Ssd Approved

[SarahA33]

Hi guys,

I'm not sure if I've mentioned in the past that I applied for Social Security Disability in June. I found out on Thursday that I was approved. My conditions listed were Hyperadrenergic POTS, Chronic Migraine and Seizure Disorder.

I went through an attorney the first time I applied, so I hadn't been denied previously. My attorney said he's never seen a case go through as quickly as mine did. I finally listened to my doctors and stopped fighting them to work. I would work so hard to prove to myself that I could do it and then I'd run into a brick wall. They finally told me enough is enough. I have a hard time accepting how sick I really am i guess.

I was extremely relieved that this process was over, but at the same time I couldnt help but feel like I was losing such a huge part of my life. I was looking into Master's Programs and worked so hard to follow my "plan" and that became a major part of my identity. I know how lucky I am that I was approved, and every day that i can't seem to get out of bed or stand for more than 2 minutes I'm reminded how much I need this. Waking up on the floor after my first seizure in my office with 15 people standing there is something that I can't go through ever again.

Just wanted to update you guys that I no longer am going to attempt to work and that I've finally admitted I've worn myself down. I was told years ago to apply, but that stubborn Type A in me wouldnt listen. Anyway, I have a review in a year so we will see where things are then. Thank you all for your support. -Sarah

[BeforeTheMorning]

HI,

I know how hard it can be to eventually admit that you just can't do something. I'm glad you managed to get your ssd so quickly though.

Best Wishes,

Lyla

[Becia]

Yay for getting approved! I'm still in the fighting stages, but yeah, I'm doing the same process: admitting I can't work anymore, and not fighting it.

The hardest thing I had to do this week, was contact my professor and school to notify them I am dropping out. I've tried everything imaginable, and it just wasn't working with my body anymore. Really has taken a toll on my mind, but in the end, this week when I've been ill enough I couldn't start my ivs alone, it was a reminder that it was the right decision. Instead of freaking about a report due, I need that energy to safely maneuver my day.

I did get my state disability. ( ohio has this thing for $115 a month that after a year I qualified), and now that info has been turned over, I'm praying that my federal will come through soon too.

I'm much lik my mother, I don't want to admit defeat, but right now I'm admitting I'm not strong enough to do this now.

[MomtoGiuliana]

I'm glad you got approved. I am sure it is hard. Disability does not have to be forever--many people go on it temporarily or longer term--but just as long as they need it. Hopefully this will allow you to focus your limited energy on getting better.

[gjensen]

Congratulations. This should enable you to pace yourself, and may make a difference for you.

I can relate with the mixed feelings. I was recently approved. In one sense, I was relieved. In another sense, the reality of it all settled in.

It certainly does not have to be a permanent solution. That is how I am looking at it, but I will be positive before I give the benefit up.

I was also approved on the first try.

[SarahA33]

Lyla, Thanks for support.

Becia, Hang in there!! Not having control over aspects of your life is incredibly frustrating, especially if you're anything like me who is a control freak. I know what youre going through..

Gjenson, Thank you for thr advice. I'm hoping also that this will help me pace myself as well. I clearly have no idea how to do that. Patience with myself was never something I learned. Since you were recently approved, It sounds like you understand the mixed emotions. I do know I truly need this, but some days it doesnt make it easier to accept. Good luck to you, and you like said this doesnt have to be a permanent thing. The problem I seem to have is that I seem to do better (sort of) and then I get knocked down the harder I try. Take care - Sarah

Katherine, Thank you. The problem is that I have a ton of energy but am too sick to do anything with it. I I need a hobby that involves taking my mind off of things.

[corina]

Sarah, I always feel so torn in between congratulating and feeling sorry. Congratulating should win I'm told by ratio but my heart feels sad for all you are loosing. I honestly hope, like Katherine mentions, concentrating on getting better will help you. Like your's my head is always racing and full of ideas. Most things I can't do at all so I need a little more realism which I'm working on! So congrats to you and hoping you will get a much better quality of life now!

[SarahA33]

Hi Corina

I agree that there is a fine line between saying "Congratulations" and "That really stinks". I think it's a mixture of both. As I've mentioned in my posts before none of us were ever given a choice with obtaining our illnesses.. we just learn to deal with them. (Most days, anyway). I'm really going to put in an effort to focus on myself for a change. I hope you are doing alright, when i see your name come up I always wonder how things are progressing for you. You all are certainly in my thoughts. Thanks for the kind words, Sarah

[corina]

Unfortunately I'm not making much progress. I now and then take a few steps forward and then fall back again. My neuro doesn't have the answers but does his best to help me on my way back to my former baseline. It seems I'm struggling with low heart rates since a few months which we are looking at more closely at the moment.

What I try to do for me to keep me happy is making pictures! I took photography classes a few years back and now am totally addicted to it. It's SO much fun to think of a new project and how to take it on! Since last year's surgery I haven't been able to attend classes and couldn't go out much but I made lots of pics at home which was a lot of fun too! On lesser days I love coloring, reading and playing word games. I chat with my friends who live all around the world and love volunteering for DINET! I also run a facebook group where I try to help my (mostly) Dutch POTSpals find answers.

I hope you will be able to find what makes YOU happy! It makes your days lighter and brighter and gives you something to talk and think about other than health issues! I LOVE your quote btw!

[looneymom]

Happy for you Sara but I understand the sadness also. Hopefully this will not be forever.

