Medication Risks & Fears – Where Do We Put Our Hope?

I took my first shot of Humera Monday. I’ve been off of it since August 2008. It’s been a long wait as I went off of it due to a simple cold.  [It lowers my immune system so much, if I continue to take it while ill, I get very sick.]

The cold, however, was followed by cellulitis and edema in my leg, which led to an abscessed ankle wound, a staph infection, and then in November 2008, the flesh eating bacteria.

My rheumatologist “cleared to me” to go back on Humera last week, but a pin-drop size of scab was weeping on my hand wound, where I recently had four joints/knuckles replaced, and that made me nervous.

Before I had the flesh eating bacteria last year, I had known of the risks of infection on an intellectual level in taking these medications. But I did not experience the emotional level of fear of an out-of-control infection. The infection did not get into my open wound, but rather I likely touched something that had the bacteria on it, wiped my eye or nose, and the bacteria headed straight for my “weakest link”–a hole on my ankle where they had punctured it to rid it of the staph infection.

When I asked the doctor who treated my ankle wound how long it would take for a “healthy person” to recover (so I could double that time frame for myself) he said “Healthy people do not get this. And you are lucky you lived. If you have been diabetic, we would not have been able to stop the infection.”

For weeks after my 7-day hospital stay last year, I did not fully allow myself to think about what might have been. When I came home from the hospital and was finally able to look up the web site of the what is commonly known as the flesh eating bacteria,  necrotizing fasciitis: The National Necrotizing Fasciitis Foundation. Thankfully there was not internet access at the hospital or I would have been much more worried!

The front page of the foundation’s web site was full of stories. . . and a list of memorials. I read a couple of stories and quickly clicked away. I have not been back.

Earlier this year I heard Dr. Oz on Oprah say that 75 percent of people who are infected with this rare bacteria don’t survive to tell their stories.

I am extremely blessed to still be alive and to still have my foot. God worked it out so the cellulitis, a cold, a staph infection, etc. prevented me from being on this immuno-suppressant drug when I actually came into contact with the flesh eating bacteria.

I will never fully know how God placed certain events and even inconveniences in my path so that I would still be alive today. It sounds dramatic –but I continue to hear stories of adults, both young and, who did not make it from this kind of infection.

So, my rheumatologist told me three weeks ago I could go back on Humera. It took a week for the pharmacy to get it and then it sat in my refrigerator for a week until my wound healed and closed completely. The day I had planned to take it, my general practitioner physician called and said I was now eligible for the swine flu vaccination. So I went and got that instead and did not take the Humera that day.

I waited a few days… nervous… about it “it all.” My wound still was not completely healed from the joint replacements. This day that I had looked forward to for months was finally here.  It’s a good thing, because, now that I have begun taking it, hopefully in January I can decrease the prednisone, lose more weight, and slow down the progression of my cataracts. (I’m having cataract surgery in the new year.)

Going back on my medication has many benefits. Yet when I told my mom this weekend I had not yet taken it, my voice quivered. I’m simply. . . scared.

As with any illness the risk of not taking the medication is high. My hand, for example, was very deformed in 2008, but it became even more “diseased” in 2009, according to the surgeon. Part of the reason was that I have been off of my main medication over a year while fighting one infection or cough after another.

But the risks of taking the drugs are high too. Every doctor and surgeon dislikes hearing that I am on prednisone. I heal slowly. Infections are sometimes hidden due to the steroids and only discovered when I have my lab work done.

My point here is not to encourage anyone to take a particular medication. I was on Enbrel for many years and switched to Humera in 2008. If you have a chronic illness, you know that there are many factors for why you and your medical team choose the medications to take that you do. You may also believe in using alternative treatments and want to share with me how there are fewer risks involved in them than there are in the pharmaceuticals.  Regardless of what to treatment route you or I take, there is always risk involved and that is my hope in sharing this with you.

In this world of insecurities, we learn nothing is guaranteed. And so I cling to the fact that I don’t have to depend on the world, but rather on The Rock.

Medications, surgeries, therapies, etc. may all be necessary, but they are still shifting sands. One vote from congress and we may no longer be eligible for the medication that keeps us functioning. The contamination at a factory that produces one of our medications can make it possible to get for two years (this happened to me if years ago).

Matthew 7:24-27 says,

‘Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock. But everyone who hears these words of mine and does not put them into practice is like a foolish man who built his house on sand. The rain came down, the streams rose, and the winds blew and beat against that house, and it fell with a great crash.”

There is always risk. But the fortunately there is also hope.

