Bad day

[Victoriaitsnosecret]

This week was kind of tough for me. My hands were bothering me. I couldn't sleep well even though I'm exhausted. It's 4 degrees in Boston and I wake up wet with sweat. I had a headache for like 8 hours last night. I can't take Advil because I have to have surgery to remove skin cancer off my face. I know right! I've had this pain in the left side of my back that hurts so much I actually have to stop what I'm doing and rest it. Tylenol just doesn't cut it. My ears feel clogged. The only thing I did today was go from my bed to my chair and back to my bed. I used most of my energy to shower and after felt like I needed a nap. I'm just beat. I'm glad there are people that can relate.
Can you have a flare if you're not in remission?
Oh and if that's not enough...I went to the dermatologist for a surgical consult for the skin cancer. I overheard the doctor talking about the patient with Wegeners. She brought the whole team in to check out my dented nose. She even asked to photograph it. Can you imagine? The med students were all excited like little kids at Christmas!
Wegeners is so much fun! I'm going to try and sleep now! Hope you all are feeling fine!

[mama2005]

hope you get to felling better and the saddle nose and pictures is very very annoying I would not let anyone take my pics for two years till I got it fixed. hoping for a better day tomorrow.

[drz]

This week was kind of tough for me. My hands were bothering me. I couldn't sleep well even though I'm exhausted. It's 4 degrees in Boston and I wake up wet with sweat. I had a headache for like 8 hours last night. I can't take Advil because I have to have surgery to remove skin cancer off my face. I know right! I've had this pain in the left side of my back that hurts so much I actually have to stop what I'm doing and rest it. Tylenol just doesn't cut it. My ears feel clogged. The only thing I did today was go from my bed to my chair and back to my bed. I used most of my energy to shower and after felt like I needed a nap. I'm just beat. I'm glad there are people that can relate.
Can you have a flare if you're not in remission?
Oh and if that's not enough...I went to the dermatologist for a surgical consult for the skin cancer. I overheard the doctor talking about the patient with Wegeners. She brought the whole team in to check out my dented nose. She even asked to photograph it. Can you imagine? The med students were all excited like little kids at Christmas!
Wegeners is so much fun! I'm going to try and sleep now! Hope you all are feeling fine!

Sorry you have "run out of spoons." Those days are tough.

I can remember being "exhibit A" while in the hospital and having a dozen or two medical students and interns and residents visit most days. I felt good about it cause they need to learn to recognize this horrible disease early. Wonder if any of them did later on in their training or careers?

A lot of our meds increase our risk for cancer plus the numerous X-rays many of us had too.

GPA symptoms can wax and wane even when in drug induced remission in my experience, but the peaks and valleys are more pronounced when not in drug induced remission.

[annekat]

Reminds me of a time at the dentist when a dental student was sitting in with my dentist and the assistant during my preparation and fitting for crowns. I have a very small mouth, the smallest that most dentists have ever seen in an adult. They had to use children's molds to fit me for my crowns, or something like that. They were all commenting on my small mouth and making me feel like a freak show. I got more than a little crabby! So when I left, they let me pick something from the "prize chest". I picked a plastic ruler with all the US Presidents on it. LOL... I was 55 years old at the time. Of course, this was not as serious as anything to do with Wegs OR skin cancer.

Anyway, Victoria, yes, it is normal to have bad days and good days and small or not so small flares, increases in disease activity, while on meds and not in remission. Most of us have been through it I'm sure. All the fatigue, aches and pains, etc. are normal, too, and can change day by day whether you are in a flare or not. Just overdoing it one day can really wipe you out the next day, too. And overdoing it for a few days can wipe you out for several. Again, you haven't had Wegs for long and are doing much better than many of us at that stage! So, rest as much as you need to, and keep the faith!