Monday, September 28, 2009

Mystery Diagnosis Dysautonomia Episode: The Woman Who Kept Falling Down

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


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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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 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 :

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...

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

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 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!

Saturday, September 5, 2009

Love this Animated GIF: Get involved with Invisible Illness Week!

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, Chronic Fatigue Syndrome/Chronic Enteroviral Infection, Dysautonomia, and Endometriosis.

2. I was diagnosed with it in the year: First two in 2002

3. But I had symptoms since: Major since 2001, less severe since pre-teens.

4. The biggest adjustment I’ve had to make is: Trying to accept that I am not the person I used to be, not being able to work a regular job, and dealing with guilt.

5. Most people assume: That just because I can wear makeup, dress nice, and take a pain pill right before any social events, I must be fine the rest of the time.

6. The hardest part about mornings are: Dealing with temperature extremes and morning stiffness, needing time to let my body/blood pressure adjust to being upright.

7. My favorite medical TV show is: Grey's Anatomy, lol.

8. A gadget I couldn’t live without is: Computer. Keeps me connected when I can't get out.

9. The hardest part about nights are: Feeling better and then having to go to sleep.
10. Each day I take 10-15 pills & vitamins/supplements. (No comments, please)

11. Regarding alternative treatments I: Wish I could afford them because they really help!

12. If I had to choose between an invisible illness or visible I would choose: Visible. It's so hard to ask for help or get it when you look fine.

13. Regarding working and career: I still hope to be able to support myself one day.

14. People would be surprised to know: How much I struggle every day, and that my mind is always running even when my body's exhausted, so I have a hard time doing nothing...

15. The hardest thing to accept about my new reality has been: Not knowing how I'm going to feel, what's going to be acting up from day to day, and not being able to work. It's driven me half insane!

16. Something I never thought I could do with my illness that I did was: Build physical strength. Hopefully I can figure out how to keep it.

17. The commercials about my illness:Get on my NERVES really bad! The way they say Fibe-roe-my-AL-gee-a makes it obvious they don't have it...the CFS ones are good tho.

18. Something I really miss doing since I was diagnosed is: Being able to do anything I set my mind to. Again, WORKING. Going to concerts, too. In general, independence and self-sufficiency.

19. It was really hard to have to give up: My jobs. My apartment. Life as I knew it.

20. A new hobby I have taken up since my diagnosis is: Blogging.

21. If I could have one day of feeling normal again I would: Do something really physically demanding. Of course, then I'd have to have a couple more days cuz the next days I would barely be able to move...

22. My illness has taught me: That life isn't fair. The need for patience (which I'm still not good at.) That I must've really screwed up in my last life! lol, j/k.

23. Want to know a secret? One thing people say that gets under my skin is: "But you look so good!" I don't mind hearing I look great, it's just the BUT part.

24. But I love it when people: Are understanding, come visit me, especially when I'm stuck at home.

25. My favorite motto, scripture, quote that gets me through tough times is: That a flare won't last forever.

26. When someone is diagnosed I’d like to tell them: It's going to be hard work getting better, and staying that way, but never give up.

27. Something that has surprised me about living with an illness is: How unkind, self-involved, and judgmental people you expected better from can be. But also how amazingly kind strangers and people you didn't expect can be.

28. The nicest thing someone did for me when I wasn’t feeling well was: Help me clean my apartment, secretly pay a doctor's bill so I could refill my medication which is was miserable without.

29. I’m involved with Invisible Illness Week because: I don't look sick, but I am, and I feel like I get judged unfairly a lot.

30. The fact that you read this list makes me feel: Grateful, while at the same time, fearing rejection, lol. I feel like I'm expected to somehow be graceful and inspiring about all this, but I'm not a Lifetime Movie actress!

Thursday, September 3, 2009

Anger, Guilt, and Why having to ask for help SUCKS

I'm so mad right now. It's comforting, in a way, because my heart has been beating too fast for a couple of hours now, and getting worse, but at least if I'm angry it feels like it's supposed to be beating fast and it isn't as worrisome.

One of the things I hate about being sick, is that no one seems to understand. Even the people closest to you.

I've had a really rough couple of months. Right as I was feeling better, exercising regularly, able to push myself more, get more done, I crashed. Orthostatic Hypotension up the ying yang (low/dropping blood pressure when upright)and POTS (Postural Orthostatic Tachycardia). My heart was hammering away. Scarier still, I started getting these muscle tremors. They wouldn't settle down unless I lay down, flat, for an hour or so. Shaking & weakness, all over. Having to will my hands to do things like reach and stay closed...scary. About a week into that, I got a killer stomach flu (or flare-up of the chronic one I have hiding in my body according to a certain doc) that lasted almost two weeks. I lost 8 pounds. Once that was done with, I ended up with a UTI turned Kidney infection, which is soo not fun when you have CFS and all the other problems...Fever, pain in the lower back, front...

