Posted in Family, Journal, Conversation, Op-Ed

My Guy: When the Caregiver Gets Sick

Photo by See Jayne Run

Some of you know that I have been struggling for awhile. I have been feeling so lousy and have rarely left my bed. Consequently, I have felt that I had nothing of value to contribute to The Chronic Conversation. Needless to say, that’s not very heartening when I am such a newbie to the Blog World. Today, though, I got fired up and feel the need to write.

My pain journey would have had a very different path were it not for My Guy. He has been with me every step of the way, has patience beyond belief and has never, and I mean never, lost faith in me. I remember a conversation we had years ago when he told me, “I won’t give up on you as long as you don’t give up on yourself.” And I haven’t. I have certainly had really black times but I have always rallied in the end. I have not won the war but I’m still picking my battles.

There are many pertinent aspects of my relationship with my husband and how he has been indispensable to my chronic life. Since this is a blog, I promise not to write a book, so let’s discuss one aspect instead: What Do You Do When Your Caregiver Gets Sick?

In 2016, I traveled across the country to the family farm to spend some time with my parents. They had recently had some remodeling done to the farmhouse and my mom was having trouble with the contractors and bringing the project to a close. My dad, at 86, was in remission from stage IV lung cancer and while doing really well, he was not in a position to be of much help to Mom. And she was exhausted from firstly, nursing my dad back to health the year before and now, dealing with delinquent contractors and an entire house that needed to be put back together. I was in a fairly good place that Spring, physically and mentally; in a remission of sorts. So I flew out to the farm for what would become a few month’s stay. The farm has always been a rejuvenating place for me and I was excited to see everyone. Mom and I found a new contractor, got the work completed and I had a ball helping to redecorate and organize; two of my favorite things.

When I left home, My Guy was experiencing some fatigue and had been for awhile. We discussed seeing a doctor but he thought he was just having trouble sleeping and neither of us thought much more about it. I remember thinking at the time that maybe a break from worrying about me so much would be good for him. A welcome reprieve. I seriously believed that I was contributing to his stress, therefore causing added fatigue.

While I was away, in addition to a mountain of house stuff, I landed up in the hospital with a problematic kidney stone, because, sure, why not add to the load? At the same time, MG told me that his fatigue was getting worse and that he finally decided to see a doctor. Warning bells started to go off in my head. I can literally count the times on my fingers in the 27 years we have been together that MG has been sick. Knowing how long this fatigue had been going on and having him now relent and see a doctor must mean that something was seriously wrong.

Following two visits to the ER and surgical intervention, I was seeing a kidney specialist to wrap things up one day and MG was seeing his physician hundreds of miles away on the same day and ironically at the same time. He called me from the parking lot of his doctor and I answered from the parking lot of mine. The first thing he said to me was, “Don’t worry, I’m not going to die, but I have something called multiple myeloma. They say it’s totally treatable so I don’t think it’s a big deal”

My mom had accompanied me to my appointment that day. I remember sitting in the car across from her in the hot sun while talking with MG and feeling so relieved. I gave Mom the thumbs up, mouthing, “Everything’s okay. They figured it out.”

As soon as MG and I ended the call I looked up multiple myeloma on my phone as none of us had ever heard of it before. Oh. My. God! At first glance, this did not look like a “no big deal” to me. As soon as we returned to the farmhouse, I jumped online and began researching in earnest.

According to The Mayo Clinic, “Multiple myeloma is a cancer that forms in a type of white blood cell called a plasma cell. Plasma cells help you fight infections by making antibodies that recognize and attack germs. Multiple myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells.”

I begin to panic. In the past 27 years, whenever I was panicked or, let’s be honest, mildly upset, MG was there: solid, strong, unwavering. He is my rock, my touchstone, my reason in the face of insanity. But I was on the farm and he was way back home. I vividly remember sitting cross-legged on the big Civil War-era bedstead in the Red Room, Mom’s laptop to my left, my tablet on my right, feverishly taking notes on a stack of scratch paper from Dad’s desk, the bile rising higher and higher in my throat with each new fact I uncovered. I was bereft. My arms ached to hold MG. I needed him desperately. To comfort him. And to be comforted.

The plan all along had been for MG to drive across country to pick me up from the farm, along with a few antiques I found in some local shops. He would spend some time relaxing and hanging with the family and then we would drive back together with the dogs. Both of my parents and I were concerned about keeping to this plan. Driving from home to the farm was a long 2-day trek but MG loves to drive and couldn’t wait to get on the road. Road trips have always been balm to a smarting wound for him and nothing relaxes MG more than driving for a long period on the open road. The three of us could not dissuade him; he assured us he was not being irresponsible and knew he could handle it. He WANTED to do it: NEEDED to do it. I trusted him. The next day he was on his way.

