Healthcare fail: the diagnosis that wasn’t

May 24, 2015

The details may change, but the gist is the same. The symptoms are there, the request made, the answers not given, the diagnosis left unmade. It’s happened to many of us. It’s happened to me several times, actually. I’m still wondering how it happened with my Celiac Disease. Of course, technically I haven’t been diagnosed with Celiac to this day….

The first doctor ignored me for a while. When I was insistent that I wanted to be tested for lactose intolerance he said there was no test for it. Instead, he had me keep a food and symptom journal. He sent it to a nutritionist, then reported back that I didn’t have lactose intolerance. He didn’t care to investigate further. Last year I found the nutritionist’s letter in my records. She’d said it didn’t seem to be lactose intolerance but there was clearly something going on and she wanted to see me. I never got that message.

Then there was the gastroenterologist who diagnosed me with IBS after 2 minutes of a 10 minute appointment. He gave me a prescription to take before meals. Funny, but those pills never seemed to help. A couple years later I found a guide to an IBS diet on my own and followed it the best I could.

Another doctor took me seriously, at least, but was woefully inadequate. He ordered a colonoscopy to rule out Crohn’s, since an aunt had that. It was ruled out and my symptoms continued to be attributed to IBS. Well, my gastrointestinal symptoms did, anyway. It was assumed my other symptoms were completely unrelated. How convenient for them. How horrible for me.

Then there was another gastroenterologist. She did an endoscopy. I wonder if she checked for Celiac? I would hope so, but she never mentioned it. She said she was checking for reflux. She doesn’t practice any more and I haven’t had a chance to find her notes in my hundreds of pages of records. But I do remember her diagnosis: IBS and reflux, plus something else that she wasn’t sure of, but I shouldn’t be too worried. I’m not kidding! That’s what she said! She said that my symptoms could not be entirely explained by IBS and reflux so there had to be something else. I was sure I didn’t have reflux. My aunt and grandmother had it, and my symptoms weren’t anything like theirs. Still, I took the pills she prescribed. And I got worse. Sigh.

At last my rheumatologist suggested I should get tested for Celiac. In hindsight, I can’t believe no one suggested it sooner! I have classic symptoms. It even took my rheumatologist a while – I’d been seeing her for several years when she brought it up. I resisted, of course. I didn’t want to give up my favorite foods. And I was scared. Anything with food was scary, since I was so sick so much of time. Still, I might have let her run the test. If only she could. Her department didn’t let her run any tests that weren’t part of her specialty. The computer system didn’t even offer it as an option! She could run my blood count and ANA every day of the week, but no Celiac tests.

On the bright side, she put the idea in my head. That meant I was more open to it several years later when I was doing hypothyroid research and came across the link between Hashimoto’s Disease (autoimmune hypothyroid) and Celiac Disease. Many Hashi’s patients have Celiac or gluten intolerance, so some professionals recommend a gluten free diet. Hmm. It made sense. After reading that same advice from several different sources and thinking about my symptoms, I knew I had to give it a try.

I talked to my new PCP (primary care physician), who didn’t think I needed to worry about it. She hadn’t heard of the link and seemed doubtful about the research I had come across. She dismissed my symptoms as being IBS. Going gluten free was the new fad diet. I told her I wasn’t doing it as a trend or to lose weight. I pushed her, and she gave me the necessary referral to see a nutritionist. She didn’t run any tests.

The nutritionist took me seriously. She gave me useful information. I was on my way.

I knew that if it worked, I’d have to eat gluten again in order to be diagnosed. I was looking forward to it; I’d get to eat my favorite foods again for weeks! How great! You see, after being gluten free for a while the antibodies die down and the intestine heals, so there’s no way to run an accurate test. The only way is to eat gluten again. The better way is to be tested before going off gluten in the first place.

Eating gluten sounded great at first, but something changed. I stopped feeling nauseated every day. My diarrhea almost completely disappeared. The cramps were gone. The gas and bloating went away. The pain that put me in agony, pondering if death would be better, was no longer a weekly or bi-weekly occurrence. I was free! I could live! I could go to the park for the day without worrying about not being near a bathroom! I could join friends for meals without worrying about being sick for hours afterwards!

