If We Were Having Coffee // Losing Hope but Hanging in There

Hello dear readers! Happy Sunday, welcome, and thank you for stopping by for a bit of coffee and catching up. The weather this weekend has been gloomy, and by now the gloom has worked its way right into my mood. I’m tired, and all I want to do is crawl back into bed with a good book and a hot cup of tea for the rest of the day. BUT the weekend is only so long, and I know that doing nothing at all won’t make me feel much better, so I’m up, I have my smoothie, a cup of cold brew, and you, to cheer me up.

‚ÄúThe morning cup of coffee has an exhilaration about it which the cheering influence of the afternoon or evening cup of tea cannot be expected to reproduce.‚ÄĚ

‚Äē Oliver Wendell Holmes Sr.

***

If we were having coffee, I would tell you that yesterday was World Inflammatory Bowel Disease Awareness Day and I celebrated by staying home, resting, and writing. I posted some thoughts on my fight so far with this disease. I tried to convey some of the things that I go through that go deeper than the symptoms and the medication. I tried to¬†help people understand the way it’s affected how I relate to my own body.

Like most things I write here it was written as a reminder to myself, but like all advise we give ourselves, it’s hard to remember and harder to maintain. Just hours after I wrote all that about acceptance and loving myself I had a breakdown. There is so much guilt I have for not being able to be the best me I can not just for me (e.g., not being able to write, to exercise, or go place and do things I enjoy) but for other people too.

It isn’t even the bowel symptoms that are making life so hard! It’s the fatigue and frustration that are forcing me to become so introverted and irritable. I feel myself crawling back inside and away from people, not out of anger¬†but out of exhaustion. I feel bad that I can’t be the sister, daughter, friend, or fianc√©¬†that my loved ones need me to be. Of course, they are understanding, but I can see the sadness there. I know that just because I am sick doesn’t mean they stop having needs to and I have no idea how to get back to them.

***

If we were having coffee, I would tell you that as soon as I begin to see the light at the end of the tunnel, it moves. I’m starting to believe the light is an illusion and to fear that the tunnel goes on and on forever.

This week I was feeling a lot worse and was finally forced to contact my doctor. I was trying so hard to hold on and hang in there until I started my new maintenance medication on Tuesday, but what I was getting so bad I was worried about how much damage I was doing to my body by trying to¬†toughing it out instead of trying something else. So, I called the doctor who then put me back on what I’ve learned is referred to as the “devil’s tic-tacs” in the IBD community, Predisone.

Neither of us wanted me back on that crap. It works miracles, at first, and then it wreaks havoc on the whole body and takes months and months to recover from. But okay, it’s what I need to do, so I felt hopeful I would feel better right away, but she put me on such a small dose it’s made only the smallest dent, enough to keep me working. Then I was hopeful that the new maintenance meds would help right away, but that probably won’t happen either. I’ve gotten so bad that it will be another month or two before I know whether this course of action is right or not.

So, I’ve stopped hoping. Now I’m just hanging in there. I’m going from day-to-day, sometimes hour-to-hour, doing what I can and resting when I must.

***

If we were having coffee, I would tell you that writing was slow this week. I just couldn’t get my brain to stay on task. It was drawn to scrolling Twitter and commenting on Facebook group posts.¬†I did my¬†best to redirect my attention though by remembering that I had pledged to get back to reading more this week.

My girlfriend surprised me with a bit of spontaneous book shopping this week to cheer me up after all that bad news, and I settled on The Girl With All the Gifts by M.R. Carey, a creepy, heartwarming, and thought-provoking zombie apocalypse story unlike any other. It was the perfect book to get me back into regular reading. Well written, attention-grabbing, and easy to read and follow. I highly recommend it, and the movie too!

This week coming week I’m going back to The Odyssey. I love this book, but I’ve never been able to actually finish it! Too much detail I suppose. My brain just shuts down, and my eyes start to glaze over and close after only a few pages. I end up having to reread so much of it but I’m determined to finish it this year, so I keep plugging away.

***

If we were having coffee, I would tell you that the coming week is the last of the school year and as you might imagine the atmosphere at work has been tense. There is so much to get done. Graduations, field trips, bidding for summer school routes, bus and equipment cleaning, evaluations, and training. It’s a bittersweet time. We’re saying goodbye to the kids and as relieved and excited as we are we’re all a little sad too.

You get close to these kids, preschoolers and high school seniors alike. Some of my kids are graduating, and some will be moving away over the summer. Even if I get the same route next year, I won’t see them again. Next year new kids will be moving into the district, and many will be moving from elementary to middle school, or middle to high school. There will be new schools opening and routes will be rearranged somewhat and the training department I work for in my off time is moving and hiring new people.

Everything is changing and much of next year is up in the air. I have a little over two months to try not to panic about it.

