Category: Health (Page 1 of 2)

When They Say You Are Crazy

A year ago today, R (soon to turn 16) was having surgery to remove all cartilages from her 4 lowest left ribs, along with a little bit of sharped bone. Little did we know that in May, she would have another rib surgery on the other side, along with that accompanying hospitalization.

Then 30+ faints over the past 4 months and 1 day.

Or to 2 concussions, blindness, hair loss, significant hearing loss, and some memory issues.

Ten hospital night stays broken up between 4 different hospitals.

Seven ambulance rides (including a 4-hour ambulance ride to one out-of-state hospital).

Seen in 5 different hospital systems in 3 different states.

Undergone many more pokes, tests, draws and scans than anyone should have in a lifetime.

Not In Her Head

After a dozen tests and appointments in another big hospital, we have confirmation on some suspected conditions, as well as some new diagnoses. Multiple doctors in two different state have been telling us that her symptoms were only physical manifestations of emotional trauma. (Once this theory was proposed by one doctor, everyone who encountered her chart thereafter, jumped on that premise. We’ve been battling this mindset for months now, while watching our daughter continue to physically deteriorate, growing worse by the day.)

We would not settle for the “emotional” answer, even when a panel of a dozen doctors in one hospital room included a passionate young intern who fought tears as she proclaimed, “Until you can believe, and help your daughter accept the fact, that there is a psychological basis for her illness, she will not, can not, start to get better!” Let it be known that she has at least four document-able PHYSICAL health issues at play here! I am so thankful God did not allow us to settle for that garbage-can explanation!

How To Pray

If you are praying with us, we are specifically asking God to continue to give our current doctors great wisdom and insight, and to bring hidden things to light. While all the guys stay here for work and school, I will fly R. back again in another week and a half for even more testing. (My husband’s job has been so flexible in allowing Rick needed time off and the ability to work remotely. Thank you also to family members who are significantly aiding with transportation and medical costs!)

Less than 24 hours after our last appointment and diagnosis there, our oldest was tentatively diagnosed, back here at home, with a separate serious issue. We are in a 2-week testing phase to see if we can confirm his working diagnosis, or if a new approach will need to be taken with his care. If he has what his doctor thinks it is, the answers are hard, but we would finally know what we are up against. If he doesn’t respond favorably to treatment trials, we will wave to expand the search into other specialty field and do some deep digging!

God is good ALL THE TIME. We are in a wild storm, but my Jesus walks on water and will hold us every step of His perfect way!

First Adult Job

With all else going on, I will be starting a new job on Monday morning! Because we were getting so many emergency calls from the school each week, we got to the point, around Thanksgiving, that any time our daughter was on campus, I would also be at the school. My days were typically spent sitting in the front office or clinic all day, volunteering however I could, while waiting for medical code calls to be announced every time our girl fainted.

By being on campus, I was immediately available for feedback as the school’s emergency response team evaluated each situation to consider ambulance need. After a few weeks on campus, I was asked to apply for an open position. I soon filled out my first job application in over 20 years (for a job I did not get offered back then). My interview was shortly before Christmas. It is exciting to have a reason to be there each day, other than waiting for my girl to go down!

 

 

Service Dogs

Last weekend we met with a women from our church who, for half of her life, has dealt with similar fainting issues  to our daughter’s (recap in next paragraph). R. has a service dog to detect her coming faints and give her time to get safe before loosing consciousness. We visited R.’s house for about two hours. Half an hour after we got there, the dog got frantic and rushed up to our girl, licking her face incessantly. Within a minute of this sustained behavior, our girl fainted! It was astounding watching this dog exhibit her God-given perception to know our daughter was about to go down!

Our 15-year-old has fainted about 30 times in the past three months. We are headed to another out-of-state hospital in a few weeks and could be there anywhere from about 3 days to 3 weeks. We have a theory, but are headed to a top autonomic specialist to try and get this officially figured out, since, so far, she has been through three local hospitals plus two really large research hospitals in the next state over, all without clear answers nor help.

