Thursday, May 24, 2018

I feel like I start a lot of my blogs with "oh it's been a while," as if I don't write daily about our lives, but this blog does often get pushed to the back burner as it requires more thought and more words. I have many things I would like to sit down and focus on, but my distracted brain and lack of time management is going to be the death of me. I thought maybe if I made a todo list of some sort I could have my friends help me to stay accountable, so here goes:

1. Edits. Due next week, so I really should get that done.

but while I'm procrastinating those,

2. ICQI reflection specifically regarding how even in academic conferences where WE SHOULD KNOW BETTER ableism runs rampant.
3. Journal article with Erin about invisible illnesses.
4. Journal article with Cody about enactments of medications on our bodies.
5. More blogging, reading, etc., and less facebooking.

Things I'm processing:
1. Introversion vs extroversion in relationships?
2. What does disabled mean when you are medically disabled, but not legally disabled?
3. How much do I hovercraft parent and how much do I push for independence?

Sigh. Lunch. Meeting with a student. And then EDITSSSSSSSSSSSSS.

Friday, September 8, 2017

Low Spoon Balance and Gluten Free Foods...

Life with multiple chronic illnesses means learning how to save spoons wherever I can. One way that we've done that in our house is to eat a lot of convenience foods, order in, or go out to eat, because by 3pm my husband I are spent. In addition to having limited spoons by dinner time, my host of illnesses and surgeries requires very specific eating habits and I'm constantly fighting a battle to eat things that won't make me sick.

Let me explain, my bariatric surgery requires me to eat 70-90 grams of protein a day, 50-100 grams of fat, and less than 50 grams of carbs a day. Veggies, sugar, and carbs are on the list of gas causing items that I should avoid. And let me just say that the gas pains aren't your normal gas pains... these pains are like someone is taking a knife and stabbing my abdomen, so avoiding veggies seems like common sense. I already ate like that before my bariatric surgery, so it wasn't a big deal when I was told that my diet needed to basically consist of meat and cheese. But then my pancreas crapped out, and the diet for chronic pancreatitis is mostly carbs, fruits, veggies, and lean protein. I have mostly managed to find a happy medium between the two ways of eating, by drinking my protein, and eating chicken fajita tacos and all of the carbs. It has literally taken me a year to find enough foods that I can eat that don't piss my pancreas off, and also don't make me miserable.

Because I am currently osteopenic and not absorbing vitamin d and calcium, my doctors (4 of the 6) decided I needed to be gluten free. My bio mom has celiacs, and I'm basically having ALL of the symptoms, so I get it. I really do. But... I'm not sure how to be gluten free when veggies and fruits cause massive amounts of gas, my pancreas cannot handle a lot of meat, and I am the world's pickiest eater. I don't like sauces, specifically things like ranch, sour cream, Alfredo sauce, etc. I can't eat tomato sauce, because it's one of the things my pancreas doesn't like. Anything that has the hint of a sharp flavor, or bitterness (I'm looking at you veggies), are also avoided. Cilantro tastes like soap, so I assume my tastebuds are just stupid. I do eat more flavors than I ever have before, but I definitely have some texture and taste issues, and some serious food anxiety. I mean, wouldn't you have food anxiety if everything you ate had the potential to cause you to vomit or have severe pain? And I do mean everything.

And yes, to a certain extent I know I need to just suck it up and eat, but the amount of emotional energy that comes from trying new foods rapidly depletes my spoon balance. Thinking about what to eat, worrying about how it will affect my pancreas, or my stomach, also takes a lot of spoons. Preparing foods that potentially will go uneaten by everyone except the husband, takes spoons. Grocery shopping and reading ALL of the labels takes spoons. Spoons I simply don't have.

My instinct is to just replace all of my convenience foods with the gluten free version, but truthfully, that is more than my grad student budget can take, and I've heard that the foods will make me gain weight anyway, so I probably need to avoid them. My friends are being kind and giving me suggestions of foods they like, but most of them do not fit into either my bariatric diet or my pancreatic diet.

