Disclaimer: If you are nearing Myasthenia Gravis crisis, get to the ER, immediately and don't even consider anything I'm about to say here. Again, nothing I say should be used as medical advice and I am not a medical professional, simply a patient with way too much experience.
Everyone knows about the risks involved with staying in the hospital... it is filled with sick people, so you risk catching something in addition to what you are there for. But that's not what I'm going to talk about today.
Home vs. Hospital: which is safer?
Myasthenia Gravis is a rare disease. POTS/dysautonomia is not rare but it is not commonly understood. Combine those two together along with other health problems and its a pretty good recipe for disaster.
There have been a countless number of times that my blood pressure drops way too low, my oxygen saturation gets into the 80s, I have no energy to even get out of bed, I feel like I'm about to pass out, my breathing is labored, I have difficulty swallowing, I can't walk. And yet, I have waited it out at home.
Why? Because I know that odds are I will immediately be written off as "just anxiety" as I get into the ER, even if MG and POTS are on my medical record, because next to no one understands these conditions. I will be given more radiation with a chest x-ray, because for some reason every time you go to the ER they just have to x-ray your chest. I've had pneumonia, I know this is not pneumonia, but they don't know until they make you pay for more radiation. Then the medications, oh the medications. This pill, that pill, every pill, for every symptom. My body does not do pills, period. Each pill I put into my body acts as poison so I try to stay far far away. And then the one pill that you need, at a specific time, just happens to never be available. But tell that to a nurse or doctor that doesn't know your history and you get written up as "non-compliant." Many many many medications can make MG go into crisis and can make POTS worse. There is a list and I have it, but doctors and nurses often like to ignore it.
The stress of being in a hospital is sometimes enough to put someone in crisis if you aren't already in crisis. You yourself have to watch every pill they try to give you, every IV that is hooked up and make sure there are not any big air bubbles. You are given the yellow wrist band which means fall risk and so you are confined to bed unless a nurse helps you. When you call for a nurse they are no where to be found and you get up to go to the bathroom and then get yelled at. They put a siren on your bed. So then you are forced to stay in bed and again more at risk for a blood clot. It seems, sometimes, in the hospital- you just can never win.
Plasmapheresis would help, but then I risk getting another pulmonary embolism or bleeding out. Oxygen would help but they won't send me home with it because they have to witness my ox sat drop below a different number at the exact moment they want to see it, it doesn't work that way. IV fluids would help, but even getting that ordered is sometimes next to impossible. And so, if I'm not struggling to take one of my could be last breaths, I just struggle on my own at home and wait it out. I rest. I increase my fluids. I don't eat if I'm having trouble swallowing. I don't walk if my blood pressure is so low I'm going to pass out. I just... wait.... and hope it doesn't get worse.
Finding a doctor who knows how to treat one of those is one heck of a mission. Finding a doctor who knows how to treat both... treat both well... let me know if you ever find that one. Even if you happen to find this doctor, it is not certain that this doctor will be at the closest hospital, doing rounds. Even if that does happen, will the nurses follow strictly what the doctor says? Will the prescriptions be there at the exact time you need them? Will the stress of having to manage your own care send you downhill quicker than if you just waited it out at home?
This is why awareness is SO very important. Doctors, nurses, pharmacists, nursing assistants, friends and family all need to be aware... to understand what MG is, what POTS is, what the symptoms are, how to treat it, and most importantly that each and every MG or POTS patient is different and what works for your last patient may actually be something that puts my life at risk.
Chronic illness needs to be chronically maintained. Family, friends and the medical team need to walk side by side through this entire ride, because what I'm going through is completely different than what another patient is going through. What I need for treatment may be completely different than what another needs for treatment. Because if you just hop on and hop off you just get a small glimpse, without the full history, and that's not enough to treat ME as an individual. Unfortunately, the medical industry doesn't have nor typically take the time to look at me as an individual on a case by case basis. And this puts me at risk. And so I come back to the question of which is safer? Home vs. the Hospital.
Let's make an effort to make that answer a clear "hospital." Let's make everyone with a chronic and/or rare illness feel comfortable that they can go to the hospital to get better, not get worse. Let's do that by spreading awareness. I'm sure most of you have jumped on the ice bucket challenge bandwagon, so now, jump on this. Spread awareness for everyone suffering from Myasthenia Gravis and POTS. We sincerely thank you!
Monday, August 25, 2014
Friday, August 22, 2014
Ice Bucket Challenge
By now, you most likely have heard about the ALS ice bucket challenge, and many of you have probably also participated in it. I have very mixed feelings on this.
