2021 Rewind

It really is true when they say “the days are long, but the years are short” and 2021 was no exception. My family and I experienced a lot of very long days, but what I can’t believe is that it has officially been one year since the words Multiple Sclerosis came out of the ER Doctor’s mouth.

It shouldn’t come as a surprise though that this huge milestone has snuck up on me. My days have been filled to the brim since the twins were born and having returned to work full time. In between trying to get three kids ready for school, playing make believe and peek a boo, picking up the house, working, putting the kids to bed, late night dinners, taking care of the animals and dealing with everything else life throws at you, I would always say to myself, “I need to write another blog”, and then before you know it, eight months had passed.

With that being said, let’s rewind to May 2021…

The boys arrived a little earlier than expected via cesarean at the end of May. My husband and I got to spend a very short 20 minutes with them before they were whisked away to the NICU. Thinking back on it now, it does all feel like a blur. Once I was discharged, him and I would visit the NICU each day, bouncing between each of the boys’ rooms until they were finally put together which made it a little bit easier to handle.

I can’t even begin to describe how painful it was to not bring our boys home, it was one of the worst days of my life. I was also feeling immense guilt spending so much time in the NICU while our daughter was back at home without us. We were very lucky to have such a good support system to take care of her while we were at the hospital, but it was still unbearable. I’ll never forget when we were finally able to bring the boys home to meet their big sister and be a family under one roof. That was one of the best days of my life.

The day after the boys were born, I received a call from the radiology department about setting up an MRI. A few choice words came to mind as that was the last thing I wanted to think about as I was just freshly cut open, but I begrudgingly made the appointment.

They already know I have lesions on my brain, this was to see if I also had them on my spinal cord. More specifically, they wanted images of my cervical spine (neck) and thoracic spine (middle back). Based upon previous symptoms I had in the past (tingling, numbness) my neurologist was confident that I had them there as well. These results would help determine how aggressive we should be when choosing a disease-modifying therapy.

I had the MRI in July and the next day I received the results in our automated health chart system. Moral of the story, don’t read your results before you talk to your doctor and then visit Dr. Google. You would think I would know better by now, but clearly I still hadn’t learned my lesson. Besides identifying more lesions which was expected, it was also noted that I had a small syrinx in my spinal cord. Long story short, there was no syrinx but there was a lot of wasted hours of concern.

Shortly after the MRI, I met with the neurologist where we finally went over the different medications currently available for RRMS. After some initial blood work, I finally settled on Kesimpta, a B-Cell therapy. I’m sure you have seen the commercials but if not, it is a monthly shot that is self-administered at home. Our immune system uses B-Cells to help fight infections. For some reason, instead of protecting my immune system, my cells attack the myelin on my brain and spinal cord causing damage and disrupting the communication. These shots lower my B-Cells and hopefully stop them from causing anymore attacks.

I was able to take my first shot in October and even though I definitely felt some tough side effects, I also felt immediate relief. It seemed as though I was finally heading in the right direction since being diagnosed. I was no longer waiting around nervous about whether a flare up was right around the corner, I was being proactive.

I’m not naïve to the fact that I still have this disease and another attack could happen at any time, but being on a high efficacy DMT does make me feel safer. Of course, if it doesn’t work, there are several other options available to those with RRMS.

So what’s next?

Right now I am in a holding pattern until my next neurologist appointment and MRI which will be happing soon. The MRI will be my new baseline since starting Kesimpta and then I will have another one three months later to see if any new lesions have developed.

Am I nervous? Definitely.

But the good news is, unlike my first few blogs when I was originally diagnosed with MS, I am no longer constantly thinking about it. Of course it pops into my mind every once in awhile or when I have to take my monthly shot, but that is a far cry away from where I was a year ago.

I am still going to check in here from time to time as I have new details to share. But what I am most hopeful for in 2022, is that my days continue to be long and filled to the brim with snuggles from my kids, family adventures and self-care.

Be Well – Be Happy – Be Kind – Be Present

-Ms. Meant To Be

It’s The Final Countdown!

We finally have a date! I will be having a scheduled C-section on Friday, May 28, that is 30 days from today to be exact. One of the twins is breech and hasn’t moved from his comfortable spot for several weeks now. He could always flip at the last minute, but my intuition is telling me that he is enjoying his piece of real estate a little too much to make the journey. He is technically “Twin B” but has pushed his brother “Twin A” out of the way so he is now presenting first.

