Talked to my brother tonight, and he told me he saw this episode of Mystery Diagnosis on the Discovery Channel over the weekend, about this lady with neurological disorder, and her symptoms sounded like mine.
(Ironically, I was lying down in my car in a store parking lot at the time, because I've been sick the past week or so, and just running a couple of errands was threatening to set off a POTS flare, was sweating, weak, shaky, and seeing spots, and having slightly funky heart rhythms.)
I learned something new from his telling me about the show, actually. Funny, because just this weekend when it was acting up, I was telling my Dad how I felt like someone had their finger on my carotid artery. My brother started saying how the woman on the show said she "felt like her neck..."and I interrupted him and said "had a finger on her carotid artery!?" And he said
"Yeah!"
I hadn't known that was a common thing until then!
So anyways, that was cool to get to talk with him about that. Now if only I could be as lucky as that lady and find a doctor who will help me get it under control.
Actually, I may have...I went to see an old doctor of mine, a really fabulous man who is a holistic doctor with an M.D.. (The only reason I haven't seen him continually is that I haven't been able to afford long-term treatment with him.)
He thinks the key lies in my adrenals, and I tend to agree...I had another holistic practitioner who helped me at my sickest treat me for that too...So maybe in me that's what triggers it. The adrenal is a very tricky thing, because for some reason most of the medical community doesn't believe in adrenal dysfunction other than complete failure (Addison's Disease.)
He had me do a Saliva Cortisol test, and also ran another Thyroid panel, since my T4 came up low. (It's my understanding that adrenal problems would in turn affect my Thyroid, so...)
I have an phone appointment with him tomorrow afternoon to go over the results, so I'm keeping my fingers crossed we'll have some confirmation of all that, as well as tangible PROOF for the SSA that I am as sick as I say I am. So wish me luck!
Here's the show schedule for the Episode of Mystery Diagnosis. It's on tonight (2am here in the Pacific Time Zone) as well as again on October 3rd. Spread the word!
Discovery Health :: TV Listings :: Mystery Diagnosis
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Monday, September 28, 2009
Saturday, September 26, 2009
Tuesday, September 15, 2009
Article: When Working No Longer Works
This article struck home big time. I went back to work 3 different times after being diagnosed. I hadn't realized how much of my identity and self worth were dependent on my job until I couldn't do it. Especially when it became apparent that I was only hurting myself by continuing to try.
Also, to add to the identity crisis, I had been determined to be financially responsible and successful...I had just gotten my first solo apartment, and was a little over a year into my first car loan.
I still struggle... I can't reconcile myself with being poor. It's not what I envisioned for myself, and it's VERY stressful, having to try and juggle things I need and stretch dollars, and most of all, feel constantly deprived of things most people my age take for granted; going out with friends, buying clothes, the newest techno-gadgets...I'd also hoped to travel...Instead I'm juggling prescripton prices, and drowning in copays and other medical expenses.
Instead, I find that my twenties have slipped away, and, far from having bought my first home, I've moved in with one of my parents, in a new town, far from the friends that helped make life with chronic illnesses bearable. Not to mention that instead of getting better I'm getting worse...
And to top it off, I get to put up with people judging me. I had one aunt imply that I moved in to take advantage of my father. My own mother told me to go back to work, because it's okay for her to be disabled because she's of retirement age, and when I've had the gall to ask for help cleaning up, my father told me it's all in my head.
I'm finally beginning to understand that I can't expect people to understand, not my illness, and not my not working. Why should I care anyhow? They weren't there when I made the decision to stop, hoping it wasn't too late to prevent another crash. They weren't there when I tried to act like it was okay because it was the only sensible decision to stop banging my head against a brick wall. They don't know that despite my outward non-chalance, I took a nosedive into a deep depression, or the panic I felt at the uncertainty of my future, so much so that I actually got even sicker after I stopped working... They don't know, and I'm tired of trying to explain myself.
Agh. Sob story, I know. I'm trying to get more positive, I swear!
So anyways, here's a great article from the Fightingfatigue.org blog, I feel for the author, but at the same time, it's good to hear someone describe something I've been through...
ME/CFS & Fibromyalgia: When Working No Longer Works : FightingFatigue.org
Also, to add to the identity crisis, I had been determined to be financially responsible and successful...I had just gotten my first solo apartment, and was a little over a year into my first car loan.
