Thursday, September 15, 2011

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.


Wednesday, September 14, 2011

June's Lupus Flare Part 1

Back in June I was having a lot of stomach problems.  I was having severe stomach pain, nausea, vomiting, diarrhea, heartburn, and cramping no matter what I ate.  I went from eating anything I wanted to crackers and water over a two week span.  Then the crackers and water wouldn't even sit well with me.  My mom and sister were out of town on vacation together and I was taking care of my disabled father and my mom's dogs, so I couldn't go in the hospital until they got back.  I tried to ask my mom what she thought was going on with me because I knew it wasn't a virus as I had no fever and it was lasting too long.  She would just act annoyed when I would give her a run down of my symptoms and tell me to go to the ER.  So when they came back from their vacation I called and made an appointment with my GP, who is also a family friend.  He wanted to see me ASAP when I told his wife I had not eaten or drank anything in 3 days and I felt very weak and dizzy.  He said he was probably going to hospitalize me.  I called my mom and asked her if she could keep my daughter while I went to the appointment and she wanted to know why.  I told her that the doctor was probably going to hospitalize me and and she said, "For WHAT?!"  As if that were the most absurd notion she had ever heard.  I became agitated and reminded her that I had been telling her for the past two weeks that every time I try to eat I get really sick and can't keep it down.  Her delightfully caring response was, "Well, that can't be true because if you didn't eat anything for two weeks you'd be DEAD!"  I told her I didn't say I hadn't eaten ANYTHING in two weeks, what I said was, everything I TRY to eat for the past two weeks makes me sick and the past three days I had not eaten anything.  I went on to explain that obviously if I knew that eating things made me sick, that I had to have been eating SOMETHING, otherwise how would I know eating made me sick?!  She got all exasperated like she always does when I get sick again, but agreed to watch my daughter.

When I stepped on the scale at the doctors office it was the first time ever that I was happy to see the numbers!  I had lost a whopping 26 pounds in two weeks!  Now if you know me, you know what a miracle that is.  For those of you who don't know me, let's just say that one time I was on diet pills for nine months and ate nothing but salads, yogurt, and fruit and at the end of the nine months I had somehow managed to GAIN a pound.  So as soon as the doctor saw how much weight I lost since I my last visit two weeks prior he slammed me straight in the hospital.  I called my mom and my husband to let them know I was being admitted and went over to the hospital and this is where my day began to get interesting!


Lupus is Lonely

I spent a dreary weekend clouded with depression, loneliness, and despair.  I'm tired of being sick and tired.  I'm sick of opening a mailbox busting with bills I can't pay and past due notices.  I'm so over checking the carport in fear each morning wondering if my vehicle survived another night without being repossessed.  The phone calls from collection agencies are like background noise now, as I ignore them and let them go to voicemail.  What could I say if I were to pick up?  "You can't get blood from a stone."  I'm sure that would really appease them.  The truth is, I'm at one of the lowest points of my life physically, financially, emotionally, and socially--and all thanks to the demon that stalks my entire existence, Lupus.  Let's give him a big round of applause!  He has single handedly managed to take down my whole life like a lion taking down a baby antelope.  I didn't have a chance.  It's awfully hard not to be bitter when I've tried so hard all my life to be as close to perfect as I could get.  The thing about Lupus is, he has a way of knowing all my weaknesses, like my kidney disease, even before I did!  Lupus has proven to me just how imperfect life is, and I am.  And I really loathe him for that.

Lupus has even changed my relationships! I decided to try to get out this weekend so I called my mom Friday night and told her I wanted to go to see a movie with her and my sister on Saturday because my sister's birthday was Sunday.  She replied she didn't know yet what she wanted to do on Saturday.  So Saturday I was hanging around the house waiting to hear from her.  Sometime around mid-day, my brother-in-law calls and asks me if I want to come to a steak dinner he is having for my sister that night.  I told him that my stomach was bothering me, but if I felt better that night I would come over.  I asked him what my sister was doing because I was going to run it past her about going to a movie, and I am informed that she left early that morning to go yardsaling (which is one of my favorite activities), shopping, and out to lunch with mom.  I tried not to sound hurt and quickly got off the phone.  Had I not just called her the night before and asked to go to town with them?  They snuck off without me!  Not even as much as a phone call.  I decided I wasn't feeling well enough to make it to their steak dinner party.  I'd had my share of cutlery use (picking them out of my back) for the day.  Besides I can't even digest steak (another round of applause for Lupus!).  When I asked my mom yesterday why they left me out she said they never know when I'm going to feel good, not feel good, be asleep, not want to be bothered, etc.  Which she does have a point because I do get pretty cranky when people interrupt my sleep (because it's such a precious commodity).

I have three friends who call me fairly regularly to invite me to go do things with them and I usually have to turn them down.  When I really think about it, I can't believe they still call and ask!  The rest of the world it seems, has turned their back on me.  While part of me wants to be left alone when I don't feel good, part of me is hurt when the people I was there for in some of their darkest hours, have not been here for me in mine.  I don't know if it is pure selfishness or if they just don't know HOW to be there for me, but either way, it hurts.  It's pretty depressing to be stuck in your house day in and day out for months at a time when you are used to having a job, friends, etc.  Having a chronic invisible illness, I realize, isn't just hard on me, but also on the people I love.