Losing faith in doctors. And also a new job. concerns.

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Adam DoubleYoo
Regular Member


Date Joined Apr 2011
Total Posts : 65
   Posted 5/29/2011 9:07 PM (GMT -6)   
I finally saw my rheumatologist on thursday. When I got there, he told my me primary doctor hadn't faxed them my medical records, so he had nothing to go on as far as trying to come up with what to test me for. I started crying in the room because it was so frustrating. He decided to just run everything again so we could find out what's wrong and even see if something was missed in my previous blood tests.

He took my blood pressure which was higher than average, and did some exams. I have had eczema for most of my life, and i have it very badly on my arms right now, and on my eyelids. But he noticed my face was very red, and there was rashes on my face that didn't look like eczema to him. So he took 8 vials of blood from me. a basic hematocrit test, a test for lupus, crohn's disease, thyroid issues, lyme disease and a couple of other things.

I'm noticing now that it's getting hotter outside, my face is getting redder and redder, and my face starts to burn more, and my headaches are getting worse. I recently just got a job, and I am only 20, I have no car or license, so I have to take the bus to work. I have to walk 10-15 minutes to the bus stop to go to work, and after that 15 minutes I feel like I'm going to keel over and die once I am on the bus not walking any more. My head just starts to get hot and my face burns and I sweat like I had just gotten done running a marathon.

I just got a job, and I haven't told them I was sick. I'm training right now as a cashier, part time, I wanted part time because I don't feel physically able to work 40 hours a week. I have to pay back my college because I left when I got sick, support myself through a crazy financial mess, and get a license and a car. I'm trying to focus on the positive things and try to be normal but its so hard. sometimes in the back of my mind since nobody knows what's wrong with me i feel like I;m gunna die in the near or distant future. my face is always red, and I am always sweaty so i always feel like people are gunna be judging me and all kinds of stuff. i haven;t told them i'm sick yet because nobody knows what it is. and i didn't want them to not hire me. tomorrow I have to tell them about doctors apointments i've had for months and I have 3 within the next couple weeks. so i feel like i have to at least tell them something but I feel like i'll get fired if i tell them.

ebet24
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 5/29/2011 10:52 PM (GMT -6)   
Hi! I'm pretty new to lupus myself so I'm not sure how helpful I would be regarding all of the tests they're running. It's great that your rheumie decided to run tests, sometimes I don't think they realize how scary it is to be in our shoes and not know what's wrong with us. I wasn't even sure if I was going to live or not when I was still undiagnosed-I knew something was wrong but I just didn't know what.

As for your job, I would hold off on telling them. I was diagnosed with lupus 3 days after beginning a new job as a receptionist and I was just so happy to finally have a diagnosis that I was telling everyone-including my boss. The next day I came in and they fired me because I just "wasn't a good fit" with their company. There's no way I can prove it was because they thought I would just be too much of a liability with lupus, or maybe they were planning on firing me anyway and it was just a coincidence. Either way, I don't tell anyone except close friends or family now-my current boss still has no idea. Sometimes what I will do is call a couple of days before my appt and see if I can change the time just in case someone cancelled-sometimes it works out to where I don't even have to take time off at all so my boss doesn't know.

It's great that you're trying to stay positive-I guess that's all we can do cause it's so tempting to give up. It's great that you're working and trying to figure out what's wrong with yourself and trying to put yourself in a better place financially. I just tell myself to focus on one day at a time because if I start thinking about the next day or the next week, I get overwhelmed. Good luck!

ebet24
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 5/29/2011 10:55 PM (GMT -6)   
Also, I'm not sure if you have this option, but the way I juggle all of my doctors appointments without my boss knowing is I asked for one day off throughout the week permanently and just work extra hours the other days. In my case, I work 10 hours Monday through Thursday and always have Fridays off, so I just always make my appointments on Fridays.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/30/2011 2:23 PM (GMT -6)   
I know you might feel a little strange doing this.... but have you considered using an umbrella as a shade as you walk to the bus?
I use one if I have to be outside for very long. It took some getting used to it, but I feel so much better.
Joy

Adam DoubleYoo
Regular Member


Date Joined Apr 2011
Total Posts : 65
   Posted 6/1/2011 12:04 AM (GMT -6)   
no i haven't tried that. and i also am wondering,
so people with Lupus are really sensitive to heat and stuff right?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 6/1/2011 8:59 AM (GMT -6)   
Yes, Lupus is greatly affected by both heat and sunlight, as well as by florescent lights, although the sensitivity to fluorescents is a little more rare. Both heat and sun can be helped by ibuprofen, as can some of the other aches & pains to help stave them off until you are seen by the dr.

