Family & Friends a part of the Healing Process for The Mind, The Body & The Spirit

I was getting a little depressed Wednesday having the plans I made on the days I felt good being usurped again by my illness. Although I couldn't get around, in between my feeble mindedness I had some brain storms about future goals with my lupus website and potential social networking consulting. Yesterday morning I felt even worse because the antibiotics had caused me to get "yeasty" inside and out. Luckily I realized I had a back stock of Diflucan pills and Nystatin for my mouth sores. I got teary when I looked at the time which was around 11am. I had lost track of the time since waking up at 6 in the morning going in and out of my "spells" while trying to will myself to get up and complete a list of tasks stuck in my mind. Finally, my son gave me a pep talk to get me to just give in and try to relax. I received a call from my new neighbor. She was taking special orders from all her girls for a weekend meal to feed us through the forecasted snow storm. After 2 bowls of Mrs. Wanda's stew and cornbread, last night I finally fell asleep -- sound. I am feeling a bit better this morning.

I just wanted to share my week and express how family and friends can be powerful agents for healing. Sometimes more powerful than any medication. There was no antidepressant or anti-anxiety pill I could pop to immediately break a manic cycle of thoughts that often are apart of our disease. Lupus and fibromyalgia survivors often fight tension, mood swings, anxiety and depression as a part of drug side effects as well as the disease process. With just a few objective words my son made me to realize my tasks could wait and the world wouldn't come to an end. After easing my worrisome thoughts with words, a gentle touch of his hand in mine helped ease the tension caused by my "spells". ( Read Neuropsychiatric manifestations under Signs And Symptoms)

My neighbor's thoughtfulness and generosity went beyond just calling to see how I was feeling. Realizing I was without transportation she wanted to make sure I was well stocked before the storm. Understanding my current disabilities she prepared a nutritious 1-pot meal that would be easy to reheat and easy to serve and eat with a bowl and spoon. My son became apart of the healing process for The Mind, while my neighbor for The Body. Their sincere acts of love certainly were healing to The Spirit. My point is the people around can be instrumental to improving the quality of our life despite having a incurable chronic illness. Our family and friends are an important part of Healing The Disease through healing The Body, The Mind, & The Spirit!

Tuna & Milk Don't Mix

Warning: graphic descriptions!

After replying to concerned facebook friend that I was feeling very well. Uncharacteristically well. The bliss I'd achieved over my sunny relatively pain free Sunday ended abruptly by midnight. A series of innocent events initiated a path to misery. I decided I was feeling lucid enough to prepare quick "tuna mac" in microwave. I successfully read and understood directions, remembered to turn off space heater. Forgetting would have meant lights out! I would have to grope in the darkness down the stairs and into the cold night air to reach the outdoor storage room feel for the circuit breaker to flip the switch. I returned to my laptop and prop of bed pillows. await the 7 minutes timer for the noodles to cook.

There's the familiar heavy lightness in my head. My eyelids flip and squint uncontrollably a few seconds as a vision of my son standing over me takes focus. He's asking whether I’m still making the tuna mac. I soon realize that I had lost some time to one of my "spells." My son assumes I've been nodding. He had avoided coming in my room because he was apprehensive about disturbing a rare nap. But as he examines my blank expression he catches my fixed gaze directly into his eyes. He realizes. He softly lays his hand on one of my paralyzed limbs. The gentle stimulus is enough to awaken my neuronal activity. I twitch all over as if shivering from a sudden icy breeze. This time he asks if I want him to complete the meal. I blink my eyes exactly one time and project my thumb up for the affirmative signal. I continue to concentrate to escape my altered state of consciousness. My body began to respond slowly to my mind. Obstructed by my heavy twitching blinking eyelids, with all my will, I focus. My brain slowly executes my thoughts. With great effort I see my arm rising in slow motion to bring my hand into view...

After laying immobile, mute, and hungry, I mouth a request for my nutritional drink to relieve my growling stomach. My son served me a bowl of the unseasoned tuna mac prepared with the recovered soggy noodles. It was pretty awful but I managed to eat most of it, just so I could take my medications. Unsatisfied, but being the end of the month, having nothing left in our pantry but a little cereal, I decided to fill up with Crystal Light and save the cereal for tomorrow's breakfast. Still feeling balloon headed I turned back to my position propped upon the bed pillows with my keyboard. The slight comfort of fullness became more of a bloated tightness. Slow vibrations accompanied by a wave of warmth ran across my body. It wasn't just my stomach growling, I felt the familiar cramp of a griping colon. After weeks of severe constipation I wasn't rushed. Perhaps this wasn't a false alarm, I'd been avoiding white bread and cheese, eating Fiber One bars and gingered green tea mornings and Ramen noodles for lunch, and hydrating myself with water and lemon, hot or iced in between. Oooooh no. Suddenly the mild cramp turned into a sharp constriction of my abdomen violently drawing my knees up to my vibrating belly. With my upper body bent over at 90 degrees I made my way to my bathroom just a few yards from the bed. The relief of a true movement of my bowels was soon betrayed by overwhelming nausea. Rapidly, thickening Saliva fills my mouth, my pajamas become sticky with perspiration, my head weighs heavier than I can hold. As my Vision becomes gray, I fight the inevitable fainting spell. Maintaining my sitting position on the toilet I lean over toward adjacent tub grabbing at the cold porcelain not wanting to hit the floor. I spat the warm thick phlegm hoping to hold back the contents of my stomach. I was praying for mercy against this unrestrained violent reaction of my entire gastrointestinal tract, praying that I would not be found by my son exposed and humiliated in a puddle of my own feces and vomit as I was by hospital orderlies in 2004 flare caused by pancreatitis. Like labor a series of uncontrollable relentless convulsions beginning deep in my bowels thrusting my whole body forward and projecting the contents of my gut up to my esophagus and out my mouth. The first thrust, mostly liquid with lemonade and meds seemed mild compared the second thrust of undigested tuna mac. I revisited that tuna mac two more times before dry heaving began. I held on to the comforting coldness of the side of porcelain tub too weak to move trying not to breath in the fumes. Eventually the blood that had rushed to my head found some equilibrium with the rest of my body. I managed to raise myself up again. I removed my robe fully dampened with perspiration, but remarkable only mildly soiled by a spot on the collar. After cleaning myself, I found the strength to make it back to my bed, but still shaking I decided to walk to my son's room realizing he wouldn't hear me over his heavy metal music.

