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, April 19, 2014

No place like home

Well, I made it back safe and sound.  I won't say I returned rested and relaxed by no means.  I'll take safe and sound first anyhow.   I knew before we left sleep would be an issue for me.  I have trouble getting it at home in my own bed.  For to many years I've been awake all night away from home not able to sleep.  I had my psychologist prescribe me 5 Ambien in case of desperation.  

It's an awful medicine to get off of if you take to long, my opinion, so I swore I'd never use it again.    Never say never.  The first night the weather was terrible.  We had a balcony stateroom so you could hear all noises outside in the ocean.  It was the first time I'd been on a floor that high.  ( because of balcony) You notice the rocking of the ship a lot more on deck 9.  Thank goodness there was only one other night of bad weather.  I was pretty scared and not ashamed to admit it.  My mom was out enjoying herself that first night and at 2 am my anxious self was still wide awake when she came in.  Yes, I'd taken the ambien.  Even after she was in I still couldn't relax and sleep.  Lets just say she makes a little noise when sleeping.  Like my dear husband, but a little louder.  The first night was pretty rough and I was glad to see the morning come.  I got approximately 3-4 hours sleep and my body was not happy with me for it.  

Each night was some battle.  My mother worried about me so much she purposely stayed out one night hoping I'd get some sleep.  Unfortunately, I don't sleep on demand.  Kind of like a day time nap.  No matter how tired, my body just refuses.  By Wednesday night I'd come up with putting my ear pieces in my ears instead of just resting my phone on the side of my pillow.  ( using the pink noise app)  When I did go to sleep this helped drown out any noises in the room.  Yes, there were others.  A creaking door that lead to connecting staterooms.  Our noisy guests next door.  They really didn't care what time it was to go out on the balcony and make noise and celebrate.  Next cruise, if there is one, I'll request to be in between two elderly couples.  

"The Pearl" Our ship is behind, a little bigger "The Spirit"
Outside of the sleep issue we enjoyed ourself.  The food was wonderful.  Hard decisions on where and what to eat.   So many options to do it was hard to choose each night.  One night before a show we went to game show at a night club.  The band played a snip it from a television series theme and you had to take a guess and write it down.  The crowd was in groups and very competitive.  I surprised myself at how many I knew.  Turns out many of the 25 were from when I was little so I knew the answer.  My mom recognized the music but didn't know the name being she didn't really see the programs.  Some of them were: The Brady Bunch, The Adams Family, Green Acres, Bonanza, The Pink Panther, The Odd Couple and The Rockford Files to name a few.  That was fun.  Another lady with us was really into it and got so excited with everyone we had right.  You'd swear our prize was a million dollars.

Every night there was some sort of excellent entertainment in the "Stardust Theater"  On the Monday night we saw a comedian who had our jaws hurting he was so funny.  I haven't laughed that hard in some time.  There was an act of two Russians, ( male and female ) who were amazing.  I don't know if they were lovers, but they sure seemed to be.  It was a beautiful, death defying romantic performance.  I won't bore you with every night.  It was well worth your time to go an see.  The only down side was we had to really get there early to get a seat at the end of an isle. The theater held a lot of guests but it was one long isle.  You know, where there is no way for someone to pass unless you stand up?  It's quite and effort sometime for me to get up out of those types of chairs.  I didn't care if I had to sit at the top.  It was worth it to not climb over people and to stand up and stretch any time I felt like it.  

My friends and family are very familiar with my cushion I carry around everywhere with me.  It made it all over that cruse ship and back home.  If only it could talk....

After a show one night they had a chocolate lovers buffet.  There is not one thing chocolate they didn't have.  Cheese cake, any and every kind of cake.  Chocolate sculptures.  Chocolate covered things!  It was a sight to see.  The only down side was the time of night.  It was late.  I really can't have caffein after lunch much less at 10:45 at night.  That's ok, my mom enjoyed for both of us.  Love you mom. 

one of the chocolate sculptures 

I would say one of my moms favorite things was listening to music.  She loves to hear a live band and loves to dance.  She even got up on stage with one female singer she befriended and the lead singer officially titled her as her "back up dancer". My mom got a huge round of applause after.  I took a few pictures during then I took off before the song was over in case my mom came towards me.  Hee hee.
Seriously I'm just joking.  She loved it and I loved seeing her enjoy herself. 

Mom's new friend

"Proud Mary"

Another thing the two of us enjoyed was a massage.  I went first and she had hers a couple hours following me.  We had the same massage therapist and she was great.  I've never been disappointed with a massage on a cruise.   This was my third time cruising and my third time meeting a wonderful person who taught me something.   They had a steam room to use and I definitely made use of it everyday, but once.  It really helped with the bursitis and fibro pain.  Oh how I miss going to the one at the "Y".  It feels so awesome when you leave.  If you've never tried it, please do.  It's great for muscle and joint pain, to release toxins and leave your skin looking good.  I'm sure there are many other benefits.  

