Learning it’s ok to cry

September 11, 2015

A couple years ago I wrote about the fact that I don’t cry much about my health situation but I wasn’t sure why. By contrast, I know exactly why I don’t cry from the pain itself, and that’s because it started when I was a kid, and I learned fast that the adults in my life thought that I was just trying to get attention. If I cried, they thought that even more. So I didn’t cry.

Fast forward to my 30s, and I still don’t usually cry from pain, frustration, or fear. I cry for other reasons – a sad book, the death of a loved one, and such and elicit tears, even though health issues rarely do.

In the last year, though, I’ve been making more of an effort to let myself cry when I want to. It’s cathartic, so why not? I do so much to try and help my health, both physical and mental, so shouldn’t I be willing to cry?

I started with simple things: I didn’t try to stop myself a few weeks ago when I was reading a sad scene in a book. Before, I would try to hold back the tears and fail; this time I didn’t try to hold them back. I let a few tears escape when I was dealing with a difficult health decision. It was a good start. And then came the real test.

When I was in the ER last week the pain was horrible, but even worse was the fear. My anxiety around doctors has been getting worse, and I was practically panicked at the idea of a doctor I didn’t know giving me stitches. What if he messed up? What if there was a broken bone they hadn’t noticed on the x-ray? What if he somehow hurt me? On top of that the pain was intense. For a while, I tried not to cry out of habit. Then, finally, I had an epiphany: it was ok to cry! This doctor didn’t know me or my history. I would never see him again. Plus, crying in this situation was not only acceptable, it was expected. I mean, I had a big cut that had been bleeding for hours and the doctor was dabbing at it to get away enough blood that he could see it clearly. Of course it hurt like hell! Why shouldn’t I cry?

So the tears came. They poured down my face and I did nothing to stop them. I didn’t make a scene. I didn’t yell or scream or sob loudly. I didn’t exaggerate but I also didn’t hold back. And you know what? It felt so much BETTER to let all of that out!

This is a long process. I need to unlearn more than 20 years of habit, but I know I can do it. I just need to make more of an effort to cry when I feel the need to cry. Wish me luck!

Does this sound familiar? Have you experienced anything similar? Please comment below – I’d love to hear your story!

5 Comments | Decisions, Expectations, Frustration, Healthcare, Limitations, Milestones, Pain, Raves, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

Four years later

July 21, 2015

My physical therapist asked “How does that feel?” It took me a moment to answer, because I had to first block out of my mind the pain in my right wrist, in three toes on my left foot, in four toes on my right foot, and in my left knee. Finally, I had a sense of how my neck felt.

I started this blog 4 years ago today. It was very different then, in so many ways. I was very different.

Back then, I was amazed if 1 or 2 people read my blog each day. Today, I get at least 20-30 readers per day, sometimes over a hundred in a day, plus over 200 who get the blog emailed to them and more who read it in Feedly and other

Where readers have come from in recent months

Where readers have come from in recent months

readers. This blog has had about 33,800 page views…. That’s not much compared to some blogs, but I’m very happy with it. After all, the goal was never to win any popularity contests, but to have a small community. I have a bunch of twitter followers, too. For the first few months I blogged every single day. I still don’t know how I managed that. Now I average 2 posts each week and that feels about right, but I never pressure myself to write and I never worry about keeping any kind of schedule. Best of all, I have an active audience who often comment on what I write and on each other’s comments; that’s what I wanted from the beginning.

And then there’s me. Four years ago today I was working at a job I didn’t particularly like, going in at 9, leaving at 5, and barely surviving it. Every morning I struggled to get ready for working, have to lie down and rest for 20 minutes after my shower just so I’d have the energy to put on clothes. I came home every evening and did nothing but watch tv, eat, and write one blog post. Gone were the days of socializing after work. I started to make mistakes at work. I was always exhausted and I didn’t know why. I was in more pain than ever. I only felt decent when I was on Prednisone, but when I went off that, the fatigue and pain returned full force. So did the gastrointestinal symptoms that had gotten somewhat better while I was on the drug. I had no answers, and my doctors didn’t know what was causing my symptoms or how to help.

