Treatment Catch-22

Catch-22

  1. :  a problematic situation for which the only solution is denied by a circumstance inherent in the problem
  2. a: an illogical, unreasonable, or senseless situation b: a measure or policy whose effect is the opposite of what was intended c: a situation presenting two equally undesirable alternatives

Last week I was talking with a couple of people when one of them mentioned that they had been placed on prednisone for an allergic reaction to a bug bite. This person said, “I got off of it as quickly as I could because that stuff isn’t good for you!” Without really thinking I said, “Kim’s been on prednisone since last October.” Immediately, they both started telling me that we had to get her off of it right away. I tried to explain that we were trying to taper her off, but that she needed it just to get through a day. After a couple minutes of trying to explain I just gave up.

Yes. We would love for Kim to not be on prednisone and she has finally tapered down to just 3 mg a day with further reductions to come hopefully. Yet the reaction I received is one that we’ve dealt with a few times and for those in the RAD community it’s a frequent conversation. Many people without an autoimmune disease don’t understand why patients like Kim take all of these drugs. Many of them think that we blindly follow whatever the doctor prescribes with little if any thought about the implications of those medications. The reality for Kim and I, as well as others within the community, couldn’t be further from the truth. We know exactly what we may face in the future due to the side effects of the drugs.

I cannot speak and am not speaking for anyone else who has RAD as to why they have chosen the medications that they are taking. I am explaining only how Kim and I have come to the decisions that we have. The answer — in one sentence — is that we hope the medications Kim takes will slow the disease that is attacking her. Here are a few of the medications she is currently taking and some of the possible side effects;

  • Prednisone — Potential side effects include cataracts, high blood sugar which could lead to diabetes, loss of calcium from bones leading to osteoporosis, increased risk of infections, increases cholesterol increasing risk of heart disease.
  • Hydroxychloroquine — Potential side effects include damage to the retinas leading to severe vision problems, possible liver damage.
  • Methotrexate — Possible side effects include sores in mouth and on lips, liver damage, lung damage, increased risk of developing lymphoma, weakens the immune system causing one to become more susceptible to infections.
  • Humira — Possible side effects include weakened immune system making one susceptible to all fungal, bacterial, and viral infections, tuberculosis, nervous system problems, liver damage, heart failure, lymphoma.

This is just a partial list of the possible side effects of the drugs Kim is on and I’ve only listed four of the dozen or so drugs and supplements that she takes. So why, when we look at the list of side effects like above, would we be willing to agree to such treatment?

The answer is really simple — we believe it provides her with her best life now and hopefully in the future. The answer is simple, but it isn’t easy. We had long talks about the decisions that we needed to make. We researched the drugs and their side effects and we then agreed together that we needed to do everything we could do medically to stop the progression of the disease. Many of the medications that Kim takes work by attacking her RAD. Her medications do two things for her. First, they help to alleviate some of her symptoms such as pain and swelling and secondly, they help to protect her joints from further damage.

We only need to look at how rapidly she declined after being diagnosed last October. By Christmas of last year she was struggling to walk, couldn’t cut her own food, and was declining daily. We are convinced that had we not sought very aggressive treatment for her that she would have been in a wheelchair by mid-Spring. Instead, she is currently responding well to her medications and is able to do things she couldn’t do six months ago. Is she back to where she was pre-diagnosis? No, and she may never get there, but she is doing remarkably better than where she once was. We can’t even begin to imagine what she would be like without any drugs.

So in a very practical way we are practicing carpe diem. We are seizing the day and the moments now. Faced with a medical catch-22 and not liking either of the two alternatives we were given, we chose the best life for Kim now and — we believe — the one that will protect her joints and give her the best quality of life for the future. Do the potential side effects worry us? Yes, but not that much. We know they exist, but we face today what has been given us today. Jesus said in the book of Matthew to “not be anxious about tomorrow” and Paul tells us to “be anxious for nothing”, but rather to bring our requests to God in prayer. We know and rest in the fact that God knows exactly what He is doing with Kim’s health. He has purposed the beginning and the end and has promised that regardless of what may happen that His grace will be sufficient. So we praise Him when Kim feels well and fall into His caring arms when she is suffering. Ultimately, we trust His goodness regardless of what may come.

For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11 ESV

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1 Comment

Filed under God, RAD

One response to “Treatment Catch-22

  1. gimponthego

    Thanks for sharing a little bit about chronic illness from a spouse’s point of view. I’m definitely going to direct my husband here, as well as add you to my blog roll. There don’t seem to be many resources or places to share about the toll chronic illness takes on the people who love you. I, for one, would much rather be sick than have to fill my husband’s shoes.
    Keep it up!

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