Oh, what the heck. I don’t always feel like little Ms. Sunshine and have my down times just like anyone with chronic pain. I can’t be the only one who gets fed up, disgusted, and totally exhausted with all this nonsense. Even cheerleaders get fatigued, especially the peppy ones. Today I don’t want to pep you up, mentally jump up and down or be positive. I know by the end of this rant I will be sick of myself, my body and the world but for now, let’s have a pity party, a moaning fest and inform the “regular” folks how lousy this way of life can be. The word pity party is a bit over used so let’s call it something new, not a pity party but a pity ball.
My husband, Jim has been out of town for the last five days and is thankfully, coming home tonight. I have been more ill than usual recovering from a bladder infection and a horrendous biopsy of my thyroid. It was hideous because I got stuck in the neck with a needle nineteen times, partially with lidocaine and partially as they dug around for samples from four sites ordered by the endocrinologist and the oncologist. Remind me later, Lord, to whine about that. I have far too many “ologists” in my life. Back to the biopsy, it was severely uncomfortable from the sticking, yes but also the position I had to be in for them to reach the gland. I had to have my neck and head far back onto two rolled towels. I don’t bend that way any longer. I haven’t been to a beauty shop in 25 years because of the bending back for the shampooing. I am always extremely dry mouthed due to the Sjogren’s syndrome and this procedure was in it’s second hour as they did it under guided imagery. Fortunately, a very kind pathologist was also in the room, checking the needle results onto slides as they were being drawn. I started to have trouble swallowing. I knew I had to and did what I could until I simply couldn’t. I had to stop the procedure sit up and had a such a punch to my chest and waved my arms and panicked. I mouthed “WATER” and they ran to fetch a paper cup. Everyone panicked, especially me as I fought and could finally swallow. Slowly, I felt the ability to swallow with the cold water. My overly dry esophagus has collapsed or the sides had met and I had what is called an esophageal spasm. Let me testify, they aren’t pretty.
The good news, thus far, is the pathologist in the procedure and made trips to the lab, said she saw no cancer cells. All she could find was a colloid substance which would be consistent with Sjogen’s disease and the other rheumatoid disease I have. Good news indeed, for now. At the end of three hours, I came home, collapsed as my neck looked like a large dog had attacked me. I was purple from my chin to my chest. Everything hurt to swallow and even the smallest pills took time, tears and courage. That all happened two weeks before Jim left. We all know bladder infections in older folks can be serious, I was still sore in the ribcage and neck but I was on an antibiotic and I was gaining strength each day. I wanted and needed my husband to go on this trip. We had been planning for him to represent both of us at our grandson’s wedding in Virginia. Jim had a new suit and the whole outfit including a rose tie I forced onto him. This five-day trip was a chance for him to see Washington DC for a couple of days before the wedding and to be with our daughter’s family who had gone ahead to DC. He would see all of our grands back there and get caught up, for both of us. I had never planned to go. I can’t travel any longer. He had doubts up until the morning he left but I was better, though weak. I had the phone number of a good friend who is also a physician. George and I would be fine. I knew the Lord would give me strength and safety. He has certainly done both of those, many times each day.
I must share with you how funny my husband can be. My sodium level has been dangerously low and my internist told me to stop drinking water for a couple of days and only drink Pedialyte or Gatorade. I hate them both. I practically live on seltzer water and love my Soda Stream machine. No seltzer? Well, being the good nursie I am, I behaved and started to drink the dreaded vitamin/electrolyte drinks. Jim went shopping to load me up, so to speak, while he was to be gone. He came home with 14 bottles of Pedialyte, mixed flavors and six, 8-paks of Gatorade. Apparently, there is more in the basement. I haven’t had to check. I am a small woman. I have a small bladder. Then he ran all over town getting me the juice I drink, any meds I needed, etc. He slept for 3 hours and left early the next day to catch a 7AM flight out of Portland that got cancelled and he sat at the airport until 9:45.
Apparently, all has gone well. He and my family who is with him have seen practically everything in DC and the wedding was beautiful even though the photographer didn’t show up and it rained. My sweet daughter called me during the reception and asked me if I wanted to talk to the groom, my grandson. I just couldn’t because even talking to her I was crying. Once again, disease and pain have robbed me of a huge part of my family life. I am already compiling some of his baby pictures for his new bride and am writing a long letter to them. I am and have been for a long time, the absent Nana. Tomorrow my life will go back to what it has been for many years, some sweet, some salty; much joy, much pain.
EACH DAY BEGINS THE SAME AS YOU LONG TO GO BACK TO THE YOU WHO WAS ASLEEP.
I know you understand this feeling. Some mornings when you awaken, this warm rush of disappointment comes over you. I know this because it’s always happening to me. I think it’s because, in our dreams, we can do all things. It’s like a bucket of ice water thrown at us when we realize it hurts to move but we really have to get to the bathroom. I know we each have our own routine. For me it’s a glass of seltzer water, my handful of morning pills which I have in a dispenser all counted out at the bedside for the whole week. They are followed by a chaser of Strawberry Ensure to pad the pills. Little George, my Yorkie gives me that starving wolf look which I’m sure you dog owners all recognize. I tell him I need the calcium but he is unmoved and gets to lick the cap. I limp into the bathroom, rinse off my face, try not to look at the wretched woman in the mirror and crawl back into the warm bed. Some days I cry but most days I lie there and watch the news and wait while the pills take effect. If I need a pain pill, I take it.
Since I know my husband is downstairs reading or watching the news, I know George will then go to his bed downstairs and nap. When ready, I carefully, cautiously glide down the stairs carefully clutching the rail and often grunting with each step. It’s definitely not the glide of Scarlett O’Hara with red velvet robe flowing.
