Sunday, September 6, 2009
I'm a homebody. I like to be home with my family and animals (I think I'm becoming a crazy cat lady), in my room with my soothing candles, in my bed with my comfy linens. I like to be surrounded by what is familiar and soothing to me. I'm the type of person who carries everything she might possibly need in her purse, just in case. It's who I am, and because I've let my homebody self rule my life, I've really really become anxious about going on trips or sleeping over my boyfriend's or friend's house. Instead of thinking of all the fun I would have, I think instead of all the possibilities of things going wrong. I could be in a lot of pain, my stupid stomach could act up and cause some embarrassing situations, the bed might make my pain worse, I won't have my comfort movies or TV shows that I record, etc.
It's tough. Especially when it starts affecting my relationships with other people. Particularly when I just got into a new routine where I go to bed much earlier than my friends and boyfriend. I also don't get to be surrounded by all of my pillows that ensure that I don't twist and turn resulting in a very sore, grumpy Jenn.
I know I'm making a bigger deal out of this than I should. People do it every day. And heck, I'm not even going to be away for more than 24 hours. I tell myself that and it seems to only make matters worse. I swear I'm slowly becoming more and more of a hermit. But I'm going to do it, come hell or high water.
Sunday, August 30, 2009
1. The illness I live with is: Fibromyalgia and Osteogenesis Imperfecta
2. I was diagnosed with it in the year: Fibro: 2005 OI: 1997
3. But I had symptoms since: Feels like forever
4. The biggest adjustment I’ve had to make is: Planning ahead and stopping when my body tells me to
5. Most people assume: I live with a "normal" amount of pain and that I should just deal with it
6. The hardest part about mornings are: Everything-- I hate mornings, my body is ridiculously stiff
7. My favorite medical TV show is: House!!
8. A gadget I couldn’t live without is: My cell...I don't really use gadgets to help my Fibro
9. The hardest part about nights are: Getting to sleep, sometimes the pain is too bad to let me sleep
10. Each day I take __ pills & vitamins. (No comments, please) 8
11. Regarding alternative treatments I: am open to them and welcome any suggestions
12. If I had to choose between an invisible illness or visible I would choose: Is neither an option? lol I suppose invisible, that way I can appear to be just like everyone else
13. Regarding working and career: I'm scared of what limitations my illness is going to create for me and that I'm afraid that people will not respect me as much as my peers
14. People would be surprised to know: That I really struggle with the emotional and mental aspects of being in pain all the time
15. The hardest thing to accept about my new reality has been: That I can't do everything I've want or have wanted to.
16. Something I never thought I could do with my illness that I did was: ?
17. The commercials about my illness: provide a totally unrealistic picture of what Fibro is like
18. Something I really miss doing since I was diagnosed is: Being relatively carefree
19. It was really hard to have to give up: Doing all sorts of fun activities with my friends
20. A new hobby I have taken up since my diagnosis is: Blogging
21. If I could have one day of feeling normal again I would: Play sports and run and laugh and have great sex lol
22. My illness has taught me: To be patient
23. Want to know a secret? One thing people say that gets under my skin is: everything (regarding my illnesses)...stop giving me advice if you have no idea what I'm going through
24. But I love it when people: Understand me and offer to help me with something, or completely understand that my pain limits the things I can do
25. My favorite motto, scripture, quote that gets me through tough times is: way too many to list
26. When someone is diagnosed I’d like to tell them: it's time to get organized and don't settle for something--fight for what you believe is right
27. Something that has surprised me about living with an illness is: How much wiser and well-versed I am because of the situations I've been through
28. The nicest thing someone did for me when I wasn’t feeling well was: simply hold me and tell me that they understand and that they will help me get better
29. I’m involved with Invisible Illness Week because: We need to become visible!
30. The fact that you read this list makes me feel: Honored
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Wednesday, August 19, 2009
For those of you who are not familiar with services provided to you on campus:
"Section 504 Subpart E of the Rehabilitation Act of 1973 requires all post secondary schools (college and vocations), who receive Federal aid, to provide an equal opportunity to all handicapped students to all programs and activities. A handicapped person is 'Anyone with a physical or mental impairment that substantially impairs or restricts one or more major life acitivities, such as caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.'"*
There is a disability office on all campuses that is available to those with mental and/or physical disabilities. For someone with a physical disability they provide things such as help with parking (my college allows me to park in the handicap spots in all lots including faculty and staff lots--HUGE help), referrals, registration, providing a notetaker if writing for prolonged periods of time affects you, as well as being a mediator between you and your professors. They also help a great deal with those who live on campus, but since I'm a commuter I'm not too familiar with those accomodations.
The disabilities office will provide you with a letter to pass along to your professors giving a brief run-down things you need help with. For example, my letter essentially and politely says that I cannot be discriminated against and that I need extra help with some things, such as: extended time during tests, exams, quizzes, in-class assignments and use of a computer for essay exams. It also states that I have flare ups and that my conditions may cause me to take additional breaks and I may even miss classes due to pain. The letter ends with the office asking that my professors be lenient with their attendance policies and allow me to make up any missed work.