I still struggle... I can't reconcile myself with being poor. It's not what I envisioned for myself, and it's VERY stressful, having to try and juggle things I need and stretch dollars, and most of all, feel constantly deprived of things most people my age take for granted; going out with friends, buying clothes, the newest techno-gadgets...I'd also hoped to travel...Instead I'm juggling prescripton prices, and drowning in copays and other medical expenses.
Instead, I find that my twenties have slipped away, and, far from having bought my first home, I've moved in with one of my parents, in a new town, far from the friends that helped make life with chronic illnesses bearable. Not to mention that instead of getting better I'm getting worse...
And to top it off, I get to put up with people judging me. I had one aunt imply that I moved in to take advantage of my father. My own mother told me to go back to work, because it's okay for her to be disabled because she's of retirement age, and when I've had the gall to ask for help cleaning up, my father told me it's all in my head.
I'm finally beginning to understand that I can't expect people to understand, not my illness, and not my not working. Why should I care anyhow? They weren't there when I made the decision to stop, hoping it wasn't too late to prevent another crash. They weren't there when I tried to act like it was okay because it was the only sensible decision to stop banging my head against a brick wall. They don't know that despite my outward non-chalance, I took a nosedive into a deep depression, or the panic I felt at the uncertainty of my future, so much so that I actually got even sicker after I stopped working... They don't know, and I'm tired of trying to explain myself.
Agh. Sob story, I know. I'm trying to get more positive, I swear!
So anyways, here's a great article from the Fightingfatigue.org blog, I feel for the author, but at the same time, it's good to hear someone describe something I've been through...
ME/CFS & Fibromyalgia: When Working No Longer Works : FightingFatigue.org
Apathy and Houseguests
I've been feeling so worn out lately. Not just physically, but spiritually as well. I'm maxed out on Zoloft, but I think I may still be depressed. It's weird, there's no rhyme or reason to it...Friday I had to lie down about a dozen times or more before finally being down for the count. (Dysautonomia I guess, still waiting to find out if it could actually be a Thyroid disorder; my T4 came out low, BUT I was having all the symptoms of HYPER-thyroidism: rapid heartrate, hair falling out 10 times worse than usual, gaining & losing weight rapidly, being too hyper to relax even though i was burnt out, dry skin and nails...I checked and it is possible to have both if you have a Thyroid Disorder.)
I got up this morning, and for the life of me, I did not feel like doing anything. I even skipped my meds, which I usually take the second I get up. I can't handle being completely useless though, so I went & took them, made myself breakfast, & after a break, took a shower. So much to do around the house, but I got overwhelmed just thinking about doing anything, so I decided it would be enough just to get myself past this dip and keep myself from falling further into a funk.
I ended up just feeling stressed out. I thought of driving to the beach, taking an impromptu trip to see my peeps in L.A., but in the end, all I ended up doing is dropping off some books at the library, and picking up a few things at the dollar store.
I had spent some time on the computer, but the ergonomic mouse I borrowed from my Dad sets off my tricep pain, which totally stressed me out, too much fighting going on...fighting to keep my mood from falling, fighting my body wanting to lie down, fighting to ignore the pain and concentrate on the other two, while cajoling myself into doing something productive.
Things seemed a little better after I got home though.
And then I was having a nice conversation with my Dad, and he springs on me that we are going to be having a houseguest next month. I knew that, and I was warily looking forward to it. (I don't know if this person likes me much, and I wasn't sure I'd be able to be a very good hostess...) I LOVE being a hostess, and hardly ever get the chance to do it. But on my own pretty much? This was going to mean getting up at a decent hour every day, making breakfast, cleaning up...Stuff I barely manage for myself, okay, actually, don't manage very well at all...but still, I was willing to try. I'm dying for some company, and have been dying to get to show people around my new county...It gorgeous here and I love sharing it...and unfortunately, haven't gotten the chance to do it yet, really with any of my closest friends or family because a 40 minute drive is just too much for them...(That's another story though.)
