As I sit here at my big, takes up too much space in my kitchen, kitchen table with six chairs around it, that I bought on sale years before I had children, I realize and accept that I don’t really need it anymore. I bought it in the first place because: #1: It was on sale, and #2: It had plenty of room for my “future family”.
The only thing I ever knew, without a doubt, my whole life, was that I wanted to be a mom and have a big family. I also knew I did not want kids right away when I was very young because I wanted to get some adventures, partying, and good times out of my system before. I figured I had plenty of time to make it all work out.
As I’ve mentioned before, when we finally decided to grow our family it didn’t exactly work out how we’d planned. There were fertility issues on my end, and we had to use medical intervention to conceive our first. Then, our second came as a surprise, no medical intervention necessary. That had me excited! After our first, I went through a stage where I treated each moment as if it would be my only with my only child, but then number 2 was on the way, and my dreams of a big family were back “on the table”. (Haha, see what I did there?)
Things were hard at first with two very small children, but I knew, and as everyone kept telling me, things would only get easier with time as the kids got older. I was beginning to think I was crazy or just weak, because I swore things were getting harder, not easier! That’s because they were.
Raising kids is hard. The hardest job you’ll ever have, if you do a decent job. It is also the most rewarding job you’ll ever have, and a job you get to keep lifelong.
The older my kids get, the harder it gets to navigate because their differences become more obvious, not just in general, but to each other.
ME: “Ada, go play with your brother.” ADA: “But mom, he doesn’t talk!”
ME: “Ada, Mom is busy, go play with Gus.” ADA: “But he doesn’t play right!”
ME: “Ada, apologize to your brother.” ADA: “He never says sorry to me!”
ADA: “No, Gus isn’t a part of this game.”
ADA: “I had a dream about our family, and….” ME: “Was Gus there, too?” ADA: “No, mom, Gus is never in my dreams.”
ME: “Ada, it’s time to clean your room.” ADA: “I didn’t make the mess, Gus did!”
ME: [After setting a timer at the supper table for 5 minutes and then letting Gus get up.] ADA: “Why doesn’t Gus have to sit at the table?”
These comments hurt my momma heart. They’re not easy to hear. They’re not easy to address…
Kids are literal. Kids are honest. Kids can seem brutal, but kids are innocent. Kids are observant. Kids are like little sponges. They learn and adapt quickly. Most importantly, kids are resilient.
Lucky for us, Ada is all of these things, as well as very kind-hearted and brave, extraordinarily articulate, and has a great capacity to try to learn and understand.
To say things can seem “unfair” in our household is an understatement.
I’m not an advocate for things always being fair in the first place, kids are all different and require different care, but it’s complicated when things such as house rules, which should apply to all, have to be made different and adapted in our situation. To boot, our kids are really close in age, so there really, typically, shouldn’t be much difference in what is expected of each of them. But for us, there is…
I can most definitely see, especially from a child’s perspective, how we seem to give Augustus more attention. The truth of the matter is that we do. We have to.
Each individual child, in any given family, having time alone with their parents together and individually is important. In our family, this is not just important, it is absolutely necessary on a regular basis.
Ada comes to therapy with Gus and I once weekly. I let her participate as much as I can without it being detrimental to what Gus is doing.
I can see how hard it is for her. Gus gets to go to the Sensory Gym where there are swings and slides and foam pits and rock walls. To Ada, Gus is getting to play at an indoor playground, and essentially he is. The difference is that swinging and spinning help Gus to regulate and calm down, while swinging and spinning have the opposite effect on Ada. Adults barely understand sensory processing disorder (SPD), so I sure don’t expect a 4-year-old to. Gus gets to sit at a table and get treats and praise for doing things that seem extraordinarily easy to Ada. Heck, she can do those things! Why shouldn’t she get some treats, too?
While I feel it is important for Ada to see what Gus is working so hard to do, I also think it is important for her to not be in a waiting room or in the therapy environment the majority of her childhood. That’s why we choose to send her to daycare when she is not in preschool and we are at work or therapy with Gus. It may not be the most money-savvy choice, but in our opinion, it’s the right choice.
We make it a priority that Ada gets to spend time with both of her parents individually and together without her brother around. Whether it’s something as simple as getting to go feed the cows at work with dad, or getting to run errands with mom; we make sure it happens. Sometimes she gets to have a lunch date with mom or dad while the other stays at therapy with Gus.
Advocacy & Understanding
That all being said, no one is going to know or understand Gus like his sister. More than once in a public setting someone will say something to Gus or ask him something and be waiting for a response when Ada pipes up and says: “Gus has autism, and he can’t talk.” She doesn’t say it in an irritated or annoyed manner. She says it in a very matter of fact, somewhat proud, and a kind of “Um, hello, you should know this…” type manner.
That’s right. Gus does not talk (yet) and is in fact nonverbal. We as a family have learned to adapt and communicate with him in different ways. Including Ada.
