Monday, September 27, 2010

Blogging Business

You may have noticed I'm not posting as frequently as I did before. There's a few reasons behind that.

First, my new employer has much stricter guidelines regarding social media. I really, really don't want to share a patient story that could be in any way tracked back to me or to my work. While I have some great stories I'd like to share, I'm just not comfortable quite yet. I'm hoping the longer I work there and the more pains I take to remain confidential/anonymous, the more open I'll be able to be.

Second, I don't have as much time. I have another blog and I've been doing more with that since friends and family like to check up on my new life. Also, when I'm writing there, I can write about whatever I want and not worry about breaching confidentiality! There's just a lot going on here and I have to be more choosy on how I spend my time.

Third, it used to be that I just had a hospice and bereavement scope. Now I have a pediatric, neuro-oncology, sickle cell, hematology, etc. scope. It's so broad and I'm not sure what you all want to hear about! There is so much I could write about for any one of those categories. As I've been learning at work, I've been trying to jot down notes of what might be useful to my Confessions following. If there's anything you'd like to know more about, please let me know.

Fourth, I don't want to lose sight of the fact that I am indeed a social worker! I can't just write about sickle cell and death and bereavement work. I need to write more about what it means to be a social worker and what my role is within my division at work. Since I'm still learning what that entails, you can expect that I'll be posting about it at some point.

Fifth, I think that I'll continue to post once or twice a week, possibly more depending on what I have going on and what topics are of note. I check the email connected to this blog about once a week so if I don't respond right away, please be patient. I'm sure the balance between work, play, and blogging will arrive sooner or later.

Thanks as always for reading!

Thursday, September 23, 2010

Emergency Plan

When your child has a chronic or terminal illness, it’s important to have a back-up plan in case your child requires an unplanned trip to clinic or hospitalization. Planning ahead will make these times less stressful.

Keep the hospital or clinic phone number near your home phone for easy access. Program the phone numbers into your cell phone.

Let your family and friends know about your child’s condition and what they can do to help. If you have other children, identify who else is available to take them to school/daycare and pick them up in case a clinic visit runs longer than expected. Also identify who is able to watch them during the day or overnight if your child is hospitalized.

Inform your employer of your child’s condition. You may need to miss work at times due to your child’s healthcare needs. You may need to utilize benefits through the Family Medical Leave Act; your human resources representative can tell you more about your employer’s policy regarding FMLA.

Talk to your child’s school or daycare about his or her condition. Make sure that they understand what your child needs to manage the illness and provide a plan of action for emergency situations. Request that the teacher stay in contact with your child during hospitalizations and absences. Talk to the school nurse about medication schedules and coping strategies.

Keep a bag packed in case of hospitalization. Keep it in a place that is easily accessible in your home. This way you can simply grab it and go.

Hospital Bag Checklist

  • Contact list (include family and friends that want to be informed or who may be tending to your other children or household needs)

  • Comfortable clothes (parent and child)

  • Pajamas (parent and child)

  • Underwear/socks (parent and child)

  • Toiletries

  • Deodorant

  • Shampoo/soap

  • Hairbrush or comb

  • Contacts/glasses

  • Snacks/ food items/money for cafeteria (patients receive 3 meals a day; one free guest tray is provided per room through Katie’s Helping Hands. Parents will need to bring their own food for other meals or buy food from the cafeteria on the 2nd floor. Snacks are also available in the Ronald McDonald Hospitality room on the 5th floor.)

  • Books/magazines

  • Toys/games


Anything else you would add to this list? You have permission to make copies of this handout but please credit Confessions of a Young(Looking) Social Worker as your source.

Monday, September 20, 2010

Sickle Cell and SSI

Many individuals with sickle cell disease do not show obvious signs of disability. Even though it is a chronic illness, it may not be easy to obtain financial benefits. Eligibility for Supplemental Security Income (SSI) is based on the extent of the disability as well as income eligibility. You must qualify in both categories to be determined eligible, which can make it difficult for individuals with Sickle Cell disease to qualify for SSI. One of the first questions parents ask me when their baby has been diagnosed with sickle cell is whether they can apply for SSI. The answer is generally no because most babies experience few complications. As the child gets older, this, of course, could change. SSI looks at a comprehensive picture of the individual’s condition, including the number and dates of hospital admissions, emergency room visits, acute visits, organic and physical dysfunctions, and the blood count, as well as the need for blood transfusions.

The information below is straight from the SSI website:

Hematological Disorder Guidelines

A. Sickle cell disease. Refers to a chronic hemolytic anemia associated with sickle cell hemoglobin, either homozygous or in combination with thalassemia or with another abnormal hemoglobin (such as C or F).

Appropriate hematologic evidence for sickle cell disease, such as hemoglobin electrophoresis must be included. Vaso-occlusive, hemolytic, or aplastic episodes should be documented by description of severity, frequency, and duration.

Disability due to sickle cell disease may be solely the result of a severe, persistent anemia or may be due to the combination of chronic progressive or episodic manifestations in the presence of a less severe anemia.

Major visceral episodes causing disability include meningitis, osteomyelitis, pulmonary infections or infarctions, cerebrovascular accidents, congestive heart failure, genito-urinary involvement, etc.