Think of anything that inflames your body -- like a sunburn, heatstroke, pulled knee, etc -- as something that now your body is attacking with 5x the intensity of inflammation you used to have. I think of my body as hypersensitive - sometimes sounds or too much movement (walk down grocery isle while turning head) will put me over the edge.

Hang in there
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 6/1/2011 9:07 AM (GMT -6)   
Hi AdamDoubleyoo, I also don't have a clear diagnosis, but it sounds to me as if it were autoimmune of some sort what you are going through with light sensitivity rashes and feeling pain in your joints and all....are you tired a lot...

I would use a strong sunscreen if you are able to on the rash (I know it burns sometimes for me so I use a wide-brim hat often), but you HAVE to go to the doctor appts. They are more important than your job right now, because if it is anything like what I went through, you will ultimately lose any job you try to work unless you get the help you need to get better first....

I am not saying to lose your job or anything, but I would communicate to your boss the need to go to these appointments. I don't think they can fire you for medical reasons. Do your best to schedule appointments at times that will be least conflicting with the work you do (and even ask your boss if you have to if there is particular days or times you can schedule in the future to avoid conflicting with your new work hours) so they know you are doing your best also to do a good job there.

I feel for you. It is very hard being sick with no diagnosis. I was finally given a "differential diagnosis" yesterday (after almost 2 years of this) of lymphoma vs. autoimmune disorder with further tests for lupus... It is not easy, but you have to stay strong and focuses. I am in college right now and I decided that although I can't work at the moment, I will not give up that dream. So pick what is most important to you at the moment to keep you goal oriented and future-focused and make sure you stick to it as best you can.

I can't always get my assignments in on time and all that, but at least I am still going there and it keeps me looking forward to graduating and doing something with my life through all this difficulties!!! I really hope you feel better soon and these doctors help you figure out what is wrong! Nicki

Adam DoubleYoo
Regular Member


Date Joined Apr 2011
Total Posts : 65
   Posted 6/1/2011 1:50 PM (GMT -6)   
yeah, i know it is more important, I just don't want to lose the job you know? I'm so crazy about my doctors appointment, like it would be the end of the world if i didn't go to one.

I had to drop out of school when all of this started back in January, so I have to work to pay back the school some money before I can go back.

I'm just trying to focus on getting my life back together while figuring out what is wrong with me...sometimes it is very because some says i feel alright and then some days i feel horrible. Like today I feel really horrible, I'm all hot and just ugh, thankfully I only work a 4 hour shift.

Wild flower84
New Member


Date Joined May 2011
Total Posts : 3
   Posted 6/2/2011 1:07 AM (GMT -6)   
Hang in there and know you are not alone and there is someone out in the world, struggling just as you are (like me :)). Your post is the second post I have read tonight, that describes, to the T, what I am going through. I too had to drop out of school because I am too sick, owe the school some money before I can go back and I almost got fired from my job, before I finally quit, because I was missing work for appointments, multiple trips to the ER, etc. Have you looked into applying for temporary disability? I'm 26, moved across the country with my sister so that we both could finish school but, had to drop school and quit my Full Time job. Lean on your family as much as possible, I am getting a second opinion from a Rheumatologist in California, where I am from, and now am moving back with my folks here until I can get well enough to continue persuing my dreams. YOU are number one and your health is TOP priority! : ) It's hard not to stress, when your life and health are in a downward spiral BUT stress fuels inflammation! I found the following quote last October, when I was REALLY sick "When you feel like you are at the end of your rope, tie a knot and hang on" ;- ) Take Care and warm prayers to you during your struggle... smilewinkgrin

Adam DoubleYoo
Regular Member


Date Joined Apr 2011
Total Posts : 65
   Posted 6/3/2011 1:22 PM (GMT -6)   
thank you =]

i haven't thought about temp disability, because I thought you have to not be working to get it?
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