[OhKay]

Well, I got the laundry done. It was quite the spectacle. One thing I can say for myself is I still have a lot of fight left in me. Of course I'm junk now tho.

There are a lot of things around here that that could use some attention, but I think it's in my best interests to just relax today after what I went through yesterday. I'm already waiting for 2 bottles of mag. citrate to work, and that's bad enough.

The gastro NP called me yesterday. She told me that she didn't see any point in me coming in to see her on the 14th because there's nothing she can do for me. She mentioned referring me to a motility specialist and/or ordering testing... all of this would be in Boston of course. These are the tests she is talking about... thrilling, right?

Anorectal Manometry:
https://www.hopkinsmedicine.org/gast..._Manometry.pdf

Defacography:
http://www.motilitysociety.org/wp-co...-8-15-2005.pdf

[Mari]

Wow, Kay.




M

[OhKay]

I took 2 naps yesterday, and I didn't have any problems falling asleep last night, or sleeping through the night. I guess I really needed sleep. The 2 bottles of mag. citrate worked very well, so I'm feeling much more comfortable today, for the first time in quite a while. I think I'm dehydrated tho because I'm feeling off.

I have my Tysabri (MS med) infusion today at 11am. It's supposed to take 2 hrs, but always takes longer than that, especially if I get the lazy nurse. I really need to go grocery shopping, but by the time I get out of there, I know it will be too late in the day for me to do that.

I'll have to go somewhere to pick up milk, TP, and coffee when I escape the hospital today, and make my regular trip to the grocery store tomorrow.

It's been rainy, windy, and in the low 60's for the last couple of days, but out of nowhere, it's going to be 85 degrees and sunny today!
I was happy to find a couple of pairs of shorts and a pair of capri pants that fit me in my dresser. Thank God I don't have to go shopping for summer clothes (at least not bottoms)!!!

[OhKay]

My appointment for the Tysabri infusion was for 9am Wednesday. I don't know why I thought it was at 11. I had it written down in my notebook and had reminders set up for the correct time. I didn't realize my error until it was already 9:30. When I called them to apologize, they said they would take me anyway. I ended up with a really fast nurse, and was in and out in 1 1/2 hour.

I had a really, really hard time walking through the hospital. I need PT. I keep fighting with myself over it tho. I just need to bite the bullet and contact my neurologist to ask for the referral. I will make myself do it today.

Wednesday night I passed out on the couch again. But I didn't wake up until 5am... way too late to take my night pills, so I went through withdrawals yesterday. I like to smoke an hour or two before bed to stop the muscle spasms earlier, but I really should just do it right before bed so I don't miss those pills because it's NOT fun.

I never got to the grocery store because I couldn't drive and Corey wouldn't drive me. He worked second shift yesterday and got home around 11:30pm. He has today off, so he will be home to carry in all the bags when I get home... when he gets up. He drank his ***** off after I went to bed...I don't want to wait too long to go to the store tho because it's going to be hot and humid today.

I'm obviously allergic to something on the kitchen/living room/deck side of the apartment. Yesterday, I suddenly started getting fierce hay fever symptoms and had two mild asthma attacks. I ended up taking a generic Allegra I had on hand... I can't believe how well it worked!!! Finally, one f***ing problem easily solved!!!

I do have a fever this morning tho. I'm feeling off, and have a sensation of a fullness around my throat/neck, but my glands don't feel swollen, and my throat isn't sore. Weird.

[bizi]

I am sorry you have a fever and are feeling off.
I never know what to say about coreys lack of help for you.
(((((HUGS))))
bizi

[OhKay]

I finally contacted my neuro to ask for a PT referral. He responded right away that he would send one right over to the place I always go to. I also asked him if it was okay to try taking a low dose of Baclofen in the afternoon to see if it will help with the spasticity in my legs because it gets worse after I do some walking and when I get tired (I'm too worried about sedation to take it in the morning at this point)... he okay'ed that.

Baclofen is the med I tried restarting because the spasms in my legs at night got unbearable, but it interacted with my night meds at a low dose, and I started sleep walking, falling asleep on the toilet, etc, so I smoke medical MJ at night instead now. But I don't take the same heavy meds in the morning, and nothing in the afternoon, so I thought it was worth a try. I took 5mg, a very small dose, yesterday at 3pm, and I noticed a little difference. So, I will try increasing the dose to 10mg this afternoon.

I finally got to the supermarket yesterday. Walking through the store was brutal, but I couldn't put it off any longer. I didn't get home until 2:30 because I didn't leave until Corey got out of bed at 1:30. I wanted to be sure he was up and ready to carry in ALL the bags.

I'm feeling much better today... my fever, which hit 101.5, and the feeling of fullness in my throat are gone. I wonder if it was an inflammatory response related to my allergies, which seem to be under control now... IDK. One less worry now tho.

[mymorgy]

so glad you are feeling better. is there anything you say to yourself when you are going through such horrible rough patches to make you feel better?
love
bobby

[bizi]

You are such a strong lady. I admire your determination.
((((HUGS))))
bizi

[OhKay]

I really try to focus on one thing at a time, and I try to change HOW I think about things when I'm having a rough time, and that usually helps (at least temporarily). It can take some time tho, and it seems like I'm constantly doing it.

I didn't take any Baclofen yesterday because I took an early nap. I didn't want to take it before I laid down, or after, because I thought it would be too close to when I take meds. I hope to try taking the 10mg dose today.

I had to look for something to wear for pool PT that would cover up the scars on my wrists and arm. I found a long-sleeve swim top (called a rash guard) I like on Amazon that got good reviews, but none of those things are lined, so I had to search for something to wear under it so my headlights won't show. That was harder to find because with my shoulder problems, it's difficult to pull things over my head, and I didn't want to buy something obscene or spend much. Anyway, I found something, and I hope the things I ordered work out. They should be here on Tuesday. Thank God I already have bottoms that fit!!!

[bizi]

I hope the swim wear works out for you kay.
bizi