potsgirl

It's interesting that some of us have the extra weight from meds and inactivity and various other reasons, and others of us (like me) can't put weight on! Hb4M, I think you just need to make sure you're eating a balanced diet of the right amount of calories for you (I can help you figure that out, or there are websites like self.com that have 'tools' to do it); get as much activity as possible, even if it's doing some laundry or chair exercises; and checking to see if you're taking any meds that might be keeping that weight on you. If you're doing everything you can, then I think you may need to accept that the weight your at is the weight you're supposed to be....a visit or online research regarding nutrition may help, too.

I just found out yesterday that I have hypoglycemia, and so I need to continue eating every couple of hours to get my blood levels balanced. I eat 4 times a day, anyway, so I may need to stick in another snack somewhere. Make sure you get blood work done to check for a medical issue that could be hampering your weight loss efforts, too.

Good luck and let us know how you're doing!

Jana

More power to you! I love that you're trying to not focus as much on the negatives and are even getting in some exercise. Kudos to you! It can be so hard...I know some days I'm sure I won't make it to the gym or on our treadmill at home, but once I make myself get my shoes on and get started, I usually do okay. Better than nothing.

I'm so happy your last two days have gone well, and I wish you many more.

Take good care,

Jana

Another great color.

another vote for purple. and i'd buy a ribbon if you end up making some. do we have a logo? if not, we should. maybe a poll is in order....

Oh, yeah. And washing my sheets every other day due to my night sweats. Ugh. Thanks for your informative replies!

Thanks for your replies so far!

Issie, I will definitely try the progesterone cream and enzymes. I know the enzymes had been suggested before, too. Great idea.

Lieze, thanks for you great input, too. Yes, you're right. I just looked it up, and during perimenopause you can still have periods. Thanks for helping me learn something new.

handmadebyemy, yes, I think that there may be a connection between POTS and endometriosis. There are a couple of really good sites (Mayo, NIH, WebMD) that goes into detail on the symptoms of endo.

Any other suggestions/stories are welcome. Only two more days until my appointment, thank God...

Cheers,

Jana

Happy early Birthday, Dani!

I agree with you. I don't even really like Las Vegas (ok, I can't stand it) because some of us POTSies are so sensitive to too much stimulation. All of the people, noise, alcohol can wear you down quickly. Too bad you don't have an option to go to a really mellow place just to hang out with good friends, relax, and get lots of sleep. Actually, that sounds good to me! A nice spa....but I digress. I would make sure you make your wishes and needs known in advance of the trip, and perhaps get a room just for yourself to get adequate sleep? I also liked k'smom suggestion to have your friends read or watch videos of POTS patients before the trip.

Hope you have a really good time, and if you can, post a pix of your little one so we can see her!

Cheers,

Jana

Hello All~

I am going crazy!! For the last 5 months or so, my periods have gotten heavier, my cramping has become almost unbearable, my nipples/breast (new this cycle) get very hard and excruciating to touch, and my moodiness and irritability is off the charts. I honestly thought about putting myself in the psych ward a few days ago because I knew I couldn't get my emotions under control and felt totally overwhelmed.

I haven't missed a period yet, so I doubt I'm in perimenopause. I do know that my mother had to have a hysterectomy at my age, 48, for some of these same reasons (although oddly enough, she doesn't remember exactly why she had the surgery....I'm adopted, and this is my biological mother, so she's checking into it). All I want to do is isolate and read my books....Anyone else? What's helped? I have an appointment with my GYN on Thursday, and I think I must need some hormones. If only I let myself and everyone around me live until then.

Sometimes it's heck being a woman!

Jana

Here in Tucson, we carry chilled water with us everywhere. I usually dump in an electrolyte tablet, but it's extremely important to keep yourself hydrated when it's so hot out. I also go straight from my air conditioned car to another air conditioned place, and having a handicapped parking sign makes that much easier. I rarely use mine in the winter, but in summer, it's a must.

Thanks!

R~

Do you know of any sites where I can read more about the amyloid proteins in the cerebral spinal fluid with CFS? I've had a couple of doctors suspect amyloid, but have never had my spinal fluid tested....Thanks!

Cheers,

Jana

Nuun tablets and Camelbak Elixir are two good tablets you just drop into water and I think they taste better than Gatorade or G2. I initially used Nuun, but think the Elixir is better tasting. You can find them in REI shops or get them online. With the Elixir, you split the tablets in half for 16 ounces of water, so they're not too expensive. Hope this helps.

