How is everyone?

[gloria]

Hello everyone: Here on what I call ' Mike's Pages',(How is everyone?) I just re-read some of the 12 pages, definitely a record breaker!! I have had the pleasure of meeting Mike at both of our meetings. He is very dedicated to our OT cause. There are a number of other people who work hard as well but it is necessary that everyone with OT must find some way of promoting our OT disorder. Here is some happy family news that I have to report. As you might know Jeff is my son and the administrator of the website. He and wife Beth's daughter Sarah is getting married on New Year's Day. I'm already practicing getting dressed for the occasion because you all know how long that takes and it is a morning wedding. Also I can not wear sneakers but found one inch high heel shoes that will have to do. OT will not stand a chance that day, I will do a lot of deep breathing and sitting to savor every minute. Happy Healthy New Year, Gloria

[Lorie M]

Gloria,
What a wonderful event you are going to experience with the wedding coming up of your grand daughter. I think it is great that you can practice dressing since I probably would not have an outfit yet. That would not be because of OT either. Just because it takes me a long time to find something! ha!
Have a great time and give Jeff and the family our regards.
Happy New Year!
Lorie M

[Blossom]

Hi to everyone and best wishes for a good year in 2011.
Congratulations and all the best to your family Gloria and Jeff on your grandaughter/daughter's wedding.
The current year (2010) has been tumultuous so I am hoping for a better 2011. Over the last couple of months I have had 2 operations for breast cancer and am now having chemo. I know some of the contributors to this site have also had experiences with breast cancer and will understand my situation. I just wanted to comment on how POT can complicate other conditions we sometimes get.
Standing while having a mammogram is obviously more difficult with POT and luckily the technicians allowed me to sit between takes. It is amazing how difficult it can be to stand still especially when you are already anxious and you need to hold it so the pictures re not fuzzy. But even when lying down for a breast MRI and trying not to shake for 15-20 nins also proved exhausting. Oh well now there are a few more medical people who have heard of POT as a consequence which must be a good thing. Of course no one should be put off having a mammogram because of the difficulty of standing. It is another good opportunity for spreading the word about POT and once explained most radiographers are happy to help to ensure the best quality pictures even if it does take a bit longer.

[patty]

Hi Gloria

Your good news is so refreshing to hear after all the worldwide gloom and doom of 2010, so lets look forward to better times in 2011. As you probably know we are having a wedding of our own here in the UK with Prince William and Catherine, it will no doubt cheer the country up as will yours on New Years Day, have a lovely time and a happy and prosperous New Year to you, your family and all our friends here on the OT forum.

Patty

[Chris]

Hello everyone and Happy New Year!!!
Congratulations Gloria.......what a wonderful way to start the new year!
I am sorry to hear of your cancer diagnosis Blossom but glad to hear that you are handling it well and on the road to recovery. I too find that having a Mammogram extremely difficult but I haven't let it stop me. I am now down to having one every second year and the last time was the best experience of all. I explained my situation and they were very accommodating. I was able to sit on a rolling office chair for some of the Xrays and the others they helped me to stand when necessary and then sit down as soon as they were finished. Needless to say I was very pleased that I could actually have it done as early detection is the key to beating it. The technicians were quite interested in my tremors as I was the first person they had ever seen with OT. Somehow that didn't surprise me as we definitely are a rare breed.
Take care everyone and hope 2011 is a wonderful year for all of us!!!
Chris

[jolarson]

Congratulations Gloria and Jeff. What a wonderful day you will have and Gloria I did this last year and it went well. But I did have a fella on each side of me as I walked down the aisle before the bridesmaids. From then on a nice seat where you can view everything and everyone and no worries. And I love that you are practicing getting dressed because it takes us all so long! OT will NOT stand a chance that day!!

This site is so comforting, knowing that we are not alone. Thanks to you, Gloria..........

