Just venting...

Hopefully this is the right place to vent. I think about my a l s specialist appt. Thurs and I'm getting really afraid. Afraid even a specialist won't know what's wrong with me. I've had a lot of tears-even just watching silly commercials. Not sure if it's just stress and/or all these body limitations getting the best of me or liability. Can't control my emotions.

I miss going for walks. Me and my husband used to walk in the rain holding hands. I miss playing w/ my teens and taking them places. I miss hiking, bicycling, and gymnastics. I miss playing the piano and walking around with my babies who are teens now. I hate the saliva building up in my mouth. I hate that my arms get too tired to hold my iPhone. I hate it when family members tell me I sleep too much (fatigue) and need to get out more (can't drive). Nobody understands what this thing is doing to me but you guys. I'm really sad today.

Thanks for listening,
Kate

Kate,

I'm sorry! I understand as I'm up at 3am sick with worry over a stupid BiPap machine and Rog's breathing difficulties. He, like you gets fatigued easily and isn't driving anymore, has saliva issues, can't talk anymore and has trouble holding his granddaughter. I hope you get some answers... I am sad, too. Hugs and hugs,

Jen

I too don't know what exactly is wrong with me, but I know something is. Hang in there and maybe we both will get answers at some point.

Kate,

Sometimes, when I'm stressed out - I cry easily too. Emotions are just below the surface, simmering, and the least little thing can bring them to a full boil and eruption. I miss my "normal" life too and as I see it in my rear view mirror, my old life just gets smaller and smaller. But, when I look ahead through the windshield, beyond the splattered bugs, I see the bigness of the world before me in all it's wonder.
Not everyday.
Some days I can do little more than stare at the rear view. .. looking for what I might have done differently and thus avoiding the detour along this rutted road. This bumpy highway that can blow a gasket, makes me feel like my car has square wheels.
Lucky for me, my passengers are firmly buckled in their seats and along for the ride with map at the ready.

With any luck at all, we'll see a "please slow down - paving crew ahead" sign soon!

I wish you the best of luck on Thursday and truly hope you get good news!

Good luck Thursday, Kate!
Rest whenever and for however long it takes.
This fatigue can feel pretty overwhelming.

Kate, I pray you can get some answers on Thursday. Living with the unknown is frustrating.

Elaine, I love the way you phrased your post - makes sense to me!

Elaine, you write with such grace giving us all hope. Kate, I know we all have days that we look back and wish we could have our old lives. It takes energy and faith to live in the present. It takes courage! Living in the past will not help any of us. Wishing you the very best and certainly validating your experiences for you!

You guys are great. Thanks for the understanding words. I'm ready for another nap now.

kate, i pm'd you with details on the clinic.

Kate, I hear you loud and clear... started crying today because this summer has pretty much sucked for my sons, I can't even take them to get an ice cream anymore,,, because of a simple question "how are the kids dealing with your condition?" It's harder some days than others.

Elaine, you said it so beautifully, thank you...