Working with Medical Professionals (or You may have the M.D., doctor, but since it's my body, I'll make the final decisions.)

A doctor spends a lot of time in school, learning.  After they get through the classroom part, there's internship and residency, and depending on which specialty they choose, more time spent in residency and fellowship. There's a lot that goes into learning how to treat the various ailments and traumas that can happen to a human body and no one person can learn absolutely everything there is about medicine. 

This isn't to discount the amount of effort, time, and knowledge it takes to get those two letters behind one's name.  I have a huge amount of respect for those individuals who dedicate their lives to helping others, whether it's in medicine, social work, or a related profession.  But with any profession, there are always a few individuals who go into it for the wrong reasons (read: money).  And with medicine, there always seems to be a few docs out there who seem to suffer from "God Complexes" where they are unwilling to concede that they, in fact, may not know everything.  

When one is diagnosed with a chronic illness, it can become a full time job to coordinate doctor's appointments and medical procedures.  Fitting in a trip to the pharmacy before they close seems to happen more often than grabbing a quick cup of coffee with a friend.  

The receptionists at my primary doctor's office know me well.  They see me walk in the door and grab my paperwork without asking my name.  They ask about my husband and dog. They, like my close friends and family, have seen me "without my mask".  There's really no reason to pretend to be happy or healthy when you're going to the doctor's office.

My current primary care is awesome.  She respects my desire to try to treat my conditions as holistically as possible and understands that she is part of a medical team that I've chosen to help me, but that I make the final decisions on any sorts of medication and treatment.  I don't say that "I make the final decisions" to be a difficult patient; I say it because I have to live with the impact of those decisions.  

The average person--without any major illnesses--goes to the doctor when they get an acute illness like a cold or the flu, or maybe annually for a physically.  For an individual with chronic illness, there are frequent visits to the doctor's office (or doctors' offices, depending on the condition).  There may also be multiple medications for an individual to take.  And with those medications come side effects.  And some of these side effects aren't the most pleasant things to experience. 

I have been through multiple medications since my initial diagnosis of Fibromyalgia 22 years ago, and along with those medications, I've had to deal with side effects.  Some have been relatively minor, like dry mouth.  Others, such as the weight gain I mention in a previous post, haven't been so minor.  And still others, like the ulcer, have a potential to be very serious.

There are medications I prefer to not take unless it's absolutely necessary.  Like many people with chronic pain, I hold a "PRN" (or to take as needed) prescription for narcotic pain medications, but I avoid taking them unless I can't breathe, can't walk, or am in absolute screaming pain.  I think there's this idea that pain medication takes away pain, and in my experience, I still feel the pain.  I just don't care as much about it.  

But when I decide it's time to take a pain pill, I've committed myself to feeling rebound pain (and yes, that IS as fun as it's sounds), a pretty good headache, digestive challenges for the next couple of days, and just generally feeling like crud for a few days after taking it.

So, I've educated myself about the potential medications and treatment.  I ask lots of questions.  I've learned that while the internet can be a great tool with lots of information, WebMD can convince anyone they're dying.  I turn to peers on social media and online support groups for information and support.  I read journal articles.  

And while my primary care is awesome, amazing, and completely supportive of my participation in holistic therapies, I occasionally have to see specialists that aren't so awesome.

I've gone through multiple Rheumatologists.  For some reason, doctors in this specialty and I just don't seem to get along.  (They want to tell me what to do without questioning it and I like to question things.)  If I'm going to undergo a particular treatment, I need to know what the potential benefits/risks are to the treatment before I'll agree to it.  If it's adding an additional medication, I need to ensure that the new medication won't cause additional side effects that are highly problematic for me.  If it's a new medication, I also want to ensure that there aren't any contraindications with the medications I'm already taking.

I have had doctors tell me that all I needed was to "sleep and exercise more".  (At that point, if I could have done either, I wouldn't have had to see the new Rheumatologist.)  I have had doctors tell me that they didn't like treating people with Fibromyalgia.  (I was actually seeing this particular doctor for the recently added diagnoses of Lupus and RA).  And, as is my right as a patient, I fired both of those doctors from my medical team.

