Ok, so for a few weeks I had my crash on Friday night sleeping a large portion of Friday through Saturday.
That's progress since before I was not sleeping for weeks at a time, then I might have a crash for one or more days giving me a false sense of security thinking that I'm going to be able to sleep....maybe. Well, in the past few days, I've been sleeping for a few hours at a time, one or more times a day, it's unpredictable when this might happen. I'm still exhausted from overall lack of sleep, but it seems that it might be moving toward a better outcome....? I'm hitting REM sleep during some of the 2-3 hour naps, so that's a good thing I think, since you need REM for long/short term memory, and also to get more restful sleep.
It could just be that it's been months since I slept normally for any period of time, or it could be that my body is trying to say, you know what, I really like sleep and I'm gonna have some! I'm not sure yet what will happen of course, and I do a lot of "resting" hoping for sleep at the moment since I am so tired all the time and sleep seems to come whenever it wants to and not necessarily when I want it to, but it's not really restful rest since the whole time you're thinking of wanting, wishing for, or wondering if sleep might happen LOL. It's kind of ridiculous really.
Also, on my past birthday, my mother gave me a wonderful pair of shoes that went well with a skirt that I'd gotten, but also a pair of fuzzy socks. I think I may have blogged about fuzzy socks at some point in the past, but those posts have been long gone, so I'll just reiterate. Fuzzy socks are one of the world's greater goods, and it's my express opinion that if everyone had some, there wouldn't be any war in the world! Ok, so maybe that's a bit extreme and far fetched, but it could happen!
Anyway, the pair my mother gave me is so soft I just love them! If I could wear them forever I would, but alas I must change socks when they get dirty......sigh. So, I'll have to try and find out if she remembers where she got them because they are some of the nicest ones I have. When you put them on, they're so soft your feet say aaaaah, and it's just like your feet are getting a lovely hug all day long. I think they had some kind of foot softening thing in them too, which could account for the softness, but yep, they're some of my very favorite ones! THANKS MOM! I'm also wearing my flamingo pj's my mommy got me, they're comfy too LOL. AH PJ'S and FUZZY SOCKS!
The answer to all world strife......I salute you!
Saturday, May 25, 2013
Friday, May 24, 2013
NO HAWT WATAH!
Normally, I'm a stickler for proper spelling, but I thought it'd be funny..........DON'T JUDGE ME!
Anyway, I spent the last 3 days with no hot water. I had some valuable lessons during that time...... The hot water heater kept making a loud popping sound when ever the maintenance man reset the breakers. Of course it never did it while he was in here so he never got to hear it. It turns out it was the heating elements. A professional water heater dood was called in to fix it. He forgot a hose to empty it, tools to work on it etc, but luckily the maintenance man here had everything needed.
Ok now that I've told you about the heater, I'll tell you what I've learned. Cold baths are horrible on arthritis...... Also, cold water is much worse on hair that tends to tangle than hot water. But when you're determined to have a bath, you take one, even if it's cold as heck. And then, you spend about an hour trying to detangle the rat's nest that has become the stuff that USED to be on top of your head.
I'm glad that I now have hot water back, but I think they may have set the temperature a bit too hot, so I might have to ask them to lower it so I don't cook myself in the bath.
Anyway, I spent the last 3 days with no hot water. I had some valuable lessons during that time...... The hot water heater kept making a loud popping sound when ever the maintenance man reset the breakers. Of course it never did it while he was in here so he never got to hear it. It turns out it was the heating elements. A professional water heater dood was called in to fix it. He forgot a hose to empty it, tools to work on it etc, but luckily the maintenance man here had everything needed.
Ok now that I've told you about the heater, I'll tell you what I've learned. Cold baths are horrible on arthritis...... Also, cold water is much worse on hair that tends to tangle than hot water. But when you're determined to have a bath, you take one, even if it's cold as heck. And then, you spend about an hour trying to detangle the rat's nest that has become the stuff that USED to be on top of your head.
I'm glad that I now have hot water back, but I think they may have set the temperature a bit too hot, so I might have to ask them to lower it so I don't cook myself in the bath.
Tuesday, May 14, 2013
Damn you MURPHY!
Murphy's Law......chit happens.
So, you know when you pay your cell phone bill, and a few hours later your cell phone just decides to not boot up and just stare at you with the login screen? Well, it's a fine example of Murphy's Law. I was so mad you can't even understand. I hadn't slept since my Fri/Sat crash session, paid my bill, phone died, called tech support from another phone, recording asks for obscure pin after ensuring you're calling from another phone, sends pin........to broken phone that won't turn on.......such intelligence. Paid for handset protection, extra in bill every month for over a yr for pc of mind........new handset costs money.
In short, cricket sucks. I've never had such shoddy or shady business practices from another company, until after 15 yrs with Sprint, at which time they changed my coverage without telling me and tried to chg me a butt load of money, which was why I changed to cricket in the first place. On the up side, you could get a new phone every yr for free if you wanted to, and even when I accidentally spilled water on my phone they replaced it completely at NO COST to me.....and that was MY fault.
A pc of chit phone that just decides to "reboot" and never turn back on is far from being my fault, and yet even with coverage on the pc of chit, they won't replace it. I'm looking into verizon, there's a turn on fee for me since my credit is less than perfect, so I'll have to save my pennies to get that to go. It's ok though, Cricket showed me that their customer service and business practices are as huge a pc of chit as the equipment they send out. ERGO......lesson learned and in less than 15 yrs so I can now go to a more reputable company, who when you DO purchase protection replaces handsets at NO cost to you. AND they can add my bill onto my existing cable bill so rather than paying 2 diff places I can pay one. So though overall it's more, it's less hassle.
Wish me luck, LOL, *shakes fist at Murphy* I'll get you yet!
So, you know when you pay your cell phone bill, and a few hours later your cell phone just decides to not boot up and just stare at you with the login screen? Well, it's a fine example of Murphy's Law. I was so mad you can't even understand. I hadn't slept since my Fri/Sat crash session, paid my bill, phone died, called tech support from another phone, recording asks for obscure pin after ensuring you're calling from another phone, sends pin........to broken phone that won't turn on.......such intelligence. Paid for handset protection, extra in bill every month for over a yr for pc of mind........new handset costs money.
