My fibromyalgia-related pain typically hangs out around a 3 on a 10-point scale. It's there, it's annoying, but it doesn't affect my ability to function. My cognitive ability and anxiety are typically the most affected as I struggle with memory, finding the right words and dealing with brain fog. However, there are times when I am reminded that fibro pain isn't just brought on by over-doing it, that it's also brought on by stress.
This weekend, I was reminded of that very thing when seemingly out of nowhere, Jaxson had three episodes we believe to be seizures. I was on high alert on Saturday after I witnessed one of the episodes, but I was so focused on watching Jaxson that I didn't pay attention to anything going on with me. Jeffrey was behaving amazingly well and spent some time outside with his friends, which was really helpful.
Then came Sunday. I woke up with a headache and my stomach in knots. Not overly nauseous, just queasy in the pit of my stomach. My body ached. Initially, I thought it was because on Friday evening, I went to Jaxson's school to help set up for the craft show they had on Saturday. Moving tables, lifting baskets, on my feet for a few hours. Stands to reason this could have impacted how I felt, and it may have been a contributing factor. I took a bath Sunday morning and rested all day. The time change always gets me, so I was pretty sleepy all day anyway.
I was hopeful that today would be better, but it isn't. My stomach is still in knots. My back aches. My hands are a little swollen and my fingers ache. As I type this I question what I was thinking when I started, but sometimes, getting everything out is more important than how my fingers might feel after I'm done. This is important to me, because I know that I'm not alone in this instance. I have many friends who are also fibro warriors as well as Kabuki moms. And it's important that we all band together and realize we are not alone, and we are not crazy.
The thing is, it's not just the seizures, which are new. The only seizures he's had before were febrile, and he had a one-off seizure several years ago. Nothing since then. That this is popping up now normally would just be typical additional stress, but there's been so much going on with Jaxson that my body finally said I had to stop. Over the summer we discovered that his bladder is incontinent and we were going to attempt a medicine to help him, but because he doesn't void all the way, that meant we'd also have to cath him. I did it once at home, and it was traumatizing for both of us, so we decided that right now isn't the time to start this. His Chiari may be causing sleep apnea, and he has obstructive sleep apnea as well. The obstructive part should be fixed next Friday when he has his tonsils and adenoids out, but then he will have to have another sleep study to see how bad his sleep apnea actually is. We're supposed to do that in January and follow up with neurosurgery in February. We will also have to follow up with craniofacial clinic around that time to determine when his VPD repair can take place (there's a gap in the back of his throat where extra air moves out when he talks). In December, he will have a heart echo and we will learn if he is due to have his mechanical mitral valve replaced. Plus trying to keep up on therapies and avoid him missing too much school for appointments and illnesses.
It's a lot. Having a child with special needs, no matter what those needs are, is a lot. We are fond of saying that the Kabuki life is not for the faint of heart, because it truly isn't. It takes a strong backbone, a strong sense of trusting your gut and being willing to open your mouth when something is amiss. It takes a lot of support from friends and family. And even with that, it takes a toll on the body. And when you have a chronic pain disorder, all of the stresses can add up to make a toxic mess.
One thing I'm still trying to learn is how to pace myself. How to listen to my body and adjust what I have to do during the day to make sure I not only accomplish things that need done, but also don't kill myself in the process. I'm learning that it's okay if I don't clean my house every day, if I stop for a few minutes and rest. It's not easy to look around my cluttered house and understand that today is not the day to clean it. But I'm learning. And that's just as important as recognition.
Taking baby steps is a common thing for me. I pick one task to do and get it done. Then see how I feel and if I can do more or if I need a break. Trying to learn the signs my body is giving me is hard, and even though I've been doing it for almost 2 years, there are still times I am unsure of how my body will react. Fibromyalgia is a cold, mean-spirited disease. It does not care what is going on in your life, only that it wants to show up at the worst possible times.
One thing I hope other moms can learn from this post is to stop and listen. If you're feeling overly anxious or having a bad pain day, stop and listen to your body. Do what you must to get through the day, but don't expect to be able to do it all. It's okay if your house is a mess. It's okay if the dishes and laundry are piled up. It's okay if you have to put something off until tomorrow. It's okay to not be okay. And it's okay to talk about it, to ask for help, to lean on someone. I certainly wouldn't be where I am if I was left to fend for myself. I have my amazing husband, my family and friends who are there to support me when I need it the most. I will be forever grateful to my village, my people. So please, don't think you have to be Wonder Woman to be a good mom or to be a good partner. You don't! No one is perfect, and no one should expect you to be perfect either. Trust yourself. Listen to your body. When you do these things, while it's hard to accept and sometimes even harder to do, your mental and physical health will be better for it.
I'll end with my quote, as it's especially fitting today.
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." ~Unknown
Monday, November 5, 2018
Friday, September 14, 2018
Special Needs Parenting and Anxiety, the Impact of Anxiety on Decision Making and More
The other day I wrote a blog titled, "Special Needs Parenting and Depression: It's Normal" and I have received rousing appreciation from everyone who has read it. I already planned to do a similar post regarding anxiety, so I hope this helps people as much as the previous blog.
Personally, I have battled anxiety since I was a child. The constant worrying about if I said the right thing, did the right thing, could have done or said something different that would have changed the outcome of a situation, the heightened heart rate, throwing up, headaches, etc. I've dealt with it for a long time. Prior to Jaxson being born, though, I was able to be medication free for a number of years. After he was born, I tried for a few months, but when his second surgery was scheduled, I went to the doctor for help. His first surgery happened while he was in the NICU, at 5 weeks old, when he had his feeding tube placed. His second surgery was when he was 4 months old, and it was a big one: reconstructive skull surgery. He was born with syndromic craniosynostosis. At birth, both of his coronal sutures were fused. He also had hydrocephalus and a Chiari I malformation (part of his brain pushed down into his brain stem). In order to fix his skull the first time, they literally cut out part of the back of his skull in a crescent moon shape. They replaced the bone that was cut, only put it farther back so as to create space for Jaxson's brain. It was terrifying, and I knew in advance what they would be doing, so I wasn't taking any chances. I went back on anxiety and depression meds to get me through.
Even so, with all of that, I could not stay with Jaxson his first night of recovery. It's probably my biggest regret with Jaxson, but at the time, it was what I needed. Jayson, my husband and father of both of my kids, stayed with him. Jaxson cried for 30 hours. I was throwing up in the bathroom in his room, even after one of the nurses snuck me a Zofran. The anxiety was completely overwhelming. Jaxson's eyes would be swelled shut for 3 days, his face was so swollen he was almost unrecognizable. Later, when things settled down, we joked that he looked like Stewie from Family Guy, but at the time, my heart was broken.
