Be Okay 2014

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 to take over a 2nd grade Hebrew school class at the Hebrew school were I had been substitute teaching. This is a big deal for me. I love working there and it looks amazing on my resume. In addition the faculty I am apart of there has been so supportive of all my health struggles.

Over the summer I worked at the same preschool I have worked at in the past. The director has served as my mentor. She has also been chronically ill her whole life so she truly gets it. During my hardest times she provided me with incredible insights that have shaped my attitudes towards my health and how those around me deal with my health. We both know this coming summer I will need to stay in Philly to be near my doctors but leaving the preschool was probably the hardest part of my decision.

During my summer hospital stay I met some of the most incredible people. Towards the end of it I met Anna. She has been through so much at such a young age she proves to me it is possible to smile through everything.

Finally this semester has been a whirlwind with lots of hospitalizations and ER trips. By some miracle I made it through with the grades I needed to be able to get in to the program I want to do. I served on a committee for HootaThon, a dance marathon that raises money for CHOP. I also had the chance to speak at it and a high school dance marathon which was an amazing opportunity. 

I am so thankful I have been surround by so much love and support in the last year. Those around me have taught me how to be strong. I would not trade in the bad because with out the bad I would not of had the good.

Why I Should Not be Pitied

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 pretty darn good. I am a college student that loves my major. I am working towards my dreams, getting closer everyday. Unlike many of my friends who spend hours looking for jobs to no avail, I practically fell into two jobs, both of which I love. One job I would have never gotten if it was not for being diagnosed with Celiac during my Freshman year. On top of work I am part of a couple amazing student organization that give me leadership roles and the opportunity to help others. Best of all I have the most awesome people I know as friends who always pick me up when I fall down (some of which I met because of my horrible health).
Impromptu Concert in NYC

Cause what's better than lying in a hammock and laughing till you cry?

Classy Roomie Dates!

One of the most amazing people I would have never met if I wasn't sick!

I may not have my health but I have so much more. My life is better than many people I know who are completely healthy. That is why you should not pity me, because my life is pretty amazing.


Self Injection Time?

Two years ago I was doing my research before my first rheumatology appointment and I discovered most people with autoimmune arthritis are on self injectable medication. 90% of kids with Juvenile Arthritis take a medication call Methotrexate, which can be taken orally but is mostly done by injection. Although I was also pretty positive we were not going to find anything at my rheumy appointment so I didn't think much about it. Once we discovered Uveitis in my eye though I thought my fate was sealed. Just under two years ago I was trying to prepare myself for the idea of sticking a needle in my leg. Within a few months of my then rheumy not doing anything I realized as long as I was under her care, for better or worse, I was not in danger of having to self inject. Under the care of my current rheumy the thought of possible self injections was on a very far back burner in my mind for a while but since my joints have done so well in the recent months it has totally disappeared.

So today when I went to a cardiology appointment and was asked if I could self inject I was thrown for a loop. I have research Postural Orthostatic Intolerance Syndrome (POTS) just as I always do. I have looked up the treatment options, but even though there is not cure or even remission there are lots of ways to treat POTS. Which treatment option you choose has much to do with each particular patient and their individual symptoms. Mostly its pills or IV fluids. I was mentally prepared for either option. Pills are easy (well NJ tube clogging aside), I take so many everyday, what's a few more? IV fluids? Those are the best, I always feel amazing with them. I can handle that, especially if it could be done on an out patient basis, THAT is practically my definition of heaven. Yes it involves a needle but a nurse is handling it.

A self injection is another story. You mean I am supposed to take a needle and stick it in myself? But I am not a medical professional. At this point I think it's just I was more blindsided by the whole thing than anything else. Once I do it I think it will be okay I just need to get to that point. I realize I didn't even ask much about the medication I am going to be injecting myself with. Me! Queen of driving doctors crazy with questions and research forgot to ask about side effects.

I will update once I actually get the medication which is called Epogen. POTS is an off label use so my doctor thinks we may have trouble getting prior authorization for it but says he usually gets it in the end.

