It’s been awhile since I dropped in here. I suppose that’s how life is these days. We get busy and forget about little blogs like this. We probably spend more time tweeting and updating Facebook that we forget about what life was like before the micro-updating.
Since the last update, I’ve participated in three MS Walks. They mean everything to me and I was happy to be a part of it. Yes, it was warm but I was prepared with ice packs and water bottles. If it is one thing that MS does not do well with–it’s heat! And let’s be honest, the desert in April is anything but cool.
I can’t say that the last four years have been perfect. I’ve had my ups and downs. I still manage to keep a bright outlook about things. Awhile ago, I admitted that I was depressed (that was a huge thing to admit for me). I also was able to talk to others about something they don’t tell you when you are diagnosed. Anxiety. I know, you’re thinking, well, that’s something everyone has at some point. I guess it is like that these days. Personally, I haven’t had a good night’s sleep since November 8, 2016. As I’m sure others feel the same way. I won’t get political on you.
But it isn’t all bad. I met someone and yes, found out it is possible to find love when you have MS. This was something I struggled with when I was first diagnosed. I remember crying in the neurologist’s office and asking who would want a girl with an expiration date. The truth is, someone that is strong, loving, and kind. He’s one of the good ones. I’m incredibly lucky to have met him.
I make promises all the time that I will not forget to update. However, life does happen. Maybe I should say I am looking forward to updating soon…
Summer is here. I know what you’re thinking – of course it is! The weather in the desert has been interesting because it hasn’t really hit the 100+ temperatures that we would see normally at this time…well, it seems that June is politely moving out of the way for July to come roaring in like a lion.
Things have slowed down here, I’m currently in edits for my latest story, All of the Lights. It’s still in the same footballer series that I’ve been writing for the last year. I find that the genre change has helped quite a bit. I see that people are gravitating to that style of writing (I know we’re all in a vampire coma and everyone is saying “no more!”). The vampire stories will come back one day but for now I’m having fun with the series that I’m working on. It’s been nice to see the differences.
I like to say that there really isn’t anything going on here but that’s not the entire truth – so much is happening (I’ve started submitting content instead of waiting for prompts or claiming story ideas). I posted over on Yahoo Voices my Multiple Sclerosis experience. It was good to share my story with others on a larger network because it is still something that most people do not know about. I really enjoy sharing my story and have met quite a few people along the way that have thanked me.
And before I leave you…today is my sister’s birthday. Michelle is very important to me and I always looked up to her when I was growing up. Even when she did things that did not make us happy…I loved her unconditionally. I haven’t seen her in awhile and was sad that I did not see her at Christmas when I was in Texas. Hopefully, we can meet up later this summer. My sister and I have tons of inside jokes. She can bring up a moment that happened when I was five and the memory is still fresh…I just love her. Happy Birthday, Michelle! Love, Chicky.
I like to think of the good weeks as just that…gifts. I spent most of last year walking through a fog, unsure really what was going on with me. My vision was limited (bright days still cause problems – summer is proving to be a challenge) and I was blocked with depression.
But, I knew that the only person that could change these things was me. I still have moments where I catch myself thinking about days past. I do remind myself that this could have been with me a lot longer and the diagnosis was the reality check. That headache, blurred vision or clumsiness – it was my body giving me a warning. Less time in the Cinderella office and more time above ground should have been something that I looked into but the could have’s would not change anything.
So, where am I now? Well, I’m still hear writing for as long as I can. Do I have a fear that there is a limited time to share the stories I still want to share? Sure, but then again I’m aware of all the things out there and programs that exist to help me continue on. Going to Braille showed me that my love for writing didn’t need to end. I still have a voice but I communicate it a different way now. My third book, Cured, was done with really one eye working and the other still recovering from Optic Neuritis.