That was just the first skull surgery. Jax had 2 more the following year after two more of his sutures fused. His lambdoid and sagittal had been open initially, but the lambdoid was fused and sagittal fusing by the time Jaxson was 1. Two more reconstructive surgeries, this time involving distractor pins which I had to turn at home for 30 days. Talk about awful. I have no idea how we made it through that month without completely falling apart. As stated in the previous blog, Jaxson has had 12 surgeries overall. His brain and skull surgeries were tough and scary, but his heart surgeries came with a whole new set of concerns and risks. Those surgeries, and there will be more, are by far the hardest.
I've described the definition of anxiety in a previous blog, so I'm not going to do that again. The purpose here is to discuss anxiety as it relates to raising a special needs child. The background above is solely for the purpose of people understanding where I'm coming from, what our family has been through, and why this is important.
There is a whole new set of anxiety problems that happens when you have a special needs child. It's no longer "simply" social anxiety, performance anxiety or any other form of anxiety that can occur in otherwise "normal" people. The anxieties are now worries about your child. What's wrong with my baby? Why is this happening to my baby? What will my child's future be like? Will he/she have to undergo surgeries for the rest of his/her life? Will my child have a normal life span? Will my child ever be independent?
Those are just samples of questions we run through our heads on a regular basis. When we are in crisis-mode, something that can happen at any given moment, the questions change. They become more serious, more intense, and they come in a rapid-fire fashion. This makes it difficult to not only listen to what the doctor is telling you, but also your ability to comprehend that information. And if you aren't comprehending all of the information, how can you make the best decision in that moment?
The answer is, you can't. Well, that's not fair. The answer is, I haven't found an answer on my own. Anxiety impairs cognitive function and decision making ability on its own, and when you add extra factors, it makes things even more difficult.
How, then, do you go about making decisions when you know your brain isn't functioning properly? I will tell you what I do. When doctors are telling me things and it feels like I'm blindsided or it's coming at me so fast I can't grasp it, I listen the best I can. I ask the questions I think of. I take notes. I tell them to go ahead with their plan. Then I go home, I breathe. I research. I discuss with other members of our community to see if anyone else has experienced this before, and if so how did they handle it?
Once I feel like I finally have a grasp on what is happening, I will call the doctor to ask more questions. Or send a message via MyChart depending on the doctor. I make sure there's no stone left unturned, and if someone can't answer my question, I get a second opinion.
Here is what has helped me the most in dealing with anxiety at the doctor's office: Remember that doctors are just people! They have a higher education and they know a lot more than we do. But not every doctor is the be-all, end-all. Not every doctor will look at imaging and its report and come to the same conclusion. Not every doctor will make you feel like they care, or that they have a vested interest in your child's health. When you come across those, FIRE THEM! You are NOT required, nor are you obligated to do anything a doctor tells you. If you don't agree, get another opinion! If you are unsure how to go about this, please ask me. I've gotten second opinions on Jaxson's head and heart, just to make sure all was going as it should. I'm happy to say that our hospital has been able to complete everything Jaxson needs, and when I've consulted other places, they've agreed with the treatment plan. Not everyone is so lucky.
Doctors are just people. They are not intimidating, even though some try. Most of their arrogance is unwarranted and comes from the money they make and not the job they do. In my experience, the top doctors in every field aren't just good at their job, but they actually care about their patients.
The next time you feel your heart skip a beat and then flutter around your chest, or you find your stomach in your throat, or that nagging tension headache rears its ugly head when you're getting information from a doctor, just stop for a second. You can even tell the doctor to stop talking! Take a deep breath and settle down your heart. Then resume listening and taking notes, but again, don't let the appointment be the end of it. With anxiety, you may miss things that are said, even if you are taking notes. All you can do is be the best version of you, and if that means taking a step back to contemplate the next course of action, then DO IT!
Emergency situations work a little differently, and during those, I can say that everyone has their own coping technique. For me, in an emergency, I won't notice my anxiety until everyone is safe and cared for. Then my stomach will hurt and a lot of times I throw up. At that point, once I can get my body calmed back down, I can replay the events that occurred and determine if anything needs to change. When you're inpatient, there's always a charge nurse on the floor and an attending doctor. If you don't like something that's happening and your anxiety is through the roof, SAY SOMETHING! You can even ask for another doctor to come in, or contact one of your child's specialists to come by and assess the situation. Most doctors are more than willing to accommodate the needs of families, but they can't do that if you don't tell them you need something. Don't let your anxiety, your fear of their response stop you from speaking up!
I am not always good at that last bit, I will admit. My anxiety will stop me from asking questions because what if I'm just being paranoid? What if this isn't the right question? What if I'm just making myself crazy for no reason? That fear alone will lock me up when the doctor is in my presence. Which is why I always take notes and I always call or send messages when I have other questions. However, when your child is inpatient, you generally don't want to wait on a response via phone or message. I've learned over the course of Jaxson's stays, that doctors and nurses are almost always receptive to your questions and will not make you feel like a crazy person. Most hospital staff and faculty have a love for what they do, and they would rather you ask questions than be angry later!
To recap, anxiety has been proven to impair cognitive function and decision making ability. As the parent of a special needs child, you have anxiety at almost every appointment and definitely during inpatient or emergency visits. It's okay to be anxious about these things, you are dealing with your child's life, health and well-being! Being anxious, like being depressed, is normal. Accept that it's part of your life and that it will be for many years. Then make a plan that works for you to combat said anxiety. Whether you follow what I do, whether you take pieces from it and add others, or whether you find your own method that works for you, make a plan. And stick to that plan!
If you are like me and battle anxiety on a regular basis, I would love to hear from you! What works for you? What doesn't work for you? What are your triggers? How do you overcome anxiety in an emergency? What works for you might not work for someone else, but it also might help a different person find what they need. Comment below with your own experiences, you never know who you might help! It could even be me.
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." ~Unknown
Personally, I have battled anxiety since I was a child. The constant worrying about if I said the right thing, did the right thing, could have done or said something different that would have changed the outcome of a situation, the heightened heart rate, throwing up, headaches, etc. I've dealt with it for a long time. Prior to Jaxson being born, though, I was able to be medication free for a number of years. After he was born, I tried for a few months, but when his second surgery was scheduled, I went to the doctor for help. His first surgery happened while he was in the NICU, at 5 weeks old, when he had his feeding tube placed. His second surgery was when he was 4 months old, and it was a big one: reconstructive skull surgery. He was born with syndromic craniosynostosis. At birth, both of his coronal sutures were fused. He also had hydrocephalus and a Chiari I malformation (part of his brain pushed down into his brain stem). In order to fix his skull the first time, they literally cut out part of the back of his skull in a crescent moon shape. They replaced the bone that was cut, only put it farther back so as to create space for Jaxson's brain. It was terrifying, and I knew in advance what they would be doing, so I wasn't taking any chances. I went back on anxiety and depression meds to get me through.
