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.

Monday, December 22, 2014

In Honor of our protectors

My heart has been hurting so much for the two police officers killed Saturday afternoon. 
They were on duty, in their car and never had a chance.  A crazy mad person who had a long criminal record approached their car, fired multiple shots and killed them.  This sick individual had shot his girlfriend earlier that morning and made it known through an instagram post what his next mission was.  This is what it said...

"I'm putting wings on the pigs today." "They take 1 of ours....Lets's take 2 of theirs, ending with "this may be my final post" #EricGarner #MichaelBrown #shootthepolice

I am so outraged.  These officers were working overtime as part of an anti-terrorism drill.
Being a police officer is a volunteer career.  I believe it's a calling.  Who in their right mind wants to leave their family every day and not know if they will return home or not? 
Sure, that's a risk for us all in this day and age, but we're not going out and intentionally put our life on the line for the American people. of the free.  The land where we have the right to protest something we believe is wrong or right.  No other country would allow us to do that.  Because of that right the police have been protecting protesters even though they were chanting "shoot the police".  Do you think you could do that?  My heart has been breaking for them since the beginning of this terrible terrible nightmare that started in August.  

Where would we be if no one wanted to be a police officer.  Who would protect us?  This brings up something else that makes me angry.  How can they protect us when everyone has available to them the same weapons that they carry to protect us.  They are being used to kill the very people who provide protection for us.  

Rafael Ramos was 40 years old with 2 sons.  They are left to grow up without their father.  His 13 year old son posted several posts today on his Facebook page that are so moving.  The Ramos family came out and spoke to the public today and said they forgive the killer because thats the kind of man Rafael Ramos was and that's what he would have wanted.  

Wenjian Liu was a newlywed of only two months.  He had served seven years on the force.
I heard a conversation on FOX News today from one of the broadcasters regarding Mr. Liu.  It was a story about him stopping by somewhere on his home one day when he was still in training and some friends asked him why he wanted to be a cop?  He said, " because you don't want to do it, a lot of people don't want to do it.  If no one does, how can we keep the people safe.  Someone has to do it, so I will."  

It's been said that Officer Liu & Officer Ramos never had the opportunity to draw weapons. They probably never saw their assailant.  We need to stand up for our police officers.  They get paid very little and have such an important job.  I've had a bad experience with an officer before but I'm not disrespectful to them because of it.   Four officers have suffered minor injuries in scuffles with protestors.  Two were attacked on the Brooklyn Bridge a week ago.  Still they have to go and protect the very people who are rioting against them.  What's wrong with our world?  

 I can't tell you how passionate I am about this.  You don't see people who support the NYPD out in the streets protesting now.  There is nothing but calm and an entire side walk filled with flowers and candles in honor of the fallen officers.  I'm praying for both of their families and urge you to do so too.  I've felt so helpless.  I have a voice so I'm using it.  I live where we have freedom of speech, so I'm speaking it.  

Teach your children to respect authority.  If the situation is bad,  just go with it and if your innocent it will work out.  Know your kids friends and where they are.  It starts in the home.  As I read about many of the thugs who kill cops and their own kind  I  find they have been living on the streets.  If they do have a home, they have one parent and it's usually a mother working two jobs to survive.  It's going to come to cops being hesitant to feeling safe to do their job due to these past acts of rioting and luting.  Innocent business owners losing their business that they spent years building up.   If they can't do their job where will we be?

RIP to everyone who has died in this unsettling battle of blacks vs cops.  Blacks believing cops hunt them down.  *Shame on ALL the hollywood stars and athletics who used that status to sing about bad cops and how "they ain't gonna stop til there people are free, go on national tv with their hands up when they obviously don't know the truth and wearing shirts to promote more uproar instead of calling for peace.  Let me fill you in....your people have been free.  Stop crying about it and act like educated, respectful, free people you could be.  

Praying for Peace and living with H.O.P.E.

*Samuel L Jackson
*LeBron James
*St. Louis Rams football players

Thursday, December 18, 2014

A lot to be Thankful for

Here we are a little over a month later from my last post.  I always have good intentions to blog, but getting on my computer has not been a priority.  Even though there are many holiday things I should or could be doing I've made me the priority.  Many days I've been resting or reading and thought I should update my readers and let them know how I'm doing.  Finally, here I am.

I saw my rheumatologist a week ago Monday.  On that day I had started the medication he recommended just 3 days before. To soon to tell anything yet.  I was shocked to hear him say that patients who have never been on an opioid have a higher percentage rate of it working.  What?  Now you tell me.  I'm always in that low percentage so I didn't like hearing this.  Never the less, I'm thrilled to no longer be taking the pain medication.  I'm at the point that every day that is a "normal" day my pain scale is level all day.  It never decreases, only increases with activity.  I can live with this much better than the highs and lows of the way narcotics effect you.  If this new medication will help my FM pain I will feel really good about the place I'm in right now.

