National Health Blog Post Month Day 28 – A Time to Give Thanks
What’s the one thing you’re most thankful for? Write a list of three things that you’re thankful for, excited about, or inspired by.
I am most thankful for my fat. My fat is a part of who I am, more than just physically. My fat has made me stronger, kinder, and a more resourceful person. My fat makes me unique. Despite the challenges in life having Lipedema, and the excess fat, have presented I take every moment as a learning experience and I continue to move forward living the fullest and healthiest life possible.
I am most excited about 2014. I plan on attending several conferences, many to which will be first time conferences for me and I look forward to the information and opportunities.
I am most inspired by the new friends and fellow Lipedema patients I have made this past year.
National Health Blog Post Month Day 19 – Top Three Tuesday
Give three pieces of advice you would give to a caregiver.
1. “Secure your mask before helping others” – Yes, the line from the airplane safety presentation, but it’s true for all aspects in life, especially for caregivers. Remember you need to be at your best in order to help others, that includes being physically and emotionally healthy. I will admit my first time being a caregiver was stressful, the hospital care the first night was not as I would have liked. I could have slept overnight in my friends private room but I knew I would not get as good as rest as I needed, and I the next day when I arrived back to the hospital the morning nursing staff had everything in order, my friend was in good spirits and ready to go home. I was well rested and ready to get him settled at home. Seek out a caregiver support group, and try to have back-up help. I know at my last job there was a Caregiver Support Network.
2. Allow the patient to be as self-sufficient as possible – From my experience as both a patient and as a caregiver, both in short term care situations, the more the patient can do for themselves the healthier they are, and you will be also. (See #1) My mom is a nurse, and I am thankful she was able to stay with me after most of my major surgeries. As she would take care of drains, or bandages, she would explain to me what she was doing and why in case I needed to do it myself. Eventually she had me do it myself, I would joke that she was “a bad nurse” and she’d reply back “I’m making you self sufficient, it’s part of your recovery plan”. Of course not every patient is as able as I was, but encourage even small tasks, no one wants to feel helpless. It’s often difficult to accept help at all. I know as a caregiver I appreciated when the patient did for themselves. My friend had a minor unexpected complication, I joked that my nursing fee had increased. However, in actuality they were a great patient. I would arrive with lunch, and they had already emptied drains and documented information. The only thing I needed to do was change bandages in an unreachable area. I would bring over food that just needed to be heated for dinner.
3. Be an Advocate – But do not be a bother. There is a difference between advocating for someone and hounding hospital staff, especially if it’s not the correct hospital staff. Remember healthcare should be a TEAM endeavor. Patient, nurses, doctors all on the same team with the patients health as the goal. If you want respect as a family member or care giver, and you want the patient to get the best care, communicate with calm respect. I know it can be difficult, as with illness many emotions are involved. However, it is key to getting your end goals met. Yes, sometimes you need to be a squeaky wheel but remember a squeak can be still be respectful. I learned a lot from my mom being an RN. I understand the job the RN has, and the many other patients they have to care for in addition to me or my friend.
Sorry I need a another….
4. Make it Official – If you are the main caregiver in a serious medical situation, be sure the patient has given you the authority to make healthcare decision for them. Medical power of attorney, or healthcare surrogate. Do not ASSUME the patient’s wishes or your wishes will be honored at all times. Hospitals have laws to which they have to abide by, and often multiple family members want to chime in on what is best for the patient. Do not put the staff or your family in middle of a fight at a time when the focus should be on the patient.
What advice do you have for caregivers or patients?
National Health Blog Post Month Day 18 – Three Truths and a Lie
Tell us three things that are true about you, your condition, your Health Activism, or your life. Now tell us a lie. Do you think we will be able to tell the difference?
1. I’ve been told “you are what we read about in medical books.”
2. I once showed up in person to my insurance company’s office to check on the status of an appeal.
3. The sight of needles makes me squeamish.
4. Anytime I get new insurance coverage I request a copy of the Plan Document and I read it thoroughly.
Take guess…which one is the lie?
National Health Blog Post Month Day 10 – Alternative Medicine
Write about alternative treatments and regimens and tell us how you feel about them. What do you support? What is crazy? Have you used any?
