I left my last post off in stating I would talk about what I'm doing for myself to help myself through chronic illness. I promise I will get to that. For now, however, this thought came to me and I feel it is much more important.
Adding the vertical line
Have you ever been so excited about something coming up? I mean really, really excited? You anticipated a day, a date, an event, even a gift, that was going to be just oh so awesome? And then after doing it or receiving you, you were just a bit let down, maybe even really let down? I think we've all been there. Why does that happen? Why was something that was supposed to be so amazing, just, well, not so amazing?
The power of the mind. Your mind made that thing or date out to be much more than it was. You created that excitement, that anticipation, that forecast of a memory not yet made. Imagine that. You got so excited for something that didn't yet exist. That sounds like the mind can be quite powerful.
We do this in reverse much more than we do it in the way I just described. Take for example, chronic illness. We often look ahead thinking this stinks, how are we going to live however many more years like this, I don't want to spend all my days in bed, who would ever date someone with chronic illness, I can never do anything fun, so on and so forth. Where is that coming from? It's not reality. It hasn't yet existed, or happened. It's coming from our mind. We are creating it.
So if seen in those previous examples we have both the power to create something great, or the power to create something horrible, why would we choose to create something horrible over something great? Don't.
In the worldly sense, we are humans and we are walking through life. Walking. A straight line. What is a straight line? Well, it looks like a negative sign, or many of them. ---- You will encounter problem, after problem, after problem. It's a given, as I mentioned in my last post. I suppose you can look at that as a bunch of negative signs as well. So how do you make a positive?
All it takes is a straight line, going up. A vertical line. Turn that negative into a positive.
And then you have a positive sign, in literal terms. But what is a straight line going up? Up. Up is where God is. Thus, by adding that vertical line, you are making a connection with God. All those negatives, that straight line you are walking in life... they all become positives. You have connection to the only higher being to get you through it.
The mind is such a powerful thing. If we focus our mind on God, who is limitless, think about what our mind can do. Think about what we can do. Think about what we can do through Him who gives us strength... and healing, and protection. Think on these things and walk in that direction.
Yeah your future might not be what you imagined, especially if you were recently hit with something like chronic illness, loss of a loved one, divorce, financial troubles, etc. But if you stop walking just in the negative and add that vertical line, that connection to Christ... even though your life won't be what you imagined, maybe just maybe, it will be so so much better.
Turn that negative into a positive. We don't know what's forward, but we do know what's up. Stay connected and no matter what you face He will be there to get you through.
God bless.
Friday, January 31, 2014
Monday, January 27, 2014
Not just MG
When you think about someone with a chronic illness, for example MG, what do you think? Well, that they have MG. But often, other diagnoses come along with that, sometimes many many many other diagnoses. And that really complicates things. MG is tough by itself, but add other things to it, especially ones that contradict treatment, and it can become a real mess. Sometimes people will say "oh well I know someone with MG who is doing just fine." Again, we are all different. But on top of that, do they have "just MG" or do they have more than that? My guess is probably "just MG" and possibly maybe one other thing that is not so serious. So keep that in mind. Many of us are trying to fight multiple diagnoses at the same time and it's not such a cake walk. We speak of MG (or whatever chronic illness we have) first/most because it's most serious and/or the rarest and needs awareness and/or what is currently the biggest struggle.
As time goes on, the full scope of my health is being laid out. This took many years and many misdiagnoses, but I now have a pretty good idea of what all I have. Hopefully no more gets added to that list. So for now I'm going to take a moment to share what is going on 1. as an update to any family/friends who read my blog to stay informed specifically on how I'm doing and 2. as awareness and educating in demonstrating how health problems don't mesh together and makes it all the more difficult to navigate.
Here's my list of diagnoses proven through multiple tests/treatments/response/etc:
Myasthenia Gravis (MG)
Dysautonomia and specifically P.O.T.S.
chronic/recurrent Epstein Barr Virus
Immune Deficiency in what fights off pneumonia, strep, sinus and ear infections
blood clot disorder
back problem
And these are diagnoses not proven but assumed to be part of the problem:
MAST cell activation problem
Candida
Adrenal fatigue
So what do we make of all this?
Well MG is the most serious and if you haven't already, read all about it on the page tabs above. In short, the more I use my muscles, the faster they stop working for me. This includes not only arms and legs but breathing, swallowing, seeing, voice... things you don't typically think of using muscles but you do. This is why I may look totally "normal" when you see me but if you keep watching and I keep going, I will get weaker and weaker. If I get too weak, I land in the hospital and there is the risk of needing a ventilator to breathe. There are a large number of medications that make MG worse, including common antibiotics, reflux meds, pain meds as well as many medications used to treat...
Dysautonomia/POTS- treatment and medications for MG and POTS can be very different which makes it very hard. Dysautonomia/POTS affects your entire autonomic nervous system- breathing, heart rate, blood pressure, digestion, vision, temperature, so on and so forth... your whole body gone haywire, whenever it wants without warning. Standing in one place is not an option for me because of blood pooling, nausea and tachycardia of POTS, yet walking fatigues me because of the MG.
Epstein Barr Virus- well you've all heard of mono. Apparently I at one point, unknown to me, got mono... but it didn't go away and stay away like it does for most. So basically it's like I feel like I have mono over and over and over and over. Try doing anything when you have mono. Now imagine feeling like that pretty much every single day. I never know whether its the chronic EBV, MG or POTS, but that's how I feel. This is also known to possibly bring on both MG and POTS, so this may have been part of what set it off, along with the pneumonia.
Speaking of pneumonia- I just recently found out I have a deficiency in what protects people against pneumonia as well as strep, sinus infections and ear infections. My body doesn't fight like it should fight and therefore I can very easily catch any of these things. Thus, very very important I stay away from anyone who is sick. If I were to get sick with anything, it would set off the MG and POTS worse. A cold to someone else is a trip to the hospital for me. I could get the pneumonia vaccine but there is no guarantee it will prevent me from getting it and it puts me at risk because of the serious side effects I and many other MG/POTS patients tend to get. I've been really back and forth about the decision on this.
Blood clot disorder- I found this out after all the testing they did following my pulmonary embolism. What this means is I am more likely to develop blood clots than "normal people." It is not one of the most serious ones so I do not have to be on blood thinners for life, but I do need to give myself shots on any trip more than 2 hours. Not fun. What this means in regards to MG and POTS is I really should avoid IVIG, a common treatment used. Also, plasmapheresis is more of a risk for me because of the central line into the neck/chest and risk of clots through that line.
