Monday, December 19, 2011
Nothing much new. My heart isn't pounding as badly now that I'm back on the Beta Blocker, except for when right after I took it today, but I'm guessing that's because the Mestinon was chopped in half & released into my system more quickly then the unbroken Metoprolol pills. I did have a lot of near syncope episodes though, even after the Metoprolol should have taken effect, I think. Definitely noticed an increase in those since I started the Mestinon, although it could just be because it's close to the end of my cycle. Nasty ones, too. If they were to keep up, I think I'd have some of those nasty headaches in my future.
Well. This is going well! I was afraid it wasn't a good time to post, seeing as how I was feeling pretty cranky over not being the slightest bit sleepy. And a little bummed out that my stomach's out of sorts, because I stuffed myself with Spanokopitas a little bit ago. I tried to resist the urge to eat, but I didn't manage. I even had two, yes TWO cups of tea to try and turn off the anxiety, or quell my sweet tooth, or just put me to sleep, but nope! Well, I really didn't eat what I would call a proper dinner...I really can't decide which it was, maybe genuine hunger and then topped off with anxiety that makes me want to stuff myself silly.
Nothing much new. Well, I am doing a lot better with the holidays this year! Maybe because I've been so busy, maybe the peace of having the place to myself, maybe I'm just plain used to it not being a big deal and being broke at this point? I am about $200 in the hole this month, so that sucks, but I'm not all that worried about it. The only difference it really makes is, I feel even less inclined to make the effort to drive to L.A. for Christmas with my Mom & brother. And yes, I'm still annoyed that we can't have it here. I started decorating very nicely; managed to find where some of the decorations were stored.
The foster kitties are quite nice to have around. (Except when they start making too much noise at night, ahem, kitties, you boys had all day to play, to bed!) My allergies aren't doing nearly as bad as I'd feared.
So nice to have time to rest and not forcing myself through the motions like a zombie, trying to get to all my appointments. Last week was light, and this weekend I was just plain lazy, although I did find myself sending a fax to my attorney with some new medical records I got from a previous Primary Care Physician (For free! Yay!) as well as some input from my brother about my health and how it affects my day to day life, and Foreclosure notices for this place. Yup, they're all trying to give me the boot now. I won't budge till I have to, hopefully I'll get till Spring or Summer, so if I have to sleep in my car, I won't be freezing. I guess I'd better start finding out more about transitional housing eventually. I know there's something like that at the place where I go to the clinic, a mission, but not sure how that all works. But then, who knows what the future will bring, I'll cross that bridge when I get a little closer to it. Does that sound a bit Zen? Maybe so, I don't know why, but lately I feel quite Zen. Except when I wake up super-anxious in the mornings, but as far as the overall picture...OHHHHHMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM.
Monday, December 12, 2011
A few days on Mestinon now. BP is up actually, but heartrate is too. Somehow, even 144 didn't seem as bad as 120 usually feels. Maybe heart is pumping faster, but w/less effort due to Mestinon's effect on muscles? Face has color back, but toes and fingers feel kinda swollen. A little breathless, too, but I think it's the heartrate. Ran out of Metoprolol, so getting back on it may take care of that.
Saturday, December 10, 2011
Disautonomia (This one has pics at the bottom of ways to push blood up or keep it from pooling in one's extremities, the last one kinda demonstrates how I've managed to do some of the dishes lately, lol!)
Here's a second one:
Now if my family members and Spanish speaking friends would just read this, lol. Maybe then they'd stop assuming I'm lazy, crazy, anti-social, or a pill-popper. (It's like seriously? Did you not know me at all before I got sick?) Okay, well maybe a little crazy, but aren't we all? (I didn't do well on a trip to South America to visit family, which as one of the articles points out, makes sense due to the elevation making things worse.) Some of my friends on the other hand, decided not to come to my birthday party, which I suspect is because I've missed so many of their parties the last couple of years that I've been sicker, but then, they've also made it clear that they don't believe I'm sick so...Ah well, what are you gonna do? Just keep on keepin' on...and make the best of the little things. Even if they are little tiny things. :)
Friday, December 9, 2011
So yes. New Cardiologist. She's pretty young, maybe even younger than I, but very professional. She surprised me, having the Medical Assistant take my blood pressure standing, sitting, and lying, before she even came in. Had a quick EKG, which was fine. She then gave her my records, which just took her a second to read (that always surprises me, ha!) and we went over everything. (Apparently she had my records sent from the clinic in her computer already! LOVE computerized offices!) She agreed with me the Cardiologist who did the Tilt Table Test was off in his interpretation and that it WAS in fact positive. (Victory! Ha-ha.)
