National Invisible Chronic Illness Awareness Week

This is the National Invisible Chronic Illness Awareness Week.  Check out this website, whether you have a chronic illness or know someone that does.    Below is a story I wrote for FW about a mother suffering from a chronic illness and her daughter who is made to walk through it with her mom.  My kids have had to do that and still are.  Chronic illnesses are far-reaching and have long-lasting effects on everyone it touches.

Mommy's Sick

The bell rang and kids flooded the courtyard of Washington Grade School. Allison looked around from the top of the steps until she found her friend, and then ran to catch up with the short, red-haired girl named Gracie. 

“Wanna come to my house and play?” Allison stood face-to-face with Gracie, hands on hips, waiting for an answer. 

“I dunno. I have to ask Mommy.” Gracie shuffled her feet, looked over at her mom who waited in the van, and then looked back at Allison. “Um, some other time, okay?” 

Allison scrunched up her face. “Gracie, you used to be my best friend!” She stomped her little booted foot and marched off in the opposite direction. 

Gracie stood on the sidewalk and watched her very best friend walk away mad. She bent down and picked up her back pack and walked slowly to her mom, trying to hold back the tears.

Rachel beeped the horn to move her pokey daughter along. “Gracie, come on.” 

“Hi, Mommy.” Gracie plopped her bag into the van and hopped in, her face bright and cheery. 

“How was school?” Sunglasses hid her mother’s eyes, as always. Gracie forgot what they even looked like.

“Fine.” Gracie looked behind her and saw Allison’s van right behind theirs. She caught Allison’s eye and mouthed the words, “I’m sorry.” Allison turned away and pretended not to see. 

“Mommy? Can I go to Allison’s house sometime?” Gracie waited for an answer, and twitched her foot in anticipation. 

Rachel looked at Gracie through the rear-view mirror. “I guess it would be okay. When?”

“Um, sometime soon. If she ever asks me again, that is.” Gracie muttered that last part under her breath

“What, Gracie? You’re mumbling again.” 

“I said, ‘whenever she asks me.’ That’s when.” She sat head down, and watched both feet as they twitched. 

“Stop thumping the back of the seat,” Rachel snapped. “It hurts my head.”

“Everything hurts your head, Mommy! I can’t go anywhere, I can’t have friends over.” The tears she had been holding back now fell from Gracie’s eyes. 

“I can’t deal with this now. Please…” Gracie hung her head, sopping up the tears on her coat sleeve. 

The drive home was made in silence except for sniffling from the back seat. Before the van even stopped, Gracie jumped out and ran inside. 

“Supper is on the table. I need to go lay down,” Rachel called to the back side of her daughter. 

“What’s new?” Gracie ate as she flipped through channels. The quietness of the house was too much so she turned the TV on loud. 

She jumped when she heard the phone. “Hello?” 

“Hi, Gracie!” 

“Daddy!” 

“What’s Mommy doing?”

Gracie sighed. 

“Oh, in bed again, huh? I’m sorry. You know Mommy’s sick.” 

Tears welled up in her eyes. She could barely talk because of the lump in her throat. “I know, Daddy. Mommy’s always sick. When is she going to be unsick?” 

“I don’t know, Honey.”

"She hates me and I hate her.” 

“She loves you. You know you love her, too. I have to go now. Tell Mommy I called when she wakes up. Okay?”

Gracie groaned, “Okay. When are you coming home?”

“Tomorrow morning. Be a big girl and take care of Mommy for me. I love you.”

“Love you, Daddy.”

Gracie snuck into her mother’s dark room. She pulled back the comforter and inched her way onto her Daddy’s side of the bed, careful not to jiggle. She ached to feel her mother’s arms around her. 

Rachel woke and pulled Gracie close, enveloping her in her arms and up against her warm body. “I’m so sorry, Honey,” Rachel whispered. “I hate being sick and I hate how it hurts you.”

“I hate it too, Mommy, but I love you.” Gracie snuggled up even closer and let the warmth of her mom’s body help heal her lonely one. 

In the morning, Gracie’s dad, tiptoed into the room and found his two favorite girls lying in bed together. Rachel lay curled into a ball and Gracie was tucked up inside. Gracie’s head lay on her mom’s outstretched arm and they both were smiling dreamily. 

