Great Link about What Your Doctor Should Include in a Report for your SSDI Case

Found this website called Survivorship from A to Z, which is awesome. It gives advice on guidelines for 3rd party Function Reports & Letters from friends & Family, as well as the one below, for doctors. (Apparently they expect them to speak Social Security Legalese, too...what's up with that? It's like being in school again, being forced to write papers in MLA or APA formats! Just more confusing perhaps!) Anyways, this kind of breaks it down. Have to show it to my doctors. Left my decision with one of mine the other day, in hopes he'd take a look at it, see how nasty they were, figuratively tearing his letter to shreds and be inspired to tell them what they want to hear, and make it just a little harder for them to deny me next time. After all, if all of us w/CFS who can't work start putting together airtight cases and they have to actually start giving us the benefits we're sick enough to receive, maybe that'll give the CDC/government/whoever a kick in the butt to start funding more resesarch!

Great article.

From:

http://www.survivorshipatoz.org/cancer/articles/what-your-doctor-should-include-in-a-report/

Physicians Statement

1/1

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.
Again, from:

http://www.survivorshipatoz.org/cancer/articles/what-your-doctor-should-include-in-a-report/

And here are a couple of more related articles:

http://www.survivorshipatoz.org/cancer/articles/physicians-statement/
http://www.survivorshipatoz.org/cancer/articles/disability-for-purposes-of-social-security-benefits/

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!

A Pain in the Neck.

Hi there. I should probably not be typing right now, but I'm bored silly and I keep stuffing my face even as I feel myself getting fatter, so I need a distraction! Sunday, even though my upper back stuff was still bugging a bit, I got frustrated, and told myself blah, it's just a a lil vacuuming. I'll live! So I vacuumed the master bedroom. Silly optimism. I soon had a burning shoulder, and felt like someone was sticking a crown of thorns into my neck on the right side. Switched to the left till I killed that one too. Last night I was in so much pain & discomfort, and nothing seemed to help; Heat, Ice, Rx-strength anti-inflammatory, hardcore muscle relaxant, Arnica Cream, Capsaicin Cream....and if I'd had no copayment I was thinking about hopping over to the ER...Haven't had pain this bad in ages! I think it's the messed up discs/pinched nerve, magnified by Fibro, because it ended up being that type of thing where I couldn't stand any pressure or even light sensation on it, plus, I think the Capsaicin really helped in the end, and that affects nerves to shut down pain soo... Finally got to sleep . Woke up better. But not for long. Within an hour I was to the point where I was doing yoga stretches, then I know it's bad! Helped a little, then I had to lie down, because even the back of the recliner was aggravating it, and it's amazing how much your arms weigh when your shoulders/back hurt just having them attached, all the little things you can do to aggravate them! Tried to watch depressing reality TV about overly fat people and overly skinny people... Yeah, I ended up making more phone calls, I couldn't take the inactivity. More hoops to jump through to get the specialist for my Endo, got referred to the wrong one again! Oh, let's not forget a shouting match with my social worker, who claimed not to have gotten my form yet, and then found it in her Inbox. That could have been that, but I made the mistake (more like right move) of asking her about the stupid Direct Deposit form I sent her 2+weeks ago! She said she had received it but knew nothing about them...and when I told her I'd assumed she did because they had sent me one a few months back, she started to get defensive so I told her, it's okay, just find out and get back to me, you can do that, right...ugh, it was just ridiculous. Long story short, I'm pretty sure it's not going to be set up for next month, but I kinda knew that, would have been okay with it if she hadn't made my heart rate shoot through the roof with her confusing shouting! Wow, scary this is starting to feel normal, but I just took a step back and thought, Wow, my world is SUCH a madhouse...Just utter madness. But what else to do but soldier on?

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.

Fabulous Article on Pacing

Although I just tried it, and all that happened when I decided to stop after 20 minutes or so to rest, is that I ended up feeling too tired to get back up! Ah well, I did clear up the living room and some of my room. But what I really, really need to do is vacuum...if I want to sleep in that master bedroom. (I sprinkled carpet powder on it a few weeks back, and if I don't vacuum it up first it's likely to make my allergies attack.) Hmm...Little Engine that Could is playing in my head...(I think I can I think I can...) While I attempt to convince my body it wants to get up, here is a great article from the amazing Adrienne Dellwo on Pacing for CFS & FM, which in truth, is a good idea. After all, that's how I got enough dishes done last night to eat breakfast AND lunch in, woohoo! That and a glass of wine...lol. While you're there, check out her articles on Stress, Acceptance, and Grieving for those with FM/CFS! I wish I could have found these articles a couple of years back!

