Check in for the week of Oct 1st
 

I hope that all of you are doing well. Here in the holler the sun is shining and the leaves are just dipping their leaves into fall's color.

My husband is building a new shed so that we can move some of our excess outside and, hopefully, make room for kids this Christmas.

Surgery is set for the 24th, but I have great reservations about it, even though I can do little more than sit and it gets worse every day.

Enjoy the beautiful fall weather! Take a walk in the woods. You won't regret it.

Mama

The leaves are changing quickly here, but it has been raining so much it has been hard to take a walk anywhere. I brought in all the peppers and green tomatoes today so I guess fall is here. Well, next Monday, the 9th, is Thanksgiving.

So you have a date for surgery Kathy. If you cannot do more than sit, you have to do something about it for sure. We will talk before then.

Hope all is well with everyone else.
Shirley

Hi guys. Couldn't get back in using my old i.d., so am now Marie. :)

Beautiful weather here lately.......sunny and in the 20's. Absolutely gorgeous.

Nice to see the board up and running again.

'Marie'

Hey, Marie, who were you in the old forum?

mama

I am betting Carol - cloclo. She uses celcius temperatures and the weather in B.C. has been beautiful!
Shirley

Still here.... I may be stuck here as I cannot get onto the old Braintalk forum. Aside from Shirley and I, is anyone else having trouble????

You're so right, Shirl. :)

Strange that you guys are having trouble getting into the old forum. Even though my post there registers as being my first post, it recognized my old name (Mia) and password. It was this forum that wouldn't let me use my old name. Odd.

Marie or Mia or Carol or Cloclo. :confused:

It won't let me in, either. I sent a message to get it fixed.
mama

Lets hope we all find our way back or we are here at Braintalk 2 forever.......

I had to reregister at Braintalk. Now I am in it appears.
Shirley

Hi,
I am feeling like someone with a dual personality...old brain talks, new brain talks...which forum to post in, etc... but here I am anyway. It is a beautiful Fall day in Minnesota. The sun is shining and the leaves are changing.

Saw the neurologist today and he approved three more months of IVIg every two weeks. I have Myasthenia gravis but he continues to look at other possibilities as I have more and increasing weakness on my left side...so i know that I probably should only post in autoimmune, but since no one is ever there i am interloping here.

I hope everyone has a good week.
Gabe

I have had a "medium" week. Nothing too horrible... and certainly better than being in the hospital yet again the week before last... but just not feeling myself. I have a cold and I think that is setting off a bit of mild metabolic decompensation... I feel weak and am having a lot of muscle pain and dysfunction. My urine dips have been positive for "trace" heme (as a proxy for myoglobin) all week, but haven't gotten more than "trace" so I haven't gone in to get labs checked. My brain feels "foggy" too... I call it "metabolic fog".

So I am just trying to do what I have to do in the moment, from moment to moment, and not dwell on the fact that I am not feeling 100% or ruminate about my body and how much it sucks lately.

I did get a referral to the pain clinic, and finally have an appointment, so I am looking forward to finding better solutions to both my chronic pain and my acute pain that I get with "episodes."

I also heard back from my genetic counselor yesterday that she was able to start the process of getting approval for me to have a fresh muscle biopsy with Dr Shoffner in Atlanta. So hopefully we will find out relatively soon if my insurance company (an HMO) is going to deny me. I really hope not, because both my neuromuscular doc and my metabolic doc said that I really need it.

Also, my PCP and I had the "port" conversation again, and this time he offerred to send me to a surgeon to find out about getting long-term access so I don't need to keep blowing through all of my veins every time I am sick. I kind of chickened out, though, and so for now we are not doing anything about long-term IV access.

Oh, and I finally have my nephrology appointment on Monday (about the metabolic acidosis... proximal renal tubule dysfunction). This is a good thing because I have been waiting to get in there since July, and my bicarb is still low (like 17-18), and metabolic acidosis is one of the few treatable things going on with me right now... except my PCP doesn't feel comfortable managing it himself, and my metabolic/genetics doc doesn't either... nephrology does it all the time, though, so hopefully we will get some headway there... the acidosis and the pain are two things I would really like to have a good plan for by the end of the month.

Lex,
The dog is just bringing you fertilizer for your garden LOL!

Lex, why do we always have similar sx? It's kind of wierd. I hope that yours resolves its self.

mama