Super Frustrated

So, a couple of weeks ago, I was admitted, once again, to the hospital in Chicago for migraine treatment.  This was admission number 16.  All since 2002.  This visit was horrible from the very beginning.  At about day 5, it hit me.  I finally reached the spot Chris got to about 4 years ago.  We keep doing the same things over & over, & I'm not getting any better.  What are we missing?  Why isn't something different being done?  Then, I got mad.

Let's start with the tale of the hospital stay.  Right from the start, the bad omens appeared.  My PA had written my admission orders the day before.  All I had to do was stop into the clinic for the obligatory visit & pick them up.  I saw the new PA, she said everything was ready to go & signed off on it.  15 minutes later, I asked about my orders.  They couldn't find them.  Then I was told that it took an hour for the insurance company to get back to them with the pre-approval number.  Yeah, whatever.  At least I was off  to the hospital, where everything should be smooth sailing.  Nope.

At admissions, they couldn't get the websites for either of my insurances to work to confirm coverage.  Um...don't we already have a pre-approval number?  Why do we need to call again?  Finally, 25 minutes later, I got to my room.  Ironically, it was the same room I was in during my March admission.  However, because it took me so long to get to the floor, I was too far down the list to get my PICC line ( think super IV -- starts in the upper arm & goes all the way into the heart) that day; they stopped with the patient admitted 10 minutes before me.  So a regular IV was started.  It lasted all of 10 hours before it infiltrated.   Amazingly enough, PICC line placement the next day was fast (8:15am; took 10 minutes, most of that was prep), & I thought I was on the way to no headache & home.  It was Tuesday.  I could see going home Sunday.  Nope.

The main medication they use up there is called DHE-45.  It is a vaso-constrictor & really harsh on your body.  The normal course of treatment for people is 9 doses over 3 days.  I always start with 18 doses.  9 doses, 24 hours, 9 more doses.  But I was scheduled for a Facet block.  That's where they take me to the OR & inject things in my neck; it's coming up.  The DHE started to make my headache worse, not to mention my hot flashes, so we had to cut the doses in half, & they ran them for a longer infusion time, which I don't tolerate well.  There were a couple of times I made use of all 3 anti-nausea drugs at my disposal instead of my usual 2.  In between doses of DHE, I would get IV Benadryl.  I hate the fuzzy-headed feeling I get with IV Benadryl.

On Wednesday, I was scheduled for my facet block consult.  Now, I will admit, I LOVE my physiatrist up there, Dr. Daniel Hurley.  He's super-nice, & has a hidden, very dry sense of humor.  I like to describe him as a smart-ass.  We get along great.  And, he looks like a combo of Jim Les & Anderson Cooper (Google him, you'll see what I mean).  Things like that always help. ;-)  I found out that I was his only patient on the floor at that time.  Which, to my benefit, meant that we had more chat time; although, I can honestly say I've never felt rushed by him.  I think he was there for half an hour.  At 7pm.  He decided (kind-of) what he was going to do -- he's a game-day decision maker with me, & I was made NPO (nothing to eat or drink) after midnight.

Thursday was facet day.  Bright & early, they brought me the oh-so-fashionable hospital gown to put on, & I asked if I could take a shower now since I wouldn't be allowed to after the blocks.  I was told no because they didn't know when the OR would call for me.  This was at 8:30am.  I went down to the OR at 12:05.  They OR may have gotten me a little early, because I'm usually take down about the time Dr. H finishes the case before me.  Nope; I had a good 45 minutes to look at the nurses' station.  Then doc & the anesthesia guy came to talk to me to make sure we were all on the same page.  I was almost right on the anesthesia drugs they were going to use -- I got 2 out of 3.  Dr. H decided that he would do the blocks at C2-C3 (upper neck) & he would be injecting lidocaine & dexamethazone (a steroid).  Then he's put Botox down around my shoulders.  Sounded routine.  This part was, except they gave me extra pain meds in recovery.  Good thing I didn't have to move on my own!  It was 3:30 before I was back into my room.  Still no shower, it had to wait until the next day, but food did arrive at my door 5 minutes after me.

Then the pharmacy started it's campaign against me.  I take estrogen because of a hysterectomy.  This hospital doesn't stock my brand, but that's okay because I do fine with the name brand they do stock.  Except they ran out.  I didn't get the correct dose for 4 days.  And did I mention that DHE gives me hot flashes?  And that the AC in my room didn't work (my room was stuck at about 80), & maintenance never came to look at it? 

