Barometer - n. Definition: an instrument used to measure atmospheric pressure; changes in which can indicate high or low pressure fronts and related short-term weather predictions.
A barometer typically measures pressure by the effect it has on air, water, or mercury...or my sinuses.
I'm sure we've all heard the stereotype of the old lady who gives emphatic weather predictions based on an ache in her arm where she broke it 15 years ago in a fall and to this day uses it as a fool-proof meteorological tool (why aren't the news stations using her for their forecasts?). As some of us have gotten older, we may even have come to the depressing realization that this phenomena is based on reality. My whole family knows when the rain will hit based on our inflamed joints and I usually have a hunch when it might snow. But in the past year or so I've got a new one - weather fronts.
Last night was a particularly bad one. In fact, when it happened I wanted to get on here and write to you about it, but was too busy being incapacitated by pain (sorry y'all). I've had it happen a few times before, where I can literally feel a force pass from one side of my body to the other, bringing migrating sinus pressure with it, but those instances were usually more startling than painful. When last night's front came through suddenly, I had a pain start in the back left of my skull. The pain, which was in a very thin but intense line, began to spread toward the top of my head, so I gulped down a few ibuprofen as fast as I could and made my way back to the sofa. The ache was so intense and sudden that I actually began to check myself for stroke symptoms! I felt flushed and wobbly, and was so stricken by the sudden onset and intensity that I found speaking challenging. The line of pain continued to spread, and finally reached my face...sliding down my forehead, behind my left eye, and bottoming out in the sinus cavity below. Thankfully, I recognized the type of pressure-pain behind my eye and in the sinus space as the kind I get when there's a pressure change and realized that's what was behind the whole headache, and calmed down.
As relieved as I was that I wasn't having a stroke or seizure or something, my pain persisted. (As a side note, I find it interesting that this line of pain basically followed my "coup de sabre" - a linear area of scar tissue from scleroderma, often on the head and face.) I continued to have a severe headache with intense and focused pain, as well as sensitivity to light, nausea, and going from feeling hot to cold. I curled up (well, flopped over, really) on the sofa, slid a book over my face to block as much light as possible, and shivered until my husband came home. I wasn't able to get up and turn off the fan or even steal the blanket next to me from the dog and cover myself, let alone go to bed and lie in the dark there. When Shawn came home he immediately bundled me off to the bedroom, keeping the overhead light off of course.
This morning, feeling less than perfect but greatly improved, I began wondering if this is in fact a migraine headache. I've had similar symptoms before on scattered occassions, but never really pursued things with a doctor. I orignally dismissed this idea because I felt I knew what caused the onset of this headache and migraines are supposed to be a mystery, but then I realized maybe the pressure change triggered a migraine (as in, they are not mutually exclusive). I don't know if this is a legitimate medical analysis, but it sounds viable to me. So, I plan to pick up a small bottle of Exedrin the next time I see it, and try that if I get those symptoms again (intense pain, sensitivity to light, nausea, and maybe feeling hot or cold). We'll see.
In the meantime, I'll be happy to provide weather predictions to anyone in the area via text message for 50 cents per message...if you want temperature predictions from my mother's recently broken arm I'll include that too, but that'll cost you extra:) Maybe I'll seek a contract with AccuWeather...
September 30, 2009
September 23, 2009
Physical Manifestations of Emotional Stress
This is my attempt to take what could become a pity-fest and turn it into a productive blog post:) I'm feeling a lot of stress and anxiety, but I think if I write about it with you (I feel like I write WITH any readers, not TO you), I'll force myself to turn it around a bit.
I guess lets begin with what is stressing me out. For anyone who missed it, my parents have had some medical emergencies in the past two weeks. My mom fell and broke her arm, my dad's doctor 'accidentally' saw what seems to be kidney cancer (see previous post for a different take on this), and then my mom was admitted to the hospital with yet another cellulitis infection (she's home now). While I thought I was handling those things very calmly, it took me a few days to realize that I was actually pretty worked up under the surface.
Having been out of work for a few months (my old parttime job ended in June and I don't start my fulltime "career" job until October), I've had perhaps a little too much down time. Naturally, Shawn's been at work most days, and my two best friends are living in New York and North Carolina, so I've had a lot of time to myself. I tried to find projects for myself to occupy my time, but even so I ran out of valuable things to do...and found out that when I have too short a to-do list I don't get anything done at all. A few weeks - even a month or two - of a break would have been nice, but almost four months is a bit too much. So by now I've begun to go a little bit insane with cabin fever (without income I don't have the resources to do day trips or anything with all my spare time). I feel like I have a perpetual state of brain-fog (common among certain chronic illnesses, most notably Fibromyalgia). I might start off to do something only to forget what it was halfway across the room. In the end I give up and return to my seat at the computer, adding to a general sense of uselessness and hopelessness.
