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

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.

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

The Challenges Chronic Pain can Place on Relationships (Or Chronic Pain is SO Not Sexy.)

Relationships--whether they're romantic or platonic--are difficult without any additional factors.  I'll talk about friendships and chronic pain in a future blog post and so I'll be focusing on romantic relationships for the purpose of this post.

The fairy tales would have us believe that the difficult part of relationships are the courting/dating/getting to know each other stage and then it's "happily ever after", but anyone who's been in a serious relationship for any length of time (and yes, I'm including marriage/domestic partnerships in this as well) will tell you that the hard work starts after the honeymoon stage and continues on throughout the length of the partnership.  It's hard work when both parties are healthy. But, when one is sick, it adds another layer of stress onto the relationship.

Let's look at a scenario.  Think about a wedding you may have attended or a wedding you saw in a movie or show that used the vows "In sickness and health."  Usually, both parties are happy and shiny, and the words "in sickness" don't really sink in.  It's an abstract concept.  "Of course, I'll stick by my loved one if they're ill" is easy to say when their loved one has only had a cold during the course of the relationship until this point.  Chronic pain/chronic illness is a completely different ballgame.

I'm very fortunate in my marriage.  My husband knew I was dealing with Fibromyalgia when we met. During the years before we got married, he saw me at some of my sickest points. Still, neither of us could have predicted the two surgeries I've had or the other diagnoses to come along or how my health would decline and that's added quite a bit of stress, but he understood that there would be good days and bad days.  He understood that my desire to work and live my life meant that he would have to take on more of his fair share of the household duties.  (And when it was determined this wasn't a strength of his, the housekeeper we invested in was the best for both of us and our relationship.)  This doesn't mean he doesn't get frustrated with me or my body at times; he's only human.  But in many ways, because we've dealt with some pretty serious things, we don't get caught up in the "small stuff drama" as much.  (One positive thing about illness is that it will put things into perspective.)

I know a lot of Chronic Pain Warriors who have not been as fortunate.  Many individuals who have been diagnosed later in life have gone from healthy (prior to marriage or commitment) to chronically ill, and their partner doesn't get it.  And quite honestly, I understand.  I see both sides of the issue. The ill person who was once full of life has now had their life reduced to being sick and their own frustration at not being able to do everything they once could is high.  But their partner--perhaps despite saying they'd stick around "in sickness"--didn't sign on for this.  The healthy partner sees how the sick one has changed, and in many cases, now becomes a caregiver for the sick partner.  The relationship dynamic has now changed.  There may be feelings of resentment on both sides of the relationship.  The caregiver now sees their partner in a different way and may feel less than romantic feelings toward their partner, which can really change things.

Please do not misunderstand me; I'm not saying that romantic relationships have to fail when someone is chronically ill.  Many relationships fight their way through the battle and come out stronger.

Communication is key--constant, open, and honest communication.  The Chronic Pain Warrior needs to communicate their needs, their frustrations, and their desires and the partners needs to communicate their own needs, frustrations, and desires.  It's important to be able to communicate openly about all of this, because both sides have needs, frustrations, and desires, and not being able to acknowledge or communicate them is only going to lead to resentment.

And it's not an easy thing to listen to your partner tell you, "I'm frustrated with you because..."  It requires a certain level of openness and maturity to not respond with, "Well, yeah?  I'm frustrated with you because...!"  But if you can both communicate what you each feel challenges are, that leads to the opportunity for a conversation that can create solutions, or at the very least, clears the air of any lingering resentment.


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Since this is a post on romantic relationships, I would be amiss for not discussing the impact of chronic pain on a sexual relationship.  (This is the Not Safe For Work (NSFW) portion of the blog.) For those who identify as asexual and are in relationships, this may or may not apply to you.

There are people out there who enjoy pain in a sexual manner, but I have yet to meet a Chronic Pain Warrior who's a masochist.  (Not that they don't exist, just that I haven't met one yet.)  In my experience, people who experience chronic pain find that it doesn't add to feeling sexy. Fibromyalgia, Lupus, and other invisible illnesses can also impact reproductive systems, adding to more pain and discomfort, which can account for low libidos. The fatigue that's associated with these conditions can also be problematic; who wants to have sex when you have no energy?

I want to address an issue that may make me very unpopular.
I belong to a number of Chronic Pain/Autoimmune Disease/Invisible Illness support groups, and the following question occasionally comes up:  How do I get my partner to understand that I'm in pain and can't have sex with them?

Typically, the individuals posing these questions are women and they're referring to their male partners.  (Again, this is not to say that men don't experience chronic pain.  Chronic pain can impact all genders.)  And the responses are typically from other women lamenting how "men don't get it" and "he'll just have to deal with [not having a sexual relationship]".

