Lupus and the Holidays

The holidays can be a stressful time for many people but especially for those living with a chronic illness like lupus.  I find the holidays to be one of the most stressful times for me personally and also a time when my lupus flares become more active.

Dealing with holiday events, cooking, decorating, and planning a holiday with kids always seems to stress me out but even more so since I was diagnosed with lupus a few years ago.  Last year, I dealt with a horrible trigeminal neuralgia flare at the holidays and was weeks out from my kidney cancer surgery.  Needless to say, I didn’t get a lot of decorating done and just didn’t feel good for most of the holiday season.

Lupus and the Holidays

lupus and the holidays
lupus and the holidays

Since being diagnosed with lupus in 2016, I quickly learned that one of my biggest flare triggers was stress.  I also suffer from bad anxiety these days so the stress and anxiety usually work together to create an unfavorable lupus flare for me.  It is extremely important to recognize flare triggers so that you can take measures to help reduce your exposure to those specific triggers.  Stress is no different.

The holidays are supposed to be a happy time where you are living your life carefree and with a happy heart.  I love the holidays, especially Christmas.  There is something so magical about sparkling lights and glittery snow falling on cold winter nights.  Of course, I prefer to spend my time admiring this beauty from the comfort and warmth of my home LOL.  But I am telling you, the holidays are soothing to my soul.

Yet, every recent holiday has sent me into a flare.  If you deal with a chronic illness, you may relate to this.  The stress of the holidays seem to trigger my lupus to flare often.  If we are being honest, there are probably many reasons this happens to me personally.  I know that I do not sleep as well or as much as I should when stressed and everything I feel I have to do for the holidays.

lupus and the holidays

It also seems to be the time of the year that I always catch a virus of some sort.  Being sick is another flare trigger for me and it seems those flares are the hardest to recover from.  When my flares are triggered by a sickness, I not only have to recover from the sickness (and that takes me a lot longer these days!), but I also have to then deal with flares that go on for weeks and sometimes months.

As a lupus warrior, I have realized how important it is to prioritize your time and the activities you agree to participate in.  This becomes a lot easier when you begin to take steps to organize your life.  I may be a medical hot mess, but I’m kind of a hot mess in general LOL.  I had to implement ways to really gain some order in my life now that I have multiple health issues.

 

  • Learn to say NO

One of the most important pieces of advice I can give a fellow lupus warrior is to learn to say no.  This is still something I find myself struggling with some days.  I completely get what its like to not be able to tell those you love and respect that you just can’t help them with what they need or attend an event they are having.  I feel as a chronic illness warrior that I try to ‘prove’ myself a lot of the times in dealing with my capabilities.

I am stubborn in that sense, but the truth is, we can’t do everything.  No one can.  Its not necessarily just a chronic illness warrior thing either, I mean…. we are only human.  Sometimes, we HAVE to say no and take time for ourselves.

If you find yourself saying ‘YES’ to everything, especially things you really have no interest in, you may want to re-evaluate for a moment.  Ask yourself if this task or event is going to benefit your life or well-being in someway.

If it is not mandatory, ask yourself is it something you would have seeked out yourself, had they not asked you?  How are you feeling physically and mentally right now?  What does your current task list look like?  These are all important things to consider when someone asks you to do something or attend an event.

The holidays can get overwhelming with work, school, doctor appointments, scans, labs, etc.  This is the best time of the year to really learn to say no when needed.

Using phrases like:

  • “I am sorry, I am already booked for that day or week.”
  • “I would love to and appreciate the offer, but I am going to have to pass at this time.”
  • “Thanks for considering me but I have been dealing with a lot of health issues lately and am not able to commit to this at this time.”
  • A simple “NO”  will also suffice.  You really don’t owe anyone an explanation to anyone unless you feel it is warranted.

 

  • Set reminders on your cell phone calendar

One of my favorite tips is to start using the calendar on your cell phone.  Almost every phone has a built in calendar, but I personally prefer to sync it with my Google calendar.  With the kids attending remote school right now, I get a lot of notifications and assignment emails that are really important for me.  I feel this makes it a lot easier to keep things on one calendar.   This is also helpful because I can still access my Google calendar from a device other than my phone if it were needed.

I also find it really helpful to set up reminders when I add an event to my phone calendar.  I set up an email reminder for the day before the event and a phone notification reminder a few hours before the event.  This ensures that I get a double notice of the event and not forget about it.

With so many things going on during the holidays, having a calendar with set notifications makes life A LOT easier for me as a lupus warrior.  Brain fog is a legit issue for me and having all of my events in one place makes it less likely for me to forget about something.

  • Get a large calendar

I also find it incredibly helpful to have a large wall calendar that coincides with your cell phone calendar.  I recommend placing this large calendar in a room that you spend a lot of time in.  That way each day you are able to get a visual of the tasks at hand for the week.  I find the large calendar really helpful for the rest of my family as well, maybe more so for them than me LOL.

I can tell them about all the plans or due dates we have for something, but they will usually forget as well.  Having a large calendar makes it a lot easier for them to understand the plans for the week as well and help remind you of events when they may slip your mind.

  • Organize your mail

My least favorite part of life these days involves the mail LOL.  There is nothing worse than feeling overwhelmed with utility bills or medical bills, especially around the holidays.  If you find yourself hating to even check the mail, you may want to consider organizing it.

Why should you spend time organizing your mail when you don’t even want to think about all the due dates piling up?  Let’s just say that things don’t seem as scary when you take the time to organize them.  Financial issues are something that many of us chronic illness warriors deal with.  When you just ignore things, they only pile up and get worse.  Not to mention, many places will tack on late fees the longer you wait to deal with a bill.

Start by organizing all of your bills according to their due dates.  Once they have been separated, then group them into piles by your closest pay period.  This can help you figure out what bills should be paid with what paycheck during the month.  This can help you pay your bills on time and save yourself some money and stress.

I also like to write all of my bills on my large calendar.  This also helps with a visual que as to when those payments need to be paid.  If you do this each day you get a bill, it will feel so much less overwhelming!  It can also help you manage a better budget when dealing with an illness like lupus and the holidays.

  • Organize your medications

If you have not already organized your medications, you probably should consider doing this as soon as possible.  I am not sure if you are like me and have ever wondered if you already took your medicine…or are you thinking about last night????  Medication brain fog has happened to me more times than I care to admit.  Then I get scared thinking I may take too much if I already took it or I will suffer if I actually didn’t take it.

Getting a pill organizer off of Amazon is probably the easiest and most affordable ways to organize your medications.  Having your medication separated by days makes it a lot easier to tell if you took your medicine or not.  It also can save you a lot of time on hectic mornings or busy days.

  • Meal Prep Weekly or Bi-Weekly

One of my biggest resolutions for the New Year is to get better about meal prepping.  I love to meal prep but find myself falling off the bandwagon a lot.  Yet, I know how much easier life is as a lupus warrior when I do meal prepping.  If you have never heard of meal prepping,  Meal prepping is preparing meals on a certain day, then portioning it out to create grab-and-go meals for later.

Most of the time, I prepare meals for the coming week when I meal prep.  This helps me by having meals on hand and easily accessible in the fridge.  Recently, I came across freezer meal preppers.  This is where you can make large foil pans of different meals and freeze them.  I am excited to start planning some freezer meals in addition to my normal meal prep ideas.

Not only is meal prepping a great idea year-round, but its an amazing idea for dealing with lupus and the holidays as well.  If you are in charge of creating a holiday feast, you may want to check out some holiday meal prep ideas that can help you save time and energy this season.  Who says you have to prepare everything the day of?  Break up your cooking and baking tasks into different days and utilize the help of meal prepping.

  • Track you lupus symptoms

I am a big advocate for tracking your symptoms when you are a lupus warrior.  Tracking your lupus symptoms can help you identify triggers and also help you keep track of symptoms you are experiencing.  During the holidays, you may experience many flare triggers.

Keeping a record of these triggers can help you identify them and hopefully prevent them if possible.  Tracking flares can also make discussions with your doctor a lot easier and more in-depth.  Using a lupus journal or lupus symptom tracker may be beneficial for you if you experience flares during the holidays like I do.

  • Apply for a lupus HealthWell Foundation Grant

The holidays can be tough on lupus warriors who struggle with finding medical assistance.  If you are in need of lupus financial help, you may want to consider checking out the lupus HealthWell Foundation grant.  Every December, they open the grant to applications for the lupus fund.  For many years, they offered a medication co-pay assistance program to help lupus patients cover many medications.

As of 2020, they have also opened a grant to help pay for insurance premiums for lupus warriors.  The great thing about this grant is the fact the income guidelines are A LOT higher than most programs available.  You may be surprised to find out you may be eligible for this grant.  It is definitely worth checking into if you are a lupus patient needing some financial help for the new year.

 

While the holidays are a beautiful and magical time of the year, they can sometimes be difficult for lupus warriors.  If you can identify triggers for your lupus flares, you may be able to help manage your symptoms better.  Being proactive during the holiday season can help when dealing with a chronic illness.  Learning to say no, organizing your life, and getting financial help are all ways you can stay ahead of lupus and the holidays.

Most importantly, take a rest day if needed.  Self-care is extremely important as a lupus warrior and we all need a break at some point. I hope some of these tips help you to have the best holiday season.  I hope you and your family have a wonderful holiday season and stay safe and healthy!




