Hey everyone! I've been somewhat of a silent visitor to this site for some time now, and just never took the time to get an account and speak out. Partially because maybe I didn't think I had anything to say that you all didn't already seem to know.
This is probably going to be THE longest post ever.... so I apologize in advance. Feel welcome to skim/skip to the end...
4 years ago I was unofficially diagnosed with lupus. I first went into the doctor after having a bout of extreme fatigue, fever, headaches and sore/stiff neck, and swollen lymph nodes. My PCP tested me for Lyme's disease, but said it was negative. The next week I had summer band camp, and was spending 6 hours in the hot Missouri summer sun every day for a week.... it completely drained me. about
4 days into the week I just crashed and burned. I had a rash on my cheeks, I couldn't remember the combination to the band locker that I'd been using for years, my joints hurt and were visibly red and hot to the touch... still had a fever and no energy.
I'm not the type of person to complain. Usually in the past my mother has had to force me to go to the doctors (I walked around for several months on a completely torn meniscus and swollen knee before I finally went in for an xray/MRI). I definitely didn't want to go to the doctors again so soon... but my mom dragged me, and my doctor took a wide panel of blood tests. (lucky for me I don't have a problem with needles!)
When the test came back with a positive ANA and some other numbers that were askew (I don't exactly remember which ones...my mom has it written down somewhere), he recommended me to a rheumatologist. Made an appointment, but the first
opening was a month away. So when it finally came I was feeling better. Sitting in the rheumatologist's office I had a huge survey of "in the past 3 months have you ever felt ____ or had ____" survey to fill out.... and an alarmingly high proportion of the questions my mom and I had checked off as things I had recently experienced. When I saw the rheumatologist, the visit was short. He asked some questions and tested my range of motion- which was good, because at this point I was feeling completely healthy. He said he could run some tests but that they wouldn't do any good because they most likely wouldn't test positive unless I was showing active symptoms.... but that he felt he could honestly say just from talking with me that he was as positive as he could be without the test results that I did have lupus.
I had a follow up exam with my PCP to discuss the option of scheduling another appointment with the rheum.... but he ended up suggesting that I wait to be diagnosed. He agreed with the rheum. - he too found lupus to be the most probable diagnosis, but he told us that being diagnosed would hurt me when switching to my own health insurance, if I wanted to go into the military, it could even affect getting a job if employers saw my unreliable health as a problem. His suggestion was to live a healthy life, limit things that appear to produce flares, and just make regular doctors visits if anything extremely unusual showed up (pain that could suggest kidney involvement or pleurisy...). We agreed with this at the time, because I was kind of scared of the limitations that I might be faced with.
For a while it was pretty easy to skirt around flares by managing sun exposure, diet, exercise and sleep (my PCP prescribed sleep medication at one point because my lack of sleep was causing some symptoms), so I thought "Ohhh yeah, I can do this myself. I don't need loads of medication to keep this under control".
I am now in college and constantly battling stress trying to fill out internship applications and the GRE, etc. My health has become a wreck. It seems like 80% of this semester so far I've been waking up with stiff joints or a migraine or some other random symptom that makes me feel like absolute crap. It's affecting my focus and making it especially hard to get up for my 8 am classes (the only time physiology is offered at this huge university, go figure.) and the symptoms just seem to be getting more intense with less time in between occurrences.
It's difficult because I have tried talking with a couple of my professors and for the most part haven't been received well. When they ask why I haven't told student disabilities services about
this and gotten an official compromise worked out to work around my health issues, I have to explain to them that I haven't had it officially diagnosed (which student disability services needs). They don't take me seriously, thinking because it's not diagnosed I'm just making it up.
I'm in a competitive program and I'm afraid that my health problems are going to get in the way of me succeeding in getting the degree I'm after, and eventually-- the job. ( I'm currently in a combined BS/MS degree for Dietetics and Kinesiology- I want to be a registered dietitian and do research in how diet and exercise can help prevent and manage chronic diseases
) but lately it just feels like at the rate I'm going I will never get there.....
SO- my question is... does having a lupus diagnosis really affect insurance rates when applying for a new company (I'm currently 20 and still on my parent's insurance but will need to switch eventually)? Has anyone had a problem with future or current employers not being understanding of the disease?
Should I start the process of getting it actually diagnosed (knowing that it will probably take a while anyways..) or should I wait? I'm also now 5 hours away from my family doctor and the rheum. who thought I had lupus... so who knows if the doctors here will be of any help..
K. my fingers hurt now. Sorry this was so long, and thanks for ANY suggestions.