The Dirt on Rheumatoid Arthritis – The Day I Went Digging for Answers I Didn’t Want

My knee has been really hurting. Do you think I could have RA? My whole body aches when I get out of bed in the morning. Could it be Rheumatoid Arthritis?

Over the past several years I’ve been asked questions like this by friends. After some probing questions on my part and a little RA 101, I usually reassure them by saying the following: trust me, if you have RA you will know it!

Now, in truth, I probably missed some warning signs, and continued to dismiss them for quite some time. My family doctor had given me the name of a rheumatologist a year before I first saw him. But the real problem with autoimmune illnesses like Rheumatoid Arthritis is that there isn’t a list of early warning signs per se. Most people get diagnosed at the point where it is wreaking havoc on their joints, their muscles and their lives.

I had expressed concerns to my doctor about muscle aches and possible joint pain – especially upon waking – and crushing fatigue. She wanted an evaluation by a rheumatologist which was spot on, but I was sick to death of doctors and health problems at that point. I was coming off of almost a year of dealing with thyroid cancer.

My symptoms were confusing to me because as a part of treatment for papillary thyroid cancer I had to go completely hypothyroid. That is the protocol before being treated with Radioactive Iodine which is intended to kill off any remaining cancer cells that weren’t removed during the thyroidectomy and the surgical removal of the surrounding lymph nodes. Being tired and achy, lacking energy and the muscle fatigue, pain and weakness I was experiencing was all very similar to how I felt in the many months it took to pull out of that hypothyroid state and get the right daily dose of levothyroxine (synthetic thyroid hormone) figured out. I also had trouble after surgery with my calcium and vitamin D levels. Again, some of the symptoms all overlap with hypothyroidism and rheumatoid arthritis. Was the tingling in my hands and feet from low calcium or something else? This was the constant questioning, assessing and worrying I was doing.

Even with waking up repeatedly being unable to move my right arm, I still resisted. I was stuck in fear, frustration, anxiety and denial. Putting off getting an evaluation with a rheumatologist was foolish. And when we don’t listen to our body and allow illness to continue to take hold, eventually the message will be so loud you can no longer realistically ignore it. Which is why I have told people if you have RA you will know. It won’t come and go – it will come and stay and continue to escalate. 

RAD

Coming out of the shadows. It’s more than just arthritis.

It’s Time …

… to check your neck!

for more information about your thyroid visit AACE’s excellent new website: 

www.thyroidawareness.com 

 

The American Association of Clinical Endocrinologists’

How to take the Thyroid Neck Check

All you will need is:

A. Handheld mirror
B. Glass of water

1. Hold the mirror in your hand, focusing on the lower front area of your neck, above the collarbones, and below the voice box (larynx). Your thyroid gland is located in this area of your neck.
2. While focusing on this area in the mirror, tip your head back.
3. Take a drink of water and swallow.
4. As you swallow, look at your neck. Check for any bulges or protrusions in this area when you swallow. Reminder: Don’t confuse the Adam’s apple with the thyroid gland. The thyroid gland is located further down on your neck, closer to the collarbone. You may want to repeat this process several times.
5. If you do see any bulges or protrusions in this area, see your physician. You may have an enlarged thyroid gland or a thyroid nodule and should be checked to determine whether cancer is present or if treatment for thyroid disease is needed.

Every time you look in the mirror, a key to your well-being is staring back at your thyroid gland. The thyroid gland is a small, butterfly-shaped gland located in the lower front of the neck, above the collarbones, and below the voice box (larynx). Your thyroid gland makes hormones that help control the function of many of your body’s organs, including your heart, brain, liver, kidneys, and skin. Making sure that your thyroid gland is healthy is important to your body’s overall well-being.

