02 Apr, 2012 - 11:14 pm

Hi Guys,

I know I haven't been around much of late and as a moderator feel I have let so many down. The truth of the matter is life has been very difficult of late! Cory continues to suffer daily with up to 6 attacks, we have tried every medication and treatment option other than the nerve implant which the drs do not feel would be beneficial, deep brain stimulation and busting which we are not in a position to do. The only meds that help are the imigran injections and at $120 a day I can not even provide this.This condition is killing Cory physically, every headache brings him closer to another loss of limb, heart attack or brain bleed. Both of us are now emotionally, physically and financially destroyed.

Our treating Drs and Neuro are aware of our situation but are at the end of their ability to help also, although they are apologetic as to not being able to help and empathetic as to pain and destruction of our lives and have no answers and offer little to no hope.

Our 10 year old daughter has told me that she feels that we (myself and the girls) are very selfish, expecting dad to suffer like this, that we should give him the right to suicide and support him in finally ending this misery. As a mother and a wife this devistates me but as a supporter I have to aggree that no one deserves to suffer like this. Its been 25 years of attacks now but with all the associated problems from the vaso constriction it is at the point of just to much to bear.

This damn beast is not only beating us its demolishing every aspect of our lives, if it wasn't for the girls I know Cory would have killed himself by now and honestly I just don't have any fight left in me either. I cant give up for my girls but I do wonder if this life they have infront of them would be better without the burden of their parents in it? They deserve so much more than I can provide, love just isn't enough.

Regards Shell

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03 Apr, 2012 - 10:27 am

Shell said: love just isn't enough.

It is you know; love is what has got us through 41 years of marriage, my 14 years of clusters & Nina's nearly 3 year battle with breast cancer along with the surgery of a double mastectomy, radiation therapy, reconstruction that hasn't gone so well with the breast that had the radiation, love is what is still holding every thing together, we still have a way to go yet & that love will pull us through.

Shell & Cory Please please go & have a look at my thread on "An alternative anyone"; read it, follow the link to the US CH site of Batch's thread on the "123 days Mag/Cal/D3 regime", it's proving to be a relatively good winner for about 70% of sufferers, honestly you have nothing to loose.

Love is what has kept things together for so long that now at 63 years of age we are about to build our very first home; we have never owned a home before & this is a new experience & I guess the reward for putting in the hard yards over the years.

Love will get you through.

Love & Cheers
Barry

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03 Apr, 2012 - 12:52 pm

Thanks for your reply barry!

I know it probably seems like I'm being over dramatic and that's one of the reasons I've been not posting. I've been in contact with batch for the last few years, his work with O2 and " the Regime" have helped so many and I really am glad for those who have gained pain free times or even diminished attacks. He is a great man who has been a very valuable ally in our fight and we really appreciate him. Saying that unfortunately the O2 therapy no longer works, neither does the regime. Over the past two years a shift has occured with all meds, its almost like Cory's body just doesn't recognise any chemical alterations. The occipital nerve blocks, IV magnesium, Nsaids even narcotics just don't work at all. For a month during the first three amputations the Drs had Cory on a Ketamine Infusion and were very concerned as his dosage was the highest they had ever given and still no help.

I love Cory and our girls with all my heart and I'm sure loves what has given us the ability to get this far, and will give me the strenght to continue fighting. I know we are lucky to have each other and I appreciate it every day!

Im not at all suggesting that it is Ok to Suicide to anyone, I know there are options, its just when the Drs have no hope for your future and a 10 year old can see it would be kinder to give up their own father than leave him to suffer, it certainly makes you realise despite your best intentions that life and love are both a fight and by no means a fair one.

Regards Shell

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09 Apr, 2012 - 3:10 am

Hi Shell, sorry, I missed this post. PM sent.

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09 Apr, 2012 - 4:52 am

Hi Shell,
you have not let anyone down, if anything we as a group have let you down.
i note there has been many views of your post, yet only barry and peter have replyed.

i suspect like me, the others just don't know what to say.

while like most men, i like to put on the macho thing, i am not ashamed to admit i had tears in my eyes when i read your post..
i was particually moved by your daughters thoughts.

i wish i had more to offer, kim.

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09 Apr, 2012 - 11:00 am

Hi there Shell,

I have only just joined the group and as Kim says, what on earth can I say to make you feel better.

It is obvious from what you have said in your post that your kids know that they are surrounded by love by both of their parents. That is what they will remember throughout their lives.

It angers me that there appears to be no financial support for you and Cory from the Government for what is obviously such a destructive condition.

Please know, my thoughts are with you even though I cannot imagine what you and your family must be going through.

Regards

Pete

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24 Apr, 2012 - 11:09 am

Hi Shell,

I am going to send you a PM.

Matt

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