Doctor appointment leads to more deep thought
Warning: This is a really long post again. Definitely not the light, happy kind. So proceed at your own risk.
I saw a new doctor on Thursday. Since my primary care doctor left the practice and his replacement won't be starting until July or August, his patients are kind of left in limbo, seeing whichever other doctor happens to be available.
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I liked the "bedside manner" of the doctor I saw. She listened carefully, took notes, asked lots of questions, and took the time to interact (at least until she abruptly rushed out of the room at the end of the appointment, leaving me wondering if I was supposed to go or stay). With my level of brain-fog and mental slowness during a flare-up, though, I did find it very difficult to understand her rapid speech and heavy Asian accent.
Basically, she took an update on how I'm doing, and then had some blood and urine testing done to re-check my thyroid, function, kidney function, do a metabolic panel (I think that's what it's called?), check for mononucleosis, and check a few key vitamin/mineral levels.
She told me about one medication option--I can't remember what it was called--that she has seen help one patient with severe fatigue issues. She said that it's normally an anti-anxiety drug, but with this particular patient it helped concentration levels, mental clarity and fatigue.
Frankly, I was rather unimpressed. It seemed rather a stretch to take a single case study of a patient who had basically fatigue, malaise and difficulty concentrating for a mere 9 months (the doctor didn't mention pain, or a diagnosis of any specific condition) and use that one anecdote to justify an off-label use of a strong medication for a patient who has had fibromyalgia and chronic fatigue syndrome for over 12 years.
I'm guessing it likely that the other patient probably had fatigue and malaise because of depression (quite common) since the anti-depressant/anti-anxiety drug helped so much, "and with her ATTITUDE, too!" the doctor said. It didn't sound at all like she actually had a similar condition to what I deal with.
The doctor said that there could be side effects harming the heart and kidneys and the medication was quite addictive. So, considering my family history of kidney disease and heart problems, and the fact that I've had heart palpitations, she would recommend caution in deciding to use the medication, but that if I was feeling bad enough she would recommend considering using it.
Basically, if I really wanted the doctor to prescribe something to try to make me feel better, she could prescribe it after running some tests on my heart and kidneys to make sure they're OK first. Oh, and also I can't take it while nursing. To her credit, she didn't pressure me to wean Ebee faster than I'm already attempting it.
I've worked hard to manage my illness without medications, considering that I know there's technically no "cure" for my conditions and (as readers of my blog would know) I'm not into using pharmaceuticals unless absolutely necessary. So it's highly unlikely that I'd try something like this just on the off chance that it could help, when even the doctor isn't sure it's really a good idea.
The doctor went on to say that she was really impressed with my attitude and my approach to managing my health, and that basically I'm doing better than could be expected. They always say that. There's really nothing else they can do for me except continue to monitor things like kidney and thyroid function every year or so. They always say that, too.
I asked about a referral to a rheumatologist. My previous doctor had said that if my tests last time for things like lupus, thyroid function, lyme disease, etc. came back normal (which they did) the next step would be to refer me to a rheumatologist. Rheumatology is the specialty fibromyalgia would fall under, but despite having had fibromyalgia for some 12+ years, I've never actually seen a rheumatologist.
This doctor didn't see the point of referring me to a specialist. She said that since fibromyalgia and chronic fatigue syndrome aren't treatable anyway, there's nothing a rheumatologist would be able to do to make me feel better. So I didn't need to see one.
I explained that I was considering some options for getting assistance, such as applying for disability (considering that I've never been able to hold down a job--even a weekly volunteer position--for long in the last 10 years, and had to drop out of college because of my health issues). If I could qualify for disability insurance payments, it would go a long way toward enabling us to hire someone to help with the kids and/or housework.
I think that if I could get more help with things like housework and meal preparation, it might allow me to focus my limited energy on spending time with the kids. As it is, most days we do the bare minimum of school and then they read and entertain themselves for most of the rest of the day and have "quiet time" in the afternoon while I rest. DH does what he can, but he works full-time and takes the kids to all their activities, does almost all the shopping and errands, etc. already.
