Sunday, November 20, 2011


I cannot wake up. I never sleep this much and no matter what I do I'm so sleepy. I wake up from 10hrs of sleep and all I want to do after I eat my breakfast is go back to sleep. So, I finally give in and sleep for 3 more hours. Then wait for myself to get sleepy again. I am on prednisone right now so it seems wierd that I'm SO sleepy! It's frustrating and not the relaxing sleep that people might think. I'm just really frustrated today and want to cry, honestly. At this point, I don't even remember what it is like to be normal. Kind of like when someone has a loved one to die and after a period of time it's hard to see that person's face in their mind. .  That's how I feel. I don't remember what good feels or looks like. I just put on a front to people lately. I don't want to explain it or anything. That's fine by me. I don't have the energy to explain it or look at the puzzled face people make when I do explain it. I just feel like I'm getting sicker every day and there's nothing that I can do about it.

Thursday, November 10, 2011

My Flare Lady

If there is one thing I cannot stand about this disease, it's the unpredictability.  Two weeks ago I felt pretty darn good, but now I'm fighting a flare. Now that I've had a name for my group of symptoms for a little over a year, I have started to know how to spot a flare.
  • increased, almost exaggerated fatigue - not limited to sleepiness
 It's comparable to when you've had a bad cold/sinus infection.  Even the couch isn't comfortable enough for me when I feel this type of fatigue. I have to have my bed and my favorite blanket.  "Sicky Blanket", as Zach and I have named it, is a cloud from heaven that I sleep with every night now. It's actually the lightest weight option of down comforters that Macy's sells. So while it provides decent warmth, it's not stuffy. My Lupies should all have one. 
  • burning in muscles
  • body aches (comparable to the flu or a bad cold)
  • stiff painful joints
  • more recognizable butterfly rash on my face
     The rash actually comes and goes. I always have a hint of it, even with makeup, but when I really feel awful it's easier to see.

So when I see this all start to mission is clear & I know what has to be done!  This is just what gets me through it, and I'm sure it's different with everyone. 
  • Prednisone - I hate it, but it helps with the burning muscles and sloooowwwly gives me energy after taking it for about a week or so.
  • A full stock of all my medicines and vitamins -- nothing is worse than having to call my doctor, wait on the medicine to get called in (or have to go to the doctor), and go pick it up when I feel this sick. 
  • Warm baths!! Honestly, it's hard to even muster enough energy to bathe myself during a flare, but if I can scrape myself off of the couch and just sit in the tub, it helps me big time. This isn't clinical by any means, but I feels like it warms my joints.  It definitely eases my muscles, and it feels good to wash the "icky" feeling of being sick off of me.
  • Sleep, sleep, sleep
  • Movies -- they are a great escape! Or even a show that you haven't ever watched, or could watch the seasons of.  We have Netflix and I will just log in and watch episodes of Frasier or I pick movies to watch instantly on my computer in bed.
  • Indulgence. My indulgence of choice? ...candy. Come on, sugar is a treat.. and if you're feeling like crud, you deserve it. I wouldn't recommend going overboard though! Most Lupies are on Prednisone, it is a steroid, so it already makes you gain weight -- don't encourage it!
  • Get over it. I'm trying hard not to get mad at myself for not feeling good. I just have to get over it. I used to feel guilty if I had to say no to someone or something.  I love my family and friends and want to make it to everything and spend time with everyone, but when I'm in a flare I will not be able to.  Feeling sick is bad enough without feeling guilty or placing blame on myself for a disease I cannot control. If someone loves me, they will understand and not take it personally. It helps weed out the good friends from the ones that can kiss my butt. I know it sounds silly, but this step is the hardest for me.
There are so many more "tips and tricks", but I think these things are the top of my list.  I'm going to do another post in the next few days! LuLu Beauty: Tips & Tricks... watch for it! You don't even have to have Lupus to appreciate some of these time and energy savers!

Friday, October 7, 2011

Of course!

