Ok, Slloowwllyy, pulling out of the Agenda Station.Who wants to jump on?

[tonyad]

   Still in Dis-Belief that yet another week..Actually the Last week of Septembet 2010, is here!!!!!

   Ok, for me I am going to try and lay Low this week and have fun w/ me trying to remember to alternate which drop goes in and  when into my eyes and remember my meds as well as to stay Hydrated, and Oh ya..Keep that Sodium intake up, and..Let's see........Oh ya, I need to pay a couple of bills!

    I have switched all of them to on line bill pay as I continue to forget to pay them. This way when I sign on the internet, I have reminders to "Pay Bills" and Hubby try's to help remember also.

   I hope this week Brings nothing but Good to All of you!
Hugs to you all,
~Tonya

[vbc2000]

It's a shame, but I guess we get used to bad news...good news is such a blessing.  Enjoy it :)

[LivingInHope]

If it's true it is God's doing and I'm really relieved about it!  Thanks!

[vbc2000]

That's great news!  Congratulations :)

[LivingInHope]

I got a letter from the endocrinologist today, but I didn't trust him because he was not a very nice acting person towards me, so I called after learning MRI dept. was actually open on Saturdays and learned other than a deviated pituitary stalk, they saw no clinically significant abnormality regarding my pituitary!  So, it would seem my tumor is gone!  Once I see the full report, I might want to get another radiologist's opinion to make sure before discontinuing follow up, as the endocrinologist suggests.

[evo123]

Hope you had a lovely time today xx

Let me know how things are when you get your results, fingers crossed it is good news x

[LivingInHope]

Wow, Evo, it definitely sound like it's time to start hunting for a new primary care physician!  I am hoping my results of pituitary MRI come in the mail tomorrow, as they didn't show up today.  Today's my parent's wedding anniversary and we went out to eat to celebrate!

[evo123]

My week so far -

B12 injections restarted, Ferrous Falmate started, antibiotics started (for an ear infection...like I am not dizzy enough!!).  Prochlorperazine prescibed for dizzyness and neausea (although instructions state do not take if a Pheochromocytoma adrenal tumour is present - I am still waiting for my growth to be proven not to be!) and otomize prescribed for th ear - again although instructions state - not to be used if you have a perforated ear!!!!  I have a large perforation!!!!  Thinking maybe a GP change is on the cards!!!

Globalhiking -

I will be at the patients day on sunday :) x  

I have heard that Prof Mathias may not be there just his autonomic team, I am waiting for Jenni Colzon from stars to get back to me, hopefully he can be there!  Also after recieving the final draft of the agenda I am disappointed to see that out of the whole day they are only allocating POTS: a patients perspective to be discussed within a 15 minute time frame also allocated to syncope management.  Hopefully it will be mentioned during other talks x  

It will be interesting to 'see' how they and us cope with having so many Dysautonomia patients in one room!!!!  Personally, I cannot sit for long in one position and I cannot stand for long either!!!! They shoulod have laid on beds around the tables!!! lol!!  Seriously though I hope we all manage it okay x

[vbc2000]

Heiferly - sorry about your Mom's husband...hope things go well.

Globalhiking - good luck with your appt. and enjoy the seminar.

LA1989 - good luck at Mt.Sinai...sorry it's such a long trip!
Stephanie

[LA1989]

Not too much going on for us this week. We are saving up energy (Nick's anyway) for our big trip to Mt. Sinai next week. We will be seeing a pediatric neurologist that Dr. Rowe wants him to see before our appointment with him. Mostly a "rule-out" kind of appointment. It's going to be a loooong day, though. We are planning on driving up and back the same day (approx. 4 hrs each way) since we don't have anyone here to stay overnight with the other kiddos. My husband is planning on going with us, but if it looks like the appointment may take longer than we thought, maybe we'll leave him here with the other kids and Nick and I will stay the night somewhere.
But that's next week.
This week--nothing. :)
Except I'd really like to find out what is up with his skin. Anyone care to weigh in on my thread?

[mtgardner]

Being on the west coast I seem to be late in signing in here.  ;)

Heiferly hope you hear from Mom soon.  It is worrisome not knowing what is going on.

Globalhiking I have my fingers crossed on your meeting today.  The lectures this week sound very interesting and hope you let us know what your learn there.  I have wondered if everyone who had autonomic dysfunction needs testing at a center.

Enzymelover great on Casey's appts!  This has to be good news to get him in for more assessment.

Yesterday I went without crutches for the first time in 10 days.  I just interspersed activity with resting with my foot up and all was good.  Due to hotter  temps and being afternoon I did get lightheaded in the afternoon when I attempted mowing the clover patch.  Spent the rest of the day down but happy to be mobile again.

