Someday
Tag: sick building syndrome
There’s dirt under my fingernails!
No matter what happens from here, I must rejoice: there’s dirt under my fingernails!
Yes, in the middle of this wretched illness, with many projects on hold, the sun shone and there was a break in the noxious symptoms plaguing my life. So what did I do? I got outside and played in the dirt, that’s what!
Harvested the overgrown swiss chard.
Planted the tomato salsa coneflower I bought from a local nursery last week.
Watered!
Cut back a few perennials that the dead flowerheads were spreading their seeds where I did not want them to go.
Cleaned up the dead stalks of the daylilies in the front beds.
Harvested a few radishes and 3 monster carrots.
Tidied up a bit here and there.
Started the conversion of a raised bed into a massive mulch pile for the winter.
Finally trimmed a dead branch from one of the three variegated dogwood bushes.
Cleaned up the grass overgrowth from one of the two trees leftover from my Spring clean-up. Mulched.
Played with my garden dog, very happy to be out and about with me in the yard. Oh pups. You da best.
Now why would I detail every aspect of these precious 2 1/2 hours? Because I would rather work in my garden than do just about anything. It grieved me terribly to waste a beautiful afternoon on Tuesday when I was a few minutes from going outside and my symptoms tanked instead. The ordeal ended Wednesday morning. And so my frustration has continued for two years, with what has become the “endurance race” of recovery from Lyme disease and mold illness. The best coping strategy is to make no plans, hope for a little something, and rejoice when at least I get some decent sleep no matter what time of day it comes.
Then when you can go out and get some dirt under your fingernails, TELL THE WORLD!!! Oh and water soaked my right gym shoe too. And my knee pads (essential over age 50 you know) are encrusted with mud. Ain’t it great?
Hang in there, Gentle Readers. Sometimes something good happens when you least expect it. :J
Sometimes the night just passes unnoticed
Psalm 121
I will lift up my eyes to the hills— From whence comes my help? 2 My help comes from the Lord, Who made heaven and earth.
3 He will not allow your foot to be moved; He who keeps you will not slumber. 4 Behold, He who keeps Israel Shall neither slumber nor sleep.
5 The Lord is your keeper; The Lord is your shade at your right hand. 6 The sun shall not strike you by day, Nor the moon by night.
7 The Lord shall preserve you from all evil; He shall preserve your soul. 8 The Lord shall preserve your going out and your coming in From this time forth, and even forevermore.
I’ve heard this called the bedtime psalm. Sure beats the one I grew up with:
Now I lay me down to sleep
I pray the Lord my soul to keep.
If I die before I wake,
I pray the Lord my soul to take.
The childhood prayer above offers me no comfort during a night like last night. If the worst outcome of 15 or so total hours of noxious symptoms last evening and overnight were to repeat itself, I would need the truth of God’s word on my mind and in my heart. Some wishful rhyme uttered as a “prayer” has only the fleeting power of a feel-good sentiment. It wouldn’t refresh my husband enough either to feed me or carry me to the bathroom again. Only God’s word has the power to transform our fragile lives, and I know He will transform mine someday. I know he sustains my beloved with supernatural strength. Only God’s word provides sustaining grace for all who suffer, for when sleep will not come.
This afternoon I must somehow get to 2 medical appointments despite the lethargy, pain, sweats, stiffness, low grade neck headache, ringing in my ears, and so on.
Oh Lord, I do hope these trials end soon! Maybe I can nap later this afternoon? Yawn.
Yes, no, and wait
They say that the Lord answers prayers with three responses: yes, no, and wait. I believe I have experienced all of these in a big way this past week!
Yes. The answer was “yes” to the question of whether or not I would like to be admitted to the Indiana University (IU) Methodist Hospital Neurology Unit. After an intense appointment with a neurologist in the IU Neuroscience Center, Dr. R. offered an overnight “observation” stay for a video EEG. The hope was to capture the tic and seizure attack episodes to clarify my diagnosis and treatment. So with the clothes on my back (since we were 2 1/2 hours from home), my husband and I followed the epileptologist’s advice and proceeded with the admission procedures. I’d had 2 hours of sleep the evening before and a major episode in the office of the neurologist that morning. Surely I was primed for plenty of episodes as the day progressed!
And that is exactly what followed: at least a dozen more full blown or brief episodes captured on video with dozens of electrodes glued to my head and a heart monitor attached to my chest. The rest of my Tuesday was wretched. One good part was finding some food to eat on the hospital menu fit my Candida diet, yes! The staff was nice. Many unfortunate frustrations occurred as well; you’ve heard enough of those on this blog so I won’t elaborate. The biggest frustration was seeing the inpatient neurologist twice for about 60 seconds each time he visited my room. He never looked at my MRI films or my medical records! His job was to do the EEG study and nothing else so that’s all he did. Perhaps that is all I could take anyways? Who knows.
No. I do not have epilepsy. O.k., my Lyme/mold literate doctor kinda knew that already. The hospital neurologist said I needed to follow up with the Neuroscience Center neurologist for treatment or any next steps in my care. The answer was also “no” to having one of my 3x/week IV magnesium infusions while the IV was still in my arm. I usually have a tic or seizure-like episode when it is inserted or removed so I was grieved when they could not help me with this; I would need to make up the appointment at Dupont Hospital in Fort Wayne, back home. The nurse pulled the IV; another episode followed, off camera.
