potsgirl

I'm afraid I don't know what volume loading is. Please enlighten, Mr. R.

Cheers,

Jana

Yay, Suzy! How terrific that you had a little better of a morning, and more importantly, felt better about yourself. Bravo. Let's all take the little miracles we do receive, and appreciate them to their fullest.

Cheers,

Jana

When is your SSDI hearing? I just had mine 2 weeks ago, and one thing to remember to highlight is the unpredictable nature of our illness. We don't know how we'll feel from day-to-day, if we'll make it in to work, or even out of bed! If you have any questions about SSDI, you can PM me. Hope you win your case!

Jana

I go through cycles with bad headaches/migraines. When I'm in a migraine 'cycle', I usually have them daily for weeks on end. Then they'll disappear for about the same amount of time. When I'm in my bad 'cycle', the only thing that helps me is Darvocet or Percocet. That, and lying down in a cool, dark room for a couple of hours to let the meds work. I've tried shots at my PCP's for the migraines, but they don't seem to work.

Hope you feel better soon!

Jana

My deepest condolences on the passing of your grandfather. You have been such a blessing to so many of us here on the Forum, that I know many of us would love to be able to be there for you in support and give you nice warm hugs. Please draw strength from those of us on the Forum who are thinking of you and sending our thoughts your way.

Take care of yourself,

Jana

The only time I've lost hair has been either from meds or high stress. Have you noticed the correlation between any meds you take and your hair loss? Are you under more stress than usual? The other thing I do to try to avoid hair loss is to only wash my hair 2-3 times a week. If you get really oily, you can use the 'dry' shampoos that are out there now. The more you wash and brush your hair, the more you can lose.

Hope this helps. Cheers,

Jana

Hey you,

I've been waiting to get a response from you, I've been worried! Please email me soon....

Hugs, Jana

I take both a multi-vitamin and B-12. I just started on the B-12 about 2 weeks ago. So far, I haven't been able to tell a difference, but it certainly hasn't made me feel worse. My PCP and neuro thinks it's worth a shot, so unless it causes bad side effects, I'll keep taking it.

Peace,

jana

I really like the calendar idea. Marking out our good days, or at least better days, shows us that the bad ones aren't forever. I'm also on an A/D and see a counselor, especially when too many things come up and I'm overwhelmed. I wish you the best, Suzy, and to feel better very soon!

Hugs, Jana

Thanks, everyone, for their helpful posts. I've upped my B12 (thanks mccaimless), and my Mayo neuro said to get a CT done since I can't have an MRI (pacemaker). The other possibility is that it's a symptom from my pain meds, Oxycodone. However, Lhermitte's (thanks Jan) is enough of a worry that I need to be scanned. I'll leave an update when I have that done.

Thanks!

Jana

Hola my Forum friends!

It's just about gotten to the point where I can't stand to go to movies lately. Is it me, or has the sound increased to a point that's ridiculous? I've even tried earplugs, but usually to no avail. It just to be one of the few social outings I could go on, but now I find myself renting movies more and more. Anyone else?

Cheers,

Jana

This sounds like it may be an infection. Have you gone to an ENT yet to rule that out? I think I'd gargle with salt water, and get in to see my ENT soon.

Cheers,

jana

Hi Jess,

I've also heard about these full-body scans and done some research into them. Everything I've read so far is more negative than positive, and most doctors don't agree with this process. It's too much radiation, and can do more harm than good. Like others here have said, I'd definitely only do a CT or MRI scan of what body part is creating the most problems for you. If you do go ahead and have it done, please let us know what it was like...

Cheers,

jana

This is terrific, Nauthiz! Thanks so much for posting it. I've never seen one like it before.

Jana

Erika,

I get blood pooling in my feet like you do, but usually it's much worse in my abdomen. I'm always 'bloated'. How lovely. I think part of it is also from my whacked-out digestive system. My feet do turn red and purple when I stand, though.

Cheers,

Jana

I'm in Tucson with a doctor that has about 5 POTS/dys patients. I've met one so far, and she's very nice and my age. She's had this illness for 20 years, while I've only had it 2, so she's a good resource. She lives on the outskirts of the city, though, so it's hard to get together, especially with both of us sick off and on! Still, I chat with her by phone and email, FB.