At the same time, we're now getting close to the start of my new job. All summer, work seemed so far away. Suddenly, it's almost here. I've begun receiving items in the mail from the company pertaining to my first days. Now all the things I have to do before then are building...I did as much clothes shopping as I could afford so far (I need professional clothing) but I still don't know what I'm going to wear my first day, I didn't lose any weight all summer despite my best intentions, the house is still just as disorganized as it was when I graduated, and above all I need to get myself in the most stable place medically as I can. What I mean by that is getting my internal clock set to fall asleep at night and wake up in the morning, as much energy as I can build, as hydrated as possible, and keep my blood pressure as regular as I can. If any of those things are off for my first day, I'll be behind the 8-ball from the get-go.
I know it sounds like I'm being dramatic, but with the excitement of the first few days my adrenaline will be pumping, and that stimulates my dysautonomia. If that happens, my blood pressure can drop and my heart rate spike, making me woozy at best and pass out at worst, I can quickly become severely dehydrated, get headaches and worse brain fog, and become exhausted. And that will make me far more susceptible to colds and viruses. These are very REAL physical ways my body reacts to excitement and stress. I don't know what to expect in many ways with this job, at least from a logistics and practical perspective, and that increases my anxiety. I know where I'll be going the first few days but not what to expect, and as fast as I begin to feel comfortable with getting there I'll be sent to a client site in a new location with a new team of coworkers, so everything I'm going through now I'll sort of be going through twice in perhaps a week's time. I'll have to make decisions about health insurance that I don't feel capable of figuring out, and I already have multiple doctor appointments scheduled for November that I'll have to work out with my coworkers...when I find out who they are and where we'll be working. I have to travel for a week of training also in November, and while I'm looking forward to that too it poses concerns about maintaining a stable health situation. Thinking about the post I wrote only earlier this month about being in a stable place that is sought by so many of my chronic illness peers, I can't help but face the uncertainty of my conditions which threatens that very achievement.
..................................................................................................
Sigh. I think I'm failing at bringing this to a more positive or at least proactive conclusion. Maybe I need to dwell on it just a little more, or see if I can resolve some of this brain fog. Ok please forgive me for this depressing post, and I'll try to come back soon and bring it full circle as I had intended. If it's really too depressing, read my previous post about God's grace, it's far more upbeat:) I guess today I really just needed to express my concerns and realize that I can't solve them right away.
WAIT! Maybe that's it! Maybe that's my proactive conclusion. Sometimes the best we can do is mourn over our problems, accept them for what they are, then try to move past them. Aha, brain fog - 0, Jen's reasoning ability -1 (but just barely). Ok guys. I'm still sorry this isn't as encouraging as I set out to make it, but at least there is a conclusion. I've enumerated my stressors and realize that I can't fix most of them right now. That's rather foreign to me, I'm a fixer by nature. I try to fix everything, solve every problem, all the time. I can't solve these. But accepting that helps free me from their clutches. What will be will be...if I do whatever I reasonably can to reduce risks, the rest is in God's hands and I have to let go. Wow, I don't think I've ever actually felt so free after saying that before.
God, here you go - I'll do my best and the rest is up to you. Thanks in advance.
I guess lets begin with what is stressing me out. For anyone who missed it, my parents have had some medical emergencies in the past two weeks. My mom fell and broke her arm, my dad's doctor 'accidentally' saw what seems to be kidney cancer (see previous post for a different take on this), and then my mom was admitted to the hospital with yet another cellulitis infection (she's home now). While I thought I was handling those things very calmly, it took me a few days to realize that I was actually pretty worked up under the surface.
Having been out of work for a few months (my old parttime job ended in June and I don't start my fulltime "career" job until October), I've had perhaps a little too much down time. Naturally, Shawn's been at work most days, and my two best friends are living in New York and North Carolina, so I've had a lot of time to myself. I tried to find projects for myself to occupy my time, but even so I ran out of valuable things to do...and found out that when I have too short a to-do list I don't get anything done at all. A few weeks - even a month or two - of a break would have been nice, but almost four months is a bit too much. So by now I've begun to go a little bit insane with cabin fever (without income I don't have the resources to do day trips or anything with all my spare time). I feel like I have a perpetual state of brain-fog (common among certain chronic illnesses, most notably Fibromyalgia). I might start off to do something only to forget what it was halfway across the room. In the end I give up and return to my seat at the computer, adding to a general sense of uselessness and hopelessness.