Now I have some answers, though probably not all of them. I have taken charge of my life. I no longer turn to doctors for all the answers; I do my own research. I still deal with fatigue and pain, but my gastrointestinal symptoms are almost entirely gone. I understand the workings of my body much better than I did before. I’m not working, or even trying to work, and that takes away so much pressure and stress. On the other hand, it also leads to less financial security, and that does have me worried. I no longer travel, but I have learned to be happy and content where I am. In fact, that’s the biggest change: despite all of my health problems and the other areas of my life they have affected (money, dating, travel, and so much more,) for the first time, I feel good about who I am and about where I am in my life. I am happy and content in a way that I never was before. I take time for introspection more than I did 4 years ago and I have learned more about myself through this long process than I ever would have expected.

If you’ve followed this blog for a while, you’ve watched me struggle to figure out which foods I couldn’t eat, to start a gluten-free diet, to deal with insensitive jerks, to find new doctors, to beg for tests, to cajole for new medications, to deal with dating, to find ways to tell friends and relatives and acquaintances and strangers about my health. You’ve read my political opinions, my frustration, my anger, my joy, my views on so many topics, and my issues with everything from sex to diarrhea. It’s been an interesting journey and I’ve been so grateful to have you here with me as I take it. It’s been rough, too. Still, I see some overall improvement. I get frustrated a lot of the time that the improvement is so slow, and that for every 3 steps forward, I end up taking 2 steps back. Still, I’m grateful for any improvement I can get.

So I’m looking back over these past 4 years and it makes me wonder: where will I be another 4 years from now? Only time will tell, but I’ll do my best to head in a healthy, safe, positive direction.

What about you? How has your situation changed over the past 4 years, 4 months, 4 weeks, or any other time period you want to think about? Are you trying to change direction? Or are you able to forget about the past and be present only in the moment? (I’m still working on that myself.) How are you doing?

4 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Job, Limitations, Milestones, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

Birthdays: to celebrate or not?

June 29, 2015

There are certain holidays that come with pressure to celebrate. New Year’s Eve comes to mind. A couple years ago I skipped it and it felt sort of nice, in a sad way. I was too depressed about my health to feel that a new year was worth celebrating. I played board games with friends, and was home well before midnight. That worked for me.

This year, my birthday was sort of the same. I was feeling lousy and did feel like celebrating anything, especially not getting another year older which, in my mind, meant another year of lost youth, another year of lost opportunities, and another year closer to the health woes of old age on top of my current health problems. Yeah, I wasn’t in the best frame of mind.

So I decided to skip it.

Whoa! Not so fast! My family and friends didn’t like this plan. I know they meant well, but I was surprised at how much pressure I felt. People kept asking me what I was doing for my birthday, and they were upset when I said I wasn’t doing anything this year. I tried to brush it off by saying I threw a party last year, so there was no need to anything this year. I think they all suspected the truth, though. They knew I was feeling down. Some of them knew I was feeling too sick to celebrate. I wasn’t sure if I’d be up for doing anything at all that day. Would I be able to leave the house? Get dressed? Take a shower?

A friend who isn’t working said she’d take me out to lunch that day. Ok, that seemed reasonable enough. Low key. Simple. And if I had to cancel at the last minute, she’d understand. That made things so much easier! When people asked what I was doing for my birthday I could say a friend was taking me out to lunch. Yeah, ok, it sounded lame. I knew that. But it’s all I had.

In the end, my friend and I had a lovely time. Except for her paying for lunch, and letting me choose the post-lunch activity (sitting by a pretty pond, then chatting at my place) there wasn’t much mention of my birthday. And that’s just the way I wanted it. Simple. Easy.

Holidays are hard enough when you’re single and there’s no default person to celebrate with. I don’t have an automatic date for New Year’s Eve or someone I know will celebrate my birthday with me. Sometimes that’s really tough. Throw health problems on top of that, and then pressure from loved ones to have a bigger celebration that I want, and it’s just too much.

So that’s why I didn’t really celebrate my birthday this year. And I’m ok with that. Maybe next year I’ll have a party again. Maybe not. Either way, I refuse to stress out about it.

3 Comments | Expectations, Fatigue, Frustration, Intrusions, Limitations, Milestones, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Thoughtfulness, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

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!

3 Comments | Decisions, Expectations, Frustration, Gastrointestinal, Healthcare, Limitations, Medication, Milestones, Pain, Rants, Raves, Symptoms | Tagged: , | Permalink
Posted by chronicrants

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