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Thread: Impact of Long Term Medical/Physical Conditions

  1. #1
    Chairman of the bored Maister's avatar
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    Impact of Long Term Medical/Physical Conditions

    My wife is an insulin dependent diabetic. When she first found out about it several years ago, she went into a psychological tailspin. She equated the diagnosis with an early death sentence and it took quite a bit of experience and education before she/we slowly learned it is a manageable condition, and not necessarily an early death sentence if one controls their blood sugars carefully.

    We are fortunate to live in the age of technological miracles we do because the condition would have been an early death sentence if it had been a century earlier. As it is, though, the condition is more or less an inconvenience – she/we has to ritually count carbohydrates every single time she eats anything, has to tote around testing equipment, different types of insulin, needles, alcohol swabs, we always have to factor in the length of time since eating before engaging in any physical activity or risk going into hypoglycemia. Wounds take longer to heal, illnesses linger days or weeks longer than normal…it’s a thousand and one little things that always seem to have to be taken into account; spontaneity has nearly vanished from our lives – there are no more impromptu lets-drop-everything-and-go-camping-right-this-minute events anymore. Numerous details must be planned in advance such as which foods to pack, how to pre-measure the quantities, will there be access to emergency medical treatment, and how to keep insulin cool must always be attended to before taking off.

    I know that there are a number of Cyburbians who either have long-term or permanent medical/physical conditions themselves or have family members who do. Caring for a family member with, say, Down Syndrome, autism, or having Multiple Sclerosis can change the trajectory of one’s life in some ways which would seem fairly obvious. My question for y’all is – in what ways do these sorts of long term conditions impact one’s life that may not be quite so obvious? Is it possible, for instance, to pursue long-term relationships….what monetary or social stresses occur….what unexpected nuisances/challenges have been encountered…how does it impact one’s perception of the future….or, heck, does it even cause one to question or alter one’s views on the Purpose and Meaning of Life?

  2. #2
    Cyburbian boiker's avatar
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    don't I know this!

    Mrs. Boiker had for most of her life thought there was something different about the way she dealt with things. When she was a child, her parents learned that they couldn't expect her to complete a task, such as cleaning, without it becoming an enormously complicated, methodical process. Clean your room turned into, take everything out of the room, including furniture, clothing in drawers, toys, etc. If things were not done this way, which my wife terms the "right" way, it was done wrong and incredible anxiety set in. Cleaning the fridge turned into removing all contents, including shelving, bleach/scrubbing, and returning all items in precise, organized way.

    The specific manner things had to be done along with the anxiety led her to massive depression. My wife and I realized the depression in 2004 and after baby blues compounded the depression it produced a trip to the emergency room twice. I've posted about this experience before, but in any case the final diagnosis was Obsessive Compulsive Disorder, General Anxiety, and Depression. All components are controlled well now with a strict daily regiment of various pills and frequent visits to therapy. I couldn't be more impressed with her will to control her illness. She's participated in intense therapy for almost 3 years and is on a much lower dose of meds than others with similarly severe conditions.

    The long term? She'll be on meds and therapy for the rest of her life. It's a small monetary price (not really, it's quite expensive even with insurance) to pay to ensure her lasting health and the health of our family.

    It's affected me more than her as I began to treat her a piece of glass. I tried to shelter her from all possible anxiety. I hid financial pinches from her, missed appointments, missed bills, and tried to do all housework, child rearing, and wage earning by myself. I wanted to cause nothing to harm her. This of course took a massive toll on me and I agreed to participate in couples counseling with her. That helped me learn that I can't protect her from everything and I have to trust her to be able to take care of herself, despite that past occurrences. It allowed me to open doors and discover things about me that I always knew, but didn't understand.

    The impact of her medical condition is so far reaching, but is well under control. It has improved our communication and understanding of each other. It has taught me to rely on her and realize she is a capable human and not a fragile, precious item that could break at any time. I love my wife for her strength and persistence to overcome disability.

    Quote Originally posted by Maister View post
    I think that society's attitudes about mental illness in particular are seriously conflicted. On the one hand everyone goes on about how deplorable it was the day Reagan turned tens of thousands of patients formerly in mental institutions out into the streets to fend for themselves (and it was for the record deplorable), but on the other hand, our personal encounters and experiences with mental illness tend to provoke very different responses - we really don't comprehend the nature of the yeast and tend to treat people with mental illnesses as if their condition were somehow their fault and dismiss them as material for anecdotes ('man, you wouldn't believe this kooky lady I talked to today, we'd sent her two violation notices that she didn't respond to and she finally comes back with this story about how she didn't correct it because she's bipolar and has depression. Lady, just get out there and paint the freakin' garage door already sheesh!....')
    I think society believes that if you have a mental illness you should be able to will it away. Society also tends to believe that if you don't demonstrate the most severe symptoms of the condition, you don't have it. Truth be told, even if someone has slight condition, they have the condition and treatment is adjusted accordingly for the severity of the condition.

