Well, that poll was a real stinker! I guess I will be writing for myself. That is what it is anyhow. A time of self-reflection. An online journal or diary, if you will. Today I have been staring at a computer screen off and on (more on than off) for the past 9 hours. I changed my profile a bit, linked to Facebook and Twitter, and wanted to thank those who responded to my poll (Thanks NO ONE)! However, that shall not discourage me. Follow me, if you choose, be a quiet bystander, or a vicious troll. Ta for now – my eyes sorely need a break!
Being who I am I love to analyze myself. My analysis is mainly of who I am or what is occurring at the present time, near past, or close future. If I do think of the distant past, it is mainly terrible memories – when something bad happened – with a few happy moments intertwined.
My older sister has moved in with my parents to be the caregiver of my mother since my mother is wheelchair bound. Being around my sister, I start remembering the past more. I am not recalling specific events but mainly feelings of the time. I am putting together pieces that help me realize why I was so quiet, why I holed myself up in the room most of the time, why I did not seek my parents help for most of my issues. I was seen as the good child who didn’t need help. I probably could have used more direction in life. However, I turned out alright.
The more the family unit of my mom, dad, sister, and I are together the more I feel the past. It is amazing. It is not sad or happy. It is just awareness and my eyes are wide open.
Despite my pride for finishing that hard-as-hell circuit training class on Monday, my body was not very happy with me. When I decided to go back to working out and joined a gym after my surgery, I told my husband (and myself) that I would ease back into it. That is what I had been doing with beginner’s Zumba and beginner’s Yoga, the exercise bike, and very little (due to lack of fitness) elliptical. Monday’s workout was way too advanced. It was not easing in but something I may hope to be able to do in a year’s time when I fully recover from ACDF.
Monday night I could already feel the pain beginning while trying to sleep. By 4 am (my ‘wake-up and begin work’ time), literally every muscle in my body ached. There were muscles that no matter how in shape I was I must never have worked out. The most striking is whatever muscle is from the elbow to the wrist. I have never exercised that muscle and I’m not sure I want to again! My neck muscles, shoulder muscles, back muscles, stomach muscles, glutes, quads, inner thighs, calves all hurt like hell all day Tuesday. I felt like crap and had to take a nap after work. I still felt crummy when I woke up from the nap.
This morning my muscles tamed down a bit but definitely not enough to do any sort of exercise besides walking Roger to school and back. Fortunately, I had a massage booked from a Groupon and that helped immensely.
Tomorrow I am going to attempt gentle yoga. I know I can always go into child’s pose if need be.
* An aside: I get an inspirational quote in my email daily. Today’s rocked and I want to share it with everyone.
“Wrinkles should merely indicate where smiles have been.”
I keep getting notifications on Facebook about how long it’s been since I’ve updated my page. I update my page whenever I update my blog. After much thought, I was contemplating stopping the blog altogether and posed that question on my page. One individual said I should continue writing. So, I decided to give it a go today and see where this takes me.
As I was setting up my computer to start this, my eight year old son comes up to sing me a song he had just written. It included guitar solos. After his private performance to me, he asked if I could take a video. The song was over eight minutes long. He is now in the process of writing a shorter song for me to video. Earlier today, he was drawing evolutions of his own Pokémon. He has so much creativity and motivation! Of course, in my mind, I compared it to my lack of creativity and motivation.
The end of last week I decided to create a inspiration/vision board. At first, my goal of the board was to promote weight loss/fitness and positivity. As I added things, I realized other aspects of me I wanted to shine again: being excited, being imaginative, remembering to give myself some breaks. I had put it off for some time but had an opportunity to work on it when my husband took my son to the movies. For about an hour and a half, I focused completely on the board (along with the background music of Hank von Hell’s solo album). I was embarrassed to tell my husband what I was making because I knew he would find it silly. I found it kind of silly before I actually created it. The pic is cut-off in parts, but you get the gist: vision board.
I’m off to listen to the new song and enjoy my day with my son.
Stress has been eating away at me this week. I wrote a quick list of my stressors hoping it help with my stress level. Yeah, no.
Currently, like many folks, a big stressor is financially-based. We have had some health issues this year and even with medical and dental insurance we are spending oodles. On top of that, we need a new fence. The wrought iron fence that was here when we bought the house is incredibly rusted. In some areas, you can push your finger through the rusted areas and disconnect the fence. We have put down half the money and just waiting for our place in line. A fence around an entire property that is not shared with neighbors is a huge expense. Both of our neighbors are fence-less. This morning our downstairs TV died and our dogs both getting a badly-needed grooming. On top of that the pile of expenses add the amount it cost us to put my niece and her son up at a hotel for a week. The money is all going out before it has a chance to come in.
