Wednesday, July 9, 2014

Another infection, hospitalization.

Would you believe that for the week or so that I haven't been updating my blog, nothing out of the ordinary happened?

I wouldn't either.

I wanted to write a post the evening after I did the allergy testing for the antibiotics. I was so tired, though. The few days after that were also very hectic. All the kids were home every day, and it makes for some really non-stop days. Three of my kids went off to sleep-away camp this morning, and there was a lot to do to get ready for that.

So the results of the allergy testing gave us one antibiotic that we can safely say can be used if I needed it. Well, two- in the same family of antibiotics, but slightly different. The doctor set up another time for me to return to test some others. I left there thinking "OK, I got this now. Should I just reschedule the right hip surgery? Or wait until the MRI for the left hip and see which is a priority? So, I put those thoughts in a holding pattern. Made a mental note to call and get an MRI date ASAP.

Going off on a little tangent here- you'll see where I'm going with this soon....

When I got NF, we, of course, learned whatever there was to be learned about the disease. One of the interesting things we learned, which fit into the puzzle of when I got it, was that from the time a bacteria gets into your system to the time it morphs into NF is 4-5 days. I had the surgery on a Wednesday, and by Sunday night we knew that something was wrong. I think the horrific ambulance ride to the hospital was that Sunday night. It took another three days before I'd get antibiotics, though. By that time, the strep bacteria had settled in for the long run. By that Friday I was on life support.

OK, fast-forward the picture to last week.
Allergy testing on Wednesday. That entailed shooting a small, diluted form of the antibiotic into the upper layer of my skin on the underside of my wrist. They use a syringe, and put the fluid like a bubble under the superficial layers of skin. Then you wait 15 mins or so, and if the patch of skin with the bubble of liquid under it didn't turn red, they give you a more concentrated form of the medicine, also injecting it superficially under the skin.

As the needles were going in under the skin, I, of course, had a few thoughts that it could be bringing in other bacteria with it, as well. They dab the skin area with alcohol pads before sticking in the needle, but alcohol is useless with strep and staph. It doesn't kill it. Not on surfaces, not on skin. So here I was looking at these needles being stuck into me (deeper than an acupuncture needle, and at a deeper angle, if you want a reference), thinking "hmmmm.... let's pray there is no strep or staph hanging around on my skin from being in the hospital for a hour beforehand waiting for my appointment... or on the needle...."

I often have these thoughts. I am an NF survivor. Every single time I get a cut of any sort, I wonder if it will turn into a bad infection. *Every time*. It haunts me. If the cut gets red over the next days after it happens, my mind can really have a circus about getting NF again. It is an internal circus, I don't even talk about it anymore. But it happens each and every time I get cut, or scraped, or have a shot.

Well, up above when I explained about the 4-5 day incubation period for NF to take hold?
It could explain why I came down with a nasty form of cellulitis on Sunday, four days after the allergy testing. Yup.

I just spent three days being very sick, two and a half of them in the hospital. Came home today. 

I had a fever that made me feel like I was going to pass out at any moment, and pain near the Gapey site. Why not on my arm, where the needles were poked in? Well, my theory is that my lymph nodes can fight bacteria well, until bacteria finds it's way to my Gapey area. Not much to be said for lymph nodes around there. They all got removed with the NF. My lymphatic system in the left groin and thigh is shot, basically. Each time I've gotten cellulitis, it's been there. Often without seeing a definite point of entry. I really think that bacteria get in however they do (in this case, likely from the allergy testing injections), and settle in the groin/thigh area because there is no defence system there to fight it.

Sunday I had a horrible feeling fever (and was camp shopping with the kids- they still needed stuff, and I pushed myself to do it. Robert was at work, and it needed to get done.) I didn't listen to my body and just rest. I *knew* something was up when there was one specific area bothering me, hurting me more and more throughout the day. Fever climbed, and I called Robert. He convinced me to look at the area (hard to see) with a mirror, and call him back. I did, and was literally shocked by what I saw. Purple, red, swollen, spreading red down my thigh. Red flag for cellulitis. I've had it enough times before to know exactly what I was looking at.

It was four days after the allergy testing.