I don't agree with this stance.  And before anyone lam basts me in the comments, hear me out. Sex is healthy.  It raises endorphins (which can improve mood and decrease pain level), and increases intimacy and connection with your partner (which can also improve mood).

I'm also an advocate for couples creating their own definition of "sex."  There's this heteronormative idea that "sex" is only penis-in-vagina penetration, but people all over the sexual orientation spectrum can inform couples differently.  And while what may work for one couple may not work for another, it doesn't make it any less sexual or intimate.

I'm an avid reader of Dan Savage, advice columnist who can be somewhat controversial at times, but he makes some great points when it comes to mismatched libidos negatively impacting relationships. That happens when both parties are "healthy", but what happens when it's an illness that's caused a rift in your sex life?  Simply refusing to acknowledge the sexual needs of your partner isn't fair to them.  And you might be refusing to acknowledge your own sexual needs as well.

Because it's okay to have a disability AND be a sexual creature.

What many don't recognize is that people with disabilities (including chronic pain) can have desires to be sexual as well. There may just need to be some workarounds to make things happen. Here are some resources for the over 18 crowd:

• Good Vibrations- A great place to shop for toys and stuff, but also a great resource for education and support.  They are extremely "woman friendly" and cater to all genders and sexual orientations.  They have extremely knowledgeable staff, and if you're in the California Bay Area, check out any of their Bay Area locations.  (And check out their articles on Sex and Disability.)
• Liberator - In short, they sell furniture for sex.  Their wedges and ramps can provide extra support, which can be very helpful for individuals with chronic pain and conditions like Hypermobility Joint Syndrome.  The furniture is constructed out of sturdy foam that's lightweight, and it can also be used for restorative yoga poses and meditation.
• Book:  The Ultimate Guide to Sex and Disability by Miriam Kaufman, M.D., Cory Silverberg, and Fran Odette is a great resource for a multitude of disabilities, including Chronic Pain

Are there times when sex just can't happen? Of course. It all boils down to open and clear communication with your partner.


Definitions of Medical Conditions Listed in my Medical Chart

The Expense of Chronic Pain (Or can I afford my groceries and my prescriptions this month?)

Chronic pain, like any chronic illness, is expensive.  In addition to the time spent in doctors appointments, medical tests, procedures, and everything else healthcare related, the amount of money that individuals spend on healthcare is huge.

Individuals with chronic pain spend, on average, $1000 per month on their healthcare. According to Johns Hopkins University, the annual cost of chronic pain in America is upwards of $635 billion a year.  This includes costs such as lost time from work and disability claims in addition to the costs to the healthcare system.  So, let's have a real conversation about the costs and factors here.

"Affordable" Healthcare

Before I jump into this, I want to state that I have absolutely no interest in getting into a political debate and my writing on current legislation is based on my professional experience in healthcare administration and my personal experience as a healthcare consumer in addition to the legislation and reported consequences of the rates of reimbursements.
The Affordable Care Act has been met with a lot of criticism, but the intent behind a plan for national healthcare was to address a few major problems facing the healthcare system:

1. Overcrowding and inappropriate utilization of Emergency Resources.  Emergency Departments across the country have been dealing with overcrowding and long waits for years, and the problem is only getting worse.  This leads to really long wait times for care and using resources that had been allocated for emergency services for reasons that are not emergency related. (And frankly, emergency room visits are expensive!)
2. Individuals who are not insured are unlikely to seek out preventative care and will frequently wait until it's an emergency situation (or close to it) to seek out care...and they visit the ER/ED to do so.  The lack of preventative care leads to a worsening of conditions that are treatable and preventable, leading to either needing (more expensive) treatment or, unfortunately, an untimely death that could have been prevented.  (And did I mention that emergency room visits are expensive?)
3. With the increase in ER/ED usage, high cost of usage, and lack of insurance coverage (or reimbursement rates), who pays for the services rendered and resources utilized? Unfortunately, the costs have to be covered somewhere, and so the price of healthcare gets jacked up elsewhere to cover the costs. 
4. And an issue not directly related to the challenges of the emergency resources, there was a lack of coverage for anything that was considered a "pre-existing condition", which is particularly problematic for individuals with chronic illness.

So, the intent behind it was to get everyone covered with some sort of healthcare coverage (which was supposed to be affordable--I'll get to that in a moment) which included preventative care, so people could have better overall health leading to better long term health outcomes.  Of course, the ER/EDs are still available to emergency treatment, but the hope was to decrease the need for people to go to the ER/ED rather than primary care.  It sounds like a win-win.  Except...

