I've been diagnosed with an incurable disease.
Several of them actually.
I have to live with these diseases the rest of my life, until it maybe takes my life.
But nothing has changed. I've been struggling through this for almost 5 years now. However, I recently discovered if you refer to chronic illness as incurable disease, people take you more seriously. And that's important, because it's very serious. It's life changing. It's quality of life declining. And sometimes it is life ending. And when you get that in your 20's, you have decades of it to not look forward to. I hate when people say "at least you are young." Really? I'd much rather have gotten sick when I was 80, or at least 60 or 50 even. Geeze, allow me to live my young adulthood at least. But no, instead I'm given multiple conditions, illnesses, incurable diseases, whatever you want to call them, at a young age. Treatment helps but doesn't cure. And treatment thus far on me has barely helped any. I'm one of those "lucky" ones.
I'm thinking I need to change the title of my blog because I'm not chronically cheerful, no one is. I try to be, but if I was positive and smiling 100% of the time I think there would be something even more seriously wrong with me.
I've been having some extremely down days. Part of it is because it's my first Christmas season divorced, realizing he's living his perfect little life now with his perfect healthy family. She replaced me when I wasn't good enough, couldn't do enough and couldn't provide what he wanted. That hurts. No matter how much time passes.
But the bigger thing at the moment is my MG is horrible. Worse than that is my lyme and bartonella are horrible. They are attacking me mentally. It's not something you can snap out of. It is a physical thing physically attacking the brain. It changes you. It makes you think, say and do things you don't want to. You get so angry. Fits of rage. Hatred. Sadness. What is even worse than this? No one seems to believe you or understand it unless they also suffer from it.
I have several incurable diseases. They attack me every second of my life, it never ends, all it does is change. This symptom, then that symptom, physical impairment then mental impairment then both. It's one heck of a horrible ride to be on.
I just want people to realize that even though I look fine, I'm not. I can't handle being accused, argued against or forgotten again. It hurts when people acknowledge me when I am positive but many go into hiding when I'm negative. It hurts when you cry out for help and still feel so alone. I need support, prayers and love more than ever right now. Thank you.
Sorry for such a downer post, but this is my life and I'm not going to edit it to appear to be someone I am not. I'm struggling.
Monday, December 22, 2014
Wednesday, December 17, 2014
The things you don't see
Friends and family see us out. We look fine. Therefore others mistakenly perceive that we are fine. That is so far from the truth and that is hard for us to explain over and over. With chronic illness, many times what you see is not what you get. Here is a little behind the scenes with chronic illness, the things you don't see or maybe don't realize the reason behind them:
-- laying in bed doing nothing for hours before and after "going out" in order to survive that outing (MG/POTS/Lyme/Adrenal/Candida)
-- taking hours to get ready not because we are high maintenance but because we actually need rest breaks while attempting to get ready (MG/POTS/Lyme/Adrenal/Candida)
-- scheduling things every other day or even every two days, including doctors appointments or trips to the store, in order to give our bodies a break from the "having to get ready" part of the day (MG/POTS/Lyme/Adrenal)
-- sitting in the back corner of church and trying not to shake hands so to do our best to avoid catching any germs (immune deficiency could be by itself or as a result of another illness)
-- needing, not wanting, but needing to avoid church, social outings, etc. because our bodies literally cannot do more than the minimum of just existing today (MG/POTS/Lyme/Adrenal/Candida)
-- holding a child or pouring a jug of milk means we might not be able to use our arms later or tomorrow or for a few days (MG)
-- our heart racing 180 beats per minute (when the average should be around 60), blood pressure dropping and blood pooling to our legs, just while standing and talking to you or waiting in line at a store, which causes all sorts of other symptoms and thus the need to rest and recover after those "simple" tasks (POTS)
