The first thing I noticed when I sat down with Amanda was her friendly and easy going personality. I recognized the tiredness that comes along with fighting for your life etched into her features – it was the same look I had worn for so many years – and yet she was eager to engage and converse with me. Her goal, she said, was to help people.
We’re living in the middle of a pandemic and this, Amanda reminded me, will only add to the number of people receiving organ transplants. She has a wonderful support system but not everyone has received the same support she has, and Amanda said if she can be part of the village to someone else that she has created for herself, it would make her entire experience worth it.
Amanda received her first heart transplant at 15. While other kids her age were worrying about prom and which boy liked them, Amanda had bigger things at hand. Taking multiple immunosuppressants a day, avoiding germs, staying compliant with her treatments, it all made Amanda fit in less with her peers and more with the adults in her life. Transplant causes one to mature, quickly, and this is something Amanda experienced firsthand.
When talking about her experience with transplant, she was quick to reveal that one of her biggest struggles throughout the entire process was that of dealing with her mental health. The entire body is analyzed prior to and post transplant and yet mental health is an area often overlooked.
“I knew I needed a therapist, so that’s when I got one,” Amanda states, and it’s a sentiment I fully agree with. Transplantation is a process that takes a toll not only on the physical body but also the mental one, but there is little to no support for this invisible battle. And Amanda says she feels there should be greater emphasis put on the mental health journey following transplant.
She is currently back on the list, this time for a new heart and kidneys, despite doing everything right. She was compliant with her treatment, took all the medications prescribed to her, and yet the blow of knowing this failure of her organs took place as a result of the medication prescribed to save her life, she says, is her current stand out moment of the entire process.
Despite current struggles, Amanda looks back on her transplant as the biggest gift. Her overall experience has been incredibly positive, and her heart provided her with the opportunity to graduate high school, attend college and study abroad for a semester. She is an amazing chef who has worked with transplant patients regarding their diet and in hospitals hoping to make a change in the hospital menu we all love to hate. She works with her local organ procurement center, is the spokeswoman for the national heart association and records an amazing podcast called ‘Unfiltered survivors”.
I asked Amanda what inspires her to keep going and she said, “Why not?” It’s as simple a sentiment as they come, and yet those two words leave a profound impact. Amanda’s desire to help others penetrates through all that she does, and she says it is the driving force behind her fight.
“It’s all worth it,” Amanda told me, even in the midst of her current struggles. The pain, the struggle, the agonizing waiting period and the unexpected weight it imprints on both the mind and body, it’s worth it. Life itself is the most beautiful gift, a reminder I, too, find myself in need of often. It can be so easy to get swallowed up in your own journey, and I admire Amanda’s ability to keep sight of the bigger picture.
As our meeting together winded down, I asked Amanda if there was anything else she wanted to say while she had the floor. She said she credits TransplantLyfe to a lot of her success, and if this was available to her years ago she might be in a very different place now. “Put it all out there,” She said, “And use all the resources available to you. We have created this village that is so full of love and support, don’t hesitate to lean into it.”
Find her on social media: https://www.instagram.com/chefwithaheart/
Or listen to her podcast: https://unfilteredsurvivors.com/episodes/
Originally from CCYAN
Hi! My name is Nathalie, one of the CCYAN fellows of 2021!
TW: mental health
Today I talk about how I found what coping skill worked best for me to manage my IBD and my mental health. If you want to find out more information about me or CCYAN, be sure to check out https://www.ccyanetwork.org and @ccyanetwork on social media.
If you or a loved one with IBD is struggling with mental health and needs immediate help, please cal 911, text START to 747-741 or call 1-800-273 TALK (8255).
Remember, you are not alone.
This is a term I coined myself, comparable to PTSD. In my world, this stands for Concurrent Traumatic Covid Syndrome. It can’t be post traumatic because the trauma is ongoing. It definitely has happened because of COVID. And the effects are very real, and I think it’s safe to say that I will never be the same person that I was before.
