Everydaylivinglupus

March is National Kidney Month

Lupus is an autoimmune disease where the immune system attacks healthy tissues, including the kidneys. Lupus nephritis is a severe complication of lupus that affects the kidneys, leading to inflammation and potential damage.

When my lupus symptoms were full blown, my feet and legs were so swollen I couldn't fit into any of my shoes. Protein was also leaking in my urine. Which lead me to see a nephrologist. I had a kidney biopsy scheduled and was lucky that I was Class II with lupus nephritis. Over the years, I've had to take planquil, cellcept, losartan, imuran and prednisone to keep my symptoms quiet.

**kcancer

March Mental Health Check-in...

I don't know why but February felt like it zoomed by. March thankfully is relatively quiet. No doctors appointments this month but I do have to do some blood work at Quest. This month also marks my one year anniversary of finding out about my sjogrens and non-hodgkins lymphoma. Its been a crazy year and I can't believe how far I've come.

So many things to brings awareness to this month :
Automimmune Awareness Month
National Kidney Month
National Women's History Month

Also looking forward to celebrating my dad's 60th birthday! ❤️

Please drop a comment below and let me know how you feel. Any exciting plans? My inbox is always open if you wanna talk!

February 29 is RARE Disease Day 🦓

Here are some interesting facts about rare diseases:

Definition: A rare disease, also referred to as an orphan disease, typically affects a small percentage of the population. In the United States, a disease is considered rare if it affects fewer than 200,000 people.

Prevalence: Despite each rare disease affecting a small number of people, collectively they impact millions worldwide. It's estimated that there are over 7,000 rare diseases.

Challenges: Due to their rarity, diagnosis and treatment for rare diseases can be particularly challenging. Many patients face delays in diagnosis or misdiagnosis.

Research: Research into rare diseases is critical, but it can be difficult to secure funding and resources due to the small patient populations.

Genetic Basis: A significant portion of rare diseases have a genetic basis, meaning they are caused by mutations in genes. This contributes to their complexity and variability in symptoms.

Symptoms: Symptoms of rare diseases can vary widely, even among individuals with the same condition. This can make diagnosis even more difficult.

Support: Support groups and patient advocacy organizations play a crucial role in raising awareness, providing resources, and supporting individuals and families affected by rare diseases.

Orphan Drugs: Due to the limited market potential, developing treatments for rare diseases can be financially challenging for pharmaceutical companies. Governments often provide incentives for the development of orphan drugs to address this issue.

There are international efforts to address the challenges of rare diseases, including collaborations between researchers, healthcare professionals, and patient advocacy groups.

Advances in genetics, technology, and medical research offer hope for improved diagnosis, treatment, and support for individuals with rare diseases in the future.

7 Tips For Those Newly Diagnosed With A Chronic Illness

Being newly diagnosed with any diagnosis can be a life-altering experience, but with the right approach, individuals can effectively manage their condition and lead fulfilling lives. Educate yourself, build a strong support system, communicate openly with your healthcare team, adopt a healthy lifestyle, and become an advocate for your well-being. Remember that each person's experience is unique, and a personalized, comprehensive approach is key to successfully navigating this new chapter.

Happy Valentine's Day Warriors! ❤️

What else is on you wishlist for Valentine's Day? Drop a comment and let me know.

**kcancer

February is Heart Health Month ❤️

Lupus, can affect the heart in several ways. It can cause inflammation of the heart muscle (myocarditis), the outer lining of the heart (pericarditis), and the inner lining of the heart chambers and valves (endocarditis). These conditions can lead to symptoms such as chest pain, shortness of breath, palpitations, and in severe cases, heart failure or rhythm disturbances. Additionally, lupus can increase the risk of developing atherosclerosis, a condition where plaque builds up in the arteries, leading to coronary artery disease and an increased risk of heart attacks. Regular monitoring and management of lupus by healthcare professionals are essential to minimize the risk of heart complications

**kcancer

Congrats to Taylor's boyfriend and the Kansas City Chiefs 🏈

Final thoughts :
I had no idea what was going on
Halftime show was super nostalgic
I was only there for Usher and Taylor 🤪

Did you watch the super bowl? Did your team win?

Of course, I had to put a chronic illness spins to these pics. Which one of these can you relate to?

