Sunday, August 30, 2009

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

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

Wednesday, August 19, 2009

Diasbility Office on College Campuses

I'm a huge nerd so I'm actually excited for the start of the new semester but it's getting pretty stressful around here. Isn't it ironic that those of us with "special needs" tend to have the most bureaucratic crap to work through? The disability office at school just sent me a BUNCH of stuff I need to fill out, read, etc. While I appreciate what they're doing for me, I find it interesting that those of us who need less stress in our lives have all this extra stuff to work on lol.

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!


Additional links:

Great articles:

Laurie Edwards' book:

Saturday, August 8, 2009

Adjusting to New Medication

I was put on Lyrica, Elavil, and Zanaflex three weeks ago and I am really struggling with adjusting to these medications. The biggest problem for me is that they knock me out, completely. I have to take two in the morning and three in the evening. I like that the evening ones knock me out, because they're doing their job, but the morning ones? I typically like to stay awake in the morning/afternoon, it's just my personal preference. It's been three, almost four weeks and I'm still taking 3-4 hour naps every day. My days are gone now. I wake up, try to get some things done (typically doctor appointments, showers, eating, etc) and then I have to take my medicine and I'm asleep until 4/5:00. Then I wake up and am groggy for about 2 hours and then I have to eat and do whatever and then my day is gone. And trying to wake up earlier in my naps? That does not work. If I wake up before I "naturally" wake up I'm a mess, I can't formulate words, can't think right, and I'm sooo out of it. So that's out.

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.