Difficult

I know that I am very lucky.  Many people with my condition are home bound, however it is hard to have so little energy and watch other people just move without thinking.  Just standing up is difficult.  I have to plan my life around how long something might take and whether I can get through it.  I try very hard not to let others see this but sometimes it is difficult.  The worst part is that my daughter may never know the mom who  could keep up with her.  I have to remember that the most important part is that I am here.  So much of my life I was constantly on the go and maybe a higher power is using this to slow me down and force me to take my time.  I will try to not be difficult and just appreciate what I have.

More Okie!

Pictures of Okie for the week!

Okie Has Arrived!

Decided to not only include past stories on this blog but also current events going forward.  If you check out my older blog - Why Not Now - Infertility - you will learn about all of the work and joy that it took to get my beautiful 7 year old daugher, Erynn.  She is my happiness and we have been doing the Elf on the shelf for the past few years.  This year I put together a calendar of the things her elf Okie will be doing for the season to keep me from having to think up something every night.  Below are the pictures from his return this year and the next night when he wrote his name in toothpaste.  I will put the pics from each night out here just for the fun of it!  We probably do not have many more years left of this so I am trying to enjoy it too!

Vitamin C - It's A Good Thing!

Have had a major sinus event this last week and decided to up my vitamin C usage to double recommended.  I think it helped and it seemed to help the knee pain also.  I have seen shows and done reading and pumping up your immune system with Vitamin C helps with a lot of things.  May have to continue for awhile and see how it goes.  The foot burning is still going on and having some issues with pain in other areas but have to just keep going!  Too much to do for the holidays!

Feet owww!

Personally, I am getting tired of the feet burning!  Out of nowhere, it feels like a rancher with a branding iron is pressing it on the bottom of my feet!  Owwww!  I have a hard enough time walking around without that happening.  How am I suppose to exercise at all?  Maybe I should just exercise mentally and hope that works!  

Unorganized Sports

Back in my day we had unorganized sports.  On Saturday, we got up, had breakfast and watched cartoons until about 10am when they went off.  Nope, we did not have 24 hour cartoons.  Then we got dressed and went outside and played with our friends all day.  Mom said be back by dinner and we rode bikes, we played ball, we built forts, we played with dolls, we dug in the dirt, we played on our swing sets.  Parents did not get us ready for soccer, volleyball, baseball, football etc.  We were not organized unless all our friends got together and we decided on teams.  It was a more innocent time where we knew our neighbors and they watched out for us.  Now we watch out for them and hide behind our walls and fences.  I am glad that my daughter is doing organized sports but I wish she could have some of that unorganized too.

Finding Relief

Relief...something that is hard to find.  I take my meds diligently but there are still those days when the pain breaks through.  Days when your feet feel like someone has put a lighter to them.  Days when your new chillow pillow is a requirement so your head does not scorch the bed.  Days when your knees feel like they will not bend and your back won't coordinate with the rest of your body.  Days like today.  Relief may come when I finally go to sleep! 

How Are You? Fine!

Are we really Fine!  No!  Why do we walk around asking people how they are doing if we really do not want to know?  Why do we just say Fine when we are asked?  Why aren't we honest with each other or just not ask?  We spend alot of time on computers and not paying attention to each other.  What did your friend at work wear yesterday?  Do you think if we spent more time face to face (we do have Facetime, Skype and Hangouts) even if using a computer

• that we would be more honest with each other
• more happy
• better able to understand others
• actually create a world that is open to each other?

If at least once a day when asked how we are doing we actually told someone the truth, would we be able to create better personal connections?

If at least once a day when we asked someone how they are doing we actually questioned if they were really Fine would we find someone who needed us?

I encourage you to Wake Up today and spend an extra moment with honesty and not just being FINE!

Potluck

I am not sure if this is something done "up north" as they say but we do it a lot in the South.  Some of the best meals have been those where everyone brought a dish.  Of course, now there are people who bring 'store bought' food but we let them eat too.  Trying other cooks food has been a staple of my life.  Even at family dinners we do the potluck thing so not just one person has to do all the cooking.  At these events you get some great dishes like deviled eggs, potato salad, fresh corn, green beans, fruit salads and casseroles galore.  Desserts are endless and small talk is fun!  If you have not been involved in a potluck recently then you need to plan one right away!  

Fatigue

The issue I hear the most from people with neuropathy is that fatigue can be the hardest.  Most of us have found ways to deal with the pain - burning, itching, etc.  But fatigue is bad because it takes from us the handling of our daily lives.  I have rare days were I can do many things and too often I then do too much and the fatigue when it comes back is very bad.  It is hard to explain to those who do not have this issue how wearing it is to move 5 feet and feel worn out.  Things still have to be done and for me it is the toughest part.  Before neuropathy started for me I was going alot.  I could do all that needed to be done in my house in a day.  Now I have to plan it out and it seems that I constantly have something to do.  It is very demoralizing to never feel like your jobs are completed.  I am one of those people who likes to check off  tasks and that just does not really happen anymore.  I try to let things go but some days even the little things bother me, not so much anyone else in my house so I guess if it does not bother them it should not get to me.  I hate to think if I am this tired now how I will feel when I am really old!  Rest, rest, rest is the mantra I guess.

