Trigeminal Neuralgia, Multiple Sclerosis and Blessings

May 12, 2011 at 5:03 pm (Beautiful Things, Multiple Sclerosis, MVD, Trigeminal Neuralgia)

Last Thursday I felt better than I had in months.  Approximately 6 weeks ago, I started to feel “twinges” on the right side of my face, my nose was ice cold and I had the “pins and needles” sensation.  These came and went, so I mostly ignored them.  After Contemporary Choir rehearsal last Thursday I was absolutely slammed with pain, above my eye, in my jaw and across my cheek.  I never, ever thought that the TN could come back.  I never “googled” anything about pain after MVD surgery.  The pain, intense pain, lasted through the weekend.  On Monday, the pain lifted a bit and I researched what was happening to me.  According to what I read, 31-36% of people with TN do have recurring pain; those with MS have an even higher percentage.  I have some really great meds, but I cannot drive or function when I take them.  However, I realized that I needed to get a handle on this, so, Friday through Tuesday I took copious amounts (within the prescribed limits).  By Wednesday, I started to feel a bit better.  Right now, I still have the pain, but it is tolerable.

Yesterday I stopped in our local Goodwill.  I hit the proverbial jackpot!  I got a pair of “Sporto” winter boots for $2.99.  I got a pretty summer dress for $9.99 (the tags were still on it, originally $90).  I also picked up this beautiful, what I assumed was mid-century ice pitcher for $8.99.

Pretty Pitcher

Once at home, I researched the pitcher.  It is a beautiful pale aqua/seafoam green (it is a bit greener/bluer than the pictures shows).  The bottom has “Universal…Oven proof, Union Made in USA, Ballerina Mist,” with a stamp of a ballerina.  It is a mid-century piece worth $35-$50.  There was a whole dinnerware set, complete with a 5-piece accessory set on the shelf.  I didn’t look hard at it yesterday because I was just drawn to the pitcher ~~ I also had spent my $$ limit 🙂  Anyway, I came home and when Danny came home, he loved the pitcher.  When I told him about the whole set, he asked why I didn’t pick it up.

All evening and through this morning, I kept thinking about that set.  Finally Dan said, “just go up and see if it’s still there!”  So I did ~~ it was!  It is a perfect 8-place/5-piece setting with 8 cereal bowls, a cake plate, covered bowl, serving bowl and sugar and creamer.  I paid $51.00 for the rest of the set.

A place setting: one of the little bowls and the accessories

I have no idea what I’m going to do with this, but it makes me happy :-))

See… little blessings.  I consider this a blessing.

This little pottery piece was $2.99 at Goodwill too.  I got it a few weeks ago.

 

It too is in perfect shape.  The bottom of this reads, “CALIF USA L83.”  I was unable to find an exact match on the Internet.

I don’t know what my physical future holds.  I need to see my neurologist.  However, I am happy for the blessings of beautiful things ~~ I truly am blessed.  AND, I didn’t have to spend much $$.

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The Mutterings of a Madwoman

May 2, 2011 at 12:40 pm (Jewelry, Multiple Sclerosis, Musings..., MVD)

I haven’t blogged in a while.  That means that I haven’t done anything stupendous worth blogging about.  I muddled through April.  I must give myself a break.  I need to talk to myself as if I was talking to my friend, Juel, giving myself props for just functioning.  I did get some good news.  That crazy neurologist, Dr. Pokharna, who told me I had mental issues, not MS, after consulting with my neurosurgeon, Dr. Bowles, has reached the conclusion that I do have MS…  Small victory!  Yay!  I am still going to make an appointment with another neurologist.