***

If we were having coffee, I would tell you that the sun is trying to peek out through the clouds and if I am going to get to spend any time outside of the house this weekend, I had better get up and get going now. I need to look at something other than these walls, hear something besides all the bad news on TV. I need to move my body and be around people. I need to feel that sun and smell the spring air.

I hope you had a productive week and that your weekend has been a relaxing and revitalizing one. If not I hope next week will be better than the last and that you find time to do something just for you before the weekend is over.

Until next time.

***

Thanks for reading! If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a cup of virtual coffee.

Written for the #WeekendCoffeeShare link-up hosted by Eclectic Alli

Photo by Nathan Dumlao on Unsplash

 

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For World IBD Awareness Day // Your Body Isn’t the Problem

It’s been just over a year since my ulcerative colitis diagnosis and so much has changed for me, and about me, since then.

I’ve been through so many medications. I’ve spent a lot of time cooped up at home and come to appreciate every day that I get to spend outside of it. I’ve learned that I’m lucky to have the support system I do and, I’ve learned how easy it is for people to look right through me. I’ve learned a lot about myself, and my body, and how I feel about both, and those lessons are the ones I want to share with you today, May 19th, World Inflammatory Bowel Disease Awareness Day.

Inflammatory bowel disease is an umbrella term for disorders that involve chronic inflammation of the digestive tract. Common symptoms include diarrhea, abdominal pain, fatigue, and weight loss but each person with IBD experiences it a little differently from every other. There can be joint pain, eye, skin, and liver inflammation, severe bleeding, increased cancer risk, and more.

Two types of IBD are Crohn’s disease and ulcerative colitis. The two differ in that Crohn’s can develop anywhere in the digestive tract from the mouth to the anus, whereas ulcerative colitis is confined to the colon or large intestines. In addition, Crohn’s can affect all layers of the bowel wall, while ulcerative colitis only impacts the innermost layer of the colon.

I caution people against comparing the severity of the two diseases. A person with Crohn’s may only experience mild symptoms and may be able to easily control their condition with medication while a person with ulcerative colitis may live in debilitating pain and experience a host of complications for years while trying every available avenue until surgery is required to remove the colon entirely.

Neither of these conditions should be confused with Irritable Bowel Syndrome or IBS, a common digestive disorder that causes abdominal pain and changes in bowel movements but doesn’t cause lasting damage to the digestive system.

Not a lot is known about the cause of inflammatory bowel disease, and there is no known cure, only remission achieved through trying a series maintenance drugs that come with their own risk of side effects until something works. You take that drug or combination of drugs until they stop working, and then you try a different combination all the while toughing out the side effects doctors have little sympathy for.

And as if the disease wasn’t bad enough, and the meds weren’t even worse, there is something even harder to explain, to see, and to cope with, something no one talks about. It’s something hard to put into words and something far harder for someone who can’t feel it to empathize with. The emotional pain and the loss of self, that is what I wish the rest of the world were a little more aware of. How badly I miss who I used to be and how hard it has been for me to love who I have become, both body and soul.

Even the best gastroenterologist, unless they suffer from this disease themselves, can’t understand the shame and the sadness that comes with missing out on life because you have to stay close to the bathroom and the bed.¬†They never tell you how well you will get to know your body, how much time you will spend alone with it, and how little you will recognize it as a part of you.

When I first met with my gastroenterologist 8 weeks after diagnosis, I was already emotionally and mentally a shell of myself. I felt disconnected from my body. I was my mind, my body was something I was chained to, a diseased and weak thing I was forced to drag around. I hated my body. It had betrayed me. It had failed me, and after all, I had done for it, how dare this meat bag put me through so much. I went from being a happy, friendly, and curious person to being angry, sullen, and withdrawn in a matter of months.

I didn’t mean to lose myself so quickly, but your world kind of turns upside down when your body and mind become at odds with one another. It’s a jarring experience, especially for the young. You look at your self in the mirror you are disgusted by what you know is a defective physical manifestation of who you are you. You wash yourself in the shower and can’t bring yourself to look down. You do what must be done by your body, no more no less, no love and nothing extra. You separate from yourself and this disconnect, though natural and completely understandable, negatively impacts your quality of life.

What I want my fellow IBD warriors to know is that defective body you have come to hate is trying so hard to get well and what it needs from you is what you need from the rest of the world. Your body needs support, understanding, time to rest, to heal, to be the best it can be. Your body isn’t the problem. The problem is the world your body has been forced to navigate which leaves no space for bodies in pain and never slows for bodies who need more time.

It’s taken me a long time to realize that my body, me, I, am trying very hard to heal but some parts are just broken. Parts are missing, or maybe there are too many parts. The instructions to function are deleted, scrambled, corrupted, and irretrievable, but my body is trying. I am trying.

