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. 

August 6 2017

Wolf in Sheep's Clothing

I have never been some starry-eyed waif waiting to be saved. In fact, I pride myself on being a fiercely independent gale-force wind. Maybe that’s reaching, but I definitely have enough wind in my sails to slam a door closed. When a problem presents itself that I truly sense I am unable to contain on my own, I feel like a failure of epic proportions.
Insurance: a true wolf in sheep’s clothing.
In life we all have dreams; it’s one of the big things we all have in common. Our blood hums with possibility, determination, and grit. “Strive for greatness,” “Never give up,” and “What the mind can conceive, it can achieve” are all platitudes people tell you to ‘encourage’ you to keep on keeping on. Well, my dreams have changed a lot over the years. In wild and drastic measures, no less. My dream for the last almost five years? To live long enough to watch my boys graduate. I have other dreams, too, of course; I want to see them fall in love, find passion, and be whoever they are in their bones. I want to be around for them, I want to be healthy, and capable.
I am saying all of this because of a letter I received from my insurance company. An unprompted letter of rejection regarding my current medicine, Remicade. (Now, before I go further I should mention, I think the letter has been handled. You can mark me down as skeptical, but I have to trust that it’ll all work out.)

Be that as it may, I went into a full-on panic of epic proportions. This cold sweat engulfed me like a surfer in the ocean. I could even taste the salt but that might have been my own tears. All I kept thinking about was why? Is the Board in charge of making decisions regarding my health going to be in the stands of whatever sport my children inevitably play? Are they going to take up a collection plate on Sunday or work a 9-5 to pay my bills? Are they willing to be available for the skinned knees, lost action figures, and the myriad of other things that go along with being a parent? Or what about the duties of running a household: laundry, dishes, and budgeting? What about Jon? Are they going to do all of the things that I do, when I lose the ability to do them because they aren’t willing to pay for the medication that keeps me functioning?
I also kept thinking about what it would mean to lose the insurance coverage. I am fortunate to have found a man willing to stand beside me no matter the cost. He would pay out of pocket without blinking. He would try and right the wrong in whatever way he could. He would be willing… but I wouldn’t. How could I knowingly throw a rock into our family pond and sit idly by while the ripples messed with everyone I love and care about?
I don’t know a term for what I feel; I would describe it as the chronically ill guilt, I guess. I feel guilty every waking moment. Guilty that I don’t do enough, say enough, and work enough, or know enough. Guilt that I cost financially and emotionally, sometimes more than we have. I am only human after all.
Some nights I lay awake watching the fan spin above me and listen to Jon breathe. I know I am one of the lucky ones. I have so much in life to be thankful for and I am. Yet, that never stops the anxiety from creeping in; the dread of what tomorrow might bring.
All of this has made me question my goals in life. I thought I had it all figured out, I thought I went to school to follow a passion, but now I wonder if maybe I should go back. I think I could do some real good for people like me, maybe grant writing or something within a non-profit. Anything to not feel so powerless.
May 28 2017

Flair/Post Flair

Yesterday I had every intention of writing all about my run-in with a stranger named Michael. But, as all of us auto-immune people know, one second life is good: you find yourself running around outside engaging in silly string fights with your boys, and the next second you are sweating profusely, stripped down to your underwear, hovering over the toilet.
I started to get a headache, something that, unfortunately, is not uncommon. I decided to take a rest and drink some water. Then the headache progressed into full tension. Then the sweating happened. It was like I couldn’t regulate. I was hot, way too hot. I opened windows, I drank water, I stripped down to nearly nothing, and it wasn’t helping. Then the shaking started.
I was overcome with dizziness and nausea. The fear in the moment was plenty: Is it the cold the boys had? Is it because I missed my prednisone dose yesterday? Is it the inflammation in my colon? Is it the new meds? or is it the tapering I have been doing?
I found myself wondering what to do. If I go to the ER and it is nothing, I will have scared the boys, racked up a medical bill I don’t need, and wasted an already uncomfortable day in a more uncomfortable and scary environment. On the flipside, Crohn’s can progress rapidly and unfairly, can I really do nothing?!
I have a tendency to underplay how I feel in these moments; I never want to burden anyone else. Jon had worked all day and is recovering from whatever new ailment the boys brought home. Going to the ER or Urgent Care would require him to deal with me when I could tell he barely wanted to handle himself. So I just took a bath and prayed the pain away. Thankfully, after throwing up, cooling off, and a dinner of crackers and water, I was able to get some sleep.
The mornings after a flair have me reeling. I want to make memories and to try and erase the horrible day(s) before. So today, in true after-flair fashion, I dressed the boys and loaded them into the car for a day of fun and fat.
We started off at my favorite donut place, cruised the town with our new shades, picked up a pizza, and headed to the park. Jon took his lunch break and met us. It was a beautiful day in the Pacific Northwest, and the boys had a lot of energy to expel. I tend to take a lot of photos on these days. I never want to remember the days laid up in bed, I want to remember the boys laughing, feel the wind on my face, and remember the smell of a fresh brewed Americano.
PS, if you are wondering about Michael…there was a roll-over accident less than a mile from my house and traffic was being turned around and rerouted. (I commute an hour each way.) I had worked all day Friday and was anxious to get home, see the boys, and put my feet up. As the car in front of me was flipping around I smiled to the driver and asked if he knew if the next community over had a way around. He smiled back and then told me to meet him at the next community, he would let me use his gate code to get through.
I don’t know a better word for community; basically, the place next door is miles of sprawling woods with houses. I live in the middle of nowhere; I’m pretty sure the directions say to go until you think you are lost and then go another 10 miles. Anyway, it took me a minute to get to the next gate, between the chaos of people being turned around and the traffic from the other direction. There stood Michael, out of his car and by the gate ready to punch in his code.
As I got close he waved and I asked if he knew the way to the back gate. He told me to go through and wait for him, he would guide me. I didn’t realize how truly selfless this act was, until I started following him. Had I tried to navigate myself, I would still be lost… in an unknown area with no cell service.
Michael, I have never met you before but I appreciate you more than words. I am grateful to not have been stuck for the two-plus hours they quoted before the road was opened back up. Your small act of kindness was a HUGE blessing for me.
May 13 2017

