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Puppy Shower

Feb 09, 2009 - 4 comments
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double vision

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not sleeping

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Prednisone...wow



We had the puppy shower and I have been on 500 mgs of prednisone since Friday...and not sleeping.  So very stiff and very very off balance!  With about 20 people here Husband made a loud comment that he was cutting off my beer that I wasn't drinking because I couldn't pull out a complete or full statement.  Hubby and his sister did all cooking but People who really know me know that I am talk in half sentences any more...but when people are here I get called a dumb bimbo because I can't complete a full thought or sentence.  I know what I want to say I see it in my mind but cant say it.  I am still having blurry vision and some double vision in left eye...which I am now finding is causing strain my right eye.  Also feel like I am getting a chest cold because how weak my immune system is.  Just very frustrating.  I am trying to be postive and not complain but I am sick of being called names for things I cant control.  I wish I could say this is all a joke or I am faking it but I am not...dang.  I am sure all test will come back great.  But I am still surprised that on the bottle of prednisone it says for MS flair.  Also, my Mom said she had a dream about looking in a coffin and thinking it was her but she said it couldn't be because she was there sobbing.  She was wondering if it's me that is going to die...I just don't know anymore.  So very confused.  I think people outside my family know more of whats really going on than my family.  They don't want to know....well either do I anymore.  MRI for Brain and Brain Stem is Sunday Night at 6 pm...I am not sure when the test will be back from Mayo clinic on Devits Disease.  I don't think I have it..but I would like to see a negative.  

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by Rena705, Feb 10, 2009
Hi there...my name is Rena and after reading your journal here I couldn't just let it go honey!  First of all you are not alone in the way you are being treated by your so-called "friends" but you need to straighten them out if you want to keep them as friends.

For friends to name call and berate you because of the difficulty you are having with your speech is simply not acceptable and perhaps it's time they got themselves an education.  You can help with this by contacting your local MS Society and explain the situation being that your friends have no idea how much they are hurting you through their "innocent" comments.  The MS society will send you pamphlets that will help to explain to those that are worth it, what exactly is happening to you and how it is out of your control.

I had speech difficulty for about 1 1/2 years with slurring, stuttering and poor word retrieval and it was very frustrating.  However, once I let my friends know what the problem was they were much more accomodating and sympathetic to my cause.  This included taking the time to wait while I tried to express myself and ensuring that they fully understood what I was trying to say.  I have since gotten relief with (believe it or not) anti-depressants!  Apparently they make my brain respond and function faster and that is why my speech has improved.  If I forget a pill in the a.m. by the afternoon my speech is GONE AGAIN!  I also have difficulty when I get overtired but for the most part things have improved.

I also think that your husband needs to be taken to task for making fun of your disability and he really should be ashamed of himself for making you the butt of his jokes!  He should be made to educate himself about what is happening to you.  I can guarantee that if the shoe were on the other foot his male ego would not appreciate being made fun of and would want it stopped immediately.

Personally honey...I have learned to make jokes myself to deal with this problem...not that it is a cure but it seems to help me get through it...HOWEVER, you should be the one to initiate these jokes...certainly it should not be your husband!  Does he think that just because you are married that his "jokes" are not hurtful?  You need to let him know that this is not acceptable behaviour and that you would like an apology. Perhaps the best way to tell him how you feel would be to type out a message for him so that you can express yourself without interruptions and snide remarks from him.  Remind him that if the shoe was on the other foot, guaranteed he would not like you treating him this way.

I hope that you get some results from the MRI on Sunday and then perhaps you will be able to stress to the friends and family that this is a serious problem and that making fun is no way to deal with any of it.  Perhaps hubby is feeling stressed at not know what the future will bring but this again is not an excuse for ignorance ok?

Please let us know how you make out with the MRI on Sunday...we will be here for you and will support you in any way we can ok?  Keep in touch and take care and do something nice for you today...we all deserve to do something nice for ourselves everyday and especially if it keeps our spirits up in a world of uncertainty!

Lots of Hugs,

Rena

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by PastorDan, Feb 10, 2009
Yeah, what Rena said.

Humor is a great way for many of us to cope, but humor that makes others the butt of the joke isn't funny.

Plan B is to give everyone here his e-mail address, but that might cause more problelms than it solves. ;D

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by MOJO39, Feb 10, 2009
Thank You so Much Both of you Rena and PastorDan!  You all are wonderful here and so supportive.  I find here I am able to put down my thoughts and not worry about it.  The last "flare" I had in March I wrote down everything on paper and in the middle of the night.  I had completely lost almost 90% sight in my left eye at that time, so I was falling into walls and it was horrible.  This time I think part of my problem is not telling everyone what might be happening again.  They know I went to the Neurologist but doesn't know exactly what he's testing for.  I didn't tell them because I don't think they can handle it right now.  My Mom lives with us too and has slight dementia and they (sons & husband) don't deal with it as well.  I have been trying to give it up to God.  In turn God gives me web sites like this were I can talk, listen and learn.  I appreciate it so much!  Today is my last day of 500mg of Prednisone...Yea!! Maybe the jitters will stop! LOL  I can only hope.   Thank you again for showing me how to get through this! Please let me know how I can help you all too!  I am still trying to learn..
I hope you all have a wonderful day!

Michelle...MOJO 39

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by jed9999, Mar 29, 2009
This is all so important, Michelle---everything is triple hard right now, but you must fight. When you have a legitimate problem sometimes others can't handle it, so in their denial they joke to try and demean and belittle and otherwise "make it go away." That's totally childish and those of us on the other side of things see it and feel such disgust! You need tenderness and understanding right now more than ever. Those of us who've "been there" see that--stick with us and less us guide you through these valleys. It can be done and we can help! I've had MS 36 years and seen an awful lot--and do so want to help you. When you are able to get out of bed just a little, let's try and work out "a plan." Then you'll fell better to have some structure in mind. We all care. Jane

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