Grannyjudymac72

Stroke Caregiver - female
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Blog Entries posted by Grannyjudymac72

  1. Grannyjudymac72
    Its been a long time since I wrote. Life seemed to be just too busy to sit down and write thoughts and feelings. A lot has happened since I wrote last year. I just went back and read my last blog in March of 2015. A lot has happened and a lot has not changed. Raymonds condition has gotten worse in a way, but his life style is pretty much the same. We stopped acupuncture once it stopped working. His yearly therapy money ran out for a while and we got through the summer, which was hard in a way. He wanted to do things outside that his body couldn't do so I had to do them. He would be angry if things didn't get done, so I did them. I am not a man, but I did a lot of mans work. Until I couldn't and I hired a lawn service which is wonderful. We have five acres and the service takes care of our lawns, our trees, our gardens etc. The fee is not as unreasonable as Raymond thinks, but he doesn't like to spend money. But we now have a yard service. Many people have asked, why don't you move. Raymond loves all of his barns, shops etc. He has many buildings full of his "treasures" including three Corvairs which have been restored for the grandchildren. Even though they are just 8,10 and 12. All of the "things" that hang out in all of his buildings are his soul, so getting rid of anything or moving is out of the question. He cant have a normal life anymore, so I won't take his love of his treasures away from him.
    Because he has fallen so many times and because walking has become a huge problem we are in the process of getting him a power chair. It takes a long time to get one through medicare, but hopefully in another month he will be able to get around easier. I have to hold onto him at all times when he walks.
    One great thing that has happened to me is I can now "sleep". They found out that I have sleep apnea and I do sleep now with my Cpap machine. Best thing ever! Getting 6-8 hours of continual sleep is a miracle.
    Raymond still sleeps most of the time, other than when we have appointments, and I have given up on trying to get him to move more. My sister-in-law said something this morning that never occurred to me. Sleeping is an escape and I never thought of it that way. He still thinks either a doctor or a therapist will "Fix" him and I cant convince him otherwise, so I just let him think that. He thinks someday he will just be better. Is that common?
    Well that is pretty much it for me now. I hope this wasn't too long. I hope I can come back to you all and share. Hugs, Judy
  2. Grannyjudymac72
    Well hello there dear friends. It's been a long time since I sat down here to write. I received two emails today telling me Happy Anniversary. A year ago I signed up here and was pretty faithful in reading and writing. But then I got all caught up in life and recovery. It's been a long year!! Some highs, lots of lows, but life it good. As you see we both survived this past year. I have learned many a thing in regards to life and learning. I became the man of the house (a shock) at how much our husbands do that we take for granted. Good grief, just the little things that I have had to take over that I had no idea was so physically intensive and time consuming. I have always taken care of the home, the cooking, the bill paying and when Ray needed an extra hand outside I was willing to give him a hand, as it was only for a small amount of my time and energy!! But boy has that changed. I won't even go into detail about the man things I have learned how to do around here. Out in the barns and shops and gardens have become almost tolerable for me now. When I first had to go out into the shops and find things and move things and maneuver him around so he wouldn't fall I was very uneasy physically out there. Oh boy yes do I get tired and wish magically there was a man person who could come out there and help me. But that hasn't happened too much yet, so I just take it one day at a time. One of the main things I have learned is to give a lot of it to God!! And most of all I have learned to allow Ray to heal or improve at HIS own pace, not mine. If he wants to rest instead of exercise I let him. That was a big step for me.
    I am learning to take one day at a time now and if it's a good day then "yeah". If its a bad day, then it's just another bad day. The main thing is that Ray is alive and I love him so much I will continue to take one day at a time and be his soul mate!! And to continue to pray for his recovery.
    I have babysat three of my wild and woolly grandchildren a lot this summer and they do tire me out. It seems as though they are hungry every hour!! Hahahaha. But Ray gets such pleasure out of them being here that that's worth the tired I get. They bring him Joy! And a man recovering from a Stroke has very little joy.
    We had to take the summer off of physical and occupational therapy due to a cap in Medicare, but hopefully in a month or two we can start again. That will be a big help.
    So my friend I say "hello" again and know that I am doing okay. One day at a time, one step at a time (whether it be one step forward, or one step backward) its still one step at a time!
    Hugs, Judy
  3. Grannyjudymac72
    Hello Everyone!!
    How shameful of me to get so far away from this site!! I used to come often and read everything I could. But then I just got extra busy. A lot has happened since my last blog in January. We are just now coming to an end to some of the therapy and we will have to wait for about five or six months to start another round. There is a cap on money through medicare and the therapists told me last week that the money is coming to an end for a while. So we stopped PT and Speech and Pool Therapy but will continue Occupational Therapy until the end of April. We have also started Acupuncture and it seems to be helping with movement of the left arm and hand. We struggled through a few months at the beginning of the year. Ray was back in the hospital for 6 hours but I wouldn't let them keep him since last time he was in the hospital they wrecked him. They didn't get him out of bed for a week and they gave him the wrong meds. So one Sunday his blood pressure just wouldn't go down so I took him to ER. We were there for 6 hours but his BP would not go down but I would not let them keep him. He was vomiting terribly and one doctor ordered an ultra sound and they found a mass. We saw a surgeon last week and he said it was most likely a stone and he did not want to put Raymond under and remove his gallbladder. He has improved over the past few weeks and is not as nauseous as he was for a while. His Stroke doctor put him on a probiotic and he is also eating much better, so that has helped with his being sick.
     
