new to lupus and very scared

jojo-at-the-bux · Posted: Fri Jul 18, 2008 4:02 pm Post subject: new to lupus and very scared

So, my name is joann, and i jsut turned 27. last november and early december i got real sick and no one knew what was wrong with me, finally after countless trips to the emergency room, my child father finall drug me to the county usc hospital here in los angeles (where i live). they finally diagnosed me with lupus late january. since then i have not had regular medical care, my primarry dr doesnt seem to know what they r doing, and are trying to refer me to a spacialist. i only have medi-cal, no real insurance, and no one wants to touch me like that. i am sick all the time, i cant get up some days, my chest hurts and i have become short of breath just walking. my dr gave me an in haler, is this right???? ive been on prednisone since nov, now 20 mg a day, been on and off of plaquenil and imuran because i cant get to see a dr steady. my sides hurt all the time, my joints swell and my dr seems to do nothing. they give me i b proferen. i go to the er when i get real bad, but they have gotten tired of seeing me and told me they were going to label me a drug seeker if i keep coming back. i have a 4 yr old son , am a single mother, and am struggling to make it to work enough to pay my bills. i dont know wat to do, im sad all the time and very scared that im gonna die if some one doesnt help me. i dont know wat to do or where to turn, i can harly take care of myself let alone my son some days!! can anyone help me???

KathyW1958 · Fierce Wolf Joined: 12 Jun 2008 Posts: 587

Hi Jo-Jo,
I am sorry to hear what is happening with you. You need to see a Rheumatologist as soon as possible. I don't understand why your Primary Care doctor will not refer you to one. I am not to sure what Medical is or if it is like Medicaid. If it is you can get a list of the doctors that take that insurance and get in to see a Rheumatologist that way. I have Lupus and have had it for most of my life. I went through pretty much of what you are going through just to get diagnosed. Before I finally got my chance to see a Rhuematologist I was very very sick indeed. I hope that you get to see a Rheumatologist as soon as possible. Saysusie may be able to help you some how. She is very knowledgeable. I am pretty new here.

Kathy
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Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

laurid8967 · Posted: Sat Jul 19, 2008 7:22 am Post subject:

Hi Joanne and welcome -
Im not sure, but, maybe if you contact the Lupus Foundation of America, they can give you some names of doctors that dont require insurance? I really dont know, but I know you need adequate and consistent medical treatment ASAP!!
As Kathy said, maybe our moderator or another more experienced members can be of more assistance. In the meantime, you can try your best to avoid flares. There is a sticky at the top of our site that pertains to things you can do to avoid a flareup, and maintain your wellness as best as possible.
Please read that and take care of yourself!! Do not quit, OK? There will be someone that can help you!!
Love Lauri
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God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

Oluwa · Posted: Sat Jul 19, 2008 12:56 pm Post subject:

Hi Joanne...head hugs...

You do need regular, routine care

Try this site... http://dpss.lacounty.gov/dpss/customer_svc_center/default.cfm. There is a number there...customer service, if the number is not for your area contact your Eligibility Worker at your local district office.

They may have a list of participating doctors...

There are several people here who reside in California, some in southern California that maybe able to provide you with some direction, where to go, for proper health care with limited insurance..

Who prescribed the first Plaquenil and Imuran prior? Can you return to see them. The name should be on your prescription bottle. Who prescribed you prednisone? Can you return to them for care? If they prescribed these drugs it would leave reason to believe they should be able to provide your care.

Or go to USC County Hospital and ask for a name of a doctor, rheumatologist, internist...that would provide care...

With shortness of breath it could be a myriad of things. Do you have asthma because they prescribed an inhaler? Do have pain injunction with your shortness of breath? Possibly pleurisy, which is common with Lupus. Pleurisy is when the double membrane that lines the chest cavity and surrounds each of your lungs becomes inflamed which can cause these symptoms...
* Shortness of breath
* Chest pain during breathing
* Dry cough
* Fever and chills, depending on the cause

Having an illness without proper care can be scary, even with proper care it is. Just keep seeking assistance. Call doctors and Rheumatologist to see if they accept Medi-Cal...

Hope this helps.
Hugs..Be well I will pray.
Oluwa
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Saysusie · Posted: Sat Jul 19, 2008 3:01 pm Post subject:

Jo Jo;
You mentioned that you were diagnosed with Lupus in January at USC. USC has one of the foremost departments of rheumatology, especially for its contributions to the pathogenesis and the clinical manifestations of systemic lupus erythematosus, which is considered to be the prototype of human autoimmune diseases. Also, I am told that USC accepts medi-cal. You can go back to where your diagnoses was made, advise them that you were a patient their and you were diagnosed with Lupus and that you want an appointment with a rheumatologist. Your medical records should still be there. ALSO, ask for a copy of your records, especially anything indicating a diagnoses of Lupus, so that you can take it with you if you must make another trip to the emergency room!
I am also assuming that it was the doctors at USC who prescribed the prednisone and plaquenil. If so, as Oluwa suggested, you should return to those doctors in order to get regular medical care for your Lupus. You can also ask about Dr. Francisco Quismorio, Jr. he directs a major lupus clinic at USC.
Since you are recieving medi-cal, you must have an eligibility worker. Contact your worker and ask if they provide a listing of doctors who accept medi-cal in your area. You are looking for a rheumatologist. If you do not know who your worker is, Oluwa has provided a good resource to you for contacting the department of social services in order to get the information that you need.
You also mentioned that you family practice doctor was trying to send you to a specialist, was this specialist a rheumatologist? If so, you must be more aggressive with your family doctor in order to get that referral so that you can see a rheumatologist as soon as possible.
When you go to the ER, they have no knowledge of your diagnosis and, therefore, do not treat you accordingly. It would be helpful for you to continue to learn as much as you can about Lupus, its symptoms, its treatments and how it affects you. Once you become knowledgeable, you then become a powerful advocate for your own health needs.
At the very least, do as Oluwa suggested and find the name of the doctor who prescribed your prednisone and plaquenil, call that doctor to make an appointment and, at your appointment, insist that you be referred to a rheumatologist immediately.
The first step in getting what you need lies with you. You must take steps to find a rheumatologist who accepts medi-cal. You may have to spend a day going through the yellow pages and making phone calls and/or taking some of the suggestions that I've outlined and that have been given to you by other members. However you choose to do it, you are the one who must become aggressive and make the first move.
I know that this is all a bit frightening to you and that you feel as if you are at your wits end. But, it is very important that YOU start to take charge of your health care and you must do that by finding the right doctor for your condition. You need regular care from a doctor who specializes in rheumatic disease such as Lupus, and that is a rheumatologist.
Let us know how your search goes, if you find a doctor and/or if you get a referral. Remember, we are all here to help you as much as we can and to make sure that you know that you are not alone.

