This is very personal, but I'm sharing because it helped me. Hope it helps someone else, too. It refers to my late sister Monica. She passed in 2015 after fighting 5 years with breast cancer. Finally, it metastasized to her brain. I think she would be pleased in knowing how love for her helps me still. Its likely I will get time lines wrong, because of my own fog, or distance, and I do not make any assumptions to know how she felt during these times. And I don't compare what I endure to cancer. Its different. I want to share this experience with some others who are suffering and don't know what true self-love sounds like. I figured it out last night.
Yesterday, I had a good day until about 1pm. Then my body turned to the "oh, lets let each nerve have a loud voice right now" channel. I laid in bed, observing myself, my pain, not emotionally connected. I had pain in my ears. In the webbing of my fingers, I felt pain. Everything was turned on. It was overwhelming. And, serendipitously, I'm in the middle of a really good how-to-cope-with-chronic-illness book called Chronic Babe 101 by Jenni Glover. She writes from a place of self-love. You can feel it in her words. I needed to love myself during that flare yesterday, I knew that was all there was to do. There wasn't anything "of this world" that would help. I intuitively sensed that it would be a short-lived flare, and I just had to endure. (It is gone this morning, by the way.)
So, here's how I spoke to myself. Differently than I ever have before. I remembered my first conversation with Monica after hearing about her diagnosis of breast cancer. She had a young daughter and a 6 month old baby. She was devastated. As her older sister, I had the phone conversation that you just never want to have. I got the gift of being present with her in her heartbreak and fear. I got to say "Oh, honey, I'm so sorry. I'm so sorry." I got to cry with her on this end of the line, as she lived in FL, and I live in TX. I got to have this kind of compassionate conversation ONE time. Her choice was to protect her kids from knowing about her illness, so I don't remember talking to her again when there weren't little ears listening, so, illness wasn't mentioned. I got all my info regarding it from my folks, who saw her daily. They were aware of it at the end, of course, as she became quite sick, and passed at home. But, I can only remember being present in a place of her pain, that kind of heartbreak, that one time. That initial conversation. So, yesterday, I spoke to myself in the tone of that one phone call. I spoke to myself, lying in bed, in exquisite, really remarkable pain, as I did that day to my baby sister. It was love. Only love. Nothing else. Not problem-solving, not fixing. Not deflecting because of discomfort. Not judgment of any kind. Just love. I imagined how heart-broken I was, and I wrapped my own arms around myself in pure acceptance and love. I was present with it. Entirely present. I honored it. I didn't try to move it along. I didn't feel any anxiety about the level of pain, as I have done in the past. I just let it be there. I knew, logistically, that my needs were provided for me. And after T was in the house with me, I knew I had help if it came to that. So, I was fairly paralyzed in bed from it. But, there was no fear, no despair, no sadness. Not this time. I remembered my Monica. I spoke to myself as I would have to her. And it got me through the flare.
This is self-love talk. I have FINALLY figured it out. I'm going to practice it often, so it becomes habit, and pain becomes something that I can exist a little easier alongside.
So, sweet, sweet Monica, this one is for you. Thank you for so many things, but most recently, for helping me to remember what love sounds like.
Have happy days.
M
Tuesday, May 8, 2018
Monday, May 7, 2018
The First of 2018
It’s been a long time since an update for you five folks who
follow me. Lol. Here is what I have been
attending to since October.
On October 14, 2017, I got a migraine, triggered by the
smell of a driver. That headache stayed
severe until I was finally hospitalized on December 10. Administration of IV DHE brought it down from
10 to 5, and that took all 5 inpatient days.
Shortly after returning home, it was severe again. I began Botox at the end of January. Beginning in early February, I started seeing
a chiropractor 3 times a week. My neck
was found to be curved in the wrong direction.
Now, in late April, I am not debilitated by headache every day. I take
my bath by nightlight. I still have head
pain daily, but it is getting better and better. I got a second Botox treatment in April, and
I continue to see chiropractor. I am
photophobic to the point now of needing tinted glasses all the time. But, I am progressing. I have successfully switched away from belly
sleeping position. I am working on the
Muldowney Protocol for strengthening and stabilizing my muscles, so that joints
can be stable, even though the connective tissue is weak. I have battled depression this winter, not
being well enough to leave my bedroom for over 2 months. But, I am back in therapy, back with friends. Progress.
So, you could say, it has taken every bit of my energy just
to cope with this particular hand of cards for 7 months. I enjoy writing here so much. And I think I do have some valuable insights
to share sometimes. I missed it, but it
was impossible.
I am grateful. I keep
gratitude in my heart, as my treasure.