    We also found out the last bad fall affected his eyes and ears. HIs eyes are not working together and he had to see a specialist and now has two pair of glasses with prisms in them. He has to do eye excercises. It also affected his middle ear which made his balance terrible. I have been paranoid about him walking unassisted since November and finally in the past two days I am letting him move a little by himself. I am terrified, but with God's help I am trying to let go and let God help me!! I did have a lady come in a few times and it was wonderful just being able to get out by myself, but she got a regular job last week and I am on my own again. But it will work out somehow. It has been almost 9 months since Ray's stroke and I can't believe how the time has flown. I think no one is prepared for the length of time that it takes to get through one thing at a time.
     
    I have let go also of some of my frustrations. HIs TV watching used to drive me up the wall, but now I just let it be. I do encourage him to get up more and move around, but its still a struggle. I also let go of the constant taking naps. I know his body and brain need rest. I have a hard time just sitting still and I tease him about he does enough resting for both of us.
     
    As we all have learned and are learning...This is a long journey!! A journey none of us are prepared for. NO instructions! So now I take one day at a time and deal with it. My bad days are far and few between.
     
    I miss being here and will try to come more often. Now that our therapy is less I will have more time.
    Hugs, Judy
  4. Grannyjudymac72
    Hello my friends,
    Today is the first day of 2015. It is a quiet day around here and I have been doing a little of this and a little of that. I read a few blogs and there are so many things about strokes that we know nothing about. Its kind of scary. And with that in mind I have a couple of questions to ask and see if I get any answers. I mentioned in my last blog that Ray took a bad fall in November and since he got out of the hospital its like starting all over again. One of the new things since his fall is dizziness and so much more unbalance. He walked better when he got out of the hospital the first time in July. It seems as though he had more energy, and was more cognitive in the beginning. Ray has fallen 4 times since his stroke in June. All of them he hit his head in some way. But this last fall was worse, as he didn't remember the fall or even getting out of bed. Lately it seems as though his brain is worse. He is a wiz at math and yesterday he couldn't figure out numbers. He insisted that he was 21 years old when he got out of the Navy and since then we have been married for 62 years. I told him that would make him 83. He is 75. He thought and thought and could not figure it out. He has always been so good at math, in fact whenever I have had a math problem I go straight to him. Is this extra dizziness something that others have experienced? I took him to a Neurologist and he couldn't figure it out either and he said since Ray said he feels goofy and dizzy and gets sick to his stomach that maybe he has inner ear problems. Another question, is it common to have headaches? He always gets headaches. Is this a stroke related thing?
     
    I believe its called "The practice of medicine" because they are always practicing. There are so many unanswered questions. There is so much "unknown".
     