I wouldn’t say I am an overly social person in “normal” times, but I do enjoy regularly spending time with my small circle of loved ones. This has been vital to my spirit since I stopped working. I went from interacting with over 160 students plus colleagues every single day, to interacting with no one. When I left my job, I was lucky enough to maintain relationships with so many students, and I also was blessed to find a very special MS family as well as a strong yoga community. And while I do enjoy my alone time, being around my loved ones definitely sustains my spirit and fills my heart.
Recently I was super excited for a very special event that had been postponed due to the pandemic, and it was a celebration for someone very important to me. We had been eagerly discussing it for so long, and I couldn’t believe the time had come. Along with it, however, came a fair share of anxiety, given my vaccination status.
I listened to the guidance available at the time (and my MS Specialist) and got my vaccinations in January and February. When I reached full efficacy in March, it was so liberating. Not that I acted recklessly or changed my behavior much, except dining indoors twice. Then I came to find out that because my immune system is suppressed (as is typically the mechanism of action for many MS treatments) my body did not make ANY antibodies against the virus at all. None. Tested three times to be sure, and yet still… nothing. This changed everything for me because as everyone else started being able to socialize and get back to some semblance of normal life, I had to retreat back to quasi-isolation.
But this event was too important for me to miss and so with Bruce by my side and my big girl panties on, we drove over two hours to celebrate.
This is a picture before we left for the event, showing how amazingly my mask matched my dress!
As we sat waiting for the event to begin, I started to feel my anxiety rising. I got the cold sweats. I started shaking. I was hyperventilating and nearly paralyzed with fear. It was an all out panic attack.
Bruce dragged me to a spot where he felt the air conditioning pumping and told me to look around. At that moment there was no one around us. He knows that crowds are often a trigger for me even in non-covid times… and maskless people inside when I have no defense mechanism in my body have made this a million times worse.
With tears pouring down my cheeks and barely able to move, I managed to get to the car with Bruces help, even though I was holding his hand in a death grip, slicing his fingers open with rings. If he wasn’t there, I’m pretty sure I would have been curled up on the floor in the fetal position. As it was, I was so thankful that no one saw me in this state, because the last thing I wanted to do was take away from the joy of this celebration.
I am so grateful for my other half who always knows exactly how to take care of me.
The point is, many who are prone to anxiety are having more issues than people know about with the uncertainty of the future and covid cases on the rise again. Mental health is extremely important, and that’s why I’m talking about this even though it’s also very private and personal.
I’m here to tell you that mental health issues are as real as those related to physical health and we all need to recognize that everyone is affected differently, especially given the current public health situation.
We all have our own comfort level and we all need to be respectful of each others’ boundaries. I tried so hard to make myself comfortable in the situation I was in, but I just couldn’t do it.
I was so upset that I missed this event that I had been anxiously awaiting. And I was mad at myself that I couldn’t do it. And then, with some distance, I realized I couldn’t be mad at myself for something out of my control. I can’t get mad at myself when I have an MS relapse, and similarly, I can’t get mad at myself for having a panic attack.
Luckily the family was very understanding of what happened and hopefully I will get to celebrate this event with them on a smaller scale at some point when things are safer for me. I still felt awful about it (and continue to do so) but in the moment there was nothing else I could do.
The moral of this story is that we need to talk about mental health and we need to take it seriously. These are trying times. Be kind to others. Protect each other. Check on your friends and loved ones to make sure they are ok. And most importantly, take care of yourself because you can’t pour lemonade into anyone else’s glass if your pitcher is empty.
Originally from Michelle on Schizophrenic NYC
Do you have a friend with a mental illness? Odds are most likely you do, or at least know someone that does. Have you ever wondered about their perspective of the friendships they have? Do you wonder why it can be so difficult for a person with a mental illness to make friends sometimes? Michelle Hammer from Schizophrenic.NYC talks about friendships and mental illness in this episode of Schizophrenia And The City.
Originally from Two Being Healthy
Several months ago we published a list (click here to read) of 12 things NOT to say to someone with a chronic illness. We thought it would be fun to do the alternative and give a list of 12 things TO say to a person with a chronic illness…or at least what we wish people would say instead!
