What you see is not what I get

High heels and handicaps

Myasthenia gravis is an invisible illness

This rare neuromuscular disease causing profound weakness is often misunderstood because weakness is invisible.

Weakness is invisible

You never know what will happen when you spend the night in a hotel room with a stranger. I needed a room for the first night of the conference and Jamie had an extra bed at the hotel. Turns out we were well-suited to be roomies. We both got a laugh over the fact that I didn’t realize she is in a wheelchair. She is highlighting various disabilities on her blog, Jamie’s Thots, and allowed me to contribute an article about what I wish people knew about myasthenia gravis (MG).

I could have written a book; I probably will.

What I wish people knew about myasthenia gravis #IHaveHeardofMG Click To Tweet
Invisible illnesses are hard for people to understand

I consulted my MG brothers and sisters around the world and posed the question, “What is one thing you wish people knew about myasthenia gravis?”  I tried to include every issue raised, hence enough material for a book.

2 Corinthians 1:6, “If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer.” NIV

I hope you will read my post (which has already been shared about 500 times!) on Jamie’s blog.

READ MY POST ON MYASTHENIA GRAVIS

Click HERE to read my guest post.

Thanks for the support from fellow MGers #IHaveHeardofMG Click To Tweet
I WOULD LOVE TO CONNECT

If you are visiting my blog, I would love to send my weekly posts to your inbox. I’ll need your email address above the JOIN ME ON THE PORCH button.

I would love to hear from you on my Facebook page too, especially if you or someone you know has myasthenia gravis or a related chronic illness.

I have found blessings in adversity and want the opportunity to encourage you.

And speaking of Jamie, I recently interviewed her on My Journey of Faith radio broadcast. You can listen HERE.

2 Corinthians 4:17, “For our momentary light affliction is producing for us an absolutely incomparable eternal weight of glory.” HCSB

Sharing spreads awareness. Thanks.

 

While you were praying, I was putting

While you were praying

 

It’s not funny.

Oh I attempted a little humor, but really, it’s not funny.

All the way around it was an epic fail.

 

On Christmas Eve, I had a tingly itch on my back. When I scratched, my fingernails felt like a hot razor on my skin. Then I felt a linear ridge where two weeks of pain were attributed to an injured rib from an eye-bulging, incessant cough with no identifiable cause which had plagued me for eight weeks. I lifted my shirt and looked in the mirror to see reindeer tracks on my side. See that’s a joke, but since I am obviously terrible at jokes let me explain. As a consequence of taking powerful immunosuppressants to control my disease, I developed shingles.

I thought of a clever play on words (in case you didn’t know I like words) so I posted on my  Facebook wall,

My new favorite Christmas song is Shingle bells Shingle bells.

I was trying to be funny and the pain wasn’t too bad

It was a rare December day with phenomenal weather; abundant sunshine, little wind and record-breaking, seventy degree temperatures. I must have gotten the super juice with my last IVIG infusion because myasthenia gravis was behaving quiet nicely too. As an added bonus, my son was home from college. Life was good. So after I posted, I headed to the golf course and managed to play four holes.

Meanwhile replies to my Facebook post blew up. As I read them I envisioned a community wide prayer vigil cranking up.

And I was on the golf course

1 Thessalonians 5:17, “Pray without ceasing.” KJV

Apparently my post evoked visions of me writhing in pain, valiantly trying to keep my chin up and encourage others with my, albeit limited, wit. Realizing I mislead people, I attempted to paint a clearer picture, so I posted a silly update,

Well after further testing it appears I was actually run over by a reindeer in my sleep.

I expected all manner of comments about drinking eggnog or vermin in my yard. Nope, people were still praying for me. Honestly, the pain was not intense. Tendonitis in my elbow, migraines and a ruptured disc in my neck caused far greater suffering. Only a few people recognized my flailing effort at hilarity and one suggested Rashing through the Snow, as an alternative to Shingle Bells.

Then it got ugly

It was an ambush. Either someone whacked me in the back with a sledgehammer or the virus viciously invaded my spine. My valor quickly turned to whimpering and suddenly I would have traded shingles for ten migraines. Maybe I deserved it; probably so. Prayers, uh yeah, I desperately needed them now. The curtains closed on my satirical routine. Since I am a lousy comedienne anyway, I suppose I will stick to more serious matters. I should have known years ago when I offered to draw my kids a map to the dishwasher and they told me, “Sarcasm does not become you.”

