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Eve's Blog: Suviving FSGS & CKD

evelyneileencawley@yahoo.com

#28 - Woe is Me?

I never dreamed I could be in so much pain. I never imagined that this kind of pain existed outside of what I've heard about childbirth. And no, just so you know I've never been through the glorious painful blessing of childbirth; therefore I cannot compare my pain to it technically. I only wish to say that this is the absolute worst pain I have ever experienced in my life. The last 16 months of my life have proven to be eye opening and revelatory in how easy my life truly has been up to now.

Although most of you have felt some sort of pain at one point or another in your lives, I think I can honestly speculate that most of you can't possibly understand physical pain like this. It's the kind of pain where you will do, say, find, try ANYTHING to ease the discomfort you are feeling. Like a junky looking for the next fix, when you are faced with this kind of pain, you will go to the ends of the earth to end that pain.

It started at 4 a.m. My bones ached. My muscles were tight and cramping. My stomach was nauseous. And to top it off, I had another headache. Headaches are almost a daily occurrence. I went back to bed around 530 a.m. and slept until about 11 a.m.  I got up. My husband and I ate lunch and I started to feel tired again around 530 p.m.  Physical pain will do that to you.....drain you, tire you to the point of mind numbing, drooling, soundless sleep. I layed down and got up about 830 p.m. in the absolute worst agony.

It felt like a cross between severe indigestion, lung collapse and open heart surgery all rolled into one. It hurt to breathe. My stomach was swollen and distended. I was nauseous and I actually vomited repeatedly. My food should have digested from lunch, but it hadn't. That's the way it goes. My stomach doesn't digest that well anymore. Once all the food was gone, the acid and bile came up. There was so much acid, you could physically see it, bubbly and tainted in the toilet. There was a rancid smell to it, mixed with a greenish texture.

I got in the tub. My sudsy savior. I run the water as hot as it would go and turned on the jets. It was so hot, my face turned beet red and I thought I might pass out, but it helped a little bit. I rocked back and forth in the tub, dry heaving. When I accepted the fact that the tub wasn't going to solve world peace or hunger or AIDS, I got out. I took two Exedrine. This is where my husband told me that it was 11 p.m. and I couldn't have anymore pills tonight. He knows that when I get like this, I will continue to swallow medication after medication in an effort to ease the pain.Find something that works. He's scared I will over dose. To be honest with you.... I don't care. In situations like that, a pain free existence is my only goal. I'll achieve it anyway I can manage.

I couldn't vomit anymore and the pain wouldn't go away so I began to pace the floors of the house. With every single step, my Himilayan cat, Chester, matched me step for step, occasionally glancing up at me, meowing. He was worried. Sometimes, if I raise my arms over my head while I walk, the pain will ease somewhat. Sometimes, I'll actually hang from the door jamb. Not tonight. As I walked, I moaned with each step, each breath, each muscular flex. At some point, the moans turned to sobs. I trudged on, silently crying, tears streaming down my face in steady rows.

CHESTERFIELD

I don't believe my husband could stand the sight of my agony any longer. He had been watching me pace the floors. He had checked on me while I was in the tub. When I'm in pain, he's in pain. He pulled up a seat and told me to sit. He then proceeded to rub my back, ribs and stomach over and over again. He applied pressure. The man must have rubbed for a full thirty minutes while I cried and cried. He eventually grew tired and quit rubbing. The man's a saint. I swear it.

SAINT TERRY

Still in pain, Chester and I continued our pacing.

Finally, sometime around 2 a.m. the pain began to ease off.  Chester had long went to the recliner to take a nap. Our other cat, Monkee, was also napping.  Terry was preoccupied with YouTube videos, but keeping one eye on me, just in case. Exhausted from the pain and exertion, I'm terrified to go back to bed in fear the pain will return. So I sit up until the wee hours of the morning, surfing Facebook, the news, passing the time until I know it's safe.

MONKEE

This routine happens as often as 4-5 nights a week and anywhere from 4-6 hours in span each time.

I've told my doctors. I've had the upper and lower GI scans. I've taken Xantac, Previcid, Prilosec, Pepto, Tums, and Pepcid. Nothing helps. I've tried hot chocolate, warm milk, lemon and honey, ice cream, bread, ginger ale, tea, ice cubes. I've exercised, relaxed, soaked in a hot tub, been massaged, walked, vomited - you name it. I've tried it.