Thursday, September 30, 2010

Show Us Your Life - Dining Rooms

Kelly at Kelly's Korner is doing her "Show Us Your Life" meme's again this year and this week is Dining Rooms.  Join her to see other dining rooms across the blog world!

We have recently moved (shocker, eh?) and the dining room is the only room we have "together", so enjoy your visit.  lol 

And yes, before you ask - we DO have a second refrigerator in our dining room.  (Long story?  I'll skip = short story, I need a refrigerator I can reach the ice AND a refrigerator I can reach the food - cannot bend, lift, or twist with my nerve damage and spinal cord stimulator, so.......we adapted!)  And the really really sad part?  We have a THIRD refrigerator in the garage.  It is a hoot when the boys are looking for food - and we say, "Why dear, why are you having so much trouble finding that?  You only have 3 fridges to search!"  Ha!

Love that extra fridge!  (This is the one I can reach the food AND the filtered water.  Ha!

A beautiful glow at night.

See those Window "Mistreatments" ?

We've kept this gorgeous table covered up so long I forgot we had it!

Because it's a lovely rental, we can't take credit for the BLAH boring wall paint, or the builder grade boring light fixture.  If you look at my photos on this meme last year, check out the color I enjoyed.  And now?  YAWN.......I'm trying to stay awake to get this posted.  lol

Last Year's COLORFUL Photos

The rest of the rooms in our room would better fit the "Oh no my house does NOT look like that" blog carnival I've yet to find.  lol

Thanks for stopping by!


Babies, Arthritis, Low Thyroid and Fluoride - Must See!

Do you have a baby who drinks formula?

Do you ache all over?

Do you have arthritis?

Do you have low thyroid, or Hypothyroid?

What about skeletal or bone problems?

Higher risk of bone fractures?

Do you or your kids have white or brown splotchy teeth?

If so, it might be wise to discontinue ingesting fluoridated water and products.    This video shows who fluoride was meant to work TOPICALLY and by putting it in our water supply, we can be "over-dosed" with fluoride.  Folks in the above categories are especially at risk.  Please watch and see if anyone in your family needs this information.

Please - you will be glad you did. 


Tuesday, September 28, 2010

So What Happened To Me? Part 6 - SCS Implant and Beyond

After my SCS trial ended, I was anxious to get the permanent implant, provided I wasn't going to suffer as I just had with the trial.  After spending an unplanned 12-day hospital stay (acute pancreatitis and gallbladder removal) and with the holiday season, it wasn't until January, 2009 that I finally had my SCS implant surgery.


After the extreme difficulties I experienced with my SCS trial,  my SCS programmer,  (having passed out during my trial unable to watch what I was being put through),  had promised to alert the Neurosurgeon who would be doing my implant. (This was the only way I agreed to move forward -making sure that torture would NEVER happen again.)  She was almost positive he would choose to use paddle leads, which are sewn in, rather than go with the percutaneous leads that are threaded up the spinal fluid.

Percutaneous (left) and Paddle leads.

For unknown reasons, this did not happen.  As I became panicked that he did not know and tried to tell him myself, he asked the nurse and programmer if I had had a psych evaluation.  This ticked me off!  This man did NOT know what had just happened to me.  Andy was beside himself, knowing I was likely to back out at any minute if something wasn't done to correct that situation.  Just prior to my surgery, I was talking to the head nurse about how my disastrous trial experience, how my programmer had passed out due to the utter torture I was being put through, and the nurse stopped in her tracks, asked me detailed questions and ran off to talk to the NS. 

As I was prepped and put in position on my stomach, the NS promised me I would not suffer, he would not hurt me.  The most I would feel would be "pressure".  I told him that was what I was told during the trial as well and it made no difference.  A little clueless (due to lack of information), he proceeded still assuring me all would be fine.  Within minutes of starting the procedure, however, the neurosurgeon began having trouble.  So here we were again.  I wanted to cry and did.  Do I stop the procedure, turn back now, and give up all hope of getting some nerve pain relief?  Would I end up paralyzed if I went forward?  Thankfully, this NS had strategies that did NOT involve just stabbing leads up a patient's back and hoping for the best.  He decided to go much higher as an entry point and that worked.  He still had all kinds of trouble, but he stayed patient and calm and did not let me up until everything was perfect.  Thank goodness, FINALLY.