At the same time, we're now getting close to the start of my new job. All summer, work seemed so far away. Suddenly, it's almost here. I've begun receiving items in the mail from the company pertaining to my first days. Now all the things I have to do before then are building...I did as much clothes shopping as I could afford so far (I need professional clothing) but I still don't know what I'm going to wear my first day, I didn't lose any weight all summer despite my best intentions, the house is still just as disorganized as it was when I graduated, and above all I need to get myself in the most stable place medically as I can. What I mean by that is getting my internal clock set to fall asleep at night and wake up in the morning, as much energy as I can build, as hydrated as possible, and keep my blood pressure as regular as I can. If any of those things are off for my first day, I'll be behind the 8-ball from the get-go.
I know it sounds like I'm being dramatic, but with the excitement of the first few days my adrenaline will be pumping, and that stimulates my dysautonomia. If that happens, my blood pressure can drop and my heart rate spike, making me woozy at best and pass out at worst, I can quickly become severely dehydrated, get headaches and worse brain fog, and become exhausted. And that will make me far more susceptible to colds and viruses. These are very REAL physical ways my body reacts to excitement and stress. I don't know what to expect in many ways with this job, at least from a logistics and practical perspective, and that increases my anxiety. I know where I'll be going the first few days but not what to expect, and as fast as I begin to feel comfortable with getting there I'll be sent to a client site in a new location with a new team of coworkers, so everything I'm going through now I'll sort of be going through twice in perhaps a week's time. I'll have to make decisions about health insurance that I don't feel capable of figuring out, and I already have multiple doctor appointments scheduled for November that I'll have to work out with my coworkers...when I find out who they are and where we'll be working. I have to travel for a week of training also in November, and while I'm looking forward to that too it poses concerns about maintaining a stable health situation. Thinking about the post I wrote only earlier this month about being in a stable place that is sought by so many of my chronic illness peers, I can't help but face the uncertainty of my conditions which threatens that very achievement.
..................................................................................................
Sigh. I think I'm failing at bringing this to a more positive or at least proactive conclusion. Maybe I need to dwell on it just a little more, or see if I can resolve some of this brain fog. Ok please forgive me for this depressing post, and I'll try to come back soon and bring it full circle as I had intended. If it's really too depressing, read my previous post about God's grace, it's far more upbeat:) I guess today I really just needed to express my concerns and realize that I can't solve them right away.
WAIT! Maybe that's it! Maybe that's my proactive conclusion. Sometimes the best we can do is mourn over our problems, accept them for what they are, then try to move past them. Aha, brain fog - 0, Jen's reasoning ability -1 (but just barely). Ok guys. I'm still sorry this isn't as encouraging as I set out to make it, but at least there is a conclusion. I've enumerated my stressors and realize that I can't fix most of them right now. That's rather foreign to me, I'm a fixer by nature. I try to fix everything, solve every problem, all the time. I can't solve these. But accepting that helps free me from their clutches. What will be will be...if I do whatever I reasonably can to reduce risks, the rest is in God's hands and I have to let go. Wow, I don't think I've ever actually felt so free after saying that before.
God, here you go - I'll do my best and the rest is up to you. Thanks in advance.
September 21, 2009
Seeing God's Grace in Bad News
(I write as a Catholic, but with a broad religious education that helps me dialogue with other Christians, Jews, Muslims, and as many other denominations as I can. This post will resonate with most monotheists, but I think it could have value for anyone regardless of your proclaimed religious position.)
In Christianity, we refer to "The Good News". Jesus brought the Good News to us, that God loves us and we can be redeemed so we might join Him after our mortal lives are over. Mass and other religious services are opportunities to spread the Good News formally, and in our own lives we are encouraged to do the same through our actions. However, while God's nature is partly revealed to us in the Good News, that is not His exclusive residence. He reveals Himself to us everday in countless ways, through blessings and beauty, but also through pain and fear. And, it is in these ways that we can truly see His grace.
I mentioned a few times now, I think, that my dad most likely has kidney cancer. I say 'most likely' because so far doctors have told us they are 90% sure that's what they are seeing, and it won't be until his appointment in over a month with a nephrologist that they may say 100%. However for simplicity's sake in this post, let's just assume that's what it is. This small cancer 'spot' is possibly a budding tumor on my dad's kidney...in fact, it's so small I'd really just call it a cancer cell bundle.
A few weeks ago, my dad had an MRI done on his spine in relation to back and leg pain that has been plaguing him for quite some time. In reading the MRI, someone noticed a small spot on his kidney. Initially supposed to be a cyst, the doctor ordered multiple tests to be executed quickly. In short time, they ruled out a cyst, and began considering if it might be cancer. After more tests and discussions with doctors, my dad finally began getting a few answers...the 'spot' or 'cell bundle' is 15 millimeters in size and located on the end of his kidney. This is actually wonderful news - 15mm is INCREDIBLY small (go get a metric ruler and see for yourself...your ruler may not even show millimeters; if so, look at 1.5 centimeters, it's the same thing). Additionally, the location of the cells on the end of the kidney (as opposed to the middle) is great, because it means it is possible to deal with the cancer without destroying the entire organ. Assuming that it is cancer, it was caught extremely early. In fact, one doctor commented that it was the smallest spot of its kind he has ever seen!
