How is everyone?

[patty]

Hello everyone, how wonderful it is when reading postings relating to exactly the same experiences we all go through at some time or other, like Chris in the small shops, I can relate to this so much, one of my pleasures in life was shopping especially the little shops but alas, (bull in a china shop comes to mind) I put so much pressure on my lower back and legs that I can't wait to get out, but now through this site I know its not all in my mind, I'm not having a panic attack etc, as the medics like to label us with, its our OT. But our determination to still try and do all the usual things, even in different ways makes us all a credit to ourselves so be happy keep smiling, at least we understand each other.

Take care, Patty

[maria]

Hi everyone,
My thoughts are with you all. My appointment to see the neurologist in May was cancelled so, I saw him a few weeks ago. After the usual neurological tests, I was told I have OT. For some time I guessed this was the problem but thought it would have to be confirmed with an emg but was told this was not necessary. Regarding medication, I was told this was not worth prescibing due to side effects. I told thg neurologist how down I sometimes feel and was told there are people who cannot stand for as long as I can. Believe me I do count my blessings but do feel like a prisoner within myself at times because I was unable to fulfil my ambition of becoming a nurse. I get tired trying to balance when I cannot walk at a steady pace and thinking in advance of where I'm going to sit or find something to lean against. Lower backache is also a problem.
In recent weeks, I have had high blood pressure , weight loss, panic attacks and migraine. As I have an under active thyroid gland, I asked my doctor if too much thyroxine could be causing it. I was told to reduce the thyroxine over a month and go back. I decided not to take any during the last few days and my blood pressure does not seem as high. Now I'm wondering if I should have done this as my doctor did not advise it. Apart from all this I'm fine !!!!! I feel as though I'm swaying like a drunk when I walk slowly or stand but never mind. At least I can walk and get around.

[Marianne]

Hello Maria: I don't think I've seen any postings from you, but I empathize with all you have said. I was diagnosed back in 1996 just after I graduated nursing school so I know how you feel. I too have a thyroid problem (Graves Disease)dating back to 1976 and have been taking Levoxyl since then.

Unfortunately, I cannot stand in one place more than 30 seconds at a time after which I must find somewhere to sit. I try to walk briskly when I must but not for much more than about 2 minutes at a time. The lower back gets involved when I walk or stand more than I can. I worked until January of this year, but had to retire.

It is true that an EMG is not necessary to diagnose OT. OT can be diagnosed without performing an EMG if you have a competent neurologist. Please stay connected to all of us here on the forum. We are all in this "fight" together and we all give encouragement to one another which does not make us give up. The postings have been scant in the past few weeks, but I'm hoping that perhaps some of us are on holiday and that might be the reason why the forum has been so quite.

Stay well,

Kaylie

[Joan]

You know I thought my OT hadn't changed much from last year but I just got a surprise. I went for my yearly mammogram and found it difficult. They take 4 pictures and twist you into unimaginable positions so there is not much to hang on to. I had to lean on something in between pictures and at the end of each picture I was shaking like a leaf. Absolutely no sympathy from the technician which made it worse. I asked her what people with problems do and she said I had to get a special requisition from my Dr. and they would do it in the hospital instead. You know what, I'm just gonna do it again next year and shake like jello because I am stubborn.
How is everyone, I miss hearing your day to day stuff. Actually I need to hear it.

[patty]

Lovely to hear from you Joan, I too went for my mammogram but asked the technician if she could do it pretty quick because of my condition and I have to say she was very good and asked if I wanted to sit between each "picture", she also said I would have to go and have it done in hospital if I could'nt stand long enough, ours is a mobile service and I had visions of the van shaking like mad but gladly it did not!! Just relieved we don't have to stand for our "other" cancer tests, the mind boggles.

Take care, Patty

[Marianne]

Hello Ladies:

I must say that the radiology group I have my yearly mammo at is very in tune with all of their patients. If they see that you are having a hard time trying to stand in the contorted positions they attempt to put you in, they are kind enough to ask if you need to sit. Actually, I tell the technician, upon entering the room, that I have trouble standing more than 30 seconds at a time without a tremor and they are very accommodating. Let your technician know before they start that you have a condition that does not permit you to stand longer than ____ and I'm sure they will accommodate you.

Sure am glad that the bone density tests don't require standing!!

Stay well,
Kaylie

[jolarson]

I have a mammogram coming up soon and always dread it, mostly because of the standing issue. The last time the women's center at the hospital was very quick with me after I told them my problem. I have just returned from a driving vacation which is much easier than any airplane trips. Checking into hotels I am able to lean against the counter so that helps. I went with my family so obviously that was the key to putting luggage etc. on carts. My grandson is a freshman at college about 500 miles from where we live and I was having so much fun with everyone that I just tried to forget about my problem and went ahead and let everyone help me when I was in a tough position. It was endearing to have young college kids help me up the football stadium, into restaurants etc. I try to fake it and walk fast to the nearest chair or wall but when I am not able I just give in and let everyone help. Also it did help the depression problem we all have with this stuff to just get out of my comfort zone. Now that I'm home I am again going from one chair or stool to another because I can only stand for 20 seconds or so. I have another appointment coming up at UCLA and have been in touch with my doctor there but it is all about the medication I take, clonazepam. I have also told my doctor about Susan from this board but she hasn't responded about that. One of the first things I did when I returned from my trip was to check this board which I check every day when I'm home. It is comforting to know that I'm not alone.