I turn on the electric tea kettle or load our Keurig with a fresh pod of coffee. Tea or café latte with lots of hot milk and I get a reprieve as I decide what to do, checking any notes I’ve written to myself the night before and only hope I can read it as I wrote it, in the darkness. My husband and I chat over the news and I strive to be pleasant. The poor man deserves it.
THIS IS NOT A WAR; IT’S MY LIFE.
It certainly feels like a war. We battle our aching bodies, our depressed minds, our changes in lifestyle just to survive each day. It often feels like my body is out to kill me. Something is definitely trying to take over “my territory.” Doesn’t that make it a war? Yet, I can’t believe it’s a war because the enemy is within. The same forces that have changed my body and my life co-exist in me beside the forces that will help me win today’s battle. You see? There are battles, there are victims, there is suffering; I guess that’s why it feels like a war.
At the pity ball we will bitch, groan, wallow, swear and throw things. You have to throw things because it feels so good. The rule is to remember you have to clean up the mess and replace any and all broken items. That kind of limits your choices. We could write our symptoms on a board and throw globs of mud, clay or jello at them. Would it help? Maybe not but it would be less dangerous than throwing them at the doctor. I suspect we all have our own way of letting loose with our emotions and discomfort. I curse a bit more than I used to and am definitely more outspoken. I know…shocker. Don’t you find you just don’t have time for the niceties? I really pity the solicitors who call. I can be very nasty to them. There’s this one credit card company who has been calling me for ten years telling me this is our last chance to lower our interest rate. It’s one of those annoying recorded calls. Some days I don’t even want to talk to a real person, least of all a recording! We now have new phones with a built-in blocker button. I love it. Okay, let’s see, what else is terribly annoying when you feel lousy? One that comes to mind is those free stickers everyone in the world sends you with your name and address on them. They can’t go through the shredder so that means cutting them up by hand. When your hands already hurt, this is not a good thing. They might go down the garbage disposal. I haven’t tried that.
YOU HAVE TO BE CIVIL TO THE DOCTOR OR HE/SHE WON’T SEE YOU AGAIN.
It is often aggravating to go to the doctor. I have found mine seldom do anything life-changing for me and when they want you to fill out that blasted pain scale, well, watch out. It’s totally subjective, gives medical personnel a reason to save time and not really talk to you. It doesn’t really evaluate your pain yet when you try to explain what you are experiencing to some physicians, they get this bored expression on their faces and I find that a real turn-off. It’s so irritating you just want to say, “If I were to come over there and grab you in a vital extension of your body, would you listen to me then?” At least that doctor would gain a new perspective about pain. You’d probably have to check that one off the list as a “do not return to that particular doctor.”
You see, it pays to have a rich fantasy life when you go to some doctors. Oh my goodness, the things you can think; the images you can conger up. As long as we’re bitchin’, how about the doctors who are focused on the computer and not looking at you? I know, they get home to dinner sooner that way but it does little for the patient/doctor relationship? We could take a recorded message in and play it. There’s a thought…think I’ll record that irritating credit card company and play that for the next doctor I see who doesn’t see me. How about a cardboard cut out of myself, also?
I KNEW THIS WOULD HAPPEN: I AM SO SICK OF ALL THIS MOANING I CAN’T STAND IT ANYMORE.
You see what I mean? I can only go to the pity ball for a limited amount of time. I have a good time. I cry when I’m there. I dance through my problems as well as I can. I carry on something fierce but I become someone I don’t like very much. I guess, for most of us, it’s that way. A pity ball is a necessary and almost pleasurable place to visit but you can’t live there.
PITY BALLS ARE NOT CONDUCIVE TO LIFE.
Too much partying can lead to real burn out. Too much of it robs our bodies, our lives and our souls of all those properties we need to make it through this tortured world we have been given. There are times when we have to cover our eyes, when life is like a violent scene in a movie and we must refuse to encourage the monster that lives within us. A pity ball is briefly enjoyable but it is only a release, an opening of a pressure valve to let off all that steam that accrues within us. I could not make it through this lifestyle without faith in a living God. I know, without doubt, there is a force of great love who watches over me but like any other human, I have my pity ball days.
Eventually we have to get back to the cleanup of life. We have to pick up the refuse of our lives, keep the helpful parts and throw out the rest. We have to rebuild daily because the war that’s not a war occurs every day.
HOW DO WE RECOVER FROM THE PITY BALL?
A good sense of humor is a must; otherwise we are just too morose to stand ourselves. We have to remember pleasure is healing, laughter is wonderful medicine and beauty, oh my, it has miraculous powers. Beauty if all around us, in our homes, out the window, in the air, the trees…all around.
Another healing technique we often forget is the power of forgiveness. We have to forgive our illness for what it’s done to us. You can’t hold a grudge forever. Well, actually, you can but it does terrible things to you. It means your enemy, your disease wins. It makes you ugly. It gobbles up too much of your life force and that isn’t good.
We also have to forgive all those seemingly “normal” people walking around out there. We often get so wrapped up in our own battle we forget the physical pain battle is not the only one in this life. No one is normal. That young woman you see walking past your house is worried how she is going to pay her rent or wonders why her boyfriend hit her last night. The UPS guy who just dropped off a package has an autistic child. The repairman who is working on your washing machine has a wife who is fighting breast cancer. The doctor is worried about his/her practice with all the changes occurring in healthcare.
Okay, time to leave the ball and jump back into life. You and I are just one piece of this puzzle called life. Do remember, you don’t have to be at a ball to dance.