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.

Saturday, June 30, 2012

Opening the door

During my visit with my therapist last week she was thrilled to hear I had a visitor.  She's been encouraging me to either go out with some friends or to let them in.  I assume your wondering why on earth I wouldn't want to spend time with my friends.  I try hard not to complain about my pain but it somehow makes its way into a conversation.  A reason why I say no to something or an excuse not to participate in social gatherings.  It's really been hard for my husband because as little as 3 years ago we were having regular dates with friends, taking dance classes and even exercising together.  Now, he has a monthly date with friends for fine dining.  

D has always enjoyed going out to eat.  I can take it or leave it.  Even before the chronic pain was present I was just to frugal to spend money on eating out.  After I gave in to this nasty demon (pain) I not only said no to going out with my husband I also stopped saying yes to my friends.  My therapist wanted to know why.  I explained to her that I had multiple reasons.

  1. Girls night out don't happen to often so we have a lot to say.  Sitting for that long of time is just out of the question for me.
  2. When I have to get up, I seem to spoil it for everyone.  They just seem to follow behind me and I feel as though I break up the "party"
  3. The past few years I felt as though I had nothing anyone wanted hear.  I let fear make me feel as though I couldn't just say there are some things I don't want to talk about and some things I can't stop complaining about.  Until I started therapy I just preferred to be alone and not give my friends a chance to come in.
  4. I still do not have an accurate diagnosis like many others who hurt every day so I didn't want to answer the question, "How are you?"  I felt as though they would think I was crazy since all the many doctors I've seen cannot tell me whats really wrong.
Yesterday I had a another friend come to visit.  I picked up the phone and called her and asked her to come when she was free. (she has asked multiple times since surgery)  I should have set some rules for her.  She always shows up bearing gifts.
A "house warming" she called it!  And then something good to eat.  Fresh cherries.  Something we love in common.  Yum, Yum.  We had a great visit and caught up where we left off.  She has passed me up in grandchildren.  She has now has 3 and I have 2.  We shared pictures and talked non stop to try and get it all in.  I told her as she left it was so good to laugh and visit with her.  I guess I'll get an A+ in therapy again next week. lol

Point being that she (therapist) is right.  I need to stop letting my pain run my life.  I am me, not the chronic pain.  I have to remember that I'm still the person they know and love.  Nothing about that in me has changed.  Just the pain.  I have to control it, not it controlling me.  Continuing to exercise through the pain is part of that.  The less I get out the more I hurt.  That is for certain.  Another way I let it control me is because it is just to easy to say its to hard today. I can't do it. There was a time when many of my friends and co workers would tell me they wish they were as disciplined as I was about my eating habits and exercising.  I would think inside you have no idea.  You can do it, I do it hurting every day.  But over time I became just like them.  Believing I couldn't do it.

So from now on instead of just saying I'm fine, or being honest and complain.  Thats the two answers I give.  I am taking the advise of two wise people.  A fellow bloggers guest post in "Ways to help your loved ones cope with your Illness".  When speaking to family and friends instead of giving a long list of complaints, just tell them if it's a "good day" or a "bad day".  We may have to elaborate on what a bad day means for us initially but from then on thats all that needs to be said.  My therapist recommends the same in so many words.  She said that it just needs to be defined as one of those things I don''t care to talk about in detail.  It can make me sad, bring out tears and it can also lead me into a long complaining session and depression.   I know most of you really don't want to hear that anyway.

I've proud of my accomplishments as far as exercise this week.  To understand that pride you'd have to have an idea of my exercising habits in the past and the level of my pain.  Sunday I rode my recumbent bike, Tuesday walked with a friend, Wednesday I exercised in the pool, last evening I really had to take a night off.  My pain was getting off the charts and if I let it get to bad it takes days to get it in control again.  Tonight I rode the bike again.  Tomorrow morning I am lucky to get to get back in the pool again.  I believe of all the things I did, it hurt the most after but in the end helped the most.  If I can keep us this pace I'm happy with this level for now.  

I'm starting to realize how important spending time with my friends and my spouse/family is.  My life has changed so much and I've been grieving over that,and my uncertain future. Now I understand that they have lost their friend/partner too.  They deserve more than to just let me go.  If they accept me they way I am then I can too.  I've been goal setting for myself this week.  Most of them are about stopping this nasty demon from controlling my life.  I have faith it will help.  I'm accepting who I am now and trying to love the new me even if its not who I imagined myself to be at this time in my life.  Good day or bad day. I am asking myself what purpose can I use this pain for in a good way.  I think starting this blog was the first start.
The housewarming gift <3
The yummy cherries
My crazy dog Dallas, he sleeps the funniest ways.
He always manages to hang his head off of the side. 

Thursday, June 28, 2012

6 weeks today

I can't believe 6 weeks have crawled by already.  I'm feeling like I'm back at week 2 today.  Starting the exercise is kicking my butt literality.  Recumbent bike, 30 minute walk, a day of rest and today an hour in the pool.  I felt great in the pool but then it came time to get out.  I'm praying all this break through pain I'm experiencing is just my body screaming back at me because its been life less for sometime now.  It's very unhappy with the new movements going on.  I told my daughter if I could just live in the pool, life would be grand.  It almost disappears when I emerge myself in the water.  I think tomorrow will have to be another off day because here it is almost 1am and the pain isn't letting up, so sleep seems out of the question.  

If your reading this and you suffer from chronic pain for any reason I came across an excellent blog today.  I'm sure he'd be thrilled that I share his site through mine.  After all, we're all here for one another. I only read 3 post but they were so encouraging and well written that I must share.  I'll take all the encouragement I can get.
Peter Waite at HealingWell Blog - 

More painting today.  Reading blogs and I spent the afternoon with a handsome, not quite 3 yet, happy little boy.  He had a good time with Nonna in the pool.  He had a "house" built in his living room.  A blanket held up with some chairs.  A pillow and blanket inside.  Everything dear to an almost 3 year old.  P wanted Nonna to come in his house.  That is what breaks my heart, simple little things like that, getting down on the ground to make my grandson happy. 
He like Nonna's cookie though.  Maybe that made up for it though.  Thank goodness we had so much fun in the pool that he forgot Nonna couldn't make it into "his house".  He even helped me exercise my holding onto my foot while I back stroked around the pool.  (work those arm muscles)  They survived.  But my back muscles are really p____d off right now.  I have to believe it's a good hurt.  I hate that term, its so silly sounding.  What's good about hurting?

