Life with a Flare

As I did with last year I choose a song to describe this past year, Roar by Katy Perry. When I saw the lip dub done by a Children's Hospital I instantly felt connected to the kids. The song talks about constantly being pushed down but getting up and being even stronger than before. I was pushed down a lot during this past year but I would like to think I am stronger for it. Looking back on 2013 there were a lot of bad things: 2 hip surgeries, an ER visit, and multiple life changing diagnoses. In the end there was way more good things: senior prom, high school graduation, starting college at my dream school, and amazing times with amazing friends. Even with all I have been through I would not want to change anything of the past year, because without the bad I might not appreciate the good. (Although I wouldn't mind having a few less doctors appointments in 2014!) So here is to 2014!

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...

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...

Monday I became a legal adult! I played the lotto and everything. It was an amazing day and my body behaved all day long, which is a rare treat. I won the Lotto! ($5) My Roomie Decorated my room! I won an Award I had a lovely Birthday Dinner with these Ladies! Found Chocolate on my Door Handle And the day ended with this cake!

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 ...

No one will ever be harder on yourself than you are. When I was diagnosed with AMPS a couple months ago I was told I needed to push through the pain. This idea was reaffirmed when I went to see the PT and OT at CHOP. This is what I have been doing. I have not missed a single class because of my health yet this year. Besides for when the Mobic did not work I have not gotten to the point where I have called my Rheumy. I have not missed a commitment or scheduled event. I am proud of all these things but at some point the pain started getting even worse this week, something had to give. I did everything I normally do plus put some of the anti-inflammatory fancy cream on a few joints. It is homecoming weekend, I was going to push pass this flare, I had to push passed it. Two weeks ago I had decided I was going to go out this weekend, yet here I am writing this blog post instead (not that I don't enjoy blogging but...). The past couple of mornings haven't been pretty. I have ha...

A couple months ago I did a post about self image and chronic illness and here is my long promised post about clothing and chronic illness. Shopping, as it is for most girls, used to be my favorite activity, but somewhere along my journey of medical problems I came to despise it. Braces would make it hard to try things on and I have constant restrictions on what types of shoes I can and cannot wear. On top of that I have to think about what will accommodate my joints, should they decide to swell. Clothing is complicated! Here are some tips that make clothing easier (at least for me and I hope you too!) Yoga Pants , these things are my savior, they are very forgiving for muscle mass changes and joint swelling. I probably wear yoga pants. Another bonus about yoga pants is they are easy to put on. Jeans , these tend to be a no go, although I have found ways to wear them more recently. 1st I have let go of the whole skinny jeans trend. When I buy jeans I make sure they are stretc...

I have been so bad about updating this blog! Mobic did not go well, I only last about two weeks on it, then I switched to Celebrex. Celebrex is supposed to be the easiest on the stomach of all NSAIDs, well cause I am me that is not how it worked out. About a week or two into taking Celebrex my stomach pain got a lot worse, I actually thought I had an ulcer. It was not fun at all. So I went to student health services and had to see a nurse before I could get a doctor's appointment. Right away it was agreed on I needed to see a doctor as soon as possible, but the next available appointment was not till the next day. When I did see the doctor he was really great and prescribed Protonix to replace Prevacid, but did say if I have anymore stomach issues I need to see a GI specialist which I would like to avoid. He also confirmed that it was probably gastritis and not an ulcer but went over all the signs to look for. The doctor also said he would try to do some reading on NSAID induce...

I am doing this post for invisible illness week which is this week.  1. The illness I live with is: Enthesitis, Amplified Musculoskeletal Pain(AMP), and Uveitis 2. I was diagnosed with it in the year: Uveitis-2012, Enthesitis and AMP-2013 3. But I had symptoms since: 2006 4. The biggest adjustment I’ve had to make is: I have had to learn I can't do everything I want or everything that other people my age are doing. 5. Most people assume: I am perfectly fine or I just have osteoarthritis and not an autoimmune disease. 6. The hardest part about mornings are: Getting out of bed, doing my hair, and figuring out what outfit will be the most comfortable for the day (and accommodate any swelling I may have) 7. My favorite medical TV show is: Grey's Anatomy (and Scrubs even if it is no longer on) 8. A gadget I couldn’t live without is: My Freezer 9. The hardest part about nights are: Not being able to fall asleep in a comfortable pos...

Okay guys I have been meaning to post this update but I have had no time to write it. Last week I had an appointment with a new pediatric rheumatologist , usually it is a long wait to see one but there was a cancellation so I got in really fast. During the appointment I was diagnosed with two things. The first is Enthesitis, with is an autoimmune disease were the the things that attach ligaments and tendons to the bones in joints become inflamed, it can also cause Uveitis. The first line of treatment is NSAIDs like like Voltaren but I had to switch to Mobic because I was having a lot of GI issues, so the new one will hopefully have less side effects. At this point we a re sticking to NSAIDs because it is hard to tell how severe the disease is because of the 2nd condition I have. The second thing is Amplified Musculoskeletal Pain, this is a nerve condition that is a result of the fact I have had untreated chronic pain for so long. Basicly my nerves no longer know how to turn off pain si...

