Hello my wonderful readers,
First of all, I cracked up when I saw there was an actual comic book character named "Tiger Girl" since that's what I've been calling myself for the past 3 weeks! I am, of course, referring to the sexy, pesky and painful tiger-stripe rash all over my body that I first wrote about here. The rash is a severe allergic reaction to the IV Remicade that I received on September 11, but who woulda thought I'd still be popping Benadryl like it's candy?
The reaction also started giving me nosebleeds, severe fatigue, and weird bruising, so my rheumatologist referred me to Dr. Bernard Feigenbaum - an allergist in New York City. I've never had to see an allergist before, but to be honest, I was kind of digging the whole profession. The doctor and his nurse sat down with me and took down a detailed narrative of my past month. It kind of felt like being transported into a mystery novel: "Where were you on the night of September the 14th?" "Who were you with....when did these mysterious stripes first appear?" I'm sure it was slightly less exciting than all of that, but hey - a girl's gotta cope!
In all seriousness, though, I'd recommend that doc to anyone and it's no surprise the referral came from Dr. Jessica Berman, my rock star rheumatologist. Ever since I met her, the quality of my medical care has skyrocketed and I feel a genuine sense of security amidst this recent chaos. That says a lot. After the appointment with Dr. Feigenbaum (brace yourself), he called a few days later "just to check up." We confirmed that the outbreaks were, in fact, from the Remicade and that unfortunately I can't even conceive of introducing a new medication into my system until this junk is out of my system. It could take a few more days or it could take months, so that's the rough part. My awesome insurance company also wont approve another medication until the end of October, so I guess I was in no rush anyway. Sigh...the red tape & daily realities of a sick chick.
In the meantime, Dr. Berman is in touch an impressive amount, reassuring me that we'll get this under control. I'm also still on prednisone - a steroid that helps my pain tremendously, but also gives me the following SWEET side effects:
1) A face that resembles that of a chipmunk more and more every day :(
2) Inordinate amounts of sweating (thanks for putting up with me John)
3) A general sense that I'm about to jump out of my own skin...no big deal
4) Insomnia (at least I'm all caught up on my TV shows)
5) Foolish amounts of gas (again, thanks for loving me anyway John)
6) Constant thirst ( I think my apartment building is experiencing a water shortage because of me)
7) An appetite that can only be described as akin to Garfield
7) An appetite that can only be described as akin to Garfield
To be honest, the tone of this post sort of mirrors a general shift in my outlook lately - a kind of "going with the flow because what the heck else can I do?" feeling. I've got to laugh about all of this or I'll lose it. It's actually been pretty fascinating to see the coping mechanisms that our minds are capable of utilizing when our bodies couldn't be more unpredictable. I'll write more about that later, but for now - thanks for reading!
Love,
Maya
Posts
hopefully the tiger stripes end before you turn the age when we would have to call you a cougar! i can't believe it has been 3 weeks; you really have handled this like a champ. and don't worry about the side effects of prednisone, as soon as it is out of your system you are back to new. i dropped 30 lbs since stopping it over just a few months! and if the jumping out of the skin gets bad, you could always add some anti-anxiety meds to your personal pharmacy! hang in there...you are not alone...xoxo...
ReplyDeleteThanks so much Betsy, you always know the right thing to say - it's a gift :) It will make you a kick ass social worker! Thanks for the encouragement about prednisone too....it's definitely a cost-benefit kind of thing, but I just have to remember how I felt this August and the decision is easy (chipmunk cheeks and all). Sending you lots of love xoxo
ReplyDeleteOuch, this doesn't sound like much fun at all. I'm glad you seem to be taking it so well.
ReplyDeleteSo what next? Is the doctor going to be taking you off of the Remicade?
One more question for you. Have you tried Humira.? I'm sure you've probably written something about what you have taken, but this is just a quick question to you.
Hi Vic! Thanks very much for caring to know more about this tiger saga. I'm taking it so well because that's really the only choice my mind has given me at this point. I don't deserve to be sad or anxious every day, so I'm grateful for this newfound attitude amidst the uncertainty. I'm currently waiting on my insurance company to approve Orencia and my doctor's office is fighting for me. I could use all the good vibes out there :) I was on Humira for 5 years and, it was only until the summer when my body stopped responding to it, that I realized just how effective it was! It let me live a really normal life and I'm grateful for it. Please feel free to e-mail if you want to talk about it anymore.... I am sending you pain free wishes xo
ReplyDeleteWow, I have never heard of a tiger stripe rash before ... that seems very unusual. But I love how you found Tiger Girl and have adopted some super powers of coping to get you through this rough patch. Hope this all ends very soon.
ReplyDeleteSelena: Thanks so much for your comment, your support and for following my blog! That was a nice surprise to wake up to this morning :) Please be in touch - I'd love to get to know you
ReplyDeleteSo, do you still have the rash and the super powers of Tiger Girl? Allergic reactions are no fun, so I enjoyed your great attitude about the whole thing!
ReplyDeleteGood luck with your insurance company! Sounds like you have hooked up with some awesome doctors -- that makes such a big difference. My pcp is fantasic about listening to what I have to say, and working with me to figure out a medication regime.
And, tears of laughter are better than tears of pain.
Phylor: Actually my stripes seem to be a thing of the past (thaaaaank goodness). Thanks for asking and for your comment. It's always nice to hear that somebody out there understands and I agree about those tears of laughter. I'm wishing you many of those...
ReplyDeleteSometimes laughter is the best medicine for the side effects of actual medicines!
ReplyDeleteKathy: I couldn't agree more :) I'm seeing that more than ever!
ReplyDeleteGreat post! Being able to get comic relief can and does translate into real one by enhancing body's innate healing capacity esp in case of disorders that still continue to mystify the modern science to a great degree.
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