Let that shit go

I haven’t done a blog post in forever! I’ve been insanely busy with healing and finishing my master’s degree and coaching certification! It’s been a huge journey for myself since 2017 started. I vowed to leave behind emotions from my past and in January I felt extremely at ease. The last few weeks, emotions have been running high. Usually, anxiety is a huge battle for me but I’ve had it under control for the past few months. These emotions were different. I felt very sad and disconnected. At first I had no clue why. I thought to myself, “wait I worked on these emotions already”. So why would they pop up again? Triggers. For me, social media isn’t the best for my mind. I can easily get distracted from my ideas because I end up looking hundreds of people who are already working on something similar. But, a good friend of mine helped me to remember my motivation. I never competed with others, I never had a desire to. I always felt my life was my life, if that makes sense. That I am the only one in control of my life by my choices to create the life I want. I work HARD everyday on my mind. On my emotions. On my heart. On healing. And on my future. I know I will never have a chance to have taken the time off from a full time job to focus on my healing and school. I don’t take shit for granted. At all. I pray daily and my faith has become stronger, and I become a stronger person.

 

Do I let those emotions run me? Sometimes yes. Sometimes I get back to negative thinking and even hurtful and violent thoughts (I grew up very hard and violence always hit close to home). But I let those emotions out. I give myself time to be aware of them.

 

Not everything or everyone will understand how you continue to grow and those people are not meant to be in your life forever. I told myself I wouldn’t spend anymore time on people who don’t value me. And I did just that. Sometimes you have to take a step back and realize that the gain is bigger than the loss. I absolutely feel that way. I was mind-trapped by telling myself the people I lost in my life last year were irreplaceable. That’s the bullshit I fed myself and kept my spirits low from time to time. And that’s exactly what that is, BULLSHIT. Those people no longer served me or supported me in a genuine way for a very long time and I hid that shit and made peace with them time and time again because I was afraid of letting go.

 

Since then I have met such supportive and genuine people in my life. People who tell me they love me and truly mean it. People who give me hope and inspiration. I mourned letting go of old friends and intimate partners. I am giving out to others what I want others to give to me and I feel the fucking love so much!! It feels so good to support someone and know that they truly have good intentions.

 

If you are going through debating on cutting people out of your life, do it! I hope that you do. Eventually, situations will arise that may force you to cut people off. It was definitely the case for me especially since I forgive easily without setting boundaries and let the same people hurt me over and over again. It’s not worth it. Let them go. It is hard, hard as hell. So make sure to prepare yourself with journaling, reflecting, candles, and lots of chocolate. Oh and dancing like a maniac in your car! 

Reflecting

In the last three years since my diagnosis with UC, I’ve thought a lot about relationships. Naturally I’m an empathetic person. I’m vulnerable, I cry easily, and I love too easily. I’m talking all relationships: family, friends, and intimate personal ones. I assumed people in my life would step up and be there for me. I quickly learned that was not the case. Illness scares people, some people don’t and won’t ever care to understand let alone actually remember the name of your illness. I experienced how selfish people are and self-absorbed. I saw how easy it could be that my health was dismissed. I think we expect so much from the people around us during the bad times since they seem to be there during the good times. I became hurt, angry and disappointed at the lack of support and actions with the people in my circle.

 

I knew I had no choice but to be my own shoulder to lean on, which I did, over and over. Day in and day out in pain. As I smiled and told those around me, “I was fine” when obviously I wasn’t. I felt ashamed to continue talking about my health. Especially when it was so clearly misunderstood to almost everyone around me except my mom. I don’t think I expected too much of anyone at all. I wanted to know I had genuine people around me that truly cared. Fast forward to today, as I continue daily asking myself can I forgive those people, I can’t help but still be hurt. And that’s ok. I thought after 6 months of daily prayer, journaling, meditating, and therapy that I would automatically transform my anger into forgiveness and it would all be behind me. But that hasn’t happened, and that’s ok too. It’s ok for me to still feel pain from those who have hurt me. Not as a victim, but as a person who is aware of her feelings and accepts them without rushing any process. I respect my feelings and listen to what I truly need to take care of myself. I noticed as I did that more and more, people fell out and pulled away even more.