As you may already see, there is a lot of good news here even in the face of something as negative as cancer. A 'cell bundle' of that size and location is so minor in relative terms that there are multiple treatment options, and plenty of time in which to carry them out. My dad's prognosis is great. However I see more than just this "Good News".
Think of how they caught this spot...on an MRI of his spine. A close friend of mine used to work as a tech for an MRI location, and has a lot of experience looking at these images. When I told him this story, he interupted me with surprise that it was noticed on the spine MRI. When I told him how small the spot was, he interupted again in shock and declared my father incredibly lucky. I totally agree. I don't know if you've had a chance to look at any MRI images, but they're pretty tricky to read in the first place. Obviously a trained technician or doctor has an easier time than I do, but even with the proper training it's not an easy task. The location of the kidneys relative to the way the spine is being imaged in an MRI usually makes them appear as a mass in the background, nothing more. To have been able to see the spot on the kidney that clearly is remarkable in itself, and frankly to have had someone reading the images pay enough attention to see and make note of the spot is almost unheard of. Normally, this kind of cancer would not be caught until it was much farther progressed. If someone were 'lucky', the tumor would have grown large enough to cause discomfort that required imaging tests, and if unlucky, they wouldn't look for and find cancer until the kidney and possibly other organs were being destroyed. My dad is more than lucky, he has experienced God's grace.
A number of people in my husband's family have been diagnosed with different cancers - breast, lymphoma, and stomach. Naturally, we've all been affected by their experiences. So far all are doing reasonably well, and I could go on about how they too have benefited from God's gift of grace. But I have to think my dad's case is the clearest example. He and my mom are not in any position to handle the types of treatments and situations my inlaws face, and I believe God knew that, and that's why He had the MRI show the kidney so well and the person reading it be so attentive.
So, in this instance of "bad news", of cancer in the family, of potential surgery, we have SEEN God's grace and lived His goodness. We all know He will carry us through our trials (whether we all believe it or not is another story), but this time we're also seeing Him rescue us before we get too far in.
Personally, I love the TV show "Roseanne", and just last night one of the most moving episodes was on. In this episode (one of the last ones in the entire series), Darlene gives birth prematurely to a baby girl at only 28 weeks into her pregnancy. Despite bringing in LITERALLY the top doctors in the world, nothing can be done to help the baby besides keeping her on a respirator in an incubator. Darlene and David decide their child "deserves the right to experience life not hooked up to all these machines". By unplugging them, they will give the baby a chance to survive on her own, or pass on. When the baby is disconnected from the machine, all the women in the family take turns holding her and telling her inspiring things. When it's Jackie's turn, she tells a story about when she was a little girl and started to fall out of the car as it sped down the highway. She recalls seeing the pavement rush closer to her face, when all of a sudden her mother grabbed her and pulled her back in the car, and she tells the baby that if she feels like she too is falling away, not to worry because they'll pull her back. In this life, as our souls speed down highways in the car that is our mortal body, we need not worry when we feel we're beginning to fall, because God will pull us back to Him every time.
In Christianity, we refer to "The Good News". Jesus brought the Good News to us, that God loves us and we can be redeemed so we might join Him after our mortal lives are over. Mass and other religious services are opportunities to spread the Good News formally, and in our own lives we are encouraged to do the same through our actions. However, while God's nature is partly revealed to us in the Good News, that is not His exclusive residence. He reveals Himself to us everday in countless ways, through blessings and beauty, but also through pain and fear. And, it is in these ways that we can truly see His grace.
I mentioned a few times now, I think, that my dad most likely has kidney cancer. I say 'most likely' because so far doctors have told us they are 90% sure that's what they are seeing, and it won't be until his appointment in over a month with a nephrologist that they may say 100%. However for simplicity's sake in this post, let's just assume that's what it is. This small cancer 'spot' is possibly a budding tumor on my dad's kidney...in fact, it's so small I'd really just call it a cancer cell bundle.
A few weeks ago, my dad had an MRI done on his spine in relation to back and leg pain that has been plaguing him for quite some time. In reading the MRI, someone noticed a small spot on his kidney. Initially supposed to be a cyst, the doctor ordered multiple tests to be executed quickly. In short time, they ruled out a cyst, and began considering if it might be cancer. After more tests and discussions with doctors, my dad finally began getting a few answers...the 'spot' or 'cell bundle' is 15 millimeters in size and located on the end of his kidney. This is actually wonderful news - 15mm is INCREDIBLY small (go get a metric ruler and see for yourself...your ruler may not even show millimeters; if so, look at 1.5 centimeters, it's the same thing). Additionally, the location of the cells on the end of the kidney (as opposed to the middle) is great, because it means it is possible to deal with the cancer without destroying the entire organ. Assuming that it is cancer, it was caught extremely early. In fact, one doctor commented that it was the smallest spot of its kind he has ever seen!
