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.

Chronic Pain and Suicide Risk (Or why aren't we addressing such the need for help in such a high risk group?)

I recently had a doc say to me "Fibromyalgia won't kill you."

I know this. I've dealt with this condition most of my life.

I shot back, "Yeah, I know. The other half of that statement is 'But it will make you wish you were dead.'."

Let's just say that particular doctor's visit didn't go well.

The reality is that there are many chronic pain conditions and illnesses that in themselves, are not deadly. That part is true. But the damage that these conditions cause to our lives, livelihoods, bodies, relationships, and even our daily interactions can and do place individuals with chronic pain and chronic illness at a higher risk for suicidality.

A recent article published by the American Chronic Pain Association (2016) reports that a recent survey they conducted showed that 47% of the respondents (chronic pain patients) have contemplated suicide. Given that 100 million Americans are living with chronic pain (according to the National Institute of Health), one would think that there would be more attention given to what is such a high risk group and such a large part of the population.

And frankly--even more concerning--is that the recent push from the CDC and other federal entities to limit the access of opiate pain medication has had an increasing negative impact on suicide rates. In short, since chronic pain warriors are having more difficult accessing the medication they need to control their pain, the suicide rate among this population is rising (Pain News Network, 2016).

Why are Chronic Pain Warriors at higher risk for Depression/Anxiety?

There are a number of factors that can contribute to depression and anxiety, including not enough sleep (or enough restful sleep), isolation, not getting enough Vitamin D, some health conditions, a chemical predisposition to mental health challenges, and many others.  For instance, if someone with Fibromyalgia has sleep disturbances, this is not only going to cause an increase in the level of pain, but it's likely to impact the person's ability to interact with the outside world (leading to increased isolation), and may start a cycle of poor sleep due to pain leading to more poor sleep and so on.

And then, there is the stigma. This comes from everywhere. It's in the judgement of every person who watches me get out of the car when I have to use an accessible space to the coworkers who wonder why I called in sick to the doctors who tell me I shouldn't feel this bad (when they themselves can't begin to fathom what I feel). It's from well meaning but misdirected individuals who offer the "cure" their brother's second wife's cousin is selling this week for all conditions. Maybe we have family and friends that we feel we're asking too much of or have become a burden to.The stigma is isolating as well.

And, of course, there is stigma in reaching out for help with mental health. There are the lack of resources for individuals reaching out for mental health. In addition, while there is an increasing understanding of the impact of chronic pain and illness on mental health, this is still a growing movement, so the professionals who are competent in chronic pain tend to be scarce.

How do we address this?

The good news is that there is a growing trend (Thanks Medicare!) to have patients of all backgrounds complete a Patient Health Questionnaire (PHQ) when they see their PCP. The PHQ is a screening tool for depression, and it also screens for suicidality. This can be a very useful tool, and since Medicare implemented requirements for screening tools to be utilized as a part of patient care, other insurance companies are noticing and following suit.

Social media has also been a great place for chronic pain warriors to find support from fellow chronic pain warriors, and some areas have in-person support groups. These can be great resources.

Ultimately, though, care for people like me has to be holistic and address my mental health needs as well as my physical health needs. This means all of the systems of the healthcare system need to come together to treat Chronic Pain Warriors as the whole person that they are (chronic pain and all). It requires an approach that is common sense in many ways, but is rarely put into practice: treat the whole person, not just the problem area.

And finally, medicine and the CDC need to realize that there is an appropriate place for opiate pain medications in chronic pain management. It's not necessarily the whole treatment plan, but it can be part of a comprehensive treatment plan, and for many people, it's a necessary part of treatment. It may be the only thing keeping someone going on with the fight against their pain.

If you or someone you know are experiencing suicidal thoughts, get help. The National Suicide Prevention Lifeline can be reached by calling 1-800-273-8255 or visit their site for live chat.

Supportive Animals (Or, the Blog Post Where I Get to Brag About My Amazing Dog)

About two and a half years ago, my husband and I went to the local shelter "just to see" the dogs. (I really should know better.  I'm the type of person who would take all of the dogs home if I could.)

During this time, I had really been struggling with health issues. My depression had hit an all time low, and physically, things were going downhill for me and the doctors couldn't figure out what was going on. (This was shortly before I received the additional diagnoses of Lupus and RA.)

While we were at the shelter, we came across this shaggy, mid size (about 50 lbs) collie mix, named Wilson who I connected with immediately. We asked about him, and the volunteer provided what little information was known about him, and asked if we'd like to play with him outside. The shelter had these great fenced play areas with picnic tables, and so I sat at the picnic table and got to know Wilson a bit better.

He approached me cautiously, not out of fear, but almost concern before turning and sitting on my foot, leaning his head back in my lap for me to pet. This was extremely significant because of past dogs in my family's life who had done the same with my mom. It was as if those animals who'd crossed over the rainbow bridge were telling me this was my dog.