Cheers,

Jana

It's been an honor to be your friend. We'll talk soon.

love, j

From what I remember reading, one of the main things it can help prevent is fatigue and feeling shaky and weak. It helps your body be healthier, and anything that makes you healthier should make you (and your POTS symptoms) feel better. Oh, and bone health, too. I hope it works for you!

I'm sure you'll be fine. How are you feeling this morning? Claritin doesn't bother me, but Sudafed makes me a little hyper. Benadryl puts me to sleep, which is nice on some nights when I'm having troubles...

Bellamia,

I'm sending you a great big bear hug right now, sweetie. Be well. Please let me know when you're up for a chat.

J

to others....please see my post a couple of lines above. i put it in the wrong place....cheers.

I'm not up to volunteering yet! That's a goal for next year. If you think I never get angry and really frustrated that I have no semblance of my 'past life' anymore, that's not true. I loooong to go back to work. I went back and got my master's degree in anthropology at the age of 40, and then moved to AZ to work with an Indian tribe along the Colorado River. I LOVED that job. I was the archaeologist/anthropologist, getting to fly into the Grand Canyon to monitor our archaeological sites (we had about 40 on the south side of the river), and doing historical work I felt was very important. I had one good year there before I got sick. I screamed. I cried, I raged, I became very depressed.

Finally, I came out of my very low cycle and was well enough to try to go back to work. I worked as an archaeologist for Pima County (Tucson), but it was mainly a desk job. I worked on protecting sacred and important historic sites, before I had to quit again 10 months later, due to my illness.

I've now been out of work for 2 1/2 years, and can no longer even stay up past 8:30 at night. I can't plan anything, cancel appointments/trips/etc all the time, and feel like I'm bringing my boyfriend's social life to a screaming halt. I hate my body and what it's done sometimes. All I'm saying is that I can't rage constantly. I need to grab a little peace here and there, or I'd go insane (although it's debatable if I'm already there).

I hope this helps everyone understand my perspective a little better. Humanb, I'm glad you feel safe to let everything out here on the forum. I think most of us have been in the anger phase with you!

Ciao,

Jana

I moved to Tucson for work about 6 years ago, before my diagnosis. Now every summer I don't go out unless I absolutely have to between the hours of 10 am to 8 pm. If I'm outdoors in the 100+ heat for more than a minute or two, I feel incredibly sick and like I'm going to pass out. I'm waiting to be able to move in a year so so when my boyfriend can retire. I used to hate winters back in the Midwest, now I almost long for them!

You are definitely not alone!

I must not have written what I meant very clearly. I don't mean that you give up on hoping and trying to make your life better under any means available, just that sometimes we need to learn to live with certain limitations for awhile. There's a difference between constantly being angry and hating your life and knowing the best ways to work with the abilities we have at this time. Never give up hope, and always strive for the best for yourself....I know I'm working towards being able to at least volunteer, if not go back to work PT someday, if not more. It's just not going to happen immediately, and I need to be kind and not get too anxious in getting through this period of working towards getting better.

Sorry I was misunderstood - I certainly didn't mean to accept our illness and become complacent. **** no!

Firewatcher,

What an excellent message. We all need to hear this more often. Thanks.

I do this all the time. I keep thinking I can plan things, but then the day arrives and I end up not being able to go to...the movie, the gym, errands, church, doctor and hair appointments, trips...the list goes on. But I agree that at least it's keeping our thoughts more positive than negative. I would rather think I'll make it then be a defeatist and never even try. Talk about zapping your energy!

So yes, I too push. And sometimes, I even get to where I'm going.

Emotional and physical stress will almost certainly cause any illness in your body to become worse. For some, it's a little, for others, it's huge. I'm sorry you're going through such pain and anger right now. It will take awhile, but in time, you'll probably become more accepting and learn to live with your illness instead of battling against it. Save your energy - and perhaps try some meditation when you get to the point where you are able.

Sending positive thoughts and energy your way!

Cheers,

Jana

I really can't add much to what's already been said, except that going to a specialist would probably be for the best (they've been mentioned previously), and that my heart goes out to you and your family. I will be keeping you all in my prayers.

God bless~

Jana

Good advice!

I've been incredibly lucky. It took a long time, but my first diagnosis was my heart problems. A year and a half later, I was diagnosed with POTS. Believe me, I know how fortunate I am. I now have a really good internist, gastroenterologist, and cardiologist (still need to find a good neurologist). I even like my dentist! As I've been reading the posts about people losing their doctors, it's made me realize just how happy I should be. And, I've never been diagnosed with anxiety/depression, etc. Perhaps this is because I've been on an SSRI for the past 10 years.

Good luck to you all in finding good doctors!

Jana