I don't fully recall what the elements in my dream were. What I remember was waking up from it startled and yelling. Whenever I have a dream that wakes me like that, I try to stay awake for just a few minutes at least, so I don't return to it. Maybe some details will come back to me as the day unfolds and if so, I'll add them. Here is what I learned during my few minutes reflecting on my dream. Without these chronic illnesses, my life would not be so enriched. Without them, I would be less compassionate and less empathetic. I did have both qualities before they struck, but now the measure is far higher. I would be very busy. Without being so busy by stuff in the world, I have time and opportunity to reflect on things, on myself. I recognize when help is needed and I do so if I can. I would not have friends who are also suffering, but also very compassionate, supportive, non-judging, empathetic folks too. They'd be different. I'd not have met the people who I now count as important to me. I'd have a different sort of marriage, and I'd be a different sort of daughter/sister. I might have become a mother, but there's a chance I'm a better Aunt now than I may have been able to be if I had my own kids. My perspective is so wide open. I share these thoughts because it lets me genuinely see some issues as positives, where before I have only been able to see them as negatives or at best, as facts.
I am grateful today to have the house to myself and also to not have to go anywhere. I have a silly movie on about a man trapped in a cat's body. I am trying to enjoy the day. The weather isn't good enough for me to spend time outside. So, I am going to bake some crackers, maybe banana bread. I am going to let myself have up days and down days. I am going to let myself do things that make my life more comfortable and easy without feeling guilt. Like bringing myself home early, rather than waiting for a bus for hours.
This may seem like an odd a vague post. But, it is part of my truth. Part of my story. Part of reality, my reality.
Grateful today for, believe it or not, these chronic illnesses and for who I am with them.
Have happy days. Grateful days. Loving days.
Thursday, May 18, 2017
Saturday, May 13, 2017
Letter from Me
My Dearest, Sweet Marie,
I am so proud of you. You did it! Among all your illnesses, the worst one raised her head up yesterday and she really got to you. But, you, darling, you remembered that she's a LIAR. I was with you in the Arboretum, glorious as it was in all the blooms, on the edge of the lake. I saw everything beautiful that you saw. I felt the love there among all the families, children, old folks. And I could not let you enjoy it. I am your Sparkle. I am the purest part of you. When the LIAR starts spewing her nonsense, sometimes, if you can't chase her off right away, I know it feels like I have left forever. That's why I'm so proud. You remembered that I can never leave forever. I am who you are. I just have to retreat a bit when she throws a dark, wet, cold blanket over me. I am quieted to the point where you can't hear me. But you, my love, you could feel me and my presence, and that is why you are here today, and unhurt. I admit, I did retreat. She is terrifying, yelling all those horrible lies at you. Telling you things that are simply and clearly not true. And you get weakened because, there are threads of truth to her statements. But only threads. She wants you to buy in to her whole cloth, and it is easy to do in the face of her screaming. That's her manipulation of your weakened state. She waits until something is especially painful, and she sticks her head up and starts in on you with all the hateful talk. Things you'd never say, even to a stranger, she screams at you. I know you didn't smile one genuine smile yesterday. I felt you cry at the Botanical Garden, and later in the bedroom. I know the losses. You saw all the babies, and healthy mommies that you never got to be or have. You saw all the carefree children and wished for your own innocence again. You were simply overwhelmed by her because for a time, the physical pain abated and you were forced to face the emotional difficulties of grief. You were able to walk some, pushing the wheelchair. It was a lovely day. The garden was beautiful, and yet, you could enjoy nothing. You could feel no gratitude. I think you could not even feel Christ with you. One time, you remembered your angel Monica, because a cardinal flitted off a branch in front of you, but she was screaming so much by then as to how worthless your life has been, that you forgot to let Moni help. Another time, you got to see a true life marriage proposal in front of you, that only the two of them and you witnessed, and you could not even smile. That's a magical gift that probably few have ever seen. A man get down on one knee and present a ring to a woman. Her hand flying to her mouth as she begins to cry. Her emphatic nod, and then the kiss and embrace between the two. And then a friend with a camera, who had been hiding in the bushes to get a picture of it, ran out to hug her as she shook and exclaimed, "Oh my God, oh my God!" And you sweetheart, you could not even feel happy for them. You saw the gift. You knew it was a gift but, you could not accept it. But, you do remember it. And today, you can smile a bit for receiving it. I know the screaming isn't over with the LIAR yet. I can still hear her, and I can feel the bruising she did to your spirit, and to me, your Sparkle. But, the feeling she brought forth in you has changed. You are not in danger of doing anything nonsensical to shut her up. You are able to feel some of your feelings again, and not just the dark ones. No, you're not laughing yet, but you are smiling small smiles. That is HUGE! You