Tag Archives: nuggets of truth

The Institutional Gaslighting Has To Stop

Posted in Just Life. by

It’s Week 46 of my writer’s group. Today, I’m supposed to be writing about my DREAM day… but I can’t, because I’m too upset by reality.

To catch anyone up who isn’t aware of our situation: Adam has been unemployed, caring for me and the kids since the week Gabrielle was born in April 2020. When he let HR know that I was being induced, within 24 hours, they fired him rather than giving him the paid paternity leave he had earned. Adam started collecting unemployment, which had a federal pandemic bump that kept us afloat. All unemployment benefits ended at the beginning of September. We are currently living off of our savings, WIC benefits, and less than $800/mo from SSDI.

So, October 26, we received letters from IDHS telling us that our kids were being moved to the Medicaid insurance plan that doesn’t actually pay for anything and that Adam has a spenddown of $150K before he gets any medical benefits. Of course, we’re also denied for SNAP. I’m denied Medicaid at all.  The notice of decision was dated August 8!  So, we received the notice after all possibility for appeal had passed.

Adam called and spoke with a manager who said that we told them that we have $150K in stocks (We don’t!), and that we missed the window for appeal.  Essentially, what happened was that someone on their side of things COMPLETELY FABRICATED A FORTUNE for us and used the fake fortune to deny us our social safety net — and then sent us the notice of denial at a time that was too late to take action against.

Like, the levels of abuse there are manifold: 

  1. Saying we said something we didn’t say in a document that has perjury standards in court.
  2. Denying us food and medical aid based on that fabrication,
  3. Letting us know we were denied a full month after it’s too late to address the problem.
  4. Admitting on the phone that someone must have made a typo, but there’s nothing that can be done.
  5. Telling us the best way to fix things is to apply again, as though someone’s not going to go right behind us and fabricate stuff later.

I want to say this loudly, so that everyone can hear my frustration: WE ARE BEING DENIED FOOD AND MEDICAL CARE BECAUSE SOMEONE MADE A TYPO — AND WERE TOLD THERE IS NOTHING WE CAN DO ABOUT IT OTHER THAN APPLY AGAIN.

THAT IS NOT OKAY.

If it were the first time that I was dealing with IDHS gaslighting in this specific way, I would just apply again and say, “Well, accidents happen!” But this sort of thing has happened more than once. I do not believe that it is an accident, and I wonder why no one has alerted the press. I wonder if I need to be that person.

In earlier years, I have helped my in-laws apply for assistance. Despite meticulous calculations, sending all documentation in hard copy, certified, with return receipt — we saw the same sort of shenanigans with them.  IDHS denied them medical help and SNAP while my father-in-law was dealing with lung cancer because they decided that, even though my in-laws reported over $1000 a month in medical expenses (Remember: Medicare can’t negotiate drug prices!), they had $0 in medical expenses. (Fabrication!) And, just like with us, the notices were not delivered by USPS in a timely manner and had NO TIME STAMP on the envelope on delivery day.

I have gotten to this point, as a person with a law degree who is suffering from chronic illness and poverty, where I wonder if there is any point even asking for help… Advocating for myself and others has become almost impossible because I don’t know how the people who are supposed to help are actually going to fuck us — I just know that they are.

I mean, my baby is on WIC (which gives us a small amount of food for her), and it just cost us more than $300 out of pocket to get her 18 month shots — shots that must happen for her to receive those WIC benefits or attend public school. (Someone make that make sense to me! If a shot is required for something that the public has mandated as necessary, like school, why on earth are we paying out of pocket for it?)

Anyway, my point in writing this isn’t to ask anybody to help us out or just to vent. We are doing well enough in this moment. We have our house. We own our car outright. We have food. We have a plan of attack for increasing future income. My point — my whole reason for writing this — is that healthy people believe that our social safety net both exists and is functioning properly. It is not.

I do not have a solution. I will apply for government help again and hope that this time, we are not victims of a corrupted system. Adam will continue to apply for work, as he has this whole time, and I will continue to do what I can online to involve us in Mutual Aid. We, as a family, will continue to do what we need to do to survive. It’s the only option. I just can’t do it quietly.

I suppose my dream day is one when we can trust our institutions to function as they were intended, for the betterment of us all.

Resistance Training

Posted in Just Life. by

I’m sitting here, during week 42 of my writer’s group – one that has occurred in the same week as the 42nd anniversary of Douglas Adams’s Hitchhiker’s Guide to the Galaxy (a work of comedic fiction that I deeply appreciate) – and am having to fight off the urge to be quiet… because quiet doesn’t entertain anyone, myself included.

It doesn’t help that there are several people tugging at me for attention. Taking the hour every week to check in with a small social circle and then sit and write, with purpose, for a short period of time? It’s one of the most important parts of my self care routine. In fact, without it, I wonder sometimes whether I am a self or just RoboMommy. (I am programmed to love, beep borp!)

That is, of course, nonsense. But it’s the kind of nonsense that overwhelmed parents of small children think and then have to refute. I find, more and more lately, that I spend an inordinate amount of time and energy correcting my initial thoughts/reactions to pretty much everything in life. And that is exhausting in part because it is literally always met with internal resistance.

The thinking goes: your initial automatic thought is your conditioned response. Your response to that response is your true self. And so giving yourself a pause – even just a deep breath to let yourself consider things when you’re about to address a situation with a toddler can make a huge difference, not only in your response and ability to tolerate behavior and discomfort, but also in programming your baby’s self esteem.

