Annoyed

My ultrasound on my heart came back normal so he put me on medicine for acid reflux to rule that out or to help. He also said I may not have lupus but something else entirely. Of course my husband was ecstatic and didn't understand why I was ticked off. I'm waiting to see what the rheumy says in December. I've read so many things where patients get back and forth answers on wether or not they have lupus whenever they switch doctors. Shawn thinks I should be thrilled, might be my period hormones more pissed off than I really am. To me this just means I'd be back at square one with no answer and no idea what's wrong with me. Top off the appt doc said my seizures were all in my head and I need to see a therapist. First step to curing my seizures is accepting their not real. Feel f'n real to me and I don't believe in talk therapy. To me it's pointless. Ugh

Missie 

I'm still here!!

Hello my lovely followers! Sarah here. Sorry it has been so long since I have blogged but Lupus has been kicking my butt lately! I just don't feel as if this flare will ever let up! Exhaustion, migraines, kidney issues, pericarditis, asthma, rashes, hair falling out in clumps & PAIN everywhere & Always in PAIN. Then the death of my cousin, the stress of all that exacerbated the entire flare. 
I am just so very very tired. I feel as though I am just existing here. This is no life, just existing. I am so incredibly blessed by my Husband and beautiful girls that keep me going! On top of the sweet angels (friend's' kids I watch throughout the week) because no matter how bad I feel physically always having children around & the love of my husband puts it all into perspective.
The bad days when I hear from no one & get very bad reports from Dr's & can get no relief from pain are the rough days. I wonder how time can go on & on & my symptoms from Lupus get worse & no one I know or care about or 'care about me' could call, text,  Facebook, email or kik me. It can be a very lonely existence sometimes. I have become so good at faking a smile & saying I'm good when asked. When really, I'm just existing. This disease is so scary in the sense that you don't know what to expect from day to day. Yesterday could have been a great day where toomorrow I may not be able to get out of bed. It is frustratingly infuriating sometimes!
The one thing I can say is my Dr has gotten a handle on my insomnia issues which helps A LOT! It is unfortunately more medicine but getting a good solid 7-ish hours of sleep at night is so nice!
It just scares me some days knowing so many people whom have died due to complications of Lupus, friends through various support groups that I have gotten close to. And there are family members & loved ones I don't talk to. We are not promised tomorrow folks. Life is way to precious of a gift to hold grudges or just take for granted that that person will always be there. You just never know. Hug those you have next to you whom you care about closely, tell those you love that you love them. You may never get the chance again.
Now on to loving on my loves & getting night time snuggles! My favorite part of the day! <3
I will make sure to not let so much time go by before I blog again....promise!
~~Sarah

"There's no such thing

....Of a good day to give hope. Any day you give hope, is a great day!"


Hello my fellow Lupies.
Today I have so much in my mind to share but I will just share a couple of the things that come to mind.
I am very blessed to be able to represent our Lupus communities where I live. I am active on our Lupus group of Colorado Springs as well as other fundraisers and such and it is such a joy to be able to do this.

My words of encouragement for you today is, not to let Lupus take your Joy away, you can do something for another fellow Lupus Brother or Sister that need it. 
May it be a letter, a visit to see how they are doing, or it could be join your local lupus community to help others with your story, you never know how much that person sitting next to you, need to see that someone like them has made it thus far. To know for themselves that if you could, so can they. It only takes a little bit of courage and an open heart. 
With an open heart, and a spoon dust Sprinkler, you can reach as many lives battling Lupus and give them hope!  

Go out there, be hope, speak hope, give hope!

Love and lots of Spoons to all.

Jen

Better than all the spoons in the world

Emma's smiles and laughter make everything better! She's better than all the spoons in the world! {look up the spoon theory} so blessed to have such a wonderful child who for two years old is already wise beyond her years. I've never seen a 2 year old worry the way she does, and it sometimes breaks my heart. 

She knows what to do when I'm having a seizure. She can sense when I'm having a bad day and on those days she tends to want to have a Caillou marathon on Netflix in bed with me :)

On one bad day she went to my cousins house so I could get some rest. I was told Emma moped around and finally asked my cousin "is my mommy ok?" When she came home she kept asking if i was ok. A two year old should not have to worry about their parent! I try to be as brave and strong for her as I can be! She's my entire world! 

Shawn & I are so blessed to have this amazing child!!!! I could brag about our daughter all day! Mommy and daddy love you chickadee!

Strong in the face of my flares

I don't hide my illness. I share it so others know they're not alone in their fight and to raise awareness! I'm not ashamed of my illness, it's a part of me and something I have to live with for the rest of my life, but it does not define me!

When I'm in a flare I most likely will have the butterfly rash for a week or more. The rash itself can be very painful, but sometimes I don't notice it. Along with my rash I'm in major pain. My arthritis is unbearable and somedays I can't even get out of bed. I'm lucky that lupus hasn't progressed to more than my skin, joints, and my seizures. I'm lucky to not have it effect my internal organs. I fear for the day that happens, but I will continue to fight and kick this disease in the ass!

{A butterfly rash is a rash that takes the shape of a butterfly. Known more formally as a ‘malar rash’, a butterfly rash is most commonly associated with the autoimmune disease lupus, though it can also be present in other conditions and particularly other autoimmune conditions.}

-- Missie 

It's Not the End, It's Just a New Beginning...

Hello Everyone. Sorry for the long delay in posts from my part. I have had so much going on the past few months since Missie, Sarah and I started the blog, that I have literally spent more time hospitalized with no internet to post an update on my health Status. I have so many things to tell you about, but today I will leave you with just a little bit of mixed up feelings going through my mind at the moment.

Here it goes:
My body is on "Screw you" mode. I need a shirt with a line that reads "my body is trying to kill me".

After having an exhausting day, no sleep, I finally go to bed and then my body kicks in to gear and Lupus decides to get me up because the pain is so unbearable, just sobbing in silence will wake my husband. So, here I am, in pain, again, with a butterfly rash on my face, and its an evil rash hence its making the sides of my nose that hit my cheeks bleed.

Took Prednisone, to help in the meantime but that was 18 hours ago and nothing. Sometimes I wonder and ask my self, If having an auto immune disease has a reason behind it? What is that reason? It has been nearly 2 years since I got diagnosed, and even though I am fighting to keep up, as fast as the world is turning, my body is trying to slow me down, screaming that I can not in fact be that person I used to be.

