I was born on Christmas Day, which makes me a Capricorn. Honestly, I don't know much about horoscopes or astrology, particularly in regards to the signs other than Capricorn. I know a little about my sign, and when reading the description of Capricorns, it would be appropriate to show my picture next to it. Since Capricorn is "The Goat" it would be good to add some horns to my photo, since the not-so-lovable traits include needing control of everything, wanting to do things their way (since it is the right way 99% of the time) and being overly competitive and stubborn. Yes, I can wear a headband with horns on it if will make someone happy...God knows I have had plenty of laughs at the expense of others, it's their turn! Whether you see it as good, bad or neutral; us Caps are all about goals. I am a goal setter in all areas of my life, even when doing things to relax, there must be a goal to reach. For example, I am doing a mindfulness guided meditation, my goal is to do it for a certain amount of time. Another goal may be to have my blood pressure reading after I meditate by below 120 over 80. Yes, this is how my brain works, even if I never say it out loud or write it down in my journal (my goal is to journal a minimum of 3 days a week, preferably everyday). I have goals with housework, cooking, listening to others, asking good questions, exercising, training for events, amount of time with my feet elevated per day and even goals that relate to my dreams at night. I honestly expect to have a least one dream a night that I am aware of and it should be positive. If I am going to have bad dreams, my goal is at least one good one to balance things out.
So what happens now that I have three chronic pain syndromes? At first, nothing changed. I set my goals and powered through my pain, feeling strong and accomplished. Sometimes this worked, eventually the pain would be too much to power through. Note, I am not saying that the relationship between pushing for my goals and pain is a cause and effect relationship. No, it is not predictable by any means. Chronic pain is random. I repeat, NOT predictable. This means that I am not in control of why I have pain. Yes, I could have lifted weights and swam 2 miles in under an hour, then gotten very little sleep and sure enough I woke up in pain. I cannot then say that weight lifting and swimming cause my pain. Or lack of sleep was the cause of my pain flare. It is possible that "overdoing it" caused a pain flare, but that description includes more than just the exercise, it could be many things that are not even physical. For example, I may have agreed to join the PTA at school, go to lunch with a friend tomorrow and drive my son to his friends house after school and pick him up in 2 hours. None of that in it's own right is tiring, yet making that many commitments can have me lying flat on the floor, unable to move. So how do I balance life so that I can cope with my chronic pain in the best way? One word, AWARENESS.
Awareness can be of our bodies, it can be of our heart rate, it can be awareness of our emotions. The key to what we do and how are chronic pain conditions respond is to be maximally tuned into what is the best thing, at this moment, for ourselves. For me, this is where I am learning daily to follow my intuition, the voice in me that can select what is best for me. I let go of the over analyzing, of searching for the "why" and making sure my choices align with those ever-present goals. For my body, I choose to do a "Body Scan" by sitting or lying still, taking a few deep breathes and scanning from head to toe with my awareness. What I need to choose for my body will be apparent in just a few short moments. For my emotions, I do a similar scan, allowing my mind to become quiet an tuning into how I am feeling, what emotions pop to the surface. With emotions it is important to recognize they can be fleeting and you experience them briefly. While sometimes you may feel stuck in the emotion. When stuck, continue to breathe deeply and feel the emotion completely. By acknowledging and feeling your emotions you become free to let them come and go. As humans are emotions are flowing, never really stagnant. We get stuck when we try to avoid feeling the emotion and stuffing it away. I am fully aware you may read this and feel it is a simplified way to help your chronic pain, and you are right. Simple is all that is needed, combined with a constant flow. When we are blocked or stuck, our pain will feel stronger, more dominating. When we allow a flow through us, of emotions and sensations we learn that there is constant change in us, even in our pain.
