For those who recognize, YES, those are Savage Garden lyrics. It was the only song I could think of that had the word CRASH in it, which refers to, you guessed it, the inevitable crash I experienced today after the wonderful productivity of yesterday.
I stayed up too late talking to my boyfriend and also my best friend, who's in India and so I have to work around her time zone whenever we talk. I miss her so much! Anyway, back to the point, I then slept til 3 pm, had ridiculous dreams, finally woke up... only to then take a nap around 6 pm and sleep through dinner til about 8. As my 14-year-old sister might say... fail. Major fail.
But, really, as crashes go, this was one of the best possible scenarios, and that's what I'm grateful for today. I got a lot done yesterday, so there wasn't too much pressure, and it snowed all day today, so it's not like I could have gone anywhere anyway. I have tomorrow to pick up the pieces, and I did manage to get some medical forms filled out and sent away, so that makes me feel better. I'm seeing a doctor on Tuesday who specializes in Lyme disease, and I finally applied to see this different doctor who specializes in chronic fatigue syndrome. My immunologist recommended I contact her, and my mom's been giggling all week at my excuse for not doing so-- that I'm too fatigued to email the chronic fatigue doctor!
I'm a praying sort, and my prayers are with all of you this week-- every person has their own burden to bear, and I know a lot of you are struggling under the weight of yours. I pray that God give you the strength to endure, that there is something to be gained from your situation, and that you are returned to a more hopeful and happy place in your life very, very soon!
Saturday, January 30, 2010
Friday, January 29, 2010
Busy, busy, busy!
That was for you, Jenny. :-P
In Methodist churches (and others I'm sure, but this is where I've experienced it), they have a time during the service where church members offer up prayers and praises to the congregation. I have a major praise today: I had a busy day today!
It started with a little mix-up at my doctor's office that caused me to get up at 8:30 this morning for an appointment that is now this Tuesday. Oops. (It was a problem with their automated reminder system-- it had misinformed me). I briefly considered going back to sleep because I was so tired, but instead, at my mom's nudging, I drank some coffee and got to work brainstorming and working on some journalism assignments. After that, I guess momentum kept me going, followed by adrenaline, because I managed to work all day today. I did homework, answered emails, made important phone calls, put away my laundry, and cleaned my room and bathroom. Seriously-- this was a busy day, I dare say even for a well person, and most DEFINITELY for a chronicall fatigued person. Of course, I had to take numerous rests, and I'm keeping my fingers crossed that I didn't push myself too hard and end up crashing tomorrow... but still, I got a lot done, and the peace of mind that produced might just be worth a potential crash tomorrow. Providing that it doesn't last more than just Saturday, that is.
I wish someone (with more experience in psychology than me) would write something on different personality types and chronic illness, though I suppose that it's really not easy no matter who you are. Anyway, I read a book a couple of months back called Do What You Are. It's fantastic, by the way, if you're still looking for that perfect career path. Anyway, they use the Meyer-Briggs personality test, and I’m an ENFP, which stands for enigmatic-intuitive-feeling-perceptive. The individual components of that aren’t really important for my point, but the overall description describes people with my personality type as enthusiastic “people-people” with boundless energy.
You’re probably starting to get my drift about now.
Of course, I WISH I had limitless energy. Doesn’t everyone? But it is an odd conundrum, isn’t it, when your personality would lead you to multitask and over-schedule in a way that is absolutely detrimental to one’s health?
Well, I mention it because, as I told a house guest tonight, I used my energy today to be “as type A as possible.” I framed pictures, I dusted surfaces, I reorganized closets, I folded my underwear… I got everything exactly the way I like it.
So I may be exhausted… but I know I’ll sleep well tonight in my oh-so-perfectly laid out, organized room. :)
Good night, everyone! Good luck with your own journeys, and thanks for reading my minor success story.
In Methodist churches (and others I'm sure, but this is where I've experienced it), they have a time during the service where church members offer up prayers and praises to the congregation. I have a major praise today: I had a busy day today!