I can tell that it most definitely distresses Ada when Gus is upset and we cannot understand what is wrong. She does her best to comfort him. She will ask our Amazon Alexa to play “Wheels on the Bus” for him. She will turn on a favorite television show for him. She will turn nursery rhymes on and hand him her tablet. She will offer him something to eat. She will give him a hug. More often than not, Ada is met with resistance by Gus. He might swipe what she is offering out of her hand. He might even shove her, pull her hair, yell at her. Nine out of ten times she understands. It’s nothing personal, he is trying to communicate.
Ada has most definitely learned to adapt and play with Gus in a way that is fun for the both of them.
Don’t think Ada is putting in all of the work on that end, though. We work hard everyday with Gus at home and in therapy to learn “appropriate play”. He is getting better all the time.
The Big Question
Will I be getting a smaller kitchen table? The answer is a hopeful “Yes”. Haha. Sorry, sorry…
The big question: Is our family complete? Are we done having children? The answer: I honestly don’t know. I do know my dreams of a big family are not realistic or what’s best for our family now, and I am wholly and fully okay with that.
You see, I look at it in a few different ways…Gus is always going to need me more and on a different level than a neurotypical child. God knew my dream, and while it was presented to me in a different way, it makes sense. It makes sense to me, anyway, and that’s all that really matters.
The reason I brought up the table, and the big family dreams, is because it’s all something I had to learn to accept (also actively have a say in, if that makes sense) due to various reasons and situations throughout my adult life. It didn’t happen overnight. I am, in fact, still in the process. My kitchen table is/was a symbol of that dream.
DISCLAIMER: I am fully aware just how weird I am, but I am not afraid to let my freak-flag fly!
I am ever evolving, and things are always changing.
As always, I truly and sincerely thank you for taking a peek inside my life and my mind by giving this a read.
-AMom’sFaithUnbroken – Amanda
It’s been a while! Like two and a half months since I’ve even looked at my blog. I have so much I should be doing around the house right now since I am home, but it will be good for me to get everything typed out and give everyone an update on life. I know I don’t see family and friends near as often as I’d like to, and you all show us so much love, you deserve to hear what’s going on, too.
Augustus and I are logging 1000+ miles a week going back and forth to therapies at LifeScape in Rapid City and at the school in Philip. As the title of this blog implies, it’s worth it. It’s not easy and not always a lot of fun, but worth it.
Gus does ABA therapy at LifeScape five days a week, and also does speech, OT, and PT there once weekly each. He has speech at the school once weekly, too, and also spends some time with the special education provider at the school once weekly.
Miss Ada is in preschool three days a week, and ends up going to daycare four days of the week. Since Augustus and I are out of town and Dane is at work (not in town), Grandma Lisa and Aunt Emily are our saving grace with this. They make sure Ada gets picked up from preschool and taken to daycare each day. She loves preschool, and loves everything about daycare except nap time. Gus and I have to leave before preschool starts a couple of days a week, so Dane has to stick around to be able to get her to preschool (Again, must praise his employers on being accommodating.)
Ada comes to LifeScape with Augustus and I once weekly on Fridays. At first it was really hard (on her and me), because she felt left out having to be quiet or wait in the waiting room while Gus was working. I can see how what Gus is doing and learning looks like a lot of fun to her. Fortunately, the therapists are great, and we have found ways to incorporate Ada into things and to allow her to have some fun, too. Gus has lunch as part of his therapy, so Ada has lunch with him. She also gets to come along for sensory breaks in the sensory room, which is a lot of fun for both of the kids. She has gotten better and understands better now that she’s been tagging along for several months now.
I can’t believe she will be five in just over a month. She is a fan of everything superhero right now. Her Skye “pups” are her favorites. She is super into “Sam Sandwich” (a Disney short) and has a newfound love for “Ben & Holly” (a show on Nick Jr.) She has also been into the Power Puff Girls, which I can get behind, as they were something I watched as a kid. She can write her name and most numbers, although tends to get a few of the numbers backwards. Her drawing skills seem to improve all the time. She is still talking more than anyone I’ve ever met. She is crazy articulate and clever. I love when she makes up songs to sing to us.
We work hard to make sure Ada has plenty of attention along with alone time and fun with mom & dad.
She is becoming such a good helper. Her tender heart and fierce attitude are seriously an inspiration to me. When her brother is having a hard time, she is the first one to try to comfort him. She will bring him her tablet and turn on some nursery rhymes for him, or find him a blanket, or ask “Alexa” to play him “Wheels on the Bus”, his favorite. She has also come a long way in understanding some of the harder things that we have to deal with regarding Augustus’ behavior. He sometimes lashes out at her, and she has really learned not to take it personally and that most likely he is trying to tell us something and is frustrated about it and does not know how to relay that other than lashing out. My mommy heart aches in the times she says “But Gus can’t talk!” or “Gus doesn’t play right!” Fortunately, most of the time, she is patient with him. One of their favorite games to play is when Ada follows Gus around and acts and plays like he does; jumping, wrestling, squealing, etc. Personally, I think they are perfect for each other as siblings.
