Lilly - yes, I did enjoy my spa day. Very much. And my nail polish (which I never put on) hasn't chipped yet! They did an excellent job on my hair as well. It was a most relaxing day!
7 key components to relationships:
Sandy - I have the "voice", but not the energy! LOL! Especially right this moment. I keep thinking, "maybe....when he is well." and then I have to remember - he is not going to get well. This is probably as good as it will ever get.
Lilly, yes, I agree. It is better to remain together instead of being totally alone. But at the very same time, I can be so alone even when he is in the house. So I totally understand what you are saying.
tunnel vision:
Crazy wife. Nope, we haven't found out anything. The common agreement seems to be that it could be related to his ongoing anemia. Everyone so far has said to discuss it with the cardiologist. We see her next Wednesday. And boy! Is my list of questions for her endless! I hope she has an hour set aside (yeah, right!) LOL!
I'm starting to think there are no answers.
So, he got into the truck and drove today. And he made it home. Tomorrow he is going to drive an hour to visit his grandkids. I'm not going. I have classes to teach. Am I worried about him getting too tired? Of course I am. And I asked him to call and make sure the kids are not sick....did he do that? Of course he didn't!
Tom's wife - your comment is spot on - men are just stupid! And was it you that received a not-so-nice comment from a diabetic? Oh....join my club! I've been getting them for years! I just hit the delete button. Which pisses them off even more! I had one reader who would start their comment with "I know you will delete this...." so I would literally delete it before I even read it! LOL!!! No idea to this day what they wanted to say and I finally started banning them from making comments.
There are idiots out there. That's for sure!
Which leads me right into my next line of thought. If/when hubby retires, his health insurance premiums will go from $200 per month to $900 per month. Yikes!!! He can be added to my policy for $200 per month - which is what we will do. But it got me to thinking about something. How many diabetics out there marry their spouse in order to be added to his/her health insurance policy? It has to be a very scary thing to have a disease and not have insurance. My hubby has mentioned it several times. I know it bothers him. It's enough of a reason that the thought I might ever leave him scares him to death.
And that got me to thinking....just how honest would a diabetic be? Or how dishonest? Single. Needs health insurance. Meets someone who has really good health insurance. Might fall in "love" just to get the benefits? Interesting concept, huh? Desperate people do desperate things. That is a fact. Is health care reform going to help this? So far.....all it's done for us in cause and increase in premiums and a decrease in care/coverage. Our pharmacy formulary has shrunk. We now pay increased fees for meds we used to get for $20 per rx and these very same meds are no longer on the formulary.
A good example. His back brace was $1200. Insurance paid $1000. He had to pay $200. I did not know this at the time, but I went on ebay and the exact same identical back brace was going for $35 and according to past closed auctions, that was about the average price people were getting for it. Why on earth was it $1200 to start out with??? I really don't think it was lined with gold! LOL!!!
A rotater type walker is $100 and up most places. But I found one for my mom at a garage sale for $30. I told hubby I'm going to start looking for wheelchairs now. I found our adjustable beds - made by Posture Pedic - on craigslist. One was $200, the other was just $75. And these beds retail for more than $1000. My youngest sister orders all of her Rx online through a Canadian pharmacy. She rarely visits a doctor. I'm getting ready to order amoxicillin the same way. I always stock up whenever we go on a cruise and stop at a Mexican port. First thing I look for is a pharmacy! Quadraderm is a great product they sell that you can't get in the US. Use it for rashes and itches. It's amazing. I still have a whole tube, but will order online next time. (I don't think hubby is going to be up for a cruise in quite some time to come!)
I've had a discussion with hubby that if he plans to retire, he is going to have to cut his medical expenses in half! Well, we just accomplished that by converting to mail order RX through our HMO. He gets 2 months filled for the price of one by doing it online and via mail. How about that! So I am learning there are little things we can do to save money.
Enough of my comments tonight!
DW
Friday, April 15, 2011
Thursday, April 14, 2011
Doctor's update
We went to see his surgeon today.
Brought up the fact that he is still anemic. That he will get up at 7 am and be asleep at 9 am. That he is having tunnel vision with a feeling of passing out.
All the surgeon did was look at his back xrays, discuss the continuing numbness in his thighs, blame that on diabetic neuropathy and release him. We don't return til 1/12. He can drive. He can start lifting things - as much as he wants.
Xrays show that his back above the fusion is starting to curve. No, he will never get it fixed. No matter how bad it gets.
Numbness in his thighs.
How does the surgeon think he's going to sense that he's pushing the brakes in far enough?
I swear! Doctors are all idiots! And I actually really like this guy. He is a great surgeon. But he has tunnel vision himself - he only wants to talk about the back...not the whole being.
We go see the cardiologist next Wednesday. She is my only hope.
I'm sure he will drive somewhere tomorrow. Just because he can!
Thanks to everyone for all of your kind comments. I will get to them in a few days....when there is a lull in everything that's going on.
On the job front - his boss had a staff meeting today and said it was just a "fire drill" - to see how they would react. This is beyond stupid because the next time they ask hubby to give up an employee, he's going to think it's just a fire drill again. Remember it brought him to tears? Just so totally stupid.
Emotional day to say the least! Time for bed!
DW
Brought up the fact that he is still anemic. That he will get up at 7 am and be asleep at 9 am. That he is having tunnel vision with a feeling of passing out.
All the surgeon did was look at his back xrays, discuss the continuing numbness in his thighs, blame that on diabetic neuropathy and release him. We don't return til 1/12. He can drive. He can start lifting things - as much as he wants.
Xrays show that his back above the fusion is starting to curve. No, he will never get it fixed. No matter how bad it gets.
Numbness in his thighs.
How does the surgeon think he's going to sense that he's pushing the brakes in far enough?
I swear! Doctors are all idiots! And I actually really like this guy. He is a great surgeon. But he has tunnel vision himself - he only wants to talk about the back...not the whole being.
We go see the cardiologist next Wednesday. She is my only hope.
I'm sure he will drive somewhere tomorrow. Just because he can!
Thanks to everyone for all of your kind comments. I will get to them in a few days....when there is a lull in everything that's going on.
On the job front - his boss had a staff meeting today and said it was just a "fire drill" - to see how they would react. This is beyond stupid because the next time they ask hubby to give up an employee, he's going to think it's just a fire drill again. Remember it brought him to tears? Just so totally stupid.
Emotional day to say the least! Time for bed!
DW
the diabetic generational delima
hubby is diabetic and non-compliant
hubby's father is diabetic and non-compliant
hubby's grandfather died from diabetes, probably non-compliant
hubby's great grandfather died from diabetes, probably no drugs at that time
I have witnessed hubby's father yelling and screaming, angry as a bear, in a diabetic low. He used to get so mad at me and just scream his head off at me as I sat there in a stupor trying to figure out what it was I had done to tick the guy off.
I finally realized what was going on and now I simply inform him that he does not have the "right" to talk to me that way. Most often he backs off and goes into the other room. I also do not go visit my in-laws one second more than I absolutely have to. I do not encourage my husband to go visit them either.
Additionally, my father-in-law has no recollection of any of these outbursts of his. He will deny that they ever happen.
So here's the delima.
My husband grew up in a house with this going on all the time. Dad screaming his head off at him. Mom screaming at dad trying to get dad's sugar levels to "fight" back up. Dad not remembering it happened at all and denying everything.
Hubby acquired diabetes at the age of 22. He most likely was the same way around his kids.
But what I have witnessed in the past few years:
Father-in-law gets into a low, gets angry, screams at the family. Hubby is in a low at the same time....doesn't remember his dad screaming at anyone.
What an absolute merry-go-round! Father and son, both non-compliant diabetics....trying to make the rest of us slowly go nuts! LOLOL!
My mother-in-law has a very unique way of dealing with my father-in-law's lows. She has shingles in her left face/eye area. The moment that he starts to go low, she has an "attack". She will "take to her bed" letting our schrill screams of pain. I believe that this works to raise his glucose levels as his adrenaline kicks in because he has to "rescue" her from her pain. He immediately rushes to her side and starts to be her "nurse" trying to comfort her and get the screams of pain to stop. It's an amazing scenario to watch...but it not only works on her husband, it works on her son (my hubby) to get him out of a low.
How do I know her "attacks" are fake? She has never ever had one when the guys are out of the house. But the minute they return.....her shingles flare up. Maybe she's more brilliant than I give her credit for being!
All that screaming and yelling and no one remembers a thing....except the non-diabetic family members who were the victims of the diabetic lows of their spouses.
But in some sick, sad, twisted way...it helps me. I can now talk back to hubby and father-in-law, stand up to both of them, inform them they do not have my permission to act like that....be aggressive and demand they shut up because a) they will not remember what I said, and b) sometimes a shocking statement like that will truly make them shut up!
How on earth did I get so blessed to have TWO non-compliant diabetics in my life???
hubby's father is diabetic and non-compliant
hubby's grandfather died from diabetes, probably non-compliant
hubby's great grandfather died from diabetes, probably no drugs at that time
I have witnessed hubby's father yelling and screaming, angry as a bear, in a diabetic low. He used to get so mad at me and just scream his head off at me as I sat there in a stupor trying to figure out what it was I had done to tick the guy off.
I finally realized what was going on and now I simply inform him that he does not have the "right" to talk to me that way. Most often he backs off and goes into the other room. I also do not go visit my in-laws one second more than I absolutely have to. I do not encourage my husband to go visit them either.
Additionally, my father-in-law has no recollection of any of these outbursts of his. He will deny that they ever happen.
So here's the delima.
My husband grew up in a house with this going on all the time. Dad screaming his head off at him. Mom screaming at dad trying to get dad's sugar levels to "fight" back up. Dad not remembering it happened at all and denying everything.
Hubby acquired diabetes at the age of 22. He most likely was the same way around his kids.
But what I have witnessed in the past few years:
Father-in-law gets into a low, gets angry, screams at the family. Hubby is in a low at the same time....doesn't remember his dad screaming at anyone.
What an absolute merry-go-round! Father and son, both non-compliant diabetics....trying to make the rest of us slowly go nuts! LOLOL!
My mother-in-law has a very unique way of dealing with my father-in-law's lows. She has shingles in her left face/eye area. The moment that he starts to go low, she has an "attack". She will "take to her bed" letting our schrill screams of pain. I believe that this works to raise his glucose levels as his adrenaline kicks in because he has to "rescue" her from her pain. He immediately rushes to her side and starts to be her "nurse" trying to comfort her and get the screams of pain to stop. It's an amazing scenario to watch...but it not only works on her husband, it works on her son (my hubby) to get him out of a low.
How do I know her "attacks" are fake? She has never ever had one when the guys are out of the house. But the minute they return.....her shingles flare up. Maybe she's more brilliant than I give her credit for being!
All that screaming and yelling and no one remembers a thing....except the non-diabetic family members who were the victims of the diabetic lows of their spouses.
But in some sick, sad, twisted way...it helps me. I can now talk back to hubby and father-in-law, stand up to both of them, inform them they do not have my permission to act like that....be aggressive and demand they shut up because a) they will not remember what I said, and b) sometimes a shocking statement like that will truly make them shut up!
How on earth did I get so blessed to have TWO non-compliant diabetics in my life???
Wednesday, April 13, 2011
7 key components to relationships
I thought I would take a look at these from the view of a wife of a diabetic:
Seven Key Components
1. Emotional.
One way to begin evaluating your relationship is to ask yourself whether or not you basically “like” the person.
Is he or she really your close friend? Do you share interests? Is the person a good companion? Is your partner romantic, and do you feel romantically toward your partner?
Before diabetes...we were active ATVers. This has ended. He built N-scale model trains. Due to neuropathy, this has stopped. We went to the movies every Friday, this has stopped. I can't think of any interests we have in common any more. He prefers to stay home 24/7. I love getting together with my art pals. 100% sexual realtions stopped 3 years ago due to impotence caused by all his meds. Yes...no sex in 3 years. Sigh.
But he is a good companion....when he is not having a high or low.
2. Intellectual
Long-term, positive and sustained relationships are most successful when both partners value being involved with a growing, caring and intelligent person. Is your partner interesting? Is he or she on a search for learning? Is it important for him or her to do new things and do them well? Level of education is not necessarily an indicator on intellectual ability.
I think hubby is very interesting when not dealing with complications from diabetes. He has a brilliant mind - one of the things that attracted me to him. I love when he finds new computer gadgets and shares them with me. But I am truly concerned about his short term memory abilities since surgery. Only time will tell if they have been impared.
3. Physical and Sexual
In most new relationships, this area usually gets a very high score. As couples fall into a sexual routine, however, their romantic and loving behavior often is replaced with a contest to see who can help the other person reach orgasm fastest.
The physical aspect of a relationship requires work, attention to detail and an open, positive attitude. That attractive person you fell in love with 10 years ago may be now be bald, overweight or developing crow’s feet or other signs of aging. Your attraction to your partner needs a basis more than skin deep to last through a lifetime together.
Because he can no longer perform, he has no desire to even cuddle. He says the neuropathy in his arms makes it uncomfortable for me to touch him. We occasionally give each other a peck on the lips, zero passionate kissing as he says it depresses him. ;I tried to explain that there are numerous ways we can take care of this and he said he has no interest whatsoever. I have given up trying. It really is sad.
4. Communication
If the problems are minor and a couple communicates well together, the couple can often find solutions that prevent further deterioration of the relationship. Good communication requires being willing and having an effective style of communication. One method that works well is known as active listening. Sit down with your loved one, hold hands, look each other in the eyes and ask your partner to tell you what he or she needs to say. You then summarize and repeat back what your partner said before responding. Then your partner remains quiet and listens closely as you express your attitudes or feelings about the topic. He or she then summarizes what you have said before responding to your comments.
Well, you cannot communicate with a diabetic who is having a high/low. And because his diabetes is still out of control....that's most of the time around here. I don't think we have communication according to the above at all.
5. Timing
Sometimes people who are well matched do not stay together because the timing isn’t right. One person might be willing to make a total commitment but the other person will not because of issues related to school, finances or family
Timing is a major factor that can determine whether or not a couple will commit to marriage. Within a marriage, the couple’s daily schedule and whether they spend much time together, or, more important, enjoy spending that time together, are important influences on the relationship.
This one is interesting. We probably spend too much time together since he works from home and I am retired. Yet at the same time, we are not really "together". Do we enjoy being together? I think at this point is is more an alternative to being alone and we prefer being together than the being alone.