BloqUV Sun Protective Clothing- Lupus Lyfe Review

If you have been following my blog for a while, you probably have noticed that I am a huge advocate for sun protective clothing.  One may even use the word OBSESSED to describe how much I love and advocate for sun protection clothing.  As a lupus warrior, it is extremely important for us to utilize any protection from the sun that we can.  I am honored to have had the chance to review BloqUV sun protective clothing recently.

I was really excited to review this specific brand because I had not tried any of their UPF clothes yet.  When I received my package, I could not wait to see what I would be reviewing. Lupus and sun protective clothing are extremely important topics to discuss when you suffer from photosensitivity.

You can check out my excitement in my BloqUV Unboxing video I created below!

 

 

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A post shared by Britt @ Lupus Lyfe (@lupuslyfe)

What is UPF Sun Protective Clothing?

So…what exactly is UPF sun protective clothing? Ultraviolet Protection Factor (UPF) indicates how much UV radiation (both UVB and UVA) a fabric allows to reach your skin.  A UPF 50 fabric blocks 98 percent of the sun’s rays and is extremely helpful in reducing exposure to UV rays from the sun and other artificial light sources.

From The Skin Care Foundation: A fabric must have a UPF of 30 to qualify for The Skin Cancer Foundation’s Seal of Recommendation. A UPF of 30 to 49 offers very good protection, while UPF 50+ rates as excellent.

Why is Sun Protection Important for Lupus?

According to the Lupus Foundation of America, up to 70% of lupus patients could find themselves sensitive to the UV rays from the sun and other artificial lighting.

Some lupus warriors, like myself, find themselves developing rashes and sores after being exposed to UV rays without any protection.  Sometimes, even using a broad spectrum sunscreen alone is not enough. That is why sun protective clothing can help offer a second layer of protection for people who experience photosensitivity.

Exposure to the sun can cause other symptoms to flare in a lupus patient.  These can include joint pain & fatigue after being exposed. Being a lupus patient, sun protection is extremely important, so providing an honest and detailed review of each BloqUV item played a major role in my review.

 

bloquv sun protective clothing review lupus lyfe

Other Reasons People with Lupus Should Wear UPF Clothing

While lupus itself can cause photosensitivity issues, some of the medications we may take can also play a role in an increased sensitivity to UV rays.  Hydroxychloriquine, which many lupus patients take, is well known to increase sun sensitivity in some of those who take it.  NSAIDs like Naproxen and Ibuprofen can also cause issues with the sun in some who take these medications.  While methotrexate is not a sun sensitizing drug, it can cause a certain type of sun reaction called radiation recall.  This reaction can cause old areas of sunburn to react again once taking methotrexate.

Another reason sun protection is extremely important in people with lupus is because studies have shown that people with lupus may be at an increased risk for cancers, including skin cancer like Basal Cell Carcinoma and Squamous Cell Carcinoma.  Certain medications that are used to suppress the immune systems of those with lupus have also been shown to have a link with the risk of skin cancer.  For example, those who take Cellcept may also have a higher risk for skin cancer.

When you realize how many different ways the sun can affect lupus warriors, it really is simple to understand how important it is to start stocking your closet with clothing that can help protect you.

bloquv sun protective clothing review lupus lyfe (1)

What is BloqUV Sun Protective Clothing?

These days,  you can find a variety of UPF styles and designs and BloqUV is no different.  BloqUV is a sun protective clothing company located in Miami, Florida.  They are leaders in UPF clothing and are advocates for sun protection.

Living in Florida, it’s easy to see how the founder of BloqUV, Corina Biton, realized the dire need for sun protective clothing. After a dermatologist scare, Corina created BloqUV with BloqTek, a proprietary fabric with minimum Ultraviolet Protection Factor 50 that blocks 98% UVA/UVB rays.

The protection is chemical-free, inherent to the fabric and unaffected by laundering.  Unlike sun protection from a broad spectrum sunscreen, you never have to reapply Bloq UV sun protective clothing!

BloqUV Full Zip Top Review: Style 3010

bloquv sun protective clothing review lupus lyfe (1)

The first article of clothing I tried on was the BloqUV full zip-top in purple.  First, I want to mention how beautiful and gorgeous this color of purple is.  It’s a rich hue and is very vibrant in person. It is the perfect addition to my lupus awareness wardrobe.  This specific zip top is style number 3010 on their website.

When it comes to the UPF protection of the full zip-top, it has an amazing UPF 50+.  This means it offers 98% protection from the sun.  Paired with a high SPF broad-spectrum sunscreen, I felt a lot more comfortable being out in the bright sun.

bloquv review

When I first pulled this UPF zip-top out of the package, I was quickly amazed at the coolness of the material.  If you have tried any UPF tops in the past, you may have noticed some of them are a little hard to keep cool in while out in the sun.  This full-zip top stayed just as cool when I wore it.  I even did some walking and light stretching at the park and never felt overheated.  If you take prednisone as I do, you will really appreciate this cooling factor!

Another neat detail is that the zipper has a rubber covering, so you never have to worry about a metal zipper getting hot in the sun.

bloquv review
No bare metal zipper to get hot in the sun!

Something else that really made a difference for me in this UPF shirt compared to others I have tried is that the cut is a lot longer than most.  If you are like me and wear a cami under everything, this may be a great option.  I was still comfortable enough to wear a cami under it, but I honestly feel like it was long enough without one.  The cool thing about this particular style is that it is a full zip-top and you can choose to wear it open with a cami or light tee underneath.

I also love, love, love [did I say love????] the fact that it has thumb holes to help keep the sleeves covering your hands!  This was something that I did not notice in my original unboxing, but was extremely happy to see when I put it on!  You may not realize how much sun exposure your hands can get, especially when driving in the car!  Not to mention, they just look cool LOL.

upf clothing lupus

I also appreciate the stretchiness of the material.  Again, as someone who takes steroids often, my weight can increase or decrease by about 10lbs often.  I prefer wearing materials that allow for that weight loss and weight gain that I know so many others are also dealing with.  I feel like this shirt was the perfect choice for that issue.

I am wearing an XL in the zip-top for size references.  If you are unsure of sizing after checking out their website, I would consider ordering a size up just to be safe.

With that said, the shirt didn’t lose its shape at all and the quality of the material is very nice.  It is a smooth and lightweight material that seems magical considering its strength in sun protection.

Overall, I am completely ecstatic to have tried BloqUV’s full zip-top.  I really will emphasize the points of staying cool, the longer cut of the shirt, and the thumb holes.  If you are looking to make your first (or 10th!) purchase of a UPF sun protective shirt, I highly recommend this particular one from BloqUV.

 

BloqUV Leggings Review: Style 6007

bloquv sun protective clothing review lupus lyfe

I was fortunate enough to be able to review not only BloqUV’s full zip-top, but also their UPF leggings!  Yes, you heard me right!  I am an AVID legging wearer and can honestly say that most of my wardrobe consists of leggings.  Having lupus, it is extremely important for me to consider comfort when reviewing clothes.  The ultimate comfort to me has been leggings for many years.

If you are obsessed with leggings like me, you should definitely consider trying out BloqUV’s UPF leggings.  These leggings are seriously amazing.  Not only are they incredibly comfortable, but they also provide stretch with some compression as well.  They are a higher rise legging (I am about 5’3 for reference and these are a Large) and I never had to worry about them slipping down.  I felt as though everything was contained LOL.

bloquv sun protective clothing review lupus lyfe

They are a lot thicker than what most leggings I own are, but they were not hot or bulky by any means.  The quality is exceptional for leggings and I believe they would make a great choice for any outdoor activity you can dream of….or just hanging out at home too.

It’s almost hard to believe that something so chic and comfortable could provide sun protection, but these leggings offer UPF 50+ as well.  I really feel like BloqUV outdid themselves with the leggings because they are also really nice quality.

bloquv review

One of my favorite surprises was the fact they had pockets!  Yes, they have pockets on the side leg area and a small pocket in the waistband.  I am a lover of all things with pockets so I do not lose things like my keys LOL [hello brain fog].

bloquv sun protective clothing review lupus lyfe

There is nothing like knowing you are protected and comfortable from top to bottom as a lupus warrior.  After having the chance to review the full zip-top and the leggings from BloqUV, I can honestly highly recommend them as your choice for lupus sun protection.

If you have been waiting to give sun-protective clothing a try, now is the perfect time to test them out for yourself!  I am pleased to have partnered with BloqUV to offer a special discount code to my readers.

Use code: LupusLyfe20 to receive a 20% discount off of your order with BloqUV!

 

 




BloqUV Sun Protective Clothing Unboxing

🦋Hey warriors! If you have been following my blog, you know how serious I take sun protection these days. You also probably know that I love doing reviews lol. 🦋

💜I received a special package from @bloquv and I am so excited to share my unboxing video with you all!💜

☀️I will be reviewing these products soon and sharing my review on my blog & on my social media accounts so make sure to stay tuned☀️

📍Bloq UV is also offering 20% off to my followers if you use my code: LupusLyfe20 📍

🌈 Check out their UPF products here: 🌈 www.bloquv.com

 




Is it Fibromyalgia or Lupus?

