And Away We Go!

I survived steroidal shots to my right side bursa and hip.  Except for the LARGE bruise on the top of my right hand where the IV went.  Wednesday and Thursday were tough, these shots were painful.  More so because that is the side I lie on to read and watch TV.  Such difficult adjustments. 

I am still using program 1 on my St. Jude Neurostimulator, because it works and it helps the pain so much!  But I am going to try the other programs next week, just to see what they do.  Then I can productively suggest changes to the program.

Sunday is my birthday, I will be 59!  Which means on Monday I can say, "I am going to be 60!"  This is an interesting feeling, since my 50's have not been my favorite decade.  The best part of it, grandchildren.  There were 3 born during my 50's, adding to the 1 beautiful blonde boy we already had.  I mention blonde, because that is so unusual for my family.  So I guess I am ready to go wisely into my 60's, having a year to prepare.

One of the reasons for being optimistic is how much the Neurostimulator has helped, and the quality of Dr.'s I have.

I LOVE my Neurostimulator!

Last Friday was bad, all the way around.  I got an appointment with Dr. Carlson, but it was at 1:30 pm which meant no pain pills, since I would be driving.  I was a twitching mess!  And just what I needed --- another bout of bursitis in the good old bursa!  Bleeeech!  Apparently when I started feeling better from the Neurostimulator - I recognized other pains quite well!  Again - bleeeeech!
The end result - - - steroid injections today in the bursa and hips today at 3:00pm.  I forgot to ask if these were going to be bi-lateral - oops.

I LOVE the St Jude Neurostimulator.  Sometimes the buzzing bothers me a bit, but overall the relief I get is so much greater than the buzzing.  The chair I use at my kitchen table has a back massage pad on it.  I haven't used the massage feature for awhile, but since the chairs have an opening on the back, and my ice pack falls through, I just leave the pad on the chair.  I keep forgetting that I haven't turned it on, because I am buzzing.  HeHe!

I ADORE getting up each morning and knowing I might not suffer from mind numbing pain.  I have a friend that is currently suffering from a flare of Lupus and RA, and I sympathize so much!  There is a huge difference between pain, suffering, and misery!

I went to my GP yesterday, because my blood pressure was jumping so much.  It was 128/72!  Oops!

Ut-Oh! I Think This Is Sciatica!

Ouch! Ouch! Ouch!  This pain that hit me suddenly is familiar, and freaks me out - badly!  I had this last November, and wound up in bed for over 2 months.  I really don't want this pain.  The Neurostimulator  does not really address this kind of pain! Ouch!

I am a natural procrastinator.  This did not serve me well last November when I had this pain.  So after only 2 days, I left a voice message for Dr. Carlson's patient assistant.  This is how I know the pain has me freaked out!

That Didn't Turn Out Well!

Well!  For the 2nd time this week, I had symptoms frighteningly similar to a problem that began last November.  I got a pain around my lower buttocks where it meets my upper thigh, and it ran down my leg.  It wasn't just a pain, but mind-numbing, aggressive pain!  I was sitting at the time, recognized the feeling and headed straight to my bed to lay down.  I put Thermagesic on the area's that were bothering me, and rested for an hour.  When I felt better, I got chocolate to soothe and comfort and went back to resting!

This happened earlier this week also.  I believe two common factors are that I walked a short distance, and I used program 2.  I don't know if the program has anything to do with it, but I changed back to 1!

Freaked out!

On to Program 2

This week I am trying to be more organized about my St. Jude Neurostimulator.  I spent a few days using only program 1.  I have a tendency to move the levels up and down often, because they feel "drill-y" to me.  But I left it set at 3 hash marks and adjusted my position to change how it felt and how it helped.  I have had a lot of right leg pain this week, and program 1 was effective in helping the pain.  What fascinates me is that I forget about the "buzzing" until a pain hits, I then change my position to feel the buzzing stronger, and the pain goes away.  I think because I tend to "schlump" when I get comfortable, it isn't that I forget about the buzzing, it is that my position is preventing feeling it.  I have become comfortable with program 1, and while it would be very easy to continue, it would not make for effective experimentation.  Since I want several programs available, I believe I have to know what each does.