I am trying to get a few things done before winter sets in but modified for how much I think I can actually do.  So I won't attempt to paint the whole porch but will paint the steps and a few worn boards.  Modification of expectations seems to be the name of the game these days.

I need to schedule a trip into town later in the week for my allergy shot and a dr. visit to discuss my thyroid med.  Might put it off until early next week not sure. I too need to address bills on line.  Marie

[CHRISTYDRAKE]

The only thing on our agenda is the whole family has dental cleanings on Wednesday.  I hate the dentist, I used to always faint there when I was young, now it just makes me really anxious.  I will be dreading it all week until it is done.

Other than that, nothing else going on.

Christy

[globalhiking]

Hello to all of you ....

This afternoon I'm seeing my case worker for my benefits.
After reviewing the dossier that I have put together for the tribunal, she will let me know if we can re-submit my case to the Department of Work and Pension w/out having to go to
tribunal - I really hope so!!!
and
Sunday, is the loooooong awaited (anyway by me!) STARS Patient Day here in the UK -
Finally I will be meeting Dr Blair E. Grubb - He will talk about syncope and POTS.
The man is my hero - Soooo many of his papers have helped me (and my GP, and anybody else who wants to listen!) understand better this dysautonomia nightmare.
Also Prof. Mathias (dysautonomia expert here in the UK) will be talking about the need and benefits of autonomic testing - He has such a clinic down in London.
Anyway, now my POTS will need to behave, and not go all frustated on me because I won't be able to lay down from 1030 to 1630 - I wish they offered some 'chaise longue' instead of normal ones at Dysautonomiacs meetings!

Heiferly - I am really sorry to hear that you, and your step-dad are not doing too well :-(
I hope you will be able to reach your mother soon, so that you know how he is doing.
You will be both in my thoughts for a prompt recovery!

:-)

[Heiferly]

My mom's husband is in the hospital.  I can't get a hold of her to get an update on what's going on, so I don't have many details.  I do know that he collapsed several times and his BP was 76/47 when they first took it at the hospital.  Sounds eerily familiar, right?

They stitched up the gash on his head, ran at least 3 liters of IV fluids, and were running a ton of tests and admitting him to the hospital ... that was Friday and I haven't been able to get a hold of my mom since.  Stress!  

Meanwhile, I'm in the PITS myself for some reason (I think either a virus or a bacterial infection—whatever it is, it's causing bad shortness of breath and my orthostatic intolerance is inching ever closer to bedridden).  So if I'm barely present around here this week, that's kind of the low-down on why.  Sorry guys, I feel like it's always something.

I hope you all have a good week!!
-Heiferly.

[beema36]

I am resting and.chilling out this week. Have not done too.great last few days and this Friday is grandparents day at my granddaughters school and I want to be in shape to be there. It's her first yr of.high-school and they r serving us lunch and doing a program for us. I just pray I will handle it ok.
Tonya- I use my cell to alert me.to.do.things like Meds and bills. Really helps me.
Enzy-I am glad yr seeing some progress for your Casey:)
Stephanie-just be sure Dr.is aware of the AD. Hopefully with the right hormone treatment u won't have problems.
U all have great week!
Beema

[vbc2000]

Another week...

I have pretty much a week of work ahead of me.  I am however, going to the gyno tomorrow to talk about what I think is pre-menopause...I'm 44.  I am guessing this menopause stuff with all the hormones is gonna affect the AD?  Oh joy!  Does anyone know what I might ask her about that?

I'm also going to my weekly Chiropractic appt.  I spoke to him last week and he was going to see what he could find on his end to help with all this.  He said without the Chiro adjustments, the AD would be worse.  And I thought it might have caused it!?!

Tonya...are you on a salt tablet or do you just try to get it from food?  I've been on a gram since being diagnosed and it has raised my bp from 90/60 to 100/70.  I think it's really essential to my treatment.  

Have a good week everyone!
Stephanie

[tonyad]

    Hooray for someone finally listening!  I am so glad that Casey is going to the specialist as this will give you so many answers and LOTS of Validation ;)

      Again, glad things are moving along for you. Slowly is better than not at all Right?
Take Care,
~Tonya

[enzymelover]

Wheeee,  I'm first!  Well, second really.  Casey is going to his endocrinologist on Tuesday. His pediatrician finally believes he does have POTS, and is going to get him seen at the Children's Heart Center, not this week, but sometime very soon.
He finally got his appointment with Genetics too, but that isn't until late Nov.
So, things are slowly moving forward.

I too, wish you all a great week!
Enzy