They say, it takes one, to know one. I know many that hate the reminder of the disease that is tied up to my future hand and hand, and some might say that I live under the shadow of pain which is painfully true. But it was not my choice. I had a perfectly happy life before my walls came tumbling down. Not saying I ain't happy now; but it would definitely be much better if all this auto immune diseases, Lupus, Sjogrens, Raynauds, Osteopenia, CML, CHF, Cardiomyopathy and more were not in the picture.

This may sound like a vent. it is in a way but it's also a reminder for me of all the things that I have accomplished when every doctor had said I wouldn't make it past 7 months and it has been 20 months already.
It would be even much better, if I could reconcile some sleep on my own, or being able to sit outside for more than 30 minutes so I could enjoy the laughter of my children while they play on my green backyard.
But there again Lupus has decided that for me.

My body can only take so much, and unfortunately it's taking a beating since my old rheumatologist cut my chemotherapy treatments putting my life at risk of dying by doing so, just because I fired her, but that is a story for another day.
My body hates me. And there is no other way to put it. 
But my battle doesn't end with it trying to kill me.
It ends on my terms when I decide to open my eyes every morning if the pain has allowed me to get some sleep the night before, and putting my feet on the floor, to take a leap of faith in to the unknown and uncertainty of my new found day, even though it takes "Spoons" to actually do each and every little thing to keep me going, and that includes breathing because believe it or not, even breathing hurts when you have Lupus. (For the ones that don't know what I mean by 'SPOONS, look up "The Spoon Theory")

So, in the mean time, I remain, steadfast, hoping, wishing, and willing to move on one more day, if taking it one day at a time is what it takes, and even some times taking it 5 minutes at a time,and then starting those 5 minutes all over again.

You don't know how much you love and appreciate being healthy until that precious gift is gone, taken from you forever and your life, your fertility, your dreams, your goals in life, have been decided for you by other people.

That doesn't mean you stop dreaming. It only means you fight harder.
It means you dream bigger, You do the best you can with what you've got, and you try your best, because is better to know that you tried than you failed because you weren't brave enough to do it.

Don't let your dreams be just dreams someone said. And here I am. A wife for almost 10 years of THE most extraordinary man I have ever known, mother of 2 beautiful sons whose fingers have my heart wrapped around them, but nevertheless fighting the battle of my life, for survival, with endurance, lots of patience and out of pure love.
Because it doesn't end here.
Even when lots of people who knows me consider my life over.

I may not be ever able to have more children and give birth to a little girl my husband and I always dreamed of having, but I am lucky because the Lord blessed me by giving me 2 precious boys, and I won't deny it hurts a lot when other people say out loud in a derogatory way that I will NEVER have another baby, but I know that it would hurt me more, if I left my children motherless for trying to have another baby putting my life and hat baby's life at risk, which is a pretty selfish thing to do and by no means I intend to do that.

Because believe it or not, the day am no longer here and my husband decides to re-marry which is bound to happen if Lupus wins this battle, NO OTHER WOMAN, no matter how much she is said to love my kids, will EVER love my children more than I do or do a better job than me at raising them for that is MY responsibility and no one else's.

So, I fight. Steady, patient, in pain but vigilant that one day, relief will come and perhaps then, I will be able to look back at this dull days and smile and I will know that if I could get through this, I will be able to get through anything, because even in the worst time of my life, when I was defeated, and nearly dead, I chose to come back to fight, and get up, and not ever, not for once gave up hope because, if there's one thing I have learned, is that hope is the last thing one lose in life, not until the very end and your last breath anyways.

I may not be the same I was 2 years go before I got diagnosed with this terrible disease, but in a way I am stronger.
 I have seen death not once but TWICE, I have spoken and danced with it, and even then I fought to survive, to be, to love, to dream, to keep giving, to hope and to keep moving forward. I am in pain now, but I know wont hurt forever.
And although I have bad days, I also have good ones. Beautiful ones at that.

This disease, this pain and sorrow is a little inconvenience, a small rock on my road that was there to make me skip the path I was meant to follow, but it's also a simple reminder even that if it doesn't get any easier, doesn't mean it will be impossible to achieve.
There is always a reward at the other side of the shore after a long swim my mom used to say when I was little, and I know mine awaits!

Because I have seen worse and in my worst moments, when everyone thought I would be on my knees, defeated, with my arms and my head down without a sign of getting up, I did it, got up and put my boxer gloves on and decided to prove the world that I can fight Lupus and Leukemia like a girl!
So, It is NOT the end, but rather a new beginning, with a new perspective of things and with a different sight as of how to pursue this battle.
Keep fighting if you are walking on my shoes. You can do it just as I have so far. Jen aka Jmona PEACE OUT!

Relieved

Oh forgot to update. My new PCP office called me today while Emma and I were at our play date. My blood results that he wanted new of everything came back fine but showed Lupus and RA (no shit I didn't know that -.- lol) so the lady that handles referrals will call me either tomorrow or the day after to tell me who my rheumatoid specialist is! Finally feel like I'm moving in the right direction in treating my health!

Meloxicam update 1

I called my doctor's assistant today and left her a message on her voicemail tellin her about how bad my pain was last night. I asked to possibly be put on a different arthritis medication and for a pain med stronger than Tylenol, but not so strong that it'd render me totally useless for my daughter and husband. I'll post another update after I get a call back and let y'all know how that goes. 

-- Missie 

Meloxicam

Anyone else on Meloxicam? It's for arthritis and I've been taking it since Wednesday morning. It's one pill a day and you can't take aleve with it. Last night I was in so much pain I cried, couldn't sleep and couldn't move!!! Finally I managed to take a hydrocodone and slept 4 hours before Emma woke me up. I wasn't in pain when I woke up, but damn I am now :( I'm calling my PCP today to see if they can prescribe me something else and some pain meds. -- Missie 

Productive

I've had a hard time trying to be productive. When someone is watching my daughter for me I just look at the mess in my bedroom and get so overwhelmed that I have to sit down! I've had a continuous flare since spring it seems and when I do have good days I use those days to spend time with my family. My husband has been really good at not saying anything about the house. I know he's thinking it though. Today I'm determined to clean! Even if it's just for a little bit! Can't over do it today or Wednesday. I'm going to the zoo with two other moms and I'm going to need all the extra spoons on Thursday that I can get! I hope y'all are well! - Missie 

Butterfly Warriors Fundraiser

We're spreading the word of this fundraiser, Butterfly Warriors is a separate Lupus Awareness group from us. 