6. Attitudes About Mother or Father
Many experts believe that one of the major predictors of whether or not a couple will sustain a long-term relationship is the woman's attitude about her father and the man's attitude about his mother. If the woman's father was physically, sexually or verbally abusive, it might be very difficult for her to trust or respect men. If the man doesn’t respect or trust his mother, his ability to respect and trust women could be greatly diminished.
;I think we meet the above statement. But I think they completely left out how the woman feels about her husband's mother! LOL! That alone would be enough cause for me to end this marriage!
7. Miscellaneous
Other important aspects of a relationship that you should carefully consider are:
If you marry someone who is passionate about saving money and you love spending it, you are likely to have serious financial disagreements that could even lead to ending the marriage.
Many couples have conflicts about child rearing. Others fight about whether or not to have household pets or go camping, or about food or smoking. Think about what’s important to you and to your partner, and see if there are major differences that could result in conflict.
We have no financial arguments as our finances are separate. Our kids are grown. We have 2 dogs that I tolerate for his sake....I have never had indoor pets in my life and will not have them again.Neither one of us smoke. We are at opposite ends of the earth when it comes to religious beliefs.
These questions were presented on a diabetes website. Interesting to go through the process of applying them to our relationship. But I think the website left out so much.
1. Most of us are "blind" when we fall in love and would answer the questions much differently than we would after being married for 5, 10, 15, 20 years. Take into consideration as well that diabetes would have progressed over that same 5, 10,15, 20 years and the partner with the disease would no longer be the partner who first entered into the relationship.
2. A "close friend" at the beginning of a relationship could be a complete stranger after 20 years of marriage due to complications of diabetes, neuropathy, memory loss and more.
I could go on forever, you get the idea! So, I decided to look up information about the author. I doubt it's been written by the spouse of a diabetic!!!
R. Keith Campbell, RPH, CDE. Part of the dlife advisory board. Associate Dean and professor of PHARMACY Practice. an "intellectual"leader in the field of diabetes. Recipient of the American Association of Diabetes Educators Distinguished Service Award. Author of ADA/PDR Medications for the Treatment of Diabetes by Physicians (wonder if he knows about Humulin R-U 500 in hospitals???)
So nowhere did I find that he has diabetes or is married to a diabetic. Yet he is writing about the relationships of spouses of diabetics. Interesting, huh?
Hard for me to fathom how anyone who has never experienced this can write about it. :o)
DW
So, I think there are so many things that website left off!
Seven Key Components
1. Emotional.
One way to begin evaluating your relationship is to ask yourself whether or not you basically “like” the person.
Is he or she really your close friend? Do you share interests? Is the person a good companion? Is your partner romantic, and do you feel romantically toward your partner?
Before diabetes...we were active ATVers. This has ended. He built N-scale model trains. Due to neuropathy, this has stopped. We went to the movies every Friday, this has stopped. I can't think of any interests we have in common any more. He prefers to stay home 24/7. I love getting together with my art pals. 100% sexual realtions stopped 3 years ago due to impotence caused by all his meds. Yes...no sex in 3 years. Sigh.
But he is a good companion....when he is not having a high or low.
2. Intellectual
Long-term, positive and sustained relationships are most successful when both partners value being involved with a growing, caring and intelligent person. Is your partner interesting? Is he or she on a search for learning? Is it important for him or her to do new things and do them well? Level of education is not necessarily an indicator on intellectual ability.
I think hubby is very interesting when not dealing with complications from diabetes. He has a brilliant mind - one of the things that attracted me to him. I love when he finds new computer gadgets and shares them with me. But I am truly concerned about his short term memory abilities since surgery. Only time will tell if they have been impared.
3. Physical and Sexual
In most new relationships, this area usually gets a very high score. As couples fall into a sexual routine, however, their romantic and loving behavior often is replaced with a contest to see who can help the other person reach orgasm fastest.
The physical aspect of a relationship requires work, attention to detail and an open, positive attitude. That attractive person you fell in love with 10 years ago may be now be bald, overweight or developing crow’s feet or other signs of aging. Your attraction to your partner needs a basis more than skin deep to last through a lifetime together.
Because he can no longer perform, he has no desire to even cuddle. He says the neuropathy in his arms makes it uncomfortable for me to touch him. We occasionally give each other a peck on the lips, zero passionate kissing as he says it depresses him. ;I tried to explain that there are numerous ways we can take care of this and he said he has no interest whatsoever. I have given up trying. It really is sad.
4. Communication
If the problems are minor and a couple communicates well together, the couple can often find solutions that prevent further deterioration of the relationship. Good communication requires being willing and having an effective style of communication. One method that works well is known as active listening. Sit down with your loved one, hold hands, look each other in the eyes and ask your partner to tell you what he or she needs to say. You then summarize and repeat back what your partner said before responding. Then your partner remains quiet and listens closely as you express your attitudes or feelings about the topic. He or she then summarizes what you have said before responding to your comments.
Well, you cannot communicate with a diabetic who is having a high/low. And because his diabetes is still out of control....that's most of the time around here. I don't think we have communication according to the above at all.
5. Timing
Sometimes people who are well matched do not stay together because the timing isn’t right. One person might be willing to make a total commitment but the other person will not because of issues related to school, finances or family
Timing is a major factor that can determine whether or not a couple will commit to marriage. Within a marriage, the couple’s daily schedule and whether they spend much time together, or, more important, enjoy spending that time together, are important influences on the relationship.
This one is interesting. We probably spend too much time together since he works from home and I am retired. Yet at the same time, we are not really "together". Do we enjoy being together? I think at this point is is more an alternative to being alone and we prefer being together than the being alone.
6. Attitudes About Mother or Father
Many experts believe that one of the major predictors of whether or not a couple will sustain a long-term relationship is the woman's attitude about her father and the man's attitude about his mother. If the woman's father was physically, sexually or verbally abusive, it might be very difficult for her to trust or respect men. If the man doesn’t respect or trust his mother, his ability to respect and trust women could be greatly diminished.
;I think we meet the above statement. But I think they completely left out how the woman feels about her husband's mother! LOL! That alone would be enough cause for me to end this marriage!
7. Miscellaneous
Other important aspects of a relationship that you should carefully consider are:
If you marry someone who is passionate about saving money and you love spending it, you are likely to have serious financial disagreements that could even lead to ending the marriage.
Many couples have conflicts about child rearing. Others fight about whether or not to have household pets or go camping, or about food or smoking. Think about what’s important to you and to your partner, and see if there are major differences that could result in conflict.
We have no financial arguments as our finances are separate. Our kids are grown. We have 2 dogs that I tolerate for his sake....I have never had indoor pets in my life and will not have them again.Neither one of us smoke. We are at opposite ends of the earth when it comes to religious beliefs.
These questions were presented on a diabetes website. Interesting to go through the process of applying them to our relationship. But I think the website left out so much.
1. Most of us are "blind" when we fall in love and would answer the questions much differently than we would after being married for 5, 10, 15, 20 years. Take into consideration as well that diabetes would have progressed over that same 5, 10,15, 20 years and the partner with the disease would no longer be the partner who first entered into the relationship.
2. A "close friend" at the beginning of a relationship could be a complete stranger after 20 years of marriage due to complications of diabetes, neuropathy, memory loss and more.
I could go on forever, you get the idea! So, I decided to look up information about the author. I doubt it's been written by the spouse of a diabetic!!!
R. Keith Campbell, RPH, CDE. Part of the dlife advisory board. Associate Dean and professor of PHARMACY Practice. an "intellectual"leader in the field of diabetes. Recipient of the American Association of Diabetes Educators Distinguished Service Award. Author of ADA/PDR Medications for the Treatment of Diabetes by Physicians (wonder if he knows about Humulin R-U 500 in hospitals???)
So nowhere did I find that he has diabetes or is married to a diabetic. Yet he is writing about the relationships of spouses of diabetics. Interesting, huh?
Hard for me to fathom how anyone who has never experienced this can write about it. :o)
DW
So, I think there are so many things that website left off!
Tuesday, April 12, 2011
Ketoacidosis
Continuing with my learning process. I did not know what this was. OK, I did not even have a clue. But I googled diabetes fruity putrid smell. Why?
About 3 years ago, hubby had this strange smell about him. I thought it was during the period when he was incontinent and I just assumed it was coming from the depends he was wearing. But he got past that, past depends, and still had this strange smell. Sort of fruity. A bit like sweet pickle juice maybe. But it was strong enough that it made me feel sick to my stomach.
Then there was an episode of NCIS where the young guy in the morgue who has diabetes said that he had that order when his sugar was high. And that episode stuck with me.
Today, I walked into our bedroom and definitely smelled that smell again.
Hubby's last A1c was 7.3. That's down from 9.2. He's been high for at least the last 3 years on his A1c.
A fruity odor to the breath occurs as the body attempts to get rid of excess acetone through the breathing. This is a sign of ketoacidosis, which may occur in diabetes It is a potentially life-threatening condition. Usually in type 1, but in rare cases, it can occur in type 2 diabetes. The body is uable to process and use glucose properly. High glucose levels.
The body burns fat for the cells to use for energy. Results in production of harmful acids called ketones. High levels of ketones can poison the body leading to diabetic ketoacidosis.
Hubby's phosphorus levels are normal. As with all of his labs, they tend to be inconsistent with anything required to make a diagnosis of something else.
If the fruity smell remains, I will have him ask his doctor about it.
Once again, today, he said that he just wanted to die. He is tired of being tired. I don't thinkhis anemia is improving at all. And that can't be good. I asked him to call his doctor and ask him to run newlabs. We'll see if he does that or not.
About 3 years ago, hubby had this strange smell about him. I thought it was during the period when he was incontinent and I just assumed it was coming from the depends he was wearing. But he got past that, past depends, and still had this strange smell. Sort of fruity. A bit like sweet pickle juice maybe. But it was strong enough that it made me feel sick to my stomach.
Then there was an episode of NCIS where the young guy in the morgue who has diabetes said that he had that order when his sugar was high. And that episode stuck with me.
Today, I walked into our bedroom and definitely smelled that smell again.
Hubby's last A1c was 7.3. That's down from 9.2. He's been high for at least the last 3 years on his A1c.
A fruity odor to the breath occurs as the body attempts to get rid of excess acetone through the breathing. This is a sign of ketoacidosis, which may occur in diabetes It is a potentially life-threatening condition. Usually in type 1, but in rare cases, it can occur in type 2 diabetes. The body is uable to process and use glucose properly. High glucose levels.
The body burns fat for the cells to use for energy. Results in production of harmful acids called ketones. High levels of ketones can poison the body leading to diabetic ketoacidosis.
Hubby's phosphorus levels are normal. As with all of his labs, they tend to be inconsistent with anything required to make a diagnosis of something else.
If the fruity smell remains, I will have him ask his doctor about it.
Once again, today, he said that he just wanted to die. He is tired of being tired. I don't thinkhis anemia is improving at all. And that can't be good. I asked him to call his doctor and ask him to run newlabs. We'll see if he does that or not.
Monday, April 11, 2011
Ahhh.....tomorrow!
Hubby's staff gifted me with a full day at a local spa and the day is tomorrow! Can't wait! My "reward" for taking care of him the last 2 months.
But I wonder, can you make yourself too busy....trying to escape caregiving, the illness?
I taught all day Saturday.
Yesterday I attended a genealogy meeting in the morning, then taught a little girl how to sew in the afternoon.
Today, we got puppy food, groeries, went out to lunch
Tomorrow is my spa day
Wednesday I teach one craft class in the morning
Thursday, we go to the surgeon's office and hour away, then over to assist an elderly couple with their computers
Friday I have a playday with another artist
Saturday - I teach again all day.
Hmmmm.....and I wonder why life is flying by.
So, update on him. I can't tell, but I'd bet his labs are now going in the wrong direction. For whatever reason, when we were in the pet store today, I had this bizzare thought go across my mind. What would I do if he passed out on the floor right there? He doesn't want me to call 911 and the store isn't going to want him on the floor and I couldn't begin to lift him up. And then I imagined myself smacking myself across the face and told myself to stop the nonsense worrying!!! LOL!
We went to lunch next and here's the kicker. He said, "I had another one of those spells where I get tunnel vision when we were in the pet store. I had to really concentrate to keep from passing out."
WOW!!! How bizzare is that? I was thinking about him passing out at the very moment he was focusing on trying not to pass out.
Spooky if you ask me!
So we were talking about it and he tells me that this is happening several times day. It's not getting any better. He feels like he is getting weaker, not stronger. That was evidenced this morning when he got up at 6 am, got on a business call at 7 am, came out and laid down on the sofa at 7:30 am with his headset in and the phone on..and fell asleep. He was snoring! Thank goodness for the mute button. But how on earth can he keep working when he can't stay awake???
Next, he confesses that not only is he having regular episodes of tunnel vision, trying not to pass out, he has episodes where he is so weak, he cannot move.
I suggested that he contact his physician to discuss it with him. Think that's going to happen???
This evening, he was lying on the sofa and looked at me and said, "I don't know if I can get up." He did manage to get up, but I could tell it was very difficult for him. He says his glucose is running around 160 which, for him, is really low. He said, "I just do not want to go on if I don't have the energy to go on." And that totally makes sense to me.
I'm truly praying that he will bring all this up with the surgeon on Thursday. But he can be so vain at times and he wants everyone to think that he is recovering just fine. I do not want the surgeon to release him to drive if he is going to be having these spells where he has to concentrate in order to not pass out. Oiy!!!
DW
But I wonder, can you make yourself too busy....trying to escape caregiving, the illness?
I taught all day Saturday.
Yesterday I attended a genealogy meeting in the morning, then taught a little girl how to sew in the afternoon.
Today, we got puppy food, groeries, went out to lunch
Tomorrow is my spa day
Wednesday I teach one craft class in the morning
Thursday, we go to the surgeon's office and hour away, then over to assist an elderly couple with their computers
Friday I have a playday with another artist
Saturday - I teach again all day.
Hmmmm.....and I wonder why life is flying by.
So, update on him. I can't tell, but I'd bet his labs are now going in the wrong direction. For whatever reason, when we were in the pet store today, I had this bizzare thought go across my mind. What would I do if he passed out on the floor right there? He doesn't want me to call 911 and the store isn't going to want him on the floor and I couldn't begin to lift him up. And then I imagined myself smacking myself across the face and told myself to stop the nonsense worrying!!! LOL!
We went to lunch next and here's the kicker. He said, "I had another one of those spells where I get tunnel vision when we were in the pet store. I had to really concentrate to keep from passing out."
WOW!!! How bizzare is that? I was thinking about him passing out at the very moment he was focusing on trying not to pass out.
Spooky if you ask me!