Here are some steps to be an active participant in your medical care:

• Educate Yourself.  Seek out information about your diagnosis and symptoms. Look up information about potential treatments for those diagnoses, and pay attention to the side effects in the fine print.  Find which doctors in your area/insurance plan are rated well, in terms of knowledge and patient care.  
• Ask Questions.  Ask questions of your doctor.  If they're not receptive to questions, they're likely not the appropriate doctor for you.  (And as a note, if you're seeing someone new or if you've received a new diagnosis, write any questions down prior to the appointment and bring your list with you.)
• Be clear about what outcomes you want.  Realistically, what you ultimately may want may not be attainable.  But what outcomes can you live with?  What's possible?  What can be done to get you from where you are closer to where you want to be?  
• Be clear about what side effects/outcomes are intolerable for you.  If increased fatigue is a problem for you, you likely don't want to be on a medication that will make you very tired.  If weight gain is a no-go, then you may want to avoid medications where weight gain is a side effect.
• Don't be afraid to request a change of provider.  Just like not all people get along with each other, not all doctors are meant to treat all patients.  Sometimes it's just a conflict of personality types, and it's within your rights to request a change of provider through your insurance carrier.  
• Don't be afraid to say no.  Ultimately, it's your body and therefore your decision on whether you move forward with certain treatment.  If you're not comfortable with it, it's your right to decline that particular treatment.

For more information, check out the Joint Commission on "Speaking Up".

Definitions of medical conditions listed in my chart.

Cognitive Challenges (or Where the hell did I put the phone?)

Those with Fibromyalgia are all too familiar with the term "FibroFog" or the term to describe the cognitive difficulties that accompany this diagnosis.  The Mayo Clinic describes the cognitive challenges as impairment in the ability to focus, pay attention, and concentrate on mental tasks.  The Arthritis Foundation expands on this definition adding that it can also include confusion, lapses in memory, word mix-ups, and difficulty concentrating.

My long term memory is exceptional.  I have the ability to recall regulation from California Code of Regulations almost word for word and criteria for psychological diagnoses from the DSM IV TR.  Put me in a meeting with a group of people, and I can remember the smallest details of historical changes of policy and legislation (related to mental health in California). Give me an hour with a client to complete a full Biopsychosoial assessment, and I can recall details about the client years later.  

I'm a voracious reader.  I can read lengthy novels in a day.  Reviewing hospital or client charts could be done very quickly--and I usually can remember the information I read.  

In high school, a friend got me started into competitive public speaking, and my ability to speak up in meetings and sound like I know what I'm talking about is actually quite impressive.  While I'll never say I adore public speaking, I do enjoy conducting trainings.  (I play a great extrovert when necessary.)  

But for all of these tasks, concentration, focus, and being able to utilize my vocabulary is necessary.  It's frustrating when it's difficult to focus on a task or recall information, including words.  Fortunately, when it comes to work-related items, I can usually push to focus and concentrate, and I've become a master at substituting words smoothly so that no one sees me struggle.  

In my "downtime", though?  Or when I'm with friends or family that I allow to see behind the mask? When it's work-related, I can push through, but the fatigue I experience later is great and the FibroFog can get pretty bad.  (It also increases during times when I'm experiencing high stress levels.)

I learned a long time ago that I could be frustrated with my FibroFog moments, or I could laugh at them (although, some of them weren't so funny at the time).  

Since I'm a big believer in laughing at oneself being good for oneself, I'm going to share some of my "FibroFog Funnies".

• When my husband and I first started living together, he got to experience one of my fog moments after a grocery shopping trip.  We put the groceries away, and later that evening, I heard a noise of frustration coming from him as he looked into the pantry for something. Apparently, while putting away the groceries, I put the ice cream in the pantry and the cereal in the freezer, and the ice cream had melted (and dripped) all over the place.  After that experience, we learned not to buy the ice cream containers that open on multiple sides.

