hollie

After battling for over 2 1/2 years, my social security disability finally went through! Because of my health, I have not worked a full time job in over three years and my finances were bleak, especially after my husband got laid of from his job in April. I found out yesterday and have been smiling ever since! I can't wait to pay a house payment ON TIME! For those of you out there still fighting... don't give up! It's a long road, but you'll never know unless you try.

I'm having MAJOR issues with this! I think it gets worse by the day! WAIT.... what were we talking about... Oh, yeah... (This happens to me all... the... time...) I don't know how many times I'm getting ready to walk out the door and I set something by the door so I wont forget it. Then halfway to my destination (or after I get there), I realize that I forgot the "whatever" by the door. Literally, I don't think I've made it anywhere in 6 months (at least) without forgetting something. Even simple things, like calling the dr to make an appointment, or refilling my meds, or paying bills are sometimes days or even weeks late b/c I forget day after day... I have notes and lists everywhere - but don't seem to do any good... I leave words out of sentences. I forget names of people I've known all my life. hollie

I hear that... that's a major problem for me as well. My husband works long hours (mostly because I'm unable to work) and I have very few friends that live close. So I find myself bored and lonely quite often! I tend to jump around in the things I do - a lot! I'll do one thing (and only one thing) for like 2-3 weeks, then switch to something new and come back to it again later... read, I've been writing a novel, knit, draw, etc... I think the funnest things I do is blog almost every day ( www.new2babycakes.blogspot.com ) Here, I write about almost everything from family to politics to photography to crazy, fun thoughts to POTS - it's kinda therapeutic. I've found a few other blogs that I follow and/or do contests for. It's something new every day so it's not so tedious. Good luck filling the time... Hollie

Thanks girls! You said pretty much what my doc did today. He saw how down I was and have been for a while. After talking with him for about 45 min, I felt better - even though I cried thru most of the appointment. We both realized that I have been feeling like I have to PROVE my illness to everyone, including myself. He reasured me that it IS proven to me and to him... and that's all that counts... everyone else can take a hike. I don't need to prove anything to anyone! I just need to keep telling myself that!! The problem is that I DO have to prove it to the disability people... That's what's going to get me! I have been doing really well with accepting all this and living my adjusted life, that is until the last few weeks. I just have to accept setbacks as well... even tho they REALLY stink! I have been dealing with a lawyer since day one (which was just over a year after I started getting really sick). I heard what a pain and a stuggle it all is and didn't want to go it alone. Hopefully they can get me thru all this! I just thought it would be over by now... 10 months later... better roll up my sleeves and get my fighting gloves on! Hollie PS... He also suggested I talk to more people with POTS and similar problems because I need to have a better community of people to support me more. I told him I had found a (THIS) site with a great supportive following (over a year and a half ago), but I haven't posted for a while. He suggested I post more to help me talk thru all this. So don't be suprised if you see me lurking more here and there!

Hi all. Haven't posted in a while as I've been doing pretty well... at least as well as anyone can with this crap. I'm just having a hard week and needed to vent. Last week I FINALLY got a responce to my disbility claim (after 9 months of paper work and phone calls). They denied my case, which I heard is usual for the first go round. I understand that and expected it. But deep down, I had hoped the fight would be over soon. It made me feel EXTREMELY worthless! Thanksgiving came and went. I felt like **** the whole day and couldn't help as much as I wanted... more worthlessness! Friday I got a call that my grandma had been diagnosed with breast cancer! My mom went through it about two and a half years ago, so I now know what to expect. The problem is she's 85 and really fradgile. We all know she will probably not make it through any kind of treatment. To add to the day, my sister and I got into a fight and haven't talked since (we talk a couple times a day usually). Today, I've been having the "drunk" feeling all day... more than usual... my heart is doing more jumps and skips than usual... my lungs feel tight too... sharp pain in my lower right lung for a couple weeks. Long story short (ok, maybe not so short), I feel so down. I'm sick of this! I'm sick of not being understood... I'm sick of trying to please everyone and pleasing no one... I'm sick of not being able to provide for my family... I'm sick of feeling sorry for myself... I'm sick of not being happy... I'm sick of being sick... I see my doc tomorrow. But, you know how it goes... I'll get there and I'll feel fine at the time and he'll see nothing wrong with me... UGH! I just want some help - is that too much to ask? Hollie

