After a long (almost) four months having no real-life contact with anyone but each other, we finally were reunited with our Rankin family this past weekend. We are a small family that consists of me and Bruce, my brother-in-law, my sister-in-law, my nephew, my mother-in-law, and her guy. We decided having all been extremely careful during this time of quarantine that it was time that we could see each other in person… at long last.
My Rankin Family
As we were planning this get-together, we had discussed that we would try to stay outside, weather permitting. We even discussed whether there would be hugs or not, and we actually decided not yet.
I couldn’t resist the loving hugs from my Mama B!
In reality what happened was that as soon as we saw each other, we had to hug. I was practically in tears at the first hug I’ve had from anyone aside from Bruce in almost four months. It was such a boost for all of us to see each other that we couldn’t NOT hug. Our bubbles are solid and we intend to keep it that way so that we don’t have to wait eons to be together again. And since it was brutally humid outside, we ended up sitting in the air conditioning more than we had originally anticipated. Plus, our outdoor time was cut short when a heavy rainstorm passed through and the skies opened up! But because we have all been so vigilant, still staying at home for the most part, we were 100% comfortable with it.
It does not get much better than this…
This was originally meant to be a celebration for my mother-in-law and my nephew, who share a birthday in March. We never thought that instead of celebrating two of the fam, there were actually five of us who spent our birthdays quarantined from each other. But we did not shift the celebration because my nephew is only five years old and it’s way more important to him than it is to the rest of us old folks! He even picked out all the decorations and party favors (so it’s no surprise that we had a Hot Wheels themed party), and he proudly decorated the table. He even assigned our seats so he could have us all in exactly the order he wanted!
My nephew proudly posing with the decor that he picked for the party.
These long four months have taught me a lot about love, gratitude, and patience. I know that distance never affects my capacity to love with my whole heart, because the FaceTime calls, and pictures sent between the family sustained me through some of the lonely times when we were even isolating in isolation (which I stopped after I went for my infusion because then Bruce wouldn’t feel responsible if I were to have contracted the virus). My gratitude for my partner in crime and the home we have made together, allowing us to be comfortable during these unprecedented times remains endless. And my gratitude for my small but mighty circle has never been deeper. Finally, never having been a patient person, but learning through yoga and meditation, waiting until the time was right made our little reunion a gazillion times sweeter.
My bro… I cant even tell you how many party hats snapped because they didn’t fit his head!
So with love in my heart, gratitude in my soul, and patience as my guide, my spirit has been renewed during these difficult times, and I’m actually feeling guardedly hopeful. If you’re stuck sucking on the lemons, which is easy to do during difficult times, just remind yourself how sweet the lemonade can be if you just look at things the right way.
Now that summer is upon us, I am already mindful of the blistering heat and humidity that are par for the course living in NJ. I definitely love the summer vibe that is palpable everywhere you go, as winter coats are traded in for tank tops and Uggs go back in the closet in favor of flip flops. While I can appreciate the sentiment, summers are not easy for me due to heat intolerance caused by Multiple Sclerosis.
The sun, while beautiful, could quite literally be the death of me.
This year I am particularly anxious about it. I haven’t exactly been able to figure out why the heat and humidity can wreak such havoc on my body, even when I am confined to the meat locker conditions that keep our air conditioning pumping all summer to maintain a blustery 64 degrees inside our home. But it does.
I spend the vast majority of my time during the summer inside anywhere that it is climate-controlled, preferably where I have control of the thermostat. While I am grateful to live in a country where air conditioning is available and with a husband who appreciates the cold air, too, this really is a necessity for me, and many other MS patients, who are deeply affected by extreme temperatures at either end of the thermometer. I wish it was simply a matter of heat making me feel uncomfortable. Or me disliking being hot. However, when I overheat, it is much more serious than that. My body begins to buzz and vibrate everywhere, from the inside. All of my symptoms are magnified, which means my tremors are exaggerated (even in my voice and my eyes), I tingle from the bottom of my feet to the top of my head, and most importantly, I suffer from what is called Uhthoff’s Phenomenon, which occurs due to optic nerve damage. This is by far the scariest of my heat-induced symptoms because it causes my vision to get blurry, distorted, lose borders, or go away entirely. (Just a side-note that this can also happen when exercising, which is always a balancing act walking that very fine line between working hard, and over-working.) So naturally, I do everything within my power to avoid all of it by staying cool. In summer months, a look inside my bag will reveal snap and break ice packs, a mister, a hat to keep the sun off my face, and a good old fashioned folding fan.
Summer beach house with the family… private beach entrance meant I could come in and out of the heat as needed.
