“Woahhhhh, we’re halfway there. Woahhhhh, livin’ on a prayer!”
Officially 20 weeks pregnant. Halfway to our due date. Which also means: A pinterest board overflowing with ideas. Apps on my phone telling me the baby’s comparison to a fruit size along with other helpful hints and information. Pictures of the ultrasound framed along with our first picture when the baby was just an embryo…a prayer.
Our journey started with a wish, followed by a prayer, an abundance of positive thoughts, and my own personal team of Avengers.
In my past blog post “Everything worthwhile is Uphill” I ended by sharing how I was assembling what I like to think of as my team of Avengers, my own team of heroes. My Avengers didn’t include Thor, Hulk, or Iron Man though. Instead, I had assembled my Rheumatologist, RMANJ fertility doctor, high risk doctor, and my fertility nurse. Then, to head my support system of Avengers I did have the same leader, my very own Captain America, my husband (my teammate). Which is now pretty fitting with the Avengers: Endgame movie currently climbing the box office records charts. (No worries. No Spoilers here!)
With my Avengers in place we were ready to start infertility treatments. At Reproductive Medicine Associates of New Jersey (RMANJ) they take an individualized approach to their fertility treatments. They view infertility as not a one size fits all treatment clinic which I found to be reassuring and helped with knowing that our plan is what will set us on the road towards parenthood.
We did several fertility tests to get the full scope of which treatment plan was right for us. Our plan was to begin the Intrauterine insemination (IUI) process. There are several different types of IUI in order of least to most aggressive; IUI with no medication, Timed intercourse with medication, IUI with ovulation induction and IUI with Superovulation. The decision was made that we would go aggressive to start with a Superovulation IUI cycle and do a double insemination.
You might be thinking, “What the heck does that mean!?” And I do not blame you. We were thinking the same thing. In layman’s terms it means that I would be taking injectable medications to help stimulate the growth of more than one egg to increase the chances. Nightly injections were followed by morning visits for blood work to monitor my hormone levels and ultrasounds to check the growth and stimulation of my eggs. Every morning visit was followed later in the day with my nurse calling to give that night’s instructions on how much medicine to inject and how far along we were looking. After the 10th day my eggs were at the ideal size with stimulation and I was instructed to give myself the “trigger shot” which ultimately tells my body to start ovulating and release those eggs!
We went into the office back to back mornings for insemination to increase our chances. During both those visits sperm cells were put directly into my uterus using a catheter, so that the sperm starts its swimming closer to the egg. If you ever saw the movie “Look Who’s Talking” with the beginning scene of the sperms racing towards the egg, then this is exactly what I was thinking was immediately happening afterwards. If you never saw the movie or need a mind refresher…watch that video! Chris thought I deserved a reward so he made a balloon out of the latex gloves, hence that is what I am holding in the picture. Once you leave the office then the wait begins…
Two weeks later and the results were in. There I was, sweating it out, nervous, like a kid waiting to go into the principals office. Were we pregnant? Did IUI work? or Would I be heading into another cycle? Another month of RA pain and another month of trying to get pregnant. The call came in, and the words “I’m sorry” came across the phone and punched me straight in the gut. It was upsetting news for sure. I came home from work to post-it notes hidden throughout the house from Chris and a little sunshine of flowers to help boost my positive spirits again. It was back to the drawing board with my Avengers to see where our next path will lead us in our journey to become parents.
Shortly following the news of the failed IUI cycle, I had a flare up with my rheumatoid arthritis in my hands and wrists. I was back on a taper of prednisone to help with relief of inflamed joints and inflammation. We were planning on entering into a second cycle of IUI, but with another flare up and possibility of having to do a second laparoscopic surgery for the endometrioma cyst that came back from my first surgery the plan was altered. We were going to head right into an In Vitro Fertilization (IVF) cycle. However, first it had to be cleared by insurance. While we waited for the clearance from insurance, I was put on birth control in order to halt my menstrual cycle so we would not miss this month’s possible cycle. It did feel a little backwards, going on birth control, when you are trying to get pregnant. But, doctor’s orders and he is the boss! Insurance dictates how many cycles of IUI you have to do first before you are allowed or considered to do IVF. With our insurance we are supposed to do 2 rounds of IUI first. After reviewing my medical background and history, insurance was able to waive the second IUI and we were ready to go with the green light for an IVF cycle.
Finally we got the go ahead from the team (Insurance, RMANJ, Rheumatologist). This also meant a whole slew of new information which included: financial paperwork, consent forms, more medications for treatment, course enrollments for online learning, timelines, risks, procedure process and many emotions and feelings to top it off. This could easily be overwhelming. Chris and I decided to take each step in stride and create fun letter boards throughout the process to make a scrapbook in the end to show our future son or daughter. We were staying positive. That was our #1 way of thinking moving forward.
Day 1. The start to prepare for retrieval day! Injections and medicine have all been delivered. Our fridge was stocked. I had morning monitoring for blood work and an ultrasound. As I was giving blood, the song “In My Blood” by Shawn Mendes was playing. I couldn’t help but chuckle and share with Bill, my favorite phlebotomist there, because by now we have become buddies. Not only was it quite humorous. The lyrics could not have been more accurate. Giving up is not in my blood and just like that I thought, IVF let’s do this. That afternoon we got the call from our nurse and our instructions for injections for the next four nights.
Day 5. Routine continued. Morning monitoring followed by instructions for medicine. In the midst of these days I had another flare up. I was scared to go on prednisone. I did not want anything to interfere or be a possible reason for why the cycle was unsuccessful. But, I had no choice. My flare up began to get worse and my doctors aka Avengers agreed that it was best for me to go back on a taper of prednisone. I also began seeing an acupuncturist regularly. Research and studies showed the effectiveness with acupuncture alleviating stress, enhancing overall health and improving outcomes with infertility along with helping chronic pain management. So I was fully on board and embraced my visits and thus added a new member to my Avengers.
A year since we made our first wish to become parents arrived. We could not be more thankful and blessed to have shared our Thanksgiving in our home with our family. We ended the evening with our nightly shots and continuing on our path to make our wish, our prayer come true.
The following mornings were closely monitored to see my egg progression. I was doing well with giving myself the injections nightly since I was used to giving myself injections from my Rheumatoid Arthritis medicine I was on for the past 16 years prior to going off of it to become pregnant. That was definitely one silver lining. However, my arms definitely saw the brunt of giving blood every morning.
Day 12. After a total of 36 shots and 7 morning monitorings, the decision to “pull the trigger” was made. This shot is a single hormonal injection that helps in the eggs final development. During the preparation for retrieval your body definitely changes. Hormones are all over the place with the medication and your ovaries are being stimulated trying to produce as many eggs as possible. More eggs means more possibilities.
Day 14. RETRIEVAL DAY! Prior to going in we made our guesses to how many eggs we thought the doctor was going to retrieve. Come on now, there had to be some competition thrown in here given mine and Chris’s competitive nature. My guess was 11 and Chris guessed 27. The way retrieval works is that I am placed under “twilight anesthesia” (a medicated induced sleep). From there the doctor, using an ultrasound to guide him, inserts a thin needle attached to a catheter through the vaginal wall to draw out the eggs, one by one, from the follicles using light suction. (Insert the ant song but change the lyrics to “the eggs go marching one by one hoorah! hoorah!”) When the procedure is over, I head back to my recovery area where Chris was waiting for me. We then learned that lucky number 13 was the amount of eggs that were retrieved. (That is right I won the guessing competition!)
