Insidious Awful Worthless Germs

Seriously unbelievable! I am having the hardest time feeling better. Is it my WBCs that are not able to fight my fight for me? Is it something more insidious, deeper in my core that is really SICK sick. Sick beyond the “normal” sick? Sure, I’ve been sick since I’ve had Myeloma, but I can’t recall the awfulness I feel this time. I’ve always recovered faster. This bug is sucking the life out of me. Taking forever to leave. I’m going to name it “THE CHRONIC FEVER FATIGUE FOREVER FLU”!

You know how in movies and books you’re taken back to that incipient moment of what happened. That retrospective explanation that solves the why. I just want to know Who breathed on me, Touched me, Contaminated me! When did I pick this monster up? I wish with all my wishes, that I could look through the magical back in time telescope and see where I picked this thing up. I’m so darn careful about cross contamination, it just baffles me I could get this sick.

It started with the typical achiness of a fever and just continued to get worse from there. But it wasn’t a horrible sinus or respiratory bug. It’s manifested in a super high fever for days. Yes days and days and days and days of fever. Finally yes I’ve gotten better. I’m no longer stuck at 103, 102, 101. I don’t ache as much. But I have this weird malaise. Just blah. Just no energy. No helium. Just achy all over. I find myself wanting to take my evil best friend Dexamethasone, just to see if that would make me feel better. Temporarily pump me up. Maybe this is the mystery? Maybe going off Dex has slowed my immune system to sluggish blah? I have my monthly oncology appointment on Monday, so I will ask.

In the meantime, I drag. I drag myself to do everything I try to do. I don’t have the fire I used to. What is wrong with me. One day slips into another. I feel downright yucky. I feel no purpose. Just trying to get from one day to the next, to hopefully feel better the next. I can’t get comfortable in my own skin. If Jim wasn’t so sick too, I would think this was psychological. Yes we are slowly a little better each day. Just a little, not much, just a little bit each day. His settled more in his chest then me. He’s on antibiotics, I’m not. Thankfully our chest xrays showed NO pneumonia. I am grateful. Very grateful! But I still feel awful. No pep. No motivation. One day falls into another. I question my life. My purpose. My reason here. Not feeling well makes one feel so awful. In so many ways.

I used to have so many events, goals, plans, challenges, etc to look forward to each day. Something to achieve daily and make me feel accomplished. That some-thing important that moves you forward. Some-thing that makes your body and mind feel good, productive, pleasant, happy, positive. You feel that good-tired feeling at the end of the day of doing some-thing that mattered. That, wow I can’t wait to sit and relax feeling because your body “earned it” feeling. That delicious accomplished tired feeling, after you’ve lived a normal day, and you look forward to the next day’s adventures and challenges. Not me, not now.

“Normal” people plan things. Normal people plan because they know they can do their plan. Plans are meant to be accomplished. I was planning to plan little things for my chemo break days. Little things. Drive my Bug. Groom a Horse. Take a walk in Nature. Go to lunch with friends. Maybe even try to visit my office one day. I was hoping we could begin to do a few things. Not much, just a few small fun things here and there. Now, I don’t even feel like planning. What’s the point. I don’t feel well. Even if I plan, my body won’t let me participate. I don’t want to go anywhere. I can’t get comfortable. My body hurts. No point in planning…

My days seem so meaningless now. Just existing. Just trying to get to something that makes me feel ok. Walk outside. No, it doesn’t feel good like it used to. Pet the doggies. No, that’s an effort. Pet the horses. No, that’s an effort too. Sounds hurt my ears. Things give me headaches. Water, not refreshing. Juice, doesn’t taste good. Toast, makes me feel stuffed. Soup, yuk, not satisfying. Nothing appeals or satisfies. I try to go outside and sit in the sun. It stings. The neighbor’s gardener is blowing incessantly. It hurts my head. Makes my chest feel heavy. I feel sabotaged. I long for that sense of luxuriating on a lounge chair, feeling the sun’s rays permeate my being, regenerating my battery. No, it doesn’t feel good today, the day before or before. My skin hurts. My body feels restless. Achy. Discontent in any position. I take my temperature. Some days it’s 99+. Some days 98+. Haven’t seen a normal 98.6 since Feb 14. I know I am better. It’s not in the 100’s. I’m grateful for that.

This is not me. Not having the energy to do. I’m the eternal optimist. I’m supposed to be seeing the glass always half full. I’ve been thinking about all this, each day for weeks. I’ve been sick for 2 weeks now. What is my life now. What is my purpose. What is this getting up, to then get to the couch. To try and accomplish a few necessary chores saps me. To then flop back on the couch. That doesn’t even feel good. My hindquarters are sore from sitting. From sleeping. NO I AM NOT DEPRESSED. This is physical. My body is not allowing me to feel good. I am so tired. I have a weird ache all over. I don’t have an appetite, but I force myself to eat and drink. It doesn’t refresh me. It doesn’t make me feel good. It weights me down.