When I was still working, I jumped through unbelievable hoops to have air conditioning installed in my classroom, which was a process that did not happen quickly or easily. The principal of my building at the time was not happy about my request, and she even told me that people who had made such requests in the past were told to get a job elsewhere. I didn’t. Because the Americans with Disabilities Act requires employers to make reasonable accommodations such as this one. It was a simple solution to maintain my ability to continue to do my job, and everyone acted like it was a gift. I often had co-workers tell me “it must be nice to have AC in your classroom”, to which I always responded I’d trade the air conditioning in a second for a healthy immune system. I would have preferred to be healthy and hot than to require this accommodation in order to perform my job.
While air conditioning is my savior during the oppressive heat and humidity, I do experience “cabin fever” as the lazy days of summer lead to autumn. I am especially worried this year because I have been self-quarantining since March, and even as my world has slowly begun to open, my outings have been limited. I am just hoping that somehow we get a more temperate summer so that I can enjoy some time outdoors, soaking up some Vitamin D, without fear of losing my vision due to overheating. Thinking back to past summers and how antsy I get by being constantly held hostage by my need to stay cool, makes thinking about this one (already at home for over three months) kind of intimidating.
I dream about the days before MS limited my time at a place I love so much.
In the long run, I always do what I have to do because I have been doing it so long that it’s all I know. The point of this whole entry is that heat intolerance is real, and many MS patients suffer from it because we can not thermoregulate like others do. In other words, our inner thermostats are broken. Just a few years back, we lost one of our own because before she realized how overheated she was, she had become paralyzed and could not even speak. She was rushed to the hospital but because she could not thermoregulate, her core temperature had risen to 107 degrees, and despite being packed in ice, she did not make it.
If you are heat intolerant, please be prepared, and educate those around you so that they can help you if need be. No one wants to see another warrior succumb so tragically and unnecessarily. Even though I have been aware of my heat intolerance for many years now, it took me a long time to realize just how serious it can be. Now, there’s no way I could ever forget.
For the first time since self-quarantining on March 16, I have finally left the house (only once, but still) and I’m feeling hopeful.
I still struggle with the paradox of feeling hopeful about the progress we are making here in NJ regarding COVID_19 and the frustration I feel for all black people in the midst of their frustration that has been building for a lifetime. If it was safe for me to protest with my black brothers and sisters, I would. Things have been largely peaceful here in NJ and though people are wearing masks, being that close to large amounts of people is not a viable option for me.
Anyhoo… before I talk about my experience actually getting in a car and leaving my front stoop or my back patio, I had a great experience with a no-contact car purchase. I lease vehicles since we never really know how long I’ll continue to drive (plus my neurologist told me never to buy a car because it is the worst investment ever!), and my lease was almost up.
I chose the car I wanted online, there was no haggling, no hassling, and no stress. There was none of the wasted day at the dealership, and no “let me talk to my manager” (as the sales guy disappears to the managers office where they “discuss” pricing). All the prices were the lowest possible, and I basically chose all the options that I wanted.
A sales guy drove the car to my house, and we sat on the stoop, both masked up, so I could sign my paperwork (I went inside to get my own pen so as not to touch his), and then off he went with my old car. Even though people are now going to the actual dealership, I hope this option will always exist. It was the best experience I’ve ever had, and it’s a familiar experience that I go through every three years when I need to lease a new car.
Best experience ever getting a new car!
Ok so that was that but I didn’t have to leave my house for it. However, I did have to leave my house last week (in my new car!) because I had to take my MS infusion. I also had to get some lab work done for my endocrinologist (who I am seeing this week) so I figured I’d do the bloodwork before my treatment to limit my days out.
Getting ready to head into the lab.
I wasn’t really sure what to expect since I literally have not been anywhere since before everything shut down. I walked into the hospital where the lab is, all masked up, and wearing a cap to hide my roots, and I was greeted at the door by a nice woman who took my temperature. Having no fever, they gave me a fluorescent green sticker with the date on it to wear on my chest.
The lab procedures remained the same, except I used to have to use a touch screen and sign in, then wait for assistance. Now I told the woman behind the desk my name and what I needed done. The hardest part was trying to figure out who was actually talking to me because everyone was wearing a mask. The girl that ended up helping me waved her arms around because I really didn’t know where to go! At least we can all have a little levity during these times, and we both giggled.
Labs being done, I got in my (NEW) car and drove around the building to the side of the hospital campus that houses the MS Center. Again, I am not sure what to expect or what the procedures are because nothing is the same anymore. I toyed with the idea of calling to let them know that I was there and to call me when I should come in because (from what I’ve heard) that’s how a lot of places are working these days. But it was a beautiful day and I was actually out and about so I decided to enjoy a little vitamin D and take a leisurely stroll to the building. It sounds silly but the parking is quite far! Most times MS patients use the valet parking available to us but did I mention I have a new car? Plus is valet even happening? I did not know the answer and I never use valet anyway.
