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Month: January 2018

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…

 

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***