tag:blogger.com,1999:blog-75641438296158446142024-02-06T22:39:54.215-05:00To sleep... perchance to dream. . . In peace I will both lie down and sleep;
for you alone, O Lord, make me dwell in safety. . .
Psalm 4:8 (ESV)Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.comBlogger44125tag:blogger.com,1999:blog-7564143829615844614.post-91319256301224676022018-10-21T15:05:00.001-04:002018-10-21T15:31:02.184-04:00Colonoscopy prepI had a colonoscopy on Thursday.<br />
<br />
I am not trying to overshare here, but I do want to write some things down, in case I ever have to do this again.<br />
<br />
For the record, this colonoscopy went <i>much better </i>than <a href="https://ruthmem.blogspot.com/2010/04/other-night-i-actually-went-to-bed-kind.html">the one I had before</a>. I had a real nurse anesthetist, overseen by an anesthesiologist, for one thing, and they gave me propofol. So that was a vast improvement. Also, I was not on a hospital ward where inmates from the nearby prison were also having this screening test. All in all, a much better experience.<br />
<br />
My prep was also <i>much better</i>, but it could have been improved, so I will write out what they said to do, and what I will do instead in the future.<br />
<br />
<u>Their instructions (for a 1 p.m. procedure):</u><br />
Day before: only clear liquids all day<br />
6:00 p.m. take 2 Dulcolax tablets and drink a bottle of Magnesium Citrate<br />
7:00 a.m. take 2 more Dulcolax tablets and drink another bottle of Magnesium Citrate<br />
Clear liquids until 9:00 a.m.<br />
Nothing after 9:00 a.m.<br />
<br />
For me, Dulcolax takes a good 6-8 hours to kick in, so the most obvious problem was the timing of the second dose, which basically kicked in right after the procedure was over. I don't know if there was some reason why they wanted that to happen. I guess I will ask if the occasion arises again. But if that is not what they are going for (and I know it is not what I am going for), <u>I will make the following adjustments to my prep:</u><br />
<br />
(1) The day before the day before (ie 2 days before) --load up on kale and watermelon, especially kale.<br />
(2) Clear liquids the day before, as directed<br />
(3) Take 2 Dulcolax tablets at 12 p.m. (earlier than directed)<br />
(3) Drink a bottle of Magnesium Citrate at 6:00 p.m. (as directed)<br />
(4) Take 2 Dulcolax tablets at 11:00 p.m. (or at bedtime--again, earlier than directed)<br />
(5) Drink a bottle of Magnesium Citrate at 6:00-7:00 a.m. (as directed)<br />
(basically, instead of taking the Dulcolax and the Magnesium Citrate at the same time, I would take the Magnesium Citrate around the time the Dulcolax was about to kick in)<br />
<br />
I think this timing would result in a more thorough cleansing before leaving for the hospital.<br />
<br />
It is very nice having the procedure at 1 p.m., as you are then able to enjoy a black coffee for breakfast before 9:00 a.m.<br />
<br />
This is for my own personal reference only, and not to be taken as medical advice by anyone else. I have absolutely no medical credentials.<br />
<br />
<br />
<br />Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-30666232857878413682017-10-04T15:45:00.000-04:002017-10-04T15:45:36.597-04:00Lupus bills and lupus stressMedical bills stress me out.<br />
<br />
I cannot even.<br />
<br />
Why?<br />
<br />
I am trying to pay a bill today, and I'm having an anxiety attack. It's not even that large a bill. It isn't about the money, even. It is about the paperwork.<br />
<br />
We have a certain allowance from Shawn's company, in an HSA, and we can submit receipts from our bills (after we have paid them) to the HSA, for reimbursement, until this money is used up.<br />
<br />
I don't know any of the passwords to the HSA. I don't even know where the website is. I don't know how to do it.<br />
<br />
Also, it's October. Back at the beginning of the year, we submitted some bills to the HSA for reimbursement. Shawn helped me, because he knows how to log on and submit things. At some point, I paid some bills and did not submit them to the HSA right away. Now, I have a pile of jumbled nonsense on my desk.<br />
<br />
Oh, why is this so stressful?<br />
<br />
I have to pay another bill, and I am beside myself. I shake and sweat. My heart palpitates. I swallow hard, trying to squelch my gag reflex as nausea rises in my throat. In my head, I'm fine. "We can afford this," I tell myself, truthfully. My body doesn't care and won't cooperate.<br />
<br />
On a brighter note, I haven't been to the doctor much this year. When I do go, I lie. I say, "I feel fine. I feel great." Although this is not strictly true, I have noticed in the aftermath that--generally speaking--when I don't tell them about any problems, I don't have to go back as often, and I don't have to undergo expensive labs and tests. This has actually greatly diminished a lot of stress.<br />
<br />
If I could just not go to the doctor at all, maybe I could do away with my stress altogether, and get healed.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-56954635107597812482016-08-05T21:37:00.003-04:002016-08-15T19:13:31.374-04:00Lupus and BCBS -- a deathly combinationRight now I feel like God does not love me anymore because I just was nasty to the nurse at Christie clinic. She called to tell me that Dr. B will not change the code on the General Health Panel blood test to diagnostic, because it was not diagnostic.<br />
<br />
<br />
When I call them, I pray before I call, and try to remember who I am in Christ and be filled with the peace of the Holy Spirit, because I know that these conversations are dangerous battlegrounds for my soul. But when they call me, I don't have time for all that preparation. I just have to pick up the phone and hope.<br />
<br />
I had appealed for the change because the last time I spoke with BCBS they said that the GHP is not routinely covered with physicals and is not deemed medically necessary as a preventative test, and can only be covered if it is diagnostic. This is the opposite of what Andrea at BCBS told me in June--she told me it would be covered under my preventative care if it were coded correctly--but whatever. They change their story every time I talk to them.<br />
<br />
<br />
My rheumatologist (KS, NP) wanted the same panel run, and I was (ironically) trying to save money by only running it once and sharing the results between the two doctors. Dr. B told me that it would be covered as part of my preventative care (in full) so I thought it would be advantageous to have that particular test run through her and shared with KS, rather than the other way around. I filled out a bunch of paperwork to be sure that KS would get the results, but I am not sure whether she ever did, and she had not received them by the time of my appointment with her, and she was annoyed about that, and although she maintained her composure and was polite, it was an uncomfortable experience for me.<br />
<br />
Yes. Apparently this was not the advantageous way to go. At all.<br />
<br />
<br />
...Even though I was assessed an extra charge for the actual physical as well, because during the appointment we talked about lupus and reflux, according to the insurance company, who was looking at the diagnosis line on the paperwork.<br />
<br />
<br />
So I asked Dr. B (submitted an appeal) to change the code on the GHP to diagnostic and connect it to the lupus so I could at least get it covered at 80%. Heck. I'm already paying $127 for uttering the word lupus in her stinking office. Dr. B says that changing the code would be unethical, reports her nurse. Dr. B says we only discussed reflux and not lupus.<br />
<br />
<br />
I finally lost it and, practically in tears, told the nurse, "Look, I don't know what is covered and what is not covered, or how anything is coded, or what the codes are. Somebody told me it was coded as diagnostic and needed to be changed to preventative, and somebody else told me it was coded as preventative and needs to be changed to diagnostic, and meanwhile I never see anything. I'm helpless to do anything for myself. I'm flying blind. All I see is a bill for $305.00 that I was told would be covered, but now am being told is not, except it would have been covered at 80% if I had just had my rheumatologist run the lab instead of you. You know what? I have lupus. And you know what else? Lupus is triggered by stress. You know what gives me stress? Going to the doctor gives me stress. And getting bills gives me stress. Having the coverage of those bills denied by insurance, that gives me tons of stress. So I guess I will just stop going to the doctor, and maybe I'll just die. And then I won't have any stress any more."<br />
<br />
<br />
She was silent for a moment and then she said, "I can see why you would be upset. I wish I could do something to help you." But she didn't say it compassionately. She said it in that flat way that says, "It would be nice if I could do something to help you but I can't." Perhaps she was reading off a card topped with the heading, "What to say if the patient brings up death."<br />
<br />
So I replied to her, very brightly, "Yes, well apparently you can't help me. So. You have a good day now, but I probably won't. Good-bye." And then I hung up, because I was sick of her legalistic unhelpfulness.<br />
<br />
<br />
And now I feel guilty.<br />
<br />
<br />
I just hate this. Hate this. I cannot tell you how much I hate this.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-61669076539479851202016-04-05T23:56:00.000-04:002016-04-11T16:59:57.135-04:00Medical billsWith lupus, they want to test your blood and urine every 3-4 months.<br />
<br />
I've had microscopic blood in my urine for the last four tests or so now, maybe five or six, well over a year. They call it microscopic hematuria. They said I had to get it checked out. I put it off for months, but finally moved to have the tests done because of significant pain in my lower back. I had to have a cystoscopy and a kidney CT scan with an IV dye.<br />
<br />
There is still blood in my urine. The tests turned up no results. With my deductible and after insurance "negotiated down" the rate for the cystoscopy, I owed something like $800 for that.<br />
<br />
But the CT scan. Oh the CT scan. The insurance denied the CT scan. So I have a bill for $7550.15 staring me in the face. That would be $7550.15 that insurance refuses even to apply to my deductible. Just a pure, straight $7550.15 out of my pocket.<br />
<br />
They said, "This is not covered under the preventative care covered by
your plan." They said, "It was coded in with a code that indicates
that it is preventative care." <br />
<br />
Seriously. Who would ever, ever go to a urologist and have a kidney CT scan with dye for purely preventative reasons? How? When? Ever? Why does such a code even exist in the world?<br />
<br />
So I called the insurance company. They said, "They put it in under the code Z0000. That is a preventative code. They have to change it, but when they do, it should be covered."<br />
<br />
So I called the doctor's office. I told them what the insurance company said. The receptionist told me, "We got pre auth for you as a courtesy. This is not our responsibility. If their code doesn't work, it is not our problem. We put in a good code. You are still responsible for the bill." I tried to explain that she needed to find a different code. She ratcheted up her voice a notch and said, "You are responsible for your bill!"<br />
<br />
I tried emailing the doctor. A nurse called me back. She said, "No. We submitted the claim with the diagnosis of microscopic hematuria. They denied the claim because the test returned a negative result."<br />