Because I suffer from chronic illness myself, I understand the huge importance of donations as well as awareness. Part of me wishes someone would have thought of this for Myasthenia Gravis or for POTS.
The other part of me wonders, how many people who pour a bucket of ice water over their head are donating? How many are researching to learn about ALS? Are people doing the challenge because they want to help those suffering this horrible disease, or are they doing it to post a video of themselves to facebook? Is it really making a difference or is it another one of those things that will be forgotten about as a trend that comes in and fades out? I read that donations are way up, but I also read that a HUGE percentage of those donations do not benefit ALS patients as sadly happens with many organizations.
Please, if you want to donate to ALS, or any organization for that matter, do it! If you have the financial ability to give and the heart to do so, I absolutely encourage it. But I also encourage researching that disease, that organization, and maybe even getting to know some people who have it. Make it personal. Allow it to touch your life.
I will not be participating in the ice bucket challenge not only for the reasons stated above, but because it is dangerous for me. Specifically with POTS, our bodies don't typically regulate temperature well, and we are very sensitive to changes including temperature. I hope no one who does this challenge ends up sick or hospitalized because of doing it. I will not put my own health at risk, but I will donate to organizations that I feel called to donate to.
Today I saw a post on facebook from a fellow POTSie who bravely did the challenge, but with her own twist to it. She used this as an opportunity to educate people, and she now has over 1000 views. That is something that makes a difference. Donating is great, but educating yourself on what your friend or family member is suffering from sometimes can be even better. After all, we all- each and every human being on this earth, need support. Learning leads to understanding which can lead to support.
I encourage you to watch this in full. Please be warned she passes out and has a small seizure towards the end. These are only two of the many symptoms/things that can happen to POTS patients. Each POTS patient is different, as is also the case for each MG patient, and probably a majority of other chronic illnesses out there. We can never walk in another's shoes but we can become aware, educated, understanding and supportive.
I now make my call out to each one of you... go ahead and pour a bucket of ice water over your head if you feel you can safely do so and are compelled to. But more importantly, donate to ALS, to Dysautonomia International, to the Myasthenia Gravis Foundation of America, or to another organization of your choice. And next, spread awareness. Today I ask that you spread awareness of POTS, a chronic illness I suffer from, by sharing this video and/or this blog.
Thank you for reading and thank you to Ruth for allowing this to be shared.
Sunday, August 17, 2014
Walking is better than standing
Why can I go for a walk but I have trouble standing to worship at church?
Why can I shop but I can't wait to make the purchase if there is a long line?
Why can I play the wii but I can't stand in one place to talk to you?
The short and simple answer: POTS.
My doctor described it in the easiest way to understand:
When I'm standing all the blood pools to my legs. When the blood pools to my legs, that means there is not enough blood to reach vital organs or other parts of my body- my brain, heart, lungs, eyes, arms, etc. When these parts don't get enough blood, or oxygen even, I get dizzy, lightheaded, brain fog, nausea, blurry/cloudy vision, weak. BP drops, heart rate sky rockets, ox sat may drop. Many POTS patients pass out.
This happens while sitting too, because the legs are still lower than the rest of the body. This is why it's hard to do much of anything normal- socialize, sit in church, drive, go to the theater, eat at a restaurant, sit at a desk, work, etc.
Much of my day, and the days of others with POTS, is spent laying down. The best position for us is laying down, or legs raised. This allows the blood flow to be distributed more evenly throughout the body and allows us to last longer. This is why I sit in my bed and am on my computer a lot.
But back to the title of my post, why is walking better than standing?
That is because when I stand, like I said, all the blood pools and sits there and I near collapsing. When I am walking that force and contraction of the muscles pushes blood flow back up so I can last longer being upright. So if I am forced to stand in one place you will often see me shifting my weight a lot or basically walking in place to help myself.
Still I face another problem, and that is MG which fights opposite against this. The more I use a muscle, the weaker that muscle gets. That means the more I walk in place, the weaker I get. The more I use my eyes and arms on my computer, laying in bed, the weaker my eyes and arms get.
It's a constant battle of myself against myself and myself against getting through life. There is a need to adapt, be patient, be creative in what I do and how I do it, and accept that sometimes I just have to stop.
Walking is better than standing, but it's still not easy and neither is anything else in life for those with chronic illness. Every struggle we've faced and can look back on means we've overcome it. We must keep walking, because after all, standing in one place gets you nowhere.
Why can I shop but I can't wait to make the purchase if there is a long line?