Has anyone checked out the cost of health insurance?

There is a larger section of the population who now qualifies for fully subsidized healthcare coverage under Medicaid.  Medicaid covers quite a bit of healthcare costs without a cost to the patient, and Medicaid is publicly funded.  Many people are covered under their employer or spouse's/domestic partner's insurance coverage, which can range from great coverage with little cost to the employee to not-so-great coverage with a great cost to the employee. And then there are millions of people who are in the gap between the two, and have utilized sites such as HealthCare.gov or, in California, Covered California to find insurance coverage.  There are different levels of coverage that are available and recommended based on how often someone may access care vs. how much they want to pay out of pocket for deductibles and doctor visits vs. how much one wants to pay for premiums.

So for people in the unsubsidized groups, it can get really pricey.

Up until recently, I was enrolled in a High Deductible Plan where I had to pay for services (including all tests, doctor's visits, prescriptions, etc) out of pocket until I reached the deductible of $5000, but my employer covered all premiums, and after I paid the deductible, I had no co pays for anything. Using the Health Savings Account, it actually worked out fairly well...I could divert the money I would've spent on premiums to the HSA and ended up saving money in the long run.  This was actually a good plan.
But some High Deductible Plans still have co pays, so the insured ends up paying the high deductible and then starts paying the co pays for each office visit, prescription, and whatever co pays are required.
So, healthcare is expensive.  Having spent time on High Deductible Plans, I have had the opportunity to see how much my doctors' visits are, how expensive my blood tests are, and (in particular) how expensive my prescriptions are.  It's been eye opening, and I'd like to share that with you.

Where are the expenses?
(I am using myself as an example; some individuals with chronic illness will have more expenses, some less.  And since chronic illness and chronic pain can go in waves, there are some months where there are very few-relatively speaking-healthcare expenses and some months where the expenses are high.)

In the past year, I've had:

25 doctors' visits (at about $150 per visit)
5 ED visits (at about $800 per visit)
30 or so lab tests (cost depends on the specific test)
5 medical tests (ultrasounds, scans, etc.) (Again, the cost depends on the specific test)
1 invasive medical procedure (REALLY expensive)
1 major surgery (REALLY, REALLY expensive)

Regarding prescriptions, I regularly take 5 prescription medications daily (in addition to the supplements I have to take).  (Side note:  I joke when I say I take a handful of pills on a daily basis, but in truth, I take massive amounts of pills on a daily basis just to keep me going.)  And these do not count the high amount of prescriptions I have that are designated "prn" (or "as needed").  My nightstand is a pharmacy.  Our medicine cabinet is filled with bottles.  We have a space in the kitchen for medications that need to be taken with food and supplements to be taken in the morning.

Fortunately, all of my prescriptions are now generic, however due to a shortage in one of the medications, the cost suddenly jumped from less than $20 for a month prescription to $180 for a month for a generic medication!  At one point, I was paying close to $300 a month for all of my prescriptions, and this is on top of the other healthcare costs.

And then there are the costs of healthcare which insurance (or at least my insurance) doesn't cover. My acupuncturist is $75 and I see him once every three weeks.  My massage therapist is a monthly visit at $100.  My supplements to help me sleep?  Add another $50/month to the bill.  My gym membership--which I use for the pool and the weight training portion of my treatment plan--is $55 per month.  The essential oils and other topicals I use on a regular basis to manage my symptoms? Add another $100 to the monthly budget.

These aren't "incidental" costs.  These aren't optional costs.  If I want to stay healthy (or as healthy as I can get), I have to stick to my treatment plan.  Health shouldn't be optional.

Final Note:  And there are programs to help offset some costs, such as prescription medication. (Unfortunately, I don't qualify for any of them.)  But many pharmacies can assist you in working with those patient assistance programs if you have difficulty paying for your medications.


Definitions of Medical Conditions list in my Medical Chart

Don't Judge Me on What You Can't See (Or The Invisible part of "Invisible Illness")

I read another post on FaceBook today about a young woman who legally parked in a disabled accessible space (with her placard hanging from the rear view mirror) who received a nasty note on her windshield because she "took a spot from a person who was actually handicapped."  The post went on to detail that the young woman has Lupus. The fact is that this sort of judgement shouldn't happen.  If someone has a disabled placard, that's between them, their doctor, and the DMV.  (If someone parks in a accessible spot without a placard or plates, it's okay to say something.  In fact, please do.)

This isn't the first time I've read of individuals with invisible illness being harassed over their legitimate use of accessible spots.  Heck, it's happened to me a few times.

This is what someone generally sees when I get out of a car: A youngish woman who doesn't require assistance walking (most of the time) and has no discernible disability who can walk at a moderate pace.

