Dear Trudy,
How are you? First to wish you a happy year and that you keep being such a wonderful person as you are. Yesterday I just was thinking that I do not receive the emails I used to regarding the group anymore. I miss it a lot. To me it is so important to keep in touch with my "sisters" who share this important issue in our lives. Thank you very much, if you could answer me and give me some news?
With love, Ana
Dear Ana and Other Readers of this blog,
Thank you for your sweet email, Ana. I appreciate your long-term interest, support and patience. I have been struggling with the future of this blog: how I want to proceed, and maintain content that is vibrant, fresh and engaging. Because of your email, I have made a decision regarding the direction I want to take. I have always been honest with you, sharing my most intimate concerns. I now know I need to be honest about the next stages of bladder dysfunction, which I am facing. I get heart wrenching emails from those who are newly diagnosed. Your bladder and bowel are not working and it seems like the end of the world. It was for me, too. I was so upset and embarrassed. As you all know, I journaled and with Julia's help, started writing this blog and eventually published the book, Beyond Embarrassment : reclaiming your life with neurogenic bladder and bowel.
Our paths are so similar, once our bladders stop functioning normally. First we learn to use an intermittent catheter and manage a rogue/unpredictable bowel. Eventually, we figure out how to manage it and it all ends up working, more or less; things settle down.
But sooner or later, we experience chronic bladder infections, due to the introduction of a foreign object into our bladder, several times over the course of the day. This is so hard. The screaming pain, interruptions to our routines, including taking time off work for a doctor's appointments or dropping off urine for analysis. Then, the race to find the correct antibiotic, and afterwards, completing the course. Eventually, that drug stops working, and we're back to starting another course or begin the search for a new class of antibiotic, and always at the most inconvenient time! We all try to cope with this cruel cycle and just live our lives. But, it's frustrating and it wears you down.
Our doctor says, "Try to push past the pain. Cloudy urine is expected; take Phenazopyridine and see if it masks the agony." It never did for me. Seeing the lab techs.' face when cloudy bloody urine is dropped off and hearing them comment to the others, "Oh, she uses an intermittent catheter." You think you're used to dealing with your condition, but even an innocent comment can break through the thick skin you've managed to put on.
So, now, I give you the third revelation of our plight. The infection can eventually travel up into the kidneys and cause damage. For me, when the urologist told me that I need to take an antibiotic for the rest of my life, it became clear that my kidneys would be taking a hit. At that point, it didn't much matter that in addition, the antibiotics might eventually cause pulmonary fibrosis, due to a collection that could be building in my lungs.
So here's my news: The reason I have not written in a while is because I was fearful to share with you, what has been weighing on my mind & that I am now going through. I cannot put a fun spin on it. It is hard and my fear was that it might be discouraging to anyone who has received a recent diagnosis of underactive bladder, urine retention or neurogenic bladder. You are like a dear second family, that I relate to; I always want to be a source of encouragement to all of you. But because of my many bladder infections, over the past few years, I now live with moderate kidney function. My kidneys are only partially effective and because of this, I need to be careful about what I put in my body, that will put additional strain or create additional toxic effects on them. Advil/ibuprofen is a "no-no," except a tiny bit because they raise blood pressure which strains the kidneys even more.
Why am I so concerned about a little pain killer? Over the past few months I have developed painful joint aches (maybe due to a bug bite), especially in my neck. It is so painful. I frequently get headaches. My skin is itchy, as well. During this, in a way, I have felt a bit like an imposter standing before you; not quite as frank & honest as I would have you believe. On the outside, Everything is going great: No more bladder infections, my daily routine is a piece of cake. The bowel problems are easy: I know what to do to manage them with diet & a few precautions to have a good day. Life is easy and I almost forget my bladder and bowel problems all-together.
The biggest challenge with third stage kidney failure is pain management. Anything that puts additional strain on kidney function or results in toxic by-products can damage them even further. I have tried massage, but to little effect/result for my pain. My physical therapist did little except refer me to a book about "pain control," suggesting I should "get a life, enjoy my family, serve others more, and journal". Geeze, I think I have done that. My family doctor has been no help, either. So right now I am just blindly trying to cope and look at alternatives. By the way, I want to mention that The National Kidney Foundation (NKF) does recommend to remove herbal supplements from your diet once you start losing kidney function. Read more
I am not a medical professional and this new stage frankly dumbfounds me. This pain is new to me. I had grown comfortable with my situation. Honestly, I try to eat right, I exercise, but chronic pain is so hard. I am trying to work through it. Push past it. Doing my best. Perhaps it will get better . . . I hope so. For right now, I am just trying to push pass all the discomfort and lead a full life. It's what I stand by!
So now, you hopefully understand my dilemma . . . somewhat. When I get letters from the newly diagnosed, I delight in walking them through the process of getting their life back. Well, I do have one more confession to make. I have been a bit depressed, so I have ignored a few recent "newby" emails. To you, in particular, I am sorry and apologize. This has not been easy for me to share with you. I have no real advice to offer. I am stumped, and do not want to sound like a deadbeat or a whiner. Please forgive my absence on the blog over the past few months. I will try to write again. Now that I have let you in on my latest plight, it will be easier for me to write. Please do not let my honesty discourage you. This is the real reason I have been absent.
Let me say, for now, I am trying to deal with this new hurdle - I am open to trying & seeking new ways to find relief. I am back in the saddle and will respond to you personally. Please keep the letters coming. I love you all, I honestly do! So much hope surrounds the diagnosis of neurogenic bladder and bowel. Indeed, it is not the end of the world. We are able to lead a wonderful full life, just by exercising some extra care and taking basic precautions. If we lose hope, how do we live? We have so much. Our God is so good.
How DO we deal with pain and impending kidney failure, at the same time? Have you planned for good pain management when the time comes? What alternatives to analgesics (acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs)) and opioids exist, such as cryotherapy, physical therapy and acupuncture techniques; do they work for everyone? Do current guidelines provided by nephrology specialists adequately guide good decision-making?
Do your homework, talk to your doctor(s) and share your thoughts and experiences with all of us.
References:
Recommendation to avoid Herbals (NKF) Use of Herbal Supplements in Chronic Kidney Disease
Clinical Kidney Journal Guidelines for pain management https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5622905/
Acupuncture for Kidney patients https://www.worldscientific.com/doi/pdf/10.1142/S0192415X18500611
https://www.worldscientific.com/doi/pdf/10.1142/S0192415X18500611