September kicked my ass

September 29, 2014

Here’s the thing about chronic illness: it’s unpredictable.

And here’s the thing about life: it too is unpredictable.

And sometimes the unpredictable chronic illness shit coincides with the unpredictable life shit.

That’s what happened to me. That’s why this blog has been so quiet lately. And that’s why September kicked my ass.

It started with my typical CI issues flaring up. Then I had a surprise when I had an unusually large amount of blood drawn and I got light-headed and started to black out. Bad pain made everything a bit worse. The fatigue was really horrible. A sleep study stressed me out. I had to chase doctors more than usual. I had insurance-related financial worries. I had a looming deadline to send in the paperwork for my SNAP (formerly food stamps) application. And then, just when I was completely overwhelmed, a loved one died. I was devastated. I was stressed out. I was running around trying to be with family, attend the funeral, sit shiva, and help clear out his apartment. As you can imagine, my stress, fatigue, pain, and nausea all got even worse.

Now, September wasn’t all bad. I started dating someone and things are going really well. I’m processing my grief. The sleep study went well. The symptoms have been improving. Still, it wasn’t my favorite time. I mean, I wasn’t even blogging regularly! That tells you just how badly the month had gone!

October is just a couple days away, and I’m hopeful that it will be a better month. I’m starting a new sleep apnea treatment, I’ll continue dating the guy, I hope to find time to cook, and the transition to autumn that was probably responsible for a lot of my September symptoms will be complete. It won’t be perfect, but surly it must be better?

The thing about chronic illness is that, like life, there are ups and there are downs. September gave me more than my share of downs. Now I’m really hoping for some ups! So screw you, September! I’m moving on, to bigger and better things!

7 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

Health insurance should cover a bidet for anyone with a GI illness

September 21, 2014

Sometimes things get messy… down there. It happens. And when you have diarrhea on a regular basis, including explosive diarrhea, maybe it happens a bit more than healthy folks might expect.

As recent readers know, the last few weeks have been especially difficult for me. Still, I’ve been pushing through. I was doing ok, but the last few days have been incredibly rough.

And so I wasn’t feeling great this morning as I read my Facebook feed and slowly ate my breakfast. The stress was getting to me. I’d barely the last 3 nights. I was pretty sure I was all cried out…. at least until the funeral tomorrow. Who knows what that would bring. And how would I make it through the day? The funeral, sitting shiva, the long drives…. would I make it? I tried not to worry about getting over to be with the family again today, figuring I could rest all morning and afternoon and head over much later. I wouldn’t even get dressed, just stay in my pajamas until 3pm. I tried not to think about it. I tried not to think about how my grandfather looked when I visited him on his deathbed less than 48 hours ago. I tried not to think about the hell that my mother and her siblings were going through. I tried to remember the good times. And there were so many good times. I am endlessly thankful for that.

I sat there feeling pretty good emotionally, all things considered. I was hanging in there physically. I was doing ok. I was going to make it. And then instead of feeling gas released by a fart, I felt poop. Yes, I was pooping my pants. This has happened a couple of times before, but with all of my recent improvements GI-wise, I thought it wouldn’t happen again. But it did.

I bolted from the chair and ran for the bathroom. I took just a couple steps and realized the room was fuzzy. One part of my brain knew the problem, and of its own accord my hand reached up, pulled off my reading glasses, and threw them down. I never broke stride. I made it to the bathroom. Most of it ended up in the toilet. It was just liquid. I felt weaker than before, but I managed to wash out my favorite underwear (how unfortunate!) and my favorite fleece pants (just as unfortunate!) but my ass still wasn’t entirely clean. Things had gotten messy, and thanks to my joint problems in my hands, wrists, and shoulders, it was hard to clean up. Worse than what I usually have trouble cleaning up. So I got in the shower.

I stood in that shower for a long, long time. I hadn’t wanted to shower so early, or maybe even at all today. Showering takes so much energy, and that wasn’t energy that I had to spare. But what were my options? So I stood in that shower and thought, not for the first time, about how much I wish I had a bidet. I used one once when I was in Europe and I liked it. I’m pretty sure if I had one now, I’d be using it often. There are so many days when it would help, but few as bad as today.

