HostTracy

Hello everyone I just wanted to invite everyone to come and join in at Room #2 Stroke Survivior Chat. I will be hosting Mondays and Wednesdays from 3-4 EST! 🙂

😂You guys are the best! Nothing like a dose of good humor early in the morning!

Looks very effective. I gotta big butt so I guess that would be my question lol. But there are days when this looks to be perfect!

Pam I love how you think things out. Oh the inner child...call her to come play often. Sometimes she is stubborn but she only knows to bring with her the good feels. I like my inner child 👑 she brings bravery with the simple gift of freedom to feel joy. It's pure, it comes from the heart. So I say bring out the colors and make beautiful art until your heart is replenished!!

Pam I know it may feel rude. I don't feel that it is rude "to think". We as survivors usually know when people are genuine and have empathy and understanding...care. Resentment is something we all have felt. My best answer is don't let resentment bring out all the negative. Try to focus on positive. Realize how you feel, accept it (which is the really hard part), and then file it away and feel your inner validation. I'm a believer in changing a circumstance that elicits my negative side...that sometimes may make others feel uncomfortable but you have to advocate for you. So I sing "Let it go! Let it go!!!". Nothing is important enough to compromise your inner happiness.

Yes it is a healthy bit of assertiveness. I have never been hugely assertive but I always wanted to embrace that because you are listened to a little bit different. I've seen it move mountains. I want to move mountains. Sometimes now I feel like I do. I think that it is good for me...others look at me kinda unsure of what to think. I own it more and more every day. Kicker is I am still truly nice...assertive doesn't = mean.

I don't feel you are rude Pam. I know others may think that because I'm sorta the same way. I have had to change the way I feel about others disapproval of some things. I don't give a hoot. 😳 Now that may be rude but man it saves my self worth and helps me have a voice when others think I don't. I'm uncomfortable speaking in a group too, my only experience since the stroke is support group. Thankfully, they are all so patient and listen. I really like going. I have on occasions not in my group, made it known that I have a mouth with something t😰o say. Sorry emoji issue. I'm afraid to say it has not always come out calm. I too get frustrated when I'm on a thought and I'm trying like he'll to get it out and someone tries to finish my thought or disrupts my focus on said thought. 😓 I have been pretty vocal after. That said, I can't help but feel I have to make my point for fear of losing it forever in the lost thought realm. I conditioned myself not to be too hard on myself because of it. That's my 2 cents. 🙂

Smart advice...I tend to let phone calls from numbers that are not in my contacts go to voicemail. Being caught off guard really affects my being able to communicate my thoughts. 

Yeah spelling sometimes it sucks. This is my way of saying I spelled wrong but am too lazy to fix it even though this probably took longer. LOL

Thank you ladies for the understanding support. Heather I agree....if someone wants to go there with me then stand back I'm coming. I have at times felt guilty but I am patient...I can stay calm usually when I know someone is in the dark about my certain difficulties and when I get a chance I will let them know and what would help like talking slower and being patient with me when I give answers. But I do have a limit. I sometimes feel that I can't keep up or am talked over because I have trouble getting words out. I have been known to bring out a lion (like Pam has said become big) when I am pushed into this corner. At this point all niceties disappear  and I can be down right loud, mean, and mouthy. I don't feel the guilt anymore, I have decided in almost 99% occasions you reap what you sew.  Thankfully I still retain sweet reasonable self once I calm down.

This reminds me of about three days ago when a debt collector called. 

