Drove home from appt. & don't remember

[Guest Julia59]

Today I went for my fitting for the cervico-thoracic vest. I have been having a worsening of symptoms---and now getting more headaches. I am near my period, which always makes things worse. Over all weakness---and legs getting weaker. Today I took my time getting home from my appointment. I finally reached the area very close to my home, and I don't remember getting there.

I must have driven OK---I assume. It's like I was on auto-pilot. I tried really hard to remember, but I couldn't. I feel like my whole body is falling apart. The right side of my lungs still feels congested, but it's not as bad as it was. My husband said i'm coughing at night and deep snoring. I am also having slower gut motility---making it more difficult to swallow. God, I sound like an idiot----how could all this be going on at once---who would ever believe it?

And to top it all of---I feel myself getting fatter and fatter. I'm ready to give up.

I'm thinking about going back to Ken Davis---a phychologist in my area. I'm getting too depressed to handle this on my own. My body feels like it's been hit by a bus. This problem with my memory has been getting worse. I have been in denial-----thinking it can't be true. I must edit my posts 5 to 10 times for mis-spelled words---or letters just missing----whatever. There is just way too much going on to express it into words. I'm to the point of feeling like i'm just existing.

I went to Kroger today to pick up only five items before my appointment. Goodness, you would have thought I could handle that. I was wiped out by the time I got to the register.

I just can't register all this right now---I need help----

I'll be alright---just venting----but I better get over to see Ken Davis. I just can't handle this on my own anymore. I should be hearing from SSDI soon----and i'm afraid it will be bad news. They were only waiting for Dr. Bolognese's to handle his portion of the paper work. Regina called from TCI and said they would call SSDI and fax over the paperwork. This is not easy on my husband eaither.

WEll I should go off to bed----maybe i'll watch Conan on TV to cheer me up before snoozing.

Thanks for letting me vent.

Julie :0)

[blackwolf]

Dear Julie,

'Tis the season to vent.

As to driving home and not remembering, boy have I done that, not reciently though I don't drive anymore. How about forgetting a whole afternoon. I made 17 blocks for a afghan and don't remember doing them (scary isn't it).

And editing posts, I read and reread about 5 times before I feel ready to post so don't feel bad. When I was in college, I was the best speller around now I have to be carefull what I choose to say so I can spell it.

I'm glad you have someone to talk to, there aren't any good shrinks around here for chronic illnesses and I haven't found anyone else to talk to that even comes close to understanding what our lives are like.

About the SSDI, hang in there. It is a nasty uphill battle, but well worth it in the end.

Please remember we are here for you.

Blackwolf

[mindylee1]

Dear Julie,

So sorry you are having such a rough time. I sure can relate to the memory loss. My short term memory is just horrible. I can't remember if I took my meds a minute ago or not. As far as the driving. I don't drive anymore because the same thing was happening to me. I would just space out and somehow made it home. Please take care of yourself. I know how hard it can be to rely on someone else to get you somewhere but maybe it would be best if you find a ride for a bit. I know thats the most frustrating part.

I myself have been very depressed lately. I have really been withdrawing from everyone. I take my phone off the hook because I just don't want to talk. I comend you for going to see someone... I think I need to do the same.

Remember we are always hear to listen and help

hang in there

mindy

[Guest tearose]

Seems like you've had your share of time in the "fix it" shop Julie! Wish they knew how to help. I'm glad you keep getting out there and looking to make things better!

I know what it is like to "loose time" and it IS frustrating to realize that it happened! I wish I could share my experiences with you...I'm sure I can't even remember them all. The driving and zoning out is familiar, I've had to pull over while driving and ask myself where I was going!

When this happens to me, I take it as a warning sign that I have to slow down and rest.

Between your lungs, your ssdi application and hormones, you have earned the right to feel tired and wiped out! take of yourself, ask for help when you need it, tearose

[Eillyre]

Hi Julia!

Go right ahead and vent as long as you need to. You've got crazy things going on with you and need to let your feelings and concerns out -- we've all done it (and feel so much better for it, too! )!

Sorry to hear about the trouble you're experiencing. I have to admit, the cognitive problems I've encountered are some of the most frustrating. I hated finding myself in some part of NYC, wondering how I got there, what I was doing there, and where I was supposed to go next -- very scary! I ended up in a dark, creepy part of Brooklyn one night because of it! I've joined the ranks of e-mail multi-check-ers, too; never less than 3 times -- quality assurance guaranteed!