“Lord,” Chris prayed quietly. “I shouldn’t have worried; You’re taking care of Rachel and Gracie just fine. We don’t know what the future holds with this illness but we do know that You are in control.” Chris climbed into bed beside Gracie and wrapped his arm around them both and drew them close. “Please help us, Lord.”

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Pond of Tears

The FW challenge topic this week is, Ow!  Well, I wrote an Ow! story but managed to get another one written where no one would know it was me.  This one came out because I had to write it so I could walk out of the darkness for a bit.  The whole time I wrote, I cried.  It was very hard.  I hope it's educational and not too emotional but I guess it's hard for me to separate the two right now.  Recovery is so hard.  A friend took me to town today and I was wiped out just getting to her car.  Next week I go back to my neuro-surgeon and get a chest x-ray to make sure all is sitll clear and then I should have a green-light to get back to work.  It will be hard, though.  I am so very weak.  So many are praying for me.  I appreciate that you pray even when you hear nothing from me for weeks sometimes. I have such a rock-steady group supporting me and bringing me to God's throne-room.  Thank you, thank you, thank you!

POND OF TEARS

Christmas and New Year’s Eve came and went.  While everyone celebrated, I sat in a hospital bed lost somewhere between life and IV pain medications.  I barely knew my name let alone what I had agreed to have done to my body.

I sit in a pond of tears as each day comes and goes and I repeat the question:  is it too late to change my mind?  Maybe the many ow’s in my life haven’t been taken care of.  Maybe it’s my cross I have to bear.  When do I make that decision?  When do I stop fighting and accept what’s before me?

I guess ow is an understatement.  Drastic measures were taken to take away the incessant, unbearable pressure in my head.  In the last eight years I’ve learned what spinal fluid is and the effects if the body messes up and doesn’t take care of the excess properly.

I didn’t know about diuretics and I certainly never heard of a shunt:  a mechanism to keep the spinal fluid flowing and draining out of the body the way it should.

It took a long time for me to get a diagnosis.  While my life waned away, while I couldn’t take part in my kid’s lives, I fought for myself, going from doctor-to-doctor to figure out if I was losing my mind or if there was really something wrong with me.  It’s especially hard when friends, co-workers, and family wonder, too.

Still in a pond of tears I type.  I have to press on.  I have to educate in case others find themselves in this same predicament.  I travel about three hours to a neurosurgeon that I referred myself into.  That alone is a miracle.  He told me I have Pseudo-tumor Cerebri.  Isn’t that scary?  Or not…  I have a fake tumor?  That made no sense.  Another name is Benign Intracranial Hypertension, high blood pressure in the brain.  There is no rhyme or reason to it.  It’s pretty rare.  Not only does it affect women but also men and children.  It’s ruthless.  It stops lives.

It’s tried to stop my life and in a big sense it has.  I work but I come home and fall into bed.  I’ve missed years of my kid’s lives and my youngest barely knows me any different than what I am.  I don’t know how my husband’s put up with me this long.  Just a lump in bed is what my family sees most of the time.

I keep fighting.  I had a shunt placed in my back but it never quite agreed with me.  I had many surgeries to fix it.  It got infected and could have taken my life if it wasn’t caught in time.  I went for months without another but life got too hard.  Fluid flowed into my head and made me feel as if I were in a dream – no, a nightmare, a nightmare that never ended.

I learned a new term:  foramen magnum.  That’s where this new shunt is now placed.  The back of my head was shaved and cut into.  Somehow, I don’t really want to know how, he maneuvered it into the space and stitched me up, also placing valves so fluid can be drawn to check spinal pressure.  Without shunts, my only other option is very painful spinal taps.  Again, big owies.

My spinal fluid now drains into my pleural cavity.  Once I got home for about a week, I realized the ramifications of a body that didn’t like that choice.  My lungs filled with fluid and I was transferred back to Chicago by ambulance.  God intervened and I still have the tube there, the place my doctor fought for and made my body fight for.  It can’t get plugged up there because it has a negative pressure, a perfect place if only my body will keep accepting it.