Fibromyalgia and lupus are both chronic and painful diseases that mainly affect women.  Many people question whether they have lupus or fibromyalgia.  Some patients find after years of searching for answers, they are diagnosed with both fibromyalgia and lupus.  

It is important to understand the differences between these two illnesses due to variation in treatments and prevention of inflammatory damages that could be caused from lupus.

What is Fibromyalgia?

According to the American College of Rheumatology, fibromyalgia is a common neurologic health problem that causes widespread pain and tenderness.  Fibromyalgia is not an autoimmune disease or one that arises from an inflammatory process like lupus. 

Fibromyalgia is believed to cause chronic and widespread musculoskeletal pain throughout the body because of issues within the pain processing systems of the brain.  There is currently no cure for fibromyalgia.  While fibromyalgia is a painful and lifelong illness, it is not deadly.

Fibromyalgia Symptoms:

fibromyalgia symptoms or lupus
fibromyalgia symptoms

People with fibromyalgia commonly present with some or many of the following symptoms:

  • Widespread muscle pain
  • Tender Points on the body
  • Fatigue
  • Skin Sensitivity
  • Brain Fog
  • Trouble Sleeping

What is Lupus?

Lupus is a chronic autoimmune disease that causes the immune system to attack healthy cells and tissue and it can cause damage to many parts of the body.  This systemic inflammation can cause minor to severe damage to a person’s vital organs.  

Lupus often affects the skin and joints in many patients and can progress to damaging kidneys, tissues in the heart and lungs, and even the brain.  Damage to vital organs can lead to death in some lupus patients.

Lupus Symptoms:

fibromyalgia symptoms or lupus symptoms
lupus symptoms

Many people with lupus present with some or many of the following symptoms:

  • Joint Pain
  • Skin Rashes
  • Sun Sensitivity
  • Fatigue
  • Brain Fog
  • Hair Loss
  • Blood and/or Protein in the urine
  • Mouth/Nasal Sores
  • Muscle Pain
  • Positive ANA and/or Anti-DSdna

Similarities in Lupus and Fibromyalgia:

Fibromyalgia and lupus have both been proven to be more prevalent among women.  The American Chronic Pain Association states that approximately 90% of people suffering from fibromyalgia are women.  The same can be shown for those affected by lupus.  The Lupus Foundation of America provides data showing that 9 out of 10 patients diagnosed with lupus are women.

Both lupus and fibromyalgia are considered “invisible illnesses”.  This is due to the fact that many of their symptoms can not be physically seen by others, including doctors. This makes diagnosis difficult in both lupus and fibromyalgia.  

This has led to an average 6 year wait for an official lupus diagnosis and according to the American Chronic Pain Association, it can take around 5 years for a proper fibromyalgia diagnosis.

Both of these illnesses can cause significant pain in patients. Both fibromyalgia and lupus can present in flares.  This means they can flare up and then patients can experience moments of remission where the diseases are not active.

While they share overwhelming similarities in patient demographics and long term waits for diagnosis, there are many clinical aspects of similarities among symptoms between the two as well.  In fact, the similarities in symptoms can often cause patients to be misdiagnosed or under-diagnosed.  

There are symptoms that are common among those with both lupus and fibromyalgia, these include:

  • Fatigue
  • Brain Fog
  • Muscle Pain
  • Headaches
  • Raynaud’s Syndrome
  • Morning Joint and Muscle Stiffness
  • Positive ANA

The Dangers of Misdiagnosing Lupus as Fibromyalgia

Due to the possibility of inflammatory damage to organs and tissues, it is vital for lupus patients to receive a correct diagnosis quickly.  Unfortunately, this is not the case for most patients who are diagnosed with lupus.  

In fact, Lupus UK conducted a survey and discovered that many patients spent over 7 years waiting for a correct lupus diagnosis.  Many people may find themselves being diagnosed with only fibromyalgia during this time.

This is incredibly frustrating and dangerous for lupus patients because the treatment of lupus and the treatment for fibromyalgia varies greatly.  When one thinks about the timeframe of 7 years for a correct diagnosis, it is important to remember that the patient was essentially untreated for those years and was subject to potentially dangerous consequences from uncontrolled organ and tissue damage.

This is precisely why it is extremely dangerous for lupus patients to be misdiagnosed or underdiagnosed.  This poses an issue for many doctors as well.  Paying attention to symptoms, ruling out other diseases, along with constant monitoring of blood work for their rheumatic patients should be of utmost importance.  

Diagnosing Lupus:

Lupus is diagnosed through a set of 11 criteria that was established by The American College of Rheumatology. Unfortunately, there is not one single test that can diagnose lupus and that makes a correct diagnosis challenging for doctors.  

The ACR requires at least 4 of the 11 criteria to be present in a patient before a lupus diagnosis can be made.  The ACR criteria has proven to be around 90% effective and new criteria are currently being updated.  

The current ACR criteria include:

  • Presence of a malar rash 
  • Presence of a Discoid rash
  • Photosensitivity 
  • Oral or Nasal Ulcers
  • Nonerosive arthritis of multiple joints 
  • Serositis
  • Kidney disorder
  • Neurological disorders 
  • Blood disorders 
  • Immunologic disorder (anti-DNA, anti-Sm or positive antiphospholipid antibodies)
  • Positive antinuclear antibody (ANA) test

Diagnosing Fibromyalgia:

Much like lupus, diagnosing fibromyalgia can be challenging.   Currently, there are no lab tests that can be used in diagnosing fibromyalgia.  Doctors will perform physical exams and go over patient history when considering a diagnosis of fibromyalgia.  

Widespread pain is one of the most common symptoms of fibromyalgia and the presentation of this pain can help doctors look into mimic diseases and rule those out.  One of the criteria for receiving a proper diagnosis for fibromyalgia is that the rheumatologist should be able to rule out any diseases that may explain the patient’s widespread pain and other symptoms they may be having.  

Many patients have received an early diagnosis of fibromyalgia, only later to have that diagnosis changed to a lupus diagnosis.  If doctors follow the ACR guidelines, it would appear that a mimic illness like lupus should be completely ruled out PRIOR to the patient receiving a fibromyalgia diagnosis.  Unfortunately, this has not been the case for many people.

fibromyalga or lupus
Fibromyalgia Trigger Points

The ACR has established the criteria below as a basis for a fibromyalgia diagnosis:

  • Pain and symptoms over the past week, based on the total of number of painful areas out of 19 parts of the body plus level of severity of these symptoms:

                     -Fatigue

                     -Waking unrefreshed

                     -Cognitive problems (memory or thought process)

  • Symptoms lasting at least three months at a similar level
  • No other health problem that would explain the pain and other symptoms

Being diagnosed with both lupus and fibromyalgia

Studies conducted estimate that around 25% of lupus patients also have a diagnosis of fibromyalgia.  It is very possible to be diagnosed with both lupus and fibromyalgia.  Having both of these illnesses can make it difficult for patients to understand whether its lupus or fibromyalgia flaring.  

Having a good rheumatologist can help patients understand the differences in symptoms the two and lab work can help doctors distinguish which illness may be causing particular symptoms.  Having both fibromyalgia and lupus can be very difficult.  The physical pain and domino flare effect can make life unpredictable for patients with both fibro and lupus.

Treatment for Lupus:

Treatment for lupus will vary greatly depending on a patients symptoms and conversations with their rheumatologist.  In 1948, Aspirin was the only drug approved for the treatment of lupus. In 1955, the FDA approved the use of hydroxychloroquine (Plaquenil) an antimalarial drug and corticosteroids for the treatment of lupus.   The only other drug to be approved for the treatment of lupus since is BenlystaAccording to the Lupus Foundation of America, BENLYSTA is a biologic medication that was approved for the treatment of lupus by the FDA on March 9, 2011.

While those are the only treatments that have been approved specifically for lupus, there are a few other treatments that are available to help manage lupus symptoms in some patients.

  • Nonsteroidal anti-inflammatory drugs (NSAIDs)
  • Immunosuppressants like Imuran, Azasan, CellCept, and Trexall (methotrexate)
  • Antibody Therapy with Rituxan
  • Antimalarials like chloroquine (Aralen) and hydroxychloroquine (Plaquenil) 
  • Biologics: Benlysta

Treatment for Fibromyalgia:

The treatment for fibromyalgia differs greatly from the medications used for treating lupus.  The first drug ever approved to treat fibromyalgia was Lyrica.  Another anti-seizure medication, Gabapentin (Neurontin) may also be helpful in patients managing their fibromyalgia pain.  Other medications may be used in people with fibromyalgia, depending on their specific needs.

These treatments for fibromyalgia can include:

  • Nonsteroidal anti-inflammatory drugs (NSAIDs)
  • Antidepressants like Duloxetine (Cymbalta) and milnacipran (Savella)
  • Anti-seizure Medications like pregabalin (Lyrica) and Gabapentin (Neurontin)

 




Ibkul UPF Sun Protective Shirts- Perfect for Lupus Warriors

I received this product in exchange for an honest review.  While this post may be sponsored, all opinions are my own and you will find my honest review of this product below.  

I recently wrote a post on why sun protection is extremely important for people with lupus.  After making the mistake of forgetting my sunscreen on a trip to my doctor’s appointment, I deeply acknowledge how forgetting my sunblock can easily and quickly cause people like me to experience lupus flares.  This has caused me to experiment with more sun protective products like UPF shirts to help manage my exposure to the sun.