Yes, I occasionally get glutened and it’s all kinds of horrible. That pain and nausea and diarrhea all return with a vengeance, but at least I know that it’s temporary. The worst of it lasts a few hours, and the lesser symptoms linger for a few days. I know from experience that it could be so much worse. And most days, I don’t have any of that! I’m grateful every single day that those symptoms are gone.

It hasn’t been easy. Eating out is all kinds of challenging now. But it’s completely worth it. It’s so worth it, that I have no desire to eat gluten for even one day, never mind for the weeks that would be required for testing. I’m incredibly careful to avoid even a tiny amount of accidental exposure. I’m not about to do it intentionally. So I remain untested. Maybe I have gluten intolerance. Maybe I have Celiac Disease. Does it matter? Either way, I’ll be avoiding gluten. (And yes, the difference matters because of secondary issues, but I’m still not going to get tested.)

Unfortunately, though, damage has been done. After what I suspect was 18 years of undiagnosed Celiac Disease, I got pretty damn sick. I’ve been reading about how some researchers believe untreated Celiac can lead to Hashimoto’s Disease, which I developed. Hmm. And we know that my poorly treated Hashimoto’s led to adrenal insufficiency. And that led to me having to leave work. I don’t think untreated Celiac caused all of my health problems, but it sure led to a lot of them.

I try hard not to dwell on the “what ifs” in life, because it doesn’t help. Still, from time to time, I wonder what would have happened if that first doctor had taken me seriously 20 years ago. Could I have avoided most of this?

Or course, there’s also the flip side: what if I had listened to my doctors and believed that my problems had nothing to do with gluten? How much sicker would I be right now?


I make no apologies

May 19, 2015

Yesterday I wrote about how my entire personality changed because of my need to stand up for myself in medical situations. I want to be clear about one thing: I make no apologies for how I act.

Sometimes I’m wrong. Sometimes I screw up. I’m human, so of course I do things wrong. I try to take ownership and apologize when I’m at fault. Sometimes I screw that up, too, but I do my best. I’m not talking here about any of those things. I’m talking about medical situations where I’m pushy.

Like many of you, I was taught to be apologetic when I push too hard, but I only apologize when I truly cross a line. The rest of the time, I do what I need to do without apology, because if I apologize, then it encourages their low standards.

A couple years ago I had an appointment with a specialist. I waited almost 6 months for the appointment, but it was worth it so that I could see this particular doctor. When I finally showed up, I was taken in 30 minutes late to meet with someone else. My doctor was out and instead of calling and asking if I’d like to reschedule, they had me meet with this one. He was terrible. He said they couldn’t help me and suggested a psychologist. Before I left, I got the name of the person in charge. I called her and expressed my displeasure at the long wait and not being able to see the doctor I had been desperate to see. I was very strong in my expression of displeasure. I was not mean or nasty, I did not swear, but I was strong. Within a week she got me an appointment to see that doctor. Instead of the usual 15 minutes, he spent a full hour with me. Unlike the other, he discussed options, asked my opinion, took my view serious, and ran tests. He found that I had a serious but treatable problem. I called back the woman in charge, told her how well things went, and thanked her profusely. I certainly never apologized.

I asked my doctor to test me for lactose intolerance. He said there was no test for it, but that I should keep a food and symptom journal and he’d send it to a nutritionist. We did that, and he told me that nutritionist said I’m not lactose intolerant and I should just avoid foods that bother me. It didn’t feel right, but I went along with him. After 20 years of frequent diarrhea, nausea, cramping, and pain so bad that I literally wanted to die, I found out that I had Celiac Disease. Last year I was going through old medical records and found the letter the nutritionist had sent back to him. She said that I didn’t appear to be lactose intolerant but that something was definitely wrong and I should see her. I’ve been very sorry about that – sorry that I didn’t push for better treatment.

I have dozens, probably hundreds, of stories like these. I bet you do, too. I regret the times I didn’t stand up for myself but I haven’t once regretted the times that I did. So I’ll make no apologies. And if anyone has a problem with that, too bad for them.

P.S. If I sound defensive and bitter, you can imagine why.

Now it’s your turn. Have you had to be pushy in order to stand up for yourself? Did you regret doing it? Did you regret not doing it? Share one or two of your favorite stories in the comments!


