seizures – Page 33 – Jesus is for the Wounded

If I get to see you . . .

Published on January 16, 2015January 18, 2015 by Jesus is for the WoundedLeave a comment

If I get to see you in the coming year, please understand that I will be singing songs of joy in my heart! Social isolation has been one of the most devastating effects of serious illness from these past 3 years. Should the Lord allow the circumstances for me to get out for an activity other than medical or a trip to the grocery store, I CELEBRATE!!!

So if I might ask for a few accommodations when we get together and you graciously oblige and I still get sick then blame any negative symptoms you may witness in me as the consequence of illness and not you! Very few folks live in a “clean room” like we have here at home. I did not clean at this level either until it was a matter of survival. Steve did not engage in my extreme mold/contaminant behavior strategies until two years ago. These strategies are necessary for this season of our lives together. Overall I do better when we follow certain guidelines resulting in less reactivity, the worst of which are fewer seizure-like and convulsive episodes which continue daily. We are implementing some “due diligence” from what we have learned to reduce my suffering with the goal of eliminating this illness altogether. We believe that the Lord has allowed these trials for mysterious reasons and ultimately His glory. He is good!

Both Steve and I recognize that there are definite signs that I am getting better. We have trained our eye to search for even tiny changes in the pattern and intensity of episodes, pain, and reactivity to keep us hopeful that one day I will be well. It is happening! So please don’t be discouraged when either one of us might mention that I had a rough night or you witness a significant setback. Recovery is a long, jagged line of progress, setbacks, and lateral “bunny trails.” The overall trending is positive!

The most important accommodations that would be helpful if we get together are as follows.

Meeting in a public place: Select a place with less noise and less loud music. Newer buildings are generally better than older ones; please no historic buildings or ones with known basements or crawlspaces and history of flooding. Restaurants that make their own food with fresh ingredients are better able to modify dishes to meet my food sensitivities. This rules out most fast food places! Letting me know the name and phone number of the establishment ahead of time will allow me to contact them with my needs and make the experience of ordering food more pleasant for both of us! Please do not wear cologne or perfume that day. I will need to greet you and depart with a “virtual hug” to avoid exposures to hidden elements that might be on your clothing or coat. Forgive me if I sometimes forget this step in the joy of the moment when I see you!

Meeting in your home: This is still a situation that I avoid since there are too many variables at this time that may cause serious problems. I cannot come over if you have 1) ever had flooding in your home of any kind from a leaky toilet to a wet basement or 2) have older carpeting. If you are willing to have me then please remove all fragranced products at least the day before we are scheduled to be together (such as plug-in or spray air fresheners, candles whether lit or not, potpourri, etc.) Keeping windows cracked open in cooler weather or open in warmer weather to allow fresh air inside always helps (unless someone is burning something nearby outside!) I prefer to visit in the area of your home without carpeting and sit on non-upholstered furniture. Wood, plastics, and leather are best.

Staying overnight: If we are invited to stay overnight then we will either bring our own linens, blankets and towels, or ask that you wash and dry everything in fragrance-free detergent and softeners (including dryer sheets). Please replace a moldy shower curtain liner with a new one! I will bring most of my own food and hand soap where possible. Providing non-cured, non-smoked meat cooked only with salt, plain oatmeal, plain salad-type vegetables or zucchini/cauliflower without seasonings will be a HUGE treat! I will always bring the extra condiments and food that I can tolerate.

Yeah, I know that this is a lot for a busy household to prepare! Thank you for helping us out with this stuff. Steve and I are exceedingly grateful to have recently obtained a travel trailer which has helped manage all of this tremendously well. (It is a lot of work for us too, I tell ya!) Both of our families and many close friends now live out of State so travel is necessary to see them. This single change in our mode of travel has allowed me to leave our home overnight much more safely and go places from which I have been cut off for most of the past three years. We are humbled and blessed! I really like having a mobile safe house that has already opened up my world, provided privacy during setbacks on the road, and aided sleep with a really comfortable bed that can be hard to find when away from one’s own humble abode at home. Thank you Jesus!

Visiting Daniel and Elizabeth in Alabama

We are hoping that the ongoing extreme avoidance and dietary strategies are temporary; some level of precaution albeit more relaxed than the current level will likely continue for some time. How long will we need to do all of this? We simply do not know. We believe the Chronic Inflammatory Response Syndrome (or Multiple Chemical Sensitivity) is due to mercury toxicity and we finally have the correct treatment protocols to get me well. I have excellent medical guidance and a proven treatment plan to follow. We are hopeful that I will be in better health within this year! I AM GOING TO GET WELL!!!

And that Gentle Reader, is much to celebrate! JJ

It is enough

Published on January 12, 2015January 25, 2015 by Jesus is for the WoundedLeave a comment

We had decided to pack four gallons of water just in case something went awry during our second cold weather camping trip this season. The related online blogs recommended this among other tips such as purchasing a heated hose and waiting to un-winterize the travel trailer until we had traveled enough south to avoid freezing temperatures overnight. And so we prepared accordingly reviewing our long “To Do” list of stuff over and over again before heading out the door. Check!