I have been sensitive to the sun for many years, but feel that my photosensitivity has been increasing the last few years.  Whether I am breaking out in rashes, face and/or mouth sores, the sun has become an enemy for me.

It’s hard for people who do not suffer from photosensitivity to understand the hardships that a person can face when simply trying to live their life.  Many people take things like the sun for granted, peacefully soaking in the sun’s rays to melt away stress and anxiety.  I used to be one of those people.  I love the sun and the warmth it gives, but my body does not love the sun anymore…at all.

What is lupus?

Lupus is a chronic autoimmune disease that causes your immune system to mistakenly attack your own healthy cells and tissues.  Lupus is a chronic disease that can wreak havoc on your body in various ways. People with lupus may experience rashes, fatigue, malaise and joint pain.

Even if someone is diagnosed with a “mild” form of lupus, there is always a chance for it to progress into some form of internal organ involvement. Others affected with lupus may may present a more serious form of the disease with disabling central nervous involvement, heart of lung involvement, or kidney failure.

According to the Lupus Foundation of America, between 1.5 and 2 million US citizens live with lupus (5 million more worldwide).  Lupus is a serious disease that predominantly affects women.  In fact, 9 out of 10 lupus patients are women.

What can cause lupus to flare?

A lupus flare is a period where lupus symptoms may become active or get worse.  There are many circumstances that can trigger a flare in people with lupus.  While people with lupus can’t always prevent a flare, it is important to understand the various triggers so that you may be able to take preventative measures.

Any of the following can have the potential to cause a flare in people suffering from lupus:

-UV rays from both the sun and fluorescent lighting
-Sulfa Drugs
-Certain Medications
-Infections, Cold, or Viral Illnesses
-Any injury or traumatic event
-Surgery or Pregnancy
-Stress & Exhaustion

What is photosensitivity?

Having an increased sensitivity to UV rays means that a person is photosensitive.  Photosensitivity describes sensitivity to the UV rays from sunlight and even indoor fluorescent lighting.  In people with lupus, photosensitivity can cause an increase in disease activity.  2/3 of people diagnosed with lupus may experience photosensitivity to some degree.  40 percent to 70 percent of people with lupus will find that their disease is made worse by exposure to UV rays from sunlight or artificial light.  This can cause a lupus flare that may include a variety of dermatological symptoms like rashes and skin sores.

How can people with lupus stay safe from the sun?

-Broad Spectrum Sunscreen

-Wide Brimmed Hats

-Limit hours in the sun and opt for outdoor events held later in the evening.

-Sunglasses

-UPF Sun Protective Clothing

What is UPF clothing?

According to the Skin Cancer Foundation,

Ultraviolet Protection Factor (UPF) indicates how much UV radiation (both UVB and UVA) a fabric allows to reach your skin. For example, a UPF 50 fabric blocks 98 percent of the sun’s rays and allows two percent (1/50th) to penetrate, thus reducing your exposure risk significantly.

UPF sun protective clothing is clothing that provides protection from the sun.  UPF sun protective clothing can be very beneficial for people who suffer from photosensitivity, like those with lupus.  If you are someone who suffers from lupus and/or photosensitivity, it is vital you take actions to help limit sun exposure.   I am happy to have partnered with Ibkul to help promote awareness for sun protection.  I wanted to get a real-life patient perspective on their UPF clothing and if it would make a great solution to a daily problem millions of people around the world are dealing with.

ibkul upf sun protective clothing review

Ibkul Sun Protective UPF Shirts

Ibkul is a company that takes sun protection seriously.  Founded in 2015, Ibkul has been producing high-quality, performance-driven activewear that offers superior sun protection for people all over the globe.  Their clothing fabric finishes in IceFill, Solarball, and UMORFILL.  This innovate technology helps bring the ultimate in sun protection and fashionable wearability.

I am happy to have partnered with Ibkul to provide an honest review of their UPF shirts as a lupus warrior.  As someone who personally suffers from photosensitivity, I was honored to have the chance to see how well these products performed as a daily activewear solution for people like me.

Ibkul Long Sleeve Zip Mock Neck with IceFil Technology Review

I had to start my review with this amazing UPF shirt from Ibkul.  This long sleeve zip mock neck shirt is in the color “blue” and I am wearing a size large.  I can not say enough how much I actually LOVE this shirt.  Before we get into the specifics of this sun protective shirt, I want to talk about the aesthetics of this garment.

I absolutely love the vibrant color of this shirt and how the deep blue hue is absolutely stunning!  If you look online for UPF clothing, you may find that many of the choices available are plain or neutral colors and prints.  If you are looking for something a little more stylish and attention grabbing, Ibkul has an array of tropical and fashionable prints in a variety of vibrant colors.

I’m not sure if you noticed from the picture above, but this specific shirt has a mesh-like underarm lining that gives a bit of edginess to the shirt while allowing for comfortable cooling and circulation in the sun.  This is a piece that I can see myself wearing often.

ibkul upf sun protective icefil review
Check out this cool underarm mesh panel!

This shirt features Ibkul’s patented IceFil technology fabric.  This innovative fabric works by converting your sweat and cooling your skin 3-5 degrees!  I wore this UPF shirt on a recent trip I took with my husband and boys to the local sunflower patch.  It was a bright, hot and sunny day.  The temperature was around 80 degrees and I seriously stayed cool and dry while we trekked through the fields to check out the massive sunflowers!

Aren’t these sunflowers beautiful?

Not only does this super comfy shirt offer the cooling IceFil technology, but it has built-in UPF 50 sun protection!  According to the Skin Cancer Foundation, a fabric with a UPF of 30 to 49 offers very good protection, while UPF 50+ rates as excellent.  I am happy to say that after spending time in the sun, I did not wake up to any new rashes or mouth sores like I did from my car ride a few weeks prior.

Overall, I believe this moisture-wicking UPF shirt is honestly the best sun protective shirt I have tried.  Not only did I stay dry while wearing it out in the heat, I did so while being on Prednisone for my lupus.  If you have lupus, I am sure you understand the meaning behind how important this was for me.  Prednisone makes me sweat…A LOT lol.  I truly did not feel like I was wearing a long sleeve shirt because of the mesh panel and the breathability in the fabric.  Not to mention, Ibkul also used an antimicrobial design that promotes odor prevention and fabric ventilation.

ibkul upf sun protective icefil review
I stayed cool, dry, and comfy all day!

I really can’t get over how a shirt that is so beneficial to my health can also be really cute AND comfortable.  I feel like this specific one fits my personality and needs so perfectly.  I truly recommend this as your first purchase if you are looking to get serious about protecting yourself from the sun.  I promise you will want to wear it often!

Ibkul UMORFIL Long Sleeve Bomber Mock Neck Review

I was also given the opportunity to try out one of Ibkul’s UMORFIL technology shirts.  I received this sun protective shirt in the solid color “White” in a size Large.  Much like the IceFil shirt above, this UMORFIL shirt is nothing short of amazing.  UMORFIL originates from the combination of Latin ‘Umor’ and French ‘Fil’, whereas Umor means moisture and Fil means yarn.  This UPF shirt features a 1/4 zip mock neck zipper.  It provides the ample amount of sun protection coverage, while still allowing you to unzip it for extra breathability.

Ibkul’s UMORFIL technology works by ensuring your skin stays hydrated throughout the day with its special eco friendly fiber.  If you are a person who suffers from sensitive skin, this UPF shirt is the one for you!  The smooth and cool feeling of this material is unlike anything I have worn before.

Much like the IceFil shirt, the UMORFIL one also has an underarm mesh panel that provides even greater circulation.  This is one of my favorite features of Ibkul’s UPF shirts.  Yet, with this specific line, they take it a step further and have hidden side pockets!  If you are a pocket lover like me, you will truly appreciate the extra storage space this UPF shirt has to help you manage your small items while you are out enjoying your day.  The pocket is small but can easily fit your phone, keys, or cards.

Of course, this casual and airy UMORFIL shirt also provides UPF 50 protection, helping to protect your skin from UVA and UVB rays.  I love this classic white version because it is a piece that I can wear daily.  Whether you are attending and outdoor event, exercising, or just taking the kids to school; it’s important to incorporate UPF clothing into your daily wardrobe when you suffer from photosensitivity.

As a lupus patient, I realized I needed to be taking my sun protection more seriously than I had in the past.  I feel as though I am more sensitive to the sun these days and need to incorporate sun protection into my daily routine.  If you are looking for daily protection from the sun, I highly recommend choosing Ibkul’s IceFil or UMORFIL lines.  Both of these shirts are not only stylish and comfortable, they are also designed for their ultimate sun protection and cooling effects.

After browsing their online shop, I now have my eyes set on one of their UPF dresses.  Yes…you heard me right!  Ibkul even offers a variety of UPF dresses in gorgeous prints.  I specifically am eager to get their Liz Print Long Sleeve Crew Neck Dress.  Isn’t it beautiful?!

As lupus warriors, we must take sun protection seriously.  It may seem difficult to ensure the proper sun protection daily, but having a few quality pieces of UPF clothing can be an easy way to protect your skin from the sun’s harmful rays.  Let me know if you have tried Ibkul’s sun protective clothing in the comments below.




Why is Sun Protection Important for Lupus Warriors?

