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Category: Lupus

The Emotional Part of Chronic Illness

The Emotional Part of Chronic Illness

I wasn’t going to post this week, I didn’t even want to write. This is the part we all want to hide. When we feel like nobody will get it and there’s no way to explain it accurately. I could of stayed away, just disappeared till my mind didn’t feel so frazzled and my body didn’t feel broken. Let’s be honest here though, when will that be? When will I feel whole? Where feeling like I am half myself and half zombie wasn’t the normal. I say to myself ok, you’re having a setback, but in truth there’s always some type of something to deal with. This is the part no one with chronic illness wants others to see.

I promise I am trying my best. I tell myself this is okay, that I will progress even if it’s slowly. The hardest days for me aren’t the days I deal with physical pain, it’s the ones where my mind betrays me. The times I feel lonely and sad. Dealing with constant pain is a continuous battle. We fight to love our broken bodies, to smile through the pain. We want others to see us as people and not pity us for our circumstance. The pain doesn’t go away but at least we have our brain, our thoughts, our ability to overcome it because we are mentally “strong”.

What does that even mean? I feel weaker than I ever have. I am annoyed because I am laid out most days, hoping to at least have enough energy to interact with my family, and smile or laugh. I get pissed because I feel so alone. Desperate for people to want to be here but at the same time not wanting anything to do with anyone. Feeling the guilt of putting everything on my husband and to top it off I can’t even deal with stress. I mean what kind of wife am I if I can’t even be there for his needs. I never thought I’d be this person, I am not talking about the illness’s, it’s the mental part.

I am strong, I am capable, I am independent, I am….. none of those things anymore. It’s all been stripped away from me. I have been forced to ask for help, to be vulnerable, to accept the days I can’t do anything. Does anyone ever get use to this or will this always be a battle? There’s a reason this is the side we don’t want anyone to see…we hardly understand it ourselves.

The fears, regrets, and anger that comes with all this is debilitating. I have my days,weeks, or months where I just don’t want to deal with another day of not being “strong”.  I promise myself I’ll make tomorrow better. That there’s a silver lining to any of my worse days. That I know there’s other people going through so much worse. That I WILL get through this. I have to pace myself and remember there is very much a mental aspect to chronic pain. It’s okay to have weak days, the days that hurt to think or feel love.

I realize the power is what you do with those days, how we forge on, what we choose to do next. So, yes I have been having a not so good few weeks, and yes I got caught in the turmoil, but today I choose to not hide from it anymore. There’s no shame in this. Not for any of us. I refuse to let this determine how I value who I am. I will allow myself to feel all the ways I need to so I can recover, grow, and accept my normal.



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

The Many Faces of Chronic Illness

The Many Faces of Chronic Illness

People who suffer from chronic pain often have many faces they portray. As much as we don’t want chronic illness to dictate our life, it does. From what our daily plans are to how we interact with others. There’s so many feelings that come with the chaos of never-ending pain. Sometimes I am able to hold it all together and other times there is no way to hide it. When I was thinking about this I realized there are several faces of chronic illness. I think many of us dealing with Lupus, Ehlers Danlos, Fibromyalgia and other illnesses can agree that there’s never a day that we don’t feel one of these ways.

Lupus, EDS, & Fibro  changed everything. Here are some of the faces I wear:

  • The faking it ’till I make it face
  • The WTF is this now face
  • The I’m too tired to move face
  • The everything hurts face
  • The do they really get it face
  • The I’m NOT crazy face
  • The damn! another Dr’s visit face
  • The will I ever function face
  • The I’m trying to positive although I feel like sh*t face
  • The shut up…leave me alone face
  • The will I ever wake up not in pain face
  • The I wish I could be more help face
  • The smile through the pain face
  • The I’ll do it anyway and pay for it later face
  • The I hope they can’t tell how much I’m hurting face
  • The I’m jealous you’re abled-bodied face
  • The I’d give anything to dance, run, jump, walk face
  • The I’m going to get through this face
  • The I am determined to get better face
  • The thank you for loving me at my most vulnerable face

I know this list can come off as pessimistic or negative but it is our reality. As much a we would like to focus on the good there are regular moments of despair. I get very frustrated and angry at my lack of control. Although I can reel myself back in and get to a positive place it doesn’t negate the many faces of chronic illness. The ups, downs, and in betweens cause many of us to feel crazy. Through it all we know tomorrow will be another day, and though we may be in pain, we will fight for our chance at that one good semi-pain free day.



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

Tired of Lupus & Misconceptions That come with it

Tired of Lupus & Misconceptions That come with it

The first time I ever heard of Lupus was when I was in high school. A friend was diagnosed and all I knew about it was it made her tired. If I am being completely honest I didn’t give it much thought. Whenever I saw her she seemed “normal” enough. There wasn’t anything I could see that concerned me, so like many of us I assumed it wasn’t a big deal. She was such an ambitious girl, there was so much life in her, and I thought if something was truly wrong she’d talk about it. We weren’t the best of friends but I always felt close to her. I was naive and ignorant. I didn’t even know what Lupus was or how complex the disease could be.

There are so many misconceptions with people who have Lupus. They don’t look sick, they sleep too much, maybe they should take more vitamins, what if they try this or that. What most miss is there is a whole world going on behind closed doors. The way we are dealing and trying anything to heal. I didn’t recognize that with my friend. I so wish that I did. Not that I could of done anything or she’d want me to be there, but at least she’d know I was trying, that she wasn’t alone.