So we were talking about it and he tells me that this is happening several times day. It's not getting any better. He feels like he is getting weaker, not stronger. That was evidenced this morning when he got up at 6 am, got on a business call at 7 am, came out and laid down on the sofa at 7:30 am with his headset in and the phone on..and fell asleep. He was snoring! Thank goodness for the mute button. But how on earth can he keep working when he can't stay awake???
Next, he confesses that not only is he having regular episodes of tunnel vision, trying not to pass out, he has episodes where he is so weak, he cannot move.
I suggested that he contact his physician to discuss it with him. Think that's going to happen???
This evening, he was lying on the sofa and looked at me and said, "I don't know if I can get up." He did manage to get up, but I could tell it was very difficult for him. He says his glucose is running around 160 which, for him, is really low. He said, "I just do not want to go on if I don't have the energy to go on." And that totally makes sense to me.
I'm truly praying that he will bring all this up with the surgeon on Thursday. But he can be so vain at times and he wants everyone to think that he is recovering just fine. I do not want the surgeon to release him to drive if he is going to be having these spells where he has to concentrate in order to not pass out. Oiy!!!
DW
Saturday, April 09, 2011
My other life...
Today I taught art all day long. Literally. 9:30 am - 8:00 pm.
It was great.
A complete total getaway.
Did not think about diabetes once.
Did not worry about a thing.
I'm exhausted tonight, but it's such a peaceful exhaustion.
My one day a week to completely escape!
Life is good.
No decision on his work...everything has been put on hold by upper management. And the weekend is giving him a break from the stress.
Thanks for the comments...welcome Angus!
It was great.
A complete total getaway.
Did not think about diabetes once.
Did not worry about a thing.
I'm exhausted tonight, but it's such a peaceful exhaustion.
My one day a week to completely escape!
Life is good.
No decision on his work...everything has been put on hold by upper management. And the weekend is giving him a break from the stress.
Thanks for the comments...welcome Angus!
Thursday, April 07, 2011
Back to work way too soon!
And the signs are starting to show up. This is a guy who NEVER cries.....and he has been on the brink of tears twice this week because of things going on at work. He works from home, but it's just as stressful. He missed a call while getting back xrays last week and they moved 3 of his key employees into other units. Then yesterday, he got a phone call to join an emergency meeting and he had one hour to give the name of an employee they could cut. It's a huge corporation and he has excellent income and benefits and can do all this from home. But his stress is beyond anything I have ever seen with him.
So, we decided that he has 3 options after a lengthy talk yesterday afternoon.....into the evening.
1. He can go back out on a 6 month short term leave with full pay and see what happens at the end of that time.
2. He can try for the company's long term disability. I'm certain that he qualifies. It would be 66% of his salary for 5 years and then he would have to retire. While on disability, he cannot work anywhere else.
3. they are offering a retirement package right now. He qualifies. He would get a buyout around $100K and then $1600 a month for the rest of his life. Certainly not much income. We could buy a small retirement home with the cash and help my sis take care of my mom. I'm all for this option. I have a retirement income and between the 2 of us, we would be ok. And there would be no restrictions on his working somewhere else.
We were both leaning towards # 3 and talking about whether to help my mom, a 100 mile move, or move 1000 miles and help his parents who are younger. I thought we could do both. Move close to my mom until she passes, then move again. HA! That went over like a lead balloon.
The other problem is that my mom lives in our HMO area. His parents - no idea what insurce we'd be with there. And because he would lose his health insurance if he retires and have to go on mine, I decided I get to pick! LOL! (Just kidding!)
I was up all night long because this is how his company does. Makes an announcement and gives you 24 hours (or less) to make your decision. They have not offered a retirement package in 2 years and have had about 8 reductions in staff. If he doesn't go with the package now, he may not get the option. And there is no guarantee that his name won't be put into the pot with the next reduction,
And we are certainly ill equipped to make this kind of a decision in 24 hours!
So, we agreed to sleep on it. He slept, I searched the internet for homes for sale!
Got up this morning and he is in the worst, most foul mood ever. I realize this is beyond stressful for him. Not only is he in the process of making a decision about himself, he's got to give up the name of an employee that he really is close with. It's just heart wrenching. Bottom line, he is simply not well enough to go through this amount of stress He should not be back at work. He will neer heal. And he is not well enough for us to move. But if he retires, we cannot stay in this house - it would be way to expensive to maintain. We might even end up in foreclosure or bankruptcy. I have no idea. But I feel my own ulcer brewing!!!
What I do know is that no matter what happens today.....we wil get through this. No matter what decision he makes, I will be here beside him, trying my best to support him.
I have decided to take the day off and just play. Called some artist pals and they are coming to the rescue and my sister is going to skype in, so we're going to have a party! Carrot cake in the oven making the house smell wonderful!!! At least I've learned how to take a "bad" moment and turn it around!
DW
So, we decided that he has 3 options after a lengthy talk yesterday afternoon.....into the evening.
1. He can go back out on a 6 month short term leave with full pay and see what happens at the end of that time.
2. He can try for the company's long term disability. I'm certain that he qualifies. It would be 66% of his salary for 5 years and then he would have to retire. While on disability, he cannot work anywhere else.
3. they are offering a retirement package right now. He qualifies. He would get a buyout around $100K and then $1600 a month for the rest of his life. Certainly not much income. We could buy a small retirement home with the cash and help my sis take care of my mom. I'm all for this option. I have a retirement income and between the 2 of us, we would be ok. And there would be no restrictions on his working somewhere else.
We were both leaning towards # 3 and talking about whether to help my mom, a 100 mile move, or move 1000 miles and help his parents who are younger. I thought we could do both. Move close to my mom until she passes, then move again. HA! That went over like a lead balloon.
The other problem is that my mom lives in our HMO area. His parents - no idea what insurce we'd be with there. And because he would lose his health insurance if he retires and have to go on mine, I decided I get to pick! LOL! (Just kidding!)
I was up all night long because this is how his company does. Makes an announcement and gives you 24 hours (or less) to make your decision. They have not offered a retirement package in 2 years and have had about 8 reductions in staff. If he doesn't go with the package now, he may not get the option. And there is no guarantee that his name won't be put into the pot with the next reduction,
And we are certainly ill equipped to make this kind of a decision in 24 hours!
So, we agreed to sleep on it. He slept, I searched the internet for homes for sale!
Got up this morning and he is in the worst, most foul mood ever. I realize this is beyond stressful for him. Not only is he in the process of making a decision about himself, he's got to give up the name of an employee that he really is close with. It's just heart wrenching. Bottom line, he is simply not well enough to go through this amount of stress He should not be back at work. He will neer heal. And he is not well enough for us to move. But if he retires, we cannot stay in this house - it would be way to expensive to maintain. We might even end up in foreclosure or bankruptcy. I have no idea. But I feel my own ulcer brewing!!!
What I do know is that no matter what happens today.....we wil get through this. No matter what decision he makes, I will be here beside him, trying my best to support him.
I have decided to take the day off and just play. Called some artist pals and they are coming to the rescue and my sister is going to skype in, so we're going to have a party! Carrot cake in the oven making the house smell wonderful!!! At least I've learned how to take a "bad" moment and turn it around!
DW
Wednesday, April 06, 2011
Needles, syringes, humulin R-U 100, U-500, the little differences that impact life!
By the end of this article, I hope you see how the hospital staff could have ended my husband's life because of simple mistakes, and a lack of education. When it comes to diabetes and hospital staff, I don't think there has been near enough education. And with the rapidly increasing number of diabetics out there....it's going to reach a crisis before too long.
Good article:
Click here
Humulin R U-500 concentrated is a form of Human insulin which is 500 units/ml and is 5 times more concentrated than Humulin R U-100 aka Humulin Regular or Regular Humulin. This is my starting base as this is what hubby takes.
BUT.....R U-500 is also called Regular Humulin (see the "R"?)
There is also Humulin R U-100 which is called Regular Humulin. Ahhh....see the confusion starting already???
U-500 (which is what I've decided to call the concentrated type) takes effect w/i 30 minutes (fast acting)
but it is also long-acting as it will last up to up to 24 hours duration
Note: If you take it at 7:00 am (breakfast) and 5 pm (dinner) there is a build-up, a half-life to the amount you take.
It is used in both type 1 and type 2 diabetes
It is useful for the treatment of insulin-resistant patients
It is used in diabetics who need a lot of insulin.
usually given 2 or 3 times daily before meals. Should be followed by a meal within 30 minutes of administration
may be administered in the abdominal wall, thigh, or upper arm. Abdominal wall ensures a faster absorption than other sites. Personal expeience is that it causes bruises in the stomach. Imporatnt to hit a different spot each time.
Use a U-100 insulin syringe = divide the units of U-500 by 5
So 50 units of U-500 is number 10 (units) on a U-100 insulin syringe.
If you use a tuberculin syringe (volume in mL, use a chart provided
Example. 50 units of Humulin R U-500 dose (units) would be 0.1 on a tuberculin syringe
75units would be 0.15
100 units would be 0.2
U-500 Insulin
Most insulin products are supplied from the manufacturer in a 100 unit/mL concentration. The insulin is then administered using an insulin syringe specially designed for use with this concentration of insulin. When a patient needs a dose of 40 units, a caregiver draws the insulin to the designated 40-unit marking on the insulin syringe. However, there is a more concentrated form of insulin that comes as a 500 unit/mL concentration.
The use of U-500 insulin has been increasing due to factors including an escalating obesity epidemic, increasing insulin resistance, growing use of insulin pumps, and rising usage of high doses for tight glucose control. However, there are no insulin syringes designed to measure doses of U-500 insulin (in the US) ; therefore, healthcare practitioners are forced to prescribe, dispense, and administer U-500 insulin using insulin syringes designed for 100 units/mL insulin or other syringes marked in mL. For example, a patient using U-500 insulin with a U-100 syringe might state his dose as “40 units” because he is reading 40 units on the U-100 syringe he used to administer the insulin. However, he is actually administering 200 units of insulin because of the higher concentration. This increases the risk that a fivefold dosing error will occur when the patient communicates his dose to a healthcare practitioner.
The prescribed dose of Humulin R U-500 should always be expressed in actual units of
Humulin R U-500 along with corresponding markings on the syringe the patient is using (i.e., a U-100 insulin syringe or tuberculin syringe
My husband's pre-surgery dose of 32 units of RU 500 would be 160 units of RU 100. (32 x 5 = 160)
Hospital gave hubby 16 units of novulog. They converted 32 straight across and cut it in half because he was NPO. Thus, he received 10% of what he should have received. No wonder his glucose shot to 400 the next morning! This is a common/typical mistake made by hospital staff.
Good information
To switch from regular to concentrated:
The total daily dose of U-100 insulin is added up, and then diided by 5 to indicate the U-500 insulin requirement. Then reduce the U-500 requirement by 10 – 20% and divide the remainder throughout the day. 60% pre breakfast, 40% pre dinner.
So, to switch from concentrated to regular:
Add the total amount of U-500 given per day, then increase by 10 – 20% ,then multiply by 5. This will give you the total amount of U-100 insulin needed.
I can't begin to do the math going backwards!!!
People have asked why hubby is not on metforim. You can't take it if you have renal impairment. My understanding is that if the kidneys are functioning less than 50%, then you are considered to have renal impairment.
The vial of U-500 insulin looks almost identical to a vial of U-100 insulin. The word "concentrated" is in small type and you actually have to hunt to find it.
U-500 is usually not available in hospital pharmacies, so patient must take their own with them to the hospital. Upon admission to a hospital, ask to have their endocrinology staff brought on board immediately. Patient’s chart should clearly indidcate that the patient isusing U-500 insulin.
In hubby's situation, I said he was taking Humulin R-U 500 concentrated. The Pharm D STUDENT who admitted him wrote down Humulin Regular which everyone then interpreted to be Humulin R -U 100.
In some situations, patients need to be fasting and hence intra-venous insulin is required. Insulin resistance is increased in acute ill-nesses and thus insulin requirements can be greater. It is crucial that the ward nursing staff/pharmacist clearly identify, label, store, dispense and inject the U-500 insulin separately from U-100 insulin. These patients may need a steep sliding scale at higher blood glucose levels.
another article
hospital errors
Syringes:
there are 2 kinds of insulin syringes. We have literally been to hospitals that do not stock insulin syringes! ICU at this last hospital did not have insulin syringes available. They did manage to get some from another floor. ICU without insulin syringes?????
1/2ML – u100
1 ML – u100
1 ml of insulin fluid has 100 standard “units” of insulin.
1cc (1ml) syringe holds a maximum of 100 units,numbered in 10 unit increments. The smallest line is 2 units. The smallest measure is 1 unit
1/2cc (0.5 ml) or ½ ml syringe holds a maximum of 50 units, numbered in 10 unit increments, the smallest measureis 1 unit.
U-100 insulin syringes have shorter needles, finer gauge needles for less pain. You want these!!!
Standard hypodermic syrines measure in cc and have larger gauge needles which will cause more pain.
good article on this
14 units on the ½ ML syringe is actually (14x5) 70 units of U-500 because you convert the dose of U-500 to U-100 volume equivalents in order to use the U-100 insulin syringe.
Ah! See where the staff's confusion comes in? They don't want to convert anything!!!
A standard tuberculin syringe measures volume in milliliters. But they do not come in 30 ga needles. Tuberculin gauges are 26 or 27 – bigger than insulin needles. (the larger the number, the smaller the size when it comes to gauges).
The Rx should be written as:
Insulin dose is 70 units, using U-500 insulin. This is equal to 14 units (.14ml) when measured in a U-100 insulin syringe.
Because U-500 is pretty rare, hospital staff is not trained in it's use. Therefore, spouses have to be the ones who are educated in the event that the diaetic can't communicate (how sad is that?) Spouses HAVE to be vigilant and check each does that is administered because each change of staff brings on a "new" nurse that has not bee educated. Doctors and nurses all want to switch from U-500 to U-100, but because the reverse formula is so difficult (adding back in the 10% reduction, giving consideration to changes in weight, etc) and because the patient will now need 5 times the "volume" of insulin (going from 25 units of U-500 to 125 units of U-100), and the timing of injections because U-500 is both fast acting and long acting).....it really does create a nightmare for the patient. Unless hospital staff are willing to test every 2 hours and adjust H and N types of insulin for the patients needs, it's just not going to work. And considering that my husband would go up to 6 hours without anyone checking anything...it would have been disastrous!!!
Needless to say, just the original PharmD student misunderstanding what I clearly said to him was a big enough disaster going into the first operation.
