Disqus - Latest Comments for sasprea

Re: future developments

tinglyfeeling — Mon, 22 Aug 2011 17:18:34 -0000

Hey there. So sorry to hear about your diagnosis. It is A LOT to process. I think I'm still in denial, 3+ years later.

I hope your symptoms are manageable and that you're able to keep up with life the way you want to live it. Feel free to pop in here now and then and leave a comment to let me know how you're doing. xo

Re: Stability

tinglyfeeling — Mon, 25 Apr 2011 00:40:43 -0000

Aaras - Thank you for your kind comment! I've had this blog for a couple of years (or maybe 3? ack) and I've been kind of a slacker about updating it on a regular basis. I'm glad to hear that someone gets something valuable out of my ramblings. That is incredibly encouraging. I'll do my best to keep the posts coming, and please do talk about yourself in the comments! I don't want this blog to be all about me.

I hope you get good news after your MRI and that your symptoms are due to something minor and treatable. Feel free to share the outcome here if you're comfortable with that.

Best of luck...
xo
tingly feeling

Re: Stability

tinglyfeeling — Fri, 22 Apr 2011 01:53:46 -0000

That sounds really frustrating--it seems like it should be pretty basic knowledge at this point that this disease is a) unpredictable, b) different for everyone and c) has no cure. Maybe you can hand out wallet-sized cards that sum that up? ;-)

I had a cousin who recently died from MS-related complications (since we can't die from it directly, right?), so one side of my family is very aware of MS--but just from the perspective of his experience. So I get "Honey, how are you feeling? You look so good! [cheek squeeze]" and lots of furrowed brows expressing concern. Because to them, it's a lot worse. Which scares me because I don't like to think about how bad it can get.

So the flaky on-again/off-again symptoms, while "normal," really bother me when they come on so suddenly and I can't point to any one reason. Am I having a relapse? Are these new sensations going to stick around? Ack!

I feel better today, and hope I'll feel even better tomorrow. Only time will tell, right?

Thanks for reading and for your comment. xo

Take care,
TF

Re: Welcome to Overshare Central

tinglyfeeling — Wed, 20 Apr 2011 15:13:09 -0000

hi. sorry about your diagnosis (and my delayed response to your comment).

it's a really hard thing to tell people about. i called my best friend before i called my parents because she'd been so pragmatic and steady throughout the whole process of doctors' visits and tests that it just seemed easier to tell her.

my parents were a lot harder, for sure. when i told my mom over the phone and she relayed the info to my dad, i heard him exclaim, "No!" in the background. i hated having to put them through that. but there it was. of course, i don't know how they really felt about it, other than devastated. we don't really talk about it much. they have two daughters with this disease now and must have been wondering how in the hell this happened. i think my mom felt responsible for a while because of her northern-european heritage.

anyway, at this point, rather than dwelling on the how and the why, we must move on with our lives as best as we can--for ourselves and for the people we love.

my best to you,
tingly feeling

Re: MS Fatigue 101

tinglyfeeling — Wed, 20 Apr 2011 15:04:05 -0000

i haven't looked into secondary meds at all, preferring to keep things simple with just avonex (not that any part of taking drugs is really simple).

i've talked briefly with my doctor(s) about anti-depressants, but my dips in mood are so fleeting that they don't recommend i take those.

but! adderall is something i have heard about from my MS support group. i'll ask them about their experiences with it at our next meeting, which is tonight!

thanks for the comment and the advice!

droopily yours,
tingly feeling

;-)

Re: http://betterleftunsaid7.tumblr.com/post/3292081579

tinglyfeeling — Wed, 23 Feb 2011 14:25:27 -0000

Yeah, this kind of fatigue should totally be illegal. I've definitely had days where I just stare at the wall and wonder why I won't just get up and do something. It takes so much effort to make myself move. I guess that's the depression side of fatigue? I dunno. It blows.

Sorry you've been denied benefits. My sister (Dx w/RR MS in 2000) also suffers from fatigue and was approved for benefits even though she doesn't "look" disabled. But girl cannot hold a steady job (or remember family birthdays and anniversaries!) to save her life. I'm thankfully still able to work. I sometimes wonder for how long, though.

Best to you,

TinglyFeeling

Re: goin’ to shot-town USA

tinglyfeeling — Sun, 29 Aug 2010 15:58:47 -0000

Hi Evelyn! Sorry about your diagnosis. I hope you're adjusting okay since getting that news (apologies for the month-long delay in replying).

The Avonex injection process has only gotten easier for me since I wrote this post a year ago. I really just go for it now. I'm still not a huge fan of the needle, but when weighed against other things I could be doing, poking myself once a week isn't so bad.

Best of luck to you with processing everything you'll be dealing with now. Please stay in touch and let me know how you're doing. I'm on Twitter @tinglyfeeling.