The time between the parking lot phone call and MG’s departure from home to the farm was a matter of days. So not much time to process. The more I researched, the more frightened I became. I knew that I couldn’t rely on everything I found on the internet and tried to stay within the more reputable sites. But even those provided frightening statistics.

Holy Fucking Hell! I assure you I am selecting my verbiage carefully here. This is the part where the profanity becomes relevant: MM is an incurable and rare form of blood cancer and the survival rates are not high.

“Survival rates are based on comparing people with multiple myeloma to their peers who don’t have cancer. According to the American Cancer Society (ACS), these are the average survival rates by stage:

  • Stage 1: 62 months, which is approximately five years
  • Stage 2: 44 months, which is approximately three to four years
  • Stage 3: 29 months, which is approximately two to three years

It’s important to note that survival rates are calculated from the time treatment begins. The average is the median survival rate. This means that half of the people with multiple myeloma lived longer than the average length for each stage.

These figures include people treated over the past 5 to 25 years. The ACS notes that treatment has improved a great deal during that time period. This means that survival rates will hopefully continue to improve.”

I’m always the researcher in the family so MG tells me to see what I can learn about MM and we can make plans when he arrives. He, of course, knows it’s cancer as he has seen an oncologist but has been given very sketchy info by this man who does not specialize in blood cancers and whose bedside manner leaves a lot to be desired. Additional tests are ordered and MG is told to wait until all of the results are in before he makes any decisions regarding treatment. He will then be contacted by phone. He can take his planned trip and then he can began scheduling the treatment process upon our return. The office knows MG will be out of pocket for the two days he is traveling. MG packs up the dogs and hits the road.

Meanwhile, back on the farm, I am completely overwhelmed by what I am learning. I have a meltdown but make it a short one as adrenaline kicks in and I have work to do. My family is incredible and rallies round: the parents and all the cousins who live nearby. They are my lifeline now. A favorite cousin who is more like a sister is a veterinarian and her science background helps me to break down and understand the medical terminology and treatment protocols. She is there for me round the clock as I jump into the SUV and race the mile and a half to her adjoining farm to discuss some new fact I’ve discerned. And to hold me in her arms when I cry.

I stay up throughout the night researching oncologists in our area and read through hundreds of online resumes, trying to find the right specialist for our needs. As MG is driving, he tells me that he has gotten some information about a particular myeloma specialist from a physician friend who knows someone with the same disease. This someone has been in remission for over 14 years and tells our physician friend that MG should not see anyone but his specialist. The friend will text the name to MG.

I continue my research and end up with three myeloma specialists who stand far out from the rest in the field. But my gut tells me that one of the three is our guy. When MG arrives at the farm, he has the name of the specialist sent via text: it’s the same specialist. I feel that my research has been validated.

Let’s talk now about when My Guy arrives at the farm. Sweet Jesus, he looks horrible. I am in shock that in the few months I have been away, this is what has been happening to MG. He has aged fifteen years and has lost so much weight. There are permanent dark rings around his eyes and he looks haggard and, dear God…fragile. His face is as ashen as his hair and beard have become and I feel deep shame rising up within me that I have been away so long and not at home where I so obviously needed to be. When my sister/cousin sees him, she gives me a shocked look when he leaves the room and says, “My God, you’ve got to get him help now! We cannot wait!”

Now, MG is a warrior. He is a second degree black belt in Kempo karate and at 5’11 and 210 lbs, he is solid. His legs, which I adore, are like tree trunks. Not a sequoia but more elegant, like a Mountain Ash. He is firmly attached to the earth both in his level headedness and his spirit. He is strong, wins most arguments because he can shout louder than I, and can be rather intimidating to others, if crossed.

When he takes his shirt off that night as he undresses for bed, I want to weep. There are deep indentations where his arms meet his shoulders and he has an old man chest, not the brick wall which had last held me just a few short months ago. I have never seen him like this. MG trains regularly and although his extra 5 lb tummy comes and goes, everything about his physique is strong and healthy. But not anymore. A gaunt old man climbs into bed beside me that night and I crawl close, as though he could be snatched from me at any moment.

MG sleeps long and hard that night and in the morning tells us that it’s the best night’s sleep he’s had in months. After breakfast, we move upstairs to the great room with the laptop and all of my notes, as well as all of the paraphernalia that MG was given about myeloma to read up on. We begin comparing notes and then start making calls.