Guess what? I may still experience pain and anger from time to time (as this is all part of the process) but I don’t hold it against anyone. After all, we are all human and all make mistakes. I’ve accepted my life for what it is and when I did that and stopped forcing and controlling things (such as reaching out to friends first, spending time with people who didn’t care about me, etc.) I became more alive again. I became friends with myself even more. I fell in love with myself even more. Self-love is empowering, it’s intense, strong, and unlike any other love.

I’ve realized many of the people around me did not love themselves, they weren’t truly happy and that will eventually show and project and end relationships of all kinds in one way or another.

I don’t fault them for that and I’m no one to judge. But I know I am enough myself to move on from relationships like that and/or set boundaries (family especially). I know I am enough because I love myself. 

Next Steps:Test Results!

I’m done with finals! I’ve been studying hard so I’m really excited to be on winter break! I haven’t done a weekly update since before Thanksgiving because there wasn’t anything to update on. I was waiting to go to the Infectious Disease clinic at Stanford in order to be properly retested for Aeromonas.

 

I just got the test results back yesterday and was told it was negative! To be honest I was hesitant at first to believe it because of the past 2 tests I took and found that the doctor actually never tested me for it. That’s why I urge so many people to trust their intuition and be your own advocate and triple check everything on your health journey.

 

I’m seeing an improvement in my symptoms after 3 years after taking antibiotics just last month! Imagine being “treated” for ulcerative colitis both conventional and integrative without seeing any improvement longer than a few days off and on for THREE FUCKING YEARS and then I take two rounds of antibiotics and the symptoms go away. Tell me that’s not a fucking coincidence?

 

I had bloody stools for the last 3 years in almost every bowel movement with pain. I was constantly fatigued, depleted of energy, and had almost zero focus. I pushed myself beyond the limit of what I should have all because I felt ashamed or made to feel it was “in my head” or worse, exaggerated by so many people. It’s already an awful feeling to not have your health.

 

I don’t know what my next steps will be to be honest. I’m just so grateful to not have bloody bowels, you have no idea! I’m going to think about it this weekend and decide if I want to go through with the FMT clinical trial. My number one reason for wanting to get it is because it was a last option for me to stop the bleeding. So it makes sense that since the bleeding has stopped, that I need to think about it.

 

I tried to heal my gut before finding the culprit and that wasn’t the best way to do it but it did help me to keep inflammation down to some extent. I can even handle drinking kombucha now when before I was super sick after a few sips because of the fermentation and sugar my gut was sensitive to it.

 

I want to focus on more healing with certain foods that I will try to remember to share. Even though school just ended, I’m really excited to start wellness coaching courses next year! I really am so proud of how far I’ve come with handling my health and also making choices for my future so that by the time I am 100% healthy, I can really enjoy my career and help others. I’ll keep you posted!

Updates! Week 5

This holiday weekend has been amazing! It’s been filled with so much love, light and energy! I hope you all had a Happy Thanksgiving filled with love and food and health! I made a vegan/gf pumpkin pie and an apple pie, roasted balsamic maple glazed carrots, and bacon wrapped sweet potato bites! I worked really hard mentally to prepare myself this holiday season. Since I’m going through heartbreaks of friendships and love lost, I knew I had to prepare myself!

 

Meditation has been part of my life and daily routine for the last two years. I start with a short morning meditation that is reiki healing based. I might expand on my meditations soon because I realize how much they mean to me! I end the night with a gratitude meditation. Both of them together are under 20 minutes so I always made sure to make time and not put pressure on myself. It’s all about my own way and this is what works for me!

 

I started to work out in the last 3 weeks and have been loving it! It’s huge for me. The last time I attempted to start working out more routinely was in early May. I was VERY SICK and I knew it but I pushed myself. Let me tell you that for me there was such a mind struggle between telling myself I am healing and also listening when I am actually not feeling good enough. My body was going through a flare then and I still didn’t listen and would work out then feel HORRIBLE after. I ignored it and then I ended up in the hospital in my first hospitalized flare which I know it contributed to. I work out 5 days a week now. I’m loving hiking, yoga (both home and class), and I started at a new dance studio!

