Gotta love a wacky sense of humor! Call it gallows humor if you will. Today it is keeping me sane.
Here are a few momentos as I support my brother, Mike, recovering from a stroke. Enjoy! JJ
Inspired by Michael
Tag: recovery
Biotoxin illness not Lyme disease for me
As of yesterday and my second appointment with a biotoxin illness specialist, my hunt for healing will focus on biotoxin illness and not Lyme disease. Perhaps you noticed awhile back that I changed the name of this blog? Join me in finding “Hope Beyond” the challenges of today; for me this blog will always give the praise and glory to the Lord, Jesus Christ when victory comes . . .
I found a remarkable video on You Tube that summarizes mold and biotoxin illness. Please look beyond the promo for his colleague’s book and his mentioning of “ME” or Myalgic Encephalomyelitis. I do not have ME although I understand that biotoxin illness and ME are similar, much like fibromyalgia and chronic fatigue syndrome have similar manifestations. Now that my diagnosis is clearer, I will be largely following the treatment protocol of Dr. Richie Shoemaker at: http://www.survivingmold.com as coached by one of his trained physicians.
See whatcha think and let me know in the comments below. There is hope! Just Julie
The Sister Bear Speaks
While my brother’s fiancé is there at the hospital with him in the thick of things, his next of kin is a bit upset. I am too upset to make any rational decisions. The feelings run deep with me. It’s all I could do to be polite on the phone today to the social worker from the rehabilitation unit where Mike is hospitalized. At least Steve and I have the weekend to sort things out . . .
Very likely Mike will get booted out of the hospital next week and sent to be housed in a nursing home without additional rehabilitation services. His insurance is “Medicaid Pending” and his requiring of 24-hour physical care post discharge, a situation that cannot be met at home for valid reasons, is pushing the hospital to discharge him from their care. I don’t get it. In my 30+ year career in rehabilitation as an occupational therapist, the discharge criteria virtually always hinged on a lack of progress, not the particulars of discharge planning. It’s a new day: a new reality. If you can’t do what the government-driven healthcare system wants you to do then I guess they can wash their hands of you.
Perhaps he will go to a nursing home or perhaps by some miracle the Veterans Administration (VA) will accept him on such short notice. If the decision is the former, he will be fed 3 meals per day, kept clean and dry, and left to sit slumped in an overstretched wheelchair or geri chair in front of an out-of-tune entertainer from the long term care circuit with a pair of maracas shoved into his functional hand. The wailing of the demented residents will woo him to sleep at night as he tosses on his waterproof mattress to get comfortable around the bedsores that no one will find until it is too late for healing. Thickened Pepsi to drink? Not a chance. At least until his fiancé cleans up her make-up from crying long enough to ignore the swale of urine stench long enough to bring it to him. God bless her faithfulness visiting every day through this incredibly stressful ordeal!
Or perhaps it won’t be that bad. Maybe he will get into a VA rehabilitation facility with little red tape and get stronger. Regardless, the hope of at least a few weeks of physical, occupational, and speech therapy has vanished for the time-being. And Michael has no idea yet, what is about to happen to him next week. I left a message for his saint of a fiancé and she has not gotten back to me yet. Maybe she is in as big of SHOCK as I am. Maybe she is exhausted and horrified from touring nursing homes closer to where they lived in the “thumb” area of Michigan. I don’t blame her for taking a little time for herself to sort things out. My heart goes out to Lisa. She has been through so much these past two weeks as her life has changed forever.
As for me, 200 miles to the south and struggling with four hours of seizure attacks multiple times per day, I am overwhelmed with the stress of it all. Just seeing the missing flooring in our bathroom from yet another mold remediation project is enough to stub my toe even when the light is on. Somehow I completed a few errands outside the home this afternoon and made a simple dinner. I talked to a few family members who offered mixed consolation while I was stepping on the elliptical for 20 minutes, phone in hand. Geez! I haven’t used that thing in a few weeks! I must be stressed out. Thank goodness the nightly seizure attack episodes haven’t fully ramped up yet tonight: I needed to talk to you, Gentle Reader! I started to type and there you were. Thanks so much for being here. I can barely speak I am so very upset.
