Is what I have been called..... Since my last post lots of things have been happening. My face started to go paralyzed again for the 5th time now... So I was put back on high doses of prednisone 60mgs/day (high is usually 40mg/ day) I feel good while on prednisone BUT have some pretty bad side effects... THEN once that round ended my face swelled to about 3 times its norm... SO low and behold BACK on 60mgs pred for 10 days, then 40 mgs for 10 days then 20mgs for 10 days... so I will be on steroids for about another 3 weeks! Side effects include "steroid face" My face has doubled in size so I am skinny still but have a very large face, its very ugly and embarrassing but I feel good so I can't complain too much, I also sweat like a pig which is gross I have to take many showers in a day to say the least... and lots of other side effects that are just too many to mention, I feel for our kids now that live on steroids due to their prematurity, I know now how they must feel when it happens to them!
Anyway so I still am 100% deaf in my right ear and as of last Friday I was told by ENT there is pretty much no hope of it coming back and due to how much damage I suffered from this there is no hearing aid to assist me at all. SO I am legally deaf! Which depending on the day I am OK with because really what can I do about it, but it is something that is so frustrating at times especially in the car.... I can't hear anyone that is in my passenger seat! It sucks.. So for anyone who talks to me if I don't respond I am not being rude I just can't hear you.... I am constantly having to explain this to people which also gets frustrating...
Went to Rheumatologist yesterday, they now are thinking that it is an Autoimmune condition doing this to me, but they just don;t know which one.... They mentioned yesterday and disease called Cogan's Syndrome which i don't really fit but its all they can think of at this point.... I am being referred to a team in Boston for further testing/diagnosis. That ought to be fun in all my spare time! The doctor thinks its well worth the aggravation though because he says there is something wrong and we need to figure it out! I can't live on steroid forever! I also had an MRI of brain and inner ear yesterday so we will see what that shows.... It might actually show a brain! Imagine! :) Although I am being checked and worked up and all that I am getting very discouraged with this whole thing.. I just want an answer.... What 29 year old wakes up deaf??? (besides me)
Anyway Kids are good, Bryce is up to 4 hours/day no O2 and handling it well so far. Synagis starts next month (we got approved thank god!) Faythe and Nicole are doing good in school and are taking dance so we are staying busy! Nicole takes 9 classes a week and Faythe takes 1. They are loving it!I will post some pics later we have some from the Applefest from last week at Wachusette Mnt. that are really cute.
Saturday, October 25, 2008
Saturday, October 11, 2008
Changes
This illness (whatever it is) has turned me into someone I don't know anymore.... I am having an extremely hard time dealing with the hearing loss and trying to adjust to life with only 1 functioning ear. Not because I can't hear out of one side but also that my left ear is working so hard to make up for the loss in the right that I can't really go too many places or be where its noisey for too long because it over stimulates my brain or ear or whatever and it makes me crazy. I am going stir crazy because I am still on 60mg of steroids/ day and all kinds of other meds for this thing, plus now I am afraid to go anywhere because of the noise levels, and even being home is hard when the kids get hyper or noisey it REALLY stresses me out. SO in trying to remain positive and not go TOO CRAZY I have taken up baking and I thought I'd share some pictures of my "attempt" at making a Boston Cream Cake. It tastes good, BUT .... Wait 'til you see it! :)
Looks good huh????????? The whole stupid thing collapsed....... Oh well still tasted good!
Looks good huh????????? The whole stupid thing collapsed....... Oh well still tasted good!
Finished product, I tried to cover the collapse with sprinkles... Didn't work. Still fun though!
And here are some pics of Bryce taking a tubbie! He just so darn cute!
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