Book Review: “Fall to Pieces”

I love to read memoirs. For some reason, I really enjoy reading memoirs of those with addiction, and this was before my drinking became a problem. I’ve read “Life” by Keith Richards, which was fantastic but took three weeks because it’s over 500 pages.

I’ve also read Nikki Sixx’s book, “The Heroin Diaries”. It was a bit wild, but still very interesting. I’m just waiting for a member of Fleetwood Mac to come out with their memoirs. If anyone knows of one, please let me know.

I”ve read “Fall to Pieces” before, but it was a bit different re-reading it this time. This book was written by Mary Forsberg Weiland, the first wife of Scott Weiland.

He was the lead singer for Stone Temple Pilots, one of the best rock bands of the 90s. If you’re too young to know who this band is, you might want to go on YouTube. They were a great band. Scott died in December 2015, unfortunately from an overdose.

Book cover

The book opens with a very descriptive explanation of her childhood in California, a bit in New Jersey after her mom’s remarriage and, of course, when she met Scott.

Mary also became a model while moving around and became quite successful while still a teen. She also met her best friends during this time. She became friends with Anthony Kiedis, lead singer of Red Hot Chili Peppers. They have remained friends for many years.

It wasn’t until I read Scar Tissue, his autobiography, that I understood all the while Anthony was being my true friend, his own soul was being badly shaken.”

This stood out. We don’t always know what our friends are going through, much less anyone else. People hide things but still make things look at least bearable. I’ve been there for my friends through their own issues but yet struggling through my own.

The story of her relationship and later, marriage, with Scott, is so well detailed. She tells of the good, bad and in between. They were together off and on nearly a decade before marrying, and they had two kids together- a daughter and a son.

During this time, Mary drank and used a lot of substances. She knew it wasn’t the best way to live, but it took multiple attempts to finally stop using.

Mary also has had a long battle with bipolar disorder, possibly beginning when she was a teen. It’s hard for her or anyone else to know. She wasn’t diagnosed until well into adulthood, and this is well documented in the book. She struggled to accept this diagnosis along with being an addict.

Many people with either issue do. I will say she is being treated and is sober, but I won’t spoil the ending for you on how she got there.

Mary shared a quote from a community college class:

“In recovery, we look for progress, not perfection.”

Collage 2018-04-15 14_57_12.jpg

This is very accurate. Nobody is perfect, and anyone recovering from any kind of addiction certainly isn’t. Progress is what counts the most. It is not close to easy, and anyone who tells you it is- they are not entirely correct.

One of my best friends, Tyson, once asked me if I was okay while sitting at dinner and the talk to turned to beer for a while. I wasn’t a fan of beer to begin with, and he knows this, but he was making sure I wasn’t thinking about having a drink.

I wasn’t, but I am very grateful that he asked. It took a year before I could even go into a sports bar. “One day at a time” is the best quote I have ever heard that applies to recovery.

As many of us know, Scott and Mary did not work out (the section about the end of their marriage is a sad one) but they were able to co-parent, at least as of the writing of this book. I’m one of the millions of fans that were saddened to hear of Scott’s death. He was incredibly talented, like many others, but yet, he had an addiction that he was never quite able to end.

Pic courtesy of Google

The Deeper Thoughts of A Special Needs Mom

I’ve talked about Julian, and to a smaller extent, Lily, a lot. If you’ve missed Lily’s story, you can catch up in these stories:

Special Needs Round Two

Thoughts on a Second Diagnosis

It’s a lot to deal with. I didn’t wake up one day and wish for not one, but two kids with special needs plus a third with a heart condition. I promise you, I didn’t.

Cameron’s SVT is pretty much manageable, but it’s still super scary when your kid texts you at school because his heart feels funny and you’re a half-hour away trying to watch “The Act” with a friend. (I recommend that show if you’re ready to throw things at your TV.)

I’ve heard pretty much everything since I even had a thought that things weren’t 100% okay with Julian when he was somewhere around four years old. Lily was about a year when I noticed things were less than perfect with her development.

One of Matthew’s aunts hinted that having her three weeks early plus my heavy activity while I was pregnant with her might have led to her not doing what she should.

I almost punched her. Matthew grabbed our coats and we went for the door. Mama Bear was ready to roar.

Not long afterward, Lily was evaluated and of course, I didn’t do a single thing to cause her delays. She was born three weeks early, but that’s not early enough to cause the severe global delays she had. His aunt can go have several seats because Lily has since kicked her brothers’ butts in grades and speaks wonderfully. Two years of speech therapy will do that for you.