We got off of the boat on three different occasions.  My mom and I were a good pair for shopping because neither of us can make it very long.  We were usually ready to return around the same time.
At every port we met interesting people and had good conversation.  It was the same on the boat.  Every night we met someone new and then would end up seeing them again.  I met a couple the first day who were on their honeymoon and I saw them most everyday.   With 2500 passengers you wouldn't expect it, but it happened.  He had been on quite a few cruises but it was her first.  

goofing off in Costa Maya

She's going in
During dinner at one of the nicer restaurants we met an interesting couple who'd seem to done a lot of traveling.  They had some interesting stories to share  On the other side of us were two nice gentlemen who were just as pleasant and joined us in our conversations.  Made for an interesting dinner night.  We only seemed to meet and spend time with very friendly people.  Breakfast, lunch, dinner, shows, karaoke, dancing or site seeing.  We didn't run across anyone who wasn't kind to us.  

At dinner one night
With all that said, I still couldn't be happier to step foot on the port of New Orleans.  Check my passport and let me out of here.  I miss my hubby and my family.  I haven't been that happy to see him in some time.  I guess it's good to get away from your spouse sometime to really appreciate them.  Of course the baby at home really missed me too.  Dallas.  I'll update you on him next post.  He has a surgery coming up in two weeks.  I didn't sleep much the first night home, but I will say the second night I was sleeping at 11pm and did not wake up until 9:45 am.  VERY unusual for me.  I sure needed it.  I can't tell you the last time I had that much sleep.   

I'm struggling with fibromyalgia pain at intense levels.  Hence my outbreak of hives since I've been home.  It made two weeks yesterday that I've been off of the Lyrica.  I'm not sure how I'll continue to keep going without it.  The good news is my stimulator is still in check.  I believe I'm setting a record for myself now on time between adjustments.  I'd never have survived the cruise without it.  

Speaking of my stimulator, as a fellow blogger who recently stated, you get to cut the line when passing through the zapper. (that's what I call it)  I had my card out to show them and they barely looked at it.  He just waved me on over and patted me down.  On the boat, as we got on and off at various ports, it was even easier.  I flashed the card and they just had me bypass.  No patting.  

I'm praying for a blessed Easter Sunday for everyone.  Don't over do it please.  You know the following day is really the one that kills you.  I'm thankful to be home.  I'm thankful for my life, my family and friends.  I'm also thankful for the support of the above and my readers.  Your emails and own blogs inspire me to keep on keeping on sometime.  

God Bless.....
Full of H.O.P.E. 

Tuesday, April 1, 2014

Where do I start?

2 week pictures
Spring pictures of A
Where do I start?  I'm not doing to well and it shows in keeping up with my blog.  I've come to realize when I'm feeling better I tend to "want" to blog.  I've really had a tough time through this hard winter we had this year.   I think about it a lot, and feel like all I will do is complain and who wants to hear that. 

I was reading something in a book about dealing with chronic pain and the writer mentioned to not be afraid to let your friends and family know and help them understand how your feeling.  If you don't, they won't understand your behavior at times.  What happens to "you" is you shut yourself off from everyone.  I watched it happen to me  multiple times even though I've been in therapy for 3 years now.  This blog was meant for reaching people who deal with chronic pain and/or have a SCS.  it was meant to be a pain journal so to speak.  Someplace I could feel comfortable talking about how I feel and how I'm dealing with it.   So here I am back to complain.  I really should continue to do more of it here.  As I get through some tough days I'm angry by the time I arrive home.  Depressed or angry.  I don't know how to stay in the middle.  As I've said many times my husband ends up take the brunt of my release.  

My latest ailments outside of the everyday trials are a flare up of my gastritis/reflux and the bursitis.  In my last post I was feeling so positive that the bursitis was almost gone.  I was feeling very little and was continuing to do the stretches even though I'd been released from OT.  Within weeks it was much better but unfortunately it just moved areas.  I woke up during the night soon after with my upper arm on same side hurting.  The pain was all the way from top of shoulder to my elbow on the back side of the arm.  (tricep area)  Over the last month it has increased to the point I can't lift my arm straight out or past shoulder area.  I decided to just deal with it because I had an appointment coming up with my rheumatologist.  My OT had already told me the PT would be the person to help me with anything above the elbow.  I know Dr. C could give the recommendations and stretches I needed.  I preferred to wait for his advise.  

Meanwhile, during the same time I was waking up every morning with a burning sensation in my stomach.  I was also very nauseous to the point I didn't want to eat anything.  I put up with it for two weeks then decided to go ahead and schedule with my gastroenterologist.  I figured they'd be sending me a card soon since it had been a year since I'd seen him and my Nexium was about to be out of refills.  It just so happened the appointment that was available was the same day as my rheumatologist.  The times worked out perfect.  I really love getting two over with in one day instead of going back to town on another day.  

