Lupus Support Group

Hi everyone! I’m so thankful that I found this support group in my research for answers – I could use some help!

My “flare” history:

•I’m a 41 y.o. female

•Migraine sufferer for 15+ years

•Raynaud’s Phenomenon (diagnosed 2009 after suffering 3+ years)

•RA diagnosis 2011 – by my GP (after 2+ years of pain)

•Fatigue (2 naps/day with regular sleep at night)

•Joint pain – stiffness through the winter months kills me!

•Dizzy spells

•I get small rashes on my arms in the summer (not visible to anyone else, but scaly patches of skin I can feel)

•Low grade fever – cannot remember a time when I didn’t deal with this intermittently

•Hair loss on my head – even and throughout

•Swelling of hands, feet, knees – Summer kills me with this

•Nasal sores that won’t heal for months on end

When I’m not in what I call a “flare”, I feel well, have very little pain and can go the day without a nap.

I’ve been put on Tramadol for pain. Just finished a stint of steroids for a severe muscle tear (that came out of nowhere) and I’m now on Motrin 800, 3X/Day and Robaxin 750mg 2X/day to help with that.

I find that when my Raynaud’s kicks in, it kicks in hard if I don’t put some gloves or socks on – my entire body shivers uncontrollably. I’ve used an electric blanket in the summer to warm my body up.

I seem to get a diagnosis for one thing at a time – which wouldn’t be a problem if I actually had health insurance. Every doc I’ve seen has suggested an ANA test, MRI’s, and other blood work. Lupus has come up in several conversations with different doctors – but none have actually taken the step to run tests since I’m uninsured. I simply cannot afford it. I’m newly divorced and am self-employed. Does anyone know of a foundation, an organization or something that could help me to get some sort of diagnosis – at this point, I just want to know what it is that I’m fighting. At least I can feel as if I’m heading in the right direction.

What test(s) should I get done first? If I can only do one at a time, I will...it may take years to figure it out this way (and the normal way from what I understand) but I'm at a loss and sick of losing a little of who I am every day...

Any and all advice is soooo welcome! I’m lost! I can fight anything – I just want to know what it is I’m up against.

Thank you for any and all advice!!!

Paula

Hi Paula and welcome to the group. The people here are very caring and willing to help when the can. I know about being uninsured, it makes it so much tougher. I finally got SSDI because I have had strokes.

While having the labs is good, there is not a definitive test that will say if you have lupus or not. You can have negative ANA and still have lupus. And as your are finding out, AI diseases like to gang up on us. That is also why it is hard to pin down the lupus diagnosis. They have to figure out which disease is casing what problems.

Is there a low cost clinic where you are? If you can get in to one they sometimes can refer you to a specialist that may treat you. And there are programs out there to help with meds.

Hopefully things will work out for you. Please post often.

Alison

Post edited by: redhairali, at: 03/21/2012 11:43 PM

Hello and welcome to our site. One thing I've heard people mention here is that they attend big clinics, sometimes at universities, where they are studying and really delving into Lupus and other AI. I don't know where you are located, but maybe look into big research/teaching hospitals in your area? People in this group, and others I'm involved with have mentioned really getting good quality care.

I don't know if they require insurance, or if they'll work with you. I know having worked with HIV/AIDS patients without health insurance, I'd just go right to the finance department at the hospital and let them know that my client needed medical care. Many times the hospitals have Charity Care, or other ways to let patients be seen. Isn't it in the Hypocratic Oath? My client, who was undocumented at the time, received 100% free care in-patient and out for one year at one hospital. Hey, you never know, and you won't know until you ask.

Please keep us posted of how you're doing. You don't have to go through this alone. We understand the frustrations. We are right there with you.

Thank you for your quick responses!

I'm located in Michigan and am concerned about a few things:

1. I want an answer to my issues with as few visits as possible to docs that just don't get it - if there's someone who knows of a great doc, who listens and is up to date on most AI's, that would be great! If I have to figure out how to pay doc bills forever, I at least want to spend money wisely. I had a doc once prescribe an anti-depressant because I complained of pain and was crying in her office - she blamed pain on depression. It didn't work - just made me sleep more so I weened myself off...This is what I don't want to deal with.

