Not concentrating very well today which translates to not getting a whole heck of a lot done. These are the days they say in the 12-Step programs that a person is a “human being” not a human doing. Yes, this person just be sick today . . .
Thanks for understanding. :J
Proverbs 3:5-6
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.
Leaning on Proverbs 3:5-6 today as I face the reality that is mine. Then again, only the Lord knows the path, the bunny trails, the destination and the ice cream stops along the way. Ice cream. Hummmm. I sure hope there’s ice cream in my future!
Proverbs 3:5-6
5 Trust in the Lord with all your heart and lean not on your own understanding; 6 in all your ways submit to him, and he will make your paths straight. (NIV)
When someone says to me, “you look good today,” I’ve decided to simply take that as a compliment. The cynical alternative would be to question the intent of the person and wonder if he or she is thinking one of the phrases in the poster above. Is he or she wondering if I am really sick if I am able fix my hair and wear make-up one day in the past week? No one sees me when I don’t feel well because I don’t leave the house! Oh well. As a friend of mine named Carol used to say, “it’s better to just leave it alone.”
When someone asks me if I’m back to work yet, I’ve decided to say that, “getting well is my full time job these days.” If the person probes further, I’ve decided to disclose that I spend 16 to 18 hours every day in health-related activities and appointments. That usually brings silence so I quickly change the subject to his or her job or other primary role in life. My husband advises me that people like to talk about themselves and usually have a great time with you if you ask a lot of questions about them. I do enjoy getting to know others so his approach works well.
When someone asks me how I am feeling, I’ve learned that a quirky response such as, “below average,” “stable,” “not as well as I’d like to,” or “I’m having a better moment” works well. I rarely feel well (or if I feel better at the moment it is likely to change within the hour!) so it’s tough to give the truth: a negative litany of symptoms that has gone on for 1 1/2 years! This crap-ola-ski is likely to continue for awhile so I’m going to pace my answers. (I told you I’m Polish right?!) I appreciate the question, acknowledge it and turn my attention to the other person. It’s pretty clear when a person cares for more information and sweet when this happens.
When I do get to share a little more of my story, I try to end it with gratitude. There is always something for which I can be grateful, for which we all can be grateful. Today was a day that stunk until about 1:35 p.m. The noxious symptoms persisted without a logical reason even after a post-treatment nap plus an additional rest period. In the afternoon I moved slowly into extensive amounts of cooking my special diet and cleaning up this or that. The sweats episodes did not diminish until later in the evening. I am however grateful for two cool things that happened today: 1) crafting an amazing baked lamb cabbage roll casserole (gluten/sugar/dairy/chemical free as well!) and 2) completing the netting and support structure for the blackberry raised bed to keep out the birdie scavengers. Cool beans. Steve and I had a sweet evening together later after finishing our respective projects today. Thank you Jesus! Lord willing, I will worship His holy name tomorrow at church . . .
Recovery from a long-term illness thang isn’t for wimps you know! Most people give up, settle for less, walk away from their faith in anything or anyone, become bitter and isolated, or worse. I choose to trust that this journey will not be wasted, that the Lord will use it for His glory if I keep Him out front, and I exercise some care in my speech and behavior. Rejoice if you see me out working in my garden! I’m probably sweating bullets, nauseated, dehydrated, and weak but getting out into the world anyways. We all know what it is like to have to carry on with life when we simply don’t feel well, don’t feel like carrying on with life. I just get it more often! Eeek.
Ahhhh. That’s better. Happy Spring y’all.
Staying on track during the recovery from a chronic illness requires faith in the Lord for sure. From there are the little strategies that keep me sane like writing in a treatment journal. With so much going on from ever-changing meds., supplements, Rife programs, OTC remedies, nutritional strategies and the symptoms that follow, I would be lost without my handy Crayola Poster Markers! This also helps during appointments with my LLMD when he asks about the course of illness and treatment responses (or lack thereof).
Here’s my simple color key that helps me on track:
Then there’s the traditional yellow highlighter = Beam Ray Rife Treatments and Duration
So there you have it. I’m on my second box of markers and the green one is running out of ink again. I thought it would be the orange marker pooping out first but it’s got the staying power I did not expect! So glad the bright pink and purple ones haven’t seen any activity for the last month. Those colors are best portrayed in my garden right now, thankfully! I got to retire the brown one a couple of months ago too. I’m sad that the blue one gets used most days and especially since physical therapy ended 2 weeks ago. I had improved and needed to use the blue and green markers less when P.T. was weekly but the insurance company doesn’t want to play nice with my Crayola buddies. Geez!
Jesus is for the Wounded 
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