When you have a kid that consistently has meltdowns, tears your house apart, runs off in public and does other things that make people go “hmmm”, you’re going to hear a lot of different opinions. I heard almost everything before and after Julian’s diagnosis, even after I put him on meds, even from Matthew, which contributed to our marriage falling apart.

Sad

The Battle In My Mind

I heard a lot internally, also. This is the stuff that will rip you into shreds. It ripped me in half. I read books. I cried. I yelled. (I’m still working on this one, because, well, I’m not perfect.)

I talked to my mom, who understands Julian on a level that I am not sure I ever will. She says she was like him as a kid but didn’t have a mom that tried to understand her like I do Julian. Even though I worked with kids that were like him but bigger, I still didn’t get it. I was lost. So was he. I kept hearing these thoughts:

“You’re a terrible mom.”

You can’t handle Julian and Lily.”

The house is a mess and so are these kids.”

“You’re not good enough”

No wonder I was depressed, and Matthew wasn’t helping. I was trying to help Julian on my own. Lily had therapists left and right, and she did great in First Steps, but I was entirely on my own with Julian. I had some moral support on the bad days from friends and my mom, but I stopped going to Matthew because I knew I wouldn’t get it.

Julian finally got diagnosed in late 2011 and his evaluation was one of the best parenting decisions I’ve ever made. The story of that can be found in Looking at the Bright Side

Getting him on medication is a decision that I do not regret and to this day, I’m glad that I did. Some kids with severe ADHD can function well without meds and that’s great, but as of now, it just isn’t a possibility.

Maybe when Julian gets older, we can revisit meds, but for right now, I’m not willing to take him off. Clonidine is a great medication for impulse control and sleep- he has not been a great sleeper since he was a toddler, and whew, he needed something for impulse control.

Hearing From the Outside World

In the almost eight years since his diagnoses, I’ve heard so much, positive and negative about them. At this point, I’ve probably heard everything, so I no longer care. These are just a few that stick out:

“I’m sorry”- well, I’m not. I am not sorry that my son has an awesome brain that not a lot of us can understand. I would not change him, but I would change his struggles.

I couldn’t do it“- it’s not as hard as you think. Some people really are not meant to parent kids with special needs. If you watch the news, you can see this. Being the mom to two kids with special needs is hard.

It’s really hard when both have a rough day and all I want to do is cry. Instead, I just do my best and everyone goes to bed early. I have a support system that now includes Matthew, my mom, and great friends.

“He doesn’t look autistic”- this makes me want to punch people. First of all, there isn’t a “look” that people with autism have. They look like everyone else. Second, I’ve put years of hard work, money and my marriage on the line (right down to divorce papers) to make sure he is happy, medicated and has skills to live the best life he possibly can. Why wouldn’t I?

“Does he really need the meds?” This one was from my mother in law. She wouldn’t give him his meds on sleepovers but yet complained that Julian wouldn’t sleep. Matthew and I told her either stop complaining or give him his meds- guess who sleeps great now?

I don’t explain anymore to people why I decided on meds, I simply ask them if they want to come to my house on a day in which he hasn’t had meds in two days. (This is not a thing, by the way.)

“How do you do it?” This is annoying. I parent just like everyone else- I get out of bed and hope for the best. Honestly. Pepsi helps. Staying sober is a huge thing. When I was working with kids with developmental disabilities, I will admit, that was rough.

I would come home from a full day, sometimes 12 hours, then have to deal with Julian. (Lily was much easier.) I was mentally and physically drained a lot, and I almost asked to not go to those units, but I loved the work. I eventually transferred to one of those units about a year after Julian’s diagnoses.

At this point, I keep a consistent routine, both kids in their therapies, Julian’s medications consistent and just keep moving. Three kids is a bit of a circus without special needs, but having two with ADD, ADHD and autism is a whole different game.

It requires patience and empathy that I didn’t think I possessed, but here I am. Some days entirely suck, but then, I am dealing with two teens and a preteen.

“ADHD is not really a thing.” Okay then, please come clean Lily’s room, because she cannot without a list explicitly telling her what to do. I also have to take her tablet. She gets distracted so easily that I have to constantly check on her, which annoys her but the job gets done, right? Plus, come wake her up for school. No other explanation needed.