Back problem- well this was something I was apparently born with. I have a physical problem with my lower back and also scoliosis. This could be playing a part into everything because if muscles aren't strong enough, my back has to do things in a weird way, and then if my back does things in a weird way it could make my muscles work harder. When my lower back problem flairs up it is the most painful thing and I can't do anything but lay flat and not move. Because of the MG and POTS I can't take much of any pain killers.
MAST cell activation problem- one I am still learning about and don't fully yet understand. This could explain my extreme sensitivities to everything- medications, scents, fumes, allergens, foods, etc. Basically something that has to do with histamine in your body isn't working properly and reacts to many many things as allergens bringing on all the allergy symptoms with worse case being anaphylaxis. I was given an epi-pen but hope to God I never have to use it. The amount of kleenex I go through is insane. This is being treated with two types of histamine blockers but I still have to stay away from any triggers, which are many many.
And then there is the most likely Candida and Adrenal Fatigue which basically long story short, my body is in a constant battle to exist.
So with all that listed, do you see how it can become extremely complicated to treat any one of the multiple things I have? And many with chronic illness have it even more complicated. MG has no cure. Remission is possible but not very common, and even remission it does not mean perfect- it means better/able to do a little more. Dysautonomia/POTS doesn't specifically have a cure but some (typically those diagnosed as kids/teens) can reverse it. Chronic EBV well no one really knows much about that and apparently there really aren't even any medications to help it. Blood clot disorder- no cure/reversal. This is why it is called chronic. These things don't end. This is why, right now, I'm pretty much not receiving much of any treatment. There isn't much that can be done. This is why I'm not any better. This is my life. So I've taken it into my own hands in a way. What can I do for myself? I'll answer that in my next blog post.
Thanks for reading... glad my brain returned to allow me to write again. :)
Friday, January 24, 2014
Snowflakes stick together
I hit a bump in the road with writing. The other day I tried to write, and I wasn't happy with what came out, so I left it as a draft and continued on with my day. I haven't been able to come up with anything to say, hey that's a first, right? But then just now I read a message from a dear friend who encouraged me to get writing again. She always reminds me when she helps me to thank God and that all the glory goes to Him, so I kind of saw that as a nudge from God, through her, that I need to write. So here I am.
Today the MG community lost another one. I didn't know him personally but he was one of "us"- one of us MGers who so very much need awareness of how serious this disease is and prayers for a cure before more lives are taken by it. In fact, the friend I'm referring to who encouraged me to write again is an MG friend. Most of us with MG have never met, yet have grown so incredibly close. We were brought together because of this horrible disease, but we stay together because of the support and friendship we provide for one another. So when one of us is lost, it touches us all. May God rest his soul and bring peace to his family and friends.
Myasthenia Gravis is serious. Myasthenia Gravis can be deadly. People think because we look fine and even at time appear to physically be fine, we are fine. This disease is unlike any other. Someone can be laughing or working one minute and an hour later, gone. Snowflake disease. Every one of us is different. No two snowflakes are alike. Our symptoms are different, our treatments are different, our response to treatments are different, our bodies are different, our lives are different. A single snowflake is weak alone, but come together with many snowflakes and created is a beautiful covering of snow, or a snowman, or an avalanche. We stick together- to create awareness, to provide support and prayers, to help and teach one another, and for friendship.
Many of us cannot get out often because of MG or another one of the illnesses we have as many of us have more than "just MG". People often laugh at the thought of "online friend" or "facebook friend" or think of facebook as a joke in general- a place to waste time. Well many of us with MG find it a huge blessing. It has connected us who wouldn't be connected otherwise. We've gotten to know one another and we grow together. We provide support more than just MG. We are there for one another when someone is going through a rough time in their personal life, we pray together during the struggles, we make known when one of us is hospitalized or undergoing plasmapheresis or a thymectomy, we even send cards and gifts to one another. It is a second family, our MG family. And to every one who is a part of it- thank you and I care about you.
To anyone who doesn't have MG, thank you also, for reading this and other MG material to learn about it and educate yourself on a rare illness. It's best to educate yourself through those who actually have MG. Unfortunately, much of what is put out there through research and the medical professionals isn't always completely true. We've all read about how those with MG are expected to live a fairly normal life. We are appauled by that. Yes, there is the rarity and God bless them that they can, but many many many of us cannot. We cannot work, we cannot exercise, we cannot always drive, go to the store, clean, do laundry, or prepare meals. And we definitely cannot do it as quickly or with little effort. It takes a lot of time, a lot of effort, and the more we use any muscle the more at risk we put ourselves. Muscles include those involved with breathing and swallowing too.
Realize we are different because we don't have much of a choice, but we try to embrace those differences. We try to do what we can when we can and the best that we can. We learn different things and different ways of doing those things. We find new interests. We unfortunately lose many friends, even family, but we make new ones too. We don't want pity, we want empathy, love and support. And we definitely want awareness with the hope for a cure.
I had no idea I would get MG and I'm guessing anyone who has yet to be diagnosed has no idea they will either. It can happen to anyone at any time, and it's a very serious illness. We have our MG family but we still need our real family and friends too. So don't leave us when times get tough, help us through it. You never know if/when the tables will turn and if they do, you don't want to be left all alone while everyone walks away.
This post really has no single point, just like the last one I wrote but then never posted. But this one I'm going to post anyways because maybe there is something in here for someone, somewhere, I don't know. I do want those with MG to know you are not alone. If you are new to MG or you don't go on facebook or can't attend in person support groups, feel free to reach out to me. You can post a comment and just write on there "private" and it won't get posted publicly. Leave your email address and I'd be happy to contact you and direct you to any resources I can help you find. Snowflakes stick together. God bless.
Today the MG community lost another one. I didn't know him personally but he was one of "us"- one of us MGers who so very much need awareness of how serious this disease is and prayers for a cure before more lives are taken by it. In fact, the friend I'm referring to who encouraged me to write again is an MG friend. Most of us with MG have never met, yet have grown so incredibly close. We were brought together because of this horrible disease, but we stay together because of the support and friendship we provide for one another. So when one of us is lost, it touches us all. May God rest his soul and bring peace to his family and friends.
