Got Vaccinated?

 

The COVID vaccine.  Today’s hot ticket.  It feels like trying to score concert tickets to a popular band.  Instead of purchasing concert tickets, we are desperately searching online to find an available vaccine appointment.  In New Jersey, Governor Phil Murphy put into place a vaccine registration website to notify residents when they can get vaccinated aligned with the CDC’S phased vaccine schedule.  Going into this portal, I entered my health information and then I was quickly registered.  Now the waiting game.

Based on my health condition and my medications, I am immunocompromised, and I take immunosuppressants.  About a month ago, I received notification from the New Jersey Department of Health that I could get vaccinated.  I started looking online to find a vaccine appointment.  What I found was there were no vaccine appointments to be had. And there’s lots of advice on Facebook on how to get an appointment such as by time of day and hitting the refresh button continuously on your screen until an appointment becomes available.

None of these strategies worked.  I continued to surf the web looking for available vaccination sites throughout New Jersey. Would I be willing to travel for an appointment?  How far would I be willing to travel for a vaccine?  It all started feeling a little desperate and a little ridiculous all at the same time.

One day, I noticed on the Atlantic County website that vaccine appointments would open up the next day at 6pm.  Atlantic County is one of  six mega sites in New Jersey where residents can get vaccinated. As I was finishing dinner, I logged into the website and was given a number in the queue to get an appointment.  I found out I my number in line was 6718 so I felt there was no way I would get an appointment.  A few minutes later, the website indicated there were approximately 8000 appointments available.  I stayed on the website, making sure my screen would not shut down.  I didn’t want to lose my place in the virtual line.  About 90 minutes later, it was my turn to make my appointment.  I couldn’t believe it!  I had an appointment for the COVID vaccine in 4 days.

That’s when PANIC and FEAR set in.  I had lots of questions rolling around in my head.  Is this vaccine safe?  Will I have a reaction?  Is this really okay with my doctor to take the vaccine?  Will my medications interfere with the effectiveness of the vaccine?  What did my rheumatology nurse say about the vaccine? But, then I saw Dr. Fauci on tv stating that if you can get the vaccine, you should take it.  That’s all I needed to hear.  In Fauci, I trust!  The anxiety was still there but I knew it was the right thing to do.

Saturday morning was here and I was on my way to Atlantic City to the Convention Center to get my vaccine.  The Convention Center vaccine mega site is operated and organized through Atlanticare Health System and the NJ National Guard.  I was impressed with the organization and the speed in which I was  processed through the vaccine appointment.  Before I knew it, I was vaccinated and sitting in an observation area waiting to schedule my next appointment.  Round 1 completed.

Now that I received the first dose of the vaccine, my next worry was the side effects.  As you watch the news and read articles, you learn there are a variety of symptoms after taking the vaccine.  Some mild symptoms to some very unpleasant symptoms.  Most people report they had no side effects after their first dose of the vaccine but the second dose is when you feel the side effects. 

After my first dose, my arm felt sore.  The next day, I woke up feeling sick.  I had a headache, body aches, fatigue and no appetite.  I rested in bed most of the day.  The next day, I was better.  But a few days after that, I had fatigue again.  I’m not sure if this was related to the vaccine or my “normal” symptoms.  Over a week after my first vaccine, I am feeling well.  However, I am concerned about any symptoms I may have after the 2^nd dose being that the 1^st dose was a little tricky.  In the scheme of things, while these side effects may be unpleasant, it is much better than having to battle COVID.

I’ll keep you posted in my next blog about how my 2^nd dose went.  I also share my reflections on vaccine access for all, including the senior citizen population.

What I Learned From My Whole 30 Journey

A few years ago, my daughter and I completed a round of Whole 30.  What is Whole 30?  It’s an eating plan developed by Dallas Hartwig and Melissa Hartwig Urban.  In this plan, you eliminate the most inflammatory foods for 30 days.  I thought this would be beneficial to me to see if eliminating these foods would result in an improvement of my psoriatic arthritis.