I’m already trying to figure out her morning routine for middle school because it will have be a lot different from the elementary school one.

If you want to experience it from Julian’s perspective, try being super smart, but bored as hell after you finish your work at school, even when the teacher offers you more stuff. Try being hyperfocused on things but not being able to finish them because you, like your sister, get distracted easily.

As a five-year-old, try running off in a parking lot after a bird and not realizing there are cars that can back out at any minute and hit you because all you want is that bird. Oh, and throw in autism. It’s a lot. I don’t know how Julian does it. He prefers to stay at home but will go out if there’s not a lot of people involved.

This stuff happens, everyone. I had to chase Julian through parking lots more than once because he darted off. He’s always been a fast runner. Luckily, he’s stopped this. Whew.

Even with meds, he struggles. They don’t cure ADHD, but they definitely help. I wasn’t looking for a cure- just something to help him not be so aggressive, impulsive, calm enough to sit and learn, and most importantly, sleep. As the years have passed, Julian has calmed down quite a bit, which is a bit of a relief.

Flower

A Few Kind Words

If you’re reading this and you’re not the parent of a special needs kid, please take this as what not to say to someone who is. There are other things you can say that are so much nicer, like:

  • “How is your child doing?”
  • “Is there anything I need to know or learn about your child’s diagnosis?”
  • “Let me know if you need to vent/get out/anything else” (this is so freaking important and believe me, we need this)
  • “You can do this.”
  • “How can we include your child?”
  • “Neat accessories”.. if they have them

These are just a few suggestions. I’ve had parents ask how they can accommodate Julian over the years on playdates and parties and I have appreciated this so much. My father in law has indulged his love for destroying things by bringing him things from his old workplace to take apart.

I’m just a mom, trying to get through parenting. It’s a weird world out there.

What annoying things have you heard while parenting? It doesn’t have to be special needs related, because every parent has heard something annoying. Feel free to share.

5 Facts About SVT

Parenting is challenging. Sometimes we are given those challenges out of nowhere. Cameron has been my “easiest” kid so far but yet gave us the biggest scare.

A Bit Of Background

Cameron was diagnosed with SVT in June 2015. This was discussed a bit in The Hardest Parts of Parenting

His diagnosis came after a game of basketball that led to an ER trip and scaring everyone in his elementary school in the process. Heart issues are very common in both Matthew and my families.

Cameron has been back to the hospital a few times since, due to more (smaller) episodes and for a small procedure to stop the episodes in 2017.

Due to some small episodes, he has had to be on a heart monitor for a month twice. I yelled at different customer service people over shipping complications with the stickers both times.

Mama Bear does make appearances from time to time, everyone. I try to be a nice person but when you mess with my son’s health…

Luckily, we live near a hospital that is amazing and Cameron has a cardiologist that spent his many years in school learning how to take care of kid-sized hearts.

The monitor came off both times without any issues being noted. He only goes back if anything comes up and as of yet, nothing. I will karate chop anyone, however, that even thinks of giving him anything caffeinated.

This includes energy drinks- no Monster drinks at this house. He currently takes two medications for migraines. One helps with his heart, so we consider it a two-for-one. The other is just for migraines.

Hospital pic

What IS SVT? Five facts

The last time I talked about this, I either said to Google it (because Google knows all) or I left a link, but this time, I’ll educate.

I decided on this because one of my greatest nightmares with Cameron is him collapsing during a basketball game and dying like I’ve seen numerous times on the news.

Most kids that die in that way during a sports game had a previously undiagnosed heart condition- either Long QT syndrome or sometimes SVT. Please bear with me, everyone, I’m not a cardiologist.

  1. SVT is an abbreviation for supraventricular tachycardia

This means that the electrical system in your heart works incorrectly, which can lead to an irregular heartbeat, chest pain, and in some cases, loss of consciousness. In Cameron’s case, he passed out in his first episode because his blood pressure dropped. His school immediately called me and an ambulance.

I couldn’t make it to the school in time, so the principal rode to the hospital with him, where I met them. In his second and more severe episode, he didn’t pass out, but he couldn’t walk and I had to get a wheelchair because I couldn’t carry his 12-year-old self in. I did make him stay awake in the car. He was in the hospital for four days that time.

The last few episodes weren’t as serious- but still not fun.

2. SVT can happen at any time, but episodes can happen years apart or never again.

I didn’t like hearing this part at all. It scared the hell out of me. I was afraid to let Cameron do anything for a while after his diagnosis because I was scared it might trigger an episode but he’s got to live his life, right?