There's a lot they don't see.  They don't see that I'm likely in a great deal of pain from walking.  They don't see that I don't have the energy to park further away and still be out and do what I need to do. They don't see that when my body says "I'm done", it doesn't give me a lot of warning.  They don't see my balance issues or my dizzy spells and they don't know that I'm prone to tripping over my own feet and injuring myself.  They don't feel my heart pound from movement when I'm particularly fatigued.

This occurs in any situation where someone is using something deemed "accessible" but has an invisible disability.  And quite frankly, no one should have to explain to anyone why they require use of disabled accessible items, such as parking or the bathroom stall.  It's no one else's business.

I don't have any sage advice for dealing with people making ignorant comments.  Over the years, I've developed a comfort level confronting comments such as these in a direct, yet diplomatic manner. But it's not easy for everyone to do that, and I completely understand those who choose to ignore it and say nothing.

To the people who pass judgements on us, learn our stories.  We don't share the same story, our pain isn't the same, our experience isn't the same, but you don't need the specific reasons for why we require accessible spaces and places.  Despite what you see, we ARE disabled, and that's something we'd prefer you accept with no comment.


Definitions of Medical Conditions Listed in my Medical Chart

Fatigue and Autoimmune Disease (Or When did I have these lead bricks attached to my extremities?)

I've been meaning to write the post on fatigue for awhile, but I've been way too tired to compose my thoughts.

(And I wish I were joking when I say that.)

The fatigue of conditions like Fibromyalgia, Lupus, R/A, Chronic Fatigue Syndrome (now known as "Systemic Exertion Intolerance Disease"), and other Autoimmune Conditions (or conditions that mimic autoimmunity) isn't just a feeling of being tired.  It's not something that can be resolved with a nap or a good night's sleep.

The fatigue--much like the pain--is always there.  There are days when it may be "fatigue lite" and the fatigue isn't so bad, but there are also days when it can be extremely debilitating.  Each person experiences their fatigue differently, and just like the pain, it can be unpredictable.

I recently read something that stated it takes a person with Fibromyalgia 5 times more energy to complete a simple task than someone who does not have Fibromyalgia.  I'm not sure if that's true--or if it's simply a matter that it requires so much more of the little energy we have combined with the lack of physical ability and/or cognitive ability due to the fatigue--but it highlights a point that the fatigue of these conditions is one of the biggest challenges to living with them.

The fatigue impacts everything.  Simple, everyday activities are made just that much harder by fatigue.  And if it's a really bad fatigue day, those activities may be impossible for the person to perform.  For me, I can handle the pain relatively easy, but the fatigue--particularly if it's a severe fatigue day--is what will completely do me in.

The fact is that fatigue is a major part of conditions like these.  Chronic pain fatigues the body.  The assault that our bodies go through from the autoimmune conditions fatigues us. To those who don't experience life with chronic pain/invisible illness, it can be difficult to fathom how the fatigue can feel.

Fatigue isn't fun, but there are a few things that I've learned over the years that can help with it:

• Regular light exercise.  Look for an upcoming post on this topic, but in short, activities that get your blood pumping like walking or aqua aerobics can be great.  
• Practice good sleep hygiene.  This will also be an upcoming blog topic, but you want to try to keep your sleep schedule as regular as possible. A few tips now? Avoid television and electronic devices before going to bed, avoid exercise right before bed, and keep the same schedule for sleeping (i.e.- go to bed at ten every night, wake up at 6 every morning).
• Spend time outside.  Time spent in sunshine, fresh air, and nature has been shown to improve mood, decrease anxiety, and gives you Vitamin D.
• Avoid caffeine and sugar. Yes, it can be a quick boost in the moment, and even I've been guilty of using these trying to get through the day, but while they provide a quick boost, the crash tends to be harder and meaner.
• Get rest when you need to.  One of the biggest challenges with any of these conditions is difficulty falling asleep and staying asleep, and so "rest" doesn't necessarily mean "sleep".  It can mean just sitting with your legs up for a half hour or doing something mindless, like watching a funny movie.
• Manage activities.  "No" is a very important (and underused) word.  No one can do it all, and in order to focus on your health, you'll need to prioritize activites and you'll likely have to turn down activities.  And that's okay.
• Manage stress.  This corresponds to "manage activities", but developing coping skills to manage other stressors is also extremely helpful.  
• Get creative.  Television can be a great way to escape for a little while, but it can also be an easy way to suddenly realize you haven't moved in 8 hours. Doing something that may not be active, but that can engage the mind a little, can be a good thing.  For instance, I enjoy knitting. If my hands are really bad that day, but if I can hold a pencil, I'll color mandalas.  
• Meditation.  Meditation can be extremely relaxing and healing.  This doesn't mean you have to find a cushion to sit on and chant "Om" for hours on end. (Although, if that's your preferred style of meditation, go for it.)  Guided imagery can be a great tool, and there are several meditation aps on the market today (I love Simply Being.).  Another great tool is restorative yoga or Yoga Nidra.  The more you practice meditative techniques, the better you'll get at it.
• And most of all, Be Gentle With Yourself.  Beating yourself up won't help you feel better and it certainly won't help the fatigue.  