won! She didn't get you! I'm so proud you remembered that she is not to be trusted or believed. That she is a liar. A disease. She wants nothing more than to express herself, but you are tempted to do awful things to silence her verbal onslaught. Be grateful for this day, that you did not let her convince you to walk into the street. Be grateful that you were able to just know that you were being told lies, and the only way through was to just go through them. Be glad that you found a way to escape into TV so as to wait out the day, wait for a new day, hoping and knowing that she'd lose steam if you didn't buy in. And she has. And I know how much you hate that one of your teeth broke due to your disease yesterday, but I also know how grateful you are for the physical pain of that and the subsequent migraine, just to feel something, and not be an empty void, awaiting her screaming black lies. I know what a relief it was for you to feel the pain of those episodes, just so you could remember that you could feel something. And that you kicked in to self-care mode, taking care of yourself, and doing what needed doing to attend to your physical problems. And frankly, it may be a blessing that your tooth broke on a Friday. You will have to contend with a lot of physical pain over the weekend, and into next week, until you can be seen by the dentist. And that physical pain, that same discomfort is what rescued you yesterday from her lies. So, you can feel comfortable today, knowing that in the face of very necessary self-care, she cannot spew forth her vomit on you. She is silenced by your self-love. Your self-care. And this is all down to you. You did it! No one else! You survived her attack! That is no small thing, as many do not. She is very persistent and convincing. She is a manipulative bitch. She twists truths until they are unrecognizable. But, you saw. You remembered her temporary nature. You knew she needed belief in order to continue, and you didn't give her enough.
Today is a new day. I can feel that even though the dark blanket is still over me, it isn't cold or wet anymore. I can feel the dull ache of your tooth, and the migraine you woke up with. And I know, that although it is a gorgeous spring day, and you want to go out and walk the dogs, you will have to stay in the dark, and get through much, much pain, you will make it. For you recognize her for the Liar she is. And you stood up to the Bully. And that, sweet Marie, has made all the difference. You were rescued from her by your other illnesses. And you are given a reason to be actually grateful for them, because you didn't need to hurt yourself in order to escape her. You just needed to wait, and you knew that. You didn't believe. You remembered me, your Sparkle. And you know where to find me the next time.
I am so, so proud of you.
Love,
The Deepest, Purest part of YOU
I am so proud of you. You did it! Among all your illnesses, the worst one raised her head up yesterday and she really got to you. But, you, darling, you remembered that she's a LIAR. I was with you in the Arboretum, glorious as it was in all the blooms, on the edge of the lake. I saw everything beautiful that you saw. I felt the love there among all the families, children, old folks. And I could not let you enjoy it. I am your Sparkle. I am the purest part of you. When the LIAR starts spewing her nonsense, sometimes, if you can't chase her off right away, I know it feels like I have left forever. That's why I'm so proud. You remembered that I can never leave forever. I am who you are. I just have to retreat a bit when she throws a dark, wet, cold blanket over me. I am quieted to the point where you can't hear me. But you, my love, you could feel me and my presence, and that is why you are here today, and unhurt. I admit, I did retreat. She is terrifying, yelling all those horrible lies at you. Telling you things that are simply and clearly not true. And you get weakened because, there are threads of truth to her statements. But only threads. She wants you to buy in to her whole cloth, and it is easy to do in the face of her screaming. That's her manipulation of your weakened state. She waits until something is especially painful, and she sticks her head up and starts in on you with all the hateful talk. Things you'd never say, even to a stranger, she screams at you. I know you didn't smile one genuine smile yesterday. I felt you cry at the Botanical Garden, and later in the bedroom. I know the losses. You saw all the babies, and healthy mommies that you never got to be or have. You saw all the carefree children and wished for your own innocence again. You were simply overwhelmed by her because for a time, the physical pain abated and you were forced to face the emotional difficulties of grief. You were able to walk some, pushing the wheelchair. It was a lovely day. The garden was beautiful, and yet, you could enjoy nothing. You could feel no gratitude. I think you could not even feel Christ with you. One time, you remembered your angel Monica, because a cardinal flitted off a branch in front of you, but she was screaming so much by then as to how worthless your life has been, that you forgot to let Moni help. Another time, you got to see a true life marriage proposal in front of you, that only the two of them and you witnessed, and you could not even smile. That's a magical gift that probably few have ever seen. A man get down on one knee and present a ring to a woman. Her hand flying to her mouth as she begins to cry. Her emphatic nod, and then the kiss and embrace between the two. And then a friend with a camera, who had been hiding in the bushes to get a picture of it, ran out to hug her as she shook and exclaimed, "Oh my God, oh my God!" And you sweetheart, you