Anyways, so she put me on Mestinon (what a relief, I'd half forgotten, but that was the drug I was looking at that sounded best, better known for treating Myasthenia Gravis; I'd been afraid she'd want me to take steroid-type medications. She wants me to get compression stockings, which she said should help the neuropathy in my feet and help keep blood from pooling. She wants me to stick to my vegetarian diet, as she says that's the best for POTS w/gastro symptoms, eating meat would likely make it worse (Yay! I wanted to start eating meat again, but I just couldn't!) Slow, graded exercise, ideally recumbent bike starting at 10 minutes, which was my plan, but she said that without knowing that, and a couple of other minor things. (Staying on my high salt diet, drinking at least 64 ozs of water daily, magnesium to help with symptoms during PMS...) She believes that the type of POTS I have is only temporary, and that with some work I can improve in a year or so. Which would be awesome, but not going to get my hopes up too much...
So started on the Mestinon last night...Not sure of any changes yet, except that my lips are a bit tingly, and my face is a bit flushed, which I'd read could be a side effect, but I kind of like, cuz I've been a bit pale lately and every blush I use seems to make me break out, so now I don't have to decide between blush or breakouts, haha. Now if it'll just help with that muscle weakness I've been feeling lately (can barely hold myself up sometimes!) and help my blood pressure stay up & heart rate normal, wow, that would be amazing. Stockings, I have to see if I can get those covered, although I found some online for under $20, I'm already going without a ton of stuff I need, Rx's, supplements, car registration...but hopefully I'll find the cash for that soon. So we shall see how it goes!
Thursday, December 8, 2011
When she finally tried to tell me that I felt like I needed to sleep because I was depressed (which I totally have NOT been lately! Upset, frustrated, overwhelmed,at moments, maybe a day or so, but depressed, no.) I finally had a little tirade of my own. Ha, writing this I'm really fully realizing the nerve of her trying to tell me I don't know my own body! Yes, I know my health could be managed better, but I've been working my butt off on it lately, and if I'm excruciatingly tired after days of not being able to rest properly or even get enough sleep, it's because I need to rest, my body, and my psyche! It takes a lot of will power to keep going when you're feeling that bad and it wears you out mentally, too! Yes, I know feeling tired all the time CAN BE a symptom of depression, but I also know all too well what depression feels like. (And I always got out of bed anyhow.)
Oh my, this is turning into a rant, isn't it? Well, long story short, I ended up cutting her short a bit after I'd explained to her 3-4 times that I understood PT required my effort to work, that I'd put so much thought into whether I should be even trying it right now with all I have going on that I even spoke to my therapist about it yesterday, and assured her that because I finally have a break from 2-3 appointments a week (sometimes a day!) and all kinds of other craziness, I would now be able to focus my full attention and make the effort and reap the benefits. The reason is, that she kept trying to tell me about some guy my age who had been in an accident but did his exercises and saw rapid improvement despite having to work 2 full-time jobs...which is great for him, and yes, I know, PT can do wonders if you work at it...that's why I'm going, and why I'm telling her I plan to start taking advantage of it. See, anyone who's not sick reading this will probably do like my aunt, say I'm exaggerating, but being this chronically ill IS like working two jobs! And yes, I HAVE worked two jobs before, so I do know what that is really like. But just getting from day to day, taking care of my basic needs, stuff that most people take for granted, for me, that's as exhausting as a full-time job. Then add the marathon of appointments, followup phone calls with lawyers, doctors, faxes sent & received, social services issues, more faxes sent & received, prescriptions to pick up, getting records together that pertain to each specialist, figuring out how to get money for gas to get everywhere, how to stretch my budget, plan my days, micromanage myself so I can keep on doing it even if my brain fails me (thank goodness for electronic calendars and lists!) and managing all my symptoms (nausea, upset stomach, tachycardia, low bp, anemia, numb/tingly and cold extremities, near-blackouts, spells of being freezing & not being able to warm up, night sweats, allergies, pain, weakness, ovarian cysts twisting, irritated