Have you ever been in a situation where you get an inkling you are the “expendable friend,” you know the person someone might want to socialize with at a certain time and place, but who will later be virtually forgotten.  Yes, I have been the expendable friend on many an occasion, but I have learned to deal with it.  I have even paid for my friends when we went places, or went out of my way to make them feel better when they were down, but I learned along the way I was truly expendable by a few people.  For instance, other friends were invited to major life events, but I was not even invited.  In retrospect this might have hurt my feelings, but when I thought about it, I just figured out I was not really all that important to this so-called friend.  No wonder I've become more of an introvert!

For years I have always been the person that went out of my way to help others.  I do not want to stop being who I am just because a few people have found me to be expendable.  Actually, I have received glowing compliments from strangers.  One man told me I was more helpful than most people, and I had to wonder about what he meant by that. When I thought about it, I realized I actually go out of my way to help others and to be friendly, and some people cannot be bothered.

I am not trying to criticize anyone, but we do live in a modern culture that places a high premium on self-indulgence and self-involvement.  In the past I used to listen to people who only talked or thought about themselves, but as of late I just cannot be bothered.  I might be glad so and so is ecstatic about this or that, but after awhile, it gets boring to hear someone prattle on about himself constantly. 

No one person is that exciting, and if a few people consider me the “expendable friend,”  I always bounce back and move on.  I realize I do not have the dazzling personality that is winning over crowds, so I prefer to have a few friends in my life who count and care.

Still feeling tired and sluggish. I'm sure this rain storm isn't helping. I did get on the elliptical for 10 minutes...taking it easy. Having a TIA always scares me. I spent most of the day on the couch with my sick daughter. I'm sure that didn't help the tired and groggy feeling.  :)

I know I have to take care of myself, and the rest felt good, but I feel like I get labelled lazy when I do that. I didn't do much around the house today and my husband didn't come out and say anything, but I could tell the "What the heck did you do today" was there. No one understands what looking normal and suffering in silence feels like. OK, that was a little dramatic, but you know what I mean. Just because you look fine doesn't mean someone is.

So we went camping for 4 days over the 4th of July, and had a lot of fun! the first night was gorgeous, followed by a day that was so windy we couldn't do anything but sit and yell to hear each other. The next days were so nice. We went boating, tubing and swimming. It was a lot of fun!

While packing to go home, I reached up into a cupboard to get a cup for my son and my left side just went gone. "Gone" is the best way to explain it. All of the sudden, I had no feeling on my left side at all, like it all just fell off. I felt like I could fall to the floor but made it to the couch, in the motor home, and sat down. I told my son to go get my husband. I was eating something, and chewing, but my mouth felt a little weird as well. By the time my husband came in it was gone. It only lasted about 20 seconds, but felt much longer. I wasn't sure if it was going to stop, or continue and get worse. Luckily, it was just that short, and resolved quickly. My husband made me do all the stroke tests...smile, stick out your tongue, hold your arms out, etc...and I passed them all. I had no pain, no headache, and nothing afterwards. We think it was a TIA.

I think maybe I didn't keep myself hydrated enough. We were out in the sun a lot, and I think maybe I didn't drink enough water or Gatorade. I need to make sure to get enough fluids while we're out in the sun!

It's been a rough Summer, I'm not even going to lie. Luckily, I've had one really good friend who has been there and has helped me out. God knows what I would do without her. She's a true blessing!

It's been a weird Summer. People that I was friends with are now suddenly gone. Just gone, or too busy for me, or I've pissed them off (somehow...not really sure). I always try to be honest with people and with situations. I guess some people can't handle the truth (not that I've been rude). Most of these people I have helped out with gifts of clothing, or helped around their house when spouses were down, or helped with household chores when they were too busy, all for free, out of the kindness of my own heart. And the best...a friend request on facebook declined. Whatever! It just seems like I am the first one people call when they need something, but when I am having a rough time, where are they? Not one call, not one "hey, how are you doing?" or "How are the kids?" Not one play date, or invite to lunch or anything.

Life with a defiant child is hard too. Every day is a battle, every request a chore. I don't know if the therapist is helping or not. $135 for 53 minutes of playing games and talking. No coping skills. It's frustrating.

We were also going to move to another town. We were thisclose to listing our house. Had they accepted our offer (full asking price contingent on selling our house) we would have. That, in itself, has been an emotional roller coaster. Of course, only one friend knew, only one friend cares. (Not a pity party, it's how this summer has felt).

