Life with a Flare

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 ...

As I mentioned in a previous update, a couple month ago my joints started flaring badly. This is definitively on of the worse flares I have ever been in if not the worst. After a burst of prednisone did not stop it (well it helped till I weaned off of it) I went to see my rheumatologist. At the appointment after describing my symptoms she mention Enbrel but wanted to do a physical exam first. If there was obvious signs of inflammation on the exam she would prescribe the medication but if not she was going to send me for an MRI to look for inflammation first. Well by the end of the exam there was no question my joints were not in good shape, Enbrel was prescribed. We wrapped up the appointment by adding back in some lower dose Prednisone as well. Then the nurse came in to teach me how to do the Enbrel injections, super fun. Overall doing the injections is actually relatively simple. Compared to an Infusion the Enbrel Supplies are Pretty Simple  Now to get down to the...

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...

I do not usually talk about God here or a lot of places outside my Hebrew School classroom. I have never prayed to God to be healed, that's not really my style. To be honest some times I get mad and ask why me? But it is silly to dwell in these thoughts for long. Growing up I was always taught God has a plan, we just might not understand it. Human cannot see and know everything the way God can. Then when it was my turn to teach I had the opportunity to teach my students about partnering with God. Both these ideas seem to play a major role in my own relationship with God. I really do believe God has a plan for me and always has. When I was in elementary school I wanted to be a pediatrician, around middle school I had no idea what I wanted to do with my life, and by high school I discovered I wanted to be a special education teacher. However I still sometimes wonder if I should go into health care. Since I started spending so much time in a Children's Hospital I actually disc...

As I prepare for an upcoming hospital stay which will hopefully go as planned and only be two days I asked a few of my chronically ill friends what are their hospital essentials. Clothes Underwear- I always bring a bunch of extra pairs and I go for pretty but with plenty of coverage because at some point during the stay you will be on a gown. (Although as I go into below still bring some hospital appropriate outfits) Sports Bra- (This one is only for those with boobs obviously) Nurses and doctors will be in your room at all hours so you will probably want to sleep in a bra. You also might have a test of procedure where you need to remove all metal so steer clear of the under wire. Comfy Pants- I go for either yoga pants or pajama pants (bonus points for fuzzy PJ pants). Even if your hospital does make you wear a gown many times you can get away with your own pants. My doctor even lets my wear my own yoga pants for endoscopies. T-Shirts- Personally I like soft closer fit...