So, wow. Things look a little different around here, don’t they?

I felt like the blog needed a little love. The thing is, when I started writing this blog and sharing it publicly there were like 10 people reading it and most of them were related to me in some way. I learned how to put posts up for the world to see by watching a few YouTube videos that walked me through how to set up hosting, how to use WordPress and stuff like that. When it came to choosing a look for the site, I chose something idiot proof because I was the idiot who was going to have to figure out how to keep it going once I finally got things started. That was almost four years ago now. Now, there are a few more than my original ten readers that come around to see what I’ve got to say.

Damn. That’s hard to believe but I’ve been oversharing for the world to see for almost four years now because that’s how long I’ve been living in this nightmare dreamscape that has taken over my life utterly, completely and totally from the day of my diagnosis (December 1 2015 if anyone is counting) and if I’m honest, a few years before that. I finally knew why I felt so messed up all of the time. I thought I was just getting old. Oh, the irony! I was actually just getting old but I also was getting old with a brand-new chronic, progressive disease taking up residence in my central nervous system and straight up wreaking fucking havoc. Four years ago, I got the call that this mess had a name and its name was multiple sclerosis.

I’ve been working in advertising for a very, very long time. More recently, I’ve gotten myself all into digital advertising and communication because well, the world changes and I changed with it (change or die, right?). During all of this time, I’ve made some amazing creative friends who I knew would be willing to help me make this little corner of the internet that I call my own something that looked a little less overtly pathetic but who had time to think about designing pretty blogs when one’s life was crumbling around one? Right. No one. Not me, at least. Not until I finally just got sick of looking at my lame ass WordPress template site every time I posted my latest trials and travails. I write a lot. I look at what I write a lot. I was bored with my own self. So, I finally roped some of my creative pals into helping a sister out.

My friend David got the job of creating a new logo for my blog. That was no easy task! I’m kind of a pain in the ass as a client. It’s been said in the advertising business that ad people make the worst clients and I’m sure David could attest to the truth in that statement. My logo had to be reflective of the battle I am waging in my mind between the bright and the dark! My logo had to represent the conflict inherent in this new life I am living against my will! My new logo had to be as cool as I used to be, look as interesting as I used to be – but acknowledge the reality of my current situation! Seriously? I needed to chill out with all of that BS and let David do his job and that’s when magic happened. My logo had to be about one thing and one thing only. It had to be about me. In all of my swirly, messy colorful chaotic reality. Well, and then there’s that hair that just makes kind of an awesome fucking profile that either reminds you of a cockatiel, bedhead or me after hair day. I love my new logo. I love it a lot. I love it like I love my damn hair and you know I love that a lot.

David also had the job of taking photos of me and my life (such as it is now) to be used on this site. Can you even imagine a more hideous job? It is a well-known fact that the only pictures I ever like of me are the ones I take of myself on a good hair day. I literally hate pictures of myself. I think it’s because in my head I’m so much cooler, prettier, edgier and above all else thinner, than I actually am. Who needs to be reminded what they really look like? NOT ME.  But somehow over the course of a few silly afternoons, David managed to get a few shots that didn’t make me feel suicidal. Just a few though. Ok. Maybe one or two? Whatever. It was a good reason to hang out with one of my most favorite people in the world for a few afternoons and that made the torture worth it.

My niece’s boyfriend got the job of turning my vision for this site into an actual new WordPress site that looks a thousand times better than that silly old thing I created myself. A few back and forth chats led to the newly upgraded look for BBAD. Jonathan had the right combination of creativity and technical know-how to bring this whole thing to life. And yes, I did pull that age-old client thing that clients ALWAYS do that creative people loathe when I asked him nicely via text message if we could maybe make the logo a tiny bit bigger? Yep. I did that. I need to turn my ad agency credentials in as soon as this holiday week is over. It’s required.

The thing that was really hard about this site project that I didn’t quite realize at first was how hard it would be for me to go back to the beginning and read what I’d written over the last four years. I had to set up some images, do some categorization etc. that meant I literally had to go back to the beginning. Ouch. Good gravy there was a lot of hope in these words back then! I was so sure, so certain, so completely convinced that I’d be getting a handle on this whole having a disease thing any time now and then things would begin moving along in a slightly different way but they’d be moving along just the same.

Or not.

Things have really just continued to fall apart but in the last 12 months, that process has accelerated so much that it has literally left my head spinning.

I tried a lot of things. I failed a lot of things. I tried the power of positive thinking and watched the universe laugh in my face. I refused to even consider that this was actually going to be my life now. I was so very stubborn. I resisted a lot of things that probably would have helped me had I given in much sooner (yes, my mother was right about the stairlifts…life changing). I demonstrated levels of magical thinking that are truly something to see. I’m still doing it. I’m still refusing to believe that this can be what my life is like from now on. I’m still refusing to accept that my ever-more-complicated symptom exacerbations can really be forever. I don’t know if I can be any other way! I don’t think I know how.

