Sad

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.

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 happen..my 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!

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.. creditreport.com 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 :)

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!

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 http://www.butyoudontlooksick.com/ 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!

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!

Flare

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!

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?!