I am so EMBARRASED!

[leelee88]

Kara.. I think you are just thinking ahead.. Try not to do that because it will only depress you more..A job would only make things worse on you and you could be jeopardizing your disibility.. Take a big breath and rethink all what you are saying...((((((((((hugs)))))))))))

Ronda

[Moonheart]

I was told you can try to work for a year without fear of losing disability. Also, you are allowed to earn up to $800 or so above your disability? Is that right?

[akrose]

Kara- I am in the same predicament as you are. I haveto fly from VA. to L.A. for the best urologist in the u.s. to do my cysto/urethrectomy. Stay in the hospital -UCLA for 1 wk, then at about $100 per night stay inthe hotel across from the hospital for 3 wks, then fly home. Thank the Lord that he is covered by my health insurance, but everything else I have to pay for. But because I am very sure that this will be the end of i.c. for me, I am very willing and ready to do it, and have saved and worked as hard as I can to do this. So just think about the life (a better one) you can have after this is over and the surgeon has repaired you. Just trying to support you, this is all very hard. The advantage you have is a husband, parents, siblings who care about you. I have the Lord and a few friends, nothing else. But I believe help will come. your friend, Aileen

[ChrissySunshine]

Hi Kara, I'm so sorry to hear you have yet another symptom....I know what you mean....that's why you're moderator of this "complex cases" section, right? Yours is for sure a complex case, and if you think of it, everything IS connected really...

Regarding working, personally, if you can get by without it for now, I would wait, you have soooo much going on! Plus, you'll have to be out for a while with your surgeries.

I just got a part time job (probably only under 10 hours to start) a standing up job as a Sales Associate. I'm hoping and praying first of all that I am ABLE to do it, and secondly that it does not affect my disability claim....but they DID tell me that you ARE allowed to make up to $860 per month and still be considered eligible. Seeing as you're already on disability, if you feel you really, really HAVE to work, it shouldn't (?) affect your disability much...but I just don't know!!

I hope you're feeling a bit better today, I'm gonna give you a call this weekend when my minutes are free. I love you and pray for you (and all of us) every day!

Love, Chris

[tj3383]

You should post the cities/locations you are looking at for surgery. Who knows, maybe someone has a vacation home or mother-in-law apartment not in use.

[Bessie]

Hi Kara,
If your surgeon is in Houston you can stay with me.....I am serious. Please let me know.

[Kara29]

The Surgeon is in New Hampshire. (Nashua/Manchester)

[ihurttoo]

I know that you know that there is no way you could possibly work in your condition. It is just one of those irrational thoughts that comes in our heads sometimes when we want to do something to help, but dont know what. But, you and I both know, working isnt it!

HOWEVER, AFTER your surgery and recovery, who knows?!! You may feel so much better that you actually might be able to go back to work part-time for a while and if that goes well, who knows, you may be able to go back full-time after that! It is of course, just hard to say how far reaching the PNE and VV is, until after your surgery. It may be much more far reaching than you or your Drs. ever realized. And if that's the case, you may recover and feel better afterwards than you ever dreamed possible!

Right now, you only have to take a minute at a time, an hour at a time, and a day at a time. I know that's what you have been doing, but that's also what you have to keep on doing until this surgery and recovery are behind you. If there are still other issues to deal with after that, then we will deal with them as they occur. But right now, you have SO much hope that you havent had for a LONG time! You have been waiting for YEARS to even get the PNE, VV, and Clitordynia d/xed, and then, waiting and waiting for this surgery. I really, truly believe that you are going to be helped more than you can even imagine by this surgery! So, please just hold on a little longer.....you are almost there!

I hope that the minutes, hours, and days start passing more quickly until it is time for your surgery!

Sending love and hugs,
Amy

P.S. Octoberfarm, that was so very nice of you to offer her a place to stay in Houston (if her surgery was there.) Not many people would do that for someone that they had never met. You really have a big heart! Though her surgery is taking place elsewhere, your offer was very kind. Though her surgeon is in NH, I think one of the other 2 Drs in the US that do this surgery IS in Houston! So, if for some reason things dont work out for NH, it is good to know that she has that option. I know we would ALL feel better knowing she was with one of "the family". Again, that was very, very nice of you to offer! Hugs to you, Amy

[TexasHoney]

Kara, I am sorry to hear you are having such a rough time. I know you have had more than your share of troubles. It does't seem fair. I hope you start feeling better soon. I will keep you in my prayers.

