It Is Still Day to Day

Feeling better, and having freedom over pain is a day to day challenge.  Some days I am simply not up to the challenge.  The weather appears to be a big factor in arthritis and Fibromyalgia pain, and the Neurostimulator just doesn't help those aches and pains.  The last 5 days I have gone about my plans, regardless of these or any other pains.  Yesterday I gave in to the exhaustion and rested.  Before resting, I went to Barnes & Noble to get several items.  This was very enjoyable, and energized my soul.  I bought the 25th anniversary edition of "The Polar Express" for a grandchild my husband and I plan on seeing when he reaches his "majority"!  This allows my soul to be at peace.  I write to him in a journal, make cards on holidays and include cash, and I have a box of things that he can have when he is older.  We count him as a grandchild, because he is.  A child should never be held responsible for a parent's stupidity!  I am doing "The Elf on the Shelf" at grandma & grandpa's.  This got me excited, and it will give me something to look forward to every day for a month, while I take pictures of the elves doing naughty things at grandma & grandpa's.  The elves will be part of the items he will get when we meet him - that and a lot of money! 

I enjoyed my trip to Barnes & Noble, I felt normal.  I walked around without a cart or walker, and although I started hurting, it was quite manageable.  By the time I got home I was ready to give in to the pain, it had gotten the better of me.  I read in bed for part of the day.  My mind remained active, although my body said --nope!  The interesting thing I find about being so physically exhausted, is my inability to sleep.  Today, may be another rest day, after the exterminator leaves.

On my last visit to Dr. Carlson, my pain specialist, I asked for a lower dose of pain medication.  Oops!  The lower dose doesn't take away all of the different pains I have.  So I am still in pain when I am ready for another dose.  After a few days of this, I found myself getting very irritable, because I just never felt all the way better.  Pain is relative, you either feel it or you don't.  I may have requested a lower dose to early.  I have felt so much less pain since having the Neurostimulator, that I foolishly forgot about "other" pain. 

Living pain free is my goal!  I guess I may have to lose weight also ---- but that is for next time!

I Wish I Could Be Pain Free All Over!

Happy Friday!  Off to a card making group in a bit, and hoping my hands make it.  I wish the Neurostimulator could help all over my body!  My hands are full of pain -- even my cuticles feel arthritic!  My knuckles are getting bigger, and it is hard to straighten my thumbs.  My palms are swollen also!   The places I walk into doors and walls at night hurt also --- I should open my eyes!  My hips are of great concern.  I had shots on both sides - and I am still waiting for relief.  My ankles hurt - but not consistently - just a surprise here and there!  My shoulders and upper arms are arguing with my hips about which bone gets a new joint first!  Finally, I am burning from the inside out.  Welcome to Fibromyalgia land!    I keep thinking I should write this "attack" on my calendar, in case it happens on the same days next year. 

I won't be able to take a muscle relaxer until later, because I won't drive with that medication.  When I get to the group I am making cards with, I will take Tylenol, Motrin, and a pain pill - reduced dose, and it will have worn off by the time I leave to drive home. 

No alarm clocks for two days!

What I saw when I left my home today --- there were 6!

 

 

The one that was on my 6' block fence last night was probably with these guys!



Quite An Experience!

Yesterday I had some girlie time with my DIL Stephanie and my sweet (hahaha) granddaughter Naomi.  We haven't gone out together in awhile, so this was a special time!  To prepare for walking around I typically turn up my Neurostimulator "BuuZZ", and take the "up/down" remote.  When we got to Marshalls I found the Neurostimulator was too high, so I took out the remote and attempted to change it.  The IPG could not be found!  Scared me!  I changed locations to just inside the door, and tried several more times.  Frustrated and ready to give up and shop, I went to find Stephanie and Naomi.  Being slightly (haha) OCD, I tried again and it worked fine!  I was about 25' from the door this time.  My conclusion, the Neurostimulator is affected by whatever Marshalls had going on in the doorway!  I figure it could be magnetism or theft detection programs --- but it was very scary!

I didn't try to make changes at Bed, Bath and Beyond, or Target - maybe next time.

Joann's has 60% off coupons today --- guess where I am going!

When You're Happy and You Know it.......

Yesterday I continued to try out program #3, and found it just wasn't what I needed.  I know exactly where I need to feel the stimulation to help my pain, and not have the Neuorstimulator cause discomfort.  I also tried out program#5 because it appears to concentrate on my right leg, which is where my current pain is.  Although this helped somewhat, it wasn't what I needed.  So, I went back to program #1.  I think some programming is in order, this time I am bringing my belly band!

