Old dog learning new tricks...

A couple of years ago I lost a big portion of my hair due to pancreatitis, malabsorption, and rapid weight loss. When it grew back, IT GREW IN CURLY. I've repeatedly joked with my hair dresser Jess that I am simply too old to have to relearn how to fix my hair. Because let me tell you, learning what to do with this curly mess on my head has taken a lot of learning and most days it still ends up in a ponytail.

I decided tonight that much like relearning to fix my hair, I am going to have to be purposeful in how I learn to love this new body of mine. I had no real issues with self-love when I weighed 300 pounds. I was confident, funny, wore what I wanted, and didn't really care what others thought of my body. I said things like "thick thighs save lives" (whatever that means) and I reveled in my thickness. And then I got sick. Really, really sick. And all of my doctors assured me that the way to feel better was to lose weight. So naturally, I did what a good portion of obese people in the United States are doing... I had a portion of my stomach removed and my insides rearranged, so that I could lose the weight that my doctors assured me was killing me.

And I lost. I lost ALL of the weight--plus some. I lost so much weight that my bariatric surgeon had to go back in and reverse a portion of my original weight loss surgery. I am now thinner than I was in middle school, and even though 'thin is in' and 'nothing tastes as good as skinny feels,' I spend a lot of days trapped in my mind and loathing my body. 

Part of this loathing comes from the fact that losing the weight didn't actually cause my body to miraculously heal itself from that which ailed me, but the other part of it is that in my brain curves and thickness are beautiful. And I am neither curvy, nor thick. You can do the math from there. Additionally, skinny kinda hurts in that there is no padding between my bones and whatever surface I'm sitting on. I also struggle with maintaining my body temps, so swimming has happened exactly once this summer. When I've posted that I am swimming, what I've really meant is that I've sat on the edge of the pool begging people not to splash me. And don't even get me started on how many calories I have to consume just to maintain skinny. I've long struggled with 'forgetting to eat,' but now when I do it I get called things like 'anorexic' whereas before people said 'well you can afford to skip a few meals.' (Yes, people really said that.) I cannot afford to forget to eat any longer and its kindof annoying. 

With that said, to aid in this mental shift that I am attempting, there has been much therapy, but I also did a photo shoot for a friend who was building her portfolio. And y'all she made me look damn sexy. (Am I allowed to say that about myself?) Some of the pictures show the flaws that I am insecure about (like my saggy butt), but even those are still beautiful. Jessica did a fabulous job of showing me what other people see. (If you want her contact information let me know.) And for some reason, that has helped me see myself in a different light. I still long for my curves, and my padding, but I am starting to feel a little more confident in the skin I'm in. I am learning, or relearning, to love my body. But it will take time, just like learning to love my curves took time. 

I wrote this poem a little while ago--I'm not actually a poet--I just threw some words on the paper and I'm calling it poetry. It needs some finessing, but it shows what my brain process has been like these last few months as I've watched the body that I knew and loved slip away only to be replaced by bony edges. 

Curves Not Edges

Real women have curves…

Curves are sexier than skeletons… 

Thick thighs save lives…

Bones are for the dog; meat is for the man…

Thick girls are made for cuddling… 

Curves are beautiful… 

When life throws you curves, embrace them…

The thicker the thighs the sweeter the prize…

Curves not edges. 

Eat a sandwich… 

Do you ever eat anything…

You’d look so much better if you put meat on your bones…

I can see your bones…

Men like girls with a little meat on them…

I wish I had your problem…

Men love having something to hang onto…

Edges not curves.

Nothing tastes as good as curvy feels. 

Nothing tastes as good as skinny feels.

Which is it? Can it be both?

Curves and edges. 

Edges not curves

I grew up in a family of curvy women. And while my mom & grandma were never not on a diet of some sort, I learned that curves were to be celebrated. 