    My wife has been very forthright with her condition and candidly talks of her experiences to family and friends. She'd rather them know the score, than leave them speculating. Also, she makes it clear that she isn't in search of pity. I commend her.

    I, myself, recently learned (although it was suspected) that I have moderate ADHD (without the hyperactive part). Inattentiveness is my biggest issue. I told my parents this and they said "well, you didn't struggle in school, you can't be ADHD." I pointed them to studies and literature which shows that many sufferers are actually quite intelligent and breeze through primary and high school (I did). In college, I suffered tremendously unless I was intently interested in the topic (re: hyperfocus). Other stuff, such as advanced calculus I didn't have the patience for and couldn't deal with the failure of not understanding. This has persisted into my career. Now two months into treatment, I've noticed an improvement in my ability to carefully plan and carry out tasks. I tend not to procrastinate to the bitter end and rush my work. As a skeptic, I'm unsure if this is purely me (meds are a placebo) or if the meds are actually working. Based on what my wife thinks, the meds clearly work. I want to trust her and my docs judgment and I think they're right.
    Last edited by boiker; 19 Nov 2008 at 11:12 AM.
    Dude, I'm cheesing so hard right now.

  3. #3
    Chairman of the bored Maister's avatar
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    I think that society's attitudes about mental illness in particular are seriously conflicted. On the one hand everyone goes on about how deplorable it was the day Reagan turned tens of thousands of patients formerly in mental institutions out into the streets to fend for themselves (and it was for the record deplorable), but on the other hand, our personal encounters and experiences with mental illness tend to provoke very different responses - we really don't comprehend the nature of the yeast and tend to treat people with mental illnesses as if their condition were somehow their fault and dismiss them as material for anecdotes ('man, you wouldn't believe this kooky lady I talked to today, we'd sent her two violation notices that she didn't respond to and she finally comes back with this story about how she didn't correct it because she's bipolar and has depression. Lady, just get out there and paint the freakin' garage door already sheesh!....')

  4. #4
    Cyburbian Plus
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    As several of you know I am a Type 2 Diabetic and have been for 15+ yrs now.
    I have managed pretty well in keeping my hA1bc around 6.5 because of carb counting, walking, and the 3 meds I am on.
    Have not been able to lose the desired amount of weight.

    I agree with Maister about timing of events/activities specially eating, and long meetings.
    I am testing myself 3 times a day.
    Oddball
    Why don't you knock it off with them negative waves?
    Why don't you dig how beautiful it is out here?
    Why don't you say something righteous and hopeful for a change?
    From Kelly's Heroes (1970)


    Are you sure you're not hurt ?
    No. Just some parts wake up faster than others.
    Broke parts take a little longer, though.
    From Electric Horseman (1979)

  5. #5
    Cyburbian mike gurnee's avatar
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    Zoning Enforcement Issue:
    I know that "collecting things to the extreme" is a mental illness. I have been in situations where the home was filled to the ceilings with such things. But when neighbors and governing body want the yard cleaned up, the codes do not have counseling as a remedy.
    comments?

  6. #6
    Cyburbian Plus Whose Yur Planner's avatar
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    First, MZ would have been/would be a great source of insight on this issue, with all of her struggles.

    Second being a wheeze, I have to be aware of my environment. Avoiding your triggers is a big part of not having attacks. I try to avoid smoky rooms, enclosed rooms that are being painted, most cleaning chemicals. I also have my inhaler with me at all times.

    A related sidebar. Asthma, for a long time, was considered psychosomatic. This belief kept me from seeking proper treatment for a long time. That, and being a guy, I thought I should be 10 foot tall and bullit-proof. It was only when a doctor sat me down and explained the problem was in my lungs, not my head, that I dealt with it a lot better.
    When did I go from Luke Skywalker to Obi-Wan Kenobi?

  7. #7
    Cyburbian Plus Zoning Goddess's avatar
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    Quote Originally posted by Maister View post
    I think that society's attitudes about mental illness in particular are seriously conflicted.
    I realized in college (over 30 years ago) that I have OCD. Ten years ago or so, I was diagnosed with general anxiety disorder. Unfortunately, no drug therapy worked for me, and I was tried on at least a dozen. It is unfortunate that to get even a minimal dose prescription for panic attacks, you have to see a shrink (they always run way late, and you have to go every 30 days... hey, you don't have to do that with any other meds). So I get to wake up a few times a month with a panic attack, and hyperventilate on the road.