The next day when our nurse called to check on me and give me my next instructions, she gave us an update on our eggs. We retrieved 13 eggs, but 12 of them were only mature enough to inject with sperm. Out of the 12 that were injected, 11 of them became fertilized. The next part was that we had to wait a week to see how many made it to the next phase called blastocyst. When the results came in we were told that 4 have survived. Each blastocyst is then graded by an embryologist based on cell development with a number and 2 letter grades. It is the RMA policy to transfer the best quality embryo.
We then decided to have our embryos go through a comprehensive chromosomal screening (CCS). This comes with an additional cost, but looking back it was worth every penny. CCS is a technique that allows scientists to evaluate and detect chromosomal errors. This advanced embryo selection technique will not only prevent specific conditions such as Down Syndrome, but also dramatically reduce miscarriage rates and reduce the need to implant multiple embryos to achieve conception. Two weeks later our CCS results discovered that 2 out of our 4 embryos came back normal. It turned out that our 2 “highest graded” embryos were abnormal which meant that if we did not elect to do the testing those embryos would have been the first 2 embryos that would have been chosen for our transfer. Which ultimately would have ended with 2 failed transfers or miscarriages and definitely having to go through the cycle more than 2 times. Through doing the testing we improved our chances knowing that we now have 2 healthy embryos. 2 embryos that made our living on a prayer continue.
We were now ready to move ahead with preparing for the transfer. Which meant new types of shots! These were progesterone in oil shots and were given intramuscularly into the butt. Warming up the oil beforehand definitely was key! This continued up to the day of our transfer, the day that felt like Christmas morning when you were a little kid. A day we have been anxiously awaiting.
January 9th, 2019. Transfer Day. Channeling every possible positive vibe that we could and strength from my Wonder Woman superhero powers. Check out the video to see a glimpse into our car ride there!
The whole actual transfer procedure only takes about 15 minutes, but science just blew me away with how in that time period it was making our prayers come true. Yes, only positive thinking was allowed. We were becoming pregnant until proven otherwise. Before the transfer we opted to do laser acupuncture that would be done pre and post transfer. Again, an additional cost, but studies showed that the acupuncture increased your chances by 4-6% so YES SIGN US UP! Plus we got to wear cool Men in Black sunglasses.
We were placed in a private room that played relaxing music to create a stress free environment. Shortly after acupuncture the embryologist and doctor came in with our embryo, our prayer. The doctor then placed a catheter into my uterus and we watched on the monitor as he transferred the embryo right into the perfect spot for implantation. The process had us both smiling from ear to ear. Our embryo, our prayer, our baby has now found a new home.
We were pregnant until proven otherwise. The wait was 9 days until I would get blood work and we would find out for sure, but until then I had to continue with the progesterone shots in the butt and I did every old wives tale possible that helped with implantation and the embryo “sticking”. As soon as we left the facility we stopped and had McDonalds French Fries and then for dinner more greasy food! Stick baby stick! Brazilian Nuts. Pineapple Core. Pomegranate Juice. All were facts? myths? who knows. But I read they worked so I was doing them. We even came home and watched Wonder Woman to give our embryo that extra strength! As the days went by I didn’t have any “symptoms” that made me feel pregnant. We just kept saying we were having a baby to one another and then the 9th day came…
I went for blood work in the morning and I let my nurse know not to call me until 3 pm when I would be home with Chris. We wanted to share the phone call together. 3 pm came and my phone started to ring. My heart was beating a mile a minute. We answered the phone and…
All the positive thinking, old wives tales, strength worked! We were officially pregnant. For the next 4 weeks after, I continued injecting the progesterone butt shots to make sure to create a balanced environment for the now growing baby. I went back for blood work several times to check my beta levels, each time making sure they continuing to rise. Rising numbers meant positive news. February 15th. We officially graduated from the Fertility clinic! We were now placed fully in the hands of our high risk doctor and ob-gynecologist. It was an amazing feeling.
“More than 1 in 8 couples – over seven million Americans – will have trouble getting pregnant,” according to MERCK Pharmaceutical Company. Although infertility is a common medical condition, it is an extremely emotional and difficult experience for couples, often leaving them feeling confused, isolated and alone. I remember walking in or leaving morning monitoring passing other females. Each one with their own personal journey and story. I always thought to myself how our stories might be all different, but we all had one common prayer, to become pregnant. I always made sure to smile at everyone. For you didn’t know if it was their first time ever coming to morning monitoring or they have seen several failed attempts and have been coming for months or years.
For anyone reading this and going through infertility, you are not alone. Reach out. Lean on others. I highly recommend the book “Hilariously Infertile” by Karen Jeffries. The book puts a comical spin on infertility to help make you laugh. Support is so important. I could not imagine being on this path without my Captain America, my Avengers, family and friends who have all been that support system that made me have the continued strength to stay positive.
For anyone that knows of someone who is going through the process. Be their support. Check in with them. Distract them. Be their positive light, their extra smile.
This blog might not relate to you at all. But I do thank you for taking your time to read our journey. Although you might not be trying to have a baby or know someone who is, I hope you can cling on to the thought of how positive thinking can go a long way. There are so many different situations where it is much easier to be pessimistic and think negatively. Thinking this way is not moving in the right direction to improve, succeed, reach a goal, be happy, overcome adversity, an obstacle or unexpected bad news. Change your mindset by trying my Unfortunately, Fortunately trick, take one step at a time, and also know who your own set of Avengers are to help you along the way.
I share our journey in hope that it helps others to be positive. The countless amount of days battling through rheumatoid arthritis flare ups with being off medicine, laparoscopic surgery to remove endometrioma cysts, leaning on RMANJ to guide us with the fertility path for us. All have been a fight worth fighting which has brought us to the point where we are now. Halfway there. Living on a prayer. All while continuing to SLAY RA!
Happy New Year everyone! As I kick off 2020 I look back on my first 2019 blog post (check out link here) that ended with the following outlook:
“You can look at the year in review and think about how the past or present was your friend or enemy. The year was your friend during the times you laughed so hard you started to cry. Your friend when you took as many snapchat videos, selfies or pictures so you can rave about. Your friend when you were having quality moments. The year was your enemy when you were experiencing pain. Your enemy when you endured a tragedy or news that deeply saddened you or someone within your support system. Your enemy when times were tough. 2019 is where the strangers lie. The strangers will be new experiences, new endeavors, new hardships, new obstacles, new beginnings, new adventures, etc. Remember you have support systems that will be with you as you navigate the strangers and know that each stranger will soon be a new “friend” or a new “enemy”. Take risks. Believe. Hope.”
As I navigated 2019 I certainly ran into new strangers that soon became either a friend or an enemy. One thing that remained constant though was my support system and my consistency to believe and hope.
Today marks a day where my husband and I believed and hoped the most. Today marks mine and my husband’s “Transferiversary” or “Transferversary”. Yes that is a term used in the infertility journey. January 9th last year marked the day we had our transfer. Transfer day is the last part of the In Vitro Fertilization (IVF) process. We watched as the embryologist and doctor implanted our embryo. The spot where we told our embryo, “Welcome to your new home”!
We later found out that our embryo listened and made a home in my belly for the next 9 months. Our transfer was a success. We were pregnant and today we get to celebrate our “Transferiversary” with our baby girl, Teagan Kimberly. It is amazing what a year a difference can make.
We decided to name our daughter Teagan Kimberly. Teagan, a name that both my husband and I fell in love with after matching on the name in a baby app. Yes, there is actually an app for that. You swipe left if you do not like the name and right if you like the name. If you and your partner both swipe right to like the name the app tells you that you have matched. Teagan was one of them! Kimberly, after my husband’s mother, our beautiful angel in heaven.
