My Health Story
My health journey started early – without my awareness. When I was 6 months old I had an intussusception – where the large intestine telescoped into itself and tried to digest itself. I had 6 inches of my large intestine removed along with my appendix for good measure. I grew up with consistent bowel trouble and stomach issues.
After my first period, the rest were horrendous with worsening pain and other symptoms as years went on. No one believed me and attributed it to “normal” period pain. The only way to describe this pain was it felt like someone was stabbing me with a steak knife from the inside out and dragging that knife, in between stabbings, along my pelvic area lower abdomen. Sometimes the pain was so bad that I experienced it in between cycles, and when periods would hit, I would have added nausea, vomiting, diarrhea and more. The pain was also so severe 1,000mg of ibuprofen every 4 hours didn’t quell it. This would start a journey that included many ER visits, doctor’s visits and GI appointments and testing. All GI could tell was I had IBS and a nervous bowel.
It wasn’t until 4 years of GI testing and ER visits that an ultrasound showed a 5cm diameter cyst on one of my ovaries. From there, I was referred to a GYN (the Chief of Gynecology at Children’s Hospital Boston.) I explained my symptoms to him and he said “I think you have endometriosis.” I had a laparoscopy and they found, took pictures of, and lasered out the endometriosis. After surgery I was put on continuous birth control to suppress my periods.
There is no cure for endometriosis.
From here (around 2002) I tried a couple different hormone based treatments. Necon, Ortho Evra patch, etc. but I had a problem. I was losing a lot of hair and gaining a lot of weight. No one knew why and my Primary Care doctor figured I had an underactive thyroid. But, tests came back normal and it was ignored.
Fast forward to 2004, I got a referral to a nutritionist who explained many things to me and advised I give up most corn products, all trans fat and aim for a high fiber, low fat diet. I was also advised to start moving more. I gave up a lot of fast food around this time or chose better options. I also ate high fiber, low fat and started doing Walk Away The Pounds DVD workouts. In 2004, I moved to college, was given an antispasmodic for the nervous bowel to use as needed, and by my second semester I was down 30 pounds. I was also having bowel issues, anxiety, and migraines. My second semester I had to have all 4 wisdom teeth removed because they were coming in at an angle and the others were impacted. In 2005 I was on the Ortho Evra patch and one morning woke up in a puddle of blood. I had to call my father who got me over to Children’s ER ASAP. The ER said I wasn’t losing blood or platelets and let me go. I then had my treatment changed again and begged for a hysterectomy but I was only 18 and they wouldn’t let me have one “in case I wanted to have kids some day.” I was in a lot of pain at school so the GYN called in a prescription pain medicine I used one time. It put my head in a fog but didn’t take care of the pain. So I tossed them.
Somewhere between 2005 my anxiety was extra through the roof, the endometriosis was roaring and I had to go back in for surgery and then put on another treatment. Every time a treatment is changed I have to wait 3 months for it to take full effect. … yup.
After surgery sometime in 2006 I had so many symptoms and problems my GYN was referring me everywhere – urology, pain management, physical therapy, rheumatology, GI, etc. because the endo causes so many different problems but they needed to be tended to by their respective professionals. I went toe pain management but the anesthesiologist wanted to put me on Neurontin (gabapentin) and they gave me a referral to therapy (shrink), acupuncture and physical therapy. I tried gabapentin one time and didn’t want it so I didn’t use it and tossed it. I couldn’t afford acupuncture and I may have spoken with a shrink but I don’t remember. Physical therapy, was pelvic floor therapy for women’s health. In some ways it was a painful nightmare. I was terrified going the first few weeks. The internal work was incredibly painful but I learned a lot.
It was around this time (2006) I started doing deep belly breathing, learning more about nutrition, holistic health, spirituality, etc. Eat To Live, Gerson Therapy, pilates, yoga, and more. I had even gone to see a Naturopathic doctor who recommended I might be vitamin D and B12 deficient and gluten and dairy intolerant. (She was right about all of those things.) I tried Eat to Live eating, I tried juicing, I tried being without gluten and dairy but didn’t stick with it for long. My PCP diagnosed me with fibromyalgia around this time and I was also hypoglycemic.
By 2007 I was put on yet another treatment, this time it was Lupron and it would put me into a temporary menopause. I had to track how I felt and also take add back therapy (progestin), along with a lot of vitamin D and calcium to off-set some of the potential bone density loss. In late-2007 I decided to do my own endometriosis research and found a treatment combining Femara (letrozole) with Aygestin (progestin) or Necon (combo birth control) with the intention of blocking estrogen. (Endometriosis lives on estrogen.) I presented the research to my GYN and he let me switch from Lupron to the Femara combo. He hadn’t heard of this treatment before so I was basically a guinea pig. But it helped and now is a treatment offered at Children’s and Brigham. It is worth noting, the Lupron made me feel like I was dying.
I had gone off and on the Femara, staying on the necon for a few years. It wasn’t until 2010 my GYN saw promising research about Aygestin and wanted to put me on it. I was experiencing more breakthrough bleeding than I was supposed to, but I didn’t want to be on another treatment. Each time it was basically a shot in the dark whether it would work, so I declined.
