RA and Me

I wrote a post a while back about having chronic illnesses and being a mom. Chronic Conditions and Momming was written before my rheumatoid arthritis diagnosis.

1. My older sister has lupus and we had the same rheumatologist at one point. Once we discovered this, we thought it was hilarious. There’s a lot of rheumatologists in Louisville, and we ended up with the same one?

2. My grandfather had severe RA. He died in 2016 at the age of 83. His hands were curled up from the severe joint deformities. He took medications for it, but still had issues that weren’t able to be reversed.

3. I am currently taking a mild medication daily. I had to wait for my thyroid meds to be regulated before I could start RA meds. That sucked but things are good in this area. (Short version: I’m on Levothyroxine due to a partial thyroidectomy in 2017.) Joint pain is REAL.

4. My biggest issues? Joint pain in my hands, knees, and hips. Like many others, I’m super stiff in the mornings and it takes at least an hour to loosen up. Hot showers help. Moving around does help but also hurts. Eventually, the stiffness goes away. Usually. If it doesn’t, then it’s a bad pain day, which leads me to #5.

5. I don’t like taking pain meds. They make me tired and nobody has time for that mess. I usually won’t take them unless I can barely move. I’ll use a heating pad, massage, stretch, etc. The pain meds I do have, however, are non-narcotic.

My doctor is pretty smart- probably not a good idea to prescribe a recovering alcoholic hardcore narcotics. She probably enjoys having a license to practice.
Rheumatoid arthritis sucks. I hate missing out on things because I’m tired, hurting, or both.

Pic with Cameron

It’s possible to live life with chronic conditions. I have two. Some days are just worse than others. I can get through them with humor and my support system.

If you have a chronic condition, how do you get through it?

Why it’s Okay to be the Not So Fun Parent

Where’s the Fun?

Parenting is not fun 100% all the time. Any parent that says this is lying. I love my kids dearly, but there are days in which this parenting thing entirely sucks. Either two or all three kids are fighting (their longtime favorite is the front seat of my car), someone is sick or injured, or if I’m really lucky, both. I even nicknamed the fighting between Julian and Lily “The Petty Olympics” because they constantly go for who can bring up the pettiest thing and get on my nerves the most.

Other days, my house is a magical place in which dinner is done on time and nobody fights. This is great.

Most of the time, I’m home with the three ring circus, as the kids are jokingly called. Even when I worked, much of the after-school childcare has been my arena. I’m permanently on call while the kids are at school if anything goes down (and it has- I’ve picked up each kid at least once). This leads me to be the enforcer. The not-so-fun parent.

Someone’s gotta do it, right?

This is not to say Matthew is not a good dad, because he is. He simply works a schedule that brings him home around 7 PM and it’s been this way for many years. Many dinners have been burnt in the process of the kids not tearing the house apart, having a meltdown, or fighting. Fighting is a common theme at my house.

Mom is a Meanie

If I had a dollar for everytime that Lily told me I am “the meanest mommy ever” I would never have to work again.

She’s 10. She has no idea what’s coming for her in the future.

It used to hurt my feelings that my kids thought I was mean and they didn’t like me…but no longer. I had a chat with my mom, the queen of mean moms. She reminded me that it’s not really my job for these kids to like me but for me to raise them to be decent people.

Good point, Mom.

Now quit buying my kids recorders.

One of our biggest challenges as parents is to do what my mom said- raise our kids to be decent people. They need to learn manners, to fight fairly, talk appropriately, and many other lessons. This may mean not being the fun parent all the time.

Sigh.

I’ve had to let the kids learn to squash their sibling fights on their own (unless things get super bad) because it got draining on all of us. Being the not so fun parent means having to enforce the rules, all the discipline stuff (big bummer), making sure your kids don’t hurt others and teaching them how the world works, especially when they mess up.

I do worry that I’m a bit too hard on the kids. When we’re out in public, I do tend to crack down a lot on their behavior before it even looks bad. One of the last times Julian had to get a haircut, he was so angry he walked out as soon as he was done. He got my evil mom glare as he walked out. I took a deep breath, apologized to the hairdresser and gave her a really nice tip. He was mad that he had to get two inches off the top, not just one.