Today, my head pain is still under a 5, while my body pain is at a
9. I lack strength enough to hold onto a
dish. My quality of life is so much
higher than it was a few months ago. I
have support. People love me and check
on me. I am blessed. All my basic care and many luxuries are
provided for me.
My good friend and writer, Margaret Schroeder, interviewed me part of the way through the winter. She did a great job. It is here. My first podcast appearance, but not my first interview with her.
My good friend and writer, Margaret Schroeder, interviewed me part of the way through the winter. She did a great job. It is here. My first podcast appearance, but not my first interview with her.
The pain I feel is just connected to my Earthly, physical,
carbon-based body. It is not in me. Not in my soul. But, it does limit me. It does affect my soul. I grieve.
I’m thankful that now, with less head pain, I can cry again. Crying with a severe migraine is a
no-go. Now, I can properly express how
sad this occasionally feels. A good one
is coming on soon.
Have happy days.
M
The First 10
Drafted on 10/14/17
Last night was the first time in my journey that I've told a medical professional my pain was at the top of the scale. They ask, on a scale of 1-10, 1 being not at all and 10 being the worst you've ever felt, what is your pain like? I've never told anybody, even myself, that my pain was above 9.5. But last night, I broke that mold. It was a 10. And I still wouldn't admit it. My husband had to sort of give me permission to use the number, making me understand that I wouldn't be quizzed on it later. Helping me to see that, this nurse in the ER, he doesn't see how much pain I live with each day. This is not a test. He just needs to understand how uncomfortable I am, how much I am enduring, suffering. That extra .5 that you are hanging onto for your own mental stability can be abandoned now, and forever. It is ok if you say your pain is at 10. They're not gonna punch you in your migraine-riddled head and then ask you again, forcing you to say 11. It's safe to say 10 when that is the truth of the feeling. It was last night. Here is the story.
Last night was the first time in my journey that I've told a medical professional my pain was at the top of the scale. They ask, on a scale of 1-10, 1 being not at all and 10 being the worst you've ever felt, what is your pain like? I've never told anybody, even myself, that my pain was above 9.5. But last night, I broke that mold. It was a 10. And I still wouldn't admit it. My husband had to sort of give me permission to use the number, making me understand that I wouldn't be quizzed on it later. Helping me to see that, this nurse in the ER, he doesn't see how much pain I live with each day. This is not a test. He just needs to understand how uncomfortable I am, how much I am enduring, suffering. That extra .5 that you are hanging onto for your own mental stability can be abandoned now, and forever. It is ok if you say your pain is at 10. They're not gonna punch you in your migraine-riddled head and then ask you again, forcing you to say 11. It's safe to say 10 when that is the truth of the feeling. It was last night. Here is the story.
Yesterday, I hadn't had enough sleep when the day started. We needed to go pick up our shopping and run to the PetSmart for the cat food, all of which I ordered online and we just needed to pick up. And I needed to be home by about 11:15 in order to have some lunch before the bus picked me up at 12:05 for my ride to my support group meeting at 1pm. So the day started out not great. Hadn't been able to fall asleep until after 1am. Just not enough rest, that's all.
Lay down on the couch while waiting for the bus, resting, feeling the migraine birth, taking the relievers I have here to take, doing all the things I need to do to help stunt its growth. So, in addition to this, the diarrhea began, just before I was due to leave the house. Increasing my dehydration.
At the support group, which I don't regret attending, by the way, it did get worse. I did laugh, and I was valued and loved, and gave love and value, but, it did get worse. Just by way of stupid flourescent light. But it still was what I'd call reasonable. I was able to take my sunglasses and hat off to take a quick group picture. So, the stars being aligned the way they were, here is the straw that broke this camel-back. The very polite young man who drove my bus (mini-van) home. He was nothing but kindness to me, and I was already very uncomfortable re headache. But, his odor was migraine food. It grew exponentially so that 30 minutes later when we were home, I could barely see. (One thing I could have done in hindsight to prevent some of what I was exposed to was to ask if he could just strap my chair down in front with him, and I would ride in the back, so I wasn't sitting right next to him. But, it might have made little difference.) I got out my trusty peppermint essential oil and rubbed it all over my face, including just barely on the skin up my nostrils. This guy's scent was literally making me ill, and I had to do whatever was at my disposal to survive. I didn't want to vomit, and there was real danger of that. I held the small bottle of oil up to my nose during the whole drive home, with a blindfold on my eyes.