I will say that I do feel as if sometimes people look at me like “she doesn’t look ill, she looks like the picture of health.” Maybe I do look healthy but you haven’t been around at 3am. I’ve learned to live with my MS…I’m fourteen months into this and I’ve already shown it that it will not defeat me. I don’t see it as the elephant in the room but a waiting tiger and I’m the one taming it.
I have a new neurologist…but I won’t see him until June 26th! Hooray! Progress! Not really…but I don’t care. I finally have a new neurologist…let’s dance!
Also, my love/crush for Nikolaj Coster-Waldau is out of control. Sorry…not really. I’m sure it will cool for like a hot minute when my favorite show returns (yes, I will still watch True Blood but mostly for Alexander Skarsgard)…see? I’m obviously meant for some super tall Viking or like just a normal guy from some middle of the nation place like Iowa…
In the meantime, I’m still not taking any modifying medication for my MS…I still feel tired about 77% of the time and the headaches never really go away. Tonight is the last meeting for the support group since everyone is leaving for the summer. The desert isn’t really the place for those that are heat sensitive…oh look, I’m here another summer *sigh* I know…dumb move to sign a year lease but I’m thinking if it gets bad enough – I will just head north and hope a kind soul allows me to visit for a month…or three 🙂
it was fun. I never do anything out of the ordinary and this was one of those nights. we were supposed to just go for coffee but then! we got to talking and talking led to more talking. finally, we took off and he wanted to show off the place he is a co-owner of. it’s like fancy golf cars for super wealthy people – he was talking about some country singer that had ordered a custom one for hunting. I just nodded and said that I didn’t even know it was something people were interested in.
we ended up catching up and then I looked at the time…it was nearly 2am! where did the time go? I came home but not before giving him a hug. it sounds dumb to keep saying that he really hasn’t changed all that much and he’s still the guy I knew in high school.
this whole week has been strange but I feel like something in the universe finally aligned because I had to get closure for one ex to be able to make room for a possible new guy?? I just know that I like spending time with him.
he doesn’t know about my MS. it isn’t something that I’m going to shout from the rooftops because I don’t want him running away just yet. I just found him and we’re just getting to know each other. I’ll share it later…when the time is right.
update:Â so, he did actually find out about my MS through this very here blog and well, I’m not exactly super stealth about it. I mean, it isn’t some huge secret and everyone really knows about it. He’s cool with it and I’m cool with the fact he isn’t hitting the road anytime soon. I like that we have these long talks about nothing and everything. And I really missed talking to someone that wasn’t a chihuahua or my laptop or just the empty space in my house. good times.
Quite a bit has gone on around here. I’ve been getting out of the house more and meeting new people. I’ve finished a book (that seems to be stuck in limbo mostly because of my fear  of the unknown).
I’ve been toying with the idea of writing about this last year. On March 24th, I had my first exacerbation and really this week has been a lot of reflection. Where was I going before I was diagnosed with Multiple Sclerosis? Have I changed for the better or am I still the same? What do I want to do with my new responsibility?
I don’t have the answers but I will say that it has been a learning experience. I’ve cried a lot, made new friends, and visited some of the darkest places within my soul – but I rose out of those dark days. I knew that I was a stronger person than that because no matter what I’ve said in the past – I’m not a quiet soul. That just isn’t who I am.
So yes, the idea to write down what this last year has been like is very possible. I’m well aware there are people out there that have shared my struggle and overcome challenges – I just want to be a beacon for those still navigating the dark waters. I feel that even after everything – I will overcome this because my battle has just begun and I owe it to the others that were diagnosed that have been hit harder than myself.
I know…it’s been quiet here for a bit but the wheels are slowly turning and I’ve been working on a new book and it is finally complete! I’m almost ready to pop open that bottle of Veuve but that will have to wait just a few more weeks. The design process is coming along and let’s just say that it is almost ready to be shared with everyone.