Matthew tends to be a bit more laid back in general so someone’s got to be be a bit heavier with things. If I wasn’t, I’m pretty sure this house would be a crap show in an hour. This also fits my semi Type A personality. It’s okay to be the enforcer. Kids need structure, rules and guidance. My kids gets that from both Matthew and I. They know that I have basically zero tolerance for certain things but being kids, they will still attempt to push buttons. It’s what kids do.

The biggest payoff, not that I was looking for one, is hearing how well-mannered my kids are when they are with other people. My friend Madonna has five kids. She kept my boys overnight recently and when she brought them back, she told me “Your boys are so good! You should be proud of them. They were so nice and have good manners.”

I thanked her. I guess the not fun mom thing does pay off. She told me her kids are loud and wild no matter where they go, but she and her hubby are working on this. I figured that while my sons are less than mannered sometimes with me, I have taught them something while they have been rolling their eyes and sighing at me.

The lesson here is: your kid might be annoyed at you while you’re teaching them manners and other things but it does pay off.

If you’re the “not so fun” parent, don’t be so hard on yourself. It’s okay to be a bit harder on your kids, especially in the age of super disrespectful kids. I’ve seen videos of kids that shocked me- my mom wouldn’t have tolerated any of that for a second. Kids aren’t robots, they do have thoughts and feelings- but it is good to instill things like respect and good behavior in your kids.

Parenting is a tough job- try to make the mental load a little lighter. Try to have a bit of fun in the midst of the seriousness. I certainly do.

Pics courtesy of Pinterest

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Not Just the 3 of Us
Wonder women

My Experience with Body Image Issues

I’m 35 with three kids.

My body has been through a lot of changes.

The Mommy Bod

Before kids, which now seems like eons ago, I struggled with my looks and weight. I’m 5’2″ and not the most athletic type. I have curly hair which I used to hate. Growing up, I rarely saw models in magazines that looked even close to me. If I did, they were skinny with straightened hair.

I just wanted to look like everyone else but that was not possible. I couldn’t change my skin tone, hair or any other physical characteristics. I got busy with school and work but stayed at a decent weight. Over time, I even started liking my curls.

These pictures represent my weight loss and gain in the last few years. After kids, I got up to almost 200 lbs. I was diagnosed with Type 2 diabetes in late 2009 (which I no longer have thanks to diet, exercise and losing weight) and got serious about my weight. I wanted to be healthy for my kids.

A Sharp Turn

In 2013, that weight loss took a different turn. My anxiety kicked into overdrive because of the issues I was having with Matthew. I began thinking if I was skinnier, things would get better. I tend to not eat much when I’m stressed so this became a bigger issue. I would eat one meal daily for days on end due to stress.

Sometimes it felt like I was punishing myself in a way for not being the wife and mom I was “supposed” to be. I may have been punishing myself for making Matthew so angry. I also spent lots of time in the gym- at least an hour four days a week. I’d have done more if I had time.

At my lowest weight, which was August 2015, I was 125 lbs and a size 4. I was so small that my co-workers asked if I was sick. My doctor told me that my pancreas, already not able to produce all the insulin I needed, might give out entirely and result in Type 1 diabetes if I didn’t stop losing weight and pushing myself so hard. I’m not sure I cared.

I loved the way I looked- I finally fit into a string bikini but I was so nervous about it I didn’t want to take off my cover-up. (A friend yanked it off, but in a good way.) I don’t think Matthew cared either way- he had seen me before and after three pregnancies. It’s not like he saw me naked much at this point.

Jake was worried- one of his last worries about me was that I was too skinny. He told me I was still gorgeous but I needed to gain “like 5 or 10 pounds.”

Jake got his wish, but he didn’t live to see it. I gained 60 pounds after his death. I ate, drank and didn’t think about exercising for a long time. I was deep in a hole of grief and depression.

Comeback of the Curves

I stopped drinking and move around a bit more these days. My pancreas survived and it’s functioning quite well. Thanks to having RA, it can be a bit rough but I do what I can to exercise. One of my medications has a side effect that messes with my appetite but I’m not going to be upset if I lose a few pounds.

I don’t weigh myself- there isn’t a scale in my house. I’m not entirely sure what I weigh, my best guess is around 170. I’m a size 12/14. I’m okay with this. I’m happier, I’m funny again, I love food, I’m healthy as I can be, and I got my curves back. The second picture is me in Daytona Beach in August. I look much better.