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| Jax and me, before his first skull surgery |
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| Jaxson, post-Cranial Vault Reconstruction |
Even so, with all of that, I could not stay with Jaxson his first night of recovery. It's probably my biggest regret with Jaxson, but at the time, it was what I needed. Jayson, my husband and father of both of my kids, stayed with him. Jaxson cried for 30 hours. I was throwing up in the bathroom in his room, even after one of the nurses snuck me a Zofran. The anxiety was completely overwhelming. Jaxson's eyes would be swelled shut for 3 days, his face was so swollen he was almost unrecognizable. Later, when things settled down, we joked that he looked like Stewie from Family Guy, but at the time, my heart was broken.
That was just the first skull surgery. Jax had 2 more the following year after two more of his sutures fused. His lambdoid and sagittal had been open initially, but the lambdoid was fused and sagittal fusing by the time Jaxson was 1. Two more reconstructive surgeries, this time involving distractor pins which I had to turn at home for 30 days. Talk about awful. I have no idea how we made it through that month without completely falling apart. As stated in the previous blog, Jaxson has had 12 surgeries overall. His brain and skull surgeries were tough and scary, but his heart surgeries came with a whole new set of concerns and risks. Those surgeries, and there will be more, are by far the hardest.
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| Jaxson's distractor pins. |
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| Jaxson after his second open-heart surgery |
I've described the definition of anxiety in a previous blog, so I'm not going to do that again. The purpose here is to discuss anxiety as it relates to raising a special needs child. The background above is solely for the purpose of people understanding where I'm coming from, what our family has been through, and why this is important.
There is a whole new set of anxiety problems that happens when you have a special needs child. It's no longer "simply" social anxiety, performance anxiety or any other form of anxiety that can occur in otherwise "normal" people. The anxieties are now worries about your child. What's wrong with my baby? Why is this happening to my baby? What will my child's future be like? Will he/she have to undergo surgeries for the rest of his/her life? Will my child have a normal life span? Will my child ever be independent?
Those are just samples of questions we run through our heads on a regular basis. When we are in crisis-mode, something that can happen at any given moment, the questions change. They become more serious, more intense, and they come in a rapid-fire fashion. This makes it difficult to not only listen to what the doctor is telling you, but also your ability to comprehend that information. And if you aren't comprehending all of the information, how can you make the best decision in that moment?
 |
| Jaxson and Jeffrey today, happy and (mostly) healthy! |
How, then, do you go about making decisions when you know your brain isn't functioning properly? I will tell you what I do. When doctors are telling me things and it feels like I'm blindsided or it's coming at me so fast I can't grasp it, I listen the best I can. I ask the questions I think of. I take notes. I tell them to go ahead with their plan. Then I go home, I breathe. I research. I discuss with other members of our community to see if anyone else has experienced this before, and if so how did they handle it?
Once I feel like I finally have a grasp on what is happening, I will call the doctor to ask more questions. Or send a message via MyChart depending on the doctor. I make sure there's no stone left unturned, and if someone can't answer my question, I get a second opinion.
Here is what has helped me the most in dealing with anxiety at the doctor's office: Remember that doctors are just people! They have a higher education and they know a lot more than we do. But not every doctor is the be-all, end-all. Not every doctor will look at imaging and its report and come to the same conclusion. Not every doctor will make you feel like they care, or that they have a vested interest in your child's health. When you come across those, FIRE THEM! You are NOT required, nor are you obligated to do anything a doctor tells you. If you don't agree, get another opinion! If you are unsure how to go about this, please ask me. I've gotten second opinions on Jaxson's head and heart, just to make sure all was going as it should. I'm happy to say that our hospital has been able to complete everything Jaxson needs, and when I've consulted other places, they've agreed with the treatment plan. Not everyone is so lucky.
Doctors are just people. They are not intimidating, even though some try. Most of their arrogance is unwarranted and comes from the money they make and not the job they do. In my experience, the top doctors in every field aren't just good at their job, but they actually care about their patients.
The next time you feel your heart skip a beat and then flutter around your chest, or you find your stomach in your throat, or that nagging tension headache rears its ugly head when you're getting information from a doctor, just stop for a second. You can even tell the doctor to stop talking! Take a deep breath and settle down your heart. Then resume listening and taking notes, but again, don't let the appointment be the end of it. With anxiety, you may miss things that are said, even if you are taking notes. All you can do is be the best version of you, and if that means taking a step back to contemplate the next course of action, then DO IT!
Emergency situations work a little differently, and during those, I can say that everyone has their own coping technique. For me, in an emergency, I won't notice my anxiety until everyone is safe and cared for. Then my stomach will hurt and a lot of times I throw up. At that point, once I can get my body calmed back down, I can replay the events that occurred and determine if anything needs to change. When you're inpatient, there's always a charge nurse on the floor and an attending doctor. If you don't like something that's happening and your anxiety is through the roof, SAY SOMETHING! You can even ask for another doctor to come in, or contact one of your child's specialists to come by and assess the situation. Most doctors are more than willing to accommodate the needs of families, but they can't do that if you don't tell them you need something. Don't let your anxiety, your fear of their response stop you from speaking up!
I am not always good at that last bit, I will admit. My anxiety will stop me from asking questions because what if I'm just being paranoid? What if this isn't the right question? What if I'm just making myself crazy for no reason? That fear alone will lock me up when the doctor is in my presence. Which is why I always take notes and I always call or send messages when I have other questions. However, when your child is inpatient, you generally don't want to wait on a response via phone or message. I've learned over the course of Jaxson's stays, that doctors and nurses are almost always receptive to your questions and will not make you feel like a crazy person. Most hospital staff and faculty have a love for what they do, and they would rather you ask questions than be angry later!
To recap, anxiety has been proven to impair cognitive function and decision making ability. As the parent of a special needs child, you have anxiety at almost every appointment and definitely during inpatient or emergency visits. It's okay to be anxious about these things, you are dealing with your child's life, health and well-being! Being anxious, like being depressed, is normal. Accept that it's part of your life and that it will be for many years. Then make a plan that works for you to combat said anxiety. Whether you follow what I do, whether you take pieces from it and add others, or whether you find your own method that works for you, make a plan. And stick to that plan!
If you are like me and battle anxiety on a regular basis, I would love to hear from you! What works for you? What doesn't work for you? What are your triggers? How do you overcome anxiety in an emergency? What works for you might not work for someone else, but it also might help a different person find what they need. Comment below with your own experiences, you never know who you might help! It could even be me.