Why can I play the wii but I can't stand in one place to talk to you?
The short and simple answer: POTS.
My doctor described it in the easiest way to understand:
When I'm standing all the blood pools to my legs. When the blood pools to my legs, that means there is not enough blood to reach vital organs or other parts of my body- my brain, heart, lungs, eyes, arms, etc. When these parts don't get enough blood, or oxygen even, I get dizzy, lightheaded, brain fog, nausea, blurry/cloudy vision, weak. BP drops, heart rate sky rockets, ox sat may drop. Many POTS patients pass out.
This happens while sitting too, because the legs are still lower than the rest of the body. This is why it's hard to do much of anything normal- socialize, sit in church, drive, go to the theater, eat at a restaurant, sit at a desk, work, etc.
Much of my day, and the days of others with POTS, is spent laying down. The best position for us is laying down, or legs raised. This allows the blood flow to be distributed more evenly throughout the body and allows us to last longer. This is why I sit in my bed and am on my computer a lot.
But back to the title of my post, why is walking better than standing?
That is because when I stand, like I said, all the blood pools and sits there and I near collapsing. When I am walking that force and contraction of the muscles pushes blood flow back up so I can last longer being upright. So if I am forced to stand in one place you will often see me shifting my weight a lot or basically walking in place to help myself.
Still I face another problem, and that is MG which fights opposite against this. The more I use a muscle, the weaker that muscle gets. That means the more I walk in place, the weaker I get. The more I use my eyes and arms on my computer, laying in bed, the weaker my eyes and arms get.
It's a constant battle of myself against myself and myself against getting through life. There is a need to adapt, be patient, be creative in what I do and how I do it, and accept that sometimes I just have to stop.
Walking is better than standing, but it's still not easy and neither is anything else in life for those with chronic illness. Every struggle we've faced and can look back on means we've overcome it. We must keep walking, because after all, standing in one place gets you nowhere.
Wednesday, August 6, 2014
When you hear the word Cancer
Cancer is serious, very serious. In no way, shape or form am I attempting to take away from that fact.
However, what I would like to do is make it clearly known that there are serious conditions out there besides cancer... or besides heart problems, being paralyzed or other often heard of medical conditions.
One reason you know cancer is so serious is because you probably know someone with it. Unfortunately, it's fairly common, for lack of a better word there. Another reason you know cancer is so serious is because of all the funding it gets, which is a result of how common it is and how many people need to be helped. Lastly, another reason you know cancer is so serious is because sadly, people are killed by it.
With cancer, there is a beginning and there is an end. If you are diagnosed you know you will need some sort of treatment or surgery to try to get rid of the cancer. If you get rid of the cancer, you can be considered cancer-free and perhaps go back to living a pretty normal life. Or, it hits you fast and hard or treatment doesn't work. One way or the other, cancer comes to an end.
Like I said, cancer is serious, very serious, and in no way am I attempting to take away from that. However, I would like to bring about awareness that there are health conditions out there that are also very serious, just as serious, as cancer is. And even those that may not be seen as quite as serious, can be extremely disabling and life-long life-changing. Myasthenia Gravis is both. I'm going to focus on that condition only for right now.
Myasthenia Gravis is extremely serious. However, it is extremely rare. Because it is rare, there is not a lot of funding and you do not hear much of anything about it, until you know someone who has it. Even looking on the internet, often information you find is misleading, very misleading, stating you can lead a fairly normal life with treatment. Well, first of all, that treatment has to work and for many including myself, it doesn't. That treatment causes serious complications and side effects which lead to further treatment and it becomes a cycle. This cycle is life-long. There is no end in sight. Every single day is a struggle and at any point in time it can be life-ending. But it doesn't necessarily lead to an end, just a battle, an every single day battle.
Those with Myasthenia Gravis go in and out of the hospital. We get central lines placed through our neck/chest. We have blood filtered out of us and back in us with donor plasma. We sometimes get placed on bi-pap machines or worse, a ventilator. We have surgeries. We take medications daily. Those medications cause serious side effects which can include hair loss and loss of protection against illnesses. We have to be very cautious about where we go and who we are around because our bodies cannot fight off illnesses like a healthy person's body can. We sometimes use walkers or wheel chairs. Some days we can't get out of bed, find it hard to swallow, difficult to breathe, too hard to lift our arms to wash our hair, vision too blurry to drive or read.
The thing is all of those things happen on and off, again and again and again. There is no start and end and that's that. It continues. It gets slightly better then it gets worse. We are never "normal." It continues. We face this battle every single second of every single day... regardless of if you can see it, regardless of if you hear about it, regardless of how rare it is, regardless of how much funding we get.
