Your Replies

  • August 31, 2007 at 7:40 am

    Sometimes things in life can get so over whelmimg. It’s raining in Spokane this am and it fits my mood. I’ve always forced myself to have this positive attitude, but every once in awhile I think you need to have a melt down. As if the day to day trials we deal with while living with a chronic disease isn’t enough, sometimes life throws us a few sucker punches. Definitly go to your doctor and let him know how you’re feeling, not only the physical symptoms but how all of the stress you are under is making you feel.
    Stress and lack of sleep is horrible on a healthy body, it’s going to make one of us worse. Take care of yourself! Except any offers of help and come vent to us as often as you want. If you need to have a melt down go ahead, every once in a while you’ve got to let go; keeping it inside and over doing it is only going to make you feel worse.

    August 29, 2007 at 7:06 am

    I use to love the heat, the hotter the better. Now I dread the dog days of summer. I’m up now between 3:00 AM and 4:30 AM, out in my yard at first light to putter. I’ve a young man who the owner sends over to do any heavy work, my sole purpose any more is to keep the weed population down. By the heat of the day I’m in the air conditioned apartment napping on the sofa. A far cry from my former self. Everything about this disease is compromise.
    After one postponement I’m finally going to Nevada to see my son and my old crusher buddies at the mining town I use to live at. It’s taken weeks to prepare for the trip and I’m exhausted before I’ve even left town. But nothing is going to prevent this trip. Where I use to drive the trip down straight through now I’ll fly to Reno, stay the night and my son will drive the 4 hours to the small town the next day. My friends know I take daily naps and will take turns visiting as to not tire me out. Like I said it’s all about compromise, I can’t ride horses down there any more or go hiking but I can visit and sit in the passenger seat of a truck while we 4 wheel drive. Have to enjoy what we can do. Two weeks in the company of my son and good friends is what life is all about!

    August 24, 2007 at 7:56 am

    My neighbors just got a new kitten who lots like the tabby, he has found his way into my yard. Himself is about 17 pounds now and not impressed with the new kitten. Pretty funny yesterday as I was out weeding first ran by my moose of a cat chased by this tiny little furball. Brave he’s not!They’re so cute and if nothing else keep us amused.

    August 22, 2007 at 7:38 am

    That’s our Jeremy!!! Thankfully that’s how I found myself here and the rest is history as they say. Welcome to the site, I couldn’t be happier to have been led here. It’s like a port in a storm, the people are warm and welcoming, it really helps to have someone who can understand what you’re going through. I think you’ll be happy to have been led here also.

    August 19, 2007 at 7:59 am

    I have Lewis-Sumner variant, steriods don’t usual work but I tried them for about a 6 month period anyway. Was doing the solumedrol IV, 1000mg every 4 weeks. They did help a little but the screamin’ meanies I got with them wasn’t worth that little bit {not so bad for me I guess but horrid for everyone around me}. I did blood work constantly but the only real damage I received was quite a bit of bone loss {this was with calcium 600 D, 3 times a day and flosamax once a week}, and a twenty pound weight gain.
    I’m now doing 1000mg of Cellcept twice a day plus IVIg every 5 weeks. The only problem I have with the treatment now is the aspetic meningitis but as long as I pretreat before the infusion I can keep that down to a dull roar. I’m not out running any races but it’s kept the CIDP to where I feel I can handle it. Everybody is so different, it’s hard to know what to try and what not to. Good luck with what ever you try.

    August 18, 2007 at 8:38 am

    I’m with your son on self injections. I still can’t watch them take blood or put in the IV for my infusions. Can’t even watch it on TV. I suppose if it came down to having to I’d find a way to adjust.

    August 18, 2007 at 8:31 am

    I’ve learned to be careful of anything I put into my body from OTC meds to natural cures, with all the different meds I’m on. I got really ill from a Sobe drink, all it took was once. I’ve a great primary care and we decuss it first. She has me taking a few suppliments but it’s better to ask first.

    August 16, 2007 at 6:52 am

    Wishing the best for your mom’s speedy recovery. As always your family is in my prayers. And don’t forget to take can of yourself, you’re no good to your mom exhuasted. She needs you as much as you need her.

    August 11, 2007 at 7:17 am

    The waiting must be terrible. You have my prayers and hopefully all the worrying will be for nothing. Take care of yourself and keep us posted.

    August 11, 2007 at 7:11 am

    I don’t know how I could live without the fentnyl patch, lyrica and hydros. The pain in my arms and legs is constant. If your doctor is so clueless it’s time to find one who isn’t. We have a chronic disease, it’s not like we’re looking for a high. I’ve been late changing my patch and as the pain goes from a dull roar to intense I wonder how bad it would be if I didn’t have the patch any more. It’s a scarey thought.

    August 11, 2007 at 6:52 am

    I figured since I only go in one day every 5 weeks it wasn’t worth the trouble. The nurses at the infusion lab are great, always getting me on the first try. I want to go home, take off the band-aid and forget about it til it’s time to go in again.

    August 10, 2007 at 6:51 am

    When I was doing the solumedrol IV treatments they had me on calcium 600 plus d three times a day and a weekly suppliment such as Flosamax. You also need to be good about getting your eyes checked yearly and go in right away if you notice any difference in your eye sight as they can cause caterac {spelling is probably wrong} among other things.

    August 10, 2007 at 6:42 am

    I know they suggest lots of water before and during but lots of water is a given with me anyway especailly when needles are involved, I’ve some veins that aren’t the easiest to get to. Anyway it’s standard at the infusion lab I go to to give the benadryl/tynelnol combo, helps with the side effects. I’m a problem child so I take the ‘roids orally before hand, the nurses told me they had one other person who needed them with the IVIg but they just put it in the IV.

    August 9, 2007 at 7:56 am

    Thank you everyone for the birthday greetings! Did you notice the whole country had a night against crime just for me,lol. We had a block party with so many different kinds of cake that I think I gained ten pounds, never could resist cake. Himself doesn’t like cake {he doesn’t like much of anything} but had a good time with the balloons. Took a day of rest yesterday to recouperate hence the delayed thank you. Thanks again for thinking of my on my birthday!!!

    August 9, 2007 at 7:42 am

    I too get the aspetic meningitis with the IVIg, along with the benadryl and tylenol, I take 4 mg of Dexamethasone before each infusion and for a couple of days after. The IVIg works for me where other treatments wouldn’t, so a little steriods every 5 weeks seems like the lesser of the evils. I think dealing with the CIDP basically has turned me into a lab rat, always something new to try, a new symptom to deal with. I go along hoping to see some improvement, or an easier way to deal with the disease. Once in a while we hit on something that works and it makes it worth the trail and error process.