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!
Wednesday, April 19, 2017
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.
Wednesday, February 1, 2017
Maybe a New Blog Title and Norway
During the past month, I have learned about some new diagnoses that I have which were not caught until now. I think I will just leave my current blog title for now, even though it frankly is just the tip of my iceberg of problems. I had thought that all this time, I was living with and coping with fibromyalgia, migraines, depression, and all the challenges that come with them. Wrong. After some research in October, I began asking questions and seeking medical advice. The doc who diagnosed my fibro called it fibromyalgia with hypermobility syndrome. That means Ehlers-Danlos syndrome. So, fibromyalgia is thought not to cause us any actual harm, just the difficulty of coping with life in pain. But, Ehlers-Danlos syndrome (EDS) is a connective tissue disease. Think of a rubber band. Now think of finding one in an old junk drawer. It isn't snapped, but it doesn't have any elasticity left. It's fully stretched out and can't go back into its original shape. Chemically, it isn't possible. Properties have broken down over time and use that have ruined it. Now, imagine all the connective tissue in your body. Tissue that connects muscles to bones, ligaments to bones, cartilage to ligaments, membranes that surround and suspend organs, blood vessels, skin. There's technically more, but you get the idea. It's literally in us everywhere. Well, mine doesn't have enough collagen. It is too lax to keep things in their proper place. Even my blood vessels are too loosey goosey. This is a genetic condition. It has been present in me always. I can remember as a child being called "double-jointed" when there really is no such thing. It means that every time I bent a joint as a stupid human trick, I was hurting myself. There isn't any cure. There really aren't even many treatments, except to wear braces around joints, to help stabilize them. It isn't going to go away. It is in my genes. I will always have it. There is expensive genetic testing if I wanted to go that route, but it is only about 50% effective in telling what the genes are saying. There is still so much unknown with genes. There are about 52 kinds of EDS, some being super mild, some being very, very dangerous. The dangerous ones are rare. I have decided not to have the testing. I am ok with living with it without "knowing" the specific label.
Further, I am newly diagnosed as having POTS (Postural Orthostatic Tachycardic Syndrome). This is the illness that disables me the most. I have low blood pressure, low blood volume, and my heart doesn't pump blood to my head very quickly or efficiently. If I eat too much at a meal, most all the blood in my body gets pulled into my digestive tract to deal with that. Leaving very little for say, thinking or moving around. If I do too much activity at once, rest is required. Not just desired, but required. It is the reason I cannot drive. Not all POTS patients are affected as severely as I am, but about 25% are. It was diagnosed by a cardiac electrophysiologist. The better news with this condition is that there are a few therapy regimens that can improve quality of life a bit. Already, my balance is a bit better, and I am less dizzy upon standing than a month ago. It also explains that when I had a panic attack, I think back in September, it wasn't fear on my part, it was POTS. It is a dysfunction of my autonomic nervous system.
I've also got MALS.
Median arcuate ligament syndrome (MALS) is also called celiac artery compression syndrome. The median arcuate ligament (MAL) is shaped like an arch that goes around the aorta to connect the diaphragm to the spine. If the MAL presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver and other organs) and the nerves in the area (celiac plexus), it is known as MALS. The ligament essentially acts like a hammer and the celiac axis acts like an anvil, compressing the nerves in between. This causes abdominal pain that is worsened by eating.
I don't have much abdominal pain, nor is mine worse upon eating. There is a surgery to release the ligament but, it is risky, and frankly hasn't been suggested yet to me. I intend to avoid that.
I've also got gastropariesis. When you break down the word, it literally means "stomach paralysis". Meaning no motility of what I eat. Stuff just sits. Leading to of course the lifelong constipation which has always been my companion, since I was a baby. This is a structure problem. Again genetic.
I have, of course, the migraines and fibromyalgia, but they are secondary and tertiary to the stuff which has now been identified. The migraines are a result of my blood vessels being neither strong enough, nor having enough blood to get my brain covered like it needs to be. The fibromyalgia is thought not to be genetic, but most everyone with EDS has it.
