My usual stuff on Country Cottage Living has to do with “lovelies” and such but today I needed to share a difficult part of my life so that it may help someone in need.
So, I’m writing my story for those who need encouragement. Maybe you googled Graves Disease and found yourself here. You are not alone.
Symptoms started in January 2013 and got worse till I was diagnosed in late March at a walk-in clinic.
Symptoms included muscle weakness ( I had a hard time climbing the stairs or getting up off the floor), very low energy (I had 1 to 2 hours of energy activity a day), couldn’t tolerate heat, had nausea, tremors, anxiety, sudden bursts of anger, unexplained crying, sweating, high heartbeat (my heartbeat was 120 – 140 beats per minute; 90 beats per minute is the highest healthy resting heartbeat) and trouble sleeping. I was never in pain just felt uncomfortable. I had trouble driving more than 10 minutes and needed help with errands like grocery shopping. I prioritized my time and tried to cook something each day and my family cleaned up the house or it didn’t get done!
I was lucky for several reasons, my illness got diagnosed right away and my eyes didn’t bug out. I was told my case was close to extreme. I believe if it had got any worse, my eyes could have bugged out. I think I remember reading this is harder to treat. I had not really heard of hyper thyroidism (Graves Disease). I knew lots of folks had hypo-thyroidism (low thyroid) but I had not heard of “hyper” (high thyroid). I was also lucky to see several doctors who cared about me and did their best for me. I was blessed to be able to live my life but to a much lesser degree of energy. I spent a lot of time in bed (with my 2 sister cats to keep me company).
Leading up to my illness I remember feeling overheated and nauseas at times when we first moved in our rental farmhouse. In January, I started cycling between a few days of good energy and then a few days of needing complete rest. Also leading up to my illness, I was not handling stress very well. My parents and my brother both went through a divorce about the same time. My father became mentally ill. Then my mother came to live with us for 2 years. My husband was working a full time job plus a very busy side/weekend job that required much attention. Our landlords became unreasonable and my kids were entering the teen years. In the middle of my illness I knew many stressors were going to have to come off the list. One by one, we transitioned our life while I was sick. This was not easy but the result was a lot of peace.
When I went to the walk in clinic having no idea what was wrong with me I was very anxious but I wanted the Doc to know that this was not merely a case of anxiety or panic attacks. I had rehearsed all my symptoms and made sure my Doc knew that this wasn’t a case of Anxiety. When the labs came back and my illness was diagnosed I was relieved then wondered what to do next. I went to my longtime naturepath and she gave me only a couple options. Take these herbs that costed about $200 a month which “may not help.” or have surgery. Since I had no idea what to do, and I generally like to try the “natural route” first, I started on the expensive herbs. I left her office with her opinion that in 6 months I’d probably opt for surgery as most of her other patients. I remember telling my mother who thought that was the most ridiculous advice and certainly there were other better natural options. My mother was my sounding board for ideas, lab reports and she offered hours of her own research and “natural” advice.
I will never know for sure why I got sick with this illness. But thyroid issues do run in my family and at some point, I had also struggled with low thyroid although I really hadn’t been treating it or getting it checked on. My naturepath, who I’ve seen on and off, since I was 16 may have been accurate in saying that she believes my thyroid had been cycling for years (has been unhealthy for years) and probably caused my mood issues over the years.
So, then between April and September of 2013, I tried several different combinations of herbs, another naturepath (whom I loved and he called me back personally without billing me almost every week), I bought a Blendtec to make Green Smoothies (which were quite tastey), and I went on a exteme cooked vegetable diet (which I only was able to tolerate a few weeks). All the while, getting my labs done regularely, researching cures and treatments and losing weight. My labs pretty much stayed the same and then they started to get a little worse.
I saw an endocrinologist in Everett, WA in July who advised radioactive iodine. He made it sound easy. I was queasy at the idea. Also, at some point during this time, I tried the medical drugs prescribed for hyperthroidism. I did not tolerate any of these. I got a rash and could barely stand up (can’t remember what they were called). Apparently, these meds help some people get their thyroid under control and their illness goes in remission.
During this time, my lifetime faith in God hit a wall of grief and doubt. I held onto the truth that even “a small mustard seed size faith can move mountains.” I held onto this knowing I was small, my faith was small, my future very uncertain. I felt alone even though my family and friends were in my life as usual. I’m so glad my friends stayed around, laughed with me and helped me when I really needed it. But I spent so many hours in bed sometimes sleeping, sometimes resting and sometimes I was unsure if my husband, family or friends really knew the depth of my frailty. I found myself telling my husband I would love to get up and do so and so but I just can’t. In September, when I realized I could be facing death sooner than later I wrote out a letter to my family and friends with a special message to each one. I put it in my nightstand drawer and told my friend where it was just in case. My friends and family seemed to go on with “life as usual.” and I felt like I was in a different place. This alone feeling would have been much worse if I had not known, through my whole being, that God was with me and would never leave me. But faith that I would live and get better was not totally there. But for some reason I usually held on to hope. Hope for another idea or another doctor that might help me. If I had faced a certain death or a terminal illness, I would have had to cling to God alone and the Hope of spending my eternity with Him.
In September, my naturepath said I needed to do something soon because he was afraid I might have a heart attack. I then saw a local endocrinologist who also scared the bejeebies out of me and said very seriously that I could die of a heart attack or “thyrotoxic crisis.” He wanted me to have surgery as soon as possible. I met with the surgeon, who I really liked, and I felt at peace with all I had tried and this final extreme option. The endocrinolosist wanted to get my heart rate down for surgery and give me something to lower the swelling in my thyroid. If these meds were successful this would enable for a smoother surgery. Again, my body would not tolerate any of these medications and I got a rash with both. According to my doctors a rash was a bad sign for these medications and I was to stop immediately. (I’m sorry I can’t remember the names; email me with any questions. Be sure to see a good doctor and get all your questions answered. Everybody is different and different things work for different people.)
My surgery was scheduled for Oct. 16, 2013 and I was ready but scared that I was going in cold turkey and was nervous about complications since I was not on the 2 meds. We moved on September 20 to a small low maintenance home. It took all our friends, family and more to help get us moved and clean the old large farmhouse. We knew we had to go for more than one reason but we were saying goodbye to a dream. Living the dream included a home in the country, acreage, a farmhouse, a shop for my husband, pets, a home big enough for my mother, a vegetable garden, a tree swing, a view of Mt. Baker, a front porch and the possibility of me having chickens.
But at the same time we knew we had to say goodbye to the larger bills that come with a large old farmhouse, a wet and moldy basement, a large shop that meant Daddy working every day of the week, a time-consuming yard, flower beds and veg. garden that I was physically unable to maintain. My mother needed to start her life over somewhere else which she has successfully done. We needed different landlords. We let go of our family pets; 2 sister cats we’d adopted 5 years ago. It was definitely a time of transition. We were also financially strapped and needed financial help just getting moved and putting a down payment down for my surgery. Thanks to the family members who helped generously.
and Part 2 will be next about the weeks before surgery, surgery itself and post surgery.
Just a sidenote: I watched a lot of Netflix or library DVD’s of series that now mean a lot to me. I watched Doc Martin, a PBS series, a couple times and Heartland was also a favorite (this is a Canadian series). I also made time to do a little bit of what I really loved: garage saling and tending my antique booth at Penny Lane. As long as my friend was driving, I could garage sale for a few hours. This was the highlight of my week!