Here’s the link to the program rules:  https://whole30.com/downloads/official-whole30-program-rules.pdf  Essentially, you eliminate sugar, dairy, legumes, grains, alcohol, sulfites, soy, and msg. Also, you do not step on the scale for 30 days.  Eliminating all these foods was challenging.  But, it was really helpful to have my daughter as a buddy through this process because we would check in with each other almost every day for encouragement.

Did I feel better after the 30 days of clean eating?  Yes, I did.  I’ve always had issues with congestion, allergies, and colds that lead to sinus infections. I didn’t have any of those symptoms.  I also had more energy. That change was huge for me! Other than the change in feeling more energy, I didn’t really notice any changes in my arthritis symptoms.  However, I really like eating “clean” foods as much as possible.  This is a healthy lifestyle that has staying power with me.

Here are some of the things I learned from completing Whole 30:

I was addicted to sugar…big time!  The withdrawal was difficult with feeling cranky and jittery, hot flashes, and extreme fatigue.

I am sensitive to dairy and beans.  After completing the 30 days, I slowly introduced the foods I eliminated.  I noticed the congestion returned when I ate dairy.  I had very bad stomach pains after eating beans.  Now, I use either almond milk or coconut milk products instead of dairy.  I will eat ice cream from time to time without any problems but if I overdo it with the dairy, I notice it.  The same with beans.  I like hummus but only eat small amounts of it.

I craved oatmeal and rice during the 30 days.  When I reintroduced these items, I didn’t have any bad reactions.  These foods are a staple in my diet now but I fill up pretty quickly when I eat them.

I learned to read ingredient labels in everything I buy.  This was a real game changer.  There is a lot of junk in food items that you would think are healthy.  For example, you would suppose in a can of chicken broth the ingredients would be chicken, water, and vegetables. Instead you will find the following ingredients: chicken broth, salt, dextrose, chicken fat, MSG, hydrolyzed wheat gluten, natural flavors, autolyzed yeast extract, carrot juice concentrate, mono and diglycerides, xanthum gum, and onion juice concentrate.  Whoa!  That’s a lot of junk!  I challenge you to read the ingredients of your favorite food products.  It may make you change the way you shop.

I weigh myself weekly instead of daily.  One of the Whole 30 rules is to not step on the scale for 30 days.  It was liberating to stay away from the scale.  However, I did cheat in this area but through no fault of my own.  I had a few doctor’s appointments where my weight was checked.  It was good to know that I lost a few pounds but that wasn’t my sole focus in adopting this eating plan.

Whole 30 Tools:  Here are some resources that helped me stay dedicated to Whole 30

Whole 30 Day by Day:  This journal really helped me stay on track with completing the 30 days.  There’s a bit of daily wisdom from Melissa Urban along with a place to journal your feelings.  I needed that in the early days as I was withdrawing from sugar.  I highly recommend this book if you decide to adventure into Whole 30. https://whole30.com/daybyday/

Paleo Running Mama:  This is a great website by Michele Rosen with Paleo recipes.  However, she also features Whole 30 recipes.  Every recipe I try is a winner.  Follow her on Instagram for daily inspiration and new recipes. https://www.paleorunningmomma.com/

The Real Food Dieticians:  Dieticians Stacie Hassing and Jessica Beacom feature clean eating recipes but also include Whole 30 recipes.  All the recipes I’ve tried from this website are delicious and easy.https://therealfoodrds.com/

Clean Eating Magazine:  This magazine features recipes using clean ingredients.  Not all recipes are Whole 30.  However, their January/February 2019 and 2020 issues feature Whole 30. https://www.cleaneatingmag.com/

Whole 30 website:  This website offers plenty of resources and encouragement to complete a round of Whole 30 successfully. https://whole30.com/

While January begins the Whole 30 campaign to start the New Year off right, I didn’t really have it in me to start another round of Whole 30.  I think it’s living in our COVID world that has me feeling a little down.  I strayed from my mostly clean foods during the holiday season.  But, that’s what fun about the holidays.  All those wonderful treats to enjoy! With the new year, it’s time for renewal.   I am returning to eating the foods that make me feel good.   I receive emails from Whole 30 with inspiration and recipes to get back on track.  It’s just the motivation I need to eat right in order to feel my best. 