If God wills to open a HUGE door that only He could, we also desire to take our 19-year-old for evaluation by the same doctor. Our son too has been quite ill over the past month, unable to attend almost any school, needing to resign from his job, and so fatigued he is unable to walk from bedroom to kitchen or drive half a mile! We are working with the hospital to try to get a last-minute cancellation spot, but know that the flight itself has the potential to further damage his health, so we are asking God to do what is very best and safest for him.

We’ve spent the week researching various kinds of service dogs, along with the added twist of severe dog allergies throughout the family.

We think we have narrowed down our preferred dog breed to one of a few kinds of Doodles (half Poodles). We are looking for a medium, or standard (huge) size, to be able to physically protect our girl. And the dog needs to be 2nd generation (grandparents are one dog such as a Retriever and one Poodle, while it seem that parents are Both 1st generation Doodles or a Doodle and a Poodle).

Thanks pixabay.com/en/labradoodle-doodle-dog-dog-park-1696004/

Poodles are hypo-allergenic (because they have hair rather than fur and shed little) and are highly intelligent dogs. In and of themselves, Poodles don’t tend to be easily trained, thus aren’t the best candidates as service dogs.

Mixed with a Golden Retriever (for a Golden Doodle), a Labrador Retriever (Labradoodle), or any one of several other breeds, these half Poodles maintain high intelligence levels, while taking on the traits of easy train-ability found in their Retriever parents. Doodles make ideal service dog candidates and, by second generation (some breeds of Doodle, bred back with Poodle), become hypo-allergenic.

No Guarantee

Faint-detection cannot be taught or trained. A dog either has it or it doesn’t. In our single week of research, it seems that of these “ideal candidate” Doodle dogs, only an estimated 25%-40% are born with an innate ability to warn of a pending medical event. Most studies seems to have been done on seizure- or diabetic-detection dogs. Syncope (fainting)-detection dogs, through formal services, take 2-4 years and between $20,00-50,000, to obtain.

Because we really can’t afford to wait for (or the cost of) a formally certified dog, we are visiting humane shelters, pounds, and pet stores. The dog that literally has been a life-saver to our new friend R., who knew when Ruth was about to faint, was from the humane society!

Yesterday we spent half an hour in a pet store with a 2nd generation Labradoodle puppy that was adorable, but when Ruth fainted (pretty much a daily occurrence right now) there, it did nothing dramatic to clearly indicate a coming faint, so we will keep looking. Perhaps the dog was too young to differentiate spastic puppy behavior from faint-alert. Before we spend $3,000 on a designer dog, we have got to know it can identify her faints!

Once we find that dog, we can start the lengthy and pricey process of formal certification training that would allow her to take him in public places like her school. Even having a dog like this just in our home will be a huge blessing, but once service training is initiated and the dog can accompany her everywhere, we hope to significantly cut down on faint-related injuries (seven Emergency Rooms, with five ambulance rides, since this all stated just 3 1/2 months back).

 

Hospital Blankets Make Great Tree Skirts

I have started volunteering at our daughter’s high school each day and staying on campus for the entire seven hours. (Her school staff has been AMAZINGly supportive through this crazy medical journey!)

Writing is, by default, taking a sideline in my life for a bit. I am, however, over-the-moon to announce that Deb Gruelle and I will be team-teaching a workshop at Mount Hermon in April. I will also be leading a course entitled Praise, Worship, Jubilee! as we celebrate the 50th anniversary of this conference. If you have ever dreamed of writing, I so hope you will join us.

Life is crazy, but we do have a pre-lit Christmas tree up. My hubby and youngest set it up as a surprise one Saturday in early November.  I don’t have the time, energy, nor gumption to decorate it this year, so my husband bought 4 dozen candy canes and our 12-year-old had fun hanging them while he was home sick one day last week.

For a tree skirt, the white blankets they sent home wrapped around our girl during her latest ER trip (we are now at 6 ER visits, several via ambulance, in the past 2 1/2 months) made a lovely addition. Setting out our new Advent Calendar next to the tree will probably be the extent of this year’s decoration.

