We’re Together In This: 2021

Blue square with gold sunbursts, squiggles, dashes, and lines decorating the lower and right sides. The title in the upper left corner in white font.

On Monday, January 4th, my husband and I will get up early to drive the three and a half hours to Ann Arbor for my first appointment with a cardiologist who specializes in Fibromuscular Dysplasia (FMD). At this point, we know that I have the telltale beading in both of my carotid arteries, but it can be found in any artery of the body. I had an ultrasound of my renal arteries and there was no indication of it being present there. Seeing this doctor, especially since he’s come highly recommended by several FMD patients who live in Michigan has been reassuring.

As the day looms closer, I’m getting anxious. How will it go? Will he take me seriously? Will the trip be worth it? Will he find out even more scariness? Truly, I would like to stay home, but I know I have to follow through or the unanswered questions will hang heavy over my head. This is much like my feelings about the new year. I’ve been hanging on, reassuring myself that it has to get better. Hanging on, knowing that I can only do this for so much longer before I JUST CAN’T anymore. I know I’m not alone in this. I will be using January 2021 prompts from A Chronic Voice: Beginning, Symbolizing, Enduring and Revealing to capture my hopes and angst for this coming new year. 

Blue square decorated with gold sunbursts, squiggles, dashes, and lines on the lower and right sides. In the upper left side, the quote in white font.

Beginning

Last January started out like most for me. Yes, I was struggling with the transition from working full-time to retirement while handling the daily ups and downs of living with chronic illness, but, like pretty much everyone else in the world, I wasn’t expecting what was coming in just a few months time.

For me and my family, it was Friday, March 13th. That was the day that our state’s governor closed schools and ordered that we stay home. I’ve been home pretty much ever since. I’ll be honest, I really haven’t felt too inconvenienced or closed in until this November. I know, I’m really “fortunate”- chalk it up to the benefits of living with Fibromyalgia that put me at home 24/7 two years ago, December 7th. I had worked out a lot of my need for “getting out” and “seeing people” well before the pandemic bomb dropped.

I looked at my last year’s post and smile at its normal goals. All I thought I needed was to develop a daily schedule to keep me motivated and moving in a good direction. It was good that I worked on developing a routine. In fact, reworking my morning routine last month has helped me to have better than average days pretty consistently this past month. But, I’ve really let go the idea that I need to schedule every moment of my day/week like I had been used to when I taught. This is a gift of retirement and of the pandemic.

  1. New Year Resolution: Planning to Live PurposeFULLY
  2. Hats Off to Teachers: A New Kind of Stress
  3. Dealing With a New Diagnosis
  4. Traveling Across the US in the Time of COVID-19
  5. Seven Ways Living with Chronic Illness is More Difficult During a Pandemic
Blue square with gold sunbursts, squiggles, dashes, and lines decorating the lower and right sides. The quote in the upper left corner in white font.

Symbolizing

Thinking of a symbol that represents my vision of 2021, two opposing images come to mind. One, is the symbol I have come to use as my personal symbol, the water lily. The other is a ticking time bomb. Let me explain.

As explained in my blog bio, I ended up getting it tattooed on my left inner arm after my first year of living with Fibromyalgia.

A photo of my inner left lower arm with the purple and aqua outline of a water lily symbol.
This tattoo reminds me daily to get up and live life as FULLY as I can that day.

This flower has meant a great deal to me nearly all my life. I grew up on a Michigan fresh water, inland lake, swimming is one of my favorite things to do (especially in a lake). The water lily was always so pristine and beautiful, but when I stepped down in the areas where it was growing my feet would sink into the sludgy muck it rose from. When I first found out I had Fibromyalgia, I was really low. It had sidelined me from my life, leaving me in bed, whimpering most days. However, after a year of wonderful guidance, luck, as well as family and friend support, I began to rise out of that painful mire and realized that I could recreate myself and live a FULL life of passion, love, and hope.

Click to listen to what I hear ALL the time, but especially when I’m trying to go to sleep.

