Okay, so I’m literally one week away from Dec. 5, which will mark 3 years of this TSW nightmare. I’ve recently been to infectious disease for MRSA; last major boil on chin began 11/3 which I took to derm who acted like I was insane and actually made the comment that by continuing to refuse steroids, “science speaks for itself,” I was risking developing an abscess in my brain and leaving my 3 children on the earth motherless!
Rheumatology ruled out major autoimmune, x-rays confirmed early osteoarthritis which is very normal for athletes, not a surprise. Endocrinology said my cortisol actually high, agreed steroids bad but sent me to the hospital for some IV test to rule out Cushing’s. She said she did not think I have that because I’m losing weight on paleo (another new thing). I’ve since received the result back that it was normal at 19.
Going through this list of doctors (all seen since 10/1/15), I couldn’t help but relate to the recent white paper presented by Dr. Rapport:
It is uncanny how much this nails it regarding the different stages I’ve experienced in the past 3 years. But now, I fear I must add one more…”when illness forces you to take the one thing you vowed you’d never touch again.”
I started getting a cold about 5 weeks ago that quickly turned into a nasty cough, then fever about 10 days into it, then ended up taking Z-pack, after also vowing I’d lay low on the antibiotics. The azithromycin didn’t do a thing, and I ended up with pneumonia. Since I was a child, I’ve had annual battles with bronchitis…but never like this. I coughed up blood for over a week, was incredibly weak with no voice. I’ve been taking breathing treatments 4 times/day and using my rescue inhaler the same frequency…just to get air.
Over Thanksgiving, my husband urged me to go to the family farm and stay in a cabin that always causes me to go into a downward spiral, no matter what state I’m in…and I went after major hesitation. I ended up in a full flare, from my chest up swollen and covered in rash, hives on my legs, right eye swollen shut, could not breathe. I blew my nose, pure blood, and I was coughing up blood again. So stupid I’ve never looked it up before, but the master bedroom is cedar from ceiling to floor. Apparently 1/5 of people are sensitive/ allergic to cedar lumber. I just always thought tree allergies come in the form of pollen, but it makes sense since other animals don’t want to get near cedar. All these years, it’s the cedar that has been causing my misery when we go to the farm. I forced myself to go to Thanksgiving lunch after 2 doses of Claritin & one of Allegra. I went home that night, miserable and exhausted.
Friday, I knew it was to the point of going extreme. I was so sick with the cough that I went to the CVS Minute Clinic and essentially down-played my TSW battle (not that she’d have cared) and presented my symptoms. She of course recommended a steroid taper that I did not refuse due to the fact that I didn’t want to end up hospitalized and am tired of feeling like my chest and head were going to explode. I was experiencing extreme pain in my lungs and have continued to have coughing spells that last for 15+ minutes where I cannot get air. I don’t want to go on and on trying to justify what I’ve done, but I truly feel I could continue listing symptoms that would make anyone agree I did the right thing.
I didn’t just feel sick. I felt like I was going to fall over dead.
I am going to document this as well as possible, because I’ve seen a lot of discussion, questions about this on various forums and support groups. They recommended a prednisone taper starting with 60mg.
(I started writing this on 11/29 but will continue to update throughout taper)
day 1, Friday- took 20mg as it was late afternoon, slept pretty well but did not notice much difference. Also started 10 days of Omnicef Fri PM.
day 2, Saturday- took 50mg before lunchtime, started to see inflammation on face, neck settling and swelling going down. I continued to cough my head off this day.
day 3, Sunday- tried to rest despite second day of 50mg but felt a bit testy, very discontent. My neck and hands looking much less inflamed and hands peeling drastically. Lungs starting to feel better but still major coughing spells.