Things can change so much in a day. J.J. is in significant pain today and has spent the day hopped up on Vicodin and dosing in an armchair downstairs with an ice pack on his knee. Here in a minute I will go down and rouse him enough to feed him some more Vicodin. When it has kicked in, I'll get him up for a shower. He's supposed to have his neuropsychologist appointment tomorrow, but honestly, I think it may be a waste of time for him to go. Because he's in so much pain and because of the Vicodin, he's barely able to communicate today. It's very discouraging.
And that leads me to the topic of tonight, stress. I was just thinking as I was hanging up some laundry that if I could, I would go back in time and tell the Erin I used to be to stop being so wound up all the time. I used to think I had a stressful life. I didn't. Stress is asking your husband ten times a day to smile for you so you can make sure his face isn't drooping (one of the signs of stroke). Stress is not being sure when (and even if) he'll return to work. Stress is having your heart beat out of your chest every time you call home and he doesn't answer. Stress is listening to your four year old daughter doctor her baby doll because Dolly had a stroke. Stress is abandoning all of your hobbies in favor of studying new therapy techniques and attending support groups. Stress is fitting all of this into a schedule along with your job that requires well over 40 hours a week of your time. That is stress.
My life is so hard right now, and I know I have no room to complain, because I should be thanking God that I have the opportunity for it to be so complicated. And I do, believe me. It's just very, very wearing to never have down time.
And now I must go wait on the invalid again...
Wednesday, May 27, 2009
Tuesday, May 26, 2009
Vacation Pics
We went to St. Louis over the weekend with our friends Mike and Nova and their two boys, Gabe and Connor (aka my future son-in-law; he and Leah have been quite adamant about this since they met when they were two). Here's a few pictures from our trip:
Surgery
We're home and I've napped, so I may actually make it through the rest of the day. In case anyone was wondering, getting home from vacation then having to get up at 4:00 the next day is no picnic and should be discouraged.
Okay, so J.J. did have a lateral tear of his meniscus that was repaired. What wasn't anticipated is that his gout has spread into his knee and had left a number of deposits behind, so as many as possible were shaved off the bone. This is likely to keep recurring unless J.J. gets on a preventative for his gout, which is counterindicated with the medication he's on for his heart. So I guess he's stuck with the sore knee for now, since heart trumps knee.
They kept him in recovery forever and we didn't get to leave until about 11:30. J.J.'s walking fairly well and has next to no pain. His biggest problem is that the knee is swollen and is hard to bend, so it's difficult for him to get up and down from a chair. Beyond that he's doing really well.
He's lost seven pounds in fluid since Friday, due to the increased furosemide. Now, he'd regained eight pounds so he's almost back where he started. He has a cardiologist appointment with the most highly recommended cardiologist I could find next Tuesday, so hopefully we'll be able to figure out what's going on then.
I'm getting ready to leave to go retrieve the kids and get them back to the house before I leave to go to a work meeting this evening, but never fear; Karen, our wonderful and long-suffering babysitter, will be coming over at 4:45 to keep an eye on everyone while I'm gone.
Okay, so J.J. did have a lateral tear of his meniscus that was repaired. What wasn't anticipated is that his gout has spread into his knee and had left a number of deposits behind, so as many as possible were shaved off the bone. This is likely to keep recurring unless J.J. gets on a preventative for his gout, which is counterindicated with the medication he's on for his heart. So I guess he's stuck with the sore knee for now, since heart trumps knee.
They kept him in recovery forever and we didn't get to leave until about 11:30. J.J.'s walking fairly well and has next to no pain. His biggest problem is that the knee is swollen and is hard to bend, so it's difficult for him to get up and down from a chair. Beyond that he's doing really well.
He's lost seven pounds in fluid since Friday, due to the increased furosemide. Now, he'd regained eight pounds so he's almost back where he started. He has a cardiologist appointment with the most highly recommended cardiologist I could find next Tuesday, so hopefully we'll be able to figure out what's going on then.
I'm getting ready to leave to go retrieve the kids and get them back to the house before I leave to go to a work meeting this evening, but never fear; Karen, our wonderful and long-suffering babysitter, will be coming over at 4:45 to keep an eye on everyone while I'm gone.
Knee Surgery
Is this morning. We have to be there at 6:00 and surgery is scheduled to start at 8:00. I'll update as soon as I know anything, but if you'd be praying in the meantime, I'd really appreciate it.