Butterfly Warriors is doing a fundraiser to save money for school supplies for kids with lupus! The website is www.butterflywarriors2013.com ! The end date is August 1st, 2013.  

Don't Remind Me

Ok, I have seizures and other chronic illnesses that causes brain fog. I forget stuff, A LOT of stuff. Went to the Grand Canyon for the first time a few months ago, I have ZERO memory of it.
Well, I have been very sick & having seizures & lots of other severe symptoms. My husband can't really miss work as he has been allowed OT (who can pass that up?) So, the girls & I have been staying with my in laws. (Which has it's perks! My in laws are in love with our girls & they are amazingly good to me!) Well they have all decided to go to the Grand Canyon tomorrow. My mil says she'll help but she gets distracted with her sisters visiting & is no help, so I'm on my own.
Then I'm like "what are we doing all day at Grand Canyon with 3 kids?! Then my fil says! " Well we just ride the 4 shuttles from stop to stop" I'm like ,shuttles? Mom says "yeah you don't remember yelling at the driver last time because you can't bring the strollers on & have to fold them up at leave them up front?" I was like I don't remember the trip.of course I don't remember that! And she keeps talking about it & laughing about it. It's not funny! I don't remember!  One thing I beg my husband is if I say I don't remember something, don't keep talking about it & laugh at me about it! Now, on top of over doing ing it today & having 7 seizures in 24 hours. I have to get up at 6am to get myself & 3 kids ready, ride 2-3 hours in the back a 14 passenger van when I get carsick & battle vertigo. And go allllllll day walking pushing a stroller watching 3 kids and getting on & off shuttles then drive home. As sick as I have already been, I wont doubt if I end up in the ER tomorrow night! I am so sick TO DEATH if explaining what.OVER-DOING it means & the issues it causes. Guess they'll witness it first hand tomorrow! ~~Sarah

Photo Journal Update

This entry I would just like to share some photos with you of my life this past month :) I've been in a constant flare, but I've had some good days! 

We got Emma a little kiddie pool. Each time I swam with her my flare acted up worse, but it was worth it! 

I was able to get out and shop! I had a big shopping girls days with my mom and my beautiful daughter Emma. 

At some points this month I just wanted a vacation from my body. 

Felt good to have the wind in my hair! 

This past weekend was super busy and took a lot out of me! But Emma got to spend lots of time with her two aunts Lylah (2) & Kyleigh (6). 

And here is a collage of pictures I made to celebrate my amazing husband! Today was his 25th birthday! We ate at Taco Bell and since we didn't have Emma with us with hung out at our local comic book store for a couple hours. I picked up all the comic books I had waiting in my file and we played some board games with some people while we were there. I had one seizure while at the comic book store, but our friend that owns the store helped me get to the couch in the back before my seizure started. 

Hope you enjoyed the pictures :)

-- Missie 

Watch out!

Watch out lupus & seizures! I plan on spending this weekend having fun with Shawn, Emma & my inlaws! I plan on not having any time for you! You probably have something different planned for me, but I don't care! I deserve a break! I want to chase Emma, Kyleigh & Lylah around and not get fatigued! I want to go swimming without taking breaks in case I get to shakey and worry about having a seizure. I want to be in the sun without my lupus rash flaring up all over my face & body! Screw you lupus and the horse you freaking rode in on! I know I'm not a normal healthy person, but I am sure going to try and live like one this weekend! Lupus be damned! 

-- Missie 

So sorry I haven't been blogging! My flare ended for like one day and that one day we spent it with my inlaws. Note to spoonies everywhere: trampolines are the enemy! I had a good time. Only had one thing that bugged me and that was a family member saying I'm to young to know what pain is......... Oook. I just pushed that into the back of my head and didn't think about it the rest of the time we were there because I wanted my first day out of the house to be drama free. I chased my daughter, Emma (2), and my two little sister-in-laws, Lylah (2) & Kyleigh (6) pretty much the entire time. 

{think my makeup did a good job covering up my butterfly rash}

Ever since that day (last Sunday) I've been stuck in bed. My butterfly rash flared up more and I threw out my back. Nothing has helped the back pain :(. 

Emma is talking a lot more which is amazing! Love her to bits! Except she keeps calling me Missie. She calls me mommy too, but it aggravates me when she calls me Missie. I realized this was a phase because when I was at my inlaws my 2 year old sister in law called me mommy the entire day. Emma finally got over her fear of swings that day too! 

And today while my cousin had Emma my cousin called to tell me she beat her fear of the swimming pool (a kiddie pool anyway). I'll have a picture of that later. 

As of right now I'm in a TON of pain. Back is killing me still, my joint pain seems to never go away, and now I'm all itchy. I've been itchy ever since I took a tick off of Emma's ankle. Ugh hate ticks. It was her first one ever and definitely won't be her last. 

Love and spoons to you all and I hope you're all doing ok!

- Missie  

Awareness bling

I ordered Emma and I matching mother/ daughter lupus awareness bracelets from www.foxxycharms.bigcartel.com! They're to lovely not to share! I love them! 

- Missie

Pain

The definition of pain is: physical suffering or discomfort caused by illness or injury.

I had NO concept of pain until I became chronically ill. I had my wisdom teeth pulled at 15, had several root canals & a laporoscopic surgery to remove a large ovarian cyst at age 17. Even then, that was nothing compared to what I endure on a daily basis. I put on my best "fake smile" & make it through the day. But pain so severe, so deep it feels like someone is stabbing me with a hot iron in my bones on top of severe muscle spasms. Severe migraines 2-3 times a week. Labor, csections, yeah that sucked. But at one point, the pain from that ended. This level of unending pain on a near daily basis is enough to break a person. This is not even a day that I have had seizures, this is every day pain. I'm hot but cannot bear to sit under the ceiling fan without a blanket because the cool air causes my muscles to spasm & ache worse. My oldest daughter is so very affectionate & constantly touching & rubbing my arms, it almost brings me to tears because it hurts so badly on those bad days and even though I never tell her to stop, as a Mom it breaks my heart that my child showing affection causes me pain. Imagine that as a Mother, your child touching you physically HURTS.
Now, I don't know why some days are worse than others. And yes, I will be honest there are days I cry out to God that I can't take it anymore. But, I do. I press on, I move forward. I don't complain much to others, except to my husband and my Mother in law when she's around because they don't judge me for it. Today is just a very very bad day pain wise. I will make it through this day, and I will make it through the next bad days. I will be stronger for it.
Pain, I never really understood the definition until I became chronically ill. Be careful how you treat someone, you never know what they're battling on the inside. Because even if I saw you today & you asked how I was, I would smile & say "great!"

