Busy Week

Went out tonight with 2 of my guys and was allowed to snap this photo with my iPhone.  Convinced Holt he had to let me get this hair cut in a photo!!  I think this is the best one he's ever had, in my never to be humble opinion.  lol 

February, 2011

 Holt just got his wisdom teeth out last week and has had a bit more pain than usual, but no issues.  No dry sockets or infection.  He is on the mend.  I introduced him to Chik Fil A lemon pie and he might have died and gone to heaven.  He's pretty sure he did.  lol 

Oh, almost forgot.  Holt was recently diagnosed Severe ADD - Combined Type and put on medication for the first time in his life.  His daily commentary has been something else - he says "It feels like my brain has been turned on for the first time ever!"  He cannot get over how different he feels, how much easier it is to "think", how much easier it is to remember things, how much more he smells things (that was a shock!).......he says he can't imagine if he had taken these meds years ago, how school might have gone so differently.  He was asked repeatedly but since he always said "no", there was no getting him tested.  (He had to cooperate).  Little did we know then that the Alexithymia prevents him from being able to answer such a question.  He can't ask himself, "Do I feel confused?"  That won't register with his brain.  Interesting, huh.

Ryan got promoted at his job to Shift Trainer/Manager and is loving that.  Even though it was only a 15 cent raise per hour, he loves being in charge.  (From what we heard, he was already "doing" this job before the promotion, Ha!)  He is going well in school and is ALWAYS golfing.  I swear, we never see that kid.  He shot a 70 yesterday in heavy wind and was very stoked.  The weather is beautiful right now and he isn't wasting it.  (For his birthday next month, we got him a "new to him" set of irons from a teammate who was trading up.  Ryan LOVES these new irons.  Hasn't had a new set since age 14, we think?  He got good use out of the old ones.)

Hubby is getting his veneers redone FINALLY.  He started this over 2 years ago....thought he'd go in for veneers.  Found out his teeth were horribly misaligned and if he did not correct it, he'd be in dentures in 10 years.  So braces went on and here we are.  He spent 5 hours in the dentist chair getting his teeth ground down...........and he was SHOCKED (we all were really ) at how dark green/brown his teeth are (from Tetracycline prescriptions as a child.)  His first set of veneers lasted almost 25 years!!!! (Usually last around 10.)  

It was not fun - very much sensory overload and his teeth/gums were not happy.  They had to put on temporary veneers (where this was not needed 25 years ago) and he will go back in several weeks to get the permanent ones on.    Here are photos of before and after.  We're debating putting the green/brown teeth photo on, but may if we think it would help others in the same position "see" what a difference veneers can make. 

Braces, May, 2009

Old Veneers, AFTER braces, February, 2011

Small snapshot of 2 of his current teeth, after the grinding and before the temporary veneers.  Gums are discolored due to the procedure of grinding.

Temporary Veneers, February 17. 2011

I just did a Google search of "Tetracycline teeth" and could not find a photo any where near as dark and stained as my husband's teeth.  Unbelievable what that antibiotic can do!   YAY for veneers!!!  I am so thrilled he was able to get this done and that they have worked so well and lasted so long for him.  He's hoping no more grinding will be necessary - 5 hours is a long time without a break!!  I went in to help him pick his "new" color for the new set.  He will go back in a few weeks and get those permanently bonded on.  The new technology will block the dark gray/brown/green teeth from ever showing through.  (The first set he had DID have some bleed through over the years.)

My pain flare has decided to decrease in intensity, and I am so thankful.  It was a long month.  Sure wish I could figure out the triggers, if there was one.  I did end up getting some super soft "minky" fabric to wear around my midsection front to back (like a tube top sort of, but around my stomach ribs to hips) to keep all other fabric from touching my skin.  That "central pain" feels like the worst sunburn of you life X 10.  Air blowing on my skin can send me screaming.  Just awful.  I am thanking God it once again is going away.  How some people live with this 24/7, I do not know.  My regular nerve pain is quite enough, thank you very much.

Oh, and I took a crochet class at a specialty yarn store and I was the only student - Perfect!  She thought I was a beginner, but I showed her my projects (that hat, and a wristlet thingy I made), so we spent the time just making sure I haven't developed any bad habits (I hadn't!) and helping me learn to read patterns (since I taught myself watching videos - reading actual patterns has been somewhat difficult for me.)  I'm visual!!!

Ok, that's it.  Back to crocheting!

Keeping It Real

One of those weeks where I’m reciting the Serenity Prayer over and over and over…..

