I know I've been absent from this blog for a few months. I'm sorry. I've been so afraid and sick and terrified that anytime I sat down to write anything, I felt an overflow of emotions that wouldn't allow me to express myself articulately. And I'm still in that state, but I think I'm going to try to tell y'all what's up.
My health has gone into another nosedive. I've been terrified, feeling like I'm falling down a slippery slope to some uncertain fate.
I managed to start my internship with a local nonprofit that trains service dogs for veterans. Their name and the names of all veterans and details about that internship can not be discussed here, as I signed a privacy agreement. I had no problem signing that agreement, as I believe the people I work with deserve the privacy the paper asked me to protect. I will say that I think I've found my calling, and it is training service dogs for civilians. I will be re-directing any veteran that comes to me for a service dog to the nonprofit I am interning with, as they are the best at what they do. But I'm very excited to see what the future holds for me as it relates to dog training.
Now, back to health. Long story short, I'm seeing a bunch of specialists and they are testing me for many diseases. They don't think it is EDS anymore or, if I do have EDS, I have other things on top of that. I'm no longer just an Ehlers-Danlos "Zebra," and I'm just so scared. The main thing they think I probably have is Multiple Sclerosis. I had been doing some research on new and scary symptoms that were getting aggressively worse, and some of my EDS forums were talking about how MS was linked to EDS and how MS was the source of all of these symptoms that I realized I had. I researched MS myself, and was astonished how every single detail of MS seemed to line up with my symptoms. I approached my Internal Medicine Specialist with a new list of all my symptoms and told him I was worried about MS. I asked him to tell me if I was being a hypochondriac and that I just had EDS. He told me I was right to worry. My heart sank. He told me that my symptom list was textbook MS. We set up tests and specialists. He did some blood tests to rule out Lupus and RA, and they came back ruling out Lupus and RA. And now we wait. We wait for the horrible news.
Because either way, it will be horrible. If I am told I have MS, it is horrible. If I am told I don't, then I'm back where I was YET AGAIN where I have to fight for tests and diagnoses and some goddamn help.
If I had a dollar for the number of times I've broken down sobbing, telling my husband that I just want someone to help me, I'd have enough money to pay for all the alternative treatments I need to stay upright. I've been collapsed on the bedroom floor, sobbing and begging the powers that be for some form of help more than once in the past couple months.
So here I am, unable to write any sort of good blog post about current events, my dogs, my internship, TV, movies, music, or whatever else because I'm in a blind panic about what is happening inside my body.
So. That's me. How are you all?
Showing posts with label Illness. Show all posts
Showing posts with label Illness. Show all posts
Thursday, October 12, 2017
Friday, June 2, 2017
The Porch Theory
Y'all, I had a dream two nights ago and I just can't stop thinking about it. This dream has radically changed how I think about my life. I woke up today thinking about it again and it's been three hours and I can't sleep or stop thinking about it so I think I'll share. Bear with me as dreams are weird and hazy and confusing, but hopefully you can follow along.
In my dream, I had a session with a famous therapist. Famous therapist's name was Sally or Susan or something like that. My brain isn't super original when it comes to names. Anyways, I was in her office with my husband and I was crying and telling her all about my life and talking about how nothing I'm doing seems to be working. She nodded gravely and told me it was because all I was doing was re-painting my porch. Stay with me, guys. This is where shit gets real. I was like, "This sounds like another mindfulness exercise that isn't going to help," and she told me that those exercises helped you recognize the chips in your porch paint and the other general wear and tear. What the heck, right? She gave me a workbook and told me I needed to do the homework before she saw me again the next day. In my dream, I went home and grumbled about having to do some more pointless analogy therapy that ultimately would do nothing for me. I then opened the workbook and what was in there was fascinating.