That’s too bad. Occasionally I like it

Forgive the hint of snarkiness, admittedly my sense of humor is a little warped and my posts aren’t always taken the way I intended. Sometimes I am teasing and taken too seriously. So to set the record straight, I do not have cancer, I do have shingles. The prognosis is good, however my funny bone is terminally ill. Sorry, I’ve got to stop. If it’s any consolation, my golf game was terrible. A foreboding discomfort in my back affected my swing. I guess I probably deserved that too.

Please pray for me

In all seriousness, I truly covet your prayers. I had no idea how much I needed them. Your prayers and encouragement mean the world to me. Please keep praying for me. Pray for my strength. Pray the words of my mouth would be pleasing to the Lord. Pray for world peace  and pray for your lost neighbor. But don’t worry about a few red bumps, I’m trying to laugh it off.

Colossians 4:4, “Pray that I may proclaim it clearly, as I should.” NIV

Humor me and laugh. Don’t take life, or me, too seriously.

And next time, you play and I’ll pray for you

Deal?

Philippians 1:4, “Always praying with joy for all of you in my every prayer.” HCSB

If you have a specific prayer request, email me privately: vickie@vickiepetzhenderson.com. I am dedicating January to pray for you.

Praying for you with joy #Phil1:4 #prayhard Click To Tweet

I made friends with my enemy

I made friends with my enemy

Strength is measured in how you handle weakness.

I’m trying to find the sweet spot; the balance between love and hate. I hate it but I need it. Since I apparently can’t function without it, I’m  learning to live with it. Strength is measured in how you handle weakness.

ANDRENALINE

Although I haven’t been on a roller coaster since I developed myasthenia gravis, I love the feel of wind in my hair and adrenaline in my veins. The beating of wings in my stomach just before the car reaches the peak and plummets down the big drop gives me a rush. Except I am stuck there. Welcome to the world of steroids. Stuck at the top, anticipating the thrill but the thrill never becomes reality and the feeling never goes away. It robs my sleep, it robs my bones and to be honest, it makes me a little nutty at times. I suppose there is a reason it’s called an emotional roller coaster. I love roller coasters, but not emotional ones and I hate prednisone.

1 Peter 4:12-13, “Friends, when life gets really difficult, don’t jump to the conclusion that God isn’t on the job. Instead, be glad that you are in the very thick of what Christ experienced. This is a spiritual refining process, with glory just around the corner.”MSG

NECESSARY EVIL

A couple of months ago I was riding my bicycle short distances and I hiked to Hawksbill Crag, then I got cocky. Six days late on my IVIG infusion and and determined to wean off prednisone, my optimism convinced me remission was around the corner. When I thought I was strong, I got weaker, not just physically. Now I know, the evil steroids are necessary and I must stay tethered to the pump on a pole for seven hours every three weeks. Period.

James 1:2, “Count it all joy, my brothers, when you meet trials of various kinds.” ESV

TETHERED

The key to finding joy in trials is to stay tethered to the One who knows your pain, knows your limitations and suffered innocently so we wouldn’t be separated eternally. As soon as I get stronger I tend to drift. I think I can forgo the remedy. It’s the nature of the beast-the disease and my spiritual walk. So I get out my Bible, my index cards and my prayer journal and attach myself to Jesus Christ. Some days I just need a little more tape. My heart is prone to wander and must be tightly bound.

1 Peter 4:1, “Therefore, since Christ suffered in the flesh, equip yourselves also with the same resolve-because the one who suffered in the flesh has finished with sin.” HCSB

FIX MY EYES

My moon face is gone though I still cringe when I see photos of myself. Sorry, I’ll work on the sin of vanity another day. By the way, is that camera lying or did someone take me apart like Mrs. Potato Head and put my eyes back on all wonky? Goodness, I think I’ll throw the mirror away. I admit I am dependent. I resolve to look up and focus on the joy.

Hebrews 12:2, “Fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.”NASB

ENDURE

At 5 milligrams of prednisone the diabetes melted away and the fatigue was conquered, but I couldn’t do anything. I know I look normal, you can’t tell when I am struggling to chew meatloaf. When I had to rest after applying makeup it was time to make friends with my enemy, so I increased the dose. I want to live a little. Actually, I’m greedy. I want to be strong and firm and steadfast-physically and spiritually. Oddly, It requires complete dependence.

1 Peter 4:10, “And the god of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.” NIV

We all have weaknesses. We all need to be tethered to Christ. He is strong and able to hold us together. Storms are inevitable and some are hurricanes. Make sure you are tightly bound to the Rock. Anchor yourself to Him and you will survive. So will I.