How am I feeling? Well, honestly it depends on the hour. Two weeks ago I felt amazing and still had a ton of energy, then week 32 hit and I haven’t been the same since. Even the smallest chores have been wiping me out lately. I’m definitely tiring out a lot easier. I have a list of projects that I want to do before the boys arrive and I have all the motivation in the world when I start, but about 20 minutes later I find myself needing to take a rest which then leads to a two hour nap. The struggle is real. I can’t believe the difference a week has made. Of course, because it has come on so suddenly I can’t help myself but think “am I this tired because of the pregnancy or is this MS rearing its ugly head?” I promise though, I have been doing a whole hell of a lot better in not letting this diagnosis consume me like it did when I first found out about it. There are actually some days when I “forget” I even have Multiple Sclerosis and am only reminded of it because I see a post from one of the MS Instagram accounts I follow. Even though it hasn’t been in the forefront of my thoughts lately, I can feel the anxiousness about it starting to slowly creep back up again, which is probably why I felt it was time to write another blog. I can’t contribute the anxiety to one specific thing, I think it’s a multitude of reasons. As the pregnancy progresses I am definitely feeling more “off” and tired than I did before. I am also anxious about speaking with the anesthesiologist and them being able to do a spinal block for the C-Section without me having had an MRI on my spine yet. Furthermore, once the boys are here I am at a greater risk for a flare up again and need to start focusing on my treatment for this disease. In other words, as I get closer to the end of the pregnancy, all the things that I will be having to encounter and deal with (besides snuggling and taking care of our two little ones) is starting to hit me and feel more real. With all that being said, I really am trying my best to just focus on the here and now, of course sometimes that is easier said than done. A couple of weeks ago, I also got invited to a virtual MS Conference through my doctor’s office for patients and caretakers which I got to participate in. It was very informative and I learned a lot, but it also might be another reason I’ve been thinking about MS more lately. I’m damned if I do, damned if I don’t.

Besides being physically tired, I am also fed up with all the doctor’s appointments every week. The silver lining in it all, is that they are keeping a watchful eye on me and the twins which is a good thing, albeit sometimes a pain. It still hasn’t fully hit me that the boys will be here before we know it and in a few short weeks we will quickly become a family of five.

Another exciting piece of news I have to share since my last blog, is that after going back and forth for months, I am now fully vaccinated against COVID-19 thanks to Johnson and Johnson. I did not come to this decision lightly, and don’t know what it could mean for us years down the road, but I made the best educated decision I could for both the boys and me after talking to my MS and Maternal Fetal Medicine doctors. Don’t get me wrong, I am not naïve, I know that this shot does not protect me 100% percent from getting COVID-19; however, I do believe if I do get it, it will keep me out of the hospital and the morgue. I know if I didn’t get this shot and got COVID-19 it would not be a good thing, so it has definitely given me a little more peace of mind and hopefully some of the antibodies were passed on to the twins. Twelve hours after the shot I had a mild fever, aches, was tired and had a sore arm. However, after a good nights rest and some Tylenol all of my symptoms pretty much disappeared except still feeling a little fatigued and sore, but those quickly dissipated in the next day or two as well. Of course, I received the shot on a Friday and that following Tuesday to my surprise they pulled the J&J vaccine after reports of 6 women developing blood clots. If you’ve been following my blog posts, you won’t be surprised when I tell you I was definitely stressed and my health anxiety was ramped up when this news came out. I am happy to report that I am well out of the 6-13 day window that patients had developed these rare clots and the J&J vaccine has now been given the greenlight again to be distributed.

But I did have to keep telling myself, “there’s nothing I can do about it now and everything we do in life has a calculated risk.” Getting a vaccine, driving in a car, having babies, deciding whether or not to take DMTs for Multiple Sclerosis and even walking across the street all have some sort of risk associated with them. I don’t know about you, but I would rather keep taking these calculated risks and deal with whatever comes head on instead of staying at home watching life pass me by and wonder where the hell did the time go. We only get one life, so my advice is to get off your phone and get off your ass, and go enjoy it while you still can! Don’t wait for a life altering diagnosis to make you realize how precious life really is because we never know when our countdown will end.

Be Well – Be Happy – Be Kind- Be Present

-Ms. Meant To Be

Where Do I Go From Here?

