Small Update
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October 5, 2009 at 6:34 pm
It’s been awhile since I’ve posted, for various reasons, and can I just say I am totally tired of getting sick? 😀 It seems like everybody I know is sick, everybody I run into is sick, and I’ve been sick a lot myself. Ugh. You would think I’d be immune to all this stuff by now. Oh and my poor husband had to slip in an appendicitis in between our rapid fire, repeating illnesses too.
Anyway – before this excruciatingly long run of illnesses I was doing pretty well, most of my peripheral nerves had healed and my strength was returning. I credit changing to the once a week treatment for that – the side effects aren’t nearly as crushing as they used to be and my body appreciates that. My cranial nerves are better but the right side is still very weak, I still can’t chew, can’t focus my eyes and my sensitivity to sunlight is still very bad. My autonomic system was getting better until I got sick again and again, it went back about 6 months but it’s starting to get a little bit better again, finally. I’d like to spend Christmas not having to worry about how much liquids I drink… :rolleyes: The summer of sickness set me back about 6 months overall but at least I know there can be improvement – that certainly took long enough to see.
I think the biggest improvement is my own knowledge of my disease and it’s patterns. I can now pretty much predict what I will feel like on a given day – aside from variables like getting a cold – because my schedule is so predictable now. My treatment schedule runs 4 weeks, weeks 1-3 I get IVIg and I take week 4 off. I do go downhill during that 4th week, however I have to take that week off to give my body a break, especially my kidneys – they hurt a lot after my 3rd treatment. My side effects are much less though they haven’t entirely disappeared – I still get the meningitis like headaches, still get the big belly, and occasionally I get some fluid build-up in my lungs if I’m lying down during treatment. I find I have the fewest side effects if I change positions frequently and walk around every half hour or so… that seems to help distribute all this extra fluid and keep it from picking one place to go – like my lungs. 😮
I hope everyone is doing well and I hope to be checking in more often now. Have a happy day!
Julie
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October 5, 2009 at 7:16 pm
Hi julie!!
Nice to see you back. Things sound like they are looking up overall, not considering regular virus’s. I had the doc switch Kevies treatments because of his adverse reactions as well. his body likes it better too! As well, we have gone from 125g to 70g. We will see how it goes, it has taken a while to wean down to 70, but so far so good!! Things are a little different on the site, not as many old timers. Hey, we are both old timers now!!! how are the frogs and the rest of the pets? Keep in touch! I missed you!!
Dawn Kevies mom -
October 5, 2009 at 8:14 pm
Hi Julie !
So sorry you’ve been having a rough time with things.
Glad to see you are back…..
Stacey
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October 5, 2009 at 9:02 pm
Howdy Julie,
Great to hear from you 🙂
Sorry you haven’t been well – I hope you’ll see some improvements soon!Kazza
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October 6, 2009 at 2:24 pm
I’m glad you posted. This board needs ya!
Sorry you’ve been so sick. But I’m glad you are on the mend.
Gotta run & get in the shower.
Kelly
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October 6, 2009 at 4:34 pm
[QUOTE=Dawn Kevies mom]Hi julie!!
As well, we have gone from 125g to 70g. We will see how it goes, it has taken a while to wean down to 70, but so far so good!! Things are a little different on the site, not as many old timers. Hey, we are both old timers now!!! how are the frogs and the rest of the pets? Keep in touch! I missed you!!
Dawn Kevies mom[/QUOTE]That’s going to be my next step Dawn – I need to get more of my functions back after my recent marathon of fighting colds but once I am stable again I’m going to see if we can cut back on the dosage. It’s either that or go with the subcutaneous route – and I’m seriously considering that method now to minimize the rapid influx of IVIg. My body still does not appreciate the heavy proteins and I still get kidney pain, meningitis and so on.
Can you believe those little frogs are not only still alive but also still trying to reproduce? I finally looked up how long they live and I think I’m in deep trouble – they are barely out of their froggy-teenage years. 😮 All the rest of the menagerie are fine – we have a few more now and then as I seem to have become the Dr. Doolittle of the entire county… but it keeps be occupied and I am certainly never hurting for company. :p
I’ve had a lot of trouble seeing lately – mostly due to my light sensitivity – so my computer time is quite limited. I will try to be better about coming on here daily but if I miss some time you’ll know I’m just having trouble seeing. 😮
Jules
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October 6, 2009 at 4:40 pm
[QUOTE=Kazza]Howdy Julie,
Great to hear from you 🙂
Sorry you haven’t been well – I hope you’ll see some improvements soon!Kazza[/QUOTE]
I am seeing some improvements but you know how it goes – you are at about 35% then you get sick and go down to 25% and it seems like it takes [U]half of forever [/U]to get back up to 35% again. Just having been better than this gives me hope that I will get back there again. As usual my eyes are giving me the most trouble – both the double vision and light blindness. Somebody shined a flashlight into my eyes 2 months ago and I still have one blind spot that is lingering. I had 3 up until last week then the other two faded. It’s so annoying – I am NOT a night person! Argh! And while I did get to chew on a piece of steak a month ago I haven’t managed it since then – OK I won’t go into details cuz it’s kinda gross but I still crave chewing. I had a nurse recommend chewing gum to strengthen my jaws – HA HA HA – I grew up being told that chewing gum is NOT lady-like so I’ve never done it… not that I claim to be a lady but sometimes those things your mom told you stick with you like a piece of gum. 😉
Julie
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