In short, cricket sucks. I've never had such shoddy or shady business practices from another company, until after 15 yrs with Sprint, at which time they changed my coverage without telling me and tried to chg me a butt load of money, which was why I changed to cricket in the first place. On the up side, you could get a new phone every yr for free if you wanted to, and even when I accidentally spilled water on my phone they replaced it completely at NO COST to me.....and that was MY fault.
A pc of chit phone that just decides to "reboot" and never turn back on is far from being my fault, and yet even with coverage on the pc of chit, they won't replace it. I'm looking into verizon, there's a turn on fee for me since my credit is less than perfect, so I'll have to save my pennies to get that to go. It's ok though, Cricket showed me that their customer service and business practices are as huge a pc of chit as the equipment they send out. ERGO......lesson learned and in less than 15 yrs so I can now go to a more reputable company, who when you DO purchase protection replaces handsets at NO cost to you. AND they can add my bill onto my existing cable bill so rather than paying 2 diff places I can pay one. So though overall it's more, it's less hassle.
Wish me luck, LOL, *shakes fist at Murphy* I'll get you yet!
Sunday, May 12, 2013
Happy "Mother's" Day
Everyone gives tribute to the women in their lives that are mothers, so I wanted to do something a little bit different.
There are a LOT of women in the world that have that motherly spirit and yet can't have children. There are a lot of women in our lives that represent a positive role model as women, and thusly represent the word mother in all of it's wonder, generosity, kindness and strength, be they mothers themselves, or a positive role model for those of us who admire them to follow, I say a wonderful happy day for your embodiment of the SPIRIT of MOTHERHOOD!
You know who you are, you're truly amazing and we love, and admire you!
There are a LOT of women in the world that have that motherly spirit and yet can't have children. There are a lot of women in our lives that represent a positive role model as women, and thusly represent the word mother in all of it's wonder, generosity, kindness and strength, be they mothers themselves, or a positive role model for those of us who admire them to follow, I say a wonderful happy day for your embodiment of the SPIRIT of MOTHERHOOD!
You know who you are, you're truly amazing and we love, and admire you!
Le Sigh
The problem with insomnia is it is tricksy!
You go and go and go and go on little to no sleep until you're finally so exhausted you sleep until you're dehydrated. Then, being well rested, you get a false sense of security, go to bed and roll this way and that for 8 hours until you finally give up. Friday night was my night of exhaustion, which turned out well for Saturday since I had dinner with my family for Mother's Day. So of course, armed with my false sense of security, I marched to bed last night to find that sleep was but a dream.......
After tossing and turning, turning and tossing, I had exactly 0 sleep. If I get lucky, I might get tired enough for a nap, but I can't let it be more than that since I have to go to court Tuesday, and I'd like to not have a topsy turvy kind of schedule beforehand.
I definitely won't complain since I had restful sleep and a lot of it, though it's a bit strange to wake up so dehydrated and disoriented that you have trouble walking straight. There have been times when I have my crash that I sleep for nearly 24 hours straight. It's unpredictable, and probably should be a big concern, but my body needs the rest, so what else can I do but let it have it when it finally is determined to have it?
One day, hopefully soon, I'll have better rest more often and on a more constant basis. But for that to happen, the medical issues need to be addressed. Last night's difficulty was both my hands and feet and back pain all together. Some times it's just one or the other, some days it's anxiety, headaches or whatever decides to manifest that particular day.
All in all, it's just a huge pain in the butt.
You go and go and go and go on little to no sleep until you're finally so exhausted you sleep until you're dehydrated. Then, being well rested, you get a false sense of security, go to bed and roll this way and that for 8 hours until you finally give up. Friday night was my night of exhaustion, which turned out well for Saturday since I had dinner with my family for Mother's Day. So of course, armed with my false sense of security, I marched to bed last night to find that sleep was but a dream.......
After tossing and turning, turning and tossing, I had exactly 0 sleep. If I get lucky, I might get tired enough for a nap, but I can't let it be more than that since I have to go to court Tuesday, and I'd like to not have a topsy turvy kind of schedule beforehand.
I definitely won't complain since I had restful sleep and a lot of it, though it's a bit strange to wake up so dehydrated and disoriented that you have trouble walking straight. There have been times when I have my crash that I sleep for nearly 24 hours straight. It's unpredictable, and probably should be a big concern, but my body needs the rest, so what else can I do but let it have it when it finally is determined to have it?
One day, hopefully soon, I'll have better rest more often and on a more constant basis. But for that to happen, the medical issues need to be addressed. Last night's difficulty was both my hands and feet and back pain all together. Some times it's just one or the other, some days it's anxiety, headaches or whatever decides to manifest that particular day.
All in all, it's just a huge pain in the butt.
Friday, May 10, 2013
Good Morning!!!.......?
I should probably keep a sleep chart or something.
Since I had so little sleep, my body was utterly exhausted and I fell asleep at 630 pmish.....that's when I last checked the clock so it may have been closer to 7. My neighbors were being very kind, generous and thoughtful and decided to slam their doors and bang the walls around midnight, and now I'm wide awake again. I was hoping to at least sleep until the early hours of the morning....and though this counts as early morning, it's a bit too much like middle of the night.
I don't mind when my schedules shift to waking in the early morning nearly as much as I mind when they shift to falling asleep in late morning and sleeping through afternoon etc. To me, that wastes an entire time of day when things are normally open, people are normally awake etc and it causes me to get extremely stressed. That also makes it hard to make, keep etc appointments at any specific time because you're exhausted to begin with and not knowing when your body may allow sleep to come or for how long multiplies the effect.
At least I got close to 5 hours, which for me right now is pretty darn good. So I can't complain too awfully much. Had my neighbor not decided to fight slam or whatever is going on over there I may have even gotten somewhat close to a full night's rest, even though I may have woken early in the daytime. That would have been perfectly fine with me.