A few days later, we officially adopted Wilson into our home. Initially, we were going to be the type of pet parents that didn't allow him on the furniture or feed him people food. (That didn't last long.) He was classified as an emotional support animal to help me cope with my depression and anxiety, but he seemed to sense how sick I was physically. Where he would play fully with my husband, tug on that toy harder, run faster, jump harder, he was gentle with me.

From the emotional and psychological standpoint, I call Wilson my Angel Dog. He's brought so much joy into our lives, made me laugh with his goofiness, comforted me when I'm having difficulties, and just bringing a sense of calm and peace.  But about a year ago, our very smart dog showed me how much he was clued into me.

I had had a really rough few days where I was essentially living off of pain pills and Glucerna. I spent the majority of the time sleeping and it was just me and Wilson at home.

About mid-morning, I was awakened by the feeling of being pushed by something. When I came to, I realized Wilson was laying next to me in bed pushing me with his paws to wake me up and he didn't stop pushing until I sat up on the edge of the bed. He then did his "I need to go outside" routine, and I stumbled through the house, heading toward the back door. But rather than go to the back door, Wilson stopped in front of the fridge, watched me for awhile, and then looked back at the fridge. It took me a minute, but I realized I was likely hypoglycemic. I grabbed a meal replacement shake out of the fridge, downed it, and only then would Wilson go outside.

I returned to bed for more sleep after he came back in, and a few hours later, found myself repeating a similar pattern. Again, he woke me up by pushing me, but this time it wasn't food he was after me to get, but water. And this time, he wouldn't let me go back to sleep forcing me to stay awake. (Which is actually a really good thing because otherwise I would not be sleeping at night.)

He has also helped keep me from having panic attacks, alerted me to low blood sugar episodes, and tried to warm my feet by laying on them when I'm having problems with Reynaud's. Wilson loves to snuggle...he just hasn't figured out that laying on top of me when I'm having a really high pain day is the way to go sometimes.  :)  Wilson tracks me at night, particularly if I'm having a really bad night, and will keep tabs on me. (The night after my most recent surgery he made things really interesting for me. Every time I got out of bed, he would move and lay on the floor so that I would have to step over him to return to bed. He made sure he knew where I was, but lifting legs over a dog after abdominal surgery isn't the most fun thing ever.)

I'm not bringing up this topic in my blog to just brag about how awesome my dog is, although he is pretty awesome. There are a lot of positives to pets in the lives of people, regardless of their ability or disability. But when you have a disability, there are also some considerations to take regarding animals.

So, Wilson provides a great deal of services to me. But Wilson, like any pet, requires a great deal of care and has his own needs. For some people with the types of illnesses that Chronic Pain Warriors deal with, the needs that a pet has are too great and are more of a responsibility than someone can handle.  That leads me to: what questions should one ask themselves when considering taking on a pet/emotional support animal/therapy animal/companion animal/service animal?

(There are a variety of differences between an animal that is a pet vs. emotional support animal vs. therapy animal vs. companion animal vs. service animal, and the laws that govern the type of animal and where they are allowed are far more detailed than I wish to get into in this blog. For people who are interested, I encourage you to look to the Americans with Disabilities Act and Regulations on Service Animals for further information.)

Questions to ask before taking on an animal

1. Why do I want this animal in my life?
  
Are you looking to adopt because you saw that Sarah McLachlan SPCA commercial one too many times or do you really feel ready to take on an animal with their needs? Have you researched the specific breeds/types of animals and temperaments?  If you adopt a puppy or kitten, are you aware of the increased care requirements you'll have for awhile? If this is a service animal, have you thought about the costs of training and education? These are all things to take into consideration.

2. Will this animal fit into my lifestyle?

Some Chronic Pain Warriors are still able to work full time, so is this animal going to be alone most of the day? If so, are they able to entertain themselves or will you return home to find things torn up? If you're fairly sedentary, adopting a high energy animal who requires lots of exercise probably isn't the way to go. Animals have personalities, too, so if you're a person who enjoys peace and quiet, bringing a barker home might not be the best way to go.

3. Can I afford this animal?

Vet bills, food, medication, treats, toys...it all adds up. And if your animal becomes chronically ill themselves or requires special food or medication? It can get even pricier.

4. On my bad days, will I be able to exercise/play with this animal as they need to be? (On my extremely bad days, it can be hard for me to let the dog out; is this something you would have to consider?)

5.  Is there support for me to turn to if I have to be hospitalized for a length of time because of my illness? 

Or even on those days where you suddenly find yourself stuck at the medical center for 13 hours, is there someone you can call who can help your animal out. I know Wilson can hold it for awhile, but a dog can only cross their legs for so long.

And ultimately, the question that needs to be answered is: Will this animal bring more joy and help to my life or will the animal cause too much of a burden on me to care for it in my present health state?

I can't imagine my life without Wilson in it, but I have the help of my husband for things like bathing him and making sure he gets enough exercise. Wilson is also calm enough of a dog that he doesn't require constant stimulus and while he has his hyper moments, that's not his constant state. He fits into this family perfectly.

I'm all for animals in our lives as I believe they bring great joy and value, but we owe it to those animals to bring joy and value to their lives as well.