Definitions of Conditions Listed in my Medical Chart

Minimization of symptoms (Or "Yes, I realize I'm gritting my teeth, but it doesn't hurt that bad.")

A few weeks ago, I had my monthly acupuncture/cupping appointment. Acupuncture/cupping is a regular part of my treatment plan, but it's not always the most pleasant experience.

(Information on Acupuncture and Cupping therapies.)

Don't get me wrong; my acupuncturist is amazing and I always enjoy seeing him.  But the cupping treatments can be painful at times.

At this last appointment, he hit a particularly tender area, and asked me if it hurt.  I made some non-committal comment about it, minimizing the fact that it really had hurt, and realized I did that with a great deal of frequency.  I'm quick to say "Oh, it's just a tender spot" when it fact it hurts like hell. And I tried to figure out why, when I was in a place with someone who'd worked with me for years and helped me with my worst pain, I was trying to minimize it.

The fact is that many people with chronic pain/invisible illness minimize their symptoms, even to their medical team.  There could be a number of reasons for this from the lack of supportive response from society, family, friends, medical community, and others when we try to discuss our symptoms to not wanting to be seen as "complainers".  Unfortunately, it's this continual minimization that hurts our overall care with our medical team (they can't treat us appropriately if they really don't know what's going on with us) and it gives society the impression of "Oh, it's really not that serious."

Let's face it.  The average person who asks "How are you?" doesn't truly want to know the answer to that question.  (Many who ask that question don't even want an answer at all.)  Do I tell anyone who asks how I am, how I truly am?  Absolutely not.

But to the people close to me, I do them and myself a disservice if I don't speak up about how I'm truly feeling.  I strongly believe that one of the reasons I developed these conditions was to educate about them and advocate for all of us dealing with them.  I don't complain incessantly, but I am honest if I'm having a bad day.

With my medical care, I need to be as honest and direct with my medical team, otherwise they can't help me effectively.

There are a few things that can help with this:

• Apps (like the WebMD Pain Coach App) can help track pain and keep a record of it.  With these sorts of tools, I recommend discussing the results with your doctor.  These tools are always best used in conjunction with an approved plan for treatment that works for you and your medical team.  There are other apps out there that can also track other symptoms associated with these conditions.
• If you don't have a smart phone or tablet, grab a notebook and journal.  Start small, but you can jot down notes about your pain level, fatigue level, and possible triggers.  Using Apps or Journals can help you give your doctor an accurate description of your symptoms (and may help you identify triggers).
• With major emergencies--extreme pain, bleeding, or other items that require immediate attention--seek out emergency care immediately.  But if something comes up for you that's a question or comment that could impact your care or provide more information to your doc--that isn't emergent--leave them a message. Many medical systems now offer the ability for patients to email their doctor in a secure system for non-emergent questions.  (And since my memory isn't always the greatest, I can drop her a line while I'm thinking about it at 3 o'clock in the morning rather than risking forgetting it.)
• Before medical appointments, particularly appointments where you may have a lot of questions, write them down.  Brainstorm with your loved ones prior to the appointment.  There is no such thing as a stupid question when it comes to your care!  So, bring a list with you.

So...how are you doing today?

Definitions of conditions listed in my medical chart

Chronic Pain and the Pain Scale Fallacy (or Do Chronic Pain Warriors even use the first few digits on the scale?)

A common question that people face when interacting with medical professionals regarding medical issues is "what do you rate your pain?"  It's a scale from 0-10 where 0 equals no pain and 10 is extremely severe pain.  It resembles something like this:

Doctors, Nurses, Physicians Assistants, and Nurse Practitioners use this as a guide to gauge someone's pain, and it's based on patient self-report.  It's very obviously subjective--the patient has to quantify what they're experiencing into a number--but I get how it's a beneficial tool for medical professionals.  How else can they figure out how bad the pain is without a report from the person experiencing it?

The problem?  For many chronic pain warriors, we may not have experienced anything less than a "3" for years, and this starts to skew our scale.  And for many of us, we regularly exist in the "severe" range.