Ada saw a dentist for the first time this month. She has always been pretty good about brushing her teeth. Unfortunately, she has such a petite and tiny mouth that all of her teeth are very, very crowded in there. Her teeth look pretty healthy, but on x-ray it turns out she has a lot of cavities and decay between her teeth, especially her back teeth. The dentist told her that: Number one, her teeth are so crowded in her mouth that even brushing and flossing could only do so much, and that number two, a lot of dental stuff is actually hereditary. I was never sure if that was true or not. It sounds like it most definitely is. Dane has a family history of “bad teeth” and has “bad teeth” himself. Poor Ada has been blessed with her mama’s eyesight and her daddy’s teeth. I am shaking in my boots a bit, as Ada is going to undergo a dental procedure this next week at the Same Day Surgery Center in Rapid City. They are going to put her all the way under, as in IV anesthesia. She is so tiny, and it just scares me. While this route was not necessarily totally necessary, it was our best option. She would have had to have 4+ appointments at the dentist to take care of everything that needs done, and the dentist and I felt that would be fairly traumatizing for her. Plus, with the way her teeth are looking now, she will have plenty of appointments in the future. We don’t want her terrified so early in the game. I am of the opinion that if they are baby teeth “Oh well, they will fall out anyway.” BUT the teeth Ada needs fixed are her molars, which she has many years left with. Wish us luck, say a prayer, send us good vibes.
The biggest thing we are working on now with Gus is potty training, and oh boy, it’s an adventure. I must sing my own praises about potty training Ada. I started very early, in fact, too early, and had to wait a bit and had great success when it was time. Gus, now that’s a very different story. First of all, he’s a boy. I don’t care what anyone says, boys are harder to potty train. Then you add in very limited communication, sensory processing disorder, developmental delays, and autism and it’s straight insanity, in my opinion. Plus, he’s a big kid, so a little kid potty just isn’t an option, so we are kind of tied to the bathroom a lot. Truth be told, my bathroom looks like a war zone.
I do have to say, that while I am entirely overwhelmed and somewhat discouraged with the process, I am thankful it is even an option to try at this point in the game. I was not sure if he would be 3 or 5 or 10 or if he would never be ready to try potty training. I am at a point in the process where I am not entirely sure if we are making progress or not. I am confident that one day he will be potty trained, though.
Right now, it’s basically me taking him to a toilet and sitting him there every 40-ish minutes. I put him in underwear right away in hopes he would dislike being wet/dirty. He seemed to dislike it, at first, but now I have kind of been sticking to Pull-Ups because I am beginning to think he just really does not care, and in part because all of his underwear are dirty and I haven’t had a chance to wash them. Ha.
I show him a PECS card with a picture and the word potty on it. I then take him to the bathroom, and before walking in, I show him the card again and get him to look at it and either hand it to me or say something (anything, truly) to acknowledge that we are going potty. Why? Because the real trick in this whole process is going to be getting him to let someone know when he needs to use the bathroom. I was told he could catch on quickly or that it may take many, many years.
Positive reinforcement is HUGE for Gus. His favorite food ever is fruit, especially blueberries. Therefore, I use blueberries for positive reinforcement. He gets one for trying and a few for peeing on the potty. I tell him all the time that if he poops on the potty he gets the entire container of blueberries. Silver lining – blueberries are better than candy.
It’s also hard, because a lot of it is on ME. I have to get him to the bathroom, work with him to try to teach him to help me get his pants and underwear down, and then I physically have to sit his 40+ pound body on the toilet. Surprisingly, he sits on the toilet fairly well most of the time, which I was definitely not expecting. Getting him to keep his hands on his lap and not in the toilet, or flushing the toilet, or playing with anything he can reach is another story. I am also supposed to keep data of every potty experience we have and if he was wet/soiled/dry and if he went and the time, etc. etc. While this will be helpful information, it’s a lot of freaking work and time out of the day. I did a pretty solid job the first couple of weeks, but weekends I tend to give up for two reasons. One, I just want a freaking break. Two, I need to get things done!
He has had some success with peeing in the potty. I have yet to get him to go #2 on the potty.
Like I said, I cannot decide if he is really ready. I know I said I was ready, but at this point I’m not sure that I am either.
The older Gus gets, and the more therapy he receives, the more aware he is. Hallelujah! BUT the more aware he becomes, the more frustrated he becomes in regard to communicating. Therefore, we have had some behavioral type issues regarding this, as well as some behavior we (as in our family and his therapists) truly cannot figure out.
It was recommended I take him to the doctor to rule out any type of health concern that may not be obvious to us. This included a trip to the dentist, which actually went over phenomenally well. They told us with him liking to chew on things and using chewelry that they were surprised how straight and healthy his teeth were. They chose not to do x-rays or a cleaning or anything as not to totally traumatize him, especially since things looked good and he is only 3. Baby steps. He was cleared of any underlying health or dental concerns.
