POTSHOLE UPDATE

[Gena]

Laura and Merrill,

I was reading your post about the study on exercising and increasing blood volume, and the research done on the exercise bikes and likes, dislikes, features, etc. I think this would be great to post in a separate topic if you have the time or energy. You have good info here for others that may get lost in this thread. I am fascinated by the study and would like to learn more.

Thanks for sharing!

Gena

[Sunfish]

I know I'm going out on a limb here, but if any of you are in the know with old gospel music, there's a song that best describes where I'm at these days....

"Deep....WAY down

Deep...WAY down..."

much better with audio, but it works regardless. although i've been at worse spots in terms of what i consider the "POTS stuff" (OI, tachy, low BP, fatigue, mild nausea, dizzy, etc), I have so much else going on now (major GI issues, bladder that won't work, etc) that the overall scenario has me down pretty deep. BUT...I am doing anything & everything I can to try to get myself headed in an upward direction. Onward & upward one & all!!

:-)melissa

[Kite#7]

Hello all,

Just reading the posts here and though I've not seen the thread on exercise I would suspect that its because of the increase in lean muscle mass and bone density. it would also make sense that one should have more energy due more efficient use of bioenergetic systems and O2 absorption.

Cheers kite 7

Ps laura ,what part of Canada?

[blackwolf]

lost my grip... sliding backwards...

LOOK OUT BELOW... WIDE LOAD COMING THRU!!!!!!!!!!

had to give in to pain again, also had ssooo much trouble getting words from brain out my mouth, having trouble typing too

have electic shocks going down both arms

blackwolf

[danelle]

I am so deep in the POTS hole right now that I feel like I have fallen into an 100 yr old outhouse and it's not pleasant by any means down here if you know what I mean. No chance of getting out because it's too slippery. SOunds rather graphic but that is how I feel.

Persephone, DON"T give up. I am often in the place you are in. My kids keep me going-my youngest who is 17 just diagnosed with POTS as well. I can honestly say that I know exactly what you are feeling. If you want, please email me and we can share stories, or atleast update us on here. I am thinking about you as I am sure all the others here are too.

The posts on here are a riot, thanks for making me laugh.

Hugs,

Danelle

[corina]

I'm determined to get out and real soon. Tearose is right. Sometimes we need the darkness and loneliness to be able to think things over and figure things out. But I don't want to spend too much time on it because time is so valuable. Before you know it, another year is gone bye. So I think it's time for me to get out and enjoy my life again. And you know Persephone, how little things you can do, there's always something to enjoy. The sun shining, a beautiful flower or the thought of your friends here on PotsPlace. We're all thinking about eachother. That's what I love the most.

So, if you're ready, let's get out!!!

Corina

[Amy]

I think tea, cookies whatever you got would be great! I am eating for everyone. That is what I do to battle stress. Not good I know.

My grandson's 4 and 11 months were just here along with my two of my daughters that always is fun and BUSY!!! They live near by.

From the pots hole perspective they have been doing road repair on my street using some equipment to dig big big holes - well I am pretty sure they dug a pots hole for me and I fell in!

Since I am new to this particular way of thinking about my health it is hard to know what is pots and what is other things going on. Do any of you have a hard time telling what came first the chicken or the egg.

This week I found out I have a problem with my left eye. Went to the optomologist for a routine exam, expected to hear I am getting old eyes and need glasses. Instead, I was told I have blurred vision in my L eye, need a special test at the hospital (did it today) and then have to go see a nueroptomologist at University Hospital. They are concerned due to many nuerological problems I have had in the past year. I will keep whinning a little longer. Due to a dry cough, now had it for almost 6 weeks. They haved moved my lung scan up. I have it May 4th. They do their best to scare you half to death. My pulmonologist was alarmed!! I didn't even call the oncologist.

Anyway as for pots this is DIZZY AMY ! I am busy trying to get up everyday and go to work. I barely have time for work with all the doctors appointments!!

Hope everyone if the pots hole can get road repair to come and fill your hole so you can be on top of the hole!!

Tea and cookies to all of you!!

Amy

[steph37822]

oops

[persephone]

Thankyou SO much everyone, for your kind words. I know I say this everytime when you help pick up the pieces, but you guys really are my lifeline sometimes...no one else can even imagine what it's like to have this condition, can they? I really did feel so desperate at the weekend...like I had snapped and cracked all at once. I still feel totally gutted about being 500 miles away from all my university friends, and to be told on Friday that there's nothing they'll do for me here at home til I can see my specialist in London was just SO frustrating!