The first Monday of December I saw my therapist and asked her if I could taper off of my antidepressant.  I really expected her to say no.  What I was taking is also good for anxiety so I didn't think she'd go for it.  At the end of our session she told me it was obvious to her that I was still hurting but she saw many differences.  The tone in my voice, the sound of hope, and some smiles.  (Geez, didn't realize I never smiled)  She said, "YES".  Woo hoo another one bites the dust. ( pills ).  I've been off it for 11 days.  So far so good.

I really believe everything I've been trying in the past and taking now was not helping because of the narcotic.  Last week I had a particular day that was tough for me.  That night I had hives by the time I went to bed on my arm on my hip on same side.  The next day I was down most of the day.  Sore muscles, nerve spasms in most of the FM tender points.  The good news is that I seem to be having fewer of these days.  If I'm at home and don't over exert myself with something out of my normal routine I can say I'm doing better.  Again, the day to day pain has been so much more manageable than before.  I know this is it.  This is my life.  I think part of dealing with it better is that I no longer have any idea of what "normal" feels like.  You don't miss what you don't remember.  I have no clue what it would feel like to wake up and feel well.  

I'm still walking as often as I can.  If you suffer from back pain and you can manage to get started it will be so beneficial for you.  If you don't do something to continue to strengthen it, it just gets weaker.  Does that mean it's chance.  I really do a lot of "I can do it" chanting and I listen to Christian music while I walk.  It has become therapy mentally and physically for me.  I get a natural "high" when I make it to the finish line.  It must be something like that for runners.  It is a big challenge, and you should take it on.  It is so worth the time you put into it.  Stretching after it must, so it adds a little more time.   If your going to do it, do it right so you really do some good.  I feel the best I feel all day for the first hour after my walk.  Web MD has some great stretches for people with lower back pain.  Do's and don'ts.  You have to make sure they are ok for your particular case.  

So what am I up to right now?  I'm recently obsessed with The O'Reilly Factor.  I've learned more about politics since the Michael Brown shooting than I've learned in my adult life.  Not to mention all the other things going on in this INSANE crazy world we live in.  

I'm making a reading list.  All of a sudden there are a lot of new books out I want to read.  Also some new music I'm interested in.  I'm not stressing out about Christmas.  What I get done, I will.  What I don't, I'm really not that concerned about it.  That's unusual for me.  

Going to the movie theater is not big on my list.  To hard to sit through the movie.  I'd love to see the Hobbit (The Battle of the Five Armies) and the theater.  If I go once a year that's a lot for me so I'm challenging myself.  There are some movies you just need to see on the big screen.  Last night my husband and I watched "When the Game Stands Tall"
It was awesome and I highly recommend it.  It's based on a true story.

What am I excited about.....what else? The Celebrity Apprentice is BACK! Jan 4.  A great cast of celebrities.  The only thing that makes up for the end of DWTS.
Alfonso was my pick from the beginning.  I was so happy for him.  Everyone in the final four was great though.  All deserving.  

Tomorrow will be two weeks on the new medication.  I really want to believe it's helping.  Time will tell.  Oh and one more thing.  I found some research that links hives with FM.  I've been doing a lot of trials of getting off of things to see if that was the cause.  I really believe I've found my answer, which is, they are not going anywhere.  Monday I had to have a biopsy for a spot on my arm and it just so happened that the other arm had several hives out.  I discussed with my dermatologist once more and showed him some pictures so he could see how many more I have at one time these days.  Not to mention the size of them seems to have increased.  He gently told me after this long I can't count on one thing, they are here to stay.  The good news is that studies have found that sometime in your 60's you "outgrow" them.  Such a hilarious term.  I'll be 50 in a few weeks. 10 down 10 to go.  Something to look forward to.

Wishing everyone a very Merry Christmas and a safe and fun New Year.

The joy in my heart
Thanksgiving day

Monday, November 10, 2014


After what seemed a life time ( reality..2months) I'm finally free of pain medication running my life.  It's true, it did.  Everything I did was planned around when or how long ago I'd taken my pain medication.  It was never questionable.  If it had worn off, and wasn't time for my next one, I couldn't do it.   I don't regret having to take it as long as I did but I do regret that my doctor didn't encourage me sooner to see what would happen if I stopped taking it.

My rheumatologist had mentioned in the past when I would complain about the various FM drugs I've tried not working that it could be the narcotic blocking it.  No pressure, just information.  You never could have convinced me that I could function without it.  

Wednesday will be one week completely free from a pill doing me more harm than good.  I think each two week step down was just as, if not harder than,  the first 3 days of being totally off.   

Wednesday:  I awake thinking OMG how am I going to get through this day?  Nothing for relief.  I AM NOT a bed person.  How in the world will I manage?  No NSAIDS allowed.

Text message from my husband: How u doin?
Me: Brave of you to ask.....then a list of complaints 
Him: no, your brave!

