As most of you know, we have three kids-just had one to turn 18 last week, unbelievable! This blog is a little different this time. It ties back to Dravet, but about my personal health journey. Several years after giving birth to Ava, my hair starting falling out…again. By again, I mean after giving birth to each of the children, I lost a fair amount of hair from hormonal changes for several months after their birth-day. So when my hair started randomly falling out for an extended period of time when Ava was around 3, I became concerned. Thankfully I was blessed with a very thick mane, but my pony tail was shrinking & I did not like it. I checked in with my Nurse Practitioner who checked me for anemia, thyroid, & vitamin deficiencies, all was good. I was told this was normal after having kids, but I found it hard to believe that 3 years later after my last birth, this would still be going on. Not only was I losing my hair, I was extremely tired. Now being tired I did brush off as being the mama of a three kids & one with extreme special needs who never got to rest well due to seizures, which meant neither did I.
Not to brag (but I am lol), I never was one to have a weight issue, I have always loved to eat-but I loved good for you food, even as a baby. I’ve heard my Mama, Daddy, & sister tell stories of how I would crawl into the kitchen cabinets to eat raw potatoes & onions! When Daddy would take me to The Pantry (a famous gas station/hangout in Ellerbe) after school, my snack of choice was always hoop cheese-not a candy bar or chips. Now, I had to wash it down with a Pepsi-what good Southern girl wouldn’t? I’ve never had a sweet tooth, rarely do I eat ice cream from The Berry Patch, I never eat birthday cake (not even on my birthday), drink mainly water, don’t eat breakfast, I eat two meals a day, & if I snack it’s on fresh fruits or veggies. I totally dislike fast food, processed food, even bread. I was the teenager that when I went out with my friends, I was the one getting the turnips greens, salad, & squash! When I am forced to eat fast food, I feel so guilty & definitely not satisfied.
When pregnant with all three of the kids, my weight gain during pregnancy was under 20 pounds each time. Coleman, Jack, & Ava were all fairly large babies with Coleman being “Boss Hogg” at nearly 10 pounds. I was back into my regular clothes soon after birth with all three. When Ava was around 6, I started gaining weight despite healthy eating habits & walking 4-5 times a week. During my yearly doctor visits, notice I said visits because this occurred more than once, I would voice my concerns to my doctor/practitioner. The chief complaints were once again hair loss, tiredness, & then weight gain was added to the list. I would tell the health experts, I really don’t eat bad. I know they thought, yet right, she’s a hog!
Now I knew something was wrong with my thyroid even though I had been tested many times & the tests always came back normal. There is such a high prevalence of thyroid disorders on Daddy’s side of the family. He has 8 siblings of which four have thyroid problems along with his Mama having issues too. Finally, after years of knowing in my gut something was wrong with my thyroid, my NP ran a different test to test my thyroid antibodies. This test revealed I have Hashimoto’s thyroiditis, also known as autoimmune thyroiditis. Basically, my immune system created antibodies that damaged my thyroid gland. I was sent for an ultrasound of my thyroid that showed I have a goiter (this always makes me think of the Seinfeld episode when Elaine sat with an elderly woman who had a HUGE goiter) & nodules on my thyroid. I wasn’t scared when I got this diagnosis because I was/am fairly well informed about it since I had suspicions all along I had thyroid issues. Being a self-proclaimed holistic physician, I decided not to go on medication to treat at the time, nor am I currently on medication. Instead, I went the holistic route. Diving into reading about the gland that controls so many functions in your body, I started a regimen of supplements & vitamins various experts recommended. Since then, my hair loss has drastically stopped & the overwhelming fatigue has improved. Sadly, none of the natural treatments have helped reduce my weight. Your thyroid helps regulate body temperature & I am always cold-unless I’m working at The Berry or playing softball, it controls your metabolism, can cause heart disease, & much more.
I learned that this condition runs in families so I had a predisposition to develop it. I learned that chronic stress can cause this disorder. It’s amazing how destructive Dravet is & other chronic illnesses. It not only affects the person diagnosed, but all involved in the care. I can’t tell you how many times I have been startled out of a deep sleep to hear Jack in a seizure in the middle of the night or most often early in the morning. At one time during Jack’s worse period, he had up to 40 grand mal seizures in a month & these were mostly during sleep hours. Cortisol & adrenaline levels rise during stressful times & we have had more than our fair share, turns out continued exposure to heightened hormone levels is not good for the body. It is known that chronic stress can cause disease, just wish it could cause me to lose weight!
In writing this blog, I hope to bring awareness to stress & what it can do to the body. No matter how strong or young a person is, caregiving is stressful & really does take a toll on the body. Hashimoto’s can take years to develop-I’d say it started about 16 years ago for me. Do I think I would have developed this condition if Jack did not have Dravet, I’m not sure since I do have a strong family history, but I do think it would of developed at a later age. Since The Berry Patch has gotten busier, my ability to exercise has gone down the tubes. Lee often doesn’t get home until dark (I have to wait on him to walk so he can stay with Jack). I prefer to exercise with friends like walking & by then, it’s too late for others to walk & I hate exercising in the house. I never have enough room, the youngin’s come in & laugh at you, & frankly, it’s boring.
As I type this, I’m listening to Jack blast music in his room at 12:37am & I am patiently waiting for his sleep medicine to kick in (another stressor). I am working on medication weans this week. He has been on Topamax for 12 years & I am working to try to reduce the medication and/or completely wean him off of it. It can cause negative behaviors, but was recommended for seizures & when your child is having 100’s of seizures a day, you will do or give anything to make them stop-in Jack’s case, Topamax did reduce the seizures somewhat. The wean must be extremely slow since he is very sensitive to change & we need to know what is & isn’t working for him.
If you too are have Hashimoto’s (the name sounds worse than it is) & have a personal story, tips, or suggestions, please pass them along. And if anyone has this & would like to know my supply list of supplements, message me. If you know of anyone that is a caregiver, volunteer to help out-you might be saving their life because you never know how stress is going to affect someone.
One thought on “Hashi what???”
Amy , my heart breaks for you and Lee….and also for Ava & Coleman! Krissy began having seizures at age 13….idiopathic! She has an identical twin sister….thankfully she doesn’t have seizures! They are now 40!
Nothing has stopped the seizures, not even 2 neurosurgeries! I’ve had to learn to just ignore being cursed.
Now after being diagnosed with FOSMN in 2014, I see just what stress will do!
You are continually in my prayers!
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