There is not a day that I do not experience some level of pain.  Some days, the quality of pain is more achy, as if I am experiencing the flu.  On others, it may hinder my ability to walk or breathe.  The unfortunate reality of the conditions is the unpredictable nature of it. While there are definitely things that can exacerbate the pain (i.e.-overexertion, certain foods, certain weather conditions, emotional stress, etc), sometimes there is no rhyme or reason to an increase in pain.  Lately, my "default" pain level has been a "6"--and that's on good days.

But I--like many chronic pain warriors--continue to smile and work through it, and this throws a lot of medical professionals off.  Recently, I had a visit with my primary care and I'd been dealing with a pretty rough case of sciatica pain.  When asked where I'd rate it on the pain scale, I calmly said "7".  I wasn't crying; I'd even cracked a few jokes (because I use humor to deal with a lot of things).  My doc knows me, though.  She knows I'm extremely skilled at hiding pain and fatigue (20+ years of practice), so her only response is "A 7?  That's pretty severe.  We need to get that under control.  I'm going to make a referral to the pain management program."  My doc's pretty awesome that way.

That's not the experience with all health care providers.  A lot of providers will actually assess a person's pain based on how they appear.  So, if you walk into an ED and you're smiling, playing games on your phone, and generally seem alright, providers may assess you as having low pain.  (And quite honestly, if you walk into an ER smiling and playing games on your phone, even I would have to ask why it couldn't wait until you could see your primary care the next morning.)  Conversely, if you enter the ED grimacing or doubled over, they're likely to assess you as being in some form of discomfort.

Admittedly, these are two pretty extreme examples, but in the Emergency Room, the staff are accustomed to making quick assessments to determine what the problems are.  It's a strong skill to be able to quickly eye a person and assess them, and move to start treatment. The challenge comes in when people are accustomed to wearing a mask over their pain. It hasn't be completely uncommon for me to enter the ER in extreme pain, but to show little outward reaction to it.  Or, for that matter, to be making some jokes.  

So, here's the difference between a "normal" (non-Chronic Pain Warrior) and Chronic Pain Warrior:

Or, at the very least, perhaps Chronic Pain Warriors need our own (expanded) scale:

One of the other issues with the pain scale is it doesn't address the differences in severity, quality, or location of pain.  For instance, I may have widespread pain that's achy, but using to the sciatica pain as an example, that was very sharp and acute nerve pain across my hips and down my back in addition to the overall achiness.  I was also dealing with a migraine, and my knee was acting up. There isn't enough space on the form I had to fill out prior to the appointment to write out all of that.  

The pain scale isn't a bad tool, but it doesn't provide an accurate representation for the pain that Chronic Pain Warriors experience, and this leads to even more frustrations in treatment for both the doctor and the patient.  

Definitions of the conditions listed in my medical chart

Systemic breakdown of the body (or, I wish my hair would stop falling out.)

Autoimmune conditions slowly take our bodies and break them down, and the evidence of this can be seen in a variety of ways.  Not only do we experience the fatigue, chronic pain, and other wonderful effects of autoimmune disease, there are impacts that many don't realize occur.

Eyesight

Lupus has a documented negative impact on the eyesight, but many people experience some loss of vision/blurry vision with Fibromyalgia.  

I had beyond perfect vision as a child and teenager.  But as I started college, I noticed a decline.  Initially, I blamed it on the professor that really liked to use overhead projectors. (For the younger generation, these were machines that projected an image of whatever the instructor put on the table, in the form of plastic sheets with writing or pictures called transparencies.)  This prof really liked her transparencies, and just imagine trying to read (and copy down) pages full of Times New Roman in a size 8 font, and you have an idea of the pain we experienced.  About halfway through the semester, I realized that I was having more difficulty reading the transparencies, and that I should probably see the eye doctor. (As it turns out, you can only scoot your desk so close to the screen before people start to notice something's up.)

So, I saw the eye doctor, and there had been a slight decline in my vision, but nothing major, and I started wearing glasses for driving and when I was in class.  (The problem was that since I was in class or driving all of the time, I pretty much always wore them.  I ended up switching to contact lenses a couple years later.)  And with every visit, my vision became just a little worse.  It was nothing to be extremely concerned about; my eye tests came back normal and my eyes were otherwise healthy.  

And then, about three years ago, I had a sharp decline in my vision.  Again, the other tests revealed no other problems, and so we had a bit of a medical mystery on our hands.  (Now, everyone realizes there were two factors at hand: Autoimmune disease and a medication I was on at the time.)  

