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Great Mary

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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

Great Mary <3

So, yesterday would have been my amazing Grandma’s 95th birthday. 95. Can you even fathom living that long? Honestly, I can’t. I turned 34 this year and even that still doesn’t seem possible to me. She died just a few weeks ago from complications after having a stroke, so it was a tough day for pretty much everyone in my family I do believe.

I was very “stuck in my head” and mourning a good bit of yesterday, so I never got around to posting about it all. I need to address it and be thankful for all of the time that we had with her, though. So here I go.

She was an absolutely exceptional woman in every sense of the word. Smart as a whip, and very funny too. She would surprise you the things she knew how to do, also. For Christmas almost three years ago now, my husband Christopher and I flew up to spend the holidays with her. Despite the “brain tumor” scare two days before we flew out (I didn’t have one – but it was ridiculously stressful – story for another time though!). Well, we went anyway because I felt VERY strongly that this would probably and most likely be my last chance to do something like this with her.

See, I grew up in the south way too far away from my Dad’s side of the family in California and my Mom’s side of the family in the NYC/NJ area, and I had never gotten to spend Christmas with her but one time my entire life and that was down in Florida the year we got married on New Year’s Eve almost five years ago now. We ended up living as southern “transplants” the majority of my life because of my step-Dad’s job. His family was in Oregon so we never got to see them either, really.

Point being, I wanted to spend Christmas up there with my Grandma and knew time was running short. I wanted to see NYC all decorated for Christmas. I wanted to show Chris where I grew up spending my summers at my grandparents’ beach house in Mantaloking, NJ. I wanted to be with her and be there for all the fun family get-togethers first hand instead of just seeing pictures like I had my whole life. If there’s one thing I regret in this life of mine, it’s that all my family is so far away and I wish I’d had that extended family “thing”. I wish I’d been in all those pictures. I still remember getting pictures of my cousins Nina and Lesley with the wishbone all the Thanksgivings they’d all spent at the shore house. It would make me SO jealous I wasn’t there with them, even as a little girl.

I know regret is a pretty much useless emotion when you really get down to it, but fact being I do regret being so far away from BOTH of my families on opposite coasts. It seemed weird and unfair that all my friends had grandparents, cousins, aunts, uncles all in the same town or a quick car ride away. I was definitely always very in awe of it all, especially because my best friend Amanda’s grandparents lived right across the street from them! And her cousins were right down the street too! I never had that and I wish I had because I think I have the most amazing and interesting families and I have missed out on SO much.

No amount of 30 hour road trips to spend a month at the shore in the summer seemed like enough time. The older we all got, the shorter the trips would be because we had things like summer camps and then the trips even ceased completely when I went to college or I could no longer go along because I was in summer school. I’d always wanted to just BE THERE. And three years ago now I had that opportunity finally, and I am so very glad that I did. It was everything I’d hoped it to be, and many things I’d never expected all at once. But I was THERE. Right in the middle of the pictures, smiling my best smile and loving every minute of it <3

I still can’t believe that she’s gone honestly. And now because I am back on weekly chemo injections to help with my Lupus, I can’t even go to her memorial this next Monday. It truly sucks, but I just know that if I did I would end up in the hospital. My health seems to be teetering on the “unhealthy” brink… and I know this because of how I feel in comparison to other times since my diagnosis and due to the way I’ve been feeling and due to my blood work results. My chemo dosage amount was upped to almost double the weekly dose a week and a half ago now, so it’s DEFINITELY not the time to be stuck in airports and on planes with sick people everywhere at the busiest time of the year to travel. I know this logically, but it still sucks.

So yesterday I called First Presbyterian Church of Auburn. I am not a regular attendee either. Honestly I just go to the Christmas Eve candlelight service every year. I grew up going every year at First Presbyterian in Vicksburg, MS and it’s the only time and place I ever feel the PEACE ON EARTH you are supposed to feel this time of year but I honestly am usually lacking. Well, I explained my situation to the sweet preacher Dr. Covington and he offered to let me come sit in the chapel and light a candle and even offered to sit and talk with me and anyone else who comes with me. It was such a nice, warm feeling that I haven’t gotten in a long time from a church honestly. I am so glad to have something planned for that day instead of just sitting around feeling left out. It is a huge relief and I am so thankful for their kindness!

Truth is… we can’t afford Christmas this year, or last year, or the year before honestly. My stupid medications and doctor visit co-pays and the fact that I haven’t been well enough to work for two and a half years now royally blows. We had like $300 to spend the entire two weeks we were up in NYC/NJ three years ago, but we made it last somehow because we stayed with family. We even got to go into the city twice. We took the bus (cheap), just walked around (free), took pictures (free), got calzones from a cheap but delicious pizza joint. Don’t let anyone tell you that you can’t do NYC for cheap, because if you have to you really can. Point being, Christmas isn’t what it is to most people for us.

I really don’t understand the greed/capitalism of the season and everyone running around like chickens with their heads cut off. Mostly because I can’t participate, but also because I’ve realized it’s all a bunch of phony baloney. I’m on very strict dietary modifications, so I can’t even eat any of the snacks at holiday get-togethers either. I also don’t know who in that persons household had flu last week and if I’ll get exposed to things other healthy people can fight off that I just can’t. So it’s a very, very different scene for me than everyone else.

But I really don’t mind anymore and am not asking anyone to feel sorry for me. I’m simply stating how different life is for me than for most because of my health… and that through all this I have come to realize that the Christmas Eve candlelight service and that amazing feeling I get from it really IS the reason for the season. And I feel blessed that I get to see through all the artificiality to the core. It’s strange how life works, isn’t it?

Well, this was more than I ever planned to write… but obviously needed to vent a bit. And if I can’t do it here where can I do it? So I will wrap it up and promise to tell more stories about my trip to Grandma’s house in separate posts because I don’t ever want to forget anything about that trip.  Also, I challenge you to try to see through to the real truth this time of year too. It makes all the difference in the world when you can and do.

<3 HopeBetweenTheDreams

PS – I know that if we had kids we’d have to participate moreso than we do, but honestly our kids all have fur and all they care about is being with us!

xoxo

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