could not even feel happy for them. You saw the gift. You knew it was a gift but, you could not accept it. But, you do remember it. And today, you can smile a bit for receiving it. I know the screaming isn't over with the LIAR yet. I can still hear her, and I can feel the bruising she did to your spirit, and to me, your Sparkle. But, the feeling she brought forth in you has changed. You are not in danger of doing anything nonsensical to shut her up. You are able to feel some of your feelings again, and not just the dark ones. No, you're not laughing yet, but you are smiling small smiles. That is HUGE! You won! She didn't get you! I'm so proud you remembered that she is not to be trusted or believed. That she is a liar. A disease. She wants nothing more than to express herself, but you are tempted to do awful things to silence her verbal onslaught. Be grateful for this day, that you did not let her convince you to walk into the street. Be grateful that you were able to just know that you were being told lies, and the only way through was to just go through them. Be glad that you found a way to escape into TV so as to wait out the day, wait for a new day, hoping and knowing that she'd lose steam if you didn't buy in. And she has. And I know how much you hate that one of your teeth broke due to your disease yesterday, but I also know how grateful you are for the physical pain of that and the subsequent migraine, just to feel something, and not be an empty void, awaiting her screaming black lies. I know what a relief it was for you to feel the pain of those episodes, just so you could remember that you could feel something. And that you kicked in to self-care mode, taking care of yourself, and doing what needed doing to attend to your physical problems. And frankly, it may be a blessing that your tooth broke on a Friday. You will have to contend with a lot of physical pain over the weekend, and into next week, until you can be seen by the dentist. And that physical pain, that same discomfort is what rescued you yesterday from her lies. So, you can feel comfortable today, knowing that in the face of very necessary self-care, she cannot spew forth her vomit on you. She is silenced by your self-love. Your self-care. And this is all down to you. You did it! No one else! You survived her attack! That is no small thing, as many do not. She is very persistent and convincing. She is a manipulative bitch. She twists truths until they are unrecognizable. But, you saw. You remembered her temporary nature. You knew she needed belief in order to continue, and you didn't give her enough.
Today is a new day. I can feel that even though the dark blanket is still over me, it isn't cold or wet anymore. I can feel the dull ache of your tooth, and the migraine you woke up with. And I know, that although it is a gorgeous spring day, and you want to go out and walk the dogs, you will have to stay in the dark, and get through much, much pain, you will make it. For you recognize her for the Liar she is. And you stood up to the Bully. And that, sweet Marie, has made all the difference. You were rescued from her by your other illnesses. And you are given a reason to be actually grateful for them, because you didn't need to hurt yourself in order to escape her. You just needed to wait, and you knew that. You didn't believe. You remembered me, your Sparkle. And you know where to find me the next time.
I am so, so proud of you.
Love,
The Deepest, Purest part of YOU
Thursday, May 4, 2017
Salt, salt, salt, salt
Maybe I should change the name of my blog to Salt, Faith, Family, Friends, etc. lol Honestly, if anyone would've ever told me how much difference the correct amount of salt inside me would make, I'd never have believed it. But, yesterday, my doc appointment proved it. My POTS symptoms are all but gone. Yes, I still have other stuff from other syndromes that make my life very challenged, but we have successfully treated those issues which were treatable where POTS is concerned. There has been one medicine involved. I have another metabolic stress test scheduled for late June. Depending on its results, I may even come off of it!! I may be able to just manage these symptoms with my high protein, very high salt, and daily light exercise regimen. Can't tell y'all how nice it is to stand up and not black out. lol. Yay for blood flow!!! Huge kudos to my nutritionist, Dr. Ron Overburg. He has been just an email away for months with me, and has helped every time I have reached out. A blessing. Yesterday, my BP was 130/80. In January, the average was about 72/58. No wonder I feel so much better, and I can now think clearly a lot more often.
The moral of the story: Don't give up. Answers are out there for some of the questions. And some of those answers are simple, without any side effects. Use your energy as wisely as you can but, don't quit trying to improve your life.
Gratitude for my access to health care. For our ability to afford it, and my courage to face the facts.
Have happy, happy, days!
M
The moral of the story: Don't give up. Answers are out there for some of the questions. And some of those answers are simple, without any side effects. Use your energy as wisely as you can but, don't quit trying to improve your life.
Gratitude for my access to health care. For our ability to afford it, and my courage to face the facts.
Have happy, happy, days!
M
Wednesday, April 19, 2017
Assistance Comes From Everywhere. Look For It.
I have been in many situations, many different times which put me almost entirely out of any control of my life's immediate situation. Yesterday's advocate, a medical doctor I had never met before, of all people, was hysterical, loving, curious, entirely attentive, and the outcome of the day was positive.
