(((( Lolliboo and Rileyearl ))))

Discussion in 'Fibromyalgia Main Forum' started by orachel, Nov 7, 2005.

  1. orachel

    orachel New Member

    Hi all, its me! LOL

    Dang email still not letting me in...must be incompatibility with my home computer, because hubby's laptop works fine...of course its not here most of the time.

    Just want you both to know I'm hanging in there after last nights serious vent fest...just gets a bit overwhelming at times...I know you both know how that is.

    I'm still seriously worried about the marriage issues, but all getting insanely upset about it will get me is well...insanity, I suppose. And I certainly don't want THAT in my life! LOL

    Sleep center called me today. Problem with my sleep is a lot more severe than they initially thought....I'm stopping breathing frequently so have to go in for another (awful! wretched! torture!) night and let them hook me up to sleep machine....

    Will leave there with a snazzy machine that I wear when I sleep (as if I needed yet another device, prescription, doctor, procedure, treatment etc to make me feel even more dehumanized...now I'll look like a dang cyborg when I sleep! LOL) and still have to have surgery. Oy.

    Am officially waking up 40 times every single hour that I'm asleep....That's more than once every 2 minutes! And am stopping breathing about 9 x every hour (not nearly as severe as Francie...did you get a machine, Francie? Are they talking about surgery with you?) but 25x per hour during REM sleep...which I'm not getting NEARLY enough of anyway....Tech dude says this explains a lot of my cognition issues, etc...so that's good, I suppose.

    And my Deep sleep (which should be about 15% of my overall sleep at my age) is less than 1.5%....which explains why my body isn't healing some. Well, all in all, good to know this stuff, but I wish they were more CONFIDENT that if I have this surgery and get this crazy machine that I'll FEEL BETTER! They just refuse to comment on that, or render any sort of a guess as to how much these (drastic!) measures will lower my pain or fatigue levels. I get the impression that even doing all of this doesn't really improve things for some people....that's freaky, especially after the risk of surgery.

    Aahhh,...well, missing you both...Hope you're both hanging in there. Would love to hear from both of you, but I can't figure out the time difference (yes...it's true. I am officially a moron!) so can't figure out when less likely to interrupt kid time or work time...brain has stopped functioning for the most part.

    Oh...and I realized I didn't even tell you guys what sent me into such a funk over the last 2 days (aside from unrelenting worstening physical pain, that is!). My stepsister called me. Remember when I told you guys that her stepmother (Marlene..that's easier to keep straight) was stuck in Thomas Jefferson Hospital in Philly (i think) to get treatment for a small tear that's leaking her spinal fluid everywhere in her body? Well, she's still there. They've tried to fix the tear, and have ended up simply causing more tears. Kristen (sister) told me that when the put contrast in, it simply flowed everywhere in her body.

    How freaking terrifying is that? And then I read an article (who knows how reliable) that FM is almost always caused by deformities in the brain stem connecting to the rest of the body....sounds right in this case, huh?

    And then I get started thinking about Marlene (who I barely know, by the way...have met a bunch of times at kristen's functions, but don't know her or her husband...Kristen's father, very well) and how much she's gotta be freaking out now. Apparently she can't walk barely at all...all motor skills are totally off kilter. And this is a family with MOOCHO money.....very very well to do. Kristen comments really casually that they're "taking turns" going to Philadelphia to be with Marlene in the hospital. I was like, well...that's good....can't imagine going thru something like that alone in a hospital thousands of miles away from my home....(they live in florida...hospital in philly). Then Kristen says "yeah, we're trying to make sure someone's there with her at least one or two days every week". I'm like whaaa???? Her daughter who is totally spoiled (not kristen...marlene's birth daughter) can't take a leave of absence and go spend days with this poor woman stuck in the hospital and scared to death? Her son can't go? Her siblings can't go? Her stepson and stepdaughter can't go? What about her husband? Geez...she's been stuck in this hospital for months alone dealing with this...has been thru at least one brain surgery that I know of.

    Anyway, you get the idea, but it scared the everloving poo out of me.....Just thinking how horrific and terrible it must be to be treated as "disposable" by your family. Again, there's no money issues here...just a lot of selfish people too wrapped up in their own lives to be there for her. I ALMOST told kristen to have her dad Kevin (marlene's husband) call me...I still might, at that. God knows, if he's willing to fly me there at least I can sit quitely with this woman and be a person (other than a doctor or a nurse who are PAID to see to her care) who she can talk to and who treats her like a human being, as opposed to a patient. I just flat out cannot imagine the depression she must be going thru (she's always had problems with depression...or at least since she got sick with FM and CFS) stuck in that hospital alone and scared with spinal fluid running rampant inside her body cavity.... Something about that just freaked me out...I don't know.

    Guess it made me think of worse case scenario things....

    So, that's why I'm so morose and messed up. Plus, tech guy from sleep center told me that REM determines moods and severity of depression, and I'm getting almost none, so he made it clear that this would have some affect on my moods...think he's right?! LOL

    So, that's all she wrote (quite literally!) for right now at least. Hope you guys are feeling good. Francie, can't wait to hear about the sale on Saturday....Lollie, hope you're hanging in there....Oh, and needless to say, Lollie...You and me both gotta get checked out by a very competant Neurologist! The fact that these spinal fluid leaks and ministrokes and tiny holes in the brain are even possible for us....we all need to see a dang neurologist just to make sure we're ok in that area. I'm almost starting to get obsessive about this, I fear. I just cannot imagine permanant issues with brain function on top of everything else, so important we all RULE THAT OUT asap.

    Man...I need to get to Mexico quick to decompress! LOL

    So, what started as a note to let you guys know I'm doing better and not so bummed out turned into another rant session....Think I'm just spending waaay too much time alone, but not really sure what to do about that. Give yourselves hugs and kiss from me...sure your neighbors will think you're nutso wrapping your arms around yourselves, but I feel like hugging each of you, darn it! LOL

    Hugs, big ones...
    Rachel