We are our own group, humans that live with chronic pain. Some of us have a disease, with an official diagnosis and others have a "syndrome" or a "condition" that can be diagnosed or at least defined by our medical history and symptoms. Another group of us have symptoms and medical history, yet no diagnosis at all. Then there are those of us who have multiple diseases, syndromes and conditions that have overlapping symptoms that cause us chronic pain.The unifying issue is that chronic pain is not something that is being "cured" at this time in medicine. Since it isn't "curable" it can be extremely difficult for friends, family, co-workers and the general public to understand. This leads me to the statements often made by others in response to those of us living with chronic pain when we respond to "How are you?" with anything other than "Fine"
"Great"
-or any response from us that is easy to just move on from in continued conversation.
So we answer truthfully, even just a little bit with "Not great"
"My ______ is really hurting"
-or any other response that lets them know that we are not at our best and we still have a disease, syndrome or condition that causes us pain.
HERE IT COMES! Wait for it.........
"But you don't look sick?!"
"You don't look like you're in pain...."
"You always ________" (fill in the blank with your "favorite" negative statement)
"How come you don't get better?"
"You are always complaining"
"You are sick all the time!"
and
- "________________________" insert the last CLUELESS thing someone said in response to you!
YES, this is extremely frustrating, and can often cause me to cry on the spot! Crying doesn't help the situation and often makes it worse because some people actually think I can "cry on command" to generate more sympathy! I don't know where people get the idea that ANYONE would be that manipulative and spend so much energy to make everyone only "think" they are in pain all the time. Perhaps the individuals who think that people who have chronic pain are "faking it" have known someone in the past who was very manipulative? Maybe one of their parents or a friend of the family? I can see that if one had experience with an alcoholic parent or an aunt with an drug addiction then attention seeking, manipulative behaviors may have influenced how they view others that have a chronic condition. Can that really account for all of the clueless statements we hear from the people in our lives? I don't think so.
Another possibility I have considered is a basic emotion, FEAR. Do most humans believe that if you get sick you can be cured by modern medicine? The cure will not be too complicated, take a pill to get better is popular. At the worst, undergo chemotherapy or radiation or surgery or all three to be cured. So what happens when your loved ones and your coworkers find out that you cannot be cured? You may take pills, but they don't cure you. You may have surgery (I have had 2 surgeries so far) and still not be cured. I have friends that have had over 30 surgeries and still have multiple chronic pain conditions they cope with daily. I believe it is too scary for others to find out that you can get "sick" and not be curable. They know we are not "contagious" but somehow knowing that chronic pain can happen and it's cause may not be curable. The human brain loves to categorize and build connections between information, it is a basic way our memory works. Imagine the "list" of illnesses in your brain, and connected to that list are the "cures" or "treatments" to solve the problem of having an illness.
EXAMPLE LIST
Chicken Pox- Avoid completely with vaccine
Bacterial Infection- Go to doctor, get prescribed antibiotics
Flu Virus- Get the vaccine, hopefully avoid the flu. If you still get the flu, go to the doctor
for an anti-viral medication, rest and drink fluids, recover it 10-14 days.
Rotator Cuff Tear- Rest, anti-inflammatory prescription, physical therapy.
If not healed, schedule surgery to "fix" the problem.
Then one day, you wake up and KNOW you have a Flu Virus again! You do the same thing you did last time, and after 3 weeks you are still achy, exhausted and nauseous. The doctor examines you, does blood work, gives you another anti-viral medication and nothing helps. Your symptoms wax and wane, yet never get better. After seeing several other doctors and specialists, you are "diagnosed" with Chronic Fatigue Syndrome (CFS) based on being exhausted for more than 6 months and having a minimum of 4 out of 8 primary symptoms of CFS. You ask your doctor, how do you treat CFS so I can get better and be "myself" again? The doctor explains that you can try antidepressants, sleep aids, therapy, exercise, and a handful of alternative treatments that can help you feel better. However there isn't a cure for CFS that will make it go away for good. BOOM, your life is forever changed!