As instructed by my therapist,  I'm following her homework of having a friend over each week. Tomorrow my dear friend is coming who hasn't even seen my home yet. (we moved in Oct 11)  She's been asking to come but I've been fighting the blues and liking being safe here alone not having to talk about anything that I'm unhappy about right now.  That has to end.  It's time to get back out there and open my self up to trying to keep on managing day to day life with this nasty pain.  

It's been 6 weeks, but what I really can't wait for is 6 months.  Thats the time span that's supposed to really make a difference.  I put in a request to Mr. R for us to meet next Tuesday.  I didn't hear back yet, but know I will.  I'm down to one program working so I need some fine tuning.  Time to shut this lap top down and at least try to go to sleep.  Such an important part of caring for out bodies.  

Monday, June 25, 2012

Being active

Saturday and Sunday drug along and I wasn't looking forward to Monday.  The week seems to just drag by so slowly.  If I could do more, I'm sure that wouldn't be the case.  I did finish the project I mentioned previously.  I need to find a place to hang it.

 D had been asking me about trying to see a the theater.  I haven't been since March of 09 and before that I couldn't tell you when. When we were still dating.  It was a good test.  90 minute movie so a good choice as far as time.  I was squirming around at 45.  I had brought my stimulator so at that point I just cranked it up higher.  I made it, but couldn't tell you how happy I was to stand up when it was over.  I'd say I couldn't have done it without the stimulator. 

I had plans to get started walking again on Sunday but my partner couldn't make it.  I've been close to a couch potato the last 5 weeks so I was not going to skip since she couldn't make it.  So skip the walk and ride your recumbent bike.  I figured I needed to try at some point.  It wasn't to bad.  No resistance and 30 minutes.  I only burned 100 calories.  100 more than if I hadn't done any thing!  I was concerned that the way my legs would move peddling  it would bother my battery site.  That was not the case durning but it was after.  I experience some light throbbing there and mild discomfort in the area of the little knot on the incision along my spine.  It did feel good mentally.  I convinced myself that even if I didn't just have surgery I'd be a little uncomfortable just getting started again.  I had to believe that instead of starting my usual worrying. 

Today I decided it was ok to bake some more cookies because I was a good girl and I exercised and I planned on walking this evening.   Problem was where my baking pans are.  Where my bowls are.  Nothing is where I can "follow instructions" and bake cookies or wash clothes for that matter.  Wednesday is 6 weeks so close enough.  Have to start bending a little sometime.  Two days early, big deal.  I got 5 loads of clothes washed and folded.  Doesn't sound like much but I haven't been unloading the machine, only starting it and D gets out of machine and into the dryer for me.  I did use my grabber to get out of the dryer so I wasn't completely being bad.  I managed to get the pans by knelling down and lucky me I could feel the ones I needed.  I washed and left for D to put back for me.  Taking the cookies out of the oven was a little tricky also.  Now I have all the cookies here, again!  I'm bringing some to my therapist tomorrow.  So glad I have a few places to go tomorrow, the day won't be so long.

My walking partner made it today.  Apparently during our conversation during our walk she is new to exercising.  I just thought she was getting back to exercising but that doesn't seem to be the case.  We both had reason to keep it simple and stick to 30 minutes.  There was no way I was going to back out but honestly between riding the bike last night, the baking and washing clothes had really pushed my limits. I woke up hurting a little more than usual but tired to convince myself that I was supposed to feel that way.  Nothing wrong. 

 It was quite warm but its a wonderful place to walk.  We have sidewalks in our neighborhood but there are a couple of broken and cracked spots that always make me nervous.  Then you never know when an unleashed dog will come tailing along.  Anyway back to the walking track, its great.  I wouldn't have a problem going there alone.  I was the first person to arrive at 6.  M was right behind me.  We started slowly and were the only ones until 10 to 15 minutes later.  By the time we left there were 10-12 people there.  We had some interesting conversation.  She knew I'd just recently had a surgery again but asked me at some point exactly what was done.  It was kinda of funny trying to explain to her what a SCS is and how it works.  I enjoyed her company.  We have a lot of miles to cover and learn about each other. 

I'm charging IPG while I write this and I'm currently at 45 minutes.  I'm sticking with once a weeks so I don't have to sit so long during charging.  I'm leaving it on more and more so it seems to take a bit longer each time.  No worries, its nothing hard.  You just have to pick the "right" time to do it.  Speaking of charging, when I went to turn off my programmer I somehow landed in the menu screen and when I finally got out the screen was blank.  It lit up green like it is supposed to but you couldn't see any writing.  I went to the manuel to trouble shooting....nothing.  They only mentioned for a blank screen if batteries are dead.  D wanted me to take them out and put back thinking that might reset it and it would come on.  I did, nothing.  There have been times that I've thought I could just get tired of the way the constant stimulation felt.  It can be annoying at some point.  But now in this situation after only 30 minutes I was panicking about what to do.  I should have known I could count on Mr. R to help me out.  I text him as to what was going on and he responded to me shortly after that he'd give me a call soon and we'd figure it out.

It was tough, it was like trying to do something blind.  You couldn't see what screen you were in or what was happening with each beeping sound.  Mr. R hung in with me until we figured it out.  He had a programmer on his end and once he figured out by the sounds mine was making he could understand what screen it was in.  Turns out the contrast had been tuned off somehow.  It was strange, because on his even turned all the way down you could still see the writing on screen, it was just dimmer.  But on mine it was blank.  I'm so thrilled I have a rep that is patient and so quick to get back with me anytime I need help or have a question.  I told him we need to meet soon and he said anytime, just let him know. 
Of course, I was fussing and complaining until he called me because I couldn't figure it out.  D has so much more patience than me.  Sometime he's so calm it makes me mad that he is so calm.  lol  It all worked out though.  

