What to do as a Patient if your Medical Team Fails you

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When dealing with any type of medical condition especially one as relentless as chronic pain, you should always seek the proper medical attention from professionals. Chronic pain can be unbearable; causing one to lose sleep, become anxious, or simply, lose the ability to do certain things you could do before. Your medical team is supposed to be reliable, supportive and responsive, however, this is not always the case. An important question we wish to address is: what do you do as a patient if your medical team fails you. This could mean a number of different scenarios such as receiving the wrong diagnosis, undergoing the wrong type of treatments, or the doctor feeling that there is nothing else that can be done. Here are some helpful tips to help you overcome these scenarios.

Chronic Pain Relief Through Exercise

One of the key tricks to deal with chronic pain is to try and focus on something else to takeexercise-stretch your mind off the pain. What better way to do this than a little exercise? The muscles are the most common target of lupus. Exercise helps to strengthen muscles, helping prevent re-injury and further pain. Even just taking 20 minutes out of your day for a quick walk can make the biggest difference in your health.

Join a Support Group

No one will ever fully understand the pain that you’re going through except for the people who are experiencing what you are. You are not alone. Support groups can be very beneficial because you can hear first hand experiences and gain some tips from how they cope with their pain. Getting counseling can help you learn to cope better and help you avoid negative thoughts that make pain worse.

Find Ways to Distract yourself from the Pain

When pain gets to be too much, it may hard for you to take your mind off of it. Moist heat soothes muscle and joint pain better than dry heat. Soaking in a hot tub, sauna, or whirlpool, using a moist heated towel, or taking a hot shower can be helpful. Forms of meditations such as focused breathing, low-impact yoga, and Tai Chi can be effective tools for pain management. These methods can help with relieving pain and stress that can make the chronic pain unbearable.

ona_challenges0713_app_427460Seek New Physicians

If you wish to seek new physicians or specialists to consult during your health journey, contact your primary care physician first for any referrals. If you are seeking a rheumatologist in Connecticut, you can reach out to the Lupus Foundation of America, Connecticut Chapter for a recommendation in your area at office@lupusct.org.

 

For more information, click here and here!

Walk to End Lupus Now: Frequently Asked Questions

How do I register for a “Walk to End Lupus Now” Event?1979616_10152749097866044_5563334359171131016_n

You may register yourself or your team online at http://www.lupusct.org or by clicking here to register for our 2016 Walk to End Lupus Now: West Hartford on Sunday, May 15th! Make sure your team name is included on the registration and all team members are registered individually as members of your team.

Is a separate registration form required for each team member?

Yes. There is vital information for our records that the Lupus Foundation of America, Connecticut Chapter needs for liability concerns. Each registration includes a waiver that needs to be signed by each individual participant.

What is the financial commitment for a walk participant?

First and foremost, the “Walk to End Lupus Now” is a fundraising event to support research, programs, and services provided by the Lupus Foundation of America. The Connecticut Chapter of the Lupus Foundation of America does not charge a registration fee or require a minimum pledge amount to participate. However, each Walk participant is individually responsible for collecting and turning in money. Please note that there is a cost to the Lupus Foundation of America for every person who registers to walk. So the foundation actually loses money when someone registers and does not raise money. Encourage your team members to set fundraising goals that they can reach and don’t forget about the awesome incentives you receive by fundraising!

945737_520208884702858_986546935_n.jpgWhat will my team members need to bring the day of the Walk?

They will need to turn in any funds they have collected. Please note that each participant must turn in a separate pledge envelope. Team pledge envelops cannot be accepted.

Will my team members receive any correspondence prior to the Walk?

Yes. All team captains will be directly contacted and given a team captain booklet! If you would like any materials to help fundraise such as posters or postcards, please contact us at office@lupusct.org. All walkers will receive an email of their registration number the week of the walk. This number is important for check-in on the day of the event. It is the team captain’s job to rally their team and make sure they are all ready to fundraise beforehand and participate on the day of!

What time does my team need to be there?

You may find the official walk and registration times on http://www.lupusct.org. With the large numbers of walkers expected, we advise you and your team to get to the site early.

Will there be team photos taken at the Walk?

Yes, a photographer will be available to take team pictures.

When are pledged donations due?

All “Walk to End Lupus Now” donations will be accepted until one month after the event. 10402455_10152049658601044_2893218501512668758_nPledges being mailed in must be postmarked by this date as well. All prizes and awards are based on that closing date. If you have any questions, please give us a call at (860) 269.6240.

