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

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

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

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

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

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

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

Well, by most, anyway.

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

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

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

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

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

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

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

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

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

A list of definitions in my medical chart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Definitions of medical conditions listed in my medical chart

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

What can set a flare in motion? (Or why I HATE Daylight Savings Time.)

Flares are times at which the symptoms of Autoimmune Disease/Chronic Pain conditions are at their most acute and severe.  Flares can be short term (few days) or can last long term. They can happen for unpredictable reasons, but a Chronic Pain Warrior learns that are certain things that can set flares in motion for them (and it can differ from person to person.)

For me, there are things that I know can start a flare.  Stress, emotional overexertion, physical overexertion, changes to my sleep habits, medication changes, allergies, if I'm fighting off an illness (or sick with an illness such as a cold or the flu), or a multitude of other factors.  There are many that I've learned to avoid or to mitigate their impact, but there is one change in my environment that seems to get me every time.

Time changes.  Daylight savings time changes are probably my least two favorite days of the year, consistently, because I'll feel the impact of those changes for at least a week. Unfortunately, I can't avoid the flare, but I've learned a few tricks to mitigate it:

• Avoid trigger foods like sugar, caffeine, and alcohol.  I tend to avoid those foods anyway, but I seem to crave sugar and caffeine when I'm flaring.  (They provide quick energy, but I pay for it later.)  
• Try to drink plenty of water and stay hydrated.
• Eat regular meals.  (Don't skip meals! This can cause even more problems.  As a tip, many grocery stores are now offering prepackaged meals that are easy to throw in the microwave or oven and don't require too much thought, planning, or work.  Keeping a few of these around while flaring can allow you to focus on recovery while still getting a nutritional meal.)
• Rest when needed.  (Sleeping too much can also be a problem because it'll throw off sleep schedules, but allow yourself to rest.)
• Don't over-schedule/over-commit yourself.  Take a step back and focus on your self-care.
• Are there adjunctive therapies that help you?  For me, those include the use of Essential Oils, massage, acupuncture/cupping, and meditation.
• Gentle yoga (keyword gentle) and stretching can be helpful.  
• Do you have an activity that you enjoy that doesn't require a lot of output? Maybe it's reading a good novel, watching a funny movie, or sitting outside enjoying the sunshine. Spend time doing something that you find enjoyable and relaxing.

Personal Note:  I've found great Essential Oils through a company called Ravenscroft Escentials (link here).  Ginger and Charlie are amazing, extremely knowledgeable and helpful, and their "Fibro Rub" oil has helped me immensely.  

Definitions of medical conditions listed in my medical chart

Getting the Lupus/RA Diagnosis (or I KNEW something else was going on!)

About a year ago, I received the diagnoses of Lupus and Rheumatoid Arthritis.  It took awhile to get there, though.

I know I've mentioned in previous blog posts that my blood work didn't show anything wrong, but that's not entirely accurate.  At the time of my Fibromyalgia diagnosis, there was nothing of note in my blood work, but there have been some funky issues in my blood work over the recent years.  But there were no major red flags until my medical team started doing investigative work into my history and started ordering the "non-standard" blood tests.  So, again, I found myself going from doctor to doctor, having so much blood taken I started to joke that they should just put a port in, over the course of about 2 years.  

The appointment where I finally received the diagnoses?  It took ten minutes with a new Rheumatologist who looked at my file and said "I'm adding the diagnosis of 'Unspecified Autoimmune Disease' to your file, but you have Lupus and RA.  And you have to start on this medication today."

On one hand, I didn't want more diagnoses.  I certainly didn't want additional medications. But on the other, I was right.  Even though the symptoms for Fibromyalgia, Lupus, and RA are similar experiences in the body, I knew there was something that was dangerous in my body.  Fibromyalgia makes life miserable as hell, but it doesn't cause damage to organs and joints.  Lupus and RA do. 

