Updates on School/life
When I last left off, I was about 12 hours away from my first jury of my music school career! I was terrified and stressed to the point that I made myself physically ill... I had a nervous stomach, and actually had a fever. Within an hour of completing my jury, my fever broke, I got super clammy, and felt like I was going to pass out! I was a joy to be around at that time - just ask Zoë ;).
In reality, though, I totally psyched myself out for nothing! I ended up doing really well on my jury!
So aside from making myself sick, finals week went pretty well - nothing too awful! I was super happy to find out I ended the semester with a GPA of 3.86. Not too shabby for my first semester, if I do say so myself :)
I came home for break, and had a relatively relaxing and very enjoyable time with friends and family! My parents gave my brother and I a fabulous Christmas (as usual!) as did the rest of our extended family!
I was really happy to see many of my high school friends over the break! I missed them all like crazy first semester, and was über happy to be reunited with them!! That being said, I really missed seeing all of my new Fort Wayne friends! It's definitely been good being back in the fort!
Classes started back up on January 13th (I think?). The transition back into classes was pretty difficult. I'm not a fan of 8am and 9am classes. Not one bit. I'm not really a morning person... Sight singing and aural perception at 8 in the morning? not my cup of tea.
I'm taking mostly the same courses as last semester, but instead of Intro to Music Therapy, it is now Functional Music Skills. We are learning basic skills on various instruments so that we can FUNCTION (see what they did there?) in the world as Music Therapists!
I'm also taking Guitar Class and switched to a new professor for both Theory II and Sight Singing II! His name's Dr. North, and if you don't know him you should be sad. Because He is quite possibly the most amazing professor in the world. For reals.
Not too much else is going on around here! Zoë and I have been apartment hunting over the pst few weeks trying to decided if we'll live on or off campus next year. I have an insane number of tests next week... I perform in class to audition for the Vocal Showcase soon... but other than that, not too much else is going on!
Updates on health
Sorry for not posting a health update in forever, y'all! I kept meaning to post one, but then wanted to wait until after my appointments at the beginning of January. But then things got insane, and the storms that keep coming through the midwest have been absolutely murdering me! (Yay for negative temperatures?)
Quite a bit has changed since I last updated you on the illness. I last left off in the beginning of November when things were going relatively ok!
At the end of November, the pain started getting worse again (as it always does during the winter months.) The Gralise was working pretty well to help keep it semi regulated. It is supposed to work as a slow release medication that covers you until your next dose 24 hours later. For me, I can feel it start to lose its effect after about 18 hours, but am actually quite pleased with that.
Right before finals week, though, we got one of those dreaded letters from the insurance company stating they would no longer cover that medication after the new year. We found a kind of loophole, so I called my doctor and had him call in regular Gabapentin for me to take for a few weeks until we could send an appeal to the insurance company so I could, in the end, go back on the Gralise. The trick worked, and I am back to taking Gralise.
The worst part is, though, that the ordinary Gabapentin (because the dosing was different) didn't work quite as well for me, which gave me an unnecessary amount of pain and ill-feeling throughout the Holidays. And, because this is just my luck and my disease hates me, it's not responding to Gralise as well as it did the first time around. Maybe it's partially the giant storms that have been cycling through, but I am going to take this opportunity to blame the insurance company just because I can. And because they're annoying. And deserve it.
My appointments with my Pain Management Specialist and Orthopedic Surgeon at the beginning of January had to, originally, be cancelled because of bad weather. My pain specialist did not have any other appointment available that week, so I had to wait and reschedule an appointment for my spring break in March. I wasn't too happy about that, because I was prepared to discuss more possible treatment options I've researched (will share when I have more info), but I got the refills I needed over the phone, and can survive for one more month without it.
My Orthopedic Surgeon was able to work me in on Friday afternoon of that same week. I hadn't seen him in a few years, so I was actually pretty excited to be back in his office and see how he and his staff were doing! So I got there and after waiting for a while, finally got to meet with the doctor. We talked for a few minutes about how I was doing, my hair color change, and a few other things. I told him I was concerned that the Osteochondritis Dissecans were back and/or worse.
He stretched my ankle around, felt it popping and catching, and ordered an X-ray. He couldn't really tell from the X-ray how big the lesions were so he, initially, wanted an MRI. After informing him (to his dismay) that I could no longer have MRIs because of the Spinal Chord Stimulator, he settled for a CT scan. Lucky for me, they were able to work me in that afternoon on site at their imaging facility. (I LOVE OrthoIndy!).
