5
October
MA and RA and her Multi-Colored Slippers in the Topsy Turvy Land of Awes

We’re Off to See the Wizard

Carrie St. Louis "Glinda", Mary Ann Wilmarth, Tori Wilmarth at Wicked, The Musical

Carrie St. Louis “Glinda”, Mary Ann Wilmarth, Tori Wilmarth at Wicked, The Musical

Follow the yellow brick road,
Follow the yellow brick road,
Follow, follow, follow, follow, follow the yellow brick road.
Follow the rainbow over the stream,
Follow the fellow who follows a dream,
Follow, follow, follow, follow,
Follow the yellow brick road.
We’re off to see the Wizard,
The wonderful Wizard of Oz.
We hear he is a whiz of a Wiz if ever a Wiz there was.
If ever, oh ever a Wiz there was,
The Wizard of Oz is one becoz, becoz, becoz, becoz, becoz, becoz,
Becoz of the wonderful things he does.
We’re off to see the Wizard,
The wonderful Wizard of Oz.
We’re off to see the Wizard,
The wonderful Wizard of Oz.
We hear he is a whiz of a Wiz if ever a Wiz there was.
If ever, oh ever a Wiz there was,
The Wizard of Oz is one becoz, becoz, becoz, becoz, becoz, becoz,
Becoz of the wonderful things he does.
We’re off to see the Wizard,
The wonderful Wizard of Oz.

Songwriters: E Harburg / E.Y. Harburg / Harold Arlen
We’re Off to See the Wizard lyrics © Sony/ATV Music Publishing LLC (read more)

I’m off to see the Wizard, the Wonderful Wizard of OZ
I’m off to see the Wizard, the Wonderful Wizard of Awes

My mind feels like the good witch Glinda
My body feels like the bad witch –
And the house fell. Was it on the bad witch?
Or was it on me? Was the sky falling on me?
But my feet look good 🙂 And that is key, of course!
However, likely no more heels…if I want to have any comfort…

But Tieks keep me going – wonderful spirit lifting colors, long-lasting, supportive (for flats) – a splurge, but when you spend a lot of time resting right now like I do…those feet have got to look “maavelous”!!

WICKED, The Musical on Broadway

WICKED, The Musical on Broadway

The whole extravaganza is just Wicked ________________

(Keep in mind that I live outside Boston as well, therefore there is a double meaning with wicked Wicked!)

Go ahead and fill in the blanks. It can and will be different every day.

Whatever it is, it may be similar for most people, but just as dissimilar for those same individuals at any given moment on any day.

Wicked stiff, sore, frustrating, Wicked fatigued, foggy…Wicked fine?…

My 1st big tornado/twister came when I was a freshman in college…hit by a car as a pedestrian. Follow with surgery after surgery on my right knee & only one surgery on my left knee.

But it was a twister that I got under control or at least figured out how to manage.

I thought that this was my primary cross to bear in life. Oh how wrong I was, this was merely a warm-up for the rest of my life.

Life if what happens when you are making other plans.

