Anxiety

I've given myself a bit of homework to do recently; don't let my anxiety rule my life. It's a hell of a lot harder than I thought it would ever be.

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.

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!

*http://www.fibrohugs.org/index.php?option=com_content&task=view&id=10669&Itemid=46

Additional links:

Great articles:
1. http://www.education.com/magazine/article/Universities_For_Students_Disabilities/
2. http://www.newmobility.com/articleViewIE.cfm?id=122

Laurie Edwards' book:
http://www.amazon.com/Life-Disrupted-Getting-Twenties-Thirties/dp/0802716490/ref=sr_1_1?ie=UTF8&s=books&qid=1250741866&sr=8-1

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.

Do Doctors Deserve Our Money? I think not.

So today was my second appointment with my new pain management doctor, and I pretty sure it was one of the worst appointments I've had in a looonng while. My appointment was for 12:30 and they finally put me in the exam room at 1:20 (I was checking the time because I was annoyed), at around 1:45 they ask me to go back into the waiting room because another doctor's patient needed to be seen. What about me? I need to be seen too! So I begrudgingly go back into the waiting room and by now I'm literally in tears. I was in a ridiculous amount of pain this morning and the uncomfortable chairs and stressors at the hospital only escalated the pain. Finally they put me in a different exam room and she finally comes to see me around 2:00. It's been an hour and a half past my appointment. She says she's sorry and then promptly asks why my faces looks like it does. I respond in an exhausted voice, this is what pain looks like. She half-assed another apology. Then she told me to stay on the pain management regime and to come back in another 2 weeks. I ask for something for the pain and she tells me that she doesn't want to prescibe any pain killers because I'll get addicted to them. I don't think so. Regardless she saw me for about 10 minutes, if that. I left in much more pain than I arrived in and more frustrated than ever. Sounds like an awesome doctor's appointment.

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.

Gah!