Monday, we made a med change.  We changed muscle relaxers that I take.  I didn't learn until it was time to take it that they don't stock that particular med, either.  Then the pharmacist on duty got mad because I made my nurse call to double check for interactions with the meds I already take after he (my RN) got the new drug orders.  I had reached my breaking point.

The rest of the stay passed much the same way, except for when food services suddenly decided to start changing what I ordered, & give me random things.  The true highlight, really, was getting to catch up with my friend Lindsey, who is now living in Chi-Town.

So, finally 10 days later, I got to come home. The house doctor came up to remove my PICC line.  Looking at all the scars on my arm, he asked me how many I've had.  12 or 13, I answered.  Why?  Because he told me, repeated PICC lines can cause the vena cava to narrow, causing stenosis, which will lead to swelling in your neck & head.  Why hasn't anyone else told me this?   And it stormed hard the entire drive back to Dunlap.  Chris & I decided that it was time to do something; we just didn't know what that would be.

Now for the promising parts.  The first change I made was to my diet.  For the next 30 days (at least), I have cut out all kinds of things, just to see if it helps.

Yesterday, I met a new chiropractor.  And I have stumped him.  Dr. Jay told me that he has never met anyone who has suffered for as long as I have without finding some kind of relief.  The best part about the visit, & what told me that this would be a good dr/pt relationship was when he said that he honestly didn't know what to suggest to do, & suggested the plan we are going to follow.  It is this:  he gave me his cell # & told me that when I need to see him, call the cell & tell him what I need.  He will make sure it's done that very same day.

Then, I learned that my favorite physical therapist is back to work after a really rough second round of chemo, & even though she's not really supposed to treat patients, she would be available for me.  Makes me love her more.

Today, I went to see a dentist about possible TMD (used to be called TMJ).  I can't believe that in 11 years of trying to solve the migraine problem, no one has ever suggested to me that we look into this.  Dr. Wiley at Maple Shade Dental has moved into focusing solely on TMD & sleep apnea.  Never, anymore, am I surprised by a doctor.  This man amazed me.  Before he ever laid a hand on me.  He described the exact pain I have & the way my shoulders always "scrunch" up to try to relieve the tight muscles in my neck.  Still before an exam -- all just from the forms I had filled out -- he told me that he has no doubt that I have TMD, & probably have had for quite a while.  And, while he wouldn't bet the farm, he's 90% certain that we will discover sleep apnea.  He thinks that once we start treatment, I will notice improvements within a month, & within 6 months, be backing off of the meds.  I wanted to cry.  In relief.  Somebody actually has a solid reason for why I'm not getting any better.  And he thinks he can fix the problem.

Of course, my husband is still sceptical, but I feel hope for the first time in 9 years. 

Tomorrow, I start trying to rush the insurance pre-approval I need.  Everyone cross your fingers...

Rollercoaster Ride

So way back in April, I started on a 3 month challenge to lose 25 pounds.  At stake was $401.00 -- if I lost the weight in the allotted time, I got the money back.  But more importantly, I would be on my way to better health.  Today was the final all-or-nothing moment.  Had I managed to lose the correct amount?  I headed to the gym bright & early, with the weigh in scheduled for after my workout.  I only had .8lbs to go.  8/10ths of a pound -- that's around 13 ounces.  I could do that!  Imagine my surprise when I stepped on the scale to learn that I had gained not lost!  I was given until 5:00 to drop 1.8lbs.
  After coming home & having some breakfast, I sorted out a plan  -- I would go walk for an hour 7 then maybe hit up the sauna at the other gym.  Halfway through my walk, my inner self turned on me.  At almost exactly the 30 minute mark, my psyche kept whispering, "Why the hell am I working so hard if I'm just going to fail anyway?"  I couldn't shake the thought.  But I kept going -- pushing myself so hard I kick-started a headache.  Just what I needed.
  I never did make it to the sauna, but at 4:00, I was back at the gym to weigh in.  Had I done enough?  I stepped on the scale & closed my eyes; I needed to be at 205.6.  When all was said & done, I was at 206.6.  1 freaking pound!  But then kindness was turned my way.  Or maybe it was recognition for all the hard work I'd been doing -- officially, the word is that I met my goal.  So next week, I should have a check for $401.00, which is good because I need new running shoes.
  I slowly backed away from the edge that I was on (it was not a good time in my head), & quickly set the next goal -- 20 more pounds by Thanksgiving.

