Roxy, I am glad you are feeling better. I do not post much but I have become addicted to reading about your life. What I am going to ask you will not make me very popular with this message board but there are a few things that just do not make any sense to me, so here goes.
If you had a stroke, WHY are the doctors not being more proactive in determining the cause and trying to prevent another one? Are the doctors that incompetent???
Now here is the big question. I know you have said that Brett reads the things on this message board, Is this the way you are communicating with him now??? Is it your way of letting him know how much he hurt you by leaving??
I guess I just have a difficult time understanding how you can do the things you did the other day, when I can not even clean my house, go out for the day shopping or garden which I really miss.
I am glad you feel better, but please follow up on the stroke it is serious business and usually if you have one you can have another in jut a short time.
Sorry if this comes across wrong, but I just had to say these things.
i have been wondering the very same thing. It just doesnt make any sense to me. How can you be so weak that you cannot look up information on the internet about a stroke, than go out and be able to run around town? i am just trying to understand myself.
kelly
I am wondering the very same thing.I felt bad posting this, but now I am worried I will have a stroke because of all my medication and RA, so I hope she is not just playing on our sympathies.
It has kind of bothered me all the time she has posted how she has "Agressive severe RA" and can not walk but seems to be able to do alot of things I can't like garden, walk the dogs, clean the house, even after a stroke. It makes me feel like maybe I am not trying hard enough because if she is so severe and can do those things why can't I?? I also don't post much because I feel crappy, but she seems to be able to really write novels.
I really don't mean to come down on her, I just hope she isn't using us because we really grew to care about her in her posts.
I feel really terrible about this, but I just felt I had to say something.I have posted with questions and not gotten nearly the responses she gets with her drama!!
I havent had any stroke symptoms ever since RA DX. I had a stroke so I feel I would be aware.
We are all different. Some people have good days and bad
days. Some have mostly bad days and once in awhile get a good one and just go
for it. Hey, I can’t blame her on that one..
However if you had a mini stroke it is not impossible to go shopping the
next day.
It really doesn’t seem like Roxy had a stroke but I really
think she might have been mis diagnosed even though they said her scan indicated a stroke.So that’s
what the doctor told her I don’t count on doctors to have all the answers.
Most people get meds to thin the blood at least for awhile after a
stroke.
I can’t understand that her family didn’t come to her aid and watch Kelsy while
she was in the hospital??? She has mentioned she has family there. Usually, If
they suspect you having a stroke you don’t get to go home, you stay for
observation. How crappy could her family be?
Roxy, What family do you have living nearest you?
I really have good days and bad days and realize ALL of us are different. But Roxy has posted how aggressive and severe hers is ands it does make me feel that maybe I am not trying hard enough. I am sorry but I feel I should be able to vent on this forum also just like everyone else.
You may not agree with my venting and questioning, but that is my thoughts so please don't ridicule me for mine either.
I lost a dear loved one to a stroke that went undiagnosed and then was followed by more severe ones, so I want Roxy to get help if she had a stoke, I think it is very important.
I know she is going through alot right now, many of us on this board have been through divorces and messy lives and are just doing our best.
This board seems to be very clickish which is sad!!! People come here for help , support and advice from people going through the same disease. I have gotten more responses to this post than any questions I have ever had. How sad is that!!
Sorry if you feel I am "stirring the pot". I guess since I am not one of the "in people" anything I say would seem bad. I repeat that I. have already said I was sorry and felt bad about thinking that anyone would look for sympathy from us or their husband with this forum.
It is just a very serious subject to me and I want her to get the care she needs!!!
I am not stirring the pot.Bookworm,
Please re-read my post. I never said Roxy was not rying hard enough, I said that when she talks about all she does and posts that she has "severe agressive" RA, That it makes ME feel like I am not trying hard enough. I have been a member for 4 years but because of login issues it shows less, I am sorry if you misunderstood. "
Daisy you are a good egg.
Now & Then,
You are right, Roxy has shared her whole life with us and I have followed it from the beginning of her posts as I think a lot of people have. I felt since she was open to sharing her life with all of us then she would not have a problem with the questions I asked. I am sorry but as I said I lost a loved one to misdiagnosed and mistreated strokes and I hope that doesn't happen to anyone else.
So I am not trying to mean, just trying to understand, why a doctor would be so incompetent not to get her into see a neurologist immediately. I also have been through a 22 year abusive marriage and understand completely the stress she had in her marriage and how it was making her ill and even though it is a relief when it ends it is still sad.