And because I'm already stressed to the max with grad school, my health, and my children, I find myself just choosing not to eat, rather than fight the battle of trying to find foods I can eat, and will enjoy.

And that's not healthy either.

Sigh. I'm honestly not sure how to have chronic illnesses, a low spoon balance, and so many different dietary challenges. I'm 100% certain that I'm not going to be able to maintain gluten free without pissing my pancreas off, killing our grocery budget, and a lot of wasted foods because I didn't like something we tried that fit into my diet.

I am open to suggestions. Someone in my friend network has had to have been able to overcome texture issues to eat veggies, or has some magic cure for the gas pains that come with eating fruits and veggies, right?

I guess at this point I should just be happy that I wasn't told to give up dairy as well...

Thursday, May 11, 2017

Gender & Disability...

There are simply no good words to describe my frustration with the medical system, right now. I went to the ER to get answers and got treated like a criminal looking for my next fix. I promise you, if I wanted to get drugs I have the hookups and have access to all of the things, which is ironic because I've never actually done drugs. I've spent years watching family members spiral out of control from pills, heroin, etc. that I have never been interested in abusing these things. There is only one drug that I would even consider it, and that is only because it is legal in other states, and there is tons of research about pain relief and cannibus.  And let's face it, pain sucks. When it was just degenerative discs and fibro, I could manage, but the added layer of pancreatic pain leaves me spent, and unable to focus. 

Along with being frustrated about being treated like a drug addict, I am equally frustrated that I left the ER with absolutely NO FREAKING ANSWERS. None. There were possible diagnoses on the CT scan, but only one of my doctors seems to be concerned about that. <eye roll> 

I've been reading journal articles regarding gender and illness over the last month, and I've come to the conclusion that the field of medicine is mysogynistic. I know, shocking right? 

But scientific research is focused on the male body, and not the females. 

Last I checked, my 160 pound female body reacts differently than any males that I know in regards to medicine. And why wouldn't it? I mean, besides the fact that my mass is smaller than the average males', the male body and the female body are quite different. Yeah, we all have 2 arms, 2 legs, etc., but our hormonal makeup and metabolism are different. Hence why Jasen can start a diet and lose 20 pounds over night and I could start the same diet and gain 20. So if we metabolize our meals differently, wouldn't we also metabolize medicines differently? 

Additionally, when research is done, it is assumed by the scientific world and the popular press that it can be applied in mass to people of all race, ethnicity, and gender. For example, how many of you know the differences between the symptoms of a male heart attack and a female heart attack? There are differences. Look for yourself: and see. What? Women experience a heart attack differently than men? Who'd a thunk it? Sigh.

Another difference that I have noticed is that although 1 in 5 adults will experience a debilitating illness that will forever alter their life, women are especially prone to disability with at least half of women being disabled by the time they reach 65, but there are little answers to be found for the conditions that cause disability in women and even less research into women of color and their health.  For example, fibromyalgia has been around for ages, but it wasn't until the 90's that the American College of Rheumatology included a specific set of guidelines, and even now I have had a doctor and a physical therapist both imply that my pain was all in my head. <hard core eye roll> There is little research about the causes of fibromyalgia, but I sure can find oodles of research into the causes of erectile dysfunction. 

In light of everything happening politically in our country, I am not hopeful that any of this will change, but I wanted to put the information out there, so that regular folks can understand just one of the struggles for women with chronic illnesses. If I cannot find research on my specific illnesses, how am I supposed to manage them? If the research that is out there is all about the white male body, how am I supposed to know how medications will affect my female body? If the symptoms put out into the world are really only the symptoms for the male body, how are women supposed to know what their body is doing? If illnesses that are typically female are under-researched or un-researched, how the hell are women supposed to fight against illness? 

Having multiple chronic illnesses is frustrating, and exhausting. I'm tired. I want answers. 

Friday, April 21, 2017

Life with chronic illness...

Real talk ahead. Not whining. Just shooting straight. 