However, with the constant thrumming/whooshing of my heart beat in my ears and the new diagnosis of FMD in both carotid arteries, one symbol that keeps popping to mind is that of a ticking time bomb. This one comes from fear and causes me to want to freeze where I am and not risk anything. This symbol I have to reject again and again because if allowed to take root in my belief system, it will stop me from living with any sense of joy or passion.

  1. Choose to Make Every Day a New Start
  2. Confession: I’m Not Well Today
  3. Times They Are a-Changin’
  4. Wooshers.com (Help for those with Pulsatile Tinnitus)
Blue square with gold sunbursts, squiggles, dashes, and lines decorating the lower and right sides. The quote in the upper left corner in white font.

Enduring

We are all enduring this time of the pandemic. It is hard to really encompass that the entire world is being affected by this at the same time. Regularly, I talk to friends living with chronic illness in Oregon, Belgium, New Jersey, England, New Hampshire, Singapore, and Bangladesh. It amazes me at the commonalities of our situations. We are enduring the ignorance of those unwilling to wear a mask to protect fellow citizens. Or comments like, just have those “most at risk” isolate themselves so we can go on with our lives. We all have loved ones we’re missing out on seeing and our concern that our governments aren’t able to do what needs to be done to protect us. Restlessness and uncertainty is in every corner of the world. Many of us are mourning the loss of those we loved due to COVID-19, other illness, and even from choosing that life is just too hard.

With this commonality of experiences, we know we’re understood when we complain about how a certain restaurant has disregarded any safety measures, or how we feel so cramped living with our parents, or how scary it is to go for a run when surrounded by others. That understanding is like a soft hug. And because of this, each of us is strengthened.

Blue square with gold sunbursts, squiggles, dashes, and lines decorating the lower and right sides. The quote in the upper left corner in white font.

Revealing

For me, 2020 gave me some major surprising revelations. I found out I had a new rare disease that probably has been there all my life. (They call it rare because of the known numbers. Doctors suspect it’s more common, just undiscovered until it’s too late-fatal stroke/heart attack, etc.) Had I not been insistent on checking out the pulsatile tinnitus that I have had for over 10 years, leading to the CAT scan of my head, it would still be unknown.

I found my birth father just a couple of weeks ago. How? My husband had suggested that I do the DNA tests that are out there because I’ve always felt bad that I couldn’t fill in the health info for my father’s side and with that, I couldn’t give any information to my own children. I ended up going through 23andme.com and Ancestry.com. When I was 12, my mom sat me down to tell me the story of my father. From that time, I have thought about it a few times. Because I look a lot like my mom and grandmother, I just never really felt like I didn’t know where I came from.

I’ve been surprised at my reaction at the revelation. Just knowing his name and a bit about him has somehow made me feel a bit more grounded. I had always thought that my white hair was due to my own maternal grandfather being all white by the age of 18. However, I found out that my father was all silver at age 30. I got a chance to see a couple of photos of him and of my 80-year-old half-sister. I see some resemblance (especially in the shape of my face). I was able to talk to my half-sister (who had also done 23andme.com DNA test which is how I found her), and she explained that my father was very active and healthy until the end of his long life. Somehow that’s revealed new determination in me.

Image of me smiling, showing my all white hair.
I come by my white hair naturally
and I’ve come to love it:)

A new revelation has been that I can be more physically active. My husband and I have always been fairly active; we love most outdoor activities. Since my Fibromyalgia diagnosis and even more since my FMD diagnosis, I have felt less and less able to do the activity levels and activities of my past. These past 3 weeks, with doing my new morning routine consistently, I’m feeling more energetic and clear headed on a daily basis. I’m still having to pace (meaning taking breaks and adjusting the activity I do- from higher intensity to lower from standing to sitting to laying, etc), but I’m doing so much better. Dare I hope that I’m moving in a positive direction. Oh, 2021 my hope is in you.