In 2008 I started learning even more about holistic health, nutrition, meditation, yoga, EFT tapping, and more.
In 2009 I got on thyroid medicine, among changing my diet, doing elimination diets, going to the Marino Center in Cambridge for help, but other than the elimination diets and stuff, no one could help me. The endocrinologist figured it could help even if my labs were normal. I had been experiencing the fibromyalgia, depression, anxiety, hair loss, weight issues, fatigue, and more. I also knew it was common for women with endometriosis to also end up with fibromyalgia and hypothyroidism. By 2011, after being on thyroid medicine for 2 years and not feeling much different, I tried magnesium powder (Natural Calm) for a couple weeks. I swear it changed the absorption of the thyroid medicine because I was f-ed up after that for years. I had to go off all thyroid medicine because I was sweating, had a resting heart rate of 120bpm, severe anxiety, diarrhea, I couldn’t drink much water or eat much and I would be stuck like this from fall 2011 until summer 2013. I was also experiencing endometriosis complications because of the thyroid chaos featuring bleeding and sharp stabbing pain. But I couldn’t get my bowels under control enough to leave the house, so that’s when the agoraphobia (I didn’t realize I have) took over.
By summer 2013 I knew I had a problem. I lived in denial from fall 2011 until summer 2013. Things were so bad with the medication-induced hyperthyroidism and being unable to leave the house, and the anxiety was through the roof – my doctor advised I try Zoloft for the anxiety. I was reluctant. I didn’t want to be on an anti-depressant because of the stigma associated with it but I decided to try it. I spent the first 2 days on Zoloft sedated with the lowest possible dose. (And no, I never took the Natural Calm magnesium again – I am still afraid of magnesium to this day.) Zoloft is my life saver. And in the fall I started online therapy.
For those wondering, I had then tried for a few more years, post 2013 to find and try better thyroid medicine but I just don’t tolerate any of them, so we gave up on that pursuit. I fired the endocrinologist in 2011 when this all happened. And my PCP said if it weren’t for the magnesium and everything, the thyroid meds in 2011 would have ended up giving me a heart attack and I would have ended up in the ER. Everything happens for a reason.
In late 2013 I was on Zoloft and mustered up the guts to go to the GYN for the first time in 3 years. I told her my problems and she ended up having to do a biopsy of my cervix. (My cervix has puzzled all GYN’s except the one at Children’s.) I cried. And, I was put on Depo-Provera shots. Also around that time I made it a point to go to the dentist.
Meanwhile, this whole time I was trying diets, elimination off and on, going without gluten, dairy, eggs, soy, and being vegan all at the same time. I was trying guided meditation and so many other things. I needed help and I would try just about anything.
In 2014 I decided to start in person therapy, and then in the fall change physicians to an integrative MD. I tried other endometriosis treatments in between GYN’s. The Depo proved to give me cavities (5 at once) and bone density issues I didn’t know could come from it. I also tried the aygestin then too but it was after I tried natural progesterone, which, god bless it, tried to put me on a cycle. However, because I had been first time intimate with my now fiance (together since 2008) and I was bleeding like a faucet (as per the norm for my cycles), I had to take a pregnancy test. If I were pregnant I would need emergency surgery for an ectopic pregnancy – but thank Jesus, I was not pregnant. I had to stop the bleeding by going on Depo again for 1 round and then switching over to aygestin.
By 2015 I had tried herbs like ashwagandha, kava kava, turmeric, ginger root, and others. I started going to acupuncture in fall 2014 (by student interns) and I started seeing an herbalist later that year. She is awesome BTW. I don’t take an herbal prescription currently but she was very helpful.
By late 2015 I started working regular work again – the last time I could work due to health was 2010 and even then I had anxiety and bowel issues forcing me to resign. I lasted from December 2015 through February 2016. By May I tried another job, but the company ended up going under by July. And then I started making gift baskets that October/November which gave me some Christmas money. In January I started working at a bank and that lasted until August 2017. My regular employment is spotty because my health sucks and this pattern would continue until present day.
Anyway, by 2018 I was trying even more stress reduction, meditation, herbs, acupuncture and SO MANY different things – aromatherapy, flower essences, crystals, Reiki and a million other things. And I asked my doctor about the many reactivations I have had of Epstein Barr Virus (the virus that causes mononucleosis.) I have an IgG deficiency that runs in my family, and I have had active mono a handful of times with several EBV reactivations. She would not let me go to Infectious Disease like the others wanted me to because another patient of hers was blown off by ID. They told her the EBV was fine and she had CFS/ME. Now, I was diagnosed with CFS/ME. I think CFS/ME is just EBV in disguise. You can try to tell me otherwise but I stand my ground on this based on my experience with it since the 2nd grade and my lab test results.
My integrative doctor having suggested in 2017/2018 I try a high fat diet resulted in my gaining 3-5 pounds overnight, and upwards of 40+ pounds in a short period of time. I am STILL trying to lose that extra weight. I am down 25 pounds, which is a start. But after this, in fall 2018, I fired her. I got a PCP referral from my most recent and kind GYN.