Just take a minute to think about this…Can you imagine how hard and frustrating it would be to be a small child and be in pain or discomfort and not be able to find a way to let an adult, parent, or someone that could help you know? It’s heartbreaking to me. Whenever he get’s sick or seems to be not himself I really worry. Thankfully, I am his person and spend basically all of my time with him so no one knows him as well as I do.
It’s also very hard when your child physically harms you. It’s a feeling that’s hard to describe. I don’t mean when a toddler or small child tests the waters and slaps or hits you. I am talking about when Gus is in a mood and struggling and hits me in what seems to be anger or frustration. I have been slapped, scratched, kicked, hit, and often get my hair pulled. He will sometimes grab my glasses and seemingly try to crush them in his hands. It is very hard not to take it personally. He is not mad at me or hurting me out of spite, he is trying to communicate.
When this happens, he often grinds his teeth and puts his hands into fists and makes a lot of not so happy sounding noises. Sometimes, it is pretty easy to figure out what’s going on. Perhaps he is being denied access to something he wants. Perhaps, he wants something or needs something and cannot tell someone. The other confusing “perhaps” is that perhaps it is an automatic behavior.
As you are probably aware, persons with autism almost always have “stims”, or things they do that just make them feel normal or “regulated”. For instance, Gus flaps his hands and does a lot of jumping. Those are stims. When a behavior continues to happen and there is no obvious trigger, one starts to wonder if it could be automatic behavior, kind of like a stim.
We are in the process of working on figuring a lot of that out. There are certain tests/experiments (one being a “functional analysis”) we will go through to try to see if we can address some of the “problem behaviors” that we cannot link to denied access or a want or need.
I have a full-time job in being a mom (as all moms do), but I also feel like I have a full-time job in traveling and working in therapies with Gus. I am gone from home a very minimum of five hours a day, most often longer, and spend money in doing so, not make any. I have to have beyond amazing organization skills just to remember to bring everything we need to therapy (double the things now that we are potty training), as well as keeping appointment times straight, and everyone in the family’s schedules running smoothly without conflict. Thankfully, I have always been organized. All along I was being prepared for this life, I say.
I really struggle to keep up at home. While we aren’t home but some late afternoons and most evenings, it takes no time for the house to be in total disarray. We have a sensory seeker up in this bish. He lives for messes and to play in them. He gets into absolutely anything and everything he can. Disorganizing and throwing things on the floor are a favorite pastime of his. The bigger and more able bodied he gets the crazier it gets. I am not talking about regular “kid getting into stuff” business. I am talking sensory seeking full body involvement havoc, here. I am talking a literal curtain climber! Anyone that has been over to our house for any length of time or watched him for a bit will understand this to an extent. It’s seriously 24/7 other than when he sleeps, and he only sleeps when he passes out from absolute exhaustion. I have to keep an eye on him or have him in hearing distance at all times or deal with the consequences.
As I mentioned, I have always been huge on organization, and having a clean and organized home really helps my morale, but I have had to chill on this aspect more than I want or would have ever expected to.
People, I am straight exhausted both mentally and physically basically the majority of the time. But you know what? I’m okay. Do I have some really bad days? Hell yes. Do I have some really good days? Absolutely. I’ve got this. I can truly say that I have more good days than bad.
Shout out to those of you I vent to when I need it.
I finally did it. I knew my husband would still be home before leaving for work in the early morning hours, so I slept in my workout gear and woke up bright and early on a Monday morning to attend my very first spin class at the local gym. I wasn’t too nervous, as I already knew everyone that would be attending, and know the instructor pretty well. (Small town livin’.) I was excited for the opportunity to get my workout on early in the morning, three days a week, with the accountability of showing up to exercise with others.
You see, I am not new to working out and fitness. Since March of this year (2019), I have completed several workout programs; some of them quite advanced/intense. I have worked out fairly regularly, as in anywhere from 3-7 days a week, only taking a couple of weeks “off” here and there, since March. I have done quite well with eating clean and partaking in an 80/20 diet. I drink at least 90 ounces of water daily, most every day. I have lost weight and really toned up. The reason I mention this is to point out that it wasn’t like I was totally unprepared and out of shape to take on trying a spin class.
I showed up to class a bit early to get a bike set up and see just how it would all work. Everyone was super nice and knowledgeable. BONUS: Your first time trying a class at the gym is free! I was told to definitely take it easy, as I’d be using muscles I may not be used to using, and that I should feel no shame in taking things a little slower, sitting down rather than standing, keeping resistance down, etc. when it got to be too much for me. They made sure I knew not to push myself too hard, and made sure my bike was as comfortable as possible for me.
Once we got started, there were a few times I sat when they stood, and kept my resistance down when we were instructed to turn it up. The sweat was pouring, the music was playing, and I was thoroughly enjoying myself. Eventually, my legs did start to burn, as to be expected when working out. I then noticed my right leg was hurting me a whole lot more than my left, but I attributed that to the fact that my back was out and my right leg was a bit shorter than my left, so I was having to reach just a bit further on that side when pedaling. I always push myself, whether it’s a workout or any other given task in life. I am an all or nothing kind of gal. I do feel I pushed myself in class, but not a lot harder than I do in my other workout programs.
