Did you ever have to wait a long time for a diagnosis? My recent diagnosis took 20 years to figure out. #lupus #SLE #wait #pain #swelling #unexplainedmedicalproblems #oneword2022

Did you ever have to wait a long time for a diagnosis? My recent diagnosis took 20 years to figure out.

Did you ever have to wait a long time for a diagnosis? My recent diagnosis took 20 years to figure out. #lupus #SLE #wait #pain #swelling #unexplainedmedicalproblems #oneword2022

Why Reading Books Can Unravel Mysteries

Costochondritis.

Pericarditis.

Unexplained rashes.

Incredible chest pain.

Pleurisy.

Fevers and swelling.

Joint pain, but no arthritis.

Come-and-go food allergies.

Chest pain (but a super-healthy heart).

Weakness in my hand and arm.

For almost twenty years, I’ve experienced these symptoms. Sometimes individually, sometimes three or more at once. I’ve been scanned, electrocardiogrammed, stress tested, prodded, tapped, and historied. Each time, the diagnosis ended up inconclusive (or what the doctors called a ‘garbage diagnosis’).

Each time the pain or problem attacked me I would have to wait to see someone. And when I did get in to see a doctor, they would often act as if I had faked the symptoms in search of prescription pain pills. I don’t do pain meds of any kind unless I take Tylenol post-surgery.

Sometimes, I would have to wait so long to get in to see a specialist, the symptoms had disappeared. The specialist would refer me to another type of doctor, who also couldn’t figure things out. And so, I lived with the occasional intense bouts of pain, the weird symptoms, and figured I’d never know.

And then I read The Body Keeps the Score, by Bessel van der Kolk, M.D. His research and interactions with patients as a psychiatrist have shown how our bodies can change because of trauma. Van der Kolk makes it clear trauma comes in all different shapes and sizes—physical, emotional, first-hand experience, or trauma from a loved one’s trauma.

I didn’t experience physical trauma 20 years ago, but I did experience caregiver trauma (emotional) while my husband struggled through a catastrophic cancer diagnosis.

My mysterious pains, fevers, and complications surfaced within a year of his miraculous recovery.

So Why Did I Have to Wait so Long?

Did you ever have to wait a long time for a diagnosis? My recent diagnosis took 20 years to figure out. #lupus #SLE #wait #pain #swelling #unexplainedmedicalproblems #oneword2022

While reading the book, I came across a reference to diseases caused by trauma. The word Lupus jumped out at me. For the past four years, I’ve suspected the culprit to my traveling joint pain, chest pain, weakness, and swelling might be Lupus or arthritis. But with no close family members who suffered from the disease, I figured I had no reason to have it.

At one point, I even visited a specialist at the Mayo Clinic in Phoenix. When I questioned her about arthritis, she informed me I was too flexible. A few years later, an urgent care physician ordered a few tests and told me to take the results to my primary care doctor.

I did. He glanced at the test results and prescribed a pain killer. After filling the prescription and reading the educational material, I dumped the pills down the toilet. I didn’t want a pain killer, I wanted answers. I would have to wait another five years before I got them.

Finding a rheumatologist in a sparsely populated area seemed impossible, so I looked closer to a retirement population and found one in February. After a slew of tests, I went back for the results on Monday.

Sure enough, my suspicions proved correct. I have Systemic Lupus Erythematosus (SLE). For the past six years, I’ve managed to avoid major flair-ups through healthier eating, stress management, and getting more hours of sleep each night.

According to the CDC, many people have to wait years for a diagnosis because Lupus doesn’t affect everyone the same way. Specialists must run a battery of tests, take a detailed patient history, and perform a physical examination. It took a rheumatologist to put all the pieces of my medical puzzle together and ask all the right questions to figure out the correct diagnosis.

Do I Like Waiting?