Then today I find out it's not going to be a couple days to a week, like I'd assumed...but possibly 2-3 MONTHS! WHAT?!? And no one thought to ask me if I could handle this? WTH? I explained the drawbacks to this for me...I'm one of those people who needs alone time to recharge, even before I was sick. Plus, well, I have a hard time seeing people when I'm feeling really bad...I mean, lately, I've often thought about what I wouldn't give to have someone visit me, especially on days when I'm practically glued to the bed...but unless I was violently ill, I'd have to make sure the place was relatively clean and tidy, and even if I was violently ill, I'd probably put on a fresh pair of PJs and do my makeup, make my hair presentable, if only in a ponytail...
It's this bizzare personality quirk I have a I guess...I don't mind telling people all about my illness, but I don't really want them to see it. It's like a dirty little secret or something. I just feel very self-conscious, most of all when I'm in pain. Then there's all that guilt, too. I don't want people to feel sorry for me. Sympathy, kindness, and consideration would be nice, but pity, no. And I feel weird asking for help, or letting on that I can't handle something that I know shouldn't be a problem for someone my age...I feel like they'll think I'm being a baby and presume I'm lying. (Which has been known to happen!)
So anyways, the idea of having a houseguest for months seems pretty overwhelming. My Dad says there are other alternatives, but now I already feel like the bad guy. One more thing that I should be able to do that I can't.
Well, hopefully he'll handle it tactfully for once. And who knows, it might end up being nice to have company...either way, I'm a little nervous about the whole thing...but I guess it's too late now...just amazes me that none of these problems were taken into account, I wasn't taken into account, or consulted on the matter...
I have GOT to start looking at affordable housing apartment complexes & got on their waiting lists. The second I get my SSDI approved, I'm out. The fewer stressors I have, the better, so if I can be free of my dysfunctional family dynamic, that would be GREAT...
I got up this morning, and for the life of me, I did not feel like doing anything. I even skipped my meds, which I usually take the second I get up. I can't handle being completely useless though, so I went & took them, made myself breakfast, & after a break, took a shower. So much to do around the house, but I got overwhelmed just thinking about doing anything, so I decided it would be enough just to get myself past this dip and keep myself from falling further into a funk.
I ended up just feeling stressed out. I thought of driving to the beach, taking an impromptu trip to see my peeps in L.A., but in the end, all I ended up doing is dropping off some books at the library, and picking up a few things at the dollar store.
I had spent some time on the computer, but the ergonomic mouse I borrowed from my Dad sets off my tricep pain, which totally stressed me out, too much fighting going on...fighting to keep my mood from falling, fighting my body wanting to lie down, fighting to ignore the pain and concentrate on the other two, while cajoling myself into doing something productive.
Things seemed a little better after I got home though.
And then I was having a nice conversation with my Dad, and he springs on me that we are going to be having a houseguest next month. I knew that, and I was warily looking forward to it. (I don't know if this person likes me much, and I wasn't sure I'd be able to be a very good hostess...) I LOVE being a hostess, and hardly ever get the chance to do it. But on my own pretty much? This was going to mean getting up at a decent hour every day, making breakfast, cleaning up...Stuff I barely manage for myself, okay, actually, don't manage very well at all...but still, I was willing to try. I'm dying for some company, and have been dying to get to show people around my new county...It gorgeous here and I love sharing it...and unfortunately, haven't gotten the chance to do it yet, really with any of my closest friends or family because a 40 minute drive is just too much for them...(That's another story though.)
Then today I find out it's not going to be a couple days to a week, like I'd assumed...but possibly 2-3 MONTHS! WHAT?!? And no one thought to ask me if I could handle this? WTH? I explained the drawbacks to this for me...I'm one of those people who needs alone time to recharge, even before I was sick. Plus, well, I have a hard time seeing people when I'm feeling really bad...I mean, lately, I've often thought about what I wouldn't give to have someone visit me, especially on days when I'm practically glued to the bed...but unless I was violently ill, I'd have to make sure the place was relatively clean and tidy, and even if I was violently ill, I'd probably put on a fresh pair of PJs and do my makeup, make my hair presentable, if only in a ponytail...
It's this bizzare personality quirk I have a I guess...I don't mind telling people all about my illness, but I don't really want them to see it. It's like a dirty little secret or something. I just feel very self-conscious, most of all when I'm in pain. Then there's all that guilt, too. I don't want people to feel sorry for me. Sympathy, kindness, and consideration would be nice, but pity, no. And I feel weird asking for help, or letting on that I can't handle something that I know shouldn't be a problem for someone my age...I feel like they'll think I'm being a baby and presume I'm lying. (Which has been known to happen!)