I've just been weathering a rough patch myself, especially since it's Nutcracker season. My symptoms have been getting worse and worse without much to combat the decline. I'm out of shape and know my figure has suffered from lack of exercise -- I have not felt very pretty in a long while! Sometimes I'll wonder for a moment, "Am I just lazy? Am I just imagining all of these bizarre problems? Am I nuts???" It lasts for only a moment, though, because I know it's all real -- I'm not creative enough to make up all these weird symptoms!! I'm resurfacing again, and being more forgiving of myself and my limitations. I'll get back to more normal life eventually; just have to do what I can for the moment and enjoy each little victory.

I wish I lived closer to you and Mindy so I could try to help out (wouldn't that make scene?! ). Stay strong, dearies, and don't give in! Make sure you take special care of yourselves (when I was going through a "not-answering-the-phone" stage, or any other emotionally-distressed time, I tended to neglect my salt/potassium/fluids regimen -- hope you're better disciplined than me!). Pull on the fuzzy slippers, don the soft cozy crocheted blanket, hit the comforting tea, and, sure, catch an episode of Conan if it helps!

Keep us posted!

With love, prayers, and a very huge hug,

Angela

P.S -- By the way, what's SSDI? Sorry, newbie ignorance strikes again!

[geneva]

Wow Julia! You have so much going on that it is easy to understand how overwhelmed you are feeling. I applaud you for recognizing that reconnecting with Ken is what you need to do to get through this partially difficult time. I wish I had some words of wisdom, but I don't. I can share that short term memory is not my strength either. I was just having this conversation with family last night about how I can remember numbers (household budget, telephone numbers etc) but concepts, conversations, movies, books are another story. Maybe half my brain is still working!

I hope you will find some peace soon . Getting a positive answer on SSDI will help. I will keep thinking positive thoughts for you.

(Angela, SSDI is social security disability insurance.

Tearose, have you heard back on yours?)

[yogini]

Julie,

I just wanted to say feel better and take care of yourself. You have so much going on, so I can only imagine how overwhelming it must be. I think going to see a psychologist is a great idea, because a professional and objective person could probably really help you through this.

Also, maybe you could try taking it easy for a few days or weeks to let yourself heal. Things like going to the grocery store don't seem like a big deal, but they add up and take their toll on us POTS patients. I'll bet you start to feel a bit better after the lung congestion calms down too.

And we are all friends here, so don't worry about spelling!!

Hang in there,

Rita

[Ernie]

Hi Julia,

Sorry you are having such a bad time. I hope you get the soluction soon!

You can have been driving your car on automatism. Many people do that and it is normal. I would not worry about it.

Ernie

[Guest tearose]

Hi again Julie, did you get any good sleep time? What stage are you in the SSDI process? I had my hearing and the judge asked the lawyer to get more information. (Geneva asked if I heard anything yet...I haven't.) The lawyer told me earlier this week that he was in the final stages of his writings to the judge. The hold up on my part is that I may have pushed too hard and long and not have had a "failed work attempt". The fact that by pushing hard I tore my pelvic muscles away from their supports doesn't seem to matter to the judge says my lawyer...he needs to explain the "work accommodations" to the judge. I am amazed by this process and pray that the judge sees what my intentions were and why I pushed so hard. I promise to fill you in when I hear, but keep on trying to answer all SSDI questions Julie...we can't loose hope!

tearose

[purplefocus]

Julie,

I hope you are feeling better. About the forgetting, I know its scary. I have done that also. Stay positive about the SSDI, it is a hard battle but like someone else said in the end it makes it all alrights. You have the right to vent...........so vent away. We all do it here and there and that is one thing we are here for. I am sorry you are having so many problems at one time though, I have a big problem with being overwhelmed by just too many dirty dishes in the sink so I understand. Don't you just wish people around you could really understand what is going on inside. I don't wish this on anyone but I do wish sometimes some of the folks around me could be in my shoes just for a few hours and then they would understand so much better. Oooops sorry I got off...............hugs and good wishes coming your way.

Paige

[Guest Julia59]

Thanks so very much for all the support you all show!

