What's My Story? Why Am I here?
For two years in a row, the month of April had been more than a challenge to me. In 2017 I underwent total abdominal hysterectomy with bilateral salpingo oophorectomy (TAH BSO) due to severe endometriosis and adenomyosis.
I was so desperate to get rid of my pelvic pain which had been affecting me for years, and at that point almost on a daily basis. After the surgery, my OB-GYN confirmed that my decision was the right call - as they found out that my condition was at stage 4. It wasn't cancer, and I praised God for that, but the physical pain was beyond what my tiny little body could handle already.
As if the surgery wasn't complicated enough, they nicked my left ureter and it brought havoc upon my life in the days and weeks that followed. A Urologist had to be paged in the middle of my surgery, so he could attach my ureter back to my kidney and inserted a stent that was left in there for 6 weeks, to support healing. Both ends of the stent would dig into my organs every time I pee. It was by far the most difficult ordeal I've been through at the time. Even breathing itself was a lot of work, because my lungs were filled with fluid when I went back to the hospital just days after surgery for severe infection.
While there, they were not paying enough attention to me. I bloated up like a balloon ready to pop, and I couldn't even lean back in my bed because I would feel like drowning. My husband had to go to work on my order (haha), and I didn't want him to just sit there in agony for me. I remember vividly in the middle of the night I would get up, cling to my fluid stand, drag it with me as I gasp for air going out of the room, step by step. Everyone would be asleep, the hospital eerily still. My heart would call out to God, as I gaze up the glass windows. LORD HELP ME, HELP ME, HELP ME - that's all I could manage to utter. My days were dark, and too excruciating. One-line prayers were my steady lifeline.
At home, I eventually recovered, and went back to work after three months of medical leave. Life started getting back to normal, and I was completely pain-free. YAY!
April of 2018 rolled around, and I was starting to feel some strange symptoms. My brain was foggy, and I couldn't focus at work. I went to a Naturopath Doctor as suggested by the Psychologist that I was seeing due to the trauma I experienced from my surgery. But it didn't quite work out, we didn't fit.
Life moved forward with the strange symptoms getting in the way of my productivity. Starting June, it was bad enough that I was seriously contemplating on seeing a private clinic that focuses on bioidentical hormone therapy. I thought it was my lack of estrogen and progesterone, which were at post-menopausal levels already.
But life kept me busy as I led a group of friends to volunteer around the city so we could collectively give back to the community. I was also hesitant about going to the private clinic, as of course I had to pay out of pocket. As the months drew by my symptoms exacerbated. I was fatigued daily like never before - it was like death rotting inside me. Dizziness was a constant thing, and when I walk in the hallways at work I would do a zigzag line!
Insomia was also getting worse, which made my work days extremely painful. I wasn't productive and it was frustrating. By September 2018 my brain fog was keeping me from doing anything without pausing, as I sat there to the point of confusion and despair. WHAT IS GOING ON HERE?! I said. I would sometimes forget words, or jumbles them, and a simple task that require thinking like writing up a letter was almost impossible to complete. I couldn't even operate the microwave without thinking harder! My BP was also above my regular range, and I had slight tremors inside my body.
My irritability at the smallest things shocked me as I hear my heart pounding so loud in my chest, and my ears. I was easily angry, and by angry I meant furious and fuming over nonsense things. I was anxious all the time. On top of all these I felt pressure on my eyes and neck. My eyes felt like being pushed from the inside that I was scared they would pop out of their sockets. My neck also had pressure that radiates to my right ear.
What gave it all away though was my difficulty swallowing. It felt like food and liquid got stuck and snagged on something. I also feel this when I move my head to the sides. When I lay down, I feel like choking, and my throat was tight and tense. I knew by then that it may have something to do with my thyroid.
Finally, I booked that appointment and there was a 10-day wait time. I begged the clinic to squeeze me in because I knew I wouldn't make it by then. I opted to go to this private clinic because their options were a lot safer than synthetic hormones. I've read a book about hormones due to my surgery. Seven days and a comprehensive blood test after, my Nurse Practitioner (NP) at that private clinic relayed the dreadful news - my ft3 and ft4 hormones were through the roof! My TSH (thyroid stimulating hormones) was <0.01. She immediately referred me to an Endocrinologist on that same day, while prescribing bioidentical estrogen and progesterone. I was also put on 5 types of nutritional supplements - as some of my levels were low.