<br />
My heart is pounding in my chest. I hope you can see some of my dilemmas here, because I don't want to dwell on this frustrating situation to the point of pointing out every ridiculous thing that is happening.<br />
<br />
The nurse told me she would try to change a code and resubmit the claim.<br />
<br />
I waited.<br />
<br />
Today I got another bill. Still looking at $7550.15.<br />
<br />
I called the insurance company again. The man told me that the code Z0000 is wrong. I replied, "Yes. I have been told that. Can you please tell me what the correct code would be?" He said, "No. I cannot tell you how to process a claim. It is against our policy to tell you how to process a claim." <i>Of course it is. Of course. </i>He was not unkind. He was not rude. But he was supremely unhelpful. I told him that the nurse had told me that the claim was refused because the test came back negative. He said, "I'm afraid she is giving you bad information. That is not correct."<br />
<br />
I called the medical billing customer service. The lady there was nice and told me, "Oh yes. We've been having a lot of trouble with those Z codes. The insurance companies don't like them. I'll put a note on your bill." <br />
<br />
I have faith. There is a God in heaven and He loves me. This will eventually be worked out. Somebody, some day, will find and enter the correct code. The insurance company will negotiate down the charge, and we will pay most of the negotiated bill, but we may reach the end of our deductible, so the last $432 or so might be covered at 80%, which is what our plan covers after deductible. I believe that this will happen and that it will eventually be mostly okay.<br />
<br />
But.<br />
<br />
I am not going to have any more tests. I am just going to wait until my body is rotting and decomposing and then I will ask for palliative care, pain killers.<br />
<br />
I will not have any more tests, because I sincerely believe that the stress of the tests and the exceedingly great stress of trying to deal with insurance and billing after the tests, is certain to shorten my life on its own. One of the keys to dealing with lupus is to reduce stress. I can reduce my stress a lot if I have less medical tests, and especially less medical bills.<br />
<br />
If only I didn't have to go to the doctor to get my hydroxychloroquine prescription. Because every time I go, they order more tests. I could lie and say I feel fine. I did that once, in the past, before the lupus was diagnosed. I just went in and lied, and it worked great--a wonderful respite from testing!--until I got too sick to function. You see, if you lie and say you feel fine, they won't give you your medicine.<br />
<br />
I'll go back to the hospital when it's time for morphine.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-11252407775557090532016-02-10T12:34:00.002-05:002016-02-10T12:34:17.537-05:00Trucking on with lupusFinally I had the cystoscopy and the kidney CT scan done. It's a relief to have them over with.<br />
<br />
I don't like the IV injection of dye that goes with the CT scan. It's a gross sensation, and my kidneys hurt for a couple of days afterwards. I'd not had that pain before, and wasn't expecting it. I was afraid it might mean that there was something wrong, but it didn't. Everything was fine. I guess having some pain like that helps you be extra grateful for a report of good results, and assuages the irritation of having to pay for a test that probably could have been skipped.<br />
<br />
I hate cystoscopies. But this one was fast, over so quickly, I almost wondered if the doctor could have seen what he needed to see. I am not complaining, as long as I don't have to go back. He said it looked good. He said that the kidneys are a filter, and as we age, filters have some backwash, and microscopic blood in my urine is no big deal. This is not quite as comforting to me as it probably ought to be, but it is what it is.<br />
<br />
So the next thing to work on will be my eyes, which are troubling me. I put this off because I needed to get through the urology stuff, and also because I think I might have a routine ophthalmology appointment coming up, which would enable me not to have to worry about whether it is authorized by insurance.<br />
<br />
In the middle of this, I'm still trying to get this house sort of decorated, or at least undoing some of the decorating that was here and is not according to my style.<br />
<br />
I need to call a contractor to discuss tiling some bathroom floors.<br />
<br />
Our master bathroom has a very cheap vinyl plank flooring right now, that Shawn and I put in when we tore out the carpet, as a stop-gap until we could figure out what to do. Confession: it isn't very pretty, but I like it. It's comfortable. I know how frigid tile is going to be, once it is installed. I am totally conflicted about this. Here we are in this pretty-nice house, with a totally campy bathroom floor, and because comfort always trumps aesthetics for me, I am at a total loss to make a decision.<br />
<br />
I also have paint swatches all over the kitchen table. The peachy beige in the main front hall is just not right. Yet, I don't think I really care enough to change it. I don't like it, but I don't really care. It is so not important to me. And yet, I think, if we have to sell this house, we will have to fix that color. And then I think, if we are going to eventually need to invest in fixing it, it would be nice to fix it in time to enjoy it. But then again, I don't care enough to make a decision and move forward.<br />
<br />
And, of course, there is balancing medical bills with home improvement bills. Medical bills always win, unless I can get out of the tests in the first place. <br />
<br />
Sometimes I think I am going blind, and I wonder how I will feel about home decorating when I can't see anything at all.<br />
<br />
It looks like we might get to go to the Redwood Forests this summer, sometime. Shawn used to say he didn't want to take me because he feared that once I'd satisfied that heart's desire, I'd just up and die on him. I'll try not to.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-26892523542219372722015-12-14T20:56:00.001-05:002015-12-14T21:02:47.940-05:00A bad daySometimes lupus gives you a bad day.<br />
<br />
My bad day started sometime yesterday; I'm not sure when. My ears started to hurt, and my glands swelled up. I was trying to get some things done, but twenty minute tasks stretched into two hours or more. I functioned patiently for a long time, just rolling with my mistakes without tensing up and getting angry, plugging along, doing things slowly, stupidly, in the wrong order, but plugging along.<br />
<br />
Until it got to be 11 p.m. At 11 p.m -- when I realized how late it was, and how little I had accomplished -- I fell apart.<br />
<br />
Today should have been a good day. I had fun things to do, friends to be with.<br />
<br />
But I felt awful. For one thing, I got hardly any sleep last night. I fell into bed, exhausted, at 12:09, because that's just how long it takes me to get ready for bed when I don't realize it's late until 11 p.m. I thought I would fall right to sleep, because of how tired I was, but I lay there struggling to turn my mind off until 1:44, at which point I got up to use the bathroom. I got up two more times to use the bathroom, finally fell asleep, woke up what seemed like 15 minutes later, and realized it was daylight. Sigh. Fatigue settled in like a sort of noxious pain. I felt awful. And when I feel awful, I am cross. Crabby. Miserable. I try to hold it in, but I feel it coming out. A word. A tone of voice. A snap. Then I feel ashamed and self-conscious and guilty.<br />
<br />
It was a dark, rainy day. A Syracuse sort of day. We don't have that many days like this here in the midwest, but today our weather got me down, too. Also, I always seem to feel worse when there are storm clouds in the sky and specks of water or snow in the air.<br />
<br />
I soldiered through a bunch of Christmas shopping. Drove home feeling the dreaded, "Ooooops. Pushed too long and hard." Tingling chills on my lower back suggest the onset of a low grade fever, never a good sign.<br />
<br />
Shawn came home, and we ate (I'd already had to go ahead and eat some food before he got here, because of how weak I felt). Then I looked through the mail and opened a medical bill for approximately $675. And I wept. It was $1114 before insurance "adjusted" it. I should be thankful, right? But I wasn't thankful. I was distraught.<br />
<br />
You know what I hate the most about lupus? I hate the bills. I'm always having to go to the doctor, and the doctor orders tests. The doctor tells me I have to see more doctors, and have more tests. Currently I am avoiding going to the urologist for a CT scan of my kidneys and a cystoscopy. I am supposed to have these done because my regular lupus blood tests have shown blood in my urine (microscopic, invisible amounts) for nearly a year now, and it isn't going away. Usually this doesn't bother me. Usually I don't have pain. I take cranberry tablets and drink a lot of fluids. I don't want to go to the doctor for this.<br />
<br />
I do not want to go to these appointments and have these tests. There are only two possible outcomes from these tests, and neither is any good.<br />
<br />
1. We could find that I have a serious problem that needs expensive treatment. Boooo.<br />
2. We could take the time, undergo the unpleasant procedures, and pay the thousands of dollars they charge for doing the procedures, and then find out that everything is fine and we could have just as well saved the time, money and unpleasantness.<br />
<br />
I am going to try to wrap about five gifts, and then I am going to try to go to bed early.<br />
<br />
I will not try to figure out what to do with this bill until tomorrow.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-16394373431645855202015-10-08T13:14:00.000-04:002015-10-08T13:14:49.689-04:00Lupus lossesWhile I know there are people who suffer greatly with lupus, I am not at that point yet.<br />
<br />
I suffer a little bit. I ache, and I have very limited energy. I can't do a lot of the things I wish I could do. My eyes bother me, and I get headaches, sometimes even nausea when I try to read. That's hard, because reading has always been one of my great joys in life.<br />
<br />
Travel is difficult for me, and that's hard, because I live quite far from my loved ones. It's always been hard to live far from family, but it seems even harder now, as I am still far from my parents and brother and sister, but now I am also far from my second family, my children who had come to be my precious family, my comfort and my joy. Now they are distant, too. And distance is formidable when you have lupus. Even when you can suck it up and put yourself through the ordeal of travel, you are not yourself once you get there, and you can't enter into the moment as you wish you could.<br />
<br />
Additionally, lupus is a very costly disease. The expense is more overwhelming than the actual symptoms, most of the time.<br />
<br />
Recently, my husband's company was acquired, and in the acquisition, we got different health insurance, and I can't find any confirmation anywhere that my rheumatologist is a participating provider with the new plan. I've combed the computer data bases, and it looks like she is not. I've called both her office and the insurance people numerous times, but the doctor's office insists that the insurance company is the one who needs to tell me whether the doctor participates with them, and the insurance company insists that it is the doctor who should know which plans she participates with. It is all Blue Cross Blue Shield, but they have so many different plans that the doctors don't know which ones they are participating with, and apparently BCBS doesn't know itself.<br />