The real reason I became loud and pushy: self-preservation

May 18, 2015

We’re taught to be polite. We’re taught to be respectful. But what happens when being polite and respectful is killing you?

I mentioned to some friends recently that I didn’t used to be loud and pushy. In fact, I was quiet and rather meek for a long time. They were shocked. If you’re a long time reader, you might be surprised, too. They couldn’t imagine me ever being shy about speaking my mind. But they didn’t know me before.

I was a shy child. When an adult, even a well known friend of my parents, spoke to me, I would hide behind my mother’s legs. I got past that, as children do, but I was always shy about expressing my opinions. I hated raising my hand in class, even when I knew I had the right answer. Bit by bit I started raising my hand and volunteering thoughts and ideas. Still, I was never pushy about it. I would tell my boss what I thought, then go with whatever he decided.

There was no one moment when that changed. It was a gradual thing that snuck up on me over time. Then one day, someone else brought up the need to be pushy with doctors, and I had a sudden flash back to the days when I was timid, and I realized I wasn’t like that any more.

I was a child when I had my first symptoms, so I did what my parents and my doctors said to do. It was always some combination of Advil, heat, ice, support braces, etc. None of it worked. Still, complaining made things worse. I learned early on that if I was too insistent about things, I’d be ignored. I was lucky that my parents never ignored me, but certain doctors and teachers did. Several openly suggested I was making the whole thing up.

As I became an adult, I still wasn’t taken seriously. And even when the doctors took me seriously, I still received poor care. I got shuttled between doctors within an insurance-induced maze and continued to get worse and worse. I was told not to come in any more. I learned to speak up for myself in college, where the disability support services were horribly lacking. I pushed for what I needed to succeed in class, but only within the strict bounds of cultural politeness.

In my early 20s I had an unusual ability to see a doctor of my choosing for a short time. I won’t get into the insurance loophole, but I found it and used it. For the first time, I took things into my own hands against the advice of my doctors. And for the first time in 11 years, I got a diagnosis. That was my first taste of how going against the grain could help me.

Somewhere in my late 20s or early 30s, I started to stand up for myself more. When doctors would bend my hand and ask, “Does this hurt?” and I said yes, they would still try to do it again, but unlike a decade before, I pulled away. I argued with insurance representatives, even when it did no good. I tried to get better care. I was still being polite most of the time, but I was pushing that boundary more and more.

Around this time, my health took a dive. The doctors said they couldn’t do anything. I knew I had to take over. If I didn’t, what would become of me? If that wasn’t enough, I was fighting with a disability insurance company and with social security for benefits that I knew I deserved. It felt like my life was falling apart. It was do or die, probably literally. So I did. In an effort for self-preservation, I stood up for myself. When a doctor didn’t want to run a test, I asked why. When they gave a reason, I debated, using the facts I had learned through my own research. When my primary care physician didn’t want to give me a referral to a specialist I suspected could help (and he later did!), I switched doctors. I interviewed doctors at the first appointment to see if I would stay with them. I asked for more tests, more treatments, more of everything that I thought could possibly help me. I was polite when that seemed to be the most likely way to get what I wanted, and I was rude when that seemed the better way to get what I wanted. I argued, pleaded, and even yelled. I stopped short of becoming abusive, but otherwise, I pushed hard.

Pushiness has carried over into other parts of my life. I’m sure some people find it annoying. Others find my forthrightness refreshing. I find it necessary.

I don’t know when being pushy became my default setting, but it did. And it probably saved my life. It’s not the best route for everyone, but for me it was the only way I could find.


What to do when the medication is gone?

May 13, 2015

Like many people with autoimmune diseases, I have a lot of overlapping conditions and many symptoms. My most limiting and disabling symptom right now is fatigue. The fatigue is caused by several things, among them strained adrenal glands. There have been just two things that have helped the fatigue, and I may lose both. Then what will I do?!

First, I have a form of sleep apnea. I got a CPAP machine that helped a lot!!! I loved that thing! Unfortunately, I 2014-04-23 11.03.16
developed a complication and now I can only use it for about an hour every other night. Don’t even get me started on the frustration with that! I’m still working with my sleep doctor on that, but he admits there are limited options for this particular issue, so I may just be stuck. Treating my sleep apnea would help a lot, and might be good enough that I wouldn’t need the other thing that’s worked.