    I also came here to wish all of you a Happy New Year and lets all hope that this year brings us peace, joy and recovery!
    Love, Judy
  5. Grannyjudymac72
    Well boys and girls, its been quite a while since I have blogged! I believe the last time my frame of mind was not good. I had to go back and read what I had written last time. well since my last blog Ray took a bad fall. On Nov.17th I woke up at 3 AM to a loud "Thud". I looked over and Ray was not in bed. I couldn't figure it out because he wears a condom catheter at night, so I never worry about him getting out of bed. I found him face down in the bathroom and after working very hard I got him to his feet and got him back in bed. I called the Doctors office first thing in the morning as Ray could not remember what he had for supper the night before, he didn't remember getting out of bed, or falling or me putting him back to bed. He remembered Nothing! The doctors office said take him to the hospital now. Which I did and they said they were going to keep him in the hospital for observation and to run tests. Well after sitting in the hallway for six hours, they got a room for him. And he was in the hospital for a week! They had to keep him one extra day because they gave him the wrong meds the day before and they had to observe him extra. There was actually three med mistakes. So after a week of lying on his back (they only got him out of bed twice) he was very weak when I brought him home. They found no reason for his fall, but they think he got a concussion because he couldn't remember anything about falling before or after.
     
    Since he has been home he has gone backwards. He is more tired, and weak and I will not let him walk unassisted, because both times I did, he fell bad. His strength is awful and he is so unbalanced. I can do nothing about the care he received at the hospital but since he has been home, I have had a change in attitude and my goal now is to forget my thoughts and work hard to help him recover some of what he lost before this last fall. Ray has fallen 4 times hard since his stroke. This one was the worst. When a mans body falls face first it hits pretty hard. He had marks on his face which took a couple three weeks to heal. I am a softer woman now for some reason. I no longer want him to do what I want him to do. I accept what he can do for now and try to encourage at least some movement. He goes to therapy twice a week and I try to walk with him a little in the house on home days. I have come to realize what I am capable of doing to recover is not what he can do.
     
    Yesterday my son-in-law kept Ray for the day along with three of the young grandchildren. My daughter asked me to go Christmas shopping with her, so my son-in-law offered to take care of him. It was the first time I have left him since he got out of the hospital a month ago. It was very hard letting someone else take care of him. It was like leaving your child on his first day of school. I gave my son-in-law such instructions to never let him get up alone. He must have thought I was a little over protective, which I do have to admit I am very much so.
     
    So my friends this pretty much is my update on life here. I am happier now and not so frustrated. I do try and get more rest. Ray has also started to realize some of this limitations and doesn't ask to go to the shop as often. It's also pretty cold to go outside. So I send my warmest Christmas wishes to all of you. We will all start a new year soon and I hope each of us has a better time as we move through each day. Also I wanted to add, this week was Rays sixth month since his stroke.
     
    I again thank you for being here for me.
    Love, Judy
  6. Grannyjudymac72
    I wish I could just sit down and cry. Maybe a whole river of tears. To wash away the feelings that are roaming around in my head. Feelings of frustration, anger, tired, overwhelmed, etc. At first I was more patient with things. I took most every day in stride, for the most part anyway. I did have very tired days, but lately it seems my days are more full of frustration and anger. I don't want to feel this way!! One of my friends gave me a book of daily devotions and I have been reading it for 5 days. Today I am suppose to get rid of the negative feelings and give them to God. I have been trying to all day!! Some times it works, sometimes it doesn't.
     
    At this very moment I am simply tired. My therapy is work and keep busy while Ray rests and does his daily what ever he is going to do or "not" do. Today we had company and I had to take him out to the shop where he rebuilds cars and the man who was visiting removed the windshield of the truck Ray is restoring. Ray wanted to be out there working, but he cannot and we battle whenever he wants to go to the shop and work. He still can't walk unassisted and I so worry about him falling in the mess out in the shop. Its full of (equipment Ray calls it) I call it CRAP!! But of course I am wrong, it is his"stuff". Anyway going out there always tires me as I have to do all of this stuff he can't do. I become the "man". I don't like being the "man". But I also don't want to upset Ray for fear of another stroke.
     
    Anyway I am learning that in order for me to get rid of, or at least to try to get rid of the feelings is to come here and talk to you. You are my shoulder, my hankie, my leaning post, my place. Here I can shout, crab and just feel! I don't like the way I feel, but I do feel this way.
     
    It is almost 5PM, so hopefully in the next few hours it will be time to sleep and maybe tomorrow I won't feel this bad.
     
    Thanks for listening and thanks for being here for me to "vent"
    Hugss, Judy
  7. Grannyjudymac72
    Hello Friends,
     
    About 2 hours ago I wrote a long blog only to loose it because of my internet!! Talk about more frustration today. It's not a good day for me and I need to ask for advice and to vent at the same time.
     