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| Jeffrey and Jaxson showing off their Rock star personalities while waiting at an appointment |
Wednesday, September 12, 2018
Special Needs Parenting and Depression: It's Normal
As with many fibromyalgia sufferers I know, I've battled depression and anxiety for years. I've been on and off of various medication to help battle the depression symptoms, but there are some things medication just can't fix. There are some things that need counseling, and there are some things that you simply have to manage on your own. Being a special needs mom has really put things into perspective, and learning that some of the depression I feel is normal has been a huge help in my ability to manage it.
If you haven't yet checked out Jaxson's blog or FB page, I'll give you a quick synopsis of what Jaxson has undergone over the last 6 years. He spent his first 45 days of life in the NICU and underwent his first surgery for a feeding tube at 5 weeks old. We had no idea he had a syndrome at this point, all testing had come back negative or inconclusive. Over the first 3.5 years of his life, he underwent 12 surgeries. Three reconstructive skull surgeries, brain surgery for hydrocephalus, cleft palate repair, tethered spine surgery, several sets of ear tubes, a heart cath and 2 open-heart surgeries. We almost lost him a few times, the most terrifying was after his heart cath caused a severe leak, which resulted in emergency mechanical valve placement. He coded twice before the surgery, was inpatient for 3 weeks, and will take Coumadin for the rest of his life. He sees the following specialties: Complex Healthcare, Physical Medicine, Hematology, Cardiology, ENT, Plastic surgery, Neurology, Neurosurgery, pulmonary, dermatology, immunology, dental and eye clinics, plus has an endocrinologist and GI specialist available for consultation. He receives physical, occupational, speech and feeding therapies.
All of that said, Jaxson is actually doing very well right now. My depression problem isn't solely him. He does have at least 2 surgeries needed in the next year, the first will be in November, and he has imaging and other things that could be popping up. But if you saw him on the street, you'd never, ever know. He walks, he talks, he runs, he jumps, he's ornery, he's opinionated and he's the rottenest little monkey on the planet! He makes my days brighter, especially when we have 5 days of gray Ohio skies to contend with.
Still, there's always the thoughts that creep in. We watch other kids' journey's on Facebook so we can support the Kabuki community through prayer and messages, the whole community does. When a Kabuki child is lost, we all feel it pierce our hearts. No, it's not the same as if it were our own child, but we still feel the pain. Because we don't know what tomorrow holds for our own children. Personally, I watch the older kids a lot. I like to see their progress, it always gives me hope for Jaxson's future. But with those progress posts, there are also others. Older kids who are still facing a long road of surgery, maybe an organ transplant or a failing organ that isn't quite ready for transplant. Maybe it's an autoimmune disorder, which is common as Kabuki kids age, or maybe it's simply a crappy immune system that keeps them down. No matter what it is, this aspect of Kabuki makes life seem daunting, as if there is no end to the pain and suffering our children must endure. And yes, it's depressing.
One thing we have to remember as special needs parents, though, is that it's NORMAL to have these thoughts and feelings. It's NORMAL to have some depression over your child's situation. It's NORMAL to wonder what your child's future will be like. You're going to have good days and bad days, just like everyone else, except your bad days might be just a little bit (or a lot) harder. Understanding that this is a normal part of being a special needs parent has really helped me manage my depression. Knowing that it's okay to have bad moments, days and sometimes weeks or months depending on the situation really helps.
For me, depression not only makes me sad and unmotivated, but it also can cause a flare. Whether it be pain, irritation, mood swings, gut issues, off-the-wall anxiety or a combination of these, that flare will eventually lead to difficulty. Insurmountable pain that nothing relieves will show up on some part of my body (typically around the shoulders/neck or hips), and I have to make a decision. I know I'm not injured, but God it hurts! Do I lay around and melt into the couch all day? Or do I get up, pull up my big girl panties, and continue on as if nothing is wrong? If you know me, you know it's the latter. I don't have time to lay around, I have two kids who need me to take them to school, pick them up, attend functions and events, make it to appointments, be present at teacher conferences, feed them, give them their meds and make sure their homework is done. My husband works 40+ hours a week, every week, so my goal is to make sure he doesn't have to do a whole lot of running when he does get home.
I don't have time for pain. Certainly not the kind that lays me out.
What I'm getting at is this, if you suffer from fibromyalgia and/or depression and you are the parent of a special needs child, you MUST accept the fact that some of the depression you experience is completely normal and not related to anything else! Honestly, I attribute that acceptance to my ability to fight through the depression that comes, and reduced flares during stressful situations. It's OKAY to have a break down. It's OKAY to scream and yell. It's OKAY to be sad that your child is suffering. It's OKAY to be angry at the world. It's OKAY to not be okay! Just let it be temporary, because the more we care about our own mental health and well-being, the better we are able to advocate and care for our special children.
Depression is not something I take lightly. None of what I wrote is intended to undermine anyone's feelings or where they might be in their journey. I am simply sharing something I learned that helped me. I am not a doctor, nor do I claim that these statements will be 100% effective for anyone else. But for your mental health, don't you think it's worth a shot? Accepting your life situation for what it is, is truly freeing. It doesn't stop the feelings from coming, but it certainly makes it easier to overcome. At least, it did for me. Try to remember that what works for one person might not work for someone else, but also know that acceptance takes time.
Please feel free to comment below or ask questions about anything written on any post. I am happy to clarify things that seem murky because I failed to explain them properly! I'm still searching for my voice, but I feel like it's starting to come together, so hopefully I can start reaching the audience that needs this the most! Your support is very much appreciated!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." ~Unknown
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| Jaxson on his first day of Kindergarten 2018 |
All of that said, Jaxson is actually doing very well right now. My depression problem isn't solely him. He does have at least 2 surgeries needed in the next year, the first will be in November, and he has imaging and other things that could be popping up. But if you saw him on the street, you'd never, ever know. He walks, he talks, he runs, he jumps, he's ornery, he's opinionated and he's the rottenest little monkey on the planet! He makes my days brighter, especially when we have 5 days of gray Ohio skies to contend with.
Still, there's always the thoughts that creep in. We watch other kids' journey's on Facebook so we can support the Kabuki community through prayer and messages, the whole community does. When a Kabuki child is lost, we all feel it pierce our hearts. No, it's not the same as if it were our own child, but we still feel the pain. Because we don't know what tomorrow holds for our own children. Personally, I watch the older kids a lot. I like to see their progress, it always gives me hope for Jaxson's future. But with those progress posts, there are also others. Older kids who are still facing a long road of surgery, maybe an organ transplant or a failing organ that isn't quite ready for transplant. Maybe it's an autoimmune disorder, which is common as Kabuki kids age, or maybe it's simply a crappy immune system that keeps them down. No matter what it is, this aspect of Kabuki makes life seem daunting, as if there is no end to the pain and suffering our children must endure. And yes, it's depressing.
