My name is Gail Wright. I was diagnosed with ankylosing spondylitis (AS) in January of 2014. Prior to my diagnosis, I was active at the gym, doing all kinds of crazy things – from burpee challenges to body weight workouts, and dance parties holding weights. I had taken up running in 2009. I had learned to love running the Forest Preserve trails in Chicago with my dog and even took myself on 13 mile (half–marathon) runs for fun.
In December of 2013, that all changed when I experienced my first bout of costochondritis that led to my diagnosis of AS. Since 2014, I’ve gone through five lumbar surgeries, bilateral carpal tunnel releases, a left rotator cuff repair and a couple of kidney stone surgeries. Throw in a few epidural steroid injections and selective nerve root blocks for good measure.
After being involved in our local SAA spondyloarthritis support group for about a year, I decided to step up and take a leadership role. Through my experiences as a support group leader and my frequent interactions with doctors and hospitals, I’ve become a pretty good advocate for myself. I’ve learned how to speak up for myself, and collaborate with my doctors.
In August of 2019 I experienced pain like I’ve never had before. I couldn’t even get out of my recliner. I waved the white flag and agreed to go to the ER by ambulance. Seven firemen and two EMTs gave me pain meds and managed to pick me up and load me into the ambulance. They were kind, compassionate and understood my level of pain. Ambulances take you to your closest ER – in this case, not the hospital I was familiar with. Upon arrival to this ER, I asked for my spine surgeon, who practiced at a different hospital, to be called. That was met with resistance. First thing they did was pull up my records. You can imagine the list of medications that popped up. The ER doctor couldn’t even pronounce ankylosing spondylitis, much less understand what kind of pain I must be in. They ordered a CT scan of my lumbar spine. When that came back with nothing significant, the judgement got even worse. My husband by this time had gotten hold of my spine surgeon and he said, “Get out of that hospital immediately and come here.” They loaded me up with enough pain meds that I could get off the table and have my husband drive me to the hospital where my spine team works.
Upon arrival to the second ER, I was again met with judgement and eye rolls. An MRI revealed more of nothing too exciting. I was admitted so that they could control the pain and do an epidural steroid injection. During my hospital stay, the hospitalist, who basically runs the show, was rude, judgmental and didn’t provide proper care. The hospital didn’t carry the anti-inflammatory that I take. After missing three doses, he asked me if I’d prefer to take something else, and proceeded to list a bunch of alternatives. I politely said, “Please call my rheumatologist. I don’t make medication decisions.” That never happened. My husband was finally allowed to bring my medications from home so the pharmacy could identify what I wanted to take and approve it.
I could go on and on about the improper treatment and judgement that I received while at this hospital – but believe it or not, that is not the focus of this article. I wanted to share my experience, and what I learned, to hopefully prevent others from experiencing this scenario. Looking back, having documents and action plans with me at the ER would have been helpful.
I shared about my experience online, and SAA heard my story and reached out. We have been working together to create new resources to help those who may find themselves in my situation – having to go to an ER for pain they cannot control and can no longer bear. Here are some suggestions we hope are helpful.
- Develop a care plan. On this care plan, your health care providers’ numbers can be listed so that ER doctors or hospitalists can easily call, collaborate, and coordinate your care together.
- The SAA has developed an informational sheet about spondyloarthritis that you can bring to an ER to help emergency care providers gain a basic working knowledge of the condition, associated risks, the medications we take, and how they work.
- The SAA has also developed a template that you can use with your doctors to document your treatment and typical levels of pain/functioning. After working on the document with your rheumatologist or primary care physician, you can present it to emergency care providers to give them an understanding of how you typically function, as it may differ from how you present upon arrival to the ER. (Editor’s Note: both of these resources are now available on our website, at spondylitis.org/medical-emergencies.)
- Work with a case manager, if one is available to you. If you have health insurance, then you likely have access to a case manager (also called a care manager). This is usually a licensed professional such as a clinical social worker, registered nurse, nurse practitioner, or counselor. These individuals can act as your healthcare coordinator.
So many of us avoid the ER. My husband is under strict orders to never take me to the ER unless I have an actual bone sticking through my skin, I’m bleeding copious amounts of blood, or I’m unconscious. He knew it was bad when I said, “Make the call.” After the treatment I received in the ER and the hospital, I’m back to sticking to the above criteria. Hopefully I’ve turned my anger into actionable steps that can help myself and others be prepared to advocate for ourselves, and get doctors to collaborate to provide us with the standard of care we deserve.
I recently had the opportunity to work on a training video for doctors who would be prescribing a new medication. They wanted to include a patient’s perspective. After telling my AS story, they asked if there was anything else I’d like to say. As I said above, I’ve learned how to effectively communicate in order to, ideally, receive outstanding care. When I was in the ER in that level of pain, all those skills went out the window. I finished my interview by saying, “When I’m at my worst, I need you to be at your best.”
What is a Case Manager?
Case managers work with you to help ensure that your healthcare needs are met. They will ask about your health, and healthcare needs – emotional, mental, and physical – in order to determine, together, your primary health concerns. After identifying the highest priorities, you will discuss next steps, such as treatment options, barriers to treatment, coping methods, and social support systems.
What is a Care Plan?
A care plan is an individualized document that highlights the major health concerns you want to improve. It can include medical, psychiatric, substance abuse, and any other issues you may be dealing with. Once you approve the content, and give consent, this document can be sent to your physician, specialists, and any other healthcare providers as needed. As the patient, you co-create the goals outlined in the care plan with your case manager, and control which providers receive this. Care plans are tools that can ease communication between different providers in different settings. You can call your case manager as often as you need to clarify, enhance and receive help.
~ Jane Rosenblum, LCSW (Licensed Clinical Social Worker) and CCM (Certified Case Manager)