So I'm finished charging.  Good to go for another week.  Forgot to mention about getting a lilly for the pond on Sunday.  A movie on Saturday, and pond plant shopping on Sunday.  I'm really getting out in the world.  :-)  I have to say, I like it.  It will help keep it clean along with some cleaner we purchased for the pond and fountain.  We had to get some food for the lilly that it gets once a month.  Something else to put on the calendar.  Hope tomorrow won't be to rough.  I feel my body reacting to the extra stress from activities yesterday and today.  Hives are popping out here and there.  What's new?
Thanks for stopping by.  

Yummy cookies.  Oatmeal, cranberry, chocolate walnut. 

The pond Lilly

Saturday, June 23, 2012

A commitment is made

1000 Page view mark today! Thank you for your support :-)

I believe the last I saw on the clock was 2am.  Regardless I had set my alarm for 8 am.  I would not allow my self to put off going to the store one more day.  Hives, back hurting or whatever my excuse could be, I've worked under worse circumstances so suck it up honey.

I only hit snooze once and rolled out.  Had some yogurt and hit the shower. A hot shower feels so good on my back,  but a hot shower aggravates the hives.  Double edge sword.  I took the hot shower.  The past 24 hours has been the worst my back has been since surgery.  Trying not to worry what's up.  My therapist, wouldn't believe me.

I stopped by CC's for some coffee since I was out.  Can't tell you the last time I've been by there.  A whole wheat bagel was delicious too.  Then to $ General to pick up some seeds for my lovely birds in the back yard.  The more I feed the more that come.  I could just sit back there all evening and watch and listen.  Something we all need to make more time for.  

Entering Wal Mart started off on a bad foot.  You know how some times the carts just won't pull apart?  That was the luck I was having.  Three different rows of them and I couldn't get one off.  Knowing with each tug I was doing a no no.  What's a girl to do?  I ended up lucking out while trying to find an associate to help I stumbled across an empty buggy so I snatched it up.  I quickly discovered why it was a loner.  It had a mind of its own.  It went the way it wanted to go.  After adding two packages of bottled water and a 12 pack of Diet Sunkist and I already felt the lead in my back.  Tough, D can't take me to the store forever.  I'm not bending over, or twisting or lifting more than 5 pounds, I'm fine!  Why does it hurt though?

Moving along I see someone coming towards me that has a familiar face.  Where do I know her from?  Oh yeah, a patient at the office I worked at.  A teacher, God bless her.  She made eye contact and pointed her finger at me.  Don't tell me, tick tock, tick tock, I know at the Dental office.  "Did you now why I left she asked me?"  "Did you know I don't work there any longer?" I asked her.  We laughed.  Our catching up turned into 20 minutes or so but in the back of my mind I thought even though my back is screaming at me, I'm enjoying our conversation so tough it out. 

We discovered we lived not to far apart and I asked the teacher if she'd like to have a walking partner.  I don't know what possessed me to ask her that but I really needed a push to get going then you can't stop me.  Turns out she needed the same.  Please say you mean it, she told me.  I need some pushing and encouraging.  She warned me she'd have to start slow.  No problem I told her I have to do the same.  We decided on a great meeting spot right in the middle for the two of us.  There is a nice walking track at the middle school on the corner of a major intersection between us.   Every time I pass there I say I should be one of those people out there walking.  Now I will be.  We even set a date to start so I'm proud of both of us.  Sunday evening.  Now that I've told you I really feel committed.  

My daughter had mentioned the night before that her and the sister in law were taking the "cousins" to the zoo Friday afternoon.  I wanna go, I told her.  Meaning it, but not meaning it.  More like a wish than thinking I could actually make it.  When she told me I was welcome to come along they had room I felt excited about getting out.  I've had this fear hanging over my head of not being able to do certain things.  I did tell her I'd confirm in the morning after seeing how much sleep I get and what the hives look like in the am.  I honestly didn't think I'd be able to do it by the time I was home from Wal Mart I was so discouraged by how much my back was hurting.  B told me, "a lot of walking mom, you sure your up for it?"  No I wasn't the least bit sure but I wanted to go bad enough to suffer through it.  I've taken very little pain medicine recently so after having a sandwich I took one and within an hour I felt so much relief.  I turned my stimulator up a notch and it really did the trick.

We had a great time.  It was a little hot, ok very hot.  Hot enough to feel the sweat rolling down our backs.  The cousins had fun.  P ran straight to the tiger lying down in his cage and made the roaring sound a tiger makes.  Then we made it to the monkeys and when the came swinging our way it startled him.  He took off for mommy screaming.  It was sort of funny.  In a cute way, not mean.  His mom did a great job explaining how the monkeys could not get out of their home and they were just saying "hello" to us.  He was ok with that and ready to move on and see some more.  

I'm so glad I decided to go.  I changed my mind multiple times.  I've missed out on so much because my back was deciding for me what I would do. I'm glad I had an option to take control and go.  Quite a bit of walking for me but it was good kind of pain.  Didn't feel good but I know it was.  It was cute when P wanted me to push him and hold his hand.  It felt good not to miss out on something and to be a part of it.  It was worth it for sure.  I'd love to take the two of mine together.  We had to cut it short because they were rounding people up at 5 to get out of the zoo.  We thought we had until 6.  They don't fool around.  He rolled right up to us on his little golf cart and said, "you have to go, we're closing"  Ok sir, we'll head that way.  It was really ok, I think we were all ready to go anyway.  

So in conclusion, it was a great day.  Spent some quality time with my daughter and grandson.  Got to see P's cousin and Aunt C who I haven't seen since October.  I made a plan to take action on getting back to exercising, even it its a slow start.  We'll motivate each other along the way. I learned something from her today.  She inspired me with some things she said.  Maybe we were meant to connect.  

Have a great week end everyone.  Take it easy and enjoy your family.  I'm definitely going to take it easy tomorrow.  

Thursday, June 21, 2012

Roller Coaster Ride!

Love it.....
That's me! Anxiety girl. Can't wait to show my therapist. I may paint and hang in my room. Lol. Thank you special person for making me laugh when I desperately needed to.

Monday night the mean ol hives decided I didn't need to sleep and started their appearance. They hung around all Tuesday to spoil my day. Thankfully they said goodbye late that night and Wednesday was a great day.

