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Eve's Blog: Suviving FSGS & CKD

evelyneileencawley@yahoo.com

Effing Side Effects

I’ve never been one to really take medications.  When I was in the hospital for my lung surgery, and I was in ICU, they offered pain medications but I refused them.

I guess I need to back up. In 2001, I was having difficulty breathing. I thought I had pnuemonia.  Terry took me to the ER and they did x-rays.  Two days later, I got a call from the hospital Radiologist telling me to come back in to have a secondary scan performed because something abnormal was found.  I went in and low and behold, I had a mass growing in my right lung. I had to have the mass removed and since, I’ve had to have a few operations as follow up. That was my first REAL surgery. I wasn’t prepared for the amount of pain. The doctor went in through my rib cage, collapsed my lung and cut a portion out…..can we say O-U-C-H?  Hell Yeah!!!!

So I’ve taken Prednisone before, but not near this dosage.

The first side effect I noticed was lack of sleep. I was up at all hours of the day and night, go go go constantly.  I lost weight immediately.  And my house was spotless.  I got projects done that I had been procrastinating for months.

Then my appetite skyrocketed and everything smelled and tasted fantastic.  I’ve never been a lover of fish, but I actually craved fish for the first 6 months. Salmon, catfish, talapia…man oh man, I had to have it about once a week.  I more than doubled my food intake daily, but because of the strict diet, the foods were fresh fruits, vegetables and grilled, baked or boiled meats so I steadily lost weight.

Also my mood changed.  I’ve always been abrupt and in your face about my opinions, but the steriods made me angry, frustrated, impatient and snappy.  My boss told me one day that he wasn’t taking my mood personally and it made me examine my mood and temperament a little closer.  One minute I’d be yelling and the next sobbing and apologizing profusely for my behavior. As a matter of fact, I spent a lot of lonely nights sobbing like a child in my jacuzzi tub. My emotions were all over the place.

My skin changed texture. I’m of a paler persuasion anyway, but I actually lost almost all of the melatonin in my skin it seemed. Probably an exaggeration, but I could give a vampire a run for its money.  Pale is the new white.  I began to bruise very easily and my skin would scratch and bleed with little friction. Sometimes, I didn’t even know where I got the bruise or scratch. And part of the reason I didn’t know where I had got them is because I couldn’t feel when they occured. To some degree, I lost sensory perception in my skin.  And when I did get a boo boo, it would take weeks if not a month or more to heal.

My hair, which is straight as a board naturally, turned curly, dry and very brittle. At first it got a little thicker, then it began to fall out entirely. I’d bathe and globs of it would come out in the shower and then the brush. It was heartbreaking. Of course, Dr. Asshole informed me that hair loss is NOT a side effect of Pred usage.  Well buddy re-write the damned side effects documents, because it is now.

My bathroom habits changed too. One week I was constipated. The very next week, diarrhea.

And DO NOT take Pred and Lasix together unless you absolutely have to. OMG.  Let’s talk about  muscle cramps.  My feet, legs, and back would spasm so bad, I’d jump out of bed and dance around trying to get the pain to ease off.  I swear there is a YouTube video of me out there somewhere doing some sort of Caveman dance in the frozen food aisle in Wal Mart.  I literally threw my shoes off and walked around barefoot on the cold floor.

Then another interesting side effect hit me.  Literally.  When I stand…. my blood pressure bottoms out. It happens almost every single time, so we’re used to it, but it scares the HELL out of family, friends and co-workers if they have never seen it before.  What happens is I stand, then the whole world goes black because I go blind for about a minute. I get vertigo. I don’t know which way is up or down, so I am grasping for anything in the vicinity that will hold me up until it passes. Then I go almost deaf because my blood pressure is so LOUD, its the only thing I can hear in my ears.  I get flushed in the face, often turning beet red, sweat, and shake like I have Parkinson’s.  It’s terrifying to say the least. Sometimes, it’s so bad I can’t form words or thoughts until it eases off.

Yeppers, I scared the hell out of Dr. Asshole one day.  Him and his nurse freaked out and rushed over to me, taking my pulse, trying to talk to me. I had to tell him to shut up for a minute. All the while, Terry took my purse, stood behind me so I wouldn’t fall while I had a death grip on the door frame. I was trying to tell the doc and the nurse that this is normal, but they didn’t seemed to hear me. So  Terry told them to wait a minute and it would pass, that I do this a couple of dozen times a day.

The Pred caused some other adverse conditions too. I now have Osteopenia and Osteoarthritis. I have bad muscle spasms in my lower back. Bi-Lateral Flank pain or the “Camel Hump” is what I call it. It swells sometimes and it hurts.  My girlfriend Leslie makes soaps and creams and all sorts of all-natural products and she gave me this salve with peppermint and other herbs and spices in it.  It works great.  I call it my “Butt Cream.”

It’s funny. In the beginning, all I had was some swelling.  In the end, I got more side effects from the medications, that I had originally with the disease. How is that possible? And how is that possibly good?  That old saying that the treatment will kill you before the disease does…there might be some truth to that after all, but tell me…. what other options are there?