Myasthenia Gravis is serious. Myasthenia Gravis can be deadly. People think because we look fine and even at time appear to physically be fine, we are fine. This disease is unlike any other. Someone can be laughing or working one minute and an hour later, gone. Snowflake disease. Every one of us is different. No two snowflakes are alike. Our symptoms are different, our treatments are different, our response to treatments are different, our bodies are different, our lives are different. A single snowflake is weak alone, but come together with many snowflakes and created is a beautiful covering of snow, or a snowman, or an avalanche. We stick together- to create awareness, to provide support and prayers, to help and teach one another, and for friendship.
Many of us cannot get out often because of MG or another one of the illnesses we have as many of us have more than "just MG". People often laugh at the thought of "online friend" or "facebook friend" or think of facebook as a joke in general- a place to waste time. Well many of us with MG find it a huge blessing. It has connected us who wouldn't be connected otherwise. We've gotten to know one another and we grow together. We provide support more than just MG. We are there for one another when someone is going through a rough time in their personal life, we pray together during the struggles, we make known when one of us is hospitalized or undergoing plasmapheresis or a thymectomy, we even send cards and gifts to one another. It is a second family, our MG family. And to every one who is a part of it- thank you and I care about you.
To anyone who doesn't have MG, thank you also, for reading this and other MG material to learn about it and educate yourself on a rare illness. It's best to educate yourself through those who actually have MG. Unfortunately, much of what is put out there through research and the medical professionals isn't always completely true. We've all read about how those with MG are expected to live a fairly normal life. We are appauled by that. Yes, there is the rarity and God bless them that they can, but many many many of us cannot. We cannot work, we cannot exercise, we cannot always drive, go to the store, clean, do laundry, or prepare meals. And we definitely cannot do it as quickly or with little effort. It takes a lot of time, a lot of effort, and the more we use any muscle the more at risk we put ourselves. Muscles include those involved with breathing and swallowing too.
Realize we are different because we don't have much of a choice, but we try to embrace those differences. We try to do what we can when we can and the best that we can. We learn different things and different ways of doing those things. We find new interests. We unfortunately lose many friends, even family, but we make new ones too. We don't want pity, we want empathy, love and support. And we definitely want awareness with the hope for a cure.
I had no idea I would get MG and I'm guessing anyone who has yet to be diagnosed has no idea they will either. It can happen to anyone at any time, and it's a very serious illness. We have our MG family but we still need our real family and friends too. So don't leave us when times get tough, help us through it. You never know if/when the tables will turn and if they do, you don't want to be left all alone while everyone walks away.
This post really has no single point, just like the last one I wrote but then never posted. But this one I'm going to post anyways because maybe there is something in here for someone, somewhere, I don't know. I do want those with MG to know you are not alone. If you are new to MG or you don't go on facebook or can't attend in person support groups, feel free to reach out to me. You can post a comment and just write on there "private" and it won't get posted publicly. Leave your email address and I'd be happy to contact you and direct you to any resources I can help you find. Snowflakes stick together. God bless.
Friday, January 17, 2014
Double Standards Round 3
To the person who left me a very rude, judgmental and ignorant comment that is not going to get the pleasure of seeing it posted:
Let's clarify something here.
No where did I say I want to hear myself. That doesn't even make sense.
No where did I say I don't want to hear anyone else. Clearly if I wanted that I would walk around with ear plugs.
Thanks for your twist on my words though.
What I was discussing is CHRONIC complaining. Those people who can't seem to say ANYTHING positive. Every other word out of their mouth is bad mouthing this or that, him or her, you, me, anyone, anything. Uplifting, positive words? Not found. I was not referring to a random complaint here and there. I was not referring to serious situations where venting is much needed and helpful.
The circle of people I see or hear from on a regular basis is quite small due to my inability to get out often, so it was nice of you to possibly make an assumption that maybe I was referring to you, and if you think you fall into that category then maybe you do need to read that post again. But especially unless I see/hear from you on a regular basis, as I mentioned in the very beginning of that post, don't take what I'm saying as a direct attack but rather a topic of self-reflection. I stand by that.
For further explanation, let me try to explain something. I read this somewhere at some point. I tried to find it to post the link to it but I can't find it. So this is no credit to me, this goes to whoever wrote this marvelous idea, but I can't find them. I'll try to explain the best I can.
Imagine a little circle. Now imagine another circle around it. And another. And another. So on and so forth.
For purpose of explaining this I am going to use an example of a friend of mine dying from cancer in the middle/center/inner circle. It is their circle because we are referring to their life in this example. Now that person is allowed to vent/complain/whatever you want to call it about anything to anyone in an outer circle. How do you know if you are in an outer circle? Are your CURRENT life problems in general possibly less serious than theirs at that CURRENT moment? If so you are in an outer circle. Let them vent away. So I'll say I'm in the next circle because I am family or a friend. They can say whatever they want to me. I can talk to them, share with them, whatever... but I cannot complain about my "little" issues compared to theirs. They are dealing with SO much they don't need to be burdened with my less serious problems. Who can I vent/complain to? Those in an outer circle- my own family/friends who at that CURRENT moment are dealing with less serious issues than my own. Again, then they don't burden me with their "little" issues but they go to an outer circle as well. See how this works? I'm not explaining it nearly as good as this other person explained it but hopefully I'm getting the point across. These circles can change places at any such time depending on life's occurrences. So that venting may be exchanged between friends quite often if need be.
EVERYONE has issues they are dealing with. The goal is to vent/complain your issues/problems to those with less serious ones than your own CURRENTLY so not to burden someone who is already burdened more than you are.
Now, for more clarification, I do not mean to not DISCUSS things. I mean not to complain about "little" things less serious than whats in the inner circle... perhaps the weather, your job that you have and they don't, the insurance that you have and they don't, driving in traffic when they are stuck in a bed, etc. And I do not mean not to talk/vent with those in the same/similar situation. That can be of huge help to both parties involved.
It's not the occasional complaint or the serious life issue that needs to be discussed. It's the CHRONIC complaining I'm referring to. The people who just seem to reek with negativity with no positive anything in site. Those people are hard to be around for anyone, let alone if you have a chronic illness and need all the energy you can just for living, not burdened by negativity and complaints. That negativity just grabs you and pulls you in and it's hard to get out.