I was receiving Scenar Therapy for pain and chronic illness with a therapist and she wanted the doctor of the clinic where she practices to see and examine me before I left the appointment. That was supposed to have been scheduled into the appointment yesterday, but the appointments desk didn't get it done. I was very nearly asleep on the table, the treatment was that relaxing. She pretty much had to come in and wake me and I had to drag myself back to alertness when it was over. At that time, it was 12:15 and our appointment had run a little long. It began at 11am and was supposed to last an hour, so, I arranged for the bus to come at 12:30-12:50 to fetch me. So, at 12:15, the nurse came in and took my BP, temp, etc, and I informed her, as I had done the therapist, that I had only 15 minutes left before I'd turn into a pumpkin. So, the nurse said, ok, lets get the doctor in now, then. And so enters Dr. B. He is an oncologist/hematologist. I am not entirely sure why he needed/wanted to see me, but he also knew about the time limit. He was warm from the beginning. He is absolutely not concerned about protocol, and from my viewpoint, sort of likes to yell out for things to be brought to him or done for him. Sure enough at 12:30, we were talking about the details of cancer in my family members and I got a phone call from DART saying my bus was outside waiting for me. I told her I was still in with the doctor and I asked him how much longer, he said 10 minutes, so I told her 10 minutes. Now, I know when that call is made, that begins a 10 minute wait. They won't wait longer than that if they have a tight schedule, or if there is anybody else in the bus who needs to be taken to a destination. So, we continued talking and he continued questioning me and I answered. And because the therapy worked so spectacularly for me, I was clear headed, in a good mood, and not in any real pain. I was only hungry, thirsty and needed badly to use the bathroom. In about 12 minutes time, I got a second call. The driver is outside waiting for me. I was clearly going to get left. My option to get home would have been an Uber ride at about $28-$30. He held out his hand in the exam room and said "Gimme". So, I just smiled and handed him my phone.
Dr. B has a booming voice, even in just conversational tones, he can be heard. I'm not sure he is even able to whisper. If he could, it would surprise me. He said to the dispatcher, "TEN minutes, that's all we need. Just 10 minutes. Come on, you can give this lady 10 minutes. With everything she has been through and everything she has to go through, most especially dealing with ME, she deserves more than 10 minutes. " I didn't hear her response but he was satisfied with it. That concluded the conversation. He handed my phone back to me as I howled with laughter. We finished up. He left me to dress (left the exam room with the door wide open, btw), and I then joined him and the nurses in the hall. They were filling out lab requisitions for 2 tests that I hadn't been told I needed. Nurse got me to sign requisitions, and I said "Does my insurance cover these?" "YES," he boomed. "If you get a bill, you bring it to ME!" And the ginormous grin returned to my face. I was given a cup and went to the restroom and brought them their share of my urine. Didn't take the time to pay, will do that next week when I go. I need to go there weekly for a while, maybe a month and a half or so. Upon leaving, I sped out and went to the main parking area on the side of the building. No bus. I was headed back into their offices to pay up and ask them to just do the labs now, before I call for my Uber. Then I saw a side entrance. Sure enough, I rolled out and there was my bus. Parked under the shade. Driver was reading. Cab was empty. Both things on my side. No other patrons and a loose schedule. I loaded in and happily gobbled my lunch on our way home. And the driver, he was the driver from the day last year that I had a panic attack on the bus. I hadn't ridden with him since then.
It was such a good day. Everything went my way. And listen to this, on the way to the appointment, my bus was in an accident! He hit the van in front of us. The light turned green, and she started to move but then stopped, and he had already sort of floored our bus. I was strapped down in the front passenger area. There were 2 other ladies in the back. No one was injured but, we were all shaken up pretty well. And in spite of being uninjured, my body dumped so much adrenaline into my system, that I was unable to communicate AT ALL when I got to that office. I mean I could barely speak. I couldn't think of any words. And, because of the therapy, the doctor, the laughter, and the bus schedule, I came home and didn't need a nap, didn't need a cane, and went mattress shopping that afternoon. Blessings just popped up everywhere. They always do for me, really, because I look for and identify them. But, yesterday, there were so many opportunities for things to go really, really wrong. And they didn't. My angels sprinkled their dust. It was lovely. Good days are a reality. If you are mired in bad ones, take this as proof that good ones will come. They will.
Have happy, happy days!
