Tuesday, March 25, 2008

Support Group Tonight!

Today is the sickle cell support group. I'm actually excited and looking forward to going, I feel like I've been waiting for them all month long. I wanna ask about the avascular necrosis and I'm supposed to take some L-Arginine over there to share with folks. It promises to be a real interesting session.

Tuesday, March 18, 2008

Avascular Necrosis

I'm worried about my hips. I've been reading lately about avascular necrosis of the hip and the more I read about it, the more I think I have it.

From what I understand, the sickling of cells causes the blocking off of tiny cappillaries, arterioles and venuoles (a sickle cell trait), which causes portions of the hip to stop getting blood. Then it dies off (necrosis). The main treatment for this is a hip replacement...can you imagine getting a hip replacement when I'm not even 30?? Yikes!

It's not constantly hurting, but sometimes when I walk I can feel my bones grinding, as if there is no synovial fluid between the ball and socket. It's mostly on my right side, but today I was feeling it a little bit in my left as well. I'm trying to stay on the positive side, but I want to call my PCP to order an Xray just to check. That way, at least I know either way and stop worrying about it.

Mind over Matter, Mind over Matter, Mind over Matter!

Anyway, in other news, my best friend is coming for a visit in May! Yay! I can't wait to see her and show her all around Portland.

Later darlings!

Thursday, March 6, 2008

Sickle Cell Support Group

Last week when I saw my hematologist, he encouraged me to be part of a support group. Norio has been pushing for me to join one for months, but I've always resisted. Besides the support I got from my friends, family, this blog and the online forum, I didn't think I needed anything else.

He proactively got the phone number of the group here in Portland and drove me there last Tuesday night. All the way over there, I kept telling him it was a waste of time and that we shouldn't bother going. "I don't wanna sit with a bunch of people going woe-is-me," I scathingly said.

Norio very stubbornly dragged me there, and we were late. Walking into the room, I crept into the room and tried to very unobtrusively take a seat. "Welcome!" the moderator said, inviting us to introduce ourselves to the group of about 15 people. I gave a stilted intro and then sat right back down, for some reason nervous as all get out. She seemed to understand this and kept on with the educational part of the session. About 10 minutes later, she broke the group up, and told us to interact.

Coming out of my shell was hard, but when I realized that out of the 15 people, only 3 of us had sickle cell, it became somewhat easier. One was younger than I was and very shy, and we hit it off almost instantly. Talking about how sickle cell affects me personally was more therapeutic than I thought. We rhapsodized about crappy veins, bad ER visits and life as a warrior. His mom and aunt were there as well and they were so sweet and encouraging.

The gab fest lasted for the rest of the 30 minutes and at the end of the meeting, I was exhilarated that I had come and so sad that it had to end. They are doing an event this summer, an annual telethon which Norio and I both signed up to participate in. I think it helped Norio as well, interacting with other family members and people that actually could understand the emotions he goes through on a regular basis.

The group meets again in 3 weeks and I'm so excited to go. It's the best thing that has happened to me in Portland so far and I'm so glad that we went.

If you ever have the opportunity to hit up a sickle cell group meeting, GO! There is so much to gain from interacting with others that are on the same level as you in this situation. Try it out, even just an online support group. You won't regret it.

Sunday, March 2, 2008

Getting Through Nursing School with Sickle Cell

Choosing nursing as a major was an easy decision for me to make. I've always been interested in being a nurse, especially since I noticed that when I was sick, the nurse was the one that had the most input into my well-being and care. I went straight from high school into college at Oakwood, and it was one of the most liberating experiences of my life.

For starters, I was 1600 miles away from my family and saw them only 4 times a year. The overprotective cocoon that I had been sheltered in disappeared and I actually learned more about myself and my strengths. My school counselor encouraged me to turn in the paperwork to the health clinic at our college about having sickle cell; and they in turn gave me a letter to give to all my teachers when I got sick.

Most of my teachers were really understanding and supportive, they knew what sickle cell was all about---hello, they were nurses! Luckily for me, I didn't fall sick at all the first semester. However the second semester, I had to start school 2 weeks late because I was in the hospital for 10 days in January.

All I did was place a call to any of my teachers in the nursing department, and they would spread the word. My teachers sent homework and teaching plans and my classmates shuttled them back and forth. I was still behind when I came back to school and there was a test that same week. I had the option of not taking it, but I didn't want to dread it for another week so I crammed my best with my friend Shay and took the test. Of course I failed with a 68% but at least it was out of my hair.

My school had a 100% pass rate on the NCLEX and they wanted to keep it that way. So you had to get 75% minimum grade on every class or you would flunk out. It was hard passing Med Surg with that low of a grade on the first test of three, but somehow, through God's grace and the help of my peers, I made it work.

When I was not sick, I amped up on getting all my assignments done to perfection and staying ahead of the curve. I was the top 3rd person highest scorer in my class, staying up late nights studying for hours and hours. Shay was a great influence (she was the top scorer), and she helped keep me focus and determined.

I won't lie to you, nursing school was hard--hella hard. But I truly think I was meant to be a nurse, so there was no way I wasn't going to make it through. This was one fight that sickle cell wasn't going to win.

So to all my warriors in school determined to fulfill their dreams and destinies, hang in there. It's tough but totally worth it.