“You woke up.
You got out of bed.
You got dressed.
These may seem like small things. But when you’re living with a chronic illness, these small things may take enormous effort and determination.
Not everyone will understand your accomplishment today, so I just wanted to take a moment and say…
‘WELL DONE, MY FRIEND.'”
I have not had a day without pain since the afternoon of February 1, 2013 when my L4/L5 disk in my back herniated. Over the course of the past 574 days, I have hurt in some capacity. I have been on a roller-coaster ride of excruciating, throbbing, and aching pain. The last time I experienced hurting to this degree was from my original polycystic kidneys, which were removed more than 12 years ago.
Pain can take a toll on us, both physically and mentally. It can wear us down. Change our ability to do things we once loved. I love being active and hiking, which I have been unable to do for a long time. I spoke to my back surgeon a couple weeks ago, as the road to recovery has been more arduous than I expected. The last thing he said to me was, “Keep plugging away.” I have severe muscle atrophy from the past year of being inactive. I am not only recovering from back surgeries performed earlier this year, but also trying to regain all the muscle strength I lost.
During the past 82 weeks of my altered lifestyle, I have taken pride in getting up, showered, dressed and ready for the day even if my only task is to endure my health challenges with as much grace as possible. By presenting myself like this, people have commented that I look like “the picture of health.” When reality is that getting myself presentable for the day might have been the greatest thing I was able to accomplish.
When living with a chronic illness and pain, it is hard for others to understand what we are enduring and what our day-to-day lives are really like. Polycystic kidneys can become massive and polluted with cysts. Others can’t imagine what it is like to look at an ultrasound and see our own kidneys look like this. Polycystic kidneys and back pain can cause unbearable pain. Others can’t comprehend what this feels like unless they endure it. Although we may look “fine” and our bodies may not outwardly illustrate how we feel and the pain we are living with, we can’t fault others for not understanding our illness and pain. All we can do is educate them and take the best care of ourselves.
Last weekend Noah and I attended a concert at Naggiar Vineyards where we listened to Journey Unauthorized. I rested and iced my back throughout the day prior to the event. Noah and I got up from our chairs a couple times during the event to stretch our legs and loosen up my back. Throughout the second half of the show, we sat in lawn chairs on the grass. I like to “people watch” and I had a lot of fun watching others dancing in front of the stage. I am not a big dancer, but I was envious watching them move around, as I know I would not be able to do that due to my sore back.
At the end of the event, they played a slow song that Noah and I slow danced to. Then the band played their last song and people swayed their arms back and forth in the air. Noah and I joined in and before long, my back started to hurt. I looked around and people were jumping up and down. I wrapped Noah’s arms around my waist. I hope as my body heals, it will allow me to be a little more free-spirited like the others at the concert. I also hope I will be able to get back on the hiking trails with my husband. I know it will take time and hard work, but I am committed. As my eyes scanned the crowd of happy, dancing people, I spotted a man wearing a prosthetic leg who was dancing fast and freely. I was inspired and thought if he can do that, I can one day too. So no matter what challenge we are facing, a chronic illness, PKD, back pain, here’s to us “plugging away.”
What helps you to keep “plugging away?”
That reminds me of a quote: “You can’t embrace your whole life if you’re shut down. I found out that I can’t just run away and shut down. I’m losing the rest of my life doing that.” –Steve Perry
Wouldn’t it be easy to just shut down some days? Since being diagnosed, I’ve had highs and lows. Moments where I’m in tears, terrified of the future… and moments where I’ve resolved to live every moment purposefully, regardless of what’s to come.
What keeps me plugging away is the thought of what I’d lose if I didn’t. In fifty years, I don’t want to look back at my life and say “Oh, boy! I sure wish I had worried about my health more often.” I want to look back at everything; good, bad and indifferent, and say that I lived. Every single moment.
The inspiration that I draw from friends and family, and from you, Valen, serves as a reminder of that. So, to you, and all of our PKD Family:
Well done, my friend.
Hi Shane,
I read your comment several times as it is so wonderfully written. Your words are full of strength, truth and positivity. I love this thought…”What keeps me plugging away is the thought of what I’d lose if I didn’t.” I share the same sentiments. You should be proud of yourself and how you are handling your diagnosis of PKD. I know I’m proud of you. Well done, my friend. 🙂
This past week has been a rough week for me. Just yesterday I had to have my mother-in-law, god bless her, drive 40 minutes out of her way and 40 minutes back to my house to pick me up from work and drop me off at home. My blood pressure was so high that I was dizzy, my teeth were chattering, and my thoughts were all jumbled. (After a visit to the hospital and several calls to my nephrologist we got it under control).
A week ago Thursday my husband and I got to see, through ultrasound,what my cyst riddled kidneys look like. Some of the cyst are fairly large and have grown in the month since my initial diagnosis of PKD. As scary as everything looks and how it makes me feel and the anxiety it is causing my husband and family I am thankful to finally have a diagnosis. I’ve been living with chronic back pain (which I thought was from my car accident), high blood pressure, exhaustion and various other ailments and thinking it’s all in my head. Regardless, I get up everyday and live the way I always have with a smile on my face. If not for me then for my husband, my kids, my parents.