I was denied, of course. I don't mean for an American Express card, though I'd probably have a better chance with them. (maybe not.. doesn't think very highly of my credit rating) I mean with disability. Denied.
Yes, I know it happens to everyone the first time, but dang. Really?! I had a lawyer, I've gone to Mayo Clinic! They are no joke there. Those doctors don't even wear lab coats, they wear three piece suits! I will be honest.  When we are scrounging up the cash to make our mortgage payment, keep the lights on, and pay our car semi-regularly I have this voice in my head that tells me to call the disability adjuster and let him have it.  I understand that people abuse the system and they want to make sure I'm not capable of working for at least a year, but during that year, we can lose everything I DID work for and my husband still does work for.  I went to work through shingles, back pain, neck pain, rashes, brain lesions, infections, miscarriages, you name it... I should be able to keep the house I pushed through all of that to keep.
Ok, rant over. I'm pretending I don't have Lupus for awhile. Sometimes it's easier that way. I know I do have it.. it won't go away. I just want to ignore it until I absolutely have to think of it. (which is all the time..) This ignoring thing only works until the next ailment pops up.  Since I just took pain medicine, I can keep this up for about 4 more hours. Ahhhhhhh :)

Tuesday, August 9, 2011

Back in black

Okay, so it's been awhile since I've posted a blog entry! I feel bad.. like I abandoned ship!  I went on vacay and guess who didn't get burned? Me! Well, maybe a little, but not like I thought I would.  I wore big time sunscreen every day and still got very tan. Not a crazy red burn like I thought I'd get.  We had a good time, but I had to pace myself.  I swam in the ocean and all of the salt in the air was fabulous for my Lupus.  I want to move so badly! Wish that hubby could work close to the beach.. but never say never.  I had waited for my doctor to fix my prescription for pain and he came through and did.  He put me on the patch again and it has made a big difference.  I started the patch before I went to the beach and it really did help as far as continuous relief. I don't wake up with leg pain like I used to.  The Kadian was not working very well anymore and it made me jittery.  Some people say the patch is really hard to get off of, but I've gotten off of it a few times in the past (at my doc's instruction of course) and it wasn't hard because of how he walks you down.  People's bodies just react differently I guess.
If you're one of my Memphis readers then I hope that you're indoors relaxing or at least if your outdoors a lot that you're staying cool! The high today was 90 and it was awesome.  Especially since the high was 109 a few days ago. That was miserable for a Lupie! The heat makes me so nauseated and I found my fatigue levels were much higher than they usually are.  The beach didn't bother me, but the Memphis weather makes me worse.  Why is that?  I guess since we are missing the component of salt in the air and that nice beach breeze that is constantly blowing.  My hubby's done with dinner and it's smelling SO yummy--- so I'm going to wrap it up.  By the way .. I am considering adding a new page to my blog that is not Lupus related.  Just stuff I would like to talk about (my likes, dislikes, obsessions, addictions, and random musings.. ) More to come soon!

