Chronic Illness and Emergency Medicine (Or At What Point Do I Decide to Visit The ED?)

Recently, I found myself in the local Emergency Department with a huge amount of facial nerve pain. I'd been dealing with some tooth issues (or so I thought), but the pain became too severe and was unresponsive to either narcotics or Orajel, I had to find out if something more was going on. Of course, as with most of my trips to the ER, it was about 3 o'clock in the morning, and I was dragging my very tired husband out of bed to take me.

Fortunately, the local ER was on the slow side that morning, and I was seen pretty quickly. At this point, I had nerve pain radiating on both my upper and lower jaw on my right side of my face, and I was feeling it up into my cheek, eye, and temple.

I've had many, many trips to the ER over the years, so this wasn't my first rodeo, but the first contact with the doctor was a bit of a surprise, even to me.  Her first words to me after I explained why I was there?

"I'm not going to give you narcotics."

I think I managed an "Ok." (Even though I've learned to function in a fairly fatigued and pain-ridden state, it was still 3 in the morning, and I'd been awake for 23 hours at this point, the last 8 in excruciating pain. If I'd been able to think on my feet, my response would have been, "I'm not here for narcotics, I've got those at home. And they're not working.")

After the doctor established I wouldn't be getting any pain meds, she asked me to explain the pain again. My gut feeling said she was looking for any reason to tell me this was dental and I needed to see a dentist, but I also had the feeling that there was something more here.

This gut feeling was confirmed when she said, almost surprised, "Oh, I think we can help you. This sounds like a Parotid Gland infection."  And so I left there with the first dose of an antibiotic, a script for a 10 day course of antibiotics, and a shot of Toradol. After the diagnosis, the doctor asked me a few questions about who my primary care was, and I was able to educate her a bit more about the medical team I work with, the conditions I've lived with for years, and the fact that I will only go to an ER/ED if I think there is something really wrong. Once she realized I really wasn't interested in additional narcotics, she seemed to relax, and it ended up being a fairly quick and pleasant (well, pleasant for an ER visit) visit.

Over the years, I've developed my own set of criteria on when I need to go to the Emergency Department. There are many situations in which it's fairly obvious, such as something traumatic, but for someone who lives with chronic pain and multiple illnesses, I experience symptoms on a daily basis that would send the average "normal" person to the emergency room.

I want to make it clear that this is my own criteria for when I need to seek out emergency services, and should not be construed--in any way--to be medical advice for others. In fact, I regularly advise people to do the exact opposite of what I do myself.

Tiff's Criteria for ED Visits

Am I severely dehydrated? 
I've had the unfortunate experience of not being able to keep fluids in me for a fairly lengthy period of time. When this happens, I know it's time for IV fluids.

(After collapsing) Did I lose consciousness?
I fall. A lot. I have had the unfortunate tendency recently to have my legs give out on me or the room start spinning at a pace I can't keep up with. But I know if I fall (or collapse) and lose consciousness, I might have hit my head, and that can be fairly serious.

Am I having trouble breathing?
I've dealt with asthma my entire life and have had numerous upper respiratory infections. I've dealt with bronchitis and pneumonia on a number of occasions.  When I'm having challenges breathing and my inhaler doesn't do the trick, it's time to get it checked out.

Is my pain "strange" or intractable?
I live with pain all of the time. I live with pretty severe pain all of the time. That said, there are certain types of pain I consider to be pretty normal for me: my rib pain from costochondritis, my hip and knee pain from subluxations (which also can cause nerve pain, depending on which way things move), chronic back and neck pain, and lately, some pretty severe GI pain that I've nicknamed "Mr. Stabby."  If I have severe pain that isn't one of my normal pain areas, isn't responsive to my pain management methods, or just seems odd to me, that's when I'll head over to the ED.


How will I likely present to the ED doc?

I tend to be pretty stoic with my pain and tend to remain fairly calm in situations where I'm the patient. Yes, I likely have waited awhile since the onset of my symptoms to come in, because I've been trying other things or working up the courage to face going to the ED. Yes, if I can crack jokes, I probably will. I am one of those people who regularly hit the higher end of the pain scale, and it won't show on my face. Yes, I might even be on my phone playing a game, trying to distract myself as much as I can until you treat me. I probably won't be crying--usually hurts too damn much at that point. I always try to remain polite and friendly, even if you aren't, but I will advocate for myself. None of this lessens the fact that I require treatment. I am not medication seeking--in fact, I prefer to utilize non-narcotic interventions when possible. I would greatly prefer to see my medical team over whatever issue I'm having, but they're generally not available when I'm showing to the ED.