Her medical record says she “pulled her hair out,” but I can testify she lost half of her hair volume (in patches as large as 4×6 inches, as well as in showers of individual strands), all within 36 hours. She was not pulling it!

We shaved her down to a tiny fuzz of hair, since what she had left was so patchy and stringy. Just a month later she went into the shower with hair and came out with a dozen new bald patches! Since her hair was not really even long enough to grab that second time, she couldn’t have pulled it out if she wanted to.

We are waiting to see an autonomic specialist at a major hospital in Arizona, and hope to find answers there. We have January appointment currently scheduled. A large chunk of my daily time is spent in multiple calls to this clinic, waiting on hold, trying to find out if any new cancellation slots have become available over the past two hours, in hopes of getting to fly down to be seen before Christmas.

We are tired.

Yesterday’s advent reading greatly blessed my heart. It is perfect for my reader-friends in our In Darkness Sing community:

“The people who walked in darkness have seen a great light; those who dwelt in a land of deep darkness, on them has light shone.”
Isaiah 9:2 (ESV)

It isn’t about the frills of Christmas. When you strip joy down to the most basic of elements, this season is about the Hope brought to earth by One Baby.

 

 

 

Crisis Amidst Crisis

If you’ve been following along on our 15-year-old’s medical saga of the past two months, you know things are rather crazy in our home. I’m sad to say that this faint-free spell only lasted a week. We’ve had code blue calls from her school the past two days in a row again.

Our nerves are so tightly strung that the phone can’t ring or a door open without us physically jumping, every muscle tightly wound, ready to respond to the next medical crisis. Rick called to say, “I love you,” yesterday, and instead of answering the phone with my typical “Hi Handsome,” I saw his number on the screen and grabbed it with a panicked, “Is everything OK?” God is the anchor we are clinging to, but this is HARD!

Cast all your anxiety on him because he cares for you.

While our 18-year-old was driving our girl and me to her doctor yesterday, our son nearly had to pull over the car because of sudden, rather intense chest pain and trouble breathing. He got us safely to her doctor, I called my mom to come take over with R., then I rode along with J. who was able to drive himself to urgent care two blocks away. A breathing treatment did wonders and our oldest is now carrying an asthma inhaler. So thankful this medical issue was quickly addressed and had a cut and dry solution!

When anxiety was great within me, your consolation brought me joy.

Bald Blind BEAUTIFUL

Yesterday, our daughter posted a selfie on instagram. In her own words, her hair “was falling out in handfulls, and I told myself I wasn’t going to loose my hair to sickness or medications, and if I was going to be bald it would be because I was confident enough to not feel like I need my hair to protect me or make me beautiful and to be able to shave it off myself, so that’s exactly what I did”.

In synopsis, since September 8, we have been in two ambulances, three emergency rooms, countless doctor’s offices, and inpatient in hospitals in two states, three times. We know a ton of information about what is NOT going on, but no clear answers about why she is struggling.

She hasn’t fainted in three weeks now. She is still totally blind (lost eyesight within 48 hours). Over half of her hair fell out, in individual strand cascading like a waterfall, (over two weeks) then in huge chunks as large as 4×6 inches of baldness at once (over 36 hours)! We broke down and shaved the remaining hair on Wednesday after another huge section on the side of her head came off with the beanie she wore to school on Wednesday to camouflage the large patch missing off the back of her head. One area fell out in a nearly-perfect heart shape, so once we shaved her remaining hair to ¼ inch, the bald heart looked intentional.

Today will be our third doctor’s appointment of the week. She is very frustrated by the amount of school she is missing. We are tying to emphasize that our priority is her well-being. The teachers, school staff, and her counselor are being fantastically supportive. The school started her on learning Braille on Wednesday and started mobility safety training with her VI (visual impairment) teacher today.

We are on the waiting list for a referral to an “undiagnosed conditions” program out of state. Please join us in praying that she will be accepted into the program (they receive so many applications that only a small fraction of kids actually get in). Also pray for doctors to have wisdom to figure out what’s going on and be able to help her. According to God’s perfect will and timing, we are simply requesting full healing for our girl, whether He wants to accomplish that through the common grace of medical aid, or to move miraculously to bring about dramatic healing that glorifies His name by leaving the medical community without explanation!