This was also the doctor that prescribed me a cane. (Like, I had a literal script that said nothing but 'cane' with my doc's signature. It was kind of perfect. A follow-up as to why this happened is in the next section!)
I had to wait a few weeks to get the results. To my surprise, though, my doctor called HIMSELF. Not a CNA, nurse, or even Physician's Assistant. It was my own doctor! He let me know that there was, in fact, a lesion. It happens to be a rather large one this time. He described it as being roughly the size of a dime.
To my dismay, he informed me that yet another surgery is in my future. I have yet to receive a call back to actually schedule this surgery, but the current plan is to have it in May after school lets out for the summer.
The surgery I need is called OATS. The OATS surgery, and abbreviation for Osteochondral Autograft Transfer System is a procedure that will, hopefully, help stimulate healthy cartilage growth in my ankle. The surgeon will go into my ankle and cut out the defective cartilage, along with a small part of the Talar Dome (bone). He will then cut into my right knee and harvest a cartilage and bone plug to fill the newly drilled hole in my ankle. He will screw it in to place, close me up, and hope for the best. (That was most definitely a shortened version of what it is, but you can find more info about it here if you're interested. Unlike the website, though, my surgery would involve both my ankle and knee.)
I'm hoping the surgeon will set me up with a Pain Ball like he did after my last ankle surgery. It helped keep the pain to a minimum, and I hardly felt the RSD flare (even though I could tell it was happening.) I'm very lucky to have a surgeon that not only acknowledges that RSD is a real disease, but does everything in his power to keep it from getting worse after a surgery. After many years of mediocre doctors, I'm very blessed to be at OrthoIndy where the doctors and staff are absolutely phenomenal.
That's about it for now. I'm coming up on the one-year anniversary of the Fibromyalgia diagnosis, which is always a weird anniversary to have. I think I'll deserve a Ben&Jerry's movie night with Zoë next Wednesday.
I hope all of you spoonies are holding up with the insane winter storms. Thank you polar vortex? This has been, by far, one of the worst winters I have ever experienced pain wise. Not yet sure if it's just the illness getting generally worse, or just rough because of the weather, but I'm definitely hoping it's just the weather! It's starting to get a little ridiculous! Keep on fighting, everyone! We can do this, if we do it together! shoot me an email/FB/tweet if I can do anything for you! I'm always here for you guys!
So I'm 19 and use cane..
So, by now most of you know that I walk with a cane. Some of you still might not know, but... now you do!
When I was first told I needed to use a cane, I was disappointed and immediately felt degraded and self - conscious about the whole ordeal.
In general, people don't associate the use of a cane with young people. It's associated with the elderly. Some people my age don't seem to comprehend the fact that it's perfectly acceptable for a 19 year old to be using a cane. Especially when a doctor prescribes it. Upon returning to school, I was kind of dumbfounded by the ignorance of people. While part of it could have been the fact that it was still a very sensitive topic, I felt like many people were staring at me, which made me feel very self - conscious. I know that people were looking out of curiosity (and from some, concern), it didn't feel good to be watched and judged (or so it felt.)
I expected people to comment on it and ask questions. I got a lot of "what on earth did you do to yourself?"s, a few "I like your cane!" someone even told me it was groovy. The most insane thing I heard, though, was from some lunatic in my speech class (before I dropped it.) We were leaving the classroom after it ended and she stopped and let me walk out of the door in front of her. She caught up to me and introduced herself and proceeded to ask, "So, is that cane thing for real? Like you actually need it or whatever? Or do you just like use it as an accessory or something?"
I just said "real." and walked away. I was pretty upset. First off, who asks that kind of question to a complete stranger?! It's unbelievably rude. I may have overreacted, but she was just an idiot I did not want to waste time or effort explaining things on. And second, who in the world, at 19, uses a cane as an accessory? Yes, I got a colorful cane, but that was to make myself feel better. I got a bright and colorful cane to help me feel better about the fact that I had to have one in the first place. Not because I wanted to accessorize my outfits.
The majority of people were not bad about the whole thing at all. The select few that made it worse, though, were really good at it. Grrr.
Anyways.. the hardest part of the whole cane thing, by far, was having to come to terms with the fact that the extent of my illness would no longer be as secretive. I was mostly concerned about people here in Fort Wayne. While quite a few people knew that I had issues with pain, only a select few knew the extent of it. My voice teacher, and two or three of my closest friends here.