I was receiving Scenar Therapy for pain and chronic illness with a therapist and she wanted the doctor of the clinic where she practices to see and examine me before I left the appointment. That was supposed to have been scheduled into the appointment yesterday, but the appointments desk didn't get it done. I was very nearly asleep on the table, the treatment was that relaxing. She pretty much had to come in and wake me and I had to drag myself back to alertness when it was over. At that time, it was 12:15 and our appointment had run a little long. It began at 11am and was supposed to last an hour, so, I arranged for the bus to come at 12:30-12:50 to fetch me. So, at 12:15, the nurse came in and took my BP, temp, etc, and I informed her, as I had done the therapist, that I had only 15 minutes left before I'd turn into a pumpkin. So, the nurse said, ok, lets get the doctor in now, then. And so enters Dr. B. He is an oncologist/hematologist. I am not entirely sure why he needed/wanted to see me, but he also knew about the time limit. He was warm from the beginning. He is absolutely not concerned about protocol, and from my viewpoint, sort of likes to yell out for things to be brought to him or done for him. Sure enough at 12:30, we were talking about the details of cancer in my family members and I got a phone call from DART saying my bus was outside waiting for me. I told her I was still in with the doctor and I asked him how much longer, he said 10 minutes, so I told her 10 minutes. Now, I know when that call is made, that begins a 10 minute wait. They won't wait longer than that if they have a tight schedule, or if there is anybody else in the bus who needs to be taken to a destination. So, we continued talking and he continued questioning me and I answered. And because the therapy worked so spectacularly for me, I was clear headed, in a good mood, and not in any real pain. I was only hungry, thirsty and needed badly to use the bathroom. In about 12 minutes time, I got a second call. The driver is outside waiting for me. I was clearly going to get left. My option to get home would have been an Uber ride at about $28-$30. He held out his hand in the exam room and said "Gimme". So, I just smiled and handed him my phone.
Dr. B has a booming voice, even in just conversational tones, he can be heard. I'm not sure he is even able to whisper. If he could, it would surprise me. He said to the dispatcher, "TEN minutes, that's all we need. Just 10 minutes. Come on, you can give this lady 10 minutes. With everything she has been through and everything she has to go through, most especially dealing with ME, she deserves more than 10 minutes. " I didn't hear her response but he was satisfied with it. That concluded the conversation. He handed my phone back to me as I howled with laughter. We finished up. He left me to dress (left the exam room with the door wide open, btw), and I then joined him and the nurses in the hall. They were filling out lab requisitions for 2 tests that I hadn't been told I needed. Nurse got me to sign requisitions, and I said "Does my insurance cover these?" "YES," he boomed. "If you get a bill, you bring it to ME!" And the ginormous grin returned to my face. I was given a cup and went to the restroom and brought them their share of my urine. Didn't take the time to pay, will do that next week when I go. I need to go there weekly for a while, maybe a month and a half or so. Upon leaving, I sped out and went to the main parking area on the side of the building. No bus. I was headed back into their offices to pay up and ask them to just do the labs now, before I call for my Uber. Then I saw a side entrance. Sure enough, I rolled out and there was my bus. Parked under the shade. Driver was reading. Cab was empty. Both things on my side. No other patrons and a loose schedule. I loaded in and happily gobbled my lunch on our way home. And the driver, he was the driver from the day last year that I had a panic attack on the bus. I hadn't ridden with him since then.
It was such a good day. Everything went my way. And listen to this, on the way to the appointment, my bus was in an accident! He hit the van in front of us. The light turned green, and she started to move but then stopped, and he had already sort of floored our bus. I was strapped down in the front passenger area. There were 2 other ladies in the back. No one was injured but, we were all shaken up pretty well. And in spite of being uninjured, my body dumped so much adrenaline into my system, that I was unable to communicate AT ALL when I got to that office. I mean I could barely speak. I couldn't think of any words. And, because of the therapy, the doctor, the laughter, and the bus schedule, I came home and didn't need a nap, didn't need a cane, and went mattress shopping that afternoon. Blessings just popped up everywhere. They always do for me, really, because I look for and identify them. But, yesterday, there were so many opportunities for things to go really, really wrong. And they didn't. My angels sprinkled their dust. It was lovely. Good days are a reality. If you are mired in bad ones, take this as proof that good ones will come. They will.
Have happy, happy days!
Friday, March 31, 2017
Bit of Structure and Guidance
Sometimes, the best thing for me is just a bit of structure. I went to an exercise specialist the other day who works under my cardiac electrophysiologist. I came away from that appointment with renewed hope. I wish I could say vigor, but as it was my 4th appointment this week in as many days, I was far from vigorous. After a nap though, I started right in on my assigned exercises. He broke down his specific recommendations for me. Cardio some days, strength some days. Each day, something assigned. Instructions that if I do not fulfill the exercise on any day, to just rest and excuse myself, no harm done. None of the previous work unravels, I just have a rest day. No guilt. He stressed this. No guilt. And today, I accomplished Day 2 of the plan. I see him again in 3 months. He explained that even with my limitations, I am in good shape. Several joints have pretty limited range of motion, and I have instructions as to how to begin helping them. These steps are teensy, baby steps, but, maybe in 6 months, it won't be such a struggle to lift a gallon of milk. The hope is realistic.