Understanding

A friend posted this on Instagram & I loved it! I get bashed, blocked, ignored & talked badly about for "complaining" all the time on social media. It bothers me because the people who tell me I "complain" too much used to be good friends & family. Instead of taking it for what it is, me needing an outlet to
Vent, asking others for encouragement & prayer, they took it as complaining & said it bothered them. I once had someone say "how could anybody be upset with anyone crying out for prayer or help!? Shame on them!"
I appreciate those who understand ME & don't bash me for using social media as an outlet. You couldn't possibly know what it means to have someone smile & be encouraging on the bad days, or how their rude ignorrance can make a bad day worse.
So, be kind do EVERYONE you have NO idea what someone is hiding behind that fake smile! YOU could be what changes someone's day, it's up to you! Let's be encouraging & understanding of others & each other!
~~Sarah

Rough week

Sorry I haven't blogged much this week. My week went from good to badly in a flare over night. I still don't feel well. My more prevalent symptoms right now are EXTREME fatigue, seizures, being numb & tingly on my right side, migraines, nausea, dizziness and extreme all over body aches.
I got pretty discouraged with it all this week. This is no life I'm living! I wouldn't give up being chronically ill, because it's who I am & I feel it helps me to have compassion for others. But more than a few good days here & there would be so nice! I feel so sorry for my kids & husband when I'm flaring like this, not much of a life for them either :(
Just wanted to say "Hey" to everyone & hope your week is going better than mine!~~Sarah

Instantly

A funny thought that made me smile:

Get out of the tub. 

Put on sexy blur nightgown. 

Then add white compression knee high socks. 

Then add gray compression gloves. 

Nightgown instantly unsexy. 

Lol I look ridiculous! Oh the life of a Lupie. 

- Missie 

Still Here

Sorry I haven't blogged in a while! This flare has been kicking my butt! I've lost 3 pounds because I've lost my appetite, I can't cry because my eyes are so dry, seriously fatigued partnered with annoying insomnia, seizures, painful joint pain, butterfly rash, etc etc etc!

My butterfly rash and eye swelling didn't get as bad as it usually does so that's a plus! The dry eyes drove me mad though!

 I usually take a warm hot bath at night for my achy joints and during this flare I needed to do so, so badly! But as my luck would have it, our hot water heater broke!! (they're supposed to fix it tomorrow morning) As Sears took my grandma's money ($200) to come out and install the new one (we already have it, it's sitting outside my house, just need to install the freaking thing!) they told her they'd be out here first thing Saturday morning to install it. Well my grandma called on Friday to see what time exactly they'd be here and they woman said "Oh we don't work on Saturdays, but for another $100 we can come out on Saturday." We were all SOOO pissed! Needless to say tomorrow after it's fixed there's going to be a line at my house to use the shower.

I have no idea how I would of gotten through this flare without help. I was stuck in bed pretty much 90% of the time, and my cousin took care of my 2 year old. Made me feel blessed really. When we eventually move out we'll probably be 30 minutes away from my family, but I know my inlaws will love being around Emma more so I'll still have the help. I can not wait until I start seeing the doctor in July so I can start taking medicine for my Lupus. Just taking 2 aleeve every day is NOT helping my pain (thanks to my other quack of a doctor).

This flare is still kicking my butt, but not as much. I was able to get out the house for a short period yesterday and for a couple hours today! I walked a lot and ended up having two seizures around 7pm. I was in the sun a lot so I'll probably end up regretting that though :( my arms are already itching like crazy.

Love & Spoons,

Missie

Discouraged, Scared...

Hope everyone is feeling well! I have been doing so good & think I may have over done myself some & am being slowly knocked down by this flu bug I THINK that's what it is anyways. My husband is having the same symptoms I am, so pretty sure it's not just the Lupus. Except, even the flu tends to set off my Lupus (grumpy disease this Lupus, eh?!) I have been battling migraines for 3 days & feeling on the verge of passing out & my nausea, dizziness, & body aches are worse today. I am so discouraged to be feeling this way after a couple of GOOD weeks. Weeks where I felt better than I have in years. I don't want to admit to my husband how bad I am suddenly feeling because he is getting sick as well & he is diabetic so it just sends his sugar levels through the roof when he is sick, which makes him feel worse. I am just so FED UP with feeling this way. I am so over it! Why can't it just stop, just for a little while even? I am just discouraged by it & need to vent. And I promised myself once we started this blog, I would share the good & the bad. So, here's the bad. I am strong & stubborn but boy does this disease knock the strongest to their knees! A flare for me means seizures, which means someone needs to be at home with me when that starts as I have small children. God please, I can't handle seizures at this point! We can't afford for my husband to miss work & really have no one else to help.
Speaking of all that, St Joseph's Hospital called & my prior auth through my insurance went through & they want to schedule my 5-7 day hospital stay for seizure/brain wave monitoring & mapping & brain & kidney biopsy. I am terrified to do this (not the long term eeg part, I've done that before, the biopsies scare me) they have called twice & I am avoiding it due to my fears. Stupid, I know! I have to get it all done to know what we're dealing with & the severity of things & get me on the right treatments so maybe I can get this Lupus into remission at best or feeling well for longer periods of time at the least. But geeze, brain biopsy, so scary to me! My not feeling well is a motivator to get it scheduled and over with though. Guess I will be calling them on Monday. I can't schedule it until my daughter is out of school for the summer though, as I homeschool her. But we are then faced with, where will my girls stay while I am in the Hospital? We can't afford my husband to be off work that long. But, his mind wouldn't be on work with me in the hospital anyways, so he will likely take off that time. God, how am I going to be away from my girls for 5-7 days?! Sure, they can.come visit, but it's not the same.
Goodness this post makes no sense! Just the ramblings of a discouraged Lupie, terrified of what's to come. Sorry for that. But, this is my life with Lupus, this is my fight, this is the bad stuff.~~Sarah

Put on Purple Day!

