Jesus is for the Wounded

Moments so dear

Published on June 28, 2014 by Jesus is for the WoundedLeave a comment

In the closeness of our embrace

I longed to stay there all night.

Alas I could not for the darkness shook within my soul:

An unknown sort that is staying longer than its welcome.

He went away to catch the rest sorely needed

After caring for me again late into the moonlight as every night for awhile.

Sometimes it’s just to say “hey,” sometimes to nourish my weakened frame:

Oh how his love has shown true in sickness and in health as promised.

How will I love thee as you have loved me my dear?

Could there ever be a way to fill your coffers with sweet blessings as you have mine?

I hope we have many years to find out together my humble knight

To explore the longings of nights ended much to soon —

In this I too shall rest, with hope and great expectation

Of a day languishing with you in a string of moments so dear.

For now it’s “goodnight my love.” Until that day comes I shall love thee in my heart more than my touch can say . . .

The life I once lived

Published on June 26, 2014June 26, 2014 by Jesus is for the Wounded2 Comments

I’ve taken on a few phrases from others and made them my own over the years, ones that put a bunch of thoughts into a phrase or short sentence. Not that these would bode well as my epitaph or anything like that mind you! They just seemed to stick with me. Here’s a biggie from an old supervisor named Jim. He was a social worker by training and the director of the inpatient geriatric psychiatric unit where I was contracted to work. When asked how things were going he would often reply:

“Same story, different day.”

Funny thing is that it was largely true. On the Generations Unit there generally was at least one person every day screaming non-stop, voiding in an inappropriate location, wandering into another patient’s room unannounced, refusing to eat, refusing to get out of bed, or making up a story to convince him and psychiatrist that he/she did not need to be there. Yes it was a crazy place. That’s what you get when the nursing homes send their residents whose behavior can no longer be managed in their facility. It is also where a depressed little old lady or your suicidal Uncle Pete would go for supportive therapies, meds., daily structured activities, and a round of ECT if needed (aka shock therapy!). The latter actually worked very well for older adults. The short term memory loss and massive headache was a major drag for awhile, however!

I worked there as an occupational therapist. My role was to evaluate the functional level of the patient and assist the team in forecasting discharge plans while providing therapeutic activities. The goal was always to achieve improved mental status, mood, and functioning for discharge to the least restrictive environment. That might translate to a person returning home instead of assisted living or remaining in a private room in a nursing home instead of a locked dementia unit. Sometimes the patient’s goals were reached and sometimes not. Educating the family on the patient’s needs post discharge was also my role: an important and sometimes delicate process. I loved all of it. I got to apply my skills in standardized assessments, grading activities for the best outcome in lower and higher level cognitive groups, patient and family education, and knowledge of community resources that may be of assistance post discharge. The two latter skills were collaborated with the unit social workers who also loved working with older adults. We had a great team back then . . .

I’ll never forget the two weeks that c-diff ran rampant through the unit. C-diff is short for Clostridium difficile: an infection of the colon causing horrific diarrhea and inflammation. It’s a bacterial infection I can now diagnose by smell. O.k. perhaps that’s too much information? When virtually all of the inpatients become sick it is only a matter of time before the staff contract the infection as well. There are just too many common areas in a locked unit that too many people end up touching with a contaminated hand after caring for a patient. The motto those days was, “please pass the yogurt” or something similar!

Ruth was the best during situations like that. She was older than me and had been a Certified Nursing Assistant for years. She could get the toughest old bird to take a shower when he was resisting for days then she would turn around and feed a tender soul in the late stages of Alzheimer’s disease bringing out the patient’s long-forgotten smile producing a long-lost twinkle in her eye. Ruth often told us stories of her pet pot-bellied pig. Seriously! The beast weighed a couple hundred pounds but was part of their family, inside the house, potty-trained and behaved like a favorite feline or pup. I could not imagine it! Ruth lived in a suburban neighborhood like the rest of us! Actually more recently while living in a smaller town with Amish homesteads not far away I can now start to imagine it a little better. It’s still not for me, however!

