Yes…But

One thing that came up the last time I put my fingers to the keyboard was this issue of doubt. I decided to write a blog post about it so I could delve a little deeper into that feeling. Am I doubting my RA diagnosis? I am not sure. I could clearly see with my own eyes that my bloodwork came back a year ago with elevated numbers for rheumatoid factor and then for anti-CCP. Those along with bilateral joint pain led to my diagnosis. But there is still part of me that lingers in the area of doubt.  Is this really what I have? Do I really have THIS chronic disease?

I can only assume that this may be my grief with having a chronic illness. Grief comes in stages and although I have not lost a loved one in this case, I have lost something. Maybe the life plan of living a healthy life for the rest of my life. I can say, that knowing other chronic illnesses, this is not a completely awful one, but does one really want any chronic illness? I should think not. It’s not like Chronic Wealth Syndrome is out there floating around somewhere.  No one at the Rheumatologist is in the waiting room hoping for Chronic Badassery. Therefore, is this small feeling of doubt then, really just grief for the healthy person I thought I would be? It’s hard to say.

I know in my soul that I do not doubt the wisdom of modern medicine. I know that I can go to the lab and get my blood drawn from a tiny needle, no matter how big it looks to me, and the blood will then go to a different lab where tests will be run and those results will then be sent to my patient portal and visible to my eyes, just a few days later. I also know that there is nothing in me that can argue with the results when they stare back at me in black and white and I stare at them. But… I still cannot quiet the doubt.

So, what is causing the doubt? I think it is the fact that my flares, although “classic” are not easily classified as “classic” after further inquiry. Yes, I have swelling, but not all around the joints. Last flare, I only swelled on the underside of my finger joint. This is worth noting as pictures I see have swelling all over the joints and especially on the top of the knuckle. Yes, my knuckle was red. But was it red due to the flare, or something else? Yes, I presented with a fever, but I never checked it with a thermometer, only relied on my Fitbit temperature read-out. So, did I in fact have a fever? Yes, I had an increase in stiffness, but was the stiffness due to RA or something else? These questions were and are flying through my head even as I type this blog post. This is frustrating and I am trying to figure out how I can quiet these doubts.

So, what is my solution? I hope to talk with my Rheumatologist about these doubts and see if these are normal feelings. Also, I am an evidence-based person and I know that I would feel better if I can see more clear-cut answers that say, without a doubt, you have RA. I am hoping that maybe he will agree to an ultrasound on my hands so I can see if my synovium on my finger joints is being affected. That will be clear cut and no denying it. We shall see…

Shame?

When I envision my future post-diagnosis, it looks a bit different. I know I will need to stick to a low stress lifestyle. I mean, who shouldn’t, right? But it really is a trigger for flares for me. I know that I will always have to move my body everyday, as movement really does help the stiffness and pain. What I do not know is what my body will look like.

Rheumatoid arthritis is a chronic disease and a progressive one. This means that I will have this disease for the rest of my life, and it WILL progress. As my doctor likes to say, “Treatment for RA is not going along the same speed as the disease. It will not halt the disease; it is just to slow the progression.” I take this as, even though I take DMARDs (methotrexate and hydroxychloroquine) the disease will still progress, hopefully at a slower rate. Knowing this, what does this mean for the outward appearance of my hands or even the functionality of them? That is unclear.

I can say that over the past year, I have paid attention to other people’s hands both in the real world, and in the world of fiction, albeit books, movies, or television. One thing I have noticed is that in some fictional worlds, the characters that are shown to be evil (think the witch from the classic Snow White) or ugly and old (think Mal’s character from Descendants 3 after she gets spelled) they have one thing in common… their hands.

Their hands have larger than normal knuckles and even nodules on them. In other works of fiction, some even write about how some characters have bent or twisted fingers, but the tone is that this is not something that people desire. Now, don’t get me wrong, I do not want that either. However, for this depiction to be the depiction of the “bad character” of what happens when one gets spelled, this makes me think of how, if someone were to have larger than normal knuckles, nodules, twisted or bent fingers, they would feel shame and may even want to hide them.