I have lunch with my family this Saturday, so hopefully a little rest is forthcoming, and at some kind of logical time so that meeting people is not a complete stress. I hate being exhausted when I try to do things. It's no fun for me, and I'm sure I'm not very good company for them either. I also have court this upcoming Tuesday afternoon, even though I told the police I didn't want to press charges on the young man that was drunk and kept knocking on my door and eventually tried to push his way in. I think he was just drunk and confused, not really trying to come into my house so much as he thought he knew who lived here and wanted in out of the rain. I guess the state picks up whatever they feel the need to pick up regardless of whether we want them to or not. Besides he's in enough trouble without additional charges being trumped up on him as it is.
If they give me time or license to speak freely, I'll probably make that point known. I'm sick of our country and legal systems pushing the envelope and trying to make bigger law breakers of us all. I'm sure that right now, sitting here and blogging, I'm probably breaking some inane law that could land me in prison/jail and those of you reading it in jail as well. There's probably some law against breathing by now........Ok maybe that's a little ridiculous, but seriously, they're getting ridiculous with laws these days.
Things like aggravated menacing. What the EFF is that anyway? If I look at someone and say GRRR, am I guilty? I'm sorry, but I really think there should be laws, but going nuts with them is a bit out of hand.
At any rate, the point is, I'm hopeful that sleeping is at some kind of logical time to cover all of these times and things I must do in the near future, and such that I won't be exhausted while trying to do them.
Since I had so little sleep, my body was utterly exhausted and I fell asleep at 630 pmish.....that's when I last checked the clock so it may have been closer to 7. My neighbors were being very kind, generous and thoughtful and decided to slam their doors and bang the walls around midnight, and now I'm wide awake again. I was hoping to at least sleep until the early hours of the morning....and though this counts as early morning, it's a bit too much like middle of the night.
I don't mind when my schedules shift to waking in the early morning nearly as much as I mind when they shift to falling asleep in late morning and sleeping through afternoon etc. To me, that wastes an entire time of day when things are normally open, people are normally awake etc and it causes me to get extremely stressed. That also makes it hard to make, keep etc appointments at any specific time because you're exhausted to begin with and not knowing when your body may allow sleep to come or for how long multiplies the effect.
At least I got close to 5 hours, which for me right now is pretty darn good. So I can't complain too awfully much. Had my neighbor not decided to fight slam or whatever is going on over there I may have even gotten somewhat close to a full night's rest, even though I may have woken early in the daytime. That would have been perfectly fine with me.
I have lunch with my family this Saturday, so hopefully a little rest is forthcoming, and at some kind of logical time so that meeting people is not a complete stress. I hate being exhausted when I try to do things. It's no fun for me, and I'm sure I'm not very good company for them either. I also have court this upcoming Tuesday afternoon, even though I told the police I didn't want to press charges on the young man that was drunk and kept knocking on my door and eventually tried to push his way in. I think he was just drunk and confused, not really trying to come into my house so much as he thought he knew who lived here and wanted in out of the rain. I guess the state picks up whatever they feel the need to pick up regardless of whether we want them to or not. Besides he's in enough trouble without additional charges being trumped up on him as it is.
If they give me time or license to speak freely, I'll probably make that point known. I'm sick of our country and legal systems pushing the envelope and trying to make bigger law breakers of us all. I'm sure that right now, sitting here and blogging, I'm probably breaking some inane law that could land me in prison/jail and those of you reading it in jail as well. There's probably some law against breathing by now........Ok maybe that's a little ridiculous, but seriously, they're getting ridiculous with laws these days.
Things like aggravated menacing. What the EFF is that anyway? If I look at someone and say GRRR, am I guilty? I'm sorry, but I really think there should be laws, but going nuts with them is a bit out of hand.
At any rate, the point is, I'm hopeful that sleeping is at some kind of logical time to cover all of these times and things I must do in the near future, and such that I won't be exhausted while trying to do them.
Thursday, May 9, 2013
Restless
Well, after a wonderful hour and half of sleep my body said, ok you've had enough sleep now so it's time to wake up.
So now I'm up for the day (I assume). I thought I'd just go through the history of my disease and hopefully that way get a better grasp on things. Sometimes I find it hard to articulate my thoughts about it to physicians because I feel as if they pass it off as if I'm stupid or crazy or whatever else. Who knows what they think, but I can assure you of this, it's the rare physician who truly cares enough to take the time to listen (no offense to those of you out there who are physicians). I understand that in today's society, they can be quite busy, but the normal run of the mill patients popping in for a cold, or check up don't typically require the level of understanding that someone with a complex problem does. I think perhaps they've forgotten about triaging and putting things in an order of importance.
Nearly 20 years ago, I was a young married woman who was sent to fertility doctors because I'd been married for quite some time and the only whisper of fertility I had was a miscarriage that was undetectable because my hormones never shifted. In other words, my body flat out refused to change in order to support a fetus, therefore traditional means of "detecting pregnancy" did not work on me. I was frantic, I was pregnant, I knew I was and I begged the doctors I worked with to help me because I was having nightmares that my child was in imminent danger and would die if not helped. I was sent to a larger hospital from my clinic in hopes that the doctors there would have a further grasp on what, if anything could be done. I was treated like a stupid child and passed off as an ignorant buffoon. I was told in no uncertain terms by a physician who had less time in medicine than I did that if their pregnancy test did not detect pregnancy, there was no way I could POSSIBLY be pregnant. 2 days later I was hemorrhaging I went to see one of the doctors I worked with, he did a pelvic exam, which revealed I was in fact pregnant and having a miscarriage.
This was my first experience with doctors that don't listen. My one chance in the whole wide world of having a child was summarily snatched from my grasp. Never again did I have so much as a whisper of a chance of motherhood. This also started the decline of my psyche in regards to my womanhood as well. It took me a very long time to come to terms with infertility as it relates to being a "real woman". A few years later when nothing further happened, doctors I worked with at another duty station told me, it might be a good idea if I went to the fertility clinic as we had some amazing doctors there that had great results. I attended my appointments diligently, and nothing happened other than occasionally having cysts show up causing them to have to take me off fertility medication. Still, no one knew what was wrong with me. They chalked it up to an oddity, an otherwise "healthy woman" that for whatever reason refused to get pregnant. They were all very kind, and in their defense, they had no reason to believe that anything was "wrong" with me. At that point I didn't even know to think that.