    I haven't blogged in a long while, as my life is pretty busy and mostly because I just didn't need to for a while. But now I need to write!! I have a situation and I need help. I encourage Ray to do exercises throughout the week to strengthen his arm, shoulder and hand muscles. We have been using the e-stim on his shoulder and arm. It has helped with movement. My situation is I can't seem to get Ray to do exercises on his own. If I take him for a walk (which is not that often anymore) cause he is tired. I can get him on the bike on occasion (I fixed it so he could put his feet in the straps) I made a device to work his arms and hands and he will only do it if I stand over him and hold it for him. Today I asked him while he was lying down to try to move his arm which he did and I mentioned that he should try to do that often during a day while he is lying down. He said he would do it later after he rested. Bye the way lying down, watching TV is what he does most!!. He never lets go of the remote. When he does move to his chair, he puts it in his pocket so he won't forget it. That is nerve wracking all by itself. And when he did wake up, he didn't do anymore arm movements like I suggested.
     
    He has speech therapy, occupational therapy and physical therapy twice a week. They give him exercises to do at home and he just doesn't do them. He has never been motivated to do exercises. So I try and get him up and doing things, but he prefers to lie down or sit and watch TV. Today I am just at my wits end. I tried to get him to work with his arm, which he can now move a little. But he said I will do it after I rest. He slept for 3 hours. Then he is now in his chair and he asked me to put the e-stim on his arm so he won't have to exercise it. If the e-stim does its job Ray doesn't have to.
     
    I asked myself, should I just leave him be and let him deal with what ever it is that he doesn't want to do? I say no because he can not walk unassisted and whatever he needs or where ever he goes he needs me there to help him. I have tried to get him to get up and walk in the house a little. But nope, he sits or lies. I am his complete caregiver and I don't mind that at all. But I do mind that I can't motivate him to exercise. And also I am just tired. I have had help a few times, but he just sits and talks with the help and doesn't do anything else.
     
    What can I do? What should I do? I need someone to tell me how to deal with this frustration. As the ole saying goes, you can bring a horse to water, but you can't make him drink. And yet when he talks to people he tells them "I am greedy, I want everything back" Yet he doesn't do the work. I believe he just thinks it will someday just return.
     
    This is my second draft today, so I hope I don't loose it hahaha. I was just going to deal with loosing the first draft, but its been two hours now and I can't get over being frustrated. So here I am again. Writing to vent and to ask for help!!
    Thank you for being here.
    Judy
  8. Grannyjudymac72
    It's been a while since I have blogged, and not because I haven't wanted to, but mostly because I have been too tired. I think the past three months finally caught up with me this past couple of weeks. I am usually not tired more than maybe a day here or a day there, but this past week I have been exhausted more than usual. I believe it's a combination of being a caregiver and doing much more than I have been used to and also not eating the right foods. It's funny because I make sure Ray gets the most nutritious, fatigue fighting, energy building foods there are! And he is slowing regaining his appetite and a little more energy. He no longer spends half the day sleeping on the couch. Even he has mentioned that he feels better. That is a biggie!
     
    What's new is I finally realized that I was doing "everything" for Ray and not only tiring myself out, but not allowing him to grow in his strength and capabilities to learn how to do for himself. For the past two days I have allowed him to walk across the room to a different chair or to the couch. I have watched from a distance as he walked alone to the bathroom. I leave the room when he tries to dress himself, as its so hard not to help him. It has taken about three weeks, but he can put his shirt on pretty good and his pants are coming along. He got used to me doing most everything for him and after my right hand got to where even moving it was so painful, I realized I put all of my strength into him, and he needs to put his in. The therapists have shown him how to get up from a lying position using his elbow. He said I can't do it. So once my hand and back hurt so much I told him he had to try harder, because it hurt me to pull him up. So guess what?? He is getting up on his own now. It's a slow process but he can do it. So my new thing is letting go! That is soooooo hard for me. To let him relearn how to take care of himself. Even little things like getting ready for bed. I was putting his toothpaste on his toothbrush, pouring mouth wash into the cup. Putting his dentures into a cup and plopping in the denture cleaner. And now I sit on the edge of the bed while he does all of those himself. Gee, guess what, he does it weird, but he does it! So now I let him walk to the bed once he is finished and the one thing I do is put on the night catheter. He can't do that, but thats fairly easy. I tuck him in, said good night and go out to the living room to have "my quiet space" to watch the programs I record. I turn on the baby monitor and relax. It's the only me time I have.
     
