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Wednesday, July 24, 2013

71

Interview with a Person Who Used to Be Paralyzed

Laura is a 28-year-old woman who lives in Virginia.

So tell me what happened the first time you lost the ability to walk.

I was at the grocery store, and I felt queasy out of nowhere, so I went to go sit on a bench while my boyfriend finished shopping. By the time he came to get me I could barely walk. Getting to the parking lot felt like sprinting a mile.

Then over the next few days I developed this full-body exhaustion that made it almost impossible even to sit up.  I would be lying on the couch staring at something I needed to get, five or six steps away, and just steeling myself to do it and not being able to move at all. One time I stood up and was trying so hard to communicate with my legs and I just fell over.  

How long did this last, and how immobile were you?

I could shuffle very slowly to the bathroom and back, and I’m talking two-inch steps at best. The episode lasted about a month, and I spent all my time on the couch or in bed.

How did this affect your life? What did doctors say?

I was working for Cornell as a software developer, and my job was good about it—I went on sick leave and then on short-term disability. I just thought I had a weird virus, because that’s what the doctors said. It was weird and scary and definitely annoying, but I thought it was temporary and a one-time thing, and I could feel myself slowly getting better.

After you regained movement, how much time passed until the next episode?

Six months. I’ve had five episodes total, all either six months or a year apart; all the episodes lasted about a month, except for the last one, which was for about eight months.

I remember when it happened the second time it felt very familiar. I knew it was back.

Were you scared to feel it come back?

Yeah. I got more and more scared the more it happened. I was worried it was multiple sclerosis, because that can cause heavy fatigue and comes in this same relapsing, remitting form. I was never worried that it was fatal or anything, but I was worried.

Did you go down a WebMD rabbit hole?

I did definitely spend a lot of time looking up fatigue stuff.

That was the only feeling, extreme fatigue? Was there any pain, any mental symptoms?

Just fatigue. I could feel everything in my legs, had no pain, no other symptoms—was never in a mental fog or anything. But the fatigue was debilitating. I couldn’t brush my hair or hold my arms up to type on the computer. I got tired holding the phone against my ear, moving my mouth to talk. And fatigue is a non-specific symptom, so it took a long time even to narrow it down to the four major possibilities the doctors were telling me: MS, chronic Lyme disease, chronic fatigue syndrome, or chronic mono.

You’ve been with your boyfriend throughout all of this. What was it like for him?

I know it was scary for him, but mostly he says it was frustrating to see so many doctors and have no one give us an answer. We were living together, so he did absolutely everything: he brought me water every two minutes, brought me my toothbrush so I could brush my teeth on the couch. He’d carry me down the stairs and lay me on a blanket outside so I could get fresh air. During one of my episodes we actually got to go to Hawaii—we’d had the trip planned for forever, and decided we’d give it a shot even though I was sick—and I was in a wheelchair, and when places weren’t accessible he’d just carry me on his back.

How many doctors did you go through? 

My PCP, two pulmonologists, two cardiologists, two neurologists, two infectious disease specialists, a rheumatologist, and a few more—maybe about a dozen in total.

Was this expensive? Were you mad? 

It was a shock for me to realize that doctors didn’t have an absolute handle on everything medical. I thought the first specialist I went to would be able to solve it, because I’d never been to a specialist before—and I remember he was just like, “I don’t think you have an infectious disease,” and walked out to send me back to my primary care doctor. I was like, “Wait! Wait! Help?”

And I had good health insurance throughout this whole thing. I can’t imagine doing it otherwise. There were copays, and a few big expenses when we didn’t get pre-approval, but otherwise it was okay.

The worst thing really was when I saw the EMTs had written on my chart—during my fifth and last episode—that the reason for my admittance was “behavioral/psychological.”  I’d had to be taken there in an ambulance after my parents found me on the floor during Thanksgiving because I just couldn’t move at all.  My boyfriend and I laughed about it, but it made me really angry, too.

Did you get that a lot? People telling you that you were imagining it?

Oh, sure. One of the doctors told me that I was only experiencing stress from being away from my boyfriend, who by then was my husband. He put me on two different antidepressants.

Did you ever start to buy that you actually might be imagining it?

I did wonder sometimes, am I making this happen? Am I doing this to myself? Then I decided, if I am, it’s so far in my subconscious that I can’t possibly do anything about it. And my husband and family saw that it was medical—not something I was doing for attention or anything like that—and that helped a lot.

The antidepressants had no perceptible effect on me, other than one of them making it easier to sleep. I'd been having some insomnia.