WAIT A SECOND! This doesn't fit with the LIST example! A person's mind wants to reject that this syndrome can't exist! If you can't list it as an illness, then list it's cure next to it, we don't want it to be real. Humans would rather assume that anyone with CFS must be faking it or that they "just want attention" when they are still exhausted after having been diagnosed for months, maybe even years. If a person has never had a chronic illness it is very challenging for them to be open to understanding what it is like physically and particularly emotionally to live.There isn't a magic pill to take it away. If there is no cure, the person realizes that they have to CHANGE and do things DIFFERENTLY from that point on in their life, THAT IS THE SCARIEST PART for humans. Change is scary, and when it is your only option, it is the scariest! I think that fear is what makes people not listen when we say we "are not that great today" after they have asked us the predictable "How are you?" They just move on to the next question, change the subject or say something clueless,
"You don't look sick?" or "You don't look like your in pain!"
Next post....What would we rather hear in response from our family an our friends? (I don't think we can expect much from the general public, but let us help our dearest humans learn how to respond with acceptance, love and kindness to our condition(s).
Last Sunday was traditional, a Father's Day Barbeque to be exact. Although my husband and brother-in-law handled the main meal, I was in charge of dessert and chose to make Peach Cobbler.
My recipe has been in my family basically forever, and since almost all of the generations before me were farmers, only fresh picked peaches will work!
The picture is my Grandpa Huth, my younger brother Jason and me on the tail end. We are heading out to irrigate the cotton on the ranch in Visalia, California. We were visiting from Hawaii, where we lived at this time, probably around 1970.
Since we don't have a farm here in San Jose for me to grow fruit, my husband braved the farmers market Sunday morning, bringing home the freshest, most perfect white peaches to fill the role. This recipe is simple and easy to adapt to meet specific dietary requirements. However it is dessert, so it is indulgent. If you do not have "room" in your daily caloric intake for desserts with added sugar, I recommend you have your peaches in their amazing natural state and savor the miracle of naked summer fruit.
Peach Cobbler Recipe- for a crowd!
You will need:
- Large glass baking dish (9 x 13)
- 12 fresh peaches, peeled (any kind, I used white peaches in the picture)
- 1 c. granulated sugar
- 1 c. flour (for gluten-free I recommend Almond Flour)
- 2 eggs, lightly beaten (egg substitute can be used, 1/2 c.)
- 1 cube of butter (or 1/2 cup of any butter substitute you prefer)
Pre-heat the oven to 375 degrees
Slice the peaches, about 1/2 - 1 inch thick, spread out in the baking dish
In a medium bowl, mix sugar and flour, then add beaten eggs
Use a pastry cutter or a plain old fork to mix it up till crumbly
Sprinkle over the peaches, distribute all of the crumbs "kinda" evenly
Melt the butter, then drizzle it over the crumbly topping
Bake at 375 for 35-40 minutes, until bubbly and turning golden brown on top
Allow the cobbler to cool down to a comfortable warmness, then eat!
This cobbler served all 14 of us at the BBQ, with no leftovers. However, 10 out of 14 BBQ participants ask if I had "any more of the peach cobbler" hidden somewhere? So next time, I will make two!
Part of living with chronic pain is focusing on doing things that make you feel good, no matter how simple. For me, baking is one of those feel good things. For this recipe, I was able to do all of the steps myself. However, remember to apply the 3 P's; Prioritizing, Planning and Pacing. For example, my priority was to do the baking, so I delegated shopping for the peaches and my husband picked them up in the morning on his way home from the gym. I planned in advance, so I would have the other ingredients on hand and I wouldn't have to run to the store to get something. I paced myself and was able to peel all 12 peaches. Some days my hands are too sore (Fibromyalgia symptom) to do this type of prep work. If that is was the case I would have delegated it to my teenage sons, who will do anything to get to eat cobbler! I did pace myself, by allowing enough time in the morning to get going slowly, then once I started on the cobbler I could go at a leisurely pace since the BBQ was later in the afternoon. It also would have worked fine to make the cobbler the day before, however that is risky at my house with two teenage boys!