What makes the permanent implant a much more involved surgery is there are several components.  The leads must be placed, whether by threading through spinal fluid or sewn down (paddle leads).  Then, the battery pack must be placed through an incision, usually in the upper buttock/hip or abdomen.  Then the wires that will communicate between the leads and the battery pack must be tunneled down your back, right next to your spine, just under the skin surface.  After surgery, the patient is quite sore, and in multiple places.  I was lucky enough to already be numb in my hip/buttock area and did not suffer from the adjustment to the battery pack. I found this photo and shows how it really is:


In both my trial and permanent procedure, I was awake with a little Versed, taking the edge off. I was fully aware and knew each step of the way.  This for me was very difficult, knowing how much trouble they were having each minute.  During my implant, a nurse kept asking the neurosurgeon why he was doing things so differently than ever before - he kept stating "Her back is odd, there is an anomaly, I do not know what to do exactly just yet".  Ggggrrrreeeeaaaattttt, was all I was thinking!

Placing my leads was very frustrating because when he would finally get the lead just where he wanted (I got 2 leads, one for each leg), the lead might then "fall off" and go "in the ditch" (words I heard them say).  If the lead did not stay midline in the spinal canal, it could cause problems, not work, cause dangerous jerking of muscles rather than mild buzzing for pain relief.

As my engineer husband has explained - I have 2 leads in my mid-back with 8 nodes on each one.  Teeny tiny electrical signals are emitted in reality but my brain thinks we have a major massage action going on from hips to toes.  Quite the "fake out" for the brain!

After the procedure, I was taken back to my room where my husband was thrilled to see me NOT having a nervous breakdown (as I did from the trial!).  He had heard no screaming during, so that was also a positive sign.   lol  However, it was quite odd that this business-like doctor  would not leave my room.  He was fidgeting and upset, repeatedly apologizing for hurting me, he had promised he wouldn't, he felt so bad, was I ok, etc.  It was ODD.  I didn't know he had that much "caring" in him - being such a great technical doctor and not really having developed much of a beside manner.   Even the nurses were looking at him oddly, but still...he did not leave until he was sure I was ok, over 30 minutes later.   I guess he knew then what I later learned - how dangerous this was for me, for the docs to have now known of the "anomaly" - that was why the trial was such a disaster and that doc had no expertise to work around it and only by the grace of God did I not end up in a wheelchair from that experience.  I do not write this to scare folks considering the SCS, but to beg you to pick your doctors well......don't just let any yahoo do it.  If you are a difficult case, make sure all parties understand that.

At the end of the day, I had a successful implant.  However, once again, I REFUSED to get off that table until the leads were in the right place.  This upset the NS because, according to him, he had never placed leads so low in someone's back.  "Normal" placement is around T-9 or T-10 and my leads are now around L-2, MUCH lower than normal.  However, it is at this placement I get phenomenal coverage.  Any higher and it buzzed in all the wrong places.  He did grumble a little about that at the time, but I was adamant and not moving.   I feel this is a KEY to my success.

My SCS unit was turned on AT surgery.  I have read other doctors prefer their patients to recover prior to turning it on.  I am distressed to hear that, because by the time you recover, leads are "scarred down".  If the buzzing were not in the right place, how would they fix it?  I strongly suggest patients request the unit be turned on immediately, even if it will be further tweaked later.  It is simply imperative to know at D-day if the leads are properly placed for THAT patient.  We are all wired differently and the universal setting does not work for all.

I have spoken to MANY SCS patients (successful or not) and the ones for whom the SCS did not work almost ALL report being put under and asleep during placement and not being asked where they feel the buzzing.  The doctor placed the leads where he/she prefers to place them and was done.  This is VERY common.  I am here as a beacon to BEG future patients to take an active roll in placement.  You have to be able to report where you feel the buzzing - there is just so much the programmer can do if the leads are in the wrong place.  I feel like repeating this until you are sick of reading it.  This is KEY.