Wednesday, July 13, 2011

Appointments over -- waiting game

I just got done with two appointments for SSDI.  One was a mental health exam and the other was a regular medical examination.  I love how it took me almost 4 years to be diagnosed with Lupus, 23 doctors, and a photo-journal of symptoms.. but 30 minutes with a doctor who is not specialized in treating Lupus is supposed to determine whether or not I'm "disabled".  I understand the process because of the type of work I used to do.  Work Comp utilization review surely opens your eyes to the world of insurance and disability standards. 
(Utilization Review "UR" reviews doctor's recommendations according to a set of medical bibliographies and determines whether the prescribed treatment is congruent with the set of peer reviewed standards for the type of injury. No I didn't look up that definition -- yeah.. it's complicated to say the least.. but interesting)
The mental health appointment was easy and the lady evaluated me based on a written questionnaire and verbal tests.  Everyone knows I'm crazy, so if she declares me officially nuts will you really be shocked?
The physical one makes me nervous because so many doctors were never able to tell me what was wrong with me and some didn't even believe me.  With Lupus, most of the time you look normal.
 ---There is a really cool website that discusses a few "invisible illnesses and sheds a comical light on having them. You should check it out!--
 The only visible thing that did work to my advantage was my red skin! I hate it when people notice it and make comments, except for this time.  My skin usually has some type of a red tint to it.  When I was younger it wasn't as noticeable, but now it looks like I'm getting over a slight sunburn- even if I haven't been exposed to the sun that much. Well, she noticed my red skin and touched my arms.  She commented that it wasn't warm to the touch and asked me why I was red.  Sign #1 that this MD wasn't familiar with Lupus!  I told her why.  She then observed my knuckles being red and said that my back was too when she lifted up my shirt to listen to my breathing.  Later in the visit she had to move my arms for something and she commented that they were very warm now and redder (DUH!!!)  I informed her that flourescent lighting burns me because of ...... ....wait for it.... LUPUS.  If anything, she got a lesson in Lupie!  So, say a prayer for me.  I hope my SSDI gets approved.  If not, I will just appeal it and keep trying.  I hope all is well for everyone.  Comment me!! Love to my Lupies!

Wednesday, June 22, 2011

Woop Woop! I love Britney's new vid!

I'm pretty sure the guy in the video with her is the guy that plays in a lot of the Chapelle Show skits. My favorite being Pop Copy. This is so good. Love Brit's boots! I have a pair kind of like that. Too bad I wont be in town or near Nashville for her concert. I will be at the beach. I don't know if it would be the same though because I've seen it from the front row before! If you don't know the story of how Allison and I got moved to the front row at Britney two years ago then it's a story to hear for sure. I will have to post it sometime! Zach and Wes (Allison's hubby) groan whenever we tell it to people or recount the event with one another... but it was just so darn cool. Anyhoo... enjoy my Britney Jean!

Tuesday, June 21, 2011


The past 4 or 5 months have gotten me thinking about the frequency in which I have flares.  Especially now coming out of one that's been a few days long.  They are starting to be every other week.  Maybe 2 weeks in between. Flares, for me, include excessive and unexplainable fatigue, pain and aching all over, and tummy troubles.  If it gets really bad I start getting shingles.  My kidneys act up as well.  Steroids pull me out of it most of the time, but I also hate the way steroids make me feel! Unfortunately, I think I'm going to have to start treating for it again.  I've only been treating it symptomatically (only the symptoms) with certain medications, but it's not enough.  I'm tired of the ups and downs! I wasn't treating my Lupus because we have been trying to get pregnant for over 4 years, since 2007.  It's just wearing me down emotionally as well as physically.  I will respectfully ask that my fertility issues aren't discussed at all.  It's a very touchy subject.  I'm sure that your friends did get pregnant after they adopted.. or when they "quit trying", but we have tried it all and I'm not up to hearing any more of those stories.  I love all my friends and family who try to comfort me though ! I know it's hard to know what to say.  BUT....
 We are preparing to dive into the adoption process, though and I'm really excited about it. We have always wanted to adopt very badly and hopefully we can make this dream a reality!  I think I just need to decide when and what treatment I would like to pursue.  I know my options and am very curious about Benlysta, the new Lupus drug.  It's the first one created for just Lupus in 55 years! Can you believe that?  It's IV and you do it once per month.  Maybe insurance would pay for it, but I'm not sure.  Like I said, I will have to look into it.  Well I'm very tired so I think I'm going to rest.  Hope your week is going lovely!

Saturday, June 18, 2011

Cute or not?

First Kiss! Cute Kids Kissing Video Goes Viral!

This is cute to me, but I think Zach would've gotten a little ticked off if his little girl
did this! I might have to tell him to get over it because kids will be kids! Any opinions?
The little boy is thrilled! LOL Aren't they always when a girl makes the first move?!