Sometimes I just get so tired of being sick and tired. It takes almost all of my non-resting time and energy, most days, just to get everyone fed and dressed, supervise math and phonics, prepare meals, deal with any needs the kids have, and maybe--if I'm lucky--do a load of dishes or laundry.
It breaks my heart to constantly be making excuses as to why I can't play with, read to, or go on outings with the kids because I'm too tired and/or in too much pain. On a good day I don't hit the wall until close to dinner time or even bed time; but on most days I'm doing well to get through lunch before I run out of spoons .
The doctor strongly advised me to put the kids in school. Not for academics; when I explained what types of things they're doing and reading, she agreed that being in a kindergarten and first grade class would benefit them little if at all from an academic standpoint.
She was worried about their social development, until I explained that they spend time with other kids on at least 4-5 different occasions each week (DH takes them to Sunday School, AWANA, and various music/dance/swimming lessons, and we have our church home group weekly which includes 13 kids in our house playing for several hours while the adults have Bible study and prayer).
But what she said that really rattled me was this: "Your children need to be around healthy people; especially other healthy kids, but healthy adults too. They need to see and spend a lot of time with people who have normal health. Because you don't want sickness to be their reality.
"You have been sick all their lives; all they know is a mother who is ill. A mother who is tired and ill most of the time. That's not good for kids, to be around sickness all the time. They will think it's normal; they'll worry about it. They might start spending a lot of time thinking about whether their own bodies are sick or not. You need to make sure sickness is not their reality."
That struck the deepest place in my heart. Especially since we were so worried about Ebee's health for the first couple of years. I really don't want my kids' reality to be pervaded by health issues. And yet our household has definitely been more affected by health issues and the related stress than most households are. We have had a lot of concerns about health issues over the years.
I try to minimize that as much as possible; I try to be careful about what I say in their hearing and am very careful what I say to them, but I know they have picked up on the concern, especially when Ebee was so unwell for so long.
I don't talk to them a whole lot about my health issues. Usually I make other excuses--the weather, the time, needing to cook dinner, etc--for why I can't always do with them the things they ask.
When I got married and started having kids, I truly thought my health issues were largely behind me. Because I'd improved so much from where I had been, and I expected the improvement to continue. I'd gone from nearly needing a wheelchair and being almost completely disabled, to being so much closer to normal. I thought I was well, or very nearly so.
But I've been making excuses for years--too many years. I've always thought that once I get over this cold, or once I get things better organized, or once we get out of the infant stage, or once we get past this issue/illness/whatever, or once I start getting more sleep, or once I figure out how to tweak my diet just perfectly--then, THEN I'd be really well.
I'd have energy like a normal person, or very nearly so. My short-term memory and mental clarity would return. I wouldn't be in so much pain. I'd have the energy to carry out the joyful, creative, active, exuberant life I long for. I'd be healthy.
But 9 years later, I'm still sick most of the time; still debilitated to the point that I rarely go anywhere or do anything, because it taxes me too much. I can muster up the energy to appear normal for a while--sometimes for several hours, occasionally for a few days. But I pay for it later. The whole family pays for it.
As the spoon story says, borrowing spoons from tomorrow has its consequences. I'm learning it's not worth being mostly out of commission for the next few days or weeks to overdo it one day, even though I can push myself that way and appear to have normal energy and health for a little while.
Sometimes I wonder if it was really wise to get married and have kids. But my kids are such wonderful people. And, despite my health issues and despite the mistakes we make, I do think DH and I are pretty good parents. I can't look at my kids and wish they didn't exist. I just can't.
I also believe that God knows what He's doing, and that He has a plan somehow which includes me and DH having these kids and being, at least for the moment, in this situation. (I sure hope the plan includes changing the situation soon, though. Please, Lord?)
No, I can't regret getting married and having kids. Having my husband and kids in my life is the most wonderful, incredible thing I can imagine. I often wonder if they would have been better off with a different, healthier wife and mother--but with a different mother, these kids wouldn't exist.
