repost for new member prettyjazzyone

[SharonA]

Today, 05:04 PM #17
prettyjazzyone
ICN Member

Join Date: Aug 2008
Posts: 1

Very Sad And Depressed
Hello Everyone,

I finally got my login. I've had Severe IC for about 2 months now. Unfortunately, I do not have insurance - not good for someone that has this disease. I went to a urologist last week and he wants to do bladder installations using Elmiron (3 x per week for 6 weeks). I do not have the money to get this instills. I get Flares that cause me to scream from the pain. On Sunday, I cried and screamed all day because the pain was so severe. I'm on my period now and have the vaginal pain constantly. It's hard to believe that I've never heard of this and have suffered so much. I have a temp job and cannot tell them what pain I'm in. I don't think I can work much longer - it's too hard. I want to know is it hard to get a doctor to put you on disability with this condition? I don't know how you women have dealt with this severe pain for this long - I'm severely depressed and am in constant pain. This is like a curse!!

I read your messages and, although it's comforting to know that I'm not alone, it's a very sad situation that we are all in. This is now way to live!!

Estev

[SharonA]

Esteva...:welcome: to the IC Network...

I am so sorry that you are suffering and in so much pain. :( I totally understand. That is the way I was in the beginning. Today I am so much better. It is possible. There is hope and there is help.

Have you found the IC Diet yet? If not, you can find the link to it in my signature below. You diet can play a huge role in your symptoms. Please send some time going over the information about it. It has helped so many of us live with IC.

IC can be very painful, but it does not have to stay that way. There are lots of great products available in the IC Shop. Here is the link to it: http://www.icnsales.com/

There are also many meds/treatments available to help you. You can find the information about these things in the Patient Handbook. There is also a link to it in my signature below.

Since you are without insurance, you might want to take a look at the information in this link:
http://www.ic-network.com/drugassistance/

Here is a link to some information on disability: http://www.ic-network.com/disability/

[leelee88]

Hello and :welcome:

There are also alot of meds that work well for IC like Elavil ,Tofranil and Atarax that are on Wal-Marts $4.00 program, well as long as you get the in generic form. So you might want to talk to Dr about trying one of these.

[amaranthe]

:welcome: Sorry to hear you have been d/xed with IC. It IS a huge adjustment. No doubt about that! But, the good news is that even though we dont have a cure yet, the symptoms CAN be treated!

I see you already got some great advice. Definately start the IC diet if you havent already. It is the single most important thing you can do. Also, check out the link Leelee gave you for r/x assistance. You may qualify to get several or even all of your meds for free since you dont have insurance.

Since your Dr. wants to try instills, but you are holdiing off b/c of ins, why not talk to them about this and see if they can teach you to self-cath so you can do them yourself at home? Many Drs. are willing to do this. Though I have ins, instills helped me so much that my Dr. taught me to do them at home. This skill has also helped me when I have had episodes of retention.

Re: SSD, you cant apply for it until you have been d/xed at least 6mo. I think this is b/c so many ppl DO get better with treatment that they are able to continue working. Also, it often takes several months to find the right combo of meds/treatments and then for them to work. For example oral Elmiron takes several months to work. Also, the IC Diet takes several weeks to really get the most benefit, etc. However, if you have a disability policy at your work and cant work anymore, you can talk to your Dr. about applying for short-term disability. If nothing else, you might be able to use your FMLA for some unpaid time off until your meds kick in and you are feeling better.

I know things are tough right now, but believe me, this is definately the hardest time and things DO get better! Best of luck to you! I hope you get to feeling better very soon!

[VickiB]

Hi Estev,

I don't have anything to add to the great advice that's already been given, except for another :welcome:!

Hang in there, most of us do get to better days!

Vicki

[dkangel1]

I understand completely! I just been recently dx with IC and don't have insurance at all. I got dx by my OBGYN, but he would give me any meds for it. He told me to do the diet and try to get to a uro or my family doctor. Well since I am currently unemployed, getting money to goto ANY doctor is next to impossible (family doc is $65 a visit +).. It has me really depressed. My friends and family who do believe me are trying to get me to apply for SSI or SSD, but since I don't have all the medical documentation of test results (my OBGYN only dx by going through some checklist thing).. I doubt I will even qualify. I am hoping to get Medicaid at least though.

Just hang in there and follow the advice the ladies above gave you.. that is what I am doing. And if you want to talk, feel free to message me.

[NewLife]

Hi! Have you looked into FMLA? If you are on W-2, you should qualify. There should be a section in the employee handbook of the company that you get paid from (not the one you work for). FMLA will allow you to take up to 12 weeks off work unpaid due to illness, and the employer may not fire or retaliate against you for taking FMLA time off. You would get a letter of approval from your doctor for intermittent FMLA and can then take time off as needed when you are in pain. Some companies have short-term disability insurance plans that pay you at a reduced rate while you on FMLA. Not sure if a temp position qualifies, but this is worth looking into.

Also, your condition qualifies you for reasonable accomodation under the Americans with Disabilities Act, so, for instance, if you need breaks to use a bathroom, your company should allow this. You can contact http://www.ada.gov/ and see if they can provide any guidance on whether your temp employee status affects this. If you work for a company of 15 people or more, you should be covered undet this Act.

Also, I don't know about your relationship with your employer, but I told my boss right away because I don't want him to think that I am slacking off when I am sleepy from medication or have to go to the bathroom or to the doctor. People are generally nice and understanding, but look up your rights under FMLA and ADA before you tell them to make sure you are protected.

As far as building a case for disability, I read that 85% of initial applications get denied. I think that having a history of illness-related absenses from work documented under FMLA would make your case much stronger. Also, if you were just diagnosed, this would make your case weaker. Give it some time. You could also look into buying private long-term disability insurance if you anticipate that IC will eventually make you unable to work.

And, finally, the diet is a must! It really works! On a scale of symptoms from 1 to 5, following the diet alone takes the intensity of my symptoms down by 2 points.

[JennaS]

I am so sorry for what you are going through. I have been there. I got diagnosed when I was 15 and IC didnt even have a name yet. I was in so much pain and it absolutely ruined my teenage years. Elmiron was not yet on the market. But for some unknown reason after about 2 years of doing nothing (no meds, no special diet) it started to feel a little bit better everyday. By my 18th birthday, it was gone!! I didnt know why-but I was happy. I know now that I went into remission. I had several pain free completely normal years. It did flare up again when I was 23 for about a year but it was urgency only and I took Ditropan for that. Then, once again I went into remission for 5 wonderful years!! So I just wanted to offer you some hope. Many of us IC'ers do go into remission and I hope it for you as well.

You should definitely apply for Mediciad asap. I am a sales rep for a company that sells catheters and ostomy supplies and could lead you in the right direction if you needed the manfacturer to sample you or discount your supplies.

Something will work for you. You just need to find the winning combination. But you will find relief....