When I was in the hospital, they gave me some medicine that is known to cause seizures. It was a last ditch effort for the bladder pain and issues I was having because of the surgery. So, one nurse was getting things ready in case I had a seizure since I've had small ones before. Another nurse was in there too and they were discussing the set up of the equipment. One nurse was trying to explain it to the other nurse and asking if it was correct or if she knew. Well, each room has a computer in it and one of the nurses goes over to look it up on the internet. So I told them, jokingly, that it really makes me nervous when my nurses are consulting Dr. Google. They both laughed. It was the image of the set up that they wanted.

BTW - The stuff worked fantastic!!! It's called B&O. It's belladonna and opium. It's very expensive though as they gave me a prescription for it after I was discharged. I had a hard time finding a pharmacy that had it on hand and when I did find one, my insurance wouldn't cover it and it was $300 for a 14 day supply. I didn't get it and just suffered through the pain and issue with a little oxybutynin.

Erika,
so sorry you're suffering...wish you could just drive to Mayo and get some answers from them...
I hope that someone somewhere can help ease your suffering. You're a real fighter, and that is so important in this fight against illness...

You should have eaten the sugar free JBs and then,
you'd still be passing the cheese until next week.

I took care of it this morning (not going into details for that,thankyouverymuch)

Called in sick to PT so that I could...take care of things...

Now I've just called my shiny new physiatrist for a follow-up to the initial visit I had with him about a month or two ago. I am going to pester him to help me get hand controls for my car. I've given up on ever driving my car normally again. I need to take the keys away from my dad. He's pretty much voluntarily giving up his keys, but I need to be able to drive, and soon.

My dad is going to sell his minivan, and we're going to just have my car from now on. (that Toyota RAV4 I got last June and then I quit driving in July). I'm getting our contractor for our remodels to build us a ramp in the garage. More room in the garage to get the right incline, plus the garage would be sheltered, and we're going to set up a little bistro table next to the ramp for my parents to sit at. Also putting up a ceiling fan in the garage, to keep things cool when we're all sitting out there.

darn...I woke up this morning, and I still have MS. (I was hoping it'd go away overnight) I still feel like crap. Still having walking issues. Still having issues like I mentioned in my previous post.

I'd planned on getting up earlier today to call my neuro. I set my alarm to wake me up. I don't know what happened, but I don't remember my alarm ever going off. It should have gone off three hours ago. About to call my neuro now. I'll bet he has a half day today, and has already gone home.

Erin,
I hope that you get through to your neuro and get some suggestions. Feeling like carp for as long as you have is not good. Sending .

I saw my PCP a little while ago. He said to double up on the Modafinal for the narcoleptic fatigue that has increased lately. I'm to take the one in the morning and another in the early afternoon when I need it. I'm hoping that will do the trick because by 2:00PM this body has been doing the nod; which is not good, especially when I'm working.

The Cracker-Jack box licenced specialist had ordered a slew of blood work, which all came back OK, like I told him it would, as most of it was just repeating tests that had been done a month ago. My iron is a bit low, but I've had a bit of bleeding going on from the combination of regional enteritis and Ibuprofen, so I'll be cutting back on the Ibuprofen as much as possible. I can't help feeling like I've wasted a lot of tax payer's money this week by seeing the specialist, having the blood tests done and also seeing my PCP today .

With IVIG off the table according to the PCP (and the specialist), I'm pretty much on my own with the joint thing now, because I refuse to take prednisone.
Honestly, I'm so done with these doctors, especially since they are all pushing me to try prednisone again. Both the specialist and my PCP have said I should try it and if my liver goes into conniptions again, that they will cross that bridge when we get there. Yeah...no thanks. Its my liver, and its me that will suffer the result, not them. I'll deal with the pain devil that I have now rather than the organ destroying one that I've had to deal with in the past.

About all that I can do is deal with the Sxs as they appear, and get on with my life. I've taken 4 days off from work to give the hands a rest, to get off of the Ibuprofen for a while and to try the increased dose of Modafinal.

I'm really hoping that in the next few days I'll be able to get out into my yard and garden to do something productive.
Venting - OFF. Stubbornness - ON .

With love, Erika

(((((Erika)))))

(((((Erin)))))

((((( Trish)))))

Doctors can be really annoying, when they say "try <medication you know won't work>, if there's a problem we'll deal with it then". Why don't they try it on themselves first. You know, for practical first hand experience with it.


I called my neuro, and of course I was right. He took the half day today. (he's the same age as my dad, so I'm not surprised he's taking half days.) I left a message for him to call me back on monday. I asked about getting an appointment, but he doesn't have any available until the 21st.

I have an appointment with the physiatrist next week.

I believe the neuro when he says that oral steroids are not good, and will probably make the MS worse, and cause other problems at the same time. It's just exhausting with the constant problems with everything. When I first got diagnosed, I got told that there's "all sorts of things they can do for MS". I'd like to know what those "things" are. I haven't seen anything that actually helps. No one will let me try the stuff that I've read about that seems to actually help people. (4-aminopyridine, or LDN)

My whine . . .ALLERGIES! Oh my goodness! They have been acting up so much lately. I dread this time of year. I broke down today and took an allergy pill. I just didn't want to go through another day with sinus pressure, runny nose, and sore throat.

Passing the whine & cheese . . .

My whine for the day.

My dad went to Burger King to get me and my mom something to eat. BK is entirely out of chicken strips! The whole city of Omaha...every BK is out of chicken strips!

The horror!