He went from June 2015 to March 2017 between episodes before his procedure. That’s not bad. He’s had a few small ones since the procedure but nothing that required hospitalization.

3. There are some known triggers, but then it can also happen while you’re doing nothing or can wake you up from sleep.

Cameron has had smaller episodes during migraines, which is why he is now on medication for both.

He is also not allowed to drink caffeine except for small amounts if he needs it during a migraine, and he stays well hydrated during the summer. That seemed to trigger both episodes. The last episode was triggered by Ultimate Frisbee in gym class and I think he may have been overheated.

4. SVT can stop on its own sometimes requires action to slow the heart rate.

During one of Cameron’s episodes, his heart rate was well over 200 and I was petrified. I had to stand in the hallway, peeking through the curtain as the nurses and doctors worked on him.

There are small maneuvers that you can do on your own, like blowing through a straw or blowing on your thumb, but sometimes those aren’t effective. In the ER, most patients are given medications through IV.

Cameron had to be given medication three times before being transferred to a downtown hospital, where he was in the ICU for three days before spending a fourth in a regular room.

5. There is a procedure that can stop SVT.

Cameron was eligible for an ablation. His two episodes were severe enough that his cardiologist suggested it as soon as he went into the ICU. Cameron was awake but sedated, and his cardiologist went into his heart, found the tissue that was causing the bad heartbeat and burnt it.

Cameron stayed overnight and was home the next day. He missed a couple of weeks of gym class, but I don’t think he minded that very much. It has a high success rate, but Matthew and I were both very scared something would go bad.

I mean, it is small heart surgery. It went well, and Cameron is an active kid. He can play all the basketball he wants.

SVT can be a scary condition. I still worry when Cameron is outside playing with his friends or at school- his school is well informed. He knows what to do if his chest starts hurting and so does everyone that he spends time with. If you want more information on this condition please go here.

Ocean pic

Benefits of A Family Vacation

Having a family is fun.

There’s first steps, summer activities, sports, band, kids making friends and a lot more.

Let’s back up to summer activities and discuss vacations. Many families go on vacations at some point. Some wait until the kids are old enough to remember them, some start going right away. Vacations are usually fun but can have a bit of mishap involved- which make for good stories.

What We Can Get Out of a Vacation

Our family has gone on two major vacations, and we are considering another over Summer Break, likely to Washington, D.C. Both times, we let the kids have input on what they wanted to do. Julian didn’t want to do anything educational, but he was overruled.

He’s really out of luck if we make it to Washington, D.C. (He has already said he will sit in the hotel room and watch YouTube while we go to museums- so he thinks.) Planning our trips was pretty fun. If your kids are old enough to do so, this can allow them to feel included and build excitement for the trip.

How you get there can be part of the fun. We chose to drive to St. Louis and Daytona Beach- for the five of us, it’s a lot cheaper. I’m the only one who has ever been on a plane. I don’t think Matthew is a fan, and we aren’t sure how Julian would do- motion sickness plus sensory issues might equal something that none of us want to experience. Plus, Lily hates heights.

The kids kept busy with books, coloring, and Netflix. I listened to music and a lot of podcasts, with breaks of talking with Matthew. We stopped plenty of times for the kids and for me to stretch so that my joints wouldn’t stiffen and my ankles wouldn’t swell.

Florida Welcome Sign

The coolest part of a family vacation? Family bonding! Until we went to Daytona Beach, Lily had never been to a beach before. The boys had been when they were much smaller, and this story can be read in The Sanders Family Goes South .

It was really fun to see the kids enjoying the ocean and collecting seashells. They will talk about that trip for a long time. We saw lots of animals, climbed a lighthouse, and walked along a pier. In St. Louis, we saw the Gateway Arch, Cameron got a patdown (he couldn’t go through the metal detector because he was on a heart monitor at the time) and we went to a children’s museum. You can read about that trip in The Sanders Family Takes on St.Louis

Family vacations aren’t all about the souvenirs, even though they are nice. I have more pictures and memories than money can buy. I think those are more important. We went to Daytona Beach during the last week of summer break and got back with three days to go before school started. This gave us just enough time to get last minute things for school, haircuts and some fun with friends before Mom kicked everyone out and was able to blog in peace.