My next stressor is my life schedule. I love having a scheduled routine. I love putting my plans down on calendars. However, I do not like the back-to-back-to-back schedule that I will be facing in October (and probably through the end of the year). Rob is having two procedures in October and, possibly, a third in December. Besides the procedure dates, there will be post-op appointments. In addition, I still have my post-op and x-ray appointments. On top of that add Roger’s appointments at the orthodontist for an expander. I just realized that we all need our flu shots too. And, of course, we have Roger’s weekly OT, Swimming, Baseball, and Tutor. He also has nightly homework that I need to help with. I also signed up to be Room Mom Helper and trying to fit in volunteering at the school. Finally, I have my full-time work schedule. Just typing that all out stresses me out AND exhausts me!
My third stressor I listed under the category of FOOD. Then, I decided to add a slash and put weight loss. That reminds me that I am also trying to keep exercise and house cleaning in my schedule, as well as preparing dinner (Rob is usually the cook). As my blog stated yesterday, food/eating has been a life-long stressor since I was called “tub of lard” in elementary school. Kids are wonderful, eh?
My fourth stressor is work. Work has been overwhelming lately. I love my job and my colleagues. I actually prefer when there are projects that are due. However, returning a few weeks ago from my medical leave, I still have have back pain on and off. My supervisor would understand my need for breaks still. BUT I feel obligated to get the work done quickly and accurately. That is just my thing. I guess work is not the stressor but my expectation of myself at work. This morning I woke with terrible pain between the shoulder blades. This is an area that is known to flare up post-ACDF surgery. I need to be kinder to myself re: work (and life).
I usually don’t unload as much as I did today. My little sheet of paper lettered A-D with subheadings was just not doing the trick. I am hoping getting this all out of me will release a teeny bit of the stress. Re-reading this blog, I guess my only true stressor is my EXPECTATION of myself.
Totally non-sensical title. I didn’t want to put a title like: “Beyond Exhausted” for the umpteenth time or “Feeling the pain”. But that is where I am at today.
When I went to bed last night, my back/body was in so much pain that I took Tylenol 3. I have only a few left, so I must ration them! I probably should have gone for the muscle relaxer since I awoke at the same pain level. I am sure the pain is not helping my energy levels. I am exhausted. I have done my squats, arm exercises, and, currently, riding my bike. I plan on jumping in the shower after this and am hoping that wakes me up some before Roger gets home from school. I always need energy for that!
The past week or so I have fallen off the logging food/eating healthy cycle. If I don’t log, it usually means I am eating things I’d rather not log! Also, with the new work schedule and things popping up at Roger’s school, I have missed some of my exercise goals. I know I cannot be perfect all the time but I know the exercise does help me mentally as well as give me more energy. You may have realized I was not cycling as much due to the lack of blogging. Again, I do realize that these posts do help my mind settle down a bit.
I know most people always start their diets back on a Monday. I hate being that cliché but my husband’s 41st birthday is tomorrow. That means a delicious dinner tonight. Tomorrow, drinks and cake will be devoured. Today and tomorrow I will log my exercise on MyFitnessPal but will go back to strictly logging my food on Monday, cliché and all.
One goal I have met is walking over 10,000 steps every day this week. YAY for me! Today I am not confident I will reach that goal since it’s pouring out but will try going up and down the stairs a bunch today. I do have to clean up the house a bit anyhow. That should help with my step goal.
Another goal I have been keeping is my squat challenge. Today was 160 squats. Tomorrow is the rest day. I had been planning on resting my body on the squat rest days. SO, I am not sure I will be on this bike tomorrow or back on it Monday.
Thanks for all the support!
With my early morning wake-ups, I decided to ask my job if I could make a schedule change. And, as always, I sent them my schedule for the following week on Friday. The big change is starting work at 4 a.m. I know to the bulk of you that sounds crazy. However, after last’s week’s early risings, I was starting my work day between 3 and 4. I am an early morning person and had much more focus and energy working early. I did not have my afternoon slump at my desk either.
Today I worked from 4-6, got Roger ready for school and had some time together before school, and finished my work day at 11:40 am. Again, nutso to some, but great for me. I try to be in bed by 8:45 and get 6 hours of sleep (or more). This weekend made me realize that over 7 hours is worse for me than only 4 hours of sleep!
I am now riding the bike post-work and, if I ever want to take any exercise classes, I won’t have to make up work time. These hours will be great for the gym I joined that is opening in November. By that time, most or all of my physical limitations from surgery should be lifted.
Of course, with upcoming doctor’s appointments and such, the work day will not always be done so early. BUT I won’t have the worry of when I can make up my work hours or have time to spend one on one with Roger and Rob!