The Porch Theory is this idea that your life is built like a porch. (I need to add here that I am not a carpenter, have built stage set pieces, and am fully aware that what follows is not actually a good way to build a porch.) There is a poured foundation made of concrete. On top are four main support beams. Covering those are the long pieces of wood that make up the porch. Then comes the stain/paint and the decorations. Each part of the porch represents something different. The foundation is what your every action stems from. This is the root cause of everything you do. Then the foundation beams are the four main focuses your brain has. The long pieces of wood are your values that stem from those main focuses (which are influenced by the foundation). And then comes the paint/stain, which is the actions that you do and your outward symptoms, caused by the values which stem from the focuses that are influenced by the foundation.
In my dream, I did two written exercises. The first was to analyze my life starting from the paint and working my way back to the foundation. Then I labeled a diagram of my current "porch" with what I had written. This exercise took a long time, even in dream world. I ended up skipping around to the different parts of the "porch" as I tried to make sense of everything. The end result was me staring at this "porch," feeling as though I had been laid bare onto paper. My paint, the outward manifestation of my inward life, included like "people pleaser," "excessive apologizing," "panic and anxiety attacks," "sobbing," "anger towards my health," "shame over needing mobility devices, medications, etc," and "going to countless doctor appointments even though I know this doctor isn't the one for me." I could go on, but you get the point. The long pieces of wood, the values, were things like "religion," "putting family and friends above health," "getting the highest education possible," "being the best," "keeping a clean house at all costs," "forcing my body to stay healthy as much as possible," and "working a good job". The four main support beams were "Not wanting to be abandoned," "Not wanting anyone to regret being around me," "Not wanting to be a burden," and "Thinking everyone else deserves more/better than I do." My foundation was Fear and Worthlessness.
After I did this exercise, I found myself back in the dream therapist's office, sobbing and holding my husband's hands as I told her all about my porch. What could I do? This seemed like a horrible life I'd created for myself, and I felt hopeless about it.
She told me that yes, this is a terrible porch. It is, at its foundation, flawed. She told me that I couldn't expect a beautiful life when my thinking was all stemming from places of fear and worthlessness the same way that I shouldn't expect a porch with a nasty, cracked foundation and rotting wood to be an amazing place to have lemonade and iced tea during the summer with my husband. She told me it wasn't my fault that my porch is shit. She jokingly told me that with the life I've lived, she was surprised the whole damn house hadn't fallen apart. I couldn't stop crying. She got down on my level, looked me in the eyes and quietly asked me if I was ready for a new porch. I told her yes, but how the hell do I do that? She nodded solemnly and said, "Renovations."
She then had me do the second exercise in the workbook. The second exercise was, "Describe your dream porch (aka ideal life/values/etc.). My dream porch's outward appearance were things like "singing in the shower again," and "smiling," and "enjoying time with friends," and "happiness," and "baking" and "painting". My porch boards, my values, were made up of "Living in the moment," "Gratefulness," "Finding contentment," "Loving friends," "Relationship with husband," and others I can't remember right now. The four beams were "mental health," "healthy marriage," "physical health," and "hope." And the foundation? It was Self Love.
Sounds great, right? But how to get there? SallySusan the Dream Therapist was a little hazy on this one, but told me that every time I am having an outward symptom or thought that echoes the nasty porch, to think of the ideal porch and try to follow along with what I think that would look like. For example, if I find myself crying over how messy the house is, I should take a step back and realize that this comes from that gross foundation. I can then try to remind myself of how I want to be thinking. AKA, "Yes, the house is messy but it actually isn't hurting anyone and hey, isn't it great that husband and I have been resting and going places and having fun and yeah, we haven't had time to clean the house but look at all we've done this week!" or "Yes, the house is messy but it actually isn't hurting anyone and if it is, I can ask husband for help because I don't have to do it all by myself and it isn't horrible to ask him to help and we could play music and it could actually be fun!" or "Yes, the house is messy but no, you haven't 'done nothing' all week, you've taken all your pills on time and rested your joints and remember that one time you pet your dog? That was pretty awesome! And it's okay to focus on your health. Remember those beams on your dream porch? It's okay." She told me that I was going to need to go right down to the foundation and change it and then the other changes would follow.
