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Family, Great Mary, Journaling, Lupus, My Blog's Only Rule, My Weekly Chemo Injections (Oh Joy!), The Awesome Man In My Life, The Holiday Season, Writing

Even though I have Lupus, I still NEED to be NEEDed… but I also NEED you too!

SO this is a post I have been putting off for a while. See, the way my brain works (especially since I “got sick” & was diagnosed with Lupus) I just have to flip things over & over in my brain until they gel just right before I’m ready to say anything. Sometimes it takes longer than other times. This is one of those times it’s taken me quite a while.

And not just because it’s something that required a lot of deep thinking exactly, but sometimes things like weekly chemo injections, the death of my Grandmother during the holiday season (whom I was as close as I am with my mother), then on top of it all one of my closest friends being diagnosed with an inoperable tumor growing into her heart & lungs & her throwing blood clots in BOTH is what finally got her diagnosed properly… you know – TOUGH things to go through.

Each of those things in and of itself is hard to deal with. You pile them all on top of the other things I deal with health wise on a daily basis & you just have OVERLOAD. There are other things that didn’t exactly make things easier by any means, but for the purpose of this blog I will stick to just the aforementioned for now. It’s plenty to deal with, I would say. And Lord knows how I ramble once I get going ;)

People talk about having writer’s block, well that would have been welcome in comparison. I mean obviously I had that too or you would have heard from me on here sooner… but it was more like BRAIN FREEZE. And I know that it’s the way the body protects us when we’ve just got TOO much on our plates, so now a few months later I’m here. And ready to start sifting through it all.

Mmmmhmmm. Yup.

Luckily I’ll have some FUN distractions coming my way this month & next. My best childhood friend is getting married & I am one of the bridesmaids. We’ve got a shower, the bachelorette weekend, and then the wedding to look forward to. If I am up to it health wise & receive my “You Have Lupus But Can Now Have Fun” card for passing GO at my Lupus specialist’s office in Atlanta next week, I may even spend the last week or so in Mississippi with Emily (the beautiful bride) and my family. Yes, I grew up in Mississippi. No, I am NOT a Bible thumping member of the GOP. Any more questions?

My friend with the tumor I was speaking of checks in for the sixth round of treatments tomorrow. HIGH dose chemo IV plus the same type chemo I’m on weekly put into her spine for good measure :( OUCH, poor baby! I had to have a few spinal tap & epidurals in my day as a patient & I absolutely HATE that part for her. Did I say OUCH? After her second round her hair started coming out in clumps all in one fell swoop. I had already let her know that I had clippers & was a trained professional (true but meant as humor – I am a cosmetologist as one of the “things I can do”)… and if/when should she need my help buzzing it all off not to hesitate to call me. When I found out the dosage she was getting I knew it would be sooner than later & went right over even though it was 9pm the night of my own chemo treatment & my shoulder had been giving me fits. Of course the first thought was, SHE NEEDS ME! I WILL BE RIGHT THERE!

I never really thought about how me going through losing my hair as a cosmetologist would end up being helpful to others. Honestly, I thought it all quite horrific, cruel & unusual & had wondered just why ANYONE ever should have to go through chemo & then lose all their hair too? Add insult to injury much? But yanno, I’d go through it all over again if it meant I’d still be able to be there for my friend in her time of need.

Going through worrying about her, checking up on her, her withdrawal/hesitance socially that is unfortunately eminent… well, it’s all just really made me stop & think about a LOT of things. The main one being how the people I thought were my closest friends acting the way they did. And there is NO right way to act when your friend gets sick, but there IS a wrong way. And I wanted to be certain I didn’t ever do any of those things to her. I wanted to be her ROCK that she could depend on, so I didn’t give up on her. And I never will, either. I will KEEP inviting her to everything until she’s up to coming again. I won’t be selfish & turn her illness into imagined problems. I will come when called upon, even if I’m not feeling great myself – as I know how much she NEEDS me. I know how much it all can hurt & how people can give up on you long before you’re “better” or can do things they want you to do or that benefit them.

Life is hard, and man do I know that you ALL know this. Regardless of if you’ve been on chemo in your life or never get diagnosed with a serious illness (as I hope you never will be) – life is just TOUGH. So my point is this…

DON’T JUDGE WHAT YOU DON’T UNDERSTAND! And I will just keep on being the best friend that I can be to those people in my life that I can do so for <3 And I am thankful for those of you who have never given up on me. Thank you <3


About HopeBetweenTheDreams

I have this crystal-clear memory of picking out my first diary when I was five years old. It was Hello Kitty and had beautiful gold edged pages that I still have in my possession thirty-one years later crazily enough. I remember how angry it made me when my older brother would pick the lock and make fun of me for the "secrets" I'd written inside. But who was I kidding anyway? Those flimsy locks couldn't keep a toddler out. So I guess you can say I developed a strong sense of importance about my written words and memories from a very young age. I continued to keep hand written journals my entire life (and will put some hilarious excerpts in here from time to time for sh*ts and giggles - as well as share some of the things I'm most proud of having written). In November of 2003 I stormed the world of LiveJournal with my first online blog and made some of the closest friends I've never had and still have honestly. I was blown away by how much someone could care about me whom had never even laid eyes upon me in person, hugged me, or been to a birthday party of mine. My friendships "in real life" honestly didn't hold a candle shockingly and I slowly began to see this. Especially when things got tough in the years ahead... I was diagnosed with Lupus (SLE) in October of 2009 and I started a new journal on Blogspot just so that I'd have a separate place for writing about what I was going through. For some reason I felt a deep-seated need to compartmentalize my health problems from the rest of my life and other thoughts and ideas. Which anyone with a chronic illness knows (or will soon enough learn) is really an impossible feat and takes way too much energy you already don't have. But honestly neither blog has been used much for years now, which in turn brought me here to you. Sporadic posts here and there just aren't cutting it. So I think I need a fresh start. A clean slate. A new crowd. I will welcome any of my old pals with open arms, but I need a new place to call my own. One with no expectations of who or what I used to be... one without thousands of entries that are my past weighing me down. For now, I'm going to try the anonymous/open blog thing on for size again and see how it goes. I've got a lot on my mind and Fakebook just doesn't seem the appropriate forum if you know what I mean. And I know that you DO know what I mean ;) So welcome to my world. Open minds only, please. It's my one and only rule! ♡♥♡♥ Oh, and please play nicely while you talk amongst yourselves. Discussion and debate are more than encouraged and are some of my favorite things as you will learn, but we can all do it in a polite and respectful way. One of the best life lessons I have learned over the years is that just because someone has different beliefs or is from a different walk of life than you does NOT mean you can't learn a lot from them or become great friends. If you keep your hearts and minds open I promise you that this great wide world will surprise and amaze and shock the hell out of you every single day. ♡♥♡♥


2 thoughts on “Even though I have Lupus, I still NEED to be NEEDed… but I also NEED you too!

  1. I love you beautiful girl. Keep your head up; you are so brave and so strong. I admire your courage. Keep fighting the fight for yourself and others; it’s a color that looks great on you!

    Posted by Jessica Greenstein | March 7, 2012, 10:52 am

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