I can’t say there was a moment where everything clicked and I stopped going so hard on my body. I was a little sad when I didn’t fit size small sweats in late 2015, but I had much worse things to deal with. While I was in therapy, I worked on how I saw my body. It’s been through a lot, and I realized I should have a lot more love for it.

There are three people that are on this planet because I grew them inside my body. I lived through a mini-stroke. I have two chronic health conditions but they are manageable. I’ve had three major surgeries (tubal, gallbladder removal and a partial thyroidectomy). I may have a few rolls but there are curves, stretch marks, surgery scars, and tattoos.

I still have bad days like every other woman but I remind myself of where I have been. I remind myself that I’ve looked a lot worse and that I’ll probably look different in a few years. I’m good where I am now.

Tips for Better Body Image

It can be very difficult to change how you feel about your body.

My helpful tips?

1. STOP LOOKING AT MODELS FOR VALIDATION.

I’ll confess, I’m a huge fan of Tess Holliday. She’s a plus-size model, and I love her message. I don’t look at her or other models anymore for what I should look like. I like her because she has amazing red hair, great makeup and #effyourbeautystandards is empowering. If you’ve never heard of her please look her up on Google. I like a handful of other models but for makeup and other reasons. Models work extremely hard to look like they do and it’s almost unrealistic for most of us to pull it off.

2. Remember what your body has done for you. Have kids? Even one kid changes your body permanently. If you’re a runner like my friend Lauren, there’s a lot of maintenance involved that I don’t want to imagine. She looks fantastic. I’m sure she will thank herself later in life for keeping herself in such great shape. (I hate running. I don’t even run to my mailbox.)

3. Realize that you are more than just what your body looks like. This may take a bit of work in the self-esteem department (lots of work for me) but it is well worth it. Everyone has interesting and/or quirky qualities about them that are likable besides what their body looks like. Do the work- make a Pinterest board of quotes, write in a journal about it. Talk to someone if you need to. The work will be worth it.

Have you had issues with body image? How did you work through it?

Quotes courtesy of Pinterest

My Random Musings

Adjusting to a New World

Many parents, myself included, envision parenting as this wonderful adventure in which kids develop at the pace they should, play instruments and/or sports, learn to drive, go to prom and all that great stuff.

But what happens when those things are altered because of a special needs diagnosis?

Cry a little

The Big Change

Some parents find out about their child’s diagnosis before or right after birth, in cases of Spinal Bifida, Cerebral Palsy and Down’s Syndrome. I know parents of kids with these diagnoses, and it has been life changing for these families. All of them have other kids without any special needs.

The adjustment is hard. I cried my way through Lily’s evaluation for First Steps the day before her first birthday, even though I knew something was not going right. I knew she needed more help than what I could give her. That story can be found in Special Needs Round Two . When her diagnosis of global delays was given, I was even more devastated. The blame game began. It took a lot of talking with Lily’s speech therapist, Denise, to realize that it wasn’t my fault that she was developmentally delayed. We are in the process of getting Lily re-evaluated. At ten, she is still showing signs of issues that we thought she had grown out of. Cross your fingers for us- we may need it.

In Julian’s case, it’s been a tougher road. His psychiatric nurse practitioner, Ann, once said that we have adjusted wonderfully as a family to Julian’s needs. I almost hugged her. I explained to her that it has not been easy and it remains a somewhat rugged path. My question is: Why not adjust? Julian is wired differently and that’s okay. If we didn’t adjust, he would feel badly about himself and I couldn’t bear the thought of this. It would also cause so much chaos for him that he doesn’t need or deserve. It would do the same for the rest of us. Why do that?

He needs the ability to feel okay about who he is, quirks and all. We’ve enjoyed watching him grow and finally develop a sense of humor. Every kid needs that, with or without a diagnosis. In a home with medical issues, this is a necessity.

I have made many mistakes in raising Julian (and his siblings). Even after reading up, trying many different things, therapy for both of us, getting Matthew on board and lots of burnt dinners in the process, things remain interesting. Julian is now 12 and puberty is kicking in.

Learning that your child has a medical and/or physical special needs diagnosis is complex. Some parents grieve the life they feel their child “should have had”. This is a rough one for me, as I’ve never done this. I can see this happening with kids with severe medical problems. A high school friend of mine has a child with spinal bifida and she lives a full life. Instead of being devastated and staying in a hole as some might, Shelly and her kids go out and do all kinds of neat things. Ryan is eight, and she is one of the coolest kids ever. She’s a tiny fighter. Some parents, like myself, are devastated and are not sure where to go next. Some fall into the “research pattern” and find all kinds of information to know exactly what to do.