I am still struggling with chronic pain.  I do all that I can, exercising, moving, to help, but sometimes it just does me in.  It wears me down.  My pain management doctor gave me a prescription for Neurontin.  I am to take one pill at bedtime for 5 days, working up to 3 a day.  I don’t know if I can do that.  The 1 pill, even at bedtime, puts me in an altered state.  I don’t think I can/will take them during the day.  I hate the fact that I even need meds that I vowed I would NEVER take.  Be careful what you say 🙂

I am also eating way too much.  I am on the high end of what I like to weigh.  I decided yesterday to sort of take the “Special K Challenge.”  I am not registering on the site, but have decided to follow their plan.  It is simple and Lord knows I need simple.  I will report on my success 🙂

I also won a little contest.  Smarter.com is a website I look at for the trends, mostly because I design jewelry but also because I love shoes and clothing!  Their blogs are fun to read, filled with ideas even for an old lady like me!    I won a swing dress from Gaiam.com and a “fair market” turquoise necklace.    They will mail me my prizes, then I must take pictures of myself in the winnings.  I don’t win things, mostly because I don’t play the lottery or really enter contests…  I may have to re-think my contest entering.  🙂

I finished a bracelet this weekend for my sister’s mother-in-law, Mrs. P.  She gave me a box full of old jewelry and asked just that I make her a bracelet from a pair of earrings.  Once I took the earring backs off, I didn’t know what to do!  I started and stopped on this design about 4 times.  The earrings are from the 80’s and are triangle-shaped plastic with nothing to attach the wire to.  I had to figure out how to make it work.  I am also learning to work with seed beads.  I love the color freedom I have working with these little beads.

Mrs. P's bracelet

Seed Bead bracelet

A better look at the lattice work on top of the seed beading peyote stitch

I will try to blog more in the month of May.  Perhaps I will do something stupendous.  The Lord is working in my heart all the time, as I wade through the disruptive pain that is my life!!   I am working to be proactive when it comes to issues that the Lord bring to the forefront of my heart and character.  Right now, though, I’m going to take a nap!

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Patrick

July 27, 2010 at 11:05 am (Musings..., MVD)

“Be not forgetful to entertain strangers: for thereby some have entertained angels unawares.”  Hebrews 13:2

I met Patrick in the hospital when I was in for my MVD in March.  He was battling brain cancer.  I was sitting outside of my room to get away from my looney roommate, reading, and he stopped, asked if he could sit down.  I told him, “sure.”  We started to talk.  He told me about his battle ~~ it had been a short one with aggressive cancer; he told me about his life ~~ it had been a hard one.  He had no children, two sisters.  I encouraged him.  I read some scripture to him (I had my Bible with me).  I asked him if he knew Jesus.  I briefly explained the way of Salvation.  I asked him if I could pray for him and he said I could.   I prayed that he would have courage and peace, the peace that passes all understanding  (Philippians 4:7).   I have continued to pray for Patrick.

Patrick died on July 25.  I read his obituary in the paper.  I now know his last name.  He is survived by two sisters and many nieces and nephews.   I pray that God was able to use my encounter with Patrick. 

 

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Behaving My Way Through…

April 6, 2010 at 12:35 pm (Decorative Painting, Jewelry, MVD, Scripture References)

Coral bracelet ~~ my design

How is one supposed to be feeling three weeks removed from MVD surgery?  Is it okay to still need pain medicine as the nerves in my head come alive again and my ear feels like it is infected?  Is it okay to need lots and lots (and still more) of sleep?  My hair hurts at the roots.  Is this normal?  Why do I seem to have concentration issues? 

The good news is I am now able to wash my hair and I feel human again!  I showered, dressed, put make-up on in preparation to attend Easter Services on Sunday and was too exhausted to go, but I looked great!!!

It is very interesting that my devotion today focused on Psalm 119:71-74

“It was good for me to be afflicted so that I might learn your decrees.  The law from your mouth is more precious to me than thousands of pieces of silver and gold.  Your hands made me and formed me; give me understanding to learn your commands.  May those who fear you rejoice when they see me, for I have put my hope in your word.” 

I must always, in all circumstances, remember that God made me and all the junk that goes along with being “me.”   I want to be salt and light ~~ I can’t do that if I stay in bed all day!! 

