"You look great, how can you be sick or in pain?"

Perhaps the most challenging aspects of having a disease (or more than one, as in my case) that causes chronic pain is that often we appear to be fine because our symptoms and pain are not on the outside. This presents a opportunity to educate others, assuming you are in the mood and have the energy to explain your disease or syndrome to someone. I have tried this approach quite a bit, trying to seize the opportunity to advocate for those of us who have Interstitial Cystitis (IC) and Pelvic Floor Dysfunction (PFD). I have found that many people I interact with at work or socially may be quite comfortable saying "you don't look sick" or asking "if you have a disease why don't you look like it?" yet they are not too excited to learn about IC, the details of a damaged bladder and what a bladder flare entails. Nor are they thrilled to listen to a description of how PFD is like a "migraine in the pelvis" and can effect not just the pelvic floor but also the vagina, vulva and perineum! With coworkers it can really be too much to explain that we IC and PFD patients also are subject to "accidents" of both bladder and/or bowel function and often there is no warning period before such problems occur spontaneously.

For me, as a high school teacher, you can imagine how horrid it is to have such an accident while teaching a room of 32 teenagers, yet not be able to run out to the restroom because it is actually illegal to leave a room of under-18-year-olds unattended! There isn't anyone to take over for a teacher that needs to go to the restroom under normal circumstances, much less in an emergency. Teaching these days is very much like prison, where you are only allowed to go to the bathroom, eat, drink or contact other adults at VERY SPECIFIC, predetermined times during your workday. Like Pavalov's dogs, secondary teachers will hear the bell ring and have to pee, or become hungry at the exact time each day, 20 minutes before "lunch" starts! God help you if you have a craving, need caffeine or just wanna use the bathroom leisurely for once; the schedule for teaching will not permit such luxuries!

I have fantasized about how much easier living with chronic pain would be if people at work, at social events and hell, even in the grocery store could tell when I am disabled or impaired by pain. I used to wish I could "demonstrate" the intensity of my pain...like a level 5 (about the level where I can't really get through the whole day, teaching 160 teenagers.....) I would have my eyes fill half way up with blood, so I could see above it, yet everyone else would be kinda shocked. Then at level 6, I would keep the eyes, then add a "visual expression of ache" which could be my face and neck beginning to show major strain, like when someone is sprinting to finish a race, the last few yards. At a level 7 my eyes would be 3/4 filled with blood, and it would leak out a little in tears tinged red, my face and neck would strain slightly more and the tips of my fingers and toes would begin to leak blood, as well as the capillaries in my ears (I usually wear my hair up so this "blood sweating" effect would show.... You get the idea. Nothing deadly, just kinda gruesome or scary like being in pain really is... I don't think I want to describe the visuals for showing pain levels of 8-10, however this picture might do it:

 Note: I would like to give credit to whomever created this, however I got it on Pinterest, so I don't have the name of the person who owns this! If you see it, please let me know your name and website link!

My other idea was to actively express my pain when I am experiencing it, however this would most likely lead to a 911 call by someone at Trader Joe's or any store I may be visiting, to report a "lady that is exhibiting signs of extreme mental illness, possibly under the influence of illegal substances and/or may be possessed by a demon or demon-like force" that needs immediate intervention by E.M.T.'s, the S.W.A.T. team and if possible an experienced exorcist-type professional.

The last thing I would like to address is this "Pain Scale" concept. When those of us with a chronic pain condition go to the doctor, which is typically a specialist in our particular type of disease, they use a scale of 0-10 for us to "rate" our current level of pain. The same scale is also used if we call the hospital emergency call center or actually go to the emergency room. Why you ask? Because in the world of science, which includes the medical world, professionals want to measure the degree to which the symptom is happening. With pain, the scale allows the patient to quantify their pain, with 0 equal to the "complete absence of pain" and 10 equal to "the worst pain you have ever experienced or worse than that pain level." Is this accurate or precise? Not necessarily. Everyone experiences pain differently and since pain cannot be directly measured it must be inferred by comparing it to a previous painful incident.

