Chronic Pain

A 51 year old female living and dealing with lumbar back pain and fibromyalgia. Sharing things I do for relief, reduce stress and control weight gain.

Friday, August 31, 2012

Goodbye Isaac

It was one of the strangest hurricanes we've seen in my lifetime.  Slow moving.   It has moved on to other states but we continue to get on and off bands of rain coming around.  Last night was really strange after being home with my husband Tuesday thru Thursday.It made last night seemed like a Sunday night.  

Monday was when my friend came to visit and we enjoyed the day in the pool. It seems a few days ago.  I can't believe it's Friday again. The next day was all about getting ready and picking up anything that could be picked up and taken away by the strong wind gusts we expected and were warned about.  With all my plants and other things in the yard that was a job in itself.  Like packing for vacation.  Yesterday evening, we unpacked.  Pulled all the plants and other misc items from shed.  Even the garage was full.  Garbage cans, front yard plants, flags and of course the generator and gas cans.  For as long as the storm hung around our town really did fine.  Our biggest problem for a lot of surrounding parishes is flooding.  Not flooding into your floor where you need new carpet.  I'm talking about flooding into homes all the way up to roof tops and covering some homes.  We are so blessed to not have any damage at all.  

We were not so lucky with Gustav.  It took D days to clean the yard and of course as soon as our road was cleared from both ends to get out we had to have a tree top removed from our house and then a new roof.  While we were listening to the radio during the power outage they were comparing to Gustav a  as far as down trees and power lines.  This storm brought that but in very low numbers in comparison.  We were also very fortunate in our amount of time that we endured no electricity.  It started flickering on Wednesday after lunch.  I believe it finally went off for good around 1.  Not so bad durning day but it's always creepy when it gets dark.  Especially with no street lights outside.  

We lost cable, Dish and internet so it came down to reports on the radio and when we settled to one room with hurricane lamp D managed to fix things to watch movie through his computer on tv screen in bed room.  We had the generator keeping both freezer and inside fridge running.  No need for computer since no internet :-(  We also have a portable ac we bought after Gustav but it was comfortable without it and had fan blowing on us and stayed comfortable with just that.  

Thursday morning came and we checked in on family friends.  Who had electric and who didn't.  D was preparing to go and search for gas.  We were down to 2 cans left with no way of knowing how long it would be.  He started calling around to nearby stations.  They were either out of gas or had gas but no electricity to pump.  A friend of ours never lost electric and offered there gas if we would have to drive very far to get some.  As we were planning what to do it came on.  Woo hoo.  We consider ourself very lucky after dealing with 2 weeks for the last hurricane.  The total time was less than 18 hours.  We have family and friends who are still out.  But everyone is fine and dealing with it.  Our electric crews are working as fast as they can to get things back in order.

All day yesterday we had light rain here and there but nothing like Wednesday. It rained from Tuesday night until Wednesday night when we went to bed.  There were still wind gusts yesterday.  Sometime when things were quite you could hear the whistling outside or the push of the wind against the door.  Storms are so unpredictable.  You just never know when your in the clear for sure or not until the professionals say so.  

I am grateful to be feeling so much better as of yesterday afternoon.  Back to my "normal" pain level.  The last two days were pretty intense.  Not that I had anything to do.  Sometime it's better when your busy when I'm hurting that much.  Being bored keeps you focused on the pain.

I went out to run a couple of errands this morning and had planned to get in pool after. After I had lunch and started hearing thunder.  Wow, lot's of thunder and then a huge down pour.  So much that it filled the pool to the top again.  We'll see, maybe it will clear up.  

No luck with the video again.  Every time I try it says "sorry blogger had a error in uploading your video"  I'll have to do some research. 

Pool full to the top

Jax; Dallas needs one of these. 

The things you take for granted someone else is praying for. 

Wednesday, August 29, 2012

Isaac hanging around

This storm as you know if you've been following has been a slow moving storm. It made landfall at 6:45 pm last night. New Orleans and surrounding areas impacted long before that.

Our electric has been on and off all day. It just can't seem to decide if it wants to be on or off! Right now as of 4:00 pm there are 659,010 customers without power in Louisiana as of 4:20 central time and we're once again one of them.

The barometric pressure with this storm has made my back pain very intolerable. Nothing I've tried helps. I'll survive, but it makes an already uncomfortable situation worse. It's been raining and strong winds since around 7 this morning and not expected to chance any time soon. Overnight their saying. Most times the stimulator is helpful but I have it pretty high and not getting much relief from it today.

The generators running. Ready for the darkness. The minute D started it up memories came flooding back from 08 with Gustav. This is D and ours 4th hurricane to ride out together. Even with the generator running Dish and Cox is out, so we are listening to radio for updates right now. No Cox, no Internet either. We're so spoiled.

Had a few videos to post but blogger app only allows photos, not videos. Will have to wait for internet to be back.

Monday, August 27, 2012

WW's weigh in & anxious Monday

What a positive start to the day.  Another 2.5 pounds.  I'm at 7.5 now.  4 inches.  When I entered my weight and measurements this morning it said, "I was loosing to fast at an unhealthy pace" What? Are you kidding me?  Seriously, I started July 9th.  That makes 7 weeks.  Averages out to a pound a week.  I would assume that's a good pace.  Oh well, this is my big happy today.  Every other thing going on I'm anxious and nervous about.  Can't seem to even sit still this morning.  

