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?

 

 

 

 

 

 

 

 

 

 

 

Yesterday’s Epidural

Yesterday I had my third cervical epidural.  My two previous ones were done a couple of years ago.  I had some nerve issues after my second one but did not have any issues with the actual procedure.  That was not the case yesterday.

First off, we had to be at the hospital at 6 a.m.  So, we woke up about 1.5 hours earlier than normal.  That wouldn’t have been a big deal, but I could not sleep at all due to the fact I was worried my alarm would not wake me.  I was up every few minutes looking at the clock.  Therefore, when it was time to wake up, I was already awake and exhausted.  My husband had to get my son ready for school so he had to leave me at the hospital.  I was glad they were gone before I got my IV.  Normally, I get my IV in my hand.  However, this time the nurse put it on the side of my hand/wrist.  The only other time I had it there was when I had surgery on my ankle (almost 20 years ago) and it hurt so bad that I clearly remember that.  Yesterday, it hurt as much as I recall it hurting then.  She even commented that something was up with the nerve and she had to reposition it.  Fun times!

The fun continued in the endoscopy room.  We had to wait for the anesthesiologist.  I chatted a tad with the doctor and staff while waiting.  I was being chipper.  They positioned me face down and, eventually, started the anesthesia. My next memory was the anesthesiologist commenting that I had to stop moving.  I felt like he was reprimanding me.  I started crying and was thankful I was face down and no one could see.  Then I swore I could feel the procedure taking place. It hurt like hell and I cried from then until I was brought in the recovery, where the nurse commented a few times on when my husband would be back — he had to drop our son off at school.  I was still crying when he arrived and on the drive home.  It took me some time before I could tell him about it.

I have been under anesthesia many times and never woke crying.  It makes me very nervous about having my next epidural in three weeks.  I sent a note to my doctor telling her the above in a more vague manner.  She tried calling but I was at my son’s school’s Chili Cook-Off.  She responded via email and asked me to call her tomorrow.  I have a lot to consider in the next few weeks.

Sunday – Tax Day

I designated Sunday as the day I would sit down and do our taxes.  What a wonderful way to spend a Sunday, eh?  What could possibly go wrong or turn your mood sour?

This was the first year of doing taxes that I had to figure out how to account for Rob’s second career, self-employment. I had quite a learning curve.  I must’ve done terrible miscalculations at the beginning of the day because the amount we owed was obscene.  I decided to put it aside and clean.

EVERYTHING that was out of place pissed me off ten-fold.  Clearly the tax situation tainted my mood.  The cat peed on my son’s bed, again.  I broke one of my favorite mugs.  We had a flat tire.  NOT A GOOD DAY!

By the time Rob came home with Roger, I was a bit more relaxed.  We “played” a fact card game, did Roger’s exercises for OT, practiced his singing for School of Rock, did FastMath, dinner, and I attempted taxes again.  This time I found some errors and our owed money was more palatable.

In contrast, I am really enjoying this quiet Monday at work!

Follow up on yesterday’s 1-4

For those interested:

  1. Pain doctor – she is sending a referral to a neurosurgeon.  We both discussed the Orthopedic Surgeon who I previously went to and I said he was too “surgery happy” and I would prefer to see someone she recommended, since her recommendation for a surgeon for my elbow was fantastic.  She said the doctor she is sending me to was head at UC Davis and is conservative in his approach.  Also, we scheduled two cervical epidurals on March 7th and March 28th with a follow up with her in April.
  2. Dental cleaning – they said all is good and that I have been doing well with my upkeep
  3. Open House was really great.  Roger was super excited and he got to show us all around.  It makes me waffle a bit about our decision to switch to the STEM Academy at Donald next year.
  4. The Dead Milkmen were phenomenal.  So much fun!  It’s always nice going to a concert with most of the attendees your general age.  There were some younger kiddos as well (middle school aged).  However, about 3-4 songs near the end I was aching to go.  My back was feeling it!

Last night we got home too late and this morning came too early.  My back is in dire straights today which is calling for a lot of icing and, soon, a hot bath which will, hopefully, be followed by a nap.

Busy, busy day

So, as life would have it, I slept terribly last night.  I knew today was jam-packed and I am sure that this is what affected my sleep.  I kept telling myself I needed a good night’s rest to make it through today but I ended up restless.

Beside the daily grind of getting Roger ready for school and walking him to school, working at my job, and picking him up for school, the following is scheduled:

  1.  Pain doctor appointment – my lower back stinks today from not getting rest last night (BOO)
  2. After work, a dental cleaning – I had to reschedule since I had bad allergy attacks the day of my last scheduled cleaning
  3. Open house at Roger’s school (as well as In-N-Out Burger dinner there)
  4. The Dead Milkmen concert in Dallas – now this should be so much fun.  The last time I saw them I was in high school.  I believe it was 29 years ago (GULP) but it will be a late, late night for me.

Barring the doctor’s appointments, it should be a fun day.  Roger is excited for Open House and Rob is excited for the Dead Milkmen.  I am excited for sleep tonight!