I started a fun ride up the coaster and had a long time friend come by for lunch and we picked up right where we left off months ago and caught up. Girls can do a lot of talking in 3 hours. She was even brave enough to come out onto the back patio and see the rock garden. I say brave because one of the fun memories I have of this friend is her fear of lizards. ( there are plenty on my patio ). No secret now who I'm talking about.  I'm glad I let you in, lol.  Wouldn't have wanted a lizard to get you :-)
She, by the way was the inspiration for my post title tonight.

After, I was still feeling ok, so I turned up the stimulation and went for a short drive to visit a special little family that has a piece of my heart. We have a special bond that can't be explained but our lives connected in perfect timing for each other. They think they need me, and I know I need them. I'm sure God put us in touch for a reason.  I was there for around 2 hours and returned home. Caught D up on my exciting day and he was thrilled at my smiles and enthusiasm of looking to the future. Something I've been so anxious about.

About an hour before bedtime I start feeling that sensation of the mean ol pests picking on me. It's been 3 years and I know for sure when it's coming on. Kind of like what people have described to me when they feel a cold sore starting. Sure enough during the night they start burning and itching keeping me awake. By 8 I'm up and letting it roll me down the coaster. Fun is over. Here comes the tears. Why? Idk, nothing new. Why do I let it get to me?  Mostly because I want an answer and there isn't one. That didn't stop me though. I put a call in the dermatologist nurse regarding med changes we made a couple of months back has not made a difference. I'm concerned that in the last three months at least once each month the flair up involved my lip or cheek swelling too. I've read it's more reason to be concerned when it is around your face tongue or throat.

My next call was down a list of Psychologists in Baton Rouge. Mine up and retired out of the blue. The week before surgery I got a letter from his office. I couldn't worry about it then. I was planning to just taper myself off of one of the meds he has me on and switching the other because I don't think it's helping any way. After discussing this with my therapist she did not like the idea at all of me stopping the anxiety medication. The other she'd let my PM and GP decide on. Darn, I was happy to be scratching a name off my list of doctors but I got some advise from another respected source (you know who you are) and I have to do this fun chore of calling down a list and waiting for return calls. The names are few and half do not take insurance. I finally find one that states she is not taking new patients for treatment ( sessions ) but she would get back with me regarding seeing me for medication purposes only. I had let her know I had a therapist I was happy with.

The next call on the list was to the rheumatologist. I've been calling every other day for two weeks not to get my appointment that is on July 3 moved sooner. "I'm sorry he doesn't have anything until first week of August so no cancellations". It seems if your an established patient and you have a need to see your doctor you shouldn't have to wait a month. Scratch on that one too.

More digging for information on hives. As many times as I've googled hives in different ways I still seem to come up with something new. Only a tiny bit of info sometime but anything helps. So it seems all the money I've wasted on topical creams makes no difference. They do not help. I know that, but thought I just hadn't found the right one. Not the reason, it's because their useless for the stinging, burning or swelling. It's all internal not external. I give up.

When they are bad like these last flare ups clothes only aggravates them. Any pressure makes them worse. I guess I will become Pentecostal since I need to stay in a dress. That's not why I'm seeing my rheumatologist but I'm adding to his list to discuss the hives again because I read about auto immune problems related to hives.

Two out of my three calls were returned. The dermatologist and the Psychologist office. I'm lucky she was willing to appoint me for an evaluation and med checks periodically after that. Only bad thing was nothing open until 3rd week in July :-(. Nothing I can do about that. I asked to be put on waiting list to move up. Hands folded 🙏.

On a good note my stimulator seems to be helping pretty well. Still only needing a low low dose of pain medicine. I start with it on low and as day goes on I increase intensity.  I  turn it back down to low when I lie down at night. It can only get better with time. Another plus is that this is the longest I've made it without loosing programs. I have 8 and can still use 2 effectively.  I will get with Mr. R next week for a tune up.  I'm trying to remain positive. Hopefully tomorrow will be a ride up the coaster again. I'll take what I can get.
A few of todays.  Don't look so bad, but believe me some can be painful.  Like the one on the left side.  There is always one in the bunch that hurts worst.

As another chronic pain blogger says, Gentle hugs!  That's what I have to have right now.

Tuesday, June 19, 2012

Hives...Hives...please go away!

Why must I deal with these round welts on my body also known as urticaria?  They itch terribly and the swelling is painful.  They started out mild on the week end and continued to get worse.  By the time I went to bed last night they were as bad as the ones after surgery. ( The hives are nothing new, they've been around since '09, long enough) The back side of my thighs, on my hips and around to my behind.  So yes, there was no way to get comfortable when I did try and go to bed. My regime of treatment for them had not changed so I it boggles my mind when they make their nasty appearance.  I sprayed with some Benadryl even though they recommend not to if you've taken by mouth but desperation causes these careless acts.  I tossed and turned for hours.  If only I could get on my stomach, NOT!  I've just got to where I'm mildly comfortable on my back. The battery area is getting less and less sore to lay on.  I think these hives were worse being they cover a larger area.  No laying on back nor on side, they were everywhere and plenty of them.  UGH...I'm done on this rant.  I would LOVE an answer though.  Someone out there please give me some information.  I've seen everyone, read everything and take every thing. I pretty much have to live with them just like the nasty demon in the back. :-(

I realized my stimulator has been running non stop since last week when Lovely worked out some new programs with me.  Last time I went 6 days and it was 25 minutes.  Last charge was on Tuesday night so it had been 6 nights again.  It took me 45 minutes to recharge this time.  I wasn't prepared for that.  I think if I keep using at this pace I will not wait a complete week.  Not a big deal, I can make it 4 or 5 weeks but there is no way I'd want to sit that long to charge. 45 was not so pleasant. I'd rather have to sit less time more often than longer time less often.  Know what I mean?  Sure wish it helped with the hives also.

I didn't do much today.  I had to stay in my night gown due to the hives I couldn't stand anything touching them.  Undergarments was not an option.  If I had to have this flare up better today than tomorrow.  I was lucky I could stay comfortable.  I've been wearing a lot of loose clothing since surgery because of the incisions but my wardrobe over the past years have been dresses and skirts mostly because anything tight fitting just exacerbates them. 

