Roar 2013

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!


Celiac Disease

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 and I was only under for under an hour. I felt fine afterwards accept a little drowsier than usual. The worst part was probably waking up to a phone call two days later from my GI saying I probably had Ceilac or when this was confirmed when I was standing in line at Cosi's on Thursday night.

Tips and Tricks When Going Caffeine Free

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 to finish a paper.
  • Sugary juices, actually I only really drank cranberry juice since I couldn't have anything acid and hate apple juice. I found the sugar gave me an energy boost and the crash wasn't as bad as most sugary things.
My Sans Caffeine Study Kit

Drink Tips
I am about the whitest white girl ever and look forward to enjoy millions of pumpkin spice lattes every fall (maybe not quite millions but you get the point). I did not want to give up my favorite drinks that easily.
  • The first lesson I learned was decaf does not mean caffeine free. So if you are just trying to cut back on caffeine decaf is great but if you want to cut it out of your diet altogether I am sorry to tell you the bad news.
  • Most places will work with you to make you a caffeine free beverage, once I had a barrister that was really excited and asked me if I could try his new fall creation that was caffeine free. This is probably the hardest tip to follow because I don't know about you but I am not good at speaking up for myself.
  • Use this as an opportunity to expand your horizons. Herbal teas are pretty great. I also learned the Starbuck's peppermint hot chocolate is pretty awesome even if it isn't quite a PSL.
Rocking the Peppermint Hot Cocoa

You Mean I Need to Get to Class?

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 and ER visit and an upcoming endoscope I am barely getting by.

College with a chronic illness is clearly different than without one. I see my friends go out and stay up into the wee hours of the night, and thats just not something I can do if I want to be able to function. SO while everyone else is drinking and going to frat party I generally stay in and catch up on work, and on rare occasions I might bake. I do go out to the city sometimes but most days I have to nap just to make it through all my classes since I am still running sans coffee. Thankfully my head is still above water even if it is just barely, but the end of the semester is in sight.

18th Birthday!

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!

A Long Week Featuring the ER and GI Specialist

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 was made up of Maalox, Tylenol, and Lidocaine. I must say I like Lidocaine much better when it is being injected into my joints. Three hours later I was finally discharge with prescriptions for Maalox and Tylenol Extra Strength.

By the time I got back to my dorm it was about 4, it is safe to say that I did not go to any classes Tuesday. Instead I spent a good chunk of time at the pharmacy trying to get my prescriptions filled. Then I started vomiting about 10 minutes after I took all my medications, which was really no fun and probably the low point of the week.

I did manage to get into see a GI Specialist at CHOP on Wednesday (although it did mean missing more class). She wants to make sure that we make sure that there isn't another cause of the gastritis beside side effects of celebrex so we are doing a few test. She is also trying to avoid an endoscopy, which I really appreciate, but did say I probably would need one. Fun fact I learned during this appointment is the Maalox stops the Protonix from working if taken to close together (too bad no one told me that before so I wonder it thats why I was throwing up on Tuesday?). So now I am taking the Maalox as need, but not for at least 2 hours after the Protonix.

Total Class Count for the Week-4 (although I did have some cancelled in all fairness)

When You Just Can't Push Through

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 had to wait 20 minutes from the time I get up until I even attempt to get out of bed, key work being attempt. Attempt meaning I try to stand up, my legs start giving out due to a mixture of stiffness, pain, weakness, etc. I quickly sit back in bed for a couple minutes, then use furniture to support me until my steps are steady enough to support myself. By the time I get to the bathroom to take a shower I need a break, I have to rest before and after my shower. Somehow I have managed to make it to all my classes this week and the homecoming football game today.