The life I once lived was in the suburbs of Chicago amongst 8 million other people. I was married and lived in a townhouse as it was the only affordable option even for two Master-degreed professionals or DINKS: double income no kids. We attended a mega church then a smaller Bible church, organized a yearly block party in the court of our neighborhood, and took walks together in regional parks called Forest Preserves. I enjoyed neighborhood walks and riding my hybrid bicycle (between that designed for road touring and trail riding). Holidays were spent with family in various cities as everyone was out of State for our Illinois locale. Sure there were ups and downs with health issues or financial stressors but largely each day of our lives was the “same story, different day.” When this got to be too much for my former spouse he found a way out and took it. Hmmmm. Alternately I found that you don’t really need a way out, per se. Sometimes the “difference” we are seeking finds us as part of the Lord’s plan for our lives and it comes from within us instead of in the form of persons, places, or things . . .

Flash forward a myriad of moves of my residence, a change in the car I was driving, changing my job four times, transitions to new hair and clothing styles, some weight loss, and eventually moving to Indiana to marry Steve — over 10 years later I rarely say that old phrase anymore. Oh even if nothing much has changed lately in my health or the circumstances of battling a serious illness, there are always new discoveries meeting me each day. Things simply cannot be boring when you marry a man with as much energy as Steve! He keeps me going just keeping up with all of his activities even when he is not home! First there’s his four adult children and their families, then there’s his hobbies and sports, and his participation in the worship of our Lord Jesus Christ; the latter always brings news related to our church fellowship in addition to an intriguing message from the pages of the Bible. That’s a lot to keep track of and I love it. My garden, online jewelry business, and this blog fill in much of the rest of the time not taken with health-related activities. How could I ask for more when my heart is full?

Sure my life has changed in the last decade or so and I’ll bet it’s the same for you too, Gentle Reader. Is that o.k. with us? As for me I would never have asked for the difficulties that have come in recent years that have added more “excitement” and stress than I could ever have imagined. The crazy thing is that I would also have never known how to ask for the blessings that have come from this particular path either. I would not want to be without the blessings just to have had an easier life. I believe that I am exactly within the will of my Heavenly Father, that He has His hand on my life and my heart warmed in the shelter of His mighty wings. He goes with me, goes before me this moment and the next; there are signs of His wonders sprinkled everywhere in my days. I am so glad that I am not bored with my life. Well yes of course there are times I’d like a little less “excitement!” Yet that’s when I need to rest my cares at His throne of grace, allow Him to carry me like the famous Footprints in the Sand poem so graphically portrays, or wait on the Lord in the quietness of a moment of prayer . . .

I’m going to keep my head up and do like my brother, Mike, always used to say: “keep moving forward.” The life I once lived is gone but not forgotten. Those memories bring gratitude for all that the Lord has placed in my life today: a story that is never really the same. In time my Lord will make all things beautiful. In the meantime though I think it is finally time for me to go to bed! There is a calmness in my spirit at last. The sun is coming up and the birds are singing their morning hello just outside my window. For me it will serve as a happy goodnight lullaby as I snuggle up to my intended beloved who brings me more joy than I could ever imagine. Real love and more is here now.

Yes, Lord, it will be a good day I think. :J

The 5 1/2 hour window of time

Published on June 23, 2014June 23, 2014 by Jesus is for the Wounded1 Comment

Ready to head home with the 24-foot outrigger and ama on the roof! — Ready to head home with the 24-foot outrigger and ama (float) on the roof!

So grateful to be out with my River Bear!

We came to a clearing in things and went for it!

These pictures were taken after a wonderful evening paddling our tandem outrigger canoe (OC-2) on Sylvan Lake here in Indiana. How wonderful to be out on the water for a second outing with Steve this year. I am so very grateful!

Sadly the evening ended worse than the earlier part of this day. Tic attacks had started in the car on the 45-minute ride home. Within an hour after getting home and unpacking the car I was feeling sickly. We ate some quick salads before I scampered off for bed, still in my paddling clothes. Low grade seizure attacks ramped up over the next hour, escalating into one of the worse episodes I have had in a long time. Screams of terror filled our home. The best that I could do was hold on and focus on continuing to breathe . . .

