Okay, so where was I? Oh yeah. First MRI. Scary stuff. And noisy. And they cost more than most people in the world earn in five years. I’m not joking. My first one, 22 years ago, was over $1,200 for the entire spine. I thought that was outrageous. Now, the entire spine over $18,000! I mean, I know those machines are expensive, but they run them 24 hours a day at the hospital where I have it done. They have to have paid for themselves after a year or two or less. I mean, what’s a person living on disability suppose to do? That’s my rant and I’m sticking my it!
If you’ve never had an MRI, they can look scary. And if you are in pain, laying there for 45 minutes to 1 ½ hours is hellacious….so take your pain medication if pain is a problem for you. Also, if you have claustrophobia, get your doctor to give you a valium or something but then you need to get a ride to and from the MRI. For me, it works to close my eyes and picture myself someone soothing…but that does not work for everyone. Also, make the follow-up appointment with your doctor when you schedule the MRI so you don’t have to wait forever to get in. It doesn’t have to be the same day, just make the appointment before having the MRI.
My job in life is taking care of the business of being sick. It means checking every EOB (Estimation of Benefits) that the insurance carrier (Medicare in my case but I use to have private…until the premium was as much as my rent….for ONE person…so I lost it). You learn to pick your battles. I call and ask for a charity applications from providers of care most of the time. Or payment plans that are so low it’s ridiculous. But having gotten rid of cable and any and all frivolous things (with the exception of Netflix) and eating less of my favorite things (no appetite anyway), I don’t feel guilty about asking for that kind of help. I do everything I can to save a nickel here and a dime there. You have to, especially in my situation.
Since I am discussing what my “job” is, I want to mention just a couple things that will help you manage your illness.
1. When you go to an important doctor appointment, either take someone with you if possible, or take a little hand held tape recorder. These are important appointments and you don’t want to forget what has been discussed. If you take a friend, have them write things down for you.
2. If you are on a lot of medication, make sure you keep a “day at a time” calendar and write down when it’s time to order the meds….give it plenty of time if you can. Class three drugs can’t be filled before the time is right, but you can get your doctor to send you the prescription so you have it to take to the pharmacy.
3. Speaking of pharmacies. Pick one you like and stick with it. Changing pharmacies is a red flag for the people-who-hate-people-who-take–painkillers-even-if-you-are-in-agony and there are plenty of those around. Read my post about my pharmacist experience in “Pharmacists and Other Sorted Judges”. It was a grim experience, but taught me much.
4. Find out about all the financial help you can get and GET IT. It’s a lot of work, but your wallet will thank you. For instance, my Part D Medicare (prescription drug coverage) plan has “extra help” for those that need it. The application is easy, you just tell them how much you get from disability (if you are on it) and what your expenses are (they like it when you don’t have cable and all the little extras in life), send it in and if you are approved, it’s discounted and you pay less.
5. One last thing and it’s very important. If you are looking for specific medical answers to your problems DO NOT spend a lot of time reading horror stories on the Internet whether it’s about NF or some other ailment. I’m not doling out medical advice, just sharing my experiences. That’s fine, if you want to read horror stories that don’t give advice….I try not to be too brutal. It’s very important, if you ARE looking for advice, to go to the sites where they are medically qualified…and even then, you don’t know who they are so it’s best to go to a doctor who has been recommended to you by someone you trust. Besides, some of that stuff scares the heck out of me!
I realize much of this is for people who live in the US, but if you live elsewhere, some of this applies to you as well.
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When I think of how much faster we now move through the world it is mind boggling. I mean, a weeks vacation during summer felt like ALL summer when I was a kid. Now, a week moves like lightening speed, and it isn’t just about growing older. Everyone feels like that in this, the digital age. So much lost, not to be gained back. Every generation says that, it’s true.
But my losses are different. Because it isn’t just about reminiscing over someone I once had, for I had nobody other than a series of one night stands and a few “if only’s” Nothing lasting. As I mentioned earlier, I knew at 15 I would never marry. Knew it like I know my own face. Knew I would never have kids, never love anyone romantically for any length of time. I just knew. And it had nothing to do with my illness. I just knew I didn’t have what it takes. But that doesn’t mean it can’t happen for YOU. Because people who are sick DO fall in love, get married, have kids. So if that’s what you want, GO FOR IT. Go for it all. It’s there for the asking….I just didn’t ask.
So I’m here for as long as I’m here, I guess. Every day is a challenge and a gift. I’ll keep writing, hopefully you’ll keep reading. Find something that you like to do that you can do, whether it’s reading, keeping a journal, raising your kids, taking care of an animal and most importantly, taking care of yourself. And if you don’t have the energy for much of anything, that’s okay. My therapist tells me my job this time around is just To Be. Like the verb, you know? You don’t have to sit on a mountaintop contemplating your belly button.
But you can contemplate yourself, your life, the people you love, etc. And laugh. Laughing helps. Really. Click on the YouTube at the top of this blog (to the right) That laughing baby lifts my spirits no matter what. I’ve laughed like that…so hard you lose your breath.
And thanks for reading. Feel free to leave a comment if you like!
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