That brings me today, I got up for the football game and my joints were BAD, not like a little pain, it was searing and there was a good amount of swelling, actually I don't know why I am using past tense there still is. Somehow with compression sleeves and braces I managed to make it through the homecoming tailgate and until halftime. I am done though, I can't push through anymore. I feel defeated. I feel like I am failing myself by not going out with all my friends, failing my doctor's instructions.
Tonight is an Ice Pack Kind of Night

Hip Update: I GRADUATED PT! Thats right, I passed all the test, range of motion, balance, and even strength!

GI/Side Effects Update: Even though Protonix (the newest PPI I am on) has made the side effects better, to the point I should be able to stay out of the ER, there is still a ton of breakthrough stomach pain. I have ran out of options besides actually seeing a GI specialist so I made an appointment to see one at the end of the month at CHOP.

The Perfect Fit

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 stretchier and a bit loose in areas that swell (like my knees).

Shirts, when it comes to tops I generally go for cotton shirts that aren't too tight and do not have any buttons.

Dresses, I am not a huge dress person. In general sticking to things that have a bit of stretch and are easy to put on.

Shoes, this is the big one. If you recall I once wrote a whole post about taking back shoes. For a long time I restricted myself to sneakers, but that isn't realistic. Since then I have created rules. I will wear shorter wedges for short amounts of time. I allow myself to wear my boots whenever I want because I love them any they aren't too bad. When I but shoes I do check for arches. My PT has said that is the most important factor so I use it as my gauge.

I also try to buy the same clothing brands cause than I know my size or around it so I don't need to try things on.

Hurt Blogger also has a great post on clothing and arthritis.

3 Months Post-op to Gastritis and New Meds, and Everything in the Middle

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 induced gastritis. And he put I have an autoimmune disease on my chart so I can get in faster in the future.

At this point my joints are probably where they were before we started switching all these meds and my stomach is probably worse off then it was (which is ironic because that is why I switched meds to begin with). I do not plan on saying anything to my rheumy until my next appointment in November because I am exhausted from this last go around between the flare Mobic caused and the gastritis.

This week I got a cold but I am on decongestant so even though I slept whenever I was not in class yesterday I am feeling pretty good today and only took one nap. I love being able to nap, that may be my favorite part of college.

I almost forgot to post about my 3 month post op mile stone. It is really nice to be 3 months out from surgery and not having another one on the horizon. Even though I still have pain at times I feel like I may have a chance to reclaim my life back from my body someday soon.

Here are some random pictures I have taken:
Hay Rides and Moccasins While Apple Picking on the 1st Day of Fall!

William Penn is Up There!

City Hall! I Really Love Philly!
Roomisa Take on Eastern State Penitentiary! 

30 Things You May Not Know About My Invisible Illness

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 position and waking up in the middle of the night in pain
10. Each day I take __ pills & vitamins. (No comments, please): 6 or 7 usually
11. Regarding alternative treatments: I am pretty open minded to things that have some medical backing.
12. If I had to choose between an invisible illness or visible I would choose: I can decide on this because it is nice not to be thought of as the sick kid but it is also frustrating when people don't seem to believe me because "I look healthy"
13. Regarding working and career: I am currently a college student
14. People would be surprised to know: I used to hate running and now I really want to be able to run
15. The hardest thing to accept about my new reality has been: I need to slow down sometime and I may never get back an active lifestyle.
16. Something I never thought I could do with my illness that I did was:I played twister last week and I was pretty happy about that.
17. The commercials about my illness: There aren't any about mine specifically but the ones about other forms of autoimmune arthritis because they never show anyone even close to my age, and I am far from the youngest patient with this disease.
18. Something I really miss doing since I was diagnosed is: Horseback Riding 
19. It was really hard to have to give up:Hiking
20. A new hobby I have taken up since my diagnosis is: Blogging
21. If I could have one day of feeling normal again I would: Hike, Horseback Ride, Run in circles, dace, and eat pineapple!
22. My illness has taught me: Not to judge people so fast
23. Want to know a secret? One thing people say that gets under my skin is: "Oh I have some of that in my hand from when I punch a wall" (yes someone actually said that to me)(or anything similar)
24. But I love it when people: Just listen and don't doubt me, or help me when I ask for help with out saying how silly it is that I can not do a simple task.
25. My favorite motto, scripture, quote that gets me through tough times is: "It gets better"
26. When someone is diagnosed I’d like to tell them: Its scary and hard and it doesn't get easy but it is and will be okay, it does get better and you will make it through this and be a stronger person.
27. Something that has surprised me about living with an illness is: How many other people face it but how few people know about it.
28. The nicest thing someone did for me when I wasn’t feeling well was: Someone once sent me an amazon gift card when I was having surgery.
29. I’m involved with Invisible Illness Week because: To create awareness!
30. The fact that you read this list makes me feel: Happy you cared enough to get to the end!