• One day a few years ago, I heard the phone ringing, but it was muffled, and I couldn't find it anywhere.  I was finally able to locate it...in the freezer.  Apparently, I had set it down when I went in there to get ice and forgot about it.  Unfortunately, the person on the other end ended up getting the greeting of "Hello?  Sh** that's cold!"  (I'd like to say I've learned to keep the phones out of the freezer, but it's happened multiple times.)

• Our house cleaner found the remote in my sock drawer.  We're still not sure how that happened.

• There have been several instances of lost words where I've been trying to say something I'm usually familiar with, but end up describing the words I'm looking for (frequently using sign language of sorts).  This can get highly entertaining for the individuals around me as my arms start flying.

• I've attempted (on three occasions, now) to brush my teeth by putting deodorant on my toothbrush.  (What makes this even more impressive is that my deodorant is the stick kind.)

• I've come close to cleaning my contact lenses with body wash.

• This last one is a potentially serious one, but it highlights how serious this can be.  I've actually taken my medication twice in one evening because I forgot I'd taken it earlier. Fortunately, I only experienced feeling like complete and total crap the next day.  (Please note that medications and medication errors should be taken very seriously and to seek medical attention should be sought immediately if errors have been made.)

How do I avoid FibroFog Moments?

• Develop habits.  I have a routine in the morning of what order I complete tasks in.  For example, after my shower, I put my contact lenses in, brush my teeth, and put deodorant on.  I do it in that order, and I keep the supplies for each of those tasks in the same place at all times.  
• Be organized.  I keep my keys on the hook by the door, my purse on the shelf, and my phone on the charger by my bed.  If I deviate from returning those items to those places, it's a problem.  
• Keep it simple.  Clutter is chaos.  If it's not something that is necessary or beautiful, don't keep it around.  The more stuff you have around you, the easier it is to lose things, and the easier it is to feel overwhelmed and add stress.  (And stress is the last thing that will help FibroFog.)
• Be gentle with yourself.  FibroFog can be incredibly frustrating, but it can also be an opportunity for great laughter.  And trust me, laughter is infinitely better for overall health than getting upset. 

A Final Note:  During the writing of this blog, I asked my husband if he could remember any FibroFog moments.  He just shot me a look that read "You're asking me to remember things that you've forgotten?".  Oh.

Isn't Puberty Bad Enough? (or Getting Diagnosed with a Chronic Illness as a Teenager)

Looking back, I can never really think of a time when I wasn't experiencing some level of wide-spread pain or fatigue.  Even as a young child, I was sick.  A lot.  I came down with sinus infections every other month, it seemed, or respiratory issues that would quickly morph into pneumonia or bronchitis.  For many years I didn't even realize my pediatrician's office had a waiting room because I was always ushered through the door they used for emergency appointments.

But I became a pro at swallowing pills.  (Please note, this isn't something of which someone should be proud.)  Amoxicillin was frequently part of my daily ritual, along with other medications used to treat respiratory issues.  I became familiar with the route from the doctor's office to radiology and back, and knew exactly where the cafeteria was in the hospital.  I was a frequent visitor.  (In truth, all of this time spent around medical professionals inspired a love of medicine and health.  To this day, I love being on a major university hospital's campus...as long as I don't have to be the patient.)

As I grew older, my family and I became practiced at the rituals.  At the first sign of anything sinus or lung related, off to the doctor I'd go.  It hit a point where we could just call in that I was coming down with something, and the doctor's office would call in a prescription.  This was all during the time when doctors prescribed antibiotics for everything. (It was a few years after my diagnosis of Fibromyalgia that a doctor told us that there's a fairly good chance that it was the high utilization of antibiotics throughout my childhood that led to my development of autoimmune disease.)  

