DancingLight...

[DancingLight]

Hello My Dear Friends...

I miss you all so much...and I haven't been able to post like I so love to do. I try to check in a bit and see what's going on (Newbies, Morgan's hospital stay, Nina's yucky time, Ernie's conference, etc...) but am not able to read much or post...

Since this is a 'no apology necessary zone' (coined by our Nina)...I will TRY to not apologize. I just really needed to check in with everyone here...I do hate to post when so many others are in the POTShole too...It just adds another post to keep up with. But, aaahhhh, I can't stay away from you all so long!

I kept waiting to post with some more 'up' news or just jump back into my usual groove of posting...but alas, the days go by and that's just not happening...

For those of you who have followed my 'GB Year' (2006 MUST be better)...I'm back to feeling as weak as I did in April.

I can hardly complete my ADLs and am closer to being in bed more and more than I have ever been (other than post surgery or med reactions). I'm puzzled. I need help with EVERYTHING right now and am so weak.

I feel PHYSICALLY ILL constantly. No matter what...even listening to a book on tape makes me so tired and I feel sick. But, as you know, I don't rest/sleep very well either!

I am really struggling emotionally too--I fight so hard every day and why does it just get worse? I'll admit...turning 30 soon is NOT helping the situation.

Anyway, the docs are 'on it' as much as they can be...but it is hard to hear them even say--we don't know what to do for you and to think about trying more meds and all of that jazz.

I'm soooo ready for a vacation from being this sick. A moment of clarity. A moment of not feeling like my body is a wet dishrag. The past year has challenged me beyond what I ever imagined---and I really thought I was getting the hang of things after so many years!

Well...you all know me pretty well--and newbies--look out b/c you're stuck with me too! and I know I will Dance in the LIGHT again soon...right now I just needed a little lifting up. I will keep fighting for answers and solutions...some days it just seems so extra tough. And of all people--YOU all understand this!

Thanks so much for 'listening' and letting me vent! I am ever-grateful for this refuge...

Hugs and missing you all so much!

Emily

[MightyMouse]

I feel for you Em. Hang on... this shall pass (at least that's what I tell myself, so I'll tell you too). Big Hug. Nina

[Ernie]

Hi Emily,

I am so sorry that you are doing so bad. I can relate to you because I was bedridden for 2,5 years and homebound for 4,5 years. I am slowly getting better but the progress is very slowwwwwwww.

I miss your posting but I understand that you cannot post as much as before because of your health issues. I know how difficult it is for you to be away from Dinet.

The most important thing for you presently is to get back on track.

I will be thinking of you.

Ernie

[yogini]

As much as I like the Springsteen song, Dancing Light should NOT be Dancing in the Dark. Hope you get some sleep and feel better soon!

-Rita

[Poohbear]

Awwww Em......you make me cry. I hear that things are tough for you right now. I can relate to wanting to cry because you want so badly to have a good day. You get tired of people asking how you are because you either feel a need to lie and say "I'm okay" or you feel angry because you get tired of hearing your own self say, "I feel like *#@(".

I don't know about you, but I tend to lose my patience with this sometimes and I tend to get angry and take it out on myself (which is not helpful).

I'm sending healing thoughts and warm hugs your way!

I'm glad that you are still able to log on some and read even if you don't feel up to posting but I do miss your posts.

TTFN,

Poohbear

[Guest Julia59]

Emily,

I hope the Docs will find some way to get a handle on this soon. I'm rooting for you all the time---you know that---------------

If I ever see you again some day----I hope to see you dancing all over the place.

I'm in a hole of sorts myself-----but you have it so much worse by far----I just wish I could share the bits of energy I do have with you.

I don't know if this would make a difference for you or not, but have you tried cerefolin? I have found it to help my stamina and cognitive function. Although it doesn't fix all my issues, it does help take the edge off a bit.

I feel like a whiner sometimes when posting my problems---but I try not to feel too bad as this place is virtually my only support outside of my husband who is getting worn out. I understand that it is very difficult for you to post and even read at times, so don't give it another thought, just try and heal.

You have so much going on right now---and yes it will be emotionally draining.

When you go to bed at night, you want to sleep, but you can't. When you go to bed at night you want to wake up feeling better if you DO get a chance to sleep, but you don't. There are times that i'm sure you just wish this was all a bad dream.

Take heart Emily, I have heard that some people in the deepest of pots holes have crawled their way out----and one of them actually RUNS if you can believe it!

Your day is coming Girl----you will dance again......

Julie :0)

[Guest tearose]

Hey Emily, you should not forget that you were "green" for a looong time and that you have improved in some ways...keep being gentle with yourself and allow for your body to figure things out. I am sure you can find one small goal to reach...like faithfully doing one ADL every day all by yourself. Do you recall when I couldn't manage ? If a "seasoned"many years pots person like me can make an improvement happen, you can too! I am hoping you can pick yourself up by taking one small step at a time.