GOD
Grant me the SERENITY
To accept the things
I cannot change

The COURAGE
To change the things I can

And the WISDOM to know the difference

Credit - Charlie Murdach

 

Central Pain -

It can be a steady, sometimes deep burning, aching, cutting, tearing sensation CPS (Central Pain Syndrome) may be mixed with sudden, excruciating shots of pain. It is often mixed with other distracting sensations like cold, tingling, a "pins and needles" effect, a ballooning sensation, throbbing, and the feeling of a dental probe on a raw nerve.

Intense skin reactions can accompany these symptoms, such as burning, stretching, tightness, itching, or a crawling feeling that can be irritated by any light touch, sometimes just the feel of cloth on skin, which can making dressing an ordeal. Sometimes the touch of a loved one, or family member, in fun, or love, may often be a way to overwhelm the brain with the pain from CPS.

This unwelcome guest joined a party already in progress.  

Attendees include:

Massive nerve pain flare hips to toes, busting through the spinal cord stimulator like it isn’t even there.

Mid-back (thoracic) spasms, arthritic in nature, likely triggered by rain.

Low back muscle burning, deep deep pain, pain in joints.

And now this.  Central Pain.  Again.   I had this once before and when I survived it then, prayed it was a fluke occurrence.  Guess not.

How people live with this every day defies my understanding.  Folks say that about my regular pain, but I had gotten to a mental place where I could just survive.  Not sure about this.

Reclined, frozen as any movement feels like a blow torch on my skin…….my smile is faint, my mood less than stellar, my patience thin……….but the blessing of an amazing husband whose heart breaks when he sees me like this.   Don’t know how I’d do it without him.

Love him.  So much.  Love how he tenderly pulled me out of bed on the mid-back spasm entrance.  Love how he stroked my hair as I buried my face in his chest, only having made it to sitting position, yet to stand and endure the full force of the spasms.  Love how he tenderly hugs me, keeping his hands above my bra strap, being careful not to even brush his fingers across my lower back ribs to hips. 

 

If I didn’t smile, I shudder to think what state I might be in.  Smiling ministry can also be for yourself.  Never knew that until now. 

 

22 Things You May Not Know About Me

22 Things About My Invisible Illness You May Not Know

1. The illness I live with is:  Permanent Severe S1 Nerve Pain, Failed Back Syndrome and intermittent flares of (suspected) Central Pain Syndrome.  Have an implanted Spinal Cord Stimulator.

2. I was diagnosed with it in the year: 2008

3. But I had symptoms since: 2005 (Had 3 surgeries at L5-S1 in 12 months.)

4. The biggest adjustment I’ve had to make is: Learning to function/think/talk with a constant pain override - like a train whistle constantly blaring in your ear, never stopping.   To understand, put a tack in each buttock, both legs and both calves and tape them down.  Imagine occasionally stepping on a tack (to mimic the shooting/lightning strike fire pain that comes intermittently). Now function.  Ignore that pain as best you can.

5. Most people assume: I am fine because I'm always smiling.

6. The hardest part about mornings are: Waking up crying in pain.

7. My favorite medical TV show is: House, but I don't watch it anymore.  House suffers from horrible nerve pain as I do, but the way they portray him is somewhat unrealistic.  I understand why he is cranky.

8. A gadget I couldn’t live without is: Computer.  Distraction is my greatest weapon against the pain.

9. The hardest part about nights are: Besides actually falling asleep unless delirious, it is knowing that despite my best efforts, I will still wake up wanting to cry or actually crying.

10. Each day I take 20 -25 pills, supplements & vitamins. (No comments, please)  Vitamin D greatly helps my pain, for example.

11. Regarding alternative treatments I: have tried acupuncture, acupressure, EFT, CBT therapy, Massage, and more.  I actually never stop looking for something to help.

12. If I had to choose between an invisible illness or visible I would choose: Visible.  Less to explain.

13. Regarding working and career:  Never again.  Ironically, if I hadn't gotten 3 jobs during a time of uncertainty, this might never have happened to me. 

14. People would be surprised to know: that I am not exaggerating when I say that the nerve pain is 24/7 burning, SEARING pain.  They see me smile and think, "It can't be that bad".  Only my husband sees my tears, anguish and suffering.

15. The hardest thing to accept about my new reality has been: That the pain will really really REALLY never go away.

16. Something I never thought I could do with my illness that I did was:  travel again in a vehicle over 30 minutes.

17. The commercials about my illness: Don't exist.

18. Something I really miss doing since I was diagnosed is: Amusement parks.

19. It was really hard to have to give up: the ability to drive and go where I wanted.  

20. A new hobby I have taken up since my diagnosis is:  Blogging

21. If I could have one day of feeling normal again I would:  Walk barefoot and enjoy the sensations of NORMAL feet touching the ground, grass, pavement, carpet.......

22. My illness has taught me:  You never know what is going on with someone, especially those with "invisible illness".

I missed "National Invisible Illness Week" but wanted to share.