No, I don’t like to wait. But I know God is faithful and will give me answers in his time. For now, I rejoice because I have a diagnosis (I don’t enjoy being the patient doctors pat on the head and prescribe pain pills to). I have a medication that will allow me to travel to exotic places and not get malaria—and it will keep my autoimmune system in line, so it stops attacking me. Best of all? An anti-inflammatory diet includes yummy things like turmeric, cayenne pepper (pretty much all peppers), mushrooms, berries, veggies, and chocolate.

I’m still learning more about Lupus, and I’d love to hear from you if you have it. What challenges do you face? What works best to control your flare-ups? I’d also love to hear if you had to wait for a diagnosis for years and years.

Do you ever feel like a medical mystery? It took 20 years before a doctor finally found a diagnosis for me. #lupus #SLE #oneword2022 Click To Tweet

13 Comments

  1. Anita, thank you for sharing your story. This must have been difficult to go through. Thankfully, you have God who you know loves you, and you trust in Him. I don’t have a mysterious illness, but sometimes I feel like I do. Who knows what will turn up later, but your story inspires me to trust God no matter what.
    Deborah Rutherford recently posted…Spring in My New HeartMy Profile

  2. Wow, I am so sorry the diagnosis took so long. I’m glad you have it now and have ways to deal with it.

    I don’t have lupus, but it was one thing they tested for years ago when I had an acute attack of transverse myelitis. My ANA antibodies were high, but not in the lupus range, so I had to see a rheumatologist again in 6 months. The ANAs were back to normal and he ruled lupus out.

    I was thankful to have a neurologist who understood transverse myelitis, especially after I researched it and found a community of other TM patients online. Many of them, especially teenagers, had been told their symptoms were “all in their head.” So frustrating.

    I’m with you on wanting answers rather than just being prescribed pills. I don’t mind medicine if it’s really needed, but too often doctors want to treat the symptoms without figuring out the real problem. I’ve thrown away medicine, too, after reading its side effects.
    Barbara Harper recently posted…Laudable LinkageMy Profile

  3. I just finished reading the Kindle sample of that book. Sounds so thorough. I’m sorry to hear you have Lupus, but I can imagine the relief of finally having a diagnosis, and now a plan to move forward. That was a long wait. I’m glad you didn’t give up trying to find out what was wrong. I am thankful for our health care professionals, but it is discouraging to wade through the process when you don’t have an easy-to-diagnose illness. 🙁
    Lisa notes recently posted…Share Four Somethings—March 2022 —Grace & Truth LinkupMy Profile

  4. Anita, I am sorry it took so long but I am glad you now know and can have a plan. Not quite the way we want our word, “wait”, to unfold. I am waiting for a diagnosis as well for a loved one. I am so grateful God is with us in the wait and has gone before us. He sees and knows it all already and will bring the answers we need.

  5. I’m so glad you have a solution, Anita! And a workable plan moving forward to prevent flareups. I’m so sad to hear of the long delay with its accompanying frustrations. I appreciate the book recommendation as I’m walking with a family member that is on the road you have been on which reminds us that doctors are “practicing” medicine and that the experts aren’t always the key. Sometimes God uses books to bring forth the key information we need for recovery.
    Lisa Blair recently posted…6 Spring Bible Verses on God’s ProvisionMy Profile

  6. My mom had lupus too. Fried foods, soy products and aspartame could flare the disease. I’m sorry you had to wait so long for your diagnosis.

    I have this month finally been diagnosed with histamine intolerance. I now have a strict diet and I hope that I will not have temperature, blood pressure and intestinal problems one day longer. But I have to learn reduce stress too.

    God bless you
    Aritha recently posted…Lentebloemen in je hartMy Profile

  7. So glad you finally are diagnosed. And now can take appropriate steps to help yourself more. It reminds me that we have to be diligent in our Healthcare and not sit back waiting for the doctors. That book also helped me realize how my body deals with stress and past trauma. Our bodies are wonderfully made and so many things affect them.

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Anita Ojeda

Anita Ojeda juggles writing with teaching high school English and history. When she's not lurking in odd places looking for rare birds, you can find her camping with her kids, adventuring with her husband or mountain biking with her students.

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