I feel like I haven't written in ages, I have had so much going on. First I was on vacation in Maine then I had welcome week at school and the first week of classes. This is just going to be pictures, but I have a lot to write about in my next post if I ever get the time! Lil Sis Surveying the Ocean Loving my new LL Bean Moccassins My idiot sisters were the only one in the water at night without a wetsuit on! So I may have made my sister get up at 5am to see the sunrise! Carousel Sister Selfies Learned How to Use KT Tape Temple Time! Target Take Over! South Street in Philly! Ziplining In the Middle of a City So Blogger is getting mad at me for adding too many pictures so I am just going to put one more as a sneak peek to my next post (if I ever get the time to write it).

I manage to survive all three of my appointments yesterday somehow. First up was my OS for the six weeks on the left hip and six months on the right hip. He was happy with where I was with both and said to worry about the motion but focus on the strengthening. When I asked for a cortisone injection in my left knee he said okay, but at first he said that he thought the pain in the left knee was probably referred pain from the hip, but after he examined it he did notice fluid. I also ask for a prescription for a home TENS unit, so that is being ordered as well now. My last question for the OS was when can I start horseback riding again? In 6-8 weeks (at 3 months post-op) I can start riding a little but no jumping, and I can ride without restrictions at 4-6 months post op. The rheumatologist appointment was not exciting, I may eventually get an MRI on my left knee but not for a while since I just had a cortisone injection. We aren't changing any meds or anything. I was not total...

Actually I missed both milestones, yesterday I was 6 weeks post op on my left hip and the day before was the 6 month mark for my right. Scars! L vs. R! I decided to look back at the post I wrote the day my right hip was 6 weeks post op, and that post was not focused on my hip. I was in pain at that point, a lot of it, and not hip pain. I was in a flare that day my knees and shoulders were not happy. Here I am 6 month later, having had two major hip surgeries in the recent past, and once again I am in a lot of pain, and once again it is not hip pain. My knees, well mostly my left knee, have been killing me. Once again I feel like I am having trouble pushing my hip because of my knee, its like a never ending cycle of pain and horribleness. On Friday I see my OS, Rheumy, and PT so I am hoping for some answers on my knee. However I doubt I will get them straight out so I think I am going to ask my OS for a cortisone injection for my left knee, because this has gone on for long enou...

Today I am going to write about a taboo subject- body image, and how living with chronic illness/pain has affected it. I get told how great my body is a lot, I am tall and fairly skinny. Not to be egotistic but I look pretty good in a bikini. I should love how I look. I should be confident of my body, after all I just bought a pair of size 2 jeans. Yet I still struggle with loving my body. My New Jeans! In middle school I thought my legs were fat, that was when I had muscles from horseback riding, today I miss my muscular legs. My thighs tend to be two different sizes, the left one is almost always smaller. The reason for this is simple, my left quad has atrophied from months of limping and being on crutches when I was 15/16, at one point it was so bad my doctor measured it and the difference was a good 2 cm in circumference. Today they are almost the same size, and probably look the same to anyone else, but to me they still look different. If you haven't guessed it yet, ...

My PT thinks I am making progress with the external rotation, although I am still not convinced. Overall he still thinks my hip is tight so thats not good. I was really hoping to be able to just do my PT exercise on my own at school and not have to find a new PT right away or pay for it since my insurance is no longer covering my PT, but looks like I still need manual therapy. Plus my left knee has been acting up a lot, like wake me up in the middle of the night type bad, so I will eventually have to deal with that which will probably mean more PT. Current ER Next Friday in my last appointment with my PT since I am going away the following week and then I go to school. In general next Friday is going to be a long day, I also have an OS appointment followed by a rheumy appointment, so I will have to drive to the city and go to those appointments then come home and go to PT. On the bright side it means my mom can't drag me anywhere after the appointments at HSS, but I will be e...

Oh yeah, this girl does if she ever wants to get on a horse again. At 4 weeks post op I am doing very well, no pain with weight bearing at all. Yesterday I did not use even one crutch once, that beats my last surgery by about a week. However I am struggling a bit with gaining back my ROM. I am completely frustrated, I figured ROM would be no problem because last time around I had a larger ROM then pre-op around week 3, but this time no. I got my extension and flexion without issues, my internal rotation does not seem bad either, it is just the stupid external rotation. Of course it would be the one direction that is essential to horseback riding. Even Getting it This Far HURTS!!! I am not going to give up quite yet though. I plan on stretching it for a few 30 second periods (if I can last that long) at least twice a day. It will get better, it has to get better. My PT said I may never be able to ride without pain again, but he didn't say I can't ride. I don't need p...

