For some of us, PKD is not our only health issue. In addition to living with PKD and being a kidney transplant recipient, I have epilepsy and serious back issues. I did not have any health hiccups last month, but even during a quiet month I have routine health responsibilities. This is what September was like for me:
- I had two check-ups at my family doctor’s office.
- I went to therapeutic Pilates twice a week.
- I heated and stretched my legs and heated and iced my back daily for my back problems.
- Depending on how I felt, I did light cardio a couple times a week.
- I went for monthly blood work for my kidney transplant.
- As a result of the immunosuppressant medicine I take as a kidney transplant recipient, I’m at a higher risk of getting skin cancer. Therefore, I had my 6-month check-up with my dermatologist.
- During this appointment, my doctor checked on the incision where she removed skin cancer four months ago and removed another suspicious mole.
- I also had an appointment with my neurologist for my seizure disorder.
- I take 20 pills every day, totaling 600 pills each month to keep me healthy and alive.
For me, September was a quiet month.
While this may seem overwhelming to a healthy person, this lifestyle has become routine to me. However, it is very time consuming. Mix in fatigue and not feeling well on top of daily health responsibilities – our health can become a part-time to full-time job. Balancing work/life and health issues can be challenging as we try to lead a fulfilling life.
I thought of the PKD community while at my neurology appointment last month. It was an “information overload” doctor appointment, which made me think of newly diagnosed PKD patients and how overwhelming it can be. We are all of a sudden bombarded with the diagnosis, information on the disease and what may occur in our future.
Even with all of the health issues and responsibilities that I have juggled since the age of five, I left the neurology appointment slightly overwhelmed with information and new things I should do and incorporate into my daily health regimen. I took a moment to remind myself that there is only so much we can do as patients and that we should not put too much pressure on ourselves. If we incorporate positive change into our daily health routine – one change at a time – then we are headed in the right direction. If we think we can do everything all at once, we become overwhelmed and unbalanced in our lives. When we try to balance life and our health issues, we must be realistic and give ourselves credit for all we endure and accomplish. I believe our health should come first, but it should not consume us. We all deserve a break; to be happy and live a rewarding life.
How do you find balance as you juggle life and health issues?
One day at a time . I do what is absolutely necessary. Work, feed my family an attend my sons sporting activities. And I don’t beat myself up when I have to rest. My kidneys are functioning at 18%.
Hi Cindy,
One day at a time is so right! Sounds like you are doing a fantastic job as you continue to positively move forward at 18% function. Great job! Thank you for sharing! Take good care.
You are SO not alone. Fatigue can be depressing and being depressed gets annoying. It’s a vicious cycle than no one other than chronic pain sufferers will ever understand.
I too have had lower back and leg pain since my early 30s. I was diagnosed with PKD at 21 and already knew all about it because my father had it. Both my parents were in the medical field so as I grew up I learned about it from a very clinical angle.
Now, at 47, I’m at 38% and on disability because of the back and leg pain. I take joy in the little things I get done every day and let’s face it, some days that’s just getting enough energy to take a shower or even brush your teeth.
Reaching out helps. There are literally thousands of people all over the world that can truly empathize with what you’re going through. Don’t ever forget we’re out here.
Hi Lisa,
Thank you for reaching out! There are so many fighters out there enduring so much, you included. We must stay positive and continue to enjoy each day no matter what. I appreciate you sharing your journey with all of us. It always helps others to know that they are not alone, that is one of the reasons I share my story. Wishing you all the best!
Oh Valen,
Gosh I have similar situations with my PKD and Transplant. I feel my life revolves around doctors. But you know what? I’m blessed, I can do the things I need to do, I have a new kidney , and I just need to continue to focus day by day.
I was adopted and had no idea I had PKD until I was 50. I thought I could beat it but no way! My transplant was March 4th of this year! I am 66! I very much enjoy discussing, listening and getting to know all the PKD Warriors on this site. Hope to meet you in Florida next year! Love, liza Mason
Hi Liza,
I appreciate you sharing your positive spirit and PKD journey. It has been wonderful to meet your through my blog and look forward to the day that we meet in person. Thank you for your support and friendship. Hugs!