Insulin usage/doseage in hospitals is simply something that spouses are going to have to remain aggressive about. I don't see any medical staff understanding or wanting to understand U-500 and I have a feeling from what I've read online that most don't understand the regular, normal stuff
Here's hoping my research helps someone else. Feel free to print it out and hand it to the surgeon and the hospital pharmacy. They might as well love you as much as they loved me! :o)
DW
Good article:
Click here
Humulin R U-500 concentrated is a form of Human insulin which is 500 units/ml and is 5 times more concentrated than Humulin R U-100 aka Humulin Regular or Regular Humulin. This is my starting base as this is what hubby takes.
BUT.....R U-500 is also called Regular Humulin (see the "R"?)
There is also Humulin R U-100 which is called Regular Humulin. Ahhh....see the confusion starting already???
U-500 (which is what I've decided to call the concentrated type) takes effect w/i 30 minutes (fast acting)
but it is also long-acting as it will last up to up to 24 hours duration
Note: If you take it at 7:00 am (breakfast) and 5 pm (dinner) there is a build-up, a half-life to the amount you take.
It is used in both type 1 and type 2 diabetes
It is useful for the treatment of insulin-resistant patients
It is used in diabetics who need a lot of insulin.
usually given 2 or 3 times daily before meals. Should be followed by a meal within 30 minutes of administration
may be administered in the abdominal wall, thigh, or upper arm. Abdominal wall ensures a faster absorption than other sites. Personal expeience is that it causes bruises in the stomach. Imporatnt to hit a different spot each time.
Use a U-100 insulin syringe = divide the units of U-500 by 5
So 50 units of U-500 is number 10 (units) on a U-100 insulin syringe.
If you use a tuberculin syringe (volume in mL, use a chart provided
Example. 50 units of Humulin R U-500 dose (units) would be 0.1 on a tuberculin syringe
75units would be 0.15
100 units would be 0.2
U-500 Insulin
Most insulin products are supplied from the manufacturer in a 100 unit/mL concentration. The insulin is then administered using an insulin syringe specially designed for use with this concentration of insulin. When a patient needs a dose of 40 units, a caregiver draws the insulin to the designated 40-unit marking on the insulin syringe. However, there is a more concentrated form of insulin that comes as a 500 unit/mL concentration.
The use of U-500 insulin has been increasing due to factors including an escalating obesity epidemic, increasing insulin resistance, growing use of insulin pumps, and rising usage of high doses for tight glucose control. However, there are no insulin syringes designed to measure doses of U-500 insulin (in the US) ; therefore, healthcare practitioners are forced to prescribe, dispense, and administer U-500 insulin using insulin syringes designed for 100 units/mL insulin or other syringes marked in mL. For example, a patient using U-500 insulin with a U-100 syringe might state his dose as “40 units” because he is reading 40 units on the U-100 syringe he used to administer the insulin. However, he is actually administering 200 units of insulin because of the higher concentration. This increases the risk that a fivefold dosing error will occur when the patient communicates his dose to a healthcare practitioner.
The prescribed dose of Humulin R U-500 should always be expressed in actual units of
Humulin R U-500 along with corresponding markings on the syringe the patient is using (i.e., a U-100 insulin syringe or tuberculin syringe
My husband's pre-surgery dose of 32 units of RU 500 would be 160 units of RU 100. (32 x 5 = 160)
Hospital gave hubby 16 units of novulog. They converted 32 straight across and cut it in half because he was NPO. Thus, he received 10% of what he should have received. No wonder his glucose shot to 400 the next morning! This is a common/typical mistake made by hospital staff.
Good information
To switch from regular to concentrated:
The total daily dose of U-100 insulin is added up, and then diided by 5 to indicate the U-500 insulin requirement. Then reduce the U-500 requirement by 10 – 20% and divide the remainder throughout the day. 60% pre breakfast, 40% pre dinner.
So, to switch from concentrated to regular:
Add the total amount of U-500 given per day, then increase by 10 – 20% ,then multiply by 5. This will give you the total amount of U-100 insulin needed.
I can't begin to do the math going backwards!!!
People have asked why hubby is not on metforim. You can't take it if you have renal impairment. My understanding is that if the kidneys are functioning less than 50%, then you are considered to have renal impairment.
The vial of U-500 insulin looks almost identical to a vial of U-100 insulin. The word "concentrated" is in small type and you actually have to hunt to find it.
U-500 is usually not available in hospital pharmacies, so patient must take their own with them to the hospital. Upon admission to a hospital, ask to have their endocrinology staff brought on board immediately. Patient’s chart should clearly indidcate that the patient isusing U-500 insulin.
In hubby's situation, I said he was taking Humulin R-U 500 concentrated. The Pharm D STUDENT who admitted him wrote down Humulin Regular which everyone then interpreted to be Humulin R -U 100.
In some situations, patients need to be fasting and hence intra-venous insulin is required. Insulin resistance is increased in acute ill-nesses and thus insulin requirements can be greater. It is crucial that the ward nursing staff/pharmacist clearly identify, label, store, dispense and inject the U-500 insulin separately from U-100 insulin. These patients may need a steep sliding scale at higher blood glucose levels.
another article
hospital errors
Syringes:
there are 2 kinds of insulin syringes. We have literally been to hospitals that do not stock insulin syringes! ICU at this last hospital did not have insulin syringes available. They did manage to get some from another floor. ICU without insulin syringes?????
1/2ML – u100
1 ML – u100
1 ml of insulin fluid has 100 standard “units” of insulin.
1cc (1ml) syringe holds a maximum of 100 units,numbered in 10 unit increments. The smallest line is 2 units. The smallest measure is 1 unit
1/2cc (0.5 ml) or ½ ml syringe holds a maximum of 50 units, numbered in 10 unit increments, the smallest measureis 1 unit.
U-100 insulin syringes have shorter needles, finer gauge needles for less pain. You want these!!!
Standard hypodermic syrines measure in cc and have larger gauge needles which will cause more pain.
good article on this
14 units on the ½ ML syringe is actually (14x5) 70 units of U-500 because you convert the dose of U-500 to U-100 volume equivalents in order to use the U-100 insulin syringe.
Ah! See where the staff's confusion comes in? They don't want to convert anything!!!
A standard tuberculin syringe measures volume in milliliters. But they do not come in 30 ga needles. Tuberculin gauges are 26 or 27 – bigger than insulin needles. (the larger the number, the smaller the size when it comes to gauges).
The Rx should be written as:
Insulin dose is 70 units, using U-500 insulin. This is equal to 14 units (.14ml) when measured in a U-100 insulin syringe.
Because U-500 is pretty rare, hospital staff is not trained in it's use. Therefore, spouses have to be the ones who are educated in the event that the diaetic can't communicate (how sad is that?) Spouses HAVE to be vigilant and check each does that is administered because each change of staff brings on a "new" nurse that has not bee educated. Doctors and nurses all want to switch from U-500 to U-100, but because the reverse formula is so difficult (adding back in the 10% reduction, giving consideration to changes in weight, etc) and because the patient will now need 5 times the "volume" of insulin (going from 25 units of U-500 to 125 units of U-100), and the timing of injections because U-500 is both fast acting and long acting).....it really does create a nightmare for the patient. Unless hospital staff are willing to test every 2 hours and adjust H and N types of insulin for the patients needs, it's just not going to work. And considering that my husband would go up to 6 hours without anyone checking anything...it would have been disastrous!!!
Needless to say, just the original PharmD student misunderstanding what I clearly said to him was a big enough disaster going into the first operation.
Insulin usage/doseage in hospitals is simply something that spouses are going to have to remain aggressive about. I don't see any medical staff understanding or wanting to understand U-500 and I have a feeling from what I've read online that most don't understand the regular, normal stuff
Here's hoping my research helps someone else. Feel free to print it out and hand it to the surgeon and the hospital pharmacy. They might as well love you as much as they loved me! :o)
DW
Sunday, April 03, 2011
comments on comments.......
Comments from "Too tired"
But first, why repost comments?
Because it's just not so easy to go backwards in these blogs and see what others wrote - and I think it's important to give validity to their comments. :o)
Lilly wrote:
As you and I have said before, if we could get all the doctors that our hubbies see in one room together, it would be so much easier. I wonder if they could come to any type of agreements then? I really wish this could be done, because we as spouses end up trying to take it all on with the disagreements about meds, etc., and (you are right!) it is totally exhausting. The depression and feeling useless is something that my husband faces every day as well. He was basically forced into medical/disability retirement at the age of 40, so he has had a lot of time on his hands feeling useless, as almost all of his friends are still working. Most of the time, I don't have the energy to deal with it either, as I feel like I am picking up the pieces on everything else. Hang in there. I KNOW none of this is easy! Lilly
After hubby's most recent hospitalization, and all the follow up visits, I have come to the conclusion that nephrologists think they are gods. And possibly with some justification. After all, if the kidneys stop functioning there isn't much left. Nephrologists stopped his medicines (4 of them) without talking to us about it. Hmmm.....making life altering choices without discussing them with the patient or the patient's family? must think of themselves as gods. That's the only explanation I can come up.
So if we put all the specialist into a single room - the nephrologist would take over the meeting, try to control everyone else, make all the decisions and determine what's next. And that is exactly what happened at the hospital.
I personally would prefer to defer to the cardiologist. From what I have seen, they are more concerned about the whole person. Yes, their speciality is he heart....but they also seem to know more of what the entire body needs.
Hubby's nephrologist wants him off his atenolol.....which the cardiologist said to never stop, no matter what. That was written in his hospital chart, yet the hospital nephrologist stopped it.
Think there's a "power play" going on there? LOL!!!
Newtothis:
I'm sorry DW. I hate specialist. I hate them with a passion. I voice this from personal experience of dealing with them for my own health issues. They will NOT look at the whole person and don't care what any other specialist says or does. At most they give seven minutes of their time and with hand on door-knob ask if there is anything else. I think someone can "wish yourself to death". Having the will to live is half the battle. Hopefully he can cheer up. It sounds like he (and YOU) had a truely terrible day. My prayers go out to you both. S
Hubby is still depressed. But I have been gone most of the weekend either teaching or presenting. Haven't had to deal too much with his mood.But it's no better tonight. Sigh.
Tom’s wife
f you could wish yourself to death, my 104-year-old grandmother would have died 10 years ago when my grandfather died. Instead she lies curled in a ball at a nursing home being forced to drink ensure and moved around by aides all the time. the horrible part of your situation is that the medical industry is more focused on the benefit to the "stockholders" and the managers and less on the care of the patients! From a distance, we can let some of these young care-givers off of the hook a little, they are limited by the training and rules they are given and must follow. But often one wonders about their compassion. I guess that is no longer a necessary trait of a person in the profession. Its ok that you are not the cheerleader for a day or two. If he is depressed -- well, then he is. This is not uncommon and another condition that (in my humble opinion) he also needs to address. You and I know that in all probability I will do exactly the same things you are doing to care for my Tom when he is in the same condition as your hubby -- so my words must be taken with a grain of salt. However, what I want for you is to give him back some of the control and responsibility and "force" him to stand up for himself and throw your documentation into the face of his doctors and tell them himself that he needs help. even if some of that help is medication for his depression. enough said, you know this, and it is so much easier said than done -- especially from the anonymity of the blog-world good luck -- know my heart is with you. and I hope Monday (work) brings good news. Tom's Wife
I guess I think that if you are ready to die spiritually, if you are really ready to let go of life, then one can wish themselves dead. I am a genealogist and I have seen so many cases where one spouse died within a few days of losing the first spouse. And they were healthy. They just wished themselves to death. But I also think we can never really know another person's soul. Are they clinging to life because on some level they are not ready to go? My father was not supposed to make it home from the hospital to hospice care yet he lived 2 more weeks waiting for his brothers to arrive from out of state to say goodbye to him. I mean, this guy had a zero percent chance to live 1 hour after they unhooked the heart/lung machine against medical advice. He had an 8% heart/lung capacity, no kidney function....yet he lived 2 more weeks. Just amazing.
But first, why repost comments?
Because it's just not so easy to go backwards in these blogs and see what others wrote - and I think it's important to give validity to their comments. :o)
Lilly wrote:
As you and I have said before, if we could get all the doctors that our hubbies see in one room together, it would be so much easier. I wonder if they could come to any type of agreements then? I really wish this could be done, because we as spouses end up trying to take it all on with the disagreements about meds, etc., and (you are right!) it is totally exhausting. The depression and feeling useless is something that my husband faces every day as well. He was basically forced into medical/disability retirement at the age of 40, so he has had a lot of time on his hands feeling useless, as almost all of his friends are still working. Most of the time, I don't have the energy to deal with it either, as I feel like I am picking up the pieces on everything else. Hang in there. I KNOW none of this is easy! Lilly
After hubby's most recent hospitalization, and all the follow up visits, I have come to the conclusion that nephrologists think they are gods. And possibly with some justification. After all, if the kidneys stop functioning there isn't much left. Nephrologists stopped his medicines (4 of them) without talking to us about it. Hmmm.....making life altering choices without discussing them with the patient or the patient's family? must think of themselves as gods. That's the only explanation I can come up.
So if we put all the specialist into a single room - the nephrologist would take over the meeting, try to control everyone else, make all the decisions and determine what's next. And that is exactly what happened at the hospital.
I personally would prefer to defer to the cardiologist. From what I have seen, they are more concerned about the whole person. Yes, their speciality is he heart....but they also seem to know more of what the entire body needs.
Hubby's nephrologist wants him off his atenolol.....which the cardiologist said to never stop, no matter what. That was written in his hospital chart, yet the hospital nephrologist stopped it.
Think there's a "power play" going on there? LOL!!!
Newtothis:
I'm sorry DW. I hate specialist. I hate them with a passion. I voice this from personal experience of dealing with them for my own health issues. They will NOT look at the whole person and don't care what any other specialist says or does. At most they give seven minutes of their time and with hand on door-knob ask if there is anything else. I think someone can "wish yourself to death". Having the will to live is half the battle. Hopefully he can cheer up. It sounds like he (and YOU) had a truely terrible day. My prayers go out to you both. S
Hubby is still depressed. But I have been gone most of the weekend either teaching or presenting. Haven't had to deal too much with his mood.But it's no better tonight. Sigh.