I'm waiting on pins and needles for a phone call on decision if hearing  scheduled for tomorrow will still happen.  My prayer is they close at noon.  (my hearing is at 10:30)  Obviously I wouldn't want anyone to be in danger or not be able to care for their own family.  I mean if it is still safe to be out tomorrow in the morning I hope they a least do some of the cases in the am.  It's not up to me though, and I need to stop worrying about it.

Then there is this storm coming.  What to expect?  Who knows?  That's how a hurricane is.  It can blow over and shock everyone and we'll say, "thats it"  "thats all you got?"  I remember one like that just can't remember the name.  It was right after Katrina when we were all still nervous and fearful of another hurricane to battle.  

I started writing this in the morning waiting for my friend to get here.  We planned on hanging out by and or in the pool, lunch then some more lounging around.  She was running a little late so that's when I decided to get started on my blog for today.  She got here around 12:30.  We watched a little of the updates on Isaac,  chatted a little and she shared some pictures of her cute little grandson.  He just had his first birthday.  

We headed outside around 1 something and as we were getting ready to get in the pool my cell rang.  It was my caseworker.  I knew right away from the sound of her voice.  There was no hiding it.  She said, "I'm sorry, it's been cancelled"  No clue or answer as to when it will be rescheduled.  I'm not the only one.  Others effected too.  I've just waited so long and I REALLY need this to be over.  Dumb storm.  Ok, I'm over it.  I'm going to enjoy my afternoon.  The calm before the storm.

Enjoy we did.  We didn't get out of the pool until 5:30.  My husband came home and we were thinking gosh what time is it?  He said he was just letting us know he was home and was heading right back out to try for C batteries and more gas.  (some stations sold out)
He was impressed with the umbrella my friend brought over to use to stay in shade in the pool.  It's portable and you get a reasonable amount of shade from it.  She's my crafty friend.  She can make something awesome from a sheet of paper, lol.   It's meant to be bolted down and it was pretty breezy by the pool.  We knew it would topple over for sure.  If you look real close you'll see she carried 2-30pound bags of sand up onto deck to weight it down.  I was thinking in my head, she's going through a lot of trouble for this shade. 

cantilever  umbrella
After it was all stable and open I realized how nice it was.  Her grandson was going to come for a short time with mommy, but didn't,  and swim.  It would have been great for him also.  I think we will have to invest in one.  Very nice.  Matched perfect with our antigravity chairs!!  She bought it to provide shade over her swing she never sits in.....that now she will sit in because it will have shade :-D  Leave it to this friend to load this thing in her car and haul it over here and set it up.  It was soooo worth it.  We had the best time.  No worries.  No interruptions.  No watches or clocks to check.  It just didn't cross our minds what time it was.  That's my kind of friend visit.  It was a long time coming.

provides large area of shade
We caught up on a lot.  I wouldn't say everything, but we put a big dent in it.  I haven't laughed that much in a while.  Thank you L.  <3  She is off on Mondays.  I have one a month.  We're considering making it a standing date.  I still can't believe we stayed in the pool for 4 hours. Taking care of ME!  Like I said, the Calm Before the Storm.  Tomorrow morning, we won't feel so relaxed and free to just float around and have fun with no time restraint.  

Take care everyone.  If your in the area of storm we will start to see the effects tomorrow afternoon.  If we keep electricity I'll keep you posted.  If not, I'll see you when I see you.
D got most of things in yard picked up this evening.  We just have to work on our plants in the morning.  If you don't have to go out, please don't.  Especially after tomorrow night.  Stay put and enjoy some family time.  I have to go now and check on my mother.  Her area may be hit even harder than us.  

God bless and hope your pain free.  

Sunday, August 26, 2012

What will this week bring?

I gave birth to it :-(

What a week end.  D worked in the yard everyday after work to get ready for Saturday when he had help coming.  He had everything framed up and ready to go to get going on the deck.  As usual the evening before I was pretty apprehensive about having guests. Over night guests at that. For one thing it rained from around 7pm until 10 so everything was soaked all over again. So my OCD was kicking in about brining mud into the house. Secondly I just never know from day to day when I get up what I will feel like.  This past week has not been one of my better weeks.  More bad days than good. Which meant less exercise.  Which means I'm not sure what to expect on the scale tomorrow.

I know I wasn't the best hostess to my company.  Watching everyone work out side and I mostly inside was hard.  I had to fight the blues.  I used to be outside doing what everyone else can do.  I look like I can do anything if you just look at me.  I'd go out every now and then but felt pretty useless just standing around watching.  A one point I pull out my antigravity chair but felt bad to be sitting around while they were working so hard.  Even D's sister jumped in often when they needed another pair of hands for leverage. 
Getting ready

tarp necessary for shade and rain cover

you go girl, what a team

We had to make them stop for lunch and they ate outside working with the sub in hand.  Sister in law and I ate inside and visited a bit so I had a minute to sit down and relax.  I just hated being left out so bad I tried to hang with them all day and it simply wore me out.  Silly huh?  Doing nothing, absolutely nothing made my back hurt so bad. About an hour before we had dinner my sister in law, her niece and myself decided to get int the pool for a while.  Kind of felt guilty since the men were still working.  We cut up with D's niece quite a bit and I know that has something to do with my back pain today.  A little to much movement.  It started drizzling so our clue to get out and get food ordered for dinner.

