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.

Wednesday, August 24, 2011

I'm Back Baby!!

I have been neglecting my blogging because I have really been going through some difficult times in my life.  I have been afraid to be completely candid and open about all of these situations because some things are simply not things I felt comfortable disclosing.  Since I didn't feel I could be completely honest and I was going to have to sugar-coat or omit a lot of my feelings and opinions, I decided there was no point in blogging.  If you aren't going to be honest, then why bother?  One of my friends, Sharon Harris, from the shirt company has a motto that says in part, "...staying silent never saves lives."  So instead of being embarrassed about my lupus symptoms and how they are impacting my life and the lives of everyone around me, and being ashamed of how having lupus has changed some of my relationships with people in my life, I need to TALK ABOUT IT (or blog about it in this case).  I'm sure there is someone else out there going through similar things who might be encouraged to read my blog and see that they are not alone. 

I also found my old blog that I stopped making entries in in 2008.  It was full of great stories and photos and it was also hilarious!  I spent the evening tonight reading my old blog and reminiscing with my daughter Katie.  I had forgotten some of those precious memories and it was great how I had chronicled our lives in words and pictures.  Katie wants me to have the whole blog printed and made into a book for the family to have because it covers a lot of family history, like a scrapbook online.  If anyone wants to check it out go to It's full of pictures and entertaining stories so if you need to laugh, it's great comedy relief.

So get ready world!  I'm going to start doing the same thing with this blog and write about all the hilarious things that go on in our crazy family and add the pictures that go with the stories.  I'm coming back with my no holds barred style of writing, so if you're easily offended by sometimes crass analogies, a few different shades of colorful language, or me writing about something you did to piss me off that may not show you in the best light (because I'm pissed)--then DON'T READ MY BLOG.  Everyone else, prepare to be entertained because the only thing I love more than being a smart ass is putting it in writing so everyone can laugh!

It's time for me to take my "night night medicine" so I'll leave you in suspense to wait for my old blog style to be unleashed again.  I've kept that dog on a leash long enough!

Peace Out!  XOXO 

Tuesday, May 3, 2011

Where Did April Go?

Holy cow I can't believe that it is already May!  Katie's birthday is Saturday and I haven't even made her invitations yet!  Yesterday I went with my mom to pick up her two new dogs she adopted from the vet.  They had both been fixed.  The black lab she named Izzy is so sweet and the Doberman that I picked out is named Moose.  He really likes me and I taught him how to sit in like five minutes yesterday! He is huge and strong and he is going to be staying with me for several months while he is treated for heartworms.  I have a feeling he is going to end up being my dog because he is going to get so bonded to me while I take care of him during his treatment time.  I just hope he gets along with Suzi and the ferrets and that he makes it through his treament okay.  I can't believe someone just dumped these beautiful dogs out to die when they are so sweet.  All either of them wants to do is sit in front of you and be petted and petted and petted.  I think they know we saved them and they are so starved for love.  As much as I spoil animals I know Moose is going to get plenty of love at my house.  My mom didn't really want him but I talked her into it because I just couldn't stand to think he was going to be put to sleep because he has heartworms.  She is scared of him because he is so big, so she wants me to train him and since I used to train dogs for therapy for the Humane Society years ago, I think I'll be able to do a good job with him.  Everyone says my dog Suzi is the most well behaved dog they have ever seen.  I even trained my ferrets.  I love animals and at one time wanted to work with animals, but now thanks to lupus, it diesn't look like I'll be working at anything but staying alive. :-(

I am in a lot of pain today.  It almost feels like it's going to rain or something.  It figures that the day I need to go to town and get stuff for Katie's party, I feel like staying in bed all day.  I haven't even ordered her cake!  I don't deserve Mother's Day this year...I've been so sick that I really haven't been that great of a mom.  Frozen dinners or drive thrus or grilled cheese have been the staple menus around here since I've been sick because I just can't spare the energy to do all the cooking and cleaning up the kitchen.  I don't remember seeing GUILT on the list of lupus symptoms, but it's sure on mine.