When I switched PCP’s I wasn’t able to do acupuncture because it was at a different location but I had stopped a season or two prior. Not all students were good with needling and that caused me extra anxiety. I saw my new PCP who was helpful and she was able to get me in to therapy. By 2019, the pain and neuropathy (itchy, burning, crawling feeling) of the fibromyalgia became too much, so I asked for Lyrica. My insurance required I try gabapenin first, so I did. I am still on it. And then I asked for a Neurologist appt for this and she kept me on gabapenin and also put me on Cymbalta – which even in a small dose, has been a life saver.
And then I asked for a psychiatrist (still seeing the same therapist, who, btw, figured out I have had OCD for the last 30 years without anyone knowing. This too has been huge in my health journey because I know what it is and I can do stuff about it.) The psychiatrist ended up weening me off Zoloft and increasing Cymbalta. Now I am also on a low-dose of gabapentin but I am also on prazosin for PTSD violent nightmares.
In between I have seen other nutritionists, I have gone to groups, I am learning some DBT and doing a lot of internal work like CBT, exposure and response, mindfulness and mindful awareness, cognitive reframing, and also learning self-compassion, and more. I am also learning about positive psychology (my degree is in psych), Buddhist psychology, and the psychology of happiness.
In fall 2019 I experienced a slip and fall due to negligence causing something resembling whiplash for the neck and shoulders as well as cervical radiculopathy on the right side. I did PT for this for a couple months but couldn’t lift moderate/heavy stuff or do repetitive movements or it would cause me major problems and I was told it was permanent. Fast forward about 5-6 months, driving to therapy Valentine’s Day 2020, I was in a car accident where a man running from the police T-boned me (his fault) while I was making a left turn. He could have killed me, but thankfully he didn’t. From this I had whiplash on the neck and shoulders, further injuring the cervical radiculopathy on the right and causing shoulder/neck problems on the left with severe tension headaches. He hit me on the driver’s side door/fender, I was driving. Once COVID stuff was lifted, I did 29 PT appts for this accident of which, it too is permanent. I have similar restrictions in lifting, doing things like plank and repetitive movements. I miss doing yoga.
In 2020 I found out it would be incredibly risky and dangerous for me to get pregnant because I experience such severely heavy menstrual bleeding. Not being able to have kids was something I grieved for a few weeks. But after talking to my fiance about it (immediately after I found out) we decided to adopt when the time is right.
And the beginning of 2021 was met with an asthma diagnosis I didn’t know I had. Now featuring 2 inhalers which I use together a total of 6 times per day. I also take cranberry to prevent UTI’s, calcium, multivitamin, high quality fish oil, and sometimes other stuff too. We are also investigating to see if I have PCOS as well (something that is common to have with endometriosis.)
If you are wondering – yes I still struggle with the agoraphobia. Sometimes I feel like a supermarket or store is 100 miles away when it is a 5 minute drive. I do go farther away now than I have since 2011, but I am working on going farther away. Additionally, if you are wondering, I am gluten and dairy free, low soy, low fat, and low sodium right now. Makes for a bland diet. lol. But I have been gluten dairy free since 2009. I have tried going back to eating them but they make me feel worse, so it isn’t worth it.
I have been learning a lot more about Buddhism and Eastern philosophy. I find it fascinating. I most recently have taken a huge love of the works of Ram Dass and I am learning Qi Gong.
You never know what someone is going through. I could hide it but why? So it looks like I don’t have a ton of health problems? The truth is I am constantly trying new things and learning new things and doing anything and everything I can at an attempt to feel even a tiny bit better. Does it take away my ability to do readings or Reiki or anything similar? Nope. I can still do all of those fine. Abilities are still at their normal levels and I do them all from home and when I feel my best. Plus, you can’t catch any of this from me. The tricky thing for me has been finding another regular job after the last one turned into a pressure cooker, overtime ridden nightmare.
One of my biggest and most mentally recited mantras is “I am here for a reason.” Despite feeling like crap and dealing with awful health my whole life (and I am only 34) the one thing that really keeps me trekking forward is the notion that I was put here for a reason. I might not know what that reason is or multiple reasons are, but I was put here on purpose, there is a reason for it. So, I gotta wait it out and figure out the why’s.
You know something – I have a TON of tools here, things I do, use, learn, learned, and so MUCH more. It is crazy. This is a journey and a half. But recently I was on a video-appt with my psychiatrist and I told him how with all my health issues, I manage them by keeping a positive/neutral mindset, focusing on gratitude and mindfulness. How I choose to live in some kind of awareness meets denial where I am fully 100% aware of ALL the health issues but I CHOOSE not to live in that place, that mindset and how I choose to focus on other stuff because when I do focus on the problems I have, I get sad and cry. So while I am aware of the problems, I don’t live in them. And, how in the morning, when I first wake up and I am in pain and I didn’t sleep well and I just feel like shit but I tell myself, “God gave me another day, I am lucky because I woke up.” “I might not feel well but I woke up today.” And in addition to that, this is how I reframe my thoughts and feelings. And my psychiatrist told me – you aren’t managing – you are thriving.