A lupus survivor's cerebrations on living day to day...

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    Lupus "Balloon-Head" Ruins Another Dinner

    Was having such a good day, began cooking dinner. i have been waiting for a day I felt "smart" enough to make authentic spaghetti & meatballs for my son...but my lupus balloon head took over this evening. the results: a pan of crispy burned meatballs. I really want to cry. 2 lbs of good meat wasted. But mostly disappointed that I couldn't come through with the meal for my son. Until recently, he has been fending for himself. Actually he has been doing all the cooking since my brain began to deteriorate so much that I could not complete the steps to make a decent meal. I am still far from being able to manage cooking the way I used too, but I am improving. So on the days I feel clear headed I try to prepare some of the dishes I used too. Especially my son's favorites. Because I realize how little time I have left before he is off to college. Perhaps burning tonight dinner seems trivial to cry over. But for me, its a rare occasion for my mental and physical status to allow me the confidence to make a real meal. Today I promised my son I would make him whatever he wished. I began cooking feeling fine. Then that weird feeling of being heavy and light headed at the same time hit me. I had to go sit in my chair, thinking it would pass. Then my son comes in the room saying something about the smell. I suddenly became conscious of my surroundings again. Our apartment was smoky. I had lost track of time and what I was doing. I discovered I had let the pan of meatballs for the spaghetti burn to crisp. My son just reached over an gave me a hug, telling me it was okay. He could see I was about to cry. So I am trying to be patient with myself. Trying remind myself how far I have come. It wasn't that long ago I wouldn't have even attempted to roll up a meatball. It hurts that I can't even say when I will feel competent again to try this meal again. It may be tomorrow...or not. I try to just live in the here and now. Never commit myself to more than the present, because I can never predict my physical and mental abilities due the lupus.

    Nothing New from New Rheumy...

    Finally got to my second rheumatologist appointment. With all the good reviews made by all the other physicians I've seen, I have high hopes for this man. w discussed test done last visit. My WBC was high probably due to long term use of prednisone; all my antibody test were good, except double stranded DNA. But it wasn't remarkable. He is still considering Cellcept as a future option to allow reduction of prednisone dosage. Doctors concerned about my suppressed immunity took me off Cellcept last year during hospitalization for colostomy. We didn't even discuss Cymbalta. Actually, the frequency and intensity of my fibromyalgia pain has improved now that my kidney stones have settled down. I reminded him that my greatest concern is my neurological symptoms. Physically I am feeling more stable than I have in been the past year; but my brain continues to frustrate me. When I asked my new hematologist for an explanation for the myriad of neurological symptoms that still come and go, she suggested that a previous CVA caused some permanent damage that has upset the circuitry and chemistry. With the recent discovery of nodules on my thyroid during neurological scans and hyperthyroidism indicated by blood tests, I began to wonder how many "crazy" symptoms can be blamed on my glands. I had also heard that many lupus patients develop hyperthyroidism. I asked my rheumatologist whether lupus or my drugs were responsible for hyperthyroidism. He says that Lupus nor steroid responsible. Although hyperthyroidism is also autoimmune disease that SLE isn't a direct cause of hyperthyroidism. Patients with one autoimmune disease are predisposed to having another autoimmune disease. He wouldn't give an opinion on my balloon brain, until he's gotten the endocrinologist input on hyperthyroid.

    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!

    To Sleep or Not to Sleep? Thats the Question Asked by Lupus & Fibromyalgia Survivors

    Most people don’t realize that the inability to sleep is the symptom and the side-effect with the most profound effect on the quality of everyday life for a survivor of lupus and fibromyalgia. A recollection of my experiences this past week illustrates the dilemma posed by the title, TO SLEEP OR NOT TO SLEEP.

    TO SLEEP. Last Wednesday, I had a plan. I expected to come home from my last weekly iron infusion go to bed early taking advantage of the sedative effects of the Benadryl for a deep restorative sleep. See previous blog. That evening my deep sleep was disturbed by a terrible nightmare. Once I was fully awake I realized the nightmare was a subconscious rendering of the terrible painful spasms coming down my left flank down to my groin. I was soaking wet! It was the familiar labor pains for the kidney stone, no doubt. I was up all night in nauseating pain despite the Oxybutin and ice pack. NOT TO SLEEP.

    Thursday, I was grateful to finally get the first of 3 ingrown toenails surgically removed. A step toward solving another painful situation that’s been nagging me for years. Unfortunately the hard wooden chair in the waiting room wreaked havoc on my lower osteopenic vertebrae. The residual soreness from birthing a 7mm urolith (what MDs call kidney stones), the ache of my lower back bones and remaining tender toes, was just enough to instigate a fibromyalgia pain flare. You know: pain begets pain. Although not as miserable as the night before, I suffer another fitful night’s sleep. The pain paradox: Sleep decreases pain. Pain decreases sleep. TO SLEEP OR NOT TO SLEEP that’s the question! For anyone suffering from fibromyalgia the question is will we sleep or not. We are caught up in a vicious cycle of trying to get restorative sleep that helps relieve our fibromyalgia pain. On the other hand we are trying to control our fibromyalgia pain so that we can get some sleep!

