this week’s update, november 2016, week 3

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So where are we this week.  These updates are really useful to me.  I really recommend writing down a status update for yourself every so often.  Depending how active your disease is, maybe you need to do it weekly, or monthly, or three monthly.  But it’s very good for me to see that I AM improving, and that things are changing, even when it feels like this acute illness thing has totally gotten out of hand and developed into a new chronic condition all of its own.

My liver function is improving.  Which is very cheering.  Enzymes have gone from near 500 down to low 100s.  That’s a massive improvement in under a week.  That makes me almost certain that Xeljanz caused the problem and that my liver will recover.

I am still quite acutely ill, however.  Food is a big problem.  I have been lax with my allergies, favouring any food that I can keep down over foods that I’m allergic to. So there’s been some cheese, there’s been some grain. Not a lot, but enough so that my throat is closing shut, and swallowing water is painful today. It feels like I am trying to swallow a golf ball.

I tried to eat some cooked chicken, and it became impacted in my throat.  The joys of Eosinophilic Esophagitis.  If you’ve ever had food impacted, you’ll know that’s exceedingly painful.  I’ll spare you the details on how I resolved that pleasant little situation, but it took me back to the good old days, when all I could eat was purees and liquids.  Months and months of it.  Again, because my doctors wouldn’t listen, and didn’t provide treatment.

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Anyway, moving along.  So I’m back to strict dairy free, grain free, seafood free, nut (except almond) free diet.

Everything I eat still causes abdominal pain, the degree varies though.

Fatigue is terrible. I am spending most of my time on the couch.  I feel ok lying down, even sitting up is OK for a while.  Then waves of tired overwhelm me, I feel nauseous, and I just need to lie down.  I wish my liver would get better faster.

I have a constant headache, last two days now.  I don’t want to take Panadol/Tylenol for it, because its hard on the liver.  I’m putting heat packs and ice packs on my head and I’m keeping oxycodone to the minimum.  Arthritis pain is not controlled, severe and most joints are inflamed.  I’m sure that’s not helping the fatigue either.

I want to exercise. I know that exercise will improve my pain, and fatigue. It will certainly make me happier.  But I’m not sure that exercise is OK with my current liver status.  I get the feeling that even the very mild walk on a treadmill or ride on a recumbent bike might make me feel worse, or just not be good for me. And the idea of getting to gym, and making myself sicker, and maybe needing help to get home, or worse, is just too embarrassing.  I mean, I know I have acute liver disease.  It does seem rather stupid to stress my body, and risk making myself worse, and dumping that problem in someone else’s lap at my favourite place – gym.  So I’m doing my stretches and some isometric holds.  Simple stuff. Light stuff. Not much at all.  Even just holding out my arms straight causes immediate muscle fatigue. Still feeling weak.

Yet on Saturday, filled with rage and premenstrual hormones I managed to mow my lawn.  Probably a stupid move, but it made me feel better.

The rage was because I was car parked. Some kind person ran into my car and damaged the front fender.  I was more than a little upset, it has been rather a rough run of late.  But  I called my insurance company, and the car will be assessed on Friday.  It is road worthy, and my insurance includes a hire car for the duration while it is being fixed.  It could have been much worse.

I left a message for my rheumatologist.  She is back today.  I also emailed her my liver function tests.  Unsurprisingly she has not gotten back to me yet, and it’s almost the end of her work day.  A decent rheumatologist would have made an emergency appointment, immediately.  On the upside, I got a hold of my bloodwork that I had done for her, 9 days before my emergency room visit.  Those bloods were completely normal, so she was not negligent.  Scary how fast things can go south though.

And I get distracted. Yesterday everyone NEEDED me so much. My daughter. My son. I haven’t talked to my mother in too long, so I needed to spend some time on the phone with her. I haven’t talked to my sister in many weeks, it was good catching up with her.  But in between all of these conversations I forgot what I was doing. I was blank. I couldn’t collect my thoughts, or my priorities.  I also had to go get dinner, but by 5pm I hadn’t done that either. My ex-husband brought dinner over in the end.  We still do regular family dinners, which I do so that my daughter has some contact with her father, otherwise she wouldn’t see him at all.

When she injured her fingers last week, one of the saddest things was her asking me ‘Did you tell Dad I’m hurt?’

When I told her ‘Yes’. She asked ‘Is he coming over to see me?’

Her face was so innocent and child-like. She was in pain. Vulnerable.  Needing some love and some attention from a person who is supposed to love her and give her that comfort when she’s in pain.

I have been her many times, wanting the same thing from the same man.  I recognised it all.

He wasn’t coming.

It hurt me when he wasn’t there for me. It hurts me ten times more to watch the hurt crumple up my daughter’s face, and perhaps even worse, to watch the pain disappear and be replaced with a hard, determined, set look that says ‘I don’t care, I don’t need him’.

I’ve been there too.  I don’t want her to become hard.

But I can’t protect her anymore.  He is what he is. He loves her, but he doesn’t prioritise her. That’s not what I call love, but that’s all he’s capable of.

My daughter got angry with me a few weeks ago. Told me I’d let her down because I haven’t provided her with a stepfather.  She needs a father, so I have to start dating to find a nice man who wants to be her Dad.  She has a list of qualities she wants me to look for in a man, for her.  Obviously that’s not going to work out, either.  She’s still desperately looking for a father figure.  Not only does that make me sad, but it worries me how vulnerable she is, and that she could be taken advantage of very easily.

But I digress. Fairly radically, in fact.  Life is complicated, and I just want to get well enough to get away for a while. A few days even.  Escape.  I’m not capable of being the responsible adult at the moment though and I’m not capable of driving.  Times like this I do wish there was someone else in the picture.  Realistically, I don’t have the energy to find someone.  Dating is hard work.

Most of all I’m too afraid to try.  The risk of getting hurt is just too high.

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