After a cool down and some upper body stretches we got off of our bikes for some leg stretches. Before I got off of my bike, the others warned me to be careful because my legs would be wobbly. They weren’t lying! I just about went down and had to use my bike for support, but I was able to do my stretches and change out of my workout shoes and into my street shoes.
I headed out right after class knowing I had to get home and showered quickly in order for my husband to get to work and to take my son to speech/OT therapy at the school. I walked out of the gym and went to step off the curb to get to my vehicle and fell to the ground with a loud crash as my metal water bottle hit the asphalt. My legs were tired! I just hoped no one saw me, and got up as quickly as I could and got in my car and headed for home. I wasn’t injured. I caught myself with my hands. No harm done; at least not from the fall.
I wore my fitness tracker/heartrate monitor to class. I was impressed by my calorie burn, and had done workouts with fairly similar results before. I was pleased.
I took my son to therapy later in the morning, and after that, I knew I had to keep moving (or so I thought) to keep my sore muscles from getting stiff. I went up and down the stairs to my basement at least 12 times washing and drying laundry and putting said laundry away. Granted, I had to take the stairs one at a time, one leg at a time, and very gingerly; holding onto the wall or the railing. I also deep cleaned the kitchen and living room. I kept busy all day, and drank lots of water.
Later in the day, I received messages from the instructor and fellow spinners asking how I liked class. I had nothing but good things to say, other than that my legs were sore. Sore is kind of like a badge of honor after a workout, though; am I right? It means you pushed and should see results over time.
Tuesday morning I woke up VERY sore and decided I would go to the chiropractor to get that straightened out. I was having a lot more soreness in my right leg than my left. My back was out pretty badly, and it felt good to get that back in place.
I took my daughter to preschool and had a really hard time getting in and out of the car, and felt like I was going to collapse taking the three steps to get in and out of my house. Ow! Then, I noticed both of my upper legs were swollen, my right far worse than my left. I pushed through, and took my son to his appointments out of town. I did try taking 3 or 4 – 200 mg ibuprofen, but it didn’t even touch the pain.
Needless to say, I didn’t sleep much, if at all, Tuesday night. I was in pain; so much so, that I couldn’t rollover or move my legs in bed without excruciating and unbearable pain. I am a stomach sleeper, and could not sleep on my stomach because by that time my legs hurt to the touch and with any movement at all.
You’d think at this point I’d be concerned. I was a little, but at the same time thought maybe I was just a wuss and kept thinking it’d feel better in the morning.
I woke up Wednesday morning in pain at rest and even more so with movement. I could barely bend my knees due to pain and swelling. I couldn’t step over even the smallest things on the floor. I had to put one hand on the toilet seat and carefully lower myself to use the toilet and would cry out in pain with having to sit down anywhere. I had trouble getting my underwear, pants, and socks on. My husband was able to accompany me to take my daughter to preschool and my son to appointments out of town. I was glad, because I was afraid I would fall carrying my son, or that he would get away from me and I wouldn’t be able to catch up. I was starting to get a little worried. This definitely wasn’t normal. Did I pull or damage muscles?
Getting into the car was a great feat in itself. I had tears streaming down my face and had to lift my legs in. Wow, now I was getting concerned.
My husband and I dropped our son off at his appointment, and went to grab some lunch. Before we left the facility to grab lunch, I needed to use the restroom. I noticed my urine had a very darkish red tint to it. Hmmm…
After lunch, I hit the can again, and my urine looked even worse-DARK BROWN. I knew I was not okay, as by lunch I had already drank 90 ounces of water, and even added some apple cider vinegar to some that morning, just to see if it would help my pain. I also took a bunch of ibuprofen that morning with absolutely zero relief.
I told my husband I definitely was not okay and contemplated whether I should go to an Urgent Care or just hit the clinic when we got home. You see, I do not have health insurance, so I wanted to keep this as affordable as possible. Therefore, I decided to call the clinic back home, and was able to get an appointment for right when we would arrive back in town.
I shared my symptoms with the nurse and PA and gave a urine sample (dark brown, ew) and a blood sample, and waited for results.
The first result I was given was that my urine had “a lot of blood” in it. I didn’t know what that would mean, but I was told to sit tight and wait for my bloodwork results.
Apparently, some of my blood lab readings were so high that the facility’s machines could not read them. Normally, the blood would be sent off and levels taken at another facility, but that facility was closed for the day, and there is a 2 hour limit on when certain levels can be read in the blood. Therefore, we never got an exact level on a few things, but knew they were concerning.
This is when the term RHABDOMYOLYSIS (aka rhabdo) came up.
Rhabdomyolysis is defined as: A breakdown of muscle tissue that releases a damaging protein into the blood. This muscle tissue breakdown results in the release of a protein (myoglobin) into the blood. Myoglobin can damage the kidneys.