I have 2 very close friends who have had this procedure done and it wasn't successful and BOTH report being thrilled they were put to sleep and then forgetting that DUH, they were then unable to alert the doc to improperly placed "buzzing".  When my leads were put where the doc prefers to put them, I buzzed in my stomach and front thighs.  I have no pain there.  I needed the buzzing in the BACK, from hips to toes.  That is why he had to pull the leads all the way down to L2 to accomplish that.  This is just how I am "wired" inside.


I followed ALL rules for 8 weeks during recovery, being careful not to bend, lift or twist AT ALL so my leads would "scar down" and not move.  Since March, 2009, I have been a new woman.  My husband got his wife "back".  There is almost nothing I cannot do (keeping in mind I do not life, bend or twist and do not pick things up over 5 lbs.).  But given those restrictions, I can go to the mall for however long, I can go to movies, I can go on trips.  I can go to the salon and get my hair done.   My previous 20-30 minute window for standing/sitting?  Gone.

I still cannot ride for more than 4 hours upright, so we do travel with my recliner in our van.  Our family lives over 8 hours away.  Think "the Clampitts".  lol  We have a Sto and Go Chrysler Town and Country and the seats all fold flat, allowing us to put the recliner in.  Not safe, but doable and I'm able to travel and see family, PLUS have a recliner for me when I'm in strange places. 

Now, I won't lie - I do "pay".  I do have to recover.  But while at the mall, I am not dying of pain.  It is incredible.

Since the implant, I have gone back 5 times for reprogramming, and I love my latest program.  It is set up so that I can dictate how much I buzz PER LEG!!  I turn the unit "on", set an initial intensity level, and then decide if my right leg needs more or less and so on.   And the most amazing change?  Instead of charging sometimes every 3 days, I can now go almost a month!  (Patients are usually advised to charge once a week, but I have no need and can go almost a full month.) Because my doctor does not allow us to be trained in the programming, I do not know what terminology to use to explain the frequency or band width or anything regarding this new program.  I do recommend you ask your programmer to print off your current "good" programs to save in case something happens and they are accidentally deleted or your unit dies and has to be replaced.  This way they can be easily recreated.

My doctor is very strict and does not allow his patients to be given information on how to program their own units, feeling we could really hurt ourselves easily.  Other units are designed to be programmed by the user after a training session.  However, I am able to call up my programmer ANY time and she will meet with me to address any new or current issues.   Sometimes the body builds up resistance to a current setting and a new one makes all the difference.  My doctor wants to be aware of any changes I have to my system and he wants his professional programmer to address them.  Higher quality service than normal, I think!

Keeping it real - As I write this, I am in a horrible pain flare lasting over 5 weeks now, resulting from a recent move and other life stress and I am not doing good.  But, the SCS is still my comforting massage buddy and without it, I honestly feel I would be in the hospital dealing with this pain.  I have done the big 'no no' - gotten "behind" on the pain.  On a normal day, my pain is about a 5 out of 10 on the pain scale.  The last two weeks, it has been 6 to 7 and that is tough.  Shoot, a 5 is tough, but I understand there is no cure for my condition.  Folks who expect their pain to be cured are NOT good candidates for this procedure.  But to sit here with horrid pain and be able to turn my SCS up and help distract my brain?  Priceless. 

I hope my details help others who are researching and considering Spinal Cord Stimulator therapy for their pain conditions.  I pray for everyone to get the relief they deserve.

 ( ( HUGS ) )


Monday, September 20, 2010

Today's Chronic Pain Funny

No surprise, my pain is jacked up to high levels.  And normally this is fine unless I have appointments. and this week I have the dentist tomorrow and an Asperger specialist on Wednesday.  Not good.

So I call the dentist to cancel, hoping to reschedule.  She has nothing until November, so I keep my 3pm appointment tomorrow.   I mention my "back to back" appointments and pain levels.

Later today, she called with a morning cancellation.  Now, she knows I can't do morning appointments (takes until at least 1 pm to get my pain-wracked body moving.  A 1pm appointment is early for me, lol.)   

I tell her I'd rather keep my current 3pm appointment but thanks for calling.  She says, "Well I knew you have back to back appointments."  

OH my, little does she know I meant back to back DAYS, not the same day.   Ha! 


