Ant Bites!

Let me premise this by saying I have problems.

Thursday night, we went to the library for my son to meet his Reading Comprehension tutor.  I was discussing a test he had the previous week and then, OW!.  I walk a little further with her and feel an ouchie on my toe.  I see this black ant and I try to fling him off casually as we are walking and talking.  Eventually, Roger goes into a study room with her and I investigate my foot.  Two bites.  I didn’t know blank ants bit like this.  Rob appears about 10 minutes later and my foot is incredibly itchy.  Then I feel something on my other foot — another black ant (or the one I tried getting off my right foot).  By now, I feel itchy head to toe and feel like I am covered in ants.  I hate that feeling.  I could not wait to go home and take a bath.  After my bath, I put cortisone cream on my right foot and, once it penetrated, I put socks on.  My itchiness would not subside, so I took Benadyrl before bed.  The cortisone cream was doing NOTHING.

The next day I awoke with itchy foot and exhausted body.  By noon I had drank 4 cups of coffee and was still exhausted.  Then, I noticed my throat/windpipe seemed like it was narrowing and my voice became very hoarse.  I decided to call my insurance company’s nurse line to see if I should go to the doctor. After extensive questioning and my history of allergies and having experienced anaphylaxis previously, she said I had to go to the doctor.  Of course, both my physician’s office and allergist’s office close at 1 pm on Friday.  I had to go to RapidMed.  Thankfully, the wait was not too long.  I ended getting two steroid shots (one in each hip) and prescriptions for 1. more steroids 2. antihistamines 3. a pill for allergic reaction.  I had a 4th prescription for epipens but they are backordered at all Walgreens.  They have not had them for months.

Before bed I took my prescription antihistamine that did absolutely nothing for the itchiness, I applied more cortisone cream and was incredibly itchy for hours.  Finally, I fell asleep and woke up groggy and with the same itchiness.

Today, I started my steroid pack and took the pill for allergic reaction.  I am not sure which one is helping but the itchiness has subsided a bit.

Oh, and one last thing, on my internet searches, I found out that there are Black Fire Ants and their bites are just like the Red Fire Ants.

Loyalty

I do not have that much to write about today.  I, thankfully, slept 6.5 hours.  I worked.  I had coffee with “the girls”, as my husband puts it.  I picked Roger up from school and took him Pokémon hunting in the park.  I tested Roger’s spelling words for tomorrow’s test.  I made his lunch and breakfast for tomorrow.  I folded laundry and am now riding the stationary bike before taking him to his Reading Comprehension tutor.

The highlight of the day was receiving a set of easy stretches/joint exercises from my friend who recently became a yoga teacher.  The lowlight of the day is reading about a restaurant moving two doors down from an exact same type of restaurant that has existed in a now growing but previously stagnant shopping center.  Everyone is so excited and I got so riled up.  Why would they allow a pizzeria/Italian restaurant two doors down from a place that has been in that plaza for years?  Had anyone heard of loyalty?  A friend said it was because “because people only care about money and as a democrat that greed infuriates us”.  This restaurant that is moving in will, most definitely, ruin the other family-owned business.  How terrible!

Now, I feel like I need to order a pie everyday to show my support.  Would that be considered a highlight or lowlight?

Surgery Insomnia

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”.

Surgery Files: My recovery at home

I was discharged on July 15th after two nights in the hospital.  (That tells you what a big surgery it is since they love to release you right after the recovery room!)  I remember very little of that day except that I stayed in bed the first 24 hours at home, in the dark, without the tv on, or reading books, or looking at my phone.  I could not handle any light.  When I wasn’t sleeping, I was crying over my horrible decision to have had this surgery.  For me the worst part was my throat – I could not swallow ANYTHING.  Everything hurt so much.  I had anxiety over taking medicine and staying hydrated. Drinking water hurt so terribly and I choked continually trying to eat or drink anything.  I started taking pills with applesauce which seemed to be the only substance I could “easily” intake.

On July 16th, I made it downstairs and took my first post-operative shower on my shower chair.  The whole ordeal exhausted me and put me in an utterly foul mood.  I was not very optimistic at this point.  Thankfully, Rob called my neurosurgeon’s office regarding my choking.  They prescribed prednisone and by the end of that pack, I was doing much better.  I was still choking on water but to a lesser degree.

By July 18th, I was turning a corner and not just sitting/lying in bed or sitting in the recliner.  I started walking around the house more.  On the 19th, I took my second shower and it, again, exhausted me.  I think I was overdoing the walking and started feeling not-so-great again on the 20th.