Arriving at home, I was so disoriented, that I fumbled around for my keys, unknowingly pressing the panic button on my home security system. I got a call within seconds. I wasn't remotely able to answer a phone call, nor did I look to see who it was, and let it go. I got inside and Tim greeted me, saying that I'd just set the alarm off, and he just got it turned off. His phone was ringing. He missed the first time, and picked up the second ring. It was the alarm company, ready to send the police to me for my panic alert. So, we were just on this side of keeping the police out of the uncomfortable day. lol
I went straight to my bedroom. I managed to get out of my clothes and laid on my bed with as much comfort as I could manage. A little later, I knew I had to take some action, this was getting serious. So, I went to my bathtub, and I let alternating hot and cold shower streams hit my head. I think I did that for about 20 minutes. I needed help getting out of the tub, so T came and helped. We got me dry and to my bed. I had him give me 10 mg diazepam. That thankfully knocked me out for about an hour and a half. When I woke up, the headache was worse. I discussed with T that the only thing I had to do was to take a muscle relaxer but, that would create a situation where he would have to help me get out of bed and to the bathroom. I wouldn't be able to do anything with my voluntary muscles. And the diarrhea would likely strike again. But, because there wasn't anything else to try, we went forward with that, and he stayed in my room for a bit, because I was scared to be by myself. Just after he left, I was almost asleep again when the vomiting began. After I vomited, I got on my support chat, asking my friends to send up a prayer for me. One of them, thankfully, wisely told me that if vomiting has begun, its time to go to the ER. I thought a shot of Tordol might help. I'd only had this medicine one time before when I let a migraine go for 8 days. At that time, it didn't help a bit. But, I thought for this one, since it was still the first day, that it might. So, I called T and told him I needed to go to the ER for a shot. He got up from bed, and got me some clothes, helped me dress, got my list of meds from my health file, and took me back to the very hospital that my support group met at earlier in the day.
I didn't stop vomiting during the 20 minute drive. Not once. I was dry heaving at the parking lot.
He filled out my forms.
UPDATE: At this point, the piece ends and I did not write again until last week, Apr 29, 2018. I won't go into all that happened during the rest of that particular evening, nor will I take space here to delve into the last 7 months. Suffice to say that it was a hard winter for me, but I have been making progress and quality of life feels high again.
Have happy days.
UPDATE: At this point, the piece ends and I did not write again until last week, Apr 29, 2018. I won't go into all that happened during the rest of that particular evening, nor will I take space here to delve into the last 7 months. Suffice to say that it was a hard winter for me, but I have been making progress and quality of life feels high again.
Have happy days.
Monday, September 11, 2017
September Post
Nothing terribly eventful or exciting has happened lately. Just a monthly post to keep current.
Update on the parallels of Swiss Family Robinson to living with chronic illness: I think I picked out most of them early in the book. It is seen in the attitudes. The rest of the book is the story, which is fictional. Truly fictional, as it has lions and kangaroos, and penguins, and ostrich you can saddle and ride. But, it is enjoyable, and a good escape, which is what I like my reads to be.
I have had some trouble lately with night terrors. After talking it over with friends, it allowed me to give it clarity in my mind so I could talk about it with T and with my therapist. Finally, with a few plans of action to try, the one that has been successful at giving me the most terror free nights is 5-10 mg of Valium. This is a fair trade off to waking up screaming in my mind. My new psychiatrist didn't have any problem prescribing the benzo for me, as now many want patients to see a pain specialist for those meds. I hope they are a temporary sleeping thing and I will periodically try to sleep without the med, in an effort not to depend of the drug. But, since I became afraid to sleep at one point, that is not a fear which I can abide if there is an option.
T and I seem to both be in a really good place both mentally and emotionally. My health is iffy right now as seasons change. One thing that you can bet the farm on is that during a seasonal change, I will be suffering more. My body doesn't like or adapt well to change. Home is a very happy place. He is working out almost daily. He walks the dogs almost daily, which is a new turn of events in the household. Norway the cat has come to be more loving, affectionate and comfortable with us all in the last month or so. He spends time hanging out with us, where before he separated himself. Neither of us are good at engaging him in play. We should work on that.
Grateful that a few friends have reached out to me lately in their own life crises. Grateful that I'm seen as someone who will listen with compassion, without judgment, with love and honesty. Grateful that during those times I was needed to listen, I had the lucidity to do so. It is so important to feel needed and wanted. And being there for them allowed me to feel that. A priceless feeling.
Attempting my first craft show next month, so spending time trying to get inventory for that prepared. My only hope is that I can make the money back that I pay out for the booth. Set expectations low. lol
I am doing fairly well. Symptoms are rampant but, I am happy and well-nourished. I do some active exercise most days. I am eating carefully. I constantly learn about the details of my illnesses, giving me validity that what I experience is a shared issue among my dazzle (my group of zebras).
Today is September 11. I hope and pray that people worldwide can focus on the positives of that day, and not the negatives.