Friday, May 22, 2009
Chronic Fatigue
In less than nine hours, I am supposed to have four people and all of our stuff loaded into a vehicle to depart for a weekend vacation. And there are very, very few things I would rather do right now that load my family/our bags up for a trip. I've been working 55 hours a week for the last few weeks, and considering that I'm still going to a lot of doctor appointments with J.J., that's a lot. My nights are completely filled with kid activities; we almost never just have an evening at home. My house is a pit. I'm not getting my studying done for the Chartered Retirement Planning Counselor certification I'm supposed to test for soon (and honestly, I couldn't care less about having this certification, but INHP has paid for me to take the course, so I have to do it now). I'm actually vaguely resentful that I should be starting coursework for my Ph.D. (I got a phone call notifying me of my acceptance the day after J.J.'s stroke) on June 1, and instead I won't be doing it until God knows when. I'm too busy keeping lists of meds, researching side effects, racing from one appointment to the next, writing out lists of questions to be answered by the doctor during appointments I can't attend, trying desperately not to scream when after a ten hour day at work, my children want to climb all over me, etc. I haven't had a non-stroke related day off work since December. A proud tradition that will carry on this week, as I have three days off but two and a half of them are filled with strokey appointments.
Will you look at that? I've shown my hand. This isn't easy, it isn't fun, and it just keeps going. And obviously I'm not as stoic and perfect as y'all thought.
Now, I've got to go get ready for my "vacation". Yippee.
Will you look at that? I've shown my hand. This isn't easy, it isn't fun, and it just keeps going. And obviously I'm not as stoic and perfect as y'all thought.
Now, I've got to go get ready for my "vacation". Yippee.
Stuff
1. J.J.'s surgery has been moved to 8:00 on Tuesday morning, which means we have to be there at 6:00 a.m. Which would be bad enough, but our day care doesn't open until 6:00, which means I have to figure out once again how to pierce the time-space continuum to make this work.
2. J.J. is retaining fluid in his legs again, which most likely means his ejection fraction is diminished again. His furosemide (Lasix, a water pill) was increased up to 60 mg long enough for him to get into his cardiologist. And there's an interesting story there, since...
3. We fired his cardiologist this week. I need someone who is going to be a team player with us, not someone who just barely deigns to speak to us. I have a couple of recommendations from the stroke case manager at RHI and our family doctor's office is going to call to do the referral. We're having to go outside the Hendricks Regional Health system, which kind of stinks, but whatever gets us a doctor who acts like s/he gives one tenth of one crap about J.J.
4. We met with the stroke case manager at RHI on Monday for a follow up. She is very encouraged with J.J.'s progress and expects him to eventally recover about 98% of his speech and most of his memory. We just have to hurry up and wait some more. She discharged him, so that's one less medical professional on the rotation. But...
5. J.J. has a appointment next Friday with an ENT about his possibly paralyzed vocal chord. Hopefully we'll have some news soon on this front. J.J. gets frustrated because he can't sing at all, even when he knows the words.
6. Next Thursday J.J. will have an all day assessment with a neuropsychologist (this is part of the requirements for his participation in voc. rehab). The assessment should uncover all of J.J.'s cognitive deficits so we can figure out how best to accomodate them. Most of his issues appear to be in following multi-step directions when they don't follow a logical process (so asking him to go downstairs and get four or five things and then come back is usually okay, but asking him to touch the doorknob, stick out his tongue and pull on his ear like they do at speech therapy usually he has only about a 70% success rate on), short term memory functions (we're making lots of lists!) and the facial recognition/song recognition issues I referred to a couple of posts back. He also has more trouble speaking when other conversations are taking place around him since it's harder for him to concentrate on what he's trying to say. But I'm sure these are all things we can work around.
I think you're basically up to date now...
2. J.J. is retaining fluid in his legs again, which most likely means his ejection fraction is diminished again. His furosemide (Lasix, a water pill) was increased up to 60 mg long enough for him to get into his cardiologist. And there's an interesting story there, since...
3. We fired his cardiologist this week. I need someone who is going to be a team player with us, not someone who just barely deigns to speak to us. I have a couple of recommendations from the stroke case manager at RHI and our family doctor's office is going to call to do the referral. We're having to go outside the Hendricks Regional Health system, which kind of stinks, but whatever gets us a doctor who acts like s/he gives one tenth of one crap about J.J.
4. We met with the stroke case manager at RHI on Monday for a follow up. She is very encouraged with J.J.'s progress and expects him to eventally recover about 98% of his speech and most of his memory. We just have to hurry up and wait some more. She discharged him, so that's one less medical professional on the rotation. But...
5. J.J. has a appointment next Friday with an ENT about his possibly paralyzed vocal chord. Hopefully we'll have some news soon on this front. J.J. gets frustrated because he can't sing at all, even when he knows the words.
6. Next Thursday J.J. will have an all day assessment with a neuropsychologist (this is part of the requirements for his participation in voc. rehab). The assessment should uncover all of J.J.'s cognitive deficits so we can figure out how best to accomodate them. Most of his issues appear to be in following multi-step directions when they don't follow a logical process (so asking him to go downstairs and get four or five things and then come back is usually okay, but asking him to touch the doorknob, stick out his tongue and pull on his ear like they do at speech therapy usually he has only about a 70% success rate on), short term memory functions (we're making lots of lists!) and the facial recognition/song recognition issues I referred to a couple of posts back. He also has more trouble speaking when other conversations are taking place around him since it's harder for him to concentrate on what he's trying to say. But I'm sure these are all things we can work around.
I think you're basically up to date now...