 My first accomplishment was to take a walk, which I done 43 out of the 58 days I've been on this journey.  During the summer I was swimming and walking in the pool for exercise.  Don't get me wrong,  this is excellent exercise.  Everyday that I was in there I was praising God we were fortune enough to work out a way to have a pool for me to exercise in.  All of my doctors have said, "KEEP MOVING".  Walking was a different story.  I had slowly worked up to walking short distances after my first stimulator surgery.   Several months later I was walking a little over a mile and increased to a good pace for me.  After I had the revision surgery a year later as soon as the doctor gave me the ok I got back to it once
more.  This time I couldn't keep with it.  I couldn't walk through the pain.   I stuck to swimming, walking, PT stretchs in the pool and riding my recumbent bike for exercise.  

A week before I started the tapering I made up my mind that I was going to walk it out no matter what.  10 minutes, 20 minutes, whatever I could do was better than staying inside and fighting this battle with no other help.  Once I made up my mind I was able to do it.  I had to do it right away or I'd let the pain take over my mind and win.  After the walk I did a 25 minute stretch routine that consisted of all the back and core strengthening exercises that my physical therapist taught me.  It took and is still taking commitment to get it done. If I had an appointment I got up early enough to do beforehand.  I knew that if I could get my back a little stronger would help me in the end of this process. 

Thursday:  Each day will be a little better.  Not day 2 was worse than day one. 
During the time of day that I usually took my pain medicine my body was screaming at me. My back hurt so bad.  I just couldn't imagine how this was going to work.  I reminded my self I trust my doctor.  Why would he just torture me for nothing.

Text message from my daughter: How r u?
Me: A bunch of nonsense about how it has to get better than this : < (   A comment my PM doctor said to me on Monday when I saw him. ( you'll find after about 2 months your pain will level off to a lower degree and mostly stay the same.  90% of people find they feel so much better in the end)  I go on with my nonsense to text, " he obviously forgot I live in the 10%". 
Her: Well you've had victory with every other med step you've taken so we'll believe you will here too!! Take it easy.

doing a lot of soaks with this
It's that kind of support that helped me through some though days.  There are very few people who understand what I've been through I have many who care.  Even some of my readers have checked on me.  Thank you, it means the world to me to know you understand and support me.  

Unfortunately when Friday rolled around I had an added discomfort jump on board.  It started as a flaming throat and nose.  At first I just thought it was allergy but by Sunday it involved my ears and chest.  I feel like an moose is sitting on my chest.  I'm hanging in there since I have a doctor appointment Wednesday anyway.   Of course my old friend "the hives" have been lurking around just to make thinks a little more uncomfortable.  A few days I didn't have any but most days I had at least one and at most four.

I hate these buggers :-(

They'll never leave me!

I've been out very little ( besides my walk ) A trip to the fruit stand, very close to my house.  Saturday evening went to eat at some friends house and watch the LSU-BAMA game.  I really wanted to get out of the house and knew my friend would keep me laughing which would be so good for me.  I was right about that too.  I was happy to see my husband getting to watch the game with friends.  We used to always do something for the game but this season we've been right here.  Today I tackled getting gas and going inside Wally World for a few things.   I can tell you I've spent quite a bit of time soaking in the tub but it really helps.  

In conclusion I feel like when this allergy/sinus issue is better I can really tell how I'm feeling.  I feel like my back is getting stronger and when it does start to hurt from activity it's a totally different pain.  There is a constant "soreness" more than "pain" from the start of day that turns into a medium grade pain.  When I'm over this I can't wait to see how I really feel.  I'm quite surprised at how my back felt today and praying it continues and is real.  I guess what I mean is sometime when something else is hurting you can put your chronic pain at the bottom.  I'm not saying this a good situation but just how it can be.  I plan to update you in a couple of weeks to let you know how I feeling.  For the first time in a long time, I'm looking forward to each coming day.  

Live in Peace not in pieces
Iylana Vanzant

My big princess

P on his 5th birthday

My little princess

Thursday, October 9, 2014

Where I am

Here I am 6 weeks into tapering off of pain medication.  I'ts going better than I thought it would.  My latest step down brought me to one half in am, one fourth one forth in afternoon and bedtime.

Initially I was taking 2.5.  One in morning, one again when I just couldn't take it any longer. (Anywhere from 2-4 pm depending on what I had to do that day) and 3-4 days a week a half at bedtime.

My first adjustment was one half three times a day.  After a week of that I was feeling like stepping down was for the birds and to slow for me. I decided to stop taking bedtime dose completely,  then stop taking afternoon.  NOT.  Two nights in a row of no sleep at all put me back on the half at night for a couple nights then I moved to a quarter at night for two weeks.

During this time I had a conversation with my pharmacist and she really encouraged me to take it slow.  I heard everything my doctor said.  It's not about the amount you were taking.  It's about how long you've been taking it.  She said the minor withdrawals I was experiencing will be much worse if I just skipped doses instead of tapering slowly.   The rebound period will be more intense after if I didn't take it slowly. 