In high school & beyond I dated men that celebrated curves, much like society still does. ‘Dat ass tho’... something I hear frequently from the men around me. A celebration of curves. ‘Damn, she has a nice rack’... another celebration of curves. ‘Thick thighs save lives’...another celebration of curves. 

I no longer have curves. I have edges where my bones stick out. If you rub your fingers along my back you can count my ribs & each vertebra. Edges not curves.

I look angry all the time, because my edges can be seen in my face. Faces need curves to look happy to the general public. Edges not curves. 

My once voluptuous breasts fit nicely in a tank with a shelf bra. There may be an A cup of tissue left. When his hands grasp them his fingers can feel the edges behind my breasts. When I lay flat, my ribs and sternum stick up higher than my breasts as they become virtually nonexistent. Edges not curves. 

My once thick thighs no longer touch. Even when I flex, they do not touch. I will save no ones life with my thighs. Edges not curves. 

My ass is deflated. In its place are edges that shouldn’t be seen. My sacrum, my hip bones, my pelvis—edges that can be seen when I stand in front of the mirror after showering. Edges not curves. 

My husband doesn’t know this body, as he’s afraid he might break me when he grabs hold. He prefers curves and not edges. 

I do not know this body in which I reside. I do not like my edges. I miss my curves. 

Edges not curves. 

As my friend Dr. Laura  Ellingston reminded me this week, we should practice self-care, and kindness, even when failing. (Read her blog here: https://realisticallyeverafter.blog/2018/06/26/failing-better/ )

I’m currently really, really trying to be kind to myself and blogs like above and images like below help. 

Many of you know my struggles with being unable to stop my weight loss. While 

the topic is gtongue in cheek funny, and lots of 

people have said they wish they had my problem, what I know is that they really, really don’t want the problems I’ve had. For reference, I am almost 5’6”. At my prime, when I was healthy, full of muscle, with an 18 year old’s metabolism, I was 145, and a size 6-8. At my lowest weight, when I got home from my revision surgery, I weighed 113.3–At almost 5’6,” after having two children, after months of physical therapy to regain muscle, and strength, and at the age of 42, I weigh less than I did in late elementary school. 

The reality is that even though my BMI was fine, I had spent months being malnourished because of malabsorption. I was by medical definition wasting away, and the Internist who saw me in the hospital had a lot of words for me. I’ve lost muscle mass & tone, even in the midst of physical therapy, my skin was off colored, my eyes sunken, with bones protruding in ways that are comparable to cancer patients. But a lesser known issue with malnourishment for a long period of time is how it affects your brain.  

Our brains need fat, protein, carbs, and vitamins to work. All of the things I’ve been excessively malabsorbing for months. And let’s be honest here, my brain and I already struggle with getting along, because of the whole ADHD thing. But for months, and months, my brain has been starving, and it’s affected my brain functioning in ways I am only beginning to realize. 

According to these guys, (https://www.omicsonline.org/open-access/protein-malnutrition-and-brain-development-2168-975X-1000171.php?aid=55936) malnourishment can cause multiple brain function issues, and as I read through the symptoms I have realized that these symptoms were 100% affecting my abilities to be a wife, a mother, a friend, a teacher, but more importantly a grad student. 

As I read, I had tears streaming, because I just realized that maybe now I can actually finish school, because for the last 6 months I’ve daily thought I wasn’t smart enough to do this. I’ve beat myself up over missed deadlines, forgotten appointments, an inability to even read a journal article and annotate, but none of this is my fault & I need to be kind. 

I am absorbing more food since my revision surgery. I am not vomiting or running to the bathroom. I am holding onto food longer. But more importantly, over the last couple of days I feel like I’ve woken up from some type of brain fog that I didn’t know I was in. I can think again. I can read words, and understand them again. 

So if you’ve watched my journey & have thought ‘she’s just making excuses—get your shit done,’ or even said it to my face, just know that I’ve seen you and I hear you, and my ability to think is back, so you may want to steer clear from me for but, lest you get a tongue lashing. 

If you’ve watched and been supportive. I see you too, and I can never express my gratitude enough. 

