnosis for something autoimmune right now. My biggest prayer for her is that she stays stubborn, even after she knows she’s sick. She studied abroad before she got sick, before anyone tried to tell her she can’t.
The last couple of years, I moved to a new time zone, even when some told me I couldn’t. You might get to know me now and want to protect me in a plastic bubble everywhere we go. Please don’t. If you’re planning a trip somewhere exotic, invite me. I’ll tell you if it’s too much.
Let me wrestle in the dark with my own stubbornness, just like when I was a little girl and insisted on riding my new bike with shiny tassels on the very first night, even though it was too big and pitch dark outside. I might fall down and get hurt, but I promise you I’ll learn from stubbornly ditching the training wheels in the dark.
9. I need you to tell me to stop staring at that hospital waiting in the sky.
I live in Dallas with a clear view to Baylor hospital in the skyline. Sometimes, while I’ve sat by the pool at my apartment, I’ve caught myself staring for too long at the hospital waiting in the sky for my future arrival.
You might be familiar with how we tell the “sick narrative”: sick, sicker, dying, gone. I have a higher risk of lymphoma and other complications, but this doesn’t mean that’s definitely how my story will end.
So if you catch me anxiously staring at my scripted future, stop me. I need you to remind me that the story can twist in so many directions, especially with technology and modern medicine that completely shatter traditional death sentences.
10. I need you to let me change the world today. Now.
The best (and worst) part about being sick: It moves me into action. I don’t have time to wait. I probably quit jobs sooner than you would or chase after dreams in frantic ways while you put yours on the back burner. I also don’t have time to waste.
It’s scary and exciting all wrapped into one. I need you to help me figure out how little me plays a part in this big story. Let me fight for things that matter today because tomorrow is just a gift.
11. I need you to love me like the 80-year-old grandma I am.
I’ve finally found a pill box that fits all the vitamins and medications that I need to sort out for designated times each day. My dream night is one cozied up and warm on the couch, followed by a 9:30 bedtime. Sjögren’s means I don’t produce enough tears, but if I did, I would cry while laughing at how many times I have to go to the bathroom because of all the water I have to drink to stay hydrated.
Yes, me and your 80-year-old grandma probably have more in common than you and I do. I’ve completely accepted this fact. Especially since I’ve been 80 since I was 16.
So love me like a grandma! Stop inviting me out to all-nighters and saying it’s so funny how I go to bed early and love warm socks. It’s not funny or cute. It’s who I am.
My autoimmune disorder is in no way categorized as “the worst.”
Believe me, people suffer every day with far worse, much more incurable diseases than mine. Some days, my illness feels mostly annoying, like an accessory I carry around and must remember to bring with me when I leave the house.
But I hope you will one day meet one of my best friends, a woman who has learned to love me and my sickness. She remembers little details, like how I lack the saliva required to eat dry pretzels filled with dry peanut butter. She figures out how to eat each pretzel with a huge swig of water so I won’t choke, and she does it with me, too. Together, we laugh.
She sits with me on the green couch for Netflix marathons when I’m sick. And together, we cry.
That’s what I want, what I need, and what I want you to know about me, friend: We all have our stuff, and this is mine.
I thought Ashley’s story was exactly what we all wish we could say to family and friends, I wanted to state a few extra things I would like to add to this article.
Stop telling me to stop trying to find a cure! I am not going to just take this laying down. I need to research for my own sanity, start a support group, start a blog, to keep me busy and active with my brain.
Stop telling me a new treatment you heard of from a friend of a friend that you know will cure me. Including coffee enemas. or some crazy diet or pyramid business that supplements will cure me.
Stop telling me to stop Gluten, been there done that.
Stop judging how I should feel on certain days because it may interrupt our plans.
Stop saying you will help out when needed and never come by.
Stop telling me to not be sad, or depressed with my diagnosis. Some days, I just can’t be positive.
Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadedness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.
Doctors aren’t sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS. Current thinking is that there are a number of mechanisms. Some individuals have peripheral denervation (neuropathic POTS); some have symptoms that are due to sustained or parosyxmal overactivity of the sympathetic nervous system (hyperadrenergic POTS); and many individuals with POTS have significant deconditioning.
Is there any treatment?
Therapies for POTS are targeted at relieving low blood volume or regulating circulatory problems that could be causing the disorder. No single treatment has been found to be effect for all. A number of drugs seem to be effective in the short term. Whether they help in long term is uncertain. Simple interventions such as adding extra salt to the diet and attention to adequate fluid intake are often effective. The drugs fludrocortisone (for those on a high salt diet) and midodrine in low doses are often used to increase blood volume and narrow blood vessels. Drinking 16 ounces of water (2 glassfuls) before getting up can also help raise blood pressure. Some individuals are helped by beta receptor blocking agents. There is some evidence that an exercise program can gradually improve orthostatic tolerance.
What is the prognosis?
POTS may follow a relapsing-remitting course, in which symptoms come and go, for years. In most cases (approximately 80 percent), an individual with POTS improves to some degree and becomes functional, although some residual symptoms are common.
What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS) and other Institutes of the National Institutes of Health (NIH) conduct research related to POTS and support additional research through grants to major research institutions across the country. Much of this research focuses on finding better ways to prevent, treat, and ultimately cure disorders such as POTS. NINDS-funded researchers are investigating if low levels of the hormone aldosterone contribute to low blood volume in individuals with POTS, and if high levels of angiotensin II, a peptide that helps regulate blood volume, leads to decreased adrenal sensitivity. Other NINDS-funded research is investigating the hypothesis that POTS is a syndrome of different subtypes, with different underlying mechanisms. Additionally, the NINDS funds the Autonomic Rare Diseases Consortium to further understand disorders such as orthostatic hypotension and hopefully alter the course of disease.
NIH Patient Recruitment for Postural Tachycardia Syndrome Clinical Trials
|National Dysautonomia Research Foundation
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|Dysautonomia Youth Network of America, Inc.
1301 Greengate Court
Waldorf, MD 20601
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NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
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Last Modified December 2, 2015