I can imagine it would be easy to develop insomnia when you can’t move your body. What did you do during these episodes mostly? 

I got a tablet, I played lots of games, I tried to learn how to meditate, I learned some Spanish, I watched a lot of TV, I started a blog, I wrote. I really hated being stuck on the couch.

Did you feel guilty about your boyfriend having to do everything?

Very guilty. I was living entirely on the help and good graces of other people, and that’s a hard way to live. I had to ask so much of him, all the time—I would go through this excruciating decision-making process of thinking, “Can I really ask him to get me my toothbrush when I could do it myself, even if it would take twenty times longer and it would exhaust me for the rest of the day?”

And then you got married in the middle of all of this, before you got your correct diagnosis. What was the discussion like about the future, and what might happen with your health?

We’d sort of decided that this would be something we’d have to deal with once or twice a year, and that it was okay. But when I got sick the fifth time, and it lasted for so long without me getting better, I felt like my body had betrayed both of us—broken the agreement.

There were some dark bits in there, lots of crying in public. One time we tried to go to the movies and I couldn’t even sit up, and afterwards I was waiting in the lobby for him to get the car, and everyone was just walking by so effortlessly, and I was so jealous of how they could move wherever they wanted, however fast they wanted to. I remember on the way to Hawaii, I cried in the plane because I couldn’t make my legs walk down the aisle, and a woman thought I was afraid and tried to give me Xanax.

Tell me about the final episode.

It lasted June 2011 to February 2012, and it started when one of my friends from high school came over and we got drunk for the first time—I was kind of a late bloomer on that—and it was pleasant and fun and great, and then the next day I had a massive episode and it never ended.

How did you feel at, say, month five?

I remember picturing being in a hallway and watching all the doors just closing and closing. I thought, or hoped, that I could continue my career as a software developer—maybe someone could rig up a computer at the right position so I could use it lying down. But I felt like the door of having kids was closing, and that was something I’d wanted so badly. There was no way I could imagine taking care of someone without being able to get off the couch.

You essentially experienced what it’s like to be very elderly at a very young age, and that’s not a physical state that many of us can even imagine. 

Yeah. I think a lot of people our age are so afraid of physical debilitation or even just being old. I remember seeing someone on a TV show say she wanted to die before her body started to break down. And yeah, it’s very very bad to not be able to function well in your body—but I could still experience happiness, still be glad to be alive. It’s not better to die than to be debilitated, I don’t think. Even if all you can do is lie there, lying on the beach is still pretty good.

How did you finally get the diagnosis, and what is it?

I went to the ER at Thanksgiving because I was on the floor unable to get up. I stayed overnight on a bunch of IV fluids, and in the morning I could take three-inch steps, which was a massive improvement. One of the characteristics of my illness was that I improved almost imperceptibly normally, so picking up even an inch overnight was unheard of for me.

So, my engineer husband, who had been trying to isolate the malfunctioning system the whole time, looked up what was in the IV—and it was just a bunch of concentrated saline. He talked to a friend in med school, who suggested that I just try to eat as much salt as I possibly could for a week. I did—I swallowed handfuls of it, which is gross and burns your mouth—and I could immediately tell that I was getting better, even though it was still slow.

I went to a new neurologist and told him about my fatigue, and that salt had made it better—and he told me about POTS.

What does POTS stand for?

Postural Orthostatic Tachycardia Syndrome. Basically, my blood vessels dilate too much and my blood pools at the bottom of my body—and I didn’t have enough blood, so my heart was beating too fast trying to get the blood anywhere at all. Triggers for it are anything that dilates the blood vessels: heat, alcohol, exercise, illness. The test for it is strange—they strap you to a table and tilt you from flat to standing up, and they wait to see how long it takes you to pass out and what your heart rate is.

I took that test at the office of one of the only doctors on the East Coast who specializes in POTS, and the staff were standing around me looking frightened because usually kids are the ones who have POTS, and it’s easy to catch a kid that’s passing out but less easy to catch an adult. But the test verified that I had it, and the doctor looked at me with this very wizardly manner and pressed my hand and told me that I had it.

He put me on this medication, something they used to give to astronauts to regulate their blood pressure coming back from space. That, combined with the salt, has put me back on my feet—and it’s been amazing.

And you said you’re pregnant now! Congratulations—have you had to do anything differently?

I did a lot of research before I got pregnant, wanting to see if this was something I would pass down, but there’s not a lot of information out there—no one really knows what causes POTS. But often pregnancy can temporarily make POTS better because when you’re pregnant your blood volume almost doubles. I had some non-POTS fatigue my first trimester and thought it was almost pleasant because I could still walk. I’ve had a smooth pregnancy otherwise, though!

