The wolves are in pursuit

[tamago23]

Near the beginning of White Fang by Jack London, there is an extended scene where a man is alone by himself in the wilderness, pursued by a pack of wolves. He has settled down for the night and built a fire, which is the only thing keeping the starving wolves at bay. But he knows it is simply a matter of time before the fire dies down... and when

Comments

[ebongreen]

Hi. I'm a friend of philady's.

I was diagnosed with Marfan's about twenty years ago, so the wolves are familiar to me. If you'd like to talk to &/or friend me, let me know, and we can share perspectives.

Peace be with you. :-,

[tamago23]

I would love that, actually. Thank you for contacting me. :) Understandably, the time when you're waiting for a diagnosis is rather nerve-wracking - at least once you have a diagnosis you start adjusting your thinking to compensate, yk?

[ebongreen]

Well, kinda. My diagnosis has fluctuated over the years.

An elder teaching-doc at the UW-Madison first assessed me as a Marfanoid back at my pre-college physical. I generally fit the type: hypermobile, tall, slender, unusually long arms, flat feet, myopia. I've been tying myself in knots recreationally since childhood; was always twisting my ankles; and was relatively fragile physically. So when he said, "I think this is your shoe", I said, "Oh, that makes a lot of sense." Since then we've discovered minor mitral valve issues, some arrhythmia, and other traits that generally fit the Marfan mold.

Several years ago, I had a blood test done to see if I was genetically one of the Marfan types they knew, and the test results came back negative. So now I kind of hang out in the "it still looks a lot like Marfan's, so I treat it a lot like Marfans" space. If there's a practical difference between strong Marfanoid resemblance and a positive genetic test confirmed case, I don't know what it is. The genetic expression is variable, so some

[tamago23]

LOL, I loved goofing around with my flexible joints too. :) At the assessment the doc asked me, "Can your family members do stuff like this?" and I said, "Uh, I don't know - I never *saw* them do anything like this, but they didn't enjoy freaking people out the way I did, so I don't know." They all laughed at that.

What aspects of how you live your life now would you change if someone said for certain that you had Marfans?Since having a child, I've been super-conscious of anything that could cause me to die; I feel an enormous responsibility to continue living until he's old enough that my death wouldn't be utterly devastating. So anything high-risk that I used to do is over with. If it's confirmed that I have Marfan's, then I will not return to rock climbing (I stop during pregnancy since I'm so exhausted anyway, but usually return to rock climbing after pregnancy); I may or may not return to bellydancing (depends whether I think I can do so safely), but if I do, I will wear a pulse monitor so I can stop dancing if my pulse rate

[misslynx]

I understand how you feel, at least as well as someone who hasn't been through it can, which I suppose probably isn't all that well at all. But please try not to feel so bad about having had kids

[tamago23]

Gavin is an amazing kid, and whether he lives to be 25 or 125, he will have made the world better just by being in it, and so will you for having birthed him. I know that doesn't take away from the fear you have for him, but I'm hoping it at least may make you feel better about having him.If he has it, the only thing that will ever make me feel better about it is him telling me, when he's grown, that he's happy to have been born even despite having the challenge of Marfan's. I don't care that he's enriched my life or other people's lives; this isn't about me or the rest of the world. I care solely about him, and my terror is that through possibly giving him this condition, I have made his life more difficult than worthwhile