In my last post I mentioned finally seeing a good Endocrinologist. One who, at our first meeting, based on my history alone said "I'll be stunned if it isn't CAH."
Monday October 22nd came and found me once again sitting down with my new Endo after tests she ordered. I was a nervous wreck, the night before I was in the shower sobbing, and then on the phone with my sister terrified that the tests would come back negative. I mean really, who in their right mind wishes they were going to be officially diagnosed with a birth defect? But that's just what I was hoping. Negative results would mean that I didn't have CAH and we'd be back to "I have no idea what is wrong with you." Lynne did a wonderful job of helping me calm down, and reminded me that it wasn't just my Endo that thought it was CAH as Lynne and I had spent time researching it and comparing notes with my life.
The fear however was still there. All my life I was so used to hearing things from doctors like "Well given everything you've been living with, I'm stunned you're even alive. But we have no idea what's wrong with you." I was terrified Monday was going to bring another "Well clearly you have health issues, but we still have no idea what's wrong with you."
I really need not have worried, because my new Endo, well she was not the least bit stunned. I do in fact have Congenital Adrenal Hyperplasia (CA) and have had it since birth. Thus Congenital. So Monday, after a lifetime of suffering, I started on treatment for it. One of the many crushing symptoms of it was an inability to sleep in any way that was really healthy. It was this, and the weight problems I have that finally had me at the Endo's since my primary care had no clue. She's a wonderful doctor, but the most recent in a long line of Doctors that had marveled at the fact that I was alive at all. She suggested the new Endo. I owe that woman a big hug at the very least.
So, I started on new meds Monday. Wednesday night I went to bed, still not having noticed a difference in my sleep behavior hoping it would change soon. Nine hours later I awoke to the sun shining in my bedroom and no idea what had happened. Nine hours of solid sleep was a miracle for me. A major one! Had a spot of breakfast and my morning meds (which include the new ones for CAH) and then took a 45 minute nap! Not content, and worried this was a fluke, I went to bed Thursday night, hoping the new sleep would last. I woke up once for breakfast and pills and again took a short nap. Almost 12 hours of sleep waking up briefly only once. Friday night, went to sleep, rose for breakfast and pills and then back to sleep. 10 hours last night.
God willing it shall continue! And as I understand things, it should.
There are other signs that I will not bore you with that also indicate real progress here. So it's not longer a 'possibility' of progress here, it is actual progress. And I shall be eternally grateful for the change this diagnosis, and treatment has brought to my life. My whole life I've been waiting for this. The new treatment however will do nothing to change my salt issues, so I'm still going to be consuming staggering amounts of salt. I can live with that!
Saturday, October 27, 2012
Wednesday, September 26, 2012
A possibility of progress. . .
I finally managed to get to a new Endo this month. My GP has wanted me to go now for years. But it's just not been something I was able to handle financially, or emotionally.
In July, I reached the point where I felt confident this was something I could manage all the way around, and my own research had led me to some conclusions that could explain so much about my life, my medical history, and health issues I've been dealing with, many of them for my entire life.
Irony of ironies, having only just found my way to the information myself, sitting down with an Endo and describing all the minor, but life long issues we've never fully been able to deal with, she said "I'll be stunned if it isn't CAH." I didn't lead her to it, just told her what I've been dealing with for so long. To hear her reach the same conclusion without even suggesting it, well it was at once empowering as it was frightening.
CAH is Congenital Adrenal Hyperplasia. Over simplified, it means, that at some point during pregnancy, something didn't quite go right, and I was born with a messed up body. Depending on it's severity, it can kill outright, usually within the first few weeks of life, or leave one with a lifetime of problems.
You can figure out which one I got.