I know now that my body hasn’t failed me. I failed myself when I failed to see myself as a whole entity. I failed when I rejected myself. I failed when I dragged myself around like spoiled meat. When I refused to see myself or to love myself. When I failed to be understanding and tender. My body is strong, and it deserves love from me at the very least.

I’m still suffering. I’m still in pain, and I’m still frustrated. I’m still stressed out and I’m still very worried about what the future will bring, but I know none of that is my fault. It isn’t my bodies fault. It isn’t anyone’s fault!

Instead, I point my rage where it belongs. I’m frustrated that it takes so long to move from one treatment plan to another. I’m frustrated by the red tape and the sky-high price tags on medication I need to live my life. I’m frustrated that so many other IBD suffered I’ve spoken too have so little information and doctors who don’t return a phone call or explain where they should go from here. I’m frustrated by people who dangle false hopes of a cure and by the suffering spread by loved ones with no patience, compassion, or understanding.

I’m frustrated by an economic system that won’t let you take time off of work to give your body the rest it needs. I’m frustrated by a society that teaches us that self-care is selfish, that stress is normal, that invisible illnesses don’t exist. I’m frustrated by businesses that close their bathrooms to the public. I’m frustrated by the lack of accommodations everywhere you go. I’m frustrated that the world doesn’t see me, all of me.

I’m frustrated that it’s so hard for me to see me too.

But I’m trying, and I think we should all try a little harder to see ourselves, but especially those of us dealing with IBD, and anyone with a chronic illness. You have to make peace with your body the way it is now. You have to work with it, compromise with it, embrace it, encourage it, and love it. You have to take to be able to look in the mirror and register what you see as you. You have to be able to touch your own skin and connect with yourself.

All bodies will find their limits eventually, and those limits will constrict with time for us all. I want you to know, fellow IBD and chronic illness sufferer, that your capacity for self-awareness, self-acceptance, and self-love will far outpace the average human because you have had to find that truth sooner.

Today, I just want you to know I see you and I know what you are going through. I know it’s hard. I want you to know that I am proud of you and that every part of you is beautiful and good just the way it is.

Let’s make sure the whole world knows it too.

***

Thanks for reading! If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a virtual cup of coffee.

Photo by Annie Spratt on Unsplash

If We Were Having Coffee // Getting Back to Old Habits

Hello dear readers! Happy Sunday, welcome, and thank you for stopping by for a bit of caffeine and catching up. I’m up late this morning. That’s not exactly true, I was up early, but I found myself back in bed three times before I considered trying a cup of coffee. Now, after a quick cup of cold brew and a little sunshine and fresh air coming through the open windows and I have the laundry started, the dishwasher loaded, some writing going, and I’m ready to sit down with you.

***

If we were having coffee, I would tell you that I didn’t want to talk about ulcerative colitis this week. I’m sure you are tired of hearing about how much pain I am in or how my medication isn’t working, or how afraid I am of what might happen in the future. I didn’t want to tell you that this week was worse than the last, but at least I’m one week closer to the start of my new medication.

I didn’t want to tell you any of that but May is Inflammatory Bowel Disease Awareness month, and I feel the need to overshare through it. This week I’m dealing with people doing that weird thing where you being sick everyday irritates them.

Last week I got frustrated when a co-worker told me I looked sick asked if I had a cold or something contagious in any way. I explained, for the hundredth¬†time at least, that I am not. She asked what was wrong then. I answered that I had ulcerative colitis. I glossed over the TMI symptoms and just told her I was prone to fatigue and joint pain, she only shrugged her shoulders and told me she’d never heard of it. I could tell she didn’t care to either. She advised me to go to the doctor. I left it at that rather than get into all the doctor’s visits, test, and medications and am already going through.

This isn’t a new experience. Every day someone asks me how I am doing and I can tell that they just want to hear that I am better. They want to hear that there are easy answers. I understand that chronic illness can be hard for people to understand but if there is anything I can make you aware of this month, it’s that for some people pain is an everyday reality, and there are no easy cures. We may never get better, and we certainly will never get used to it, and that is okay. Let that be okay.

***

If we were having coffee I would tell you that my biggest challenge has been changing my diet to foods that are easier on the guts, but significantly less satisfying. I’m living off of bone broth, fish, boiled eggs, and smoothies. I’m drinking peppermint tea, “golden milk”, and Gatorade to stay hydrated and keep my electrolytes up. If I get a craving for something sweet, I can have Jell-O. That’s it. No hot wings, no pizza, no burgers. I didn’t even get to enjoy any tacos or margaritas this Cinco de Mayo. Ugh!

***

If we were having coffee, I would tell you that I’m still plugging away at my A to Z posts. I’d planned to post a lot more than just the one I did this week, but work interfered unexpectedly. That break I had been hoping for ended almost before it started.