I knew I had to wait for a long time until I get to see the Endocrinologist, but I prayed that God will bump me up the list. Two days in, and I emailed my NP to say I couldn't take it any longer. All of my symptoms were increased in intensity by a hundred times over. She advised that I go to the ER so I could get help.
But then I got the phone call from the specialist. They were seeing me in 3 days. I thanked God for answering my prayer, as getting in early rarely happens. It's quite normal to wait months and months before a specialist could see you here - that's my biggest frustration with our healthcare system.
Dr. M was warm and competent. I remembered being distracted while she was talking because she typed furiously fast. She also gave me a code that I could use to activate a portal called MyChart, so I could take a peek at my results online - which I found quite nifty. She gave me a detailed list of instructions for the next steps, and generated some outstanding orders for my blood work so I didn't have to go back to the office every time I needed testing. That same day I went for a thyroid scan, more blood work and after a few hours she called me at home.
You have Graves' disease, she said. It is an autoimmune disorder that causes my body to attack my own thyroid, mistaking it for the "bad guys". (This is the simplest explanation I could give. If you're curious to know more, send me a note and I can explain in details haha!). I wasn't familiar at all about it then, and graves' sounded so grave and scary. This was September 25, 2018.
I was put on 30mg Tapazole immediately and I took my first dose that evening. I was also put on 60mg Propanolol for my heart, as it has been pounding wildly. She was concerned about it. I sat there, looking out my window at home confused about all that happened that day. Overwhelmed would be an understatement to describe my feelings. Nevertheless I was grateful to God that finally I had a name to blame for my symptoms. I immediately felt better - the drugs kicked in when I woke up the next morning. My hormone therapy was also slowly helping my body, and my supplements were amazingly effective. I was starting to feel normal, but not at my best still.
ANOTHER BUMP IN THE ROAD
Twenty days in, I woke up late Saturday night with itching. The back of my neck was swollen red and I thought a bug bit me. I rummaged through our drawers to find some cream, but I was also starting to itch all over. My husband made me jump in the shower, maybe it's just some bugs, he said. I felt relieved for a few minutes, until huge angry hives started breaking out on my skin. At the time we didn't know they were hives, and I was so confused about what's happening. I never had issues with allergies, except for the contrast dye that is used for xrays. I couldn't sleep that night because I was scratching until my skin bled. My husband would say, rub don't scratch. But I kept on scratching.
We decided to play it by ear in the morning, to see what happens or we'd go the ER if needed. By noon time of Sunday I was frantically finishing loading laundry because the world apparently doesn't stop for our illness. I prayed to God that I wouldn't wait too long at the ER. I texted some friends and my sister to pray. While waiting I noticed my husband fumbling on his phone to play word puzzles, nonstop. He wouldn't even look at me. I then learned later that he was so nervous and worried for me, so that was his way of coping. (Men😩, IKR?!)
After a one-hour wait (which is nothing, by Canadian standards) I was on the ER bed and they injected me with some Benadryl which made me woozy for the whole day. The ER Doctor said it was an allergic reaction to Tapazole. We went home and Dr. M left me a VM with a startling news the next day. Because you're allergic to Tapazole, I scheduled you for Radioactive Iodine Therapy next Monday, she said. I panicked because that sounded invasive.
I looked it up right away and indeed it was invasive and permanent. The procedure would destroy my thyroid gland for good, just so my symptoms would go away. But my situation will then be reversed, from hyperactive to hypo. So I will then be on a thyroid pill for the rest of my life, as thyroid hormones are very important for anyone to function.
It affects every single cell in my body and almost all of my organs - this I learned from research. That explains all of my symptoms!! Thyroid is a BIG DEAL!! I couldn't understand the logic behind the conventional approach to my condition - why would they kill my thyroid, when it's not the problem? Since the problem is an autoimmune disorder, why are they not addressing that instead? MY THYROID IS FINE! I said in my head. It is just responding to the antibodies produced by my immune system, that is why it's working hyperactive.
While I don't have a medical degree, my family members are mostly in the medical field. It's funny when my cousins and sister talk about anything medicine and I would zone out because I don't really get it. BUT this one was so easy to understand in simple English. It didn't take me more than 5 minutes to figure this one out. Conventional medicine just astounds me in relation to this! If A (autoimmune) is causing B (thyroid gland) to go wonky, which then overproduces C (thyroid hormones) to cause all my severe symptoms, why are we killing B (thyroid gland) permanently, and not address A (autoimmune) to solve my problem?
