Happy Spring

I can't tell you how happy I am to see spring arrive.  As I took a walk Saturday afternoon so many of my neighbors were out washing cars, planting flowers and freshening up their flower beds.  I love my neighborhood especially during this time.  The yards are green again.  Everyone is into having their yard look really nice.  The naked trees have green leaves again.  My birds are hanging around in the back yard.  (yes, they're my birds...the same ones return) The down side here in LA is spring is VERY short.  We'll probably enjoy another week or two of staying in the 80's then it will be full out HOT!  

This warm weather turning to hot weather has a plus.  We will open the pool next week.  Last year we were in by the end of April.  The walks have been so nice through the fall and winter but it's been hard to find the right time the last week or two.  Anytime I can I prefer to walk in the morning, but I'm slow to get moving (stiff and sore) so it's starting to be a little warm when I make it out.  My other favorite time was around 3 but it's definitely to warm now for that.  I'm sure your wondering so what's the big deal about it being hot?  I don't mind sweating a little but I'm learning being to hot and sweaty aggravates my hives even if I shower right away.  So you can understand my excitement of getting to swim laps and walk in the pool again!!

Tomorrow my first born, and April fools baby, will celebrate another birthday. She's such an awesome mom and wife.  What she lacks in cooking skills, she makes up in so many other ways.  She recently took my grandkids pictures herself for the first time.  AJ's NaNan went along to help.  I told her they are so beautiful that I just can't understand her ever paying anyone to take them again now that AJ is older.  She is crafty to the max, bakes, sews and works two different jobs.  In her free time (all moms know there is no such thing...it's time you find) she does photography on a professional level.  Needless to say like many mothers, I'm so proud of her.  

P and AJ

I've continued to meet twice a month with the crochet compassion group at the library.  It's amazing the people I've met and how everyone has something to give.  Some people just show up with bags they collected.  Some show up to work the two hours and their done.  We have one lady who is legally blind but she likes to sit unfold and smooth bags to get someone else started.  We have ladies who only like to do the prep work and some who only like to do the crocheting.  It all works well.  I myself like to do all steps, because I think I'd get board just doing the same steps all the time.  

I completed my first mat on March 3rd and I'm very close to completing my second.  Our next gathering is April 7th so I plan to have it ready for then to turn in.  The need is overwhelming.  As long as I have bags to work with I will keep on crocheting.  It takes approximately 550-600 bags and 18 hours to complete a mat.  

First completed mat with handle

5 mats turned in this day :-)

Speaking of the bags, I mentioned on an instagram post that I needed help by asking any of my followers if they could help me save some plastic bags.  ( I don't really have many followers, but it only took a couple )  A few people can do amazing things.  My daughter, my neighbor and a friend have been supplying me with a bag of bags on a weekly basis.  Then there is my friend who had an idea to ask on social media also.  She is on facebook and has a lot of followers so she got such a great response.  We were both so touched by how many people responded and wanted to help.  She has collected A LOT of bags for me. If I don't need any at the time, I bring to the meetings because not all of the newcomers have bags to get started.  Her help has been tremendous and very appreciated.  

The colorful one I'm working on now!

Health wise I'm doing ok.  No better, no worse, so I can't complain.  April will be my first 3 month recurring appointment with my new dermatologist. (mine of 20 years retired) She didn't actually due the surgery but I'm anxious for someone to look at the incision site again.  It's been painful in a nervy way.  It's still numb in some areas too.  The oncologist had told me that can happen with a small percentage of people and take up to 6 months to get better.  I'm doing the PT exercises, but it's still bothering me.  If that was all I was dealing with it really wouldn't be a big deal.  I've let it bug me because I just don't need an added irritation.  It is what it is though, so I'll deal with whatever the outcome. I'd rather deal with the discomfort than find out there is more (melanoma) somewhere else.