<br />
So. I have costly panels of lab tests run every 3-4 months, and costly specialist visits to follow up, and costly referrals to other specialists for more costly tests, but nothing makes me feel better. Nothing fixes me. At one appointment, the rheumatologist asked if I'd been having any new pains. I'd been going through a time of waking up in the middle of the night from shooting, horrific pains in my big toes. I told her about it. She looked at me with big, woeful eyes, and--in all seriousness--told me, "If that continues to happen, you can take some ibuprofen." I just sat there, stunned. $240 for an office visit, and this "specialist" is going to tell me to take some ibuprofen for pain?<br />
<br />
Not going to lie. Lupus makes me depressed. Between the symptoms and the cost of "treatment" (and I use the term treatment very lightly, because I don't think I am really being treated, only monitored), I can rarely travel to see my kids, and my kids are my joy in life. So I feel that lupus is robbing me of joy.<br />
<br />
Additionally, stress causes lupus to worsen. This is scientific, not just in my head. Lupus is an auto-immune disease. That means that my immune system is impaired. Rather than fighting off viruses and bacteria that cause disease, my immune system attacks my body and makes me hurt. Heightened cortisol levels stimulate the immune system to act up and attack even more. Stress causes heightened cortisol levels. Therefore, stress is bad for lupus. But I can't control stress. Anguish over a wayward child, disappointment over not being able to see a distant child, fear of medical tests and medical bills, all these things come into my life and make my body hurt. I can get very discouraged.<br />
<br />
I take each day as it comes, because what else can you do? Fighting it adds to the stress. I can choose not to fight. I can choose to take it to Jesus and cry a little, and then dry my tears and trust that He is with me now, and He has a better life in store for me in eternity. I'm getting a new body! Hallelujah! I'll be able to run through fields of daisies for miles, breathing deep and moving my arms and legs. I'll be able to leap and dance and sing and see beauty and bask in the presence of God with no more pain. I have this to look forward to.<br />
<br />
In the meantime, I pray a lot, as much as I can. I try to eat well--even though food is often repugnant to me. I eat as well as I can. No gluten because it triggers inflammation. Not too much sugar. As much salad as I can stand. I try to eat well. I try to get exercise, gentle walks, every day. I try to rest.<br />
<br />
As long as I baby myself, I do pretty well. It is an awful limitation, an embarrassment to be so weak. I envy people who can entertain and go on trips and decorate their homes and dig in their gardens and handle all manner of projects. I'm doing well if I can figure out how to get to the grocery store along with going to work 12 hours in a week. I'm thankful when I fold the laundry or wash the dishes. A tidy kitchen and clean sheets, that's a blessing. "House beautiful" is another dream I've had to die to.<br />
<br />
Dreams I've lost include a tight and loving extended family and a beautiful, full-of-laughter, organized, welcoming home. That's really all I ever wanted, and I do have pieces of them, just not the picture I always dreamed of and longed for. I figure Jesus wants me to die to this, and it is such a bitter pill to swallow. <br />
<br />
I know that I should be happy and content with Jesus alone. Jesus should be all I need. Jesus is more than enough. Jesus died for me, gave His blood to pay the price for my sin. Yet, I continue to sin by being discontented and longing for idols of my heart, resenting the things that keep me from them.<br />
<br />
Why can't I be grateful for the great salvation that is mine in Christ Jesus? What is wrong with me?Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-68953897256836506262015-05-01T17:31:00.000-04:002015-05-01T17:31:04.915-04:00Happy May Day!I'd like to get some seeds into the ground, but I am exhausted right now. Guess what I did? I got up and did a few morning routine things, showered, emptied the dishwasher, folded some clothes. Then I went out for an early lunch with a friend. After lunch, I drove to town and took my son to the grocery store, took him back to his place, and then came home and put my groceries away. And then I walked the dog.<br />
<br />
Now I am bushed. Lupus makes me feel so stupid. I mean seriously, who could be bushed from that?<br />
<br />
I guess this is my complain-y blog. I try to keep the whining off my other blog these days.<br />
<br />
It is beautiful, warm sunshiney day, probably 75 degrees. I want to be out enjoying it! The colors outside my windows are vibrant. I want to plant my flowers. I want to relish the first of May!<br />
<br />
My neck went out sometime earlier this week. I'm not sure when or why. A cold breeze? Sleeping in a different position because Shawn is out of town? Last night I plastered myself up with a host of Salonpas patches. They are surprisingly helpful. Today I took ibuprofen; that helps too. But the key word is: <i>helps</i>. There are things that help, but there doesn't seem to be anything that cures.<br />
<br />
After the grocery store, my grocery bags spilled all over in the back of the van. This made me irrationally angry, I suppose because I had to climb into the back of the van and crawl around, reaching for all the things that had rolled hither and yon, and when you have lupus and your neck is out, this is quite painful. Pain makes me very edgy, and in this instance it made me mad.<br />
<br />
I was mad because the back seats in the van were folded down and the two bucket seats were installed in the van, and I did not know why. Folding down the back seats creates a wide, flat area in which things slide and roll profusely. Usually we keep one of the bucket seats out of the van, so the dog crate has a spot to sit in. And then we put the back seats up so there is a low space behind them, a couple of hole-like spaces, into which one can place grocery bags without fear that they will later ricochet around the interior of the vehicle. This is how I like the van, and for whatever reason, this is not how the van was today, and being in pain and suffering the consequences of the different arrangement, I got mad.<br />
<br />
Nobody configured the van this way in order to hurt me. I can't remember what we did last weekend; it's quite possible that we needed to move something that required this configuration. Just because I had a little pain, it doesn't mean that anybody is out to get me. I know this is true, but sometimes it helps to codify it, to remind myself, because there is something visceral about pain that makes the subconscious human psyche feel persecuted.<br />
<br />
Getting mad also makes you tired, drains your energy. I have learned at least this much: I should avoid getting angry as much as possible, because being angry makes me tired, increases my pain, and generally wears me out right along with whatever it was that was wearing me out in the first place and inciting me to anger. It's a wicked vicious cycle. Historically, I have been very bad about identifying my pain and using strategies to cope with it. Historically, I have denied my pain until I turned into an angry, screaming lunatic or a desperate, weeping fool. This needs to change, and I am learning to change it.<br />
<br />
So I am using this blog to vent a little, to analyze my feelings and to comfort myself. I will calmly and rationally explain my situation with the van to my husband when he gets home from LA. I will ask him if he would please help me get the configuration of the van back to the way it was. He is a kind and reasonable man, and I have no cause to think that he will treat my request with disrespect, as long as I don't do something stupid, like blame and accuse him for something that is not his fault. <br />
<br />
It is over now, and it will be okay in the end.<br />
<br />
Resting while writing has calmed me. It was a profitable endeavor.<br />
<br />
Perhaps I will even plant some seeds now. I was also hoping to do some baking with rhubarb, but that might just have to wait, and that's okay, too.<br />
<br />
I am going to have a happy May Day. It is May first, and it is glorious.<br />
<br />
Lupus can knock me around a little, but I am learning how to prevent it from getting the better of me.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-22041591782648597382015-02-20T13:21:00.001-05:002015-02-20T13:21:44.550-05:00Lupus and the flu vaccineLupus is a problem of the immune system.<br />
<br />
Vaccines, sometimes also called immunizations, are formulated to stimulate the immune system to produce antibodies to fight a specific disease.<br />
<br />
They discovered immunizations because back when everybody was dying of smallpox, the milk maids were not getting sick and dying along with the rest of the population. The milk maids commonly caught cowpox from their cows, and somebody finally noticed that people who had gone through cowpox did not get smallpox. When the body fought through cowpox (a relatively mild disease), something happened to its internal chemistry that made it able to fend off smallpox afterwards.<br />
<br />
Extrapolating, scientists developed vaccines (immunizations) for many diseases. Using very small amounts of toxins and introducing them to the bloodstream through shots, they could stimulate the body to build up defenses against dangerous viruses.<br />
<br />
So you see: vaccines, which I think are actually a very good thing and a very good idea, <i>generally</i>, are a way of working on the body's immune system, stimulating it to go to work and build up defenses against diseases.<br />
<br />
However, since lupus is a condition that stems from a broken and malfunctioning immune system, it is my theory that immunizations for people with lupus may be a bad idea.<br />
<br />
In lupus, the immune system has gone wild. Rather than attacking the things that are actually harmful to the body, the immune system of a person with lupus attacks various parts of the body itself. You do not know what it is going to attack. It may attack the joints, the blood, the heart, the kidneys, the eyes, the skin . . . the list goes on. It is a rogue band of warriors, armed and dangerous and out to destroy whatever is unfortunate enough to cross their path.<br />
<br />
In my experience, the best way to keep my lupus quiet is to avoid stimulating the immune system. Therefore, I think it would make sense not to get immunizations, especially the flu shot, for fear of waking up the immune system and causing a lupus flare. <br />
<br />
Before I was diagnosed with lupus, I had the flu shot twice in my life. Both times, I had a mild reaction following the shot (low fever and slight achiness). Both of those years, I also contracted the flu. I did not contract the flu immediately following the shot. Although I do not remember exactly, I know I had the shot in the fall, probably October, and I know for certain that once I was sick with the flu over Valentine's Day, and I think the other time I had it in March. So I am not saying that the flu shot gave me the flu, I am just saying that I got the flu both years when I got the flu shot. The flu shot did not protect me from getting the flu. Of course, they say that it only protects against a few varieties of the flu, and defend it by telling you that you were just unlucky enough to contract one of the strains that it doesn't guard against, <i>however . . .</i><br />
