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

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    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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