"What Would You Do?"

A reader writes in and asks what I would do in her circumstance.

Hello Carla-

I am 34 year old mother of 3. I've been hypothyroid since I was 18.  I came down with an unknown virus in December that gave me severe leg muscle aches, 102 fever, and chills, followed by an itchy rash. I was given a steroid.  

I still had symptoms coughing up mucus. A "minute-clinic" doctor put me on an antibiotic. I started feeling better but at some point noticed my fingers felt like I had hurt them playing a sport.  I have  stiff feet in the morning and when I wake my feet, knees, and hands are rebelling. I saw my doctor Feb. 2 and she wasn't concerned but ran an arthritis panel, nothing came back abnormal except ANA. 

She said she saw no reason to send me to a rheumatologist if ibuprofen is working because she didn't see anything going on.  In other words, no other symptoms of any autoimmune diseases.  My family and I are now trying to cut out gluten.  I did develop psoriasis after the birth of my second child. 

We are working on my thyroid levels, and waiting to see on the ANA.What would you do?

Hello!
Thanks for writing. I will attempt to be as helpful as I can.
I am not a doctor but I have 20 years' experience living with 4 autoimmune conditions and I have tried everything under the sun- mainstream and alternative, and some of it has helped tremendously.

Looking at the bigger picture, I do see autoimmune, as psoriasis is an autoimmune disease. And some forms of hypothyroid are also autoimmune. (Do you have Hashimoto's?) It is not uncommon, once you have one autoimmune disease for others to appear at some point.

You ask what I would do.
I would do anything for my health, and I have. I've got acupuncture, chelation therapy, had my fillings replaced, chiropractic, massage, lymphatic massage, energy medicine, psychotherapy, prescriptions, physical therapy- the list is long.. But in the end, the long-term things that helped the most (and cost nothing, except for the blood test) were doing chi gung and changing my diet: I cut out gluten and dairy (and nutrasweet, eggs and bananas) after having food allergy tests done. These were not pin-prick tests, which check for immediate reactions, but a blood panel that checks for delayed reactions. If I accidentally eat dairy (party/ restaurant) I know because my tendons flare up. If I accidentally get some gluten, I know because my joints swell and hurt. And if i want a migraine, give me MSG or nutrasweet. Just one life saver with nutrasweet, that'll do it.

I don't know where you live, but try calling/ e mailing Dr. Mark Hyman's office and see if you can get an appointment or a referral to a functional medicine doctor. That kind of doctor will look for and remove underlying causes of symptoms, rather than just relieving symptoms with drugs. Sometimes it's allergies, sometimes vitamin deficiencies. If you can't find a functional medicine doctor, try an osteopath. Ask around for a recommendation. Also try ACAM, http://www.acamnet.org/

Call a yoga studio or health food store if you have to and look for some leads on effective knowledgeable healers. Decide if you want someone to get to the bottom of this. Once you get clear on that, then don't let up knocking on doors and asking questions until you're satisfied with the answers you get.

That is what I would- and did- do, and I got my health back.


I believe we were not meant to suffer. We simply live in an unhealthy environment and we have to learn to protect ourselves and be healthy despite some of the things around us that are working against that.

Well wishes-
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Benefits of Laughter

You all probably know I'm a huge fan of humor and laughter. Thought I'd share this infographic with you, courtesy of www.greatcleanjokes.com

By the way, if you're really into learning more about the benefits of laughter and hang around some of the people who are working in the field of laughter study, check out this great organization: www.aath.org or this one www.thehumorproject.org . Each organization has annual gatherings of wonderful folks from all walks of life, and I've attended and greatly enjoyed each.

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Prednisone vs. the killer rash Part 2

In the great battle of Prednisone vs. the killer systemic rash, the prednisone has WON! My rash has pretty much disappeared. As has my prednisone. I took the last one yesterday (it was a 6-day pack where you take 6 pills on day 1, then 5 on day 2, then 4 on day 3, etc.).