This causes your creatine kinase (CK) levels to rise, as well as your liver enzymes.
Per my studies, a “normal” CK level is 38-314 U/L. A CK of 1000 indicates rhabdo, while a CK of 5000 indicates a severe case of rhabdo.
All we knew was that my CK levels were 2000+, as that is what the machines at the facility maxed out at. Not to mention, this was even after trying to dilute my blood sample.
They really wanted to hospitalize me and get definitive lab numbers in the morning, but I refused, agreeing to get IV fluids and IV pain medication outpatient and return in the morning. I was told they were VERY reluctant to let me go home, and that the only reason they were even allowing me to go home was because my kidney function looked okay per lab results. I had to promise to come back immediately that night if pain worsened etc. etc.
I received 3+ bags of IV fluids and supposedly some morphine. I say “supposedly” because I never felt it hit if they did administer it, and was in so much pain I didn’t pay any attention to what was going on around me. If they did give me morphine, I didn’t get an ounce of relief. I was lying there crying, and hoping I would go home and feel better in the morning.
I got home sometime after 9 PM. I did end up calling the nurse later that night because my legs ended up being even more swollen later on. I was told it was likely from all the fluid, and that I could come in if I wanted, but that there was really nothing to do differently than we already had until we had definitive lab results. I was good with that, and stayed home with strict instructions to come in the next morning for repeat labs.
I felt like my legs were logs (upper legs) on top of toothpicks. It was just ridiculous and so damn painful. My husband had to help me on and off furniture and into bed, etc. Needless to say, I didn’t sleep a wink. I physically couldn’t.
Morning came around, and my husband and I took our daughter to preschool and went back to the clinic where there were already orders in for me to repeat my labs. My mom graciously agreed to take our son to speech therapy at the school while we went to get some answers.
The doctor came out to the waiting room and asked us to come back to a room. He gave it to me straight and said I absolutely needed to be admitted, no ifs, ands, or buts, about it, and that I most definitely had a case of exertional rhabdomyolysis. My urine was no better than it was the day before, even after the IV fluids the night before, and my labs were not good.
At this point, I required a wheelchair just to get to my hospital room. The doctor gave the nurses orders to start very extensive IV hydration. They, in fact, questioned him and said “Our machines won’t even put out that much.” He told them to put an IV in both arms. Therefore, I was connected to 2 IV poles running full bore.
The doctor came into my room after I was settled and asked how I felt about a catheter. I was all for it! I did not want to have to get up to use the bathroom with so much pain and have to navigate with 2 IV poles.
Needless to say, no sleep that night. I was SO uncomfortable and in a lot of pain.
The next morning (Friday) they took repeat labs. My urine was still brown. My labs had worsened. The doctor informed me not to be “delusional” or “get my hopes up” thinking I would be going home anytime soon.
It was homecoming in town, and I did convince them to let me go watch the parade in my wheelchair, IV pole in tow with my fancy hospital pants and urine bag to boot, that afternoon.
I suffered a TERRIBLE headache late Friday afternoon and into that evening. I could not utilize Tylenol or ibuprofen because my liver enzymes were so high. Therefore, I was given a dose of hydrocodone with no relief. I was later given more hydrocodone with no results. I was then given tramadol with zero relief. I was then given a double dose of tramadol, and finally had relief, although I don’t know if it was because of the tramadol or that the headache was just over at 3 AM.
Saturday morning, labs were taken again and had again worsened. My urine was still dark, although not brown. My doctor consulted with a kidney specialist, and they made the decision to back my fluids off, and I was therefore down to just one IV, although they kept the other intact, just in case. They attempted to flush the IV site not in use later in the evening, and it blew. So, I was down to just one IV in my left arm.
I did sleep a tiny bit better Saturday night, although didn’t sleep much.
Sunday morning I woke up in a bad mood. Can you blame me? A CNA took my vitals, as they did many times throughout the day and night, but this time the blood pressure cuff caused my IV to blow. I got sick of waiting for a nurse to arrive, so I just took the damn thing out myself. I then got a little owly with a couple of CNAs, which my husband found hilarious and says he wished he had recorded. I will not go into detail, but my owliness was warranted. They then had trouble getting another IV in, and I ended up with one in my right hand. Great.
That evening I was able to hobble around on my own, and even sat in a chair for a while.
I finally slept fairly well for my circumstance that night. I was even able to sleep on my side and stomach.
Monday morning my labs were taken again. The doctor came in and said there was a mixup and that my labs didn’t get sent off for absolute counts. I tell you, I about jumped out of that bed and tackled him. Argh! He said the labs they could get in-house were trending downward nicely, and that once he saw my total counts after the delayed send off, if they were trending down, too, that he would let me go home.
My catheter was removed, and I was able to use the restroom on my own. My pain was down considerably, and I mostly felt just sore and very weak.
That afternoon, the doctor stopped back in and told me my total counts were trending down nicely, and that he would let me go home if I promised to rest and push fluids until a follow-up in a week. I agreed.