The previous two days I skipped my stationary bike. Friday I felt horrible and my legs and body were hurting. I think I was progressing too far in my workout. Saturday I had intended to be my full body Day of Rest. Today I am back on the bike and will be back to the squats (I challenged myself to a 30 day squat challenge).
If I felt bad Friday, mentally I felt awful Saturday. Uncharacteristically, I got 9 hours of sleep. When I saw that I was amazed and thrilled. The rest of me was not. I was more tired than on days I get a few hours of sleep. I could not wake up at all. I was in a constant haze. I drank copious amounts of coffee that did not help. I was in a terrible mood too. I was depressed, impatient, and very antagonistic. Those with depression may understand this but when my husband asked me why I was depressed and there was literally no reason that I was depressed but just in that sinking feeling. However, that answer never seems to be satisfactory. It is odd I was so down. I had a denied insurance claim from my surgery since the hospital used some out-of-network providers. Supposedly that is common, but seeing a “YOU OWE $21,750” EOB a month ago was devastating. Yesterday, the reprocessed bill was updated on the website and we owe nothing. That should have put me in a stellar mood.
Well, today I am in a stellar mood on 4.5 hours of sleep. I am on the bike, blogging, and enjoying the morning. I am super happy that we get to proceed with the new fence that was on hold due to the medical bill above. Today I know life is good and that those little dips in mood can easily turn around in a day. My body and mind feel rested and ready for this week.
Nope, just don’t feel like blogging today. I am cycling away but not in a communicative mood.
Come back tomorrow, please.
I get an email with an “inspirational” quote each day. Today’s quote, by H.G. Wells, is “If you fell down yesterday, stand up today”. I rated that 5 stars. You can rate the quote each day as well. I usually give 3 or 4’s, rarely 5’s, but definitely have given 1’s and 2’s.
I know he wasn’t speaking literally about falling. However, this quote made me think of a college philosophy professor I had. He spoke about a Laurie Anderson song’s lyrics,
“And you don’t always realize it, but you’re always falling.
With each step you fall forward slightly.
And then catch yourself from falling.
Over and over, you’re falling.
And then catching yourself from falling.
And this is how you can be walking and falling at the same time.”
I think back to this quite often. He probably does not realize how that one itty bitty thought affected me all these years. I cannot recall his name or I’d let him know!
Today, I also saw a FB post by a yoga teacher by whom I have taken a few classes. It seems to tie in so well. I’m going to have liberty with the it and not cut and paste verbatim:
There was a conversation about how, as we age, time seems to fly by. We can all relate to this I am sure. One moment it’s summer and the next you are hanging up Christmas stockings. One said ‘you know why that is right?’ He explained that when we are children we notice everything and as we age we just stop noticing. Everything flashes by because we miss the details. A child is completely enthralled by how a stapler works and the beauty of a color of a flower. Babies are enamored by the way their hand looks in front of their face or by someone’s smile. Toddlers genuinely became excited by how a ball bounces and are in awe of how blades of grass feel beneath their feet (except for sensory kiddos like my son). As we age these things lose their shine. We aren’t enamored any longer by the small things. We become occupied with our to do lists, the busyness of the day, and our phones . We forget to notice.
Just like, as a child learning to walk, they are aware that they are falling over and having to catch themselves with each step! (There’s my tie-in.)
Autism has been and remains an integral part of my life. I have an 8 year old son with autism who was diagnosed at 21 months and I myself was diagnosed years later with Asperger’s.
I have been watching Atypical and previously watched Parenthood which, obviously, both deal(t) with children on the autism spectrum. Parenthood was interesting since the character Max was not too far from Roger’s age. I recall one of the first episodes where Max would only wear his pirate costume to school. That, plus seeing his other quirks, I immediately knew the character would be diagnosed with autism. I have seen that rigidness in both Roger and myself. The show gave a perspective of autism that many other shows/movies lacked at that time. It was not a super power and it was not the all encompassing feature of the show. It was one dynamic of a family, just like it is in real life. Atypical which, clearly with that name, deals with a high schooler with autism. It shows his quirks and difficulties dealing with change. However, it also deals with normal teenage themes: dating, work, and college. It is almost a sneak peak of what may be to come.
Yes, my son has autism and I have Asperger’s but that only defines one part of our personalities and does not completely define us as individuals. It probably factored into some of our interests, our demeanor, our interactions, our relationships but it is not the be-all end-all. Day-to-day I tend to forget about Roger’s autism and may get a little impatient with the difficulty he has listening, focusing, following directions, helping around the house, finishing homework, getting dressed while spinning in circles, etc. I guess I need to slow down, maybe join in on the spin, and enjoy the dance together.