So anyways, the idea of having a houseguest for months seems pretty overwhelming. My Dad says there are other alternatives, but now I already feel like the bad guy. One more thing that I should be able to do that I can't.
Well, hopefully he'll handle it tactfully for once. And who knows, it might end up being nice to have company...either way, I'm a little nervous about the whole thing...but I guess it's too late now...just amazes me that none of these problems were taken into account, I wasn't taken into account, or consulted on the matter...
I have GOT to start looking at affordable housing apartment complexes & got on their waiting lists. The second I get my SSDI approved, I'm out. The fewer stressors I have, the better, so if I can be free of my dysfunctional family dynamic, that would be GREAT...
Saturday, September 12, 2009
Cuddle You!
Absolutely adored this story, it's so true about the effect a doggie can have on you, even if they're not specially trained to help or offer soothing portable heat!
The Cuddle Cure
The Cuddle Cure
Friday, September 11, 2009
Fun with weird symptoms...
Well, I guess they would actually fit into the broad spectrum of Dysautonomia. I haven't checked my blood pressure today, mostly because I didn't want to see how fast my heartrate was, but I'd be willing to bet it's pretty darn low, and dropping steadily the more I stay upright.
I hate it. It feels so scary. At least the episodes of super-fast heartbeats are understood, mostly, and still, they can be a bit unnerving when they get fast enough and last long enough.
But it's this other stuff that kills me. It's almost like a feeling that some unseen force is strangling me, smothering me from the inside, and someone let too much adrenaline loose, and I have that crawling almost rushy feeling from my chest down my arms, and up to my neck, which wouldn't feel so bad if I needed to run somewhere, fast, but since I don't, takes on a whole other sensation. I feel compelled to lie down, but just lying down won't do at this point-- I have to lie down as flat as possible, with even my head elevated hardly at all. My muscles are shaky. I was feeling like I couldn't breathe,or a similar kind of desperateness, and the panic this all incites makes me want to do anything but lie down, I feel like I have to do something, find some way to make it stop, but something tells me my body is nearing the edge, and if I don't lie down, something bad will happen, I don't know what, but it's like some kind of explosion building up...getting ready to short-circuit my body. I can't tell if it would be my heart, or my blood leaving my head and making me faint (I see spots) but it wouldn't be good, and it would definitely not feel any better than lying down flat trying to breathe and distract myself from the uncomfortable sensations...So that's what I did, but it's still scary and it takes willpower to stay calm, and as I'm dealing with it all, I have to find some way to distract myself w/this blessed laptop, although my arms feel weak and tired like I'm lifting weights.
This is the kind of stuff about my illness that I absolutely HATE. I can deal with pain. I can deal with fatigue (thought it sucks, having such an active mind). It's weird stuff like this that unnerves me, brings me close to tears, both because it's scary, and because it makes me feel so incredibly alone, and trying to fix it is rather hit or miss.
I'm guessing this is Dysautonomia, but not having been officially diagnosed(well not sure, I might HAVE been...either way I'm going to work on that next week.) I don't have anyone to treat me for it, or at least reassure me, or advise me, or put me back on the right path when I get so desperate I can't think straight. The one doctor who acknowledges the symptoms as something he sees w/his CFS patients doesn't want to deal with it...so here I am.
This has been the kind of week where the truth very grim indeed. I've spent the entire week fighting. Mostly fighting to be upright. I need to be upright not just to leave the house and go run errands, but to tidy up, change the cat litter, make breakfast, work on my computer, chat with my friends, answer e-mails, be part of the world I still am fortunate enough to have when I can't leave the house and don't know anyone for miles.
It's so hard to get every little thing done when you have to keep lying down! I managed to fold a 1/4 of my clean clothes and put them away, because yesterday something else took priority and it took me all day to do, focusing solely on that, and fighting my body's current aversion to being upright the whole time, PLUS pain, and then not being able to focus, followed by not being able to remember why I'm doing what I'm doing as I attempt to switch tasks. I did it. Woo hoo. One thing accomplished all day long, lol. I don't care, it was a victory.
