Wednesday, December 9, 2009
Makeshift Public Speaker
One of the big points I tried to get across was that no ones knows your body better than you do. This was one of the hardest lessons I had to learn when so many different people were telling me they had no idea what was wrong with my leg. At one point when I was almost 15 I even said to my doctor at the time “is what I have a tumor” and his response was “there is absolutely no way what you have is a tumor.” Well sure enough a few months later I was diagnosed with a desmoid tumor, but I digress. This was not meant to be about the a-hole doctor that I had at that time, but about how if there is something wrong with the way your body is working you should never let anyone make you think you are crazy. If you’re in pain or something is off, you need to peruse the issue until you find an answer that explains your problems or satisfies your soul. I tried to explain to them the idea of being your own advocate and trying to help them understand that it is okay to disagree with your doctor. I explained to them briefly about struggling with the previously mentioned awful doctor and how if you are not satisfied with whom you are seeing, then find someone else. A great support team of both loved ones and doctors is more important than anything else when facing an illness no matter how big or small. If your doctor makes you uncomfortable or doesn’t listen to you then how can they ever help you?
I really hope that I was able to communicate these messages to them and that they were able to see them through the rest of the story. They were very thankful for me coming and sharing my story with them and a few people even told me I was courageous and to be honest that blew me away. I have never seen myself as being courageous, I've always just been trying to live my life the best way that I can. One gentleman asked how I was able to get as far through college as I did with everything that had happened and I was so taken back by the question that I almost couldn't pull it together in enough time to answer. Luckily I did and told him that for me it was just the next step in my life. I told them that if I looked at cancer as being my whole life, that I would not have room for anything else fun or positive and its the normal things in life that keep me pushing trough all the other crap.
It was so refreshing to be able to be so completely honest with strangers and it was a bit therapeutic to go back and remember the roots of my illnesses. All in all I am so glad that I did it and I really hope that each one of them took something positive, no matter how small, from my story.
Monday, November 9, 2009
Blog failure
Lovelovelove :)
Friday, October 9, 2009
Forever Audrey.
It was like a portal into not only her life at that age, but parts of her personality that I had never known before. Like the picture of her in a 2 piece bathing suit in 1947 when that was pretty taboo. I realized maybe for the first time that she was so much more than the butt of my uncles jokes, or the woman who had 10 kids, or even the slightly cold German woman who was still there to give advice when it was needed most. It took these memories, both mine alone and other shared with me, to bring her to life as a real person instead of the ghost of a woman who died in my house when I was 10.
With these new thoughts and feelings I started a new day and decided to spend part of that day running some errands. On my journeys that particular Saturday I ended up finding a fantastic pair of cigarette pants, styled like the 40's/50's skinny jeans intended to show off those lovely mary janes. Like usual I was skeptical of them, because thanks to my mothers jeans (biological, not denim) I struggle with pants due to the big butt that she so graciously handed down to me :) But I was drawn to these pants because the style was called the "Audrey". It was clearly a sign that I was meant to have these pants and my sassy grandmother was calling for me to try them on. I know its all outlandish but they ended up fitting beautifully which is a miracle in and of itself. So I took the hint from mom mom and bought the pants.
And then again a few days ago I was out with my mother, again running some errands and we came upon a fantastic black and gray plaid jacket with big buttons. For those of you who know me, you know about my affinity for both plaid and especially big buttons. It was like a match made in heaven, and as I un-buttoned the jacket to try it on I saw a huge tag hanging inside that read "Forever Audrey". It was like another wonderful cosmic slap in the face, a way for me to remember that this woman who I lost so long ago is still around somewhere sending me these wonderful gifts.
I know this has been an extraordinarily sentimental and cheesy post, but hey when the universe calls out to you like that you just have to answer in any way you know how. I love you mom mom... thanks for everything!
Lovelovelove!
Thursday, October 1, 2009
My own advocate
Tuesday was a bit of a turning point because I had some time one on one with my amazing friend Christy.