As I entered my teenage years, I started having lots of pain in my knees.  I can't really pinpoint feeling the achy pain that frequently is associated with Fibromyalgia, although I know I was experiencing that constantly (along with fever, so we continued to believe it was just an acute illness.)  The problem was that none of the doctors I saw could find anything "wrong" with me.  The blood tests were normal.  

Throughout this time, I became severely depressed.  I was experiencing the mood swings of puberty and hormonal changes along with not feeling well and dealing with constant pain.  A frequent refrain from the multiple doctors included the statement "We can't find anything physically wrong; here's a referral to a counselor."  And I saw the therapists.  (And incidentally, I was probably the kind of teenage client that most therapists hate to treat.) But while I wound up with a diagnosis of clinical depression, it still didn't help with the physical pain or fatigue that I was experiencing.

My mom deals with chronic pain and multiple chronic illnesses and has since I was a child, so she wasn't afraid to continue to be an advocate for me.  I'm grateful for that example because it 1) got me a diagnosis and we were able to start treatment and 2) taught me to advocate for myself and others.  When I was 15 we were finally referred to a Rheumatologist who ran more tests and came to the conclusion that I had Fibromyalgia Syndrome.  I remember the doctor telling us a bit about it--what was known about it 20+ years ago--and adding the statement "We've really only seen this in women in their 40's and 50's."

I was 15 years old.

At the time, there weren't a huge amount of treatment options known to help Fibro.  I was placed on a prescription of Naproxen Sodium (now known as "Aleve", but it wasn't available over the counter at that point.)  A few months later, I was having an Upper GI Series because it had given me an ulcer. (Sidenote:  Barium milkshake will never be a "flavor of the month" milkshake.)  Next on the lineup was one of the older anti-depressants that they still occasionally use for treatment, and it was successful...for a while.  (I'm still trying to lose the 60 lbs I gained while on that medication.)

But in the midst of the doctors appointments and physical therapy and knee braces and medications, I was still a teenager trying to get through high school.  Finding the energy to do all of the normal teenage things like go to a dance or the football game or spend hours on the phone with friends took a toll on me.  I wanted to be a "normal" teen, because really, who doesn't?  Being different during adolescence is not something most people strive for. But I had joints and muscles that ached and wouldn't cooperate when trying to be active.  I had to deal with the side effects of the medications and missing school because of appointments.  I found myself really struggling at times to follow the teacher in class or to contribute to a conversation (due to the cognitive challenges that can be a frequent part of Fibro).  

Don't get me wrong; I've always been a fighter, and I wasn't going to let some chronic pain condition keep me from doing well in school or be competitive in public speaking or win medals in Science Olympiad.  But as I watched my group of friends around me (who were just freakin' brilliant), I felt like I had to push that much harder.  For the group of friends I was in, the peer pressure wasn't to party or do drugs; it was to read Gabriel Garcia Marquez and have hours-long conversations.  Even with my high grades, I felt like the dumb one of the group.  

The thing is, life doesn't stop when someone receives a diagnosis of chronic illness.  Yes, I suddenly found myself a "Fibromite", but I was still a teenager dealing with the social requirements of peer pressure and preparing for a good college.  I still had to deal with getting acne and first kisses and boyfriends.  And while starting treatment for the Fibro helped with the depression, it didn't make the depression disappear.  

I think high school was the first time that I learned how to wear the mask of a normal.  I could pretend that I wasn't in pain, that I wasn't exhausted, that I was struggling.  I learned how to cover up my FibroFog moments when I would lose words that I wanted to say.  I learned that focusing on other people and other things could be a great distraction.  (It would be a few years until I learned that there were times I had to focus on myself for my health or I would pay dearly for it.)  And behind the scenes, where only my family and I could see, could I let the mask down.  

At the time of diagnosis, I don't think I really understood what "lifelong" meant.  At 15, even 35 years old seems old, so the idea that I would be dealing with pain and fatigue for a really, really, really long time didn't really hit me until I was older.  But since I also don't remember a time without the pain and fatigue, it's something that's familiar to me. 