Sunday, May 1, 2011

Insensitive People are Very Hurtful

Last night I was up nearly all night in pain and feeling in general like crap physically, but the good news was that I was feeling happy for the first time in weeks because of rescuing those dogs.  Altruism gives me a natural high.  I feel really good psychologically when ever I feel that I have done something to make a positive difference in the world.  After weeks of a fairly debilitating depression, adopting those dogs with my parents was a huge pick me up.  But when it was time to go to sleep last night my throbbing kidneys and joints and head would not allow much more than a few cat naps here and there.  So when it was time to get up and get ready for church I was feeling awful.  I had an incredible migraine causing overwhelming nausea and for some reason even though my bladder felt ready to burst, I was unable to urinate.  This has happened to me before and I have been told that urine blockage is yet another trick in Lupus' bag, especially when you are having kidney involvement like I am.  It was sooo painful and I felt such an urge to go and nothing was happening!  I called my mom and told her I was in no shape to make it to church and asked her if she would let Katie (my 10 yr old daughter) ride to church with her so I could stay home and try to get rested and well enough to be able to teach my youth group tonight.  I spent the whole day resting and suffering with this awful migraine and waves of nausea sweeping over me. By the late afternoon it was obvious that I was not in any condition to go up to the church and run my youth group, so I called my sister because she teaches the younger class.  I asked her if she could just do a game night or a movie night with the kids at church because I was too sick to go teach my group.  She texts me back that Kaleb (my 2 yr old nephew) has a 105 degree fever and she is going to have to take him to the doctor so she isn't going to church either.  I knew better than to ask my mom for help because she had been working on homework for her doctorate classes and I'm sure she would have felt overwhelmed if I asked her.  So I called Mary, my co-commander for our AWANA group at church and explain the situation.  I told her our kids wouldn't be coming but she could maybe do a game or movie night for the other kids and she said she would.  Then I felt bad because I didn't want our kids to miss out on their Bible lesson for tonight so I texted Emi (my little sister) and told her she could send Montana and Maverik (my niece, 12 and nephew, 10) over to watch the movie The Prince of Egypt at my house so at least they can learn about Moses during what would have been AWANA time at church.  She sends the kids down and they come in and tell me that their mom sent them over to watch a Bible movie because I was too "sick" (she used air-quotes while rolling her eyes) to go to church.  Then Katie got offended because Emi was acting like she thought I was faking, so she told Emi that I really was sick and that this morning I was in a lot of pain because I was on the toilet trying to pee and it wouldn't come out. To which Emi responded, "Oh I feel so sympathetic for her," in a really sarcastic tone while rolling her eyes and throwing up air-quotes on the word "Sympathetic."  I am so tired of her attitude that my lupus is not real and that I am not really sick.  If I wasn't sick then why am I running to doctor appointments 2 and 3 times a week and having all kinds of tests coming back abnormal?  How is it even logical for her to think that I can fake these blood tests, urinalysis, x-rays, CT scans, ultrasounds, biopsies?  SHIT!  What would it take for her to stop treating me like some kind of liar in front of MY child and MY niece and nephews who adore me?  Why does she try to make me look bad in their eyes?  Is she so insecure that they love me that she has to try and create doubt in their minds about whether I am genuine or not?  I am so sick of her hurtful behavior and as much as I love her, she is making me not want to be around her.  If she wasn't my sister, I don't think I would choose her as a friend.  She doesn't even care about how sick I am or what I'm going through.  She doesn't even ask about my doctor appointments or anything.  The only time she calls me is when she wants me to take care of her kids or pick them up from someplace or take them someplace.  I have friends who call and check on me regularly, send me cards to cheer me up, total strangers I met on Twitter who offer support DAILY and I've never even met them face-to-face.  I think it is pretty sad that I can rely on strangers more than my own flesh and blood.  My mom and my sister should be my best friends, but their attitudes towards my illness have created a giant rift.  Every time they aren't there for me when I need to talk because I'm scared about the things lupus is doing to my body I feel so hurt and rejected.  Every time they make snide remarks about me not being able to work or having to spend a lot of time resting, it really hurts my feelings very deeply.  It makes me feel ganged up against, devalued, uncared for, not good enough, and most of all unwanted.  Since my life doesn't measure up to what they think it should be, they completely discount me.  What they don't realize is that I already feel disappointed in myself.  I feel like having lupus I have let down everyone in my life because now I can never be what I need to be to everyone.  I don't need them shoving it in my face constantly that I'm not as good as they are, and that I'll never be good enough no matter what I ever try to do.  My family has always been my whole life and now I find myself avoiding them more and more because I am so tired if being hurt by them.  My mom wraps her whole life around my sister and I can never have any time alone with my mom.  And if by chance I do get a moment alone with my mom she acts all distracted like her mind is elsewhere and I can tell she isn't even listening to what I say.  I feel so hurt and betrayed and rejected by the very people I should be able to count on the most.  When the three of us are together I can't even talk because they dominate the entire conversation and if I try to talk about myself I get cut off immediately because they don't want to hear it.  I live next door to my mom and dad and if it weren't for my daughter coming home from school everyday, I could die in this house and no one would even notice I was gone.  That's how important I am to my family.  My husband, daughter, and even my ex-husband treat me with more care and concern than my mom and sister.  This lupus shit is scary for me and I should be able to talk to my family about it, but that might take the spotlight off of them for a minute and we certainly can't have that happen. I'm pissed off that every time I'm sick my daughter gets smart ass remarks made to her against her own mother.  I'm pissed off that every time I call my mom she doesn't even answer her phone most of the time and if she does she is ignoring me to talk to whomever is in the room with her and when I catch her with a question and she stays silent I know I might as well have been talking to my dog.  But if I am over visiting my mom and Emi calls, she totally ignores me to talk to Emi until I finally give up and leave. SO I guess from now on I just am going to stop calling them and stop trying to share with them what is going on with me medically because clearly they don't give a shit and I am so sick of having my heart broken over and over waiting for them to think I'm valuable enough to give a damn about.  I'll just stop going over to visit and stop asking my mom to go shopping with me because she tells me no and then I find out she went with my sister instead on the same day!  I have totally isolated myself and they don't even check on me or seem to notice.  And people wonder why I'm so depressed.  I don't even want to live here anymore.  I wish I could sell this house and move far away because the only time they take an interest in me is when they want to criticize me or control me.  Maybe if I were out of sight and out of mind they'd forget I ever existed--I really already feel that way now.  When I die I want to be cremated and I want the inscription on my urn to say, "TOLD YOU I WAS SICK!"