I guess I don't blame people for not understanding why Fibromyalgia is so disabling for me and not for others. I'm kind of beginning to think that the people who can lead more or less normal lives just don't have all these symptoms. Like I said, if it was pain and fatigue, I could manage. It's all the other little things piled on that make it impossible for me to work more than sporadically, even from home. Memory and concentration problems, tachycardia, orthostatic hypotension...When you add those to pain and fatigue, you're pretty much screwed...
Oh well. I'm trying to stay calm. I'm going to load up on gatorade tonight, rest, watch some good shows or a movie, take my meds and supplements, some extra salt and Monday I will call a doctor I know of who I know will more than likely help me figure out what exactly my low T4 test means as well as give me a referral to a Dysautonomia specialist I researched...Wish me luck!
I hate it. It feels so scary. At least the episodes of super-fast heartbeats are understood, mostly, and still, they can be a bit unnerving when they get fast enough and last long enough.
But it's this other stuff that kills me. It's almost like a feeling that some unseen force is strangling me, smothering me from the inside, and someone let too much adrenaline loose, and I have that crawling almost rushy feeling from my chest down my arms, and up to my neck, which wouldn't feel so bad if I needed to run somewhere, fast, but since I don't, takes on a whole other sensation. I feel compelled to lie down, but just lying down won't do at this point-- I have to lie down as flat as possible, with even my head elevated hardly at all. My muscles are shaky. I was feeling like I couldn't breathe,or a similar kind of desperateness, and the panic this all incites makes me want to do anything but lie down, I feel like I have to do something, find some way to make it stop, but something tells me my body is nearing the edge, and if I don't lie down, something bad will happen, I don't know what, but it's like some kind of explosion building up...getting ready to short-circuit my body. I can't tell if it would be my heart, or my blood leaving my head and making me faint (I see spots) but it wouldn't be good, and it would definitely not feel any better than lying down flat trying to breathe and distract myself from the uncomfortable sensations...So that's what I did, but it's still scary and it takes willpower to stay calm, and as I'm dealing with it all, I have to find some way to distract myself w/this blessed laptop, although my arms feel weak and tired like I'm lifting weights.
This is the kind of stuff about my illness that I absolutely HATE. I can deal with pain. I can deal with fatigue (thought it sucks, having such an active mind). It's weird stuff like this that unnerves me, brings me close to tears, both because it's scary, and because it makes me feel so incredibly alone, and trying to fix it is rather hit or miss.
I'm guessing this is Dysautonomia, but not having been officially diagnosed(well not sure, I might HAVE been...either way I'm going to work on that next week.) I don't have anyone to treat me for it, or at least reassure me, or advise me, or put me back on the right path when I get so desperate I can't think straight. The one doctor who acknowledges the symptoms as something he sees w/his CFS patients doesn't want to deal with it...so here I am.
This has been the kind of week where the truth very grim indeed. I've spent the entire week fighting. Mostly fighting to be upright. I need to be upright not just to leave the house and go run errands, but to tidy up, change the cat litter, make breakfast, work on my computer, chat with my friends, answer e-mails, be part of the world I still am fortunate enough to have when I can't leave the house and don't know anyone for miles.
It's so hard to get every little thing done when you have to keep lying down! I managed to fold a 1/4 of my clean clothes and put them away, because yesterday something else took priority and it took me all day to do, focusing solely on that, and fighting my body's current aversion to being upright the whole time, PLUS pain, and then not being able to focus, followed by not being able to remember why I'm doing what I'm doing as I attempt to switch tasks. I did it. Woo hoo. One thing accomplished all day long, lol. I don't care, it was a victory.
I guess I don't blame people for not understanding why Fibromyalgia is so disabling for me and not for others. I'm kind of beginning to think that the people who can lead more or less normal lives just don't have all these symptoms. Like I said, if it was pain and fatigue, I could manage. It's all the other little things piled on that make it impossible for me to work more than sporadically, even from home. Memory and concentration problems, tachycardia, orthostatic hypotension...When you add those to pain and fatigue, you're pretty much screwed...
Oh well. I'm trying to stay calm. I'm going to load up on gatorade tonight, rest, watch some good shows or a movie, take my meds and supplements, some extra salt and Monday I will call a doctor I know of who I know will more than likely help me figure out what exactly my low T4 test means as well as give me a referral to a Dysautonomia specialist I researched...Wish me luck!
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