New symptoms every day!

I tried Pilates for the first time on Sunday and really enjoyed it. I could readily identify what challenged my muscular imbalances, but I didn't feel like it pushed me beyond my "safe" range.

I've been going to yoga about 1x week for a while. For the most part, I've been very careful as I move through poses. Moving slowly and cautiously. In the last two weeks, I've said "F it" and just want to  just do yoga. I'm surprised I haven't had more difficulties and discomfort from this more reckless attitude. The usual aches and pains are ever present.

My typical sensations are a tightness in my groin on the right. It feels like my underwear is too tight and pulling/pinching. Unfortunately I get this sensation even when I am not wearing underwear. Sometimes that sensation becomes more sharp and feels like there are little shards of glass in the groin. It's painful, but not excruciating.
Most of the time, my hip just doesn't want to work correctly and I walk funny. Some things get better with inactivity, some get worse.

Sunday evening, a new sensation appeared. I say sensation because it's not exactly painful. More annoying than anything. My entire right butt cheek is warm. It feels like I have embrocation on my butt! Sometimes the warmness increases to a point that brings more discomfort but it doesn't last long.

I posted about this on the PAO facebook group page and several others commented that they too have experienced this. Most indicated it is "nerve pain". I just wonder what set it off.

I haven't been on my bike in more than a week. I was going to ride the trainer and try out Zwift again last night but our bathroom renovation started yesterday and I was a little overwhelmed by it all in the evening. The cats do not like being sequestered to the main floor and pestered me all evening and  throughout the night, trying to escape to the upstairs world. I was also concerned about getting a shower after my workout (I'd have to drive to the gym or a friend's house). I'm taking a full pilates class (more than the 30 minute demo) and heading to Cindi's house after to feed the furry beasts. I will use that opportunity to bathe again. Taking it where I can get it.

Diminishing returns

I've contemplated starting this back up for some time but wasn't sure if it was worth it. I've been reading a lot of blogs about other people's experiences, thoughts, recommendations and journeys but unsure if lending my voice would lend anything meaningful.
I think I'll take a stab at this blogging thing again, more for my own processing and archiving than anything else.

I used to be a cyclist. I've been clinging to my identity as an amateur athlete for the last year, but I am watching it slowly slide away from my reach each day. My experiences to this point have been a little surreal. It started with some pain in my hip a couple of years ago. Despite it, I was able to ride, train and race, but the injury was nagging and would often worsen in the winter months when strength training and trainer time increased. I was able to do most things I wanted to do but I noticed fatigue, lack of ability to recover as quickly, muscle aches... You know, the stuff most people deal with as they age.

At first, I tried rest, ice, arnica/biofreeze. Massage, chiropractic appointments, a round of PT came next. Despite these interventions, I wasn't feeling better, but still riding. There were good days, and not so good days. I tried to keep up with running as cross training and watched my speed decline as the pain grew.

In February 2016,  I finally saw my PCP and he referred me to a Sports Orthopedic MD. Dr. Nawas took xrays and ordered an MRA with contrast. On my 41st Birthday, I received a diagnosis:  Hip Dysplasia, a small labral tear, impingement, cam lesion. For some reason, the Hip Dysplasia was not what I focused on in that appointment. I'd never heard of that in humans before and didn't think it was that big of a deal. I was concerned about the impingement, labral tear and cam lesion.  That appointment was kind of a blur. Dr. Nawas told me he could not treat me. He said there was a doctor in St Louis who specialized in a procedure that may be able to treat this.

I moved forward with doctor appointments and went to see Dr. Clohisy at Barnes about 6 weeks later. He confirmed the Hip Dysplasia and threw out some other terms I didn't fully understand. He assured me we didn't need to even think about surgery at this point and wrote scripts for anti inflammatory and a cortisone injection. Relieved, I left his office with the injection appointment and started Meloxicam.