One of the biggest indicators of this has been a series of jokes with my family and friends, and instructions from my childhood doctor. You see most people need to watch their salt intake to prevent them from getting too much and risking health problems. A fairly normal, healthy diet and you'll get just enough salt to do fine. For my whole life, I've had to consume frankly astonishing amounts of salt. Even to this day I'm refilling the salt shaker on the table once a month or so, and I'm the only one that lives here. So to the right of course is more than a pound of salt, and in most houses this will last more than a year. In my house, I go through three pounds a year at least. If I don't, I get sick. My blood work shows as being off, which of course in the worst case, means dehydration and IVs. This is just not exactly normal. It's the variant of CAH known as "Salt Wasting" and the one that usually kills in the first weeks of life. Simply put, it means I go through salt way quicker than most people, and have to constantly replenish it. My childhood doctor told my parents that "for whatever reason" my body goes through salt much quicker and that not only was it okay for me eat lots of it, that I actually should. And of course nothing crazier for parents to see than their child hit a salt craving and watch as I'd just pour salt into my hand and lick it up. Over time, that hasn't changed at all. Though now when I get hit with a salt craving, I'll dive into a jar of dill pickles and not come out until it's empty, juice and all.
Tomorrow early I'll be checking into the hospital as the spend time running tests on my blood. It promises to be great fun, if you like being stuck with needles as the take blood out of you, and inject stuff in.
Once they release me, a few weeks later, I'll have the results and another meeting with the Endo.
She's assured me, that if this diagnosis is correct and confirmed, it's treatable and I can live a normal healthy life. But the upside to all this is that many of the health issues that I'm taking meds for, well they probably won't need medication before to long, and I'll be able to shed weight again with proper diet and exercise. Which in the last seven some years hasn't been working. I'll be thrilled to get rid of this extra weight, and be taking less meds. But eventually it's going to mean buying new clothes, but fitting back into my old jeans. I look forward to that part. So there's a possibility of progress on the wind, and of course major health benefits, including but not limited to being able to sleep through the night for the first time in years. That will be awesome!
Since the meeting with the Endo I've been running the stages of grief. And just in time for my day with the leeches (kidding folks) I've made some kind of peace with it I think. This is a battle in one form or another I've been fighting most of my life and my father in particular always chalked it up to me being crazy, which meant more head doctors than time with someone who could really help. Yes, without question CAH causes moodiness, depression and plenty of other problems as your body tried to keep you going as your electrolyte levels and hormones swing madly. But it doesn't mean you're crazy. Feeling like I've spent my life fighting a monster that really was under the bed that everyone said was all in my head? Well it's depressing and feels like a life, not exactly wasted, but stolen from me once again. Thus the stages of grief.
In the end, it's not what was, or could have been that really engages me here, it's a possibility of progress.
In July, I reached the point where I felt confident this was something I could manage all the way around, and my own research had led me to some conclusions that could explain so much about my life, my medical history, and health issues I've been dealing with, many of them for my entire life.
Irony of ironies, having only just found my way to the information myself, sitting down with an Endo and describing all the minor, but life long issues we've never fully been able to deal with, she said "I'll be stunned if it isn't CAH." I didn't lead her to it, just told her what I've been dealing with for so long. To hear her reach the same conclusion without even suggesting it, well it was at once empowering as it was frightening.
CAH is Congenital Adrenal Hyperplasia. Over simplified, it means, that at some point during pregnancy, something didn't quite go right, and I was born with a messed up body. Depending on it's severity, it can kill outright, usually within the first few weeks of life, or leave one with a lifetime of problems.
You can figure out which one I got.
 |
| Yes, a flash picture of salt. |
Tomorrow early I'll be checking into the hospital as the spend time running tests on my blood. It promises to be great fun, if you like being stuck with needles as the take blood out of you, and inject stuff in.
Once they release me, a few weeks later, I'll have the results and another meeting with the Endo.
She's assured me, that if this diagnosis is correct and confirmed, it's treatable and I can live a normal healthy life. But the upside to all this is that many of the health issues that I'm taking meds for, well they probably won't need medication before to long, and I'll be able to shed weight again with proper diet and exercise. Which in the last seven some years hasn't been working. I'll be thrilled to get rid of this extra weight, and be taking less meds. But eventually it's going to mean buying new clothes, but fitting back into my old jeans. I look forward to that part. So there's a possibility of progress on the wind, and of course major health benefits, including but not limited to being able to sleep through the night for the first time in years. That will be awesome!