2. Does anyone know if you have to have a DX in order to qualify for medical/financial help? Hawakeita - you said your patient was undocumented, I'm so happy that you were there to help him - I need something/someone just you here! Unless you're sick, documented sick, I've never heard anyone getting help here. I've searched the gov. pages for MI and it's all crazy double talk - I'm going to apply for medical help regardless of DX though - couldn't hurt!

This community has been awesome!!! Thanks so much for everything! I'm not even sure if I'm in the right support group - but I think I'm onto something...At least I can turn to people that understand what I'm going through! And I appreciate you all more than you know!!!

{HUGS}

Paula: Alison and MK have pretty much covered the basics! Since MK is a social worker she's the go to gal for this kind of info. Alison is so right about there not being a specific lab test for lupus. But there are lab tests that can be done and should be done in helping make a diagnosis. From a nursing standpoint, is there a health department near you? I would first follow MK's advice ... and keep in mind the local programs around you. Go to the lupus foundation and they can also guide you. Here you will find lupus support groups in your area ... and usually they can help guide you to physicians (rheumatologists) who are helpful and knowledgable. PS: There are physicians out there who understanding and are very knowledgable ... unforunately there are those that may not be as knowledgable in the field of lupus ... but with Benlysta the first FDA drug approved in 50 years for lupus ... times are changing. Please let us know if we can help here in any way! I'm sure you know how great this site is! So glad you shared with us.

Hi Paula! Where in Michigan are you located? I am originally from Birmingham. My rheumy is retired, but there are several good onese at DMC and Beaumont. If you call the main number, they can direct you to the physician referral department and they may be able to help you. Also, University of Michigan in Ann Arbor has a great rheumatology dept.

Lupylisa

Also, the Lupus Alliance of Michigan can help you I believe they have resources to help people without insurance pay for their medical care http://www.milupus.org/

Lupylisa

Post edited by: Lupylisa, at: 03/23/2012 11:19 AM

Hi Paula, I was in your exact position about a year and a half ago. I was paying all of my expenses out of pocket because I left my full time nursing job and ended up getting a nursing job that allowed me to work from home part time doing medical chart review. The problem was they didn't offer a medical plan. So I searched and searched for a solution and this is what I found. Through Obamacare there is a plan that is for people like us who can't get approved through insurance companies because of multiple preexisting conditions. I don't know what all of your diagnoses are but this site will have a list of conditions that qualify you for the plan. I didn't have to get the insurance denials I just did the medical waiver where my rheumy filled out that I had Lupus and that qualified me. I live in OH and I am 38. I pay 249.00 per month for my plan but it is a great plan and it has allowed me to go to some of the best doctors in the country. I had my rheumatology and neurology workups both done at the Cleveland Clinic and they are amazing. Since you live in MI you aren't so far. It was a four hour drive for me and worth every minute. Here is the link for MI I hope this will help you.

http://www.healthcare.gov/law/features/choices/pre-existing- condition-insurance-plan/mi.html

I went a little further into the MI site and here is the link for the actual monthly cost to you........its based on age and then which plan you choose.

http://www.hipmichigan.com/premiums

Here is the link on how to apply.

http://www.hipmichigan.com/content/how-apply

I ended up with a great insurance carrier in OH. Medical Mutual of OH. I think from applying to actually having my insurance was about a month. I hope you will be eligible for this. The monthly premium is nothing if you compare the cost of your appts, tests, and lab draws. Good luck. PM me if you have any other questions.

I am sorry I keep reading more and finding more links. This is the MI preexisting conditions list of diagnosis list that qualifies you for the plan. You mentioned that you have RA and it is one of the diagnosis that makes you eligible. Okay, here is the last link. LOL.

http://www.hipmichigan.com/node/10