bladder, need I go on?)Add in some holidays, new foster kitties & making the house presentable, and mine and my brother's birthday (I had to get up early on mine to sell a piece of furniture I'd put on Craigslist, and then spent the afternoon trying to convince myself to go to my brother's to celebrate BOTH our birthdays and being unsuccessful until I finally gave in and took a nap...and went.)Now try stuffing random things you have to do everyday anyway in all the little cracks of free time...Like I finally told Ms. PT, I'm so exhausted from all that I've had going on and because my body is asking me for rest, my mind is so tired of pushing it, that if I push myself any harder I'll be on the verge of a nervous breakdown, lol. I then reminded her that I do have chronic infections taxing my body and am coming off medications to manage them, too...And then she tells me I need to stop thinking of myself as sick. Which I understand, am already aware of, and I actually am doing better at, but when I'm at health appointment having to explain myself it kind of does come into play... (I mean, seriously, if I sat around thinking about how sick I am, would I really have even gotten through the last few weeks?) Although it's been exhausting, and I'm glad I get a much needed break, it's been wonderful in a way, to feel like I'm living again, doing all this stuff, so despite the fact that I've been dealing with medical records & Disability cases & specialists galore, I've mostly been busy just living...no time to dwell on the bad or cry about the world collapsing around me, or people being mean, or anything, really. If I did, I simply wouldn't make it. Even when I'm busy keeping my symptoms in check, I hardly notice, it's become almost automatic. If I'm nauseous, I take some ginger. And go about my business. If it doesn't go away when I realize it's been awhile, I take some more, or try another remedy. Then continue. If I'm feeling weak, tired, cold, in too much pain, or my back or feet are telling me, I rest. Then get up & continue. I don't sit around thinking Oh no, OMG this sucks, I hate my life, I'm so nauseous/sick/blah. I mean, I probably actually took it to an extreme, which is why I stopped trying to get help, so I could think about it less, lol, and why I'm having to see all these docs now as part of taking care of business. (Well, that and it's really damn complicated and exhausting, especially when you have no insurance and have to beg for every little bit of help.) Now that may be hard to believe after reading this rant, that I don't focus on my illness, but...well, this is my place for that.
Alright. No more dwelling on this negative stuff. Whatever. I'll do my PT exercises from now on, I shall get my rest & be ready to go, and if Ms. PT tries to lecture me again, I will cut her off again, cuz I'm over it. I know I'm doing my best, and also that my best will be better next week. My next post (oops, did I say that before?) is about the awesome cardiologist I found who can and is actually going to try and treat my POTS! How's that for an awesome birthday gift? I'm so grateful that this little marathon of doctor's visits has been fruitful, so very grateful for all of my docs, and yes, even Ms. PT, because I know she means well, that tiny little dynamo.
Tuesday, November 29, 2011
CHRONICLES OF FIBROMYALGIA: The Carpet Cleaners: I have been amazingly forthright with you all about my complete lack of housekeeping skills. Or more specifically, my complete lack of an in...
Monday, November 28, 2011
My stomach, thankfully, listened to me and behaved, at least for a couple of days. I think what's helped is that I've started taking a Cat's Claw supplement. Not one of the ones I had recommended to me, way too expensive, at least at the doses recommended on the bottles, just a generic one my Mom got me at the health store for under ten bucks. Their store brand is usually pretty good, so we figured, why not? I think I started out at too high a dose, but hard to say, because that's the dose I was taking at first, then I backed off/forgot to take it for a day and got worse, so I chose to knock it down a capsule, and so far so good, and thank goodness, because the acid reflux and nausea especially, were getting awful. (Ginger wasn't helping, nothing was; and stomach pain to boot.) So the tapering off the anti-viral is going way, way better than I'd expected. I'm down to half a tab daily.
Tomorrow, it's off to the cardiologist. Fingers crossed that she can do something to help me. I had the luxury of choosing from an entire group of cardiologists at this medical group, and her bio mentioned orthostatic hypotension and tachycardia. Hopefully, with her support, I can get them to allow the autonomic testing.
