Where's my satisfaction?
Sometimes my life feels like the song: Can’t Get No Satisfaction. Friday is yet another landmark day for us in our adventures with my newly troublesome sinuses. It’s beginning to look like my long honeymoon without surgery has come crashing completely down since October. I have a follow-up with my ENT Friday after lunch to decide if we need to be more aggressive with his reconstruction of my head.
The scoop
One of the most annoying things for the last year or more is the constant smell in my nose. It varies between smelling like a wet dog and soggy Corn Chex, depending on the infection of the month. Far, far worse are my headaches, even though they aren’t as persistent as the smell is. Every morning is a new day with a ton of gunk in my eyes, a completely stuffed nose, and that smell.
I take a lot of CF in stride, but this is getting on my last nerves. How many times can I tell clients that I need to block out some time for recovery, even though it’s usually only 3-4 days? I don’t want to become “that guy” who is unreliable because he’s laid up all of the time, but it is almost getting to that point from my headaches alone.
Clinic quick-take
I haven’t written my clinic update because I’ve been so buried, but it was on the 18th and they put me on 1500mg of amoxicillin per day because they suspected a staph infection was causing my 4% drop in FEV1, weight stuck at 122lbs (I was surprised they were sad at my weight), and 2 recent episodes of hemoptysis.
Immediately after clinic, we went across the street to my new ENT who did my surgery in January and he said that things are looking bad already but, like my other ENT, was mostly concerned about my headaches. He spent longer cleaning out one side than I’ve ever had in-office before (and he has really good tools). In the end, he agreed with the CF doctor putting me on antibiotics and said that if I’m not feeling better and clearer this Friday… bah-dah-dum-dum… he wants to put me under again and do extensive drilling this time to open up my frontal sinuses to drain better… daaahhhh-dum!
Great…
Where is the silver lining?
For once, I’m not sure there is one specifically related to this. I’m just a couple of days away from 365 days without pulmonary IVs, though I was on sinus IVs once, so maybe keeping my sinuses clear will keep my lungs clearer. Of course, I’m writing this while my head is pounding and I’m in full rage from my shot on Monday, but you get what you get when you come here: reality. My normally bright demeanor is tainted from two directions tonight, but maybe finishing this project I’m working on and getting paid will brighten my Thursday.
Feel better soon! I want to start seeing awesome updates on this blog soon! ๐
I’ll have an awesome update any day now. If I wrote more about my work, which would be a real yawner for most people, I’d have lots of good stuff. ๐
I sure hope you’re feeling better today. Sometimes we can’t see any silver lining in our trials. Sometimes they are just for the perfecting of our faith and nothing else. But I have to think that if they can get your sinuses working better then your lungs will work better.
No better, but I dug in and went the whole day without any Vicodin because I was being pretty active without needing to do heavy coding or design. Either one of those will send me over the top and need some relief so I can concentrate on something other than the icepick behind my right eyebrow.
Good news with the abx, though is that the Red Bandit hasn’t visited again.
Feel your pain…As I’ve posted before, my 6 year old can hardly ever get relief from his sinuses. He just had sinus surgery #8 and #9 is already scheduled for May. His frontal sinuses give him horrible headaches and he lives on Aleeve between surgeries. It is SOOOO frustrating. Oral abx don’t work so now he has a port for IVs. I hope the orals start to work for you….Megan
Thanks. Being allergic to NSAIDs forces me on to Ultram or Vicodin for them, though, so I feel like I’m playing with fire, but there isn’t anything else I can do for the pain. Thankfully, I haven’t shown any signs of dependency (I can go weeks without if the infections and weather fronts cooperate) and tolerate it well enough to fully function, though those closest to me can tell my personality changes a tad while it’s kicked in – just a tad.
I hope he gets some relief, too, because to just get off surgery and then schedule one months and months ahead is agonizing. If it’s bad enough to know he needs it in May, why not go right back in and fix it now, I wonder?
No one is judging you here! You are more than entitled to an off the norm post. I appreciate your honesty about how you are feeling. Sinus issues are a huge bummer when they can’t get corrected. John’s brother went through several issues much like what you are too. I hope you are able to get some relief soon.
Thanks, Rhonda. I’ll be posting an update to my visit today. Before I got
involved in the community, though, I would have thought I was alone in my
sinus suffering. It’s the only area of my health that I’d actually say I
“suffer.” Even though my FEV is pitiful, it doesn’t cause me any suffering
in day to day living. For that, I’m very thankful.