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
Hi I never really go on these kind of blogs or sights so I'm not even sure if I'm ok to post so I'm sorry if I'm not doing this right . I just accidentally came across you blog here while trying to find answers for my 15 year old daughter . My husband has diagnosed with lupus about 16 years ago . He was the top subject of the week in a learning hospital where he went through many test and even lymph nodes removal and Bone marrow biopsy then kidney biopsy so on .. We had no idea what it was or what was going on I told my nana ( grandma) about it to find that she as well has lupus so now I know it's coming from both sides of the family . Right now years later my 15 year old daughter has been going through anxiety attacks and depression and horrible fear of loosing her vision so she finally told me when I could tell something was wrong and she said she was seeing burst of white flower shaped lights and when things or people pass slowly by she would see white shadows trailing behind . She dose wear glasses and has a strong prescription . So we took her into an eye doctor and nothing then a CT scan it came out fine but I decited since there was lupus on both sides to check her for it so the first test I guess was a basic ANA test and I was not really expecting it to really come positive but it did so they then tested further wich where as fallowed SCL-70 antibody negative SM/RNP antibody 2.0 positive sjogren's antibody (SS-A) 1.3 positive but then sjogren's antibody (SS-B) negative and centromere B antibody negative .... Now right now I don't really know what all that means these are just test done by a regular family doctor that could not tell me much other than her lupus test showed negative but she was positive for sjogren's and mix connective tissue diseas ? She can not tell me about them and that I need to have her see a pediatric rheumatologist witch I figured . I have to await a month for that appointment so I guess I'm just reaching out for any knowledge of the test results and this sjogren's it just doesn't seem to match up right she dose not have those symptoms :(
Hi there. I'm glad you wrote. that wait to see the rheumatologist is so annoying. We have all been through it, suffering, anxious, confused... and waiting. I wish it weren't that way.
there are a few forums where a lot of people chat that you might want to participate in. try looking at butyoudontlooksick.com and wehavelupus.com
You'll find lots of interesting people and topics there. Sjogren's is another autoimmune disease. It's not uncommon for people to have more than one autoimmune disease. Doctors for some reason these days are more likely to call something "mixed connective tissue disease" than "lupus" and I don't know why.
for some very good info on lupus symptoms and diagnosis, look at lupus.org
As far as the strange things with your daighter's eyes, it may just be migraines. Right before I get a migraine headache, i see all kinds of auras and zig zag patterns in my eyes and can't read or watch tv or look at the computer- basically can't really use my eyes til it passes. It always passes.
As far as the diagnosis, trust your instincts. You know when something just isn't right.
You may also be able to find a local lupus support group to attend while you're waiting for that appointment at lupus.org.
Also consider there is a whole other line of thinking, beyond medications, for getting your health back once you're develope an autoimmune disease. Please check out this fantastic blog by a doctor who treats with diet and supplements: http://drhyman.com/blog/conditions-category/autoimmune-disorders/
Prednisone is so not my friend. I do know I needed it a few times with my lupus but it has caused some major changes in my body and weight. I am trying so hard to get back to a place where I can help myself. Just started a blog for my own personal therapy but if you would like to stop by I would love. Thanks for sharing. http://lupustales.blogspot.com/
Thank you so much Carla for your response I'm defenatly going to look into these and I do believe in trying all healthy things before resulting in medicating leaving it the last thing I would have to turn to I hate prednisone it's just horrible ... Thank you again ill be checking in I don't go on the Internet to much thank you Destiny
4 comments:
Hi
I never really go on these kind of blogs or sights so I'm not even sure if I'm ok to post so I'm sorry if I'm not doing this right . I just accidentally came across you blog here while trying to find answers for my 15 year old daughter . My husband has diagnosed with lupus about 16 years ago . He was the top subject of the week in a learning hospital where he went through many test and even lymph nodes removal and Bone marrow biopsy then kidney biopsy so on .. We had no idea what it was or what was going on I told my nana ( grandma) about it to find that she as well has lupus so now I know it's coming from both sides of the family . Right now years later my 15 year old daughter has been going through anxiety attacks and depression and horrible fear of loosing her vision so she finally told me when I could tell something was wrong and she said she was seeing burst of white flower shaped lights and when things or people pass slowly by she would see white shadows trailing behind . She dose wear glasses and has a strong prescription . So we took her into an eye doctor and nothing then a CT scan it came out fine but I decited since there was lupus on both sides to check her for it so the first test I guess was a basic ANA test and I was not really expecting it to really come positive but it did so they then tested further wich where as fallowed SCL-70 antibody negative SM/RNP antibody 2.0 positive sjogren's antibody (SS-A) 1.3 positive but then sjogren's antibody (SS-B) negative and centromere B antibody negative .... Now right now I don't really know what all that means these are just test done by a regular family doctor that could not tell me much other than her lupus test showed negative but she was positive for sjogren's and mix connective tissue diseas ? She can not tell me about them and that I need to have her see a pediatric rheumatologist witch I figured . I have to await a month for that appointment so I guess I'm just reaching out for any knowledge of the test results and this sjogren's it just doesn't seem to match up right she dose not have those symptoms :(
Hi there. I'm glad you wrote.
that wait to see the rheumatologist is so annoying. We have all been through it, suffering, anxious, confused... and waiting. I wish it weren't that way.
there are a few forums where a lot of people chat that you might want to participate in. try looking at butyoudontlooksick.com and wehavelupus.com
You'll find lots of interesting people and topics there.
Sjogren's is another autoimmune disease. It's not uncommon for people to have more than one autoimmune disease. Doctors for some reason these days are more likely to call something "mixed connective tissue disease" than "lupus" and I don't know why.
for some very good info on lupus symptoms and diagnosis, look at lupus.org
As far as the strange things with your daighter's eyes, it may just be migraines. Right before I get a migraine headache, i see all kinds of auras and zig zag patterns in my eyes and can't read or watch tv or look at the computer- basically can't really use my eyes til it passes. It always passes.
As far as the diagnosis, trust your instincts. You know when something just isn't right.
You may also be able to find a local lupus support group to attend while you're waiting for that appointment at lupus.org.
Also consider there is a whole other line of thinking, beyond medications, for getting your health back once you're develope an autoimmune disease. Please check out this fantastic blog by a doctor who treats with diet and supplements: http://drhyman.com/blog/conditions-category/autoimmune-disorders/
My warmest wishes to all of you.
Carla
Prednisone is so not my friend. I do know I needed it a few times with my lupus but it has caused some major changes in my body and weight. I am trying so hard to get back to a place where I can help myself. Just started a blog for my own personal therapy but if you would like to stop by I would love. Thanks for sharing.
http://lupustales.blogspot.com/
Thank you so much Carla for your response I'm defenatly going to look into these and I do believe in trying all healthy things before resulting in medicating leaving it the last thing I would have to turn to I hate prednisone it's just horrible ... Thank you again ill be checking in I don't go on the Internet to much thank you Destiny
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