I thought I would have to have my temperature taken again because I had heard that was happening at every door. There was a chair there at the entrance, but no one seemed to be working there. Plus I still had my green sticker, so if anyone questioned me I could tell them. As I approached the MS center, I wasn’t sure what to expect. The waiting room is already very small and I couldn’t imagine how that would be handled. When I got to the door, I saw the sign that clearly stated only one person allowed in the waiting room at a time. I scanned the room, and luckily was able to walk right in since there was nobody else there at that time.
I did not sign anything or touch anything, and was told they would sign for me. Fine! It’s consent to bill insurance yada-yada… I never like using those stylus pens and always use my own pen, never one on a clipboard or in a jar anyway.
I was escorted back to the infusion suite where I haven’t been for six months. Since I was the first one there, I had my choice of spots (score!), so I chose my favorite spot. I think the strangest thing for me (although I didn’t mind it) was that all the curtains were pulled around each infusion station. Usually they are all open and it’s a more communal thing. It’s strictly an infusion suite for MS patients, and a lot of us know each other for a variety of reasons. But like I said, I kind of enjoyed the quiet and privacy!
The best seat in the house!
I am not a patient person and this is a long infusion. It usually takes 5 hours or more by the time I am all done. I get antsy partly because of the pre-medications that are required before my treatment, and partly because it’s so much sitting. Having the curtains drawn like this allowed me to get up (which I did probably every half hour) to stretch. I don’t stretch like just anybody, mind you. I go all out yoga stretching. I’m talking head down, ass up. For the record, I can not confirm nor deny whether I got caught with my ass up…. if curtains are closed, all bets are off.
Waiting for the good stuff.
The hardest part of all was not being able to hug anyone. I have been with the same neurologist almost since diagnosis… we are talking 16 years with the same doctor, nurse, office manager, etc. They are like family to me and in pre-COVID times, I always hugged them. Even when I was a weekly volunteer for over two years when I first stopped working, I collected my hugs when I got there and when i left.
Go time!
I am fully prepared for what everyone is calling “new normals”, and I think everyone who has Multiple Sclerosis (or any chronic illness, really) is more prepared than their healthy counterparts because we are ALWAYS adjusting to new normals. It’s just how we roll. But I am not prepared if new normals include never being able to hug people I love like I used to.
So overall, I had a decent first day out, but I haven’t gone out since. It’s not that I’m afraid, it’s just that if I don’t have to risk the possibility of being exposed to the virus, I’m not going to. I enjoyed the drive because, well, I was driving my new car… but also there were fewer cars on the road, the ride was quicker than usual, and it was a beautiful day. But when your glass of lemonade is half-full, every day is a beautiful day. Every. Single. One.
This week on the blog I am keeping it short and sweet. I don’t have a lot to say as COVID_19 has kept us (here in the most densely populated state) home still, opening slowly. We are making great progress, but that’s because we have been vigilant about the stay at home orders.
Additionally, I am still processing the issues surrounding the Black Lives Matter movement and I feel quite helpless because although I’d love to protest with the many others who are doing so peacefully (and with precautions such as facial coverings in place), but being immuno-suppressed with other underlying conditions, I am just not comfortable because of the sheer volume of people making social distancing more difficult.
I will say that I hear the voices of all the black people and people of color. I see their frustration. I know that they are exhausted from years of being judged on nothing more than the color of their skin. I stand with them. My voice is heard when theirs is not. My voice is heard when theirs is overlooked. My voice matters and I will always stand in solidarity with this community so that they can live in the same world as I do… the one where I am not judged by the color of my skin. There will be no justice and there will be no peace until we realize that black lives matter. And let’s be frank… “all lives” don’t matter until black lives matter.
Martin Luther King, Jr. said, “I look to a day when people will not be judged by the color of their skin, but by the content of their character.”
Me too.
This is my #yogafamily and we are all different colors, shapes, and sizes. Isn’t it our differences that make us beautiful?
In preparation for my blog this week, I decided to read what I had written about my diagnosiversary in past years, because I just can’t let June 2 slip by without acknowledging it. I read through the entry, and I realized that on this, the 17th anniversary of my diagnosis of Multiple Sclerosis, I would have written the same exact thing I shared last year (which I shared from the year before, and the year before that) on the topic. The feelings I experienced on that day, and during the weeks and months that followed, are still as raw and as powerful as they were 17 years ago. It doesn’t matter how much time passes, telling the story immediately brings me back to that moment in time, so here’s what I have shared in years past. Nothing has changed about that day, except year 17 has brought many challenges, namely a diabetes diagnosis and the COVID_19 pandemic, but it has also brought many more rewards for which I am grateful every single day. So here’s what you go through when you are diagnosed with a chronic, progressive, and debilitating disease.
