17
February
Joint Replacement Roundtable
Thursday, Feb. 23

Looking forward to the Boston-area Joint Replacement Roundtable on February 23rd! Thanks to Creaky Joints, Arthritis Power, and Rand Corporation for hosting.

You can also contact Dr. Mary Ann Wilmarth to discuss further or if you have any questions. It’s a great opportunity to talk about your experiences. And it will help patients going forward—a win-win!

1
November
Health Activist Writer’s Month Challenge – #HAWMC by DocMAW

 

WEGO Health

@wegohealth

Health Activist Writer’s Month Challenge

#HAWMC by DocMAW

 

The Health Activist Writer’s Month Challenge Starts November 1st – That woulhttp://back2backpt.com/wp-admin/media-upload.php?post_id=984&type=image&TB_iframe=1d be HAWMC. Yes, another acronym that I will learn. Thus far, I have said WOMAC more often than the correct acronym, #HAWMC. This may give you some insight into where I am coming from though. The WOMAC* is a self-administered instrument or questionnaire for patients regarding knee and hip osteoarthritis (OA). Since I have spent over 30 years as a physical therapist working with people who have such arthritis and have had this OA myself, it comes naturally to mind & off my lips. However, after a day or so HAWMC will be second nature for me, just as rheumatoid arthritis (RA), inflammatory arthritis, Sjogren’s Syndrome, migraines, collagenous colitis, and all the other diagnoses are as well.

 

I spent my entire professional life with the chronic pain of OA & several other issues as well. My focus was always on my clients, my children, my family, my students, & if there was anything leftover, maybe me. I did not always take optimal care of myself first because I was too busy taking care of everyone else. You can only do that for so long. I had a plan to change gears once my youngest finished college, but life got in the way or rather, my health had other plans. A number of years ago, after feeling terrible for some time, my body had enough. That’s when the autoimmune diseases started for me. It has been a difficult road with more questions than answers much of the time.

**You can’t pour from an empty cup. Take care of yourself first.

 

**The mind is not a vessel to be filled but a fire to be kindled. Plutarch

 

 

The "Not-so-Highs"

The “Not-so-Highs” during special Infusions. I think I was smiling… because I felt like a ‘fashionista’!!

Since I am a healthcare provider, I know what questions to ask & how to advocate for myself, although it is always difficult when you are not feeling well.

**Try to bring someone with you at your appointments

for support & reinforcement regarding what was communicated.

 

My plans had been to focus on my private practice Back2BackPT, treating clients, writing books, &doing presentations. However, because my hands, the tools of my trade, were significantly effected, I decided that my focus would be on advocating for all patients with arthritis, chronic illnesses, chronic pain, & those in need of an advocate.

**As both a healthcare provider & a patient with chronic illnesses,

I would be a perfect candidate as an advocate

who could segue the chasm that often exists between the two

with inadequate communication at best.

 

**You can read more about my condition at www.Back2BackPT.com/blog/

 

 

 

I have always been very active in a variety of organizations and causes. When my children were growing up that meant their schools, sports clubs, especially tennis, Girl Scouts, Boy Scouts, homeless shelters, food & clothing drives, animal shelters, and more.

 

I have been & remain involved with the following:

 

American Physical Therapy Association (APTA)

I am a member of their Media Corps.

@APTA

@APTAtweets

 

Since my new chronic life I have been more specifically focused with the following:

Crohn’s & Colitis Foundation of America (CCFA)

@CCFA

The most active 'high' literally & figuratively to date! Paying for it with extra ice etc, but worth it:-)

The most active ‘high’ literally & figuratively to date! Paying for it with extra ice etc, but worth it:-)

Arthritis Foundation

@ArthritisFdn

Creaky Joints

@CreakyJoints

#Joint Decisions

 

Arthritis National Research Foundation

@Cure Arthritis

American College of Rheumatology

@ACRheum

#worldarthritisday2016

#wadstory

EmpowHER

@EmpowHER

…& more

& counting…

 

I found out about HAWMC last minute, which seems to be the way for me these days.

Welcome to Day 1 of #HAWMC

Welcome to Day 1 of #HAWMC

However, I prefer to see it as

“How fortunate that I have the opportunity to participate!”