Also, a bit of guidance. Two books I've read and am still reading are Feeling Good by David Burns and In Sickness As In Health by Barbara Kivowitz are both pretty good. Feeling Good is an easy to read, understand, and easy to follow steps to self-help book. I'm in the middle of it as I had to get my book club book read for Sunday morning with my breakfast ladies. So, now I can go back to it. I did make time to read In Sickness As In Health though. When chronic illness strikes, it messes up everything, including your relationships, especially your marriage. There are paths through the quagmire, but they are hard to follow without guidance. It gives examples of how different couples adopt new roles and try to manage their grief about the loss. It explains how the illness is not just about me, the ill person, but my spouse's world is shattered by it too. He loses everything he hoped would be true for our future, just as I have. Honestly, and incredibly, I've never given that much thought. I have always thought it was just happening in me. I am the one in pain, in a wheelchair. But, if I sit and think about the reversal of the situation, of course I would feel loss if he were living like I am.
I have always been a lover of some instruction, some guidance, tips, structure, list-enjoying kind of gal. This life, this unpredictable body, unreliable mind, unrelenting symptoms, leaves me feeling floundering around in the world. These little bits of HERE. DO THIS. have helped so much.
Thankful that I was able to have the meeting with Kyle and that the relationship book I chose to read was a good and helpful one. And that I had the ability to read through and understand it in a reasonable time frame.
Have happy days!
Marie
Also, a bit of guidance. Two books I've read and am still reading are Feeling Good by David Burns and In Sickness As In Health by Barbara Kivowitz are both pretty good. Feeling Good is an easy to read, understand, and easy to follow steps to self-help book. I'm in the middle of it as I had to get my book club book read for Sunday morning with my breakfast ladies. So, now I can go back to it. I did make time to read In Sickness As In Health though. When chronic illness strikes, it messes up everything, including your relationships, especially your marriage. There are paths through the quagmire, but they are hard to follow without guidance. It gives examples of how different couples adopt new roles and try to manage their grief about the loss. It explains how the illness is not just about me, the ill person, but my spouse's world is shattered by it too. He loses everything he hoped would be true for our future, just as I have. Honestly, and incredibly, I've never given that much thought. I have always thought it was just happening in me. I am the one in pain, in a wheelchair. But, if I sit and think about the reversal of the situation, of course I would feel loss if he were living like I am.
I have always been a lover of some instruction, some guidance, tips, structure, list-enjoying kind of gal. This life, this unpredictable body, unreliable mind, unrelenting symptoms, leaves me feeling floundering around in the world. These little bits of HERE. DO THIS. have helped so much.
Thankful that I was able to have the meeting with Kyle and that the relationship book I chose to read was a good and helpful one. And that I had the ability to read through and understand it in a reasonable time frame.
Have happy days!
Marie
Friday, February 24, 2017
No Worries, I'm Over Myself
Good news!!! Now, when telling funny stories with your friends, not mean-spirited ones, mind you, but genuinely, we're all laughing at each other together stories, you've got a new one. You are the person who knows a woman who fell out of her wheelchair and it collapsed and landed partially on top of her body while her two dogs sat there very politely and obediently. Honestly I do think it is a good thing they were tied to the chair. Oscar, bless him, the gentleman he is, would have stayed to protect me, my honor, our pride, etc. Katie on the other hand would have split, wanting not to be seen near such pitiful wreckage. Seriously, she would've.
I have discovered that walking the dogs with my Rolly walker is a good technique. Been doing that more and more. Since there is a seat, I am covered if the "muscle collapsing" occurs. And I'll just sit until it comes back or I can be rescued, whichever is more tolerable. I am leery of Texas Iditarod adventures right now, as I'm sure you can understand.
I managed to scrub both tubs, both toilets, all bathroom counters and sinks, the kitchen counter, and get both beds linens changed, and caught up with laundry this week. Now that, my dear friends, is an accomplishment. The house still looks very dirty because, well it is. Dust everywhere. Floors need sweeping, then mopping. New cat thinks its ok to just shed his fur wherever he pleases. We've had the talk, trust me. He does not care. But, neither of us humans has to bathe in dirty vessels anymore, so that's something. And we get to sleep in clean stuff. Nice when you sleep sans pjs, like we do.