One thing we have to remember as special needs parents, though, is that it's NORMAL to have these thoughts and feelings. It's NORMAL to have some depression over your child's situation. It's NORMAL to wonder what your child's future will be like. You're going to have good days and bad days, just like everyone else, except your bad days might be just a little bit (or a lot) harder. Understanding that this is a normal part of being a special needs parent has really helped me manage my depression. Knowing that it's okay to have bad moments, days and sometimes weeks or months depending on the situation really helps.
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| Jeffrey on his first day of school 2018 |
For me, depression not only makes me sad and unmotivated, but it also can cause a flare. Whether it be pain, irritation, mood swings, gut issues, off-the-wall anxiety or a combination of these, that flare will eventually lead to difficulty. Insurmountable pain that nothing relieves will show up on some part of my body (typically around the shoulders/neck or hips), and I have to make a decision. I know I'm not injured, but God it hurts! Do I lay around and melt into the couch all day? Or do I get up, pull up my big girl panties, and continue on as if nothing is wrong? If you know me, you know it's the latter. I don't have time to lay around, I have two kids who need me to take them to school, pick them up, attend functions and events, make it to appointments, be present at teacher conferences, feed them, give them their meds and make sure their homework is done. My husband works 40+ hours a week, every week, so my goal is to make sure he doesn't have to do a whole lot of running when he does get home.
I don't have time for pain. Certainly not the kind that lays me out.
What I'm getting at is this, if you suffer from fibromyalgia and/or depression and you are the parent of a special needs child, you MUST accept the fact that some of the depression you experience is completely normal and not related to anything else! Honestly, I attribute that acceptance to my ability to fight through the depression that comes, and reduced flares during stressful situations. It's OKAY to have a break down. It's OKAY to scream and yell. It's OKAY to be sad that your child is suffering. It's OKAY to be angry at the world. It's OKAY to not be okay! Just let it be temporary, because the more we care about our own mental health and well-being, the better we are able to advocate and care for our special children.
Depression is not something I take lightly. None of what I wrote is intended to undermine anyone's feelings or where they might be in their journey. I am simply sharing something I learned that helped me. I am not a doctor, nor do I claim that these statements will be 100% effective for anyone else. But for your mental health, don't you think it's worth a shot? Accepting your life situation for what it is, is truly freeing. It doesn't stop the feelings from coming, but it certainly makes it easier to overcome. At least, it did for me. Try to remember that what works for one person might not work for someone else, but also know that acceptance takes time.
Please feel free to comment below or ask questions about anything written on any post. I am happy to clarify things that seem murky because I failed to explain them properly! I'm still searching for my voice, but I feel like it's starting to come together, so hopefully I can start reaching the audience that needs this the most! Your support is very much appreciated!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." ~Unknown
Saturday, September 8, 2018
Weather Increases the Impact of Anxiety Symptoms
Have you ever heard the saying, "The rain in Spain is mainly on the plain?" There's a saying I came up with using that, and it goes like this, "The rain brings the pain and fogs up the brain." Weather has such a huge impact on how I feel on a daily basis, and rainy weather is the worst. Heat and humidity make me swell and ache, cold makes me stiff, but rain brings it all and then some.
My way of combating painsomnia is to take a melatonin at night to help me fall asleep. Typically, it works very well and most nights I only wake up a time or two. But some nights, like last night, you wouldn't even know I took it. I wasn't in pain, nothing more than normal anyway, I just couldn't shut my brain off. That's where anxiety comes in to play, which leads me to what I wanted to talk about today.
The rainy weather has my body in havoc, aching everywhere no matter how I sit, stand or lay. It's tolerable, though, so I'm trying to ignore it. The rain also affects mental health in a variety of ways, for me it's anxiety and occasionally depression. According to the National Institute of Health (NIH), there are several types of anxiety disorders ranging from generalized anxiety to panic disorders and phobias. I, personally, have generalized anxiety disorder, which can cause the following symptoms (NIH):
My way of combating painsomnia is to take a melatonin at night to help me fall asleep. Typically, it works very well and most nights I only wake up a time or two. But some nights, like last night, you wouldn't even know I took it. I wasn't in pain, nothing more than normal anyway, I just couldn't shut my brain off. That's where anxiety comes in to play, which leads me to what I wanted to talk about today.
The rainy weather has my body in havoc, aching everywhere no matter how I sit, stand or lay. It's tolerable, though, so I'm trying to ignore it. The rain also affects mental health in a variety of ways, for me it's anxiety and occasionally depression. According to the National Institute of Health (NIH), there are several types of anxiety disorders ranging from generalized anxiety to panic disorders and phobias. I, personally, have generalized anxiety disorder, which can cause the following symptoms (NIH):
- Feeling restless, wound-up, or on-edge
- Being easily fatigued
- Having difficulty concentrating; mind going blank
- Being irritable
- Having muscle tension
- Difficulty controlling feelings of worry
- Having sleep problems, such as difficulty falling or staying asleep, restlessness, or unsatisfying sleep
The biggest problem with any of these symptoms is that they cause a vicious cycle. Being easily fatigued leads to increased irritability and an inability to control thoughts and emotions. Feeling restless or on edge can lead to sleeping problems, which in turn causes additional fatigue. Fatigue alone can impair cognitive function, which leads to irritability as well. Everything feeds off of everything else. Rarely do I experience one symptom alone, typically it's all of them. My life stresses, weather and other things determine the level at which these symptoms present.
Last night, when I should have been asleep, I was completely restless, couldn't fall asleep, couldn't focus on my mindfulness to ground me and my brain wouldn't stop. I often have trouble not thinking about Jaxson and/or Jeffrey when I fall asleep. Lately, Jeffrey has been amazing and I haven't worried too much about him. But Jaxson has a lot coming up, and I can't stop the thoughts sometimes.
If you don't know me, I haven't yet talked much about Jaxson here. He has his own blog called Jaxson's Ride, where you can catch updates on his health. Jaxson has Kabuki syndrome, a rare genetic disorder affecting just 1:32,000 births worldwide. He did not inherit Kabuki, it was a de novo (or "new") mutation, as is common with the syndrome. For more information on that, please visit All Things Kabuki, the only patient centered non-profit. For updates on Jaxson himself, please visit his blog or his Facebook page.
A quick blurb about what's coming up, just to fill you in. In November, Jaxson will have his tonsils and adenoids removed in preparation for a velopharyngeal dysfunction (VPD) repair. The November surgery will be surgery number 13 and who knows how many procedures. Jaxson is 6. The VPD repair will hopefully be pushed to next summer, provided that his mechanical heart valve doesn't need replaced in that time as well.
That is just a smidge of what Jaxson goes through, so please read up on Kabuki if you are unfamiliar! You can see why it keeps me up at night. Jaxson takes Coumadin, and has to be admitted to the hospital 3 days before his procedure to be put on a Heparin drip. Then surgery, then recovery and praying for no complications. Jaxson also started all-day Kindergarten this year. So there's a ton going on there, and some nights, it just runs through my head. Over and over and over and over.
