Not sure….
I am not certain if I should write this, but after a day or more of thinking about it, I have decided to go for it. My intent in writing this blog is to speak to the value of this site for me personally, and I think many others.
I hope this blog doesn’t intiate negative comments as there are some constant negative voices here, and often, there is conflict.
For me, this site has been a happy life line. But when the site has gotten negative, with spitting and scratching going on, I have pulled back, and not come in. Like many here, I come here to be safe with like-minded people. Also, and more importantly, I come here for fellowship. As some of you know I live in a very small, remote, rural community. I also have a husband with health issues. He had a pons level brain stem stroke 5 years ago June 17th. Most people don’t recover at all from them, and those who do usually remain in a ‘locked in’ state. That is when they are completely paralyzed but aware of everything. Sometimes they are blind, but they feel, hear and experience everything, but cannot move or speak.
Bob had that for about half an hour when he had his stroke. The doctors in Hazelton, Terrace and Vancouver could not believe he as alive. He has recovered to nearly 100% in all systems, but there are constant reminders of brain damage that can not be cured, only lived with.
Generally, when he is out and about, most folks would never know he is impaired in any way. However, usually his most annoying complaints are those associated with neurological processing. I tell folks he has gone from high speed back to dial up.
There are a myriad of other problems, and he lives with them and carries on when he can. The best advice he got was ‘do what you can do until you can’t do it anymore and then stop, and do it again when you can’. Rather a good life approach really.
This week has been tough. He has had all his fillings in his teeth slowly fall out due to complications from the meds he has to take. We are waiting for surgery to remove all his teeth. We have to drive for 425 miles (725 k) on the 22nd of May for the surgery, but he is in a great deal of pain as you can imagine. If all my fillings fell out, I would be in agony.
He is currently on high levels of morphine to cope with the nerve pain he experiences from the stroke. Finding how to manage that nerve pain took a long time to sort out. Other problems he has include: sometimes losing sight in one eye, but that usually lasts about 20 minutes or so, he also has balance and sleeping problems now too, so all in all, he continues to amaze me with what he accomplishes.
He has recently had a new symptom though, and that is nerve problems in one thigh. He woke up on Wednesday morning at about 5, screaming out in pain from this new nerve pain. Since then, there have been further worrying symptoms that now are nearly continual sleeping and slightly slurred speech with forgetfulness.
With us so far away from his doctor (a 3 hour drive at best)…..I am home today watching him carefully. We can only see his doctor tomorrow so I am keeping our doc posted, and will take him sooner should things get worse.
So, yes, he is having a bad day or two. I am confident that he will be ok for the surgery and after that, with his dentures but for now…..I am watching carefully.
Sharing this all with you is to tell you why this site is SO valuable to me, and why I get upset with the negative that pushes folks like me away. Sometimes for a little while, but often forever.
Please remember that many of us gain a great deal from being in this site, but we come somewhat damaged, sad, lonely and looking for joy and friendship. We have lots of negative, and don’t need more.
Thanks for reading this.
Anurri, you have my deepest respect and admiration. As does your husband. Your love is strong and will not be weakened by these trying times. My love to you both. Jackie xxxx
Well said anurri. I agree 100%.
Anurri, I have never talked to you but I do hope you husband will be alright and get through having his teeth removed. You also have my deepest respect and admiration. Will put you both in my thoughts and prayers. Anne Marie
I really appreciated your blog , Anurri. I can’t even begin to imagine what your husband has been going through. He sounds like a remarkable person to persevere through such trials in his life. He surely has been blessed to have you in his life. Listening to your story, hopefully will put the petty and small minded issues on this site to rest. Let’s hope others will get the inspiration I have from reading your blog!!
