My Chronic Health Journey

So I'm starting this blog with the goal of giving you the information and perspective and health insights that I wish I'd had much earlier in my chronic illness journey. Now I'm a trained naturopathic doctor, but long before that I was diagnosed with autoimmunity at the age of 14.

And I'm going to share with you today a little bit about my journey, which I think a lot of people with autoimmunity or any type of inflammation can probably relate to.  So back around age 12, I had a few years of pretty scary symptoms. I was getting colds and strep throat infections all the time.  I could not stay warm.

I was always freezing, especially in my fingers and toes. I couldn't get good deep sleep and I was so tired. All my joints and muscles hurt. My back hurt. I woke up with a puffy face every day. And I had really uncomfortable swollen lymph nodes. I couldn't do endurance exercise anymore because my body felt like it would literally collapse.

It was even hard to use screens because my eyes were so dry that looking at the screen made them even drier. And my hair and nails had become very brittle and my hair kept falling out. I felt like I wasn't able to digest anything. I would get insane amounts of cramping after eating anything. I had blood in my stools, and I felt like my insides were burning, like literally on fire, and I would almost pass out from the pain.

I tried to pinpoint and correlate my symptoms, but everything seemed random, which was so frustrating. I was so confused because I was eating healthier than my friends, I was getting in bed early, I wasn't doing any health damaging activities, and yet I was getting sicker by the day.  I saw doctors over and over, I was told to try cums, I got the same two labs over and over again, a basic screening CBC and CMP, which kept coming back normal.

Finally, I got referred to a gastroenterologist. I had a lot of uncomfortable procedures done, and I found out the hard way that I'm allergic to CT contrast. And I finally got diagnosed with severe fistulizing Crohn's disease, and also with enteropathic arthritis, which is Basically seronegative rheumatoid arthritis, where the joint inflammation is actually coming from the gut.

However, my journey was not straightforward from there, and I didn't have a typical response to the medications I was put on. I tried lots of different oral medications, including methotrexate, which is a chemomed, and some Crohn's specific anti inflammatories.  And six months of high dose steroids, which actually made me feel possibly worse than the autoimmune disease itself.

I drove seven hours round trip every  other weekend to get an IV biologic. I eventually developed an allergic response to the first one. And then I tried several more after that, all with no response.  I would have monthly visits with the gastroenterologist and I spent so much time preparing with all these symptoms to share and my ideas about what was going on, but then I had no time to talk in the visits and my treatment plan didn't change much except for swapping out one antacid for another or one biologic for another.

I was getting pretty desperate. I could barely function. I was five, nine and a size zero, barely over a hundred pounds. For reference, I was a very malnourished in spite of trying to eat constantly. And I was losing weight by the day.  I was recommended to go on a feeding tube. And I was told they had a pretty significant stricture or narrowing.

from inflammation and scar tissue and I was going to need surgery on my intestines.  I asked the doctor, is there anything else I can do? Diet, vitamins, herbal supplements, lifestyle factors? They said no, diet doesn't influence it and there's no other treatments. So my mom and I started scouring the very limited research that was available online.

You have to remember this was back in the mid 2000s and we found a book called The Specific Carbohydrate Diet where you cut out all the processed carbs and grains. I tried that diet and I found research about vitamin D for autoimmunity and I was doing a lot of my own research and learning a lot about diet and different natural supports, but I came up against a lot of roadblocks to including this holistic type of care.

So I was referred to a hospital nutritionist. I told her, I noticed dairy and gluten really water my stomach. I didn't eat those anymore. And she said, okay, you're malnourished and we need to get your weight up. So here's an ensure shake. And I read it and right there saw that the first ingredient in it was milk.

Next. She said, you need to go to McDonald's every day and eat a hamburger and fries and milkshake because we need to get your calories up.  I said, I'm eating a lot, but I literally can't digest and absorb my food because I'm so sick with inflammation. And she said she didn't have any further options for me.

So that wasn't helpful. So next, I took some research about vitamin D and autoimmunity to my gastroenterologist. I asked them about starting vitamin D.  They told me there was no evidence for vitamin D. All supplements were dangerous because they could interact with my medications. And. They actually told me that if I started it, that they would drop me as a patient.

So I asked to switch doctors. At this point I was, about 18, a little bit, just starting college. I was told that this adult doctor I was seeing, he was the only adult gastroenterologist in the entire state of Arkansas at that time. And I had to stay in state because of health insurance requirements.

I didn't want to drop out of school and going on a feeding tube back in high school when I was told I needed to, I didn't want to end up on a colonoscopy from surgery when my Doctor at 18 told me my structure was super bad. I didn't want to be on steroids for so long that I got osteoporosis and a deadly infection.

I felt like if I continued on my current trajectory, I was going to die.  Now, unfortunately, at the time, holistic healthcare was not so common or easy to access. I actually didn't know it existed and I thought my only options were You did what the doctor said or you do it yourself. So I decided that if I wasn't going to get help from my doctors, then I had to take control of my health myself.