The days and weeks since surgery have had many ups and downs.  Today I am feeling pretty good, but yesterday was a really terrible day where I did not/could not leave the house.  I had to use the shower chair to get dressed after my bath.

Here’s hoping for continued good days and fewer of those bad days!

 

Surgery Files: Remainder of Hospital Stay

The remainder of my hospital stay is pretty fuzzy.  This post will be less story-like and, instead, be a list of what I can recall (since it will not form a complete story).

  • The inability to swallow anything without choking — I was put on a liquid diet.  Things like applesauce I could swallow best.  Drinking items like water were the hardest to get down without constant choking (even on one little sip).
  • Being taught to use the mechanism that tests lung capacity (googled it and found the name to be Spiro-Ball) and my lung capacity was awful.
  • Rob staying the first night in the hospital with me (I remember he did but cannot remember that night at all)
  • Realizing, after being constantly itchy, that I am allergic to morphine (instead of giving me an alternative medicine, they just gave me Benadryl and continued with the morphine drip)
  • Being told I needed to walk more but really doing the bare minimum
  • Not really being taught how to put my brace on and adjust it correctly (or at all for that matter)
  • Switching rooms and trying to reach my parents before their visit.  This ended up in my parents first going to the first room and then having to walk to the opposite side of the floor and my mom falling.
  • My mom refusing to immediately get an x-ray (which the staff probably would have gotten her into ASAP) and instead, after an hour or two, going to ER and being there til 1 in the morning.
  • The nighttime staff being non-attentive the second night when I needed to make my several trips to the bathroom
  • Still being allergic to morphine (so not using it as often as I needed) and given Benadryl.  FINALLLY, before being discharged after the second night in the hospital, they took off the morphine drip and gave me pills: Tylenol 3 and muscle relaxers.  Trying to swallow pills with water was a nightmare.
  • Telling the nurse how I was given the instructions to only take one Tylenol 3 every 8 hours and up to 3 times a day for the muscle relaxer after she told me to repeat the meds in 4 hours.  She could not believe that infrequency.

I do not remember the drive home (although I do remember waiting with the nurse for Rob to drive up).  I do not remember walking upstairs and lying down for the first time.  It is probably best not to remember those things too clearly for I am sure they hurt like hell.

Tomorrow I will try to post about my first week at home (or at least the first full day).

Surgery Files: Day of Surgery

I am going to explain what I remember about my surgery and recovery.  There are definitely really foggy areas, but bear with me.

We arrived at the hospital at 5:30/6 am on Friday, July 13th.  The check-in was the normal process but instead of heading to the back where I have gone through some out-patient procedures, they brought us to the second floor.  I knew I would be spending a minimum of one night for this ACDF procedure (anterior cervical disc fusion) on two levels: C5-C6 and C6-C7.  In layman’s terms, they are taking out those two discs, replacing them, spacing them out as they should be (instead of rubbing on each other and the spinal cord) by putting a plate and screws.  In the process, they move your esophagus and vocal cords to the side.

The enjoyment of the surgery day began with the first nurse trying to put the IV in my right hand.  Once in, she said she lost the vein and was digging inside my hand with that large IV.  I could not hold back tears – so friggin’ painful.  The second nurse comes in and tries to put an IV on the side of my left hand/wrist area.  She sprays something to numb the area and, again, misses.  A third nurse, who looked utterly pissed off because she is probably always called in to do things correctly, quickly inserted the IV into the top of my left hand.  However, by the time the surgeon came in, I was still in tears over the first IV attempt still hurting. The normal paperwork was signed and questions asked and I was rolled back closer to 7:30 than 7 am .

I awoke in the recovery room unable to breathe.  That I do remember.  I was crying trying to breathe.  Rob relayed that rather than the 45 minutes we were told I would be back in recovery, I was there for roughly two hours.  He was not informed of what was occurring but just told the surgery went well and no drain was needed.  At some point, I passed out again and woke in my room.  I saw Rob quickly and, again, upon waking, I could not breathe.  They rushed Rob from the room, took an in-bed X-ray and wheeled me down to get an emergency CT scan.  Thankfully both came back “normal”.  I had to keep oxygen on at all times.  At that point I had not been able to drink anything but given grotesque swabs for my mouth.