Selfie at the Cardiologist (Unaware of the fate about to befall on me)

Still Chuggin Along

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!!!!

The Love/Hate Relationship with the NJ Tube

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 usually. She advised me to have two snacks a day. Simple solution, even though I was not hungry it was easy to eat and did not add any symptoms.

Then all my gastroparesis symptoms began. I struggled to eat, I would have half portions at meals and no snacks and still feel super full and throw up on occasion. Obviously my calorie intake quickly dropped and I had to start drinking Ensure to keep myself from losing weight. Once I started taking erythromycin I could eat again.

Even though I thought I was eating enough at the beginning of the summer I lost a few pounds and had to eat something every two hours and drink Ensure everyday. Slowly I was tolerating less and less food at once, so I was eating every two hours but not much. Before I knew it I was only getting in 300-500 calories a day and throwing up. The erythromycin had stopped working.

Now that I have gone on my rant about my caloric intake let me explain what your body feels like when you are getting 300-500 calories a day. Its like never getting more than 3 hours a sleep, having a fever, and being dehydrated all at once (okay so maybe the dehydration part is because I WAS dehydrated). There was nothing pretty about it. By the time I was admitted to the hospital I could not stand for more then a couple minutes and constantly felt like I was going to pass out.
Sitting on a blanket at concert and I notice all these things a perfectly laid out for a picture that sums up my life (Lace Toms, Gatorade, and my Feed Bag)

Thanks to my NJ tube I do not feel the way I just described anymore. I am now a fully functioning human being again (well if you exclude my stomach that is).While I hate the fact I am unable to eat more then 300 calories (400 on a super good day) without getting sick, lugging around formula and a pump in a backpack all day, and the fun fact I have an IV pole in my room now, I LOVE how I feel! And with out it I definitely would not have been able to go to a Passenger concert in Central Park!
Home is where the IV pole is...

Me and My friend at the  concert! (I think I rock the NJ tube)

The Joints are Doing Great (Cause Something Has to Be)!

Two blog post in one week, what is this craziness? I thought since my joints are why I started this blog I should give an update.

It's funny how this past month I have been sicker than I have ever been. I even spent a week in the hospital and added the possibility of a new diagnosis. I can not tell you the last time I ran but I am pretty sure it was the week I got home from school, like two months ago. I had actually been running about tree times a week for a while (thats something I certainly never thought I would say). Between not getting even half my caloric needs and increasing dizzy spells I am pretty sure running and any form of cardio would only lead to me fainting. I am getting side track but I will circle back around I promise!

So where I last left off I believe was off Sulfasalazine to see if that would help my stomach, but it didn't. I was off is for about a month. Shortly after starting it again my joints flared (including my neck to add in a new one). I called my Rheumy and she decided to do a trial of steroids to see if the pain was Enthesitis or AMPS. So I did a 12 day burst of prednisone and it was amazing. As I dwindled my dose down the pain crept back up on me. My Rheumy ordered an MRI of my left knee to see if there was inflammation, but it kept getting pushed off in favor of my pressing GI issues.

A month after the prednisone burst (and about two months after restarting sulfasalazine) was when I was in the hospital and noticed I had no joint pain. Ironically this is also when I finally managed to get an MRI done. Mind you I have not ran in months so I really have to chalk this all up to sulfasalazine! My joints feel better than they have in my memory, probably since I was ten. I really never thought I would be at this point. I am excited for my next rheumatology appointment and not because I am in so much pain that I want a change in treatment, I am excited to let my doctor know how great I feel! I am also thinking about asking to try and wean off celebrex! (That would mean no more regular blood test!!!)
Top is my knees last summer and the bottom is my knees now!



8 Days at CHOP

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 IV fluids and meds to see if that helped at all.

