View Full Version : New member, diagnosed ten years ago!

02-12-2013, 07:39 AM
Hello! I'm Natalie and I was diagnosed with SLE when I was sixteen. Today I'm twenty-six, and over the last ten years I have also been diagnosed with secondary Sjögren's, fibromyalgia, and Raynaud's. Every day I wake up feeling like I have just been diagnosed. Every day comes with new fears and new joys.

Fears: I am looking for support and advice about employment. I have held a full-time job since I graduated with my master's degree in 2010, but recently I have been struggling with it. My employer is not supportive of my situation and does not like when I take multiple days off. I feel judged and guilty for taking time off of work to take care of myself.

Joys: I have been practicing yoga for a few years. I have recently decided to become a yoga instructor. I would love to be able to teach full-time, to follow my passion, to dedicate my life to natural healing, meditation, and helping others, but I am absolutely terrified about losing my health benefits. Now that I am twenty-six I can no longer be covered under my parent's health insurance, and I am sure premium for paying for it myself would be sky high.

I have an amazing social support system. My friends, family, boyfriend are some of the most patient and caring people I've ever met. I love them dearly and they want me to do what will make me happy, but I have to be realistic. I cannot afford to lose my health benefits, even if my job is physically and emotionally taxing.

Is anyone else struggling these kind of major life decisions? I feel like I am at an impasse with myself.

I would love to hear how other people have overcome these kind of obstacles and have found happiness in their life's work.


02-13-2013, 11:09 PM
hi natalie and welcome.

many of us have multiple overlapping disorders.
so you are not alone with this.

i am 51 and have been retired for about 3 years due to this desease.
but many on here still work.

02-13-2013, 11:55 PM
Welcome to WHL, Natalie!

Congrats on earning your Master's degree. That's quite an accomplishment, with or without SLE, SjS and your other AI issues.

When the Affordable Care Act goes into effect in 2014, you'll see that there are more affordable options for health care for people like us--pre-existing/chronic conditions.

If you live in Cali, the health benefits exchange, Covered California, is moving along at a phenomenally fast pace as the launch approaches. It truly is amazing to see the progress of this program.

When I was initially diagnosed in 2008, I had had Gastroparesis since late 2004. Nobody thought to do labs for AI disorders. When they were finally done, it showed SLE and Sjogren's. I'd had Raynaud's for years. I wanted to shake the doctors and ask if their Cracker Jack med schools taught them anything because it seems to be pretty well known that AI conditions travel in packs--like band groupies.

Anyway, I was concerned about my ability to continue working full-time. Alas, I've not ever missed more than two consecutive days, due to illness, since my SLE diagnosis.

Of course we're all different, which is why you'll get a variety of responses.

I've only had a couple of flares, thankfully, and they haven't been as hard on my digestive stystem as my initial flare. I am truly one of the fortunate ones and am thankful.

Make yourself comfy and don't ever be afraid to ask questions. With ten years SLE experience, I'm sure you'll be able to add a lot of your own insight to the forum.

02-14-2013, 06:56 AM
Hi, thank you for your kind words. I'm sorry I don't know your name. Wow, it sounds like we had very similar journeys that led to our diagnosis. My medical team thought that I had gastroparesis for years- I remember more than once having to go to the hospital and eat radioactive eggs and apple juice so they could watch and measure the time it took for them to go through my system.

Do you really think the affordable care act is going to make decent health care coverage affordable for people like us? I genuinely hope so, I'll keep my fingers crossed.

My flares are unpredictable (shocking, right? :wink:) and are often coupled with some kind of viral illness. They last anywhere from 3 days to a couple of weeks. The longest I've ever taken off for my current job is 2.75 days, and my employers are throwing a fit about it. IDK what to do about it, so right now I'm just playing the waiting game and showing up every day in spite of it all.

02-14-2013, 08:11 AM
Hi Natalie,

You know what? I am working, because we need the money and most of all the health insurance,but it is getting harder almost by the day. So for me it is just a matter of time, until I have to quit. I am 57 and I have worked all my life, so if I can't do it anymore, I am ok with that.
Some emploeyers are just heartless idiots.
I hope you can make the right choice for you. Feel better.


02-14-2013, 12:22 PM
Just launched today, the website for basic information regarding the ACA and a cost-estimator for Californians, can be located at www.coveredCA.com.

Even if you're not in Cali, you may find the website beneficial.

02-14-2013, 12:39 PM
Hi and Welcome!

One thing that you can do to help with your job situation is if the company you are with has more than 50 employees is to talk to the HR department about the FMLA(Family Medical Leave Act) as it allows for so many weeks(12 I believe-its been a while but I did have to activate mine)and you can split up the time-one day here another there,etc in order to take care of Dr issues,or if you are ill.

If you do not work for a company that large ALWAYS cover yourself by going to the Dr and getting a note for your absence,talk to your dr about the fact that your employer is not supportive,etc and keep a copy of the note before you turn it over to your boss or supervisor.If they terminate you due to absenteeism issue you can still file for unemployment and will have the notes to back up that you were ill and not just trying to take advantage.Even if you live in a terminate at will(either you or employer)state if they fire you for excessive absenteeism it kind of looks bad especially with a chronic illness diagnosis.If you are able to enact the FMLA they kind of get their hands tied.

Best to you and Welcome.

02-14-2013, 07:12 PM
You having your masters degree gives me hope! I had a bad relapse so whenever I get better I want to go back to college. I lost my insurance but frankly after the company saw I was constantly using a service they decided not cover it anymore. Depending on your health benefits I found for me it was cheaper without my insurance. I am paying less for my meds and doctors appointments.