Why the ACA (aka Obamacare) Matters

This may be the only place I refrain from talking about politics, which my friends and family can vouch for as most of them are very close to unfriending me on Facebook due to my seemingly never ending post on Facebook about the current political happenings. One reason I am taking to my blog right now is because my blog is all about my health and my health is now being effected by politics. Both in the most immediate sense of how stressed I am and the toll it has taken on my body (PT the day after the election was rough to put it mildly) and the more theoretical looming idea of the possibility of the Affordable Care Act being repealed.

There are so many ways I have benefited from the ACA. Quite honestly it is the reason I currently have health insurance and as an extension of that, healthcare. Fist off my parents are self employed therefore we purchased our health insurance off the exchange (and this year I will have my own exchange plan so I have one in PA). Next off this semester due to a combination of health reasons and the fact I was ahead credit wise I choose to go to school part time. Prior to the ACA I would have been kicked off my parent's insurance due to being a part time student leaving me in a catch 22; being too sick to work or go to school so I can't get insurance, and not having insurance would mean I couldn't get the healthcare I need to get healthy enough to go to school/work and qualify for insurance.

Another big issue for me is pre-existing conditions. Before ACA if I were to loose health insurance and did not get new coverage within 90 days I would basically never be able to get my insurance company to pay for anything related to an already established diagnosis again. Basically I could pay for insurance but they would only cover preventive care for me.

Many people have told me to wait to see what Trump actually does as president before worrying or getting upset or that it is only four years. Here is the thing though, to be able to say and do that is a privilege. To not be worried is a privilege that minorities in this country do not currently have, that members of the LGBT community don't currently have, that disabled and chronically ill people don't currently have. I cannot just wait to see if he actually appeals the ACA or not because then it will be too late. I do not have the ability to wait 4 years while not having health insurance.

When You Know Your Body Best

Anyone with a chronic illness can probably tell you they know their body better than any medical professional. To say that is true is an understatement. Look at me, I probably knew at age 16 or 17 I had an AI disease but it took years for doctors to catch on. I knew steroids where helping my gastroparesis a year ago but no one really believed me until I was diagnosed with Sjogren's. This is not an uncommon phenomenon.

When I get a fever it only takes me a few hours to differentiate between an autoimmune fever and something more serious. However due to having a port the protocol is any time I have a fever of 100.4 or higher I am supposed to go to the ER. I have pushed the limits on this a couple times, making appointments with my PCP instead of going to the ER or waiting a few hours to see if it will go away. This approach has gotten me a few lectures but never caused me harm since I know my body.

Over the summer there was one incident where I was at work when the fever came on and was unsure of which way it was going to go so I did decide to play it safe and let my boss know so they could get coverage. Since I have been in situations where the first signs of a line infection came on while I was taking care of children and I thought I could push through but it got bad fast so I did not want to put myself in that situation again. By the time I got to the ER I was pretty positive it was not a line infection. However I was put on IV antibiotics within an hour and the jumpy intern was trying to find any reason to admit me he could including almost doing an ultrasound to check for appendicitis. My labs came back clean the fever went away and I was discharged a few hours later. The cultures from my port much have been negative because I was not contacted again and did not get sicker, but I know my body and did not need cultures to know my port wasn't infected.

Fast forward a couple of months and I felt a fever coming on while on my subway ride home from an appointment at CHOP (ironically enough I went on a whole rant about not going back to the ER). By the time I got home and took my temp it was normal so I brushed it off and got ready for Yom Kippur services. After services I was hanging out with a friend on my couch and by 10pm I felt feverish again. This time I had a low grade fever after an hour I knew something was wrong and headed to the ER. Once I got there no one else seemed super concerned about the situation since my fever did not register as a fever according to the ER doctor's definition. As I was there it kept climbing but the ER doctor still said it was low grade and I tried to explain that this was not a autoimmune fever and something was not right. Due to my port not cooperating it took about an hour and a call to IV team to get a culture, delaying any treatment. After much debate about whether or not I needed to be admitted due to a normal WBC and 3 separate fever level temps an hour apart they decided to admit me at around 6 in the morning meanwhile I finally got Tylenol after asking for hours and now shaking with chills. Not a fun night.