What if it doesn’t work?  What if I’ve made the wrong choice?  I have to step out of the darkness at some point and accept what God has for me – good or bad.  I know I can keep on because His Spirit is in me, constantly crying out on my behalf but I have to be reminded.

My ow’s in life have drawn me close to God and also made me lash out at Him.  Recovery’s hard.  I sit in a hole I’ve crawled into, big enough for one, but I feel God beside me.  I cry and hide and wait and cry some more.  I’m done.  For now.  No more.  I hope and pray I made the right choice.

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P.S.S.S.S. :)

Okay, I have to share this. I should add it to my pole dance story but wanted everyone to know what made me laugh today:

The Home Infusion person called me. They were supposed to pick up the dreaded I.V. pole today. Instead, they are sending me an empty box through UPS and we have to put the medicine dispenser in it and send it back.

Guess, just guess what stays here to do with what we will...

Okay, no one ever wants to play my guessing games: the pole. The pole stays. Hmmm... what to do with the pole? Anyone have any ideas for creative uses of an I.V. pole? Would be open to hearing them. The only requirement - you must make me laugh. I need to laugh right now. The woman that called sure made me laugh.

Up to the challenge? I already thought of the obvious, sorry. Pole dancing is OUT. Out I say. Need new and fresh ideas. If not - it's in the dumpster it goes. Well, probably will be in the dumpster anyway but...

Just thought I would pass on the funny that made me laugh today;) Hope it makes you laugh, too. The challenge is on...

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The Pole Dance:)

I can see everyone either quickly by-passing this entry or eyes glued to the screen - POLE DANCING? LOL. Oh boy. But that's exactly what I've been doing since Tuesday afternoon. I've been doing the pole dance. If anyone has spent any time in a hospital, you of course have done the pole dance, too. The i.v. pole goes everywhere you go such as the bathroom, well, only the bathroom because that's usually as far as we feel like going or maybe up and down the busy, narrow hallways.

The pole gets tripped over. The tubing winds itself around and under the beautiful backless gown so that you're doing the hula to fix yourself. You also do the chachacha as you dance the pole around the floor to free the tubing from under or around the stand. I'm sure, after this visit, I could dance with the stars. Not to say that I wouldn't get disqualified, but I could, maybe, dance with the stars. Maybe? Okay, you're right.

It also makes you feel like an astronaut being tethered to the mother ship as you make that space walk. And you can only go as far as the tether will allow. Unless of course they unplug the pole from the wall and then you're free as a bee until it starts beeping because it's out of battery and no one else in the whole hospital hears it and you just can't stand it anymore so you climb out of bed, grab the tubing, so it doesn't get tripped over, grab the cord, move the dresser, bend over and around the bed, and then stick it in the socket. Of course, in all fairness to the hospital staff, all I had to do was push the red button and someone would have plugged it in for me - but, oh well.

Oh yes, by the time I leave here I'll be able to give pole dance lessons. I wonder how much I can charge. Maybe they should hire me on at the hospital to teach new patients, you think? Okay, never mind. But I'm sure others could learn from my experience. Maybe I'll leave a set of written instructions hanging from the pole. Oh, I know - I can leave a pattern on the floor. All the patient would have to do is follow the foot prints. Now that, my friends, is an excellently... awful idea, I know. Okay.

So whatever. Maybe pole dancing isn't for the faint of heart. I'll accept my God-given talent with both pride and humility. But maybe - just maybe one of you wants to buy your own i.v. pole for home, to - you know - okay, never mind. But it is an idea. Maybe I'll market the new dance on the home shopping channel and then... I better go copyright my idea before I write anything more.

But anyway, I'm getting quite good at the pole dance but will be more than ready to leave it behind, that and the iv stuck inside my wrist. No, pole dancing is definitely not for the faint of heart but you know what? Maybe I shouldn't say. Well, okay, my husband never reads my blogs anyway - but my dad does. Oh well. Here goes - I met an especially cute guy nurse that can take over teaching the pole dance lessons. Rodsters his name, nursing is his game.