I think a lot of times they make you stay in the hospital until your CK levels are down to 1/10th of what they were at their peak, but they cut me a break. (Remember, no freaking health insurance here.)
I missed my kids a whole lot! I did not allow them to visit, because I did not want to scare them or have them catch something, since I did have a roomie. I did video chat with them a couple of times, which only made me cry a little. They faired well without mom. Dad was able to stay home most of the time (awesome boss) and grandpa & grandma and aunts were willing to pick up the slack. For that, I am forever thankful.
I so appreciate the prayers, flowers & gifts, the meals after home, and everyone that came to visit or messaged me and offered a helping hand and encouraging words.
The odds of getting exertional rhabdo are 0.016%. I guess I should buy me a Powerball ticket.
I did ask my doctor if he thought spin class was the culprit. He told me that yes, I pushed my muscles too hard for too long, and likely used some new muscles that weren’t as conditioned.
Do I plan to hit up spin class again? Yes, when and if I am able to again. Me, my luck, and my body are the only things to blame for this. It’s very rare. It’s just my luck.
The outlook? I am not sure. Some say their muscles and endurance are never quite the same after rhabdo, and some make a full recovery.
Right now, my legs are very weak, and I get tired and wore out very easily. I have been doing my best to take it easy, and the state of this house is driving me bonkers! I am a clean freak, and this has put that to a halt. My husband has been kind in helping with supper and bedtime in the evening. The kids…well they’re kids. They don’t understand that mommy needs rest. We are doing the best we can.
I guess it’s safe to say that no one can ever say I don’t give things my all.
For a little perspective: Remember how I mentioned a CK of 1000 is considered rhabdo and 5000 severe rhabdo? Take a look at my peak labs below. I was absolutely SHOCKED, and am so thankful my kidneys and liver held on, and that I did not wait any longer to be seen by a doctor.
While this condition is quite rare, and more often happens due to crush injuries, snakebites, and drug and alcohol abuse, please listen to your body! I do not wish this condition on anyone.
ADDENDUM: This Wednesday (day 2 at home) I decided I could handle taking my daughter to preschool and driving my son to therapy 80 miles away. My son has a half hour break between therapies, so we were playing outside at the facility in the fenced in playground area. I was sore and weak, but managing. Some kid decided to open a door that was not in my line of sight. He then looked at me and said “He just went inside.” very casually. Not to mention, his teenaged sister was standing right there with him, but did nothing to prevent this. Anyway, I go trucking inside and don’t see my son anywhere. He is a bolter, and has zero fear or safety awareness. My legs are killing me. I’m hobbling around in a panic. I cannot find him! I am so worried he walked out the automatic front doors of the facility and is outside somewhere. I met his ABA therapist in the hall, and she helped look for him and reassured me we would find him. Pretty soon, it was a facility wide search. Everyone was calling his name and looking for him. His ABA therapist eventually found him in a dark room in a corner playing with some toys. He just looked at us like “What’s all the fuss about?” I sat down in the waiting room and cried. I cried in relief. I cried in pain. I cried in frustration.
Ada & Augustus decorating eggs at their grandparent’s house for Easter.
We started our Easter festivities by decorating and dying hard boiled eggs at my parent’s house. Ada has the process down and speeds through her decorating. Augustus usually has little interest in the process and would prefer to eat the eggs; shell and all. While he did try to take a few bites, I was very proud of him, as he sat on his dad’s lap and later my lap and really paid attention and even drew on some eggs himself.
After decorating, they (we) got to find our Easter baskets from Grandma & Grandpa hidden throughout the house.
The kids received lots of candy, some outfits, shoes, and lots of other goodies. Ada’s favorite is always the candy. She only spilled her box of nerds twice. Ugh. Augustus’ favorites were probably the bubbles and a light up ball. (We work with bubbles a lot in speech therapy.)
Ada & Augustus popping bubbles at their grandparent’s house.
Augustus was happy and awake and ready to take on the day when I woke up Easter morning. He always wakes up happy, and I love that.
Now, Ada is a completely different story. First of all, I had to wake her up. She has been going through a phase with sleep. She will sleep very well a few nights in a row, and then for whatever reason, will fight sleep, tooth and nail, for a few nights. She fell asleep very late Saturday night, so wake up this morning was not easy.
Ada is always excited about church, and still was this morning, but she was weepy about everything. She REFUSED to wear her pretty Easter dress from grandma, or any dress for that matter. She wanted a shirt “with just one thing on it”. Okay… Dresses are “too itchy”. She could not be forced, bribed, or convinced in any manner, and we were out of time. “Pick your battles.”, as they say. She cried because her dad offered her some money to take to church for the collection plate. She cried because her dad asked her if he should try to catch the Easter Bunny for her while she was at church so she could see him. A morning of tears all around. Gah!
The United Church in Philip, SD, Easter Sunday 2019.
Grandma, my sister, and my sister’s daughter picked us up for church. It was a great sermon, and the church was beautifully decorated. Ada was tired and very clingy. Half of the sermon I was trying to hold both kids. Eventually, Gus migrated over to grandma for the latter half of the service. He was shoeless. They fell off. Oh well.