Trying to keep my mind busy I started a new project today.  I really wanted to try another cookie/dessert from pinterest but until I get my rump into gear exercising again I better not do another to soon.  I'm just getting started and I think I messed up already.  Oh well, I'll finish and learn from it and start on a new one.  Only have time on my hand right now.  I can't wait to be able to give my house a good cleaning.  D is doing the best he can with inside and outside.  

Supposed to have a visit from a friend tomorrow.  I've shut myself up long enough.  I don't have a real reason to turn them away and have been wondering why I keep doing it.  A wise woman I'm blessed to know said we get used to being isolated and it takes a bit to jar us out of it and the way out is to allow our friends to visit and lend support. I really needed to hear this and please forgive me if I have offended anyone. It's not personal.  Just down right fear of talking about things I don't want to talk about.  I guess I want to be like the person on TV who gets the make over and walks into the room while their family waits to see the "new them" and I'm still me.  Not much change yet. Baby steps. Baby steps.

I hope to get some sleep tonight.  I feel like I just typed that sentence recently.  Peace to all who are suffering, lonely and in pain.  

Monday, June 18, 2012

Happy Monday

This week end was a good test of seeing how much activity I can tolerate since stopping my pain medication.  On Friday I went out to run a few errands.  First the fruit stand.  I love having fresh fruit around the house and knowing my granddaughter would be here made it even more important to have some around.  She loves her fruit too!  A swing through the bank then to Wal Mart.  Half way through my shop I was texting D to say I wasn't sure I'd should be doing this on my own yet.  Since surgery I've been to Wal Mart 3 times but he took me and of course pushed the cart.  When my cart started to get full I noticed it was difficult to push.  Even though I've always experienced it in past there was no need to worry because I knew I wasn't hurting anything.  But on this trip it made me a little nervous.  I skipped the bottled water I wanted.

During the unloading of the car I definitely knew I had probably over did it a little.  I had plans to bake over the week end so sugar was on my list.  Most of the time I complain that the cashiers waste bags by only putting one thing in a bag so I think it is so wasteful.  My lucky day I get a cashier who put everything she can in one bag, how can I complain?  As I grab the overloaded bags I grab the one with the 5 pound of sugar along with milk in it.  I'm supposed to avoid over 5 pounds so when I picked up that bag it reminded me of this recovery rule. (mainly because I felt it back there) None the less I made it home unload one bag at a time and I was even careful by taking the sugar out of bag by itself to be on the safe side.  A short rest and I was good to go again.

I really used my grabber a lot this week end having company around.  It's hard to explain to a two year old, sorry baby I can't pick this up can you?  Her dad's not the neatest person so I wanted to keep things under control so when they went home on Sunday I wouldn't be picking up for an hour as I've done in the past.  I bring up the grabber because I've been making notes of things that has really been helpful to me if you have surgery.   Not necessarily this type of surgery.  Any that you can't bend over or lift.  So later on I'll have a post of helpful aids for post surgery recovery.

Saturday I cooked jambalaya.  I had cut up all my veggies on Friday and was so happy I thought of doing so because by the time I was done I was ready to kick my feet up for short time.  My hives appeared.  I did experience a mid level of pain and there was some stress involved so I couldn't answer the war between my allergist and therapist on which is the cause.  And I'm sure your wondering, yes I had my stimulator on.  Matter of fact it has not been turned off since Friday morning.  I slept with it on for the last three nights.  It seems to help me relax a little.  Out of curiosity I check my battery level this morning to see where I was.  Last charged on Tuesday night the 12th.  Here is what I've used that's pretty good.
Don't think your crazy if you ready something and now you don't see it.  For some reason when I looked up something on the blog on my phone I noticed that every thing underneath the picture of remote screen was gone.  Ha, not even sure what I wrote about.  Couldn't have been to important.

I know I mentioned baking a cake for my son, his request for choice of baking. My husband wanted to try out the Nutella cookies I discovered on Pinterest.  They were yummy.  All in all the week end went pretty well.  It was a little stressful for me.  My blues and heavy heart will get much needed therapy this afternoon.  It was definitely a true beginning test of now well stimulator is working without pain medication.  I was really uncomfortable late in evening on Saturday and Sunday so both days I had half a pain pill and it was enough to make a huge difference.  I was really disappointed I couldn't make it without it but I really haven't been as active as I was for 3 days straight since surgery.

The stimulator is definitely very helpful and I still have healing to do before we can get some even better programs.  I have a couple favorites for when I'm on my feet but still having difficulty finding a comfortable sitting position even with stim unit on.  My husband purchased us a couple of anti gravity chairs at Sam's and they are awesome.  That chair I can sit it.  It leans back perfectly to get the pressure off of my lower back.  It has been nice in the am and late evening so I've been enjoying time sitting and listening to the birds and the water noise I love so much.  I could write an entire post on finding a comfortable place to sit over the last 6-8 years.  Sounds silly, but it's a big deal for me.

It's about time to leave for therapy.  After, D and I have an appointment for Dallas for his monthly nail trim and we're out of his flea treatment.  He has to have surgery next.  He has a tumor in his belly that has to be removed before it gets any larger.  The vet said before the end of the year, so it will be soon.

The Pond

P in Nonna's new chair!

A helping out with the watering.

Saturday, June 16, 2012

Stimulator Trial

If your considering a SCS implant and or your doctor has recommended one for you a trial is planned first.  I thought it would be appropriate to tell you a little about what it is like.  I wrote about it on May 14th as part of my history.  I'd like to give you a little more information.

To start, my experience was by now means pleasant.  Mr. R. still can't believe that I say that the trial was worse than the actually surgery implant.  Now when I say that, what I mean is the first 36 hours of post surgery was tough and uncomfortable.  After that is was possible to get comfortable.  Sleeping was not one of them but not everyone will have their battery place in the buttock like mine.  I only took an extra over my "normal" dose of pain medicine for the first 2 days then I was ok.  During the trial I had awful muscle spasms.  No warning of this.  In the blog I've mentioned "Chronic Stimulation" she mentions she has the same experience.  So much so she decides to do it all over again some months later.  Brave one she was.   Like me, she was hurting so much she didn't feel she had a true feeling of if would provide relief or not.  The second time she has it in for longer .  5 days I believe.