Eventually I was able to call Steve for help getting off the damp clothing and showering. In my stupor and neurological collapse (requiring complete assistance to transport myself to the bathroom) I figured out that I must have gotten exposed to the blue green algae we encountered in the narrower sections of the lake. I had taken numerous precautions to limit exposure to the water. However, some simply cannot be avoided when splashing about, paddling from an open cockpit of an OC-2. And perhaps the slimy green pond near the port-a-potties in the parking lot were releasing aerosols that were not to my liking as well? I didn’t touch any food or the mouth of my water bottle since we did not have hand sanitizer with us. I guess it wasn’t enough: I am too sensitive to any form of biotoxin to get anywhere near them in any form until things change.

Thankfully after about three hours I regained motor control of my body. I was better able to communicate and we processed what had occurred this evening. Steve agreed that we probably need to limit paddling together to waters treated for algae, such as the private lake of a friend’s home. This means not being able to join the local kayaking group outings on Tuesday night for the third year in a row! That’s a major bite in the shorts! To get strong enough to go out with them for two years was a major accomplishment for me and lasted until I got sick October 11, 2011. Just getting into a kayak (and now an outrigger canoe, solo and tandem) simply had never happened before I married Steve. We have so many great memories being a part of the group in addition to his kayaking competitions. (Goooooo Steeeeeeve!) Sigh. And I was really enjoying the switch from a kayak to an outrigger, sporting my carbon-fiber bent shaft paddle too. So awesome.

Last night I watched most of the video story again of Justin and Christa Vanderham. Christa suffered from chronic Lyme disease and mold exposure for years before finding proper treatment with antibiotics, supplements, and nutrition. A fellow sojourner in recovery and reader of this blog graciously reminded me recently that Christa’s illness looked a lot like the videos that I have posted here and on You Tube. Yes, both our symptoms of distress appear wretched: intractable pain for Christa and relentless seizure attacks for me. We both scream at times due to our agony. In chronic Lyme and biotoxin illness it’s not the exact matrix of symptoms that is so significant as it is making sure you have the right diagnoses and treatment protocols to get well. We don’t say that we have different illnesses because our symptoms are a little different. We do say that we both might benefit from similar aggressive treatment protocols if reasonable test data and clinical presentation indicate Lyme or biotoxin illness. Unfortunately for me, EVERY SINGLE TREATMENT INTERVENTION exacerbates daily seizure attack episodes that average 3-4 hours per day! I simply cannot survive the treatment protocols of which I am aware to date. The multiple chemical sensitivities (aka Chronic Inflammatory Response Syndrome) already leaves me largely homebound to try and prevent noxious symptoms. Lately they are on the rise again (up to 8 hours!) regardless of where I am or what I am doing. When I take a 5 1/2 hour window of time when the symptoms subside and test the waters, so to speak, I usually pay dreadfully for doing so. This gal just can’t get a real break I guess. I keep trying the wrong things. On the surface, you could say that I am out of options . . .

Regardless, this I know: my Jesus goes before me and knows the desires of my heart. He knows that my heart is breaking right now to realize that I can no longer be with my dear husband 2 to 3 days per week when he pursues his sport on the water. I learned to kayak to be with my River Bear and was delighted to discover that I enjoyed it too (at a slower pace of course!). My Lord knows how isolated I am when I am home alone because of this illness. He has provided the safety and security of a lovely dwelling with plenty of time with my Heavenly Husband. He was my best buddy before I met Steve; He saw me through life changes equally as traumatic all the way to the restoration process in due time. I’ll be hanging tough and trusting Him with this door closing on open water activities, no matter how I may feel about it. The fact is that my Lord and Savior loves me more than I can ever know. He wants what is best for me. I will wait with great expectation at His throne of grace for His plan for me, whether or not a new door or window opens in due time. If I don’t lay down my will for His will then I will denounce all that He has shown me of His love for me in the past. I don’t want to waste all that I have learned. During those trials is when my faith grew to be what it is today. That is when the Holy Spirit became real to me, guiding me and comforting me always. Nothing can take that away from me. Nothing will.