However. Would it really be better for the kids not to be around me so much, as the doctor suggested? Would it? Is it bad for them to spend a lot of time with a person who is less than healthy, even though that illness is not contagious or harmful to others? That is one of the most heartrending questions I have ever had to contemplate.
All I ever really wanted (well, besides the numerous pipe dreams like being a veterinarian, public speaker, or writer) was to get married, have a lot of kids, homeschool them, and dedicate my life to raising them during their childhood years.
For this year I really think that we are best meeting their needs and giving them the best education, teacher/student ratio, customized curriculum, and spiritual/moral training possible by keeping them home. But next year? It's something we can only approach with as much thought, wisdom and prayer as possible.
But I don't want to just do what I want, or even what's best for me. We have to do what's best for them. Or at least the best we can manage under the circumstances.
The question is always, what is that?
I saw a new doctor on Thursday. Since my primary care doctor left the practice and his replacement won't be starting until July or August, his patients are kind of left in limbo, seeing whichever other doctor happens to be available.
#############################
I liked the "bedside manner" of the doctor I saw. She listened carefully, took notes, asked lots of questions, and took the time to interact (at least until she abruptly rushed out of the room at the end of the appointment, leaving me wondering if I was supposed to go or stay). With my level of brain-fog and mental slowness during a flare-up, though, I did find it very difficult to understand her rapid speech and heavy Asian accent.
Basically, she took an update on how I'm doing, and then had some blood and urine testing done to re-check my thyroid, function, kidney function, do a metabolic panel (I think that's what it's called?), check for mononucleosis, and check a few key vitamin/mineral levels.
She told me about one medication option--I can't remember what it was called--that she has seen help one patient with severe fatigue issues. She said that it's normally an anti-anxiety drug, but with this particular patient it helped concentration levels, mental clarity and fatigue.
Frankly, I was rather unimpressed. It seemed rather a stretch to take a single case study of a patient who had basically fatigue, malaise and difficulty concentrating for a mere 9 months (the doctor didn't mention pain, or a diagnosis of any specific condition) and use that one anecdote to justify an off-label use of a strong medication for a patient who has had fibromyalgia and chronic fatigue syndrome for over 12 years.
I'm guessing it likely that the other patient probably had fatigue and malaise because of depression (quite common) since the anti-depressant/anti-anxiety drug helped so much, "and with her ATTITUDE, too!" the doctor said. It didn't sound at all like she actually had a similar condition to what I deal with.
The doctor said that there could be side effects harming the heart and kidneys and the medication was quite addictive. So, considering my family history of kidney disease and heart problems, and the fact that I've had heart palpitations, she would recommend caution in deciding to use the medication, but that if I was feeling bad enough she would recommend considering using it.
Basically, if I really wanted the doctor to prescribe something to try to make me feel better, she could prescribe it after running some tests on my heart and kidneys to make sure they're OK first. Oh, and also I can't take it while nursing. To her credit, she didn't pressure me to wean Ebee faster than I'm already attempting it.
I've worked hard to manage my illness without medications, considering that I know there's technically no "cure" for my conditions and (as readers of my blog would know) I'm not into using pharmaceuticals unless absolutely necessary. So it's highly unlikely that I'd try something like this just on the off chance that it could help, when even the doctor isn't sure it's really a good idea.
The doctor went on to say that she was really impressed with my attitude and my approach to managing my health, and that basically I'm doing better than could be expected. They always say that. There's really nothing else they can do for me except continue to monitor things like kidney and thyroid function every year or so. They always say that, too.
I asked about a referral to a rheumatologist. My previous doctor had said that if my tests last time for things like lupus, thyroid function, lyme disease, etc. came back normal (which they did) the next step would be to refer me to a rheumatologist. Rheumatology is the specialty fibromyalgia would fall under, but despite having had fibromyalgia for some 12+ years, I've never actually seen a rheumatologist.
This doctor didn't see the point of referring me to a specialist. She said that since fibromyalgia and chronic fatigue syndrome aren't treatable anyway, there's nothing a rheumatologist would be able to do to make me feel better. So I didn't need to see one.