Tuesday, June 14, 2011

Zach = broken

So my husband has been walking around with a broken foot.  He's got a huge tolerance for pain because he was exposed to a lot of it as a child (not from his adoptive parents -- just so you know--).  So he has been working 50 plus hours on his feet.  I didn't know what was wrong with his foot.  I mean I knew he hurt it, but he never acted like he was in extreme pain and it was looking better and he kept saying it felt better.  Well, the reason it felt better was because it was numb! Poor baby.  He's currently in a pain med coma on the loveseat.  I will have to spoil him since he's always taking care of me!

Sunday, June 12, 2011


18th nap today!

Sunday morning coming down

I will give a Chuck E. Cheese token to someone who knows what my title is referencing. :)

Have you ever tried these?
They are so flippin good AND they make you feel good too.  The ginger in the one on the left helps with bouts of nausea, the peppermint helps tummy issues, and they both have very soothing aromas.  Also, if you're looking to lower blood sugar this is a fab way to do it.  It's helped me.  The one with the cinnamon in it goes towards the 2tsp per day that helps lower your blood sugar. 

This past week I have been VERY paranoid about a fly that has been getting into the house.  I know, I know.. it's not the same fly, but there is one every day that comes barreling through the door as I'm letting the dogs back in from outside.  Why am I paranoid? Allison (the bestie you see to your right) will know why. . and now you will too! eeeek! high school we had to read this poem by Emily Dickinson
I heard a fly buzz when I died;
      The stillness round my form
Was like the stillness in the air
      Between the heaves of storm.
The eyes beside had wrung them dry,
      And breaths were gathering sure
For that last onset, when the king
      Be witnessed in his power.
I willed my keepsakes, signed away
      What portion of me I
Could make assignable,-and then
      There interposed a fly,
With blue, uncertain, stumbling buzz,
      Between the light and me;
And then the windows failed, and then
      I could not see to see.

Morbid, huh? *shivers*
So yeah, I'm a little creeped out when I hear a fly buzzing around me.  Allison and I were in Chick fil A the other night and there were about 10 flies circling around.  We both looked at each other and said our last goodbyes.
Lupus is alright today.  Not full on energetic, but I'm not bed ridden either.  So that's awesome.
I hope you're having a good Sunday!

P.s. My title is a Johnny Cash song

Thursday, June 9, 2011


I'm too sick to go to the doc.  That's pretty sad.  I had to go to the doctor on Tuesday to get some of my medicines refilled, but my little Holly had a seizure.  She is okay now and they were able to get me rescheduled for today at 1:15.  I'd felt fine all day yesterday (besides this 100 degree heat and humidity!), but today I just couldn't get ready.  I give myself a lot of time to get ready to go somewhere because it takes me twice as long as it used to.  I was so tired by the time I had to put clothes on that I had to lay down on the bed.  I kept trying to get up and put my clothes on, but I was so tired I just couldn't do it.  Of course at this point I was hot and sweaty and I hadn't even blow dried my hair b/c it just makes me even hotter.  I couldn't do it.  Some days it's not a problem and I can get ready with no issues.  What am I supposed to do when I need my medicine? That's just so frustrating to me. I just have to tough it out until I can see my doctors.  I feel like having my insides eaten by this stupid disease is "toughing it out" enough, but I guess not.  Guilt sets in when I begin to think that way because I know so many have it much worse.
  A few minutes after laying down I called the nurse at my doc's office and left her a message and explaining to her that the heat combined with my Lupus prevented me from making it to my appointment.  Hopefully they can work with me on this.  It gets me upset sometimes that even the simplest things are interrupted.

Tuesday, June 7, 2011

Are vampires still in style?