Just a few days ago, Tuesday the 11th, to be exact, I had "one of those days" that those of us with chronic pain experiences every once in a while, or maybe more frequently, as in my case. Being a Phase 3 member of Kaiser Permanente's PMRP (Pain Management Rehabilitation Program) in Sunnyvale, California since April of this year, I am hard at work using the skills and tools I have learned. At the top of my skills list is the concept of "The 3 P's" which stands for Planning, Prioritizing and Pacing. This is a technique that we practice to break down each day and organize what we want and need to do in a way that considers what is the most important and how we will make each activity, task or event work around our challenges by breaking it down into doable pieces and at a pace that works for us in the given sequence of moments we call the "next hour" or the "the work day" or even the "whole day." So I had figured out Tuesday, with excellent planning and was looking forward to getting a few things taken care of... (previously posted on Pain Management Program Silicon Valley)
"Sigh...left
my home before 9am, felt good that I got it together before noon! Had 3
tasks planned; take my son to the gym, take my 13.5 year old standard
poodle to a new groomer, then head to the high school I would like teach
at next year to drop off a book I borrowed from the teacher that
coached me in 2011 after I got my credential. The good news is I did
all three things. The bad news? I let my son out of the car in front of
the gym but started to drive away as he was getting his gym bag out of
the back of my car. Had trouble finding the new doggie hair salon but
got her there close to on time. Then got to the school and my coach had
stepped
out of the office, so I introduced myself to the Assistant Principal of
Instruction, letting her know I would really like to teach there if she had any part-time openings for next year. I was excited, things seemed to be going well... as I waited I was
straightening my shirt, when I felt a tag on my right hip..strange. Oh
shit, my pants are on wrong side out! Now granted they are "Yoga
pants", thank you God these didn't have a white cotton crotch! I thought
I looked fine, My hair was brushed, my outfit was casual, however
school is out for the Summer, so all of the administrators were in
sweats or jeans with flip flops...l am now heading straight home! My "I have it all together feeling" felt shattered, yet I had to laugh at myself! I taught fitness classes from 1984 when I started teaching "Aerobics" until I retired from teaching Yoga, Pilates, Zumba and any other types of fitness in 2009. Never in my career had I had this type of "fitness attire wardrobe malfunction," despite the fact that it actually happens quite often to the poor group exercise instructors that get dressed in the dark to teach in the wee hours of the morning!
Not exactly the lore of "Band Camp" but amongst the fitness teachers of the world this is a common topic filled with many experiences that are probably high on TMI.
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!
Today is a day when it is so clear that I am happy and filled with the desire to do everything I love! I am challenged by the need to be aware of the 3P's at all times; Prioritize, Planning and Pacing to take the best care of myself physically as I can. Yet I want to just "do, do, do" all the things I love, NOW! I think to myself, "so what if I am tired tomorrow?" then I remember, it isn't just tired that may hit me tomorrow, and it may not be tomorrow, it may be in a few days... What if I can't stand up, my feet and lower legs hurt so much? What if I can't turn my head, my neck is locked up? What if my hands are numb and unable to hold a spoon, much less drive a car to take Trevor to basketball or hold the leash to take the dog out to walk and pee? As I type, I see a list of "What if's?" and I think in my old pattern of not showing any fear, forget about "What if?" and bravely charge forward, power through, show STRENGTH!
