How dare insurance not cover my specialists

March 27, 2018

24 years. If I’m remembering correctly, I have had gastrointestinal problems for 24 years.

First it was ignored. I didn’t think to tell anyone. And I didn’t know that diarrhea wasn’t normal, that not pooping for days at a time wasn’t normal, that nausea and pain weren’t normal. So I suffered in silence.

Then I saw a doctor who wasn’t helpful. I drank prune juice for the constipation and that got me through the worse of it. Sort of.

Another doctor said I had IBS and gave me a prescription.

Years later I went off gluten, then a bunch of other foods. That helped a lot. The episodes that had been coming more frequently backed off. I no longer found myself in the fetal position from gastrointestinal pain 3-5 times a week. Now it was only 1-4 times a month. Only. Hmm.

The problem was, the episodes continued, and my emotional response to them got worse. I found myself thinking more and more often about how I would prefer death. I only thought that way in the middle of the episodes, when I am already in too much pain to seriously consider killing myself anyway, but still, that’s not good.

I never think about death when I have joint pain, even though that pain is much worse. There is something about the nausea that triggers these thoughts now.

Recently I had an episode that was especially bad. I called a friend and neighbor, who came right over. But even his dog, who he kindly brought, wasn’t enough to help me. I sobbed while curled up on the floor, unable to sit up, unable to think clearly, but knowing I needed to not be alone. Eventually the worst of it subsided. But it was enough.

After that, I finally decided to pay the money for the stool test that had been recommended to me. When I saw my doctor the next week, I was shocked to learn that the test was actually covered by insurance! Wow! I took it home, read the instructions, and realized I needed to go off of a couple of my supplements for 2 weeks before I could take the test. So I waited. And waited. And finally it was time, but my joints were acting up and I just didn’t have the mental bandwidth to manage the pain and the test at the same time.

And then, finally, I took the test. For 3 days I scooped poop into a cup. Joy oh joy. But I did it.

It took time for the company to process the test. Then more time for my doctor to get the results, and for the results to be sent to me. But now, finally, months later, I have the results!

And I have no fucking clue what to do with them.

Some aspects of my gut are in balance, others are not. My doctor was honest: there was nothing he could suggest except to take a probiotic (which I already take, but which I had to stop taking for several weeks before the test) and so he wanted me to see someone with more expertise. I appreciate his honesty. That’s why I see him.

There’s just one problem. He recommended 2 different practitioners. And neither are covered by my insurance. At all. Not one penny.

So now I’m considering paying. The one who looks more promising based on her experience is $217 for the first visit and $188 for each followup. I have no idea how many visits I’ll need.

I have the money. And to be honest, if I’m going to spend money, this is a good thing to spend it on. I save as much as I can these days, but really, why am I saving it? To take care of myself. And if I can fix this problem, avoid these episodes from now on, why wouldn’t I do it?

So once again, I am going to pay out of pocket for my healthcare. My insurance is fabulous when it covers my care. But when it doesn’t, I question what is wrong with our system. No one would question that I need help. There is obviously something very wrong. I have limited my diet, tried pills, and followed doctors’ orders. And yet, I still have episodes that have me curled on the floor thinking that death might not be so bad. I need help. And I am so incredibly lucky that I can afford to pay for it.

What if I was one of the ones who couldn’t?

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It takes skill to injury yourself the way I do

March 27, 2018

The other day I woke up to find that I had wrenched my shoulder in my sleep. It felt like it was partially dislocated. Sometimes it felt fine, and then I’d try to put on a shirt or reach for something and there’d be searing pain. I didn’t fall. I didn’t pick up something heavy. I slept wrong.

Everyone hurts themselves from time to time. A stubbed toe or a paper cut are the hazards of daily life. No big deal. But then there’s this other level that shows up when your body is out of whack. Being out of whack makes me more prone to these kinds of injuries, and sometimes they make no sense.

Like the time I wiggled my toes and injured a tendon. That was a month ago. It still hurts.

I’m skilled, I tell you. Totally skilled. I mean, it’s not the average person who could give themselves a long term toe tendon injury, with daily pain, just by wiggling their toes!

And do I go to the doctor for any of these injuries? No. Of course not. Because I’d be going All. The. Time!

Don’t get me wrong. I do take big things seriously. When I dropped a chef’s knife on my foot a couple years ago, I went to the emergency room for stitches, and later had surgery.

But no, I don’t see a doctor for every injury. Just like I don’t see a doctor for every new gastrointestinal symptom or new pain or new type of fatigue. What’s the point?

So I’m waiting these out, hoping they’ll eventually go away on their own. They often do. Like the time I finally went to the doctor for the unmistakable nerve pain, to be told I had a pinched nerve and should go to physical therapy. I didn’t have time. I asked if not going would cause long term damage. She said no. So I didn’t go. Eventually it fixed itself. If it hadn’t, I’d have gone.

So many of us have far too many medical issues already, so we try to ignore the little ones. But it sure would be easier to ignore them if we weren’t so skilled at creating new ones constantly!


Self care goes a long way

March 21, 2018

I have to try harder. All the time. It feels like nothing I do is ever going to be enough. Sometimes it’s my body limiting me. Sometimes it’s fear. Sometimes it’s emotions. But I always feel like I need to do more.

That’s why it’s so hard to slow down.

On the days that I’m in too much pain to walk, I’m forced to stay off my feet. When my energy is low, I’m forced to be at home. But I still try to wash dishes or read or do something useful. But who defines what’s “useful”? Sometimes, the most useful thing is to take care of myself.

