School Troubles

[GwenVG]

My last post was about my school, and now this is just an update.

Honestly nothing has changed and I fear that nothing will. My mother is filing a lawsuit against my school for illness discrimination. And recently my so called ‘friends’ have begun to bully me and make fun of my PCD. They say its all in my head, I don’t try, i’m wasting my potential, and that I want to be treated differently. And I hate being seen as the sick girl at school. People think I just don’t make an effort to come to school, but at this point its not good for my mental health to continue to go through this abuse from staff and students.

For example, I walked into the nurses office last week and she laughed. She laughed just because she saw me walking in. Its like they don’t believe I actually have a disease. And teachers constantly make comments like “well if you actually came to school,” or “oh you still do go to school here.” And one teacher actually told me he wasn’t going to give me special treatment; even though I have a 504 plan.

My principal gave me a form for my doctor to fill out. The basis of the form is that if she fills it out I will be hone tutored for the rest of the year. I saw my pulmonologist yesterday and she will be speaking with my school tomorrow.

On a different note, I have recently been having a lot of fatigue. I’ve been sleeping way too much and i’ve just been exhausted. I was tested for a UTI, Mono, and Lyne disease and they all came back negative. Anyone have any ideas or suggestions?

[TerryBun Administrator]

I hope your school will understand more about your PCD, once your doctor has spoken to them.

[fcfilice]

First don't listen to your friends in fact ignore and forgive Ignorance. Second you are not alone there are many of us with PCD. Be brave and stand up and be proud of yourself because despite having respiratory problems you are trying to better yourself by getting an education. Don't let someone else ignorance be a reasons to stop trying. Finally if the nurse stills laughs at you next time you visit then I would suggest having your mom contact the nursing association in your state to voice a concern.

[branch9]

Hello, Gwen,

I just cannot believe the unprofessional behavior of your school staff. That would NEVER happen in my school district. That said.... I've often thought (and then I heard someone on the radio say), if you had cancer, everyone would be at your door with a casserole, and doing all-school support projects. But if it's not cancer, people don't respond with the rush of support. Fortunately, we don't have cancer, but because our disease is more obscure, we don't get the recognition or support.

I, too, have been sleeping too much and feel unexplained fatigue. Is your region experiencing a very slow, cold spring? I think weather can be felt in my body. My yoga teachers have been devising special classes to help us deal with the weather.

However, fatigue can be caused by so many, many things, including discouragement and depression and negativity. Sometimes you have to get up and get out to the right place, or the right people. Even though you don't want to.

This may not get to the root of your fatigue, but the right kind of yoga can make you feel better, physically and emotionally. But it has to be gentle, restorative yoga. Not fitness yoga (don't go to a gym), or "power yoga" or hot yoga. Those are pretty much the opposite of true yoga. Bring your own mat, so you don't share germs from the studio. Also, you usually need a yoga blanket and a block, but I don't bring those with me.

My pulmonologist supports my doing yoga. He has anecdotal information that it helps your breathing. While I cannot say that yoga makes my lungs better directly, it does promote deep breathing. Mostly it promotes a peaceful body and mind, contributing to my quality of life. But you have to find the right studio. You may need to try different studios or teachers till you find someone who resonates with you and makes you feel peaceful and calm. It makes you stronger, too, especially if you're laying around a lot.

At my yoga studio, we even have a teacher who has numerous special trainings, and she goes to the homes of people with severe physical ailments. I wish you could work with her. She is very loving, and very skilled.

Keep reaching out, Gwen.

Anne Marie