Sunday, May 17, 2009
Battle of Indianapolis
Eli took third place in sparring, weapons and forms. He's disappointed but this isn't bad considering that he's missed several classes recently due to the stroke madness.
Finding balance
Since the stroke, I have several distinct lives that I'm struggling to integrate. There's Erin the mother, Erin the wife, Erin the friend, Erin the worker, Erin the stroke wife (which encompasses the role of Erin the advocate), Erin the author and Erin the nonprofit founder. Not to mention Erin the photography business owner, which has totally been pushed to the background. Aside from a few shots of the kids, I haven't taken any photos at all since J.J.'s stroke.
All of the above means that Erin is exhausted and has absolutely no free time. Zilch. Zero. Nada. But what do I do? There isn't any give room. And often there are conflicts between the different aspects of my life, like right now when I should be at Eli's tae kwon do championship and instead have spent the last 30 minutes drafting an email to convince a language researcher in Virginia to accept J.J. into her clinical study, which would give J.J. more speech therapy.
In other news, J.J.'s latest round of blood work came back with everything important looking perfect. Glucose, thyroid function, iron all awesome. Only things that were outside of ranges were just a smidge low and can either be explained by his medication (calcium) or don't really indicate a problem (creatinine and liver enzymes).
We have discovered that J.J.'s recall of the last two or three years has some holes. The biggest gaps we've found are new songs (he doesn't remember having heard them before) and facial recognition of people he's met recently. If given a name, he knows who the person is and what relationship he has with them, but he can't remember what they look like. The exception to this rule appears to be if the person has a unique feature. For instance, J.J. says he can remember his coworker Kevin because of his red hair. But for the rest of you, if J.J. looks bewildered, please introduce yourself. Once he hears your name he'll know who you are.
J.J.'s making noise about not having his surgery. He's afraid to go off his blood thinners for the few days necessary, since he's afraid he'll have another stroke. I've reminded him that it practically required an act of Congress to set up this surgery and everyone from his neurologist and cardiologist to his family doctor, etc. have all agreed the benefits outweigh the risks, but he's still reticent. He's scheduled to go in for his weekly blood pressure check at our family doctor's office tomorrow, so I've asked him to bring up the subject so he can get a little extra reassurance. Ultimately I can't make him have the surgery, but with him only being 33 he's probably going to need that knee in the future. So we'll see what happens.
Alright, enough. I must get out the door to see my boy compete. He's determined to take first place in sparring today. Keep your fingers crossed!
All of the above means that Erin is exhausted and has absolutely no free time. Zilch. Zero. Nada. But what do I do? There isn't any give room. And often there are conflicts between the different aspects of my life, like right now when I should be at Eli's tae kwon do championship and instead have spent the last 30 minutes drafting an email to convince a language researcher in Virginia to accept J.J. into her clinical study, which would give J.J. more speech therapy.
In other news, J.J.'s latest round of blood work came back with everything important looking perfect. Glucose, thyroid function, iron all awesome. Only things that were outside of ranges were just a smidge low and can either be explained by his medication (calcium) or don't really indicate a problem (creatinine and liver enzymes).
We have discovered that J.J.'s recall of the last two or three years has some holes. The biggest gaps we've found are new songs (he doesn't remember having heard them before) and facial recognition of people he's met recently. If given a name, he knows who the person is and what relationship he has with them, but he can't remember what they look like. The exception to this rule appears to be if the person has a unique feature. For instance, J.J. says he can remember his coworker Kevin because of his red hair. But for the rest of you, if J.J. looks bewildered, please introduce yourself. Once he hears your name he'll know who you are.
J.J.'s making noise about not having his surgery. He's afraid to go off his blood thinners for the few days necessary, since he's afraid he'll have another stroke. I've reminded him that it practically required an act of Congress to set up this surgery and everyone from his neurologist and cardiologist to his family doctor, etc. have all agreed the benefits outweigh the risks, but he's still reticent. He's scheduled to go in for his weekly blood pressure check at our family doctor's office tomorrow, so I've asked him to bring up the subject so he can get a little extra reassurance. Ultimately I can't make him have the surgery, but with him only being 33 he's probably going to need that knee in the future. So we'll see what happens.
Alright, enough. I must get out the door to see my boy compete. He's determined to take first place in sparring today. Keep your fingers crossed!
Tuesday, May 12, 2009
Surgery scheduled
After much hoopla, J.J.'s knee surgery has finally been scheduled for 11:00 a.m. on Tuesday, May 26. Thank goodness it's not before, since we're going to St. Louis for Memorial Day and will be doing lots of walking.
In other news, J.J. lost 3.5 pounds last week. That brings his total to some really unreasonably high number. I'm not at home so I can't tell you with complete accuracy, but I think he broke the 100 lbs. mark. If not, he's within a hair of it. And it's been less than three months since the stroke.
In other news, J.J. lost 3.5 pounds last week. That brings his total to some really unreasonably high number. I'm not at home so I can't tell you with complete accuracy, but I think he broke the 100 lbs. mark. If not, he's within a hair of it. And it's been less than three months since the stroke.