As you may already see, there is a lot of good news here even in the face of something as negative as cancer. A 'cell bundle' of that size and location is so minor in relative terms that there are multiple treatment options, and plenty of time in which to carry them out. My dad's prognosis is great. However I see more than just this "Good News".
Think of how they caught this spot...on an MRI of his spine. A close friend of mine used to work as a tech for an MRI location, and has a lot of experience looking at these images. When I told him this story, he interupted me with surprise that it was noticed on the spine MRI. When I told him how small the spot was, he interupted again in shock and declared my father incredibly lucky. I totally agree. I don't know if you've had a chance to look at any MRI images, but they're pretty tricky to read in the first place. Obviously a trained technician or doctor has an easier time than I do, but even with the proper training it's not an easy task. The location of the kidneys relative to the way the spine is being imaged in an MRI usually makes them appear as a mass in the background, nothing more. To have been able to see the spot on the kidney that clearly is remarkable in itself, and frankly to have had someone reading the images pay enough attention to see and make note of the spot is almost unheard of. Normally, this kind of cancer would not be caught until it was much farther progressed. If someone were 'lucky', the tumor would have grown large enough to cause discomfort that required imaging tests, and if unlucky, they wouldn't look for and find cancer until the kidney and possibly other organs were being destroyed. My dad is more than lucky, he has experienced God's grace.
A number of people in my husband's family have been diagnosed with different cancers - breast, lymphoma, and stomach. Naturally, we've all been affected by their experiences. So far all are doing reasonably well, and I could go on about how they too have benefited from God's gift of grace. But I have to think my dad's case is the clearest example. He and my mom are not in any position to handle the types of treatments and situations my inlaws face, and I believe God knew that, and that's why He had the MRI show the kidney so well and the person reading it be so attentive.
So, in this instance of "bad news", of cancer in the family, of potential surgery, we have SEEN God's grace and lived His goodness. We all know He will carry us through our trials (whether we all believe it or not is another story), but this time we're also seeing Him rescue us before we get too far in.
Personally, I love the TV show "Roseanne", and just last night one of the most moving episodes was on. In this episode (one of the last ones in the entire series), Darlene gives birth prematurely to a baby girl at only 28 weeks into her pregnancy. Despite bringing in LITERALLY the top doctors in the world, nothing can be done to help the baby besides keeping her on a respirator in an incubator. Darlene and David decide their child "deserves the right to experience life not hooked up to all these machines". By unplugging them, they will give the baby a chance to survive on her own, or pass on. When the baby is disconnected from the machine, all the women in the family take turns holding her and telling her inspiring things. When it's Jackie's turn, she tells a story about when she was a little girl and started to fall out of the car as it sped down the highway. She recalls seeing the pavement rush closer to her face, when all of a sudden her mother grabbed her and pulled her back in the car, and she tells the baby that if she feels like she too is falling away, not to worry because they'll pull her back. In this life, as our souls speed down highways in the car that is our mortal body, we need not worry when we feel we're beginning to fall, because God will pull us back to Him every time.
September 18, 2009
ReBlog: "How NOT to Be an Ally to Persons with Disabilities"
Click on the post title or copy and paste this url: http://moodybpgirl.wordpress.com/2009/09/14/how-not-to-be-an-ally-to-persons-with-disabilities/. Reposted with permission. "Moodybpgirl" made the following post for Invsible Illness Awareness Week this year on her blog titled The Other Side of Madness. The post focuses primarily on II sufferers with handicapped parking tags and how they are sometimes judged by others. While this is not an uncommon discussion topic in the II world, "Moodybpgirl" put a somewhat different view on the situation, and included ideas for good ways to handle the situation (again, proactive optimism!). Take a look, I think you'll like it:D
A Simple 5-Step Plan for Family Histories
In the past week and a half my family has had some medical nightmares pop up (not unusual for us). My mom fell and broke her arm, my dad's MRI of his back showed something on his kidney which they believe to be cancer, and then I spent 12 hours with my mom in the ER and being admitted to the hospital for yet another round of cellulitis in her legs. These things made me realize I've yet to write about the issue of family history.
What and Why?