Will we walk if it rains?

Yes. We walk even if it rains. In the event of serious weather (tornado, hurricane, etc.) please tune in to your local radio/TV station for announcements relating to the cancellation of the Walk.

Where can I get registration cards and posters?

Contact the Lupus Foundation of America, Connecticut Chapter office to request posters and postcards. They are sent out on a first-come, first-serve basis, while supplies last. Contact us at office@lupusct.org!

Will there be support along the route?

Yes. We provide several rest stops with food and hydration, medical support, and Support and Gear vehicles to pick up weary walkers.

922853_520208278036252_419290891_nWill there be food served at the Walk?

Yes. We provide a light snack prior to the Walk and hydration stops along the route, and lunch is available through food trucks at the walkers’ expense after the walk is completed.

Can a LFA staff member come talk to my team?

Yes. We are always happy to visit with our teams and assist them with fundraising, team building and answer any questions team members may have. If you’d like to set this up, please contact Corrianne Gagliardi at corrianne@lupusct.org!

Where can I get pledge sheets?

We would be happy to send you pledge sheets via email, fax, or mail. Contact us today to get yours!

Lupus and Blood Clots

Did you know March is Blood Clot Awareness month?! Blood clots are considered to be one of many symptoms in some cases of lupus. Not to mention, blood clots are more common in people with lupus. Clots frequently occur in the legs (called Deep Venous Thrombosus or DVT) and lungs (Pulmonary Embolous or PE). Less frequently, blood clots can occur in the brain which is more commonly known as a stroke.

It is thought that blood clots that develop in people with lupus is associated with the Blood cellsproduction of antiphospholipid (APL) antibodies. APL antibodies are abnormal proteins that may increase the tendency of the blood to clot. Fortunately, your blood can be tested for these antibodies.

Lupus patients may also experience changes in blood counts such as anemia (low red cell count). These changes in blood counts are known to cause fatigue, serious infections (low white counts), or easy bruising and bleeding (low platelet count). Many patients do not experience any symptoms from low blood counts, though, so it is crucial that people with lupus get periodic blood testing to detect any changes or problems.

Symptoms of a blood clot include new swelling in your arm or leg (depending on the location of the clot), skin redness, soreness, pain or tightness in your arm or leg (again, depending on the location) or a warm spot on your leg. Blood clots can be dangerous. Clots that form in your legs, arms, and groin can break loose and move to other areas of your body, including your lungs. A blood clot in your lungs is referred to as a pulmonary embolism. If you think you may have a blood clot, its critical that you be treated by a doctor immediately. Emergency room visitation is recommended.

Blood clots can be treated with anticoagulants and strict monitoring. Anticoagulants are blood thinners or a type of medication that prevents your blood from clotting.

Table for Two: Living (and Eating) with Lupus!

Anti-Inflammatory Blueberry Smoothie

Here is another quick and on-the-go breakfast or lunch idea! Smoothies are an easy way to get in plenty of nutrients and this “Anti-Inflammatory Blueberry Smoothie” contains an entire serving of fruits and veggies!!

Blueberries, leafy greens, almond butter, cinnamon, cayenne, and the optional maca powder all offer anti-inflammatory qualities so you will be ready to take on the day.

Servings: 1

Prep time: 5 minutes

Ingredients:

  • 2 handfuls of spinach or kaleBlueberry-Smoothie-SS
  • 1 frozen banana
  • ½ fresh or frozen blueberries
  • 1 tablespoon of almond butter
  • ¼ teaspoon of cinnamon
  • 1/8 to1/4 teaspoon of cayenne (start light and add more if desired
  • 1 teaspoon of maca powder (optional)
  • ½ cup of water
  • ½ cup of unsweetened almond or coconut milk

Directions:

  • Combine all ingredients in a blender until smooth
  • Serve immediately

Table for Two: Living (and Eating) with Lupus!

The Health Benefits of Coconut Milk

Coconut milk and coconut oil are all the rage in the health food world. Coconuts are highly nutritious and high in fiber, vitamins C, E, B1, B3,B5, and B6. Coconuts also contain large amounts of iron, selenium, sodium, calcium, magnesium and phosphorous.

