11 Month Update: Trying to Heal My Interstitial Cystitis aka Chronic UTI
Where am I today? I'd say I'm hitting the 70% - 75% state! But is it permanent, NO! I have days where I slide backwards and I'm hurting at 55% - 60%. But anyway, how did I do it? I would like to document everything onto YouTube, because it's a lot easier for me to show you and talk about it, then typing endless blog posts. But I think I don't have the emotional and mental capacity yet to do YouTube. I've only released 1 Youtube video at this point, and as much as I would love to do more, I don't have that energy quite yet. One thing I am worried about though, is that... will this fully heal? Or will this last for a long time or forever? I read about other patients where they hit at 70% and then it stopped healing at that point, like they were stuck in pain forever. I do have to say that worries me a lot. Also, I fluctuate. Sometimes, I think I am heading towards healing, and then I will get worse again. So, not to be too hopeful... I just need to take this slowly step-by-step. It's very frustrating, and I admit that I have this never-ending anxiety and fear that I won't heal and end up with this disease forever, because I'm finding a lot of patients who are stuck with this disease for life. But then I read about others who have healed, so I have to take this day-by-day.
If you are new to my blog, I am currently in Month 11 of my misdiagnosed/assumed Interstitial Cystitis healing. I was told I had "no infection" by multiple doctors for months. I knew this was wrong, because this bizarre bladder problem started with an ordinary urinary tract infection and then manifested itself into a monster. I was always a healthy normal girl. How the heck would I get some random disease out of nowhere? So I did a lot of research and dug through tons of information on the internet! As it turns out, it was actually a long-term UTI (urinary tract infection) that was missed by tons of standard urine tests and tons of doctors in my country! ALMOST NO MEDICAL PRACITIONER IN CANADA BELIEVED ME. There was only 2 doctors and 1 naturopath who believed me, and I had knocked on over 20 practitioners' doors begging for help. The infection was found by DNA next generation urine tests by MicroGen DX in the United States, which you can find on my old posts under the category "Blog > DNA Next Gen Testing". I was recovering by natural methods: traditional Chinese medicine (TCM), a strict alkaline diet, supplements, pelvic physiotherapy and more. As of today, I am NOT recovered, but I hope to get there one day.
I have curated a lot of video content over the last 2 months. I won't be able to get to working and editing them until early March 2019, so my YouTube videos will probably start in late March or early April, depending on my learning curve on video programs. I am not well-versed with videography and need to spend time learning to add music and edit videos so they look and flow nicely. My 1st Interstitial Cystitis video on YouTube is so badly done and kind of shaky since I shot it on a cell phone at the time and was super sick.
If I decide I have the mental energy to do the YouTube videos, I will release them. If I get worse again and have massive anxiety, then I will hold off on this project.
If I decided to do YouTube videos, they will talk about:
If you are new to my blog, I am currently in Month 11 of my misdiagnosed/assumed Interstitial Cystitis healing. I was told I had "no infection" by multiple doctors for months. I knew this was wrong, because this bizarre bladder problem started with an ordinary urinary tract infection and then manifested itself into a monster. I was always a healthy normal girl. How the heck would I get some random disease out of nowhere? So I did a lot of research and dug through tons of information on the internet! As it turns out, it was actually a long-term UTI (urinary tract infection) that was missed by tons of standard urine tests and tons of doctors in my country! ALMOST NO MEDICAL PRACITIONER IN CANADA BELIEVED ME. There was only 2 doctors and 1 naturopath who believed me, and I had knocked on over 20 practitioners' doors begging for help. The infection was found by DNA next generation urine tests by MicroGen DX in the United States, which you can find on my old posts under the category "Blog > DNA Next Gen Testing". I was recovering by natural methods: traditional Chinese medicine (TCM), a strict alkaline diet, supplements, pelvic physiotherapy and more. As of today, I am NOT recovered, but I hope to get there one day.
I have curated a lot of video content over the last 2 months. I won't be able to get to working and editing them until early March 2019, so my YouTube videos will probably start in late March or early April, depending on my learning curve on video programs. I am not well-versed with videography and need to spend time learning to add music and edit videos so they look and flow nicely. My 1st Interstitial Cystitis video on YouTube is so badly done and kind of shaky since I shot it on a cell phone at the time and was super sick.
If I decide I have the mental energy to do the YouTube videos, I will release them. If I get worse again and have massive anxiety, then I will hold off on this project.
If I decided to do YouTube videos, they will talk about:
- how I was misdiagnosed with Interstitial Cystitis, Pelvic Floor Dysfunction, Bladder Pain Syndrome, Auto-Immune Disorder when all I had was a UTI that wasn't resolving
- how I was able to disprove IC and that I actually HAD AN INFECTION using MicroGenDX urine testing
- how I ended up in a wheelchair from severe bladder pain, wrongly told by drop-in doctors that it could be a life sentence of IC for me, and now I'm walking (no running nor jogging yet), and able to eat more foods
- what natural and alkaline foods I ate to get up to 70% better
- how I was up and down in my recovery: got better, then worse, then better, then worse, it was up and down as I struggled to figure out what was happening
- what water brands I drank to keep the PH neutral
- why drinking alkaline water isn't the best method (it hurts digestion) for sensitive bladders
- what other tests I did (food allergy tests, stool tests) to find clues to help my bladder
- what TCM (traditional Chinese medicine) I did to heal my severe bladder pain from wheelchair to walking
- what pelvic physiotherapy I did
- what supplements I took that helped and which ones hurt and which ones didn't work
- which antibiotics I took (many many rounds) and which helped and which didn't work
- at this point in time, I am now able to eat much more foods without hurting my bladder and my videos will detail what I ate during months 1 - 6, months 6-8, months 9-11 during my healing
- what juicing did I do at home to keep my bladder soothed and happy
- my alkaline Interstitial Cystitis recipes, meals, and cooking methods
- why raw, steaming and boiling is good for your sensitive bladder and why baking, frying and stir-frying will burn your bladder and set off flares
- how the IC alkaline diet unfortunately dropped me down over 30 lbs but healed my bladder, it was a trade-off. And how I am regaining my weight now while healing my bladder
- how this healing process is NO PAIN, NO GAIN --- there will be PAIN to heal, and how I endured it
- how I experimented with different foods and supplements through a process of elimination to find out what hurt my bladder and what didn't
- how I dealt with severe anxiety, fear, depression, applying for legal euthanasia, and my 2 failed suicide attempts... and how most therapists aren't useful for me for this condition
- which support groups you can turn to and who helped me during my time
- which doctors and specialists I spoke to, many slammed the door on me or told me that there was no cure. I won't talk about who the assholes or useless ones are, I will only talk about the ones who listened to me and tried to help me
- my experimental treatments that costed me over $10,000.00 Canadian (and still climbing) that failed, partially succeeded... but no full cure yet....
- my mentors: people who personally had IC or long-term UTIs or pelvic floor dysfunction
- how taking time off is important: I used to work part-time, then completely stopped working while I fought this, and I do not plan to return to work until hopefully I get fully recovered one day?
- how I applied for disability and got REJECTED because bladder pain and long-term UTIs are not recognized as a disability, and how frustrating that was
- how support groups in my town completely failed me -- but online support groups helped