Lipedema does not yet have a diagnosis code, let alone a known cause or effective treatment options. Lipedema is an abnormal accumulation of subcutaneous tissue aka FAT. However, lipedema fat cannot be reduced by restricted diet or exercise. Treatment options focus on the inflammation and swelling associated. Some lipedema patients, such as myself, also development lymphedema. Compression therapy has done wonders for my lymphedema, since it pushes the fluid out of my legs, however compression can help maintain lipedema progression the effectiveness is not as successful. There is a promising information for liposuction for the treatment of lipedema, while it doesn’t not address the “cause”, it does relieve the symptom. Currently, the most knowledgeable and experiences surgeons performing liposuction on lipedema patients are in Germany. There are plans for US doctors in New York City to begin performing liposuction for lipedema in 2014. The next challenge will for us to get insurance to cover the treatment, I am currently advocating for passage of legislation to cover compression therapy for lymphedema.
Current treatments lipedema patients use to reduce/manage symptoms:
- Manual Lymph Massage
- Compression Wraps
- Compression Pumps
- Compression Garments
- Compression Sleeves
- Lymphatic Brushing
- Vibration Plates
- RAD Diet
- Detox Bath Soaks
Each of these options deserve a blog post of their own for explanation, I will have to expand on them at a later date.
If you are a Lipedema patient, share with me what options you have tried and if you found any relief.
National Health Blog Post Month – Day 9: Just admit it!
It’s taboo. Write about something that people do but don’t like to talk about or won’t admit to doing.
Nothing stirs up debate within the weight loss surgery community like a discussion about drinking diet soda. Rumors and scare tactics surround the consumption of carbonated beverages from being the cause of regain to causing pouches to explode. Surgeons’ post-op protocols vary on whether or not weight loss surgery patients should consume diet soda. Some surgeons say NEVER, some say whenever as long as the bubbles don’t bother you.
My surgeon’s protocol was the latter, actually my nutritionist’s recommendation was I could try diet soda, and if it didn’t bother my stomach I could have it in moderation. So I did, and I do drink diet soda. The moderation part….um not so much.
My name is Sarah and I’m addicted to Diet Mtn Dew.
There I said it. I admit it. I do not deny I drink diet soda. It is probably my one unhealthy habit. I do not drink alcohol, I do not smoke, let me have my diet soda!
I’m not the only one. Yes, I do know many post-ops who have forever given up their bubbly soda. Kudos to you. You are stronger than I, although I’m sure there is something you enjoy, and enjoy probably a bit more than you should. Don’t we all have something we over indulge in?
Drinking diet soda is so taboo that many post-ops hide their drinking. Which is odd in a community that so opening partakes in drinking alcohol. At an event a few years ago I actually had a fellow post-op question why I was drinking Diet Coke, when I should be well aware of it’s relation to regain. He was drinking bourbon or whiskey on the rocks. Really?
It’s interesting watching fellow post-ops “hide” their diet sodas at events. I’ve seen it poured into cups to hide, or taken in grocery bags to rooms for private consumption. As if there is an “image” to uphold and we must not let others see us being real humans who drink diet soda. When I attend events I drink my diet soda straight from the original bottle or can, and in public. It’s interesting to see others reaction, I was even asked “where I got the contraband?” Seriously, it’s diet soda, not crack. Are we not adults capable of making our own choices?
It could be worse, it could be regular soda. Right? I know, the studies say…………..
But there are so many chemicals. Excuse me but take a look at the ingredient list on your protein shake.
So let’s be real each other, we are humans, we are not perfect…actually I have a confession to make. The other day I mentioned that I took a couple Advil for pain in my legs. I was asked if I ate something with them since NSAIDS are also a supposed “no – no” in the WLS world. I assured the person I take proper precautions, as I also take a daily aspirin for medical reasons.
The truth is yes, I ate something…I washed the Advil down with Diet Mtn Dew and two cookies.
So tell me, do you drink diet soda? Energy drink?
National Health Blog Post Month – Day 6: Say What?
What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?
The most often heard and reason I advocate and share my story of living with lipedema is that the condition does not exist, that’s is merely an excuse for being fat, blaming genes. The most frustrating is when those comments come from medical professionals. Even those professionals that had heard of lipedema, knew of it to be very rare, so rare they doubted I actually had the condition. The assumption is I am a non-compliant patient. Even when keeping food and exercise journals, I would be accused of lying, as my food intake would not account for my lack of weight loss.