**kcancer

New article published on lupus.net

Getting a new diagnosis is hard. But getting the big C just punches you in the gut.

I discuss how lupus and non-hodgkins lymphoma is related, how I got my diagnosis and how I'm coping with my new normal.

**kcancer

February Mental Health Check-in...

January felt like the longest month ever. So I'm glad its finally February. This month is relatively quiet for me. Only 1 followup appointment with my rheumatologist scheduled. So Im super thankful for that.

Also looking forward to Valentine's Day ❤️

Please drop a comment below and let me know how you feel. Any exciting plans? My inbox is always open if you wanna talk!

Empower Your Health Journey! 💪 Seeking a second opinion is a game-changer for chronic illness warriors. 🩺✨ It offers fresh insights, validates your treatment plan, and ensures you're making the best choices for your well-being. 🌈💙 Don't hesitate to explore different perspectives – your health deserves it!

Did you know that January is 🩸

Many of us live with multiple chronic illness and may not be eligible to donate, but its important to raise awareness to others who may be eligible to. Donating blood is safe, quick and can help save multiple lives. Donor awareness is key to maintaining a healthy and sufficient blood supply.

Please encourage your family and friends and reshare this post. Together we can make a huge difference!

Before donating blood, it's advisable to:

❤️Eat a healthy meal: Have a nutritious meal a few hours before donation to maintain blood sugar levels.
❤️Hydrate: Drink plenty of water before and after donation to stay well-hydrated.
❤️Get a good night's sleep: Ensure you're well-rested the night before donation.
❤️Bring identification: Carry a form of identification, such as a driver's license.
❤️Wear comfortable clothing: Choose a shirt with sleeves that can be easily rolled up.
❤️Avoid certain medications: Inform the staff about any medications you're taking, as some may affect eligibility.
❤️Postpone if unwell: If you're feeling unwell on the donation day, it's best to reschedule.

Health Update... Haven't done one of these in awhile...

Last Wednesday I did my 6 month whole body scan and saw my oncologist yesterday to discuss results and next steps. Tumor is still there but stable. It didnt grow any bigger which is a good thing. Blood work was also good. I am also not experiencing any new symptoms which is a plus. So we will continue with the wait and watch approach. I'm going to do another scan in 4 months and will see from there if I'll do another rituxan infusion.

Next month I'll see my rheumatologist and will repeat more labs. Hoping it continues to stay quiet! 🙏🙏

Hope you all are having a great day!!

**kcancer **kcancer

... Here is the final photo dump from my time at Tokyo. How I wish I could go back again some day 🙏🙏

Highlights :
Odaiba City
Sanrio Cafe
Tokyo Tower
Tokyo Skytree
Shubuya Sky
Harajuku
Hotel Gracery

If you're interested I also saved a highlight reel from my trip. If you're planning on going to Japan and need any tips send me a DM.

Did you know that January is 🩸

Here are some facts about the importance of blood donations.

Many of us live with multiple chronic illness and may not be eligible to donate, but its important to raise awareness to others who may be eligible to. Donating blood is safe, quick and can help save multiple lives. Donor awareness is key to maintaining a healthy and sufficient blood supply.

Please encourage your family and friends and reshare this post. Together we can make a huge difference!

Another ... Here is a photo dump from my time at disney in Tokyo. You all know I'm a big disney fan so I had to come here and cross this place off my bucket list. Highly reccomend coming here. Everything is better in Japan and much cheaper! Next week I'll have a photo dump of the rest of my time in Tokyo. If you're interested I also saved a highlight reel from my trip.

If you're planning on going to Japan and need any tips send me a message.

January Mental Health Check-in...

I'm kinda anxious for this month. I have my 6 month follow up scan and appointment with my oncologist. Praying all goes well. 🙏🙏

But my husband's bday is this week so I can't wait to celebrate with him.

I am wishing you all a happy and gentle start to the new year!!!

Please drop a comment below and let me know how you feel. My inbox is always open if you wanna talk!

Thank you so much for the goodies

Another ... Here is a photo dump from my time in Kyoto. Next week I'll have a photo dump of my time in Tokyo. If you're interested I also saved a highlight reel from my trip.

Highly reccomend renting kimonos at least once if you ever visit Japan. Def a highlight from our trip.

