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.
Thursday, March 6, 2008
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.
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.
Monday, February 25, 2008
Admitting I'm Not a Super Woman
I was at work last night, another late 12 hour nocturnal shift. Everything was going okay until around 4am when I got hit by major pains. It's unethical to be popping pain pills when I have the lives of other people in my hands so I just gritted my teeth and tried to bear it.
However, the L3s were not letting up and I ended up flopped on one of the chairs at the nursing desk. One of the nurses asked me if I was okay. In that split second, I could have flashed her a smile and lied saying that I was, but I didn't.
"I'm in pain."
"Oh really? You have cramps?" she asked me. "No, I have sickle cell anemia and it's acting up," I said in a monotone. All the nurses looked at me then, instant pity on their faces. Yuck! I was mortified and wished in that moment I hadn't said anything. "Do you want to go home?" the charge nurse asked me.
It was 4am, I had 3.5 hours left in my shift. I shook my head no slowly. It would be a real stressful thing to leave my coworkers in a lurch with extra patients each. What can I say, I'm a glutton for punishment. She seemed relieved I wasn't going to head home. "You should go lie down. Take a blanket and one of the empty rooms and we'll wake you up a little after 5," the charge nurse practically ordered.
I wanted to resist and push through the pain, but at this point even I knew it would be an exercise in futility. Next to getting pain meds in my system at that point, rest was the next best thing so I protested weakly at first but gave in when everyone insisted.
I'm always wary about telling my coworkers and people in general that I have sickle cell. Mostly because I don't want to be treated like an invalid or wallow in pity. But this is one instance that I'm glad I spoke up and let my vulnerable side show. I can't be a Super Woman every time.
An hour later, I woke up from my power nap with L2s but was able to finish the rest of the shift much more comfortably. Kudos to my coworkers for being so cool and picking up the slack for that hour when I was down and out.
Here is to surviving a potential crises. I'm home, rested and feeling much better now. Super Woman lives to fight another day.
However, the L3s were not letting up and I ended up flopped on one of the chairs at the nursing desk. One of the nurses asked me if I was okay. In that split second, I could have flashed her a smile and lied saying that I was, but I didn't.
"I'm in pain."
"Oh really? You have cramps?" she asked me. "No, I have sickle cell anemia and it's acting up," I said in a monotone. All the nurses looked at me then, instant pity on their faces. Yuck! I was mortified and wished in that moment I hadn't said anything. "Do you want to go home?" the charge nurse asked me.
It was 4am, I had 3.5 hours left in my shift. I shook my head no slowly. It would be a real stressful thing to leave my coworkers in a lurch with extra patients each. What can I say, I'm a glutton for punishment. She seemed relieved I wasn't going to head home. "You should go lie down. Take a blanket and one of the empty rooms and we'll wake you up a little after 5," the charge nurse practically ordered.
I wanted to resist and push through the pain, but at this point even I knew it would be an exercise in futility. Next to getting pain meds in my system at that point, rest was the next best thing so I protested weakly at first but gave in when everyone insisted.
I'm always wary about telling my coworkers and people in general that I have sickle cell. Mostly because I don't want to be treated like an invalid or wallow in pity. But this is one instance that I'm glad I spoke up and let my vulnerable side show. I can't be a Super Woman every time.
An hour later, I woke up from my power nap with L2s but was able to finish the rest of the shift much more comfortably. Kudos to my coworkers for being so cool and picking up the slack for that hour when I was down and out.
Here is to surviving a potential crises. I'm home, rested and feeling much better now. Super Woman lives to fight another day.
Thursday, February 14, 2008
I Have Bad Veins
One of the commonalities of sickle cell warriors is that fact that after a zillion hospital admissions and ER visits, eventually, our veins go into hiding from all the trauma. The medications that help us also help to scare the beejesus out of our veins as well as all those blood draws! My hands are scarred up from IVs and I don't even remember a time when I had good veins in my arms.
I'm down to my last good vein, and even that is getting hard and sclerosed. So in the near future if I keep getting sick, I'm going to have to put a longterm catheter in...yuck! These are the options for access that have been most frequently presented to me.