For the last few years vampires have been "in", but I must say, avoiding the sun is difficult unless you truly are sleeping during the daytime!  I know that with summertime comes the big photosensitivity (abnormal sensitivity to light) issue.  If you don't have Lupus or don't know much about it, 70-90 percent of people with Lupus are photosensitive and can only be in the sun for very short periods of time without a high SPF sunscreen and/or protective clothing.  Last summer I wasn't completely sure about the Lupus diagnosis and it really hadn't sunk in yet so I didn't protect myself like I have this year.  We had an above ground pool then and I would go swimming without worrying too much about photosensitivity (let's shorten this to photosens, ok?).  It was not that bad with at least an SPF 30 as long as I stayed cool in the water on my float.  Throughout the past year though, I have been getting more sensitive to the sun and heat.  I don't know which one affects me the most though.  It's a little like the whole "which came first, the chicken or the egg?" discussion.  I know that the heat is overwhelming here mostly because of the humidity.  Today there is a weather advisory warning the "normal people" to limit outside exposure.  So with Lupies I'm guessing we need to stay away from windows and wear an Spf 50 indoors just in case a ray of light gets into our home! Ha-ha, I'm joking --- kind of!  I don't take any chances.  My arms were just fine today until I opened the door for my doggies to go outside and sure enough I got a burn on my right arm.  I didn't have on sunscreen because I was indoors! Go figure.    There are some things I can do to prevent this.. but it's very time consuming. .  * post has been edited for privacy and legal reasons (my disability claim)*

Some people are more sun sensitive than others and I think that it depends on how advanced your disease is -- but don't quote me on that. It's dissapointing sometimes that I can't be in the sun as much or like I used to. I LIVE for the beach and crave it.  My friends and I used to joke about giving each other "a shot of the beach!"  We'd do a motion like we were giving each other a flu shot or something and say it was a shot of the beach.  Maybe it's because I'm a Pisces, which is the sign of the fish and a water sign, that I'm drawn to the ocean.  I have a Pisces and Cancer tattoo on the inside of my ankle.  (it's small.. i don't notice it until someone asks me about my "dollar sign tattoo")

See, doesn't it look like a $ sign?  It doesn't matter to me what anyone else thinks it is because I know what it means. Although, the people that think it's a dollar sign probably think I'm extremely shallow. lol
I hope everyone is having a great week.  To my fellow vampires, I hope you're feeling good! Be sure to rest and take care of yourself (sunscreen!).

P.S. This stuff rules

Sunday, May 29, 2011

I don't do mornings

Mornings with Lupus are a wierd time.  #1 they are not literal mornings.. I mean, 11AM is barely morning, but it is for me at least 2 days per week.  A lot of times, I stay up late sometimes because the later it is in the day, the better I feel.  When I wake up I make my favorite coffee - thanks Wes Bennett for getting me hooked on Ugly Mug-- eat some cereal, and lay on the couch for awhile just trying to wipe the fog from my brain. I know I should get up and move around, but I'm in pain when I first wake up.  It's a double edged sword.  Wake up by moving and showering, but cause more pain in the process. Rawwr.. what do I do?
my baby Holly - professional growler

I'm beginning to think that maybe it's the medicines I have to take at night.  Now that I'm typing this it makes me want to rearrange my medicine schedule. If you read my first post, you know that I take enough medicine to successfully put an elephant in a deep sleep! So here we go: 
  • Flexeril , been on this since 2007 and it was prescribed to take at bedtime. This medicine keeps my muscles from spasming the next day and it helps you get REM sleep (rapid eye movement sleep is the deepest form of sleep that people with Fibromyalgia and Lupus don't usually get. Controls pain response, memory function, and nervous system development)
  • Neurontin , been on since 2010, this is to keep my legs from hurting me at night and it helps with nerve pain.  It's an anti-seizure medicine that aids in nerve pain reduction.
  • Lexapro to replenish my serotonin that I lose from the lack of REM sleep I miss even with the Flexeril.  This one helps me stay remotely sane!
  • Ambien so I can fall asleep and stay that way. Surprisingly this one doesn't give me a hangover, which I guess is the reason that doctors prescribe it so much. I resisted taking a sleeping pill for a very long time, but there's just nothing like a good nights sleep.
 I don't know how to move it around so my mornings aren't like a painful hangover.  My doctors have been tweaking this combo for a year and they seemed pleased with it.  I am not sure I am.  I try to get going, but it's a bit like trying to run in a swimming pool.  It's just very difficult and I have a lot of pain that radiates through my body for the first two hours that I'm awake no matter how early or late I wake up.  When I finally do get going, I'm okay.  Some days I just give up though.  I get tired of fighting it.  This is probably the main reason why I cannot work, because I'm so tired all the time.  If you have Lupus and know how to prevent this, comment me or email me! The sun is shining, the birds are chirping, and I feel like I could sleep all day and all night and have no desire to leave the couch. I want that to change!