I spent hours every day doing health research and I started adding some natural methods into my approach. I got some small symptom relief and my digestion improved a little, and that was exciting. I wanted to take more supplements to help my body heal. And I did. And through my research, I found out that there actually was a type of doctor that I was looking for.

Someone with a holistic and natural perspective who looked at me overall as a whole person. And so we found a naturopathic doctor near me. I went to see her and I got even more symptom relief. I modified my diet more with her guidance and things got even better. By this point I was just finishing up college.

I ended up moving to California. I kept up all those natural supplements that were keeping me feeling okay. And then my Stanford doctor put me on a new different biologic called Intibio.  Previously, all my other biologics had been more first generation and they had been targeting TNF alpha or more broad spectrum inflammatory processes.

This new biologic that I was put on targeted a really specific cytokine, which is an inflammatory protein found in the gut.  So between my improvements from the natural health pools, and then with adding this new biologic, my Crohn's finally went into remission after 10 straight years of active disease.

My arthritis went into remission alongside of it. I was relieved but also frustrated that the only way I was able to achieve remission was through becoming a sort of health expert on my own and having to advocate so much for myself. And that I wasn't able to just show up to the doctor and have them help me in the way that I was wanting.

However,  although I was now on remission, I had never had this nice, straightforward, simple case of just the Crohn's disease and arthritis.  I was having a lot of systemic symptoms in other areas of my body.  I was having chronic sinus infections and I couldn't breathe out of my nose. I was having chronically swollen lymph nodes, getting colds and flus all the time.

So having pretty intense fatigue and brain fog, interstitial cystitis and chronic UTIs, so chronic bladder pain, and just feeling generally really crummy. And I would have wandering pains through my muscles and all parts of my body causing muscle spasms. And these symptoms stayed even after my Crohn's was in remission.

My ANA, which is the generalized autoimmune marker that stayed positive and my blood labs, I saw separate specialists for every separate area of my body that was affected. And I didn't get any answers. I even got a sinus surgery where they go in and widen the nasal sinus passages and that didn't help.

So I did what I've learned to do and became my own health coach in all of these areas. I ended up finding a lot of natural ways and over the counter ways to help prevent sinus infections and chronic UTIs.  And I was trying to piece my healthcare together. And basically I was acting as my own health coach.

I was reading a lot of research articles every day. I was taking courses to learn about health. I was reading a lot of books. One of the best books I read was the ultra mind solution by Dr. Mark Hyman which depicted a holistic view of the body and went over the mind body and mind gut connection, which was pretty revolutionary for me at the time.

My health was doing okay by this point. I graduated college, I was volunteering for AmeriCorps for two years, and then I got started in my journalism career.  However, I wanted to write about health, and I noticed that I was always finding conflicting information, such as whether dark chocolate is good for you or bad for you, and many of the research studies had conflicting results, but I didn't know how to vet these studies and analyze them for bias and accuracy.

And I wanted to understand more about the actual functioning of the body so that I could assess what was healthy or not for myself.  And I realized, essentially, I wanted to be an expert in medicine, but I'd worked at a hospital at the end of high school, and I'd had enough encounters with conventional doctors who had not helped me and not listened to me.

really dismissed my concerns. I had enough exposure to holistic medicine as an alternative route at that point and implemented enough holistic processes to know that was the route I wanted to go. So I applied to a naturopathic medical school and as a journalist, I had to go back and get my med school prerequisites.

And side note, that was actually how I met my husband when he was going back to school too, and we were assigned lab partners in physics class. So I started med school at the National University of Natural Medicine in Portland, Oregon. And that was actually, that was the founding naturopathic medical school in the United States.

So the first few years in, I was pretty stressed, but my health was hanging in there. I had graduated summa cum laude from a big college with three majors and a minor, but med school was way more intense. I was taking 30 credit hour semesters, which is the standard. And with the amount of necessary outside study time, there was no way to do that and sleep.

I literally had to schedule in showers. So I'll talk in episode two a little bit more about my experience in naturopathic school and gave you the behind the scenes of what that's like.  But back to my third year of school, which was when COVID broke out, I started to get mysterious symptoms and the stress of school was not helping.

Which is ironic to me now, because yes, it's a holistic med school. And one of the topics we dive into is cortisol. But I unknowingly was, my stress was going off the charts and I was living in an apartment with mold. Then I didn't know it. I started to get shortness of breath, crazy headaches, panic attacks, and I've never really had anxiety like that before and on, I thought I had MS.

I couldn't walk more than a block at a time. Okay. And it was really scary. I would get a head rush and it was like I was gonna pass out. I couldn't exercise anymore because my heart rate would skyrocket, my blood pressure would drop. Again, saw lots of specialists. Saw all the best naturopathic doctors in the area.