A few weeks ago I was very stressed out. I have had years to get used to taking care of myself physically, but taking care of myself emotionally was much harder. Because I had to focus on my feelings. I couldn’t do anything tangible to take care of myself. Physically I felt like I should be doing more, but I knew I needed to deal with my emotions.

So I did. For a few days I wrote in a journal, watched movies that I knew would trigger the feelings I was avoiding, and stopped myself from the automatic distraction mode I’m so used to engaging in. Slowly, it worked. I dealt with my feelings. It’s still an ongoing process, but I feel like myself again, and things are better.

It’s easy to always feel like we’re never doing enough. Especially for those of us who are too sick to work full time and do the other things that society expects. But we need to remember that self-care is important, too. Yes, we need to have balance. Dishes must be washed, clothes must be cleaned, groceries must be bought. But we also need to take care of ourselves on every level.

This isn’t new to me, but it’s an ongoing lesson that I am constantly striving to learn. I think that many of us are.


The stress of dealing with stress

March 12, 2018

When the doctor told me I needed to avoid stress because of my autoimmune disease, I laughed to myself. If it was that easy, wouldn’t everyone do it?

But over the years I learned how to stress out less. I’m still Type A. I’m still controlling, But I managed it. I get stressed out in more reasonable ways. It doesn’t feel as extreme as it used to, or last very long. I almost never lose sleep.

Until this month.

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The last few weeks have been really rough. I have been struggling a lot. And finally yesterday, I just felt so frustrated by it all. I wasn’t sure what to do. I called a friend who also has chronic illness, because I felt stuck. I wanted to stay home and rest and be alone. But I had already done that several times in the last week and it didn’t help. So was it fair to cancel plans with a new friend?

She helped me realize that I did need to stay home and take care of myself. And that while spending a day watching tv and crocheting will help me when I’m physically exhausted, it’s not enough for my current anxiety and stress. Emotional issues require a different approach.

She suggested a journaling exercise: write for 10 minutes without stopping. Make it a stream-of-consciousness writing exercise, and do it for 4 days. The key is not to write about *what* is causing me stress but to write about *how* it makes me feel. That’s harder. I’m not good at that.

But the minute we hung up the phone, I set my timing and got started.

Within a few minutes I was crying. It was wonderful! You see, my problem is that I have gotten so good at compartmentalizing my feelings when I need to, that I’m doing it even when I shouldn’t. Like right now. For the past week I have felt like I needed to cry, but I couldn’t. I knew it would help me feel better, but I couldn’t do it. I tried cutting onions. I shed some tears, but it wasn’t a real cry. I watched a sad movie. Again, I shed tears, but it wasn’t the sobfest that I really needed. It wasn’t enough.

But the journaling exercise got me to cry. Then I got in the shower and cried more. Seriously cried. It didn’t last long, but I had tears streaming down my face and snot running out of my nose and it felt good. Cleansing.

I need to cry more. Maybe today’s journaling will help. Maybe not. But it’s worth a try.

We’re taught not to cry. Crying is bad. Not crying shows strength. I am proud of the fact that I almost never cry. I feel embarrassed when I do cry. But why? It’s a natural expression of emotions. What’s wrong with that?

My health issues also bring up a lot of negative feelings. I usually deal with them by setting them aside while they’re raw, then dealing with them a bit later when they aren’t quite as strong. That works for me.

The problem is that it stopped working. At least in this case. A few weeks ago my girlfriend and I broke up. We weren’t together long, which was part of the problem: it made me feel like I didn’t have the right to be upset. But I was. This relationship was different. I thought it would last a long time. So did she. The breakup itself isn’t the point of the story, though; the point is that I didn’t mourn. We broke up at night, and I called my mom and cried. The next day I had a medical appointment in the morning. On the drive there I wanted to cry but I stopped myself, because I didn’t want to be an emotional wreck during the appointment. I didn’t want to be distracted. By the time I got home, I was too tired to deal with my emotions. The next day I had another appointment. Again, in the car I almost cried, but I stopped myself.

And then that was it. I never really cried. I just went on with my life. I didn’t talk about it much with friends. What was the point? The breakup was no one’s fault. I wasn’t mad at her. I missed her, but talking wouldn’t help, right? The thing is, pushing aside my feelings just meant that I felt fine at the time, and now it’s caught up with me. Now I’m stressed out and anxious.

But it took yesterday for me to figure that out. I thought I was stressed about other things. I knew my response to them was way out of proportion, though. I wasn’t sleeping well. I was anxious a lot. I was overwhelmed. I was yelling at people. What was wrong with me?

What was wrong was that I wasn’t dealing with things. I was pushing them aside.

And as if that wasn’t enough, I have autoimmune disease. Thankfully, I didn’t get sick! But it was definitely a strain on my adrenals, and I had to increase the dose of adrenal supplement that I was trying to decrease. There has definitely been a physical toll.

I have a pretty good handle, all things considered, on managing my physical symptoms. I have had decades to figure that out. But when it comes to emotions, I have to unlearn years of bad habits. I have to learn how to stop hiding from my feelings and to let myself feel them. I have to ignore the daily messaging from society that says crying is bad, being sad is bad. It’s ok to not be the happy, cheerful poster-lady of chronic illness. It’s ok to be sad, stressed, anxious, or whatever else. I just have to stop hiding from it.

So that’s my lesson for this week. It’s taken me far too long to learn it. Before long I’m sure I’ll be learning some other lesson. But for now I am focusing on this one. Because I’m still sad, and I’m still learning.

Now it’s time to go do my stream-of-consciousness journaling again. Hopefully I’ll cry.


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