Around 2 I peeled myself off of the couch and tried to get moving.  Our floors are light colored laminate and I love them, but they are very difficult to keep clean.  I swept the floors and then ate some lunch. 
Hubby got home from work and I kept dropping things with my right hand so I had to sit down.  I guess I just have to pace myself.  My right hand was just not functioning for some reason! It's okay now, but I had to come in and make myself some Cinnamon, Mint, and Rose Tea.  I just started drinking this and there is something about it that makes you feel so calm and serene.  I love it and am addicted! I'm glad it's helping because we have plans with friends tonight and I don't want to have to sit in time-out here at home.  It's just dinner, but still you wouldn't believe the hassle unless you're a Lupie.  Have a good holiday weekend!


Zach and I are watching the movie Fun with Dick and Jane.  It's hysterical because we've been there.  We are actually still there!  Where is "there" you ask? It's a little place called flat broke, yall!
Ok.. back to the movie... Copy and paste moment coming up...
"Dick (Jim Carrey) and Jane (Téa Leoni) are in love and living the American dream -- until one day it becomes an American nightmare.
When the company Dick works for becomes involved in an Enron-like scandal and he is confronted with the prospect of losing everything, Dick and Jane are forced to bag, borrow and steal to get it all back."

This part is where Dick finally has a meltdown...

Too funny, right? I had a meldown like this on Friday! I wasn't on a bar or making fun of someone's awful toupe', but it was definitely not my finest moment. I get sick of always having to work so hard just to stay well and not go broke in the process!

Thursday, May 19, 2011

Shopping with LuLu

Hello my name is Whitney and I'm a shop-a-holic.  The truth is, I'm not anymore! Before stupid Lupus I would shop til I dropped.  Now if I shop, I am SURE to drop a lot sooner. Shopping hurts. Yes, I'm serious..physically hurts.  Exhibit A:
As you can see, within about 15 mintues my feet retain massive amounts of heat, swell up, and begin to resemble those of an Oompa Loompa! I won't even get into the sweating.  I sweat like crazy sometimes and then other times I'm fine. I know all of this is gross, but it's the truth! I promised to be open and I think this is pretty darn open.
Here's my foot now that I'm home and comfy on the couch. I take pictures of my symptoms for my doctor (because my body can't do these tricks on command), especially this particular one, and no doctors have much to say about it.  I'm guessing circulation issues or APS (Antiphospholipid Syndrome).  Most people with Lupus have APS Click for info on APS from the Mayo Clinic website - safe site.  I have it and sometmes aspirin makes it better.  Other times... I tough it out and prop my feet up when I get home.
Zach and I really enjoyed one another's company tonight.  We walked and talked and tried on clothes.  He wanted some jeans but never bought a pair.  He hates spending money on himself and I cannot talk him into it.  I might go back and get the jeans he liked so much.  He works so hard & deserves them! I tried on several dresses to possibly wear to a couples wedding shower this weekend.  We got the couple -------- (deleted until after shower.. just in case) at Macy's.  Very nice.  Now that I'm home I will go wash my own face with my (deleted until after shower) and get some rest. :)  Goodnight my Lupies. ((hugs))

Monday, May 16, 2011

Second Post Ever!