A few years ago a doctor on Twitter told me I most likely did not have lipedema and lymphedema, “probably not Sarah. those syndromes are very rare & present in early childhood, often accompanied by other birth defects.” I blogged my frustration. It would be such a relief if I really was just fat, that would mean I could actually control my weight through diet and exercise, but the conditions are real, very real.
As I meet more and more women who have lipedema, and hear their stories of struggle to have medical professionals recognize and diagnosis lipedema I no believe lipedema is a rare disease, I believe it’s merely under diagnosed.
National Health Blog Post Month – Day 5: Election Day!
Votes are in-you won! If you got elected President, what are the 3 changes you would make to healthcare?
- I would create a single payer, government based system of healthcare. The best healthcare coverage I ever had was Medicaid. Seniors love their Medicare. Our health should not be profit based.
- I would increase funding for genetic and stem cell research to improve disease prevention and treatment. Lipedema is a congenital condition for which the gene has yet to be identified.
- I would mandate all adults to have a Living Will, at age 18 require the advisement of rights and assistance in creating a Living Will of end of life wishes. Can be reviewed and changed as needed, complete renewal at retirement age.
I might not be able to enact those healthcare changes but I will continue to advocate for the passage of the Lymphedema Treatment Act and the Treat and Reduce Obesity Act.
National Health Blog Post Month Day 4 – Training Wheels
Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).
My training wheel moment involves health insurance, of course! It was very much like learning to ride a bike, I even had someone there guiding me, holding the bike seat to make sure I didn’t tip over.
When I was initially diagnosed with lymphedema I was on Medicaid. While it took a couple months for my initial treatment and compression pump to be approved, I never encountered a coverage issue or claim denial. I received unlimited physical therapy sessions, and was in the process of being fitted for compression garments when I got my first REAL JOB with REAL INSURANCE. And then came my first coverage issue and the experience that started me on my journey to advocacy.
Due to the size and shape of my legs I needed custom fitted compression garments, as it is important that the compression is correctly distributed over the limb. Jobst, the manufacturer of the garments my doctor and therapist recommended requires vendors and fitters (those who would take the measurements) be trained and certified to be sure the garments are fitted and ordered correctly. The average price for a pair of garments is $300 so it is very important they are made correctly, and since I needed two pair (one to wear, as the other is washed/dry) it was important that insurance helped cover the expense. After all, by wearing compression garments I was saving the insurance company the expense of physical therapy and hospitalization due to cellulitis. I was unable to find a DME (durable medical equipment) provider in my insurance network who was certified to handle my garment order but thankfully the vendor I did find guided me through the process to request network gap coverage.
I wish I could remember the employee’s name at Luna Medical, as I owe her a huge THANK YOU! She very easily could have just told me I would have to pay out of network for my garments. I would have known no different, as do most patients. Instead, she explained that since there was no in-network provider within a 50 mile radius of my home my insurance company had to cover an out-of-network vendor at in-network coverage level. She coached me on what to ask for and what to say when I spoke to my insurance company. To prove there was no vendor in network, I called every DME provider within 50 miles and documented whether they sold compression garments, and if they did I would document who I spoke with and verify they were not a custom Jobst certified vendor. It took several phone calls, and finally the insurance company said they needed to speak with my physician. I happened to have an appointment with her the next day so I asked her if she would call them. Knowing there would probably be hold time with any insurance call, my doctor told her staff to take me into her office to call the insurance and once there was a representative on the phone to get her. To my surprise, after reviewing the information I had already provided the supervisor only asked ME a few questions and then approved my request. She said she didn’t need to speak to my physician at all, she already had her signed prescription stating medical necessity.
The training wheels were OFF…and I never looked back!
I followed the same process with the next 3 insurance companies I had and successfully obtained approval for my compression garments. I transferred those skills into reading coverage documents, researching vendors and providers and overall navigating health insurance. I often help friends and family with their coverage questions. The experience managing my own health insurance coverage led me to a new career. I earned my BS in Health Services Administration and I am currently pursing a Masters of Science in Health Law.
Although I have been successful in obtaining coverage for most of my lymphedema and lipedema treatment needs, there are still obstacles that block patients from getting the care they need and deserve. That is why I share my story to advocate for the passage of the Lymphedema Treatment Act.