That was the exact question I asked my MS doctor at my latest visit. I have a diagnosis, I have somewhat come to terms with the uncertainty of this disease (depending on the day), and I have learned a lot about it in just a short amount of time, but what I didn’t know, was what was the next step for me. Based upon our conversation, it became very clear that my next step in this journey is to simply wait, at least until the boys are born. After they arrive I will be sent for another MRI, but this time on my spine to see if any lesions are present. The results of this will help her determine how aggressive we should be with the DMTs and which one she will prescribe. After I start taking them I will have MRIs every few months to see if there are any new active lesions, and if so, she will recommend a new DMT. That is the other difficult part of this disease, at least regarding the medicine. It is a lot of trial and error and just because it slows the progression down for a year or two, doesn’t mean it will work year three, so then it is back to the drawing board and a new treatment. Everything had been moving so quickly since my visit to the emergency room and now it feels like I’ve been placed in a holding pattern. It actually reminds me a lot of pregnancy, some days and weeks fly by, where others absolutely drag. Not only am I saying, “I am ready for the twins to be here,” but I am also selfishly thinking “I am ready to start treatment.”

“Where do I go from here?” wasn’t just a question I had asked my doctor, but it was also a question I had asked myself. I had been given this life altering news, so what was I going to do about it, what was my next step? As you can tell, the fact that you are reading this blog shows you one of the answers I came up with to that question. It was time for me to share my story and I am glad that I finally did. The amount of support, love, comfort and kindness that I experienced from everyone was damn near amazing. I truly couldn’t believe I had spent so much of my energy wondering if I should hit the publish button, what a waste of time that was. I felt as though I was no longer buried under this immense weight of a secret diagnosis. MS no longer stands for “My Secret” it is now “My Story.” I can now share with people if I am not feeling great or am sad about what has transpired since January. I can also pick up my MS doctor’s phone calls at work and not have to rush to the other room and whisper because I don’t want anyone to know. These seemingly simple things may only have a little weight to them, but when you have a lot of little things, it begins to add up quickly and before you know it, you are crushed underneath all that weight. Each of you had a part in helping me lift up everything I had buried myself under in such a short amount of time. Every time someone reached out, it felt as though a small pebble had been removed until finally I was able unbury myself and move above ground again. Thank you.

One of the other amazing things about publishing my story is that it gave me the opportunity to connect with several wonderful and strong individuals who also live with MS. If I had kept quiet I would have never had that chance. I was able to read their stories, ask a ton of questions, learn a lot about how they manage this disease and it also helped me to feel not so alone. It also proved that MS is different for everyone and you can’t compare your story to others, it truly is a snowflake. From different therapies, coping techniques, diagnosis journeys and symptoms, the differences were easy to see. However, the one common theme throughout all of them, was their willingness to help. They all remembered how scary of a time it was for them when they were first diagnosed, whether it was 11 years ago or 2 years ago, it’s not a day you ever forget. At the end of each of their correspondence, they all told me to reach out to them with any questions as they arise, I assured them that I would. From the bottom of my heart, thank you.

So what’s next for me? I would say, continuing to live life to the fullest. I know I called this time right now, “a holding pattern”, but as negative as that may seem I have been really appreciating it. These next 13 weeks are the last time that it will just be the three of us before the twins are born and I am trying to soak up every second of alone time with my daughter while we still have the chance. It is also 13 weeks I don’t have to worry about MRIs, postpartum flare ups or DMTs.

Instead of constantly worrying about the future I have been doing a good job on focusing on the here and now, because I will never get it back. So at this present moment the only thing I am focusing on is my family and enjoying this Shamrock Shake, that my husband will also never get back. 🙂

Be Well – Be Happy – Be Kind – Be Present

-Ms. Meant To Be

Everyone Has A “Thing”

The motto of this year so far for my family and I has been “it’s always something.” There is always another bit of tough news, always another doctors appointment, always another test that needs to be done, which means always another test result we are waiting on. I am exhausted and it is only day number 49 of the new year. Things just seem to be moving so fast, for example, I started the premise of this blog five days ago with just the title and there is already so much that has changed in those few days, even before I had the energy to write the first sentence.

Honestly, I don’t even have the energy to write down everything that has been going on, but we will be okay and get through it, what other option is there? Just know the twins are healthy so I find a lot of relief and happiness that it is one less thing I have to worry about.