Lupus is such a crazy disease. Last Wednesday, I had my appointment to go over my post cancer scans. I had to drive a little over an hour each way.

Running late as usual lol, I forgot to put on sunscreen before I left. I figured it wouldn’t be a big deal because I wasnt actually going to be out in the sun ‘like that’. But you see, lupus had other plans.

That night, I noticed I was slightly sunburned only on my left arm. I then broke out in a rash only on that side. All from the sun while driving to my appointment.

By Thursday night, I felt a sore forming [painless this time around] in the roof of my mouth. By Saturday morning, I was in a full flare and now am getting sores on my lips and skin above my lip. Ever since December, this seems to be a common thing for me when I flare now  Not to mention the God awful fatigue and joint & muscle pain.

Im sharing these pictures to show that sun protection is SO IMPORTANT for lupus warriors. We think if we just run out to the store for a few, that we will be ok.

I am here to tell you that is not always true. My rheumy told me to wear sunscreen when I was diagnosed, even when just picking the kids up from school. I now see why.

Stress and the sun are major flare triggers for me personally. While it is hard to escape either in life, there are so many things you can do to help limit your exposure to both.

Sun:

-Use a broad spectrum sunscreen with at least 50 SPF
-Sun Protective/UPF Clothing
-Wide Brimmed Hats
-Sunglasses
-Limit outdoor activities until the evening if possible

Stress:

-Cut out toxic people!!
-Meditate or Pray for a few minutes each day
-Discover a hobby and spend a few times each day working on something YOU love and make this a daily thing.
-Take a rest day!!
-Yoga
-Take a social free day….we all should do this at some point




Tips for Getting Better Sleep with Lupus 

I cannot wait to share this sponsored post with you!  When fellow blogger James from SustainablePlanet.ca. asked me to share his new tips on sleeping better with lupus, I was so excited because I knew that you would love it!  

What is lupus?

Lupus is an autoimmune disease that causes the immune system to attack the body’s organs and tissues. 

Widespread inflammation caused by lupus can affect your skin, joints, organs, brain and blood cells. For this reason, lupus is characterised by a variety of symptoms all over the body, including weight loss, kidney disease, mouth ulcers, swollen ankles, skin rashes, achy joints, chest pain, fever, fatigue, and sleep disorders.

Lupus and Sleep

It has been estimated that around 61% of people with lupus report that they do not feel refreshed after a night of sleep. If you have lupus, you may notice that you have restless sleep, or a poor quality of sleep. You may have problems falling asleep, or can’t stay asleep for a long enough duration. You may find it difficult to fall back into a deep sleep after waking up at night. 

Lying awake at night thinking about how you are not sleeping can actually make the problem worse, too. The more you worry about your lack of sleep, the more aware you are that you are still awake – the less likely you are going to drift off. 

Luckily, there are things you can do to help you sleep better with lupus. Read on for some of our top tips for sleeping soundly through the night. 

better sleep with lupus

1. Stop using “blue light” before bedtime

There are a number of common tech devices of today that emit something called blue light. This light inhibits your body’s natural ability to prepare for sleep because it blocks melatonin, the hormone that controls our sleep-wake cycle. When melatonin would usually trigger us to feel sleepy before bed, overexposure to blue light can block melatonin’s release. The only way to avoid messing with your sleep cycle is to stay away from blue light, from televisions or phone screens, before bed. 

2. Keep your room cool and dark

Your sleeping environment is more important than you might think. If your curtains or blinds let in a lot of light, this may stimulate a nerve from the eye to the part of the brain that controls sleep hormones. Just like blue light, natural daylight blocks melatonin from promoting sleepiness when it is time for bed. Heat, on the other hand, is just plain uncomfortable, and you will find it more difficult to get to sleep and stay asleep when lying in a hot room. Buy some blackout blinds and a fan and your sleep cycle will improve massively. 

3. Try getting an adjustable bed

A major advantage of an adjustable bed is that it allows you to lie in the most comfortable sleeping position for proper rest. When your back and spine are supported, you are less likely to experience misalignment, which can cause you to wake up in the night with neck, back or shoulder pain. Even better if your adjustable bed has a comfortable mattress, preferably memory foam, that will conform to the shape of your body rather than creating pressure points. 

4. Block out sound

Many people with lupus are restless sleepers, and even if you don’t live on a busy road, you may still be disturbed by every single noise around you – including your partner’s breathing. If you think your sleep is being affected by noises you have no control over, do what you can to block out sound. Some people find that a pair of professional ear plugs does the trick. If you would rather not obstruct your hearing entirely, you can instead play white noise or switch on a fan to provide a soothing backing track, which will hopefully cut out all those disturbing sounds. 

5. Try the “15-minute rule”

Sometimes, you just have to accept that for the moment, sleep isn’t happening. If you have been tossing and turning for what feels like hours, try the 15-minute rule, which instructs you to get out of bed and go into another room if you are not asleep after 15 minutes. Make sure your chosen activity is relaxing, like reading a book or meditating, and avoid the TV. When you feel sleepy enough, head back to bed and try again. Don’t beat yourself up if you have to repeat this process several times before falling asleep. 

6. Stick to a sleeping pattern

Having a proper sleeping pattern is essential if you want to establish a healthy sleep-wake cycle. When you maintain a regular sleep schedule, even while on vacation and on the weekends, you can help to keep the body’s internal clock consistent, allowing you to fall asleep and wake up more easily. So if you are tempted to stay up late to watch another episode of your favourite Netflix show, think again: it could throw your sleep schedule completely off whack.

7. Exercise frequently

You may know that high-intensity exercise is often a bad idea if you have a flare-up of lupus symptoms, because it may damage inflamed joints and muscles and worsen fatigue. But without exercise, you will find it much more difficult to fall asleep, so try low-impact exercise like swimming, yoga and walking. When we exercise, we experience a rise in body temperature. When our temperature drops after exercise, it triggers feelings of sleepiness. Tiring out our bodies also makes us naturally more prepared for sleep, no matter what time of the day we exercise. Try to exercise for 30 minutes a day for maximum benefits. 

8. Manage your pain

One of the biggest causes of bad sleep in people with lupus is pain from flare-ups. That is why it is incredibly important to learn how to manage your symptoms instead of deciding to just grin and bear it. If you feel pain, you won’t feel relaxed, which is what you need to fall asleep. Your doctor may prescribe you with anti-inflammatory drugs for pain caused by swelling in your muscles and joints. You may also find that natural painkillers, like hemp oil, work well for you. Even a hot water bottle before bed may help to soothe your joints and help you to relax before sleep. 

9. Consider your diet

Eating too close to bedtime can make it very difficult to fall asleep, as feeling too full or experiencing reflux and indigestion can be very uncomfortable. But you should also avoid going to bed feeling hungry, so it is best to have a light snack one or two hours before bedtime. If you have lupus, you will already know the importance of following a healthy diet plan, especially if your sleep is suffering. Avoid foods that can interfere with sleep, such as heavily processed foods, and foods that are high in sugars and carbohydrates. 

10. Avoid napping

If you are sleeping poorly at night, it can be tempting – or necessary – to have a nap in the middle of the day. The problem with doing this is that it confuses the body’s sleep cycle even more, so that come night-time, it doesn’t feel prepared for sleep. If you are going to nap, try and limit your hours of sleep to between 30 and 60 minutes per day. Scheduling your naps is also a good idea, as it can allow your body to become used to your daily routine. Try not to nap too close to bedtime, as this will affect your ability to sleep at night.

James is a Torontonian who enjoys writing, fishing, skiing, canoeing and playing badminton in his free time. You can find him at SustainablePlanet.ca.




Results From My First Post Kidney Cancer Scans

This week, I finally had the appointment I had been waiting for, my first post cancer scans.  Since having a kidney tumor and a small part of my right kidney removed in November of 2019, I have been anticipating this scan for a variety of different reasons.

First, obviously I wanted to make sure that my Clear Cell Renal Cell Carcinoma was not back.  You may have heard the term “Scanxiety” used before and let me tell you, it’s a real thing.

first post cancer scans
On my way to my first post cancer scans.

I went and saw my awesome uro-oncologist and am happy to say that my CT scans did not show any recurrent cancer in my kidney or elsewhere.  To hear that is indeed a relief!

 

post renal cell carcincoma ct scans
My post renal cell carcinoma ct scans from June 2020.

As you can see in my CT scan results, everything was pretty normal on my scans except the findings that my liver is enlarged and they believe I now have Fatty Liver Disease.  I was told it is pretty common and that drinking alcohol,  being overweight, diet and exercise could all play a part in its development.  I barely drink alcohol anymore due to the meds I am on, specifically Methotrexate.

So, that leaves the food I eat and my [lack of ] exercise routine and chubbiness as possible causes lol.  Its definitely not funny per se, but just another addition to my plate.  I laugh because it’s a coping method and truth that I need to get my shit together and take care of the things that ARE in my control and my diet and exercise routine are definitely part of that.

My doctor was not too concerned with it at the moment, but said that it is something that they will watch for sure on future scans.  Of course, I feel I am more concerned about it and it has really initiated a drive in me to really get my eating habits under control. I have to find a way to ensure that I am eating as healthy as possible while also making time and a way for me to get some exercise in daily.  If it were easy, I wouldn’t be in this predicament today.  Having lupus makes it difficult to really do any high impact exercise, so I am hoping to begin my journey with light walking.