 

I am not one to pass up great opportunities, even when I am the hare of

The Tortoise & The Hare (one of my upcoming Blogs)

especially since being part of the chronic life & for me the chronically late.

Do you know what I mean?

 

I went from being pretty fast even with chronic OA (I knew how to work around it)

to beeeiiiinnnggg ooohhh ssoooo ssslllooowwww

It is frustrating at best for all involved – Right?!

 

I was planning to start new renewed writing & blogging on November 1st

& the Law of Attraction brought me to HAWMC. Thus, it is meant to be.

**I look forward to getting to know y’all

&

vice versa over the next month and longer.

 

I do have a significant amount of trouble with both hands right now. I was at the doctor’s on Halloween where I had injections in each thumb. In addition, I do need total joint replacements. However, for now I’ll just ‘put it on the list’! We start from the bottom up and my left knee has first dibsJ But what that means is that I will use:

Blog – Twitter – Facebook – Instagram

http://back2backpt.com/blog/

https://twitter.com/Back2backPT

https://www.facebook.com/Back2BackPT/

https://www.instagram.com/docmaw_co/

 

To communicate for the 30 days since my hands are often in charge of what and when I can do things, even with dictating.

**Onward to a FABULOUS 30-days HAWMC

 

Health Activist Writer’s Month Challenge

 

Cheers, 

DocMAW / Mary Ann

 

Dr. Mary Ann Wilmarth

PT, DPT, MS, OCS, MTC, Cert.MDT, CIDN, CEAS

mwilmarth@comcast.net

  mwilmarth@Back2backPT.com

www.Back2BackPT.com

  Back2BackARTHRITIS

Optimizing function via body balance & exercise.

 

 ******

 

*WOMAC® 3.1 Index

Knee and Hip Osteoarthritis Index

Since its development in 1982, the WOMAC® Index has undergone several revisions and modifications. The Index is self-administered and assesses the three dimensions of pain, disability and joint stiffness in knee and hip osteoarthritis using a battery of 24 questions. The latest version of the instrument (WOMAC® 3.1) is available in over 100 alternate language forms, and in many languages is available in 5-point Likert, 100mm Visual Analogue and 11-box Numerical Rating Scale formats. The WOMAC® 3.1 has been linguistically validated and is widely used in the evaluation of knee and hip osteoarthritis. It is a valid, reliable and responsive measure of outcome, and has been used in diverse clinical and interventional environments. The index has been subject to numerous validation studies, which have addressed specific clinimetric issues.

http://www.womac.com/womac/index.htm

 

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 🙂

img_2108

3
October
Tips for Managing AS: Ankylosing Spondylitis

screen-shot-2016-10-02-at-8-23-17-pmAnkylosing spondylitis, or AS, is a form of arthritis that affects the spine, although other joints can also be involved. Because AS causes inflammation of the vertebrae in the spine, people with AS can experience severe, chronic pain. AS can also cause inflammation and pain in other areas of the body including shoulders, hips, ribs, hands, and feet.

I recently compiled several tips for managing AS, which appeared in Everyday Health. I suggested that those with AS should work with a physical therapist to learn exercises aimed to strengthen the back and neck. Many AS sufferers also benefit from maintaining good ergonomics and posture. Check out the Everyday Health article to see the complete list of tips for managing AS.

 

You can also check out the following websites:

*******

www.moveforwardpt.com

Ankylosing Spondylitis:  http://bit.ly/2dqkwXG

*****

http://www.arthritis.org

http://www.arthritis.org/about-arthritis/types/ankylosing-spondylitis/

*****

https://creakyjoints.org

https://creakyjoints.org/education/ankylosing-spondylitis/

Cheers,

DocMAW
@Back2BackPT

 

 

2
October
Building a Better Knee – My Comments in Men’s Journal

Exercise should keep us healthy, but sometimes overuse and repetition can actually cause injury. For instance, climbing stairs is a great way to build your core muscle strength, but it can also put stress on your knees. Making sure to progress gradually and ensuring that your gluteals and hip muscles are strong enough, can help avoid injury to your knees.