The other thing was that the main idea of my last post was double standards. It wasn't saying I can complain and you cannot. It was the fact that I am made to feel as if I cannot complain but that you are entitled to it- "you" referring to any chronic complainers or harsh criticizers. These are the people who are no where to be found when I am positive, but creep out of every crack to attack me if I say the slightest thing negative. These are the people who are out and about with me if I feel healthy and can do everything myself, but in deep hiding when I'm at my weakest and need them the most. It was all about double standards.
So I hope that clarifies what my intent of the last post was. And if not, hey no one is making you read this. Feel free to "delete" me from your life like so many already have. Those who have a big, true, kind heart will be there til the end, that I am certain of.
Thanks for reading. And thanks for all those who don't judge my every word, twist it, attack me, hurt me and then repeat it all again. Thanks for all those with such kind hearts that no matter what I go through, no matter what I say or do, no matter how my words come out and possibly taken in a wrong way, are still there for me... encouraging me, praying for me, spending time with me even if it's just messaging me. I sincerely appreciate you. I need to be surrounded by positive people and you make that happen.
Let's clarify something here.
No where did I say I want to hear myself. That doesn't even make sense.
No where did I say I don't want to hear anyone else. Clearly if I wanted that I would walk around with ear plugs.
Thanks for your twist on my words though.
What I was discussing is CHRONIC complaining. Those people who can't seem to say ANYTHING positive. Every other word out of their mouth is bad mouthing this or that, him or her, you, me, anyone, anything. Uplifting, positive words? Not found. I was not referring to a random complaint here and there. I was not referring to serious situations where venting is much needed and helpful.
The circle of people I see or hear from on a regular basis is quite small due to my inability to get out often, so it was nice of you to possibly make an assumption that maybe I was referring to you, and if you think you fall into that category then maybe you do need to read that post again. But especially unless I see/hear from you on a regular basis, as I mentioned in the very beginning of that post, don't take what I'm saying as a direct attack but rather a topic of self-reflection. I stand by that.
For further explanation, let me try to explain something. I read this somewhere at some point. I tried to find it to post the link to it but I can't find it. So this is no credit to me, this goes to whoever wrote this marvelous idea, but I can't find them. I'll try to explain the best I can.
Imagine a little circle. Now imagine another circle around it. And another. And another. So on and so forth.
For purpose of explaining this I am going to use an example of a friend of mine dying from cancer in the middle/center/inner circle. It is their circle because we are referring to their life in this example. Now that person is allowed to vent/complain/whatever you want to call it about anything to anyone in an outer circle. How do you know if you are in an outer circle? Are your CURRENT life problems in general possibly less serious than theirs at that CURRENT moment? If so you are in an outer circle. Let them vent away. So I'll say I'm in the next circle because I am family or a friend. They can say whatever they want to me. I can talk to them, share with them, whatever... but I cannot complain about my "little" issues compared to theirs. They are dealing with SO much they don't need to be burdened with my less serious problems. Who can I vent/complain to? Those in an outer circle- my own family/friends who at that CURRENT moment are dealing with less serious issues than my own. Again, then they don't burden me with their "little" issues but they go to an outer circle as well. See how this works? I'm not explaining it nearly as good as this other person explained it but hopefully I'm getting the point across. These circles can change places at any such time depending on life's occurrences. So that venting may be exchanged between friends quite often if need be.
EVERYONE has issues they are dealing with. The goal is to vent/complain your issues/problems to those with less serious ones than your own CURRENTLY so not to burden someone who is already burdened more than you are.
Now, for more clarification, I do not mean to not DISCUSS things. I mean not to complain about "little" things less serious than whats in the inner circle... perhaps the weather, your job that you have and they don't, the insurance that you have and they don't, driving in traffic when they are stuck in a bed, etc. And I do not mean not to talk/vent with those in the same/similar situation. That can be of huge help to both parties involved.
It's not the occasional complaint or the serious life issue that needs to be discussed. It's the CHRONIC complaining I'm referring to. The people who just seem to reek with negativity with no positive anything in site. Those people are hard to be around for anyone, let alone if you have a chronic illness and need all the energy you can just for living, not burdened by negativity and complaints. That negativity just grabs you and pulls you in and it's hard to get out.
The other thing was that the main idea of my last post was double standards. It wasn't saying I can complain and you cannot. It was the fact that I am made to feel as if I cannot complain but that you are entitled to it- "you" referring to any chronic complainers or harsh criticizers. These are the people who are no where to be found when I am positive, but creep out of every crack to attack me if I say the slightest thing negative. These are the people who are out and about with me if I feel healthy and can do everything myself, but in deep hiding when I'm at my weakest and need them the most. It was all about double standards.
So I hope that clarifies what my intent of the last post was. And if not, hey no one is making you read this. Feel free to "delete" me from your life like so many already have. Those who have a big, true, kind heart will be there til the end, that I am certain of.
Thanks for reading. And thanks for all those who don't judge my every word, twist it, attack me, hurt me and then repeat it all again. Thanks for all those with such kind hearts that no matter what I go through, no matter what I say or do, no matter how my words come out and possibly taken in a wrong way, are still there for me... encouraging me, praying for me, spending time with me even if it's just messaging me. I sincerely appreciate you. I need to be surrounded by positive people and you make that happen.
Thursday, January 16, 2014
Double Standards Round 2
Did I post that blog title before? I feel like I did. Regardless, something needs to be said here. Lately, I've been getting more and more annoyed which in return causes me to get more negative. I hate that I'm being influenced like that. I want to stay positive. But here's the thing...
By no means is this all inclusive ie. don't take it as a direct attack but rather a topic to use in self-reflection. Thank you.
Healthy people. Very often I hear complaint after complaint. You hate your job. You wish you made more money. How bad the economy is. You can't afford this or that. The cost of groceries went up. How stupid so and so is. The new policy put into affect. You have to pay more for insurance. The weather is horrible. You wish you could live somewhere else. You are soooo stressed. You have a cold. You have to sit and wait at the doctor's office. So on and so forth... it never ends.
Healthy people are "allowed" to speak negatively about whatever they please, and they aren't typically judged for it. It's seen as normal. Any of the above that happens seems to put such a horrible dent in their life, hey why not complain about it. Complain about everything. Life sucks right? Talk behind people's backs. Totally acceptable. Why not?
I'm being sarcastic if you haven't noticed.