Emotional Lift

As I've made obvious in my past several posts, my health has been rather on the crappy side, which has in turn resulted in my emotional state being down in the dumps.  This emotional state was been worsened by the fact that my husband has been working out of town for almost 3 weeks straight and my Mom's dog (which felt like my dog because we live on the same property and he pretty much lived on my porch) had to be put down when he was hit by a car and was too injured to save. 
His name was Bo and we raised him from a puppy.  He was a very mischievous and naughty boy, but he had a heart of gold and we all loved him (except for the days when we wanted to choke him for destroying anything he could get his mouth on!).  So when he died the whole family was sad and every day when I came home and he wasn't waiting to greet me on my porch, my daughter and I would cry.  My sister and her children cried every time they came over and he wasn't there to harass them as they got out of their car.  I'm pretty sure my dad even shed a very macho tear or two behind those dark sunglasses.  My mom who raised him from the time he was 6 weeks old really took it hard so my sister sent her flowers and I wrote her this poem which I am having made into a grave marker with the above photo on it in remembrance of our very naughty and very loved dog.
Goodbye Bo
Goodbye gentle golden eyes,
Goodbye prints of mammoth size.
Goodbye happy leaping greets,
Goodbye chewed up cushion seats.
Goodbye garden statue muncher,
Goodbye front porch floorboard luncher.
Goodbye manic squirrel pursuits,
And half-eaten children's rubber boots.
Goodbye swimming wet dog shakes,
Goodbye midnight barking wakes.
Goodbye friend who played with logs,
Chewed our cars and chased wild hogs.
Goodbye Bo, your life was short,
But lived like the most joyous sort.
Now you're in Heaven looking down,
Serving as an Angel's clown.
Chasing things down streets of gold,
Forever young and never old.