I cut and replaced this next section several times as it is a definite whine but I also think pertinent to the story. As MG was traveling, he missed two calls from the oncologist who diagnosed him but he wanted to wait until he arrived on the farm before returning the calls. He wanted to be with me when he heard the additional test results. Only two days have passed since the first missed call. That very morning as MG is about to contact the oncologist, the oncologist is calling him. MG answers but mobile reception is lousy in most areas of the farmhouse and as MG races to a better spot, the call is dropped. MG calls the office back at the same time the oncologist is leaving a very heated voicemail on MG’s cell.

It makes my blood boil every time I think about this bloody doctor. This physician knew about MG’s travel plans and that he might be difficult to reach within these two days. On the voicemail, he tells MG that he is not interested in working with a patient who obviously isn’t interested in taking care of himself and to find another doctor. When MG explains the missed connections to his nurse, reminds her about his travel, and that he just that minute missed the doctor’s call, she says she understands but that the doctor can no longer take his case. Although this seems entirely irrational to MG, he calmly tells the nurse that he understands but that he needs to speak with the doctor to get his test results. The doctor refuses to speak with him (we can hear him through the bloody phone bloody whispering to his nurse and the nurse is the one left giving MG the results. Who the hell does that? And wait until you hear the results!

Eighty percent of MG’s blood marrow is cancerous, he is going into renal failure, his skull is literally littered with lesions, and his cancer is at Stage III. We feel as though we have each been slapped across the face AND punched in the gut.

We stare at each other stupified. Our mouths literally hanging open. You find out you have cancer, you ‘re in shock, you play phone tag with a medical professional for two days and you’re deemed unworthy of care because said medical professional has been inconvenienced because you missed his calls? Un-fucking-believeable!

Onward! After we remove ourselves from the ceiling and calm down, MG proceeds to call the specialist we had both found. I find this serendipitous and we are both high with anticipation. His office staff is extremely professional and kind but explain that the doctor is booked six months’ out. Do we want to make an appointment? We do. Would we consider another physician in his group? Well, we prefer not but we answer in the affirmative anyway. She is available in 3 months. Okay. We also call the other two specialists I found in my research and make appointments. No one is available for at least 6 weeks. We’re not certain what to do. We’re still trying to process but remain calm. It’s not easy. What the hell do we do now? Do we have 6 weeks? We don’t even know how aggressive this cancer is and there is no one who can tell us.

MG and I are sitting upstairs in the newly added great room. It is a large room, hence the name and there are floor to ceiling windows on three sides. Outside there are scores of mature trees and rolling pastures. It’s a bright sunny day and all is calm and beautiful. You can hear a tractor motor in the distance and a cow calling for her calf. The dogs and cat are frolicking on the lawn and the cat is definitely in charge. We feel as though we are sitting in a luxurious tree house with all of the greenery spilling in through the tall windows. It’s truly a piece of heaven. But in spite of all of this peace and beauty and tranquility, we appear to have fallen deep into hell.

Dan’s cell rings and he picks up. It’s the office of the first specialist. The one who we both found and who was booked 6 months’ out. He will see us if we can be in his office at 7:00 am on Friday. Can we be there? It’s Wednesday afternoon and we’re 1500 miles away. MG says yes and concludes the call.

We’re speechless. Again! All of this has happened within 90 minutes. Relief that we are finally together sorting things out. Anxiety about trying to reach the oncologist. Disbelief followed by Anger at the oncologist’s non-response. Shock as we process the test results. Anticipation as we attempt to see the specialist. Disheartenment as we realize he is booked so far out. Fear as we cannot find anyone to see us right away. Helplessness as we are not certain how to proceed. And now, Excitement and Relief and Dismay and Hope that a miracle may have just happened.

MG paces the room, anticipation growing. “We need to get the dogs and get packed right away! Can you be ready in half an hour?” I look at him and try to focus. “We’re not driving. That’s crazy! We’ll fly there, go to the appointment, fly back and drive home.” MG agrees. “Of course. I’m not thinking straight.”

I jump onto Travelocity and look for flights. The only option for us is to use a regional airport but flights are few. I get us booked on a morning flight but with two layovers, we don’t arrive at our home airport until midnight. By the time we get home and crawl our sorry bums up the stairs to bed, it’s past two in the morning. Our appointment with the specialist is in five hours.