This can be a great thing- I have read up a lot on Julian’s diagnoses and it didn’t hurt to work with kids with similar issues. (It did physically hurt some days, but that’s another story. I learned a lot from that job.) Some parents, sadly, go into denial. This can be damaging to everyone involved, and I highly recommend seeing a therapist, church member, or another trusted person. If it’s your partner, this can get really bad quickly, and I definitely know the pain of where it can go. Please do what you can to change that path. Talking can help. Easing your partner into information, appointments, and other things can help. Just don’t force them, because that can make things worse.

I recommend reading up, asking questions, and getting all the help from the medical community you can. The more information you have, the more empowered you feel to help your child. Julian’s been very lucky- he has had a great team from day one, because I wouldn’t let him have anything less. I’m a proud mama shark.

Never give up

It’s okay to feel different things- don’t let anyone make you feel different. Julian was diagnosed almost seven years ago, and some days I still feel overwhelmed. As of writing this post, I’m about to battle it out with his school over his IEP because it’s currently not being followed. Some days are better than others. Some days are absolutely great, some are so bad that you want to devour a liter of Cherry Coke, a bag of salt and vinegar chips and call it a day. (Okay, maybe that’s just me. I didn’t do all of that, but I considered it.) If you’re overwhelmed, write it out. Get someone to help you sort out your feelings.

Making The Best of Things

Daily life also changes. Depending on the diagnosis, your child may need assistance with everything, or nothing at all. This can become time-consuming and require an overhaul of your routine as you knew it. Food may need to be altered due to sensory issues- I live in a house with two kids with sensory issues, and I gave up on those battles years ago. Julian won’t eat french fries if he can see the potato skins or if they aren’t super warm. Lily won’t eat anything that resembles soup, any pasta that isn’t spaghetti, mainly because it looks different. Julian actually had a meltdown once over the shape of pasta my father in law used for dinner. These changes can be irritating to make, but they are necessary for the world our kids live in. I’ve learned to look inside Julian’s mind a bit, probably because of my work, and try to see the world as he does. It can get hard, but it’s worth it. Explaining this to others can get even harder, even your partner.

Small steps

It takes time to adjust- it won’t happen overnight. It takes time to learn how your child’s machines work, or how to get the wheelchair to fit in your van. Give yourself space to make those mistakes. I completely screwed up Julian’s 12th birthday party by inviting too many people, which cause him to shut down at the end, but I’m pretty sure he still likes me. He used to get mad at me when I would hold onto him with a death grip in parking lots and large stores, but he had a bad record of eloping. It was terrifying to have to run after a very fast 5 year old, especially in a parking lot. He was seven before I let him walk more than a foot or two away from me. (I never used a leash because I hate those things.)

If you’ve got a kid who takes things literally, you have to change how you talk to them. For example, I once told Julian to drop the jar of jelly he was holding after he was told not to eat anything. I was making dinner and he didn’t need to eat so soon before.

He dropped the jar.

Major mom fail.

Thankfully, the jar was plastic. That would have been an awful mess otherwise. Matthew and I have had to re-think things before we say them, because Julian thinks differently, and so does Lily, to an extent. We are still trying to figure out her thought patterns. She doesn’t quite think on a 10-year-old level, so we have to tread carefully.

Super parent

Final Thoughts and Tips:

If you have to buy things to keep your house, kid and car safe, do it. You’ll thank yourself later.

It really does take a village. I have friends that have kids with all kinds of physical/ developmental disabilities. A few have kids with autism, and they have been so helpful when I’ve needed them.

Being a parent of a special needs kid will make you a different person. I’ve fought for Julian since day one. Lily’s issues haven’t required so much of a fight, but I would do the same for her. It makes you tougher and less likely to take people’s crap.

Breathe and find something that makes you laugh. Comedy will get you through anything.

Get a binder and organize all of your kid’s paperwork. Julian and Lily have their own binders.

You are not alone, and get help if you need it. Take time for you, because your kids need Mom at her best. If you’re tired, sad and cranky, that’s not your best.