A list of definitions from my medical chart.

Update (Or why I've disappeared for a while)

When I started this blog a bit over a year ago, I wanted to provide a glimpse of what it's like living with invisible illness.  Part of that meant educating on a variety of conditions.  I also wanted to make it a resource for others who were suffering.

But there's also the part where I have to be open about my experience and how my illnesses affect me.  And so, with some trepidation...

It's been a very rough few months for me.

I've been dealing with an increase in my pain fairly steadily over the past few months. It got to the point where I was having to take my PRN (as needed) Opioid pain medication nightly in order to sleep. In late February, after talking with my doctor, I decided to try a new medication that had been suggested to me over the past couple of years but I'd been hesitant to try.

Please note: nothing I say in this blog should be taken as medical advice. Please discuss any medications and medical concerns with appropriate medical professionals.

Naltrexone is an Opioid Antagonist used to help individuals who are addicted to Opioids to stop while helping their pain.  There has been some research that Low Dose Naltrexone (LDN) can be useful to help pain in individuals with Fibromyalgia.  The reported side effects are generally pretty minimal and well tolerated.

Well, by most, anyway.

Two days into taking the LDN, my pain had spiked significantly and I was experiencing other flare type symptoms. Four days into taking the medication, my depression and anxiety had started to significantly worsen. By day 5, I was incredibly labile and increasingly suicidal. On day 7, I woke up experiencing tactile and visual hallucinations. That was the point where I notified my doctor and stopped the medication.

I wish I could say the side effects immediately reversed upon stopping the medication, but even 2 1/2 months later, I am still struggling with the increase in both my depression and anxiety.  I began having almost nightly panic attacks that would keep me from sleeping and my suicidal ideations became very severe.  (My medication has been changed to include meds to address these issues, and over the last couple of weeks, things have started to improve mood-wise.)

Aside from the mood side effects, physically my pain and fatigue levels have been beyond ridiculous.(Shortly after stopping the LDN, I caught a nasty Upper Respiratory Infection that turned into Asthmatic Bronchitis that left me very ill for a month, so that hasn't exactly helped matters any.)

Currently, I am able to work...some.  It's exhausting. On days where I don't work, I sleep or rest the majority of the day. I've been slowly trying to incorporate other activities back into my life such as gardening, playing with the dog, spending time with friends, etc, but it's been slow going and adding those activities means that I'm recovering for the next day or two. Things that most people would not even think twice about require so much energy from me.

For instance, something that has become very taxing for me to do is talking on the phone. I already tend to avoid talking on the phone because of my hearing problems, but there is so much energy that is required to follow and track conversations in addition to struggling to hear, it wears me out too easily. There are a handful of people that I can comfortably talk to on the phone because they understand that I can only handle short conversations, but generally texting is best for me these days.

The cognitive challenges have definitely become more noticeable and frustrating. I'm not tracking conversations as easily and there just seems to be a fog over everything (thought-wise) that I've been fighting through. For someone who can usually multi-task and recite regulation from memory, it's beyond frustrating. I feel so stupid these days. I can't keep track of days or appointments, even with my reminders in place, and I'm not this flaky person. I don't want to be this flaky person.

I am fighting my way back, but it is slow going. My mood is slowing improving and I'm finding enjoyment in activities again. I'm finding my laughter again. I'm still exhausted and prone to severe anxiety attacks, but the medication is helping. It's a slow recovery, though.  Unfortunately, the combination of the slow recovery and lack of energy leading to isolation has made the mood recovery even slower.

Physically, there have been some new developments, and I'll be seeing several of my specialists this month to figure out the plan.  Not all of this is related to the attempt with the LDN; it just added to the situation to make it the perfect storm.

So, today, I'm going to focus on the time that I was able to spend with family, laughing at the goofy antics of our awesome dog, the beautiful plants growing in my garden, and the fact that I was able to give some very cool gifts to two very amazing women in my life.  It was a good day.

A list of definitions in my medical chart

Reality Bites (or How Invisible Illness Plays Out on "Reality Television")

So, I have a confession to make:  I enjoy watching reality television.

I know, I know.  It's not really based on reality and most would likely agree that it's not stellar television.  Part of the reason I enjoy it is that I love learning about people and getting into their lives. (Yes, that's the social worker in me.)  The other reason is it's generally pretty mindless, and quite frankly, I sometimes need to shut my brain off and watch some mindless television.

Years ago, I became sucked into the "Real Housewives" franchises (yes, multiple) on Bravo TV.  For the most part, the show has been a way to escape day-to-day drudgery and the homes and obviously different lifestyles were so far removed from my life that I couldn't relate.  I could watch without getting sucked in and it could stay mindless entertainment that I could laugh at (and sometimes, laugh at while rolling my eyes).

But I have to admit, the Real Housewives of Beverly Hills managed to suck me in in a different way. The last couple of seasons, one of the cast (Yolanda Foster) has been bravely coping and fighting Lyme Disease and the impact that it's had on her life has been featured on the show.  Chronic Lyme Disease can be debilitating, and it's changed her life in drastic ways (which she addresses on the show).  For the most part, her friends seemed to rally around her, and then...