I started the Meloxicam right away and didn't think I noticed a difference, until I had to stop taking it the week prior to the cortisone injection. I was very anxious about the cortisone injection, after the MRA essentially left me unable to lift my leg to walk for several hours and caused increased pain in my hip (I think from having my toes taped together in the MRI machine for 45 minutes). The injection went quickly, without incident. I was hopeful it would be amazing and wonderful, but I am not sure it made much difference. I was still having pain in my thigh and above my knee when riding hills, in wind or pushing hard.

Still, I continued to ride and race as much as possible. I managed to keep up with the Wednesday Night Time Trials, with times that were not that far off from the last 2 years. I experimented with kinesio tape on my thigh and knee, with position on the bars, saddle, maintaining a flat back and opening my pelvis. As the season ended, I watched my training volume and intensity decrease gradually but steadily.

August brought my follow up with Dr. Clohisy. The cortisone was not the magic shot I had hoped for, but I went into my appointment hopeful that there were other, non-surgical, options yet to be explored. I was completely taken by surprise when the resident started to explain the surgical procedure, "Dr Clohisy will cut your pelvis in three places....." Woah! Wait a minute.....

I managed to convince myself and Dr. Clohisy that another round of physical therapy was really what I was missing. We agreed to put off a surgery decision until I had gone through a few more months of PT. I set up an appointment at Washington University for late August. In the meantime, I started investigating some personal training options, to compliment the PT work.

My PT assessment gave me some insight into what was happening, but also lead to more pain, frustrations and questions. I've learned my glutes were not firing and I have significant muscle imbalances, particularly on the right side. My quads and psoas are overactive, trying to do all of the work. I also learned that some curvature of my spine is further complicating and adding to the imbalances and challenges.
I left PT with exercises and hope. Despite making improvements over the next several months, I felt like I was going backwards on the bike: Struggling to ride, still having pain and moving slower than I have in years. In November, the PT said I was successful by her goals but those just weren't in line with mine. Her response was to give me a list of things to stop doing, which pretty much consisted of everything I was interested in doing. I cut out most of my strength training, all running, did very gentle modified yoga, limited riding and trainer workouts. Yet the pain would still come.

It's tough though. So many people around me are in PAIN. Like make you want to toss your cookies and see stars. I don't have that kind of pain. Rarely, if ever, do things hurt more than a 5 (sometimes, if I've "pulled" something, it momentarily goes higher but I can avoid those movements until things improve).

Sometimes I get defiant and I try to do things I know bring me pain. I tried to run a 5K in October and could barely walk at the finish. Sometimes my joint just "isn't right". It just doesn't move correctly. I struggle to take stairs the normal way, foot over foot. But I can live like this, right?

After looking at how much I've modified my life, I decided to go back to Dr. Clohisy with the consideration of surgery. Phil accompanied me, and we ran through my long list of questions with the resident and Dr. Clohisy. The outcome was a surgery date: July 17, 2017. Periacetabular Osteotomy.
Dr. Clohisy will break my pelvis in three places to provide better coverage of my hip socket over my femoral head, shave some off the cam lesion off the neck of my femur, if necessary and I'm not entirely sure what else. I'll be gifted with several screws holding my pelvis together while the bones heal. I will be on crutches for 6-8 weeks of non-weight bearing and then moving off crutches over several more weeks. All in, it's about a year to fully recovery, but the success rates are pretty good. I figured I could schedule surgery and still "see how things go" over the next few months. Really, no matter how I look at it, I'm screwed.

My head's a mess from all of this. I'm barely on my bike at all any more. I've ridden outside less than 6 times since November. My trainer time reduces each week. I'm isolating more and more, although there's not been much opportunity to be social. I don't seem to even get invited to ride with the usual friends any more, but I understand I'm more of a burden to include now. I feel like I've fallen out of favor. I'm still here. I'm just a different version of myself.

I don't even feel like they really understand what's going on with me. Wow, that sounds whiny. And I don't really understand what's going on with me.
Maybe I'll just sit with that for a minute.