First some exciting news, I get to wean myself off crutches! Basicly my PT has decided I can make my own decision, so right now I do not use them at all in the house and bring them with me when I go out, tomorrow I will have a day with a lot of walking but then I plan on definitely being down to one or none all the time. Heat then Ice and Stim @ PT (my favorite parts) Thursday I went to the rheumatologist. She thinks I had gastritis (which is the inflammation of the stomach) caused by long term NSAID use, which is what caused the horrible stomach pains. Currently NSAIDs still seem lie the best treatment option since we finally had found one that works. She decided to switch me from Prilosec to Prevacid for the side affects and restart the Voltaren, so today was the I took Voltaren with Prevacid for the first time and hopefully I will not get gastritis again. My rheumy thinks the two things that are my biggest problem right now are my crutches and how lax my joints are. She ...

This past week has been really rough, although my hip is doing really well. Last Tuesday I had my 2 week post op appointment. It went pretty well, everything looks good. The biopsy of the inflammation came back negative for RA. The OS mentioned I toe in when I walk, something which my PT has been telling me for 2 years. Still had to stay at 50% weight bearing for another week (which is disappointing because I thought since I started out with more weight on the leg then last time around I would get to wean sooner not later). I also got a letter to send to my insurance company to try to get them to cover more PT. Wednesday I woke up extremely tired. I took a shower and then went right back to sleep, I even fell asleep in the CPM, which I have tried to do before but never been successful unless I was still on narcotics. I woke up just in time for my weekly PT session, where I noticed my right shoulder hurt and my left ankle did as well. Thursday I went to college orientation, I had ...

I can not believe it has been a week since I last wrote, so much yet so little has happened. I still get to spend about 6 hours a day in the CPM machine, as well as wearing my oh so lovely hip brace when I go out. At this point I am in almost no pain. I also had to get new crutch tips because chunks of rubber were coming off of my old ones. Oh and do you see that split in the top? On the 4th of July I did not do much during the day, I decided to get through my CPM time so I could go out at night. It was nice to get out since I did not go out much last week except for various doctor appointments. I made s'mores and watch fireworks with my friends. My friend was very insistent that the chairs were stable and I should sit on one because of my hip. S'mores Selfie Fireworks! On another note, today I had an opthamologist check up, and I am happy to say I am Uveitis free! It was the first time I had discussed the possibility of me finding another specialist at...

Post Op Day 4 I did not do much besides hang out in the CPM machine. Although I think this was the first day I was completely off painkillers! Post Op Day 5 After doing my 6 hours of CPMing I went to my friend's graduation party! Ok so dresses and hip brace do not look great together but as long as the dress is a bit shorter than knee length it is do able. I spent a good amount of time sitting with my feet in a pool as my friends swam but my lower back/hip started to hurt so I decided I might be better off in a chair with a back. I slept over after the party, I actually slept pretty well on a couch it probably helped that it was around 3:30 am by the time I went to sleep. Post Op Day 6 I left my friend's house around 11:00, as most of my friends were getting back in the pool and I still needed to do 6 hours of CPMing. My big accomplishment of the day was biking on the stationary bike for 20 minutes. 1 Week Post Op! I survived the first week a lot better this ti...

Post Op Day 2 We receive a phone call saying that I have hit my annual cap for insurance.  Cue major freak out. Well then I found out it is just PT they are cutting off, which is still not ok but not quite as scary. My PT said he will work with us to make sure I can still see him and I plan on fighting the insurance company because we are not supposed to have a PT cap, and someone told me it is illegal to have one in the state of CT, so if anyone knows information on that please share. I still had my first PT appointment as planned. My PT was very happy with where I am at and said I look more like 2 weeks post op not 2 days. I was told to do glute sets, modified pelvic tilts, and my all time favorite exercise (cue lots of sarcasm)... quad sets. I cannot wait until I am allowed to weight bear more so I can stop the table exercises. All was ok though because I got to end with ice and stim. I even somehow managed to go to my friend's house for s'mores. I am not quite su...

I am home from the hospital from hip surgery number two! I probably wouldn't of stayed over night except my surgery wasn't till 3:30 pm. The big discussion pre-op was what kind of anesthesia I should get because I got a spinal headache from the spinal block last time. My OS was still adamant that he thought I should avoid the general. I was also really scared about the general because I had been told it meant I would need to be intubated which I did not want. When I talked to the anesthesiologist he had a very different take on the situation, he said I had a very high risk of getting a spinal headache again because I am above normal height, I am a teenage girl, and I had a spinal headache four months ago. He said if I had a general I may have of miserable night, but that would be compared to three or four miserable days if I got a spinal headache. He also used an IV only version of the anesthesia instead of gas which reduces nausea, plus the fact I do not get nausea from ...

I am a high school graduate! I can not believe I actually survived senior year, it has been a trying one. This whole weekend has been amazing. Since I am really exhausted I am going to just post pictures. I am so proud of my cap, I free handed it! So Ready! Waiting to get in to the all night Post Graduation Party! Relaxing at a Post Post Graduation Party Party! And tomorrow is the scope on my left hip. I am so excited to get to the other side of this surgery, and can not wait to be back on Voltaren. Have I mentioned how much I love Voltaren recently?