I will not declare that I will be posting daily into the future. I have made blanket statements before and as the words leave my lips the blogs stop getting written. However, today I am posting just to post. I have no topic in mind, but am keeping with the consistency that while I ride my bike I will write on my blog.
Now is the time I hope for some amazing, random thought to pop into my head. But, alas, my brain is empty and searching for interesting tidbits. A couple of friends and I went to a psychic fair together yesterday. One would think that could garner a full discussion. However, what I was told in my tarot reading was everything I currently know to be true. There were no insights, just validation.
Perhaps my validation is garnering new strength and confidence. Today, I reached out to my supervisors for projects. I usually review databases until they reach out to me for projects. I know I am organized, intelligent, altruistic, and, at times, witty. However, I do not lead life in a confident stride. I wallow behind in an uncertain gait. I am hoping hearing words of validation and speaking my own words of validation to myself will, perhaps, provide more strength, confidence, and new possibilities for myself and my family in the future.
I premised yesterday’s post by saying I have problems. Well, here is another one of my problems.
Over five years ago, I had a full hysterectomy where they take out both the uterus and the ovaries. Prior to having them out, I lost a significant amount of weight (25 pounds) and was very fit. A lot happened prior and we ended up in the DFW area 6 months later.
Moving is a big stressor and having a son with autism and trying to locate services in a region that is not helpful is even more stressful. In California, there were regional centers that got you in contact with specialists, set up and held copies of all evaluations, and helped pay when your insurance would no longer cover services. Due to those factors as well as moving from part-time to full-time work, trying to hire a sitter for post-PPCD hours and around therapy hours, and everything else in between, the past four years I gained *GULP* over 40 pounds!
Of course, I was no longer going daily to the gym or eating as healthy as I was in California and no longer lived in a walkable city. And, as in early years, therapy hours change, and you have to recreate your whole schedule at a drop of the hat. The past year things have settled down. I have lost 13.5 pounds ( the past four pounds due to surgery and not being able to swallow hardly anything weeks after). Now, I am stagnant.
I am logging calories and points. I am staying on the lower end and, once I was cleared, am adding exercise slowly. Well, the past 6 weeks, I have stayed the same weight. No fluctuations as people like to tell me happens daily. I started weighing myself more frequently instead of weekly and each time it is the same exact weight on the scale.
Yesterday, a woman linked an article about full hysterectomies and how weight gain is significantly higher than those who have a partial or go through menopause naturally. Today, I looked for articles about weight loss after a full hysterectomy. All stated that it was SIGNIFICANTLY harder to lose weight after a full hysterectomy and needed SIGNIFICANTLY more effort. Sounds lovely, eh?
I’ve always been a light sleeper which makes for a restless night when sleeping with someone else. And when I complain about Roger waking between 5 and 6 every day despite the time he goes to bed, my mother reminds me that I did the same. “If you were up until 2 am, you still were up by 6.”
Since pregnancy my sleep has worsened. I used to be a still sleeper – staying asleep on one side all night long. With pregnancy, I could never get comfortable and my husband’s coming into bed late (the night owl) would wake me too. Once Roger was born, he slept terribly as an infant. Through his toddler years he would only nap if in constant motion, which meant I had to walk him around in a baby carrier or stroller (if I sat or stopped walking he would immediately wake up) or drive him for an hour or so twice a day. During ages 2-4, Roger would wake up extremely early in intervals (a week period of 3 am wake ups) and return to the normal 5 am. And then, a month later, he’d do the 3 am wake ups again. It was cyclical. That did not mean he would go down for his one nap any earlier or, on good days, just skip that nap altogether. Lucky me, his naps ended at 3 years old, as well. On rare occasions, Roger will still have his extremely early morning wake ups and be up for the day.
I wanted to give you a background of my sleep before delving into this “post-surgery insomnia”. I realize that immediately following surgery, and the first couple of weeks after, sleep is going to be all messed up due to medications and pain. I think I actually slept better those first few weeks getting the most sleep I have had in years. However, the past two weeks or so I have had several days of early morning wake ups (being up for the day ranging from 1am to 4 am).
When I returned to work, the insomnia was not the worst thing since I could work instead of drowning in thoughts of “c’mon sleep” and trying techniques to fall back to sleep. This morning I awoke at 2 and tried my version of counting sheep. By 2:45 I decided, instead of lying there and doing nothing and being wide awake, I should just get up and start work and hope for a nap later. BUT before I did that I googled various searches for post-surgery insomnia. Most articles dealt with the immediate weeks following, but I found an orthopedic surgeon’s website that wrote about the matter: “Surprisingly, there are no published studies on the frequency of sleep disturbance several weeks or months following joint replacement surgery. However, in one study of patients with broken bones, 41% of patients with shoulder fractures and 36% of patients with knee fractures had difficulty sleeping 3 months after the injury. Even a year later, 20% of patients still reported insomnia.” I may not have had joint replacement, but I did have cervical disc replacement with a plate and screws.