2nd Dallas Trip Update

When I won the Trace Adkins tickets at my high school reunion and even posted the date of July 2nd, I was not personally thinking this through in my head (not uncommon.  lol)  That meant 2 really close trips to Dallas and I didn't know if I could do it.  But, we're home and I'm recovering from 34+ hours of driving to and from in 2 weeks.  (not counting all the driving while there!)    

It never leaves my mind that just 18 months ago, my "driving limit" was 30 to 45 minutes.  What an amazing gift - thank you God again for the SCS - spinal cord stimulator!! 

The concert was great - 3rd row, center seats.  The biggest news was that the front row women did NOT have to all stand up and shake their badonkadonks when he sang that song, which is very good since I do not personally HAVE a badonkadonk.  lol  Just skin and bones back there, folks!  (Does not apply to the rest of my body, sadly.  lol)

Just 3 weeks late, I finally decided where I wanted to have my "birthday dinner" and we took the family to Maggiano's near Dallas.  Love that restaurant and they had never been.  This first photo is my sister Kelley, my mom Debbie and myself.  It's been a long time since we got a photo together and I love how this turned out.

Look how tall Holt has grown!!!! (sshh...I was sitting down.)  He was 6'2 the other day, with shoes on. 

My sister and her husband, Craig.

We are still playing with our new camera and trying to find the best settings.  This wasn't one of them.  lol

Sage was glad to see us - such a sweet dog.  She fell fast asleep and would have stayed there forever if Andy didn't need to get up.  lol

My BIL Jay finished his outdoor landscaping, and it is beautiful!

We're glad to be home.  Next up, moving.  We finally found a place that will be perfect (our current landlords want their house back).  Strangely, the "new" Cheri doesn't like to move anymore.  OK, all you family and friends, pick yourself back up off the floor.  lol  We're hoping the new place is somewhere we can stay until we finally decide what we want to do about buying another house or condo or RV.  lol   


Have a glorious day!

 

Central Pain Again - Am I Tough Enough?

If I have learned one thing recently, it is that I better start dealing with all the emotional stuff going on in my life right now so my body can take a break from falling apart!  As I finish healing from the appendectomy 3 weeks ago, my back decided to start burning again, just like before.  Once again, it is exactly from my bra strap to my hips and rather than being deep like my other nerve damage and burning, this is the skin level.  It honestly feels like the worst sunburn you could ever imagine and then multiply that by 10 or 100.  It is just simply BAD.

Because our youngest is on full restriction, I have been forced to do much more running around than I ever normally have to do.  That is wreaking havoc on my back, as touch is the number one trigger (going in and out of the van, etc.).  Also clothing touching my back, wind blowing on my back, basically anything that touches my back in any way.  

My normal safe place - the recliner - isn't so fun right now.  Mostly, laying on my stomach with my shirt tucked in my bra strap so my back is bare is the best place for now. 

I am praying this goes away again.  Last time, it took about a month.  For most folks who suffer Central Pain Syndrome, I don't think the pain goes away.  I am crossing fingers that mine does.  We had planned a trip to Dallas for next week, but at this moment, I could not make the trip.  Today, the pain was about 25% better during the day, but it is raging again tonight.  Dallas is 8+ hours away, and then I would have strange beds and strange chairs.  Not conducive to pain relief.  

I am once again thanking God for the Lidoderm patches that are saving my mind right now.  These are applied to the skin and can be left on for 12 hours at time. 

So during these times when everything is crashing around me and my mind is just overwhelmed, I turn to God and try to remember HE is in control.  It is hard to explain what it is like to have 24/7 burning pain even with the Spinal Cord Stimulator, it doesn't cut the pain entirely.  Most days it is just getting to be too much, I will be honest.  Not feeling so much like going to visit anyone right now. 

I have purposefully not written about the many stressors right now, not to put on "airs" but due to my belief that too much focus on negative things gives it power and makes it more real.  We can leave it at - major prayers would be much appreciated.  Hopefully things will improve dramatically within the next few weeks, but we can only wait and see.  Part of this is related to our sons and I can simply admit - I am covered up with grief.  Deep, penetrating grief.  Without faith, I don't know where I'd be right now.

Right now, the bright spot in my life is my husband and our relationship.  Focusing on us and the new challenge coming up is helping keep my mind off things I cannot change, cannot control, and must accept.

This poem/story really touched me when I first read it and talk about TEARS.  Oh my goodness, does it make me cry.  I don't have this CRPS/RSD, but the story touched me just the same.  Very similar feelings.   If you know anyone who suffers chronic pain, send this to them.  It will touch them, trust me:

Am I Tough Enough? by Traci Zuckerman

Living with chronic pain redirects your focus, tests all of your strengths, and emphasizes your weaknesses. I have reflex sympathetic dystrophy (RSD)/complex regional pain syndrome (CRPS) – it is a condition or illness that causes chronic pain that has tormented me for more than nine years.