There were plenty of other “no” replies over the 24 hour stay in the hospital. Perhaps you know what it is like? I was ordered to be on bed rest and fall precautions, tethered with multiple probes, monitors, and a bed alarm. Geez. At least they let me use the bathroom after initially forcing me to take a bowel movement on a commode in the room within view of the video cameras. Geez again. Eventually I was too exhausted to care if the back of my hospital gown flung open. Finally, after 2:00 a.m., I got 7 straight hours of sleep. A miracle for an inpatient setting, no less. Thank you Lord!
Wait. These past 2 days since returning home have required patience with myself as I recovered from the whole ordeal. My dear husband drove a total of 5 hours two days in a row plus participated in the neurology appointment on Tuesday and completed a partial day of work on Wednesday. Steve is a saint, I tell you! So we both have waited for our bodies to recover from exhaustion. I will need to wait to speak to the neurologist at the Neuroscience Center as well. Her nurse was not able to return my phone call Thursday or Friday. Steve and I are waiting and wondering what’s my treatment plan? Do I have one?
My heart is breaking with another project that must wait at the moment: publishing my eBook: Hope Beyond Lyme: The First Year. I need to transpose the final edits into the document formatted for publication. I’m about 3 hours from pressing the “go” button! This must wait until I can concentrate better. I just feel too traumatized and drained by the hospitalization experience. Perhaps it’s all I can take now anyways? Who knows.
I do know one thing: writing is one of the best therapeutic agents for me to come back to my senses! I am sooooooo grateful for you, Gentle Reader! You keep me sane! I am grateful to report that I had a 27-hour reprieve from noxious events yesterday and two less events overall thereafter. Being away from home and in the hospital (with a limited pharmacy for supplements and compounded medications) forced me to go off most of my prescribed treatments. This may have been a blessing in disguise! I’ve started an elimination schedule, gradually adding back one item at a time and recording my symptoms. Turns out that one of my supplements is made from mold! Chucked that one last night after a bad episode. Not sure what caused the one tonight. Oh well. It was around 10:30 p.m. I always have a severe episode then anyways. Got any ideas?
Yes. No. Wait. Perhaps this week is no different than any other with these three answers to prayer, to the desires of my heart. I am so glad that I can trust the Lord with any answer that comes from Him.
1 John 5 14 This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. 15 And if we know that he hears us—whatever we ask—we know that we have what we asked of him.
And when the answer does come, the one we have hoped for with longing and expectation, it can be as joyful as a wedding celebration:
John 3:29 29 The bride belongs to the bridegroom. The friend who attends the bridegroom waits and listens for him, and is full of joy when he hears the bridegroom’s voice. That joy is mine, and it is now complete.
I am somewhere between the themes of these two verses, knowing that He cares for my needs and has a Divine plan that includes all of the events of this past week. In the meantime I must keep my eyes focused on Him lest they wander to places that will get in the way of healing. I will rest in the promise that has meant so much to me these past 10 years. His love prevails and will carry me through all that is to come. Perhaps it will encourage you too?
Romans 8 38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
When in doubt, take a nap!
I must apologize for the wacky edits on this posting! I’m on a borrowed computer, borrowed time.
The Bible tells us that man makes His plans and it is the Lord who orders our steps. Proverbs 16:9. Indeed. I was hoping to do so much yesterday in my home to help my husband and myself. Today marks 2 weeks of displacement from our home, first from a vacation then second due to complications of Lyme Disease. Yesterday I had hoped to return home for a few hours wearing my trusty pink respirator mask and pack up the Christmas decorations with the help of a dear friend. Er, no. Instead my husband and I suddenly moved me out of the hotel and into the home of a sweet family and their baby. I had to leave the hotel because the furnace wasn’t working and the maintenance guy triggered the spewing of burning electrical wires into my room trying to fix it. We temporarily moved to another room in the middle of the night and 5 degree weather just to sleep. Just seizure attacks this time, in both rooms, no neurological collapsing and a temporary headache. I guess that’s good? Still, time to move on again!
This family where I am is as sweet as it gets. I am safely tucked away in the gun room with the worldly possessions of a nomad all around me. We could make this work. Only problem is that I woke up with a dozen seizure attacks this morning. What could it possibly be now? I had unplugged the electrical cords wrapping around the bed and it bought me another hour of sleep. This is a newer home with no known history of water or mold damage. Is it the smell of gun oil? Or the new insulating drapes on the window? Lord, have mercy. I gotta live somewhere! Time for a nap then a Dr. appointment later this afternoon. Maybe the Lyme Literate Medical Doctor (LLMD) can help me figure it out. My husband and I are at ourwits end. I have tasted relief for 36 hours a couple of times in a few of the ELEVEN BEDROOMS in which I have slept this past month until something noxious happened. All I want is somerest. Is that too much to ask? Well maybe I really want to be well. Maybe I want it all. Yeah, that’s it. Must be time for a nap . . . on the couch!
Stay tuned. By now this blog is reading like an action-packed work of fiction with just enough plot reversals to keep us all guessing — and you are my editors, gentle readers. Let me know if you have any ideas, eh? Seeya later! :J
Jesus is for the Wounded 
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