Today is Put on Purple Day for Lupus Awareness! I have had an OVERWHELMING amount of people tag me in photos & text me pics of them wearing purple for Me. It has moved me to tears. I feel so alone some days in this fight against Lupus, so the support made me realize how much support I do actually have.
My biggest support team is my family. My girls are rocking their purple today, earlier I heard my oldest daughter tell my middle daughter "we gotta wear purple for Mommy today, for her Lupus!" Made me proud. My advocate, my rock, my caregiver, my Husband was decked out in his purple as he went to work today. I got a little choked up as I kissed him goodbye this morning as I could see the pride he had in supporting me by wearing purple. Along with the Facebook posts of his today "I wear purple for my Wife" and sharing everyone's posts that have tagged me wearing their purple & personally thanking them himself for supporting me. I realized today, people love me & WANT to support me in my battle. I used to think my husband's support was out of loyalty or pity, but I saw today, He hates this disease but he is PROUD to support me. He, along with my children & other family & friends fight this battle with Lupus second hand, right along with me!
So, I encourage you to look around & take notice of those supporting you, advocating for you, beaming with pride at your strength to fight this battle & proudly spreading awareness in your honor. You are not as alone as you feel on those bad days, I promise you!
Now, let's wear our Purple LOUD & spread awareness!~~Sarah

Happy Mother's Day!

Rather laying sick in bed, spending time with family, or having the day to yourself Happy Mother's Day! Don't let Lupus steal the celebration & appreciation you deserve today!~~Sarah

Fibromyalgia Awareness Day

It is VERY common for Lupus sufferers to also battle Fibromyalgia. So, here's to raising awareness for Fibromyalgia as I also have this extremely, constantly painful invisible illness. It is debilitating & makes one feel like they have the flu all of the time. People who don't have it or understand it, don't believe the seriousness of this disease. So put that purple back on today & lets get loud raising awareness of Fibromyalgia!

People Suck

I'm so sorry MY having Lupus gets in the way of your life. It destroyed my life too. I'm sorry me talking about it & spreading awareness of it bothers you. But as a fighter of it, I feel it's my job to talk about it. You and your lack of care or concern for my battle have hurt me far more than the Lupus ever will. And you know what, sorry, I'm not sorry. Look the other way if you don't like it, you've done so well at it this long.~~Sarah

World Lupus Day 2013

Put on purple, throw your L's up & support World Lupus Day! Spreading Awareness gets us closer to a cure! Thousands of people have died from this disease & thousands of people don't even know what Lupus is! Lets take the world by storm & spread awareness y'all! ~~Sarah

World Lupus Day

Today is World Lupus Day! Let's POP on our Purple and spread awareness! Learn something new and educate! There is no cure for this horrible illness, but awareness is key! Lets stand together and lets get loud! Lupus Sisters Unite!

Mother's Day

Mother's Day to me:
Mother's Day is a day where Mother's are celebrated, honored, shown appreciation for all their work, sacrifices, time spent teaching, loving, mentoring, disciplining, Mothering.
As a Mom, I appreciate a day of being appreciated. But, for me; as someone who was told at a very young age that I could never have children, who had surgeries for Endometriosis, who fought Lupus & seizures & acquired hypothyroidism during & directly after each of my pregnancies, and had 3 c-sections; Mother's Day is a day I celebrate the fact that I am a Mom! It is my greatest Blessing (next to my Husband) and my greatest reward. It is worth all of the sacrificing, sleepless nights, painful pregnancies & deliveries. So as much as my children will celebrate me on Sunday, I will celebrate them just a little bit more. My Mom once told me I could never understand her love for me until I became a Mom myself, she was so right. My children were prayed for, each and every one of them, they were all I ever wanted as far back as I can remember I just wanted to be a Mom. Thank You God for answering my prayers. Evah Anntoinette, Lilah Abigail, Ellah Adeline I love you so much, I adore you, I am so incredibly thankful to be your Mommy. Thank You for changing me in ways I never thought possible. When I cry as I look at and read your sweet little cards you made & lopsided cake you baked & macaroni & cheese you cook me for lunch & frozen pizza  you cook me for dinner, & hand-picked flowers that are actually weeds, on Sunday, they won't just be tears of thankfulness, or happiness they will be tears of celebration, celebrating each of YOU, celebration that I was chosen and BLESSED enough to be your Mom.
Mother's Day to me, is a day to celebrate & appreciate the fact that I am the Mother of three beautiful princesses!

Faces of Warriors

#facesofwarriors I am Sarah and I am a warrior of SLE (lupus) Fibromyalgia, Seizure Disorder, Grave's Disease, Endometriosis & Migraines. It all started in 2004 right after I got married with Grave's Disease. I had my thyroid removed April 15, 2005 & thought my misery was over. I was wrong. I then began having seizures. It wasn't until 2008 after we moved from California to Arizona after numerous hospital stays for severe seizures & even an ICU stay that a Neurologist FINALLY listened to me & brought up Lupus. The seizures are a symptom of the Lupus as the Lupus affects my central nervous system & causes inflammaion/swelling on my brain. Here we are 5 years later that I FINALLY have good Dr's & specialists. I have a bit of a road ahead of me with testing, procedures & hospital stays to get me in the right treatments in hopes to get the Lupus in remission. The Fibromyalgia causes pain that I will always deal with, it makes me feel like I have the flu all the time. The Endometriosis could be so much worse as I have it mild. It also causes pain, but I have had 3 successful pregnancies despite the Endometriosis. I have migraines 2-3 days a week. Going through these things you really find out who is there for you. It still hurts me on a daily basis those who have given up on me & show no support or concern. BUT I have learned to focus on the relationships/friendships that matter, those that are there for me & I for them. In all this, you will always see a smile on my face & I won't allow myself to go through all this in vain. It is my goal to raise awareness & offer support to others. I am not a victim in all this, I am VICTORIOUS in my fight! 

Spreading the Word

A friend of ours has a team in an upcoming Lupus walk. We said we'd help them out by spreading the word! If you're able to donate anything at all, that is a HUGE help!