My husband suggested I add more whimsy to my blog. With my lack of sleep, I respond, “Well, tough titties”.
Sometimes I get so busy or so involved with my son that I have to remind myself to actually take a breath. I will need to stop what I am doing and take a conscious breath. Do others actually need to do this as well? I’m not talking about a mindfulness or meditation deep breath, but a literal simple breath. It’s as if I have been holding my breath through the tasks and now need to breathe.
It has been happening more frequently. Since it is near the end of the school year, there is a lot on my mind, lots of schedules to coordinate. Add to that our upcoming vacation, my upcoming surgery and my mom’s chronic pain, I think my thinking makes me forget to breathe! It sounds so silly but by the time I take that breath, I really need it.
How many other things am I forgetting to do if I cannot remember to breathe?
Today I woke in much better spirits. I had steady stream of tasks this morning during work. That made the day move faster. Secondly, I had an appointment with my psychiatrist. I told her I had difficulty during the previous weekend as well as yesterday. Weekends are always difficult for me. I do better on the Monday – Friday schedule of life. Due to my depressive waves and anxiety, she increased my Lexapro and is adding Wellbutrin. She is hoping Wellbutrin will also help with my constant fatigue. Fingers crossed.
Previously I have written about how I was diagnosed with Double Crush Syndrome from the orthopedic surgeon who performed my ulnar nerve transposition surgery. For those not aware, it means my nerves are compressed in more than one place. I had severe compression on my left elbow but also have spinal cord compression which will be remedied (hopefully) with my ACDF surgery in July. One of the key components is the inability to tell from which compression the pain (or numbness/tingling/weakness/other issues) is stemming from in the body.
Today, I have been having a lot of pain in my left arm. I am thinking it is from my surgery. The surgeon said it takes about a year to heal from the surgery. I am 8/9 months post-op. The nerves regenerate and fire off signals. I am not sure if I have been leaning on the place my nerve was moved to in my sleeping and/or waking/working hours. All I know is this pain today is really annoying. I tried some Aleve but it’s not alleviating that pain or the headache I have had today. Unfortunately, with upcoming surgery and vacation, I have no additional time I can take off to rest. For these type of issues, sedentary work may actually be the most painful!
I feel cruddy and totally anti-social. I wish I could remain “hidden” all day. But, alas, my son’s school has an art show I assured him I would attend. Maybe it will lift my spirits. He always has a tendency to make me feel happy/silly, even if just for a fleeting moment. In the between time of work and art show, I am hoping to rest in bed by myself for a bit. I am sure co-sleeping may be another culprit in my painful day(s)!
Anyhow, as you can plainly see, today is also a major complaining day. Hopefully, tomorrow I will be in a less whiny place. And, perhaps, pigs will fly!
I have a little down time before we head to Roger’s afternoon activities. I had to sign onto my laptop to pay a bill and figure I should blog. I get reminders from Facebook that my Spinning Wheels page has not had a post in quite some time. However, what is there to write about when everything seems to be at the same place it was the last time you wrote?
I am still trying to get everything in order for our trip to Denver and my surgery. I am still trying to not fall down the depression/anxiety hole by meeting with my psychiatrist every couple of weeks. I am still trying to make it through work and life everyday and be somewhat positive. I am still letting little things interfere with my mood and perseverate about them. I am still watching documentaries on Netflix (after finishing Love). I am still functioning better during the week since life has less routine on the weekends. That makes me concerned with summer that begins in 3 short weeks!
Now it’s your choice: to read or not to read…
Every day, lately, has felt like “hump” day. Every day I start with my usual tasks and by about 9:30 am usually exhausted and ready for the end of the day. Today, at Texas’ version of the DMV, I was waiting at the window not a particularly long time and just felt my overwhelming exhaustion. I felt like placing my head on the ledge and closing my eyes. Multiple times, lately, I have had to put my head down on my desk for a few minutes to make it through each work day. I am even putting my head down on the kitchen table, sometimes the kitchen counter, sometimes on the crossed arms on my lap.
Besides the exhaustion, I have been much more aware of my arm and leg pain. It’s become a nuisance. It’s not interfering much with my daily routine, but just a reminder. I told Rob that over the next ten weeks I was going to cut back on chores/tasks that seem to increase pain. I want to be well enough for vacation and to enjoy my pre-op summer time with Rob and Roger.
I am still very low energy and short on patience. However, I figured I should write a short post now that I am done with the day’s work and Rob is out with Roger.