To be continued: When the Patient Becomes the Caregiver

Posted in Journal, Conversation, Op-Ed

Down for Repairs

I’m taking a break as I rest up from a little treatment for my occipital neuralgia. So many of you have been so kind to stop by and visit and take the time to leave a comment or two and I just adore reading your notes and getting to know you all better. Thank you! I haven’t had it in me to respond much but I will soon!

Until I’m back and really able to dive into the blogosphere, I want to quickly mention a couple of things. I have visited so many of you and made comments to your posts or sent greeting emails through your contact pages and I think I may be ending up in your spam folders. Several of you have found me there and simply from the amount of comments that appear to have gotten lost in the ether, I can’t imagine that many of you have rejected me. (Oh no! That didn’t really occur to me until this minute!!)

I also have noted that many of you have mentioned that you have had trouble commenting on my site. Until I get this all figured out, I just wanted you to know that I’ve heard you and am trying to remedy it. Until I do, please don’t forget about me or lose faith in my commitment. We’re just getting to know one another!!

Hope you all are having a good week!

Posted in Diet, Journal, Conversation, Op-Ed, Recipe

See Jayne Cook: Dry Rub Grilled Triangle Tip Steak

Photo by Jennifer Olson

I don’t know about you but one of the most difficult things for me to manage while living with chronic pain is my diet. Not much of a cook to begin with, when I’m in serious pain and My Guy isn’t around to whip up something wonderful, it’s a real struggle to eat well. Many days, just getting down to the kitchen can feel like a trek. So I need to grab and go. On good days, I can do a little cooking if there’s not a ton of knife work involved or it’s not necessary to be cooking in front of the stove for a long period of time.

This recipe can be cooked in components, there is very little kitchen prep, and the time in front of the stove or grill is manageable. Everything reheats beautifully and you can switch up the overstock the next day by tossing it all together to make a flavorful chilled salad. It’s also gluten and dairy free. I hope you enjoy!

Recipe from Mix Match Make Take: High Energy Food for High Energy People Bookcrafters Copyright 2018 Daniel J. Witherspoon

Dry Rub Grilled Triangle Tip Steak

Make Hot and Fresh
Roasted Tomato Salsa, Grilled New Potatoes,
Roasted Asparagus

Makes 4 Servings

Serve The Next Day Cold
Bed of Mixed Greens, Scallions,
Roasted Pumpkin Seeds

Makes 1 Serving

Grilled New Potatoes

  • 1 lb new potatoes, any color
  • Salt and pepper
  • 2-3 Tbsp olive oil

Preheat grill or indoor grill plate. Wash potatoes and place in a medium saucepot. Cover with water, add a pinch of salt and place on stove. Bring to a boil, reduce to a simmer and cook for 15-20 minutes or until potatoes are tender. Drain and let cool.

Cut potatoes in half and place in a medium mixing bowl. Add salt, pepper and olive oil and toss to coat. Place on the grill, cut side down and cook 3-5 minutes, or until potatoes have nice grill marks. Remove and serve when ready. Potatoes may be served hot or cold.

Roasted Tomato Salsa

  • 3 small tomatoes
  • 1 Anaheim chili, stemmed, split and seeded
  • 1 small yellow onion, sliced ¼-inch thick
  • 1 Tbsp olive oil
  • Salt and pepper
  • 2 cloves garlic, peeled and crushed
  • 1-2 limes, juiced
  • Optional, 2 Tbsp stemmed and chopped cilantro

Preheat oven to 350°F. Core, split and squeeze the seeds and juice out of the tomatoes. Place the chili, sliced onion and tomatoes on a baking tray. Lightly coat with olive oil and sprinkle with salt and pepper. Place in the oven and roast for about 20 minutes, until the vegetables are soft. Remove and let cool.

Place the chili, onion, tomatoes and garlic in a food processor and blend well. Add half the lime juice, then season with salt and pepper to taste. Add more lime juice as needed. Transfer to a serving bowl and stir in the cilantro, if using. Will keep covered and refrigerated for up to 3 days. Makes about 2 cups

Roasted Asparagus

  • 1 bundle asparagus, woody ends cut off
  • 1 Tbsp olive oil or to coat
  • Salt and pepper

Preheat oven to 350°F. Lay the asparagus out on a metal sheet pan without stacking. Brush with the olive oil and sprinkle with salt and pepper. Place in the oven and roast for about 7-12 minutes, depending on the thickness of the spears, or until the spears are bendable and tender to the bite. Remove and serve, or let cool.