By: Annie Baker 4/16/11

That poem seemed to help everyone feel a little better because it reminded us all just what a comical dog he had been.  We all knew we wanted to get another dog for the farm too, because it just isn't the same to drive up and not be greeted by a big dog.  At first my parents discussed buying a puppy from a breeder.  I quickly talked them out of that.  I used to volunteer and train dogs with the Humane Society and I know that there are so many wonderful dogs at shelters waiting to be rescued and you can get an adult dog and skip that awful "puppy" stage where everything gets chewed up, pooped on, peed on, etc.  So I showed my parents how to use to see some dogs that were locally available, but since often times ALL the dogs they have aren't posted I suggested we take a trip to the shelter and see what kinds of dogs were there.  We also brought my little dog Suzi to make sure any new dog we found was going to be nice to her because we all share the same property.  My parents' home is on one end of the property and mine is on the other.  We also brought my daughter to make sure the prospective dogs would be good with kids. This is a picture of my little dog.

So, we all loaded up and went to the shelter.  When we got there, there weren't very many dogs and the lady that worked there told us that most of their dogs were at PetSmart for an adoption drive.  So after we walked through and made a mental note of a few possible dogs at the shelter, we headed out to PetSmart to see what other options were available.  As soon as we walked in the door my mom went straight to this very sweet and pretty black lab mix and she knew instantly that she wanted her.  She started talking to the shelter attendant about the dog the lady told her that if that dog did not get adopted today that she was going to be put down very soon because they can only keep them 90 days and they have had her since February.  The lady told my mom that another family had already paid the adoption fees so someone else could have her for free because they weren't able to take the dog in themselves, but they couldn't stand the idea that someone might not be able to pay the $105.00 adoption fee which would be leaving an incredibly sweet dog for dead.  The family that did that even bought toys, leashes, and a collar to give to whomever came along and was willing to take the dog.  That was such a sweet and generous act of kindness on the part of that family to be so concerned for a dog they couldn't even take in to make arrangements so another family could to save the dog's life! When things like that happen, it helps to renew my faith in mankind and it blesses my heart that everyone in the world is not so self absorbed and heartless as it sometimes feels like they are out in the world.  While mom had her eye on that dog, whose name is Izzy, I was immediately attracted to a cinnamon colored purebred Doberman in the back corner.  I had already been looking online for a Doberman to rescue but wasn't sure if I wanted to go through with the one I found because it was all the way in Daytona Beach, FL.  I owned a rescued Doberman years ago and he was the sweetest dog but my landlord at the time wouldn't let me keep him because he was scared of him (even though he had absolutely no reason to be scared because the dog was a gentle giant).  Dobermans, like pit bulls, get a bad wrap because of the way they get portrayed in the media as these vicious attack dogs, when in reality, dogs are going to have the temperament that their owner fosters in them in nearly every case.  This Doberman was sooo sweet and calm and loving.  I was in love at first sight.  We took him out of his cage and he is a BIG boy, probably 75-85 pounds and he went over to my 17 pound Suzi and sniffed her and then licked her on the head with a smile.  A little two year old boy came over and patted his head and the dog licked the top of the kid's head and licked his fingers and was so gentle and sweet to the toddler.  I told mom I wanted to get him but she was terrified of him because he was so big and she has always seen Dobermans portrayed as vicious.  Then I kept begging her to give him a chance and she saw how the dog was acting with all kinds of small breed dogs walking around him and under him and toddlers going over and hugging on him and I reassured her that if he was aggressive in any way we would have already seen a display by that point.  So she slowly warmed up to him and began to see what an angel he was and then she said we could adopt him too!  I was so excited because she had told me before we couldn't have a Doberman on the property because she thought they were too dangerous.  Then the shelter attendant told us he was positive for heartworms and that is why someone turned him in because they couldn't afford the treatment and no one wants to adopt him because of the same reason.  Heartworm treatment is very expensive for a big dog.  I asked the lady if the Humane Society would help with the treatment cost if we agreed to adopt the dog and care for him during his treatment time, which would mean 30 days in confinement and leash walking only because getting the dog excited during treatment causes the heart to pump blood faster and it can cause a clot with the dead heartworms making their way out of the system, which can be fatal.  The Humane Society agreed to pay for the treatment if we would adopt him because otherwise they would have to put him down because they didn't have a foster who could take care of him during the treatment time and no one wanted to deal with that to adopt him.  So I'm so excited that we saved two dogs from being killed and they are going to make great additions to our little farm!  I decided to name the Doberman Chopper because when Dobermans want to play they chop their teeth together at you when they get excited.  He is such a beautiful dog too.