I also have an appointment with my pain management doctor in April.  What's so special you may ask?  The first time since 2010 that I've been able to go 6 months instead of every 3.  I'm grateful since I now have the dermatologist every 3 months instead of yearly.

Like every fibromyalgia patient I have good days and bad days.  When you have a good day you can hardly enjoy it because you feel like your crazy.  How can you feel so normal one day and feel pain everywhere in your body the next day? I've learned over the years what triggers it and to just be prepared.

My family knows I'm not likely to make commitments.  They know it takes a lot to keep me down so if I cancel or say no I know they understand.  I spent so much time worrying about what people would think if I said, " I don't feel well" or "I can't do it today".  You look fine to everyone, so your mind tricks you into believing your friends and family don't understand.  Give them a chance.  Send them information to read or share about something you saw on television.  Ask them to come to your appointment with you.  Support from people around you is absolutely critical in my opinion.  The last thing you need is guilt to deal with.  
I finished reading Killing Jesus after reading Killing Lincoln.  Sunday night the movie from Killing Jesus played on the NatGeo channel and broke records.  It will air again on Fox this Friday and again Sunday.  I'm on the waiting list to read Killing Paton next.  Lately I've been sharing some movies I've enjoyed so here are a few more.  All my opinions of course.

Whiplash: if you or your children are musically inclined you'll understand the passion of this movie.  If not, you may be bored or not get the plot.
The Best of me:  RENT THIS MOVIE if you didn't see it.  ( tissues needed) My pick, but my husband did not deny he like it!
Equalizer: great pick, but I'm a Denzel fan.  I love all his movies.  My favorite movie of all time is one of his.  Remember the Titians
LucY: save your money. (D's pick)  Dumb plot and slow...again my opinion

A at her last visit with her daddy

Happy Easter to all.
God Bless
Theresa

It's back

New Years day and my birthday

My holidays were anything but typical. A lot of my grandchildren were sick, my daughter and myself.  As I mentioned in my previous post I had a spot removed at my dermatologists request.  He felt pretty confidant it was nothing, but because it was in the same exact spot (on my scar from the 2011 melanoma) he wanted to shave it off and have the lab take a closer look.  I teased him about telling me it "was nothing" last time.    

My medicine I'm taking for the fibromyalgia since November seems to still be helping most of the time.  If it's just a typical day at home I feel as close to normal as I have in some time.  When I do go out for errands, shopping, watch my youngest grand baby etc. I still struggle with the same issues as the past.  The good part is that my pain seems to be at a lower level.  Leading up to Christmas I had some bad days where I took ibuprofen.  A couple of times I took more than a dose a day to keep in in control.  I didn't think anything of it because I'd mostly used acetaminophen 650 so I figured a little here and there wouldn't hurt anything. 

The Tuesday before Christmas Eve late in the evening I got a call from my dermatologist. When I saw Dermatology Clinic on the caller ID I knew if they were calling something was up.  If the biopsy is normal they just send you a notice by email or by the email portal through the clinic.  When I answered it was my dermatologist, not the nurse.  My stomach suddenly hurt.  It was malignant melanoma IN SITU.  The findings stated that given the history of melanoma in the site, a recurrence is favored.  This meant I needed to go back just like the first time and let him do a small incision and take more tissue around site.  We set that up for the 29th. The Monday before New Years.

2 days after.  My skin stayed irritated from the  dressing.

Just a little about melanoma stages for those who are not aware:

Stage 0-1 tumors/ 0 is localized and in situ which has not penetrated the surface of the skin.  This is when you want to catch it for best outcome.  I was asked to come back at 6 months then once a year (unless I see something) Stage 1 has invaded the skin at a slow rate and are small. 
Stage 2 tumors/ though localized are larger (1 to 2mm) and/or can be ulcerated and can be larger up to 4 mm.  The depth is as important as the size.
Stage 3 and 4 tumors have spread (metastasized) to other parts of the body.