Day 2

Friday morning I was the first room the doctors rounded on. At CHOP they do rounds in the hallway, so I got out of bed and with my IV pole and all I went to stand at the door way. As my resident went over my long medical history I started to feel light headed and before I knew it I had fainted. Leave it to me to faint while 10-15 doctors are focused on me. At least I got a fast response from the doctors, My maintenance fluids were upped to 1.5x the normal dose. When my GI came in that afternoon she mentioned the possibility of me having  Postural Orthostatic Tachycardia Syndrome (POTS). (note: I have been having bouts of lightheaded/dizziness since December but this was the first time I fainted)
Keeping Busy on Friday


Day 3

Since I had been hooked up to IV fluids for 48 hours and was still only able to manage a few bites of food at a time it was decided I needed a feeding tube. We wanted to do a NJ tube (which goes through your nose and into your small intestines by passing the stomach), but it has to be place by interventional radiology and they are closed of the weekends so we decided to try a NG tube (which goes through your nose into your stomach) first since if by off chance I could tolerate it, it would be better in the long run since I would be able to take it in and out myself. The nurse who put the NG tube in was really awesome and had one herself when she was 13-18 because of crohns.
NG Tube is in...

I also went to the teen room and met another girl who is two years younger than me who also has gastroparesis and possibly POTS, although her POTS symptoms are a lot worse than mine.

Board Games in Hospitals Bio-hazard Bags and All
Day 4

On Sunday I woke up with pain and bloating in my stomach due to the NG tube feeds. On a better note I went with my new friend to the hospital library and we borrowed Lizzie McGuire to watch!
30oz Starbucks! POTS Sized!

Day 5

Monday I was hoping to get my NJ tube but IR could not fit me in till Tuesday. We did stop the NG feeds and I attempted to eat a couple bites here and there. Child life tried to keep me busy all day. I went to a duct tape craft activity and met some younger kids who were also on the GI floor, including a 9 year old boy and his mom who were down the hall from me and were admitted the day after I was and hopefully discharged the day after me as well. That night a friend of mine from Temple came to visit as well and it was nice to see someone I knew from the outside world who was not my mom.

Day 6

Finally I got my NJ tube! It took a little longer than expected. Three hours had past till I was awake again and I had thought I would be out for less than an hour since it was supposed to be shorted than an endoscopy. I also got a knee MRI which was ordered like forever ago but I first tried to fit it in with my work schedule than I needed GI test which took priority (My joints actually aren't bothering me right now but that's a whole post on to itself). Since the MRI was in the Wood's building(its where all the out patient clinics are) at 7 pm every thing was so quite and eerie like we weren't supposed to be there. Although oddly enough the TVs were still on.

Day 7

Although the girl I had befriended earlier in the week was discharged, I made a new friend, Anna, in the teen lounge who not only also had Gastroparesis (and an NJ tube), and possibly POTS (I guess no one has an actual diagnosis), but also AMPS, which is insane (she also has to make an appointment with a Rheumatologist for an eval, can someone say medical soulmates?). We hung out and sharpied her KT tape (my favorite kinesiology accessory, yes I have one and a favorite NSAID too). And to top off the day my best friend from Temple visited me! We totally broke visiting hours cause we are rebels like that...shhh....don't tell!
KT Tape + Sharpies

Day 8

I was hoping to get discharged bright and early but I was told I couldn't be till everything I needed at home was set up and my insurance was being difficult. So I kinda hung out all day. I ventured to the sea garden because a group from a committee I am on for HootaThon was supposed to be there but not enough people could come although I didn't receive the text till I was there already but it was nice to get some fresh air. In the afternoon I was hanging out with Anna and we went down stairs in front of Seacrest Studios and before we knew it we found our selves appearing on CHOP's in house channel, Galaxy 51. Finally at 7:45 I found out I was being discharged!
Tube Twins!

1 Year Post Left Hip Scope!

Look at this girl! It has been a year(plus one day) since I have had my last surgery! And there isn't any surgeries that I know of in my future! I have not had to go to PT is about 9 months! This is what I call crazy!