I have edits to complete, grading to do, and a prospectus to write, and in the first time in at least 6 months I am positive that I can get this done before my advisor goes on sabbatical for the fall. 

I guess what I want to leave you with today, is to remind yourself that in the midst of chronic illness you must be kind to yourself. The opposite accomplished nothing. 

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.

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...

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: http://www.mayoclinic.org/diseases-conditions/heart-disease/in-depth/heart-disease/art-20046167 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. 

Life with chronic illness...

Watch this first: https://www.facebook.com/ChronicIllnessOnThemighty/videos/1405166782838399/ 

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 them...so 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. 

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?  

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. 

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. 

Firbronyalgia Awareness Day

In honor of Fibro awareness day, I'd like to give y'all a glimpse into a day of a person with Fibro. 

Every morning, I wake up & do a body inventory. I move from my head to my toes, and assess my pain levels. My pain is never not there, but some days, it's better than others. 

After I've done my body check, I slowly get up and make my way into the living room. 

After I've fully woken up, drank my protein shake, and tried to figure out what level of 'getting ready,' I'm up to. I no longer can shower, shave my legs, fix my hair & make up, and get dressed in twenty minutes, and oh how I miss those days. Instead, I shower and sit on the bed for 20-30 mins to recover from showering. Then I try to find the softest clothes I can wear, because anything scratchy causes my skin to hurt. Gone are the days of cute, trendy clothes, because cute, trendy clothes hurt. After I've gotten dressed, I have to rest again. By this point, my pain is creeping up & the fatigue that comes from pain means that I no longer have the energy to fix my hair, or even put make up on. Plus, all of the resting means that I don't actually have time to do those things, because I'm about to be late to work. 

If it's a work day, I try to get to school early, so that I can park near the building, because at this point, I'm so fatigued  from the pain, that there's no way that I can carry my purse and my book bag & walk across campus. And even if I am having a good day, and can handle the morning walk, by the time I'm done with work, I won't be able to walk back across campus to get to my car. 

My work shift involves a balance between moving just enough that I don't get stiff and not so much that I anger my body. Such a delicate balance. By the time I'm done with work, I'm usually done for the day, but that's not possible. 

From there, it's time to pick up Kali & get home, to figure out dinner and such. By this time, my pain is generally between a 6-8 on the pain scale and all I really want to do is sleep. 

Thankfully, Kali does great at helping me out & will cook dinner most nights. But nothing else typically gets done, because I simply can't. Which means Jasen & the girls get the brunt of the cooking and cleaning. (If it's not a work day and I don't waste energy on showering and getting dressed, I'm more likely to accomplish chores.) 

Each night, I fall into bed and do a body assessment. There's not been a single night, that my pain level hasn't been an 8 or higher, by this point in my day. 

This is my new normal. Everyone with Fibro has a different normal. Some are worse than I am, and some are better. Each Fibro experience is different. 

Happy Fibro awareness day! I wish I was blissfully unaware of Fibro. 

To the guy at the grocery store...

While I am not a mind reader, I am an expert in reading nonverbals, so don't think looking away quickly excuses you. I saw the looks, the rolled eyes, & the grimace. I cannot be positive as to if your complaint was the electric cart I was sitting in or the multiple cards used to pay for our groceries, so I'll address both. 

Firstly, the cart. I don't want to be in this cart. I want to walk freely behind a buggie, so that I can maneuver through the crowds of people, instead of being trapped behind people. I want to be able to decide how quickly I walk, instead of moving at a snails pace in this cart. (Although I have been reassured by my husband that the cart moves more quickly than I do, even on a good day.) I want to be able to grocery shop by myself, instead of bringing children who cannot anticipate my move and often get run over or a husband who is exhausted from his 60 hr work week. You see, I have fibromyalgia, osteoarthritis, and degenerative disc disease--all genetic, all life-changing and all cause limited mobility--so I am doing the best I can, in this stupid electric cart and could do without your judge mental states. 