In between that time I had a flare up with my back and I was having terrible stomach pains.  Christmas eve it was really bothering me but I didn't want to say anything to my husband because I was afraid he'd just feel it was stress from worrying about the upcoming results of new biopsy.  Some of my husbands family came for Christmas day.  I hope it didn't show for them, but it was an awful day for me.  My stomach kept me awake most of the night and I wasn't sure I could get through helping my husband finish cooking.  I did what I could and thank goodness they were very understanding to how I was feeling.  
That afternoon as soon as they left I went back to the couch where I'd been most of day. After an hour we decided I needed to go to the ER.  Something was definitely not right.

I was there from 5:30 to 11:30.  I must say they were on top of things and constantly working to get me comfortable.  Someone was always there either giving me something or taking me for lab or x ray.  I didn't spend a lot of down time with nothing happening.  In the end they found something to reduce my 10+ pain in my back.  A cocktail to drink to numb my stomach, and a shot of pepcid (yes, a shot...a real needle) to calm my stomach.  I guess the ibuprofen has been harder on me than I thought.  My gastritis is speaking volumes.

I'm still struggling with it.  Most days it's hurting.  I have no appetite and I'm nauseous.  I find something soothing to eat because I get weak if I don't.  The ER doctor asked me to go back and see my gastroenterologist if not better in a couple of days.  I have talked to them on the phone and they've changed a few things from what the ER doctor put me on.  I plan to go back in, but want to finish this melanoma fight first. 

This past Thursday evening I get another call from the Dermatology Clinic.  It's the dermatologist calling again.  When you hear the doctor on the line...not good right?
Right, it's not clear.  Melanoma still present.  Stage 2 but not really deep.  So that's good right?  I didn't find that out until today.  She set me up for today to get my stitches out and to an Oncology Surgeon she was referring me to for more invasive surgery in that area.  She made me aware that they sometime want to biopsy the closest lymph node to melanoma site.  My appointment with her went well.  She said I did an awesome job of caring for my incision.  Personally I think it looks terrible.  I'm sure it's because it was over the previous incision site.  

She decided she wanted to do a head to toe check while I was there.  She found two spots she was didn't like so "just because" there is a history now she shaved them and sent them off too.  When I saw the oncology surgeon he put my mind at ease a little.  He said my lymph nodes in armpits and neck felt normal. Due to the fact that the melanoma was at 0.5 depth (although still serious and dangerous) he is always more concerned about spreading with a 1-4mm depth.  He agreed with everything my dermatologist recommended including being checked every 3 months vs. yearly and that it is a recurring melanoma.  "For how long I do I have to do every 3 months?"  "For life" was his answer.

We decided together we'd schedule for two weeks instead of next week for the surgery.  He really wanted to have the results of the two biopsies from today so there wasn't any chance of having to go back again for another surgery.  So it's back to waiting again.  

I'm really not concerned.  I've studied melanoma a lot the first time I had it and have continued to read any articles I've discovered on it leading up to now.  I'm a proactive patient and go with my gut.  My gut brought me in at the first sign when many would have sat on it and watched for a while.  Love yourself enough if you have any fears of something wrong with your body/health to have it checked.  Don't every fill silly about knowing for certain if something is wrong or not. 

I'm counting down the months until this cold weather is over.  Especially damp cold days like today.  The fibromyalgia just amplifies everything.  I'm trying to hang in there without the pain medication but I'll tell you it's hard.  Many times over the last couple of weeks I told my husband it's just not worth it.  I'm stopping the new drug and going back to my narcotic.  At least I get some good relief for a few hours.  I've actually went back and reread my post about getting off of it to remind myself the down side to taking it.  Then a good day will happen again and you start to doubt yourself.  Am I crazy?  I know my regular FM and back pain suffers that read here know what I'm talking about.  You've let me know I'm not crazy and you experience the same.  

I really need to do better with writing more than just when I have news regarding my health.  As I've said in the past, I've really started to hate being on my computer.  