  1. None of my 9-10-11-12 knee surgeries were part of my life plan or goals of skiing, being active and outdoors; working in healthcare – well, I could certainly still do that. I had enough experience and empathy to go around, that was certain.
  2. Then came the endometriosis. Or had it been there all along and I had ignored it for the most part? Just suck it up and power through it. I mean all athletes do that – Why not? Procedure. Laparoscopy. Another. And another. Surgery. Damn, it was getting worse.
  3. Before you knew it I found myself in the middle of infertility struggles. They said it was not the endometriosis and for some of it, I know for certain it was not. I said that I would not put my body through any more medical procedures. I had been through enough already. No IVF. I would adopt. We actually had twins to adopt in process that eventually fell through. Alas. Such heartache – you do not know that exact feeling until you have been there.
  4. Meanwhile, I was progressing with my career. Managing my own office of physical therapy and sports medicine. It is very difficult to balance these personal issues and maintain professionalism at the same time.
    • PT Interrupts Daily Practice to Become a Patient Herself. PT Bulletin: Volume 4, Pages 6-7 and 34, February 8, 1989.
    • Working Mother Dec-Jan 2002
  5. After attending a wonderful conference in Northern California sponsored by RESOLVE I decided to try IVF just once. After going through all that IVF entails, and it is not easy for most, I was so very fortunate to be pregnant with twins. After my daughters were born we did IVF again because we were moving back to the East Coast and we wanted to remain with Dr. Francis Polansky in Palo Alto, CA. Again, fortune was with me and I was blessed with 1 son, making a total of 3 children under the age of 3, which was such a blessing and plenty to handle.
  6. Things went by in a blur until my twin girls were in kindergarten and that was when all my kidney issues started to be treated. The back pain that I had been experiencing and the fatigue apparently were not merely from having 3 young children. There were more issues and diagnoses with my kidneys, kidney stones, diverticulum, and more.
  7. I barely recovered from that and it seemed that I heard that I needed that dreaded hysterectomy we had been putting off. Gosh, I am getting tired writing this. I don’t know how I managed to live it and work as well as raise my children?! Fatigue is the first thing that comes to mind.
  8. Right on the heels of that would be my right total knee replacement due to all the surgeries secondary to the MVA my freshman year in college. I had been told 5 years earlier that I needed it. Absolutely not then I said. So I played tennis until I had to limp off the court mid match while playing number 1 A doubles. I let my teammate and team down, myself, my family. I went onto crutches for months until I could fit the TKR surgery into the schedule. I knew this day would come. I just never really, truly pictured it! I was only 40-something after all – young in TKR terms!

Before the most recent tornado came with the GI problems, I had the 7 above-mentioned mini-twisters, cyclones maybe? I am not from the land of this type of weather, though we have had a few tornadoes in New England in the recent years, nothing compared to the Midwest or South though. The house did land 4+ years ago …

OZ or AWES

I think of our OZ as navigating the diseases along with the healthcare system. If only it were a place to go… Becoz of the wonderful things he does.
We’re off to see the Wizard,
The wonderful Wizard of Oz.

Even as a knowledgeable healthcare professional it is quite difficult to get appropriate care at the proper time. I have to be the primary care coordinator and self-advocate for myself. I can do this if I have time and if I am feeling well and if… However, I have health insurance and I am the patient in this case and prefer to be able to relax a bit when I am not feeling well. This is not really possible because I have to be on my toes at all times to ensure that nothing is falling through the cracks, my medicines do not have contraindications, or overlapping treatments that are not necessary. I have more polypharmacy than I want and my goal is to wean off medications, yet each time I go to see one of my many healthcare providers, they are often quick to suggest another medication. I have to keep my doctors informed of what is happening with each of my systems since all are involved with my autoimmune diseases. Even though we have all these great electronic medical records (EMR) most are not accurate, are not corrected or amended even if you ask for them to be, and are not read by other providers for the most part – I am generalizing here.

There are some physicians who are fabulous!

I worry about all of my patients that I have had that cannot speak for themselves and who do not know the system, for those who cannot advocate for themselves and may not have a good advocate. This happens with the population merely as they age and cannot function as well as they did previously. It’s a jungle and we all need a Wizard of Oz to help us through it!

The other Land of Awes pertains to how I and others are perceived in general. Either we are often looked upon with disdain like the guards at the gate as if to say, “You do not belong here.” These are like the thoughts or comments we hear that we do not look ill, therefore we must not be sick at all: invisible illness. Or, you can get the other extreme where people give you the “Awes”, that kind of pathetic, sympathetic look where suddenly your IQ just dropped 100 points because you are ill. One can apparently not think if you are ill. Granted, there is the brain fog at times, and pain can certainly make concentrating difficult. But do not immediately judge me or us that we are not as intelligent as we were previously. I would argue that because we are now have the privilege of having a chronic illness, we are forced, in a way to think on a deeper level and feel that way too – more often. And because we are often forced to arrange our lives and are not able to do our first choice passions, activities or sports necessarily, then we may read more, think more, get into deeper conversations and so on. Therefore, look at us and if anything, add 50 points to our IQs!

Really everyone in OZ is looking for the same thing –

self-acceptance, health, happiness, and peace.

MA and those with RA and all of the other 100+

rheumatologic diseases and chronic illnesses are no different! 

