New Treatment Protocol

    • Anonymous
      December 20, 2008 at 6:14 am

      Well I had my neuro visit yesterday and I’m still kind of in shock that I got everything I wanted. He agreed to changing my treatment schedule from 3 days in a row every three weeks to one day every week for three weeks, then take a week off. I can’t even tell you how relieved I am, my body can no longer tolerate two days of IVIg in a row but I still need the IVIg as things get worse before treatment. My neuro said this is actually the ideal schedule but most people don’t want to do that because of the inconvenience and/or insurance companies don’t want to pay for treatment that often so they bunch it all up once a month or every six weeks. That seems kind of stupid to me but then again I’m not an insurance agency. My neuro says he is familiar with the big belly – it’s due to the protein overload and the viscosity of the IVIg. He says drink coffee – lots of coffee. OK! ๐Ÿ˜€ In addition to slowing down the rate and changing up the schedule… he says all of the above should help so maybe I’ll be able to fit my rings on again next year sometime. Whew!

      He also says these new symptoms I’m having with my fingers are not neurological, more likely rheumatological – Reynauld’s to be specific. So I’m off to the Rheumo again early next year to track down this new little issue. At least my hands are patriotic, red, white and blue. ๐Ÿ˜‰ But I’ll be darned if they don’t hurt like the dickens – I sure liked it better when I couldn’t feel anything.

      So today I get my one day of treatment, starting in about an hour, and I’m just realizing that not only is the house a wreck from my husband’s band practice last night but also the heater apparently quit working again because my fingers are turning white and cold. Crap – this is the fourth time this month that sucker has quit working. Apparently the oil we are getting now has been “cheaply refined” to get it out into production quicker and therefore it has more impurities and thus clogs up the filter more often. Great. Oh well, off to go bang on the heater.

      Have a happy holiday ya’ll – I’ll write more later when I’m not so cold.


    • Anonymous
      December 20, 2008 at 1:25 pm

      Hi Julie,

      You sound so humorous, I enjoy hearing what you have to say. The once a week thing doesn’t sound bad that way everything averages out nice, but more holes get poked in you, right? the week off is a bonus. Your on home care too?

      So when the band is over playing maybe your banging on the heater will be like the final instrument to compliment the arrangement, like this thumping bass with the band. LOL.

      I hope things continue to improve for you Julie. You seem very Spirited no matter what.

    • December 20, 2008 at 2:53 pm

      Things sound like they are going on the road to positive!!! I am so happy.
      Dawn Kevies mom

    • Anonymous
      December 21, 2008 at 12:50 am

      Julie, I agree with Tim in that you are always well spirited and I enjoy what you say, too. You get alot of IVIG…I hope this works out for you. It probably seems like the nurse is always there.
      I always worry that the house is a mess when the nurse comes, too. I do make sure it’s picked up but I’ve learned from you and the others here…so what if the house isnt perfect.

      What kind of music does your hubby play ?

      glad you are doing good.

      Merry Christmas.


    • Anonymous
      December 21, 2008 at 3:41 am

      Well thank you Tim and Stacey, that’s the best Christmas present anybody could have given me! Here I thought I was just gabby.

      OK, I have to continue the saga of yesterday because it just gets funnier… so after I quit typing I went down and kicked the heater, that didn’t work, so I did what you are supposed to do and hit the reset button which worked for 18 seconds. By this time my fingers are looking like candy canes which is festive but uncomfortable so I clomp up the stairs seething and call the emergency number for our heater-dude. I get the answering service and the first question she asked me was “can it wait until morning” and of course I answered as politely as possible “NO” at the top of my lungs, which woke up the entire house but got my point across. So eventually they reach a human who reaches another human who agrees to brave the freezing morning to come check out my heater – again – for the fourth time this month let me remind you. And it turns out it’s the SAME guy that has come all the other times. By this time we are on a first name basis, I ask about his kids, his Hummer (?????) and whatnot, and by the way he is at least 80.