Asking yourself, several times a day, “Is this something we can clean up/fix easily? Then don’t sweat it!” is simultaneously very helpful and very tiresome. This is, in no small part, due to the messes that inevitably are a part of this dance of acceptance. As someone who struggles with executive dysfunction thanks to neurological and psychological disorders, things can get unwieldy. And the guilt that accompanies unmet personal expectations can feel very impossibly heavy. 

I’ve started to wonder, honestly, how anyone keeps their home clean with a toddler. I’ve decided they don’t. At least, not if they’re in our position, on month 19 of covid lockdown with no help with child care. The idea of a clean home? It’s a myth. It’s social conditioning. It’s not real. Clean homes are ones that aren’t being used for living. The only way to keep them clean is to keep everyone out of them.

And so, I’m trying extra hard to let go of the stress and negative self judgment that I constantly feel internally. I’ve been following KC Davis on TikTok, and she keeps stressing that “care tasks” (the evil formerly known as “chores”) are morally neutral. Reframing spaces as “functional” or “nonfunctional” instead of “clean” or “dirty” has given me the ability to take a break from the internal self-flagellation.

WORDS HAVE POWER.

That’s part of the reason I’m so excited my friend Liz is starting a literary magazine featuring the work of fellow Jewish authors. She’s just opened submissions, and I have til Halloween to send her some poetry.

I wonder if all artists, when called to submit something, wonder if they should just craft something new or find something they’ve already created to polish. I wonder how many times William Shakespeare retooled a sonnet just to try to get laid or to pay for his rent.


Being a content creator is so weird. Like, I know I’m just a vessel for whatever comes out of me. And if I don’t submit or publish, nobody else gets to experience the art. But also, that requires me to legitimize my own work.

Yep. You heard me. For any artist to succeed, they must self-validate.

I think that’s why the act of submitting works has been something I’ve felt intolerable resistance to. I’m not sure which thing feels worse: asking someone to judge your work (the act of which is both subjective and bile inducing in its consideration) or not asking someone to judge your work (and therefore allowing it to die on the page).

What’s always harrowing is wondering who is judging your work and why their opinion matters (or should matter) to you. At least in this situation, a dear friend is starting a passion project. I’d be a fool not to show her my support by participating.

BTW – if you are also a writer and Jewish, and you want more information about her project, ping me. I will absolutely get you connected.

Anyway! The point of this post was supposed to be about how challenging your resistance is almost always the way forward. I totally forgot to write the paragraph about how resistance training works in bodybuilding. lol. Whoops. If you know, you know. And if you don’t, now you do.

Right now, I’m resisting some necessary self care. I need to go make myself eat lunch. I’m taking way more time than I intended, writing this, and Adam’s being a very good sport about it.

I hope you have a good week. I aim to write more next Friday. I’m also strongly considering starting at the beginning of the Tao again and seeing how it hits at this phase of life. ❤ Not sure why I feel a transition so strongly on the horizon… but I do.

Out Of Control, And That’s OK

Posted in Dudeism, Just Life. by

There’s been a lot going on recently that has been anxiety-producing…an unusual amount of mass murder, a trainwreck of a political circus, and, of course, personal stuff.  There are so many things that I would change if I could. The inherent unfairness of life weighs on my spirit.  I desperately want to help make the world a better place — or at least a kinder one… but I am one Rachael. I can only do so much.

I cannot:

  • Stop complete strangers from shooting, stabbing, or running over people.
  • End systemic racism.
  • Fix end-stage capitalism or neo-feudalism.
  • Make the geopolitical landscape either make sense or work the way that I want it to.
  • Force anybody’s political ideals or morals to match my own.
  • Make any decisions about American domestic or foreign policy.
  • Disarm all the nuclear bombs in the world.
  • Make teething less painful for my son.
  • Force the higher-ups at anyone’s place of employment to make wise decisions for the health and morale of their workers.
  • Make it any easier or more fun for anyone to look for a job.
  • Know whether or not the estriol treatment is having a positive effect on my MS.
  • Know whether or not it would be more beneficial for me to get back on Copaxone or if I should try to convince my neurologist to let me try Lemtrada or Ocrevus… or if I should just keep doing Vitamin D and estriol.
  • Know when the optimal time actually is to have a second child. (I have been thinking about this particular question way too much recently.)
  • Make Humana stop messing up my medical billing from over a year ago.
  • Make the muscles in my arms and legs stop randomly, painfully spasming (though cannabis does a good job of quieting it down for a few hours at a time)
  • Cure MS or seizure disorder… or any other medical condition, for that matter.
  • Blow thousands of dollars and hire a full staff.  All I want is a maid, a gardener, a contractor to renovate our home, a nanny, a full-time driver, and an on-call masseuse, so that I can get all the things done that I feel need to be done. Totally reasonable, right?

Panic and despair don’t help anything, and no one else can “fix” life either.

relax

I recognize that I’m not helpless to be at the effect of these worries and situations.

I can:

  • Meditate and let the fear pass.
  • Exercise.
  • Take all my prescribed medicines as scheduled.
  • Talk with my therapist when I need to.
  • Hold my baby tight, love him with all my heart, and teach him to be compassionate to himself and others.
  • Do as much housework as possible to help relieve some stress for my husband while also showing myself in a clear way that I make a visible difference in the world around me.
  • Make healthy food choices for my family.
  • Comfort friends who are sad.
  • Find a way to compliment or show appreciation to every person I talk to.
  • Make music and art.
  • Share my experiences so that others who face similar challenges don’t feel so alone.
  • Be an ally, an advocate, and involve myself in the community
  • Do my best to both give myself credit for what I already do and still be ambitious.
  • Choose optimism.
  • Focus on gratitude.
  • Consciously look for the good in life.
  • Remember that I don’t have to read my FB newsfeed like it’s my part-time job. I don’t need to internalize anyone else’s stress.

