The shock of speaking with a supportive doctor

August 9, 2015

“I’m impressed by how well you know your body.”

“It’s not your fault you have gluten intolerance or hypothyroid. It’s just what you’ve had to deal with and it seems like you’ve been doing a great job.”

I’m not used to hearing things like this, especially from a doctor. Who was this amazing stranger?

24 hours ago life was good. I’d had a fantastic day with first one friend, then another. I’d spent a lot of it outside on one of the rare August days that’s cool enough for me to be outside. I was happy and content and tired in a good way. It was an absolutely perfect day. Until the reaction.

I’d been putting off trying Metformin for ages. I was worried that it wouldn’t sit well with me. I know a lot of women have problems with it. But I was also running out of options. I can’t take estrogen because of the side effects, and ditto for progesterone. My naturopath wants to try some homeopathic treatments. My only options were the homeopathy, Metformin, or literally scraping my uterine lining. I’d prefer to avoid that last one. So after dinner, I swallowed 1 pill. And almost immediately it hit me.

Diarrhea, nausea, and a racing heart all waxed and waned for what seems like years. After several hours of symptoms I texted my aunt my symptoms and asked her to get my uncle’s opinion. He’s a non-practicing doctor. The last time I had a bad reaction to a medication he told me to wait it out. When I blacked out in their living room he took my blood pressure and had me rest. He’s never told me to go to a doctor. This time, he told me to call my doctor. So I knew I should do it.

It takes a lot for me to call my doctor. I’m sure many of you can relate. I’m used to things going wrong with my body, so I don’t panic. And the diarrhea wasn’t so bad. It was certainly less bad than my reaction to eating gluten. But the racing heart had me worried. My resting pulse is around 75. I kept checking my pulse using a phone app. It was 82, 89, 95, 94, 88, 83, 99, 101, 109…. I didn’t like that my pulse had gotten better, then worse again, and so had the diarrhea and nausea. I almost never call a doctor after hours; the last time was probably 10 years ago when I was coughing up green phlegm. But this time it seemed like the right move, so when my uncle told me to call, I did.

My endocrinologist (who prescribed the Metformin) doesn’t have after hours, so I called my primary care physician’s office. Just 5 minutes after I left the message I got a call back from the doctor on call. This was 10:30 on a Saturday night, so I wasn’t sure what to expect. This guy was amazing! He spent 25 minutes on the phone with me. I stated my symptoms, the timing, and what I’d been doing (orange juice in case it was a blood sugar problem (because Metformin can do that), sucking on ice to stay cool and hydrated, etc.) I was a bit defensive and insecure as I stated just a few of my current diagnoses. I was apologetic for calling. I couldn’t help but brace myself for the doubt that usually follows, so I was shocked when, instead of doubt, I received support!

Thankfully, he didn’t feel I needed to go to the hospital unless things got worse. He agreed with me that, because of my immune system problems, it was best to keep me away from the hospital as much as possible. That was a relief. The shock was the way he treated me. Instead of assuming I was exaggerating, he took me seriously. He said more than once that it was good I called. He told me how impressed he was with the way I was responding to his questions and monitoring my situation. He couldn’t have been any more perfect.

My current doctor is supposed to be the best, but I haven’t been thrilled with him. Now I’m thinking about switching. I might be much better off with whoever belongs to the voice I heard over the phone last night who was calm, reassuring, supportive, and clearly knows his medicine, too. I don’t have to decide now, but I’m definitely going to give this some thought.

As for my own saga, another 1/2 hour or hour after I got off the phone and had texted an update to my aunt and uncle, my symptoms eased enough that I was able to doze off. When I woke up, I felt much better. I dozed again, and this time when I woke up I felt ok. I moved from the couch to my bed, and slept a deep sleep until morning. I’m spending the day resting, just like the doctor ordered. It’s another gorgeous day outside and a friend invited me to a barbecue, but I don’t mind missing it. I’m just happy to be feeling ok (though tired.) Today has been all about computer solitaire, movies, tv, and crochet. But tomorrow might just be about researching that doctor.

4 Comments | Expectations, Gastrointestinal, Healthcare, Kindness, Medication, Pain, Raves, Support, Symptoms | Tagged: , | Permalink
Posted by chronicrants

How to dress for a new doctor

July 30, 2015

There was a time when I never thought for a second about what to wear to doctor appointments. I just wore whatever I was going to wear that day anyway.