Other things I recall from that day:  Carolyn bringing Roger with Get Well balloons to see me (she was so sweet to watch him while I was having surgery).  Rob being utterly sweet and kissing me in the bed.  My parents visit is utterly blurry.  The itchiness of the oxygen up my nose was horrible.  My inability to swallow without choking was horrendous and lasted about a week.  They told me they were putting steroids in my IV.  The nurses wanting me to get up and walk around after the breathing ordeals (yeah, no – to the bathroom and back was fine – and there were many walks to there since I pee a lot).  I remember trying to push the morphine button as often as possible while conscious.  That is about all I remember.

Tomorrow I hope to blog about the rest of my hospital stay.   Thanks for reading!

The Swing of Things

Right before the 3 day weekend, I start getting back into the swing of things.  Last night I was in SO MUCH PAIN.  I really could not believe that a simple desk job could affect my pain level so much.  Also, when I went to bed last night I was utterly freezing.  I turned the air off and asked Rob to get me an extra cover.  I will still freezing.  However, I woke up this morning feeling great.

The waves of pain/stiffness are coming more frequently today, so I have been getting up and walking much more than yesterday.  My job understands that I need to do this.  Yesterday, though, I was pretty glued to my seat pouring through emails.  Yes, people covered some of my work, but some items fell between the cracks which meant reviewing every bit of work.  Today my work pile is still large but manageable.

I am currently on my lunch break and using the stationary bike.  Luckily, the wordpress site is working and I no longer have to type a post out on my phone!  I vow to keep up the bike riding which means I shall keep up the blog!  Slowly, I plan on integrating yoga.  I found a video on youtube for yoga after back/fusion surgery and avoiding certain movements for your spine (cervical included).  I will try that first before attending a class.  BUT my motivation to do that is somewhat lacking.  BUT I should be proud of my ability to stick to one exercise since I have not been consistent since I don’t even know when!  Baby steps… or maybe I shall make a lame joke and say baby pedals!

First Day Back

Today is my first day back at work. How did my body reward me? By waking me up at 1:15ish and with the inability to fall back asleep.

I began my work day at 2 and worked til Roger woke up at 6 am. I pretty much was able to work 4 hours straight with little breaks to walk and stretch on the floor.

I have been on “break” since 6, making Roger’s breakfast, getting him ready for school, and walking him to school. I am now on my stationary bike with the intent of blogging. However, the damn WordPress site on my computer is not working. I can see my page but cannot log-in, go on my dashboard, make posts, etc. Alas, I have to type this thing out on my phone — not fun.

Well, thr one plus to my early hours is that I only have a couple hours left and then I can nap. Hopefully my body will obey!

Surgical sabbatical

Tomorrow I return to work.  My last day of work was July 12th.  I had grand ideas of blogging about my recovery from ACDF surgery.  Then, once the surgery was over, the brutal reality of how difficult of a recovery it was going to be sank in.  I may still blog about it one day in the near future.  However, today, I just wanted to dip my toe into the wordpress waters, scream a jaunty HELLO, and tell you that I will be, hopefully, updating more regularly in the future.  Thank you all for your love and support!

Tomorrow is the day

Since being back from vacation, my thoughts have been occupied by my upcoming ACDF surgery (anterior cervical disc fusion). This week, by far, was the most stressful. My urinalysis showed moderate blood and had to be sent to another lab for further testing. I also had to wait extra time for my C-reactive protein results. I got the phone call today at 10:30 am saying that all is good and the results would be sent to the neurosurgeon’s office. Mind you, this was only 19 hours before my arrival time at the hospital.

Every moment of today I feel like I am going to have a full-on panic attack. Currently, it is 14.25 hours until my arrival time. I have been told that if I feel this anxious at the hospital they may give me something to calm me down. I hope so!

To quickly describe my surgery: an incision will be done through the front of my neck, my vocal chords and esophagus will be pushed aside, the bad discs removed and donor bone inserted, finished with a plate and screws. I am having two-levels done: C5-C6 and C6-C7. I will be in a neck brace until my post-op appointment on August 1st. I’m lucky because some surgeons require a brace for 3 months.

My plan is to give updates on my blog. However, medication and pain may halt that for a bit.

Positivity shall rule the day! Send good vibes my way!

Breathe

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?

New Rx

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.

Double-crushed

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!

To write or not to write…

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…

Hump Day

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.

New Hobbies

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!

Up and So Far Down

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?!

 

The Shoes

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

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).
https://wordpress.com/post/leahbisrael.com/9
https://wordpress.com/post/leahbisrael.com/11

 

 

One week later

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)

 

Quick updates

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!

 

 

What a Pain!

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.

