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

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.

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.

no i haven't tried that. and i also am wondering,
so people with Lupus are really sensitive to heat and stuff right?

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

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...