September 25 2017

Short Post/Update

Despite all of the bad days, the near constant pain, the undistinguishable and the distingishable symptoms, I have good days too. Usually when a good day comes my way I do not question it; instead I dive head first into a project or an activity, knowing full well that my carefully stacked wellness is a contingent life-like game of Jenga. Each exertion is done cognizant of the possibility that my good mood can shift. It is important for me to enjoy the good days but to do so with an open mind.

After a pain-filled week we decided to take the boys to the fair again. Somehow the fact that it was a Saturday and the final weekend didn’t occur to me. The whole day was a little frustrating. I woke up moody, but mostly in good spirits. I was experincing eye pain, but I wanted to give the boys some laughter and good memories.
When we arrived, the parking area was overflowing. The lines were incorrigable and there were so many people my anxiety went through the roof…especially when I pushed the stroller to the ticket window and looked back to see Jackson playing with someone’s discarded cigarette pack filled with the butts.
The bathroom lines were insane and I was way too warm, depsite the 60-degree weather. However, despite all of this, it was worth it. Any day that I can spend with my family is a good day. Standing with Jon’s arm around me as we watched the boys “carnival ride” with giant smiles was a sight well worth the aforementioned frustration. 

It is hard to have an invisible illness, to constantly have to explain why I look normal on the outside while complaining of anything but normal insides. It is a feeling carried by isolation and discontent. 

In other news, according to my recent blood work my liver enzymes are still high but my red cell count was low, even by my historic standards. I asked my infusion nurse why she wasn’t concerned and she stated that I am anemic. I have been iron anemic for as long as I can remember, my point was that I was complaining of blood loss and then my results came back lower than MY low. The nurse suggested a multi-vitamin with iron. I have no idea if I am supposed to notice a difference, but I have been taking it for a week now. I have also drastically decreased my caffeine intake. Something I am both happy about and deeply saddened by. With my schedule I basically survive on caffeine and inappropriate humor. Nobody has died in the last week but if I continue to wean myself off of caffeine, I make no promises of future body counts. 