Recently, I pulled out a puzzle Roger won and decided to build it by myself, since no one else was interested. What I did not expect is that Rob would be sucked in to the puzzle building as well. We are currently on our third puzzle. Rob calls it a time suck, but I find it enjoyable (albeit sometimes frustrating!).
My next new “hobby” is a bit macabre. While watching the show, “It Was Him” on the Paramount Network, I realized how much I enjoy true crime shows, movies, and documentaries. I always watch Law and Order: SVU but always find documentaries more fascinating. On Audible I downloaded and listened to Inside the Mind of BTK. It was interesting but the narrator was horrible and horribly mispronounced so many common words and names. I just started listening to Killer Clown (about John Wayne Gacy). So far I can tell you the narrator is much more knowledgeable about speaking correctly and has a “detective-like” voice. I am liking this one much more. I have also downloaded fiction crime stories as well.
It is nice having these distractions lately!
The past two weeks have been a trying time for me. I went to a new psychiatrist and started a new medicine. It worked well and I had a follow-up appointment two week’s later. Since all was good with my mood (but still having some OCD and anxiety) we decided to not increase medication dosage and “wait and see” for two more weeks.
I was in much better spirits, actually enjoying myself, not feeling as angry and not lashing out as easily. My motivation was coming back and I wanted to focus on eating healthier, exercising more, adding in meditation, and doing a really good housecleaning.
Although my exercise was only about 20 minutes a day, that (with the repetitive motions of cleaning), irritated my cervical spine issues. That’s putting it nicely – the cleaning and exercising caused significant pain. I had to sleep with a travel pillow. By Friday, my back was in such bad shape that I could hardly move. To say it put me in an awful mood, again, is putting it nicely. I have been severely depressed since the pain began. Will I be able to function normally post-surgery? Dusting the house exacerbates my issues, I recall from an earlier cleaning attempt. Taking a scenic walk in our area caused my upper back to be in such severe pain, I had to take my muscle relaxers along with the icing and heating.
This weekend I have been in bad spirits. I feel like I’m back in that place I was prior to seeing the psychiatrist. I just want to be in bed. I feel anti-social, unhappy, in pain, exhausted, easily irritated and overly anxious.
Will I survive a summer vacation to Colorado? Roger is way too excited to cancel it. Am I putting off surgery too long? Will I be able to handle Roger’s birthday party post-surgery? Will I gain another 30 pounds being unable to do simple tasks around the house? I keep going on and on and getting lost in my own thoughts. I am hoping typing this out will get these thoughts “out there” and I will stop perseverating.
Is 6:30 too early for bed?!
Amidst all my praise for all the progress Roger has made, there is one area in which he has not improved. It’s his feet. When he was little, Roger never wanted to be barefoot. Then, there were a couple of years that Roger would only wear rain boots. It was when he was 3-5 years old. Any other shoes would cause him to meltdown.
Sneakers have been really tricky. We used to be able to do Velcro sneakers. But, alas, the Velcro starts to be less effective/less sticky and Roger would meltdown trying to reattach the Velcro over and over again. We decided, since the Velcro were never tight enough, to do lace up sneakers. He has been using lace up sneakers since he’s been in baseball. That was how we got him out of rain boots for one day a week — he had to wear sneakers if he wanted to play baseball. Thankfully, he eventually gave up the rain boots and will wear either sneakers (for school and baseball) or flip-flops.
Every morning has gotten increasingly worse since spring break. It used to be tying his shoes 2, maybe three times, for him to be okay with them, for the shoes to be tight enough for him. This morning I tied his shoes five or six times before we left for school. He was in tears, screaming and hitting his head. They still did not feel right to him. I told him we had to leave or he’d be late. Once we got to his school, he asked me to tie them one last time. I did.
It’s so heartbreaking to see my son react like that. When he was younger, he had many more meltdowns and would hit his head. He outgrew/out-therapied the majority of that. It’s just the damn shoe issue that keeps rearing it’s ugly head. It will subside for a bit and then get ridiculous, and then subside, and then get out of hand again. I am wondering if it is linked to anxiety. Obviously there is a sensory component but for it to flare up, I think there is something else going on: anxiety, OCD, control issues. These are the only times he gets violent — recently with hitting himself in the head and in the past (January 2018) with him hitting his head into my back.
Tomorrow he has baseball and I know the shoe tying will be a nightmare in the morning. He’s also informed me that he is getting a small hole in the toe of his shoe and that he wants to buy new sneakers tomorrow. Oh boy, sneaker shopping with Roger is a whole other story!
I look forward to Sunday when he can wear his flip-flops.
