After a good respite off the antibiotics (ended on Thursday, just a few days ago), I had a better Friday and Shabbat. I actually felt pretty good, feeling my body heave a sigh of relief that the antibiotic overload of 15 days is over. I slept at a friend's house Friday night, and slept pretty well. I walked to shul on Shabbat, socialized while there, walked home (very slowly and with discomfort, but got home nonetheless). It was all pretty good, albeit light-headed and a bit dizzy, which comes with the territory after all the meds. Oh, and the little wound from the infection is still sore, does not like stockings or anything tight at all, and is still secreting 'stuff' (which means that there is still some road into the wound. I'll feel better when that closes up). We are looking forward to closing that chapter, but as long it takes, it'll take.
For some unknown and unexpected reason, I got a mama of a migraine last night (sat night). OMG, it was horrendous. I had a bad bout of throwing up [and yelling, but nobody came! Nobody heard me in our private bathroom at the back of the house. Sometimes this house is just too big.]. Yeah, it was *bad*.
Today, I stayed in bed, exhausted from the awful night.
I can't STAND losing days to illness. So, so, so many days spent unable to be in the outside world. I have not come to terms with that as my lot in life. I still, somehow, expect that I will completely heal and be "normal" again. When I called a friend today to bring me a strep test from the pharmacy, she came in, and I saw on her face the goings on of life. I was envious that she can be out and about and I cannot.
I had a bit of a fever today, don't know if it is significant or not, or just being run-down. Sore throat, too. That got me a bit nervous about strep (although I never get it in my throat), so I did a strep test. Negative, thank Gd. I am sure also that the antibiotics are still in my system and hiding and/or still killing bacteria, so getting a bacterial infection now is highly unlikely.
Anyway, I am in a depressed mood. Who wouldn't be? I want my life back. My energy, my smile. Not much of that going around these days.
I feel so bad for Robert. He came home this evening from work, instead of having his weekly one night/morning free of kids. After the migraine and bad stuff of last night, he knew coming home tonight would be really good for me. The older boys have a two-day trip tomorrow, and have to be at school at 6:30AM. He will get them there.
It is hard on Robert to have me for a wife. That is one of the most awful feelings I have. He doesn't deny them, either, but goes about what has to be done because the fact is the fact... these are the cards on the table. What really do I give him? Hardship and frustration.
There are so many intricate dynamics that happen in a family with one parent disabled. Especially if it is the mom, and especially if the kids are young. It is impossible to explain how it feels; the imbalance of give & take, living with someone who you never know from one day to the next is going to be active or able to join in regular family duties or not. If that person will get sick from one day to the next, and if so, is it serious, or not-worrisome. The kids see me in my pj's/robe a lot. What does that do to them? And no, I don't get dressed every day for their sake. That has been suggested to me, but not every suggestion is a fit.
How do I feel when my kids come home from school (having been picked up by others) and I am up in bed? I call down to them, or intercom down, and one picks up, unaware that I was even home. I feel awful for not feeling up to meeting them at the door. Yes, it is that extreme on these days. The whole family gets used to a crooked, unbalanced family. There is always an underlying tension wondering what will be with mommy today. It is like a family which functions on a totally different level than any other of their friends.
When I talk with the parents of my kid's friends, or others who don't "know", I feel like I am playing the "normal" card. I look so normal and healthy on the outside, and I can play that card for a while, but not too long. I wonder if my kids also are ashamed that our family isn't "normal"; that their mother is in bed a lot.
I HATE being in bed so much! I am losing my strength. My mother, who is completely bed-ridden, tells me to get up and go-- go do anything you can until you can't. For her sake, go walking, go out.
Well, a bit more than a week after another heavy infection, smaller but significant issues coming and going (migraine, weakness, general malaise and depression). I suppose the depression is normal. I just want to be me again. Reliable, available, loving, giving, me.
The BarMitzvah is coming along, Baruch Hashem. Invites are out, a few other things ordered. We are now needing to close on what music will be there. I still have to outfit Ya'akov completely (including shoes). It'll be OK. I am less stressed.
I have a few doctor's appointments coming up as follow-ups to the infection I just got over- with the surgeon who put in the mesh, and with the gynecologist. And with my GP, and Dr. Z, the pain doctor... those issues still have to be dealt with, although ever sine I raised the dosage of the Fentanyl patch, my pain has *vastly* improved. More narcotics= less pain. I wish I had a better equation. My problems with digestive issues "moving along" seems to be reacting well to the homeopathy. That makes me *so* happy, you can't imagine. Gratitude and a heartfelt prayer afterward is a welcome relief, as well. There can be order among the chaos.
I am going to sleep now.
I want to ask Robert to make some eggs for me (I didn't have dinner), but he is exhausted and in a mood that he doesn't want any more hounding, so I'll just go to sleep. I'll eat tomorrow. Not much appetite these days, anyway.
- Be'er Sheva, Israel
- Being a doula, I regularly witness miracles. I see blood, sweat and tears, and at the same time, euphoric joy and awe. I help birth babies. I'm also an established orchestra musician, and a religious Zionist. In May 2007 I almost died. I had hernia surgery, and developed an infection 4 days later. It progressed to Necrotizing Faciitis (NF) and I landed in the ICU on a respirator. I woke up from the coma, slowly understanding that I had serious body damage, but everyone was glad to see me alive. Slowly the implications sunk in. While in hospital, my SIL started a website hosted by CaringBridge.org to inform friends and family of progress. When I came home, I took over writing. The posts were filled with blood, sweat, fears, and many tears. It started to feel like I was blogging, rather than simply disseminating information on my well being. This blog was born, about the next phase of healing. The original illness is over, but in the aftermath, I am fighting more rare diseases, and needing more surgeries. There are elements of illness-induced loneliness and pain, as well as plenty of faith and hope. I invite you to join me on my journey!