Medical bills of course and actually the hospital where all my doctors are affiliated has me on a Patient financial assistance program. But it seems that it had run out and I needed to reapply. Anyways, the lady called and was rude from the beginning and was talking so fast. She caught me off guard and I don't do so well with that. I sorta got to stuttering as I tried to explain that I was on the patient assistance program. She kept interrupting me and I couldn't get out what I was trying to say. I finally got out that I had a stroke previously and could she slow down and let me talk. Well she just said she didn't care that I had a stroke I was still responsible for paying the bill and what would my payment be cash, check, card. Then she proceeded to grill me about how I was supporting myself for 3 years unemployed and why I had been seeking disability for so long. I tol her that my mom pays for my medicine and I live with my dad and I buy my food with food stamps. She said....why don't you get in touch with your mom and see when she can pay it. Ok I had had enough...mean Tracy kicked in. I told her very bluntly that my mother was not responsible for my medical bills and that they could do whatever they had to do to get it from me. I told them I was not setting up a payment plan with them as I am unemployed and that I have 0 cash, no checking osaving account, and no credit cards. I told her I would not discuss it further and hung up the phone. So when I get really #^*£<% I can get out what I need to say better just not as nice. Lol. Witch.

I'm smiling, I do the same thing Becky. Sometimes I tell a person right up front that I had a stroke and at times I stutter and can't get out what I'm trying to say so bear with me. To my happy surprise 99% of people are very positive and understanding. Now that does not necessarily take my frustration away if I do have trouble but the other person is typically very patient. Unlike you and Deigh I can talk to people on the phone but I am very well known to start out with the same explanation and get the usual positive response. I realize it would be awesome if my speech mimicked my written words...LOL I'm pretty good at writing my thoughts isn't it weird how that works. I totally get why email makes a lot of sense Becky. My daughter is sorta unsure how she feels about my forthcoming when I first speak to people. She has asked me why I do that...suppose I am just trying to reduce the frustration I may encounter. Call it using the stroke card lol. Smiles, I can very much relate to all of you. Don't take my smiles and laughs in a negative light, I get the same frustrations...I suppose it has become my way of dealing with it especially when I am not getting through to someone. It can be upsetting but I can also laugh about my own experiences like a sort of inside joke I guess with myself.

Pam I love the way you tell your "things".  I can very much relate the moments and feel your frustrations and then to me it comes through with this humorous sarcasm that I love from you. Please don't take what I say as a negative because it is a compliment. I have felt heartache, frustration, anger, hope, relief, and a multitude of other things in your posts. Sometimes I feel like ®[]»]]%° to all of those fools who think they know you and can speak for you. God bless your strength and perseverance.

Wow I am so energized when reading these posts. Thankfully my stroke which happened on both sides of my cerebellum sorta evened each other out. I am able to move my arms and have no numbness but I do have a loss of finger use and grip. Just to think I felt how hard it was to pick up and make my fingers do what they were supposed to do especially hold tight it is nothing compared that you guys have overcome and so much more. It's motivational to see that so many are here with another great idea to help and it seems as nothing gets in your way if you keep at it. I am glad I can read this board and triumph with you (I think I can be a good cheerleader even from afar when their is something to cheer about!) Thank you!

Also do a search on Raynaud's Disease Clothing and it brings up a multitude of sites with lots of different ideas. I just did it and am going to poke around a bit and see what I can find! 

Becky I really like those gloves. I purchased an inexpensive pair where the flap would come over and make a mitten. They couldn't hold up and broke after just a couple of uses so I took them back. But if I put more effort and maybe paid more I think those gloves are fabulous!

Donna I have had the painful cracked heels many times to and it is so uncomfortable. The best thing I have found is to keep both my hands and feet as moisturized as I can. It doesn't work 100% but has cut down on the quantity and length of time to get it healed. It's a mystery illness to me most of the time I don't know why or what I can do about it. I try to stay calm cause my anxiety can bring on attacks. I just plain hurt in the winter and I feel like that is the most I can say about it.

I had a pretty even bilateral stroke so both sides are still affected the same. I'm not really sure if mine has gotten worse we are just now getting into winter and I don't remember much of last winter. I do know it is still there. We'll see how this winter goes.

It's Donna right? I have Raynauds and I understand everything you are saying. It's been in the 20's here for a couple of days and it kills me. I can't warm my hands or feet and I feel bitter painful cold down to the bone. I wish you the best I know how much you suffer. Mine started about a year before the stroke maybe not quite that long. My fingers have cracked all winter before and my thumb and another finger just would go numb for days at a time and look blackish blue or white like they were dead. I absolutely hate the winter.