What do you have to avoid now?

Alcohol—anything more than a drink and a half will certainly set off an episode—and baths, and showers hotter than lukewarm. I walk a lot, now that I can, but I don’t exercise vigorously. I still take so much pleasure in being able to walk, just go to the store, do whatever I want. When I first started walking normally I felt like I was flying around everywhere.

So that aspect of gratitude has not worn off.

Not at all. Even not being able to go out in the heat, that limitation seems so tiny now.

I remember in the later months of the last episode, I was thinking a lot about hope: whether it’s useful or harmful. I began to think it was a barrier to acceptance, and it was better to let go of hope and go for acceptance. So I did, and it was peaceful in its own way.

But then we figured out the salt thing and immediately I started to hope again. So now I think hope is just involuntary. And those times were dark, but the last five years was not a hole in my life. Even the months that I was sick, that wasn’t a total loss. Like, there was this one time in Hawaii when I rolled up to the beach in my wheelchair, and the lifeguards just ran over to me and brought me this balloon-wheeled beach wheelchair, which I didn’t even know existed. These two old guys were watching me and just yelling, “Good for you, sweetheart! Good for you!”

Photo credit NToster/flickr



71 Comments / Post A Comment

adorable-eggplant

Amazing! Thanks for sharing. I cannot even imagine how scary that must've been before the diagnosis.

allofthewine

@adorable-eggplant totally agreed. This sounds totally horrifying and so glad she's doing better now.

lora.bee

Stunning. Thank you for sharing. One of my coworkers recently broke her foot and was on crutches for six weeks - between seeing her (exhausting, somewhat scary) experience and reading this, I am more than grateful for my healthy, working body.

Drawn7979

@lora.bee
impressive

Barracuda

Jia!!! You've done it again!! Thank you for a great interview. Thank you, dear interviewee, for speaking so candidly about your experience. :)

laurel

Gah, the importance of having a smart lay person on your team when you're sick.

laurel

Because I wanted to see one and you might too:

fondue with cheddar

@laurel THAT IS SO COOL.

TheRisottoRacket

@laurel Saw this at North Ave beach a couple of weeks ago and everyone was just like, "IS THAT A BEACH WHEELCHAIR?! THAT'S AMAZINGGGGG!"

laurel

@TheRisottoRacket Any idea if you can go in the water with it?

TheRisottoRacket

@laurel No idea, the woman I saw in it looked like she had just sprained her ankle or something actually on the beach was getting wheeled away. I would hope so since it's made for the beach!

fondue with cheddar

@laurel It sure looks like it is. People who use one shouldn't have to sit on the sand and watch everybody else enjoy themselves. What an awesome idea!

whizz_dumb

Fascinating. Did you purposefully build the suspense and mystery by delaying the disclosure of the correct diagnosis? Because it worked. I especially like, "When I first started walking normally I felt like I was flying around everywhere." Makes me feel lucky for my health instead of guilty for drinking too much and lazy for not working out enough.

j-i-a

@whizz_dumb nah that is just my editing trix, laura was very forthcoming that she knew the answer :)

whizz_dumb

@j-i-a I knew it. Such an editing trixter, stringing me along. Nice work.

hurts

@j-i-a good trix!

Derbel McDillet

I have this, too! My bad times were in high school, when I missed a ton of school and went through about 3 years worth of diagnostic testing. Eventually the tilt table test diagnosed to POTS. It's interesting for me because I find that I feel healthier when I'm a little on the heavier side. When I'm thinner, the POTS seems to act up. Nothing like a few medicinal potato chips!

MmeLibrarian

@Derbel McDillet This sounds like a horrible disease and I certainly wouldn't want to have it, but I would like to pause, lovingly, for a moment on the idea of "medicinal potato chips."

fabel

God, I hate that they thought you were imagining it! But very glad this story has a happy ending.

QuiteAmiable

So glad the doctors found the cause! My boyfriend got very very sick when he was in high school (back before I knew him) and almost died. It took the doctors several weeks to determine what was wrong; it turns out he has an auto-immune disease called Wegener's granulomatosis. But they thought he was being "dramatic" and making things up, too!

BoatGirl

@QuiteAmiable It's scary how frequently doctors decide that a patient is making it all up just because they're stumped! They seem to believe that they're so smart, that if they don't know what it is, clearly the patient is trying to pull the wool over their eyes.

kellyography

@QuiteAmiable My sister was just diagnosed with this! It's terrifying because she's so young and went through two years of testing and treatments before they found the cause of her symptoms, but it definitely opened my eyes with regard to mystery illnesses and diagnoses.

