Life with a Flare

It's been six months since I last updated my blog so this will be just an update post. I did not even do a year in review for 206, probably because of the last two months being so rough on our country I could not bring myself to think about it. Since I left you a lot has happened. I finished my last semester of college during which I student taught and then did the whole graduation thing. I also have a lot going on medically. Student teaching is the reason I did not really blog this past semester. I loved it so much but it was really hard and exhausting. All my energy went in to my students and my assignments as I had to build my senior portfolio. I still cannot wrap my head around the fact it is over and I am a college graduate. Somehow during student teaching I stayed fairly healthy. I only caught one upper respiratory infection. Of course that was a whole ordeal with breathing issues and a fever which sent me to the ER and an overnight hospital stay. However I only missed ...

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 ...

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...

   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 ...

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 ...

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...

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...

If you have been arounds this blog for a while you know at the end of the year I choose a song to go with the year. This year's song is Be Okay by Oh Honey.  I choose this song because I feel like it reflects the attitude I have had the year. Even through hell this last year it has also been one of if not the best year of my life. Almost all the good things that have happened have somehow been results of my health. In the beginning of the year I was newly diagnosed with Celiac disease so I went to the campus dietician. Little did I know at the time what a major role she would play in my life. A couple weeks later I started babysitting her kids 4 times a week and her family became my second family. Not only that I know if I ever need something I can ask her, she has taken me to the ER and I have stayed at there house when I wasn't feeling good. I can not thank her and her family enough for how they take care of me. The same time I started working for them I was asked ...

During my last Rheumatologist appointment at the very end my doctor, who spends everyday seeing children with rheumatic conditions, gave me the most heartbreaking look of pity ever saying that I need many doctors just not her right now. This was not how I pictured the appointment where my joints were finally doing well to go. In my head I figured if I ever got to a point where I could go a full year without seeing a rheumatologist it would be a happy occasion. This had been the appointment I had been waiting for and my joints behaved as I wanted them to. Yet the look the doctor gave me at the end is what is ingrained in my memory. Yes, I am sick. No, I do not enjoy getting about 95% of my nutrition through a tube. Yes, I wish I could reliably stay vertical whenever I please. Yes, I do miss gluten sometimes. Heres the thing though, even though I wish my health was different, if changing it meant I risk changing other aspects of my life I would keep everything the same. My life is pr...

Remember last year when I started posting really sporadically because I was too busy living life? Well I wish that was the reason for why I haven't been posting lately but unfortunately I have been busy being sick. I have spent too much time at CHOP. Typing it all out would take a while so I am going to do a by the numbers post for the semester so far. 1 Hospital Admission 1 Gastric Emptying Study 1 DEXA Bone Scan 2 NJ Tube Changes 2 EKGs 3 Different NJ Tubes 3 ER Trips 3 Doctor's Appointment 4 Abdominal X-Rays 5 IVs 5 Trips to Interventional Radiology Countless Episodes of Tachycardia From My 4th Trip to IR At Least the X-Ray Rooms Look Like This ER Selfie! Yes I Spent Two Days in a Row in IR Just Getting Some IV Fluids! Sitting(top) vs Standing(bottom)...Eeeek! Two say I am excited for my cardio appointment is an understatement! 11 more days!!!!

Since being diagnosed with Celiac in December leaving my dorm has taken more preparation than it used to. Every meal and snack has to be carefully planned out., each restaurant research, all snacks packed. So going to Celiac Education Day at CHOP was quite a treat, I only had to bring my cell phone and wallet with me. For the first time since being diagnosed with Celiac I didn't have to worry about it, irony at its finest. The day was amazing. I got to play with adorable children, one three year old informed me that she had Celiac and a wheat allergy, and was very excited to learn that I have Celiac as well. Even more exiting I could eat everything! There was a ton of samples! There were a few things that stuck out for me. First of course were Sweet Note Bagels . As a Jew who grew up right out side NYC, bagels play an important role in my life. Between finding out I probably had Celiac and the final blood test the two things I got while in NYC was a bagel and a black and white ...

