How Do You Know It’s Time to See the Doctor? (When You Feel Like Shit All the Time)

Are you a shopper?

Some people love to shop. Others do everything to avoid it. I have to admit, I can go either way. Don’t get me wrong: I can browse just about any kind of store with the best of them. It doesn’t hurt if there are books, video games, or kids’ clothes either.

It’s just some people seem to take forever to find what they are looking for so it makes me wonder: do they really know what they are looking for in the first place? Despite my own browsing behavior, one thing I know for certain: when I go looking for something I know immediately what I want when I see it.

So certain am I in my ability to know myself that I was thrown off guard recently. I felt like something wasn’t quite right, but I couldn’t put my finger on what it was … until a good friend asked me how I would know when I usually feel pretty “yucky”. The question gave me pause. I admitted I wasn’t quite sure, but I felt like I would know the difference.

It makes you wonder: When do you know it’s time to see a doctor?

There are the obvious ones: profuse bleeding, broken bone, high fever … I’m sure you have your own list.

However, if you have RA you often have a number of issues at any given time: fatigue that doesn’t seem to go away, low-grade fever, nausea, pains and cramping in various parts of your body … and the list goes on.

If any one of these gets significantly worse … or … if any of these continue for some period of time it’s probably a good idea to mention it to your doctor. Problem is, what’s the doctor going to do with “vague” symptoms?

Case in point: I went to see my doctor over a month ago with excruciating migraines, sore throat, loss of voice, difficulty swallowing, upset stomach, low-grade fever, aches, chills, and various body pains. We thought it might be strep throat, so sent a sample for analysis.

Turns out I had nothing. Or, at least that particular test was negative.

But all those symptoms persisted.

I waited another week before my symptoms had grown to such an extent, I had to go to the hospital. I was told I had a bladder and kidney infection.

For anyone, these are painful and unpleasant, but often easily treated.

I’m not just anyone.

In my case, I went through several rounds of antibiotics and over a month before I could even walk without pain.

Which brings me back to my original assertion which was I would know when there was something wrong with me … turns out I was right but even knowing that didn’t do me any good whatsoever because the healthcare system still had to figure out what it was in order to treat it. And, it’s not easy when your symptoms are rather vague or could be so many things.

Is it something new? Is it related to my RA?

However, I put it to you that in the case of someone that has a chronic disease when so much more is at stake … and I’m not just talking more pain … you’d think we could run a few more tests, be a little more thorough, or … perish the thought … proactive or aggressive with regards to getting to the bottom of these symptoms.

As for me, I’m chalking this one up to a lesson learned.

Push for answers.

Don’t just wait and see.

Be your own advocate.


When You Have a Chronic Illness, So Do Your Loved Ones

My husband texts me every morning. It’s a simple thing. It’s kind of romantic, kind of corny. I’ve teased him about it, all the while grinning because I like it.

Until I found out the other reason he does it.

There are nights I don’t sleep. There are mornings I am sleeping so deeply, he can barely tell I’m breathing, let alone wake me up. And then there are the mornings after I take my methotrexate.

I’m one of those patients that endure unpleasant side effects the day after my medication. In particular, I am physically ill and weakened for a day or two while my body adjusts.

I do this every week, every month, every year.

It’s unpleasant enough that sometimes I’m too exhausted from the night before to be able to wake up the next morning when my husband leaves for work. In my defense, he does leave early … however it never occurred to me the impact on my husband because I thought he just missed getting a goodbye morning kiss.

He texts me, that morning after, to make sure I’m still alive.

I will be honest: I broke down and cried when he told me that. I always knew my chronic illness affected him because he cares about me and doesn’t like to see me in pain. And, sometimes, it’s damn inconvenient not being able to do all the things we want to do. It just never occurred to me that day in, day out, he lived with my disease that way.

If you’re like me, we sometimes forget that our loved ones are also impacted by our chronic disease. And, sometimes, we just don’t realize how deeply.

They stand by as we cry from the physical and mental pain of inflammation, fatigue, and injury.

They stand by as we battle infection, complications, and depression.

They stand by as we manage the healthcare system.

All the while, they balance doing things for us with allowing us the dignity of doing for ourselves. These are the people that stand up for us when we cannot, that hold us when we need holding, that quietly manage their own needs after ours.

Anyone that doesn’t demand that care-givers need a voice simply hasn’t been there.

Special for the Wrong Reasons

Last time I was in emergency at the hospital I was told I was special. I smiled despite how wretched I felt and thanked the doctor. First he looked at me like I didn’t understand and then he explained I was special, but for all the wrong reasons.

That’s when I grinned … and explained.

My chronic disease has been called many things by many people: complicated, inconvenient, deadly, but never special. I understood in that moment the doctor was concerned about treating my symptoms appropriately given the nature of my illness, the physical state I found myself in, and the medications I take to manage my health.

I got what he meant … and it made me feel safe … that’s why I smiled.

He wasn’t being glib, sarcastic, patronizing, or dismissive. He was telling me he wanted to get this right. For once, it wasn’t just me that felt pressured to get the treatment right.

You know, that isn’t a fair statement. There are other times when I feel the person taking care of me is in it with me. It was just something about this doctor that stood out and that’s what’s been in my head for a couple weeks now. I can’t be the only one that wants and needs to feel and know their healthcare team is in it with them. Not just that they care: it’s part of who they are … a calling.

Perhaps it was the way he took his time asking me questions; answering mine. Perhaps it was the way he looked me in the eye and never cut me off. Or, perhaps it was the way he gave me a hand getting up from the table after the examination, making certain I found my footing before he continued speaking.

Patience. Understanding. Validation.

There was such intense relief feeling like I was going to get to the bottom of what was wrong with me … that I wasn’t alone … that the pain would not be for nothing. When he told me they were going to give me something for the pain I tried to tell him it was much more manageable now that I felt I was being listened to, but he shook his head. I’m not one to take pain-killers I assured him. Again, he shook his head.

He knew better than I that it would be some time before the infections would be cured and that the pain simply wasn’t necessary. He couldn’t make it all better, but he could give me some relief so I could continue to be strong … to give me some dignity in my pain.

I felt like crying and this time it wasn’t because of the pain.

I felt like he saw me … that’s how I know he cared.

Knowing he cared allowed me to close my eyes and relax.

Much of what that doctor did was no different than any other encounter I’ve had and yet it sticks in my mind. He took no more time than any of the other doctors that saw me that visit or any other. I guess the time he took seemed like mine … not just the time until he saw someone else.

Like I said … he saw me …

I couldn’t ask for better care, but I would like to know why that isn’t the care patients receive every visit.