#autoinflammatoryawareness

Functional Anesthetic Discogram ✔️

I hate this picture. I'm puffy and tired from my flare-up. My surgical scars on my neck are showing. Yet, I still want to post this because it's so important to show people all sides of yourself. If I only post my "best self" on social media, I'll constantly be trying to live up to something that is unattainable.

People have often asked me (with good intentions), "Are you better yet?" and are surprised when I say no. Chronic illness is chronic; there is no cure. That doesn't mean I will be sick forever, but as of now, there is no cure for my disease and limited treatments available. There are treatments for my symptoms though, which is why I got this diagnostic procedure done.

Life isn't always pretty; sometimes it's puffy and red and exhausted. These past couple weeks, I caught myself trying to find "happy" pictures to update my Instagram with. Then I remembered how important it is to share all types of photos. Today is day 16 in the hospital. I'm finally nearing the end of my flare-up and starting to feel more like myself. This flare-up consisted of hyperpyrexia (fever of 105ºF), hallucinations, lymphadenopathy, lymph node biopsy, medication trials, pain, pain and more pain. More diagnoses were eliminated, but even more questions remain. I will most likely be seen by a top doc at the NIH, which hopefully will bring more answers to light. I have to say, though, how incredibly lucky I am. I have access to top notch healthcare, I have the support of friends and family, and I have an entire team of doctors across the country still rooting for me and not giving up. Hopefully, I'll be out of here soon. Thank you to everyone who has reached out, come to visit, and just been overall amazing humans.

Yesterday, I received my genetic test results; it cost $250 and analyzed 26 genes related to auto-inflammatory diseases. In a big grey box it stated, “Negative result. No pathogenic sequence variants or deletions/duplications identified.” My heart sank, then lifted, then sank again and then broke into pieces. Every time I receive a negative test result, I go through the same wave of emotions. It’s not that I hope I have a terrible disease or some genetic mutation that I could potentially pass along to my children, but I’m hoping for an answer to this mysterious illness that has taken over my life. It’s a bittersweet feeling when my sixth hospitalization in the past few months results in no conclusive findings. I’m relieved that I wasn’t diagnosed with a serious illness, but I’m left with doubts about what the heck is going on with me and unanswered questions about my future.  The hard part about many of these tests is that in fine print it says, “This negative test result does not eliminate the possibility that the individual’s condition has a genetic component. Clinical follow up of this individual and their family members may still be warranted.” So, essentially, I spent $250 to find out that science isn’t sure what I have (or don’t have).

I remember the first time I learned that doctors didn’t have the answer to everything. A similar experience to when you realize your parents aren’t superhumans, there’s a part of you that loses a little faith and another part of you that is humbled by all that science has discovered so far and even more appreciative to be alive now as opposed to 50 years ago.

When my brain tumor grew back just 6 months after having it surgically removed, my doctors presented me with two treatment options: surgery or radiation. Due to the aggressive nature of my tumor and how rare it was, my top-notch doctors at NYU told me that they just didn’t know which one I should choose. Frustrated and afraid of making the wrong choice, I went to four other hospitals including Johns Hopkins and the NIH for second, third and fourth opinions, each time, hoping for a clue as to which treatment would be best for me. Ultimately, the decision was made for me because as time went on, my tumor became inoperable and forced me to undergo radiation.

After the whole brain tumor fiasco, I was sure that the rest of my life would be smooth sailing.  How could it not be? In my journey to diagnosis, I was faced with a torn esophagus, a collapsed lung, pnuemomediastinum, subcutaneous emphysema, severe neuralgia, and migraines. When my tumor grew back, I also experienced papilledema of both eyes and dysfunction of cranial nerves 9-12 (paralyzed right vocal cord, loss of taste on the back third of my tongue on the right side, inability to shrug my right shoulder, etc.).  Everyone I spoke to reassured me that this would be my biggest obstacle in life and pointed out how lucky I was that I experienced all this adversity at a young age, when I could not only recover faster and more fully than someone who was older, but that I would bounce back a stronger woman and be able to help others who experience obstacles later in life.

Once I recovered from radiation, I faced a whole new set of issues. At 22 years of age, nobody informed me of the dangers of getting back on my feet too quickly. I had decided to take an anatomy and physiology class at community college to learn more about my body and to try my hand at science – a topic that had never come easily, but that sparked a newfound interest I never expected to hold. I remember walking up the stairs to my class, my backpack stuffed to the brim with textbooks and binders. I had this strange dull ache in my leg the past week or so, but didn’t think much of it until one morning when I woke up in excruciating pain. I called my mom from my bed, crying from the pain shooting down my leg, unable to walk. Long story short, I was diagnosed with sciatica – a painful condition I only recalled older people complaining of. No doctor I went to was sure of where my pain was actually coming from. After multiple MRIs and CT scans, the only findings were two minor disc bulges between L4/L5 and L5/S1 and a minor degree of degenerative disc disease. I struggled for the next 3-4 years with episodes of terrible pain and underwent numerous treatments including epidural injections, SI joint injections, physical therapy, acupuncture, chiropractic treatment, spinal decompression therapy, and a botox injection into my piriformis muscle. The theory was that I had jumped back into my regular routine too quickly and my back muscles weren’t prepared for the spike in activity, resulting in an inflammatory response that aggravated my sciatic nerve.

Throughout all of this, I unsurprisingly fell into a deep depression and was diagnosed with major depressive disorder and generalized anxiety disorder (among other things that I’ll probably share more about in another post). After receiving treatment, I learned to view my health struggles as positive experiences. They set me on a new career path in medicine, helped me realize how strong I really am, and also filtered the people in my life, leaving me with only those who supported me no matter what and got rid of those fair weather friends.

Bone marrow biopsy ☑️

I haven’t exactly been looking forward to having a bone marrow biopsy, but I’m certainly glad it’s over with. The doctor and nurses were really funny, which put me at ease. The doctor walked in and said, “I started reading your file…but then I got tired.” I laughed and said that I didn’t blame him. He replied, “No seriously though, we had a 90 year old patient in here the other day whose medical file was thinner than yours!” 🤣

I was sedated for the procedure, so I really didn’t feel a thing during it (or at least I don’t remember feeling anything). Apparently it took them an extra 10 minutes to sedate me than most people (most likely due to my tolerance from having had so many procedures), so I was extra loopy when I woke up. They say the truth comes out when you wake up from anesthesia and Alex told me the first thing I said was, “I’m so happy I get to marry you.” 😍 It’s so hard to express how grateful I am that someone as wonderful as Alex will always be by my side.