The Mind

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!

Sleep-deprived Sunday

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!

End of week

It is the Friday of spring break.  Unfortunately, it was not quite a break for us.  My husband and I had work and my son was in camp all week.  Luckily, he was so excited for camp each day and said he had a best friend at camp.  Last night, we went to Main Event and played video games and Roger got to play laser tag with a friend from his school.  Today, after camp, my husband is taking him to the park and then we will all go to my parent’s place for dinner (bringing over Chinese food).  Roger is probably a bit disappointed I did not go to the park, but I woke up with horrible allergies.  It’s that time of year when I start having days that feel flu-like but know it is just what happens when the weather is nice.  I get to only explore the great outdoors on hundred degree days that are allergy-free.  This is truly not fair!

I have decided to have another appointment with the neurosurgeon I met with last year prior to my ulnar nerve surgery (who recommended traction).  I have an appointment with him two days before my follow-up with the new neurosurgeon.  As you can see, I am really wanting avoid surgery!

I have not received a call from the imaging place yet re: x-rays.  I called them yesterday and they did not get the order yet.  They said they will call me.  So, this afternoon I emailed the neurosurgeon office via the patient portal and will follow up with both over the phone on Monday early afternoon, if I hear nothing.

Now that a couple of days have passed, I feel like the idea of surgery is a long-past memory.  I am cheerful, despite allergies.  I am loving my new office arrangement and ordered a new, larger turquoise rug (to compliment the orange walls), so I can stretch during breaks.

Tomorrow hopefully my allergies can subside so we can enjoy a day outside in the gorgeous weather.  There is a St. Paddy’s Day Texas Style festival in Lewisville I would like to check out.  I have also heard the Dallas Arboretum is beautiful.  Hope you all have a fabulous weekend!

Neurosurgeon

First off, let me say that I have been dealing with this back pain for over a decade.  I was working in NYC when I started treatment on my back.  I have been in and out of physical therapy, had a few epidurals, and many x-rays and MRIs over the years.  The pain in my back specifically and has been pretty constant since 2014 and my limited range of motion since 2007.

Since being in TX, I was referred to one orthopedic doctor who said I had three options:  1. Physical Therapy 2. Epidurals 3.  Surgery.  He said it was up to me.  I went the PT route and never returned to him, since he offered no advice.  Then, I went to a different orthopedic surgeon who set me up with a pain doctor for epidurals, since PT was not helpful.  Last year this orthopedic surgeon said I needed ACDF surgery.  I was hesitant because he suggested the same to a friend who was told her disc issues were very minor by another doctor.  So, I met with a different neurosurgeon at the time that recommended traction over surgery, since, at the time, my arm and hand pain were the biggest issues.  Also, my PCP at that time suggested I get an EMG to see if my arm pain stemmed elsewhere before committing to ACDF surgery.  That is when it was discovered that I had severe compression of my ulnar nerve at my elbow.  I had ulnar nerve transposition surgery last August and “forgot” about my back.

Currently, the past couple of months, arm pain has returned, along with the ever-present neck pain, headaches, shoulder pain and mid-back pain (all due to my C5-C7 discs).  I went back to the surgeon who performed my arm surgery.  She said that what I described was most likely due to the my neck issues.  I went back to the pain doctor, set up two epidurals and a referral to a neurosurgeon who she highly recommended and was conservative in his approach.

The new neurosurgeon was very straight forward.  He said, at this point, physical therapy or epidurals will not help.  They may help some of the symptoms but will not make the underlying issue better.  He tested my reflexes and did some sort of flicker test on my fingers. My middle finger on my left hand twitched.  He said this was definitely indicated that surgery is necessary. He recommends ACDF surgery on 2 levels (as the orthopedic doctor suggested).  He said the level above is having some slippage but, since he is conservative, would not work on that level unless the new x-rays he ordered show more slippage from the x-rays of 2015.  He said surgery was not urgent but needed to be done.  Our perception (my husband and I) thought that meant that we would discuss in a year, maybe five.  Thankfully my husband asked for a specific time frame.  The neurosurgeon said 2-3 weeks.  Um, we would define that as an “urgent” time frame.  He retorted that in the medical field “urgent” meant surgery needed to be done within a 48 hour time frame.

