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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***

Learning to Celebrate Small Wins With Chronic Disease 

Learning to Celebrate Small Wins With Chronic Disease 

I feel like I continually write about the challenges of chronic illness. It’s often hard to see passed all the pain. How is it possible to be happy when your body is betraying you? It can be hard to celebrate any type of “win”. What normal person celebrates getting out of the house or taking a shower. Those are just things any regular person does. It’s easy, right? For you or me those are wins. That means we conquered something even if it causes pain later. We did something for us. 

I’m determined to focus on good. It’s the only way to get through all the ups and downs. Between Lupus and Ehlers Danlos I often get lost in the harsh symptoms. I forget to celebrate the wins even if they’re tiny. I am elated to say, after detailing my concerns with my doctor and adjusting my medications, my hair is not falling out in clumps anymore!!! Happy is the only word that can describe how I feel. 

FINALLY!!!

It’s been about three years of my hair falling out. I, at first thought, it was due to me giving birth. It happened with my two boys, as time went on the amount of hair became alarming. I thought wow, this is happening for an extended amount of time.  I reasoned it was because I was older or maybe my hormones were different because I had a baby girl.  Silly right

I know now I was naive in thinking that. I see things so differently in hindsight. There were other symptoms that I didn’t recognize,  I had extremly high levels of anxiety ( didn’t know it was anxiety) and again thought hormones, because I breastfed for eighteen months (yes, 1.5 years). In my mind there had to be an explanation for everything. I couldn’t go in the sun because I had sensitive skin. I was tired because I was a stay at home Mom of three plus I wasn’t as young as when I had my first two.  I really had a reason for everything. 

It made so much sense to me at time. I realize I was kidding myself.  I didn’t  give myself time to recognize there was stuff going on beyond my control. I needed help. 

As my diseases progressed other symptoms creeped in. I had a A HA! moment at one of my doctors appointments. All this “stuff”, even way back when, was due to my diseases/ syndromes progressing. I was so clueless of all the symptoms being linked or how much it could rule my world. 

In a odd way I was relieved. 

Ummm so, I’m not crazy!? I actually have REAL things going on.  Talk about a sigh of relief met with a gasp of oh my this is going to be forever?? 

It’s been challenging. There hasn’t  been a day that Lupus, Ehlers Danlos, or the unpleasant symptoms that come with them hasn’t affected me.

However, I feel like I’ve had a small victory. I have to celebrate the ones I get. 

I got my hair back! Well, not all the way but it’s looking a heck of a lot better. When I shower I’m no longer afraid of seeing handfuls of hair. Honestly, barely any falls out! 

It’s seriously feels like some kind of miracle!

I am new at this. I’ve had health issues since my daughter was born but went undiagnosed. The journey has been long and tidious. Finally being diagnosed has been life changing. My diseases/ syndromes are getting under control and I feel like I’m getting part of my life back. 

I know I’ll never be where I was, although it is the goal. I’m living a new normal and I’m thankful for the passion it has brought to me. All my fellow spoonies I’ve met is one of my biggest blessings through this. I’m not alone. There are people that understand. I can’t thank you enough. 

What’s the point of the post? Simple. Believe it’ll get better. 
Let’s appreciate today, yesterday, and tomorrow. It’s another day to fight and figure out how we can help ourselves. My small win is my hair. Yours could be anything, from getting out of bed or talking with a friend . We have to appreciate what we conquer, know a win is a win, and face our challenges with hope and determination. 

It’s possible. It has to be. 

••If you’re dealing with the same issues please don’t hesitate to message me. I am active on Twitter @_crazywonderful or you can email me. I will tell you what my doctor prescribed and maybe it will work for you.••
*** wrote freehand with limited edits, please be kind, thank you***

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.

Dealing with The Constant Change with Lupus

Dealing with The Constant Change with Lupus

This weekend was a whole new experience for me. Many of us with chronic disease try to fight for any independence possible. Whether it’s going to the store alone or indulging in our favorite hobby. I, for once, had to let go of all reservations and recognize assistance was the only option. For the first time, my husband pushed me in my wheelchair.

It wasn’t a rented or a temporary one. It’s actually mine, prescribed to me by my doctor, because I need it. When it showed up I was not sure how to feel. Should I be happy that I can get out more? Should I be ashamed that I need it? My feelings were all over. I am a thirty-four year old woman that looks healthy but can hardly walk/ stand for long periods. It’s not just Lupus that causes this issue. I also have Joint Hypermobilty Syndrome and Fibromyalgia. The combination makes it almost impossible to do much without pain.

I don’t want to get lost, I am grateful for my wheelchair. My point was more that I never thought it would get to needing one. I thought somehow I would get better. Getting pushed around in my neighborhood on my family walk made me so anxious. I kept thinking what if the neighbors see me? Or what of people don’t think I really need it? I don’t know why I even care. My kids were so happy to have me with them. Their smiles and nonstop talking helped calm me. They seemed so okay with seeing their mom being pushed in her wheelchair by their Daddy.

I realize I need to be more like my kids. They just want to go! They’re so resilient. Anytime I’m unable to do something because of Lupus or any of my chronic issues there is no hesitation. They don’t get upset, they don’t tell me they wish I was a “normal” mom. That’s me, I want that. I get upset. I am embarrassed.

It’s silly really, why should I be shameful of this? The lack of control is obvious. The ever changing symptoms are constant. Nobody would choose this. All the the adjustments you have to make, the relationships you loose, the dependence created. I’d rather just not go out. No walking equals no wheelchair which means no dependence.

