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The Most Disturbing Symptom of My Dysautonomia

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There are a lot of things I hate about having dysautonomia. The dizziness, the lightheadedness, the tachycardia, the salt, the fluids, the compression socks (even though mine are cute), the occasional need for a wheelchair in public that makes people question me because sometimes I can walk and sometimes I can’t (many people don’t understand invisible disabilities.) But one of the main things I hate about dysautonomia is part of the reason I have been writing less and less as time goes on, and why what I have written hasn’t exactly been stellar.

Brain fog.

This is not just a getting-older-I-forgot-where-I-put-my-keys kind of thing. I am not normally a forgetful person. I remember things I have no business remembering (ask my childhood friends).

 

What I’m talking about is actually quite disturbing to me.

Brain fog in dysautonomia, specifically POTS, is likely caused by the physiological decreases in cardiac output and cerebral blood flow that occur in the upright position in patients with this disorder. (And remember, we already know my cardiac output decreases in an upright position thanks to my hemodynamic test.) Patients often describe symptoms of lightheadedness, impaired awareness, mental fatigue and cognitive deficits. Interestingly however, symptoms are not typically relieved when the patient returns to a supine (laying down) position. I thought I knew what brain fog was, but now I realize I was completely missing the picture before.

Now, whenever I have a thought about something, I need to act on it or write it down within about 30 seconds, or I will forget it. This is the one that happens most frequently out of all my brain fog manifestations. When I got the idea for this post, I had to immediately create a draft with a title telling me what I wanted to write about to remind me I even had the idea in the first place. When I was just searching for a sticker to put in my planner to remind me to do something, I was searching for the sticker, searching for the sticker…and then suddenly could no longer remember what it was I wanted to put in the planner to remember. Aaaand it just happened again with a different idea: I get an idea. I look for a sticker. But as I’m looking for the sticker, I forget what the idea was and therefore what kind of sticker I’m looking for. There’s that 30-second rule again…

I have trouble remembering what things are called. Last week I called a pickle jar “the thing that the pickles are in” because I couldn’t remember the word “jar.” And this wasn’t just a “brain fart;” I literally could not remember the word.

I have trouble spelling words. I was writing in my journal a little while ago and it took me a good five seconds to remember how to spell “where.”

I forget if I’ve taken prn (as needed) medications, like an antiemetic or painkillers. So if my symptoms don’t go away, I don’t know whether it’s because I thought I took the pills and I didn’t, or if they just didn’t work. So I’ll usually end up struggling for a few hours longer because some of this stuff you can’t safely double dose. I may need to go back to writing down every time I take something, if I can remember to write it down in the first place.

This one isn’t as big a deal, but I forget to respond to emails and comments on my blog, Facebook, Instagram, etc. Please don’t hate me if I don’t respond; I may have just forgotten.

These things may not sound like a big deal to some of you. I know you may be thinking, “Oh, I forget things all the time.” But this is different. I would sometimes forget things in the past, too; it’s a pretty common occurrence for anyone in general.

But. This. Is. Different.

I can’t adequately express how frightening some of these things are when they happen. Occasionally misspelling a word, OK. It’s more of a fluke than anything, just rushing as you’re writing and your brain mixes the letters up. But how often when you’re writing do you actually forget how to spell something you’ve known how to spell since at least kindergarten? My brain doesn’t normally forget. So forgetting ideas I had? Word-finding difficulties? Forgetting how to spell? Forgetting if I took medications? This is not characteristic of me at all. And I really don’t like this new version of me.

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Thinkstock photo via Cattallina.

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What I Hope to Teach My Child as a Parent With Dysautonomia

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Every day people preach about the obstacles you will face as a parent. Every day stories are swapped comparing parenting battles won and lost. But often what is overlooked and misunderstood is parenting with a chronic illness. When your day consists of barely being able to get out of bed from overwhelming fatigue, forcing yourself to take medications that do nothing and the isolation that comes along with your illness, how do you care for someone else – let alone yourself? How do you keep up with a 4-year-old energizer bunny who seems to have discovered a hidden Red Bull stash you had no idea even existed?