My mantra for the last few weeks has been this, and it’s serving me very well:

doit

 

 

Good Enough.

Posted in Just Life. by

Well, 6:30 a.m. rolled around this morning, and Henry decided that since Daddy was very obviously awake, he needed to be doing things too.  I would still be cranky about this if not for the fact that he is, mercifully, napping right now, which puts us on schedule for him to attend a Gymboree class at 12:30, assuming it doesn’t rain.

You know, life is funny. When you’re little, you rage against naps and against sleep. Fear of missing out is so strong that you can’t even comprehend why your parents want you to rest.  As a grown up,  I know that what I’m actually missing out on most of the time is… a restful nap.

The irony that I could be taking one right now instead of writing is not lost on me.

Ghosts of the Past

Social media never ceases to amaze me. Several days ago, I got a friend request from someone who used to be my best friend in the whole world.  When I say “used to be,” I mean that it’s been 25 years since I last saw her. We went to elementary school together, and after my family moved to Collierville, for all intents and purposes, I never saw anyone from elementary school again, and I was more than okay with that.

See, I went to a prestigious (read “snobby”) private school.  From 2nd-6th grade, my daily thought processes were consumed not primarily with learning, but rather, with an unrelenting psychological struggle for acceptance. On the one hand, I would desperately try to convince a bunch of rich little girls that I deserved acceptance, despite being of a different religion and socioeconomic background than almost all of them — and on the other, I would desperately try to convince myself that their acceptance was completely meaningless and empty.

In my ideal imaginary world, where I never ended up with MS or seizure disorder, I’d have made my mark by now as a rich and powerful entertainment attorney who also just happened to be happily married, beautiful as an adult, and energetic enough that I could still perform music on the weekends — you know, just for fun.  I could totally talk to the girls I grew up with and be like, “See. I am your people. Aren’t you glad you grew up with me now?”

…but I’m not.

I’m a disabled stay-at-home-mom who writes sporadically and doesn’t wear pink on Wednesdays. Mercifully, I’ve not only come to terms with that, but I’m actually pretty proud of it. It took years to get healthy enough to have Henry, and it takes concerted effort to carve out time to write.

Surprisingly enough, after I accepted her friend request, I found myself worrying about whether or not my life was “good enough.”  I openly questioned whether this person genuinely wanted to rekindle a long-lost friendship or if she was going to be headed to a reunion and she wanted some good gossip for everyone.

A day later, another elementary school classmate requested friendship, and I had to really consider whether or not I was going to accept.  It’s not like this request was from a former bully. This woman was the nicest (and prettiest) girl in class, and I didn’t even have an inkling of bad intention on her part — which really gave me pause.

In that moment, it hit me square in the face just how toxic and deep my shame is over the direction my life took after I was diagnosed with seizure disorder… and I had to figure out both why I was shaming myself and what I could do about it. My life is not a trainwreck people can’t help but stop to look at. It’s performance art.

Turns out that despite all of my years of growth as a person, my inner child is still classist, ableist, and misogynistic. She attended enough ballet classes, watched enough TV, and read enough magazines to know that she’s only pretty if she’s thin, important if she’s rich or in a position to help someone else social climb, and worthwhile as a person if she’s “contributing to society” through paid work, glamour, or widely-accepted art or music.

It’s a damn good thing that I’ve grown past those old ways of thinking as an adult.

So Much More Than Good Enough.

I accepted both friend requests, and I’m glad I did. It’s cool to know that my old bestie and the girl I was most impressed with while growing up actually care to know me as an adult. I’m curious to see who they’ve become too!  We’re all mommies now. That alone changes you a lot.

It’s even cooler to know that the good side of my early-life struggle finally won out. I give zero fucks about what other people think of me at this point. I would actually give negative fucks if that were possible. (Like, my fuck deficiency is so pronounced that I could really use some of yours. I might have to declare fuck bankruptcy.)  I’m also entirely certain that my father, upon reading this, will pump his fist in the air, and think, “That’s my girl.”

What matters is what I think of myself… and my record for awesomeness is pretty good. I’m well educated in interesting topics. I’m relentless in the pursuit of bettering myself as a person. I engage in community service, and I make an effort to have fun too. I’m raising a kid who’s not a little asshole, and my husband still grabs my butt after 10 years.

Altogether, I know that I am more than “good enough” for myself, even if I have to remind my insecure inner child of that. I try hard to be the kind of person I’d want to hang out with. And sometimes, that person needs to be someone who reminds you of how special you are.

I’m happy that these very old friends unintentionally gave me the opportunity to take a good hard look at the life I’m leading. I’m even happier with what I saw… because, really, how could I be anything but happy when I get to see this face all day?

hugabug1

 

And today I’m fine. (So far.)

Posted in Just Life., Uncategorized by

MS is so weird. One day, I’m damn near immobilized by fatigue and seizures, and the next, I’m feeling great and am having a genuine debate as to whether it’s smarter for me to blog or fold and put away ALL. THE. THINGS. (It can’t be some of the laundry. That’s just not enough. I’m adulting so hard today!)

fold

Happiness > Folded Laundry

Of course, since you’re reading this, you know what choice I’ve made. Surely, I’ll make a dent in the mountain of clean laundry at some point today, but I felt like writing was a better use of the short time that I have while Henry naps.  Why?  Because writing is one thing that makes me genuinely happy, even if I’m writing about tough stuff… and if I don’t do simple things that make me happy, I have no one to blame but myself.

