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Sjogrens Topics => Living With Sjogren's => Topic started by: ynevar on September 27, 2010, 09:47:47 AM

Title: No hope in sight...
Post by: ynevar on September 27, 2010, 09:47:47 AM
I called my case manager, left a message for her to call me back.  I think I may try to see my doctor on a walk-in basis today.  This weekend the pain was so bad that I went into the clinic.  I was treated like I was a grovelling junkie.  Had a sinus infection 1.5 weeks ago, which turned to bronchitis.  Finished the antibiotics, using an inhaler and taking nightly shots of Nyquil.  I continue to have severe bronchitis, this morning and last night I was coughing up small amounts of blood, not sure if it is from my lungs or from my dry throat.  My lungs just hurt...  Sinuses bothering me still too.

I also called the Rheumatologist in Seattle.  Last week I had sent him all of my records (they showed repeat sinus infections, 2 bartholin's cysts in the past year, 2 eye exams showing extremely dry eyes).  I have not heard back yet.  I have so little hope right this second.  I am frustrating my family, my husband and myself.  Lost my job.  Feeling like I am nothing but a drain and don't contribute anything, although I know that's not true.

I am severely depressed over all this on top of feeling unwell....

Title: Re: No hope in sight...
Post by: bloodless on September 27, 2010, 11:34:15 AM
If your coughing up blood and in pain, you should go to minor emergency clinic or the ER. Don't wait around hoping to get worked into the schedule. If you don't take care of yourself you can't take care of anyone else. I hope you feel better soon.
Title: Re: No hope in sight...
Post by: ynevar on September 27, 2010, 12:30:03 PM
Okay a glimmer of hope.

I am seeing the doctor tomorrow morning.  I am okay enough for now, and am not going to the ER and not going to the clinic unless my doctor is there, he is out of the office today so I won't be going in.

I am scheduling the salivary gland biopsy today, just talked to the nurse for my Rheumy in Seattle.  We can (barely) afford it but I cannot wait for mid-November for a consult.  I need a diagnosis and help now.  Even if I show negative on the biopsy, I am going to meet with the Rheumy then and request treatment prior to me leaving Seattle. 

I am so angry at this native clinic.  What a crock of crap.  They denied my request to be sent back to the specialist, or even their specialist in Anchorage.  They really suck... My poor PCP docs hands are tied.  His case manager is mad that I was treated so badly this weekend.  She has known me for years and knows that I have a great work ethic and it must be killing me not to be working.  She knows I am not drug seeking and that it must be bad if I am asking for pain relief.

I hate these people that run this clinic.  I think my husband and I are seriously considering suing them, for the cost of my medical care that I have sought outside them, the cost of my last trip to Seattle, the one I am about to book for my biopsy, the cost of the PCP I went to outside of their system because they weren't listening to me (who I can no longer afford to pay), lost wages and pain and suffering. 

I am not a litigious person but this is downright ridiculous.  I am off my pity pot and ready to kick some butt.  HAD ENOUGH!
Title: Re: No hope in sight...
Post by: navydad on September 27, 2010, 01:04:04 PM
welcome to the future of managed health care,,, go for it,, kick some a%%
Title: Re: No hope in sight...
Post by: ynevar on September 27, 2010, 01:31:34 PM
I hate the fact that the rest of America will be fighting for their care like I am now... they just don't know it yet.

The VA and Indian Health Services are managed care programs run by the government.  I can't imagine ANY person who has had to deal with them and has a chronic illness would be all for the rest of the country having the same kind of service....


Talked to 3 attorney offices, waiting to hear back from 2.

Title: Re: No hope in sight...
Post by: Meld256 on September 27, 2010, 01:42:08 PM
Hope you hear some positive news from the attorneys you've contacted. I know this is sooo frustrating! Glad to hear you have that biopsy scheduled; maybe you will get a defiante diagnosis finally.

