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!