QuiteAmiable

@boatgirl indeed.

@kellyography My boyfriend was 16 when he was diagnosed! He's been in remission since then, thankfully. But anytime he gets sick, even with a cold, I tend to overreact :-/

MissMushkila

@QuiteAmiable My sister kept going to the doctor because she had debilitating cramps. We all knew something was up, because she has a pretty high tolerance for pain, but they kept sending her away with ibuprofen. Until a few months later when they had to rush her into surgery because it turned out she had a giant cyst on her ovary that torqued it and killed the tissue. Luckily, she has another ovary, but it was frustrating that she went in like 10 times and they never thought "hey, maybe we should do some tests?"

I'm Right on Top of that, Rose

This was great. What a scary/weird experience! I always wonder what happens to the psyche when the body starts to turn on a person. It's also interesting that hope can be a survival tool, an involuntary reaction, a dangerous indulgence and a comfort.

iceberg

Great interview! That sounds like a really terrifying experience. I am so glad you were able to find out what was causing it!

polka dots vs stripes

Another great interview. Thanks for being so frank, Laura! I was wondering - it sounds like you were able to mentally do quite a bit still (blogging, reading, wanting to work). Was the fatigue purely physical? How did it effect your attention span and your ability to accomplish things that require more brainpower than legpower?

FlufferNutter

Wow. What an amazing story. I completely relate to Laura's statement, "It was a shock for me to realize that doctors didn’t have an absolute handle on everything medical." That realization has continuously slapped me in the face several times in the past few years. It's on par with realizing that your parents are not infallible in terms of, "Oh. This is what it feels like to be an adult."

nonvolleyball

@FlufferNutter this. I almost died after a doctor failed to notice I had appendicitis, & one of the (many!) lessons learned from that experience was, "if a diagnosis seems wrong to you, push back."

chevyvan

@nonvolleyball OMG, how is that possible?? It's so common! I had appendicitis, and I thought it was the stomach flu at first before the pain localized to the right side of my abdomen. Did you go to the doc too early?

nonvolleyball

@chevyvan that is a good question! honestly, I don't know--if we'd gone down the right WebMD rabbit hole, we could've figured it out ourselves. & I'd been sick for two days by the time I went to the doctor. but I had a somewhat unconventional presentation (the pain wasn't localized, but kind of all over my abdomen) & since I got sick the day after I was out celebrating my birthday, I think he just assumed I was a generally unhealthy party girl nursing a particularly epic hangover or something.

also, sometimes when your appendix bursts you initially feel better due to the pressure relief, & then eventually the infection wins out & you end up spending a month in the hospital. SO much about this piece resonated with me, from the gratitude for/necessity of a supportive partner, to the frustration with your body not working the way it's supposed to, to the power of hope (however delusional).

MilesofMountains

@nonvolleyball I knew someone who did die from not pushing back. My mother's godmother went to the doctor with fatigue and some other symptoms and told him she felt like something was wrong with her body. He told her it was depression, and expected given that she was an elderly woman with no husband or children. It turned out to be a brain tumour that they only found shortly before it killed her. I guess she might have died anyway even if they had diagnosed it right away, but even though she knew it wasn't depression she didn't push back for a long time and they never took her seriously.

nonvolleyball

@MilesofMountains that's terrible.

I've told this story before, but one of the most awesome parts of my hospitalization was when the chief surgeon brought the residents by to check me out after my second surgery. they were all, "oh, she needs another CT scan, we need to take out her catheter ASAP so she doesn't get a UTI," all this stuff that they'd learned as part of the official protocol. & then he asked me what I thought, which was "I'm incredibly weak & sore right now, so I'd really like to avoid another CT scan & if I can avoid having to get up to go to the bathroom for another day or two, that would be amazing." he turned to them & was like, "there's your lesson--when the patient is lucid, you listen to them." in the end, I didn't have another CT scan for weeks & they let me keep my catheter until I was able to walk (& I didn't get an infection--most likely because my bloodstream was like 40% antibiotics at that point). it's weird when you're being used as an example for med students, but I was completely okay with that particular incident.

sometimes I think it's emotionally easier for medical professionals to over-rely on their training--if they're dealing with biological systems, & not actual people, then they don't have to worry about the human implications of missed diagnoses or the messy fallout of an emergent condition.