We don’t talk about this kind of thing often. But a few weeks ago I was talking to a friend who also has GI problems and we talked about those uncertain farts, and how we can never be sure if they’ll really be farts, or if we’ll end up pooping our pants. I was relieved to hear I wasn’t the only one dealing with that, but sad for her that she has the same problem. And why shouldn’t we discuss it? Yesterday, after hearing about my grandfather’s death, I stood in the shower and cried – sobbed, actually – for ages. I felt my nose start to bleed, but I only stopped crying when I felt myself choking on the blood. By the time I got out of the shower I’d forgotten about my bloody nose until I brushed my teeth. I looked in the mirror and saw the blood dripping down. And I feel like I can talk about that, so why not talk about gastrointestinal problems?

So I’m throwing it out there right now, so all of my fellow CI-ers can remember that if you have similar problems, or maybe something entirely different that you find embarrassing, you’re not alone. We all have our stories. We might not talk about them publicly, but we have them.

And if you’re looking for a safe space to share your own otherwise-embarrassing stories, just post them here in the comments. I won’t judge. (And you can use an anonymous name if you want.) Remember, you’re among friends. And at least a few of them have pooped their pants.

15 Comments | Expectations, Fatigue, Gastrointestinal, Isolation, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , , , , | Permalink
Posted by chronicrants

Are doctors actually helpful?

August 4, 2014

A friend started medical school today. I bit my tongue. I wanted so badly to ask what he actually hopes to accomplish by being a doctor. Does he really think he’ll help people? Because I’m not so sure.

Ok, to be fair, some doctors are helpful. If I had cancer, I’d probably want to see a doctor. Ditto if I had a heart attack. Some of them are useful. Just not the ones I’ve seen.

The other day I posted about doing some genetic testing. I wanted to see if I had a mutation on the MTHFR gene. I had asked my primary care doctor for the test, but he said they prefer to run an MMA test to check enzyme levels. If that test is abnormal, then they run the other. This sounds logical except for 1 glaring fact: the MTHFR mutation doesn’t reduce the number of enzymes, it reduces their efficacy! So I have the right number of enzymes, but they only function at about 30% of what they should! So the MMA test was normal. But the test I chose to pay for and run on my own shows that I have the mutation afterall (the A1298C mutation, for those who are interested) and it’s homozygous, meaning I have the mutation from both parents. If I had listened to my doctor, I’d never have known.

Last week I posted about my frustrations with indicative lab results from years ago that I just discovered. Of course, that was just one example. I have found many lab tests that showed important keys to my health problems and that, if they’d been addressed, could have helped to prevent my current level of poor health. The doctors knew enough to run the tests, but not to address the results!

There was the doctor who told me that there was nothing to be done for my pain, that I’d seen plenty of good doctors, and that I should just learn to live with it and stop seeking medical treatment. I was 19. And I stupidly took his advice for several years.

There was the doctor who told me I wasn’t lactose intolerant. He didn’t suggest doing anything to help me with my constant digestive problems, he just said that I wasn’t lactose intolerant. I was young and intimidated and scared and didn’t push him. Going through medical records last night, I found the note from the specialist he had consulted. She had suggested further testing and potential causes for my problems. He never did any of those tests or followed up in any way. It took another 12 years, 3 gastroenterologists, 1 naturopath, and a lot of my own research to figure out I had leaky gut, Celiac Disease, and IBS.

A pediatric surgeon told me that the Olympic gymnasts (the Olympics were currently taking place) managed to compete with worse pain than I had so I shouldn’t be so upset by it. I was 16. I drove right to my best friend’s house and cried.\

When my fatigue stuck around long after my mono was gone, my doctor kept telling me to give it more time. She kept insisting I’d get better in a few more months. I never did. She never once considered that the mono virus triggered an autoimmune condition, even though that’s a well known possibility. It took another 10 years before I figured out that connection.

I can’t count how many times I asked for tests that doctors said were unnecessary, only to later find out that I did indeed have the things I wanted to test for.

I told a doctor that I felt instinctively that my wrist pain, back pain, and knee pain were all related. He insisted I was wrong. It took many years to find out I was right.

The doctor who first diagnosed me with an autoimmune condition ordered an ANA test. Then he flipped through the huge stack of medical records I had given him and found two previous ANA tests that were both high. They weren’t high enough for a diagnosis, but they were high enough that they should have been flagged. They weren’t. I should have been retested regularly. I wasn’t. I have no idea if more than those two were run. Of course, his test came back incredibly high and I got the diagnosis that week. I’d had symptoms for 11 years. That was already more than 11 years ago, and I’m still getting more diagnoses.