Cool Apps for Tracking Activity & BP/HR

There are a bunch of these out there. By far one of the most impressive things I've found about Android phones! So far I have only found Heart Rate Monitors for free, and I think they work best with cameras with flash, which I do not have, but still. The hung for Blood Pressure Monitors has not been as successful, at least not free ones, but I know they exist, because my cousin, who is the one who first turned me onto these, has one. I'll find out what it is and share when I do. Buyer beware: many of the apps that look like BP Monitors are actually logs so you can enter and track your data, AFTER using another method to measure BP or Pulse. But those can be useful too:

Lifetracker - Tracks
Heart Rate Monitors for Android

I feel like I'm working as a Professional Scheduler.

I'm writing to stall on doing the dishes. No, not really. I just had some lovely, salty, Onion Soup. Sooo good. Now I'm just in my recliner, letting it digest a bit & making sure my heart's not going to go tachy before I go piss my body off by doing some dishes. Okay, I guess I should be more optimistic. I'm going to set a timer for 10 minutes, so maybe I won't get to that point. (But still get to the point where I have dishes to eat on &/or cook with!) I hate dishes these days. I didn't used to, before I got sick. I actually used to go to guy friend's houses who'd had frat parties and clean up for them, it was like a compulsion, ahh, you have company and your kitchen needs cleaning! Must fix! (Thanks Mom, ya clean freak, lol!) So letting that go has been HARD. But I feel so overwhelmed lately...Hey at least I'm getting other things done!

Now, I don't know if it's because I'm depressed and apathetic or I subconsciously don't want because I know it'll exhaust me & make my back hurt, but I haven't managed to do them in weeks. I was going to have someone come do them, but I was feeling too sick to even deal with that, and then when I felt a bit better there were other more important things to spend that cash on.

Everything is a mess. Got my files from my attorney, all over the living room, plus books I sold the shelves out from under, lol. Files I was scanning all over the office area off the living room. Dining table has all kinds of random stuff. My room, ugh. Clothes & papers. Mostly clean clothes. Folding & putting away clothes kills me, I think I finally figured out why, it has to do with holding up my arms to fold & hang. I can't keep up with it. I think I'm going to move into the Master Bedroom, AGAIN, told my Mom sorry, if you end up here, I'm staying in there this time. (I started getting comfortable TWICE and then she came to stay for a bit and left.) That room is bigger, has 3 more windows/lots of light, whereas my room is kinda cramped, and I noticed when I was sleeping in there it was easier to keep them both clean somehow (maybe it was just because the bed was made in the other room? I dunno. Less stuff ended up on the floor, therefore it was more open looking & you could get around in it. Plus, on days bed is more comfortable than the recliner, I won't be sitting in the dark, I'll be stuck in the (now) most nicely decorated room in the condo, with lots of light and airy-ness.

I sent the paperwork back to the new attorney. Woke up way too early, anxious, so I started making phone calls. At least half a dozen later, I'd booked appointments for pretty much every week in November. 2-3 of them. (Thank goodness for my phone syncing with Google Calendar!) Oh, this is going to be fun. (Not!) Worried though, because the really important ones aren't until later in the month, and my appeal is due before then, so I probably won't be able to submit any new evidence from them. Maybe I can convince the Internist, who I'm seeing sooner to send me for some of the tests I wanted to get from the specialists. Well, hey, at least all the appointments will keep me busy and around people, maybe that will help my (since I got sick and broke) yearly holiday blues.

Kinda bummed the PT won't be until mid-November, my trapz are really making themselves irritating. Maybe when I see my PCP next week, I can convince her to let me see their Chiropractor in the meantime. (She'd told me to see how PT went first, but that's over a month away, and my first appointment with her for the referral for that was another two weeks back! 6 Weeks is a bit much to be in pain nearly every day and getting worse, no?)

Figured out for sure what the whole PMS angry thing is. Ever see those commercials for PMDD? Yup, totally what I have. The most surprising thing when reading up about it, was that I'd thought it was like a PMS Depression thing, but the most apparent problem seems to be...ANGER! So right on with what I've been experiencing. I was just fuming for hours yesterday, just like the day before, but worse. I didn't think it could be that time yet, but I checked my nifty new Period & Ovulation Tracking App, which I downloaded mostly for this reason, and yup, actually, almost on the dot, a week away. I think realizing that helped with the anger a bit, but the apathy is tough. I don't feel that bad and I was thinking I should totally try and go play some pool for a couple of hours (the great thing about pool is you can sit down between shots!) and see if I could hang out with the guys I met there last week, but even though I feel slightly crazy spending so much time alone I couldn't motivate myself. I'd also contemplated starting the gym again (I don't think I went the entire month, except for the massage machine, ugh, what a waste of $20!) super slowly though, but then I realized, I'll probably work up more of a sweat tidying up here, even if I split it up, and I know that will cheer me up to have the place presentable again. So I'll push myself on that instead of socializing or the gym....