1. I know you’re not up for company, but I’m leaving a bag of groceries outside for you
In our opinion, this is just about the nicest gesture you can do for someone under the weather. If someone asks ‘can I bring you something?’, most of the time the person is going to say no in response because they don’t want to be a burden. Stating you’re leaving a few food staples outside for someone takes the decision out of their hands and most of the time, the food is well needed and always appreciated.
2. You’re so tough (or any positive adjective) for fighting this like you do
Recognition of the constant battle someone is fighting means a whole lot. It may not be easy for them, but having someone acknowledge it gives them much needed credit for their fight.
3. Up for some company? I can come by for a movie
Someone may not be up for a day shopping or being around a bunch of people, but that’s not to say they wouldn’t love to have you come over with blankets and snacks for a mellow movie night.
4. How have your appointments been going?
We are always beyond touched when someone asks this, it shows not only that they care, but they care enough to want to details!
5. How are you feeling today?
Similar to the doctor appointment question, small inquires like this just show you constantly care.
6. Can you send me an article on your condition? I’d love to understand it a bit better?
It’s hard to understand conditions you’re not living through, ask your friend to send them an article explaining what they have, it will be incredibly appreciated.
7. Call me when you’re up for going out, we can grab a coffee
This one puts no pressure on the person, but shows them that when they’re up for an outing, you’ll be there.
8. Don’t worry if you have to cancel? I totally get it, no offense taken.
This comment is worth its weight in gold. A person with a chronic illness has most likely avoided making plans for the fear that they would have to cancel. Unpredictability is the name of the game, tell them you understand and know they’re not a flake!
9. Hey do you need any help getting ready for so-and-so? I can help do your hair!
Showers and styling our hair is sometimes enough to wipe us out for the whole day, but it gives you a little boost if you feel clean and somewhat put together. Offering a helping hand may not be the first thing that comes to mind, but it could help conserve someone’s energy so they can use it for when they’re actually out!
10. Are there any errands you need to run that you’d like some company while doing? I can drive us
It may seem like a small offer, but it could be the difference between someone being able to complete their errands or having to stay at home.
11. You don’t have to entertain me – I can just be with you
Em: My best friend would always say this to me and it would always make me feel so loved and like I could just be boring and lay there and she wouldn’t mind.
12. Just focus on your health and healing, I can imagine it’s pretty overwhelming
It is! If you can, try to minimize other stress or obligations in someone’s life when they’re overwhelmed with their health situation.
Things to say to someone with a chronic illness – Let us know what you wish you heard more of!
– Em + Kate
Originally from Tina B ALIVE
I’m a pretty positive person. I also like to think that I’m fairly logical most of the time. But I go through these fazes of feeling hugely sorry for myself and crying for no particular reason. The fact that I can’t understand it or battle to explain these fazes to myself only makes them worse. I then feel frustrated and irritated with myself for being so silly and weak. The worst part is that I hate silly and weak people. So how do you deal with the fact that you’ve become something you hate? It’s pretty much a downward spiral that becomes difficult to get out of.
People tell me that, considering what I’m going through and dealing with, it’s perfectly acceptable and even normal to feel sorry for myself and to be upset. But I don’t think that it is. Especially because there are people in the world that are so much worse off than I am. How do you make people understand that? Then you feel bad for being angry and upset because of that. Again you come back to the downward spiral. I know that no one ever said it was going to be easy, but does it really have to be quite so hard?
I’ve thought of hundreds of ways to try and explain these fazes of despair and self-pity and all I can come up with is the age old cliché of the bottomless pit. Which is daft, because every pit or hole has to have a bottom to it at some point. But if you can picture the cartoon image of someone falling down a hole so deep that you can no longer hear them screaming and don’t hear them hit the bottom, that is a lot like how I feel. Imagine how terrifying it must be to fall for so long that you begin to wonder when you are going to hit the bottom. I guess that’s when fear becomes impatience. So maybe I’m still OK as long as I’m scared. Maybe you give up if you don’t have any fear or despair. Maybe it would just be easier if I didn’t have so much time to think about it.