Final Goodbye

Sasha came into our lives as a 3 month old kitten from the Humane Society on Macklind in June 2001. There was some discussion about him actually being 6 months old, born in December 2000, instead of March 2001, but I don't think there was any merit to this. He was so tiny, even smaller than a typical kitten. Sootie Poot was not even a year old but already so much more mature. They didn't snuggle close like sibling kitties often do but had a great relationship nonetheless. Sasha was supposed to be Phil's kitty, Daddy's boy. I brought him home in the box from the shelter and presented him to Phil in our spare bedroom. We named him Sasha, a name we'd picked out before we had him. It's a "manly Russian name." Over the years, he gathered many nicknames. Early nicknames included "Sasha Bin Laden" (because of his hiding under the covers, like hiding in caves!), "uncle chuck" for the way he looked when he stood tall on his hind legs, "Boy!" "Bubba", "Bubbas", "Mister", "Mister-Man" "Dude", "Doot-do", "lovey" .... I could go on and on. Each nickname highlighted a piece of his personality. The thing I will always remember and cherish is how much he loved me. The plan for him to be Phil's boy backfired. I can confidently say this boy loved his momma above anything else.

He loved me until the very end. Phil has said that he believes Sasha wanted to let go at a time when I wouldn't be here to see his final suffering and goodbye. I am trying not to beat myself up too much for not being home when it was time for him to go.  I was able to work from home all week and spend the days with him. He wasn't as present or affectionate with me in the last week. I think maybe he was separating himself a little. He did snuggle me in our last night together and on his final morning. We snoozed and snuggled a little longer than Phil and, as I did every morning, I carried him downstairs in my arms to breakfast.

Over the last few weeks, he was eating less, more lethargic. I would feed him as often as I could, as much as I could, whatever I could. Sometimes that would mean spoon feeding him baby food from the jar. I'd even started putting the high calorie paste in his mouth each day, just to give him a little extra, although he didn't appreciate that as much. Since his Triaditis diagnosis in May 2011, Sasha had received steroid and b vitamin injections every 3 weeks. We had ups and downs with weight, energy, demeanor, socializing, etc, but we knew in the last couple months that the end was drawing near.

He spent almost 2 months with a "Donut" (round e collar) due to a wound and stitches on his leg. His skin had become thin from the steroids and the injection sites would easily become a larger wound. He was so adorable in that donut but we desperately wanted it to be off him. We'd give him "naked" time whenever we could, but after pulling out his stitches twice, we realized he'd need to keep it on until the stitches were out.

One morning in March, Sasha started breathing in a labored, gasping way. I brought him to the vet clinic, where he was diagnosed with a gallup murmur. The doctor indicated we could try to treat this with another pill, given daily but we decided to focus on his quality of life rather than quantity and prevent another traumatic daily medication. The triaditis was already progressing.

I believe it was the heart condition and a stroke that lead to his death on May 24. In a way, I am grateful and relieved because I feared he would just keep wasting away to nothing. He was once more than 8 lbs and at the very end, weighed a little more than 5 1/2 lbs. I take some solace in the fact that he is no longer suffering and his frail little body is made strong, whole and perfectly complete again. What I am left with is a hole in my heart that will never be filled.

Sasha was my little man. I carried him and held him more than any other kitty in my life. He sat cradled like a baby in my arms (on his back) or on my hip like a toddler, holding on with his little paws around my neck. From the moment he came into our lives, he "nursed" from ears. At times this was more snuggle and lovey but he could get pretty intense with his affection! He would often choose to do this at 3-5 A.M.! Later variations of the nursing included him giving me "wet willies"- putting his wet nose in my ear, or up my nose, or trying to burrow into my mouth! He snuggled me with such force.

I could always see from the look in his eyes how much he loved and adored me. Even from across the room, I could "call" him to me just by making eye contact. There was a depth of love in those little eyes. In those moments, I was his world and he was mine.