Walk To End Lupus:

The walk is June 14th, 2013
Team Name: Livin La Vida Lupie

 As of right now they have had one donation so far. Please if you can donate ANYTHING at all please send it via to Paypal livinlavidalupie@gmail.com, Rosie Thimmes is also working on setting up a donation page, through the LFA's site.
They need everything they can get, even if you can only afford a dollar, it'll help! The money is going through the LFA to OSU for research to help find a cure for lupus! They can always use team members, but we need as many donations as possible. They will be doing raffles and auctioning off goodies to raise money too!

An Update from Jen

Hello everyone!

It has been quite a while since my first entry.

Truth to be told, so much has happened between then and now and I have no idea where to start!

Let me start off with the month of March.

I started feeling chest pain and it didn't go away overnight. But before I continue let me give you a word of advice: NEVER leave chest pain unattended, it could be just that chest pain or it could be something major and you don't want it to be something major. You know that saying. "Better safe than sorry"

In the morning I had to choice but to go to the ER when I saw the pain wasn't going anywhere, and when I got there, they suspected I was having a heart attack. Blood Pressure sky high elevated, pain irradiating to under my left breast, arm and left leg pain, neck and lower back pain, etc.

They started off testing my Heart Failure enzymes which came back off the charts, had a chest X-Ray, then a chest with contrast and the last thing I know, a full Medicine Team is on top of me, and am getting admitted.

Everyday I had to give blood 3 times a day, get a ton of meds for everything a day and slept none of the time I was there. That's without adding the endless amount of hours I spent crying because I missed my kids and husband.

after nearly 4 weeks in the hospital, I was finally allowed to go home. Just in time for my next Benlysta infusion. (For those of you who aren't familiar with Benlysta, you should look it up. A miracle drug, and the first approved specifically for Lupus in over 55 years by the FDA)

The next day, I went to Memorial, all ready for my Infusion. Everything went fine through my infusion. First to avoid the itch, we started it at 75 drops per minute increasing 50 drops every 15 minutes. Over the curse of 3.5 hours, I was done with y infusion, my vitals where normal, and I was sent home.

Little did I know.

The next morning, I woke up with the same chest pain that was haunting me 4 weeks before my infusion.

Having had my chemo infusion in Memorial, the nurses at Evans Army Community Hospital, advised me to go to Memorial. 

Once I got there, the same story started all over again, and I was admitted for another 3 weeks, and since I got home, I have been on and off the hospital at least 5 times.

I am currently home and I have been in total at least 9-10 days all together but I'm enjoying every second of it.

I had my Benlysta Infusion last Friday and it has given me enough energy to go to the Zoo, the Aquarium and went out to eat with my family.

I wont deny that I'm a little exhausted but it's all worth it and even though, Lupus has reached my heart and its the cause of the issues I am experiencing rightnow; I won't let it win.

I might have bad days like the rest of you, but I can let it kick my butt and let it define me or I can kick Lupus's butt to the curve and show that my determination to live is bigger than its will to put e on my knees.

I am so thankful for having 2 amazing ladies that have been praying for me and cheering me up from the sidelines, giving me love and hope to make it another day.

My Lupus Sisters are everything to me and I am more than blessed to have found them and have them in my life.

I believe we can achieve many things together and already are touching many lives. But a lot of the merit if not most, goes to Melissa aka Missie. She has done most of the work and she is an example to follow. She goes through so much on her day to day basis with her seizures and taking care of a family and still has the energy to do all that she does.

If you can, please leave a word of kudos to her for all that she does, she is really amazing.

Also, don't forget to follow us in Twitter, Instagram and Facebook. We also have bracelets available with our logo available for sale. They are beautiful!

Lots of love, Spoon dust and prayers for all.

I am Jen McCulley-Montes. A Lupus survivor.

I may have Lupus, but Lupus doesn't have me!

-- 

I am Jmona, A Lupus survivor. 

I may have Lupus, but Lupus doesn't have me!

Lucky number 13

I wanted to post this picture the other day of all the meds I'm on now, but I couldn't get it to upload. Well, I installed the Blogger app on my phone...FINALLY soooo get used to me people! ;) hahaha The prednisone every day is KILLING me! I'm starving all the time. I wake up in the middle of the night to eat something. I'm so thankful for these meds because I feel so good. But I'm turning into a fat heiffer! :( Thank God it's summer time, because summer dresses look ok on me right now...as long as I don't look in the mirror that is.

Good Day

Today is a good day for me. Actually the last several days have been good! Which is a huge relief. I love being able to have fun with my kids, play on the floor with them, paint each other's nails, color, dance & be silly. And I enjoy having the energy to keep the house picked up (hey I have 3 kids, picked up is as clean as the house gets!) And have dinner ready when hubby gets home from work. I love so much to serve him after he has had a long day at work. He takes such good care of me when I'm sick, I'm thankful to have the energy to give back to him.
The problem with good days, I keep pushing & pushing myself. I never know how long good days are going to last, so I get done as much as I can. To the point that I over-do myself & work myself into a flare. Ooops!
The other bad thing that comes from good days, is those around you that don't fully understand how Lupus works, see you doing good, then think you're faking for attention when suddenly you're good days turned to bad days. Oh and then there are the people that don't care either way. Why I even allow those people in my life is beyond me.
It's such a catch 22 to have good days! And embracing these days & telling yourself not to let people who don't understand get to you, is so much easier said than done. So yes, as convoluted & selfish as this sounds, I kind of dread the repercussions of good days. I LOVE the good days & am incredibly thankful for how good I have been feeling. But, I dread what's to come. The crash & burn, the "but you were just so healthy yesterday, how can you be so sick today" comments, disappointing my 3 precious angels when suddenly I can't play like I was the day or days before. Just seems like so much for one person to handle, to constantly think about, "when will this/these good day(s) end?" "When will I be a disappointment to everyone again?"
I'm trying to enjoy feeling as good as I have been, better than I've felt in years. But, well there's always a "but" isn't there? I just wish more people understood like my awesome husband & Lupus Sisters do.
Good Days, are they really that good, knowing what's to come when the good day is over?
With that said, all 3 of my girls are napping, I better sneak one in too!
Love & energy filled, pain free days to you all! ~~Sarah

Lupus Sisters Awareness Bracelets

We recently took orders for awareness bands that say Lupus Sisters on them. They look great and all the money that doesn't go towards buying them & shipping is getting donated to The Lupus Foundation!

