Life with a Flare

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...

Every 6 months I go to my PCP for an appointment (unless a problem pops up prior to that), I call it my "I am still not dead" appointment, as normal people only have to see their PCPs every two years for a physical. Today's appointment led to some great conversations. Let me start out by saying one of the things I really like about my PCP is his honesty. We started out the appointment by him saying "Your vitals aren't horrible but..." apparently my blood pressure was pretty low. This isn't uncommon for POTS patients but as far as POTS patients go I tend to run on the high side so the reading (which I don't quite remember but was 90something/60something) was low for me especially since it was the day after an infusion. Later on during the appointment we talked about what specialties are being transitioned from peds to adults. Of course my adult GI disaster was talked about. Long story short the adult GI I saw wanted to un-diagnose me with everything m...

As I previously state PT has been a struggle. It's been almost 2 months since I started and I haven't gotten very but at my PT pointed out today was only my 5 visit and at least 2 of them where washes due to other health issues. I did have to call my Rheumy's office since I was supposed to call a month in...oops. She decided I need to have joint ultrasounds, which I got done today. If they don't show anything I am being sent to MRI, but I am not sure for which joints because having 4 MRIs doesn't sound right. Either way I do not want MRIs, my joints have been through a lot so there is a good chance they might show something but will it show the actual source of the issues? Definitely going to be pushing spending more time in PT. Today in PT I was informed that my left glute is not firing. I shouldn't be surprised, this happened to my quad after my knee surgery, but that was only 2 weeks later, not almost 2 years. So basically most of my current joint problem...

Dear Senior Year Gym Teacher, We only met briefly on the first day of the semester, then for the next third of it the seniors went to health class during the gym period. Our next encounter was at a meeting with my parents and all my other teachers as well as an administrator about my upcoming absences due to a hip surgery. You were annoyed to be there clearly. Well I was annoyed to be missing part of my senior year due to surgery but if your attitude stopped there I would have been okay. After the seniors came back from health you asked anyone who had a doctor's note to come speak to you. I was very proud to walk over without the assistance of crutches for the first time in five weeks, a whole week sooner than predicted. The nurse had already emailed you informing you of my inability to participate in class. You asked me if I exercised outside of class, apparently you were unimpressed with my new found ability to walk. "Yes," I responded with a smile, "I go to ph...

In the past couple months of my life I have felt like I have been trying so to get my health in order but the harder I try the worse it goes. At my last rheumatologist appointment about 2 months ago between my knee pain and lost ROM in my left hip we decided maybe it was time to try PT again. I was ready to hit these problems head on. Prepared to make PT work. It HAD to work. The other options weren't pretty. If it didn't I would probably be sent for a knee ultrasound (that isn't the bad part, and then either Prednisone (a.k.a. Satin's Tic-Tacs) or even worse sent back to ortho. Last time I saw my ortho he told me to come back when I was ready for knee surgery. I went to my PT evaluation hopeful. I soon found out my PT also had a hip scope for FAI. Everything seemed to be going well. I made a lovely sticker chart to keep track of ding my home exercises everyday. It had glitter! And owl stickers to go on it! What more do I need to keep me on track? My second...

My Lungs Got a Close Up and I Got to Choose the Gown Color Every semester I seem to be muddling through at the end. In fact this trend pre-dates my college career. December of senior year I was diagnosed with Uveitis. Two days after graduation I had hip surgery, meaning the two weeks before that I was medication less, not pretty. Then in college I was diagnosed with Celiac about 5 days before my first set of finals. Spring of last year the week before finals was when erythromycin stopped working and my downward spiral towards the feeding tube began. This past fall semester my POTS was so bad during finals I thought I was going to pass out during my math final, I lasted until 2 hours after it. In the ER I found out I at least got a 90% on the final and the doctor high fived me.  So in true Joan fashion something had to go wrong in the past two weeks of my life and sure enough something did. Unlike in the past I was much more blindsided by it. With past finals weeks the healt...

Being chronically ill in college comes with many obstacles. One of the hardest ones is avoiding normal people illness. Being an education major makes this even harder. I spend lots of time in elementary schools and so do most of my friends do as well. It is safe to say there is always something going around our classes. On top of that no one ever wants to miss a class especially since we are on a Tuesday/Thursday schedule to accommodate our field placements (which I totally get because I hate having to catch up what I miss). This leads to my classmates coming in to class sick all the time. Once one of our professor even came in and told us she had a low grade fever. For me this is really scary. Let me give you a little history of what has happened to me when I have gotten normal people sich since being chronically ill. In high school one I had a small cold or bug that was only bad for a couple days but then triggered a had joint flare, forcing me to miss multiple days of school (no m...