Most people are familiar with this whole concept, but bear with me while I brief anyone who might be confused by what I mean. Especially in the world of chronic illnesses, genetics seem to play a role in the likelihood of an individual turning up with one or more certain illnesses. Sometimes these connections are not well understood - for example, some people link the chances of getting pregnant with twins to a family history of twins, but no one understands why or how this link may work. Others are more direct and are passed on in the same ways as hair color, height, and body shape Regardless, knowing, analyzing, and interpreting your family history can be immensely helpful in early detection of disease and illness. It will take a bit of time and may raise some concerns or questions, but you have to remember to look at it with hope: by taking the time now to find the concerns and questions, you give yourself (and others) the chance to plan for them BEFORE running into a crisis! A lot of conditions will be avoidable altogether as long as you know they're out there, and others can be caught much earlier than otherwise likely. For example, if we knew to look for Sjogren's when I was younger, we could have taken steps to protect my salivary glands and prevent the extensive tooth decay I deal with now. Since I have this information, at least I will be able to keep a better eye out for things like this with my children someday! The American dream - to make a brighter future for our children with all the information we can get now :).
(Sorry, I'm a business person and I think it shows in how I approach this issue. However, if you follow my framework I can promise you will be organized!)
Step 1: Research your family history
The point of this step is develop a list of conditions that appear in your bloodline. There are a few ways to organize this information. I think a good way is to list each condition that occured, who had it, and as many details as you can get (age at diagnosis, symptoms, progression of the illness). You are likely to find that a number of people in the family had the same or similar conditions, so keep track of each person it appeared in. In particular, doctors want to know if a blood sibling, parent, or grandparent had a condition, but if you see a trend like all your aunts and uncles had something, make note of that too. Obviously, people related only by marriage are important people but not relevent for this project. Remember to examine all parts of your family, both mother and father's sides (obviously, we're referring to biological parents) and each of their siblings and parents. I think a good way to make sure you didn't miss someone is to sketch out a family tree and list information by each person's name. This will also help you remember who's a blood relative and who was related only by marriage. Maybe you'll need to speak to every family member, but it is worth it. On the other hand, many families have a person who seems to know everything about everyone. My mother is one of those people. She can tell me who had what condition, when they were diagnosed, when and how they died (if relevant), what their symptoms were...I think she even knows what color socks they wore. If you have a person like this in your family, congrats, this step will be a snap. Well ok, it'll be easier. But don't forget the other side of your family!
Step 2: Organize the information
Once you have your family's history in front of you, it can seem confusing and overwhelming. If you don't organize it properly, you won't remember the important items when you need to (such as filling out a form for a doctor). Assuming you worked from a family tree or list of family members and now have information listed next to each person, I recommend reorganizing the information by condition. Read through the list of conditions or illnesses in your family, and make a new list of each one the first time it appears. Then, go back through the raw data and record the details, especially how the person was related to you. For example:
Step 3: Interpret the information
Once you have the data organized, you may be able to get even a little more information from it. As I said some conditions have a clear link...if you see someone in your family had colon cancer, you know you should get screenings early and often, or if a lot of people had heart disease you should be careful to keep your blood pressure in healthy limits. On the other hand, the presence of some conditions may not directly mean you are at a higher risk for them, but can show a "genetic predisposition". For example, many conditions in the autoimmune world are related. No one else in my family had Sjogren's (that we know of), but they did have other autoimmune conditions that should have indicated there was a good chance I'd have at least one.
Step 4: Effectively use and share your information
Now that you did all this work, at the very least you should take a copy of the information with you when you go to a new doctor to help you fill out paperwork. If your family history is extensive or you have a complex health situation, you may want to give a copy of your information to your doctor to keep in your records. If you have "mystery symptoms" you haven't been able to piece together, take your family history to your doctor and discuss it together to see if it reveals a new direction you should explore for answers. Or, even if you are unincumbered by medical problems now, take the chance on a routine check-up to review your family history and make sure you are taking any steps to keep yourself in good health (again, if you need additional cancer screenings, etc). Try to update the record as often as you find out new information. For example, as I mentioned above we just found out my dad probably has kidney cancer, so I need to make sure I add that to my family history. If you're a computer addict like me, you might want to make a spreadsheet (in Excel, perhaps) to keep all the information. This is an easy format to make updates or reorganize the information into a more usable form. It would also make sharing the information easier, as you can email the file to family.
A nice idea is to share the information with your family, particularly siblings (because if they are full-blood siblings, their family history is the same as yours). If you uncovered any noteworthy health trends or important items, you should share that part of the information with other blood relatives of the affected person (for example, if you found out your grandmother had breast cancer, make sure your aunts, uncles, and/or cousins on that side of the family are also aware). And in this step, be sure to include your own health history (when my mom found out she had the conditionat that leads to narrow-angle glaucoma, she emailed her sister so my aunt could get her eyes checked before it was too late). And of COURSE, be sure to share the information with your own children, and encourage (maybe help) them compile a history of their other parent's side of the family.