Hearing

This is one I struggle with admitting is an issue.  There are certain tones that I'm losing the ability to hear.  It's been a pretty gradual decline, but it's definitely noticeable.  I can usually cover it pretty well by reading lips when people are talking or (when I can) minimizing other noise around me, but I've noticed a lot of people like to turn away when speaking, or cover their mouth when speaking, or speak softly on the phone.  I have frequently misheard things that were said (and in some pretty funny and creative ways), and it can definitely be challenging.  

On the other side, there are sounds that I can hear all too well, and cannot tolerate.  I don't do well with loud noises (it's just overwhelming for me) or certain high pitched noises.  For instance, my husband is a handyman, and uses a lot of battery operated tools.  When he charges those batteries, they emit a very high pitched annoying sound that makes me want to hide my head in the couch to avoid it.  It's one of those noises that simply grates on my nerves and almost causes physical pain.

Touch

Being touched can be painful.  Hugs and handshakes can be painful because many people don't realize how tight they're squeezing, causing pain to our already tender muscles and joints, but just touching the skin lightly can be painful and/or irritating.

There are days that my clothes hurt.  It's not that they're too tight--I make sure I buy clothes that fit well and comfortable made from lightweight fabrics that are soft on my skin--it's just that my skin is irritated by the slightest touch, slightest pressure, slightest movement upon it. In my household, we've taken to calling this "my tactile stuff" to differentiate it to the pain I experience from too my pressure, and it essentially means "don't touch me right now."  

Experiencing this can be extremely isolating.  

Smell

While other things have declined, my sense of smell has grown very acute.  This is likely related to the Multiple Chemical Sensitivity.  If the trash hasn't been taken out, I can definitely tell.  But, on the plus side, I can tell when fish is going bad before anyone else.


And finally, this isn't one of the five senses, but my hair is falling out...

I've gotten to the point in my life where vanity is a waste of time and energy, but I still like to look good when I can.  I grew up having extremely thick and beautiful hair.  It was so thick that hairdressers would have to thin it out some to get it to do anything.  And then, about 10 years ago, I started being able to pull handfuls of it out after I washed it.

Initially, I didn't think anything about it.  It's said that we lose 100 hairs a day, so I just figured it was part of that.  (No, it didn't dawn on my that that number was body wide.)  And then I noticed the bald spot forming on the front of my head.

So, I started getting my hair cut shorter.  I've learned if I keep it shorter, it takes the extra weight off of the hair, and I tend to lose less hair, but I'm still losing it.  Generally, it's only noticeable to me, my hairdresser, and the coworker who teased me that they could follow me around the building by a trail of my hair, but it's definitely something I'm a little sensitive about.  

I've recently stopped coloring my hair, and have been surprised to find out that the warm brown color that it was once has now become a dark, almost flat brown.  I realize this is the combination of the disease on my body as well as the medications I'm on, but it's still frustrating.  

With all of these, yes, they worsen when I'm experiencing a flare or in times of high stress.

So, what are some ways I've learned to cope?

• Regular eye exams.  It means I keep my prescription for my glasses and contacts up to date and ensures that my eyes are still healthy.  (This is especially important since I've recently started on a "Disease Modifying Medication" where my eyes could be negatively impacted.)
• For hearing, I try to avoid situations where there's a great deal of noise.  I've also become more open with telling people, "I need you to look at me when you speak" or "I'm sorry; can you repeat what you've said?"
• For touch, I'm fairly open and speak up when it's more of an issue to me.  And my husband understands that it's not personal; I'm just having a rough day.
• Regarding my hair, I've learned to work with hair dressers that "get it."  Many of them have worked with thinning hair, even if they're not familiar with the conditions that I'm dealing with.  Their job is to make me look and feel my best (and least, when it comes to my hair).
• And for all of it, it's important to manage stress.  Keep watching here for an upcoming blog on managing stress when you have an Autoimmune condition.  

Definitions of medical conditions listed in my medical chart

"Med Seeking Behavior" and chronic pain (Or how can I prove to you that my pain is real when I have an Invisible Illness?)

We were watching the show "Night Shift" the other evening, and there was a scene where a patient comes in with obvious pain.  It appears she had kidney stones (to which I can attest is extremely painful), and the inexperienced medical professional on her case diagnosed kidney stones based on the tests, including blood in her urine.  Turns out the patient was a frequent flier to the ER and nicked her finger so she could put blood in her urine, and her chart documented a long history of med seeking behavior, specifically trying to get narcotic pain medications.

Now, med seeking behavior is a major problem for the heath care system today.  I won't deny that. And while the "typical" drug seekers shown on the media and in television shows usually show addicts in a fairly dramatic fashion, the truth is that health care sees med seeking behavior in a variety of ways, including individuals complaining of pain caused by invisible illnesses. And those individuals may truly experience the levels of pain that they're reporting--or they may not.  But it does make it harder for those of us who are truly in pain and need certain medications for treatment to receive the treatment we need.