Finding contentment and appreciation in the small things of this life is a new revelation. I’ve spent so much of my life striving for the next thing, the next accomplishment, the next purchase, the next experience. But, this time of being required to be at home nearly all the time has revealed that I can be perfectly content with all that I am here and now.

Blue square with gold sunbursts, squiggles, dashes, and lines decorating the lower and right sides. The quote in the upper left corner in white font.

GRACING

To me “gracing” means to give thanks for all that this life entails. It’s not as easy as it looks at first glance. It requires deep acceptance of our human condition. I truly am thankful for the journey I’ve taken to get to the place I am today. All my eperiences -the sadness, the joyfilled moments, the fear, the quite, all of them-have grown me into a better human.

Gracing means to extend patience, forgiveness, and understanding to my fellow humans. I’m going to be honest, this year has made this harder for me than ever before. I’ve had the stance that we all are doing the best we can with what we have, and with that, we need to give each other grace. I’m never going to understand the choices of some, but I can honor that they are fellow humans, living this life in the best way they can see their way through, just as I am. We are in this life on earth together.

Gracing means acknowledging the creator, whatever that may mean to you. I choose to put my faith that there is meaning in each moment of our lives. I experience this whenever I take time to notice the sacred in the ordinary events of my day. I’m working on being present and taking time to relish each person in my life, being cognizant of what I fill my day, and the beauty of nature. Yesterday, I had two long conversations with friends I hadn’t talked with in over a month. It wasn’t a part of my day’s plan. In the past, I often felt like that was a waste of time, stopping me from “getting the things done”. Now, I see it as a very meaningful part of my day, giving my full attention to the nuances of our words. I regret how often I had the same attitude with my own children when they were growing up. I now am working to repair those times I was vacant when they were telling me important things from their day, thinking about something I needed to get done.

Gracing means to notice how I take care of myself. Noticing how I move (being conscious of my posture, how I’m walking, how I’m sitting). Noticing how I’m breathing, working to breath slowly, through my nose, using my diaphragm. Putting grace into each space of our home by organizing, simplifying, keeping only the things that bring joy and peace; and then, taking time to actually appreciate them. Nourishing my body with food that makes me feel cared for, pampered, fulfilled. Slowly, I’m getting back into cooking. In the next 8-weeks, I’m going gluten-free because so many with Fibromyalgia have found that it’s made positive impacts on their level of pain and other secondary issues the illness brings.

I see that with each of us doing things that bring grace to others and ourselves, we indeed will be we will bring the GRACE down to this earth which is so needed for this new year. May you have a year full of grace.

My daughter and I watched the movie SOUL the other night. If you haven’t yet seen it, I highly recommend watching it with your loved ones. It could spur on some wonderful conversation. One of my favorite quotes (there are several):

https://www.cnn.com/2020/12/24/entertainment/soul-review/index.html

Lost souls are obsessed by something that disconnects them from life.’ – Moonwind

Disney & Pixar’s Soul

I fully believe that if we connect, in all the meaningful ways, we will see our hopes for 2021 realized. We are all in this together. Let’s do this!

Blue square with gold sunbursts, squiggles, dashes, and lines decorating the lower and right sides. The quote in the upper left corner in white font.

The format for this post is thanks to A Chronic Voice linkup. This month, the topics were Beginning, Symbolizing, Enduring and Revealing. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at January 2021 Linkup (scroll past the prompts to find the linked up posts).


teal line drawn waterlily with teal lettering of the title and motto

25 thoughts on “We’re Together In This: 2021

  • January 1, 2021 at 3:47 pm
    Permalink

    I love how you say that the understanding in the chronic illness community is like a soft hug. It really is, and I have truly got through this awful time because of the care of yourself and so many others. Wishing you all the best with your appointment Katie, I do so hope it goes as well as it can for you.