I have a follow-up appointment in two weeks where the new x-rays will be discussed, as well as the plan for surgery.  I did tell him I could not have surgery so quickly.  I have a colonoscopy in May and we have been planning  a very nice summer vacation for the end of June.  I will be in a neck brace for 3 months post-surgery. I cannot drive in a neck brace and we are driving to Denver.  He did not like me waiting so long — but I’ve been waiting for a year with all the last minute attempts at another round of physical therapy, epidurals, and ulnar nerve transposition surgery.  He said to avoid anything jarring: running, jarring exercises, riding a horse, being on a boat, and not to fall when on the mountains!

I guess I need to get back in touch with HR tomorrow and find out what short-term disability I can get since I had surgery not so long ago…What a fun Wednesday!

Tuesday, Tuesday

Well, today started out very stressful.  I had a half dozen phone calls with my boss prior to 9:30 am.  I was in a constant stream of work until noon.  I got up at 10 to the hour each hour when my Fitbit told me I took zero of my 250 steps each hour.  After my lunch break, things settled down to a more manageable pace until the end of the work day.  Today, Rob picked Roger up from camp and I got to take a long, extremely hot shower.  I love showers that my skin is pink/red for a good 20 minutes afterwards.

Today we met a reading comprehension tutor at the Lewisville Library.  It is hard to discuss the needs of tutoring when your son is at grade level.  However, as many kids in his class started the year at lower levels than him, they have progressed to his level 6 months later.  Roger is still at the same level he started the school year at.  He is a great reader but I think his downfall may not be comprehension but attention.  His long-term sub thinks it is lack of interest v. comprehension.  How can you teach a kid to be interested, pay attention and focus on books that have zero interest to him?  The only books he is interested in are biographies.

Of course, he aced the tutoring session and she said she would reach out to interventionists in elementary school for suggestions.  She is a dyslexic interventionist in middle school.  She gave me pointers but I told her that he will do these things for me.  He is a people-pleaser for everyone except me and my husband.  At home he fights about doing any homework.  I could never homeschool.  This child would be determined not to learn anything from me.

After his session, we went to the biography section of the children’s library and Roger chose books on Michael Jackson, Bruno Mars, Prince, Louis Armstrong, John Cena, The Rock, and Chuck Close.  The Chuck Close book was one I showed him — truly an amazing artist and a fantastic children’s book.   We also got Roger his own library card and he checked out his own books.  He was thrilled.

Afterwards we had a nice dinner at Red Robin.  That restaurant is never my choice but I know Roger really loves it and he’s been such an awesome boy lately.  I had a nice libation there and two godiva chocolates at home.  That made my mood better.  However, I do not want alcohol or food to be my stress reliever…Although relaxed, I decided to jump on the stationary bike and blog while riding.  Not as yummy, but enjoyable too!

Big Ball of Stress

Achieving balance is what most people are striving for  – or at least I am.  However, at this time in my life, I view everything as stressful.  Work is stressful, cleaning is stressful, trying to find time to exercise is stressful, eating healthy is stressful, getting Roger ready for school/camp/bed/classes/therapy is stressful, playing with Roger is stressful, trying to fall asleep at night is stressful.  BUT doing nothing is the most stressful of all for I think of everything I should be doing.

I think I have forgotten how to relax.  What is the first step?  How do you train yourself to relax?  It really pisses me off when I see others relaxing while I am stressing out.

I also think I have forgotten how to have fun.  It takes a lot to make me smile or genuinely enjoy myself.  It wasn’t until The Dead Milkmen were actually onstage playing that I enjoyed that night.

I genuinely feel bad for my son and my husband.  I want to have fun.  I want to let go.  Will a brain swap work?

Any tips or advice appreciated (just comment).

Post-anesthesia Blues

This week has been mentally, physically, and, mainly, emotionally hard.

Prior to my epidural, I had a change in my workspace.  Instead of working on my personal laptop, that I could move from an exercise work station to different areas of the house, I am now confined to an upstairs workstation.  The set up is quite impressive with large dual-monitors provided from my job.  I am thankful but this has been a learning curve for me.  I had to learn some new programs, spent the majority of Tuesday on the phone with the help desk, and am still not equipped with everything needed.

Wednesday was my “oh-not-so-fun” epidural experience that you can read about in an earlier blog.  They days following have been tough work days.  I was physically exhausted but thought I did not need to take off extra time.  Boy, was I wrong.  I lumbered through them physically but was hit mostly emotionally.

Since Wednesday’s epidural reprimand, I have been in and out of streams of tears.  I have not cried this much in so long.  I have read theories over why anesthesia could make someone cry.  I am wondering if the stress of the past year is finally releasing itself with the help of the anesthesia.  If so, when will the tears finally end?