107.05 Sickle cell disease. With:

A. Recent, recurrent severe vaso-occlusive crises (musculoskeletal, vertebral, abdominal); or

B. A major visceral complication in the 12 months prior to application; or

C. A hyperhemolytic or aplastic crisis within 12 months prior to application; or

D. Chronic, severe anemia with persistence of hermatocrit of 26 percent or less; or

E. Congestive heart failure, cerebrovascular damage, or emotional disorder as described under the criteria in 104.02, 111.00ff, or 112.00ff.

Thursday, September 09, 2010

Invisible Illness

September 13-19 marks National Invisible Chronic Illness Awareness week. This year's theme is "Each One Can Reach One." You can participate wherever you are by leaving a sticky note with an encouraging message. Just add invisibleillness.com at the bottom of your note so that the finder can go to the website and get ever more encouragement. Notes have been found everywhere from public restrooms to the bulletin board at work. The goal is to "remind people that although they may feel like they are alone in their pain, there are people who do care and understand the unspoken language of invisible illness."

The highlight of the week is a 5 day virtual conference and it's free! There are 4 panelists every day and there will be a chance to call in with your questions.

Spend some time perusing the site for helpful articles for those living with chronic illnesses, like what to do if a friend thinks you're faking your illness or dealing with aggravations your illness creates. This is a great resource for anyone with a chronic illness. It is also great for those without chronic illness to see life from someone else's point of view and to be more understanding and compassionate.

Monday, September 06, 2010

Pinch me!

Are you ever going about your daily routine and the magnitude of what you do suddenly hits you? You see yourself in a particular interaction and you have to keep yourself from grinning because you get paid to do this!

This continues to happen to me on a weekly basis. I'm into my third month now and I still love it. (Talk to me again next month when on-call starts. The rose-colored glasses might start to fade by then! But even with this, compared to the amount of on-call I did before and the compensation I'll receive now, it seems doable.)

My latest pinch me moments:
-helping a teen with sickle cell and severe pain develop coping skills as another way of dealing with his pain besides medication
-meeting with the grandparents of a patient with newly diagnosed brain cancer
-explaining how SSI works when it comes to sickle cell (post to come soon)
-letting financially strapped families know about the wonderful resources available to them (brain tumor patients)
-interacting with the cutest kids
-a father of a patient (not mine) told me that the oncology wing was staffed by the most cheerful and professional people and this has made all the difference for him. Incidentally, he was a pretty cheerful person himself!

Saturday, September 04, 2010

Sickle Cell Awareness Month

September marks the 35th Sickle Cell Awareness month, since starting in 1975. It was recognized on a national level in 1983 when the House of Representatives passed the resolution.

I've only been working with sickle cell patients for a couple of months but that's long enough to know that so much more education is necessary. Education for the public, but also education for the patients and their families.

Sickle cell disease is an inherited blood disorder that affects red blood cells. Basically, the red blood cells don't get enough oxygen, which causes them to become sickle (or crescent) shaped. In sickle cell disease, red blood cells contain mostly hemoglobin* S, an abnormal type of hemoglobin. This makes it difficult for them to move through blood vessels and they can get stuck. This then causes less blood flow in that part of the body, which causes damage. This typically results in pain but there is a host of complications associated with sickle cell, including acute chest syndrome and stroke.

Thanks to newborn screenings, sickle cell is detected at birth but babies must have another positive screening before they are officially diagnosed. This is a chronic illness without a cure. If the child has a full-sibling, they can be HLA-typed and if there's a match, they may be eligible for a transplant. Otherwise, patients take penicillin for the first 5 years of life to protect from from infection. If a child under 5 has a fever, they are typically admitted to the hospital because of the complications related to sickle cell. If a child has sickle cell disease and starts having more complications, they may start taking hydroxyurea or get blood transfusions. It's not easy to live with a chronic illness but these medications vastly improve quality of life and can prevent complications from occurring.

If you carry the trait and your partner carries the trait, you have a 25% chance of passing sickle cell disease on to your child and a 50% of passing the trait on. Genetic counseling is important before SC patients become sexually active and/or are considering reproduction.

Other measures to improve health are staying hydrated and avoiding cold temperatures, as well as maintaining a good diet.

As the following PSAs show, sickle cell affects everyone. It is not an "African American disease" as is widely believed. Every race, every background, man or woman.




Please spread awareness of sickle cell disease in your community!

Friday, September 03, 2010

A Hero Inside You

Fair warning: you may get a little teary-eyed watching this video.

Karl Dimachki, a 31-year-old Australian construction worker was diagnosed with tongue cancer about a year and a half ago. He had his lymph nodes and half of his tongue removed. He was told he wouldn't be able to talk properly and wouldn't be able to sing ever again. He was told he likely wouldn't see any progress for 3 or 4 years, optimistically speaking. Dimachki didn't let that stop him. This past Tuesday night, Dimachki tried out for the Australian version of "The X Factor." His version of Lionel Ritchie's "Hello" brought judges and audience alike to tears.



I love his intro quote: "I'm just here to prove a point: If you have a dream, go on and do it, 'cause God will always put a hero inside you."

His story is inspirational to be sure. Will he make it far in the competition? I doubt it but he deserves the opportunity to reach for his dream. Who knows? He's come this far. He could prove judge Kyle Sandilands- and me- wrong.