Someone accuses her of having Munchhausen's Disease. Now, Munchhausen's is classified as a mental disorder where the individual makes themselves ill in order to gain the attention of medical professionals and others. (It's quite a bit more complicated than this explanation and is extremely rare.  In fact, there are some in the mental health field that deny that it exists and that all of the symptoms should be classified as Malingering.)  But, in reality, what this person was suggesting is something that everyone with Invisible Illness faces--"I don't believe you're sick."

One of the reasons this individual brought this up was because of the photos Ms. Foster posts on Instagram (which includes selfies of when she is ill and receiving treatments and alternatively, when she feels well and is able to enjoy her life).  I found myself yelling at the television as if I were watching a sporting match.

Here's the thing. Those of us living with Invisible Illness are sick. Some of us advocate and educate. Ms. Foster is brave enough to post photos of herself when she is ill and receiving treatment as a way to advocate and educate, and continues to be part of a cast on a reality show. I write a blog, train professionals how to work with individuals in the mental health field who are living with chronic pain, and provide mental health services to individuals with chronic pain. Others create memes and t-shirts to raise awareness.

But we are also people. We are people who have lives and enjoy having fun.  We do not always want to be sick.  We do not want to always live in the illness.  We want to be normal.  We have interests outside of advocating and educating and being ill.  On good days, we can even enjoy some of those interests.  It does not mean we are faking our illnesses.

A list of medical definitions in my medical chart.

Contraindications (Or My Meds Cause What Side Effects?)

Medicine in today's world is truly a wonderful thing.  Diseases that were once wiping out hundreds of people have been eradicated and viruses that were once considered a death sentence can now have their impact mitigated so that people can live normal lives.  Yes, science has come a long way and people are living longer, healthier lives.

Or longer, somewhat healthier lives.

Or, in some cases, longer, but not healthier lives.

Unfortunately, while there are many wonderful medical advancements in this world, many of these advancements come with some sort of downside.  It's a balancing game of outweighing the costs vs. benefits, and for the most part, taking the medicine or undergoing the procedure is of greater benefit than the risks of not taking the medicine or undergoing the procedure.  But while the overall benefits outweighs the risks, it doesn't mean that there aren't impacts of the medicine or the procedure that don't negatively impact the person.

Common complications of medications are side effects.  The fact is that each and every time a person puts something into their body, there is an impact.  Most of the times the impacts are good (or the positive impact outweighs the negative consequences).  For the most part, medicine would call side effects tolerable negative reactions to a treatment that helps treat/manage/cure a condition.  And--for the most part--they'd be right.

But those with chronic illness frequently tell the story as to how the side effects of some treatments outweighed the benefits of the medication.

The above meme is meant to be humorous, but unfortunately, there's quite a bit of truth behind it.

When I was first diagnosed with Fibromyalgia at the age of 15, I was provided with a prescription of Naproxen Sodium (which is now known as Aleve, and is available over the counter).  Nine months later, I underwent an Upper GI Series, they discovered an ulcer brought on by the medication, and that was the end of my experience with it.

The medication after that was Nortriptyline, a member of the class of Tricylcic Antidepressants.  It's an older drug, typically well tolerated, and this one lasted for a number of years.  Unfortunately, it stopped working.  I still haven't lost all the weight I gained while on it.

I can't do medications in the class of Selective Serotonin Reuptake Inhibitors (SSRIs), a class of antidepressants which contains Prozac, Effexor, Paxil, and others.  Unfortunately, I'm one of the people who experience an increase in suicidal thoughts while on those medications.  And yes, that sort of defeats the purpose.

I was on Gabapentin (Neurontin) for a while.  It's an anti-seizure medication which has also shown great impact on chronic pain conditions such as Fibromyalgia.  And yes, it helped the pain immensely.  It also negatively impacted my vision, and so no more Gabapentin for me.

My current medication list does contain medications that mitigates the side effects caused by other medications I take to control my conditions.  At this point in my life, my medication regime causes tolerable side effects.  I do recognize that there is a strong likelihood that that will change.  Either the side effects worsen or the medication stops working (or both), and then it's back to the drawing board to figure out how to manage things.

I also recognize that there may be a time in my life where I am on notoriously side effect ridden medications, such as chemo or Prednisone.  (I have been on Prednisone for short durations for asthma, and it's not fun.)

So how do I handle the issue?

• I'm up front with my medical team as to what side effects I find unacceptable and which side effects I'll tolerate.  
• I research the heck of out the medications/treatments that I'm on/undergoing and potential treatments.  I ask questions to the medical team.  If a new medication is suggested/recommended, I specifically ask "Are there any contraindications with my current medication list?"
• I track my side effects, particularly if I find them troublesome, to discuss with my medical team.
• And finally, as I've stated before in the blog, since it's my body, I make all final decisions.

Please do not take anything in this post as medical advice; this has been my own experience with particular medications, and you should discuss any medication concerns with your own medical team.