My dream therapist told me that this was going to be nasty, messy work. She told me to think of it like any renovation. There will be setbacks. She told me that any time I experience a setback while working toward this "new porch" and feel like I'll never get there, to just think of it as a construction issue and forgive myself. There might be termites living in the wood of the porch, waiting to be exposed. The renovation crew might take unexpected holidays and leave me with a shattered mess to work around for weeks. Maybe there's some electrical wiring that needs to be replaced. Perhaps we'll get the porch built and realize that the foundation was never actually touched, the crew just said they did it and we have to tear the whole thing apart again. She told me that just as re-making a foundation for a house or porch is ridiculously hard and irritating, re-making a foundation for my life will be, too. And just like porches continually need weather-proofing, the occasional board replacement, re-painting, and other regular maintenance, keeping myself healthy will require constant work. But she told me to look forward to the days when I can sit out on a nice porch, sipping iced tea on a lounger next to my husband and watching the sunset.
Although it was a dream, I'm going to follow along with the Porch Theory and see if it works. Feel free to join me. If you'd like, you can share your own "Dream Porch" with me in the comments or on my Facebook page, Instagram, or Twitter.
In my dream, I had a session with a famous therapist. Famous therapist's name was Sally or Susan or something like that. My brain isn't super original when it comes to names. Anyways, I was in her office with my husband and I was crying and telling her all about my life and talking about how nothing I'm doing seems to be working. She nodded gravely and told me it was because all I was doing was re-painting my porch. Stay with me, guys. This is where shit gets real. I was like, "This sounds like another mindfulness exercise that isn't going to help," and she told me that those exercises helped you recognize the chips in your porch paint and the other general wear and tear. What the heck, right? She gave me a workbook and told me I needed to do the homework before she saw me again the next day. In my dream, I went home and grumbled about having to do some more pointless analogy therapy that ultimately would do nothing for me. I then opened the workbook and what was in there was fascinating.
The Porch Theory is this idea that your life is built like a porch. (I need to add here that I am not a carpenter, have built stage set pieces, and am fully aware that what follows is not actually a good way to build a porch.) There is a poured foundation made of concrete. On top are four main support beams. Covering those are the long pieces of wood that make up the porch. Then comes the stain/paint and the decorations. Each part of the porch represents something different. The foundation is what your every action stems from. This is the root cause of everything you do. Then the foundation beams are the four main focuses your brain has. The long pieces of wood are your values that stem from those main focuses (which are influenced by the foundation). And then comes the paint/stain, which is the actions that you do and your outward symptoms, caused by the values which stem from the focuses that are influenced by the foundation.
In my dream, I did two written exercises. The first was to analyze my life starting from the paint and working my way back to the foundation. Then I labeled a diagram of my current "porch" with what I had written. This exercise took a long time, even in dream world. I ended up skipping around to the different parts of the "porch" as I tried to make sense of everything. The end result was me staring at this "porch," feeling as though I had been laid bare onto paper. My paint, the outward manifestation of my inward life, included like "people pleaser," "excessive apologizing," "panic and anxiety attacks," "sobbing," "anger towards my health," "shame over needing mobility devices, medications, etc," and "going to countless doctor appointments even though I know this doctor isn't the one for me." I could go on, but you get the point. The long pieces of wood, the values, were things like "religion," "putting family and friends above health," "getting the highest education possible," "being the best," "keeping a clean house at all costs," "forcing my body to stay healthy as much as possible," and "working a good job". The four main support beams were "Not wanting to be abandoned," "Not wanting anyone to regret being around me," "Not wanting to be a burden," and "Thinking everyone else deserves more/better than I do." My foundation was Fear and Worthlessness.
After I did this exercise, I found myself back in the dream therapist's office, sobbing and holding my husband's hands as I told her all about my porch. What could I do? This seemed like a horrible life I'd created for myself, and I felt hopeless about it.
