Do you ever feel like you take things for granted? A place to live, food on the table, clothes on your back, friends and family who love you...... how about your vision, your hearing, your health? My life is pretty blessed. I have all those things I mentioned and more. And yet, I complain that I'm tired or that I have to spend all day driving around (instead of being thankful that I have a car and enough gas to get me places!). So many people have far less than I. So I've been really mindful lately of my ingratitude for the little things.
The last few weeks have been surreal at our house.... well, particularly the last few days. Kat's symptoms have spiked again and she's got no meds to regulate them or to give her relief. The "usual" pain meds -- acetamenophine, ibupprofen, morphine, codeine, etc. -- have no effect on her. Her neurologist took her off all meds (Diamox, Topamax) a little over a month ago. Which leaves her to battle her constant (24/7, literally) headache alone. And that headache comes with eye pain, dizziness, nausea, and vision abnormalities. Fun, right? Um, not really.
I watch her as she struggles to live a "normal" life, going out with her friends and listening to her music and playing with her dogs; even just watching movies on the computer. She has to pick and choose what she does because more often than not, she's feeling sick to her stomach and every activity takes effort and then she pays for it afterward with headache spikes or vomiting, and sometimes (like this week) both. But what is she to do? She doesn't want to just lie down and let life pass her by. And I don't blame her. That's no way to live.
Her doctors are second-guessing themselves and their predecessors as to what she has -- she was diagnosed with Idiopathic Intracranial Hypertension (aka Pseudotumor Cerebri) 2 years ago but we changed insurance several months ago and her new doctors aren't sure that diagnosis is accurate despite her symptoms and the fact that the ONLY time she gets any relief is immediately after a spinal tap (which removes some of her cerebrospinal fluid). So they've taken her off everything and instructed us to just watch how she does.
Naturally, we're looking for new doctors who will help her rather than give up on her. She has an appointment with her regular doctor on Monday, at which time we'll demand meds and a referral to a new neurologist and an ophthalmologist....... okay, maybe not demand but strongly request.....
In the meantime, she suffers. And I feel helpless. I mean, a mom is supposed to take care of these things, right? Yet all I can do when she's vomiting and complaining of dizziness, swirling vision, and severe headache is remind her that we'll see her doctor next week and try to divert her attention to something else. My heart breaks. And inside, I rage at a system that can't/won't find a way to help my girl -- while raging at myself for not being more proactive about getting her the help she needs.
In light of what Kat's going through, everything else shines like the enormous blessings that they are. Any time she's not as dizzy as she was the day before, anytime her headache is down to a 6 out of 10 on the pain scale, any time her vision is fairly stable is cause for celebration. I should be this mindful of the little things at all other times in my life. Why does it take suffering to shed a light on blessing?
~ Pia
So sorry Kat is so sick. It's so hard to see a loved one sick and the docs can't seem to help. Really makes you understand why doctors have "practices." It's frustrating they don't know the cause of the problems. to you and your family
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