While we were in Daytona Beach, we went to Buffalo Wild Wings for dinner and Julian tried hotter wings than he usually eats- my mom heart was thrilled. He loves hot and spicy food, much like me, and he absolutely loved them. There was extra water involved, but he ate them. He said he wanted to try something new and this is a good thing, no matter where you are.

What is Most Important?

Relaxation is key on vacation. That’s the main idea, right? There wasn’t a whole lot of time to relax in St. Louis because we were there over a weekend, but we had plenty of chill time in Daytona Beach. We slept late, sat on the beach or in the pool (at one point, we sat in the pool for hours until it rained) and went to do things when we felt like it. It was nice to not have to run around to get things done for a few days.

Summer is almost here- time to start planning!

Have you and/or your family been on a vacation lately? Have you planned one? Do you have tips? Share them in the comments.

RA and Me Part Two

I shared the story of the beginning of my journey with RA in RA and Me

I’m back for part two. I went back to my rheumatologist in March. It’s a new one because the original married and moved, but the one I got in her place is so incredibly nice.

The Official Check-In

I got a new set of X-rays and labs done to check my joints and various levels in my blood. Those X-rays showed slight inflammatory damage in both hips, but all the other joints are good.

The labs came back great. My liver, which gets a daily beating thanks to the meds I’m on, is back to normal functioning.

I’ve been sober for over two years, so this is fantastic news. However, I’m seronegative for RA, so one of the few ways that my rheumatologist can see anything is through X-rays.

If I happen to have a lot of inflammation when I see her, she can feel it or see an elevated white blood cell count in my labs.

I attempted sulfasalazine (an anti-inflammatory) for a month, but had a delayed allergic reaction. It turns out my sister (who has lupus) is also allergic to sulfur-based medications, but I didn’t know this until after I got sick.

My liver enzymes shot up and I spent a week mostly in bed. I lost a few pounds because I couldn’t eat. I had a full body rash, which was not attractive. I even had to push back my batch writing for that week.

I ended up in the ER for severe right side pain and that wasn’t fun. It turned out I had a stomach bug on top of this mess.

My rheumatologist immediately took me off this medication and I’m never touching a sulfur-based medication again. Yikes.

The Daily Grind

I have issues every day. Some days, it is a struggle to get out of bed. I am either too tired, in a lot of pain, or both. Some days, I feel great and can tackle lots of things.

Over Spring Break, I went with the kids to a silo in a nearby park, which contains 120 steps.

No problem. I walked up, down, and went home. I didn’t do much for the rest of the day.

The next day, we went to Bernheim Forest to see the Giants. They are large wooden structures, but this required lots of walking. We walked a bit over three miles. I was tired when we got home, and my right knee and hip had hurt a bit off and on.

Giant pic

Kids and I at Bernheim Forest, Spring Break 2019

I spent the next day in bed. I was exhausted. Everything hurt and I kept dozing off. I didn’t do much besides showering. Even so, I don’t let this hold me back. I have to live my life and do things.

My immune system is garbage but at least I won’t get malaria. Plaquenil has taken care of that. However, if you’re sick, I’ll probably catch whatever it is. Don’t even look my way…just kidding.

There’s still a lot that I want and need to do. Life doesn’t stop when you get a diagnosis such as rheumatoid arthritis. It changes and some days are tough, but I am not stopping.

My grandfather managed to live a full life despite his medical issues, one being RA. That’s my goal. I want to do fun activities with my kids, yoga, and other things. I just have to take breaks and otherwise care for myself. I have to listen to my body.

I’m trying to see this diagnosis in the best way I can. I have a lot of support, a great sense of humor and a good rheumatologist. Next up is a local walk for autism awareness.

It’s Not Always Easy

I took Julian and Lily with me to the March appointment- there was no school due to the teachers protesting in Frankfort. They were a little bored, but I think they may understand a little more what is going on.

When you’re a kid, it’s hard to see a parent in a lot of pain and/or tired a lot. This is even worse when you don’t get why. They have been a bit more understanding since then, so I guess it paid off.

On the days I can’t do much, I try my hardest to make things as easy as I can on them. I might ask them to help with laundry or other smaller chores, but that’s it. They are used to this because of the migraines, but it doesn’t make it easier.

I move slowly and the boys jokingly call me a turtle. I just tell them that the turtle can’t make dinner if she moves too fast and they get quiet pretty quickly.

Having RA is not easy but I choose to find a way to get through it, even on the bad days.

Are you a parent with a chronic condition? How do you handle it?