With everything that has been going on, it actually has strengthened the point that I was originally going to write about. No matter how big or small it may seem to you, everyone has a “thing.” Everyone is going through something in their life whether it be personal health issues, health issues of a family member, financial trouble, marital problems, trouble at work or how about not having electricity and water like those currently in Texas. The list could go on and on. Our “things” may all be different or they might sometimes be the same, but we can all agree that everyone has a “something” even though they may keep it quietly to themselves. I’m able to understand this philosophy more and more the older I get and especially since being diagnosed with Multiple Sclerosis. Life isn’t always rainbows and sunshine, it’s messy, and there are a lot of people battling silent storms. MS can be an invisible disease and you may never know someone has it unless they are in the middle of a flare up or decide to disclose to you.

My point?

My point is actually twofold.

The next time you feel like being an asshole to someone because they told you “sorry, you can’t use that coupon, it’s expired” or berate the exhausted and constantly abused DMV employee, think to yourself, “in the grand scheme of life does this really matter?” Yes, I agree, the little things in life can be annoying, I’m human too, not a robot. But please take note of the word little and think to yourself “would I be treating an individual like this if I knew they were battling cancer and going to chemo every few weeks, or how about someone who is a single parent who is struggling to put food on the table for their child?” I hope your answer would be a resounding “NO.”

This idea can also be made for those on the receiving end. The next time you may be subjected to such behavior, try not to take it too personal. Realize that the person unleashing a verbal tirade or childish eye roll may be going through some serious shit in their life that they can’t control and you just happened to be the target that day because everyone has a “thing.” Don’t engage, don’t fight fire with fire and do not let it ruin your day, just move on. Of course, don’t get me wrong, there are some people in this world who are just absolute miserable SOBs and not even winning a million dollars, while sipping cold margaritas on the beach will make them crack a smile. Why? Because they think they should have won 5 million dollars, the greedy government will take out taxes, all while they get a brain freeze and a terrible sunburn. Perspective is important. Instead of getting mad, I feel sorry for these individuals and wonder “what in the hell has happened in their life to have shaped them to be this way” and I also think “margaritas sound good right about now” and I do my best to move on.

So please, try your best to be patient with your fellow humans, because you never know what someone could be going through. Also, take this philosophy to heart “Don’t take life too seriously. Nobody gets out alive.” I still don’t have this philosophy down, but I’m making it a priority, especially now, promise. Besides everyone having a “thing” to worry about, no one has ever made it out of this life alive, it’s one of the few things we all have in common. So make of it what you can, and do what the hell you want while you still have the time, as long as your not hurting others or yourself in the process, physically or emotionally. Maybe throw a margarita in there every once in awhile too.

Be Well – Be Happy – Be Kind – Be Present (and don’t forget, Be Patient)

-Ms. Meant To Be

Playing The Longest Losing Game Ever

I am already coming up on the three week mark since I was diagnosed with Multiple Sclerosis. I’m also quickly learning that this diagnosis is both physically and mentally exhausting.

I feel like I’ve been forced into a sick game of this or that titled “MS Life or Normal Life.” How do you play you ask? Well let me explain! Receive a diagnosis for a chronic disease that presents itself in all sorts of odd symptoms. More specifically, fatigue, blurry vision, tingling, numbness, confusion, memory loss, slowed thinking, dizziness, pain, etc. Then experience one or several of these symptoms and start guessing, “is this symptom because of MS or is this just normal life.” Want to make it even more challenging? Add pregnancy into the mix that can also share many of these same symptoms. Having fun yet, because I’m not.

I’ve been playing this game a lot unfortunately, and I’m not sure if it’s because the diagnosis is still so new, or if people with MS think about this sort of thing everyday. It is making me question everything, and I’m already tired of it. Is that tingling in my hand because I have a flare up coming on again or was I just sitting funny? I couldn’t remember a specific word, is that because my memory has been affected from a previous lesion? Or how about when I wake up in the morning and my vision is blurry and I panic for those first few moments as I wonder, is my body attacking my optic nerve again, before I blink it away and can see. I follow a few MS accounts online and one posted something the other day that really bothered me. It said, “It was nice meeting you. I forgot your name as soon as you said it.” I am beyond guilty of doing this and have been for quite awhile. I always chalked it up to not being a great active listener sometimes, but now this post is making me question that it’s possibly due to MS? Come on! I even asked my husband if the name amnesia happens to him when he meets people and he said it absolutely does. It’s just a prime example of this annoying game that I constantly play.

I still haven’t figured out exactly how to take my game piece off this board. It is starting to feel like the longest game of Monopoly ever and each time I pass “GO” I don’t collect $200, I just earn another reason to be anxious and question what the hell my central nervous system is doing in there. My hope, is that just like the Monopoly game, I will grow tired of playing it and I can just put it on the closet shelf to collect dust and cobwebs. I may occasionally open the closet and think to myself, “maybe I should try playing that again”, but then I’ll remember how terrible of an idea that is, because no one really wins, you just lose time and energy, and then I’ll just close the door and walk away.

