Another Piece of the Puzzle

Today was my eye doctor appointment. The eye doctor found inflammation in my left eye, something that is a sign of auto-immune arthritis. As the doctor put it, it is another piece in the puzzle of the diagnosis.

Since I haven't gotten my blood test results yet, I do not have all the pieces. Yet as I look at the puzzle I realize there are enough pieces to know what the picture will look like. I don't like what I see. I really do not have the emotional energy to write a lot today so I will write about what is next later.

Rheumatologist Appointment Conquered!

Yesterday I spent a whopping three hours at HSS. I really liked the Rheumatologist, she was on time and spent over 45 minutes with me! I never felt she was rushing, she asked me to tell her about everything from the beginning, then she did an exam.

There was no diagnosis. She sent me for blood test to look for Rheumatoid Arthritis(RA) and other auto-immune diseases. I was also sent to an opthamologist to check my eyes for signs of arthritis, and I will have to go every three months until RA is ruled out. Also I was prescribed some stronger anti-inflammatories along with medicine to protect my stomach from them. And then I was sent for a right hand x-ray because a few of my fingers started hurting last week.

For the hand x-ray I got to wait in the pediatrics waiting area, which is much more awesome than the others. First off it was colorful, filled with purples and greens, instead of the usual shades of grey and beige. Plus there are both adorable babies and adorable guys my age waiting there, big improvement over people about 50 years older than me. Also the x-ray tech was a lot better than the last one I had. So overall I like the pediatrics radiology department much more than the regular one (even though the wait was about three times longer).

After the we finished my mom and I went over to Tiffany's on 5th Ave. to meet my cousin from England and her mom. She was there to pick out wedding bands for her and her fiance, so that was fun. Plus as soon as Thanksgiving is over NYC starts gearing up for Christmas, so there were decorations all over 5th Ave.

Christmas Tree @ Tiffany's
However the whole day was rather exhausting. Thankfully I got an early dismissal from school today so now I plan on sleeping!

A Better Pain Chart

I hate when you someone asks you to rate your pain on a scale. It is a really hard task, I go back and forth between wondering if they think I am exaggerating to being afraid that if I don't give a high enough number they won't think its that bad. Also there are different types of pain. And when have the any of the faces that go with the chart on the wall ever properly reflected what anyone is feeling?

Well I have seen this chart floating around the internet a few times so I figured I would share. It still isn't perfect but it gives examples of similar pain and much more accurately describes my feelings while in different levels of pain.

A Better Pain Chart

I am Taking Back Shoes!

A year ago I only owned one pair of sneakers, they where the shape-up sneaker (you know the ones that supposedly helped you tone your muscles). Well on day 1 of PT after knee surgery I was told they were off limits, since they did not teach someone who was relearning to walk how to walk properly. Normal people might have bought new sneakers then, but I did not, I just wore converse instead.

Fast forward to my last day of PT, I was told converse were bad too, they were hurting my balance, in fact maybe I should just chuck all of my shoes and get a real pair of sneakers. Well I did that, for months I wore sneakers about six out of seven days a week. I missed my moccasins, uggs, and variety of flats. Shoes can make or break an outfit, no skirt looks good with sneakers. 

As boots came into fashion this year I tried to ignore the whole trend, even though I desperately wanted a pair, but why buy something you will never wear? When my aunt asked me what I wanted for my birthday I could not resist any longer I said boots. I decided after 10 long months I am done with sneakers.

So on Black Friday we set out to find boots (no we did not wake up early but instead waited until right before lunch when most of the crowds had died down).

The Amazing Boots
After finding the perfect pair  realize how much I love shoes. My sneakers are going in the back of my closet and may come out again on a bad day, but I am done with them. Maybe I will get inserts (maybe not), but my joints are done controlling my footwear choices.

Ten Thankful Things

Lately I have been a bit down, and I read somewhere writing down ten things you are thankful for at the end of the day can help. I don't think I could get ten new things everyday but figured I could try it once and thanksgiving week seems like the perfect time.

Here are the things I am thankful for.

1. I am thankful that I have no doctors appointments all week.

2. I have the most amazing friends in the world that always listen and make me feel better.

3. I have great teachers this year, two who will not let me leave class without smiling.

4. My parents, who get up at ungodly hours to bring me to doctors appointment and PT.

5. My PT knows exactly when to push me and when not to.

6. I am thankful to be finally making progress in my diagnosis.

7. I am thankful to FINALLY be done with euflexxa injections.

8. I am thankful to be done with college applications.

9. My youth group, which is full of people who are always there for me no matter how far away.

10. I am thankful to be going to my youth group's international convention in Boston in December.

Hope everyone has a great Thanksgiving!

Euflexxa- 3rd Time's the Charm

I am done with euflexxa injections!!

First thing I did today at HSS was go for right hip x-rays. Worst x-ray experience of my life. The x-ray tech kept trying to move my hip in ways it doesn't move, if it did move that way I would not have been there getting x-rays!

Then it was off to the OS's office where the PA came in and asked me how I felt after the last injection and I told her I had the same symptoms as after the first she decided to talk to the OS before doing the injection. He came in to the exam room and asked me more about my symptoms, and told me while he had seen plenty of local reactions to euflexxa he had never seen a systematic one in about 5,000 injections. Apparently I am special. It was decided that it was worth doing the last injection even with the side effects. 

