happy birthday to me!

Once you get to know me you will quickly learn that my sister and I reference unending amounts of Seinfeld quotes and other remarks from favorite T.V. shows and movies. We joke about how we have “no original lines.” One of my (many!) favorite scenes is when Kramer says, “It feels like Tuesday,” and Newman replies, “Tuesday has no feel.” Well, today happens to be my birthday, 29 to be exact, and if 29 had a “feel,” I definitely don’t feel that number.

Looking back, 29 seemed so old to me. So mature, so established, and maybe at the time it was. Yet in today’s society, 29 looks a lot different compared to what it did 20 years ago. I may be mature but I still have so much growing to do. And when it comes to being established—well, let’s just say I can confirm that the two vertical lines that stand between my two brows are settling in quite nicely.

Whenever my birthday rolls around each year, I end up reflecting on my life with chronic illness. I don’t know if other people do that but to me, my diagnosis and birthday go hand-in-hand. I wasn’t born with myasthenia, but life without it seems so distant. Myasthenia is like having another appendage now. It’s simply my norm.

Funny how I’ve now become accustomed to a life with MG compared to when I was initially diagnosed. The beginnings of myasthenia were like moving to a new country. It was uncomfortable, foreign territory, and it was going to take time before I became familiar with the people, places, and language. Talk about distant.

My birthday this year will be a quiet one, which I do not necessarily mind. Here I am, 29 years old, cozied up in my little apartment, feeling incredibly grateful for the life I get to live. I may not exactly be where I thought I was going to be at 29 but hey, I never thought I would thrive with a rare chronic illness. I’m not necessarily the most adventurous person but taking a leap into this life with myasthenia and using it for good is one of the bravest things I have ever done. I didn’t know what I was doing, but I found my way. I hope you find yours too.

My Top 10 Summer Essentials for the Chronically Ill During COVID-19

Living in the Midwest is no picnic in the summer. It’s hot, but the worst part is the humidity. The air is thick, making it extremely difficult to breathe, particularly for those who are chronically ill. With coronavirus limiting our ability to patronize public places (as it should), the only escape is being outdoors. But when it is muggy, the heat becomes too oppressive to enjoy nature, leaving us stuck inside. My apartment may be strikingly organized as a result of this, but in order to preserve my mental health, I have to get some vitamin D.

Nevertheless, I know that having myasthenia gravis means I have to limit my time in extreme temperatures; the heat tends to exacerbate symptoms. Like anything I do with MG, I have found ways to adapt. Check out my top 10 essentials for the chronically ill during this COVID summer:

1. The first product I love is a throwback. Evian Facial Spray is one of my secret weapons. The spray has kept skin looking fresh and hydrated with the purest mineral water for more than 30,000 years and is perfect for those hot sticky days when you can’t escape the sweltering heat. With a few spritzes, you will feel fresh, replenished, and polished with that new dewy glow.

2. The second product I like is more fitting in the midst of this unprecedented time, quite literally—face masks. Face masks are required in many places, but I dread having to wear one when it’s 90 degrees out. I’m really loving these stylish masks from Kitsch. The protective gear is simple yet fashionable and is made of 100% cotton. They come at a great price point as well; 3 for $12.00! If you are looking for something that is simple yet super effective, check out the masks from Mighty Well. The adaptive apparel brand created a pretty innovative mask designed for patients just like me. Some key features: antimicrobial, adjustable nose clip, moisture-wicking, anti-order, lightweight, soft ear loops, and water repellent! If that didn’t have you typing their URL already, another reason I like them is that they come in various sizes and you can either get one, a three-pack, or a five-pack. Well done, Mighty Well. Well done. (*Use code MERIDITHO10 to get 10% off!)

3. Next up is something I think we can all benefit from: hydration. I don't know about you, but sometimes I forget to drink water during the day. I also hate lugging around big water bottles that sweat, so I wanted to find something that was more conducive to my needs. These sleek glass tumblers from Amazon are on my wish list. The tumblers are glass but are protected with pretty silicone sleeves, making it easier to grip and avoid sweat. The tumblers can be used for both hot and cold beverages and are dishwasher safe. Adding to my cart right now!

