Forever Audrey.

For some reason recently I have felt like the universe is pushing my grandmother and I together in the weirdest ways. I always had a great relationship with my dad's mother but when it came to my mom's mother I had fewer memories and sadly less to hold on to once she was gone. But recently I have been reminded of her in so many silly little things. It started a few months ago when my mother and I were hanging around looking at old pictures and she brought out some of her mother's old scrap books. I knew that mom mom (as she was affectionately known to us grand kids) had an affinity for making scrap books because for years after she died we had most of them in our house and believe me when I tell you that there were close to 100. They were a great way to feel close to her but with there being so many it was an easy task to miss out on the most important ones. Anyway, my mother randomly pulled one of them out of the closet and it just so happened to be the first one in her series... the one she started when she was just about 16. It was one of the coolest things I had ever seen, not just as her grand daughter but the nerdy woman's history geek inside of me was jumping for a joy a little as well. There was everything from pictures from plays she was in while in high school, to real dance cards from the late 40's, and even the ring on the cigar that was given to my grand father when he bought her engagement ring.

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!

My own advocate

Lately I have been trying to take positive steps forward in almost every aspect of my life. I'm slowly realizing that I can no longer rely on others to figure out the solutions anymore. I think that its one of the parts of "growing up" that I have struggled with most. When your sick as a kid your parents are your life line, but at some point you have to allow yourself to step up to the plate be your own advocate. I've spent a lot of time over the last few months trying to regain things that I had to sacrifice to my disease because it was to hard, to painful or I was afraid of getting hurt. And as great as it was to feel in control of those little joys, they were really a momentary distraction from reality. For months I have felt as though I am losing control of so many aspects of my health and I have continued to justify my avoidance of them. Money, or lack of it, has been my main source of denial by telling myself that I just can't afford it right now. Which, in part, is true, but that hasn't stopped me from buying that pair of boots to cheer me up when I'm having an especially crappy day. If I could only learn to stop myself from getting the boots, and put that money towards a co-pay, I could actually go and see the many doctors I have been avoiding.

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.

The crafters itch...

When I got home from work last night I felt like something was missing and when I reached down to grab a scarf that I am knitting I realized just what it was. Usually at least some small part of my weekend is spent crafting and because of my sisters visit this past weekend I didn't get to fulfill my craft quota for the week. So since Tuesday is an early day at work and I get done at 2, I have decided to spend the rest of the day listening to music, drinking coffee and doing as many craft as humanly possible! God I can't wait... one hour to go.

30 Things About My Invisible Illness You May Not Know

I found this today on my friends facebook group (understanding invisible illness) and I read some of the other people posts and found it really interesting. I think if anything I'm really filling it out more for me than anyone else, but I hope you enjoy it regardless.

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

Hump day blues

I feel like I've lost all creativity with words. I used to be reasonably talented at stringing together a sentences that at least made me feel uplifted. But for a few years now i feel like there is part of me that was suffocated a long time ago by term papers and more recently memos. I know that I am not a unique snowflake, and that every feeling I have felt is only a repeat of a feeling that hes been lived out by others before. But where do I draw the line at thinking like this? Has this whole life been lived by someone else? Has it been repeated so many times that the soul that continues to inhabit it has lost all lust for the creative? I fear that this "normal life" is not what I was meant for; and that being forced to live it, whether because of social stigma or monetary morose, will eventually kill me. It is only in creating something remotely beautiful do i feel alive. If only I could convince myself that I send out the most amazing/breathtaking/elegant office memos that I could possibly survive this worn out life. Unfortunately, I am a terrible liar.

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.

home away from home

I spent the last 6 days in my favorite place in the whole world, my great uncle Bill's house in wildwood crest NJ. I grew up going there just like my dad and like him I can never get enough of that house! It's 102 years old and has been in our family since 1940. Some of my favorite childhood memories are in that house and the ever changing company that inhabits it. I learned to surf on that beach 16 years ago and just yesterday I tried it again for the first time in years. I had to give up on surfing for a while after my last couple surgeries because my ankle and my balance needed serious time to recover.

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!