The next day (or I guess technically the same day), a few hours after getting to my room I met the attending on the floor. I still had a fever and was feeling quite awful. The attending explained that there was still no signs of infection and they wanted to stop the IV antibiotics they had me on to see what would happen. Well an hour later the Infectious Disease team came to see me, sure enough the port cultures grew in a recorded 11 hours, and to think I was almost not admitted. Of course I hadn't been started on the right antibiotic so we had to switch and my second set of cultures, which also took almost an hour to get enough blood for the cultures which called for a late night IV team visit (I officially know most nurses on the IV team way too well), also came back positive.

I am now out of the hospital and off IV antibiotics finally. This week is jam packed full of appointments during which we will hopefully deal with the bigger issues surrounding the port not working.

The moral of the story is I just need doctors to listen to me! Please don't force me to go to the ER because of protocol but if I do go to the ER with a fever please take it seriously!

A Little Rant About the Past Couple Weeks...

There is a lot I have to write about here. I defiantly need to post a recap of the Global Genes Summit I went to a couple weeks ago but I am waiting for some things on that to come together.

Since then my life has been a little hectic to say the least. I came back from the summit a little early for my senior homecoming game and it is a good thing I did because there was about 10 hours between landing at the airport and being in the ER. Some how my tube seemed to do something odd. Cue me doubled over in pain but waiting till my home nurse was coming for a port access any ways. Of course when she came she called GI and it ended with me going to the ER and being admitted. I ended up being inpatient for 3 nights till interventional radiology (IR) could get me in for a tube change.

Meanwhile during this stay my port started acting funny. It was being super sluggish and hard to flush to the point my nurse had the IV team come and put TPA(a powerful blood thinner generally used in strokes but also to help break up clots in ports) in it. I must have the only port that started acting worse after the TPA. The next day we almost could not get blood return which is needed before you can use a port. A couple days later out of the hospital I was having enough trouble with it I called home care to help trouble shoot.

Come last Saturday I was getting nervous about the port access and rightfully so. There was no blood then a drop, then the nurse flushed it and pull back again and could not get blood again. We messed around for a few minutes but it was not going well. 2 home nurse visits in a row ended with me in the ER. Long story short the last week of my life involved 3 ER trips and one day spent getting blood tests and x-rays in the morning for an IR appointment that was multiple hours late and did nothing in the afternoon. I am lucky because besides a struggling port none of these medical issues were actually a result of declining health.

However my question is what happens when you aren't dying but you aren't living either? That;s the place I am currently in. Last week I only made it to one day of work and two classes with no social interactions between (unless you count my friend having dinner with me after driving me home from the IR appointment since I needed a ride in case I was given certain meds). The week before I only made it to about half my classes thanks to the admission that week. This is not the life I pictured living at age 20, or any other age for that matter. No doctor seems to realize that just because the problem isn't life threatening doesn't mean it is not affecting my life.

Preparing to Fly with Complex Medical Issues



One of the most stressful things to do is travelling, now add some needles, medical liquids, and a suppressed immune system to that and flying goes from stressful to down right scary. As I prepare to fly to the rare patient advocacy summit taking place this week in California I  figured I would share what I have found works the best for me when traveling.

Before my first flight with a feeding tube I looked up the TSA policies on medical liquids. Basically as long as you notify them while going through security and separate them from the rest of your things you should be allowed to take them through without issue. No doctor's note required. Same goes for needles and syringes and inject-able medications. You may want to print this policy out or have easy access to it on your phone in case you encounter any issues although I have yet to have a problem.

A few days before your flight call up TSA cares. They will set you up with a TSA specialist to help you through security. This is the first time I am using this service since a friend recently told me about it so I don't have mush to say about it yet but the woman who set it up for me on the phone was lovely. She also double checked the medical liquids and injection policies for me.

If you are like me and have to travel with a ton of medical supplies make sure you pack them in a separate bag than the rest of your stuff because airlines can not charge you to check a bag of all medical items. When you check it make sure to explain what it is, sometimes they will double check to make sure it is but generally I find they take my word for it.