    My team and I were travelling to a meeting a few years ago with our boss who said something along the lines of "Anyone with a mental illness should not be allowed to have a gun". I liked the boss, but I had to ask "Do you think I would be OK to get a gun, since I have a 'mental illness'?" And he was so surprised.

    I know I get nervous a lot. I worry ALL THE TIME ABOUT EVERYTHING. It's frustrating. But I guess the plus is, I know what my problem is.

  8. #8
    Super Moderator kjel's avatar
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    Quote Originally posted by mike gurnee View post
    Zoning Enforcement Issue:
    I know that "collecting things to the extreme" is a mental illness. I have been in situations where the home was filled to the ceilings with such things. But when neighbors and governing body want the yard cleaned up, the codes do not have counseling as a remedy.
    comments?
    I've seen a special on TLC a number of times about "hoarders". One of the people featured lived in NYC and rather than just merely clean out the apartment they assigned her with a mental health professional to help address some of her underlying issues. I suppose that if I were a code enforcement/government agent faced with this issue I would try and connect the hoarder with the community mental health office.

    *****
    OK for the personal take on chronic health conditions on the impact of daily life. Like various others on the boards I am a Type II diabetic with the additional bonus of being insulin resistant, have high blood pressure, seasonal asthma, and have had the distinct pleasure of several bouts of shingles....all without the benefit of having health insurance.

    The diabetes is controlled quite well, it is not uncommon that my A1C is 6.1-6.4 which is very good and close to the normal range of <6.0. I stick myself morning and night and sometimes during the day if I'm feeling crappy. So far it is managed through twice daily medication and diet control. Food issues are a big thing especially when traveling and unknown restaurants. While traveling in Asia this was slightly problematic because in many places rice was the central staple of the diet. It caused many curiosities when eating with locals because I can't eat more than 1/2 cup rice without major detriment to my blood sugar. Fortunately there were plenty of vegetables, fresh fish and seafood, and dal in abundance so I made do pretty well with a bit of advance inquiry and preparation.

    The blood pressure is not too problematic so long as I take medicine and try to be mindful of my stress level and stay away from over processed foods high in sodium which cause me to bloat up. The only downside on the medication is that it causes frequent urination so I sort of have to plan when to take the medicine based on availability of public facilities. This posed a problem when I was traveling because public facilities are pretty much non-existent in many of the places I was or were in such a dismal state you didn't want to use them anyways.

    After three bouts of shingles in a short period of time the doc and I decided on a daily anti-viral therapy because they are very painful and really impact your daily activities. Because I have a host of auto-immune issues: diabetes, allergies, asthma we figured that my system is somewhat compromised and susceptible to recurrent bouts. The only downside is that the daily cost of the medicine is $8...$320 a month which would not be possible without the patient assistance program from the pharma company and much form filling.

    It was pretty depressing a couple of years ago because I had no insurance of any sort, had to rely upon a free clinic for routine care which was not at all convenient, pay for medicines out of my own pocket, and pray to god that I do not become really ill and require hospitalization. At least through the university I have access to their health clinic and some basic routine blood tests, but no prescription coverage. My doc works with me to prescribe medicines on the $4 list from Target and helps get the really expensive one from the pharma company. I can only imagine how this would impact people in the same situation that weren't as resourceful or knowledgeable as I am about how to find assistance and care.
    "He defended the cause of the poor and needy, and so all went well. Is that not what it means to know me?" Jeremiah 22:16

  9. #9
    Cyburbian SW MI Planner's avatar
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    I haven't been diagnosed with anything, thankfully, and this might take the thread down a different path than what was intended, but what about obesity. Is obesity *ever* a diagnosis? Here is a BMI calculator from the Center for Disease Control. Basically anything over 25 is overweight, and anything over 30 is obese.

    I have been chubby probably most of my entire life, but after college it got worse and I gained probably 50 pounds over like 5 years and my bmi was up to 37.9, way past the point of obese. Then, during the divorce I had friend and family dealing with things beyond their control (cancer, etc.) and I decided that it was bs and this was something I *could* control, and lost 75 pounds (plus a 250 pound husband!). I am down to a bmi of 26.6 and weigh what I did in high school, but still want to lose another 20/30 pounds.

    Ok, finally my point - I went to a variety of doctors over the past ten years, mainly as annual checkups, not because of any certain problem per se, but NEVER once did I go to a doctor and had them say that I should lose weight. Never once did a doctor talk to me about the risks of being overweight or the heath problems that can be associated with it.This is an epidemic in the United States, and causes so many ancillary problems, but yet doctors don't address it. I just don't get it?