I think that’s one of the hardest things about being a SAHP (Stay-At-Home Parent, for the uninitiated). It’s way too easy to spend the entire day focusing on your child’s needs and housekeeping and to completely neglect yourself.

If you can sing every jingle from every Daniel Tiger episode, but you haven’t listened to a new release from one of your favorite artists that was released almost a year ago (like this one for me), you just might have your priorities slightly out of whack. (And that’s ok.  Friends help each other. Yes, they do. It’s true!)

If you don’t carve out time for things that make you smile, you can become overwhelmed and sad so easily. Heck, when I first started this gig, I had to set alarms to remind myself to eat (Ok, I’ll be honest. I still use those alarms.) and take showers. (More than 1 a week! It’s important!)

After going back to therapy, this time for postpartum depression, I realized something: I’m doing a fantastic job of challenging automatic negative thoughts… but I’m doing a crap job of giving myself credit for the things I do and an even worse job of having fun.

A thought really struck me hard the other day — Henry is learning how to be a person from watching me.  If I don’t do things that make me happy, I’m teaching him (by example) how to be miserable. We can’t have that. I refuse.

domorehappy

So, I’m gonna keep doing my best to show him that you rest when you feel bad, and you do whatever you can when you’re feeling well.

On that note, I’ll be busting out the guitar this week…finally bringing it out of retirement. It’s been almost a year and a half now since I played. (Baby belly bumps get in the way!)  I’m not expecting that it’ll sound particularly good — but something is so much better than nothing. I’ve been thinking about it for weeks now, and I think he’s finally at an age where I could play it and he wouldn’t automatically try to wrestle it away from me.

Truth be told, I miss parts of my identity from before I became a mommy… from before MS made my life wonky… from before I stopped thinking that I could be and do anything I wanted to do be and do. It’s time for that thinking to end. My mindset is in my control. Self-empowerment is about owning your bullshit and choosing to powerfully move past it.  You can’t be proud of yourself and be mired in self-pity at the same time.

How do you kick self-pity’s ass?  Gratitude and credit.

The Sticker List

Y’all have heard me talk about how important Gratitude Rampages are, and how you can rewire your brain to be more positive by writing down 3 great things that happened yesterday, every day.  Well, we can add another exercise — one that I made up myself that is helping me out loads.  The Sticker List.

What’s “The Sticker List?”  It’s a simple list of everything that you believe you deserve a sticker for.  See, we give kids stickers (or other little treats) when they behave well, in an effort to give them positive feedback and attention so that they will develop good habits. Some kids gets stickers for using the potty. Others get them for brushing their teeth or doing basic chores.

Today, I believe I deserve a sticker because I’ve chosen to write… and I think I probably also deserve a sticker for:

  • changing 3 poopy diapers before noon
  • remembering to take all of my morning meds
  • eating within an hour of waking up
  • not being ashamed of sharing this. 🙂

It’s like a to-do list in reverse… a “Done” list, if you will.

poopsticker

This would be the sticker I would give myself for changing diapers. Have you ever seen such a happy crap?

And, now that I’ve shared this, I actually want to go fold clothes. (Who am I becoming?!?)

Hope you’re all having a wonderful day. ❤

 

Too many thoughts not to blog.

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

It’s been a couple of months since I last wrote. Being a mommy makes finding time to sit down at the computer tough. If FB and text wasn’t available on cell phones, I probably wouldn’t communicate with anyone other than Adam and my mom.

I just put Henry down for his nap, and even though I know I should go lie down too, I feel the need to write – so that’s what I’m doing.

There are sick people in this world. I’m one of them.

Truth be told, I’m feeling pretty rough today. My stomach is hurting really badly… like I swallowed something that’s eating me away from the inside. I’ve been having a hard time making myself eat or drink for the last 2-3 days, but I’ve been forcing myself.  Today, my stomach is hurting all the time, whether I’ve eaten or not. I’m debating making another appointment with my gastro team.

There’s definitely something amiss, and I’m becoming increasingly confident that it’s more than fatty liver. Last time I saw them, they ordered extra tests for immunology, and it turns out that I’m so deficient in immunoglobulin that they want me to see an immunologist.  That news was delivered to me a couple of weeks ago… and I’ve been waiting for their letter to arrive in the mail with their referral. That’s right, I haven’t made an appointment yet. I keep thinking this stupid thought: “Well, my MS is not progressing on MRI, so it’s probably a good thing that my immune system isn’t working right.”

Stupid. Ignoring health matters never makes them improve.

Today, my left foot is all tingles, the tops of my legs and my lower back feel like they’re on fire, most of my left chest is numb, and I am achy all over (on top of the tummy ache and headache).  Because it’s my special lady time, I’m inclined to just suck it up and bet that this is a pseudoexacerbation – but if it doesn’t go away in 2 days, I’ll call my neurologist and request steroids. I can’t not request steroids when I start having time travel (complex) seizures for more than 2 days.

Who needs The Doctor?

Yesterday, I “traveled” again… and the results were simultaneously eye-opening to me about myself and how badly I still need to work on self-compassion and how totally bizarre our world is at the moment.

See, yesterday, I woke up thinking it was 2009 and that I was supposed to take the bar exam in a couple of weeks.  The first thing I did, (Again, stupidly. There’s a theme here.) is check Facebook and try to get my bearings, since I was aware that I was dealing with post-ictal confusion.