Oh, but yeah...PMDD. It was hard to see what the treatment options were. I'm already on anti-depressants so...I think I saw one study about alprazolam, but it wasn't very specific. Maybe the OB/Gyn can help with that. Oh wait, that was the one appointment I didn't get to make, figures, they referred me back to my old PCP clinic, where the receptionist transferred me to a nurse, who NEVER answers, and rarely calls back. (Which is why they are my FORMER PCP) Oyyy. Pretty sure another November appointment though. I really hope I can keep up. I got exhausted just making the appointments today, I ended up going back to sleep around noon and waking up at almost 3pm! (Because my PCP was calling me back, they messed up and wrote my female well-exam results on the wrong chart so had to check where they were supposed to write the Ultrasound for, and then also wanted to tell me they faxed my Rx for the PT, which the PT scheduler insisted they needed, and my PCP's office insisted they didn't, lol. Hoops, hoops, and more hoops!)

So that was the day, today...Guess I'll write another post to update about my appointment Wednesday, not sure I said much about that, either that or I forgot some things....

Another Day, Another Doctor!

Well, okay, so Physician's Assistant, not quite doctor, though she did need some help from the doctor in the end. More tests. More reasons to get more tests. Apparently now I get an ultrasound of my chest, too, apparently a slightly worrisome spot on one of the girls. Yeah, I'm not worried. At worst, Cancer, and a way to finally convince the government I'm sick so I can get some peace of mind and treatment for EVERYTHING (I watched my grandmother die of Cancer, and I really don't think it's all that much worse than what I've been through already) and if I don't survive that, well darn. I'd be put out of my misery with the comfort of knowing it was meant to be. I swear, not trying to be pessimistic, that's simply how I see things...

Unfortunately, since I was getting this care under one freebie program, the PA couldn't discuss the results of my tests covered by the other freebie healthcare program, so now I have to go back next week, again, for that. They did however, give me the new referral authorizations to replace the ones to the doctors that don't take my freebie health county program. A Cardiologist for the POTS, & OB/Gyn for the evil Endometriosis. (Neuro, for Spine & POTS if the Cardio doesn't help, is already booked, for over a month from now, but I'm hoping the Cardiologist will help, I checked out their website, and they do have a lady who specializes in Arrhythmias & Syncope, soooo...yay!) PT was a problem though, the "insurance" wouldn't change it, and it's simply too far for me to make it there often. Plus, the place I was trying to change it to (around the corner) wants a prescription, ugh. Hoops! Always with the hoops! I guess tomorrow I'll be on the phone with everyone myself to try and get them to help me out with that. Doctors & Lawyers & Social Workers, oh my! I did finally get rid of a couple of boxes of insulin needles that were too small to use with my Vitamin B-12, and scheduled two MORE appointments at the same clinic for those test results (Cuz it would kill them to give them to me over the phone? I know they're a non-profit, but jeez. Just tell me the results and I'll Google them, lol. Nope, they gotta get paid, and I get it kinda. Sorta. Still dumb.) and another for the counselor, whose appointment I missed after running out of gas on the freeway last week. It would be nice to have someone to call when I'm angry at life and can't think of the reasons to stick around, and to help me figure out how to keep my mother from making me feel like crap. (Ah yes, a nice visit, a gift of some fabulous slipper things for my achey feet and calves, and helping me pay part of my doctor's bill and apparently that gives her the right to irk the hell out of me. Maybe this is why I'd just prefer to keep to myself?)

So that might be helpful...If I have gas to get there, lol. Oh jeez.

Had a thought today about the tingling in my hands & feet. Maybe it's the pinched nerve/bulged discs? Looked it up, and definitely possible with the hands, or at least one of them, but not so much the feet. I think it's definitely more Dysautonomia stuff after all...maybe to do with circulation/low blood volume? My trapz were tingling like crazy the other night, mostly from sitting up watching TV while trying to setup my Mom's new phone for her, and on touching it I realized it was cold. (She'd had the heater on extra high to dry her sofa she'd just cleaned, & I was hot, actually.) Could be attributed to Fibro, too, as they've done scan on people w/FM showing low circulation in painful areas, but then we go back to the chicken or the egg conundrum...maybe the low blood volume is caused by something else (Virus? Dysautonomia? A virus that caused Dysautonomia?) and then FM is just another symptom manifestation...

Tired now. I'm thinking the Elavil experiment is not working, cuz I woke up that way...Besides pointless now, that I don't have the money to buy any CoQ10 to supplement. Might as well take it until I have that. I think that's what I shall do.