This morning I switched to program 2.  One major difference in this program is that in addition to the "volume" adjustment, I can control the intensity on each leg.   However, these settings can not be permanently changed by me.  Once the device is shut off, the intensity settings are lost.  Not a huge problem, since I can study the settings and/or write them down, then reproduce them.  On this setting I can feel buzzing in my left leg a little more than with program 1.  Additionally, this program feels more "tingle-y" than "buzz-y"! 

During the process of evaluating program 1, I was mildly active.  I walked to the corner of my cul-de-sac and back, but not the circle part.  I also did some shopping, but I have not driven.  Since switching to program 2 about 30 minutes ago, I did the same walk.  Feeling stronger when I walk is not a factor in evaluating the programs, I believe it is a function of healing and resting.

I have an appointment with my general doctor on Tuesday, September 24.  I have gained 12 pounds since surgery.  This isn't the first time this has happened, where I have not made any dietary (hahaha) changes and gained weight rapidly.  When I tried a different muscle relaxer after surgery, I could immediately feel my body change.  I feel like I am burning up inside.  Since I live in Arizona, feeling hot is not something new.  However, this is a feeling I have had before.  I didn't even notice when it stopped, and I lost 35 pounds, but I did notice it beginning again.  One possible cause is the Kannalog shots I had for arthritis, allergies, and Fibromyalgia.  I am beginning to wonder if this feeling is a result of having steroids in my body....... Hmmmmmm

Tired already!

Charged!!

So....My device is fully charged up, as is the charger that charges!  I am having a good time experimenting with the programs, and keeping notes so I can have adjustments made more precisely.  I have a very low tolerance for "buzzing".  I prefer the Neurostimulator to have a more soothing pulse.  So I am working on that.

Small post - happy Monday!

Where Did The Feeling Good Go?

I have been feeling pretty good, and enjoying it.  But something happened and I don't know what!  I had a Dr. appointment this morning and then had to go to Walgreens.  I started feeling bad as I was leaving Walgreens.  The location of the St Jude Neurostimulator started aching and burning.  When I got home I took my pain medication cocktail - Percoset, 1 rapid release Tylenol, 2 Advil, and 2 mg of Tizanidine.  It took awhile for me to start feeling better, but the device site was still bothering me.  I read for awhile and then sewed for awhile, just feeling the ache.  When my husband got home, he rubbed some lotion on the surgical sites for me, and mentioned I was swollen at the device site.  Well that explained things!  He helped me look at the site, which was noticeably swollen and red.  Luckily, I had some antibiotics left from a sinus infection.  I took one, and have 3 more.  Hopefully that will get me over this hump.  IF the site is still red and swollen in the morning, I will try to get in to my general doctor.  Of course, I got freaked out!  I have bonded with my Neurostimulator.

Updates to follow :)

A LONG Morning of Doctor Appointments

First thing this morning I had an appointment with Dr. Carlson, my pain doctor (http://www.thepaincenter.com/ )).  I adore my pain doctor, he is kind, considerate, and caring.  He was as pleased as I was about the St Jude Neurostimulator ( http://www.poweroveryourpain.com/?gclid=COjU4bLdwbkCFUfZQgod-2EA2Q ).  I am excited about the progress after just 1 month.  The bladder disease I have, Interstitial Cystitis (IC), has been acting up and causing me to get up every hour at night.  Dr. Carlson said I could still get RFA's for this, so that was good news.  They hurt like all hell broke loose, but help for 4-5 months. 

I had told Steve (St Jude rep) the wrong time, so he hurried on over to Dr. Carlson's office to reprogram my Neurostimulator.  I was going to write down all the different programs, but thankfully Steve had a printer on his re-programmer.  There are 6 different programs, including 1 that covers only my right side.  Additionally, 2 of the programs I can adjust left and right!  Two of the programs allow me to adjust left and right!  Now that is progress.  I am excited about trying out the various programs, and hopefully starting to feel stronger for longer each day.