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Life goes on despite the drama of the moment. If Steve and I don’t impulsively drive 3 hours north to go to the hospital tomorrow and I’m stable enough, we will attend the 50th wedding anniversary open house of some friends. It will be good to enjoy some Christian fellowship. Then maybe my beloved Steve will start to work on the bathroom floor tile project and I’ll put together the jewelry orders that have been sitting at my work table this past week. Lord willing I’ll continue with the Spring clean-up of our gardens and Steve will mow the grass for the first time this year. Looks like the narcissus will be blooming within a day or two with their yellow-throated happy faces reaching up to soak up the sun. The sunshine will feel good on my broken frame as well and I will enjoy the freshness of the air this time of year. There’s no better hue of green than that of the tender leaves emerging from their Winter slumber: truly lime, truly sublime too. Some call it “horticulture therapy.” Gee, maybe I should go right now poke my finger in the dirt of the violets waiting to fill the self-watering planters I thought I might plant tomorrow . . . I need a fix of something and a shot of tequila is out of the question these days . . .
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Please pray for us. This sister bear is hurting more for her brother than anything right now. My beloved Steve has been so loving despite the challenges of my illness, demands of his work, and his other responsibilities. Lisa has got to be struggling as well, balancing work, the care of her teenage son (Alex), and assuming increasing responsibility for Michael’s affairs. She and Michael have known each other almost 7 years. Her 13 year old son has a great relationship with Michael too. Oh Lord, hold us all closely this night. Help us. Show us Your love, mercy, and grace. Guide us with wisdom. If it is Your will, heal my brother from the effects of this devastating stroke. Comfort him as he realizes all that has happened to him and show him hope, be real for him on his bed of sickness. He has reached out to you in his time of need. I am grateful for this and grateful that you are here with us. And thank you for the encouragement we find in Your Word:
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4)
In Jesus’ name I pray. Amen.
Just ‘Cause You’re Sick Doesn’t Mean You Can’t…..
Some great insights from a fellow sojourner who is near to the side of recovery from Lyme disease. Perhaps I can add making jewelry? :J
Yes you are in bed most of the time. Yes you feel like that possum that got hit by the truck. Yes you are kind of stuck and down in the dumps. You can’t do most of the things you want to do, so it is easy to get depressed, feel worthless and a burden on society. We’ve all been there, no matter what point in our illness we are in right now.
So since it is so easy to focus on the “can’ts” (which lead to feeling worthless), here are some “can’s” you can do right from your bed. And please don’t put these ideas down as cheesy, maybe some are but it’s the little things that sometimes make the day brighter.
1. Write Thank You Cards “just because”. Are there people in your life that you love and appreciate? How good would it feel to surprise them…
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My Top 10 List: Tools of the Trade
I had a supervisor one time that said, “you are only as good as your tools.” She was referring to the splinting supplies in the occupational therapy clinic that included state-of-the-art warming trays. Thermoplastics used in making upper extremity splints must be heated to the correct temperature or they become gummy; they also might burn your patient’s forearm when it gets too hot! They had a thermometer on the splinting cart which was a luxury in those days. Now with so many choices of materials from which to choose at a variety of temperature specs, having the right tools is standard practice.