I explained that I was considering some options for getting assistance, such as applying for disability (considering that I've never been able to hold down a job--even a weekly volunteer position--for long in the last 10 years, and had to drop out of college because of my health issues). If I could qualify for disability insurance payments, it would go a long way toward enabling us to hire someone to help with the kids and/or housework.
I think that if I could get more help with things like housework and meal preparation, it might allow me to focus my limited energy on spending time with the kids. As it is, most days we do the bare minimum of school and then they read and entertain themselves for most of the rest of the day and have "quiet time" in the afternoon while I rest. DH does what he can, but he works full-time and takes the kids to all their activities, does almost all the shopping and errands, etc. already.
Sometimes I just get so tired of being sick and tired. It takes almost all of my non-resting time and energy, most days, just to get everyone fed and dressed, supervise math and phonics, prepare meals, deal with any needs the kids have, and maybe--if I'm lucky--do a load of dishes or laundry.
It breaks my heart to constantly be making excuses as to why I can't play with, read to, or go on outings with the kids because I'm too tired and/or in too much pain. On a good day I don't hit the wall until close to dinner time or even bed time; but on most days I'm doing well to get through lunch before I run out of spoons .
The doctor strongly advised me to put the kids in school. Not for academics; when I explained what types of things they're doing and reading, she agreed that being in a kindergarten and first grade class would benefit them little if at all from an academic standpoint.
She was worried about their social development, until I explained that they spend time with other kids on at least 4-5 different occasions each week (DH takes them to Sunday School, AWANA, and various music/dance/swimming lessons, and we have our church home group weekly which includes 13 kids in our house playing for several hours while the adults have Bible study and prayer).
But what she said that really rattled me was this: "Your children need to be around healthy people; especially other healthy kids, but healthy adults too. They need to see and spend a lot of time with people who have normal health. Because you don't want sickness to be their reality.
"You have been sick all their lives; all they know is a mother who is ill. A mother who is tired and ill most of the time. That's not good for kids, to be around sickness all the time. They will think it's normal; they'll worry about it. They might start spending a lot of time thinking about whether their own bodies are sick or not. You need to make sure sickness is not their reality."
That struck the deepest place in my heart. Especially since we were so worried about Ebee's health for the first couple of years. I really don't want my kids' reality to be pervaded by health issues. And yet our household has definitely been more affected by health issues and the related stress than most households are. We have had a lot of concerns about health issues over the years.
I try to minimize that as much as possible; I try to be careful about what I say in their hearing and am very careful what I say to them, but I know they have picked up on the concern, especially when Ebee was so unwell for so long.
I don't talk to them a whole lot about my health issues. Usually I make other excuses--the weather, the time, needing to cook dinner, etc--for why I can't always do with them the things they ask.
When I got married and started having kids, I truly thought my health issues were largely behind me. Because I'd improved so much from where I had been, and I expected the improvement to continue. I'd gone from nearly needing a wheelchair and being almost completely disabled, to being so much closer to normal. I thought I was well, or very nearly so.
But I've been making excuses for years--too many years. I've always thought that once I get over this cold, or once I get things better organized, or once we get out of the infant stage, or once we get past this issue/illness/whatever, or once I start getting more sleep, or once I figure out how to tweak my diet just perfectly--then, THEN I'd be really well.
I'd have energy like a normal person, or very nearly so. My short-term memory and mental clarity would return. I wouldn't be in so much pain. I'd have the energy to carry out the joyful, creative, active, exuberant life I long for. I'd be healthy.
But 9 years later, I'm still sick most of the time; still debilitated to the point that I rarely go anywhere or do anything, because it taxes me too much. I can muster up the energy to appear normal for a while--sometimes for several hours, occasionally for a few days. But I pay for it later. The whole family pays for it.
As the spoon story says, borrowing spoons from tomorrow has its consequences. I'm learning it's not worth being mostly out of commission for the next few days or weeks to overdo it one day, even though I can push myself that way and appear to have normal energy and health for a little while.