Well, I began to notice I was gaining weight, and oddly, I was a fairly active person. I had been accustomed to running, or weight training, swimming etc. So to be gaining weight made me wonder what was going on in my physiology to create such a change. I began speaking to doctors about this, and seeing an otherwise "healthy" person, they chalked it up to overeating. I'd never been one to really overeat, and I'd not recently changed eating habits, but in the interest of trying to help things along, I started trying to alter my eating habits to compensate for this shift in weight. In the end, I was still gaining weight, and down to 2 cups of rice a day, and once a week adding campbell's soup to it to flavor and add some additional nutrients since I was quite literally starving myself. I continued to gain weight, although at a very stunted pace.
I began to suspect that something more was going on......and yet I was being told there's no way I could be being honest about what I was eating and weigh what I weighed. Now, any of you that have ever been in the military know, being fat and being in the military do not mix. According to military standards I was now fat. By civilian standards I was probably more like above average? I don't know how to compare it. At any rate, I was told I was crazy, a liar or whatever else. I was seeking help, not seeking a label wrongly placed on me. I was frantic. I had had occasional migraines before all this started, and now they were occurring nearly every day of the week. This was all the more alarming because at the onset of some of them, my vision would completely black out. At the time, I was working in immunizations, and it's a bit offputting when you're getting ready to give someone a shot and out of no where you can't see for a few minutes. For this reason I prepped the needles and then called in the patients, that way, if my vision inexplicably disappeared, I could stand perfectly still and wait for it to return, continue on with my patient and then seek help once I was done.
I was also starting to have pains in my hands and feet whenever the weather shifted, and I was having more and more spinal pain. At this point, there were times when I would also be hit with an abdominal pain so sudden and sharp I would literally be taken down to my knees. I was sent for mri's, cat scans etc. The conclusion was that I had a "typical migraine brain". Which means that it's highly vascular. What happens when a migraine hits is that all the vessels in the brain dilate placing pressure on the nerves, brain etc causing pain. The best guess I have is that the vessels near my eyes were dilating in such a way it was pinching the ocular nerves, but nothing more serious than that.
Around this time, I was getting depressed because the doctors I worked with every day and KNEW me, knew I was teaching others to care for patients, how to treat them etc., were treating me like a 2nd class citizen. In the Navy, a Corpsman is near to the equivalent of a P.A. without a license. We see patients, and treat them since the influx of patients can far exceed the M.D.'s capacity to see them all. When and if needed we would simply knock on this or that doctor's door or wait til they were at the central desk and get a signature on a prescription etc. If a patient needed higher than our level of diagnosis we would set that chart aside for a doctor's exam. Now, I was running the area at the time and teaching and evaluating "strikers" who are people that want to get into Hospital Corpsman "A" school. Somehow, there was a rift in my ability to do my job and the way in which the physicians I worked with were viewing me. To be perfectly honest, I think it all hinged in weight....fat = stoopid......and yes I know I misspelled it, when something is beyond stupidity, I tend to label it as stoopid. In their eyes I had ceased being a credible, competent person, though my duties had not changed, nor my ability to do my job or handle a huge amount of responsibility. I'm not sure who or what they thought was doing that.....perhaps the thin me took over and they only saw the fat me whenever they were out of their closed doors.
I'm not sure how it happened, but a new young intern or resident that was specializing in internal medicine took me aside to her office. She asked me to bring family photos, did every kind of blood test etc she could think of. It turns out her hunch (and mine) was right. Now, I can't recall the name of the test at this time, it will probably come to me when I'm not trying to think of it.....that happens. But estrogen to androgen levels should be under 2 : 1. If it's above that PCOD is suspected. Mine blew the numbers off the charts. I was in over the 90th percentile.....meaning at that time 90% of women at my level of the disease had diabetes. Now, PCOD has also been termed Stein-Leventhal syndrome. In the past 18 years since my diagnosis several things have happened. They've retermed it as PCOS, changing it from a disease to a syndrome.....not sure how this benefits things, but to me it downplays it's significance and insidiousness. I'll explain why it will always be PCOD to me (Polycystic Ovarian Disease).
At the time of my diagnosis, not much was known about it, when I went to the fertility doctors with my brand spankin new diagnosis, I believed more help would be forthcoming.....I was wrong. All they seemed to know was that it affected fertility and could cause women to become diabetic. They absolutely flat out refused to believe that it could cause shifts in weight, although when they treated me with birth control (the only known treatment at the time) I lost 30 pounds in 1 month......talk about frightening. Now it's recognized that this is also a systemwide endocrine disorder, and that insulin receptors are resistant to existing insulin created by your pancreas. Your body is in essence telling you, food? what's that? IDK what to do with this stuff.....let's send it to the fat cells til we figure it out. Some food may be processed, but the majority of it is shipped off. Most foods break down to different types of sugars etc that need insulin in order to be processed and used by the body. PCOD does not allow for this to happen very well.
It's been 18 years since my diagnosis....roughly could be a bit more or less, but I think it's more. And they're only just now in the past 5-6 years recognizing the endocrine affects. I told them 18 years ago what it was doing to me, imagine how famous they would have been had they listened. They've STILL not heard me fully. I will illustrate. When I entered the military, I had a full spinal x-ray. This revealed a minor curvature in the lumbar region of my spine. I had NO pain or side effects from this curvature. After 2 years of struggling with my fertility, weight, migraines etc, either just prior or just after my diagnosis (forgive me I am not sure what the timeline was exactly, I think it was after). I was having so much back pain, I talked to one of my friends in the x-ray department, and decided he needed the practice doing more time in the dark room, and so he did a full spinal on me. He brought it to my department, and put it on the viewer. Now, prior to this x-ray I'd seen one of the doctors I worked with and told him I was having some pretty severe back pain. He assured me that scoliosis could NOT advance in adulthood......in other words, once you hit puberty your spine would be as curvy as it would EVER be. That same doctor happened to be walking by when my friend put my x-ray on the viewer for me to see and his exact words were "HOLY SHIT! WHO'S SPINAL X-RAY IS THAT!?" To which I replied, it's mine....so much for your theory that scoliosis can't advance in adulthood, and btw your bedside manner needs some improvement, could you imagine if I were with a patient and it happened to be theirs? What we viewed was a spine that began curving at the neck, back and forth all the way to the tailbone, which was also akimbo.