She told me that yes, this is a terrible porch. It is, at its foundation, flawed. She told me that I couldn't expect a beautiful life when my thinking was all stemming from places of fear and worthlessness the same way that I shouldn't expect a porch with a nasty, cracked foundation and rotting wood to be an amazing place to have lemonade and iced tea during the summer with my husband. She told me it wasn't my fault that my porch is shit. She jokingly told me that with the life I've lived, she was surprised the whole damn house hadn't fallen apart. I couldn't stop crying. She got down on my level, looked me in the eyes and quietly asked me if I was ready for a new porch. I told her yes, but how the hell do I do that? She nodded solemnly and said, "Renovations."
She then had me do the second exercise in the workbook. The second exercise was, "Describe your dream porch (aka ideal life/values/etc.). My dream porch's outward appearance were things like "singing in the shower again," and "smiling," and "enjoying time with friends," and "happiness," and "baking" and "painting". My porch boards, my values, were made up of "Living in the moment," "Gratefulness," "Finding contentment," "Loving friends," "Relationship with husband," and others I can't remember right now. The four beams were "mental health," "healthy marriage," "physical health," and "hope." And the foundation? It was Self Love.
Sounds great, right? But how to get there? SallySusan the Dream Therapist was a little hazy on this one, but told me that every time I am having an outward symptom or thought that echoes the nasty porch, to think of the ideal porch and try to follow along with what I think that would look like. For example, if I find myself crying over how messy the house is, I should take a step back and realize that this comes from that gross foundation. I can then try to remind myself of how I want to be thinking. AKA, "Yes, the house is messy but it actually isn't hurting anyone and hey, isn't it great that husband and I have been resting and going places and having fun and yeah, we haven't had time to clean the house but look at all we've done this week!" or "Yes, the house is messy but it actually isn't hurting anyone and if it is, I can ask husband for help because I don't have to do it all by myself and it isn't horrible to ask him to help and we could play music and it could actually be fun!" or "Yes, the house is messy but no, you haven't 'done nothing' all week, you've taken all your pills on time and rested your joints and remember that one time you pet your dog? That was pretty awesome! And it's okay to focus on your health. Remember those beams on your dream porch? It's okay." She told me that I was going to need to go right down to the foundation and change it and then the other changes would follow.
My dream therapist told me that this was going to be nasty, messy work. She told me to think of it like any renovation. There will be setbacks. She told me that any time I experience a setback while working toward this "new porch" and feel like I'll never get there, to just think of it as a construction issue and forgive myself. There might be termites living in the wood of the porch, waiting to be exposed. The renovation crew might take unexpected holidays and leave me with a shattered mess to work around for weeks. Maybe there's some electrical wiring that needs to be replaced. Perhaps we'll get the porch built and realize that the foundation was never actually touched, the crew just said they did it and we have to tear the whole thing apart again. She told me that just as re-making a foundation for a house or porch is ridiculously hard and irritating, re-making a foundation for my life will be, too. And just like porches continually need weather-proofing, the occasional board replacement, re-painting, and other regular maintenance, keeping myself healthy will require constant work. But she told me to look forward to the days when I can sit out on a nice porch, sipping iced tea on a lounger next to my husband and watching the sunset.
Although it was a dream, I'm going to follow along with the Porch Theory and see if it works. Feel free to join me. If you'd like, you can share your own "Dream Porch" with me in the comments or on my Facebook page, Instagram, or Twitter.
Sunday, April 16, 2017
I'M A PUBLISHED AUTHOR (and other news)
You guys! I am a published author! I'm an official contributor to The Mighty! And I'm currently on the front page as a Featured Story. I'm over the moon, dancing on air, etc. etc. Read the story here and give me a like and maybe a comment if you like it. I wouldn't hate it if you share the article with your friends, either.
My parents are coming for a visit this week and I'm very excited to share my home and my city with them. My husband and I have come up with a list of mini adventures to take them on. We'll try to take some pictures for you all, but we'll more likely be too busy enjoying the moment to capture it on camera.
