And a little something special from my past:
Tag: seizures
A Christmas Gift
A Christmas Gift
Isaiah 9:2 New International Version (NIV)
2 The people walking in darkness
have seen a great light;
on those living in the land of deep darkness
a light has dawned.
Some of you know that I was in the hospital earlier this week with the searing pain of shingles on my face. I was crushed to face such a serious disease on top of the daily seizure episodes that accompany chronic Lyme disease: a battle that consumes me with treatment and related activities for most of every day. How could I possibly bear one more grief?
The answer: with Jesus Christ. Inside the treatment plan of this new illness came a drug for nerve pain that also happens to help seizures. And fibromyalgia pain. I was humbled to have a couple of seizure-free days thereafter! Managing everything took strained breaths as I tried to get beyond the few 1-2 hours of sleep in those first days and other complications. There were setbacks that crushed my spirit: aggressive, violent episodes of a kind I had never seen before. Then they all nearly stopped. And very few “little zippies” have followed as sleep has returned too. I am humbled, hopeful, grateful. What a Christmas gift!
We have no idea what lies before me in this long journey of illness and hope for complete recovery. I am grateful for those who have followed my story, prayed, and offered encouragement just when I needed it. Thank you! I believe this story goes beyond me, however, as neither of us knows what lies ahead. But don’t waste your time worrying about that. Put your faith in the one who came to save us from this hell, these trials, the sorrows that plague our lives here on earth big or small that began as a consequence of the Fall of Mankind. He grieves for our loss, our struggle, our suffering. And He gives us a choice what to do with it.
Choose to join me in the celebration of a new life that comes from the belief and surrender to the Lord: Jesus Christ. One day He will return to make all things right. No more sorrow, no more tears. Until then we can have a good bit o’ the joy, the strength, the love that supernaturally exceeds this life: our eternal destiny begins the day we place our faith in Him. Do you now Him this way? He is the only way to peace. He is the only way to joy. He is the only way to love. He invented them after all.
Merry Christmas Gentle Reader. Hope to connect with you more in 2017 and most importantly at the celebration that awaits believers in Jesus Christ in heaven.
I love Christmas.
With love, Just Julie
O.B. Panties and an HGTV Hangover
Are you going to love it or list it? Are you ready to see your fixer upper? I just don’t think this kitchen is big enough for me! This will all have to be torn out and redone!
And so goes the thoughts in my head the day after being discharged from the hospital. Since cable TV was my only steady friend and we don’t have cable TV at home, we got really well acquainted in the past 3 days. I am convinced now that the wood floors in our home are stunning and that we can stay put for awhile longer. Wood floors are on-trend these days dontcha know?
I also learned that O.B. elastic panties secure blankets over hospital bedrails really well! When you are on “Fall Precautions” and have a history of seizures, they pad the bedrails with them. The only problem is that I am sure that wrapping blankets over metal bed rails hardly meets JCAHO requirements for prevention of injury! They outta have provided bed pads. Oh well. Welcome to the modern hospital complete with a 20+ year old hammock sling for a mattress. Otherwise, the food filled my belly and care was alright.
I was in the hospital after an urgent trip to the Rapid Care Clinic associated with my doctor’s office sent me there on Sunday. The Internal Medicine Doc said I could get an evaluation from an Infectious Disease Specialist there (which I was later promised in the ER as well). That never happened. What did happen was getting pumped with a plethora of drugs that created nausea for the first day and one-half, exhaustion from side effects and lack of sleep, weight gain from 4,000 cc of fluid and food-snacks-with-every-drug-to-protect-my-tummy, and a lesson in humility.
Regarding the latter, I learned that Nurse Practitioners and Physician’s Assistants run the modern hospital in America these days. Or at least they do for what happens bedside. I saw both types of professionals; they got to talk to the Infectious Disease Doc but I did not. Turns out that my acute case of shingles had been seen before so they treated me “by the book.” Never mind my history of daily seizures and concern for the brain-swelling complications that can come with the worst cases of shingles: a disaster potential which could change my life even further, forever. Thank you Lord that I had called the Ophthalmologist on-call the night before and gotten the treatment needed to protect my eyes from the herpes zoster virus. It is through the blurry vision of an eye ointment that I chat with you today! The hospitalists never mentioned protecting my eyes from the spread of this nasty, searingly painful viral infection . . .