-- waking up drenched in sweat and needing to open the window in the middle of the winter and get an ice pack, minutes later absolutely freezing with the chills, repeatedly through the night and sometimes day, every night, every day (POTS/Lyme/Bartonella)
-- waking up in the middle of the night with air hunger or partial diaphragm paralysis gasping for a breath of air (MG)
-- wearing a soft collar neck brace to support the muscles that hold up our head because they can't do it on their own (MG)
-- wearing a cold mask on our eyes so that they stay open enough to see you or to drive or to read (MG)
-- others in our home needing to avoid perfumes, lotions, hair sprays, certain cleaning products and detergents, etc. because they make us have a very bad flare up (Mast Cell which could be related to POTS/Lyme)
-- while on facebook "wasting time" as others assume, we are seeking and giving support to others in similar situations who have in fact become our closest friends from a distance (any illness)
-- laying in bed while on the computer in order to rest our arms so we can actually be on the computer (MG) and keep our legs up so we can be on the computer with out feeling lightheaded (POTS)
-- asking someone else to open cans, bottles, sometimes even the fridge door, doors to stores, carry things, pour something, cook for us, clean for us, go shopping for us, drive us, etc. (MG/POTS/Lyme/Adrenal)
-- crying, yelling, getting angry, and then getting frustrated that that happened because we cannot control it and feel like something is inside of us taking over and we hate it (Lyme/Bartonella)
-- our feet are burning up, so so hot and it's impossible to ignore (Bartonella)
-- we itch, constantly, all over (Candida)
-- that picture we were standing smiling in- we were in so. much. pain. (Lyme/back problems)
-- as you are socializing, we are overloaded with every movement, every color, every noise, every temperature and feeling. huge horrible sensory overload. (may be related to POTS and/or Lyme)
-- having to ask everyone we are about to see if they or anyone with them is sick prior to seeing them, or if they have cats/dogs, smoke, etc. because it will cause a huge flare up/we will get sick/can land us in the hospital (immune deficiency could be by itself or related to another illness)
-- checking out the layout of a place we are going, how far away parking is, where the closest bathroom is, how many seats are available before deciding if we can go (MG/POTS)
-- the extra cost of paying hundreds to thousands out of pocket for treatment because the doctors who treat it don't accept insurance due to the huge controversy (Lyme/Bartonella)
-- the extra cost of needing to eat clean/non-processed because of how processed foods as well as dairy, gluten, sugar, yeast flare up our symptoms badly (multiple illnesses)
-- sore throats, plugged ears, painful sinuses, swollen glands, swollen lymph nodes, distorted vision, weak muscles, nerve pain, joint pain, weak tendons, nausea, dizziness, lightheadedness, trouble breathing, trouble swallowing, constant ringing in the ears, etc. etc. etc. (multiple illnesses)
-- the times we don't take pictures- repeatedly in the hospital, on oxygen, some on a ventilator, getting stuck with needles over and over, central lines placed in our neck/chest, surgery, feeling so incredibly jailed inside our own bodies and yet still trying to walk through life staying positive and smiling (multiple illnesses)
-- when others tell us you're glad we are doing so well (when we aren't) or asking what we do all day, or why we aren't working (if we could we would), or recommending this that everything when you haven't walked in our shoes- it's probably the 1000th time we've had that said to us and it's very hard to hear over and over. We just want your support, a shoulder to lean on, an ear to listen, friend who won't accuse or demean us for something we cannot control. (multiple illnesses)
These are only a few of the many things you don't see. But I hope this helps you better understand the different accommodations we have to make and why we ask you to make them for us. I hope this helps you understand that life with chronic illness isn't relaxing in bed all day everyday. It's a constant battle, draining, exhausting, painful, lonesome and very very misunderstood. Thank you for doing anything you can do to help us fight this fight. We appreciate it so much and wish we could do more to give back.
