"I'm fine..."

Two simple words.

They’re probably the two words I say more than any others these days. When someone asks me, “How have you been?” I instinctively smile and reply, “I’m fine.” How do you explain what life feels like when your body is in agonizing pain 24 hours a day, 7 days a week? How do you put into words something that even you struggle to describe?

Sometimes someone will look at me and say, “You look great.” I smile and thank them. But inside, all I can think is… If you only knew.

If you only knew the pain that never lets up. The headaches that refuse to leave. The burning nerves that make your skin impossible to touch. The exhaustion. The fear. The mental battle that comes with wondering what symptom is waiting around the next corner. I sit in silence and think to myself, "What did I do to deserve this?"

Pain has become invisible.

The hardest part isn’t always the physical suffering. Sometimes it’s pretending that everything is okay because there simply aren’t enough words to explain what living like this truly feels like. Unless you are my family or very close friends who I talk to almost every day, most people won't understand what this is or what this feels like.

One of the reasons I haven’t updated this blog in several months is because staying focused has become incredibly difficult. Between the pain, the fatigue, the medications, and everything my body is fighting, even sitting down to organize my thoughts can feel overwhelming. There are so many stories I’ve wanted to share, but some days just getting through the day takes every ounce of energy I have.

Even things that most people look forward to ie: a dinner with family, a birthday party, a wedding, or a social gathering have become internal battles. Instead of excitement, my mind immediately starts calculating the risks...

• Will it be too loud?

• Will there be too many people?

• Will the lights trigger my headaches?

• Will the stimulation cause my symptoms to spiral?

• If I go, will I spend the next two or three days in bed trying to recover?

  • Will they have seating that can accommodate my left leg CRPS? I would rather go through the pain of hosting at my house, just so that I can be in a comfortable space...

Those questions run through my head every single time I leave the house. There have been countless memories I’ve had to miss because the fear of what my body might do has become just as powerful as the illness itself. Living with that constant anxiety is exhausting. It’s heartbreaking to say “no” to people you love—not because you don’t want to be there, but because your body simply won’t allow it.

Someone recently asked me how many procedures and treatments I think I have had over the last 4 years. When I stop and think about everything my body has endured, it’s honestly hard to believe...

• 46 lumbar sympathetic plexus nerve block procedures (spinal injections).

• 20 Intravenous Immunoglobulin (IVIG) infusions.

• 20 high-dose methylprednisolone infusions before my MOGAD diagnosis, when doctors were desperately trying to stop the relentless headaches.

• Spinal Tap

• Occipital Nerve Blocks

The amount of doctor appointments, including physical therapy appointments, is too high to even count. And then there are the surgeries that certainly were never on my bingo card...

• Left middle finger surgery (ORIF of my proximal phalanx) which was fixed with 3 screws and a plate. This ultimately led to CRPS in my left arm which had to be treated with 3 neck injections.

• The removal of an 11-centimeter necrotic mass along with my left ovary.

• And finished with a Total Thyroidectomy.

Each procedure came with hope. Hope that maybe this would be the answer. Hope that maybe this would finally give me relief. Some helped. Some didn’t. But every single one represents another chapter in a fight I never imagined I’d be living.

Every morning I wake up knowing this battle starts all over again. There are days filled with fear. Days filled with frustration. Days when the pain feels impossible to describe. And there are days when I have to dig deeper than I ever thought possible just to find the strength to keep going.

People often say I’m strong or that they can't imagine what I've been going through. The truth is, I don’t always feel strong and I can't imagine that I have been through all of this either. I try to keep fighting because giving up has never been an option. I continue to hold onto hope that somewhere out there is the treatment, the breakthrough, or the answer that will finally give me my life back.

Until then… If you ask me how I’m doing… You’ll probably hear me smile and say, “I’m fine.” But now you’ll know what those two words are really hiding. 💕💕💕

#crpswarrior #mogadwarrior #undefeated