A quick blurb about what's coming up, just to fill you in. In November, Jaxson will have his tonsils and adenoids removed in preparation for a velopharyngeal dysfunction (VPD) repair. The November surgery will be surgery number 13 and who knows how many procedures. Jaxson is 6. The VPD repair will hopefully be pushed to next summer, provided that his mechanical heart valve doesn't need replaced in that time as well.
That is just a smidge of what Jaxson goes through, so please read up on Kabuki if you are unfamiliar! You can see why it keeps me up at night. Jaxson takes Coumadin, and has to be admitted to the hospital 3 days before his procedure to be put on a Heparin drip. Then surgery, then recovery and praying for no complications. Jaxson also started all-day Kindergarten this year. So there's a ton going on there, and some nights, it just runs through my head. Over and over and over and over.
Yes, some of that is what doctors would call "normal" anxiety because of the situation. But when you already have an anxiety disorder, sometimes it just takes over.
The good news is that even though I only got a few hours of sleep last night, I don't feel terrible. I might need a nap later, but I've been up and taking care of kids with only a little crankiness. I just hope that, even though it's supposed to rain all day today and tomorrow, my pain stays at the level I feel now. It's tolerable achiness without a lot of stiffness. During weather like this, I'll take it!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." -Unknown
Wednesday, September 5, 2018
Pain, Pain, Go Away
When people hear the word, "pain," they typically think of getting an injury or being sick. But when you have chronic pain, it means something far different. There is no broken bone to heal, no scrapes to scab up, no visible injury. Just pain. Aches. Soreness. Stabs. Charlie horses. Knots pinching nerves. Swelling. Stiffness. For seemingly no reason, and the various treatment methods available only work sometimes.
Think about it. You pull your hamstring. That takes weeks to heal on its own. The pain is constant the entire time. The pain pills you were given only make you loopy and do nothing for the pain. Ibuprofen and other over-the-counter (OTC) methods aren't working. So you suffer. You limp around feeling like you wish someone would cut your leg off every time you move. You can't bend. You can't lift. By the time your leg is healed, you have it set in your mind that you will do everything in your power to NEVER pull that muscle again.
Except with fibromyalgia, there's no injury to wait on healing. It just hurts. Constantly. It could be your back one day, your hands another, your joints another. It all depends on how your fibromyalgia affects you. But it's constant, and it's draining. It is the reason chronic fatigue often coincides with chronic pain. Because how can you sleep comfortably when your body hurts? What's comfortable upon falling asleep could trigger pain later in the night, causing most nights to result in tossing and turning and loss of sleep. In the fibro world, we call this "painsomnia."
Let me make this a little more personal. Here's how today has gone for me:
First, let's start with the weather. It's unseasonably hot here in Ohio, so hot that the largest district in the state canceled school today because of the heat. Many of their buildings lack air conditioning and it isn't safe for the kids to be there. That's how hot it is. Indexes into the 100s, in September. Plus high humidity, high dew point, high UV index (wear sunscreen!) and moderate air quality. I mention these things because they are important, the weather plays a huge role in how I feel on a daily basis.
So I woke up today extremely stiff and sore. The first thing I notice is my back, every day. I tweaked my sciatic nerve about 2 weeks ago, and while the worst of it seems to have passed, it still bothers me. Sitting up upon waking is hard, I'm so stiff that it takes a decent effort to get upright. Then standing. In general, when I wake up, it takes me about an hour to be able to stand up straight and walk right. Today, I haven't reached that point yet. Yes, I can move around, but when I get up, I am hunched over a bit for about 10 steps before I can be upright. Stiffness is typically accompanied by some kind of pain, whether it be aching, stabbing or soreness. Today it's a combination.
The next thing I noticed was swelling. My hands are a big culprit of my daily woes, they've been a source of annoyance for many years, actually, and now they are the bane of my existence. Today, though, it wasn't just my hands. Without looking in the mirror, I could tell my face was swollen and my eyes were more puffy than normal. I looked at my ankles, which verge on non-existence by the end of every day anyway, and could see they were swollen too.
The whole process only took about 5 minutes, but I knew that it was going to be a day where I alternated pain management treatments.
I pulled myself out of bed, grabbed some coffee and watched the news. Jaxson getting out of bed is what got me up, but he fell back to sleep on the couch and didn't wake up until 8:30. Jeffrey didn't get up until 8. These boys are usually up and bouncing by 6:30! So I had a little bit of time to sit on the couch and try to wake up my body.
Once breakfast starts, though, it's non-stop the rest of the day. Today maybe not as much because the kids were off of school, but most days I'm moving from about 6:30am until 9pm when the kids go to bed. Breakfast consists of throwing something together for Jeffrey, usually cereal or waffles, and figuring out what to do with Jax. He has meds that need to be prepared, prevacid and aspirin get diluted in water to go through his tube, plus a vitamin and two other meds. If he's having an oral meal, I have to make that plus get him to drink his Pediasure and change his diaper. After breakfast, the kids have to get dressed and brush teeth. I have to help Jax with his teeth, and I usually put his new shorts for the day on when he gets his diaper changed. Then I have to pack lunches, make sure Jeffrey's uniform is on point and that he's taken care of the dog, and then we leave. Drop off Jeffrey at latchkey around 7:30 (yes, I do all of that in an hour), come back home. If Jax didn't finish breakfast, he finishes it then and gets on the bus at 8:15.
After the kids are gone, I have a number of things I'm involved in to help keep me busy. Because, you know, being the mom of a special needs child doesn't keep me busy enough. I have daily cleaning that needs done (I follow a schedule, well, I made one to follow haha), plus I typically spend some time on the All Things Kabuki website. I help a friend with her business website as well, and in return she dyes my hair purple. The past 2 weeks I've been working on a project for a teacher at Jeffrey's school, but I finished that yesterday. I'm sure I'll have projects from both kids' schools to work on as the year goes on too, I plan to be involved at both places as much as I can. That includes monthly walks to the library with the 1st and 2nd graders at Jeffrey's school to help out the teacher.
Around 3pm, as long as there are no appointments that day, I typically leave to pick up Jaxson if it's a hot day or if traffic looks bad. He's done at 3:30 and then we return 30 minutes south to pick up Jeffrey at 4. Luckily, my husband gets off work by 3, so most days I don't have to get both kids, just one. When everyone gets home, they get a break until dinner at 5 (made by Jayson, hubby), feed the kids, do homework and do baths. Around 7:30 I have to get Jaxson's second round of medicine ready in syringes to go through his tube. Once he gets his medicine, it's what we call "chill time" and the kids are laying in their beds either reading, playing quietly or watching their tablets until 9 when everything gets shut off.
