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Goals for 2018 *[Plus HUGE Announcement]*

Goals for 2018 *[Plus HUGE Announcement]*

Every year I set goals for myself. They aren’t so much resolutions but more so accomplishments I’d like to reach in the New Year. Sometimes I meet all of what I set out toward and other times I fail miserably. These include any type of goal from small to big, simple to complex. For me, it’s about setting them and working toward it.  My goals range vastly. This year I am focused bettering the quality of my life. I am determined to take the steps toward self-improvement. Here’s a snippet of what I am setting out to accomplish this year…

First things first, I want to start my day every morning with some discipline and end it with relaxation. One of the simplest ways I know I can accomplish this is simply making my bed Every. Single. Day. (or as often as possible). This is a way for me to have structure combined with some calm. This is something so easy that I have always attempted. One year I will actually do it regularly, I use to but a lot has changed.

On that note, I plan to get out of my house at least once a week. I know that may sound weird but bare with me… between Lupus, Ehlers Danlos, Fibromyalgia, and all the o’ so fun symptoms that come with them I often find myself closed off from everything. If it doesn’t have to do with my husband, kids, or the family the refuses to let me hid I am a hermit.

I can go weeks without stepping out my front door ( I know that is so not okay). I have to live a better quality life, I need to get out. Even if that means I get pushed in my wheelchair. It’s unhealthy for me not see life outside my home. Whether I’m out for ten minutes or an hour I HAVE to get out.

This leads into my next goal. Through all my health issues I found my voice, I learned to advocate for myself, and was forced to research A LOT of information. I realized I’m not alone, many of us with chronic illness go through the same difficulties. My biggest goal in 2018 is to launch my business venture helping others with similar issues.

Let me give some details, as Lupus progressed throughout my body I began to realize I had a reaction to certain foods, makeup, lip balms, etc. After a TON of research and pain I finally narrowed it down. I discovered I developed a gluten intolerance. I found it challenging to find quality gluten free items including vitamins, beauty, and other essential products. It was alarming to me to find just how hard it was to get what I needed.

I am proud so say with the help of my husband and mom we created a company that will offer ALL gluten free products. My constant research has paid off and I want to share it with everyone! The line will include products like face wash and lip balms with the addition of more items throughout the year. The great thing is these products aren’t exclusive to people struggling with Lupus or a gluten intolerance.

To say I am excited and feel blessed would be an understatement. Having the chance to help others that struggle with similar issues is such a blessing.

We will be launching online early this year.  So, I guess this is my impromptu announcement…

 

NixEssentials.com coming soon!!

 

 

This year is going to be a good year. I can feel it in my bones. I am looking forward to so much. I’m determined to soak in all I can. My hope is that each of you have set goals and are willing to work your a** off the reach them. No matter if they are big or small, simple or complex, GO FOR IT!

 

 

***Written freehand with limited edit, Please be kind, Thank you***

Going into 2018 with Continued Hope.

Going into 2018 with Continued Hope.

It’s 2018!!

Let me jump right into my thoughts on 2017 & what I see for 2018…

2017 is kind of a blur for me. A lot changed and I was challenged in ways I never even imagined. I lived in constant pain and depended on people more than I would of ever liked. I always prided myself on independence and good health. Both of those things were stripped away from me. I was taught it was okay to need people and be vulnerable. Two lessons I didn’t think I needed to be taught.

There was a lot of trials with some triumphs. I am going into 2018 with the continued hope that my health issues will improve. This year I want to take on challenges with grace and acceptance of my “normal”, New Year, New boundaries to be pushed and broken.

The past few years have been a true test of my strength. I was taught to listen to my body, put my needs first, and learned how to fight for myself.  I still can’t believe that I finally have some answers, I am [actually] doing better. I started to believe I would always live in intense pain. I am in no means cured but I have improved, I found a Doctor that took me seriously… I have a chance at living, not just being alive.

To say I was scared would be an understatement. I tried to stay positive but it wasn’t easy. Day after day I was battling this beast of a disease, Lupus is hell, Ehlers Danlos is hell, they both have additional symptoms that are crap (excuse my language this is my truth). Here’s the thing, although I am struggling I’ve never thought that this will be forever. I’ve fought like heck. I have made some improvements, and for that I am so thankful.

