Mary has lived with FSGS for the last 17 years. Here, she shares her ten best pieces of advice for navigating life with chronic kidney disease.
*Editor’s note: We are pleased to bring you this article from a guest blogger. The views expressed below are Mary’s own and do not necessarily represent the views of NephCure. Information posted on our site is not intended to be medical advice and should not be considered medical advice, nor is it intended to replace consultation with a qualified physician or other health care provider.
1. Educate yourself about your disease.
I have researched and learned so much navigating a chronic kidney disease for almost 20 years. Anyone on this journey knows that there is so much to know and so much still to learn! Read every article you can find and talk to your doctors—we have so much information at our fingertips. Be sure you are gathering information from reputable sites; NephCure and the National Kidney Foundation can help you find the latest studies and most credible sources. Your doctors know what’s tried-and-true as well as what’s brand new in the field.
2. Get a second opinion.
Insurance companies will give you the chance to see doctors for second opinions—take advantage of this! Most of the drug therapies for FSGS and Nephrotic Syndrome are still in experimental stages. Be informed and know what you are taking; ask about the risks versus benefits for each new drug you start. Make informed decisions about your care, as there are many choices today. If you start the discussion with your doctors, you can give them the opportunity to collaborate—and that is to your benefit.
3. You must be your own advocate.
This is crucial in navigating the modern scope of medicine. If you don’t have time, or the task feels too daunting, appoint someone you know and trust. You can also seek an expert’s assistance. Whether it’s you or someone else, someone needs to be looking at your case holistically. In my experience with the way our medicine and insurance companies work together, there are specialists for each area of our care. While it is beneficial that you have someone who is most knowledgeable in each particular field, they usually only have time to go over your current symptoms, review labs, and make an assessment. We are not a heart, and a kidney and a brain… we are all of these, working together 24/7. It is imperative that someone oversees your whole case to get the whole picture.
Keep good notes in between appointments on what is going on throughout your body. In my own journey, this led me to study Homeopathy. It is a practice that looks at the whole person—the holistic view—and I am so grateful for this.
4. Consider complementary therapies.
There are many alternative options today. In America, we rely heavily on doctors and insurance, but in most other countries, a lot of what we see as alternative choices are mainstream. Explore and see what adjunct therapies work well for your individual situation. There are Homeopathy, Acupuncture, Chiropractic care, Massage and other body working methods; the list goes on. What gives you the most healing? Think outside the box and stay open minded—keep learning.
For me personally, it was a combination of therapies that continued to change as my pathology shifted. Look at your alternative options and talk to your insurance company to see what they offer. Sometimes you may be required to pay out of pocket, which, when it means higher health, is worth it if you are able.
5. Be kind to yourself.
While you and your advocate are busy researching, remember to be kind to yourself. You may need to use rewards for taking good care of yourself. It can be whatever gives you peace. Taking a walk somewhere beautiful, allowing time for a restful nap, spending time with people you love… the list is endless!
Slow down and listen to what your body needs. The rush of our busy lives needs to slow down so we can listen and respond. Nobody, not your spouse, parent or advocate can do this for you. Make time for what brings you peace, make time to heal, and allow yourself to receive from loved ones—not only give.
6. Monitor your diet carefully.
The well-known quote by Hippocrates, “Let food be thy medicine…” is still valuable information today. We are what we eat. Eat thoughtfully and you will feel the difference. In renal disease, there are many values to know and adjust your diet accordingly. Check to see if your insurance will cover you to see a professional nutritionist; they have so many ideas and options to tailor as you wish. You can sometimes avoid multiple supplements by just eating the correct foods for your unique body. I’ve found this to be so helpful and makes a difference in my own quality of life.
7. Take control where you can get it.
Another lesson I’ve learned is to take control where I can. Take steps to manage your health, organize your surroundings, and stay positive—you are not a victim. Keep a list of questions as they arise so you are ready the next time you talk with your health professional. Filing or keeping track of your labs and medications as they change is helpful to look back on and often helps in looking at the whole story. If exercise is what you are missing, make a plan that suits you. It makes us feel weak when things are seemingly spiraling out of our control—do something! Join a support group, see how you may be able to help others—there is strength in numbers for sure! I find that the more I can be in control of, the less that is beyond me, and the more gratitude I feel for what is going well. Look at the positive and do what you can to see the good in each situation. With chronic illness, some days this is tough! Realize it, feel it, and then ask yourself if you can do more to help meet your goals. Sometimes there is not much more we can do… than practice gratitude.
We know it’s good for us, but not all of us love it. Find what feels good and works for you. When it comes to working out, it is not one-size-fits-all. I personally love yoga, and I feel it helps me the most. It has many health benefits and depending on what type you practice, there are many fitness levels to choose from. It is crucial to keep moving and in doing so, avoid other health issues that may complicate your kidney disease. If you can exercise outside—even better! We all need at least 20 minutes of sunshine a day and surprisingly, many find that difficult to achieve.
9. Find a confidante or peer supporter to lean on.
As you are gathering information, meeting doctors and making informed decisions, it can be very helpful to have a wise friend or confidante to talk things over with. I feel blessed with great support, but one person in particular who is very helpful is a cousin who has FSGS as well. Our doctors practice differently, have different protocols and we ourselves have very different symptoms in our disease. It is so enlightening when we discuss what we are going through, and nobody gets it like her! She is going through or has gone through similar situations: physically, mentally and spiritually. [Editor’s note: NephCure offers a peer support program called Patient Connections, where you can be connected with someone who has traveled a similar disease journey. Learn more here.]
Find that person that gets your highs and lows—we all have them. Perhaps you have your faith or a clergy member that can be of great support, I know for me personally it has been key. Share with your family and friends, mine have been my greatest support! I’m also fortunate to have a husband who is by me every step of the way. We all need someone that we can count on. It lightens the load when we share, and we can learn so much from others.
10. Empower yourself.
Finally, and in my opinion most importantly, become empowered. This sounds simplistic, but it has been very profound in my life. Every juncture takes some amount of thought, time, worry… each decision may be very different. Be kind and gentle with yourself; take the time you need to gather all the facts and come to an informed decision. Once you’ve exhausted all of your research: own it! Know that at this time, you have a choice on how to proceed, and you’ve made the best decision for you. This acceptance, no matter what it is, gives us the strength to move forward with confidence. I have found this subtle wisdom to be key in staying positive, while keeping focused and enjoying daily life.
These 10 nuggets can help add quality to our lives when health can be a challenge. Acceptance is the reward that allows us to live with freedom and joy.
Mary Farradj has lived with FSGS for the past 17 years and has been a homeopath for 5 of them. She recently started dialysis treatment and is waiting for a kidney transplant from her sister. To learn more from Mary, or if you have a topic you’d like Mary to explore in further articles, please feel free to ask a question in the comments below.