Roxy Throatpunch

@FlufferNutter We had a family friend die at 22 because of this. She was in nursing school and went in to the hospital with what she thought was meningitis. They sent her home, telling her it was...I don't remember what, something that obviously WASN'T meningitis, and she died that night.

Her parents ended up suing the hospital and settling, which brought its own issues. But it was awful.

LeafySeaDragon

@FlufferNutter when my older son was 13 months or so, he wouldn't eat his cherrios and my husband KNEW something was wrong (i fully admit even at first i was like, he's fine, whatever.. but he wouldn't eat or drink so it became obvs to me that something was wrong as well, but at they point we were already at the hosp) but we got to the er and after my husband ranting and railing and pushing they gave my baby a full exam, and they found a PENNY lodged in his lower throat, about collar bone level. they ended up putting him under general and scoping it out, but i was flabbebrgasted.

finguns

@FlufferNutter Oh my god, this is my nightmare in life. My husband and I are really horrible about housekeeping and I used to lie awake at night envisioning what might be in our baby's throat/GI tract.

blushingflower

Jia, I always love your interviews! And I love how the Hairpin values the stories of "normal" women (and men), not just celebrities.

stonefruit

Holy crap, I was practically biting my fingernails in suspense! I was worried you wouldn't have a diagnosis, or the diagnosis would be something like Lyme disease where doctors don't really understand how it works or how to treat it (DO NOT read the New Yorker article from a few weeks ago about Lyme disease) (or maybe ABSOLUTELY DO read it? still not sure). I'm so glad to hear things are turning around for you.

sophia_h

I've probably talked about this before, but trying to get diagnosed with something -- anything -- when I had weeks of double vision and tingling hands last year was so frustrating! Eventually mine did turn out to be multiple scelorosis (not the end of the world, pretty treatable and with lots of research funding) but I just went back and back, insisting this was weird and if I didn't have a stroke it was definitely SOMETHING.

I sometimes wonder if the internet makes doctors take patients less seriously now, because everyone can google weird symptoms and come in freaked out they have something weird and terrible. For that reason I tried to curb my natural hypochondriac tendencies and not come in with WebMD theories...the one time I could maybe have actually diagnosed myself and sped up the process, of course.

laurel

@sophia_h If chatting with one of the doctors I know is any indication, yes, the internet makes at least one doctor take patients less seriously. Which is a dangerous trend, frankly. I just corrected my own doctor on recent changes to a particular blood test scale recommended by the relevant professional organization and I'm getting better treatment because I did.

MilesofMountains

@sophia_h I recently saw a doctor (not my regular GP) who took a very different route. I came in with kind of vague symptoms and she said "I'm sure you've been looking this up on the internet. What does your gut tell you this is?" and then she agreed with my "gut" then asked which treatment I'd like to try that I'd read. It was a little disconcerting, actually, but I guess my gut was right because the treatment worked.

sophia_h

@laurel I did eventually look and I'm glad I did, because there was one weird ms symptom I'd never have thought to mention because I'd chalked it up to my bad posture and sitting at a computer all day. When I reported it to the ms specialists, though, I think it was a huge part of making the diagnosis.

hopelessshade

@sophia_h I was lucky enough that while I stumped the ER, my PCP caught on and gave me an MRI, which as it lit up like a christmas tree, was a pretty definitive arrow to MS. But even that relatively short route took what felt like forever. (especially since my first relapse came with mobility issues)

sophia_h

@hopelessshade I had free county health insurance at the time and wasn't seeing an actual doctor at the clinic, which definitely slowed things down. Luckily I got referred to an opthamalogist, who saw a weird pupillary response, got me referred for an MRI, and then I was sent to a university hospital specialty department, thank goodness.

lepidoptera

I have this! I've never had an episode that lasted as long as Laura's though. I fainted all over the place throughout high school(as well as a host of other funny symptoms that didn't seem related). I went to the doctor after I knocked myself out fainting in the shower. I thought she was nuts when she told me to up my intake of salty foods and to drink more water...but heck if I didn't start to feel better! It's so nice to hear about someone else with this disorder, most especially because of the happy ending :)

fondue with cheddar

@lepidoptera Whoa, it never occurred to me until now, but I used to faint in the shower in my teens and early twenties! It doesn't happen anymore, thank goodness, but I do fatigue really easily, in a general bodily sense and holding my arms up as in the hair-brushing example.