    NOT TO SLEEP. Friday morning, I awake at 4:30am. That’s the magic hour that no matter what, my prednisone enslaved body clock awakens me. Occasionally after a trip to the bathroom, my morning meds and a light breakfast I can ease back into the most restful sleep possible around 9 AM. I have no explanation for this other than a decade of experiencing this sleep pattern. Unfortunately my environment and responsibilities don’t always allow me to sleep when my body signals me to. A beneficial side effect of last Wednesday’s IV steroid pulse is a boost in energy, so this Friday I am feeling it. Before dawn I am already bouncing from place to place like a busy bee getting stuff done about the house. My mind’s racing a bit too. I am talkative and extra optimistic. This is all good until Friday night arrives and my body has no intention of giving in to sleep. Actually there’s no sleep to give in to. I am wide awake. Not the least bit drowsy. I am guaranteed to be awake all night. Even the smallest amounts of the sleep depriving slave master, the corticosteroid Prednisone shackles its users with insomnia. I have been enslaved by steroids over 15 years and so far no prescribed tranquilizer, antidepressant, or other sedating drug has ever liberated me from its sleep depriving side effects. Under the whip of my steroid induced mania I try to do something productive. Thank God for the internet!

    TO SLEEP. Predawn Saturday instead of awakening at 4:30 AM, I have already been awake all night. I feel a sudden yawn indicating an opportunity to give in to sleep. By 8:00AM I had escaped my steroid taskmaster long enough to slow down the incessant flow of thoughts and fall into a natural sleep. With a little more uninterrupted slumber I might hit the jackpot and achieve REM sleep. Phone rings. Should I let my voicemail handle it or should I step out of this rare cozy slumber to answer? I better answer. A phone call this early must have purpose. Good I answered. It was my best friend, who is still learning the idiosyncrasies of my fibromyalgic neuropsychiatric lupie lifestyle. Knowing I was at home, she might have worried if I had not answered. We need a push button to update voicemail greeting, just like an IM status, to say “Sleeping, check you later.”

    Anyway, back to the point. TO SLEEP OR NOT TO SLEEP: That’s the decision lupus and fibromyalgia survivors have to make when the opportunity for sleep has bad timing. Although I was happy to get the offer to go Krogering from my good friend who was making time in her busy schedule to give me a ride, I had to contemplate whether giving up the chance to sleep was worth getting my monthly grocery shopping done. I considered I could probably stretch my stock on hand until next week. I had to also consider, I wasn’t having much pain and my brain was rather lucid. Even though the chance for a good sleep seemed imminent I was taking a chance on missing opportunity to shop while my fibromyalgia pain was low and I didn’t have the “balloon head”. Feeling somewhat rested on the few hours of sleep so far, I decided to get up and go. I enjoyed a really productive day on the 3 hours sleep achieved Saturday morning. Feeling so well Saturday I went to sleep that night with great expectations for Sunday including going to church and cooking dinner.

    Sunday morning I was awake at dawn after sleeping through most of the night; however, though I was not really sleepy I was not rested. In fact I felt absolutely exhausted. My stiffening joints and that feeling of impending pain lets me know precipitation was in the forecast. Early morning pain and nausea is not unusual. I did my stretches, and added an immediate release MSContin pill to my morning meds hoping to resolve my fibromyalgia pain and inflamed joints by the time I needed to get ready. By 8:00 AM I was faced with the familiar dilemma TO SLEEP OR NOT TO SLEEP. Although my fibromyalgia pain would have responded better to a stress free quiet restful morning, I decided to sacrifice the comforts of home and call for a ride to Sunday school. I wasn’t motivated by some masochistic view of suffering by going to church. I was motivated by the willingness to spend some spoons (non-lupie translation: spend some energy) and suffer some discomfort to fellowship with my best friend and new neighbors. If lupus and fibromyalgia survivors wait to feel energetic and pain free to participate in life’s events, well we’d never take part in anything. I chose the opportunity to share an experience with my best friend and fellowship with her church. Although the enjoyment I expressed was sincere, I suffered significant pain inflicted by unforgiving church seating: the Sunday school‘s metal folding chairs and the sanctuary’s thinly cushioned pews. In addition the lengthy morning service depleted my energy reserves. Lupus survivors have to suffer discomforts, negotiate time and energy constantly just to maintain our bodies and household responsibilities. So often socializing means a conscious decision to sacrifice limited energy and suffer discomfort to participate in activities with family and friends, even events that everyone else takes for granted as simply enjoyable or fun.

    TO SLEEP. Last Sunday’s pain was the beginning of a miserable week 7-9 scaled neuropathic pain unresponsive to any medication inciting manic nights of insomnia and other neurological chaos. By Saturday I felt the pain lifting from my exhausted body and an overwhelming feeling of drowsiness presented the opportunity TO SLEEP OR NOT TO SLEEP! My friend called, informing me of the beautiful warm sunny day, perhaps hinting I should get out. No way today, these blinds are staying closed and I am going to sleep as long as my body will let me.