Parenting with a chronic illness is complex and filled with trial and a lot of errors. Parenting with a chronic illness oftentimes is a team effort and in order to survive, you throw it all in the air and cross your fingers that your team has your back. Every day I wake up hoping for a good day and lie in bed Googling magic cures when it doesn’t happen, all while a curious 4-year-old with a million questions observes eagerly and persistently.

“Mommy, are you having a good day?” “Mommy, when your doctor fixes you can we drive and go eat pizza because you will be better?” All the while, I know this is possibly my new forever – living with a chronic illness – yet I don’t have the heart to tell her, so instead I put on a smile and tell her how much I look forward to all of her ideas and adventures.

Through my illness, my little princess has learned empathy and true care for the well-being of people that many adults will never have or be able to understand. As a parent with a chronic illness, I find myself feeling so discouraged in what I am not doing that other parents are that it is hard at times to remember all the good that comes from parenting with a chronic illness. Things such as the maturity kids with ill parents develop, the empathy and compassion they exhibit, the strength we teach them each and every day through our battle and the ambition, willingness and responsibility they show in wanting to help take care of things to make our life easier and better.

It is so easy when we are ill to get down on ourselves and feel like we are less-than-par parents, when in a reality we are doing the best we can with the hand we have been dealt. We embrace the good days and live them to the fullest while surviving the bad ones with a little help from the amazing kids being raised dealing with chronic illness! And they truly are nothing less than amazing!

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Thinkstock photo via Choreograph.

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To the Parts of Me That Existed Before Dysautonomia

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To the parts of me dysautonomia took,

Hey. It’s me.

It’s been a while, I know. I’m sorry. Sometimes it’s easier to pretend you never existed at all than to admit you were once the best part of me and now you’re gone. I know you’re out there somewhere, and I hope you miss me too.

Sometimes I think about how we used to laugh, so obnoxiously unhindered. It was beautiful. Maybe not to the silences it broke through or the ears it landed on, but to me it was beautiful. That laugh didn’t know any pain. It knew no discomfort or fear or weakness. It knew no boundaries.

I think about the way we used to dance. We’d throw our legs all around, not knowing that those very same legs would never move that way again. We used to spin and not feel faint. We jumped without consideration for whether or not our legs would catch us. We just knew they would. They don’t anymore. Not the way they used to.

I remember how easy breathing used to be. Do you remember? The way we used to take in air like it was nothing. We did everything like it was nothing, and back then maybe it was. All I know is I’d give anything to have you back.

You were so innocent. You were made of pure gold and sunshine and everything good in the world. You’d never seen something so ugly until the day you met dysautonomia.

I know you didn’t want to go. I know you didn’t choose this. You fought so hard for so long. You just couldn’t win. It’s not your fault.

Bits and pieces of you come back to me sometimes though. Every once in a while I see you. Usually in the morning, when I first open my eyes and I forget about everything. You’re there, begging me to get out of bed and come be with you again. So I do. I get up. And by moving I realize you were never really back for me – you were just a daydream.

I lied before when I said I spend more time pretending you were never here than I do admitting to myself that you’re just gone. I spend most of my time thinking of you. I wonder if maybe you’ll come back someday so that maybe my future husband will know you, and maybe my future kids will too.

I wish you could come back, but you just can’t. I’m a new person now. I’m 18 years old now, and you’re somewhere trapped in 13 years old where I had to leave you behind.

Don’t worry, though. On good days I still laugh loudly. I still dance and breath and survive. I still live. It’s just different now, you know? That’s OK though, because despite all that dysautonomia stole from me, I still found a way to be happy. I still found a way to close my eyes at night and have good dreams. I found a way to believe that somehow, someway, I’ll learn how to bring you back.

Somehow, someway.

To the parts of me dysautonomia took, I miss you, but I’m doing OK without you.

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Thinkstock photo via evgenyatamanenko.

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To the Mother of a Girl With a Chronic Illness

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To the mother of a girl with a chronic illness,

First of all, here’s to you. You’ve got one of the toughest jobs out there, and you’re the only one qualified for the job.

If you’re anything like my mom, you don’t really know what you’re doing. You’re caught between wanting to breathe in every moment of what’s happening to her, in the hopes that by being able to regurgitate every excruciating detail to a doctor, you’ll be given a better answer than just “This won’t ever go away.” You want to run and hide and pray that this wasn’t really happening to the child you carried in your womb – the child you created.