This video is my new normal...I do great at short trips & I'm doing better about longer days, but by long I mean 4pm. The trip to six flags took 4 muscle relaxers, 6 pain pills, an Ativan, and countless park benches--But I go for my family. The kids ride & Jasen & I move from park bench to park bench. The doctors tell me that the walking around is good for me, and my pain should be better with movement--they lie. 

I want desperately to be old me...the one that was constantly going & could live off of 5 hrs sleep. The one who could turn up in the club until 2am and then house party after. The one who could do all of that and still wake up and fix my hair & makeup. The one who could ALWAYS be counted on to keep conversation going, and had all of the friends. 

Speaking of hair & makeup...the decision to stop wearing makeup isn't some feminist choice. It's because I literally just can't. I can't fix my hair like I want, because I can't keep my arms raised high for that long. And since my hair looks like I rolled out of bed most days, why bother with makeup? I look at pictures prefibro, and long for days when I looked put together. 

And the brain fog--dear god. I'm about a year from having a PhD & I forget where I'm going & why at least 4 times a week. I text Jasen to ask for words that I can't remember. I reword sentences because I can't think of the word I need & spelling...don't even get me started. I'm ashamed when I use the wrong word, or spell something incorrectly, because I almost have a PhD, and shouldn't be this dumb. (I'm much more patient with others who misspell than I am with myself.) 

And while everyone is cheering on my weightloss, the truth is that I'm terrified every time I lose another pound (like this morning) because I should not be losing still. Seriously. I eat ALL of the crap, I should not be losing, but I am, because my pancreas causes malabsorption, and my bariatric surgery causes malabsorption. The people on the CP boards are terrifying to look at, and I don't want to look like every pound lost is one pound closer. 

I make plans that I then have to cancel, because my body just can't do it. The people I hang out with the most are also chronic illness sufferers (in many different forms) because I've found that they get it in ways that healthy people don't. I know that I can text these people & say just kidding--my body sucks--and their feelings won't be hurt. I know that I can request that we chill at my house in our pjs, and they are cool with that too, because they too didn't want to get dressed. If I've invited you into my inner circle, it's because I've observed compassion and understanding from you.

And that snake oil you are selling...oh how I want it to work. I deeply desire an oil that will make my anxiety less, a drink that will clear my brain fog, a patch that will ease my pain. I would bankrupt us trying all of the things, but my doctors don't allow it, because any added product has the potential to counteract with my medications and cause organ failure. 

And speaking of bankruptcy... I want nothing more than to work a full-time job so we aren't living week to week. I want to pay bills without hoping there's money left for groceries. I'm honestly not sure I will ever work a full time job again. Not because I don't desperately want to, but because my body simply can't. There's a chance that I will finish my degree, and never be able to use it, as my body continues to fail me, and I continue to add diagnoses to my list. Every appointment, every new specialist, adds to my list and increases the daily anxiety I have about my body. 

I am reminded of Maya Angelou's poetry when I think of my life--"And still I rise." Although she was writing in regards to race, it seems applicable to life with chronic illness. I could lay in my bed drowning in the misery of chronic illness, but I choose not to---I choose to rise. I put one foot in front of the other, I celebrate my successes, I do my best not to drown in the anxiety and fear of how my body will betray me next. I rise. 

This is my new normal. 

Saturday, November 5, 2016

You do what you gotta do...

A few weeks ago, we received a phone call from my husband's sister. Her son was in trouble, and the judge asked if there was anyone else he could go live. 

We were the only option, so of course we said yes. 

Can we afford this? No. Are any of us in the mental health condition to add another mentally ill person to the mix? No. Is this going to be easy? Hell no!

But he's here, and we will do the best we can. 

Today marks one week. One veryyyy longggg weekkkk. In this week, we've dealt with things that neither of us have dealt with before, dealt with temper tantrums that Kali left behind when she was 5, fought with principals, read records from the last 5 years from his school, cried a little, laughed a little, but mostly, just wanted to fly to Michigan to kick my SIL's ass. 