April is an interesting month. It is Autism Awareness month which really makes me reflect on Roger’s progress, how proud I am of him, and how thankful of the opportunities we have had in the past 7 years. As Dr. Wooten proclaimed, my clinically diagnosed OCD is really helpful for my researching the best therapies for Roger, school districts, activities, and insurance policies.
Roger’s annual ARD is in April, which is really apropos. His goals went from many to few. He is hitting most of his grade level work and exceeding it in DRA (reading levels) and Istation. Due to hyperflexion of his thumb, he will remain in school OT for once a week and eventually be moved to once every other week. We are lucky, since OT is usually the first in-school therapy that is dismissed. He will remain in speech twice a week mainly due to his lisp. He will get 30 minutes of handwriting help and 60 minutes of reading comprehension help per week with the special education teacher.
Outside of school therapies, Roger’s private therapies have dwindled to only occupational therapy once a week. He could use food therapy, since his food is still so limited, but he really does not want to go back to food therapy. Up until this year, Roger had private therapies 4 days a week. I really do not wish to add back therapy at this point and really think Roger has worked hard enough (and still is working harder than most kids). Academically, I found a tutor for Roger in reading comprehension that he sees once a week at the library. At this point, he really enjoys the tutoring, especially since he gets to raid the juvenile biography section of the library afterwards!
Besides therapy, Roger is in a few extra-curricular activities. He has swim lessons (he has advanced from Level 3 where he would not put his head under water up to Level 7 in less than a year), goes to School of Rock, and is in special needs baseball.
It is amazing to see Roger bloom and have such strong interests is music, scientists/inventors, and death. Yes, my son is obsessed with when people died. He watches YouTube videos on famous people who have died and asks all about them. He is full of facts about history. He is so talkative and loving. Who could’ve know that my son who had so few words and hated to be touched would grow into such a person?
Simply, my son is extraordinary!
To see tidbits about how Roger was when little, I started this blog when his therapies began. Start with the oldest blog and work your way through (if you want — I know I may do so just as a reminder).
This week has been mentally exhausting for me. I had my second neurosurgeon opinion on Tuesday (3rd opinion overall, including last year’s orthopedic surgeon opinion). All surgeons agree that I should have surgery. Two told me the time frame was up to me while one told me I needed to have it in 2-3 weeks (all were looking at the same MRIs, x-rays, reports). I had read that for cervical surgery one should have a neurosurgeon instead of an orthopedic surgeon. That narrowed my decision to two.
After consulting with my husband, asking on a few ACDF Facebook groups, texting/messaging nurse friends, and writing a pro & con list, I made my decision by Wednesday morning. It was an incredibly difficult decision filled with much anxiety and sleeplessness. I didn’t have a “gut feeling” about one doctor as I had with the ulnar nerve surgery. Each surgeon had polar post-surgery protocols. That made my decision much more confusing. I was not only choosing a surgeon but choosing which recovery I thought would be best for me. One said I would be in a collar for 3 months 24/7, the other said I would be in a collar for two weeks when I was up and about (not while sleeping/sitting). Thankfully I am OCD, so researching is second nature!
This week I also began seeing a new psychologist. I am trying “telehealth” which is basically skyping with a therapist. My new insurance uses Amwell, so I thought that with my time constraints it would be an easy solution. It was the perfect timing with surgery happening in less than four months from now.
The psychologist was a good fit. She understood having a special needs kid, my stress level and, overall, current situation. I feel like it was almost kismet that I made the decision on which therapist to use. The past few weeks it has been suggested to me (by independent sources) that I should use Mindfulness-Based Stress Reduction. The psychologist also made this referral. She told me a couple of websites to consult, one being a link to a free MBSR online course. I read the Introduction/Getting Started sections and will, formally, take the plunge this upcoming week. It is an eight week course which requires 30 minutes of practice time per day. That will be difficult but I really want to make this commitment to myself. (If anyone is interested, the website is palousemindfulness.com)
Today has been a slow and steady type of day. I had a nice workflow going, had my “maintenance” allergy shots (which are itching up a storm still), did a teeny bit of straightening around the house, walked with Roger to and from school, and am now stationary bike riding and typing.
The wind picked up on the way home from Roger’s school and I question whether these allergy shots do a damn thing. I still take a Zyrtec and one Benadryl each night and sometimes an allergy pill during the day. I still get congested and sneeze quite a bit — which Rob is concerned with re: cervical fusion/ACDF surgery. And, I still get numerous sinus infections, which the allergist touts does not occur once you get allergy shots. I think it’s been 3 years since I’ve been getting them and the only reason I am not stopping is fear that it may be worse without them. Then I’d have to start from the beginning again and build up my tolerance.