Porta-Cath: Also called a port, this is a closed access device that is placed under the skin usually on the chest wall. It's an outpatient procedure done under general anesthesia, and once you get it, the port can be accessed periodically as needed with a big needle that fits right in there. When you go home, they take the needle out and you just have the port still in your chest covered by skin. It's the most preferred for those on long term therapies, has the lowest risk of infection and is not detectable unless you are bare chested. It can be in you for months to years and will need period flushing with heparin (usually every month or so) to keep it from clotting up. I'm wary about having a lump on my gorgeous chest, but I guess you gotta do what you gotta do.
PICC Line: This is used for more short term IV management than the Port. It's inserted in the hospital by a certified nurse done in a sterile environment through one of your arms and threaded to the superior vena cava close to your heart. It can be in for a maximum of 6-8 weeks. They usually don't want to keep it longer because it has a risk of causing infection especially endocarditis. I've had 3 PICC lines all in the last 2 years and just have small scars that look like mosquito bites on my arms to show for it. Sometimes they leave it in after discharge for long term antibiotics or chemo.
Triple Lumen Catheter (TLC): This is in for the length of your hospital stay. It's usually placed in the larger veins of the femoral or jugular. If it's in your groin (Femoral) area, it has a high risk of infection, after all, your urinary & rectal tract are only a few inches away! Getting it in your neck is a real pain (I've had both). It may have 1-3 ports on it, which means you can get blood, some IV fluids and still get your pain shot through the other port. It has to be taken out at discharge though.
Those are the 3 main ones that I've come in contact with. My personal favorite is the PICC line, it's right in the middle for efficiency, ease of use and it's relatively fast to put in. A skilled nurse can do it in under an hour. So next time they mention any of these options, you are now in the know.
I'm down to my last good vein, and even that is getting hard and sclerosed. So in the near future if I keep getting sick, I'm going to have to put a longterm catheter in...yuck! These are the options for access that have been most frequently presented to me.
Porta-Cath: Also called a port, this is a closed access device that is placed under the skin usually on the chest wall. It's an outpatient procedure done under general anesthesia, and once you get it, the port can be accessed periodically as needed with a big needle that fits right in there. When you go home, they take the needle out and you just have the port still in your chest covered by skin. It's the most preferred for those on long term therapies, has the lowest risk of infection and is not detectable unless you are bare chested. It can be in you for months to years and will need period flushing with heparin (usually every month or so) to keep it from clotting up. I'm wary about having a lump on my gorgeous chest, but I guess you gotta do what you gotta do.
PICC Line: This is used for more short term IV management than the Port. It's inserted in the hospital by a certified nurse done in a sterile environment through one of your arms and threaded to the superior vena cava close to your heart. It can be in for a maximum of 6-8 weeks. They usually don't want to keep it longer because it has a risk of causing infection especially endocarditis. I've had 3 PICC lines all in the last 2 years and just have small scars that look like mosquito bites on my arms to show for it. Sometimes they leave it in after discharge for long term antibiotics or chemo.
Triple Lumen Catheter (TLC): This is in for the length of your hospital stay. It's usually placed in the larger veins of the femoral or jugular. If it's in your groin (Femoral) area, it has a high risk of infection, after all, your urinary & rectal tract are only a few inches away! Getting it in your neck is a real pain (I've had both). It may have 1-3 ports on it, which means you can get blood, some IV fluids and still get your pain shot through the other port. It has to be taken out at discharge though.
Those are the 3 main ones that I've come in contact with. My personal favorite is the PICC line, it's right in the middle for efficiency, ease of use and it's relatively fast to put in. A skilled nurse can do it in under an hour. So next time they mention any of these options, you are now in the know.
Sunday, February 10, 2008
Going to the ER with Sickle Cell
For some reason, the medical profession, especially in the US has a limited view of sickle cell. First of all, they think that people with the trait can't have pain---THAT IS A MYTH! Just because they don't have the full out disease, doesn't mean that pain doesn't exist in the life of a carrier too. On the sickle cell forum, I heard about the guy on the East Coast that has had the trait for YEARS but kept getting told that he couldn't be in pain.
What is up with that bullshit line, "You can't be in pain?" How do you know what my pain is? Are you in my body? Do you know anything about me that you think because a certain dosage works on you or others that it's okay for my pain as well? Pain is subjective bitches, so if I'm telling you I'm in pain...then hell yeah, I'm in pain.