As for the debit cards... I'm sorry that my use of multiple cards frustrates you. Here's the thing... While you were unloading your grocery basket full of groceries and pulling out your single card, I was frantically calculating the funds available, as the cost of 2 days worth of meals crossed the scanner. You see, those same ailments that require me to ride in this damn electric cart, also require me to be on thousands of dollars of medication and limit my ability to work a full-time job. My husband works his ass off, but like so many people, we live paycheck to paycheck and the last week of every month is always a stretch. Add to that the fact that child support hasn't come this week and frankly, is never regular enough to be counted on. So what you saw tonight was me using what little was left from child support last week, what was leftover from my makeup sales, and what was in my checking account, to buy my carefully selected groceries. Groceries that will last a couple of days, and aren't especially what the children want to eat, but were on sale. 

You probably will never see this post and maybe I misread your stares, but I cannot unsee the loathing in your eyes and you aren't the first to cross those lines. Tonight, I respond with writing, because I found myself to be speechless in the store. 

What? Everyone doesn't struggle with this?

<I literally never stopped crying while writing this. If it comes off as rude, I'm sorry. If it comes off as whiny, I'm sorry. If it comes off in any negative way, I'm sorry. Blogging is therapeutic for me. I enjoy writing. If there are typos, or grammar problems, please ignore them. It's hard to remember commas when you are a wreck.>

The last two days have been rough.

Like cry every 3 minutes rough. I joked about having myself admitted right along with her, but I'm not suicidal, I just can't stop crying.

I wish I weren't a crier. I wish I could keep everything bottled up, like a wine bottle with the cork tightly in place. Unfortunately, this bottle is open, the cork has been lost and I never seem to reach the end of the liquid, which would be fine, if it were actually wine and not some metaphor for the liquid that is streaming down my face and the snot that is making it difficult to breathe.

If you know me well, you know that I get angry when I cry. So imagine how I'm feeling about losing the damn cork. I. Need. This. To. Stop.

I can do all of the positive self-talk that my counselor has taught me. This will all be okay. Take one step at a time. You are doing the right thing. This isn't your fault. Breatheeeeeeeeee.

And still, the tears fall.

I can even try to logic myself into a state of peace:

LouLou (her nickname since early head-start) will be fine. They will adjust her medicine, she will move back over to Intensive Outpatient and come home at night. I will watch her like a hawk, to the point of annoying her. We will get her caught up in school, even if it means homeschooling. We will get past this.

And still I cry.

I cry for medical diagnoses for both her and her sister. Diagnoses that are genetic. Diagnoses that are life altering and barely manageable.

I will try to keep myself distracted today. Clean a little house, overcome my SPSS brainblock, convince people that their life will be better with Younique products in it (I mean, it's awesome makeup and a way you can help me buy groceries!), and I will use panda pop as a way to distract myself. But I imagine, I will still cry. And that's ok.

I've had a lot of people ask what they can do for LouLou and for us. Um... I have no answer. She wants coloring books and waterproof crayons, these ninja turtle leggings from wal-mart, and fuzzy socks. But I can get all of those things for her. She can't really have visitors and she still hasn't read all of the cards from her first visit to UBH, because she said "Idk why I'm so sad when I'm clearly loved!"

As for us... Jasen, Megan & I. I don't really know how to answer that. I'd like some stoppers for my tears ducts... do they make those? We could always use food or money. I mean, let's face it, all of these medical expenses are starting to pile up and you all know I'm not cooking, if I can't even remember to eat. (I've had 3 meals in 3 days!) And if you realllyyyy want to help, you can come clean my house or mop my floor... anyone? anyone? Dangit! :) But mostly, just the support and love that has been expressed through texts and messages, has been great. We will all get through this, one step at a time.

I will ask that you not use this time to try to sell me things that helped your uncle's cousin's sister. I don't need oils, and I have plexus and no, it doesn't help my fibro. Also, if you need to talk to me, text me. I will text back. I won't answer the phone, but I will text back.