These last couple days I was getting headaches from prednisone withdrawal. I knew that was what it was because I've been through prednisone withdrawal several times now. Three times I've been on prednisone for 9-12 months to control lupus, which was attacking my kidneys, lungs, heart, you name it. And every time we cut the dose, I'd feel like crap for 3 days. If we cut it a lot, like from 40 to 30 mg in one swoop, I'd feel like I had the flu for a few days- achy, exhausted, sleeping 14 hours a day. So, it's good to just remember "Oh yes, it's just prednisone withdrawal. It's not me getting sick again, or getting something else. This will pass." And yeah I took an Advil yesterday for the headache. I'm not a martyr.

Yesterday I took my last prednisone pill of the 6-day pack and today I did something I *never* do- I took a nap. For an hour. I really didn't want to get up, with my sweet little furry friend curled up by my chest (the dog, not my husband), but we had a valentine's dinner to go to (with the hubby, not the dog), and anyway if you nap too long, you can't sleep at night. Boy those little furry friends can relax you right to sleep.
Here's our dog making sure my hubby gets a nap:

Before the withdrawal, I got to enjoy a couple days of prednisone mania. Some people use the mad amount of energy prednisone can give you to clean the house. I used mine to write 2 ridiculous songs, start 3-4 other songs, and finish and record one other song I've been working on. This is the fun part of prednisone.

The not-fun parts of prednisone, of course, are the withdrawal, and, if you stay on it long-term: hair loss, weight gain, mood swings, osteoporosis, cataracts, diabetes, insomnia (already have that, pass on having even more thanks!), and that lovely moon-shaped face. I can't believe I'm about to do this, but here are before and after pictures of me on and off prednisone.  I actually weigh *less* in the prednisone picture (the middle picture) than in either of the others. I'm about 95 pounds in the prednisone picture, but the drug puffs my face up so much I look like I weigh 500 pounds. I considered putting pictures like this in my book, but my publisher (probably wisely) decided against it.

Carla before prednisone:

during prednisone (obviously, no makeup):

after being off prednisone for a while (also no makeup):

After having my looks altered this drastically once, you can only imagine how desperate I'd have to be to ever go on prednisone again. But I did. Two more times. I resisted every time because of these effects. It always came down to the realization that I would die if I did not take this drug. So, I owe it my life. But I always do everything I can to not be on it long-term, and that's why I'm on a gluten-free dairy-free, no egg, no nutrasweet diet. Those are my food allergies and if I avoid them, my disease stays quiet. And I don't need prednisone. Unless of course something happens like this past week and I have a severe allergic reaction to something else. But that's short-term prednisone, and I can deal with that.

I've said this before, but I feel it bears repeating: if you are on prednisone, do NOT EVER suddenly stop taking it. Prednisone replaces a hormone that controls your vital organs and there is a lag time between when you stop taking it and when your body starts making it again. This is why you MUST taper off the drug slowly, or you will go into crisis and end up very sick or dead. Or worse, on even higher doses of prednisone.

Well wishes to you-
Carla

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Prednisone vs. the killer drug reaction

Thanks to a severe allergic reaction to a medication, this is me for the next 6 days, on prednisone (plus i got a shot in the butt this time!) http://www.youtube.com/watch?v=gYlgtloOztU&feature=share&list=UURC9gl53K4UW7qQVP5bAPjw

Those of you who know me or have read my book or heard me sing this song know I am NOT fan of prednisone, but I do acknowledge that it has saved my life 3 times now. Maybe 4, if you count this week. Because,  holy canoli you guys, I got the WORST rash from taking this new medication for mood regulation (I have severe insomnia- was staying up til 7 or 8am tossing and turning). 

Here's some "disease porno" of the rash for you:

 

 

I think it was Shakespeare who said "the cure is worse than the malady." This hot red rash covered my whole body, and I've been so exhausted all week. 

Sunday/ Monday: Before the rash showed up, I thought i was getting the flu. Tired, confused, sore throat, feverish. Wandered around town for a half hour in 27-degree weather in a sketchy neighborhood at night after misplacing my car Monday night. I had gone to acting class even though I didn't feel up to it. I didn't want to miss it because it was the night we were getting paired up with our scene partners and getting our long-term project handed out. And again, those of you who know me, you know I won't skip something I've committed to just because I don't feel good. I did a gig after having a stroke, for God's sake. I took extra vitamin C and some Umcka, a homeopathic cure I always take when I feel like I'm coming down with something. Works great.