Take care. :-)

Re: my so-called double life

tinglyfeeling — Thu, 25 Mar 2010 17:45:27 -0000

Thank you. My mom doesn't get that distinction. She tried saying that MS is a part of who I am, to which I responded: BULLSHIT. It is something I have, yes, but it is not ME. Eff that.

She also said she thought the dude should know about my MS so he has all the information and can choose whether he wants to keep seeing me--again, I said, BULLSHIT. My MS--at least at this stage--shouldn't be a factor in whether or not someone wants to date me, unless they're going to be a jerk about it.

Dude. Parents just don't understand.

Re: my so-called double life

tinglyfeeling — Wed, 24 Mar 2010 20:19:39 -0000

heh. i'm in disguise!

anyway, i'll either figure out how and when to tell him, or it will come to a point where i have no choice but to spill it. i hope it's the former situation, rather than the latter. it'll be awkward, either way.

it doesn't help matters that my symptoms have been acting up lately--slower right leg, mucho fatigue--and i can't/won't talk about it with him. ech.

Re: w00t #hcr

tinglyfeeling — Mon, 22 Mar 2010 16:59:13 -0000

word to the up, sister. i just read your response to your dad on facebook. i'm glad he listened to you, but i really wish he'd *understand* what you are saying enough to realize that health care and access to insurance is essential for everyone and that the passage of this bill benefits us all in the long-run.

(also, your mom is having colon/intestinal issues right now and he still doesn't think they need health insurance??? WTF??!)

Re: w00t #hcr

tinglyfeeling — Mon, 22 Mar 2010 15:47:00 -0000

Yeah, we'll keep fighting. A public option is a must--and abortion is legal and should be covered by insurance. Period.

After the HCR decision came down last night, I received two emails. One from the Washington State Dems and one from NARAL Pro-choice America. The WSD email was all "WHOOOO! This is change we can believe in!! All our dreams have come true!!," while the message from NARAL's Nancy Keenan was a lot more somber. Here's part of her message:

"I am extremely disappointed to tell you that the final package includes the insulting, unworkable Nelson restriction on abortion coverage in the new system...

...This unacceptable bureaucratic stigmatization could cause insurance carriers to stop covering abortion care. This would represent a major setback, given that more than 85 percent of private plans cover this care for women today.

Despite this totally unacceptable anti-choice provision, reform will bring more than 30 million Americans into a system that includes affordable family-planning services and maternity care for women. It also outlaws some discriminatory insurance-industry practices that make health care more expensive for women. Improving women’s access to birth control and prenatal care and making reproductive-health care more affordable are also at the core of our mission...."

So, they're looking at the silver lining, but this is a pretty major setback for women's reproductive rights. I'll forward you the whole message if you'd like.

Thanks for reading, button. xo

Re: slip into our skin

tinglyfeeling — Fri, 26 Feb 2010 14:40:16 -0000

Yeah, I want to show it to everyone I know! The flippers/high heels cracked me up. I can't wait to see people doing that at Pacific Place. Do you think this will come to PDX?

Re: the incredible shrinking woman

tinglyfeeling — Wed, 17 Feb 2010 18:22:07 -0000

hmmmm. don't think it's diabetes. i'm sure my doctor would have checked for that if she'd thought it was a possibility. my xray and lab results came back normal, so for now, i'm chalking it up to other lifestyle changes and stress. and maybe eating a little too much like a bird. :-)

thanks for your comment!

Re: the incredible shrinking woman

tinglyfeeling — Wed, 17 Feb 2010 18:20:26 -0000

it's important that you feel you're making the right choices for you. no one should--or can--tell you the right way to treat this disease, anyway. we're all just grasping at straws. only you can know what feels right.

and the doctor called and said that my chest xray and lab results were normal--so no lymphoma and no thyroid weirdness. whoo! she said to just monitor my weight and try to eat more. ;-)

Re: the incredible shrinking woman

tinglyfeeling — Wed, 17 Feb 2010 14:08:56 -0000

it's good you're making an effort to eat (and such yummy-sounding foods!). it's not quite lunch time for me, but i think i might have to go get something soon--especially since "breakfast" was just coffee again this morning. xo!

Re: the incredible shrinking woman

tinglyfeeling — Wed, 17 Feb 2010 13:42:48 -0000

oatmeal with honey sounds delicious! i hope you enjoyed it. the building where i work has a cafe that serves made-to-order breakfast until 10 and has plenty of snacking options. i need to take advantage of that more.

and actually, i've heard that eating breakfast speeds up your metabolism. when you don't eat breakfast, your body goes into starvation mode and your metabolism slows down to try to store up food energy. so THAT's why it's the most important meal of the day. :-)

man, now i want oatmeal....

Re: the incredible shrinking woman

tinglyfeeling — Wed, 17 Feb 2010 13:38:46 -0000

i don't even like to take OTC cold meds, so yeah, taking an interferon is a big step for me. but it's one i felt i had to take. are you not taking MS drugs at all then?

i get my results today--i think the doctor's office called while i was in a meeting earlier, but they didn't leave a message. i wish they'd just leave a message so i don't have to think about this anymore. gah.