Now, the chronically ill. Complaint. What? What's that? Were allowed to complain? News to us. We rarely even talk about any of the things mentioned above. Why? Because either 1. we don't have the privilege to experience it such as having a job, getting to go outside to even see what the weather is like, or going to the grocery store. or 2. we realize those things that most people complain about are absolutely useless to complain about. We only have so much energy and to direct it to something so pointless is well, pointless.
But what we do sometimes complain about, or rather, let's use the word vent... maybe our health, how we feel trapped inside a house or apartment or worse- one bedroom living with parents as an adult because we can't do things ourselves in order to live alone, our lost relationships because people abandon the chronically ill, how we almost or could have died due to a surgery, procedure or complication, and maybe about how we are expected to be oh so positive in an oh so negative situation while those in such positive situations are allowed to chronically be negative.
Double standard.
Those with chronic illness have so much more reason to complain than those who are healthy, putting all other circumstances aside for the moment. Furthermore, like I said if you replace complain with vent, those with chronic illness NEED to and SHOULD vent. Bottling things up inside is not good for anyone. So when we vent, don't see it as us being negative. See it as we are going through one heck of a lot, chronically, non-stop, never-ending. Just like perhaps the life of the healthy is focused on worldly things that we don't give as much energy to... our life is focused on, well, our life, because that's pretty much all we are given at times.
So if you are healthy, next time you start ranting or complaining about this or that... making fun of someone... how nothingggg goes right for you... how your above average income isn't enough... how you feel sick for a couple days... how you don't agree with someone or something... any of it... Why don't you instead see it as a blessing? Look at what you have. Look at what you are able to do. Look at how you can focus your attention on these things that really don't matter because you aren't forced to focus your attention on something more serious, like your life on the line. And then do some self-reflection and figure out if complaining about such pointless things is really worth your breath. Is it worth your breath if you knew you only had such amount of breaths left? After all we all only have such amount of breaths left... and we don't know what that number is. All I know is if my last one is coming, I want to make sure what I did leading up to that wasn't complaining.
And so I digress in my "complaining" which rather is actually venting... Let us vent in the midst of being so positive about something so negative.
We become a product of our environment. Make your environment a positive one, especially if you have someone with chronic illness living with you. They need that optimistic attitude surrounding them. Let them vent. But take your complaining elsewhere, and then keep it there. And realize how oh so blessed you really are to have oh so much to complain about.
The end.
By no means is this all inclusive ie. don't take it as a direct attack but rather a topic to use in self-reflection. Thank you.
Healthy people. Very often I hear complaint after complaint. You hate your job. You wish you made more money. How bad the economy is. You can't afford this or that. The cost of groceries went up. How stupid so and so is. The new policy put into affect. You have to pay more for insurance. The weather is horrible. You wish you could live somewhere else. You are soooo stressed. You have a cold. You have to sit and wait at the doctor's office. So on and so forth... it never ends.
Healthy people are "allowed" to speak negatively about whatever they please, and they aren't typically judged for it. It's seen as normal. Any of the above that happens seems to put such a horrible dent in their life, hey why not complain about it. Complain about everything. Life sucks right? Talk behind people's backs. Totally acceptable. Why not?
I'm being sarcastic if you haven't noticed.
Now, the chronically ill. Complaint. What? What's that? Were allowed to complain? News to us. We rarely even talk about any of the things mentioned above. Why? Because either 1. we don't have the privilege to experience it such as having a job, getting to go outside to even see what the weather is like, or going to the grocery store. or 2. we realize those things that most people complain about are absolutely useless to complain about. We only have so much energy and to direct it to something so pointless is well, pointless.
But what we do sometimes complain about, or rather, let's use the word vent... maybe our health, how we feel trapped inside a house or apartment or worse- one bedroom living with parents as an adult because we can't do things ourselves in order to live alone, our lost relationships because people abandon the chronically ill, how we almost or could have died due to a surgery, procedure or complication, and maybe about how we are expected to be oh so positive in an oh so negative situation while those in such positive situations are allowed to chronically be negative.
Double standard.
Those with chronic illness have so much more reason to complain than those who are healthy, putting all other circumstances aside for the moment. Furthermore, like I said if you replace complain with vent, those with chronic illness NEED to and SHOULD vent. Bottling things up inside is not good for anyone. So when we vent, don't see it as us being negative. See it as we are going through one heck of a lot, chronically, non-stop, never-ending. Just like perhaps the life of the healthy is focused on worldly things that we don't give as much energy to... our life is focused on, well, our life, because that's pretty much all we are given at times.
So if you are healthy, next time you start ranting or complaining about this or that... making fun of someone... how nothingggg goes right for you... how your above average income isn't enough... how you feel sick for a couple days... how you don't agree with someone or something... any of it... Why don't you instead see it as a blessing? Look at what you have. Look at what you are able to do. Look at how you can focus your attention on these things that really don't matter because you aren't forced to focus your attention on something more serious, like your life on the line. And then do some self-reflection and figure out if complaining about such pointless things is really worth your breath. Is it worth your breath if you knew you only had such amount of breaths left? After all we all only have such amount of breaths left... and we don't know what that number is. All I know is if my last one is coming, I want to make sure what I did leading up to that wasn't complaining.
And so I digress in my "complaining" which rather is actually venting... Let us vent in the midst of being so positive about something so negative.
We become a product of our environment. Make your environment a positive one, especially if you have someone with chronic illness living with you. They need that optimistic attitude surrounding them. Let them vent. But take your complaining elsewhere, and then keep it there. And realize how oh so blessed you really are to have oh so much to complain about.
The end.
Tuesday, January 14, 2014
In a cage
What's it like to watch everyone else around you live while you... well, can't? I wish I could say I don't know, but I do.
Imagine being confined to a bed. If that feels too relaxed for you, imagine you are handcuffed... no not in that way... Alright, imagine you are within a 2 by 2 foot jail cell... but that jail cell isn't inside a jail filled with other people also in cells. Your cell is in the middle of society. Like a bird in a cage... but you're a person, in a cage. Ok I think you get the idea now.
Being inside a cell or a cage, you can see out. You can see everything going on around you. You just can't participate. Imagine if you talk, if you laugh, if you do a little dance to make up your own fun- you get penalized, so, don't do it. Just sit there, in your little cage and be quiet.