This lead to me reading about the latest Supreme Court move that guts the 4th Amendment (Seriously, the damage to our civil rights that have happened in the last 30 years is staggering.), followed by a ton of people debating the 2nd amendment (Who honestly cares about the right to bear arms when our military is so big we could never hope to use force to overcome martial law at home? Or when cops can stop you for no reason at all just to check your status?  “Papers, please?” anyone?), followed by a ton of Donald Trump/Hitler comparison memes.

This was going on while my kid was alternating between eating crackers and throwing them at the dog. That was much less of a shitshow than the discourse I saw on Facebook.

And you wanna know what upset me? That I very clearly wasn’t an attorney. That I wasn’t doing more to fix things that are out of my control. (Our country is basically a fascist oligarchy at this point. I can’t undo that by myself, much as I wish I could.)

And then, I got angry that I’m not doing enough to fix things that are in my control. My house is too messy, and I was not ok with that… or the fact that I have no one that I can call to help me with the baby when this shit happens. Or that my husband works so far from home that even if he were able to leave work at the drop of a hat, it would be at least an hour before he’s here.

Essentially, yesterday, I realized that the world is on fire, and I am walking a tight-rope without a safety net. And I got very angry with myself for that… but anger doesn’t help anything.

I deserve to be able to call someone to be with me and Henry when I am having complex seizures.  And if that means that I need to interview strangers and hire a damn babysitter, even if Adam doesn’t think anyone can handle my seizures but him, that’s what I’m going to have to do. Henry and I deserve at least some measure of security.

Grateful.

Of course, all this emotional upset is pointless. Yesterday, we were safe. Henry spent a little more time in the pack and play than he would have liked, but he had toys and TV, and he enjoyed a lot of roughhousing with Daddy when he got home. I listened to my postictal playlist and “came back” pretty quickly — in less than a half hour, which is pretty great. I didn’t have any more complex seizures the rest of the day. Calling someone to come over would have been completely pointless.

So, who the fuck knows what the right thing is to do? I’m just grateful this doesn’t happen all the time.  Heck, last week, I was doing so well that I was able to take Henry to Gymboree every day. This week… not so much. But that’s life. You just gotta roll with it.

If you’re feeling well today, I strongly urge you to find something you can do, using your body and your good health, that will make you feel proud of yourself. Be active, and enjoy it. Exercise. Clean. Volunteer. Have awesome sex. Eat spicy foods. Go to a dance club filled with strobe lights. Watch a visually-intense movie at a theater. Drive wherever the wind takes you. Swim in the deep end. Nobody knows how long their good health will hold out, and those of us who deal with the crazy ups and downs of having multiple chronic illnesses hate to see anybody not enjoying that gift.

Carpe the shit out of this diem, people. It only happens once.

yolopug

News of the Rae

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

Today, I was thinking about how much I miss actively participating on LiveJournal. What I really have been missing is reading about what’s actually going on in my friends’ lives (as opposed to looking at memes about politics, sarcasm, and incorrect grammar), and writing about what’s going on in mine.  Twitter and FB are absolute shit for emotionally meaningful communication, and the only way for me to remedy things is to do some writing myself and to reach out to friends on the phone or Skype.

Medical Insurance Is A Lot Of Work

This week has been fucking crazy. I’ve gotten calls from almost every medical care provider I’ve worked with in the last 3 years because Humana was given incorrect information by BCBS of MN with regard to my coverage, and they sent out letters to those providers requesting a refund of the money they paid for my medical care.  You can just imagine how many providers I’ve seen in 3 years with my health being the way it is. Needless to say, a tiny mistake turned into a ridiculous clusterfuck (and one hellacious panic attack) for me.

See, BCBS does identification numbers weird.  Our family has 1 identification number and 3 member numbers, one for each of us. When CMS (Centers for Medicare & Medicaid Services) and Humana asked BCBS how long I’d had coverage, they only provided the identification number (because, apparently, all the other insurance companies have unique identification numbers for each person), without knowing that there were 3 members under that number. This lead to a simple, but unfortunately large, misunderstanding, since Adam’s had BCBS since 2011. It also lead to about 30 minutes of actual talking and 4 hours of sitting on hold to clear this shit up.

insurance

So accurate that it hurts.

In the end, it all boiled down to BCBS needing to fax a letter to both Humana and CMS letting them know that my coverage only started in January of this year. I just had to call back and forth between the different organizations and talk to different CSRs, explaining the situation over and over again. (For the record – customer service at BCBS is much faster to get a hold of and to work with than that at Humana.)

But I learned important things!  Like that every insurance company has a department devoted to the coordination of benefits, and that if you are on Medicare or Medicaid and you purchase private insurance or change providers, you absolutely must call CMS (at 1-855-798-2627) and also let their coordination of benefits department know, so your billing doesn’t get all jacked up.

I also learned that if you have Medicare (or Medicaid), and you choose to purchase another policy from a private insurance company, then the private insurance will always be your primary insurance, and Medicare (or Medicaid, or whatever other state-based insurance) will be your secondary.

Pharmaceutical-Grade Supplements Are Totally Worth It (For Me).

Also filed under “crazy” this week (but in the crazy GOOD category), I weighed myself after 2 weeks on the diet and supplement regimen prescribed to me by the endocrinologist I saw at BodyLogicMD.  I lost 7 pounds!  That’s a tenth of how much I want to lose, and it happened without any frustration.