After, the appointment with Dr. Carlson, I had my yearly checkup appointment at my Urologist (www.peedoc.com ), for the Interstitial Cystitis.  I have been with Dr. Nelson for over 13 years, and he has been incredibly supportive.  I have samples of a new medication for the IC, and a prescription to try of a bit higher dose, after I use up the samples.   The only good part of having a disease that starts getting recognition is that it gets research dollars also.  I also have been wanting to let Dr. Nelson know that his support throughout the disability process and illness has been a gift, and he told me something very insightful off the subject of medicine.  We were talking about families and stress (hand in hand :)  ) and he said he believes every child is born with a personality, and no matter how well they are raised, their personality will eventually come through.  A helpful comment at this time.

What was I thinking making 2 appointments on 1 morning. 

Tired!

Can You say Plie!

I have become very good at ballet moves!  I plié many times a day, since I cannot bend.  This would be  more fun if I was younger and good knees!   I figure my artificial knee only has so many bends before it wears out.  Point is another thing I am getting good at, although, I usually do it barefoot!  I actually take this quite seriously, because I enjoy being independent.  Some things are too minor to get my grab it, so I plié.  **Sigh**

Today has been a very good day.  It is almost 7:30 PM so I am quite comfortable saying that.  I went to Costco this morning, and Marshalls this afternoon. The carts weren't heavy either time, so that really helped.  I believe part of the reason I have felt good today is that I took a pain pill and muscle relaxer at 3:30 AM.  Then I slept until 9:00AM.  I also had company.  My DIL Stephanie and my gorgeous granddaughters came over, and my cousin.  Now as the day comes to a close, my hubby, Steph and the girls are driving through Wendy's!  Hooray!  Chicken Asiago sandwich here I come.

I didn't have to do many adjustments to the Neurostimulator today since I was up and around.  I turned it on prior to Costco, lowered it when I lay down to read, and back up again when company came.  So it has been up for about for 6 hours.  What I find troubling, besides the feeling under my right rib cage, is that positional changes affect the effectiveness so much.  For instance, I am sitting by my computer, I bend my head down and no longer feel the device.  When I sit up very straight and raise my head, I almost vibrate off my chair (I exaggerate!).  Tuesday morning I will be getting additional programs.  Excited!

Whiney, Sissy, Brat!

Yup...That is what I am sometimes!  I am fully aware that my pain levels have been reduced by a single program on my Neurostimulator, and that there will be many other programs available that will help.  But I still get angry at the pain, and I still whine.  This morning I am feeling my limitations.  These are not new limitations, I just pushed them before.  Now I won't dare, because I don't want to cause problems with the lead or the Neurostimulator.  So, what is the whining about?  I had the urge to color with my Copic markers.  When I color I tend to hunch over what I am coloring, and I know that I cannot do that.  So I whined!  Logically I know I can change my methods somehow.  And that the wonderful people I have as Facebook friends would give me tons of suggestions - but first I must whine! 

The benefits of waking up each day knowing my pain level will not start as an 8 (scale 1-10, with 10 being give me morphine!)  is a gift.  The St. Jude Neurostimulator has worked that well.  My mind is clearer, because it is not consumed with pain.  This is something I do not believe anyone but chronic pain patients understand.  And I think that is a good thing for them.  Now that my mind feels better and I can think more clearly, I know when I am rested from surgery, and cleared to begin activity, I want to work on my weight and stamina.  I can't wait for the days, when I feel so much better, and pain pills are not as necessary. 