Don't give up! Keep fighting for yourself and your health, dear. Go get'm!!

Title: Re: No hope in sight...
Post by: ynevar on September 27, 2010, 02:03:06 PM
I am so fuming mad... I just got off the phone with the native hospital in Anchorage.  My case manager told me Anchorage denied any of my requests for the biopsy there.  THEY HAVE NO RECORD of a request. 

I was told their rheumatologist is booked several months out and that the fastest they could get me in is in November, here where I live when he does his traveling consults.  I told the case manager, if it is was your MOTHER crawling on the ground, you'd say that is an emergency... I have insurance why not just SEND ME to SEATTLE.... My insurance would pick up most of the tab.  I demanded to know the name of the person who denied my request (if they ever got it) or WHO that person is so I can advocate my case with them.

I am BOILING ANGRY....THIS IS MY LIFE and I am fed up with them....
Title: Re: No hope in sight...
Post by: navydad on September 27, 2010, 02:39:12 PM
the people you talk to and Bit&ch too are used to it,, thre used to people calling every day complaining,, there heartless and dont care one bit,, they get there 8 hours in,, go home to a loving family and then plan there vacation to the bahamas to escape the winters of Alaska,, while you me and the rest of us poor souls pace the floor wondering what keeps us from putting one through the noggin
Title: Re: No hope in sight...
Post by: Joe S. on September 27, 2010, 04:53:03 PM
Every year or so I get letters from the VA wanting me to transfer my care to them. After their attempts to assassinate me, I have no desire to be under their care. When my wife can no longer carry insurance and I am forced back to the VA, my days will be numbered. I need to find a cure before then.
Title: Re: No hope in sight...
Post by: ynevar on September 27, 2010, 06:22:14 PM
So, the native health clinic will be no help *surprise surprise*

I am going to meet with their board of directors this Thursday, during the public comment time (for which they only allow 15 minutes)--YOU can be sure I will take all that I can get!  I have arranged my own transportation to Seattle for my biopsy, was scheduled in minutes with the Rheumatologist's staff there.  She arranged everything and I am fed up waiting for them to help me, I'd be dead before they actually do anything!  ARG!

I am sorry others have to live with this type of B.S. (VA and other IHS clinics).  It is a sad state of affairs and I am going to tell the Board of Directors how it is from the patient perspective.  Not that they can do a darn thing.

At any rate, I am disgusted with the whole ball of wax.

Title: Re: No hope in sight...
Post by: irish on September 27, 2010, 10:04:43 PM
I am sorry that you are having such a rotten time, but our health care system needs some overhauling. Not managed care---but some way to simplify it. I hate to say it but when they added Medicare back in the 60's was when health care started to go down hill. I worked as a nurse all those many years and the congress just kept voting in all this crap that was supposed to improve patient care and all it did was increase the work load for the medical people and increase cost and decrease care for everyone in the US.

I remember when I first started nursing (before medicare) and the hospital I worked in had a woman there for 2 years before she died. She had enough money to pay her way and her family didn't want her in a nursing home. Now you can't even pay cash to get one extra day in the hospital. The government has got everything to tied up with rules and regs that it is a miracle we are even able to be hospitalized when we are really ill.

I just ranted on my favorite subject.

I wanted to mention that I will be surprised if you are able to find a lawyer who will even take your case. Many years ago my hubby had some stuff happen and a doctor who needed a slap along side his head. We talked to a lawyer about it and we were told in order to even be able to sue there has to be noticeable and irrefutable damage that was documented and observed. It is really hard to get a lawyer to take a case and if it is a government agency that sort of puts the kabosh on it also. Maybe a lawyer with a death wish would take your case. It is not fair, but that is the way it is. Makes me wonder how all these people are able to sue doctors and even get to court and settle.