An open letter to my son for his fourth birthday

Little man,
For months I convinced myself I was pregnant. The doctors explained the unlikelihood of my ever having kids, but every month…I was so sure. Every negative test felt like a personal attack, like I was being punished for wanting a kid knowing my condition can be genetic.
Then it happened. I cannot explain why it was different, I just knew. Your dad had that look in his eye, the one he gets when he knows how badly the fallout will be when I get hurt. Your daddy though, he’s a patient and supportive man. He just smiled along as I talked about you; about the possibility of our life with you. Hearing your heartbeat, it truly was the most beautiful sound I had ever heard.
I won’t lie to you, pregnancy was as terrifying as it was magical. I was determined to finish school and make a good life for you which kept me busy. The doctors’ appointments stacked up, the usual and the specialists. Then I developed SUA (Single Umbilical Artery) and that required extra fetal monitoring. Between trying to contribute financially and still figure out who I was, I cried a lot. I spent a lot of time wondering if I was a terrible person for wanting you so badly, when you could end up like me.
I want you to know, that if that day should ever come, there is no one that will fight harder for you, with you, than me. I am now and forever your biggest cheerleader.
You turn four tomorrow buddy, and I couldn’t be any prouder of you. You are smart, so smart and that makes it harder for mommy to hide things from you. I want you to know how loved and valued you are. Sometimes mommy hurts, sometimes mommy cries, sometimes mommy gets mad and anxious about things that have nothing to do with you, and I am sorry for that. Sometimes mommy will have to sit things out, or be away from you for a few nights. In these moments I want you to remember that you are the breath in my lungs and the blood in my veins. You are the reason I fight so hard. The reason I have survived.
Falling in love with your dad was like finding water in the desert, but falling in love with you was like finding myself. Finding where I fit, where I belong. Thank you for being my son. For being a loving and caring big brother, and for making your daddy and I so proud.
Happy Birthday, son.
Jack & I hospital
May 3 2017

The award goes to…

Parenting is a hard-enough obstacle for anyone, let alone someone facing an incurable chronic illness. The course is filled with roller-coaster highs and limbo lows. One second you think you have it all figured out, the next you are sitting against the bathroom door crying as little tiny hands reach underneath for you. I find it hard enough to take care of myself most days, so adding in two wily full-of-energy toddler boys makes for some interesting and stressful days.
Take the other night for instance, when the whole house was suffering from a horrible stomach flu. Jon was in the other room trying to sleep, it was way past the boys’ bedtime, I felt awful and just wanted to feed them some dinner. Jackson was being a typical boisterous toddler, and me…well I just sort of snapped. He was asking to go visit grandma, something he had been asking repeatedly since he came home from her house. I knew, even as the words were coming out of my mouth, that I shouldn’t say anything; knew that I should breathe deep and twist the sleeve of my shirt.  But did I? No. Off I went. “There will be no visiting grandma, no Star Wars, no sunshine, no rainbows, no music, no laughter, no joy, no candy, just rain, rain, hard bread, and your crib.” My face fell, and the guilt immediately washed over me. Jackson on the other hand, just looked at me, and I kid you not, blew a raspberry. Yeah, that happened.
Between my pain-filled frustrations, the insane hours I clock at work (factoring in commute) and the non-organic powder-packet dinners, I will not be winning any parent-of-the-year awards. Ever. But hey, at least America is known for giving out participation awards!