My youngest grandchild is turning 1 in 2 weeks.  It seems like just a few months ago we were at the hospital waiting for her arrival.  She is something else.  So sweet, yet so BAD.  She is her mother as a toddler.  She is really going to have some kind of personality.  Like both of my other grandchildren she has learned to sigh and definitely lets you know what she wants.  All of them keep me going.  They cause me to push myself and not let myself get to down.

Recently on an episode of 60 minutes a wise woman said, "the first 50 years are for learning and the second 50 are for living.  I'm ready for that....

Full of H.O.P.E. ( hold on pain ends )
Theresa

Handsome boy P

AJ with all her Minnie's

A in her Elsa hat Aunt B made for her :-)

A new plan

As I mentioned in my previous post I've made some decisions regarding my medications.  At my last visit with my rheumatologist he discussed a medicine with me that has new studies out to help with FM pain.  He asked me to go home and research and for some time I forgot about it.  When I did look it up I was disappointed in what I found because the drug seemed to be used for patients detoxing from high doses of narcotics.  At first I was kind of upset thinking he had the wrong idea about the amount of pain medication I take.  At one visit I remember him telling me that some time your pain medication can actually cause your pain to elevate if it is blocking another medication your taking.  Then it dawned on me that he said to make sure and research the medication along with FM pain.  Not just the drug name alone.

After researching this way I felt better about what I found and read.  There were several studies and some patient reviews also.  I can tell you I'm shocked at my own self for even trying this after trying 3 different drugs for FM treatment.  Then some years later trying the Lyrica again.  This was the second time I'd heard this information from  Dr. C and he is my favorite doctor of all of them and I don't think he'd recommend the drug if he didn't think I'd get some results from it, even if small.  The draw back is you cannot take it if you are taking a narcotic.  Which means I have to get off of my pain medication before I can even try it.  Just thinking about trying scared me to  death.  Everything I do revolves around my pain medication.  What time I go somewhere, when I try and exercise, when I do any house work.  I could go on and on.

Right about the time I was considering this option it was time for my 3 month check with my PM doctor.  I talked to him about it and he was pretty positive about the medication too.  I started to have a little hope.  We discussed what was involved and how long it would take.  He said if I wanted to do it the best way with the least withdrawals it would take about 2 months.  He said towards the end my pain would definitely increase for a period of time then it would level off.   A lot of patients who have taken a pain medication for a long period of time and get off find that if they make it through getting off they find their pain is not any worse than with it.  

So why would I do this then?  For a long period of time I've hated that I have to take pain medication to get through my day.  I hate the stigma that comes along with it.  I hate how long I've been on it.  I hate the side effects and the harm it's doing to my body long term.

My stimulator allowed me to cut back, but it doesn't work well enough alone.  I can't say "it won't hurt to try" because if you've ever had to come off of a medicine you need to taper off of (not just a narcotic) you know how sick it can make you.  If this other medication works for the FM then maybe, just maybe things will even out.  I'm ok with not being any worse.  Of course if it's Gods will that I get "real" relief then hooray.  If not, I'm thankful to not feel worse for stopping the pain medications.  

Back to our conversation....he asked me when I wanted to try and I told him that I'd like to get through the holidays then get started.   After a few weeks passed and my husband and I talked about it more I decided I was ready to get started.  Why wait?  Maybe I could be done and better by Christmas.  So I made the call last Thursday morning.  I had an attitude going into it because I'm always complaining about the staff at that office.  I really like my PM doctor but it is so hard to deal with his staff.  Once I get to the back and I'm with him it's all good.  I've threatened so many times to go somewhere else but it's just not that easy with my stimulator.  

The nurse called me back about 3 that afternoon.  I told her in detail what I wanted her to discuss with him for me.  I told her if she had any questions it should be in my notes from my last visit because we talked about it.  It was Thursday and he wouldn't be there Friday.  She told me not to expect a call until Monday or Tuesday.  So until Tuesday afternoon I was patient.  After that, I was annoyed.  So typical of this office.  I called Wednesday am and left a message in case they weren't aware it was approaching a week I'd first asked for a return call.  By 3 pm no call.  I called back and talked to the front office.  This lady was certainly honest.  She told me they get a complaint every day regarding this matter.  I asked her to leave my message personally to the doctor.  She also said she would inform the office manager of what happened. 

