June Lupus Flare Part 2

After being admitted to the hospital, the first thing they wanted me to do was give them a urine sample.  Well, I hadn't had any food or fluids in three days, so all I could manage to produce was a few drops of what resembled a blood sample more than a urine sample.  The nurse said that was not a good sign given the fact that I have two types of kidney disease.  The next lovely event on the agenda was to start an IV on me so they could begin trying to rehydrate me.  I knew I was really dehydrated, but I was about to find out just HOW dehydrated I really was!  The first nurse stuck me three times and could not get a vein.  I was trying to remain calm and be reassuring to the nurse so I wouldn't make her nervous about trying to get my IV started.  I told her I was a really hard stick on a good day because my arms are full of veins that roll and break, and given the fact that I had just lost 26 pounds in two weeks, my level of dehydration was making it much worse.  She tried one more time and broke another vein and my panic disorder started to make an appearance.  I am extremely afraid of needles, so by the fourth stick I was beginning to get teary-eyed, shaky, and labored breathing.  I cannot STAND to have a panic attack in front of anyone!  I always go and find a place to hide when it happens because it is SO embarrassing to be a grown woman crying and shaking uncontrollably like a little baby and once I get started, there's no way to turn it off!  That nurse left the room a nervous wreck and came back with two more nurses to see if they could get my IV started.  Nothing like adding insult to injury!  Now I'm having a full blown panic attack in front of three strangers who are all invading my personal space in a claustrophobic room while jabbing me repeatedly with needles!  All they could have done to have possibly made it worse was throw a damn spider on me!  Long story short is that six nurses and thirteen needle sticks later (no I'm not exaggerating, believe me, I wish I was) I finally had an IV started! 

I started getting a huge migraine from getting all stressed and panicky while being so weak and dehydrated and my stomach was really killing me.  All the nurses left the room and I thought I would finally be able to relax because the worst part was over.  WRONG.  In walks a phlebotomist.  GREAT.  More needles.  She tried three times to draw blood only to break a vein each time.  I start panicking again.  She calls for back up and two more vampires arrived to collect my blood and broke some more veins.  They ended up cutting slits in the tips of fingers and milking the blood from them into the vials they needed to fill.  I was now in full blown nauseated migraine pain, dizzy, stomach pain out of this world and exhausted.  I was so ready to get some meds and just rest, but of course I had to go to x-ray first.

I was only back in my room a few minutes when my preacher and his wife were there to visit!  I didn't even know they knew I was in the hospital!  My best friend had contacted them to let them know I needed prayers and they decided to come and check on me and pray for me.  I thought it was so nice for them to come and see me, especially so quickly.  At the same time I felt hurt that my own family wasn't showing the same level of care and concern.  I had called my mom earlier and asked her if she could bring my phone charger when she comes to visit me because my cell was going dead and she told me she didn't know if she was coming up to visit or not, but she might if she decided to come to town to pay her electric bill.  Wow, as long as you can fit me into your errands Mom, don't go out of your way to come visit me.  Sometimes my family really hurts my feelings with their reactions to my illness.  I guess they look at it as a routine thing that I am sick, so it doesn't warrant any special attention.  I just know if one of them were in the hospital I would be there for them.

The doctor came by to visit that night (my mom, by the way, did not) and told me he was going to be testing for any kind of bacteria or virus or parasite that could be causing my problems just to be sure he doesn't overlook anything.  His gut feeling was that it was lupus related, but he never likes to take chances and miss something important.  He said he was alarmed with my urine results because my kidneys were obviously struggling, but being that I was severely dehydrated, he was hoping that getting some fluids into me would be a big help with that.  So the waiting game began as I spent my first (mostly sleepless) night in the hospital.  I had to be put on morphine for my pain and migraine so I was in and out.  The next day would prove to be a bit of a eye opener for my mom.

TO BE CONTINUED...

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...

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.