3 Months Today w/out GB...

[DancingLight]

Hello My POTS Pals,

I just needed to 'check in' with y'all today...

I cannot believe today is three months since I had my Gallbladder out...

BOY, I never expected this for recovery! OH MY!

Beyond the physical 'junk', I am just feeling OVERWHELMED and GUILTY. All the things we tell each other not to do to ourselves!

I check in to the board as much as I can, but most days, I don't have any energy left to type. I feel so horrible about this and it is really hard...I want so much to be able to respond to posts and emails from you all...

I felt I had to post today just to say...I'M OUT HERE LISTENING AND PRAYING FOR YOU ALL AND THINKING ABOUT ALL OF YOU EVERY DAY. when something is going on with someone (i.e. corina's dr. visit, geneva's a/c, ernie's hospital stay, morgan's son jake, and on and on...), I keep checking in tto see what's the latest if I can.

So, I just wanted you all to know how much I am struggling to keep up! I miss you and not being able to type and respond to posts and emails is one of the hardest things for me...this site is so wonderful. PLUS, I feel like so many of us are in the POTShole (what is up with that???? The Inn is FULL!) that I want to help up...I think Katherine and Morgan are the old-timers who are officially keeping the board going for us right now!

Somehow, I just needed you all to know how much your emails and posts to me mean...and that I soak them in. I know how much an email in your inbox or in response to a post can lift spirits...which is why this is so hard for me. I hate that so many of us are having a hard time and no energy to type!

In other news...hmmmm...what scoop do you all want to know? Any particular questios about the surgery, recovery etc???? So much has happened!

I will say...I am starting to realize that my GB needed to GO! I do feel better in that regard.

In comparison to a few weeks ago...I'm doing much better (no more best friends with the throw-up bucket, shaking 24/7, etc. etc.).

Still, I am not able to keep up with my own activities of daily living yet. I need help still with getting out meals, getting out stuff I need, and getting a bath (the hair washing part!)...All of my energy just goes to getting through the day...

I feel HORRIBLE all of the time...so this is hard. No concentration either!

Also, I finally have a wonderful POTS doc, but now, I am going through the whole process of trying to change meds...so every day is very unpredictable. Right now we are trying to find my 'opitmal dose' of the bb. My body seems so different post-GB, but it's trying to figure out now what works and what doesn't!

I am still completely homebound, and mostly 'upright time' is in the recliner. Still can't watch TV or things like that, so am doing some knitting and books on tape and good music.

My PT is coming to my house 2x a week which is a big help! And, we have a wonderful caregiver who comes in three times a week. These wear me out!

My big outing every day is to go to the mailbox...and take in the forsythia, weeping cherry tree, and daffodils...everything is glorious right now!

Anyway, this got long...and none of you even have the energy to read this whole darn thing!!! If you got this far...thanks!

I really didn't want to even post b/c the volume of posts right now is so much! So, just know how much I am thinking of you all and reading your posts...know that as soon as I am back into the Dswing of things...I'll be here in full swing! Because I love it here!

I just needed to say Hi and check in and reflect a little on this whole past absolutely CRAZY past three months! (I feel horrible complaining knowing what some of the rest of you are going through...sorry!)

Until then, please take good care of yourselves! I'm holding you all in my heart!

To all of you in the POTShole with me...I hope we find our way out soon!

Until then, I'm just taking it ONE DAY AT A TIME, ONE MOMENT AT A TIME!

Later to my favorite alligators,

Emily

P.S. Geneva: how are you feeling 3 months post-colonoscopy?

[Ernie]

Hi Emily,

I am sorry you are still fighting so hard to recuperate. The positive side is that you are improving even if it is a slow process.

I understand how difficult it is so follow on all the posting but don't worry. We know how sick you are and how involved with the group you are.

I enjoy reading your answers and I know that you are doing your best.

Take a rest when you need it and please don't feel guilty about it.

Hugs

Ernie

[Guest Mary from OH]

Hey Em-

Your stroll to the mailbox sounded wonderful!! (You must not have allergies!!) LOL!! I wish I could enjoy spring more. It's so beautiful, but I'm so miserable...

I'm glad to hear from you whenever you're able to pop in! I know what you mean about being drained. I haven't been to the board in forever it seems. If I have a msg sent to me, I read it, but I was so sick last week with my migraines.

We love you and pray for you whether you're able to write or not!!

Love ya!

You are a breathe of spring and fresh air!

[calypso]

Emily,

I so wish you could be feeling better than you are. I am glad that at least the gallbladder was taken out appropriately. That wouldn't have been good to get rid of an organ you might have needed!