I have a vivid memory from that time, though.  I remember meeting a woman who was probably in her 40's who was using a wheelchair.  She and my mom were talking, and the topic of Fibromyalgia came up, and this woman shared with us that she too was a Fibromite. Her pain had become so severe that she had to use a wheelchair to get around.  I vowed to myself that I would do everything I could to make sure I never ended up in a wheelchair due to my Fibromyalgia.  Years later, I realize that there's no guarantees, and there are certainly worse things than being in a chair, but that moment was symbolic to me and it solidifies my attitude toward my pain to this day:  

• Movement and exercise (in moderation) is a good thing for chronic pain.  Yes, it hurts like hell in the beginning, but it helps immensely.
• Holistic treatments such as acupuncture, massage, yoga, and meditation are lifesavers--use them first, before the NSAIDS or even pain pills.
• Attitude really is everything.

For parents who have a child diagnosed, here are a few tips from someone who's been that kid:

• Don't be afraid to advocate for your child with the medical profession.  You're entitled to second opinions.  
• Educate yourself.  Organizations such as the National Fibromyalgia Association, the Arthritis Foundation , and the National Fibromyalgia and Chronic Pain Association are great resources.  If you or your child is struggling psychologically, check out the National Alliance on Mental Illness.
• Talk to your child's school and, if necessary, educate them.  It's within your rights to request any accommodations that will assist your child with learning.
• Counseling is a good thing for both you and your child.  Caregiver fatigue and burnout is a real thing, and you need support as well.  
• Laughter really is some of the best medicine out there.  Try not to focus on the negative or on the disease all of the time, but make sure you encourage your child to be a kid.
• And it's okay to ask for help.  Create a support network around you for support and venting, maybe even people who can give you a chance to take a break to care for yourself.  

Definitions of conditions listed in my medical chart

Reality vs. Public Perception (or Yes, I know I don't look sick...but I am.)

Let me paint a picture for you.

Imagine a young woman, in her mid-thirties.  Her 5 page resume is sitting on your desk in front of you, and so you can see that she's an expert in California Mental Health regulations and Compliance. She also had a private therapy practice where she sees a few clients to maintain her clinical skills.  In one of her previous positions, she was the sole clinical person for several oversight roles, and she rocked it.  In talking with her, you also find out that she has a photography business on the side and has a greeting card line associated with it.  

In her free time, she's working on a third masters degree. She has a Master of Social Work, is a licensed clinical social worker, and finished up a Master of Public Administration a couple of years ago--while working full time.  She supervises individuals for their hours toward licensure, because she feels it's important to give back to the future LCSWs of California.  For fun, she and her husband love to go on hikes with their amazing dog.  She enjoys knitting, lampworking (making things out of glass), and writing.

She's sitting across from you, very poised.  She's quick with a smile and very well-spoken.  Her humor is quick and dry, and you imagine she falls into the leadership position whenever she's working in a group with her confidence.  You can imagine that she's a great trainer as she explains her past job roles to you.  And you find yourself laughing as she relates a story about getting caught jamming out to a song on the drive over.  

Imagine that same young woman.  It's first thing in the morning, any day of the week, and you see her struggling to wake up.  Her body feels stiff and she's having some difficulty moving.  You see her take a deep breath before placing her feet on the ground, a wince showing her discomfort as she stands.  She limps to the bathroom for a morning shower.  She is pale and obviously in pain.  It doesn't take much to wear her out and the fatigue is obvious.  You watch her take a handful of pills in the morning after struggling against nausea to eat a little bit of breakfast.  This morning, her hands seem to have a difficult time holding the mug and she seems to have some challenges holding a conversation with her husband.

These are not two different women.  These are the same women.

The first is her public persona; the second is when she lets the mask down.

She's a chronic pain warrior.  

What you don't see is that she is always in some level of pain, dealing with some level of fatigue, and probably dealing with a number of other systemic issues while trying to live life.

How do I know?

I'm her.



Definitions of the conditions listed in my medical chart