I've mentioned her on here before but regardless lets re-cap the wonderfulness that is Christy: she was my room mate in college, her parents own a dairy farm, she loves kittens and ice cream (not necessarily together), she works at Penn as a nurse in a mostly oncology ward, and on more than one occasion I have referred to her as one of the loves of my life!
Anyway on Tuesday we went to the Phillies game (they won 7-4 yay!!) and we talked about pretty much everything I have been feeling. My worries about how my health and how more and more things are bothering me physically and emotionally. We talked about how I feel like slowly I am loosing control over ever aspect of my life and how terrified I am of the out come. I know that paranoia and control issues are two very common things that cancer patients suffer from after the initial fight, and lately I really been feeling all of those things weighing down on me. She asked me if I had thought about going to see a counselor of some kind. To be honest I have thought about it but I have a hard time finding someone I can connect with. I feel like I need someone who understands the struggles of the never ending patient and can help me get past these problems that are really beginning to swallow me whole. We talked about resources for cancer patients and I expressed that I would feel as though I would be taking a spot away from someone who had a more extreme case and could really use the help.
It was at this point that she pretty much verbally bitch slapped me and reminded me that although cancer has the stigma of a death sentence, that it's really not the case anymore. She reminded me that those resources are there for not only patients and survivors but for their loved ones and caregivers as well. It was like a light bulb went off in my head and I realized that this guilt of taking someones place was really another way for me to avoid what was really going on.
I took some time and thought it over for the rest of the night and into the next morning and while I was at work I received this e-mail "Hey Love, After everything we talked about tonight I thought it was strange that I would look on the New York Times website and find this article..." Attached was an article all about depression after cancer and reading it was like reading everything I had been trying to get out for months!
At this point I decided that I needed to do something and that I had to get over my childish side and take care of the most important part of me... my health. So this morning before work I woke up and called the livestrong cancer support and asked about counselors and other support resources in my area. Immediately I felt parts to me coming back. I know that I have a long road ahead of me, but I am proud of the steps I have made so far.
Tuesday, September 15, 2009
The crafters itch...
Thursday, September 3, 2009
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Mild cerebral Palsy, and aggressive fibromatosis or desmoid tumors.
2. I was diagnosed with it in the year: With the CP in 1989/1990 I think I was only 3 or 4 so it's kind of hard to remember that one to well. I feel like I've always known about it. The first tumor was diagnosed in in December 2001, when I was 15.
3. But I had symptoms since: My CP symptoms didn't really start to emerge until I was around 2-3 and my parents started to notice me walking on my toes. My Tumor symptoms started immediately following a surgery that I had for my CP in may of 2000 when I was 14.
4. The biggest adjustment I’ve had to make is: learning to let go. The CP is something that I feel like I have always known and has always been a part of me, but the tumors are like little unwanted invaders that I can't wish away. Since my cancer diagnosis I have serious control issues that have leaked into other parts of my life. I hate feeling like I have zero control in situations and when I feel like I'm not the one in control I tend to freak out a little. This is one of the main reasons I think that I now have to be sedated for my MRI's that I get every 3 months. I can't stand the idea of one more thing in my life that I can't control and being tied down to a slab for 4 hours is just a little to much for me. So needless to say I constantly have to remind myself that I have no control over my health and that things are going to happen the way they are meant to. It's not always the best solution, but I find comfort in the idea that the universe has a basic plan for me.
5. Most people assume: that I'm normal. When I was a little kid and had to wear a brace on my leg it wasn't a big deal. Kids are honest and if they want to know whats going on they will ask and once they get their answer that's the end of it. Once when I was in elementary school (I think like 2nd grade), a little boy in my class asked my dad what that thing was on my leg. My dad simply said it's something that is there to help my leg get better and the little boy just said "oh, okay" and happily walked away. Sometimes I wish adults were more like that because as I've gotten older (and gotten more issues) it's just gotten more complicated. People assume that when I'm parking in a handicapped spot that I'm some awful kid who is taking advantage of the system and they have not held back in making it their business. I can't even count the amount of times I've been stopped or yelled to from across the parking lot that I was in a handicapped spot and how dare I! If they were to come up to me and say, "hey why do you have that handicapped thing in your car", I would gladly give them an honest answer but unfortunately adults don't work that way.