Dry Rub Grilled Triangle Tip Steaks

  • 2 Tbsp Ancho chili powder
  • 1 tsp salt
  • 1 tsp black pepper
  • 2 tsp sugar
  • 2 tsp dried oregano
  • 4 each 5-6 oz triangle tip steaks, about 1-inch thick
  • 2-4 Tbsp olive oil

In a mixing bowl, combine the chili powder, salt, pepper, sugar and oregano. Liberally coat the steaks with the dry mix. Cover and refrigerate for at least 30 minutes or overnight. Brush the steaks with the olive oil when ready to cook.

Heat a grill or cast iron skillet on high heat. When hot, place the steaks on the grill or skillet. Cook for 5-6 minutes, then turn over and cook for an additional 5-6 minutes. At this point, the steaks are medium rare. Add 1-2 more minutes per degree of desired doneness. Remove and set aside to cool slightly.

Serve the Next Day Cold

  • Large handful mixed greens
  • ¼ cup chopped scallions
  • 1 Tbsp roasted and salted pumpkin seeds
  • ½ cup Grilled New Potatoes
  • 1 Dry Rub Grilled Triangle Tip Steak, sliced thin
  • 1/3 cup Roasted Tomato Salsa
  • Any other raw, sliced or shaved vegetables (e.g. carrots, snap peas, mushrooms, celery, green onions, fennel, bell peppers)

To Assemble
Pack all ingredients in separate containers. When ready to serve, place all ingredients in a serving bowl and toss together.

Posted in Journal, Conversation, Op-Ed, Pain Management

Step Away From The Story!

Photo by Annie Spratt

On and off throughout my pain journey I had seen a therapist who greatly helped me (and My Guy) with pain management techniques. If I take nothing away from the long hours we spent together, it is this most important thing: YOUR PAIN IS NOT YOUR STORY. REMOVE YOURSELF FROM THE STORY!

He was so right. It’s the best pain management technique I have in my arsenal. When I begin to lose the juggling game and my rings start falling to the ground (see previous blog Lady of the Rings: Pain Management is an Arduous Juggling Act), I NEED TO STAY OUT OF MY HEAD! If I can do that one thing, I can survive the complete car crash and get my rings back in the air sooner rather than much, much later. Unfortunately, I kinda forgot to remember this recently.

Everything seems to hit me three times harder than the Non-Chronic. I get that cold that everyone has and they’re down for 3 days; I’m down for 9. I have a minor surgical procedure and expected recovery time is 2 weeks; I need 6-8. Bloody frustrating as all hell!

My rings have been falling out of the tapestry for months now following some minor surgery I had in March. Once the surgery was scheduled, I anticipated this happening and tried my best to prepare for and prevent it from occurring.

Prior to surgery, I was doing really well with the juggling act. So, I thought I was well prepared. House (ring) was clean and well organized. This is key because if I need something, I know exactly where it is and I don’t need to expend unnecessary yet precious energy searching for it or crawling over a mess to get to it. I’ve been eating (ring) clean. No overly processed foods. Gluten, sugar and dairy are at a minimum. Plenty of protein and leafy greens. I’m getting daily exercise (ring) and meditation (ring). I’m in a good place with my family (ring) and friends and have made a point of reaching out (ring) to others instead of staying cocooned. I’m sleeping (ring) well and, last but not least, I have the appropriate medications (ring) in line with both surgical doctor and pain management doctor. All of the boxes are checked; all eight rings flying high. I am in a great place in my head and know I have this little surgery down!

Then all freaking hell breaks loose. And most of it, I did to myself. I forgot to Step Away From The Story!

Bad Timing. I was in a great place when I made arrangements for an absolute favorite person of mine to visit for a week just before the surgery. This is a person who is very important to me and we generally keep in regular touch via text about most aspects of our lives. She has kept me going a lot of times when there was no one else to whom I felt I could reach out. (Aside from My Guy. My Guy is a blessed constant.)

Just prior to her arrival, two things started to hit me very hard emotionally. 1. The first anniversary of my father’s death was approaching. 2. I began reading about and hearing about people who had died from multiple myeloma.

I don’t want to veer off course here so quickie backstory. 1. The Big Reminder of my dad’s passing was also shining a bright light on some family drama that is indirectly breaking my heart; therefore the approaching anniversary was not only reminding me of my dad and and our last days together but ridiculous drama that occurred after his death. 2. My Guy has both had a full complete response to treatment of and is in full remission of multiple myeloma, an incurable blood cancer. Now, My Guy can spin circles around me. He is now as healthy and strong as a horse, not a single cancer cell in sight. And we NEVER think that MM will beat him. But for some bloody reason, I’m being hit with deaths from MM everywhere I turn: in my daily news feed, a magazine I randomly pick up, my dentist’s cousin’s wife’s uncle, the damned novel I’m reading!