However, for the fun of it, I took one of those silly pop up games on Facebook after seeing a friend post theirs. I know they are generated, but I can’t help but smile at the one that came up for our little Cup of Tea (a nickname that my husband calls her). Teagan has already shown her triumphant ways for sure.
For starters, during the IVF process she was one of two embryos that made it to the final phase to be able to be transferred. That was her first triumph!
9 months later, her second obstacle and triumph occurred. Her delivery day. Her due date was September 27th, 2019. She wanted to be early (A trait she must get from me. I hate being late.) The morning of September 25th, while trying to scrapbook, my water broke. I decided to wait it out and ended up checking into the hospital that evening. Contractions started to come on heavily and I got my epidural just in time for the Big Brother Finale. (You know you need to watch shows live to prevent spoilers. Plus it was a great distraction at the time.) While I watched the finale, the nurses and doctor kept coming in to change my position. After doing this several times, I was then hooked up to oxygen. I was told that the oxygen was not for me, but this helped our baby to receive more oxygen. Then the changing of my position continued. It was not until both the nurse and doctor came in together with more serious faces that we knew something was up.
Every time I was having a contraction, the baby’s heart rate would drop. The changing of positions was in hope that it would change her position and help with keeping her heart rate balanced. Instead, her heart rate continued to drop. I went from relaxed (as much as you can be while in labor) to Chris changing into scrubs and preparing me for an emergency cesarean section. Before I knew it, we were in the operating room and all I wanted was to hear the sound of a healthy baby cry. The medication was making me nauseous and causing me to pass out. I remember paying close attention to the music playing faintly in the background to help keep myself alert as much as possible. “Truth Hurts”, by Lizzo was the song that was playing. Lizzo is known for her unapologetic self confidence and unbridled positivity. I thought to myself if this is the song our baby is coming out to, I knew she was already a rockstar in my book. Sure enough at 12:19 am, September 26th, 2019 a cry was heard in the operating room. A cry that struck instant tears of happiness and pure joy in mine and my husband’s eyes.
Turns out the fetal distress was due to the umbilical cord being around her neck. Every time I was having a contraction, the umbilical cord got tighter. This caused her to not receive adequate oxygen making her heart rate drop. I later came to find out that she did not take her first breath on her own right away either. Her first cry was not until they brought her to the table to help her. A little fighter from the beginning, coming out triumphant again.
Coincidental that the Big Brother Finale was the same night. If you are a fan you know what I am talking about. If you are not, well bear with me. One of the key phrases of the show is “expect the unexpected”. In other words, things do not always go as you plan. In fact in the pregnancy books I read for my summer reading, any part that had to do with c-sections, I just skipped over. The hospital classes my husband and I took. Yup, totally tuned out during the c-section parts. Thought no way, no how I was going to have one. A C-Section was not part of my plan. But Bam. The unexpected happened and we could not be more thankful that day for medical technology that helped our little girl be born and to keep me healthy as well.
2019 a year of hoping, believing and understanding that things do not always go as planned. Yet here in 2020 my husband and I are able to celebrate our transferiversary. A day, a year ago, where hope and believing was what we embraced.
So what friends and enemies did you encounter in 2019? What were the times you laughed so hard your stomach hurt or you had a moment that you will cherish for a lifetime? What were the times you would rather forget or were struck with sadness and grief? Some of these times are planned while some are not. You can let them consume you or hope and believe that “your plan” will work out even better in the end. You too can be celebrating a year from now a plan that went a different way then you intended.
If you are currently going through infertility, hope and believe that 2020 will bring you your baby boy or girl. If you are experiencing pain, hope and believe that 2020 will bring you joy. If you feel like their is one obstacle after another to hurdle, hope and believe that 2020 will be a year where you clear them and come out victorious. I hope and believe that a year from today you look back at “your plan” and smile just like my husband and I are smiling today. Remember, it is amazing what a year a difference can make.
In 2020 I hope you…..
AND MOST IMPORTANTLY SLAY! 🙂
Friends. Family. Friends of Friends. Charitable Strangers. The more the merrier. Save the date. Join my team. Put it on the calendar. No excuses. I better see you there on December 7th!
EVEN BIGGER NEWS. This year I am so beyond excited to announce that The Arthritis Foundation has asked me to be this year’s…
Last year I was overwhelmingly surprised by friends and family who came out for the run and donated to the Arthritis Foundation. Last year without social media or advertising (due to having to keep the run a secret from me) my team raised over $3,500. Check out my blog post all about the day: Me Everyday: SLAY, Me in December: SLEIGH
This year I am shooting for the $5,000 mark as a team and I know we can do it!
I have been honored to be selected as the 2019 Jingle Bell Run Adult Honoree this year and could not be more excited to represent the Arthritis Foundation with this title.
For those of you who do not know me or know my background. I was diagnosed with rheumatoid arthritis right before my 18th birthday. Later on I was also diagnosed with mild lupus. Living life with both autoimmune diseases, I made the promise to myself to never let them define me, but to be stronger than them both!
The Arthritis Foundation’s mission is “boldly pursuing a cure for America’s #1 cause of disability while championing the fight against arthritis with life-changing resources, science, advocacy and community connections.”
Let’s together raise money for the Arthritis Foundation to hope one day to see a cure!
Click the Link: TO JOIN MY TEAM! Once you are there click the “Join Our Team” button.
To see my honoree story featured on the Arthritis Foundation page: CLICK HERE!
I can’t wait to see everyone on December 7th! Thanks ahead of time for helping me…
Slay (OR SLEIGH) RA!
2018 is a wrap and last night we counted down to enter into 2019. I want to take this time to reflect and highlight a day in December that was both a big surprise and a day beyond special. Let’s rewind several months…
Sometime in September my husband, Chris, told me that his Air National Guard Unit was having a “Holiday Ruck and Run” which included a 5k ruck and a 5k run. As soon as he told me, I was all about signing up. I love to run and the added challenge of a ruck made it much more enticing. For those who do not know what a ruck is, it is a military term used for a weighted bag that carries your military equipment that can range from 30-50 pounds. Rucking is when you carry the bag from one location to another. Rucking is the foundation of Special Forces training and requires strength and endurance, both which have been a struggle for me being off medication for 13 months now. Nonetheless, one of my top promises I made to myself was to not let Rheumatoid Arthritis (RA) be in control. EVEN on my hardest days and EVEN when this is easier said than done.
December 1st was the date and we put the “Holiday Ruck and Run” on our calendar. September and October went by and I didn’t think of the run. November we were celebrating our 1 year anniversary as husband and wife. We decided
to celebrate by going back to Cape May where we got married and retrace the steps from our wedding weekend. We brought up the fact that we need to start training with the rucks and that the “Holiday Ruck and Run” was indeed a holiday theme so we of course needed to dress up. I did not think twice, I love a good costume so I jumped right on board with the idea. We came to the conclusion we were going to be Santa and Rudolph and if we were going to do it right we needed to make a sleigh. Looking back, boy did I fall into that trap.
When the week before the run arrived, the run was actually the furthest thing that was on my mind. Chris and I were preparing for the retrieval process of our In Vitro Fertilization (IVF) cycle. Every day brought something new, from shots and pills, to morning monitoring, ultrasounds, and daily calls with the nurse. The Wednesday before the run was retrieval day. We were excited, anxious but overall staying positive. Keeping pictures, tracking and making different letter boards throughout the days was our way to make the process fun and uplifting. Thursday and Friday after the retrieval I was feeling okay as far as post surgery side effects were concerned, but my joints in my hands, feet and shoulders were flaring from my RA and the ruck and run was Saturday.