There is far far more to this disease than doctors are willing to listen to or understand. For nearly 20 years, even without treatment I've fought the symptoms that all came to me during that time period. I should have full blown diabetes.....I'm borderline. The doctors absolutely refuse to look at me like a complete picture. I do think that some understand that it can affect cholesterol, but I don't think all understand that aspect of it. Mine has been high since my diagnosis. I should have had a stroke, high blood pressure etc from that. I haven't. It is my firm belief that everything is related. The frequency of migraines, the arthritic type pain, the spinal curvatures. I believe that this disease if sapping the calcium or connective tissues from my body causing this to advance at an accelerated rate. I'm now at a point where my body acts like that of a 90 year old woman, instead of a woman in the prime of her life. It scares me to death the lack of understanding. MY GOD ARE YOU BLIND!? All of these things began happening to me simultaneously.....that would be one HELL of a coincidence. Sherlock Holmes would say, the simplest solution is usually the correct one. I'm sorry, but the simplest thing I can think of in this situation is, I'm one hell of a learning case, AND a prime example of just how insidious this disease is and can be. Even if my symptoms can't be reversed Please God let them see.....open their eyes and help keep another woman from going through the suffering that I've had to go through due to sheer blindness and disregard! How can all of this happen at the same time and NOT be part and parcel of the same process? It's not a piecemeal picture, it's a full mural painted in perfect detail for you if you're willing to see it.
After my initial diagnosis, I ran into other women that had also had symptoms similar to mine, and I encouraged the doctors that I worked with to do the estrogen and androgen comparison for them, they were diagnosed earlier than I was, so I'm hopeful that they were luckier to avoid some of the more insidious effects of this disease, but Doctors have GOT to open their eyes and listen to patients.....learn to look a the full picture and not just this or that piece. It's all well and good to treat symptoms but if you're not addressing the problem, it won't do any good. I wish a doctor would stumble on this, see it and say my GOD how did I ever miss this with my patients, it makes perfect sense. Now 20 years later, I can barely walk without my hips going out of joint, or sit or stand for long periods of time without agonizing burning pain, or sleep without back, knee, hand or foot pain. I'm a lil old woman in a young woman's body......help, please God help me to keep other women from this agony and terror.
Now I will say my PTSD is not related, however, it is being exacerbated in part due to these things above since I'm so scared about my future. Longevity runs in my family, my one Grandmother lived til 86 the other well into her 90's If I'm like this now.......how would I be at that age. I've applied for disability and I pray to God I get it soon so I can stabilize and maybe find some help to slow or stop this process. If I can't slow it, I'm afraid I am not going to fair very well. Although nearly 20 years have passed and I've fought the good fight so far.
Hopefully I've covered everything.......although I'm sure I've missed things here or there, I tend to do that since there is so much going on all the time, and I tend to forget when it's not actively happening.
So now I'm up for the day (I assume). I thought I'd just go through the history of my disease and hopefully that way get a better grasp on things. Sometimes I find it hard to articulate my thoughts about it to physicians because I feel as if they pass it off as if I'm stupid or crazy or whatever else. Who knows what they think, but I can assure you of this, it's the rare physician who truly cares enough to take the time to listen (no offense to those of you out there who are physicians). I understand that in today's society, they can be quite busy, but the normal run of the mill patients popping in for a cold, or check up don't typically require the level of understanding that someone with a complex problem does. I think perhaps they've forgotten about triaging and putting things in an order of importance.
Nearly 20 years ago, I was a young married woman who was sent to fertility doctors because I'd been married for quite some time and the only whisper of fertility I had was a miscarriage that was undetectable because my hormones never shifted. In other words, my body flat out refused to change in order to support a fetus, therefore traditional means of "detecting pregnancy" did not work on me. I was frantic, I was pregnant, I knew I was and I begged the doctors I worked with to help me because I was having nightmares that my child was in imminent danger and would die if not helped. I was sent to a larger hospital from my clinic in hopes that the doctors there would have a further grasp on what, if anything could be done. I was treated like a stupid child and passed off as an ignorant buffoon. I was told in no uncertain terms by a physician who had less time in medicine than I did that if their pregnancy test did not detect pregnancy, there was no way I could POSSIBLY be pregnant. 2 days later I was hemorrhaging I went to see one of the doctors I worked with, he did a pelvic exam, which revealed I was in fact pregnant and having a miscarriage.
This was my first experience with doctors that don't listen. My one chance in the whole wide world of having a child was summarily snatched from my grasp. Never again did I have so much as a whisper of a chance of motherhood. This also started the decline of my psyche in regards to my womanhood as well. It took me a very long time to come to terms with infertility as it relates to being a "real woman". A few years later when nothing further happened, doctors I worked with at another duty station told me, it might be a good idea if I went to the fertility clinic as we had some amazing doctors there that had great results. I attended my appointments diligently, and nothing happened other than occasionally having cysts show up causing them to have to take me off fertility medication. Still, no one knew what was wrong with me. They chalked it up to an oddity, an otherwise "healthy woman" that for whatever reason refused to get pregnant. They were all very kind, and in their defense, they had no reason to believe that anything was "wrong" with me. At that point I didn't even know to think that.
Well, I began to notice I was gaining weight, and oddly, I was a fairly active person. I had been accustomed to running, or weight training, swimming etc. So to be gaining weight made me wonder what was going on in my physiology to create such a change. I began speaking to doctors about this, and seeing an otherwise "healthy" person, they chalked it up to overeating. I'd never been one to really overeat, and I'd not recently changed eating habits, but in the interest of trying to help things along, I started trying to alter my eating habits to compensate for this shift in weight. In the end, I was still gaining weight, and down to 2 cups of rice a day, and once a week adding campbell's soup to it to flavor and add some additional nutrients since I was quite literally starving myself. I continued to gain weight, although at a very stunted pace.