I recently discussed knee overuse and injury for this Men’s Journal article, “How to Build a Better Knee.” While the article points out that evolution may not have provided us with the best knee design, the article offers some tips for strengthening to hopefully “get another couple of decades from your knees.”

Bending knee exercise

 

Cheers,

DocMAW
@Back2BackPT

 

1
October
Dealing with Back Pain – My Tip in Woman’s Day

Women on Yoga BallBack pain is a common complaint among Americans; in fact, some estimates say that back pain affects 80% of people at some point in their lives.

I recently spoke to Woman’s Day about simple ways that people can ease backaches, with the goal of alleviating back pain for good. My tip involves a handy item you probably already have in your home! Check out this Woman’s Day article for “8 Ways to Banish Back Pain Right Now.”

 

 

 

 

Cheers,

DocMAW
@Back2BackPT

 

28
September
Happy Psoriatic Awareness Day

old-people-545232_640Who would imagine that there are more than 100 different types of rheumatic diseases? Having 1 is more than enough to keep a person busy for life with  chronic illness. And many people will have more than one. I am personally dealing with RA, OA, Sjogren’s Syndrome, and others, my et. al. if you will.

Let me have Simple Tasks summarize September & “Hundreds of Diseases, One Voice” for you as they do so well here:

Rheumatic Disease Awareness Month 2016

“September 2016 marks the first annual Rheumatic Disease Awareness Month (RDAM). RDAM was created by the American College of Rheumatology (ACR) and its public awareness campaign, Simple Tasks, to raise awareness about diseases like lupus, gout, rheumatoid arthritis and the 100+ lesser known rheumatic diseases.

The theme for RDAM 2016 is, “Hundreds of Diseases. One Voice.” Speaking as one voice, we can improve the public’s understanding of rheumatic diseases and advance the health and well-being of millions of Americans living with rheumatic diseases.”

Now, Celgene and the National Psoriasis Foundation declared September 28, 2016 as the inaugural Psoriatic Arthritis Awareness Day. It is wonderful that so much awareness is coming for all of the rheumatic diseases.

KNOWLEDGE is POWER!

How to Exercise With Psoriatic Arthritis: Expert Advice to Help You Stay Limber and Reduce Pain is a nice article that I was interviewed for this past summer, which describes some exercises that you can do if you have Psoriatic Arthritis. It was first published August 22, 2016 in LifeScript and penned by Dana Gottesman.

Following is a link to the Arthritis Foundation Tools Section where there is much helpful information regarding Psoriatic Arthritis. Psoriatic Arthritis & You: A Special Publication of Arthritis Today by the Arthritis Foundation is one that I was involved with personally.

Like I do, peruse the vast amount of information that is out there on your particular disease. If you have any questions of any type, please feel free to ask me. We need to be open and share to get through all this. And Happy Psoriatic Arthritis Awareness Day September 28, 2016!

Cheers,

DocMAW
@Back2BackPT

6
September
The Many Faces of Arthritis

Back2BackARTHRITIS

IMG_9425

The Many Faces of Arthritis

My invisible illness is Back2BackArthritis – OA/RA, Sjogren’s Syndrome & more actually, but that is enough to mention for my elevator speech. Yes, with a chronic illness you need to come up with an elevator speech, just as you do with your profession. My story is that I’m a Doctor of Physical Therapy, former athlete, empty nester of 3,  and I seriously want to get a mini-house & take a gap-year of sorts! My happy place is the beach…by the ocean with my feet in the sand and the wind in my hair or me entirely in the water… It used to be skiing in the winter when I was younger and without knee issues & OA, & sailing in the summer, until I discovered windsurfing. But one’s aspirations and need for peace and happiness get modified with a chronic illness, even if it is one that is deemed invisible.

The BEACH – my HAPPY PLACE – is where I would like to spend

most of my time during my year of R&R&R

Rest & Recuperation & Regeneration & Repair &

Recovery & Relaxation & Rejuvenation & Renewal &

Recreation & Repositioning & Re-inventing & Visit/Re-visit &

So on & So forth: as few or as many R’s as necessary!