To be honest, for me, the risk is that I stop doing, stop living life, just stop fighting.  I must behave my way through this day… which to me means:  to get up with darling DannyO, even if I need to lie down when he goes to work; read my Bible and pray; take a shower, think about supper, figure out my next painting project, my next jewelry project.  Those are the concrete steps I must take to behave my way through this unfamiliar journey.

What steps do you need to take to behave your way through a particularly hard situation?  I would encourage you to figure it out, even write it down if you must!  (Lists are my friend!)

Blessings to all who read this today!!

New England Sampler 3-2010

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17 Days

March 31, 2010 at 6:35 pm (MVD)

It has been 17 days since I’ve been able to wash my hair.  Tomorrow is my follow-up appointment with the neurosurgeon.  Hopefully they will remove the stitches and give me their collective blessing to give my head a good scrubbing.  My skin is very, very dry (probably from the anesthetic) and I have been using a sugar scrub to keep it exfoliated.  I cannot wait to try my new “Mally” makeup (from QVC).  When I do, I will take “before” and “after” pictures, just for fun.

I have really been watching what I’ve been eating because I cannot exercise.  When a person is 50, in order to eat, one must exercise.  My elliptical and pilates machines are calling my name!

I think I am also struggling a bit with depression.  Nothing I can really put my finger on; not a huge deal.  I am having trouble focusing long enough to get anything completed and haven’t picked up a paint brush for a week.  That is not me.

I am not going to focus on that, just acknowledge it and figure out how to move forward from it.  I am so blessed that Amanda stayed with me all last week and helped me through my first week home from the hospital.  Juel came on Monday and Jana came today.  Both are dear, dear friends and they lifted my spirits! 

I will claim new grace and new mercies tomorrow and continue to behave my way through this new life experience 🙂

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MVD ~~ Part 3: Psycho Lady and Meeting Patrick

March 27, 2010 at 2:03 am (MVD)

I am going to skip right over the passing out while pooping part of my recovery.  I will merely be succinct and say that I needed to go, I tried, stood up and the next thing I knew, four people were looking down at me as I layed on the bathroom floor.  Not one of my classier moments.  To add insult to injury, they put me on bed alarm, meaning if I took 1/2 of my body’s weight off of the bed a very loud alarm sounded!!  

Then in the middle of the night I got a psycho roommate who had decided that the louder she groaned, the more pain meds she would get.   Apparently she wasn’t new to the nurses and they weren’t giving her meds.  That didn’t stop her from ringing her nurses’ bell every 10 minutes.  Her other earth-shattering problem was that she wanted a private room and was “claustrophobic” in a room with someone else.  (As you can imagine, our tax dollars are paying for psycho lady).   I finally rang the nurse, apologized and said, “I know I have taken all of my sleep aids. What else can I take?”  She said, “You are due for a percocet.”  I replied, “Give me as many as you can.”  I slept fitfully for 3 hours. 

One more psycho lady story…  She whined (actually that’s the only way she knew how to talk) that she didn’t have a room service menu.  I lent her mine and she ordered breakfast.  I didn’t listen to her order, but when it came an hour later she marched right over to her phone, pressed the room service button and said (I kid you not), “I ordered four slices of toast with four butter containers.  There is only two pieces of toast and one butter container!!!

I begged Todd to let me go home, even though I threw up after moving around.  I promised him that Amanda would be staying with me.  I said, though, that if he would make me stay, I wanted another room.   While I waited outside of my room, in a soft chair in the sunlight, away from psycho-whining lady, the cleaning lady graciously brought my Bible and books out to me.  I was just sitting, breathing prayer, soaking in the sunlight and a man came and sat beside me.