-- laying in bed doing nothing for hours before and after "going out" in order to survive that outing (MG/POTS/Lyme/Adrenal/Candida)
-- taking hours to get ready not because we are high maintenance but because we actually need rest breaks while attempting to get ready (MG/POTS/Lyme/Adrenal/Candida)
-- scheduling things every other day or even every two days, including doctors appointments or trips to the store, in order to give our bodies a break from the "having to get ready" part of the day (MG/POTS/Lyme/Adrenal)
-- sitting in the back corner of church and trying not to shake hands so to do our best to avoid catching any germs (immune deficiency could be by itself or as a result of another illness)
-- needing, not wanting, but needing to avoid church, social outings, etc. because our bodies literally cannot do more than the minimum of just existing today (MG/POTS/Lyme/Adrenal/Candida)
-- holding a child or pouring a jug of milk means we might not be able to use our arms later or tomorrow or for a few days (MG)
-- our heart racing 180 beats per minute (when the average should be around 60), blood pressure dropping and blood pooling to our legs, just while standing and talking to you or waiting in line at a store, which causes all sorts of other symptoms and thus the need to rest and recover after those "simple" tasks (POTS)
-- waking up drenched in sweat and needing to open the window in the middle of the winter and get an ice pack, minutes later absolutely freezing with the chills, repeatedly through the night and sometimes day, every night, every day (POTS/Lyme/Bartonella)
-- waking up in the middle of the night with air hunger or partial diaphragm paralysis gasping for a breath of air (MG)
-- wearing a soft collar neck brace to support the muscles that hold up our head because they can't do it on their own (MG)
-- wearing a cold mask on our eyes so that they stay open enough to see you or to drive or to read (MG)
-- others in our home needing to avoid perfumes, lotions, hair sprays, certain cleaning products and detergents, etc. because they make us have a very bad flare up (Mast Cell which could be related to POTS/Lyme)
-- while on facebook "wasting time" as others assume, we are seeking and giving support to others in similar situations who have in fact become our closest friends from a distance (any illness)
-- laying in bed while on the computer in order to rest our arms so we can actually be on the computer (MG) and keep our legs up so we can be on the computer with out feeling lightheaded (POTS)
-- asking someone else to open cans, bottles, sometimes even the fridge door, doors to stores, carry things, pour something, cook for us, clean for us, go shopping for us, drive us, etc. (MG/POTS/Lyme/Adrenal)
-- crying, yelling, getting angry, and then getting frustrated that that happened because we cannot control it and feel like something is inside of us taking over and we hate it (Lyme/Bartonella)
-- our feet are burning up, so so hot and it's impossible to ignore (Bartonella)
-- we itch, constantly, all over (Candida)
-- that picture we were standing smiling in- we were in so. much. pain. (Lyme/back problems)
-- as you are socializing, we are overloaded with every movement, every color, every noise, every temperature and feeling. huge horrible sensory overload. (may be related to POTS and/or Lyme)
-- having to ask everyone we are about to see if they or anyone with them is sick prior to seeing them, or if they have cats/dogs, smoke, etc. because it will cause a huge flare up/we will get sick/can land us in the hospital (immune deficiency could be by itself or related to another illness)
-- checking out the layout of a place we are going, how far away parking is, where the closest bathroom is, how many seats are available before deciding if we can go (MG/POTS)
-- the extra cost of paying hundreds to thousands out of pocket for treatment because the doctors who treat it don't accept insurance due to the huge controversy (Lyme/Bartonella)
-- the extra cost of needing to eat clean/non-processed because of how processed foods as well as dairy, gluten, sugar, yeast flare up our symptoms badly (multiple illnesses)
-- sore throats, plugged ears, painful sinuses, swollen glands, swollen lymph nodes, distorted vision, weak muscles, nerve pain, joint pain, weak tendons, nausea, dizziness, lightheadedness, trouble breathing, trouble swallowing, constant ringing in the ears, etc. etc. etc. (multiple illnesses)
-- the times we don't take pictures- repeatedly in the hospital, on oxygen, some on a ventilator, getting stuck with needles over and over, central lines placed in our neck/chest, surgery, feeling so incredibly jailed inside our own bodies and yet still trying to walk through life staying positive and smiling (multiple illnesses)
-- when others tell us you're glad we are doing so well (when we aren't) or asking what we do all day, or why we aren't working (if we could we would), or recommending this that everything when you haven't walked in our shoes- it's probably the 1000th time we've had that said to us and it's very hard to hear over and over. We just want your support, a shoulder to lean on, an ear to listen, friend who won't accuse or demean us for something we cannot control. (multiple illnesses)
These are only a few of the many things you don't see. But I hope this helps you better understand the different accommodations we have to make and why we ask you to make them for us. I hope this helps you understand that life with chronic illness isn't relaxing in bed all day everyday. It's a constant battle, draining, exhausting, painful, lonesome and very very misunderstood. Thank you for doing anything you can do to help us fight this fight. We appreciate it so much and wish we could do more to give back.