A link to the list of definitions of medical conditions I have in my medical chart

Pass on the Platitudes (Or, Please Do Not Tell Me to Get Well.)

There are a bunch of articles and memes out there that talk about what sorts of not-so-great things people say to those of us dealing with Chronic Pain/Invisible Illness.

But there's another category of things said that are meant to be helpful, usually come from well meaning friends, family, and acquaintances, but can tear us down just as much.  Here's a list of some of the most frustrating, but also, most common.

"Get Well Soon."

The conditions I have are chronic.  The damage that they've caused to my body is permanent.  I will have good days, but this isn't something that I'll recover from.  I'll never return to perfect health. There is no recovery from these conditions. There is no "getting well."
Statements like "Get Well" or "Get Well Soon" make me feel dismissed, as if either haven't been listening, don't believe me, or don't take me seriously.


"You Should Exercise More/Lose Weight/Eat a Certain Way [or fill in the blank with other helpful advice]."

First, anytime someone starts a sentence with "you should", my inner rebel (who I believe to be a 16 year old girl) laughs and says "make me."

Unless you're on my medical team and I've asked for your medical opinion and advice, I have no interest in what you think I should do with my health and body.  Your well-intentioned--but unsolicited--advice is not wanted.

If someone says something like this to me, I don't find it helpful.  I find it dismissing and in some cases, quite hurtful.


"My cousin's ex-girlfriend's brother's vet had that and tried XYZ treatment and is cured!"

I have to say that any approach that starts off listing a variety of family members or friends who have been "cured", it sounds like an urban legend, which takes away a lot of authenticity of the statement.

I've been going through this for a long time now and have run the gambit of treatments, both of the Western Medicine variety and the Eastern Medicine variety.  In the past, for a number of years, I successfully controlled my Fibromyalgia with diet, exercise, yoga, meditation, massage, and acupuncture.  Unfortunately, that is no longer an option, particularly since I now have conditions that must be controlled through medication otherwise I risk more damage to my body.

I can safely say that I have been on almost all medications that have been prescribed for Fibromyalgia at least at some point in my history.  The few that I have not been on have been because they're either contraindicated (I was on a medication in that class and it did not go well) or I refuse to go on it due to side effects (i.e.-Lyrica and the weight gain).

And there are people and organizations out there who attempt to profit off of people like me--those dealing with chronic pain/invisible illness and wanting some sort of relief from the pain and fatigue. Because of that, I'm pretty cautious these days about what I'll try.  So, I appreciate the advice, but please, save your breath.


"I Know How You Feel."

No.  You don't.  Even individuals who experience chronic pain cannot say that they know how another person experiencing chronic pain feels or what they're going through.  There may be certain circumstances you can relate to, but no two people experience these sorts of things in the same way.


"Just Think Positive."  "Think of All the Good You Have in Life."  "Think About What You're Grateful For."

These statements are so dismissive to someone going through a rough time.  Is it a good thing to look at things positively?  Sure.  But there are times in everyone's life when someone just needs to vent or needs support.  By saying these things, not only have you not offered support, but you've also dismissed what they're experiencing as something that's not important to you.  And since these conditions can start to encompass the entire being, you've just managed to say to them that they're not important to you.


"Other People Have it Worse than You."

Yes.  There are other people in the world who have it harder than me.  I acknowledge this.  It's one of the reasons I advocate for individuals living with Chronic Pain/Invisible Illness.  It's also why (in my professional life) I've chosen to work with and advocate for individuals experiencing Serious and Persistent Mental Illness.

But this statement is so hurtful and dismissive.  Imagine you've just gone through the worst day of your life, and a loved one says this to you upon you venting about it.  Doesn't feel so great, does it?


Helpful Things to Say
If you want to offer support, try these:

"I believe you."
"I'm here for you."
"How are you?"
"How can I help you?"
"Would you like to talk about it?"
"Thank you for talking to me about this."


A link to the definitions of conditions listed in my medical chart

Personal Costs (Or The Costs of Having to Let Go of Dreams)

At the age of 15-when I was diagnosed with Fibromyalgia- I had dreams of going to Saint Louis University as a pre-med student and then following that up with a stint at Saint Louis University Medical School.  My ultimate goal was to either be a surgeon or an ER doc.

I made it to Saint Louis U and started out as pre-med.  At that time, I really didn't like how managed care was progressing and wanted to be able to help people, but do it without insurance companies dictating my treatment plans, and so I switched to Social Work.  (The irony of this is that I ended up as the "red tape" in a managed care organization-a publicly funded managed care organization-for a number of years.)  But I made a conscious decision to change my major and focus of my education, and while there are definitely times I wished I had stayed the path into medicine, I'm mostly happy with the career path I've chosen.

I want to emphasize that I chose those changes.

I've worked in a variety of fields under the social work umbrella, but my primary focus has been mental health.  I've got experience working with kids and adolescents, adults, families, foster care, adoption, trauma, serious mental illness, and a variety of other areas, but one of my biggest areas of expertise is that of mental health policy.  I worked in Quality Management and Compliance for a number of years, chairing meetings, consulting with county and state personnel, and just generally making a pretty good name for myself throughout the state for my knowledge and participation in the policy arena.  I was one of the best in the field.  I was on track to become a Mental Health Director one day.