Myasthenia Gravis is not a condition in which you gradually get better or are "healed." It is life-long. It does not end. Treatments may help, but they may not, and there is no cure.
There are some people who have had cancer and also have Myasthenia Gravis and have said that they would prefer to have cancer. I know that is one hard thing to hear and swallow, because we know how serious cancer is. But that shows how also serious Myasthenia Gravis is and how difficult it is to live with hearing that cancer would be preferred over it. Don't judge what you don't know or haven't personally experienced.
Whether you have or know someone with Myasthenia Gravis or cancer... or POTS/dysautonomia, a heart condition, someone who is paralyzed, or someone who just is having a hard time in life right now... let's all extend one another a bit of grace. We each face our own struggles. Some are visible and some are not. Some end and some don't. Let's be supportive, not competitive or judgmental. Let's love and be loved. And let's stay focused on God, not on any health condition or obstacle that comes our way.
God bless.
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2-4
However, what I would like to do is make it clearly known that there are serious conditions out there besides cancer... or besides heart problems, being paralyzed or other often heard of medical conditions.
One reason you know cancer is so serious is because you probably know someone with it. Unfortunately, it's fairly common, for lack of a better word there. Another reason you know cancer is so serious is because of all the funding it gets, which is a result of how common it is and how many people need to be helped. Lastly, another reason you know cancer is so serious is because sadly, people are killed by it.
With cancer, there is a beginning and there is an end. If you are diagnosed you know you will need some sort of treatment or surgery to try to get rid of the cancer. If you get rid of the cancer, you can be considered cancer-free and perhaps go back to living a pretty normal life. Or, it hits you fast and hard or treatment doesn't work. One way or the other, cancer comes to an end.
Like I said, cancer is serious, very serious, and in no way am I attempting to take away from that. However, I would like to bring about awareness that there are health conditions out there that are also very serious, just as serious, as cancer is. And even those that may not be seen as quite as serious, can be extremely disabling and life-long life-changing. Myasthenia Gravis is both. I'm going to focus on that condition only for right now.
Myasthenia Gravis is extremely serious. However, it is extremely rare. Because it is rare, there is not a lot of funding and you do not hear much of anything about it, until you know someone who has it. Even looking on the internet, often information you find is misleading, very misleading, stating you can lead a fairly normal life with treatment. Well, first of all, that treatment has to work and for many including myself, it doesn't. That treatment causes serious complications and side effects which lead to further treatment and it becomes a cycle. This cycle is life-long. There is no end in sight. Every single day is a struggle and at any point in time it can be life-ending. But it doesn't necessarily lead to an end, just a battle, an every single day battle.
Those with Myasthenia Gravis go in and out of the hospital. We get central lines placed through our neck/chest. We have blood filtered out of us and back in us with donor plasma. We sometimes get placed on bi-pap machines or worse, a ventilator. We have surgeries. We take medications daily. Those medications cause serious side effects which can include hair loss and loss of protection against illnesses. We have to be very cautious about where we go and who we are around because our bodies cannot fight off illnesses like a healthy person's body can. We sometimes use walkers or wheel chairs. Some days we can't get out of bed, find it hard to swallow, difficult to breathe, too hard to lift our arms to wash our hair, vision too blurry to drive or read.
The thing is all of those things happen on and off, again and again and again. There is no start and end and that's that. It continues. It gets slightly better then it gets worse. We are never "normal." It continues. We face this battle every single second of every single day... regardless of if you can see it, regardless of if you hear about it, regardless of how rare it is, regardless of how much funding we get.
Myasthenia Gravis is not a condition in which you gradually get better or are "healed." It is life-long. It does not end. Treatments may help, but they may not, and there is no cure.
There are some people who have had cancer and also have Myasthenia Gravis and have said that they would prefer to have cancer. I know that is one hard thing to hear and swallow, because we know how serious cancer is. But that shows how also serious Myasthenia Gravis is and how difficult it is to live with hearing that cancer would be preferred over it. Don't judge what you don't know or haven't personally experienced.
Whether you have or know someone with Myasthenia Gravis or cancer... or POTS/dysautonomia, a heart condition, someone who is paralyzed, or someone who just is having a hard time in life right now... let's all extend one another a bit of grace. We each face our own struggles. Some are visible and some are not. Some end and some don't. Let's be supportive, not competitive or judgmental. Let's love and be loved. And let's stay focused on God, not on any health condition or obstacle that comes our way.
God bless.
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2-4
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