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!