What exactly makes you feel horrible? Are you nauseated? Just general fatigue and sick-feeling? Tachy? I want to help by offering some ideas but don't know exactly what you mean. I assume you are weak, and PT and activity is really the only fix for that. I hope you're taking a multivitamin in case you're not eating well, just to cover you nutritionally.

Try to sit outside as much as you can. Fresh air is essential to healing. In the meantime I'll be thinking of you. And again, don't EVER feel bad for not posting. We all know you want everyone here with this yucky illness to feel better.

Amy

[morgan617]

Sweet Emily, since when do you have to post for us to know you love us????? And we love you. Just take good care of yourself, and get better. Besides, I can see you from where I am, and I am saying What's up with that too! BTW my hubby had his gb out last Oct, and still has the occasional, oops shouldn't have eaten that greasy thing that just went straught through me blues. But his are going away too. He feels much better too. Morgan

[DancingLight]

Hmmm...

Amy, how to describe how I feel? Well, we think the major cause of my POTS is either Cervical Spinal Stenosis or some other weird neck thing. So the PT is for that...using the oomputer, doing certain movements (Katherine, are you reading...tilting my head back!) causes POTS symptoms, especially agitation and heart pounding, as well as neck pain and discomfort.

I have had a horrible time with meds post-surgery...so some of the inability to get stamina has come from that. First, the clonidine was making me shake, puke, panic, etc. etc. It was not pretty. Terrifying, actually. I have a new baseline for bad, and for unbearable.

Now, the PT can also make you feel some worse as you go as well as fiddling with all of the meds. I may be overmedicated with the bb or just not on the right meds, and as you all know, finding the balance is a challenge.

I am not really tachy and my appetite is pretty good now. It's more that I have that horrible lack of concentration, can't see straight, agitation, feel like the blood is leaving my head, have to lie down now thing, the neck stuff, horrible pale, etc. I don't know, sometimes I feel like that doesnt' even sound like POTS! The exhaustion is sooooo overwhelming that I cannot see straight and everything is overstimulating. My sleep is horrible.

Yup, taking a multi-vitamin and getting fresh air! However, I got burned!!! It is a disaster, I got sun-poisoning I think a bit and I really cannot believe it as I wasn't out long at all.

I push as much as I can, mostly until I fall over...but it just seems like I'm not making the progress as I had hoped....we'll see...

As for the GB, I still get stomah junk everyday after lunch, but otherwise the symptoms are much, much better. It was very inflamed and had scar tissue in the bile duct and artery...so probably was going on for a long time!

Does anyone else have this kind of thing where they just cannot focus to read, do computer, even talk to someone???? I literally just go white as a sheet and look like absolutely crappola!

Lastly, thank you...I needed to post and needed your words morgan, mary, amy, ernie...I think my struggle right now is that I know how sick YOU are and feel like it is MY TURN to give back and I don't have it in me at all as much as I try. Today has been my first day of some clarity (as you can tell, I am rambling). I just am so committed to DINET and this website/community that I didn't want people to think I just took all of your well wishes and cards and emails and then said, okay, I'm off to live my life now and not stick around here. I'll be here always, in whatever capacity that may be!

Oh good grief...this is LONG! ernie, help me learn brevity!

Overdue for a rest...I'll probably crash now from doing this, but I needed it. Thanks...

Emiily

[MomtoGiuliana]

Hi Emily

Yes, I am reading this I didn't think my POTS had any connection to a neck problem, but I do wonder now.

I can relate to the surgery recovery time. Three months after my c-section was my worst pots time ever. Recovery is sooo slow for us. Three more months from now things may be that much better still for you.

Ouch--sorry to hear about the very bad sun burn. I am so glad you can get outside a lot though. I so agree with Amy that fresh air is key to health.

Don't worry about posting -- particularly when you aren't feeling up to it. We know you are thinking of us--as we are thinking of you.

Katherine

[morgan617]

Emily, yesterday I was talking to my sister and I started to tell her something and she said, hey we just had this discussion! Does that make you feel better???? Mind like a sieve these days. I hate the fog. I don't know how many times I repeat stuff to Dave, he's sweet enough never to tell me, as is my son. So who knows.... but yeppers, that lack of concentation is a real gas...morgan

[steph37822]

oops

[MightyMouse]

Keep plugging along and getting better Em, we'll be here!

Yes, I can completely relate with the inability to think or speak straight. At my worst, that's what happens. I had a horrible episode at work a few years ago where someone had to drive me home as I kept greying out but not fainting and I literally couldn't see straight... my comprehension wasn't so good, and my speech was just so-so. I had come in early and was lying in my office, on the floor, trying not to freak out. I had to wait about an hour for someone to come in and she then drove me right home, where i went to sleep. Sometimes, though, sleep doesn't come easily at that point, and I just have to lie still.