Green Grass

Every time I smell fresh cut green grass, I go back to my childhood with my family and the joys of outside.  Sunshine, rain and mowers was time with my cousins and my grandparents!  Miss that a lot!

Itchy

Totally let last Saturday pass by!  This week has been itchy.  If I miss my new meds or am late then my whole body especially feet and head start feeling very itchy.  The nerves are just crazy!  Other than that still fatigue easily and walk like an old woman!  Well at least I can walk!  

Sweet Potatoes

The first two years of college I spent at a community college and lived with my aunt and one of my grandmothers.  That was an excellent experience but along with that I also spent at least one day a week having lunch with my mom's parents.  I learned a lot about them during those lunches and I discovered that my grandmother and I both loved sweet potatoes.  So almost every lunch I had with them we shared some sweet potatoes and I got to be apart of their daily life.  There are days when I remember this time and I miss them even more.  I was truly lucky and blessed!

You Are What You Eat...

....apparently I am fries and other fatty things.  I read all about eating better and think it but have a hard time acting on it.   I enjoy food very much but I need to really get back on a good eating plan or this change off of cymbalta meant nothing.  Well, go go green food.  I just need to add more of that and keep trying.  This week's pain mainly involves burning feet and crazy dreams that wake me up in the middle of the night!  Mixed up sleep does not help improve the pain either.  Sending good thoughts to everyone dealing with this craziness.

Columbia House..You Know You Did It Too

Do you remember the day that you were allowed to spend that 1 cent and begin your time with the Columbia House Tape Club?  This was before CDs, Ipods, downloads, etc.  This was back when you had to order and wait on a package.  This was when you had to look through a booklet and make selections on a card that you hand wrote numbers on.  There was no internet to do this on.  We bought stamps and mailed things.  I remember a few of the first tapes that I ordered in that 12 for 1 penny deal. A Flock of Seagulls...REO Speedwagon...Alabama...Yes, I was diverse in my musical leanings.  There was patience involved.  There was excitement in waiting on receiving what you ordered.  I had tons of tapes before it was all said and done but now I do not have one left.  Sometimes I miss the time I took reviewing my choices and talking my parents into letting me buy more.  Now we get these things so easily that we do not think about what we are spending nor do we make good choices.  Everything is too easily at our fingertips.  The sound quality was poor at best compared to today's music but I knew all those songs and enjoyed the wait in receiving them.

Neuropathy Varies

Spoke with a friend this week who has been dealing with shingles in his head.  Horrible!  He has developed some neuropathy which has shown as numbness in his nose and head.  No matter how you get neuropathy it is never a good experience.  I feel for everyone who has this issue no matter how it developed.  My change in medicine is working for the most part.  I still have some break through pain but glad to have something that I can take.  Weight is coming down instead of going up so I keep hoping things will improve.  Keep eating right and moving!

Epiphany

Today I had another epiphany! I say another because I seem to have them a lot recently.  Today's epiphany concerns weight.  Yes I do need to lose it.  But today I learned a new saying. Don't subtract just keep adding!  This means don't take away food that you like just keep adding good new food.  Over time the good new food will overwhelm all the bad and you will have a way of life!  Remind me to continue to tell myself to keep adding!

Gwendy and the Ice Cream Store

I was in 1st grade when I met Gwendy, we were the best of friends!  We lived in a small town with the proverbial one stop light!  There was a library, post office, schools and churches.  Gwendy and I spent our summer days on our bikes all over town visiting with friends and playing!  At least one time per weekend we would visit the Ice Cream store which also doubled as a market and find anything you want store.  The lucky part about this was that Gwendy's dad owned the store so our weekly ice cream cone was free.  I was 6 years old the same age as my daughter now.  I can not imagine her doing the things I did at that time.  I left home in the morning and got back at dinner and never worried about being out.  Neighbors kept an eye on us and we were never scared!  I get worried having my daughter out of my sight in our own yard now.  It is sad that she will never know that experience.  My age group is the last of the free kids who could travel alone and play outside after dark.  However, she will have her own experiences that I did not.  She is constantly on field trips with friends and groups are a big part of her life.  Maybe that makes her a more social person ultimately.  Her time is more structured some times but I try to open up times for her to just play and be creative.  How I remember so much about my time with Gwendy (up until 5th grade) I can not say.  Maybe those years are still a part of all of us - they just come back when our babies are there and learning new things everyday!