However, I’m not there yet, so until then I will keep buying properties, paying the banker, relax when I have a chance to enjoy free parking once in awhile and continue to question if I dropped my phone again because I’m just clumsy or because of this MS cloud that continues to threaten me.

Be Well – Be Happy – Be Kind – Be Present

-Ms. Meant To Be

I can see clearly now….

Things moved surprisingly quickly after my emergency room visit on January 11. I immediately heard from the MS specialist to set up my consultation, my OBGYN to meet with maternal fetal medicine and the eye doctor who sent me to the ER. They weren’t messing around, and I appreciated the sense of urgency, especially since I was still blind in one eye.

I met with an MS specialist that Wednesday for a consultation and I was a nervous wreck. I had been looking a lot up online about MS and was worried about what type I had, as there are several. I’m not going to get into all the different types, but based on my heath history the doctor believes I have Relapsing-Remitting MS (RRMS). Of course, as I mentioned in my previous post, there is no one test that shows you have MS, it’s a process of elimination. So she ordered blood work for other infections or diseases that sometimes mimic MS, mine all came back negative.

In a nut shell, with RRMS, attacks ebb and flow. When attacks occur, those are the times that the disease progresses and I will experience symptoms depending upon where the lesions occur in my brain, optic nerve and/or spinal cord. When I am not experiencing an attack, I am in remission. The symptoms will hopefully then disappear during these times, even though sometimes this is not the case, but there is no disease progression. Remissions can be for weeks, months or years, I hope that I am the latter.

When I started looking more up about MS and reviewing the symptoms, a lot of things that I wrote off as normal were more than likely MS attacks or exacerbations and she agreed. Tingling in my hands and feet for several days, my entire foot going numb while running, the 2019 eye issue, etc.

Going over my scans, she said I had about roughly 10 lesions in my brain, so she seemed surprised I didn’t experience or wasn’t aware of more attacks in the past. Of course, I could have and I just don’t remember, because I chalked it up to a pinched nerve or something else. She did mention that disease progression and lesions can occur without symptoms because the other parts of the brain take over when the other parts can’t do their job. Our brains are truly amazing. With that being said, I’ve more than likely had MS for years and just didn’t know it. I find peace in knowing that I’ve lived with this for awhile, at least 5 years we think and I’ve been functioning just fine! This is going to sound rather odd, but I am thankful that it finally presented itself as a severe case of Optic Neuritis. Even though it was awful and at times debilitating, it was enough of a red flag to bring me to the doctors and quickly receive a diagnosis of MS, even without a MRI with contrast or spinal tap. For some people this takes years. Don’t believe me? Please take a moment to look up Selma Blair’s MS story, that woman has been through hell and back. I now have the opportunity to work towards curbing the progression of the disease with disease-modifying therapies (DMTs) as there is no cure for this, yet. I won’t be able to start any DMTs until after the twins are born, but I will begin as soon as I can. 30, 20 or even 10 years ago my treatment options would have been limited or nonexistent. However, so many new DMTs have come to the market since then and research is being conducted daily to find new treatments and hopefully a cure. I don’t know if they will find a cure in my lifetime and I’m not banking on it, but I can at least be optimistic, what’s the harm in that?

I left that appointment feeling very hopeful about my future with this disease, my pregnancy and my vision. I was able to quickly start a steroid treatment administered via IV for one hour a day over three days to reduce the inflammation in my optic nerve and to recover my lost vision. I could tell a slight difference even after the second treatment and I am happy to say that the vision and color in my left eye is back to normal, so I can finally drive!

I do want to say that the day after my consultation, my husband did get to have his shoulder surgery as scheduled. What a pair we made that week, but we pushed through. One of the main reasons we were able to push through was because of my parents, and to them we are both thankful! From my dad driving me and my husband around to our appointments until I could see again and confidently drive, to my mom making us meals for the week and watching our daughter so we could both recuperate. We couldn’t have done it without their love and support, we will be forever grateful to them for making that stressful time a little less stressful. I also want to thank friends and family who I told soon after I was diagnosed for their love and support too. You all made me feel understood and not so alone. The power of a fresh bouquet of flowers to lift a spirit, mine specifically, is almost magical, so thank you. It’s a good feeling when I am able to talk and write about it openly, I’m just so very hesitant. “You can’t unring a bell.” Once this very personal piece of information is out there, I can’t take it back and I can’t control how people will react to it or to me. There’s that word again that I talked about in my previous post, “control”, seems to be a common theme.