Pain is nothing compared to what it feels like to quit. Author Unknown

Just like skiing, at first, windsurfing was…PAINFUL!! Not unlike OA, RA, Sjogren’s, all these autoimmune diseases and chronic pain problems. As their name implies, they are 1 – chronic: they do not go away; & 2 – painful: they hurt – there is no getting around that. However, there is a way, in fact there are countless ways to manage this thing called ‘chronic pain’. Let me count the ways…

But before I do, you need to know my story, where I came from– why I am writing about this – what gives me the right – what do I know about it – what is my herstory – what is my motive – anyone can write a Blog on the internet these days, true – what makes mine, Back2BackARTHRITIS, different, unique, worthy of a read.

I remember my very first day of skiing very vividly. I was 5 years old when I went out to a hill. OK, it was a bump in Groton Massachusetts. In those days –yes, the olden days y’all- I’m old & this disease makes my body feel older than my mind quite often, but I won’t let it get me down! I digress (Note: I can do that often, but will do my best to keep it at bay or at least save things for another Blog) In those days, the equipment was not the fancy stuff that we use today. It took what seemed like days to tie the double layers of laces on my boots, which of course felt too tight, and my feet were cold and then these binding things that looked like a slingshot, and I was sure that I would be shot into a tree or the sky. So my Dad, bless his heart, brought me over to the base of the bump. I was the youngest. The instructor spent what seemed like the entire lesson having us learn how to twist and torque those long, long skis so that our feet were pointing in opposite directions. We were not in ballet class even though he was trying to get us all into fifth position, but with skis!

Correct me if I am wrong here, but wasn’t the point to keep the skis together and pointed in the same direction? This guy was totally mixed up if you ask me, but then no one seemed to care what the 5-year-old with the frozen tears on her cheek was saying. Of course I fell down. “Oh good,” he said, “Now you can learn to get up.” This gets better and better I’m thinking. I cannot even recall if we did any skiing on that first day. Those memories were too overwhelming. However, it DID get better, albeit slowly. And the cold weather and the time-consuming equipment and the frozen eyelashes and the early mornings – nothing could keep me from my LOVE of skiing. Yes, I did say LOVE!! The crisp air, the wind in my face, my hair flying (sometimes – before helmets), making fresh tracks in the snow (if you went on the sides or off the groomed trail (I lived in New England after all), seeing how many runs I could get in each day (no time for meals). My passion grew and grew, and I lived for the weekends and started to ski on another little hill and took up racing. Who would have guessed if you saw me that first day in Groton? Not unlike our chronic illnesses at first, oh so very difficult, but at some point along the way, sooner, but often later – we learn to manage our pain and symptoms & life becomes our own, if not even pleasant at times. I know, don’t push it too much yet – don’t worry. Remember:

Pain is nothing compared to what it feels like to quit. Author Unknown

FullSizeRender FullSizeRender

My experience with windsurfing was quite similar to that of skiing, except that I started when I was 18, not 5. My family had gone on this great vacation on Nantucket Island before I went off to college (where I planned to ski by the way). I saw people windsurfing and had to try it. I took a lesson. I do not think my arms had such a good workout in a long time: stand up, fall down, in the water, get up, pull up the sail, try to sail, fall down into the water, repeat over and over and over. I think that my parents and brother were on the shore getting a great laugh out of the whole thing. Their stomach muscles were likely as sore as the rest of my muscles that night! But with time and persistence and moving to California, things progressed, albeit slowly. The worst part was the beginning. Lugging that heavy sail up every time you fall is terrible and is a killer on your back, good body mechanics or not. They don’t tell you at the beginning how much more simple it is when you can do the water starts. Oh my gosh, it’s like night and day and the rush and the wind in your face and hair flying (when it’s not wet) and skimming over the water that glistens on the horizon. Oh, it does not get better than this! It’s like combining the best of skiing, but with my love of water and the ocean and sun and not needing to put on all that equipment (although there is the wetsuit thing). My true passion had been found. When I could windsurf on SF Bay and the Hood River, although not as good as those amazing people there, I felt I had made it, I was in my happy, happy place 🙂

What is your happy place? Then? And now?

Pre- & Post-ChronicLife?

Are they the same?

Does it matter?

Can it be the same, yet you do different things?

