I am really horrible at updating this so I apologize for that. The stroke that Ron had in December did more damage than we realized. He had a neuropsych test done and the results were pretty surprising. I won't bore you with all the medical speak but his inability to control his impulses and the changes to his personality are significant. Our next step is to try to find some sort of cognitive therapy but as of yet I am not having much luck finding a place that accepts Medicare. Ron does not qualify for any supplemental insurance to his Medicare so we are required to pay the 20% that Medicare doesn't cover. That may not seem like a lot but when you count up how many doctor visits he requires plus the upcoming tests, well we are having trouble. Ron needs to have 2 tests done on his bladder to insure that the first chemo medication he was on did not cause bladder cancer...yes, the chemo causes bladder cancer. They are pretty positive that his issues are due to the miswired parts of his brain but we need to get these tests done to verify. We also need to get him in for treatment with a neuropsychiatrist. That is one of the downsides to living in the country, all of the doctors and specialists are at least an hour away. He has an appointment next week with his rheumatologist. I will try harder to keep this updated. Thank you for reading!
7 comments:
Baby baby babies, I am so sorry, honey I pray for God to lift you daily and can't imagine what you are going through. I know I've said this before Mandy, I love you all, my prayers for you and your family are deepening. You've cinched the number one spot at the top of my list. I know there is probably nothing I can do, but if you ever need someone to talk to call please. I'll listen. I'm here for ya'll.
Thank you so much cuz...i often forget that I have people in my life who are willing to listen even if they are not able to understand. i love you so much and again i thank you!
Hey Mandyhoo. If you ever need to vent or need some reassurance that you are not alone, I am just a phone call or IM away. Love ya girl!
thank you gingie....i may take you up on that soon. i am sending you my number on FB. i text more than anything.
Amanda hi!
I come to your blog often, and look for updates. I was so happy to see your back writing again.
whew, where do I begin....
my husband also have cns vascultitis. and as debilitating and rare as the disease is, i come to look forward to someone else who just knows what im feeling in my life.
i swear I could have written this blog myself. seems like a mirror image of my life.
we were approved for disability in january, every day is a challenge, and hope for not another relapse.
i have made peace with my new life.
my husband was a athlete and very intelligent man, now hes just not there sometimes anymore.
friends are a defnite thing of the past, and family too.
my husband was diagnosed sept 2009, and thats when i say he died.
i am learning to love and accept the new person. the doctors said case was primarly on the right side, so his personality and intelligence is still there, and sometimes I do have him. But other times he cannot remember the most simplest task.
i visit your blog often, becasue other than u... who can I tell? no one understands and invisbile injury such as brain.
there is no repair, or fix it.
i was reading this blog, about the grief u have for a brain injury spouse- because there is no finality. no funeral.
just day in and out with someone totally different that what u fell in love with.
i dont know what to call it... but ur right caregiving does something awful to a marriage.
i am in charge of everything, my husband cannot focus, multitask etc.
and in the midst of this, i have had two babies.
i hate my inlaws. they see there son. they know of the injury. they know he cannot work, rather any serious work tat would pay. and they do nothing. they live 5 minutes away and cannot even babysit.
i love the title of your blog our new life, because thats exact what it is. ur at the hospital praying to get released then when u do, u realize everything now that wasnt before.
i have two children, on food stamps, get medicare, house in foreclosure, husband disabled, and the repo man came to my house today.
there is no answer for me, except prayer. and through it all i still beleive.
the doctors always ask the patient how are they doing? but who ask you - the caregiver?
earlier this year i decided to release my husband from my worries. i put him in Gods hand.
i am no doctor, I can only offer support. if he doesnt want to take medicine, and the headaches start, he will die.
he smokes weed, so he should take his medicine on his own. i dont worry about him anymore.
he could be in a car accident, and die a lot sooner, and so could I.
Life is short.
I was reading that caregivers, often die before whom there caring for.
Melissa I encourage u to take care of yourself.
I know other people can only offer advice, but I am someone who is walking in your same shoes. I know the agony of CNSV, and waiting for the next relapse, doc appt, MRI, being shuffled through neuro ICU units.
After I relased my husband from my worries, things have started to change for him.. for the better. There nothing like they were, but hes getting back to independence.
If he wants to drive, he has to call and pay his own car note.
If hes going somewhere, he needs to mapquest for directions, and not ask me every question on earth =).
I no longer let him worry me. And each week I take atleast 1 day for me. I get my nails done, and sit down and eat a nice lunch or dinner by myself.
I could go own forever, because we lead similar lives. I am 28, and my husband I started dating in high school. I love him, and plan to stay by his side. However I also love my self, and my children, and plan to not let his affairs worry me to death, so I can stick around.
I wish you so much happiness Amanda, if you would like to talk more, check out my blog http://www.DisabilityDebacle.com and contact me.
Peace & blessing
Stephanie
Hi again Amanda,
I apologize for calling you Melissa, my mind is so heavy right now =) Im sure you would understand,
I hope you will contact me, then we can speak through email.
Peace, Stephanie
Stephanie, please email me at thecatlady0107@live.com
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