I’m also struggling to write during the hours I set aside for it at home. I’ve known for a long time that I write better when I am at work, when I am not supposed to be writing, when I don’t really have the time, but I’m struggling to replicate that kind of panic at home.

It’s helped to put my headphones in, to rid myself of the silence and either put on music to change my mood, or podcasts to give me that background chatter I’d find in the office. Coffee helps and getting up for a minute here and there to quickly take care of to-do items, as I would at work when my boss or coworkers need something. I can’t sit on the couch, and I can’t have the TV on. I have to “get ready” for writing like I am getting ready for work. I have to get dressed, eat breakfast, brush my teeth, and go there emotionally.

Of course, I didn’t figure any of this out until yesterday. When I did though I got the first newsletter I’d sent in months out and got a ton on brainstorming in. I’m hoping thinking of writing as work will keep my ass in the chair much more consistently going forward.

This week I am setting goals for myself. I am going to write four posts, including an A to Z reflection, and my “M,” “N,” and “O” posts, plus get another newsletter out. They are a part of the next project I have in mind, and I can’t move forward until they are done. I’m trying to keep in mind this advice I read from Austin Kleon last week:

First draft motto

A post shared by Austin Kleon (@austinkleon) on

***

If we were having coffee, I would tell you that I’m looking forward to the coming week. I don’t have a ton of work scheduled yet, and I’m planning to get back into some old habits I’ve let fall in the past month. I am going to start reading again and journaling. The time I had previously devoted to those tasks became nap time, and while the rest is great, I miss my books.

I’ve also got my magazine and newspaper piles organized, and I’ll be posting some more blackout and a few attempts at cut-up poetry on Instagram. I’ve missed moving other people’s words around. If I get ambitious, I may include some¬†collage¬†art too.

This weather report for the next 7 days looks absolutely gorgeous, and I might reward myself with some time outside. One hour, half for reading, half for writing about my day. It’s a small thing, but right now I need all the small joys I can find.

I may try some walking too. The evenings are warm enough for a trip around the neighborhood with the dog. I know she’ll love that.

***

If we were having coffee, I would tell you that is about all I can pull out of my little boring life to share with you this week. Nothing much is new, but there have been a few things to think about. Not every week can be about action, some have to be about rest and reflection too.

I hope you had a productive week and I hope your weekend was relaxing. If not, then I hope the next will be better than the last.

Until next time.

***

Thanks for reading! If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a cup of  virtual coffee.

Written for the #WeekendCoffeeShare link-up hosted by Eclectic Alli

Photo by Nathan Dumlao on Unsplash

The Little Things Are Where Recovery Begins

‚Äúim team ‘cool karen ive got depression and that means i‚Äôm going to try this because i‚Äôve got to try something’ i‚Äôm team ‘romanticize recovery’ i‚Äôm team ‘it isn‚Äôt working now but it might in the future and it‚Äôs worth staying to find out’.‚ÄĚ

‚ÄĒ inkskinned

For as long as I can remember depression, anxiety, and god knows what other undiagnosed mental illnesses have been a part of my life. Some of it is nature, I believe. Some of it is nurture, I’m sure. But some of it is just being alive, being a person, being scared, and being hurt and disappointed by life.

Healing is a long journey I am still walking, and one I may walk forever, but I am always getting closer. Through trial and error, research and professional help, and, mostly, fumbling around in the dark, I am learning more and more about what works and what doesn’t.

The first time I sought help a therapist told me‚ÄĒafter hearing about the bad things that happened to me, the stupid things I cried about, and all the ways I was hurting myself and others‚ÄĒthat everything I felt and did was a perfectly¬†normal response, considering what I had been through.

That is, anxiety, self-loathing, self-destruction, unstable relationships, and depression, were not at all indications that I was broken, or flawed, or unworthy of love. Mental illness is a perfectly human way of existing in this world.

The second time was someone I loved very much pointing out that depression and anxiety are not just illness. They are lies told to you by your own mind. The voices telling you that you are stupid, that you are ugly, that you don’t deserve happiness, that you don’t deserve life, that nothing will ever get better for you, it’s all a fucking lie. Every time that lie is spoken to you, you can speak right back. You can call out the lie. Like any liar who has been caught, your illness will double down when you confront it, but you just let it know that no matter how loud it gets, or what evidence it twists, you will never believe it.

It took me a long time to internalize these lessons, and some days I still struggle to stay on the track, but lately, It’s like I’ve hit a roadblock. My progress is slowing, and now, on my¬†bad days, it feels more and more like I’m taking steps backward.

But my instincts tell me that when roadblocks are met, there are more lessons to be learned.