His name was Patrick.  I think he was younger than he appeared.  He had inoperable lung cancer and they were radiating tumors on his brain.  He had been in the hospital for one month.  He had two sisters and some nieces and nephews but was for the most part, alone.  We talked.  He told me about his hard life (he did carpentry work).  He had a note paper to write things down as the brain tumors had effected his memory.  I told him about my DannyO and wonderful children.  I would imagine we talked 20 minutes or so and the Holy Spirit said in a whisper “pray with him.”  I am ashamed to say that I have never prayed with a stranger in my life, except on OB as a teenager. 

I said, “Patrick, could I pray for you?”  He said, “Sure.”  I said, “I have to take your hand.”  With his work-weary worn hand in mine, I began to pray for Patrick,  I prayed that he would have peace as he went through these difficult procedures.  I prayed that his family would bless him.  I also prayed that, if he didn’t know Jesus as his personal Savior, that he would ask Jesus into his heart.  That way he would absolutely know where he would go after death.  I told Jesus that I wanted Patrick to know that I loved him and would pray for him even as I left the hospital.

When I was finished, two tears streamed down his face.  He is facing certain death and he knows it.  I pray for Patrick even now that the Lord will send someone to him… perhaps even me when I get my strength back. 

God’s love is unmeasurable.  It reaches as far as it needs to go to meet a sinner where he/she is.  THAT is LOVE!

I am a changed woman as a result of my encounter with Patrick.  I need to be bold and listen to the Holy Spirit.  I need not be timid when it comes to sharing my faith.

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MVD ~~ Part Two

March 22, 2010 at 6:08 pm (MVD)

Surgery took an additional 2 1/2 hours.  Celeste sat with Dan for four hours and Pastor Dave, Sam Davis stopped in to check on him.

I woke up in ICU, confused, but in no pain.  Danny stayed until 5:30 then went home for the night.  Dr. Bowles said he discovered two (2) veins compressed around my trigeminal nerve and had to use two sponges to provide a cushion between the veins and nerve.  The facial spasm nerve has quite a bit of MS plaque and he couldn’t fix it…  but Botox will…

…at about 6:00 p.m. I started vomiting.  Nurse Teresa passed me on to Nurse Jackie.  I threw up every 30/45 minutes.  Jackie got permission to give me the anti-nausea meds early ~~ was not effective

March 16, 2010

I am still throwing up.  I ache all over.  My head especially hurts.  DannyO wiped my chin as I continued to dry-heave.  I remember nothing more about the 16th, except that feeling that, if the Lord wanted to take me, He could 🙂  .  I was ready to go.  I couldn’t even pray but I knew many people were praying on my behest.  Brent kept my wonderful ICU nurses busy, calling every 3 hours or so from NC to check on my condition. 

March 17, 2010

It is St. Patty’s Day.  I don’t’ care!!  They have given up on giving me anything by mouth, just a good IV.  Then Lou “pharmacist extraordinaire” found just the right “cocktail” of anti-nausea drugs and after 30 hours spent vomiting, I stopped!  🙂  The Lord’s mercy is indeed great!

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MVD ~~ Part 1

March 22, 2010 at 9:15 am (MVD)

I will attempt, over the next several days to transcribe what my thoughts were this past week.  Much of it is “chicken scratch” so I hope I can ‘cifer it!!

March 14, 2010

Spent the day very restless.  Made sure the bills were paid, called my kids and told them they were the “best thing that ever happened to me.”  Sat with DannyO on Sunday evening and watched Erin Brockovich (she was one brave lady!).

March 15, 2010

MVD surgery is scheduled.  Got up at 4:30 and washed my hair with anti-bacterial soap and dried it well.  Left for the hospital at 5:30.  While Dan drove, I texted my kids…”I love you more than you know.  Talk to you soon ❤ Mom.”

