Thursday, July 20, 2017

Infections and head-trips

I'm a mess.
I mean a real mess.
I don't know where to start.

I always force myself to under-react when I have "symptoms"... of anything. That is because I over-react so inordinately in my mind, because I've been through NF. You can't imagine what a mind trip that can do on a person. I mean, I know you guys know me, and read what I write, but I can't really say strongly enough how messed up your head can get after having had NF. I read about it on my NF Facebook page, also, so I know it's not just me. It's crazy. Every little pain, or cut or scrape-- is this the one that is going to send my body overboard again? Are there any demonic bacteria in there?

I really think that anyone who has not gone through it cannot relate. I know you want to, but I'm telling you, it is so awful to be prisoner to this thinking.

Having said that. now I'll tell you where it's coming from.
I've had a little skin opening on my skin graft for a few weeks now. It's happened in that place before, and it's also the same place I got cellulitis before. It's a part of the graft that didn't "take" after the skin graft surgery, so it healed funky, with folds and weird scar tissue. Happens to many people with skin grafts.

But when there are folds in skin, it can remain moist there, and can get infected. I'm really careful about soaping it up in the shower, and gently drying it with a Q-tip afterward. Sometimes it chafes and gets rashes. Now it's cracked open, and leaking out pus all the time. I've tried topical antibiotic ointments and it didn't work. The thing remains open and sore. It doesn't seem to be a spreading infection, though, at least by the looks of it. It is red all around it, but not spreading.

Yesterday while I was bending down, my knee suddenly was really stiff and quite sore.
Today it was a bit worse-- stiff and sore. Also today I am so extremely exhausted, I could barely get out of bed.

Now this could be a zillion things...
1. I just spent three busy (and good) days in Jerusalem with my friends from the US, and I'm exhausted from that because I pushed myself a lot.
2. my knee has some arthritis in it anyway, we know this, that can cause pain and swelling.
3. I am taking a teeny tiny dose of the medicine that is supposed to eventually replace my sleeping pills (which don't work anymore) and that could be having effects on me.

But I immediately jump to dark conclusions.
I don't know if you remember, but I tested positive for MRSA a few times. I picked it up in the hospital while caring for my friend, Sabrina (z"l). Seems I'm a carrier. No big deal, it wasn't making me sick. But with an open wound, a person who is MRSA positive can have the infection enter the wound. That is a big deal. Then it can become systemic. So here I am thinking that there is an infection going on inside which is not visible, and is causing my knee to swell because it is becoming systemic. That is a very big deal. That can be the beginnings of sepsis.

There is also another infectious looking thing on my graft in another area, and I thought it was one of the pins which holds the mesh in place trying to get out. It's like a boil-looking thing. But I looked up what MRSA sores look like, and it looks like it may be that. I don't think it's a pin trying to come through.

I did make an appointment with my doctor for Monday, the earliest she was available, but I'm thinking I may go into the clinic tomorrow because this is making me crazy. I wouldn't see my doctor, but I'd see a nurse, then a doctor, and maybe start on antibiotics. I want them to test the discharge from the skin graft opening, I hope they listen to me. I need it swabbed. The "system" is notorious for not listening to patients, though.

I did a little research today on the web about MRSA, and none of it is good. Some people had to be on antibiotics for a year before their infections passed. These are people who felt pain in their joints after an infected wound of some sort, and tested positive for MRSA. OK, I'm just not going to do more research, I've already wasted too much of my life on infectious diseases.

While I was in Jerusalem, I had an ear infection come and go, also. I think my body is fighting something. Anyway I'll start the process of finding out what tomorrow.

It's just such a head trip to have gone through something as heinous as NF. Convincing myself to under-react because my head is exploding with over-reacting to every little thing.

Speaking of a head trip.... my head sent me on another trip to the emergency room last Friday. We were in another city, up north in Tzfat for Shabbat when a deadly migraine hit. I had just sort of gotten rid of one Thursday, but I guess it didn't really totally go away. Friday was visiting day in the sleep-away camp where Azriel is, and I got up at 6am to take the train to see him. My family had gone up north on Thursday by car, but I couldn't go with them because of the migraine. By late afternoon I felt something Not Good happening headache-wise, but I still had hopes of staving it off. When we got back to Robert's cousin's house, I took all sorts of stuff for the migraine, and tried to rest. Nothing worked.

We had to drive on Shabbat, which of course we never do unless it is an emergency. And, well, it was. I could not take the pain anymore, I was nearly blinded again by that migraine. We got there, they gave me the steroids and Phenergan, we spent four hours there, then got back to Robert's cousin's house for Shabbat. Never a dull moment.

Let's hope I'm just over-reacting about all this infection stuff.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

PS- my talk at AtoxBio was an amazing experience for me. I had never told my story from the beginning with such detail to a crowd (small crowd) of people. We cried together. Three of my kids were there, too, as well as Robert, and I saw tears in my kid's eyes, too. They appreciated me, and got to put a face to the disease they are trying to create a medicine to combat. It was very powerful. I want to do it again somewhere else! I want to spread awareness about NF, it's the doctor's that need to know what to do. This drug would only be effective after diagnosis of NF, of course. I was in the hospital for three days in horrendous pain with no antibiotics and no diagnosis or treatment plan. That can't happen. Also, the people at Atox were enlightened as to how much this disease can change a person's life. I spoke about all the diseases and problems I've had since NF, and most people had no idea how much this can change a person's life.

You know what? Mostly I am missing the old "me" these days. The healthy me. I miss her.


  1. I'm glad the talk at AtoxBio went so well and was so meaningful for you, your family, and the rest of the audience. It's good for you to be able to feel that something good could come out of this. In the meantime, I hope and pray that you are over reacting, at that the current state of affairs will turn out to not be too serious. I also hope and pray that you can get your migraines under control very very soon! רפואה שלמה!

  2. Dear Sarah I am so sorry to hear how hard things are. And yet you are in your inimitable way always looking for ways to help others and do good. I hope that Atox are now fired up to find a way to use your information to produce something that will prevent others going through what you have done. I hope the scariest scenarios fade into the background and pray for you that this will have a simpler ecxplanation than you fear and that you can find some peace of mind. With love as always, Caroline

  3. You are an amazing woman Sarah! I too miss the old me. You have been so supportive of me since I joined the NF page. I pray that you get the answers you need and I hope you are overreacting. NF is scary stuff. And, you're right, nobody can even come close to understanding it unless they've had it. It's definitely life changing.