The night before the ruck and run we got our outfits for Santa and Rudolph all ready and had Christmas music blasting to get us in the spirit to make an epic cardboard sled. To help with my flare ups I started a low dose taper of prednisone. Prednisone is a corticosteroid and reacts with the immune system to provide relief to inflamed parts of the body. I am not a fan of taking prednisone due to the long list of side effects, but wanted to ensure that I would be okay for the ruck and run in the morning.
December 1st I woke up thinking I was heading to do a Holiday Ruck and
Run with my husband. (Boy was I in for a surprise) We packed the jeep with the sled and we were on our way. As we were pulling into the parking lot I thought I saw a familiar face in the crowd, but brushed it off. However, when I looked again I realized that the crowd that was standing in front of us were all familiar faces. I knew each and every single face that was standing there. They were faces of our friends and family. I was instantly confused. Why were my friends and family at a military ruck and run? When I looked even closer, they all had the same shirts on that read “Sleigh RA with Tray”. Then the pieces all started to fall into place.
We were not at a “Holiday Ruck and Run” for the Air National Guard Unit. Instead we were at the Jingle Bell 5k Run that helps raise money for the Arthritis Foundation. The moment I realized the surprise, I was instantly filled with so much gratitude. While on the inside I was completely overwhelmed, on the outside (once I got over the tears of joy) I had a smile from ear to ear. I had the largest team that raised close to $4,000 and they did so without posting on social media. They had to be completely secretive in order to keep the day a
surprise. The idea started with my best friend Lindsey who then spearheaded and organized the team. I was blown away.
Seeing my friends and family with the same shirts, buttons with my “Slay RA with Tray” logo and purple Santa hats meant more than words can describe. This surprise could not have been more perfect timing with remaining to stay positive during the Fertility treatments and with balancing my RA flares on a day to day basis. The day was filled with laughter, good times and memories I will cherish. My friends and family ran and showed their support that day for a cause I know oh so well. For a cause I only hope one day to see a cure for. Today I did not SLAY RA, but instead my team SLEIGHED RA! My support system is a constant reminder of how blessed I am and a constant reminder to help me continue to “SLEIGH” RA.
2019 Brings a new year. 2018 Becomes the past. You can look at the year in review and think how the past or present was your friend or enemy. The year was your friend during the times you laughed so hard you started to cry. Your friend when you took as many snapchat videos, selfies or pictures so you can rave about. Your friend when you were having quality moments. The year was your enemy when you were experiencing pain. Your enemy when you endured a tragedy or news that deeply saddened you or someone within your support system. Your enemy when times were tough. 2019 is where the strangers lie. The strangers will be new experiences, new endeavors, new hardships, new obstacles, new beginnings, new adventures, etc. Remember you have support systems that will be with you as you navigate the strangers and know that each stranger will soon be a new “friend” or a new “enemy”. Take risks. Believe. Hope. And most importantly remember to SLAY or “Sleigh”!
Wishing everyone a happy and healthy New Year!
Another big thank you to everyone who organized and donated to my team,
I am beyond grateful!
SO it has been a while since my last blog. Summer has come and gone, but it has left a quote, this blog’s title, that has become my personal mantra. A quote that has provided inspiration, motivation and encouragement through a summer that challenged me physically and emotionally.
Summer 2018 for me was very different from the past couple summers. The last two summers I spent training for the New York City Marathon. I had a set routine and training plan. I woke up before sunrise (or else I was fighting the summer heat and humidity) and ran the amount of miles I needed for the day (anywhere from 5-21 miles). If I wasn’t running, I was off to the gym for strength training. This
summer, however, I woke up with unpredictability; not knowing where my pain would be and how long it will take to get to a feeling of normalcy. Pain, inflammation, lack of mobility… Every morning I felt them in some way. Some mornings were better than others, but other mornings I couldn’t even stand. In order for me to walk anywhere I would need assistance from my husband (Chris) or brace myself against furniture. On the mornings I could walk my hands and wrists wouldn’t function normally. This made simple tasks such as brushing my teeth or putting my hair up impossible. These days weren’t even the worst. The absolute worst days came when the inflammation, pain, lack of mobility took over my entire body. I couldn’t walk. I couldn’t put my hair up. I couldn’t open a door. My body was overcome with a pulsing, radiating, pain. Even just sitting somewhere or laying down felt like punishment. I didn’t want to go to bed at the end of the day. My flare ups were the worst in the morning. Going to bed meant I was one step closer to waking up. One step closer to even more pain.
It was in August, while I was in Texas for the Keller Williams Real Estate Mega Agent Camp when I first heard the 4 words that I now hold on to. I
was privileged to be in the audience for John Maxwell’s keynote speech. I have read several books by him, but hearing him speak in person felt as if he was speaking directly to me.
“Everything worthwhile is uphill.” ~ John Maxwell
“Everything worthwhile is uphill. Everything in your life, everything in my life worthwhile, it’s all uphill.” These were the words John Maxwell repeated and said so meaningfully. He continued his talk with the following key points. If you have a good relationship, it is all uphill, you have to work at it. If you have a business, it is all uphill, you have to work at it. Whatever you do. If you have a dream in life, it is all uphill. You have to work at it. No
one accidentally goes uphill. You have never heard of someone that is extremely successful being interviewed and when they are asked how they have become successful say, “I have no idea. I just woke up and here I am.” Everything in life is uphill and the problem is we have uphill hopes and downhill habits. It’s impossible, not improbable, to go uphill with downhill habits. A downhill habit is something like no effort. No intentionality. No discipline. No strength. No hope. No positivity. You can’t have downhill habits, downhill thinking if you want to go uphill!
Downhill habits and downhill thinking is not an option that I give myself. August 2018 is when I first heard this quote, but we need to rewind to November 2017 where my uphill climb began. This was when I stopped my medication for my Rheumatoid Arthritis and Lupus. Medication that I have been on since I was 18; that is 15 years the medicine has helped
me control these diseases. I stopped medication because my husband and I want to start a family. The medication I was on was not safe if we wanted to become pregnant.
Every morning the climb continued and then in May, I found myself in the emergency room with stomach pains where I soon discovered I had endometriosis and 2 endometrioma cysts on
my left ovary. A little hiccup in our journey to start a family. I underwent laparoscopic surgery to get the cysts removed. After healing, we got the thumbs up to start trying again, but my flare ups got worse through the summer and my rheumatologist suggested that we see a fertility specialist.
July 20th was our first meeting at Reproductive Medicine Associates of New Jersey (RMANJ). I was extremely nervous. I did not know how the doctor was going to react because from everything I have heard is that you had to be trying for at least a year before starting this step. However,
after the doctor looked over all my past history and reports, the first words out of his mouth were, “RA, Lupus, Endometriosis. You have a full plate huh? I am so happy you are here. You both made the best decision.” Looking back at this moment brings tears to my eyes. I know now, more that I did on that initial day, that our fertility doctor was more than accurate with his words.
We began the fertility tests to get a full scope and what exactly our next step of action
would be. In between tests is when I had my trip to Texas. This is when I first heard those 4 words, “Everything worthwhile is uphill”. Four words that resonated within me. It was also while I was in Texas, when I began to have the same stomach pains that I experienced back in May. I ended up going to the emergency room to find out that my endometrioma cysts have come back. Being away from home was also challenging to try and avoid flare ups. I packed items to help alleviate any onset while also trying to be prepared like the Boy Scout motto. But I guess since I never really was a boy scout,
the start of a flare up began. From Texas, my trip was not stopping. I had an extended vacation planned with meeting up with my husband and friends. So, I quickly called my rheumatologist. To help while I was away, my doctor put me on a high dosage, quick taper of prednisone. Prednisone was my giant band-aid that helped me power through and enjoy so many laughs, new adventures, and unforgettable memories. All throughout the trip the quote “Everything worthwhile is uphill”, kept ringing through my ears.