I'm not trying to make this a depressing post. It's just so amazing how quickly I have been forgotten by people I have gone WAY out of my way to be there for. How quickly a person can become non existent, and how there can be no one who knows or even cares. Except my one blessing of a friend who doesn't judge, is there for me no matter what. Thank God!

My blog, my feelings...judge if you want.

I saw this on Facebook today and realized how true it is...

Don’t ever be ashamed of the scars life has left you with. A scar means the hurt is over and the wound is closed. It means you conquered the pain, learned a lesson, grew stronger, and moved forward. A scar is the tattoo of a triumph to be proud of. Don’t allow your scars to hold you hostage. Don’t allow them to make you live your life in fear. You can’t make the scars in your life disappear, but you can change the way you see them. You can start seeing your scars as a sign of strength and not pain.

Rumi once said, “The wound is the place where the Light enters you.” Nothing could be closer to the truth. Out of suffering have emerged the strongest souls; the most powerful characters in this great world are seared with scars. See your scars as a sign of “YES! I MADE IT! I survived and I have my scars to prove it! And now I have a chance to grow even stronger.”

This song reminds me of me since my Moyamoya journey...it's Unwell by Matchbox 20. Take a listen if you can.

It's hard to describe but there is definitely a "me" that fits into what I call the BMM (before Moyamoya) category and AMM (yes, after). I see pictures of myself or my family or of anything really and my brain automatically categorizes it as before or after my diagnosis and surgeries. I was definitely a happier, more confident person before. I can see it in myself every day, and I can see it in pictures and videos.

Something changed in my core, my "who I am" with that diagnosis and treatment. I lost ALL confidence in myself. I think because something I trusted so much (myself and my body) failed me, it shook me to my core. I am now anxious about even the simplest things. I take an antidepressant that helps with that as well as low serotonin production. I used to sing at weddings, sing karaoke and now I quit choir at church because of low self esteem issues that hold me back. I suffer from being inadequate, or feeling that I am inadequate, for almost everything I do. And weight loss...don't even get me started on how much weight I've gained since "BMM". Uggg, that is a struggle that I see in the mirror every day that exacerbates all my other feelings. Maybe I need to find a stroke survivors support group, or near death support group or something like that, because I think others would understand what I am going through. It's almost like some kind of PTSD, maybe a support group for that as well. I have so many things to be happy for (I know that's not correct grammer) but yet I am not a happy person, and I'm not sure why.

I know I'm not crazy, just a little unwell...

I am not a fan of thunder and especially lightning. I have always been a weather wuss! I mean, if there is a lot of thunder we'll be in the basement. Right now we're having some loud, long thunder...Uggg! I am debating unplugging everything. Ever since our house was hit by lightning 9 months ago, I am even more afraid of storms. It was such a pain to replace all that was damaged!

Anyway, yesterday was day 1 without sugar. I did pretty well. I forgot for a split second and had a few pieces of my son's dry Cinnamon Toast Crunch cereal, mindlessly popped it into my mouth and then thought "what the heck am I doing?" I didn't even realize I was doing it either. Today is my first full day of low carbs (50 or less per day). I am so desperate to get this weight off, so exercise and fewer carbs for me now.

Mother's Day is coming up this weekend and I didn't even realize it. My husband asked what I wanted to do and I have no answer. I really can't think of anything that doesn't involve food. But a good buffet should have enough low carb options to make it worth it.

Happy Mother's Day to all the Moms out there and especially to all you other "Moyamoya Mommies"!

Happy 2nd Annual World Moyamoya Day!

Today was an emotionally exhausting day. So many suffering from Moyamoya, physical and emotional symptoms, as well as those suffering from the loss of family and friends. I spent the day with many tears; happy and sad. I am so proud of so many who spread awareness and advocate for us!

I posted a lot of stuff on Facebook today. Everything I found actually. I may have gone overboard a little bit, but it would be worth it if one person learned something, or hopefully it could save a life!

We all wore our World Moyamoya Day t-shirts today. I had to bribe my son with ice cream to get him to wear it, but he did. He doesn't like the brain on it. It freaks him out. He's 7 years old, but I know he remembers our trip to San Francisco for my surgeries. I think the memory freaks him out more, and he projects it onto the shirt.

I had my 3 year check up this past summer and had all restrictions removed. My brain looks normal! (Hey, no jokes about if it ever was really "normal") I was also very excited to attend the Stanford Moyamoya patient picnic. It was so awesome to meet so many other patients in person, not just online.

Anyway, I need to get back to blogging because I miss this outlet. There is something very theraputic about writing things out and letting them go into cyber-space.

Good night, peace and happy World Moyamoya Day!