Guest Post by: Jessica Torczon
I sat in our nursery, in the carefully chosen light gray rocker, with my feet up on the matching ottoman at our normal 2:45 AM nursing time. I watched my son fall back to sleep after nursing ambitiously, like normal. The last five weeks of getting to know this little guy had been bliss. I closed my eyes and considered just sleeping here in that cozy nook of ours. Quickly my thoughts became distracted. The nagging, radiating heaviness in my back. Then the thought occurred to me: my pain had returned. I couldn’t remember the last time I thought about my lower back and my daily pain. Then a thought I never had before, Is it normal to always be in this much pain? I had been living with it for so many years, at least 12 years and I must have forgotten what it was like without the pain. Funny.
That pain quickly became nominal to what I would experience two weeks later. My right knee felt like an over inflated beach ball ready to burst. It wasn’t the pain that woke me, it was my son stirring for our early morning date. I hobbled down the hall like Captain Hook, kicking my leg out as I walked because my right leg didn’t seem to want to bend. The stiffness in my knee was new, raw and upsetting. Maybe it was the lunges and swats I had started doing since I was cleared to workout the week prior at my six week PP appointment. I hobbled back to bed and tried to focus on everything else besides the throbbing in my knee. The next morning, my husband helped me down the stairs and got me settled in the family room; a change of baby clothes, extra diapers and wipes all so that I didn’t have to go back up the stairs.
My OB’s office advised I could safely take 600 mg of ibuprofen three times a day to ease the pain and swelling, and added no more exercising. The next four days I would wake to find a new part of my body red, swollen and throbbing. I didn’t start to get scared until I realized the pain spots were circulating my body throughout the day. I told my OB’s nurse that this isn’t normal, that none of it felt like I had hurt myself working out. I stopped taking the ibuprofen because it wasn’t touching my pain. My OB had me come in to have my blood drawn to check my thyroid (I had thyroid disease since I was eight years old and it was a teeter totter of a balancing act during the first two trimesters of my pregnancy). So at eight weeks post-partum they checked my levels and my TSH (thyroid stimulating hormone) had skyrocketed. An adjustment to my medication was made, which sent my body into a flurry of havoc.
“The feeling of being a burden was starting to creep in.”
I was back at work, emotionally overwhelmed, lonely without my lil’ buddy, and I was in pain. My mobility was becoming limited for longer portions of the day. Steps were my enemy; thank goodness for sturdy railings!
The feeling of being a burden was starting to creep in. Maybe another Epsom salt bath will do the trick. Maybe this $60 bottle of vitamins will help. Maybe sleeping with my legs elevated will help. Maybe, maybe, maybe…
Wednesday, March 16, 2016 10:30 PM, I was in the emergency room. When asked by the admittance desk what brought me to the emergency room, I choked out through tears, “I am just in pain.” As the admittance process started I was engulfed in exhaustion and frustration; the simple task of getting my insurance card and driver’s license from the slots of my wallet was a task I couldn’t complete. I attempted a joke that my hands had forgotten how to work, and then I quickly thought, would they work again?
After x-rays and bloodwork, the word Rheumatism was acknowledged but not confirmed, those tests would take weeks for the results. I would need to see my primary care doctor to get those tests ran. They sent me home with a prescription for pain killers that I couldn’t take while breastfeeding and a message of good luck and congratulations on becoming a mom.
I had spent so many hours Googling reading articles and message boards and nothing ever mentioned the post-partum period being a pinnacle time in a woman’s health that can allow Autoimmune Diseases to surface. And mainly because I didn’t know the word “Autoimmune;” it was a word I never knew before that night.
I saw my primary care doctor that Friday, she drew several vials of blood, put me on a steroid taper and said, “No more Googling!” The following Tuesday I received the message that my Rheumatoid Factor (RF) was 113 when anything above 15 can be considered a positive for a Rheumatic disease. She calmly stated that an appointment with a specialist had been made on my behalf for eight weeks later.
The next two months would be a whirlwind of doctors’ appointments, bloodwork, steroid tapers, celebrations, research, alternative therapies, more steroids, milestones, health insurance nuances, secrecy, many tears and prayers, so many prayers.
And this is where my story is as of January 2018.
