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hollie

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Everything posted by hollie

  1. 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.
  2. 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 some
  3. 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 photogr
  4. 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
  5. 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
  6. 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'
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. Good news... I forgot to say that I too have been waiting since the 7th for mine from Mayo!
  13. 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
  14. 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 sta
  15. 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 i
  16. I also am ALWAYS tired. I try to get to sleep at 10-11 (can't do earlier - no matter how tired I am). It seems the the more tired I actually am, the harder it is to fall asleep! I get up about 7:30 to get the kids off to school, but it takes about a half hour to get out of bed. I've been having problems waking in the middle of the night and taking 1-2 hours to fall back asleep. Now this is where I differ from most POTSies... Once I'm out of bed, I'm ok. I actually am most alert and productive right away in the morning. ??? I take my morning meds right away. Once I take a shower though... forge
  17. Is it possible for one family member to have one form and another family member have another? My sister fits almost all VEDS symptoms, I have some of those, but am very hypermoble, which usually isn't associated...
  18. Well said!! Here's to all the loved ones that sacrafice so much to help us! We love you!!!
  19. Does EDS have to heavily active in families? I don't know if I have many (if any) family members with signs (or few signs). Can they just carry it?
  20. I had some blood tests last week and they had to put an IV in my arm. It took 3 times before they got it in. (I too have NEVER had needle/blood POTSY issues). By the third one, I was feeling REALLY POSTY and ready to pass out!! Luckally, I was sitting in a reclining chair. They put my feet up, head down and soon I was feelling better. The tech said that messing around with veins triggers your nervous system (including ANS). So maybe when you cut your finger, it was enough to send your ANS into overdrive? Just my thought... Hollie
  21. I'm pretty sure I have EDS too. I've thought this for a while, but was in the same boat as firewatcher. I figured "what difference does it make." I had no idea it can mess with your insides (heart, hernias) and such too. I have a 9/9 score on the Beighton scale. I checked on the other normal ranges and I am over those too. I have other symptoms too... Yet another problem to bring up to the doc!! Hollie
  22. I think there are SO many of us that feel the same way. Most of my friends have gone their own ways too. For a while, I tried to convince them of how sick I am. I think that just pushed them farther away. I've just recently come to the conclussion to be happy for what I do have and try not to dwell on what I don't. I would get so down, even I didn't want to be around me! It stinks... I know. It's hard... I know that too. Trust me, I still struggle daily with what I used to do and who I did it with. I miss my friends. I miss my old life. I took for granted what my body could do back then. I thi
  23. That's the other thing that upset me... Last year when signing up for all this, I was told they would cover food, mileage and hotel bills plus some just for coming and doing the research. I haven't seen anything or heard anything more about it. I asked last year and no one knew anything about it. I finally got an answer from someone, but I had to do the digging. She said I had to wait until the "project" was over to make sure I kept coming back. This could be a few years. That's OK... I understand that... In the begining, they just made it sound like I would get paid right away. This year, I
  24. I have what's called factor V Lieden. It was found in me because about 7 years ago (pre-POTS) my grandfather had an aneurism, then a small stroke. He was discovered having it and his docs recomended his family all be tested for this gene mutation (expecially the woman because of estrogen birth control and supplements). My mom was found to have it and me too, but no one else in the family. Since then, my mom also had a clot in her leg twice. Basically, I'm about 8 times more likely to have blood clots than someone without this mutation. It's NOT associated with POTS. Thanks for the kind words t
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