Monday, May 11, 2009
Reason #15,823,902 why I'm proud of J.J.
Last night as we were lying in bed getting ready to go to sleep, we realized that J.J.'s last speech therapy session was scheduled for today. This is not because he's so much better he doesn't need more therapy, it's just because our insurance will only pay for a certain number of sessions. The way to get around this, from what I've heard, is to join a clinical study of some nature; many will provide extra therapy. Anyway, I've been looking into one in Cincinnati that will require J.J. to go over once a week or so for an MRI but which will set him up with extra speech therapy sessions here locally. J.J. said that he's really willing to do as much as he can to see if anyone can learn anything from his stroke and his recovery.
And then he said, "I know this happened for a reason, and I think it was so other people know that aphasia doesn't mean your life is over. If you try as hard as you can, you will improve. I'm supposed to tell as many people as I can about that."
That's my J.J. No self-pity, no depression, just making the best out of the situation that he can.
Oh, and we got the lab test results back today. No problems with his thyroid, glucose perfect, everything else within normal ranges except low calcium (a common side effect of one of the medications he's taking, furosemide) and low creatinin (nothing to worry about, from what I can gather). So apparently he needs to see a dermatologist to figure out what's up with this hair thing. My sink is clogged and my vacuum needs to be cleaned out nightly, due to his hair falling out in huge clumps. Something's got to give.
No word on the clearances from cardiology/neurology for the knee surgery. It's on my list for tomorrow to try to figure out what's going on with that.
And then he said, "I know this happened for a reason, and I think it was so other people know that aphasia doesn't mean your life is over. If you try as hard as you can, you will improve. I'm supposed to tell as many people as I can about that."
That's my J.J. No self-pity, no depression, just making the best out of the situation that he can.
Oh, and we got the lab test results back today. No problems with his thyroid, glucose perfect, everything else within normal ranges except low calcium (a common side effect of one of the medications he's taking, furosemide) and low creatinin (nothing to worry about, from what I can gather). So apparently he needs to see a dermatologist to figure out what's up with this hair thing. My sink is clogged and my vacuum needs to be cleaned out nightly, due to his hair falling out in huge clumps. Something's got to give.
No word on the clearances from cardiology/neurology for the knee surgery. It's on my list for tomorrow to try to figure out what's going on with that.
Thursday, May 7, 2009
Warfarin
I'm working from home today, which works really well for me. I'm super-productive when I'm at home during the day. I finish a work related task, then get up and walk around to stretch, usually completing a housekeeping chore on the way through.
This morning I was cleaning off the bar in the kitchen and came across the bottle of warfarin that was prescribed for J.J. when he left rehab. This is the drug that caused J.J. to have significant memory and concentration problems--the drug we convinced Dr. Acula in early March to change. J.J. was in the next room, so I asked him why it was still up there. He replied, "It's there to remind me how far I've come."
Normally, something sitting around on my counter with no apparent purpose would drive me crazy. But I guess I'll learn to live with that bottle on display; I'm definitely not going to be the one to move it!
This morning I was cleaning off the bar in the kitchen and came across the bottle of warfarin that was prescribed for J.J. when he left rehab. This is the drug that caused J.J. to have significant memory and concentration problems--the drug we convinced Dr. Acula in early March to change. J.J. was in the next room, so I asked him why it was still up there. He replied, "It's there to remind me how far I've come."
Normally, something sitting around on my counter with no apparent purpose would drive me crazy. But I guess I'll learn to live with that bottle on display; I'm definitely not going to be the one to move it!
Wednesday, May 6, 2009
Emailed response
Don't know what I'm referring to? Read my first update from Friday, then this morning's update...
My email this morning:
Dr. Johnson,
I was an attendee at the FPA meeting in Indianapolis last week where you spoke. I have been struggling with whether or not to write you since that meeting, but I do believe that I need to address one topic you touched on.
In your talk, you discussed how men’s speech centers are in one area of the brain (Broca-Wernicke’s area) and how if a man has a stroke in this area, he’ll never talk again, but that’s okay because if he has a recliner, a remote and some chips he’s good for a decade.
My 33 year old husband had a left MCA ischemic stroke on February 15. After arriving at the ER paralyzed on the right side of his body and unable to speak, he has made a pretty remarkable recovery. He still battles some aphasia (he is classified as mild dysphasic) but physically has completely recovered. He does indeed have a lesion where cell death occurred in Broca’s area.
Which brings me to the point of this email. First of all, your statement that a man having a stroke in this area of the brain will not speak is false. My husband is living proof. Additionally, May is National Stroke Awareness Month, and it might behoove you to consider removing a reference that may offend any of the millions of people whose lives have been touched by stroke from your talk. As the third leading cause of death and the leading cause of disability in the United States, I can’t be alone in being offended. And as a sales coach, I’m pretty sure you know what offending your client does to your ability to close a sale. At this point, I could not be less interested in purchasing anything you are selling, regardless of my need for it.