Now watch as others run by you, drive by you, go to work, clean the house, prepare dinner, go to the movies, play with the kids, workout at the gym, make a long phone call, meet a friend out for drinks, go get a cup of coffee, go to a museum, go to school, play ball, go on dates, do laundry, eat whatever they want, attend a party....
Remember you can only watch, you can't participate. And then, guess what? You have to close your eyes. Now just sit there, unable to do or see anything.
This stinks. Soon you wish you could get out of that cage even if it was just to do the "boring" stuff like laundry, dishes, running errands. But you can't even do that. And no one tells you how long you are going to be in this cage. So you just have to sit, and somehow make the best of it.
We with MG often feel like this in some way or another. We are confined to rest because our muscles don't have enough in them to move. We have to reduce the amount of time we talk, or laugh, because even that wears down our muscles. When our eye muscles get weak, vision gets affected. All the while our family and friends and acquaintances and strangers carry on about their days like it's no big deal.
Don't get me wrong, we don't want to stop anyone from living their life or enjoying it... but we can't quite do the same. So when you tell us to stay positive, or we have a weaker moment, or we need to cry or vent... remember, we're dealing with a whole heck of a lot that you haven't experienced and it's ok to sometimes be sad about it.
At the same time, since we are trapped inside this cage, we may as well try to make the most of it. And so I go back to the beginning... watch everyone live their life, while you.. can't. But you can. It's not how you imagined, or want or would wish on anyone. But if you are breathing, you are living. So make the best of your moments inside that cage. Maybe you can read a book and teach yourself something new. Maybe you can use a laptop and communicate with others. Maybe you can deepen your relationship with God. Maybe you can inspire others... imagine that, someone trapped within a cage inspiring those who are able to run freely around it.
And if you are one of the ones able to run around it freely, don't take it forgranted, because at the moment you least expect it a cage could fall on top of you. And then what? What would you do without your job, without your spouse, without your ability to cook meals, without your ability to drive, without all those things you do for fun? What would you do if all you had was a body that didn't work?
Inside every body is a soul. Use it well and you can move a mountain... no muscle needed.
Imagine being confined to a bed. If that feels too relaxed for you, imagine you are handcuffed... no not in that way... Alright, imagine you are within a 2 by 2 foot jail cell... but that jail cell isn't inside a jail filled with other people also in cells. Your cell is in the middle of society. Like a bird in a cage... but you're a person, in a cage. Ok I think you get the idea now.
Being inside a cell or a cage, you can see out. You can see everything going on around you. You just can't participate. Imagine if you talk, if you laugh, if you do a little dance to make up your own fun- you get penalized, so, don't do it. Just sit there, in your little cage and be quiet.
Now watch as others run by you, drive by you, go to work, clean the house, prepare dinner, go to the movies, play with the kids, workout at the gym, make a long phone call, meet a friend out for drinks, go get a cup of coffee, go to a museum, go to school, play ball, go on dates, do laundry, eat whatever they want, attend a party....
Remember you can only watch, you can't participate. And then, guess what? You have to close your eyes. Now just sit there, unable to do or see anything.
This stinks. Soon you wish you could get out of that cage even if it was just to do the "boring" stuff like laundry, dishes, running errands. But you can't even do that. And no one tells you how long you are going to be in this cage. So you just have to sit, and somehow make the best of it.
We with MG often feel like this in some way or another. We are confined to rest because our muscles don't have enough in them to move. We have to reduce the amount of time we talk, or laugh, because even that wears down our muscles. When our eye muscles get weak, vision gets affected. All the while our family and friends and acquaintances and strangers carry on about their days like it's no big deal.
Don't get me wrong, we don't want to stop anyone from living their life or enjoying it... but we can't quite do the same. So when you tell us to stay positive, or we have a weaker moment, or we need to cry or vent... remember, we're dealing with a whole heck of a lot that you haven't experienced and it's ok to sometimes be sad about it.
At the same time, since we are trapped inside this cage, we may as well try to make the most of it. And so I go back to the beginning... watch everyone live their life, while you.. can't. But you can. It's not how you imagined, or want or would wish on anyone. But if you are breathing, you are living. So make the best of your moments inside that cage. Maybe you can read a book and teach yourself something new. Maybe you can use a laptop and communicate with others. Maybe you can deepen your relationship with God. Maybe you can inspire others... imagine that, someone trapped within a cage inspiring those who are able to run freely around it.
And if you are one of the ones able to run around it freely, don't take it forgranted, because at the moment you least expect it a cage could fall on top of you. And then what? What would you do without your job, without your spouse, without your ability to cook meals, without your ability to drive, without all those things you do for fun? What would you do if all you had was a body that didn't work?
Inside every body is a soul. Use it well and you can move a mountain... no muscle needed.
Tuesday, January 7, 2014
365 Blessings
A planner is used for planning. You write down in the different boxes/dates what is up ahead. It's a schedule of some sort to follow.
But we with MG, or POTS, or really any chronic illness, often can't plan... or we can try to plan and often have to scratch it out and try again. Whether our bodies are too weak, we don't want to risk getting sick, or we are trying to conserve energy and have to pick and choose- what's inside a planner or a calendar isn't what it used to be.
Often we can get down about this. Many times we wish we could still work, meet up with friends, go out every weekend, attend big parties, take big vacations. We might wish that planner was filled up like it used to be... that we could look at our calendar and say "no can't do that because I already have somewhere to be that day" as opposed to "probably not because I don't think my body will handle it" and leave yet another box on the calendar blank.
I have a solution.
Fill that planner, or calendar. Fill up every single day. Yes, every single day. But... don't fill it in advance. Here's what I want you to do instead:
At the end of each day, I want you to take that planner or calendar and write something in that box. The only rule is it has to be positive. It can be something fun you did that day, a prayer that was answered, something you accomplished, a moment you want to remember, a blessing you received or a blessing you gave. But there can't be anything negative about it.
Now do this every day for the entire year. On December 31st, before a new year comes, you can then look back at your planner... completely filled! But, filled not with appointments or plans that were crossed out... but filled with beautiful, positive memories and moments. 365 blessings, all your own.
We all often forget things. So a solution to that is to write it down. Well, I think we all often forget how blessed we are and how much we do still have regardless of how much has been lost. Same solution- write it down.
Life is what you make it... here's your opportunity to make it good.
