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Guest Mary from OH

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Guest Mary from OH

Hello dear friends!! I've missed you all, although you've all been in my thoughts and prayers. My stepmother died on August 11 after a painfully long and gruesome fight with cancer. In the middle to the end of the fight... my father was rushed to the hospital with angina and required a quadruple bypass. Of course, the heart cath and surgery had to be postponed by several days each because his kidneys were so low functioning.... Everything has been a mess here all summer. My father's wifes kids are making his life very difficult! Money is a horrible thing!! Her funeral was exactly 2 weeks after my father had his surgery. He was only able to see her one time before she died. After he finally got out of ICU, he had to go into rehab because he was weak and needed care. Her children (actually their husbands) told my stepmother awful lies for no reason except greed! People make me sick! Anyhow... Life has been rough for us all.

I am still in the midst of an almost 3 week excruciating migraine. Today, my neurologist doubled my morphine dosage for this weekend and will reassess me on Monday to see what to do.

Poor Marissa's motility has been SOOOO poor since they've taken her off the propulsid. She's in SO much pain every day. She barely eats most of the time, but since she dances so much, she is keeping her weight up since she is so muscular. But, many days she cannot even dance because of the pain. It makes my heart break.

We're all just barely hanging on. I just wanted to say I missed everyone and haven't forgotten about you, I've just been a little... CRAZY!!!

LOVE to everyone! :)

I pray that everyone is doing ok and no one is in any major "potsholes"!

I guess (?) I kind of am, but maybe not... I'm just taking every day, one hour at a time. :) So, that's fine for now.

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Mary, it sure sounds like a tough time for you and your family. I hope that things smooth out for you very soon. Big hug, Nina

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Oh Mary, my heart goes out to you and your family! I am so sorry for your loss and heartache right now. I wish I had "the right words" to offer but please know we are here for you.

I totally understand what it's like when life gets crazy and you are so worn out---you want/need the support of those on this board and yet sometimes your personal life is so chaotic and exhausting you can't even reach out or keep us posted.

Things will get better and the load you are carrying will get lighter. Meanwhile, let us help you through it!

Hugs being sent your way

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Mary I am so very sorry for your loss..

please know that we are all here for you!!

God bless you and your family...

Linda

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mary-

it's good to hear from you but of course i'm sorry to hear that things have been so rough lately. you're dealing with so much that it would be odd NOT to be overwhelmed. i do hope & pray that things will somehow ease up a bit for you soon, that there will be a break in the clouds so to say.

hang in there & keep in touch as you're able.

(((HUGS)))

melissa

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Mary,

I'm sorry to hear you're going through these hard times. My mom is caring for her dad with kidney and heart problems and i know how stressful that situation can be...not to mention the other things you have to deal with! Hope your health improves most of all. You'll be in my thoughts!

Kristen

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Mary,

I am so grateful that you checked in with us, but I'm sorry it is still an update with a 'green face' icon! :)

I was smiling today b/c both you and Tearose 'popped' up on the board in the last couple of days. I worry so much about everyone and I thought about how I am just like my neurotic dog! I hope this gives you a smile. Asher is a herding dog by nature, and if he doesn't have all of his herd (mom and me) in one place he is beside himself. He's also a rescue dog with super duper anxiety issues! But, I realized I am soooo like him. I feel much better knowing where all of the members of my 'herd' are! My friends, family and POTSPals!

But, a big UGH! with what is going on with you. I cannot imagine. I can see why you are just barely holding it together. I wish I could think of something so spontaneous and random act of kindness --like you did when you called the pharamcy for me about the Dexedrine. But, this situation you are in is soooo tough...I am just so sorry you are going through all of this and Marissa too. And wanted to chime in to send you support and love and hugs...

Emily

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  • 2 weeks later...

Mary, You and your family have really gone through tough and very rough times these past weeks. I am sure all the worry about your family has probably contributed to your migraine. Have you ever used DHE-IV (I think that's what it is called) to help break the migraine cycle?

I join the others in sending my hugs and kisses and good thoughts that the coming months will be better than the past.

Lois

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Guest Mary from OH

Lois, (and all)

Thanks for everyone's kindness!!! No, I can't use DHE. It contains ergotamine, which I am deathly allergic too! Right now, since my migraines have been intractable for so long, I am on morphine 24hrs/day. I was previously on a wonderful drug called Palladone, but the idiots from the FDA decided in their infinite wisdom to yank it from the market since it has a deadly reaction with alcohol. Never mind the fact that they knew that when they approved it and that it comes with a black box warning and that you have to sign all these papers acknowledging you understanding about the lethal reaction with alcohol and that you can't even use mouthwash that contains alcohol or cough syrup that contains alcohol and they also give you a warning/information sheet that about scares the living daylights out of you and makes you not want to even take it!!! It is also a time-released drug and if you accidentily break it, it will release too much of the drug (also what the alcohol essentially does) and you will die from an overdose. Exciting!!! But, my neuro carefully explained everything to me and told me if I took it as directed, it was perfectly safe. I did. And it worked WONDERS for me!!! I was only having maybe 3 migraines a month. I cried so hard when I found out the news. Of course it was all when everything else happened too!! When it rains, it pours!!! The morphine just isn't cutting it. The weather changes just KILL me!!!

Anyhow, I appreciate everyone's prayers and concerns.

Love to everyone. I miss you all.

I am going through a lot right now with my daughter and her school regarding her "handicaps" and getting them to properly take care of her and write a 504 plan or an IEP. God forbid I'm a former Psych and totally know my rights and used to do this for a living!!!! It's really frustrating me!! They are breaking the law and it's killing me!! Marissa's dr is not taking care of her and she is still in constant pain with her belly. And to top it all off, her GI just DUMPED her!!!! I could have SCREAMED!!!!!!!!!!!!!!!!!! She did pass her off onto the head of GI who is a nationally renowned specialist, but she had the audacity to write my daughter's pediatrician and make HER tell me that she was dropping Marissa as a patient!!! Anyhow, to say the least, I'm stressed to the max!! The peds dysautonomia spec. that we were referred to from someone from DYNA has never bothered to call me back ALL SUMMER LONG!!! I have called over 12 times!!! (long distance!!) Sometimes I swear I must be cursed!!!

Anyhow, I'm so sorry, this turned out to be a very long vent when I started out as a thank you. I apologize!! I have a migraine, yet again and I'm grumpy!! I'd better stop now!

SIZE=14]LOVE YOU ALL!!!

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Mary,

I'm sorry your having to deal with so much stress right now. I can only imagine how those migraines must be for you, especially during such a rough time like this.

Your daughter's GI doctor should have called you directly, or sent a letter explaining that she was passing your daughter's care to a GI specialist who could possibly be of more help to her.

I'm sorry i'm a little late in responding, but I wanted to chime in to let you know i'm thinking about you and your daughter, and sending you both my prayers as well.

I read both your posts, and i'm sorry you had to deal with stressful family issues surrounding the loss of your step mother. I hope your father recovers nicely from his surgery, he will be in my thoughts and prayers. I know he has had to deal with the loss of his wife, and it must be so overwhelming for him after having major surgery.

I hope your daughter finally get's her pain and GI issues under better control, and that you will have releif from the pain that come from those dreadful migraines.

Now it's time for you all to get some good new's----ENOUGH OF THE BAD.

Hug's and Blessings

Julie :0)

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