“Have you tried…..?”

September 28, 2015

We’ve all heard it. A well-meaning friend, a nosy stranger, a nervous relative, a new acquaintance hears about your health problem and asks, “Have you tried X?”

The first time you hear it, you probably think it’s nice they’re trying to help. Maybe they even suggest something you’ve never thought of. The 5th time you hear it, it’s a bit annoying, but at least they want to help, right? The 782nd time you hear it, you’re fed up and trying not to yell at them about their ignorance.

But how do you really respond?

A friend and I were sharing stories about this yesterday. She said how she always wants to say, “Do you really think you’ll suggest anything I haven’t already thought of?” and I said that I do actually say that. She was shocked that I say it. I was shocked that she doesn’t say it.

The thing is, why bother pretending? I’m not mean about it, but I do point out that I’ve had my health issues for more than 20 years. I read the news. I follow health blogs, Facebook groups, and twitter accounts. I read library books and newsletters. I talk to friends with similar health problems. And let’s not forget, I just happen to see many doctors. So do they really think they’re going to suggest anything that I haven’t already thought of or had suggested to me by a professional? I point all that out, nicely, and no one is offended but they do stop offering me advice. Win!

What about you? How do you handle it when someone asks, “Have you tried….?” Please share your approach in the comments. I’d love to know what everyone else does!

A little snuggle goes a long way

August 21, 2015

I had a nightmare last night. It happens from time to time. Sometimes it’s easy to go back to sleep, but often it’s not. Last 2015-08-20 22.19.09night was easier than usual, thanks to the handsome guy in the photo.

I happen to be dog-sitting this week. This adorable fellow was asleep, with his little tongue sticking out (isn’t that cute?) at the foot of the bed right around the time I went to sleep. Hours later I woke up, startled and upset. Before I could even remember where I was, he got up from the foot of the bed, came over to me, and cuddled up by my chest. I reached out to pet him, and he began licking my arm.

Before I had time to think about it, I was asleep again. I woke up hours later with this guy back at the foot of the bed. I don’t know when he moved. I just know he was there when I needed him.

How lucky can a girl get?

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.

A little support goes a long way

July 24, 2015

I was having a tough day. I was exhausted, fatigued, and in a lot of pain. It all felt overwhelming. I was supposed to spend the night at my parents’ house, but just the idea of driving down to them felt like too much. With my mother’s encouragement, I went anyway. She knew I’d feel better when I arrived, and I was pretty sure she was right.IMG_20150724_195633

I rested for a while and finally got in the car with my things. I hit far too much traffic for 3pm on a Thursday, but after nearly two hours, I arrived at my destination – it took double the time it should have.

As soon as I walked in the door I got a big hug from my mother, a smile from my father, and warm greetings from two wonderful pooches. It shouldn’t have mattered. It shouldn’t have made me feel better. And yet, somehow, it made all the difference. After some cuddling with the guy above, I felt so much better. Some good homemade food, nice conversation, and tv rounded out the day and before I knew it, I was asleep on the futon with this cutie pie stretched out alongside me. There’s just something about cuddling with a dog that makes me sleep so much better.

The pooch has been great medicine, but my parents have been, too. The simple things help more than they know. Helping me to carry things, fetching things for me, and just generally trying to help me feel good showed me how much they care. They made me feel cared for. And that’s why now, just 27 hours later, I’m still in pain, but I’m less fatigued and my soul feels refreshed. I’ll spend an extra night here because I know that no matter how I feel, my parents will always do their best to help me feel better. So thanks Mom and Dad! You’re the best!

It feels so good to be included

June 22, 2015

Over the weekend we had a family thing. As part of the thing, we ate. Simple, right? Well, it’s not quite so simple when you have a lot of food restrictions. But it gets a lot easier when it’s at my mom’s house.

My mom is amazing. She has always been my biggest supporter. Now, with my food issues, she goes out of the way to have food I can eat. There’s gluten-free bread in her freezer and gluten-free crackers in her pantry for when I visit. When I’m there, she prepares meals I can eat. She thinks it’s absurd not to do that. Fantastic, right?

She wasn’t planning to cook this weekend, though. Because of the way things were scheduled, the plan was to get takeout. My aunt wanted to pick up some prepared foods from an Armenian shop near her. My mom asked if I could eat that food and I said no, but that I’d bring my own food.

I always offer to bring my own food. I always say I don’t mind, but the truth is that I do. It sucks having to always bring my own food. It feels awkward when I’m invited to dinner at a friend’s house. I stand out at potlucks. I have to cook more and prepare more than other people do. Logistically it’s hard to always carry it. It’s a pain in the ass, really. And I have to eat the same old boring dishes while everyone else gets to enjoy something new and exciting. Still, what else can I do? I can’t always expect others to prepare gluten-free, dairy-free, broccoli-free, kale-free, peanut-free, alcohol-free, corn-free, caffeine-free etc. foods. It’s too much. So I bring food with me wherever I go.

In this case, there would be 13 people, and I didn’t want the others to have to accommodate me. My mom, ever the ally, made the offer, though. She asked where I could eat. So I listed a few general options. Indian food usually works, for example. My wonderful mother decided we should all eat Chinese food, one of my favorites, because there’s a Chinese food restaurant near them that has a lot of gluten-free dishes, and I’ve eaten there before, so we knew it was ok. I asked that my gluten-free dish be set aside separately, so it wasn’t contaminated.

But that wasn’t good enough for my mom. Oh no. She made sure all of the food was gluten-free! She and my aunt intentionally made sure every item they chose was gluten-free. She carefully stated it several times when she placed the order. And, sure enough, I could eat every single dish on the table! Sure, I skipped a couple (I don’t like shrimp and ribs don’t appeal) but I ate each of the others and loved it. Even better, I ate the way everyone else did. I didn’t stand out at all. It was such a treat!