On the day on the flight make sure in you carry on you have enough medical supplies for at least 24-48 hours in case your checked bag is lost. (I have a confession to make, I prioritize since that would be way too much for me to carry I probably take a little less formula than I should but I won't end up in the ER with out it) In my carry on I also like to have purel and lysol wipes (airplane seats are germy!). If you have a suppressed immune system make sure to wear a face mask in the airport as well since germs and exotic germs!

Lastly is you need to be connected to feeds or IV fluids/other IV things I would try to wait until you are past security to hook up any IV things so you can still go through the metal detector (ports due on tend to set them off ) instead of doing a pat down. With a feeding tube you can disconnect and reconnect much more easily before and after the metal detector.

Good luck and happy travels!


Be Brave Playlist

One of my coping mechanisms for dealing with chronic illness is music. Not playing it or singing thankfully for those around me but just listening. Here is some of my favorite songs to listen to in doctor's offices, the hospital. or just when I am struggling with life. And yes I am super cheese and have a playlist on my phone called "Be Brave"

1. Brave By Sara Bareilles - You had to have known this would be on there since the title of my playlist is be brave, since sometimes we all need a reminder.

2. Superhereos by The Script - I love how this song is all about turning pain in to power and how everything you fight through makes you stronger.

3. Stand By You by Rachel Platten- No surprise that Rachel Platten will be making this list multiple times. This is like the anthem of spoonie friendships, a reminder that even when it feels like you are going through hell it will be okay as long as you have someone by your side.

4. Her Diamonds by Rob Thomas- First off he wrote this song about his wife who has a Lupus like autoimmune disease (possibly Sjogren's? my note not an actual fact). It perfectly captures what waking up to the morning stiffness and pain feels like "it's funny how the night can make you blind"

5. Little Light by Rachel Platten- This song perfectly captures what it feels like to be going through a tough time. It mentions feeling older than you are and how the little stuff doesn't always matter but you just need a bright spot to get you through.

6. Fight Song by Rachel Platten- (I told you she would be on here a lot) How could a chronic illness play list be complete with out this song? My favorite line in it is "I don't really care if no one else believes cause I have still got a lot of fight left in me!"

7. Be Okay By Oh Honey- I just like how upbeat this song is. It always reminds me to look at all the good things I have in life and that everything is going to turn out okay.

8. Young Blood by Bea Miller- This song reminds you that sometimes life sucks but you always have the power to make it a little better and I am still young an have a lot of time left for good.

9. Fighter by Gym Class Heroes- A song I only recently discovered but a new favorite for sure. My favorite line is "Gonna live life till we're dead.Give me scars, give me pain"

10. Flares by The Script- This song reminds you that even when you feel like you are all alone there are people out there who care about you and will stand by your side.


The Missing Pen Cap



I am not sure where I am going with this blog post but it will probably end up being a warning to all of those people who bite off more than you can chew like me. I also just need to try to calm my mind that feels like it is going a million miles a minute, as a result my writing may be all over the place. I am thinking writing will help.

Tonight I ended up near tears because I lent my pen to someone and they returned it without the cap. On the ground crawling around for the pen cap I realized I may have over done life this week and I needed chocolate or ice cream or more likely both. I wanted to think about all the things that had lead me here so in the future I could prevent such break downs from occurring in the future.

First off there is some medical stuff that is definitely going in to play here. A few weeks after being diagnosed with Sjogren's my POTS symptoms were acting up and I email rheum instead of cardio this time since we now know the cause. We decided to see if upping the prednisone would help and it did but prednisone side effects suck. I was actually doing okay till I had an endoscopy and they gave me an IV dose and then I didn't sleep for a week. Then last week I had a fever and need another stress dose which messed with my moods. Being a camp counselor who is having mood swings thanks to prednisone is not fun! For the few days after that dose everything seemed to make me irrationally annoyed, I try to pick and choose my battles with the 6 year olds but prednisone made that really hard, so I seemed to constantly be calming myself down in my head. I like to think I was at least aware of the fact it was the steriods making me angry and what the children where doing was not that bad and did not take it out on them.