Got through the doors at 6:00 and was  immediately sent up to the 6th floor.  Quick work was made of my clothes.  They added a stunning pair of white support stockings to my wardrobe.  I kissed Dan, told him I loved him and they whisked me away to the MRI room.  Dr. Bowles drew on my face, positioned electrodes around my forehead and shaved a portion of my hair behind my right ear.  The MRI with and without contrast took 20 minutes.  I was then wheeled to the OR staging area.  I was given some happy juice and asked if there was a possibility I could be pregnant.  I retorted, “I don’t have a uterus!”  They wheeled me into a large room with big over-head lights…the last thing I remember…

In the interest of making these readible, I will break my story into about five pieces.

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Peace~Joy~Queen, etc.

March 14, 2010 at 6:40 pm (MVD)

"I'm not the average girl from your video, and I ain't built like a supermodel, but I've learned to love myself unconditionally, because I am a QUEEN."

Okay, that is just a silly picture, but my CPT partner, Jamie, bought me a bag of goodies, including a tiara,  feather boa, and milk duds:-)!  She wanted me to remember that she is praying for me.  Jana, my best friend, I know is praying for me.  My SIL, Georgina, gave me the precious gift of a Prayer for healing Mass ~~ the prayer booklet is going with me.  Michelle gave me a picture depicting Jesus as the “Great Physician,” going with me.  Thank you, Nadine, for the prayer card.  Candi, Carla, Bill… thank you for praying with me Thursday.  DB, Jamie, Bill, Cindy, Deb, Brendan, Vince, Dave, Bob… thank you for letting me worship with you this weekend; and for your prayers.  I know my Monday Art Class is thinking about me.  Tom, Robin, Aunt Lorraine, and Nancy, thank you for your phone calls.  Dave, Shelly, John and Barb ~~ we laughed so hard on Friday !!  Thank you for all the positive FB messages and TN forum messages!  If I missed anyone, don’t be offended… this brain is on overload today!!

Darling DannyO, you are my rock ~~ 30 years in May!  Amanda and Brent are my precious gifts. 

All of this to say that I am taking the prayers of legions into the operating room tomorrow.  Am I afraid?  Yes.  Do I feel this is the right decision?  Yes.  Am I looking forward to life without pain?  Yes. 

I am hopeful and full of joy.  It isn’t a stupid joy.  It is peace knowing that I am doing the right thing and will be in capable hands and Jesus will be with me.

“You turned my mourning into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent.  O Lord my God, I will give you thanks, forever.”  Psalm 30:11-12

Talk to you in a few days!!

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Nesting

March 12, 2010 at 10:25 am (MVD)

 

Sparkly Windows!

I have not nested since Brent was born in 1985.  I am nesting right now!  I’ve got my windows cleaned, taxes completed (almost), bills paid, groceries purchased, all of the important things I do as a manager of a household!  I need to take down some Christmas decorations today ~~ now that the snow has melted!

This week has been difficult, though, on so many levels.  As a Child of God, I KNOW the right things to say; I even know what Scripture to recite, but I am floundering as if my foundation is very shaky.  I had a moment of panic as I was driving to Praise Band practice yesterday… what if the anesthetic doesn’t take and I’m awake on the operating table??  I know that is very stupid, but that’s where my mind went.  Last night I dreamed that they had to cancel the operation because there was a “flood!”  That isn’t far-fetched, because we are under flood watches through Monday. 🙂 

I am finding it difficult to accept help from my daughter, Amanda.  She is coming to stay with me when I come home from the hospital.  I’m not sure why that is hard for me to do… I think because I’m used to being the Caregiver of those I love, not the other way around!  I am sure that I will be blessed and we won’t throttle each other in the week we spend together 🙂  I love her so much!

I have my DVD player, a David Jansen “Peter Ompir” art DVD set, two books, my Ipod, Bible and notebook, a new pair of slippers, some pajamas, and my robe, ready for my next adventure.  I am looking forward to Tuesday ~~ and the road to recovery!

I know that I know that I know ~~ in my brain!  Now I need to “know” in my heart!  I will continue to move forward and try to figure this out!  I have no profound statements, spiritual nuggets to impart.  I am simply a flawed human being, who is a Child of The King!

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