I just wanted it to be over.  However, I took her advise and stuck with the plan.
My next move was half, half, quarter.  Two weeks later half, quarter, quarter.  Next week I will move to quarter three times a day. 

Funny thing is even though I have my hives flaring up right now, fatigue, night sweats and brain zaps,  it's not so bad.  Pain wise I mean.  As far as my back.  What you find, at least for me, after a couple days the half works the same as a whole.  It lowers my pain number to the same and wears off at the same time.  Same when I moved to the quarter.  It takes a couple of days but you adjust.  I'm understanding how it doesn't just relieve pain but makes you body dependant on it.  I've always understood the difference between addiction and your system being dependant, but now I'm experiencing it for real. 

I have more faith than I ever had in the last 6 years that some parts may get better. The ultimate goal is to have my stimulator give me enough relief to not need any narcotic and find a medication that WORKS for the fibromyalgia.  It's been long enough to stop dwelling on why I have to live with this.  It's about keeping myself comfortable in the safest way possible. 

I had to stop by my psychologists office to pick up some samples last week.  She happened to see me at front office and asked how I was.  I explained where I was in tapering off the pain medicine.  I shared with her my thoughts of how even though my pain increases at some times of the day it hasn't effected my mood.  In fact, I seem to be in a better mood than usual.  She wasn't at all surprised to here me say that.  They are downers, that's a down side she explained.  They can make you moody and depressed.  I'm now wanting to believe that if I can get off completely and the other drug my rheumatologist wants me to take for my FM works the depression will be better. 

Nothing wrong with being hopeful.  I've been hoping for years with each coming appointment something would change.  I'm just a little impatient getting to that point.  Some days the FM is worse than my back.  I saw my rheumatologist last week and he said I need to be off the pain meds for two full weeks before starting the new medicine.  (It takes that long to be completely out of your system) This will be the toughest part.  Nothing to help with pain and the withdrawals I will experience.  I have to believe it will be worth it.

I picked up a prescription and the pharmacist asked how I was doing. I let her know where I am and how it was going.  She gave me a huge boost of encouragement and some advise on what to do after I complete this last step down.  It felt so good to get some encouragement.  It's been hard, but I feel so positive about it.

Hanging in there full of H.O.P.E.

Thursday, September 4, 2014

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)

Sunday, August 31, 2014


We've all heard about many movie stars taking their own life.  Leaving behind grieving family, friends and fans.  We commonly think, Wow...they had it all.  What could possibly cause someone to want to take their own life?  I have to say none have effected me the way the death of Robin Williams did.  There are many differences between his life, mine and others who suffer from depression.  One being how famous he was and the fact he made people laugh for a living.  Oddly, though his life was different, we shared something in common.

Watching one of the many tributes to him on different television shows a clip was shown from an interview back some years ago when he had just been released from rehab.  He talked about how this "voice" somehow always creeped back in to convince him he was not ok.  That he was not happy no matter how grand his life appeared.  It was a dark place.  

He spent many years hiding his depression.  I'm sure the alcohol was his go to drug to feel better.  I know many people are thinking how could someone so comical, who brought people to tears with laughter, be sad?  It's an evil thing that eats at you and as hard as you try and fight it, it seems to win over all the time.   After hearing that it really hit home for me.  I have my break downs in front of people sometime.  I think most believe it's my sensitive  or defensive side.   At home, it's different.  I am different.  I don't have to put on a show or pretend on a grand scale so no one worries.  I prefer to be alone and I've always thought it was ok until I understood I had depression.  

A little "voice" eats at me all the time.  It's always trying to convince me I have nothing to be happy about.  That my life stinks and will never get better.  I have plenty of friends who check on me now and again.  I love my family and know they love, pray and care about me.  When your battling depression, it's just not enough sometime.  I've never thought about taking my life.  However, I often think of what it would be like to be "normal" again.  Whatever normal is?  I really don't even know anymore.   I've asked myself, "how much worse can it get? How much more can I take?" I never have an answer, but fight to convince myself it's a blessing from God everyday that we're here.  Pain and depression.  Deal with it.  It really could be worse.  

I prefer to be alone, than with a group of people.  Why?  Because then I don't have to pretend I'm happy and everything is hunky dory.  I can't tell you how often I cry on my ride home.  I hold it in as long as I can, then it just flows out.  As much as I hate it, I think it's important to not hold it back.  I hate being fake.  I want to "really" be happy.  That evil little "voice" convinces me every time that everyone else's life is better.  I really know that is not true.  I can name so many things to be joyful about.  As hard and as deep as I dig I can't do it.  I try to constantly pray about them and not dwell on the pain and depression.  Somehow the depression wins over every time though.  