    So not only stroke survivors have to rewire their brain, but caregivers do as well. I am learning the more I do for him, the less he will learn to redo himself! Gosh lightbulb moment
    So this is my contribution to the bloggers corner. My usually cheerful, I can do anything attitude is a little bit more on the "I am really tired here" and I think I am grumpy and need a break and some rest. I will find it somewhere. So hugs to all of you out there that are just here every day and who know how we feel and love us unconditionally. Guess what? I love you back!!!
    Hugs, Judy
  9. Grannyjudymac72
    Hello fellow StrokeNet family. Yes you are now part of my family. I can come to you for all of my thoughts, my goods and my bads!! Well today I come with a good for a change. Yesterday a few minutes after I took the e-stim off of Rays arm, I noticed what looked like a finger moving all by itself. I said "did you see that!!" I was amazed, delighted and shocked! I ran to get my cell phone to take a couple of video's so I could share with my family and with Rays OT. He also managed to move the upper part of his left arm. It's like a miracle is happening. I so hope so for Rays sake. And of course I can't deny for myself.
     
    Last week a friend of his who has been coming over for moral support had read an article put out by the National Stroke Association and he had a heart to heart talk with Ray about his having to be proactive in the rehabilitation of his body. What ever he said to Ray, that afternoon he was willing to take a longer walk and he was willing to sit up more in a chair. That alone was a miracle. As he had seemed less interested in much more than sleeping or lying on the couch. I had mentioned this in my previous blog. I also had a talk with Ray about his recovery. It seems to me that he feels that between the doctors, the medicine and the therapists, that all of his parts will start working. He has not connected the dots that those things can help, but that he has to do the work.
     
    So the movement in his hand is marvelous! So today I am blogging some good news. He is presently complaining about how tired he is today, and that is okay. I told him how about you lie down for a while and then maybe we can take a walk.
     
    Also some good news in the fact that some of the outside jobs that I am not capable of, one of our camping club friends came over and got our motor home started and took it over to have the emissions test. It passed!! I don't drive the motor home, so getting it on the road again was marvelous. The batteries were dead and the jacks did not retract. So another thing checked off of my "how can I manage that" list.
     
    So family, I am smiling today, a tired smile, but none the less a smile. :lolu:
     
    Love, Judy
  10. Grannyjudymac72
    Interesting feeling today. Not sure if it's just tiredness or numbness. But today is a new day and I plan on trying to be ready for it. This has been a busy week for us and each day has been filled with appointments, therapy, visitors and motivational talks with Ray. I asked him an interesting question about three days ago and got an interesting answer. As he was lying on the couch I asked him. Do you have it in your mind that one day you will just wake up and your arm and hand will just work again? He said well that's what I was thinking yes! I tried to talk to him about it most likely is not going to happen that way. That what we are working on is keeping the arm and hand active with our e-stim and just movement of his arm. And that hopefully if there is some movement in the arm and hand that we will pursue more exercise just like we have been doing with the leg. And at therapy this week, the OT said she did get some movement out of his arm, even though very slight. Which was very encouraging for me. Ray didn't seem to feel the movement. But it was definitely there. He had one really good PT last week, and one where he threw up after a new exercise. It puzzled all of us.
    This week was filled with a visitor almost every day, which I have been promoting more visits just to keep Ray from lying down watching TV. I have told him that sitting up, talking to people, being alert is a form of therapy. And I did notice he was more alert during these visits. Even though he was tired when they left. And I let him rest a lot.
     
    My moods have been different as well this past week. Even though I am a totally positive, upper person, I was near tears a couple of days. I never cry and that is a story all in its own, but if someone had said the wrong thing to me, I might have just broke down. I did manage to get away one day and have lunch with one of my sewing buddies and best friend and it was wonderful just sitting and talking about my feelings and what has been going on. A good friend is a sounding board and it was so pleasant to just be out. Then I did my grocery shopping and tried to purchase some new foods. I have been reading about super foods and also foods that help with fatigue.
     