Seriously. Kids don't end up like this without help from their parents. My heart hurts for this kiddo. 

So if you are the praying type, please pray, or just send good juju, because we need all of it that we can get. This has been very triggering for me, since my mom adopted me from my aunt. It has been stressful on Kali and her friend, Aiden, that has been staying with us, just because there are too many people in our house. Jasen and I have struggled in our marriage, because we are both struggling with adapting to the changes, and aren't completely sure how to parent a kid with ODD. 

What doesn't kill us makes us stronger, right?  

Thursday, September 8, 2016

World Suicide Prevention Day

With each year, my memories of him fade. He was only my dad for a tiny bit, before his mental illness enveloped him and he killed himself, so the lack of memories is understandable, although guilt provoking. 

I remember crawling into his lap in the recliner. I remember riding in the back of his truck. I especially remember getting my arse spanked after I 'decorated' the new, plywood seat that he built in the back of truck, so we weren't rolling around in the truck bed, with a crayon I had in my pocket. I remember the kindness in his eyes. I remember laughter and love. 

But, I also remember the weekend he sent my brother and I to our grandparents for the weekend and that by Sunday afternoon we were living next door at my aunt's house, because he had shot himself in the living room of our house and the carpet had to be replaced. 

It was only as I grew older that I learned that just the week before my mom had tried to get him mental health help at the local hospital, only to be turned away. And I learned that he left my adopted mom a card apologizing and telling her that she was strong enough to raise us without him. 

As I've aged, I vacillated from anger that my adopted dad didn't love me enough to stick around and immense sadness that he missed so much by that decision. But most of all, I'm heartbroken that he was so desperate and mentally ill that he REALLY believed that we'd be better off without him. 

Today is World Suicide Prevention Day. If you are struggling, tell someone. If you REALLY think the world would be better off without you, ask you children, your mom, your best friend, etc. for help. Suicide is never the answer. 

Wednesday, May 18, 2016

A number on a scale...

I've tried to measure my weightloss journey by accomplishments & not a number on a scale, but when people ask me what I've lost, I tend to give the #, instead of listing off things that I can do now, that I couldn't do prior to the DS. 

For example, after my surgery, my Fitbit recorded <2000 steps a day & days that had 2000 steps meant I was hurting & barely able to move. Now, my good days have a minimum of 2500 steps, but like today, I had almost 6000 steps & I'm not in bed wishing I was dead. While this may not seem like much to those who hit their 10,000 a day, it's a REALLY BIG THING, to reach that many steps, in a day. In fact, my dr's were ecstatic when I reached 2500 in a day, so the fact that I've gone from <10,000 steps in a week, to > 20,000 in a week is a big thing. 

Another accomplishment has to do with purses. I hadn't carried a purse in about 2 years, because my back dr said I didn't need any other pressure on my spine & because quite frankly, carrying a purse caused more pain. After surgery, I started bringing a purse with me, but I always left it in the car. But now...I can carry my cross body purse for much of the day without pain. 

Other accomplishments: 
Today, while shopping with Meg, I realized that I can shop in the 'regular' section of a store & not just the plus-sized section. 

My feet have gone down from an 81/2-9 to an 8. The same size I was when I got prego with Meg. 

I don't HAVE to nap everyday, in order to manage my pain. Instead, I get to nap when I want to, just for the sake of napping! And let's face it, everyone loves a good nap!

I mentioned shopping earlier, but in the 2 yrs since Fibro entered my life, I have gone shopping with Meg only a handful of times. Partially because shopping is overwhelming, but also because shopping increased my pain! Today, I shopped for several hours, with her, and only started hurting towards the end! (Shopping is one of Meg's love languages, but it's really about quality time, so being able to do this is huge!) 

I can cook dinner. 

I can clean my kitchen. 

I can do laundry-ish. 

I can sit anywhere, without worry that I'm going to break someone's chair. 

There are probably more accomplishments that I'm not thinking about, but I just wanted to share a bit  about what this journey has meant to me. It's so much more than a number on a scale.