>> Thursday, November 1, 2012
What I wish I'd been told when I was diagnosed with Hashimoto's
When I was diagnosed with Hashimotos I wish that the doctor had taken some time to explain to me exactly what having this disorder would mean.... that in essence my life as I knew it would change forever...that it was an autoimmune disease (and what an autoimmune disease is)...that it would be a lifelong illness...that it would go hand-in-hand with other disorders (and some autoimmune diseases) which would complicate efforts to treat the thyroid (such as psoriasis, diabetes, irritable bowel, polycystic ovarian disorder, gluten intolerance and other food allergies, adrenal fatigue, ADHD, anxiety, and candida). The blood tests seem, for me, to be useless. I have regularly been so sick I cannot function, yet still had the bloodwork turn out in the "normal" range. The best thyroid doctor in my area threw up his hands and didn't know what else to do for me. I have not found a list ANYWHERE that can do justice to the amount of chaos this disorder had caused in my life
This is the "unofficial" symptom list. This is how it is affecting my daily life. I am slowly getting getting better.
--Some days I am so weak I can barely walk; on really bad days I cannot stand.
--I get random hot and cold sweats, usually combined with dizziness... even when I am on a supplement
--I cannot take synthetic supplements, my body doesn't accept it. What I do get is all the side effects. Joy.
--Despite the fact that I have an IQ over 140, some days I cannot think with enough clarity to boil an egg... things you normally wouldn't have to think through, like which pan to use (you'd instinctively grab the right one), where the fridge is located in the house, where the eggs are in the fridge, etc. Things I normally know instinctively I cannot remember. I actually had one day when I wasn't sure if I was supposed to stop on the red light or the orange. I simply couldn't remember. Imagine trying to run a house, homeschool, and pay bills like this.
--I have so much trouble sleeping that I am bordering on sleep deprivation. All it takes is one night of not enough sleep and I am like a completely different person.
--Because Hashimoto's causes thickening of the skin and tissues, I had to have carpal tunnel surgery on both my hands when I was 31. The surgeon told me he had no idea why my hands were so bad. His words were something like "Worse than the 90 year old ladies I treat." Now I know... thickening of the tissue due to the Hashimotos. I was nearly diagnosed with diabetes because of numbness in my feet and stiffness in my ankles. Same issue. Thickening of the tissue. Oh, and when I had my surgery, they had to poke me 8 times before the I.V. would lace. My blood vessels are also very tough-- all the cause of this disorder.
--My house looks like an episode of Hoarders. That is an exaggeration to make a point. It is getting better, but I cannot manage my families things because I cannot think clearly. To add to the trouble, since I have so low energy, when I have a burst of energy, I tend to go "stock up" on what I think I will need. The thinking is that then I will have it when I need it. However, by the time I get home from my stock run, I am so wiped out I cannot think clearly enough, nor do I have the energy left, to organize and put away items. The result it half finished projects and piles of supplies.
--I almost had my children take away from me because of the condition of my house. I do not choose to live like this. I am just so sick. I am doing the best I can-- cross my heart and hope to die. I am seeking treatment from an alternative medicine doctor and am improving! I am feeling better than I have in nearly 8 years, but it is a slow process. Because of the above listed symptoms, I am not able to manage my home very well. If I cannot remember when I keep the silverware, how am I supposed to remember to tell my son to put his coat away?
--On the days I am feeling better, I get REALLY angry. Angry at life. Angry at God. Angry at doctors. Angry at my husband for not doing more. Angry at my kids for being disorganized kids (but I haven't really been able to train them to be otherwise). But mostly angry at myself for being such a bad wife and mother (that is what the "voice" in my head tells me), for not doing better, for not living up to expectations.
--I am jealous of those who are able to see what they want and go get it. I remember being like that. It was a long time ago. But I still remember.
--I have continually been misjudged. When I first started seeking treatment, I was told by a pastor and his wife that what I needed was to read the Bible more. Now I am not saying that the Bible ISN'T a good idea. But you don't treat a broken arm with a Bible verse. It may comfort a person who has a broken arm, but generally it doesn't make the broken arm go away. Because of the condition of the house, I have been judged as less than a good godly woman. Even by those I love dearly. I have nearly stopped having people over to the house. I don't have the energy to get it presentable, and don't have any desire to deal with the judgments of others. If I set a date and trust the adrenaline to work for me, I end up with adrenal fatigue. Last time that happened I slept for almost 5 days straight. I had someone close to me tell me that, if I could not find a way to take care of my children properly, they would take the children and care for the properly "for" me (a veiled hint at taking the children from me).
--I usually cannot schedule more than one thing in a day. If I have a doctor appointment, I cannot focus on homeschooling that day. My brain doesn't have the extra energy to multitask.
--I was surprised when my dr said that when one of her patience is diagnosed with Hashimotos, she has a meeting with the family and tells them that the family will either have to do the work that the diagnosed member has been doing or they will have to hire a maid (if it is the wife) or find an alternate means of income (if it is a "working" member). She said that, until the hashimotos is properly treated and under control (I am still trying to figure out what that means), the diagnosed person cannot be expected to perform any of their "normal" duties. That is yet another thing I wish someone had told me when I was diagnosed with Hashimotos. Would have saved me YEARS of heartache.
--I have ADHD, but sometimes wonder if it is actually just the Hashimotos....?
I will add more as I think of it. It helps me to write it out. Maybe this list will encourage others who find the "official" lists greatly lacking in content and clarity.