Right before we ordered food it started to rain a good bit.  Enough so we scrambled around picking up all the electric tools feeling it wasn't safe.  They continued to work with the last boards they had to do, even in the rain.  Determination I tell you! We ordered the food and had a hard time getting the guys to stop.  They were so glad to sit down to a good meal and a cold beer.  Great food from Mason's Grill.  We love that place.

This morning I heard everyone moving around and I was hurting everywhere.  I stumble down the hall and get stares from everyone.  Brother in law asks about why I'm moving so slow.  I'm sure he was thinking, "uh, D and I should be moving like you"  I told him this is every morning.  For some reason after I'm in bed all night I have the toughest time to make my body move the first hours or so.  I told him ask me again after all my meds kick in.  He laughed.  Then D said, yeah. That's what I do, stand back until her meds kick in.  Unfortunately today was one of those days that the meds never kicked in.  The stimulator either.  I made myself go out after our family left to take care of getting gas, (we have a storm heading our way if you haven't heard) because I know the lines and the prices will grow over next few days.  I managed to get a few clothes washed but mostly resting trying to control this flare up.

D of course spent another day outside.  Some small areas around edge of the pool were still left.  The ladder had to be put together and installed.  I love it!  It hangs straight down so it doesn't interfere with swimming laps around the edge of pool.  He got in the pool a couple of times.  I would watch him and wanted to so bad but thought I couldn't drag it out of myself.  I did though.  I really wanted to try out the ladder and run the vacuum to make sure pool was clean.  Having a guest to tomorrow to visit.  A long time dear friend.  We'll swim and just lounge around.  Good day to do it because after tomorrow we may not see much sun for awhile.

Isaac seems to be heading our way.  Our Governor has declared state of emergency.  I watched Weather Channel most of the day while resting and doing laundry.  Just since we headed off to bed last night and checked in this morning changes had happened.  We're all praying this storm stays far east as it can.  I keep thinking, what do we need?  I can't think of anything.  There has to be something.  D agrees.  We're good.  He has gas for generator if needed and both automobiles are tanked up.  Wow, just something else for me to be anxious about.

Tuesday is my disability hearing.  Of course I'm wondering how the storm will effect this.  All the lower parish state offices have been closed for until farther notice.  If by Tuesday they close federal offices, there goes my hearing.  Seems a little selfish, but it's been a long wait and I'm clueless as to what will happen if delayed.  I just want it to be over, I'm so nervous about it.  

I'll check in tomorrow with my weight for the week and an update on what LA is up against with Isaac.  Lets pray it doesn't cause any more deaths than it already has.  Predicting to land near New Orleans around 7 Wednesday night.  The longer in the gulf the more things change.  I hope to get up and find that darn thing just made a turn for the east but this is unlikely.  

Gustav left us without electricity for two weeks.  The neighborhood we lived in at the time had plenty of old big trees with power lines every where.  Here everything is underground so we're hoping if we do loose power it won't be anything like the past.  

Be safe everyone and make sure if you are here where I am your prepared with everything you need.  Medicines, important documents.  If you are a sick or pain patient you want to check NOW that you have enough medications to last a week.  Food for a week and some bottled or gallon water.  I've just seen on the news that some stations in Baton Rouge ran out of gas today.  So glad I pushed myself to go out this morning when I really wasn't feeling up to it. 


Dallas loves the deck.

In for a swim

right before dark

today, installing ladder

nice and clean for my company tomorrow

He thinks this was built for him :-D

Wednesday, August 22, 2012

Oh What a Relief it is....

Since Saturday I've been counting down the days for today.  I had an appointment with Mr. R at 9 and I stopped for coffee on the way.  There was a gentleman there I had a conversation with and we somehow started talking about back pain and he was curious about my stimulator.  Oh, I told him.  You don't want to be a candidate for one of these because that means there is nothing left for them to do for you other than keep you on high doses of medication.  He said he was only in his 30's but starting to have trouble with his back.  His parents, aunts and uncles and even siblings have back trouble.  
"I'm sure I'll have it too", he said.  He mentioned a family member that never gets relief.  Uh huh, I understand.  He told me he often wonders what it must be like to never have the pain stop.  Well, I told him, you really couldn't know or understand.  The one way you could, I promise you don't want it to happen to you.  So I told him to imagine the next time he hurts himself, really hurts himself to the necessity of needing a pain reliever just think about the possibility of it continuing the rest of your life.
Enough about that.  Not a great conversation to have on my way to be reprogrammed.

Mr. R and I both were very, very late.  The interstate was shut down due to an accident and traffic was a night mare.  He text me first.  I don't know what's going on but I WILL be late.  I'm sorry.  No problem I told him.  I've been in my car 30 minutes and went 2 miles.  Seriously.  We were to meet at 9 and I made it there at 9:45 and he had just pulled up.  We went in our little secret room at the surgery center and got everything out and hooked up.  I had made him a list of all 11 programs and what was wrong with each.  None are covering?  He couldn't believe it.  Nor could he give me an answer.  Lovely had told me this would happen less and less as I got closer to 6 months and I wanted his take on it.  He said everyone is different.  I could have moved a lead just a hair in swimming and that's what caused it.  But maybe not.  Yes, at some point but he wouldn't promise 6 months it's less likely to happen but there is ALWAYS a chance of it happening.  