 

‚ÄúThere is no point treating a depressed person as though she were just feeling sad, saying, ‘There now, hang on, you’ll get over it.’ Sadness is more or less like a head cold- with patience, it passes. Depression is like cancer.‚ÄĚ

‚Äē Barbara Kingsolver, The Bean Trees

Earlier this year I was diagnosed with ulcerative colitis‚ÄĒa chronic, incurable autoimmune disease that primarily affects the colon. Learning to live with a chronic physical illness, with the impact on my life as well as my emotions and the bunk advice from people who just don’t get it has really opened my eyes.

I’m learning to accept that life isn’t fair, but it’s still good. I’m learning to accept that even when your body fails and betrays you, it’s still a good body. I am learning that even when you are in a bad situation, there is still room for gratitude.

But the biggest lesson of all, the one I really need to internalize right now, is that just because there is no cure, that doesn’t mean treatment is useless, and that¬†treatment is in every little thing that you do.

After my diagnosis, my doctor explained that treatment meant more than just visits to her office and medication. It included taking care of my stress levels, getting in tune with my body, asking for help when I need it, exercising and learning to eat well, drinking water, and making self-care a top priority.

She literally told me to meditate, do yoga, think positive thoughts, and do whatever it takes to get to my “Zen place” because the immune system is directly influenced by¬†stress, anxiety, and emotions.

She added that, of course, none of that will stop my immune system from attacking the lining of my large intestines. There is no cure for ulcerative colitis, but taking care of myself in these little ways will help me achieve remission, and stay in remission, longer. She told me that even when I am too tired, and even when it hurts, even on my worst days, I have to try.

Depression, anxiety, and many other types of mental illness function the same way. You start with the little things, and all these little things are part of your treatment. They keep you healthy enough and strong enough to fight.

Lately, I’ve seen a lot of frustration and anger in the comments and replies of posts and tweets regarding simple self-care reminders and tips as part of treatment. The new thing is to shout about how no one understands depression and nothing can help, that reminding people to shower, eat well, take a walk, drink more water, text their friends, or say something positive to themselves when they can, is bad advice. Those, in my opinion, are the lies I was talking about before and now, with social media taking up so much more of our time and attention, and with our online relationships becoming more and more significant, these lies are finding a new way to spread and take hold.

It’s understandable that after years of being dismissed or misdiagnosed a person might be sensitive to the ways mental illness is discussed by “neurotypicals,” but a lot of what I’ve seen online is too far to the other end of the spectrum. Mental illness may or may not be curable, depending on the cause, but it is under all circumstances treatable. Saying that out loud doesn’t have anything to do with how serious a person’s condition is, and it isn’t dismissive of the struggle and hardships sufferers endure on a day-to-day basis.

And, yes, some of the pushback is warranted. Some people do believe that mental illness is a choice, a weakness of character or failure to control one’s thought, or to properly care for the body and that a diet change and a little sunshine will cure you. Yes, those people fail to understand what depression is, but you have to learn to separate their misunderstanding from what it means to properly care for yourself.¬†You have to take a step back look at how you might be perpetuating bad practices and beliefs about mental illness when you dismiss advice that might help someone else.

We have to be careful how we say things, and we have to be open to letting people heal in the way that makes sense for them. We have to be careful about confusing what doesn’t work at all and what doesn’t work for me.

There are some who may be losing a battle right now, they may be looking for help and what you say can sway their resolve either way, especially when they are young, or newly diagnosed, or undiagnosed but in need of help. To tell them there is no getting better is to perpetuate the same lie their illness is telling them. We have to change the narrative. You may not be cured, but you most certainly can get better!

Every treatment option doesn’t work for everyone, and certainly, none of them work for the same person all of the time either, but any doctor will tell you that to fight a disease you have to do all these little things if you want to be strong enough to fight.

Let others start with just being able to get out of bed and eat something so they can take their medication. Let others start by getting outside, taking a walk, and enjoying a damn sunset, so they can get out of their own heads for a minute. Let others have their face masks, bath bombs, and glittery nail polish so they can love themselves for a moment today. Let other people have silly conversations, and laugh a little, so they don’t feel so alone. Let other people try things!

Some days wallowing might be the best you can do, but it is no long-term strategy.¬†Remission is the primary goal. You might not know what “no evidence of disease” will mean for you yet, but you don’t have to. All you have to do is keep working toward the best and healthiest life that¬†you can have.

So I guess that’s what I am trying to do here. I am saying to you and to myself that, yeah, it sucks to wake up every morning feeling the way we do, and I know that people don’t get it and everyone thinks they know what’s best for us but please, don’t give up. Please, don’t shut yourself off from things that might help.

Be honest with yourself about what healthy means and what you know you struggle with. Be honest about what you haven’t even been trying to do, and try to do it. Try eating something today. Try taking a shower. Try drinking more water. Try a face mask. Try getting out into the sun. Try texting a friend. Try looking in the mirror and saying one nice thing. Try breathing. Try helping someone else try.