This may not seem like the biggest deal in the world to anybody but me, but I seriously have been trying to lose weight for years with no success. I went paleo for months at a time. I weightlifted. I tried South Beach. I tried doubling my cardio. I tried calorie restriction, eating 1000 calories a day or less for a couple of weeks.  I  GOT PREGNANT AND HAD A BABY, and still had no change. (I seriously gained a total of 18 pounds with the pregnancy and lost 10 of it when Henry came out, and went right back to the same weight I had started at within a week.)

But now, I have movement on the scale, and all I’ve been doing is taking the supplements (prescribed based on deficiencies that showed up in my bloodwork), eating small meals every 3 hours (just like during pregnancy), drinking at least 64 oz of water a day, and not eating bread or pasta. I’ve been eating rice. I’ve been eating potatoes. I haven’t been working out. And the weight just  disappeared.

Another bonus: I have a ton of energy that I haven’t had in years. It’s amazing to me. I didn’t even expect that it would affect my fatigue… but it has.  There have been days where I didn’t even feel like I have MS. I mean, I went 2 whole weeks without an energy drink, or even 2 cups of coffee.  I don’t think that’s happened in the last 10 years.

But What About BioIdentical Hormones?

The doc at BodyLogicMD also prescribed me some bioidentical hormones to help with MS and seizures.

Based on the studies on estriol that have come out of UCLA, she put me on an estriol cream. It looks like it should be as effective at staving off relapses as Copaxone, at least for the first year.  I start it tomorrow.  I’m hopeful that it will be just as good as a DMD.

I’ve been very lucky not to have any progression since coming off Gilenya in February of 2014 to conceive Henry.  Dr. Javed wants me back on something if we’re not actively trying to conceive, but I have yet to try a disease-modifying drug for MS that isn’t somehow worse than the disease itself — so I’m keen to give Estriol a try, since the second and third trimesters of pregnancy were very much like a vacation from MS.

I’ll be starting a daily progesterone pill on Day 12 of this cycle to help combat catamenial  (read: caused by hormonal fluctuations around menstruation) seizures. When I was pregnant, I went for months at a time without a seizure. It is my most profound hope that I can return to a life where seizures are a “sometimes” thing and not an everyday occurrence.

I’ll be sure to let everyone know how these therapies affect me.

But for now, my honey just got home, and I wanna go give him kisses. ❤

love

All Hail Second Nap!

Posted in Just Life. by

Good Lord, have I been having a hard time getting to write recently!  So much has happened since my last entry. Fortunately, the little guy is down for his second nap, so allons y!

Happy Birthday, Hugabug!

13122875_10209419410351888_2676262525585641334_oA couple of weeks ago, my little guy turned 1. We celebrated on his actual birthday with the Majka family, and then the Shapiros came into town the next morning and stayed the weekend to celebrate Henry’s 1st and my Dad’s 59th birthday, too.

Our family gets SLAMMED at the end of April. Henry was born on the 29th, Uncle Stuart (my mom’s brother) was born on the 30th, and Aunt Caren (mom’s sister) and my dad were born May 1st.  So, we have 4 birthdays in 3 days. No big deal.

sillyhenry

I can’t love this little goober or his birthday tuxedo more.

Not for nothing, I think that we have an interesting birthday pattern happening. I grew up with my aunt and my dad having the same birthday (but different years). Henry gets to grow up with his mom and his Uncle Nick having the same birthday, all the way down to the year.  If he ends up marrying someone that shares a birthday with one of his future siblings, I will be consulting an astrology expert to find out the real meaning of it all. *lol*

The stats.  At 1 year, Henry was 24 pounds and 30 inches tall. He took his shots like a champ.

Obviously, being the daughter and granddaughter of doctors, I’m a fan of vaccinations — but I’m so glad we’re able to protect him against chicken pox. I had it so badly that I still remember how it felt, even though I was really, really young when it happened. (It was in my ears, people, and between my toes, and pretty much, well, everywhere.) I have a special place in my heart for Caladryl.

He is cruising. Adam and I are sure he will walk any day now. He’s just not doing it yet, for whatever reason. He can hold on to stuff and move quickly and easily. He climbs up and down from the couch. He is eating solids, like cereal puffs and baby cheesy poofs, and he’s learned how to drink the purees from the pouch instead of having me spoon-feed him. He still isn’t comfortable with using the spoon himself, but that will come with time.

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Smash cake tastes good!

And what else? His favorite TV shows right now are Sesame Street, Creative Galaxy, and Tumble Leaf — though he still brightens up when I put on Daniel Tiger, and he’s shown some interest in Peep and the Big Wide World.

He’s babbling like crazy. I expect he will be speaking in sentences within the next few months.  He has several words – Mama, Dada, Nah-Nah (Grandma), Buuuh (book), Bahbah (bottle), and Lahyew (love you) are the most common we hear.

He also has started fighting sleep. So, getting the kiddo to go down for naps has been an exercise in patience and mindfulness. Right now, for example, I can tell he’s awake. He’s smacking his headboard and turning on and off his mobile, but he’s not crying, so I’m letting him be. He’s got a couple of stuffies in his crib, so I’m sure he’s enjoying talking to them.

Health Crap

Speaking of exercises in patience and mindfulness… let’s talk about my health for a second.

Last time I wrote, I had to get an MRI of my liver. Well, I did that. And the gastroenterologist told me she was worried, based on the images, that I might have a tumor.  I did blood work for that, and thankfully, I don’t have one.  She does, however, want me to get another MRI in 3 months. I’m not really sure why, but I’ll be asking when I see her at the end of this month. I’m also not sure if I have a positive diagnosis of NAFLD, but I’m trying to lose weight anyway.