I currently have a cold, muscle spasms, and viral pink eye in both eyes accompanied by a sore throat. I went to the ER last week for two IV bags of fluid, as my body wasn't processing the water I was putting in it and I was severely dehydrated. I ended up in the ER for the second time in two weeks with a left eye so swollen I couldn't see. We met with an amazing doctor and he gave me eye drops that already have reduced the swelling almost completely. I do enjoy medicine when it works well. My husband has told me that this is my body's way of making me take the rest that it needs. He has been urging me to take days off for weeks, and now I am forced to rest and sleep and not touch anything, as the infection is incredibly contagious and I have two dogs and a husband I could infect if I am not careful. I'm actually grateful for this, in a weird way. I cannot get the manic side of me to let me rest unless I have no choice. And now I have no choice. Take that, manic tendencies!
I wish you all could have the joy of watching baby Jeph discover the wonder of squeaky chew toys. He loves to cuddle with them. He loves to chew them. He loves to lick them. He loves to roll around on top of them on the ground. He loves to fight over them with Riley. As I type this, I am slowly going deaf from an extremely happy pup chewing on his orange plastic squeaky bone on the couch next to me.
Mr. Jeph is learning very quickly. And I'm learning how to work with him more effectively. He needs a very different type of training approach than Riley did. He is full of energy and eager to please. And, bonus points, he is very food motivated! He will do whatever it takes to get that training treat. But since he is a puppy, sometimes he thinks that whatever it takes to get that training treat means attacking the hand with the treat in it, barking at the hand with the treat, rolling around on the floor, and various other adorable antics. It is hard to not get frustrated with him at times. But, just like a human student, if an approach isn't working, the teacher should try a different approach. He has learned "Sit," "Wait," "No Voice (a variation of "Quiet"), "With Me (a variation of "Heel"), "Leave It," and is starting to understand "Lie Down." He also knows to wait quietly for me to take his leash off when we come home from a walk or the dog park. He knows to sit and wait for his food at mealtimes. He understands the humans do not like being chewed on. He is beginning to understand Bedtime, and even voluntarily goes to his kennel when he is tired. He has made great strides with his confidence around other dogs. He no longer pees on me when he sees another canine, but he does take refuge between my feet when overwhelmed. He has been to the mall, an auto parts store, and a grocery store. He is also beginning to get wheelchair trained, as my new ride Priscilla (my manual wheelchair) will be a permanent fixture in our house now. And the accidents have nearly disappeared! After such a long time, I think it is safe to say that our potty training problem might be nearly solved. Jeph does keep having small accidents when he is asleep, as his body completely relaxes and he leaks. But overall, we are making strides and we will get to our goals eventually.
For months, my husband has been talking to me about me finding a hobby I can do. My old hobbies are not available to me with my current health state. He has also drawn out of me my love for Barbies. I used to be an avid collector. I had hundreds of Barbies, Skippers, Stacies, Kellys, and all their houses, zoos, doctors offices, animals, farms, cars, basically anything I could get my hands on. I would spend hours staging the houses with little utensils and plates perfectly placed on the dining table, the rubber ducks sitting on the side of the Barbie tub, and the living room arranged for maximum entertaining potential. I also loved creating outfits out of scraps of fabric, paper, yarn, anything I could find. For Easter, my husband surprised me with four Barbies from the new Fashionistas line! This is the line with four body types! They are: the original Barbie proportions, a "curvy" doll, a "petite" doll, and a "tall" doll. I'm just so excited because these Barbies are really amazing and their proportions are true to life! And just like that, my new hobby became clear. I'm going back to my old hobby with a twist. I'm going to be creating doll clothes for these new real-life-proportions Barbies! I'm just absolutely in love with the idea of creating fashion for these little dolls with my own hands. And I'm marathoning Project Runway for inspiration. And who knows, if I get good enough, I could sell some. But the point of the hobby isn't to make money, it's to have fun. And I'm so ready to have fun!
I think that this is all the updates for tonight. I'm off to take a nap and take some more virus medication. Love to you all!
My parents are coming for a visit this week and I'm very excited to share my home and my city with them. My husband and I have come up with a list of mini adventures to take them on. We'll try to take some pictures for you all, but we'll more likely be too busy enjoying the moment to capture it on camera.