The rain will come down, the winds will bloat, and sometimes the will come close to destroying us. But we always have the choice to accept Christ as our one true hope that we can always put our faith in.

So, I’ve taken it. And now I pray. And use a lot of hand sanitizer. And then throw those hands up in surrender. Thy will be done.

Lisa Copen is the founder of Rest Ministries. She has lived with rheumatoid arthritis and fibromyalgia since 1993 and makes her home in San Diego with her husband and six-year-old son. She is the author of “Why Can’t I Make People Understand: Discovering the Validation Those with Chronic Illness Seek and Why.”

HopeKeepers(R) Chronic Illness Groups in AK

Anchorage

St.
John United Methodist
Contact: Carrie Gruhn
Church phone: 907-344-3025
Est 9/06

HopeKeepers(R) Chronic Illness Groups in MD

Landover

Woodstream Church

Contact: Peggy Johnson
301-486-0077

Mitchellville

Woodstream
Church in Mitchellville (formerly the
Landover Memorial Baptist Church)
9800 Lottsford Road Mitchellville, Maryland 20721
Contact:Peggy Y. Johnson

Silver Spring

Covenant Presbyterian Church
Contact: Bonnie Wexler
301-649-4758

Waldorf

Trinity Baptist Church
Contact: Curt Becker
301-645-7889

HopeKeepers(R) Chronic Illness Groups in CO

Castle Rock

Calvary Chapel Castle Rock
Church phone: 303-663-2514
Contact: Dan Layne
Est 4/09

Lakewood

Bear Valley Church
Contact: Susan Paris, 303-988-9555

Littleton

South Suburban Christian Church
7275 S. Broadway Ave.
Littleton, Colorado 80122
Contact: Kelly Weiss 303-470-1518 or
KWeiss4471@aol.com
Meets every other Tuesday at 7 p.m.

Westminster

Family in Christ Community Church
7777 West 99th Place, Westminster, CO 80021
Contact Sarah Clausen 303-469-3567

HopeKeepers(R) Chronic Illness Groups in NC

Arden

Biltmore Baptish Church
Contact: Elizabeth Durham
Church phone: 828-687-1111

Brasstown

Truett Memorial First Baptist Church
Contact: David & Mary O’Connor
Church phone: 828-389-1053

Hope Mills

Southview
Baptist Church
Contact: Jessica Barefoot
Church phone: 910-424-1298
Est 4/09

Morehead

Morehead City, NC
Rev. Jimmy Mack
Contact Rest Ministries
for details.

Rockwell

No church listed
Rockwell, NC
Jane Cline Allen
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for details.

Statesville

Western
Avenue Baptist Church
Contact: Ellen Fox
Church phone: 704-873-6397
Began 2/06

Valdese

East Valdese Baptist
Church
Church phone: 828-874-0511
Contact: Beth Davis
Est. 4/09

West End

New Covenant Fellowship
Southern Pines, NC
Contact: Iris Harrill
Church phone: 910-528-6797

Wintervillle

Covenant United Methodist Church
Contact: Rhonda Hickman or Kelly Paris
252-355-0123

HopeKeepers(R) Chronic Illness Groups in KS

Concordia

Baptist Church
Contact: Kathy Schmitz or
Michelle Steffen
Church phone: 785-243-3756

Covington

Daybreak Community Church
Contact: Rev. Sherri Chapin
Phone: 859-291-5907
Est. 6/06

Kansas City

Cornerstone
Community Church
Contact Pamela Noah

Manhattan

Westview
Community Church
3001 Fort Riley Blvd., Manhattan, KS 6650
Church phone: 785-537-7173
Contact: Susie English

McQuady

Corinth Baptist Church
Contact: Debbie Cottrell
Est 4/08

Ottawa

Agape Christian Center
Contact: Debbie Mumma , not active,
but you can contact her.

Stockton

Community Group with involved Churches
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785-425-6250 (home number)

HopeKeepers(R) Chronic Illness Groups in SD

Kim
Est: 3/09
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HopeKeepers(R) Chronic Illness Groups in ME

Waltham

Family
Bible Church
Contact: Ellen Beauchamp
Church phone: 207-584-3288
Est 10/07

HopeKeepers(R) Chronic Illness Groups in SC

Columbia

First Baptist Church of Columbia
Contact: Pastor Dennis Banks
Church phone: 803-256-4251
Est. 11/04

Greenwood

Grace Community Church
Contact: Tommy and Bonnie Boyd, Roxanne Ford
Church phone: 864-229-6002

North Charleston

Northwood Baptist Church
Contact: Sharon Willis
Church phone: 842-553-3281

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