Okay, before I get hit with the firing squad let me remind you---I work in the medical profession. So I see on a constant basis how we in the 'med profession' have a nonchalant attitude towards pain. If it's not your pain, you can't relate to it. So just try to help the person and stop hoarding the pain meds like you are paying for it our of your own pocket.
Yeah, it sucks the way hospitals and med. professionals treat us. I once was made to crawl out of the ED on my hands and knees, I was in so much pain and they just ignored me and watched me crawl. I don't want that to happen to anyone ever again, so let's arm ourselves with some knowledge.
Here are some tips that a sickle cell warrior should know before going to the emergency room:
- You have to find a doctor...just one, that is with the program. Once your doc is on your side, he can write standing orders for you at the ER that you visit. Most people don't know about this, but it is possible for the doctor to leave standing orders with parameters on your file with the emergency room. That way the ER doc knows what he needs to do to get your pain under control.
- Try using a hematologist or oncologist instead of an internal med. doctor. They have more compassion, especially the oncologists. Oncologists have a better relationship to pain management because cancer pts deal with alot of pain and tend to have high tolerance to pain meds just like we do.
- Stick to the same ER. I've noticed that when you go to different ED's you don't get a good history. They won't have you in their records and won't know your parameters. Also, it will look like you only get 1-2 crises a year instead of 4-6 if you play ED hopscotch. So find one that doesn't treat you too bad and go there often. That way they will have a thick file on you that they can refer to and realise from your labs that duh, you DO have sickle cell.
- When going to a new hospital, I always take my doctor's notes and medical folder with me, just in case they try to give me grief. Usually this contains a set of lab work so they know where my H&H usually hangs out at as well as what kind of pain meds I've been prescribed. In the medical field, you can never have too much information.
- Always try to have someone go with you, like your mom, sis, friend or man, someone that they won't walk over that will raise hell to get your pain under control. Your family/friend can be your greatest asset during this, they are your advocate and are there to see to your comfort and make sure things are done correctly. When all else fails, ask for the manager (yes, hospitals/emergency rooms have managers too!) I once filed a complaint with the nursing supervisor against my doctor and nurse, and it went up the channels until the CEO of the hospital came to apologize on their behalf. Never think that you have to take whatever they dish out---remember, you are the customer!
- Empower yourself. Learn as much about this ailment as you can so that when you get in the ED, if you are met with an ignoramus, you will be able to educate them. Just because someone has a medical degree, doesn't mean they know much about SCD. You are the most experienced person in the room because you've dealt with it everyday of your life. That's a whole lot of knowledge. So don't be afraid to step up and speak up for yourself.
Good luck my warriors!
Thursday, February 7, 2008
Vacation Plans
Okay, it's decided, we are going to MAUI!!!
WOOHOO!
I've never been to Hawaii so this is going to be a great one for me. The trip is planned for right after my current work contract, I can't wait!
In other news I'm doing great, not much to report on anything. My health is good, my job is okay, everything is good.
I'm doing research on a good diet for people with sickle cell. I do want to publish that once it's complete so if anyone has any ideas, please let me know.
Hugs,
WOOHOO!
I've never been to Hawaii so this is going to be a great one for me. The trip is planned for right after my current work contract, I can't wait!
In other news I'm doing great, not much to report on anything. My health is good, my job is okay, everything is good.
I'm doing research on a good diet for people with sickle cell. I do want to publish that once it's complete so if anyone has any ideas, please let me know.
Hugs,
Friday, February 1, 2008
Holiday Weekend
"Hey, lets go skiing this weekend," my hubby said this morning. I stared at him. "Baby...what is my name? Do you know me?" I asked staring at him drolly.
"Oh yeah," he continued with a laugh. "Skiing probably isn't good for you because of the cold and the high altitude..."
"Precisely. Let's go somewhere hot instead. Like an island in the Caribbean."
Now that is the perfect sickle cell warrior's vacation. Except I have to worry about flying there and back. Dayum!
"Oh yeah," he continued with a laugh. "Skiing probably isn't good for you because of the cold and the high altitude..."
"Precisely. Let's go somewhere hot instead. Like an island in the Caribbean."
Now that is the perfect sickle cell warrior's vacation. Except I have to worry about flying there and back. Dayum!
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