Peace and Blessings
Saysusie
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Look For The Good and Praise It!

jojo-at-the-bux · Posted: Sun Jul 20, 2008 9:48 am Post subject:

thank you for the suggestions and the support. my work only schuduled me for 11 hrs (not good) next week, but i am going to take all that spare time to try and get my doctors straight. ive been told that i am eligible for striaght medi-cal. is this true does anyone know? at this time i have medi-cal with a plan, and thats the reason im having so many problems with drs. i am goin to go back to usc and see what they say, whats the worst that can happen? im also calling my eligibility worker to find out about changing my medical. i just have sooo many questions and i have no one to ask. i know i need regular drs care, and thats y im so scared, im not sure wats going to happen to me. my cousin had lupus and passed away about 6 yrs ago. i knw she had it most of her life, but i dont knw anything else. i have no contact with my family. im trying to change that as well, but am not sure how that will go.

i feel like i have alot of problems with my lungs, i cant yawn, or sneeze or even laugh it all hurts sooo bad, and i cant draw that sharp intake of breathe. is this something that anyone else has experienced?
Also sharp pains in my sides, i tell drs and they dont know, just push on my sides and say that it feels fine. when i first got dx i had x rays of my kidneys but they were normal. so ...i know i need alot of tests done to see where im at right now.

tahnk you for ur support and posts. i hope this is a place i can come to when iam down and when i have questions. thank you all.

laurid8967 · Posted: Sun Jul 20, 2008 10:25 am Post subject:

Hi Joanne -
Im glad you are going to pursue regualr medical care. As Saysusie said, USC has a lupus clinic - thats probably your best bet.
As far as the sharp pains breathing, lupus can affect your lungs. You could be experiencing pluerisy, which is fluid around your lungs and causes sharp pains when breathing in. You should have any type of pain/discomfort breathing in checked out ASAP. When you go this week, I would tell them your symptoms right away. This disease can be managed, but you need to be monitored regularly, and you need to see a doctor ANY time you have a symptom that may involve an organ such as your lungs, heart, kidney, etc. This is when lupus can get serious and cause complications.
Please continue with your search for care - do NOT take no for an answer!! Eventually, there will be someone to help you. In the meantime, please read the sticky posts at the top of the forum for helpful hints at keeping well. We are an intricate part of our OWN health as well. Get plenty of rest, eat well and stay out of the sun!!
Keep us posted in your search!! Take care -
Lauri
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God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

Oluwa · Posted: Mon Jul 21, 2008 7:01 am Post subject:

Joann...

I've obtained the following from the website link from the first post I had written...

http://dpss.lacounty.gov/new_portal/dpss_medical.cfm

If you are having problems linking please let me know, and I will find a better link for you. This link has all the information you are looking for regarding Medi-Cal.

What services are offered?
Comprehensive preventive care services, primary and specialty care, medical office visits, vision and dental care, mental health services, hospitalization and prescription medicines.

Who can be covered?
Parents or needy caretaker relatives and children up to their 21st birthday.

Is there an income limit?
Yes. Free Medi-Cal is based on the family's monthly income after allowances for child care and working expenses. The family's monthly income after child care and working expenses must be AT or BELOW the income limit specified for the family size. See Chart below for monthly income limits after allowances.

For example, for a family of two, the monthly income limit is $750. To qualify, the family's monthly income (after child care and working expenses) must be $750 or LESS.

FAMILY SIZE/ MONTHLY INCOME

1 $600
2 $750
3 $934
4 $1,100
5 $1,259
6 $1,417
7 $1,550
8 $1,692
9 $1,825
10 $1,959

A share-of-cost for medical services may be required for families with income above these limits.

NOTE: Other rules may apply which might allow free Medi-Cal in some cases.

Is there a property limit?
Yes, depending on the family size. See Chart below for property limits.
FAMILY SIZE/PROPERTY LIMIT
1/$2,000
2/$3,000
3/$3,150
4/$3,300
5/$3,450
6/$3,600
7/$3,750
8/$3,900
9/$4,050
10/$4,200

Can an individual receive services if he/she has other health insurance?
Yes.

How much does it cost?
The family's share-of-cost depends on the amount of monthly income over the income limits shown.

Is citizenship or legal residency required?
Yes, for full coverage. If not, the person is eligible only for emergency services and pregnancy related services.

How to file an application?
Apply at a Department of Public Social Services office.
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