I did a lot of canoeing with my boyfriend recently, and I kept having to paddle a couple times, switch arms, and then take a rest. He was doing most of the work even when I was paddling, and it wasn't that I overworked myself because I didn't pull any muscles. My arms just got really fatigued pretty quickly. Hm...this is something to consider.

finguns

@lepidoptera This is so weird - I perpetually fainted in a shower growing up (knocked myself out twice, not to mention repeatedly embarrassing myself at boarding school) and suffered from episodes of general malaise that my parents always chalked up to my bookish sensitivity to the world at large. My mom drug me to every specialist in the (still small) city near our very small town (for the passing out, not what she perceived as the drama queen malingering) and all they could come up with was a very, very minor heart valve issue that the doctors had never heard of causing such issues. I grew out of it in my early 20's, but a boarding school friend who later went to med school told me she thought of me when they learned about POTS. So strange to think what my life had been like growing up if I had actually had something everyone was forced to recognize as medical instead of always being that annoying lazy girl who didn't go for physical exertion.

(Also weird, I grew up the child of healthy-eating flower children and was so averse to salt that I ate unsalted potato chips until I discovered the deliciousness that is salt in my mid-20's.)

missedconnections

This interview is fantastic, and the comment about knowing what it's like to be elderly hits a mark for me. I worked for years in nursing homes, specifically Alzheimer's units, and the idea of getting old is very scary to me. The patients in these units not only lost physical and mental capacities, but any choice they had in their lives and their daily routines. The nurse aid to patient ratio at most places meant that after dinner, I had about fifteen minutes to get a patient ready for bed if I was to get to all of them before 9pm. An immobile patient such as Laura would have had to wait until I had the time and the help to get to her. So many jewels in her husband's crown for taking that on.

chevyvan

Okay, so now I am weeping at my desk. I've been telling myself that I'm going to go for a run every day for about 2 months now, and today I am going to actually do it b/c my body is healthy and my legs work.

I've had one incident in my life when the doctor thought I was crazy. What an awful, awful feeling. I had mono, and when I came into the doctor's office I was in a lot of pain and misery b/c my glands were so swollen that I could barely swallow and I hadn't slept the night before. So I basically showed up crying. And before the doctor examined me, he sat down and said, "Honey, what's wrong? Is there something going on in your life that you need to talk about?" Of course, that made me even more upset. I think he felt bad about doubting me when he finally felt my glands and my spleen (which was hard - a symptom of mono).

like a rabid squirrel

This is a great interview and I'll second (and third) everyone upthread whose blood is boiling at the doctors not believing you. I had a growing blood clot for 3 weeks last year and my doctor repeatedly tried to tell me that it was an injury and that she wanted to send me to an orthopedist. It wasn't until I called her office in tears (of pain and frustration) that she finally sent me in for an MRI. It was somewhat validating when she freaked out after the hospital diagnosed me properly and told me that I had to rush across town to see a specialist immediately.

I'm so glad that you got a diagnosis and congratulations on your pregnancy!

Joey

Mazel tov!

Pretty pony

Ummm your story basically describes mystery illness of last summer, as well as other milder and shorter episodes since that time. Those of you who have been diagnosed - if you don't mind, how did you find a doctor who would take you seriously and what specialists did you see? I eventually just ran out of energy to deal with the situation and stopped looking for answers, and have sort of learned how to live around the fatigue when it happens. (Disclaimer - I am not so much self diagnosing as asking how to deal with doctors who write you off when you barely have enough energy to brush your hair)

Anyway, hugs to you and your growing family. So glad that you were able to find some answers.

keristars

@Pretty pony
I don't have POTS as severely as described here, but last October (October 1st, actually, it was a Wednesday morning, I remember it very very clearly!), I walked the half block from my car to work and felt like I had run a marathon. Was absolutely body-exhausted, couldn't really catch my breath unless I was sitting down, and my heart was racing like crazy. It was scary!

Luckily there was a blood drive van out front of my building and I was like "can you guys test my bp/heartrate, because I can't focus enough to do it myself" and bp was normal/low and heartrate was like 110 sitting down. NOT normal for me! (That weekend, I went to my smom's for a football viewing pizza party with her, my dad and aunt, and I literally had to take resting breaks between bites of pizza, because trying to eat was, again, like running a marathon. My smom pulled out her heartrate thing and my pulse was up to 145bpm, sitting down.)

So I went to my PCP and she sent me to a cardiologist and my cardiologist pretty much immediately gave me a poor man's tilt table and diagnosed mild POTS. She also told me to drink a lot more water, avoid hot showers, hot drinks/soup, and alcohol, and sent me off for more testing, just to be sure. But in the middle of the tests, she moved to another city and I got stuck with a cardiologist who told me I was imagining it and my illness was just because I'm out of shape. Even though all summer, I'd been working to get into better shape and had been slowly increasing my water intake all year from 0. (Also, it's really hard to exercise when it's so exhausting and painful you can barely do half of the recommended lowest level.)