At this appointment, we also went over the results of my Genetic Cancer Screening.  I had already met with my genetic counselor  virtually a few weeks ago to go over my test results.  I am also happy to state that all of the genetic tests that were tested, I came back negative for all of them.  I will be writing a separate post in more detail on what my genetic cancer testing experience was like soon.

My genetic counselor informed that I should retest in a few years in case there are more research breakthroughs for genetic markers for my clear cell renal cell diagnosis.   I feel that this may truly be the case in my situation, as I just find it too coincidental that my maternal grandmother passed away from kidney cancer in her 40s.

My uro oncologist believes  that smoking plays a significant role in my personal cancer, as that I am a female and young [although at 33 now, I don’t feel young LOL].  I have successfully quit smoking a few times in the past, only to fail and start again.  I am DETERMINED to finally quit once and for all, but it is definitely a hard battle.  Especially as someone who deals with chronic anxiety.  Hey, I never said I was perfect…just a real live lupus warrior trying to make it in life.

Yet, really do I have a choice at this point?  I MUST learn to change my ways as I have been given so many chances with my health.  I like my uro-oncologist because he is a personable doctor but he is straight to the point.  So while I hate to admit my smoking issues, he knows that it is something I need to work on for my own health and I appreciate his honesty and directness.

If you have followed my blog, you probably know that I have had an issue with chronic hematuria.  I have had microscopic blood in my urine for the past few years and there has never been a direct cause to these abnormal urine samples.  In 2017, I had a Cystoscopy done to see if they could find a reason for why I kept having blood in my urine.

I did NOT have a great experience with that procedure LOL.  It was with another urologist and I felt he lacked a lot of bedside manner, including explaining exactly what the cystoscopy entailed.  While it was a quick procedure, it was uncomfortable and was quite painful to me personally.  I also bled for about 2 days afterwards and experienced burning during urination, much like how a bad UTI would feel.

At my recent appointment, my new uro-oncologist suggested we do a quick check to make sure that everything in my bladder looks good and to see if there was anything else to rule out in regards to my chronic blood in urine.  I explained my past experience to him LOL, and he promised that he would be gentle and the nurse explained the whole thing in detail.

first post cancer scans
first post cancer scans

I am booked for this procedure in a couple of weeks and am hoping they can finally find a cause to the chronic blood in my urine.  Originally I was told it was possible it was from a kidney stone after that first cystoscopy, but that stone stayed put until the fall of 2018.  I then had noticeable blood in my urine and ended up hospitalized with a bad kidney infection as the stone was making its way out.  I thought that would finally solve the chronic hematuria mystery, but the blood continued in almost every single urine sample I had done.

A year later, is when my kidney tumor was discovered and I felt like this would be the cause of the blood.  But I have had about 6 urine tests since and all have still contained microscopic blood.  With my most recent urine test, my rheumatologist actually sent it off for a culture to make sure there was not an underlying infection, but they found nothing but normal cells and bacteria.  Nothing they considered too alarming and was asked when my next uro appointment was.  This was a few weeks before my scans, so they decided to let me discuss it further with my specialist.

So as my lupus journey continues, there are still so many health mysteries to be unravelled for me personally.  I am still unsure about the chronic high white blood cell count they believe is reactive to lupus or the chronic hematuria that is always blamed on other issues.  I feel as though we are all missing something .

Maybe that’s the anxiety many of us chronic illness warriors face.  We know what it’s like to go through years of not understanding what is happening to our bodies, years of being dismissed by doctors, or not having our questions answered well enough.  I believe that all that past medical trauma has led me to a certain distrust of doctors and the fact that they may not take me seriously.  Yet, I do not allow those feelings to stop me from asking questions.

It is important for us to always ask questions if we do not completely understand scan results, test results, or procedures.  We truly are our own best advocates and I believe that our voice is the most powerful tool when it comes to our healthcare and well-being.  I have lucked out with the doctors I have now because I truly believe they treat me with dignity and respect and are never annoyed with my questions and even questioning their answers lol.

They are awesome and I know it’s not an easy job for them, but I truly am SO thankful to have such a great health team taking care of me.  It’s a luxury not afforded to most, and  I know because I have been that patient in the past.  I wish that every patient could have a great relationship with their doctors because it is so vital for chronic illness patients to know the most up to date information about their health.

I will update you guys in a few weeks if they end up finding anything after my Cystoscopy.  Until then, stay strong and keep fighting!

 




Lupus and a High White Blood Cell Count

For the last 3 or so years, I have been experiencing lupus and a high white blood cell count.  Having a high white blood cell count and lupus is not something you hear about often.  In fact, one of the criteria for a lupus diagnosis is actually the opposite.  Over the last few years, my white blood count has ranged from 12k-24k.

In early March of 2018, my rheumatologist ran some routine blood work.  It was noted that my white blood count was high again.  They decided it was time for me to be referred to a hematologist to make sure there was not anything else going on besides my lupus.  You can find my many labs and chronic high white blood cell counts from the last two years below.

My Lab Results in Early March 2018 that finally prompted me to be referred after numerous high wbc counts previously.

Component: WBC
Standard Range:4.1-10.5
Your Values:16.0Abnormal
Comments:
Standard Range:8.0-38.0
Your Values:18.9
Component: MIDs%
Standard Range:0.0-10.0
Your Values:5.4
Component: Granulocytes%
Standard Range:54.0-87.0
Your Values:75.7
Component: Lymphocytes#
Standard Range:0.6-2.6
Your Values:3.0Abnormal
Component: MIDs#
Standard Range:0.0-0.7
Your Values:0.9Abnormal
Component: Granulocytes#
Standard Range: 2.2-8.2
Your Values:12.1Abnormal
Component: RBC
Standard Range:3.80-4.95
Your Values:4.77
Component: Hemoglobin
Standard Range:12.0-15.0
Your Values:14.2
Component: Hematocrit
Standard Range:35.4-43.7
Your Values:41.5
Component: MCV
Standard Range:80-97
Your Values:87
Component: MCH
Standard Range:25-35
Your Values:30
Component: MCHC
Standard Range:32.0-37.0
Your Values:34.1
Component: RDW
Standard Range:11.0-15.0
Your Values:11.7
Component: Platelet Count
Standard Range:130-400
Your Values:275

Every single time it has been found to have been neutrophils that are incredibly high.  My rheumatologist referred me to a hematologist a few weeks after this test.

The labs that I had completed at my first visit at  the end of March 2018 with the hematologist were:

Lab Result Range Source
Basophil count (BA #) 0.1 x 10^3/uL 0 – 0.3
Basophil, percent (BA %) 0.4% 0 – 1.6
Basophil, percent (man) (Basophil %) 0% 0 – 2
Eosinophil count (EO #) 0.3 x 10^3/uL 0 – 0.6
Eosinophil, percent (EO %) 1.6% 0 – 6
Eosinophil, percent (EO %) 2% 0 – 8
Hematocrit determination (HCT) 41.1% 34 – 46
Hemoglobin determination (HGB) 14.2 g/dL 11.4 – 15.2
Lymphocyte count (LY #) 3.1 x 10^3/uL 0.9 – 4
Lymphocyte, percent (LY %) 23% 12 – 48
Lymphocyte, percent (LY %) 20.4% 18 – 44
Mean corpuscular hemoglobin determination (MCH) 30.7 pg 27 – 33
Mean corpuscular hemoglobin concentration determination (MCHC) 34.5 g/dL 32.5 – 35.5
Mean corpuscular volume (MCV) 89 fL 81 – 95
Monocyte count (MO #) 0.9 x 10^3/uL 0.3 – 0.9
Monocyte, percent (MO %) 3% 0 – 13
Monocyte, percent (MO %) 5.7% 1 – 10
Neutrophil count (Neu # (ANC)) 11.1 x 10^3/uL 1.7 – 7
Neutrophil, percent (Neu %) 71.7% 46 – 74
Platelet count (PLT) 286 x 10^3/uL 150 – 415
Red blood cell count (RBC) 4.62 x 10^6/uL 3.85 – 5
Red cell distribution width determination (RDW) 13.4% 11.5 – 15.5
White blood cell count (WBC) 15.4 x 10^3/uL 4.1 – 10.3
Albumin measurement (Albumin) 4.9 g/dL 3.5 – 5
Alkaline phosphatase measurement (Alkaline phosphatase) 72 U/L 25 – 150
Urea nitrogen measurement (BUN) 5 mg/dL 5 – 26
Bicarbonate measurement (CO2) 23 mmol/L 20 – 32
Calcium measurement (Calcium) 9.8 mg/dL 8.4 – 10.5
Chloride measurement (Chloride) 105 mmol/L 96 – 109
Creatinine measurement, serum (Creatinine) 0.6 mg/dL 0.7 – 1.2
Glucose measurement (Glucose) 95 mg/dL 65 – 99
Potassium measurement (Potassium) 4 mmol/L 3.5 – 5.5
Sodium measurement (Sodium) 141 mmol/L 135 – 145
(BCR/ABL interpretation) NEGATIVE…
Immunoglobulin A measurement (IgA, quant) 121 mg/dL 70 – 400
Immunoglobulin G measurement (IgG, quant) 731 mg/dL 700 – 1600
Immunoglobulin M measurement (IgM, quant) 26 mg/dL 40 – 230
Lactate dehydrogenase measurement (LDH) 212 U/L 135 – 214
Albumin/Globulin ratio (A/G ratio) 1.8
Alanine aminotransferase measurement (ALT/SGPT) 33 U/L 0 – 52
Aspartate aminotransferase measurement (AST/SGOT) 25 U/L 0 – 45
(BUN/Creatinine ratio) 8.33
Bilirubin, total measurement (Bilirubin, total) 0.6 mg/dL 0.1 – 1.2
Globulin measurement (Globulin) 2.8 g/dL
(Polys, serous fluid) 72% 36 – 78
Protein measurement (Total protein) 7.7 g/dL 6 – 8.5

 

After running many tests, they still were unable to pinpoint the exact cause of my neutrophilia.  As you can see in my labs above, many of my labs and tests that were ran were pretty normal besides the white blood count of 15k and specifically the increased neutrophils. My IGM and my Creatinine came back a little low, but no one really mentioned anything about those.

