Sunday, February 13, 2011

Dear God

Dear God, is it too much to ask for a regular night's sleep schedule in my life?! This insomnia trip I'm on is really starting to get to me. How can I get to church tomorrow (well actually, later today now) if I can't get some sleep tonight?! Please! I'm begging You to have mercy & give me sleep (more than the standard 2 hours a night I've been getting). My days are wasted in fatigue & naps & my nights are wasted begging for sleep. :-( I can't keep living like this and being totally useless because I am too tired ALL the time to do ANYTHING! I'm getting very frustrated and angry about this. So, please God, let me sleep again. I can't function without rest and it's making my already crappy body crappier. It's killing my attempt at diet & exercise, as well as robbing me of my church attendance and any hopes I might have of keeping my housework done, and have any social interaction that doesn't involve the Internet because when I am awake--like NOW--the rest of the people in my social circle are ASLEEP! You let me have lupus, for reasons only You understand, must you also plague me further with insomnia that makes my lupus kick into action because I'm so overtired, the slightest of activity makes me ill. Please show me mercy and cast this insomnia from my life. The doctors & I have tried everything in our earthly arsenal to combat insomnia to no avail. So now, I know only Your hands can lift this veil of chronic fatigue and insomnia from my life. AMEN  

Tuesday, February 8, 2011


Today I felt better than I have in about a week.  I was very tired though, because I only got about 2 hours of sleep last night.  So I stayed in bed all day watching the shows I have recorded on my DVR, knitting, and reading a book during commercials.  I like to multi-task, LOL!  I also took several cat naps which helped me to feel even better by this evening.  I am still a little fatigued and running a low-grade fever, but such is the life of a Queen with Lupus. 

I have been thinking about my life and I confess I am not entirely happy with the place in which I find myself at the present.  While I was very happy to get my diagnosis in December, that happiness has faded into reality and I stop and ask myself is this disease going to rule my every move forever, as it does now?  Will my life be so solitary, as it is now, because I will be too often unwell to entertain a social life?  Will my life forever be so crowded with doctor appointments that I can never hope to hold down a full-time job?  Was all that I went through to get my degree done in vain because this illness holds such power over me that I will not be able to use that expertise to have a career?  Will I always feel like a burden to my family and an anti-social to my friends?  How is my chronic illness going to affect the life of my daughter, who so often has to see me exhausted and in pain?  How will my inability to work and have a social life affect my daughter's learning of work ethics and moral codes?  I look at the life I have now, and while I am very thankful to be blessed with the most loving, understanding, helpful husband and daughter a person in my situation could possibly hope to have, I can't help but feel that I should have accomplished more in my life by now.

I had certain expectations for what my life was going to be like when I was young.  Being chronically ill was not part of my plans, but then again neither was being left by my ex-husband to struggle as a single mother working several jobs at a time while going to college full-time for 8 years to get a 4 year degree!  I had to drop classes for health reasons so many times, but I never gave up.  To be honest when I finally graduated, it was so surreal to me, because I never really believed I would EVER graduate.  When that graduation day came, I thought the end to my financial struggles was at hand, because I was going to use that degree to have a career and everything was going to be okay.  Two years later, after working a demeaning job for $500 a month in a school system as a paraprofessional, I quit that job to allow myself the freedom to look for a REAL job that would recognize my education with a REAL salary, and also because I was so sick, there was no way I could work full time.  Six months later, I'm still sick, and unemployed.  I am having trouble accepting both of those realities as MY reality.  Is this really all God intended for my life?  To be a chronically ill stay at home mom and teach a youth group at church on Sunday Nights?  For so long I felt called to work with special needs children, but the state I live in won't recognize my degree or certification testing to allow me to teach (and there is the problem of extremely limited teacher job opportunities because of the economy and HUGE budget cuts to education). 

So I am ashamed to admit that as blessed as I am in some ways, I feel cursed in others.  I feel guilty to feel that way because I know there are tons of people out there with a life WAY worse than mine.  I still feel that there should be something more to my life. I am confused by the messages I felt God was sending me, because I went after certain goals in my life with the feeling that God was leading me there, only to have those doors slammed in my face, time and time again.  I do know the cliche about doors and windows, but I haven't seen either opening in a long time. Part of me feels like giving up on those old hopes and dreams and just living my life day-to-day and accept it as it is.  Another part says I shouldn't give up and maybe I need to go BACK to college (and I REALLY HATED EVERY MINUTE THE FIRST TIME) and get what I need to make this state happy to recognize me as a teacher.  Another part says I should regroup and go after a new goal that perhaps I haven't considered before. 