Thankful for my life, grateful that I live far from the sea and any hurricane threat. Thankful that my family weathered the recent storms well.
Have happy days,
Marie
Update on the parallels of Swiss Family Robinson to living with chronic illness: I think I picked out most of them early in the book. It is seen in the attitudes. The rest of the book is the story, which is fictional. Truly fictional, as it has lions and kangaroos, and penguins, and ostrich you can saddle and ride. But, it is enjoyable, and a good escape, which is what I like my reads to be.
I have had some trouble lately with night terrors. After talking it over with friends, it allowed me to give it clarity in my mind so I could talk about it with T and with my therapist. Finally, with a few plans of action to try, the one that has been successful at giving me the most terror free nights is 5-10 mg of Valium. This is a fair trade off to waking up screaming in my mind. My new psychiatrist didn't have any problem prescribing the benzo for me, as now many want patients to see a pain specialist for those meds. I hope they are a temporary sleeping thing and I will periodically try to sleep without the med, in an effort not to depend of the drug. But, since I became afraid to sleep at one point, that is not a fear which I can abide if there is an option.
T and I seem to both be in a really good place both mentally and emotionally. My health is iffy right now as seasons change. One thing that you can bet the farm on is that during a seasonal change, I will be suffering more. My body doesn't like or adapt well to change. Home is a very happy place. He is working out almost daily. He walks the dogs almost daily, which is a new turn of events in the household. Norway the cat has come to be more loving, affectionate and comfortable with us all in the last month or so. He spends time hanging out with us, where before he separated himself. Neither of us are good at engaging him in play. We should work on that.
Grateful that a few friends have reached out to me lately in their own life crises. Grateful that I'm seen as someone who will listen with compassion, without judgment, with love and honesty. Grateful that during those times I was needed to listen, I had the lucidity to do so. It is so important to feel needed and wanted. And being there for them allowed me to feel that. A priceless feeling.
Attempting my first craft show next month, so spending time trying to get inventory for that prepared. My only hope is that I can make the money back that I pay out for the booth. Set expectations low. lol
I am doing fairly well. Symptoms are rampant but, I am happy and well-nourished. I do some active exercise most days. I am eating carefully. I constantly learn about the details of my illnesses, giving me validity that what I experience is a shared issue among my dazzle (my group of zebras).
Today is September 11. I hope and pray that people worldwide can focus on the positives of that day, and not the negatives.
Thankful for my life, grateful that I live far from the sea and any hurricane threat. Thankful that my family weathered the recent storms well.
Have happy days,
Marie
Tuesday, August 15, 2017
Swiss Dazzle Zebranson
I have never read many of the classics, despite my love of reading. I do venture out of my favorite genres occasionally but, there are so many good and entertaining books on my "To Read" list already, that I just can't see Moby Dick or some such being a better choice for me. Well, Audible had a Daily Deal for The Swiss Family Robinson so I thought, why not? That treehouse was one of my favorite places at Disney World, or whichever amusement park housed it.
I am only into it about 5 chapters, and I am LOVING it. It is the epitome of "solve your problems without complaining too much, be grateful for what you have because you could have less, and let's get on with the business of enjoying our lives". I find it a parallel story to becoming chronically ill.
This family, alone, but all together, are stranded on an uninhabited island. The ship transporting them and many others wrecked in the sea and they made it to shore safely, together. Parallel: You no longer inhabit the world you were in, against your will, and now you must figure out how to live in this new place. Also, your dreams for whatever you were headed towards are smashed.
They have to figure out everything that used to be understood. Everything has to be rethought and new solutions must be sought for every purpose. How to cook food? How do we address safety? There is no immediate comfort. Nothing is set up for them to dwell here. Parallel: You can no longer do things the way you used to, the way you've done them for years, the way you were taught. You have to change everything, so as to not hurt yourself. You can't wash dishes the same. You can't prepare food the same. You can't move around in space the same way. No matter what you do, comfort eludes you. All of a sudden, your whole world is foreign and doesn't work for you.
They don't really want to be there. They were on their way to a colony, with the ship full of provisions of every kind to set up a new life. There was food on the ship, and livestock. Weapons, and ammunition. Building materials and tools. They had their cow, pig, donkey, sheep. Mom, Dad, Fitz, Ernest, Jack, and ..... can't remember the fourth boy. They get from the wreckage to the island even though only 2 of them can swim. They just figure out how to use what's in their environment to their advantage. Parallel: You don't want to be where you are finding yourself, either. You had your life set up with your provisions, your stuff you love, your job, your activities. You've got mostly all the same stuff at hand as you used to, but you find now that you can't access the stuff in the same way you could. Or its a cherished item, but now redundant. Or its something you thought useless, and now priceless. You find you new ground. You use what you have to do get stuff done. You knock cereal boxes off high shelves with your cane. You hold on to furniture as you walk around. You listen to your body and sit, even though sitting might be entirely inconvenient. Your set-up is the same, but, you've got to make use of it differently.