I have met a whole new world of people who have these issues and live with them, and fight every day just to do normal things like have breakfast. Many are still able to work. Many are children who struggle to go to school. Many times I will log on and someone of the group will have been hospitalized. There are several other conditions associated with EDS which I don't have, which I'm so grateful for.
There is a lot more unknown in front of me than ever before. I am in the hands of a great doctor now, who immediately identified what was going on and has begun a plan of treatment. I also have found a new primary who knows about these illnesses so that when I go to her for say, a viral infection, she understands everything I face. I also have a new therapist who I like.
Still, I rely on my faith. I turn to my Savior many, many times a day, every day. In thanksgiving, in pleas for the suffering of others, and in praise for what He allows. I am grateful for my faith more than anything or anyone in the world. Without it, I am certain I would not have what is necessary to face these obstacles.
I am making more of an effort recently to bring people into my world to grow my support system. I am forcing myself to go out, shutting down fear of "how will I be?'. I am benefiting from it so much. It is exhausting for me but so worthwhile.
It is necessary now for me to get and wear a medical ID bracelet or necklace, listing what I've got going on. Even though I've never fainted yet, with POTS, that is on the table, and with EDS, I need to be treated very gently. I have a wallet card. I wonder what it will feel like to wear those labels on my body. If I am ever in an accident while I am alone, which is most of the time, those responding need to know what is up with me. My cognitive deficiencies happen too often and too deeply for me to think that I can help myself. I know better.
So, I think most people don't share all their medical conditions with "everyone" but, I want to talk about them. For me, bringing awareness of life with them makes life with them livable. Otherwise, they stay invisible, like mental illness, yet you are so, so sick inside. It's important for the world to talk about depression. It's important for the world to talk about suicide. It's important for people to be aware of what others deal with. So they can help. So they can pray. So they can hug their kids more. So they can choose hope over fear. So we can all be grateful for this one day that we got to wake up again.
Have happy, happy days,
M
Meet our big handsome Norway
Further, I am newly diagnosed as having POTS (Postural Orthostatic Tachycardic Syndrome). This is the illness that disables me the most. I have low blood pressure, low blood volume, and my heart doesn't pump blood to my head very quickly or efficiently. If I eat too much at a meal, most all the blood in my body gets pulled into my digestive tract to deal with that. Leaving very little for say, thinking or moving around. If I do too much activity at once, rest is required. Not just desired, but required. It is the reason I cannot drive. Not all POTS patients are affected as severely as I am, but about 25% are. It was diagnosed by a cardiac electrophysiologist. The better news with this condition is that there are a few therapy regimens that can improve quality of life a bit. Already, my balance is a bit better, and I am less dizzy upon standing than a month ago. It also explains that when I had a panic attack, I think back in September, it wasn't fear on my part, it was POTS. It is a dysfunction of my autonomic nervous system.
I've also got MALS.
Median arcuate ligament syndrome (MALS) is also called celiac artery compression syndrome. The median arcuate ligament (MAL) is shaped like an arch that goes around the aorta to connect the diaphragm to the spine. If the MAL presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver and other organs) and the nerves in the area (celiac plexus), it is known as MALS. The ligament essentially acts like a hammer and the celiac axis acts like an anvil, compressing the nerves in between. This causes abdominal pain that is worsened by eating.
I don't have much abdominal pain, nor is mine worse upon eating. There is a surgery to release the ligament but, it is risky, and frankly hasn't been suggested yet to me. I intend to avoid that.
I've also got gastropariesis. When you break down the word, it literally means "stomach paralysis". Meaning no motility of what I eat. Stuff just sits. Leading to of course the lifelong constipation which has always been my companion, since I was a baby. This is a structure problem. Again genetic.
I have, of course, the migraines and fibromyalgia, but they are secondary and tertiary to the stuff which has now been identified. The migraines are a result of my blood vessels being neither strong enough, nor having enough blood to get my brain covered like it needs to be. The fibromyalgia is thought not to be genetic, but most everyone with EDS has it.