It's critical that you don't deny your depressed.  It's like any other disease or addition.  You have to own up to it and get help.  You have to keep fighting.  Sometimes I feel like I will be on antidepressants for the rest of my life.  I've tried to get off and it's just a nightmare.  If that's what it takes to keep on going I've accepted that.  I don't like it, but it is what it is.  

If your battling depression remember your not alone.  There is so many resources to help you.  It's important to fight that little voice telling you you can't beat it.  Go where you have to go even if your dreading it.  It's therapy and you don't know it.  Seek professional help.  If you don't like the first person you see, try another.  You may think it's not helping.  I still to this day think it's not helping, but don't want to know what it would be like if I wasn't going.

I've made some decisions on my medications choices working carefully with my doctor.  I'll tell you about that on my next post.  I know,  your thinking ...hum next month?  It won't be.  I'll will be home a lot more over the next month because of some of these changes I'm making.  I will be updating as well after I get started.  I have this small list of things I want to share.  It's not that I don't have things to write about.  It's about being comfortable sitting for a period of time with my computer.  Writing here is just like avoiding conversations with friends.  I have make myself open up and share.  

FYI; I'm slowly using up my GF food in my home.  After 3 months I haven't felt any better.  Last week end we celebrated my granddaughters 5th birthday and I have a piece of birthday cake and ice cream.  I haven't had anything like cake for months.  It had no effect on me at all.  As I've slowly added back in regular foods I haven't noticed any difference either.   I don't regret trying.  I baked and made some new recipes I probably never would have tried if not.  At least now I know.  Another wishful thinking.

Enjoy your Labor Day

"A" celebrating #5

AJ one happy baby

P on his first day of K4

Some movies we recently enjoyed you might want to see if you haven't

1) Silver Lining playbook
2) Noah
3) Three Days to Kill

Friday, July 18, 2014

In sickness and in health

I hope everyone who reads my blog that is dealing with some sort of illness whatever it may be has a support system.  There are a lot of things out there to help you.  Like books, blogs, support groups, friends or maybe it's your spouse.  Your spouse knows you like no one else.  I mean, what your really like behind closed doors. Let's face it, I can only hold it together for so long in a day.  Before I rattle on to much I want to point out I never mean for him to be the one to get all the punches. I'm not the same person he married. 

Our story is sort of a Prince Charming-Cinderella story.  I really don't want to get into my first marriage of 17 years to deeply but I have to point out that neither of us were happy for a lot of those years.  We loved our children so dearly and that was the most we had in common.  In the end I was just starting to have some minor trouble with my back.  

When I met my husband I was not looking for anyone to date.  All my focus needed to be on supporting my kids the best way I knew how. Keeping them in our home was so important so we'd have a roof over our head.  A female acquaintance asked me to have one date with him.  I didn't think there was anyway I'd do a second date with him but I'd agreed to the first.  We had nothing in common. I was just getting this girl off my back about it.  I was so much against the date I met him somewhere.  I was thinking I didn't want him to know where I lived if it didn't go well.  (he already knew where I worked because that's where we met)  

To my surprise the date was wonderful.  In one night, he said more things I'd dreamed of someone saying to me or doing for me in the 17 years I was married.  Even dating in high school.  I always seemed to pick the guys who felt it wasn't necessary to do or say anything polite or respectful.  I remember a date or two thinking "when is he going to stop acting so nice?"  He mentioned one night how much I talked about my kids.  I thought, well it's good you know how much they mean to me because they are my priority right now. 

Time went on and we dated for four years.  His kindness and the way he treated me stayed the same.  Every week end it felt like our first date.  He continued to open my door, say how nice I looked, sent me flowers (a lot) and much more.  For years I'd dreamed of what it must feel like to be treated that way and I was living it. 

Over time as my condition started to get worse he was right by my side at every appointment I went to.  Every test.  Every injection.  Every decision we made together. He missed more time off work for me than for himself.  I complained constantly about no answers and all the things that we'd planned to do together over the next few years and that seemed impossible now. 

I'm starting to believe that I met him for a different reason than I'd thought for years.  I'd dreamed of having a man like him love me but then everything changed after we were finally married.  It was almost 5 years to our first meeting.   My pain and illnesses turned me into a different person.  I am NOT the person he married.  You know the old saying, God doesn't always answer our prayers the way we want.  I believed he did put our chance meeting in place but I know it was for a different reason.  Not many men could put up with me when I'm hurting at the levels I am sometime.  

Many times I've said to him "I wish I could be the person you married".  I want it for him, as much as for me.  I've been so angry that he came into my life then I had to deal with this cross I'm carrying.  Ugh....Why why why?  Make it better.  I'm always full of questions and either crying or mad.  Mad as you know what.  He's remains the same.  Calm and cool and trying to keep me positive.  His answer remains the same.  He says, "in sickness and in health" and I mean it.  That even makes me mad.  Why can't he get mad too? I don't understand it.  How can he just accept it.  He'd never married and waited a long time as I for true love.

