The Ignominy of Illness, or Aging--Take Your Pick

The last three weeks have been some of the most difficult three weeks I've had in a long while.  I would like to say that John's loss of a job and subsequent year-long litigation tops it all, but I do think that was much more John's sole trial than my own.  It was so hard on me, but ultimately, everything came down to John.  Along the same track, my lack of health falls squarely on my own shoulders, and like John, there's not much that anyone else can do about it.

I've had health problems my whole life.  I believe in the old days, I would have been described as "delicate".  However, I am anything BUT delicate when it comes to how I push through it all to maintain as normal of a life as possible.  It's the old self-coined adage that not only do I share with others, but I remind myself: you can be a victim, and you can live the victim life, or you can be a survivor and thrive.  When it comes to my health, I feel like the proverbial punching clown: I get knocked down, but I keep popping back up only to be knocked down again.

Since May, my allergist has been aggressively treating my AERD.  The Dupixent was an obvious fail with the subsequent hair loss.  I quit Dupixent in October, and come November, previous to starting Nucala, I was sporting a double sinus infection. I have been unable to get rid of it despite a slew of medications.

For years, I've treated my chronic sinus infections with a three week course of steroids and antibiotics.  I don't know anyone who would ever choose to go through even a one week course of that hellish combo.  The steroids leave me irritable, unable to sleep, craving protein, and bloated, not to mention all of the long-term side effects that also occur (cataracts is a big one).  The antibiotics mess with my gut BIG TIME, and in a new and improved side effect, I get raging yeast infections anytime I take them.  It's unbelievable what I have lived through for years now, but in the end, it clears my sinuses until the next infection comes along.

With a new ENT working closely with my new allergist (hello, moving to Northville and being employed by a most excellent health system), they don't believe in having me suffer through things.  They want to treat things aggressively.  But wow, it's really hard on me.  No joke, there are days that I think it just might be easier to go back to the old way of just being sick all the time.

I already take 15 tablets or capsules a day for AERD or my hair loss (I was taking six before the hair loss).  FIFTEEN.  Eight in the morning, and seven at night.  Sometimes the hair stuff feels like snake oil, because I don't really see any difference, but at least the hair loss seems to be slowing down.

But with this sinus infection, I was given a week of Biaxin (I laughed at that dosage, knowing it wouldn't work, but I didn't say anything because I didn't want to be given steroids), and when that didn't work, I was started on two weeks of Cipro.  Cipro is kind of like the atomic bomb over Hiroshima (not trying to be politically insensitive here--it just captures the moment best).  It kills everything.  

Well, everything except the bacteria causing my sinus infection.

My allergist threw up her hands and told me to see my ENT.  It was beyond her scope.

At this point, I wondered if maybe the AERD symptoms were making me think I had a sinus infection, and I crossed my fingers as I saw Dr. Standring pull out the flexible scope.

One look up my nose, and he uttered, "Woah."  Yeah, I should've crossed my toes. And eyes.

So at this point, while I'm trying to swallow with no feeling in my throat, and catch the goo dripping out of my nose, he mentions something about a "compound pharmacy" and "they will contact" me.  Sure enough, a week later, with no medications for the infection in the interim, a box arrived on my doorstep.  Turns out, I have to open a bunch of capsules, dump them into a NeilMed sinus bottle (glad I still have SO MANY of those from sinus surgeries), then dump budenoside respules in as well, shake well, and shoot the whole concoction up into my sinuses.  It was one thing after my surgeries, when doing this would reduce inflammation and clear out my nose of all post-surgery gunk (since I wasn't allowed to blow my nose), but this? I have to leave the solution IN MY NOSE and assume all kinds of different positions for 60 seconds each while the solution works its way into my sinuses.

Yep, I remember the first time I saw Dr. Standring, and he told me that we would need to "try something else" if the steroids/antibiotics didn't work.  It's almost like my sinuses heard him and accepted the challenge.

I used to laugh at my medication drawer next to my bathroom sink.  Several bottles which needed to be opened each night, but now? What I wouldn't give for the large and spacious countertops and vanity I had in our PA house to house the bottles, and sinus rinse kits, and respules, and sprays and inhalers.

The only hope I take from all of this is that, as I told the pharmacist when she asked me if I wanted to order 90 days at a time to save some money, IT'S ONLY FOR THREE MONTHS.  Seriously, I just need to get to the end of April.  And it should be the same for my hair.  Three more months, and I'll be at the end of the 3-6 month hair growth cycle.  

But of course, if history is any kind of teacher, there will be another health obstacle for me to jump over.

And I remember when I was 29 and went to the doctor's to have a baby and filled out NOTHING on my health history form.....

I was talking to Meg the other day, telling her all of the hellish things going on in my life, and she said to me, "You need someone to just tuck you into bed for two weeks and take care of life for you."  It almost made me cry....except crying always causes a sinus infection.