The other thing is an over-the-counter supplement called Isocort, made to support the adrenal glands. It’s been amazing for me! A tiny pill or two makes me able to function fairly well every day! Sure, I’m not about to go jogging, get a job, or clean the apartment, but I can run errands, socialize, and just feel ok. I love it! Unfortunately, they stopped making it. When they stopped, patient communities online were very upset. It was the go-to nonprescription solution for adrenal insufficiency. The prescription solution is a steroid, which causes all sorts of problems for many of us. When production stopped, everyone floundered. They found alternatives with varying success. I tried a form of the most popular alternative. It helps a bit, but not at all like the Isocort did.

I now have a 4-6 month supply of Isocort left. And then what? Will I have to go back to feeling that constant strain to function?

So now I feel stuck. I have some more options, but they feel unlikely to work at best. If Isocort was still in production I wouldn’t be worried. Sure, I wouldn’t want to be on it for the rest of my life for various reasons, but I’d be glad to use it for a few years if it helped. Oh, if only!

I’ll try more Isocort alternatives. I’ll keep working with the sleep doctor. But what will I do if they all fail?


Is it possible to rent an apartment near Boston with a therapy dog?

May 6, 2015

I have always wanted a dog. I grew up with a dog, and ever since he died when I was 11 years old, I’ve wanted another.

3-27-2015 4-01-42 PM

Sometimes I’m lucky enough to get to babysit for this cutie!

In my 20s I knew I didn’t have the right lifestyle for a dog. I worked long hours and traveled a lot and, if I’m being honest, the truth is that I just wasn’t ready for the responsibility. Then when I got so sick I had to leave my job, I was home a lot. I stopped traveling. But I was so sick that I could barely take care of myself, never mind another being.

Now it’s different. I’m still too sick to work, but I’m doing a lot better. I’m more stable. I’m taking care of myself ok. And I really really really want a dog. I ache to have a dog. Literally. When friends talk about their dogs, I ache to be in their shoes. When friends post photos on Facebook of dogs that need adoption, I ache to take those dogs home. I’m so ready to have a dog. And I’ve been mostly sure I could handle taking care of a dog, except for the walking part. Dogs need exercise, but some need more than others. I could get a dog that doesn’t need much exercise. I’ve been working hard at walking most days, and I’m taking short walks about 6 days a week! (Woo hoo! Those of you who’ve been reading this blog for a while know how big this is!) But dogs need to pee and poop more than once a day.

So I felt there were three big obstacles to me getting a dog:
1) Walking.
2) Money.
3) My landlord.

Then something changed. I was talking to a friend this week about how much I want a dog and my concerns about walks, and she suggested training one to use a litter box. Many people have suggested that, but it sounds ridiculous. The thing is, she did it! She had a dog that used a litter box! She also had a friend who did it. So maybe it wasn’t that ridiculous after all? I looked it up online and found some great resources. There’s even special litter for dogs! This totally solves problem #1!!!

Now, let’s assume I can handle the money aspects. Those are a real concern, but I’m working on them.

That leaves my landlord as the final obstacle, and I can’t imagine how I can possibly overcome that problem. You see, Boston is a pricey city. (When I say “Boston” I mean the neighboring towns, too. Just fyi.) There’s also a very low rental vacancy rate. This means that rents are high and landlords have a lot of power. I won’t get into all the details of the effects of the Recession on the housing market, etc. Just believe me when I say this is a tough place to be a renter. And the vast majority of landlords don’t allow dogs. Including mine. (My landlord doesn’t allow cats, either. And I believe birds are also off limits.)

Remember back in February when I said I was looking for an apartment? Well I did. I looked. And I gave up. I’ve been in my current place for many years, and my landlord hasn’t been raising my rent as much as they could. I pay a lot less than new tenants in my building. So even though I was looking in a less expensive area (where I’d rather live anyway) I couldn’t find anyplace as nice as mine. And I wasn’t even looking for a place that allowed dogs!

