Accidental Hiatus/Life Update

Wow! The last month has been absolutely crazy!

Some good stuff happened, some not so good stuff happened and it resulted in me abandoning the blog and WordPress in general for about a month. Oops! I’m working on some more comprehensive content but in the meantime, here’s what’s been going on to account for my absence:

1. My husband got an awesome new job! 😁 The interview process was long and stressful, but it’s a great position and he’s so happy there. The last two weeks at his previous job (call center) were grueling, but I helped him through it and now he goes off cheerfully in the morning and comes home feeling he’s put in a good day of work. It makes me so happy to see him satisfied with his work life for the first time in a long time. It’s also taken a lot of financial pressure off of us. We’re not rich by any means, but we know we can pay all our bills each month, which is obviously an enormous relief after struggling for the last few years.

Is this relaxation I feel? What even is that?

2. WE GOT A KITTY! 😻 We adopted Sassy from the Humane Society a little over two weeks ago and I’ve already gone full Cat-Mom. Chris and I both grew up with animals and not having one the last 6+ years has been hard, so when we finally went to the shelter we were totally stoked. To get an idea of what kind of cat owners we are, Chris calls her our “Cat Baby” (yes, we’re those people).

We believe Sassy is some sort of Himalayan-Snowshoe mix. She’s a gorgeous, petite 7.5 pound lady with a HUGE personality! She’s only 2 years old so she has a ton of energy and quite a few kitten tendencies still. I play with her off and on throughout the mornings until she inevitably exhausts herself and collapses in a heap for a 5 hour nap in the afternoon. She’s very loving and isn’t afraid to ask for attention when she wants it. Put simply: she’s a fuzzy little diva who’s already brought so much joy into our home.

3. Lastly, the not so good stuff. I got a nasty head cold three weeks ago, that turned into a chest cold two weeks ago, that turned into a full on asthma flare last week (the first in more than 5 years). I’ve struggled with asthma off and on since I was a little kid. I haven’t written about it on here since I had it under control for so long, but technically speaking it’s the first chronic condition I was ever diagnosed with. At some point, I think I’ll do a separate, more in depth blog post about my experience with asthma. For now, the short of what happened last week is that I went in to the doctor, got a chest X-ray and came home with an inhaler and a 6 day course of corticosteroids. I’m starting to feel better now, but I’ll be on albuterol several times a day for the foreseeable future. Because, you know, breathing is good.

I’ll be working to generate more content soon. In the meantime, Sassy is knocking everything off the bathroom counter which means it’s playtime. Duty calls.

Mind VS Body

My mind and body aren’t always on the same page. I frequently find myself in the position of wanting to go out and do something, but my body won’t let me. When I’m in an IBS or endometriosis flare, I’m very limited in what I am physically able to do. This means I get stuck at home a lot because I need to be near a bathroom or am unable to get out of bed due to intense pain. At times, this leads me to feel that there is a disconnect between my conscious and physical self, (even though I understand that they are integral to each other).

I’m very much a “Type A” personality; I like to keep busy and get bored easily. I love working, even if it’s just a dull secretarial position. I find the act of doing a job, of feeling useful, very fulfilling. Before leaving my job 10 months ago, I was the primary breadwinner – a 20-something just starting a career in higher education. It was an administrative position, nothing too exciting, but I loved working with students. I even began to think about going back to school to get my Master’s to teach adult learners. But, naturally that’s all on hold at the moment. It’s extremely difficult for me to work in a physical office right now since my symptoms are so unpredictable and debilitating, and going back to school when things are so uncertain feels like I would be setting myself up for failure. I’m trying to figure out a work around, but no solutions yet.

Even making simple plans is difficult. I might make plans to go on a hike over the weekend and get blindsided with a flare up. I have to hit the pause button on life and resign myself to a stint on the couch instead. It’s so incredibly frustrating to want to do all these things and come up against road block after road block. On the flip side, I don’t want to put myself in a position of doing too much and making myself sicker (I’ve done this before and it wasn’t worth it).

