[Raynaadi]

(copied from myspace bulletin and mass email to my friends)

Hey everyone. I hope you don't find this tactless, but there are so many people I have to give some news to that this is the easiest way. Friday I started loosing vision in my right eye. I spoke with a friend in the program who is a nurse practitioner and she said that if you have any change in vision, you should get to the er. Thinking it was a migraine, I went home to sleep it off after making plans with my friend to drive up for the Saturday meeting at ASCYPAA and drive back. Saturday morning the vision loss was worse, but I decided to go to ASCYPAA anyway. My friend Greg went with me. We been in each other's lives for half my life, and he went with me to the AA function even though he's "normie". Long story short, we drove back from Prescott and arrived back in Tucson at about 4am and went to Northwest Medical Center ER. The doc looked at my eye and paged the opthamalgist for a more direct answer. The opthalmologist was on call and asked us to meet him at his office where his equipment is better. This doctor came to his office at 6:30am on a Sunday to see me. The ER was dead and we got right in to...so far the treatment is absolutely amazing!! So, the eye doc takes a look after dilating my pupil and says he wants me to have an MRI. Turns out this kind of loss of vision can be a sign of MS - Muscular Dystrophy. An MRI is the only way to diagnose it for sure. So back to the ER we went and they got me ready for an MRI, hooked up an IV, took some blood. Mind you, Greg and I haven't slept yet haha. We both got up about 9:30 Saturday morning and now we're struggling to stay awake at the hospital. The ER doc's shift was over...but he stayed an extra hour for us to get back and make sure my MRI was ordered. He even brought us coffee! He filled in the next Doc on the situation and I was finally taken for the MRI. Very cool experience! You're all bundled up and put in a tunnel with headphones playing your favorite music. It's loud in there, but it was comforting. I was actually able to get a nap in there. The whole process took about an hour, and then I was taken back to the room to wait for the Doc. She came in and didn't waste any time. The MRI showed lesions on my brain - MS. So...I have been diagnosed with a progressive disease, my second. I cried a lot, and felt anger at God, and thought what was the point of getting sober...but if I hadn't of gotten sober, I wouldn't have been at that convention, Greg wouldn't have been with me, and if I hadn't decided to ignore the proglem, I would have gotten the diagnosis alone, and would not have God and the steps and a village of people to help me through this. I made myself get into gratitude quickly. I wasn't planning on going to ASCYPAA at all, saying there will be more conferences. I'm so greatful I did, because though I'll probably live a long time with this, you just never know. Greg stayed the night with me because the ER gave me a high dose of steroids, hoping my vision will come back and to offset the onset of the MS. The steroids can cause hallucinations and cause me to get a little crazier then ususal. So far this hasn't happened. I'm feeling quite achy but the sun feels really good. I go back today and tomorrow for more IV steroids, and then I'll be taking them in pill form. So if I get puffy you'll know why. =) I'm in good spirits this morning but I know that will change. Greg and I watched the sun come up, and enjoyed the birds and bunnies that come out by my apartment in the mornings. I go back to the hospital at 11am to get my "soldiers". I have cried a lot and will cry more, but no matter what, I don't want to drink over this. The thought obviously crossed my mind but what would that help? I'm o.d.ing on coffee but thats it. I don't know what will happen with my work situation, and I have a lapse in insurance since I just changed jobs. The vision in my eye is completely gone. I had some periferal vision but this morning it was gone. I can tell when there's light in front of my eye and that's it. So...if the vision doesn't come back, my job will be no more. How do I feel about this? I know I have family and a village to help me through this. Again, I hope this is not an insetitive way of informing you all, but there are so many of you, I couldn't bare the thought of having to explain this over and over again. I'll see ya at meetings, and I'm not giving up!! Help me fight, help me stay strong, help me stay sober. I need you all now more then I ever thought I would...I love you all and talk to you soon.

[Rhapsody]

Good for YOU............... NEVER give up (and) when you do get down and angry at God, just remember that while there is a God there is also an EVIL ONE that comes to destroy and to steal from you.

Good Luck.... Special GIFTS come in strange ways....


LoVe,
Rhapsody -

[allthegirls6]

I dont know what to say. It seems like its a hard blow to deal with and probably easy to slip back. But it sounds to me like you are using it as a way to move forward. I admire you.

As for the vision. My friend has MS and lsot her vision in one eye but it came back within the week.

All the very best to you

Atg

[BlueFaith]

((( Rayna )))
You are one strong person. You're in my thoughts and prayers. Take good care of you.

Hugs, Jenn

{{{{{ Rayna }}}}}

I am sending every postive vibe I have your way.

You are amazingly strong, Raynaadi, even though you probably don't feel that way right now.

Keeping you in my thoughts.