4. Here’s a fun one: Have you heard of Minnidip? St. Louis native Emily Vaca came up with this genius idea. The luxe inflatable pool is designed as an “adult kiddie pool,” and is the cutest addition to your backyard. The pools have the greatest aesthetic; scalloped edges and pretty prints. They are made from non-toxic material and contain no lead or heavy metals and are super easy to inflate, drain, and deflate.

5. An easy way to stay somewhat comfortable during the heat is to throw on a hat. Seems obvious, I know, but thanks to my mom's younger days as a lifeguard, she always taught us to wear a hat when you can’t control the sun beating down on you. She learned the hard way; sun-sick with no protection. The Adidas Saturday hat is my favorite right now; it’s sophisticated, keeps the sweat away, and can be worn with all types of outfits.

6. One of the hardest things for me as a chronically ill person is getting in and out of a hot car. Most of the time I either avoid driving when it is too hot out or I run errands with a loved one so they can keep the car cool before I hop in. Nevertheless, being independent is important to me and I don’t want to have to rely on others or struggle my way through. Roll out the car shades…Retractable car window shades are a smart way to keep your car cool and protect you and your loved ones from the dangerous UV rays you are exposed to in the car. They are easy to install, can be used in a push of a button, and fit the majority of cars.

7. To all the 90’s kids: remember mini handheld fans? Turns out they are still awesome. You can find so many different styles and colors. Some even plug into your phone! Technology, man…I like this mini fan from Amazon because you can clip it on just about anything.

8. If only there was a way to combine the Evian spray with the handheld fan…oh wait, there is! This portable misting fan is a 2 for 1 deal. It’s lightweight, compact, and claims it can work for 6 hours!

9. If you know me, you know I love a good jumpsuit. You might be thinking, long pants in the summer; how is that helpful? This particular jumpsuit is one of my favorites because it is extremely versatile. You can wear it around the house to lounge in or as a swimsuit coverup, wear it to run errands, or you could even dress it up for a casual night out. This piece is mainly made of rayon and is unique in that the pants are slightly cropped, giving this jumpsuit a more relaxed, summer vibe. It is loose-fitting and can be super stylish if paired with a white cropped tank! Comfy and cute for the win.

10. And last but certainly not least is the adjustable clamp umbrella! This might be my favorite out of the entire list because it can be used for all ages and all mobility types. Strollers, chairs, wheelchairs, walkers—the umbrella allows you to be outside, in the shade, without having to sacrifice accessibility.

Being chronically ill, we all have to make sacrifices sometimes. Hopefully with these items though, you will find that you can still enjoy the summer season a little bit longer now that you have these tools in your back pocket. Stay cool!

#themeritoption #chronicillness #invisibledisability #raredisease #autoimmunedisease #spoonie #butyoudontlooksick #myastheniagravis #healthandwellness #mightytogether #mynewnormal #mgcantstopme #patientleader #patientinfluencer #chronicillnesswarrior #mgstrong #patientengagement #disabilityadvocate #patientadvocate #stlhealth #spooniesisterhood #autoimmunesisters #spooniesupport #healthblogger #medicalblogger #knowyourworth #forwhatitsworth

SCIg: My First Month with Hizentra

Liquid gold…or, more commonly known as immune globulin (IgG). A few weeks ago, I started my first treatment with subcutaneous immune globulin (SCIg). For those of you that aren’t familiar, let me give you a quick tutorial about IG:

IgG: A common antibody found in human plasma.

Plasma: a clear, straw-like colored liquid portion of your blood that carries cells and proteins throughout the body.

SCIg: Purified immunoglobulin from healthy donors that is injected into the fatty tissue.

IG can be administered either intravenously or subcutaneously. I am infusing subcutaneously. This means I will be injecting purified IgG under the tissue between my skin and muscle.

After a few screenings with the pharmacist and other healthcare professionals, as well as dealing with the ins and outs of paperwork, insurance, and financial responsibility, I was sent all the supplies I needed to begin SCIg.

The medical supplies came in two big boxes filled with syringes, tubing, vials of IgG, typical first-aid material, more paperwork, and other specific equipment needed for the infusion process. Seeing all of this was a lot to take in at first but I was comforted in knowing that my care team from KabaFusion was going to guide me through the entire process.

I have been infusing with Hizentra for about a month now, and the most common questions I get are:

Does it hurt?