    Reply
    • January 1, 2021 at 3:50 pm
      Permalink

      Thank you, Claire. I do, too. Your friendship and support is much appreciated:)

      Reply
  • January 2, 2021 at 4:09 am
    Permalink

    It really has been such a crazy year but it’s good to reflect on the lessons and change that it’s brought. Wishing you best of luck for your appointment on the 4th, I hope your doctor is a listener ?

    Reply
  • January 2, 2021 at 12:27 pm
    Permalink

    I truly hope your appointment goes well and you get the extra help you need. It sounds like you had a very interesting year and I’m glad you managed to stay safe in the pandemic. We plan to watch Soul in the next few days as a family, I’m really looking forward to it.

    Reply
    • January 2, 2021 at 8:18 pm
      Permalink

      I loved it. I hope you all do, too. Good for reflecting on our own life choices.

      Reply
  • January 3, 2021 at 11:33 am
    Permalink

    I’m sending prayers and healing vibes your way. I hope your appointment goes well tomorrow. I will be thinking of you. <3

    Reply
    • January 5, 2021 at 11:09 am
      Permalink

      Thank you, Lisa. It was a wonderful experience. I’m feeling so much better about things. I can get back to yoga.

      Reply
    • January 5, 2021 at 11:05 am
      Permalink

      Thank you! It really did. I will be writing a post, hopefully get it done for Friday. I learned a lot and don’t feel as much like I have a time bomb in my neck:) I appreciate your encouragement. Wishing you health, peace, and love in this new year.

      Reply
  • January 4, 2021 at 8:35 pm
    Permalink

    I loved reading your post. Finding your birth father is an amazing revelation and I love how you are finding out more about yourself. Getting fibromyalgia is so exhausting. I think most of us have felt a deep contentment during this pandemic, compared to those who don’t know what it’s like to be home all the time.c

    Reply
    • January 5, 2021 at 11:00 am
      Permalink

      Yes, I am blessed to have had the time of sick-leave, then retirement, and then this year of total….sheltering to be able to focus inward. I had forgone that for all of my life, barely taking into account any of my own needs.

      Finding out the name and a bit of info about my birth father has been in a strange sense just one more way I’m finding myself.

      Reply
  • January 5, 2021 at 1:21 am
    Permalink

    What a tough year for all of us. Dealing with a pandemic is one part of it, but then coping with illness and new diagnoses and petitions and everything else we go through just makes it so much worse.

    I hope your appointment goes well. I can hear the whooshing of my blood and have had tinnitus for years, but my doctors have always told me it’s due to being partially deaf in my left ear because of so many ear infections as a child. This new diagnosis sounds terrifying. The few heart-related incidents I’ve had in ER (med-related) had me so scared, I was barely able to focus. I’m glad you took some time off and it seems now that you’re back and refreshed and ready to tackle advocacy again in 2021. Very grateful for your friendship, Katie. I was also glad to see you posting again. I missed you!

    Reply
    • January 5, 2021 at 10:58 am
      Permalink

      You’ve been on my mind. I know that things certainly haven’t let up (on the stress, pain, and mourning front) for you. Sending you so much love and encouragement to hang in there. Wish I could do more than that.

      I will write a post (hopefully for Friday) about my wonderful experience at Michigan Cardiology Center. I got some great info and encouraging news from one of the top specialist of vascular health and Fibromuscular Dysplasia. I still have to get one more CAT scan just to check for it in the other vital organs, but they aren’t thinking I have FMD there based on the info I’ve given them and my other statistics.

      Reply
  • January 5, 2021 at 6:55 am
    Permalink

    You described eloquently what we should all aspire to, thanks for sharing! Today I am home alone with my children, once again taking on the mantle of teacher alongside other responsibilities. However, this time around I feel more prepared. Our school have simplified the home learning resources, my girls are responding to the lockdown much more cheerfully. We will get through this!

