ROID MOM!!!
Good morning everyone! So today I have an emergency dental appointment because one of my teeth may be infected and the my gums are all kinds of bleeding and painful when I floss. Umm, yes, I am still on prednisone so the whole prednisone/antibiotics discussion will be fun. Today was going to be my first 5 milligram day of the taper so, we’ll see. Either way, this tooth HURTS!!! And it won’t let me sleep since it’s been my hourly wake up call these last two nights.
Two things today. Prednisone and what it looks like to have a super suppressed immune system….
I’ve been on prednisone many times and for long periods of time. Last year, after being on low doses of prednisone for a couple months with not a lot of change in disease activity, I asked my fuddy duddy Rheumatologist if we could try a high dose of prednisone for a short amount of time in an attempt to knock out the flare. You know, if this isn’t working, try something different…. He told me that prednisone makes many people feel good, gives them energy and this causes people to get addicted to it.
Ummm, seriously!?! I looked at my husband with that, are you f*&king kidding me look, and he looked at me like, HAHAHAHA, No. I looked back at the doctor feeling completely closed off because the second you use the term, addiction, I shut down. Once you’ve had to take narcotics because of chronic pain, people just assume and you end up with that stigma, whether you deserve it or not. I didn’t, but I have been punished via people’s ignorant assumptions.
But anyway, I’d just like to call bullshit on the whole prednisone feel good energy thing. Whilst on prednisone, I have little energy or motivation for anything that involves movement. Further, I don’t get that super fuzzy happy feeling, I’m a hateful bitch. I can’t help it. It just happens. I bloat, swell, have difficulty sleeping well, and, without marijuana, the great hate monster equalizer, I’m a raging angry ROID mom monster with conniption fits that would make Connor McGregor turn around and say, “Nope”. If I ever had an issue with being “addicted” to prednisone, I have the best intervention possible at home. It’s called, my husband would hide it from me in an attempt to maintain life within the household. But, would I argue with the doctor about this? No. He made up his mind before the words left his mouth so it would have been a useless attempt at actual real logic. By the way, I’ve gone from a size 5 to a size 10 since last August. Slim Fast would be so proud. Ah the joys of living with a chronic disease.
The second thing I’d like to talk about is what it’s like to have a suppressed immune system. See, prednisone is used to treat Lupus flares or “acute symptoms”. Another form of Lupus therapy, apart from Plaquenil, is DMARDS, which are immunosuppressant’s. I was on one called Arava. It wasn’t half bad. I had no negative side effects and it did it’s job. It helped to reduce my immune system. Well, my immune system either leveled out or whatever, but I went from having an overactive immune system to having almost no immune system.
I ended up with strep, among other bacterial infections in my tonsils, that, despite three months of antibiotics, wouldn’t go away, so, my tonsils were removed. I found out so much about being immuno-supressed that no one ever told me would happen. I developed fungus under my toe nails and my big toe nail fell off. Yeah, couldn’t blame that one on the nail salon. You get warts. Yes, warts on my arms. I know, I know, it doesn’t get much sexier than that. Then, my favorite part of lacking an immune system is that smell. That 6th grade boy’s locker room smell. You know, before they start wearing deodorant regularly even though they NEED to. That gag inducing stink that only emanates from your average sweaty, gross tweenage boy. Yep, that was me.
Immuno-supressed means no deodorant, I don’t care if they say “clinical”, can suppress that bacteria based B.O. that rears its ugly head the second you get out of the shower. The only respite from the stench is those few seconds in the shower when you’re trying to scrub it off with sulfuric acid and a Brillo pad. Apart from that, it’s a constant battle to mask the stink using a variety of products such as, super scented deodorant, lotion, perfume, hair spray, Febreeze….. Whatever. Thankfully, I have two teenage boys to blame it on, but not everyone has that available to them. I mean, if you can seek out a teenage boy in public to stand next to and give that, “who farted” look, it could be a viable option. So, lacking an immune system is a dirty business that I would not wish on anyone.