I got depressed as hell. I'm VERY bad at lying around doing nothing. The fact that I'd become so much more active right before made it almost unbearable to have to sit at home alone for weeks. I got so bored when I was even slightly better I took to cleaning. Then my doctor yelled at me and told me I just needed to REST.

Rest? I thought? Ha! I was so sick of looking around and seeing everything a mess. If I had money, I'd hire someone to come clean, but I don't. At that point, I could barely manage to cook. I had to sit down, my heart was pounding so hard I was getting out of breath, and I was getting dizzy just walking around, and I'd sit at the stove, stir, go lie down for a few minutes, and repeat. I managed to serve my Dad, but then was too wiped out to serve myself or eat. All I could do was lie down, close my eyes and focus on breathing. And how did that make me feel? Embarassed, and apprehensive, because my Dad was acting like nothing, which made me feel...well, how could you ignore someone obviously feeling so unwell unless you think they're faking it or something?!? I suddenly felt like a kid again, waiting to get yelled at. That's how I've been feeling a lot lately, when I need help with something. I'm afraid to ask. I told myself it was silly, but...

And tonight that's how I ended up feeling.

I'm sick. I need help with the cleaning. When I had my own apartment, it was a disaster. I hated it, but I was too busy trying to keep a roof over my head to waste time beating myself up over it. Life was beating me up enough. Towards the end, I was too tired, or in too much pain, or just too plain overwhelmed trying to study and keep up with the odd jobs I did to make ends meet, and dealing with getting through each day. My Dad lived with me for a short while until I got evicted, and I thought he understood how much help I needed. But apparently not. I've been begging him to get someone to come clean, and he keeps insisting we can do it, and if the pain was keeping me from doing it before, well, now, with all the blood pressure problems and the heart issues, I REALLY can't. I probably shouldn't. I was still going to try today though, because I'm stubborn like that. Earlier today I felt the best I've felt in weeks and I was dying to clean, but I ended up realizing I needed to go to followup with the doctor today.

Okay, I'm not going to rant and rave anymore. My point is, it just SUCKS. It was so hard for me to sit around RESTING, it almost drove me nuts. But I ended up so weak, and miserable, I realized I had no choice, but I still had to make a conscious effort at it. At relaxing. And now my Dad is yelling at me about lying around watching TV instead of cleaning just because I asked him if he could please help clean up the kitchen because there were ants. (I took care of the ones that were overrunning the living room area over the weekend, as well as the ones in my bathroom). He blew $40 taking us out to eat, and if he had that money to blow (which he probably doesn't, now that I think of it, but he did) maybe it would have been better spent using it to hire someone to clean? I've been asking him to vaccuum for 3 weeks now...we have a really old one, and it's hard for me to push around, and I have allergies, so it really shouldn't be more than a week between vacuumings, and he keeps putting it off. Sometimes I feel like I'm living with my little brother instead of my father...trying to coax him into doing something as if it was a big favor to me, and not his own house!

So, why is it SO hard for people to get that I'm sick? I guess he's in his own little world and doesn't realize that I have to lie down about a zillion times a day...I don't do it cuz I want to, you'd think he'd know how stir crazy I am and that I'm always doing something when I feel well enough...But lately I literally feel sick if I'm upright too long, and it progresses from sick, to tense and painful, vaguely anxious feeling, to muscle tremors, dizziness and a heartbeat of up to 134 (earlier this week)and breathlessness if I don't. Week before last, w/that and the kidney infection, I could barely manage to get myself something to eat, but not once was I even asked if I needed something even...

Times like those, I have to keep myself from asking what would become of me if I stayed as sick as I've been these last weeks, because I seem to be all on my own, as much as I was when I lived alone. It's just as hard to ask for help, and even if I dare, as tonight showed, it's even worse trying to get it. I just don't understand it. I never imagined this would be my life. In my worst fantasies, even if I were to get ill, there would have been people to help me. In reality, people are scarce, and indifferent. Maybe that's why I have so much guilt, and have such a hard time accepting the full gravity of my health issues and sticking to that acceptance. The objective thinker that I am figures, if no one else believes I'm that sick, it must be in my head...I have to try harder, there must be something I'm not doing something right, I'm not organized enough, I'm not determined enough...I'm just not enough...And I start to wonder if the reason I feel myself so abandoned is just that I'm somehow not worthy of anyone's love or attention or care...