In regards to my pregnancy and MS, it should be status quo the rest of the time, I hope! The surprising thing was that I had an attack while pregnant which is unusual, but not impossible. Our immune systems are suppressed during pregnancy which reduces the flare ups, I guess I just wasn’t one of the lucky ones to experience that. The major concern is after they are born. After pregnancy our immune systems ramp back up which causes a strong possibility of an attack postpartum. This is why I want to start DMTs as soon as possible so I can try to avoid the impending attack. One other concern is the ability to have an epidural during labor depending on if I have any spinal cord lesions. It’s a possibility that I won’t be able to have an epidural or if I have to have a cesarean I will have to be put fully under according to my OBGYN. I’ll be talking with an anesthesiologist in the next few weeks to discuss my options. I’d rather know now what I can and can’t have, then find out the day the twins decide to arrive.

Now you are all pretty much caught up with my MS journey thus far. I have a follow up appointment with the MS specialist next week so she can test my vision again. I also have several more questions to ask her that I have been writing down as they come up. Until then I plan on just living my best life (albeit with a lot more intention), spending my time with my family, working, taking care of myself, getting ready for the twins, writing, slowly telling a few more people about my diagnosis and having as much fun possible as I can in the middle of a pandemic while pregnant!

Be Well – Be Happy – Be Kind – Be Present

-Ms. Meant To Be

Well that escalated quickly…

I promise, just like everyone else I was ready to start the year 2021 off right, I was optimistic even! Especially since last January ended with me rupturing my Achilles Tendon, requiring surgery and completely derailing my running goals for the year. Then of course…

  1. COVID-19 came into the picture upending the lives of everyone in the world.
  2. Three grandparents tragically passed away (unrelated to COVID).
  3. Tried to stay sane raising a three year old during a pandemic while working from home.
  4. Husband started a new job in the middle of a pandemic.
  5. Also found out he needed shoulder surgery
  6. …….and we found out we are expecting TWIN BOYS!

It’s been a rollercoaster from beginning to end, and I can’t even have a drink!

I remember specifically saying and laughing to my husband on New Year’s Eve “can we please have an uneventful year in 2021 with no surprises, I think we’ve met our quota.”

Boy, was I wrong…

I woke up on Friday, January 8, 2021 and my left eye was what I can best describe as fuzzy. Also, the color was not as saturated/bright as my right eye. (I’ve had this happen before in 2019. I went to the eye doctor back then, and she said everything looked just fine and that one eye usually tends to be stronger than the other, so I left and she appeased my nerves for the time being.) That early 2021 morning, I chalked up to being pregnant and a possible prescription change. I had read vision changes were normal during pregnancy, plus I’m having twins, so that must surely be why my vision seemed off so no need to call the eye doctor, and I went to work.

That weekend though, I knew something was up and it wasn’t just a prescription change. My eye got progressively worse over the weekend to the point that I could only see grey and make out some shapes. It was as if this grey, fuzzy film had covered my eye and Dr. Google was not providing me with any relief. It was unfortunately time to call the real doctor.

On Monday, January 11 I called my eye doctor and thankfully they said they could fit me in that afternoon. My regular optometrist was unavailable so I met with someone new. She did all of the normal and boring visual acuity tests that I had experienced in the past. However, I could tell real concern started to come over her when she had me try to read the letters projected on the wall with my “bad” eye. My eyesight was 400/15, easy to say, it was not good. Even at the biggest letter, I could barely make it out, so with that came even more tests. I completed test after test as instructed, and each time the doctor was really not saying much. I finally had the courage to ask her “do you know what’s going on?” even though I really didn’t want to know, and the shaking in my voice was noticeable to both her and me. I was an utter mess, I had a strong feeling it wouldn’t be good news.

She finally told me that she believed I had a retinal artery occlusion, otherwise known as an eye stroke. She was 90% sure that was what had happened, but couldn’t say with absolute certainty since it wasn’t presenting as a textbook case, my eye looked completely healthy with no blockage.