 For women with children, the "worst pain ever experienced" is typically considered to be the pain of childbirth. When I was pregnant with my first child and the contractions were between 90 seconds and 2 minutes apart I headed straight to the hospital. The nurse checked me, determining that I was dilated to "less than 1 centimeter" and sent me home, telling me to return to the labor and delivery floor in 2 DAYS! I am a very literal and analytical person, so I took her at her word. I left the hospital and went to dinner, consuming the largest vegetarian taco salad I could find, complete with mass amounts of cruciferous vegetables, beans, cheese, jalapenos and salsa. I was soon very full (I hadn't eaten all day to avoid any issues with my bowels during delivery of my baby) and waddled home to rest. Within a few hours, I was feeling very yucky, most likely due to what I had chosen as my first meal of the day at around 7pm in the evening. I was in bed, hoping to fall asleep and feel better in the morning. Instead, at around 11pm I started to feel very hot and began sweating profusely. Then I was running to the toilet, feeling like I was about to lose my guts...oh no, I think this may be...FOOD POISONING! Yes, it was almost exactly 4 hours after eating and it was quite possible that a lazy food prep worker had chopped my diverse vegetable selection on the same cutting board as raw chicken. So I sat on my toilet and cried while all food I had eaten left my body, not by throwing up but from the "other end" of the human. By this time, I am afraid that if it is not food poisoning that I must have the flu! My body is achy, particularly my lower back, so I jump in the shower and let the hot water pound my lower back muscles for relief. I could have stayed in their forever, except I am so HOT I have to get out and lie naked on the tile floor to cool down! After a many rounds of shower, then tile floor, then back in the shower my husband realizes that something is definitely not right and calls the hospital, it is now almost 2am. The on-duty doctor tells him to "bring me back to labor and delivery" so they can check my vital signs and the baby's heart beat. I am loaded into the back of the SUV, soaking wet, naked, wrapped up in my bathrobe with no slippers and rushed back to the hospital. The security guard lets us in the front doors (the hospital is closed of course), sits me in a wheel chair and rolls me into the elevator while my husband parks the car. The elevator doors open on the labor and delivery floor, and I tell the nurse that I seem to "have the flu, complete with severe aches and a very high temperature." She transitions me to the bed and proceeds to check me again, announcing that I am now dilated to 10! I argue, since it has not been "2 DAYS" like she told me and inform her that I need to have the epidural right now! She laughs, explaining that it is "way too late for that" and that as soon as the doctor gets there it is "time to push."  From the moment I got in the elevator it was exactly 19 minutes and my first baby was born! Yes, one set of pushing and that was it! 

Why share this story from over 18 years ago? Because I had no idea I was in labor, no idea I was experiencing "back labor" when I was at home, and would have never gone to the hospital at all if my husband hadn't decided to take me back to be evaluated. During labor and delivery, I discovered that  I was not experiencing the "worst pain in my life." I was 30 years old and my monthly menstrual cramping was the worst pain I had ever felt and labor was paling in comparison! I would find out much later that I suffered from severe cramping and pelvic pain  before and during each period for years, due to Endometriosis. Doctors were shocked that I got pregnant that first time, not to mention 3.5 years later with my second child. My pelvic pain condition became more severe in the years to come, resulting in several different treatments, surgery in 2007 to remove the Endo and again in 2010 to remove the Endo as well as my uterus and cervix. During the 2010 surgery my specialist, Dr. Lashay of Kaiser, Redwood City, CA confirmed her belief that I also suffered from IC and PFD, officially diagnosing me with both. My medical history indicates I have had IC since I was a teenager, and that PFD is most likely a result of enduring severe pelvic pain for so many years. Even without a uterus, I still have pelvic pain due to the neural pathways created from having severe pelvic pain over such a long period of time. I picture those neural pathways like deep ruts in a dirt road after the raining season is over. It was Dr. Lashay, whom I literally see in my mind as an angel that saved me and changed my life, who referred me to the Pain Management and Rehabilitation Program at Kaiser Permanente in Sunnyvale, Ca. I will write more about this program in future posts, it has changed my pain and my entire life in the months since I began in February 2013.