Thursday, December 4, 2014
Hospital Update
Part way through 2014, I had a goal. Realizing I made it thus far without a trip to the hospital this calendar year, my goal was to make it the entire calendar year without. I realized this was mostly out of my control, but I was hopeful. It would have been the first calendar year since I don't even know, maybe since 2004? that I would have stayed out of the hospital completely.
I made it 11 months. November 30th, 2am. I woke up in the middle of the night with nearly unbearable stomach pains and nausea. I'll spare you the details but I remained awake severely sick through the night into the morning. Around 7am I just couldn't take it anymore and told my mom I need to go to the hospital. There was nothing left in me and I couldn't get anything to stay in me so in addition to the pain, nausea and sickness I was getting weaker by the minute. MG and POTS flare ups were just around the corner.
I was admitted and remained in the hospital for 3 days. My fever spiked, blood pressure dropped, head was hurting... but hey, with IV fluids IV zofran the stomach issue was improving. After about a day and a half I was able to slowly start eating again. Once my fever went down and food stayed in me, they sent me home.
So what landed me in the hospital? Well that's part of the problem. They are guessing it was a virus. Guessing. That's what aggravates me. They didn't do anything to find out what it was, nothing. All they did was make me stable. That's what aggravates me about the medical system in general. They want to drug you up and send you home. No thank you! I refuse pain medication and many other meds as much as possible. I don't want to mask my symptoms; I want to figure out the cause and treat it to the best of my ability! They did nothing to address the breathing issues that arose while I was there. And most concerning, my white blood cell count dropped drastically. Normal is typically above 4. When I was admitted it was 5.8. When I left it was 1.8! Your white blood cells are what protect you against infection. Mine are currently very low putting me at risk of catching anything. If they drop lower my own bacteria in my mouth can actually make me sick. That's insane. I want answers, not just an enormous bill for sleeping in an uncomfortable bed.
My MG and POTS are flaring now as that is what getting sick on top of sick does. I am weaker, vision unsteady, balance off, dizziness, lightheaded, still some come and go nausea, fatigued. Also, I had to stop my lyme meds since I couldn't keep anything in me so now I have this week off starting different meds for the lyme next week. So now my lyme is also flaring having nothing to keep it under control... joint pain, stiffness, brain fog, lyme rage/anger/mood swings. In addition I have a sore throat and don't know what that's stemming from.
So anyways, if in fact it was a virus that landed me in the hospital, this is what I often talk about. I must must must avoid people who are sick. My body does not fight things off like healthy people do. And when I catch something it affects me much stronger, risking other serious complications. I am thankful this stay was 3 days as opposed to my last stay of 6 weeks, but no hospital stay is fun or cheap. So please please if you are sick, don't be near me because it's a risk I cannot take. We with chronic illness really can't stress this enough and yet we often feel still people just don't quite understand or care to acknowledge that need unfortunately. I myself should probably do more to avoid this such as wearing a mask in public as I know some do but I haven't had the courage to do that quite yet. So many people don't even go out because of this. What I dealt with was extremely mild compared to what some others have had happen or what it could be. Bottom line: we cannot risk getting sick on top of sick.
Having chronic illness really is hard to deal with. It's hard when those around you don't understand that you look fairly normal but constantly feeling sick, constantly fighting inside your own body. It's hard when you get questioned and accused by doctors, friends and strangers. It's hard when you have to prove yourself because it's not outwardly visible. It's hard when you know it's never the end and it can always get worse, another hospital stay is years, months or days away. It's hard to realize THIS is your life and you can't exchange it for a new one. THIS is your body you are jailed within that prevents you from living life to the fullest you want to live it. It is extremely hard, feeling alone, isolated, down, defenseless, accused, attacked, forgotten.
So as I once again rest, I take a moment here to update those who care to be updated, but also a moment to say thank you. You, who are reading this, who care to know, who support and encourage me... you are the ones who help keep me going, who keep me wanting to fight the fight that never ends. Thank you especially to my parents who no matter how many days, weeks or months I am in the hospital, they are there. And when I'm not in the hospital they are still there, helping me whenever and however I need. They took me in when another threw me out. I don't know what I'd do if I didn't have them. And also another special shout out to someone I've grown so close to in a fairly short amount of time. Thank you for driving 2 hours just to come see me in the hospital. You are a bright light when my world goes dark. Your Godly encouragement, support and comfort have been such a blessing. To all who share my burdens and help keep me standing when the world beneath me crumbles, thank you.