But finally, and most importantly, please don't judge. I know plenty about the lives of those around me and I know that we all cope differently. Some eat, some drink, some smoke, some shop, some pray... and at one time or another, in my life, I've coped in those ways.

But today, I cry.

The Next Step

She's home. 

We've cried. We've laughed. We've eaten all of her favorite foods. I've bought her pretty much everything she's asked for and am not ashamed. 

Life looks normal from the outside. 

But it's not. 

Last night she slept on the couch until her sister got home. Then she crawled into bed with me and she's already asked if she could sleep with me tonight. She hasn't crawled into bed with me in over 6 years. 

This morning, I dropped her off at the IOP facility, instead of her high school. 

When she didn't reply to my text messages after school, it was all I could do not to pack my belongings and run out of statistics class. 

I told friends that I wanted to be a leach parent instead of a hovercraft parent. I want to latch on and never let go. But that is not what's best. I must walk this road with her, but I must allow her as much or as little autonomy as she wants/needs. Just like when she was little, climbing anything and everything. I couldn't keep her from climbing, so I just stood beside her and waited for her to hold out her hand and ask for help. 

When people have asked me how she is, I haven't really known how to reply. 'She's fine' is the answer that I think people want to hear, but the truth is, she's not. We have a handful of diagnoses and prescriptions that tell me that she's not fine and that we have a long road ahead of us. 

The IOP facility sent home a paper that resembles the forms sent home with preschoolers. The ones that say 'Your kid did _______ today". It seems appropriate, because recovery requires baby steps. There will be good days and bad. There will be tears and laughter. There will be times that she asks for things that I won't be ready to give. There will be learning. There will be growth. There will be healing. 

Over the last 10 days, a lot of people have reached out and recounted their own struggles with depression. Their stories have broken my heart, because very few had the support of the people around them. While I can't fix the past, I know that all of our stories together can help change the future. Together we can stop the stigma. Together we can change how we address mental illness. 

8 days...

The hospital called yesterday. We have a tentative release date for Wednesday. 

And by release, we mean drive across the parking lot to their intensive outpatient facilities, where she will immediately begin that program. 

While I am overjoyed that she will be home, the joy is tempered with the fact that this battle isn't over yet. This battle will never be over.

As proactive as I am regarding mental illness and stopping the stigma, I've noticed that I often refer to our looming diagnosis as "mental health issues," instead of mental illness. Why? Why not call a spade a spade? Because internally, I'm struggling with this. "Mental Health Issues" softens the blow. It implies that it will go away. Issues are something that can be worked out. Mediated. Issues go away. This will not. Mental illness is forever. 

And let's be honest, mental illness runs deep within our family tree. I have PTSD, panic disorder, depression. Her sister has OCD, anxiety, depression. Her father... well... Anywho... the roots run deep. But, so does the silence. It's deafening. 

I've had several people tell me that they are proud of me for being a voice for mental illness and for not being ashamed by what's 'going on'... again, softening of language. What is implied is that I am not ashamed of my child's struggle with mental illness. Hey, guess what? This stint in the hospital is killing me, but I am definitely not ashamed of my child's mental illness. This is not her fault anymore than her appendix was her fault. 

We will get through this in the same way we got through her 4 day stint in the hospital, last spring. We will ask questions. We will hold her when she cries. We will stand watch over her, to the detriment of my grades and Jasen's sleep schedule. Jasen and I will sacrifice whatever we need to sacrifice to give her the tools she needs to live with this mental illness. Because that's what good parents do. Because that's what good people do. 

[If your aren't a nerd, you  might want to skip the next paragraph.]

In all of my writing on this topic, I've noticed that I use a lot of 'war' references... "Mental illness is a battle" "[her] struggle with mental illness." I talk about mental illness like it's something to be fought against and won. Unfortunately, mental illness seems to be a lot like our country's time in the Middle East... never ending and not really won. Lives lost. Families mourning. Destruction. Ambushes. Failed attempts. Secrets. Silence. 