Okay, kidding aside, University of Chicago is THE best. I just love the nurses and the assistants and the staff. All of them are so helpful and friendly. And with me so far from home with no visitors, they make me laugh and become family while I'm here. Oh- I know - I could do a commercial for the University of Chicago - I could drum up lots of business for them by explaining about the pole dance, you think? Okay. Never mind. But anyway- this hospital is THE BEST and the pain clinic has me on some really good medicine that's making me feel the best I have in a long time. (Can you tell? Oh boy)

Maybe my surgeon, the great Dr. David Frimm, had something to do with that, too, of course. We must give credit where credit is due. He told me to trust him so that I did and now we will wait and trust. But mostly I trust in my God who is the great promise fulfiller. He is the One I put my complete faith and trust in and He's the one that shines through these people's faces as they live and breathe their work here in the heart of city of Chicago.

So I will close out my blog entry with a last song and dance... Aren't you glad I don't Youtube? Ha ha. I am so very funny today. Boy is this pain medicine GOOD:) Actually, it's not real strong medicine, it's just me feeling good again. Here I go - hospital gown on body and i.v. pole in hand -no, wait a minute - am I done up in back? Don't want to give THAT kind of show. Okay. Ready. Cha cha cha!!!!

P.S. I just got back from walking the pole and it is with a humble heart that I write this. I stubbed my toe on the thing, I tripped, and when I got back I was all wound up and couldn't figure out how to unwind it AND I just about had to push the red HELP button. This was REALLY serious! But anyway... cha cha cha!!! I'm good now:)

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Life Sentence

Tomorrow I am having surgery to replace two valves I have on my shunt (that regulates the flow of spinal fluid that I produce in my body - which is too much for my body.) Last night Mari was doing some research on IH (Intracranial Hypertension) and she shared with me. This was the best website I've read that described me almost to a T. I thought, since IH is so unknown, that I would share with you. Maybe you will come into contact with someone else that has IH and you will know what it is. So that is my goal.

Here is the link if you would like to research more yourself but I will just share some things I thought is a good overview.

Intracranial hypertension (IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. (Old names for IH include Benign Intracranial Hypertension and Pseudotumor Cerebri).

Oh my! I just found a video. What is really sad is that IH affects young kids and teens, too. This video shows that. And the operation this boy is having is a VP shunt which is placed in the head. I have a LP shunt which goes in my spine and I have valves in my left side that my doctor can get to so he can relieve pressure for me when I need it and tubing runs in my stomach to give the overflow of spinal fluid a place to go. So now ya know;) I can't watch this video without crying. IH is rough. Really rough as any that deal with me at all know personally.

A Patient’s Perspective

What is it like to have chronic IH? Sometimes, it’s hard to understand what a friend or loved one is going through with this illness. The following are some helpful suggestions for friends, family and caregivers submitted by IH patients.


1. Be a good listener.
It’s difficult to watch a friend or family member deal with a chronic illness that is not well-understood. It can be an incredibly frustrating experience for everyone involved. Sometimes, the best thing you can do is simply listen, without any judgment, and understand that the person who you care about is still there, despite this illness.

2. Avoid comparisons.
Chronic IH is a very real and disabling illness. But its effects are not necessarily seen on the outside. A person with chronic IH may look okay but feel terrible. As a result, the seriousness of chronic IH is often downplayed. Old names for the disorder like “pseudotumor cerebri” and “benign intracranial hypertension” only add to this misinterpretation. There is nothing “pseudo” or “benign” about this illness or the pain and disability that it can cause.

3. Be an advocate.
There may be times when you literally find yourself acting as an advocate for your relative or friend, who may be too sick be his or her own advocate. If you are a caregiver, you may be the person who helps relay your relative/friend’s medical experiences to a physician. It’s helpful to document that information, in a journal or daily record.

Educating yourself—and other people— about chronic IH is also important. Don’t be afraid to ask questions of physicians or seek out others if you feel your questions have not been answered satisfactorily.

4. Know when to give advice.
It’s normal to want to help others who are suffering or in pain, especially when it’s your daughter or your best friend. But sensitivity is important. A chronic IH headache is still very mysterious. We do not know what causes it, though lowering intracranial pressure often brings relief.

There is still a lot to learn about this disorder and its effects on the brain and body. Keep in mind that an IH headache does not usually respond to traditional headache remedies and pain medications. For some people with idiopathic IH, weight loss does not always make their symptoms better. When in doubt, first ask questions about your friend or relative’s experience. Then you can gauge whether to offer advice.