Since the meeting with the Endo I've been running the stages of grief. And just in time for my day with the leeches (kidding folks) I've made some kind of peace with it I think. This is a battle in one form or another I've been fighting most of my life and my father in particular always chalked it up to me being crazy, which meant more head doctors than time with someone who could really help. Yes, without question CAH causes moodiness, depression and plenty of other problems as your body tried to keep you going as your electrolyte levels and hormones swing madly. But it doesn't mean you're crazy. Feeling like I've spent my life fighting a monster that really was under the bed that everyone said was all in my head? Well it's depressing and feels like a life, not exactly wasted, but stolen from me once again. Thus the stages of grief.
In the end, it's not what was, or could have been that really engages me here, it's a possibility of progress.
Sunday, September 16, 2012
The smell remembers when . . .
Imagery can be a powerful thing. It's central to many kinds of relaxation techniques including guided visualizations and meditations. But sometimes it can yield breathtaking surprises when least expected.
Scents, those tiny air born clusters of atoms can trigger relaxation, even memories. Think of how you feel when you're at the beach, imagine the way it sounds, close your eyes and picture in your minds eye the way it looks, and now that awesome smell you associate with the beach.
If you had any success with this brief exercise in guided visualization, the beach you felt, heart, saw and smelled is a specific beach that you have been to and enjoyed. You've also accomplished a well known stress busting means of relaxation. Congratulations! If you didn't don't feel bad, that was a really quick, simple example. Usually there is more involved.
If you didn't, or have never been to a beach to visualize (oh the horror!) then try visualizing everything about a special place that you know well. See how that works? How that feels? Even smells associated with the place?
In our often hectic life, we can be surprised by a sight, sound, or smell that makes us think of somewhere else far away. Guided visualization techniques not withstanding, I'm sure each of you reading this has experienced something like that. Specific places often have a complex mixture of cues that remind us of a specific place. It's the nature of memory. So just as no two types of flowers smell the same, different beaches have their own complex signature. Beaches not withstanding, think of the difference between the way the air smells in the fall, and in the summer time. Two very different scents yes?
As I've mentioned before, I'm a Stargate franchise fan. I've watched pretty much every episode and movie (except Universe) repeatedly for my own enjoyment. I've had many dreams where I've been involved with the program, at the SGC, on Atlantis, or on the various ships they have, working with the amazing people there. I've been through the gate many, many times, but will always remember my first time so clearly. The Gate system is also involved in some of my meditations. Specifically one particular planet that I travel to often. So often I have an apartment there. My apartment is a few short blocks from a glorious beach that I go to quite often to relax. For me the experiences, and the memories they are tied to, are no less real than places I've been to on earth. Like a Star trek: Next generation era holodeck, my mind fills in all the details, ones I don't often notice but are etched into my memories with or without my notice.
Before I go any further, let me mention I've not yet been, in this lifetime, anywhere near the Mediterranean Sea on earth. Never spent time at any beach on the Med so I have no scent linked memories that go with it.
My beach on 427 (P4C-427) however is etched indelibly into my heart and mind in ways I'd even not expected. It is a wonderful place and I can often be found sitting there meditating at all hours of the day and night. It brings me great peace. Often when I'm meditating here on earth, in my mind I first go to my beach on 427 and do my sitting there. So even though I've not fully explored the area, there are scents drifting on the breeze that cannot be missed or mistaken.
I tend, here on earth to eschew scented products most of the time. The chemicals and such they use hardly ever get the smell right. Which is part of why I'm fond of incense. It's made of more natural materials. So imagine my surprise when I bought a bottle of Dawn that was labeled as Mediterranean Lavender and promptly forgot about it until the one I had open was finished.
When I finally did open it and start using it I stopped what I was doing completely stunned. That was my beach the scent they had put into the soap. It honestly surprised me so much I had to stop and read the label since I'd forgotten what I'd bought. honestly I'd not even looked at the label when I got it, I picked it simply because it was purple. No, I'm not kidding. But it smells just like my beach on a completely different planet. That really caught me up short.
I'm reminded of the Trisha Yearwood song "The Song Remembers When." In it she sings about how a song on the radio can bring back a rush of memories. I so get that, and it's a common theme, so much so that there are other songs that say basically the same thing in different ways.
In this case however "The Smell Remembers When." And I have a new dish soap that I'll keep on buying. If only because it makes me think of my other home, far from here.