I sure wish you luck when you attend the meeting and "give em %$#@" and hopefully get them to give a little. Irish ;D
Title: Re: No hope in sight...
Post by: ynevar on September 27, 2010, 10:44:44 PM
Well the public comment time is set for 4:45 pm on Thursday (their day is done at 5:00 pm, or so they think....) I am going to be there with my mother, my husband and we will all be heard.

I have 2 attorneys who may be interested.  No one wants to take on the Native Health Clinic--but then again... NO one thought Erin Brokovich would make the case she did either?

Title: Re: No hope in sight...
Post by: Jag on September 29, 2010, 06:09:47 PM
I really hope that you hear this as I'm intending it to be heard....

I'm an RN, I've always had private insurance... good insurance... and I've had no better care than you have. I've been sick for five years (by that I mean sick where it's had a serious impact on my minute to minute living), and nearly every doc I've seen has failed. I've been told I'm crazy, I make things up, I'm depressed, etc. When I fully herniated a disk into my spinal cord and couldn't sit, stand, or walk, I was turned away from the ER (because I had a pain management doc maybe?) the pain management clinic turned me away (the doc I saw there was out of the country that week), my primary doc turned me away. I was off work for TWO MONTHS before I even got an MRI!! Of course, as soon as the MRI was done they said I needed surgery right away! It was another month before I was in surgery, and I lost my job because I ran out of FMLA time before I was even discharged from the hospital. To add insult to injury, my heart was racing after the surgery. They didn't look at the TSH they'd drawn (it was VERY low) and did no testing. In fact, they said that I MUST have been withdrawing off of a drug! Well, I've been on beta blockers to control my heart rate for the last year now and it's not better. My connective tissue is failing through my whole body. I JUST got a script for metho. The damage that's already done is done.

When I had my last ear surgery, I was 'burned' somehow on my forehead and the doc wouldn't tell me what happened. I called a lawyer. They said I'd had an allergic reaction to some adhesive. I have scars, and I lost all feeling on the top of my head for a month. For all that, I at least found out what caused it. However, that's all I got.. except for now that doc won't see me or let me into his office. He's the only neuro-otologist in the area. My tumor is back and I have no one to treat it. It's a bad situation. There are many people who have been treated badly, and spent years trying to figure out what's wrong. If you get a lawyer involved, it's likely you're going to have more problems. I just didn't want you to get blindsided like I did. YOu have to have someone to see, and docs can ban together and make sure that no one will see you. Pick you battles. I hope that you get some asnwers soon. I do know how bad it is. Insurance isn't always the issue or the answer.
Title: Re: No hope in sight...
Post by: warmwaters on September 29, 2010, 06:39:58 PM
Jag just said what I was going to say - That thought the groups that you are dealing with may be awful and arbitrary, even if you've got great medical coverage, it doesn't mean that you are always going to get appoints and good care.

I'm lucky enough to have a good insurance plan, but it took me 6 months to get a test I needed set up, in part due to the two health facilities involved messing a whole bunch of things up. Once I got that sorted out, it was another 3 months before I could get an appointment, for an elapsed time of 9 months.  Luckily this wasn't an urgent test.

Focus on what do you need right now to get some immediate help. It sounds like you are in rough shape, and it's worth focusing on what you need now.

With that said, I hope you can get some help very soon, and get some answers.
Title: Re: No hope in sight...
Post by: ynevar on September 29, 2010, 11:08:00 PM
I was so angry that I was treated so miserably.  Not necessarily just once, but I know of how awfully the native clinic has treated folks.  No one ever stands up.  Right now I am going to say my part at their board meeting public comment time, that there should be more considerate care. 

All of my energy should be going toward getting the care I need, and I am going outside of their system to do it.  My doctor there has his hands tied, but he is a good doctor.

At the very least I will say in my brief time that I have not been treated seriously nor with much consideration.  I know this is a problem everywhere, but is not acceptable... Fortunately I have the opportunity to speak up, since this is a "public (dis)service" that the Federal government pays a high tab for.  I am glad I am seeking care elsewhere.  I have had insurance for my entire adult life and have not had to rely on them much... but for those that do, just like the V.A., my heart is saddened, for the battle they have to fight.

