Life with a Flare

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 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...

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...

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 ...

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...

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...

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!!!!

My NJ tube and I have a complicated relationship. It is really easy to hate. After all who wants a long tube shoved through there nose, down their throat, all the way into their small intestines? Not me for sure. Its a nag, uncomfortable at times, and its a lot of effort. But I am getting 1,800 calories a day! I know that may not sound like a big deal but it is huge! Yep, that's me filling up my formula bag while standing on line for a Passenger concert in the middle of Central Park. I don't talk about calories on here to often, but I will try to put things in perspective. So most food labels go on the assumption an average person should eat 2,000 calories a day. According to the CHOP RD (registered dietitian)  I personally a supposed to get 1,800. When I was first diagnosed with Celiac I had a feeling I was not getting enough, I just had no appetite. When I went to see the campus RD she had me keep a food journal for a few weeks. I was getting 1,000-1,400 calories a day ...

When I left you (a long time ago, I really need to blog more) I was getting by, just barely but still. Since then things have gone down hill and fast. About a little more than a month ago the Eythromycin I was taking for my gastroparesis stopped working. The vomiting was back and it was all sorts of horrible. We upped my Periactin dose to no avail. Next we scheduled a upper GI series with small bowel follow through to double check gastroparesis was the culprit. The last ditch attempted was trying Reglan, a drug that passes through the blood brain barrier which gives it a long list of scary side effects, but it didn't help. Day 1 With my calorie intake down to 300-500 calories a day and not being able to stay hydrated my GI decided I needed to go to the ER and be admitted. So last Thursday my mom and I drove to CHOP in Philly. We got to the ER at 6pm and I was admitted around 10pm. In the ER they started an IV and gave me a bolus dose of fluids. My GI wanted to try two days of...

As you may remember a few months ago I started to run. My new year's resolution was to run a 5K or at least start training for one. It took till February to start out on that goal but I did, and I was even doing well for a while. Then that nasty infection hit right after spring break. I tried to keep running but it didn't go so well. I had to create a no running within 48 hours of vomiting rule. Yeah that is a thing. Well almost 2 months had gone by and between my schedule and regular vomiting and dehydration I hadn't been on a run. Since I had to stop taking sulfazalazine I had notice more stiffness in my joints and decided I needed to go for a run. I started to prehydrate with some Gatorade. I went about 1.25 mile and felt good. Post Run Selfie and Starbucks Two days later I had a final in the afternoon and was feeling stiff so I decided to go on another run. I had a light breakfast in anticipation and once again prehydrated. Right before I hit the 1.25 mile make ...

There is never a dull moment in my life, although I would not mind one. The latest chapter in the saga of "Joan's Body Doesn't Work" my stomach symptoms did not go away like I thought they head. As the pain and vomiting continued it was clear they had no intentions of going away so my GI ordered a gastric emptying scan. What that entailed was eating radio active eggs and then lying on an x-ray table for 2 hours (Which my joints did not appreciate) while it took pictures of my abdomen every few minutes to see how fast my stomach is digesting food. At least I got to watch MU during the scan. I find the fact I get a sticker for radiation exposure ironic. A few days later my GI called with the results, apparently my stomach is not emptying fast enough. She thinks it was caused by the infection I had and will go away in 8 weeks (even less at this point since that was a few weeks ago). She prescribed a medication called erythromycin which I take about 15 minutes...

Two weeks ago I started to go to the bathroom like 5 times a day, all the food I was eating was going right through me. The whole things was unpleasant to say the least. I was constantly battling dehydration, and barely winning. With Gatorade on my side I survived (on a side note as a child I was only allowed Gatorade when I was sick, so I associate it with stomach bugs). By the end of the week I was a bit concerned and after some telephone tag with my GI's nurse I had an appointment first thing Monday morning.  Gatorade and I have a love/hate relationship. At my doctors appointment we decided to run a bunch of test. So far only my blood test came back but so far so good. Celiac panel was clean, no signs of ingesting gluten. No indication of Crohn's (which was the worse case scenario). My white blood cells and platelet counts were both low, so the guess at this point is I have an infection and it trigger my regular symptoms to flare. On Monday my GI also advised me to cu...

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...

Two little words that mean yet again my immune system still hates me. Apparently attacking my joints and eyes was not enough so it decided to also attack my small intestines. At least after months of stomach pain, more vomiting than I care for, a late night ER trip, a couple blood test, the mis-diagnosis of gastitis, and finally an endoscopy there maybe an answer for my symptoms. Yes, I said maybe. As with everything test I have done of course nothing came back clear. 3/6 of the biopsies of my small intestines had signs of Celiac and my Celiac panel came abnormal but not negative. Between my abnormalities and symptoms my GI decided I probably have Celiac Disease and need to start a strict gluten free diet and in six months I need to have another endoscopy to see if my small intestines are healing. While I generally try to avoid anesthesia (not doing such a great job of that this year), the endoscopy was actually not that bad. They didn't even put the IV in m arm until I was out...

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 ...