Anurri, i look in amazement at wonderful people like you and your hubby, true heros in our world, to overcome health issues such as you have described, would have taken a lot of hard work and courage and for you to be beside him still , supportive in every way as you are, tells me a lot about you, my dear girl, hats off to both of you, will love to see your hubbys progression please let us kn ow in further blogs how things are going , I would love to hear or read I should say. just to lend an ear to you , you probably have many but it is nice to know there are some out there who are kind and caring individuals who really do care about others. have a wonderful day and hope the sunshines on both of you for a very long time love and ((((hugs)))).xxx Lani
Out of all the comments on here, I must say I agree with this one by lani. I am not very good at expressing myself and do not blog. Reading the blogs daily is something I do and to be able to know someone through their own blog and what their life is like does help me when I do go in chat. Thanks for sharing. Take care and all the best, hugs chris, x
I can’t imagine your blog initiating any negative responses whatsoever. It’s brave of you to put your life out there for others to read, but glad you did so we can know how to support you. Ideally now the inevitable debates and disagreements can take place sort of ‘off the main drag’ so that you don’t have to feel the negativity… I know you and your husband have a long road ahead of you, and I hope that YOU continue to gain what you need from this site, fellowship and care and maybe somewhat of an escape at times. Blessings to you both. xo
I could not agree more with the preceding comments, Anurri. Your both deserve everyone respect and admiration and you put to shame anyone who could possibly come up with any form of negative comment. Please keep us informed, many DO care, and this site can and will help many. I know what you mean about pulling away – I have felt it myself and have spoken to others who, sadly, decided that SC was not for them because of what they had experienced or read. I know freedom of expression is good – but sometimes, just sometimes, silence IS golden. take care and know that many will be thinking of you both (((((((((hugs)))))))) Lina xxxx
Thank you for your blog, Anurri. I also understand what your were looking for on this site. I was looking for it also. Some friendship with positive support. But I have to say It might be better to gain that thru making some friends and private chatting or private emails that are also available options after you make them a friend.
Anytime you post something – you run the risk that some in the many will object to something. It is the way of the world. It is not just here it is everywhere.
I will pray for you and your husband and feel free to make me your friend.
wishing you and your husband all the best anurri, such a hard time for you both, prayers for you both xxx
That is more than load Annuri…thank you for letting us know what you are having to manage, regardless of whether the support comes in laughter or empathy or just everyday chat I don’t think there is anyone on here that wouldn’t like and want to make your load a little lighter….oh for a magic wand…sending you both my love and care and as many positive thoughts I can send your way….XX
So sorry to hear the difficult period you and your husband are going through. My thoughts are with you, my friend. Take care. x
No negativity from me Annuri, just love, prayers and positive thoughts speeding your way. xx
Dear Annuri-I can’t imagine why anyone should show you negativity or nastiness in any way. You and your husband are going through truly awful times, you are both strong people, who are to ce commended and respected for what you have to face.
My heart goes out to you both I shall think of you, send loving thoughts, and remember you in my prayers. I hope you find some small measure of support and care on the site.
Maisiex
wishing you and your husband all the best sweetheart.
Your husband is blessed to have you for a wife. So caring and sticking by his side in sickness and in health as the vows say. Xxx
Annuri my dear friend, as always you know my thoughts and prayers are with you and hubby, especially today as you travel. Hopefully the doctor will be able to give him some relief from his pain and anxiety until he can have his surgery and begin healing. Your strength leaves me in awe. xxxxx
Prayers and thoughts here for you annuri,…as re; the negative comments,and micky takeing,….it’s not nice!!!,i wrote a blog about a neighbour who has made my life hell for over a year,all i wanted was some advise and support,..to which i got,.LOL,LOL,hahaahahahha,so i asked Rob to remove it,….nip it in the bud so to speak,….as i dont want to add any more fuel to there fire!!!….but as the saying goes what goes around,…..comes around!!…..
praying your hubby makes it thru this newest crisis and get some relief from the pain…any time you just need to vent i am just one of the many who are here for you…..tc xxxx
Mary. I knew you were an awesome person! Love your humour too!
My deepest thanks to you all for your wonderful supportive comments. We are just back from our trip to Bob’s doctor 3 hours away. I am SO GLAD we went. The fabulous news is it was NOT a stroke, but a muscle spasm that mirrored stroke like symptoms. There was a wonderful accident in all this. Last night,by my giving him something to help with the stress (the doctor suggested it) we have discovered a combination of meds that has reduced his pain and allowed him to sleep. So, the trip down was a little stressful, but the long visit with the doctor sure was great. Bob is exhausted now, and I tucked him in before coming on to tell you all what a great day we had today.