This week has been a little better in terms of side effects but the weaning off the stress dose of 20mg to my current normal dose of 10mg has left me exhausted (yet still oddly wired?). To make matters worse I have also probably bit off a little more than I can chew. It is the first week of classes as well as the last week of camp. Since camp was really short staffed and I really need the money I agreed to work when not in class, which is most of camp hours. Besides having a night class yesterday and tomorrow I had the opening teachers meeting for Hebrew School today. Yikes. So I went to class, then work and camp then work at Hebrew school. By the end of the meeting I had stuff everywhere, my ride waiting for me, and the cap of one of my new pens missing.
Staedtler Triplus Fineliner 0.3 mm Porous Point Pen 334 - SB10
Look how nice they are!

In my defense the pens are a set that come in a case and need the cap to fit properly and my planner is already color codded. Also I am going to blame prednisone for making me crazy. On the bright side hopefully we can wean my pred dose at my rheum appointment next week. I am also seeing endocrine in a few weeks to deal with the whole long term steriod issues thing.

Lesson of the day- Prednisone makes Joan crazy but over committing herself makes everything that much worse and leads to freaking out over silly things.

College and Chronic Illness: Talking to your Professors

Another title for this post could be learn from my mistakes. My freshman year I did not inform my professors of my chronic illnesses until I am in the ER and could not make the deadline for two papers or to the respective classes the next day my first semester. Thankfully those professors were very understanding. You would think I would have learned but second semester I waited as well and found myself on the bathroom ground working on a final when I should have been in the ER because that professor was considerably less understanding although maybe she would have been had I mentioned something before that night. Anyway back to the topic at hand.

From my first ER trip in college, too bad it was far from my last...
First off as I mentioned in my previous post make sure you go to your campus disability office with a letter from your doctor explaining your symptoms and/or illness, what accommodations you need (my school asked if I need anything not on the list so it may have not been necessary but better to be over prepared than under), and make sure it is on official letterhead. Then they should be able to set you up with an adviser and put your accommodations into place.

Next the week before your classes start contact your professors by email. My school as an online portal for anyone registered with the office of disabilities that I can use to send a letter informing my professors of my accommodations. I can even customize the letter since I don't think my professors need to be aware my housing must have a kitchen and a private bathroom. Once they read the letter the system also sends me a notification to let me know.

Then I like to talk to my professors right after the first class. However one reason I do it so soon is I am typically connected to pumps that have a tendency to beep at the least convenient times, but I would say you should approach your professors within the first week or two of the semester. Depending on how much time you need to discuss your accommodations you may want to just do talk right after class or set up a time for you to talk during business hours.

Tips for the actual talk- first off remember you only have to share what you want to. The professors do not need to know why you have accommodations. I am a pretty open person coupled with the fact I actually have tubes coming out of me I have found it easier to give simple explanations of my medical condition but it you don't feel comfortable doing that do not feel that you have to or should. I like to point out which accommodations I am most likely to actually you (,my adviser set me up with a couple I probably will never need but said it was easier to start with them then add them later). I then reassure the professor I do my best not to use my accommodations and if I am out (one of my accommodations is to have more absences than generally allowed) I will contact a fellow classmate.

As a follow up I do try not to use my accommodations unless I absolutely have to and then I try to be as proactive and responsible as possible. I stay in constant contact with my professors, if I miss class I email them (in advance if possible), if I start to flare up a few days before an assignment is due even if I think I can make it in time I email a warning that I may need an extension. Once a few professors know you will not take advantage of your accommodations word will travel. Chances are you will encounter difficult professors once in a while but it helps when you have a department of professors or two that know you and can attest to you as a good student.

If any readers have any questions or their own tips please comment!

College and Chronic Illness: I am on Campus, Now What?