Scents, those tiny air born clusters of atoms can trigger relaxation, even memories. Think of how you feel when you're at the beach, imagine the way it sounds, close your eyes and picture in your minds eye the way it looks, and now that awesome smell you associate with the beach.
If you had any success with this brief exercise in guided visualization, the beach you felt, heart, saw and smelled is a specific beach that you have been to and enjoyed. You've also accomplished a well known stress busting means of relaxation. Congratulations! If you didn't don't feel bad, that was a really quick, simple example. Usually there is more involved.
If you didn't, or have never been to a beach to visualize (oh the horror!) then try visualizing everything about a special place that you know well. See how that works? How that feels? Even smells associated with the place?
In our often hectic life, we can be surprised by a sight, sound, or smell that makes us think of somewhere else far away. Guided visualization techniques not withstanding, I'm sure each of you reading this has experienced something like that. Specific places often have a complex mixture of cues that remind us of a specific place. It's the nature of memory. So just as no two types of flowers smell the same, different beaches have their own complex signature. Beaches not withstanding, think of the difference between the way the air smells in the fall, and in the summer time. Two very different scents yes?
As I've mentioned before, I'm a Stargate franchise fan. I've watched pretty much every episode and movie (except Universe) repeatedly for my own enjoyment. I've had many dreams where I've been involved with the program, at the SGC, on Atlantis, or on the various ships they have, working with the amazing people there. I've been through the gate many, many times, but will always remember my first time so clearly. The Gate system is also involved in some of my meditations. Specifically one particular planet that I travel to often. So often I have an apartment there. My apartment is a few short blocks from a glorious beach that I go to quite often to relax. For me the experiences, and the memories they are tied to, are no less real than places I've been to on earth. Like a Star trek: Next generation era holodeck, my mind fills in all the details, ones I don't often notice but are etched into my memories with or without my notice.
Before I go any further, let me mention I've not yet been, in this lifetime, anywhere near the Mediterranean Sea on earth. Never spent time at any beach on the Med so I have no scent linked memories that go with it.
My beach on 427 (P4C-427) however is etched indelibly into my heart and mind in ways I'd even not expected. It is a wonderful place and I can often be found sitting there meditating at all hours of the day and night. It brings me great peace. Often when I'm meditating here on earth, in my mind I first go to my beach on 427 and do my sitting there. So even though I've not fully explored the area, there are scents drifting on the breeze that cannot be missed or mistaken.
I tend, here on earth to eschew scented products most of the time. The chemicals and such they use hardly ever get the smell right. Which is part of why I'm fond of incense. It's made of more natural materials. So imagine my surprise when I bought a bottle of Dawn that was labeled as Mediterranean Lavender and promptly forgot about it until the one I had open was finished.
When I finally did open it and start using it I stopped what I was doing completely stunned. That was my beach the scent they had put into the soap. It honestly surprised me so much I had to stop and read the label since I'd forgotten what I'd bought. honestly I'd not even looked at the label when I got it, I picked it simply because it was purple. No, I'm not kidding. But it smells just like my beach on a completely different planet. That really caught me up short.
I'm reminded of the Trisha Yearwood song "The Song Remembers When." In it she sings about how a song on the radio can bring back a rush of memories. I so get that, and it's a common theme, so much so that there are other songs that say basically the same thing in different ways.
In this case however "The Smell Remembers When." And I have a new dish soap that I'll keep on buying. If only because it makes me think of my other home, far from here.
Tuesday, August 28, 2012
I'm Sorry . . .
I am imperfect, flawed, a soul walking my own road to the great path. I walk with kindness, compassion, empathy and honesty. I share things from my own pasts to let people know they are not alone. I have lived, died, been rebirthed of my own ashes and that's just in this trip. I am Buddhist person, a mystical being of light made flesh, I am old, I am young, I share freely not to force my beliefs or experiences on you but to let you know I hear what your heart says even as words may fail us both. If my existence or attempts to temper suffering with kindness and stories from my past, or my future, offend you, please be honest, or simply unfriend me. Do not wait until you are angry, fearful and suffering to lash out at me suddenly. Walk in the light, with me, or without, but do not presume to inflict your limitations on my existence because I am not you. I'm sorry I'm not you now if that offends you, but I have been there before. I walk my path based on my perceptions of what is, not based on yours. I am sorry if this makes anyone uncomfortable.