 I even read about a real-life woman who was going to her son’s wedding, and she wanted to look very nice, obviously, but didn’t want to show her hands, so, the suggestion was to wear gloves. This surprised and saddened me. I initially was surprised that she felt the need to hide them, but then I remembered all the visuals we have either in print or in film, where the characters with different hands are not good characters. That then saddened me as I felt that this woman shouldn’t feel the need to hide her hands. So what if they look different?

I can honestly admit that I have shed tears over the thought that my hands will look different. Isn’t that silly? I, at the time, was not thinking of the possible pain, or possible inability to move my fingers, but just the aesthetic quality of my hands. As I was blubbering about the beauty of my potential future hands, my mother said something that has stuck with me. I know I know, “mothers are always right” (except when they are not) but this time, she was. She said that when she sees someone whose hands look different, she sees someone with a story to tell.

That statement was a paradigm shift. I no longer thought about the beauty of my hands and how, due to the disease, will change. I think about other issues involved with the change. I think about how they will function, how they will feel. Will I be able to grasp objects? Will the morning stiffness subside? Will they be painful? Those are the thoughts that are in my head about my hands. I no longer feel shame and you shouldn’t either. Now, if only I can remind myself of these thoughts the next time I see a character with different hands…

A Year in Review

As my rheumatoid diagnosis anniversary rolls around, I wanted to do a year in review. I have had a total of three flares now. One was near the holidays, which I have shared. One was just a few months ago. That flare was awful. I remember it clearly. I woke up and it felt as though my hands were in concrete. They were so stiff I could barely make a fist. It felt as though the rest of my body was going at normal speed but for some reason, my hands decided that they were fine with going sloth speed. This, of course, was not conducive to my normal life.

The flare began on a Saturday, which is note-worthy since my doctor’s office is closed on Saturday. Hence, your girl could not get the needed steroids and had to figure out how to power through all the inflammation. Alexa, play Alicia Keys “This Girl is on Fire”. Luckily, my child is always willing to lend me a helping hand or two. So, when I discovered the refrigerator was just a task that I could not handle, literally, they were there to open it for me. 

I am not sure if I have mentioned this before, but one of the frustrating things about this diagnosis for me is that I have lost my independence in everyday tasks. Most of the time I can still do everything I was able to do before the diagnosis and symptoms came about. However, there are sometimes, like when flaring, I just simply cannot do what I am used to doing for myself. I am extremely thankful to have the help of my husband and daughter and the resources online to help me feel supported and teach me the knowledge of some helpful tools. Did you know there were electric can openers? They are a godsend! Have you learned the belt around the refrigerator trick? Thanks world wide web! You live, you learn, and, you can keep the Luv’s, just share with others who may be going through it as well. 

When I need to ask for help, I do. Don’t get me wrong.  Sometimes it’s begrudgingly on the inside, but I try to smile on the outside as I want to set a good example to my child that it is always ok to ask for help.

The third flare was, strangely enough, almost exactly a year after diagnosis. I noticed that my knuckle was red and warm. The swelling came next, followed by a fever. These are the “classic” signs of a flare, and I knew I had to contact my doctor for steroids. Luckily, it was not the weekend yet! So, as I was video calling my doctor, I was able to communicate my symptoms and a script was sent to the pharmacy. This time, the flare reached my feet as well. And even as I type this, although my hands have recovered, my feet have seen better days.

I also had my year in review appointment not too long ago with my Rheumatologist. A few months back, he said that although most patients need x-rays every 3 years, I would need them yearly. This was due to both of us noticing that one of my fingers has already been bending. I would say it could more accurately be described as shifting. My finger looks as if half of it is trying to permanently drift to the other fingers as if it needs a little support. “My name is Forefinger and I have RA!” “Hi, Forefinger!” As a result, yearly x-rays are now needed.

Luckily, it did not take long to get the x-ray results. Oddly enough, after having this disease for a year and doing my annual check in with my Rheumy, there is a little part of me that still believes that this diagnosis is a mistake. I know what you are thinking. I have all the classic signs and have had 3 flares, clearly it is not. I can’t deny, however, the small part of me that believes this, and therefore I was anxious to see if there would be changes on my x-rays. Drumroll please! First, my hands, which I have felt have been most impacted by flare. Apparently, they are not showing any changes, even though my finger looks different. On the flip side, my feet show changes. This was hard news to hear. Why? I am not sure. I think still probably due to the voice inside of me that is hoping this is a mistake, maybe. It is what it is. I all adapt and be resilient and get some fancy shoes for my ever-changing feet!