Tearose---SSDI is still processing the medical portion of my claim, however, only one doctor hasn't sent in their portion of the paperwork. I called that doctor, and they were going to call SSDI that day and fax anything needed to process. You can check you claim status on line in Ohio.

When I filed for SSDI, I tried to give them as much information as I could from each doctor. I think it speeds up the process a little. When I talk with anyone from SSDI, I feel like i'm on trial for filing. I don't think I will understand why I wouldn't get it with as much going on with my healh-------with the POTS problems, cervical spine stenosis, chiari, cervical/cranial instability, retroflex odontoid-(aka tilted C1 putting additional pressure on brain stem) IBS, and EDS. All this is just too much----and to add a job in the picture, even part time---I don't even want to think of what could happen.

I don't know what else they would want to prove I can't work at this time. My time on the computer has to be limited---due to the stress from typing or holding my head in certain positions. I couldn't imagine working at a desk all day---and obviously I wouldn't be able to do anything physical. Stress alone sends me into a tail spin. Any time I putt around the house and do a few chores, i'll pay, but at least I can rest between. A job does not allow that.

There are so many with such severe POTS they can't even walk---and they still have trouble getting SSDI. I'm fortunate I can walk atleast----however----not for long. My POTS is most likely connected to long standing cervical spine problems---and the chiari. That is what we are finding out from all this testing i'm going through. However, permanent damage has probably been done, and probably not able to be reversed. I'm rambling on too much.......

Thanks again for all your support!

Julie :0)

[DancingLight]

julie,

just wanted to send good thoughts...why aren't they working?? that was supposed to be funny...oops. i mean, i keep writing that to you over and over again...how come it's not fixing things? he-he. i thought i had more powers! i guess i'm not harry potter...hey, harry, where are you when we need you? we need you to fix julie's body up right quick! and the rest of us too, while you're at it.

oh, man, have i done that taking my meds and don't remember two seconds later (by the way, did you get that pill holder?). okay, okay, i'm going for laughs tonight. is it working? i hope so!

as for taking the phone off of the hook? i have sooo been there. ugh! i almost did it tonight to my best friend. and then thought better of it. as for driving!? forget that. i'm a danger to myself and others!

anyway, i'm sorry that you are struggling so much julie. i am glad you felt that you could vent here...that is so good! it is hard to reach out sometimes, even here.

as for seeing the psychologist. like geneva said (was it geneva??? uh-oh memory loss)...i applaud you for recognizing that you can't handle this on your own. honestly, i've said this over and over again...i could not do this chronic illness thing without having counseling. it saves my life! especially b/c i really like to talk and need to talk things through A LOT. and i know you like to talk too julie! so, maybe it would be good. it is good to know you have a safe place to go every week for an hour. you know? and you can really vent! please don't beat yourself up about that...it is as much an emotional struggle every day as it is a physical struggle.

also, there was one more thing...shoot...what was it? hmmm...well, i don't know.

just that i'm thinking about you.

oh, the SSDI...i hope you and tearose both hear soon. the process is such a pain! ugh! but, it is worth the fight, i agree.

goonight! gotta hit the hay.

emily

[Guest Mary from OH]

I can totally relate about the car being on autopilot!! It IS scarey!! Also, sometimes my car will be on autopilot and take me to the wrong place!!! That's when I get really upset!! Or sometimes, I look up and WOW!! I've turned onto the wrong side of the road!! Whoops!! I'm glad there wasn't another car there!! LOL!!

Anyhow, I'm glad it's not just me!!!

Take care of yourself and try to relax!! (at least that's what everyone's always telling me!!)

[Merrill]

Hi, Julie. How are you feeling today? Better, I hope! I've been meaning to post a reply ... first, I too want to just say how much I relate to that auto-pilot thing ... Quite frequently I'll be driving along and then have ZERO recollection of where I've been or how I got where I am. It's a very strange sensation, and yet it's getting more familiar all the time! I also have a tendency to sort of mentally black out--find myself in what should be familiar places or on familiar streets and I feel as if I have no idea where I am. When I become conscious of that, I just keep going, trusting that something in my brain will switch back on and I'll find my way. Better to be lost driving than walking! At least we're sitting down, huh?

Anyway, I hope you're doing a wee bit better ... at least it's Saturday!

merrill