I will write more but for now, I must try to get sleep...

take care, tearose

[calypso]

Sorry, Emily, about feeling so yucky. I just don't know what to tell you but wanted to say I'm hoping you improve again soon.

Take care,

Amy

[steph37822]

oops

[Gena]

Em,

I know you....you will not only be dancing in the light again, you will be doing the moonwalk, jitterbug and the tango!! Give it some time. I've come to realize how cyclical this illness can be. Sometimes it's scary thinking the cycle won't come around to the other side...that we'll never see the bright side again, but we do eventually. Hang in there girl. Hopefully you'll get some good nights of sleep in the near future too. Some good solid zzzz's always helps to to turn my world around. I hope you find the light soon.

Hugs and well wishes

Gena

[DancingLight]

Hello all!

Poohbear? I made YOU cry???! I'm crying from reading all of these posts! You are so right about getting angry sometimes...I get so mad at my body (I know, not helpful)

I knew you all would lift me up! THANK YOU!

I stopped a med on Friday (Topamax), have had IVs twice and just a teeny bit today I didn't feel sooooo ill. I must be feeling all of your good vibes (and Steph's sassiness! )

Thank you to all of you for your thoughts...

I AM getting a bit of sleep lately, and I totally think it is the MAGNESIUM that you all recommended! I meant to post an update on that thread and will try to later!

Hugs and I'm hopefully off for some sleep...

Emily

[DancingLight]

P.S. Steph...PreggiePops are lollipops--I think they now make QueasyPops--and they are ginger flavored and other natural things to help with nausea. They were originally developed for morning sickness, but are good for other types of illness/nausea and I love them...and I am not planning on little ones either! Unless of course, by immaculate conception? Ha! And...I HATE echos too--I know they are the simplest of tests, but they do really hurt when they dig around in your ribs so much. They do say that they are actually harder to do on us skinny folks! Weird.

[tammyokc]

Hi Miss Emily! Boy I hear you my friend. I too haven't kept up with everyone and don't get on the site as much as I wish because of dizziness. So please know you are NOT alone. I too want to be the person I use to be...able to help others and not be the one needing the help. I just have to believe that our lives will one day mirror what they use to be. I am trying so hard to remember the blessings I do have and know it could be worse, but i know there are many nights you wonder if that could be.

Boy this Katrina Hurricane has made me know that!!! We could be in our situation and homeless. So hang in there my dear sweet freind. Your caring and sweet disposition always come through on your posts even if you feel you can't always chime in and say what you want to say. WE ALL LOVE YOU!!!!

Guess the lunesta isn't doing the trick. I tried it (made me dizzy and heavy headed and more sick) so had to go back to ambien and my doctor up'd it to 20 mg a night if I needed it. UGH! I'm praying something helps your sleep soon my friend.

Peace to you...

[Roselover]

Hi Em,

It took me a while to post here because... well, what you wrote is exactly how I've been feeling. I try to check in, and today I can at least see a little to write you a quick note of understanding.

It's discouraging and hard to deal with. I think of you often my butterfly friend. Maybe someday soon we'll both peek out of this hole we're in.

Love ya,

Roselover

[corina]

Hi Emily,

I'm so sorry your in the hole. I'm not doing too well myself. Our trip to France was great and I LOVE my photo's and I do know it was worth it, but in fact it was too much on me. But we had such a nice time, you see. We were like a normal family with friends eating together, talking together, having fun together. And I sooo loved the weather. But it was bad for my POTSybody. But when I'm watching my photo's (my hubbie put them as screensaver on our downstairs computer) I keep smiling and feeling the French sun and warmth. So I'm sending some of the warmth to you now. I don't mean the warmth of the sun, as I think you've had enough of that this summer, but the warmth of very special friendship. Can you imagine, that, if we didn't have POTS, we never ever would have met??? So, in a way, the POTS takes from us, but also gives back. Warm wishes to you Emily,

Corina (that's my new slogan: keep smiling)

[MomtoGiuliana]

Hi Emily

I am so sorry that you are so challenged right now. You have to believe that it will get better. We all seem to have ups and downs, some more than others, but this pattern does seem to be a hallmark of this condition. I am glad you have some responsive physicians.

Glad to see you saw some light today! Hold on to that! I hope it continues.

Katherine

[Aprilmarie52]

Emily, I am sorry that you feel so bad. Hang in there. There is light at the end of that tunnel you're in.

[avais1]

Hi Em,

Sorry, I can't post more, I have had some POTS holes too! But know I am thinking of you. Hang in there!

[Madwife]

Oh Emily you've brought a tear to my eye, as i'm sure we all do it's because we know where u r coming from and it is so hard to see others going through the same! Keeping u in my thoughts and prayers...u hang in there hun but know it's hard...u will dance again!