Splinting never was my forte but the advice stuck with me. My words came back to me when the men in my life would often repeat this phrase when faced with a decision of whether or not to add to the man cave “tool box!” Yeah, it was usually o.k. with me. Usually a new kitchen gadget jumped into the shopping cart too. 🙂 These days my tools relate more to gardening and my own health care. Here’s a new spin on the latter: your recovery is only as good as the tools you employ for recovery. This post is an addendum to an earlier blog entitled, Keeping Sane While Recovering from Serious Illness. With some tools that are tongue-in-cheek and not necessarily in this order, here goes:
1) Treatment journal, online or in a notebook. Keeping track of medications, supplements, medical appointments, changes in treatment plan, etc. is critical to success. Who wants to make the same mistake twice? My hand-written journal entries are more truncated these days since I’ve got my routine stuff down better and more social supports in place. I do go back to earlier postings and am grateful for some progress. Even if I am not doing better in other areas, I know that I am coping better overall; thank you Lord!
2) Smart phone. When stuck in bed I can still stay connected to the outside world via my social media favs, email, and text. The Bible App is awesome and keeps me in the Word on a daily basis with its Bible-in-a-Year reading program. On my mobile I can also look up what the heck is going on in my body and boost my lame brain with reminders of this or that on my calendar. I was a late-adapter to the world of 4G+ and cannot see going back to a flip phone anytime soon!
3) Fingertip less gloves. My hands and extremities get chilled in the evening. It’s a battle trying to do a few things when I am awake and feeling better in the middle of the night but feel like I’m freezing! The drop in body temp can trigger noxious symptoms so I needed to find a strategy for keeping my hands warm. I was Christmas shopping at Macy’s this past year and there they were in a colorful display: a table filled with mittens that had removable mitts so you could expose your fingertips. Your hands stay warm from the middle knuckles through the wrists. Success! These even come in handy when taking frozen foods out of the freezer or grocery shopping. Grocery stores give me the chills year round. Know what I mean?
4) A really warm fleece jacket with pockets. For the reasons noted above, I finally have something to keep me warm when roaming about the house later in the evening. The softness of the fabric is comforting too. What did we ever do before Polartec? Or maybe for you it is a handheld fan?
5) Fuzzy socks! Yes they are warm. It’s the cute designs and fun colors that make me smile a little when my feet are cold. My cow socks (which were a gift from when my Aunt Patty lived in Vermont) are my favorite. The thicker the better, over the ankle, and loose-fitting too. Such a simple pleasure.
6) Breakfast from a traditional lunch bag. Mornings are the hardest for me. Most days I awaken in elevated pain with noxious symptoms that make it difficult to use the bathroom let alone make breakfast. Finally the Lord led me to a solution of making my breakfast the night before much like I used to make my lunch to take to work each day. The freezer pack keeps it cold until morning. Many times I am eating food cold that others might microwave/heat up before mealtime but that is not a requirement for me anymore. I just gotta get food in my belly to feel better so a chunk of meatloaf for breakfast it is sometimes!
7) Making the effort to cook or purchase special snack foods that fit within my restricted diet. For example, I think I’ve finally mastered coconut flour pumpkin (or squash) muffins to comply with my Candida/mold-free/low oxalate diet. Pulling a little essence of home-baked goodness out of my breakfast bag in the morning with Earth Balance Organic Coconut Spread, I no longer feel deprived! The recipe is a bit challenging so I double it and freeze them for yummy goodness each morning.
8) Emergency remedies on hand at all times. For me this includes high CBD hemp oil and a charcoal-filter face mask that have arrested an oncoming seizure attack when in a public place more than once. We need to be proactive in managing the crises of our health condition where possible, saving the real emergencies for situations beyond our control, eh?
9) Slip-on shoes and slippers. Who wants to bend over and risk falling on one’s head when weak from illness and needing to cover one’s feet? Yeah, not me either.
10) Something or someone warm and fuzzy. Yes, this can include the stuffed kind or your man with generous amounts of chest hair to comfort us when needed. (O.k. maybe your lady in soft flannel pajamas would apply here instead!) When my beloved is not home our German Shepherd pup gets a little extra massaging. Who knew that a big, protective dog breed would love to cuddle? Elle, you rock.
Well there you have it: my top 10 list of recovery tools. Have some of your own? I’d love to hear about them! Please feel free to add your comments below.
Jesus is for the Wounded 
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