I feel terrible writing like this. There are so many suffering on such a
larger scale than me. All over the world. There’s so much sickness and suffering. Humans and animals. Cancer patients are dying every day. I follow a lot of myeloma discussion groups online. There’s a lot of myeloma suffering out there. Myeloma is so insidious, so vicious. Treatments have stopped working suddenly for so many. Some have little hope. Treatments too invasive and organ-devastating, devour lives. Options have run out. I’ve been really sick, but at least my chemo treatments are having an impact, keeping my myeloma numbers stable. Years ago, like so many in the myeloma world, Pat Killingsworth was my first go to guy when I was diagnosed. He recently lost his battle. I, like everyone else, overwhelmed and shocked. Devastated he’s gone. He blogged for us everyday. Sharing his life, his story, his treatments, his journey. Just devastated to read what happened to him. If you have myeloma, you know Pat. If you don’t, please get to know him. His legacy will live on forever. What an amazing, insightful, intelligent man. Such a deep loss. The myeloma
community has lost a “giant” and I am whining here
about my fever flu awfulness. I am still here. He and so many others are not.

I’m sad I feel so awful. Sad for me, sad for others. I try so many things to make myself feel better. I compel myself. The weather has been spectacular here. That generally picks me up, invigorates me. My family, my animals usually invigorate me. Spring has come early. Beautiful fresh green everywhere, new colors of 2016. I want to feel good! But everything feels like a painful chore. I cancel plans made weeks ago. We just don’t feel well. It’s insidious. I don’t understand why I am sick all the time. Cancer sick. Chemo sick. Flu sick. Sick of being sick.

But I push forward. I know moving helps. I go outside. I try to do some horse chores. I’m exhausted. I hurt. I feel like I’m going to pass out. I walk in my tack room. I’m sad. I waited too long. My life is passing me by. I’m not feeling sorry for myself. I’m a realist. My body failed me. I don’t have the helium to do what I’ve dreamed of, waited too long for. The reality of being sick for over 6 years hits me. 6 years, more than 6 years, I’ve been sick. I haven’t felt good for over 6 years. Tomorrow’s another day I tell myself. I will get better. This is temporary. It has to be… It just has to be…

 My happy place ~
So many beautiful memories and miles

Can it really be? I’ve had this saddle for 35 years. 
So many happy miles. Dusty now, from lack of use…
It’s a beautiful day outside. It can’t be possible that I can feel bad much longer. It just can’t. Monday starts chemo again. I missed 2 treatments this month due to being sick. I wonder how that has affected my status. My IgA was up last labs. Did I mention that? My IgA was up more than 100 points. I need to take monthly blood tests. I can’t stand the idea of going over to the lab. So much sickness everywhere at all the clinics and hospitals. Sickness everywhere. I hate germs. I hate sickness. I don’t have patience for it. What is their purpose. I hate suffering. I don’t understand everyone’s suffering. There’s too much sickness suffering in the world… Sickness is suffocating. Ok, Enough…
Ok, so I will end with a couple funny stories. There’s always that fine line between tragedy and humor, at least in my life. Last week, at the beginning of being so sick, Alissa was here helping us out. At some point she realized a pigeon had fallen down our chimney. We have a lot of pigeons Jim feeds regularly, so they often roost on the roof, but we’ve never had one visit us inside. I think the pigeon fell down the chimney late afternoon, so we decided to leave it there over night, hoping it might flutter back up by morning. I felt so sick, but I knew I had to help the poor guy. As sick as I felt, it was funny. It made us laugh. The irony of a pigeon falling down our chimney, especially when we felt so awful was just funny. I didn’t need one more challenge. But it was funny. A wild pigeon randomly roosting (by mistake) in our fireplace. I’m not sure how in my feverish state I managed to gently grab the pigeon without much fuss, and hold on to him, but I did, and released him outside before I collapsed from laughing and physical exhaustion. 
A few days after the pigeon incident, Jim accidentally let one of the rescued baby sparrows out. For those that don’t remember I rescued and raised a single female baby sparrow in 2013 and then in 2014, three more newborn babies fell from the nest. Not my intention to have a household of sparrows, but I didn’t have a choice. Anyway, “First Birdie” gets to fly around our house periodically, as she goes right back in her cage. The “Triplets” are another story. They remain in their huge aviary, happy but way too “busy”. Well Jim accidentally let one of the females out the other day, and she’s not “trained” to fly back into her cage like “First Birdie”. Long story short, while Jim and I are feeling feverish and awful, we’re trying all kinds of gymnastics to catch the little birdie. She stays close by us and her buddies, but we can’t get her back in the aviary without letting the others out. Can you imagine the comedy. First the pigeon in the fireplace last week, now a sparrow lose in the house. Fortunately, she finally flew into our food pantry late in the evening and I secured her there, trying to figure out how I was going to actually capture her and get her back in the aviary. Looking back, as awful as I felt, it was pretty hilarious. I’m climbing around the pantry, Jim finally slipping a step stool ladder in there for me as “girl birdie” flits here and there, swooping in my face, taunting me that I can’t catch her. She finally exhausted herself and I managed to catch her behind the condiments and return her squawking and pecking to her aviary. Truly, my life is that fine line of comedy and tragedy. And that’s only 2 recent examples our crazy adventures in Myelomaville.
First Birdie trying to cheer me up ~
What a lovely view of me… NOT :( but Birdie’s very cute here!
Live happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!