I made it 11 months. November 30th, 2am. I woke up in the middle of the night with nearly unbearable stomach pains and nausea. I'll spare you the details but I remained awake severely sick through the night into the morning. Around 7am I just couldn't take it anymore and told my mom I need to go to the hospital. There was nothing left in me and I couldn't get anything to stay in me so in addition to the pain, nausea and sickness I was getting weaker by the minute. MG and POTS flare ups were just around the corner.
I was admitted and remained in the hospital for 3 days. My fever spiked, blood pressure dropped, head was hurting... but hey, with IV fluids IV zofran the stomach issue was improving. After about a day and a half I was able to slowly start eating again. Once my fever went down and food stayed in me, they sent me home.
So what landed me in the hospital? Well that's part of the problem. They are guessing it was a virus. Guessing. That's what aggravates me. They didn't do anything to find out what it was, nothing. All they did was make me stable. That's what aggravates me about the medical system in general. They want to drug you up and send you home. No thank you! I refuse pain medication and many other meds as much as possible. I don't want to mask my symptoms; I want to figure out the cause and treat it to the best of my ability! They did nothing to address the breathing issues that arose while I was there. And most concerning, my white blood cell count dropped drastically. Normal is typically above 4. When I was admitted it was 5.8. When I left it was 1.8! Your white blood cells are what protect you against infection. Mine are currently very low putting me at risk of catching anything. If they drop lower my own bacteria in my mouth can actually make me sick. That's insane. I want answers, not just an enormous bill for sleeping in an uncomfortable bed.
My MG and POTS are flaring now as that is what getting sick on top of sick does. I am weaker, vision unsteady, balance off, dizziness, lightheaded, still some come and go nausea, fatigued. Also, I had to stop my lyme meds since I couldn't keep anything in me so now I have this week off starting different meds for the lyme next week. So now my lyme is also flaring having nothing to keep it under control... joint pain, stiffness, brain fog, lyme rage/anger/mood swings. In addition I have a sore throat and don't know what that's stemming from.
So anyways, if in fact it was a virus that landed me in the hospital, this is what I often talk about. I must must must avoid people who are sick. My body does not fight things off like healthy people do. And when I catch something it affects me much stronger, risking other serious complications. I am thankful this stay was 3 days as opposed to my last stay of 6 weeks, but no hospital stay is fun or cheap. So please please if you are sick, don't be near me because it's a risk I cannot take. We with chronic illness really can't stress this enough and yet we often feel still people just don't quite understand or care to acknowledge that need unfortunately. I myself should probably do more to avoid this such as wearing a mask in public as I know some do but I haven't had the courage to do that quite yet. So many people don't even go out because of this. What I dealt with was extremely mild compared to what some others have had happen or what it could be. Bottom line: we cannot risk getting sick on top of sick.
Having chronic illness really is hard to deal with. It's hard when those around you don't understand that you look fairly normal but constantly feeling sick, constantly fighting inside your own body. It's hard when you get questioned and accused by doctors, friends and strangers. It's hard when you have to prove yourself because it's not outwardly visible. It's hard when you know it's never the end and it can always get worse, another hospital stay is years, months or days away. It's hard to realize THIS is your life and you can't exchange it for a new one. THIS is your body you are jailed within that prevents you from living life to the fullest you want to live it. It is extremely hard, feeling alone, isolated, down, defenseless, accused, attacked, forgotten.
So as I once again rest, I take a moment here to update those who care to be updated, but also a moment to say thank you. You, who are reading this, who care to know, who support and encourage me... you are the ones who help keep me going, who keep me wanting to fight the fight that never ends. Thank you especially to my parents who no matter how many days, weeks or months I am in the hospital, they are there. And when I'm not in the hospital they are still there, helping me whenever and however I need. They took me in when another threw me out. I don't know what I'd do if I didn't have them. And also another special shout out to someone I've grown so close to in a fairly short amount of time. Thank you for driving 2 hours just to come see me in the hospital. You are a bright light when my world goes dark. Your Godly encouragement, support and comfort have been such a blessing. To all who share my burdens and help keep me standing when the world beneath me crumbles, thank you.
Subscribe to:
Comments (Atom)