So now we’re off to the races because I’m in my head. I’ve allowed The Story to take over without even realizing it. The story is that I didn’t do enough for my dad; I am becoming estranged from my family; and I’m going to imminently lose My Guy. NONE OF WHICH IS TRUE! But I’ve already begun the narrative. There’s no turning back now.

Bad decisions. So my company is about to arrive. Party Time! Vacation! I begin to make unwise decisions. The first thing I do is get crap food in the house because you have to have cool and unhealthy snacks during Vacation Party Time. Now I know better than this. I promise you I do. I’m married to a professional chef, for heaven’s sake. And especially since his diagnosis, we eat wisely! But in the past, food had always been my go-to for Comfort, and now, in my weakened emotional state, I’m forgetting my good habits and heading straight for Comfort. I’m doing it on autopilot; these are not conscious decisions.

Favorite Person (FP) has arrived and it’s wonderful! Until it’s not. I’m visualizing a calendar in front of my face and seeing the countdown of days until my dad’s death anniversary. Why this is suddenly a thing with me I have no idea. We were able to prepare as much for his passing as one is able to prepare for such things. It was not a surprise but a natural course of events. But it’s like I’m expecting a massive explosion or something on Anniversary Day. Impending Doom. It’s an actual physical pressure building up inside of my body. And because of this, the Family Drama has become bigger and bigger and bigger in my head and it’s now playing on a constant loop. And then, of course, My Guy could die soon. Let’s not forget that.

Of course, all of this internalized drama, excess emotion, and lousy diet are affecting my pain levels which then is affecting my sleep. I’m not thinking clearly; the fibro-fog is rolling in fast and thick. I’m having difficulty focusing on conversation because I’m fixated on the pain and that’s adding to The Story. I’m getting short and crabby with FP. We had a reasonable activity agenda set prior to her arrival but that’s now become too much for me both physically and mentally but I don’t want to disappoint her. This is her vacation and she’s taken precious time off from work. I lose my temper and say some things I do not at all mean but I’ve hurt her. I apologize profusely and all appears to be well, but I know FP. The damage is done. I hate myself.

Shortly after she leaves, it’s D-Day. Not June 6th. Anniversary of Death Day. The following day is the surgery. I fall apart completely. I’m mourning for my dad like he died yesterday and grieving for my broken family. I’ve just had intrusive and painful surgery. I’m hurting everywhere. And I can’t get FP out of my head. I’m running with The Story again. I’ve let her down. She seems distant. How can I make this up to her? Has irreparable damage been done to our relationship? How soon will it be before My Guy’s cancer returns? What if he doesn’t respond to treatment this time? Will he die? My pain is never going to go away. I hate my life. Can’t I ever just have a freaking good day? It’s going to take me forever to recover from this. How many surgeries do I have to have? I look so old. And on it goes. I’m an official resident of Crazy Town.

Some miracles DO happen. I recovered well from the actual surgery. But after the necessary recuperation period, I couldn’t get back up again. All of my rings had fallen to the floor.

My clean and well organized house had become messy and disorganized. I became re-addicted to carbs, sugar and gluten and was freely eating the old junk trying to find that Comfort I (mistakenly) thought it had once given me. I hadn’t been exercising and when I started again I overdid it and then literally couldn’t move. My spinal pain became worse than it had been in recent years and the sleeplessness went on for weeks. My meds had gotten out of sync, causing strange nerve sensations and uncontrollable body twitches when I would try to rest. The nights were endless and agonizing. Screaming anxiety had taken control and capital D Depression was close on its heels. The black hole started sucking me in and I couldn’t seem to help myself. And, of course, The Story kept expanding and getting juicier with each passing day. I completely forgot the strongest tool in my pain management toolkit! I had become the freaking story!

Now I clearly did most of this to myself. Had I not allowed The Story to take over, I wouldn’t have gotten myself into such a fix. Oh, I would have dropped a few rings, sure. But with the right attitude, I could have easily added them back into the tapestry as soon as I was physically able to do so. Instead, I began the slick slide into The Dark Place.

Thank God I had a few aces up my sleeve! 1. My Guy, ever constant, ever loving, ever patient. (How does the man bloody DO it??) 2. My very smart and compassionate pain management doctor who really listens and never blows me off. Even when I sit in his office in a wet puddle of streaming tears and hiccoughing sobs. 3. Me. I somehow found the strength to stop listening to The Story. Every time I’d think a thread of the narrative, I’d stop myself by saying, NEXT! A hundred, five hundred, one thousand times a day. Over and over and over again! Next! Next! Next! Until The Story slowly began to fade and lose its power over me. Between the three of us, we were able to get me jump-started. Yet again.