I am SO glad I've had a little bit of a break from all the crazy doctor appointments this past week. This week doesn't seem so bad, especially since two of my 3 appointments are close by. The follow-up with my PCP is the only far one, but that's okay.
Physical therapy has been interesting, though I've only gone once so far besides the evaluation. The Therapist continues to impress me. Although I still think she may be a bit gung-ho in wanting me to start with 20 minutes of cardio, pending the cardiologist's approval. The exercises she gave me were super-easy...except they're not for me, and every time I do them it seems to set off the pain. It really sucks not going more than once a week, especially at the start, because it's hard to get the hang of doing them right. (I'm terribly uncoordinated, couldn't memorize a dance routine to save my life.) But I think she said that after the cardiologist's input, I can ramp it up to two. She also said that my muscle weakness was equivalent to an 80 year old's (so there, relative who practically called me a liar for saying that I feel like an 80 year old sometimes) but that she has seen someone my age that weak maybe weaker, before, once.
So, all is basically well for now. I've volunteered to foster a couple of cats, I just couldn't take the solitude anymore, and I made the mistake of watching one too many cute cat videos, haha. I wasn't keen on having to clean litter again, but I'll manage. They are young & playful and will be fun to have around I think. I figure, my allergies haven't completely gone away since mine's been gone, so hopefully it won't be that much worse. So I'm excited! I'm not having company over on my birthday after all, I hadn't realized it was my brother's 30th birthday, so I had to forgive him for scheduling his birthday celebrations on my actual birthday, but I'm still getting the place cleaned, a great birthday present to myself! I can't afford it, but I don't care! Like my sometimes illogical mother is fond of saying when she's going to spend money on something she can't afford, "I deserve it!". Well I do, right? Okay, well I'd better go to sleep before I start thinking that I idea through. It's not like I'll have enough money for everything I need anyhow, no matter what I spend it on I'll be short. Oy. Story of my life! Okay, well now I'm going to go meditate on abundance!
Thursday, November 24, 2011
I'm really glad I did it that way, because for some reason I only got five hours sleep, and have woken up with a grumbly tummy. Not hungry grumbly, more like infection is having a party in here grumbly. Not surprising I guess, since I spent most of yesterday fighting off nausea and general stomach yuckiness. Oh well, I will whip out my arsenal and make it settle down by dinner time, it will not keep me away from my Thanksgiving Dinner darnit!
So what am I grateful for this year? A lot surprisingly. For one, I'm thankful to be in the comfort of my own home for once, and to have my entire arsenal for stomach upset, pain, etc. at my disposal, and to not have to wear myself out more packing & driving & trying to cook in a foreign kitchen and find a place to lie down or worry about what anyone thinks. It's definitely enough to make up for spending it alone, surprisingly. It's been a tumultuous few months, and a marathon of doctor's appointments lately, so I'm grateful that's over & I made it through!
I'm grateful to have a place to enjoy the comforts of home in, because I know everyone is not so lucky, and I don't know what the future will bring.
I'm grateful that I'm not having Tachycardia today so far, and haven't had any bad, bad attacks lately, with the breathlessness & chest crushing or neck coking sensations, or any of that especially nasty stuff.
I'm grateful that I managed to get a nice little Thanksgiving meal together for myself, sweet potato casserole-less, but I've got PUMPKIN CHEESECAKE, so that's okay!
I'm grateful that I'm getting sleepy and after I write this I am free to go back to sleep and stay that way all day if I darn well please.
I'm grateful for the doctors that do their best to help me manage my conditions, and to live in this country with as many resources we have for those in need, because I know it could be much worse!
I"m grateful for my recliner and the gorgeous view out the window from it, and for free cable TV, and cheap Internet, and all the gadgets it allows me to use! (Ha! Couldn't pay my cell phone bill this month, but imagine my delight to find out the Wifi still connects me to all my apps on it so I can periodically check things even when the pain of being on a computer is too much and keep myself entertained and connected to the outside world!
I am really grateful I live in California and not some cold snowy place that would make my body ache, and that I have a temperature-controlled environment to keep my body thermostat issues at bay.
I'm grateful for my car, even though it's giving me signs it's ready for some work, and for the guys who pushed it to the gas station the other day when I ran out of gas because the gas light never went on.
