leaning on the Lord – Page 2 – Jesus is for the Wounded

Left behind. Not forgotten.

Published on June 7, 2014June 7, 2014 by Jesus is for the WoundedLeave a comment

One of the great things about Facebook is that it is timeless. Your event lives on after it is posted and no one knows what happened before or afterward just that you were there online at one moment in time.

The wedding of my husband’s son, Daniel, is a great example. I am delighted to have worn a gorgeous dress to the outdoor ceremony at the Lakeside Rosegarden downtown near where we live in Indiana. The weather was idyllic: sunny and 80 degrees with a slight breeze in the abundant shade. The nuptials were exchanged in front of the fountain and reflecting pools: the groom dressed impressively in his Marine blues and the bride aptly adorned in white chiffon and satin. The red roses in her hair were a lovely touch in the regal garden setting. A small contingent was invited to witness the event early in the afternoon and an even larger one would attend the reception 5 hours later. In the interim we snapped a myriad of photos then headed off to various restaurants in the area. A few crashed at their hotel rooms in anticipation of the reception at a restored train station called Baker’s Street. Surely there would be dancing, eating of gourmet finger sandwiches and cake: festivities that are the hallmark of American wedding traditions.

You wouldn’t know that the reception is happening right now and I am not there. I am sitting here in a Polartec sweater, pajama bottoms and my evening dress shoes (as the daytime slides have already made their showing in the soft grass around the park nearly landing me into a wardrobe malfunction!). This was my comfort garb I selected for a short rest before I redressed for the evening. Yeah well you can probably guessed what happened instead: the tic attacks that had begun at the quiet restaurant I selected and enjoyed with select family members escalated into a continuous episode as soon as I lain on the bed at home. Nope. No nap just some more shakes. Crap. Crap. Crap.

Just because we have hosted 2 gatherings (doubling the wretched symptoms over these past 4 days), got Skyped into a bridal shower (to minimize exposures to 2 dozen ladies wearing fragrances of all sorts), and attended one of the most lovely outdoor rehearsal-style receptions followed by an equally lovely wedding the next day, why would I be too weak to go to a reception? “Why” indeed. All of this celebrating was way too much for me a few days ago! Such is the nature of Chronic Inflammatory Response Syndrome (CIRS): a complication of Lyme disease and biotoxin illness. The fact that I made it this far is a miracle for me. I am grateful. And I am also sad that I could not finish the festivities with everyone, dancing the night away in the arms of my beloved. So my beloved and I did something else instead.

Just before Steve left to join his family for the wedding reception back downtown, I asked him for 5 minutes.

That’s when I put on my other pair of dress shoes so we could dance. Oh how I love my Stevers. (We played this song at our own wedding DURING the ceremony, before the Lord and all of our guests 6 1/2 years ago.) Afterwards with a kiss more passionate than many of late, we parted this evening. Later I looked at the photos we had downloaded from the wedding and posted a bunch on Facebook. Clearly there are more memories being created at the reception as I typed. Oh well. I had the most romantic dance of the evening right here in our living room. My beloved will return and all will be right with the world. Have I said that I love Steve so very much? My heart broke and the tears came easily as he prepared to leave. Rest assured I needed to be left behind in the comfort of our home tonight to rest for the eighth large gathering of the week that is tomorrow night: the wedding of a son of some dear friends of ours. This evening Steve will have danced with his lovely daughters and mother (here from California). Tonight it will be his turn to sit alone while his ex-wife dances with her new husband. So much not the way it should be. I’m sure Steve will be fine.

Perhaps another one of those great kisses will be coming my way a little later? Hope so. We each do what the Lord calls us to do on a night like this. At least the pictures are really nice, eh? Thank you Lord. How could I ask for more?

The Nurse Who Wore Perfume

Published on May 6, 2014May 6, 2014 by Jesus is for the WoundedLeave a comment

Nurse Ratchet from One Flew Over the Cuckoo's Nest — Nurse Ratchet from One Flew Over the Cuckoo’s Nest

After about 4 hours breathing fresh oxygen being pumped with fluids, I revived after a most bizarre episode. The Benedryl made things worse yet brought about 12 hours of slumber on and off into the next day. Whew! What an ordeal it was . . .

Such is life when battling biotoxin illness, multiple chemical sensitivity, mycotoxicosis, Chronic Inflammatory Response Syndrome, or what-is-formerly-known-for-me-as Chronic Lyme Disease. On Saturday I was counting the dollars and quarters from the neighborhood girls who bought friendship bracelets at our garage sale. I noticed a familiar perfume scent on the money that reminded me of a houseguest not long ago. Perhaps it was Flora by Gucci again? Anyways, no sooner had I zip-locked everything into a sandwich baggie when I started to feel sickly. Bizarre and violent seizures followed, ramping up and ramping down over the next hour. Holy crap!