I thought for a long time that it's because he really couldn't possibly understand how bad I hurt at times.  If he did, he couldn't just be so calm and act like it will all be good in time.  God put him in my life for a reason.  Not the one I thought for a long time but he knew D was the man to be able to handle me and support me at the same time.  This brings me to an article he sent me recently.  He put in the subject line "A good read".  

He sends me a lot of emails.  So many that sometime I just ask him, what is _______ about?  I don't have time to read it.  This one caught my attention and as I read I thought this must be how he feels.  This is why he puts up with me.  He's told me as much.  It's about a man having a conversation with a stranger he meets.  The conversation of divorce.  I'll let you read for yourself.

If the link does not work, I apologize I'm not to good at that kind of thing.  I would ask you to go to his blog "sunny skyz" and the post date is May 30th. I'm also putting on my goole+ page if that makes it easier.   Interesting read as my husband said.  Every married couple should read it.  If my husband felt like the man Matt meets he would have left me a long time ago.

By the way its raining cats and dogs her in Baton Rouge today.  I have an appointment with Mr. R that was supposed to be yesterday so he's going to catch some flack from me because I have to get out in this.  To update you from last post my injection is scheduled for the 28th.  It seemed so far away and I was so disappointed. Now it's just a little over a week away.  Please pray for me that it helps some. I'll take any amount of relief.  

Samantha and Dana I'm praying for you. Please continue to stay in touch.  Our support is so important to our well being. 

Holding on to H.O.P.E. (hold on pain ends)

Wednesday, July 9, 2014

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

Tuesday, June 17, 2014

New News

If I pick up where I left off I'd share that I love my new psychologist.  She is a lot different than who I was seeing.  I liked her though, that's very important for someone who will be prescribing you medication that can change your total attitude and nature. 

She had a drug in mind at the end of our session that she thought she'd really like me to try.  UGH...I hate coming off of antidepressants.  It's always so scary.  Not to mention I'd just had this awful experience with the Limbrel that was still slightly present.  She went into discussion of why she was considering this medication.  As I left she wanted me to just take my current medication and she'd call me the next day with her decision.  She wanted to review my genetic testing.  

On Tuesday she called as promised but had something else in mind she wanted me to take.  I have to say I was disappointed at first because I'd done some reading the night before. For the first time I liked what I read and even the patient reviews were good.  Those can really scare you.  D does not like for me to read all of that.  I had to trust her judgement though.  Dr. L's notes mentioned that she was considering me trying this medication and she agreed it seemed to fit my needs based on her notes and genetic testing notes.  The good news was she had the first month in samples for me.  My husband went by and picked it up for me and the journey started.  

OMG !! I shouldn't have read the reviews on this one.  Maybe 1 out of every 10 was positive but 9 negative with a lot of side effects.  The next day I started tapering down on the Viibryd and started the new one.  Two days of 20 then up to 40.  Today was the last day of the Viibryd.  It hasn't been to bad.  Not sure the side effects I'm feeling are from coming off one or starting the new one.  This new one has only been on the market since the fall of 2013 so I'm a little nervous about that.  My new doctor likes that it helps with chronic pain.  Like Savella, Cymbalta, and Lyrica all of which I've tried.  Maybe, just maybe this is the one with the perfect balance.  Pain, depression and anxiety.  Supposed to cover all of this.  What a wonder drug if it does! 

Yesterday was my annual eye exam except it was a little later than annual.  I just can't seem to stay out of a doctor office so there are a couple I scheduled out during the year even though I was due to go at the end of the year.  I have to see the dermatologist next month.  

I've been telling my husband that I had a feeling my prescription for my glasses would change.  Seems every time I go in my eyes are worse.  She said around age 60 they will level out and should stop changing.  Not urgent.  I can wait a few months and just call in when I'm ready.  After my eyes had reached the point they were dilated enough she seemed to spend more time than usual looking and studying.  After she was done she talked to me about Fuchs Dystrophy.  The good news is that I come for my annual exam so we caught it right away.  I was kind of in a fog as she explained about the disease, causes, symptoms and worst case scenario.  

Wow, I sat in my car feeling like every time I go to the doctor they tell me something is wrong.  I think I will stop going.  I know that's not the answer but right now I'm still in the "why me" & "don't I have enough" stage.  I'll be past it soon.  I don't stay there long, but it's something I have to go through.  My way of dealing I guess.  

Fuchs Dystrophy, no matter how you look at it, has no good end.  It's a slowly progressing corneal dystrophy that usually effects both eyes and is more common in women.  It rarely effects vision until people reach their 50's and 60's.  I'm 7 months from knocking down that door!  Symptoms may include:

Blurred vision on awakening that may gradually clear up as the day goes on.
Other types of visual impairment, including distorted vision,  sensitivity to light, difficulty seeing at night and seeing halos around lights.
Eye discomfort..
Painful tiny blisters on the surface of cornea-caused by excess fluid within the cornea.
A cornea that is cloudy or hazy in appearance
Blindness-may occur late in the disorder.