I began to suspect that something more was going on......and yet I was being told there's no way I could be being honest about what I was eating and weigh what I weighed. Now, any of you that have ever been in the military know, being fat and being in the military do not mix. According to military standards I was now fat. By civilian standards I was probably more like above average? I don't know how to compare it. At any rate, I was told I was crazy, a liar or whatever else. I was seeking help, not seeking a label wrongly placed on me. I was frantic. I had had occasional migraines before all this started, and now they were occurring nearly every day of the week. This was all the more alarming because at the onset of some of them, my vision would completely black out. At the time, I was working in immunizations, and it's a bit offputting when you're getting ready to give someone a shot and out of no where you can't see for a few minutes. For this reason I prepped the needles and then called in the patients, that way, if my vision inexplicably disappeared, I could stand perfectly still and wait for it to return, continue on with my patient and then seek help once I was done.
I was also starting to have pains in my hands and feet whenever the weather shifted, and I was having more and more spinal pain. At this point, there were times when I would also be hit with an abdominal pain so sudden and sharp I would literally be taken down to my knees. I was sent for mri's, cat scans etc. The conclusion was that I had a "typical migraine brain". Which means that it's highly vascular. What happens when a migraine hits is that all the vessels in the brain dilate placing pressure on the nerves, brain etc causing pain. The best guess I have is that the vessels near my eyes were dilating in such a way it was pinching the ocular nerves, but nothing more serious than that.
Around this time, I was getting depressed because the doctors I worked with every day and KNEW me, knew I was teaching others to care for patients, how to treat them etc., were treating me like a 2nd class citizen. In the Navy, a Corpsman is near to the equivalent of a P.A. without a license. We see patients, and treat them since the influx of patients can far exceed the M.D.'s capacity to see them all. When and if needed we would simply knock on this or that doctor's door or wait til they were at the central desk and get a signature on a prescription etc. If a patient needed higher than our level of diagnosis we would set that chart aside for a doctor's exam. Now, I was running the area at the time and teaching and evaluating "strikers" who are people that want to get into Hospital Corpsman "A" school. Somehow, there was a rift in my ability to do my job and the way in which the physicians I worked with were viewing me. To be perfectly honest, I think it all hinged in weight....fat = stoopid......and yes I know I misspelled it, when something is beyond stupidity, I tend to label it as stoopid. In their eyes I had ceased being a credible, competent person, though my duties had not changed, nor my ability to do my job or handle a huge amount of responsibility. I'm not sure who or what they thought was doing that.....perhaps the thin me took over and they only saw the fat me whenever they were out of their closed doors.
I'm not sure how it happened, but a new young intern or resident that was specializing in internal medicine took me aside to her office. She asked me to bring family photos, did every kind of blood test etc she could think of. It turns out her hunch (and mine) was right. Now, I can't recall the name of the test at this time, it will probably come to me when I'm not trying to think of it.....that happens. But estrogen to androgen levels should be under 2 : 1. If it's above that PCOD is suspected. Mine blew the numbers off the charts. I was in over the 90th percentile.....meaning at that time 90% of women at my level of the disease had diabetes. Now, PCOD has also been termed Stein-Leventhal syndrome. In the past 18 years since my diagnosis several things have happened. They've retermed it as PCOS, changing it from a disease to a syndrome.....not sure how this benefits things, but to me it downplays it's significance and insidiousness. I'll explain why it will always be PCOD to me (Polycystic Ovarian Disease).
At the time of my diagnosis, not much was known about it, when I went to the fertility doctors with my brand spankin new diagnosis, I believed more help would be forthcoming.....I was wrong. All they seemed to know was that it affected fertility and could cause women to become diabetic. They absolutely flat out refused to believe that it could cause shifts in weight, although when they treated me with birth control (the only known treatment at the time) I lost 30 pounds in 1 month......talk about frightening. Now it's recognized that this is also a systemwide endocrine disorder, and that insulin receptors are resistant to existing insulin created by your pancreas. Your body is in essence telling you, food? what's that? IDK what to do with this stuff.....let's send it to the fat cells til we figure it out. Some food may be processed, but the majority of it is shipped off. Most foods break down to different types of sugars etc that need insulin in order to be processed and used by the body. PCOD does not allow for this to happen very well.
It's been 18 years since my diagnosis....roughly could be a bit more or less, but I think it's more. And they're only just now in the past 5-6 years recognizing the endocrine affects. I told them 18 years ago what it was doing to me, imagine how famous they would have been had they listened. They've STILL not heard me fully. I will illustrate. When I entered the military, I had a full spinal x-ray. This revealed a minor curvature in the lumbar region of my spine. I had NO pain or side effects from this curvature. After 2 years of struggling with my fertility, weight, migraines etc, either just prior or just after my diagnosis (forgive me I am not sure what the timeline was exactly, I think it was after). I was having so much back pain, I talked to one of my friends in the x-ray department, and decided he needed the practice doing more time in the dark room, and so he did a full spinal on me. He brought it to my department, and put it on the viewer. Now, prior to this x-ray I'd seen one of the doctors I worked with and told him I was having some pretty severe back pain. He assured me that scoliosis could NOT advance in adulthood......in other words, once you hit puberty your spine would be as curvy as it would EVER be. That same doctor happened to be walking by when my friend put my x-ray on the viewer for me to see and his exact words were "HOLY SHIT! WHO'S SPINAL X-RAY IS THAT!?" To which I replied, it's mine....so much for your theory that scoliosis can't advance in adulthood, and btw your bedside manner needs some improvement, could you imagine if I were with a patient and it happened to be theirs? What we viewed was a spine that began curving at the neck, back and forth all the way to the tailbone, which was also akimbo.
There is far far more to this disease than doctors are willing to listen to or understand. For nearly 20 years, even without treatment I've fought the symptoms that all came to me during that time period. I should have full blown diabetes.....I'm borderline. The doctors absolutely refuse to look at me like a complete picture. I do think that some understand that it can affect cholesterol, but I don't think all understand that aspect of it. Mine has been high since my diagnosis. I should have had a stroke, high blood pressure etc from that. I haven't. It is my firm belief that everything is related. The frequency of migraines, the arthritic type pain, the spinal curvatures. I believe that this disease if sapping the calcium or connective tissues from my body causing this to advance at an accelerated rate. I'm now at a point where my body acts like that of a 90 year old woman, instead of a woman in the prime of her life. It scares me to death the lack of understanding. MY GOD ARE YOU BLIND!? All of these things began happening to me simultaneously.....that would be one HELL of a coincidence. Sherlock Holmes would say, the simplest solution is usually the correct one. I'm sorry, but the simplest thing I can think of in this situation is, I'm one hell of a learning case, AND a prime example of just how insidious this disease is and can be. Even if my symptoms can't be reversed Please God let them see.....open their eyes and help keep another woman from going through the suffering that I've had to go through due to sheer blindness and disregard! How can all of this happen at the same time and NOT be part and parcel of the same process? It's not a piecemeal picture, it's a full mural painted in perfect detail for you if you're willing to see it.