I knew I had overdone things somewhat working the garage sale and doing some yard work the day before. But hey, we had some things to get rid of and were delighted to pass some items along for free. The girls who bought the bracelets were adorable! I couldn’t resist letting my initial Trinity Jewelry by Design originals go for 1/6 the original asking price just to see the smiles on their faces. Of course the older sister next door would need and extra one for her sister who was away at a dance competition so 2-for-1 would be the best deal for her. Same thing applied to her sister’s best friend who was in the midst of a little object lesson about not taking money from her mother’s purse to buy bracelets! Lesson was learned and we had smiles all around. I was so delighted to send them along and tell them the significance of the 3-bead design (for the Father, Son, and Holy Spirit!). They looked down at their bracelets like they were hearing it for the first time. That’s cool. As they wear them each day I pray that the Lord brings more promptings of His love and gift of salvation through the Holy Trinity.

It’s Monday, I am breathing better today, and I feel reasonably stable. The windows have remained closed as every-other neighbor seemed to be getting their lawns treated today with fertilizer and pre-emergent weed killers. Ah the scents of Spring! All fragrances don’t seem to bother me but I am not taking any chances one day after an imaginary trip to the ER. Imaginary? Oh sure, it’s all in my head you see. They gave me a repeat psychiatric diagnosis probably leftover from the last time I was there over a year ago. It didn’t matter that my biotoxin medical doctor from Michigan graciously called the hospital on my behalf with an update. Chronic Inflammatory Response Syndrome just isn’t on their radar. The ER Doc seemed to give the impression that he was understanding that the difficulty breathing, obvious seizure attacks, and intolerance to the cold hands of the admitting nurse were related to CIRS. It has its own ICD-9 code don’t you know? I guess they do not. Out came the “non-epileptic seizures” and “feeling nervous” diagnoses. I never said I was feeling nervous! The third diagnosis was “tremors.” Yeah, tremors that make your head bang aren’t really tremors are they?

Non-epileptic seizures have TWO causes: 1) biological and 2) psychiatric. Most medical professionals ignore the first cause. If they were psychiatric they would happen only when I am under stress or have a need for secondary gain (like attention or control). Sorry Doc. These episodes happen unannounced, unprovoked, and at happy times. They started with an exposure to a cyanobacteria when kayaking in a local reservoir with my beloved and some fun people. I love my life with Steve and in general. I am so blessed and grateful for so much even during this time of illness. Armchair psychiatry without a work-up is wrong. Test me. I have nothing to hide. So frustrating.

Shortly before the completion of the IV fluid and Benadryl treatment, a nurse came into the room to announce that the nursing shift had changed. She checked the monitor and recorded my vitals before leaving the room in a puff of noxious and cheap perfume. WHAAAAT? Why do you think I am in the EMERGENCY ROOM NURSEEEE POO? When she returned I gently but firmly asked her to leave and not return due to the same. She said she had received “report” and knew why I was there. HELLO? ANYBODY HOME? Two other nurses came in a bit later and before the IV pump alarm was set to go off (another sensory trigger). I appreciated their timing and thanked them. A bit roughly they disconnected the IV, removed the IV in my arm, and began to hurry us along. Time to go! I had to ask them to wait a moment as my body started seizing from the shock of the needle coming out of my arm. Hey, it happens every time a needle goes in or out don’t you know? I really can’t make this stuff up don’t you know? It simply isn’t worth it and would take too much energy anyways. Just look at the outpatient records from the 21 IV magnesium treatments at that same hospital this past October and November. Same reaction.

I felt numb on the way home. My incredible husband made sure I was settled and quickly got outside to mow the lawn before dark. I ate a light dinner as fast as I could to gain some strength before giving into the incredible fatigue. Tic attacks woke me up several times as I slept for about a half of a day total. The ordeal was over. My third trip to the ER since becoming ill October 11, 2011 was over.

What do I do now, I wonder? I mean there are binding agents that I can’t tolerate (chlolestyramine and Welchol) and one that I can (activated charcoal) tolerate but the latter doesn’t register on Dr. Richie Shoemaker’s biotoxin illness protocol. During a wretched episode earlier last week the Lord gave me some insight that the activated charcoal might work better for me. So a few grains of AC is all I am doing for treatment in addition to my own election for a mold-free, Candida, low oxalate diet. Oh yes, and our home will become a safe-zone to reduce exposures. Sadly there will be no more monthly home group. I spent the last one in my bedroom with seizure attacks while the group worshipped, prayed, and fellowshipped in our living room. Even the hint of fragrance amongst them was too much for me. Sigh. I need the fellowship Lord! And what about the friends and family who will be in town for my husband’s son’s wedding next month? This is a heartache for both of us right now. I love Steve’s adult children and his family. I am grateful for them. I guess I’ll be Skyped into the bridal shower . . . And I doubt that I will be able to enjoy playing hostess to family that has not seen our home beautified since they were last here for our wedding 7 years ago. It’s just so very risky. Maybe it will be warm enough to visit on our lovely patio. Hope so.

