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