When we got back to New Jersey our uphill climb was continuing. We were finishing
tests and I was assembling what I like to think of as my team of Avengers, my own team of heroes. My Avengers didn’t include Thor, Hulk, or Iron Man though. Instead, I had assembled my Rheumatologist, RMANJ fertility doctor, high risk doctor, and my fertility nurse. Then, to head my team of Avengers I did have the same leader, my very own Captain America, my husband. My team of Avengers helped me through the end of the summer while I pressed on to make my trek uphill.
Through endless amounts of blood work to the point my veins probably thought they were pin cushions by the end, urine samples, ultrasounds, fallopian tube tests
(Hysterosalpingogram), genetic testing, and constant communication between all of my Avengers, a decision was made that we will be starting the Intrauterine insemination (IUI) process. Before we begin this process, I have been tapering off another round of prednisone and beginning a new medicine called Imuran that is safe for pregnancy. Trying to get my RA under control is a big step in my uphill climb. Only time will tell if the new medicine will work.
“Everything worthwhile is uphill.” Four words that I will continue to hold on to. Four words that I will continue to believe in. Four words that I want you to think of when something in your life is not going according as planned or not as easy as you thought it would be. Think of these four words when you want to achieve a goal that seems out of reach. Remember you can’t go uphill with downhill habits. Stay positive. Stay having strength. Stay having hope. Most importantly, keep making your way uphill!
I have Avengers now. Heroes in my corner. I will continue to make my way uphill, because I know this journey I am on is all worthwhile!
AVENGERS ASSEMBLE. SLAY RA.
Friday, June 13, 2014. I was sitting in traffic on the New Jersey Garden State Parkway
on my commute home from work. Anyone who lives in New Jersey knows once Memorial Day hits, Friday rush hour gets even worse than it already is, with people trying to hit the Jersey Shore for the weekend. So there I was stuck, traffic was a at a dead halt and all I wanted was to get home. In that moment I came up with a strategy, a game in a way, to turn any negative situation into something positive. A strategy/game (STRATEGAME) that I like to call “Unfortunately, Fortunately.” UNFORTUNATELY I was stuck in traffic, FORTUNATELY I only had 5 more days of school until it was summer and I was blasting Pandora summer 90’s hits. This instantly put me in a better mood! Could you imagine yourself in a similar situation, wouldn’t that put YOU in a better mood?
Unfortunately/Fortunately became a strategame that I started to implement from that moment on with friends and family. I would use this in all different types of situations: work, health, road trips, giving advice, and even just for fun. Unfortunately, a bird just flew by and your head became the prime target for him relieving himself. Fortunately, this is supposed to be good luck right? Just wash it off and hope that good luck is around the corner! A strategame that anyone and everyone can apply and use throughout their day.
I started with this in 2014, but unfortunately/fortunately really has been beneficial more so in the past couple months with having to be off medicine. I have seen a lot more bad days than good days. A lot more days where my mornings start off with slowly having to put my feet on the floor and easing into daily routines, fighting through pain and joints that do not want to function right away. This can easily start a downward spiral of emotions. I read other blogs and posts from community groups that I am in for Rheumatoid Arthritis and Lupus where people are giving up and giving in to the disease. It pains me to see posts like “I can’t handle the pain. That’s it RA you win! I give up” or “Trying to fight a battle when there is no cure is like going into a war zone knowing you are already going to lose.” I respond to these posts in hope to shed light, in hope to turn these unfortunately moments into fortunately outlooks. If you change your mindset then your behavior, outlook and mental attitude changes as well. Here is how I have put unfortunately/fortunately to practice.
Unfortunately, being on the medicine that has helped keep my RA under control is not an option when wanting to start a family. Fortunately, it has led me to see a new doctor where I gained more knowledge. You hear the saying “if it is not broke, don’t fix it.” When I was on medicine I felt I was not broken, I had my RA under pretty good control. However, quickly after stopping my routine needle that I took, my symptoms returned and there was now a need for a fix. I researched and found the Hospital of Special Surgery which has been among the top-ranked hospitals for rheumatology for 26 consecutive years. In the past I did not have to worry about how this disease could effect me while being off medicine and in the future with wanting to become pregnant. These are all issues that I discussed with my new doctor. He decided to do a more comprehensive exam with blood work. One part was a cardiolipin antibody test which are antibodies that form in response to cardiolipins which is a kind of fat in the blood. The levels of these antibodies are often high in people with abnormal blood clotting and autoimmune diseases like lupus. With further testing we determined that I have a strand of lupus as well which would need to be closely monitored during pregnancy. My fortunately mindset here lead me to research a new doctor which has put me on a path for a better understanding of my autoimmune diseases.
Unfortunately, out of every 100,000 people, 41 are diagnosed with RA every year and
about 1.3 million Americans have RA with no set cure. Fortunately, I have started this blog that led me to connect with people around the world whom I would have never known. I have been incredibly touched by the many people who have reached out to me through comments and messages. Talking to others who can relate is an experience I never thought of until I started my blog. I have connected with people all over the United States and in other countries across the world. When I started my blog adventure, I did not know what to expect. Here I was thinking my blog was a way to keep myself accountable when I was doing the elimination diet and an avenue to share awareness about the disease. Connecting with others is truly inspiring and I have
found myself becoming a huge cheerleader for others that want to be on the mission to slay RA as well.
Unfortunately, it has been 16 years since I was diagnosed with Rheumatoid Arthritis, fortunately I have been blessed with a strong support system. I have stayed positive and battled tough mornings, hospital visits and flare ups all with the support of my husband, family and friends. There was an article I read that relates an iceberg to RA and chronic illnesses. You only see the tip of the iceberg on the surface and what is under water (the majority) is left unseen to someone looking from above sea level. The Tip of the Iceberg (what is seen) – Deformities in the joints. Those really close to the person see the physical difficulties in the morning with trying to do routine tasks with limited mobility. What is under the surface is invisible to everyone, but the person who has the illness. I am fortunate to be surrounded by people who see the part of the iceberg that is submerged and give me the support to turn my bad days into brighter days with keeping a smile on my face.
Unfortunately/fortunately goes hand in hand with my all time favorite saying, “Everything happens for a reason”. For every unfortunately, there is a fortunately, a reason why. Unfortunately, I am coming to the end of this blog post. Fortunately, I am leaving you with a fun strategame to try out yourself. I CHALLENGE everyone next time they are in a bad mood or thinking negatively to play the strategame with themselves. Think of that fortunately that goes along with your unfortunately. Believe me it works! So until next blog I fortunately will continue to…
Ever since I was a little girl, I was always a New York Mets fan. I have so many memories going to Shea stadium and in 1986 (only 2 years old), I was there celebrating their World Series win!
A New York Mets season for a fan is a roller coaster just like it is for someone with an autoimmune disease like myself. Myself/The Mets have their good days and then their bad days. Inconsistent, but it is about how you handle the whole ride of the roller coaster. You can’t just enjoy the ride when it’s on the high part.