If I Could Turn Back Time...

  Tonight, Chris & I  have to go to parents' orientation at Dunlap Middle School.  Yes, Brogan will begin 6th grade next fall.  I am completely not ready for this.  How can that be?  It's not like I haven't watched him grow up right before my eyes.  Maybe I'm in so much denial because I don't want him to be that grown up yet.  I miss my little boy.

  This school year, as his last in grade school, has been hard all the way through.  Everytime an event comes up, I think about it differently.  It's not the Spring Play; it's Brogan's last grade school play.  Last night was his last elementary school chorus concert, & I had to miss it.  Not only was I over-booked (how do you manage to be in 4 different places at the same time?), but one of the committments on the calendar was paying me to be there, so that had to win.  I felt like a bad mom missing the concert.

This year was also the 5th grade trip to the Hult Center for "the" talk -- everything from puberty on.  Brogan, not knowing what the field trip was for, sincerely asked me if I was going to chaperone.  I couldn't say no fast enough.  I was more than happy to miss that trip!  But now, I wonder, "why?"  Am I really not ready to start thinking on my son in more grown-up terms?  I mean, he's my baby --he will always be my baby.

There have been some rough times in our house/lives the last couple of months, most of which aren't anywhere on Brogan's radar because I've done my best to shield him from them.  Now, though, I have to start struggling with how much to tell him of what;'s going on around him & how much to shield him.  I don't want him to grow up being naive about the world, but I also don't want to force him to have to confront the reality of how cruel people can be too soon.  Where is the right balance?  Is there even one?

One of the things that has recently happened had someone outside our little family of 3 questioning the job we are doing as parents.  So then it naturally made me wonder -- am I really doing a good job?  Brogan still tells me often that I am the best mom in the world (it helps that he has so little reference to go by), but am I actually doing the best I can?  I mean, I hate that all he has ever known is that Mom gets sick -- quite often -- with something most people dismiss like yesterday's paper.  And that at least once a year, I have to go to Chicago to stay in the hospital for an extended time.  Hopefully, I've done an adequate job of hiding from him how guilty I feel that I'm somehow cheating him out of something.  I'm trying to teach him that we play the cards we are dealt, but how can I successfully do that when I feel like the deck was stacked against us?  By the most minimal of standards, nothing is wrong -- Brogan is healthy, he's clean, he's fed well.  He seems happy.  So why do I feel like I've let him down?  That I've somehow not been giving him everything he deserves?

Maybe I'm overthinking this.  I mean, really, it's only 6th grade.  What am I going to do when he gets to high school?  Graduates?  Graduates from college?  Gets married???  Has his own kids????!!!  I want my little boy to stay my little boy.  But I also want him to grow into a kind. loving, caring man, just like his dad. 

I don't seem tohave any answers for myself.  And maybe I'm not supposed to.  There's a reason why we aren't handed instruction books along with our baby & the hospital discharge papers.  I'm hoping it's because there isn't really anyone out there with the answers -- not even the experts.  We all have to muddle our way through the best we can.  Does that make me a bad parent?  I like to think not.  I guess the "answer" doesn't come until he's all grown up.  If he still like me (let alone loves me) as an adult, maybe then I'll feel like I've done the job right.  But who knows?

Maybe by Freshman Orientation or graduation it won't bother me as much.  I won't hold my breath...

It Can Only Get Better From Here

  So i am starting my second week of my 3 month challenge.  I already seem to be adjusting to the new eating habits well, & can usually talk myself out of eating something I know I shouldn't.  Getting back into the swing of working out is provong a bit harder.  Not because I talk myself out of it (quite the opposite this time, actually), but because things I can't control get in the way.  Last Friday, I got too overheated with just 2 toning stations & 10 minutes of cardio to go.  Today, I was 45 minutes into the workout when I got slammed by a searing pain in my head.  Determined to stick to my new resolve that a headache was not going to keep me from the gym, I tried to push through.  I almost puked on the leg machine.  My trainer made me stop.  I am angry.  Not with myself or my trainer, but with this intangible demon I keep having to fight.

