Tuesday, May 29, 2018

Bronchitis, Options, and shoe shopping

When I lived in Boston, I used to get bronchitis every winter, and the cough would last for months thereafter. Sometimes I took antibiotics, but it didn't seem to help. It was probably viral.

When I moved here, the frequency lessened (much easier climate!), but I still was prone to bronchitis every now & then. Especially when I was pregnant, I used to get it with each pregnancy.

Now I have it again. And no, I'm not pregnant. Just sick. And sick of being sick.
This particular round of bronchitis has been particularly bad, kind of similar to the one I had two years ago... (here) when I had internal bleeding from the coughing. I have had fevers up & down, too, over the last few days. Really, really unpleasant.

At one point on Shabbat I couldn't rest because of all the coughing, and I was in horrible pain, so I decided to take a cough medicine that Robert bought in the US, an over-the-counter thing. I haven't been taking much at all in the way of Western medicines, I'm nearly off everything (!). My body went into a bit of a shock... I actually hallucinated with this simple over-the-counter cough medicine (Mucinex). Real hallucinations-- like clowns in the back of a big truck, and also being in a library next to a card catalogue wall (remember those?), and actually one amazing thing was that my mother (may her memory be blessed) came to me. Not the sick, bedridden mom that I had in her past 4 years, but when she was maybe about 45... healthy, young, pretty. She came to me (I think I had called out for her literally), and started stroking my curly hair away from my face saying "yes my doll, I'm here, everything is OK". Then I lost it- started really crying. ("mommy!") And I was home alone, Robert & the kids were out at friends for the Shabbat meal. But, even though it played tricks with my mind, it stopped my cough for a while and gave me some desperately needed rest.

I have actually been taking that medicine at night, because it helps me sleep. The hallucinations have stopped. I can't use my medicinal Cannabis when I have such a bad cough, so this cough medicine helps me sleep.

At first I was getting the pain from the "anchor" clip of the mesh in Gapey, and thought that internal bleeding was happening again, but today it seems better, not so purple. I can see the blood pooling behind my skin graft because those clips get so irritated with the cough.

Which brings me to the discussion about the mesh and clips... I'd like to get them out. Well, I shouldn't say "like". But, I think they might be responsible for my abdominal pain and inflammation. I don't know that for sure, but I have reason to believe, that's obvious.

But it's not that simple. They are holding me together. That big piece of mesh is representing half my stomach wall muscle. If it was taken out, there would be nothing there. I have NF to thank for that. (I remember the surgeon from the NF telling me that the bacteria got a "tiny bit" of muscle).
My options for reconstruction are not good ones, either. Option one is with a muscle graft from my own body- either from my back, or a part of my calf muscle. That would leave me with another big wound to heal, along with a major abdominal reconstruction. Not savory. Option 2 is using a cadaver muscle. I don't have enough information about this, but it seems I'd have to be on immunosuppresants for quite some time after surgery, so my body doesn't reject it, and that isn't ideal obviously, either. The idea of a survivor of NF (and a zillion infections since then) going on immunosuppresants is, well, at best, counter-intuitive.

But what *really* are my options? To stay in pain from now until I die? That's such an awful option, I can't list it as an option. To return to treatments with Dr. F when I see that after so much hard work (on both our parts) the pain returned as if nothing had changed as soon as I had to stop treatments? He's returning at the end of the week. I don't know if I will resume treatments or not. It's extremely expensive, and I was hoping for more improvement by this time. I don't know if I should return to him or not. The treatments helped while I was doing them, but there doesn't seem to be much, if any lasting effect. He is quite sure that I haven't had enough treatments to really know for sure. His original estimation of one month of treatments for every year I've been sick, well, that's only been less-than-half fulfilled at this point, so he is telling me I am not giving it a fair go if I leave now.

Other options..... More abdominal surgery? Or stay in pain? Neither, thank you. I just don't know if there are any other viable options. So far no surgeons here will touch me, and the words of my last surgical consult with the top guy in Hadassa Ein Karem hospital in Jerusalem are ringing through my head "not only am I not going to operate on you, but I am telling you do not let anyone else operate on you. You could easily be put in a much worse situation". It all makes me want to curl up and die, honestly. It's easy for him to say that, he's not living with constant abdominal pain.

I am considering getting consultations while I'm in the states. But if someone puts forth viable plans for a doable reconstruction (big *if*), it's a complicated decision. There are the obvious reasons which I stated above, but also time constraints. I'll be in the states in August, and will be doing some consults in mid-August. But, Azriel's BarMitzvah is at the beginning of September, so I couldn't do any surgery until after we came back to Israel for his BarMitzvah, and then return to the states again after all the Jewish holidays in September/October? And doing surgery in America, who will be with me? Who will take care of my kids? We're talking a minimum of 6 weeks before I could travel after a procedure like we are talking about. I remember 6 weeks after the surgery to install the hardware-- I was in horrific pain, nowhere near transportable. (THIS blog post is from 5 weeks after that surgery...) It makes my head spin.

Then I think, I should go back to Dr. F (I have a tentative appointment this Friday), and put all my eggs in one basket (as if I have any eggs, or baskets, for that matter) and pay huge amounts of money for an unknown result. I've been doing that already.

As I said, it all makes me want to curl up and just not wake up one day.

But I am not dying, I do wake up every morning, whether I want to or not.

I do what I can for and with my kids, but that is less and less as time goes on. I haven't cooked a meal in G-d knows how long. [but after I wrote that sentence I decided I'd cook dinner last night. I did, and the kids loved it. But I was in such a foul mood, life is just too damn hard.] I took Dov shopping yesterday, it was a rare opportunity to spend time with him; he is so rarely home. What a special, amazing person that boy is. He hadn't been home for a month when he returned this Shabbat. He needed shoes, so me & my bronchitis and fever took a bunch of Tylenol's and went out shoe shopping with him. Then today I took Azriel shoe shopping (they needed different stores, I couldn't do them both at the same time.), after taking more Tylenol's. And I'll try to make some sort of dinner. Because I *am* alive, and Hashem still thinks I'm worthy of mothering these children He has entrusted me with. But if it weren't for them...?

I don't know how any of this is going to get resolved. I do plan on keeping writing though, so we'll figure it out. Or not.

How low does one have to go before he gets to see the promise of hope?

Everyone tells me it's unacceptable, not allowed in the least to give up hope.
I guess they don't know what this feels like.

1 comment :

  1. Give up hope, zone out in front of a mindless show, and pretend that that is all there is.

    Get sleep. Forget about tomorrow.

    And then wake up, and push a little bit more.

    It's ok to give up sometimes. That's part of the process with chronic pain.

    We're here for you, with you. I wish I could help you. I can't even help myself, except to say that Buffy the Vampire Slayer was a really good one for me when I felt weak and pathetic....

    Sending love!