    We had a little rain today which was so nice, as its been hot and dry for months now. Outside just drank it in, although its gone now. I am looking forward to fall and all of the new colors.
     
    Weird, I just started crying and gosh it feels strange. Its a feeling of being alone. I think of winter coming and all of the things I will have to tackle on my own. Ray is the outside winter fixer. The driver if it snows. Guess I will have to put my big girl panties on and figure it out one day at a time. I am sort of laughing inside, my feelings seem to be all over the place right now. I have been wanting to blog for a few days and sitting down writing what ever comes out of my head seems therapeutic! I consider myself a strong lady and I do well under pressure most of the time. But I guess I am allowed to be a "sissy girl" every now and then.
     
    Thank goodness for this site and all of you for me to dump on. I get to dump the good, bad and the ugly. And as so many of you know there are lots of those days when one or all of those feelings pass through us. Well now that I got that out, I guess it's time to move on to the real day and just "do it"! I will do some laundry, help Ray get from here to there and maybe even pull out one of the afghans I found that need to be finished. Am I a coo coo bird? Just reading through this blog makes me think so.
     
    Thank you for letting me vent!
    Love, Judy
  11. Grannyjudymac72
    Two months ago it started! This incredible journey that no one fully understands until the path crosses them. It was 6 am June 20th, I was asleep and Ray called out for me. I went into the living room and he asked me help him to the couch that he could not do it himself. He was slightly slumped in our overstuffed chair. I said something is wrong, he said "no" just help me to the couch I will be okay. The couch is his "safe" place as he has back problems and lying down on the couch is something he does a lot. I repeated something is wrong, he repeated help me to the couch. I said I am calling 911, he said no, put me on the couch. I immediately called 911 and within an hour I am sitting in the ER waiting for the results. Because Ray is on coumadin they could not give him any clot busters. That was the beginning of this journey.
     
    He was in the stoke unit a week, then inpatient rehab for three weeks. At first I thought they were hard days, but I found out they were the easy days. As I could leave the hospital, come home, eat, rest and sleep. It was a flurry of fixing the house to have it safe for him, but I could still sleep at night. Those days went by fast. And my oldest daughter helped me through those beginning days by being at the hospital everyday when I couldn't, to see that he was being taken care of.
     
    The first few days at home were scary to say the least. I had this 200 pound fragile human being to take total care of. In the beginning we had a friend from out of town stay with us for three weeks, and he helped physically a great deal, plus he told me to lie down and rest while he took care of Ray for a few hours. Those were precious hours! Before our friend left, Ray took a bad fall and things changed. Once our friend went home, I was alone with this stubborn, fragile, often angry man. And since then days have been good, bad, even worse than bad, and indifferent. But I have managed to live through them and deal with feelings I hadn't felt in a long time. In 1981 Ray was burned bad and I had to take care of him for 8 months, but in those days at least Ray could walk unassisted. I remember the feelings I had then, were returning. The frustration, the anger, the sadness, the helpless and all of those feelings I had way back then. But I was 40 yrs old, and I had not put my big girl panties on at the time. Since then I went through shrinky dink therapy, saw a phycologist for two years and did put my big girl panties on.
     
    I handle the feelings better these days, but the inner turmoil is the same. I am a very positive person, who believes in working hard, doing therapy "have had both hips and both knees replaced" and to keep on going. But Ray is different in many ways than me. He is more negative and hates therapy! He wants to rest, sleep and watch TV. And then I found StrokeNet and have read many of the pages on this site. I have been given such good advice. This is his recovery, not mine, even though I am a great part of it. I have been told he needs the sleep and rest he wants so much of and the TV remote control is his favorite friend.
     
    I am learning, I am learning!! Each day is a different day. Some good, some not so good. Today is an in-between day. He had a visitor and while someone is here Ray has to stay off the couch and be alert and active in thought. And those times are good for him. But now he resting on the couch and I am in my "safe place" which is my office. I am an avid seamstress and I love to sew, and this room is my sewing/craft/computer/office! It's where I can be alone in my thoughts and deeds. I have put my sewing away for a while, but hopefully someday I can pull it back out and create!
     
    So today is my first blog. My first actual writing of my thoughts. This is going to be a long journey and having StrokeNet here to walk along with me is going to be a saving grace. Thank you for being here!!