Cheers,

Jana

I'm also on board with EM and FW. The best, most understanding doctor I have is my PCP, who is a PA. She is willing to learn about my illness, spends a considerable amount of time with me, and is just truly a terrific person. My only grievance is that she's on the other side of town, after leaving the original practice she was with...but, she's still worth the drive!

cheers,

jana

I think some of us bruise easily. I know I do. Even something like carrying a shopping bag on my arm or wrist will cause a deep indentation that stays for hours. Very weird, I know.

Hi Stacie~

I recently went to see a highly recommended plastic surgeon about a breast augmentation. Like you, after pregnancy and a large gain/loss of weight, my breasts are rather sad and forlorn, so as I get older, they get worse. My plastic surgeon would do it, but only at the hospital with an anesthesiologist right on hand. Our blood pressures can go all over the place while under anesthesia, so they need someone to be there to monitor it any time we're 'under'. In fact, when I had my gallbladder removed 4 months ago, I had to wear pressurized boots, too. I have a colonoscopy coming up, and I have to have that at the hospital instead of at the office..

My doc also told me that the pain is usually incredibly bad the first couple of days, and then it slowly lessens during the next 2 weeks, as April wrote about. I would love to have this done, but right now am too scared to try it. Please let us know what you find out. I'm not trying to be discouraging, just factual. If it works for you, you have to let the rest of us know!

Cheers,

Jana

This is terrific! They'll be a whole group of us going to doctors armed and ready. Anymore, you really have to be in charge of your health care!

jana

Yes, the pain meds definitely make me more dizzy and likely to pass out. I have to move very slowly, but when I take them, I also feel like my anxiety is much better. I guess it's the sense of calmness. So far they haven't affected my BP much, but I have put on about 5 pounds. I'm trying the weekend without them...

Jana

Congrats on the great news! What a frustration it is when docs drop you...I just had a neurologist refuse to even see me because they already had 'too many stroke patients' and I should go back to my previous neuro who never got back to me or carried through with anything. So....YAY!!

April,

I think that there are tons of us out here that feel the same way or have felt the same way in the past. I could've written a very similar email, especially the first 6 months after I knew I was ill and that I finally had to leave my coveted job. I went back to school to get my master's, worked some great anthropological/archaeological jobs, got my dream job in Tucson, and 9 months later had to quit. You have to let yourself go through a grieving process for the life you once had, and when that's over, start looking at how to make your new life the best one possible. Hopefully, you'll recover fully one day. But if not, or while you're waiting, you have to use other channels to get what you need.

The Forum has been terrific for me in reaching out to others and making friends. True, they're not usually near enough to meet for coffee, but I've developed some great friends via this Forum who I email and speak with...we support each other every day. I'm in a situation like yours, where my day-to-day functioning is up in the air, and often I can not get out to meet my old friends for coffee or go to a movie. I'm in bed by 7-8 at night! I have my boyfriend, who is very supportive, but it's not like having girlfriends...I try to walk most days of the week, but most of the time I'm home, on the computer, reading books (thank God for books!) or watching shows I've recorded. I know it's frustrating, but on the bright side, it sounds like you can work - which means that once you find a job, and you WILL - that you'll have outside contact and the ability to make friends again.

Please feel free to get support/friends from Dinet, and I hope you're feeling better soon.

Hugs,

Jana

Carinara,

Thank you so much for posting about this topic. I know some people on the Forum have had this done, but I think the majority of us are wondering about it and interested perhaps in having this testing done. While I have not had this test, I would love to do it. I'm going to ask my cardio to refer me to an endocrinologist and ask about it. If you do it, please let us know more about it. Sorry I can't be more helpful at this time, but best of luck to you!

Cheers,

Jana

By the way, most of my relatives are back in Germany and Switzerland....

I get nauseated and usually have diarrhea right before and sometimes the first day or two of my period, but nothing to the extent that you have it. I'm sorry that it's been so terribly difficult for you. I'm siding with Broken Shell...you need to visit your gyn and look at trying to stop your period and/or adjust your hormones. For myself, being on the pill has helped with my symptoms quite a bit. Are you on a pill? Perhaps a different combination of estrogen and progesterin would help. I sure hope you get relief soon!

Cheers,

Jana