So while society tells us "But you don't look sick" and many don't believe us, health care can share the same opinion.  And I can't blame health care for being cynical.  Prescription drug abuse is on the rise, and the FDA has changed their rules about prescribing Hydrocodone as a way to partially address this issue.  There are reports on the Office of Inspector General website of doctors being arrested for inappropriately prescribing Schedule II drugs and fraudulently billing for them.  Add in the news of increases of death due to accidental overdose of prescription pain medications, and it's understandable that medical professionals are cautious.

But there's very much a flip side to the story.  Those changes have led chronic pain warriors who rely on those medications to function to have great difficulty in getting the meds.  The cynicism of health care professionals to those with invisible illnesses who rely on those medications has led to people not getting what they need for treatment.  And this isn't the entire health care profession--there are many out there who acknowledge that there is a proper place for narcotic pain medication and work with patients on appropriate pain management.  

I've had experiences that run the gamut in the 20+ years of living with chronic pain.  The first time I was ever given a Narcotic pain med, I was about 20 years old at the time, and I was in the ER with pleurisy.  For those who aren't familiar with the condition, it felt like an elephant that was sitting on my chest and trying to crack my ribs with every breath, every attempt at talking, or every attempt at moving just a little.  It was extremely painful.  (Funny story: to say that I'm somewhat sensitive to pain medication is an understatement.  Shortly after the administration of the drug, I had the sudden urge to sing Disney tunes.  I must have said this aloud, because the nurse turned to my mom, who was with me, and said "Perhaps she only needs half of the pill.")

My primary care at the time was fairly wiling to work with the Fibromyalgia and Myofascial Pain Complex, but he also was quick to prescribe the pain pill I tolerated so well with pleurisy as a PRN ("to take as needed") for me to deal with pain.  This wasn't something I had requested, but it was something that worked quickly to deal with severe pain and would allow me to get back in track in maintaining my health.  

Over the years, it became a staple in my care.  For doctors looking at my history, they saw how frequently the PRN pain meds would expire before I even needed them (which shows how often I utilized them), and I've always been pretty vocal that I prefer other ways of dealing with my pain spikes if I can.  I can honestly say I've never had one of my (many) primary care physicians treat me as if I were med-seeking.

I can't say the same for some of the specialists I've seen.  And I really can't say the same for trips to the ER.  I once had a very nice and sympathetic ER nurse tell me to be careful sharing that I was diagnosed with Fibromyalgia with ER staff, because many of them will view me as doing nothing but med seeking.  

I will admit; I did go to the ER med seeking once.  (Well, actually, it was a total of 5 times in a week.)  I had kidney stones.  At that point, I would have stood on my head and whistled "Dixie" if they could take away my pain.  (And, in normal circumstances, I can't do either.) Generally, though, if I'm at the ER for pain, it's because I'm concerned there is something really wrong going on in my body.

I have some recommendations regarding this:

• Develop a strong rapport with your primary care doctor, and be open to other forms of treatment besides Narcotics.  Some medical groups have acknowledged the vast problem of chronic pain, and have started pain management practices that focus on a variety of ways to help alleviate pain.
• Educate yourself.  Work on finding what works for you to control pain that may not include the pain meds.  There are reasons I don't like Narcotic pain meds. They don't completely take away the pain and leave me feeling fatigued and sluggish for a few days after (on top of my already present fatigue), but the digestive issues?  Don't get me started on those.  And frankly, overuse of them can lead to dependency on the medication and potentially damage to organs.  That's why I use it as a last resort.  Is there a place for them?  Absolutely.  Do I still have my PRN prescription in the medicine cabinet?  Absolutely.  Do I still opt for time in the pool and acupuncture before I reach for them, when I can?  Absolutely.  
• If you have to seek out emergency care for pain, be open and honest.  Despite the recommendation from that ER nurse, I don't hide my diagnoses.  And yes, I have been treated poorly in the ER at times.  (And then I've filed complaints and requested that the staff receive additional training on chronic pain and invisible illnesses.)  But if you hide something, it'll appear you're hiding something, and staff are going to jump to the worst conclusions.  
• And if you seek out emergency care for pain, and they determine that your pain would be better responsive to an injected anti-inflammatory rather than a narcotic, don't argue with them (unless you know you have a contraindication for the anti-inflammatory).  Arguing with them isn't going to help your case and WILL make you look like you're med seeking.  After all, the purpose here is to help manage your pain, not to get you higher than a kite while doing so.  

Definitions of conditions listed in my medical chart