The first few days after moving in can be overwhelming for any college student but having a chronic illness can take it to a whole new level. Here are some tips to make your first couple weeks on campus successful-


  • Set up your medication at a close to campus pharmacy. If there is a retail chain that is both near your school and your home I suggest going there over student health. By using a chain pharmacy it makes getting refills at home or at school easier. 
  • Set guidelines and boundaries with your roommate(s). This is a good time to have a more in-depth conversation about your health and explain your chronic illness. Communicate how that may effect living with you, such as what times/how much sleep you need, if you have to be extra careful about being sick due to being immunosupprested, allergies, etc.
  • Before classes start walk through the campus and buildings to see where all your classes are. Make sure you know how long it takes to get to each class without having to rush of stress out. Nothing is worse than being late on the first day.
  • Once classes starts make sure you talk to your professors about your health issues and how that may affect you, remember you don't have to disclose why you have accommodations if you don't feel comfortable. My school sends an email to my professors that I control, like which accommodations appear on the letter sent to the professor and when it is sent. I like to sent it the week before classes start. Then after my first class I go up to my professor to either talk about my accommodations or set up a time during their office hours to talk about them.
  • Remember your self care routines! Try to stay on somewhat of a schedule, remember your meds, get enough sleep, and eat something that almost resembles a veggie. I know this sounds basic but especially in the first few days/week after move in but before classes start days and lights tend to get messed up and all norms that keep your body functioning get thrown to the wind.
Now take a deep breath and good luck!




Good Old Freshman Dorn!

A Pre Move In Check List for Chronically Ill Students

As I embark on my senior year in just a few weeks I realize I have almost made it. At this point in my life of balancing being a typical college student and battling for my health every day I feel uniquely qualified to advice incoming freshman on how to do college without totally neglecting your health.

Things to do in the weeks leading up to your move in date-
  • Decide on if you are going to see specialists as well as a PCP by your school or if you are going to continue to see your old doctors. Many factors may effect this such as how far away your school is to your hometown, if your new school is in a city (making it more accessible to good doctors), and how often you plan on visiting home. If you do plan on establishing yourself with new doctors you should be setting up appointments now because waiting list can be long and you want to be an established patient ASAP in case you have an emergency. If you do not plan on having a doctor near your school make sure to research student health and see what they are and aren't able to handle and if you can see a doctor when you get to campus to establish care. 
  • In case of an emergency figure out what hospital near your school can handle your case. I made the mistake on my first ER trip to go to the hospital affiliated with my school even though it was not the best for my particular situation. The closest may not always be the best. If you are going to see doctors in the immediate area know what hospitals they work with.
  • Talk to the office of disabilities. If you qualify for disability housing you obviously need to set that up before you move in (also know things like Celiac may qualify you for disability housing). Otherwise this may be able to wait until your first week on campus.
  • Figure out how your class schedule will work with your health. If you have morning stiffness you may not want to take an 8AM. If you have problems sitting for long periods of time you may be better off taking shorter classes that meet more often. If you cannot walk fast/easily do not schedule back to back classes that are located on opposite sides of campus.
  • Start a conversation with your future roommate. Depending on how sick you are and your daily routine it might be a shock to someone else who you end up living with. I just told me roommate my diagnoses prior to move in and had a bigger discussion when we met in person.
I am going to try to make this a series about chronic illness and college so let me know if there are any other topics you would like me to cover.

Freshman Joan Wishes You Luck!

Sjogren's Awareness Day

Today is Sjogren's Syndrome awareness day. Unlike other disease you will not see a lot of facebook profile pictures with a ribbon overlay or products in the grocery story with ribbons on their labels to announce a percentage of proceeds going to research. The majority of people diagnosed with the disease will probably stay silent. I however refuse to be one of them.

Sjogren's is one of the most common autoimmune disease, effecting an estimated 4 million Americans, yet most people have never heard of it and most of the people who have do not truly grasp the effects of the disease. I was one of these people until recently. All I knew was Sjogren's is an autoimmune disease that cause dry eyes and mouths and possible some minor joint pain. I did not know that is could cause enough joint damage to result in surgeries, I did not know if could cause autonomic neuropathy to the point of needing a feeding tube and central line.

When I was diagnosed with Sjogren's 6 weeks ago I was shocked because I did not know it could cause the type of destruction my body has been through. And that was just the problem, no one else seem to realize it either, especially at such a young age, after all Sjogren's is supposed to effect women in their 40s and beyond, my body missed the memo. Since its so rare no one ordered the one test that could tell us exactly what was wrong and why my body had been self destructing. 

