New Forum Member

[CoraJo]

Hello, I am new to the forum and thought I'd start by sharing a bit about myself or "my story". It's really been a long trying year. On December 17, 2008 I was diagnosed with Wegener's granulomatosis. It took over a year of doctor visits and almost my life before this was determined. I went from 125lbs to 88lbs. I became horribly riddled with arthritis that left me bed ridden and wheelchair bound for 8 months. They tested me for HIV, Hepatitis, Tuberculosis, Gout, Rheumatoid arthritis, and repeatedly asked me if I was anorexic, but it was none of the things they tested me for leaving doctors stumped as to why this was happening to me. I could do nothing but lie in bed and slowly die. I went deaf in my left ear, lost my sense of smell, and developed what they termed “saddle face or saddle nose”. I became so weak that standing up made me pass out. I had to be carried to the bathroom and could no longer bath or groom myself. I tried several medications and went totally holistic but nothing improved my health. I lost my job. I couldn’t finish my schooling for graphic design and I filed a chapter 7-bankruptcy claim. I had no choice but to apply for disability benefits which I still have not received my determination letter so I’ve gotten no assistance there. I have no insurance so I can’t afford to get the help I need. I was left with no choice but to call 911 and be taken to the ER. They immediately admitted me in to the hospital just by the sight of me. They began running tests and drawing tube after tube of blood. I had 20 different doctors visit me and ask question after question. They gave me a blood transfusion first. Then I had a Lymph node biopsy, a tube put in my left ear, and unpacked my sinus cavities. I had x-ray’s and cat scans and dozens of examinations by several different doctors and specialists. They were hung up the anemia, which wasn’t the root of why I was dying. It felt like my body was devouring itself. Finally, a wonderful doctor was able to connect the dots visited me. That was the first time I ever heard of the disease termed Wegener’s.
Thanks for having this site available for a source of support!

[crackers]

hi corajo.
wow you've certainly been through a very rough time.that's the problem with wg,you can be seen by seven different doctors who will see seven different symptoms and treat them individually. it just needs one doc to see the symptoms as a whole and,as you say,join the dots.so what is your current situation? are you on meds now and how are you physically?
john

[CoraJo]

First thanks for inquiring unfortunately I haven't been able to receive the treatment the doctors believe I should have due to red tape. I was prescribed medication after my two week hospital stay but I have not been able to make any follow up visit because of our ridiculous health care system in America. It truly is a disappointment. So currently I am waiting for a letter before I can take the appropriate measure concerning my health. It's all a bit much to take-in but I'm trying to stay positive. How are you doing?

[Sangye]

What???? You're not on meds? (Oh, and hello, welcome to the group! ) I might be able to help you navigate a bit through this disastrous no-health care system we have. While I do have private insurance, I have state medicaid in addition-- various types. You can qualify for that immediately. Surely someone must have gotten the ball rolling in the hospital? Where are you getting stuck?

[CoraJo]

Since I was approved by SSA for disability I was told that I did not have to fill out anymore paperwork to received public aid I just had to send the documents that were listed on one form, which I did at the end of December. They told me that my case would be expedited but I still haven't received my card in the mail which I call inquiring about nearly everyday. So everyday I wait for the mail in hope that I will receive my card and I can more forward. When I left the hospital they prescribed me meds but I have taken them and can't get refills without blood work and can't get the blood work without the card. Besides that I still am waiting to receive my disability benefits that are in limbo so I can't afford the meds even if I had them. It's very frustrating. It seems there is no help just talk and dreams of it.

[Sangye]

SSA is federal and they don't communicate with the state regarding your aid. You must file a separate application for state medicaid. So I think you'd be waiting forever for a state card. You can expect to get lots of wrong answers from state and federal offices. Here's what I recommend :

Step #1 : Go back to the ER. Tell them whatever it will take for them to see you. If you're having symptoms, list them, and say, "Oh by the way, I was just diagnosed with this rare disease that is 100% fatal without treatment, and I'm not getting any treatment for it." They'll do your blood work and get you med refills.