If you’re anything like my mom, though, you never run and hide. You can’t. It’s not in your nature.

My mom is a fixer. All she ever wanted to do was fix things. She wanted to fix the broken wood on the fence where my brother lost aim with a lacrosse ball. She wanted to fix the left side of the stove that stopped working. She just wanted to fix things. She wanted to fix me up, make me new, and even when she knew she couldn’t, she never stopped crying. It was sad. She was my mom and moms are supposed to dry tears and kiss scraped knees and be super human. Moms are supposed to fix things, and chronic illness is un-fixable.

I hated that. Not for me, but for her.

I was diagnosed with dysautonomia when I was 17. Before the diagnosis, dysautonomia attacked me for years, knowing it would always have control over me. You see, dysautonomia doesn’t care how old you are. It doesn’t care how badly you wanted to go to that party or that game or that show. Illness is simply apathetic to you and your teenage life, or at least what’s left of it. Dysautonomia only lets you want what it will never let you have.

If you’re anything like my mom, though, you knew that already. Not because your daughter told you, but because every moment she struggled, you struggled too. She’s your girl, after all. You went from securing bows and braids to tying the backs of hospital gowns and fixing IV tape. You have always been there. If you’re anything like my mom, you know exactly how much pain she’s in, because it’s your name she’s begging for at 3:00 a.m. when it’s too painful for her to sleep. It’s your name you hear through the baby monitor you put in her room at night so that if she needs you, all she has to do is whimper.

It’s you. It’s always you.

If you’re anything like my mom, you’re exhausted. You’re tired because her sleepless nights are yours too, and her late night imagination about what it would be like to go past the boundaries her body has given her flood your ears every night. You’re exhausted because even when she’s sleeping, research never ends for you. You never stop searching on her behalf.

If you’re anything like my mom, you simply never stop. You never turn away or shield yourself from what she’s going through, and you never once give up on her. Even when she’s given up on herself.

You’re the one painting her nails when she’s too weak to do it herself, and you’re the one playing countless rounds of Gin Rummy until she’s not thinking about where she is and what she’s going through.

mother playing card games

girl playing card games

If you’re anything like my mom, you’re the only person with the strength to have empathy for her struggles but still be able to call her out on her horrible tone and back talking. To the world you’re her mother but to her? To her, you’re everything.

You. Are. Everything.

If you’re anything like my mom, you are your daughter’s whole entire world. You’re the closest thing to a superhero she’s ever going to see, and you’re her best friend. You’re who she wants to talk to at the end of the day, when she was finally able to go out and have a good time for the first time in what feels like forever.

If you’re anything like my mom, don’t forget how important you are. Don’t forget how much your daughter values you and appreciates you, because I promise you she does. She’s always going to be your girl, the one you raised and potty trained. She’s always going to be that 3-year-old walking around in your heels, even when she’s 18 and going out on a date because all your late night efforts and sleepless nights finally found something to ease her pain.

To the mother of a girl with a chronic illness, you’re the best, and we love you so much.

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What Photographs Don't Show About My Health

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A picture only represents a moment in time. It can show physical appearances and possibly some background information, such as location, friends, pets, and hobbies. On the outside a person can look healthy, beautiful and may seem like they have it all together. However, if you look into their eyes and their smile, there is a very different story.

What people cannot see in a photo is that I have fought and almost lost my life several time. They will not see the tubes that hang out both my chest and abdomen. They will not see the scar that goes from my breastbone to pelvis. They will not see that I no longer have a colon and that I was forced to get an osteotomy. They will not see the pain I am going though. They will not see the fear I face everyday. They will not see God’s grace in my heart and they definitely will not see the 30 times a day that I throw up.

Sometimes when people ask how I am doing, I say generic things such as, “I’m hanging in there,” or, “Just taking it a day at a time.” They think that outer beauty is all that matters, but I am so much more than my appearance. I am more then just the girl smiling in the pictures. Pain or not, we all have a story that cannot be depicted by a picture.