<br />
<i>Outside of those two years</i> <i>when I got the flu shot and also contracted the flu, I have only had the flu one other time in my life</i>. Now that I am 49, statistically speaking I can say this: I contracted the flu in 100% of the years when I was immunized for the flu, while I contracted the flu in 2.1% of the years when I was not immunized for the flu. That's the math.<br />
<br />
Since having the flu--or another virus--is a major trigger for lupus flares, it is my goal to have the flu absolutely as infrequently as possible. For me, that means declining the flu shot. I think that even the low-level reaction that I got after each flu shot would be likely to plunge me into a lupus flare at this point in my life.<br />
<br />
As an alternative to the flu shot, I take 4000 IU of vitamin D3, daily. Since I have been taking D3, my resistance to viruses has been little short of miraculous. I contract respiratory viruses very infrequently, and when I do get them, I am able to fight them off in 2-3 days, even when they come on suddenly and with severe symptoms.<br />
<br />
My key for stemming the tide of lupus is to tiptoe around my immune system and do everything I can to avoid waking it up. "Let sleeping dogs lie," as the saying goes, or, since we're talking about lupus, "Let sleeping wolves lie."<br />
<br />
I am not a medical professional of any kind. I only write about my own experience, what seems to work for me, and what seems to make sense to me. I do not have a doctor I can trust to take care of my lupus (my PCP is better than any rheumatologist I've found, but she won't prescribe hydroxychloroquine), but if you are blessed with a trustworthy doctor, be sure to speak with him/her before you make any changes to your routine.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-83859517972986530132014-09-26T20:25:00.003-04:002014-09-26T20:25:44.150-04:00Links: Consider these when you have lupusDo you have "<a href="http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/">leaky gut</a>"?<br />
<br />
Here someone was supposedly saved by a <a href="https://www.drmcdougall.com/health/education/health-science/stars/stars-written/mayra/">vegetarian</a> diet. I don't know how you can cut out so many foods and survive. Seriously. I already can't have any gluten, which means no more bread, and not even my delicious beef-barley soup. If I cut out all meat, too, I am going to starve to death.<br />
<br />
Here's more about the l<a href="http://lupusandhumor.blogspot.com/2012/01/leaky-gut.html">eaky gut theory</a>.<br />
<br />
And <a href="http://womensbesthealth.com/dr.-becks-published-articles/autoimmune-disease-and-the-leaky-gut-connection.html">more</a>.<br />
<br />
And <a href="http://www.carolynrossmd.com/1024/ever-heard-of-leaky-gut-syndrome/">even more</a>.<br />
<br />
I think I am going to have to consider doing the <a href="http://www.gapsdiet.com/Home_Page.html">GAPS</a> diet.<br />
<br />
This will be hard.<br />
<br />
Augh.<br />
<br />
Some people say drink tea, some say absolutely no caffeine, including tea. Some say bone broth is the answer, others say absolutely no meat products. Some say no dairy, others say lots of kefir. <br />
<br />
I am so confused.<br />
<br />
Pretty much all of them say to find organic, free-range, grass-fed products. Good grief. I live in Monsanto land. There are GMOs in my household dust. I don't even have access to organic air, so can I justify impoverishing myself on "organic" meats and vegetables?<br />
<br />
Well, we're all going to die some day. It's okay. This world was not created for eternity, but God has placed eternity in our souls. We look forward to a better place, and when we get there, there will be no more lupus. Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-88771564288533966442014-09-25T11:27:00.001-04:002014-09-25T11:27:36.428-04:00Good lupus doctors are hard to findThese days, doctors specialize. Every doctor has a specialty, it seems. The ones without specialties (family practice, in particular) don't like to touch anything that would be construed as in the area of a specialist. They refer out. Liability, I guess.<br />
<br />
The problem is when you don't fit neatly into any specialist's box.<br />
<br />
I just went through the worst lupus flare of my life. I knew it was a lupus flare. Come on. This is my body. I know when I have a virus, and when I have lupus. So, to reiterate, I knew it was a lupus flare. The doctor at "convenient care" did not question whether it was lupus, and she treated me for lupus. And the treatment mitigated the problem. My lupus doctor (rheumatologist) was unreachable on the Monday after the weekend I went to "convenient care." In fact, she and her office were unreachable for the entire week after I'd gone to "convenient care." Fortunately, I somehow had the presence of mind to see my PCP (family practice), and she changed my prednisone from a burst to a taper. She looked me over quite closely, and showed me pictures on the internet that matched my rash, and was quite convinced that what I was experiencing was, indeed, a lupus flare.<br />
<br />
When I finally saw my rheumatologist, 2.5 weeks after the fact, when all my symptoms had cleared up and gone away and she could finally fit me into her schedule, she said, and I quote, "I am not convinced that what you experienced was lupus."<br />
<br />
I guess this is her attempt to pass the buck for not having been able to see me. I had diarrhea (along with everything else), ergo it was not lupus, as diarrhea is not a typical lupus symptom, never mind that it shows up on most lists of lupus symptoms that I've seen. Never mind that all my other symptoms were typical lupus symptoms, never mind that it started as a typical (for me) lupus flare and then progressed into something worse than I'd ever before experienced.<br />
<br />
Never mind.<br />
<br />
She also told me that she's moving to another state in a few months, to be closer to family.<br />
<br />
She ordered another expensive round of lab work for me. We pay out of pocket for this. It generally ranges in cost from $1800-$2400. I just had it done in July. Labs are very important, she says. We need baselines. Now that I am "good," and off prednisone, we need another baseline in the system so we have something to compare against the next time I think I am flaring.<br />
<br />
I came home without getting the labwork done. I think I will start looking for a different doctor before this one actually moves away.<br />
<br />
Just because.<br />
<br />
When you don't fit neatly into the box that they define as their specialty, they just <a href="http://ruthmem.blogspot.com/2011/07/attributes-of-god-s.html">pass the buck</a>. You aren't suffering from what they treat; they are not responsible to treat you.<br />
<br />
Specialists. Bah.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-68945532429641611572014-09-12T16:53:00.000-04:002014-09-17T12:54:08.552-04:00What I understand about how lupus worksLupus is an auto-immune disease.<br />
<br />
It is a problem with your immune system.<br />
<br />
Your immune system is there to help you fight off infection and disease. It is a good thing, your body's natural defense mechanism.<br />
<br />
Not being a scientist or a medical professional, I do not understand the scientific mechanisms for how the immune system works, so this post will not be written in fact; it will be written in allegory. And I might be all wrong. But it might also help you (or someone else) understand a little bit more about lupus.<br />
<br />
<u><b>Here's a one-two-three look at ways the immune system can behave in your body:</b></u><br />
<br />
<i><b>(1) Infections and illnesses</b></i><br />
<br />
The immune system can guard your body against germs (viruses and bacteria) that make you sick. For our purposes, we are going be unscientific and call these bad guys germs: they're the stuff you don't want in your body. We are discussing germs first, because germs are universally bad. Some people are more susceptible to them than others, but germs are bad for everybody.<br />
<br />
When germs get in, your immune system kicks into action to throw them back out, or to kill them on the inside.<br />
<br />
A fever is the immune system's reaction to try to "cook" germs out of our bodies, to raise the body's temperature to a point where it is hostile to the germs' survival, so they will die.<br />
<br />
Coughs, sneezes, runny noses and the flowing of phlegm are another tactic the immune system uses to try to wash germs out of our membranes. Juicy secretions form to carry toxins out of the body.<br />
<br />
Vomiting and diarrhea are, likewise, the body's attempt to rid itself of toxins.<br />
<br />
These immune-system responses are often misunderstood, and people believe that they are the problem, the illness itself. Actually, they are signs that the body is trying to fight off the illness. People often strive to shut down immune-system responses because they can be uncomfortable. However, the art of medicine lies partly in knowing when to shut them down, and when to allow them to do their work. However, there can often come a point in an illness where the immune-system responses begin to do more harm than good, as when the phlegm of a cold sets into the lungs and becomes an infection: pneumonia.<br />
<br />
It's all interconnected and very complicated. But at the end of the day, our immune systems are in place to help us fight off illnesses.<br />
<br />
<i><b>(2) Allergies</b></i><br />
<br />
When people have allergies, their immune systems react against things called "allergens." Unlike the (~very scientific~) germs we discussed above, allergens are not necessarily bad for all people. They can be things like pet dander, plant pollen, dust or grass, or even things like milk, eggs, latex, seafood or certain types of medicine. What is an allergen for one person could pose no problem at all for another person, and might even be good for someone else.<br />
<br />
However, when you have a reaction to an allergen, your immune system is identifying it as something bad (like a germ) and attacking it. Hence, you get symptoms. Ragweed pollen makes you sneeze. Latex makes you break out in a rash. Shrimp makes you vomit. In order to avoid the symptoms, you try to avoid the allergens.<br />
<br />
Allergies are a misappropriation of the immune system. It attacks inappropriately against a substance that really ought not be a problem. Unfortunately, the immune-system response can be very acute and unpleasant, so the two ways to guard against allergy symptoms are to avoid the allergen, or to somehow shut down or slow down the immune-system response.<br />
<br />
<i><b>(3) Lupus</b></i><br />
<br />
In lupus, the immune system is also acting up, similar to the way it does with an allergy. However, unlike with an allergy, there is no allergen. In lupus, the immune system has decided that the body (or one of the body's systems) is the enemy to obliterate. Yes, the immune system goes on attack against the very body that it is supposed to protect.<br />
<br />
You know how you can avoid allergic reactions by avoiding allergens? You can't do that with lupus. You have only one line of defense once a flare begins: shut down the immune system. (Incidentally, people used to die rather quickly and regularly from lupus before it was understood how to disarm the body's immune system.)<br />