I plopped myself on his twin bed and briefly explained I needed ice. This not being the first time, he knew to grab the "premade" ice pack from my upstairs freezer, I purchased for the purpose of having ice upstairs. As I decompressed from the stressful event a series of neurological events began, twitching, rolling seizures that settled down to a slightly catatonic state. I don't remember much more. I awoke hours later to the familiar clicking of my son's fingers on his keyboard and soft new age music instead of heavy metal. Still muted by aphasia only able to make slow movements, he read my desires from my eyes, acknowledged them with his own. With his assistance, I raised from the bed. Balancing my body with his steady arm, I concentrated on putting one foot in front of the other until we reached my bed. To my surprise he presented the robe I'd soiled. He’d laundered it clean and dry. I put it back on, falling asleep feeling wrapped in warmth and love.

replace material with spiritual

renee, you  blessed me so much with your message. connie was right to encourage you to share ti. and it was so nice to hear your voice. this morning i was coming to my own realizations about my life circumstance. i told my therapist that i am thinking of my life in a whole new paradym. ive been thinking if only i cold restore everything the way it was id get better. in my case, i thought getting new floors from flood damage and repairing all the stuff around here from 3 years of not being able to work. just when i got some extra cash thinking id fix up, my income was reduced even more from lack of child support. thats just the recent events. bottomline its been 2 years of failed attempts to restore this house. its seems that at the same time you were, i was also realizing maybe i just need to let go of my house. even with child support its 2/3 of my income. when my son turns 18 most of my income will be gone. so far i havent missed any house notes. i began objectively accepting worse case scenarios. decided to do what i can to keep phone/dsl, if anything goes first let it be electectircty. we have had plenty experience without power. got lanterns/coolers last summer when cut off over week. like you said, my pride had me worrying about what people even church folk would say to my lights out. but god knows ive done my best with what i have. i doubt many could live a week the way we have. but you said what most important, our spirit, our loved ones. my son told me he didnt care about keeping the house for his sake. he and i have been living in my bedroom since my illness anyway. so that means we only use about 200sf out of 2000. im hoping my son will attend college stay on campus. all i need is an efficency. he can sleep on the end of the bed or the floor to visit.  i already have mini fridge/ microwave upstairs. since i began thinking like this and shut out the rest of the house and its problems, i have felt relieved. all year ive been wanting someone to come help me organize my stuff. now im like thinki ng of just keeping my pictures and keepsakes, and leaving everything else behind me. i havent made any decisions, or taken any actions, but just mentally letting go of the material things ive been trying to maintain or replace has been like a burden lifted. i actually opened my utilty bill, read $456 sat it down and went to bed last night. just last month, i would have went into anxiety attack and worry mode. not sleepping, barely eating until id made myself even sicker. hearing your testimony of letting go, really confirmed my faith and strenghthen my new attitude about whats important. instead of shame over idea of losing my possessions, you expressed so well that i should feel stronger as i replace material with spiritual. god bless

Independence Day Anxiety or Blessing?

With my anxieties about the impending July 4th holiday I was attracted to read threads from Lisa Cohen's discussion topic, "... Recovery from December." With much of my mobility back, Christmas 2007 was the first I'd truly celebrated in 2 years. Without last year's obstacles from family and financial problems, I shopped, decorated, visited and participated in holiday events. But the week following New Years my son and I caught the flu from visiting relatives. He was down for 2 solid weeks, but with my unconditioned immunosuppressed body....I could barely leave bed for 4 weeks. My doctor made quite a fuss, she'd gone extra steps to prevent my exposure during flu season, even giving me cell number to call her directly to avoid waiting room germs. She warned me about the reality of my illness and impaired immunity...invisible to other well intentioned family and friends. Her tough words, "They will all be at your funeral talking about what a sweet person you WERE WHEN YOU WERE ALIVE!" She advised me to set goals and boundaries reasonable to the reality of MY particular health, because the price paid will be MY OWN. My family, friends, or church members encourage me to "participate", thinking "getting out" gonna cheer me up and energize me. Usually I really want to. But too often, I push myself through events...even Sunday service. Afterwards, I find myself home all alone, paying for the "good time" with incredible exhaustion, increased neuropathic pain and mental deficits. So I pray for the Lord's discernment in all decisions about all activities! I remind myself before spontaneously following the summer crowd that will come calling this month. Wisely pace my activities according to my illness and stamina. Most important, don't get caught up in the adrenaline of other vacationers. Make healthy choices about sleep, food and drink. I've learned observing these simple boundaries actually extends my holiday fun.