Gentle Reader, do you know faith in God like this through His son, Jesus Christ? Please share with me your experiences if you do. I know it will encourage me to hear from you in addition to other Readers. Oh and if you could say a prayer for my Stevers that would be great. He hasn’t been getting much sleep lately. Thanks a bunch.

Better finish that mulching project in the gardens soon. Love to you, Just Julie

Puffy white clouds and 5 sparrows

Published on June 22, 2014June 22, 2014 by Jesus is for the WoundedLeave a comment

⁶Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. ⁷Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows. Luke 12

At first it looked like a gentle breeze flowing through the branches of the variegated dogwood bush outside our bedroom window. Puffy clouds drifted past the backdrop of the truest “sky blue” you could desire on an early summer afternoon. Such a simple scene, peaceful too. Then again the rustling appeared to come from below my view. Was there, wait, yes maybe there’s a little critter in there moving the branches about? And lo there she was: a lone house sparrow spritely jumping about within the leaf cover in and out of my view just a few feet away. Better not move a muscle or I might disturb the work of my feathered friend. Does she know that I could almost reach out and touch her marbled wings if the screen window didn’t separate us, didn’t provide secluded freedom for your Saturday play . . .

The little one flew away as my gaze returned to the light blue walls next to the bed inside the window. Maybe if I waited just a little longer another visitor would appear? To my delight the green-with-white birdhouse was rustling again from the top, the bottom, and even just beyond my view! Let’s see: there’s one, two, three . . . a fourth appeared and darted deeper into the cover of leaves as a fifth little birdie perched right in front of me too. Silly little one. He began preening his ecru-colored chest feathers without a care in the world as the branch bobbled up, down, and all around. He reminded me of my brother’s childhood parakeet, Perky. How they flex their necks so steeply to reach the soft feathers that form a collar of fluff I’ll never know. Such a curious, skittish, carefree creation indeed. Then in a matter of a few seconds, they all flew away . . .

I was alone again. Maybe I could try to move my head and adjust the comforter covering my chilled shoulders? Yes, that’s good. But to move my legs and arms was not to be just yet as my attempt to do so triggered another mini seizure attack episode. Sigh. I thought I would be recovering by now. Not so. Oh well, when my husband comes back I’ll ask him to bring me the lunch I had made myself earlier and put into the frig in case we were to go out on our tandem outrigger canoe this afternoon. What a nice treat I thought it would be to have something made ahead of time that fit my special diet and tasted yummy too. Not quite. Gratefully it wasn’t too long before he returned to check on me, brought me the container of rice paper finger sandwiches and fed me several bites, one by one. Then he put the bicycle water bottle to my mouth so I could sip some water and wash down the food sticking to my throat as I lain sideways on the bed. A few bites, a long sip, a few bites, a long sip. He has this routine down pretty well by now. Thankfully these complete neurological collapse episodes only happen every 10 days lately. They used to be every couple days . . .

In time my strength returned and I was able to put a pillow under my own head and feed myself. Unfortunately something triggered a major seizure jolt when my beloved returned, setting me back again for awhile. He was sitting close to me and I suddenly needed some fresh air from outside the window. Stevers obliged then left me alone again to recover per our routine for these sort of things. Again I revived. Eventually I was able to weakly get out of bed and start to put on some clothes. That’s a nice thing to do after a shower at 2 in the afternoon. I was feeling a little funny lying there naked rolled up in the comforter. Oh well. It’s the best I could do after beginning to collapse in the shower an hour earlier, struggling to dry myself off, and Steve helping me lie down as it appeared I would be falling over any moment. Flash forward almost two hours as the episode was resolving I was grateful to be able to move my left arm again. Looks like I would be o.k. albeit shaken for several more hours anyways . . .