Tom’s wife
f you could wish yourself to death, my 104-year-old grandmother would have died 10 years ago when my grandfather died. Instead she lies curled in a ball at a nursing home being forced to drink ensure and moved around by aides all the time. the horrible part of your situation is that the medical industry is more focused on the benefit to the "stockholders" and the managers and less on the care of the patients! From a distance, we can let some of these young care-givers off of the hook a little, they are limited by the training and rules they are given and must follow. But often one wonders about their compassion. I guess that is no longer a necessary trait of a person in the profession. Its ok that you are not the cheerleader for a day or two. If he is depressed -- well, then he is. This is not uncommon and another condition that (in my humble opinion) he also needs to address. You and I know that in all probability I will do exactly the same things you are doing to care for my Tom when he is in the same condition as your hubby -- so my words must be taken with a grain of salt. However, what I want for you is to give him back some of the control and responsibility and "force" him to stand up for himself and throw your documentation into the face of his doctors and tell them himself that he needs help. even if some of that help is medication for his depression. enough said, you know this, and it is so much easier said than done -- especially from the anonymity of the blog-world good luck -- know my heart is with you. and I hope Monday (work) brings good news. Tom's Wife
I guess I think that if you are ready to die spiritually, if you are really ready to let go of life, then one can wish themselves dead. I am a genealogist and I have seen so many cases where one spouse died within a few days of losing the first spouse. And they were healthy. They just wished themselves to death. But I also think we can never really know another person's soul. Are they clinging to life because on some level they are not ready to go? My father was not supposed to make it home from the hospital to hospice care yet he lived 2 more weeks waiting for his brothers to arrive from out of state to say goodbye to him. I mean, this guy had a zero percent chance to live 1 hour after they unhooked the heart/lung machine against medical advice. He had an 8% heart/lung capacity, no kidney function....yet he lived 2 more weeks. Just amazing.
Friday, April 01, 2011
So tired.
We went to nephrology today. Another young, idiot doctor. He said, yes, hubby is anemic, but his numbers are going in the right direction, so he did not want to do anything.
He wants hubby to stop the atenolol.
Heart doc told us to NEVER stop the atenolol....not for any reason. I told the nephrologist that we would defer to the cardiologist.
I will also ask her about his anemia. Seriously...lack of oxygen getting to the brain and this idiot doesn't want to do anything?
Worthless human being if you ask me. Yes, I'm mad!!
He told hubby to start taking vitamin d again. Hubby's personal physician told him to stop taking it.
Can no one look at the whole???
So hubby is horribly depressed tonight. On top of getting no help with his anemia and sleeping 4-8 hours during the day plus at night...
His boss took some of his employees and reassigned them to other groups today while hubby was out on sick leave. The staff started calling him thinking it was an April fools joke and he had to tell them that he didn't think it was...but his boss didn't want to talk to him until Monday.
So I have a guy who is beyond depressed tonight...moping around, telling me how worthless he is and I do not have the physical energy to be his cheerleader.
I wonder if you can wish yourself to death. If you can, I think he is there.
He has almost quit eating. He doesn't want anything. He has no appetite. Losing weight right now is taking him in the wrong direction. He is already suffering from muscle loss.
Not been a good day at all. Days like this just exaust me.
He wants hubby to stop the atenolol.
Heart doc told us to NEVER stop the atenolol....not for any reason. I told the nephrologist that we would defer to the cardiologist.
I will also ask her about his anemia. Seriously...lack of oxygen getting to the brain and this idiot doesn't want to do anything?
Worthless human being if you ask me. Yes, I'm mad!!
He told hubby to start taking vitamin d again. Hubby's personal physician told him to stop taking it.
Can no one look at the whole???
So hubby is horribly depressed tonight. On top of getting no help with his anemia and sleeping 4-8 hours during the day plus at night...
His boss took some of his employees and reassigned them to other groups today while hubby was out on sick leave. The staff started calling him thinking it was an April fools joke and he had to tell them that he didn't think it was...but his boss didn't want to talk to him until Monday.
So I have a guy who is beyond depressed tonight...moping around, telling me how worthless he is and I do not have the physical energy to be his cheerleader.
I wonder if you can wish yourself to death. If you can, I think he is there.
He has almost quit eating. He doesn't want anything. He has no appetite. Losing weight right now is taking him in the wrong direction. He is already suffering from muscle loss.
Not been a good day at all. Days like this just exaust me.
Wednesday, March 30, 2011
Lilly - some days I'm just "bad"! LOL!!!
Lilly wrote
Wow. Sorry, but I have to question your husband's Type 2 diagnosis. Unless maybe when he was first diagnosed, his body still made some insulin? My husband was 23 when diagnosed, and was diagnosed from the start as a Type 1, as he made no insulin at all, and got very sick. What we were told is if your pancreas just stops making any insulin, you are automatically a Type 1, even if you are in your early 20's. On the other hand, Type 2s do make some insulin, but it either is not enough, or else they have insulin resistance, and don't use it efficiently. And yes, Type 2s can get worse and quite often have to eventually inject insulin. This is what we have always understood to be true. Am I missing something here? If I am, please tell me! As for the spouse being a "Type 3 diabetic," I was a bit put off by that, too! As far as I know, there is only Type 1 and Type 2. Sounds like the other terms are being tossed around pretty loosely.
Oh Lilly, I'm so sorry to have confused you! No, hubby DID produce insulin when he was first diagnosed. He's one of those type 2s that's had it sooooooo long - he's now quit producing insluin. According to his nephrologist. So much insulin resistance that's why he's on humulin ru 500 concentrated - 5 times the strength of regular insulin. We figured out when he was in the hospital that he would need maybe 18 injections a day if he were still taking the regular type insulin. He just needs a lot. And while he dropped from 32/20 units pre surgery (yep, that's 52 units per day of the concentrated insulin, so take 52 x 5 (converting it correctly is nearly impossible to do).....he was down to 18/12, but sadly, that is creeping back up the scale as he takes in more food. Right now he's back up to 24/18. That's 24 units in the morning and 18 units at night. Yes, there are "special" needles for this that read units rather than ccs. So it's even harder to convert. Remember I said I had argued with 3 different physicians in the hospital as they all wanted to take him from 32 units of the concentrated stuff to 32 units of regular insulin, then half that because he was without food. I'm telling you - they are all idiots!!!
New to this wrote:
I've sat back a while reflecting on this post. It's still painful for me to think about that night. The catatonic night I found you had addressed my comments. I can’t think of a way to describe how I felt that doesn’t come off sounding like a tired old cliché. You had been through so much with your DH at the hospital. Yet, you gave your time to help the stranger from the other side of the words on your computer screen. Then I saw the list of the Missing; all the other strangers behind the words on your screen. Contemplating the whys of their silence is deafening. Staying anonymous keeps us safe, makes us brave and gives us courage to be open and honest. But, I hadn’t thought to what happens when the voices go silent. It makes me think of the faded posters I’ve seen of loved ones lost. It makes me think of the high price you pay for the kindness of your heart. Oh DW, you make me think a lot. S
First - notice, I do come and go. There are moments when I can't help others. But I do try. There are times when my personal life just overwhelms me and I either don'thave the time to check this blog.....or I don't have the emotional energy to do so. But there are other times when I "need" to read what everyone else is writing. I need to be in a support group. I need to get hugged. I'm pretty sure we all go through those phases. I'm going to just guess that based on the statistics I gave in an earlier blog - most of the silent women simply left their spouses. And when they did, most likely, they had to get a new email address, maybe a new computer. Maybe they lost the link to my blog....I just want to think that they are happier now, that they have found a new life and that they are out there smiling!
And then she wrote:
I love how you stand up for yourself -the spouse. Yesterday I read your "Type 3 Diabetes" post. It got me thinking. I came back today re-read it and followed a few of the links. I laughed so hard I almost shot coffee out my nose when I was reading in -interesting article- "These are normal couples struggling with abnormal situations," Fisher says. "It is not that they are crazy or sick: It is a new situation. It is a husband, a wife, and diabetes -- a threesome -- and diabetes is often the elephant in the living room that never gets mentioned." (Either I don't have an original thought in my head or thoughts about being married to a diabetic are universal.) Being new to this I feel like I have so much to learn to help the man I adore. Then I wonder if I'm just so afraid of the monster I want to do what ever I can to keep it away. Then I wonder if I'll stay sane. Then I come back to the grounding voice of experience. Thank you DW. I'm with you. When I married DH I took his last name. However, I get perturbed when I am addressed or introduced as Mrs.(his first name)(his last name). I want to inform these people that, "I have a name and I've gone by it my whole life, if you have forgotten my name I will happily remind you." But,I don't. ...Sometimes I am able to use my filter and not blurt. So again DW, I'm with you. I do not want to be diagnosed or addressed as a Type 3 Diabetic, it's his disease and he can keep its title all to himself. Love, S
Well......it's good that we can see the humor in what other's have to say. I especially wonder about writers who are "educated" yet have never lived the experience. I always wondered about a therpist who is trying to help me through an event that never lived the event. I know they have been trained to say, "there are certain steps that we all have to go through in any process...." It's about that moment that I tell myself, "just make it through this meeting, you do not ever have to return." And usually, I don't go back.
While it is true that there are certain steps we all go through....we all go through them differently. And a therapist who has never been faced by a spouse that has just slipped off his chair and slid down to the floor because he's gone into a diabetic coma.....well, they can hardly give me advice on how to handle my emotions in that moment. LOL!!!
It took me years to understand that. I take what I can from a counselor and do what I can with it. But sometimes, it's just not enough.
Here'sa question for all of us. Are we "normal" couples dealing with "abnormal" situations? If my statistics are correct, then diabetes is not "abnormal". Perhaps the fact that our spouses don't handle it very well, maybe that's "abnormal".....but based on the divorce rate, I really doubt that!
I just don't feel like we are a "normal" couple anymore. OK, when we got married, we were. But then he went on insulin. And he decided not to manage his diabetes. But now he is doing a pretty good job of managing it. But with all the other complications....we don't have sex. Is that normal? We don't go to the movies and that used to be a weekly thing we did. We don't go out to eat and we used to do that almost every day. We still love each other very much, but we have given up so much to accomodate his disease. And yes, I do go to the movies with my girlfriends, and I go out to lunch with them. But as a couple.....he and I are a far cry from "normal" and it is due to diabetes and all of it's complications after his body has lived with this disease for 33 years. Still....it's good to laugh at what others write about our lives.
Lynn wrote:
AMEN...you are preaching to the choir! That is exactly what made me make him order and fill his pill containers...sure I will ask him if he took his meds...keep insulin in my purse and extra needles when we got out to eat but he has to own it and he finally did but i did get the guilty looks (from one of my sons and some women) like i was abandoning a child or something...I was motivated because i knew on all levels that if i had the disease i would be ordering and filling and managing MY diabetes myself....period. So if i can do for myself, he can too. Helpmate, not indentured servant. YEAH, SISTER! HUGS
It did take "this" choir member quite some time to do what you have done. But I will say I'm on a good path now. Until this last round of problems, I would even go to the clinic and pick up his Rx for him. No more. He is now on the mail order refill plan. They get squished into our mail box. Literally. His refills come in a package so huge that most days, the poor mail man has to bring them to the door. But I no longer drive 5 miles to the clinic, stand in a line forever to get to the counter, then go sit and wait til his name goes on the board, then go stand in an even longer line to pay. Thank goodness I found the strength to put my foot down on that one!!!!
Tom’s wife wrote
YAY! what a great response! first of all, I hate labels in general but especially those that put us into a box that is stupid you are so correct, we don't have the disease and we are not required to address the medications. when we do -- we do so out of love, not out of necessity. the diabetic does that. its his disease, he has to deal with it.
Here's the problem. There are so many diabetics out there blogging away, telling us how much they rely on their spouses to do so much for them. And they get so angry at me when I tell the spouses that you do have the right to say no. You have the right to walk away. You have the right to leave. You are not a diabetic. They just seem to think that this is a "couple's" disease! And I have been arguing that point for 5 years now - to the point that other bloggers continue to put me down when they write about me. Problem is, they are all diabetics who just can't equate to what our lives are like.
Bottom line. I'm pretty healthy for my age. Don't take any prescription drugs. Never have. Do not have any illnesses, ailments or diseases. Why on earth would I want anyone to classify me as a type 3 diabetic? Yikes!!!
On the other hand, if it would qualify me to get social security disability benefits, mabye I could tolerate the label.....what do you think? LOLOL!!!
DW- who occassionally has a sense of humor about most of this!
Wow. Sorry, but I have to question your husband's Type 2 diagnosis. Unless maybe when he was first diagnosed, his body still made some insulin? My husband was 23 when diagnosed, and was diagnosed from the start as a Type 1, as he made no insulin at all, and got very sick. What we were told is if your pancreas just stops making any insulin, you are automatically a Type 1, even if you are in your early 20's. On the other hand, Type 2s do make some insulin, but it either is not enough, or else they have insulin resistance, and don't use it efficiently. And yes, Type 2s can get worse and quite often have to eventually inject insulin. This is what we have always understood to be true. Am I missing something here? If I am, please tell me! As for the spouse being a "Type 3 diabetic," I was a bit put off by that, too! As far as I know, there is only Type 1 and Type 2. Sounds like the other terms are being tossed around pretty loosely.
Oh Lilly, I'm so sorry to have confused you! No, hubby DID produce insulin when he was first diagnosed. He's one of those type 2s that's had it sooooooo long - he's now quit producing insluin. According to his nephrologist. So much insulin resistance that's why he's on humulin ru 500 concentrated - 5 times the strength of regular insulin. We figured out when he was in the hospital that he would need maybe 18 injections a day if he were still taking the regular type insulin. He just needs a lot. And while he dropped from 32/20 units pre surgery (yep, that's 52 units per day of the concentrated insulin, so take 52 x 5 (converting it correctly is nearly impossible to do).....he was down to 18/12, but sadly, that is creeping back up the scale as he takes in more food. Right now he's back up to 24/18. That's 24 units in the morning and 18 units at night. Yes, there are "special" needles for this that read units rather than ccs. So it's even harder to convert. Remember I said I had argued with 3 different physicians in the hospital as they all wanted to take him from 32 units of the concentrated stuff to 32 units of regular insulin, then half that because he was without food. I'm telling you - they are all idiots!!!
