Life with a Flare

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was rough to put it mildly) and the more theoretical looming idea of the possibility of the Affordable Care Act being repealed.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

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

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

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. Th

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 wr

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

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 bee

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 s

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 h

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 wee

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

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 t

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 a

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 couns

   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

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 contrib