It is a HARD road we are walking. (If you don’t know the backstory, I told more at missed-deadlines and literal.) We are clinging to God’s grace through the darkness.

I cry to you, LORD;
I say, “You are my refuge,
my portion in the land of the living.”
– Psalm 142:5 (NIV)

Not The CODE BLUE I Know

Our school’s “Code Blue” is NOT the same as a hospital flat-line code.

Just sayin’.

This would have been really nice information to know before one of our kids’ schools called me at 9:30 this morning, to say they had to call a Code Blue on this kid today!

 

Our school’s code blue simply means “serious medical concern”. It is an all-staff call for medical assistance, not usually a statement of resuscitation needed!

The cardiologist’s decision late yesterday afternoon, to try to cut medication dose in half, was an utter failure.

The good news is, this child was on a 48-hour heart monitor, so whatever the heart did or did not do during this episode, is now recorded, and will become known early next week when the test gets read.

We went to the orthodontist at noon, as that appointment has been rescheduled 3 times, due to medical events, and was now WAY overdue. I only earned a few eye rolls from my child when I insisted on caution at the speed the dentist chair reclined on was straightened back up afterward.

We also tried to go get my temporary orthotic for my toe, across town, only to find the staff left at noon today.

*sigh*

Otherwise, my child is now home for the day, as the school wouldn’t risk the liability of further attendance today, even though they have been feeling fine since half an hour after the incident.
Exciting times.
Yet we will praise Him!

What a lead in to the announcement I was typing up when the phone rang…

I’m launching a new community for my author page TODAY – facebook.com/groups/InDarknessSing – for all kinds of griefs and heartaches, like infertility, pregnancy / infant loss, death and bereavement, brain injury and stroke, chronic illness, marriage or parenting struggles, disappointment, disability, discouragement.

Please come check it out. I’m trying to grow my numbers really rapidly as publisher eyes are on this project. I hope to build a real place of support and encouragement where heavy hearts find hope in Jesus. Please spread the word!

On my PAGE, facebook.com/HarvestingHope, I try to gift you with near-daily inspirational content to uplift and encourage you. It’s my “give-out” page, yet I know it is hard to interact as a community here.

So today I invite my readers to a private GROUP where we can interact together and make friends. Please join me at facebook.com/groups/InDarknessSing and share this link with all your friends looking for a home of hope.

When you join, AND EACH TIME YOU SHARE THE LINK and leave a comment and link to your share, there on the group, I’ll enter you in a give-away! I’m planning to draw a gift winner ever 100 new likes over there. Share however you can: your blog, message boards, social media like Twitter, Pinterest, Facebook, even word of mouth (just have new members tag you, so I know to count your word of mouth share that led a new friend there).

Please be a Burden Bearer and help lift one anothers’ loads, as we strive together to sing praises to, and worship, our loving King, the LORD Jesus Christ, in the midst of our deepest struggles, and darkest trials. InDarknessSing is a community where my readers can joyfully fellowship and encourage one another through ongoing interaction.

Tired

I just took my final 4 mg dose on methylPredniSolone! I can’t say how glad I am to be DONE with these six days of mega steroids (Wednesday was 167 mg within 13 hours)! 
Yesterday was rough. Water therapy consisted on sitting on the pool steps for 45 minutes and struggling just to stay upright and not throw up, in the buffeting waves produced by 20 ladies doing the water aerobics I typically fully participate in. 
I was EXHAUSTED all day yesterday and was in bed for the night by 7:30. I got close to 10 hours of pretty solid sleep (awake several times, but usually just long enough to pray for my husband on his men’s retreat, then roll back over and quickly fall back asleep, as opposed to many several-hour stretches of wakefulness this week) and since I’ve not slept more than a very few hours in any 24 since Monday, this was an AMAZING gift! I’m still far from feeling 100% today, but SO MUCH BETTER this morning than yesterday!