After my initial diagnosis, I ran into other women that had also had symptoms similar to mine, and I encouraged the doctors that I worked with to do the estrogen and androgen comparison for them, they were diagnosed earlier than I was, so I'm hopeful that they were luckier to avoid some of the more insidious effects of this disease, but Doctors have GOT to open their eyes and listen to patients.....learn to look a the full picture and not just this or that piece. It's all well and good to treat symptoms but if you're not addressing the problem, it won't do any good. I wish a doctor would stumble on this, see it and say my GOD how did I ever miss this with my patients, it makes perfect sense. Now 20 years later, I can barely walk without my hips going out of joint, or sit or stand for long periods of time without agonizing burning pain, or sleep without back, knee, hand or foot pain. I'm a lil old woman in a young woman's body......help, please God help me to keep other women from this agony and terror.
Now I will say my PTSD is not related, however, it is being exacerbated in part due to these things above since I'm so scared about my future. Longevity runs in my family, my one Grandmother lived til 86 the other well into her 90's If I'm like this now.......how would I be at that age. I've applied for disability and I pray to God I get it soon so I can stabilize and maybe find some help to slow or stop this process. If I can't slow it, I'm afraid I am not going to fair very well. Although nearly 20 years have passed and I've fought the good fight so far.
Hopefully I've covered everything.......although I'm sure I've missed things here or there, I tend to do that since there is so much going on all the time, and I tend to forget when it's not actively happening.
Sunday, May 5, 2013
Aftermath
Since I can't sleep anyway, I figured I may as well blog.
So the divorce is final, as you can see my name has changed. I waited until the change was finalized before changing it on blogs etc. I still have yet to change my license, but I did change some other things. It's still very hurtful for me to even think about these things. In my heart I'm still married to my husband, when in reality he's gotten what he said he wanted a year ago. He didn't get it in the way he wanted, I'm sure, but he got it all the same.
Anyway, enough about that, it makes me cry, and I'm a bit tired of crying.
My hands, feet, hip and one of my ankles has been acting up lately whenever I try to lie down. They just feel all hollow and achy. That just makes me fidgety and unable to sleep. I'm kind of tired of not having a set schedule, ANY SCHEDULE would do. As long as it was consistent I think I'd be happy. It's all well and good to sleep when and if I can, but at some point I'd like to see if I can get to the point where I'm healthy and consistent enough to get back to work. If my issues with sleeping, anxiety attacks and back pain can be addressed I think there's a really good chance that can happen.
I'm not sure what of these things can be helped, if at all, but I'm willing to try, as long as they don't torture me to death in the process. There are other issues, but I think these are the worse ones, and the ones keeping me from being able to see any kind of future for any career at the moment. I've consistently prayed that God help me find the stability I need to get better. I hope that comes sometime soon.
I had a weepy day today, I have a lot of them, but today seemed to be a bit worse.
So the divorce is final, as you can see my name has changed. I waited until the change was finalized before changing it on blogs etc. I still have yet to change my license, but I did change some other things. It's still very hurtful for me to even think about these things. In my heart I'm still married to my husband, when in reality he's gotten what he said he wanted a year ago. He didn't get it in the way he wanted, I'm sure, but he got it all the same.
Anyway, enough about that, it makes me cry, and I'm a bit tired of crying.
My hands, feet, hip and one of my ankles has been acting up lately whenever I try to lie down. They just feel all hollow and achy. That just makes me fidgety and unable to sleep. I'm kind of tired of not having a set schedule, ANY SCHEDULE would do. As long as it was consistent I think I'd be happy. It's all well and good to sleep when and if I can, but at some point I'd like to see if I can get to the point where I'm healthy and consistent enough to get back to work. If my issues with sleeping, anxiety attacks and back pain can be addressed I think there's a really good chance that can happen.
I'm not sure what of these things can be helped, if at all, but I'm willing to try, as long as they don't torture me to death in the process. There are other issues, but I think these are the worse ones, and the ones keeping me from being able to see any kind of future for any career at the moment. I've consistently prayed that God help me find the stability I need to get better. I hope that comes sometime soon.
I had a weepy day today, I have a lot of them, but today seemed to be a bit worse.
Friday, May 3, 2013
A New Life
Well, I call it that at any rate.
At the moment, I've been living a substandard life. SSA sent me to 2 evaluations. One with an orthopedic doctor, and the other with a psychologist. The orthopedic doctor had orders for a spinal xray, which was only for the lower portion of my spine, though I told him it really should be a full spinal xray in order for them to properly evaluate what I've been telling them.
For those of you that have been to San Fransisco, I could compare my spine to that old famous street....Lombardi street. Well, even those of you that haven't might recognize it as it's been on a few movies. It's curvy from the top to the bottom. Of course, the original curve was what the doctor had the benefit of viewing. He had me walk and bend this way and that, asked me questions about this and that. Then as I was sitting on the examination table I must have made a face. He happened to look up and asked does sitting make your back hurt too? I said yes, everything does, sitting standing, walking. He asked if I needed to stand up, I said I think I'll be ok I'll just stretch it out.
The problem isn't in what I can or can't do, it's the length in which I can do them. I explained to him, I'm trying to stay active by doing things around the house, going shopping with my mother etc. But for instance, one day when I did go shopping with her, we were out for a few hours. I sat down when I saw a seat if I needed to give my back a break from walking, or if my mother wanted to try on clothes or what have you. The bigger problem was the next few days. I had a very hard time walking. My hips were so stiff and this was new. I didn't realize what had happened until the 2nd night afterwards, my right hip popped, probably back into place, and then the following morning the left one did.