Well, Robert again convinced me to go to the ER, even though he wouldn't be home for over an hour later. I didn't want to/couldn't go alone. Robert called my dear close friend Miriam, who came swooping in a few minutes later, helped me get some stuff together, and took me in. The kids were shocked that one minute I tell them I am really not feeling well (I prepared a cooked dinner, anyway! With a 102 fever!), the next I am going to the ER. It is a scene they have seen before, quite a few times, unfortunately. It's sad. Dov put his arm around my shoulder, Shifra held my hand while we walked out to Miriam's car to go to the hospital.

Upon reaching triage, I told the nurse a very condensed version of my story, and alarmed them enough to get me a bed and a doctor pretty quickly in the ER. Within 2 hours, I got antibiotics-- the one I knew was on the "OK" list from the testing beforehand. Ironic, right? Let that sink in...... (if there was no testing, I may not have gotten the cellulitis, but since there was testing, and I got sick, we now had an antibiotic to give a maiden voyage...)

After way too many hours in the ER, knowing I was getting hospitalized, Robert got fed up waiting for an orderly to take me up to the ward, so he rolled my bed and took me there himself. My hero.

Finally bundled into a bed, fevery and in pain, but at least all the fluorescent lights were blessedly off. The ER is awful for anyone suffering and needing to rest. Those fluorescent lights are like interrogation lights shown directly into the eyes and face. I learned to pull my hat over my eyes. It helps. I cant turn myself onto either side usually, especially in uncomfortable beds, because of my hip pain. Being on my back, with a raging fever, those lights overhead, makes me very irritable and desperate for darkness. When I finally got into a regular bed in the surgical ward, I was out... like a light.

To be continued. I have to sleep now. I'll just leave the next installation starting with what happened in the morning. I was told I will not stay in the bed I have been comfortable in- both emotionally and physically. Why? What's this about being emotionally comfortable in a hospital bed? That's for next time. 

I have a lot of writing to do these next few weeks... a lot. Book stuff, and another time-related project, not book related, but the deadline is drawing close and because I got sick I haven't done it at all.

Having said that, I will try my best to keep up with the blog and chronicle this most recent infection, stemming from having had NF.

May we all have a quiet night... it's not been so quiet here, as you may have been reading or seeing in the news. We have rockets red blare (Arab-style), the bombs bursting in air (Israeli-style) on a too-regular basis these days. It's happening again. Be'er Sheva and all the outskirts is being bombed by our cousins over there in Gaza. I had two air-raid sirens while in hospital, and one long one just about an hour before I started to write this. I'm not scared. I've been through worse. My faith keeps me completely not scared. I just want it to stop.

Just like WW1 was started by the killing of Archduke Ferdinand and his wife, a hundred years ago, here the situation is different but similar. Three Jewish boys were kidnapped and murdered by Arab terrorists. Then one Arab boy was mercilessly murdered by Jews. I am not getting political about "us" and "them". I am merely saying that these atrocious deeds have started off this "escalation of hostilities" (I do not like that term), and how far it will escalate and where it will end is one big question mark.

Let's pray for quiet in Israel, for the children who *are* scared, even when their parents are not. 
This parent, however, is weary from the cellulitis infection and hospitalization, and glad to be home. Let's also pray that switching my antibiotic from IV to oral upon hospital release is enough coverage to keep the infection going away. That, actually, does scare me more than getting rockets and air raids. Infections. That is what scares me. Please, antibiotics, keep with the program. Keep up a good, strong, protective transition from going directly into my blood stream with the IV to going through the digestive system, with pills now. C'mon body. We got this.


  1. Just read the blog. You've been through so much again and again. Keep strong. Refuah shleimah.

  2. So glad you're back home, Sarah!

  3. Oh my. I was thinking about you the past couple of days. Refuah shelma.

  4. sending you good thoughts and a prayer for refua.

  5. Love the way you candy-coat your hospital experiences! We know you love being there. It's like a hotel. We want the pics with the fluffy robes and towels! Where are you hiding them? Love u!

    1. Miriam- I think that they keep a person in the awful conditions in the ER for an exceptionally long time so that when you finaly do get your bed in the ward, you *appreciate* it so much, it does seem like pampering in comparison!
      Thanks again for being my swooper. I love you.