So you go in the dreaded ice cold room, again on the table to expose your back side.  You can feel them cleaning off your back and then the stick for the local to numb you up.  A small stick is made in two areas and the leads are place in through a tiny tube and then when they are in place they take the needle/tube out and you have these two wires hanging from your back.  The two wires connect into a plastic piece and then into the trial stimulator.  They discuss with you before getting you off of the table where you are feeling stimulation and then tape everything in place on your back.  By no means are you perfectly stable.  You really have to be careful not to jerk the things right out.  If you do, guess what?  Its over.  You have one in place to play with.  Not comfortable to sleep with.  Made me really nervous.

Within hours of getting home the spasms started.  Not anything pain medicine would help.  I just kept thinking, how in the heck will I sleep.  The first night I was so scared to death of ripping them right out of my back I didn't even use it.  By the time morning came I really just wanted the darn thing out it hurt so bad.  I didn't even feel my "normal" back pain.  Only this new misery they added on.  By mid day Saturday, no better but I was running the stimulator and trying to do what they asked of you.  Things that typically make your back hurt to see if this helped relieve the pain. I couldn't feel my back.  Crazy I know.  I'd never experienced pain in my upper back.

I had communicated with Mr. R over the week end about how uncomfortable I was and he was confidant it would ease up within the next 12 hours.  By Sunday, (it was placed on Friday) I was really depressed about the entire process.  Mr. R was really bothered by the fact that I was so up set and he got in touch with my doctor to get approval to leave another day and have me meet with his co-worker, he was not available.  This was done on Monday.  I was just starting to get some relief but it was still pretty uncomfortable.  I remember the drive there.  We worked for an hour and I just couldn't take it any longer and went home.  Another miserable drive.  Still no coverage where I needed it!  Total bummer.  I just thought this was just not an option for me.  I was crying waiting on Tuesday in waiting for my doctor to come in and remove the leads.  

This process my dear readers is the easiest of anything I've ever had done.  Was I nervous about it?  Absolutely!  And every other persons testimony I read said the same thing.  They were nervous about it but it was the easiest thing they'd ever had done.  Matter of fact taking the tape off is the hard part.  That hurt!  He told me to take a deep breath and on my exhale out the came.  Like spaghetti noodles.  He showed them to me.  Those are the darn things that have been making me miserable?  It was so fast, and I never felt a thing.

We talked about my experience and he wanted me to think positive because it wasn't a total wash.  He wanted me to see the partner in his clinic who actually does the surgery because they was a new lead, a paddle lead they were using with better coverage.  Not something you'd place for a trial.  He said it was so new they just starting using in November.  The paddle had been around for sometime but this one was larger and had more electrodes on it.  I was open to discussing it.  What choice did I have.  I did ask doc why couldn't he allow the trial to last longer so you'd have a better chance to tell how it was working.  And he said it doesn't like to go past 3 days due to the risk of infection of being in that long without closure.  I told him another doctor I saw for second opinion left for 7 days but didn't take out if it was helping you they just went ahead and closed the sites and implanted your battery.  He's heard of that but not the way he likes to do it.  Doctor preference.  He said why use the larger leads for permanent placement if it was not for you.  Larger scars and chance for scar tissue if they remove.  I have scars from my trial anyway.  No biggie though.  Made sense to me.  He also noted that a small percent of patients have muscle spasms like I did.  I'm always in that small precent.

When I saw the doctor for discussing the permanent implant we talked about if I decided to do it he'd give me some muscle relaxers in case I have trouble with any muscle spasms, some patients do he said.  Oh, I did.  I was miserable I told him.  What do you know, after surgery, not once did I experience any spasms in my upper back like at the trial.  The biggest challenge I had was getting comfortable with all the bandages around the battery area making it even larger and more uncomfortable than it was.  After removing at one week it was a little better but it took until now at four weeks to really be a big difference. 

In the end if your doctor only does a 3 day trial and you don't think that is long enough ask him about another day or two to see what he says.  I definitely could have used another 2 days at least.  Some doctors go 5 and some as long as 7.  Bottom line you have to be comfortable with your choice in how long you deal with this thing attached to you at all times.  No bathing!  Sponge bath only.  Nothing can get wet.  See another doctor if you don't like the answers you get.

Good luck if your deciding.  Going to the sites of the different stimulators are very helpful too.  I found a video on line where the entire thing was on video but wouldn't recommend it.  Remember it is a different experience for every one. 

GNA and wishing all pain free days 

Thursday, June 14, 2012

NO Pain Medicine

Therapy day.  We had a great session, but as always you walk out on cloud nine thinking about every thing you talked about.  Your start making these plans in your head and you feel so strong and then BAMB, your home and back to reality and you feel all that strength just drain right out of you.

 I love my therapist.  She is the second one, things just didn't work out with the first one I spent 6 months with.  A very smart, wise person told me it was ok to leave and find a new one.  He would understand.  And he did.  So I brought my stimulator with me because I know she sees others who deal with chronic pain.  I showed her how it worked and we talked about where I go from here.  She seemed very pleased at how I'm handling recovery and waiting.  I won't get into the other reason that keeps me seeing her but more time was spent talking about that than my surgery/recovery.  A family matter.  One that seems to have no end.  One that definitely effects my pain.  Both in my heart and my back.  

I turned on my stim the moment I got out of bed this morning and has not stopped running since.  I only changed the program once.  Speaking of changing the program, my dog absolutely hates the sound when the unit is locating the IPG.  It makes a sharp beeping sound until it finds it  then one long beep.  He now recognizes it and runs for cover when I get it out of its pouch.  One other thing scares him so and that is the vacuum.

First day with no pain medication.  No side effects.  Just the big nasty demon back there.  Its a different hurt now.  Kind of like before surgery maybe?  IDK.  I turned my stim off after getting in the car to drive to therapy and right back on before I got out.  So I am having an opportunity to feel thats its working.   No way I could tolerate without something for pain if this stimulator wasn't working.  By tonight watching tv it was starting to get annoying.  You kind of get tired of the buzzing, or whatever you want to call it.  It feels good but even a good feeling you can get enough of.  But you turn it off, you have to pay!  Maybe I won't be able to be med free.  But I want to try.  Even though I woke up hurting just like every other day, I had more energy and didn't feel so fatigued.  Most days I plead with myself to get up because I know if I stay in bed I don't have to deal with the pain.  I've accepted the fact that I may have to stay on it, maybe take less, but I have this mission to find out if a little more in tense pain is worth the other nasty feeling the pain med was causing.  I didn't know until now how it was dragging me down with side effects.  I have more time to heal, no rush I'll figure it all out.