So I did my time, got my drugs, stabilized a good part of the intractable pain, and got sent home with: red lesions and swelling on the right side of my face, a 4th day of constipation, lots of prescriptions for drugs and OTC meds, and a renewed sense of what it means to NOT be in charge of your own life, your own healthcare. I did get to ask questions and for that I am grateful. I did receive my Lyme infusions of antibiotics before I left to continue that part of my treatment and for that I am grateful. I tolerated a peripheral line for 3 days without skin irritation and for that I was amazingly grateful. I did catch up on HGTV enough to last me a good long while and for that I am grateful. And I was reasonably able to tolerate a modified, hybrid version of my diet from the hospital menu and for that I am grateful. I was alone for those 3 days and 2 nights yet my Heavenly Husband was always present and for that I am grateful.
There are two other tidbits to note: I met a lady while walking the halls who was in the hospital for pneumonia. She’s a smoker and familiar with Jesus Christ whose birth we celebrate at Christmas. I shared with her a short testimony of how the Lord appeared to be orchestrating the meds I was given during that hospital stay to possibly treat the serious seizures I have been suffering for 5 years. Please join me in praying that the person of Jesus Christ would become real for her as well: as her personal Savior this Christmas.
My second point was hidden in the first noted above. Did ya catch it? Yes, I have not had a seizure since coming home from the hospital and had WAAAY FEWER since taking Neurontin in the hospital. Neurontin is not typically given for Non-epileptic seizure episodes but hey, it is commonly indicated for shingles. Win-win? I am hopeful. What if these 5 years of suffering daily episodes are about to end? It is too soon to tell how this will proceed going forward yet I am grateful for my little Christmas week reprieve for sure!
Merry Christmas to you, Gentle Reader. Be sure to check out the Christmas Letter from Steve and me posted today as well. Even in the dark times there is hope since the Light of the World has come as the person of Jesus Christ. Oh I do hope that you will share with me in knowing this joy today!
And keep an eye on your panties, eh? JJ
Not just another day
In this moment I feel quite normal. I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off. You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .
How come the wretched hellish experiences of mine have become a normal occurrence around here? Here’s what I mean:
- Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
- Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that wax and wane in effectiveness until they are simply useless or make me worse.
- Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it brings sadness every time and sometimes even triggers memories of every and any bad situation I have ever endured.
- My beloved’s rising to the cause of caregiving, from chores to feeding or assisting me to the toilet, eventually helps me recover just before he must either leave the house for work or retire for bed with his own case of exhaustion.
- Expenses beyond belief take away tremendous resources intended for the future: a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
- Hope can appear on the horizon as I make temporary progress or we discover new medical explanations for my suffering only to have that hope dashed, crushed, and covered with new diagnoses, new complications.
Today was not just another day. I cannot tell you the grief that I experience after losing one more to continuous convulsive episodes. This past weekend I missed the lovely snow softly falling outside our bedroom window: our first major snowfall in the Midwest. I didn’t get to delight in watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow! If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks. Those episodes with respective recovery periods totaled about 15 hours today alone. Lord have mercy!
This is no where near normal. Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy. I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic. One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday. Somehow I did get some Christmas cards ready-to-go however! Wow. That is simply amazing.
Please forgive me that my tone is angry tonight. I do not have words of encouragement, scripture to bring hope or any insight as to what the heck is going on with me. There are new problems with which to contend. Tonight I am in survival mode. It’s 3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning: an expensive treatment of merit I seriously question. Chronic Lyme disease? Heavy metal toxicity? Which one is it already?! Maybe before I go to bed I will try to finish cleaning a bathroom that I started 2 hours ago? Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . . At least my back is feeling some better though. Hooray!
So here’s to Christmas cards getting together and less back pain. I have a roof over my head and food in the frig to munch on shortly. My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I will join him in an hour or so. Well there ya go. Some sweet signs of normalcy do exist after all amidst some sweet blessings too.
I just can’t stay upset very long with you listening Gentle Reader. Thank you. Here’s a cartoon for you. You rock! JJ
The way it should be
We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”
I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way. The cleaning got done at 3 o’clock Monday morning!
The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.
One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.
Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.
Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.
My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off. He never does that. I benefitted tremendously.
The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them. My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.
The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home. My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.
Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.
I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it. Someone named “John” supposedly signed for it but it was never found. They reimbursed me for both the check and the “stop payment” fee.
I could go on . . .
If there is anything that I have learned over these 5 years of illness is that things are never as they should be. Well actually I knew that long before 2011 from my work with PEOPLE in healthcare. Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes. In the end it’s not about the individuals really. It’s about where I am placing my trust.
A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.” Yes indeed. Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ. We are to love everyone else as unto the Lord. Only He will never forsake us, never fail us, and deliver right on time every time.
Alrighty then. This rant is now over. It is just before sunrise and my nurse will be here in a few hours to administer my care. I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts. Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways. I will trust that the Lord’s will will be served once again. So before I stop making any sense at all, I will end here.
It’s probably the way it should be? JJ
Jesus is for the Wounded 
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