It took me a year to realize that I could no longer work enough hours to pay the bills. I tried and tried, but failed each time. I finally put my pride aside and talked to a lawyer. I've heard if you put in a claim, 95% of them are declined right off the bat just so they can weed out the people that aren't going to fight for it. I didn't even have the energy to fight the SS dept. so went straight to the lawyer. You can get up to 18 months in back pay, but you can only be making so much ($400/mo). I don't know how they expect anyone to live on that!! Anyway, if you think you want to file, don't wait like I did! Do it now. Get it started, cuz yes, it is a long process. I started my claim in March of this year and I've been working on it since. The last I heard it would still be 3-5 months before I will know anything and that was about 3 weeks ago. I think I have a pretty good shot, but who knows! If declined, I will press on because I have no other options! Bottom line, don't wait! I waited too long and now my family is suffering because we can't pay the bills anymore. We've ran out of any extras we had and then some. I'm not trying to discourage you, but to incourage you to fight!!! No one will do it for you and you have every right to get help!! I think that's why I waited so long. I felt like I can do it, I'll get better, no one needs to help me!! Truth is... I did (DO) need help! Good luck! Hollie

Tell them the truth... Mine are 6 and 4 and I was dx a yr and a half ago. I've been up front since day one with them. You'd be suprised how understanding they can be. (not always, but most of the time) They don't need to know everything... heck... we don't even know everything about this stupid disease. But let them know what's going on and how to help you. Let them know that you'll be ok, but it will always be a part of you. hollie

I have to say I'm in the same boat as well... Ahoy Matie! MOST days I "magange". But it's still to the point I know I can not work or even do a lot of "every day" activities. That's not right - is it? I've been very frusterated lately... sorry I know that's no help to you. But just know you are not alone - sometimes that's help in itself! Here's to "managing"! CHEERS! *She chugs a gallon of gaterade!* Hollie

Yes, I'm thinking Dr. Grubb. I've heard such wonderful things about him. Problem is long term care. I've been seeing my dr here once a month for over a year. I would never be able to do that with him... I'm just so sick of being sick and am willing to try anything - I'm sure you all know... Hollie

OK... I haven't been on for a while. I've been trying not to focus on POTSY stuff (even though it hasn't worked on getting my mind off things). Anyway... I've been having a real hard time lately. I wont bore you with details cuz we've all heard them before. But I have to say that I've been feeling SO COMPLETELY USELESS in every way. I finally have made some friends that understand my crap - so that's good. But everything else is falling apart and I can't seem to do anything anymore. I can't seem to get out of my slump. Plus I'm getting so crabby at everyone all the time and more and more "out of it". My family is trying to convince me to go to Ohio. I've already seen another highly known dr and had no answers from him. I don't really see what going to Ohio would do for me. I feel like he would just blow me off like everyone else has. I need to know what luck others have had there... thoughts... feelings... experiences. Please PM me because it will probably not be allowed on the site (for legal reasons). Thanks in advance! Hollie

Brain fog has been killing me lately and only.... wait, what was I talking about??? .... oh yeah, only gotten worse!!! I can't think straight to save my life. I forget EVERYTHING! I stop mid-sentance and forget what I was even talking about. I could go on... Like I said, it has been getting worse for me this last year. I would love to get it taken care of, but how? I've tried everything! Hollie

Good news... I forgot to say that I too have been waiting since the 7th for mine from Mayo!

lolo, I've seen two ANS docs at Mayo. Without getting into too much detail (or into any trouble) I will just say don't be too disappointed. Some docs took much more time with me there than others and took me a lot more serious. I wouldn't worry too much that you're not getting to see exactly who you want. I would say to keep your mind open. You'll probably still be satisfied with who you get. At least it's an ANS specialist instead of a cardio or nuero or... Travel... I'm lucky enough to live about a half hour from Mayo and don't travel much. I think firewatcher had it right... a bedpan/toilet paper is probably what I would need most! Hollie

Florinef alone made my BP rise too. That's why I went to cardio doc to see what they thought of the whole thing. I feel more comfortable with this doc because he seems to tie everything together more and balance everything out more. As far as beta-blockers go... My heart slows at night too (as everyone's does). I have been told just to make sure I take it 4-6 hours before bed so that at bed time, it's gone through. I actually take my last dose at 3:00 in the afternoon and that seems to work for me. If I don't take the BB, my heart rate will shoot up 100 points (example from 60 to 160) just standing and crossing the room! (BP rises 20-30/10-15) Hollie

You sound EXACTLY like me... higher BP and higher HR on standing. I try to drink as much water as possible too, but I really don't push my salts too much because of the higher BP. I saw Fealey too, about a year ago. He only put me on Florenef alone and told me to drink lots. I now see a cardio elsewhere and am on metoprol (beta-blocker to keep the HR down). This will also make your BP fall, so am on Midodrine to balance it back up. It's taken about 8 months and am still not where I would like, but am getting there. I went off all meds for 4 days last week (for testing) and boy, did I pay for it! I soon was reminded how bad I was without meds! I don't know if it's just me, but it seems like the more I drink, the more thirsty I get. It seems like if I only have a couple of glasses a day, my mouth, eyes, nose, and lips are NOT dry but my body feels it. I don't feel thirsty either. Yet if I drink 100 oz a day, my mouth, eyes, nose, lips are SO dry I can't stand it. And I have this continual thirst, like I can't get enough. Anyone else feel this way? Hollie