I am trying desperately to hold on to all the little memories. All the ways he snuggled, all the times he curled up in a tight little ball (like a tiny squirrel baby!), when he slept so soundly. The times he'd sprawl out with arms and legs hanging over the edge of the couch, bed or table. How he'd growl when carried a new toy, head held very high. He loved the toys with feathers and loved to play with ribbon. Most mornings, he would chew on the bottom of the shower curtain, as he waited for my bathroom break before going down stairs. He sneezed a lot; little tiny sneezes, in a series of 5 or 6. Choo, choo, choo, choo, choo.
I'm holding on to the memories of him sitting on my lap at the computer, or draped over my arm, or trying to climb up onto my lap while I was riding the trainer. All the little things he did, so many wonderful things, every day....

With the flow of tears, they feel like they are slipping away. I want to be distanced from the pain but remain so close to the memories. I can't believe I'll never get to kiss that M on his head, or the kitten soft fur behind his ears. I truly believe he was the most kissed cat ever. Even during his night time "loveys", I'd kiss him in my sleep (sometimes in effort to get him to stop with the over the top affection).

We tried to prepare ourselves, knowing the end was near. Yet nothing could prepare me for the enormous grief, the hole in my heart. He was a part of my every day for 13 years. Part of who I AM is because of his love and my love for him.

I am truly better for having known him but that does not ease the pain of his goodbye.

[i carry your heart with me(i carry it in]

BY E. E. CUMMINGS

i carry your heart with me(i carry it in

my heart)i am never without it(anywhere

i go you go,my dear;and whatever is done

by only me is your doing,my darling)

                                                      i fear

no fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

and it’s you are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life;which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

Battles

“Be kinder than necessary because everyone you meet is fighting some kind of battle” ― J.M. Barrie

There is sadness in the world every moment of every day. It doesn't take much looking around to see it. Fortunately, there is also great joy, gratitude and love to fill the rest of the space. Sometimes, despite how immense it is, it's harder to find. 

It's easy to become caught up in one's own trials and tribulations, the pain caused to us, justly or unjustly. It's also all too easy to shove it aside, write it off or place blame. It's hardest to recognize the pain, the suffering, the hurt and own it. To sit with it and allow it's experience as fully as we allow joy. Even harder still, is the shift of focus, to allow one's being to be comforted by the existence of discomfort. 

This may seem vague and verbose, but I have a point. One I felt compelled enough to return to the blog, to write about something other than the occasional run, trip or bike race.  I initially returned here to be reminded of the last time I felt this particular pain. I documented a few days of the roller coaster here (and many others in a personal journal). I'd forgotten about both but remembered this sensation. I remembered the permission we allowed ourselves to feel things, think things and say things that we didn't like and didn't always want to own up to, but needed to. I remembered how hard each day was, but how comforted I was that I had another day to do this hard stuff. I provided care and love that I never knew I was capable of, but it felt like second nature to me, yet all the while fumbling to find the right way. 

I am here again, and yet I am not. Uncertain and yet certain of what we all know to be true. Life is fragile and fleeting. Struggle is part of this process. The blessing of death is that what was once imperfect is made perfect and complete again. The curse is the future ceases and everything becomes a memory. My mind is too quick to fail and memories feel too fragile and opaque. 

I find I'm on this familiar roller coaster. The joys and highs and swooping lows. I am preparing myself for the end but trying to remain present, grateful and hopeful. I'm not alone in this battle. I'm not alone in this world. I'm not alone in this hurt. If I put my troubles aside, without turning my head, I can see great battles being fought, and some lost all around me. Each one worthy of it's own time, energy, respect and full experience. 

Not knowing where the end of this battle will lie or where the next begins, I'll try to focus on one step, one moment, one breath at a time. And respect the connection we share in our troubles, the strength we gather from one another and opportunities for joy and love that each struggle may bring. 

"Do not pray for an easy life. Pray for the strength to endure a difficult one." ~Bruce Lee