Thank you for your time and consideration.
Sincerely,
Erin Robertson
The response I received:
Hi Ms. Robertson,
I am really sorry to hear about your husband.
the point of my comment was the psycho-biological and mental superiority of women and how men need to be less parochial about how they sell. I am also sorry that my attempt at humor struck a nerve with you and I apologize.
Kerry Johnson
Remember that this man is a psychologist and a sales coach. And a jerkface, by the way.
You know, I just hope this man remembers my email EVERY TIME he makes that comment in the future. I sent him the link to this blog (it's in my email signature); I hope he visited and saw pictures of my children and our family and that they flash before his eyes with every talk he gives.
But now, I'm letting it go. I did the best I could do, and life is far too short to harbor ill will toward someone I'll most likely never encounter again...
My email this morning:
Dr. Johnson,
I was an attendee at the FPA meeting in Indianapolis last week where you spoke. I have been struggling with whether or not to write you since that meeting, but I do believe that I need to address one topic you touched on.
In your talk, you discussed how men’s speech centers are in one area of the brain (Broca-Wernicke’s area) and how if a man has a stroke in this area, he’ll never talk again, but that’s okay because if he has a recliner, a remote and some chips he’s good for a decade.
My 33 year old husband had a left MCA ischemic stroke on February 15. After arriving at the ER paralyzed on the right side of his body and unable to speak, he has made a pretty remarkable recovery. He still battles some aphasia (he is classified as mild dysphasic) but physically has completely recovered. He does indeed have a lesion where cell death occurred in Broca’s area.
Which brings me to the point of this email. First of all, your statement that a man having a stroke in this area of the brain will not speak is false. My husband is living proof. Additionally, May is National Stroke Awareness Month, and it might behoove you to consider removing a reference that may offend any of the millions of people whose lives have been touched by stroke from your talk. As the third leading cause of death and the leading cause of disability in the United States, I can’t be alone in being offended. And as a sales coach, I’m pretty sure you know what offending your client does to your ability to close a sale. At this point, I could not be less interested in purchasing anything you are selling, regardless of my need for it.
Thank you for your time and consideration.
Sincerely,
Erin Robertson
The response I received:
Hi Ms. Robertson,
I am really sorry to hear about your husband.
the point of my comment was the psycho-biological and mental superiority of women and how men need to be less parochial about how they sell. I am also sorry that my attempt at humor struck a nerve with you and I apologize.
Kerry Johnson
Remember that this man is a psychologist and a sales coach. And a jerkface, by the way.
You know, I just hope this man remembers my email EVERY TIME he makes that comment in the future. I sent him the link to this blog (it's in my email signature); I hope he visited and saw pictures of my children and our family and that they flash before his eyes with every talk he gives.
But now, I'm letting it go. I did the best I could do, and life is far too short to harbor ill will toward someone I'll most likely never encounter again...
Wednesday update
We went to our family doctor yesterday, and she said we have to obtain clearance from J.J.'s cardiologist and neurologist to have the surgery. She has apparently forwarded the information to their offices. Good luck with getting anything from Dr. Acula, though--I have a feeling I may have to call his nurse again to see if she can help. Why did I expect this to be easy? History has proven that NOTHING has been easy since the stroke. Every day is like a string of minor miracles.
Anyway, leaving that subject for a moment...
Our doctor ordered more blood tests to check on why J.J.'s hair is falling out in clumps. His thyroid is still the leading candidate, but now we've added diabetes and anemia to the mix. Apparently insulin resistance and certain types of anemia are common reactions to stroke. So anyway, hopefully we'll get some news on this today.
On Monday, we attended another meeting of the aphasia support group. J.J. is the youngest person in the group, the closest to his stroke (most of the others are at least a year out) and by far the highest functioning. It kind of makes me feel guilty to complain about some of the issues we have when there are so many people in this group who would love to be in our shoes. It's difficult to know that J.J. will continue to improve and to look at some of the other survivors and know that this is about as good as it gets for them. J.J. did enjoy the group a little better, and I continue to get good information, so I think we'll be going back.
Today J.J. has his last session of speech therapy (only because we've now maxed out what our insurance will pay for--he could still use more) and he's also going to check out a different support group. Then he's got the kids by himself tonight--I have to work until 9:00 or so.
Now you're completely up to date!
Anyway, leaving that subject for a moment...
Our doctor ordered more blood tests to check on why J.J.'s hair is falling out in clumps. His thyroid is still the leading candidate, but now we've added diabetes and anemia to the mix. Apparently insulin resistance and certain types of anemia are common reactions to stroke. So anyway, hopefully we'll get some news on this today.
On Monday, we attended another meeting of the aphasia support group. J.J. is the youngest person in the group, the closest to his stroke (most of the others are at least a year out) and by far the highest functioning. It kind of makes me feel guilty to complain about some of the issues we have when there are so many people in this group who would love to be in our shoes. It's difficult to know that J.J. will continue to improve and to look at some of the other survivors and know that this is about as good as it gets for them. J.J. did enjoy the group a little better, and I continue to get good information, so I think we'll be going back.