There was a little less pain during the injection than the first two times, but the ten minutes after hurt a lot more than any of the injections, the first hour was just really painful in general. Now it is much more tolerable although still more pain than at this point after either of the other injection. Since this injection was later in the day than the others I haven't quite started feeling the side effects yet, so now I am just waiting for them to set in and in two weeks will hopefully start to feel improvement. 

The plan as it lies now is to see the rheumatologist in two weeks, and in four weeks I am getting a diagnostic injection in my right hip (just anesthetics no cortisone this time) and will have a follow up with the OS. Hoping the rheumatologist doesn't find anything, the euflexxa works (and with any luck when my left knee improve so will that hip since the hope is I will rely on it less), and the hip injection confirms surgery will help we will schedule right hip surgery.

Please, Don't Give Me Any More Advice!

"Have you been tested for Lyme? Did you send your test results to a lab here or in California? You know, 30% of all test come back negative and are really positive, but this lab in California is much more reliable, they caught mine. I will tell your mother about the lab."

"Have you seen a chiropractor yet? Maybe your back is causing the problems, a chiropractor could give you exercises to help."

One more unsolicited piece of medical advice may just push me over the edge. After spending all day with family for my birthday, I am ready to deck someone. I know they all care and are just looking out for me, but at the same time can we talk about something else please?

When someone has at least one doctor's appointment a week, chances are they really do not want to talk about anything medical related unless they bring it up. Between different doctors and PTs there are already enough opinions floating around in their heads, they do not need another one.

Unsolicited medical advice tends to fall into one of two, the 'not exactly true/ I have known that for years' category  or the 'I am pretty sure you are crazy' category or if you are really lucky it could fit in both.

Not exactly true/ I have known that for years- This encoumpasses all common knowlege advice such as "multiple joints could mean there is something systemic." Yes it does, since you realize this the doctor has also, not so shockingly, came to this conclusion. Some of these statements aren't always factual either, such as the "maybe it is a nerve problem," thanks but no thanks, pretty sure that cartilage damage on the MRI proved otherwise.

I am pretty sure you are crazy- This sums up what I will think if you suggest I participate is a healing circle or any activity of that nature. Yes I will probably agree to it, but if you perform reiki on me I will sit there than entire time trying to figure out how to get out of 'trying' it again without offending you. So if you do believe reiki or healing circles work, I am very happy they helped you, but if you suggested it to someone else, just because they are too polite to say they think you are crazy does not mean they aren't thinking it.

So next time you want to put in your two cents on someones medical mystery please consider if they really will find it helpful or want to hear it, because being constantly given advice can do more harm than good to someone's mental health.

One Year Later

On November 8th 2011 I woke up at six AM, even though I had the day off due to election day. I confused all the nurses in the pre-op area with a smile of excitement  This was it the last leg in this nightmare, I could finally see the light at the end of the tunnel. I was going to finally find out what was wrong with my L knee, and better yet get it fixed. I will be able to actually straighten it. Yes, that day I smiled as I thought I was going to get my life back.
Leaving the Hospital

One year later on the same day I am so far from the mind set I was on that day, but not in the way I would have hoped. Today I was talking to one of my teachers about my hips (as she also has a fair amount of trouble with her hips) and she commented on how well I was handling everything mentally. It took all my strength not to start laughing and crying at the same time.

I do not know where I am at emotionally at this point in time, but it feels very far from the optimistic girl excited to have knee surgery a year ago. Instead I will try anything to make the pain go away but have faith in nothing. I miss being an optimist, everything is better as a optimist.

My knee scope was a turning point. Originally I thought it was a good one, after all I improved for a while afterwards I even reached full ROM for the first time in over eight months. Now I realize it just marked the beginning of the worst. It was the first surgery, but I know it will not be the last.

Euflexxa Two out of Three Done

Yesterday I had my second euflexxa injection (supposed to be third but Hurricane Sandy screwed that up...not that I am bitter or anything). My last one is next week.

The appointment did not take long, only about five minutes. My knee was sterilized, "numbed", and then I got the injection, which hurt as much as last time but at least I wasn't blindsided by the pain this time. After the injection my knee was more painful and stiff than last time. Even today I can't stand on it while it is extended.

In other news I finished my six weeks of PT this morning, but I am sure I will be back in PT soon. And three weeks till the rheumatologist appointment.

Update- I totally forgot to write about how I am feeling now...which is not good. I feel sick again, exactly the same as after my 1st injection. Even though I was told that is was just a coincidence I got sick after the injection I am sure it is not now, but since I only have one left and last time I was only sick for about two days I am just going to stock up on tylenol. These shots better be worth it.

The Best Present!!

Is heat and electricity and internet and all that fun stuff that people tend to have trouble living without in the 21st century. Yesterday my house got power back and there was nothing better I could have woken up to then a shower in my own house!

My town was one of the slowest in CT to get power restored, 45% of people are still without power. I was at PT on both Wednesday and Friday, and they have half power. I have never seen anything like it before, some outlets work some don't, some lights work and some don't. There are a few buildings in the area like that, it is really insane.

In medical news, Tuesday I go for what was supposed to be my last injection but now is my second. I will have to reschedule my last injection then because HSS said they would call sometime during last week but we had no power or phone so it would not get through. Unless I get a new prescription for PT I only have one week left. Besides that I am counting down the days until I see the rheumatologist so I can get a better treatment plan as far as my hips are concerned.