At your Happy Place 

What is my more involved narrative? Everyone has a story, and it is important, no quite necessary that you be able to share your story with others, with someone, in order to feel more connected in general and to those sharing a similar story, maybe validated with your illness or issue(s), and possibly feel less isolated. In addition, you can become part of a group or community that truly understands what you go through on a daily basis, whether that is stiffness, pain, severe fatigue, weakness, numbness, decreased balance, incoordination, mental fog, lack of focus, or just the fact that you have a diagnosis that may or may not result in symptoms at some later date for you or maybe you are worried about your future family.

I have worked as a physical therapist for over 30 years. I knew that I wanted MD, PT, DDS, or something along those lines in the health fields. I chose to go to an undergraduate liberal arts college where I could ski, my passion. But that all changed my freshman year when I was hit by a car while crossing in the crosswalk when returning from chem lab. That was the beginning of the knee problems, surgeries, OA, physical therapy, total knee replacement, and ultimately my choice in a profession. My ski racing ended. Eventually I was able to take up swimming and joined the swim team doing the 500yard race. And much later I even started bike racing and sprint triathlons. I learned to manage and live with OA even though there was daily pain.

It has taken me just about a year, 1 year, to get this onto my website. I find that quite unbelievable. For a type A person who slowly became the person, the family, that was always running late. It became the joke – when would we arrive? However, it all makes sense now. I was not just your average working mother of 3 trying to do it all, to be everything for everybody. I was fighting against my body every step of the way, and I was not listening to what my body was trying to tell me. It’s just fatigue. We are supposed to get by on little sleep in this country, right?! I can do it. I will make up for it at some point. How many of you have had those thoughts? Even though I knew better, my children and family had needs, as did my patients and students, came first. There were only so many hours in the day…

I truly started to realize that it may be more than OA when I had difficulty making hand splints for my patients. I could not cut the pieces of material with the scissors without significant pain. I did not have the control that I previously had..Therefore I started to steer away from doing those types of treatments. I could still work with the people having dysfunction with their hands; for the most part, however, if they required a splint, I could not make that myself. I asked one of my staff members if she could make it instead. But at that point I had not said anything more regarding my health, which seemed to be a mounting pile of issues.

The other red flag was fatigue. But that is a tough one now isn’t it? What working mother does not have fatigue, now really?! That becomes a normal part of life. However, as a nation and health providers there is finally evidence indicating that ‘sleep’ is important – Hallelujah!!!! The body is meant to rest a certain amount of time and it is then that it recovers, rebuilds and gets ready for the next day…but more on that in a later Blog.

I was working 4 jobs. Now I know that sounds like a lot and it was and I was not super keen on it, but needed to do so in order to help to make ends meet with 3 in college, even with excellent scholarships. Yes, of course there is a story attached – when isn’t there one? Let’s just say that I have more Blogs ready to go (now that I have actually started to write) than you can imagine. It was taking that first step that was the most difficult. As far as my 4 jobs were concerned, I had a full-time job, an on-line teaching job, an online consulting job, my private practice, and professional association volunteer work for starters.

Was I quitting? Was I giving up? Was I failing? Or was I finally listening to my body? Sure, there have been times when I have not wanted to do everything because I was in pain. But I just chalked it up to OA or fatigue or work or life or motherhood or a combination of those things. My time was not my own at work. Add some stress in there and our high tech world with almost 24/7 availability and sure, one can have aches and pains, who was I to complain?! I slowly weaned down letting 1 job go at time, very sadly. When I have more autonomy, I am better able to coordinate and manage my time and balance it all out as needed.

However, the fatigue became more and more overwhelming. All that I could do was work and recover from work. And even then I was not recovering enough. The thought of doing anything fun or athletic, which was my previous go-to for fun, was out of the question. Any social event sounded like torture because I knew that I could not handle it, much as I wanted to go. I was tired of giving excuses, and I know that my friends were tiring of hearing them. I could not understand what was going on, why should they?

I needed more flexibility. It seemed progressively that I was more involved than many of my clients. I could work with them, but it completely wiped me out. I could not keep up like this. I had to face reality. It was time to call it as they say in the OR. Time of death with work as I knew it…0800hours.