Why do I eat mostly whole foods and follow this plan?  Because living with a chronic illness like psoriatic arthritis, I want to do everything I can do to maintain good health.  This includes eating well, exercise, and maintaining a positive mindset.  I read the following quote on Twitter that really resonates with me.  “I may not be able to be as healthy as the next person but I can be as healthy as I can be.”

 

My Favorite Things

 

Feeling like I need an Oprah moment to share with you my favorite things that help manage the effects of living with spondylitis.  When I don’t feel well, I obsessively look online for items that will help relieve the pain and swelling in my joints.  My list below is some of my favorite tools to ease the pain. 

 ***Disclaimer:  The following items help me but you should talk with your doctor first about any treatment or item I am sharing.  I included links to these products but I am not a paid endorser…. just a gal who wants to share with the chronic illness community what I like best.

Sunbeam Heating Pad for Shoulder and Neck Relief:  I cannot live without this heating pad!  I use it every day.  It provides great relief to your aching neck and shoulders.  I also use this heating pad on my back every morning before I get out of bed.  This is one product I take with me when I travel because I don’t ever want to be without it.

I saw this item featured on QVC a few years ago.  I ended up buying it on Amazon for a lower price.  So, shop around!

https://www.sunbeam.com/pain-relief/heating-wraps/sunbeam-renue-neck-wrap-grey/700-825.html

Imak Compression Gloves and Socks:  When your hands and feet are swollen and painful, these arthritis gloves and socks are great.  They are like a gentle hug for your joints.  If they could make a bodysuit of their compression material, that would be great!   I’ve tried other brands but the level of compression can be too much for me.  Imak knows how to make just the right amount of compression without feeling too tight.

https://www.imakproducts.com/

Medterra CBD:  Shout out to Shawn for sharing this product line with me.  Medterra has a line of CBD products that I use when painful flares have got me down.  CBD Cooling Cream 250mg helps relieve my back and neck pain when it seems like nothing else will work.  When I have a flare that hits my whole body, I use their CBD tincture, 1000 mg.  What I like about the tincture is they include a dropper with measurements clearly printed on it.  I like to know exactly how much I’m taking.  Note:  Please talk to your doctor before trying CBD.  I discussed this with my Rheumatologist and had her review any interactions it may have with my medications.

https://medterracbd.com/

Dr. Teal’s Epsom Salts:  Dr. Teal, whoever you are, I love you!  Pour these Epsom salts into a hot bathtub and soak away.  These Epsom salts are infused with various essential oils.  They help soothe away your aches and pains.  They also leave your skin feeling very soft.  I usually buy this product at Target or Walmart.  Give them a try! 

https://www.drteals.com/products/

Heated Seats in my Suburu:  I never knew how much I would love my heated seats in my Suburu.  My husband and I like to take driving vacations, so we spend a lot of time in a car.  When I needed a new car, I wanted seats that would be comfortable for me.  Suburu seats felt good to me but included were heated seats.  When my back starts hurting during a day’s drive, I switch on the heated seat for some relief.  If you’re not in the market for a car and your seat is uncomfortable, search google for car seat cushions.  I’ve used them in the past and they provide quality support.   

Adagio Teas:  When I feel miserable, I am comforted by a good cup of tea.  Thank you to Katie for my Mother’s Day gift several years ago.  Adagio has a great selection of regular, decaf and herbal teas.  I have never been disappointed in the quality of their products.  Last year, my daughters Katie and Amanda bought me Adagio’s Advent Tea tree.  Each day in December was a new tea to try.  It was a delicious and thoughtful gift.

Dr. Pat's Hot Toddy:  And speaking of teas, there’s one more hack I’d like to share.  When all these treatments don’t seem to help or the arthritis flare seems to never get better, I retreat to the couch with a Hot Toddy. Be mindful of mixing alcohol with your medications.  It’s a nice drink especially on a winter’s night.

https://www.food.com/recipe/dr-pats-hot-toddy-cold-remedy-234344

My final tip:  If you are an Amazon shopper, www.smile.amazon.com is the place to go. A portion of your purchases is donated to your favorite charity.  I have mine set up to support my favorite organization, Spondylitis Association of America.

