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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.

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.

Today is one of those days: Chronic Illness

Today is one of those days: Chronic Illness

Today is one of those days. Every part of me hurts. I had to push myself to get  out of bed this morning. My body tried to refuse. These are the times I feel most frustrated because I don’t even know what I did to cause so much pain. Throbbing, achy, uncontrollable pain. From my toes, knees, and hips up to my back, elbows, and neck all of it hurts. I tell myself to breath, to pace myself, that it’s all going to resolve. I force my mind to stay positive not allowing myself to feel too depressed.

After being misdiagnosed I was finally told I was dealing with Joint Hypermobility Syndrome with fibromyalgia, and all the symptoms that come along with them. I am still being monitored for Lupus with continued follow ups. When I first heard the Doctor say hypermobility I was completely thrown off. I had never even heard of it. My interpretation was I was basically too flexible and it caused my chronic pain. It, of course, is more complex than that. I am still trying to wrap my head around it and figure out what the heck my body is doing.

I won’t pretend to be an expert. I know there is Joint Hypermobility Syndrome (JHS) and Ehlers Danlos Syndrome (EDs) type III aka hypermobility type. The difference between JHS and EDS still seems to elude me.  Sometimes I hear they are the same thing, other times JHS is when you’re the only one in your family with hypermobility issues  with pain and EDS is when it is hereditary.  I, honestly, couldn’t give you a clear answer at this point. What I can tell you is I have it. Even though when I was first told I thought my Doctor had it all wrong, it totally makes sense now.

I realize I’ve had hypermobility since I was a child. I dealt with very mild issues. I can remember always being super flexible, I never had to stretch, I easily bent this way or that way. The one big issue I always had was loose ankles. They’d always hurt after running or dancing. I rolled them constantly. I just thought I had weak ones. As I got older there were other clues like severe TMJ but in my mind all my issues were separate.

Everything began to change greatly when I became pregnant with my third child. Then, six months after giving birth I began to notice I was having anxiety, fatigue, and pain. I thought it was all due to my hormones and possibly breastfeeding. I kept telling myself to get it together and really believed it was all in my head.

The scariest thing is when you feel like you lost total control and have no idea how to get it back. I stopped breastfeeding after eighteen months. I thought that was my issue. A busy home, \breastfeeding, not enough sleep, not enough “me” time, something was causing issues but I knew I could handle it. I just needed to make adjustments, right? Imagine my fear when things only got worse. I became panicked.

After a little over a year and a half I FINALLY realized this is beyond the scope I can handle on my own. In my mind it would be easy. I’d need to do this or that and BOOM I’d be my normal spunky self. That’s not the BOOM I got. Instead I had a series of blood test, several different doctors, and many months go by, all while my health deteriorated to finally get diagnosed but still monitored for possible other issues.

Deep breaths. This has been a hugs process and crazy overwhelming. I did learn why all my symptoms began to hit me so intensely, I actually never even knew that this was possible. I always have had these issues as I said there’s been little hints throughout my life. One of my Doctors explained sometimes huge/ traumatic life events can trigger disorders/ diseases to , in a sense, “wake up”. My big life event was the pregnancy and birth of my third baby. I have always had these imbalances but they were asleep.

There’s a lot that still confuses me. Even more I am trying to understand. It’s like all my small issues became amplified to the max with me still trying to figure out how to balance it all. Most days I am positive. I am able to be happy, I woke up to see another day with my family. I have weaknesses, feeling useless and needy is one of them. I am taking everyday with a grateful heart and trying to handle all this with grace.

This is my experience with chronic illness. There’s no end to the pain, just management, there aren’t any clear answers, just hope. I am ok. I just have my days where I wonder if there is more I can do. Is there something I’m not understanding?  I will continue on my path with the perseverance that one day I will know what this all is and I will live. I will live LOUD!

 

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

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

Announcement! Sometimes you just have to go for it!!

Announcement! Sometimes you just have to go for it!!

Hello! I recently decided to create a blogging challenge for myself. I will be starting off with 7 days, then take a small break, and hop back into it with 7 more days.  My plan is to write more about me, who I am, my values, what I aim to improve on, etc. I figure you guys will get to know me better but also hope it opens the door for others to process who they are/ want to be. 

A fair warning, I will not be editing heavily, more like write and go! I want to be authentic and not overthink everything too much (my Kryptonite). 

My first post will be up tomorrow. I’m excited to try something totally new.

If any other bloggers want to join in please do! Make sure to share with me 🙂 

Cheers to new challenages!!! 

#crazywonderful

For Anyone Who Experiences Anxiety & Feels Alone

For Anyone Who Experiences Anxiety & Feels Alone

The craving for a free mind. One without worry or hesitation. A mind that isn’t scared of what if’s or fears the never gonna happen. One that has the courage to step up, to be strong regardless, to know it’ll all be okay. O, the craving for a simplified thought process, a calm, the ability to relax. Close your eyes, take deep breaths, and believe this is all possible.

