Bum ba da daaaaaa! TSING!
(That’s the rumble of a bass drum followed by a cymbal in case you couldn’t figure that out)
EczeMAD will be my video blog about living and dealing with eczema (Read here). I plan to produce those short videos alongside this blog. Both the typed and the video will complement each other.
I like writing. I prefer it.
But there’s some things you just can’t quite capture with words.
If a picture is worth a thousand words, then imagine how many a video is worth.
Woohooohoo I know by going on YouTube I’m really putting my skin out there. I’ve watched videos as simple as an animal dancing– and the video’s comments would range from supportive to downright hideous- the YouTube community can sometimes be crazy. But at the same time I hope this will be therapeutic for me as well as create a community with other ‘itchy skin friends.’
And as always– I’ll most likely be inconsistent in posting videos. So please be patient.
So follow me as I rant and muse, experiment and succeed, and try and fail through my life with severe eczema… and hopefully heal.
Warning: a few very real and somewhat graphic photos ahead
“Tomorrow. Tomorrow. I love ya… tomorrow,” like the little orphan Annie I’m very hopeful for my future. Hopeful enough to sing-type!
A few days after my last post I was prescribed CellCept (gen name: mycophenolate) a low-dosage oral immunosuppressant which I’ve been taking daily. In addition I was given an antihistamine (gen name: Levocetirizine) to help calm my itching.
This past month has given me a ride.
I was in a miserable place before I went on CellCept: thinning skin, weeping wounds, dryness everywhere. I had heard good things about CellCept. I was ready to rise from the eczema depths…
… and instead found myself in a deeper hole.Two weeks into this promising medicine my legs became a wreck. Every morning I hated looking at the mirror because spider-web-like lines of dry skin crisscrossed my body everywhere. Sleeping sucked—my body was strongly emitting heat and having the blankets around would create an insulation of humidity too hot to be comfortable, but then I’d freeze as soon as I removed them. Adding insult to injury my body was strongly giving off an unpleasant odor that seemed to become more evident as I laid in bed; probably the smell from my weeping wounds. Every few nights I had to change my sheets from it absorbing all the smell. I was a zombie at work living off four hours of sleep a night.
I whined. Why was this happening to me? I was doing everything right. I still followed my skin care routine (all here). I gave up gluten for this??? Online research of CellCept revealed it took some people weeks to notice any change so I clung to that hope.
Now four weeks later there’s improvement!
Okay—I’ll admit—externally I still look bad. These pictures still seem to show a rather crispy Pyra-Danny. People who haven’t seen my eczema journey will throw pity eyes my way mixed with shock. But anybody who can compare me from a months ago will know—this is the best I’ve been without Prednisone in months.The weeping has mostly stopped. No more hideous odor at night. (I’m getting closer to a good sleep). My skin is thicker and rougher—so it still has that blotchy, pinkish, graying color tint—but at least I don’t look sun burnt. My skin isn’t so thin it’d break as soon as my fingernail grazed it. Showering isn’t as painful as before. Before when I stayed in place too long (my work desk, sleeping in bed, driving in the car) often I would leave a trail of dried, skin flakes. Now I still leave a trail of dried skin… but mostly it’s now a fine sandy texture… I consider that an improvement. My body is still sensitive to temperature and certain clothing but not as exaggerated. So yes I’m still dry and itchy, but I’m definitely not so miserable. I actually want to face people again. I actually want to work out again. These mental changes are the biggest improvement. I hated being depressed. Of course CellCept still has its worries. Since it’s an immunosuppressant I have to make sure I stay healthy because my chances of getting sick are greater. My allergist also warned me to not try and have kids even for a good year AFTER stopping the medicine.
Although the changes have been slow and small, I’ve seen some improvement during a time when my eczema has been doing the opposite. I’m continuing with CellCept and hopeful for my future.
WARNING: A couple very real graphic photos ahead.
I’m bracing myself—I’m nervous. I’m scared.
Why haven’t I posted any eczema statuses recently? I’ve been on drugs for the past month and a half!
After months of mostly following a strict diet and skin care routine, I had hope for improvement back in April. Then suddenly in May areas that were never itchy before (such as the tops of my feet and my belly) started getting rashes yet I hadn’t changed anything in my daily routines. By June my skin was so thin that it seemed if I scratched anywhere, the area would weep a clear liquid for the next few hours. Areas like behind my knees kept weeping despite my not touching it. I had crusts of dried liquid forming behind my legs. This went on for a couple weeks.