As a country, we need to make some changes to the stigma behind mental illness. We don't expect cancer patients to remain silent in the fight. In fact, every single time I see a doctor (which is a lot), they ask about our family history of cancer. I answer those questions with confidence, because I know that history. But if people were to ask about the family history of mental illness, I have only the diagnoses that I heard whispered about in the kitchen at my grandma's house (I was a nosy kid... what can I say?). "She was living in her car? OMG." "I tried to get him help, but the hospital turned him away." "Well, you know, her entire biological father's side had a drinking problem." "That woman is batshit crazy, but no one seems to be able to do anything about it." Ok... the last one might have come out of my own mouth a time or two. 

What if we lived in a world where mental illnesses weren't whispered about behind closed doors? What if we weren't afraid to say "_____________ is overwhelming for me and I need help"? What if friends asked how your were doing, without fear you might break with the norm and tell the truth? 

For the sake of my child and for others like her, can we please just stop the stigma? Can we talk about mental illness like we talk about any other illness? Can we be compassionate, instead of telling people to man up? Please? 

One Week...

One week. 

One week of tearful visits, daily phone calls, daily trips to drop off things needed. 

One week of guilt, questions, more questions, and tears. 

One week of praying to God, the gods, the universe. 

One week of fighting my own depression and anxiety in order to be able to function. 

One week since my baby was admitted and I miss her more than I'd ever thought possible. I know she's getting the help she needs and it's just a matter of finding the right combination of medication and therapy to help her dig her way out of the pit of despair. She didn't get there overnight and she's not going to be better overnight. 

There are several observations that I've made during this week, though: 

Friendship. I have her phone and 3 'friends' have texted to ask if she's ok---   she needs new friends. I have a great network of support, though. Friends that I know will be there always. Friends that have texted or messaged daily or semi-daily to ask how she is and how I am. Friends that sent her cards, fuzzy socks and a friend that even collected books for the unit, because she said the other girls were bored. 

Family: I have a large family and maybe it's just that they missed the post or don't want to bother me, but their silence speaks loudly. Her father called the unit once and they told him that they'd call him back, he didn't answer. I haven't heard from him since Wednesday. She's watching and again, silence speaks loudly.

People: I've watched other parents, as we've waited for visitation to start and as a previous medical assistant, but also a self-proclaimed 'expert' in nonverbals, I've learned a lot about people and have bit my tongue til it bled. Here goes... The lady at the desk is simply doing her job and you must follow the same rules that the rest of us have to follow. Yes, coming to visitation is kind of inconvenient, but it's your kid, put your damn cell phone in the locker and attend to your child's needs. Your transgendered child is perfect just the way he is and might be a little less depressed if you'd quit calling him by female pronouns. There is a serious need for family units, where you can check your entire family in and get help, because you sir are an egotistical ass and could use some therapy. There are a lot of parents that are simply overwhelmed by the mental health needs of their child...we should give parents more tools for their parenting toolbox, in this regard. Laughter sometimes helps. Blue eyeshadow has never looked good on anyone.

I could write a book on this topic and she's already talked about us doing that, when she gets out, because writing in therapeutic. This is my motivation to get my ass together and get caught up on my school work today. PhD Jess will have a greater voice than flunked out of school Jess. 

To those that have reached out, thank you. Your words have meant a lot. 

To those of you who are agast that I've put our business out there for the world to see, you are part of the problem. Mental illness is no different than those allergies you keep bitching about in your status posts. 

Mental Illness

I'm reluctant to write this blog, because of the stigma we place on mental health issues, but as with all of my life experiences, I feel like silence doesn't help anyone. 

As many of you know, I was diagnosed with PTSD, panic disorder and depression along with fibromyalgia, osteoarthritis & sleep apnea, a little over a year ago. I have spent the last year in counseling and under the care of numerous doctors. I am in a better place and can finally breathe again. 