My left hip is doing pretty great! It is stronger than it has ever been. If you had told me a year ago that less than one year post op I would run a couple miles cause I could I would have laughed in your face. I am at a place I could never imagine I would be at. I do still have active enthesitis in my left hip, so I m not yet pain free but it is a completely separate pain than FAI and/or a labral tear.

My rheumy even comments how much more ROM my hip has then when I first saw her, when I was only a couple months post op.

If anyone is thinking of have a hip scope for FAI or a labral tear I would definitely recommend it! It was one of the best decisions I ever made.

You can barely see the 3rd scar! This side actually looks better than the right.

Running on Zofran

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 I stated puking. Just how I wanted to end my run. I held off on the post run selfie.

I decided I would wait two weeks till my next endoscopy to run again. Well that was yesterday but we need to wait for the biopsy results before we know anything. I decided not to wait to run. This morning I took a Zofran, drank some Gatorade and less than a mere 24 hours after waking up from anesthesia I was off. I ran 1.26 miles including my fast mile yet. I also was about to see CHOP from my run. No post run vomit either!
Pre Run Prep

Mid Run Selfie with CHOP in the Background!

That Awkward Moment When My Stomach Decides it Rather Not Digest Things

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 before meals.

For about 2 whole weeks I didn't throw up. Then on Monday morning I vomited after breakfast (which was not a good sign since I usually don't till the night. Of course that night I threw up not once but twice, throwing up all my meds (including the Periactin I take for nausea in hopes of not puking). At that point all hope was lost, I continued to dry heave. I almost went to the ER but I had a huge project due the next day so I called the on call GI at CHOP and she said not to try to retake my pills that night (not that I had any plans of trying) and to take sips of Gatorade every 15 minutes and as long as I was keeping that down I would be okay, but to take my pills one at a time in 15 minute intervals the next day. I managed to survive the night and complete my project as well as keep down all my meds in the morning but I didn't push the whole food thing.

Wednesday I saw my GI, she decided we should do an endoscopy right aster finals are over to get to the bottom of every thing. She gave me a prescription for Zofran to hold me over till than, and I haven;t thrown up since thanks to it. She was also impressed that I haven't lost any more weight, thanks to ensure and the fact I babysit for a dietitian.
New BFF

I thought my joints were doing well on Sulfazalazine but my Rheumatologist was not as impressed. I guess with how screwy my stomach has been I haven't realized how my joints are doing, There was a few different things she mentioned but we decided not to do anything until after the endoscopy because we don't want to rock the boat right before finals. She did give me a steroid paste for mouth ulcers I have been getting but I am hoping not to use it. The only one I have currently is at the way back of my moth so I am afraid I might hit my gag reflex by accident if I try to put anything on it since I can't see it.
Selfie with the Panda outside the Woods Center

I feel like all that was really established this week is my body is a extremely messed up and we are trying to figure out why still.

Celiac Education Day

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 cookie. I actually went to all three Zarro's locations in Grand Central in search of a poppy seed bagel, because if it was going to be my last a sesame seed one wasn't going to cut it. Now that I have gone off on my little tangent back to the gluten free bagels, they are amazing. They are actually NY style unlike Udi's bagels that are more like a piece of bread with a hole in the middle. As soon as Passover is over I fully intend on buying a full case.

I can't pay homage to NYC without mentioning a Philly favorite as well, the soft pretzel. As Celiac Education Day I discovered Tonya's Soft Pretzels. They taste even better then most street pretzels.

My last big discovery was Sweet Megan's. This is the first gluten free bakery I have found where the stuff taste better than the ones I make myself.

Lastly I went to a teen discussion about college. It was so interesting to hear from all the families there that were so concerned their children would have more trouble with Celiac once they go to college, for me it has always been harder at home than in college. I guess in the end it comes down to what you are used to. I also met Priyanka Chugh, who was leading the discussion. She survived college with Celiac and blogs as the Anti-Wheat Girl. I actually just one a gluten free giva away from her blog, I think it just came to my dorm yesterday (I get an email when I get a package), but I took an impromptu trip home so I will have to wait to get it.