Um, what else. OK, I went to 3 doctor appointments this week. And at every office, people, more than one, commented on my wheelchair "rims". How much they loved them, did I make them, how did I do it, did I think of it by myself, do I make them for other people? If I'd had had some in my giant diaper bag, I swear I could've sold 5 or 6 pair. Depending of what I charge, of course. So, I have decided to now switch up off of crocheting Twiddle Muffs for a while and do Yarn Rims. Crocheting in the round is not mindless, like I like my crocheting to be, though. It requires counting, marking, yadda, yadda. But, I have stumbled upon a way to do it with a loom, which I think will make it easier and faster on me to create such yarn rims. Now, this includes learning a new skill and all that comes with it. I don't even have a knitting loom, never even held one that I can remember. But, I'm gonna give it a go. Here is the surprising bit, and another way I'm blessed to be with the very specific man I married. To make a custom size circle, THERE IS A LOT OF MATH INVOLVED. I'm talking a lot. Like 10th grade geometry finals, lot. And, no surprise to me, I cannot do it. But, when my sweetness gets home, since he's been telling me to do Yarn Rims for years now, he will conquer that damn math for me. It's really ridiculous. There's conversions from rows to inches to stitches. Pi is used somewhere in there along with radius. There's like 4 different times you have to divide by what seems like a random number. I refuse to try to wrap my head around it anymore. The brain box that my geometry lives in has been sealed shut and stuffed in the back of my brain closet for more than 3 decades. That stuff is just not coming out. I say RIP geometry. I married a smart man. lol So, here's to learning new things, spitting in the face of the all intimidating knitting loom, and marrying the RIGHT man. (I still have 23 more minutes before I am allowed to drink anything, but I swear I will lift a glass then.)
The changes to the way I eat are turning out to be really good for me and my digestion and absorption of food. The salt tablets, and what I am adding to all my beverages and food have helped raise my blood pressure to a more normal range. I go back to Dr. S next week to hear what was seen while looking at my kidneys and at the Nutcracker syndrome thingy.
I have the opportunity to chat with new friends most any time of the day now. One of them has created a chat room for a group of us who met at our support group. It is so beneficial to not be isolated here anymore. I guess that's the understatement of the year. Isolation is never good, not for anyone. Especially if you're in pain. Because pain is scary, even when you know that some or all of the fear is unjustified. And it SUCKS to be isolated and scared. That is a rabbit hole no one should ever go down. So, thank you to my group.
Today's confession is that I did try to put the harness on the cat so we could go walking with the leash. Its a special cat harness, it's not just jimmied from the dog's or anything. Precious Evy would let me put it on her, but then promptly became a doorstop. Norway acted like he was sure I lost my mind and if I touched him any longer, it would be a contagious thing. So, still no walking kitties on leashes with the dogs at my house. A girl can dream.
I'm thankful today. For so much, and for so many. For comfort, provision, opportunity, services. For family, friends, and strangers, whether they give kindness or just teach lessons. Thankful for the fact that I am able to keep my mind and heart open to whatever, and whoever comes.
I have discovered that walking the dogs with my Rolly walker is a good technique. Been doing that more and more. Since there is a seat, I am covered if the "muscle collapsing" occurs. And I'll just sit until it comes back or I can be rescued, whichever is more tolerable. I am leery of Texas Iditarod adventures right now, as I'm sure you can understand.
I managed to scrub both tubs, both toilets, all bathroom counters and sinks, the kitchen counter, and get both beds linens changed, and caught up with laundry this week. Now that, my dear friends, is an accomplishment. The house still looks very dirty because, well it is. Dust everywhere. Floors need sweeping, then mopping. New cat thinks its ok to just shed his fur wherever he pleases. We've had the talk, trust me. He does not care. But, neither of us humans has to bathe in dirty vessels anymore, so that's something. And we get to sleep in clean stuff. Nice when you sleep sans pjs, like we do.