Do you feel me? Do you feel my body pulsating at the thought of this?!
If A (autoimmune) is causing B (thyroid gland) to go wonky, which then overproduces C (thyroid hormones) to cause all my severe symptoms, why are we killing B (thyroid gland) permanently, and not address A (autoimmune) to solve my problem?
I respect conventional medicine, let me just get that out there. It helped me live a better life by removing all of my damaged female bits due to stage 4 endometriosis and adenomyosis. There is a need for conventional medicine in our lives at one point or another. Our situation and its level of severity however, should dictate what kind of treatment we seek.
Invasive and permanent approach is not acceptable to me for this condition because it is irreversible. My uterus had to go, yes - the whole thing was damaged. My thyroid is entirely a different story here. MY THYROID IS FINE! I yelled in my head. It's my immune system that's not okay. Why are we not addressing this?
That's when I decided to take charge and direct my own treatment. The traumatic experience from my previous surgery taught me to speak up and advocate for myself! I learned to ask and research first, and be aggressive. I emailed Dr. M and said NO. She was very kind and approachable. She is also extremely capable. I am questioning the whole conventional system here, why is its approach not making sense in relation to graves' disease?
Before calling Dr. M, I delved through tons and tons of literature online to find similar cases and didn't stop until I found one - a medical abstract of a patient that was also allergic to Tapazole, but took it with antihistamine. It worked for that child. Armed with this knowledge I said - can I lower my dose and take antihistamine with it? Lowering my dose was my own call, I just trusted my gut with it. ABSOLUTELY was her answer. Let's try that, she said. I was thinking your hives were so severe that's why I booked you for radioactive, she added.
We lowered my medication to half the original dose, and I took Reactine with it because Benadryl didn't quite work. My hives before that point was still bothering me, but not after we went for the contingency plan. Three days prior to this, I was desperately chasing Dr. M by phone, pleading her nurses to have her call me back as my hives were getting worse. Can you feel me? Can you sense the hopelessness I was feeling at that very moment? I just needed to speak to my Doctor, why is it taking 3 days? I am so tired and confused and anxious, I said.
Dr. M, bless her good heart, gave me her personal cell number during that call. I couldn't believe what just happened! That never happens! Text or call me if this doesn't work and we will go for radioactive iodine, I will not cancel that appointment yet, she said. I said yes I will text her.
God was working, I just felt it. That cell number at my fingertips? Probably saved my sanity so I could tell you my story today. Thank you God for that miracle. Yes, the healthcare system where I am is broken. It's the system - not the highly skilled, passionate, hardworking people under it. I hate this system - and until you are truly sick, you won't experience the extent of its brokenness.
MY HEALING JOURNEY
So I stepped out of it. That's where my healing journey really started.
I went home in the middle of the day after my routine blood test. I emailed my Boss that I will take half of the day off because my symptoms were getting worse. I'm sorry that this has been so hard for you, I know you've been really struggling, she wrote. I hope they can help you sort this out. Take care, she added.
At home I emailed my NP and begged for a medical letter. I told her I cannot function at work and deal with this illness at the same time. I want to take a couple of months so I could focus on my health without worrying about anything else. This should now be my priority because if I don't do this, no one will.
My NP was so responsive, she immediately responded YES but I'm away can you wait until Friday? I said okay I will hang tough at work until then. No no no, she said - stay at home and I will get the letter done later today. This was October 17, 2018.
I sent it to my Boss with an honest email. I said my body is falling apart and it's affecting me mentally. She was very compassionate. I love this woman, who hired me several years ago, that then turned my life in Canada around completely for the better. God has been so good, so so good to me and my husband.
What happened in between that day and today, I will write about as a separate story. But before I let you go, may I say that: YOU are the authority over your own body. No one else should make decisions for you if you can make them yourself. BE ON TOP OF THINGS. This means doing your research, questioning everything, and advocating for yourself. If that means taking time off work like me so you can focus on your health, then do it.
Please do it because no one else will do it for you - you know your own body. Our bodies are AMAZING organisms. Give it a chance to heal itself, by using less invasive treatment if this is an option for you. It deserves that fighting chance.
That's what I'm doing here. And if you follow my story we will both find out together if healing naturally is indeed possible for someone with an autoimmune disorder like me. Take care now my friend, and keep on hoping!
Exploring outdoors and connecting with nature can tremendously help us heal.