Enthesitis and AMP

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 are 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 signals like normal, so I will still feel pain after it is no longer there. To treat this I have to exercise for 45 minutes a day. I also have  to try to reduce stress, which can make the condition worse. I am also going to a physical therapist and an occupational therapist who specialize in AMP so they can teach me ways to desensitize my nerves.

2 Months Post Op and College!

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).


Long Day at HSS

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 totally happy with this appointment because I do not want to be having the same knee problems in a few months. I am 17 and this is my second cortisone injection into that knee, which isn't terrible since they were two years apart but I don't want to continue at this rate either, and PT in clearly not enough.

My last appointment of the day was PT, my last PT appointment before I leave for college. I have been seeing the same PT was two years and he has been amazing and has gone out of his way to accommodate me more than once, I am really going to miss him.

I also have been trying to set up all my medical care in Philadelphia. By some stroke of luck in September my OS is opening an office in Philly and will be seeing patients there four times a month, so no need to worry about that. I called the Children's Hospital of Philadelphia to set up appointments with a opthamologist and rheumatologist there. I managed to get through to the ophthalmology department and the uveitis clinic will probably call me on Monday to set up an appointment. I called to late to get to the arthritis clinic because they close an hour earlier but I have the number for it so I will call on Monday. As far as PT goes I found a place that will treat me on campus except for the initial visit, so I will probably go with them.

I will be on vacation next week so I may not post.

6 Weeks/6 months Post Op

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 enough I have tried everything, I know its not a great solution but I just want the pain to stop and fast!

The Perfect Body?

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, I have a lot of scars. I have 8 scars from surgery, 1 from a go-kart burn, 1 from a shell, 1 from falling down a rocky hill, 1 from a marble table, and 2 from falling off a bike. In case you lost track that is 14 in total. Those scars are less attractive in a bikini, the ones on my hips and knees are especially ugly. I find it hard to feel good in a bathing suit with my hips exposed. I guess all the scars should remind me that what ever doesn't kill you makes you stronger.

My final issue with my body is I feel like I am constantly at war with it. How am I supposed to love something that causes me so much pain and hardship? It is hard to remember to try to work with my body instead of against it. It is better to stop when I am in pain and fix (or at least try to fix) the problem, weather that means putting fancy cream or a brace on the joint or taking tylenol or getting ice/heat, and not try to push past it. I am not at the point yet where I work with my body as much as I should yet, I try to fight it a lot. My goal is to get to the point where I know how to work with my body to eliminate the problems I have with it and have a better self image.

Do you have self image issues related to a chronic condition? What are ways you improve your self image?

Progress?-5 Weeks Post Op

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 exhausted by the time I go to PT.

In general I am just really stressed about college right now, I need to see where I can go for PT, and find a pharmacy, and I may be seeing a new ophthalmologist (at least I have a name for that one), and everything normally people need to do to get ready!

Who Needs External Rotation Anyway? (4 Weeks Post Op)

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 pain free, I just need bearable.

All in all if this is my only stumbling block with this surgery I can't complain.