September 20 2017

Proof is in the Pudding

The proof is in the pudding. Did you know that proverb actually has a second part to it? William Camden said “All the proof of a pudding is in the eating.” The full quote changes the meaning, but I like the original. To relate, all the proof of an invisible illness is in the experiencing.
Since you cannot experience this for yourself (not that I would wish that on anyone), I am going to paint you a picture. Bear with me if you can; I am about to show my underbelly.
Saturday I woke up with a headache. It happens; it sucks, but I’ve learned ways to handle it and move on. This headache though wasn’t going away. If anything, all of my attempts to alleviate the pain seemed to make it worse. It didn’t seem influenced by sound or light, it just hurt. A radiating pain of the searingly hot variety. I tried to hang but I was snappy and agitated. My brother took the kids so I could try and nap it off. Mind you, internally I was wondering if it had anything to do with my recent blood test/results. Then again, my internal mode is always set to “over-anxious anxiety.”
By the late evening I knew I needed to get up and handle my adult life, but what I did instead was move all of my stuff (Hydro Flask, blanket, Netflix DVD, and phone) from the bedroom to the downstairs couch. Which–for the record–I totally counted as a win. I was up, I was moving, and I was in relative proximity to my brood. Then my stomach started rolling. I felt feverish and the headache was still unrelenting. In the span of a few minutes, my temperature soared, as did my anxiety.
I climbed the stairs and managed to get to the toilet. However, all I could do was crouch down and cry; deep, can’t-breathe-screams-of-agony intermixed with wails of true debilitating despair. I had no idea what my intent was when I got up, but I was driven to move toward the bedroom and when I got there I collapsed on the bed, still screaming and crying. In the background I could hear the boys asking what was wrong with mommy.
I see Jon start to transition from no idea what is going on to action mode. He immediately starts asking me what is wrong, what hurts, and then telling me to take deep breaths. At this point, my entire body was on fire and my head was hurting so bad I was literally wishing it would just explode. My breaths were coming more aggressively making it harder for me to breathe. “Deep breath, deep breath, deep breath,” Jon just kept repeating it over and over, telling me I needed to breathe in and take slow breaths out.
It took a while. The snot was pouring down my face and mixing with my tears making it hard to see, but eventually Jon calmed me enough and I was able to explain that it hurt to breathe, my head was pounding and I couldn’t regulate my temperature.
Jon had me strip down and get into the purposefully freezing cold water of the shower. I was still in pain, probably screaming (and just as likely crying), so I hunkered down on all fours and just shook as the water beat down on my skin. At first the water was nice but then the coldness seeped into my bones, making me shiver in new ways. I tried heating the water but Jon turned it back to cold and told me to drink the cup of Pedialyte. My hair was sopping wet, my face was covered in snot, tears, and drool, and I was doing everything in my power to handle the shock my system was experiencing. I can’t tell you how short or long the “shower” lasted, but I can tell you it felt like an eternity. Jon helped me out of the tub, wrapped me in a towel and held me while I cried into his chest. He whispered, “I won’t let anything happen to you.” I know it sounds crazy, but I believed him. I knew, even while everything was happening, that he truly had only my best interest at heart. He is the one person in the world that has seen the deeply scarred and damaged parts of my soul and still wants to help heal the ugly.
You might think that’s the end of my episode; I mean really, how much can one person handle? But no. After I was dried off, Jon helped get me into bed. He said he shocked my system and I needed to let my core temperature return to normal naturally or all of that would have been for nothing, so I sipped at more Pedialyte (nasty-awful-salty-sweet drink) and tried to keep my shivering to a minimum. (Difficult to do with wet hair, no clothes and a fan on, but I was doing my best to let my body reset.) The headache was thumping terribly, but I was just happy to have stopped crying. Jon was dabbing at my head with a wet washcloth and mother-henning me in the best way possible.
Extreme dehydration sucks.
After my temp started to come back up, and the sips of water seemed to go down smoother, Jon laid down to sleep. Did I mention I hadn’t eaten much since dinner Friday night? Because, other than a few rolls, I don’t know that I ate anything. Which is only truly relevant when I talk about the puking. Oh my gosh, the puking. Basically, it was one extreme to the next, all the while my head was pounding away. It seemed the more I drank, the more I puked. If I took slow sips I would get too impatient with pain and worry and would try to over compensate.
All night, I sipped, I oiled, I medicated, and I even applied Icy-Hot. By morning, I knew Sunday would be a lost day and by that night I knew I would need to call out of work (something I try never to do). I think the part I am struggling with the most is that the kids had to witness the meltdown. I know they are young but I want them to stay young, stay innocent and full of life, spirit, and imagination. I don’t want my illness or my actions to take away from them the innocence of what childhood should be.
Can you relate? Can you see the image of what this illness is? If so, I am sorry.

September 13 2017

Pin Cushion Kayla

“How do you feel about this?”
Seems like an easy enough question, right? Maybe for some, but not for me. I have no idea how I feel–about anything–ever. In fact, I believe you would need to dig up Freud himself to figure out my idiosyncrasies. By now you’re probably wondering, what on earth I am talking about.
Friday afternoon I started having pain. Not the collapse-onto-the-floor-in-fetal-position pain, but the “maybe if I snap a rubber band or hunch slightly no one will notice my Kujo grimace” pain. In typical working-mother fashion, I pushed through. It was a Friday after all and I had the whole weekend to deal with it. The pain progressed most of the afternoon and far enough into the evening that I mentioned it (in a rather whiny form, if I do say so) to Jon. He said the right things and hugged me long enough that I felt infused with the ability to endure.
Saturday night, after a relatively calm day without the pain from the prior evening, I went to the bathroom. Blood. Lots of it. Enough that I asked Jon to come look. (For those who don’t know, Jon–to put it mildly–is a weak-stomached wimp when it comes to blood.) He asked if I wanted to go to urgent care. I knew he had to be up at 3 AM for work, but I also knew that if I wanted to go, If I wanted to load into the car, drive the hour-plus commute to the clinic, wait in the germy cesspool, get poked, prodded, and left wanting, he would.
While you are probably wondering why his work schedule crossed my mind… it was less of a factor and more of an excuse. Because if you need medical attention, you need medical attention, am I right? Don’t get me wrong, seeing the blood…seeing how much more there was than normal shook me. It made me break down into tears and clutch Jon while I mentally reverted back to my 13-year-old mindset. More then anything though, it made me angry. As I have mentioned before, one of the hardest parts to this illness isn’t the pain, it’s the mental/emotional stuff. I constantly feel like I need to prove myself–or rather my sickness–to others. To my doctors, to my co-workers, and even to my family.
This disease is one never-ending loop of Aesop’s fable, “The Boy Who Cried Wolf.” Sadly, there really isn’t anything I can do about it either; not any more than I already am. I know being upset about the things I am going through serves no purpose, but I also know that bad things happen when I keep all of my feelings inside. I want to be able to express my fears and emotions without having to look away or without crying.
Sunday had me in bed all day with a headache of migraine proportions, so I decided to send a portal to my Digestive Health Clinic asking for advice. Can you guess what they want? More blood work! Ever the pin cushion, I will be heading to the lab tomorrow. Side note, I wonder how much blood I have given over the years… heck over this year? I don’t really know what they are looking for, but hopefully it will result in some sort of light-bulb moment that will help with my on-again/off-again flairs. I could live without having another day like today.
When I told Jon what the clinic suggested he asked how I felt about it. Since life isn’t multiple choice, I guess I feel unsteady. I want there to be something wrong–even if it’s the smallest sliver of something–so I can feel validated; so I can scoff and groan about the time and energy I wasted. I also want this to be a flair, but I hate, HATE that as an answer. It isn’t acceptable anymore.
Wish me luck.