Coconut milk is beneficial for lupus patients because it helps with joint inflammation and arthritis pain. The MCT’s (medium chain triglycerides, fatty acids) found in coconut milk can help lower inflammation, which is associated with painful conditions such as arthritis and general joint or muscle aches and pains. Replacing refined sugar with coconut milk or coconut oil is especially helpful for people with arthritis (or other autoimmune diseases and conditions like lupus) because sugar is a pro-inflammatory and linked to low immunity, worsened pain and swelling.

Coconut milk coffee Creamer Recipe:CWBnEK5WIAAUtb-.jpg

Total Time: two minutes

Servings: four to eight people

Ingredients:

  • 1 can coconut milk
  • 1–2 teaspoons vanilla extract
  • 2 tablespoons coconut oil, melted
  • Raw honey or vanilla stevia to taste
  • Sea salt to taste, optional

 

Directions:

Combine all ingredients together using a blender until well combined, then use as a creamer in your coffee.

*Disclaimer: The Lupus Foundation of America, Connecticut Chapter does not claim that the use of coconuts, coconut oil, or coconut milk will cure or treat lupus. We do, however, believe that coconut oil provides an assortment of health benefits that can be beneficial to lupus patients suffering from inflammation and joint pain. If you are allergic or have a sensitivity to coconuts, coconut oil, or coconut milk, the Lupus Foundation of America, Connecticut Chapter does not recommend using anything listed above as a dietary additive or supplement. Sources of the health benefits of coconut oil are included for further research and reading.

A Faster Track to Lupus Treatments and Cures

@mx_476 (9)Recently, the National Institute of Arthritis and Musculoskeletal Skin Diseases, part of the National Institutes of Health, released a new “Action Plan for Lupus Research” to guide and assist lupus research. The research plan identifies and examines opportunities to increase the scientific understanding and comprehension of lupus, which, presumably, should lead to more effective treatments and ultimately, strategies to discover a cure. Read more about the “Action Plan for Lupus Research” here!

The Action Plan, in addition to the National Public Health Agenda for Lupus, guides the lupus community in its efforts to reduce diagnosis time, develop more services and programs to benefit people with lupus, their caregivers and healthcare providers, and develop new treatments and clinical trial models.

A number of key themes and focus points in lupus research came from recommendations submitted by the Lupus Foundation of America’s Medical-Scientific Advisory Council. Some of these key themes include an emphasis on partnerships in epidemiology, validating lupus biomarkers (genes, proteins and other markers found in the body that are useful in diagnosing lupus), measuring the activity of the disease and effectiveness of it’s treatments, and health disparities.

Click here to watch Dr. Stephen Katz, MD, PhD, the Director of the National Institute of Arthritis and Musculoskeletal Skin Diseases, Kim Cantor, VP of Government Relations and Medical Scientific Advisory Council member, Dr. Karen Costenbader discuss the NIH Action Plan for Lupus Research!

18 Things You’ve Experienced as a Young Person with Lupus

  1. Being the youngest person at the rheumatologist’s office…5857301.gif
  2. Struggling to understand your blood work.kD0IA6M.gif
  3. Telling people you have lupus *gets confused look in return*.Annoyed-Gif
  4. …or telling people you have lupus and listening to another House M.D. reference.tumblr_inline_mteae1xr331r80p9c
  5. Trying to explain lupus…                            tumblr_mtgdovoMWP1sg96flo1_r1_400.gif
  6. Wearing comfortable shoes over fashionable shoes.447095
  7. Side effects of medication.starvinghungry
  8. Having to limit nights out with friends to ensure you get proper rest.lazy-girl-gif
  9. Underplaying how absolutely awful you feel.giphy.gif
  10. Two words: Lupus Fog.gif-i-cant-remember-what-ive-forgotten-hp.gif
  11. Hearing “you’re too young to be sick!”                                     tumblr_mjzd1yvRcK1rfzo6yo1_250.gif
  12. Applying ample amounts of sunscreen at any outdoor outing.tumblr_mmnh22xSPO1rm0nfko1_400
  13. Spring Break? Good one.Stay-Home-and-Blog-Gif
  14. Someone says, “but you don’t LOOK sick.”hitting head
  15. Setting your phone alarms to match your medication schedule.alarm-clock-iphone-list.jpg
  16. Wishing you could go to the beach with your friends in the summer.giphy (1).gif
  17. Or accepting invitations to go out and realizing it wasn’t a great idea.regret-everything
  18. Having a truly amazing support system and knowing who is there for you.tumblr_inline_mjh858D4p11qz4rgp.gif