Treatment involves in early stages topical hypertonic saline, the use of a hairdryer to dehydrate the precorneal tear film, and therapeutic soft contact lenses.  Definitive treatment however is surgical in form of corneal transplantation.  

At this point I stopped reading.  I don't want to know or understand anymore right now.  My progressive change in vision is not related to the Fuchs Dystrophy.

Gluten Free is going well.  I want to mention because there has been some talk in the news of GF being unhealthy if you eat too much of the same thing over and over and not getting in enough veggies.

Kind Bars....very good  GF

scrambled egg with veggies, GF shell with salsa
A couple things I discovered that are good.  The Kind bars are tasty.  I try to just have one occasionally.  They are expensive at some places like health food stores but Albertson's carry them.  They regular price is still cheaper than HFS. I recently caught a sale on them for .81 cents.  Thats why you see a box of them!  I never eat breakfast for breakfast.  Honestly I hardly like any breakfast foods.  I do however like scrambled eggs for supper.  I decided one night to jazz them up and put in a GF wrap add a little salsa and it was awesome.  

At least 2-3 nights I've been stuck on jasmine rice with saute bell peppers and onions, grilled chicken and broccoli all tossed together.  Guess what I add for some spice?  Yes your right, some salsa!

Jasmine rice, broccoli, bell pepper and onions 

Thats all I have folks.  I'm processing this new news and really can't wrap myself around anything else.  
Enjoy the rest of your week and I wish you peaceful and painless days.
God Bless,

Monday, June 9, 2014

My two week pity party

I changed my mind three times for the title of this post.  I saw some hope and once again feel defeated....

Two weeks ago tomorrow it dawned on me that I was supposed to stop taking any NSAIDS until my scope that was scheduled for that Friday the 30th.  Great, day one tomorrow of a week of hell.  I just didn't know how I was going to deal without my "extra" help.  

Sunday wasn't to bad because I tried not to do anything more than I had to.  The following day was Memorial Day and D had grilled the day before so I didn't even have to cook.  I'd really started to dive into my gluten free change. I had very little left in the house of mine that would be a "no-no".  I was pretty set for the week.  

Tuesday I went to my daughters house as usual to watch the grandkids.  I got through it.  I'm usually pretty beat when I leave but my pain level was pretty up there this day.   Each day seemed harder and harder.  I did everything I could to get through without the ibuprofen and not increase the pain medicine.  More creams, increased stimulation and a lot of praying.  In the end it caused a flare up that was out of control and guess who came to visit...yeah my friends the hives.

Thursday evening came around and I was so relieved it was over.  Try and sleep tonight, take the test tomorrow and get some answers.  I always believe before every appointment or test I'm going to get an answer.  The same answer I've wanted to know for years.  No different news about this text.  Pictures looked the same as last year.  That part is good, but the fact that my symptoms are much worse are not.  He said absolutely no more ibuprofen.  I'm crushed! What about cutting back I asked him?  He said, "well, you could take 1 TID"  I seriously thought he was joking.  I take 4 at a time.  I was thinking more along the lines of taking the 4 once a day instead of twice.

My mind drifts back to the Limbrel that my PM doctor wanted me to try.  I tell the gastroenterologist about it and he agrees it's a great option to try.  So I take my first dose when we get home with my coffee I missed earlier that am. I had another prescription to pick up that day so I discussed how to take the Limbrel with my pharmacist.  I was thinking it was like the ibuprofen and you have to wait 2 hours between it and pain medicine.  She let me know it doesn't work like pain medicine and not to get my hopes up to get relief instantly.  If it  works it will be an overall reduction in pain scale by reducing some of my inflammation.  She said it won't make me feel better, then ware off like the pain medicine.  So when I returned home I was glad to know I didn't have to wait two hours to take my pain medicine.  It was almost lunch time and I was just taking my morning regime of medication. 

It's supposed to work best on an empty stomach so I wanted to do my best to try and take it that way.  By my second dose that night I was so nauseated :/(
Please God, let this be temporary.  One of the side effects but should pass quickly.  Not taking with food will help your body absorb better.  It continued most of the week.  Wearing off a little each day.  Finally by Thursday I was past it almost completely.  Then the bombshell hit...I went to bed that night and shortly after lying down starting feeling as if the bed was spinning.  Ok, this was weird.  What in the world is different.  It continued to get worse and keep me from sleeping.  I took out my pain/medicine journal and started to study.  

I got up Friday morning and when my feet hit the floor I felt so dizzy I went right back down.  It was so weird to me I'd never really experienced dizziness like this.  Both times I tried Lyrica I though I was dizzy but now I'd call that "light headed".  More like a brain fog or brain zaps.  My eyes twitched with that medication also. 