Dad is full of wisdom. He is our true leader. He is quick to praise his wife and each offspring and does so with love. He teaches that they must not kill any living thing without need. He states and exemplifies that evil shall not repay evil. He reminds his boys that bitterness at those who left them stranded is misguided and false. Those folks may have perished, or indeed may be starving to death presently. Mom takes on each task with cheer. Communication is open. Steps are taken as much as possible to procure safety for the immediate future. She doesn't display fear, none of them do. Instead, they pray. They pray together. They say they trust God, and then they truly do TRUST Him. Parallel: Life is better when you live in appreciation. This is especially true when chronic illness strikes, in my opinion. It strips away what is superficial in one fell swoop, and what you are left with are your true essentials, for which you are and should be, super grateful. If those essentials include others, and what they do for you, praise and thanksgiving of them and their presence and effort only makes them want to help you more. That is a bit of truth. You sometimes want others who you think are more deserving of this pain to endure what you've got, after all, you're a good person, you didn't do anything wrong to deserve this. What's-her-name, now SHE deserves to live in this pain. But, that's not really true is it? That's evil in your heart, wanting to spread evil because you're miserable. You feel evil has been done to you. It hasn't. Illness is illness. It is neither good nor evil. And it isn't for you to judge what anybody deserves. You are not their creator. Also, there are always people who will be in better positions and in less desirable positions than yours. A fact of every life. Get over it. Be grateful you're not starving to death. Yup, you might only be able to eat certain things without getting sick, but at least you have access to those things. At least you can digest some of it, and you can afford some of it. And it sucks to have to do chores while you feel ill but, its true that if you put your mind in a cheerful place, every single thing that must be done, is easier. Everything. It's important to discuss your situation with your close loved ones, whether they be family or friends. Make sure others know what's going on with you now. How things have changed. How they can help you if they care to. Know that fear is false. It is nothing but your inner bully. Now, prepping for the unknown is different. Thinking about realistic problems that could arise, like, maybe you'll get so worn out in the grocery store that you may fall from exhaustion. You could use a wheelchair or one of the little store carts to solve that problem. But, fear itself, it isn't really real. It has only power you give it. If you decide instead to pray, that's where you place your power. In your faith in the Lord. Prayer gets you through those painful days when you think, surely this is what dying feels like. Prayer keeps your heart grateful for your essentials: your food and water, your dwelling place, your air conditioning and heat, your bed or chair. Your medicine. You become aware, and at peace with the fact that, you control very little. You control how you react, that's mostly it. And you control your relationship with God. If you commit to the second, the first will unfold naturally. You can't just profess to trust. You must take the next step even though the staircase is invisible.
I'm only about 5 chapters into this lovely book, and I'm listening to a fabulous narrator, by the way, and am about to close here to turn it back on while I make my lunch. I love it though. It might be my new favorite. It is the prime example of human beings rising above what hand of cards they are dealt, and still, being perfectly happy folks. Folks who can still laugh, still sing, still find so much joy in everything. Sometimes life just sucks. But, you still can figure out how to get a cow, several sheep, a donkey, and a sow from their hold in a wrecked ship onto land, if you really try. (It involves tying a lot of casks to them for flotation and then linking them all together in a parade fashion, and unceremoniously throwing them into the ocean, one by one, watching them all sink, and then float back up.)
My title of Swiss Dazzle Zebranson is my EDS homage to them. Since I do have Hypermobile Ehlers Danlos Syndrome, as one of my unique superpowers, I get to be known to doctors and to other EDSers as a Zebra. Non-EDS folks are the horses. We are different in a way that is unique to each of us, since no two zebras have the same stripes. A dazzle, I just learned yesterday, is a group of zebras. So, instead of using Family, as the book title, I'm using Dazzle because I love it, and I am uniquely part of the world of Zebras too, now. I will never not be a Zebra again. Just like I will always be my parents child. So, Swiss Dazzle Zebranson is born.
I will continue my parallels, I'm sure, but that's what I wanted to share today. It's a beautiful world, strive to be happy, even in difficult circumstances. So grateful that I can say I am. I do have blue days. But not today. Today is yellow.
Have happy, happy days all.
I am only into it about 5 chapters, and I am LOVING it. It is the epitome of "solve your problems without complaining too much, be grateful for what you have because you could have less, and let's get on with the business of enjoying our lives". I find it a parallel story to becoming chronically ill.