Oh well. We’ll figure out something. We always do. Better leave that one for a future blog. More prayer is needed before then fer shur. JJ

Mike and Me

Published on April 14, 2014April 14, 2014 by Jesus is for the Wounded5 Comments

I just found out that my brother (Mike) had a stroke and is hospitalized in Detroit, Michigan. I’m calling on you, Gentle Readers, to please pray for Mike, Mike’s fiancé (Lisa), her son (Alex), and my husband (Steve) and me as we face this situation.

Our grandparents, parents, and youngest brother (Robert) are now deceased. Mike had just started a promising new job and got back in touch with me as interest in our father’s business (Dyna-rewind) resurfaced after almost 50 years. My heart is heavy and sad as we all face the unknowns in the days to come. I pray that I will be well enough to travel to see everyone in the Detroit area before too long.

Thank you. More later. Just Julie

The Waiting Game

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

TREATEMENT UPDATE: The new doctor I saw on Monday ordered more tests. My treatment plan is thus delayed. My response to high CBD hemp oil waxes and wanes. At least it prevents seizure attacks most of the time when I am in a completely controlled environment and can arrest them some of the time when they break through. But if someone enters my bubble at home with but a speck of perfume or exposure to mold in a water damaged building then there are fireworks! So I’ve got three more weeks of guessing what the heck to do . . . Holding on and talking to the Lord a lot.

Or holding it? Gotta laugh too.

Psalm 71

Published on February 18, 2014February 18, 2014 by Jesus is for the Wounded1 Comment

Psalm 71

¹In you, Lord, I have taken refuge;     let me never be put to shame. ²In your righteousness, rescue me and deliver me;     turn your ear to me and save me. ³Be my rock of refuge,     to which I can always go; give the command to save me,     for you are my rock and my fortress. ⁴Deliver me, my God, from the hand of the wicked,     from the grasp of those who are evil and cruel.

⁵For you have been my hope, Sovereign Lord,     my confidence since my youth. ⁶From birth I have relied on you;     you brought me forth from my mother’s womb.     I will ever praise you. ⁷I have become a sign to many;     you are my strong refuge. ⁸My mouth is filled with your praise,     declaring your splendor all day long.

⁹Do not cast me away when I am old;     do not forsake me when my strength is gone. ¹⁰For my enemies speak against me;     those who wait to kill me conspire together. ¹¹They say, “God has forsaken him;     pursue him and seize him,     for no one will rescue him.” ¹²Do not be far from me, my God;     come quickly, God, to help me. ¹³May my accusers perish in shame;     may those who want to harm me     be covered with scorn and disgrace.

¹⁴As for me, I will always have hope;     I will praise you more and more.

¹⁵My mouth will tell of your righteous deeds,     of your saving acts all day long—     though I know not how to relate them all. ¹⁶I will come and proclaim your mighty acts, Sovereign Lord;     I will proclaim your righteous deeds, yours alone. ¹⁷Since my youth, God, you have taught me,     and to this day I declare your marvelous deeds. ¹⁸Even when I am old and gray,     do not forsake me, my God, till I declare your power to the next generation,     your mighty acts to all who are to come.

¹⁹Your righteousness, God, reaches to the heavens,     you who have done great things.     Who is like you, God? ²⁰Though you have made me see troubles,     many and bitter,     you will restore my life again; from the depths of the earth     you will again bring me up. ²¹You will increase my honor     and comfort me once more.

²²I will praise you with the harp     for your faithfulness, my God; I will sing praise to you with the lyre,     Holy One of Israel. ²³My lips will shout for joy     when I sing praise to you—     I whom you have delivered. ²⁴My tongue will tell of your righteous acts     all day long, for those who wanted to harm me     have been put to shame and confusion.

**********************************************

Tonight as my body thrashed about I cried out to the Lord, asking “don’t you see me?”

Tonight I cried out for the Lord to take me, as in take me home. He did not answer.

Tonight I cried out asking Him not to leave me here this way. He did not answer.

The after burn of the seizure attacks, flu-spikes, chest compression symptoms making breathing labored, increased pain, and massive neck headache was unbearable once again this evening. Things are getting worse. This was my third episode today with over two dozen individual incidences!

My precious husband got out of bed after 1:00 a.m. to get me something to eat in an effort to end the tic attacks that would not stop after the seizures.

It is now over an hour later and I am stable. I am beat up. I am still here!

I will remind myself to have hope, to cultivate hope that comes through faith in Jesus Christ. Sometimes He speaks and sometimes He is silent. And for those who believe in Him, He is always present.

Psalm 71 puts it all together for me right now, so this is how I will pray as I go forth from this night. And that’s about how far I have gotten. My tummy hurts. Time to go back to bed. I think I can sleep now.