September 3 2017

Traffic Light

Much to my own aversion to the new meds, I started taking them Sunday night. That first night was extremely uncomfortable. A few minutes after taking the pill, I felt cumbersome; unyieldingly cemented in place. My mind was whirring away and I kept telling myself to move, to get up…but my body wouldn’t. I sat stagnant, swathed in a mental game of unrelenting resistance. I felt my eyelids grow heavy and still I forced myself to stay awake. I was playing an internal game of tennis; I wanted the meds to fail, didn’t I? Deep down I know life is a game of chess, not checkers. I can’t go into this disease looking for the easy answer.
It has been documented that getting too much sleep is almost as bad as not getting enough sleep. I do not know how accurate that is, but I definitely believe it after this week. I was taking the codeine as the doctor suggested, and even with my internal struggle against it, I have been getting a little over seven hours of sleep a night. Seven hours for me is almost unheard of; I have been living off of five, maybe six hours of broken sleep for years. Even with all of the extra sleep, I have felt more exhausted then ever.
Around the third day I started feeling off. Not bad-day off, but the-early-stages-of-depression off. I didn’t want to talk to anyone. Not family, not friends, not even co-workers. I was blasting whiny music insanely loud and still not hearing the words. I truly did not have a feeling or care in the world. It wasn’t until I found myself sitting in the dark atop our stairs with headphones on that I realized I might need to start paying attention.
I have had my varying mood swings over the years to which Jon is attuned…but this time even he was worried. Well, fake it until you make it, right? It took some effort and a long conversation with Jon, but I think I have finally crested the hill. I am hoping that it’ll be smooth sailing from here on out; especially since the meds seem to be helping. Sigh!
 
This pill struggle has reminded me of some stuff that I haven’t thought of in years. When I was a kid I had this fictitious¬†boyfriend named Harry. He was the heir to the Bayer Aspirin throne. Yes, I really planned out my life with Harry Bayer-Aspirin.
I believed, as Cassandra Clare wrote, “to love was to destroy.”
I have since found the error in my adolescent way of thinking, but not without my own struggles. I lived in a world of books and fantasy. I imagined Harry would come to me, armed with bags of aspirin and offer to fix me. In those days, I had no clue what was wrong with me; no diagnosis, not even people who believed me. The doctors couldn’t figure it out and my parents wanted me to attend therapy. I felt alone. Despite my feelings, I was still young enough to believe in the magic of the world.
Before diagnosis I had this boldness about me, I felt like the world owed me something. Imagine that bucket of cold water to my ideals when the doctors finally figured it out.
A diagnosis changes nothing while changing everything at the same time.
In fact, it will change everything about you, if you let it. I fell prey to the change for years, but I am finally starting to sort it all out.
 
One of the times I was in the hospital I had a room with a view of a seemingly forgotten street. It was early March so the air was chilly and left visible plumes of white frosted puffs. In the center of my window frame sat a street light. For days I watched this abandoned road light turn from yellow, to red, to green. It was the only constant thought in my head; it was my first taste of metamorphosis. I go back to this memory from time to time, often when I’m scared or frustrated. The light is a symbol: even without cars, the light keeps changing. The world keeps going, and I should, too.