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.

Wednesday, May 9, 2012

What to do?

We're at the beach enjoying a quite morning. We got here about 9:30 and there was only a few people around. The water was very calm. Hasn't been like that on this trip.  When we left there were quite a few families, still not as many as previous days.

D hears my phone ringing, not a family tone so I wasn't even going to check it , but I see it's my rep from St Jude who's worked with me through the trial. Decided I better call back and see what's up. Yes, something is up. I have selected the smallest rechargeable battery for my implant surgery. You have 3 choices. Two sizes in the rechargeable and a BIG DADDY that doesn't need recharging but doesn't last as long. Well the one I want is on back order. Won't be available until mid June. So I have choice of postponing or except the other battery. I always think the worst first. I didn't used to think that way but the last 10 years has changes the way I view a lot of things. Anyway, I'm thinking this is horrible news and I don't know what to do and while he is explaining to me how something like this can happen 1 week before surgery I see this beautiful dolphin jump out of the ocean. It was so beautiful. Two others followed and they continued to entertain us for an hour or so. There were 4 of them. First time we've ever seen them at the beach.

So back to my phone call I told him I'd have to talk to my husband and get his advise. Of course this messes with more than myself to change the date. Others are involved. My husband thinks its a no brainer. He said if I wanted the larger of two and they were asking me to take smaller or reschedule that would be bad but in long run I benefit. I told him its not his butt their putting it in! I don't want to put this off but I'm not sure I want to except someone else deciding for me what is implanted in my body. My rep was very apologetic. I know it isn't his fault but seems like they would have seen this coming sooner.

Finally, I hear back from doctors office. First call was made Monday morning. It's Wednesday and they finally called in my missing meds. We're leaving tomorrow afternoon. I'm thinking why bother? I'll be back to write more later. I've got some serious thinking to do.



our lonely little umbrella!


                                                                        beautiful clouds




I'm back.  It's 7:30 and we watched the sunset.  Had dinner at the boardwalk (The Crag Trap) so D could have his traditional "vacation lobster".  One of the things he most looks forward to when we come here.  Picked up my medicine at CVS, of course it wasn't simple.  When I got there they said my insurance wouldn't pay because they just filled 2 weeks ago.  We were leaving and I told D, it never hurst to at least try, let me make a phone call.  I called them and explained I was out of town and forgot some of my medication and they do have a "exception rule" for traveling.  It pays to always at least ask.  I was going to leave without it. 

I believe I left of in May of 2010 when I saw the 2nd orthopedic for another opinion.  I continued the anti inflammatory medication and the stretches I was doing at PT.  Around Sept or Oct I started hurting to the point again that I could barely make it through a full day at work.  Back to spending a lot of my week end in bed.  The doc I worked for recommended a massage therapist that his mother was using.  She was a different type.  Musculoskeletal 
I would try anything.  I went for first appointment and we did a lot of talking.  She was not impressed at the stretches I was doing.  She wanted to know if they knew I had a spinal fusion?  I told her I assume when the Dr. ordered PT for me he told them such but I'm sure I did because it was the same deal there, first appointment a lot of history and talking. I was doing some stretches she said she would never recommend someone who had surgery do. She told me my spine was absolutely straight and there should be a curve at the lumbar area.  She also said my tail bone was crocked.  Ok, that explains why my but hurts, not just my back after 10 minutes of sitting.  She gave me new stretches and I went back after for one appointment that was awesome.  I felt so good after I left there.  For about 24 hours.  She cancelled on me for my next appointment then after trying 2-3 times to get her I gave up bc she wouldn't return my calls.  I later found out her husband had died and she moved out of town. :-(

So, I went back to my own self help.  Just doing the stretches she showed me.  Walking at the gym.  Stretch some more.  By November I was barely getting through a work day.  I decided to go to the pain management doctor that did my discography.  He was nice.  Maybe I was still a candidate for an injection.  When I called to make an appointment he had taken a leave of absence until January so I had to see someone else.  I liked him though.  He was very well know in BR and had treated some important people including Jerry Lewis.  He was on several boards and his name was listed on the St. Jude web site as a doctor referral.  
He took a look at my MRI and Cat scan from earlier that year.  D was with me.  I liked that he talked to both of us like he knew that was just as hard for D.  He wanted me to start with trying to burn the nerves around the facet joints.  Its called "radiofrequency ablation"  Sounded horrible to me.  Since my fusion looked good thats where he wanted to start before injections in the spine.  Ok, set me up!.  Don't have a choice, can't keep my job or live my life this way.  

Just so happened by the time all this went down I had my first side done a week before Christmas then you have to wait two weeks (insurance requirement) before you do second side.  So that would fall during time they were closed and we had scheduled a cruise the year before.  How was I to know I'd be in the state I was in.  We talked about canceling but no car or plane ride was involved.  I could make it. It meant canceling excursions but otherwise we could just relax and get away.  Little did I know how painful it was going to be when the nerves start to die.  They warned me, but I figured it couldn't be any worse that what I had done already.  OMG, it was awful.  It kept me awake at night a couple times.  Completely different pain that my normal back pain.  It definitely felt like something "dying" inside you.  Our cruise was the day after Christmas until the day after New Years, then I went back for more torture.  No good results.  Just a lot of pain and soreness form all the different injections.

From Jan-April we did 2 different injections in my back 2 weeks apart.  Then a month or two latter we did my SI Joints.  In between the nerve burning and the injections I saw another doctor that does injections but he is not PM or orthopedic.  He was at Neuromedical center. He wanted to go straight to SI joint because he saw some inflammation there.  But I decided i would finish with the doctor I started with.  I only went to see this doctor bc the doctor I worked for asked me to.  He was friend of his and he was trying to hang with me and help get me out of pain.  After final injection, I was at wits end.  What now?  Who do I see now?

Well folks, I'll tell you the next time I check in.  We're leaving tomorrow.  I may be to tired to write.  Just depends on how I make the trip and what time we get in.

Here is D's Lobster
GNA

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