If you have other kids, let them be involved in adjustments. It’s not easy to be the sibling of a special needs kid. My kids have been pretty good about Julian, but it can get hard for us as parents. Cameron and Lily have a post about this in The Siblings’ Turn

Allow your child to live their best life. If they can do it- let them. My friend Laura Leigh’s son, Levi, is seven. He is in a wheelchair due to Cerebral Palsy, and he is an awesome kid. He smiles for days, gives his younger sister Presley wheelchair rides and loves school. I let Julian run cross country in the fifth grade and he loved it. We have a rule that his diagnoses aren’t excuses for not behaving. He does have bad days, but he doesn’t get to say, “I’ve got autism, so I get to act like that”, “I forgot my ADHD meds, that’s why I’m like this today”.

Most of all, love and accept your child the way they are. It might sound weird that I wrote that, but it is saddening that many parents don’t. Acceptance and love matters- it’s everything.

Quotes courtesy of Pinterest

Recommended Reading: The Spark: A Mother’s Story of Nurturing Genius

Twin Mummy and Daddy

Raising Boys and Girls: The Differences

My boys were born in 2005 and 2006. I thought I’d never have a daughter and felt a small amount of sadness.

A small change occurred in 2008 in the form of a little girl, Lily. She even got her own post, My Dream Girl

I didn’t think there were many differences between raising boys and girls- at first. I must have been in a sleepy haze or serious denial. Now that I’ve caught up on a few years of sleep, I’m much wiser.

Ladies First…

Zoo pic

Lily at the Louisville Zoo, Summer 2018

I was once a little girl. I couldn’t have been that difficult to raise, right? I asked my mom if I was as dramatic, loud and messy af as Lily is. We call her room “the kid version of “Hoarders” because it’s never clean for more than a day. My mother told me yes, I was loud (I’m still loud at 35, no shocker), dramatic, but not quite at her level of messy.

THANKS, MOM.

Puberty has come for us and the current situation is buying bras. I had to get her a real bra recently, not just the cute sports bras. Yikes. She’s 10. Is this a thing? I skipped training bras and went straight to regular ones.

We’re a bit gentler on Lily. She’s more sensitive than her brothers and still may be developmentally delayed. (She is getting evaluated very soon.) That requires a different mindset. I have to teach her different things- to know her worth as the woman she will become, how to say “no” and not feel bad, caring for others (as in a family, should she have one) and many other things. The boys will get the same lessons but obviously slightly tweaked.

Lily loves clothes and has shown interest in makeup which is a great thing. I can’t wait to see this develop. This is just a glimpse into the fun parts of raising a daughter.

The Boy Brigade

Arch pic

Cameron and Julian in the cart at the Arch

These guys have been full of adventure since birth. They have really lived up to the hype of “boys get into everything”. Once Julian was able to walk and talk, the joint adventures began. They have rode in laundry baskets down our stairs, made a slip n slide on the kitchen floor, slid down the driveway on sleds, gotten injured together (Julian ended up with staples in his head) and many more things.

Now they team up to see who can annoy Lily and Mom the most.

Most of the time, the boys are low-maintenance and I appreciate this. Sometimes. I don’t appreciate them wearing the same socks for four days in a row, using their bed as a trash can or any of the other many gross things they do. Ew. My boys have shared a bedroom since Lily was born. They’re cool with this, probably because they can stay up late, talk and plot to take over the universe.

Science center bubble

Julian making a bubble at the Louisville Science Center

Being the mom of two boys has lowered my shock factor. At this point, if someone isn’t bleeding, broken a bone or the house isn’t on fire, I’m good. As of writing this, two out of the three have occurred- no worries, my house has never caught on fire. Boys have been much easier to raise- they do get mad, they cry, but with a lot less drama involved.

Well, with one. Julian and Lily participate in what I call “The Petty Olympics” to see who can fight over the smaller things. This, of course, is when Mom is done for the day, maybe even the week.

We feed them, keep them clean, medicate them (both are on meds- Cameron takes one for migraines and SVT and Julian has his ADHD meds) and love them. I think they’re doing pretty well. Keeping them clean is a bit interesting- their showers are destroying our water bill. Lily needs a bit more to keep going but some kids do. We’re okay with that.

Magic house pic

Cameron at the Magic House in St. Louis

I’ve been very lucky to been able to have these kids. All jokes aside, they complete my life.

Do you have kids of both sexes? What differences have you seen? If you don’t have kids, what do you think?

Twin Mummy and Daddy

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