So now I am going to bed feeling confused, but a little better to have vented all that off of my heart.

Monday, February 7, 2011

Just Make it Through

I am still feeling the ill effects of this cold, rainy weather.  I suffered terrible migraines and joint pain all weekend and woke up AGAIN this morning feeling the same way.  The only thing I got accomplished in the last three days is filing our taxes.  Other than that I mostly have been trying to sleep off the migraines and deal with the nose bleeds.  Sorry this entry is so short, but my hands are killing me, which doesn't allow for extensive typing.  I was hoping to be feeling better today so I could start the Zumba exercise classes with my mom and sister.  I packed on some extra pounds over the months of combined bedrest and bi-weekly steroid injections.  I just can't seem to get to a place where I can exercise.  I know I would feel better if I could exercise, but I can barely make it to the mailbox these days.  It sucks to be this young and feel worse than most 80 year olds that I know.  I can't even imagine what I'll feel like by the time I'm 80, if I even make it that far...

Saturday, February 5, 2011

Lupie Guilt

As my last post indicated, I had a plan to accomplish many things yesterday.  However, thanks in part to this lovely cold, wet weather we are having, I woke up with a huge, nauseating migraine and every joint on fire.  I fumbled through getting my daughter ready for school and then downed my morning meds plus a migraine pill and an anti-nausea pill and crawled back into bed.  As I layed there willing myself not to throw-up, I realized that it was going to be another entire wasted day.  Systemic Lupus sufferers out there know that plenty of days happen that way and there is really nothing we can do about it.  We know if we try to push ourselves on a day like that, it will only result in 3 more wasted days trying to recover.  So I have had to learn to scale back my to-do lists, learn my physical limits, and try very hard to let go of my OCD driven need to accomplish everything exactly according to plan and with perfection.  My perfectionist attitude is what earned me my label "Queen of Everything."  I also get referred to as "All or Nothing Annie."  When I take on a task or plan an event or even just a list of errands to run, I get very uptight about everything being "just so" and I tend to go all out to the point of totally stressing myself out and becoming overwhelmed.

Lupus is teaching me that I can't live that way and stay healthy.  Stress is the enemy of Lupus.  So I have learned that some days I need to spend the whole day cat napping and doing as little as possible so I don't bring on a flare.  The problem with that is it causes me a great amount of guilt.  I was raised by a work-a-holic mom who often worked several jobs at a time and went to college full time, in addition to having two kids to raise and a deadbeat husband who was more hindrance than help.  She instilled this perfectionist work ethic in me, "Anything worth doing is worth doing well."  "Idle hands are the Devil's workshop," was another saying which meant, you should always stay busy working.  The fact that I can't live up to those expectations really bothers me and makes me feel like a failure.

This current flare has lasted for months and during this time, I have been forced to spend much of it in bed or on the couch.  Having a hyper-active mom and sister who constantly make snide remarks about me being a hermit, anti-social, lazy, etc has really taken it's toll on my emotions and my husband's and daughter's.  My husband and daughter are becoming resentful of hearing nasty, passive-aggressive remarks about me because they know I am sick and can't help it.  I feel like I am constantly being judged.  I don't need their disapproval quite frankly, because I have enough of my own. 

Having a chronic illness that limits my activity level makes me feel like a burden to my family.  I feel like a financial burden to my husband because I have been unable to work.  When my ten year old daughter has to make soup for her mommy and herself for dinner because I'm too sick to cook and clean up, I feel like a failure as a mom.  When my house isn't spotless because I am too sick to keep up with all the housework, I feel guilty when my husband and daughter have to pick up my slack.  I feel like a bad mother when my husband is at work and I have to spend a whole day sleeping because I haven't been able to sleep for over 48 hours, and my daughter has to spend that day alone watching TV.  I feel like a terrible friend when I have to keep turning down invitations to parties, game nights, dinner dates, and visits because I'm just too exhausted to get all dressed up and put on make-up and fix my hair.  I feel guilty when I can't make it to church on Sunday mornings because I didn't get any sleep the night before and I can't get out of bed in time to get ready.  I even feel bad for not having the energy to walk the dog. 