My issues aren’t gone. I’m still a work in progress I believe one day I’ll be back to doing all the stuff I use to, I  know most of my symptoms will subside… maybe I am being a fool, but I am a hopeful fool. Right now, I still can’t do much but I can do some, and that is better than doing nothing.

I am a blessed woman. There’s no other way to put it. I have a chance. 2018 is my year of improvement, I am going to grow, I am going to prosper, most of all I am going to live. I’ll be happy, I’ll struggle, I’ll accept, and I’ll love like crazy!

Happy New Year everyone!

 

 

***Written freehand with limited edits, Please be kind, Thank you***

Is Being Selfish Necessary with Chronic Disease?

Is Being Selfish Necessary with Chronic Disease?

Have you ever sat back and realized how selfish you are? No matter what you do, you have to think of yourself first, and then you can worry about others. For me, it feels so foreign. I have always felt pride in being that person people can count on. The one that will always listen and be there however I can.  Now, it’s all about me, no matter how hard I try to make it not be. It took me a long time to recognize that it’s not that I don’t want to be that person, but more I can’t be.

When it comes to chronic illness you have to learn boundaries. You have to accept that your health will be affected by the smallest things. Maybe that means being selfish, but I’d rather take care of myself than be sick. People might get tired of the constant talk of new symptoms or the phrase “I can’t because of…”  but this is your forever. We can get better, no we will get better but we can’t pretend to be what we are not. We have to continually monitor our health and there are no short cuts.

A lot of times I feel like a bad mom, wife, friend, sister, daughter, etc. I want to be a stronger force in the people I love lives. I want to listen to crazy things happening or enjoy barbecuing together. I’d love to have energy for an entire day to shop and go out to eat. I want them to know I love them dearly, and try everyday to feel good, so I can get to those things. I have as many good thoughts as I can (because that’s the cure, right!?). I meet every negative with twice as much positives. I work hard to get better so I can be me. I fight to show I care. I get overwhelmed when thinking this might be the new me. The all about me, me.

This isn’t something I can outrun or hide from. I tried, and failed miserably. It only made my health worse. So, I guess the question is can there be balance between maintaining my health and relationships?

The last few years of dealing with all these ups and downs I’ve been taught many lessons. I learned to not be so hard on myself or others. I learned to be okay with not being in complete control of absolutely everything. I’ve accepted some relationships aren’t meant to be. I have accepted that I will always have to manage my disease. Most of all I have realized there are no mistakes, I was suppose to learn something from this, and I am so lucky I did.

I am not going to feel bad. This is the way it is. I love myself enough to know being selfish is what is necessary.  I can love my loved ones harder because I am taking care of me. Any other way just won’t work. Realizing it’s okay to put me first so I can enjoy my life and the people in it has made this whole process a little easier. Getting rid of the guilt has been a challenge that I continue to maneuver through. I’ve learned the best thing I can do is to keep pushing. I refuse to give in, I met each battle with the eagerness to win.

One day it will be second nature to me. I have to take care of me first, so I can love you harder. That’s just the way it goes. In reality everyone has to do that not just those with chronic illness. If we loose ourselves in caring for others we forget how to care for ourselves, and it will catch up to us. I guess the lesson is that it’s okay to be selfish. Not in the only about me way but the I need this so I can do that way. I am going to love me because I am worth it.

***wrote freehand with limited edits, please be kind***

Learning to Not Be Ashamed of My Wheelchair

Learning to Not Be Ashamed of My Wheelchair

I’ve told myself on repeat to not be ashamed of my wheelchair. That it’s okay, and if anyone has a problem it’s their issue not mine. I stand by that, I really do. My feelings morph into anxiety and resentment when people I know personally see me in it. It’s my little secret I like to keep to myself. The look on their face is so disheartening.  They almost seem fearful, completely shocked, and mostly confused. I know I have to take care of myself but can’t I have just this one thing not be known to everyone. Will I ever be okay with this? It’s so hard to constantly process everything thrown your with chronic health issues.