Re: the incredible shrinking woman

tinglyfeeling — Tue, 16 Feb 2010 19:46:18 -0000

Okay, so when I was Dx'd and it was recommended that I choose a drug therapy, I was like, "Hells yes, let's get this drug party started." Better to be safe than sorry, right? I realize now that there's so much doctors don't explain to us about long-term side effects of these treatments. It's scary.

But I saw my doctor today and while she decided to check my thyroid (which tested normal in August), she said she didn't think that was the issue because I didn't seem to be exhibiting other symptoms of hyperthyroidism. She made me get a chest x-ray to check for Lymphoma, too, so I've got those results to look forward to tomorrow.... w00t.

So why is Avonex on your most-feared list?

Re: the incredible shrinking woman

tinglyfeeling — Mon, 15 Feb 2010 21:48:15 -0000

I hadn't thought about MS making you lose your appetite--maybe the depression, but stomach numbness? That is just too cruel. Especially considering your line of work--being a chef is an art. If you don't care enough to eat your own creations.... ech. Sorry. That sucks.

I think I might be eating smaller portions, but I am eating at the same frequency as before my diagnosis. I think. I've always been a two-meals-a-day (coffee is breakfast on weekdays) girl, except on weekends, when I'll have actual breakfast. Brunch is my favorite meal. And I do feel hunger still. I'm hungry right now, in fact, and I ate a late lunch.

A regimented diet plan sounds like a good idea so you can make sure you're eating as much as you need to, since hunger doesn't seem to be an effective trigger anymore. Have you seen a nutritionist? I don't think I'd be able to come up with a balanced meal plan on my own. I'm clearly not disciplined enough now to even follow doctor's orders and buy a freaking bathroom scale.

Let me know what you decide to do to curb your weight loss. It's definitely something you want to check out if you're losing a little every day.

Thanks for reading and commenting... take care.
xo

Re: new sensations

tinglyfeeling — Sun, 14 Feb 2010 21:20:24 -0000

Hey, thanks for the comment! Hot pokers sounds really awful--the sensation I was feeling was warm, but not burning. I haven't felt it for a couple weeks, but tomorrow is a new day. heh.

I also sometimes experience numbness on the right side of my torso, but it feels like it's *on the inside.* Sounds weird, I know, but I swear it feels internal. Ech. This is a strange disease we're living with, my friend.

Thanks for reading. :-)

Re: new sensations

tinglyfeeling — Wed, 03 Feb 2010 03:38:25 -0000

Cool--thanks! Have you used this site to keep track of your MS symptoms? Do they allow for customization or the creation of categories to group symptoms, or do they just provide you with a checklist... aaaah, I should just look at it, I suppose. ;-) Thanks!

Re: new sensations

tinglyfeeling — Wed, 03 Feb 2010 01:53:25 -0000

Thanks, Carla. Do you keep a daily MS symptoms/WTF journal? Where do you write it--on your computer or in an actual notebook? That's sort of what Twitter was supposed to be about for me, but I spend so much time internetting as my non-MS self that I sometimes neglect this space--and I don't want to talk about my symptoms every day. Anyway, while I don't keep a daily journal, I do record how I felt during the week & what's going on with me in the journal I keep for my weekly shots. So there's that, at least. It will be interesting to review it in a couple years. heh.

As for the new-ish symptoms, I've been really busy at work lately and I wonder if the added stress might have something to do with the leg acting up. Also, the weather has been unseasonably balmy. There I go, looking for causes for the effects again, even though I know I shouldn't.... :-)

Re: of hamsters and hookworms

tinglyfeeling — Wed, 03 Feb 2010 01:39:42 -0000

Wow--really? This is exciting news. How did you get signed up for #CCSVI? And why Poland? Must. Google. Ah: http://csvi-ms.net/en/categ.... Who's your doctor there? I look forward to hearing more about your experiences leading up to and after the treatment. xo!

Re: of hamsters and hookworms

tinglyfeeling — Sat, 30 Jan 2010 18:56:03 -0000

ha! yeah. It does sound rather unappetizing. Still, it's pretty amazing what researchers will do to try to stop MS.

So are you taking your side of hamster ovary with Avonex or Rebif? :-)

Re: happy new year

tinglyfeeling — Sun, 10 Jan 2010 18:17:53 -0000

Totally. Still easier said than realized, though. It's an everyday effort, not letting fear get the better of me--in MS and life in general. I've been thinking a lot about the things I've wanted to do "someday," and I've only just realized, at age 34 (boo hiss), that "someday" is "right now." I am a professional dilly-dallier, though, so I'm going to have to work extra hard to get my butt in gear. :-)

Hope all's well with you, Carla. Happy New Year!