Sometimes I wonder if it was really wise to get married and have kids. But my kids are such wonderful people. And, despite my health issues and despite the mistakes we make, I do think DH and I are pretty good parents. I can't look at my kids and wish they didn't exist. I just can't.
I also believe that God knows what He's doing, and that He has a plan somehow which includes me and DH having these kids and being, at least for the moment, in this situation. (I sure hope the plan includes changing the situation soon, though. Please, Lord?)
No, I can't regret getting married and having kids. Having my husband and kids in my life is the most wonderful, incredible thing I can imagine. I often wonder if they would have been better off with a different, healthier wife and mother--but with a different mother, these kids wouldn't exist.
However. Would it really be better for the kids not to be around me so much, as the doctor suggested? Would it? Is it bad for them to spend a lot of time with a person who is less than healthy, even though that illness is not contagious or harmful to others? That is one of the most heartrending questions I have ever had to contemplate.
All I ever really wanted (well, besides the numerous pipe dreams like being a veterinarian, public speaker, or writer) was to get married, have a lot of kids, homeschool them, and dedicate my life to raising them during their childhood years.
For this year I really think that we are best meeting their needs and giving them the best education, teacher/student ratio, customized curriculum, and spiritual/moral training possible by keeping them home. But next year? It's something we can only approach with as much thought, wisdom and prayer as possible.
But I don't want to just do what I want, or even what's best for me. We have to do what's best for them. Or at least the best we can manage under the circumstances.
The question is always, what is that?
Labels: at a loss, health issues, just life
Copyright 2009. All rights reserved.
Posted by purple_kangaroo at 9:19 PM[Permanent link]
10 Comments:
Oh PK, hon...hugs.
I have had many of the same thoughts about my kiddos and marriage re: my depression struggles. While they are episodic rather than chronic, as your illnesses are, I struggle in the valleys wondering if they would have been better off being born to another mother.
You are a great mother, illnesses or no - you wanted your children before they were conceived, your love knows no bounds (seriously, the stuff you went thru with Ebee was insane and you did it all and got educated in order to do so), etc.
I see what the doc is saying about sickness, but surely ya'll have friends with these kids they interact with at church, and they see that those parents are not all sick?
Trust in the Lord with all your heart and lean not on your own understanding, right? In other words, keep on keepin' on. You're doing great.
I just wish there was more rest for you.
(hugs)
Oh, I am sorry to read about your struggles right now. It's great to keep an open mind and ponder the advice given to you but, ultimately, you need to do what's right in your heart. I think doing otherwise may cause you stress of a different kind which can be just as draining.
I still keep feeling like a good osteopath or functional medicine professional might offer you more help. I know my "regular" MD ran all types of panels and tests on me and they came back normal but my osteopath used different, more in-depth tests, that revealed useful information. I found him through The Centers for Healthy Living: http://www.cfhll.com/.
You are all in my thoughts.
(((Hugs))) to you!
Two thoughts on your doctor's visit:
1) I would press a little and get a referral to the rheumatologist. Sure, there's no cure for your disease, but if rheumatology is the specialty your condition falls under, that would be your best chance to work with a medical professional who is the most familiar with fibromyalgia and likely have experience with multiple patients and treatment options, rather than just one case study of a previous patient with a similar symptom of fatigue.
2) Your kids are being raised in a wonderful, caring environment. They are learning to recognize that we all have different abilities--some people can't do what others can, and that is okay. Sometimes these changes are temporary and sometimes they are permanent. I really don't see how sending your children to school to be supervised by a teacher who has 20 other kids among whom she has to spread her concern is more beneficial ....
As to being around "healthy adults," I think the doctor's bias may have influenced that more than your case. Consider this--if your chronic condition was the loss of a limb, for example, would she tell you that you should send your kids to school so they could interact with other adults with four limbs? My guess is she really doesn't understand the homeschool paradigm and how it's really a whole lifestyle, not just what you do with your kids a few hours per day.
Now, all that to say, if you consider it carefully and prayerfully and decide that sending the kids to school away from home if the best way to go, that would be a perfectly fine choice. I just don't want you to focus on your perceived lack of parenting/teaching ability because you don't have the energy what many other people do.