But then my health had other ideas in mind.  I went from being a non-stop one woman show (because of the way the county I worked for was structured, I ended up with a lot of oversight responsibility) to barely being able to get out of bed most days in a matter of a couple of years.

Bye-bye dream of being a Mental Health Director.
Bye-bye to being a force to reckon with in the policy arena.
Bye-bye to my good reputation.
Bye-bye to my working full time.
Bye-bye to a solid retirement plan.

Please don't get me wrong.  I love what I am doing now.  I am still in mental health, working as a clinical director, and getting to do a lot of things I really enjoy like training and clinical supervision. I couldn't ask for a better group of people to work with.  But I am not working full time.  (I am also building a private practice.)  And I would have liked to been able to choose this path in a way that didn't damage my reputation or my financial stability.

What other things have these conditions cost me?

I don't have the energy to spend as much time as I'd like with friends and family.
I don't have the energy/lack of pain/hand strength to enjoy being out with my camera as I once did.
I don't have financial security.
Because of the financial changes and the amount of debt, I worry constantly (and the added stress isn't helpful for any of the conditions).
New cars, new clothes, fun trips--those things that many seem to take for granted fall way down the list when it comes to buying things.

And for the people who say things about individuals with invisible illness not wanting to work?  I've generally found those with invisible illness tend to be an overachieving sort of people until our bodies give out on us.

A link to the definitions listed in my medical chart

Incongruence (Or why I can be smiling and still reporting a pain scale that's off the charts.)

In mental health, we spend a lot of time evaluating a person's mood (what they're feeling, how they're feeling, if they're happy or depressed --or any variety in between) and their affect (how they appear). Most of the time, in the general population, people reflect how they feel.  So if they're happy, they're smiling; if they're sad, they're not necessarily smiling.  In the field, in these cases, we say that someone's mood is congruent to their affect.

But sometimes, people who are happy do not reflect this.  Or they may not appear to be much of anything, but they report differently.  In these cases, we indicate that this person's mood and affect is "incongruent".  (Yes, spellcheck, that really is a word.)

In my 20+ years of living with chronic pain and invisible illness, I learned that I don't want to live in the pain.  I'd rather be smiling and laughing.  Humor tends to be my default.  (And I'll be the first to make jokes about myself.)  Anyone who's ever been in one of my trainings or spent time with me as a supervisor knows that I have a dry sense of humor and I'm not afraid to use it!  (But only when appropriate of course.  :) )

But I also tend to use it with my medical team.  I tease my acupuncturist that he's my monthly torture appointment (those cups hurt!) and I joked with my rheumy the other day that my pain spike is related to the seasonal change that we have yet to have, but that my body says we should be having. Humor also tends to be my mask.

I've become so practiced at wearing my mask that the only people who see me not wearing it are those who are the closest to me.  The ones who know me really well can see through the cracks in my mask when I'm not doing well.  They can see past the humor.

But the doctor I've just met for the first time?  They only get to see my mask.  I might not make jokes with them, because they won't realize I'm joking, but they get my pleasant affect and demeanor.  And yes, I get double takes when I present as pleasant, smiling, and report an '8' on the traditional pain scale.  Or I receive looks of disbelief.

What a lot of people don't realize is that handling an 8 with humor--when possible--makes that pain feel better than handling an 8 with depression or anger.  It's still an 8, but with a little bit of humor and pleasantness, I can fake my body into believing that the pain is actually a 7, even if it's just for a few moments at a time.

This incongruence is why I have such a difficult time when medical professionals attempt to rate someone's pain only by how they're presenting, rather than asking for a self report.  What someone else's definition of what a particular pain level should be based on what an individual presents as--particularly if they have never experienced said pain level--isn't an accurate reporting tool.  The pain scale is really a self-reporting scale.  It's my experience of the feeling of pain in my body.  That experience--the sensations of pain, the location, the quality, the severity--will change from person to person.  My "8" might be someone else's "10" or it could even be someone else's "4".  But I've dealt with this so long that there are extremely few medical professionals who could come close to evaluating my pain level by studying my facial expressions and body language.

Now, as a caveat, are there people who will report high pain levels to get the "good stuff"? Absolutely.  But even those people should not be criminalized; addiction is a disease and should be treated as such. And by assuming any person who reports a high pain number with an incongruent presentation is simply drug seeking?  That's just doing a disservice to individuals experiencing chronic pain.

A link to the definitions of conditions I have in my medical chart.

Suppressed Immune Systems (Or My Body Is So Busy Attacking Itself, My Immune System Can't Fight Things Off)

It's a busy day at work and suddenly, from across the room, someone sneezes. Immediately, my senses go on high alert and my mind goes into Def-com 5 mode, running through the lists of my "avoid illness" supply list at home.  Or I'm spending time with family, and someone coughs a bit, I try not to make it obvious as I avoid being close to them.