Today J.J. has his last session of speech therapy (only because we've now maxed out what our insurance will pay for--he could still use more) and he's also going to check out a different support group. Then he's got the kids by himself tonight--I have to work until 9:00 or so.
Now you're completely up to date!
Not sure if I feel better or not...
I just sent an email to the presenter I referred to in one of Friday's entries explaning why his comment was offensive to me and encouraging him to remove it from his future talks. I'm not sure that it made me feel better. I'm now reliving the anger I felt in that moment. But it's worth it if I can increase awareness in the general population, right?
I owe you a post about yesterday. Let me get to work and then I'll fill you in...
I owe you a post about yesterday. Let me get to work and then I'll fill you in...
Monday, May 4, 2009
Since we haven't been in the hospital for a while...
it's obviously time to go back. The orthopedist confirmed this morning that J.J. has torn the outer meniscus in his right knee and has recommended a surgical repair to take place as soon as possible, probably within the next week to 10 days. This is complicated by the fact that J.J. is on a couple of different blood thinners to lower his risk of having another stroke; obviously, in a surgical scenario they want him not to be on these. So he's been referred back to our family doctor to figure out what to do with the medication and to schedule the surgery; he has an appointment with her tomorrow. He should only be out of commission for a few days and should be able to have the surgery on an outpatient basis. They'll send him home in a hinged knee brace and he shouldn't even need to use crutches. The good news is that he's still off work, so we don't need to worry about him having extra time off because of this.
And the really good news? J.J. went to the orthopedist by himself today and was able to relate all of the preceding information to me in about a two minute phone conversation.
And the really good news? J.J. went to the orthopedist by himself today and was able to relate all of the preceding information to me in about a two minute phone conversation.
Sunday, May 3, 2009
February 18, 2009
I just pulled out my point-and-shoot camera to check for something else and found that I did take a couple of pictures of J.J. while he was in the hospital. I hope I never, ever see him like this again. Just looking at these pictures makes me want to throw up.
Stroke Awareness Month Shirts
I just made these for me and the kids, printed on black t-shirts. My Photoshop skillz are not the best, but they're adequate for this purpose!
Proud
I love my husband. Not to sound all Hallmark card-ish, but I knew from the instant I met him that he was going to be important in my life. I didn't know how important, or that I would end up sharing my life with him and choosing him as the father of my children, but I knew he was special. I've loved him forever, and I will love him forever.
I will admit, though, that there were times that I've not been proud of him. Whether it was showing up with mustard dripped on his shirt to one of my work functions, or blowing his nose at a restaurant table, or any of the hundreds of other things he's done in the course of our years together that have slighted my conventional sensibilities, the man has made me cringe (mostly mentally, but sometimes physically as well) time and time again.
I won't guarantee that I'll never gripe at him again for engaging in some behavior along the lines of those mentioned above, but I will tell you that I've found countless reasons to be proud of him everyday since February 15. I've never witnessed the level of courage and determination that is required for J.J. to complete the simplest tasks. From placing an order at a restaurant to calling to RSVP our daughter for a classmate's birthday party to picking up Eli's 4-H geraniums, all social interactions are difficult for J.J. But he somehow manages to make it happen, often without making the apologies and explaining that he has had a stroke that I would automatically tack on to everything I said. J.J. is not ashamed of who he is or what has happened to him.
As I write this, J.J. is on his way to a birthday party with both of our children, opting to leave me at home since I seem to have strained a muscle in my back while doing yard work yesterday. The birthday boy is one of Leah's classmates, and we don't know his parents well (although he did attend Leah's last birthday party). I started to worry about J.J. taking on this challenge, but soon I realized--he'll make it work. I can have confidence in that.
Before I sign off, a couple more reasons I'm proud of J.J.:
1. We went to BW3's for dinner on Friday night. This is one of the first sit-down meals we've had out since J.J.'s stroke and our first visit to a restaurant that offered the NTN Trivia for quite some time. Although J.J. has discovered that it's difficult for him to focus on the trivia questions and use the Playmaker to record his answers at the same time, when he pushed the box over to me to control and had me enter his answers, he did very, very well. J.J. is still preternatuarally smart.
2. He bowled five games on Friday afternoon while he was waiting for me to leave work, including a game that included four strikes in a row and an additional five spares! I'm in awe, since if I break 100 I'm on fire!
In addition, his speech has really taken a turn for the better in the last day or so. This weekend is really the first time since the stroke that I've been able to forget for a while while interacting with him that there was every anything wrong.
Dare I say that life is approaching normal? Okay, it's not exactly as it was before, but it feels really good.
I will admit, though, that there were times that I've not been proud of him. Whether it was showing up with mustard dripped on his shirt to one of my work functions, or blowing his nose at a restaurant table, or any of the hundreds of other things he's done in the course of our years together that have slighted my conventional sensibilities, the man has made me cringe (mostly mentally, but sometimes physically as well) time and time again.