But we with MG, or POTS, or really any chronic illness, often can't plan... or we can try to plan and often have to scratch it out and try again. Whether our bodies are too weak, we don't want to risk getting sick, or we are trying to conserve energy and have to pick and choose- what's inside a planner or a calendar isn't what it used to be.
Often we can get down about this. Many times we wish we could still work, meet up with friends, go out every weekend, attend big parties, take big vacations. We might wish that planner was filled up like it used to be... that we could look at our calendar and say "no can't do that because I already have somewhere to be that day" as opposed to "probably not because I don't think my body will handle it" and leave yet another box on the calendar blank.
I have a solution.
Fill that planner, or calendar. Fill up every single day. Yes, every single day. But... don't fill it in advance. Here's what I want you to do instead:
At the end of each day, I want you to take that planner or calendar and write something in that box. The only rule is it has to be positive. It can be something fun you did that day, a prayer that was answered, something you accomplished, a moment you want to remember, a blessing you received or a blessing you gave. But there can't be anything negative about it.
Now do this every day for the entire year. On December 31st, before a new year comes, you can then look back at your planner... completely filled! But, filled not with appointments or plans that were crossed out... but filled with beautiful, positive memories and moments. 365 blessings, all your own.
We all often forget things. So a solution to that is to write it down. Well, I think we all often forget how blessed we are and how much we do still have regardless of how much has been lost. Same solution- write it down.
Life is what you make it... here's your opportunity to make it good.
Saturday, January 4, 2014
A cold or a life threatened?
It's flu season. To many that means maybe a flu shot, maybe not. It means more kleenex, perhaps a couple days off work, not feeling good.
To those with MG, or POTS or many other chronic illnesses, especially immune system related it means worse. Much worse. It can mean the difference between life or death.
My guess is at least half of the people reading this just read that and thought "yeah right" or "she's exaggerating." Am I? No, not one bit. You don't have to believe me but I ask that you at least listen before you make up your mind on that. Please take a moment and read this full post. What I'm about to talk about will be specific to MG for the most part.
Some MGers and I were discussing what getting sick means to us, the already chronically sick... and it was suggested I write a post about it. I may have talked about this before, but it's a VERY important topic and especially important at this time of year.
First, our systems are already sick. Remember that. So if we "catch a cold" we are adding sick on top of sick. Second, many are on immune suppressant drugs. You may not know what that means since I didn't before MG, so I'll explain...
It's exactly how it sounds. Immune suppressant drugs are very powerful, usually pretty dangerous/can be very harmful (as in more at risk of cancer) drugs that suppress your immune system. Your immune system is what keeps you healthy, fighting off the bad stuff such as a cold or the flu. When you are on these drugs, you don't have that working for you. These drugs stop your immune system from working. You really don't have a defense then against a cold or the flu or anything including things much more serious. So every little germ is a risk... a HUGE risk.
Why would we take immune suppressant drugs then? Well if you had the choice of taking this risk with the chance of it helping you, or not taking it and struggling to breathe and move to the point of sometimes being bedridden or on a ventilator, what would you choose? We choose this choice because we don't really have a choice. Those who take these drugs have usually already tried just about everything else... less harmful medications and usually many different ones, IVIG, maybe plasmapheresis, and yes trying things "the natural way" too... and having none of it work or work well enough to allow us to function.
How then is an immune suppressant drug good for us? It's good because anyone with an auto-immune disease, like MG, has an immune system that isn't working right. In normal people the immune system fights off the bad stuff like I mentioned. With us, our bodies are fighting our own bodies! Constantly! Our bodies decided to see something inside us as a "bad thing" and fight it. There is a battle going on inside our bodies every second of every day that you can't see... but we can feel. So the immune suppressants say STOP! Stop fighting yourself!! And thus we can regain SOME normalcy in life... if the drugs work for us, if we don't get the serious side effects, and IF we don't get sick.
Yes there are many who are not on immune suppressants. I am one of them. This doesn't always mean it's because we are well enough to not go this route. In fact for myself, it's completely opposite. My doctors are scared to put me on an immune suppressant because of the risk and how sensitive my body is. But guess what else there is? Deficiencies. I just recently found out I have this. For me personally, I have a deficiency in the "stuff" that protects you against pneumonia, strep, sinus infections and ear infections. Well, hey, that explains a whole heck of a lot in regards to my getting pneumonia twice in my 20s! And then the constant circle of infections or misdiagnoses treated with antibiotics that landed me in the hospital numerous times... so on and so forth. So anyways, yes, some of us can have deficiencies of this nature. What does that mean? In simple terms, our bodies are doing the same thing they would do being on an immune suppressant. So go ahead and place us in that grouping as well.
And now you have left those who aren't on immune suppressants and don't have a deficiency. But you know what we do have? Bodies that are already physically weak due to our disease. Bodies that sometimes don't know which end is up with all the trial and error of medications and treatment. Bodies that have been through more in a few months than some people ever go through in a lifetime.
Add a "simple little cold" to any of that, and can you see how this can lead to the difference between life or death for us? No? Not yet? Well that simple little cold with a runny nose turns into a chest cold which quickly causes breathing trouble, head to the hospital, MG is affected as breathing is already compromised with MG, now we need plasmapheresis but oh no you're not supposed to get that if you are already sick, debate what to do but now it's too late, emergency need for a ventilator. You can take it from there. There are actual, real stories from real people with MG that have almost lost their life after exposure to one of these "little colds."
PLEASE help us prevent this from happening. PLEASE. Us with MG beg you to listen to us. We know you get tired of hearing it. We know it can be annoying. We know you sometimes question how sick we really are when we look healthy. We know you are confused when we are out and about one day and can't even answer a phone the next. We know you can never really understand unless you are in our shoes, and God forbid we don't ever want anyone else to have to go through this. But we need you to know that this is real, this is serious, and YOU can help us.
If you are sick, in any way, shape or form, as simple as a cough, the sniffles, a sore throat... anything... please stay away. We would love to see you but unless you provide a hazmat suit, it just can't happen until you are fully healthy. Understand we are always going to request this, and we have to. Understand that we are always going to ask and then ask again if anyone is sick before we come over or invite you and your family over. Understand that kids usually carry more germs and that's not to be mean, but us and kids have to be very careful together. Understand that if there is a party, yes we would LOVE if we could go but even if we by chance have the energy to go we still probably cannot because of the risk of germs. Understand that we have to give up so much and be so careful everywhere we go and this is not at all personal against you in any way.