You are a fantastic mother and you have done amazing things for your children's education. Whether you should continue in your current program or make changes for the next year is something only you and DH can decide, not a doctor who has met you only once!
Thanks for all the encouraging comments, everyone.
RR, thanks. You're right, my kids are around other families with healthy parents. They spend time with some of these other families apart from the scheduled activities, too, because we trade babysitting.
Tara, one of my best friends was trained as an osteopath before she decided to specialize in pediatric endochronology. I'll ask her about that.
Amy, that's a very interesting point about bias on the doctor's part. I'm not at all convinced it's harmful for kids to be around illness and different abilities. However, especially with my 7-year-old, she DOES have a tendency to worry a lot, and to worry about her own health and everyone else's. So that resonated a bit, which is what made it sting more I think.
No matter what we end up doing for school DH and I agree that we need to work hard to keep a sense of illness from pervading the household. I'm thinking there are probably other ways to do that may be better than quitting homeschooling.
My kids have DH and their friends' parents in their lives that are healthy, but both grandparents on DH's side, my mom, my sisters, and my close friend who spends the most time at our house all have some pretty severe health issues. So I think it is probably really important to make sure we're not allowing illness to become the kids' reality.
We need to think about all the various options and approaches for doing that.
Oh, and I did get a referral to a rheumatologist. My appointment is next month.
P_K, I am disturbed that this woman would think she could know all about you, your life, your parenting, and your children's lives after one fifteen minute appointment with you in her office.
I am sure that you and your husband have gone out of the way to ensure your children are very well cared for.
There is no such thing as a perfect parent and we all do our best with the tools we have in front of us.
I agree with Miranda, et al.
Seeding such fear and doubt in you was wrong and unjustified. Your children are shaped by far more than illness, and any extent to which it does influence their "reality" likewise affects a host of virtues such as love, compassion, thoughtfulness, determination, resilience, hope, etc.
How has your doctor weighed these myriad factors in your brief meeting? It is of course good to be aware of any influence but it seems that, in proper perspective, her comment was mere conjecture. Please do not let it steal your peace.
Be of good cheer, PK.
You know, if you raise your kids with only really nice people, they'll think that's reality, too..aargh! Stoopid doctor. Heaven forbid your children grow up with an extra helping of sensitivity or compassion for others. I can see where she touched on a big fear of yours, though. You're worried that your physical weakness is making you less of a good parent. But you know, you could have been an uber-healthy superMom and had an anvil fall on your head, Wile E. Coyote-style. It's too bad that God's plan doesn't fit into that medical doctor's tidily-ordered reality. You're a great mom...honestly, half the time I read your blog you "make me look bad"! (And inspire me to do better..just depends on what time of the month it is you ask!)
Sorry to rant, I don't like it when my friends are picked on when they're vulnerable. And is there anything at all I can do to help? For now you get a big (gentle!) hug from Seph and me in soCali ;)
You know... There are worse things than growing up being aware of illness.
Because of who you are and how you raise your kids they are going to be kind and compassionate. They are going to understand the innate ABILITY all people have even in the midst of illness. They are going to know that people dealing with all sorts of illness have incredible courage and strength and can do really amazing tasks like raising three happy, beautiful children.
I suppose your doc may have a point to a point. (;)) But I think that her emphasis on the negative of your situation is overstating things quite a bit.
And I think the overarching factor in your kids stability and happiness is your love and direction of them, and it's always been obvious here on your blog that you are an incredible mother.
No matter what you decide, I think you can rest assured that you are doing SO VERY WELL for your kids.
I see that what I was going to say has been said, but I'll say it again. Your sweet children are learning compassion and awareness. Many people think of any illness, disability, etc. as a great tragedy, and a different-ness that ought to be avoided. Accepting imperfection as a part of life is a good thing. (Try using a buzzword and tell the doc, if you see her again, that your children are learning tolerance. Maybe that will get through to her.) And seeing your determination and hope is also a good thing. Hugs!
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