So now while I'm sitting around the house feeling sick and miserable with this crappy lupus flare that we can't seem to get under control, I'll have a sick buddy to commiserate with.  The dogs are being spayed and neutered this weekend and we get to go and pick them up Monday afternoon and I can't wait.  My mom wants the Doberman to be her yard dog, but after he spends a month in my house and I get him trained he is clearly going to be my dog! LOL My dad said the way I treat my animals, I'll have the dog so spoiled he won't want anything to do with my mom, so she needs to plan on that dog being mine. HA HA  I think my dad is right!  I told mom she can visit Chopper when I take him outside.  LOL Now let's just pray that Chopper gets along with our ferrets, Fibbit and Woozle.  I'm going to have to be very careful with that introduction.

So I'm happy to report that I am in better spirits because of all this dog business even though my body is still refusing to get on the happy bandwagon with my mind.  I was telling my niece and nephews about the new dogs coming home Monday and they are all excited too.  Amazing how a couple of dogs can lift everyone's spirits!  Even Suzi is happy that she got to meet new friends today and be part of the screening process, because she is always going to be the top dog around here.

Saturday, April 30, 2011

Overwhelmed and Overtired

My trip to the doctor Thursday confirmed that my lupus is indeed rearing its ugly head and having a wild rumpus in my body.  It appears my kidneys, lungs, eyes, and possibly BRAIN are under attack.  I really didn't think my brain could be affected, but the truth is I have been having some pretty scary episodes in which I find myself confused, unable to think clearly, remember conversations, and unable to locate things (like my vehicle at Walmart last week).  My doctor has ordered a CT scan of my brain to see what's going on in there since I have a history of TIAs.  SO in addition to my crippling insomnia, I also am experiencing vision loss and excruciating flank pain.  Oh and did I mention my joints are killing me and my hands, legs and face keep swelling up?  My short term memory prevents me from remembering if I already mentioned that I look like the Michelin Man unless I stay in bed all day.  So now I have to go back to my nephrologist, ophthalmologist, pulmonologist, and neurologist to try to get this under control. My kidneys hurt so bad that I very nearly drove myself to the ER this morning at 4:00.  I don't know what they could do for me, but this pain is becoming unbearable.  My life is like a saga of medications, pain, exhaustion, and doctor appointments.  So forgive me if I'm a little bitchy and withdrawn for a while.  It's driving me insane that my house is messy because I have a ten year old who can't seem to figure out how to put anything away and I've been too exhausted to clean.  Usually my husband helps with that, but he has been working out of town for the past three weeks.  I'm also still upset because the weekend before Easter my mom's dog (who practically lived at my house because we live on the same property) got hit by a car and I had to call the neighbor to come over and shoot him because he was suffering and couldn't be transported to a vet in his condition.  I really love animals and even though that dog was a royal pain in my ass, I loved the big dummy.  It feels weird everytime I walk outside and he isn't on my porch. Well, I'm getting really sleepy because I barely slept at all because of the pain last night, so I am going to spare you from any further complaining on my part (for now).  I'm going to try to catch a few zzz's because I really need to go to town today to get the supplies I need for my youth group's Mother's Day projects we are making Sunday night.  And if I feel like I can stay awake long enough I really want to go see Water For Elephants because I recently read the book and it was AWESOME.  But my narcolepsy makes going to the movies usually end up being an expensive, uncomfortable nap.  :-P