Things are a bit brighter and I have a bit more of my old bounce back. I've been sent home with a hospital bed--i.e- one that is electric and tilts. The cardiologist here has this theory that if I sleep at an incline of about 30 degrees HEAD UP tilt, then my body will become accustomed to not being flat, and my orthostatic tolerance will be higher.

I don't know if any of you guys have tried it. After 3 weeks in hospital, I'm not sure it's 100% effective. It seems a bit hit and miss. But then the other day I tried lying flat and sleeping....woah! I felt MUCH worse! When I woke up, I thought I'd had a stroke or something! I was trying to lift my head and even that made me pass out. I tried to call for a nurse but I couldn't speak. And I was whiter than ever... almost transparent! So...I'm still in the 'trial' stages with this tilting malarkey.

I'm walking with a stick instead of wheels....YAY!

anyway, I just wanted to give you all huge hugs and say THANKYOU so much everyone :-D AND SORRY FOR RANTING!

[morgan617]

So glad you are feeling better persephone, rant away! morgan

[dawn]

No doubt, down in the hole. Spend too much time alone. Need to work on mental hygiene!!!!!!!!!!

Went to walk in clinic this week with pain between my shoulder blades for 14 hours that wouldn't quit. Tried antacids and Zofran. EKG was OK. She thought gastitis, taking Prilosec twice a day and Mylanta.

Symptom after symptom. I want to get off this Merry Go Round.

Nausea, Panic, Sweating, Fatigue, Headache, Tachy, Insomnia. Went off my estrogen in October the hot flashes are the icing on the cake.

Dawn

[mom4cem]

O.k. I dug this post up and have come down to join you all. I just came back from a trip down South. Visited a different Dr. at the MVP/Autonomic Dysfunction Center in Ala. My usual physician(long story) is no longer with them and on her own but I could not see her, she was out ill. The other Dr. was o.k., not very compassionate but did say my symptoms were from Dysautonomia. These tachycardic episodes are bringing me down. My head feels like it will burst, my eyes hurt, my knees are like jello and the constant feeling of each heartbeat, sweating, chills, headache, flunctuating b/p and feeling every single internal sensation is making me nuts!! The episodes have been happening at least 3-4 times a month usually cycle related but todays was not. It made shopping at Costco a fast one. My rate was probably about 110-120, and did not go back down until 1hr later,,gradually. The after effects linger for days. Tomorrow is back to work and the kids back to school after Spring break.

I'm sitting down here with my water bottle and catching up on some magazine reading, got to at least be somewhat productive while I am down here. Maybe do my nails, there are a bit grungy from the last time I was digging myself out...lol...

No more whining,,have not any good cheese to go along with it!!

Sorry to see you all down here, but I will enjoy the company though..

[DancingLight]

Hello fellow friends in the hole!

As you all probably figured out by now, given my lack of posting, I'm still in deep...got my teaspoon here for diggin', and am drinking some tea from tearose.

I think it is a good idea to 'take a head count' every once in a while, as I find myself always worrying and wondering about everyone here. I find myself composing emails in my head when I am too tired to type! I keep thinking I'll be up for typing, but by then there are a zillion more new posts!

Geneva once told me to think about my 'favorite people' while I couldn't do anything but lie still and rest. I do this ALL of the time, and all I can say is that if thinking about you all could bring you out of the canyon, it would be done! You'd be running marathons by now!

I'm gonna miss someone, and if I do please, please don't think it means you're not special to me! Here's how it goes: How's Merrill doing today--is she feeling more like herself? Is Katherine taking her own advice? How are Corina's flowers? How are Morgan and Ernie holding on after there setbacks? Where's Godiedance these days--retirement or POTsy? Where are some of the folks we haven't seen for a while like Danish and JerseyGirl or GayleP? Did Radha find a way to get more comfort from her bathing? Is Steph getting into surgery mode? Yeah for Angela and so glad she's back! How's my Stacey today? Did Gena get some sleep? How is Nicole and Nicole'sMom? Is Geneva's A/C better now? Is Wareagle holding on? How are our pillars of POTSPlace, Michelle and Mighty? How's Tea today and what kind of cookies do we have today? Is Julie gonna get a break from all this junk? How are all of our Newbies like Sunfish and all the ones I haven't been able to welcome? How's Rita? How are Mary from OH and her dear Marissa? And blackwolf, any relief from the pain? How's calypso out in WI? What will briarrose educate us on next? And, I always miss Ethansmom!!! And, thanks to EM for this post!