Strength is measured in how you handle your weaknesses Click To Tweet

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It’s not beginning to look like Christmas

It's not beginning to look like Christmas

It’s not beginning to look like Christmas at my house.

Truthfully, it looks more like Wednesday.

My Australian shepherd missed her weekly grooming appointment so clumps of fur collect near the baseboards.The dishwasher is full and I forgot to buy Cascade despite six trips to the grocery store in the last week. It doesn’t look like Christmas at all; it looks like Wednesday, the day after Pepe Le Pew was evicted for the odiferous commotion he created under my house. So yeah, it doesn’t smell like Christmas either.

CHRISTMAS PAST

Usually I haul large, exquisitely-painted Mary and Joseph out of my walk-in attic when Thanksgiving is over. I have the desire to arrange wise men and camels on the coffee table, but I do not have the ability. Christmas is plentiful up there in the attic, thirteen stairs away. Until two years ago I relished the thought of making seventy-five solo trips up and down the beige carpeted stairs, but now I am down here where it’s Wednesday and Christmas is up there in the attic.

And I can’t get there.

MY HEART’S A WRECK TOO

This year my Christmas spirit is jealousy. Oh I’ve seen your posts displaying lavish tables, overflowing mantles and stylish trees wrapped in mesh. That’s nice. Really, I’m glad for you. Maybe the wave of nausea was caused by my medications, anyway, my own inability continues to frustrate me. Traveling delayed my infusion which flared the weakness from myasthenia gravis. Now I feel helpless and useless and selfish. I want to focus on Christ this Christmas but I can’t get the focus off myself.

Romans 7:18, “For I know that nothing good lives in me, that is, in my flesh. For the desire to do what is good is with me, but there is no ability to do it.” HCSB

ADVENT

The Latin word is Adventus, which means coming. Unless you count opening foil-wrapped chocolates popped out of a December Hallmark calendar, last year was the first time I intentionally observed Advent. The Greatest Gift (Ann Voskamp) added meaning to the season, so I’m making it a personal tradition.

Isaiah 55:6, “Seek the Lord while he may be found; call upon him while he is near.” ESV

COMING

This season I come with need. I need hope and joy; I need Jesus and I need strength. My desire is to come like Mary, who was full of new life, like Joseph who came obediently, like shepherds who came expecting, like wise men who came worshiping.

So I am bringing my need and my flesh and asking Jesus to come. Come and make me:

full of new life

obedient

expectant

worshipful

Come. Come Lord Jesus. Come into my messy heart.

O Come, O Come Emmanuel

Yes. Come Emmanuel-God with us.

Matthew 1:23, “Behold, a virgin shall be with child, and shall bring forth a son, and they shall call his name Emmanuel, which being interpreted is, God with us.” KJV

Come into my mess Lord Jesus #advent Click To Tweet

INVITATION

You won’t get an invitation to come to my house this week because it looks like Wednesday instead of Christmas. The lights are tangled in cardboard boxes and wreaths are still draped over wire clothes hangers suspended on a rod. Someone will have to carry my tree down the stairs and I am not sure who I will entrust with the nativity. It’s a mess, inside and out. But I want to focus more on making it look like Christmas in my heart, where it counts.

1 Samuel 16:7, “…For the Lord does not see as man sees; for man looks at the outward appearance, but the Lord looks at the heart.” NKJV

NEEDY

This year I come empty. I come thirsty with my soul-barren self and know I am not where I need to be, but inviting Him anyway.

Come to the season needy. Is there any other way?

Revelation 22:17, “The Spirit and the bride say, “Come!” And let the one who hears say, “Come!” Let the one who is thirsty come; and let the one who wishes take the free gift of the water of life.” NIV

MY INVITATION

If you’ve accepted my invitation to join me on the porch, thanks. Writing is more fun when you read. If you want my posts in your inbox, enter your email address and you will receive it on Saturdays. Older blogs show up on Facebook every Wednesday. I invite you to join me on the porch, but please don’t come inside the house until after Friday. Thankfully, help is on the way.

Good days, bad days and part-time handicaps

Good days and bad days

Yes, you saw me riding my bicycle again. Yes, I have a handicap hang tag for my car. What about it? I have good days, bad days and part-time handicaps.

Part-time handicaps and part-time faith

I saw the recognition in his eyes when I pedaled past him walking his dog. My feet securely clipped to the pedals, I logged about ten miles. When I got into my car, I noticed the blue edge of my hang tag peeking out from behind the papers in the side pocket. I haven’t touched it since June. You see, I have part-time handicaps and part-time faith.