We will be taking orders once a month for the bracelets. They're $4.50 each. If your interested in a bracelet email us at LupusSisters@gmail.com subject: bracelets. If we're currently not ordering them at that time you can be asked to be put on the waiting list for the next month! I'm currently taking names down for people who would like to be on the waiting list for June.

Stressing and Seizures

Health insurance is sometimes to expensive for a person or a family to afford. So when you're chronicly ill or just sick very often having Medicaid or Medicare are very important things to have. I started on Medicaid in 2010 and had it all the way to January 2013. They turned it off because I was late turning in some paperwork (you can't mess around with Medicaid!) so after jumping through hoops and my husband giving some people a talking to I got my Medicaid turned back on last month! I was so happy I spent the whole rest of the next morning on the phone calling around for doctors that took Traditional Medicaid. After a few hours and a short break I had finally made an appointment with all the new doctors I needed to see. Sadly when you're a new patient you have to WAIT A LONG TIME for you first appointment. I won't be able to see my new PCP until July 31st & my rheumatoidologist until August 6th!

Everything was hunky dory until one day this past weekend... I was taking a nap and during my dream there was an announcement, and then they repeated the announcement except the second time it was different it said, "Melissa Clements is denied Medicaid for the following reasons...." I woke up saying "WHAT THE F***?!" To my husband reading two letters out from Medicaid. One for me and one for our 2 year old both saying we were getting kicked off Medicaid because we weren't Indiana residents!!!! I'll be 25 years old in August and I can truthfully say I've lived in Indiana for all 25 years!

Of course after reading the letters the Medicaid office was closed until the next Monday. My husband works A LOT! I mean seriously A LOT! When he is off his work phone rings 24/7. So we were excited when he actually got a four day vacation this past weekend! And wouldn't you know Shawn, Emma and I all had to go to Urgent Care for sinus infections! So we're all three really sick, and to top it off I was so stressed because of Medicaid that I couldn't sleep and we lost count of the amount of seizures I had in those few days. The seizures varied from petite to grand mal and I was pretty much stuck in bed or on the couch.

My husband called Medicaid today and when he texted me back that it was all fixed and it was just a paperwork mistake I was so happy!

I know doctors tell you all the time to avoid stress. I want to laugh in those doctors faces, and tell them to live a day in my life!

Love & Spoons,
Missie 

Brain Fog

As I sit here at a blank screen trying to figure out what in the world to blog about it hits me. BRAIN FOG! We all have "Lupie Moments" where we can't think, can't remember. Like now I'm still having a hard time trying to describe brain fog!

Brain Fog affects people of ALL ages and is described as confusion. You feel lost, confused, forgetful and even maybe depressed. Not only people with Lupus have brain fog; it's actual a very common problem, and for some reason isn't really recognized by people in the medical field. There are tons of reasons you could be experiencing brain fog, the most common are emotional, biochemical or physical. If you're to weak and can hardly focus thats a type of brain fog.

So how do we try to avoid these foggy moments? Most times it's inevitable, but a lot of people think that if you "exercise" your brain it'll prevent these moments. By exercising your brain I mean do crosswords, puzzles, or even math (ugh I know).

For me I have a hard time remembering the simplest things! The other day I had a ten year old correct my math while playing a game of Monopoly. I have a hard time remembering memories, what I was saying during a conversation, I can't remember math at all (needless to say my husband is going to be in charge of homework once Emma is old enough for school!), I start down an aisle at a store and have no idea why I was going there. I think my seizures, that have lasted for almost 4 years now, are aiding my brain fog. While having countless seizures I'm pretty sure I fried some brain cells.

Brain fog is stressful. Can make you very angry, depressed, or both. I get so stressed some times I feel like I'm going to explode with anger! At those moments I tell my husband I need to seriously be alone and he and my daughter leave me alone until I cool down. I'll usually take a nap or loose myself in a book to de-stress. If it's to bad I take 5mg of Valium, but I don't recommend depending on Valium EVERYTIME you feel angry or depressed. Valium is VERY addictive! Talk to your doctor about appropriate times to take or not to take as needed medication!

Comment below and tell us your most memorable mistakes that have been caused by brain fog.

Love & Spoon dust <3 Missie

Meds, meds and more meds

Well, my daily med count is up to 13. Sometimes I wonder if they're all absolutely necessary, but boy on those bad days I don't know how I would get through the day without them. Ever notice how people look at you or treat you once they realize you take pain meds? The connotation that only drug addicts take narcotic pain meds irritates me, but I don't think it will ever change. I just recently changed a few of mine and added a couple. So, despite knowing that someone will read this or more than one someone most likely, and roll their eyes and think "oh great another pill popper" I am going to share all the medicine I am on.

1) Levothyroxin 200mcg (I had a total thyroidectomy in 2005 so I have to take hormones to replace the hormone the thyroid would produce)
2) Promethazine 25mg I'm always nauseous
3) Meclizine (aka Anti-vert for vertigo)
4) Prednisone (a common Lupie med)
5) Plaquenil (another common Lupie med)
6) Relpax (migraine med)
7) Benadryl twice a day (allergies and hives)
8) Flexeril (muscle relaxer)
9) Tramadol (non-narcotic pain medicine)
10) Norco 10 (aka vicodin for pain)
11) oxycodone 5mg (pain med only for the REALLY bad days)
12) Ativan (to take after a seizure to slow the neurons in my brain and hopefully prevent another seizure)
13) Klonopin (anxiety and sleep aid)

There I said it I'm putting it all out there for the world to see! I'm tired of living in fear of what people will think of me. I have Lupus, Fibromyalgia, Seizure Disorder, Endometriosis, Migraines and acquired hypothyroidism. AND I can't take Motrin or NSAID's because I am allergic to them (hives) and my kidney Dr doesn't want me them, because of my recent kidney issues. So, yes that leaves stronger pain meds. And even if I took Motrin or Aleve, it would do nothing for the deep, severe, daily pain. 