 

I’m impatiently waiting to get an appointment at the Infectious Disease Clinic at Stanford. This is vital because they need to accurately re-test me for Aeromonas spp (the infection I’ve been battling for 10+ months, which was discovered through the FMT trial which has yet to fully start because I need to rid this infection!) The last “re-test” I took did not even test me for the infection again. I know this because I called the lab and also requested the results myself. Unfortunately, this has been the way I needed to do things to get my health under control for myself. Trust yourself first!

 

So as always my health journey and ongoing health issues has been complicated! But I’m very hopeful they will treat me and I will be on my way to healing my gut and colon! If any of you have questions about how to advocate and get “through” to doctors, please don’t every hesitate to reach out. My health journey has been FOUGHT for by my mom and I. And we won’t give up! So even if you feel alone or are alone, support is what you need! You just need one person in your corner!

 

 

 

Week 4: Still waiting results and frustration!

Hi All!

 

I hope everyone is enjoying their Friday! My week has been crazy to say the least but it’s always a rollercoaster! I’m STILL awaiting results from my last stool test. It never takes this long! I’m pretty skeptical as to why it’s taking so long. My doctor emailed me the other day and suggested I take another round of different anti-biotics just in case. But, I decided to wait for the results and also test again in one week.

 

It’s frustrating because my doctor now is encouraging any anti-biotics since he knows I am desperate to get this infection gone! Although he wants to be helpful, I still leave his office in tears every time. It’s frustrating when a doctor looks at you with zero compassion. It’s most likely because he is intimidated by how much I educate myself on my health even though he is the “expert” and I’m the one going to him!

 

I’ve been through 6 doctors in the past few years so right now I can’t afford (both time and money) to establish a new relationship with a new doctor. I may possibly have a consultation with one in mid-January but haven’t decided if I am up for it (emotionally). It’s emotionally DRAINING to deal with doctors, especially western medicine doctors.

 

Prednisone effects are in full force and have been. It took my body awhile to get the “moon face” but there it is! One thing is not to tell someone with a chronic illness that they ‘look good’. I’m fighting an INVISIBLE illness that you physically can’t see. It’s about how I feel on the inside. I don’t have one single person who genuinely asks me how I feel. I’m going to do a post on how to support yourself with a chronic illness or in general. I’ve lost people in my support system and ultimately feel alone other than with God and the online community!

 

I started working out again this week! I’m so proud of myself! My good friend suggested her gym and really motivated me to go! That’s what sets friends apart from fake people to me. I want friends who encourage me and actually ask me to do things with them so cheers to good friends who love us! 

Week 3-FMT Trial

Last week I shared that they found A.Hydrophilia infection in my stool test. A few days later, I was informed they found numerous bacteria strains and the doctor switched me to a different antibiotic that is not resistant to the strain. It’s been a long battle with me fighting and PROVING what is actually wrong with me. Suffering is what I’ve been dealing with. In all aspects. I believe autoimmune disease especially IBD comes from a bacteria infection and then the body starts attacking that and eventually creates dysbiosis and attacks itself (in my case my colon).

That’s what is the most frustrating. For the last few years since my diagnosis, not much added up about having ulcerative colitis. I definitely have colitis (inflammation of the colon) but that can be caused by millions of different factors. To define it as an autoimmune disease is where it gets tricky. I don’t have ulcerations in my colon and I don’t have classic symptoms either. My case is complex and unique and I think it frustrates doctors I’ve worked with because of that. If they did find the culprit, I should have been healing right now or at least longer than a year ago. The amount of dedication I put into my health is insane to even me sometimes. I’ve changed my whole life for my health but it’s heartbreaking not to see results.

Next step is to retake another stool test (no worries, I’ve been doing them on and off for years now) and to see if the strain is gone (which I suspect it’s not since I still don’t feel well). Then I have a doctor’s appointment with my GI next week and we will see from there. I think starting the clinical trial has been a blessing because the bacteria showed up and my GI doctor is very very helpful right now (previously he wasn’t). Please reach out to me if you know someone who feels “crazy” for thinking they are sick and people are telling them they are not. No one KNOWS your BODY more than YOU. Don’t let ANYONE tell you that you aren’t “sick” or “it’s all in your head” because deep down if you know something is off, it is. 

Always go with your intuition!

Week 2 on the trial: Found an infection!

