"Suffering the Slings and Arrows of Outrageous Fortune"

Em is 3 weeks past surgery and is doing better, finally. Still on pain meds, but generally starting to feel better. Her incision looks good and is healing nicely (a pleasant surprise), although, it is still painful. (To the point of having to wear dresses when she goes out in public, because she can’t bear any pressure on her tummy. A bit of a conflict for my non-girly girl!) She is finally getting up and around more and that will help everything – from morale to her pain in general.

This past weekend, she and a friend actually went to a movie (Hunger Games). We had promised her friend we would all go for her birthday but Em’s surgery interfered. So, we finally got to go and, while it wore her out for a couple days, she had fun and it was a big morale boost to hang out with a friend for a few hours. Yesterday, Em actually went shopping with us. It was just a quick trip to Walmart and she was in her wheelchair, but, still, it was a milestone. It is so nice to see her getting out of the house.

Last night, she actually went down and painted woodwork at my parent’s new house for about half an hour. (They are moving down the street from us and will be moving in in June.) I worried about her overdoing and she did complain of her back hurting, but, still, a few minutes of activity is good for her and she listened to her body and quit when she started hurting. Later, she took the cat out (on the leash) on the back patio for a while and hung out with her dad and me. All in all, she was more active yesterday than she has been since before her surgery.

Next week, we see the surgeon for a follow up appointment and then Em will start water therapy and will hopefully start building up strength that she has lost over the past few months. This surgery has definitely been a setback that she really didn’t need, but hopefully she will be able to build back up relatively quickly.

Her appetite is still very poor and she has lost at least 6 pounds – maybe more like 7 or 8. She isn’t underweight so losing a few pounds isn’t the end of the world, but she also doesn’t have a lot to lose before it becomes a problem and it is starting to concern me. My fear is she will be loosing muscle and she definitely can’t afford that! I think I am going to have to start keeping track of her daily calorie intake again, like last winter. She is back to eating watermelon and not a whole lot else again.

Watermelon is a low histamine food and it seems to be what she gravitates towards when her mast cells are acting up. And they are definitely acting up – surgery is a known trigger for  mast cell activation and she has been flaring big time since surgery. She is not having any flushing episodes that I have noticed, but she has the typical abdominal symptoms and  more dermatological signs than she has had in the past. Her stomach hurts when she eats and particularly after foods that are high histamine. Skin-wise, she has this odd sort of rash around her eyes. It is always there, worse at times than others and when it is bad, like now it is red, itchy and very noticeable. I would bet any amount of money that it is mast cell related. We have a lotion that we make with nasal crom in it that she can put on those itchy places and it helps for a few minutes, then the ‘rash’ comes right back. I think we need to go to a dermatologist but I also am convinced it is just a part of this flare she is in right now. Gastrocrom would help, if I could get anyone to give it to her!

She has another issue that is very common to EDS, but I am not allowed to mention constipation so I won’t.  😉

On the headache front, we think the baking soda tablets are starting to help – her headache isn’t completely gone, but is generally improving. She is now taking 5  650 mg tablets a day and I need to call and get the results from her latest blood test. This is a really rotten time to be trying to manage this, but I think we are making a little headway and we will happily take any improvement!

So, a mixed bag I guess but, generally, she is improving and whenever we are at least moving in the right direction, I am happy. Many of the issues she is having now, after surgery, are the same issues she was dealing with before surgery so there have been no real surprises. I am just relieved that we are seeing improvement and she is able to get out of the house and start living again!


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