I had a friend coming over to visit and wasn't by any means canceling my plans.  My car was in the shop and I was stuck home anyway so I tried not to let it get me down.  I told myself hey, your not going anywhere today anyhow so couldn't be a better day to happen to you. It will pass and be over.

Speaking of my friend,  One of the things I love about her is she has no problem calling me and saying, "hey are you free this week I want to come visit?".  Perfect day for her to come since I was at home and even though I was feeling pretty weird having her here kept my mind off of the dizziness and my worry of why? It actually lightened a lot for some time but then later in the afternoon right about the time D got home I had to get still and recline in my chair.  I still took my evening dose of the Limbrel and I could tell after that the swaying, spinning and nauseas feelings returned with a vengeance.  Ugh...this can't be happening.  Please tell me it's not the medication.  If it isn't though, what is it? I really need this medicine to help me and to not make me have new problems.  After another rough night Friday night and barley able to get around Saturday am I was really getting down about this.

Who can I call on a Saturday? pharmacist. I love her.  She knows my husband and I both and I can talk to her about most anything.  I let her know what was going on and she recommended I get something over the counter for nausea because that usually helps with dizziness also.  She recommended I try some Bonine until I talk to the doctor on Monday. 

 She said there was a possibility it may not even be the Limbrel.  It may be vertigo she said.  I don't know what would be worse to not be able to use the Limbrel or deal with treating Vertigo?  We talked about how I'd recently started swimming again.  Maybe I had some water in my middle ear she suggested?  Maybe this, maybe that.  Try this and call your doctor Monday.  The most she could do for me.  She's not a doctor after all she reminded me.  She could see the disappointment.  I couldn't hide it. 

I had taken the morning dose and decided on my own to skip the night dose.  At 1am I was finally able to lay my head down and try to sleep.  Even the Bonine was not helping at all.   I'd decided I'd rather start over if I have to because it's the only way I see to know if that's what's causing the trouble.  Sunday morning I was so exhaused from the previous two nights lack of sleep. I pushed my way though a epson soak hoping to detox some of the medication out of my system and I was really adding to the large amount of water I drink.

I wish I could explain how I was feeling.  I tried telling my husband.  He said he understood but I know he didn't.  What's new with me not feeling good?  It's always something.  I am a fighter though.  I was so sick of feeling sick that I wasn't spending another day stuck in my house feeling like I had to hang around the bath room and hold on to the walls.  I got dressed and made myself to to the store.  I think I know how a drunk person feels driving now.  Don't know how I got there but I did and I was ok.  Felt good to get out of the house. 

It wasn't until 5 this evening I seemed to feel better.  Matter of fact I had went out side and realized I was watering and doing ok.  I decided to get in the pool and walk around a few laps.  It went very well surprisingly.  Could this be over?  But what does that mean?  I can't take the Limbrel?  That really stinks.  Guess I will wait to talk to him when he calls instead of making conclusions.  Maybe I can try the lower dose of 250.  I asked my pharmacist if maybe eating with it may be helpful.  She said that is not a side effect that would change from eating with food.  

So I usual.  On them to see what they say.  I'm expecting to hear it mostly like was the Limbrel causing or why would it have cleared up over the past two days.  If it continues to stay clear guess I know for sure.  Like I said above, I really needed this medicine to work for me but I push myself though a lot with my back already hurting.  I guess if I can't take it just wasn't meant to be.  Worse case i'll take the ibuprofen anyway.  At this point I'm just looking forward to sleeping good tonight and waking up feeling "normal" for me.

Tomorrow morning I have an appointment with my new psychologist.  Third one.  I really like the previous one but she retired to be with her daughter in another state having her first grandchild.  I guess I can't hold that against her. I just hope this therapist and I connect and have the same relationship I did with Dr. L.  I have a lot of questions for her.  None pertaining to any of my issues from this week end.  She doesn't prescribe that medication for me.  I plan to ask her to try and wean off of some of my others if she thinks I am ready. 

Thank God for my stimulator and it working so much better than it used to.  I couldn't tolerate what I do without it.  Some parts of my post may not seem right as far as time lines and days.  I tried multiple times to write but many things were out of the question with the dizziness.  Reading, watching TV, checking email, walking around in the pool.  Very simple things I couldn't do.  It was so frustrating.  Tomorrow is a new day.  If I can't take the medicine I accept that.  I just hope it doesn't come back.  I have no idea what my treatment for inner ear problems or whatever vertigo treatment is.

Struggling to keep up H.O.P.E.

Morning Prayer to start your day.

I will this day live a simple, sincere and serene life; repelling promptly every thought of impurity, discontent, anxiety, fear, and discouragement.  I will cultivate health, cheerfulness, happiness, charity and the generosity in giving, carefulness in conversation and diligence in appointed service.  I pledge fidelity to every trust in a childlike faith in God.  I will be faithful in exercise, deep breathing and good posture.  Eat only healthy foods and get sufficient sleep each night. I will make every effort to improve myself physically, mentally, emotionally and spiritually every day of my life.