(Written by Johna, Hashimoto’s Patient with Endometriosis)
“Great occasions do not make heroes or cowards; they simply unveil them to the eyes. Silently and imperceptibly, as we wake or sleep, we grow strong or we grow weak, and at last some crisis shows what we have become.”
When I first called this quote my own motto, I was unaware that how true the words would ring for me. I am torn between what I have become, and what I want to become. What I want to become is a good wife, mother, daughter, sister, and friend. But, because of you, every 24 hours I wake up and fall so short.
You know when things started to change. I was simply along for the ride. You know, you wreaked havoc on my body as a 19 year old young woman. There I sat, at an OBGYN’s office and listened to the doctor tell me that endometriosis took hold of her, and there were cysts on my ovaries. I had no idea what that was. You heard the doctor say I was going to need a hysterectomy. What is that? Surely if it were serious I would be in the hospital, right? Only you know if you had other plans for me.
Oh, yes, you were there when I was gifted with my two children. You also saw my future children ripped away from me at the hands of my disease. At 24 when my body began to tell you that I was going into menopause, you knew that the hormones I was taking were not produced by me.
You were there when the new doctor was astounded that I had gone 12 years without testosterone. You heard his snide remarks “Everybody needs testosterone. Your husband is going to love you.” You were there when I was overly aggressive, and decided I was better off without testosterone. I decided I did not need HRT (hormone Replacement Therapy). Had you already begun your destruction of my intimate time with my husband? Had you already begun stealing my passion away?
You were there when I had a successful back surgery, and you were there during countless hours in back and neck pain thinking that it was from degenerative disc disease. My surgery had healed wonderfully, so why was my neck and upper back in so much pain? Had you already begun to make yourself known? You surely had me fooled into thinking those annual epidurals were going to help me.
You have been there every single time I have eaten something and experienced so much pain in my abdomen, I was doubled over. You really had those doctors going. I had Ulcerative Colitis, and dealt with flare ups ever since. I could hide from everybody but you. As I would be shopping, at work, or an event with my kids I’d experience the horror of not making it to the restroom in time.
You were present and accounted for when my I lost my grandmother, and was put on anti-depressants to help me cope. You were there 3-years later when I found out that I would have to be on them for the rest of my life. You were around when I thought my vision was going, and saw the eye doctor, the ear doctor, and the dermatologist. Were you already attacking my vision, hearing, and skin?
Then, April 2009 came, and I found out after being tested for Lupus that, although you were there, you were dying. I was diagnosed with Hashimotos’s Disease—you were attacking my body. You had a nodule on you, which didn’t seem to worry the doctor at all. She found it when performing an ultrasound that same day. I remember leaving the doctor’s office feeling scared, but told myself it’s no big deal. Lots of people have hypothyroid, right? You were going to teach me the difference between the two.
One year later, I look back on not just this past year, but practically my entire life. I am feeling hurt and angry with you. After a trip to my family doctor’s office I learned that I am a walking heart attack with high cholesterol and the facing 3 potential autoimmune diseases. What is autoimmune disease anyway?! I mean, really? I am approaching 40. Is this part of the aging process?
I mean, you are not supposed to be driving and forget where you’re going or pause for a few moments because you forgot where you are. You’re not supposed to lose that passion and desire for your spouse. I mean, that’s all men think about anyway, so it’s supposed to be that way, right? Good grief, after a long day at work your supposed to be exhausted and just want to fall into bed at 7:30. And, everybody knows that the older you get the more aches and pains you have. Telling a story several times and forgetting what you were saying, and not finding the words to complete your sentences is just part of getting closer to 40….I mean, really, 40 is old, right?
My hands are supposed to be wrinkled and dry…. They’re old. My hair is supposed to be brittle, dry and fallout…. I mean, I have spent my life growing this hair. You’re supposed to require a “blankey” at all times when you travel, and a sweater and blanket at your desk. When you’re old, you get cold and run the little heater at your desk during the summer. You’re supposed to take naps and be moody, and feel ill…. Aren’t all old people like that? We all know old people eat prunes… well old people are constipated…. That’s probably why they are ill.
I am supposed to need glasses and eye drops, and have the TV turned up loud. I am supposed to ask what people said several times, and if there is a bunch of noise, I still do not hear them. I am supposed to smile and nod like I know exactly what was said.
Of course, everybody gains weight as they age, even if its 30lbs in a year….that’s just part of it. You’re supposed to look in the mirror and realize that your youth has faded away, along with your waistline and your sex drive. You’re supposed to sit on the front porch in your rocker and sleep in a separate bed from your spouse at the end of the evening.
And, that voice that use to caress your children to sleep and cause laughter as the car next to you could hear you at the stop light….its supposed to wither away, into a scratchy hoarse voice you hardly recognize.