My results pretty much remained steady with a high WBC for the next year.  In July of 2019, my rheumatologist wanted me to go back to the hematologist because my wbc was actually beginning to climb higher up to 19k.

Component:WBC
Standard Range:3.8-10.5
19.2Abnormal
Component:Lymphocytes%
Standard Range:8.0-38.0
Your Values:19.4
Component:MIDs%
Standard Range:0.0-10.0
Your Values:5.4
Component:Granulocytes%
Standard Range:54.0-87.0
Your Values:75.2
Component:Lymphocytes#
Standard Range:0.6-2.6
Your Values:3.7Abnormal
Component:MIDs#
Standard Range:0.0-0.7
Your Values:1.1Abnormal
Component:Granulocytes#
Standard Range:2.2-8.2
Your Values:14.4Abnormal
Component:RBC
Standard Range:3.80-4.95
Your Values:4.96Abnormal
Component:Hemoglobin
Standard Range:12.0-15.0
Your Values:15.0
Component:Hematocrit
Standard Range:35.4-43.7
Your Values:45.0Abnormal
Component:MCV
Standard Range:80-97
Your Values:91
Component:MCH
Standard Range:25-35
Your Values:30
Component:MCHC
Standard Range:32.0-37.0
Your Values:33.5
Component:RDW
Standard Range:11.0-15.0
Your Values:12.1
Component:Platelet Count
Standard Range:130-400
Your Values:286

This time, I had high lymphocytes, granulocytes, RBC, and Hematocrit.  So, back to to the hematologist I went for further testing and more blood work.

In August of 2019, my amazingly caring hematologist ran a TON of tests and took many tubes of blood. 

Lab Result Range Source
Basophil count (BA #) 0.1 x 10^3/uL 0 – 0.3
Basophil, percent (BA %) 0.3% 0 – 1.6
Basophil, percent (man) (Basophil %) 1% 0 – 1
Eosinophil count (EO #) 0.1 x 10^3/uL 0 – 0.6
Eosinophil, percent (EO %) 0% 0 – 5
Eosinophil, percent (EO %) 0.7% 0 – 6
Hematocrit determination (HCT) 43.1% 34 – 46
Hemoglobin determination (HGB) 14.8 g/dL 11.4 – 15.2
Unsaturated iron binding capacity measurement (Iron, % saturation) 12% 20 – 55
Lymphocyte count (LY #) 2.8 x 10^3/uL 0.9 – 4
Lymphocyte, percent (LY %) 21% 13.7 – 50.9
Lymphocyte, percent (LY %) 14.3% 18 – 44
Mean corpuscular hemoglobin determination (MCH) 30.8 pg 27 – 33
Mean corpuscular hemoglobin concentration determination (MCHC) 34.3 g/dL 32.5 – 35.5
Mean corpuscular volume (MCV) 90 fL 81 – 95
Monocyte count (MO #) 1.1 x 10^3/uL 0.3 – 0.9
Monocyte, percent (MO %) 5.5% 1 – 10
Monocyte, percent (MO %) 3% 3 – 11.9
Neutrophil count (Neu # (ANC)) 15.8 x 10^3/uL 1.7 – 7
Neutrophil, percent (Neu %) 79.2% 46 – 74
Platelet count (PLT) 330 x 10^3/uL 150 – 415
Red blood cell count (RBC) 4.8 x 10^6/uL 3.85 – 5
Red cell distribution width determination (RDW) 13.1% 11.5 – 15.5
White blood cell count (WBC) 19.9 x 10^3/uL 4.1 – 10.3
Albumin measurement (Albumin) 4.6 g/dL 3.5 – 5
Alkaline phosphatase measurement (Alkaline phosphatase) 90 U/L 25 – 150
Urea nitrogen measurement (BUN) 6 mg/dL 5 – 26
Bicarbonate measurement (CO2) 25 mmol/L 20 – 32
Calcium measurement (Calcium) 10.1 mg/dL 8.4 – 10.5
Chloride measurement (Chloride) 104 mmol/L 96 – 109
Creatinine measurement, serum (Creatinine) 0.57 mg/dL 0.7 – 1.2
Glucose measurement (Glucose) 113 mg/dL 65 – 99
Potassium measurement (Potassium) 3.9 mmol/L 3.5 – 5.5
Sodium measurement (Sodium) 139 mmol/L 135 – 145
Vitamin B12 measurement (Vitamin B12) 526 pg/mL 211 – 911
(Myeloid/Lymphoid + acute leukemia analysis, flow cytometry) NEGATIVE…
Albumin/Globulin ratio (A/G ratio) 1.5
Alanine aminotransferase measurement (ALT/SGPT) 23 U/L 0 – 52
Aspartate aminotransferase measurement (AST/SGOT) 16 U/L 0 – 45
(BUN/Creatinine ratio) 10.53
Bilirubin, total measurement (Bilirubin, total) 0.4 mg/dL 0.1 – 1.2
Folic acid measurement, serum (Folate, serum) 14.76 ng/mL

 

AND MORE TESTS……….

Iron measurement (Iron) 40 ug/dL 37 – 145
(JAK2 gene mutation) NORMAL…
(Polys, serous fluid) 75% 37.1 – 78.1
(TIBC) 325 ug/dL 228 – 428
Protein measurement (Total protein) 7.6 g/dL 6 – 8.5

 

At this appointment is when I had reached a point of hopelessness.  I felt like shit all the time and knew that something else besides lupus had to be going on.  I expressed my concerns to my hematologist and she believed that a CT scan should be conducted to at least rule out any other possible causes of my chronic high white blood count.  Little did I know how much my own advocacy and a great doctor had a direct impact on what would happen next in my health journey.

The results of my CT scan from September of 2019:

FINDINGS:

Chest:

  • The central airways are patent.
  • There is mild bilateral bronchial wall thickening.
  • There is mild patchy airspace opacity within the anterior right upper lobe.
  • A 5 mm subpleural nodule in the left upper lobe is unchanged, likely benign.
  • No pleural effusion or pneumothorax.
  • Heart size is normal.
  • No pericardial effusion.
  • No aortic aneurysm or dissection.
  • Visualized thyroid is unremarkable.
  • Small mediastinal lymph nodes are unchanged from 2016, probably reactive.
  • Small bilateral axillary lymph nodes are also unchanged.

Abdomen and pelvis:

  • There is fatty infiltration of the liver.
  • Prior cholecystectomy.
  • No significant biliary dilation.
  • The pancreas is unremarkable.
  • The spleen size is normal.
  • No adrenal mass.
  • No hydronephrosis.
  • There is a 1.9 x 1.6 cm upper pole right kidney mass with mild internal enhancement, image 78.
  • A small right kidney cyst is also seen.
  • The bladder is unremarkable.
  • There is a 3.0 cm right ovarian cyst with mild peripheral enhancement.
  • No bowel obstruction or focal inflammatory changes.
  • The appendix is unremarkable.
  • Tiny amount of free fluid is seen in the right adnexal region which appears mildly complex.
  • No free air.
  • No aortic aneurysm or dissection.
  • No pathologically enlarged lymph nodes.

Musculoskeletal:

  • No acute fracture.
  • No suspicious lytic or blastic lesions.

IMPRESSION:

1. Mild airspace opacity within the anterior right upper lobe may be infectious. Recommend follow-up to resolution.
2. Stable subcentimeter left lung nodule, unchanged from 2016.
3. A 1.9 cm enhancing mass is seen within the right kidney. Malignancy not excluded. Consider MRI for further evaluation.
4. Small mildly complex right ovarian cyst with a tiny amount of adjacent fluid. This can be further evaluated with ultrasound. 5. Additional incidental findings described above.

 

I didn’t lie when I said I was a medical hot mess.  They found out during this CT scan that I pneumonia (had no idea I even had it), an enhancing mass that eventually lead to my lupus and kidney cancer story.  They also discovered I had a complex cyst on my ovary that they were unable to tell if it was a normal cyst that was beginning to hemorrhage or if it was something more than a simple cyst.  I didn’t lie either when I said I am in chronic pain daily that I literally can not tell whats what anymore.  My hematologist then referred me to a uro-oncologist and a gyno-oncologist.  The fall was filled with multiple appointments and scans and even more lab work.