Turns out dry eyes and dry mouth are not always the first symptoms of Sjogren's, sometimes they are proceeded by joint pain and/or neurological manifestations. Turns out Sjogren's can and does effect children. After I was diagnosed I discovered it turn's out Sjogren's can be a very serious disease.  

Maybe my story can help others, create awareness.

A New Diagnosis Means a New Treatment Plan

A little over a week after Sjogren's was confirmed I had an appointment with my rheumatologist. My head was filled with questions and possibly a little too much online reading (however I have graduated from google and now use my college's online database to read medical textbooks). I had a list of questions on my phone I wanted to ask and did get to most of them. However the ones I missed was due to me already feeling overwhelmed and wanting to focus on specific things, not because the doctor rushed me which is a nice change.

The most important part of the appointment was figuring out a treatment plan. My rheumy asked what the most pressing symptom is and obviously it is the autonomic nervous system issues (autonomic neuropathy). He thought the best treatment option was a medication call azathioprine (Imuran), which is an immunosuppressant drug. However before I could start I need a blood test to see if I had the enzyme needed to properly metabolize the medication (10% of the population is deficient which can lead to bone marrow failure).

After 10 years of symptoms I was so ready to start actually treating the thing that has been making me so sick that waiting a couple more weeks seemed like agony. Thankfully the blood test came back positive and I was able to start azathioprine almost a week ago. We also upped my prednisone dose. While that was the last thing I wanted to do and have also really been struggling with POTS thanks to the heat and if the root of the problem was Sjogren's prednisone could help and it really has.
If getting better means spending a few nights on the bathroom floor I can handle that

All the medication has been a struggle to adjust to but I am getting there. I have dealt with some side effects from the azathrioprine which have just reminded me of the really bad days of gastroparesis prefeeding tube. I am hoping they will get better as time goes on but I an increasing my dose Friday so that should be interesting. The increased prednisone dose has helped with POTS symptoms and gastroparesis symptoms when the azathrioprine isn't making me too sick to eat much. However I have been a bit wired and irritable from it but both those things seem to be getting a bit better as I adjust. Now I just have to wait a few weeks and hopefully the autonomic neuropathy will start to improve.

Not Fitting in to my Disease Community

About a year ago I was at a rheumatologist appointment and we were discussing a new symptom, I don't even remember which one it was, my rheumatologist said Lupus could cause it but for what ever other reason I did not have Lupus. She said "Usually not having Lupus is a good thing, but at this point I am sure you just want a name." In that moment I finally felt like someone finally hit the nail on the head.

I never wanted to have a lifelong possibly life threatening autoimmune disease. Yet that was not a choice I had. As my symptoms progress and have had more and more of an impact on my life and caused me to grow up in a way that has made it hard to relate to people my own age sometime I earned for a group where I fit in. As the picture of what I had planned for my future changed I felt a need to talk to someone going through the same. Every time someone asks about my feeding tube, central line, and any other parts of my health I just wanted a simple answer.

If I had to live with all the challenges and complications my health has caused I wanted a name as to why. I wanted support groups and walks. I want to participate awareness campaigns and to read about the latest research. If I was going to continue to fight with everything I had how could I fight against an unknown villain?

As I mentioned in my last post I had confronted the fact I might not get that overarching diagnosis. I guess I could have live my entire life that way but there was a part of me that would always yearn for a disease community to relate to a fit in to.
Look! Such a Pretty Awareness Ribbon!

When I was finally diagnosed with Sjogren's I thought I would finally have my community, my support groups, the research, and the walks, all of it. However when going on Facebook groups and forums, even looking through research studies I did not have the sense of belonging I had expected. I had read that Sjogren's generally effects woman in their 40s and 50s, I guess I just did not understand quite how few people my age had it. I knew my ANS manifestations being so severe that I have a feeding tube and central line where not common but I did not realize I would only be able to find one other person with a feeding tube in support groups of thousands of Sjogren's suffers, and no one else seems to have a central line. One person even told me I was too sick for it to be caused by Sjogren's, it must be a misdiagnosis because my level of severity was not possible. Part of me thinks she was upset to think that a disease we share can be so damaging.