What else have I been up to, you ask? Well, I read that for every 10 extra pounds of weight you have on your body, it puts 40 extra pounds of pressure on your joints. So, knowing this and knowing my weight, I vowed to lose the weight and get my weight in the healthy BMI range for my height. For me, this meant I would need to lose 23 (or so) pounds. Before this diagnosis, I would have looked at that number of 23 and seen it as huge, being more like a mountain that was insurmountable.  Post diagnosis, there was no room for excuses. I just came up with a plan. I would devote 3 at home workout videos to my daily routine and include some yoga to finish my exercise.

This worked out extremely well, until it didn’t. I failed to consult experts and make a workout plan that would fit my goals. I instead, would repeat the same videos everyday which included high impact work (don’t worry I learned to diversify my exercise!). I love a good high impact workout. To me, there is nothing better than jumping around in your living room and kicking and punching the stress away. I would turn up the volume and follow along feeling incredibly strong, although if I had an audience, I am sure I looked less than stellar. Thank God for blinds. I would not allow my family to watch me in the early days, I was too embarrassed. So, no one could tell me I looked less than stellar!

These workouts continued for months until, one day I was doing an interval move where you start out with a slower jump rope move and then speed it up and I felt pain in my leg. At, first, it was just enough pain to get my attention. I stopped and shook my shoulders and started again. The next day, I tried the same workout (again, this was before I learned to diversify) and I got through most of the video with some pain, but when it came time to do the same move, I toppled over. I remember my sweet child coming out wondering what could have caused me to fall over. I was in so much pain I almost vomited. It was the kind of pain that really blinds you. It was plumb awful.

I set an appointment with my ever-patient PCP and decided that I more than likely tore my calf muscle. Therefore, I would need that referral to the orthopedist that I initially thought I needed at the beginning of this journey. The day came to go to the orthopedist and as I S…L…O…W…L…Y hobbled into his office, he agreed that the pain was more than likely from my calf. After he did his exam, where he could barely touch my leg without me wanting to hurt him, he wrote me a script for physical therapy.  After having read other blogs about people living with RA, I knew this was probably the beginning of a long relationship with a physical therapist. So, I went into my first physical therapy appointment with hope, that a muscle tear, although sucky, would be ok and heal. I was wrong. My orthopedist was wrong.

After suffering through a month of pain, I finally had some imaging done. Come to find out, it was not, in fact, a torn calf, it was a, wait for it, fractured fibula! I broke my freaking leg! I was shocked. I remember just kind of chuckling when my doctor read the MRI results. He was shocked as well.  My symptoms presented as a torn calf!  Nevertheless, I stayed in PT and the fracture is FINALLY healing.

Did I give up the exercise? No. I am resilient, and I adapt. I found some chair cardio videos that kept me sane. I remember that after months of regular exercise, I noticed I am a better mother, spouse, and overall person if I exercise regularly. I will tell you that I did get sick of the chair workouts, but they really helped. My knee, on the other hand, is worse. I am still going to PT for it and will hopefully get some relief for patellar tendinosis, which is my diagnosis…finally.

Exercise by itself isn’t enough to meet my goals. So, what else did I change? My diet. It’s true. In my family, I am blessed to have a panel of experts. (Think healthcare workers, nutritionists, health educators, etc.) They all have shown their support in many ways, but not over-stepped, which I immensely appreciate. I think it would be very easy for them to give unauthorized advice, but they know me, and know that I would not take this well. So, they kind of wait for me to ask questions and give me the answers then, though I’m sure they all have a catalogue of information at the ready. I learned from my family, and then my doctor, that the way I was eating was, in fact, not the best. Although I was not eating complete garbage, I needed to switch to the Mediterranean Diet. I originally thought maybe I would try the Auto Immune Paleo diet, but that seemed too restrictive for me to sustain it long-term. This was a more natural fit for me and my family. Think lots of fruits, lots of vegetables, whole grain, heart healthy foods and that is how I strive to eat. I found a great meal plan that cut calories down to 1200. The plan had recipes for breakfast, lunch, and dinner plus 2 snacks. I did not follow this to a “T”, but, I did follow the lunch and dinner recipes. For breakfast, I would just eat something low calorie, but still “allowed” within the diet. With this new diet (which is not really a diet to me, more like a lifestyle change) and the added exercise, I was able to lose weight and get into the healthy BMI category for my height. However, due to life stresses and steroids, I have gained some back. Now, time to get back to my pre-flare shape…