I really wanted to hit on Jaxson's meds and things because, as I said, my hands are the bane of my existence. I can no longer write with a pen, which makes me really sad because to me, there's nothing better than putting a pen to paper. But I can type, at least for awhile. Even that makes my hands ache, though!
So all through the day, and this is an example of a typical day which is not every day, I'm battling stiffness, soreness, pain, aches and twinges while doing all of these things. Eventually, even when the pain is tolerable, it's just too much to bear. It's frustrating, it's depressing and there are definite days when it's hard to keep moving. And there are days when my body says, "Nope, you're done. Time to sit down." I literally have no choice but to rest if I want to keep functioning and be able to take care of my kids. It's not just taking care of them, either, though, it's about making sure they get to do things that make life fun. Like go to the park, go to the zoo, make crafts, etc. These are things that are hard for me, things that take more energy than I have, things I know I'm going to pay for if I do them but I do them anyway.
Imagine living every day with some part of your body in pain. Imagine the effect it would have on you. Even sitting here, typing this, my hands are swollen, stiff and aching. I'm sitting on a pillow and keeping my back straight, but it is killing me and there are points in my back that tingle as if they're going to sleep. My wrists ache from the angle my arms are resting on the table, but if I move them then another part of my arm will hurt and this is tolerable. Think about having to make those decisions: how should I sit so that I'm the most comfortable? How should I lay so that I don't ache when I get up? Those are things that "normal" people don't have to think about. They just lay down or sit down and it's no different than anything else. But for those of us with fibro, every tiny movement we make can change the way another part of our body feels.
The next time you see me in person, watch me. I move around A LOT. Sitting or standing, doesn't matter. I can only sit or stand in the same position for a short time before something starts to bug me and I have to move. Then it happens again and I move back. And again. And again. Most of the time I don't even do it consciously, but on days when I "fidget" a lot, I notice.
This post merely scratches the surface of dealing with pain every day. Tomorrow's blog could be completely different. You'll have to come back tomorrow to see!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." -Unknown
Think about it. You pull your hamstring. That takes weeks to heal on its own. The pain is constant the entire time. The pain pills you were given only make you loopy and do nothing for the pain. Ibuprofen and other over-the-counter (OTC) methods aren't working. So you suffer. You limp around feeling like you wish someone would cut your leg off every time you move. You can't bend. You can't lift. By the time your leg is healed, you have it set in your mind that you will do everything in your power to NEVER pull that muscle again.
Except with fibromyalgia, there's no injury to wait on healing. It just hurts. Constantly. It could be your back one day, your hands another, your joints another. It all depends on how your fibromyalgia affects you. But it's constant, and it's draining. It is the reason chronic fatigue often coincides with chronic pain. Because how can you sleep comfortably when your body hurts? What's comfortable upon falling asleep could trigger pain later in the night, causing most nights to result in tossing and turning and loss of sleep. In the fibro world, we call this "painsomnia."
Let me make this a little more personal. Here's how today has gone for me:
First, let's start with the weather. It's unseasonably hot here in Ohio, so hot that the largest district in the state canceled school today because of the heat. Many of their buildings lack air conditioning and it isn't safe for the kids to be there. That's how hot it is. Indexes into the 100s, in September. Plus high humidity, high dew point, high UV index (wear sunscreen!) and moderate air quality. I mention these things because they are important, the weather plays a huge role in how I feel on a daily basis.
So I woke up today extremely stiff and sore. The first thing I notice is my back, every day. I tweaked my sciatic nerve about 2 weeks ago, and while the worst of it seems to have passed, it still bothers me. Sitting up upon waking is hard, I'm so stiff that it takes a decent effort to get upright. Then standing. In general, when I wake up, it takes me about an hour to be able to stand up straight and walk right. Today, I haven't reached that point yet. Yes, I can move around, but when I get up, I am hunched over a bit for about 10 steps before I can be upright. Stiffness is typically accompanied by some kind of pain, whether it be aching, stabbing or soreness. Today it's a combination.
The next thing I noticed was swelling. My hands are a big culprit of my daily woes, they've been a source of annoyance for many years, actually, and now they are the bane of my existence. Today, though, it wasn't just my hands. Without looking in the mirror, I could tell my face was swollen and my eyes were more puffy than normal. I looked at my ankles, which verge on non-existence by the end of every day anyway, and could see they were swollen too.
The whole process only took about 5 minutes, but I knew that it was going to be a day where I alternated pain management treatments.
I pulled myself out of bed, grabbed some coffee and watched the news. Jaxson getting out of bed is what got me up, but he fell back to sleep on the couch and didn't wake up until 8:30. Jeffrey didn't get up until 8. These boys are usually up and bouncing by 6:30! So I had a little bit of time to sit on the couch and try to wake up my body.
Once breakfast starts, though, it's non-stop the rest of the day. Today maybe not as much because the kids were off of school, but most days I'm moving from about 6:30am until 9pm when the kids go to bed. Breakfast consists of throwing something together for Jeffrey, usually cereal or waffles, and figuring out what to do with Jax. He has meds that need to be prepared, prevacid and aspirin get diluted in water to go through his tube, plus a vitamin and two other meds. If he's having an oral meal, I have to make that plus get him to drink his Pediasure and change his diaper. After breakfast, the kids have to get dressed and brush teeth. I have to help Jax with his teeth, and I usually put his new shorts for the day on when he gets his diaper changed. Then I have to pack lunches, make sure Jeffrey's uniform is on point and that he's taken care of the dog, and then we leave. Drop off Jeffrey at latchkey around 7:30 (yes, I do all of that in an hour), come back home. If Jax didn't finish breakfast, he finishes it then and gets on the bus at 8:15.
After the kids are gone, I have a number of things I'm involved in to help keep me busy. Because, you know, being the mom of a special needs child doesn't keep me busy enough. I have daily cleaning that needs done (I follow a schedule, well, I made one to follow haha), plus I typically spend some time on the All Things Kabuki website. I help a friend with her business website as well, and in return she dyes my hair purple. The past 2 weeks I've been working on a project for a teacher at Jeffrey's school, but I finished that yesterday. I'm sure I'll have projects from both kids' schools to work on as the year goes on too, I plan to be involved at both places as much as I can. That includes monthly walks to the library with the 1st and 2nd graders at Jeffrey's school to help out the teacher.
Around 3pm, as long as there are no appointments that day, I typically leave to pick up Jaxson if it's a hot day or if traffic looks bad. He's done at 3:30 and then we return 30 minutes south to pick up Jeffrey at 4. Luckily, my husband gets off work by 3, so most days I don't have to get both kids, just one. When everyone gets home, they get a break until dinner at 5 (made by Jayson, hubby), feed the kids, do homework and do baths. Around 7:30 I have to get Jaxson's second round of medicine ready in syringes to go through his tube. Once he gets his medicine, it's what we call "chill time" and the kids are laying in their beds either reading, playing quietly or watching their tablets until 9 when everything gets shut off.