Here's to hoping your ability to focus improves along with your physical well being. Nina

[lindaf]

Dear Emily, Just remember you are feeling better and improving. Don't get discouraged. Keep resting and when able, do things you enjoy to get your mind off of your illness. Soemtimes a phone call (even if only for a few minutes) from a good friend wil take your mind off of your crummy feeling. Try to stay positive, and rest. Linda

[Guest Julia59]

Emily,

You are doing a great job---bringing yourself back slowly. Don't over-do, just keep listening to your body, it will tell you when to slow down.

Don't beat youself up about posting----we all REALLY understand. I'm kind of in that boat too, only not to the degree you have it.

I have been having it rough with this goll-dang neck of mine---so the posting is slower. I still lurk and read, but typing is harder. Oh, my cat Samantha --who we lovingly call "the computer girl" is sitting on the desk with her head on my hand when I move the mouse. She is patient when I move it to type. She just loves to be at the computer with me-----she is now purring away as I type this.

Well I should go, but I just wanted to chime in to let you know your in my prayers for a quicker recovery. You have been there for all of us, now it's time for us to be there for you. I just wish I could do more to help you. You can call or e-mail me any time if you are up to it. I must warn you-----I can ramble.

Just e-mail for my Ph# if you want it. Otherwise i'll see you on the forum....

Be good to yourself.......

Julie :0)

[geneva]

Hey, Emily, I think you are improving even if it doesn't feel that way....know how I know this??? You are writing and writing and then apologizing for writing too much...this made me laugh cuz it is SO like you to apologize over and over...of course we love this about you!!

Now when you start talking about needing to go to get some delicious food item, we will KNOW you are truly getting to the final recovery stage (just trying to make you laugh a little). I am truly sorry this is taking so long for you but glad to hear that you have a good support team in addition to your mom and that they come to the house. PT can be really taxing so I am sure this is a good part of your fatigue don't you think?

Walking to the mailbox was the first milestone I achieved after the onset of POTS and being homebound so I can remember how wonderful it can be to get out and see nature at its best in the spring. I am so glad you are trying to do this as I know it is good for your spirit as well as physical activity. See, you ARE doing better. This is a good step forward!

Thanks for remembering about my procedure as well. I am fine in that regard now. My GI system shut down for 4 days at first and then went to fast forward for another week but after that it is back to "normal".

As for the A/C dilemma, I think I may be going crazy. We use a purifier but after reading the CR we turn off the ozone function and it still helps. Things were better until Sunday when I started having same issues and last night went to my in laws to sleep (hubby out of town). I thought maybe it was the A/C again but as today has progressed I think I am teetering on the POTShole....teetering for days actually but it is TOO crowded down there, so I am trying to manage above ground. It has been a recliner day for me as well!

Emily, it is so good of you to write and share how you are doing. I know this takes a lot out of you. Just know we underestand you are doing what you need to be doing right now to get better. Pop in when you are ready!

[Ernie]

Sweet Emily,

I will do my best to explain how I do it. Part of it is cultural differences. We learn from childhood to be direct and to the point but I am at one end of the spectre even in my culture.

Here how it goes

1- I read the post

2- I make a synthesis of the question or problem

3- I think about the answer, sometimes for a few hours before I answer

4- When I feel I am ready to write I go straight to the point (I don't really know how to "season" my answers)

I have the cognitive problems as well. Sometimes just thinking about something drains me. I find talking to my friend on the phone tiring so I have to limit my talking and thinking time. Other times I am too out of it to watch TV so I just lay on the couch for an hour or two until I have a little bit of energy.

When I was going to university I had to read for 1 hour, sleep for 30 minutes, study 1 hour, sleep 30 minutes, study 1 hour and rest for the rest of the day.

Ernie

[ethansmom]

Emily,

It is so nice to see you posting again! Like you, I have completely slacked off on offering support and answering posts around here- but I am always lurking and reading when I get the chance, at least once each day. I feel terrible, but this pregnancy (though not aggravating my POTS symptoms) has completely drained me to the point that I am just barely plugging along and chasing after Ethan. Or waddling, whatever you want to call it Anyway, I am sure that you never anticipated all that you've gone through, and I commend you for coming through with such a positive attitude. Each day will get you closer to where you were before, and hopefully even better with that darn GB gone!! I wish you the best and really hope that you continue to perk up a little at a time. Take care- I miss chatting with you

[Gena]

Emily,

I think we all understand that we don't always have the energy to read and post every day, so please never feel guilty for that! I think there's an understanding around here on DINET that we may not always be able to respond, but it doesn't mean that we're not keeping someone in our thoughts and prayers or wishing them well. I feel that we all know this deep down. (I think you're just letting that Jewish guilt get the best of you! ) I get that deep sense of guilt a lot too, and i'm not Jewish. I guess it's just because we want people to know we care about them.