Anyone who experiences anxiety knows the debilitating effects it can have. The obsession to be in control and the tension of wondering when it will show up again. You push those you love the most away hoping you don’t hurt them, because every single time no matter how hard you try you do. You fight, you say things to release the craze you feel inside, you do whatever you can to rid yourself of the desperate uncontrolled emotions.

I’d like to tell you it gets easier, that it’s a phase and you’ll outgrow it. I’d like to help by cheering you on when you get through an anxiety attack, even though we both know another one can quite possibly be around the corner. The truth is I can’t tell you those things, I can’t guarantee any type of healing. I can, however, tell you it gets better… IF you take the steps for yourself. You have to understand this is not your fault and there are ways to cope.

I will be the first to say for a long time I was in denial about my issues. I thought there was no possible way I had anxiety. I thrived in a position of mental strength and held myself accountable to that. I refused to ever give up or be defeated. I believed I could accomplish anything as long as I worked hard, believed, and never gave up. It was a shocker when I lacked any type of comprehension on how to defeat this invisible monster. This beast that controlled me and created chaos in my life.

I thought I was on the verge of losing my mind. Why is it so hard for me to get over stuff? Why can’t I catch my breath? Why is everyone bothering me so intensely? Why didn’t this or that happen? What if this or that happens? Whhhyyy??? WHHAATT?? And so on…

Does this sound familiar at all?? Can you not gain composure? It’s okay, you’re not alone. For me, I felt an immense amount of shame and embarrassment. How can someone who prided themselves on mental toughness have anxiety?! In that question lays the answer: anxiety does not discriminate. Anyone can have it. Even those you believe are the strongest or have the most perfect life. It doesn’t care who you are, anxiety is not something to be ashamed of.

It took me a long time to realize that, even longer to admit I needed help, and probably way too long to open up about the difficulty of my anxiety. Everyone has different experiences, things that trigger them, how they started having it, etc. For some, life events caused them to start experiencing it, others it can be due to disease or illness. We are all made differently and it’s okay if your story is unique. What is important is to recognize you may need help and seek it.

I almost lost everything. Not because anyone wanted to leave me but because I tried to push everyone away, including my kids. It breaks my entire being to think how blind I was because of this. I caused so much pain to myself and hid. I had to admit to myself and my family I needed help. That honestly was the hardest part. To admit it… To know I couldn’t take care of this on my own. Miss Independent needed help.. You know what I learned?? So freakin’ what!?!  I need help, I have anxiety, I got help, and now I’m learning to be happier. Are there hard days, yes! But there’s a lot less of them than before.

This post is for anyone and everyone who has anxiety, has a loved one with anxiety, or isn’t sure if they have it. Nothing is ever wrong with seeking help or talking to someone you trust. Our imperfections make us beautiful. Don’t deny yourself a happy life, take the steps necessary to help yourself and the ones you love. KEEP GOING!

 

 

 

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

To My Husband, I Know This Isn’t Easy

To My Husband, I Know This Isn’t Easy

I’m not surprised, I know it’s hard to deal with this. This beast. It’s taken over our lives. There are ups and downs, small wins with lots of trying to comprehend what is going on with my body. It would be hard on anyone, but he has been my rock. Everyone has their breaking point, where it all just seems to be overwhelming.  I’ve had to lean on people more than I ever have my entire adult life. But he, he has been incredible. As soon as he realized the depth of my pain and discomfort he has been my shield. He has been my warmth, he has been my everything. 

We’ve always had an amazing relationship. From the moment we met sparks flew. I was in denial for a good while but he is surely the one person I need most in this world. He has been my anchor, my best friend, my entire being.

I often have a waves of guilt, feeling like this isn’t what he signed up for. I get lost in my own thoughts a lot of time, thinking this isn’t how it was meant to be. For him, for me. I place a huge amount of blame on myself. Maybe if I was stronger, or if I could figure this out on my own- then I wouldn’t stress him. I feel like such a burden although he reassures me I am not, I know this is all consuming.

I saw our love story so different. I thought I’d be able to love him vigorously without any limitations. I am not who I was. I feel weak, not just physically but for the first time I feel it mentally as well. All of me has been attacked.

All I need is for him to know I love him, that I appreciate all he does, and I know this isn’t easy. I feel it in my bones, in my mind…in my heart. The comfort of unconditional love he has provided me has been more than I could of ever hoped for. The love of my life is truly my rock. He is protective and caring, he is warm and loving, I am the luckiest woman in the world. I can only hope he knows I feel the extent of his love.

You’re always told marriage will have its obstacles, your told to always put each other first and love without conditions. We honestly never expected this and even with a curve ball thrown I have seen a side of him that has made me fall deeper in love, I didn’t even know that was possible… to love him more. I loved him before I even knew what love was, he’s shown me beauty and has challenged me in every way I can think of…in the best ways. 

I just want to say thank you. I am so honored you choose me. With my flaws you still love me, with my illness you still love ME, with everything you still love me. I don’t know what I did to deserve such a great love but I will forever hold it tight.

I love you

 

 

 

 

 

 

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