I realize I present very differently than many people's assumptions of what someone reporting my symptoms should look like. I'd like to say that I'm just bad ass that way, but in my experience, Chronic Pain Warriors tend to be a pretty tough group of people. We have to be. We do not have a choice in living with these conditions, but we do have a choice in how we deal with this life we've been given, and most of us would rather focus on the positive. This leads to a habit of not showing how bad things really are for us.

So, in short, to the ED doc that assumed my face pain was a search for narcotics, it wasn't. And just because I have a PRN script for narcotics doesn't mean I abuse them or that it's my only method of pain management. By the time I go to the ED for pain, I've utilized heat, cold, meditation, creams and topicals, CBD caramels, other non-narcotic medications, possibly massage and acupuncture, and my narcotic prescription. The narcotic pain pill is the last on my "things to do at home to try to control pain" list. I'm coming to you because the pain is a symptom that something else is wrong.

A list of definitions in my medical chart

Significant Support People (Or Why It's Important to Have Someone Supportive Who Also Has a Sense of Humor?)

Despite living with multiple chronic illnesses, I'm a pretty fortunate woman. I'm lucky enough to live in a beautiful place, in a home my Great Grandfather built, with my family all around me. I'm lucky enough to have a few very good friends in my life who "get me". I have a great backyard where I'm working on growing a vegetable garden and where I can find relaxation and peace.

I'm also extremely fortunate to be married to my best friend. Peter and I have been together for 14 years, married for almost 11 now, and so he has been with me through some of the worst times of my health stuff. He's one of the greatest support systems a person could ask for. I recognize that it's not easy being the healthy spouse (or healthier spouse) of a chronically ill individual, and it does take a lot of time and energy on his part to care for me, support me, and just generally deal with what life throws at us.

We genuinely enjoy spending time together. We're both creative souls, and enjoy artistic endeavors. Plus, neither of us are afraid of trying new things and learning new stuff. Before things started going really downhill for me health wise, we were always on the go, going on drives in the area just to explore. (I'd have my camera gear with me, of course.) We both share a love of outdoor spaces and he has spent many a trip helping me out of a creek I fell into (trying to get a photo shot), keeping me from falling down a rock into a creek (trying to get a shot), and slamming on the breaks when I went to jump out of a still moving vehicle (trying to get a shot.) (See a theme here? Yeah, my husband's married to a bit of a handful.)

© Tiffany Greer Photography

© Tiffany Greer Photography

© Tiffany Greer Photography

© Tiffany Greer Photography

© Tiffany Greer Photography

Yosemite National Park is one of our favorite places (see photos above), and we both particularly enjoy it in the winter (not as many people and beautiful scenery with the possibility of snow), but we also enjoy spending time in San Francisco at the Japanese Tea Gardens or walking around other public gardens. We visit places like Heritage Salvage in Petaluma where he seeks out materials for his next project as I enjoy the aesthetics of the variety of materials and compose shots in my head.  A few years ago, we both discovered an enjoyment of lamp-working.  Where I knit, photograph, and do a variety of creative and artistic things, his media tends to be metal sculpture, carpentry, blacksmithing, and glass work (including glass blowing).

Even after all these years, he's still a fun and interesting guy to hang out with because we have things in common we love to do, but also we both enjoy learning and growing about new things.

What's the secret? Our communication is pretty great. We talk about everything. But it's a bit more than that. There's another piece that's huge for both of us.

Humor. We use a lot of humor around here. People who overhear some of our conversations may wonder about us as sarcasm and quick wit are the cornerstone of our humor, but I truly believe it's humor that's kept us from getting stuck in the hard stuff.

I use humor whenever I can, sometimes to the surprise and (mild) horror of my medical team. Those who have gotten to know me know that it's how I cope. I'd rather be laughing about it than crying. It's helped me through a lot of really hard situations, and fortunately, I have a partner who gets that.

So, I wanted to share a selection of conversations we've had involving my health stuff and humor, maybe to inspire your own. (Don't worry; I'm keeping the particularly gruesome stuff out of it.)


(Background: My Rheumatologist ordered a 24 hour urine test to monitor my kidneys. I get to collect my urine for a 24 hour period of time in a container that's meant to be kept cold. They suggest a refrigerator.)
Me: *sigh* I don't want to keep this in the refrigerator.
Him: How about a cooler? We can get one of those Styrofoam ones.
Me: *nods* That sounds good.
Him: Because I'm also not going to let you store it in my lunchbox.