Holiday Flare

Ah, the holidays.  Fun, food, family, festivities and flare! My holidays started out wonderful. In our house, the holidays kind of start early as my husband’s birthday is very close to Thanksgiving. So our celebrations start early. It was around his birthday that my holiday flare set in. For those outside the Rheumatoid Arthritis community, holiday flare means decorations, painstakingly, but excitedly picked out, and then placed in the exact perfect place. For those in the RA community the word flare means a whole different thing. It puts the pain in painstaking. Your joints are even more painful than your normal threshold. They ache, they swell, and the creak!  The aches are not limited to just joints for me. The aches make me feel as if I have the flu. My whole body aches. Also, I have the pleasure of the accompanying low-grade fever with a flare. It’s as if the pain and stiffness is not enough, but a parasite of a fever tags along too. Now, this is not a pity party. This is just an explanation. A setting of the scene, if you will.

So, with the scene set, I now return to the action. I knew I was going to the Rheumatologist soon anyways, so I did not feel the need to alert him of my flare. I just asked for help while I saw him. He decided that the best thing to calm down the flare was to prescribe steroids. I have taken steroids in the past and felt the rage and the insomnia that is caused by them, so, when I saw that he wrote me a tapering three week supply, I was worried…not for me….for my family.  Picture your wife/mom is on an episode of Wife Swap with the Incredible Hulk…for THREE FREAKIN’ WEEKS!

I distinctly remember my mother calling me a week into the roids very gently asking how things were going and when I explained that things were fine, she jokingly (I think) said she was expecting the sheriff to show up at her house saying there was an incident here. Luckily, nothing really big happened. There were some Hulk moments. There was a day when I decided to add a whole extra hour onto my workout. There was another day where I decided that after my usual workout, my house NEEDED to be cleaned, when normally I clean on my rest days. But other than that, the steroids turned out to be not that bad.

Weirdly, the insomnia I was expecting did not happen, much to my family’s happiness I might add. Normally when I can’t sleep, I turn into a grouch. I mean I do not even want to be nice. When insomnia strikes, I “wake up” (really just roll out of bed at the normal wake up time without a lick of sleep) in such a bad mood, I might as well just roll back into bed, but I power through with teeth gritted and try not to jump down everyone’s throat all day. I am sure I do not succeed. But, the grouch stayed away because with RA comes fatigue. So, it sort of evened out to where I was sleeping normally and waking normally without a need for the teeth gritting.

So, no rage. No insomnia. Did I come out unscathed by the beast that is steroid? No. As most people I think are aware, steroids can cause increased appetite. As you can imagine, the holidays is not a great time to be insatiably hungry. Think of all the little treats you already have at your disposal. The lovely pumpkin pie, the warm and fragrant apple pie, the Christmas cookies, and in our house the white chocolate dipped pretzel rods. Take my diet now, Satan! Think of how you just want to eat all those things. Now multiply that and then inevitably add some more because steroids make you, again, insatiably hungry, and the outcome is not pretty.

I am slightly disappointed in myself for the weight gain. Surprisingly, not due to the change to my body when I look in the mirror. If I am being honest, maybe a little, but mostly due to the increased pressure that is now back on my joints. I know when I go back to my Rheumatologist, if I have not lost most of the newly added weight, he will inevitably notice it, as I have already deduced he is observant almost as if that is his superpower, and say something.

I can also admit, that due to knee pain, I have not exercised in a little while. Ugh! I know. I really need to get back at it. I actually did today and just dealt with the knee pain, so there!  I know that, as physical exercise seems to really impact my mental health, I NEED to prioritize this too. Also, it will help in the lack of impulse control that I experienced with my diet during the holidays (thank you Prednisone) and will help to get me back to a healthy BMI once more. Here’s to hoping my New Year’s resolutions and goals come to fruition and I am able to lose this weight before Super Observant Rheumy sees me in a month…

New Hair, Who Dis?

