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Melissa Update...

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Thank you to all of you who have been asking about Melissa. I am sorry I have not kept you up to date sooner. She and I have only been able to communicate a bit through voicemail (as we are both asleep at opposite times, it seems) mostly.

Also, things have been very up in the air, and I kept waiting to have 'more information' before I posted an update...

Tonight she called and we got to talk for just a few very short minutes which used up all of her energy.


Things have taken a big downturn.

Just a couple of days ago they were hoping to release her, as the fevers had settled, the headaches had settled and she was able to cath herself again.

Tonight she called to tell me that she is in the ICU.

The headaches have returned with a vengeance, the fevers are sudden and extreme and quelled by liquid motrin, they are accompanied by sweats and horrific chills.

Her vitals are all over the map and they are unable to regulate them. Hence the ICU. And Oxygen to help her breathe when her BP and HR are all over the map.

Still absolutely no clue what is going on. It is not sepsis this time and they have not found evidence of infection.

It's all very scary.

She's on morphine for the pain, and also, despite pumping in TONS of fluids, she is very 'dry' so her voice is scratchy and b/c she is tired, her voice is weak, so I have had some trouble hearing her and catching the details but she's too tired for me to bug her to repeat them!


If you pray, please pray for her. She is a very spiritual woman. If you don't pray, hold her in healing light.

She is having trouble keeping up and cleaning her voicemail, but I will make every effort to either 1. Read all of your posts to her over the phone, or 2. Email them to her mom to print and take in to read to her.



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If you want to write Melissa a note that you don't feel comfortable posting on the board...and you feel comfortable emailing it to me to pass on to her mom to read to her...that would work too...if you don't have my email, just hit the 'email' button by my name and voila! Don't PM me as my box is always full!

Thanks for your messages! I'll let her know...



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Emily, thanks for the email.

Melissa, you are one strong person, keep fighting and know that we are sending our thoughts and prayers your way.


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i've been reading your post in nina's topic for volunteer readers. you ARE a volunteer keeping us all updated about melissa's condition. i know how hard that is for you too. you both are troopers!!!

dear melissa, i'm thinking of you always and hope that soon you will be feeling better and that your docs will have, whatever is wrong with you, under control soon. i think i need to start a fairy card especially for you.


corina ^_^

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Dear Emily, My thanks for keeping us informed about Melissa. Please convey to her that she continues to be in my thoughts and that I pray for her continued strength in fighting.

I think the question about immunogammaglobulin (spelling) came up because Melissa took some IVIG treatments. IVIG is a blood product that carries some risk of infections carried by the donors.

You are a dear!


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Emily--thank you so much for keeping us connected to Melissa. I know it takes a lot of your energy.

Melissa--You continue to be in my thoughts. I hope the hospital finds a solution soon for you. I am so sorry you are in so much discomfort.

You are both among the most beautiful, strong people I know. I admire you both greatly.


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I do not come to this site as many as most, but I must say, by your thoughtful supportive posts, it was almost easy for us as readers to remember how ill you are.

While we all have dysautonomia, many members have major OTHER issues going on that complicate the already convoluted issues greately. You are that kind of patient and it must be terrible for you and your family.

Your sweet spirit always shines through even as you have posted of some of the wretched situations you have been through in recent months.

I hope and pray you are kept comfortable, and have attentive nurses/ DOCTORS to figure out this latest puzzle.

I know words cans seem so empty as trying to say some things sound trite. But my thoughts are from the heart and I hope you get some relief SOON, get a handle on a plan of treatment and back home.


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I'm so sorry- I've been away for a week, but I've been thinking about all of you!!

Melissa, I hope you're doing better soon, and I'm sending you heaps and heaps of love, happy thoughts, and hugs!


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