UOAA Discussion Board

smashms, good for you 20 steps! I remember when 4 steps were a great achievement for me. You sound like you are keeping on top of things with the questions re dosage. I hope you can get a lot of rest this week before moving to rehab. Chin up!
All the best,
TGH

Smashms: Good job, good job on the 20-some steps. That, in itself, is an admirable accomplishment.
Continued best wishes, - Karen -

Those 20 steps killed me today i can tell you that. Yes i am keeping an eye on things. It's my only hope to any return of function. On a good note the swelling and puffyness in my bad hand i believe is going down some. I keep working my fingers, the ot said to do it and it seems to be working some. I am sure when i get upstairs that they will work them a ton as well.

Well ot was in today as well as the social worker who said once insurance clears i am set to go upstairs to rehab. Since i have been in before they think it shouldn't be an issue. Walked about 10 steps today as nerve pain is starting to kick in pretty bad now. And the puffyness is back in full force as well. All in all it has been 1 step forward and 3 steps back. They are bringing me a foot drop boot while i am in bed as well.

smashms: for the one step forward, three steps back. I know you'll not give up!
TGH

Made it farther on my evening walk the farthest yet! They are also supposed to increase my steroid as well.

Going up to rehab at some point today. Should be a very busy day. Will update more later

(((((((GROUP HUGS!!!!)))))))

Sorry I've been slow on the posting... I'm finding that likelihood that I have Addison's daunting and massively frustrating! If you had asked me how I envisioned how I pictured myself after a year (almost!) off any chemo or radiation, I probably would think I'd be more like my old self... Despite the mobility challenge that my darn tumors will always present... I honestly was looking forward to *feeling* both better/more ME & ready to take on the world!!!
Fooey on that :p Considering that 99.999999% of the world has no clue what the endocrine system is or what it does... Man I thought I had at least a basic idea of the endocrine system... Nooooope! This crash & burn of my endocrine system is massively humbling! The hardest thing is just how freaking exhausting it is to do the most basic of things... Like walk 20 steps to the batchroom. UGH!!! Enough oh my bitching over that which I can only work to find balance & knowledge.

So yes Karen pleaaaaase I need guidance & info my Addision's Yoda! it is so good to see you posting! & UBER YAAAAAAAAAY!!!!! for your MRI being stable

smashms - I'm so sorry that you're back in the hospital ... But! congrats on the 20 steps, I know the first steps are the hardest... But know you have the sisterhood right here rooting & cheering for you every day. I hope that you're able to get back to your normal so you can get back home because being in the hospital sucks!!!

(Whew! I thought this post I started writing the other day was gone and I was totally dreading trying to a) remember what I wanted to say and b) rewriting it

Made it to rehab, the first day was brutal. It's 5 am here on day 2 and i'm awake again. Not sure why. Have a bit more function in the leg but still nothing in the arm. Today they will be fitting me with a compression glove for the swelling that is in the hand. And possibly a night brace. They have a robot they plan on using as well not sure when that will come into play but i'll take anything now if it means i will gain function back. Did the stairs a few times yesterday as well. I was very surprised i was able to do that.

Gen i'm sorry your dealing with addison's that is such a tough disease on top of everything else you have. I wish you luck and gentle hugs as you also find your new normal learning everything you need to learn.

Gentle hugs for our sisterhood. Love you all!

***** Group Hugs *******

Gen: It is so good to hear from you.

It is said that President John F. Kennedy had Addison's disease. Frankly, I cannot see how anyone with Addison's would have the energy to be President of the US. Knowing this, it makes me admire him more.

I visit a support forum on MDJunction. It is a small group (about 4-5 people at any given time) but the experience and advice offered is invaluable. Especially on strategies for dosing and timing of replacement corticosteroids and up-dosing for times of added stress or illness. The site: www.mdjuction.com The group: Hypocortisolism. (There is also an Addison's group but the foot traffic/participation there is non-existent)

Smashms: I am glad to hear that you are on the rehabilitation unit. I imagine that your days are pretty full with PT and OT. I hope that the therapists are responsive to your needs. Set small and achievable goals and work from there. Honor your need for rest.

xo Karen

Well i still had a pretty high fever for me this am at 101.6 so they started me on iv antibiotics for a presumed UTI. They also drew blood cultures and will be on the iv antibiotics till they come back. However since starting the iv antibiotics the fever has broken i believe. No therapies today because of the holiday.

(((((((((smashms))))))))))))))
Hopefully your temp. is now normal and you are doing well on your therapies.
TGH

Temp is now back down to normal they are finishing up 3 more days of iv antibiotics for an unknown infection. I also got a tentit e discharge date of next tuesday. I think that is pushing it a bit but we will see i was thinking more along the lines of next friday. But again the leg is getting stronger and i am able to do some simple things with my hand and arm again. No where near the strength that i need but it is getting there. Going to be a very slow process. My fingers are not working so well still either but they are also working on those as well.

Smashms:
Glad to hear that your fever is down. I imagine that the fever was draining your energy reserves even more.

How is your kidney function? Are your laboratory values showing improvement since the acute dehydration?

Try not be discouraged about the slower rate of recovery of your arm/hand. The arm/hand typically shows slower recovery than the leg, as movements of the arm/hand involve a higher degree of fine motor control.

I hope that the therapies continue to help restore function to your muscles.

You have our collective thoughts and prayer,
- Karen -

As far as i know my kidney functions are back down to 1.2 which is my normal. They are checking them almost everyday while here in rehab as well and they have not increased again since. Everything remains stable since. Today is really the first day my energy is somewhat normal as well. Which is good. Well i am off to therapy again.