You all are wonderful

Thanks everyone for your help;)

I forgot who said what, since i just read all of them at the same time, but you all are full of so many kind words and great advice.

Here is my update:
I cried my eyes out at my obgyn visit. He told me to go see me neuro. Told him he wont do anything, so he suggested that i go to University of Michigan Hospital (super research hospital with the best of the best). So, today i called my neuro, gave staff my update, and asked for a referral to U of M. Now my neuro wants to see me tomorrow, but his staff said, “Well, if you haven’t had the baby yet, then U of M can’t help you either”. I’m not sure i believe that. And, id like to hear it from them. Thought i’d atleast ask him for a CPAP machine or something, for those suffocating times im so afraid of.

My obgyn wants me to go full-term, but my take baby in 2 or 3 weeks, depending on my health.

I will have an epidural at delivery and they will take spinal fluid then (my idea, not my neuro’s).

Cried in front of my husband when i got back from my obgyn appt. He doesn’t acknowledge the tears, but did ask how my appt went, which is his way of asking whats wrong. I didn’t want to dump all of my emotional baggage on him, so i just told him that i am really frustrated with my health. He had nothing to say, just listened, which is all i needed. I didn’t tell him that, though. I need to do that asap!

I’ll try to talk to my hubby, but it is something i have to plan ahead. He loses me after about 1 minute. One thing that has worked is to ask him to lay down with me, and then i try not to say a word. Him just being beside me is a huge help. You know girls, how men make you feel safe? That is it; that’s why it helps. I will put his hand on the back of my head, without saying anything, and he will run his fingers thru my hair and rub my head and neck. That does wonders. But, like i said, he is gone 15 hours a day, so he doesn’t really have time for stuff like that.

About my breathing – i wondered myself if it is anxiety, but it seems different from that. It comes with pain and exhaustion. It feels like a charlie horse around the bottom of my ribs that works its way up. I lose my swallow sometimes, too, for a few minutes and it is like that. My soft palate function and gag reflex have been absent since the beginning of this, but the swallow and facial paralysis come and go at random. So do the legs. This morning i lost my swallow and i vomited about 20 times. When i wake up, i have to rinse my mouth or drink water several times before i stand or i will choke. That is what made me choke and then vomit this morning, and the water was coming out of my nose (not a ton), which is new. All i had to do was put water in my mouth and the war was on.

ABout keeping myself busy-
I hve been knitting my first blanket since i got sick 6-7 months ago, but the repetative motion makes me really sick:rolleyes: Seems silly but its true. ALso, made my first quilt for my 7 year-old, but i still have to finish it. Just hard to finish it. I watch tv a lot from my bed, talk to you guys, and edit my photos. Did a flickr last night, but only 6 pics on there so far. Spent all day at my parents today and now my hubby and kids are gone, so its me and my black lab. Managed to get dinner in fridge for hubby when he gets home (at 4a.m.) and fold clothes (like 6 loads that id piled in the chair) while watching ghost hunters.

So, overall, a good day. FAtigue and beathing weren’t so bad. Got to hang out with my family. Told my doc what i thought. Didn’t waste my energy on hair and makeup:eek: and didn’t care. Crawled out of bed at 1p.m. and had lunch with hubby at my parents restaurant on his way to work. And, im all signed up for school, which starts july 7th.

Have a good day everyone. Sorry for the novel!