Getting My Life Back, Slowly and Steadily
My quality of life has improved tremendously, so I am rarely updating this blog anymore because I am out enjoying my life most of the time now. I am not yet 100% cured, but I am living closer to a normal life now. I am not yet at a normal life though, there are still some effects of the bladder that prevent me from living a fully normal life. There are still times I feel anxiety, sadness and fear about the bladder... that maybe it won't reach 100%... that it will fall backwards... or that this whole disease will happen to me again in the future. This disease gave so many women (and myself) PTSD. However, compared to being in a wheelchair and weeing hot lava every 5 minutes two years ago, my bladder feels better today than it ever did in this long trek of Hell. I am almost pain-free, and the burning feeling in the urine only happens a few times a day at a slight to moderately low level. This tells me that I am not healed, but I am getting there, closer and closer. The streams can range anywhere from weak and slow to almost normal pressure, and I can empty properly. The frequency however, is still there, meaning that the bladder will feel full after 30 minutes to one hour. The urgency is also there but at a much lower level, I still get that weird twinge but it's not like a panic-attack inducing twinge, it's more like a low twinge. I can still feel my bladder fill up slowly, so I still have this bladder awareness and I wait until it's super full before I go to the washroom. I don't go as soon as I feel I have to, because then it may feel hot or burny or not have enough. I go when I feel super full and then it's like an almost normal stream, but with always a slight tiny burn at the end. So what am I currently doing?
1) Long-term aggressive antibiotics: I am on long-term antibiotics (since August 2019) and eventually when I get to 100%, I will wean off them and get off them. That's how Professor Malone-Lee and Dr. Stewart Bundrick does them. It has been a year on antibiotics and the reason why it took so long was because we were trying to find the right combination, with the help of Pathnostics and Microgen DX. I am amazingly better than I ever was; my bladder is the best today that it ever felt in this 2.5 year trek of UTI Hell. I was on 4 months of Levofloxacin 500mg twice a day, then Macrobid + Bactrim DS twice a day for half a year, then switched to Augmentin + Bactrim DS twice a day several months ago. I do Microgen tests before each switch to see which bugs are still remaining. I do the test while I am on antibiotics, and if a bug will still show, this reveals that the antibiotic I am on is not killing that specific bug. So that is how/why we do the antibiotic switching to cover all bases.
2) Strict clean natural alkaline eating: I still eat clean and as alkaline as possible. If I deviate from this, the "flares" happen. If I stay on the clean diet, I don't have "flares." I haven't had a "flare" in a long long time. I even forgot how they used to feel like. Everyday, my bladder and urine is quite steady, it feels the same daily. It is getting close to normal. It's not quiet, but close. I know now that I can heal for sure. I don't eat the IC diet, it's garbage and includes so much terrible foods that will wound a bladder. I eat MORE STRICT than the IC diet. I eat only foods from the Earth, no packaged food, no artificial foods, no boxed or store food. I literally eat as if I were grabbing food from the ground. You can read what I eat in my old food posts.
3) Don't overdo the supplements: My bladder was more hurt on more supplements! Most were a scam and a huge money sinker. I currently am on: Kirkman NAC 100mg twice a day, WestCoast Mint D-Mannose powder 1 - 3 teaspoons a day since my old tests showed e-coli, 6 Florastor S.Boulardii probiotics a day (you don't have to take as much as I do, I take a huge amount because I am on antibiotics), and starting up Ancestral Supplements Grass Fed Colostrum soon. That's it. I'm on nothing else!
4) Keep a network of positive friends who aggressively look for answers and are healing and/or healed: Several of my friends who have started this journey with me have healed which is encouraging but also makes me jealous, haha. Their UTI started before or after mine, and quite a number of them have healed now. We trekked through the same journey together - to Ruth Kriz, naturopaths, Dr. Stewart Bundrick and/or Professor Malone-Lee. They healed with long-term antibiotics and eating the clean diet. This has taught me that it's a beautiful mix of pharmacy medicine + natural forces that can heal the bladder. Also, I don't stay friends with people who don't look for help. They will continue to drag you down and make you feel depressed. I go with the people who are aggressively always searching for an answer, because they are the ones who will heal. Read my previous post about this.
So I will end this with:
I am rarely ever going to update this blog anymore. I will come on only to write a big update once in a blue moon. Maybe my next post will be "I'm 100% healed" but that won't be for a long time. Because even when we feel 100%, if we get off the antibiotics too soon, the UTI comes back. I've seen this happen to a lot of ladies. They feel great, get off the antibiotics, and boom, the UTI comes back next week! So I was taught to stay on it longer, for an extra three months even after I feel 100%, to fully eradicate any remaining stubborn bugs, before I get off them. As I feel better and better, I am stepping away from all bladder social medias and all things UTI and enjoying my life with friends, school, and thanking God for this miracle of meeting wonderful IC and UTI friends who are now my friends for life. After 2.5 years of constant bladder research, writing and chatting, my brain and soul needs a full break away from bladder-anything related for a long while. I want to savor and enjoy normal life once again. This disease has taught me a lot, that interstitial cystitis is not a diagnosis, but just something that has no meaning and means we need to find the root cause. It has taught me that so many IC'ers are actually embedded UTI bladders because so many have started improving and healing once they went on long-term antibiotics.