  10. #10
    Cyburbian Seabishop's avatar
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    Quote Originally posted by SW MI Planner View post
    Ok, finally my point - I went to a variety of doctors over the past ten years, mainly as annual checkups, not because of any certain problem per se, but NEVER once did I go to a doctor and had them say that I should lose weight. Never once did a doctor talk to me about the risks of being overweight or the heath problems that can be associated with it.This is an epidemic in the United States, and causes so many ancillary problems, but yet doctors don't address it. I just don't get it?
    I wonder if doctors are just being politically correct at the expense of people's health? I know women who would be very offended if a doctor mentioned their weight.

  11. #11
    Cyburbian SW MI Planner's avatar
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    Quote Originally posted by Seabishop View post
    I wonder if doctors are just being politically correct at the expense of people's health? I know women who would be very offended if a doctor mentioned their weight.
    Possibly, but I don't think they are holding up the hippocratic oath then. And seriously, tough if someone is offended, it could save their life someday. Just my .02

  12. #12
    Cyburbian imaplanner's avatar
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    Quote Originally posted by SW MI Planner View post
    I haven't been diagnosed with anything, thankfully, and this might take the thread down a different path than what was intended, but what about obesity. Is obesity *ever* a diagnosis? Here is a BMI calculator from the Center for Disease Control. Basically anything over 25 is overweight, and anything over 30 is obese.

    I have been chubby probably most of my entire life, but after college it got worse and I gained probably 50 pounds over like 5 years and my bmi was up to 37.9, way past the point of obese. Then, during the divorce I had friend and family dealing with things beyond their control (cancer, etc.) and I decided that it was bs and this was something I *could* control, and lost 75 pounds (plus a 250 pound husband!). I am down to a bmi of 26.6 and weigh what I did in high school, but still want to lose another 20/30 pounds.

    Ok, finally my point - I went to a variety of doctors over the past ten years, mainly as annual checkups, not because of any certain problem per se, but NEVER once did I go to a doctor and had them say that I should lose weight. Never once did a doctor talk to me about the risks of being overweight or the heath problems that can be associated with it.This is an epidemic in the United States, and causes so many ancillary problems, but yet doctors don't address it. I just don't get it?

    According to that stupid calculator I am overweight. I'm 6'2 and 195 and noone has ever called me overweight- quite the opposite actually. That calculator sucks.

  13. #13
    Cyburbian jmello's avatar
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    Quote Originally posted by imaplanner View post
    According to that stupid calculator I am overweight. I'm 6'2 and 195 and noone has ever called me overweight- quite the opposite actually. That calculator sucks.
    I agree. At 6'2", it says I should weight less than 195. I would look like Calista Flockhart at the weight. Trust me. Does it take into account muscle mass?

  14. #14
    Cyburbian SW MI Planner's avatar
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    Quote Originally posted by jmello View post
    I agree. At 6'2", it says I should weight less than 195. I would look like Calista Flockhart at the weight. Trust me. Does it take into account muscle mass?
    No clue. It just let me avoid posting my weight

  15. #15
    Unfrozen Caveman Planner mendelman's avatar
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    Quote Originally posted by imaplanner View post
    According to that stupid calculator I am overweight. I'm 6'2 and 195 and noone has ever called me overweight- quite the opposite actually. That calculator sucks.
    Then with me being 6'1", 225 lbs I would probably be morbidly obese and in need of a crane to get me out of my house.
    I'm sorry. Is my bias showing?

    Let's not be didactic in this profession, because that is a path to disillusion and irrelevancy.

    Six seasons and a movie!

  16. #16
    Cyburbian DrumLineKid's avatar
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    Hey Maister

    To get back to your original question.....

    When I had been married a year, like two weeks after we had the reserved cake, I was in the hospital with kidney failure. I was put on dialysis then and stayed that way for 18 years. My wife stayed with me (which isn't the typical case when young people are faced with this), I graduated college, found work, we had two sons. While I was on dialysis, I impressed upon my wife the need to have her, essentially, self sufficient. The circumstances forced me to concentrate on success 'cause I didn't know how long I would last. (I've been told the average time for a person to be on dialysis is something like 1 to 2 years.) I pushed...top of my class, running a local CD entitlement program in 6 years, Director in 16(?) with a BS. And every other night I would get home at 11:00 PM after treatment.