Vimpat and Vacation

My new medication is Vimpat and we have had to reduce the dosage because initially it made me have a very short fuse.  I started the lower dosage this week while on vacation and for the most part it did what it should and I did not get that angry.  However, the last couple of days I have felt down and negative and tonight I feel like my face, feet and hands are covered in a blanket and heated up.  It could be that my body knows that I have to go back to work soon!  Who knows!  Everyday is a new test!  I hope that I can start losing weight so the medicine change will feel beneficial.  Talk more later!

Catch Up!

Knees are better!  Ortho says no surgery for now as long as I am feeling good but  I need to continue with shoes and low impact exercise.  Also saw my Neuro and I am now off Cymbalta and on a new medication.  Our hope is that I can now lose some weight which will help with everything else.  Wish me luck on this as I continue with Weight Watchers.

Tingling Dance

Morning!  Well I did get 6 hours of sleep after passing out at 9pm.  I woke at 3am and now my feet are starting the tingling dance.  As an update, visited the neuro yesterday and we are changing me over from Cymbalta to another med, something V... Vampire....Vy...oh, I don't remember.  Anyway, hoping this change will allow me to lose some weight so my knees don't completely collapse say...at the top of the stairs I have to take to get in and out of my house.  All I need is further pain in the head!  Well, I am over my maudlin feelings of my last post and I decided that I am not going to allow my pains to rule who I am!  So I will accept hugs and jokes to help keep me going!  Talk at you later!

Who Am I?

Who am I?
I don't know anymore.
I seem to live from moment to moment focused inward.
I hope that mostly you only see a smiling face and a warm hello.
But I think I am beginning to lose even that.
This body with its varying pain degrees is taking over my heart and mind.
Only in my dreams do I come to realize this.  
I wake up ashamed, feeling horribly alone because everyone now is at least arms length or further away.
In my mind I am screaming that I love you, appreciate you and need you so much.
However, you can not see that.
All you can see is the face I give you which is more and more not really me.

I am tired of this body dictating who I am.
I have shed tears tonight because I want me back!
I believe that in the process of hiding my pain so that I appear normal, I have begun hiding my love.  
It is there in my heart but the place aroumd my heart is getting tighter and tighter and more closed.
I feel so much like a robot who is just walking through.

It is time!
Time to get over myself! Time to tell the pain to take a hike!
Who I am has always been the one there for my friends and family.  I need her back!  
All I need now is for you to send your white light positive thoughts toward me so I can find her again!

I love you all never forget that!

Love you long after you are gone...

This is how I feel about my family!  

Burning Feet

Feet are burning tonight!

Why????

* Cortizone shot in my knee or,

* Either the 

       fresh tomato, 

       steamed cauliflower, 

       steamed broccoli, 

       portobello mushroom or 

       the coconut milk ice cream or, 

* They are not happy that the knees are stealing the show or,

* I missed those hot coals outside my office!!!

Who knows?!?!

Art Attacks

Visited the orthopedist today and found out that I have fairly severe arthritis.  His comment to me was that it looked like both of my knees had been playing football without me.  I assured him that this was not the case at least that I was aware of.  My left knee is the worst but has the least pain.  My right knee has been very painful as I apparently have a Torn meniscus that needs to be repaired.  He gave me a shot and wants to see me in three weeks for me to tell him we need to do surgery.   Not so sure about all of that as I will be left unable to drive for a few weeks most likely.  Getting old stinks!!!  I would now like to thank my mom and my grandmother and my grandfather all for giving me these wonderful genes for arthritis.  I love them all but seriously!!  More to come I am sure....

Swollen

So today my knee feels better after it appears I popped it back into place last night.   However today I'm making myself worried about my swollen feet and hands.  For the last few days when work is over my feet look like little hot dog blimps!  I cannot seem to get over one thing without another thing rearing its ugly head!  Back to the neurologist in a little over a week and we have a lot to talk about!

Pain pain pain

Pain pain pain go away come again no other day!  We get one Leg fixed and now the other leg is a problem.    It seems that there'll always be some kind of pain.  I have a brace on my right knee and I head back to the orthopedist on Monday.  I try to keep telling myself that there are people who have it much worse than I do.   But the pain pain pain won't go away!

Awww No More MSG!

It is official!  MSG affects my nerves!  Typically when eating Asian food I have been cautious about MSG because a couple of times I noticed my fire pain pick up after eating at Asian locations.  Yesterday, I had lunch with my sister at a Japanese place (love sushi) and it was great but not very long after the face, feet and hands really began to heat up!  Have not had it that bad in a while!  So no MORE MSG!

This week has been difficult for the country and especially for those in Boston.  I am so sorry for all of those who now have leg issues including losing their legs.  It did make me see the better side of my current leg pain.   Hey, at least I have my legs!  It could be so much worse!  Even if I have to sit down and scoot down the stairs at my house it is better than losing what I have!