(Still about the same test, just on a different day.)
Him: What are you thinking about?
Me: I'm just thinking about the logistics of this 24 hour collection test.
Him: Do it on Sunday and I can drop it off on my way to work on Monday.
Me: I was actually thinking about the cooler and how to keep it cool. *pause* But thank you for offering to drop off my 'Jug of Pee' at the doctor's office. That's very sweet of you.


(On a particularly slow moving morning where I was having a lot of difficulty with fatigue and dizziness.)
Him: (After helping me into the tub for a shower) It's times like this I wish you had a port. I could just hook you up to a banana bag.
Me: (Laying on the floor of the tub--and not entirely joking) Oh, that sounds awesome. I could totally go for a banana bag right now.


(Background: I'm a really restless sleeper. The fact that I can throw all the covers, blankets, and pillows around in my sleep is an ongoing conversation in our household. This brief conversation took place after a particularly bad night for me.)
Me: (Upon waking at 5 AM and seeing the sheet balled up on top of me, the comforter on the floor on his side of the bed, the blanket bunched up at the foot of the bed, my 8 foot body pillow skewed across the bed, and my four pillows in various corners in the room.) Please tell me I had help doing this.
Him: (Helping me putting the bed back together.) Nope. This was all you.
Me: What time did you get up?
Him: An hour ago.
Me: I did this all in an hour!?!?
Him: No wonder you're so tired. You do all your exercise in your sleep.
Me: It's called multitasking, babe.


For both of us, humor is a coping skill that we use to deal with some of the hard stuff. It doesn't mean I don't get upset or frustrated or have bad days--because I have all of those in spades. But having a supportive partner who can laugh their way through some of the more ridiculous moments is priceless, and I'm grateful for him.

A list of definitions in my medical chart

Chronic Invisible Illness and Frustration with Medical Professionals (Or A Letter to the Rheumatology Department of My Medical Group)

Dear Doc-

You should know that you're not the first Rheumy I've seen.  I've had a Rheumatologist as a part of my medical team since I was 15 years old, nearly 25 years now.

In those 25 years, I have undergone many pressure point exams, many blood tests (and repeated blood tests), and many movement exams. I've had high SED rate results and a positive ANA for about 15 years.

I've watched multiple family members (including my mom) deal with different Autoimmune and Connective Tissue Disorders.

In the past 15 years, my list of symptoms has grown to include not only the Fibromyalgia symptoms, but also Joint Hypermobility Syndrome/Ehlers Danlos Syndrome, hypermobility type, Reynaud's Syndrome, as well as symptoms commonly associated with autoimmunity. Many of the symptoms I experience also show up with Fibromyalgia, such as brain fog and cognitive issues, chronic widespread pain, fatigue and general exhaustion, and GI distress, so I can understand why you may easily just categorize the experience of the symptoms as part of my Fibromyalgia. Except these symptoms have become progressively worse and the presentation of other symptoms have surfaced as well: unexplained fevers, chronic nausea, constant GI pain, kidney problems (and frequent flank pain), skin problems (including the "butterfly rash"), sun sensitivity, hair loss, dry eyes and mouth, shortness of breath (which is frequently attributed to my history of asthma, even though I have had little issue with asthma when I don't have an upper respiratory infection or bronchitis), sores in the mouth, frequent and easy bruising, ringing in the ears, migraines and cluster headaches, and a difficult time recovering from minor illness.

About 3 years ago, I saw a Rheumy within the system who quickly diagnosed me as having both Lupus and Rheumatoid Arthritis, and gave me a script for Plaquenil. In the next visit, he told me he didn't like treating people with Fibromyalgia, and so I made the decision easy for him and sought out another Rheumy.

This second Rheumy was actually pretty likable. He listened to me, examined me, ran some additional blood work, and started throwing around the possibility that I was dealing with Ehlers Danlos Syndrome on top of the Fibromyalgia. He also ruled out Rheumatoid Arthritis, but was particularly concerned with my familial history of Antiphospholipid Syndrome (APS).

I'm not sure what happened, but between the third visit and the fourth visit, the investigative doc who I had started to trust suddenly hit me out of the blue with: "You need to have a gastric bypass. The extra weight isn't helping your Fibromyalgia." with no other mention of other conditions I was seeing him for.

Now, let me be clear. After my initial diagnosis, I learned not to seek out assistance from Rheumatologists for the Fibro. Frankly, their attitude towards the condition and me was always so negative and borderline hostile for "wasting their time", I choose to work with a PCP who could help me manage the Fibromyalgia to the best of my ability. I find myself having to state that at each Rheumy appointment. At this point, I only see a Rheumy because I'm on Plaquenil and it's generally not something a PCP will prescribe. Plus, I have a lot of symptoms that are concerning and fall outside of the Fibromyalgia realm.