Dear Illnesses, Enthesitis- You are my oldest constant companion. For years no doctor could find you and yet I was well aware of your presence. At age 10 you started to attack me, stripping me of my active lifestyle. For all you took away from me you have given me just as much if not more. You taught me how to fight and that doctors do not always know best. You taught me perseverance from a young age. Without you I do not think I would be able to handle my other health issues. Thank you for preparing me for the world. I wish you waited a little longer to show up but I am glad you came. Uveitis- You took me by surprise, possibly the only condition to accomplish that. I will never forget the day you were found in my left eye. I was scared and not sure what lied ahead. I still have a fear of eye drops and all things near my eye thanks to you. You taught me sometimes I have to do things I hate but thats just the way it is. AMPS/RSD- You were the first to affect my nervous system, for...

Remember that time I tried to blog for a week straight and failed miserably? It wasn't totally my fault, I ended up finishing out feeding tube awareness week at CHOP due to an out of place tube, how ironic. On the brightside Valentines day in the hospital is now something I can check off my bucket list along with Halloween and my birthday. I haven't talked much about my attempted transition to adult care. So far I have cardio and a GP and I am not getting very far with the rest. My peds GI had mentioned to me that usually they transition patients at the end of their first year of college but I had been really sick and was still pretty sick so I did not have to transition quite yet. She did want me to see an adult GI at Temple Hospital because he was the top doctor in the country for gastroparesis and might have options not available in pediatrics, and possibly at some point I could transition. He had one non FDA approved medication I tried and failed and then he wanted me to ...

What Joan couldn't manage to post everyday for a week? Shocker right? 3 for 4 isn't bad though. So the topic I missed was feeding tube myths! Boy have I heard a lot of those! Myth 1: You need to be in the hospital if you have a feeding tube. (Thanks Red Band Society for keeping this one alive and well) Truth: Actually feeding tubes keep people out of the hospital. Feeding tubes allow people who are unable to eat enough food orally to stay out of the hospital. If you are like me and need constant fluids as well as the calories then if the feeding tube is unusable even for a few hours you end up in the ER but as long as the tube works you are good to go! Myth 2: Only babies, the elderly and coma patients have feeding tubes. Truth: There are actually over 300 reasons a person may need a feeding tube. Many of these can affect people of any age and they do not always look sick. Myth 3: You look too healthy to need a feeding tube. Truth: Many people with feeding tubes loo...

Certain conversations will forever be ingrained in my memory, one of them is the conversation that I had with my GI on July 9th. After erythromycin had stopped working we were scrambling to get my symptoms under controlled. Reglan another gastroparesis med (that had many scary side effects) failed to work for me and we had maxed out my dose of Periactin. I was only getting in about 300 calories a day and feeling it. To add to the mess I started not tolerating ensure. And trust me after throwing up ensure you will never want to touch it again. After increasing my dose of Periactin we gave it a few days to kick in but by July 9th I had to call and after explaining where I was at with the nurse I received a call back from my GI within an hour or two. Whenever a doctor calls you back that fast it is not a good sign (although in all fairness my GI does usually call my back in 24 hours). She asked how I was and I as always replied "okay." "Well it does not you are doin...

Today is the beginning of feeding tube awareness week! A year ago if you had told me I would be feeding tube dependent in less than 6 months I would be feeding tube dependent I would say that's crazy. Anyways here I am and its not super scary like one might think. Day 1 : Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary. I am tube fed because I have gastroparesis and dysautonomia. Gastroparesis: Delayed stomach emptying, which means I can not tolerate normal amounts of food because it doesn't leave my stomach as fast as it should. The symptoms include feeling full, nausea, and vomiting (there are many others, these are just the ones I deal with the most). Gastroparesis is caused by nerves not firing and telling the stomach to empty. Due to gastroparesis I can only consume a few hundred calories a day so I receive most of them through my tube that goes into my small intestin...

Many people have asked me how and why my cardio decided to do IV fluid therapy. I will preface this with I have a very specific set of circumstances so what works and doesn't work for me will not be the same as for others. We have known for as long as I have had Dysautonomia symptoms that IV fluids made a huge difference. When I first fainted during my hospital admission in July the doctors immediately upped my fluid rate from 100ml/hour to 150ml/hour during the day and I had no more issues. Furthermore any time I have been put on IV fluids my heart rate stabilizes and doesn't jump when I stand. During my hospital admission in November I was actually kept an extra night for fluids because my body just couldn't seem to wean off them. In the recent months I have been in the ER about every other week for fluids. So while I never did a trial run like some people have ask, we knew IV fluids would help me. Fluids was not the first treatment option I tried and is not the only ...

Once upon a time this was a blog I updated on my health multiple times a week. I now realize since the whole NJ tube thing I have not given an actual update on my health. A lot has happened in the last few months to say the least. I think the best way to go about this would be to go by specialist: Rheumatology- As I mentioned a few post ago at my last appointment with my rheumatologist my joints were doing amazingly and I don't have to go back for a year. As of now I am only on celebrex for my joints, which I was really hoping to get off of but since sulfasalazine clogged my tube that went instead. The last week or two my left SI joint has been a bit stiff and sore but I am hoping tylenol will be enough for it. GI- In September I saw a GI at Temple Hospital who is supposed to be the top doc for gastroparesis. He put me on domperidone, which is not FDA approved and did not help. The only thing he had left for me was an experimental surgery with a 50-60% success rate so I am taki...