    Reply
    • January 5, 2021 at 10:54 am
      Permalink

      We will get through this. Hang in there. I’ve been helping with homeschooling my 5-year-old granddaughter. She’s back in person as of yesterday, but for how long….? I found that giving ourselves, the teachers, and our children grace (less stress) is definitely needed right now. I actually hope that this understanding of mental health will continue. (As a recently retired educator, schooling has been getting more and more stressful and learning shouldn’t be. In fact, that’s the least productive way to learn is when our brains are under stress.) Wishing you and your children all the best, Catherine:)

      Reply
  • January 5, 2021 at 1:36 pm
    Permalink

    I really enjoyed this post Katie, especially your reflections on contentment and thankfulness vs. striving. Noticing the small things and being present are practices I feel I need to frequently relearn.
    I hope your doctor appointment (and the trip to and from) goes really well.

    Reply
    • January 5, 2021 at 3:02 pm
      Permalink

      I appreciate you taking time to read my post. I find that I need to revisit again and again of being present, really moment by moment. I’m writing about my doctor’s appointment to post this Friday. It was a breath of fresh air. I’ve never felt so listened to.

      Reply
  • January 9, 2021 at 12:40 pm
    Permalink

    Hello, I really enjoyed your post 🙂 I hope your appointment went well and that you are ok. P.s I watched Soul recently and really enjoyed it, such a lovely film! Take care and lets hope 2021 has some positives,

    Louise x

    Reply
    • January 9, 2021 at 1:00 pm
      Permalink

      Thank you for stopping, by Louise. My appointment went really well. So thankful for good, caring doctors.

      Reply
  • January 11, 2021 at 9:56 am
    Permalink

    New diagnosis’s can be scary but at the same time necessary for treatment so I understand where you are. I am on the cusp of potential diagnosis of my vertigo. The vestibular disorder that is running in the lead so far with my doctors is Meniere’s disease. I do not particularly want that one. Since it leads to more severe vertigo and balance issues and then hearing loss. But at the same time, there are potential treatment options which I do not currently have. And I just want to be diagnosed and treated at this point. I’m tired of feeling so sick and non-functional and Waiting. But we do not Welcome a new diagnosis either. It is like enough already.

    Reply
    • January 11, 2021 at 10:24 am
      Permalink

      Definitely! I’m so sorry it’s taking so long for you (and having to go off the meds that had at least somewhat helped) to get a clearer picture. There is some relief in knowing what you’re dealing with, but man, it is enough… Sure hope you get back to having a life more hours of the day. I can see your drawing skills grow before my eyes. I love what you’re doing and you inspire me. Also, your writing has inspired me to get back to my novel. Just to finish it if for no one else but for me. I may need to discuss magic systems with you some day if you’re up for it? I’ve only ever written realistic and non-fiction, so adding magic is….well…scary but exciting.

      Reply
      • January 11, 2021 at 3:18 pm
        Permalink

        Anytime! I love talking writing and definitely magic systems! 🙂

  • January 19, 2021 at 7:37 am
    Permalink

    Hello once again Katie, and wishing you and your family a very Happy New Year. Here’s hoping that 2021 will be better for us all! I hope that your appointment at the beginning of the year went well. It’s amazing after going to so many appointments, new ones can always provoke worry and anxiety, especially when it’s looking like we’ll be adding another diagnosis to the already long list! Yes, the chronic illness community is amazing, and is always comforting to know how many people out there who cares and are on your side, especially when it feels like you’re all alone. And thanks for the film recommendation, will definitely make time to watch Soul when I find time!

    Reply
    • January 19, 2021 at 9:04 am
      Permalink

      Thank you, so much, Rhiann. The test is done. Was probably one of the more jarring tests I’ve had. Now the wait for results. When I had my first CAT w/contrast (head/neck) due to Pulsatile Tinnitus, the ENT told me it was just a precaution and he didn’t expect anything. I was not at all prepared for the call. Now, I’m pretty certain I don’t have FMD in my torso critical organs (due to no symptoms that go along with it), but….we’ll see. The good news is it only takes a few days to get the results back due to the online health portal. And, I know that the best FMD doctors are looking it over.

      Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.