MS, love, and my life

me I went to the acupuncturist's today and I had a funny realization. Even alternative doctors ask the question:  "On a scale of 1-10, what would you say your current level of pain is?"  I'm sorry, what was that? Many things run through my mind when I'm asked this question. I find myself wanting to seem tougher than most. In other words, I want you to like me. So this might have me low-balling my actual pain. But I also want to get the best care I possibly can, and I wonder, will acting tough prevent this from happening? And then I start wondering how your 1-10 could possibly feel anything like my 1-10. I mean for all I know, you could be an ultra runner in your down time, pain might feel very different to you than to it does to me. Also, how does one truly quantify pain ? It is at times elusive even to me , the patient. MS is still new to me. There are mornings when I wake up and my body hurts. I feel ancient. My neck and shou...

my little girl ~ halloween 2007 I took this photo of my 7 yr old baby girl just before she left the house for trick-or-treating with her dad. She looked AMAZING. We had stuffed a ball of black mohair yarn underneath her teased hair. I had drawn tattoos up and down her arms. Her eyeliner was exaggerated and spot-on. She was SO excited! She loved Amy Winehouse's music. Even my little son (then only 2 1/2 and only speaking sign language at the time), knew how and exactly WHEN to sign, 'No, No, No' from Winehouse's Rehab song.  We didn't even THINK about her receiving any negative back-lash for her costume. Amy Winehouse was so frickin talented that I suppose we didn't question her struggle with addiction. Why should we? What did that have to do with her incredible voice, beautiful songs, and unique look?  But when they came home that night, my little girl was confused, upset, and a little embarrassed. It turned out that a woman had refused to give ...

tiny me ~ Germany in the early '70's Until I got Multiple Sclerosis, I didn't much care for self-care. It sounded selfish and a bit self-involved. I mean, who has time to nap in the middle of the day? I could ( should ) be doing something far more productive. Or at least this is how I felt before. Nowadays, if I want to have sustainable energy, I have to practice self-care. That said, it's still not easy. Recently I had an idea. What if I made self-care interesting and exciting? Maybe this could help with my reluctance. The first and most important thing I had to do, however, was change some of my thinking. That's why there is this photo of tiny me. I try to imagine, when contemplating spending time on self-care, that I'm taking care of 'tiny me'. If I look at an old photo of myself and try really hard to pretend that I'm taking care of HER, then it doesn't feel so hard. In fact, it feels kind and loving. I would make sure SHE ha...

a piece I made back in 2015 How's this for a title? I know, a bit of a downer. As luck would have it, however, being an addict (in recovery) has actually helped me walk through my ms diagnosis with a little humor and grace. Wait, what? It's true. I try to imagine how I would've handled the news of my life interrupted were I still drinking, and it's not pretty. I'm guessing these would've been my initial reactions: denial - This can't be happening to ME! I don't deserve this! Everyone, including my new team of specialists, must all be wrong! I'm gonna FIGHT this. I'd be thinking this while drinking my wine. anger - a lot like denial, only more pissed off. More wine, because when better to drink? isolation - fine, if this is indeed my new condition, then I am going to choose to pull away from everyone and everything and hide out. I am too scared to talk to anyone about how I feel, so to 'protect' myself, I will have to s...

stock image of the Kennedy's When I was little, I thought my family was perfect. That was the feedback we always got, anyhow.  "They're so well behaved!"  "They are so polite!" "They are all amazingly beautiful!"  Actually, I don't know if anyone ever called us beautiful, but I sure thought we were. Especially my mom. Not only could her smile win anyone, and I mean anyone over, her sense of style was out of this world. It's funny, because even though she was my mom, she always felt a little foreign or exotic to me, as if she were from a different land or time. She just had this way about her. I'm guessing it helped that she spoke slowly and had an unusual speech pattern. It was almost as if she was as unsure of what she was going to say as you were. As the words slowly left her mouth, she'd sometimes smile. It seemed she didn't even realize the story would end this well, and it made her happy. I loved an...

shadows of the eclipse on the sidewalk ~ August, 2017 "I'm sorry, the number you have reached is no longer in service...exactly. I mean, it is, but not with any real reliability. You are more than welcome to leave a message, but chances are good she won't respond within the next few days (or weeks), unless you've known her for a very long time. If you are family, however, she'll get right back to you. But if she's never met you, and you work for any company or agency with a long name, she might hit '9' to save your message, but she will promptly forget about you until your message is ready to be deleted by her phone company. If this is the case, she will listen once more to your message, and if it's early enough in the day, she might try you back. But again, I can't promise you anything." Here's the thing, I don't always know right away if it's an important message or not. It seems something happened to my cognition t...

me before ms, 43yrs old, 2013(ish) What would I write to my old-self, my pre-MS body, if I could have another conversation with it, knowing that this would be the very last time we would spend together?  I'm sorry, I'd say.  I'm sorry I put you down so often. I wish I hadn't said some (any) of the mean or judgy criticisms that were never anywhere near constructive. I thought it was your fault that I felt so miserable at times. I really believed that if I could only change you, to be more perfect, then I would feel less anxious and awkward. I needed someone to blame, and I can see now with painful clarity, that you felt crummy too.  Sure, we had our good days together. Like when you carried our little babies for so long, and then fed them?! That was incredible! I still don't know exactly how you pulled that one off...awe inspiring.  We barely slept, do you remember? Of course you do, you did all the work! Or all those times when we held, o...