I send my love and peace out to all of you especially all of those in Boston!

Cymbalta May Have To Go

The more reading I do the more I think I will never lose weight and may continue to gain weight due to the Cymbalta.  So many people comment about how they work out constantly and hardly eat and still while on Cymbalta they are gaining weight.  I have decided to call my neurologist on Monday and see what we can do about changing me from Cymbalta to something else.  I hate it because the Cymbalta really works for my neuropathic pain.  Well, I have to do something because I weigh as much as my husband and am almost a foot shorter.  Also I think the weight is making the leg pain worse.  I spent yesterday at the zoo with my daughter on her school field trip and was worried about how I would do.  I wore comfortable shoes and took a couple of doses of my prescription Aleve and it got me through the day.  Last night my legs hurt alot and this morning I almost fell when my right knee wanted to give out on me.  Almost in tears but I keep reminding myself that others have it much worse.  I visit people on a neuropathy site on Facebook that really have severe issues.  I just worry that I am getting worse and not better.  I want to be myself again but maybe this is myself for the future and I need to deal with it.  

This is very difficult because my pain is not visible and I think sometimes that no one believes me when I tell them that I feel bad.  I assure you it is not in my head well maybe when it is burning!  Anyway, support those you know that have unseen pain and do what you can for them.  

Got my new ugly shoes this week but they are great!  Check out orthaheel on their website or Amazon.

How to... from my Grandparents Harper

This is one of my most favorite pictures ever.  These wonderful people were my maternal grandparents.  William Edgar Harper and Sylvia Lucille Anderson Harper were super fabulous grandparents.  This picture is special because this is one of very few pictures with me, my brother and them.  Also, my granddaddy did not give hugs often so just the connection of all of this in this picture really makes it the best.  Everyday I miss them both very much!  They taught me so many things without really even trying but just by being themselves.  

• How to enjoy the simple things.  
• How to appreciate the people in your life.  
• How to deal with pain and suffering. 
• How to cut grass properly.  
• How to know when to hang clothes on the line and when to use the dryer (rarely).
• How to know when to turn on the window air conditioner (even less).
• How to sleep with your head at the foot of the bed.
• How to shovel coal and carry it in for the heater
• How to find just what you need in the "pump house"
• How to always wear heels and look your best.
• How to apologize and never ever lie to anyone.
• How to run just the right path to the storm cellar before the big rain hit.
• How to order properly at Burger King and Captain Ds.
• How to show god through how you live.
• How to cook sweet potatoes and "red weiners."
• How to sit on the porch and listen to the rain.

And so many other things!  

I will always love them and they shall always be a part of who I am!

New Issues - Legs

I have not been posting here alot but I will try to do better.  I now have a new symptom to add to my neuropathy issues.  Major pain in my left leg front between knee and ankle.  Went to and orthopedist who said that it is partially related and beyond that I have to wear shoes anytime I walk including in the house.  I am a barefoot girl so this is a tough one for me but I am doing what I can.  Basically, I have proration which means my legs bow out from my ankles.  Doctor recommended special inner soles, additional vitamins (most of which I am already taking) and aquatic exercise.  He gave me a lovely shot that he allowed me to watch go into my foot with the ultrasound.  That was fun except for the pain involved!  I thought I was going to scream when he probed that leg.  I am use to pain everyday but this was excruciating.  Well, the shot has helped except to cause the fire to act up in my arms and face.  The doctor did worn me of this.  Yippee!

Anyway, it could be worse!  I can walk, talk, and breathe!

Working to lose weight which I know will help this whole thing!  When you see me encourage me to keep going on the Weight Watchers and the lifestyle changes.  We can heal ourselves!

Article About Idiopathic Neuropathy - My Kind

Idiopathic Neuropathy Steps for Providers


This article helps explain how difficult it is to determine the cause of neuropathy for so many of us.

Twitty City

 

Twitty City...ever been there?
Even know what it is?
Well I do and I have been there?  Admittedly it was many years ago but I have pictures to prove it.  Twitty City was the location where Conway Twitty famed country crooner retired and invited all of his fans to come visit.  As a side note, I have also visited Loretta Lynn's homeplace.  That will be another story for another time.  By the way, I did not choose to go to either of these locations.  One summer we were on vacation in Nashville when my sister was very young and my cousin came with us.  We visited Opryland (for those of you who remember that one) and my mother who was a super fan of Conway Twitty felt that we must visit Twitty City.  So off we went and learned all we could have about the singer and his life.  I think he was actually there and we got to hear him sing also but it has been awhile.  Anyway, those of you who have visited Ireland or Italy have nothing on me because I have been to Twitty City.  Too bad it is not still there so you too could have the experience!

(my brother, sister, mom, me and my cousin)