    I am now reaping the harvest of my attitudes. I am no longer as able after my car crash. I see double a part of the time, walk with a cane (after effects of the TBI). I am now just a Planner for an MPO. I don't (can't?) drive. My wife is enjoying her new found self-sufficient abilities in a new work and family position. She's the one coming home at 11:00PM every night she works 'cause they are short handed. I can't stand it. I'm just the husband that puts demands on her, like driving me to work making her late. I feel now that I am just in the way. I would try to find a more responsible, rewarding position anywhere, but all the Drs. and wifey are telling me not to expect too much, to be careful. I might over reach and not be able to perform that more responsible, rewarding job.

    The point of all of this nonsense is, please help your wife do what she needs to do to keep her kidney function, an all too common problem of those with diabetes. It really is a family responsibility. Stupid things happen otherwise.

    Good luck.



    DLK



    (I don't know if I've added to the conversation here. Hopefully I have. But take much of what I've written here with a grain of salt. The brain injury can make a person paranoid and easily misinterpret reality, though I think not.... Either that or I am just depressed. We had a saying when I was in school...FTITCTAJ.)
    "There are people in every time and every land who want to stop history in its tracks. They fear the future, mistrust the present and invoke the security of a comfortable past which, in fact, never existed." RFK

  17. #17
    Cyburbian JNL's avatar
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    Quote Originally posted by Maister View post
    ...comprehend the nature of the yeast...
    What is this yeast you speak of? (sorry, couldn't resist!)
    Quote Originally posted by Maister View post
    My question for y’all is – in what ways do these sorts of long term conditions impact one’s life that may not be quite so obvious? Is it possible, for instance, to pursue long-term relationships….what monetary or social stresses occur….what unexpected nuisances/challenges have been encountered…how does it impact one’s perception of the future….or, heck, does it even cause one to question or alter one’s views on the Purpose and Meaning of Life?
    I've been living with chronic hand pain for 5+ years, and managing it with some expensive non-subsidised anti-inflammatories (can't take aspirin or ibuprofen for other reasons). The pain is caused by a rare type of benign tumour in my hand. Mostly, I forget about it, and feel fortunate that it doesn't affect my life too much. But I have been surprised at myself a couple of times, at how upset I got when I ran out of my pain meds in Canada and couldn't source anything similar over there, and recently I threw my toys when my insurance company said they weren't going to cover any costs in relation to my upcoming surgery (this is now sorted - they had made a clerical error). I was surprised because I hadn't realised how much it was affecting me - I guess it shows that even when you're 'managing' a condition, it can get you down occasionally. In the grand scheme of things, it's not a big deal, but I always need to carry pain meds because if I get caught out without them, I'm not a happy girl!

    My oldest sister has schizophrenia, and figuring out how to help/act around/not upset/understand her is an ongoing process for all of us. She goes through good and bad phases, and probably will for the rest of her life. She has never had a long -term relationship (she's now 34), is really terrible with money, and needs extra support and understanding from employers. She's doing really well though - holding down a full-time job that went from volunteer to paid because they liked her so much, is reasonably independent, and has made friends with people at her church.

    In some ways, her condition has brought our family closer, but it may also have contributed to my parents' marriage breakup.

    It's amazing how many of us deal with long term medical and physical conditions - many of them unseen to an outsider, but having a big impact on how we live.

  18. #18
    Cyburbian Emeritus Bear Up North's avatar
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    Katie has to take a heavy-duty shot three times a week, to attempt to keep her MS from advancing to another stage. The shots leave some marks on her legs but there is no other visible evidence that she has been poked. Her sister has to take insulin (shots) daily.

    We have been told that MS can be divided into three groupings (or major stages). Within those stages are three levels (or minor stages). If you are in the lowest grouping (1-2-3) you have been diagnosed with MS and have some issues related to the disease. Those issues would include some strength problems, some minor vision problems (in just one eye is normal). The middle grouping describes conditions that are more severe, but a person in that grouping can still live a relatively normal life, with some conditions. (Hot tubs are strictly off-limits, because the docs do not want an MS patient's body to heat up.)

    When a person with MS reaches the top three stages they lose their ability to live a normal life. Wheelchairs, assistance with everyday movement and functions, and ultimately a body that shuts down......all in those last stages.

    Katie is about a 3. She has been at that level since she was diagnosed, about 8 years ago. She may stay at that level all of her life. It could start to advance and stop at a new mid-level. It could start to advance and move to the highest levels. The fear of that happening keeps her awake at night.
    _____

    You all know about my issue, with Hodgkin's Lymphoma, since 1996. Months of radiation, regular chemotherapy, high-dose chemotherapy, and a bone marrow transplant have all helped me fight the cancer off. So far so good, but I think about it every day. That is the impact for me.

    Bear
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