If you're planning on going to Japan and need any tips send me a message.

Managing holiday burnout with a chronic illness requires careful planning and self-care:

💜Prioritize Self-Care: Ensure you get enough rest, maintain medication routines, and listen to your body. Don't hesitate to take breaks when needed.
🎄Set Realistic Expectations: Scale back on holiday commitments and focus on what truly matters. Communicate openly with friends and family about your limitations.
🥄Plan Rest Periods: Schedule downtime between events to recharge. It's okay to decline invitations or leave early if necessary.
🎅Delegate Tasks: Don't hesitate to ask for help with holiday preparations. Delegating tasks can ease your workload and reduce stress.
🎉Choose Quality Over Quantity: Focus on a few meaningful activities instead of trying to participate in everything. Quality time with loved ones is more important than a hectic schedule.
🎁Communicate Boundaries: Let others know about your limitations and be clear about what you can and cannot handle. Open communication helps manage expectations.
🍬Embrace Virtual Celebrations: Consider celebrating with loved ones virtually to reduce physical demands while still enjoying the holiday spirit.
🧘‍♀️Practice Mindfulness: Incorporate mindfulness techniques to manage stress. Breathing exercises and meditation can be helpful in staying present and calm.
🆘️Plan for Emergencies: Be prepared for unexpected health challenges. Have necessary medications, medical information, and support contacts readily available.
🪞Reflect and Adjust: Assess your energy levels regularly and adjust plans accordingly. It's okay to modify or cancel plans if needed.

Merry Christmas Eve 🎄💜

Sending my love to all this holiday season!
Wishing you all a wonderful holiday!

**kcancer

Dealing with a chronic illness during the holidays can be tough. Here are some reminders to keep in mind.

What are your reminders for the holiday season?

Merry Christmas Eve Eve!

Mentally I'm still in Osaka... Here is a photo dump from my time there. I'll be uploading more pics in the upcoming weeks to showcase my travel in Kyoto and Tokyo. If you're interested I also saved a highlight reel from my trip.

If you're planning on going to Japan and need any tips send me a message.

New article published on lupus.net

Dealing with lupus, sjogrens and non-hodgkins lymphoma during the holidays just hit differently.

I discuss how dealing with a chronic illness affects this time of the year.

How has chronic illness affected your life during the holidays?

Chronic Illness Holiday Wishlist

Here are some wishlist items from our spoonie community. Thank you to all who answered and helped create this post!

Swipe to see what's on our holiday wishlist.

What else is on your holiday wishlist?

**kcancer

7 Tips For Navigating The Holiday Season With Lupus

The holiday season, with its festive spirit and gatherings, brings joy to many. However, for individuals battling lupus, the festivities can pose unique challenges. Lupus warriors must prioritize self-care to ensure a healthy and enjoyable holiday season. This essay explores essential strategies for lupus warriors to protect themselves during this time.

Swipe to see some tips to help you this holiday season!

What other tips do you have?

**kcancer

Yummy

OMG! I cannot believe it's finally December! This monthly check in is a bit late since I was on vacation. Im still exhausted and prob will need another vacation from this vacation. Lol. But Japan was just so awesome!! I have so much pics to share!

While traveling, I did flare up and the lump on my face is back. Its fluctuating in size but not painful. Doctors still say to continue monitoring. Very annoying.

Appointment wise, I just have an appt with my kidney doctor tmw and that's it till 2024! Which I'm so happy about.

Will be taking this week to rest up and catch up on work. This morning I had over 200 emails to go through.

How are you all feeling?? Drop a comment or message me if you would like to talk.

**kcancer

Sending my love to all this holiday season!

I am beyond thankful for this community and am so glad for social media for being able to connect with you all.

*Since I'm in Japan this is one of many scheduled post. Hopefully I set this up correctly. Lol. Will be on IG from time to time, so responses to messages to comments and DMs will be delayed.

**kcancer

Holidays are fast approaching. Please keep in mind convos that should be avoided unless its brought up by the individual.

It's generally best to avoid discussing sensitive medical details, treatment plans, or prognosis during holiday parties. Focus on positive and uplifting topics, such as shared memories, interests, or plans for the future. Steer clear of anything that could make the family member uncomfortable or overshadow the festive atmosphere.

What other topics should be avoided?

**kcancer