When Venus Williams bowed out of the U.S. Open last fall due to Sjogren’s syndrome, you may have thought, What? But her problem is more common than many think. Sjogren’s belongs to a group of some 80 autoimmune diseases in which the immune system goes haywire and attacks healthy tissue and organs.
Most such illnesses share a few traits: They are on the rise, run in families, are most prevalent in women, and are notoriously difficult to figure out. Patients often see four or more doctors over five years before being correctly diagnosed or finding proper treatment. The key is to identify the disease before it does any lasting damage. Here’s how a handful of women and their doctors unraveled the mysteries of five common conditions.
This is a book for people who will not be their old self again and for all those for whom, at least now, getting better isn’t possible. This is a book that most reassuringly says even to those people, “You too are going to be okay–even if you never recover your health!” -Sylvia Boorstein
Author Toni Bernhard (who is participating in this book club!) tells us, in the preface of “How To Be Sick,” that she wrote this book “to help and inspire the chronically ill and their caregivers as they meet the challenges posed by any chronic illness or condition, including: coping with symptoms that just won’t go away, coming to terms with a more isolated life, weathering fear about the future, facing the misunderstanding of others, dealing with the health care system, and for spouses, partners, and other caregivers, adapting to so many unexpected and sometimes sudden life changes.”
In the section of the book titled How Everything Changed, we first read about how Toni got sick, and then how–to her surprise and bewilderment–she stayed sick.
How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?
Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?
Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?
This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.
I still remember the first time I took Prednisone; it was quite an experience, to say the least. First, most of my pain and symptoms just seemed to magically disappear. Then, there was the euphoric buzz that made me feel like the Road Runner with Acme rocket-powered boots, after drinking a couple of cans of Red Bull. Last was the hunger–a hunger that I never experienced before in my life. I started to eat so much, that I felt like a Hobbit: first midnight snack, second midnight snack, and so on. (Don’t even get me started on how much I ate once I actually ‘woke up’ for the day!)
My weight gain was so immediate, that during my follow-up appointment my rheumatologist kindly suggested that I opt for healthy snacks, such as apples. And all I could think of in response was: are you kidding me…apples? Give me potato chips, give me cookies, give me ice cream, and give me pickles!
Fast-forward a few weeks, and I quickly realized that I had to come up with a better action plan for future prednisone tapers, when it came to snacking. And even though I haven’t done a prednisone taper in almost a year (last time around, I reached a point where I was really concerned about the withdrawal symptoms that I experienced), should I need to do so again in the future, these are the two things I will get ready the day before I take my first dose, just as I’ve done so many times in the past.
Presto 04830 PowerPop Microwave Multi-Popper
Okay, I remember a time when “healthy” popcorn meant air-popped popcorn…and no matter how much I tried to pretend that it tasted good, it didn’t. This microwave popper solves that problem. Even without butter or oil, the popcorn it makes is both tasty and healthy. Additional benefit: once you calculate the per-serving cost, it’s much less expensive than traditional microwaveable bags of popcorn.
Disclaimer: No material connection. I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned.
When I’m in a taper, I can never eat too much jello. I prefer the type from the box, with real sugar. (I don’t like artificial sweeteners; it’s a taste thing.) Here’s an interesting bit of trivia: nine boxes of Jell-o are sold every second in the U.S. Additional benefit: if you’re missing the alcohol, due to all of the medicines you’re currently taking, with a little imagination you can pretend you’re downing jello shots!
The other day, I quickly skimmed an article (I can’t remember where) which has as it’s basic premise the theory that rheumatologists needed to show more empathy towards their patients. I’m not sure if I’m in agreement with such a statement, primarily because I don’t really know what this statement actually means, in practice.
Wikipedia tells me that empathy is “the capacity to recognize and, to some extent, share feelings (such as sadness or happiness) that are being experienced by another sapient or semi-sapient being.” Okay, so I know what this definition means, and I’m certainly not advocating for a lack of compassion in the medical world, or in any other professional relationship for that matter. But this is exactly what I consider my relationship with my rheumatologist to be: a professional relationship. And as with all of the many professional relationships that I maintain on a regular basis, the degree and the nature of any personal connection varies drastically, but usually is somewhere on the low end. (Otherwise, of course, I would call it a personal relationship.)
I often hear people complaining about the fact that their rheumatologists do not validate their pain. With this I can relate, because for years, I used to say as much. I’ve written before the finding a good rheumatologist is a lot like dating…the more expectations there are going in, the harder it is to find that perfect “mate.” After a couple of unsuccessful doctor-patient relationships, I finally asked myself exactly what it was that I was looking for from a rheumatologist. Thoughts of validation continued to hover in my mind. But as I continued to think about what this actually meant, I wondered of this was really what I was looking for. My answer was: no.