Some patients who have an enlarged thyroid gland may also produce too much or too little thyroid hormone. Because many symptoms of thyroid imbalance may be hard to recognize and may be mistaken for symptoms caused by other conditions, the best way to know for sure about your thyroid health is to ask your doctor for a TSH (thyroid-stimulating hormone) test, a simple blood test that measures whether your thyroid gland is functioning normally. If you have a family member with thyroid disease, are over the age of 60, or have any symptoms or risk factors associated with thyroid disease, you should talk to your doctor about getting a TSH test.

Yet Another New Year – Starting Over Spoonie Style

Happy 2014!! Take a wild guess what my resolution is? Yep, reviving and working on my blog and working on my writing in general. Here’s hoping it’s easier to accomplish than in 2013! I had the realization last year that the problem with blogging about chronic illness is that, well, I’m chronically ill. Two big surgeries with long recoveries derailed me. And as with all Spoonies, having to prioritize and conserve my energies is an ongoing challenge. I am happy to report that I am starting this New Year with increased energy which I hope will translate to increased time for all the things I love to do and need to do.

In trying to refocus myself it occurred to me that blogging about both chronic illness and learning differences makes my focus a bit challenging. But that is my life. Those are the two overriding themes that at this point in time impact almost all decisions in our life – from how many activities to schedule in a week to where we live. And there’s another big reason. And it’s my passion to explore it. I am convinced that there are genetic links between mother’s with autoimmune illnesses and children with learning issues.

In fact, that is one of the reasons I was so in tune to what was going on with my son at an early age. When we had him evaluated for his speech that was delayed and unclear to others it was determined that he had a Severe Articulation Disorder. At the time my concern was whether this would be a stand alone issue or part of a larger learning issue. About two years before this I had been researching Hashimoto’s Thyroiditis and came across an article discussing genetic traits and it said that mothers with Hashimoto’s were more likely to have children that were left-handed and had Dyslexia. I wish I could find this article again to link to it, but alas, I can’t find the exact article. Suffice it to say that it always stuck with me because my son is left-handed and no one on either side of the family knew of anyone who was left-handed. And for some reason the Dyslexia bit stuck with me too. So when my little man was diagnosed with articulation problems, I immediately recalled this article and wondered if it would be a part of a larger issue with language, and as it turns out, it was.

I have come across more and more articles and comments on websites and blogs noting these connections. I am not alone in my observations and more and more research is coming up in my Google searches. The link between autoimmune illness and Autism is an area of research as well.

If I had to deal with multiple autoimmune illnesses or learning disabilities, I am glad I am living in a time with easy access to information, the ability to connect with so many others dealing with similar circumstances, and during a time of so much exciting research on the brain, the body, and our neurological and immune systems.

Both my son and I have a cluster of issues and it’s fascinating to me the way they inform one another. Probably one of the hardest diagnoses to describe to others is Fibromyalgia. And likewise, my son’s diagnosis of Sensory Processing Disorder, and how it manifests for him, is also much harder to explain to others than Dyslexia. What I can tell you is that there is without a doubt a link between these two seemingly unrelated syndromes.  In fact, my body’s hyper response to a wrinkle in a shirt or the covers (which triggers muscle spasms and pain) helps me to understand why a tag in my son’s shirt could set him over the edge. And it often feels inexplicable why one day may be worse than another, but I know that it’s true for both of us. Researchers are beginning to understand more about each of these disorders that until recently were treated with skepticism by the medical community. The more they learn about each, the more shared sensory and regulatory issues become clear. And I am guessing the genetic predisposition or link between the two will also become more obvious.

So my blog, like my life, will continue to bounce back and forth exploring these issues. If it wasn’t for my health issues and the advocacy and research skills it necessitated, I may not have been as well equipped to manage my son’s needs. I am forever grateful for that silver lining. And I am grateful to have this venue to share my thoughts and experiences. Happy New Year!

