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.