I planned to keep it that way, too. In high school, many people knew about my pain issues. And while that was fine for high school, I didn't want to be known, yet again, as the girl with chronic pain issues.
Being on the cane, however, has made me realize I can't hide from it. People are curious, and keep asking questions. I'll usually just say 'it's a long story.' Which most people are totally okay with. I, on the other hand, am not. I psych myself out and start to feel guilty and kind of freak myself out wondering what they're thinking and what everyone thinks is actually wrong with me. A few friends have told me I'm totally insane for worrying about this, but I can't help it. I'm a worrier.
So, for my peace of mind, I give you the story of how I ended up on a cane;
I've lived with this chronic pain disorder, Complex Regional Pain Syndrome for over 7 years now (since I was 11), and have done everything in my power to avoid being wheel chair or cane dependent. But as the pain gets progressively worse, my ability to walk (normally) becomes more and more impaired.
For many years, I have walked on the side of my foot. I have a very small range of motion in my ankle joint because of the different disorders. Trying to stretch it beyond that range of motion (i.e. walking) is extremely painful. So, when I found I could walk on the side of my foot and alleviate even a small bit of pain, I went for it.
I knew it was a bad idea but, at the same time, I'll do anything to take even the slightest bit of pain away.
So, when I went to see my orthopedic surgeon in January, he was not a fan of this. He told me that in the end it will only hurt me more. The doc believes that I have done this in an effort to subconsciously protect my ankle joint. I don't know if that's completely true (I feel as though I walk on it this way because it's easier) but I'll give it to him.
Another concern is the stability of my ankle joint. My ankle is very weak because of both the CRPS and the lesions inside of the ankle joint. The doctor was worried about my ability to walk normally on the joint without a walking aid.
So, he prescribed me to walk with a cane "until further notice." He wants me to use this time to try and straighten my joint back out... to reteach myself to walk like a 'normal' person. The hope is that, after my surgery this summer, I won't have to use the cane (or a brace!) anymore. But, at this point in time, we don't know.
I'm really lucky to have so many friends supporting me over the past month while transitioning into this new lifestyle. I really appreciate everything everyone has done for me and has helped me figure out while working this out. You guys mean the world to me, and I know I couldn't have done this without you guys. You know who you are.
For the general public, I have some cane facts to share with you:
1. I know I walk slowly.
Yes, I walk a lot slower than most people. I know this. I appreciate that you're trying to be polite by not walking around me. But, in reality, it makes me feel bad about myself. I feel like an inconvenience! So please.. Don't hesitate to walk around me! It won't hurt my feelings or offend me one bit.
2. I know my limits.
Thank you for the concern for my well-being, but I will tell you when I can and can't do things. When I want to sit, I'll sit. When I want to stand, I'll stand. I know what my body needs, and don't always appreciate it when you force something on me. I'll let you know if an activity is too much for me. I can still go to the mall or target, and I can still walk for a semi-long difference. Trust me - I won't hesitate to tell yo when something is too much for me.
3. I can still do (almost) everything I did before.
No, I can't do EVERYTHING I used to do. It's hard to, say, go play lazer tag when you have a cane. I can, however, still carry my stuff and cook and get you things. It might take me longer because I'm doing things one-handed.. but again - I will ask you for help if I need it. Assuming I just can't do something because of the cane without even asking me is what makes me feel the worst about myself.
4. I don't need a handicapped parking spot.
A few people have asked me why I don't just get a handicapped parking sticker.. And I have a very simple answer - I don't want one. Some people counter with the argument that I 'need' one or 'would benefit' from one, which is true. But I have read too many horror stories of people my age with similar issues getting nasty notes on their car saying that they "shouldn't steal their grandma's parking pass" or that they "don't look handicapped enough." I don't want to deal with ignorant morons more than I have to. So, no. I'm not going to get a handicapped parking spot.
5. I have the right to hit you with my cane if you're mean to me.
This is actually totally false. I really shouldn't do this. But I put it in here because I could. However, if I'm sitting in the lounge and you steal my cane and start walking away with it, I do reserve the right to beat you with it upon its return to me. I mean, you kind of deserve it if you do this... You're stealing the ability to walk right out of my hands... jerk. :)
Thanks for checking out the blog, guys! I'll update again in the (hopefully) near future. I hope life is swell for all of my friends and family and the rest of the internet. For my spoonies; as usual, contact me via email, facebook, or twitter if you ever need anything!
Stay warm out there, everyone! And keep on burning for a cure!!