This family, alone, but all together, are stranded on an uninhabited island. The ship transporting them and many others wrecked in the sea and they made it to shore safely, together. Parallel: You no longer inhabit the world you were in, against your will, and now you must figure out how to live in this new place. Also, your dreams for whatever you were headed towards are smashed.
They have to figure out everything that used to be understood. Everything has to be rethought and new solutions must be sought for every purpose. How to cook food? How do we address safety? There is no immediate comfort. Nothing is set up for them to dwell here. Parallel: You can no longer do things the way you used to, the way you've done them for years, the way you were taught. You have to change everything, so as to not hurt yourself. You can't wash dishes the same. You can't prepare food the same. You can't move around in space the same way. No matter what you do, comfort eludes you. All of a sudden, your whole world is foreign and doesn't work for you.
They don't really want to be there. They were on their way to a colony, with the ship full of provisions of every kind to set up a new life. There was food on the ship, and livestock. Weapons, and ammunition. Building materials and tools. They had their cow, pig, donkey, sheep. Mom, Dad, Fitz, Ernest, Jack, and ..... can't remember the fourth boy. They get from the wreckage to the island even though only 2 of them can swim. They just figure out how to use what's in their environment to their advantage. Parallel: You don't want to be where you are finding yourself, either. You had your life set up with your provisions, your stuff you love, your job, your activities. You've got mostly all the same stuff at hand as you used to, but you find now that you can't access the stuff in the same way you could. Or its a cherished item, but now redundant. Or its something you thought useless, and now priceless. You find you new ground. You use what you have to do get stuff done. You knock cereal boxes off high shelves with your cane. You hold on to furniture as you walk around. You listen to your body and sit, even though sitting might be entirely inconvenient. Your set-up is the same, but, you've got to make use of it differently.
Dad is full of wisdom. He is our true leader. He is quick to praise his wife and each offspring and does so with love. He teaches that they must not kill any living thing without need. He states and exemplifies that evil shall not repay evil. He reminds his boys that bitterness at those who left them stranded is misguided and false. Those folks may have perished, or indeed may be starving to death presently. Mom takes on each task with cheer. Communication is open. Steps are taken as much as possible to procure safety for the immediate future. She doesn't display fear, none of them do. Instead, they pray. They pray together. They say they trust God, and then they truly do TRUST Him. Parallel: Life is better when you live in appreciation. This is especially true when chronic illness strikes, in my opinion. It strips away what is superficial in one fell swoop, and what you are left with are your true essentials, for which you are and should be, super grateful. If those essentials include others, and what they do for you, praise and thanksgiving of them and their presence and effort only makes them want to help you more. That is a bit of truth. You sometimes want others who you think are more deserving of this pain to endure what you've got, after all, you're a good person, you didn't do anything wrong to deserve this. What's-her-name, now SHE deserves to live in this pain. But, that's not really true is it? That's evil in your heart, wanting to spread evil because you're miserable. You feel evil has been done to you. It hasn't. Illness is illness. It is neither good nor evil. And it isn't for you to judge what anybody deserves. You are not their creator. Also, there are always people who will be in better positions and in less desirable positions than yours. A fact of every life. Get over it. Be grateful you're not starving to death. Yup, you might only be able to eat certain things without getting sick, but at least you have access to those things. At least you can digest some of it, and you can afford some of it. And it sucks to have to do chores while you feel ill but, its true that if you put your mind in a cheerful place, every single thing that must be done, is easier. Everything. It's important to discuss your situation with your close loved ones, whether they be family or friends. Make sure others know what's going on with you now. How things have changed. How they can help you if they care to. Know that fear is false. It is nothing but your inner bully. Now, prepping for the unknown is different. Thinking about realistic problems that could arise, like, maybe you'll get so worn out in the grocery store that you may fall from exhaustion. You could use a wheelchair or one of the little store carts to solve that problem. But, fear itself, it isn't really real. It has only power you give it. If you decide instead to pray, that's where you place your power. In your faith in the Lord. Prayer gets you through those painful days when you think, surely this is what dying feels like. Prayer keeps your heart grateful for your essentials: your food and water, your dwelling place, your air conditioning and heat, your bed or chair. Your medicine. You become aware, and at peace with the fact that, you control very little. You control how you react, that's mostly it. And you control your relationship with God. If you commit to the second, the first will unfold naturally. You can't just profess to trust. You must take the next step even though the staircase is invisible.