It might not cure you, but it might make you strong enough to find a cure someday.

***

Thanks for reading! If you like this post check out my weekly-ish newsletter for inspiring reads + existential musings on life, love, and inevitable human suffering. Or help support what I do by sharing a cup of coffee.

Featured photo by Ben Blennerhassett on Unsplash

If We Were Having Coffee // A Follow-up and a Bit of Bad News

Hello, dear readers! Thank you for stopping by for a lot of coffee and a little catching up. I’ve already had a few cups, and that is about all I can handle, so I’ll be having some refreshing iced peppermint tea. You are welcome to either, or something else entirely.

‚ÄúThe first step on my journey of personal growth is getting a cup of coffee.‚ÄĚ

‚ÄĒ Death Wish Coffee

***

If we were having coffee, I would tell you the weather around here has been a bit crazy. We’ve been swinging wildly¬†between cold and heat, snow, and rain, and the sun. That means that lately, my moods and energy levels are all over the place too.

But I am happy that thunderstorms are returning to Colorado. I love how they seem to roll in at the same time every afternoon to give us a break from the intense heat. The clouds cue us all to relax and settle in for the evening and the sounds of rain and thunder lull you to the best sleep you will have all year.

I’m not looking forward to the heat I know is only weeks away. Our old swamp cooler is out of commission, and we haven’t really come up with a plan for getting a new one. It’s hard when both parties in a relationship are chronic procrastinators.

***

If we were having¬†coffee, I suppose¬†I would tell you the bad news. I had another doctor’s appointment this week, a follow-up¬†to the last follow-up¬†that was all bad news too. For those who don’t know, earlier this year I got really sick, and after a round of tests, I was diagnosed with ulcerative colitis. I was put on a steroid to stop my symptoms quickly but the steroid is awful for me so I can’t take it forever. So, I was put on another medication that takes some weeks to work but can be taken long-term.

So, when I went to check in with the doc, she tells me that she doesn’t think this other long-term medication is going to work at all‚ÄĒshe never did!‚ÄĒbut we have to let it fail before we can move on to something else. So, I am coming off of the steroid‚ÄĒwhich is awful because of withdrawal‚ÄĒand we are going to just wait and see if I get super sick again. If I get sick, we move on to some harsher and scarier medications. If the pills I’m on now do work my doctor¬†said I should “thank God and choke down those pills every day.”

Even though I’m freaking out I’m glad I have a¬†doctor that is thinking about the next steps before I start feeling shitty again and have to make decisions about what to try next.

***

If we were having coffee, I would tell you that it wasn’t a good writing week, not really. I didn’t post here as much as I wanted to here. On Monday I wrote about not being okay and¬†posted my end of the month¬†check in¬†for¬†April, that was it. I had¬†hoped for a review¬†of¬†Orlando by Virginia Woolf and¬†another¬†poem on¬†Thursday, but I felt¬†really¬†run down. I did work on my zine project, and a submission for Femsplain’s last prompt, and I got a newsletter out, so all wasn’t lost.

I did spend a lot of time reading. I’m just passed the halfway point in The Mind’s I¬†which feels like quite an accomplishment considering its intimidating size and subject matter. This is the second time I have attempted to read this book, and I’m already further than the first time. I may need a third to fully¬†understand it all though.

***

If we were having coffee, I would tell you that this weekend was a good one. Friday night I asked my girlfriend out for a date night. We had dinner at Noodles and Company and then walked over to our favorite theater for a few drinks and a late showing of Guardians of the Galaxy Vol. 2, which we both slept through because we are getting old.

Saturday we took our very nervous dog out for a car ride and a trip to Petco, and she did so well guys! I am so proud of her. She was still very nervous, but she followed her commands and even let us try a new harness on her in the store without freaking out. We are working on socializing her and letting her know that we will keep her safe so she can relax but it is going to be a long process.

Then we went thrift store shopping where I picked up a couple of books, One Flew Over the Cuckoo’s Nest by Ken Kesey and Mrs. Dalloway by Virginia Woolf. My girlfriend found a Polaroid camera on for just $3.¬†Urban Outfitters sells the same one for $160! We got a few other knickknacks for the house and came home to pizza and hard cider and settled in to watch the new season of Sense8 on Netflix.

***I

If we were having coffee, I would tell you that as much as I am enjoying our visit, I have to cut it short here. There is so much to be done around the house and in preparation for tomorrow, just thinking about it is making me anxious! I better start now before it’s too late and I’m overwhelmed and upset and incapable of anything.

I hope you had a productive week and a relaxing weekend too, and I hope you’ll stop by the comments below and say hi. Let me know what you’ve been up to. I do love hearing from you all.