If you know my story, you know the Lord mandated a year of Sabbath rest for me. For exactly fifty-two weeks I intermittently used a wheelchair or scooter and consistently parked in handicapped parking, IF I was even strong enough to get out of the house.

My other handicap is gradually improving too. I am able to play nine holes of golf as long as I don’t waste any effort on practice swings.  I finally look normal. Well, I definitely have a new normal.

THE OLD NORMAL

I was caught in a trap of endless activities. Honestly, it was stressful and exhausting; exhilarating and rewarding; and most of all it was fun. The shrill tone of my beeper routinely interrupted my sleep and created extra-large bags under my eyes so big I needed a porter to carry them. About the time I crawled back into the comfort of my bed and settled in, my alarm rudely called me out. Despite arriving to work early, I got behind and felt oppressed under pressure to hurry through the day life. The phone rang incessantly and I felt as if I were drowning and people were pouring water over my head. I developed super-human powers such as inhaling meals, changing into scrubs at the speed of light (sans phone booth) and leaping up the stairs in a single bound. Well, maybe not a single bound, but close. It was the most demanding, most fulfilling career I could have possibly chosen.

I wouldn’t trade it for the world

Ecclesiates 3:9, “What does the worker gain from his struggles?” HCSB

MY NEW NORMAL

Instead of being the doctor, now I am the patient. Rather than worrying about how many patients are on my schedule, I have to schedule my life around appointments. I exceed my maximum out-of-pocket expenses for insurance every year by spring. Instead of writing prescriptions, I fill them – lots of them. If I conscientiously coordinate my refills I can pare down my pharmacy visits to merely twice a month. I only swallow twelve pills a day now, which is an improvement from sixteen. I never know how I am going to feel today or tomorrow. As an added bonus, every three weeks I spend an entire day in the hospital for an intravenous infusion.

I wouldn’t trade it for the world

Hebrews 13:15, “Through Jesus, therefore, let us continually offer to God a sacrifice of praise-the fruit of lips that openly profess his name.” NIV

BLESSINGS IN ADVERSITY

It may seem odd, but myasthenia gravis has brought many blessings. I would never have chosen it, but I’m not sure I would trade it either. To be completely honest, some days I hate it. Actually, every day I hate it. Strangely, as I have improved I am struggling more to accept my limitations. On days I feel like “normal” is almost within reach I do too much and pay the price. I wind up wasted for a couple of weeks. When I am tempted to be sad, I remind myself of the gifts I have been given through chronic illness. I have been given the gift of time. Previously, I wondered if I would have enough time in the day, now I wonder if I have enough day to fill the time. Fortunately, I have discovered how much I enjoy spending time with my parents. I have reconnected with dear old friends and made new ones who are really special. I don’t miss the alarm, my fingernails cut to the nub or those over-sized bags under my eyes. I do miss unlimited strength, the ability to exercise and consistently feeling good. I force myself to focus on the joys of sitting on the porch, drinking a leisurely cup of coffee, mani/pedis, time with my kids, lunch with friends, blogging, speaking and writing.

James 1:17, “Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.” ESV

NOT WHO I AM

Last week I had a procedure done. When the nurse brought the consent form, I signed the wrong line. I’ve probably signed that form ten-thousand times. Out of habit, I signed on the physician line instead of the patient line. Funny how my old identity seems so long ago. On rare occasions someone calls me Dr. Henderson, it sounds odd. It is what I did,  but it’s not who I am.

Proverbs 22:1, “A good name is to be more desired than great wealth, favor is better than silver and gold.” NASB

Today I have been hardly able to get off the couch. Oh you saw me on the golf course? Well, that was my good day.

I wouldn’t trade it for the world

I don’t know all of the reasons God’s chose this path for me, but as long as it is His plan, I will walk it. Unless I am too weak, then He will have to carry me. I have good days, bad days and part-time faith. Whatever situation you are going through, I encourage you to open your eyes and look for the hidden blessings. Offer God a sacrifice of praise, because if you focus on the pain you will soon need anesthesia. I know, but I try not to stay there. Fix your eyes on the blessings in adversity and allow God to use it for His good purposes.

And you won’t trade it for the world

Focus on the pain and you will soon need anesthesia#sacrificeofpraise#rightsideuplife. Click To Tweet

Romans 8:28, “That’s why we can be so sure that every detail in our lives of love for God is worked into something good.” MSG