<br />
This is why it is so very important, in lupus, to try to keep things from flaring. You don't want to attract the attention of that immune system. It's a rogue immune system. Imagine a well trained group of soldiers, and then imagine that they have been destroyed and replaced by a pack of wild wolves. That's sort of what has happened to the immune system of a person with lupus (maybe that's why they call it lupus). When something starts to go, those wolves are on it as though they are chasing down a wounded deer. As the immune system rages on, it produces symptoms like joint pain, fever, nausea, vomiting, diarrhea, tightness of the chest, difficulty breathing, swollen glands, sore throat, cough, rash, itching, hair loss, and much more. The best we can do at this point is try to shoot the immune system with a hypothetical stun-gun and put it to sleep for a few days, hoping that in the meantime the symptoms will abate (the proverbial wounded deer washes in the stream and finds a clean, safe bed to rest in), so that when the immune system wakes up again, it will be groggy, forget about its prey, and continue to cease and desist in its attack for awhile.<br />
<br />
Obviously we can't live our lives with our immune systems shut off. Well, not for very long at any rate. Treatment for lupus involves low doses of medications that lightly suppress the immune system (like plaquenil), coupled with more complete immune-system blockers (like prednisone) for when things get really bad.<br />
<br />
A cure for lupus would involve figuring our how to re-regulate the immune system so it would respond to appropriate stimuli and leave the poor body alone.<br />
<br />
In the meantime, please be understanding of your friends with lupus if they do things that seem weird (to you) in order to avoid a flare. Believe me. They have been through some pain and discomfort. They aren't trying to be difficult. They'd like to eat the things you eat, go the places you go and do the things you do, more than anything.<br />
<br />
Here are some things you should encourage (and never mock) in your lupus buddies:<br />
<br />
Early bedtimes<br />
Gluten free diets<br />
Anti-inflammatory diets<br />
Gentle exercise<br />
Avoidance of extreme hot or extreme cold<br />
Stress reduction<br />
Gentle lighting<br />
Gentle sound levels<br />
Simple schedules<br />
Limited outings<br />
Avoiding contact with lots of people, especially if some may be ill <br />
Hot tea <br />
Lots of love and understandingRuthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-33852425697810693772014-09-08T19:00:00.001-04:002014-09-08T22:37:44.037-04:00My first major lupus flare... or is it measles?If you read my <a href="http://sleepatpeace.blogspot.com/2014/09/lupus-and-gluten.html">last post</a> (and I believe that stats showed that one person did, although I never know whether they are counting me by mistake)-- you already know that I was headed into something bad.<br />
<br />
Yes. I thought it was bad on Tuesday. I'd gone to a Bible Study Fellowship meeting, followed by lunch with some of the women (I was very good and had a self-designed salad with safe ingredients). After lunch, I picked Jon up at school, and on our way home, I began a headache. Headaches are a pretty normal lupus symptom for me; I didn't think too much of it, just spent a lot of time down on the sofa, feeling guilty for not making dinner. Shawn came home and cooked up some GF spaghetti for us.<br />
<br />
I kept telling Shawn, "My skin is all sore and tender. And I keep feeling chilled. I think I have a fever."<br />
<br />
Finally he said to me, "Why don't you take your temperature?" I whimpered and whined and said I didn't even know where the thermometer was, and I didn't feel good enough to look for it. A few minutes later, Shawn appeared in the kitchen, thermometer in hand. We checked my temp and it was 99.6. Now, for me that is actually significant, because my normal, baseline temperature runs 97.5.<br />
<br />
"No wonder you don't feel good," Shawn said. I went to bed and tried to sleep it off.<br />
<br />
That was Tuesday.<br />
<br />
On Wednesday I had to take Schubert to the vet at 9 a.m. for a follow up. It was hard to get going, and it was a 30 minute drive, but in the end we were only 5 minutes late. However, by the time we got home I was utterly wiped out. We were still low on food... I think we've been low on food since we got back from our trip to visit Shawn's parents. But I opted out of heading back out to do major shopping, and looked in the refrigerator to see what I could make with what we had. Using fresh tomatoes from our neighbor's garden and some frozen ground beef, I was able to put together a nice pot of chili. I also baked coconut flour cupcakes. Those were my three accomplishments on Wednesday: vet, chili, GF cupcakes. Then I was shot. And I still had a fever. I think it was 100.4. I was able to get down a partial bowl of the chili for dinner.<br />
<br />
On Thursday, I decided that I seriously needed to lick this thing. By Thursday, food was looking bad to me. I was having trouble swallowing more than a couple of bites of anything. I drank tea and stayed in bed most of the day. I accomplished exactly nothing. My throat was starting to hurt a little bit; I thought perhaps this was because I'd been forgetting to take my Claritin since all this started. I tried taking a Claritin. My skin was still tender; my whole body was tender. The fever was rising slowly. At the end of the day, after intentionally resting all day, I didn't feel better. I felt worse.<br />
<br />
Friday morning we had eye appointments, so I got up and got ready to go, still feverish. Upon returning home after the optometrist, I was bushed. I knew I should run Schubert over to the groomer for a medicated allergy bath, especially since I actually had the car, but I just lay on the futon on the sunporch, feeling guilty for not going.<br />
<br />
The doorbell rang. What? It was the piano tuner. Somehow I had forgotten, but at least I felt better about not taking Schu to the groomer. The piano needs to be re-somethinged (realigned?). I was not surprised, and I was quite happy that it can be fixed; I'd thought we'd permanently damaged it in the move. In chatting with the piano tuner, I learned that his wife also has lupus, and that in the last few years, hers has advanced alarmingly to where her internal organs are all hardening and she has to make bi-weekly pilgrimages to Northwestern University for infusions. Maybe that wasn't exactly what I needed to hear as I wandered lethargically from sofa to futon to bed with my first serious lupus fever.<br />
<br />
I don't remember the earlier NSAIDs (non steroidal anti inflammatory drugs) I'd taken for the fever on Friday, but I took two ibuprofen at 8 p.m., because I couldn't wait until bedtime, and I took two more at 10:30 p.m., and after I let my mouth rest from the cooling effect of the water I used to swallow the second dose, I took my temperature and it was 101.4. Now, that isn't what you would normally call an alarmingly high temperature, but when you consider that this was after 800 mg of ibuprofen (albeit staggered), after four days of rising fever, after a drink of water, it is higher than it sounds.<br />
<br />
Sometime on Friday afternoon, I had called my rheumatologist, but she wasn't in. They told me to go to Convenient Care and get prednisone... as long as I didn't have an infection. I hate prednisone. I asked if I could try to ride out the weekend. They said sure.<br />
<br />
Friday night was awful. At 2 a.m. I got up with diarrhea. At 3 a.m. I got up with diarrhea, vomited (almost nothing, as I was virtually empty after not being able to eat), and prayed for mercy from violent dry heaves. At 4 a.m. I had another bout of diarrhea, but no dry heaves. <br />
<br />
Saturday is a blur. I spent the morning in bed. Shawn mowed. Jonathan cut up a juicy, ripe cantaloupe, and I was able to eat some of it. I willed myself to be better. Willed. We needed some food in the house. We were out of meat, eggs, bread (for the guys), everything. We needed juice, yogurt, applesauce, things I could stomach.<br />
<br />
We decided to go to the southern suburban Walmart (as opposed to the northern urban Walmart). It's a longer drive for a cleaner, better stocked store, where we could get most all the things we needed at one place. Shawn also wanted to fill his new glasses prescription.<br />
<br />
We forgot about the glasses until the end of the trip. Then, carts laden with bags of meat and dairy, we rolled up to "Vision" and he started to look. About halfway through, my body gave out. I sat down and laid my head on my arms on the optician's desk. I didn't care about anything. I told myself, "If you are sick, you can rest here while he gets this done just as well as you can rest anywhere." Which is not perhaps strictly true, especially in the middle of diarrhea cramps, but it is a good thought to have when you need it.<br />
<br />
The rest of Saturday is a complete blur. On the way home from Walmart, I lay in the backseat of the car with my head on a somewhat suspect carblanket, sipping a sunwarmed bottle of water from a package that had lain on the car floor since our last trip. Later, Shawn gave me some of our new vanilla yogurt and applesauce in a square glass bowl for dinner. This is all I remember. I'd thought it would do me some good to get out. I'd thought wrong. My fever was 100-something. I think 100.8.<br />
<br />
Sunday, I did not go to church. I woke up with chest pains and a sick stomach. Although the thought of swallowing anything was repugnant, I finally willed myself to take one aspirin. That did help the pain, and did not seem to worsen the nausea after the initial swallow. I tried to sip water and tea, and worked on getting ready to go to Convenient Care, like they'd told me to do in the first place. It took me hours. I got into the shower, and the water was too hot. I turned it back. It was still too hot. I turned it back again. I still didn't feel comfortable. I looked down and thought, "My goodness, this water is making my legs get mottled!" Then I realized that my legs were not just mottled, I had a ferocious rash all over my whole body. By this point, I was dizzy, nauseated, starving hungry and dehydrated. My fever was hovering at 100.4. I stumbled out of the shower and lay naked and rashy on a towel on my bed, trying to get dry. I can't remember whether I was hot or shivering, but I know I felt sticky. I thought that perhaps I might die. I hoped I would have time to write a letter to each of my children before the end. <br />
<br />
I took a zippered, hooded sweatshirt and my favorite pillow to Convenient Care and stumbled towards the only spot in the waiting room that was a double rather than a single seat. Fortunately, the waiting room was mostly empty, so I didn't feel too greedy. Unfortunately, it was awkwardly close to another patron. Fortunately, I didn't care.<br />
<br />
We got in to see the doctor ridiculously fast. Or maybe I was unconscious during the wait. The intake nurse weighed me (I'd lost a few pounds) and took my temperature which came out as, ironically, 96. That had to be a mistake. Even for me with a baseline 97.5, there's no way that was right. And with my recent history and the way I'd been feeling that day, there's no way that was right. Then she read off the form in front of her, "On a scale of 1 to 10, how would you rate your pain today?" I was not in good condition. I probably was not filled with the Holy Spirit. I stuttered and tripped and hemmed and hawed and finally said, "That's too hard of a question. I have no idea how to rate my pain. I'm nauseated. Nausea skews everything. I'm so miserably nauseated I couldn't possibly tell you what my pain scale is." I think she wrote down a 2 in the end. I'm not sure if you always get your top-of-the line medical practitioners on Sunday at 1:30 p.m. Well, she was probably trying to do her best.<br />