I hope you will find some of these hacks helpful.  What are your favorite things to relieve chronic pain?

 

 

From AS to PsA

 

 Credit:  http://hannahsinflammatorycomments.blogspot.com/2013/05/world-as-day.html

I’m still in denial about this…About a year ago, my rheumatologist changed my diagnosis from Ankylosing Spondylitis (AS) to Psoriatic Arthritis (PsA).  This was due to unexplained rashes and dactylitis in addition to my symptoms of joint pain, joint swelling, muscle pain, and fatigue.  Dactylitis is also known as “sausage toe.”  Doesn’t that sound attractive?

My Identity

With this change in diagnosis, I feel like I’ve lost my identity.  I used to be “AS” and now I’m “PsA.”  To me, it’s like saying my name is no longer Theresa; now it’s Trixie.  But wait a minute!  I liked Theresa!

Psoriatic Arthritis is an inflammatory arthritis that can develop along with skin psoriasis.  Psoriasis is a rash of red patches on the skin with white, flaky scales.  Most patients develop psoriasis first, then are later diagnosed with Psoriatic Arthritis.  However, this wasn’t the case with me.  I was diagnosed with Ankylosing Spondylitis in February 2012.  I remember about a year later, I had two red patches on the front of my legs, above the ankles.  This rash also had an area of white, flake scales.  I didn’t put the connection together.  About a year after that, I had an unexplained rash on both of my legs but didn’t have the white patches.  My rheumatologist sent me to a dermatologist for treatment.  The doctor gave me a prescription that eventually cleared up the rash.

A Family of Diseases

Ankylosing spondylitis and Psoriatic Arthritis belong to a family of inflammatory diseases called Spondyloarthritis (SpA).  SpA diseases include:

Axial Spondylitis: where the main symptom is back pain. 

Peripheral Spondyloarthritis:  inflammation in the joints and tendons outside of the spine.

Reactive Arthritis: joint pain and swelling triggered by an infection in another part of your body.

Enteropathic arthritis/spondylitis:  an inflammatory arthritis associated with inflammatory bowel disease (IBD), notably ulcerative colitis and Crohn’s disease.

Embrace my inner “Trixie”

I will say goodbye to Ankylosing Spondylitis and say hello to Psoriatic Arthritis.  It’s all essentially the same disease, just with a variation of symptoms.  Spondyloarthritis is the over-arching term for a family of associated diseases. Therefore, I still fit under the umbrella of spondyloarthritis.

This change in diagnosis makes me reflect on the fact that my disease is my identity.  Is this a good thing or a bad thing?  It’s good because it is a platform for me to advocate for arthritis.  Speaking out about this disease, advocating for legislative change, and writing a blog have been my proactive approach in learning how to manage and accept this disease.  I can’t help but wonder do I solely identify with a chronic illness?  Am I letting this take control of me instead of controlling it?

Here’s the reality.  Yes, I am controlled by this disease because each day I am faced with pain.  This disease is front and center in my life.  The tricky nature of inflammatory disease is some days you feel better than others.  It’s difficult to plan your life because you never know how you will feel each day.  This disease has also forced me to obtain disability benefits because I able to work only a few hours a week. So, sadly, the answer is yes. 

While that may sound depressing, I know in my heart I have a lot to be thankful for.  I have a wonderful family that supports and encourages me.  I work a few hours a week at a community college working with first generation students, which is a highly rewarding experience.  I enjoy staying physically active and I’m interested in health and wellness.  I am grateful for all these things and so much more.  While PsA is a defining part of my life, it’s not my whole life.

 

Contact Tracing Has Me Thinking!

