Friday, October 24, 2008

Nice Melons

If I saw this melon man coming up at me, I think it would turn me off on fruit for the rest of my life. Well..maybe for a few minutes. I'd just take out my trusty Henckels knife and lop his head off. Mmmm...

Speaking of scary, painful slices into the head, I met with a group of women last night who have what I have--Chiari Malformation Type I. I found them through a woman named Kelly who was featured in an article in our local newspaper earlier this month. She thought she was alone in Frederick, but turns out there were 6 of us who showed up. Others didn't make it to the meet-up last night, and I'm not sure how many of them there were. We all contacted her through the reporter who wrote the article.

It was enlightening, to say the least. One girl is my daughter's age, another is only a few years older than that (and has had 7 surgeries for brain related problems including CM1). Three of the women have small children and are having trouble dealing with the demands of motherhood while feeling tired and in pain all the time. We all had the common problem of having doctors not understand the disorder or try to write off our debilitating head pain as stress or malingering. There were many tears last night but also laughter. We all agree that we don't let our condition define us. But one woman's husband had left her (and the kids) because of her condition. Another had trouble with long-term relationships because the men always get scared off for one reason or another. It's a lot to deal with.

I felt so incredibly lucky. First off, I haven't had to have brain surgery yet, as two of them have, and I have a great husband who wouldn't dream of leaving me because of this. He knows I've been by his side in tough times, and he is by mine.

The two who have had surgeries had them at TCI in Great Neck, NY, where I am waiting to get an appointment. The doctors up there are the experts in Chiari and I hope that when I see them, they will be able to help.

It's been a pretty good week, though. Not too much pressure or pain, so I am plenty grateful. Maybe it's my Halloween present? Maybe I'm going into a cycle of being relatively pain-free? Wouldn't that be nice.

For now, I have places to go and people to see, and I'm grateful that driving won't be an issue. I am not dizzy nor in pain today. I have my wits about me (don't laugh) and am raring to go. Just like this little watermelon guy. Not quite as scary--just thirsty!

Have a wonderful day - Peace - D


Moannie said...

let's just get those melons out of the way first. Scary or what! Did you do them? Ahhhh! clever but ghoulish.

I am so pleased that you are having a relatively pain free period. My, God, how we lucky few take our good health for granted. I cannot imagine how you manage to keep so cheerful,, but thankfully you do and are a lesson to all of us.
Big HUG.

Shrinky said...

OMG, these sculptures are simply awesome!

I am so glad you have discovered others who can relate to what you are living with, it must get lonely and isolating at times to have a condition so intruding yet so little understood.. I thing you are utterly amazing bonny lass, you are such a fighter, regardless of what life throws out, your spirit and your love shines out. x

Daryl said...

Keeping positive vibes headed your way, Doris, its a true comfort to have others to talk to who know exactly what it is you are feeling...


Not Afraid to Use It said...

How PHENOMENAL to have found so many in your area! I am so happy for you. If nothing else it is another outlet in which you can express your frustration, and they will totally GET you. What wonderful news!

Jo said...

Riverpoet, your blog always cracks me up. I never know what to expect here. I am just catching up on my blogging, and I enjoyed the last few posts you have posted, but I am really sorry to hear you are still in such pain. I think finding a support group will help you. At least you can laugh and cry together.

LOVE the breadman, by the way. Omigosh!

Cloudia said...

You are a beacon.
The openness and humanity of your blog just humbles me.
Please drop by for a few moments of relaxation. i'm trying to make my blog a healing experience.
Aloha from Waikiki, C-

the walking man said...

Hear hear for being pain free and for biting the head off the water melon ghoul!

Hilary said...

Finding support is always helpful.. finding support in those who know what you're going through is a true gift. I'm glad for you. :)

Jay said...

The sense of relief when we find others who struggle with the same issues as we do ourselves can be amazing. It's so helpful to be able to talk things through with people who not only understand and don't think you're crazy or a hypochondriac but who may actually have some ideas you can try.

I'm glad you're relatively pain free at the moment! Long may it continue!

Oh, and I LOVE the watermelon men! LOL!

Dianne said...

it is wonderful to have people to share with who get it, it makes it so much easier

I love the self-torturing watermelon man!

RiverPoet said...

Blogger was really eating comments yesterday. I posted a comment in response to all of you, but it is gone! *Frustrated!* So here we go again....

Moannie - Thank you, but I didn't carve these. My carvings end up looking like something a child did with kindergarten scissors :-)

Shrinky - You rock! Thank you for the kind words, and yes, "isolating" is the perfect word for how I feel sometimes. I'm glad to have met some other people who understand.

Daryl - Thank you! They were all very cool women...

NATUI - They were all pretty amazing women. It felt really good to be among them.

Josie - I'm so glad to see you around again! And I'm very glad you liked my posts. Yours today on Van Gogh was splendid! Very informative!

Cloudia - Thanks for stopping by the License! You live in my favorite place in the world.

WM/Mark - That melon man had to die...

Hilary - Thanks! The only scary part was the scars they had. Unbelievable zippers up the backs of their heads. Yow!

Jay - So glad to see you here, my friend. Every one of us talked about how the doctors thought we were just under stress, seeking drugs, or just hypochondriacs. It is terribly frustrating, particularly when the problem is clearly anatomical! We get blamed for their lack of expertise in this area!

Dianne - How true! And I'm glad you like my melons - hah!

Peace - D

Lavinia said...

Hi Riverpoet, I'm getting caught up on the blogs this week, as I fell off over the past few days (life, bizzy, you know how it is). Anyway, these are cute pics!

I agree,that watermelon alien would creep me right out. I'd spit seeds at him I guess...

I am glad to hear you have a feeling that you are entering a good cycle. I hope it lasts a long long time. You sound quite optimistic in those post, which actually, you sound optimistic in most posts. You have an incredible spirit. I'm also glad you found this group. You know, chiari sounds like an italian wine! I just had to say that!! Not to make fun or anything, I know its a serious condition but it does have a lyrical name. Of course, I wish you had never heard of it and did not have to deal with it, but I'm really appalled by what some of the women in that group are going through. So many surgeries, coping with motherhood,having your partner abandon you? That is terrible!

Blogging is such an eye opener. How can I complain about my dad not fixing his hearing aid and having to shout at him and still not be heard, and being so aggravated by that, when others have to cope with so much worse.

I hope you have a great week. Your husband is a real gem. I read your other post about him. He was put through the wringer as a child, that's for sure. Walking nine miles to work? Incredible. So good that you two found each other. You are his angel!

RiverPoet said...

Lavinia - The one thing I know about life is that we never know what we're going to get. We just have to keep plugging on. You have your challenges (with your father) and I have mine, but they neither contribute to nor lessen the other's frustration and pain. We simply deal with what we're given and learn from it. Your dad is lucky to have you.

Peace - D