I really wanted to hit on Jaxson's meds and things because, as I said, my hands are the bane of my existence. I can no longer write with a pen, which makes me really sad because to me, there's nothing better than putting a pen to paper. But I can type, at least for awhile. Even that makes my hands ache, though!
So all through the day, and this is an example of a typical day which is not every day, I'm battling stiffness, soreness, pain, aches and twinges while doing all of these things. Eventually, even when the pain is tolerable, it's just too much to bear. It's frustrating, it's depressing and there are definite days when it's hard to keep moving. And there are days when my body says, "Nope, you're done. Time to sit down." I literally have no choice but to rest if I want to keep functioning and be able to take care of my kids. It's not just taking care of them, either, though, it's about making sure they get to do things that make life fun. Like go to the park, go to the zoo, make crafts, etc. These are things that are hard for me, things that take more energy than I have, things I know I'm going to pay for if I do them but I do them anyway.
Imagine living every day with some part of your body in pain. Imagine the effect it would have on you. Even sitting here, typing this, my hands are swollen, stiff and aching. I'm sitting on a pillow and keeping my back straight, but it is killing me and there are points in my back that tingle as if they're going to sleep. My wrists ache from the angle my arms are resting on the table, but if I move them then another part of my arm will hurt and this is tolerable. Think about having to make those decisions: how should I sit so that I'm the most comfortable? How should I lay so that I don't ache when I get up? Those are things that "normal" people don't have to think about. They just lay down or sit down and it's no different than anything else. But for those of us with fibro, every tiny movement we make can change the way another part of our body feels.
The next time you see me in person, watch me. I move around A LOT. Sitting or standing, doesn't matter. I can only sit or stand in the same position for a short time before something starts to bug me and I have to move. Then it happens again and I move back. And again. And again. Most of the time I don't even do it consciously, but on days when I "fidget" a lot, I notice.
This post merely scratches the surface of dealing with pain every day. Tomorrow's blog could be completely different. You'll have to come back tomorrow to see!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." -Unknown
New Blog Introduction
If you know me and are reading this, then you already know I have a blog for my son Jaxson. That blog is to serve as a place for me to update friends, family and supporters on what is going on in Jaxson's life. Upcoming surgeries, appointment reviews, things like that. In January of 2017, I was diagnosed with fibromyalgia, a chronic pain disorder. Writing is my love, my passion, and it's past time that I had a blog for myself.
This blog will serve a number of purposes. First, it will serve as a place where I can chronicle my symptoms. Yes, there are apps that provide this as well, but this is more my style. I've decided that I'm no longer going to hide how I feel on a daily basis, nor am I going to hide the pain that I feel from anyone. In today's world, everything revolves around creating awareness for various topics. The best way to create that awareness is to tell people what it's really like, from the perspective of someone who deals with it daily.
The second purpose will be a place for me to provide awareness about depression and anxiety. I suffer from both, and my symptoms are often exacerbated by the weather and stresses in my life relating to both of my boys and other things. Fibro isn't just about pain, it can affect multiple parts of the body, including the GI tract.
The third purpose is that this gives me a place to write whatever I want, however I want and whenever I want. This may result in some private writings that I do not share with the world, but gives me a place to put down in writing how I feel and what was going on when I felt it.
All of these things will aid me in various ways. The blog is an outlet, a place where I can let loose and get things off my chest. This will result (hopefully) in better management of my symptoms. It will also help me track my triggers. What are the biggest causes of my flares? Is it pain? Is it stress? Is it anxiety? A combination? These are things I can take into therapy and find ways to manage my emotions before symptoms pop up.
I also hope that this blog serves to show other people who suffer from fibromyalgia that life doesn't have to end because of pain, anxiety, depression or anything else. I hope people can read this and say, "Yeah! That's exactly how it feels!" And find some relief in knowing they are not alone. Especially parents of special needs children. While battling fibromyalgia in general can be difficult, the obstacles that have to be overcome as a special needs parent can sometimes feel insurmountable. I know several parents of Kabuki kids (like Jaxson) who battle fibro and will definitely understand a lot of what I post, and I can only imagine there are more I am unaware are out there.
While we have reached the end of this post, know that there will be another post shortly. I still have to wrap my head around what I want to write, but it's coming! Thank you for reading. Please share with anyone you know who battles fibromyalgia or another chronic pain disorder so that they may know they are not alone! I plan to end my blogs the same what I end Jaxson's, with a quote I have tattooed on my calf:
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." ~Unknown
This blog will serve a number of purposes. First, it will serve as a place where I can chronicle my symptoms. Yes, there are apps that provide this as well, but this is more my style. I've decided that I'm no longer going to hide how I feel on a daily basis, nor am I going to hide the pain that I feel from anyone. In today's world, everything revolves around creating awareness for various topics. The best way to create that awareness is to tell people what it's really like, from the perspective of someone who deals with it daily.
The second purpose will be a place for me to provide awareness about depression and anxiety. I suffer from both, and my symptoms are often exacerbated by the weather and stresses in my life relating to both of my boys and other things. Fibro isn't just about pain, it can affect multiple parts of the body, including the GI tract.
The third purpose is that this gives me a place to write whatever I want, however I want and whenever I want. This may result in some private writings that I do not share with the world, but gives me a place to put down in writing how I feel and what was going on when I felt it.
All of these things will aid me in various ways. The blog is an outlet, a place where I can let loose and get things off my chest. This will result (hopefully) in better management of my symptoms. It will also help me track my triggers. What are the biggest causes of my flares? Is it pain? Is it stress? Is it anxiety? A combination? These are things I can take into therapy and find ways to manage my emotions before symptoms pop up.
I also hope that this blog serves to show other people who suffer from fibromyalgia that life doesn't have to end because of pain, anxiety, depression or anything else. I hope people can read this and say, "Yeah! That's exactly how it feels!" And find some relief in knowing they are not alone. Especially parents of special needs children. While battling fibromyalgia in general can be difficult, the obstacles that have to be overcome as a special needs parent can sometimes feel insurmountable. I know several parents of Kabuki kids (like Jaxson) who battle fibro and will definitely understand a lot of what I post, and I can only imagine there are more I am unaware are out there.
While we have reached the end of this post, know that there will be another post shortly. I still have to wrap my head around what I want to write, but it's coming! Thank you for reading. Please share with anyone you know who battles fibromyalgia or another chronic pain disorder so that they may know they are not alone! I plan to end my blogs the same what I end Jaxson's, with a quote I have tattooed on my calf:
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." ~Unknown
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