Ginny

[Guest guest]

Thanks so much Ginny. Sounds like your plate is a bit full too.

I'm still desperately trying to hang on tight and hoping for the best.

In a message dated 11/5/2004 12:10:50 PM Eastern Standard Time, RSD-CRPSofAmerica writes:

Date: Fri, 5 Nov 2004 06:16:32 -0800 (PST) Subject: Re: My apologies,No need to apologize...Use delete when you have to and don't worry about it. You have alot on your plate which I am sure you have heard and is becoming a cliche about now...I also hear it way too much..so i can empathize. I also have a special needs son who is 9 and autistic...and as you said it so well just waiting for the other shoe to drop is a constant here. I am so sorry you have to endure so much...but try to look at the bright side of things...even if it's just a fleeting smile from a family member...look around and try to see the positive...it can be so hard to do sometimes. I hope your daughter will go into remission...it must be the scariest thing to hear for you that she has RSD...since it has changed your whole world and caused you so much pain and you wouldn't want to see anyone go through what you have to. But remember...RSD hits everyone differently...she can go into remission and she can have it at a lesser degree then you do....I know that may not help much buthopefully it will lessen your anxiety about it. I hope you brighter days and less pain...Hugs..Ginny

[Guest guest]

Sounds like you are going thru some major hell Ginny! I've had some instances where I've had pain behind my eye but no other systems like a migraine or headache would normally have......but, I've just figured that it was eye-strain and I'd grab my glasses and wear them for a while. I'm guilty of not wearing my glasses for reading even though thats the only time I was supposed to wear them. I would wear them off and on when I would read, but not every single time like I should have.

I also have Bells Palsey on the Right side of my face, have been in Remission for 15 years. I had just turned 15, in fact, it was right around the first part of October when I first started showing the signs of Bells Palsey, and had the full blown symptoms by the end of November. Luckily, by Febuary, the Symptoms started disappearing, and by May, it went into Remission.....and has been ever since. But, because of it, I couldn't open or close my eye completely, I couldn't wrinkle my nose or move my nose at all, I couldn't open my mouth.....it was stuck closed the whole time on the right side... but, I also had pain in my eye because it was stuck part way open constantly......it wouldn't shut so it got really dry, but wouldn't open either.

I'm just scared that one of these days that the Bells Palsey will sneak back on me.....one night I'll go to sleep just fine, then I'll wake up with the whole Right side of my face totally numb and immovalbe.

Good luck, I hope that the doctor can figure out what to do to help you!!

Tonia

-------Original Message-------

Tonia,

For about 3 weeks now my right eye has been bothing me. Everytime I move my eye it hurts behind the eye..like when you get a migraine but without the other symptoms..and my eye sight in that eye has been affected it looks like I am looking through grey fog. I went to the opthamologist a week ago and was told that I had optic nerve damage from an auto-immune disorder. Since I have many auto-immune disorders we have to figure out which one is doing it or if a new disorder is emerging. I went back yesterday for some more testing and have to see a rheumatologist and neurologist soon to see how they want to treat it. So now I am waiting to see what the next step will be. My left eye seems to be unaffected at this time which is good. So I am hoping we can start a treatment soon since this has been going on now for awhile. Sorry to hear about your eyesight getting worse...I do know fibro can cause alot of problems with all muscles including the ones in your eyes and internal muscles. Good luck with the new glasses and stay close to home for a few days til you get used to them. HUgs..Ginny

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Barbara..lol..maybe you should remind me tomorrow night to remove hershey's from my pocket. Knowing me I will forget. Hugs..ginnyBARBARA TORREY wrote:

Ginny - I guess maybe being a spelling or typing teacher isn't on the horizon for you. By the way, Hershey's miniatures go a long way at remedying a lot of things. Just be certain to check your pockets before you do your laundry. BarbaraGinny Barrientos wrote:

To everyone,

Tricia is not an evil person....I think barb clarified her letter...and I must be queen of not reading posts right because I never caught the error til she corrected it..lol So backing up tricia here...lol. Now me being a little evil?...lol...seems like my horns have been showing a little more then usual...lol. And if Lyn draws a pic of me my horns will be showing all the time..lol. Thanks everyone for the good lucks..I am sure things will be resolved with the eye thing in time. I figure a positive attitude and hershey's miniatures in my pocket will make everything go smooth tomorrow..Hoping you all better days..Hugs..Ginny

[Guest guest]

Ginny - Even though your son wasn't approved for DMH services, there are actually several groups in Massachusetts (free) that are available to parents. One of them, although funded by DMH is totally open to parents even if there child is not receiving DMH services. It's called PAL (Parent Advocacy League) The website for parents in MA is http://ppal.net/ . I'm pretty sure they even have the place/time of the meetings listed for your area listed at the website. A lot of the parents of kids that I work with have found it helpful both before and after they were able to secure services for their child. If you're interested, I can get you more information. It's a great way to meet other parents who are living a life that is similar to yours, get resource information, and get/give support.

The other thing that's important to remember is that DMH won't provide services if the primary diagnosis is an autism spectrum disorder but if your child has other mental health issues (ADHD, PTSD, OCD, etc.), DMH will give services if the clinician or doctor involved knows the system well enough to have the autism/PDD listed as the secondary diagnosis instead. Just a thought. Barbara

[Guest guest]

Jo, I just mailed the message that it was on to you directly. He sure is handsome young man. You will enjoy. How is your grandchild.....do you have any new pictures to show? I bet get some great ones over Thanksgiving. Have a special Thanksgiving Jo and get a picture for us all to see. Take good care.

JoAnn

s Momma

Re: Ginny

Hey!! I missed a picture of your son??

I've been ramming through emails like a madwoman, but I very rarely miss kid pics! Can you tell me which post so I can see???

Hugs,

Jo

[Guest guest]

Jo, maybe should buy all beautiful artificial flowers, put them all together in great style, put few yard ornaments around and just enjoy the beauty. Seems like an easy way to have flowers and no watering needed. Think worth try Jo, go for it and let us all know how well it works, okay?!!!!

HugsJoAnn

s Momma

Re: Ginny

I had purchased 200 plant bulbs with the understanding that my sister, my niece, and I were going to spend a day planting bulbs together at each of our homes.

Ok, Barbara, I've got you beat. My husband, whom I love more than life itself, got the brilliant idea to plant bulbs and order 800 of them! We got them all planted, believe it or not, and of course, the deer ate most of them. I was rather looking forward to seeing that many flowers in the spring, now I'll just have to search and see if I can find ANY!