Sitting outside in the sunshine helped me regain my strength. Of course I had another one of my low oxalate snack concoctions (white chocolate!) and a refill of cool water in my trusty Summit City Bicycles and Fitness water bottle. Little did the guys at the shop know how helpful that bottle had become when I needed a special flow-control mouthpiece to refresh me when in bed, not on the Fort Wayne River Greenway! Maybe someday soon I’ll get back on my bike. I am grateful to have had a test run of two miles earlier this Spring; I should be able to repeat a short ride on a better Saturday afternoon really soon, Lord willing. How hard could it be to peddle a few miles? Well anyways sitting outside on our patio later this afternoon with pretty gardens all around me and the sun still shining brightly overhead did me a world of good. The puffy white clouds still filled the sky and I could hear sparrows, robins, and more in the distance. I got up to pluck a few weeds, pick a few radishes, tinker here and there before returning into the house. Perhaps my beloved would understand that this day would be better spent at home than paddling on a lake somewhere? Change of plans. Enduring these kinds of afternoons together makes it obvious what we should do, more than words can ever say . . .

The rest of the day was decent as I prepared a nice dinner and some food for tomorrow in case we are able to reschedule our outing on the water together. I do try to be hopeful, eh? As most Gentle Readers would recognize in this blog we tend to live our lives over here a bit spontaneously: making plans more at the last minute, in the afternoon or evening, and after checking the weather report/Julie’s snack supply/whatever we can reschedule to be able to get away . . .

This evening? Not so nice. We are just not sure what is going on with these wretched evening episodes again. After a full year of 1-3 hour episodes virtually every night after dark and up to 30 minutes most mornings, you would think one of these specialists I’ve seen would have figured it out! Yes, my melatonin level is off the chart and melatonin levels change at night. I am getting out in the sunshine just about every day, exercising at night, avoiding foods with tryptophan (that tends to elevate melatonin) and more per my internet research on the subject yet the excess must be persisting. (Labs to follow!) Then my new biotoxin doctor laid a good one on me yesterday, saying that if anyone could figure out what to do IT WOULD BE ME SINCE I KNOW MY SITUATION THE BEST. Whaaaat? Why do you think I pursued your clinic out of State? I was hoping YOU could figure it out! Even my brilliant functional medicine doctor in addition to your brilliant functional medicine colleague have largely set me adrift. Now you are saying since I cannot tolerate Dr. Shoemaker’s biotoxin protocol that you cannot help me either? If you think I was able to figure this out would I be calling you? Geez oh man. Lord, come what may . . .

Back to the story of the bird in the hand is worth two in the bush OR wait a minute: there aren’t any birds here right now since it’s after 4 in the morning! Yes, I’m back to my late night schedule again. Let’s see . . . perhaps Luke 12 can remind me that just as the Lord provided me a sweet distraction of His delightful creation in my time of distress, He cares for me and for Steve in our times of distress too. He has provided for our needs despite the incredible expenses, sustained us during multiple special events when extraordinary measures were needed to keep me as safe as possible, and granted me the time and space to get well when I cannot work. I am grateful for my incredibly loving husband, a pretty home and gardens to enjoy when I cannot go out, and sparing of my abilities to think take care of my basic needs. Sometimes I need to wait for the Lord’s timing on some of these things which is o.k. too. I have learned to appreciate blessings in smaller packages with gratitude as they present themselves each day . . .

So I choose to take to heart His statement, His promise to care for all of the details of my life. He knows all about what is happening over here and desires for me to be courageous, not afraid. He has laid it on my heart that He has a plan and a future for my life (Jeremiah 29:11) and that nothing will separate me from Him or His will (Romans 8:38). I get this. Perhaps it’s why I don’t spend as much time crying anymore when the wretchedness comes. Instead I’ll say,

³Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, ⁴and endurance produces character, and character produces hope, ⁵and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5 (ESV)

With the lightness of heart shown to me by my Creator God this afternoon in my time of need, I’ll take the last word of the paragraphs granted by His grace and noted above:

This new day will come anyways, and no matter what may come or others may say, I will find a way to play with lightness of heart in celebration of the One who goes before me and will never go away!

Thank you Jesus for your Word, for your gift of words. Thank you for helping me get through that to which you have called me and should any good shine through may it be for your glory Lord. If it is your will I ask for your healing mercies and a time of blessing. I lift up my husband (Steve), and my brother (Mike) too for your anointing and blessing. If there is anything hindering our walk with You, please guide us, restore us through your Holy Spirit so that we may delight in sweet fellowship with you all of our days.

In Jesus’ name I pray. Amen.