Another Fun Filled Day at HSS

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 wants me to get off crutches as soon as possible, which I am trying my best to do. As far as the laxness of my joints, she has mentioned I am borderline hypermobile be for but this was the first time she said it was causing problems. Basicly PT is the only thing I can do about it. I am so sick of doing quad sets but I guess I better get used to them because it looks like I will be doing them forever.

Although she still doesn't think I have Lyme she decided to retest me for it since all my other test were done relatively close together. And since it has been more than six months we also redid the RF test, a couple others, plus my regular liver function blood work.

View from Outside Pediatric Hematology

3 Weeks Post Op and the No Good Stomach Ache

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 to wake up at 4 am to get to Philly on time, so at least my exhaustion made sense.There was a ton of walking involved, which did not bode well for my joints.
My Right Knee Did Not Do Well
There were some good parts #TUbigchairs


Friday I started to have a terrible stomach ache. First I thought I just had to eat something and it would get better, but it didn't. During the car ride home I was close to tears. And the stomach ache has continued throughout the weekend and seems to get worse when I eat. I think it is from the Voltaren, so I am waiting for the rheumatologist to call back to see what I should to do.

3 Weeks Marks the End!!


2 Weeks Post Op, the 4th, and the Opthamologist, Oh My!


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 school with any of my doctors. He gave me the name of a doctor at Children's Hospital of Philadelphia that treats Uveitis. I am not sure if I am going to switch yet. On one hand in may be good to continue seeing the doctor who is familiar with my case but on the other side, if I have an issue that comes up while I am at school I will have no choice but to see the new doctor so maybe it is a good idea to see her before I have a problem. Next week I will bring it up with my rheumatologist.




1 Week Post Op (and days 4-6 too)

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 time around, mostly because I did not have a spinal headache. I have also decided the item I hate using the most, the brace is worst than crutches or the CPM.

Post Op Day 2 and 3

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 sure how I survived all that, but it felt nice to get out.
They also made Ramen in a Pot.

Post Op Day 3

I think I have been paying for overdoing it now. I am completely exhausted! I slept all morning in the CPM. My brother took me out for lunch, but I was like in a daze the whole time. Now I am back to napping and CPMing, and later my friend is coming over.

CPMing!!

Left Hip Scope Surgery and Day 1 Post Op


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 pain meds means I am less likely to get nausea from general anesthesia. The IV instead of gas also meant I did not have to be intubated which was my biggest fear. So I ended up choosing the general IV anesthesia at the recommendation of the anesthesiologist .

Pre-Op Selfie
Before Surgery they also checked to make sure the brace and CPM were the right size, which was good because like last time the waste part of the brace was too big. A PT also made sure I could walk with crutches, which was really good because they let me out of bed to use the bathroom before I saw a PT after surgery unlike last time.
Post Op Selfie

I had expected to be even groggier when I woke up from surgery than normal because of the general anesthesia but I was actually more alert than in the past. I also thought I would be in more pain but I wasn't, plus my mouth was not super dry. Also no one made me eat more than some crackers before giving me pain meds which made me really happy because I am usually not hungry right after surgery.

View from my Room at Night
Post op day one was filled with the typical parade of people. All the different pediatricians and PTs.
Sunrise

When my OS came in he explained that while he did shave some bone and remove two bone spurs to fix FAI and he debride the Labral tear, the main issue was actually the inflammation, which he removed and biopsied to check for JIA/JRA. From what everyone was saying it sounds like JRA is now on my chart. I will have to see what my rheumy says about everything when I see her mid July.

My other concern is my foot/ankle are sore, and the PA confirmed it was just from the traction like I had thought, but then I noticed that there is a black and blue bump on my foot where it hurts, so I will show that to my PT when I see him tomorrow.
If you are cool enough to bleed through two band aids when you get your  IV taken out you get a pretty gauze pad under the third one!

Overall I am doing pretty well for one day post op, I am writing this as I am in the CPM machine, although I forgot how painful the brace is, I had stop taking pain pills but after being in the brace during the car ride home I needed one.



Graduation!



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?