I don’t expect every person to always find a way to include me in their meal plans. That simply isn’t realistic. But it’s so damn great when they do! Thanks Mom!

What doctors learn from us

April 19, 2015

Most of my doctors work at one of Boston’s teaching hospitals, so I sometimes have a student or intern in the room during my appointments. This past year, there was a fellow, Dr. N, working with the doctor who I see for my sleep problems. The fellow has been really great, and I’m sad that he’s leaving in June when the fellowship ends. Before he leaves for an exciting new position, I wanted to tell him how great he’s been. But he beat me to it!

At my last appointment, I pointed out that I probably wouldn’t see him again, and he looked sad and reached out to shake my hand. Then he said, “I’ve learned a lot from you.” I was completely shocked. He was being very sincere. I could tell that he really meant it, that he had learned a lot from me. I was truly touched.

I hadn’t thought much about him learning from me. I had been thinking about all I wanted to say to him about what a great doctor he is. I still told him, and I gave him specific examples. I asked that he try not to lose his enthusiasm and caring over time.* He blushed deeply and said he wouldn’t. I hope what I said sticks with him. What he said sure sticks with me. But in that moment, as I was thinking about what I wanted to say to him, I was caught off guard and didn’t know how to respond to his statement. Now I’ve had some time to consider it.

I try hard to convince doctors to be open-minded and understanding, but I forgot what an impression I might make on doctors who are completely new to the field. With Dr. N, it wasn’t just about open-mindedness and understanding. That was part of it, but I think I showed him what a chronic illness patient really looks like. I’m guessing he hadn’t seen many yet, and probably few like me who are so proactive no-nonsense. He saw my resilience and determination. He also saw my fear and anxiety. He heard me say I was willing to try anything, but push hard to prioritize non-pharmaceutical options. He saw me work incredibly hard and try many options, even the ones I clearly disliked or feared. He received many emails from me as I tried to improve my health, emails that were always short, to the point, and respectful. He saw me struggling to stay awake in appointments while trying to joke and keep the atmosphere friendly. He heard me state my symptoms methodically, without complaining about them. He heard me emphasize the disabling aspect of my symptoms in an effort to be taken seriously, even when no one expressed doubt, and I’d like to think he understood why I felt the need to do that. In a short time, he saw and heard so much.

I don’t know what exactly Dr. N meant when he said he’d learned a lot from me. I can only guess. But I would like to think that at least one new doctor now understands more about what chronic illness patients deal with, and will show them the compassion and understanding that we all deserve.

*Note: Dr. N really was fantastic. He went out of his way to do everything he could to improve my health. On top of his magnificent efforts and attitude, he was also very knowledgeable without being arrogant. I hope he goes on to be the amazing doctor that I suspect he’ll be.

It’s ok to ask for help

November 30, 2014

I’m so used to asking for help because of my health. Sometimes it’s something simple, like today when I couldn’t turn a screw that was stuck. I thought maybe it was because of my joint problems. But as it turns out, my very healthy and very strong friend couldn’t turn the screw either, so it wasn’t just me. That felt a bit odd.

But what felt even stranger was asking for my friend’s help with something that was absolutely in now way related to my health problems. Usually the help I ask for is obviously health-related, like bringing me food when I don’t feel up to leaving the house or carrying something that isn’t heavy or large but that I still can’t manage. That kind of thing. And sometimes it’s on the edge, like turning a screw that may or may not really be stuck.

Then there are the things that are completely unrelated to my health in any way whatsoever. And that’s what happened today. I needed to reach something that I just couldn’t reach. Even on a step ladder while wearing heels, it just wasn’t going to happen. Because the thing is, I’m short. I’m very short. Well ok, I’m not that short, but I’m definitely well below average height-wise. My friend is 5’9″ and was able to reach this thing from my step ladder. No one of average height, no matter how healthy, would have been able to reach that thing, so of course I couldn’t come close.

Here’s the weird part, though: I kept trying to excuse asking for help. I kept joking about it, and insisting that I really did need the help in a way that wasn’t health related. And then I wondered why I was trying to justify the request. The friend who was helping me is one of my oldest, dearest friends. She’s one of the only non-family members in my life who knew me before I had any health problems. She has brought me groceries, fetched prescriptions, shoveled out my car after snowstorms, and carried numerous heavy objects. And I have helped her with personal things as well. If I feel the need to justify my request to her, of all people, then it’s obviously completely about me. She certainly didn’t say or do anything to suggest that I was asking for something unreasonable. She has never judged or questioned any of my requests. She often offers unsolicited help. So why was I so defensive?

I hate asking for help. I hated having my mother cut my meat for me when I was 16 and could only use one hand for a while, and I hate asking for help now. I have been judged by too many people, from strangers to doctors to the Social Security Administration, and sometimes I assume I’m being judged even when I’m most likely not. I can’t stand being seen as weak. I was a crier when I was much younger, and around the time I grew out of that, the pain began. There have always been so many things I couldn’t do, and now there are even more. I forget that asking for help is its own form of strength, and so I resist it. Yet I need help so much, and avoiding it just isn’t possible.

So when I really need to ask for help, I expect to be judged as weak, even when that’s not happening, and apparently I get defensive to minimize the weakness that’s perceived. It may not be right or necessary or even make much sense, but it’s where I’m at after more than 2 decades of pain and other symptoms, and more than 2 decades of judgement from others.

Why am I telling you this? Because I’m guessing that many of you also have trouble asking for help. Your reasons might be similar to mine or completely different, but you have your reasons. Sometimes they’re justified and sometimes they’re not. No matter what, I want you to know that you’re not alone.

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