Step #2 : While in the ER, tell them you don't know how to pay for the drugs and ask for their help. A social services person will come help you figure it all out and do the applications for you. Ask them for the locations and phone numbers of your state aid office and what you need to do to follow up. Ask them what the timeline is for getting help and what types of help you can expect to get. Apply for foodstamps, too. If you qualify for emergency cash assistance to pay for your drugs, apply for it.

Step #3 : Your local pharmacy has info about pharmaceutical co. programs that donate drugs to the uninsured at no cost. It can take a month to get approved, so apply now.

Please do not worry about how to pay for all the medical care right now. Hospitals have charity programs and will erase/ lower all the costs or let you pay it back over a long time.

Regarding Disability : It takes several months to be approved. Once it's approved, your benefits will begin 5 months after you became disabled. I became disabled June, 2006, so I didn't get any money for June through October. They expect us to magically have resources to live on for 5 months. The bottom line is, don't hang your hat waiting for Disability money. Gather whatever state assistance you can right now, since that gets approved faster.

You have to move on all this quickly and get all the balls rolling, even though you are no doubt too sick to do anything or think much. Ask your friends and family to help you get around. As one state worker told me, "You can't blink."

[crackers]

hi corajo.
i can't believe you were left without meds.our health service here has its critics but if you arrive at the er with a problem you can be certain you wont leave until it is investigated thoroughly and if it can't be sorted in the er you get admitted.the cost of the hospitalisations and numerous tests,x-rays,scans and surgeries i've had over the last 2 years must run into 10s if not 100s of thousands of pounds.if it needs doing it gets done.i hope your new pres. gets things changed and quick.
john

[CoraJo]

When I was in the hospital two different state caseworkers visited me regarding payment and I was given paperwork that I completed and returned to them. I have been given a caseworker that’s handling my public aid case. I contact her several times a week to check on the process of my case. She told me that since I was approved for disability starting Nov. 2007 that the state puts you in an expedited list for processing that takes 3-6 weeks as opposed to the 3-6 months if you have not been approved for disability. I wish the reason for my inability to receive proper health care were due to something that I needed doing or that I was just sitting around waiting on a miracle but it’s quite the contrary. It’s a full time job trying to get the help I need. It is all red tape and rules and regulations and NO compassion or humanity. Yesterday I went to the office of the doctor whose care I was under while I was hospitalized to get him to fill out a form that certified that I was diagnosed with Wegener’s and while I was there I told him what was going on and he told me that I needed to wait for the medical card and that if I was really feeling crappy to back to the ER but if it was not an emergency that they wouldn’t admit me without the card anyhow. I’ve been told that a number of times. I spent countless hours researching any resources or support I could find trying to the help I need. That’s how I ended up joining this forum. I contacted the vasculitis foundation and many other organizations trying to educate myself on what was happening to me. I just try to stay as positive as one can be in a situation like this. I really appreciate you taking the time to help. It’s nice to get some of this off my chest.

[crackers]

this is the place to come to scream shout and holler.we've all done it and we all understand it.sometimes it's frustration sometimes it's just the relief of finding other people who know exactly how you feel.as for help and support, you will get it here.

[Sangye]

I totally understand. I've had to wade through it alone without family to help. I've had friends who could occasionally offer help, but as you know, unless they're on it from the start you can't get them caught up. I always have to stay conscious and strong enough to keep it all together. Bet you feel the same way.

I don't think the ER will turn you away for lack of insurance. Especially since your doctor's office is so awful, they're not likely telling you the truth. ER depts have signs that say all patients must be treated regardless of nationality or ability to pay.

I have two ideas for you, given the urgency of your situation :
1) Call your state senator or representative and ask for their help. It's a trick my mom taught me. Tell them your situation, and that it's a real concern that you could die or be permanently impaired if you don't get treatment. Tell them you don't want to take their time, but you also don't want it to reflect on their state's health care system if you die because of their red tape. Wouldn't look good in the media, you know? You can mention that you're exploring #2. It's not unusual for them to step in and expedite things like this.

2) Call a tv station and ask them to cover your story. They're hungry for this type of thing. Someone watching will expedite it for you, get your meds, etc....

You can get it all off your chest here, because we all understand.