I won't guarantee that I'll never gripe at him again for engaging in some behavior along the lines of those mentioned above, but I will tell you that I've found countless reasons to be proud of him everyday since February 15. I've never witnessed the level of courage and determination that is required for J.J. to complete the simplest tasks. From placing an order at a restaurant to calling to RSVP our daughter for a classmate's birthday party to picking up Eli's 4-H geraniums, all social interactions are difficult for J.J. But he somehow manages to make it happen, often without making the apologies and explaining that he has had a stroke that I would automatically tack on to everything I said. J.J. is not ashamed of who he is or what has happened to him.
As I write this, J.J. is on his way to a birthday party with both of our children, opting to leave me at home since I seem to have strained a muscle in my back while doing yard work yesterday. The birthday boy is one of Leah's classmates, and we don't know his parents well (although he did attend Leah's last birthday party). I started to worry about J.J. taking on this challenge, but soon I realized--he'll make it work. I can have confidence in that.
Before I sign off, a couple more reasons I'm proud of J.J.:
1. We went to BW3's for dinner on Friday night. This is one of the first sit-down meals we've had out since J.J.'s stroke and our first visit to a restaurant that offered the NTN Trivia for quite some time. Although J.J. has discovered that it's difficult for him to focus on the trivia questions and use the Playmaker to record his answers at the same time, when he pushed the box over to me to control and had me enter his answers, he did very, very well. J.J. is still preternatuarally smart.
2. He bowled five games on Friday afternoon while he was waiting for me to leave work, including a game that included four strikes in a row and an additional five spares! I'm in awe, since if I break 100 I'm on fire!
In addition, his speech has really taken a turn for the better in the last day or so. This weekend is really the first time since the stroke that I've been able to forget for a while while interacting with him that there was every anything wrong.
Dare I say that life is approaching normal? Okay, it's not exactly as it was before, but it feels really good.
Friday, May 1, 2009
Update on our week
1. Monday, J.J. had a visit with an orthopedist to check out his right knee, which is still bothering him. The doctor felt it was a good idea to at least MRI it to see what's going on. So J.J. had an MRI Wednesday morning, and he has a follow up visit with the orthopedist on Monday. I'll keep you posted on the results.
2. Also on Monday, J.J. stopped by our family doctor's office to have his blood pressure checked. It had creeped back up to 150/80. Our doctor was on lunch, so the office staff said they'd check with her when she got back and would call to tell J.J. what she suggested. Late in the afternoon, she still hadn't called. So I did. Long story short, within minutes J.J. had a new prescription waiting for him at the pharmacy. He started it on Tuesday and seems to be doing well with it. He'll continue to stop in twice a week at the doctor's office to have his blood pressure monitored.
3. Tuesday we met with the counselor at Voc. Rehab. What a trip. Just walking into the (dingy, too-small, cheaply furnished) office and interacting with the (rude, bored, attitude-laden) receptionist made me realize that we are now dealing with "the system". And it was amazing how quickly the counselor's attitude changed when she looked at J.J.'s salary on the paperwork. Which really ticked me off. Why should it matter how much someone makes? If J.J. were making minimum wage and his goal were to return to this job, that should be the counselor's aim. Boy, am I on a soapbox today! Anyway, the counselor wants J.J. to have a neuropsychological evaluation, which should more specifically pinpoint his deficits and help drive a plan to accomodate these while J.J. gets back to work. But he's not scheduled for the neuropsych eval until 5/28. and we're really hoping he may be back to work by then anyway. So we'll see what happens.
4. Tonight is J.J.'s follow up sleep study. He has to be at RHI at 8:30 p.m. He's not looking forward to this at all. He's still not sleeping well with the CPAP on. Hopefully they'll show that he no longer needs it, or at least that he can be downgraded to oxygen.
5. Last night we had a wonderful date night. We went bowling first (I haven't been for a couple of years and was really surprised by what a good workout it is!) and then did our grocery shopping for the week. The bowling is excellent therapy for J.J. His speech was loads better afterwards, and during the games, he sounded just like he did pre-stroke. No lags in finding words or anything. It was amazing. So he's going back to bowl a couple more games this afternoon.
6. Since the shopping is done and the house is clean(ish), I might get to relax a little this weekend! Kids will be at my parents' house, so I'll even be alone tonight. I'm planning to get caught up on some work stuff--if I'm up all night, it's okay because J.J. probably will be too. We can sleep tomorrow.
7. Today is nine years since my grandfather passed away. May 1 is always kind of a sad day for me, and this year it's even worse, because...
8. May is National Stroke Awareness Month. I can't believe that this has such a personal implication this year--I don't even know that I heard anything about it last year. But anyway, please take this opportunity to educate yourself on the signs of stroke and on any risk factors you can control. I'll post more on this later.
Okay, enough for now. Got lots of work to do!