Tomorrow I get my house cleaned! Seven more rings to go…

Posted in Journal, Conversation, Op-Ed

The Lady of the Rings: Pain Management is an Arduous Juggling Act

Photo by Berto Macario

As we are all different, we all process our pain and emotions in myriad ways. I have been struggling with debilitating pain for 18 years. Prior to that, in my youth and early twenties, I struggled with severe anxiety and depression. I have experienced the dark night of the soul. But through countless struggle, I have found my way into the light. The goal for me is balance: the only pathway I have found that has no dead end. It sounds so simple but it’s actually damned monotonous and bloody hard work to attempt to live a life in balance while in constant pain. The slightest swerve has the potential of a car crash. But if I do not strive for balance scores of times throughout each day, I literally cannot get out of bed on the following day.

I’ve become a juggler; slowly learning a talent I never really had much dexterity for achieving. But as this necessity has been foisted upon me, I have slowly developed somewhat of a skill in keeping several rings in the air, flying overhead in a constant flurry. Once in a very great while, the stars align and I am able to keep all of the rings flying and it is indeed glorious. Life is beautiful and exciting. Adventure awaits around the very next corner.

Sometimes I drop one or two of the rings but manage to keep the others aloft, painstakingly re-adding the lost rings to the twirling tapestry one slow movement at a time. Life still goes on and the refocusing upon the dropped rings often results in new breakthroughs and achievements that may not have otherwise been found.

In a perfect world, we would be able to keep all of the proverbial rings in the air and manage our chronic illnesses with, well, perhaps not ease, but at least with efficiency. Unfortunately, fibromyalgia and chronic illness merrily fucks with our rings.

I have come to learn that, according to the laws of physics, it is inevitable that, at some point, there will be several triggers, a massive flare will ensue, and all of the rings will fall to earth, one after the other, as we watch, seemingly in slow motion, our entire world falling apart. It is tragic. It is devastating. We think there is no possible way that we can go on. And then, slowly, we pick up one ring, and then another and another. And then it is time to start juggling all over again.

Most people have a juggling act: their rings are generally made up of something like career, relationships, family, health, and religion or spirituality. Those of us with chronic health conditions have an additional set of rings to juggle and discovering what those rings are is imperative to managing our pain and living a life with meaning.

These are the rings I must juggle daily, and in no particular order, to maintain a purposeful life: diet, exercise, family, reaching inward, reaching outward, pain management toolkit, home, sleep. Each of these requires regular attention and care. For me, my over-active neural pathways are just as affected by any dereliction of these rings as is my heightened awareness to sound and light and pain during a fibro flare.

This is my world, these eight rings that rule my life. Each is necessary for the others to survive. And so, as my constant focus is to each of these rings, so will be the focus of the posts within this blog.

Posted in Environment, Exercise, Journal, Conversation, Op-Ed

Budding Into Life Again

Rooftop Deck ~ Photos by SeeJayneRun.com

This is my favorite time of year: pre-summer, as spring is such a late arrival in my neck of the woods. I’m blessed to live in a part of the country that gets lots of sunshine year round but the cold and wintry days can still get me down. As with everyone, and particularly those of us with chronic conditions, the weather can play an enormous role in our daily physical and emotional health.

The science may tell us it’s a coincidence but most of us who have broken a bone, suffer from arthritis, or have had surgical repairs with metal can be excellent weather forecasters. We can tell you when there’s a change in the barometric pressure, not because we’ve seen the local forecast, but because we can feel it in our joints and bones. The country seems to have gone crazy with its recent erratic weather changes and I’m good and ready to get off this particular roller coaster. Hot as blazes one day, serious snowfall the next; that mess melts and then several days of severe thunderstorms and tornadoes touching down all over the place! Every time the barometric pressure changes, I can feel it in all of my surgical sites and it just radiates…well, everywhere! The cervical site leads to migraines and the lumbar site radiates down both legs. Sleep is impossible and when the changes are so constant and erratic, there’s never a break in order for the body to stabilize. Discomfort turns into misery and day follows day follows day.

But now…I think…I pray…summer is almost here to stay. And perhaps there can be some balance again. That, my friend, is a damned good feeling! When you’re in constant pain, your world can become very, very small, so opening all the windows and doors, bringing a little sunshine and fresh breezes inside and being able to merge with the garden is extremely liberating. Simply sitting on the front porch with my morning coffee brings me one step closer to being out and about in the world. I may not necessarily be going anywhere, but…well, I am slightly less removed.