If you see someone smiling in a photo you would think that the person is happy. However, smiling when your chronically ill is more of a form of acting. We have been trained to say, “I’m doing great,” or, “fine,” because heaven forbid you make someone uncomfortable by telling them how you really feel.

What people also do not know is that at times we have “good days” and get out of the house. When that happens people start questioning your illness, but again they don’t know how hard it was to even get up and leave the house.

So, yes I get up every day like everyone else. Only in my case, I fatigue much easier that my non-chronically ill friends. I fight everyday for my health. I fight everyday to smile. I fight everyday to stay positive. I’m a fighter and that is just something that you will never be able to portray in a picture.

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Thinkstock Image By: Smitt

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25 Dysautonomia 'Veterans' Give Advice to the Newly Diagnosed

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Very often in our support group, we go through large growth spurts. Sometimes it happens that we are adding a bunch of people who have had dysautonomia for a while and are simply finding our group for the first time. A few weeks ago, we happened to add a lot of those who were newly diagnosed. We asked some of our “veterans” to share with our “newbies” the best advice they had that they wish they had been given at the beginning of their diagnosis journey. Here is what they came up with, and we think it’s a fabulous list of some well earned “sage” wisdom from seasoned veterans:

1. “Things will get better with time and knowledge.” – Amanda A.

2. “No two people’s journeys are alike… don’t compare yourself to others. You know your body better than anyone.” – Dani F.

3. “Keep advocating! Take one day at a time.” – Maryellen W.

4. “Make sure your specialist listens to you and knows your symptoms. Not all treatments work for everyone.” – Bette D.

5. “Work to find your primary cause of your dysautonomia.” – Todd S.

* Note, we did point out here that not everyone is able to find their root cause, and we felt that was important for those who were newly diagnosed to know. We still loved this comment, because so many of our veterans have been able to find their root causes, or to be lucky enough to work with doctors who had a lot of patience and the willingness to refer out to other specialists in an attempt to identify the root cause, and it can be important for those still looking to consider when to move on to another doctor who might be more willing to help them. We also posted the known underlying causes of dysautonomia.

6. “I agree that we are all unique and have different journeys. I would also add to keep track or have a log of what you go through daily and write a list of things you want to discuss with your doctor just in case you forget that day. Writing lists helps me so much. Also, it is ok to rest and take care of yourself. Lastly, it is ok to switch doctors if your doctor isn’t helping or understanding.” – Laney R.

7. “Listen to your body. Learn its ins and outs and signs. When your new it can feel as though you’re barely treading water, but you’ll get there.” – Katie T.

8. “Having lived with it for almost three years I’d say — what works for some does not work for all. I’ve been advised to do so many different things (give up gluten, etc… turns out I have gastroparesis and gluten is one of my only safe foods along with soup with clear broths and Jell-O and crackers, etc). Do 1 thing at a time to see if it helps and don’t feel pressured to do it just because others are.  Oh, and goodness… be kind to yourself! If someone you loved had these conditions… you would be overwhelmed with compassion for them. Turn that inward!” – Melissa S.

9. “Trust your instincts. If you think you’re bad enough for an ER visit, then go! A little saline never hurt anyone… and for us, it can really be a lifesaver.” – Laurie H.

10. “Oh-so-many times I look back and wonder why I refused an ambulance because ‘I didn’t want to make a fuss’ — if I’d only been more ‘fussy’ I probably would have gotten a diagnosis a lot earlier!” – Claire M.

11. “Food can be your best medicine or your worst poison. Listen to your body. Two of my favorite safe foods are homemade chicken stock and white rice, because together with a little time and effort, you can make amazing risotto. It’s four whole ingredients and it’s an absolutely amazing new flavor and texture. Find ways to love the foods you can eat, if you’re still able to eat at all. (I wanted to be a chef before this, so I’m a little food oriented.)” – Mariah M.

12. “Stay hydrated. There is a long-held basic rule of thumb for daily hydration. It is: Half your weight (in pounds) is how many ounces of water you should consume every day.” – Cindy S.

13. “When reaching to the back of the refrigerator, make sure you have long arms, or your head clears the side of the fridge. Also, make sure your head is outside of fridge before standing up.” – Lisa C, a.k.a. our resident comedian)

14. “[POTSies] move slowly when getting up from laying down to sitting, and sitting to standing. Avoid bending around, and if you do, stand back up slowly.”- Cindy S.