I have my immune system back and I refuse to take DMARDs like Arava again at this point. I know it has a purpose, but not for me at this point. Gotta go. Hope everyone has a great day!!!
Two things today. Prednisone and what it looks like to have a super suppressed immune system….
I’ve been on prednisone many times and for long periods of time. Last year, after being on low doses of prednisone for a couple months with not a lot of change in disease activity, I asked my fuddy duddy Rheumatologist if we could try a high dose of prednisone for a short amount of time in an attempt to knock out the flare. You know, if this isn’t working, try something different…. He told me that prednisone makes many people feel good, gives them energy and this causes people to get addicted to it.
Ummm, seriously!?! I looked at my husband with that, are you f*&king kidding me look, and he looked at me like, HAHAHAHA, No. I looked back at the doctor feeling completely closed off because the second you use the term, addiction, I shut down. Once you’ve had to take narcotics because of chronic pain, people just assume and you end up with that stigma, whether you deserve it or not. I didn’t, but I have been punished via people’s ignorant assumptions.
But anyway, I’d just like to call bullshit on the whole prednisone feel good energy thing. Whilst on prednisone, I have little energy or motivation for anything that involves movement. Further, I don’t get that super fuzzy happy feeling, I’m a hateful bitch. I can’t help it. It just happens. I bloat, swell, have difficulty sleeping well, and, without marijuana, the great hate monster equalizer, I’m a raging angry ROID mom monster with conniption fits that would make Connor McGregor turn around and say, “Nope”. If I ever had an issue with being “addicted” to prednisone, I have the best intervention possible at home. It’s called, my husband would hide it from me in an attempt to maintain life within the household. But, would I argue with the doctor about this? No. He made up his mind before the words left his mouth so it would have been a useless attempt at actual real logic. By the way, I’ve gone from a size 5 to a size 10 since last August. Slim Fast would be so proud. Ah the joys of living with a chronic disease.
The second thing I’d like to talk about is what it’s like to have a suppressed immune system. See, prednisone is used to treat Lupus flares or “acute symptoms”. Another form of Lupus therapy, apart from Plaquenil, is DMARDS, which are immunosuppressant’s. I was on one called Arava. It wasn’t half bad. I had no negative side effects and it did it’s job. It helped to reduce my immune system. Well, my immune system either leveled out or whatever, but I went from having an overactive immune system to having almost no immune system.
I ended up with strep, among other bacterial infections in my tonsils, that, despite three months of antibiotics, wouldn’t go away, so, my tonsils were removed. I found out so much about being immuno-supressed that no one ever told me would happen. I developed fungus under my toe nails and my big toe nail fell off. Yeah, couldn’t blame that one on the nail salon. You get warts. Yes, warts on my arms. I know, I know, it doesn’t get much sexier than that. Then, my favorite part of lacking an immune system is that smell. That 6th grade boy’s locker room smell. You know, before they start wearing deodorant regularly even though they NEED to. That gag inducing stink that only emanates from your average sweaty, gross tweenage boy. Yep, that was me.
Immuno-supressed means no deodorant, I don’t care if they say “clinical”, can suppress that bacteria based B.O. that rears its ugly head the second you get out of the shower. The only respite from the stench is those few seconds in the shower when you’re trying to scrub it off with sulfuric acid and a Brillo pad. Apart from that, it’s a constant battle to mask the stink using a variety of products such as, super scented deodorant, lotion, perfume, hair spray, Febreeze….. Whatever. Thankfully, I have two teenage boys to blame it on, but not everyone has that available to them. I mean, if you can seek out a teenage boy in public to stand next to and give that, “who farted” look, it could be a viable option. So, lacking an immune system is a dirty business that I would not wish on anyone.
I have my immune system back and I refuse to take DMARDs like Arava again at this point. I know it has a purpose, but not for me at this point. Gotta go. Hope everyone has a great day!!!
Comments
Post a Comment