And so again I bring up, many of us love to enjoy what we can do and appreciate when you are able to accommodate our needs... such as chatting online in order to maintain friendships in a way that won't get us sick, picking up items we may need from the store but can't risk it in flu season, hiding out if you yourself are sick especially if you live in the same house. And another thing many don't think of but can easily do... be proactive. If you don't have a chronic illness but know someone who does, especially if you live with them or see them often- take vitamin C, vitamin D, probiotics. Other things that sometimes have helped people- green tea, echinacea, Airborne, garlic, lemon. Notice these things are basically all natural, healthy things to do anyways. (Disclosure- do not take any of this as medical advise and always first talk to your doctor.) But really, just realize that our bodies don't work the way we wish they would and what is no big deal to you is a HUGE deal to us.
Thanks for reading and thanks for helping us not get sick on top of sick.
To those with MG, or POTS or many other chronic illnesses, especially immune system related it means worse. Much worse. It can mean the difference between life or death.
My guess is at least half of the people reading this just read that and thought "yeah right" or "she's exaggerating." Am I? No, not one bit. You don't have to believe me but I ask that you at least listen before you make up your mind on that. Please take a moment and read this full post. What I'm about to talk about will be specific to MG for the most part.
First, our systems are already sick. Remember that. So if we "catch a cold" we are adding sick on top of sick. Second, many are on immune suppressant drugs. You may not know what that means since I didn't before MG, so I'll explain...
It's exactly how it sounds. Immune suppressant drugs are very powerful, usually pretty dangerous/can be very harmful (as in more at risk of cancer) drugs that suppress your immune system. Your immune system is what keeps you healthy, fighting off the bad stuff such as a cold or the flu. When you are on these drugs, you don't have that working for you. These drugs stop your immune system from working. You really don't have a defense then against a cold or the flu or anything including things much more serious. So every little germ is a risk... a HUGE risk.
Why would we take immune suppressant drugs then? Well if you had the choice of taking this risk with the chance of it helping you, or not taking it and struggling to breathe and move to the point of sometimes being bedridden or on a ventilator, what would you choose? We choose this choice because we don't really have a choice. Those who take these drugs have usually already tried just about everything else... less harmful medications and usually many different ones, IVIG, maybe plasmapheresis, and yes trying things "the natural way" too... and having none of it work or work well enough to allow us to function.
How then is an immune suppressant drug good for us? It's good because anyone with an auto-immune disease, like MG, has an immune system that isn't working right. In normal people the immune system fights off the bad stuff like I mentioned. With us, our bodies are fighting our own bodies! Constantly! Our bodies decided to see something inside us as a "bad thing" and fight it. There is a battle going on inside our bodies every second of every day that you can't see... but we can feel. So the immune suppressants say STOP! Stop fighting yourself!! And thus we can regain SOME normalcy in life... if the drugs work for us, if we don't get the serious side effects, and IF we don't get sick.
Yes there are many who are not on immune suppressants. I am one of them. This doesn't always mean it's because we are well enough to not go this route. In fact for myself, it's completely opposite. My doctors are scared to put me on an immune suppressant because of the risk and how sensitive my body is. But guess what else there is? Deficiencies. I just recently found out I have this. For me personally, I have a deficiency in the "stuff" that protects you against pneumonia, strep, sinus infections and ear infections. Well, hey, that explains a whole heck of a lot in regards to my getting pneumonia twice in my 20s! And then the constant circle of infections or misdiagnoses treated with antibiotics that landed me in the hospital numerous times... so on and so forth. So anyways, yes, some of us can have deficiencies of this nature. What does that mean? In simple terms, our bodies are doing the same thing they would do being on an immune suppressant. So go ahead and place us in that grouping as well.
And now you have left those who aren't on immune suppressants and don't have a deficiency. But you know what we do have? Bodies that are already physically weak due to our disease. Bodies that sometimes don't know which end is up with all the trial and error of medications and treatment. Bodies that have been through more in a few months than some people ever go through in a lifetime.
Add a "simple little cold" to any of that, and can you see how this can lead to the difference between life or death for us? No? Not yet? Well that simple little cold with a runny nose turns into a chest cold which quickly causes breathing trouble, head to the hospital, MG is affected as breathing is already compromised with MG, now we need plasmapheresis but oh no you're not supposed to get that if you are already sick, debate what to do but now it's too late, emergency need for a ventilator. You can take it from there. There are actual, real stories from real people with MG that have almost lost their life after exposure to one of these "little colds."
PLEASE help us prevent this from happening. PLEASE. Us with MG beg you to listen to us. We know you get tired of hearing it. We know it can be annoying. We know you sometimes question how sick we really are when we look healthy. We know you are confused when we are out and about one day and can't even answer a phone the next. We know you can never really understand unless you are in our shoes, and God forbid we don't ever want anyone else to have to go through this. But we need you to know that this is real, this is serious, and YOU can help us.
If you are sick, in any way, shape or form, as simple as a cough, the sniffles, a sore throat... anything... please stay away. We would love to see you but unless you provide a hazmat suit, it just can't happen until you are fully healthy. Understand we are always going to request this, and we have to. Understand that we are always going to ask and then ask again if anyone is sick before we come over or invite you and your family over. Understand that kids usually carry more germs and that's not to be mean, but us and kids have to be very careful together. Understand that if there is a party, yes we would LOVE if we could go but even if we by chance have the energy to go we still probably cannot because of the risk of germs. Understand that we have to give up so much and be so careful everywhere we go and this is not at all personal against you in any way.
And so again I bring up, many of us love to enjoy what we can do and appreciate when you are able to accommodate our needs... such as chatting online in order to maintain friendships in a way that won't get us sick, picking up items we may need from the store but can't risk it in flu season, hiding out if you yourself are sick especially if you live in the same house. And another thing many don't think of but can easily do... be proactive. If you don't have a chronic illness but know someone who does, especially if you live with them or see them often- take vitamin C, vitamin D, probiotics. Other things that sometimes have helped people- green tea, echinacea, Airborne, garlic, lemon. Notice these things are basically all natural, healthy things to do anyways. (Disclosure- do not take any of this as medical advise and always first talk to your doctor.) But really, just realize that our bodies don't work the way we wish they would and what is no big deal to you is a HUGE deal to us.
Thanks for reading and thanks for helping us not get sick on top of sick.
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