New to this wrote:
I've sat back a while reflecting on this post. It's still painful for me to think about that night. The catatonic night I found you had addressed my comments. I can’t think of a way to describe how I felt that doesn’t come off sounding like a tired old cliché. You had been through so much with your DH at the hospital. Yet, you gave your time to help the stranger from the other side of the words on your computer screen. Then I saw the list of the Missing; all the other strangers behind the words on your screen. Contemplating the whys of their silence is deafening. Staying anonymous keeps us safe, makes us brave and gives us courage to be open and honest. But, I hadn’t thought to what happens when the voices go silent. It makes me think of the faded posters I’ve seen of loved ones lost. It makes me think of the high price you pay for the kindness of your heart. Oh DW, you make me think a lot. S
First - notice, I do come and go. There are moments when I can't help others. But I do try. There are times when my personal life just overwhelms me and I either don'thave the time to check this blog.....or I don't have the emotional energy to do so. But there are other times when I "need" to read what everyone else is writing. I need to be in a support group. I need to get hugged. I'm pretty sure we all go through those phases. I'm going to just guess that based on the statistics I gave in an earlier blog - most of the silent women simply left their spouses. And when they did, most likely, they had to get a new email address, maybe a new computer. Maybe they lost the link to my blog....I just want to think that they are happier now, that they have found a new life and that they are out there smiling!
And then she wrote:
I love how you stand up for yourself -the spouse. Yesterday I read your "Type 3 Diabetes" post. It got me thinking. I came back today re-read it and followed a few of the links. I laughed so hard I almost shot coffee out my nose when I was reading in -interesting article- "These are normal couples struggling with abnormal situations," Fisher says. "It is not that they are crazy or sick: It is a new situation. It is a husband, a wife, and diabetes -- a threesome -- and diabetes is often the elephant in the living room that never gets mentioned." (Either I don't have an original thought in my head or thoughts about being married to a diabetic are universal.) Being new to this I feel like I have so much to learn to help the man I adore. Then I wonder if I'm just so afraid of the monster I want to do what ever I can to keep it away. Then I wonder if I'll stay sane. Then I come back to the grounding voice of experience. Thank you DW. I'm with you. When I married DH I took his last name. However, I get perturbed when I am addressed or introduced as Mrs.(his first name)(his last name). I want to inform these people that, "I have a name and I've gone by it my whole life, if you have forgotten my name I will happily remind you." But,I don't. ...Sometimes I am able to use my filter and not blurt. So again DW, I'm with you. I do not want to be diagnosed or addressed as a Type 3 Diabetic, it's his disease and he can keep its title all to himself. Love, S
Well......it's good that we can see the humor in what other's have to say. I especially wonder about writers who are "educated" yet have never lived the experience. I always wondered about a therpist who is trying to help me through an event that never lived the event. I know they have been trained to say, "there are certain steps that we all have to go through in any process...." It's about that moment that I tell myself, "just make it through this meeting, you do not ever have to return." And usually, I don't go back.
While it is true that there are certain steps we all go through....we all go through them differently. And a therapist who has never been faced by a spouse that has just slipped off his chair and slid down to the floor because he's gone into a diabetic coma.....well, they can hardly give me advice on how to handle my emotions in that moment. LOL!!!
It took me years to understand that. I take what I can from a counselor and do what I can with it. But sometimes, it's just not enough.
Here'sa question for all of us. Are we "normal" couples dealing with "abnormal" situations? If my statistics are correct, then diabetes is not "abnormal". Perhaps the fact that our spouses don't handle it very well, maybe that's "abnormal".....but based on the divorce rate, I really doubt that!
I just don't feel like we are a "normal" couple anymore. OK, when we got married, we were. But then he went on insulin. And he decided not to manage his diabetes. But now he is doing a pretty good job of managing it. But with all the other complications....we don't have sex. Is that normal? We don't go to the movies and that used to be a weekly thing we did. We don't go out to eat and we used to do that almost every day. We still love each other very much, but we have given up so much to accomodate his disease. And yes, I do go to the movies with my girlfriends, and I go out to lunch with them. But as a couple.....he and I are a far cry from "normal" and it is due to diabetes and all of it's complications after his body has lived with this disease for 33 years. Still....it's good to laugh at what others write about our lives.
Lynn wrote:
AMEN...you are preaching to the choir! That is exactly what made me make him order and fill his pill containers...sure I will ask him if he took his meds...keep insulin in my purse and extra needles when we got out to eat but he has to own it and he finally did but i did get the guilty looks (from one of my sons and some women) like i was abandoning a child or something...I was motivated because i knew on all levels that if i had the disease i would be ordering and filling and managing MY diabetes myself....period. So if i can do for myself, he can too. Helpmate, not indentured servant. YEAH, SISTER! HUGS
It did take "this" choir member quite some time to do what you have done. But I will say I'm on a good path now. Until this last round of problems, I would even go to the clinic and pick up his Rx for him. No more. He is now on the mail order refill plan. They get squished into our mail box. Literally. His refills come in a package so huge that most days, the poor mail man has to bring them to the door. But I no longer drive 5 miles to the clinic, stand in a line forever to get to the counter, then go sit and wait til his name goes on the board, then go stand in an even longer line to pay. Thank goodness I found the strength to put my foot down on that one!!!!
Tom’s wife wrote
YAY! what a great response! first of all, I hate labels in general but especially those that put us into a box that is stupid you are so correct, we don't have the disease and we are not required to address the medications. when we do -- we do so out of love, not out of necessity. the diabetic does that. its his disease, he has to deal with it.
Here's the problem. There are so many diabetics out there blogging away, telling us how much they rely on their spouses to do so much for them. And they get so angry at me when I tell the spouses that you do have the right to say no. You have the right to walk away. You have the right to leave. You are not a diabetic. They just seem to think that this is a "couple's" disease! And I have been arguing that point for 5 years now - to the point that other bloggers continue to put me down when they write about me. Problem is, they are all diabetics who just can't equate to what our lives are like.
Bottom line. I'm pretty healthy for my age. Don't take any prescription drugs. Never have. Do not have any illnesses, ailments or diseases. Why on earth would I want anyone to classify me as a type 3 diabetic? Yikes!!!
On the other hand, if it would qualify me to get social security disability benefits, mabye I could tolerate the label.....what do you think? LOLOL!!!
DW- who occassionally has a sense of humor about most of this!
Monday, March 28, 2011
Type 3 diabetes
According to ehow.com, (and several other sites) say it's when the brain stops or reduces the acceptance of insulin within the brain's cell receptors, aka brain diabetes.
According to wikipedia, it's gestational diabetes, or type 1 that is insulin-resistant, or type 2 that needs injected insulin.....
Over at naturalnews.com, they say it's a blood sugar spike when you are exposed to electrical pollution!
Type 4 diabetes is fibromyalgia? A guy even wrote a book by that title.
Type 4 diabetes
There is some talk online about type 5 which is obesity caused.
At dlife - they want you to believe that you are a type 3 diabetic if you are a spouse of a diabetic.
There's another website that claims spouses and loved ones are type 5 diabetics.
I sort of see the humor in all of this, but in reality, you either get it as a child, or as an adult. Everything else is probably a subset of those 2. But then.....when does a child become an adult?
My hubby acquired his diabetes at age 22. He has always been diagnosed as type 2. His pancreas does not produce any insulin.
But I just wanted to write about spouses and loved ones of diabetics. There are those who love the concept of being classified as type 3 (or type 5) diabetic. I get that. But on the other hand, I don't get that. I do not have diabetes. I do not have a disease. I do not require medicine, insulin, my blood sugars don't go high or low. It's really very simple - I'm not a diabetic.
Is this a means for diabetics and the diabetic community to force spouses and loved ones to be more involved? To smpathize with their plight? "I'm type one and you have it too, you are type 3?"
Is this a way for them to get us more involved? "I can't eat candy because I'm a type 2, and you shouldn't either because you are a type 3?"
I have to wonder!
I read a post on dlife about diabetes and your partner
I found an interesting article claiming that depression is high amoung spouses of diabetics. I liked the description that we are not a couple, we are a threesome - him, me and diabetes.
But no matter how you say it.....I really don't like it when anyone suggests that I "have" to participate in this disease. It is his, not mine. If I'm here when he goes low, I'm more than happy to get a glucose tablet for him. But I'm not about to sit home waiting to see if that's going to happen, so he has to learn how to find them, how to keep them in his pocket, how to test, how to recognize when he's going low. It's 100% his job. I'm just a lucky benefit...when I'm here!
It's not my job
And it's that healthy attitude that keeps me here. It is something that I have had to learn. It is something that most diabetics argue with. It's not a family disease. I'm not a type 3 diabetic. I simply happen to be married to someone who has this disease. It's his. So maybe we should start asking the diabetic, "what's more important, your health or my sanity?" I think I'd get a different answer depending on where his sugar is! LOL!
DW
According to wikipedia, it's gestational diabetes, or type 1 that is insulin-resistant, or type 2 that needs injected insulin.....
Over at naturalnews.com, they say it's a blood sugar spike when you are exposed to electrical pollution!
Type 4 diabetes is fibromyalgia? A guy even wrote a book by that title.
Type 4 diabetes
There is some talk online about type 5 which is obesity caused.
At dlife - they want you to believe that you are a type 3 diabetic if you are a spouse of a diabetic.
There's another website that claims spouses and loved ones are type 5 diabetics.
I sort of see the humor in all of this, but in reality, you either get it as a child, or as an adult. Everything else is probably a subset of those 2. But then.....when does a child become an adult?
My hubby acquired his diabetes at age 22. He has always been diagnosed as type 2. His pancreas does not produce any insulin.
But I just wanted to write about spouses and loved ones of diabetics. There are those who love the concept of being classified as type 3 (or type 5) diabetic. I get that. But on the other hand, I don't get that. I do not have diabetes. I do not have a disease. I do not require medicine, insulin, my blood sugars don't go high or low. It's really very simple - I'm not a diabetic.
Is this a means for diabetics and the diabetic community to force spouses and loved ones to be more involved? To smpathize with their plight? "I'm type one and you have it too, you are type 3?"
Is this a way for them to get us more involved? "I can't eat candy because I'm a type 2, and you shouldn't either because you are a type 3?"
I have to wonder!
I read a post on dlife about diabetes and your partner
I found an interesting article claiming that depression is high amoung spouses of diabetics. I liked the description that we are not a couple, we are a threesome - him, me and diabetes.
But no matter how you say it.....I really don't like it when anyone suggests that I "have" to participate in this disease. It is his, not mine. If I'm here when he goes low, I'm more than happy to get a glucose tablet for him. But I'm not about to sit home waiting to see if that's going to happen, so he has to learn how to find them, how to keep them in his pocket, how to test, how to recognize when he's going low. It's 100% his job. I'm just a lucky benefit...when I'm here!
It's not my job
And it's that healthy attitude that keeps me here. It is something that I have had to learn. It is something that most diabetics argue with. It's not a family disease. I'm not a type 3 diabetic. I simply happen to be married to someone who has this disease. It's his. So maybe we should start asking the diabetic, "what's more important, your health or my sanity?" I think I'd get a different answer depending on where his sugar is! LOL!
DW
Sunday, March 27, 2011
What ever happened to.....
I went back through some old comments. Over and over, I saw "I just found your blog...you saved my life...you saved my marriage....I feel like you are me....."
so many people, mostly women, would pop in, make comments for 2 or 3 months and then leave. I wonder where they are now.
Did their marriages last?
Did their diabetic husbands die?
I most miss Fran. She would write early on and often. Always such supportive comments. Last I knew she was moving and thinking about leaving him. Then blank. Nothing. Never heard a word again. Did he kill her?
We use such anonymous names to protect ourselves and our families.....that when someone stops writing...I have to wonder what happened.
There was an annonymous poster who posted all the time. Then nothing. Just gone.
And Faith. Here all the time, then gone. Did her husband die? Did it get too hard to read about what I was going through? I can only imagine. Whimsy2 was posting a lot and then nothing.
All these and more:
Jean
Robin
Whimsy2
Debbiej
Fran
Ellen
Sara
Anne
Laura
Kim
Worried Wife
Faith
JustLittleMe
Amylia
Lilly
M
Cat ofMany hats
Lyrecha
Widow of a diabetic
Christine-Megan
Mrs. B
Plumber Wife
Missionarysue
Lisa
Brenda G
Lady Marian
Pam
Mary
Neil Curtis – he hasn’t posted since last September
Andmaree
Florence
I wonder:
1. If you were diabetic, did your disease take you from us?
2. Did it get to hard, to close to home, to read what I wrote?
3. Did I make you mad because you think this is never going to happen to you?
4. Did you get all better and didn't need to read about diabetes any more?
I have a feeling it's not # 4!!! I have a feeling the wivesleft or thespouses died. I wonder if I would write about this if hubby dies. OK, WHEN hubby dies. I wonder if I will still try to reach out and support other women who are dealing with non-compliant spouses.
Although, perhaps, I need to change my description on this blog. I would have to confess that after this last surger (ok, for one whole entire month now) he has been very compliant. But he was compliant after his open heart surgery for 3 months and then that came to a schreeching hault! So I'll wait another couple months and just see what happens here.
For the most part, writing is therapy for me. But I can imagine that reading what I write has to go to the heart of some of the readers. If they are in denial, then of course, they will click off. If it's too painful, they will click off.
Lilly, do you know you made your first comment on 3/28/08? I don't know of anyone left who has followed me longer than you have!
Tom's wife - the earlies comment I can find is 7/6/09. Thank you for not leaving me alone! You were the first to create your own blog and write about your experiences in order to help others. I feel so completely connected to you....and I don't even know your name!
Lynn....your last comment:
jammie Sunday...I love that...and I am doing that too...Keep on keeping on and again, I hope you are still forging ahead with your plan to sell the house and move near your sis...that makes me happy and all I know you from is on here. HUGS
well, by keeping myself anonymous here....you probably actually KNOW me better than anyone who is part of my life outside this blog! I keep the 2 separate. But it is this place, this blog, where I can be the real me. I can talk about the hurt, pain, fear, anger. And that allows me to be a nice, polite, "christian" type wife. Otherwise, I'd be screaming my head off in public! LOL!!!
Our personal circle of friends is pretty small. Interestingly, there are no other diabetics. Hubby does not tell anyone that he has diabetes. Only in the past 2 years have I told anyone other than my sisters and brother. Our next door neighbors know because he went into a diabetic coma at their house. They now keep glucose tabs and orange juice on hand.
I have many moments when I want to open up and share who I am, where we live, what our life is. But for the moment, I do think it's better to remain the way I am. It doesn't make this any less real, but perhaps protects the privacy of my husband as long as he is working. And protects the privacy of his medical staff. Who might not appreciate some of the things I say about them. And might not be so supportive of him if they knew it was his wife out here blabbing away! LOL!!!
I started this blog on March 22, 2006. I have not made 511 posts in the last 5 years. I don't know of many diabetics, let alone their spouses, who are posting the prognosis of their disease like I am. I don't post every week, sometimes I don't post every month. But then there are times when I post twice a day. It just depends on what's going on.....and my need to write it down.