He said he has three kinds of patients he sees post surgery. 1)  The patient who never finds relief with the stimulator and starts not using it at all after many attempts of reprogramming. The decide to have it surgically removed. 2) The patient who tells everyone, it doesn't work. Don't do it.  I did and it doesn't help me.  It doesn't cover the area that hurts.  This patients calls a year later to complain and see Mr. R or the doctor and asked to have it removed.  They've never once called to ask Mr. R for help.  To try reprogramming.  Some patients don't get direct coverage but it still helps them to feel better by distracting the pain but obviously everyone wants it right where it hurts. 3) The patient like me, who will call Mr. R as many times as I need to to get it right.   This could be a few more times or a hundred more times.  That's his job and he always reminds me of that.  I still feel a little bad every time I text him I'm having trouble though.  

Today was successful.  We went ahead and dropped several that have never worked for me.  You see each time they reprogram they add new ones and tweak what you have.  They don't like to drop because at some point that program may be just right for you.  It takes quite a bit of time to create a new one.  It's not just a click on his machine.  There are many areas that he touches that have thousands of combinations of areas to create stimulation and when one changes that may mean the one you didn't like or feel in the right place you may now.  I asked him to drop some though because I was up to 11 and I'd have left with 16 and it takes a long time to go through each finding the one you need.  One particular one from day one only stimulated my right side so I saw no need to just leave it on there.  He explained if I drop it, all the numbers you have memorized will move up a number and you'll really be confused as to what program is what.  A chance I was willing to take.  Go for it.  We spent a little over an hour until I couldn't stand still any longer in one spot.  I had plenty to work with so I was happy and ready to go.  When I told him I had enough and was tired he said I can't let you leave with 13 it's an unlucky number.  Something I'm superstitious about.  It has to be 12 or 14.  So we got rid of another and I left with 12.  A few are duplicates of my favorites before I lost coverage last week.  If something changes again, those could be perfect again.  It's kind of crazy how it all works.  I just have to be patient and keep believing it will get better and better.   He said the fact I keep coming back tells him that it's helping and I will have good results in the end.

I made a few stops on the way home and decided to put off anything around here and get in the pool while the sun was shining.  Understand a chance of rain this afternoon.  I usually starting feeling an increase in pain after but the first program I turned on hit the spot.  Oh what a relief it is to have coverage back.  Yes, I'd love to just be pain free but this is my "pain free, pain reducer" and I'm happy to have it.

On a totally different note.  I wanted to share something with you I think is super cute.  If your a southern belle and went to college in the south you'll love this painting baby C's mom did.  It started as one for a family member in college and now she has everyone wanting one.  If you like it, I can hook you up.  lol

Monday, August 20, 2012

The Good and the Bad

So we'll start with the good.  142 Finally I move on the scale in addition to measurements.  This was a great Monday to see this.  I needed this encouragement to help me through this week. Total now 5.5  Last week I used more points than I've ever used and had birthday cake Sunday for my grand daughters birthday.  So I was a little nervous.  Obviously the birthday was the other good.  It was nice to have a visit with her.  I hadn't seen her in 6 weeks.

Her visit with us was quite fun, but the weather was not.  The drive to pick her up and return home was in terrible weather, going and coming.  When we made it back to my house she asked, "Nonna, can't you make this rain stop?"  She wanted to swim in the new pool.  The pool that was filling to the brim with rain water.  Constant from the time we got up in the morning to that evening.  At one point it did stop.  D checked the radar and figured here was our shot.  We suited up and got in.  She loved it.  A little scared at first but before we got out she was letting go of me and floating on the noodle.  Fifteen minutes at most and it started to shower again.  At first we just ignored because there was no thunder or lightening but it turned from a drizzle to hard shower and forced us out.

After that she was broken in and kept asking the rest of the evening/night and first thing when she opened her eyes Sunday morning.  Like a kid at Christmas.   Nonna, can I go swimming now?  When I told her it was raining I don't think she believed me she had to run to the door to see.  Such a sad face.  She quickly forgot as we talked about getting ready for family coming to celebrate her belated birthday.  We tried on some dresses and took some pictures.  Little stinker shocked me a time or two by surprising me with her tongue out.

On with the bad....You know how just last week I was bragging how I haven't had to call on Mr. R or Lovely in 3 weeks.  I guess I jinxed myself.  Saturday morning for no apparent reason at all I get up to find the program I had on the night before is really strange.  No coverage around my back at all and this tight rope feeling right above waist and right below bra area pulling very hard.  Well, no problem I was thinking.  You have 11, just move onto another.  This went on for 20 minutes until I was crying and my poor husband was surly thinking, "what now?".  Every one was the same.  I seriously have no idea what would make everyone change at the same time.  None of them are covering my back.  I'm so annoyed and discouraged.  I'm swearing by the stimulator now.  Without it, I truly know how much it is helping me.  

I'm texting right away to Mr. R and Lovely for help.  The only thing I can think of is a positive and a negative.  The positive-maybe some new scar tissue developing.  Just time to reprogram and this is a good thing.  The negative-maybe my swimming messed everything up?  I sure hope I didn't slip a lead out of place.  This would be terrible.  I always think of the terrible things.  You know, if I didn't know about them then I'd be more likely not to think of them.  But I do know and I'll have to wait until Wednesday to see Mr. R so I'm dealing with it the best I can.