The balmy days somehow give me strength and confidence again so when my little terrier looks at me longingly with his leash hanging from his mouth, I actually feel like, yes, maybe I could be taken for a walk today. And maybe we can go a little further than we did yesterday.

When we return from our stroll, even though I’m out of breath and need to lie down now!, the swing in the garden awaits. I collapse onto the soft cushions as Bentley noisily laps up a refreshing drink. The pain is loudly acknowledging itself but it’s manageable. The sun is shining, the breeze is cooling, the fountain and wind chimes are tinkling and the aroma of lilacs intoxicates me. And Bentley and I are a part of it all. Not a bad day.

Posted in Reaching Out, Recognition

Congratulations to Kim!

Photo by Jason Leung

Massive kudos to my new friend Kim, fibromyalgia advocate for awareness. She produces a terrific blog that is as much fun as it is information-packed and I have recently enjoyed taking a deep dive into it. You can find her at I Tripped Over a Stone and make certain you do because it’s worth the stop. She has just been nominated for and accepted both The Blogger Recognition Award and The Sunshine Blogger Award. Woo Hoo! You go, Girl!

Kim has been instrumental in helping this newbie blogger get her act rolling and somewhat together and I am both humbled and grateful. Thank you Kim and congrats on the cool blogging awards!

Posted in Family, Journal, Conversation, Op-Ed

Sweet Captain Riley

Photo by SeeJayneRun.com

This is Riley. Yesterday, he traveled on his final journey. He was 15 people years old. Or, if you’re a Silky Terrier, 76 years.

You may wonder what the life and death of my little dog has to do with chronic illness. Nothing. Everything. He was a part of my journey. And now he is gone.

In 2004, we were preparing for what would be the first of several spinal surgeries. My husband, a professional chef and educator, works long hours and we have no family nearby. So we decided that a small dog would be a smart addition to the household. Yes, we had a cat, but Max, though very sweet tempered, definitely had her own agenda. I wanted a buddy, a cuddling pal, a walking partner when the time came. A puppy would be a comfort and good company as I recuperated.

Except that we got far more than we bargained for. I did about six months of research on breeds and finally decided upon the Silky Terrier. These smart, highly trainable, non-shedding dogs could easily adapt to my activity level and were not known to be “yappers”. I was hoping for a sweet puppy whom I could train to do his business outside, socialize well with other dogs and people, heel on a leash, and snuggle and cuddle in front of the television. What I didn’t expect was an old soul. A wise and loving bundle of joy wrapped up in the silkiest and most sweet smelling coat imaginable. He was by my side as I recovered from five spinal surgeries, attached to my hip as I lay in bed. During the long dark years of insomnia, he kept vigil with me throughout the endless nights. When the pain overwhelmed me and all I could do was sob, he’d gently kiss my face to let me know he was there. Just one or two little licks with his sweet soft tongue.

Riley came to live with us when he was 8 weeks old. He was smart and attentive. He calmly told us what he needed when he needed it and then waited patiently for us to provide, confident that we would be there for him. And he was always there for us. He showed us how to be at peace when we had forgotten how. How to accept and just be in the moment. When My Guy and I broke and let all of the physical, emotional, financial, mental, social, and environmental crap that inevitably accompanies chronic illness, finally get to us and the only way we knew at the moment to deal was to rail at each other, Riley, who always wanted to be wherever we were, would calmly stand up and walk out of the room. He didn’t bark or run or cower. In his way, he simply told us to knock it off, calm down, find a better more effective way to communicate and cope. And we did.

Riley was all boy. He was an ideal travel companion. He had a slender, elegant build and a regal stance and even though he only weighed 12 pounds, he was a powerhouse. He had such personality. He feared nothing, he never complained, he accepted whatever the situation happened to be and simply got on with it. If only I could live my life as he did.

In his last years, he lost his sight and could no longer run and play. But he was able to navigate his way through the house and yard well and his temperment never altered. When he became ill, he needed more from us as his days became more difficult but he still never complained. On his last day, he very clearly told us it was time to leave us and he took his last breaths as he lived his life: with calm, peace and dignity.

My arms ache to hold my little guy. To feel his soft coat against my cheek and smell his sweet puppy smell. I pray I don’t forget the lessons he imparted, the love he freely gave, and the peace I always felt in his presence. Sleep well, little one. I am forever grateful for your friendship. But I’m gonna miss you like hell.