Originally on Damian’s Channel
Our Ambassador Damian gives us 5 things to give someone with MS. Some may surprise you!
This week, I wrote a letter to my younger self about being diagnosed with (and living with) Multiple Sclerosis. I speak to the me that was in college, feeling awkward because for some reason, unbeknownst to me at the time, I found myself unable to keep up with the partying and social aspects that kids that age generally count on as part of the whole college experience. Without further ado, here goes!
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Life is not easy. Sometimes we are thrown curve balls. Sometimes we hit them out of the park, and other times we miss entirely. I could tell you that it’s great being an adult with the freedom to make your own choices, eat ice cream for dinner, and stay up all night partying. But the truth of the matter is that choices have consequences that you’ll have to deal with somehow. I could tell you that it’s normal to burn out on the social scene in college, even if your friends are still going strong. I could tell you that the incredible, overwhelming fatigue is normal, along with the extreme clumsiness and weird visual disturbances that you write off so easily without giving it a second thought. The truth of the matter is that you didn’t know any better, and why would you? No one at age 19 thinks that they will end up where I am now, at age 49, living with a chronic, incurable, and debilitating disease. No one at age 19 thinks that they will one day be a breast cancer survivor, and why would they? And certainly, no one at age 19 believes that her gene pool is so shallow that she would have to wade through the world of diabetes to boot. Somehow we all begin our adult lives wearing rose-colored glasses, impervious to how harsh reality can be. I wish we could all wear those glasses to shield us from the truths that exist in the real world, but at some point, you have to put on those big-girl panties and face the facts.
The biggest piece of advice I can give you is that even though you might think that you are invincible, you are not. No human being is. You must listen to your body, and be proactive about caring for it, because it’s the only one you get. If something doesn’t seem right, trust your instincts and do not hesitate to seek medical care because with all serious illnesses, early treatment is key. The world of Multiple Sclerosis is a scary one, and knowledge is one of the only things that can help it feel less intimidating. The truth is that in that world you will find a support system of friends who you consider family, only better, for the simple fact that they understand everything that you deal with on a daily basis. The most important thing you can do for yourself is surround yourself with people who exude positivity, happiness, peace, and light. Your MS will thank you because stress and negativity of any sort will manifest physically causing your MS symptoms to flare. Plus it’s so much nicer to be around people who are content rather than a whole bunch of “negative Nellies”. You are strong, but you are allowed to have moments of weakness, and it is at those moments when you can lean on the support system you have built. No one can be strong 100% of the time, and it doesn’t make you weak to express frustration, sadness, anger, or fear when you feel the need. You are, after all, only human. Just remember that those emotions are not productive and if you dwell on them, you will never be truly happy. Happiness comes from gratitude for all that you have and all that you are, and recognizing (and acknowledging) those pieces of you will always propel you forward.
My beautiful MS sisters, who came into my life exactly when I needed them most and they have not left my side since.
So live fully, despite your limitations. Live happily, despite your fear. Smile from your soul, because you are an innately optimistic person. Love with your entire being, and don’t waste your energy on those who don’t reciprocate that love. Be true to who you are, and be comfortable in knowing that you are enough. Most importantly, remember that there are no guarantees in life, and it doesn’t always follow your plans, so roll with the punches and make the best of every single day because life is fleeting… but also beautiful. As long as you are fully present you will never have any regrets. Trust me. I know these things. I have lived them. It has taken me time and reflection, plus a lot of work on myself to achieve acceptance and understanding. I did it for both of us, because we deserve nothing less.
Originally posted on Chronically Ellie
Did you know that there about 37 million people in the U.S. have migraines? The World Health organization suggests that 18 percent of women and 7 percent of men in the U.S. suffer from migraines.
So, what is a migraine? According to Professor Peter Goadsby, of King’s College London and Trustee of The Migraine Trust, migraine is an “inherited tendency to have headaches with sensory disturbance. It’s an instability in the way the brain deals with incoming sensory information, and that instability can become influenced by physiological changes like sleep, exercise and hunger.”