And my weight is a sensitive issue. I have gained a lot of weight over the years from the variety of medications I've been on. I also did some really stupid things with my metabolism in high school, college, and grad school where I wouldn't eat all day. With the chronic nausea and fact I tend not to feel hunger, I have a tendency to skip meals. I worked with a nutritionist a few years ago, and started tracking my food, and despite being obese, we realized I was getting less than 1000 calories a day. In short, my body was in starvation mode and holding onto what food I did eat. I have to eat by a clock since I can't trust my body to signal me.

To add to all of this, for the past year, I have not been able to keep food in me. Thirty minutes to an hour after I eat, I'm sick. We've been working to figure out what's going on. Have I lost any weight? No. I have to assume it's what the nutritionist diagnosed as my body being in starvation mode. What I can say is that I'm beyond exhausted.

So when the doctor says I needed a gastric surgery to lose weight, yes, I became upset. It's frustrating to me to go from someone who just four years ago was vibrant and enjoying life to barely being able to function and not enjoying my life. If I honestly thought gastric bypass was the answer, I'd consider it. But since my (albeit, basic) understanding of the way the surgery works is that it limits calorie absorption--and I can't absorb calories since I can't keep food in me--I'm not sure that a major surgery would be helpful at this point.

This led me to request a new Rheumatologist, which brought me to you. And I hoped that the fact that you are a woman may mean you'd take me seriously. Historically, women--particularly overweight women who experience chronic pain--are not taken seriously by the medical profession. Our pain and reports of symptoms tend to be dismissed.

My hopes where immediately dashed when you walked into the office on that first appointment together and said to me, "I've worked closely with Dr. (last Rheumy I'd seen); I agree with everything he says."

I should have walked out at that point. There was no point to this appointment.

But no, I stuck around long enough to explain I was here because I was on Plaquenil (which, according to you, I shouldn't be on) and try to explain my symptoms (which, according to you, weren't rheumatological), and we ended the visit with the decision that we'd wait to see what the GI specialist came up with on my GI stuff.

Our next visit, I brought my husband with me. It says something to me when I feel it necessary to bring a man to my doctors' appointments so that I can be taken seriously, but we were at that point. (I'd like to mention that he accompanies me to a lot of my appointments just to be a support and second set of ears. He also gets the chance to ask any questions or bring up things that my fibrofog caused me to forget.)

Within 5 minutes of walking in the door, you refused to listen to my list of symptoms, again stated that you wouldn't have put me on the Plaquenil due to my tests, and asked me if anyone had ever talked to me about Fibromyalgia.

I admit, it was not my finest moment, but I completely broke down and lost it. Not only did you seem to not have read anything in my chart, but you weren't interested in listening to me at all.

My wonderful husband kept me from walking out of the appointment and explained the issues that I'd been having and eventually convinced you that blood tests were warranted. You acquiesced, letting us both know that things probably wouldn't show up, but you'd run the blood work.

The thing is I want to see you less than you want to see me. You may be a great doctor. But your bedside manner needs some serious work.

I felt a bit vindicated when my blood work came back funky. I read the pathologist's report that there was definitely something going on in my blood work, but it was unclear if it was well controlled Lupus (since I am on Plaquenil, I assume) or something related to APS. My kidney tests also showed some abnormalities that we're following up on. For the first time in years, my SED rate was low and my white cell blood count was down (which was interesting because I was diagnosed with a raging Parotid Gland infection a few days later.)

You see, I know a lot about the conditions listed in this blog. I know a lot about the tests. I read the same medical journals you do, as well as belong to several organizations dedicated to chronic pain management and advocacy around these invisible illnesses. I am not only a chronic pain patient, I am a mental health practitioner who works with individuals who live with chronic pain. I probably do more research than you in this area. While you may be an expert in the field of Rheumatology, I am an expert of what I experience in my body and what might be affecting me. I also research all the treatment options and I know which medications I've been on, which I can't tolerate, and what I'm not willing to even try.

I realize I'm either the best kind of patient (to the right doctor) or the worst because I educate myself and I advocate for myself, and I have no problems verbalizing my concerns about treatment. I'm also a complicated patient who has a lot going on. I didn't ask to have all of these issues or to be a difficult patient. I didn't ask to spend so much time at doctor's offices, having procedures, getting tests done, or being sick. I want my life back (or at least what I can get back).

In my heart of heart's I believe there is something rheumatological going on. That is why I continue to push forward.