I have met a whole new world of people who have these issues and live with them, and fight every day just to do normal things like have breakfast. Many are still able to work. Many are children who struggle to go to school. Many times I will log on and someone of the group will have been hospitalized. There are several other conditions associated with EDS which I don't have, which I'm so grateful for.
There is a lot more unknown in front of me than ever before. I am in the hands of a great doctor now, who immediately identified what was going on and has begun a plan of treatment. I also have found a new primary who knows about these illnesses so that when I go to her for say, a viral infection, she understands everything I face. I also have a new therapist who I like.
Still, I rely on my faith. I turn to my Savior many, many times a day, every day. In thanksgiving, in pleas for the suffering of others, and in praise for what He allows. I am grateful for my faith more than anything or anyone in the world. Without it, I am certain I would not have what is necessary to face these obstacles.
I am making more of an effort recently to bring people into my world to grow my support system. I am forcing myself to go out, shutting down fear of "how will I be?'. I am benefiting from it so much. It is exhausting for me but so worthwhile.
It is necessary now for me to get and wear a medical ID bracelet or necklace, listing what I've got going on. Even though I've never fainted yet, with POTS, that is on the table, and with EDS, I need to be treated very gently. I have a wallet card. I wonder what it will feel like to wear those labels on my body. If I am ever in an accident while I am alone, which is most of the time, those responding need to know what is up with me. My cognitive deficiencies happen too often and too deeply for me to think that I can help myself. I know better.
So, I think most people don't share all their medical conditions with "everyone" but, I want to talk about them. For me, bringing awareness of life with them makes life with them livable. Otherwise, they stay invisible, like mental illness, yet you are so, so sick inside. It's important for the world to talk about depression. It's important for the world to talk about suicide. It's important for people to be aware of what others deal with. So they can help. So they can pray. So they can hug their kids more. So they can choose hope over fear. So we can all be grateful for this one day that we got to wake up again.
Have happy, happy days,
M
Meet our big handsome Norway
Sunday, January 22, 2017
Inspired by others
So, so grateful to the DFW Fibro Support Group and its Leadership Team and that I was able to attend yesterday's meeting. Inspired now to write just a bit.
Firstly, I would like to encourage any of you pain warriors to follow a couple tips that I wish I'd have taken in the early years.
1. Let go of what you think society expects of you.
2. Let go of what you think your life should look like.
3. Develop the skill to sit with your own company. Just you. No phone, no bike, no motorcar, not a single luxury, like Robinson Caruso, as primitive as can be. Ok. Sorry, for the Gilligan digression. Seriously, you need to get to know yourself better than you do. Trust me.
Society, our culture, and especially all the in-your-face media we are exposed to constantly show us others. What everybody else is doing, thinking, wearing, saying. We are shown how to be entertained, how to entertain. We are given bits of news that are mountains made from molehills because of some political spin or somesuch. And we interpret these wearers, doers, sayers, entertainers, and entertained as how WE should be. How I should live. What is expected of me by others. Here is the truth. This expectation of wearing, doing, blah, blah, blah, blah is a falsehood. You can choose to buy into it or not. Even if you have in the past, now your illness gets in the way and you are sad you can no longer curl/straighten your hair like you used to, etc. Let go. Just let go of it. I GUARANTEE you will feel better. It is too heavy and your physical, mental, and emotional ability to lift such inferred expectations is now limited. You are not required to be like others. In fact, you're going to be happier when you stop comparing your life with theirs. Believe it.