      Meanwhile, since I had a house full of people left over from band practice that I just woke up I start whipping up pancakes and bacon, coffee etc. And I’m still seething at the inconvenience etc. etc. Just as I finish cooking the heater-dude shows up and two seconds later my nurse shows up. Now we have grand central station in the kitchen with me getting treatment, band folks getting breakfast, the heater-guy getting coffee and so on. Entertaining when you are on Benedryl – I felt like I was watching a slow motion soap opera.

      So while I’m getting poked and dripped, the boys are scattered eating and heater-dude is flying in and out of the house literally running back and forth to his truck to get parts and so on, and did I mention he is at least 80? He comes upstairs just as I’m heading into the kitchen for a piece of bacon and holds up this contraption to me – he says “wellllll honey, here’s your problem…. your things broke.” I’m sorry but I just lost it, I laughed so hard I almost peed all over myself. Then of course my husband cracked up because he knows where my mind went, and then my nurse, and the flute player start laughing and the poor heater-guy went beet red and scooted out the door so fast he left a trail of paper flying after him. :p There are a lot of ‘things’ broke on me… but fortunately none of them have icky wires hanging from them.

      So after my one day of treatment I feel terrific as usual, it’s the second day that kills me and with this new schedule I won’t have anymore second days. My fingers even feel better, down to only a small patch of white. I’m so excited and happy I’m going to listen to George Winston all day and decorate the house… might as well since we’re in the middle of an ice storm. Keep your fingers crossed we don’t lose power, sure would be a bummer to get the heater fixed and then lose power. ๐Ÿ˜ฎ

      Stacey, hubby and band play stuff like Neil Young, CNSY, Dan Fogelburg, Steve Winwood, Eric Clapton – stuff they have been playing together for the last 30 years. Some originals but mostly loud rock and roll – I don’t know what possessed me to get him the PA system… now I can hear them all the way inside the house when they are playing in the barn. :rolleyes: But as I tell him and his buddies – he could have worse hobbies. ๐Ÿ™‚

      Tim, I don’t mind the pokes because I have very little feeling in my left arm, I usually can’t even feel it when he puts the needle in at all. A small bonus, or silver-lining, courtesy of nerve damage.


    • Anonymous
      December 21, 2008 at 12:46 pm

      All at once w/a traditional little old guy [tho maybe big, you know what I mean] and witnesses! NO one would ever believe it if it’d not been seen by others! Soooo. where do you stand on the heat factor? Did he have THE ‘part’? Or, are you out in the cold?
      Suspense is just that – suspense.
      I do hope this new schedule will work better and that docs are able to zero in on the key issues. Could be that you have both a rheumy and CIDP issue. I wouldn’t be surprised, tho dealing with one thing is so much easier than many.
      BTW? Love your taste in your and hubby’s music! Makes me feel at least 10 years younger! At least!
      That sense of humor is special. That knack is what gets you and helps US get thru all that happens. Don’t lose it!

    • Anonymous
      December 21, 2008 at 2:11 pm

      Glad to hear about your new treatment schedule. Sounds like you may be feeling a lot better every week! That is GREAT! My mom has Reynaud’s. She has been dealing with it for years. Once the temps get below 32, she pretty much stays in the house…otherwise she finds her fingers turning white. I can only imagine how your fingers must have felt with the heater broken. That was a serious situation for you. Hope you keep your electricity — colder weather is on the way (if you get any of what we have this weekend!).

    • Anonymous
      December 22, 2008 at 1:28 am

      I know I’ve asked you this before, but I have to ask again. Have you ever seriously considered writing for a living? I would read everything and anything you write so please consider it. You are like a modern day Flannery O. Thank you so much for your humor and honesty. And congratulations on your new schedule. Good luck and I hope your “parts” stop breaking.

    • Anonymous
      December 22, 2008 at 5:59 am

      Well I got busy drawing Christmas cards yesterday (ok, I’m a little late, I’ve been under the weather – remember? and I usually don’t do them but I’ve been guilted into it) ANYWAY I got busy and I actually FORGOT that I’d had treatment on Saturday. For as long as I can remember I have felt side effects from the IVIg for a week or more after treatment and all of a sudden I realized it was 5:00, I was still awake, my belly didn’t hurt, I was sitting in a real chair and had been for 2 hours and I didn’t feel like a duck sucked through a jet engine. I was so confused I got up and asked my husband if I’d really had treatment.