More on Fibro and SPD:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3272297/

http://www.sciencedaily.com/releases/2008/05/080531091216.htm

http://onwisconsin.uwalumni.com/departments/sensory-overload/

More on Hashi’s and Dyslexia:

http://www.allthyroid.org/disorders/related/dyslexia.html

http://www.webmd.com/a-to-z-guides/hashimotos-thyroiditis-symptoms-causes-treatments

http://www.netplaces.com/thyroid-disease/the-unhealthy-thyroid/factors-that-increase-risk.htm

http://www.thyroid.ca/e1b.php

More on Autoimmune Disease and Autism:

http://sfari.org/news-and-opinion/in-brief/2012/clinical-research-autism-genes-linked-to-autoimmune-disease

Patience is a Virtue

Today I lost my temper with our puppy in a moment of being tired and fighting the fatigue and aches of my RA post-Christmas on a cold day. I have a feeling I am suffering from some fluctuating hormones as well – this has happened a couple of times since my hysterectomy. Anywho, my son was getting worried that the puppy who had run off wouldn’t return or would be hurt and my anger and the ugly tone of my voice surprised him. “I’ve never seen you like this,” he told me. He sounded so grown up and I was reminded of how mature he is becoming. And I was so proud of him for speaking up when concerned, and, in a weird way, proud of myself. Don’t get me wrong – I felt small for loosing control, but I was pleased to realize he rarely sees me behave like that. I could have felt bad about a momentary lapse. Instead, I chose not to beat myself up, but to remind myself how often I remain calm and collected in his presence and reminded myself how grateful I am that I don’t have to harshly reprimand him to get the desired response from him when he’s the one not at his best. We’ve made that happen together. And I’m really, really glad about it. Still, it was a reminder for the new year that the most powerful way to teach your children is by modeling behavior. That my past efforts to be the best parent I can be have been well worth it. I’m glad to be in the moment at the start of this year and grateful for fresh starts. Each year. Each day.

My hysterical end to 2012 – a quick recap

Seems I turned into Chronically missing Chrissy the past few months. I suppose the trouble with blogging about living with chronic illness is, well… I’m often battling chronic illness. And the fourth quarter of 2012 was kicking my ass.  So my dears, a dozen reasons to say adieu to 2012:

1 failed sinus surgery

2 visits to the infectious diseases doctor

3 trips to the ER

4 sonograms

5 rounds of IV pain meds … that did not help

6 weeks of hysterectomy recovery

7 years of ‘in sickness’

8 failed attempts to go wheat-free

9 months trying to avoid a 3rd sinus surgery

10 years too little with our beloved dog

11 different doctors

B12 deficiency

Farewell to a long year. Chronically Chrissy is officially ringing in the new one. So let’s toast to 2013 – To Health – of course!

Cheers!

– Chrissy

 

 

 

Today You are You – that is truer than true. There is no one alive who is Youer than You.

Dr. Seuss – Five Lessons in Life

Am ordering this for Mr. P’s new play loft and reading space. Have a great week!

Be You – inspiration from Dr. Seuss

Can any cancer be considered a “good” cancer?

Chronically Chrissy and friends many moons ago.
In loving memory of Anne – may she rest in Peace.

“If you’re going to get cancer, I guess that’s the one you want to get.”  Or, “I heard that’s a good cancer.” When people first said some version of this to me after learning I had been diagnosed with thyroid cancer, I took the comments as I think they were intended – to relieve themselves, to try and relieve me, and the whole “well, thank goodness, it isn’t worse” form of coping. I didn’t think they were trying to insult me, but rather they were simply offering what they had heard or read. And sometimes I think people were just coping with the uncomfortable when they didn’t quite know what to say.

Overtime, however, as the months dragged on and my energy continued to lag, and the depression that accompanied going completely hypothyroid set in, it became harder to let this type of comment roll off my back.

