I LOST MY INSURANCE... NOW WHAT?

At the beginning of this year my husband’s health insurance company decided to drop me from the plan. Of course they won’t day the exact reason but a few months prior; I had to do several over the phone interviews where they asked very in-depth questions relating to my diagnosis (Lupus). I feel the reason they dropped me is because my treatments and medications are extremely costly. A few months later they dropped me from the program, therefore leaving me with no health insurance with a disease that requires me to have a plethora of meds and treatments to keep me alive.

Instead of falling apart, I decided to do something about it. I know there has got to be more people like me in this situation. My investigation was very positive and I was able to find all sorts of resources for help with my medications as well as support for other things I need to help manage the Lupus.

I wasn’t fortunate enough to have the financial stability to pay in cash for medicines, doctors and treatments. In fact, at the end of last year I was forced out of a job I have had for 13 years by the new president of the companies HR department. While I was contemplating suing the company over this, I decided not to and let Karma takes its course. I did however, apply for social security disability and that in itself is a whole page on what’s happening there.

The dilemma is mainly how to pay for the medications on a regular basis and how to pay for my regular Dr. appointments. Those two things are critical in managing my Lupus.  With absolutely no income on my part the research I did came up with options that fit my situation.

What I found is this:

How to get medical insurance

Having Lupus just about disqualifies you for being able to obtain privately paid medical insurance. There might be some insurance somewhere if you can afford it but because this is a pre-existing condition I am uninsurable.  Most states have plans that you can utilize that works within your budget according to whatever income you have.

How to pay for Dr. appointments

It’s a fact that when you go to a Dr. they have difference charges for office visits that they charge our insurance. Some Dr.’s give you cash discounts if you pay in cash. Try asking your Dr. if they will give you a cash discount or if you can make payments

How to pay for Medicines

Most pharmaceutical companies have programs that you can apply for to get your medicines. There are also organizations out there that you can get assistance from as well. Below, you will find some of those web sites with information on pharmaceutical assistance

www.RXHope.com

www.needymeds.com

www.Patientadvocate.com

www.healthwellfoundation.org

www.prescriptionhope.com

www.myrxadvocate.org

www.rxassistance.org

www.pparx.org

www.patientmedicationassistance.com

I hope some of this information is helpful. If anyone has any further information to add to this page, please feel free to contact me.

Aloha

LIVING WITH LUPUS

Living with Lupus was easy at first. However, it progressively became harder as the years past. The last year and a half has been the worst its been.  I guess I should have started this blog a long time to be able to give others information so that they are aware of what is happening to people with this disease.

I have 3 grown children and one granddaughter. In the last year I have had to quit my job and apply for social security disability (that’s another LONG issue). My income has been cut by three quarters. My husband and I lost our home and are forced to move because of this disease. Although I type ugly truths about Lupus and what it does to people I am blessed to have a terrific support system around me.

NASCAR - Irwindale Speedway, CA

Early in my diagnosis I was still able to work, ride motorcycles, race NASCAR, camp, sew, play with my kids, support my childrens school, run a multi-million dollar business and all the things I enjoyed. Today (over a decade later) I find myself 90 percent in bed and unable to easily get around. Im in pain 100 percent of the time and unfortunately I find little to no relief.

Although I am having a hard time, there are break throughs  and things I do to get around the issues of mobility, medicines, therapies, insurance problems, help, support, etc.. This is why I write; to be able to give you all information, experiences and awareness of what is happening to me and what I face so that you aren’t blindsided like I was.

I am extremely empathetic to ALL people facing Lupus or any form thereof as well as their family, friends and support systems. It is VERY important to have some kind of support system whether its help, information, meds or whatever it is that gets you by.

When I say “I understand”, I REALLY do. Please feel free to email me at any time if you have questions or just need an ear. If I cant use my body at least I can use what’s left of my mind to help others.

Aloha

MY EXPERIENCE WITH BENLYSTA

After my first infusion of Benylsta I had flu like symptoms for about 3 days. Two weeks later I had my second. That time I had flu like symptoms for 4 or 5 days. By the time my fifth infusion came around I had to report to the infusion center that I was unable to do the infusion because I never recovered from the last infusion. I was bed ridden, extreme fatigued, could not eat, extreme depression, muscle weakness, Parkinson’s  like tremors, confusion, vertigo,  extreme pain and unable to control total body pain, dry eyes and lesions around my eyes, extreme and uncontrollable joint pain all over body.

In my opinion the Benlysta made me worse than before I started. I read that in the UK the medical community refused to use Benlysta because they felt there wasn’t enough data proving its long term good or bad effects and that costs were prohibitive. If I am permanently impaired and disabled even more than what I am now, then the pharmaceutical company has a huge problem. I feel that some one some where was pushed into approving this drug for Lupus patients because there has been no approved drug for SLE for the last 50 years. Therefore awareness, a cure and pharmaceuticals for Lupus needs to increase.

Im sorry my experience is bad but it needs to be said for someone who may NOT benefit from this drug and in fact get worse if they take it

GREETINGS

Today I start my blog on Lupus. My name is Lauri and I have been living with Lupus for over a decade. I should have started this blog long ago but of course being a Mother, Grandmother and Wife it gets overwhelming at times.

If you are reading this, it most likely YOU or someone you love has Lupus or is in the process of being diagnosed with the disease. What you will find in these pages is my opinions, experiences and information that I have found on my journey through this thing they call Lupus. Please do not mistake this as any diagnosis or recommendation. This is just what I have been through, feel and face.

When I was first diagnosed, I didn’t have enough information. Thanks to technology today on the internet, I am now able to find more information than ever. Be aware that everything on the internet is just that “information”. Each patients experience is different. Each person’s body reacts different and therefore YOU should weigh all your options and choose what is right for you.