When I Stopped Looking for Answers I Found One

When I started this blog back in high school I was a teenager with chronic pain that I wanted a diagnosis for. I want someone to know what was happening to my body so we could fix it. I did not realize the journey I had in front of me and did not understand that not everything could be fixed. I spent a lot of time going from one doctor to the next though and it started to consume my life.

At some point it clicked in my head I was not actually helping myself by being so focused on answers, especially as more issues developed. I finally shift my focus to making the most out of life while living with my symptoms, I started to look at treatments from a quality of life perspective with the realization that my quality of life was more important than pin pointing exactly what was causing my body to fail so spectacularly. For a few years that has been my focus. I have actually had a few doctors comment on how impressed they are by the fact I am not super focused on answers, although I have always found that an odd complement. Yes it would be nice to have something simple to say when people ask what is wrong with me but it is not the be all end all. Of course you always find the answer after you stop looking.

A few months ago my pediatric rheumatologist thought it might finally be a good time to transition me to an adult rheumatologist. I was stable from her perspective and about as stable as we would probably get for a while in terms of my overall health and she wanted to see what they would say about my case. She referred me to a young adult rheumatology specialist.

I was a little apprehensive going into this appointment since I have had such bad luck with adult specialist so far. Both my peds rheum and PCP said how great this guy is and I trust their judgement but instead of taking as a comfort I took it to mean if I don't like this guy there is no one I will like. Thankfully I was very impressed. He went through all my past medical records with me to make sure everything was right. He told me everything he was doing and why. When he went on the computer he showed me the screen to see what he was doing. After examining my cuticles for autoimmune damage he not only showed me pictures of what the capillaries were supposed to look like and what mine looked like but he handed me the microscope he was using so I could look at my capillaries myself. He spent 1.5+ hours with me. By the end of the appointment I had the UCTD diagnosis I talked about in another post.

I also mentioned one of the test he ordered, a lip biopsy. It seemed like this was the test that was never going to happen. The day it was first scheduled for I ended up being inpatient for a port infection, Then the ENT who does them was out of the country for a month and they didn't have her schedule out for when she would be back. Finally I got it rescheduled and then it was cancelled because someone else needed emergency surgery. I was really hesitant to take any time off work for this procedure since I had little hopes of it actually showing anything. I explained that if I could not get in before I started my job I would wait till September and they managed to squeeze me in the Wednesday before. Much to my surprise the following Saturday I got an email saying I had a MyChart message. I opened the app on the subway to discover an email from my rheumy saying the biopsy was positive and I had Sjogren's Syndrome.
Cause Post Lip Biopsy I Deserved a Smoothie

When I least expected it I finally got a diagnosis that may explain every thing.

Navigating Job Interviews and a New Job With a Chronic Illness


I while back at my first appointment with my PCP he said how amazed he was that I loved a fairly typical life and my new adolescent medicine doctors expressed similar sentiments when I first saw them. The thing is, I have fought to live my life the way I do. I have taken some risk in achieving the  quality of life I have that some people or doctors do not want to take on such as a central line. However I constantly refuse to say no just because of chronic illness. For long time readers you may remember a while back I took up running, I mostly just did that because for the 1st time in years I was completely cleared for all physical activity.

When I started looking for a summer job I mostly looked for part time positions that could accommodate my doctor's appointments and even looked at office jobs that would be easier on me physically than the childcare ones I rather be at. However there was one job I applied to that is practically full time at 37.5 hours a week as a camp counselor at the local science museum. Perhaps not the best fit in terms of my medical issues but this was really the job I wanted. I applied, if I didn't I would be sure to regret it. I also applied else where.

After my interview I was told it would be at least 2 weeks before a decision would be made. In that time I had other interviews, for jobs that would probably be easier to handle with my medical issues, shorter days and more flexible hours. The week before I was supposed to hear back I received a call, I had gotten the job. All sort of thoughts ran through my head. I asked if I could call back the next day with my answer, telling myself I should really wait to hear back from the daycare I interviewed at that morning. However I soon realized what really held me back from saying yes was my concerns about making it work with all my health stuff. So the same day I called back and accepted the position. All of this took place in the time between my appointments at CHOP.

Exploring the Museum At Night
To say I had concerns and doubts about my choice was an understatement. In an appointment with my PCP I mentioned the situation and my worries but that I didn't want them to hold me back. Thankfully he agreed and let me cancel my next appointment with him since I was also going to see his colleague in adolescent medicine around the same time. And slowly but sure I managed to rearrange my other appointments and went from having 6 days of appointments in June to just two, which I am getting off. All I needed to do was email my boss saying what days I had appointments.

The other major issue I had was telling my boss about my medical issues. I legal do not have to disclose anything but I knew I would be less stressed out and more likely to stay if I felt comfortable running IV fluids and tube feeds at work. This was the first time I had faced some of these issues since I have pretty much had most of my jobs that I do during the school year pre-feeding tube. Going in to all my interviews I covered everything up. While I am legally protected against discrimination do to medical issues if I do not get offered a job there is a million other excuses that can be used but once I have a job it is a lot harder to be fired sue to medical issues. During training I informed my boss about my port and feeding tube and she was very chill about it and said I could use her office if I need to connect or disconnect at work. Overall everything seems to be working out really well and I officially start Monday and could not be more excited!