5. Today is today.
Chronic IH is unpredictable, which means that there will be good days and bad ones for the person who is ill. It’s hard to know what your friend or family member will feel like or what tasks he or she will be capable of tomorrow, which is why it’s best to concentrate on the present. Be patient because abilities can change quickly; it’s not intentional but the nature of this illness. At the same time, never give up hope that the future can bring long-awaited answers and better treatments for your loved one.

All of the above was from the Intracranial Hypertension Research Foundation from the link above. There are pins that can be ordered to help support the research foundation also, if that interests you. Thank you for taking time to read this post and thank you for your prayers.

Below is an old challenge entry I had written for Faithwriters when the topic was FEAR. It's become my testimony to living with chronic pain, I suppose.

Life Sentence

Dragged into the darkened room I could feel beady eyes all around. Sweat poured from my body; a dark, menacing odor pervaded my senses – raw fear and dread. I stood, head hung, unable to look my accusers in the eye. The jury’s verdict: guilty. I was handed a life-sentence with no chance for parole.

My crime: genetics. Up to the time of the verdict I was a relatively healthy woman of thirty-seven but that drastically changed as I was fitted with a court mandated electronic bracelet — a headache. This was no ordinary headache. It grew from a small ‘niggle’ to a raging beast that savagely dug its talons into my brain and would not let go. Just like pesky relatives, the headache pulled up the drive in a camper, set up a flag bearing skull and crossbones, and claimed not only my head but my life.

I suffered over five years and during that time I sought medical advice from doctor after doctor and was prescribed countless medications before I was finally diagnosed with something other than ‘chronic headaches.’ Days and weeks at a time I would forget who I was, a Daughter of the King, with the promise of a glorious place waiting for me in Heaven. At other times, thinking of Heaven was my only means of escape from the unrelenting pain.

The plaintiff was the devil seeking to destroy my life and in many ways he did. I lived in constant fear of the future, uncertain of the challenges that lay ahead. I merely existed through the bleakest days and unbearably long nights. Built up pressure in my head caused severe dizziness and foggy thinking. Every nerve of my body screamed to be left alone. With my head pounding and my stomach rolling I appealed the sentence crying out to God for leniency. “Why bring this charge against me? I’m tired of living in this prison of pain. I can’t go on, not one more minute. Please take it away.” My defense attorney, Jesus, was my constant companion. Bleak as life was, my faith was growing faster and stronger than I could ever have imagined.

It took the right doctor to listen to my complaints and give the correct diagnosis and then was confirmed through a spinal tap. I had my answer! The condition: Intracranial Hypertension. The symptoms: extremely painful and disabling headaches due to high levels of cerebro-spinal fluid. I am one of 100,000 women to suffer the affects of this life-changing illness. How amazing! After years of living in fear of the unknown I finally had an answer. The cure: I was told to lose weight and take a water pill to bring down the fluid. Over the months I lost the weight but still had unbearable headaches. After much begging and pleading through e-mails and phone calls, my doctor agreed to surgery.

I am now a proud owner of a body installed with properly functioning hardware, a shunt; however, it did not come without a cost. Recovery was long and hard and months later the headaches were as fierce as ever. Aware that the shunt might not correct the problem I clung to the belief that I had made the right choice. God had worked countless miracles in my life and I refused to give up hope.

It has been a little over a year after surgery, a year of more trials and tests of faith than I could count but I am relatively pain free. The ‘niggle’ remains in the background much like static on a TV screen. The old pain haunts me three or four days each month but it serves as a reminder of how I used to feel every single moment of my life. Tracing the embedded tubes down the length of my side also reminds me that IH is a chronic condition and headaches will always be a part of my life as could problems with the shunt.

My life is slowly returning to ‘normal’. I’m living and rejoicing, taking care of my family and have returned to work. I continue to live out the consequences of the higher court’s decision but it has been drastically scaled to manageable – thanks to my Heavenly Father and my ever present defense attorney, Jesus.

(Today the pain is almost as intense now as before the shunt. Shunts are definitely NOT the answer. And no pain medicine gives relief. Please pray for all those that have IH. It is literally a big pain. Thank you, thank you!)

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