Today, still no call by 9 this morning.  I decided to reach outside the office for help.   It was a long shot, but I didn't care anymore this an important decision I'd made regarding my health and I felt like my doctor didn't care about ME at all.  I text Mr. R and asked him if he happened to be working with my doctor that day.  He called me an hour later and said he'd been in surgery all morning but not with my doctor.  Mr. R told me he had no problem texting my PM doctors nurse and mention that he was setting up an appointment with me for reprogramming (this was true) and I mentioned the issue going on with them getting back with me.  15 minutes later I received a call from the nurse.  "what can I help you with Ms. Theresa?", she asked me.  Are you really serious?  I left a detailed message with your co-worker (his other nurse) and a detailed message on your machine.  She said the other nurse was working at another office this week and she really didn't know what I needed.  As far as the message I left yesterday she looked in my chart and didn't see any notes about what I left the message about.  I started crying and the next thing I knew my doctor was on the phone with me.  My tears were real, but I'm here to tell you sometimes a few tears goes a long way.  Don't be afraid to cry :-)

I did have to jog his memory and he remembered our discussion.  We talked for about 15 minutes and he reminded me this wouldn't be easy either way I did it.  He said my dose was low enough I could just quit cold turkey but I'd be down and out sick for 2 weeks.  His exact words were "you'll feel like your dying" and I believe him.  Or...we stretch it out slowly over 6 weeks.  Same results but a lower levels each day.  I will be completely off in 2 months.  I'll be dealing with some intense pain he said but it should level off in a month or so to where I was when we started.  As soon as I'm completely off I can start taking the new medication.  I'm really anxious about this entire process.  Who can put there life on hold?

I plan to try and keep you informed on how it's going.  I hope to get through this without to much discomfort so I will feel like getting on my lap top and catching up.  You wouldn't believe the emails I need to check.  In October I have an appointment with Dr. C so I can get some encouragement from him if I need it.  He's going to be glad to hear I've made the choice to at least give the medication a try.  

Wish me well and thanks for listening.  I know some of my readers understand exactly where I am and what my experience will be like.  
Living with HOPE (hold on pain ends)
Theresa

Facing the truth

You've heard this before "Screaming on the inside, smiling on the outside", thats me.  These past couple of weeks some things have come to light.  Things deep in my heart that I know to be true but acting, away from this blog, they are fine.   I still believe one day I'm going to be typing on here about some solution to my pain that I or some medical genius has discovered.  

When I saw Dr. C last Friday he asked me to try the Limbrel again.   Why not try it once a day instead of twice and maybe it won't effect you the same?  We decided on pm in case the dizziness returned it may wear off while I'm in bed overnight.  I was game for that.  I'm desperate.   He also recommended I try adding some turmeric in my diet.  It had been brought to my attention by my friend who convinced me to try the gluten free.  So now my favorite Dr. is recommending so why not?  He told me to do some research and find the best way to use it.  Just adding it as a spice to my food would be helpful.  My friend however had encouraged me to go the smoothie route using the root form.  I found a recipe for making a tea with it.  Since I love herbal teas anyway I chose that option.  

I've had several really tough days where I could barely get out of bed.  I made it to the kitchen and hurt so bad from head to toe I was sick like with the flu.  I tried to figure it out like always.  For once I think  I finally did.  It was that nasty thing called "Fibromyalgia".  I'm finally starting to accept and understand how it works.  If I do something just a little bit out of my range it punishes me the following day.  This was very hard to manage being that I've pushed my limits for years.  