Lupus is a condition that can affect almost any part of the body, especially the skin, blood, joints, kidneys, heart, and brain.  Without proper treatment and management, Lupus can be fatal.  Rheumatoid Arthritis is a progressive autoimmune condition that mainly affects the joints, but also muscle weakness and swelling.  The damage to the joints can be debilitating. Disease modifying drugs, such as Plaquenil, can be a great first line defense for these conditions, but other common treatments include chemotherapy drugs.  

I don't share this information because I want pity or people to feel sorry for me.  I strongly believe that everyone has their own challenges to overcome, and these just happen to be mine.  I believe that I've been dealt these cards because I am strong enough to handle it and the natural advocate in me can advocate for individuals with invisible illness and can educate about invisible illness.  This will be a lifelong battle for me.   

Definitions of medical conditions listed in my medical chart

Chemical Sensitivity (Or what do you do when your shampoo makes you break out in hives?)

About four years ago, I began having allergic reactions to my shampoo.  And shortly thereafter, I noticed that I was breaking out in rashes with my face cleanser and make-up. Then there was the allergic reaction to my deodorant (which was highly uncomfortable), and I noticed that I seemed to have increased sensitivity to my body wash.  Even my clothes seemed to cause a sort of allergic reaction.  I'd used the same brand of products for about 15 years, and the brand reported themselves to be natural with ingredients that shouldn't cause these sorts of problems.

But sure enough, I was experiencing sensitivity to something within the products I had been using for years and found myself standing in the aisles of Target wondering what would work for me.  Well, I found myself wondering what would work, but also worried of what else may cause these reactions. (I'm glad to say that I was eventually successful in finding new skincare, shampoo, body wash, make-up, deodorant, laundry detergent, and cleaning products, but I'm also very aware that this could change at any time.)

I, like many other individuals dealing with an Autoimmune Condition, have developed Multiple Chemical Sensitivity (MCS).  WebMD has a great technical description of this condition, but here's a definition from my point of view:  Intolerance to a variety of chemicals that can lead to allergic reactions within the body.

I won't bore you with the list of chemicals I cannot tolerate, but fragrance can be a major trigger for someone with MCS.  Strong perfumes or colognes are problematic items for me, because it can actually trigger breathing difficulties and severe nausea.  I once had to share a computer wrist rest of someone who wore strong colognes, and found myself breaking out in hives on my wrist.  I can't walk down the detergent aisle at the store because of the strong perfumes.  I can't wear clothes that have been bleached, nor can I be around areas where bleach has been used for cleaning purposes.  

Like Fibromyalgia and Lupus (or other Autoimmune Conditions), there isn't a definitive list of what chemicals to which a person with MCS will react to, nor is there a list of potential reactions, so what I may have sensitivities to others with MCS may not (or vice versa).  

It's easier to control the environmental factors within the home.  For instance, in our household, we've found a line of house cleaning products that both work well and don't lead me to have a negative reaction.  We're very clear with the individual who cleans our house for us that it's necessary for her to use those cleaners, as well as why.  

In our home life, we have run into some challenges with MCS. My husband and I are both artists and many creative endeavors require chemicals that aren't so great.  I refuse to give up those creative outlets, and so I've had to figure out workarounds where I can.  The big challenges come while being out in the world.  

Ever have the experience of stepping into an elevator with someone who's wearing very strong perfume?  For a "normal" person, it's an uncomfortable experience, but for someone with MCS, it can feel like being choked.  So you can imagine being stuck on a plane or working in an office where strong fragrances exist.  

So, if you're sensitive to chemicals, what are some ways to deal?

• If you're working outside of the home, advocate for a fragrance-free workplace. You might be surprised how many of your coworkers will thank you for it. Chemical Sensitivity is also recognized as as a disability by the Americans with Disabilities Act.  (Learn your rights under the ADA.)
• Read labels.  Learn about what products you're using on and in your body.  Learn about the products you use to clean your home.  Not all "natural" products are natural (labeling can be misleading), so do some research.
• Remember if you have an Autoimmune Condition, you're more likely to develop additional Autoimmune Conditions and/or Chemical Sensitivity.  Talk to you medical team and other trusted professionals on how best to address these issues for you.

Definitions of medical conditions listed in my medical chart

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