I hear you!!

August 29, 2010 at 9:00 pm

i hear you and agree!!! but keep fighting–keep researching and bring that research with you to your dr’s, We are just one of the many patients they see in a day–so take advantage of that time–have a plan of things you researched and wonder if you should try–get ideas from others here. I find that at least with a plan of action and knowing if that doesnt work –you’ll go onto the next plan. that gives HOPE and hope and determination keep us going. hey— but it’s still okay to vent and wonder why in the world we had to get this crap!!

I hear you!

April 1, 2010 at 9:07 pm

I too went to a neuro optho and she told me that if my double vision ever became an issue, that they would run more studies….??? I said, “When it becomes an issue”? Let’s see, I think it became an issue when I had to stop working, couldn’t drive, read, couldn’t cook without burning myself, stopped being able to reach for a glass of water without shattering the glass, etc, etc….. Your right doc, so far so good! And that was before kids!!!!! I have since taught myself how to live with the double vision, but the loss of depth perception was the icing on the cake! Double vision AND loss of perception, it’s like reliving when I first got sick 8 years ago! I don’t know why the depth perception became an issue after ivig, but now, it’s back to normal.
BTW: I know how you feel about flouresent lights! Talk about nauseating!!!!!! I can’t sit in a room with them without getting a migraine!

[QUOTE=limekat]I haven’t heard of this as a side effect of IVIG?? I got eye pain from the infusion fluids causing swelling in that area but when I went to a 10% concentration it went away.I was told the IVIG may help with depth of field problem but didn’t. Sigh.
Do contact your neuro about this to be sure.

I also have the CIDP depth of field issue and went to special eye doc about it. He said it was more of a nuisance than a bother.
I thought I’m paying you $ 450.00 to hear you say it’s nothing?? You try to maneuver having a strange sensation of not much balance/can’t determine where the floor is/ florescent lights make you flinch/bruises all over/breaking the same big toe nail month after month/figuring out where exactly the door knob is/etc. A silly nuisance, huh??[/QUOTE]

I hear you

December 1, 2009 at 7:08 pm

I hear you about not wanting to give up, but, really that is exactly the reason that I got the scooter. I knew that I could not walk enough to be able to work, but I could do all the other parts of the job that I have. the reason to say this is that attitude always makes a big difference. There are often more than one way to view a decision. Using a scooter or a walker or cane is not a statement for me of disability, it is rather a statement of refusal to give up. I will not let this disease take away my ability to do what I love most to do. Do you understand?

It would be really, really hard for anyone to go back to work after so long working as Executive HomeMaker (mom). The problem with us is that as you state stress acts out physically and the physical toll zaps the mental strength down. What I hear from you is that you feel like you are between a rock and a hard place and this is understandable. What I think all of us are trying to say is not to feel like the rocks are going to squish you from either side. You are strong. Believe in that. But maybe also use all that life experience that being a mom gives you to find ways to dodge those rocks if they do start trying to tumble on you–either as arguments against you getting SSI or as arguments against you getting a job. One of my good friends told me when I got this neurologic illness that what I needed was a “Mother” to help encourage and advocate for me–someone to listen and be positive and to help sort through challenges and find ways around it. If you have some special friend or sister or mother that can help, get together and make some lists of ways that you would be better in life with each path and ways you might circumvent tough situations in the way. Do you know what I mean?–to use attitude to show your strengths and minimize what is not as strong.

i hear you

October 1, 2009 at 3:08 pm

survivorx2– you wrote, “I would do the chemo in a heart beat if I could just walk again (even with a cane) & drive and be independent again.”

then do it.

i hug you deeply,