Infection=GI Flare?

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 cut out dairy from my diet and if I do eat any to take a lactaid pill. The last thing is I need to cut back on my coffee again (since I triple my Periactin dose a couple weeks ago I have been up to 2-3 cups a day so it was getting out of hand).

Last Friday night I started throwing up, that continued through around Tuesday night. On the bright side the worst was always at night so I still managed to go to all my classes and babysit. Around Tuesday my stomach pain started getting worse, by Thursday it was like a "could barely eat and was having the same pain that sent me to the ER last semester" bad. When I say I was barely eating I mean I wasn't hitting 1000 calories a day. I even had to take a liquid supplement a couple times. Those are really gross, but they still taste better than GI cocktails.
Do not be fooled by the name, it does not taste like a coffee latte!

Thankfully yesterday afternoon I started to feel better, because I don't know if I could have taken much more. Today has been pretty good, it was CHOP Celiac Education Day, but that deserves its own post.

 


Rheum Update Plus Celiac Update and More

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 coffee. Trying to stay awake the first day felt like fighting anesthesia. So far it hasn't really helped my nausea too much.

The other things we went over at the appointment are the fact we will schedule an endoscopy sometime after finals in May to see if my small intestines have healed or not. Depending on the results of the endoscopy I may have a colostomy to check for Crohn's Disease.

Rheumatology Update

This week I had an appointment with my rheumatologist. I actually was not expecting much to change. While I am far from pain free I had a good stretch during winter break and even though my joints have been getting worse since back in school (I think it is all the sitting), they are still not as bad as they were say a year ago. Since there still is active inflammation though my rheumatologist brought up a new medication, Sulfasalazine.

This medication is not an NSAID like most of the ones I have tried (which means I will continue on Celebrex for the time being). Sulfasalazine is considered a Disease Modifying Anti Rheumatic Drug (DMARD). There are a few more side effects and depending is what is causing my GI issues is an autoimmune issue or not this can help or hurt my stomach. Since there are GI risks associated my Rheumy wanted to talk to my GI first, and since she approved I started the new med today. I am tapering up, which means I started with one 500mg pill today and every week I will add another pill until I am at 2 pills in the AM and 2 in the PM. I am very hopefully this med will help me become pain free.

I ran this!!!!!

I Year Post Op- Right Hip Scope

It is hard to believe that I had a major hip surgery a year ago. Recently I have been reading some of the post I wrote leading up to the surgery and right after. It amazes me how far I have come. The past year has been such a roller coaster for me, there was a point where I felt like I was just doomed to be on crutches forever. This week I ran a mile. That's right I actually RAN! I really never thought I would be at this point.

The first week after surgery was probably the hardest week of my life. Quite frankly I don't even remember what my hip felt like that first week, but my head as pounding. The spinal headache I had made me think I was going to die. There was one point when I just cried for a half hour because I couldn't even lift my head without getting dizzy and nauseous but I couldn't fall asleep because I was on caffeine pills. Thankfully it subsided without needed another spinal procedure (I might have flipped as I am now very afraid of needles anywhere near my spine).

Overall I am still amazed by how well my recovery went, it shocked everyone. My OS had expect it to be rough because of how much damage there was plus all my autoimmune issues and after my horrible knee surgery recovery two years ago both my PT and I thought it would be like that. My PT actually said it was the easiest recovery he had ever seen from that type of surgery, and he had to constantly remind me to slow down.


January Craziness

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 frustrating and takes way more time than it should and I end up starting to eat when my friends finish eating. I started counting my calories to see if I am getting enough calories, and I seem to only be eating 1000-1500 calories a day, EEKK. I am hoping to see the campus dietitian soon to see what options I have on campus. I also made some lovely gluten-free brownies this evening to help remedy the situation, I was actually surprised by how lovely hey are.
I love all my choices...

So hopefully my life will come down a bit and I will be able to write more soon.