After the diagnosis, she instructed me to go to the emergency room immediately and wrote on her prescription pad that I needed a stroke lab workup as well as an MRI. She handed me my note, and I suddenly felt like a kindergartener again with my teacher giving me a pass to go to the bathroom. Young, confused and I had to pee, I’m pregnant with twins, remember? She wished me the best of luck but I could tell she felt bad and that she was not expecting to have to deliver that kind of news when I showed up to her appointment that day.

Any of my close friends and family know that I have severe illness anxiety. The smallest thing that goes wrong in my body suddenly has me spiraling and planning my funeral. I know, I know, it’s not healthy and I constantly say to myself, “you’re smarter than this, you know it’s nothing serious.” But it doesn’t matter what I tell myself or what other people tell me, when your in “it”, “it” is all you can think about and “it” is all consuming. Only those who suffer with “it” like I do really understand. One day I even wrote down every single illness I thought I had ever had since I was a young child (oh yeah, this issue has been going on for awhile). I had over 20 separate illnesses written down that I had at some point in my life self-diagnosed myself with. I chuckled to myself as I wrote on the bottom of the list, “I am smart, but I do NOT make a good doctor” because I was thankfully wrong every time. In the medical field when diagnosing patients there is the saying, “when you hear hoof beats think horses not zebras.” All I can say is good thing I am not a doctor, because I would think the whole damn zoo had escaped! I don’t know why I am this way, I just always have been. I’m sure it has a lot to do with being a perfectionist and when something goes wrong it’s no longer perfect, and then that goes into me not being able to control the situation or the outcome, fear of the unknown, afraid of dying, blah, blah, blah. If just reading about it is exhausting, try living it!

Why am I telling you all of this history that I’m not proud of?

I’m telling you because you would think that after finding out I had a stoke and was being sent to the ER I would be an absolute mess, but I wasn’t. I was surprisingly calm and matter of fact about the entire thing. I think it’s because I finally had an answer and I was no longer suffering from the “fear of the unknown” that had put my life into a tailspin for the past three days. My family on the other hand, were not so calm. Can you blame them? An hour ago they were thinking my prescription had changed and now I just told them that I had been instructed to go straight to the ER.

“Excuse me, zebras, please try not to trample me when you run through.”

I called my husband and he drove me straight to the ER where I had an EKG, blood work and MRI with absolutely no friends or family by my side, because of course, we are in the middle of a pandemic. That man sat in the parking lot for over 6 hours, only leaving to pick up the dog, our daughter and to get a COVID test. Oh yes, I forgot to mention, he was slated to have shoulder surgery that Thursday, clearly my timing is impeccable.

As time ticked on, my new found sense of calm severely diminished when it came time to have the dreaded MRI. I had never had one before and that “fear of the unknown” feeling came back with a vengeance. I was beyond scared what they would find. The doctor told me he was checking to see if I had any signs of hemorrhaging from a possible stroke. The MRI room tried its very best to provide a relaxing atmosphere, with its dark ceiling and tiny lights to make it seem like you were looking up at the night sky. I’m sorry to report that it did not complete its goal of relaxing me, not even a little bit. They also let you choose any music you would like to listen to during the 20 minute MRI process. Country was my genre of choice for those who may be curious. I was so nervous I was literally shaking on the table. Thankfully, the ladies in the MRI room were super sweet and understanding. They finally were able to get me to calm down and in I went into the machine.

It was really loud and the table I was on shook quite a bit, but it was painless. However, I was never worried about the actual machine and test, it was the results. The only reassuring part was that the twins were moving up a storm the entire time, they were probably thinking “what in the hell is going on out there?”

They rolled me back to my room after the MRI where I sat and waited anxiously for the results. I was also absolutely starving at that point. I begged the nurse for some sort of snack and she kindly gave me a white cardboard box which contained a turkey sandwich, crackers and juice. Of course the sandwich had to be turkey! Those of you who don’t know, while pregnant, all deli meat needs to be heated up before you eat it, so I settled on the crackers and juice in the hopes that would provide my stomach some relief. I had enough going on, I didn’t also need to deal with Listeria too.

After a short wait and a snack the doctor came in and his first words were –

“I don’t quite know what to make of your MRI.”

“Oh boy”, I thought, “here we go”, thinking they had found a brain tumor and I was going to be rushed to emergency surgery any minute. But as I stated before, I’m smart, but I’m a very, very bad doctor.

He said “they found multiple lesions on your MRI that are seen in people with Multiple Sclerosis.”

It looks like after 32 years I was finally right, something was really wrong and the entire zoo had escaped and was running right towards me.