 

The latest buzz phrase in this COVID-19 world is contact tracing.  According to Time.com “Contact tracing is a little like detective work: Trained staff interview people who have been diagnosed with a contagious disease to figure out who they may have recently been in contact with. Then, they go tell those people they may have been exposed, sometimes encouraging them to quarantine themselves to prevent spreading the disease any further.”  (https://time.com/5825140/what-is-contact-tracing-coronavirus/ 

My father was ahead of his time.  He was the ultimate contact tracer.  If he were alive today, he would have applied for the job.  Whenever my father got sick with a cold or some sort of virus, he would meticulously trace back to where he picked up his dreadful viral infection, not resting until he could find the cause of his misery.  When this whole pandemic came about, my brothers, sister, and I all had a good laugh about how my dad would want to trace this current contagion.

Contact tracing has me thinking: How did I get ankylosing spondylitis in the first place?  Where did this come from?  Why do I have it and no one else in my family has it?  Like father; like daughter.

I was taking a walk at my local park one day listening to the podcast “No End in Sight”.  In this podcast, Brianne Benness was interviewing Tema Smith, a woman with ankylosing spondylitis.  Brianne was asking her questions about if she was sick when she was a young girl.  Tema shared many strange medical issues as she was growing up but nothing so severe that it led to any investigation as a young girl. I was so engrossed with this interview because I connected to so much of what Tema was talking about. 

As a little girl, I was always sick with some sort of infection or virus.  I remember getting an infection, with a high fever, multiple doctor’s office visits, multiple lab tests, and rounds of antibiotics.  It would take me a good 10 days or more to start feeling better from whatever was making me sick.  If I recall, it also seemed to happen around the same time each year…maybe mid-winter.

I remember a consistent lack of energy.  Sometimes I was called lazy. It was just how I felt.  I didn’t have a lot of energy to do things.  I remember taking some disgusting liquid supplement that was supposed to boost my energy.  It was probably an iron supplement of some kind.  Also, I had aches in my joints at times.  My family shrugged it off as “growing pains.”  I have read and heard others with inflammatory arthritis say there is no such thing as growing pains.  Even the Mayo Clinic indicates “there is no evidence that growth hurts.” (https://www.mayoclinic.org/diseases-conditions/growing-pains/symptoms-causes/syc-20354349)

I just read a wonderful quote from Joyce Meyer that sums things up for me.  “We live life forward, but we understand it backward.”  This speaks to me in all areas of my life.  In terms of my chronic illness, it is interesting to reflect on my childhood illnesses and discover if there is a link to my present condition today.  But, it’s just a momentary thought.  I have a chronic inflammatory illness and I manage it the best way I can.  But still, the daughter of a doctor who was ahead of his time in terms of contact tracing, can’t help but look back and notice there must be some connection to being ill as a child and having ankylosing spondylitis as an adult.

Deciding to Continue My Biologic Therapy in a COVID19 World

How have you been staying well during this pandemic?  Have you had to make difficult decisions about keeping doctor’s appointments, treatments, and testing?  This new world has made even the simplest activities complex.

I was due for my Cimzia injection in April.  I was uncertain if I should keep my appointment or delay my treatment.  Being that I have been following my state’s stay at home order, it feels odd keeping appointments.  There is no clear answer how treatments for spondyloarthritis and other immune disorders react to COVID19.  So, there is much trepidation for me going out in public because I’ve stayed home to avoid this virus.  Another reason I felt nervous about going to the doctors’ office for my Cimzia injection because the doctor’s office is adjacent to a large University medical center.  I didn’t want to be anywhere near COVID19.

As I debated whether to get my Cimzia injection, I noticed on social media, immunocompromised patients posting pictures and blogs about getting their treatments, such as infusions.  Most felt safe receiving treatments and discussed the important protocols that were put in place for their safety.  Still, I was feeling apprehensive.  My husband felt I should delay treatment, if I was feeling well.  My daughter, a physician assistant, felt I shouldn’t wait too long because I could get a bad flare, which would be difficult to get out of.

In the meantime, I was feeling like I was getting a sore throat.  I was concerned that this could be the beginning of COVID19.   I managed to stay calm, treating my sore throat with Tylenol, drinking hot tea with honey, and taking Zinc.  The guidelines for taking biologics are you should be feeling in good health when you get the treatment.  If you were to take a treatment, and had an underlying infection, you could get very sick.  With that in mind, I called the doctor’s office to cancel my appointment for my Cimzia injection.