Well, I am sooo glad to hear your'e making progress each day. Like Geneva says, when you start signing off on every post that you're going to eat something, then we'll know that we have you back 100%!

Keep resting and building your strength!

Gena

[Guest tearose]

Hi emily!

Good to see you are feeling a smidge better!

Keep taking those small steps!

best regards, tearose

[calypso]

Emily,

What are you taking medwise right now? Are you taking a beta blocker or an antidepressant or anything? Some of what you're feeling could be some side effects of meds, or of course they could just be general oddities that go along with being chronically ill. (Probably the latter, but wouldn't it be nice to attribute them to something actually fixable?!)

I get a lot of what you're feeling on a regular basis. Especially the overstimulated/can't focus feelings and the panicky/too much adrenaline feelings. I think you're probably doing a good job of not overdoing it. But if it were me, I would try to push myself VERY slowly a little bit more ... maybe try a walk around the block instead of the mailbox. And don't do it in the sun! Wait for an overcast day or do it as the sun is setting so the bright light doesn't bother you. Plus probably less traffic then too. Ask someone to go with you. I know you have to balance rest with pushing yourself, but from my experience, the less I do, the worse I get.

Also, you don't have to sit in the sun directly to be outside -- do you have an umbrella or a shady tree? Or again, try sitting outside in the evening.

I am so frustrated lately with so many here in POTS holes and I can't help anyone, let alone myself! Just know we're all here if you need to vent. I agree that you may feel better in a couple more months. Surgeries take a lot out of people who don't have underlying conditions, let alone people like us who are already disaster areas.

Take care,

Amy

[corina]

Hi Emily,

very brief today, just wanted to say hi, we don't forget you!!!!!!!!!!!

Corina

[Sunfish]

emily & others -

i'm new on here, although not to autonomic craziness land, and just wanted to say that i can TOTALLY relate. i had my GB out just after you did...it was right about then that i found that discussion boards on here...go figure that i'd bene to the main DINET site multiple times but not realized there was a forum??!!

after holding my own, relatively speaking, for awhile, my system totally wacked out again this winter and when i first logged on and read posts of your post-surgery trials i was both sorry but also comforted to see that it wasn't only me who didn't go so hot post-surgery. sparing the details, my body totally flipped out post-surgery and it's still been quite the long road that is moving slower than i'd like. plus, while my GB too needed to go, there are other issues that didn't resolve as much as we'd hoped post-surgery.

my biggest reason for not posting the past few months is a lot of what you were mentioning...my being afraid that i won't be able to "keep up" at all as i like to do so...i'm so much of an "all or nothing" gal by nature. and then if i'm honest i've also been beating myself up a bit about not staying as involved in the dysautonomia world always so that i would have had more support when - pardon the expression - the **** hit the fan this year. i hate the idea of my showing up only when i'm in a bad place...

so thanks. your post made me realize that i need to get over myself and jump in. and just do what i can with that, trying to scrap my compulsion to read & respond to every single thing. the funny thing is that no one knows me at all but i feel like i know everyone already quite well as i've been reading semi-regularly recently!

hang in there & keep on keepin on...

melissa

[Merrill]

Hey, Melissa, glad you jumped in! Sometimes you just gotta take the plunge. Any other lurkers out there? Reveal yourselves!

Emily--you just give what you got and we give what we got and that is that. Like this funky syndrome, everything changes day to day. No worries, no guilt. S'OK?

Hope today was a good one for you ... and for everyone.

m

[tammyokc]

Hi Emily!! I know how you feel about keeping up with everyone and trying to read but can't respond cause you're too sick.

I feel so much like you and I do wonder if my ambien and being on it so long causes some of my problems. Do you ever think your body is so use to it all night that all day it is withdrawing from it? Are you going to try the new sleep med that comes out today? Lunesta by Sepracor. I see my sleep guy on Friday and I'm sure if it's in, I'm gonna try it. Anyway, I feel so much better after I take my ambien, I feel calmer, my pain stops a little, I can think better and my personality returns, so I wonder if I've screwed up my POTS even more by taking ambien for years. Your thoughts?

Also did you say you take Xanax during your most adrenalic times? If so do you take Xanax or the generic Alprozolam? I tried the generic and am still trying to steady myself after .5 mg. Don't know if I should pay a fortune to try the name brand.

Thinking of you my friend!!!