And no, I'm not a hypochondriac.

The unfortunate reality is that a common cold or the latest flu virus that makes a "normal person" sick for a few days can knock someone like me out for a few weeks.  The fact is that when someone's immune system is occupied with attacking one's own body, there's not a lot left over to fight off the viruses and bacteria that are out there that makes people sick. And so it means that it doesn't take much exposure to something to make one of us sick and we can get sicker with the bug and for longer than the average.

All this in addition to the pain and fatigue--how did we get so lucky!

I currently have a cold that my husband brought home with him.  As soon as he felt something coming on, we went through the steps.  Zicam for both of us, check!  Healer's Chai Breath Drops for me, check! Halls Vitamin C Drops, check!  He got over it very quickly, in maybe a day and a half.

I'm on day 5 of the cold, and it seems to still be picking up steam.

Chronic Pain Conditions, Autoimmune Conditions, and all that are associated already tend to isolate those individuals dealing with them, but to have to avoid people during cold and flu season?  That tends to just add to the feelings of isolation.  So how does one deal with all of this?  Please note: This is not a substitute for medical advice from your physician. Always seek out a physician for medical advice pertaining to your health circumstances.

Here's a few tips I use to try to stay as healthy as I can:

• Good sleep hygiene
• This means going to bed at the same time and getting up at the same time everyday;
• Minimizing television and other computerized device usage in the evenings before bed; 
• Minimizing caffeine intake in the late afternoon and evening; 
• Minimizing alcohol intake (it can keep people awake and disrupt sleep); and
• Minimizing sugar in the late afternoon and evening.
• Good hand hygiene
• Not sharing utensils or drinks
• Regular light exercise
• Stress Management techniques
• And the utilization of homeopathic/holistic treatments when necessary.  (Please note that I am one of those individuals unable to take the flu vaccine, and the common antiviral medications make me more sick than the virus does typically.)

The fact is that I know I won't be able to avoid getting sick in some instances, and then I rely on water, tea and honey, homeopathic treatments, and good ol' soup (seeking medical attention when the symptoms appear to be more severe or different from what is associated normally with a cold or flu virus).  

And I tell my family to buy stock in Kleenex Tissues.  :)

Definitions of Medical Conditions Listed in My Medical Chart

ADHD and Fibromyalgia (Or...Squirrel!)

Okay, so I have something to admit.

I get distracted easily, especially if I'm dealing with a lot of stress. I've joked for years that I had some weird form of Attention Deficit Hyperactivity Disorder, but as it turns out, there have been a number of studies showing that there is a link between ADHD and conditions like Fibromyalgia and Chronic Fatigue. And when you think about it, it makes a lot of sense.

Disrupted Sleep
Let's face it: when you don't sleep well at night--or sleep well consistently--it impacts the ability to concentrate and focus on tasks. And Chronic Pain Warriors are notorious for disrupted sleep. Since we have disrupted sleep, our ability to concentrate and focus on tasks can decrease, and the more the sleep is disrupted, the more challenges we have.

Increased Sensitivity to External Stimuli
Working in mental health, I've worked with kids who deal with ADHD, and I once heard a description that I think describes the experience perfectly:  Sitting in a classroom, trying to focus on the task in front of the student, but the brain keeps picking up on things like the ticking clock or the rustling of papers and it makes it difficult to focus on what the teacher is saying.

Those of us with conditions such as Fibromyalgia have an increased sensitivity to sounds, smells, and other external stimuli. So, the ticking of the clock can be extremely distracting (and potentially irritating).  In times of increased stress, our sensitivity can increase, making our ability to focus even more challenging.

Increased Fatigue
This is also linked to problems sleeping, but living in a body that is in constant pain is fatiguing. When the body--and brain--are fatigued, the ability to concentrate and focus on tasks becomes more challenging.

Co-morbid Conditions
First, "co-morbid conditions" means other conditions that tend to exist in addition to the "main disorder".  For instance, for individuals with Fibromyalgia, it's not uncommon to also develop conditions such as Reynaud's Syndrome, Hypoglycemia, or Migraine.

Using these three as examples, if you're dealing with poor circulation in your extremities, such as in the case of Reynaud's, it's going to be difficult to focus on things when your hands and feet feel as if they're freezing off.  Or in the case of a Hypoglycemic moment (low blood sugar), the ability to focus can fly out the window. And Migraine? Well, anyone who has experienced the nausea, light sensitivity, and feeling of inexplicable pain in the head can tell you how hard it is to focus when one of those things hit.

While I was writing this post, I found myself distracted a number of times by the cars driving by outside, the sound of the A/C clicking on, the show on the television, my phone, more cars driving by, by a piece of paper on the front lawn, by my dog dreaming on the floor, by the headache that's starting to form because of this cold that I've caught....