Breaking Up With Bed

On this date of July, 2010, I wrote this resignation letter:

Dear Bed,
You are a faithful friend. We spend many more hours together than most. I know you well and am thankful for your comfort. But may I be honest and say I really would prefer to spend much less time together from here on out? It’s not you, it’s me. I really would like to move on from this dependent relationship!

Today, I wrote this prayer:

Lord, thank You that chronic illness is in a more manageable season for me right now. Thank You that You did grant the desire of my heart to need less hours in bed that year, blessing my kids and husband to get to know a fairly normal-energied mom/wife for several months. Thank you that every day I’m gaining a little more ground from the strokes that put me down harder than I’d ever been before, less than 16 months after this day of desperation. God, You are good! You are faithful!

What’s New

It’s 95% sure…

…that I do NOT have thyroid cancer. I do have multiple thyroid nodules that are likely benign. The very fact that there are multiple, points to a greater likelihood that we are dealing with auto-immune thyroid issues. Finding only one nodule would have slightly upped the cancer concerns.

I haven’t intentionally left you on this cliff hanger. My primary care doctor left her practice quite unexpectedly, before I could even see her to follow up on the test. I’ve been working hard to find a new provider for continuation of care. I see my new PCP about a week and a half into July, followed by a new endocrinologist in August.

Are you in Northern Nevada?

5:30. Please contact me to join our information and announcement group if you want local group attendance details.

If so, I would really like to meet you, in person, early tomorrow evening!

I’ll be facilitating the new Life Writer group in Midtown Reno. We so hope you can come!

Redeeming Heartache, Restoring Hope

Ongoing Heartache:

We’ve taken six trips to an out-of-state children’s hospital, in seven months. Our daughter has been under general anesthesia three times in the past five months. She has had two major surgeries, each followed by several days of inpatient recovery.

I’m in the midst of medical testing for something that probably is not a HUGE deal. Yet it “could be” as serious as cancer. I’ve gained 40 pounds in 10 months, all while trying to eat fairly carefully. As a result, nearly my entire closet is painfully uncomfortable or simply doesn’t fit at all.

I’ve been justifying many concerning symptoms to myself, all year. It currently seems likely that thyroid gland that is aging out of happiness (thanks doc, I feel old now). The more stroked side, but only that left side, at the base of my throat, has become a large lump.  We drew a bunch of blood work this week. (I should have received digital results yesterday, if normal, but did not. The office confirms that they have received the results. So now I wait for the doctor to call.) I will have an ultrasound of my thyroid and the lymph nodes in my neck, next week.

Life is Hard, but God is good!

I know this is only a season. It’s been a long season indeed. Chronic illness, infertility, business loss, failed adoptions, miscarriages, financial struggles, another’s incompetence leading to my injury and strokes, marriage difficulty, church family losses, grueling years or therapy and rehabilitation, family health disasters, job struggles, coming face-to-face with childhood pain, and the list goes on…

Yet, in the midst of the trials, there has been much blessing. The gifts of living children added to our family, amazing friends, God’s constant provision with never a day lacking food on our table or a roof over our heads, a published book, access to quality medical care when needed (not always when wanted, nor how desired, but always according to God’s riches), restored marriage, a wide assortment of wise Bible teachers who have spoken into our lives, and this list also continues much longer than a single blog post could ever allow.

We have never been aware of God’s presence more than we are right now!

Yes, there are trials, but compared to where our family was emotionally, even a year ago, we are healing and growing. God is carrying us through!

If you followed my old InfertilityMom blog, you may remember our flood damage saga. It took a little over 14 months, but we finally have a floor, wall, and mantel again!

Restoration

We still have a few details to finish up as we restore our damaged house, but I’m actually in no hurry to clean up the last few projects. Now that the BIG messes and losses are gone, the little things actually make me smile. They are a visible reminder that God’s still working on me, bringing hope, healing, and deliverance to my family. Seeing the huge hurdles get overcome, has left me confident that the loose ends will eventually be put to right too, in our physical home, and in our family!

 

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