I’ve been in somewhat of a rut lately. I have started so many blog posts and stopped. I have a lot written, but didn’t feel that they should be published. For now, they sit on my drive, waiting for another day for me to revisit and write more. I even went as far as googling “in a writer’s rut” and discovered that it is common to be in a rut but it’s important to get out of it. There were a lot of suggestions, but what ended up giving me a little bit of a push was talking on the phone with one of my most cherished friends yesterday.
Last month I attended an Asthma Advisory Board session in Atlanta where I met representatives from a company wanting to do more for asthma patients, eight other severe asthmatics who shared their experiences and we worked together to find more ways to improve communication about asthma. One thing we did have in common was that we all said “just” asthma to pretty much anything we were talking about. The leader of the session made a point to tell us that our chronic illness is anything but “just” asthma which was nice to hear.
It was good to spend time with fellow asthmatics, discussing what works for us, what challenges us and what frustrates us. I walked away wanting to write about the session in detail and as I started, I realized that it’s hard to do because it does get personal. The point of these sessions is anonymity and our privacy. I did have some key takeaways and thoughts on what I learned over the day and a half with this group.
What I’m listing here is not directly from our sessions, but points we discussed. After meeting, there was so much on my mind – our similarities, our differences, our life situations, our experience with medicine, relationships with our doctors and so much more. These key points that are important for anyone with a chronic illness to consider and work through in order to have the best overall care.
Your chronic illness could be something old or new in your life and it’s important. It’s important that you’re able to articulate what it is you have, what you go through, the symptoms, triggers and what makes you feel better to the medical profession and the important people in your life BUT your story is not your chronic illness. Chronic illness is a part of your story.
My story is primarily about my daughter. My asthma created complications that could have left her without some limbs when she was born. That’s not how it turned out – I was able to have a natural birth to a wonderfully perfect little girl who has grown into an incredible young woman. She is my pride and joy and is always at the center of much that I do. My family and friends are also part of my story and so important. Without them, I’d lose my sanity.
For years, I’ve not shared my story about my asthma or even my prolapses. It took a long time for me to talk about everything I’ve experienced. One needn’t blog and share it publicly, however I’ve learned that helping others understand what you are going through, especially if it’s an illness people can’t see, is healthy for everyone.
Through the sessions in Atlanta, I learned that at times we allow other influencers to take control of our chronic illness. We are all stressed with the cost of insurance and medication. I’ve been in the American health insurance nightmare for about four years and it’s been nothing short of frustrating the entire time.
The insurance company doesn’t get bills that go towards your deductible uploaded in a timely manner, they reject medical services, they put other costs in the out of network category. All of this is stressful, and if you’re a chronic asthmatic – stress causes asthma attacks. I’m sure the health insurance company accountants would disagree and say that stress is not a trigger in any illness and that would be the next thing to discuss.
I also have many bills sitting here on my desk that I need to discuss with the health insurance company and that is never fun. I’m told that my deductibles and out of pocket is paid yet I still receive bills from doctor’s offices or labs. I am currently working on an excel sheet and reviewing every single EOB (Explanation of Benefits) to see what they have denied covering and what they are covering. It’s not clear in your list. I learned from the very unfriendly no-customer-service rep that the list is not clear and it is my job to read every single EOB to see what is covered and what is not. I have so many WTF moments with the health insurance. Health insurance would be a lot less expensive if it were better structured. I didn’t speak to the health insurance company once the entire time I was in Germany – I was under my own insurance for well over ten years.
It’s expensive to stay relatively healthy in America when you have a chronic illness and it’s important that you manage and maximize all the costs you have to pay correctly. I don’t mind paying for health insurance and having a higher premium if I am able to have the excellent service I have today with my specialists, but I do mind the additional costs, the confusion and the lack of compassion from health insurance companies that is conveyed in every – single – conversation on the phone.
As much as I’m exhausted with the phrase “thoughts and prayers!” I’m equally exhausted with the “I’m sorry you feel this way, ma’am. Let me see what I can do to help you” that I hear from these health insurance call centers. What they are really saying is “Too bad you’re feeling this way. You figure out what needs to be done and only call back if you want more frustration.”
It’s important for people with chronic illness to take control of what is going through their health insurance, what you’ve paid, what you owe and how to optimize your benefits to work for you.
Be Your Own Advocate
What does it mean to be your own advocate? It’s more than speaking up, it’s understanding what you’re going through, knowing what your options are and making the best decisions possible with your specialists.
I am an outgoing, extroverted person so being my own advocate comes very easily to me. I’ve had asthma my entire life so I’ve experienced enough to be able to talk about it easily, to review medications and therapies available to me and to have very open conversations with my specialists. I am very fortunate that my specialists respond to text messages, emails and return my calls if I need support.
One thing I’ve learned, which I feel not a lot of people do realize is that our specialists can only support what they know to treat. I’m not talking text book cases, I’m talking about our ability to articulate what is going on with our health in order to receive the best possible treatment and avoid flare ups, exacerbations, or even be hospitalized.