15. “Drink your water each and every day. And agreed — listen to your body (and sometimes close your ears to everyone else around you when they make comments.). You can pay a dear price for overdoing it, and many people are not going to get that.” – Deb R.

16. “You will have periods of bad days but I promise there will be good days, too! Find your new ‘normal.’ You will figure out what helps and what hurts, remember that and trust yourself! Rest when you need to! Push yourself when it’s important as long as you will rest afterwards. It’s a balancing act sometimes! Listen to your body, trust your instincts, and give yourself grace! You are a fighter! It’s ok to have have bad days, just don’t ever stop fighting!” – Beth C.

17. ”Managing this is a series of small victories. There may be the occasional breakthrough for some, but mostly it is a compilation of successes that is found over time. For example, raising the head of your bed may not seem to make much of a difference. Either compression stockings or extra salt and water. But combined it may make some difference. Again, my point is much of this is a series of small victories that accumulate to being a better managed you.” – George J.

18. “Slowly increase your salt and water — way beyond what you think is normal or healthy (with the supervision of a doctor). Measure it obsessively. Once you have the dose that helps, never miss a single dose. Also keep an eye on the barometric pressure — that can mess with you. If you feel unwell for ‘no reason’ I bet you it’s the weather.” – Claire M.

19. “My sage advice is this: keep a symptom diary. In the beginning, the numbers probably matter, but as a veteran I find it isn’t the number as opposed to the symptoms I pay attention to. I rarely take my vitals much these days. Medication management can be hard, and it can be a trial by fire to find the right meds at the right dose and the right combo, and you have to find the right doctor for you for that process! Flares can be hard, really hard, and as an EDSer, my good times are spring and summer and my bad times are fall and winter, and my winter flares throw me off every year. I’m lucky to have a wonderful and amazing local team of doctors and out of state experts that took me years to build, but I reap the benefits of that hard work now, and that does include identifying my underlying cause of dysautonomia. It was an uphill battle in the beginning, but it did get a lot better with time, and I am glad I advocated hard for myself until it did!” – Alexandra Z.

20. “When you think, ‘I can’t handle this,’ know that deep down inside a part of you can. That part might seem small, but it’s the flame of motivation that never goes out. Ask for encouragement or support on this group on those days. This holds true for most humans… we all have rough days. ‘Be kind, for everyone you meet fighting a hard battle.’ But it’s especially true with invisible illness.” – Beth G.

21. “It’s a roller coaster, both mentally and physically. I have five family members with it and we’re all a little different even though we have similarities too. Things that help me beyond meds: a shower chair, my wheelchair for going out, fluid loading (500 mL in less than five minutes) right before I do something that could make me worse, my heavy duty compression, meditation, and self-hypnosis. Good psychological support too. I know for me when it first got really bad, I didn’t want to go to seek that help because I had had doctors tell me in the past that my condition was psychological and I felt like I was saying they were right if I went to someone. But eventually I realized that I was depressed. That it went along with being sick and was normal. Finding someone who specializes in chronic illness and pain can be very helpful in gaining coping mechanisms.” – Erin S.

22. “Definitely that you need to do your own research and not be afraid to push your doctor to try different treatment if something doesn’t work for you.” – Julie R.

23. “Listen to your body. When you need to rest/sit etc. make sure you listen, even if you have to sit on the floor. You may look strange to others but sitting on the floor is better than hitting it. Also, it’s so important to drink those fluids. Have both plain water and electrolyte drinks. And don’t be afraid to advocate for yourself, and try different specialists until you find one that works for you. Don’t stay with someone just because other people have liked them. We’re all different in terms of personality, what we are looking for in a doctor, as well as our symptoms. You’re strong, and you will get through this. On tough days (and good ones) we are here for you.” – Emi M.

24. “Always be prepared when leaving house. Salty snacks and fluids!” – Jennifer O.

25. “Listen to your body and remember doctors don’t always know everything. Don’t be afraid to fire a doctor and find a new one if your current one isn’t treating you right.” – Chassity F.

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Thinkstock photo by poplasen

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