My psychologist changed my antidepressant last month.  Something that is supposed to help with anxiety and FM pain too.  I've really been beating myself up the last couple of weeks trying to figure out why I keep feeling so bad no matter what I do.  I've been Gluten Free for 2 months.  I'm drinking the turmeric tea, drinking ACV, back on the Limbrel, using my stimulator day and night, using multiple over the counter creams and wearing my patches again even though I argue they are too expensive and don't work.  I've been so angry.  At who?  Everyone who don't take care of their self and feel just fine.  I recently overheard a man talking about his grandfather and how he ate fatty meat, drank the hard stuff, smoked since he was a teenager, never exercised a day in his life, overweight and is still going strong at 90 something.  That's all I can seem to focus on.  Does he know how lucky he is?  Why am I doing everything right, but can't seem to get any better? 

Monday morning I decided to get aggressive with getting some relief.  I called my PM doctor, which means I left a message with the nurse, and pleaded to let me try an injection again.  I'm desperate.  A lot has changed since I've tired in the past.  I didn't get a return call until that evening and of course the doctor was already gone.  "I'll talk to him tomorrow"  Seriously?  Then she proceeded to inform me the next day they'd be in another town so I probably wouldn't hear back until Wednesday.  Oh, no problem.  I have the rest of my life.  Excuse my attitude but I'm so tired of dealing with the health care system.  Do you think I heard from them today?  No I didn't.  I was dealing with another doctor today so I didn't even call and complain.  Oh, but I will tomorrow morning.

I started thinking about how my pain increased around the time we changed my antidepressant medicine.  Could this have anything to do with it?  Again...I'm desperate.  I had to call for a refill on something the previous psychologist had me on and I didn't notice had 0 refills until I went to call in the refill.  I asked to talk to the doc since I was on the phone with them anyway.  The receptionist said she'd return my call as soon as possible.  Well, you know what my attitude was on that.  By the time my husband was home from work I hadn't heard from either doctor!  

Surprised, my psychologist called me around 6:15.  We started to talk and I had a complete melt down on the phone with her.  All my frustrations came out.  She pointed out to me that sometime an antidepressant helps with pain on such a small scale that you don't even realize it.  When we changed it it's possible that I had an increase in pain overall.  If it wasn't working as well on my anxiety too that could effect things.  This particular drug was supposed to target patients with FM pain.  

We decided together until I see her in two weeks to start back on what I was taking previously since I had some on hand.  If I notice my pain decreases a little we may increase the dosage on it.  If nothing changes she said we will try another she had in mind before we tried the one I started last month.  She wanted to review my genetic testing again before making any final decisions.  I'm ok with her decisions.  At least I feel like something is being done.  I'm scared of "no" change more than "change"  at this time.  It has to get better than this.  I've come to far and tired so many things.  

As far as my PM doctor I'll be calling them again tomorrow.  It's terrible that two months in a row I've not been able to get them to return my call.  I'd love to get out of his practice.  I like him and the doctor I saw there before he did my implant but they have become this huge practice that hustle people in and out like cattle.  They go to a different town every day.  My fear is where will I go? No other PM doctor will want to treat another doctors SCS patient.  

It's also time to see Mr. R.  The 16 programs I have, have been good to me.  I was only using a few, but they kept changing every few weeks.  Now I can't seem to get one to keep me comfortable.  I was putting off until I got some of these other issues resolved but it can't wait now.  For his sake...I hope he's reachable.  

I'm just so tired of feeling bad.  I can come here and complain all I want and not feel bad about it.  I'm sorry to say that beside a few family members ( like my daughter  and my husband ) I've pretty much shut everyone else out.  Just because...I have nothing nice to say right now.  I'm pretty good at faking it but I just can't right now.  I'm so tired, so worn.  A close friend left me a message last week and said she was sorry for being a bad friend and not checking on me.  She asked me to call her back so we could catch up and I feel awful that I haven't.  She's not the bad friend, I am.