While I was definitely freaked TF out about finding out I had a tumor on my kidney, I felt relieved in the fact that I believed it was the source of my chronic high WBC and chronic hematuria I have been having for the last few years.  I felt like those were 2 mysteries that I could finally put to rest because at least this HAD to be the reason for it.

Shortly before my surgery for Clear Cell Renal Cell Carcinoma, my uro-oncologist ran some pre-surgery blood work.  They called me when they saw how high my white blood counts were and were concerned that I had an underlying infection.  You can see in my results below, my WBC was now over 20k.

lupus and high wbc
My high WBC about a week before my kidney cancer surgery.

 

Concerned about the possibility of an underlying infection or possibly the pneumonia still raging, I went to the ER about 2 days later.  I had a CT scan that showed the pneumonia was gone and they even ran blood cultures to be sure that nothing else was going on and they came back negative as well.

These are the results from that CBC:

lupus and high wbc

After seeing the results of my CT scan and negative blood cultures, my surgery was scheduled.  I had blood work taken the morning of my surgery and while my WBC went down a little, it was still over 21k.

lupus and high wbc

A few weeks after my surgery, I had a follow up appointment with my hematologist.  She also ran a CBC panel and my WBC dropped to 17k.  Once we discussed the tumor that had been found and removed along with my still high WBC, she schedule a bone marrow biopsy to ensure that nothing else was causing my WBC.  Once the results came back for the bone marrow biopsy, it was believed that my high white blood count was reactive to lupus.

Result of Bone Marrow Biopsy:

DIAGNOSIS: BONE MARROW; CORE BIOPSY, CLOT AND ASPIRATE SMEARS: SLIGHTLY HYPERCELLULAR MARROW SHOWING MATURING TRILINEAGE HEMATOPOIESIS WITH MILD MYELOID HYPERPLASIA. NO INCREASE IN BLASTS, SEE COMMENT. COMMENT: The above findings are non-specific and likely reactive. 

As you can tell, the fall was crazy with a ton of blood drawn, more tests than I can count, cancer surgery, a bone marrow biopsy and more doctor visits.  By January, I was OVER going to the doctor.  I took a few weeks to gather myself after the holidays and then COVID happened.

One of the first appointments I had once places began to reopen was with my rheumatologist.  He also took some standard blood work and I was able to see that my WBC was still high, even months after having my surgery.  It seems the consensus is that lupus and the associated inflammation is causing my chronic high white blood counts.

lupus and high white blood cell count
Lab results in March 2020 showing a high WBC.

 

lupus and high white blood cell count
Recent lab results from May 2020 labs still showing a high WBC.

Lupus and a High White Blood Cell Count

You can see how my white blood count continues to rise and fall but seems to remain chronically high.  I still questioned if my rheumatologist agreed with the bone marrow biopsy from my hematologist because there is not a lot of literature online about lupus and a high white blood cell count.

He assured me that he has had patients who have had similar findings in regards to lupus and their WBC being high.  This helped me feel a little better, but I still have this anxiety that something else may be going on and they just haven’t been able to figure out exactly what.  After the last couple years of medical surprises, this honestly would not be surprising.

Have any of you experienced lupus and a chronic high white blood cell count?




Epstein-Barr Virus and Autoimmune Diseases

Autoimmune diseases are a set of complex body disorders with no clear pathological causes. Recently, many research studies have linked the Epstein Barr virus as a potential causative agent.

Before understanding the link between the Epstein Barr virus and autoimmune diseases, let’s have a brief introduction about these two entities.

 

the epstein barr virus and autoimmune diseases
the epstein barr virus and autoimmune diseases

Autoimmune Diseases:

An autoimmune disease is the one that causes the body’s immune system (that is meant to defend the body organs) to start attacking its own organs. The immune system is the defense force of body which protects it from various kinds of infections and diseases. Autoimmune diseases use inflammation as a weapon to wreak havoc with the body.

Therefore, it makes them unable to carry out their normal functions. Hashimoto’s thyroiditis was the first disease to be included in the autoimmune category. Some of the major autoimmune diseases include lupus, multiple sclerosis, celiac disease, inflammatory bowel disease, type 1 diabetes, juvenile arthritis, psoriasis and rheumatoid arthritis.

These diseases can involve any part of the body; skin, joints, muscles, blood and glands being the common target sites.

About 24 million Americans are affected by autoimmune diseases.

Till date, there is no satisfactory treatment for autoimmune diseases and they can exert severely debilitating effects in affected person.

Epstein Barr Virus:

Epstein-Barr virus (EBV) and Autoimmune Diseases
Epstein-Barr virus (EBV) and Autoimmune Diseases. Source: National Cancer Institute

Epstein Barr virus belongs to the herpes family of viruses and is strikingly common in humans. About 95% of the population is infected by this virus by the age of 20. It is famous for causing mononucleosis; also known as kissing disease.

This virus is transmitted by means of saliva or kissing hence named as kissing disease. Kissing disease is not fatal and tends to resolve on itself. The virus becomes dormant and stays in the body forever in a dormant stage.

However, its linkage with autoimmune disorders is really alarming due to the extremely common prevalence of Epstein Barr virus.

Can Epstein Barr virus really cause autoimmunity?

The answer to this multi-million question is yet to be found, unfortunately. After years of studies by many kinds of research, the answer can be given as ‘perhaps’ or ‘may be’. We have collected many hints that point towards EBV being the main culprit behind autoimmune disease but we still lack solid proof.

What is the basis of linking Epstein Barr virus with autoimmunity?

Here are a few reasons established by the hard work of many types of research:

  • Epidemiological studies show that about 85-90% of SLE (systemic lupus erythematosus) patients were seropositive for Epstein Barr virus. Since the infection rate is less in children so pediatric data was collected. It showed that EBV was positive in 91% of the SLE affected babies against the 70% prevalence in the control group. A similar study was conducted in patients of MS (multiple sclerosis) which is another common autoimmune disease. It was observed that MS was present in people who were positive for EBV. The incidence of MS was close to zero in serum-negative population. Epstein Barr virus seroconversion greatly raised the bar of getting multiple sclerosis later in life.

 

  • B lymphocytes or B cells are normally responsible for attacking the foreign intruders like viruses and bacteria and their number tends to decrease with advancing age. However, the number of B cells was unusually high in patients with autoimmune disorders like SLE. During the flare-up of SLE, there was a significant increase in the number of EBV- affected B cells. Studies have reported a 40% increase in Epstein Barr virus load in autoimmunity as compared to healthy individuals.

 

  • A certain protein produced by EBV, named as EBNA2, was documented to be present in the human genome in certain locations that are associated with autoimmunity.

How EBV does increase the risk of autoimmune diseases?

Epstein Barr virus has got a natural ability to dodge and manipulate our immune system. The picture of its tricky mechanism which alters the normal genomic sequence towards autoimmunity is still blurred.

Before moving ahead to understand the mechanism of EBV in easy words, it’s mandatory to mention the name of Dr. John Harley and his team here.

Dr. John Harley has produced the most advanced and authentic evidence on the link between EBV and Autoimmune diseases. He worked at Cincinnati medical Centre and set the foundation of understanding the role of EBV in autoimmunity.

As mentioned above, B lymphocytes are the main soldiers of our immune system that are trained to attack any foreign invaders like viruses and bacteria. B cells engulf that harmful agent and keep our body protected from hundreds of harmful microorganisms.

FBV attacks and gains the control of this main immune cell culminating in autoimmunity. After Epstein Barr virus gains control of B cell, it starts replicating freely in humans cells producing a protein named as EBNA2. This protein gets inserted in DNA (human genome) and changes the normal sequence to faulty ones.

A specific set pattern of coding or genes is responsible for cell growth and production of normal healthy proteins required for viability of cells. After getting infected by EBV, these faulty sequences further produce proteins known as variants (like lupus variants) which increase the risk of autoimmunity and work as a trigger.

During this process, EBV uses transcription factors as a switch. Transcriptions factors are signaling proteins that can activate or deactivate a gene sequence; hence can start or halt the production of resulting proteins.

Epstein Barr virus starts making its own transcription factors and keeps on producing faulty undesired proteins as a result.

The future of Autoimmunity and EBV:

Having a strong base of available shreds of evidence and the addition of the latest technology, we may have a breakthrough in the near future.

Cincinnati medical team has formulated new biochemical software that has a capacity of comparing large numbers of genomic data of autoimmune diseases with healthy individuals. This software is public and has been named as RELI (Regulatory Element Locus Intersection). The discovery of transcriptions factors has provided a direction to reach the conclusion.

Since we don’t have any cure for autoimmune diseases; researchers are striving to find preventive measures. The development of some vaccine against EBV that has the capacity to quarantine of limit the activity of virus will be huge prevention to avoid these agonizing autoimmune diseases.  

 

References:

  1. https://www.nih.gov/news-events/nih-research-matters/epstein-barr-virus-autoimmune-diseases
  2. https://www.cincinnatichildrens.org/news/release/2018/mono-virus
  3. Pohl D, Krone B, Rostasy K et al. High seroprevalence of Epstein–Barr virus in children with multiple sclerosis. Neurology 67(11), 2063–2065 (2006).
  4. J Harley, et al. Transcription factors operate across disease loci, with EBNA2 implicated in immunity. Nature Genetics DOI: 10.1038/s41588-018-0102-3 (2018).