The first way is Increasing the pain medicine.  This is depressing when you'd dropped down to such a low dose.  It  stops you up.  My body has to get used to it all over again and I just simply hate the way it makes me feel.  Lazy, lethargic.  Not to the point I could lay down and sleep of course.  Just enough to drain all my energy.  Secondly just excepting some stimulation somewhere else, (a few I can stand), to get me to Wednesday.  

The next bad was during the opening of presents I was standing behind Aubrey and wanted to get between her and P for a picture.  Somehow I lost my footing and feel back against the wall.  It couldn't just be against the FLAT wall.  I had to make it dramatic and fall right on the corner where the window starts.  That corner hit right on my left butt cheek.  I did everything just right, fall in the right place on the wall and on the right side of my body, which is the left.  lol.  If felt as though someone had slammed a hammer into my battery site.  I was beside myself with pain.  Thank goodness it subsided in a short amount of time. (the throbbing).  I'm wondering how long will this continue to be such a danger zone?  I would think at three months it wouldn't still be so tender.  Now back to square one.  I just got over it being sore or bruised from a month ago.  Last night was so uncomfortable between no stimulator and rolling over my bruised battery site.

Thank you Ms. Karen for the beautiful barbie cake.  I know A just loved it.  She was so amazed by the fact that a barbie was inside of her cake.  Here is proof in this picture.
Btw, don't loose her other half please.  LOL

The last bad is the deck had to be postponed with all the rain.  The back yard had just dried out about mid week and not it's all muddy again.  No deck building in that mess.  We'll try again next week.

I really need to start drinking.  I have a pool.  I could learn some delicious cocktails to lounge around and drink in the pool.  Guess that could be dangerous?  Not to good on WW's points either.  

God is good.  This week will get better.  My husband always hugs me and says, which side?  I think he should have it by now.  Another fellow blogger always closes Gentle hugs.  That's what I need again.  Gentle hugs.

I can't leave you without a picture of P trying to walk in Ms. K's high heel shoes.  That's my boy.....

Wednesday, August 15, 2012


It was not my intention to sit down and blog this morning.  I have a lot to do on this day.  Things that are fairly simple for most people.  Sometime it does take me a little longer to get going on certain days but for some reason I just can't seem to get moving this morning.  I have therapy at 2 with lots to do before so I must make it happen.  I've seem to woke up in a somber mood on top of the pain. 

I've spent many hours questioning myself on some important things, decisions in my life over the last year.  One being How did I end up with such a troubled child? I've said it out loud too many times, asked myself too many times.  Even through two therapist I'm still asking.  I want to be clear in that I don't just see them for worrying about my son, it's also to help me emotionally with the chronic pain I live with.  Two days ago I made that statement again, out loud to someone other than my therapist and decided I need to write instead of looking back at text trying to not dwell on this matter.  Maybe if I write it I'll believe it more and maybe I need to see it every day.  

I mean this with love-he has made some choices-when you say "end up"it puts all blame on you.  Please don't forget that sometimes he doesn't always make good decisions and that -my love, you have NO control over.

There it is, I wrote it. Now I have to believe it, live it.  And it stinks. My therapists says he's not the son I wanted and that it probably hard for me to except and live with too.  It will take time for me to let him be who he is and let him decide on his own to want  his life to be better.  That is something she has helped with so much.  I'm a why person and a let me fix it person.  I've always had trouble just sitting back and going with the flow.

Somedays go by I and I barely think about it.  Like when I'm with baby C.  She keeps me busy, takes my mind off of my pain both mental and physical. She reminds me of both of my grand children.  Happy babies, they were.  And still are I might add.  She really makes me laugh all day.  I don't know any other family, like this exceptional one, who would put so much trust in someone they knew so much truth about. 

We've both been great for each other.  They have given me back a feeling of worth in this life.  To be needed for such a important role in their lives.  Not a day goes by, and I'm completely serious that they don't thank me multiple times in a day for doing things anyone would do.  They appreciate me to a degree that is so uplifting.  They ask very little of me besides their child being # one priority.  That's the way I work, but the few small tasks I do when she is sleeping, once their done,  I rest.  Who understands that, and not to mention INSISTS that I do.  Lets just end this subject with how grateful I am that they connected with me and liked me and gave me a chance.  Our feelings are mutual. <3

Another of those second questions I pondered over for months, even before I lost my job was filing for disability.  Am I disabled?  I don't want to be disabled.  I had a great job, a job I loved.  Working through pain seemed a much better choice than giving up and leaving it up to a judge to decided if I'm disabled then totally turn our life upside down finances and all.  But life happens.  I lost my dad, my job, found out I had melanoma and I gave up the fight. (all in 3 weeks)  Then when family starting asking, "why don't you file for disability?" I started thinking about it.  I continued to look for a job but filed anyway.  That was in June.  I was turned down in October, then made the decision to hire attorney and continue on with the disability case.  Wow, can't believe I'm sharing this with everyone.  I was making a nice salary at my job.  Who would want to give that up?  Why would I want to get a disability check and do nothing but think about wanting to be out there in the world doing something productive and being around other people, helping other people.  That's a lot of what my job was about.