My card from St. Jude came in today.  I'm supposed to carry around at all time.  Just means its stuck in my wallet with all the others.  If I'm at airport or any other place they want to scan me this card will save me.  I spent an hour searching for the "perfect" bracelet on line.  Med Alert bracelet that is.  They're all UGLY!  Don't like 'em.  Besides my dear husband gave me a tennis bracelet that is PRETTY for Valentines day this year.  So here is my plan.  The UGLY bracelet will stay in the car and I just slip it on when I get in and take it off when I get out.  My husband says, that won't work. ( me only wearing in the car)  What if something happens to you here at home alone, or when your shopping?  He knows I hate shopping.  I'm just trying to get out of wearing the darn thing.  Hence putting off choosing one.  It can wait.

I'll have guests for the week end.  Going to try cooking.  It's been tv dinners during recovery.  I may not be back until Sunday. Just have to see how it goes.  My son has requested chocolate cake for Father's day and D wants the Nutella cookies he saw me pin on pinterest.
I've got my work cut out for me.  I'll be cruising with the IPG on high!  Lets hope its enough.

Happy Fathers Day to all the Dads out there.  Including mine.  He's not here with us but he is definitely in our hearts.   

Wednesday, June 13, 2012

4 weeks

My first time out by myself today.  It really felt weird to drive not having done so in 4 weeks.  I have a little anxiety about an accident.  Under normal circumstances I'm a paranoid passenger.  If I'm driving and in control, not so bad.  Most of my family does not understand where this comes from.  I've always been a little anxious about it but it has increased since the back pain became chronic.  I'm always fearful of being rear ended and messing up my fusion, and now the leads in place. 

Ok, enough ranting about that.  It's been a good day so far.  I meet with a representative from St. Jude at my doctors office.  Mr. R is on vacation.  Hope your having a great time.  I really mean that.  He has back pain also so I'm hoping he is relaxing and it is giving him some relief getting away from work and the daily stress of life in general.

 Not that I have a preference, but this rep was female.  She was lovely, think I'll give her that name for my blog.  Lovely was very patient and praised me for the courage to try and taper off of the Lortab, but felt it may be a little soon.  As I already read and heard from other professionals like Mr. R that it could take up to 6 months to get the coverage where I need it and have it stay.  She said I'm still in baby stage as far as recovery.  But she patted me on the back and said I was strong for trying. I had written a log with what I feel with each program to make it easier to see what we need to do to change it for the better.  This pleased Lovely very much so I will continue so that maybe it will help Mr. R too.  I remembered to ask about the heating pad and was happy to hear its ok to use again. Woo Hoo.

Lovely fine tuned the ones that I couldn't use because they were to uncomfortable and we did some work to the ones that were initially placed at my one week check that only lasted for a couple of days.  Goes to show you how quickly things can change.  When I saw Mr. R last week I couldn't use any of them because they gave a lasso effect around my stomach and since about three days ago one of them was my favorite.  I'm understanding why they keep telling me it could be awhile before I can really expect to get a program to work for me in the area most needed and to actually stay there.  The tissue needs to develop around leads enough so that they stop moving.  Until then my programs will change. 

Lovely made it clear she is here for me and by no means did she want me to feel like because it was to early that she would not help me again.  She even offered to see me another time this week if I needed her.  She lives in Metarie which is an hour away so I thought so kind of her to offer.   When you battle chronic pain for a long period you feel alone like people just don't , or can't understand what your experiencing and she truly made me feel like she does.  I had to ask how long she has been working for St. Jude and her answer was 6 months.  I could have sworn it had been years.  She worked with dying cancer patients before which quickly reminded me it could be worse.

After leaving there I felt brave and went to Hobby Lobby to pick up a few sheets of scrapbook paper.  Darn, the $ Tree is next door.  I've been wanting to pop in there for a couple of weeks now.  Between the two I spent an hour.  It was 2pm before I made it home, left at 9:30 so I was pretty tired.  The encouraging part is my pain level I'd score a 6 so the new program is helping because only half a pill today and staying away from the ibuprofen as much as possible.  I used so much of it during the years before surgery I want to take as little as possible.  What I won't do it let it get so bad that it takes to much medicine to get it under control. 

By the way, I slept from somewhere around 12:30 until 8 this morning.  Wow I don't think my body knew what to think.  It's been quite sometime since I've had that many hours of sleep.  Tomorrow I have a much needed appointment with my therapist and between that visit and this morning  it will be like a make over, just not a "beauty" make over. 

Here is my incisions at 4 weeks.  They still look terrible to me but my eyes back there (D) says there is a huge difference from the last pics he took for me.  My doctor said the same last week.  They look fine, so why am I so blue about the way they look?  No one can see them. Ha ha that's funny.  Everyone reading my blog can see them.  I think that is the silliest thing I've written.  Maybe a good sign that I'm finding some humor.  

Thinking about my dad with Father's day coming up.  Make sure you reach out to yours and let him know how you feel.  Here one day and gone tomorrow and there is no changing that.
Don't let it be to late.

Peace and love to all.

Tuesday, June 12, 2012

A better Day

Better today than yesterday.  I'm ok with the same,  just not worse.  But better is great!  Twice I've had several days of what I call "back sliding" (I make up words all the time).  Only rested once for 30 minutes.  Worked a little on finishing up two painting things I was working on.  I'll post a picture.

I'm sure your wondering if I got any sleep last night since I complain about that a lot!  Not much, but more than zero like the night before.  I went down with my stim on.  Only the second time I did this since the implant. I didn't drag myself out of bed until 9:30 am the last I had seen on the clock was 2.  So a little progress.  I'm sure the muscle relaxer and gabapentin helped some.  I noticed a big difference in the night sweats which is one of the many reason gabapentin is subscribed.  For me it was nerve pain.  Hives about the same.  The ones I last mentioned are gone but a few new ones appeared before bedtime.  A lower scale than I've been dealing with so another good thing.