There is a stigma that exists when you live with or have any disability, especially an invisible one like pain. You start to wonder if you have the strength to live with the never-ending flare ups and the changes that life with chronic pain brings. When you start to doubt yourself, you must reach down deep and use every bit of strength and determination you have to make it through the day.

Having to live with chronic pain is like being a prisoner within my own body. I do not have the same freedom of movement that I once did. Many of my abilities are limited or changed as a result of living with RSD/CRPS. I live each day not knowing what my body has in store for me. I never know if I will be merely stiff from swollen limbs or achy from the spasms of tight muscles or even tortured by the nerve pain that burns and sticks itself like electrical needles through my skin.

I have days when I'm shocked by pain that just appears out of nowhere. I have days when the pain slowly creeps up on me. Some days I become overwhelmed – anxious, depressed and worn out by the pain, but I always stay true to myself and try to go with the flow.

I have asked myself many times, "Am I tough enough to live like this?" I also wonder if others believe I'm tough enough. I wonder if I work hard enough at trying to deal with this. Am I trying my very best to respond in a productive way and keep myself motivated toward improving?

I get tired and worn out some days – living with chronic pain is much more demanding than a full time job. Sometimes when I open my eyes in the morning, the first thought I have is, "Maybe the RSD is gone." Rationally, I know RSD/CRPS won't disappear. I also know that the only way toward wellness is to stop looking back and keep moving forward. The memories of the things I have missed along the way are daunting so I focus in on what works today and what I can try to do tomorrow.

Living with chronic pain is like any 12 step or rehabilitation program – you must be diligent and determined to progress forward. That is why it is necessary for me to continue to have an open mind about different treatments or therapies and learn as much as I possibly can about RSD/CRPS. Continuing to explore my options has become a main focus for me – it helps me to feel like I'm in control and moving forward, rather than a prisoner to my pain and my body. I too have hope for and a dream of a life where I am not a prisoner to pain.

Over the years, I have spent a lot of time wondering if I'm tough enough to make it through this. I know now that I have made it – I have the qualities and abilities I need to stay focused as I work toward wellness. I'm determined. I'm hopeful. I'm open-minded. I keep trying. It's my choice. I can see freedom from pain and even feel it sometimes, even as I experience the challenges along the way. I know now that I am tough enough and I know you are too.
 

OK, enough whining.  Thanks for reading.  I'll perk up before the next post, I promise.  Just keeping it real.  Who knows, maybe getting dehydrated from crying will short out the nerves!  lol

Hope you are having a pain-free day!!

Central Pain Syndrome

That is what I am dealing with now - what appears to be Central Pain Syndrome, which has hit me completely out of the blue.  Entirely related to my severely damaged lumbar nerves but completely unlike any of the other pain I have experienced to date.

CentralPain.org

This new pain is a burning feeling from my bra strap to my hips, on my back.  It is only on the skin, but feels like the worst sunburn you have ever had.  You know when you got that sunburn and could hardly touch your skin to put the aloe or the cream on it?  Imagine that but worse.

Triggers:

Clothes touching
Air blowing on it
Cold air
Any touch, particularly light touch

The doctor has prescribed some lidocaine (Lidoderm) patches that I can wear 12 hours a day, to see if it can calm the nerves down.   I can wear 2 a day, and they are 10cm X 14cm, and I can cut them and put them in a bunch of different places if I need to. 

Pharmer.org

What is Central Pain Syndrome?

Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brain stem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson's disease. The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central pain syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage. Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of "pins and needles;" pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve. Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years, specially if it is related to post-stroke pain.

This is related to my 3 back surgeries, possible spinal cord stimulator procedure and permanent nerve damage in general.  I have had the numbness and shooting pain for years........this burning pain is fairly new.  I have had a smaller section that has burned for months, but it was so small and I just plain ignored it.  Had no idea it would spread, but nothing I could have done to prevent it.

I have found some yoga type pants I can wear and keep the waist band rolled down and have much less pain, so I will wear those for now until this calms down (as I hope it does), and I keep my shirt tucked in my bra strap when at home.   I am considering getting something like Wintersilks to wear under my clothes, which will keep the sensation to a minimum.

It should get better with time as my brain learns to disassociate, or so I'm told.  I'm looking forward to that.  

Question of the day:  If this is triggered by cold weather, shouldn't we live where it is much warmer, say...........Texas? 

Time to go reread my Resiliency post.  lol

P.S.  GREAT NEWS!! The Lidoderm patches do not "rip" off, they actually peel off easily.  Huge relief!