The beginning of this season, the Mets started off with a bang. The Mets were re-energized and started the season with a 9-1 record. They surpassed the 1985 and 2006 teams for the best start in franchise history. The team had a celebration that they introduced this season. They called it the “Salt and Pepper.” The players on the Mets would motion to one another like they were grinding a salt and pepper shaker. A hit, a run, homerun, rbi; all lead the team to grind it out with the salt and pepper shaker motion. Winning and celebrating always helps with keeping smiles on everyone’s faces. However, a season is 162 games and throughout the season there are injuries, errors, and slumps. It is how you continue to “keep grinding” along the way, never giving up. You need to find out how to bounce back, make adjustments that are needed and get back in the batter’s box.
The past 75 days were my “keep grinding” days as I navigated through the elimination diet. I figured out what types of food were and were not triggers. I made the needed adjustments to my diet and got back in “the batter’s box” to learn more. Before diving into the highlight reel, let’s recap from past blogs. I was diagnosed with Rheumatoid Arthritis when I was 18 years old (almost 16 years ago). In November I stopped all medications, including a needle that I took regularly that helped manage my RA, in hope that my husband and I would be blessed with a family. Quickly after I stopped medicine, symptoms of my RA began unraveling with fatigue and flare ups with inflammation and immobility in the morning that lingered throughout the day. This soon became my new “normal”. I turned to an elimination diet to see if I can find some source to alleviate the symptoms.
The reintroduction phase consisted of testing a food and then documenting any reactions. When testing a food, I ate that type of food for 2-3 times a day for three days in a row. I basically was telling my body YES keep the food in my diet OR NO keep it out. My husband and I kept to a very strict schedule and food prep was a must! Throughout the entire process I received questions. 75 days completed and ready to give some official answers.
How did I know if a food was a NO?
This was a question I was struggling with in the beginning. Was I going to really see a difference? Was there going to be food that even played an impact? Then certain foods were reintroduced and I saw changes in the way my body responded, both RA related and non RA related. Some signs were more obvious than others. Some I had to experiment with further, but signs were apparent and I did find triggers. The main sign I noticed was when the pain from inflamed joints that I wouldn’t normally feel before, became more apparent.
What foods did I find were triggers?
– Nightshade Vegetables – Common nightshades include white (but not sweet) potatoes, eggplant, tomatoes, and peppers. The list of edible nightshade plants also includes any spices made from peppers, like paprika, red pepper flakes, and cayenne pepper (black pepper is not included). I found with nightshades that my results were inconsistent. I found my body said NO when I combined different nightshades together or when my meals consisted of primarily nightshades. My body also said NO when I ate any of the nightshade vegetable family raw. When nightshades were cooked or eaten sparingly I seemed to have a better response.
– Peanuts – Before I even started the elimination diet I used to think my body reacted differently after eating peanut butter, but was never positive. With the elimination diet process I was able to see that within a half hour after eating peanut butter, I noticed a notable difference. My stomach would feel bloated. It was clear my body had a food intolerance to peanut butter. After doing research, I found this was common. Peanuts, despite the name, is actually a legume and not a nut. Legumes contain phytic acid and lectins which make it harder for your gut to break down and process. I also discovered from several doctor articles that people who have autoimmune diseases should stay clear from peanuts due to the stress it already puts on the gut and immune system. Interesting. Since this realization, I have turned to peanut alternatives such as cashew and almond butter instead!
– Chocolate – In an earlier blog, I noted that when I first reintroduced chocolate, it was a week of my stomach hating me with digestive issues. This battle between my stomach and chocolate thank goodness went away and I have been okay with chocolate since. This is a big sigh of relief because this girl loves her chocolate!
Gluten is a general name for the proteins found in wheat, rye, barley and triticale – a cross between wheat and rye. Gluten helps foods maintain their shape, acting as a glue that holds food together. Read more at Celiac Disease Foundation
– Gluten – The last type of solid food that was reintroduced. I slowly added gluten back into my diet, one component at a time. I started with rolled oats which for the most part are gluten free, there is still controversy that they might be contaminated with wheat. Nonetheless, I found no change here. I moved on to rye where I still saw no significant change in my symptoms. It was when I reintroduced wheat where I noticed I found a trigger. The morning after I reintroduced wheat, I had a higher level of inflammation, pain in joints that are not my “normal” flare up joints. I knew for sure that moving forward I was not including wheat. Hello quinoa, brown rice pasta and gluten free alternatives. Surprisingly we found a gluten free pizza dough at Whole Foods and it was better than regular dough we have used before! My side had regular cheese and my husband’s had buffalo mozzarella because he is allergic to cow’s milk. Bon Appetit!
– Alcohol and Caffeine – Last but not least I reintroduced alcohol and then caffeine. It was a celebration of 75 days. Completion of the diet. We celebrated by going out to eat and for our first alcohol we used the wine my bridesmaids got us at my bridal shower. We filled our glasses and said cheers to good health and a lifetime of adventures together as a team. My first coffee just happened to have the Mets logo on it which I felt fitting since I have been grinding through the elimination diet and with my RA. Alcohol was not a significant trigger. In fact there are mixed studies (as long as it is gluten free) about whether or not alcohol plays a role with RA. Alcohol I am going to continue to monitor and stay gluten free with. Coffee. Whoa not having caffeine for 75 days and then drinking a large from DD sure will get you going. My students at 7:30 in the morning had a very energized teacher that day. As for my RA, I found regular coffee I did not have a problem with. However, when I got the flavored swirls I had the same responses with extra inflammation and pain.
Was the elimination diet worth it?
Absolutely. I needed to find ways to get back in the batter’s box now that I was without medication. When you are an active person and a disease is trying to bench you, you are willing to see if there are other practices you can do. For me the diet was about finding possible triggers that would allow me to keep grinding. For my husband, he did the elimination diet to support me, my coach. While I was being overly critical of tapping into whether a food was a yes or no, Chris saw the diet from a different perspective as my coach. He saw my overall performance. He noticed that our healthy diet brought us more energy and had less lethargic days. In the end the diet provided me with more knowledge than I did before I started.
What are my main takeaways from completing the elimination diet?
Physical Strength is defined as a state of health that allows a person to do daily tasks. Physical strength is generated through muscles, the skeleton, tendons and ligaments all working together. The amount of physical strength you have depends on how well they interact with one another. In my case my physical strength has been inconsistent and I was not sure how my joints were going to interact with my other parts of my body Saturday morning of the Asbury Park Half Marathon. Getting to the starting line was the easy part, but to finish I knew it was going to have to take more than just physical strength this time around.
I have ran a half marathon in the past and 2 New York City full marathons. BUT, this one was different. For the first time I was going to run a half marathon without meds. On top of being off meds, the run was happening in the morning. This is when I experience the most pain with inflammation, flares and having difficulty to fully function.
In order to best prepare, the night before, Chris and I made sure to have a hearty pasta dinner (all compliant to the elimination diet, so it was brown rice pasta). The morning of the run I woke up extra early to make sure I got in a lot of stretching, ate breakfast and tried to ease into my morning stiffness and pain as much as I could before it was go time. I could not help but feel excited as I put on my Racing for a Cure jersey and bracelet. I completed my running apparel with a compilation of Wonder Woman paraphernalia that included earrings, a bandanna and my leggings that I also wore in my first New York City Marathon. I definitely looked like I meant business.
We got to the starting line and waited with our friend Brian aka “Dude” who was also running the half marathon. I was all smiles on the outside and ready to go, but would be completely lying if I did not mention what was going through my head on the inside. I was nervous. I am definitely my own worst enemy; both literally and figuratively. Literally -my body attacks itself as part of my autoimmune disease. Figuratively – I am very hard on myself if I do not achieve a goal or meet my own expectations. Ultimately I did not want them both to collide. I was fearful that my body was going to interfere with my goal of finishing.