Newtothis - I am taking your advice and copying over all the blogs into a word document. Ok, several word documents! It took me 2 hours to get 2006 copied over and that year has less posts than any other year. So it's a project I will work on this week. Thanks for the advice!
To all the wonderful comments that women have made here over the years, thank you. I pray that those of you who have moved on are safe and loving life. Know that you helped me through the moment and for that, I will always be grateful.
DW
Catatonic moments.......
newtothis wrote:
Dear DW, Yes, your MBA is showing. Good for you and I am not surprised you've earned one. Isn't life such a funny set of occurrences? We never know where they will take us. However, I do enjoy meeting the ones whose paths these occurrences have cross my own. Hopefully you make and keep a hard copy of your blog. I never fully trust a computer or site to safely keep/hold information. (I've seen information disappear from the "net" as well as personal computers...but that is a different story.) You have the guts of a book here. With the statistics rising and your intimate knowledge, you have an unique insight into this horrible disease. Not just how it effects its host, but what it does to the spouse. Have you thought about this? The last thing I want is for you to stop your blog. I've just found you! Your advice for me very well may save my spirit if not my marriage. I bring this up to you because being around PhDs I hear about lots of book deals. And with your updated "diabetes statistics" how many of us are out here in the cold, alone? We need someone like you to champion our plight. ...Yes, I am being a little dramatic here, but my P-DH had a marathon 24 hour rage session on me. I was pretty much catatonic by the time it was over. Last night I looked for you and you were there. You answered my comments and helped me. There are a lot of me(s) out here and the medical community is not helping us. Just thought I would ask. Thank you for your advice. The next time he starts "raging" I plan on pouring a glass of OJ and set it on the counter, tell my boys we have somewhere to be and get us in the car and be somewhere else for a few hours. Whatever I come home to couldn't be worse than what I've put myself and children through this past weekend. Needless to say when it was over he appoligized and said I didn't do anything wrong. He then spent the night throwing-up and I have spent the day checking on him asking if he ate. Love to you, S
I had to laugh....because I woke up thinking to myself this morning, "I am so old to this!" LOL!!! And really, I'm not at all. Hubby has only had difficulties with this in the last 5 years.....and I only started going to his medical visits with him about 2 years ago when he started in with the heart problems. Prior to that....everything I've written is just my feelings. I did very little research. But I've made up for that lack in rapid speed, that's for certain.
No, no thoughts on a book. But many thoughts on some kind of speaking tour. I just think the medical staff would never sit down and read a book. Who would care? It' some statistic's wife. It's just not real. But if I could stand in front of them and have a powerpoint presentation with statistics.....show them the evidence, tell them my experience at the hospital and ask if they really want to help the patient.....
and still I think they would just look at me as the incredibly insane wife of a patient that they think would have done just fine without me. After all - he is alive. They were the staff. They "took care of him". No credit to me that I stood there and corrected their mistakes, charted their errors.....employees just do not want to hear that kind of stuff. They only want you to tell them what they did right, wonderful, terrific. Not what they messed up on!
Hospital adminstrators don't want to hear anything negative either. So here I stay, just blogging away....hoping that in some small way it gives insight to another woman who is in my shoes, struggling to get through a single moment, worrying about where the strength to get through the rest of the day is going to come from!
I loved the term "catatonic". It's exactly where I am at this moment.....and hubby hasn't been in a rage. I'm catatonic from the hospital experience. The kind of catatonic where you lack movement, activity or expression. I am simply blank. And I know why. I am struggling to go through all my notes and put them in some semblance of order.....and each time I read anything....it hurts. I physically and mentally go through the event again and I just feel sick. So I stop. And then I get paralyzed and can't move forward with this project.....that I know I need to do while the events are still fresh enough that I can get them into their proper order.
But it also draws me right back to the other catatonic moments. When you go blank to avoid hearing the harsh words that are spewing forth from his mouth when he is in the middle of a rage. Or the paralyitic freeze you go into when you fear that he might hit you, or pick up the kitchen knife and come at you.....knowing full well that he has no comprehension whatsover of his actions - so you "freeze" - become void of all expression, because the tiniest little flicker out of the corner of your eye might be what sets him off.
Or how about the never ending catatonic moments when you listen to see if he is breathing. He's asleep on the sofa and you look at him from across the room and try to see if his chest or stomach are moving - any indication at all that he is still alive.
I have to agree.....leaving and coming back....how could what you find when you return be any worse than the barrage of hateful words and looks he is going to continue to spew forth if you continue to stand there? I might not even leave a glass of orange juice! Depends on the severity of his actions/words. I might just run and get the heck out of there as fast as I could.....especially if I still had kids at home.
This is not an easy life, being the spouse of a diabetic. There are tough choices that we have to make moment by moment. And there is very little support for any of us in the medical community. For me, writing has been the catharsis. The thing that gets me through moment by moment. Gaining so many friends has just been a bonus to what I know I have to do to survive. If I have helped you in any way, then that is God's blessing to me - as it was not my intent from the beginning. I don't have the answers. I've not been trained in counseling. But I can certainly share my own experiences and if you gain from then, then I am more than happy that I am writing my episodes of the ups and downs, the never ending roller coaster, that merry-go-round that we each live on, in and with.
Today is a quiet day. A jammie sunday. Wishing each of you a peaceful day!
DW
Thursday, March 24, 2011
making progress
He goes to get labs in the morning, so I thought I'd predict what they will be!
His A1c will be higher than it last was. He's eating more. When he tests, it's still in the 280s. The Endo keeps upping his insulin....but the numbers don't go down.
He will still be very anemic. I know this because he is still taking loads and loads of naps. Sleeping way too much. Only working half days.
I'm praying that his creatinine will maintain, but I have a suspicion that it is going back up. Hopefully not too much.
His cholesterol will be off the chart. He's eating red meat trying to get the red blood cell count back up.
So, when we get the results, I'll post and we'll see how I'm doing. LOL!
It's been a nice week to tell the truth. I've had a couple of days out with girlfriends. Did a little spring yardwork. Did a little playing in my studio. He's been pretty quiet. Not talking much. Sleeping a lot. Watching way too much TV. But it's keeping him quiet. He is going to bed about 6:30 every night and that worries me. He doesn't go to sleep, but will nap off and on until about 10 pm, and then go to sleep until 7 am. And most mornings he sleeps past his alarm.
But as long as he is anemic, I would expect him to sleep too much.
He is starting to realize that he's making mistakes. He booked airline tickets and didn't put our full names on them. So I told him that he needs to call the correct that tomorrow.
I'm in the process of going through numerous pages of notes from the hospital and putting them all together. Quite a task if you ask me. But I need to do it before this next round of specialists visits that start on 4/1 so I can hand them out. I doubt they will get read....but I know no one is going to read through his 6" thick chart!
Overall, it's been a good week.
DW
His A1c will be higher than it last was. He's eating more. When he tests, it's still in the 280s. The Endo keeps upping his insulin....but the numbers don't go down.
He will still be very anemic. I know this because he is still taking loads and loads of naps. Sleeping way too much. Only working half days.
I'm praying that his creatinine will maintain, but I have a suspicion that it is going back up. Hopefully not too much.
His cholesterol will be off the chart. He's eating red meat trying to get the red blood cell count back up.
So, when we get the results, I'll post and we'll see how I'm doing. LOL!
It's been a nice week to tell the truth. I've had a couple of days out with girlfriends. Did a little spring yardwork. Did a little playing in my studio. He's been pretty quiet. Not talking much. Sleeping a lot. Watching way too much TV. But it's keeping him quiet. He is going to bed about 6:30 every night and that worries me. He doesn't go to sleep, but will nap off and on until about 10 pm, and then go to sleep until 7 am. And most mornings he sleeps past his alarm.
But as long as he is anemic, I would expect him to sleep too much.
He is starting to realize that he's making mistakes. He booked airline tickets and didn't put our full names on them. So I told him that he needs to call the correct that tomorrow.
I'm in the process of going through numerous pages of notes from the hospital and putting them all together. Quite a task if you ask me. But I need to do it before this next round of specialists visits that start on 4/1 so I can hand them out. I doubt they will get read....but I know no one is going to read through his 6" thick chart!
Overall, it's been a good week.
DW
Sunday, March 20, 2011
Anemia
Oh, the things you just keep learning - does it ever end?
The kidneys produce erythropoietin (EPO) which stimulates the bone marrow to produce the proper number of red blood cells neeeded to carry oxygen to viatl organs.
When the kidneys fail, EPO productions tops.
Diseased kidneys don't produce enough of it.
Anemia sets in.
When hubby was on dialysis, he got daily injections of EPO. But none since coming home.
How can you tell if you are anemic? Pull the lower eyelid down. If it is bloody red, then you are not anemic. If it is pale pink or washed out, then you are. Pretty simple, pretty accurate test for anemia.
Hubby is seriously anemic and has been since hospital discharge. Not getting any better. He goes to the nephrologist on 4/1 and we will talk to him about EPO injections.
He's taking iron pills. Not doing the trick.
He's eating red meat once in awhile, but that's hard for the kidney's to process. Sort of in a catch 22 situation.
As long as he remains this anemic, oxygen is not getting to tissue and organs. That's not so good. Reason why he seems to be confused at times? Forgetful? He's obviously weak - getting stronger, but man, is it ever a slow process.
I read somewhere that anemia can start with 50% of kidney function. I'm wondering if a unit of blood might help him out. Other than being weak, he is doing great. Recovery is just such an amazingly slow process in so many areas. We tried to go out to breakfast today - second time eating out in a month, and he needed to sleep almost all day long.
I'm starting to think life will never return to normal. Just too may complications from everything he's been through.
DW
The kidneys produce erythropoietin (EPO) which stimulates the bone marrow to produce the proper number of red blood cells neeeded to carry oxygen to viatl organs.
When the kidneys fail, EPO productions tops.
Diseased kidneys don't produce enough of it.
Anemia sets in.
When hubby was on dialysis, he got daily injections of EPO. But none since coming home.
How can you tell if you are anemic? Pull the lower eyelid down. If it is bloody red, then you are not anemic. If it is pale pink or washed out, then you are. Pretty simple, pretty accurate test for anemia.
Hubby is seriously anemic and has been since hospital discharge. Not getting any better. He goes to the nephrologist on 4/1 and we will talk to him about EPO injections.
He's taking iron pills. Not doing the trick.
He's eating red meat once in awhile, but that's hard for the kidney's to process. Sort of in a catch 22 situation.
As long as he remains this anemic, oxygen is not getting to tissue and organs. That's not so good. Reason why he seems to be confused at times? Forgetful? He's obviously weak - getting stronger, but man, is it ever a slow process.
I read somewhere that anemia can start with 50% of kidney function. I'm wondering if a unit of blood might help him out. Other than being weak, he is doing great. Recovery is just such an amazingly slow process in so many areas. We tried to go out to breakfast today - second time eating out in a month, and he needed to sleep almost all day long.
I'm starting to think life will never return to normal. Just too may complications from everything he's been through.
DW
Tuesday, March 15, 2011
Ahhhh....playing!
My sister came down yesterday. Again. We figured out that we are 2 1/2 months into 2011.....and she has spent a full month at our house. Mostly helping me through hubby's surgeries and recovery.
But this time, she came down to play. And that is all we have done. Hubby is doing well enough that I'm comfortable leaving him for extended periods of time.....but never more than 30 minutes from the house. He's done just fine. Sis and I have been shopping, doing art, sorting through craft things....and I am exhausted....but ever so happy.
And while life will never be "normal".....this is so good for me and for her. We are still talking about everything that went wrong in the hospital, and everything that's gone so right since he got home. We are doing fun things together.....being sisters. How healing is that? While I have 3 sisters, this one is my best friend. We are just a year apart in age and have so much in common....but are completely different. Basically, we just enjoy being together - in good times and in bad times.
It's so theraputic to simply get away from diabetes. To go off and spend a whole day not thinking about it at all. To be "free" from the worry. It was wonderful! And to tell you the truth, I don't feel guilty and I know I need to do this a little more often.
Tomorrow, day 3, we are going to stay home, but we have an art project we are going to do that will consume the bigger share ofthe day. I'm really looking forward to that.
The great news is that yesterday afternoon, we managed to get over 3/4 of our basement completely cleaned out. Took a full load to the thrift store today and she is taking a car load to a family in need near her. She lives nearly 3 hours away from me, so it's not like we can get together every week. This year has been exceptional due to hubby's hospitalization. But it's made us realize that we both want to live next to each other and amazingly, hubby has agreed. I think he sees how much support she has provided me. It's just that with both guys working so far apart...it's going to be a bit before any of us can move.
But to that end....my goal for this year is to downsize enough that we could move into a 1 level home....something wheelchaire accessible. I truly had never given a wheelchair a thought and when I attempted to get the 210 pound physical therapist down the ramps, I realized there was no way I could get my husband down them.....let alone up them. We simply have to move while we still can. Something I had honestly never given a thought to.
So, my sister and I were chatting today and she asked, "5 years ago, did you ever think you'd need to have a wheelchair and ramps in your home?' Of course, my answer was that I hadn't even considered it a year ago!" Interesting how the side effects of diabetes sometimes have a greater impact on our lives than what the actal diabetes has.
Bottom line - he's doing ok, and I'm finally having a bit of fun! Know that it won't last....but enjoying it while it does!
DW
But this time, she came down to play. And that is all we have done. Hubby is doing well enough that I'm comfortable leaving him for extended periods of time.....but never more than 30 minutes from the house. He's done just fine. Sis and I have been shopping, doing art, sorting through craft things....and I am exhausted....but ever so happy.
And while life will never be "normal".....this is so good for me and for her. We are still talking about everything that went wrong in the hospital, and everything that's gone so right since he got home. We are doing fun things together.....being sisters. How healing is that? While I have 3 sisters, this one is my best friend. We are just a year apart in age and have so much in common....but are completely different. Basically, we just enjoy being together - in good times and in bad times.
It's so theraputic to simply get away from diabetes. To go off and spend a whole day not thinking about it at all. To be "free" from the worry. It was wonderful! And to tell you the truth, I don't feel guilty and I know I need to do this a little more often.
Tomorrow, day 3, we are going to stay home, but we have an art project we are going to do that will consume the bigger share ofthe day. I'm really looking forward to that.