Now, I certainly need a doctor to accept the fact that I live with an autoimmune illness, even though I continually have the squeakiest-clean lab reports. If I ever encounter a doctor who tells me that there is nothing wrong with me (as I have on various occasions), right then and there I know that this isn’t the doctor for me…and move on to another one.
But once I’m working with a rheumatologist who accepts my diagnosis, what am I looking for then? Empathy? Validation? Not really. What I’m looking for (and don’t get me wrong, I’m not a cold-hearted person at all, it just goes back to how I approach professional relationships) is someone who can perform physical examinations and minor procedures, prescribe and monitor pharmaceutical treatments, and accurately interpret my lab reports.
And this, in a nutshell, is what I look for in a rheumatologist.
Anything extra is exactly that: extra. And just like dating, as soon as I lowered my expectations, I found a wonderful rheumatologist who I have been working with for the past couple of years. Yes, we have a relationship that goes beyond the three items that I listed above…there is a lot of humor, teaching (in both directions), and respect. In the past, when just nothing seemed to work, I often saw the pain and anguish in his face, the disappointment he felt with not being able to do more. Was this empathy or validation? To some people, it might have been. To me, it was a sign of a doctor who obviously wanted to do his best to treat his patients with the tools that he had; more importantly, it was a sign of professionalism.
I’ll add one more item to my list of what I look for in a rheumatologist, which I previously failed to mention because even if it’s something that my doctor does not practice, it’s something that I practice myself. And as an example, I’ll use my current rheumatologist: every option, every medicine, every procedure that is offered to me is presented as a question, as in “We could do x to you knee, do you want to do this?” or “You could take y medicine, do you want to take that?”
And then, it’s up to me to make my decision, and answer his questions. And whatever my answers might be, they are always accepted without judgment. Case in point: once, he offered to drain excess fluid from my swollen knee. I knew this procedure would provide some relief, but on that particular day I just knew that I didn’t have the strength to have a needle inserted into my knee. So I took a pass. This was okay with him, and it was okay with me.
Yes, we have the right to expect professional, kind service from our rheumatologists, and shouldn’t settle for anything less. But our doctors are only human, and have been trained in certain specialties. Rheumatologists should be aware of the psychological impact of the diseases that they treat, and should make the appropriate referrals when they see that a person is struggling with depression or suicidal thoughts…but the professionals who are best suited to deal with these issues are psychologists.
And when I myself needed this emotional and psychological support a few years ago, I did myself a favor and found a psychologist to work with. It was at this exact moment in time when I found a rheumatologist who provided everything I was looking for. A major factor of this success what setting appropriate, and realistic, expectations for each one of my relationships with various healthcare professionals.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
It came on in Feb. 2011. I was diagnosed Aug 2011.
What advice would you give to someone who has just been diagnosed with RA?
Educate yourself, ask questions, be pro-active. Keep fighting, don’t give up or give in! Remember that God has a plan for your life and RA is part of that plan. Know that there is a bigger picture that we can’t see.
Do you use any mobility aids?
Currently I use wrist and ankle splints. The ankle support helps the pain. The wrist splints limit my mobility which causes less pain. On a lighter note, my kids are mobility aids too…they help do things, get things, move things, and best of all, love on their mommy (which gives me inner strength)!
How has living with RA helped to improve your life?
Living with RA has made me more aware and sympathetic to others. I was already a compassionate person, but RA brings out a whole new level of caring and concern. It also puts life into perspective a bit more. Yes, RA isn’t great, but it’s not terminal. I’m grateful for all my blessings!
Do you have any visible signs of RA?
The only visible signs I have would be my wrist and ankle splints. Other than that, my friends and family can tell by my face if it’s a bad day.
Can you please describe some of your favorite coping strategies for living with RA?
Prayer is the best coping strategy! Second to that is being able to talk to/vent to someone who understands or just someone who loves me (like Mom!)
Can you please describe your current medical (traditional and alternative) treatments?
Currently I am taking Prednisone and Hydroxychloroquine (Plaquenil). I also have upped my intake of vitamin D significantly and started working with a physical trainer at my gym who is certified for working with arthritis patients.
Is there anything else about yourself that you would like to share?
I am a single Christian mom of two wonderful kids; my son is 9.5 and my daughter is nearly 8 and we all have ADHD (woohoo!). I work full-time, go to school full-time, and am active in our church. We love the Lord and are grateful daily for all our blessings.