More hugs, Erika.

KerOpi, Ampyra sounds like a real wonder drug. I will have to look it up to see what it is, as I never heard of it. It's cruel that you could not get through to those who should get it for you--and the same thing in Erika's case. Are doctors becoming more and more overworked because of cut backs? I do not know.
We have not had specific cutbacks here, that I know of, but my great pcp leaving town meant I had to go through three pcp's to find one which is both close enough to home and suitable to a person with my ailments. The first one I went to (in the same office as the old pcp who left) didn't want to deal with my rare diseases, wanted to depend entirely on hematologist in another town....that won't work in an emergency, must have a local doctor willing to be semi-educated on the rare diseases. So I did a lot of driving, crying,
and persisting. Still don't know if the new pcp will be good but he has enough sense to know he needs to "look into" things that are "different" in my case.

I've had to live like this, in respect to medical care, for many years, so the changes in "unavailability" are not as obvious to me, possibly? But we hear all the awful stories about how cut backs are affecting care. Now I am seeing up close with Erika's and KerOpi's problems. Both situations sound like they are just not bearable.

I don't understand what is going on.

I'm feeling weaker and weaker every day. Is this something that MS does? Does it do bad things like that, that quickly? Daily worsening?

I can barely walk at the moment. I'm freaking out. My dad told me to go ahead and go back to my doctor that's out-of-network. He'd pay for it. My dad and my aunt (the nurse practitioner) both thought that it would be better for me to go see someone that I actually know and have seen before, rather than trying to find a new doctor during a big flare like this. I can't see him till thursday tho. Hope I can make it that long.

I talked to my neuro the other day, and he'd told me to go see either my regular doctor, or try to find a new one. So, yeah, I'll go out of network just because I already know the guy. I think my neuro wants me to get checked out for anything else that I could have other than the MS.

noticed something tonight.

my legs are really swollen. I bet that's got a lot to do with why I'm feeling like crap. I put the EdemaWear on. My aunt used to work for the doctor that developed EdemaWear, and she was one of the people who helped keep track of the research for it when they were doing their studies. She keeps a stash of EdemaWear now. I need to see if she'll share some of her stash with me, mostly so I don't have to go to the pharmacy and pay $18 for a new pair.

Hope you feel better soon Erin.

I slept with my feet elevated last night. Felt a bit of a difference. I woke up two hours in, with my feet and hands both tingling. It was a good tingle, kind of like stuff waking up. Or at least it was giving me that impression. It just felt better than it did before.

Feet weren't as swollen when I woke up too. In the middle of the night tho, I turned on my side, and ended up with one leg not as elevated as the other, but the swelling in my feet and ankles was a lot better than it was when I went to bed. I also felt better around my waist and back. So, I do think I've got some edema going on. Gotta talk to my doctor about that on thursday.

oh, and I got a phone call today from my physiatrist. The one that is out of network for me now. They wanted to know if I wanted to try a trial of the electronic gizmo thingie that goes around the calf of my leg and would send electronic signals to the nerves in my foot to tell it to move. I'm a little worried about the cost of that, but this is just a trial to see if it would work. I told them yes. My dad said he'd pay for that visit too, because if the gizmo works, I can try to get it from whoever my new physiatrist would be. (the gizmo is the Bioness gizmo for drop foot...not sure of what model it is) At least I would know if it works or not. Hoping that it does. I'm really starting to hate the AFO.

So, maybe that's something good. Hopefully. Really hope that it works. I'll probably know by this time tomorrow if it'll work.

something good happened tonight.

My dad gave me one of his old Macbook Pro laptops. My computer desk looks like a mini Apple store at the moment. It's covered in Apple tech. (three computers, two ipads, an iphone, and a ipod)

My dad wasn't using the computer, and I haven't been feeling good lately and kind of needed a distraction. I have to figure out this computer, because it's been having some weird issues. My dad likes to change things and delete stuff he shouldn't. I get to keep the laptop.

My dad seems to like to keep me distracted or entertained when there's an MS thing going on. I did not think he was serious when he said I could have it. I thought he was kidding.