6. The hardest part about mornings are: getting my legs to work and making sure there is enough coffee. My legs have a tendency to be extra stiff in the mornings and the first few steps are always painful. Now as for the coffee let me just tell you that it is a necessity no matter what is going on, but since I have spent the last 7 of 10 years on chemo I am almost always tired. I struggle with fatigue and some days getting out of bed is so difficult and I thank the universe for coffee every freakin morning. :)
7. My favorite medical TV show is: House. I'm not a big medical show kind of girl, I have enough medical drama in my life. But if I had to choose I would say house because I guess I have a thing for know it all secretly British guys.
8. A gadget I couldn’t live without is: my heating pad and my bath tub. There are some days that I come home and my body is so sore from walking like an old woman that I need to practically throw myself into a volcano to get enough heat for my muscles to relax.
9. The hardest part about nights are: making sure I get enough sleep. Like I mentioned before I suffer from fatigue from my chemo and I really need to plan and make sure I get more than enough sleep other wise I am useless the next day.
10. Each day I take 1 pill. Not including advil or pain meds because they are on a as needed basis.
11. Regarding alternative treatments I: have tried so many in the past. My mom was willing to try pretty much anything and unfortunately I think she in turn just got ripped off a lot. I have however had great success with chiropractors who do active release technique as well. I used to get the worst tension headaches in the world and had been to several regular chiropractors and still they would come back. But the active release really helped to calm my muscles enough to let my neck actually adjust.
12. If I had to choose between an invisible illness or visible I would choose: this. My issues aren't great but they could both be so much worse.
13. Regarding working and career: It's hard. There are some days where I just don't have the energy and sometimes the pain is just so much but I have lucked out. Right now I work for a doctor's office and they have been really understanding about my problems. It is scary though because I have had to miss lots of work for MRIs and doctor's appointments that I do worry all the time about them getting sick of it and letting me go.
14. People would be surprised to know: how blessed I feel that things are not as bad as they could be. I mean both of my diagnoses are minor compared to some and I have wonderful friends and family that are really great and understanding when I can't do something.
15. The hardest thing to accept about my new reality has been: that I will have to live with these tumors for the rest of my life. They will never fully go away and the only real goal in my treatment is peaceful coexistence.
16. Something I never thought I could do with my illness that I did was: ride a bike, surfing, dancing, and lots of others things that I have recently reclaimed from my childhood.
17. The commercials about my illness: really don't exist. You see ones for CP but that is so drastically different from mild CP. As for the tumors a friend of mine who is a doctor told me that in med school when they mentioned this kind of tumor his professor said "you don't have to worry about it because you will never see it" Well let me tell you buddy... HERE I AM!!!!
18. Something I really miss doing since I was diagnosed is: nothing. The year and half in between my surgery and my tumor diagnosis was hell. I was shuffled around from doctor to doctor and was made to feel like I was crazy. If anything I'm at the point in my life when I am forcing myself to reclaim things that I have lost.
19. It was really hard to have to give up: dance classes. I took ballet for 12 years as a kid and finally in high school it just got to hard on my legs. I wanted to be a ballerina as a little girl and to be honest I was pretty good, so to have to walk away from my dancing background and to watch my talent and flexibility slowly fade was so awful.
20. A new hobby I have taken up since my diagnosis is: crafting of all kinds. I love to knit and sew and make pretty much anything. I can't just sit still and watch TV because I get to antsy so I found ways to occupy my mind since I can't just go out and run around anymore.
21. If I could have one day of feeling normal again I would: I do have normal days. When I'm not on chemo I actually feel pretty fantastic if my legs are cooperating.
22. My illness has taught me: to just take life as it is. I have become such an optimist that sometimes I can be slightly irritating. I am the person who is always trying to find the bright side to everything.