Until next time :)

***

Check out my weekly-ish newsletter for interesting reads + some of my own existential musings on life, love, and inevitable human suffering, or share a cup of coffee perhaps?

Written for the weekly Weekend Coffee Share link up hosted by Nerd in the Brain

Featured image via Clear Polka Dots

If We Were Having Coffee // Happy Easter to You, If That’s Your Thing

‚ÄúYou’re invited to join me for a cup of coffee that I’ll be having whether you join me or not.‚ÄĚ

‚ÄĒ¬†Mutiny Information Cafe

Hello, dear readers! Thank you for stopping by this Easter Sunday. I don’t actually celebrate the holiday, I’m an atheist with no children, so there isn’t much in it for me, but I hope those of you who do are having a wonderful celebration. I hope there are brightly colored eggs, delicious chocolates, good food, and lots of laughter. I hope this morning’s church services fills you with a sense of peace and belonging and hope.

As for me, I’m doing my usual Sunday thing. I was up early, but I fell back asleep and woke up later than I wanted to. Now I’m scrambling to catch up. I’m cleaning and writing, both at the same time and neither¬†effectively.¬†One of these days I will learn.

***

If we were having coffee, I would tell you that this¬†past week was a good one. In case you didn’t know, it was my birthday week! People who know me know that my birthday is super important to me and I spend the majority of the month of April celebrating it.

I believe that everyone deserves to be a little self-absorbed around their birthday. I mean, for one, it took the universe a long time and a lot of work to get to you, and also, it took you a lot of time and work to get to where you are, all of that should be acknowledged with lots of good food, drink, and laughter!

I spent my week at dinner with family (it was also my mother’s birthday week), at the movies with my lovely lady seeing one of my old favorites, Starship Troopers, and out for an oyster brunch with my lady too. Today I will be out to dinner again, this time with the in-laws and later in the month, there will¬†be a series of nights out with different groups of friends. There were some gifts, nothing big, but all very lovely but my favorite thing by far is the birthday card my girlfriend DIY-ed for me:

***

If we were having coffee I would tell you that this past week was a crazy one, politically. Our newest president has my anxiety running high nearly nonstop to the point where i have to check out, from the news, from social media, from friends and family who want to talk about it.

I used to enjoy following and discussing politics but lately, all I can feel is either a vague but deep fear or a burning embarrassment.

Life in this country feels a lot less certain than it did just a few short months ago and the world as a whole feels on the verge of something big and bad. Tensions are high everywhere and as much as I want to get involved and fight back a big part of me wants to cling to the things that feel safe, the things that feel like home, for as long as I can.

Every week I tell myself that I will do more, say more, and find the courage to¬†resist but every week I look out into the world and feel afraid again. Not this week either it seems….maybe next.

***

If we were having coffee, I would tell you that while my body still isn’t feeling much better yet, my mood has improved dramatically. Part of it was all the well wishes, gifts, and spoiling I got, and part of it is the ever improving weather are having as we move further and further from winter, but mostly it’s because summer is right around the corner and with it comes an easier work schedule and a lot less stress.

Summertime is on the way and, since I work for a school district, that means summer break. I still work, but I have much more control over my schedule. I will be cleaning, filing, doing testing and training, and helping make sure that all of our school buses and all of our equipment is ready to go for the next year.

During that time I can choose to work only as many hours as I need to and spend the rest of my time working on some projects and reevaluating what it is I am doing here and with my writing in general. I have more concrete plans for a zine; I want to work on some real poetry and get back to creating some art, and I want to do as much of it outside, in the sunshine and fresh air, as I can.

***

If we were having coffee, I would tell you that, slowly, a new routine and a new normal is beginning to sink in as I learn what it really means to live with a chronic illness. I feel more at ease, more accepting, and less tense or angry.

I am learning to let go of some things, like being able to sleep in. I have to be up by 6 every morning to eat and take my medication. I’m working on letting go of being able to eat whatever I want to eat. This week I discovered that anything with nuts or seeds is out, and I may have to cut out beef entirely, which is probably a good thing. I am letting go of wishing to have the energy I used to have and working on making the most of what I do. Naps are back in around here but in moderation!

I don’t want to be fighting myself every day. I don’t want to be disappointed in myself every day. I don’t want to give up.¬†I want to adjust.

***

If we were having coffee, I would tell you that the time has passed too quickly, as it tends to do when you are having fun, or coffee, or good conversation. There is a lot for me to do before I head to dinner tonight. The house is in desperate need of mopping, dusting, and vacuuming and the dishes and laundry are piled high.

I hope your week was a good one and that your weekend was relaxing and warm. If you have a minute drop a note in the comments and let me know how you are. I worry about you, you know?