I was lucky that the very first cardiologist I went to was so decisive about it, because it helped me in my outrage against the second one and got me to ask for a third doctor. And this time I took my mom in with me, who is good at bullying doctors into treating her like a real person. And he looked at my tests, listened to my description of symptoms, and told me exactly why certain things make me feel better/worse. And now I know that I've likely been becoming dysautonomic for years but only recently developed the POTS element.

So my suggestion is to take someone with you who can corroborate your statements and shop around. If a specialist treats you like shit, go to a new one, because doctors are supposed to work with you.

Pretty pony

@keristars
good heavens, that sounds exactly like me. there were days it would take me nearly 5 minutes to walk up a flight of stairs. so glad that you had some answers, and that you had your mom with you to advocate. unfortunately, i'm on my own but i'm going to be a lot more assertive after reading through these comments...

just wanted to say thanks for the encouragement and support. I made an appointment for later this week and am going to go from there. Fingers crossed for an answer!

keristars

@Pretty pony
Best of luck!

It really pissed me off when my 2nd cardiologist was like "oh, you felt like you were going to faint while waiting in line for two minutes at the grocery store? that's normal!" So I told my mom and my stepmom, and my mom was the one who was available to go with me next time. My stepmom basically has a rule that she never goes into a doctor's office alone (she has MS) because just having a friend with you is helpful. Also, you can have two memories and interpretations of the doctor.

If you can't bring someone with you at all, definitely try writing notes about what the doctor is saying, your stats when they do your BP/heartrate/temp and so on, and note any test names or medications. This might be obvious, but I really learned the importance of it with my run-arounds last fall. Because I had the written records, I felt more assured when I asked the heart specialists group to switch me to a new cardiologist.

milkbreath

O my goodness! As I was reading this, I kept thinking "oh this sounds like my nephew...". My nephew has (had?) POTS starting at age 12 and his symptoms greatly decreased around 16 - 17. He still gets fatigue sometimes but he's a rather active teenager despite all he's gone through. He hiked around Yosemite and the Grand Canyon last summer! It's a frustrating disease and his mom (my SIL) was absolutely amazing - she fought to get him diagnosed and dedicated herself to getting him treated even when his doctors couldn't figure out what was wrong.

I'm so happy you got diagnosed and found a treatment that worked for you!

Editing to add a lil story: Since my nephew was bed-ridden for a majority of puberty, when he finally was able to stand for more than a few seconds, everyone in the family was surprised to see that despite his illness, he ended up being one of the tallest people in the family! I barely reach his shoulders!

Roxy Throatpunch

When I was 25, I had a TIA. And then a brain hemorrhage. And then another TIA. I eventually lost my ability to swallow and spent six weeks with a NG tube and seven weeks with a G tube to get nutrition, plus I carried around a little paper cup that I had to spit all my saliva into - I couldn't even swallow that.

We knew the cause of the TIAs (dissected vertebral artery) and the brain hemhorrage (bad reaction to Coumadin), but never really could pinpoint what was going on with my swallow. The PT I saw three times a week definitely had some moments when she thought that if I could just CHILL and RELAX, it would get better. Thankfully, she presented it in a way that made sense to me, not in a way that made me feel like she thought I was crazy.

It did eventually get better and I now officially have a "textbook swallow." The only residual issues I have are a slightly weak and wonky right hand (and I'm a lefty, so that's okay), the need for blood pressure medication (they think some hypertension contributed to the risk for the TIAs), and being categorized as a "high risk pregnancy" (my first pregnancy was fine and my second - KNOCK WOOD - is also going great so far).

BASICALLY WHAT I AM SAYING is that thank you for this. There was so much I could related to in here - it sounds sexy and all, but it really is no fun to feel like an episode of House.

And I'm so glad, Laura, you had (have!) a supportive partner. My illness happened a few months before I was due to get married, and this guy spent weeks hooking up my feeding tubes, handing me spit cups, driving me to doctor's appointments, and just generally being amazing. It makes all the difference in the world.

hellonheels

Thank you so much for this piece, and especially this:

"I remember in the later months of the last episode, I was thinking a lot about hope: whether it’s useful or harmful. I began to think it was a barrier to acceptance, and it was better to let go of hope and go for acceptance. So I did, and it was peaceful in its own way."