PHYSICAL STRENGTH. What brought me to the starting line. The 13.1 miles between the start and the finish was much more than physical strength though. SUPPORT. We
were so lucky to have friends and family who came to the run to help cheer us on along the way. Their cheers, the signs they made and seeing their smiling faces were all so rewarding to help carry us through the next part of the run. Thanks to them we have some great pictures and videos of us running together as well. RACING FOR A CURE. Another huge thank you to everyone who donated. Everyone who donated were my extra motivators to keep me moving forward (my extra spoons) and I thought of you every step along the way. . It meant so much to me that you took the time to donate to a
cause where scientists are studying all forms of arthritis which includes osteoarthritis, lupus, rheumatoid arthritis, juvenile arthritis, gout, ankylosing spondylitis and psoriatic arthritis. As I ran I thought about all the many people I was running for that also hope and pray to see a cure one day. MY HUSBAND. Who was right there next to me every step along the way. Even though he hates long distance running, he ran the run to support me and I could not be more proud.
SUPPORT, RACING FOR A CURE, and my HUSBAND were all big factors that helped me from mile point to mile point on the course. These were all part of my MENTAL TOUGHNESS that guided me to the finish line. There was a part of the course that challenged me the hardest. This part was on the older section of the boardwalk. The boards were uneven and my feet had to work extra hard to grip the boards. This is where I felt the pain kick in. My feet felt like they were throbbing through my sneakers. Over and over I kept thinking about my friends, family, racing for a cure, my husband next to me. My joints did not care about what I was thinking though. My toes felt like they were cracking with pain every time they stepped down onto the uneven boards. I knew
though I was finishing no matter what. When we hit mile 12 and only had 1.1 miles to go, we were at the home stretch. Fighting through the pain, I was all smiles and focused. For the last mile, I knew this was my husband’s longest run he has done so far. I kept saying out loud positive and motivational words. “We got this!” “Every step is one step closer to the finish and we did it together!” There even was a guy on his balcony blasting out of two huge speakers Rocky theme music. So naturally I started pumping my fist and singing along, “It’s the eye of the tiger. It’s the thrill of the fight. Rising up to the challenge of our rival.” (I might have just cheated now and google searched the lyrics. Anyone who knows me I am the worst at lyrics and I definitely made up my own words the day of the run besides the eye of the tiger part.) It was not long until we saw the finish line, the crowd screaming, the cheers of our friends again. Chris and I crossed the finish line holding hands up in the air. WE DID IT! WE FINISHED TOGETHER!
As soon as we finished, I felt an overwhelming feeling of emotion rush over me. For the
first time after a run I felt my eyes swell up with tears. I knew that my time was nowhere near my best, something that mattered to me at first. BUT, what mattered the most and what mattered at that instant was I finished. I finished with my husband by my side, with not being on medication, Racing for a Cure and had my friends and family there who cheered us on! I almost did not share this on my blog. It is extremely hard for me to be vulnerable and show moments of weakness. BUT looking back at it and reflecting on this moment, it was not weakness. At that moment, the medal around my neck meant more to me than just a medal. It meant my mental toughness was greater than my physical strength. (Not to mention Chris also realized the medal has a multiple use of a bottle opener.)
That night we enjoyed a rewarding post marathon steak dinner. Corn was the next food group we had to reintroduce to the elimination diet that day. We picked up some fresh corn and enjoyed a side of corn on the cob. Dinner hit the spot! Just like we ran through the finish line of the half marathon together, we are coming up to the last stretch of finishing the elimination diet. The last food groups include soy, eggs, dairy, yeast, gluten and wheat. These are key food groups that can possibly cause triggers. I am definitely curious to see if my body responds any differently to them and if I come to any realizations. Stay tuned for next blog where I focus on crossing the finish line with the elimination diet. Looking forward to answering questions such as was the elimination diet (ED) worth it? What did I learn and take away from doing the ED? Were there any triggers? What I would recommend to others? So many questions and with every answer or knowledge I come across is one step closer to……..
Woohoo! Hit 50 days since starting my blog and being on the elimination diet. Anytime I get a chance to throw math into the mix, I definitely will. That’s the math teacher in me! Last blog I promised a more detailed break down of how the diet is going, so on day 50 I present you the RUNDOWN- with the diet and my upcoming half marathon!
RECAP – The elimination diet is not a diet about carbs, calories or how much you eat. The elimination diet is a 70-80 day process which starts with a detoxification (phase 1), followed by phase 2 which is a neutral phase and ends with the reintroduction phase (phase 3), where you slowly add back foods to see the relationship your body has with them. See my blog post on 3 P’s: Planning, Prepping and Phase 1 for more information about phase 1. WHY am I doing this again? 3 main reasons. 1) My support system who always advised me about other avenues that might be beneficial with autoimmune diseases. 2) Wanting to share my experience with others who live a life with a chronic illness and 3) The BIG reason. My husband and I hope to be blessed with a family one day. The safest decision was to stop all medications. Shortly after stopping medicine, all of the symptoms of RA quickly showed up. I had to try anything that might possibly help, give me some sort of relief or provide me with some insight. Check out Why I chose to do the “Elimination Diet”if you missed it to read the full reasons.
The reintroduction phase has been an interesting process. When you reintroduce foods, you are testing foods that may trigger a reaction. My main goal was to see if any foods trigger a flare up of increase inflammation, pain and stiffness. However, there are many obstacles to RA and other variables that come into play. This is my first time being off medication in 15 years, so my body is definitely adjusting. Weather in New Jersey lately has been the furthest from consistent which can play a part as well. New Jersey saw Nor’easter after Nor’easter with weather temperatures being in the 80’s one day to back in the 40’s the next. Flares come in two varieties: “predictable” and “unpredictable”. “Predictable” flares have a known trigger such as food, overexertion, stress or infection. “Unpredictable” flares are when flares occur but there is uncertainty to why they are present. After all a part of RA is that your body’s immune system attacks itself and inflames the protective membrane inside the joints. This is what I have been battling with while trying to play detective; is it the the trigger food, another precursor or is it an “unpredictable” flare? All questions that I continuously ask myself.
There are 19 different types of foods that get reintroduced. Foods that usually do not cause much of a reaction get reintroduced first and they increase with more intolerable foods as the process continues. So far I have done 12 of them. In order they have been citrus, nightshade vegetables, beef, pork, sesame, walnuts/pecans, almonds, cashews, peanuts, the rest of the nut family, sugar, and chocolate. Each item had its own limitations and specificity. I discussed the first four foods in previous blogs. The recent items have been sesame, nuts, sugar and chocolate. The only foods I saw a noticeable change with were peanuts and chocolate. The morning after I introduced peanuts to my diet, I had a brand new flare up in both my knees. That morning I could not bend either of my knees. I continued with the peanuts and the next morning my knees did not experience the same flare up. I did experience stomach cramps and bloating with the peanuts that I was not experiencing before though. With the inconsistent results, I decided to remove peanuts from my diet for now and try to reintroduce it at a later time to see if I get the same results. I live for chocolate and was really looking forward to reintroducing it. The chocolate tasted so smooth and delicious but my stomach didn’t have the same thoughts on the subject, as I experienced grumbling and pains for the first couple of days. It certainly was not a happy welcome back party whatsoever. My stomach took all 3 days to allow it to be tolerable again in my system. I did not notice any change though as far as flare ups are concerned, which is my main goal for the diet. The more high risk food items that are more concerning are coming up and I am curious to see how and if they will affect me.