During a visit home, my family doctor saw my legs and immediately ordered me to take a bleach bath (which helps kill bacteria) as well as take Prednisone (an oral steroid) and an anti-inflammatory medicine (forgot the name) for two weeks. I already felt miserable and defeated I didn’t care what he gave me.
After two weeks the meds dried up and my eczema returned with vengeance. Worse—my face was now affected… I can’t hide my face! My cheeks, eyelids, and jaw line were dry and red. I wanted to vanish into the earth when a young grocery clerk at my Oriental Market looked at me and exclaimed, “You’re sun burnt!” Indeed- my whole body looked toasted and my skin was thicker and drier.
In addition, the weeping had returned. Plus a musky smell started wafting from my skin occasionally mixed in with a vinegar-like odor. My skin was flaking off so much I brought a mini vacuum to work so I could clean the surrounding carpet twice a day. And– was this related?—no temperature felt right. I was shivering in 90-degree weather yet my skin bordered feverish to the touch.
I begged an appointment with my Allergist who discovered I had a MRSA staph infection. He agreed with my Family Doctor and placed me on Prednisone again as well as something to fight the infection. Once again my skin responded almost immediately yet I have continued to be very, very itchy. But at least I’ve stopped flaking, turning red, and weeping.
But the Prednisone ran out two days ago.
I was told the drug should stay in my system for a while, but why has my itchiness increased three-fold since yesterday? Around my neck and chest my skin has already changed in thickness, texture, and color. But worse are the feelings of sadness and self-consciousness beginning to creep back in.
What’s happening to me? I’ve made so many changes to my lifestyle yet none of it seems to be working. In fact—I’ve been doing much worse than all my 29 years of living with eczema.
I’m bracing myself. I can do this. I have another appointment with my Allergist coming soon—I just have to hang in there and stay the course.
I was tired of listening to Tampa’s history. I’ve learned about the former lives of The Castle night club, Post Office, grave sites, etc… but I’m from nearby St. Petersburg. I’m more curious about the past lives of MY stomping grounds.
So when the History Bike Tampa group decided to temporarily switch their operations from Tampa history to St. Pete history last Saturday I leapt (pedaled?) at the chance.
About 100 cyclists of all shapes and sizes gathered at the Shuffleboard Courts (a historical venue itself built in 1924 and continues to be a photogenic icon of the city) where we met our leaders for the ride. And… soon we were off! Entire lanes were filled with our colorful waves before we stopped just outside Bayfront Hospital.
The theme for that day was ‘mounds’- and a glimpse into the lives of the natives who created them. The purpose of the mounds have been debated; from trash (those Fried Gator bones have to go somewhere) to foundations for important buildings (applying for canoe licenses). Not only was Bayfront sitting on a former mound but it was once named ‘Mound Park Hospital.’
Next, the stretch south on MLK Blvd wasn’t a fun ride because of the many cars streaming by within feet of my tires. Yet I enjoyed looking at all the community restaurants and shops we passed because I barely travel this area.
Brief stops at Lake Maggiore Park and Boyd Hill allowed us to take water breaks, stretch our legs, and use the restrooms. As we biked through a nearby neighborhood, out of nowhere a tiny park appeared housing another mound. The Calusa Indian Mound (also Pinellas Point Mound) permitted visitors to climb stairs to the top (less than 20 feet high). Nearby signs revealed the mound’s violent history in 1549 as a travelling Dominican Friar was clubbed to death on the site.
Later we entered another small park inside the tree-shaded, very pretty neighborhood of Driftwood. The leaders pointed out another mound except it was hidden behind a house. Apparently there’s way more mounds dotting Pinellas County than we could fit on a bike tour. It was eye-opening to see history resting in plain sight.
The Historic Bike Tour through St. Pete took almost three hours. We travelled almost 14 miles and I kept an average speed of 7pm—this was a very casual ride with enough breaks in between; excellent for children and elderly. The leaders were professional and energetic although one of the historian speakers was a bit awkward and giggly during delivery—probably nervous at presenting.
Whether you catch this group in Tampa or meet them when they return to St. Pete I totally recommend taking a tour. It’s only a $5 donation and I guarantee you’ll see areas in a new light. It’s a great way to explore… and you’re on a freakin’ bike getting fresh air! Worth it.