Pets, Food, & Professional Patient-ism

Home sweet, disastrously messy home! It's good to be here. Drove out to L.A. to stay with family last night so I could get to my Dr.'s appointment in time, safely, as I never know how I'm going to feel lately in the mornings, and 11am at best is a a time I'm usually okay to get started, not be at an appointment an hour away, hehe. I so did not want to pack up my stuff and drive out there, but I decided it was the safest bet. (And as hard as I tried to focus, I still left my medications behind!)

It was nice to get hugs and see the puppy, adore that little girl! Today, I was having a sad moment and a tear or two snuck out of my eyes, and somehow she knew, and started trying to lick my face! It was so crazy because she sat on my chest and even though I blocked her access to my face with my arm, she kept leaning against it, ready to lick if given the chance...and when I let up, she didn't go for my nose or mouth as usual (yeck, so not down with that, but she's a sneaky one) she went for my cheek right under my eyes and licked the tears right up...I don't know how she knew; it's not like I was sobbing.... Animals are such little blessings. I've been so missing my kitty these last weeks when I've been alone stuck in bed. If I got really desperate and couldn't take it anymore, allergies be damned, I'd pick her up and let her lie on my chest & purr, pet her & hug her. She used to love lying down in the crook of my arm, falling asleep, arching her back against me just like a person, amazing how a being we can barely even communicate with can be so comforting. How amazing it would be to get inside their heads and see how they experience life.

So I for some reason ended up taking Mom with me to my appointment. I dunno, maybe because I was half asleep, or maybe I thought it would help her understand me, or write that darn letter she's putting off for my disability appeal, or be reassured that I'm not a pill junkie and I don't happily take scrips to add to my already annoyingly long list. I think it helped a bit, although I think partly due to her interjection and my foggy brain, when asked what I usually had for breakfast all I could think of was protein & yogurt, lol! This after I've been eating mini quiches for breakfast for most of last week, hoping the protein & fat would agree with my metabolism better than carbs. My doctor ended up suggesting I have oatmeal, and I somehow didn't manage to articulate that that was one of my breakfast staples for so long I'm can hardly stand the thought of it, haha. (W/Cinnamon, butter or coconut oil, and Stevia or Brown Sugar.) No, maybe now that it's going to get cold (I think? You never know these days, with heatwaves in mid-October) I'll begin to find it appetizing again. I've actually been craving Malt-o-Meal.

The truth is, my meals, like the rest of my life, are a hot mess. A month ago it was protein shakes or yogurt with protein & hemp seeds & goji berries, a couple of weeks ago I was practically on a liquid diet, and last week was quiche. Lately it's been yogurt by itself, or cereal (Ugh, a splurge. TJ's version of Cheerios with Coconut Milk tastes like the non-marshmallow bits in Lucky Charms, yum! Plus doesn't mess with my stomach too badly.)

So anyways, the appointment went well. So out of it I kept forgetting I was there to pick up my disability form, too. Doc did take me off the anti-viral due to the anemia, but said I could cut back and taper when I told him I do get worse when I don't take it. Very scary for me. The prospect of being stuck in bed sick alone again, with how filthy this place is already definitely worries me, but must live in the present.

The appointment bummed me out for the day though. I didn't sleep well at all at Mom's due to my neck issues, forgetting meds, & bad pillows, so I guess I didn't have my armor up yet. My doctor is great, I always feel grateful for the validation he gives my illnesses, it's always a relief not to have a doctor/medical professional look at me warily or skeptically, but at the same time I feel SO angry that "the man" doesn't seem to give a damn about all the suffering we are enduring, and doesn't help people like my doctor or myself find a way to fix things and make us well again. Plus, the usual review of symptoms, like I've said, I seemed to have formed some kind of survival mechanism that allows me to negate the bad and focus on the good. Acceptance would be an improvement, I know, and I've come a LONG way there, but I still am not quite at the optimal level of acceptance, haha.

The idea of going home to be alone again with all my frustrations took me down even further, but I managed to take a tiny nap, watch a bunch of shows on the DVR, and then my favorites, some foreign dramas (thank you universe for the internet, globalization, and allowing a culturophile(?!?) like me to watch LIVE streaming TV direct from South America. Hey, my Mom pays for them on Sattelite, but it's a ripoff because they don't even have the same lineup, they pick & choose & custom tailor it for those living abroad, grrr.)

Mom tried to get me to stay, the usual craziness where she acts like it would put her out immensely to have me over for more than a day or two, which is really annoying because I genuinely just want to be at home, and then she doesn't want me to leave! I was tired and tempted, but I have a ANOTHER doctor's appointment tomorrow and can't handle another day on no decent sleep...