Once again I cannot seem to relate to anyone else in the community. I am so much younger and so much more severely affect it seems. It is odd because I have never thought of my self as too young to be sick or even sick really. I am me and my health is just not ideal. Unlike before I feel a little more empowered. I can become an advocate and show people all the ways Sjogren's can affect your life and that it can in fact be a life threatening disease. I think there must be other Sjogren's suffers who are like me and I plan on going out to create a space for them.

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!

Can We Banned the Word Inspiration Please?!

  


A couple weeks ago I was hospitalized for a port infection and there went another week of class, to make a grand total of three full weeks of classes missed this semester not including the here and there appointments absences. As I was meeting with a professor this week they mentioned what an inspiration I am to them and all my classmates. First off that always makes me feel super awkward, how do you reply to such a statement? However that's not even the reason I hate that word so much.

I hate the word inspiration because of how people use it. If someone does something extraordinary for example raises millions of dollars for a charity or starts their own charity that IS inspirational.  When the work inspirational is used to describe someone who goes about their life despite crummy circumstances that is not using the word properly. When people use it to describe me it makes me feel like they find my life depressing, like the fact I even bother to get out of bed should be celebrated. They are implying if they had to live in my body an deal with my illness they would not get out of bed.

Quite frankly I like my life and I have goals just like I would if I was not sick. Yes I may have extra challenges to get to my goals but if you do not have goals you are working towards in life what is the point? Why does society expect me to just stop trying? Or deem my life depressing? Its like I am supposed to be sad about my life an mad at the world. How would that help me?

I challenge you to think the next time you call someone inspirational, what are you really implying about their life? Are they doing something extraordinary? Or doing something ordinary under tough circumstances? Because if it is the second case they may not appreciate being called an inspiration.
Life with a Flare's Profile Photo
Being in the hospital isn't all bad, I got to meet Charlie Puth

The First 1/4 of the 2016

I just realized that 3 months have pasted since I last posted on here. They have been a crazy 3 months at that. In my last post I had mentioned uncertainties and hanging on by a thread as I was not tolerating my feeds. I ended up spending a good portion of January inpatient due to ever worsening GI motility. I had some pretty extensive testing that did not give us any answers, which was frustrating. I was finally discharged not tolerating any better but forcing myself to push on with feeds because I wanted to get out of the hospital. I also had to increase my IV fluid to 1-2 liters a day. I now run fluids and/or feeds 20 hours a day, but thankfully I am back up to a healthy weight.
I was at such a slow rate at one point in the hospital they used a med pump instead of a feeding one.

A few theories were brought up by a GI motility specialist I am now seeing in addition to my normal GI, one being there is an autoimmune issue and the others are all genetic issues which can be contributing to my autonomic nervous system dysfunction (aka gastroparesis and POTS).

I also saw an adult rheumatologist for the first time this week. I really liked him and even though I am sad to leave my old peds rheumy I am glad I have found a good adult one. He is changing my diagnosis. Right now he put Undifferentiated  Connective Tissue Disease (UCTD) in my chart but that will probably change in the near future when some of the test he sent me for come back. The first one I am having an about a week and a half is a lip biopsy to check for Sjogren's Syndrome. He said there is probably only a 10% chance I have it but it can affect the nervous system and if that is the problem treating it will not only help my autoimmune problems but also the ANS ones as well. He is also sending me for skin biopsies of sores I get on occasion but we have to wait for one to pop up before we can look into that and that would be testing for Behcet's disease. Lupus is also on the table, The last thing he did was look at the capillaries in my cuticles to look for signs of Rayaund's damage which not only did he find but he let me look at. While this is not important in terms of treating that condition it may be a symptom of another autoimmune disease such as lupus.

The last major thing that happened this week was some pretty serious new GI symptoms that may mean I am bleeding somewhere in my lover GI track. I was pretty freaked out when it first happened but it seems to be getting better so hopefully it will go away but I am getting some stool test to make sure nothing new is happening,