Chronic Disease Complications

There are no shortage of chronic disease complications when you deal with chronic illness and complicated treatments.

It has been nearly two weeks since my last treatment and my IV puncture bruises have withered from a dark black to a morose yellow. You can still see the red puncture marks sitting like a bullseye in the center of the fading discolored skin.

But the side effects have been less slow to wear.

Last month, I spent 15 days after my treatments with a killer migraine and in a daze from the copious medications given to me at my 2 back to back ER visits.

This month, the headache faded after a quick 5 days. Perhaps it was the IV saline that my doctor ordered to possibly counteract the previous month’s debacle. Perhaps it was the gatorade that I didn’t stop drinking for 3 days straight (one before and two during). Or perhaps it was the praying, or pleading for that matter. Pleading that I would have a better month.

But each day of the last two weeks has felt like a toil. Short of breath when I stand. Muscles trembling with little resistance. My mouth muscles quivered at the audacity of the glass of water to ask it to work.

Each day I get weaker from laying. I try to sit up or walk downstairs but it feels as if the air has the same resistance as water.

Today, the symptoms are finally fading. Another two weeks gone so fast–and yet, so incredibly slow.

With any luck, I’ll have two more weeks of feeling better before the positive effects of the $30,000 dollar a month treatment wear off and I’ll find myself back in the infusion center recliner with fresh new black bruises wrapped with nonstick tape.

Sometimes it feels so futile.

I realized this week how few choices I have–if any at all.

I’m too afraid to stop the treatments that wreck havoc on my body for fear that I will get worse and regress to the state I was in before I started almost a year ago now. More scary than getting worse is the fear I will never get any better than I am now. At the same time, each month, as the time approaches for my treatment, I’m filled with dread to do it all over again. Will this month be better or will I struggle for weeks with complications?

The prospect of continuing treatment “indefinitely” scares me endlessly. What will my life look like? Can you call it a life?

I feel more like a clock you can set your watch by. Treatment, side effects, a week maybe two where I can visit my friends for an hour or write, and then the slow but steady decline of physical ability that pulls me harshly back to that recliner. And start all over again. Wash. Rinse. Repeat.

My hope is in this thought (and please excuse the unapologetic Hellen Keller quote):

“Believe, when you are most unhappy, that there is something for you to do in the world, so long as you can sweeten another’s pain, life is not in vain.” -Hellen Keller

So I press on clinging to the possibly futile thought that I can get better. And hoping there is something for me to do in this world if not.

One Comment on “Chronic Disease Complications

  1. I’m so sorry. I’ve been sick for 25 years, myself. I understand. Thank you for expressing the fear and despair we feel at the thought that we may never get better. I feel there are so many posts expressing so much optimism and strength, and these just make me feel weaker for not being able to be optimistic myself. For what it’s worth, it makes me feel better to hear someone else express what I’m feeling. I wish others wouldn’t be so afraid to let down the optimistic front and share what’s underneath.

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