My name is Anita and at a glance I don’t look sick. Like many of you reading these words, I give the impression of a woman of a certain age with a bit of a weight issue and a fabulous sense of style and confidence, but nothing more dire would cross the readers’ minds. I wish. Fervently, I wish, and have wished this for many years now.
In 1998, I was diagnosed with Hashimoto’s thyroiditis. By this time, I was very sick, and beginning to show it. Fortunately, I was diagnosed and started on the long journey to understand this disease, my body and how to treat and feed it. I’m still learning, but have now gotten most of the thyroid symptoms under control. In fact, I was doing so well, I was full of energy, happily and heartily lifted weights, exercised, got hair growing again, and looked 10 years younger than my age. I was happy, lively and life was just fine. Unfortunately, I am now being ravaged by a silent, progressive and highly aggressive inflammatory autoimmune illness of no name. It started the week after I turned 42. I won’t detail the month by month agony, my fear, my frustration with a medical community that all but told me to take a hike because I didn’t fit neatly into a “category.” I became more crippled by the month, and nine months after I started, I began to think that I couldn’t live the rest of my life like that. It had gotten to a point where I could barely function normally, could barely shower, brush my teeth, comb my hair, dress myself. I. was. crippled.
Finally, I scraped together what money I had, as I had no insurance, and made arrangements to see a doctor known for her willingness to look into natural healing when conventional meds failed. She said she thought it sounded like I had late stage Lyme disease that had gone wild. I was desperate, she put me on antibiotics, and within one month I had regained much of my life. Now, there is still argument between my doctors about the Lyme and whether I actually had it or not. We’ve still never figured that out. There WAS a tick, and soon after I got sick and had odd rashes. So who knows?
I stayed on antibiotics for a year and a half. I did a full Lyme treatment, and while I was by no means normal, I had regained much of what I had lost. However, when I went off the antibiotics, my condition quickly worsened. In fact, I found myself once again crippled. Add in the fact that my husband and I lived in Macau, China at this time and medical treatment was hard to find. I was very lucky to stumble onto Dr. Jason Brockwell, an orthopedic surgeon in Hong Kong. A robust, energetic, highly likeable gent who took charge of my case and sent me on a round robin of doctors’ visits, blood tests and x-rays. Within one month of meeting Dr. B, as I call him, I found myself checking into the hospital on the Peak in HK, and starting a year long journey of pain. Character building pain. But also, eventually, renewal. I had four surgeries that year, and I came out better, stronger and much smarter about what worked and what fails to benefit my body. I’m never going to be what I was, I’m always going to have mobility issues, but the surgeries made a huge difference and I’m more than grateful for that.
I think many people genuinely want to be well. But if you find yourself on the autoimmune side of the street, you often have to live a fairly strict life in terms of habits, routine and deprivation. I had to change everything I did on a daily basis, how I moved, how I exercised, how I ate, what supplements I took, etc. It has taken me years to get to this point. Most of us with inflammatory or autoimmune illness have food allergies and nutritional deficiencies. I am allergic to gluten. Sensitive to sugar. I am anemic and require high doses of vitamins B and D. I MUST move everyday. I can no longer lift weights the normal way, but must exercise. My knees don’t bend anything like a normal person, and I sometimes have to have help putting on socks or shoes. I’ve had to have my pilates instructor put my socks on. Now that’s a lesson in humility. I have a terrible time with muscle wasting and fight it daily. One week of slacking, and I am notably weaker. My muscles waste that quickly. For a woman who worked at looking like the “she hulk” for many years, THIS is one of my most frustrating problems. I LOVED to work out. Before this illness struck me, I could go and go all day long. I was the energizer bunny. Among my friends and colleagues, I was legend. Now, I’m the one who has to sit down for a few minutes every hour whenever we go out. I hate this more than I can say. But I don’t stop. I never stop. In fact, two months after the second surgery on my right knee, my husband and I hiked Angkor Wat in Cambodia. One month after I removed the cast from my ankle surgery, we went scuba diving in Thailand. I can’t lie, this illness affects my life in ways I lament. But I won’t allow it to steal my life. I occasionally cry, pout, rage, you name it. And then I furrow my brow and push on.
Like any normal woman, I am concerned about my looks and maintaining my appeal to my wonderful, loving husband. I must battle not only the usual concerns that an aging lady must deal with, but also the disease oriented ones as well. The thyroid disease makes it difficult to lose the padding I’ve put on. The fact that I’m partially handicapped only exacerbates that. I do pilates and walk, but I am still overweight. My husband is fine with that and asks only that I stay active and toned. Sounds reasonable. We’ve recently moved to Seattle, and I can see that the general attitude here will only help, as outdoor activity is high on everyone’s list. The thyroid disease thinned my pretty red hair, which was less than thrilling. The Plaquenil I take for the RA type condition makes it really vacate my scalp. Wow. And there’s not a darned thing I can do about it. It also causes acne. Acne! At 47, after a lifetime of perfect skin, even as a teenager – I have acne. I’m actually using zit cream for the first time in my life. That blows my mind. And pisses me off.
Fatigue. The word “crushing” often precedes the way I describe it. There are days when my body simply shuts down. I literally cannot function. The pain ramps up and I am immobilized by it. The mental fog is greatly improved on the Plaquenil, so that’s not nearly the complaint it used to be. Swelling? Oh yeah. My eyes usually look like I’ve barely slept. But I also have weeks where I look fine.