It started with a little mix-up at my doctor's office that caused me to get up at 8:30 this morning for an appointment that is now this Tuesday. Oops. (It was a problem with their automated reminder system-- it had misinformed me). I briefly considered going back to sleep because I was so tired, but instead, at my mom's nudging, I drank some coffee and got to work brainstorming and working on some journalism assignments. After that, I guess momentum kept me going, followed by adrenaline, because I managed to work all day today. I did homework, answered emails, made important phone calls, put away my laundry, and cleaned my room and bathroom. Seriously-- this was a busy day, I dare say even for a well person, and most DEFINITELY for a chronicall fatigued person. Of course, I had to take numerous rests, and I'm keeping my fingers crossed that I didn't push myself too hard and end up crashing tomorrow... but still, I got a lot done, and the peace of mind that produced might just be worth a potential crash tomorrow. Providing that it doesn't last more than just Saturday, that is.
I wish someone (with more experience in psychology than me) would write something on different personality types and chronic illness, though I suppose that it's really not easy no matter who you are. Anyway, I read a book a couple of months back called Do What You Are. It's fantastic, by the way, if you're still looking for that perfect career path. Anyway, they use the Meyer-Briggs personality test, and I’m an ENFP, which stands for enigmatic-intuitive-feeling-perceptive. The individual components of that aren’t really important for my point, but the overall description describes people with my personality type as enthusiastic “people-people” with boundless energy.
You’re probably starting to get my drift about now.
Of course, I WISH I had limitless energy. Doesn’t everyone? But it is an odd conundrum, isn’t it, when your personality would lead you to multitask and over-schedule in a way that is absolutely detrimental to one’s health?
Well, I mention it because, as I told a house guest tonight, I used my energy today to be “as type A as possible.” I framed pictures, I dusted surfaces, I reorganized closets, I folded my underwear… I got everything exactly the way I like it.
So I may be exhausted… but I know I’ll sleep well tonight in my oh-so-perfectly laid out, organized room. :)
Good night, everyone! Good luck with your own journeys, and thanks for reading my minor success story.
Tuesday, January 19, 2010
Hate to blog and run...
...but it's 12:09 and this girl needs some sleep!
However, I wanted to stop by, mostly because I haven't blogged since the 1st of November! Don't worry, I haven't abandoned the project; life just got in the way. Between sickness, the holidays, and my computer being busted until today (hallelujah! I am truly a child of the digital age), there was simply no blogging to be had. Oh, I also attempted to take part in National Novel Writing Month during November, during which a bunch of fanatic writers attempt to write a whole novel (50,000 words or more) during November. Unfortunately, I didn't finish, but it was still good fun, and I have every intention of getting back to that poor, lonely, unfinished manuscript... any day now...
I've also been medically busy, per usual. I'm pursuing a doctor who specializes in chronic fatigue, chronic Lyme, and things like that; I'm looking into a possible Lyme diagnosis; and I've even been trying out a, get this, magnetic bed the past couple of weeks. I kid you not. I met a lady with a similar condition who has had fantastic results with it. It was worth a try, but I'm sad to report that I don't notice that much change. Actually, my sleep has been a little poorer because it's become a bit uncomfortable. Well, c'est la vie. Always worth a try! I'm still interested in alternative therapies, and I'm looking into finding a nutritionist to help me craft a better diet. I really don't eat that well, if I'm honest with myself, and I've always gotten away with it because I'm young and have a good metabolism. But there's so much more to good nutrition than weight management, and I really think I would benefit from learning more about eating the right foods to increase energy and overall health. So I'll let you all know how that goes.
I have way more to say, but I'm going to save it for later this week and just leave you all with my last big piece of news: I'm going back to school this semester! It's VERY part-time (2 classes, once a week each), and it's local, so I can continue to live at home, which tends to make things easier for me, having a built-in support system for when I relapse. I'm pretty nervous about it (and about paying it and all the extra anxiety-producers that go into schooling), but I'm hopeful too, and excited to be taking another step toward graduation, independence, adulthood...
I'm truly hoping that 2010 is my year. :)
What are you all hoping for in 2010?