    I’ve often been asked, "Don’t you take pain medication or something for sleep". Well yes, but often prescribed meds don’t work consistently. Some stop working over time. Doctors can’t tell which meds are going to work for which patients. So for patients it’s a trial and error process to find the right drug combination for results. Some patients don’t respond to drug benefits, or they have negative consequences with side effects. Occasionally either insomnia or pain doesn’t respond to medication and the patient has to ride it out. Over the years, I opted for some out of the box alternatives for sedatives such as my lavender candle, Celtic and Norwegian sopranos’ songs, Pranayama Yoga regulated breathing meditation, old fashioned prayer and journalizing/ blogging my thoughts.

    It’s really important to get family and friends to realize how precious sleep is to your health as well as respect your opportunities for sleep. It’s important that patients communicate sleep problems and any special conditions needed for improved opportunities for sleeping well so that family and friends can support you.

    3 H's of Corticosteroids Surprise Side Effects of Weekly Iron Infusions

    I actually look forward to my weekly iron infusions. My new hematologist recommended a 6 week course to strengthen my iron deficiency. She did a broad spectrum of tests in addition to my INR/PT test critical to managing my APS. Alls well with my blood. My ANA and other indicate autoimmuninty under control. Although Im not anemic and blood counts are normal, my cells seem to be lacking in iron the essential ingredient for blood to function. Iron is a mineral that --bonds to--carries vital oxygen necessary for all cells to thrive. Providing a supplement of iron intraveneous is the most efficient method of reinforcing my blood. Iron deficiencies may occur for a numerous reasons especially poor diet. My mildly deficienct blood probably the result of thinning blood and poor absorption through digestive process. For this reason, oral iron supplements may not be as effective.
    After my first visit I learned the process is almost identical to the chemotherapy infusions (Cytoxin) I'd had previously, except 48 hours later instead of feeling weakened and nauseated, I feel strenghened and have greater appetite than ever. In my case, the actual iron infusion last only 1 hour. The first step (after trip to ladies room) is to check vital signs, blood pressure, temperature, etc. The most difficult and only potentially painful step is the insertion of of IV line. I am running out of good veins, but I have an adroit hematology nurse. My hematologist chooses to take some preliminary steps to deter side effects or allergic reactions. I take 2 extra strength Tylenal tablets orally to deter potential side effects of achiness or mild flu-like symptoms. A small syringe of Benedryl is pushed into the IV line. The a second syringe of a corticosteroid is pushed in slowly (about 2-3 minutes). Its purpose is to eliminate the allergic reaction that occurs RARELY. Much easier to prevent than have to respond to a dangerous anaphylaxis. But the nurse watches me very carefully and questions me during the infusion for any irregulararities especially signs of throat tightening.

    There are some advantageous side effects I am scheduled for Wednesday mornings. The sedating effects of the Benydryl allow me to come home an enjoy a long satisfying nap the rest of the afternoon. It probably counteracts any nervousness caused by steroids. After a good rest on Wednesday, Thursday morning I am awakening with a little "boost" from the pulse of steroids. My joints aren't as stiff and I found my movements were more fluid and quick. No cartwheels, but I was doing everyday stuff without any thoughts (like a normal person). Getting out of my chair, showering, or unloading the dishwasher weren't so challenging. By the weekend I am eating everything in sight. I become giddy scaring my teenage son with my loquacious euphoria. "Mamma are you on drugs!" he says as I talk him into a corner about some grand scheme my maniacal mind has dreamed up. I had the 3 H's of corticosteroids: HUNGRY, HYPER & HAPPY

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    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.

    Digital Scrapbooking: Therapy for Maniacal Insomnia

    I have discovered a new hobby..digital scrapbooking. I've been wanting to scrapbook forever, but no funds. This digital online interface works well with my latest neurological deficits. You can mail camera phone shots directly to your photobucket albums. The Scrapblog application allows you to upload any image from your photobucket albums. After saving your scrapbook,it becomes a slide show in your photo bucket album. Each page of scrapbook becomes a JPEG file capable of being edited and shared independently. Fun program, but a memory hog. Its moves PAINFULLY slow on my old IBM T40 512RAM. And really it must have been designed for a 17 inch screen...I wasted hours trying to find the 'done' button which does not display under normal IE browser settings.To navigate program's full dashboard, I had to toggle the browser window zoom between 100% and 200%. There were a million other bugs that had to be overcome before successfully publishing the final product. I lost an entire page I painstakingly worked on because it would not save my edits. The results were so pleasing I will probably toture myself to create another scrapbook during my next maniacal insomniac episode.

    No that's not a view through my window

    Unless you count Windows XP...its my holiday screen saver! This is all I need to take down before New Year's Day

    Luppie Brain Confession: Forgotten Gifts

    I took great care shopping around the internet to decide on these two well wrapped gifts. I ordered them custom wrapped in November well ahead of Christmas! But that was November 2007. I hid them from myself, neglecting to deliver them for Christmas 2007! Well undiscovered until Spring 2008, I decided to just wait for Christmas 2008. Hopefully they'll be just as appreciated this year, and that last years ommision has been forgiven and forgotten. I make my confession for the sake of fellow sufferers from luppie brain events!


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