The list can go on and on. In times of higher stress (physical, mental, and/or emotional), my ADHD is worse. It can be exhausting, working to focus on tasks, particularly if I find myself getting distracted easily. My husband has learned that if he wants to talk to me about something, he has to make sure he has my full attention before starting the conversation. It's not uncommon for me to become distracted by my own thoughts while I'm having a conversation with someone. It's definitely worse when I'm having more stress or pain.

The biggest lesson that this has taught me is that I need to slow down, focus on one thing at a time, and be gentle with myself when I'm more distracted.  I've learned to laugh it off at times, despite the fact that in a world that moves 100 miles an hour, it's not the easiest thing to do. It takes time, practice, and patience.

Be gentle with yourself today. Wishing you low pain, high energy, and laughter.

Definitions of Medical Conditions Listed in My Medical Chart

Everyday tasks that become challenges for Chronic Pain Warriors/those with invisible illness

In the field of mental health, we often talk about a client's ability to perform Activities of Daily Living (or ADLs, because we mental health types tend to talk in alphabet soup). These are activities related to hygiene, ability to cook and care for oneself, ability to complete chores, ability to function appropriately in social settings, ability to budget and manage finances, and just generally things that most adults are able to do for themselves.

There are times when adults aren't able to complete ADLs for themselves. Illness tends to be a big factor in this, whether it's physical or mental illness. Those who know my professional persona typically see someone that's fairly high energy, on-the-go, jumping from one task to the next, being the calm in the storm, great in a crisis type of person.  I'm the one who can strike up a conversation at the hair salon or in the grocery store with complete strangers.  It's not fake; I genuinely care about people and I genuinely enjoy what I do.  I enjoy what I do for a living, and I want to be the kind of person other people enjoy working with.

But I have to admit, it's an act. I don't fake being sick; I fake being well.  And yes, there are times when I can be considered someone who is unable to complete their ADLs.  There are many everyday tasks that can be difficult for individuals with chronic pain/invisible illness to complete.  Here are a few things that can be challenges:

Showering
Showering can be an interesting experience.  Many people with autoimmune disease/fibromyalgia/chronic pain experience a condition called Dysautonomia, which can cause exhaustion, tachycardia (fast heart beat), and the feeling that one might faint (or that one might actually faint).  While the heat from the shower can help ease some of the pain and relax muscles, the heat from showering can also cause other problems.

For someone like me, without a working internal thermostat, the heat can cause me to overheat quite easily.  Conversely, a cooler shower can also cause problems because the cooler water can trigger my Reynaud's phenomenon.

It's not uncommon for me to sit in the tub of the shower to bathe while the shower is running, or to take baths and use the handheld shower-head to wash my hair.  But there are days when bathing in the morning just does me in for the day.

Cooking
I love to cook, and I'm a pretty good one.  There's nothing quite as exciting as getting new recipes or walking through the produce section of a Whole Foods or a farmer's market during the summer months and seeing all of the great produce.  I can come up with fantastic recipes off the top of my head, and I love cooking with fresh herbs from my garden.

But I had to learn awhile ago that I had to make a choice.  After working all day, I don't have the energy to cook meals.  Some days, I barely have energy to heat something up in the microwave. Sometimes I just hurt too much to stand any longer.

This is where it becomes a trade-off. I'm fortunate in that my husband is willing to do much of the cooking and I try to help with finding easy and health recipes that can make leftovers. I still get to cook at times, but it's usually relegated to weekends and I usually throw something together for the crock pot.  I have to be honest, though.  If it weren't for him, ensuring that I ate regularly would be a problem.

Cleaning
Flat out, I pay someone to come clean regularly. I learned a long time ago that if my priority was being able to work that meant two things when it came to cleaning: 1) I wasn't going to be able to work full time and clean my house regularly and 2) paying someone else to clean is a necessary expense for my health.

Now, housecleaning happens every other week, and so we still have to do things like dishes and laundry and general day-to-day cleaning, and that can still be a challenge.  I've had to be okay with shortcuts on some things.  Again, my husband has had to take on more than his fair share of chores. And I've had to learn to ask for help...which I'm still working on.

Paying Bills
This is where brain fog can really cause problems.  It's so easy to simply forget to pay a bill unless there's some sort of system in place.  For me, I actually put which bills to pay when on my calendar on my computer and my banking is all online.  (The issues with my hands have become worse over the last few months and typing is infinitely easier for me than writing checks.)  But I admit, there are times when due dates slip by.

Part of self-care means taking care of these activities. There are some aids to help with showering and cleaning, but it can also mean sometimes those of us dealing with Chronic Pain/Invisible Illness need to reach out and ask for assistance. It's hard to admit that one has trouble with tasks that a "normal person" takes for granted, particularly when we're talking about a disability that's invisible.

To friends and supporters of someone dealing with Chronic Pain/Invisible Illness, be there. Be willing to listen and support. Don't judge. Don't make jokes about these sorts of things. Be honored if they ask you for help and support, because that means they trust you.

To the Chronic Pain Warriors/Individuals with Invisible Illness, let your supporters help you. Be gentle with yourself. And do what you need to do to take care of yourself, even if it means having to put other things on that "to do" list aside.


Definitions of medical conditions listed in my medical chart