I think it's a very serious subject too; and would again like to appoligize if the term "Mini Stroke" was used incorrectly. I mean it's a slight stroke? A possible warning sign of things to come. I've heard other's refer to them as that so that was the reason I did. I shouldn't have used that term without understanding it was incorrect.A "mini stroke" is usually a TIA or Transient Ischemic Attack which has the signs and symptoms similar to stroke but last one hour to up to 24 hours. It occurs when the blood supply to the brain is briefly interrupted. Aspirin is often used as a course of treatment for a TIA.
TIA is a warning sign that a person is at risk for a more serious and debilitating stroke. many strokes can be prevented if you listen to the warning signs of a TIA. Lifestyle changes such as eating right, daily exercise (no matter how small the amount), limiting the consumption of alcohol, not smoking, take meds prescribed to you daily, manging and lowering stress, are just a few of the changes that you can make to prevent a larger stroke.
I treated many people that had TIA's when I was a paramedic. They are just as scary for people as a larger stroke would be without the permanent damage a larger stroke can do.
Hope this helped everyone in understanding what a "mini stroke" or TIA is. And how it was possible that yes, someone could go shopping so quickly after one of these.
We all have good days and bad days. And sometimes we push ourselves on those good days because we just don't want that good day to end because it just feels so darn good to feel good. I find that for me, if there is a large amount of stress at home, that I need to get out of there for a bit and just do whatever. Hopefully I am having a good day when that happens lol. Or I'm stuck zooming around in the electric carts playing Bowl Over the Stupid in Walmart. But hey, at least it is out lol.
RA is just such an individual disease on how it effects us. Then let's add in all the meds we take for it. Here comes a really down day for me after mtx shot. The next day I feel much better. I do not work out of the house so my only job is housework and kids. I have days where I can whirl thru my house like the tasmanian devil and clean it all and then some. I have days where doing the dishes is a dang chore I am dreading. Unfortunately, there is no predictor for us on when these days are going to happen. It would be great if there was. No one should ever feel they aren't trying hard enough or doing enough or just whatever in comparison to another person with RA. Our bodies are different, the way the disease can affect us is different, everyones meds are WAY different (don't forget all those dang meds from the spin off crud we get from the RA), and the way we deal with this in our personal lives is different. This is by far not a competition on who does what and how much they can do. I prefer that no one here pushes themselves over their limit and then feels really icky the next day.
We should applaud everyones hard won accomplishments and empathize with them on bad days. No matter whether it is something good that has happened with someone or if they are having a bad day, we should be there to support, and courage, cry, hug, smile, etc. when someone needs it. After all, this is a support forum and support does come in many many forms.
It sounds to me like she had a TIA. I asked Roxy in two different threads,I've got to say something. Roxy was one of the first people who welcomed me to this board when I joined 2 yrs. ago. She is a outdoors person and likes to stay active. RA has taken that away from her and it's been a hard adjustment. This disease is hard to cope with as is and questioning or being negative doesn't help. We need to respect and give support to each other. Remember, not everyone handles things the same.
Finally, if people invite us to share in their lives, be kind and listen to what they are saying as it isn't up to us to judge others actions. We all must send positive thoughts and words to each other.
May all have a good week filled with positive vibes.
Marisa, if someone asks me a question, I always answer them, no matterI am happy to answer your questions. My stroke symptoms were tremors, electrical shocks (at least that is what they felt like) hearing chains in my head and weakness. At one point the left side of my face went slack. I spent three days in bed but the fourth day, I think it was, when my aid took me to doctor to get meds. It was the first beautiful sunny day. I was weak and the chains in my head were still there but I was just high from not being home wondering when I was going to die. There is no paralysis from the stroke. So all I can tell you is I went to a couple stores (not gardening) after stroke and cleaned my house - which with Brett getting his stuff off the floor only meant cleaning up my few messes and dishes. Kelsey vacuumed and we did dishes together. It did not take much to get house clean as aid has done some - not much housework. When I say I cleaned my house it was the livingroom, bedroom and kitchen - period. Percocet makes me wired so I felt energetic and I always have cleaned when I am stressed.