23. Want to know a secret? One thing people say that gets under my skin is: when I was in high school and still really angry about everything it was "I know how you feel". Especially when they came from someone who's biggest health problem had been the flu once. But now I'm really not sure that I have one specific thing that irritates me as much as that did.
24. But I love it when people: are not uncomfortable when I make a joke about having cancer. I absolutely adore it when my friends jump right in and let me know that its okay that humor is the way I get through it.
25. My favorite motto, scripture, quote that gets me through tough times is: "The remedy is the experience" I love it so much I got it tattooed on my thigh to remind me that only cure for it, is to live it.
26. When someone is diagnosed I’d like to tell them: I'm not sure that I would know what to say honestly. The first things that come to mind are all to cliche and I know would just sound fake so I think a hug would be in order and then I would see how it goes from there.
27. Something that has surprised me about living with an illness is: learning what true friends are. Being so young when diagnosed with cancer is really scary and none of your friends have any idea what any of that means. It helped me weed out who really cared and was willing to be patient with my illness because they loved me.
28. The nicest thing someone did for me when I wasn’t feeling well was: I have mentioned it several times already but I have amazing friends. When I found out that my tumors were growing again (one of the many times) my college roommate took me out to cheer me up. We got coffee, did some shopping, and drove around just talking about everything. I think the best thing she could do was get me up off the couch and let me talk it out until I got out of the sadness and was ready to joke about it. I think we laughed harder that night then we had in a long time and I loved that we were laughing in the face of cancer.
29. I’m involved with Invisible Illness Week because: only through awareness can we avoid false assumptions.
30. The fact that you read this list makes me feel: honored and heard.
Lovelovelove,
Bridget
Wednesday, August 19, 2009
Hump day blues
Thursday, August 13, 2009
Autumn Blues
Every leaf speaks bliss to me,
Fluttering from the autumn tree.
-Emily Bronte
For some reason this week I find myself longing for fall. I think I am just longing for the carefree sense of life I feel when i can spend my days in sweaters and jeans. I am always at my most happy when I am comfortably bundled and I miss the feeling of a scarf blowing in the wind. I also think its because starting in the fall of last year I began going through this weird frumpy phase where everything I wore or purchased was over sized and un-flattering. It continued on through the winter and it wasn't until recently that I sort of woke up and realized that I can only feel beautiful when I send beauty out into the world. So that is what I have been doing in every way I can. Not only have I been trying to make my work wardrobe feel more like me, but I have been trying to be as kind and generous to those around me as I can. An amazingly smart and wonderful friend of mine is working on a life theory about how "we can only expect kindness from others if we send it out ourselves" and that is exactly what I have been trying to do; and fall is the perfect example of the world giving as much of that beauty as possible to me.
I have lived all of my life here in this small corner of the world and very ignorantly I assumed that the rest of the world had just as beautiful of a fall experience as here. That is not the case, however. Most of the world is denied the beauty of changing leaves with their vibrant colors and earthy smells. I really think fall is one of the main reasons that no matter how far I travel I know I will always end up back here. Fall just feels like home.
For me it means adding so many amazing elements to my life and brings back so many amazing memories... it's leaves, trips to the farm, a bundled existence, blues music, local bands, picnics in the park, pumpkin flavored coffee/various pumpkin treats and just quality time with the people I love. So as much as I hate to wish away the great things about summer, there is a huge part of me that is so ready for the majestic-ness of fall.
Monday, July 20, 2009
home away from home
I can still remember vivid parts of the day my dad taught me to surf. I was 8 or 9 and we were in wildwood with my family. We had to get up early before the life guards were on duty so my dad could be on the surfing beach without a board. He took me out on this little board that was most likely like 7 ft but at the time seemed huge. I was wearing a one piece bathing suit with blue in the middle... I remember this because the surf board had two dolphins on it and my dad kept telling me to line up the blue in the dolphins with the blue in my suit so that I wouldn't slide forward and nose dive. After learning the basics of when to paddle and several wipe outs I finally stood up on my first wave and it was one of the most glorious moments of my young life. I still look back on that memory as one of my favorites of my childhood and yesterday felt like a walk down memory lane.
