Slow News Days

I’ve been mulling over what to write for an update. I don’t have much of one, but here are the little things I have to say. I’ve just done my first 4-week infusion of Orencia. Previously, infusions were biweekly. It still wipes me out when I get home. I have yet to figure out if it … Continue reading

Lessons Learned

It wasn’t the first time, but it was the last time I ever want to say the word “hives” when describing my disease to someone. That even goes for conversations where I’ve mentioned every single symptom and say “hives” last. That’s it. No more! (I’m pretty sure everyone with urticarial vasculitis and/or autoimmune urticaria knows … Continue reading

Another New Drug; More Guinea Pigging for Me

It shouldn’t come as a surprise to me, yet there I sat in shock. “I’ve been doing so well.” Yes, I have these strange new symptoms, but they’re nothing compared to where I was 12 months ago. So, why not keep my magic cocktail longer? My newest symptom is “vibration” in my lower legs. I … Continue reading

“What if Your Healing Comes Through Tears?”

I’d love to recap last week’s Rare Disease events as part of Rare Disease Legislative Advocacy and Rare Disease Day, but there’s a lot. I’ve got a lot of writing, handwriting and typing, to do as well as connections to make by email and phone with all the wonderful people I met last week. It … Continue reading

Bullous Pemphigoid and Antihistamine-Resistant Chronic Urticaria

When my symptoms were at their peak last year, Superman became obsessed with researching all the possible diagnoses. Among others, he found and listed bullous pemphigoid, an autoimmune blistering disease as one, to confirm or rule out. Here’s a very good article he found and took with us to my appointments at Johns Hopkins. Of course, I … Continue reading

Dapsone Risk, Hemolytic Anemia

Hemolyitic Anemia just one of the risks of taking Dapsone, a commonly used medication treatment for Sweet’s Syndrome, Urticarial Vasculitis, Chronic Urticaria and other skin diseases. While this drug has done wonders for me and others who have taken it, the risks may develop into new symptoms. Then you must ask  yourself: “Are the benefits … Continue reading

Dapsone Risk, Methemoglobinemia

During the last year, several people have asked why I stopped taking Dapsone, why I was hesitant to restart it, and why I’m restarting at a low dosage with slow increases in dosage. The risk of taking the medication Dapsone, used for the treatment of leprosy, malaria, and the immunosuppression-induced infections of Pneumocystis carinii and … Continue reading

Scratch and Stiff

It started yesterday and got worse overnight. I’m having a moderate breakout. It’s no fun. I have some itchy hives, some painful ones, swelling and joint pain and stiffness. I didn’t sleep well. This is the worst it’s been since January. Superman had to remind me today that as miserable as I am right now, … Continue reading

We Are All Liars!

We Are All Liars!

Do you have chronic illness? Yes? You’re a liar. I’m a liar, too. The problem with chronic illness is that it’s just that…chronic–always with us. If you could talk to your old self, the you before your illness, your old self would be freaking out about all the symptoms you’d be describing and extremely sad … Continue reading

Getting the Most out of Doctor Visits

NEW & FREQUENT-FLYER PATIENTS Updated April 24, 2013 Make a list of your most pressing concerns/symptoms List current medications, dosages and frequency List discontinued medications When started When discontinued Why discontinued Side effects? Bring photos (digitally or in print) Bring medical records Organize records with most recent dates first By specialties Labs: Highlight date collected … Continue reading