The bottom line is that having Lupus isn't just physically painful, it's emotionally painful.  And even more so when friends and family aren't supportive and helpful.  It is disappointing to have had dreams for my life and to have to accept the fact that I may not ever get to live out those dreams because I may not be well enough to handle having a full-time career.  That thought is always in the back of my mind and it makes me feel like such a burden to my husband because I can't contribute financially to the household, even though I went to college and got a degree to be able to do just that.  I don't need people to keep pointing out the fact that I don't have a job--I already figured that out for myself.  And for the record I have been looking for jobs and have applied for over 50 jobs in the last 2 years.  It just so happened that I graduated from college the same year the bottom dropped out of our economy, and to top that off, I became increasing sick from that time to the present. 

So get off my back critical people, I have enough self criticism and guilt to shoulder without any help from you.

Thursday, February 3, 2011

Cold, Wet Weather is Not My Friend

It seems like everytime I start to feel better and am able to get up and about for a few days the weather turns cold and rainy and literally rains on my parade of feeling good.  Tonight I am in a great amount of pain.  I actually have tears in my eyes.  I am going to try to find a comfortable position and see if I can get some sleep because I have a ton of medical errands to run tomorrow.  (Remind me to share the funny story about finding a comfortable position tomorrow!)  I need to save any spoons I might waste on a good, witty blog post tonight for tomorrow.  I have to go on a quest for an oxygen machine for me to have to help me sleep at night since a sleeping test revealed my lungs are so crappy my oxygen sats at night drop to 52 because I breathe too shallow.  My insurance company feels the need to haggle with my doctors about their order for my oxygen machine because apparently I don't have enough problems in my life, I need to also jump through hoops to be able to breathe at night so I can actually get a decent night's sleep.  I also have to haggle with them about where to have blood drawn for labs that need to be run for my daughter.  Then I have prescriptions to pick up and have to meet with my daughter's primary care physician to get local referrals for the orders for her aquatic physical therapy, custom podiatry inserts, and neoprene knee braces that the specialist who is two hours away prescribed for her.  I have a feeling that before the day is over tomorrow, given my pain levels and severe lack of sleep, that someone at Blue Cross Blue Shield is going to meet my alter-ego, "Madea." Yes, for those of you just getting to know me, I have an angry, old-school, no nonsense, black lady that lives inside me and only comes out on occassions when I need to break my foot off in someone's rear-end to get things accomplished.  I just hope tomorrow is not the day "Madea Goes to Jail." LOL  Wish me luck!

Wednesday, February 2, 2011

Ground Hog Day??

Well, today while the rest of the world was glued to their television sets anxiously awaiting a seasonal weather change prediction made by, of all things, a large rodent, I was off on an auto-immune adventure.  On a side note:  My sincerest apologies to all you meteorologists out there with $100,000 in student loans you're struggling to pay back so you could tell the world about the weather, only to be upstaged annually by a friggin huge rat.  I think we should have an Al Roker day or something like that, just to show some love to the human weather predictors.  But, back to my adventure.  You see it seems my family is the family you want to procreate with, if by chance, you are looking to hit the auto-immune disorder jack-pot.  If it's an auto-immune disorder, and you can name it off the top of your head right now, I can almost guarantee some poor bastard in my family has it.  I told you that, to tell you this, my daughter, who is now 10, was diagnosed at age 3 with Juvenile Rheumatoid Arthritis, thanks largely in part to her awesome gene pool.  Today I had to drive her 2 hours to a hospital to see a new pediatric rheumatologist because her old one retired.  Anyone who knows me well, knows that in addition to my pathological fear of different kinds of food touching on my plate, I am also deathly afraid of driving in big cities--especially big cities I have never been to before.  I had 3 drivers lined up to take us to this appointment. I made my best efforts to plan ahead and have back up drivers B and C, in the event that A or B couldn't go, I would still have C to fall back on.  I guess I forgot how crappy my luck is, because A, B, and C backed out YESTERDAY when I had no time to find a D driver.  So I had to hoist on my big-girl panties this morning and drive her to the appointment.  It wasn't that bad of a drive, although I did have several small panic attacks trying to find a place to park in the parking garage--stop rolling your eyes, have you seen how many people get accosted and murdered in dark, scary parking garages on Lifetime Network?  Anyhow, I liked the new doctor. She was very thorough and had a big list of things we need to do.  Now my daughter has to start aquatic physical therapy, get custom inserts made for her shoes, and wear braces on her knees.  All my daughter heard was, "Yadda, yadda, yadda, swimming." YAY.  She loves having her favorite sport prescribed for her year-round. 