So yep, that's me, part-time professional patient. Curious to hear the results of the MMA & Folic Acid tests, and hoping they have some news about my referrals. Can't remember if I mentioned it, but the PA was a doll, had me my referrals before a week was up, but the ahem (!) kind folks at the county insurance plan dealio sent them back with approvals for doctors that don't even take their coverage! 4 Phone calls (and as many touch-tone receptionists) to find out I can't see any of them... I think I found a way to expedite things and get what I need, but I have to call. Calls, calls, calls. I'm grateful, oh so grateful I can manage those now at least...

Well, glorious sleep on comfy pillows calls...wish me luck!

The Dr. Melanie Show | Show on IC Tmo 10am PST

The Dr. Melanie Show | VoiceAmerica™

Adenomyosis

Finally took the time to look at my Ultrasound report...

Conclusion:

1. Adnexal abnormalities consistent with extensive endometriosis.
2. Uterine findings consistent with adenomyosis.

http://www.mayoclinic.com/health/Adenomyosis/DS00636/DSECTION=symptoms

Ha. That explains a lot! (Like why I can hardly stand to wear pants that touch my lower abdomen these days, even though I've lost weight.) Adenomyosis: A severe type of Endometriosis that affects the Uterus.
Well. The crazy thing is, as much discomfort as I've been in, and changes I've noticed, I didn't really pay attention. I probably wouldn't have bothered to mention it or ask for the ultrasound if I wasn't actually trying to prove that I was sick. I'm so used to feeling awful, I hardly notice it anymore when new things come up or get worse. I just do the best I can to cope with it and enjoy the time when I don't have to.

Will have to do more research later, tired now. But so grateful I don't want biological kids, because if I did, I think I'd be really stressed/upset right now. Reading the report from my surgery, it actually says my uterus was okay back then. But now, from the little reading I've done, doesn't sound like it!

Endometriosis

Was having some awful, sharp nerve pain down the front of my outer thigh, and endometriosis pain too, so I decided to look up Endo & Nerve pain, and found this interesting, enlightening, if a bit icky article about it.

http://healthewoman.org/2009/06/06/new-understanding-causes-of-endometriosis-offers-hope-for-new-treatment/

Yup. That's what it's from. I probably have some on my pelvic nerves, yay me! lol.

I went to the doctor for my results yesterday, and found out it's back with a vengeance. So who knows, maybe all this time what I thought was IC was really Endo? No, I definitely have IC, but maybe it's being aggravated by the Endo, who knows, maybe it's on my bladder at this point. But I think that may be the cause of all my stomach discomfort lately. Back when I had surgery I'd gotten where I couldn't eat without feeling like there wasn't enough room in there for my organs AND food, and I felt nauseous all the time, ugh. So maybe another surgery in my near future...I am back on my natural endometriosis medicines: Indole 3 Carbiole and Nattokinase...I guess I NEVER should have started eating soy again, not even for a little while, sigh. I miss my soy meat sometimes...Ah, well. Anyone else out there have Endometriosis too? Jeezus, I feel like I'm falling apart inside. How many more of my body parts/systems/organs can malfunction before they believe I'm sick? Well, off to see if the new Capsaicin cream I bought will help with that irritating pain shooting down my leg...

Natelson and Shungu Take On the CFS Brain

Natelson and Shungu Take On the CFS Brain

Prescription Drugs Deplete Vital Nutrients And Vitamins!!

Good article on Rx drugs and Vitamin depletion, check it out!

Prescription Drugs Deplete Vital Nutrients And Vitamins!!

One Hot (and cold!) Mess

Yesterday was a decent day. Good spirits. Not feeling particularly awful. (Despite persistent IC pain, which I finally knocked out with a Vicodin & some Pyridium.) But I couldn't seem to get moving. I was bored, and feeling well enough to do something, but I didn't feel like doing anything productive; I couldn't even muster the motivation to get myself to do something fun, even after taking the painkiller, which usually perks me up. It was weird.

Today, not so fortunate. I woke up tired. Lethargic. I thought if I rested my energy level would go up, but it wasn't happening. I was going to try and go out anyways to get some supplements I've been meaning to get, but I went to put my makeup on and just felt so tired. I even came up with a novel way to put it on: in bed, using my laptop camera as a mirror! Ugh, my face looked so swollen and fat! Plus the allergies or whatever that were making my eyes puffy seem to have deepened my eye wrinkles. So much for looking 10 years younger. I've been wondering when all this suffering would catch up with me that way, lol. But hey, while I wouldn't recommend it as a sole method for putting on one's makeup, the webcam method made it so I only had to stand in front of the mirror for a few seconds to get a good look and make sure I'd blended okay.

Ah. So got the makeup on. And then I started feeling really sick. (In fact, I'd been about to write a blog earlier, but just couldn't get up the energy to do it sitting up, now that I'm not going to go out, I felt the need to do SOMETHING, so I'm typing sideways from the couch, lol.)

