potsgirl

Arizona Girl & Rene,

Thanks for your words of support and encouragement. Rene, I'll give you a call soon so we can talk, if you're up to it. Thank God for the Forum and my friends here; we've moved to a new neighborhood so don't know the neighbors yet, and I got sick as soon as I moved to Tucson, so not many friends in the area, either, but we do have a couple people we can count on. My mother and step-father may come around the time of the surgery, too.

Thanks again, and my thoughts go back out to all of you~

Peace,

jana

I wanted to make a comment about being your own doctor...After many frustrating phone calls and not getting test results, I have made the decision that I have to be the one that ensures all test results and notes get to the right doctor, with copies to me as well. Doctors seem to be just to busy, and there are more and more PRN's and assistants trying to carry the load now. It's a major pain in the ***, but if I don't take responsibility for my health concerns, I'm never sure that they'll get done or if I'll be missing something...

My thoughts are with you as you try to struggle through all of these problems. I hope you find an answer soon, and please let us know what you find out and how you're doing.

peace,

jana

Love that sense of humor amongst everything going on! Isn't it what really saves us in the end?

Rene,

I have not had experience with any of these meds, but I just wanted to let you know that I'm thinking of you and how scared you must be to have to try yet another medication without knowing how it'll affect you. Starting/stopping/changing meds has become my least favorite things to do, and I'm sure you'll get a lot of agreement from people on the Forum. If you're trying a tiny amount, and if you came off the other drug appropriately, I would get this a try. You never know, it might be the best thing you've ever taken! I was I were there with you so you'd have a friend by your side as you take the Clonidine. Please write tomorrow and let us know how it went. I know you can be a strong, brave woman. My thoughts are with you...

Blessings,

love, jana

I'm sorry I can't offer any info on this condition you're suffering from, but what a scary thing to have happen. I would definitely make sure I talked to a doctor regarding this as soon as you can. Perhaps some of the meds you take are causing this side effect? Please take care of yourself, and let us know what you find out.

Blessings,

Jana

Thanks for the updated info. It certainly will come in handy to many of us on the site, as some are currently fighting for Federal Disability (like me) or thinking about it. Thank God for long-term disability from work!

Cheers,

Jana

Shoe,

I just wrote you a long email, and the site ate it. In essence, I have a problem similar to yours with movement on my left side, toes, fingers, jerky movements, weakness. My neuro at Mayo said he was sure it was from a TIA, since I've been scanned and found to have an abnormal number of ischemic lesions, with at least one small stroke. You may want to seek another opinion, just to be sure.

Please let us know what you find out, and how you are

Cheers,

Jana

Thank you all so much for your kind and supportive words. I love that the Forum is here for all of us, and that we all help support and care for each other. I think of you all and pray for you, also. May you all have a peaceful, hopeful and restful day today.

All my best,

Jana

My BP runs very low, so I'm supposed to be taking an unGodly amount of salt every day. I bought some buffered salt tablets (make sure they're buffered so they don't upset your stomach) from the local pharmacy. If they don't carry them in stock, they can order them, or you can find them online. I eat a lot of pretzels, drink bouillon, and take the salt tabs. Make sure you're drinking a LOT of water, too.

Good luck, and welcome to the Forum!

Jana

Dear Suzy,

I think you and I need to get together and have one long, commiserating talk session! I'm really sorry that you're feeling in such a bad way again. Please make your appointment at Mayo (and let us know when it is) to try to get to the bottom of this. I hate to think that you may be needlessly suffering. I know it seems like a lot of work to get to Scottsdale, but it'll be for the best in the long run. I'm thinking of you and praying for you. This will pass...

Hugs and positive energy,

Jana

I understand what you're going through. Sometimes when I get like this, I simply go off to the bedroom and read a book and try to relax. Sometimes removing ourselves from the situation is the best course of action until we're feeling more 'ourselves' again. Also, I always let my boyfriend know that it's not him, and I'm not in a bad mood, but that I have a horrible headache and it's best if I have some quiet time, or watch a show where we don't have to interact much.

Good luck, and you're not alone!

Jana

Please see my post, mistakenly put under Morgan's second one...Hope it helps.

The hand washing sounds like a ritualistic action to me that is not being 'forgetful'. I've had clinical OCD for about 12 years now, and it is certainly about control. Before this, I battled with anorexia, which is also about control. The more everything in my life was out of control, the more ritualistic I became. I had to fold things a certain number of times, and they all had to face the right direction. I replayed scenes where I thought I'd said something dumb over and over in my head. I couldn't let small things go...

Has anyone seen the movie "As Good as it Gets" with Jack Nicholson? It's a good one that helps explain what OCD is. If anyone here is really worried about it, they really should see a psychologist. I take Paxil for it, and it's help a lot.

Best,

Jana

Summer & Shoe,

Thanks for the kind words and thoughts. You both make excellent points. I need to take every 'up' time period I have and enjoy them with my fiance.

