Thursday, September 25, 2008

A rash of bad luck

To top things off...

(and yes, I made it through the Jerusalem trip today & the concert. Thank Gd it's over)

A few days ago I went to my family doctor. I have had a few health related issues that I have ignored for 3 months or so because they aren't NF related, so they went on a back burner. One was a clogged ear I've had since I swam in the ocean in July, and the other is a stubborn rash on my arms that is also about 3 months old, also from the Jersey shore where my arms got a bit sunburned.

So the ear thing will have to wait until beginning October when I can get in to see the ENT specialist. It's an inner ear thing that needs draining or something.

The rash is really annoying, and I kept hoping it would go away by itself all this time. It itches all the time. So my doctor looks at it and starts thinking it may be an allergy to one of the medicines I'm on. It appeared right after my sunburn this summer, in the same place on both arms. I've been treating it with cortisone cream. It takes away the itching temporarily, but the rash doesn't go away.

After researching 'photo-sensitive reactions' for the medicines I take (4 meds every day), he comes to the conclusion that it must be my antibiotic. So, he told me to call the infectious disease doctor who prescribed it.

I spoke to him today (ID doctor in Icholov). He confirmed it, and told me to go off the antibiotic. It went like this:

me: "so after the rash goes away, and I will cover up in the sun, will I go back on the Rulid [antibiotic]?"

him: "no, once you've had a reaction, you can't go back on it or the next reaction could be worse"

me: "so is there another one that you'll suggest?"

him: "no, there isn't anything else appropriate in your case, you have allergies to Penicillin & Clyndamycin".

me: (obvious question) "so what should I do after I go off the Rulid?"

him: "there isn't anything else for you. Some people just can't be on antibiotics for long-term".

me: "so I won't have that coverage any more? I could get strep again and get very sick?"

him: "well, theoretically, yes. Call me after being off Rulid for a week, and we'll see if that rash goes away."

me: "and then...?"

him: "then we'll take it from there. But once your body has a reaction, weather caused by photosensitivity or not, it won't be able to take that antibiotic any more, even without sun exposure. [then he went on to say] ...and even if you were covered up like a Beduin woman, the reaction [to Rulid] would be there the next time around, and quite possibly more severe. I don't want the situation that you to have allergies to more's not a safe situation.

me: "ummm.... [long pause, stumped for more questions, slightly stunned] OK, I'll call you next week."

him: "OK, talk to you then. Take care."

So, that's about it, I guess, for long-term antibiotics. It has been calming emotionally for the times when I think I may be getting cellulitis again, to remember that I am on antibiotics, and the soreness will pass like it always does. Take away that comfort zone (if you can call it that) and I have to deal with paranoia about illness from a different angle. I'm worried. And a bit depressed about this. What about if/when my kids get strep? My husband is a school teacher, what if he brings it home?

I've only been on the antibiotics since late June, but it has changed my 'inner dialogue' about getting sick again. Now that carpet is gone?

On another note, my skin graft (aka: Gapey) has a small abrasion on it which is harboring a small infection (size of a pimple). The abrasion is probably from the pressure garment. I put antibiotic ointment on it, but it still has a yellowish middle. Gotta go check that out. It doesn't hurt at all, but I have no nerve endings in Gapey, so I can't rely on that measuring stick.

I am very sick of going to doctors. I had finally gone to take care of these annoying "little" things that have been lingering on with abandonment, and it is turning into bigger things. That's why I ignored it for so long in the first place. I just want it to *go away*.

I want it all to *go away* and let me live. But scratching my arms forever isn't an option. And it is very irritated, not good for skin; it could also get infected.

Infection. It is the fear word in my life. Gotta check this out, check that out. Once you start, it seems impossible to get balanced again. "Every drug has a price", that's what I say in my birth preparation course. There is a time and a place for them, but there will always be a price.

I am depleted from paying the price.


  1. Sarah, I just caught up on your updates. Sounds like you are having such a hard time. I can relate to the depression and wanting to give up; it's not fun. I can't even imagine what it would be like to be depressed from what you've gone through. It's so hard to feel like you're not being the parent you want to be. It's hard to know you're not living the life you want to lead. It's hard not knowing what the best choices are or how to stop those voices criticizing your choices in your mind. All I can say is to try to remember some blessings each day. Try to find a way to get yourself some peace for a little while each day. Yoga helps me sometimes, not sure if that's an option for you. I hope you can find some way to bring yourself some peace.

  2. I wonder if you aware of how much I admire you? Not only are you doing SO much but you are constantly aware of what is too much, what is harming you and what gives you strength.

    kol hakavod and yashar Kochech!

    May this be a Shana Tova B'Emet in every way!