I pay a lot of attention to nutrition and eat as organic and healthy as I can. I slip up. Like recently. Coming back home to live has exposed me to foods I’ve not even seen for years, and I’ve indulged a bit. And that’s OK. I’ve given myself permission to have done that and now am back on track. Juicing, vitamins, no gluten, easy on the dairy, high on the healthy protein, low on the sugar, take that cat’s claw, easy on the NSAIDs, and heavy on the veggies. Whew. It’s a lot to keep straight, and being disciplined isn’t my strong suit.
So, that’s my introduction. I plan on writing more about topics like nutrition, herbs and ideas for folks with multiple immune issues, as well as my infamous cosmetic product reviews. I’m a notorious makeup and product junkie, and am thrilled to chat with others about finds and fabulousness. Look, ladies and gents, I know we have mountains to climb. That’s OK. It’s about not giving up. Not giving in. It’s about us winning, not the disease. And, it’s about us looking amazing while we do so. After all, the one thing that separates us from the animals is our ability to accessorize!
Wow, Anita, you’ve always been an inspiration to me since we first met, must be about two years now, but a writer too. I’m liking this a lot! You have so much wisdom to share and your attitude rocks like nobodies business! I’m thrilled you will be writing more.
I know the destruction your body has endured but didn’t know it was a mystery. I don’t know what other than Lyme disease could cause a persons body to go so swiftly in self-destruct mode. Although, RA can do that pretty well too. I know it would be nice to know what caused it, if that knowledge could help stop it, but I can relate to trying to find help in the medical community when you don’t “fit” into a neat package. I hope this “unknown” is not still causing damage to your joints.
Although I’ve had huge improvement in pain, I still have much more than I care to live with, but it never fails to fool me. On the good days I think I’ve turned a corner and it won’t get bad again, then it seems out of nowhere it stops me in my tracks, once again. That frustrates me to no end because I can’t figure it out. But overall, it’s lots better than it was so I must be on the right track. And I’ll never give up trying to resolve it. I can’t undo the damage that’s been done and there’s nothing I can do about it, so I don’t dwell on that anymore. It’s all about making the best of what I have now and working to improve it!
I couldn’t be happier to climb this mountain with such good company, and positive energy! And yes, let’s accessorize while we do it! Oh, and bring on the cosmetic reviews. I have lots to learn, as this past year my face has really aged and I’m not liking it!
Thanks for your comments, Lori. I’m excited too – as I said on your wall, Anita is beautiful both inside and out and I think we can learn a lot from her sharing her experience and tips. I have always loved her sassiness and guts and the feeling that she is somebody who never gives up no matter what obstacles life puts in ther way:-).
I’m looking forward to reading about your experiences and your insights.
HD in Oregon
I’m also looking forward to reading what Anita has to say, HD. Her first article was very interesting and I think she is a great writer:-).
Loved to read your inspirational article. Not sure if this would help, butI am 48 and I also have Hashimoto’s, Fibromyalgia and chronic fatigue, but I am a lot better than I was – like you, I battle to be well and yes, love fashion, beauty products etc, like most of us ladies, although I do use chemical free products. I have stuggled similarly and I am always researching for answers. I have recentyly discovered Immunocalm (kalawalla) which is said to regulate aggressive autoimmune reactions, and I have been taking it for around 3 months (on and off). It does seem to have done something, as, like you, I was getting some amazing flare ups including sudden flare ups of boil-like spots on my face, massive tooth abcesses, and if I get bitten by an insect in the garden, my whole leg swells up!! Kalawalla calms down the immune system in those with autoimmune disease and I have provided this link so you can read about it. http://www.regenerativenutrition.com/content.asp?id=509 – it doesn’t work for some, but for others it works well – but then, we are all different as I have come to realise and what works for one person, may not work for another – what makes us all unique, I suppose, but on this journey its important to share as you never know what will or wont work.
It is a struggle and you have been through the mill and your strength will take you through
Many thanks for sharing your story and I wish you all the very best on the journey to recovery and look forward to reading more
Thanks for commenting and sharing your experiences. It sounds like you have been on a similar journey to Anita. I know that Anita is very interested in different herbs, so I’m sure she’ll be glad for this recommendation. You are so right – it is very important to share and for me this was one of the reasons for setting up this site. You are also right when you say that each of us is individual – I really wish there was one cure for all of us, but it’s not that simple and doctors need to realise this too – the same applies to thyroid meds. Not everyone does well on the same thyroid med. Your words are very encouraging.
Wishing you all the best too,
Pleasure to meet you Anita, You are A Sweet, enjoyable, and talented addition to the site. Thank you for sharing your story. I feel A combination of horror for what you’ve suffered, and and reassurance we are not alone in this overwhelmingly devastating illness.
thanks everyone, i think we’re all excited by this site that sarah has worked hard on, and i think this will be a wonderful forum for information, expression and and support. looking forward to watching it grow!
Thank YOU, Anita. It is a lot of work, but it’s fulfilling because it allows us to share our experiences and help each other. I’m also excited to watch it grow.
This is Helpful. Appreciated.
Thank you, ADHD.
Thanks for the link about
Kalawalla whichcalms down the immune system in those with autoimmune disease and for the link so you can read about it. http://www.regenerativenutrition.com/content.asp?id=509
Also to Anita for explaining how you’ve learnt about the vits and meds you need to take and how you need to move, even though it hurts. This was a really inspirational piece, straight from your heart and I’m really glad you wrote it so I could share it.
Thank you very much for sharing your tip, Shan. Really glad you liked Anita’s first piece.
Thank you Anita, I love your upbeat fighting spirit and look forward to getting to know you better.