Which brings me to the latest potential move that promises to potentially improve my life, the dreaded baclofen pump. We set the date for Tuesday, December 10 for the test dose. This involves arriving at the hospital at 6AM for a sweet lumbar puncture where the baclofen will be injected directly into my spine to see how my body reacts to the intrathecal thing as opposed to the oral thing that has been letting me down so often lately. Once I’ve gotten the test dose I will be at the hospital for most of the day going through various physical therapy moves to see how my body reacts to the intrathecal baclofen. If I pass the test I will be deemed a good candidate for the pump and the next step after that is to schedule surgery and a two-week hospital stay.

Wait, what?!

Yes. Apparently, the surgery to implant the pump in my abdomen and connect that to my spinal column is kind of a big deal. Why I ever thought this would be a simple procedure is beyond me! The surgery and recovery are complex followed by a week to ten days of in-patient rehabilitation. Sweet Jesus. Totally not what I had in my mind at all. I thought a few days of recovery maybe? Part of me was thinking this was as simple as something like an insulin pump. I guess the whole connecting to the spine thing makes this a more complex process because of course it is! OF COURSE IT IS. So now I’m torn between wanting to pass the test and wanting to NOT pass the test because two weeks in the clink sounds like living hell to me. But so does the thought of the rest of my life trying to prevent my legs from turning to stone and/or spasming uncontrollably using medication that doesn’t really work. So, there’s that.

Once we figure out what the deal is with the baclofen pump, I will then reschedule my delayed Round 2 of Lemtrada. The Great Scott is still firmly in the camp of me finishing the full course of Lemtrada and that means completing Round 2. We’ll see how I feel once this whole baclofen pump hijinks are over.

But let’s end this first post of my newly redesigned site with some things that I’m truly thankful for. I mean, it is Thanksgiving Day in America and it’s kind of what we’re supposed to do even if it makes for the clunkiest transition in blog writing history.

In spite of all of the things that have gone straight up sideways in the last four years, I’ve still got a really long list of things and people that make my life a charmed one in spite of everything MS related. Let’s start with the big ones…my family who have been with me every step of the way over the last four insane years. They drop everything to help me. They pick up and do the things I cannot. They convince me to do things that will help me in ways I didn’t even realize. It was my mom who has been trying to talk me into those stairlifts for months and months. Getting those crazy expensive in-home amusement park rides installed has done something bigger than making it easier to get up and down steps in my house. Those contraptions have given me back my love for my home. It doesn’t feel like it’s working against me so much anymore. I can love my house again. I am also so grateful to have some tiny bit of independence back! I did four loads of laundry the day my downstairs lift was installed. I did the laundry and put it all away in one day, no assistance required. That is more important than any other single thing that happened in this last year. No contest.

I’m grateful for my friends, the ones I can see in person and the ones who live in my pocket in my phone and on my computer. I’ve never before needed friends like I’ve needed friends in the last year. My in-person friends come through in so many ways it is hard to list them but the gift of their time to either listen to my tale of woe or to help me get out of my own head by spending time with me not talking about my tale of woe – those things are what keep me going. And to my friends who live in my phone or on my computer…You guys have become the lifeline I never knew I needed more times than I can count. You’ve been there to let me sob or to let me rant via DM, IM and iMessage. There’s a lot to complain about when it comes to the internet but when you have a chronic illness the community you build online can literally save you and it has saved me more than once in the last year.

But let’s not forget those other internet friends, you know who you are, but they are the ones who love me for all of my ridiculous over-the-top habits, the bougie skincare addiction that took the place of my love of designer shoes and bags when I stopped caring about dressing swanky and started caring about how to keep my face looking its best especially when I have no time or energy for makeup. Those friends from around the actual globe who are also there for me even when they don’t really know I need them to make me laugh (mostly at myself) and to sometimes show up in my actual living room! How awesome was that?!

I’m grateful for a job that I still find a way to love even when it looks nothing like it used to look (much like me). I need to use my brain and use it often or I get really uncomfortable. I am beyond fortunate to work for a company that supports my ability to be useful even if from a distance.

I’m grateful for my home that I can be happy in once more. I’m grateful that The Great Scott is still in my corner and wouldn’t let me quit him. I’m grateful that I have insurance that will let me spend a day getting a damn spinal tap and finding out if I qualify for the next great white hope or not. I’m grateful for so many things it’s almost impossible to list them all.

I’m grateful for you, BBADdies, too. Without you, I’d be a voice in the void, shouting as loud as I can about the mess I’m in without anyone to listen. You also give me hope. You share your experiences and you offer your support. You make me laugh and you message me your own stories that give me hope. You give me the reason to keep coming back to my little corner of the Internet to talk it out, shout it out, cry it out but in every case getting it out at all is the thing that helps me most. Thank you for not judging me. Thank you for coming on this ride with me. I’m so glad you’re here.

P.S. If you have thoughts about the new site design, drop me a comment. I’d love to hear what you think.