Wednesday, September 15, 2010

Bathroom Workaround

I've mentioned before that I cannot bend, lift or twist.  Can you imagine that?  Think of the things you do every day that requires those movements?  Do you know anyone who can't or shouldn't bend/lift or twist?  I thought I'd show you how we make this work.  This idea works well anywhere, particularly bathrooms and kitchens. 
In our new bathroom, the counter tops are "normal" height, whereas the other house has "gentleman" height, for taller folks.  This creates a problem as even brushing my teeth causes a "leaning" situation that hurts my back.  The vanity is nice and large with tons of drawers, BUT I can't use them.  Bummer.

And something we really miss is the huge linen closet that we had behind the vanity at the other place. I kept much of my items in that closet, easily reachable.  So what to do?

We were shopping at's the other day and saw this:

For only $14.99, we thought maybe we had solved the bathroom problem.  And we did!  It works great(Sadly, I can only find it online now for $29 - $35.  Check YOUR store and see if they still have it.)  Here is a link to the higher priced product:

You can actually buy 2 and stack them on each other if you have a taller space.

Kitchen Worx Stackable Basket

It is not the cutest thing ever, but it is WONDERFUL for my needs.  Always be ready to think outside the "box" - using a kitchen shelving system for toiletries.  Win!

P.S.  I'm not the only one who uses it!  lol


Friday, September 10, 2010

Pain - Who Suffers Most?


I was thinking last night as I cried hysterically for 2+ hours from nerve pain that would not abate.  After availing myself of all my options - and nothing left to do but wait.  Wait it out.  That intolerable prison of burning pain that takes the life right out of you.   I'm usually much better at not getting "behind" on my pain, but silly me - I thought I could run my own errands yesterday and give my poor, over-worked husband a break.  I was wrong.

I was thinking.......what could be worse than this suffering?  And then I wondered - how does my family feel?  Or my friends?  How to help?  Feeling helpless themselves?  I understand - before this pain journey, I don't know what I would have done if a friend did nothing but cry and all I could offer was to sit and let them?  Perhaps cry with them?  Nah, I would have avoided that too, come to think of it.

But for those who love someone in immense physical pain.......I your pain worse?   Wishing you could take the pain, or share it for just a day?  Could you switch legs with me so I can remember what it was like to have a day before I learned that what we take for granted can be gone in an instant?  And that medical science has limits and that sometimes all that can be offered does not even come close?

The wait for a new invention, a new cure, an enlightenment that will regenerate my nerves.  How long will that wait be?  The exhaustion of trying this med, or that med.  This supplement or that supplement.  This diet or that diet.  Or what about this exercise or that exercise?  Always chasing, never finding.

I believe especially in America, we tend to preserve life as long as we can, keeping folks alive for OUR benefit, so OUR suffering will be less.  And many of us suffering, WE hang on as long as we can so our family won't suffer.  Is it selfish to want relief?  Does part of our pain come from a lack of attention to our own needs and a super-focus on others' needs/problems/issues?

And I guess I just wanted to put out there to the world, with  a current lack of a legal document at the moment.........if something should ever happen to me (accident, surgery, procedure) that my life would be worse, my pain would be greater, or I would be further disabled and a choice to prolong my life must be made?

Due to new circumstances that have surfaced, I now realize with certainty that those directly near me who would have the responsibility to make that decision may be truly unable to do so.  Therefore, I put this out there for anyone who might be involved:

Please, let me go.  Release me from this prison of pain.  I won't do anything to hasten that final relief, but do strongly plead that my request be granted.  Turn your focus on those who would struggle to allow this, explaining in ways their logical minds won't grasp easily, that this is the compassionate thing to do.

I remember as I was doing the pre-op procedures for my 3rd surgery in 12 months.  I was asked if I have a Living Will, and I said no.  I did request a DNR (Do Not Resuscitate) though if something should happen SO wrong during that procedure that keeping me alive would make my life worse than it already was.  The nurse freaked out and said I was much too young to talk like that.
Well, what business was it of hers, someone who does not know what I go through every day?  Why must I be forced to not only live in 24/7 burning, searing pain that can cause me to cry uncontrollably for hours, but if I bravely try a new procedure and something goes horribly wrong - I must suffer that too?  Why don't I have the right to say, "NO, I'm done.  If I'm dying, let me go.".  That makes no sense to me.  Why bring me back to this torture?  Plus whatever else just happened? 