I currently have a cold, muscle spasms, and viral pink eye in both eyes accompanied by a sore throat. I went to the ER last week for two IV bags of fluid, as my body wasn't processing the water I was putting in it and I was severely dehydrated. I ended up in the ER for the second time in two weeks with a left eye so swollen I couldn't see. We met with an amazing doctor and he gave me eye drops that already have reduced the swelling almost completely. I do enjoy medicine when it works well. My husband has told me that this is my body's way of making me take the rest that it needs. He has been urging me to take days off for weeks, and now I am forced to rest and sleep and not touch anything, as the infection is incredibly contagious and I have two dogs and a husband I could infect if I am not careful. I'm actually grateful for this, in a weird way. I cannot get the manic side of me to let me rest unless I have no choice. And now I have no choice. Take that, manic tendencies!
I wish you all could have the joy of watching baby Jeph discover the wonder of squeaky chew toys. He loves to cuddle with them. He loves to chew them. He loves to lick them. He loves to roll around on top of them on the ground. He loves to fight over them with Riley. As I type this, I am slowly going deaf from an extremely happy pup chewing on his orange plastic squeaky bone on the couch next to me.
Mr. Jeph is learning very quickly. And I'm learning how to work with him more effectively. He needs a very different type of training approach than Riley did. He is full of energy and eager to please. And, bonus points, he is very food motivated! He will do whatever it takes to get that training treat. But since he is a puppy, sometimes he thinks that whatever it takes to get that training treat means attacking the hand with the treat in it, barking at the hand with the treat, rolling around on the floor, and various other adorable antics. It is hard to not get frustrated with him at times. But, just like a human student, if an approach isn't working, the teacher should try a different approach. He has learned "Sit," "Wait," "No Voice (a variation of "Quiet"), "With Me (a variation of "Heel"), "Leave It," and is starting to understand "Lie Down." He also knows to wait quietly for me to take his leash off when we come home from a walk or the dog park. He knows to sit and wait for his food at mealtimes. He understands the humans do not like being chewed on. He is beginning to understand Bedtime, and even voluntarily goes to his kennel when he is tired. He has made great strides with his confidence around other dogs. He no longer pees on me when he sees another canine, but he does take refuge between my feet when overwhelmed. He has been to the mall, an auto parts store, and a grocery store. He is also beginning to get wheelchair trained, as my new ride Priscilla (my manual wheelchair) will be a permanent fixture in our house now. And the accidents have nearly disappeared! After such a long time, I think it is safe to say that our potty training problem might be nearly solved. Jeph does keep having small accidents when he is asleep, as his body completely relaxes and he leaks. But overall, we are making strides and we will get to our goals eventually.
For months, my husband has been talking to me about me finding a hobby I can do. My old hobbies are not available to me with my current health state. He has also drawn out of me my love for Barbies. I used to be an avid collector. I had hundreds of Barbies, Skippers, Stacies, Kellys, and all their houses, zoos, doctors offices, animals, farms, cars, basically anything I could get my hands on. I would spend hours staging the houses with little utensils and plates perfectly placed on the dining table, the rubber ducks sitting on the side of the Barbie tub, and the living room arranged for maximum entertaining potential. I also loved creating outfits out of scraps of fabric, paper, yarn, anything I could find. For Easter, my husband surprised me with four Barbies from the new Fashionistas line! This is the line with four body types! They are: the original Barbie proportions, a "curvy" doll, a "petite" doll, and a "tall" doll. I'm just so excited because these Barbies are really amazing and their proportions are true to life! And just like that, my new hobby became clear. I'm going back to my old hobby with a twist. I'm going to be creating doll clothes for these new real-life-proportions Barbies! I'm just absolutely in love with the idea of creating fashion for these little dolls with my own hands. And I'm marathoning Project Runway for inspiration. And who knows, if I get good enough, I could sell some. But the point of the hobby isn't to make money, it's to have fun. And I'm so ready to have fun!
I think that this is all the updates for tonight. I'm off to take a nap and take some more virus medication. Love to you all!
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