Henry last year ~homeschooling day at the art museum To say I'm looking forward to school starting up again, is a major understatement. There, I said it. I love my little man. I feel physically sick a little every time he is picked up by his dad for the weekend. But by the end of the summer, I'm at the end of my wits. I'm guessing he feels the exact same way about me. It's not personal, we've just been together constantly for the past three months. Henry is not an outdoorsy kind of kid. He has never liked camps. I don't blame him. They can feel very uncomfortable when you're an introvert. The expectations are great. You are on someone else's schedule. You run from activity to activity with a group of others. It's a bit surreal. Not to mention the looks he still gets. Kids are curious. They haven't been conditioned (completely) not to stare yet. Oh, and there's no internet. That's huge. His iPad continues to be his lifeline...

quote found on Pinterest the other day Yesterday my guy and I decided to drive out to Astoria, while Henry was at his dad's. We are both crazy about how old and mostly low-key this town still manages to be, which is refreshing after living in Portland for so long and watching it change so radically. I decided to post my latest entry (letting go of the 'look-good') before heading out. As is to be expected, I kind of messed up how to access it. I entered (again?) the wrong link. Breathe, let go, try again. Not the biggest deal, right? Seriously though? I'm burnt out on making mistakes. Some days I have more patience with myself than others. Yesterday wasn't one of those days. So, I was trying to fix things from the road only to realize we were out of reception. And then something happened. I started to feel a little nauseous. My head began to hurt and the overcast sky became sickeningly bright. I tried wearing my sunglasses, only to remember that they wer...

little me in the first grade ~  I was already aware of the 'look good' at age seven. I can remember the photographer urging me to smile big, show my teeth! But I hated my little teeth and the gap between my two front teeth. My solution? Just hide them. Easy enough. Only, there is so much more going on when one tries to hide from the rest of the world. The thinking behind it all for me has always been this: what if I show you all my 'ugly' parts and you realize that I'm just not special enough to deserve your time, attention, or love? It's a self-protection move, of course. Being the youngest of five children, with three of my siblings being older sisters, I was keenly aware of some of their struggles around confidence and self-esteem, and hoped to learn from them, so as not to incur any unnecessary hurt. Sounds smart, right? Only, I had no idea what path I was setting myself on at the time. First it was my teeth, then the darkness of skin, my weigh...

painting by Katy Keuter ~ my sister I met my guy in October of 2016. We were hired along with countless others to help open a very big and important downtown Portland restaurant. He worked as the banquet manager in the kitchen, and I was out on the floor. He came across as a gentle giant of sorts. Mostly quiet, focused, and seemingly serious, he could also be heard laughing his warm and contagious laugh with his coworkers over some joke he himself had made. After only a short while, I realized that his team, upstairs, was where I wanted to be. I pushed as hard as I could until my managers finally agreed to let me transfer upstairs. Within a very short while, I knew I was falling for him. I am just shy of 47 at this point, so I am familiar with the difference between mild flirtation and connection. But, uncharacteristically, I forced myself to wait for him to reach out for me. Luckily, this didn't take long. A few weeks later he gave me his number written on a small piece o...

One of the greatest gifts, yes gifts , of getting MS has been learning (slowly) to LET GO. To be honest, it's a much easier thing to do when the choice is no longer yours. Imagine the freedom! That said, it hasn't always felt like freedom. At times, losing some short term memory has been difficult, embarrassing, expensive, and inconsiderate. I have mistakenly ordered two yearbooks for one child and none for the other (luckily the school secretary bailed me out on this error just before the deadline), I've missed countless therapy and doctor appointments, forgotten to follow through on things I'd promised, and mistakenly told the same stories over and over and over to my family. Many of my friends will joke that they too forget things. Maybe it's just my age, they say. But for me it's more than this. Each day is filled with phone reminders for things I've agreed to do. I set three alarms for myself; one day ahead, one hour ahead, and 10 minutes ahead. E...

                    *photo I asked my daughter to take of me, as she washed my hair~ shortly after  I got sick in March of 2017 This is my first blog, so forgive me if I am a little all over the place. I am still not the best at typing, as my right side (including my dominant hand), continue to experience intense nerve damage from my first MS episode in March of 2017. I was 47yrs old. My two children were 12 and 17 years old at the time. My intention with this blog is to share my experiences with Multiple Sclerosis (I had to respell sclerosis three times, as sometimes spelling simple words eludes me now). I hope to debunk some misconceptions about this auto-immune disease, as well as to selfishly understand more about how having MS has and continues to change and shape my world. This photo is as good as any to begin this journey. What it doesn't show, is that I was crying while Bella took the photo. Not because I was scar...