Hang In There
TexasHoney

[ICLori]

Kara, I'm so sorry you are still in so much pain - you need this surgery so much, and you are so brave for pursuing it. I wish I knew someone in New Hampshire or had a place there. I feel so bad that you are having this worry about how to pay for the hotel stay, on top of everything else. I hope things will work out okay and that you won't have to work or anything or risk your disability benefits.

Blessings,
Lori

[sandramac]

One door closes, another will open!
Love you Sandra

[MakinIT]

Kara

I feel awful for you..you must be in so much discomfort to say the least, I've had my own days where I've laid sprawled on the bed with the fan pointed my way...

I was looking at SS and going back to work, just their rules, b/c i am going nutz. In reality, if i sit at a desk I will be found unconcious and drooling but if I am moving I will do ok. I get so depressed b/c i have all this education but can't do anything with it. And, I'm ADHD with drug brought on narcolepsy...how's that for irony? Anyway...from my reading and what they do to encourage you to work is allow you to work (with pay) for a year without losing your benefits or medicare. After 9-12 months they cut your beni check/medicare...but if within 5 years you have any problems related to the original reason you were put on SSDI you go right back on. THAT is my understanding. Of course...the government reinterrupts stuff like an art critic at an abstract art show...one person will tell you one thing about the rule, another will tell you his interpretation. (you generally get stuck with the ****tiy interpretation..'oops bad word and bad spelling) Anyway read on the website and look at their ticket to work program...personally, that doesn't flip my dress up. the jobs look like entry level envelope licking but they are supposed to have vocational people to help you match your skills and abilities.

Again...sorry you hurt. Thanks for being so helpful to me. I just ache inside, as usual...husband and I got to go away for an entire 2 nights this weekend (first time in 10 years) and made up for it in, well, intimacy....lets just say I needed W-D 40 and a lot of talking between the two of us as to what our problems have been. It has been 3 years since we last tried this. I feel as if I have been riding bareback....naked. and everyonce in while a thorn got through. Not saying it was bad, but I am paying now. We went to an art show in Seattle yesterday and were going to go to the Music Experience and Pike Place Public Market (home of the original Starbucks....Every caffiene addict's holy shrine) however we've been there before...went to rest in hotel and well... left when we had to check out today. So my, uh, clitoral area has an ice pack and a fan blowing as I type, and a heating pad over my belly. Poor hubby, worries the entire time he is hurting me...if I even make a noise that slightly sounds owieish he stops.

Kara..You've been so kind to everyone else on this board and helpful...I guess maybe I told you about that to try to make you smile a little.. I hope i did. We are all in pain, some worse than others...you've got it bad. I can't even imagine a paper cut on my clitoris. I would be sobbing. My husband would havee to commit me. I admire your bravery and nonchalance with this!

Tracey

[stac7_8]

I know right now u feel lost due to the money end of it...and I would too. But do you belong to a church or do u have close friends???

I only ask cause maybe they could start a fund raiser for you. Find out how much your lodging would be and then figure in food and whatever else u would need and go from there.

I mean it is alot better than losing your disablility....maybe u or a friend could call the local paper.

It's worth a try...and if don't try then u will never know.

The other thing is do u have any family....or does any of your family have friends that live whereever this DR is?? I know it might be strange to stay with a stranger but if that person knows that other person and says they are good people....u might find a place to stay for free.

Just a thought....I would hate to see you not be able to get the help that u need.

Also depending on where this DR is....see if someone has a timeshare close by. If someone does then u would only have to pay for that and it can be free to very little in the price....I used to have one.

See if any friends have any "points" on the their credit cards and if they would get a room with their "points"

Those are the only ideas that I have. Sorry I don't have more.

Many hugs coming to u. Take care and keep us posted

[kjd]

Kara

I have these exact symptoms and I am just starting lycria. Its horrible isnt it but you are not alone.

i have been suffering with clitodyina for 2 years now
x

[Kara29]

I will take everything you all suggested in and try to find a way to do this without losing my Disability. Thank You all for caring so much about me and lending some very helpful support and ideas.

You are all in my heart and prayers.

Love and Hugs to you!

Kara