*****

Ok, you’re probably wondering what the point of this post is. I started with something else in mind and it has turned into a rant, and I’m ok with that. These days I’m feeling unusually frustrated and angry about my past health care. So I’m letting it out. And I hope that maybe this somehow falls into the hands of a medical school curriculum designer who can start making the necessary changes to doctors’ training. Because some of us don’t fall into the neat boxes that doctors are trained to search out. Some of us have messy health problems. And we deserve the same great care as the people who fall into those neat boxes.

There are some fantastic doctors out there. I’ve had one or two of them. And I hope my friend becomes another one. But I remain weary. I see doctors because I must. I see doctors because I want my lab tests paid for by insurance, because I need prescriptions and would rather get them legally, and because occasionally they are able to help me with a simpler problem. But I’m continuing to do my own research. I’m continuing to be vigilant. And I’m continuing to be distrustful. And after reading just a few of the many ways I’ve been screwed over, can you blame me?

Please add your own story in the comments. Vent a little and get it out of your system!

8 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Limitations, Medication, Pain, Rants, Symptoms | Tagged: , | Permalink
Posted by chronicrants

What I really mean when I say “I don’t mind”

July 16, 2014

Many of us project our feelings onto other people. I hate mushrooms, so you must also hate mushrooms. I would love to go to Europe, so I’m sure that guy over there wants to go to Europe. It happens a lot. But when it comes to my health issues, it bothers me when people not only project their own feelings onto me, but then don’t accept my corrections.

I try to be polite and not complain about things. So sure, maybe I won’t say if something is bothering me. But I don’t lie. So if I say that something doesn’t bother me, then it does. If I say that it does, then it does. Simple, right? You would think so. But you’d be wrong.

I went to a wedding this weekend. Of course my health problems limited me and altered my activity a lot. Some things I minded and some I didn’t. I minded having to leave the rehearsal dinner early. I minded not being able to walk around the city more during my free time. I minded not being able to dance at the wedding. I minded having a racing heart and horrible nausea for several hours one night. I minded leaving the wedding early. I minded the pain I was in. I minded a lot.

What I didn’t mind was the food.

It’s not like I expected to eat the way everyone else ate. I made it clear to the bride and groom that I was very appreciative of their accommodations for my diet. They got me special meals that I could eat. It was fantastic of them. They weren’t the problem. It was others.

I spent too much time at the rehearsal dinner answering my table-mates questions about my special meal. They kept expressing concern that I couldn’t eat this or that, and I kept saying that I didn’t mind. Then the same thing happened at the wedding itself with different table-mates. I wanted to just talk about normal things, and instead I answered all sorts of questions about what it means to be gluten-free, how I handle it, etc. Again, they felt bad I couldn’t eat all of the rolls, desserts, and other foods. Again, I assured them that I didn’t mind.

Because I didn’t mind!

Food is important to many people, and I don’t just mean as a source of nutrition that keeps us alive. People have emotional associations with food. People think food is terribly important. I’ve gotten sick off of food for about 20 years now, so I would be happy to never eat again if there were pills I could take instead. I have some positive associations with food, but more negative ones. And even if I really do want to eat something, I want to not feel sick even more. I don’t feel like I’m “missing out” when I avoid eating something, as long as I can eat something else then or soon after.

But too often, people don’t believe me. They think I’m just being polite. They think I’m downplaying my despair at not being able to eat the same food that they eat. I wrote about this a while back with “The oh-I-could-never-do-that response” and this disbelief is just a projection of that feeling. Apparently many people can’t imagine that anything could ever be more terrible than missing out on, say, a piece of wedding cake, and so they express sympathy, because eating cake is so important to them. As if missing it is the most horrible thing happening in my life. I wish.

So for all of you out there, the next time someone says they don’t mind missing out on something because of their health, consider the possibility, just for a moment, that they mean what they say. Consider that some things just aren’t as important to them as they are to you. Because maybe, just maybe, that’s the truth.

What about you? Have you had someone doubt you when you say you don’t mind missing something? Do you get frustrated when you say you have to miss something and your needs aren’t respected? Is it difficult to explain why you mind missing some things and not others? Please share in the comments!

3 Comments | Educating, Expectations, Frustration, Gastrointestinal, Limitations, Pain, Rants, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

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