Wednesday, December 23, 2009

Living with RA: The Difference Enbrel Makes for Me

*** This post is part of my Living with Rheumatoid Arthritis series.

Do you remember my "Can't Do" checklist?
  • Unscrew a grape juice bottle for the first time.
  • Unscrew a pickle jar lid that had previously been opened.
  • Peel a potato with a knife.
  • Quickly descend a flight of stairs.
  • Stay awake passed 8 PM.
  • Open my mouth wide enough to bite into a hamburger.
  • Get up off the floor by myself.
  • Squat down to talk to a child.
  • Kneel on the floor.
Enbrel helped change all of that.  Nine years after I formed that mental list I can now do everything on it, except peel a potato with a knife.  Unfortunately, Enbrel CAN'T reverse permanent damage that already exists.

In fact, my current rheumatologist and I have joked that I do so well on the medication that I should be a "poster child" for Enbrel.  And now I am!!  :)

So, what can I do now?
  • Sit on the floor and play games with my daughter.
  • Push my four year old son on the swing.
  • Zip up my 1 year old's pajamas.
  • Cut apples into quarters with a knife every day for lunch.
  • Brush my daughter's hair into ponytails.
  • Take hikes with my family into the New Hampshire mountains.
The list of "Can Do" is endless.  The main thing is that I can do all the normal ordinary "Mom Stuff" that most moms do without thinking.

Enbrel helps me be the Mom (and Wife) I want to be.

And that is priceless.

But it isn't without risks.  The pamphlet enclosed with each month's supply (see right) details the risks of this relatively new medication:
"serious infections including TB; nervous system problems, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes; rare reports of serious blood problems (some fatal); heart failure, including new heart failure or worsening of heart failure you already have; allergic reactions; immune reactions, including a lupus-like syndrome and lymphoma (a type of cancer)."
Never mind just having to give myself a shot once a week!!

For me this is a matter of what WILL happen versus what MIGHT happen.  I MIGHT have one of those terrible side effects.  But without Enbrel (or a similar medication) I WILL have deformed hands in a matter of a few years.  I WILL have no energy to play with my children.  I WILL be unable to kneel, or squat or sit on the floor.

And so I choose to take the risk.

Disclaimer: I am not a doctor nor do I pretend to be one on TV. This post is intended to tell my experiences NOT to serve as medical advice. If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments).

1 comment:

Wherever HE Leads We'll Go said...

Much of life is about weighing the risks vs. the benefits of something. We have to make our choices carefully. Seems to me that you have made a wise choice!

I am so glad that you shared these stories. We knew each other at the beginning of this journey, but I don't think we knew each other well. So I am not sure I really knew or understood what was going on. It is nice to have a clear picture now of the road that you have traveled with RA. I think I have said this before, but I will say it again: I have no doubt that others will benefit from you sharing your experience.

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