“Wait, what if it was a therapy dog?” you might ask. A lot of people have asked that. And yes, by law all landlords have to allow therapy pets. I would have no trouble getting my doctor to write the necessary letter. In fact, she has previously said that I should consider getting a pet because it would help me. So let’s assume I got the letter and I had a therapy pet. Now by law my landlord can’t kick me out, right? Sure, but they can “forget” to fix things in a timely manner. And when my lease comes up for renewal, they can raise my rent to what my neighbors pay – $300 a month more! I wouldn’t be able to claim discrimination if others pay that much. And future landlords might be just as difficult…. if I could even find a new place to live! Remember, I already looked at apartments last winter. Yes, there were places, but do I really want to live someplace smaller, darker, and louder just so I can have a dog? I’m not sure.And what if that place didn’t work out either? I really don’t want to move constantly.

So now I’m wondering, what’s the reality of living with a therapy dog when you rent an apartment? Do landlords retaliate? Or do they actually accommodate you the way they should? I know that no one person can speak for all landlords, but I would really love to hear about people’s experiences to find out if this is even possible. If you have a therapy dog and you rent an apartment, how has it been for you?


There’s no cure for me and you need to accept that

April 29, 2015

It used to happen more often. A well-meaning family member or friend would mention something about a cure “one day” and about me staying hopeful. Over time, those comments gradually ceased. I made it clear I didn’t want to hear it and they probably began to accept that it was unlikely.

Last week, though, a well-meaning relative made one of those comments. I was caught off guard, since I hadn’t heard it in so long. I tried to explain there won’t be a cure. In fact, no one is even researching a cure right now! And even if they were, and even if they were on the right track, it would be a long time before that cure was commercially available. Hell, few of my conditions are even being researched for potential treatments, never mind cures! But he kept trying to say it could happen, I couldn’t be sure, it was possible, etc.

Now here’s the thing about hoping for a cure: it makes the other person feel better. They can see how poorly I’m doing at a given time, and think that one day down the road I’ll be better, and it comforts them. I get that. And if they want to believe it, they can go ahead. What I don’t want is for them to discuss it with me. If I believed there was a cure coming then yes, I might be comforted, but I don’t.

My pain started when I was a kid. For many years my family, friends, and doctors told me that it would be ok, that I would get better, that the pain would go away. It didn’t. It’s been more than 2 decades and the pain is even more prevalent now than it was then, plus I have even more symptoms. “It will be ok” became a lie to my ears. I couldn’t believe it any more. I still don’t.

So talking about a cure isn’t helpful for me. Yes, I admit there might be a cure in 20, 30, or 40 years. But in the near future, no, there won’t be a cure. I’ve come to terms with that. I’m ok with it. Well, sure, I’m not thrilled. Yes, I want to feel better and travel and ride a bike, and pick up my nieces and nephews and do all those other joys in life that I can’t do any more. But I have accepted my reality. Now I just need everyone else to accept it. Or to at least not talk about cures when I’m around.


Should I write a book?

April 27, 2015

For a couple of years now, several friends have been trying to convince me to write a book about my experiences. I’ve been tempted, but only in a mildly curious way. After yesterday’s frustrating incident, I suddenly really wanted to write a book. The question is, what’s the point?

Blogging is one thing. It’s short little snippets. It’s free for me to do and free for you to read. It isn’t too time consuming for any of us. The topics vary. If I write a book, it would be a huge effort. It would have many pages, maybe a couple of chapters, devoted to the horrendous long term disability and social security processes. It would have chapters about insensitive doctors and ignorant acquaintances. It would explain what the symptoms feel like and the fear and frustration that come with them. I’d put it all in there.

So should I do it? I’m wondering if this would be of any use to anyone. While my ego would love having a book published in my name, I really don’t want to do it unless it would help someone. I’m not sure if it would. What do you think? Let me know in the comments, or email me at msrants at gmail.com or tweet me @CIRants and let me know your thoughts. If it’s a good idea, tell me why. If it’s a bad idea, tell me why. I don’t get offended easily, so go ahead and be honest.

I’ll keep writing here either way. I love this blog and the small community on here. I love the readers who comment. I love getting to know people. So this blog won’t be going away any time soon.

Thanks in advance for your opinions and advice!!


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