The other problems are the insomnia. I'm not even sure it's TRUE insomnia, except on some occasions. I simply can't sleep due to pain, anxiety attacks, arthritis in my hands, feet, hips etc. I'm exhausted all the time. I can't sleep, and when and if I do fall asleep, it's usually at a really bad time of day, and then I try to let myself sleep undisturbed until my body says ok wake up now. Because it's so infrequent. I have no schedule. I try to sleep at normal times, but that just simply fails. A set schedule seems an impossibility right now. I sleep when my body finally allows me to, and I wake when it says ok enough sleeping....or now you're not so tired you can't feel the pain.
To be perfectly honest, there are days where I feel perfectly fine, and I think ok maybe I'm getting better and I can go work now, then I do something and either have an anxiety attack, or end up in hot burning pain, and I think oh yeah, I forgot about that.
The psychologist, like the MD also asked a lot of questions, including whether or not I was suicidal, to which I responded, no, I don't believe in that, but there are days I am in so much pain, or am so miserable from all the reasons I can't sleep and out of frustration, and utter exhaustion I pray to God to let me just go. He said from all the responses I gave on this and that, that I sounded agoraphobic. I said, oh no, I don't think that's it, I don't go out my front door, freak out, scream and dive back in slamming and locking the door. I think it's more that I get nervous about all the anxiety attacks that I've had, so I don't want to go places alone, or drive far, because it's a danger. Not to mention, a full blown attack if I can't breathe, or respond to let people know it's ok it will pass, they're likely to call an ambulance. I wouldn't need one, I just need to let the attack pass, and then I'm fine.........exhausted but fine.
I've had full blown attacks after a long day of working before all of this started to get out of hand in my car on the highway on the way home.....talk about terrifying. Fortunately, I was working until 2 am, so there weren't so many cars on the road. I'm not sure if any of you have ever had one, but they are horrifying. You can't breathe, your chest, shoulders etc just feel so tight, it feels like you're just going to die.
The anxiety attacks have gotten out of hand since that photo I had posted a few years ago had shown up on FB. So I know where and when and what has made them get worse, but why all the other things? Why more and more headaches, all different varieties. Why the back, arthritis etc. All of the things that I held in check for 20 years, it's like my body just said ok I give up, I'm just going to be a problem now. But why so severe, and why all at once?
Honestly, I'm a bit scared. If I'm this bad now, what will I be like in 20 or 30 years?
At the moment, I've been living a substandard life. SSA sent me to 2 evaluations. One with an orthopedic doctor, and the other with a psychologist. The orthopedic doctor had orders for a spinal xray, which was only for the lower portion of my spine, though I told him it really should be a full spinal xray in order for them to properly evaluate what I've been telling them.
For those of you that have been to San Fransisco, I could compare my spine to that old famous street....Lombardi street. Well, even those of you that haven't might recognize it as it's been on a few movies. It's curvy from the top to the bottom. Of course, the original curve was what the doctor had the benefit of viewing. He had me walk and bend this way and that, asked me questions about this and that. Then as I was sitting on the examination table I must have made a face. He happened to look up and asked does sitting make your back hurt too? I said yes, everything does, sitting standing, walking. He asked if I needed to stand up, I said I think I'll be ok I'll just stretch it out.
The problem isn't in what I can or can't do, it's the length in which I can do them. I explained to him, I'm trying to stay active by doing things around the house, going shopping with my mother etc. But for instance, one day when I did go shopping with her, we were out for a few hours. I sat down when I saw a seat if I needed to give my back a break from walking, or if my mother wanted to try on clothes or what have you. The bigger problem was the next few days. I had a very hard time walking. My hips were so stiff and this was new. I didn't realize what had happened until the 2nd night afterwards, my right hip popped, probably back into place, and then the following morning the left one did.
The other problems are the insomnia. I'm not even sure it's TRUE insomnia, except on some occasions. I simply can't sleep due to pain, anxiety attacks, arthritis in my hands, feet, hips etc. I'm exhausted all the time. I can't sleep, and when and if I do fall asleep, it's usually at a really bad time of day, and then I try to let myself sleep undisturbed until my body says ok wake up now. Because it's so infrequent. I have no schedule. I try to sleep at normal times, but that just simply fails. A set schedule seems an impossibility right now. I sleep when my body finally allows me to, and I wake when it says ok enough sleeping....or now you're not so tired you can't feel the pain.
To be perfectly honest, there are days where I feel perfectly fine, and I think ok maybe I'm getting better and I can go work now, then I do something and either have an anxiety attack, or end up in hot burning pain, and I think oh yeah, I forgot about that.
The psychologist, like the MD also asked a lot of questions, including whether or not I was suicidal, to which I responded, no, I don't believe in that, but there are days I am in so much pain, or am so miserable from all the reasons I can't sleep and out of frustration, and utter exhaustion I pray to God to let me just go. He said from all the responses I gave on this and that, that I sounded agoraphobic. I said, oh no, I don't think that's it, I don't go out my front door, freak out, scream and dive back in slamming and locking the door. I think it's more that I get nervous about all the anxiety attacks that I've had, so I don't want to go places alone, or drive far, because it's a danger. Not to mention, a full blown attack if I can't breathe, or respond to let people know it's ok it will pass, they're likely to call an ambulance. I wouldn't need one, I just need to let the attack pass, and then I'm fine.........exhausted but fine.
I've had full blown attacks after a long day of working before all of this started to get out of hand in my car on the highway on the way home.....talk about terrifying. Fortunately, I was working until 2 am, so there weren't so many cars on the road. I'm not sure if any of you have ever had one, but they are horrifying. You can't breathe, your chest, shoulders etc just feel so tight, it feels like you're just going to die.
The anxiety attacks have gotten out of hand since that photo I had posted a few years ago had shown up on FB. So I know where and when and what has made them get worse, but why all the other things? Why more and more headaches, all different varieties. Why the back, arthritis etc. All of the things that I held in check for 20 years, it's like my body just said ok I give up, I'm just going to be a problem now. But why so severe, and why all at once?
Honestly, I'm a bit scared. If I'm this bad now, what will I be like in 20 or 30 years?
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