The sore throat passed.  I believe it was seasonal allergy related.  I continue to put off this injection because I didn’t think it was a good idea to be up in the area of the medical center where COVID19 patients are being treated.  I was feeling well and thought I would delay my treatment for a few weeks once the peak of infections had hit and things would be on the decline.

My body had other plans for me.  I woke up over the weekend with the beginnings of a flare.  I knew I couldn’t delay this appointment any longer.  I took care of myself as best as I could and called the doctor Monday morning to schedule my shot.

I felt nervous entering the office building where my doctor is located.  My husband drove me to my appointment, dropped me off at the curb, and I entered the building.  I had my mask on and hand sanitizer nearby.  There was a security guard that was screening every patient entering the building.  I went up to the 6^th floor of the building, checked in, got my shot, and left.  I did it!

My thoughts about whether to delay your treatment is to first contact your doctor to speak to him/her about your specific medication and illness.  Our doctors can help guide us when making these decisions.  This disease is not a one size fits all type of illness and treatment plans vary greatly from patient to patient.  But I keep thinking of the advice I get from my doctor about my medicines.  For me, if I feel well, I’ll continue my treatment plan.  If I don’t feel well, I’ll delay my treatment until I feel better.  That’s how I’m going to roll with this moving forward without fear or anxiety.

Keep Calm and Stay Home

https://unsplash.com/photos/LMwW0ARHc4o

These days were all doing the same thing:  shelter in place, self-quarantine, stay at home.  Whatever you choose to call it, we’re home.  All day, every day until this pandemic subsides.  How are you doing at home?

For me sheltering in place is my reality.  When you live with a chronic illness, like spondyloarthritis, there can be stretches of time when I am staying at home.  This is usually when I’m having an arthritis flare…an increase in my usual symptoms of back pain, joint pain, and fatigue.  In these times when I’m home, I’ve learned to stay content for the most part.  If my flare is severe, then I’m in bed, usually sleeping throughout the day.  With a moderate flare, I’m still in bed, but I can enjoy reading books, watching tv, surfing the web.  If I’m having a mild flare, then I can take a short walk around my neighborhood or practice some gentle yoga stretches.

When Governor Murphy put into place a stay at home order for New Jersey, I thought to myself…”I’ve got this!”  I’m used to staying home; how bad can this be?  Here are my strategies for staying sane while staying at home:

Have a purpose:  One thing I think about before I go to bed is what would I like to accomplish the next day.  By having a plan for each day, there is a reason and a purpose for me to get up and get going.  It could be cleaning an area of my house, organizing photographs, organizing important documents or any tasks that I have put off doing. By planning ahead, I have motivation to get out of bed each day.  

Have a regular routine: For me, one of the strategies that helps me cope with this is to have a regular routine.  I try to go to bed at the same time each night and wake up the same time each morning.  Even though, I have nowhere to go, I have a morning routine that includes breakfast, clean up the kitchen, read from my bible or devotional, get showered and dressed, and then work on whatever goal I’ve set for the day. 

Stick to my Yoga practice : I attend yoga classes two days a week at the YMCA.  Now that it is closed, the “Y” has posted my yoga classes on Youtube.  It is really assuring and soothing to hear and see my yoga teacher.  During these times, I had moments where I feel anxious.  I acknowledge the moment, let it pass, and get back to what I was doing.    Practicing yoga and meditation has taught me this concept of acknowledging a thought and then let it go.

It’s Spring!  Get Outside!:    One positive aspect of staying home is the beautiful spring weather we’ve been enjoying.  It’s lovely to go outside in the sunshine, take a walk around my neighborhood, and begin preparing our gardens and planting beds.  Open the windows in your home and let the fresh air in.

I have never had an episode of illness where I was home for three weeks and counting. Even this, is something that I must adjust to with all my experience being home.  I stay connected to my family through phone calls and Facetime.  I have weekly video meetings with my coworkers.  I stay connected to the students I advise and tutor.  Still, it’s not the same as meeting face-to-face.  However, this will have to do for now. 

Stay Healthy!  Stay Safe!