Yup, so really tired. Heart weirdness. No, tired is too mild. EXHAUSTED. Drained. Weak. Then the stomach kicks in. And I start to get cold and feverish all at once. Bundled up and took my temperature. 97.8. Okay, so maybe I'm not crazy feeling chilly? I'm so tired. I really wanted to get out and buy some COQ10, because I was suspecting maybe I felt so tired from not taking my Elavil, so I'd better get some COQ10 in me before I have to start taking it again...but I don't think lack of deep sleep would make me so sick in all the other ways anyhow. Oh well, nothing to do now but lie here like a useless lump, hope my allergies don't kick in too. (Kitty spent the most time in here, and been filing old papers, so sometimes they kick in worse here...but the view is so much nicer, daylight & leaves of trees & pieces of sky...) Ugh, started getting too warm now feeling cold again. Chills? Hate this. Hope your day is going better...

Gastroparesis

Another thing to get checked out. I get nauseous, sick to my stomach, and generally miserable after eating a lot of the time. (ie POTS symptoms exacerbated, GERD, the lovely bloating, having to lie down after eating...kinda cramps my style anytime I actually get to go out and eat!) I haven't worried much about getting it looked into more closely, because I figured it was just the virus and kinda got the impression nothing can be done, plus I have so many symptoms a lot of times I just don't pay attention anymore, just take it day by day. I guess it's not good that lately I can't live without Ginger for the nausea, and more and more times I'm tempted to just live on liquids...Plus I may not be absorbing nutrients properly (might explain all the deficiencies and weird blood sugar/cholesterol results I've been having the past couple of years, too). Guess it's time...

http://www.mayoclinic.com/health/gastroparesis/DS00612

http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001342/

The Link Between Depression and Gastrointestinal Inflammation

Hmm...here's some food for thought...

The Link Between Depression and Gastrointestinal Inflammation

Good Stuff!

Yep, today was a good day. Not at all pain-free or symptom free, but sometimes that's not what makes a good day.

Woke up early. Had errands to run and didn't feel too bad, it didn't even stop me that it was raining! Actually, it made me want to get out faster, so I could get a free carwash! I'm a dork, I know, but it drizzled the other day, making my already dusty car all spotty, and really, really ugly. As you can imagine if you've read much, carwashes aren't generally at the top of my list of "needs". So yeah. Free car wash! Yeah!

Dropped off some videos at the video store (free Blockbuster.com trial, woo!) that I had to put off taking back for days, more important things to spend my limited energy on, so that was a relief, cuz these days they won't ship the new ones until you've returned the stores exchanges, too, boo.

Got some toilet essentials (TP Shampoo) and was a bit bummed that I didn't have the energy to wander around the store, browsing, not that I didn't try, but when I started to feel myself break out in that icky sweat I knew time was running out. Made it to the Post Office to mail some bills & endless forms, and was sputtering out of energy but made myself stop and pick up a beautiful organic salad at my favorite health food store, hoping it would repair the distaste with which my tummy was reacting to the frozen burrito I'd had for breakfast.

Seemed to help for a second, but now, the nausea was gone (probably more thanks to my friend the ginger candy) but then my stomach started gurgling with acid...Followed by plenty of churning, and then gas bubbles coming up, as if some evil, oxygen expelling bacteria had invaded my gut. (I've had Hydrogen Peroxide IVs, and the aftertaste was quite similar...Those of you with POTS or who have been hospitalized more than likely know what I'm talking about, for some odd reason, you get a slight taste in your mouth from IV fluids. )
Eventually I wisened up, took some Tagamet (both for the acid and to fight the infection obviously rearing it's nasty little head) then took some more Cordyceps, and a leftover Immune supplement from Garden of Life. It helped! I was able to eat! Thank goodness, cuz bubbly stomach SUCKS!

So maybe I overdid it, despite my best efforts. I don't know. I'm trying to take it easy. Slow & steady. Got some unexpected extra cash and am hoping I can have someone come clean. I want to so bad now that I'm better as long as I take it easy, and I can manage to tidy up a bit, and almost grabbed the vacuum a couple of times this week (my Dad left me with a super-light one he'd just bought, and I could probably manage a room or so at a time a month ago, maybe) but I managed to remind myself that I've absolutely seen in the past weeks that I'm NOT being lazy, any bit of overexertion is too much if I wanna stay upright & not in bed all day flat on my back with an elephant on my chest and stomach gurgling....