Move 11 months later, and my hearing is in two weeks. I know the answer to these questions.  It took me a long time to get there.  Many times I just wanted to say forget it.  I'll start over and now with the stimulator I'll somehow make it.  You see I'm one of those people who are scared of being judged.  I worried about what people would think.  I really don't care any longer.  I know what I've been through and now know what it will take to recover.  Time off.  Time off from pushing my self through a stress full job.  Time off from sitting in one chair 10 hours a day.  I can barely sit 30 minutes.  Time off from dead lines and mean people who don't appreciate you.  They money isn't worth it.  My life and my family are.  Sure there are some hours in the day that I convince my self that I could go back to work and make it.  It can be as little as an hour later and I'm headed for the couch or bed.  A flare up can come on that fast.  I don't necessarily have to do anything to cause it to happen.  I could never get a job making what I was making.  I can't get from the floor without assistance.  If not a human, a chair or what ever is near.  I feel trapped in the body of a 90 year old.  I can't stand on my feet in one spot for any long amount of time.  Have your read the classifieds lately?  Over and over I see, must be able to bend, stoop, lift at least 30 pounds and stand on their feet long hours.  Not me, I can't do that.  I guess that has to be stated ahead of time these days.  I don't remember years ago seeing that in a classified ad for a job. 

My point is, I've excepted it for NOW.  Who knows if I'll even win or not.  If I do, I'll give the stimulator more time to do it's job.  Hopefully it will get even better.  Theres a chance I am where I am and that's what I get.  But there is also good chance that reaching 6 months they'll be more improvement.  Meanwhile, I believe in myself and believe that I should be awarded disability until I can go back to work.  This is my long term goal.  I don't want to be "disabled" as my title.  I think retired sounds better :-D  There is a program that you can enroll in if awarded benefits to go back into the work field part time with out losing your benefits.  It gives you an opportunity to see if you can do the job or not.  It's all about quality of life right now.  If being labeled disabled lets me have a better quality of life where I feel like I can do what I need to do when I need to do it to feel better and not be a miserable person then I can live with it.

Pain free is where I want to be......

Tuesday, August 14, 2012

Weigh in :-/ week 5

This picture is starting to get old I'm sure.  Been the same for last few weeks.  I'm stuck on that weight. UGH.....There is a little encouragement still.  Another inch off waist and 1/2 of hips.  Still bugs me why the numbers won't move.  I'll keep hanging in there and keep on trying on clothes I'm getting into.  That also makes me keep going.

The new medication my new psychologist started me on is Viibryd.  It is for depression but also for anxiety which is just as big a deal for me than the depression.  We did 10 mg for a week now up to 20.  A few side effects but they are slowly getting better.  She asked me to do a genetic test that shows what medications will work best for you.  Turns out my results said Viibryd is great for me.  Some of the others I've taken in the past that didn't work, we now see why.  It showed on test.  I think every insurance co should cover that so patients don't have to go through 4-5 medications before they find the one that works for them.  Hopefully, this one will continue to work for me and I can stop switching.  I have a pharmacy in my medicine cabinet.  This genetic testing also shows if the medication will cause you to gain weight or not and the Viibryd does not.  I'm beginning to wonder?

Got in the pool again yesterday.  I really have to control myself with this swimming.  I feel so good in the water I think I'm Wonder Woman.  I decided to swim laps for 30 minutes because that is how long I walk for so I could compare the activity points you get for lap swimming.  On WW's online they list every activity you could think of to give yourself credit for burning calories.  Anyway I wore out at 25 minutes. Couldn't squeeze another 5 minutes.  That was 32 laps.  A lap being across and back =1.
30 minutes out of the pool and I was crying.  I guess I need to slow it down and keep to stretching and some brisk walking and build up to the lap swimming.  It just feels so good to do something without hurting, but it comes after so I'm not doing myself much good.

Busy week ahead.  I'll be watching baby C Thursday and Friday.  Saturday we'll have family helping my husband with the building of the deck.  Sunday we'll have a small gathering for A.  Her birthday was Monday.  3 years old now :-D  Hopefully I'll get a post in somewhere.  I'll just have to see how it goes.  

Have a great week.  Pain free is my prayer for everyone.

Poppa and P

Sunday, August 12, 2012

Finally in the pool :D

A friend of mine told me about this refreshing flavored water.  Its called ICE.  Found at your local Wal Mart.  I'm not a fan of flavored water but it's carbonated and comes in great flavors.  When your tired of water or having that special snack that you like something carbonated with this is a great choice.  Zero's all the way down the nutrition facts.  Even sodium.  Most diet drinks have a lot of sodium.  Just thought I'd pass it along.  The orange is my favorite.  It taste like diet sunkist to me, which I love so this is a better choice.  I do think they are pricy.  $1 a bottle.  I just keep a few a week in the fridge for when I'm wanting something special.

A few days ago I tried making zucchini chips.  It was a small zucchini and I sliced it quarter size slices as recipe recommended.  They were so small the turned out like little burnt zucchini crisps.  I still ate them.  I liked them crispy!
Today I gave it another try with a larger zucchini and cut some thicker so D could enjoy some.  I don't like soft mushy foods so I new I wouldn't like them to thick because the would be soggy.  This way didn't go well either because the thin ones obviously were crispy before thicker ones were done.  So next time I'll make a batch for me and D his own.  Very tasty and of course the most important think 0 points!

Not much else going on this week end around here but pool work.  My husband worked his butt off all week end, including Friday that he took off, trying to start getting our yard back in order.  It's a slow process.  He did a lot but it was hard labor and you couldn't really tell from looking out there.  His doing his best to get what he can done while the rain is away.  We're planning to do the deck Saturday so there is much to be done before they start. We did take time twice yesterday to get in the pool and enjoy.  