That depends on where you inject, correct insertion of the needle, and proper prep. There are 6 injections sites which means I have six needles to insert every time I infuse. Your care team will determine the number of needles; some people do 2, 4, or 6 like me, it just depends. I pre-medicate with Tylenol and Banophen as prescribed by the pharmacist, and I do believe that allows for less pain and in general, makes me a little more relaxed.

The needles are inserted in the fatty tissue of the body; for me, that is the lower abdomen. Some choose to insert in the back of the arms or thighs but so far, I have only infused in my stomach. The second time I infused I injected a little higher on my stomach where there is less fat—that hurt. I could definitely feel the difference. So, lesson learned; the fattier the better. Don’t worry, I have plenty of belly fat to go around…

The needle must be inserted at a 90-degree angle relative to where you pinch your fat. If the needle is slanted, it could cause irritation and moreover, burn.

Lastly, and probably the most important thing to ensure it doesn’t hurt is making sure the solution does not go past the needle when prepping it in the tubing. Again, this is to prevent burning when you inject it.

So, does it hurt when you do it properly? Not really. Granted, they are needles so they don’t feel like paradise, but they are relatively small and if you insert them correctly/get to know the spots on your body where it hurts less, you will be fine. I only know all of this through proper education; ask your nurse to coach you through the entire process so you can be off infusing on your own in no time!

What are the side effects?

That is entirely dependent upon the patient. Personally, the first side effect I noticed was how sleepy I get. IgG can cause fatigue and the antihistamine can cause drowsiness. I’m pretty exhausted during the infusion and after the infusion—I usually sleep at least 3 hours after if not more.

The second side effect I typically see is stomach distension. The first time I infused my stomach was HUGE! It was a little shocking to see how swollen I was but if anything, it was just uncomfortable.

My injection sites become a little tender and sore to the touch. Sometimes I have slight bruising, but nothing too noticeable unless you really look.

The last side effect, and maybe the most unpleasant is the headache that can develop after infusing. My headaches have ranged from dull to piercing. I can definitely see this getting in the way of my activities of daily living but for now, I’ve been able to tolerate them with some Advil and hydration.

Do you think it’s working?

I have no idea-- it’s only been a month! Do I think it has the potential to help? Absolutely. Have I felt any noticeable differences regarding my MG? Maybe a slight improvement in my vision but it is hard to tell. As my nurse explained, every person is different. Some people will notice effects within a month while others will see an improvement down the line after a few months.

How was it to stick yourself?

I have 6 needles that I stick myself with. Changes in quantity can be made but to start, I am utilizing 6. I am not afraid of needles per se, but the idea of intentionally puncturing my body with something sharp is not a pleasant thought either. Therefore, while the sight of needles doesn’t scare me, I think it is the unknown sensation of sticking myself that causes a little anxiety. My sticking process as of right now:

-pinch a section of fat.

-inhale.

-insert the needle quickly as I exhale and count out loud really fast.

It’s a little quirky but hey, it helps me get through it! I had never inserted a needle in anyone before let alone myself, so I was really curious as to how much pressure to use/what sort of resistance I would feel. Now that I have been exposed as to what it is supposed to feel like, I know it will only get easier with time. Also, you really can’t go too far in (at least I haven’t yet!) as the needles have plastic butterflies on the ends that prevent them from going in any further.

Why are you doing this therapy? More specifically, why are you infusing subcutaneously and not intravenously?

My care team and I decided to proceed with SCIg due to a recent MG flare I have been coping with (chronic double vision and droopy eyelids—something I haven’t experienced in years). The goal is to not only help me get off the prednisone I have been on but to alleviate some of those symptoms that have returned. We also chose to go with SCIg because, in theory, this treatment is supposed to minimize some of the typical side effects one sees when undergoing IVIG. When I utilized IVIG years back I had excruciating headaches, nausea, and fatigue. So far, the side effects have been bearable with SCIg, and I hope it will continue to stay this way!

First time infusing Hizentra with 6 needle sites.

One month in with SCIg and I am remaining optimistic. It’s an adjustment for sure, but I am confident in my ability to self-administer and take charge of my health. Now, going to let this liquid gold work it’s magic….stay tuned!

#MyastheniaGravis #SCIg #immuneglobulin #patientadvocacy #patientexperienec #patientperspective #Hizentra #chronicillness #raredisease #autoimmunedisease #neuromusculardisease #invisibleillness #invisibledisabilities

Disclaimer: This blog post is about my personal experience and is not intended to be used as a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on this site.