Finally made it back home and walked past the dishes in the sink from breakfast with a slight cringe as I suppressed my OCD urge to jump on them and scrub.  If I stopped to do them, I'd never have the energy to take off my make-up, feed the dog, and change into my pajamas, so I passed the buck to my daughter.  I am so exhausted from running to a different appointment every day this week and only getting a few hours of sleep every night.  I am also worn out from hearing my mom harping on me to get a job.  WHAT JOB? Has she met our economy?  I've been applying for jobs since August and I either don't get called back or I'm told I'm over-qualified because I have a degree.  Besides that, I have been practically bed-ridden for the past four months from this hellacious lupus flare and I'm still not what you'd call "well." My rheumatologist was looking for the "effed up" box to check off on my diagnostic sheet when I was there yesterday!  I don't feel well enough to work a full time job right now, besides how would I fit it in to my never-ending schedule of doctor appointments for my daughter and me?  My mom says if I just force myself to get up and pretend I feel good that I will start to actually feel better.  Yeah, yeah, and if I think happy thoughts and sprinkle fairy dust on my boobs they will float back up to their younger perkier position.  Whatever.  :-P

Tuesday, February 1, 2011

Why Start This Blog?

I decided to start this blog because after suffering from symptoms since the age of 16, I was finally diagnosed with Systemic Lupus this past December at age 32! But for all of the years in between I have been the victim of many misunderstood medical mysteries and harsh judgements from friends, family, co-workers, and doctors alike.  I have been treated like a hypochondriac, a manic depressive, and an attention seeking loony who was faking lots of crazy symptoms apparently just for the hell of it (and still am treated that way by some people).  Despite the fact that I had blood tests, urine tests, MRI's, CT Scans, EKG's, X-Rays, Spinal Taps, Pulmonary Function Tests, Ultrasounds, Colonoscopies, and Laproscopic surgeries that all found abnormalities and Lupus was suspected by some doctors, the widely held beliefs in my family and circle of doctors were that I was just "depressed" or having "phantom pains" or I was just looking for excuses on which to blame my being "fat and lazy."  So in addition to having MANY surgeries as a teen and in my 20's to remove many non-working organs that you can have removed and still live without, I was ridiculed and had anti-depressants shoved at me. 

Constantly having health issues and not being taken seriously, by even the people you thought were most close to you, really starts to take a toll on your emotions.  After I turned 30 and my symptoms became increasingly worse with each passing year, I finally found the right doctor who did a kidney biopsy to diagnose my lupus and at the same time discovered I also  have two types of kidney disease.  He was smart enough to realize that if my blood tests kept fluctuating (making a blood test based diagnosis impossible) that he needed to find another way to make the diagnosis instead of treating me like a liar and a hypochondriac.  He could SEE the Mylar rashes and my swollen joints, hands, face, and feet.  He could see the blood and protein in my urine and the liver enzyme reports that were through the roof.  The funny thing is, that all the other doctors saw the same things and dismissed them just because my blood tests were never consistent--so clearly I had to be crazy. That was the only possible diagnosis.  And as for my family, they were convinced it was all an act. So I started to actually FEEL crazy.  What if it WAS all just in my head?  Was I really such a talented actress that I could make Mylar facial rashes appear at will?  And what about all those blood and urine tests? Did I fake them too?  And that stunt of making my hair fall out in patches was especially talented on my part.  Man, if I was capable of all that, I really should have packed up and moved to Hollywood! 

Once I started talking to other people with Lupus on Twitter, I found out that many of them suffered the same abuse from their doctors, friends, and family.  It helped me so much to know that I was not alone in my situation that I decided to start this blog to share my story to help other people out there with Lupus know that THEY aren't crazy.  Their pain (the physical and the emotional) is real and deserves to be validated.  I am writing this blog in hopes of connecting with other Lupus patients and their families to make an outlet for discussing what it is like to live with Lupus and/or to love someone who has Lupus.  (And hopefully bring some smiles and LOL moments along the way.)  Of course I will talk about other topics because Lupus isn't my WHOLE life, but it certainly affects how I live my life.  I encourage other people to share comments and questions as I share my journey through life, a life with Lupus.