2. Also on Monday, J.J. stopped by our family doctor's office to have his blood pressure checked. It had creeped back up to 150/80. Our doctor was on lunch, so the office staff said they'd check with her when she got back and would call to tell J.J. what she suggested. Late in the afternoon, she still hadn't called. So I did. Long story short, within minutes J.J. had a new prescription waiting for him at the pharmacy. He started it on Tuesday and seems to be doing well with it. He'll continue to stop in twice a week at the doctor's office to have his blood pressure monitored.
3. Tuesday we met with the counselor at Voc. Rehab. What a trip. Just walking into the (dingy, too-small, cheaply furnished) office and interacting with the (rude, bored, attitude-laden) receptionist made me realize that we are now dealing with "the system". And it was amazing how quickly the counselor's attitude changed when she looked at J.J.'s salary on the paperwork. Which really ticked me off. Why should it matter how much someone makes? If J.J. were making minimum wage and his goal were to return to this job, that should be the counselor's aim. Boy, am I on a soapbox today! Anyway, the counselor wants J.J. to have a neuropsychological evaluation, which should more specifically pinpoint his deficits and help drive a plan to accomodate these while J.J. gets back to work. But he's not scheduled for the neuropsych eval until 5/28. and we're really hoping he may be back to work by then anyway. So we'll see what happens.
4. Tonight is J.J.'s follow up sleep study. He has to be at RHI at 8:30 p.m. He's not looking forward to this at all. He's still not sleeping well with the CPAP on. Hopefully they'll show that he no longer needs it, or at least that he can be downgraded to oxygen.
5. Last night we had a wonderful date night. We went bowling first (I haven't been for a couple of years and was really surprised by what a good workout it is!) and then did our grocery shopping for the week. The bowling is excellent therapy for J.J. His speech was loads better afterwards, and during the games, he sounded just like he did pre-stroke. No lags in finding words or anything. It was amazing. So he's going back to bowl a couple more games this afternoon.
6. Since the shopping is done and the house is clean(ish), I might get to relax a little this weekend! Kids will be at my parents' house, so I'll even be alone tonight. I'm planning to get caught up on some work stuff--if I'm up all night, it's okay because J.J. probably will be too. We can sleep tomorrow.
7. Today is nine years since my grandfather passed away. May 1 is always kind of a sad day for me, and this year it's even worse, because...
8. May is National Stroke Awareness Month. I can't believe that this has such a personal implication this year--I don't even know that I heard anything about it last year. But anyway, please take this opportunity to educate yourself on the signs of stroke and on any risk factors you can control. I'll post more on this later.
Okay, enough for now. Got lots of work to do!
People say the stupidest things
I sat down to give you an update blog entry about all of the appointments and stuff that we've done this week, but I'm too angry to concentrate on that, so you get this instead. I'll do the other in a minute.
This morning I attended a meeting of the local chapter of the Financial Planning Association. One of the speakers invited to this meeting was a psychologist/sales coach whose presentation focused on the differences in the communication styles (and therefore, buying styles) of women vs. men. At one point during the presentation, the speaker said something along these lines:
"Men communicate using one area of the brain, Broca's area. If a man has a stroke in this area, he'll never talk again. Which is not necessarily a bad thing. Pull up a Lazy Boy, give him a remote and a bag of Cheetos and he'll be happy for at least a decade."
And of course, the rest of the audience laughed riotously. And immediately my ears started ringing and I felt my face getting flushed. Because for one, I know his statement was a fallacy. J.J.'s stroke happened in EXACTLY this area of the brain. And he can speak. He speaks more every day. Secondly, there is no recliner, TV show or salty snack food that can appease him and make this better. And making light of the third leading cause of death and the leading cause of disability in this country, on the FIRST DAY of National Stroke Awareness Month, is just a really, really bad idea--almost everyone knows someone who has been impacted by stroke and his comments were sure to offend some audience members.
They offended me. So I got up and left. And I'll be writing to the presenter and the FPA to (politely) express my concerns.
What a jerk.
This morning I attended a meeting of the local chapter of the Financial Planning Association. One of the speakers invited to this meeting was a psychologist/sales coach whose presentation focused on the differences in the communication styles (and therefore, buying styles) of women vs. men. At one point during the presentation, the speaker said something along these lines:
"Men communicate using one area of the brain, Broca's area. If a man has a stroke in this area, he'll never talk again. Which is not necessarily a bad thing. Pull up a Lazy Boy, give him a remote and a bag of Cheetos and he'll be happy for at least a decade."
And of course, the rest of the audience laughed riotously. And immediately my ears started ringing and I felt my face getting flushed. Because for one, I know his statement was a fallacy. J.J.'s stroke happened in EXACTLY this area of the brain. And he can speak. He speaks more every day. Secondly, there is no recliner, TV show or salty snack food that can appease him and make this better. And making light of the third leading cause of death and the leading cause of disability in this country, on the FIRST DAY of National Stroke Awareness Month, is just a really, really bad idea--almost everyone knows someone who has been impacted by stroke and his comments were sure to offend some audience members.
They offended me. So I got up and left. And I'll be writing to the presenter and the FPA to (politely) express my concerns.
What a jerk.
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