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.

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

2006-2011

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 petfinder.com 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.

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

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."

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.

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 http://www.prettydisabled.com/ 

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.