Oh! And to top off my day, I got my referrals for the specialists I'd asked for at the clinic last week, ALREADY! I really need to find my Thank You cards, because that is just amazing, so grateful to that lovely PA. Only bummer is, no Chiro, not until I try PT first (way more faith in Chiro) and the PT place is half way to the next largest metro area... Hopefully I can switch it, they're affiliated with a hospital down the street. All the others are close too. I'm going to be a busy girl, ugh. I didn't make appointments this afternoon because I want to update my Calendar first, with the 3 appointments I ALREADY have coming up, so I don't double schedule anything. Getting better, but not sure how soon I'll be up for multiple docs in one day. Hopefully the PT will be useful and help my TMJ so my jaw quits popping (gawd only knows what I look like working my jaw trying to get it to click back!) and the steadily worsening neck pain. PLEASE let them give massages! Cross your fingers for me all!
Well, lovely end to a good day, I'm desperate to fall asleep, like now! Early for ME!
Take care all, and keep the faith. Eventually your good day will come around too, if it hasn't already!

Well, I lovely

Made it! More appointments & tests, ugh.

Yesterday was tough. Back again to lying in bed, flat mostly (sitting, in bed or recliner even, still led to problems) but I made it. Had a hard time sleeping because I spent a couple of hours upright, and my heart wouldn't calm down/chest wouldn't relax, but finally got to sleep.

Had an ultrasound scheduled for today (to check and see if my Endometriosis was back or not so I could figure out what's hurting, my bladder or that) almost cancelled it yesterday, because I was scared to drive. (Actually was offered an appointment at a doctor I needed to see, but it's an hour a way, and there were just too many obstacles, including it being at 10am...yesterday I woke up groggy as heck after 11am, so attempting to drive myself that far, that early just seemed like setting myself up to get stressed and fail.) It was only 15-20 minutes away though, so I told myself it'd be okay...plus I'd already cancelled yet ANOTHER appointment for something else, so...

Still, spent the morning stressed and anxious. I was hungry, but literally afraid to eat; yesterday a glass of protein powder w/water seemed to set the POTS off! I had to eat something, so I had at least that. Finally showered and went to my appointment, stopping first to get more bubble gum electrolyte replacement! Haha. Yummy stuff.

So anyways, I got there okay, found great parking (woo!) only thing that sucked was they wanted me to have my bladder full, then they made me wait, not a good thing if you have IC. I finally told them I HAD to go to the bathroom and they came out for my appointment. Fortunately, it wasn't too bad, best of all, I got to empty my bladder! Wooo!
No, but the actual test, I'm not too sure about that...I got the feeling there were some things of interest to the technician, and she asked me how long I'd been having pain, and said it was good I got it checked. I know they can't give diagnoses though, so I didn't even bother asking. (She had a heavily accented English that made it hard enough to understand what she was saying half the time anyhow, and our conversation was difficult enough, lol.) So she told me to check with my doctor tomorrow afternoon for the results. Oh jeez. There's so much wrong with me, I can't keep up. (An alternative healer told me to get my reproductive organs checked, and I made appointments, but one gets tired, of so many appointments, and maybe I was feeling a bit self-destructive.) Well, I guess I'll find out tomorrow. Maybe it's just new Endometriosis cysts or adhesions or whatever. Fun times. Well, at least this time, if I need surgery I won't have to go back to work one week later! Nah, don't think I'm that bad yet. Last time I was really miserable, I'd never had surgery in my life and I didn't care, I just wanted it fixed, ASAP. Oh well. Tomorrow: blood tests, yay. (Not! lol!)

Natural Remedies for Deeper Sleep

Natural Remedies for Deeper Sleep

Would totally love to try that Sleep Tonight supplement, as that's been my problem much of the time, high nighttime cortisol (or was in the past, been a couple of years since I got it checked) no fun.

Yesterday...

I'm back in POTS purgatory, and it's partially my fault.

I knew I wasn't free and clear yet...this weekend was almost normal, but only as long as I stayed home resting (though I did manage to shower, and to do my hair, albeit sitting down. Nope, didn't get the grey covered, but I did make the rest look rich and shiny...) mostly.

Yeah, no dishes. I wanted to, but...dishes don't make me happy when I look in the mirror, so they didn't win the toss-up. The shower, that was absolutely necessary, lol.

Fortunately, I don't have problems with showers, at least, not yet. They actually help actually, when I can't get warm. My toes and hands were HA-PPy! I did have a scary moment though, were my head felt kind of funny. That's been happening a bit lately...First time when I was leaving the clinic last week, my head had been feeling that creepy cold feeling, and then when i went outside, I ended up sitting down halfway through the courtyard, to rest for a bit, and my forehead felt kind of numb and tingly, it was bizarre.