I have gone out each day this week, and have not hit anything in my garage - or elsewhere!  Tomorrow I am not going anywhere, just resting.  It is still a million degrees out, but more than that, it is just difficult to get in and out of my van.  The difficulty would be there with any vehicle.  It's the turning while sitting, the backing out of parking spots, and the areas the backup camera does not cover.  Next week, I have to go out two days for Dr. appointments, and I am sure I will want at least another day.  However, I think taking it easy is my future.  I am quite sore today, and while the pain doesn't feel internal and/or spinal in nature, I am also very exhausted.  So rest!

There are many things  I can do at home.  I am not a fan of daytime TV, so I think I am going to work on the challenge of coloring.  I think the first thing I should do is get a clipboard to hold the images.  I am starting to feel like quilting (English Paper Piecing) again.  Also,   my very awesome Stampin Up friend gave me about 100 card fronts to make into cards for Operation Write Home.  I have hundreds of books on the Kindle that I have not read (many  haven't wanted to :) ), and a few hard copy books.
I am also setting a goal for myself to write at least one Any Hero note per day until Halloween! 

Off to heal!  Such hard work!
 

Any Morning Without Pain - - -

I can't really consider this a morning without pain, because I woke up at 2:00 AM in an a lot of pain, and took a pain pill, half of a muscle relaxer, and Benadryl (pediatric!).  So waking up without pain is most likely brought on by my nocturnal activities.  I try very hard, and I am very careful about taking medication during the night.  I do not feel that I am awake enough to make and remember decisions.  Otter pops and cookies are excluded!

I know that stress and sadness affect my pain, just as happiness and joy do.  My stress level is affected by several things:  my husband being priority challenged sometimes, and having to conduct a head removal (I will let you guess from where!)  Worrying about my grandchildren - as I worried about my children; and also worrying about pain.  My sadness was very specific yesterday.  My happiness more broad.  I was driving and listening to a Zac Brown cd, to a song titled, "Let it Go."  My favorite lines, "Save your strength for things that you can change, forgive the things you can't, You've got to let it go."   Working on it!  Because I know that my pain is directly linked to my stress which is directly linked to my acceptance of 2 concepts:  First, that you have to let stupid people be, and they will be; and second, that I raised two very honorable men, that my oldest chose to not remain that way, is neither of my doing nor fault. 

I also believe meditation would help if I could do it.  It is impossible for me with my insides buzzing, and my involuntary twitches!  Not to mention being more ADHD with each day older I become!

Well, it is 10:40 AM, I have returned from getting my glasses straightened out.  I even drove through McDonalds.  Kind of regretting that now, not the driving - the eating.  But, I ate at the table!  Yahoo?  I usually grab a cookie and lay down to read by now.  The cookie is only so I can take pain meds if I need them!  Sure!

I have not yet turned on the Neurostimulator, which I am going to do.  Then I am going to try to de-compress and get in a minute of meditation - my longest time yet!

It is almost 8:00 pm and I realize I should not have gone so long without pain pills today, that my surgical incisions still hurt, and that I really really am tired of pain!  I have to find a new game for my body to play!

Baseline For Over Doing It

I have my baseline!  Sunday I went shopping to two stores - we weren't even gone an hour - but I knew!  I had over done my activity level.  So back to resting.  I still think if the stores had been cooler, I would not have felt quite as bad.  My pain level Sunday evening was about an 11 and the device was not stopping my leg pain.  I was frustrated, tired, and hours of unresolved pain had cost me.  I finally took a larger dose of pain medication, and started feeling a bit better.  My leg pain still was not resolving. 

Monday morning, I woke up to leg pain.  I turned the Neurostimulator on earlier than usual, and spent the day resting.  Because I could not get quite comfortable, I turned the device up, then down, then up.  The higher I turned it, to get relief, the more it hurt.  Around mid-day, the discomfort got a bit less, and I was able to rest for awhile. 

Today, I again woke up with leg pain.  I don't sleep with the Neurostimulator on, but I am going to ask the rep about this.  The device no longer feels like a balloon under my ribs, and this may be why it has not been helping as much. I have tests to take today for my yearly urologist visit, then back to resting...

Boring!