So, as you can see, my mind is very, very busy. Sound familiar? Hey, Gena, what else is a gal to do on sleepless nights but think about everyone else here and hope they are actually sleeping!

Anyway, I'm changing my middle name to Patience. My doctor agrees this is a good decision. It's kind of wait and see right now...I don't have much news. I am still really struggling through each day and still need a LOT of help with everything. It's slow going, but there is progress...

I'm so sorry so many of you are down here in the hole with me. It can really wear me down not seeing much light these days!

Time for my nap...

I'm so grateful for all of you...I just can't imagine this journey without you!

Emily

[Ernie]

Hi Emily,

Thanks for asking.

I think I have emotionally recuperated from my last stay at the hospital and I am actively trying to find a speciaslit in the Montreal area. I spent most of the day on the phone "shopping" for one.

I have sent the forms to my insurance company and I will know within the next 2 weeks if they will pay for my electric wheelchair. I surely hope so.

Good night everyone,

Ernie

[Gena]

It's been countless days since I've had a good night's sleep (thanks for asking Emily). I officially fell back in the hole yesterday. My tachy's been really bad the past few days, and BP very low, anxiety high and exercise tolerance went completely out the window in the blink of an eye. Saw my Endo for a follow-up today and he wants me to try Florinef. He gave me a script for the lowest dosage. I really don't want to, but I have to get out of this hole some how.

My hubby and I are going on vacation this week, but I'm stressing just thinking about all of the stuff I have to do and stuff to pack. It will be nice to get away from my job for a while though. We plan to do some hiking and biking - I just hope I can get some sleep first!

We adopted a new dog (cockapoo) last week and he's awesome. Charlie is his name and he always has a smile and wagging tail, which really helps me physically and emotionally to get through all of this. My other dog, Wilson, is still adjusting to him, but they are playing together once in a while. Both of them of course are equally getting a lot of love and attention.

Thanks Emily for checking on everyone. It's hard to reach out to everyone, but I do think about everyone here and keep all of you in my prayers.

Take care,

I'll check in later when I get back from vacation. Hopefully I can take a vacation from this hole sometime soon!

Hugs,

Gena

[wareagle]

hello all..yes i am here too..thanks for asking Emily..i'm glad to see you're posting a little more these days. we should rename this place "pots valley"..i'm currently living on the corner of "fatigue street" and "queasy lane" ... every now and then I take a stroll in "tachy park"..at leaste my neighbors are nice!

oh, Gena...i was wondering if you'd tried clonodine yet? my brain's mush right now and i can't remember if you have or not. anyway..it's good for breaking up that sympathetic tone..i only take it at night..but it seems to have helped a little with my tachy and i haven't had any bad effects.

praying for better days ahead for us all...

[morgan617]

Don't even need eyes anymore as I am a dirt dweller. morgan

[MightyMouse]

Em, you're too sweet. I've got a doozy of a migraine at the moment...but finally started (ended?) my cycle after weeks of being late and bloated. Hoping this is the start of my body returning to "my normal" as my abnormal phase has been pretty unbearable.

I check the forum daily, but I haven't the energy to post or email most of the time. Thanks for being here. Bless my meds too.

Nina

[blackwolf]

morgan, you and i should bunk together, i'm still slippin'.

tried so hard at the special olympics, our church group served lunch to the participants, their families and the volunteers, it was a blast, we took our kids and some neighbor kids, they all had so much fun, plenty of leftover hot dogs to eat. not me, i swear! but since then i have been just surviving. trouble with everything, walking, talking, pain(thank goodness for TENS unit), nausea, "turkey trots", shaking, tired, sleeping alot.... on and on.

and just for fun, lightheaded and dizzy

and whoo-hoo, a ssdi review, am i ready to return to work, please....

nite all, and i think i need to stay away from the computer for a while, i'll miss you folks, but i must take a break from the screen. may "lurk, but not chat..

blessings on us all, in the hole or out.

blackwolf