For the record, thyroid cancer is not a “good” cancer, but often, in its most common forms it is very treatable. And what thyroid cancer has compared to other cancers is that “magic bullet” – radioactive iodine. Because the thyroid uses iodine, thyroid cancer patients are often given radioactive iodine to kill their thyroid tissue and any remnant cancer cells which also uptake the radioactive iodine. There are side effects with radioactive iodine and in many cases patients have to be isolated and follow strict protocols for dealing with the radioactive waste their bodies are producing in their sweat and other bodily fluids. It’s creepy, but it is very different and probably preferrable to radiation or chemotherapy. And for these reasons some people think of it as a “good” cancer.

But that brings us back to the original question: can any cancer be considered a “good” cancer. I have a friend who died in her twenties from another cancer people sometimes think of as “good” – skin cancer. To be sure, many cases of skin cancer are also very treatable, but this is where we need to realize that treatable and good are not exactly synonyms.

Oops, I did it again – the importance of a second opinion

my aching head

I should have known better. I already learned this lesson once the hard way.

 Yesterday I met with the Vice-Chairman of the Department Otolaryngology at the medical school. He specializes in revision surgery. He confirmed that I do indeed need a third sinus surgery. As for my recurrent MRSA infection, he is unconcerned. He concurred with my current ENT that the mechanical problems are creating the breeding ground for infection and then triggering the cycle of inflammation. Plus, as he so diplomatically put it, there are some “man-made” problems to address.

Hmm. Not what I wanted to hear.

In fairness to my current ENT who performed the past two endoscopic sinus surgeries, I also had sinus surgery in college. And I wouldn’t be talking to this renowned surgeon now but for the fact that I’ve been referred by my ENT and am classified as someone with unsuccessful outcomes. Still, clearly, I should have had a second opinion before the first surgery, and certainly before the second.

Now, in my defense, the first surgery was so obviously necessary, and because my primary doctor referred me to this ENT, I wasn’t concerned about a second opinion. But here’s the other mistake I made: I didn’t bring my husband with me to the appointment when my sinus CT scan and surgery were discussed. This is something else I has also learned the hard way before.

It is so important no matter how organized, how astute or how good a note-taker you are to have someone else with you. It pays to have another pair of ears and another perspective when discussing a medical procedure like a surgery. I am sure in hindsight my husband would have asked about the objectives of surgery in a more specific, analytical fashion than I had. I had simply reached the point that I longed for someone to cut my head open if it would get rid of the headaches, pain and pressure. So I heard what I needed to hear.

Before the second surgery I should have asked, “What are the risks of waiting and getting a second opinion?”

Lasting Olympic Inspiration

Learning Different Olympiads

Well the Olympics are over, but these athletes continue to inspire. A list of 14 Olympiads to inspire our kiddos with ADHD, dyslexia and other learning differences:

Michael Phelps (enough said! ADHD)

Bruce Jenner (1976 gold medalist – dyslexia)

Cammie Granato (2 time Olympiad in ice hockey – ADHD)

Greg Louganis (gold medal diver – dyslexia)

Jim Shea Jr. (2002 winter Olympiad – dyslexia)

Molly Sullivan Sliney (Olympic fencer – dyslexia)

Chris Boardman (gold medal cyclist – dyslexia)

Logan Dooley (Olympic alternate – dyslexia)

Duncan Goodhew (gold medal Olympic swimmer – dyslexia)

Eric Gillis (marathon runner – dyslexia)

Steve Redgrave (Olympic gold medalist in rowing – dyslexia)

Rulon Goodhew (gold medalist Greco-Roman wrestling – dyslexia)

Dan O’Brien (Olympic decathlete – dyslexia)

Pam Shriver (tennis gold medalist – dyslexia)

The take away for me? There are so many ways to compete and find success in the world both individually or as a part of a team. And even though these are all athletes, look how varied their skills. A child who isn’t well-coordinated on soccer field, may one day be a world-class runner. Even more inspiring, so many of them credit their parents with helping them succeed.   ~ Chrissy

Curious about other famous folks with dyslexia or ADHD?

http://www.dyslexia.com/famous.htm

http://www.additudemag.com/adhd/article/8681.html