This morning I took a drive to a Stampin Up friend's home to pick up some card kits.  I have not seen her in a few months, and she said I looked great!  Amazing what less pain does for your face!  Happy dance!  We stood (operative word - stood!) and talked for awhile, and it was marvelous to feel independent and capable of having a life again!  I am still not up to attending her card workshop coming up next weekend.  Four hours on hard chairs just isn't on my capability chart yet.  Then, I went to a local scrapbooking store where another card making friend works.  She told me I was looking good also!  Another happy dance!  I love craft stores!  I have not been there in months, but I am enrolled in a class there on the 16th.  I walked around without a walker for about 15 minutes, picking wonderful paper to purchase, and a few totally awesome rubber stamps.  They carry a line of sarcastic rubber stamps!  Missed that opportunity!  I ignored the pain rising, which in hindsight was not such a good idea.  The first thing I noticed was heat and nausea.  I stopped, paid and left.  Well not before I took a mini Snickers bar for the ride home!  I knew the pain was coming, but pushed on.  I usually pay the price for doing this, but there was pretty paper!

So now I am going to rest for about an hour - read - rest, interchangeable!  It is unlikely that I will make it past noon before I feel the need for pain meds.  Totally worth it!  Still doing the happy dance!   People who have known me for awhile, and have seen me suffering, recognize the difference in me!  THAT is worth a happy dance!

Off to rest!  OH - I have to charge the Neurostimulator today!

Program #3

On my second "setting" meeting after my Neurostimulator was turned on, my St. Jude rep Steve Sharkey and I worked on settings.  I wanted several choices, and he gave me 5 programs.  Apparently with each program I can set the overall buzz (don't know what else to call it!") and then set the level of power I need.  Prior to 1 week ago I did not need much power to solve my pain issues, however, this changed and I have been needing more adjustments.  Although having to frequently adjust the Neuorstimulator is "bulky" and a general "pain in the ass" - compared to mind numbing pain --- it is an absolute pleasure!!!! 

When Steve set my Neuorstimulator's programs, he gave me a printout with information about the programs.  The information is relatively easy to use as a comparison of programs, and if there are people contemplating having a Neurostimulator implanted, or readers who already have one, I would encourage you to spend some time with your St. Jude rep and set several programs and get a printout.  I am very grateful that Steve has the willingness to work with me on having this device function successfully.  I have come to realize that understanding how the Neuorstimulator works for me is different than how it works for anyone else.

My leg pain persists and I have found the place on my back that likely causes it.  Since I had previously taken a series of shots, it is difficult to remember which one helped this problem, but my best guess now is the epidural shot.  My next appointment with Dr. Carlson isn't for 2 weeks, so this gives me time to further pin point the location.

This morning I am doing my laundry!  My washer and dryer are both low and deep on the inside, so I use a grab it tool.  This tool is an essential part of my day, since I drop things CONSTANTLY!  I don't bend to do this, I don' stretch or twist either.  The key is patience.  One item at a time, brought up to a level I can reach.  This is harder with wet items, but still one item at a time makes it do-able.  And I enjoy a bit of independence in my day.

Despite doing laundry, today is a rest day for me.  My favorite candles are lit, my house is scented with Mulled Cider, Apple, and Cobbler on the Porch!  These are relaxing fragrances for me.  I used to bake often.  I haven't done much of that in years, and more than the baking I miss the aroma.

Off to finish my morning website viewing - good day, and if you cannot be pain free - may it be manageable.

I May Have Said This Before!

Soooo - I have learned that passing magnets, or being close to magnets should not cause "Buzz" (sounds like BuuZZ) to literaly buzz more!  I have always been very sensitive to the type of stimulation that a neurostimulator sends out --- and I swear it buzzed more!

I have had intense leg pain for almost a week.  I know it comes from my back - but I don't feel any back pain.  This makes it hard to judge where it is coming from -- but I am fairly certain my leg is not the origination point.  I have stayed with program #1, however I have to set it fairly high in order to get relief.  While this helps my leg pain, it is fairly annoying to other areas!  Perhaps it is time for a change of programs.  I accidently came across an option on program #1 that allows me to make changes.  I am headed towards program #3 today, hoping it has this same option.

Buzz (my name for my St Jude Neurostimulator) has allowed me many happy hours that I would not have had.  I did a 2 day garage sale, enjoyed my family immensely, and went out several times.  I even helped with breakfast on Sunday - set the table!  It was nice to be in the kitchen again - even for a short time.  The black cloud of pain, disappointment, and depression has lifted, and I feel life.

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