Just before our departure, arctic temperatures plagued the entire country east of the Mississippi River from Michigan to northern Florida! Who knew that after driving nearly 800 miles due south we would still be facing weather more characteristic of Indiana than our first destination in the deep south of Fort Rucker, Alabama? We had run the propane heater in the Camp Lite a few times back home to minimize the out-gassing of the relatively new-used mini furnace. We intended to fire up both heaters (propane and electric) soon after hooking up everything upon arrival so we could sleep comfortably. Check! After all it would be about 5:00 in the morning when we got to stop number one.

For God is not the author of confusion but of peace . . . (1 Cor 14:33)

We did not count on the entire camper freezing over along the way! I grabbed the hair dryer and extension cord from the cab of the truck and proceeded to thaw out both door locks. Once inside I discovered that the four “emergency” one-gallon jugs of water were frozen solid as was the entire water system “winterized” with special RV antifreeze! We had our two sport-sized bottles of water 1/2 filled with us in the car and that was it. Closer investigation found some frigid water sloshing around in one of the gallon jugs so we gave it to our pup figuring she would not mind the temp. (Sure would hate to have to choose between man and beast on such a night!) Steve used a, er, warm water stream to punch a hole in the toilet ice seal to make it operational for the night. Check!

Hooking up the water and electric did not go well either. The water spicket had frozen beneath the towel that our southern/Aussie host (formerly from Indiana) had prepared before our arrival. Hmmmmm. When the crochety 30 amp electrical hook-up proved to be broken, Steve plugged us into the standard outlet to get us through the night, thus preventing draining our battery overnight. Oh well, we could live without hot drinks in the microwave: we had the warmth of each other after all . . .

But our bedding felt like it had just come off the train from Siberia! Steve bundled up head-to-toe in Smart Wool and collapsed into bed. I tried to join him but the nighttime unpleasantries I often face reared their ugly head first. Eventually the buzzed feeling I had from the late night excitement, convulsions and checking of Facebook yielded enough fatigue to turn everything off in my head for a few hours. Even the sound of street noise 50 feet from our pillows drifted into the distance. We had made it to see my hubby’s darling youngest son and his wife the next day and I was glad. Check!

Many are the plans in a person’s heart but it is the Lord’s purpose that prevails. (Proverbs 19:21)

Who knows why our lives are so difficult these days. The last two times this past year we gratefully were able to camp with the conveniences of a travel trailer in colder weather we certainly prepared as best we could. It’s not like we did not know what we were doing! I perused and posted questions on multiple camping forums to learn from more seasoned travelers. We purchased some special gadgets and kept snow pants, hats and gloves nearby; Steve donned his biking/paddling headlamp upon arrival like a pro to keep his hands free during the late night procedures. I had enough food prepared in individual and meal-sized portions to keep me compliant with my special diet and the skilled driver nourished for most of our first few days away from home. We did the best we could to avoid disaster and this is just how it goes sometimes!

The next day was a blur for me. Yes, we said hello to Daniel and Elizabeth when they stopped by in their Honda Fit (everything is so cute about these two!) midday. I had not eaten breakfast yet and needed some more recovery/rest time so Steve took off with them while I headed back to the tin can ranch. What happened next can only be called a near-death experience! That one deserved its own blog story so I won’t go into it here.

What is clear is that my writing block of late is definitely broken with some new experiences ordained by my Jesus albeit AFGE if you will (aka “another fun growth experience”)! As in the Wizard of Oz when Dorothy turns to her dog Toto after the great tornado, I’ll say it here, “Toto, we are not in Kansas anymore” and that is good. My social and geographical isolation enduring illness at home is now broken for a time. What matters now is faith in the Lord and obedience for His will and I know that His goodness shall prevail. Yeah God!

. . . keeping the commandments of God is what matters. Let each one remain in the same calling in which he was called. (1 Corinthians 7:19b-20)

For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. And we know that all things work together for good to those who love God to those who are the called according to His purpose. (Romans 8:18; 28)

Be encouraged Gentle Reader. The two partial bottles of water were all we needed that night anyways. It was enough and in our hearts we knew it all along. JJ

For this I have seen

Published on December 29, 2014 by Jesus is for the WoundedLeave a comment

The darkest time of night

Brings hope in ways not the norm:

When breathing is restored and the room stands still

My mind clears and my Lord speaks in ways never heard before.

He knows my frame

And delivers me once again

With less pain overall these days

And more wisdom than trauma for all the suffering.

For alas I can go

To such a wretched place

Time and again whilst wondering “why?”

Only to find hidden answers just for me, in the those tender places.

Not all makes sense

And that can be o.k. in the end

When I know the Lord is at the helm

And uses my suffering for His glory, my healing, to bring light, and more.

No, it was not wasted

When I found you who came along

This way with me where the blackest times of night

Served to shine streams of sunshine into days once lived in shades of gray.

Oh to keep mediocrity!

That would be dreadful indeed.