Check out our Jerseys that came in the mail this past week! We are beyond excited to wear them. Wearing this jersey on Saturday has so many different meanings and emotions for me. I know I am not going to be running this run to get a personal record. Not being able to run at my best kills the competitor inside of me. However, putting this jersey on means I am STILL in charge of my disease. Training has certainly been difficult. Every step I run I feel pain. I googled search to try and see how many steps I would be taking during the half marathon. How many steps will I be showing RA who is boss! It stated around 10,000 steps for 5 miles. I thought, “yes! a math problem!” In fact myself and my co-teacher, Mr. D, just got done teaching this same concept. So I opened up a notepad and did the math. About 26,200 steps. It was not the steps that shocked me, but the quote that was on the random page I turned to in order to do the math. HOW BEYOND PERFECT!
I have a dream that one day Autoimmune diseases will have a cure. I am up for the challenge (yes this is the competitor in me back at it). I will continue to run miles to chase my dream; no matter how painful, frustrating, and/or tiresome the fight may be. My shadow is a constant reminder and motivator of the dream that I am chasing. I love that I get to share these miles with another shadow, my husband. I want to personally thank everyone who donates that is helping me chase my dream. With every donation I get a personal letter mailed to me letting me know that you are supporting myself along with the 50 million other Americans who suffer from autoimmune diseases. Like I mentioned in my past blog, you will be my extra spoons on Saturday. Every step of the 26,200 steps that I take, I will be thinking of the support you have given me.
Three days left and below are three special girls (my nieces and God daughters that I simply adore) that sent me this supportive picture. They are right! I GOT THIS! Saturday I will continue to #SlayRA!
“It’s like 10,000 spoons, when all you need is a knife.” ~ Alanis Morissette
Alanis might only have needed a knife in her song “Ironic”, but what I recently found out is that 10,000 spoons is a person with an autoimmune disease and chronic illness’s dream. I recently came across the term “Spoonie” when describing a person who has an autoimmune disease/chronic illness. Within my almost 16 years of being diagnosed with Rheumatoid Arthritis (RA), I never heard this term ever used until recently. I have mentioned in past blog posts that I am pursuing being an ambassador for the Arthritis Foundation and became a crew member for the National Arthritis Research Foundation. Through this recent journey I kept seeing the term “Spoonie” pop up. The only type of spoonie I thought of was cuddling and I thought to myself, well I do like to cuddle. BUT why am I being classified as a “Spoonie” in reference to my RA?
After a simple google search of “what is a spoonie”, I came across what is known as the Spoon Theory by Christine Miserandino. Christine’s best friend asked her what it feels like to be sick. This is a question I get often as well, especially more recently. It really is so hard to truly explain the fatigue, the pain, the inflammation, the daily challenges and really do so in a way that you are understood. It is hard to explain to someone that Rheumatoid Arthritis is not the same thing as arthritis that you get as you get older. Christine, in the “Spoon Theory” explains in a way by using spoons. A healthy person, especially if you are young, starts their day with an unlimited amount of spoons; endless possibilities to do whatever you desire. When you have an autoimmune disease you have to know how many spoons you are starting the day with. Each task, even sometimes the smallest of tasks, costs a spoon. You have to plan out your day so that you do not run out of spoons. Christine goes into great detail, making her friend play out a day as if she had a certain amount of spoons to use like she does everyday. For the full spoon theory check out the following website. Spoon Theory’s full story
It is Christine’s last paragraph that completely hit home.
“Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.”
Ever since I went off medicine (read my other blog posts to find out why I went off medicine if you do not already know), my number of spoons varies day by day. I still have not been able to fully grasp how many spoons I have to start with and I definitely miss the freedom of not having to count “spoons”. I have the hardest time slowing down and trying not to do everything. I am incredibly guilty when it comes to that. I have a hard time because I made a promise to myself to never let RA keep me from doing something that I want to do. Lately, my RA has really been testing me especially when it comes to trying to train and prepare for running my first half marathon off medicine.
Last Saturday, I signed up to run a 5k to raise money for a Cure for Blood Cancers. My two friends started a team for the run in memory of their father. This was going to be the first time I would be running in the morning in a long time since mornings are the most difficult for me. This morning was no different. I was having difficulty walking and really had no clue how I was going to run. When I got to the run, I was so excited to see everyone on the team that it really took my mind off of the pain that I was feeling. Right before we were about to start the run I was introduced to Governor Murphy and his wife who were also there to run and raise awareness. It was such a breath of fresh air to see how down to earth they both were as well as upbeat and positive. I ended up running with the both of them the whole time which completely distracted me. They did not know this the day of the run, but I would like to give a special thank you to Governor Murphy and Mrs. Murphy for making my first morning run in a while a success! My RA certainly tried to test me this morning. I might have used a majority of my spoons before noon even hit, but I could not get a smile off my face because I stuck to my promise.
I did not have as much success a couple days later. I was on my Spring break this week from teaching and I decided to do some heavy spring cleaning around our house. I spent the day deep cleaning the bathrooms, kitchen and the rest of the house along with reorganizing our closet. After spending the day going non stop, I decided to do a long run with Chris when he got home from work. We were running ten miles, something that was not new to me since I have trained for marathons in the past. We had our route planned out and we set out to start our run. Around mile 8, is when I realized I was running out of spoons. My feet felt as if they were throbbing out of my shoes and with every step the pain was getting more intense. We were running down the road leaving Cattus Island Park when I felt the road appearing more and more narrow. I ran out of spoons and the pain caused me to come to a halt. I begged Chris to continue on. I knew the route and knew he had a mile loop before we would meet again. We would then have one more mile to make it home.
While I walked to the spot where we would meet again, I was a roller coaster of emotions. I was frustrated that I had to stop, angry at myself for not planning out my spoons better, and at the same time proud that my husband was doing awesome on his longest run to date. I kept beating myself up while I waited at the meeting spot. Anger. Frustration. Disappointment. This was when I knew I had to dig deep to find that reserve spoon. I was not going to finish by walking home. I was determined to finish the run on a positive note. I told my RA and my body, “Sorry, not sorry. I am not letting you win.” We ran the mile home. This was the first time I got to the point where I had to use my reserve spoon. I know I need to listen to my body better now and I am still learning. This is definitely a huge learning curve for me, but I will not let RA win.
Today marks 12 days until our half marathon. I know I have not been training anywhere close to how I have for past runs. I know beating my PR is a long shot. I know that every day is different and I know my spoon count changes daily. I know it will be my longest run being off medicine. I know that mornings are the most difficult for my feet to function. I have so many I knows that seem to stack up against me. HOWEVER, my biggest I knows put them to rest. I KNOW that I signed up to run the race in support of the Arthritis National Research Foundation. All money donated will go to funding arthritis research to find new treatments and cures for rheumatoid arthritis, lupus, juvenile arthritis, ankylosing spondylitis, psoriatic arthritis and other autoimmune diseases. I KNOW that I made a promise to myself to never let RA interfere with what I want to accomplish and I will keep that promise to myself. Last but not least, I KNOW that no matter how many spoons I wake up with that morning, I will be sure to dig deep for that reserve spoon and finish. Alanis Morissette had 10,000 spoons and all she needed was a knife. Well Alanis, I have that one knife (a sword to be exact) and I am determined to Slay RA with it. Now isn’t that ironic? Don’t you think?!
The link below is my fundraising page. Thank you so much in advance for donating. There is no donation amount that is too small. I am beyond appreciative and will run with each of you as one of my extra spoons on the day of the run.
Stay tuned for my elimination diet progress.