6
September
The Many Faces of Arthritis

Back2BackARTHRITIS

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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

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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?!

 

 

 

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