      And TODAY I’m STILL doing just fine! And so is the heater, by the way… so far nothing else has broke on it or gotten clogged or just quit from being ornery. I’m not used to things being so good so I’m not quite sure what to do with myself… :p

      Thank goodness the heater is working, for now, because it sure got cold and I think the wind has found every little draft place it can in our house. You’ll be walking along all nice and toasty and then POOF get hit with a tiny blast of 10 degree air, in random places too – like your eyelid, or the corner of your elbow – so unexpected, so chilling, so totally spooky too! My dog Harley completely lost it yesterday when he got hit with a microblast from our “really needs to be replaced” sliding glass door. He was looking around like somebody goosed him and stalked all the way across the room to snap at his brother, who was sound asleep on the couch where he shouldn’t have been. :rolleyes:

      As for being a writer – I guess I’ve thought about it but not seriously because I have no ideas for stories and have a hard time sustaining a thought on some days. Plus I failed my freshman English class in college so that destroyed my confidence. ๐Ÿ˜‰ If I keep you all entertained and not thinking about being sick well then that’s plenty for me. As long as I’m not boring you that’s enough for me too!

      Have a fun day ya’ll!


    • Anonymous
      December 22, 2008 at 8:35 am

      You could never bore us.
      Our furnace quit working about 9:30 last night with -10 to -20 below 0 windchill. We managed to stay warm with electric heater and warming blankets. Husband went to buy an ignighter at 7:30 this morning and has it fixed now. House is warming up and the water did not freeze as we let it drip all night. Now that is a boring story!
      When you tell us something, doesn’t matter whether it is good or bad news, you have a nack of making it interesting with humor and details.
      Have you ever thought of writing childrens books, a good subject could be your dogs with some of the stories you have told us about them.
      Stay Happy

    • December 22, 2008 at 9:04 am

      Julie, I too enjoy your posts. Your humor is warm and honest for situations and circumstances that are not humorous. It reminds me to live every day my life to the fullest joyfully regardless of the hand we’ve been delt.

      You are a very good story teller. Your heater story left me with a vivid mental picture (and somewhat hungry … I love pancakes and bacon). I make multigrain pancakes most Saturday mornings.

      May your new treatment plan be the answer for you, may 2009 be a blessed year, and may your heater keep you toasty during the holidays.

      Thank you for sharing …


    • Anonymous
      December 24, 2008 at 12:15 am

      I went from 3 days in one week to 2 days in week and one day the next last summer. Big load off me as the 3 days in a row made me so tired and cranky. It took a while for my body to adjust to different infusion schedule.
      Tomorrow the nurse who I swear could be having an appendicitis and wouldn’t say one word concerning anything personal is coming-bummer.
      My right hand is giving me fits-it decides it doesn’t want to work at all and hurts too. Gets stiff and I put a Velcro wrap on wrist-that helps not to use it for 2-3 days.One culprit is holding my arm at wrong angle using the computer mouse-all the way up to elbow.
      So what kind of doctor should I investigate first?? Ortho?? Rhemmie? Pain doc who’s also physiatrist/rehab?
      I also enjoy your posts-sounds like fun at your house.
      The cold wave has my CIDP going wild and not much for sleeping when my chest port feels like a gigantic burning ice cube.

    • Anonymous
      December 25, 2008 at 5:13 am

      Hey just a quick update since I’ve typed so much my fingers are numb… I’m still doing great on my single dose of IVIg. Thank you all so much for your kindness and compliments. I don’t think of myself as particularly funny because I compare myself with my husband all the time who is REALLY hilarious. It’s no wonder my stomach hurts all the time, it’s hard to stop laughing around him. But then again he says I’m the one who makes him think of all that funny stuff so I’m not sure what that says about me. :rolleyes:

      Merry Christmas everyone! I’m going to go wake up the dogs and give them their Christmas bone!!!