With that said, the last year was hell and let's be honest, I checked out. I checked out of my marriage, school, friendships, but most importantly, I checked out of parenting. I simply couldn't cope with the everyday requirements of parenting two teenage daughters. Jasen took over what he could, but the rest got pushed aside. 

I am not passing judgement of myself, it simply is what it is. I did what I had to to survive and my kids got lost in the shuffle. I'm not the first or the last mom who's done this and quite frankly, if blame is to be placed, it would be on the people in my life who abused me emotionally, physically and sexually. A person can only take so much... 

Back to the issue at hand... 

The girls are both at difficult times in their lives. Meg is getting ready to graduate and go off to college. Kali is entering high school with all the social and educational stressors that involves. 

Because Meg is older and has a good network of support, she handled my checking out better than Kali. Meg was able to express her needs and learned when to ask for what she wanted. She also got a part-time job and a driver's license and quite frankly, hasn't needed me as much as her sister. 

Kali, on the other hand, needed me. She had her appendix out in May, along with several ovarian cysts and has had to have medication to help with hormone stuff. She's also had to navigate the social hell that was 8th grade and is now high school, without my words of wisdom. When she would start to talk about drama at school or girls that were bullies, I would check out, and we are now paying the consequences of my own 'checking out.'

Kali is creative, brilliant and beautiful, but she's also always had a tad of a dramatic side. This dramatic flare comes in handy for cheer, but is not especially useful in a house full of anxious people and a mother who is only here physically. After missing cheer tryouts, because of her appendix, we started to notice that she was floundering. 

Poor sleep habits, horrible diet choices, Netflix binging, mood swings, depression, self-chosen isolation and anxiety on top of her well documented ADHD made summer difficult and the start of school hell, this year. She's been struggling emotionally and educationally and once I woke up from my own depressive fog, I realized that she needed help. 

I took her in for a psych eval and another symptom was added to the list of symptoms that I had already noticed--suicidal thoughts, with a plan. The therapist, Jasen and I decided that an in house treatment plan would be best and she will stay, until they've figured out all the ins and outs of her specific mental health needs. 

Now here's the thing: When she sat in the hospital for 4 days, in excruciating pain, I posted frequently about her pains and her needs. She got cards and visits from her friends and it helped. But all of 10 people know where she is right now. Why is that? Why was it easier for me to post and ask for healing thought and prayers, when something wasn't quite right in her abdominal cavity, but I don't feel that I can do the same when the subject is mental health? Something about this isn't right. 

Kali will be fine and we will get her the care that she needs, but unless we break through the stigmas associated with mental health, she won't get the social support from loving family and friends that she also needs. If we don't aid our children in articulating their mental health needs, we create the perfect storm that has brought us to where Jasen, Meg, Kali and I are today. 

Mother's Day

It's Mother's Day! I've gotten better at handling this day (read this as not laying in the fetal position sobbing all day). But, there are always a few tears shed. Last night, I looked at Jasen and asked why my mommies didn't love me enough.

And that's really what it boils down to... Each of my mothers would likely say they loved me... But in all honesty, they didn't love me enough. 

While my bio mom would likely say that she wanted to give me a better life, the truth is, she didn't love me enough to get her shit together and be a mom. I get it. Self-esteem and self-worth issues, health problems, likely some PTSD herself... I get it. I really do get it, but getting it does absolve her from the tears I cry every Mother's Day, because my mom didn't choose me. 

My adoptive mom did her best too. Her life didn't exactly go as she had planned either. She fed me, clothed me, paid a shit ton for my screwed up mouth and sat up with me night after night as I passed gallstones. She did all the 'things' a mother was supposed to do. She was the opposite of my bio mom. She was strong and independent, with a 'I will be right attitude' and a stubborn streak. I needed those traits modeled for me, but I also needed love, compassion and forgiveness. Traits she probably had, but showed very little of to the outside world. Had I not divorced my ex, it's likely that my adoptive mom and I would have continued a cycle of 'me doing everything I could to please, but it never being enough'!  But I did get a divorce and what is, simply is. The truth is, at the end of the day, she didn't love me enough to move past my choices. 