Next, none of us thought we'd get sick. We all, well most of us, had plans, dreams, goals. I used to be just very neat. In my ideal life, there isn't anything out of place, not in my purse, on my nightstand, in my kitchen, no where. I like my surroundings clean and tidy. But, that is too big a challenge to perform for me now. I can't be neat and tidy. It takes more energy than I have in my bank. So, I have to let go of it. Does it bug me when the house looks messy? Yup. Do I do what I can, and sometimes overdo it? Yup. But, I do not drag with me any expectation of what it "should" be like. "Should" left the building when Elvis did. Should is a guarantee of self-disappointment, in my world. I thought I'd be married, and I am. I thought I'd have children. Nope. Many my age even have grandchildren. Again, nope. I thought I'd have somewhere to go each day. Nope. I thought there would be people I'd see every day that made me feel like I was a valuable member of some group. Again nope. My life doesn't look like that at all. And that's ok. Once I let go of who I expected myself to be, I was free to become who I am. And, btw, I'm a bit awesome. lol
I have a very small life. And, I have a happy life. But, my funeral, whenever that is, won't fill any church, not by half. Because, I am largely unknown. I am too limited to make myself known to very many, and too limited to do what I'd like to do. But, my limitations brought Christ deeper into my heart, so I'd not trade them. Did I think I'd be able to run for breast cancer? Absolutely. Would I have liked to be able to join all the women yesterday who protested. Uh-huh. Do those activities fit into what my abilities allow? Again, negatory. So, forget about who you thought you'd become. You are going to be left smashing your beautiful, unique, fragile head against an RPG. It will end all kinds of bad. Become who you are. You are still able, whatever that looks like in your world. Even if what you are able to do is smile, pray, think, read. Those are glorious things. Would I want to be able to handle myself if I were attacked in some way. I would. That's why I joined the self-defense class at the Y, where I met my spouse. I wanted my life picture to include that color, that ingredient. Does it now? No way. Am I super vulnerable to somebody with ill intentions? I am. Is that uncomfortable? Yes, yes it is. But, that is what the picture of my life's reality looks like. I cannot unpaint the picture. I am unable to defend myself physically. So, I have to learn to be ok with that. I have to figure out how to venture into the world alone without fear. And I have. I encourage you to let go of what you think you "should" be doing in your life. You are now on the little road less traveled. The highway is the wrong path, you will suffer there.
Next, have a self-date. Have a bunch of them. Learn about you like you never met yourself before. Sit, without any noise of any kind, no music, nothing. Find quiet. If you have to wear some earplugs, do that. Block out the world's noise. Close your eyes to visual stimulation. If you don't do that easily, put on a sleep mask. Find a place in your world where the energy feels good. We all know what that means. Some places you just walk in, and they feel tense, a sense of unease. Find one that knows peace. Get into whatever position is comfortable for you. Breathe. Soon, your breathing will become deeper very naturally. You can shut up your head by guiding where it focuses. If you focus on the muscles of your toe, you cannot think of anything else. It creates stillness in your mind. It gives you space for your mind itself to breathe, not just your lungs. Just lay there in your own company and feel yourself in your skin. Listen to your heart. Feel compassion for yourself. Fall in love with yourself. You will never break your own heart. The more you can learn to enjoy your own company, the more you will want to, you will look forward to it. This does not create antisocial behaviors. What it does do is prevent loneliness, a bit. When we are comfortable being alone, it isn't such a sting when it happens against our will, or because illness necessitates it. Learn and know yourself. You probably rock.
Ok, so there have been a few other personal developments in life lately. But now I must stop and go take medicine, I am 10 minutes late already.
Grateful for yesterdays group, and for my effort to get myself there.
Have happy, happy days.
M
Firstly, I would like to encourage any of you pain warriors to follow a couple tips that I wish I'd have taken in the early years.
1. Let go of what you think society expects of you.
2. Let go of what you think your life should look like.
3. Develop the skill to sit with your own company. Just you. No phone, no bike, no motorcar, not a single luxury, like Robinson Caruso, as primitive as can be. Ok. Sorry, for the Gilligan digression. Seriously, you need to get to know yourself better than you do. Trust me.
Society, our culture, and especially all the in-your-face media we are exposed to constantly show us others. What everybody else is doing, thinking, wearing, saying. We are shown how to be entertained, how to entertain. We are given bits of news that are mountains made from molehills because of some political spin or somesuch. And we interpret these wearers, doers, sayers, entertainers, and entertained as how WE should be. How I should live. What is expected of me by others. Here is the truth. This expectation of wearing, doing, blah, blah, blah, blah is a falsehood. You can choose to buy into it or not. Even if you have in the past, now your illness gets in the way and you are sad you can no longer curl/straighten your hair like you used to, etc. Let go. Just let go of it. I GUARANTEE you will feel better. It is too heavy and your physical, mental, and emotional ability to lift such inferred expectations is now limited. You are not required to be like others. In fact, you're going to be happier when you stop comparing your life with theirs. Believe it.
