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was rough to put it mildly) and the more theoretical looming idea of the possibility of the Affordable Care Act being repealed.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.

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!
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.


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!


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.




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.
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!