Often, I feel like my mind and body are completely separate entities constantly at war with one another. It’s difficult to explain, but I feel a sort of dissociation from my own body; that it’s not really mine and there’s been some sort of mistake. This feeling of dissociation is most powerful during an endometriosis flare. The worst symptoms take place during the first 1-3 days of my period. That may not sound like much, but these flares are literally crippling (and keep in mind that these occur in between several IBS flares a month and other endo related symptoms as well).

I experience an excruciating pain that radiates throughout my abdomen and up through my back. The pain manifests as an intense cramping punctuated with a stabbing sensation that lasts anywhere from 12 to 24 hours at a time. Medication doesn’t even touch it, so I don’t bother taking anything anymore; Ibuprofen and Tylenol mess up my stomach anyway. The pain is so intense, I can barely walk, and occasionally it even makes me vomit.

It’s during these types of episodes that my consciousness feels so detached from my physical self. I want to shed my body, much as the snake sheds its’ skin, and start fresh. My husband and I joke about the advancement of android technology; I’d totally go for a robot-body if that was an option.

fullsizeoutput_f11

I get so frustrated with my situation at times – I control what I can, but ultimately I can’t control everything my body does. I see my doctors regularly, I exercise, I eat right, I do everything I possibly can to improve my health. But even that doesn’t diminish the sense of futility that goes along with having a chronic condition.

I started meditating about two weeks ago; I’m trying to let go of my instinct to control everything all the time (easier said than done). I think it’s helping, but it’s still too soon to tell. I’m not at all a religious person, but I’ve been re-reading some of the Buddhist texts I studied in college. The discussions of consciousness, self-reliance and detaching oneself from suffering resonate deeply and bring me comfort. I do try to be thankful for my body; I wouldn’t be here without it after all and I have had a lot of wonderful experiences in my life. Some days, it’s difficult to feel grateful for a body that causes me so much physical distress and I may always struggle with feelings of dissonance and dissociation.

It’s a process.

I do my best and keep going.

 

“Be Prepared”

I joined the Girl Scouts in first grade. A handful of girls in my class were part of a Brownie troop that met at our elementary school in Northeast Portland.

Meticulous and anal retentive since birth, I enjoyed the structured activities, progressive badge earning and, most importantly, the uniform. I selected a fine ensemble of chocolate high-waisted shorts, a blue collared shirt with floral vest and knee-high socks with coordinating blue tassels: I embodied the pinnacle of 1990s Girl Scout fashion.

I was always excited for meetings because it meant I got to wear my uniform to school since we met in the music room after classes had concluded. I felt on top of the world on those days – strutting around the playground with an unearned sense of confidence and authority, taking care not to dirty my Brownie duds.

I looked good and I knew it.

Alas, the dream didn’t last long. After the first year, one of the moms went on a power trip and instigated a hostile takeover of the troop. Scouts wasn’t fun anymore after she became troop leader; all she cared about were cookie sales and making sure her kid sold more than anyone else. And naturally all the other moms hated her. Pretty soon, we all dropped off one by one until there was no one left and the troop was disbanded. My precious uniform moved to the back of the closet and my scouting days were done for good.

I may have only been a Brownie for a year, but I never forgot the Girl Scouts’ motto: “Be Prepared”. This modicum proved instrumental when I started having health problems, particularly when I was still working. I never know when I’m going to flare up or where, so I always carry these essentials whenever I leave the house:

1. Anti-Nausea medication

2. Anti-Cramping medication (i.e. Levbid)

3. A Luna bar or a bag of Rice Chex or Pretzels

4. Maxi Pads

5. Flushable Wet Wipes (or as my husband calls them “Butt Wipes”)

6. A spare pair of underwear (mercifully, I’ve never had to use them, but I’ve had several close calls – nothing is more terrifying or humbling than knowing that as a full grown adult, there’s a real possibility of having an accident in a public place)

I never know how bad a flare might be or if it will take me by surprise, but thanks to the Girl Scouts of America I will always be prepared.

IMG_3145.pngAll the essentials, AKA, my “Go Kit”

Pretty on the Outside, Pain on the Inside

“You don’t look sick.”

People with chronic illness and pain are pretty familiar with that phrase. At one point or another someone’s probably said that to you. I get it all the time. Usually from well-meaning people who are just trying to understand my situation. But sometimes it’s an accusation. Since people can’t see physical signs of illness, they assume I’m not sick at all or that I’m just exaggerating or trying to get attention.

