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.

Tuesday, March 31, 2015

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'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

Monday, February 9, 2015

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.

Monday, January 12, 2015

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 )

Handsome boy P
AJ with all her Minnie's

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