Warmly,

Jana

Sweet BellaMia,

You are always a ready source of comfort and take such good care of others. Thank you my friend for responding to this so quickly and with such kind words. I'm thinking of you as well, and always hoping for the best. We'll talk soon.

Jana

Suzy,

Just reading your post made me feel better and much less anxious. You're a very caring person with such a soothing manner. Thank you for your kind response, and I hope you're doing well.

Your friend,

Jana

Jan,

I don't get the same symptomology that you do, but I get tightness and sharp stabbing pains right in the center of my chest. I can either be exercising or at rest. I agree with some of the others that the best position is to lean back in a recliner with you feet up and your body more or less at a 45 degree angle. Also, I've raised my bed 4" and that seems to help as well. I don't get hoarseness, but I get a 'tiny voice', like I hardly have the energy to talk. If you don't want to go in to Urgent Care while on vacation, perhaps you could be seen as soon as you get back? Hope you feel better soon.

Jana

Nauthiz,

I'm so sorry you're going through all of this. I also have trouble keeping weight on, and so I'll offer what advice I've been given...Have you tried the Ensure or other drinks to help put on weight? There have been days where I just eat whatever sounds good, just so I make my daily calories. This means a Pop-Tart, a bagel, a milk shake, whatever will give you some calories. Right now I'm hooked on Belgian waffles and I eat one every night. They're decent nutritionally, and taste so good to me with powdered sugar. Let your mind wander, and if anything sounds good at all, go for it!

Also, keeping track of your calories helps you know if you should be eating more. Sometimes I have to push myself to make it to 1800 calories, some days I don't make it, but I get close. Balance bars, things like cereal can help make the difference. You should probably be eating around 2100 calories a day to maintain a healthy weight. My metabolism seems to runs really high, too, so if you're like me, you may need more calories than that.

I know websites where you can figure out how many calories your body needs, etc, and if you're interested, I'll give you the info.

Take care and good luck!

Jana

Hello All~

I'm having a very hard time right now dealing with my own symptoms, plus a new chronic disease that is very painful. This is enough to me, but unfortunately, we just learned that my main source of support, my fiance, has prostate cancer. His brother died of it at the age of 53. My boyfriend is 55. Next week he goes in for a bone scan to see if the cancer has spread, then a week from Monday we talk with his specialist about setting up surgery to remove the gland, and then radiation treatments, as long as the cancer has not spread.

My main problem is that I probably cannot take care of him while he's going through this, and recovery time is 2-6 weeks. I rely on him to get the groceries and drive when I'm not up to it - which is too often. I feel horrible guilt that he's taken such good care of me, and I won't be able to reciprocate in the same way. I feel awful! He's an English teacher in a high school here, so at least he's off through July for surgery and recovery. I just feel so useless!

Thanks for listening,

Jana

Hi Erika,

My doctors have always emphasized the need to do moderate exercise to help keep our bodies from becoming deconditioned, and to keep our body parts mobile. I have always been someone who loves a good work-out, so that is usually my goal 4 times a week, even if I just walk the treadmill as long as I can. On the days that I go to the gym, I usually am not up to much of anything else, but it gives me a goal and some social networking. In other words, it gets me OUT of the house. Some days I can't make it, some weeks I can't make it, but my goal is always 4 days a week. If nothing else, it certainly helps my anxiety and makes me feel like my butt is growing huger by the minute - just the hour!

Best,

Jana

I love to write, also. Are you a list-maker? I'm a perfectionist/OCD (a little) and I live by my lists. I always write out my questions for any big doctor visit starting a couple of days before my visit. Just a suggestion...Vanderbilt is a terrific place to go.

Are you still working?

I had terrible reactions to the Florinef and had to stop taking it. It gave me headaches, nausea, and I also had problems with my sleep. I just felt worse taking it than I did without it. I know it can take some time to adjust to new meds, though, so perhaps you need to give the med another week or two to see if it gets better. You might want to call your doctor and see it he/she wants you to start off on 1/2 dose. Many of us here don't tolerate meds well and have to start on tiny doses.

Hope this helps,

Jana

Welcome to the Forum, Shoe,

Wow...That was a long intro, but interesting. I am unaware of the urinary issues, but some of the other problems you list I'm certainly familiar with...night sweats, utter fatigue, et'c. I think the first thing to do is to have a Tilt Table Test done, by someone who really understands our disease, so you can pinpoint what's going on in your individual case. The only way to get the best and most appropriate treatment is to figure out just what is going on with YOUR body. There are some experts listed here on the Dinet site, or many people can tell you good doctors to see if there aren't any in your area.

Use this Forum for help, guidance and support, as you'll find it in abundance here. You are not alone, and there are many who care. Best wishes and good luck!

Jana

Yay! What a wonderful story of accomplishment. Make sure you add it to the list of 'positives' that's on another current thread. I'll check it out!

Jana

Suzy,

I'm sorry that you're suffering from a new and scary-sounding condition. Please get yourself to a doctor and get this looked at as soon as possible. Take care of yourself...I'm worried about you. Sending you lots of positive energy and thoughts~

Jana