I am so grateful for all that my body can do despite living with MS likely since the early 90’s, having a fused spine, being a breast cancer survivor, and also living with diabetes.
June 2 is a very special day for me. It’s a random day, and it probably means nothing to anyone but me (and possibly my husband). It’s an anniversary that does not celebrate a milestone or an accomplishment, but June 2, 2003 is a date that I will never forget. On that day, I was given a diagnosis that undoubtedly has changed the course of my life.
Every year on June 2, I am brought back to that day, now [seventeen] years ago. I relive the details of the day moment by moment. I remember what I ate for breakfast (oatmeal), and I remember what I was wearing (white and blue plaid capri pants, a blue button down shirt, and white and blue sneakers). I remember stopping at Dunkin Donuts for a large iced coffee (black) on the way to school. I remember the panic attacks. All. Day. Long. I remember that I had permission to leave after my last teaching period so that I could get to my appointment on time. I remember that my appointment was at 2:30, and I remember that Bruce took a half a day so that he could go with me.
So we got in the car, not talking to each other at all. On the way to the neurology appointment, we stopped at the radiology office to pick up a copy of the MRI results, just in case the doctor hadn’t yet received them. They kindly folded the paper and put it inside an envelope. In the elevator up to the doctor’s office, Bruce asked me if I was going to open the envelope. Without hesitation I said no way. I knew I wouldn’t understand what was written there, and why not just have these last moments together before the inevitable?
We sat in the doctor’s office, staring at each other, waiting for for him to deliver the news. We didn’t talk. I was too busy having one panic attack after another to even attempt a conversation. After what seemed like an eternity, we finally heard his footsteps approaching. We heard him pause outside the door, and we heard him pull my chart out of the bin outside the room. Then, to our complete and utter shock, we heard him let out a huge sigh, before knocking once and entering the room.
The doctor walked in, greeted us, and told us that I have Multiple Sclerosis. From that moment on, it was as if I was watching someone else’s life unfold. I only heard bits and pieces because my mind began racing. To be fair, I was not yet educated on MS, but at that moment, it felt like I was given a death sentence. We know now that MS is fatal in only the rarest, most severe of cases, yet there was a part of me that did, indeed, die that day. The road ahead of me required a complicated detour that I was not sure I could even navigate.
We left the doctor’s office in a total daze. Suddenly we were occupying space in a world that was completely different for us, yet for everyone else it was unchanged. In this drastically different world, what did we do? We went to Target. I guess we were searching for some sense of normalcy in this new, unknown world of ours. We sat in the car afterwards and called our families to share the news. It wasn’t exactly the kind of news I looked forward to delivering, but at least I finally had an answer. After months of appointments, X-rays, MRIs, blood work, evoked potentials, and cognitive and neurological tests, I was done. It’s not what I wanted nor what I expected, but it was something. The phone calls I made on June 2, 2003 were some of the most difficult conversations I have ever had in my entire life.
Following my diagnosis, Bruce and I holed up at home, and didn’t speak to many people other than each other. Some friends called to offer support, and others dropped off the face of the earth. All the relationships in my life were tested, and certainly the dynamic within them shifted. I learned a lot about my friends, and mourned the loss of many who did not know how to deal with my diagnosis. Sadly, this happens with every relapse, but [17] years later, my coping mechanism for that kind of loss has been fine-tuned, and I have built a support system that holds up.
These women right here, my MS sisters, have never left my side, and although our initial connection was that we all have MS, we could not be more in-tuned with each other if were sisters by blood.
On this day every year, I take inventory of my life since diagnosis. It has not been an easy journey, but it has been amazingly rewarding in so many ways. Since my diagnosis, I have learned that I am stronger than I ever imagined I could be. Everyone has an inner strength, but not everyone realizes it because you don’t summon that strength until you need it. I have discovered my voice to educate and to raise awareness, and my passion for patient advocacy. These are integral parts of who I am, and without MS I don’t know who I’d be right now. One thing I know for sure is that on my diagnosiversary, I always give thanks to the powers that be for all of the parts of me that MS has made better, and for all the things I am still capable of doing despite the MonSter.
I. Am. Strong.
For [17] years I have acknowledged the importance of my diagnosiversary, and this year is no different. I’m still grateful for the many gifts I’ve been given, and even though my journey has not always been an easy one, I know that every bump in the road makes me a stronger, better version of myself. I don’t celebrate the anniversary that falls on this day. I celebrate all the things that I have managed to accomplish, all the things I can do, and all the things I am, MS and all.
I would be lost without this guy, my rock, who has been at my side every step of the way, regardless how rough the terrain has been. **photo credit: Idalia Photography**
