What I snuck out and did today....

[rose]

Beth, thanks, and yes, I think we need to start a gripes thread, not so much pity party, as, a this just sucks and we know it thread!

I finally caved and googled it a little, some about MS came up, but it really does not fit, and I've shown no demyelinatiion or sensory problems with any of my tests.... I'm not allowed to wear contacts for a few days, and I'd swear I have a blind spot in my vision, I keep cleaning my glasses today trying to get rid of a spot that does not exist. My doctor said she really did not understand what she was seeing, but there was something going on with my left eye. Maybe the headache really was glaucoma related but that should be my peripheral vision affected..... I guess eventually I'll find out. They put so many drops in my eyes while I was there. I think it was over 12 different types, there were the pressure drops, the staining drops, then the "trying to reverse the allergic reaction to the staining" drops, and then four or so different ones before the laser. So, for a while I had no more pain, and thought I was cured, but gradually it has come back. As I know that pain and the vision problems are not usually associated with ALS, I just wonder what is next..... you know the thing about this, is its not like its " Love Story" I'm not 28 and so young its tragic, I'm just a middle aged broad that wants to have a normal life!

 

[rose]

Barry, yes I'm hanging here, no interest in finding any tumor forums lets go for the soup! We can compare notes.

 

[lydia]

Hey Rose, just wanted to let you know that I am sorry for all the *stuff* you have to endure but also that even so...I love how you can describe it all with what unbelievably seems like you have a big grin on your face. And Beth too. You guys are always "still standing" no matter what comes your way. As if the fates are playing some nasty-ass game of dodgeball with you, but to no avail. You are still up. And winning.

This is probably just me, but I don't get the slowing down bit of the digestive system, if that is what you are describing, along with the taste and swallowing issues. Is this something peculiar to you (because that is just your darn luck?) but not a typical experience...?

and c'mon....you *know* you asked for the botox; admit it!

Lydia

 

[Zaphoon]

I love the taste of coffee. If my taste buds should start to go on the fritz, I am prepared to double up on the strength of the coffee and eat it raw if necessary.

 

[rose]

:lol::lol::lol: Lydia, I really had to bite my tongue about the botox. Don was sitting right there with me for my appointment, and he was my saving grace, I had to behave myself. (he told me later that I didn't ramble on too much, and he was proud of me LOL) Plus, this doctor gave me his personal email and cell number, and he said how he usually didn't give them out, but under the circumstances I would need to reach him before my next clinic visit.... it was all I could do to keep the feminine wiles in check after that, I mean really, just a few jabs right between the eyebrows would do it for me

RE: the gastroparesis, it is not common, but also not unheard of for those with ALS. It is a different type of muscle, smooth rather than skeletal. However, it is also the 10th cranial nerve, and this nerve has been most affected of all so far, from my vantage point.

My doctors have explained it to me as even though ALS is a disease of the motor neurons it does not always limit itself to just the motor function, it is still a systemic disease.

Now, with the new #@*t going on with my eye, I of course wonder if it is somehow connected, but I'm not thinking it is.

Zaphoon, I really can't taste coffee that well, but, we have a super duper espresso machine, and that I can taste! I have at least 2-3 cups every morning. In fact, I have a scheduled delivery from Starbucks every 6 weeks of the espresso pods, so there is no danger of a morning crisis, at least not one related to lack of the java!

 

[PDaddy]

Sounds like you have everything under control "Rose"! ... wish I did..

 

[sdsyd]

Rose-

You are always so supportive and encouraging to others on the forum. I agree with Beth- how about we let the winds of change BLOW like mad and send some AWESOME things our way. Hang in there, girl.

Love,
Cindy

 

[rose]

Cindy, We're all hoping you got some of those winds of change! Have you had the lumbar puncture or an IVIG treatment yet?

Pat. in the meantime, while you're working on getting your control, maybe you can have a talk with ktmj about the bra thing (as this is an area you've expressed interest in, although not with the masculine version). Try to help him see that if one does wear a bra, it can't fit properly if it is tucked into the speedo..... 8)

 

[Zaphoon]

I'm having a very difficult time envisioning the bra/speedo combo.

 

[ktmj]

I'm not Kim, as long as it is on one of these beautiful ladies here.

On you though - no thanks.

 

[Tfisher]

My mom uses the same plunger type, I think I'm going to try to do a few plunges for her a day in addition to her waiting for gravity. I think she gets sick of the process and sometimes only takes in 2 cans a day instead of the 3 or 4 she should be doing, then we're just asking for trouble with dehydrating and so on trying to take over. I plunged one last night and it was probably under 10 minutes, she doesn't seem to have any trouble taking it in that quickly either. My mom also just tucks her tube in her pants, are you guys wearing hip huggers or something?

 

[rose]

Tfisher, How much actual water does your mom get via the tube? Is that something that you could do? It would seem that even if she had a more difficult time tolerating food going in quickly, that water would not be the same, and the more hydrated she is, obviously, the better, and the quicker she could digest the food part.

Re: the boys in their hip-huggers.... I have this awful image in my head of polyester hip huggers, with the edge of their day-glo speedo peaking out over the tops! ...

 

[Tfisher]

She takes in about two full tubes for each can of food. She takes in some liquids by mouth but before she had the peg placed she became a bit dehydrated so the tube was a big help but just kind of a pain for her sometimes.

Oh yes, that would look charming peeking over the top!

 

[Al]

I don't know who closed this. I'll try to unlock it.

AL.

 

[Al]

It may be fixed now.