I guess that's enough venting.  No sleep doesn't help things either.  I want to try and stay with my closing I've been using.  Having HOPE.  ( Hold on pain ends)  My hands are slipping.... It's so hard right now.  

Holding on tightly.....gentle hugs
Theresa

Time for a Change

In past years I've been very successful with following the WW's plan.  I've always met my goal weight and kept it off for a good period of time.  Things like medications and pain restricting my exercise for periods of time let me slowly gain it back.   My latest issue has been a medication I was taking for the fibromyalgia.  I've been off since the beginning of April but I'm in a rut.  I'm stuck on weight I started at back when I started WW's in the fall.  I was 2 pounds from my goal weight when I started the medication and slowly climbed up to where I started and stayed there every since.

I've taken into a lot of factors.  I've increased the dosage of my antidepressant from 20 to 40 ( under advise of my psychologist ).  She said the increase could also be effecting my weight.  I'm also aware that the older you get the harder it becomes to loose weight.  It's always been pretty easy for me.  I have a lot of will power so sticking to the plan has been easy.  So imagine being super strict and you get NO results.  

One thing I'm really thrilled about is I've been back in the pool now for two weeks.  The water temp has been awesome.  I've started slow with walking first.  This week I did some water jogging.  Increasing time a little each day.  It's just unbelievable how my back pain just disappears when I step into the pool.  With that in mind I have to really be careful.  I did a lot of stretching the first day and I was so so sore the following day.   

Speaking of stretching, the bursitis in my shoulder has greatly improved since I've been getting in the pool.  It's really hard to do the PT stretches they asked of me.  I'm a very compliant patient because I want to be better.  However, sometime it's just so painful I cheat and cut the reps or time I spend.  In the pool I've been able to do it mostly pain free.

Back to my title "time for a change".  What am I planning?  I've been doing a lot of research on becoming gluten free.  One of the things that attracts me to the idea more than weight loss it is really supposed to help with inflammation.  I've tried so many things to help with that.  Inflammation is one of my biggest culprits.  In my research I read you loose weight also.  If that happens, great.  My biggest hope it that I will just feel better.  I'll take 50% better.  The fibromyalgia has really had me beat.  

Here is my plan...I have a book I plan to pick up and hopefully read before the end of month.  ( saw on Dr. Oz )  Continue to research what I can and can't have.  I want to slowly start buying the things I need a little at a time.   My WW's plan ends at the end of the month and I hopefully will be ready to get started on a Gluten Free diet.  I figure even if it doesn't work for my pain maybe I will loose a few pounds.  If I don't loose any weight but start to feel better that would be the BEST outcome.   

I have a friend who is gluten free that I spent some time with this past week end and she was in a car accident a while back.  Days later she started having a lot of neck pain.  After getting checked out at the doctor she discovered she had to bulging discs in her neck.  A period of time when by when she couldn't get the pain level down with PT and home care and they put her on pain medication.  She is a health nut so that didn't go over well.  Even though she was hurting bad enough to take it she told me there was not way she was just going to continue to take it and mask the pain.  Like me, she could tell she had a lot of inflammation in the area.  That's how she got started.  Within a couple of weeks she didn't need the pain medicine at all and she's feeling so much better overall.  

I'll share with you two things I've started doing as a "pre prep" to start some healthy habits.

1)Some time back I mentioned my new obsession with coconut oil.  I've been using in cooking, popping homemade popcorn and baking.  I knew about benefits of using as a replacement for other fats and  a lot of uses for it.  What I'd never looked at was the benefits of ingesting coconut oil.  There are plenty I could tell you about but if your interested just goggle.  It's all there.  

I mentioned to my friend and she said she put in her coffee every morning.  That was one of the ways I read about.  I gave it a try and I loved it.  There is an adjustment for a few cups because you can SEE the oil.  I loved it though because it made my lips so moisturized.  I usually put powder creamer in my coffee but read it helps to use milk ( I don't like anything cold in my coffee) and it helps make it creamer.  The second cup I used a little almond milk in place of the creamer.  I use unsweetened vanilla almond milk so it didn't add any sweetness to the coffee.  It's a new and exciting thing at breakfast!  