But, that isn’t the point of this post. I was nominated for a Liebster Award by the great James (who I keep promising to visit when I’m in Scotland and will – as long as we take in a Rangers game at Ibrox and then go for a pint and a bit of dancing haha). It’s really rare that I find someone on Twitter that I can correspond with that is both smart and funny…did I mention he can wear a suit well?
So, what is a Liebster Award? Well, I think I found a post that gives the history and let’s just say I am happy he has sent one my way. Thank you, James! And now onto the questions…
What is your most embarrassing childhood experience? I had plenty of these but the one that stands out is the time I went with my dad to the dock to launch his boat, Mi Maria. I was around age 8 and loved to wear skirts. It was summer but I was having so much fun playing on the dock that after the boat launched – I convinced my dad to let me stay behind. My sister was with me so my dad took off to take a spin around the bayfront. I saw a group of little boys that I thought were really cool so I started swinging on this rope on the dock (no, I did not fall in!) but I did bend over and when I flew around – well my skirt went over my head…and yes, everyone got a good view of my bloomers with smiley faces on them. I’m sure my dad would have gotten a speeding ticket if they gave them – and my sister? She was flirting with a boy she knew from high school that was out for a trip on his sail boat. If you could have dinner with a famous person who is now dead, who would it be? Oh, this is one I’ve thought about many times and I’d have to say that my choice would be Donna Reed. I loved her show when I was little and it was a sad day in our household when my parents explained that she had passed away and the shows were reruns. I always admired her style and grace. I would just love to spend a dinner with her. What is your favourite YouTube video at the moment? It would have to be my cousin, Rudy’s video for his song, Since you’ve been mine. I love it and it’s just smartly shot. I think people will enjoy it.
What is your favourite book? Clive Barker’s Thief of Always. It’s about a boy named Harvey that is bored with life and uninterested with school. One day he’s invited to a place called Holiday House and so he goes through a boxwood. From there on, it’s just a magical story of people and things he encounters. It could be considered a young adult book before the genre even had a name. Fantastic read and probably the most accessible book from Clive since well, he’s mostly known for his Hellraiser series.
If you had to eat the same meal for the rest of your life, what would it be? This one is a toss up…you see, I really love a caprese salad…the mix of tomato and mozzarella with basil…and just when you think it couldn’t get any better – they add olive oil and a vinegarette – so yummy! But of course, I love cake…red velvet to be specific. So, if you ever want me to fall completely in love – a caprese salad and cake. Key to my heart!
And now for the fun part of this wonderful award…I get to nominate someone else to join in on the fun. So, I’ve chosen Vanessa, who I met through another wonderful friend and just feel like she is an amazing soul. I feel like we have so many similar interests and qualities – it’s really cool.
The image below represents a fence that circles your house. Each fence has an invisible a gate that is voice activated and only opens to the sound of
your voice. As you explore each circle, think about whom you would place in the circle and write their name(s) in that circle.
Inside the fence closest to my house would be my parents and siblings. In the following fence would be close friends and family members. We aren’t a large family and generally we don’t hold back from sharing what goes on in our lives. I know that when I was first diagnosed – I told everyone because I had a concern for my cousins that were in my same age group. I worried about them. In fact, I was more concerned for them than I was myself.
Since I have never been one to hold back – I don’t need very many fences. I learned a long time ago that it was fine to put up a wall but you had to be willing to break it down and especially now. I spent so long internalizing what I was dealing with that I learned quickly that if I wanted any help and/or to connect – I was going to have to break all those barriers.
I will say that I do share a lot with my mom because and I know it is cheesy to say but she really is my best friend. We have a pretty good relationship even if we have our moments. But for as long as I have been alive – I don’t think I have ever been a day where I don’t talk to her. It used to drive my roommates and later my ex insane. I used to say “it’s not my fault my mom and I get along!” I’ve always said that I would much rather have that than not have anything at all.
Yes…you guessed it…I am probably a mama’s girl – is that even possible? haha
daniellellanes 