Contraindications (Or My Meds Cause What Side Effects?)

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

Or longer, somewhat healthier lives.

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

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

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

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

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

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

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

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

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

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

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

So how do I handle the issue?

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

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

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

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

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

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

"Get Well Soon."

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


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

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

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

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


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

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

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

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

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


"I Know How You Feel."

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


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

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


"Other People Have it Worse than You."

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

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


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

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


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

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

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

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

I want to emphasize that I chose those changes.

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

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

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

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

What other things have these conditions cost me?

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

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

A link to the definitions listed in my medical chart

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

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

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

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

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

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

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

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

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

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

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

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

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

And no, I'm not a hypochondriac.

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

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

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

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

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

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

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

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

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

Definitions of Medical Conditions Listed in My Medical Chart

ADHD and Fibromyalgia (Or...Squirrel!)

Okay, so I have something to admit.

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

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

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

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

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

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

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

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

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

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

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

Definitions of Medical Conditions Listed in My Medical Chart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Definitions of medical conditions listed in my medical chart

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