My best friend Melissa and I made our way down to the beach early and paddled out and despite the lack of waves (and my lack of arm strength these days lol) I got a feel again for what it felt like to be on a board. My goal is to spend some time reconnecting with my body to improve my balance. One of the downsides of Cerebral Palsy is balance issues and I'm sure the weight I've put on from chemo doesn't help but I am optimistic that by next summer I will be back up on that board.
For years I have wanted to find the courage to get back up on that board and a few months ago the universe threw me the opportunity to find the inspiration I needed. One day at work while playing around on the internet I discovered life rolls on and their 'they will surf again' events and was moved to tears. I decided that I wanted to help in any way I could even if that meant handing out water and a few weeks ago I volunteered at my first event. I saw these amazing people, most of whom cannot walk, get on that board and I realized that I have been to afraid for too long. I've already started dancing again despite my leg and I decided that it was time to renew my love for surfing.
It was a glorious vacation filled with friends, family, love, and surprising success!
Lovelovelove!
Thursday, July 9, 2009
Understanding Invisable Illness
With this new attitude I decided to finally make my first mark on the Understanding Invisible Illness discussion board in the hopes that some someone else can see it and be inspired in the same way many of these people have inspired me.
If you know anyone who suffers from an illness of any kind and is in need of support please send them to this link where there are people from all over the world with all kinds of illnesses who just want to help.
Lovelovelove!
Monday, June 22, 2009
Fighting the urge to run...
-I am in no way cut out to work in an office
-It is very unlikely that I will ever make art beautiful or provocative enough to move people in the way that is required in order to make a living on calling myself an 'artist'
I am realizing that at this point this is just me ranting and it's time to stop, suck it up and go to the craft store... such is life.
Wednesday, June 10, 2009
A farmers life for me.
This past weekend my friends and I ventured out to Pottstown for "fun on the farm". It's an event of sorts that we do every year at our friends farm (or really her parents farm), and it usually consists of varying activities that are possible on a farm like playing with cows, a hay ride, a bon fire and tons of food. My favorite part however, is spending a glorious amount of time outside with wonderful people. This year we were blessed with gorgeous weather that provided a wonderful backdrop to our country shenanigans and while enjoying the air and the company I realized just how much I love being out in the country. Being in a place that is so natural and so open just makes my soul feel brighter. It's hard to explain but for a girl who didn't set foot on a farm until she was 18, it's amazing how someplace so new can automatically feel like home.
Monday, June 8, 2009
So this is me...
So this is me, Bridget, a super huge hippie/nerd who loves music, theater, and is a "kid with cancer." LoveLoveLove!
Wednesday, May 27, 2009
What I want to be when I grow up...
So last night I was hanging out with some friends from high school and my friends girlfriend and I were talking about random things and I discovered that she went to school to be a librarian. Upon this discovery I made an important decision in my life and that is that if ever schools found a need for a librarian of music that I would be perfect for the job! Now I'm not saying that I have all of the knowledge required but I do believe that the job would be one of the few things on this earth that excite me enough to make me want to learn all that there is to learn. So as of yesterday this jobs has been added to the running list of "what I want to do when I grow up". Here is the list in it's entirety with the newest edition...
What I want to do when I grow up (in no particular order)
- Music Librarian
- Street Artist
- Artist of any kind really
- Shop owner (To sell art, clothes, graffiti supplies, and whatever I make)
- Broadway performer
- Singer in a kick ass band
- Talent scout for a record label (not a major name one)
- Lotto winner (doesn't really count but I'm still hoping real hard)
- Costume designer for a good theater
- Commercial jingle singer
- Art gallery owner
- Director of fun and games
Tuesday, May 26, 2009
When you live your life with an appreciation of coincidences and their meanings, you connect with the underlying field of infinite possibilities. – Deepak Chopra
This quote is the current theme for my life. I live for the little moments that make my heart swell and help me realize that something is paying attention to the little and sometimes seemingly insignificant thing I call my life.