I saw the gastro doctor first.   He said some people build up a tolerance to reflux medication just like a pain reliever so first thing he wanted me to try something new for the reflux.  Secondly, and sadly, he wants to do another scope to compare the changes to the gastritis.  He was not comfortable with he amount of ibuprofen I'm taking.  I told him I really don't have a choice.  I refuse to increase my pain medication.  I may have a change of heart if my scope shows a big difference but I'm praying it's his first thought. Maybe the Nexium isn't working any longer.  My husband has been taking Nexium for years and never had to change.  His symptoms haven't returned though.  

After leaving there I went straight to see my favorite doctor of all of them.  He is the nicest person in the health care field I have ever seen.  Believe me when I say I've seen a lot.  He always sits and talks with me first.  Then he always does an exam.  How many of your doctors examine you?  Maybe your GP?  My PM doctor or my previous orthopedic doctor who did my fusion never once examined my back.  They all rely on notes and x rays.  Focus, back to topic...he cares about everything else going on, not just my Fibromyalgia.  When we discussed my appointment with gastroenterologist he told me he liked the medication he wanted me to try.  ( I really appreciation his opinions whether I ask or not ) He was really concerned about that issue for me and asked me to come back 3 months instead of 6 so I could update him on the scope results and my decision about the Fibromyalgia medication I'm taking.

During his exam he had me do all kinds of things with my arm.  He conclusion was the bursitis was in my rotator cuff not my arm.  The arm is just where the pain refers to.  The good news, it's in place you just have some bursitis there.  Seriously?  So it just left one area of the arm to another.  I really just thought it was fibromyalgia pain.  He reminded me that for most people the pain level is one number but when you have fibromyalgia it amplifies.  He spent quite some time showing me what stretches to do and gave me a print out with instructions.  We decided I could do this on my own at home instead of returning to PT.

I talked to him about my medication not helping any longer.  He gave me the option of stopping.  Sometime when you have so many other things going on you think something isn't working but if you stop it you can tell it is helping.  He doesn't doubt it's not, but he suggests I get off and see how much different I feel.  The other option is to bump up to two and see if that helps.  Before I could get it out, (my concern of weight gain), he reminded me it put some more weight on me.  Yes, I know.  It already has.  Even though I've continued to stay on WW's it still creeped on.  I'm back to where I was when I started WW's. I had lost 8 pounds when I started the medication.  I can't imagine if I wouldn't have been following a diet where I'd be.  I like that he gives me options and he's truly honest with me on how "he" feels about it.  

I have a close friend who has dealt with elbow and shoulder pain.  I know she really understands where I'm coming from.  If I try and find the good in having the bursitis not leave but move to a different area it is that if I don't use my arm it doesn't hurt.  I wish it was that way with my back.  In some ways I think they are all tied together.  

On to some good things.   This makes week four of watching two of my grandchildren one day a week.  Even though we've never been very far apart life just keeps everyone busy.  For me, if I'm not busy, I'm recovering.  It's been nice to see them on a regular basis.  When P was born I tried really hard in the beginning to see him as often as possible.  I was still working at the time and it seemed to get harder and harder to get it done.  My daughter brought him to see us plenty of the time.  I can remember so many week ends longing to be with him but just couldn't pull myself out of bed to get in the car to go.  

Not only do I love spending the day with them it also makes me very happy to be helping my daughter and son in law.  It's so hard for mom's to go back to work at any age of their children's life.  I believe it's especially hard when you have to leave an infant or even a toddler especially if its not with family.  It's a long day for me, but worth every minute of it.
AJ is smiling at her big brother and he loves her so.  If I'm not sure where something is he can help me out for sure.

Hanging out with sista

2 week old angel


Five more days until my mom and I set sail for our caribbean getaway.  The closer it gets the more excited I am.  I usually get really nervous about leaving town any method of traveling.  One or two nights before I start thinking of all the reasons I shouldn't go or what could happen while I'm gone.  I've always been anxious about being away from my children.  Now I have my grandchildren I think about and miss. And then there is my baby at home, Dallas.  Of course I will worry about him.  We have a follow up appointment at the vet on Friday so at least I will have an update before I leave.

My mom and I have been off on a short trip together and a longer one with more of the family but never for this length of time just her and I.  We will have plenty of time to catch up, enjoy some great food, entertainment, soak up some sunshine and most importantly just relax. 

Weekend before last A was here for a visit.  She spent Friday night and Saturday with Poppa and Nonna.  On Saturday afternoon I brought her to have some spring pictures taken.  She loves to get dressed up.  After she was done she couldn't wait for her daddy to get there and see her in her beautiful dress and she didn't want to take it off to make sure Aunt B could see "how pretty" (her words) she was.  And I agree.  Take a look for yourself.

I hope to check back in before leaving on Sunday.  If for some reason I don't I will be around soon after to show off some pictures from our trip!  Enjoy the rest of the week.  We will return on the following Sunday.

Until we chat again....remember to have HOPE-Hold on Pain ends