As far as Brett reading this board, I think it has been a year since he has except maybe two posts I begged him to read. He had no interest. In fact, he took very little interest in my RA and would say anything he needed to know about RA, I would tell him. Also, he only went to two doctors appts. with me as I could not drive. When we went to the thrift store, I could not even carry the stuff I was buying, my aid did it. That is all I can tell you except I have found I have no desire to talk to Brett. I left message with his family to not let him call me as I am frightened of stress so near my stroke. I didn't want to get upset. Being with Brett on drugs was hell. He was yelling all the time and complaining about taking care of Kelsey and I. Since my stroke, my family has come down three times to help around the house and my aid twice. I am pretty blessed.
I can see your suspicions. I thought when he told me I had a stroke he would put me back in the hospital. I was shocked when all he said was avoid strenuous activity, stress, get off ra meds, and take aspirin. He said there was not much else that can be done. The damage is done. I was lucky, it could have been much worse. I have felt better day by day because I had no idea how stressful it was living with Brett. Even Colton, the house is quiet and so much more peaceful. I feel less stressed. I even went to Easter dinner. I did have a hell of a time making it up the stairs where dinner was at. The day after, well for a few days after, all I did was rest and feel fear I was going to have another stroke and die. I could not research as my thinking was effected and comprehension was very poor. Reading also hurt my head. Thank God, I had that day out to appreciate life, accept the stoke even though I can't wait to see a neurologist and move on.
Brett does not even know the name of this board. He will never come here again I am sure. I also am sure he has gone way downhill. He is really really abusing drugs I have heard. Very messed up all the time. I don't wish that on him but that is the choice he made.
I have not read all the posts on this thread but I will go back and do that and answer any other questions. There is no medicine for a stroke unless you have high blood pressure which I don't and I don't need pt as I am not paralyzed. I am feeling better every day. The peace and quiet and help from people has been wonderful and I feel very lucky.
There is no IF I had a stroke. It is VERY obvious on the cat scan. As far as gardening, one day I sat on a retaining wall and dug 1/2"down and planted seeds BEFORE THE STROKE. When I got knocked down and sprained my ankle trying to do a stand there, let the dogs run walk, was BEFORE THE STROKE. Real dog walks - it has been about a year. I go to the park with my walker or cane and stand on the grass and my dogs GO. They take off, when they are far enough away - I call them back and then say go play again. That is my dog walk. I can't walk around the block, I can't use a shovel or lift anything, all my doctors say my RA is aggressive as I have only had it less than three years and have so much damage. I also am unable to do what seems like most things. Maybe the misunderstanding is my personality. I have always been hyper. It is hard for me to sit still so I do what I can do. My "go shopping" was stopping at a thrift store and saltwater fish store using my cane. Mostly I use the carts or others shop for me. I love it when I can walk and I walk whenever I can walk. It is not far or often
As far as my aggressive RA it is determined by the fact that every time I have MRIs more damage. I have damage in my feet, ankles, knees, hips, wrists and hands. Also my blood work. It is also considered aggressive because the meds have not controlled it and it has been really debilitating. You did not know me before. I truly was in super good condition and the change in me is pretty depressing. I will say this thread was pretty depressing. I share so much about myself here and have always been 110% honest, even when I did things I was ashamed of. I never thought that honesty would be questioned. Maybe I am sensitive because it has been such a stressful week, but I am hurt and want to cry that people could question what I shared. I will tell you, not having Brett here yelling all the time and me feeling guilty for not doing more, has done wonders for my stress level. It is good Brett leaving and the stroke coincided because I probably would have had another stroke if I had to come home to the tension that was in this house. I am scared I am going to have another stroke. My family and I are already addressing how to take care of Kelsey and what I want done as far as funeral and possessions. I have never talked about that to my family.
Lorster - I am sorry if you are offended but I have spent little time on the board and only read posts to cheer me up - being selfish. I did not think it was a TMI because that is not what the catscan or doctor said. I don't know the answer. The sad thing is, I am so loyal to AI, I never thought I would be attacked like this. I have been light headed and my reading comprehension is poor. I hope I am reading more into this thread then is there.