I've been dealing with two herniated discs that are pressing on my sciatic nerve badly for six months now, and hope is the thing I have struggled the most with - even though it's ultimately a treatable injury, there's no telling how long it will take to heal, and the trajectory of my experience has been two steps forward, two steps back. Recently, after about two months of steady improvement, both physically and in terms of my outlook, my second epidural steroid injection aggravated the nerve root and the result has been just hellish - there is no position in which I can sit or lie down without the already severe pain becoming excruciating. And the insomnia - I mean, it's not even insomnia, because I am so fucking tired I could sleep for days, but in practice I can only sleep for an hour, maybe two, immediately after my pain medication starts kicking in, and then I get back up and stand there, reading, in the middle of the night until I can take another pill and start the process all over again. I've been feeling like I had so much hope, I was almost there, and then the thing that was supposed to help me get there sent me back to square one.

I've always thought of myself as someone who has a good deal of mental and emotional strength but this has been such a test. I try to focus on all the ways in which I am lucky - I have great insurance, a flexible job that lets me work from home when I can't drive or ride the 45 miles to the office, an extremely supportive boyfriend who has stuck by me even at the lowest moments, friends who would go out of their way to take care of me - but sometimes it's so hard to look on the bright side. But Laura, you're so right, and your words really hit home for me and inspired me to look at the big picture - I might be in pain, but I still have a great, rich life, and there are plenty of little things I can take pleasure in even when everything else is getting me down. So thank you for that.

Also, this is such strange timing, but just after I read this earlier today, I found out from my back specialist that she was finally referring me for a microdiscectomy, so it might really truly be over soon. And like you said, the hope is totally involuntary. It probably won't be a panacea and I'll probably still have a long recovery, but as soon as I got off the phone with my doctor I literally started crying tears of joy because I finally get to have surgery (which is certainly not a reaction I ever thought I'd have, but desperate times...).

So anyway, thank you so much, both Jia and Laura, for this. It gave me so much perspective at a time when I really needed it.

chevyvan

@hellonheels Both of my parents deal with severe back problems, so while I cannot personally relate to your pain, I've witnessed the toll it can take on your life and your mental health. I hope the surgery provides you with some relief! All the best to you...

hellonheels

@chevyvan Thank you! I must say, one positive aspect of this experience has been all the people I know who have come out of the woodwork and shared their own experiences with back injuries. They are surprisingly common, much more so than I would have thought, and as a result I have found myself with a pretty widespread community of support, especially at work, which is great. I hope your parents are doing okay and that you are lucky enough not to inherit any issues!

peculiarity

This is an amazing interview. Our medical system is quite inept when it comes to these unusual diagnoses--your description of the infectious disease specialist just shrugging and sending you back to your PCP struck a chord with me. It's sad how hard we have to work for our health. I have a coworker who has Celiac disease, and it took her several doctors to find one who would really listen to her that something was wrong. She had done plenty of research (we work at a medical journal), had carefully recorded her symptoms, started recording her diet, and had to go through several doctors before one actually listened and believed her. It's sad how hard you have to fight for a doctor that cares and wants to help, and I applaud your strength!

I wish you and your family all the best of luck and health!

Gwdihw

This was so good, and congrats on the baby!

LeafySeaDragon

this was am amazing read! i was on the edge of my seat. i'm surprised at the comments, that's the interent for you. it put my recent freak out over genetic illness in perspective... borrowing trouble and armchair diagnosing man.

SarahSJE

Such an uplifting story. I can really relate.

I've had arthritis since January 1st 2007 when I woke up with a swollen knee. Doctor's just believed I'd had a fall since I must've been drunk on new years but I don't drink and I'd had a quiet night. Took a year to get a diagnosis and be given medication. A few months later my skin started falling off in sheets and I had red dots along the veins in my arms. I thought it was a reaction to the medication, no one believed me from my Rheumatologist to an allergy specialist to a dermatologist. They refused to let me stop my medication for at least 24 months and claimed it was a mental issue. Yes, of course!! Somehow I'm willing my skin to leave my body?! If my GP hadn't treated me like a human and listened to me I may not have had the courage to ween myself off the drugs against everyone's disapproval right then and there. He said if I thought that was it I should trust my gut even though he had no way to prove it and we'd just have to deal with the arthritis another way. Well, it worked, my weird side effects stopped and my arthritis even stayed in remission for 4 years.

I have to admit I still feel weird shame and rage whenever I think about how it felt to be told by two Doctors that I just had a mental issue and was doing this to myself. The shock of hearing that then made me cry in front of them of course which they took to be confirmation they were right. Aaaargghhh.

pulautidung

tks for yoy shareng,because I like stay on the beac alone

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