[gloria]

Hi! Gals: Since the subject of mammograms has been posted I thought is was time to post my story that I have held back to post on the website. I too had a mammogram in June but found the technician very understanding and showed me how to hold on and drew up a chair between pictures. However, after a few pictures she said "please excuse me I need to check on something". When she returned she said they found a tumor and wanted me to have a biopsy the same day. I did and it was malignant. I have had surgery and I'm now having radiation treatments every weekday for 5 weeks and must take Arimidex for 5 years. I have amazing confidence in my treatments and feel I'm already on the " cancer survivor list ".....so now back to business of OT .

As always, Gloria

[jolarson]

Oh Gloria, my thoughts are with you. I just know you be on that survivor list, for sure. You have such a positive attitude and have brought this forum and so much help to all of us that you can get through this too. Please know that we are all there for you with much love, hope and prayers.

[patty]

Hello Gloria, where do we begin here, only to say thank goodness someone started a post re; Mammogram which has enabled you to tell us your story. My admiration for your strength and silence is ten fold, I should think every single one of us on this site wish you well and a speedy recovery.

Take care, Patty

[Joan]

Oh Gloria, I'm so glad you told us. I've been thinking you were unusually quiet. Please keep us informed as to how you are and how you are feeling. I know it's an OT forum but we all have other health issues and because we help each other work through OT issues I know we are a pretty sympathetic bunch. Sometimes you just need an ear and a cyberspace hug. Thank heavens for mammograms and I won't complain again about the wobbles.

[Chris]

Wow Gloria....that is a bit of a shocker but thank goodness for mammograms. Thank you Joan for bringing this topic up. My last mammogram was about 2 years ago and I found it quite difficult so I have been avoiding making an appointment. I think it is time that I do so now though....I guess I just needed a strong reminder. When I book my appointment I will inform them of my problem and hopefully it will be easier than the last time. We have just had a new state of the art machine opened here at our hospital but I gather the wait is quite awhile.
My thoughts are with you Gloria.....hang in there....you will be a survivor. I have a few friends who are breast cancer survivors and they are doing extremely well. They all say you have to keep a positive attitude and don't be afraid to ask for help when you need it.
Keep posting...
Chris

[Blossom]

Hi Gloria
Best wishes for your recovery. You are a continuing inspiration.
Blossom

[aussiepommy]

Hi All,
I just wanted to have a bit of a vent if thats okay.

I'm feeling like a bit of a failure. I am really struggling to keep up with my own expectations. i like my house to be clean and tidy and since i've been pregnant i have struggled to do much due to my hips being ever so painful. I let my washing go and I gave myself a break thinking it's only short term, so it doesn't matter. Now my hips are feeling better, except when i sleep, I am struggling with my OT. After doing 5min housework i have to sit, i feel extremely tired and my legs feel like i've been doing a workout. I wonder if its a mental thing, since i've been diagnosed it seems like its gotten worse. Could it be that pregnancy makes my simptoms worse?

I just want my life back. I feel ever so guilty because last night i taught my oldest son to do his washing. He was pleased with himself and i was extremely proud of him. If it was under different circumstances i would be happy to be teaching him these life skills but i know he is eager to do it to help me. iI had kids to nurture them, not the other way around. My kids are wonderful, i feel blessed.

Another worry is how i will manage to adapt with a new baby. Especially when its time to do the chasing around when bubs starts walking.

i know this is all new and i will adapt and i will find useful tips on this forum, but i its hard to keep positive.

Also i want to exercise but i struggle with basic ADL's, how do i maintain some fitness?

Sorry, so many issues. It is good to get it off my chest.

Thanks for listening,

Aussiepommy

[MikeS]

Hi Aussiepommy (wouldnt mind knowing your first name)
You vent as much as you want.No one here minds we just want to help.I cant help much with the baby stuff .I dont much about the social services there but is there a way you can get a home help /nanny to help with the new baby?Kids are great , yours will learn that mum needs help and you are blessed .It was only a few months ago that my daughter had to push me in a wheelchair for the first time I was all sad and she was all positive and thought it was cool that we didnt have to stand in line for anything and said lets make the most of a bad thing.I also had that same feeling after I was diagnosed,that things were worse but then realised they werent it was that I did not have to wonder why I couldnt do things or my legs ached or back I knew why.After a while you will get used to it ,you must make sure that everyone you are mixing with knows as well so they understand.All my friends help me ,making sure there is a chair handy etc.
Im sure within the next couple of days you will get good advice on exercise from the guys here.
We all have good and bad days.We all wish we could stand for more than a few seconds.But it is what it is.
I have a saying 'Somedays you are the bug and somedays you are the windshield' .....
Keep smiling

Mike