He said that he was going to contact the neurologist on call to review my scans and get their opinion. You would think that I would have been a mess being delivered this life altering news while alone, but I wasn’t, because I had prepared myself that MS was a real possibility. It just also happened to be a disease that I had wrote down on my long list.

Before my eye appointment, I spent way too much time looking up my symptoms (typical) and what could be causing them. In my research, I had a strong feeling that what I was dealing with, was something called Optic Neuritis. The blurriness, lack of color, slight eye pain and my vision getting progressively worse, were all symptoms that pointed to Optic Neuritis. This is common and sometimes the first symptom of people with MS. I’m also pretty sure the seven plus hours of dealing with doctors and tests with little to no food had wiped me out too much to allow me to have a real proper freak out, so I’m thankful for that. All I really cared about at that point was getting the hell out of there and going home.

He was gone for almost an hour so that gave me plenty of time in the room by myself to ask Dr. Google his/her thoughts on the matter. The first two things I Googled in that room were “is MS a death sentence” (which it’s not by the way) and “can I live a normal life with MS.” A lot of what I read that night was reassuring albeit scary. There are about 2.3 million people in the word living with this disease, those with MS live about only seven years less then those without it, people can still run marathons, have families, work and there are more thank likely people in your life who have it, and you would never even know.

The doctor finally came back after hearing from the neurologist and agreed the lesions are consistent with MS; however, they stopped short of diagnosing me with it. That is when I learned that there is no one test that definitively shows that you do or do not have MS, which is why people go so long without being diagnosed. It is diagnosed through process of elimination. They check you for a ton of other possible diseases or infections before a doctor lands on MS. The reason the neurologist stopped short of diagnosing me, even though I had several lesions, is because they did an MRI without contrast because I am pregnant. The MRI I had (T2) shows my entire lesion load (old and new) where a (T1) with contrast shows current areas of active inflammation. I will have many MRI’s throughout my life to track how the disease progresses.

He said that they would put a referral in for me to see an MS specialist and then I was sent on my way. I do want to note, I have already met with the specialist and she was honest and reassuring. She again pretty much confirmed that I have Relapsing-Remitting Multiple Sclerosis (RRMS), but more on that in my next post.

I was so relieved and happy to be sent home and to finally see my husband and daughter because I needed something normal after all of that. My life was just turned upside down and I needed comfort, familiar and a whole lot of love. I hugged the both of them a lot tighter that night and I can assure you, I plan on continuing to do that for as long as I can. It’s amazing how your whole perspective on life can change in one second. That’s all it took, one second, for me to realize that all these silly things in life that I worry about just don’t matter. You know what matters? Family, friends and my emotional/physical health. Let me write that again. All that matters in my life is FAMILY, FRIENDS AND MY EMOTIONAL/PHYSICAL HEALTH. Period. End Of Story. Fin.

I can’t control what the future holds for me and my newly diagnosed MS. What I can control though, is focusing on the present, how I react, my attitude, being a good mom/wife/daughter, getting enough sleep, reducing stress, being kind, exercise, eating healthy, enjoying the little things in life and of course being thankful. This is such an overused phrase that I bet we’ve all used at least once in our life but it bears repeating, “you don’t know what you have until it is gone!”

I want to end explaining how I came up with the title of this blog MS. Meant To Be. When I was in the MRI machine the country song Meant To Be started to play and brought tears to my eyes. The chorus goes, “If it’s meant to be, it’ll be, it’ll be, baby just let it be…” When that song started playing I thought to myself, if they do find something, it was meant to be and I can’t control it, just let it be.

I have Multiple Sclerosis and it was meant to be.

I have shared my diagnosis with a very select few people in my life, all for different reasons, and I don’t know if this blog will ever see the light of day, but if you are reading this it’s because I decided to open up about it and it was meant to be for me to share my story with you. I’m not keeping quiet right now because I’m ashamed or embarrassed. It is just still so fresh and new and I have so much to learn about this disease. A part of me is also a little worried that I may be viewed differently. I just want people to know that I am still the same person. MS isn’t me, it’s just something I have to live with the rest of my life and this disease will have its ups and downs. At this present moment, I just want to focus on my family and having a healthy pregnancy these next 18 weeks. I am using this blog as an outlet for my good days and my not so good days since January 11. If I do decide to share my story, it will be to bring awareness to this disease and to provide comfort to others who also may be living with MS or who may be diagnosed in the future. I want you to know, you are not alone in this journey.

Be Well – Be Happy – Be Kind – Be Present

-Ms. Meant To Be