After 30 minutes of being up the nasty demon (pain) came out.  I wasn't gonna take it.  Spending the bed all day like yesterday was not an option.  I'm to far out for these "back slides"  I pulled out my stimulator and started going through them again.  What was helping a bit yesterday had already changed.  So I went through all the programs again.  Found #2 to be helpful today more than the one yesterday.  This is good.  A light at the end of tunnel.  I meet with a new rep tomorrow, mine is out of town.  I hope she is as nice and patient as Mr. R. I don't care how I feel while Im there I'm going to stick it out to get some better coverage.  Just hope she has the time for me.  

I've been compiling a list of things that have been helpful to me now and some more so for those first few weeks.  Some I already had, as I've said previously this ain't my first rodeo!
I also want to go back and see pre surgery what I wrote about leading up to this implant about my experience with the trial.  I may have just said I had one but not told about what the experience was about.  If you thinking of having a SCS implanted and or your doctor has recommended one you will be like me wondering what to expect.  They give you a dvd and a book to read about it.  I couldn't help but be skeptical about it though.  Do you really think they'd have a person give a testimonial and tell you the bad parts?  That's why it was so important to me to talk to others that had one in person not just read the testimonials from patients for the three different company's who make them.  Reading SCS blogs and and reaching out talking to others was very helpful.  I also talked to 4 people personally on the phone.  1 my mother put me in touch with, 1 my aunt knew from her church and a distant friend had a family member with one who agreed to talk to me.  Last, but not least, a patient who St. Jude put me in touch with that lives in a large town not far from here.  We emailed then also had a conversation by phone.  All different stories and all successful cases.  A booklet and a DVD maybe enough for you but it wasn't for me.  It took time to reach out and find these folks so you should be patient and not rush.  It's a huge decision only you can make. 

I charged my generator tonight.  I knew it would be fine but as stated before I'm a compliant patient.  Only a tiny used since last Wednesday when I charged.  It took 45 minutes then.  This time 25.  Not so bad.  

What a shocker.  I received my EOB from insurance on Saturday.  I couldn't get past the thought that something so expensive is in my body.  I already have a 25,000.00 cage around my spine at L4/L5 and couldn't believe that.  I don't know if its ok for me to put the price on here or not so I'll leave it out but I will say that when I had the spinal fusion in 2009 my hospital bill for 2 nights and 3 days was 45,000.00.  25 was the hardware in my back.  This surgery, not including doctor fees, was 4 x's that.  I'm worth a lot of money. (finding humor anywhere I can)


Hugs to everyone!  Sending good thoughts of pain free days your way.

Hanging in there

This post was actually from last night but forgot to publish.  I'm not all here right now!  It should be dated June 11th 

Last night was awful.  It reminded me of the first night I skipped the Ambien.  Here is how the last few days have been.  Friday I had an Am and PM.  Saturday an Am and PM.  Sunday only AM.  Wasn't a wise idea I should have did half in AM and half in PM it was to soon to just drop down to one all day.  Around 5 my pain was sky rocketing and I felt the hives coming on.

There is an argument between my allergist and my therapist that anxiety causes my hives but I say and the allergist aggress stress does not cause hives but it definitely exacerbates them.  Every time I have some "break through" pain my hives appear.  Like the pictures you saw two days after surgery.  I live it so I know, it comes out with the more severe pain.

Back to last night, I was so miserable that I got my stim unit out and tried all the programs again.  With no sleep my body is not thinking straight so not sure if I mentioned that I have been sadden since Friday night that the new programs were not helping at all.  Saturday I didn't turn on at all.  Some of them were actually uncomfortable.  So out of desperation I tried again last night and 1 out of the six had changed a little and seemed that it may be helpful.  I let it run until I was ready to lie down.  I wish I would have used some of the things I read on the internet to be helpful but my mind wasn't working right.  It's like there buzzing in my head and legs had control of me. Something holding my eyelids open.Like taking a warm shower or bath.  A muscle relaxer.  Only if you've experienced this before (withdrawals of a medication) it seems odd what I'm saying.   Watching TV didn't help it was only aggravating.
Last time I saw was 3. Turned the clock over then I remembering D tell me good bye and feeling like I had never slept.   

Today I took muscle relaxer and the neurontin.  I was weak all day.  Spent most of it on the couch except for taking a hot shower.  That did seem to help.  No appetite at all and when I did try to eat to get some energy it went right through me.  The one program is mildly helping with the back pain.  It's the closest its ever been.

 Mr. R is out of town :-(.  He great though. He emailed me right back to let me know that he would have his replacement get in tough with me.  I got a call form her this morning and she will be in Baton Rouge on Wednesday so we set something up.  Hope I'm over some of this other nasty stuff.  If she and I are successful maybe I can stay off.  Through more readying I know that I'm really being impatient on finding the exact program.  But I know that's what their there for and if I need to go once a week I will.  It's not like I had the right one and something changed through scar tissue or movement.   That's likely also.  We just need to get a little closer its so close now but it's complicated to just pick out right one because there are so many combinations to try.  I have high expectation that we can find one or two until I reach my 3 month mark which is where most people experience the stimulator to really be starting to help.  Hives still around today but in control compared to had bad they can get.

I hope I can sleep a little tonight.  I may try leaving my stimulator on.  It will take a little fine tuning because lying down makes it increase.  Tomorrow I drop down to one half in the AM and nothing in PM.  Hopefully only another 36 hours of these symptoms.  I need to be strong enough to drive to the clinic to meet with the St. Jude rep. the following morning. 

I also made an appointment with my therapist for Thursday morning.  I haven't seen her since the week before my surgery.   I know that will be helpful with these blues I'm having.  I'm really hard on myself.  I guess after everything I've been through I expected to just bounce right back and it feels like forever even though its not even been a month.  4 weeks on Wednesday.  I need to be more patient.

Thanks for being here.  Even though I haven't had many comments I know someone is checking in on me because I can see the page views daily.   On the 11th I had the most ever in one day 65.  Total to date is 761.  Your support helps me know there are others I may be helping.  

Sweet dreams to those of you who sleep :-)