HI Wendy I had a ischemic stroke last year the day after 4th of July. I really get your attitude toward the Holiday that reminds you. Same for me, other than me being overstimulated by all the booms, pops, and bangs it is a stark reminder of THAT day. The fears and worries felt when you have a pain or headache or whenever are very common at first but they do get better and better. I agree with the others that keeping busy doing what you like is a great way to overcome those fears. All the members here are very welcoming and have a lot of knowledge as well as experience. The good thing is that we understand without explanation many times what you may have found difficult to describe and try to help others understand. It comes with comfort and validation. so welcome and feel free to talk, ask, vent or whatever you would like.  :welcome:

Hi Rick I have somehow missed your post and I just want to welcome you. I had my stroke last year the day after 4th of July (cryptogenic bilateral cerebellar stroke). 

This is great place where people get you and everyone is so nice.

Thanks Heather I am thinking the same thing. I have just come to the conclusion that maybe we are just thinking about pretty stressful stuff and we handle it differently. I am just really going to concentrate on my inner happiness. Keep busy doing some small projects I have planned and quit waiting for it to be perfect. I think I have learned a lot from this stroke and one of those things is that we are not perfect but we are different.

I honestly don't know what he thinks or realizes. That's a horrible answer but I don't have a different one. All I can do is be appreciative for for the things he DOES do and then focus my happiness and needs on me. I don't know what else to do.

Well the possibility for hope may not exist in this issue. My husband and I had a sometimes heated discussion this morning. I asked him if I could read a list I had posted on Scott's thread about better ways of communication with someone you may know who has had a stroke (or brain injury). His answer was "Not now Babe My head is not in the right place to get into to all this stuff with you right now." I was a bit perplexed but I just said ok and then waited a bit before I asked its' meaning.  Basically his answer was we are both concentrating on very different things right now and I can't let you forcing me to put my energy into what you are thinking about take away energy I am putting in to what i'm thinking about. Perplexed again. I asked him if he was upset with me this morning (I can sense his moods I always have been able to). He said no I'm not angry but I asked if you could make pancakes this morning and if we had the stuff to make them. I told him that we didn't this has been a really tight week for us, trust me we have nothing exciting and extra. He said sometimes I just want to have pancakes when I feel likee eating them. As far as money, you knew I got paid this morning. I asked him if he was upset that I didn't offer to run out and get pancake mix because he wants pancakes and what does that have to do with what I wanted to show you. He told me that he's not upset. That he is just concentrating on what he has to do and I have a whole web site to get support from and he is doing this by himself and he doesn't have time or energy to spend on anything else. So I asked what he is trying to do. He just looks at me and rumbles what am I trying to do??? I am trying to keep us afloat. Period. This was a very long and complicated conversation and for fear I will write a book again I'll sum it up. Basically he says he prioritizes things and that keeping us afloat is the most important on his list and it is taking everything. He explained to me that my "feelings" or "emotions" that are about the stroke or from the stroke are not something he can put his time and energy into right now. I don't have any time for altruism. He can't fix me. I already get support from all sorts of Doctors. He forgos his own health to make sure i get to my Dr. appointments and have my medicine. Basically we are both different and we don't think the same. As far as feelings and emotions he doesn't have time or energy for them. I don't know what I think much less feel about our conversation. My next question might have been did you hurt small animals when you were young? I'm just trying to be humerous (it's a nervous habit).

We talked about it this morning so I think he maybe will look. I'm ok with showing him anything I have written about and let him see responses. I told him the only differences is we have had different types of strokes so different types of effects but that a lot of what we go through is very similar. You and I know that we can relate and we've had strokes in different areas. I hope he chooses to. I think it's good to see that we care about our loved ones and caregivers too. We know this affects all of them not just us.