I don't like that I have to take all these meds, I don't even want to take them most days. I sit and stare at them for hours sometimes knowing I have to take them, but just don't want to. How is it fair that I'm barely 30 and have to take so much medication to function. How is it fair that I have to hide it all from most people because they're uneducated and assume I am a druggie because of the type of meds I'm on. This is my life in all it's glory, this is Lupus, this is what invisible illness looks like.
~Sarah

New Rheumatologist

After the big scare with calcification in my kidneys, my nephrologist (kidney specialist) referred me to a Rheumatologist he highly recommended.
I was nervous for this appt as I have never been able to find a good Rheumy.

It made it worse that we had all 3 kids so hubby had to stay in the car with them while I went in by myself, which I hate doing because I always forget stuff. But, this DR was AMAZING he looked at what the nephrologist sent over and then asked me what symptoms I have are. I explained, headaches WORSE than a Migraine, constant nausea and vertigo extreme fatigue, joint pain and swelling, muscle aches and spasms, rashes, sores in my mouth and nose, and seizures.I also have Fibromyalgia and that apparently causes pseudo seizures (fake) SO, he is working on getting me a prior auth through my insurance for a Neurologist at the Hospital he is affiliated with, St Joseph's Hospital and Barrow epilepsy center. SO this hospital has a wing designated for people with neurological issues and seizures. I will be admitted for 5 days and they will watch what type of seizures I have to make sure I'm on the right track with the meds. He also mentioned that a brain biopsy will eventually have to happen. That definitely scared me, but I am putting my trust in the hands of God. I didn't make it this far to give up!

Dr Celeriu (rheumy) upped my plaquenil dose and added 10mg prednisone to take daily. He said if things get much worse at all or the monitoring or brain biopsy of the brain shows something more severe or I just simply don't respond to treatment, the next step would be chemotherapy. This is something we all don't really want unless it is absolutely necessary!

But I have high hopes for this rheumatologist and the neurologist he sends me to.
PCP appt tomorrow, my favorite day of the month when I can get all of my medicine! Fingers Crossed my blood pressure isn't high again!

~~Sarah

Painful Fatigue

Fatigue: Extreme tiredness, typically resulting from mental or physical exertion or illness

I am so fatigued today, painfully fatigued. I look the faces of my sweet angels who just want Mommy to play with them. But, I just can't.It takes every ounce of energy I have just to go to the bathroom. 

My muscles are fatigued as well. I have no strength to lift my arms straight up, or to hold my cell phone, let alone pick one of the kids up.

But, being a Mom, I know I have to suck it up. These kids are depending on me, and it already breaks my heart how my 5 year old handles this all, so brave, calm and understanding. I don't want to miss a moment of my babies growing up, but Lupus has other plans for me! I also hate not going out with friends and family, but I do send my husband and the kids while I stay home. There is usually a lot of talk about that. But, I choose to save my energy for my husband and kids,

I have given up do much to this disease, lost friends and even family members because I'm "different" I know people may not mean to be this way as they just don't understand. Just feels as soon as things for me got more serious and I gave up certain roles, nobody cares anymore. I think that's the one thing I can thank Lupus for, showing me the real side of people. Knowing the people I can trust in an emergency.

Lupus SUCKS it strips us down to almost nothing, it strips relationships from us, it's an invisvble illness so NO ONE believes you're sick. All we have is each other. Jen, Missie, and I are always here to offer support in any way we can. And I'm sure there will be days that we could use the encouragement!

~~Sarah

Hello, Missie here. So sorry that it's taken a little over a month to write my first entry! This past month has not only been hard on me, but also my two lovely Lupie Sisters, Jen & Sarah. We started this blog to share our individual journeys that we're taking together on this horrible ride called Lupus. As I'm typing this I have to take breaks because my arthritis is literally screaming at me! All I have to take for the pain really is Aleeve. I currently do not have any health insurance so I can not go to the doctor. This makes it extremely hard because I need medical attention, Lupus is a dangerous beast to battle without it. I have filled out the forms to get my Medicaid turned back on, just playing the stupid waiting game with them.

So far this month my biggest cause of stress is over! My wonderful daughter, Emma, turned two years old! Her birthday party was a big stress to me because my husband has such a big family. Well if I had known then what I know now I wouldn't of stressed so much (maybe). Apparently no one RSVPs anymore so we bought a ton of food for people who decided we didn't need to know they weren't coming. A little over half of the people we invited didn't come. But important people in Emma's life did show, and I found out after that either they were sick or had a kiddo that was sick so I'm glad they stayed away! Emma had a good time so that's all that really matters!

Besides the Lupus, I also suffer with Endometriosis and Seizures. During Emma's birthday party people kept asking me if I was okay, and all I could say in response was "pain". Because I while I was enjoying watching Emma play I was hiding all my pain behind a smile. Even though she's two and most likely won't remember the day I wanted her to know Mommy was enjoying her big day as well. I kept getting jabs of sharp pain in my abdomen because of my Endometriosis. If you're wondering what Endometriosis is:

"Endometriosis is the abnormal growth of cells (endometrial cells) similar to those that form the inside of the uterus, but in a location outside of the uterus. Endometrial cells are cells that are shed each month during menstruation. The cells of endometriosis attach themselves to tissue outside the uterus and are called endometriosis implants. These implants are most commonly found on the ovaries, the Fallopian tubes, outer surfaces of the uterus or intestines, and on the surface lining of the pelvic cavity. They can also be found in the vagina, cervix, and bladder, although less commonly than other locations in the pelvis. Rarely, endometriosis implants can occur outside the pelvis, on the liver, in old surgery scars, and even in or around the lung or brain. Endometrial implants, while they can cause problems, are benign (not cancerous)."

-- www.medicinenet.com

Introduction

The story of three friends; Missie, Sarah and Jen who found each other on Instagram, and now share with each other their struggles and overcoming while living with SLE  Lupus.

As we battle together, we live with the hope that one day a cure for Systemic Lupus Erythematosus  is found and in the mean time we are here together, spreading awareness.
Here you will get to know us, cry and laugh with us and hope for the cure too.

One disease with no cure and 3 friends that found the courage and the strength to go on, and today although one disease unites us, so is the hope and the love we share as sisters.

Follow us now and learn our stories, help spread awareness and hope for a cure for this terrible disease that kills thousands of people every year. Lupus. 

Love, hope and many spoons,

Missie Clements, Sarah Folkner & Jen McCulley-Montes