Today, I got some cash, so I went out to the poor person's lifesaver; the 99 cents store. Almost didn't make it that far though, because first I went to the grocery store to get some Muscle Milk, and a couple other things. I guess I browsed a little too much though? Well not really...Maybe I drank the Muscle Mlik too fast. I was hot & hungry. The 99 Cents store was practically across the street, but just the process of pulling out of my parking spot (busy shopping center) and driving there wore me out. And on the way there my head started feeling weird again. Well, I was determined, and I recovered a bit after awhile of lying back with my knees scrunched up...and I tried to keep the walking to a minimum but it's hard not to check out every aisle, you never know what they're going to have or not, and when I'm tired I tend to miss things or zone out so I might have to look a couple of times to be sure...One more quick stop across the other street, and I was on on my way home, drenched in sweat. exhausted, and feeling unwell. I remembered halfway (which isn't that far) that I forgot to pick up dinner, I'd promised to treat myself, but all I wanted to do was get home and rest. Not big on food lately anyhow.

It's kind of shocking for me to realize, WOW. I seriously am that weak again. It isn't THAT unusual that this type of outing might tire me out a bit, but...back to the drenched in sweat for no good reason thing, feeling that desperate to lie down...I guess it's a testament to how persistent I can be in my delusional insistence on forgetting the bad and focusing on the good days. Give me a few good days and I start to think maybe I was just being a big baby before. Nah. I was just worse. I'm starting to get that. The bright side is, there's always good days...eventually!

Well I went home and rested a couple hours and felt better. Couldn't decide if I should go get my dinner or not though...between having little energy, nothing appetizing, dirty dishes, wanting to lose weight, and feeling sick more than half the times I eat, I haven't been that big on food lately. But I really love Indian food, I mean ADORE it, and it's sooo cheap, and I didn't have the sense to buy anything yummy to eat at the store earlier...didn't really want to be starving at 10pm and have to figure something out, especially if I didn't feel well. So finally I went. Took the very light trash out in my cart, because I got so tired bringing the bags I had in earlier, and had water to bring in later. But I got tired just dumping the trash!

I felt worse when I got there, didn't know what to expect, either, since the place had moved to a new place, the whole hating to be stared at, and people in Indian restaurants never seem to know what to make of me...but once I stepped in and saw all the rows & rows of foreign food in the grocery section, I was just sad I couldn't stay and browse! The guy at the food counter was so smiley I felt like I had to make the effort to be lively and bubbly. Well, it was a good idea, not only did it make me feel normal for a bit, but it got me a huge portion of food I wanted that they had already put away, AND a double portion of desert, for free!!! But the effort had me sweating bullets. I got to the car (almost stopped to sit at the tables outside) and wanted to lie down but figured I should just hurry up & go. It was unusually challenging to get the car in gear AND the e-brake off for some reason, but I did it. That's when the headache started. Oy. It's been awhile since I had POTS w/headaches, usually that's only when it's really bad and my blood pressure's super low on standing and I almost pass out repeatedly. It was kind of different though, I had this pain and pressure in the middle of my upper forehead. (I think it's the same place that hurts when I get a headrush and almost pass out, feels like it's squeezing my eyes or something.) So weird, not sure I've ever had it sitting before, at least not this sharp, so I'm driving, hoping this doesn't mean I'm about to pass out...but I figured my best bet was to punch it. Home was close and I didn't even have to change lanes at that point, & all was well.

I seriously don't know how people with Dysautonomia who fully pass out do it. When I think of passing out in the shower...bad stuff can happen like that! Some of it painful and bloody, and dangerous to boot. I think if I passed out in the shower, I'd be afraid to take one not sitting for like, ever...

So anyways, ate my food. It was AMAZING. Naan & yellow & white basmati rice, okra, peas & paneer, the most amazing Samosa I've ever tasted, w/a lovely sweet/sour chutney...tart pickled veggies...I only ate half, so plenty for tomorrow's dinner, and I was absolutely stuffed but was dying for my dessert, Gulab Jamun, these amazing little pastries made out of dry milk and soaked in rosewater syrup till they're soggy...sounds weird, but trust me, it's delicious... so I had it and was even more stuffed. So of course, I'm miserable now. Tachycardia, chest pain, have to be lying down, and yup, headache's back. I was good for a bit though!

Oh. I forgot about something. I was feeling annoyed earlier because I wish I could just gulp Gatorade, but all the citric acid in it irritates my stomach (acid reflux) and IC, so no go. So at the 99 Cents Store, I happened upon Bubble Gum Pediatric Electrolyte Replacement drink. (I'd also been thinking yesterday about how much I liked Bubble Gum flavored anti-biotics as a kid, weird, I know) so I had to get some, even though it had citric acid (less than 2%) in the ingredients...I totally expected it to be gross...but it was yummy, and could barely taste the citric acid, it was really light....I'm so going back there later this week! I love my water, but it's hard to drink a lot for some reason, much less with baking soda and salt and sugar in it, ugh!

So those of you that have POTS, try it, maybe you'll like it!