As the realization settled that I was/am losing my hair, I decided I would opt to shop! I make light, but this was very difficult for me. I have/had thick curly hair, and thought of myself as one who is remembered by my hair. You know the attributes people think of when they picture you? My hair was it for me. Or, at least, that was my thought. So, when I started losing it, it hit really hard for me. I came to hate Mondays the most as that was the day after my Methotrexate injections and, I do not know if it was my mind or reality, it would make the hair loss worse on Mondays. In any case, Monday showers were awful.

                I finally decided to shop after a particularly hard bath when there was so much hair in my fingers that I felt the need to show my family the amount of hair I was losing each shower/bath. It was ridiculous. So, with a handful of hair I turned to my loving husband, and said, “That’s it. I really need a wig.”

                The very next day, I researched the best wig shop in my area and found a suitable one. On the website, the reviews and customer feedback drew me to think that the shop was a perfect fit. The owners seemed to really care for the customers and went above and beyond for each person who walked through the door. Much to my liking, this turned out to be absolutely true for me as well.

                I called the shop and tearfully explained to the person on the phone (Who turned out to be the owner) that I needed a wig and why. I explained that I would likely be on the medication that is causing my hair loss long term. I also asked the COVID-19 protocols for the shop. She explained that they usually have 2 consultations going on at a time, but since I was not comfortable with that (thank you immunocompromising medication and disease) she would gladly open the shop early for me and make sure to block off the time so there would only be myself, my family, and her. I was ever-so-thankful and my unhappy tears turned into a broad smile before the end of the call.

                When we arrived, early as I am usually punctual, at the shop, I was excited and nervous. I was excited due to the fact that I would no longer be seen as balding, but someone with great hair again. But, I was nervous too. What if they did not have anything I would like?

                Luckily, it was a great experience. I spent my morning trying on wigs from short length ending in long length and settled on the long length as that represented me the most since my biological hair is long. (I learned to say biological hair that day!) Now, came the shock of the day…the sticker shock!

                Man, wigs are not cheap. Because I knew I wanted my hair to look very realistic, I picked a human hair wig. I also, again, picked a long wig. These two factors meant a very steep price! I was extremely worried. I am a stay-at-home mom and my husband is a coach and a comedian which does not equate to a huge salary. I was worried how we would afford it and, honestly, although I asked for a range of price on the initial call, this was even out of that range.

                I felt guilty sitting in the chair with the wig of my dreams on, feeling that I really wanted it, but also feeling that it is a huge ask, one that I would normally never do. But, my loving husband said we would figure it out. All of a sudden, the kind shop owner made the brilliant suggestion of asking my insurance company about covering the wig cost since it was due to a medical reason for needing the wig. Thank sweet baby Jesus for professional knowledge!  I left that day with the promise that I would return when my wig came in the next week because she had to order my color and hopes that maybe the insurance would pay for it!

                As soon as we returned home, I called my insurance company and explained what I needed. This was a very expensive wig that I felt guilty even needing the insurance to pay.  I was nervous. After what seemed like the longest hold of my life, she came back with the best news!  She said they would cover the wig and even that they would cover one wig per year as long as I was taking methotrexate, since that is a chemo drug known to cause hair loss! Who knew!?! I was shook for the second time since June, but this time in a good way!

                The following week, we returned to the shop where I picked up my wig and learned how to put it on, style it, wash it, and everything else one needs to know about hair that did not originate form their own follicles. Oh, and did I love it? Yes I did! The wig is absolutely beautiful! It is much thicker than my biological hair has ever been, but when is that ever a bad thing? It is also straight where my biological hair is curly, but still, I can’t express how much I love it. I left the store feeling like I could conquer anything and feeling like the most confident person!

                Until I wasn’t. I will say that the first time I went out in it, I went to a place I had been attending weekly, and I was super nervous that people would notice. But, they didn’t. No one seemed to even take a second glance. I thought I had it made in the shade! I continued to wear with confidence all the way to my next Rheumatology appointment. I can say that going in to the appointment, I thought nothing about my new hair. I figured it was no big deal and he would not even notice. I figured I would be the one to have to tell him how the methotrexate was causing hair loss, but he would be supportive. But, oh how I was wrong.   