I don’t expect others to get this. I barely do. That’s why I feel it’s easier for nobody to know. I don’t have to explain if I look perfectly okay. It’s naive for any of us to think that way though. When we don’t tell, we are faking it. We are hurting ourselves out of fear. Fear of judgement, fear of pity, fear of being looked at differently, I can keep going. So we keep pushing ourselves, we keep causing harm, because we think we can tough through it. They don’t have to see us laying out on our bed in intense pain, or skipping a shower because we’re tired and it’s too much work, they don’t see us cry in despair… because we are strong. I am strong. YOU are strong.

I began to question that thought process. I am putting myself in agony to benefit who? It can’t be for me or my family. I don’t go out, I am moody as heck, my body throbs, all for what!? The hope nobody will notice? Yes, they saw me in a wheelchair. I sure didn’t want them too. I was not ready at all (I don’t know if I ever will be). It could be worse…It always could be worse.  I’m insecure constantly trying to fake I’m okay with all this. But honestly, who would be?

The fact is I need to suck it up. My kids need me, they need me there and not putting myself in more pain than I already am. I found my motivating force. What gets me through the toughest of days. We all need that, to know it’s all worth it. Understanding there’s a bigger force that will get you through.

Life will continue to go on, whether we choose to join in on it or not depends largely on us. There will be bad days. Times that it feels nearly impossible. When you can’t move or don’t want to. That’s okay. You can’t give up on tomorrow. You have to refuse to think of the impossible and instead dream of the possible.

There will be one day where the sky seems bluer and the stars shine brighter. The change won’t be because they are but rather in how you view them. The appreciation for that specific time, that day. So, what’s my point? I hope one day that appreciation happens with my love-hate relationship with my wheelchair. That I will be able to see people I know personally and think “Wow, at least I had the chance to see them.” I’ll get there, I know I will…till then I’ll marvel at the fact I have come this far. I am active about my health, I share my story, and have began to connect with others with similar issues. I’ve already jumped some of my biggest hurdles. Thank you for being on this journey with me.

Where Have I been….

Where Have I been….

I don’t mean to disappear. A lot of the times I have to choose between resting, spending time with my family, or blogging. I work hard to manage my energy and time. If something has to give it’s going to be my blog. Not because I don’t love it, this is my favorite thing to do. To have the ability to communicate with others is such blessing. This is just mine, I don’t do it for my family or to gain notoriety, I do it for me. I absolutely hate that any length of time goes by without publishing a post. I am not sure how to rectify posting more consistently but I am thankful for those who continue to join in.

I wanted to write a quick post explaining where I have been. My health is up and down as I have talked in length about. My hope is that eventually my meds will kick in and I can communicate with everyone on a regular basis. I feel so lucky to have found a way to talk with others about lupus, fibro, ehlers danlos and everything in between. Not feeling so alone has been a tremendous boost in my morale. I am so thankful for those who have stuck with me.

I am planning on posting this week. I have a lot to say (per usual). This twisted road seems to never end but I am determined to handle it with grace. I have to find some type of stability. Blogging gives me a way to let it all out and regain some composure. That’s one of the most important steps, having something just for you. So, needless to say I will be putting more effort into what helps me. I’d Love to hear what helps others. Next post will be up Thursday!

 

Have a great week!!

 

 

 

** Wrote freehand with limited edits, please be kind**

Bonding with Others who Have Chronic Illness

Bonding with Others who Have Chronic Illness

Most of the time when I sit here I simply write what comes to my mind. I am not a professional in any sense. I am just a person who created an outlet because I felt alone. It’s not that I don’t have loved ones that care, it was more like they don’t understand. I feel lonely and isolated. They don’t mean to exclude me, they just don’t get it. That has caused so much anxiety within me. I felt confused and almost ashamed of this nasty beast called Lupus. It has taken me up to this point to be open and unapologetic. I am ready to be an open book, I want to connect with others going through the same issues, and most of all I need to accept that this is not my fault.

Yes, I blamed myself for this. I played the could of, would of, should of game. What if I did this or that instead. There were so many questions that would swirl in my head when all of this first started. As my disease progressed I felt overwhelmed and clueless as what was next. Especially because doctor after doctor made me feel like I may just be a crazy woman. I, for sure, thought this could all very well be all in my head. I thank God I had the fortitude to not give up and advocate for myself.