To never see beyond vanilla, boring landscapes

Creeping traffic in the middle lane when the Audubon beckons in a Ferrari 458.

Mach 1 with your hair aflame

Is bound to singe your eyebrows too

But how will you know if you are truly alive my dear

If you have not seen, tasted death along the edges of life truly lived whoot, whoot?

Because when it is over

A job will be waiting for you as me:

To tell our stories to those stuck in the dark

Or on an exit ramp on the wrong road they once thought went nowhere too.

There is always more

Even when our breaths are numbered

When we each see the door to the last destination

And can no longer wonder if we did too much or too little when our past cannot change.

The door to eternity awaits us both dear one:

With adventure of which we cannot conceive;

A place filled with wonder and no more tears

Where our heart will be home, finally, at last.

Will you risk this to be true and come to Him?

Will you lay down your fight, the need to know

To let Jesus Christ be your true reason to live:

The Alpha and Omega, the beginning and end.

Even when in our hearts we must let Him reign

Leading our thoughts and quieting all our fears

Adding His increase when no strength remains.

Finding this kind of peace transcends all we see:

We will find more than the mind can imagine for

We will live at peace I tell you for this I have seen.

:JJ

Gotcha! ;J

My Facebook Family Understands

Published on December 29, 2014December 29, 2014 by Jesus is for the Wounded2 Comments

Thank the Lord for Facebook!

Remember that John Lennon song from the 70’s, Whatever gets you through the night . . . it’s alright . . . it’s alright by me?” Well I am not endorsing riotous living by any means! I am saying that for me this past weekend, having a Closed Group in which to vent some drama was my “whatever” that got me through a couple of unusual nights and days when everyone else was asleep. Thanks for being there Cyber Friends. Here they are, out in the open:

Friday

Up very late again after the Lord added His increase so I could do some baking. There’s one more day to go entertaining in our home while trying to: avoid toxic (chemical & mold) exposures and squirrel away when the convulsions come. My hubby’s kids have done a reasonable job following our precautions, thankfully. I’ve missed some activities again this year. (For example, a partial Skype date with more family when I had to leave for an hour-long noxious episode!) Sometimes I feel like I have disappeared and other times it’s just me spending so dang much time in the kitchen preparing my special diet. Guess I’m glad I finally got my stuff done! I’ll have more food prep help tomorrow. Hey thanks for listening!

Saturday

Strangeness abounds! Still alone again after not being able to get up to join family due to wretched convulsions. Instead of making a nice honey maple ham dinner (for which I had prepared last night) my husband’s daughter made a different lunch for everyone. I was still in bed seizing! Now I’m up eating my special food alone with you and the Lord in front of our pretty tree.

The fam went indoor go-kart racing! Before they left and whilst praying the spiritual warfare would end, I got a text that my ex-husband needed to contact me for the first time in 10 years! Could he have gotten saved? So my time alone now has been tranformed into a prayer time.

No worries. The Lord has me and you gently in the palm of His hand. I see He may have “others” there too and it is all good.

Update to follow . . . With love, J

Sunday

Finally stabilized and was able to go out to eat with relatives after a wretched morning (aka husband carrying me to the bathroom then bringing me some food before I crashed for another 2 hours while he went off to church). No, the ex did not get saved so I will continue to pray if he comes to mind and in the meantime block further communication for sanity reasons.

Sometimes it just helps to vent the drama that characterizes a life with serious illness. I’ll bet that many of you reading this get it. Our “new normal” never really feels normal at all. I rest in the fact that the Lord sees all and carries me though each breath. When I couldn’t breathe later last night in repeated seizes, I reminded myself that I ain’t dead yet so it must be all uphill from here! “Trust in the Lord and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths.” Proverbs 3:5-6: you rock! It’s gonna be a better week! :J

Addendum:

Have a blessed couple of days, Gentle Reader, making the most of whatever is remaining in 2014. With a ton of yummy leftovers in the frig and sweet Christmas memories too, it’s going to be alright, alright, alright by me too. :JJ

When I look up

Published on December 1, 2014December 1, 2014 by Jesus is for the WoundedLeave a comment

From my truck I see kayak racks: looks like it’s time for a road trip South.

From our flagstone patio I see the bluest hue of sky that comes with the chill of this season.

From my jewelry studio comes the reflections of many table lamps bouncing off the walls as I strain to create, to sew, to knot into the night.

From our bed I ponder this life as the hours pass in the dark, in the light since the popcorn ceiling never made any sense when I tried to connect the dots up there anyways.

From lying on the kitchen floor I cover my eyes and cradle my head to minimize the brightness of the nickel light fixture, the damage from the internal unrest tossing me about, and the discomfort from not making it to the bed in time. The pup sniffing my hair is sweet indeed.

And when I look up from my heart to my mind’s eye I see my Lord who whispers His words of comfort that this strife too shall pass. He makes all things new don’t you know and this happens whether we can see it, feel it, find it in this fleeting moment of a day. This is where I must persevere as I never cease to look beyond today to a better tomorrow. It must come. It will come! Oh yes, it does.