Step 5: Your health history and family planning
Your family history is part of your own health history in a way. It helps explain why you are the way you are (health-wise) and may project what you should look out for. It is also important to keep a record of your own health history...it seems it should be easy to remember everything that's happened to you, but that can quickly become a challenge. At the least, you should have a list of all diagnoses, surgeries and the year(s) they were performed, and recurring illnesses (such as bronchitis or infections). If you saw a question about something on one doctor's forms, you're likely to see that question again so make a note of your answer (maybe you couldn't remember if you had chicken pox, so make sure you find out and know the next time you fill out a form).
If your family and/or personal history is somewhat scary, you may want to consider the implications this might have for you as you plan a family (for those who have not yet started one but plan to). I know I've asked myself and my husband if it's fair to have a child, knowing what's running around in our genetic pool. Of course, for most people the issues aren't that dramatic; you probably don't need to question having a baby altogether (and for the record, I am planning to have babies, I just thought it through). But, you may want to see if you are at risk for things like gestational diabetes or trouble conceiving. The family history will be important to an OB-gyn who will know what could be related to birth defects (for example, two antibodies I have with my conditions can increase the risk my child might be born with a hole in his/her heart), and what steps can be taken to minimize the risk (be optimistic, many vitamins and even medications can help...for me, folic acid will help minimize the risk I mentioned!). The information in your family history can also help long after the conception/pregnancy/birth stage. To use myself as an example again, I know I'm going to be really careful about my children's sun exposure (it was my trigger), and be especially attuned to any complaints they have about joints, eyes, dry mouth, or other mystery symptoms.
Have hope, you've done a good thing!
After reading all that, I am a little worried that I've dragged you down into a deep depression. Please don't dispair! The point of this whole post and process is proactive hope. I call myself a "pragmatic optimist"...rather than idly wish for the best, I want to do whatever I can to make the best happen! THAT'S the whole point of a family history. With this information under your belt, you can take real steps toward better health and care for yourself, your family, and your children. THIS IS A GOOD THING. Even if you uncover upsetting items in your family history, you've taken a step toward making something better in the future. Feel good, you've done well!
What and Why?
Most people are familiar with this whole concept, but bear with me while I brief anyone who might be confused by what I mean. Especially in the world of chronic illnesses, genetics seem to play a role in the likelihood of an individual turning up with one or more certain illnesses. Sometimes these connections are not well understood - for example, some people link the chances of getting pregnant with twins to a family history of twins, but no one understands why or how this link may work. Others are more direct and are passed on in the same ways as hair color, height, and body shape Regardless, knowing, analyzing, and interpreting your family history can be immensely helpful in early detection of disease and illness. It will take a bit of time and may raise some concerns or questions, but you have to remember to look at it with hope: by taking the time now to find the concerns and questions, you give yourself (and others) the chance to plan for them BEFORE running into a crisis! A lot of conditions will be avoidable altogether as long as you know they're out there, and others can be caught much earlier than otherwise likely. For example, if we knew to look for Sjogren's when I was younger, we could have taken steps to protect my salivary glands and prevent the extensive tooth decay I deal with now. Since I have this information, at least I will be able to keep a better eye out for things like this with my children someday! The American dream - to make a brighter future for our children with all the information we can get now :).
(Sorry, I'm a business person and I think it shows in how I approach this issue. However, if you follow my framework I can promise you will be organized!)
Step 1: Research your family history
The point of this step is develop a list of conditions that appear in your bloodline. There are a few ways to organize this information. I think a good way is to list each condition that occured, who had it, and as many details as you can get (age at diagnosis, symptoms, progression of the illness). You are likely to find that a number of people in the family had the same or similar conditions, so keep track of each person it appeared in. In particular, doctors want to know if a blood sibling, parent, or grandparent had a condition, but if you see a trend like all your aunts and uncles had something, make note of that too. Obviously, people related only by marriage are important people but not relevent for this project. Remember to examine all parts of your family, both mother and father's sides (obviously, we're referring to biological parents) and each of their siblings and parents. I think a good way to make sure you didn't miss someone is to sketch out a family tree and list information by each person's name. This will also help you remember who's a blood relative and who was related only by marriage. Maybe you'll need to speak to every family member, but it is worth it. On the other hand, many families have a person who seems to know everything about everyone. My mother is one of those people. She can tell me who had what condition, when they were diagnosed, when and how they died (if relevant), what their symptoms were...I think she even knows what color socks they wore. If you have a person like this in your family, congrats, this step will be a snap. Well ok, it'll be easier. But don't forget the other side of your family!