[writerlymom]

Sarah, this is a good thing. You'll find your passion in a new path, I have no doubt about that. Giant hug!

[xRobin]

Hi Sarah, I am on SSDI as well and I understand the mixed blessing. It's horrible to have an illness that impacts life expectations so devastatingly, but the small income has helped me, well, survive. And I'm grateful for it.

You sound like you have a very healthy attitude for everything you've been through. I think the best we can do is realize that like you said we didn't ask to be ill, it's something that happened to us, but it's not who we are. Sometimes it's hard to hang out to our 'selves' when we're really ill but it's so important. I hope you find a little hobby or something to make you feel peaceful. I get migraines too and would love to read your blog.

[SarahA33]

Corina, I'm sorry things are difficult for you. Your routine sounds somewhat like mine -2 steps forward and 2 steps back sometimes. I think I bring some of it upon myself, on a good day I'll push myself too hard and then pay for it for days later. I just can't help it -- I suppose this is what learning to pace myself is all about. I'm glad your neuro is helpful for you. Did I read in a different post he contacted Grubb? Anything useful he could offer? I hope so...you deserve relief. youve gone through a lot. Do you have any plans to come back to the states at all to see any of the dysautonomia doc's?Travel has to be awful

[SarahA33]

Hi Rachel, promise I'll write you back as soon as I can. On top of everything my mom ended up having to have emergency eye surgery due to the pressure being so extremely high she was days away from losing her left eye vision completely. Thanks for being so kind as usual --and I hope this wont be forever either. One day at a time. I hope you andTyler are doing well. I bet he's enjoying having you home with him for the summer.You must be an encylopedia by now. ;)Youve always got great input and research. Talk soon!

Writerlymom, Thank you for your well wishes. This is a good thing, I hope I'm not complaining. Learning to resctructure my life, even if temporarily,isn't easy for me. I'll figure it out and learn to live with it, it'll just take me some time

Hi Robin, I appreciate you sharing that with me. The finanial aspet of the SSD is a tremendously huge blessing and hopefully I;ll get to see my fiance more often as he'll have to work less overtime. Ive always thought that its easier to be the sick person than the loved ones around you. I try to have a healthy attitude, my bad moods tend to spike when my adrenaline goes into overdrive. When my migraine blog is up and finished I promise to let you know, if your ever in Buffalo feel free to come to the migraine meetings. I organize dotors, chiro's, drug rep's, PTs, Massage therapists to come in to speak and answer patientent questions, new research and talk with the attendees about their migraines. I love it but at the same time I feel sad when I hear someone's story,we all certainly have our share of battles.Sorry to hear about your migraines as well..have they labeled or diagnosed them?

[writerlymom]

Sarah- it didn't seem like you were complaining at all. You're pretty amazing!

[SarahA33]

Thank you for the very nice compliment I think with this diagnosis we all have developed somewhat of a thick skin and a different outlook on life. Getting sick changed my personality in some ways, mostly for the better .

[gjensen]

" None are as sensitive, as those that have been skinned alive."

I had my soft spots along the way. A few in particular. I was aware of chronic illness, but the subject is in a new light now. I hope that I can become stable enough to contribute in some way. I have no idea how, but my experience has been that there will be no shortage of opportunities.

This illness has and is settling my ambition, and I am happy with that. It is tempering my pride, and cleaning away all that separated me from what matters the most. Much of what I was caught up in, was frankly, vain.

It is and has been a slow process. My brain thinks as it always has, but the body reminds me, and brings me back to reality. Over and again.

I want better than this, and I hope for better than this. It has not been all for nothing though. Some of what it has given me, I needed. Some of what it has taken away, I did not need.

It will be interesting to see how this process evolves. It is encouraging to see how so many here, respond so well. Some that suffer the most, are the most encouraging. Some that do not suffer it personally, still come to support those that do.

[imapumpkin]

congrats on getting approved! honestly, it's such a weight off your shoulders to not have to worry about getting denied and just have the process behind you. i totally get feeling relieved but also resisting the idea of it. i found that it was such a wonderful relief to be acknowledged that what we have is in fact disabling, but i worry of course that when i am able to reenter the work force i'll have to explain why i haven't been working, and who wants to hire a person with a chronic debilitating illness that flares up? I know its not legal for an interviewer to ask about those things, but i worry it will work against me.

the way i think of it is this is a temporary situation and doesn't mean i'll be "disabled" forever.

i also got approved on the first application.

[SarahA33]

Gjenson,

I also understand the body reminding the brain that life can't be as it was before. I coached competitive cheerleading and went to a competition a few months back and couldnt walk up the bleacher stairs. The women I coached with for years got me a pass to sit to watch them practice before they went on and I got to watch from the side of the mats while they performed ..It was just another reminder of a happiness that was taken away from me.

But, now is my time to re-evaluate what will make me happy now, as of today..not before. We can't go back and I've been somewhat stuck on not wanting to let go. The fear of the unknown is scary but this is a new chapter

[SarahA33]

Pumpkin,

I think what I'm learning through this process is that the harder I push myself, like I used to be able to, is no longer in the cards for me. In the scheme of things, I don't know why this happened to me but I'm done questioning it. Things worse than this happen every day and I've started reminding myself of that. I do hope this is temporary, because it's tremendously difficult in every aspect, but right now I'm working on taking it one day at a time. - Sarah