I'm only about 5 chapters into this lovely book, and I'm listening to a fabulous narrator, by the way, and am about to close here to turn it back on while I make my lunch. I love it though. It might be my new favorite. It is the prime example of human beings rising above what hand of cards they are dealt, and still, being perfectly happy folks. Folks who can still laugh, still sing, still find so much joy in everything. Sometimes life just sucks. But, you still can figure out how to get a cow, several sheep, a donkey, and a sow from their hold in a wrecked ship onto land, if you really try. (It involves tying a lot of casks to them for flotation and then linking them all together in a parade fashion, and unceremoniously throwing them into the ocean, one by one, watching them all sink, and then float back up.)
My title of Swiss Dazzle Zebranson is my EDS homage to them. Since I do have Hypermobile Ehlers Danlos Syndrome, as one of my unique superpowers, I get to be known to doctors and to other EDSers as a Zebra. Non-EDS folks are the horses. We are different in a way that is unique to each of us, since no two zebras have the same stripes. A dazzle, I just learned yesterday, is a group of zebras. So, instead of using Family, as the book title, I'm using Dazzle because I love it, and I am uniquely part of the world of Zebras too, now. I will never not be a Zebra again. Just like I will always be my parents child. So, Swiss Dazzle Zebranson is born.
I will continue my parallels, I'm sure, but that's what I wanted to share today. It's a beautiful world, strive to be happy, even in difficult circumstances. So grateful that I can say I am. I do have blue days. But not today. Today is yellow.
Have happy, happy days all.
Saturday, July 8, 2017
Betrayal
So, I am not hurt anymore, but I was last night. Truly teary-eyed hurt, and betrayed. I mentioned this therapy in one previous blog post but, only in passing, I think. For the last 4 months, I've been having electro-pain management therapy by a therapist, lets call her Henrietta. It has come to our (mine and Tim's) awareness now that she is manipulating me. A large bill was sent a few weeks ago, at which time I immediately cancelled the next appointment. I texted that I wasn't comfortable spending that much on the therapy (I hadn't gotten any bill from March until the very end of June, so I didn't know how much it was costing each month.) Now, let me stop here and mention that this therapy helps me. It is hard to know how much since life and my condition is so fluid, but it definitely does help me, and without any side-effects. And, Henrietta is the only therapist of her kind in my city. There aren't any other choices for me to go see. So, let me say that I mention that I usually look forward to it, not the bus ride there and back, but the therapy session, yes.
Well, it has become clear that she is trying to bill me twice for my treatment. There should be no bill whatsoever, or maybe one for under $20ish, but certainly not several hundred dollars. Her reply to my original text was to call me and tell me that she "thought what was happening was that the billing specialist had not applied any of my co-pays to my balance" and that she would have them call me that afternoon. Also, she said she "never wants me to cancel an appointment due to money".I said ok, and I rescheduled that week's appointment. So, at the next appointment, I was in a crap cognitive state and she didn't mention anything about the bill. Nor did I. But, she was very, very nurturing. She took more careful care of me than ever before. She even asked me what else she could do for me before the session ended. She's never been nearly that patronizing before. Just sort of "kissed my a__". Which feels like a good thing when you live in chronic pain, to have someone nurture you so much, but it was unusual.
More than 2 weeks went by and the office never called about the large balance. I texted her asking about it, blaming Tim, saying that he didn't want me having any more treatments until we understood what we owed. Her text reply was that my copay was $45, not $40, per Shannon, who must be her billing specialist. I replied, "what about the over $400.00 balance?" She said, "bring me the bill when you come on Tuesday." This is no mistake. This is not incompetence. This is manipulation of me. She is counting on me feeling too crappy to have the strength to confront her, which is true. She is also counting on the fact that this treatment is the only one I have found that helps me, which is also true, which she knows because I told her, repeatedly. She's been told now that my Tuesday appointment is cancelled. I offered no reason or excuse. I feel compelled to do that, because I think it's expected of me, but, I am now convinced by my spouse that it's unnecessary.
She provided therapy that helped. I have tried many, many therapies that have not helped. It is covered by my insurance. It is in a part of town I can actually get myself to and from. She, and here is where I'm hurt, pretended to care about me and my health. She advised. She instructed. She even scolded to some degree. But, I felt cared for. I felt taken care of. But, I'm really, an opportunity to double-bill. Nothing more. So, Henrietta, I am breaking up with you. I don't have the physical or mental strength to confront her about the issue. But my spouse does. And he is taking up the reins. And I am going to leave it in his hands. I am going to think no more of it. Let it go. But, it is betrayal. Just because I was paying her copay, it is not any less betrayal.
Grateful that I can even afford therapy like this. Grateful that my pain isn't so blinding that I'm willing to let her continue to defraud me. Praying it won't get to that point.
Have happy days, and watch out for yourselves.