I am currently managing two Autoimmune Diseases (AI) (note: if you have one AI, you are 25% more likely to develop other AI conditions, some research says up to seven AI in his or her lifetime [1]):
Rheumatoid Arthritis (RA)–where the immune system mistakes the joints as foreign and attacks the bones and tissues of the joints resulting in swollen, red and stiffness
Hashimoto’s–where the immune system mistakes the thyroid gland as foreign and attacks it resulting in underproduction and the gland being destroyed
And my original condition Hypothyroidism—where the thyroid gland is underactive and isn’t producing enough of the thyroid hormones
I had no idea that my health history could have presented me with the challenges I am now facing. My OBGYN didn’t recommend additional markers to test for during or after my pregnancy because I don’t think she knew, and was following protocols from the 1970’s. It was my primary care physician who had to tell me that I had drifted into Hashimoto’s Thyroiditis based on the markers she tested based on newer protocols from 2013.
All of this can be a lot to handle at times, but I am throwing everything I can at them while I can. I employ a combination of conventional medication, nutrition modifications, a supplement regimen, alternative therapies and lifestyle modifications.
Some days are still a challenge, and I am coming to know my body that I can feel shifts coming on, and I try to stay ahead of them. I am still considered early diagnosis, so I know that things could get worse, so I feel blessed for the limited limitations I have so far. The guilt of being a burden lingers, but communication with my husband has been key to making the difficult days easier.
“I Want other women to get to know that voice, that feeling, and go with it.”
Meme cred: Real Simple
Through my research, I feel I have a better handle on the tests I would have ran if I become pregnant again, what alternative therapies I would use, and arrangements I would make for my post-partum care (can you say “post-partum doula?!”). I have also come to trust and act on my intuition. And I want other women to get to know that voice, that feeling, and go with it. A silver lining to my story at this point has been my developed sense of self-advocacy, which has translated to the decisions we make for our son.
If this describes you, or even if a small portion of this speaks to you, I urge you to keep pushing for answers. Anyone who has been labeled a hypochondriac, who has symptoms with unknown causes or correlations; keep fighting. Chronicle your daily symptoms with your daily activities, food and/or stress because it can be a helpful diagnostic tool (and make you feel less “crazy” when you can see it all out in front of you)—there are apps that can make it so simple to track.
I have included some resources below that helped me on my path, and my hope is that it helps someone else (and when doing your research, always look for sources to back up what the article is presenting). There are functional and integrative approaches that are willing to look for the root cause of your chief complaints. I truly believe that the body was created as a whole, and not meant to be treated separately in these cases.
I wish you all support, intuition and love. Thank you for taking the time to read my story, and my hope is that together we can spread the word for continued improvement in women’s health advocacy.
P.S. a huge shout out to my husband who has been upholding his vow of in sickness and in health with a grace, strength, humor and support that I pray everyone could have in their life.
Jessica Torczon is an Omaha native and lives about a mile from where she grew up. She can’t imagine raising her family anywhere else. Speaking of her family, she is blessed to be married to her husband, Dan, and they have a beautiful, independent, rambunctious two year old boy. She works in Marketing and HR for her parent’s printing business. At their house, they cheer for the Huskers and the Bluejays!
Additional Resources:
http://www.phoenixhelix.com/ – her website, recipe roundups and podcast propelled my knowledge to starting to seek better care for myself. She also has RA, so her story really spoke to me.
https://hypothyroidmom.com/ – her story really spoke to me about reproductive fears related with thyroid diseases. Her research has also given me one of the tools I would use if I become pregnant again.
http://grazedandenthused.com/ – she has Hypothyroidism and chronicled pieces of her pregnancy and post-partum period on her blog. Her recipes are delightful J
https://wellnessmama.com/22689/autoimmune-diet/ – I first learned about the GAPS Protocol back in 2015. I didn’t realize in 2016 I would be turning back to her site for more information on Autoimmune disease management.
http://www.healthywomen.org/content/blog-entry/10-signs-you-have-leaky-gut%E2%80%94and-how-heal-it
https://draxe.com/7-signs-symptoms-you-have-leaky-gut/
https://www.aarda.org/diseaselist/ – lists 145 confirmed Autoimmune Diseases
http://www.autoimmuneregistry.org/the-list-1/ – lists 156 confirmed or suspected Autoimmune Diseases
Reference
[1] https://hypothyroidmom.com/autoimmune-diseases-brew-in-your-body-for-years-before-diagnosis/
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