<br />
The doctor asked me all the questions: Do you have chest pain? (yes) Well there probably isn't anything wrong with your heart. We can send you over for a chest x-ray if you want. (no) Do you have a sore throat? (yes) Any coughing (yes, just started) blah blah blah. It seemed to me that there were some reasons to think that I might have a flu bug, or even (based on the rash) the measles. The doctor gasped a little at the rash when she pushed up my shirt to listen to my heart. But in the end, this doctor, a small woman with distractingly white-rimmed glasses, seemed quite happy to call it lupus--not an infection or viral infection--and to put me on a "five day burst" of prednisone.<br />
<br />
She also gave me Zofran for the nausea. She gave me one right there in the office, and they kept an eye on me for 20 minutes (a miserable, frigid 20 minutes, during which I wrapped my aching ankles and feet in a towel I audaciously pulled out of a drawer under the examining table). I asked the doctor whether Zofran has any side effects. I had a bad feeling about constipation. I felt too stupid to ask the question though, since we'd just been discussing my watery diarrhea. Sure enough, since that one Zofran in the doctor's office, I haven't had any more diarrhea, or anything else, for that matter. Shawn says not to worry since my digestive system is still very empty. I worry a little, since I'm not really at a point to be pushing leafy greens.<br />
<br />
I am feeling better. Although, last night, my first night on prednisone, I woke up three times, soaked with sweat and had to change my pajamas each time. Drenched sleep shirts lined the edge of the garden tub in the morning. I should have changed the bed sheets when I changed my pajamas, but Shawn was in the bed. I laid out an absorbent towel over my damp sheets, and finished the night on that. This morning I had lots of laundry to do, which cheered me up after how unproductive I've been for days. It's good to feel better.<br />
<br />
When David heard that they'd given me Zofran, he said, "Buy prune juice!" As a result. I have found that prune juice, over ice, diluted with some club soda, is actually quite a palatable drink. Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com1tag:blogger.com,1999:blog-7564143829615844614.post-21033825207643535502014-09-02T18:39:00.000-04:002014-09-02T18:39:02.072-04:00Lupus and glutenShortly after we moved to IL, someone told me that, having lupus, I ought never to let gluten pass my lips again. Gluten is inflammatory, and lupus pain comes from inflammation.<br />
<br />
I figured that, in the scheme of things, going gluten-free was a relatively easy and inexpensive thing to try.<br />
<br />
So.<br />
<br />
I'm not sure the upshot of it all, but now I notice that I have far less pain when I stay off gluten, and loads of long-lasting, serious pain when I "cheat." For instance, I ate a piece of my son Jonathan's birthday cake 6 days ago. The day after, I was okay. I thought, "Hallelujah! Maybe I am okay now! Maybe I can go back to eating gluten!!" And then I was no longer okay. It began with a lot of aching and particularly a lot of pain in my lower back, pelvic area, hips and thighs. Today it has spread to my shoulders, neck and head; I have a bad headache.<br />
<br />
I am sick of being gluten free. I hate rice flour products. I don't mind rice so much, plain rice or brown rice, but things made of rice flour are pretty nasty.<br />
<br />
I told my husband the other day, "I just really miss nice, bland food that you can fill up on that isn't strong. Gentle food." Gentle food hurts me. Toast and egg noodles and crackers... they do me right in. So it is back to rolling my meat and cheese in romaine. Paleo wraps. Salad everything.<br />
<br />
I eat potatoes. And rice. I have found that oatmeal doesn't hurt me. I make some nice things out of coconut flour. Quinoa pasta is a special treat. Bananas are a decent vehicle for nut butters.<br />
<br />
Before I ate Jon's birthday cake, I'd been doing really, really well. I suppose that's why I took the risk. I remember telling Shawn before I ate it, "I haven't felt this good in ages!"<br />
<br />
Next time I get tempted to cheat, I will tell myself, "Don't spoil a good thing." And then I will make coconut flour cupcakes.<br />
<br />
Ach. I am sick of lettuce.<br />
<br />
I am thankful for lettuce. I am thankful for lettuce. I am thankful for lettuce.<br />
<br />
I am <i>very</i> thankful for coconut flour.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com1tag:blogger.com,1999:blog-7564143829615844614.post-4981120420845638042014-07-26T12:28:00.000-04:002014-07-26T12:28:05.691-04:00Living with LupusSometimes people ask me what it is like to have lupus.<br />
<br />
There is this famous explanation:<a href="http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/"> here.</a><br />
<br />
I think a lot of the stuff I see about lupus on the internet is kind of whiny. I might take a lot of flack for saying that. I understand that many people with lupus are sicker than I am, in more pain than I have, and they have more difficult lives than I live. I don't mean to downplay that at all; I just wish there were a way to help healthy people understand our lives without expressing a lot of self-pity.<br />
<br />
My lupus is not in remission. I need my hyroxychloroquine. However, with my hydroxychloroquine, my symptoms are quite well controlled. It is truly miraculous how so much of the pain that I was used to living with has gone away since I began this drug. I only take 200 mg per day, half what my NY doctor wanted me to take. My doctor here in IL is big on lower doses of medicine. I like that.<br />
<br />
What I don't like about lupus is this: it's expensive and you never know what is going to happen next.<br />
<br />
This is how I would describe lupus:<br />
<br />
You go to the doctor four times a year. Before you go, you have to remember to go to the lab where they will run a myriad of tests on your blood and urine every three months. These tests track the damage that lupus is doing to your body. They want to track where it is attacking, catch it early, and then treat your symptoms before they progress too far. Particularly, they watch your kidneys and your heart. These tests are very expensive, $1000 to $2400 per time, which is rough when you have a high deductible insurance plan from the Obamacare marketplace and you pay out of pocket for your first $12,000 of medical expenses per year. Most of the time, the tests don't turn anything up, which is something to be thankful for, except that it is a very expensive way to achieve peace of mind.<br />
<br />
While you are at the doctor, she asks you all about how you feel. You may be feeling pretty good, or you may have had some weird random symptoms. (Or you might be doing very poorly, but so far, in my case, this has not coincided with my doctor visits.) The last time I went, I'd been having weird, random pains in my big toes, shooting pains that woke me up in the night and kept me awake. My left thumb was also sore; it hurt badly when I would wash my hands and rub my fingers and thumbs together. I mentioned these symptoms to my doctor, wondering whether they meant anything or predicted anything or were related to anything. My doctor told me that I can take ibuprofen for the pain. Yes, I paid for a specialist doctor appointment to be told I could take ibuprofen for my pain. That's how it is with lupus.<br />
<br />
With lupus, you never feel great, and you sort of get used to it, the constant lack of energy, thrumming in your head, tightness in your joints, low-level nausea, neck pain. It becomes your normal, your baseline. But then, when the symptoms ramp up, when the head and neck start to hurt badly and you really can't face your food at all, it sort of creeps up on you, without your noticing, until all of a sudden you just feel really, really, bad, your whole body aches, and you don't know what to do. I recently had a couple of days like that, where I just wanted to bury my head in my husband's chest and cry because I felt so bad, and I wanted him to make it go away, and I understood why sick babies fuss.<br />
<br />
Lupus affects my eyes. I don't know whether it is the lupus itself attacking my eyes, or the hydroxychloroquine, which has a side effect of destroying vision. After over 40 years of having 20/20 vision, suddenly I can't see well at all anymore, and I have a terrible time keeping track of my glasses. I fear going blind. I try to look hard at things every day, my flowers, my dogs, the rooms in my house, the faces of the people I love. I want to get these things into my head and remember them. I worry about how I will find things I if I lose my sight. I have a lot of trouble reading. I still love to read, but I read much more slowly. It tires me out. And often my reading glasses make me sick to my stomach for some reason.<br />
<br />
I try to forget that I have lupus for the better part of the day every day. I try to not think about the things I cannot do. I try to simplify my life and be thankful for what I have, what I can get done. If I can't paint my rooms and move furniture and hang pictures, I can be thankful that I have rooms, and that they have everything we need for eating and sleeping and keeping clean and dressed. If the walls are not colors I would have chosen, at least they are walls, in good repair. <br />
<br />
I can walk my dogs, read my Bible, pray for my children, and usually I even have it in me to shop for groceries and make meals. I am so, so very thankful to my husband who works hard to provide for us and never complains about my lack of contribution (or my medical expenses!). I am thankful that this didn't develop until my kids were big and independent. I am thankful for essential oils and epsom salts and the soaking tub in my bathroom (that I never would have put in, but it came with the house).<br />
<br />
Lupus will shorten my life, but it will not ruin my life. I have lots of good days, and the bad days help me to recognize and appreciate the good days all the more. Having lupus makes me conscious of the need to love people, every day, as much as I can while I can.<br />
<br />
Lupus is not the worst. It will be okay. And heaven will be all the sweeter because of it.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-3950723662288332752014-03-24T13:04:00.000-04:002014-03-24T15:10:06.740-04:00LupusI've been totally neglecting this blog, but I think I'll use it sort of as a diary for lupus symptoms.<br />
<br />
Boring. Yes. But it will be helpful to me over the long run, and I'll leave it public just in case it might turn out to be helpful to anybody else.<br />
<br />
David doesn't think I have lupus. He just studied it, and he says it is not what I have. He also asked what I take, and when I told him hydroxychloroquine, he said, "That's not right. That's really bad for your kidneys. And lupus attacks your kidneys. They shouldn't give you that for lupus."<br />
<br />
Nevertheless, it is what they give you for lupus.<br />
<br />
For years I'd been tired and achy. I thought it was "just me." Honestly, I've never been a high energy person.<br />
<br />