I also finally saw an endocrinologist.  Turns out that I’m terribly chromium deficient, which is causing me to become insulin resistant. My cortisol is also totally out of whack, and the combination of those 2 things means that losing weight isn’t something that my body will agree to. It believes, very firmly, that I need to hold on to all my fat… you know, because winter’s coming.

So, I’m making some big lifestyle changes to change my body’s mind. I’m on a bunch of new pharmaceutical-grade supplements that are helping with energy (I have to take, like, this whole handful of them 3 times a day), and I’ve started a new diet (which is basically the same as The Primal Blueprint, but allows legumes) where I have to eat every 3 hours (or else I get dizzy). I also have to drink about 100 oz of water a day.

As for other hormones: I’m starting estriol in a cream form in a few days as a treatment for my MS (arguably better than any of the currently-available DMDs) and bio-identical progesterone pills to help control catamenial seizure activity instead of going back on Seasonale.

The goal is to get down to what’s considered “healthy” BMI before I get pregnant with baby #2. I am disciplined enough to do the diet and exercise, but I have to hope that my body will play along nicely enough to allow me to get the exercise done. It will be a slow road, since I can’t get my heart rate up too much or I’ll cause seizures.

Fortunately, I have really good support from my heath care providers and my family, and a membership to a 24 hr gym with a cold lap pool. It could be a heck of a lot worse.

Aaaand Henry’s starting to sound not so happy, so this has to be it for now. Hope you’re all doing well. ♥

 

#11 is free, right?

Posted in Just Life. by

Looking for Answers

Welp, the ultrasound didn’t show any stones… but it did show fat deposits on my liver. Now, I have to go get an MRI (w/ and w/out contrast) of my liver so that my gastroenterologist can figure out whether or not I have nonalcoholic fatty liver disease. I’m 99% sure that I have it, because it would explain the pain in my upper right abdomen… and if I don’t, then who the fuck knows. I’m all about some answers.

For those of you playing along at home, this is my current medical condition.

  1. Multiple Sclerosis
  2. Seizure Disorder
  3. Hypertension
  4. High Triglycerides/Cholesterol
  5. GERD
  6. Gastritis
  7. Colitis
  8. Postpartum Depression
  9. PTSD

I joked with Adam that NAFLD would be #10, so my punch card should be full and #11 will be free.  He didn’t laugh. Probably because I haven’t made a punch card yet… but I might, just to keep myself laughing. I keep looking on the bright side. No stones means no gallbladder surgery.

The first line of treatment both for high triglycerides/cholesterol and NAFLD is to lose weight, a minimum of 10% of total body weight over 6 months. (So, for me, that would be 21 pounds.) In theory, that’s totally doable.  I honestly would *love* to lose weight.  I’ve been trying for years now with no success.  It doesn’t matter if I’m on the paleo diet or not. Or if I’m active or not. Or if I’m both paleo and weightlifting.  Even pregnancy didn’t change my weight by more than 15 pounds.

Fortunately, at the beginning of May, I’ll actually finally be seeing an endocrinologist, and hopefully, she’ll be able to help me figure things out.  I mean, someone’s got to be able to help.  I don’t want to die from a heart attack (triglycerides/cholesterol), a stroke (hypertension), or liver failure (NAFLD) – all of which are caused by my being overweight. I’m willing to do whatever’s necessary.

In the meantime, Adam and I are getting back to the gym starting today. Being active never hurts. We took about a month off because Adam burnt his hand terribly on a hot pan, and I was having tons of seizures because of tummy troubles and hormone imbalances.  I’m not expecting magic or anything, but I’m really looking forward to just going for a 30 minute walk on the treadmill if nothing else. I hate being as sedentary as I have been. I’m tired of my tummy hurting, and I’m tired of feeling gross.

12963873_10209025515017754_2491198053406512411_nOn a totally different note…

I was lucky enough that my mom came in for 10 days to help out and hang out with me and Henry while Adam was in and out of town for work.  I always appreciate my mom’s help, and am honestly flabbergasted at where she gets her energy.  To be honest, I’m ridiculously jealous. The lady’s 22 years older than me, and runs circles around me. She cooks and cleans and gets on the floor with the kiddo and doesn’t bat an eyelash…whereas I have given myself numerous mental high-fives just for remembering to transfer the laundry last night.

She also takes great pictures of her grandbaby. Here’s Henry in his Graco Bumper Jumper. He’s too tall for it, but he still can’t get enough. I’m really looking forward to Mom and Dad putting together his rocking horse for his birthday.

Celebrations

Speaking of… Adam’s birthday is tomorrow and Henry’s birthday is in 2 weeks, and I really haven’t done anything to prepare. Yes, I bought Adam a present, but he already got it – so that’s sorta anticlimactic.   And as for Henry… I have got to get my shit together.

Ilovetrash

Patterned tableware is 50% off at Party City right now.  I just have to force myself to stop being such a lazy curmudgeon. I’m like, “How the fuck are these paper plates this expensive even when they’re on sale? I can get 100 plain white paper plates for the cost of 8 of these ‘Wild at One’ plates, on sale.  Why do we need a tablecloth and paper cups?  Will he even CARE if I make him a smash cake? He can’t eat solids other than purees yet, and he won’t have any memory of it… It’s all just gonna be garbage!”

And then I have to remind myself that this is 100% postpartum depression talking. It’s the same inner voice that has dealt out other helpful advice such as, “Henry and Adam would have more money and be better off without you. You should just kill yourself.” I don’t listen to that voice. I treat it like the mental flatulence it is – odious and ephemeral.