All roads lead to the great path. Many cross. Fair day my friends.
Monday, August 13, 2012
Monday, August 06, 2012
Calogrenant Week 4, August 6, 2012
If you've not been there yet, clicking on the image above will take you directly to the Calogrenant website.
Wednesday, July 25, 2012
Just a question... When did wanting to see small businesses have a fighting chance against bloated multinationals and wanting to see that ordinary people have a living wage and a place to live and enough to eat and not have to fear that an illness will beggar them become socialism? And if that is socialism, what's so horrible about it? - Gillian Cameron
Monday, July 23, 2012
Victimizing the victims - instead of the perpetrators . . .
I am a survivor of Sexual Assault, which in most states in a first degree felony. My now late husband used power, privilege and money every step of the way to fight from having the light of truth shined on his miserable soul. At every turn he used the courts against me to keep me from having any real closure or protection from his ongoing actions. Six some odd years ago he died while fighting our divorce. He was found in contempt of court repeatedly for violations of retraining orders, failure to appear and continuing to stalk me. He didn't even get a slap on the wrist. His death was the only closure I got. I had to find out about it second hand. My lawyer who'd been notified by the court that the divorce was dismissed because Earl died didn't bother to contact me. A Friend called to let me know when she heard from one of my husband's friends that he had died.
I've often said rapists and sexual predators should be put to death. But you know, I'm not completely sure about that anymore, because frankly, Earl got off easy and "escaped" for now, the consequences of his actions.
Regrettably, we live in a rape culture. Where rapists, and sexual predators are protected while their victims continue to get victimized.
Recently a young woman in Kentucky was sexually assaulted and had pictures of her assault spread to the four winds BY THE two men that committed the assault. It took a year to get the matter into court, and rather than fighting the charges and getting a real sentence, they made a plea arrangement with the court to get what amounts to a slap on the wrist. Outraged, she tweeted their names and what had happened.
So guess who is likely to wind up in jail? The victim!
Savannah Dietrich, 17-Year-Old Sexual Assault Victim, Faces Charge For Naming Attackers
First up we have Austin Zehnder of Kentucky:
Don't you just love those eyes? That winning smile? The hardened chiseled features? Ruggedly handsome or lifelong sociopath. My money is on the later.
Another award winning specimen of humanity here. These men Sexually Assaulted Savannah in Kentucky and posted PICTURES of the act electronically. They violated a young woman without her consent for their own deviant needs and BRAGGED about it to friends and online. They were convicted of First Degree Sexual Assault, A FELONY and given a slap on the wrist while Savannah, rightfully upset and violated may go to jail for letting the world know who these men are? By a FEMALE judge no less.
Once again, Victimizing the victims instead of the perpetrators. Way to go America. Savannah, we are your sisters and we stand with you.
I've often said rapists and sexual predators should be put to death. But you know, I'm not completely sure about that anymore, because frankly, Earl got off easy and "escaped" for now, the consequences of his actions.
Regrettably, we live in a rape culture. Where rapists, and sexual predators are protected while their victims continue to get victimized.
Recently a young woman in Kentucky was sexually assaulted and had pictures of her assault spread to the four winds BY THE two men that committed the assault. It took a year to get the matter into court, and rather than fighting the charges and getting a real sentence, they made a plea arrangement with the court to get what amounts to a slap on the wrist. Outraged, she tweeted their names and what had happened.
So guess who is likely to wind up in jail? The victim!
Savannah Dietrich, 17-Year-Old Sexual Assault Victim, Faces Charge For Naming Attackers
Once again the victim being victimized instead of the perpetrators. So I did some digging, and managed to catch more of the information and most importantly, the names and pictures of the two CONVICTED SEX OFFENDERS that attacked Savannah.
First up we have Austin Zehnder of Kentucky:
 |
| Austin Zehnder - Convicted Of First Degree Sexual Assault, A Felony. |
Next up we have Will Frey III also of Kentucky:
 |
| Will Frey III - Convicted Of First Degree Sexual Assault, A Felony. |
Once again, Victimizing the victims instead of the perpetrators. Way to go America. Savannah, we are your sisters and we stand with you.
Subscribe to:
Posts (Atom)