Celiac Update I started meting with the dietitian on my campus and she is really great (I actually babysit for her kids now). She had me keep a food journal, and we saw I was not eating enough. I added in snacks, I try my best to get two in a day but some days just go better than on that front. I can't seem to break 125 lb, which is okay if I maintain it but not id I lose anymore weight. I also met with Disability Services on my campus and was able to get my meal plan down graded so I am mostly cooking for myself. I was also able to get disability housing for next year so I am getting an apartment with  full kitchen. Last week I saw my GI. She prescribed Periactin to help my nausea (which is why I have so much trouble getting enough food). I am only taking one pill a day right now but we may up it this week. The reason I started with such a low dose is because it causes severe drowsiness. I was actually falling asleep in class the day after my first dose as I was drinking cof...

I haven't ha time to write in forever. Over winter break I was working two jobs (one was full time and one was part time) so I have barely had time to breathe. I am happy to be back in school I actually have more free time to just hang out. In good news I think I forgot to write that back in December my OS released me from his care, yes that means no more appointments with him or at HSS. I can't believe that after all I have been through I am done with Hospital for Special Surgery. I definitely will not miss that place, although the doctor did add something about calling him if my knee gets worse...you win some and you lose some. As far as the whole Celiac thing is going, that has become quite an adventure since getting back to school. My school has a gluten free area but it hasn't been stocked since getting back from break, so each time I try to get food I have to chase down someone to get me some frozen meal and then I have to microwave it, the whole thing is really f...

Recently I spent about 2 or 3 months without caffeine, which was no small feat for someone who has lived on coffee and tea since about 6th grade. Also college just works better when drinking insane amounts of coffee. I am going to divide my tips into energy tips and drink tips because these are the two challenges I faced. Energy Tips As a college student who's first class starts at 9AM most day and whose last class does not end till 8PM I have a really long day. Throw in already reduced energy levels because of chronic illness, pre going caffeine free that stuff was my life line. Here is how I managed not to fall asleep in class- Naps, naps, and more naps. Every afternoon I took a nap without question. It was all about timing. I never took naps past 5 and always had at least a half hour between waking up and class. Snacks that gave me energy, like nuts (although sometimes supplemented with twizzlers on occasion), this was especially important if I was trying to stay up late ...

I had a plan for this semester, I was  going to do well in all my classes and actually manage to get to all of them. This year would not be a repeat of senior year where I missed more school than possibly all the other years of my life combined. Yet I am just making it under the limit for allowed absences in most of my classes and I have had to get extensions on assignments. Thankfully all my professors have been very understanding. I think maybe I should have gone to disabilities services to get accommodations, but as my rheumatologist wanted me to be I was determined to make it to class even while flaring. I did just that, I even went when I had a normal person cold! So had did I get to this point, where I am hanging on by a thread? Chronic illness doesn't allow for one to plan ahead, even when determined. I generally have two rules when it comes to missing class, I have to be in the hospital or unable to walk, sometimes both. So between a few last minute doctor appointments an...

On Sunday my stomach pain started to get worse than it had been, and continued to worsen until finally on Monday it was more than I could handle. My RA went to get some EMTs but instead found police. The police wanted my to take an ambulance to the ER but I was not going for that, because there is a fine for the ambulance because it is assumed you are drunk. The police kept insisting I may have appendicitis and my appendix may burst, I tried to explain my pain had already been diagnosed by a doctor and it was not in fact appendicitis. They finally made me sign a release saying I refused to be taken to the hospital in an ambulance. Next my RA hailed a taxi and we took that to the University Hospital. I was admitted as soon as we got there. And was treated to gastritis of course (and not even checked to appendicitis). First I was given Zofran, which help with my nausea but not pain. A while later I was a GI cocktail, which was bubble gum colored and tasted rather vile. The GI cocktail ...