Um, what else. OK, I went to 3 doctor appointments this week. And at every office, people, more than one, commented on my wheelchair "rims". How much they loved them, did I make them, how did I do it, did I think of it by myself, do I make them for other people? If I'd had had some in my giant diaper bag, I swear I could've sold 5 or 6 pair. Depending of what I charge, of course. So, I have decided to now switch up off of crocheting Twiddle Muffs for a while and do Yarn Rims. Crocheting in the round is not mindless, like I like my crocheting to be, though. It requires counting, marking, yadda, yadda. But, I have stumbled upon a way to do it with a loom, which I think will make it easier and faster on me to create such yarn rims. Now, this includes learning a new skill and all that comes with it. I don't even have a knitting loom, never even held one that I can remember. But, I'm gonna give it a go. Here is the surprising bit, and another way I'm blessed to be with the very specific man I married. To make a custom size circle, THERE IS A LOT OF MATH INVOLVED. I'm talking a lot. Like 10th grade geometry finals, lot. And, no surprise to me, I cannot do it. But, when my sweetness gets home, since he's been telling me to do Yarn Rims for years now, he will conquer that damn math for me. It's really ridiculous. There's conversions from rows to inches to stitches. Pi is used somewhere in there along with radius. There's like 4 different times you have to divide by what seems like a random number. I refuse to try to wrap my head around it anymore. The brain box that my geometry lives in has been sealed shut and stuffed in the back of my brain closet for more than 3 decades. That stuff is just not coming out. I say RIP geometry. I married a smart man. lol So, here's to learning new things, spitting in the face of the all intimidating knitting loom, and marrying the RIGHT man. (I still have 23 more minutes before I am allowed to drink anything, but I swear I will lift a glass then.)
The changes to the way I eat are turning out to be really good for me and my digestion and absorption of food. The salt tablets, and what I am adding to all my beverages and food have helped raise my blood pressure to a more normal range. I go back to Dr. S next week to hear what was seen while looking at my kidneys and at the Nutcracker syndrome thingy.
I have the opportunity to chat with new friends most any time of the day now. One of them has created a chat room for a group of us who met at our support group. It is so beneficial to not be isolated here anymore. I guess that's the understatement of the year. Isolation is never good, not for anyone. Especially if you're in pain. Because pain is scary, even when you know that some or all of the fear is unjustified. And it SUCKS to be isolated and scared. That is a rabbit hole no one should ever go down. So, thank you to my group.
Today's confession is that I did try to put the harness on the cat so we could go walking with the leash. Its a special cat harness, it's not just jimmied from the dog's or anything. Precious Evy would let me put it on her, but then promptly became a doorstop. Norway acted like he was sure I lost my mind and if I touched him any longer, it would be a contagious thing. So, still no walking kitties on leashes with the dogs at my house. A girl can dream.
I'm thankful today. For so much, and for so many. For comfort, provision, opportunity, services. For family, friends, and strangers, whether they give kindness or just teach lessons. Thankful for the fact that I am able to keep my mind and heart open to whatever, and whoever comes.
Wednesday, February 15, 2017
Short post, changed suddenly
Today, I think, is going to be short because I promised these two poor mongrels that we'd go for a walk. I'm out of excuses. It's beautiful. I'll harness them up and attach them to my wheelchair and we'll go for a Texas Iditarod.
Anyway, I am doing decent, I think. I can feel a difference from the few different therapies I have begun in the last month. My POTS symptoms are down a lot. The dizziness upon changing positions is drastically diminished. My balance is improved. I still get very weak and lose muscle tone very suddenly, so the assistive devices continue to be in play. My mood is great. I have a supportive and nurturing group of friends who are all walking similar paths to mine. This is the first time I have had that since I've been sick. A group to belong to. I could always feel the void before, only now, there are lovely folks in its place. A gift from Heaven.
Gotta stop. Iditarod needed now. Small dog is about to drive large dog off an edge. Back later.
OK, Back from adventure. Bad news. I haven't done it before, but you can fall out of a wheelchair. I am not injured but a lot of raw emotion is coursing through me that needs to be processed. So, I'm not going to write anymore right now. Need to cry and nurture myself. Worse news, a car is willing to drive by a woman who is on the ground in a heap next to a collapsed wheelchair with 2 dogs tied and sitting there by her. Who does that?
Thankful that I am not physically injured.
Anyway, I am doing decent, I think. I can feel a difference from the few different therapies I have begun in the last month. My POTS symptoms are down a lot. The dizziness upon changing positions is drastically diminished. My balance is improved. I still get very weak and lose muscle tone very suddenly, so the assistive devices continue to be in play. My mood is great. I have a supportive and nurturing group of friends who are all walking similar paths to mine. This is the first time I have had that since I've been sick. A group to belong to. I could always feel the void before, only now, there are lovely folks in its place. A gift from Heaven.
Gotta stop. Iditarod needed now. Small dog is about to drive large dog off an edge. Back later.
OK, Back from adventure. Bad news. I haven't done it before, but you can fall out of a wheelchair. I am not injured but a lot of raw emotion is coursing through me that needs to be processed. So, I'm not going to write anymore right now. Need to cry and nurture myself. Worse news, a car is willing to drive by a woman who is on the ground in a heap next to a collapsed wheelchair with 2 dogs tied and sitting there by her. Who does that?
Thankful that I am not physically injured.
Subscribe to:
Posts (Atom)