My battle with finding the ‘culprit’ that resulted in Ulcerative Colitis has been such a long and hard one. Back in December of last year I tested positive for a bacteria called Aeromonas Hydrophilia. I used the Doctor’s Data Parasitology stool test. I was told by an integrative doctor that having that infection was ‘normal’ and it didn’t need to be treated. That was actually the first time I just listened and agreed to a doctor.

I was so wrong to ignore treating it. I put faith in my doctor and was failed. After my hospitalization in July from a severe flare up, I was DETERMINED to really get to the bottom of this disease and not just find out what works for it. Like I said, although I found relief after switching my diet, nothing ever seemed to work to put me into remission.

For the last three years, I only stopped bleeding for barely 2 whole weeks. Other than that, I have lived in pain with urgency, frequency, bloating, and joint pain. There were times I began to think I should accept this as my life (since this was after all how I was living). But deep in my heart, I just couldn’t. I longed for the days where I could and would feel healthy again.

If you’ve been following my weekly updates, you know that I am in a clinical trial for FMT. Last week I did blood and stool tests. Low and behold, my GI doctor immediately finding results of Aeromonas Hydrophilia emailed me and prescribed the antibiotic Ciprofloxin. I immediately did not hesitate to take this. Since July, I had been working with a practitioner to rid that bacteria using herbal supplements. My advice is that I do truly believe in functional medicine however, I do also believe in conventional medicine in such cases. It really takes a lot of time, patience, and research to be an advocate for yourself on your journey. I feel more empowered to make decisions. Anyway, I was also told today that the infection is RESISTANT. So he prescribed me a different kind of antibiotic. I just started it tonight. I am very hopeful and curious to see the outcome. Personally, I have no over usage of antibiotics so I am comfortable taking them right now.

My next step is to finish this round of antibiotics and test again before the FMT procedures. If you suffer from Ulcerative Colitis, my best advice is to inform yourself. Always do your own research. I made up my mind from day one that I will CURE this disease and I am hopeful. 

My journey with FMT Clinical Trial

       Ever since I left the hospital from my first severe flare up in July, I haven’t felt the same. Both emotionally and physically, I’ve felt worse than I have in my whole entire life. I felt very sad. I was determined to get into remission. I started working with an intuitive healer in July and I recently stopped working with her in the last week or so. Overall, she really gave me sense of where I should be with my health and did help me tremendously. But, after many attempts to ultimately “heal” me, the fit just didn’t seem like it was something that was going to happen. I was devastated. I’ve been to so many types of different healers, practictioners, etc to assist me on my journey to remission. I feel like many people have given up on me and just want me to accept my pain as a way of life. I tried that for the last two years and it didn’t change a thing. For people with chronic illness, there is no certainty. The onlycertainty is the inconsistently of my health. After doing research about what my next step will be, I decided I wanted to pursue FMT. If you have Ulcerative Colitis, or know someone who does, it is worth looking into. Fecal Microbiota Transplant is a procedure (or multiple) that is experimental and has not been approved by the FDA. Basically, it involves transferring normal bacteria contained in stool from healthy donors into the colon of the person with UC/IBD. This particular one I am doing is at UCSF and I’m the last to enter this study. It’s a 3 year study but actively I’ll be a year on my end. I will be blogging weekly to tell you all my journey and results. It’s exciting but there are risks to the study like any other treatment/procedure. That’s what scares me the most is the risk and also what the outcome is. I plan on taking extreme self-care during the months of the actual treatment. I want to relax, have fun and do things that I want to do times a million! I also want to share how I will repopulate my gut bacteria on this journey. This can include other treatments like acupuncture, which I already do, and of course lots of healing foods and supplements! The first meeting went well. I felt like the research coordinators knew what they were talking about. Although to be honest I have done so much research I was already prepared. I took lots of blood tests and I will finish with two more stool tests before they can schedule my first FMT. FMT is done via colonoscopy and then the third treatment is in capsule form. FMT has been credited for its’ results to cure C.Difficile. Doctors and researchers are hoping that it will soon be a treatment to help cure or put UC patients in remission. Here are some amazing blogs and articles if you are interested in FMT. 

http://thefecaltransplantfoundation.org/what-is-fecal-transplant/

http://thepowerofpoop.com/epatients/fecal-transplant-

instructions/

 