In elementary school when we had to run the 600 yard dash, I always finished last, in a straggling group of kids with profound special needs, limping along, clutching the stabbing stitch in my side, embarrassed and blinking back tears. The kids in the neighborhood called me "the strike-out queen," and made great fun of me when we played neighborhood baseball games in the Reifenbergers' back yard. I could not hit a badminton birdie to save my life. I could not do a cartwheel.<br />
<br />
I figured out that eating a couple of jellybeans on a Sunday afternoon from the jar on the shelf at Grandma Rainbow's house would give me a wicked stomach ache during evening church. <br />
<br />
In high school I learned that all-night events were not for me, and if I did attend one, I knew I needed to take my sleeping bag to the quietest corner I could find and bed myself down shortly after midnight, or I would be sick.<br />
<br />
I never pulled an all-nighter in college. Not once.<br />
<br />
I figured out that aspartame gives me wicked, metallic-tasting migraines. <br />
<br />
When I worked, briefly, as a college graduate, I was sick literally every morning, fighting nausea on the commute in to work. Then I got pregnant and couldn't get out of bed for about two or three (or four?) months straight, due to the intense nausea and dizziness. How the Lord upheld me through four pregnancies, I will never understand, but I am so thankful for my children.<br />
<br />
There were points of life when I could cope, and points when I was simply awash in overwhelmedness and despair. When the kids were little and I was up an average of 5-6 times per night with them, I crashed and burned. I was the Worst. Mother. In. The. World. Somehow, by the grace of God, I kept them fed, changed and bathed. I washed clothes and cut up fruit. We went to the grocery store and the library, and we read books. We survived. However, there were days when I wanted to just call someone, some social worker, and say, "I cannot do this. I am dying. I need help." But I was afraid that if I did, they would take my babies away and I would never get them back.<br />
<br />
When they all got into school, I started trying to catch up on the sleep I'd lost over the previous years. When they were teenagers, we all slept until 10 or 11 on Saturday morning. I still felt as though I was in survival mode. There were all these things I wanted to do, and no energy to do them.<br />
<br />
My initial symptoms were fatigue, dizziness (things like being unable to stand in a long line at a store to check out without getting very woozy), neck and back pain, aching knees, and dry eyes that would unexpectedly and unexplainably start to tear violently sometimes when I was driving for more than an hour. Also, extremely sensitive teeth.<br />
<br />
When Jonathan was a senior in high school, I got a job teaching English and it almost killed me.<br />
<br />
Leading up to the job, I'd started to have some trouble with diarrhea. Once I started the job, the diarrhea became severe. I couldn't keep anything in me. I ate just enough (tea and yogurt mostly) to get me through a day at school. I'd have to time my yogurt cups so that I could run out of my classroom during study halls and not during classes I needed to teach. I tried to eat as little as possible to enable myself to have as few runs to the restroom as possible, but I still ended up in the school bathroom at least 3 times a day. This was every day. Literally, every day. No hyperbole here.<br />
<br />
I ate most of my food after I got home, because I was starving. The result: I was up multiple times every night with diarrhea. When I arose at 6:30 a.m. to head out for another day at school, I was never rested at all, especially since I was up past midnight most nights trying to grade and to get my lesson plans in line for four different classes (7th grade English, 8th grade Bible, 9th grade English and 10th grade English -- my first year ever teaching, no set curriculum to work from).<br />
<br />
I had diarrhea from May 2012 through August 2013. It was worst while I was teaching, September 2012 through January 2013. I lost 11 pounds. When I quit teaching, the diarrhea continued, but I was just so happy to be at home with it rather than at school with it, I almost felt as though I was healed.<br />
<br />
During that time, I also developed a pain in the fronts of my shoulders, in that indented area between your shoulders and your front ribs. it was intense. We wondered if it was rotator cuffs. It hurt right down into my arms, sometimes to my elbows, but was worst in the indented area. Things that hurt included: putting my arms into sleeves, trying to close the back of the van, and trying to find a comfortable position in which to sleep (there was none).<br />
<br />
My wrists also became painful during that time, which I noticed most often when exiting school by pushing on the crash bar. However, this pain was what I would classify as "bearable," whereas the pain in my shoulders was nearly unbearable, so I didn't pay much attention to the pain in my wrists. Once I was at the doctor and the nurses were feeling my joints. They were squeezing and twisting, and working over my wrists. Finally one of them asked me, "Doesn't that hurt?" When she called my attention to it, I realized that it definitely was hurting, actually pretty sharply. But I was so used to ignoring it, it had not registered until she pointed it out. I said, "Yes! It does hurt!" She said, "I would think so. The joint is quite swollen."<br />
<br />
A sad story: often at home with the kids, instead of recognizing that I was in pain, I would just get crabby. I'd lash out at them, and they'd flee the kitchen, leaving me to work alone (as I deserved). But strangely, often David would recognize that I was in pain when I did not realize it myself. He would come behind me and start rubbing my neck, and the relief that flowed through my body would just make me physically sort of deflate, although I was generally able to keep from crying. He was not afraid of me. He was sympathetic.<br />
<br />
Anyhow, I didn't get to the doctor until after I quit teaching in January 2013. He started running every test known to mankind in connection with diarrhea, except he didn't order a colonoscopy, which I thought was weird (but I didn't complain).<br />
<br />
In the meantime (I forgot to mention) I was getting extremely heavy menstrual periods for 7-9 days, every three weeks. Literally, more than 1/3 of my life was consumed with bleeding.<br />
<br />
By the time I was diagnosed with lupus, I was quite anemic, on top of everything else.<br />
<br />
The day the doctor called and told me I had lupus, I was actually relieved. It didn't feel like a sentence, it felt like an answer. It's lupus. There's a reason why I feel sick. There's a reason why I am always so tired. There is medicine. This was in March 2013. The doctor told me that I had lupus, that I'd need to take hydroxychloroquine for the rest of my life, and that it would take 2-3 months on the medicine before I noticed results. He said I should take 400 mg per day, but that it is upsetting to the stomach, so I might want to start out with 200 mg. and see how it went (I still had constant diarrhea). I never went up to 400 mg. but sometimes I take a pill in the morning if
I suspect that I forgot my pill the night before, and I don't worry if I
accidentally got a double dose. Double is better than missed.<br />
<br />
I started on 200 mg. and within two weeks, the pain in the fronts of my shoulders had subsided. I could finally sleep! After a few months on hydroxychloroquine, I noticed that when we had a weekend trip (like to take kids to college), I was bouncing back much faster, feeling normal after a day at home, rather than being knocked back for a full week as I used to be.<br />
<br />
We had to sell our house and move across the country between May 2013 and August 2013. It was a very stressful time, especially the last week of July 2013. However, I did survive. I made it. Very oddly, the day we arrived in our house here, my diarrhea shut off. Just like that. I have no idea what caused me to have diarrhea for 14 months, or what suddenly stopped it. <br />
<br />
In October, on Halloween, I had a breast biopsy to check some suspicious lumps (they were benign!), and on December 5, 2013, I had a hysterectomy. I believe that the hysterectomy has helped with the anemia due to mitigated blood loss.<br />
<br />
I had a severe stomach flu two weeks after the surgery and dropped back down to-- well, I'm not sure. I don't know where our scale is since we moved. But all my pants fall off me now, and even the tightest hole on my belt buckles is loose on me. Yesterday I wore yoga pants and reveled in the fact that they didn't fall down OR require a belt!<br />
<br />
We aren't completely settled in our new house yet, and we've been going through a kitchen remodel, which has been quite a bit more stressful than we had anticipated. But that's pretty much my story up to this point.<br />
<br />
The latest developments are probably fuzzy brain (I have trouble keeping track of my medical records because I can never remember the passwords to my accounts online), and increased stiffness after I spend time reading or studying or working on the computer. I also suffer quite a lot from being cold. I've been trying to avoid gluten, and I find that if I cheat on that now, I tend to get a migraine or have my lower back "go out" shortly after the cheat. Recently, my eyes and neck have been giving me less trouble.<br />
<br />
Sometimes I feel very thankful that my lupus is as mild as it is. I am pretty used to the way I feel, and I don't expect to feel different. I don't expect to be able to do things that require great outpourings of energy and physical activity. I am grateful for the sun that shines and the air that I can breathe. I am grateful when I can go for a walk, or relax with a cup of creamy, hot tea. I am grateful for bananas and kefir and all of the things I can eat that fill my belly and make it feel nice. I am grateful for a warm house and a comfortable bed. I am thankful that I can look forward to eternity with a restored, healthy body. It's going to be okay.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-83098194720653357322013-04-02T14:29:00.003-04:002013-04-09T10:14:07.122-04:00A year later... surprise, it's LUPUSThe shoulder pain did not go away.<br />
<br />
The latest is that the doctor thinks I have Lupus. He put me on an anti-malaria drug: hydroxychloroquine. He said I would feel better in 2-3 months.<br />
<br />
Surprisingly, my shoulder pain abated within a couple of weeks. I still feel very tired, and the medicine tends to upset my stomach. But my shoulder pain is definitely better; not gone, but better.<br />
<br />
I wonder if I should convert this blog to a blog about Lupus?Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-7919455184284940062012-07-23T17:02:00.000-04:002012-07-23T17:02:11.757-04:00Giving upI am giving up on this blog.<br />
<br />
Mostly because I now have shoulder pain that does not allow me to sleep. I am utterly unqualified to write about sleep. I haven't had a good, solid night's sleep since March.<br />
<br />
Now that I can only sleep on my back -- except that I can't sleep on my back -- I have at least found one thing that helps a little:<br />
<br />
I lay my down pillow across my stomach.<br />
<br />