[QuiltinDirksen]

Hello Everyone,
I was sooo excited to FINALLY get a diagnosis a few days ago. My new Neurologist is amazing! I am so relieved to find that this shakiness and weakness is treatable and controllable, at least for now! I am a nurse and it was almost to the point of giving up when Dr. Amir gave me hope! I worked yesterday without sitting or grabbing on to a counter even once! I can't tell you how exciting it is to take a shower without leaning on the wall or dragging a stool in the stall! Seeing as I'm very new to this, I am very open to suggestions on medications, diet, exercise... whatever! I'm going to my Dad's memorial service (graveside) on Monday am, and I'm hoping I can stand throughout the service without being anxious about finding a seat. Thanks for this website, I hope to make some new friends. It is great to be understood about this crazy diagnosis. Linda

[trennyC]

[quote="franann50"]Gloria, my thoughts and Prayers are with you.
I am a 2 time Breast Cancer Survivor. you can get through it. I am not making light of it, but just keep your positive attitude and you will make it!!
I also had a scare this summer -I thought oh! no! not again, but it turned out to be scar tissue.Thank goodness.
Good luck,
Fran in MA[/quote]



That was great news that survives from cancer. However, I like your attitude that you have positive thinking even you suffer from harmful disease like cancer. I hope all cancer patient have that kind of attitude who have a strength to fight their illness.

[gloria]

Hello everyone:
I just thought I would bring up a subject for all our female OT members and that is routine mammograms. Last week I had to go for my yearly check up and as usual spoke to the technician about our standing problem and that I would need a chair behind me. She said would it be better if you sat during the whole procedure? That would be great I said!!! and thanked her very much. She merely sat me in a chair in front of the machine and pulled it down to my level and took the pictures. What a difference that made, no hanging on to the machine trying to steady myself and breaking out into a cold sweat in the process!!!!! Of course it did not take the “ big squeeze” out of the picture but made the ordeal so much better and reduced the stress. So speak up and perhaps inquire if the lab you go to has the equipment to accommodate. Best wishes to all OT friends, Gloria

[stella R]

Hi GLORIA,
hOW ARE YOU DOING?
I had my exray this week also.
I sit in my walker and thaat work very well.
It didnt hurt too much.
I am nervously waiting for the results now
cheers
Stella

[patty]

Hi Gloria, lovely to hear from you as always.

The Mammogram experience in our situation is not a pleasant one and the way it works here in the UK is that a mobile unit comes to your area at certain times, I did explain my problem the last time I had mine but I guess they did not have the facility of being able to sit during the experience, but the technician was very understanding and I was able to sit after each process otherwise I would have had to go to our local hospital to have it done so I took my chances and went with the mobile unit and for me it was ok, as long as people understand it does help greatly.

Thank you for keeping this site going as without it I would never have known what my condition was and having others who fully understand is wonderful.

Regards, Patty

[jolarson]

Hello everyone - I have been having trouble with ankle and feet swelling in the past few months. Do any of you experience this? My doctors (who know zero about OT) are trying to figure out what is causing the problem. I am on blood pressure medications which do have a correlation with kidneys, but I am not getting any answers. So, I am wondering if this could be from POT. Thanks for any input...................

[aussiepommy]

Hi Jo, Nicola here haha
I just wanted to let you know that i have swelling on my feet, not around ankles but on top of my feet. I thought it was from limited movement but i have been more active recently. Also i tried putting my legs up but that isn't much assistance. It comes and goes. Do you think it may be OT related? Maybe a poll is needed for all these things we experience?
Thanks for sharing.

[jolarson]

Hi, my dear Aussie friend Nicola. I am in the process of changing neurologists. UCLA diagnosed me which I am grateful for but other than the many meds I couldn't tolerate that they prescribed for me, I am now having all my records changed to a more local neurologist. I am also sending him every site about POT, etc. to familiarize him before I make an appointment. As we know, this may take some time!!!

[Betty]

Hi Jo and Nicola,

Just thought I would jump in here and let you both know, I too, have swelling of my feet and ankles; but I attribute it to too much salt. When I eat very salty foods,(which I try to avoid) my feet, ankles, hands and face swell and retain fluid. I am not on any B/P medication (B/P is fine); so if I really cut the salt, there is less swelling. Of course, prepared foods ALWAYS have too much salt and I never add extra.

I am not sure this and OT are connected; just my opinion. It would be interesting to know if others exprience this as well.

Betty