Every week, I sit in counseling and we process my life and try to get me back to a highly functioning individual again (PTSD can suck it). But, what I've realized during my weekly sessions, is that I did 'learn' things from each of my mothers and not all of it was bad. I am strong. I am independent. I am emotionally accessible to my kids and husband (ok, ok, this is a work in progress)! 

But most importantly, I've stopped the cycle that was started generations ago. My daughters don't sit in dressing rooms crying, because I called them thunder thighs or some equally body shaming term. They don't tremble in fear, that there will be some outburst of yelling, when they have to tell me negative news. They come to me when they are scared and hurting, instead of hiding. We laugh and we love and we have an honest relationship, because I've stopped the cycle. 

They will be different mothers than I am, but I hope that when (and if) they have children of their own, they will continue to break the cycle. I hope that they see this meme and think positive thoughts about me and that they never doubt my love. And I hope they never have to question if I love them enough... 

Grief

One of my closest friend’s mom died today. She was diagnosed with lung cancer only a few months ago. She had been a smoker, but had stopped over 20 years ago. She died, not from the cancer, but because of the chemo and the weakening immune system that comes along with trying to kill the cancer within her body. She lost her battle. She fought hard; she still lost the battle. She leaves behind my friend (her only child), she leaves behind her husband and she leaves behind hundreds of people whom she touched with her kindness and generosity. Even I am grieving her loss and I barely knew her. I know that my friend is strong enough to deal with the death of her mother. She has people around her that love her and will hold her up. I want to be there, but I can’t. I have responsibilities to attend to here in Denton. But it doesn't lessen the heartache I feel for my friend or my desire to throw some clothes on and drive to Abilene for the week.

As I sit here sobbing, I think of my husband, who smoked for 20 years and still uses a vaporizer to get his nicotine fix. I think of his grandmother who died from emphysema and probably COPD, although he says it was working in the tanning factory and not the smoking that caused it. Will I be standing beside a hospital bed 20 years from now watching him take his last breath?

I also sit here sobbing, because I miss my mom. Would I even know if she were in a hospital bed crying? Would anyone think to inform me? When she chose my ex-husband over me, I wonder if she considered these things… or was she just stuck on being right and nothing else mattered. I wonder if she thinks of me now. I think of her often, especially since the pending fibromyalgia diagnosis and the difficulties that has caused and there are days that I simply want my mom. I don’t know how to fix any of this, though. 

Sigh. 

Class

Last night, in the Family Violence course that I'm taking, we spent the last 30 minutes talking about protective orders and the atrocities the women in the study had experienced before they filed for a protective order. That was the longest 30 minutes of my life.

I came home from class and cried. I cried when I went to bed. I've cried 3 times today. I'm a mess. I'm not surprised, but I had hoped I would be stronger than this. I had hoped that my YEARS of counseling would protect me from the flashbacks and the fear. It hasn't worked.

I'm the little girl in the corner, naked and afraid, while my Mom's boyfriend prepares the plywood paddle to beat me with, all over again. I'm the teenage girl being pulled out of my shower by my hair, because I snuck a boy into the house (even though nothing happened with the boy) all over again. I'm the wife watching as my husband throws a lamp at the wall above the crib, where my infant sleeps, all over again. I'm the victim. All. Over. Again.

I have isolated myself from each of the above people. I do not see them. I do not talk to them. I don't not think of them, much. But in a 30 minute lecture, all of the hard work I've done to be strong and move on was undone.

No amount of counseling, self-help literature, prayer or meditation can undo the damage those people did to me. I'm broken. I will likely always be broken. I get it. I don't like it, but I get it. I am an example of why family violence intervention is important. I am an example of what happens when the system doesn't intervene. But mostly, I'm an example of what happens when families keep secrets.

Three more weeks of class... I can do this.



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