The guards in the castle with the fuzzy hats represent the insurance company gatekeepers perhaps? What do you think? That could be up for grabs depending on the individual. For some it could be their primary care physician unfortunately and sadly for even others it could be their rheumatologist (if they do not have MDs that meet their needs). Bottom line – get away from the guards! You need the freedom to have adequate individual evidence-based care for your specific needs on any given day or week or month or year.

The monkeys in the movie version of The Wizard of Oz always scared the crap out of me as a child! I had to leave the room – every time. These I equate to all the symptoms and side effects, pulling on me and you, dragging us down, making each and every breath and step and grip more difficult. Make them go away. Now, they do not necessarily scare me (although I still am not fond of them), although there are moments on bad days… And you have no choice to leave the room – there is no running or escaping. They are there with you; the monkeys are on your back, so-to-speak, day and night, night and day, 24-7/365.

I was fortunate to go to see “Wicked, The Musical” on Broadway this summer with my daughter Tori. We were bringing her twin sister Lauren her belongings as she had moved from couches to her apartment with her work at Animal Medical Center in NYC for a year long post-DVM internship. “Wicked” is one of my all-time favorite broadway shows and this was my 4th viewing between Boston and NYC. And we were particularly excited to see Carrie St. Louis as Glinda. She had gone to school with both Tori and Lauren and had been fabulous in all the productions prior to college –  no surprise there! Carrie was superb as Glinda!!

When it came time for the monkeys I looked up and there they were, above my head! Not all of them, but some. I was living out my worst nightmare as a child. But curiously, it was now part of my favorite musical – 180 degree difference. How things can change if you do not let your fears rule you. Face them, or in this case, have them hang above you at the Gershwin Theatre:-) Or be so focused on your goals and life that they melt away, just like the wicked witch…melting…

And the crystal ball: now don’t we all wish we had one of those, or do we? Do you want to know what is going to happen or do you want to live the very best that you can every day regardless of what is going to happen tomorrow? Great things are happening with research and medications every day. I am personally taking it one day at a time now and trying my best to be mindful of everything in the moment. Now that’s a tall order for a long time reforming Type A person, but I am a work in progress (as we all are) and it is possible to be productive and mindful and take most things a day at a time. I did say most things! I made some reservations (literally with plane flights) with that “one day at a time” rationale and that does not help the bank account at all! Trust me! Thus, you need to know where to apply it.

My home looks like a gym and spa now, plus office and doggie day care, along with the normal home items fit in between, & the fact that I am moving. My life revolves around MD appointments, exercises, therapy, and self-help techniques necessary to even function. And if it does not, then I do not function. Y’all know the routine, right?! People often say, “You are so lucky to have all this or to be able to spend all the time on exercise…” “It’s like your own gym and spa!” The part they leave off is that if I don’t do those things, then I cannot walk, write, use my arms, talk, eat, see, and more. I cannot even get out of bed without performing my exercises and having my medications. Oh what I would give to just jump out of bed again…

For years I thought, I cannot wait to have more time at home when it’s empty nest time. I obviously did not qualify that thought enough…I should have mentioned, “and be healthy.” It’s the details that make all the difference! Do NOT neglect the details – The Devil is in the Details!

I was at the opthamologist’s office today because the dryness in my eyes is getting significantly worse even with all the drops and warm compresses and rests from use and the computer, etc, etc. When I had the green and yellow drops in my eyes it looked like I was in the Land of OZ. I felt like Dorothy for those few moments. If only I could click my heels together and make my wishes come true. I would be very careful because my Achilles are very sore, but then I would gently tap 3 times and make my wish.

I would wish that all of us with RA and any of the rheumatological diseases and chronic illnesses could return to our own Land of Awes with the daily mantra being

“Awe, I feel great again today!”

Because I am “Defying Gravity!”

Defying Gravity...when I swim! Even when I walk. One step at a time...One day at a time :-) <3

Defying Gravity…when I swim! Even when I walk. One step at a time…One day at a time 🙂 <3

 

Cheers,

The MultiColored Slippers in the Land of Awes

The Multi-Colored Slippers in the Land of Awes

DocMAW
@Back2BackPT

 

ADDENDUM: Dr. Lauren Wilmarth DVM had an amazing day off today & capped it off by seeing WICKED The Musical with Carrie St. Louis, the BEST Glinda!! Wish I were there, but am in spirit 🙂

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