The short story is this, I don’t want any person to feel alone when dealing with chronic illness. There’s a whole community of people that need to connect. We all need to lean on each other because we are the ones who truly get it. In the last month I have just laid it all out there. I have talked about my health with an odd confidence. In the strangest way it made me feel more in control. I have been diagnosed with a list of issues but the top four would be: Lupus, Fibromyalgia, Joint Hypermobility Syndrome, and IBS. I can finally say that without being scared of judgement.

A lot of people fear what they don’t understand or put down what they don’t know. Well, something I never thought I would need came this week, I received my wheelchair. This was a huge step for me, I have fought getting one. I was encouraged to move forward but I was scared. I didn’t want people to see me in a wheelchair and think I didn’t need it or even worse think I was disabled. You know what? I am disabled. I said it. I need the assistance of a wheelchair, I need help from others, I am unable to do daily tasks on my own, and I refuse to feel shame any longer. I need to focus on my quality of life. Lying to myself or being fearful of what others think will only hold me back from living MY best life.

So, I (kind of) went off on a random tangent. I figured if I have these thoughts running through my mind others may be experiencing the same. I am only one person trying to get through everyday with chronic pain (among other issues). I’ve realized how much I value building relationships with others experiencing this. People that without question after question know what you’re describing. You guys are my people, we get each other and I need that. The encouragement that together we can get through it.

Tomorrow is going to be another day that we all are blessed enough to live. We may not get to run outside, climb mountains, or simply clean our homes but we get another day. I am going to enjoy my children’s laughter, hold my husband as tight as my body allows, and indulge in the healthiest unhealthy food I can. What will you do? My hope is there is at least one thing that makes your day shine a little brighter.

Is it Possible for Relationships to Survive Lupus?

Is it Possible for Relationships to Survive Lupus?

I was recently asked what has changed the most regarding my Lupus diagnosis. I replied “everything” because in reality that is the exact truth. There’s not a part of my life that hasn’t been touched in one way or another by this disease. I take medicine daily, I don’t go in the sun, I avoid being out of the house too long or at all, I lean on others more than I ever have, I lack energy, I eat completely different foods, and on & on. The list is long and it gets a bit depressing to talk about. After thinking about the question I realized there was one key word. What has changed the most... and I immediately knew it was my relationships with others. Simply said, the ones that matter will be there and those that don’t won’t.

Ok, okay. It’s actually not that easy.  There’s a lot of growing pains and heartache. There was for me anyway. I learned a ton about myself, the people I thought would be there, & the people that actually were. The thing is, nobody is really prepared to go through anything like this. The daily ups and many downs of a chronic illness. The constant cancelled plans because you can’t move without pain or the continuous need for help .The desperation for understanding with acceptance and unconditional love. It is a monumental type of thing to take on, you can’t half-ass your love for someone with this disease. That also goes hand in hand with the person experiencing Lupus not being able to put energy into something that will cause them hurt or stress.

Let’ just put this out there as clear as possible, Lupus and stress just don’t go… even more so Lupus and sh*tty people are a big o’ no no. Let me spell it out IT’S NOT WORTH IT. There are only so many hours in everyday. We (people with Lupus) sometimes (most of the time) only get a very little bit of time everyday to feel somewhat good. I will be damned if I am going to waste it on people who don’t value me or me not value them. What would be the point!? Spend your time with those you love and love them fiercely!

I was really surprised by the change of most of my relationships. There were two people that didn’t surprise me at all and I am so very thankful for them. There is one person that has been there for it all, the very worst of the sicknesses and aches. The person that will pick up the pieces when my brain just can’t. In all honesty, I only have a handful of people that continuously FOUGHT to be by my side. No matter how hard I tried to push them away. When I say a handful, I mean exactly five people.

I use to think you needed an army of people or the more that were in your corner the happier you would be. Although my circle has always been small, it’s teeny tiny now… maybe like half a circle. I started to recognize patterns in people and it zapped my energy. I felt completely drained after being around them. There were also the people that if I wasn’t able to offer some kind of value to their life then they didn’t need me. Like me, just being low energy and sick but still me was not enough. It was such a confusing time. Not only was I learning I have some serious health issues but I was also learning how to deal with the unexpected change in all my relationships.