[Laura]

Emily, I'd been thinking of you and wondering how things were going. I hope stopping the Topamax will lift some of your symptoms. You've had such a difficult time. Hold on and keep pushing forward. Laura

[wareagle]

Hey Em..I feel you girl..I don't have much else to add..just second everything that has been said..I've been thinking of you and when I saw this post I just had to reply even though I have no magical words to make you feel better.

Sending hugs your way

[steph37822]

oops

[DancingLight]

Thank you all so very much...

I saw a spiritual counselor many times who, when I was struggling so much to hold onto my spirit, told me that when I felt like I could not sing my own song, others would sing it for me.

I think so often we do that for each other on this site, and it is really amazing b/c we are ALL struggling so much.

A little update:

I had an appt. with my PCP today and he also paged my POTS doc while I was in the office.

I feel like we at least strategized and came up with a bit of a plan...which always makes me feel like I am being proactive as much as possible. I do not want to endlessly pursue docs or senseless pursue other things, but I am at a point where I am getting worse, not better, and want to at least rule some things in or out. My quality of life is so very low, that it is worth it to me to do a bit more investigating.

So...here's the update...

--My POTS doc still feels that I am reeling from the GB surgery and that the intuabation/positioning of my neck during the surgery was the trigger

--I am going to pursuse the possibility of Lyme disease further, seek out a Lyme Literate MD, and have the testing done again. My PCP completely supported seeking out a doc who is a LLMD and is so validating.

--See a neurosurgeon who travels to our town from Hershey Medical Center if he has any knowledge of ANS stuff (my PCP is going to talk to him first)

--Try Cymbalta instead of Effexor to see if it is more effective/less agitating/less interfering with sleep.

--Email with my POTS doc next week some more

--Pursue some other PT options, as my PT person feels pretty 'stuck'

Of course, this will all happen slowly as I have NO energy. The thought of even getting to the appts. is overwhelming! But, worth it. I don't know how long it will take to get appts. scheduled and stuff either.

Also, I just love my PCP b/c I cried in front of him today (not the first time) and he is just so compassionate. While I don't think he is 'brilliant' and is very overwhelmed by the complexity of my case, he 'gets' me so well. He is so in tune with my sensitivities to meds and very careful about that. I know he just feels so helpless though. He is also being more assertive now that he sees how sick I am and unable to do all of the managing of care on my own, which I really need right now.

He held my hand at the end of the appt. and said, 'take care, my friend.' He is so compassionate.

So, I am feeling a little better and like my medical care is getting a bit better coordinated and we have a strategy. I need that!

Whew, that got long, but I wanted to let you all know if you were interested! I know how much I follow the latest news with you all!

Steph...the Topamax--I did just stop it, but I was only on 25 mg and they were the Sprinkles--which you can't split. There wasn't really a way to wean. BUT since stopping it I have noticed that my 'twitching'/myoclonus-type symptoms are amplified, and after reading your email, I am wondering if that is why--going off of the Topamax. Otherwise, I don't seem to be any worse for the wear (but you must realize that's not saying much!) I feel a little more clear-headed and a little less weak off of it. Also, supposedly it builds up in your system over time? And so, while I thought I was tolerating it okay after some of the initial side effects subsided, this seems to not be the case and it may have been wreaking havoc with my system. We will see. I did not have the loss of taste that you have. But, I seemed to be moodier and more agitated on it. And even more foggy, if that is possible. Hope this helps!

Oh, and preggie pops come in various flavors other than ginger if you don't like ginger too much. I LOVE ginger, but my preggie friend liked the other flavors better when she was pregnant. They have lavendar and fruit flavors and cinnamon and it's just finding what works for you.

So, that's the scoop.

Thank you all for holding me up! I know so many of you are struggling so much too.

Later alligators!

Emily

[StaceyYount]

Hey em!

I was sitting thinking about your post this morning and about how others will sing your song for you and this is the song that started going through my mind and I wanted to share it with you and with all our fellow dancers!

I sing the body electric

I celebrate the me yet to come

I toast to my own reunion

When I become one with the sun

And I'll look back on Venus

I'll look back on Mars

And I'll burn with the fire of ten million stars

And in time

And in time

We will all be stars

I sing the body electric

I glory in the glow of rebirth

Creating my own tomorrow

When I shall embody the earth

And I'll serenade Venus

I'll serenade Mars

And I'll burn with the fire of ten million stars

And in time

And in time

We will all be stars

We are the emperors now ( Not sure what this means but good I think) :-)

And we are the czars

And in time

And in time

We will all be stars

From the movie FAME

Anyway it seemed that it describes all of us and maybe it is cheesy or silly but to me it seemed perfect!

Stacey :-)

[Sunfish]

heya em -

i know that you already know that i'm pulling for you & wishing & could do more, but just wanted to send you big (((HUGS))) on here too...no such thing as too many, eh? keep on hangin in there.

me