Tuesday: I noticed the rash on my leg. I was very tired, but I dragged my sorry butt to an event I had didn't want to miss- Ron Culberson, President of the National Speakers Association doing a great talk on humor. It was a 15-minute drive but I had to get a ride- didn't trust myself to drive. I felt like i was going to fall over in my plate of 2-star chicken marsala. I recorded the thing on my iphone so I could hear what I missed later. People kept asking if I was OK. I got home and went right to bed. I had to have my husband literally push me up the stairs. I mumbled questions into the pillow about "steven's johnsons syndrome" and he googled stuff on the ipod. We called the doctor and discontinued the rash-inducing drug. Insomnia was certainly not going to be an issue tonight anyway.

I wanted to go to sleep... "I'm so exhausted- if i go to sleep will i die?" I felt like i had zero life force. We debated going to the ER. I didn't even have the energy for that. And if I go to the ER will I have to wait all night just for a shot of prednisone, when i could just sleep now, wait til morning and go to urgent care for cheaper and get the same thing? Or am I being cheap? or irresponsible? We concluded from google that because I had no blisters, I did not have Steven's Johnsons syndrome. So I went to sleep. And I lived.  

Wednesday: I woke up the next morning (OK, well, 2pm) and against any sane person's better judgment, I drove to Westfield and taught guitar for 3 1/2 hours. I wore a baseball hat to work because I was too tired to wash my hair. The shop owner looked at me when I was done teaching and said "Are you OK?" I made it home OK but was exhausted and not interested in food. 

The rash was getting much worse.... head to toe. I've had this before from 2 or 3 different antibiotics and also from systemic poison ivy. Untreated, it is hell and lasts over a month with me, with itching burning and total exhaustion. I've long believed it was the month-long living in severe allergic reaction to an antibiotic, untreated, that went on for a month, that changed my health forever. I was never quite the same after that. With my autoimmune diseases (currently dormant), it's just asking for them to be triggered. Stresses and traumas are great triggers for things like lupus and fibromyalgia. So, although I generally prefer to treat things with natural means, there is a time and a place for medication and this was clearly once of those times and places.

What really tipped Joe off that I was being affected cognitively was me watching - and enjoying- 3 consecutive episodes of that Rick Savage TV show where he goes around with a metal detector looking for artifacts. Yeah I lost some IQ this week. Hopefully temporarily.

Thursday: Joe took me to Medemerge (great little urgent care place run by doctors in Green Brook, NJ). I held onto his arm going in. I had no balance or strength. I was at that "Do whatever you gotta do" point. "Want to see my whole body? Fine. Need 20 vials of blood? No problem. Shot in the butt? I'll drop my drawers." Y'know, I wish I could get my blood drawn from my butt. It hurts much less than the arm. Got Rx filled at  Pharmacy. Took a benadryl before bed.

Friday: still a zombie. Stayed in bed til 3pm. Didn't sleep that well. Didn't do much, didn't eat much. Took my 6 prednisone pills, though. Sometime in the evening I cracked a really funny sarcastic joke and Joe and I both said "she's back!"

Saturday: Slept great. I have energy today. Kinda racing thoughts, like a little prednisone mania, but I'll take it. I've had ZERO energy all week until now, even with caffeine- nothing. So even if it's fake, I'm enjoying it. Walked around the bloack with dog and hubby and took pictures of the snow, read the mail. answered some emails, practiced tap dancing for a half hour, worked on a little music, and i'm writing this blog. And so far (the evening is still young) I haven't watched Rick Savage wander around with a metal detector for 90 minutes.

This is day 2 of a 6-day pack of prednisone (day 3 if you count the butt booster shot). And I don't take back everything bad I said about prednisone, but I am grateful it exists.We can see each other on rare occasions, you and me, prednisone. I respect you. I appreciate you. We just can't move in together, OK?

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com - performance  info and dates

www.youtube.com/user/carlaulbrich - funny songs
www.twitter.com/singingpatient

www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book