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

A new scar

On January 30th the oncology surgeon did the surgery to remove the rest of the recurring melanoma from 2011.  It's coming along with the healing.  I'm in 10 days.  The scar itself is looking better but the top and bottom portion are still very tender.  As of this morning I haven't heard from the oncology office on the lab results so I gave them a call.  He told me day of surgery that we should have results in 3-5 days.   I didn't get a return call as of tonight.

I'm anxious for my follow up appointment next week.  I'm hoping he will let me start to put something on it for the dry tight skin and to help with the scaring also. 

On to other news.  I really wanted to get involved in a project I read about the last time I was at the library.  It's called Crochet Compassion.  A group of women get together the first Tuesday of the month.  They do some work for the homeless, but I got much more out of it than that.  It was nice to meet some new people and socialize.  What are they making?  Mats for the homeless.  It can be wet and cold outside.  What little they have to put down on the ground ends up damp and or wet.  The plastic mat helps keep whatever cover they have dry.  

These ladies spend many hours making balls of plastic yarn (plarn) from plastic bags you get at the grocery store.  They are smoothed, folded and cut into strips of circles and connected together.  When you connect enough you roll into a ball and get started.  It's just basic crochet after that.  I had been saving some bags but I discovered right away that I needed many more.  I called on some friends who came through for me.  I was also able to get some from some of the local retailers from their recycle bin.

I would be a lot farther along but unfortunately the crocheting part bothers my arm.  30 minutes into it it starts aching.  It hasn't stopped me though I've been chipping away at it.  Feels good to be doing something to help someone else instead of feeling sorry for myself.  

 What I've completed                 Bags every where

A mat completed, hard to believe that's  plastic bags!

Since I've written last my youngest granddaughter turned one.  She was the sweetest thing at her party. I was having a better day than usual, except for the sore on my leg, so I really enjoyed myself.  It was so fun watching her dive into her smash cake.   She started out with her fingers but then the little Diva used a spoon.  In the end it was all over her face and belly.  No worries though she cleaned right up with a quick splash in the tub.

I read the book "Killing Lincoln" I liked it so much I've started "Killing Jesus".  

Movies.....a couple weeks ago we rented BoyHood.  I liked it, it was unique but not as brilliant as advertised.  This past week end we watched The Judge with Robert Downy Jr.  It was awesome.  

After my two picks I had to let D pick one and his was Fury.  It was kind of bloody, war movie but if you got past that and the cussing it was ok.  My opinion on all of course.   Funny how we rarely watch movies but every time I'm recovering we get through several.  

Nonna with the birthday girl

enjoying her cake

chilling in her birthday chair!

I can't believe we are moving right on into the middle of February.  Seems it was just Christmas.  I've made plans to spend some time with some friends at the beach the first week end in May.   I can't tell you how much I'm looking forward to that.  Right around the time that happens we should be opening the pool too.  The walking has been tough.  I've been thrilled to keep fighting and getting it done but I'm also looking forward to exercising in the pool again. 

Take care and stay full of H.O.P.E.

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 :-)

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.

America.....land 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.
Theresa


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

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 easy...no 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 Unbroken....at 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.
Theresa

The joy in my heart

Thanksgiving day

I MADE IT!

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 though...it 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

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.
Theresa

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