People with Lupus are often misconceived as private or unsocial. What many don’t understand is it’s an isolating disease. Lupus usually does not come alone. There’s a whole list of other side effects and accompanying symptoms. Some of mine include anxiety, fibromyalgia, and IBS. The list is much much longer [but that’s not what this post is about]. It’s much easier to hide and be with yourself, instead of having to explain what is going on or why you can’t do certain things. The thought for me is “if they don’t see me they won’t know, and I can still seem normal.”

That’s another thing the word normal. That’s probably the biggest misconception, you look healthy so you must be. It is so annoying to feel like you have to constantly explain why you are hurting. That there are real consequences for certain actions. I get so overwhelmed with others assumptions it interferes with me concentrating on myself. Am I suppose to make myself look or act sicker so they can “see” Lupus?? [not gonna happen].

Going off this thought, medications don’t take it all away but they help. There’s a lot more that goes into managing Lupus. My daily decisions can effect me for weeks to come. From how long I walk to what I eat, all of it has become a conscious decision. All the way down to when I shower. There’s no room for error and even if I somehow have a “perfect” day that doesn’t guarantee I will feel well. There is no cure for Lupus. All I can do is manage it and stay positive.

POSITIVE. Do you know how many times I have been told my mind will help heal me if I am positive?  Let me just say I am no where close to a pessimist so if it all it took was to be positive, I’m positive I would be healed (like what I did there). I almost drove myself nuts thinking this was all in my mind. There came a time I had to face reality. Something was very wrong and I needed medical help. People with Lupus aren’t negative, they are lost. The havoc your body feels even when you baby it is all consuming. Even when you have a positive mindset there is more that has to be done. It’s not a cold that is going to go away, it’s a forever life issue.

I can only imagine the difficulty my friend had being diagnosed in high school. I did not start experiencing symptoms until after the birth of my third child. From what I understand the disease was dormant and major life event woke it up [child birth]. Everyone experiences Lupus differently. If there is anything all my countless Doctors have agreed on is no two cases are the same. So when people look at me crazy because their brothers-wife’s-mom-sister’s-friend has Lupus and is completely fine because this and that worked  for them, and I say it didn’t work for me, doesn’t mean anything except what helped them didn’t help me.

These examples are the very tip of misconceptions people with Lupus go through. Being diagnose in my thirties I feel like I had it a little easier than my friend. I can look back and appreciate her strength. I still don’t know how intense it was for her but that word [Lupus] holds so much significance for me now. The next time I heard someone even say it is when my primary care physician became concerned about the possibility. I had no clue how much the word I paid no attention too way back when would change my world.

My realization is, I can’t expect people to not have misconceptions to a disease I knew hardly anything about. I didn’t even learn what it really was until going through the process of being diagnosed. Most people mean well. I’ve learned to embrace their advice as concern and dismiss their ignorance as just that, not knowing better. Misconceptions will always be there but it could be worse. I have a chance to educate those who truly want to learn more and move on from those that know it all already. Lupus is not the end for me, far from it. It’s the very beginning.





***Wrote freehand with limited edits, Please be Kind***



It’s The New Year & I Have The Flu…

It’s The New Year & I Have The Flu…

Man, o man. There is nothing like going into the new year motivated and ready to attack your goals, but instead being knocked on your a** with the flu. I was actually improving with my health. My medications started to finally all work together and I was functioning. Not just the going through the motions functioning but actually moving, doing some things I wanted functioning. What is that saying? One step forward, two steps back… Naaahhh I am determined to not be in that mindset. I am sick,  my body is aching, my joints are impossible, but I am not stopping. Nope, NOT happening!

Today, I finally met one of my New Year’s goals. I made my damn bed! I know it’s silly but that is a huge goal of mine. With all my pain and possible excuses I completed a simple task (actually complex for this body). The fact I did it while dealing with the flu is even more of a celebration for me. Lupus, Ehler Danlos, and all the stuff in between don’t mix well with the flu. Somehow, my super duper powers came through and I did it (insert me flexing my arm)!  I can’t let this set me back too far. Don’t worry, I won’t set unrealistic expectations. I will stay in tune with my body.

I have actually been doing really well with my other goals. I have been getting out of the house more and I am steadily developing my business venture, Nix Essentials. Overall, I feel pretty proud of myself. I am control. WOW, that was weird to say. The past few years have been so out of control I thought I’d never feel like things were in order. With all I’ve been through I refuse to let the flu get me down. Maybe it’ll slow me down but it won’t keep me down. Let me echo what I said earlier: NOPE, not happening!

I don’t feel so desperate anymore. I have hope. There’s been a glimmer of improvement and I am running with it! A few months ago I wouldn’t believe you if you told me I would have this mindset, or be able to use my body again. What’s even more wonderful is my Doctor is still working on more improvements one step at a time. I can deal with a step at a time, as long as we are taking steps.

I am still dealing with daily pain. I think I will always have chronic pain. I will learn to deal and manage it. The beauty is I am beginning to feel like Lupus and Ehlers Danlos is not all that I am. I can do more, I can be more. Having the flu, as much as it hurts, put in perspective how far I have come. Being thrown back into this unbearable constant pain has oddly given me a boost in morale. As much as it scares me to feel intense pain again, I know I have made it out of the storm before and I can again. I never thought I’d say I am thankful for the flu, but this time (and just this time) I am.


I found the silver lining…



***Written freehand with limited edits, Please be Kind, Thank You***


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… 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 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. 


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****