There were some people that I firmly believed would always be by my side no matter what. That there was no way in heck we weren’t going to be an active part of each others lives. but somehow, someway they just weren’t there. It’s as though they vanished. Why? I don’t know. They say one thing. I see another. I still love them dearly but those relationships have to fall to the side. I realized I HAD to be selfish and if those relationships could not survive my health issues then maybe they weren’t as valuable as I thought.

So, What is the biggest change since Lupus has slowly taken over my life? The people I have in it. I am more aware who I spend my time with, who I let in. I have a clearer picture of the people that love me unconditionally and are okay with me being vulnerable. I know who I can lean on and trust. 

It’s another one of the twisted weird gifts Lupus has given me. I’ll forever be grateful for each and every person that has been there for me through this. That love is something I can’t ever put into words. For them and for me I am going to keep fighting like the warrior I am.

Lupus POOPUS, Finding The Positive

Lupus POOPUS, Finding The Positive

I have to say, I would of never taking this many leaps in my life if it wasn’t for Lupus. Uggghhhh, You ever get tired of hearing the name of your nemesis?? In my case it’s Lupus POOPUS. I know..I know such a clever play on words. That’s what happens when you have three kids and have to explain the challenges of poopy Lupus. Damn! There’s that word again! Before I even knew why I was experiencing so many issues I decided it was time for my outlook to change. I gained the greatest gift through my hardest trial.

Just picture me, a mom of three, looks perfectly healthy (maybe even fit to some), slender, tall, active with my children. I take pride in my family and household. I chose to be an at home Mom from the time my oldest was born. I did ALL the daily tasks that makes a typical home run. I was vibrant and sassy. I played with my kids, dance parties in the living room, why not!? Playing sports outside, duh! Going to the park, always…

Then, a slow progression, that I desperately tried to ignore took over.

The active, playful, keep everything in order mom became the no energy, fatigued, always in pain, laid out on the sofa mom.

This is the woman that prided herself on a clean home and helping her kids with their homework every night. I became lifeless. It hurt to move, everything became a daily challenge.

I know it sounds dim. This isn’t for the faint of heart, for the ones that want to sulk. It will eat you alive if you maintain that perspective. I could tell you all about my hair falling out in clumps or being in severe pain after each shower (yes, all those movements cause pain), I can focus on my fingers hurting all the time (even as I type) along with every other joint, I can complain that I can’t sit anywhere for long periods (esp in vehicles), don’t even get me started about having to dodge UV rays (I’m basically a vampire), or lastly (for the sake of this post) how I’ve had to change my whole lifestyle including my diet. Yes, I could talk about all that, in great length actually but what the heck does that do for me, nada! If I am being true to myself and who I am all this has been the most twisted gift I have ever received.

The feeling of no control and not being able to live fully gave me the beautiful perspective of how valuable LIVING is (DUH! you’d think I already knew that concept). Not just being alive but actually living. Making conscious choices for my everyday and finding the good. Look, we all have things to be upset about. WE ALL HAVE A STORY. Who says mine is easier or tougher than yours? It’s up to me to say, Girl get it together and live yo life! (side note: I purposefully put yo not an error) I started to see things I took for granted. The smallest things made me so freakin happy.

As I am writing this I kind of giggle. One of the things that make me super excited is whenever I find out something I love is gluten-free. This can be make-up, food, hygiene products, whatever…. I never realized how much of our daily lives have that one ingredient, and that one ingredient can cause me a whole lot of being  in uncomfortable pain. Another thing is whenever I go to a Doctor’s office ( bc I am always at one) and they have comfy chairs. I get giddy like yeeessss my body is going to ache a little less from this. I mean, it really is the small things!

I was forced out of my norm. I know I was not doing my best, I know I was just going with the flow not pushing myself to achieve. I oddly feel I am more positive due to my experience. I see the value in easily getting out of bed every morning or being able to go grocery shopping, just being able to be active in any sort of way is a gift.