2)She also told me about the benefits of Apple Cider Vinegar.  Another that there are plenty of....but like the coconut oil ingestion google it.  I dont' mind sharing but don't want to keep this post going on and on.  The main one I tried is for detox.  As part of balancing the body's PH apple cider vinegar creates an overall detoxification of the body.  Research shows that it can help stimulate cardiovascular circulation and help detoxify the liver.  

Another that caught my eye the aid in weight loss.  For daily weight management add 2 teaspoons of apple cider vinegar to 16 oz of water.   You can sip throughout the day or just drink all at once.  I added juice from half a lemon to cut down on the acidic taste.  With that added it tasted like lemon water with a taste of apple.  Enjoyable and good for you.  I drink two glasses of lemon water a day anyway so it wasn't like I really had to make a big change with this one.  

I'm hoping trying gluten free may help my hives go away.  I must say it's been the best year ever for the reduction of appearances.  Unfortunately, they've still been around.  Especially on days when my pain level is up or I'm having some really bad break though pain.  The week after returning from the cruise was the worst flare up I'd had all year.  In reading the benefits of the Apple Cider Vinegar it didn't mention hives ( at least on the sties I viewed )
but it did talk about the benefits if you have allergies.  I'm always hopeful.

I could use to see Mr. R for an adjustment but I have several programs that I'm really pleased with.  I seldom turn it off anymore.  When I go to bed I just turn it down really low.  In the first year I'd try that but it would wake me up when it would come on and off.  I think because it's in a better place now it's more comforting than disturbing.  I'm having to charge my battery every couple of weeks.  A huge difference from the first year to year and a half.

I have a follower who recently had a SCS implanted.  I started following her blog and I hear myself in her writing in the beginning months after surgery.  ( She's a better writer and much more positive)  I'd just like to say to her not to be to discouraged in the first year.  I'm sure your doctors have told you but the longer you heal the less movement you get in the stimulation.  It also means you have to have less frequent adjustments.  Both of my scars are still tender to some degree.  The area in my spine where the paddle leads are placed always stays somewhat sore.  There is a little "connecter so to speak" that sends the leads out to the IPG (battery) and it's like a bump or knot in the lower back area of my spine.  Some days if I lean against something hard it reminds me it's there.  

As far as my battery site I've excepted it is what it is.  The revision surgery we did a year ago helped so much.  A smaller battery and going deeper helped it to not protrude so much so it's less sensitive.  I still need a cushion everywhere I go but I'll take that any day over a wheel chair.  I remain certain I made the right decision in having a Spinal Cord Stimulator placed.   My pain is still there but the stimulator does help relieve it and help me from taking the amount of pain medication I once needed.  

Dallas is doing amazing.  He had a successful surgery.  They completely removed the tumor and stalk that was attached to it.  There were three arteries coming from the stalk.  She cut and tied all off.  That is where all the bleeding was coming from.  This past Monday he had his stitches removed and seems almost fully healed.  He came a long way from having 3 months to live to a surprising recovery.  The lab results showed the tumor to be something called Eosinophilic cystitis.  Very rare but the few number of cases they've seen has been with dogs that previously had a bladder stone.  Yeah, we're so happy he'll be around some time longer.  

If you have any advice or tips for me on my plan to move gluten free, I welcome it.  I'm pretty nervous about being prepared.  Not about "what will I eat" but will "I have what I need?".  I've found a great web site to refer to and my gluten free friend has told me of several sites that will be helpful to me.  Wish me luck.  As with this and my daily struggle of coping with chronic pain I have H.O.P.E.

Happy Mothers day !!

Gentle Hugs, Theresa

My son and A

Poppa & Nonna at AJ's dedication day

The whole gang

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. 
Theresa

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

smiling

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