Step 2: Organize the information
Once you have your family's history in front of you, it can seem confusing and overwhelming. If you don't organize it properly, you won't remember the important items when you need to (such as filling out a form for a doctor). Assuming you worked from a family tree or list of family members and now have information listed next to each person, I recommend reorganizing the information by condition. Read through the list of conditions or illnesses in your family, and make a new list of each one the first time it appears. Then, go back through the raw data and record the details, especially how the person was related to you. For example:
- Asthma - Dad, dad's brother Joe, grandfather (dad)
- Diabetes (type 2) - mom's sister Mary, grandfather (mom), and grandfather (dad)
- Breast cancer - mom's sister Ally (45), grandmother (dad) (58)
Step 3: Interpret the information
Once you have the data organized, you may be able to get even a little more information from it. As I said some conditions have a clear link...if you see someone in your family had colon cancer, you know you should get screenings early and often, or if a lot of people had heart disease you should be careful to keep your blood pressure in healthy limits. On the other hand, the presence of some conditions may not directly mean you are at a higher risk for them, but can show a "genetic predisposition". For example, many conditions in the autoimmune world are related. No one else in my family had Sjogren's (that we know of), but they did have other autoimmune conditions that should have indicated there was a good chance I'd have at least one.
Step 4: Effectively use and share your information
Now that you did all this work, at the very least you should take a copy of the information with you when you go to a new doctor to help you fill out paperwork. If your family history is extensive or you have a complex health situation, you may want to give a copy of your information to your doctor to keep in your records. If you have "mystery symptoms" you haven't been able to piece together, take your family history to your doctor and discuss it together to see if it reveals a new direction you should explore for answers. Or, even if you are unincumbered by medical problems now, take the chance on a routine check-up to review your family history and make sure you are taking any steps to keep yourself in good health (again, if you need additional cancer screenings, etc). Try to update the record as often as you find out new information. For example, as I mentioned above we just found out my dad probably has kidney cancer, so I need to make sure I add that to my family history. If you're a computer addict like me, you might want to make a spreadsheet (in Excel, perhaps) to keep all the information. This is an easy format to make updates or reorganize the information into a more usable form. It would also make sharing the information easier, as you can email the file to family.
A nice idea is to share the information with your family, particularly siblings (because if they are full-blood siblings, their family history is the same as yours). If you uncovered any noteworthy health trends or important items, you should share that part of the information with other blood relatives of the affected person (for example, if you found out your grandmother had breast cancer, make sure your aunts, uncles, and/or cousins on that side of the family are also aware). And in this step, be sure to include your own health history (when my mom found out she had the conditionat that leads to narrow-angle glaucoma, she emailed her sister so my aunt could get her eyes checked before it was too late). And of COURSE, be sure to share the information with your own children, and encourage (maybe help) them compile a history of their other parent's side of the family.
Step 5: Your health history and family planning
Your family history is part of your own health history in a way. It helps explain why you are the way you are (health-wise) and may project what you should look out for. It is also important to keep a record of your own health history...it seems it should be easy to remember everything that's happened to you, but that can quickly become a challenge. At the least, you should have a list of all diagnoses, surgeries and the year(s) they were performed, and recurring illnesses (such as bronchitis or infections). If you saw a question about something on one doctor's forms, you're likely to see that question again so make a note of your answer (maybe you couldn't remember if you had chicken pox, so make sure you find out and know the next time you fill out a form).
If your family and/or personal history is somewhat scary, you may want to consider the implications this might have for you as you plan a family (for those who have not yet started one but plan to). I know I've asked myself and my husband if it's fair to have a child, knowing what's running around in our genetic pool. Of course, for most people the issues aren't that dramatic; you probably don't need to question having a baby altogether (and for the record, I am planning to have babies, I just thought it through). But, you may want to see if you are at risk for things like gestational diabetes or trouble conceiving. The family history will be important to an OB-gyn who will know what could be related to birth defects (for example, two antibodies I have with my conditions can increase the risk my child might be born with a hole in his/her heart), and what steps can be taken to minimize the risk (be optimistic, many vitamins and even medications can help...for me, folic acid will help minimize the risk I mentioned!). The information in your family history can also help long after the conception/pregnancy/birth stage. To use myself as an example again, I know I'm going to be really careful about my children's sun exposure (it was my trigger), and be especially attuned to any complaints they have about joints, eyes, dry mouth, or other mystery symptoms.
Have hope, you've done a good thing!
After reading all that, I am a little worried that I've dragged you down into a deep depression. Please don't dispair! The point of this whole post and process is proactive hope. I call myself a "pragmatic optimist"...rather than idly wish for the best, I want to do whatever I can to make the best happen! THAT'S the whole point of a family history. With this information under your belt, you can take real steps toward better health and care for yourself, your family, and your children. THIS IS A GOOD THING. Even if you uncover upsetting items in your family history, you've taken a step toward making something better in the future. Feel good, you've done well!
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