Monday, December 14, 2015

A bad day

Sometimes lupus gives you a bad day.

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.

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.

Today should have been a good day.  I had fun things to do, friends to be with.

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.

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.

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.

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.

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.

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.

1.  We could find that I have a serious problem that needs expensive treatment.  Boooo.
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.

I am going to try to wrap about five gifts, and then I am going to try to go to bed early.

I will not try to figure out what to do with this bill until tomorrow.

Thursday, October 8, 2015

Lupus losses

While I know there are people who suffer greatly with lupus, I am not at that point yet.

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.

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.

Additionally, lupus is a very costly disease.  The expense is more overwhelming than the actual symptoms, most of the time.

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.

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?

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.

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.

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.

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.

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.

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. 

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.

Why can't I be grateful for the great salvation that is mine in Christ Jesus?  What is wrong with me?

Friday, May 1, 2015

Happy 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.

Now I am bushed.  Lupus makes me feel so stupid.  I mean seriously, who could be bushed from that?

I guess this is my complain-y blog.  I try to keep the whining off my other blog these days.

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!

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: helps.  There are things that help, but there doesn't seem to be anything that cures.

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.

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.

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.

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.

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. 

It is over now, and it will be okay in the end.

Resting while writing has calmed me.  It was a profitable endeavor.

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.

I am going to have a happy May Day.  It is May first, and it is glorious.

Lupus can knock me around a little, but I am learning how to prevent it from getting the better of me.

Friday, February 20, 2015

Lupus and the flu vaccine

Lupus is a problem of the immune system.

Vaccines, sometimes also called immunizations, are formulated to stimulate the immune system to produce antibodies to fight a specific disease.

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.

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.

So you see: vaccines, which I think are actually a very good thing and a very good idea, generally, are a way of working on the body's immune system, stimulating it to go to work and build up defenses against diseases.

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.

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.

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. 

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, however . . .

Outside of those two years when I got the flu shot and also contracted the flu, I have only had the flu one other time in my life.  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.

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.

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.

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."

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.