Title: Re: No hope in sight...
Post by: irish on September 29, 2010, 11:52:15 PM
jan, Amen to what you said. I am a RN also and I have very good insurance and have had over the years. I have been literally abused by the best of them in my state. Was treated so badly many, many times and even blackballed by one clinic who saw to it that the doctor at the other clinic told me "you will be hard pressed to find a doctor in the state of MN who will treat you". My hubby and I were just devastated at how we were treated. I cried as we drove home and hubby said to me "you just may have to die". That is when I got mad. I thought there was no way they were going to dump on me like that.

I pulled together my records and managed to make appt at the University where I finally got diagnosed with Sjogrens. I managed to be really sick and have mycobacterium kansasii and need TB treatment for one year and then got sent by my ENT, from another practice, to my current immunologist. You should have seen the faces on some of the docs in the clinic where I was told I could not find treatment in MN. They looked like a deer in the headlights when they saw all my diagnoses. I've had to report a few doctors over the years also and that also raises the radar making it harder to get good care. They want you to report a doctor that isn't doing right and then you get stomped on because you did. Wow!!!Only in the medical field.

The bottom line is this. No matter how mad you get, how sad you get, how desparate you get, you just have got to keep on advocating for yourself. It does not do any good to holler and insult docs or fight with them. We just have to maintain our dignity and fight for our life, literally. Eventually you will find a doc who will take one look at you and tell you that you are really sick. I have had a couple of them who finally noticed how ill I was and to them I will always be grateful.

I think we scare the bejibbers out of the docs because they want a quick fix for their patients and they also want to know what they are dealing with. When they meet us they are flumoxed. When they see us with all our complaints and ailments it is very easy for them to pigeon hole us as being "psychiatric" (been there) and hypochondriac (been there) and taking up too much of their time ( been there too) and they are scared to death of being sued over treating us. They have no clue and they don't even want to get involved. Not fair, isn't right, not ethical, you name it, but that is the way it is.

And then folks, try being an RN with some knowledge and the docs really mistreat you cause they think you are being a smart *&$%. They also think you are trying to tell them what to do. God forbid that we ever try to do that. Which reminds me, aren't we paying them for their service??? They are not God and they need to remember that but in the meantime they just need to use a little common sense with a caring attitude. I have said enough!!! Again!!! Irish ;D
Title: Re: No hope in sight...
Post by: ynevar on September 30, 2010, 09:29:01 AM
I don't have enough spoons to fight the clinic!

Title: Re: No hope in sight...
Post by: ynevar on September 30, 2010, 07:28:28 PM
So, I went to the clinic board meeting.  My husband and mother went with me.  We were the only people there to make public comment during the time allowed.  It started way late, but they stayed way late.  They listened attentively as I explained my situation.  They were aghast when they heard a provider told me the reason for my swelling is too much soy sauce, and said "it's practically a food group in southeast Alaska." 

I explained I have gone from a person who worked full time in social services.  Who was a substance abuse counselor, not out of personal experience but out of seeing so many native individuals navigating the system, and there being no native counselors.  I explained I raised 3 kids on my own, managed our lives and household by myself for a number of years.  I explained I have always been able to cook and participate fully in my children's lives. 

I explained the care I have received, the lack of concern or adequate response.  I asked them how would they feel if it was their mother, daughter or wife crawling on the ground, because it hurt too much to walk?  Would they be okay with the answers I have received?  It was excellent... I did a great job, I didn't yell, I didn't cry.  I explained how I had used some of my meager resources (now since I am unemployed) to go to Seattle next month to get answers.  To get treatment.

My husband did a great job of emphasizing certain points and my mother did as well.  I am glad I am done with that and said my piece.