I'm grateful for all the special people in my life, loved ones, near & far, and the memories we share.
I'm grateful for the new people I have met lately who have brought a little joy & normalcy back into my life.
I'm grateful that I've found so many things to be grateful for, because I wasn't feeling it just a few days ago!
Last but not least, I am grateful for this bed I'm about to sink back into and hopefully get some delicious sleep in!
Happy Thanksgiving to you all, and if you have POTS, try not to overeat, and if you do, may you have a comfy place to rest and minimal discomfort!
Tuesday, November 22, 2011
Monday, November 21, 2011
Tuesday, November 15, 2011
Sunday, November 13, 2011
Vitamin B12 affects cells that form the outer surface of the body and line inner passageways (epithelial cells). Therefore, a lack of B12 may cause a falsely abnormal Pap smear."
Friday, November 11, 2011
Thursday, November 10, 2011
Monday, November 7, 2011
So I don't know if keeping up with all the doctor's appts is wearing me out, or if it's tapering off the medicine that was causing the anemia, or the sudden shift from summer to full-on winter weather or some of all of the above but it's getting old! I'm trying to spread things out and simplify wherever I can and keep organized but....I'm getting overwhelmed! On the days I have doctor's appointments especially (I usually try & run an errand or two while I'm out) I am just desperate to get home and get in bed! My kitchen actually smells from the dishes not being done and I got tired just now doing one so I could have bowl of soup...cuz I'm suddenly freezing, and somehow spending $40 at the store didn't get me anything microwaveable and slightly healthy. I just microwaved it, reclined to write this in my chair while it was heating up, and now I don't even wanna eat it, I just want to go lie down and take a nap. Maybe I will save it for later and take a nap, call it a day. After all, I WAS thinking earlier how I can't wait for it to be time for bed so I can go to sleep and forget about getting anything else done...Maybe that's the answer? I have a doctor's appointment early tmo afternoon, but I can probably find something to wear amongst the clothes I still haven't put away from last time I did laundry, lol. Sigh...Strangely I'm calm lately though. Thank goodness for small favors...
But anyways, yeah, what do you guys do when you feel like a soggy vegetable?
Thursday, November 3, 2011
Monday, October 24, 2011
In addition to obtaining your medical records, Disability Determination Services (DDS) will sometimes send a questionnaire to one or more of your doctors for completion.
Since the forms are created by each state, there is no standard. In general, the forms include questions about restrictions in your ability to perform work-related tasks, social functioning, and activities in daily living (transportation, household chores, personal hygiene) -- all information that you also provide.
If you know one is coming, alert the doctor ahead of time. Ask all your medical providers to contact you should they receive an inquiry from Social Security.
Some doctors will permit your input in the completion of the forms.
- Remind the doctor of the definition of disability used by Social Security (instead of their own idea of what a disability may be). See Disability For Purposes of Social Security Benefits.
- Ask the doctor to complete the statement focusing on both:
- How your symptoms keep you from working.
- The affects on your daily living.
If your doctor will agree to it, review the statement before it is sent to DDS. There may be symptoms the doctor didn't include or affects on your work or daily life that aren't included.
See What Your Doctor Should Include In A Report for advice on what should be included in the report and how to get it.
NOTE: If a nurse practitioner is your medical provider, try to get the report signed by a doctor.
And here are a couple of more related articles:
I swear, if it drives me to my deathbed, I am going to win these benefits! I will beg for letters, reports, beg borrow or steal to get all my records complete to submit, whatever! I'm getting beyond over jumping through hoops, so it's do or die!
Just so long as this darn pain eases up, I'd forgotten it could be this bad. It totally makes my anxiety go up, especially when nothing is working. Usually it's just aches & pains, malaise, but somehow that's not the same as full-on pain. Tempting to try the gym tomorrow, because that same anxiety had me eat half a box of graham crackers...plus I can just do the recumbent bike and maybe that will ease the tension & help? Of course, the idea was to start back at a few minutes, so as not to piss off my heart/nervous system so not sure how well that would suit both purposes, ugh. Hate having to think about every little thing. Alrighty, my hands & arms are prickling, so I guess it's time to go for now.
Saturday, October 22, 2011
Lifetracker - Tracks
Heart Rate Monitors for Android