Then for a while I thought about it in small ways. Are the sleeves easy to push up for a blood draw? Is this shirt loose enough to get a stethoscope underneath easily? Is the outfit fast and easy to get off and back on? 2015-07-30 10.41.51

At some point, things shifted. I still think about those small things, but now I have to consider what my appearance says to the doctor. If I dress too slovenly, they’ll think I don’t care about myself. Or they’ll just have an unconscious dislike for me. If I dress too well, they’ll think I’m faking it when I talk about my symptoms. I don’t want to look bad, but I don’t want to look too good, either.

I’ve heard from friends with chronic illness that they have this same problem. They want to look decent, but maybe they don’t put up their hair or they skip the makeup or they wear a t-shirt instead of a button-down. And like me, they feel ridiculous for worrying about what they wear when what really matters is their health, but they also know much one will be impacted by the other. So they plan carefully.

I’m seeing a new doctor today. I’m excited to see him. I scheduled this appointment 2 months ago, I wrote up my notes, I have my list of questions, I read the book he wrote and I’m bringing it with me, and I’ve got all of my medications and supplements in a bag that I can bring with me so that he can see exactly what I’m taking. I’m ready. Except for my clothes. I’m still in my pajamas because I just don’t know what to wear. How absurd!

Do you worry about what to wear to appointments? Do you feel it affects how your doctor perceives you and treats you? What has your experience been? Please let me know in the comments!

Leave a Comment » | Decisions, Expectations, Frustration, Healthcare, Insensitive, Rants | Tagged: , , , | Permalink
Posted by chronicrants

The problem with SSDI’s trial work program

July 28, 2015

When you’re on SSDI (social security disability insurance) the presumption is that your disability prevents you from working. Ok, I get that. But what if you want to return to work part time or full time? Ah, that’s and interesting process.20120809_220808

Everyone gets a different amount of money through SSDI. The formula is based on how much you paid into the system, and that in turn comes from the salary you earned and over how many months you earned it. You might be getting $900 per month or $1800 per month. If you’re on SSDI for more than 2 years then you’re eligible for Medicare, which is health insurance. You’re also more likely to be eligible for other benefits.

Now, what happens if you start doing some work? Well, at a certain point the SSA (Social Security Administration) decides that you’re able to support yourself. That point is a set number. It’s not a percentage of your benefit. Nope. It’s a set number: $1090 per month right now (this can change each year.) So if your benefit is $900 and you start earning $1100 then you lose SSDI and Medicare, but that might be ok with your extra income if you’re earning $1100 every month. You might only earn it occasionally, though (more on that in a bit.) But if your benefit is $1800 and you earn $1100, then you lose SSDI and Medicare and, unless you have unearned income from some source (like a spouse, alimony, or investments) then you’re probably screwed.

That’s how I feel now: screwed. I’m ready to do some small amounts of work, which is exciting in and of itself! I recently earned around $1100! This is very exciting! If it was all in 1 month, though, it would count towards my return to work trial period of 9 months total. Those total 9 months are spread out over 5 years, so I could work for 2 months per year, and still lose my benefits. That’s not good! Luckily for me, it was spread out over 3 months, at an average of under $400 per month. What a relief!

But wait, isn’t there something wrong with the system if I feel relieved to earn less money? Shouldn’t the goal be to get me back to work so that I don’t need benefits?

What if I make more than $1090 per month for 3 months this year? Then what if the same thing happens again next year? I’d stop working altogether so I wouldn’t risk going off benefits. I can’t afford to have 0 income, and I definitely can’t afford to lose my health insurance!

Instead, the system should encourage me to work part time with the hope that I would build up to more part time work or even full time work! The trial work period should only cover a short timeframe, like a certain number of months worked in a 1 or 2 year period. There should be a grace period for Medicare.

But with the current setup, I’m scared to attempt to go back to work. What if I try to work, lose my benefits, and then fail to continue working? Yes, there’s a grace period where I can get back on benefits, but it’s short. And I’m scared. It took me more than 2 years to get on SSDI in the first place. I can’t take a chance on losing it.

And that’s why the system doesn’t work.

Have you felt the same way about SSDI? How do you handle it? Do you hold back on the amount of work you do in order to stay on benefits?

8 Comments | Expectations, Frustration, Healthcare, Insensitive, Job, Limitations, Politics, Rants | 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

« Previous Entries
Next Entries »