You Say Remission, I Say Remission-ish
For the past few months, I’ve been having a lot of pain around my ribs. I may have dislocated a rib, causing everything in the area to tense up in response (I’ve done that before), or it could be costochondritis (inflammation in the connective tissue around the ribs), which is easily possible with an inflammatory disease like sarcoidosis.
My rheumatologist initially ordered a chest X-ray to be sure there wasn’t any fluid buildup, which can happen with autoimmune conditions. There wasn’t any. When the pain still hadn’t improved much, even with the addition of a topical pain reliever and a nonsteroidal anti-inflammatory, she ordered a CT scan.
The CT was also negative — a result that many with chronic illnesses are frustratingly familiar with. Apparently, my chest is unremarkable. Never has such an unflattering statement been such a source of relief! But the report went further: My lungs are clear, my heart is “within normal limits for its size,” and “there is no significant axillary, hilar, or mediastinal adenopathy.”
Wait, what?
I was really confused by that last part. After eight years of trying to figure out what was wrong with me, it was a 2015 chest X-ray showing bilateral hilar adenopathy (enlargement of the lymph nodes of the pulmonary hila) that led to the suspicion, and eventually the diagnosis, of sarcoidosis. That moment of “grelief” (grief and relief) left me both vindicated and scared.
When I read the recent CT report, my head started spinning. No hilar adenopathy. What does this mean? Was it all a mistake years ago? Does that mean I don’t really have sarcoidosis? Was this just another in the long line of misdiagnoses spanning nearly a decade? Am I back to square one, knowing that something is wrong but having no idea what that something is?
I reached out to my doctor to try to make some sense of all of this. No, she reassured me, because it was confirmed through a skin biopsy in 2015, I do indeed have sarcoidosis. (Phew?) It’s possible, she explained, that all the medications I’ve been on for so many years have put me into remission.
Remission, wow. That’s supposed to be a good thing. Remission is celebrated in the cancer community when patients are considered cancer-free. For others, it’s when the disease is gone, or its severity has decreased so greatly that it no longer affects the patient. Remission is an elusive goal for people with many chronic illnesses, including sarcoidosis.
But it should also mean feeling better, right? Apparently not.
It’s hard for me to say I’m in remission when I still have so many symptoms. I still have pain, literally from head to toe. I still have debilitating fatigue on a daily basis. I still have a variety of skin lesions and rashes. I still have limited mobility. I still have severe temperature dysregulation. I still have dizziness and weakness. To me, it’s more like remission-ish.
Maybe my lungs are in remission, but not my skin, autonomic nervous system, joints, or muscles. Maybe my sarcoidosis is in remission, but not my arthritis, dysautonomia, endometriosis, fibromyalgia, irritable bowel syndrome, migraine, or neuropathy.
All of that leaves me wondering: Is this the closest I’ll get to feeling better?
It’s easy to get bogged down with that kind of thinking, imagining a lifetime filled with so much suffering. But I must remember that my life isn’t really “filled” with suffering. Yes, I do suffer — but there is so much more to my life than that.
What my life is really filled with, along with those awful symptoms, is love — for my families by birth, marriage, and condition. Though no one wants to get this disease, the sarcoidosis family is incredibly strong and supportive.
My life is filled with joy, from simple things like matching my eyeglasses to my face mask, to the immeasurable satisfaction of helping another sarcoidosis warrior feel seen.
Just a small sample of Kerry’s coordinated collection. (Photos by Kerry Wong)
And my life is filled with hope, always hope. I hope the Yankees win the World Series. I hope the supermarket has my favorite cream cheese in stock. I hope COVID-19 gets contained enough for me to feel comfortable dining indoors. I hope we can return to in-person sarcoidosis awareness events next year. And if my lungs can go into remission, I can have hope that my other body parts and conditions can become remission-ish, too.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
About the Author
Comments
Michelle Owens
Thank you for sharing your story! I have felt much like you about remission. At first I was so excited we achieved remission and then I learned that is a very fragile goal. Grief...definitely grief when I realized remission doesn't mean what I thought it did. I now embrace its clinical meaning and know that even for cancer patients it doesn't mean they are cured, it is only an absence of active disease. I am starting to embrace that even when I achieve the clinical meaning I won't achieve no more treatments. Treatment for me will be lifelong which means the balancing act of treatment vs. side effects is super important. I have had to redefine what quality of life means to me and work to ensure that the side effects are balanced to ensure I have an acceptable quality of life. Unfortunately, that means we are still looking for a treatment path my body will accept and keep me in the elusive but coveted remission.
🦋 Kerry Wong
That's really it, Michelle - it's about balance, and finding the combination that is best for our quality of life. Knowing that there is no cure for a disease like sarcoidosis can feel crushing ... but acknowledging that reality and doing our best to live within it may be the only way to find that balance.
~🦋
Andrea Lowery
Ive had all the blood tests, CAT scan and most recently a lung biopsy. All results point to sarcoidosis but even the lung biopsy isn't completely definitive. My pulmonologist said this is fairly rare but he is pretty convinced it is sarcoidosis a is treating me with prednisone. Has anyone else had this much trouble getting a definitive diagnosis?
🦋 Kerry Wong
Sadly, Andrea, yes - because this is a rare disease, most doctors don't know much about it. It can take months to years and multiple doctors to get a diagnosis (it was about 8 years for me). It's great that you have someone who is willing to treat as if in the absence of diagnostic evidence. It can also be helpful to reach out to one of the Centers of Excellence if you're able. Hope the prednisone is helpful!
~🦋
https://www.wasog.org/about/wasog-centers-of-excellence.html
Janet Bradley
I was diagnosed 18 years ago with granuloma in my lung and the Dr that treated me is no longer practicing. Lately I have been experiencing some lymphatic problems with swelling I’m my legs and pain in my left chest wall. I have been waiting for 2 years to see a pulmonary specialist in another city. I am extremely tired all the time.
🦋 Kerry Wong
Oh, Janet, I'm sorry you're struggling so much. I hope you're able to get to a specialist soon, and they're able to give you answers and relief.
~🦋