I love my old way, I can feel the lure of complete satisfaction as I clean my whole house (yes I love cleaning, I am type A), I go to the pool and swim my 2 miles (yes, I can swim 2 miles in well under an hour), I have a healthy, lean, whole meal I make myself from scratch (yes, I am a Nutritionist, I love to eat really healthy and fuel my body) then I study for awhile (yes, I am studying to add to my teaching specialties by taking State Tests to expand my teaching credential) then after that rest (yes studying is a physical rest only mental challenge) I prepare a great healthy meal for my family (yes again on the love of Nutrition) and I head off to Zumba class to dance away which frees my soul(yes it is exercise but I love it for how I feel inside, not the 600+ calories I burn on my high tech heart rate monitor), then I head home eat dinner with my family, followed by watering my patio garden of flowers and fresh veggies, then planting a new crop of fresh herbs, flowers from seeds and seedlings of baby lettuce so I have rotating crops for my amazing salads (never out of fresh, organic lettuce at my house!). At night (this means it is dark outside, not just evening) I will do my hand crafts; crochet, knitting, embroidery and sewing to make lovely things for my home, gifts for new babies and birthdays of all ages (I love to create), then work on the books I have started (yes 3 in the works, one is 90% done, the other two are around 40-50% done) or read for personal development and spiritual growth, followed by Yoga, meditation and sleep. As I fall asleep, I think about my plans for the next day and lay it out, one activity after another that I do love, without truly considering if my physical self is up for it. I am not doing harmful things, everything I choose is "good for me" and I do truly enjoy each thing I do!
My old motto, "Feel the pain and do it anyway" is not working. Yes, I can feel the pain, ignore it and carry on... Yet now I also experience decline in my physiology as my blood pressure climbs when I push through, my emotional states decline rapidly and I cannot risk my mental health and my physiological health for the sake of making others feel I am fine. Yes, my old pattern is familiar, it is respected by others and it protects me from people that say things that hurt, protects me from feeling I am "not enough" when I judge myself. The old pattern does not put me first, despite the fact that I am doing things I love, I am ignoring my whole self. The old pattern does not allow me to care for myself well or to respect myself how I truly am in this moment, in this part of life. I must allow myself to be vulnerable, accepting of my physical limitations, even when it leaves me open to things I don't wish to experience. I don't like when it feels like I am not doing the most I can do, when I am still I must be being useless or selfish. I can still do all the things I love, just not at the same pace or anytime I think to do them. It is health to choose to rest, to give myself nourishing time that is not productive in the eyes of others, to relinquish my control on everything in my life. I am now open to what is part of me now, and this must include acceptance of my chronic pain diseases.
I can't choose how others will react to my openness and honesty about where I am right now. This scares the shit out of me, in all honesty. I have lost close friendships and close family connections. It makes me so sad and I just have to hope for the best and keep taking good care of myself. I will not die from my chronic pain conditions, IC, PFD and Fibromyalgia are not fatal. However the physiological state of constant fighting, powering through and non-acceptance of self push the sympathetic nervous system to it's brink, which is fatal in many cases. For the longest time, I could not see how doing everything in my life to the best of my ability, in a quest for constant improvement could be "bad" for me? I now know that I was pushing, very hard, and I have only been able to see this in the last 4 months of my journey through acceptance and understanding of chronic pain.
I want to be free. Free to be myself, free of the pressure and the endless criticism. It is horrible to endure, knowing it is ruthless and cruel. The voice cuts through me, addressing my ideas, my thoughts, my creations and my body. Every choice I make is not perfect enough, plenty of room for improvement so just try harder she comments. Words dripping with hurt and poignant name calling. Her laughter is punishing, her sarcasm sharp and ruthless. I begin again, listening to a podcast of guided imagery for self-esteem, reading affirmations to build self worth. She rolls her eyes and gives me the look, not this shit again; you must be kidding! I dig in, working harder to come up with my own affirmation. I practice while swimming, trying to memorize the words I have chosen:
I love Brilliant
Beautiful
Fun
Loveable
Silly
Talented
Me!
That is all I can come up with,
So I stop and try to remember it, setting it to a rhythm in my head.
I put it in alpha order on purpose, so I can memorize it. I chant it in my head while swimming, driving into my subconscious I hope. She is ROTFL with this new attempt of mine. Gasping while telling me I am so fucking ridiculous! She snaps some pictures of me, displaying my swimming body with it's extra fat and my face with so many skin imperfections. How do you even go out in public, much less think you should be in a swimsuit? More cackling laughter and major swearing from her, the one who knows the real truth about me. I know she is planning her next attack, I push her out of my head, filling the space with swimming and breathing, stroke of my arms and beat of my heart powering on.