I have a terrible time sleeping when my stomach is "un-grounded." This was a problem when I was pregnant, because prior to that time I had always slept smack on my stomach, grounded against the bed. When I no longer could sleep in that position, I learned to push my baby-filled stomach up against Shawn's back for a similar "grounded" sensation. I learned to sleep on my side this way. I still have a hard time sleeping on my side when I am by myself and the air in front of my stomach is all full of emptiness. <br />
<br />
Sleeping on my stomach hurts my neck and back.<br />
<br />
Now that I can no longer sleep on my side due to shoulder pain, I have to ground my stomach by laying my pillow across it. It gets hot. Last night I had a lot of dreams.<br />
<br />
If I ever think of something significant, I might come back. But let me officially put to rest any pretenses about this being a regularly maintained blog.<br />
<br />
It isn't.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-11499596612098035462012-04-19T12:39:00.002-04:002012-04-19T12:39:19.149-04:00A good linkHere is a helpful <a href="http://articles.mercola.com/sites/articles/archive/2010/10/02/secrets-to-a-good-night-sleep.aspx">link</a> about how to get a good night's sleep.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-85975621781881460902012-04-18T16:05:00.000-04:002012-04-18T16:05:38.192-04:00Bad shoulderSomething happened to me.<br />
<br />
My left shoulder has been no good lately.<br />
<br />
Usually I sleep on my left side, but I have been unable to do that for a few weeks. Yes, weeks.<br />
<br />
I'm tired. Also sore. Also, if this turns into something as chronic as my neck and shoulder pain, I am going to get fat. Because it hurts to move.<br />
<br />
Sorry I haven't been posting. If anybody stops by, please leave a comment and tell me what position you get into to fall asleep...<br />
<br />
...and, <i>please tell me</i>, what do you do when you can't sleep in that position?Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-48981678387994979632012-04-11T14:25:00.001-04:002012-04-11T14:26:10.442-04:00Nightstands and aestheticsLaura was home for a week over Easter.<br />
<br />
When Lu is home, we watch a lot of HGTV. We just do.<br />
<br />
So over the last week, among other things, I saw quite a few master bedroom makeovers.<br />
<br />
Can I just say? I do not really have any desire to sleep in the middle of an art project.<br />
<br />
One of the bedroom overhauls we watched involved a wall (the "headboard wall") that was covered with small blocks of wood, all in varied heights to create lots of "interest" and "texture". All I could think was, "That is one massive magnet for cobwebs." I vastly prefer my walls flat and smooth and not in need of vacuuming. There are enough things I need to vacuum, and I chafe at the thought of adding walls to that list.<br />
<br />
And then the bedside tables. Oh. my. word. Bedside tables need to be <i>useful</i>. I do not want a bedside table that is a circle of glass precariously balanced on a winding hunk of driftwood and ornamented with a sophisticated array of candles and glass balls.<br />
<br />
I want nice, sturdy nightstand with a drawer where I can keep stuff I need.<br />
<br />
I want a simple nightstand with a top surface where I can keep more stuff that I need, and useful things like an alarm clock, something that will play music, and a lamp.<br />
<br />
You see, I feel quite strongly that it is nicest to be able to stay in bed once I have arrived there.<br />
<br />
(I did not do very well as a mother of babies who did not sleep through the night. The best thing about that phase of life is that it passes. It may pass like a kidney stone, but it does pass, and most of us survive.)<br />
<br />
So.. since it is nicest to be able to stay in bed once you have gotten there, you can stock your nightstand to facilitate that goal. Here is a list of things I like to keep on my nightstand:<br />
<br />
<ul><li>A glass of water. To be exact, I keep a half of a glass of water. A half glass has always been plenty. It balances better and is less apt to spill. And if it does spill, it is less water that has spilled.</li>
<li>My cell phone. Ever since my kids have begun ceasing to live at home, I like to keep my cell phone next to my bed at night.</li>
<li>My Bible. And other books. Lots of books, probably too many. Definitely too many to suit a designer.</li>
<li>A pencil and some notecards or scratch paper. That way, if I find that I am worrying about something that I need to remember for the morning, I can write it down and then go back to sleep. (I keep these in the drawer. I also keep chocolate in the drawer. Shhhhh.)</li>
<li>My eye ointment. I keep this right by my bed, because I always hope that I won’t need it. However, I have dry eyes, and at night they get sticky. I almost always need my eye ointment, and it is very handy to have it right there within reach. Other people may have other medications or pain relievers that they like to keep nearby: menthol gel rubs, or aspirin or hand lotion for dry, cracked hands. Personally, I like to have my eye ointment.</li>
</ul><br />
What do you like to have nearby when you go to bed?Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-51808124695668033802012-03-28T21:57:00.000-04:002012-03-28T21:57:57.595-04:00The last nightIf all goes according to plan, and if God wills, this should be the last night that Shawn is gone for awhile.<br />
<br />
I don't mind saying, I miss him.<br />
<br />
Tomorrow he flies home from Vancouver through Minneapolis and NYC (LaGuardia). It will be a very long day for him. I am supposed to pick him up at midnight in Syracuse.<br />
<br />
I pray God keeps him safe and surrounds his airplanes with heavenly angels to bring him home.<br />
<br />
I sometimes don't feel like going to bed when I am out of synch and out of sorts. Tonight I don't feel like going to bed. I haven't been able to eat dinner. I have a lump in my throat. <br />
<br />
But tomorrow is another day, and I have things I need to do.<br />
<br />
It is a good time for a bedtime Bible verse:<br />
<br />
<i><b>Psalm 127:2 (ESV)</b></i><br />
<i><b>In vain you rise early and stay up late,</b></i><br />
<i><b>toiling for food to eat -- </b></i><br />
<i><b>for He grants sleep to those He loves. </b></i>Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-64360880219769939452012-03-26T12:07:00.005-04:002012-03-27T10:04:32.280-04:00Five ways to prevent bad dreamsI have a longer, prosier post to share on this subject, but today I'd just like to give you <b>five things</b> you can do to reduce the number of bad dreams you have.<br />
<br />
(1) <b>Do not watch horror movies or occultish TV shows, and do not read scary books.</b> I find that even when things do not seem the least bit frightening during the day, at night the images they stimulated my mind to store can go sour and become terrifying. I vigilantly work to protect my mind from cataloging fodder for nightmares.<br />
<br />
(2) <b>Do not eat meat or cheese after 7 p.m. in the evening. </b> Rich foods require your body chemistry to work hard to metabolize them. When your body is working hard on metabolism, your body temperature tends to go up. And when your body temperature is a bit higher than normal, you are at higher risk of bad dreams.<br />
<br />
(3) <b>Sleep in a cool room with good air exchange. </b> Hot, stuffy rooms can raise your body temperature and induce bad dreams in much the same way that rich food does.<br />
<br />
(4) <b>Deliberately meditate on good things as you fall asleep.</b> My favorite sleep thoughts: the attributes of God (start <a href="http://ruthmem.blogspot.com/2011/06/attributes-of-god.html">here</a> for an alphabetical list of them).<br />
<br />
(5) <b>Make peace.</b> Live at peace <a href="http://sleepatpeace.blogspot.com/2012/02/learning-to-forgive-three-simple-steps.html">with others</a> and <a href="http://seekingwisdomcravinggrace.blogspot.com/p/peace-with-god.html">with God</a> so that disturbing thoughts of hurt, anger, fear and unforgiveness do not plague you in the night hours.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-34969614479233501662012-03-23T15:22:00.000-04:002012-03-23T15:22:01.155-04:00Sleeping with a bad backThis is not a panacea, so don't get the wrong idea. It's just <i>one small idea</i>.<br />
<br />
When my back hurts a lot, sometimes it helps to <b>sleep on a sofa.</b><br />
<br />
Ordinarily, I cannot sleep flat on my back. It hurts my stomach, for one thing. And I find it generally uncomfortable.<br />
<br />
Unfortunately, when my back and neck are in spasms, all of my regular sleep positions exacerbate the pain. At the same time, the one position that offers some relief for my back (flat on my back) is not a position in which I can sleep.<br />
<br />
However, I can sleep on my back on a sofa if I pull up my knees and lean them gently against the back of the sofa.<br />
<br />
Do you suffer from back pain? If so, what sleep positions have you found helpful?Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0tag:blogger.com,1999:blog-7564143829615844614.post-18373885301813125592012-03-20T13:18:00.004-04:002012-03-20T13:26:09.902-04:00Sleep and the Spring EquinoxToday marks the day when the daylight hours begin to exceed the dark, night hours in a 24-hour day.<br />
<br />
My spirits always begin to rise as soon as we get past the Winter Solstice which is also usually my birthday and right before Christmas. My spirits rise because at that point, the days begin to lengthen rather than shorten, and that is a very encouraging thought, even though the daylight hours are still short in mid-winter.<br />
<br />
Today we mark the beginning of my favorite quarter of the year, the time between the Vernal Equinox and the Summer Solstice. Today there is equal sunlight and darkness, and after today... after today the darkness will recede while the daylight hours lengthen until we reach that glorious day, the longest day of the year, <i><b>the Summer Solstice</b></i>.<br />
<br />
I am surprised that there is no major holiday on the Summer Solstice (it's June 20 this year). Christmas is at the Winter Solstice, Easter is near the Vernal Equinox, and Halloween is (loosely) near the Autumnal Equinox. All we have around Summer Solstice time is the Fourth of July. It always seems strange (and wasteful) that on the holiday nearest the Summer Solstice, we wait for the long hours of sunshine to pass so we can shoot off fireworks in the dark. But whatever. We have some nice parades and picnics. I guess God didn't figure we needed much additional cheer on the longest day of the year; just its being what it is is gift enough.<br />
<br />
So... I guess it's time to get out of hibernatory mode and start to enjoy the light. We're good until September 22 when the Autumnal Equinox arrives, after which the days once again begin to be shorter than the nights.<br />
<br />
I always feel a little bit panicked between the Summer Solstice and the Autumnal Equinox, as the days are shortening, even though they are still on their long half of the year.<br />
<br />
After the Autumnal Equinox until the Winter Solstice, I downright fight depression. But after many years of this, at least I always know that I will be feeling quite a bit better, even by January 1.<br />
<br />
But today, <i>today I bask in the glory of the next three months, the hope, the light, the promise.</i><br />
<br />
And I will need a little less sleep,<br />
<br />
and the bright mornings will be sweet,<br />
<br />
and the warmth of the sun will soothe my muscles and melt my mouth into a smile.<br />
<br />
Use your day well. Tire yourself in a healthy way during the daylight. And then sleep at peace.Ruthhttp://www.blogger.com/profile/11093621296828810512noreply@blogger.com0