                The very first thing…. THE VERY FIRST THING he said was, “are you wearing a wig?” I was so shocked and disappointed. My shock stemmed from the confidence that I had that no one could tell my hair was different, and therefore, not jump to the conclusion that I was wearing a wig. My disappointment stemmed from immediately not feeling the support from the one doctor that I thought would be the most supportive about the hair loss, since he was the one who prescribed the methotrexate. (Maybe I should ask HIS insurance to chip in!) So, the entire appointment was almost as if I was not all the way there because I was thrown off from the jump.

                All in all, I absolutely love my new hair and now have the lovely pleasure of seeing a dermatologist for my hair loss as requested by my rheumy. Lovely…

Methotrex-Hate?

At my second Rheumatology appointment, I was given a list of DMARDs, or disease-modifying antirheumatic drugs, and was told to go home, think about them, and come back when I have made my decision as to which one I would like to try. Now, as I have previously mentioned, I am a researcher at heart, so I did my due diligence. I am also an external processor, so my family was on the receiving end of this information as well. I weighed the pros and cons of all the medications that were options, and finally settled on Methotrexate.

I was nervous to try it. I knew that it was a chemo drug and one that would negatively impact my immune system, but that was the whole point right? My immune system is attacking my joints, so I need to suppress it. So, as I took my first oral dose, I thought, let’s kick some Rheumatoid Arthrit-ass! I was ready for this to be amazing and my joints to not look bent!

It was not amazing. After I took my first dose, I decided to find this amazing waterfall in the middle of my state to visit. Now, I live in a mountainous state, and to get to this waterfall, you have to travel through the mountains, by car, and then hike a bit to the falls. The ride there was treacherous. I am one who normally gets motion sick, but that was completely elevated due to the nauseating effects of the methotrexate. My poor husband was doing his best to drive carefully, but I was nauseous the entire ride. I can say that the falls were well worth the drive and the steamy hike to get there, but it was poor planning on my part for sure.

The next day I thought I would be recovered as I was back to a stationary place so logically, the motion sickness would be gone. I, in reality, was still nauseous. I took some anti-nausea meds and got through it. This pattern of nausea after the oral methotrexate, however, continued and worsened as the dosage increased. I finally caved and asked for the injections.

This was a big ask for me as I have a fear of needles. Every time I get my blood drawn, I have to close my eyes as the needle is stuck in my arm. I feel my pulse in veins and honestly can hear it in my ears as I see a needle. But, I was tired of not feeling well and knew that to be the best person, or at least a functioning person instead of a nauseated one, I needed to switch to the injections.

I then watched countless videos of how to inject methotrexate thinking this would desensitize me, and also I would learn how to inject with an auto-injector.  When I picked up my first script for it, however, I learned that I would be filling the needles and injecting them without the use of an auto-injector. I knew I would need to ask for help and supervision for the first injection. Luckily, I have a board-certified infusion nurse as a sister who is extremely helpful and agreed to teach and watch.

Now, as this happened during Covid and lock-downs, I asked for a video call with her to help walk me through it. She is a very positive person and took me step by step through it. From using the correct personal protective equipment (double-gloving) all the way to injection and proper disposal of the needle. The whole video call will forever be etched in my brain as it was scary and also a little silly, since she was very pregnant. She tried showing me on her pregnant belly how to inject it into my belly fat while her belly was very hard. Still, I got through it and even got a “good job” text from her later.

I am learning that I have a love/hate relationship with methotrexate. I love that I can tell it is working, at least for now. I do not love how I can tell. Meaning, every Saturday my joints start to get a little noisy, a little more stiff, a little more painful which lasts until Sunday (injection day) rolls around and they start feeling better. Another tell is when I was unable to take it due to vaccination timing, and my joints were talking to me then.  Boy, were they talking.

I can also say, that although I had hopes for my joints to not bend, my pointer finger is starting to bend. So much, that my Rheumatologist is now suggesting yearly x-rays when apparently, the guidelines suggest x-rays every 2 years.