I've applied the "three strikes" rule to doctors, and so far, you've got two strikes against you, Doc. I'll see you one more time, but if this visit goes the way of the others, I'm moving on. (And since Rheumatologists seem to be leaving my medical system at a rapid rate, I'll likely request referrals to UCSF and/or Stanford.)

Well, Doc, this sums up what you haven't been willing to let me share in our appointments. I'm not after a particular diagnosis or treatment, but I am after good medical treatment, which is what everyone deserves.



A list of medical definitions in my medical chart.

Chronic Pain Conditions and Dental Issues (Or What Happens When a Fibromite Goes to the Dentist?)

Growing up, I experienced one of the worst, and yet probably most common experiences for a teenager.

I had braces.

Not only did I have braces, but since that was well before the time of Invisalign, I had the full metal braces (kept in place by colorful rubber bands, because I was that kind of cool) and even got lucky enough to have to have rubber bands that would criss-cross within my mouth to bring my jaw (or something) into better alignment. I spent almost 3 years in those bad boys, with regular visits to my orthodontist and my dentist.

And the staff were great. I loved going to the dentist and orthodontist. I wasn't always a fan of the fluoride treatments or getting my braces tightened, but I loved the people at both offices. It was always such a positive experience.

So, it really doesn't make a lot of sense that as an adult, I've become terrified of going to the dentist. I realize this isn't an uncommon fear (or discomfort) or many people, but there's usually a childhood story behind someone's dislike of dental work that makes that discomfort understandable. I don't have a horribly scary childhood dental story.

Admittedly, when I first started avoiding the dentist (in college), it was financial. I was no longer covered on my parents' insurance and I couldn't afford to pay for it myself. And despite the less than stellar return visit with the dentist when I was able to go (yup, my first cavity), the visit wasn't unpleasant. It was uncomfortable, but I had lived through much worse. (Read above: metal braces with rubber bands.)

As I got older, though, I noticed the discomfort increased. It wasn't pain within my teeth so much as it was jaw pain. And the visits were continually less than stellar. I kept getting cavities. As a nighttime teeth grinder, I knew I was damaging my teeth. And despite my attempts to keep my mouth hygiene top notch, it was becoming more and more painful to brush my teeth (for both my mouth, but also my hands). Flossing regularly was a near impossibility.

After a few years of avoiding the dentist, I found one that I really liked. Her technique was gentle, and I had a great hygienist. They tried to work with me to figure out how to solve some of the issues I was having in order to preserve my teeth. To my knowledge, neither of them had personal experience of the pain challenges I was dealing with, but they were genuine in trying to help.

And then the great hygienist left. When there are few major issues, the hygienist tends to be the one you spend the most time with at the dentist's office, so I was bummed. The next one I saw was a bit rougher with me, not really adjusting her style when I commented on it. But what made me not want to return to see her again was her judgmental attitude about my difficulty flossing at home.

Even though I have Joint Hypermobility and can bend my arms, hands, and fingers in all sorts of ways, I don't always have the strength or ability to grasp and hold items. And sometimes, it just hurts way too much. This can make things like writing with a pen--or flossing--particularly difficult. It's not a constant, but it's regular enough to cause major problems for me.

The hygienist was also fairly judgmental about my jaw and mouth pain. ("You wouldn't have this pain if you flossed regularly." "You can't really be in that much pain.")

So I stopped going. And that judgement and fear of pain kept me from seeking out a dentist for about 3 years.

But during that time, I learned that I was not uncommon. Apparently, Fibromites can frequently have jaw and tooth problems, including increased pain. (We also have a tendency to grind our teeth.) And with our increased sensitivity to pain, simple procedures at the dentist can be quite painful.

The problem wasn't me.

This led me to seek out a dentist who specializes in sedation dentistry, and I found a great one here in town. (Though, I discovered yesterday that I apparently can't tolerate the combination of drugs that they use for sedation, but that's another story for a different blog.) The best part of this office isn't the sedation, though.

It's the people.

It's the non-judgmental attitude of warmth and welcome when you walk in the door. It's the fact that I was able to share my concerns and worries and they were listened to and addressed rather than brushed off. And I'm pretty sure they want to work with me to help me through my challenges rather than brush them off.

The fact is that keeping good dental hygiene is essential to everyone. The infections and health problems that can happen can be horrendous and life threatening. I'm glad I took the time to find someone I feel comfortable with. While I won't say that going to the dentist is on my "favorite things to do" list, it's not on my "things I fear greatly" list.

My unsolicited dental advice for you? Take the time to find an office you're comfortable with. It's worth your health to do so.