Some colleges are better than others but it's worth a try! You never know, you're school could be a hidden gem. In fact, I found out through Laurie Edwards' book "Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties" that DePaul University in Chicago has a Chronic Illness Initiative to provide help and support to those with chronic illnesses on campus. How awesome is that!?
College life is stressful enough, we need to make this environment as accessible and easy as possible. But remember, the disability office won't seek you out, you have to go to them!
Laurie Edwards' book:
Saturday, August 8, 2009
I spoke to my pain management doctor about this and she replied snottily with "Well what do you care, you don't work and school is on break?" Uhhh I care because I'd like to have a life. Hell, I'm pretty sure I'd be happy with being able to get all my laundry done. So she's going out the window. I can't tolerate that attitude.
To top it off, I haven't noticed any change in my pain. In fact, I think the pain may be worse. It seems like this pain is more exhausting, more draining. Typically when I'm in pain I get this stubborn streak and bust my way through it (I pay for it later, of course). But this pain, I'm lucky if I can get out of bed. It's particularly tough now because I spend a lot of time going to my doctors, 2-4 times a week. So I have all these engagements that are eating up my time on top of this stupid medicine.
It's tough. I was speaking to one of my doctors and he asked if I was experiencing any sadness. Uhh no. I'm angry and frustrated and irritated and I want to scream at the top of my lungs. I want a vacation from my body.
Wednesday, July 29, 2009
1. Candles--I always have a candle going when I'm in my room. My favorites are all from Yankee Candle and are Spiced Pumpkin, Spiced Cocoa, Creme Brulee, Vanilla Cookie, and French Vanilla. As you can tell I'm all about making things smell like I've baked all day long =) Savvy consumer hint: check out and see if there is a Yankee Candle outlet near you...I always make around three trips a year to our outlet just for Yankee Candle and save tons of money!
2. Hot tea-- I only drink Cozy Chamomile Herbal Tea and Mint Medley from Bigelow Tea.
3. Music-- My relaxation music is my classical playlist on my iTunes. It includes all of Bach's Brandenburg Concertos (2, 5, and 6 are my favs!), Clint Mansell (he composed some amazing songs, especially the song from Requim for a Dream), David Garrett, all the songs from the Harry Potter and Lord of the Rings soundtracks, and all of the Trans Siberian Orchestra songs. My playlist has a bunch of other pieces, but those are my go-to songs.
4. Books-- There is nothing more relaxing to me than getting lost in a fictional (or sometimes a nonfictional) world that is so different from my life and my set of problems. It's nice getting wrapped up in someone else's life.
5. Comfort Food-- Unfortunately none of my go-to comfort foods are healthy, but hey, they do the trick! =)
6. Baths-- Take a nice warm bubble bath surrounded by candles with soft peaceful music in the background.
7. Expressive Art-- This can take many many forms, but I tend to either write, scrapbook, or make art journals. Sometimes I vent out about the stresses of life or I just scrapbook about silly stuff.
8. Movie/TV Night-- Plan a relaxing night in your PJs with snacks while watching your favorite movies or television shows. My go-tos are Gilmore Girls, House, The Big Bang Theory, the Harry Potter movies, or the Lord of the Rings Triology.
9. Breathing Exercises-- The only one I find to work is this: breathe in the good and breathe out the bad. While I take a deep breathe in I visualize fields of flowers, lit candles, or a warm snuggly bed. On the exhale I breathe out all the pain, stress, and heartache from the day. It really does work!
10. Hug!-- Hugs are universally great.
What are you waiting for?! Go off and relax!
Monday, July 27, 2009
I think I'm going to find another pain management doctor. I found that whole experience to be terrible and no one deserves to be treated like that. Isn't this a pain management office? Shouldn't you be trying to make your patients as comfortable as possible and make the experience as easy and pain-free as possible?
What really kills me is that the office has a policy where if you're late, you have to pay $100. Where's my $100? I was there exactly on time. She was the one who was late.
Sunday, July 26, 2009
I hate it. I hate the phrase and I hate that I have to say it. It's my own personal clause: Jenn, she'll have to see.
I feel like I can't make even the most impromptu plans anymore. I feel like it's a constant tug-of-war game between my social life and my health. Things I used to jump at the chance to do are passing me by. I'm either in too much pain or my stomach is feeling less than up to an adventure. I can't win.
I miss the days where a friend would call me up to see if I wanted to go into the city (New York City) and I would immediately say yes, excited and ready for the adventure. Now it's a different story. It's bad enough that I'm missing out on cool experiences but I also feel like I'm slowly losing my friends. They don't get it. They can't even begin to conceive the kind of pain I'm in. They don't know what it's like to be in horrible pain day in and day out. So they just don't get why I'm hesitant to go out and do x, y, or z.
I've read other blogs where the writers have said that they've just had to switch things around, mainly having more gatherings at their house. This is a great solution...for someone with their own place and own life apart from their immediate family. It's harder when you're a teenager or young adult. I live at home...a very very small house that barely allows its three inhabitants to breathe. There is no room to have friends over. And my friends are in the same situations, so having a gathering at their house is out as well.
It's hard in this transitional phase of life. We're adults, yet we still live like kids. It's not so great for our social life. Therefore I find myself saying "we'll see" far too often for my liking and it sucks. It really does.