Equally ephemeral… the quiet solitude of naptime.  Kiddo’s been down for almost an hour, so I’m gonna see if I can get a few things done before he stirs, and it’s time for me to feed him lunch.

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My one real talent: Getting Henry to sleep. 

 

Slightly more effective than whining to myself.

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A long time ago, I started keeping a journal online. Back in 2001, LiveJournal was all the rage with the group of friends I had made during high school. I loved it. I wrote all the time, about any little thing that came into my head, and so did most of my friends. I was always excited to read what they had written because it made me feel close to them, even though we were miles apart from one another.

I kept that online journal through the end of college, through my entire first marriage, and even through law school.  That blog was responsible for me making some of the best friends I’ve ever had, as well as learning a lot about myself, mostly because I had absolutely no verbal filter on there whatsoever. I never considered how I was publicizing my emotional garbage or how it affected anyone else. I just wrote — raw and honestly. And there was a sort of freedom in that. A kind of validation that I was able to give myself. It was proof that what I thought and how I felt mattered. I miss writing with that kind of abandon, but I also value the restraint that I’ve learned to have with my words.

Words can hurt or they can strengthen. They can inspire and they can thwart dreams.  They can foster intimacy, and they can degrade reputations. Words have power. But so does silence. And when I’m silent, it usually means I’m either terribly busy or that something’s wrong.

Over the years, I’ve chronicled some serious stuff here. Some deeply painful emotional growth, struggles with disease, diet, mental health and, sure, even some random bullshit. But at least I was writing.

These days, with a 3 month old, it’s hard to do much of anything. It’s hard to get restful sleep. It’s hard to remember to eat full meals. It’s hard to go to the bathroom without feeling guilty, to remember to brush my teeth every morning, to shower regularly. But mostly, it’s hard to be creative.

It’s both hard to find time to write, and harder, when I get some “free” time, to find the words to discuss what’s on my mind without breaking down and crying.  The only way out is through, and someday, God-willing, I’ll feel like myself again. I just have a feeling it’s going to take a lot of effort.

And, yes, I’m very well aware that this is textbook postpartum depression. I’ve seen my therapist, and she’s basically said that I’m handling it as well as anyone can.  She said that PPD creates ANTs (automatic negative thoughts) on steroids. To be clear: I’m not actually the worst mother ever, ever.  But we all knew that. Postpartum depression has been written about exhaustively.

You know what hasn’t been written about?  How totally shitty it is to be a decent writer and to be reading absolute garbage to your kid repeatedly.

Every day, I read books to my beautiful son. He loves them. His eyes light up, and he smiles the moment a book comes out.  He doesn’t light up when I bring out my laptop and read stories out loud. He actually cares about the paper in my hand, and his happiness makes me smile, so I spend a lot of time flipping pages and accidentally giving myself paper cuts.

Sadly, these books are terrible, people. They’re 5-10 pages long at most, and each page has maybe 2 lines. More often than not, those lines rhyme in a sing-song fashion.  And beyond rhyming, they teach basic stuff that in today’s day and age don’t matter one iota.

Who cares that the cow goes “moo?” when you’re more than likely never going to spend any time whatsoever with a cow? We are not an agricultural society anymore. Why are we teaching kids about livestock?

Why, if you’re reading about “all the thinks you can think,” would you challenge a baby to imagine places and things that don’t exist (and never have), when they’re still trying to get a basic grasp on the world around them?  I mean, he doesn’t even know what “blue” means yet. I’d love to challenge him to imagine a lake rather than “a day in DaDake.” He doesn’t know what “day” is yet. But who’s allowed to rip on Dr. Seuss? It’s blasphemy. The guy was a genius, and most of his books are amazing. I guess I’m lacking proper respect.

So, yeah, I find myself getting irrationally angry and frustrated with children’s baby literature, but even more irrationally angry with myself.  I am constantly thinking, “I could write something better than that!” And yet, when I sit to write something, I think the most unhelpful thoughts – like “What if this has been done already?” or “Am I wasting my time? I could be making myself something to eat. Is this a good use of my time?”

It’s a sort of writer’s block that I can only compare to how I have dealt with music.  And I’ve dealt with music very, very poorly. I mean, I graduated from Berklee College of Music and studied voice, but I don’t perform with anyone, anywhere, ever. It’s not like you can go to karaoke when you have a newborn, and when I sing at home, I have a hard time silencing my inner critic. WTF is that about? Not helpful, ever. It’s not like Henry has anyone to judge me against or that a 3 month old would have the audacity or even the ability to be shitty to a mom singing him lullabyes.

And God help me if I consider spending any time with my piano or guitar. Even before I’ve tried, it’s like, “Have you ever taken a lesson in your life, Rae? (Only several years worth.) Not sure why it’s like I don’t know a damn thing.” I don’t have any idea what I’m actually afraid of, but it legit feels like panic and fear. I remember sounding bad for years to get to sound good. Why should I be so impatient with myself now?

So, yeah, I’m creatively constipated. That’s the only way I can describe it. I desperately want to make music and write new songs. I wholeheartedly want to create children’s books that Henry will find helpful and that will show the world that there’s some value to my existence… but I can’t seem to do shit. (Pun intended.)

At least, I can blog while my husband and child sleep.  Because blogging is basically whining to yourself. You just happen to let the whole world see it, and that accountability counts for something. It’s not high art, but it’s a damn sight better than being silent.