You know what really happens though? I miss out. That day is forever gone. Wasted. I don’t get to enjoy the night air or hear my kids laugh. I miss out on life. I’ve tried to be tough through this. I have fought. I will continue to fight but I have been humbled in knowing it’s okay to need help. I lean on my loved ones and let them know how very much their support means to me.

I have a wheelchair. I need a wheelchair. I am not limited because of it, I am getting the chance to experience life in a whole new way. I am willing to make the adjustments needed in order for my quality of life to be at it’s best. Maybe it’s not what I thought it would be, that’s okay. I get the chance to live at the best of my ability. I refuse to give in, I am not stopping. 

 

 

 

 

 

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

Three Tips To Help Deal with Lupus

Three Tips To Help Deal with Lupus

Let me start off by saying that it took a long time for me to feel like I could enjoy life again. Not because I didn’t want to, but because I didn’t know how to with all the pain I was in. There were so many days lumped together that became a blur. All I hoped for was my pain to ease and my mind to clear. Time after time I just wanted comfort. I hoped there would be a day I’d go back to “normal” again. Then, one day I finally realized this is my new normal, this is my life, and I had to find a way to live it the best way I could.

I am not an expert when it comes to Lupus. I am just a woman who has it and tries countless things to live my best possible life. What works for me may not work for you. That is completely okay. Everyone’s experience with this disease is different. I just want to build a community where we can talk and be there for one another.

There is a lot of things I have changed in my life in order to adjust. Instead of giving you a long drawn out list that you barely skim through I want to share three quick tips that have helped me put my mind at ease. When I started progressing with Lupus I felt lost and very alone, even with loved ones around me, I still do at times. It can be very isolating to know something is wrong but not be able to figure it out. In my case, it took two years for a diagnosis and to be put on the correct medicines. I am not perfect, I have more setbacks than I’d like, but I am LIVING. I refuse to stop pushing, with these three steps I tend to be able to do that with a little more grace.

ONE: Listen to your body.

I know that seems pretty self explanatory but when you have Lupus your body/ mind can feel like its playing tricks on you. There are so many ups and downs, twist and turns, it’s easy to feel discombobulated. What may feel like a small headache can turn into a full blown flare, or you feel like you need a nap but skip it…because do you really need it?? You may think you can totally push yourself to do that extra chore or time with friends, but you end up being out of it for days, weeks, or longer. That’s the thing I learned from Lupus it’s never a couple hours of recovery when you misstep. It takes a lot of time to heal. It’s an exhausting disease, if you feel tired then sleep, if your body say’s no gluten then don’t eat gluten, if it hates the sun then stay out if it. There’s things you can do to try and prevent flares but it is vital you get in tune to what your body is telling you. Once you start listening to your body you’ll be able to communicate clearer to your loved ones and Doctors.

TWO: Don’t waste your time.

Lupus warriors have limited energy. A lot of times our days are dictated by how we feel. Don’t spend time doing things you hate or with toxic people. This was probably the hardest step for me. It is especially hard if you’re a “yes” person. I learned to focus in on what really mattered to me, what/ who I valued, and with those who felt mutually. It’s not worth it to constantly be making yourself sick because your loved ones don’t get it or to feel guilt. You have to learn to love you. There’s no other way. Time is precious.

THREE: Stay away from stress.

This may not always be avoidable but when it is STEP AWAY. Stress is almost a sure way to have a flare of some type. Evaluate what are absolute things you need to be thinking about and what you can remove. This can be from dealing with people to things. If it stresses you out and you don’t NEED it, delete it. I know it’s not always that simple but with practice it gets a bit easier. An extra tip is I clearly stated to all my loved ones that stress is a no-no for me and I didn’t want any part of it. They either respect it or don’t (if they don’t refer to tip TWO.)

Look, Lupus isn’t going  to magically go away. Although we all wish it would. It is a part of our lives that we now have to consider at all times. I love myself enough to make the adjustments needed to be a better warrior, wife, mom, sister, daughter, and friend. I hope you do the same. We are not alone, we have each other, this network of people fighting to live their best lives with a nasty beast called Lupus. Just keep fighting… KEEP GOING.

 

 

 

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

 

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.

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.

Why Do a Seven Day Blog Challenge!??

Why Do a Seven Day Blog Challenge!??

I want to elaborate about why I decided to do something so unconventional for myself. I could draw out my explanation but to put it simply I needed to wake up!! This is the figurative splash of water on my face. I NEED to get out of my daze of normal. If I am comfortable I like to stay there and that is not necessarily what’s best.

I thought what could I do, for myself, that would get me out of my comfort zone. Remember, I despise being uncomfortable. I’m a overplanner, worrier, always have a plan B type of gal. So, with that, I decided to throw away all my “rules” and just jump in.

I created a simple guideline for myself.

1. All my post will be freehand with very limited edits.

2. I will be open and hope to break through a barrier I’ve created within myself.

3. & Lastly, I hope to not miss any days.

I am not going for lengthy post rather more quality post about life. I want to be raw, unedited.

If you decide to join me in this challenge it is all about self-awareness and growth. Whatever that means to you. You can tag me via twitter or is the hashtag #crazywonderful.

Life is about discovery. Push your limits. There’s so much out there to experience.

Let’s do this!!

Post one done…phew… hope to see you back here tomorrow! 

#crazywonderful