Augustus at church.
As grandma & Augustus arrived at the table to take communion, Augustus decided to grab the remaining half loaf of bread off of the table and attempt to eat it. Thankfully, Aunt Emily’s reflexes were top notch, and she got it from him before he took a bite. (Emily was behind grandma & Gus and I was behind grandma & Gus and Emily & Harley.) Gus was mad, he wanted some bread. I didn’t pack a snack, either. Normally I do! Grandma got him calmed down, and he was good other than getting a little wild towards the end of service and giggling up a storm.
Grandma, Ada, and Harley at church.
When we got out of the car to head inside the house, one of Augustus’ shoes fell off again. The moment we got into the house and up the stairs he faceplanted. He hit the ground hard with a very loud “thud” there was blood on the floor when I picked him up. He had a bad nosebleed. He got blood all over his outfit and me and himself and the floor. My poor boy! Of course, the Easter Bunny had stopped by while we were at church, and Ada could see eggs he had hidden. So, we had to slow her down and have her wait until Gus was done bleeding and feeling better. It was stressful, and I may have shed a few tears myself from the stress and because I was being selfish and feeling bad for myself because Gus doesn’t enjoy the usual festivities and excitement of holidays… Pity party over!
Gus wanted to calm down and relax and watch TV. Ada went and found the eggs the Easter Bunny hid, as well as her Easter basket.
We gave Gus his Easter basket, which had a soccer ball, and he was VERY excited about that ball.
Augustus and his new soccer ball.
Ada was all about the candy!
Ada and her M&Ms in her “not itchy dress” and shirt “with only one thing on it”.
Put simply, they are all a way of saying to “get it together” and find balance in your life.
Balance – a condition in which different elements are equal or in the correct proportions.
Balance is my favorite word in the English language. If we can find it, we can live a meaningful and fulfilling life.
But why is it so hard to find, and even harder to maintain?
I can’t answer that. Can you? It’s something I have struggled with since as far back as I can remember.
I truly strive to go above and beyond in almost everything I do. My problem is that I get too focused on what is requiring the most attention at the time and fall behind on everything else, and my ducks start wandering off, get lost, and then there is a panic or pity party (sometimes both) generally leading to making things worse and creating more problems.
I know this about myself, I can see it; so why do I keep experiencing it in a continuous loop?
How can I fix this? Do I need to let a few ducks fly so I can focus more attention on the others? Can we truly “have it all”?
I don’t know. I think life is one big balancing act, and we spend most of our life trying to find our balance…and we lose our balance All. The. Time.
It seems to be very common for people to reach a certain age and realize they are not where they expected to be or wanted to be and maybe don’t even have some of their ducks in the pond yet. That is normal, and it’s totally okay. I say that, I know that to be true, but I still struggle with it. We all do. The answer is in having the attitude and willpower to look at things realistically. The grass may be greener on the other side, but it also may be fertilized with bullshit. You see what I am saying?
We have to learn to expect the unexpected; and for people like me, that really sucks. I like plans and details and structure. Although it is happening slowly, I am learning to take a step back and let some things go for the sake of my (and others) sanity, although it is an everyday struggle. Things gnaw at the back of my mind, and sometimes instead of facing them and correcting them I find something else to focus on, even if it’s not a good thing, and I know in the back of my mind I am only making things worse.
Taking Steps in the Right Direction
I have often shared how overwhelmed I feel and that I sometimes feel like I am drowning. I am happy to say that I feel like I do have my head above water now, even if I do go back under here and there and have to come back up gasping for air. In other words, I still often lose focus and colossally mess up. I am pretty sure it will always be that way, but maybe we can get the “colossally” part out of there.
I AM A WORK IN PROGRESS
I am my own worst critic. I am very good at owning up to things and accepting consequences for my actions and being honest. Those are attributes I take pride in. What I am not good at is accepting that I make mistakes and mess up. I suffer with guilt, which is probably my least favorite of the human emotions.
Guilt vs Remorse
Guilt and remorse are very different.
Guilt is geared toward self. Guilt is paralyzing. Guilt is heavy. Guilt is fuel for self-destruction. Guilt is necessary, but nowhere you should stay.
Remorse is awareness. Remorse is aimed at the action that took place, not self. Remorse is where we need to transition to from guilt. Remorse is fuel for constructive action.
While I am good at showing remorse on the outside, I keep guilt on the inside, and if that doesn’t change it will eat me alive.
I am not a bad person. I am a very empathetic person. I am human. I make mistakes. I own up to my actions the best I can. I am learning. I promise you that. Even if it takes making the same mistake one hundred times before I learn, I will get up, own my shit, make things right, learn, and Let. It. Go. Forgiving myself is the duck that needs to take some priority right now, but I will not let the other ducks run amuck.
Keep My Eye on the Prize
I’m forgiven. You’re forgiven. Now forgive yourself.