cup running over

The last month was busy and boy, does it feel good to say that! Busy is relative, of course. But compared to hours of naps and the minimal function I had in February and March, August was a downright workout. 

Late July, I finally started noticing that I felt better. I could tell a difference even upon waking up in the morning. I had the energy to do something and didn’t feel like I needed to stay in bed for a couple more hours or nap during the day. Though, my energy was short lived once I actually tried to do things. I would get wiped out quickly and an errand or two would require a rest time afterward. But still, it’s progress and feels so good not to feel terrible! 

Mid-August I hosted Camp Kiki for my niece and nephew. They came to my house for three days of fun. We went to museums, the pool, and the Eno, watched movies, and had a great time making memories together. But by the end, I had no gas left in the tank and everything hurt. But if I’ve learned anything over these past 7 months, it’s that sometimes, depleting what’s in the physical cup is worth it to fill up the emotional one. 

The last month has been full of doctor appointments too, which can really drain the mental cup when trying to take in all the information, get the med schedules right, and remember that new prescription the pharmacy has texted about 4 times now. I was back at my super enthusiastic ENT for more tests and results. I did a round of allergy tests for 9 kinds of mold and fungi. No surprise – I’m highly sensitive to all of them.

They injected me with the antigens and could potentially go up 4 levels until I hit a 7 on the scale and it wasn’t safe to continue. I hit 6s and 7s with the very first level (which he exclaimed he never sees) and even got up to 9 on a few. This was VERY exciting to the ENT, though it gave me full body aches and a migraine after a couple days in my system. While he apologized for the pain, he was so energized that I continued to be an “interesting” patient. His joy at getting accurate data does make me happy though, and I so appreciate a doctor who’s willing to look deeper to figure things out, even if it hurts physically. Score one for the emotional cup. 

The CT scan of my sinuses showed that I don’t have a fungal ball (thank God!) but did have a lot of other things going on in there. The entire right side of my head has issues. My right  frontal sinus (above the eyebrows) has been so inundated with fungal infection over time that it never fully formed. (Did you know your sinuses continue to grow and form until you’re 35 years old?)  The right side was about half the size of the left and more full of inflammation and congestion, though both had fungal infection present. My right side nasal passages are nearly fully blocked due to massive inflammation. So even if the frontal right sinus could drain, there’s nowhere for it to go to get out. Now, I’ve learned through this process, bodies are crazy and can work really hard at staying alive. With nowhere for that right frontal sinus to drain, it started eating away at the bone between the frontal sinuses so the right could drain to the left and get out of my head. It has almost disintegrated the bone completely but there’s still a tiny sliver left. How WILD is that?!  Bodies are weird.

All this means more fungal treatments for me, which will drain down that physical cup again.  Special meds for every hole in my head (ears, throat, nose, tongue) plus another round or two of oral anti-fungals and hefty antibiotics (sorry, gut health). Once we get the fungal infection down, I’ll have a sinuplasty to open up my right side and shift a bone back into place that’s out of whack due to a broken nose from a game of chicken fight in the pool as a teen. The doctor is also confident that he can eliminate, or at least nearly stop, my migraines. He pointed to a specific place on the CT scan and said “there…I can see your migraines right there!” The turbinates inside the nose have approximately one gajillion little nerve endings. My turbinates are so swollen and inflamed that they are extremely close to touching the bone in my nose on a good day. If I experience any additional inflammation from allergens, foods, heat, etc, they swell even further and touch the bone, making those nerve endings holler. Then, boom, migraine! And often a multi-day migraine since inflammation from those triggers doesn’t usually stop on a dime. My headaches have always felt like they start in the roof of my mouth in what feels like the space between my mouth and my nasal passage (a fact that was routinely ignored over the course of a year working with a migraine specialist). Turns out, that’s exactly where they start. With the help of antifungals, we’ll reduce the inflammation. Then, combined with the sinuplasty, we might just solve my migraines altogether. While I’ve had a lot of life altering treatment this year, that one might just be the most promising for immediate relief! Another drop in that emotional cup. (And if it exists, another in the “I told you so” cup that I imagine delivering to all my previous doctors one day.)

I had more lab work recently and I’m excited to say that my A1C is sitting at a very happy 4.8 and is back to normal after my body’s freak out this spring. I’ve been able to slow down on mold treatment enough to pull back the stress on my body and find a happy medium between treatments and rest. My thyroid is still a moving target but it sure is happier than ever before in 10+ years of treatment. I’ve lost the 70 pounds of weight and full body inflammation I gained in the last 1-2 years before I started treatment and I no longer have any swelling (read: my shoes and rings fit again!). For all that, I get gold stars from my Integrative Medicine Clinic. And I get to start removing a few drugs and supplements from my regimen, starting with getting rid of insulin completely. I still have 10 drug reminder alarms set throughout the day, but less pills with each ring is a good thing! Mental win!

It was so nice to feel better going into my annual Labor Day beach weekend with my college roommates. We’re at year 22 of this trip and these girls continue to be such a mainstay in my life. Once again, I drained the physical cup with late nights and full days but gained a big fill up in the mental and emotional cup. I didn’t move much and stayed in my pajamas all day on the Tuesday after to start recovery and I continued to lay low all week. But it’s not even a question about it being worth it. My grandmama often says “my cup runneth over and my saucer also” when the gifts of life are overflowing and abundant. Having incredible support from my Caldwell St roomies and other dear friends and family through this has kept my emotional cup so full that sometimes it runs right over the saucer. It fills in the gaps when the physical and mental are so draining and grueling. While there’s still no set end date in sight on this road to recovery, the certainty that all of my cups continue to be filled gives me the confidence I need to keep moving forward toward healthy.