I’ve recently switched from Xolair to Nucala. The decision took a few months of talking to my favorite doctor in Germany and my specialists here in Texas. My doctor here gave me the list of options for the medication and gave me some time to research each option before making a decision. We talked about each medication and through that, I learned a few things:
- I am very well informed about my illness and I’m fortunate that my doctor appreciates this and works with me on my questions and concerns when we discuss changing treatments
- I am in a partnership with my specialist’s office and through that partnership, I am able to build the trust I need to know I’m in very capable hands when it comes to staying out of the hospital and maintaining a good life (all things considered)
- I am fortunate to have “professionals” care about my well-being and at times reach out just to check on how I’m doing.
If you’re someone suffering from any illness, chronic or otherwise, please become your own advocate. Learn as much as you can and become comfortable with the specialists treating you. Uncle Google is awesome but there is so much information to comb through. Don’t believe everything you read, if it concerns you – talk about it with your doctor to learn more. Google doesn’t have all the vital information about YOU and mostly shares the generic. Your doctor has a better insight into your illness and can guide you.
Deepak Chopra, M.D. and Rudolph Tanzi, M.D. wrote a book titled “How to Be Your own Advocate” which I haven’t read yet. They also shared an article with tips on how to be your own medical advocate that is helpful for anyone ready to take that leap but needs some help.
Get a Grip on Your Medications
This is an area I am working on myself. Just when I think I have an updated list, something changes and I have to update my list of medications. Another thing I’ve learned is that doctors who are not prescribing the bulk of my medications want to know how often I’ve taken prednisone in the last year and what the dosage was. I have to add that to my list to be able to provide a complete picture.
Having a grip on your medications ties into being your own advocate. Being prepared for every appointment you have shows specialists that you truly are serious about your health and that you want to work with them to find the best treatment.
Be prepared for any appointment or unexpected visit to the hospital. An updated list helps specialists work with you and find the best approach to your health, it also helps our loved ones when they need to speak for us at a hospital because we’re having an asthma attack. I have found this to be invaluable.
Your Doctor and their Office
It’s important to pick the right specialist for your illness. When I moved to Texas from Germany, I asked my Pulmonary Specialist to help me find the right medical professional here in the U.S. I have been with the same doctor since I moved to the DFW area for my allergies and asthma and have added a Pulmonary specialist as well.
While a General Practitioner (GP) is good for simple illnesses, I’m a firm believer that for chronic illnesses, a doctor who specializes in your illness is required. With asthma, general practitioners don’t have the equipment to test lung function, how much air remains in your lungs after exhaling, blood / oxygen levels etc. These tests help with the onset of infection and also to help the specialist determine medications that may be required.
The relationship you create with your specialist is important, as is your attitude. I’m one of those patients who always replies with “I’m good!” when asked how I am. We get into the nitty gritty of what’s going on as the appointment progresses but I feel that having a positive attitude, even when you’re really not well, helps your overall health and treatment enormously.
This is where things get a little personal. One area of discussion in our session was exercise. When my father was a child, he was advised against exercise and sports with his asthma. He grew up in front of the TV regardless of the weather. Luckily, he didn’t raise me that way. My parents encouraged me to do whatever I wanted – except ride horses because that was a hot mess of allergies and asthma attacks.
I played all the sports I wanted and I was very active growing up. It helped to build good exercise habits as I got older. I have noticed that when I am not able to workout due to my asthma being in an extreme state or due to what I’ve gone through the last couple of years, my lung function isn’t that good. I’m more sensitive to my triggers, less able to workout like I want to and my energy levels are very low.
Chronic illness doesn’t mean we have to avoid moving at all costs, especially with asthma. The problem that I noticed in our group is that we are all extreme, probably because we spend a lot of time extremely sick. Everyone wants to run a 5k and needs the tools to get there without realizing that what’s required is the literal first step. We are all capable of walking and moving. On our bad days, I realize that we might stay in bed because we absolutely need the rest but that’s not 365 days of the year. One step leads to two and so on. Just take the first step.
I started just walking a mile when I felt better and it helps a lot. My dog always wants to go further because she’s used to us running at least a 5k in the past. While social media keeps showing us awesome posts from people we know who #noexcuses their workouts constantly, we don’t have to see our weakness as an excuse – I know many of us do. We need to change our mindset to #moveit and just move as much as possible.
I am a firm believer that if we are able to manage our weight, move more and learn to exercise regularly our lungs will improve. I always take my medication before I exercise, whether I need it or not, and take it with me in case I need it during my activity. This resource shares information on asthma and exercise which can be helpful if you’re just starting out. Also, feel free to send me a message and I am more than happy to help where I can!
Remember, at the end of the day we are more than “just” our chronic illness. We don’t “just” have a certain illness. We have to stop downplaying what we have and own it on every level – from the moments where we have to decline dinner invitations to working with our specialists – it’s our responsibility to “just” take action and take care of ourselves.