Monday, June 2, 2008

I'm not Afraid of Needles...



...But I am scared of the dark; dingy, cavernous basements; and mice.

So I'm 33 years old and I'm still afraid of walking my pugs at night by myself, I admit it. Nonetheless, over the years, I've grown accustomed to many of the not-so-pleasant aspects of having Lupus. As many things as I've been able to overcome, it always surprises me when I find myself dreading or being scared of some aspects of my disease. After eight years, there are still just some things that I don't like. Here's the rather curious list of the things that I'm afraid of, and those that I am not!


Not Afraid: Going to the Hospital
Afraid: Staying Overnight

Not Afraid: Blood Transfusions and Endoscopy
Afraid: Chest X-Rays (that reveal pleural effusion!)


Not Afraid: Getting Pregnant with Lupus
Afraid: Staying Pregnant with Lupus

Not Afraid: Needles
Afraid: Enemas (sorry I even mentioned it!)

Not Afraid: Adding a new medication to my drug regime
Afraid: Having a medication mysteriously stop working


Not Afraid: Paying (out the wazoo) for insurance
Afraid: Not being insured

Not Afraid: Living (well) with Lupus
Afraid: Not having the chance to tell people about it

(Although the book and this blog are pretty good outlets, don't you think?)

Anyone else have a list, Lupus-related or not?

4 comments:

DC said...

I love your list and share all your fears (including the dreaded pleurisy). Blech!

Christina said...

Just wanted to say I'm glad to see someone else shares many of my Lupus-related fears.

I would say some of my other fears are

1. My disease not being understood by my friends (new and old) and potential partners

But I'm not afraid to explain it to them.

2. Rejection by a potential partner because of the fact that I have Lupus which means that pregnancy is risky and may mean that I can not become or stay pregnant without risking my health.

3. When the time comes that I have children, not having the energy to keep up with them.

4. Feeling too anxious about something that it causes a flare-up in my symptoms.

Despite all these fears, I've accepted my disease and I think that's the most important step in trying to overcome some of these fears, and not let them overwhelm your life. I try to live each day to the fullest and try not to let them get me down :)

Sara Gorman said...

DC - Isn't pleurisy the worst?! Thanks for your frequent comments -I'm enjoying your blog equally as much!

Christina - Per your #1 fear, hopefully, you had a chance to check out the Lupus Lesson (the column on the side of my blog) that I posted this past weekend - it's an excerpt from the section in my book about, you guessed it, dealing with others who don't understand. I devoted an entire chapter to the subject, titled, "The Art of Communicating", because I believe it takes a lot of patience and skill to cope with those who don't (or can't) understand the disease.

And as far as the limitations with children go - I still have doubts about my ability to be able to care for this little life inside of me. I remember reading an article about a woman with Lupus who said that her daughter had come to enjoy the time they spent snuggled up in bed when "Mommy didn't feel good." This woman said her daughter just adjusted to many of the physical limitations she has...and that gives me great hope.

I look forward to hearing from you again!

The Singing Patient said...

great topic!

well i *am* afraid of needles! it doesn't matter how many times i've been stuck, and it's been a *lot* in 16 years of lupus, i'm still afraid. but maybe that's because i've had some really painful failed attempts at "getting a vain." so it's a rational fear...

i'm still afraid of transfusions. but then i had a really bad reaction to a transfusion. so, also rational fear.

afraid of being in pain and not being able to get any relief.

no longer afraid of dying alone.

still afraid people will "find out" i have lupus - esp. professionally. i still hide it professionally because my field, performing musician/ comedian, is *really* competitive, and i've had to cancel gigs because of illness before. i don't want them to know it's chronic or they won't want to hire me! ironically i'm generally *more* reliable than most people, because i will go on stage with a cold, or even a broken foot, whereas someone who isn't overompensating (like i am would) cancel the gig.

no longer afraid (not right now anyway) of being able to pay for my drugs (married with new plan!). still not sure how i will pay for the debts racked up from buying last year's drugs!

so yeah. i have a lot of fear, even after all this time, but it isn't paralyzing like it was when i was first diagnosed.

i no longer fear dying young.

and the gift lupus gave me was the courage to go after a career that i always wanted but was to afraid to go after- being a performing songwriter. i had horrible stage fright! but after nearly dying, and then coming back to life, i decided to get out and there start really living, living my dream, instead of hiding my true self.

it also puts things in perspective. it's not kidney failure? Then I can deal with it.

so, i still have lots of fear and anxiety, a lot of it because of the lupus. but i also have lots of courage, thanks to lupus.