The stomach pain really had us worried earlier this week. Usually her pain is located around her belly button and is fairly mild (I figure it's probably usually gas, but because of her sensitivity to pain it feels uncomfortable). She doesn't complain too much. She'll tell me it hurts and then move on. But on Monday she was complaining about it hurting alot and also was saying that her right hip hurt. I didn't think much of it, figured it was just joint pain from all the wet weather we've been having. But her appetite was weird. She didn't even want to eat her favorite dinner. Tuesday morning she still had the pain and a low grade fever. I asked her to show me where her hip hurt. Turns out it was actually her abdomen that hurt, just above the right hip. So I pressed on it and she was almost instantly in tears. CRAP!
So now I'm losing it a bit. Of course my first thought was appendicitis. It would be most parents first thought when their child presents with low grade fever and intense pain in the right lower quadrant of the abdomen. But now I'm conflicted. She will usually run low grade fevers with a bad flare and she has some kind of abdominal discomfort every day. So what do I do? Is this unusual enough to warrant an ER trip or am I simply overreacting to a bad flare?
Well, long story short- I asked hubby to come home early and we spent 2+ hours at our clinic's urgent care. Blood test did not show any infection, so no ER. Thank goodness! But now I sit back and think "This is it. This is my life". My daughter has a chronic condition and it will always make deciding what is "unusual" very difficult. The idea that we have to figure what is "normal everyday pain" makes me want to crawl into bed and cry myself into a coma. And sometimes even her "normal" pain will present itself in a way that throws us off. And I have wonder if this flare was set off by what was supposed to be a fun family outing. Is 1 day of fun worth a week of her being miserable?
And now I'm feeling super guilty about telling Ryan to relax when he got upset about 3 weeks ago. We had decided to run errands together, get everybody out of the house. We just planned to go to Target and Winco. But, as soon as we started to get ready to go out, Mickey got cranky. Her temp went up and she was grumpy and easily irritated or upset. By the time we got to Target, she had completely shut down on us. She is sensitive to the bright overhead light and loud noises (since it was pretty crowded, it was very noisy), it sets off what I can only describe as an anxiety like panic attack, which flares up her Fibro . She was flushed, warm to the touch and was complaining of a headache behind her left eye. She used my jacket as a blanket and spent the whole time there looking pretty damn miserable. Ryan also has some mild anxiety in overly crowded places, so the two them were just making each more uncomfortable. I asked him to take us home so that I could put her down for nap and then he could go to Winco alone. He was understandably upset about the change in plans, especially since lately it seems like we're always changing SOMETHING because of how Mickey is feeling. I tried to tell him "this is just how it is. Sometimes she'll do well, sometimes she won't. Unless we want to go back to not taking her anywhere, we just have to learn to adjust to it." Now I'm attempting to tell myself the same thing. We have to learn to be incredibly flexable and to accept that sometimes plans will have to be adjusted or even cancelled all together.
I would love to say it's easy. That we are all incedibly understanding and accommadating. But it's hard. It's hard damn near everyday. Even the good days can have a gray cloud of "how long will it last" hovering overhead. I do my best to stay positive, to be the "strong one". But I don't always succeed. I admit that my new favorite spot to tear up a little is when I'm by myself in the sauna at the gym. For a short time I'm all alone, no one around to be strong for, no one to see me be weak and pathetic. People tell me how wonderful I am, what a good Mom I'm being, how strong and "together" I must be. I'M NOT! I have absolutely no idea what I'm doing and while I do a good job (most of the time) of putting out a positive attitude, inside I feel anything but. I'm scared, sad, angry, resentful and often I feel like a total failure. But I'll put on my smile and struggle through it. "Fake it till you make it", right?
Hopefully things will be better once we move. The dryer, warmer climite could help her symptoms a lot. And it will be nice to be near friends and family. To have some help when we are both feeling overwhelmed. To have friends that are caring and understanding that sometimes plans may need to be adjusted, rescheduled or cancelled. To have more people around me so that the job of providing comfort and adult interaction does not all fall onto my husband. To have more time to spend "just the two of us" and more time to spend apart ;) (don't get me wrong, I love my hubby dearly, but sometimes you need to do fun stuff APART and we don't really get much of that).
How could you not just love this face! This was back when her Fibro was just starting to get really bad, before we had to cut her hair super short because of her headaches.
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