Well, it has become clear that she is trying to bill me twice for my treatment. There should be no bill whatsoever, or maybe one for under $20ish, but certainly not several hundred dollars. Her reply to my original text was to call me and tell me that she "thought what was happening was that the billing specialist had not applied any of my co-pays to my balance" and that she would have them call me that afternoon. Also, she said she "never wants me to cancel an appointment due to money".I said ok, and I rescheduled that week's appointment. So, at the next appointment, I was in a crap cognitive state and she didn't mention anything about the bill. Nor did I. But, she was very, very nurturing. She took more careful care of me than ever before. She even asked me what else she could do for me before the session ended. She's never been nearly that patronizing before. Just sort of "kissed my a__". Which feels like a good thing when you live in chronic pain, to have someone nurture you so much, but it was unusual.
More than 2 weeks went by and the office never called about the large balance. I texted her asking about it, blaming Tim, saying that he didn't want me having any more treatments until we understood what we owed. Her text reply was that my copay was $45, not $40, per Shannon, who must be her billing specialist. I replied, "what about the over $400.00 balance?" She said, "bring me the bill when you come on Tuesday." This is no mistake. This is not incompetence. This is manipulation of me. She is counting on me feeling too crappy to have the strength to confront her, which is true. She is also counting on the fact that this treatment is the only one I have found that helps me, which is also true, which she knows because I told her, repeatedly. She's been told now that my Tuesday appointment is cancelled. I offered no reason or excuse. I feel compelled to do that, because I think it's expected of me, but, I am now convinced by my spouse that it's unnecessary.
She provided therapy that helped. I have tried many, many therapies that have not helped. It is covered by my insurance. It is in a part of town I can actually get myself to and from. She, and here is where I'm hurt, pretended to care about me and my health. She advised. She instructed. She even scolded to some degree. But, I felt cared for. I felt taken care of. But, I'm really, an opportunity to double-bill. Nothing more. So, Henrietta, I am breaking up with you. I don't have the physical or mental strength to confront her about the issue. But my spouse does. And he is taking up the reins. And I am going to leave it in his hands. I am going to think no more of it. Let it go. But, it is betrayal. Just because I was paying her copay, it is not any less betrayal.
Grateful that I can even afford therapy like this. Grateful that my pain isn't so blinding that I'm willing to let her continue to defraud me. Praying it won't get to that point.
Have happy days, and watch out for yourselves.
Wednesday, July 5, 2017
My Poor Sweet Little Subconscious
I feel bad for her. When I am awake and in my knowing state, and have the ability to access my faith, my friends, my family, my spouse, my dogs and cat, I really can say without reservation that I don't have fear related to being disabled. Honestly, I don't. But, the deepest part of me might still. When I dream, I dream of not being able to save myself from something due to the limitations of my disability. I know that lots of folks dream of suddenly not being able to run when they need to or can't move their (whatever body part) when they want to, and someone is lurking or chasing them, yadda, yadda. For me, my dreams are more specific. I am always in a dire, catastrophic situation and I always cannot physically move my body quickly enough to avoid being hurt or killed. (Sometimes, I cannot get anybody to help me, despite the begging.) Last night's dream was new. I was on a college campus, and one very good high school friend was with me. I left lunch early, alone, walking with great difficulty with my cane, on my way to the Science buliding. As I passed by another building, I got about 20 feet away from it when it collapsed on top of me. As it fell, I tried to move faster down the sidewalk, and I couldn't. So I dove for cover underneath a bench. And I did survive the disaster, but I also lost part of myself. One of my fingers. So, I am not as fearless as I claim to be, or want to be. Or maybe the primal part of me is always going to fight for survival and strive for it, even though I am peaceful with the concept of meeting Jesus. Probably that's a biological thing, just like fighting for air when you are drowning. I'm tired of waking up thinking, man, if I hadn't been in that wheelchair, I'd have been able to get down the stairs and away from (whatever). What it really means is that in my subconscious, she knows that I am permanently changed. I'm not able to protect and save her child-like innocence. She is at the mercy of what happens, as am I. She is scared. I'm not, but I'm awake. Don't get me wrong, I'm not welcoming death any time soon, but I am absolutely ok with it when it happens. I love life, and I avoid danger, but I am not afraid of dying. This life has shown me what faith really is, and how much My Father adores me. That being said, a whole building did fall on top of me last night. And I lost part of myself. And, if I hadn't been disabled, I might have saved myself. I might not, but, in this situation, I physically could not. Subconcsious me is a bit sad when I wake up from those dreams.
Grateful that I haven't had any buildings fall on me. And for the nice, safe, comfortable one I sit in now.
Have happy days.
Grateful that I haven't had any buildings fall on me. And for the nice, safe, comfortable one I sit in now.
Have happy days.
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