Next, none of us thought we'd get sick. We all, well most of us, had plans, dreams, goals. I used to be just very neat. In my ideal life, there isn't anything out of place, not in my purse, on my nightstand, in my kitchen, no where. I like my surroundings clean and tidy. But, that is too big a challenge to perform for me now. I can't be neat and tidy. It takes more energy than I have in my bank. So, I have to let go of it. Does it bug me when the house looks messy? Yup. Do I do what I can, and sometimes overdo it? Yup. But, I do not drag with me any expectation of what it "should" be like. "Should" left the building when Elvis did. Should is a guarantee of self-disappointment, in my world. I thought I'd be married, and I am. I thought I'd have children. Nope. Many my age even have grandchildren. Again, nope. I thought I'd have somewhere to go each day. Nope. I thought there would be people I'd see every day that made me feel like I was a valuable member of some group. Again nope. My life doesn't look like that at all. And that's ok. Once I let go of who I expected myself to be, I was free to become who I am. And, btw, I'm a bit awesome. lol
I have a very small life. And, I have a happy life. But, my funeral, whenever that is, won't fill any church, not by half. Because, I am largely unknown. I am too limited to make myself known to very many, and too limited to do what I'd like to do. But, my limitations brought Christ deeper into my heart, so I'd not trade them. Did I think I'd be able to run for breast cancer? Absolutely. Would I have liked to be able to join all the women yesterday who protested. Uh-huh. Do those activities fit into what my abilities allow? Again, negatory. So, forget about who you thought you'd become. You are going to be left smashing your beautiful, unique, fragile head against an RPG. It will end all kinds of bad. Become who you are. You are still able, whatever that looks like in your world. Even if what you are able to do is smile, pray, think, read. Those are glorious things. Would I want to be able to handle myself if I were attacked in some way. I would. That's why I joined the self-defense class at the Y, where I met my spouse. I wanted my life picture to include that color, that ingredient. Does it now? No way. Am I super vulnerable to somebody with ill intentions? I am. Is that uncomfortable? Yes, yes it is. But, that is what the picture of my life's reality looks like. I cannot unpaint the picture. I am unable to defend myself physically. So, I have to learn to be ok with that. I have to figure out how to venture into the world alone without fear. And I have. I encourage you to let go of what you think you "should" be doing in your life. You are now on the little road less traveled. The highway is the wrong path, you will suffer there.
Next, have a self-date. Have a bunch of them. Learn about you like you never met yourself before. Sit, without any noise of any kind, no music, nothing. Find quiet. If you have to wear some earplugs, do that. Block out the world's noise. Close your eyes to visual stimulation. If you don't do that easily, put on a sleep mask. Find a place in your world where the energy feels good. We all know what that means. Some places you just walk in, and they feel tense, a sense of unease. Find one that knows peace. Get into whatever position is comfortable for you. Breathe. Soon, your breathing will become deeper very naturally. You can shut up your head by guiding where it focuses. If you focus on the muscles of your toe, you cannot think of anything else. It creates stillness in your mind. It gives you space for your mind itself to breathe, not just your lungs. Just lay there in your own company and feel yourself in your skin. Listen to your heart. Feel compassion for yourself. Fall in love with yourself. You will never break your own heart. The more you can learn to enjoy your own company, the more you will want to, you will look forward to it. This does not create antisocial behaviors. What it does do is prevent loneliness, a bit. When we are comfortable being alone, it isn't such a sting when it happens against our will, or because illness necessitates it. Learn and know yourself. You probably rock.
Ok, so there have been a few other personal developments in life lately. But now I must stop and go take medicine, I am 10 minutes late already.