My mother had her follow-up with the orthopedic surgeon regarding her broken pelvis. The bones are healing nicely, but she is in the worst pain of her life. When the doctor did her exam, it was obvious that her intense pain is stemming from her back. She is trying to get a spinal cord stimulator implant to relieve her chronic back pain. She is getting in-home OT and PT. She is such a strong woman! My father has been ceaselessly taking care of her. He is really remarkable, though exhausted, at nearly age 82. We try and go over to visit and when my father needs time away. However, it is hard with our daily work/Roger schedule!
Roger is doing well though he’s starting to complain about being tired much more often. I am thinking he may be affected by seasonal allergies or still adjusting to the time change. He has asked to stop taking Hip Hop Boys. He is still in swimming lessons, School of Rock, Miracle League baseball, and occupational therapy. Maybe that is why he is exhausted!
Robert quit his office job about a month ago and is now working from home as a full-time, independent artist. He has been building up his Instagram followers to over 82,000 and been doing some vendor shows. Next month, we got a booth in the artist’s row at a convention in Dallas. He is making a steady income and much happier. We still have to adjust to having only one car though — I think that may be the hardest adjustment in the weeks to come.
That’s a wrap!
Today I have the best of intentions to clean the remainder of the house while my son is out with daddy this late afternoon. In anticipation, I have been doing a little bit of dusting here and there. Oh my, my back/neck/arms hurt! I am doing NOTHING intense, just walking and mildly dusting.
My thoughts as I continued to dust: do I even need another neurosurgeon appointment?! (I do just in regards for timeframe surgery may be necessary). A few days ago I read through blog posts from July describing my neck/arm/head pain and remembered how physical therapy made it more unbearable. I guess the months that the pain diminishes or lessens in degree, I forget about the painful months. I don’t have many readers to my blog but this journal really helps me in keeping a log of pain (physical and emotional).
Last night, I looked over at my son beside me in bed. It caused he most excruciating pain. I must turn my body when I am upright and looking side to side. It brought tears to my eyes realizing surgery may be closer than I hoped.
Despite my sleep deprivation, we had a fabulous Sunday at Fort Worth Zoo. The weather was perfect and the animals were mainly awake and visible. The last time we went to this zoo, Roger was three years old and not at all interested in the animals. His autism made him only interested in fans, the train, and other inanimate objects. This time he had more interest in the animals but really was interested in the dates on plaques. His brain must be filled with pages of dates. According to him, he takes pictures in his mind that he pulls up when he talks about specific people in history. He will be looking at a book and if he needs to put it down to go to a class or therapy, he says he has to first take pictures with his mind. It is so interesting to hear him vocalize how his mind works.
Yesterday and today were days to get back into the regular routine of school and work. I am adjusting better to life in my upstairs office, although I still have hiccups that require almost daily calls with IT. I am still trying to figure out the balance of housework, Roger’s therapies/classes, trying to exercise, and my job. I have decided to let some things I wanted to be weekly to go on a bi-weekly schedule. I think that may help out my stress level. I have also asked Rob to take over Roger’s after school schedule every other Wednesday so I can deep clean the kitchen and bathroom. It may not be exciting to you, but it’s been plaguing my mind.
I wish my mind was filled with pictures that I pull up, rather than lists of scheduled activities!
Let me catch you up: Thursday and Friday nights I had terrible allergy attacks at night and, therefore, slept terribly. Yesterday, we still ventured to the St. Paddy’s Day festival in Lewisville but I was in a foul mood. Some of Roger’s behaviors that I may have overlooked on more rested days, I got quite upset about yesterday. So, last night I decided to take Zyrtec-D since it is always a go-to when my sinuses get really bad. However, it’s been a few months and I forgot that horrible side effect it has on me.
I fell asleep around 11 and woke up wide awake at 12:25. I tried for over 3 hours to fall back asleep, even taking melatonin. My last attempt at sleep was counting backwards from 1,000 (which is in a sleep meditation I sometimes listen to). When I could easily count backwards and not get tired, actually be more awake, I realized it was time to get up.
I got up and started working at 3:45 am. I usually only have an hour – 90 minutes of work to do on Sundays. I was worried Roger would wake up and not fall back asleep, but I could not be a prisoner to the bed anymore. Of course, Roger woke a few minutes past 4 calling for me. I told him to either lay in bed and I’d put on the light or lay on the couch outside of the office. He chose the latter but never fell back asleep.
We came downstairs after I was done with work at 5 am. I cleaned up the kitchen some, got the animals’ water dishes refilled, filled up the dishwasher, and sat with Roger while I drank two cups of coffee. Then I started a wash and decided to start riding my bike and blog.
We still plan on going to the Fort Worth Zoo today. I actually think my exhaustion will hit later today or, most likely, in time for work on Monday morning!