The great news is that yesterday afternoon, we managed to get over 3/4 of our basement completely cleaned out. Took a full load to the thrift store today and she is taking a car load to a family in need near her. She lives nearly 3 hours away from me, so it's not like we can get together every week. This year has been exceptional due to hubby's hospitalization. But it's made us realize that we both want to live next to each other and amazingly, hubby has agreed. I think he sees how much support she has provided me. It's just that with both guys working so far apart...it's going to be a bit before any of us can move.
But to that end....my goal for this year is to downsize enough that we could move into a 1 level home....something wheelchaire accessible. I truly had never given a wheelchair a thought and when I attempted to get the 210 pound physical therapist down the ramps, I realized there was no way I could get my husband down them.....let alone up them. We simply have to move while we still can. Something I had honestly never given a thought to.
So, my sister and I were chatting today and she asked, "5 years ago, did you ever think you'd need to have a wheelchair and ramps in your home?' Of course, my answer was that I hadn't even considered it a year ago!" Interesting how the side effects of diabetes sometimes have a greater impact on our lives than what the actal diabetes has.
Bottom line - he's doing ok, and I'm finally having a bit of fun! Know that it won't last....but enjoying it while it does!
DW
Friday, March 11, 2011
I'm going to have a heart attack yeT!!
I was in my studio working on an art project when I heard the loudest rumble type noise coming from upstairs. I ran up the steps as fast as I could calling out hubby's name and found him flat on his back on the floor. He was conscious, but dazed. He said he was standing up, putting his back brace on. He started to get tunnel vision and before he could move, he got light headed, his knees buckled and he went down, falling between the end of his bed and themwall, hitting both on the way down.
I told I'm to just lie there. Took his bp which was 108/77, pulse was 72. He took his glucose which was 165.
We got him up and into his bed after about 10 minutes on the floor.
So we had an interesting conversation.....what do I do if he does go completely unconscious. He reaffirmed that he does not want me to call 911. I asked him how long I go leaving him unconscious. He said he did not want me to call 911. He does not want to go to the hospital no matter what.
So I have this vision of him being outmcold for 3 weeks. Funny, but it's not. He scared me to death today just going light headed....what will I do when he passes out?
There has to be something going on. He doesn't want to call the doctor. So I will just blog it here so I have a record of what happened.
I keep thinking that if I have a heart attack, then I don't have to go thru this!!
Dw
I told I'm to just lie there. Took his bp which was 108/77, pulse was 72. He took his glucose which was 165.
We got him up and into his bed after about 10 minutes on the floor.
So we had an interesting conversation.....what do I do if he does go completely unconscious. He reaffirmed that he does not want me to call 911. I asked him how long I go leaving him unconscious. He said he did not want me to call 911. He does not want to go to the hospital no matter what.
So I have this vision of him being outmcold for 3 weeks. Funny, but it's not. He scared me to death today just going light headed....what will I do when he passes out?
There has to be something going on. He doesn't want to call the doctor. So I will just blog it here so I have a record of what happened.
I keep thinking that if I have a heart attack, then I don't have to go thru this!!
Dw
Thursday, March 10, 2011
My "sister" wives.....
Your comments get me through the day. Thank you so much!
I remember they gave hubby straight Sprite in the hospital - not diet sprite. I wondered what they were thinking! But they did limit his intake quite seriously.
You are very wise to be the permanent driver. I, too, will not go anywhere with hubby driving. Well, fortunately, at this point, he's not been released to drive. But if he does need to go somewhere, he will take his truck and I don't go with him.
As for the blood infection, be aware that if they dose him with high levels of antibiotics, he is likely to end up with c diff in the hospital as did my husband!
Overall, I think hospital staff needs training on diabetes. You would think with the high numbers of diabetics in this country that it would be foremost in training. But apparently, it isn't!
Here's prayers that your day did not go as bad as you anticipated! Hugs coming your way!
No temp, no low sugar. I think it was just a "thing" he went through. I turned on the fireplace, covered him with blankets and 2 hours later, he tossed the blankets off and turned the fireplace off. Thank goodness!!! :o)
Lynn, hubby sots his own pills, has his cell alarm set to take his insulin, he renews his own RX, he does all that. He has too. Yet he continues to admit certain things like having high blood pressure. For some odd reason, in his mind, if the BP monitor reads that his BP is good, then he doesn't have HBP....even though he takes meds to keep it down low. Strangest thing in my mind.
In the last 2 years, since his heart problems, I've been attending every medical appointment with him. Before that, I never went. And I found out what the problem was. He would go to the endo and tell her that he didn't have a BP problem! He would visit the nephro and tell him he didn't have a sugar problem (even with an A1C of 8.0!!!) So when I started going I'd just quietly say "but he does take atenolol for his bp"....or "he takes 32 units of Humulin RU 500 Concentrated in the morning" and the specialists started "getting" it. They are outside consults to our HMO and do not have access to his medical file. So I started copying stuff and putting it in binders and taking it along with me.
When he first went to see the cardiac specialist and told her that he did not have a BP problem - I nearly shot through the ceiling. I was so glad I was there. She took one look at me, rolled her eyes, held her hand up to "silence" me before I could get a word out and gave him the lecture of his life.....he was there because he absolutely had a blood pressure problem....and off she went. She did not mince words and I have loved her from that moment! First specialist who saw right through him! :o)
Lilly, just to clarify, it was two different dialysis machines.....each one of them broke!!! and I never took you as being flippant, not for a second! Your experience is quite valuable to me as I went into this cold turkey - having never done any research or asked any questions about dialysis. Because my hubby had always said he would never agree to dialysis, it was all quite frightening to me. I had to sign the release forms and that in itself was a huge step.
I know what you mean about not knowing whether to laugh or cry. I do really try to laugh most of the time. My husband, just this week, told a doctor that he no longer has heart problems. Well, I hate to tell him this, but remember, his veins were so bad they couldn't do 5 bypasses on him....they only found enough veins to do 3 bypasses. What does he think is going on in the 2 spots they couldn't bypass???? YIKES!!! We go to see the cardiologist on 4/20. I am quite anxious to see what she has to say when I tell her his heart rate was 140 for 2 days and 130 for another 3 days after surgery. It did not go up and down....it remained that high for 5 days. Now, tell me that didn't do some damage to his heart???
When I was talking to him this morning about my nightmares last night, I said that I thought the only thing he really remembered was his dry tongue. And maybe that was a true blessing. His quest for something wet, for ice, for a swab, for a wet washcloth....his desparate cry for just a sip of ice.....kept him from knowing all the other horrible things that were going on. And that he will never have any memory of it. But I was sitting right there and while he only remembers how dry his mouth was.....I remember 100% of every ounce of what was going on to every part of his body.
And that's where a diabetic has us beat to heck! They don't/won't/can't remember the things we do.
Love all your comments because I know we are in this together.....one day at a time......sometimes just one moment at a time.
DW
Tina wrote:
How have I survived this long ... well, I just love him. Year 1 went into year 2, into year 3 and so on and so on ... you get the picture. It has been really hard. As we are in year 6, I have been through the ups and downs, the driving nightmares, (I will not get into the car with him if he even thinks of driving, I am the permanent driver). As I read all of the posts on this site, I really feel for each and everyone of us that have to live through this nightmare! In my situation, my hubby has really been sort of healthy (maybe healthy is not the right word, but I guess he has not had all the "bonus issues" that I have read about). It has caught up to him. As I chat, he is in the hospital with a very high heart rate (they are treating him to hopefully make sure he does not have a stroke) he has a blood infection, (not sure how or where he got this), and the list goes on and on ... but onto the hospital care as a whole. He is a diabetic on dialysis, in the hospital with very little restrictions on his fluid intake, are you ******* kidding me. Obviously, this man cannot control his fluid intake by himself, so why do the nurses just come in and give him cups (20oz.each) of water and of course, my favorite, ginger ale (not diet, duh, he is a diabetic) and of course, he says nothing and just drinks it all down!!!!!!!!!!!!!! I guess when I really think of how I have survived the last 6 years, I will say prayers and lots of them! A really "bad" sense of humor! And, finally, just one day at a time. I have an awesome family whom I have gotten a ton of support from. I was listening to a talk show on the radio the other day and the speaker said "you can't climb over crap ... you just have to go through it". It made me chuckle to hear that, but maybe it's true! So I guess I just am in my really, really high "fishing boots" and "trudging through the crap!" So onto my "bad sense of humor", I will end my story here for the night because I gotta get my rest, because I just feel that it's going to be a really "crappy" day tomorrow!!!! Sleep well my sisters ... my prayers and love are with each and every one of us!Tina, very good advice - to wade through the crap one day at a time. It's all any of us can do. As for the high heart rate - high potassium? I read that can happen easily on dialysis. Happened to my hubby.
I remember they gave hubby straight Sprite in the hospital - not diet sprite. I wondered what they were thinking! But they did limit his intake quite seriously.
You are very wise to be the permanent driver. I, too, will not go anywhere with hubby driving. Well, fortunately, at this point, he's not been released to drive. But if he does need to go somewhere, he will take his truck and I don't go with him.
As for the blood infection, be aware that if they dose him with high levels of antibiotics, he is likely to end up with c diff in the hospital as did my husband!
Overall, I think hospital staff needs training on diabetes. You would think with the high numbers of diabetics in this country that it would be foremost in training. But apparently, it isn't!
Here's prayers that your day did not go as bad as you anticipated! Hugs coming your way!
Lilly wrote:
Best wishes to Tina, as I can't imagine how hard 6 years of dialysis and counting must be! She could probably teach us ALL something. As for your hubby being cold, is he running a fever? Usually when my husband is complaining about being cold, he has one. Might want to check (or maybe you already have). Wondering if there could be a low-grade infection going on after all his problems in the hospital, etc.
No temp, no low sugar. I think it was just a "thing" he went through. I turned on the fireplace, covered him with blankets and 2 hours later, he tossed the blankets off and turned the fireplace off. Thank goodness!!! :o)
Lynn wrote:
My hubby was in denial for years... so that is why at some point I told him I was not going to call in his pills pick them up and put them in the weekly pill dispenser...I wanted him to own the fact that he is diabetic...It was scary and one of our sons was mad at me...thought I didn't care about him...now he sees for us it worked/works...but hubby can still take care of it...if the day comes, I will help of course...but for him it MADE him accept his disease and deal with it...I also did it because I felt that if I had that many health problems I couldn't see him taking care of my pills etc...I knew I would have to...and I do for me now that I do have a disease...so any way...they HAVE to accept and embrace the disease...otherwise it's ALL on US and that's not fair to either of us. RIGHT LADIES? Enjoy the bubble bath...I started doing yoga and that seems to help me with everything! HUGS and LOVE PS cold? how is his thyroid?
Lynn, hubby sots his own pills, has his cell alarm set to take his insulin, he renews his own RX, he does all that. He has too. Yet he continues to admit certain things like having high blood pressure. For some odd reason, in his mind, if the BP monitor reads that his BP is good, then he doesn't have HBP....even though he takes meds to keep it down low. Strangest thing in my mind.
In the last 2 years, since his heart problems, I've been attending every medical appointment with him. Before that, I never went. And I found out what the problem was. He would go to the endo and tell her that he didn't have a BP problem! He would visit the nephro and tell him he didn't have a sugar problem (even with an A1C of 8.0!!!) So when I started going I'd just quietly say "but he does take atenolol for his bp"....or "he takes 32 units of Humulin RU 500 Concentrated in the morning" and the specialists started "getting" it. They are outside consults to our HMO and do not have access to his medical file. So I started copying stuff and putting it in binders and taking it along with me.
When he first went to see the cardiac specialist and told her that he did not have a BP problem - I nearly shot through the ceiling. I was so glad I was there. She took one look at me, rolled her eyes, held her hand up to "silence" me before I could get a word out and gave him the lecture of his life.....he was there because he absolutely had a blood pressure problem....and off she went. She did not mince words and I have loved her from that moment! First specialist who saw right through him! :o)
And Lilly wrote:
Unbelievable that the dialysis machine (actually broke!) twice. I can only imagine what that was like. I don't remember any machines breaking, but I do remember my husband going to have dialysis 3 times a week, and being on the machine for 4 hours (add at least another hour wait time and making sure the bleeding stopped before he left), in a large room with 11 other people all wrapped up in blankets like cocoons to stay warm. Most would fall asleep during the process even though they each had a television and headphones, none of them wanted to be there, and they all still felt like crap when they left. And then at least some would have horribly painful cramping later as a side effect of the dialysis. Knowing that, I don't ever want to do dialysis with him again, and I don't have the phobias like you do. Didn't mean to be flippant about your problems with that. It has to make everything so much harder! But no matter how you slice it, dialysis is a really rough way to have to live. I also wonder as you do, if the denial is exactly that: a survival mechanism. But it is still unreal the things that they will swear by! For example, hubby gets mad at me when I tell him he has heart problems. He will say: "But I don't have them anymore, because the bypass took care of it." Sometimes, you don't know whether to laugh or cry. And yes, I think our husbands are very much alike in this. Interesting that yours also loses track of time. Mine will always tell me he did something "yesterday," when I know that sometimes it was several days ago. The short term memory thing is troubling, as I'm not thinking it will get any better.
Lilly, just to clarify, it was two different dialysis machines.....each one of them broke!!! and I never took you as being flippant, not for a second! Your experience is quite valuable to me as I went into this cold turkey - having never done any research or asked any questions about dialysis. Because my hubby had always said he would never agree to dialysis, it was all quite frightening to me. I had to sign the release forms and that in itself was a huge step.
I know what you mean about not knowing whether to laugh or cry. I do really try to laugh most of the time. My husband, just this week, told a doctor that he no longer has heart problems. Well, I hate to tell him this, but remember, his veins were so bad they couldn't do 5 bypasses on him....they only found enough veins to do 3 bypasses. What does he think is going on in the 2 spots they couldn't bypass???? YIKES!!! We go to see the cardiologist on 4/20. I am quite anxious to see what she has to say when I tell her his heart rate was 140 for 2 days and 130 for another 3 days after surgery. It did not go up and down....it remained that high for 5 days. Now, tell me that didn't do some damage to his heart???
When I was talking to him this morning about my nightmares last night, I said that I thought the only thing he really remembered was his dry tongue. And maybe that was a true blessing. His quest for something wet, for ice, for a swab, for a wet washcloth....his desparate cry for just a sip of ice.....kept him from knowing all the other horrible things that were going on. And that he will never have any memory of it. But I was sitting right there and while he only remembers how dry his mouth was.....I remember 100% of every ounce of what was going on to every part of his body.
And that's where a diabetic has us beat to heck! They don't/won't/can't remember the things we do.
Love all your comments because I know we are in this together.....one day at a time......sometimes just one moment at a time.
DW
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