PS I came to the board tonight for encouragement as I don't want to die. I get scared when I am alone and this week "hits me". The possibility of having another stroke and the possibility of losing my house. Now I feel stressed. I feel like my friends turned on me Thanks Kiwi. I agree. I have had wonderful people support me on this board. I sincerely, absolutely believe this board has saved my life. I have not done a very good job coping with RA. I know that it drives people crazy that I push my limits but I just get "high" when I feel better. I can have fun painting the bathroom or working in the garden - even though the next day is a down day. My fun has always been very active - so taking it easy is not very fun for me. Thanks again for your post. I really do feel sad about how people have interpreted who I am.
take care
Gosh Roxy, Im so sorry to hear about what happened to you. I will definitely say that you have always been there for me and my problems. Deanna and Lovie too to name a few. I appreciate your help. This board is so wonderful to me. I dont post much but i have been around off and on for years. When I read negative posts it just makes me so mad and I respond in a defensive way because alot of people on hear help so many people out with their problems and they dont deserve to be attacked. Please get better soon!!
momof3
Why is it that a few people here are like vultures preying on the vulnerable. Roxy has enough on her plate from just having gone through a broken marriage
Thanks Cindee, Mom of Three, Cassandra - How could I have been misdiagnosed when the basis for my diagnosis was a Catscan. I have to say I am feeling so hurt. I guess I am thin skinned right now. I was chased off another board for being misunderstood and I am just not able to handle malicious posts directed at me as I do come here for support. I am sorry that my life seems like such a drama. I know it does and some of it is self inflicted by being unable to spend weeks and months in bed and being so co-dependent in my relationship with Brett, my fear of being alone with this disease. To those of you who choose to attack me, pick on someone else. I don't think I have been anything but supportive to others and I have trusted that I can be honest and open here at AI. I have so much fear right now, my self esteem is fragile, please don't take your frustrations out on me. Some of you may be right on and really have gotten to know me but obviously some have gotten the wrong idea about the kind of person I am. I am not judgemental and I like peace and harmony. I don't know why that has been so hard for me to achieve but I sincerely wish it for all of you. I apologize I have not been reading posts thoroughly or checking other threads often. I really have been worn out and reading has been difficult for me. Please don't chase me off AI. It is my foundation when I need support and I do not want to burden my family who do not understand RA. I come here because you do and always give me good advice and have shared a lot of love with me. I cannot sleep as I feel like I have to redeem myself. That is not right but I am very protective of my second home - AI and would hate to not feel welcome here.
PS I am calling my rd and see if she can get me in to see a neuro sooner. I hope she says I can still take Humira. I am overdue for an injection.
Roxy
Please dont think you have to answer to anyone but God....and God will see you through all these trials. I support you 100%. No one has the right to judge anyone else and thats the bottom line. I work alot with Domestic Violence and you have taken a big step for yourself and Kelsey....dont let anyone judging you get you down. We all need each other for support and friendship and you have mine.
Hi Roxy- I hope you are feeling better as each day goes on and that your symptoms ae improving.After reading this post and another about your stroke I think a lot of people got confused with regards to a comment you made but on your part I think it was just the way you worded it.
I had declined Easter dinner tomorrow but who knows - may be I will go. I don't know if it was a mini stroke Lovie. They didn't call it that but the scary thing is - so many of our RA symptoms are stroke symptoms. Breaking out into a sweat, fatigue and more but too tired to think now. I love you Lovie and I do listen to you. Don't worry about telling me to put the brakes on - you know it will never stop me but it does make me pause and slow down.
I am not confusing the genuinely nice people with the likes of the nasties though, they were just down right idiots who were just out for some cruel jibes.Take care of yourself
If you could look into my life, if I could look into yours, how many fingers would be pointing?
"Lovie" this is not meant for you and for all the others who love Roxy. You only want the best for her. But for the ones who get,I don't know what, satisfaction maybe, from squashing someone's spirit, I'm asking you, why? Are you happy now? You've made her feel bad. She's going to feel badly about this board for awhile now. Did you get what you wanted? Well, good. I'm glad you're happy. Too much drama for you? Too late for that. You're on the wrong forum.
I'm sorry if this sounds too harsh.I'm just a little bit angry. It's probably falling on deaf ears, but couldn't we just all put ourselves in one another's shoes before we write? Think about how it would sound to you, if it were spoken to you? Advice given with love goes a long, long way.
I'm angry too. But won't display that here because there is little use.
Roxy; it's going to be hard to do when those post are link here with your thread, but try to ignore it.
You've got a lot of support here and just a few that are jealous of your support. Try not ot let it upset you right now....that's the last thing you need right ow.
I hope you are continuing to take it easy.....you really do need rest.
Keep your chin up.
Lovie - It will take a lot for me to leave this board. Who would I have my coffee with