I have spent the past year plus in and out of hospitals, clinics, doctor’s offices, blood labs, infusion centers, had MRIs, CT scans, x-rays, testing for breathing, allergies, vestibular dysfunction, and immunology deficiency. I have tried different biologics, had adverse reactions to other medications, am currently on monthly infusions, plus a full Vera Bradley bag full of other medications. I should have stock in CVS, my favorite store these daysJ Y’all know what I mean, right?! When you feel like crap, so when you pick up your medication, you shop for a few key items, dinner and breakfast and maybe a few drinks, but they have to be gluten and lactose free, so it can be a challenge. I used to just be another customer, but now I am the one who gets a zillion prescriptions and also buys stuff with it AND uses coupons. I’ve become one of those people, all because I have Back2BackARTHRITIS.

 

It’s taken me almost a year to get back to writing this Blog. I have not felt well. There has also been the question of exactly what was going on with me. I did not want to write as an imposter. However, we are all diagnoses in process. Things are changing continuously. I have Sjogren’s Syndrome. I am being treated for Rheumatoid Arthritis and have all the signs and symptoms. When I was in school with the medical students we were taught, if it walks like a duck and looks like a duck, then it is likely a duck. I have other symptoms and may have other things going on as well, but for simplicity’s sake for now, we’ll call it OA, RA, Sjogren’s – the top 3.

Yes, my life has changed significantly. And yes, there has been a lot of pain even as I type these words now. I have never ever thought of quitting. I have thought, “ How the heck am I going to make this work?” on several occasions. However, I continue to get up every day and do the best that I can on that day, even if my best is not very much as it was today. Today was not a good pain day, it was a high fatigue day, but I made it through, and hopefully tomorrow will be better. All that I can do is my best on every single day!

Pain is nothing compared to what it feels like to quit. Author Unknown

 

My plan and goal with this Back2BackARTHRITIS Blog is to talk about various aspects related to arthritis and life with arthritis coming from the perspective of a Doctor of Physical Therapy who has practiced for over 30 years. In addition, my 2nd arthritis arrived just about when I was planning my long awaited empty-nest after raising 3 great children. I will also be chatting about what it’s like to reinvent yourself when –

Life is what happens to us while we are making other plans.

We need to keep the good, but always be moving forwards with our lives.

 

Life is a balance of hanging on and letting go.

 

So, let’s have some fun, share some stories, maybe answer some questions, definitely create more questions, and go through this thing called life together. We all have an invisible disease of some type, an autoimmune disease, maybe arthritis, maybe something else. Or possibly you are caring for someone or living with someone with such a disease. It’s a marathon and we are all in it for the long haul, so let’s make the most of it!

Cheerio,

 

DocMAW_Co @Instagram

DrMaryAnnWilmarth@Back2BackPT @Twitter

www.Back2BackPT.com

Back2BackARTHRITIS

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What is your happy place?

Then? And now?

Pre- & Post-ChronicLife?

Are they the same?

Does it matter?

Can it be the same, yet you do different things?

At your Happy Place 🙂

 

Post Your answers to any of the above-mentioned

Regarding your HAPPY PLACE

On any or ALL of the following:

www.Back2BackPT.com

DocMAW_Co @Instagram

DrMaryAnnWilmarth@Back2BackPT @Twitter

My 1-minute This is Me Speech 

My invisible illness is Back2BackArthritis – OA/RA, Sjogren’s Syndrome & additional autoimmune diseases. My story is that I’m a Doctor of Physical Therapy, former athlete, empty nester of 3 awesome young adults (yes I’m biased!), and I seriously want to get a mini-house & take a gap-year of sorts! My happy place is the beach!…by the ocean with my feet in the sand and the wind in my hair or me entirely in the water… It used to be skiing in the winter when I was younger and without knee issues & OA, & sailing in the summer, until I discovered windsurfing. And I always try to ‘keep calm & look on the bright side of life’ because…it sure beats the alternative and if it worked for Monty Python, then by George, it must be good, right?!

