It's funny how when you grow up, phrases and advice close relatives and elders give you, but, being young, you know everything and ignore it all. Well, except the things you get a Gibbs-style smack for when they know you're not really listening. I remember a lot of advice I blew off for years. Sometimes, no matter how bad you feel, take a few extra minutes to make yourself look better. Decent clothes, makeup, hair. As if somehow looking better on the outside will make you feel better on the inside. I do admit that sometimes this advice works, but I'm still getting used to the makeup thing.
Lately, I've been taking everything one day at a time. To do more than that is just too overwhelming. After a talk with a very trusted confidante the other evening, she told me that sometimes all we can do is put our hands out and leave everything in God's hands. She also admitted that she knew I didn't have fibromyalgia when I was diagnosed 9 years ago. She knew I was sick, but FMS wasn't it. Then came the diagnoses of Fifths Disease, Lyme Disease (8 times confirmed), Epstein-Barr Virus, migraines that progressed into several weeks of hell in early spring/late fall.... the vitamin deficiencies, the rashes, my reaction to the sun that comes and goes, the itching, hair loss, joint pain, fatigue, chronic fevers, the list goes on and on... And now "episodes." I looked into what was going on, as they're similar to panic attacks, but with marked differences and discovered that they are textbook partial seizures. And they're increasing in frequency. And I admit I've never been so scared in my life. I was relieved all those years ago that what I was feeling wasn't just in my head, I wasn't a hypochondriac, but I had something that had a name. And my doctors seemed satisfied and complacent with that. Every new symptom was blamed on residual Lyme Disease or Fibromyalgia and I was given more and more medication. Then I stopped taking almost all of them. I take my low dose anti seizure medications to control my headaches, a daily inhaler for my asthma, and a stomach pill for heartburn from steroids and weight gain. And hand fulls of vitamins a day. I'm so deficient in several vitamins that I require prescription strength and cannot take a once-daily multivitamin because of my iodine allergy.
I had to make the difficult decision to take a medical leave of absence from college to find answers.. even if that means becoming a pin cushion, poked, prodded, scanned, and possibly electrocuted (nerve function tests) before my dream of finishing up to a PhD and a chance at a new career are taken from me again.
I say again because over 9 years ago I lost my career as a mechanic. While in a 2 hour meeting with an administrator at school, the woman had asked me if I was familiar with the 5 stages of grief because I was so stubborn to try to keep pushing through school. I couldn't help but laugh, as I'm a psychology major and it's something that's taught in Psych101. Then I began to cry because I had been through the entire range of stages including accepting I will never be a mechanic again and even though I don't look it, I am sick. But it's like it's happening all over again. Most of my family doesn't understand and I have lost a lot of people I thought were friends because of my health. I don't look sick, some days (rarer and rarer now) I don't feel sick, and when I'm out in public I'm good at hiding it. (Goes back to the hair/makeup/clothing thing, though really good makeup can hide a lot)
It also doesn't help my case that I have one parent recovering from heart surgery and going in for a minor procedure this coming week and another parent who is only alive because she's on dialysis 3 days a week. I pick up the slack when I can, do what I can, but sometimes it doesn't feel like I do enough. It also doesn't help that my puppy managed to knock 2 of my mother's teeth out LAST WEEK and I only just noticed it tonight. I mean, how do you not notice that when you see and talk to the person every day?
So for now, it's a hurry up and wait deal. Again. Doctor's appointments, tests, waiting for results, and forcing them to find out why I'm so sick. It's not a pity party, it's not a cry for attention... it's real. And knowing if they don't try--if I don't try--to find answers, I might end up exactly where my mother is in less than 20 years. That's not a long time at all. So I've put my faith in His hands, when I do go out, I take the time to look nicer than I used to, and pray for real answers.
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