what are my options?

[stacyY]

HI everyone,its stacy, back again.
Been a ruff few months for me since November acculy. I had a really bad flare up the week before and including thanksgiving. Ended up in the Er, being told ohh you have a uti and a small cyst. Which we not the true sourse of the pain, finding out after another week of the pain still there. Ended up with a Bladder infection which was irritation the IC. then I saw my Uroligist she placed me on an Antibiotic for 6 months!!! She thinks this will help settle things down. One good thing found out from the Er-they did a Cat scan- found on my kidney that i have a scar on it. not sure why. So then my family doctors sent me to a specilist to make sure its ok. HE agreed all the issues where from the IC , you know the extra red blood cells in the urine.
Well i was doing better for a week or so, after that,then I had another flar up, this time, Ohh yes, I forgot to add, my Ob/gyn, has told me, that when she did a laporoscopy in 05 to look for Endometriosis, She now thinks she missed finding it and that She strongly belives 100% that i do have it.
So isnt it nice. So about 2 weeks back I had another flare up of the Endometrosis. which took me about 2 weeks to recover from this. lucky i was able to get threw the ruff spot for a week off of work and now i am only working a few hrs a week, so i managed threw all last week.
Because i need the insurance threw the state, thew the medicaid program, I am only able to make 500$ gross income a month after taxes... its only about 430$ if i manage to work every day of the month, which lattly its not been happening. The stress of being alone, no help to pay bills, and wondering what do i pay the rent or the phone or the car insurance... I just dont know what to keep this up. I know i cant manage with out the insurance because i am on so much medican alone it be over 1200$ right now, Besides the IC, and the Endo, i have a B12/Iron deficiency, IBS, hypo-thyroide, plus take for haveing this chronic pain an antidepression medication, and also acid reflux whic is getting worse by the day.
Not I went to the doctors on this last flare up to my Ob/gyn, I was in so much pain she say to me finnaly we are looking at a hysterectomy(im 33-no kids) knowing the insurace company is going to throw a huge fit over it. So i told her how my Family doc recommended, that I go to the University of Michigan Hospital(is equil to the Mayo Clinic hospital) and is jsut 2 hrs drive for me.. so No i am going there where both a uroligist and an ob/gyn will work together or so i am told will see how it goes.
I have thought for a long time on this and wonder if a hysterectomy is my best option, almost all except maybe 1 great grandmother had hysterectomys by age 33 is the oldest...and thats on mothers and fathers side of the family. But if it will get ride of the pain it will be worth it Since my pain is on a hormonla cycle when it flares up. But what if its done, and the pain comes back. My chance for a baby is gone forever.. I am divorced since 2001, no bf now, no man.... knowing my luck a few months after it was done i meet the right guy and he will want kids and i will say i cant thenhe will leave.
I know I have so much stress right now and its not good also for this condition. Seems my vaginal muscels are clentiong together and making things worse in the last month they have increaded my Elevil from 25mg to 150mg,lol my pharmisist is ready to pull his hair on it since the insurance is so crappy and always giving a problem.
When you are alone and have to handle everything on your own its to much stress. I honestly do not know what to do any more. I was so relived when my doctor said "you cant keep living like this" Yeah know kidding i just been saying it for about 5 years now. finnaly somone listen to me.
Last year i had to barrow money frommy friends, and i have no idea how i can repay them either. and since the medicaid program makes you live 150% below poverty, how is anyone expected to live? Its not like i can go live with my mom, and i have no other relitives to live with either. I am so frustrated i just want to cry. My rent is just 280$ and i dont have enough to pay for it. Not like i can find any cheeper rent. And since i do not have any kids, I do not qualify for any other programs or assistants. I do get food assistance, but thats it.
And what really bothers me, my mom will come to me and ask to barrow money.. she makes 6times more then i do.... I usualy give to her, but if i ever ask her she say she dont have it sorry... I really have no idea what to do any more, Living this way is not possible, Its either I take my medican and see doctors, or i work and just take let my health go to pieces. But with a flare up on medication every few months lasting 2 weeks, I have no idea what it would be like without it. This life is not worth living like this. no matter what i do, I just cant win.
So anyways... If anyone out there has any advice.. I sure need it. I cant keep it up much longer. and if the hopsital doesnt work out god only knows what will happen then. Ohh yes and I thoguth to find another job.....but lets face it, with as many flare ups as i have if i get a new job and miss 2 weeks right off, i would be fired to fast.... and where i work now they understand and have subs to fill in... Its not that i need a job where i can make more money.. Its the Insurance holding me back on the money issue,and by the way did u know if you get cought making more money u get like a 125,000$ and a lot of years in jail.lol...and making 500$ a month is not worth a 125,000 fine... The need right now for the insurance out weights the need for a lot of extra money... I just dont know any more... for it just being January its been a Ruff year.
I know a lot of you been threw this, what are my options???
thanks everyone!!!

[ICNDonna]

I wish I had some answers about your finances. I do think you may need to learn to keep what little money you have and not give/loan any to anyone.

Warm hugs,
Donna

[Bessie]

Sorry you have had a rough time. Will say a few prayers for you and I hope it will soon be better for you

[SandyRN]

First of all, I think maybe your mom needs to find another place to borrow from. It's really not right of her to ask you for money when you don't have it to give her. That being said, I would make CERTAIN that you have endo before you have the hysterectomy. A lot of ladies here on this board have had hystos and still had the IC pain, and obviously, it wasn't the source of their problems. Make certain that she knows from biopsy that you have endo before proceeding with that.

I'm assuming you are on SSDI and thats why you are allowed to only make a limited amount of money in outside work? I know how hard that must be. There has to be some programs out there to help you out, like SSI maybe? SSI is money given to you because you lack enough monthly income to support yourself, and you can get it in addition to the SSDI. Go to www.ssa.gov and read up on it.

Also, you can go to churches and other charities that can help with electric bills and such that might be able to help you hang on for a few more months. The drug companies all have programs that can help you pay for your medicines. If you tell me what you are taking I can help you find the websites for those drug compainies, ok?

I hope this helps you out a little bit...if you have any questions don't hesistate to ask.

Sandy

[stacyY]

Thanks Sandy for all your advice;
I do not have SSDI, I do not qualify for it. The resons for the money restictions is due to the FIA-famiyl Independant Agency here, where i am able to get the Medicaid. I tried for the SSDI, but i was told I have to be not working for 6 month, I cant go 6 months no income, also I cant get the doctors to say i am disabled. But to get the Medicaid you haev to have very low income.
My doctor did do a biopsy.. thats why she thinks its the Endo, which acculy the last 11 -12 years i was told it was Endo. I am happy to be going to that Uof M hosptial. Just a few weeks to go. I thought i was doing better the pain was gone since last week thursday.. I took a nap this morning, and woke up in pain again. will be the 3rd week of this month. by the end of the week its seems to get better, but beginin of the week is horrible.
I do get the patient prescription help for my Elmiron. My insurance was paying for it then all of the sudden it stopped. But now i have that.thank god cos no way i can pay for that.
Maybe after i see the UofM hospital i can get a better judgement on things and maybe find if i can qualify for the SSDI, but even with that, then i dont think i would be allowed to work would I?
Thanks so much for all your thoughts i really appreciate all of it.

take care
stacy

[SandyRN]

You can work an earn up to a certain % of money, and I'm not sure how they figure out what they allow you to make or if there is a certain cut off. I think it's something like 1600.00 a month total between the SSDI payments and what you can earn. Say you get 800.00 a month gross from SSDI, you can earn an additional 800.00 a month by working a job.

Check out the social security site I gave you....there is a ton of info there.