If this is the first time you're reading my blog then I encourage you to read my first post of the blog.  You can click on it to the right of the page under Popular Posts.. it's called "Are you Afraid of the Big Bad Wolf? Me too."
Or you can scroll down and read it below this full post. It explains the reason for this blog and a little about my journey. Welcome!!! :)

Today has been a wild day! Literally.. like a barnyard.  Mainly because I awoke in the middle of the night to something squealing outside.  Upon inspection, my best friend and I discovered a chicken, a baby rooster, a duck, two rabbits, and 5 pomeranians in the backyard of my neighbor.  I knew something had been going on because of the strange noises, but I did NOT expect THAT!!!  I just don't think it's fair that all of it is in a makeshift chicken coop right up against my fence.  My bedroom window is less than 50 feet away from it. There's also a kiddie pool that looks like it's filled with mud.  The animals are not kept in good conditions, which hurts my heart. I spoke with someone in my city ordinance office and since I live in a very small city I think he has already been to my neighbor's house or he will be there tomorrow.  Fingers crossed!! If not I will get an early start tomorrow morning thanks to a baby rooster with an obvious pituitary gland malformation. (future underground cockfighter?)
I have had reservations about sounding like a complainer or a baby in this blog... but then I have to remind myself it's truly for the person who might have Lupus or is going through what I went through for years. Also I hope that if someone who has Lupus reads this that they will not feel so alone.  It's still new for me to tell these things to a lot of people and I'm scared; but I'm going to do it!  So I'm still typing and I'm still going to be putting all my symptoms here! No worries.  So here we go!!
My Lupus has been quite annoying the past 24hrs. Back pain is in full force, I am so tired from so little exhertion. The most annoying thing is that my face is on fire today and it was a little last night.  I'm not sure what's going on with it.  I'm guessing it's from inflammation.  So to stop that from happening I have to take some Prednisone (corticosteroid).  I am so tired of Prednisone.  My heart is beating fast from it and I just feel so tense (Roid Rage?!) My stomach gets a little messed up too so I had to take care of that. (won't go into that!)
It get's old having to put on a ton of sunscreen to step outside for one minute and take pictures of your neighbor's chicken coop! Even if I wear a hat and sunscreen I get this crap. My face still gets red and it's hot all over. It feels like a terrible sunburn and then it will go away for a few hours.  That is what is so bizarre to me.  The red spot below goes away after like 2 hrs and my skin looks normal. Right now it's easing up since I took the Prednisone, but now I've traded a red face for the Prednisone side-effects.  The red spot is almost gone and my face is borderline pale.  I don't feel good at all today, honestly.  Flu-like symptoms and I can tell Fibro is going strong (I have Fibromyalgia too-- as do most peeps who have Lupus) As you know, I said I would include pictures and I am.  This is hard for me to do because I'm not the type to let people see me without ANY makeup on, but I will do it for YOU.
Yeah it's not sunburn, it's just hot and annoying

See how the skin around it looks normal ,but the area itself is really well defined and red?  I wish I knew how to deal with this, but I don't.  If you do, leave me a comment! I usually either get a steroid cream and put it on there and hope it calms it down or I take aspirin since it's an NSAID.  I've had moderate success with both. Well, actually I'd say mild success.  My house is an igloo because of it! Zach (husband) has adapted qutie well to the sub-zero temps, though.  I would L-O-V-E for someone to help me make this go away! On my other posts you can see I get it on my arm too. 
One thing I didn't really touch on in my first post is a symptom that embarrases me quite a bit.  I'm sure that we all lose things and aren't organized 100% of the time, but I have a very bad memory now.  At the beginning of the week I will put my meds into a little container (yes the ones with the days of the week on it that you've probably seen in your grandmother's purse. *eye roll* I know..) and last night I couldn't remember where one of my medications was.  I tore the house up and down looking for it and cursing myself the whole time.  I can't remember things at all.  I will stop in the middle of talking and just have to come back to it later.  I did that to my dad the other night and felt so stupid.  I believe the memory and cognitive impairments I have are from a medicine that I was prescribed before I was diagnosed with Lupus.  It's called Enbrel and it was an injection I'd give myself once/week.  I'm sure it's lovely for most people with RA or AS, but it ate up my brain.  Literally I woke up unable to feel my face, walk straight, talk normally.. and it scared the crap out of me.  I won't go into full detail because that would probably crash the bandwidth of this site if I did, but let's just say that the lesions have healed.  I was told they will always be there though, and can come back at any time.  Every time I forget mid sentence what I was saying or I tear my house apart looking for something I'm terrified that it's getting worse.  I was misdiagnosed and treated for a disease that I didn't have.  This reason alone should make me want to scream from the mountaintops that Lupus needs to be pushed into the forefront when it comes to physicians being educated and research development.  I can't get those 6 months back.  When the feeling started coming back in my face it was excruciating.  I was so angry and I wanted to do something about it, but I just had to let it go. That doctor is now retired. :)
  Ok, well I'm done for now -- getting sleepy and might take advantage of the quiet and take a nap. Of course as I type that I hear a chicken squawk....ahhh!