Grateful for yesterdays group, and for my effort to get myself there.
Have happy, happy days.
M
Sunday, January 1, 2017
The word of the year....
is PEACE. I am not one to make resolutions. I have never been one to do that. But, a friend in a support group encouraged us all to choose one word to guide us through our year ahead. Something that we cherish. Something within our ability to accomplish. Many words were listed, like joy, stamina, communication, hope, fearlessness. Mine is peace. When I feel peaceful, I can endure the discomfort of my body-vessel with far more ease and compassion and understanding than when I lack peace. Without peace, anxiety creeps in. With anxiety, fear. And fear just opens the door to depression. And depression is just a liar. It tries to make me believe what I know to be untrue. And it is very clever and many times is successful in its venture. So, I aim to hold on to my peace. Not let it slip or be stolen away by people, by circumstance, by situation, by symptoms. For that to be my priority, to take care of my peace. Like in Home Economics class in the 7th grade, when we got eggs to care for..... so will my peace be cared for. This is my promise to myself.
I have a full week of physical testing in front of me next week. Also, I am now wearing braces on both my knees, which is a new thing for me. When I take the braces off, the pain in them is just white hot. Both feel very much like if they bend too far, something is going to snap. I have an appointment with a doctor on Tuesday to have them seen to and assessed. It's interesting that no matter how many different symptoms I live with constantly, new ones still alarm me. This is one I will go get attention for.
I have gone for a full month without using any prescription migraine abortive. The first time ever I have written that sentence. During December, I did get some headaches. A few times, I took Excedrin Migraine and it helped. A few other times, I used peppermint oil, sunglasses, and a cold frogg towel, which worked to help. Twice they were so bad that I did have to pull myself out of life, and retreat to darkness to wait it out and pray for sleep. Only twice. All the other ones were bearable. Even when the remedies didn't help to decimate them all the way, they didn't get so bad that I had to remove myself from my activities to endure them. I have tried something new and herbal called Migraine Stop which is a specially formulated magnesium that crosses the blood-brain barrier. Both times it worked. The blessing it is to live without migraines cannot be understated, and I recognize the lack of head pain and thank God for it every time I think to.
May we all look toward the New Year as an opportunity to be the kind of people we were designed to be. My tea bag this morning was meant especially for this day. And I am taking on the challenge.
I have a full week of physical testing in front of me next week. Also, I am now wearing braces on both my knees, which is a new thing for me. When I take the braces off, the pain in them is just white hot. Both feel very much like if they bend too far, something is going to snap. I have an appointment with a doctor on Tuesday to have them seen to and assessed. It's interesting that no matter how many different symptoms I live with constantly, new ones still alarm me. This is one I will go get attention for.
I have gone for a full month without using any prescription migraine abortive. The first time ever I have written that sentence. During December, I did get some headaches. A few times, I took Excedrin Migraine and it helped. A few other times, I used peppermint oil, sunglasses, and a cold frogg towel, which worked to help. Twice they were so bad that I did have to pull myself out of life, and retreat to darkness to wait it out and pray for sleep. Only twice. All the other ones were bearable. Even when the remedies didn't help to decimate them all the way, they didn't get so bad that I had to remove myself from my activities to endure them. I have tried something new and herbal called Migraine Stop which is a specially formulated magnesium that crosses the blood-brain barrier. Both times it worked. The blessing it is to live without migraines cannot be understated, and I recognize the lack of head pain and thank God for it every time I think to.
May we all look toward the New Year as an opportunity to be the kind of people we were designed to be. My tea bag this morning was meant especially for this day. And I am taking on the challenge.
Grateful for the combination of details that make my life so easy and comfortable. Fresh, available, abundant food and water. A safe, secure structure to live inside. Electricity to make life fun, easy, comfortable, the cool air in summer and heat in winter. Plumbing, so our streets don't run with raw sewage like some areas in this world. Access to medicines. And simple faith. Because faith is really the simplest of all things. You just step off the cliff. Grateful for my faith.
Have happy happy happy days all. Let's all be LIGHTHOUSES!!!!!
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