Stuck in Thoughts

I know deep down I’m meant to inspire others. People who have felt like the world is against them. But you’re a fighter and you know that you can fight hard. Being given this hard to explain but given to me as a blessing, autoimmune condition is a blessing in disguise over and over again. It’s something I have to practice day in and day out. I have to practice speaking those words, thinking the words, and feeling those words. To fight the urge to not to want to constantly FIGHT your condition is easier said than done. For sure, I have my moments. Why? Why me? Why not me? In those moments of pain, I have to remember who I am, how strong I am. I can’t give up on myself. It takes so much vulnerability and courage to change your whole lifestyle and build the life you want as the person you want. It can feel very lonely, very scaring, and sad. But it also forces me to reflect on myself and do a lot of mental work to become the person I want to be. It takes forgiving yourself, it takes selfishness, it takes sacrificing, and it takes a lot of accountability towards yourself. At times you may feel like a failure, like you’ve tried everything, and you just want to give up, but you don’t. 

I still don’t know exactly all of my career plans but I know I will be inspiring people who struggle throughout this journey of change. I plan to talk about how uncomfortable it can be. It’s bigger than nutrition to me. Personally, I know there is purpose behind experiences in your life and you must pay attention to those signs. Those signs are telling you something and it is up to you to accept that or resist it. 

It takes truly wanting something more than you can ever imagine to keep yourself going daily in those moments. In times of “failure” view it as opportunity to see things different. In my life I’ve seen people give up during those moments and not see the opportunity that awaits them. Maybe they think they don’t have a calling or a passion. However, not every ‘breakthrough’ moment is a life changing experience. You don’t have to get “sick” or have something unfortunate happen in your life as a ‘wake up call’. There are plenty of signs around you daily that most people ignore. 

One of my dreams is to host circles and workshops where people can truly share their experiences and own them in their own way in a safe space. As that time in my life will happen I will continue to work towards it like it will happen. Believe in yourself because no one else will!

Hello/Introduction

When I envisioned this blog and website, I thought it would start about a year ago. I was ready for it but mentally I was blocked. I felt an immense amount of pressure and judgement from myself. I kept looking at blogs and judged that mine would never look like that. But I realized I was looking at the work that has been put in and built not the starting point. I knew I would have to start somewhere. I’m so excited that I’m actually posting. I hope you all want to join me on my journey.  

I’ve had Ulcerative Colitis for almost 3 years now. It’s been tough to say the least. I wish I could say I wrote down every feeling, every failure, every challenge, every mistake, and every experience down in the process. But physically, I didn’t. But that doesn’t mean I can still share with you all my journey. I will be posting weekly updates about my health and I will be adding past information in there as well. My goal to anyone reading this whether they have IBD or a chronic illness, or know someone that does, that they gain inspiration during their most difficult moments. I’ve been very alone and isolated in my journey. I don’t want anyone to have to feel that way. It’s such a hard place to be in to not understand your own health and wonder what is going on inside your body! People always say be grateful because you have your health but yet when you don’t they have no clue what to say. I’m very grateful for the state of my health. But, I know my journey to remission has been a long one and I’m not even close.

 

Sometimes my blog will be just rambling. Sometimes I’ll be very detailed about my health along with what I do for my own health, etc. I encourage everyone to write. If you are going through anything, writing is the best relief. I used to write poetry when I was very young, I was even published in a book. Then as a teenager it just went away. I guess I became too busy. Then in college I started to write again. Then I graduated and I stopped. But overall, I may not be consistent in my own journal writing but I do love to share my health, my soul, and be vulnerable. It’s part of the healing process. You gotta take the good with the bad. By the way, I won’t be editing anything in my blog. I don’t care to. So judge if you like but this isn’t academia. I already paid for my degree(s). haha. In the process of my master’s degree, it’s very different from my undergrad in sociology. Less and less writing. Nutrition is all about facts and memorization.

 

Oh and I have no clue or don’t have any care about how long or short my blog posts will be either. That’s the beauty of life. Nothing is certain, nothing is constant, it’s forever evolving. Part of my healing has been centered on my emotions. My experiences in my life in the last 3 years have been life changing. I have every intention of being honest about my experiences as well. It feeds my soul to share this. I hope you