 

 

 

27
May
The Best Something of Everything

kids_backI spent over 30 years being Everything to Everybody – Except ME. Now it is my turn! This does not mean that I will not still be there to assist others, I will be. However, I need to take care of myself first, finally. I had been meaning to for years. You know how it goes, and then one thing or person after another needs you or something and before you know it months and years go by. I got to the point where the mind was willing, but the body was no longer cooperating. I knew that something had to change, but what would the change be, that was the question.

My profession is one of taking care of people of giving of oneself. Some might argue that it consists of pain and torture as the PT suggestsJ It may be a little bit of both. It is rehabilitation, which means doing what it takes to be able to get a person functioning to the best of their abilities after an injury or illness. When I first started working I would worry about patients over the weekend if they were inpatients and really involved. I had to learn to let go so that I could have a break and come back refreshed on Monday morning. I never did lose that level of concern for my patients though.

I had the same level of investment with all of the students that I taught over the years as well. I challenged them to think and work outside their comfort zones. For many that meant that they were not completely happy in the moment, but they understood once the course was complete. Some did not. However, I have had many former students contact me months or even years later to tell me that they now understand why we did what we did in the class and that it has helped them in their work and life going forward. Those comments mean more to me than anything. The fact that these people understood what we were doing and connected the dots and ultimately had the grace to make the effort to contact me and thank me speaks volumes to their character as human beings. It does not matter to me when or how one of my students comes to understand something, but rather the fact that it happened at all. These are the moments that make all those late nights and early mornings on the computer and with the books worthwhile!

Some of my students, and others, who have met my children have asked, “How have you raised three such great children?” I have heard this not once, but repeatedly over the years. One, I am blessed. Two, I give unconditionally. Three, we all work hard, we have goals, we respect each other, and I don’t put up with any crap. How’s that for putting it succinctly? I am friends with my children, but before that I am their parent. I think that too many people these days try to be only friends with their children and it does not work that way. You have to be their parent. Each child is looking for that and they need it first and foremost.

I offer the same respect and friendship to those that I work with; however, not all reciprocate. If you disrespect me, tell non-truths, or do other things that go against the grain as noted above, it becomes more and more difficult for me to give unconditionally….

I found myself in a position where my health was not optimal. I tried to work things so that I could have flexibility in order to continue on, but this did not come to be. I enjoy working with patients or clients very much and find it difficult not to give 100%+, therefore when I was working, I was working. Normally, you would want to take breaks when you work. That is a good thing to do both physically and mentally. However, I had such a difficult time getting myself going in the morning that if I stopped during the day for a break, I might not have been able to continue on. That meant that I had to keep working until the end of the day at which point I literally collapsed. I would sit down at my computer and proceed to fall asleep on the keyboard. Not just a light sleep, but the deepest sleep you can imagine. I was absolutely exhausted. And I was not even done with my work for the day. I still had hours of computer work to go. And then I got little sleep and had to wake up and do it all over again with a body that felt less than optimal.

We have to take care of ourselves before we can take care of others.

I am finally getting a chance to take care of me. My youngest is through 4 years of college, so I feel that my job is done. I have worked every possible physical therapy job and then some in order to be with my children and still bring in an income to adequately support three children through college and some of grad school. I also facilitated their ability to receive scholarships in high school, college, and graduate school to make it possible for us to live and eatJ For most of their high school and college years I was working 3-4 jobs with teaching, editing, and my main PT work. I would be on the computer every time I had a free moment and then some. In one sense I truly hated it because it made me look like I was anti-social, but I was really just trying to make ends meet.

We may still need to make ends meet, but if I do not have my health, then it is for naught. So, it’s time to take some deep breaths, if I can – working on that. Get myself feeling better – my best friends seem to be all my doctors these days. My goal is to have a few weeks without any MD appointments. And get out in the fresh air to do some walking – it’s going to be one step at a time to get back on track. It has been a long 30 years and an even longer winter surviving the worst snow on record. So, it’s time to get some sunshine! I want to be Everything to ME before I can be The Best Something to Others. And if I do that then you will be getting The Best Something of Everything & it will work out for Everyone 🙂 .

Don’t shortchange yourself while thinking of others.

Nova_Scotia

You cannot water the flowers if the pot is not full.

HAPPY MEMORIAL DAY!

Enjoy your weekend and the start of your summer!!

Dr. Mary Ann