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SaraView Thread

Take care.View Thread
I'm glad that your sister is coming to help you. That is wonderful. Your husband must be grieving as well, but I'm sure that he so appreciates your being there and all that you are doing for him--even if he may not show it. He must be beside himself as well, so don't expect a lot from him under the circumstances. But what you do for him does matter. What a wonderful wife you are being to him. Please keep in touch with me. Do take care.View Thread

I am so sorry to hear about your situations with Ehlers Danlos Syndrome which does certainly sound like a challenge.
Even though I don't have your syndromes, I am fairly disabled from my carotid artery dissection stroke 4 years ago. I can only function minimally through the day due to 24/7 migraines caused by my stroke. Also since my stroke, I need 12 hours of sleep or my migraines get far worse--ER time. I cannot travel. I cannot confirm to go anywhere because I never know how bad my migraines will be that day. Plus many other medical problems and they keep coming.
I think that my chronic pain is causing a bunch of the medical problems, because one of my neurologists said that if my pain gets better, I will see far better health. That's what he has seen from his research.
I keep having more and more diagnoses of other problems and some caused by my stroke. So new problems can come up years later.
In April my mother passed away after being in hospice for 2 years--about to die constantly through that time. I went to visit her nearly every day for 3 to 4 hours. It nearly killed me with my medical problems, but I will always be grateful that I was able to do it.
So we all have our problems from our strokes or our loved one's strokes. It is a challenge. After being nearly suicidal a couple times, I finally managed to come to terms with it (also with an increase in my anti-depressant), focusing on being grateful for what I do have in my life. For being grateful for what I can do. It's a continuing challenge to focus on the good, but it has been my best therapy.
I wish you and anyone else on here the best.View Thread

This must be so hard on you to be trying so hard to cheer him as you are grieving. Don't discount the importance of what you are doing. It means everything to your husband. I cannot imagine what it must be to have your husband so suddenly be in such bad shape.
I just spent 2 years visiting my mother in hospice nearly every day. She passed away this past April. She was originally given 4 days to live. And she looked like it, nearly comatose, on oxygen, needing someone to feed her. Then she kept getting better. Then she kept having stroke after stroke or would seem to be dying. Each time I would heavily grieve thinking that it was the end, but then she would recover again. But that was my mother, not my husband. It nearly killed me to have to spend 3-4 hours almost every day along with my migraines, also needing at least 12 hours of sleep a night following my strokes, or the migraines get terrible--ER time. But I will never regret the time and effort. It was the most treasured time of my life with all the love between us.
Still, you are in such a difficult situation. I can't tell you how sorry I am for you. I will be praying for you and send you my love.
SaraView Thread

I mentioned the swallowing exercises because no other doctors that I saw about the problem had any idea about physical therapy. I believe that I learned about it on this very website. There is a swallowing test that the doctor may schedule you to get. Mine came out alright, but I still had the swallowing problems.
Good luck to you. I'll look forward to hearing more about you.View Thread

There are no guarantees with your father's condition no matter how much love and visiting that you do. But anything can happen. You got a diagnosis of 3 to 6 months instead of being told 4 days to live as I was told. So do take care and I wish you the best.View Thread

Is there a more firm diagnosis for your husband? I hope that your husband is doing better.View Thread

have.
Let me know if you have any other problems since your stroke, like physical weakness, continuing migraines, etc.
By the way, how old are you?
I wish you the best.
SaraView Thread

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