I am not depressed, I am medicated.  Pain IS depressing.  When I suffer horribly for days and weeks, I get frustrated.  Please don't be alarmed.  Just feel better making sure my wishes are known.  And perhaps helps others understand a bit more what they might not otherwise have known.

Now, back to my life, which I do hope is long and fulfilling.  There is an answer - I will find it.  I am tenacious like that.


Wednesday, September 8, 2010

Barbie Hair

I was told today that I have "Barbie" hair - thought that was funny.  I do love my hair this style and wish I had the strength to do it more often.  It is accomplished by using a round brush in sections with the blow dryer.  No curling iron or hot rollers.  My hair has enough body and curl, I guess.

I am still in the "grow out" for the curly style coming up one of these days.  I'm loving it and hubby is over the moon - he LOVES my hair longer.  I am aware that I am 44 years old, and won't be growing it to my hips,  lol.  (Pointing that out in case anyone is worried about that!)  

Here is the Barbie photo:

September, 2010

I was looking through photos and my hair was so much shorter just a few months ago (this style flat-ironed straight with no curl shortening it:

April 28, 2010

And 8 months ago, a few months after I started the "Curly Girl" journey - how short my hair was with it naturally curly:

December, 2010
The length difference between the last two photos shows you HOW much my hair spirals up when curly, losing length.  Depending on the type of curl dictates how many inches you "lose".

Friends have thought me a little odd that I not only care what my husband thinks but also wear my hair to suit his preferences.  For us, this is a "give and take" - each doing these "easy" things to bring joy.  For example, he shaves on weekends because I prefer to kiss a smooth face.  (Most guys we know take the weekends off from shaving.)   I figure, I can't give him a voice like Whitney Houston or a back end like J Lo, so why not work with what I have?  Is that so "old-fashioned" or oppressive to women?

When we were first married, he commented on my hair all the time.  It took me a while to realize he really truly LOVES my hair.  When he would run his fingers through it spontaneously and then started brushing it as affection?  I realized then that this guy takes his wife's hair seriously!  In fact, it's been a standing "joke" in our house that if I ever come home with my hair chopped off in those new spiky styles, he will know I want a divorce.  lol   He does plenty of other quirky things that make ME happy.  Two peas in a pod, I'd say.

Also, he has told me he loves when I change my hair up - whether with color or style.  When I occasionally do go "curly", he loves it!  I was playing around with the mosaic maker at (free) and made this collage to show how much I've changed over the years.  Ha!

How fast does your hair grow?  Do you care what hair styles/colors your husband prefers and do you wear your hair to suit him?


Friday, September 3, 2010

Are You a Highly Sensitive Person?

"You're so sensitive!!"

Sound familiar?

Probably my biggest category with sensitivity involves "Sensory Issues".  My parents, sister and friends can all attest through years to my "oddities".  And then both my boys have "issues" as well.

Anyone in your life.....

  • Startle easily?
  • Get overwhelmed with too much to do at once?
  • React to scents/foods/sounds/temperature?
  • Work hard to avoid mistakes or forgetting things?
  • React strongly to hunger?
  • Bright lights bother them?
  • Other people's moods affect them?
  • Like to keep things organized?
  • Avoid stressful people/situations?

I could go on.  If you are living with this type of person, did you know this is innate and can't be changed?  They aren't trying to be high-maintenance?  15-20% of people have this.  It is not new, but often misunderstood.

Here is a quick self-test.  A score of 14 indicates HSP.  I scored 26.  Holt had a 15, but I suspect it should have been higher.  lol

UPDATE:  Andy took it and scored a 14.  I think we have an entire family of HSP's.  

What to do if you have a HSP in your life?  Be understanding.  Try to limit the annoyed reactions.   If you've noticed, when our triggers are reduced, we are very enjoyable!  Our gifts of being so sensory perceptive actually come in handy when not overwhelming us.

Here is another helpful link:

Highly Sensitive People
2 books I recommend - The Highly Sensitive Person and The Highly Sensitive Person In Love  by Elaine Aron, PhD, and both have been very helpful in giving ideas on how to live harmoniously with folks who don't share this trait.

Just another one of our gifts!