Until next time :)

New shirt to match my new mood :)

A post shared by Lisa Blair (@zenandpi) on

***

Check out my weekly-ish newsletter for interesting reads + my own existential musings on life, love, and inevitable human suffering, or buy me a cup of coffee perhaps? 

Written for to the Weekend Coffee Share link-up hosted by Nerd in the Brain

Featured image via Unsplash

If We Were Having Coffee // It’s My Birthday Month, and I’m Starting Again

‚ÄúEven bad coffee is better than no coffee at all.‚ÄĚ

‚ÄĒ¬†David Lynch

Hello, dear readers! Thank you for stopping by for a bit of coffee and catching up. I probably shouldn’t be having coffee, the caffeine and the acid are probably the last things my stomach needs, but I’m at home today, and coffee means a lot to me, so I will drink and deal with the consequences later. I know it will be worth every sip.

I know I haven’t ¬†been around much lately, and we will get to why in a bit, but before we do I wanted to warn you that today’s post might contain some TMI subjects and descriptions and a bit of bad language. If you don’t want to hear that kind of thing maybe skip ahead a bit or skip away, I won’t mind I promise.

If we were having coffee, I would tell you that this week was fucking awful.

***

If we were having¬†coffee, I would tell you that I know you, and everyone else, me included are probably tired of hearing me talk about my health and my medication and my anxiety and my hope that any day now I will start to feel better. You are probably tired of hearing week after week that I am still sick, but here I am telling you once again that I am still sick. Not just still, I’m actually worse and getting more and more worried as each day goes by.

Since my ulcerative¬†colitis diagnosis, my whole life feels upended. All I can think about now is my stomach, and bathrooms, and what foods I can and can’t eat, and whether or not I can work today, and when my next doctors appointment is, and if this new pain is due to the disease or my medication, and what medication I am on and what medication will come next if this one doesn’t work, and whether or not I should call my doctor, and whether or not this is serious, and if I’m sleeping enough or too much, and oh god I have to go to the bathroom, again, again, again, again…..This is my life now, and there has been no room for writing anymore.

***

If we were having coffee, I would tell you that I feel overwhelmed by all the things I haven’t been able to do or finish because of all of this. I haven’t written a new post here in days, and the comments are piling up. I failed the Blogging A to Z Challenge before I was able to really get going. I’ve missed submission deadlines, and I haven’t sent a newsletter in weeks. I’m so far behind I don’t know where to even begin to catch up, but I want to.

I want to find a way back to doing all the things that made me feel good. I want to find a way to get back to telling my story and spreading my message. I want to finish what I started, so I am starting again.

***

If we were having coffee, I would tell you that I think my first two Blogging A to Z posts turned out pretty good, and even¬†though I couldn’t keep going I haven’t gotten over my need to talk about all the bad things in the world. So, I am picking up the project again and combining it with another project I can never seem to get my shit together enough to finish. I am going to make a zine/chapbook from the posts!

I have no idea when the thing will be done, now that I have given myself permission to work outside of the April deadline but I’d like to have a draft done by the middle of may. This will be my first physical thing I am making so please be patient, but I am promising that this thing will be a thing and I will keep you posted if you promise to keep me accountable.

***

If we were having coffee I would tell you that my birthday is coming up this week and despite everything, I am still excited. It’s not a big birthday, I’m just turning 32, but it’s my day and I take it very seriously.¬†I like to think of the entire month of April as the time to celebrate me.¬†I mean, your birthday is not just the day to mark when you came into the world but a time to celebrate another year that you got to be on this Earth. What could be more important?

I always think about how each birthday could be my last and it feels wrong not to make each one meaningful no matter how hard aging is or how depressing or bad the year has been. When you consider that there are so many people who won’t be getting a birthday this year your perspective changes. You realize that each one is a gift and¬†worthy of celebration.

This year, like every year, I’ll be making time for dinners and drinks with family and friends and a bit of quiet reflection on the past year and planning for the next. I don’t ask for or expect gifts, I just want to see all the people who make my life meaningful but I know my girlfriend got me something good, she always buys the best gifts, and I’m anxious to find out what it is.

***

If we were having coffee I would tell you that I have come to the end of my cup of coffee and, sadly, the caffeine has done nothing for my energy levels. I need a nap. Thank you for chatting with me, it’s been good for me to get up and get typing again. I hope to keep the momentum going.

I hope you had a good week, and that your weekend was a relaxing one. If you have a minute drop by the comments and let me know how you have been and what you have been up to.

Until next time :)

An early birthday present to myself, from myself ūüėä #sagavol7

A post shared by Lisa Blair (@zenandpi) on

***

Check out my weekly-ish newsletter for interesting reads + my own existential musings on life, love, and inevitable human suffering, or buy me a cup of coffee perhaps? 

Written for to the Weekend Coffee Share link-up hosted by Nerd in the Brain

Featured image via Unsplash