Well, today I say NO…….NO, NO, NO, NO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am not old! I am not even 40, and even if I were; 40 is not old. You will no longer disguise yourself as old age. I have your number, and I am calling you out. What I have become, is because of the crisis of your death. It is your fault that my kids think they have a sick Mother. It’s your fault their friends ask them why their mom is always in bed. It’s your fault that I have missed precious moments with them I can never get back. It’s your fault parents think I am not involved in their activities because I don’t care.
Your apparent lack of producing what your supposed to produce has caused me to carelessly toss out words to them I cannot take back. You’re the one that has held my precious, passionate time with my husband hostage. You’re the culprit behind the image I see in the mirror. You have hidden the person my husband married and replaced her with a person he does not know or understand.
You’re the reason my immunity is not even tough enough to fend off a cold without putting me in bed for days. You’re the reason people at work wonder “How can she miss so much work?” “Nobody is that sick”!
You’re behind the constant drama in my life. You hit the green button on this rollercoaster ride and I haven’t been able to get off. You’re the reason my shoulder blades and neck constantly feel like they are being pinched. You have put me to bed many times, in a cold, silent, dark room to fight off a migraine. You are behind every time I have had to change clothes because of an accident. You’re the reason that my daughter and husband get to see the laundered clothes in the sink. You’re the one I have to thank for the pain and exhaustion I feel after exercising. You’re the reason people think I am fat and lazy. You actually had me believing that myself. You’re the one that puts me in bed after cleaning my house. You’re the reason my husband and daughter are left to take care of most of the house work.
You’re the reason I cannot finish a complete sentence and waste countless hours walking back into a room because I forgot what I had gone in there for. You are the reason for the panic that comes over me in those few moments when I am disoriented. You’re behind the fear I have when brushing my hair, shampooing it or blowing it dry. You have even seen to it that when I wear my hair in a ponytail it breaks off and falls to the floor. Your slow dying death is the reason I choke easily on my food and drinks. I have constant dry mouth and dry eyes that you have made impossible to hydrate.
Your hold on me has turned into feeling like somebody has their hands around my throat or is pressing on my throat and swallowing is uncomfortable. You’re the reason that the pretty necklaces that my husband has bought me sit in my jewelry box, and not on my neck. You have seen to it that I am miserable when wearing them, or even a shirt that is close to my neck. You’re the reason my knuckles have begun to enlarge and ache as I work on my craft projects. Those same knuckles you have inflamed have, on occasion made it difficult to get my wedding rings on.
I could go on and on with the ways you have sought destruction in my body and mind. You are dying a slow death. As this funeral approaches I am equipping myself with the knowledge of your disease. I am seeking answers and becoming an advocate to inform others about your tirades. I am making certain that family members have been provided with the information that your disease could be inherited.
I am slowly accepting the image you have left me with in the mirror and changing what goes into my body and mind. You have brought me to a place where the most important thing to me is my family.
I am slowly learning that not everyone will understand my trials, and there will always be ignorance. I am at the beginning of assuring myself that it is alright for others to think, oh well it’s not so bad. She just needs to do this, and that, and gosh she never does anything, she cannot feel that bad, or whatever else they decide to vomit out of there ignorant mouths.
I am at the beginning of this journey and telling myself each step of the way that its alright to feel the way I do. I am also slowly teaching myself to take advantage of feeling good. I am learning what really is important in life and what unconditional love is all about. I will continue to strive to be happy with the image you have given me to look at in my mirror.
I am learning that being a good wife, mother, daughter, sister, and friend is about taking advantage of what you have been given and conquering.
I have resolved to be a fighter.
I am learning more every day to be compassionate of others. I have also become a protector.
I will use my knowledge to protect my daughter from your ugly fate, just in case you decide to pass down your crisis to her. She is a fighter, and will not come out a coward because knowledge is power.
I will close this with the words I started with: “Great occasions do not make heroes or cowards; they simply unveil them to the eyes. Silently and imperceptibly, as we wake or sleep, we grow strong or we grow weak, and at last some crisis shows what we have become.”
Rest in peace,
Shades of blue
(Bio) My name is Johna and I have Hashimoto’s Disease, diagnosed 1 year ago in April. Dealt with Endometriosis at the age of 19 and had a complete Hysterectomy by the time I was 24. Several years ago I was diagnosed with Ulcerative Colitis. I have also been informed this week that there is other autoimmune disease showing up in my body. I joined your Facebook group this week and became a member of the DearThyroid Community. Again, I want to say THANK YOU for being such a wonderful support system. To write this letter was difficult and started a healing process for me. The letter and comments that I have read have given me comfort and assurance that I am not alone. There are others that are walking down this path and taking this journey with me.
Tags: autoimmune diseases, Dear Thyroid Letters, difficulty getting pregnant, endometriosis, Hashimoto's diagnosis young adults, Hashimotos patients, hormone replacement therapy, hypothyroidism, literary community, ovarian cysts, pregnancy thyroid issues, thyroid menopause, thyroid nodules, thyroid support, thyroid symptoms aging, ulcerative colitis
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