[kimmydawn]

((((((((Rayna))))))))))))

You are AMAZING. Many prayers and thoughts for you.

kd

[January]

((((((((((((( Stepfordsister )))))))))))

I'm so sorry this is happening. I'm here for you anytime and everytime you need me. I'm a good listener, you know.

Much love and many hugs,

Jan

[bipolar_bear]

(((((((((((((((Rayna))))))))))))))) Your reaction to this news is phenominal. It sounds like you have a lot of faith, friends and relatives to help you through this. I have a friend that has lived many years after being diagnosed. Please take care of yourself. You're right alcohol is not the answer.

[Monty_girl]

I'm sorry you are going through this. Did they say if it was the RR-MS ( relapsing- remitting form of MS ) ? I hope that you regain your sight soon. Don't get to hot, it can make MS worse. There are some of us here at PC that have MS as well. I was dx'ed just over a year ago after one eye was blurried. It's cleared and has stayed well for awhile. I'm sorry you have to go through this. It's very unfair.

Monty

[Sabrina]

You have handled this so well. I really admire your strength and positive attitude.

I wish you much strength.

you are such a strong person....i know that you will go forward and take good care of yourself. xoxoxo pat

yeah, like the others said, your obviously quite strong! I can see that!

[silver_queen]

(((((((((((((( Rayna )))))))))))))))

I'm so sorry to hear that's happened to you! It's great that you went to the dr and got it diagnosed - hopefully that will help you fight it now you've got something to limit the symptoms. Stay strong!

Silver

I have friends both here and that have passed on from MS. I have two terminal diseases one is progressive the other is in remission. So I definately understand.

I was told I would probably go down hill in 4 years from the diagnosis from the progressive disease and Im still here 20 years later.

My secret weopon? Positive thinking, using humor every chance I get and taking care of myself.

so don't let any well meaning treatment persons tell you that you have only this long and you need to prepare yourself that you are going to die. Like I tell them "being given a death sentence does not mean I won't fight it and knock it right out of my way. preach all you want but this is not how I plan to die" They sometimes laugh at me and tell me be strong but reasonable. and I look at them and say -reasonable is not in my vocabulary, I don't care what "stage" I am in nothing is too far gone for treatment lets do it. And I surprise them every time. Now one physician says Im to stuborn to die. LOL

Take care

rayna.....i am so sorry to hear of this news.........

[wisewoman]

Thanks for sharing with us. I have heard that symptoms can wax and wane and then be accute. There must be some magic in positive thinking and taking care of yourself. Good luck.

I have a good friend who was diagnosed in 1970, and she is till a fiesty darling. And she is still walking at age 80. So, don't think all is doomed. She lost vision in one eye at least 3 times, and it came back each time. She has MS-RR, Relapsing Remitting. That's the most common. Her advice is always to keep active by swimming INDOORS.

As someone else said - stay out of the heat! Keep the a/c cranked and make sure you find out which kind of MS you have. Here is a good site:

http://www.multiplesclerosis.com/index.aspx

They have good simple info for those who are newly diagnosed. You may find a local support group too.

Here is a list of a gillion sites!

http://www.multiplesclerosis.com/adm...=243&zoneid=51

"National Multiple Sclerosis Society at 800.344.4867 (800-FIGHTMS) to get contact information for your local multiple sclerosis chapter." Make sure you ask for a group for those who are "minimally affected" or newly diagnosed.

Take good care of yourself, and stay out of the sun!

Emmy

[bebop]

I was going to say that ms is different than Muscular Dystrophy. very different diseases. please take care. my sister in law has ms and she gets really ill at times. find a good dr that specializes in ms. alot of good stuff going on in that field right now. good luck hon.

[Fuzzybear]

((((((((((( Raynaadi ))))))))))))

[Hopefull]

Wow! Sorry to hear that.
It's sounds like that would be very hard to deal with. Feel free to reach out for support whenever you need it here on PC.

[ozzie]

(((((((((((Rayna))))))))))))) I'm really sorry to hear this.

[mrb020377]

(((((((((((((((ray))))))))))))))))))))))))))))))))))))

i am here for you!!!! keep strong!!!

[desirae]

I'm so sorry to hear this news but the way you describe this situation gives a strong sense of strength. I am amazed at how well you are handling this. It kind of influences the rest of us to be strong through difficult times as well.

You deserve a big hug (((((((Raynaadi)))))))). If you ever need anything just hollar.

[Raynaadi]

Hey guys. Thanks so much for your support. I'll be admitted to the hospital Wednesday morning. So I'll post as soon as I'm home!! Still no vision and that's why they're admitting me. Friends will bring me meetings in the hospital, so I'll be ok. I'll miss PC very much. See ya'll when I get back.

[oksomaybeimnuts]

{{{{{{{{Rayna}}}}}}}}}}}