Our second time in my grandson was here.  P had a great time in the pool with Nonna and Poppa.  He laughed and played with us.  Kept us entertained the entire time.  

I overdid it and felt it this morning.  Obviously I have more mobility in the pool so after swimming some laps I did a lot of stretching that they did with me in aquatic therapy.  I woke up this morning barely able to move.  Everything sore and hurting.  I managed to push my self to go walk to get some blood flowing in my back thinking it would help.  My pace was slow and after a mile I had to quit.  I pushed myself to get that out.  I got back in the pool today but just to relax and enjoy and walk around laps.  No swimming laps or stretching.  One day at a time.  D definitely enjoyed when he would take a break to be able to get in pool and cool off.  

Weigh in tomorrow.  Anxious to see the scale.  Not sure if any more pounds came off but I wore something this week end that I haven't been able to wear so at least things are moving around.  That keeps me going.  Check in tomorrow.  Peace everyone.

Our pretty green grass before starting

getting started

Step one

step 2

base down, then rain delay

walls going up

liner installation 

starting to fill

outside view

one hour late barely covering bottom

big water bill!  It's full yeah!
My hard working man <3

the nerd swimmer, lol

Saturday, August 11, 2012

3 months

It's now been three months since my SCS surgery.  On a previous post I mentioned news I had received from St. Jude regarding my charging system.  Of course I called Mr. R the next day looking for some answers.  As usual he got right back with me with a number to call at St. Jude to address this situation in particular.  In the end every thing is fine.  These patients who have been burned were not following proper instructions when charging.  To be honest, I'm one of them.  There is a padded cover that goes over the wand that I was not using.  I wasn't having any pain or burns but I did have added warmth in the battery area.  Never to the point that it worried me.  Having this warmth is normal, I had read about it and remembered it from watching the video provided with the charging kit.  So I didn't think anything of it.  That is until I got this letter.

In my phone call I had my fear answered.  This problem has nothing to do with the battery itself.  It is completely about the charging system.  They are working on making some changes in it to reduce chances of it happening to patients but they wanted to stress verbally on the phone with you to follow the instructions exactly as they recommend.  One thing that saved me was that I charge on a weekly basis.  Some patients experiencing problems were waiting longer periods of time, not using the pad over the wand or placing the wand directly over the battery area.  They explained to me how important it is that the wand be placed exactly over the battery before letting it charge.  It can cause it to generate more heat I guess if it is not in the correct spot.  So I myself am feeling much better about the entire deal.  Even if something was wrong, which there is not, it would only mean I needed to replace the charger not to remove my battery.  That was my biggest concern and I didn't want to even think about it.  I also learned something new I didn't know about the pad being over the wand.  It has a clip attached to back side so you can hang on a belt they provide for if you want to be mobile while charging.  I thought that was the sole purpose of the pad for the wand.  So from here on out I'll be using it properly.  

The call was very explanatory.  It was recorded and she repeated the instructions multiple times, asking did I fully understand how to properly charge my regarding placement and using the pad?  Even as we went to hang up she said again I'm required to tell you once more to make sure you understand and she repeated again.  It was very pleasant though.  Not as if to make me feel stupid, but for my safety.  I'm sure this has been a big deal for them and their reputation.  So this is one thing I'm no longer worried about.

So what's different at 3 months.  First, I'm noticing I need reprogramming less often now.  It's been 3 weeks and everything seems the same as since Lovely fine turned some programs for me.  The closer I get to 6 months they will stay and be more in just the back area where I need.  Right now I still have to deal with feeling the stimulation in areas I don't need.  It's ok though, better than no stimulation in my lower back at all.  I will however be happy when we can get it to just that area.  In the first few weeks we couldn't even reach close to the spot that hurst the most.   

Second, taking less pain medication.  Some days I need more depending on what I do.  As I mentioned in a previous post with the taking the pain med, giving it an hour to work, with the stimulation added I can now walk and ride my recumbent bike.  Before surgery, I could barely keep up with D to walk Dallas.   This really helps me with the depression to some degree.  I was gaining so much weight not being able to exercise and just not feeling strong enough to do anything.  

Third, I'm sleeping a little better.  Leaving the stimulator on at night on low seems to help me relax a little these past weeks and release some tension in my back.  I still wake up every time I move because the battery site is still pretty sore.  I've asked about that and it could still take a few more months before that is better.  I'm expecting some great improvements by 6 months and still feel pretty confidant that I made the right choice.  I still have some days that even with both I just can't seem to do various things.  There are more better days than bad I'd say.   Every day seemed to be a bad day before.   The weather still effects me a lot.  No matter what I take or how high I put the stimulator that just can't seem to be controlled.  

I could have been a patient who got no relief from the trial at all.  Even though mine didn't go well, if your considering doing the trial ask your doctor about trying longer than 3 days.  That just isn't long enough to really tell how well it will work for you.  We were all skeptical going in ( Mr. R, my doctor and myself) but I knew it couldn't be any worse.  And praise God it isn't.  I'm happy to say it's better and I hope it will continue to be even better than it is now. 