There are many different side effects with migraines, including but not limited to, nausea, light and sound sensitivity, inability to function and many others.
There are 4 phases to a migraine headache. Prodrome, Aura, Headache and Postdrome
Prodrome is the first potential phase of a migraine, and it can begin hours or days before the actual migraine hits. In a way, it’s a sort of a warning sign that you may be having a migraine. However, sometimes you may not realize that you are experiencing prodrome until the migraine has hit. Some potential symptoms are aphasia (difficulty finding words and/or speaking), difficulty concentrating, fatigue, cravings, mood changes, neck and back pain and sleepiness.
Aura Migraine are separated into two main categories; migraines with aura and migraines without aura. Migraines with aura are only experiences by about 25% of Migraineurs, however, if you have more than 2 auras you are classified as having Migraines with aura.Aura can look very different for each patient, however here are a list of some possible symptoms of aura.v Allodynia (hypersensitivity to feel and touch, where what would e normal is painful)v Aphasiav Auditory hallucinationsv Confusionv Decrease in or loss of hearingv Dizzinessv Hemiplegia (one sided paralysis that only occurs in hemiplegic migraines only)v One sided motor weaknessv Parasthesia (prickling, stinging, burning, numbness, tingling usually on the arms and legs or face)v Olfactory hallucinationsv Visual (these range greatly from blurry vision to partial loss of sight to blind spots to wavy lines)v Vertigo
The headache phase can be, but is not always, the most debilitating phase of a migraine. Migraines symptoms are actually not confined just to the head. Symptoms can be felt around the whole entire body. Furthermore, the headache phase can be “silent” or “acephalgic,” where you cannot feel the pain or the headache phase does not occur. These types of headaches can leave you with the same disoriented symptoms that any migraine will leave and recovery should be treated like any other migraine.
Some symptoms of the headache phase are:v Pulsing or throbbing frequently unilateral pain, however migraine can be bilateral.v Pain around the eyes, sinuses, teeth and jaw due to inflammation of the trigeminal nerve.v Confusionv Dehyrdrationv Dizzinessv Nausea and/or vomitingv Neck painv Hot flashes/chillsv Heightened sensitivity to light, sound and/or odorsv Vertigov Anxiety/panic
The way that I describe how I feel after a migraine is like I’ve been “hit by a bus,” and that I have a “migraine hangover.” Postdrome can last for hours, if not days. My doctor told me that for as many days as I’ve had a migraine, I need to give myself as many days to recover. That is because postdrome symptoms may include fatigue, lowered mood levels, and poor concentration and comprehension.
Migraines are so hard to treat because every symptom is distinct to each and every patient. While many patients experience some of the same symptoms, each migraineur has different triggers and pain solutions. For me, going gluten free, undergoing allergy immunization, Botox and biofeedback helped me immensely. However, there is no cure for migraines, only ways to manage it.
If you’re new to migraines or just want to learn more, here are a few of my favorite migraine websites. They have testimonials, statistics and other helpful bits of advice.
https://americanmigrainefoundation.org/
Sources:https://www.migrainetrust.org/about-migraine/migraine-what-is-it/more-than-just-a-headache/
https://migraine.com/migraine-basics/migraine-phases/
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. Since my vaccination status is null due to the Disease Modifying Theraoy I am on for MS, I am supposed to be acting as if I am not vaccinated, which means no indoor dining. While summer is the time that I normally catch up with teacher friends and former students, we are relegated to outdoor visits only, which can’t happen during the sweltering weather here in NJ. So this year, I am taking the whole heat intolerance thing a lot harder than I normally do, because I am feeling isolated yet again. And to make matters worse, 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 means I can 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 about it this year because I have been isolating so much, and missing seeing some of my favorite people. I am just hoping that somehow we get a more temperate summer so that I can enjoy some time outdoors (with or without loved ones), 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 incredibly 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.
(RIP, Sarah.)