Thursday, April 28, 2011

Avoidance is My MO

I admit I have been avoiding this blog like the plague.  I think for any blog to be interesting and helpful, it needs to be honest, wherein lies my problem.  Being raised to be the sweet, polite, independent, southern lady that I am expected to be presents a problem when it's time for me to get really honest about my feelings--especially if those feelings might make others uncomfortable or expose a vulnerability in myself that makes me look weak or as if I might inconvenience others by needing support or assistance from them.  So to avoid the awkwardness, shame, or potential to be dishonest so as not to be inconvenient, I just avoid everyone.  I don't answer the phone, I don't leave my house, I limit social networking contact to surface "Hellos" and then people become offended thinking I am being a snob.  Anyone who knows me well, knows I am far from snobbish.  The real problem is that I am depressed. Really, really depressed.  I thought I was happy to get my lupus diagnosis, because at first it was such a relief just to have an answer for the years of illness.  But now as I move further from my diagnosis date, the less happy I am to have lupus as the answer.  I keep desperately trying to find other things that could be causing my flare-up symptoms, because maybe I don't really have lupus.  Maybe I won't really get sick everytime I really get active on a wekend with my daughter and niece and nephews--but then I do.  And I read through my lupus literature and books and whatever symptom I am experiencing is spelled out right there in plain English, flying right in the face of my denial.  I am experiencing such depression over being sick so often, that it's getting harder and harder for me to paste on that southern charm smile and face the world and saying, "Fine, thank you." When people ask me how I am.  I find myself crying a lot.  I'm grieving over the life I worked so hard to build for myself only to have it stolen away by lupus.  I'm grieving over not being able to be the wife and mom that I expect myself to be.  I don't even want to know how many years of therapy my daughter is going to need for having to grow up with a mom who is constantly sick and in pain.  My once spotless house is getting messier by the day and I can't keep up with the housework.  Just taking showers and getting to all my doctor appointments is exhausting, not to mention trying to get Katie to all her after school activities.  I thought I was starting to feel better a few weeks ago and then, BAM my kidneys are spilling protein like crazy, legs swelling like balloons, my pain levels are through the roof, the inflammation in my eyes is causing vision issues, my fatigue could put Sleeping Beauty to shame, and now I'm getting fluid on my lungs to boot.  So then starts the steroid therapy--like I'm not fat enough already.  I have another appointment tomorrow (well actually later today since it's like 2:15 AM) to see what the doctor wants to do with me since the steroids aren't doing anything but making me eat, which is a little of a plus because I have been too nauseated to even smell food for the past several weeks. I feel so guilty to be depressed when I know people out there have it much worse than I can even imagine, but I can't exactly control being depressed.  I am also getting scared because I feel like I am starting to lose my mind.  I can't ever remember anything that isn't written down.  I ask the same questions repeatedly throughout the day and don't remember having already asked them until someone points it out.  I forget entire conversations sometimes.  Last Saturday I went to Walmart, which was a huge exhausting mistake, but I didn't have anyone who could help me so I had to just do it myself.  By the time I got out of the store, I was in pain, sweaty, and exhausted and here comes the kicker...I couldn't find my car.  I had no clue where it was and as panic set in, I couldn't even remember what the hell it looks like!  I spent a half hour wandering up and down the parking lot aisles pressing the panic button on my keychain trying to set off the alarm on my car so I could locate it.  I have never had that happen!  It was a terrifying and embarrassing experience and now I'm scared to go anywhere by myself because who knows what I might forget next time?! Since my husband works out of state, I really have no choice but to do things and go places by myself because my mom and my sister are way too busy with their lives to help me out. I came home and read my books about lupus and apparantly my memory problem is also caused by lupus.  There are entire chapters dedicated to that.  The more I'm learning to live with lupus, the more powerless I feel.  I don't like to feel like I'm at the mercy of anything or anyone and yet here I am, with a disease that is controlling my life and I am unable to work to even provide for myself and my daughter because of it.  This is not the life I planned.  I want to still be able to use my education, talents, and passions to do SOMETHING that matters and preferably makes money.  But for now, I guess I'll just have to settle for being extremely depressed and hiding from the world so I don't have to burden them with my misery.  No one wants to hang out with a "Debbie-Downer."

