Life with a Flare

I have now actually completed both of my Rituxan infusions for this round. This was probably the most frustrating round as I was trying to figure out how I would feel after each infusion so I could plan but everyone I talked to seem to have different experiences with the medicine. SO my disclaimer is my experience may be different from yours. Infusion Day  Both infusions were scheduled for 8AM since this medication takes a pretty long time to infuse and if there are any reactions it takes even longer so I was the first person at the infusion center. The infusion center is the same one I used to go to for IV fluids before I got my port 2 years ago (although it has since moved from a building across the street to inside the hospital) so I knew a good amount of the nurses and it was nice to catch up. One of the new nurses I knew as well because she was an RA in my building freshman year, small world. For the first infusion my port was already accessed but for the second infusion...

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...

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...

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 ...

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...

At the end of every year I look back on the year and choose a song that was my anthem. This year although cliche Fight Song by Rachel Platten is the most fitting. I look at the last year and realize even though I encountered some health obstacles from lung issues following a cold to a joint flare that hit me off guard, overall my health was pretty stable and I had a lot less ER trips and hospital admissions which must mean something. Some milestones for this year including my first pulmonary function test, trying and failing a biologic, and having my port placed. Some non medical mile stones include my first trip to the shore with the family I nanny for, surviving two more semesters of college, signing my first lease, getting in to an accelerated master's program, and going on two school paid for trips to Florida including my first professional conference and a college football bowl game. I have fought a lot to get to where I am now but I am only holding on by a thread. I am ...

At the end of August I had a Bard Power Port implanted in my chest. After 8 months of weekly schedule infusions and about a year of have almost weekly IVs scheduled or not my veins were becoming less and less usable. I was exhausted too. I was exhausted from my weekly trips to the infusion center, in addition to my normal medical appointments. I was exhausted from still crashing only a few days later from POTS. And I was exhausted from the ER trips that happened when I crashed particularly hard. My cardio did not want me to have a central line but when I came to my appointment mid-August the PA saw my arms that were so beaten up from the failed IV attempts and blown veins coupled with exhaustion from my most recent ER trip and a port was ordered. The port surgery was at the Hospital of the University of Pennsylvania (HUP), since that is where my cardio is. Unlike CHOP they were not as familiar with POTS patients (ironic since that is where I am treated for POTS), so they did not give...

Remember that time when I used to blog? Well I am going to attempt to do that again. Lots has happened since my last post and I am not sure how to fit it all in but I will do my best to try. On the POTS/IV fluid front I finally got a port! This was very exciting since it was taking multiple tries to get IVs in me more often than not. I am also able to get IV fluids 3 times a week at home now and if I need an extra one I can do it myself with no ER needed. The port probably deserves it's own post, but in short I love it. My Port is a Pretty Purple! Unfortunately after over a year of pretty calm joints a cold triggered a major flare. My joints are currently worse than they have been since high school. My rheumy was hoping a burst of Prednisone would calm everything down, and it did till I stopped taking it. So her office managed to fit me in for yesterday and she put me back on Prednisone and prescribed Enbrel. Enbrel in a biologic medicine that is taken by injection once a...