It's been a nasty week with getting the pool up.  I'm happy to say it's done and left our yard like a mud pit.  All part of it I hear.  If the rain would have stayed away we'd only be dealing with a pile of dirt and some dead grass.  This is bad.  It actually stinks around the worst areas.  D is working his hardest to get some sand spread to soak up the water.  He can't really do any work with all the water and mud in the way.  The long down pour we had last night just really put it over top.  In all matters, even the pool.  New pool owners, we had to call someone to find out how to drain some water out, we didn't even know.  D has been in.  I haven't.  At the present time we don't have a ladder. He's worried if he can get me in, how will he get me out.  Guess I'll have to build a lift he told me. 

It's on a truck on its way to Baton Rouge.  We've been promised if it comes in today they'll bring it to us.  I can't tell you how much I can't wait to get in.  When I'm in the water, I feel so much relief.  I think I'll live in the thing! Tomorrow I'll post some pictures.  The deck is supposed to go up on Saturday but that will all depend on the weather also.  With the condition it is out there now you can't really work.

I hope to have time to post tomorrow but if I don't you know you'll hear from me on Weigh in Monday!

God Bless and enjoy your week end and love those babies.  Speaking of babies.  My first grandchild turns three on Monday.  My how time flies. 

Tuesday, August 7, 2012

Worry, Worry go away....

Last evening UPS stopped in front of our home.  D and I both looked at each other.  You expecting a package?  It's usually D.  He orders a lot from internet.  Many times if there is something that he normally buys anyway and it is linked to some sort of charity deal he always buys it that way.  Usually a bulk amount too.  It was an envelope that had to be signed for.  Why does that scare you when that happens?  Because you don't know what it is about.  D looked my way, it's for you.  Ugh, what is it?  Start opening, and it's a letter from St. Jude with a supplement on information for directions in the product labeling regarding my IPG.  (implantable programmable generator)   See why I say IPG?

The letter contained recommendations for charging because there have been patient complaints of warmth or heating at the implant site.  St. Jude has informed my doctor that a number of cases have been reported in which discomfort associated with heating occurred at the devise site while patients were using the Charging System to charge their spinal cord stimulator.  In three cases, patients received a burn to the skin ( one second-degree and two first-degree burns) at the implant site.  This only applies to certain models and their records indicate that I have one of these charging systems.  (oh goodie, something else for me to worry about)

I've been telling D for the last ten days that every since I bumped it pretty hard it's been darn uncomfortable.  Almost like back at beginning healing.  I've been avoiding lying on back or that side.  His determination was that maybe it broke through some scar tissue and is re-healing.   IDK but the slightest pressure and it's so sore.  He playfully tapped me there a couple of days ago and immediately said, "oops I'm sorry it's that the side"  Yes, it is and you better remember which one please.   The last 5-6 days I've been getting these zaps in the IPG site area.  Like a zinger.  Best I can explain.  Have you ever whitened your teeth and get these little shocks?  A lot like that, but a little different.

I know the two have nothing to do with each other but I have already been nervous about that.  I'm also wondering why my doctor after receiving the letter didn't check with me about this matter.  I guess, if it ain't broke, don't fix it is his attitude.  I'm not complaining, so I'm fine.  The physicians received letters months before patients went out.

 St. Jude reports they have received 325 total patient complaints of warmth or heating at the device implant site during charging for the Eon and Eon Mini spinal cord stimulations systems, which equates to 0.46% of total implants as of June 30,2012.  Some physicians or patients have requested explant surgery to address uncomfortable temperature elevations.  These reports resulted in a total of 72 explants for the Eon and Eon Mini spinal cord stimulators, or a rate of 0.10% of total implants. 

They are at present time implementing design improvements to the charger to address possible increased heating when the spinal cord stimulator and charger are misaligned or the SCS is located too near the surface of the skin.  Then they give a list of recommendations that I already follow.  I said to my husband right off the bat that I wondered if some of the patients are waiting to long to charge.  I charge every week.  Even the same night of week to keep it simple.  The IPG will stay charged up to month at a time.  If you do this, you better be able to sit still for some time to charge. Something I can't do.  It will most likely take hours, possibly up to 4.  Mine usually takes approximately 40-45 minutes.  The one time I went over by accident and it was almost two weeks it took hour and 10 minutes.  I did feel as though my skin was warm but depending on what your wearing sometime you have to put next to skin because it will not make contact through thick clothing.  

I know I shouldn't worry about this.  Quite honestly I was already worried about this other issue I was having. I was waiting to see if it just went away.  As far as this new information  I want to believe since no trouble now, that I most likely will not.  The thought of having to have an explant surgery just makes me sick to my gut.  What then?  Would I try another?  To many things for my worried little brain to think about.  Have no fear, of course I've already text Mr. R to ask questions.  He text me back a phone no to contact St. Jude with any questions regarding this issue.  I'll probably call tomorrow.

One day of work on the pool yesterday.  They got a lot done but after leaving late yesterday evening, it came a hard rain.  It's a big mess out there.  No work being done today because of that.  We've had to be patient all last week so this doesn't surprise us.  We knew if it ran into this week we'd be working around rain.  I hope I get to spend some good amount of time before it gets to cold in it because it is so relieving to my back pain.  D is looking into a solar heater.  A lot more reasonable than a gas or electric, which I would be terrified of.  It would give us another month or two longer to use pool.  I understand a liner is next after level then a load of sand is put down before they start putting everything together. ( I could have that backwards )