We had an amazing experience on our trip. We saw a black wolf. A real beauty, big, rich coat and gorgeous tail. We also saw a very healthy black bear.
Again everyone, thank you. Your comments have helped me so much. I should have done this a long while ago.
So, for those of you in similar situations, troubled by worry or stress of some kind please trust the people here. They are wonderful folk.
I will keep you all posted as we go through the next chapter.
Cheers,
Anurri
I’m really pleased for you both. God Bless!
I recently attended a very informative meeting at which a neurologist spoke enthusiastically about brain damage and HBOT or Hyperbaric Oxygen Therapy. Some remarkable results have been achieved. Have you explored HBOT? Best wishes, OB
Yes, thanks OB, we have considered HBOT. That was in the first few months after the stroke. But, as time went by, Bob recovered SO well and was able to do most things, most of the time, HBOT was no longer considered. Besides, we live 1200 k from the nearest place for the therapy.
Thanks for the suggestion. I hope someone else on here reads your suggestion and benefits from it.
Cheers,
Anurri
Anurri, thank you for sharing your situation. We need to see each other as real people. So glad that the doctor’s visit turned out helpful. Take care of yourself as you do for him. Caretakers give so much of themselves. Blessings to you both. Linda
Anurri, so glad to hear the doctor’s visit went well. Thank you for sharing so much with us all. Keeping you both in my thoughts and prayers. xo
I’m so happy to hear something positive come out of something so challenging, Anurri. Wishing you and Bob the best and keeping you both in my prayers. xxxx
so sorry you are both going through this. It’s so hard to watch a loved one suffer. That’s your world and you want so badly to make it better. See him completely surrounded in ice blue light which cuts through all imbalance and is very healing. If nothing else, it will give you some peace knowing there is something if just a little thing that you can do. I ue bue light all the time and it helps emotionally and physically.
Thank you again everyone. We are both a bit weary today, but less stressed by far. Now for the next part of the journey. Having surgery on the 22nd. We have another medical trip on Tuesday, so I will keep you posted. Your kinds words are so very helpful. Bless you all!
I am so glad that our words can be a source of some comfort to you, Anurri. I hope you get rested up for your medical trip on Tuesday. I hope you have a safe drive. Please take good care, and thank you for keeping us all up to date. Hugs to you ! xoxo
Dear anurri I am so glad that you posted this blog so that your friends can know what you and your husband are going through. The wonderful friends who have posted here for you far outweigh any negative people on SC, so please just ignore any negativity and be supported by all the wonderful friends you have here on SC. It is very hard being a carer and the carer usually doesn’t get any support or much support, and though we cannot support you physically we can support you emotionally to try and ease your burden. I was so glad to read that your husband has gotten some relief from his pain. I recently had one filling fall out and that was very painful, so I can empathize with your husband with the pain that he was experiencing be it far more than mine, along with his other complications.
Please know that we are all here for you any time, and my prayers are with you that you will both find some relief very soon. Take care xoxox
So very pleased to her you have some good news – you ave both more than earned it!! And to see a black wolf !!! wow, one of my favourite animals.. – al in all, a tiring trip but one that was obviously well worth while… please do keep us posted, as you can see – people DO care…. (((((hugs)))))) Lina xxx
I am very moved by the support folks. Thank you again. I will keep you posted on how things go tomorrow. Bless you all!
Our trip to the denturist yesterday was very successful. All went well. So, a week from now, it will all be over!
I will keep you posted good people.
I am so happy to hear that today’s visit with the dentist went so well, anurri. Keeping you and your husband in my thoughts and prayers.
Only a week, after all you have been through, that will soon pass. Anurri – you are both so brave. Thanks for keeping us up to date – many will be thinking of you both with love…. ((((((hugs)))))) Lina xxx
I just read your post, a bit behind everyone else. I am glad to know more about you, your husband, your life together. It’s an inspirational story, but am so sorry about the current added difficulties. The other things you shared are so important too, about the powerful impact that attitudes and words have here (or anywhere), whether negative or positive. It was brave of you, Anurri, to put yourself “out there” and share from your heart. Thank you.
P. S. And I just read your great update! Such good news.