Lastly, I will say, I hate some of the side effects for sure. After using methotrexate for a few months, I noticed a troubling (for me) side effect of hair loss. I am not talking a few more strands in my hair brush, which is what I thought would happen. I am talking whole chunks when I shower, fingers covered in strands as I comb my hands through my hair, and strands upon strands on my pillowcase. It got so bad that I would literally tear up and even cry every shower as my hair would amount to handfuls no longer on my head, and in the trash can instead.

I could not take it anymore, and decided to accept, nay, embrace the cards life has dealt me. Your girl is going to go wig shopping. Yay me…

Diagnosis

Seven month ago, I walked into my doctor’s office to get a referral to an orthopedist. This journey did not really begin that day though, it began a year before.

My whole life, I felt hat I had a runner inside. Have you ever felt that way or felt you had an inner-athlete telling you to stretch those legs, and fly your feet over the pavement? No? Just me? LOL. Well, I have. Although I spent my formative years dancing ballet, tap, and jazz, and running up and down a basketball court, I never really started running. So, at the age of 34, I wanted to start a running program called “Couch to 5K”. I was excited and nervous to try. I had not exercised regularly in a long time (thank you motherhood, and laziness) but I was ready. I downloaded the app and began my first run/walk. If you are not familiar with the app, it starts you out with running for a small amount of time and walking for a longer amount of time and the running intervals eventually get longer as the walking intervals shrink, so you will maintain a run for a whole 5K at the end. The first day was good. My knees were a bit sore that day, but nothing I couldn’t handle. The next day they were swollen, but I decided to push through and try again. After the second day, I was icing my knees and by the third day, my knees felt as if they were filled water balloons. It was uncomfortable enough that I decided to just go back to walking and not look back.

Fast forward to June 2021. I wanted to try again, but I wanted to get my knees (or at least my right knee) evaluated. I walked into my PCP’s office and explained to her that I wanted to start running again, but my knees would not allow me to do so. I explained what happened the previous year and I could see a light turn on in her mind. She asked me more questions about my body and after getting my family history of autoimmune diseases, decided to test my blood for rheumatoid factor.

I will never forget the day I got the results. I was out on an after dinner walk on a beautiful spring night, when I checked my patient portal only to discover that in fact, it was elevated. I was shook. I immediately cried. I am not one to jump to conclusions, but I’ll admit, I was scared. I further read that she was referring me to a Rheumatologist.

After loads of research, I noted that although it was elevated, it was not extremely high. I felt better. I felt, at the time, that there was a good chance that I did not have Rheumatoid Arthritis, and maybe it was a fluke.

The Rheumatology appointment was more like a mystery to solve, or at least that was my mental status walking into a brand new, state of the art facility that housed my new physician. He was great at the appointment. I came with a list of questions, and as an avid researcher, a list of possible diagnoses. (I am sure I annoyed him, but he was more than kind!) He took the time to really listen to what was going on and given my family history of a number of autoimmune diseases, he decided to run additional blood work. He was confident that it would all turn out negative, even going the extra mile to say that he would see me in a year to re-check my blood work. He thought that I would likely develop an autoimmune disease, but probably did not have one due to my slight elevation of Rheumatoid Factor.

However, 2 days before my 35th birthday, I got the results that would alter my life. I woke up early knowing that my results would come in and the anxiety built to an all-time high as I typed in my username and password. I clicked on the results tab on the portal and discovered I had a positive anti-CCP.

My levels were extremely high. So high, that there was no longer a doubt in my mind, or my physician’s mind that I have RA. I remember even seeing him write me a note and saying it was “strongly positive.” This news hit me like a freight train. Part of me was accepting as I knew something was going on with my body. But, there was part of me that was not. I felt that I was too young as most of the information I knew (or thought I knew) at the time was that old people had RA, not younger people. I even remember telling my very supportive husband that I was “so young.” (I later learned most people get the diagnoses in the middle of their lives.)

I spent the next several days and weeks researching everything I could. I found some very helpful blogs written by people like me. Regular people living with a progressive disease. A life changing disease. I learned that I would have to alter my lifestyle to fight/live with this disease because I am a mother to a young child and want to be able to move my body and live the best life I can. I decided to start with methotrexate while I figuratively buckled my seat belt and started my bumpy ride…