I'm giving away my two Windows laptops that I haven't used since I embraced Apple tech to a family member or two now. It's time for all the unused but still useful computers to get regifted to other relatives. Or I'll end up donating them somewhere.

omg

woke up to something like stomach flu.

cursing the name of whoever gave me this. Can't go to the appt for the electronic thing now.

I have some zofran. (anti barf medicine) My dad said I'd be ok taking it. hope he's right. hope this doesn't last long, I can't even play with the new computer.

going back to bed

edit

took some zofran, fell asleep for awhile. I woke up a few minutes ago, and feel much much better. I think the zofran finally kicked in. I'm just being really careful with doing anything like moving around. Still feel a little icky tho. Just not as strongly sick feeling and horrible as it was when I first woke up this morning.

I might not be going to the appointment with my regular doctor today. We're supposed to be having a blizzard today, and it's supposed to be thundersnowing and be several inches deep around the time that the appointment is.

I was able to reschedule the appointment for the bioness thingie (the electronic leg gizmo) It's now on wednesday. I could have done it tuesday, but that's my dad's birthday. Didn't want to be mean and make my dad drive me all over the city on his birthday.

and whatever was making me sick on wednesday morning to the point that I thought I'd gotten some sort of horrible virus. That went away sometime around mid afternoon. Which is making me wonder what it was, because I'm fine now. The only thing I can think of is that just before I started to feel sick, I was laying in bed, with my feet up on a wedge pillow. The doorbell rang, and I went to see who it was.

That's when I started feeling sick and dizzy. Wonder if I stood up too fast, or if something weird is going on with the feet swelling and it's messing with my blood pressure. I've had something similar happen several times now like that. If I get to the doctor today, I'm going to tell him what happened, and see what he thinks.

it took me all evening, but that laptop my dad gave me is all set up now. I figured out how to erase my dad's stuff from the computer and get it set up for me. I thought I'd need a recovery disk, but I called Apple, and a tech there told me to download Mavericks, the new OS for Mac, and once that was on the computer, I was able to use an online recovery file to reinstall the operating system. Totally thrilled with how easy it was once he told me to download Mavericks.

so the computer only distracted me for a day. I am actually using it right now, and I'll probably be playing with it and fine tuning stuff. I need to reorganize my computer desk now. It really does look like a display at the Apple Store with a the various bits of Apple tech on it.

promised my dad that I'd get rid of my two Windows computers now while there's still a chance that they might still be useful to someone. Wondering if my boyfriend needs a new/used computer.

well, I went.

I lost a few more pounds since I was there earlier this month. (I'm not trying to lose weight). My blood pressure was 130/90. When I was there the last time, it was 115/80 (or something like that). I talked to him for awhile. Told him what's been going on.

He took a bunch of blood. I don't remember everything that he's going to check for, but the things I remember him mentioning are CBC, thyroid and adrenal stuff, kidney and liver. He was going to see if I'm anemic or not, and he was also going to check my b12.

I asked him to check the b12, because several years ago I had it checked, and it was 345. Which they told me at the time was fine, but I've been reading that b12 that low wasn't all that great for people with MS. He thought it was a good idea to check b12. I'm pretty sure he knows more about MS than some other family doctors do. His dad has MS. So, when I tell him that I'm not feeling good, he listens and doesn't blame everything on the MS. (this is why I'm so angry that my insurance won't pay for me to see him anymore. He's the most understanding doctor that I have right now other than my neuro)

I know he wanted to see what was going on with my thyroid because I have had a few steroid things over the past year. Think I had some oral steroids about a year ago. A big Rx of it, but I also had two of the lower dose steroid packs in December for that problem with the frozen shoulder. The steroids were the only thing that stopped the pain in the shoulder. So they gave me those a couple of times. Then I had about 5 shots of cortisone in my shoulder in December and January. Three in one shoulder, two in another. That's a lot of steroid.

just hoping that whatever it is that's making me feel bad is something that's fixable. I'm just so tired right now, it's not even funny. I keep falling asleep trying to write this. I feel like I got no sleep last night. I am more than exhausted.