Sunday, May 15, 2011

Are you afraid of the big bad wolf? Me too.

I decided to start a blog about my life as a 28 year old woman living with Lupus.  Some people don't even know what Lupus is.  I knew very little before I was diagnosed. For that reason, I understand why people don't know what it is and how it affects me ... and get this...a whopping 1.5 million people in the US.
Since this is my first post I think I will define this disease and how it applies to me.  Don't worry, this blog isn't about statistics or diagnostics.
What is it?
Lupus is like a controlling boyfriend or an overprotective parent.  It protects you too much..
Something happens in your body's chemistry that causes its immune system to attack the good cells, not just invaders (i.e. bacteria, viruses, germs) Your body is constantly producing bright and shiny new cells and so Lupus is constantly fighting that. What a stupid thing to do! I know! 
So, how does this affect the person with Lupus?  I will give you my top 3 Lupus symptoms.  These are the ones that greatly affect the way I live.
The body's process of destroying it's own cells makes the person with Lupus very tired all the time, Red Bull and Starbucks be damned.  When I say tired I don't mean,"I just ran five miles," I mean.. "I'm too tired to get up and go to the bathroom." My body is constantly fighting itself  and leaving me with no peace or energy.
It also creates pain.  I'm in pain all day and all night and I don't ever get a break from it unless I'm medicated.  Even with pain medication, the pain is not gone, it's merely tolerable. As I'm typing this right now, I'm extremely uncomfortable. I take medicines that would put any normal person into a pseudo-coma, but for me it's normal.  My knees are a major source of pain for me..
Last, but not least, the sun causes the pain and fatigue to intensify.  I can wear a high SPF (I keep a 50 in my purse), but it won't stop the inevitable.  My skin gets red within one minute of me walking outdoors and then the craziness starts.  Fatigue, pain, and red skin: Could I get any sexier?! Why yes, I can.  The rest of the day even when I go inside I start getting red splotches on my skin.  If I wear SPF I don't get a sunburn, there are just areas of my skin that start burning and by the time I look down they are fire red. It can go away after 10 minutes or it could burn like that all night. There is no good rhyme or reason.

Okay ... enough of that!!
With anything, you can't understand it until you live it.  So, if you read my blog.. you're living it with me.  For so long I have kept my disease private and not invited too many people into my world for fear of judgement and pity. Then I would wonder why I felt so misunderstood and at times even lonely. Pushing people away so they won't see you at your worst is cowardly and I'm done with it.  This is my blog and if you don't like it.. don't read it.  Simple as that.  I hope you will though.  My reason for doing this is not so I can spout out all my feelings and have people tell me how valid they are.  My reason is that I have spent painful days and sleepless nights online searching for what it's like to be young and live with Lupus.  I didn't find it and it was discouraging to me.  I hope someone finds this and can see that the way they are feeling isn't uncommon.  To do this, I will include writing, pictures, and video! You aren't alone and I hope you will connect with me! That being said, welcome to my world.  I feel like I'm decent at making the best out of a bad situation, but I'm wanting to get better and stand up for Lupus sufferers by just making people aware. I might moan and cry and whine at times.. but I still will try to make a person laugh in the end.

By the way, Lupus is the Latin word for Wolf  .. rawwwr