People always ask me how we remain so happy with the hand we’ve been dealt. Not just the PKD but with everything that has happened in our lives. We’ve had a string of not so great luck in the past few years including 5 surgeries between my husband and I, a terrible car accident where I almost lost my unborn (he’s four now) son and leading to a very complicated pregnancy and birth, the back deck of our house collapsing and ripping the back side of our house off with it in the dead of winter (brrrrr….), and all the little misfortunes that happen in life that seem so consuming at the time but usually work out. We deal with it all because we feel we don’t have a choice. We make the best of every moment and always look to the future with the faith that it all happens for a reason and will work it’s self out. We know that the future will hold some really hard days but it also holds so really great days. It’s knowing that there are those really great days out there that gets me out of bed. (my kids usually come in and bug me if I lay in bed to long too…so even on the really bad days I get up for them).
My children are incredible little humans who on a daily basis remind me that no matter how hard life gets or how much it hurts we get back up and keep playing. My son, who I love dearly is a klutz, he falls and hurts himself constantly, a bump on the head or a scrape on the knee which will cause him to cry for a minute then I hug him he’s better and he keeps on playing. So if he can do it then I can too. It just takes me a bit longer for my body to bounce back.
Hi Julie,
Thank you so much for sharing. I have thought about you several times since we have connected on Facebook. PKD is so new to you and your family and I know right now it is all-consuming. I am so sorry you are in this stage. I am thankful that you have a diagnosis and you are able to connect the dots on some issues you have been dealing with. I have endured sky high blood pressure from PKD as well and it is super scary. I am glad they were able to get this under control for you. I know you have too much going on to process all of this. I hope things slow down a bit so you can start to digest all of the recent news. I am very thankful you have a wonderful husband and family to support you. It sounds like you have a beautiful spirit. Keep that positivity as strong as you can and keep finding reasons to smile. Hugs!
Valen, you are my inspiration! Blessings to you and all your family. xoxoxoxo <3
Hi Marsha,
Thank you for being such a sweet and supportive friend. Big hugs! xoxo
My little granddaughter; Venice, and my little niece;Aniston are what keep me going. Their unconditional love and the facet that they accept me as I am without judgement means so much. I also live each day to see my sons smiles…it is so often the little things that trulu mean the very most!
Hi Teresa,
It is wonderful to hear all of the love and smiles that surround you. I love the names of your granddaughter and niece! I am thankful to hear that you find joy in the little things. Many people miss the little things along their journey. Keep soaking in the love from your family! Hugs!
What keeps me plugging away, many things both large and small. But it’s by the grace of God that I endure, not perfectly, but willingly. So many steps forward coupled with disappointing set-backs and yet I can not give in, what would that say to my donor…thanks for your sacrifice but I’m done? No, there’s no way I could ever do that to my donor, my family, my friends or myself. Believe me there have been some dark, dark days, but I ultimately seek the light, whether thru another surgery, medicine, or determination. I have a purpose and I won’t find that purpose living in fear and darkness.
Valen you are an inspiration to us all.
Hi Susan,
Your donor would be so proud to read your heartfelt words of honesty, strength and determination. Thank you for sharing your beautiful thoughts. I appreciate your kind words of support. You are an inspiration as well.
Oh Valen, thank you for this post today, as I needed this more than you could ever imagine. This ‘lucky’ PKD patient has entered a realm that I was convinced I’d never see, that of pain threatening to become a chronic issue. I’m going through a bit of grieving right now and I’m struggling with a vision of a new not so kind existence. But then there’s you….wise beyond your years with vision, clarity, and remarkable strength. I wish I could wrap my arms around you and give you a gentle hug! I know I’ll be okay, with pain, or without, because my life is pretty darn awesome. I hope you can appreciate how special you are and how fortunate those of us are to have you touch our lives with your eloquent words. Keep on blogging…..keep on healing….and be well. {{{HUGS}}}
Dear Karyn,
After reading your first sentence, it made me so happy that I wrote this blog post. Saddens me to hear that you are entering the pain chapter, but good that you are being honest with the emotions you are experiencing. Your life is awesome and it is important to focus on all of the wonderful in your life. Like Eva and the rest of your dear family. I feel like I should read your amazing words of support when I wake and every time I begin to write a blog to give me that extra nudge of encouragement. Please know that your words have touched me greatly. I wish I could give you a hug too. I am hoping this next phase is not chronic and please know I am here if you ever need anything at all. Big hugs!!!
Valen….
thanks for this sentiment today… of late, it is increasingly difficult to get up and get going to my job as a HS teacher. While many know my health issues, few, if any, truly understand the difficulty in just getting up day in and day out, much less carrying on a full time job. People I work with give me platitudes and say “stay positive”, but as I approach dialysis, my fatigue has another goal. You have been such a motivational icon for me since we met briefly 7 years ago. Know that you give me hope each day as I move forward toward a transplant.
Hi Tony,
Thank you very much for this thoughtful message. I am honored to know that I help provide hope on your PKD journey. I am very sorry to hear of the pain and fatigue you are enduring. I completely understand and have great compassion for what you deal with day in and day out. Others can’t comprehend our kidney pain unless they live it themselves. It takes a lot of mental strength and a strong spirit to fight our fight and I know you indeed have that. As hard as it can be, we must keep plugging away. I know easier said that done, but I’m cheering you on and hope your energy is restored by the gift of life real soon. Take good care!