There has been a lot of trials but more triumphs. Specifically in my relationships with my loved ones. I have been able to love harder, my circle of people got tighter, I have MY tribe. The ones that refuse to leave my side. There’s no greater feeling than to know you are loved even when you’re in your most difficult stage of life.

I am amazed at how much Lupus POOPUS has changed my life. Not the parts of my body that hurt or the adjustments I needed to make but instead my appreciation for everyday. I fell in love with myself. I love my husband and kids more. I repaired relationships and let go of toxic ones. I put value into what I put my energy toward and refuse to waste on things/ people that don’t matter.

In a crazy way Lupus POOPUS has forced me to find what makes me happy. I am a blessed woman. Lupus is NOT my burden, it’s given me strength. I will LIVE with it every day with pride and awareness. I have forever been humbled but I am learning to handle this journey with grace. Lupus does NOT define me, I define Lupus. I am a warrior!

 

Is Failure Our Chance To Learn?

Is Failure Our Chance To Learn?

There was a time in my life that I would say ” I failed, I quit, I can’t do it.” I’d basically sabotage myself with a single mistake. My thoughts went right into me not being good enough or somehow thinking I am not capable. I’m not even sure where that thought process came from but it was there… for many many years. It took for me to go through all these dang health issues to realize I wasn’t being realistic. I mean, really let’s think about this, I fail… ok, if I am being fair to myself shouldn’t it be my opportunity to learn? It’s more like our failures and trials make us strong.

I’ve finally embraced that thought process. I had no choice but to accept it. If I never got to this point I’d be miserable. There has been plenty of ups and downs. Now, I gladly take the all. I’ve learned to say THANK YOU.

I fall…thank you, I soar… thank you, I mess up… thank you, I triumph… thank you.

Do you know why I say thank you!?

Because I get the chance to experience it all. To feel it, to cry, laugh, scream. To have the opportunity to learn from it and celebrate.

I get to celebrate my failures. Yes, my failures. I had the chance to try at least. To go after whatever I wanted to work toward. If I don’t succeed, guess what!? I get to try again. That is the beautiful thing. There’s no stopping till we say stop, till we give up, and I am not about to do that!

The crazy thing is it took a very long time for me to give myself permission to feel this way. It happened because I’ve gone through the most challenging time in my life. I realized damn it if I can get through this why the heck did I ever hold myself back, why didn’t I believe in myself!? I am so much stronger and resilient than I ever gave myself credit for.

So, here I am. I failed. I didn’t accomplish something I set out to do. I actually failed pretty miserably. Whether it was in my control or not, I set a goal and I wasn’t even close to meeting it. I gained a lot of perspective, I was able to see the adjustments I needed to make and not beat myself up over it. I felt pretty bad though but would of felt worse if I didn’t dust myself off.

That’s my only choice, to not give in. I won’t allow it. I hope you don’t either. We are challenged in order to get us to the next level. I face my failures with pride. Believe in your vision and don’t stop till you get there!

Keep Going!!

 

 

 

 

*** Please be kind, wrote freehand with limited edits, Thank you!****

 

 

You Hurt Me, but I Will Get Through the Pain.

You Hurt Me, but I Will Get Through the Pain.

You hurt me, my heart will never be the same.

You hurt me, now everything has changed.

You hurt me, I’m not sure I’ll ever trust again.

You hurt me, I need to love me instead.

You hurt me, I won’t let you win.

You hurt me, I’ll learn to be my own person.

You hurt me, all my strength has been tested.

You hurt me, I refuse to hold it in.

You hurt me, I’m moving on carefully.

You hurt me, I’m determined to get through it.

You hurt me, the pain still strong as ever.

You hurt me, I must forgive to move on.

You hurt me, my mind and heart will be free.

You hurt me, I refuse to be hateful because of your stupidity.

You hurt me, I rose above.

You hurt me, I was so lost.

You hurt me, I dwelled on it way too long.

You hurt me, now I’m strong.

You hurt me, but now I’m happy.

You hurt me, I love myself more than ever.

You hurt me, I’m so thankful it didn’t take forever.

You hurt me, this is my external sigh.

You hurt me, I can finally say good-bye.