And saw my professors in their respective clinics. And I got some symptom relief, but I didn't get any answers about how to actually start healing from this. For or what was going on with this weird complex health picture I was having. I was also having a year long non stop UTI, like literally ongoing for a whole year of a bladder infection.

Really weird joint pain, redness in my eyes, joint laxity or looseness in my joints, my ligaments, and my skin was breaking out. So I finally found a naturopathic complex illness specialist who had trained with Dr. Shoemaker and Dr. Richard Horowitz and was part of the ISEA and ILADS organizations.

So with a combination of symptom assessment, Reviewing my history and running labs that I had never had before, I finally found my root causes and a path forward. Mold illness, Lyme disease, multiple other tick borne infections, multiple viruses, and genetics that showed that my immune system had a really hard time identifying and eliminating threats.

I was so impressed and awed at this entire subspecialty that we hadn't learned anything about in medical school, but I ended up working there after graduation. And at that clinic, we saw patients who hadn't gotten help at Mayo or Cleveland or Stanford. And it was a revolutionary way of looking at the chronic inflammation cycle and cellular health in a system called the chronic inflammatory response syndrome, which can be triggered by any immune threat.

And the cell danger response, which is a system which goes along with that,  but understanding this changed my life because finally, when I started to do targeted treatment it wasn't all uphill because as I went after the root causes, I would get autoimmune flares, but I finally made a ton of progress doing all the advanced root cause physical health support.

I did end up plateauing at about 60 percent improvement. So if you've been really sick, you know that 60 percent improvement is huge. But I wanted to keep improving further and get my life back. So I started adding in supports for the naturopathic foundations of health, such as hormones cortisol.

Stress, sleep, hormones, the rhythm of my hormones, blood sugar truly getting quality sleep, not just being able to fall asleep, but stay asleep. Trying out a ton of things to see how to approach each area when it came to my ultra sensitive inflamed body.  I did additional learning about brain health and rewiring.

polyvagal theory and how the body goes into fight or flight and needs some rewiring. And if you don't change the brain patterns and thought patterns and your neurocircuitry, it's really hard to get into the healing space mentally. And I realized that we're not even in that state until we go through rewiring.

So I ended up working with a therapist who I still work with who uses polyvagal theory, IFS, and a lot of other things combined. And we identified all the healing blocks that had developed along the journey of my long term illness, such as the danger in having hope of healing and feeling like I was grieving the death of my old self.

And the betrayal I felt from my body and vice versa toward my body and a lot more. So I realized that soul or spirit level vitality was also an important missing piece. I was no longer doing hobbies and things that I love because, I, Was feeling so sick and I had gotten in the habit of not doing those things.

And I realized that doing those things that causes the body to want to really live and use its muscles and cells to the max and do things most efficiently. I also realized I was storing emotions in my body and I realized I'd been living outside my body. I had to reestablish a connection with my body.

And journey back to myself and rebuild a connection with something greater. All of this was part of my healing, everything, all parts of the journey had to happen for me to heal. So from my new, really well rounded perspective, I realized that many chronic illness approaches only focus on one of these areas.

They either utilize the new immune system research and target infections.  As their specialty, but they don't spend a lot of time supporting the foundations or the terrain, the background of the body, like the microbiome and hormones and sleep or practitioners just focus on the train, like gut health and sleep and nutrition, and don't have any knowledge about this immune trigger side of inflammation and very few doctors integrate brain health and mental health with physical health, even though they are extremely connected.

I decided to create my own method based off of what was working for me, and what I saw was missing from most methods. I combined the advanced, immune approach and this kind of chronic inflammatory response approach with all the foundations that I learned in naturopathic school. All the tools.

With regulating hormones, cortisol, stress, energy, blood sugar, all of that, detox, lymph, liver function. And I put all of these things together, comboed with the brain health part that had really played a huge role in my own healing. And it was a combo of everything that took me from feeling like I could barely get through today.

And I was in so much physical and mental pain that I wasn't enjoying my life. To here where I am now, experiencing daily joy and peace again, and able to function and live my life. I  am still on a healing journey, and I think I always will be.  I can't count the number of  big diagnoses I've been given on my fingers and toes.

I need way more to count. And my genetic immune variation is  one of the genes that is known to be the most susceptible to chronic inflammation, susceptible to infections, susceptible to mold toxicity and that's going to last throughout my whole life. So I only started healing from nearly 20 years of really serious inflammation a few years ago, but I have my life back and I'm able to do my passion, which is helping others through really difficult health situations.

I want to be there for people like you so that you don't have to spend hours and hours doing research on your own and spend so much time at the doctor with people who don't know or consider your whole health picture. So for everyone listening, I just want you to know that you can have your life back too.

You can find daily joy and peace again, and I really want that for you.

Sincerely,

Dr. Rachel