This article kicks off a series of interviews with chronically ill people who are using their jobs to raise awareness for and improve the situation of others with chronic illness.
This interview is with my good friend Lori Callahan, founder of the jewellery company Dancing Wire and Beads. You can connect with Lori via her personal Facebook page, check out her gorgeous creations on Facebook or Tweet her on Twitter.
Sarah: First off, could you please tell me a little about your illness, how it impacts your everyday (professional and private) life and any words of advice you would give to others who are chronically ill?
Lori: I have autoimmune thyroid disease (Hashimoto’s), which causes hypothyroidism and I have to take desiccated thyroid hormone every day, as well as avoid certain foods and take supplements. The immune system attacks the thyroid gland and the resulting inflammation causes an underactive thyroid gland. Hashimoto’s is the most common cause of hypothyroidism. I never knew how life-altering thyroid disease could be and how important the thyroid gland was until I was diagnosed. It controls every organ and system in the body and when it doesn’t work correctly the symptoms it causes wreak havoc on one’s life, both personally and professionally.
It’s very important to be diagnosed and treated properly in a timely manner, but unfortunately this is often not the case, which is what happened to me. Because I went so many years without the correct diagnosis, my symptoms progressed to the point where I could no longer work and could barely take care of myself because I slept most of the day, suffered from exquisitely painful neuropathy, muscle pain and weakness, which made it difficult to walk and I had to use a wheelchair if I wanted to go to a store. I had uncontrollable weight gain, cognitive, memory and mood difficulties, and the inability to drive because I would fall asleep at the wheel, among other typical symptoms.
The autoimmune part of the disease, which is the cause, is not treated by mainstream conventional medicine. However, if a person has autoimmune thyroid disease they often have food intolerances and/or allergies, and other hormone imbalances and deficiencies. Common food intolerances and allergies are to wheat, gluten and dairy, but I know many who have other food intolerances in addition to these.
Basically, I missed out on being able to participate in life for far too long. Some of the worst memories of those days, aside from the physical pain, were missing holiday meals and spending time with family, memory problems and struggling to find the energy just to get dressed.
Thyroid diseases and cancers are hugely underdiagnosed and undertreated, and very much on the rise. This is an international problem, not just where I live in the USA. A large percentage of people struggling with symptoms of hypothyroidism and hyperthyroidism come to suspect thyroid disease long before they are diagnosed because they are forced to start looking for answers on their own. My advice would be to listen to your instincts and trust them. If your symptoms are interfering with your daily life and you are not functioning well, it means something is wrong, even if blood tests say otherwise. Reach out for support and educate yourself. There are many good websites, forums and blogs on the Internet to help you do that, and there are also good books available.
Sarah: You use your job to improve things for other people who are chronically ill – what gave you the idea to do this and could you tell me a bit about how you do this?
Lori: I have always felt raising awareness about illnesses/diseases and disabilities people deal with was important long before I became ill. I have had a talent and passion for creating jewellery since I was a teenager, but a couple of years ago when my sister and her teammates were having a benefit to raise money for the annual (two-day, 39.3 mile) Avon Walk for Breast Cancer – Boston, I donated a pair of earrings to be raffled that I hand-forged out of sterling silver in the shape of the well-known awareness ribbon and added pink Swarovski crystals. This is what led to the idea to use my talent to help raise donations and awareness for different organisations. You can see more detail about this under the “Info” section on my Facebook page.
Sarah: What is your motivation for doing this? How does it make you feel?
Lori: The motivation is simple – there is a need and I have the ability to help in some small way with raising awareness and contributing with donations from a percentage of sales of awareness jewellery. With awareness comes knowledge and hope, and myths are dispelled. It feels good to pay it forward!
Sarah: What do you ultimately hope to achieve by doing this? What do you wish would change for those who are chronically ill?
Lori: I was only rarely able to make jewellery for a long time because of being ill and only returned to doing this regularly about six months ago. Ultimately, I hope to become involved on a larger scale in helping raise awareness. As time goes on, I’m sure the answer to that will unravel as it should. Aside from better diagnostic tools and treatments, I wish that conventional medicine would take a more holistic approach to treating chronic illnesses and look beyond the often narrow treatment protocols that most make available to patients. Most chronic illnesses are invisible, which makes it difficult for others to understand how the ill person’s life is affected and can change from day to day, which sadly for some leads to strained and sometimes ruined relationships. I wish and hope with better awareness this will improve. When a friend or family member is ill, it affects everyone involved.
Check back tomorrow for our second interview and let me know if you would also like your business to be featured as part of an interview!
This is a great article – I saw first hand how difficult your life had become trying to get proper diagnosis and dealing with all of your physical disabilities.
You did a wonderful job researching information via websites, forums, blogs, and books – basically becoming your own advocate and being persistant on answers.
It’s amazing to me how you finally ‘diagnosed yourself’- than found a great doctor whom actually listened to you and went forward with proper treatment.
You still struggle each day – but you are very in tune with your body and what it needs.
You are an amazing woman and very inspiring, thank you for sharing your experiences and knowledge.
I agree – Lori is amazing and I’m proud to call her my friend! Her knowledge of illness has truly amazed me and we have often ended up putting our heads together about certain things. I find it inspiring how Lori has in so many ways healed herself through her research and the right steps when so many doctors were unable to.
Cindy, thank you for your kind words. Unfortunately, I was not alone in my struggles as so many with this disease have similar obstacles to good care and treatment. It’s mind boggling why medicine is so far behind in diagnosis and treatment, and in recognizing there is not a one-size fits all approach to treatment.
miss lori!!! i salute you! you are amazing, you are talented and have a heart of gold. i can’t think of a better person to be in the front of the effort to raise awareness. as a fellow hashimoto… thank you and sarah for this great article.
Thanks for commenting, AJ! One day the three of us will have to get together:-).
Thanks so much Anita! You’re pretty amazing yourself; you continue to inspire me, and i know many others, so Thank you!
Hello Lori, hello Sarah,
Great interview. It is so important to let people know about these chronic thyroid diseases. I lost my thyroid to surgery after I heard the dreaded “C”-word; and as you Lori, I had no idea what this small butterfly gland does in ones body. It is an extremely important regulator for so very many functions.
And as was said in the interview, many doctors have very poor knowledge about the symptoms and correct treatment of this growing illness. Awareness is also needed for those in the medical profession.
May your lives be well balanced always!
HD in Oregon
Thanks, HD! You’ve really been through the mill yourself and sometimes it isn’t until we ourselves suffer that we realise how little awareness there actually is for certain illnesses. It is very sad, but on the flipside there are people like Lori, you, me, Anita and Cindy who are doing our best to change this situation!:-).
Many doctors are too keen to treat the symptoms rather than the cause. A lot of prescription meds could be avoided if they did the latter rather than the former.
Thanks HD! You are so right, awareness is needed in the medical profession. If that can change, it would save so much money, not to mention what it would save the patient from going through. Just in my case alone, thousands upon thousands were spent on unnecessary drugs, tests and procedures, including risky invasive procedures. Things need to change!