Wednesday, March 9, 2011

Lupus Makes History Today

Today, the FDA has approved the first drug for systemic lupus treatment in 56 years, Benlysta!  This is the first drug ever designed specifically for the treatment of systemic lupus.  As I am new in my treatment I am still learning about available treatments and I am unsure what impact Benlysta will have on me as an individual, but I feel certain it is good news for the systemic lupus community as a whole.  I can't wait to see my rheumatologist again to ask about Benlysta and what it could do for me.  Right now I am on Plaquenil therapy and the results have been noticable, but I think they should be better.  I think I should feel better and have more energy and even less inflammation. 

Thanks to one of my biggest supporters through my journey to a diagnosis and afterward, Tiffany, I now believe that I don't have to be a victim of lupus, I can be someone who lives with lupus instead.  I met her on Twitter @TiffanyAndLupus and she sent me all kinds of material to help educate myself and my family after I was diagnoised December 2010.  For me, the emotional pain of having a family that had no compassion for my situation was almost as bad as the physical pain and fatigue that I was experiencing.  I started seeking out other people online who have lupus and before long I had connected with many fabulous people who gave me the support I was so lacking at home.  They not only offered moral support, but had suggestions on how to find rheumatologists, medications that were helpful, and lifestyle suggestions for coping with chronic illness. 

If you're reading this and you have a chronic illness, don't try to go through it alone.  Find a support group, or do like I did and build your own.  A support network is very important for anyone who is going through a tough time, whether it's psychological, physical, or emotional, humans need other humans to connect with that understand their pain.  Thanks to all my wonderful friends who have shown me such support. 

Now I'm going to go to research Benlysta and see what I can figure out about it's benefits and side effects.

Monday, March 7, 2011

Long Time, No Blog

Since my last insomnia-induced crazy blog entry, I have not only continued to suffer from insomnia, but have also had some sick family members to take care of and a million other things that have kept me from blogging.  I think my medicine is starting to really work for me now, so my joint pain and rashes are getting to be less bothersome, but this pesky "unable to sleep even if I take enough sedatives to put a rhino down" pattern is really starting to get to me.  It's hard to say if I REALLY feel better because I am constantly in a sleep-deprived state.

I have had several AH-HA moments since I last wrote.  Some good and some sad.  The good have come from some members of my online Lupus support people.  My Twitter Friend Sherri Blaise shared her empowering story about her road with Lupus and how she has overcome the obstacles to be a happy, healthy, business woman.  You should check out her new business site where she sells shirts that empower women with disabilities with logos that say "WARRIOR" or "DIVA" and have an assortment of "ribbon colors" for various causes, such as Lupus, Breast Cancer, Etc.  The site is 

I have also heard of several people in their late 20s and early 30s dying from lupus related illnesses.  That was a shocker, because even though I knew it could be deadly, I never actually knew anyone who had died from it--especially not young people.  It was sobering to hear of their passings and reminded me that lupus is nothing to play with.  It's hard to learn to walk the balance between taking lupus seriously and taking it too seriously, as a recently diagnosed person.  My heart and prayers go out to the families of those ladies.

My husband is home tonight after being away at work, so I'm keeping this one short and sweet.  Give some love to my girl Sherri, and check out her site, and remember to be patient and loving with your chronically ill friends (like me) because you never know what tomorrow holds for them.

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.