I can understand it from an outside perspective. To most people I look like a healthy, active 25-year-old woman. It can be difficult to understand something without visual proof. And I think, as human beings, sometimes we’re skeptical when faced with something we haven’t experienced personally.

One of the most insidious things about pain is that you can’t see it. You can see blood coming from the wound, but you can’t see the physical sensation of pain. So, with illnesses like endometriosis and IBS, it’s impossible to see from the outside how someone is feeling. They could be in immense pain, but you would never know just by looking at them.

However,  the lack of compassion gets really frustrating, because it makes me feel like I have to hide myself as I truly am in order to avoid questions, judgment or criticism.

The reason you can’t see physical signs of my illness is because I try really hard to hide them.

You can’t see how pale and sallow I am because I wear foundation anytime I leave the house.

You can’t see my under-eye bags that have formed after many sleepless nights because I have concealer on.

You can’t see how thin I am because I make sure to wear layers or looser fitting clothing to try to hide my rib cage while I try to gain back the weight I’ve lost.

When I was taking intermittent FMLA (federally-protected Family Medical Leave) most of my coworkers were pretty understanding. With the exception of my boss (who obviously needed the information to help get my leave approved), I didn’t go into much detail with them about what was happening with me. My conditions are pretty embarrassing and I didn’t feel comfortable going into specifics. Since it was a work situation, it was a weird balancing act: I wanted to give enough information so that they understood my condition was serious enough to miss work, but I also didn’t want to make it really awkward with people I had to see at the office every day.

I did have one coworker who, frankly, just didn’t get it. She was an older lady and I think she was under the impression that because I was young, I couldn’t have a serious health condition. I understand it didn’t help that I tried to downplay my symptoms at the office. I did try to explain to her a few times that because I have chronic conditions I have good and bad periods, but that ultimately they’re here to stay. And she just didn’t really seem to grasp that.

Initially when I would return to work after a flare she would ask if I was okay and seemed genuinely concerned.  However, as time went on and I missed more work, she would ask, “Well, you’re all better now, right?” and “Why hasn’t your doctor figured out how to fix this?”

I would explain (again) that I had chronic conditions; that I was trying to get things under control with multiple specialists, but it might take a while. The sicker I became and the more work I missed, the more I got the general air that she felt inconvenienced by my illness and that she didn’t necessarily believe that what I was describing was legitimate. Granted, that was my own impression but there were some passive aggressive comments and it was a little bit unsettling. I think the comment that bothered me the most was a joke she would make that the results of the 2016 election were making me sick. To be fair, the election results were stomach churning, but that wasn’t the reason why I was dealing with things like debilitating nausea. She made that joke over and over and over, usually right after I had returned to work after a flare.

I called my mom for advice. She has suffered with serious chronic illness from the time she was in her early 20s and I have benefited greatly from her experience.

She told me, “Some people just aren’t going to get it and that’s okay. “

It was such a simple statement, but it honestly took a lot of weight off my shoulders. She was right; I can talk myself blue in the face and some people aren’t going to understand what I’m going through. It’s my life, not theirs and it’s unreasonable of me to expect that everyone is going to be accommodating, because that’s not the world we live in.

So, I let it go.

The comments didn’t stop, but I stopped reacting to them and politely redirected the conversation. I was frustrated at the situation, because, comments aside, I did like her; we had always pretty much got along and shared a lot of laughs. I continued to be cordial and professional right up until my last day.

I eventually confided in another coworker about the comments. It was my last week and even though I had stopped reacting, the jokes and comments still got under my skin. She mentioned that I should’ve taken it to my boss, and maybe I should have. I’m sure a lot of people would say that the way I handled the situation was a mistake, but at that point I was so sick and I had so many other things to focus on, I just didn’t have the mental energy to deal with it. And I do think it taught me a valuable lesson: some people simply aren’t going to understand my situation and there’s nothing I can do about it.

What I can do is be more honest and straightforward about my experience. I think the most powerful tool is for more people to come forward and be open about their own chronic conditions. Sometimes I just wish we lived in a kinder world that’s more accepting of people with chronic physical and mental illness.