  Tomorrow is my first weigh in after starting the 25 in 3 challenge.  I have been at this one whole week tomorrow.  Will the scale move?  I don't know.  But I'm determined not to stress about it until I've had 2 check-ins without any loss.  Then we can aggressively tweak what I'm doing.  I know I'm already making better choices and can still have things I want (hello, DQ?), but not as often & not as much (like the mini blizzard last night instead of the usual medium.  and the strawberry one, not the turtle).

Do I still have quite the battle to keep fighting?  Yes.  Am I still a little frightened about it?  No question.  But, most importantly, am I determined to succeed?  Just watch me.

At Least I Survived...

So, today was Day 1 with the trainer.  I wasn't sure how it would go because I didn't really sleep last night, & was dragging already at 7:30.  But, I got dressed in the workout clothes, anyway, & headed to the gym.  Today's trainer was Pat -- apparently at this gym, they divide up the members coming in among which ever trainers happen to be there at that time.  We started off easy, some arm work machines set at 40lbs.  "Easy, peasy," I thought after finishing my 3 sets of 15.  By set 2 of machine 2, the jacket I had worn in was off (the gym is kept pretty cool, plus it was windy outside).  At machine 3, my arms were protesting, & I only completed 1 1/2 sets.  Then he sent me for 5 minutes on the elliptical.  Um...yeah...going to have to work up to 5 minutes.  I did 1, then switched to the treadmill.  Back to more weights.  All arms today.  This was getting brutal.  Then we moved on to triceps.  That machine I could do my 3 sets of 15.  5 more minutes of cardio, bike this time.  Then came one of the few things I was hoping would be a long time coming -- plie squats while holding a 15lbs dumbell.  I made it through 20 of the 45.. Although, I did get told I had perfect form.  I wonder if that could be because my tush is so big it can't help by stick out?  Finally, bicep curls (thank you, BodyPump for teaching me squat position & biceps curls with a bar) -- again, only 2 sets.  I finished out the day with 10 more minutes of cardio, & gladly was done.
 To leave this particular gym, you have to go down about 4-5 steps.  At my first step down, my legs felt like jelly.  But, surprisingly, I felt good.  I had done at least half of eveything asked of me.  And I kept going the entire 70 minutes of today's session.  Now that I know I can make it through the time ,
     side note:  the last trainer I tried to work with (at another gym) didn't have any cardio involved & I only made it through 40 minutes with her. hmmmmmm...interesting...)
I can start to work on making it through all the reps.  Baby steps.  that's how I'm going to keep focused on this.  Well, that and the $400.00 I get back if I lose the 25lbs in 3 months!

25 in 3

  Today, I started a program at a local gym.  The goal is to drop 25 pounds in 3 months.  Today was "nutrition day."  Simply put, that means that I was given a whole new way to look at the food I'm eating.  Right now, I'm feeling a little overwhelmed at all the info to process. 
  Will it be hard?  Most certainly.  Am I going to like it?  At times, probably not.  Will I succeed?  We'll find out July 5.  So how am I feeling about this next step in life?  Let's see...tired, nervous, excited, overwhelmed, anxious, fearful, determined, apprehensive.... I could keep going, but I think you get the idea.  Already today I've thought carefully through each food choice as I was making my lunch.  The biggest challenge I see is making the change family-wide.  Chris, I think, will go along without too much of an issue.  Brogan, though, has turned into a picky eater.  Time will tell.

Now, to get through the time with the trainer tomorrow...

Off we go...

  When something happens in my day, be it funny, exasperating or whatever, my first thought is to email Chris at work.  Apparently, I do this quite often, as he has said to me, more than once, "You need to have a blog.  Then you won't send me so many emails in a day."  Maybe I do.  Need a blog, that is.  As a stay-at-home mom to an only child, it's just me & the cat most days.  And she's not exactly a master of conversation.
  So, now that I've kick started the next phase of my life at a new gym, I decided to jump on the blog bandwagon.  Will people like it?  Will they even read it?  Who knows.  But at least I have a place to vent, or clear the random thoughts that come to me throughout the day.  A place just for me, where grammer doesn't matter (mostly because I think faster than I type), & I get to choose the subject.

So, if you're so inclined, come along for the ride.  There's fun to be had somewhere.