However, I wanted to stop by, mostly because I haven't blogged since the 1st of November! Don't worry, I haven't abandoned the project; life just got in the way. Between sickness, the holidays, and my computer being busted until today (hallelujah! I am truly a child of the digital age), there was simply no blogging to be had. Oh, I also attempted to take part in National Novel Writing Month during November, during which a bunch of fanatic writers attempt to write a whole novel (50,000 words or more) during November. Unfortunately, I didn't finish, but it was still good fun, and I have every intention of getting back to that poor, lonely, unfinished manuscript... any day now...
I've also been medically busy, per usual. I'm pursuing a doctor who specializes in chronic fatigue, chronic Lyme, and things like that; I'm looking into a possible Lyme diagnosis; and I've even been trying out a, get this, magnetic bed the past couple of weeks. I kid you not. I met a lady with a similar condition who has had fantastic results with it. It was worth a try, but I'm sad to report that I don't notice that much change. Actually, my sleep has been a little poorer because it's become a bit uncomfortable. Well, c'est la vie. Always worth a try! I'm still interested in alternative therapies, and I'm looking into finding a nutritionist to help me craft a better diet. I really don't eat that well, if I'm honest with myself, and I've always gotten away with it because I'm young and have a good metabolism. But there's so much more to good nutrition than weight management, and I really think I would benefit from learning more about eating the right foods to increase energy and overall health. So I'll let you all know how that goes.
I have way more to say, but I'm going to save it for later this week and just leave you all with my last big piece of news: I'm going back to school this semester! It's VERY part-time (2 classes, once a week each), and it's local, so I can continue to live at home, which tends to make things easier for me, having a built-in support system for when I relapse. I'm pretty nervous about it (and about paying it and all the extra anxiety-producers that go into schooling), but I'm hopeful too, and excited to be taking another step toward graduation, independence, adulthood...
I'm truly hoping that 2010 is my year. :)
What are you all hoping for in 2010?
Sunday, November 1, 2009
You ARE Superman!
Also, as an upbeat note to counter my bad week... watch this funny halloween video. :) Happy halloween, everybody!
http://www.youtube.com/watch?v=Lfk2me7p9us
http://www.youtube.com/watch?v=Lfk2me7p9us
Promises, Promises...
Ok. In the spirit of this blog, I'm going to just cut through the niceties and get right to the point: I have had a terrible, awful, very bad week. Event-wise, it wasn't (as in, there were no events), which was part of the problem anyway. I don't think I'd win any "oh yeah? well, what about THIS..." type of contests with it, but to me, I really hit a new low this week. Or at least a low I haven't seen lately, so it feels new again.
I slept past noon everyday this week-- one particular day until 4:30. And usually this is a symptom of me giving into the fatigue and, while there was some of that, this week it felt physically IMPOSSIBLE to lift my head off of the pillow. I'd wake up earlier, and have that weird almost out-of-body type experience where you're brain is awake, but somehow your body hasn't gotten the message, and you think "OH NO! I'M PARALYZED!", but that feeling doesn't last long because within seconds your body wins control back over your eyelids and BOOM. You're alseep again.
(I hope Strunk & White don't ever read my blog).
So, I was tired all week, and dizzy, and my stomach felt bad, and it just felt like I would never feel well enough to get up, keep a job, and move out of my parents' house. I had to cancel with my friend K twice, and I really, really needed some blow-off-some-steam, girl-time. I didn't go to work. I couldn't go out for Halloween-- in fact, I didn't even get out to go to the Halloween store to buy the wig I needed to finish my costume. My boyfriend was supposed to come this weekend, but couldn't, and my letting all of these affect me resulted in a very cranky Robyn. Which means the rest of my family is sick of me too (though, the way I'm feeling right now, I'm sick of everybody).
So even though an awful lot of this is out of my control (new meds, etc.), when I honestly look back on the week, I can see that I didn't make much of a concerted effort either. I ate ok, but not great, and I didn't take control of my meals the way I keep saying I will. When insomnia hit, I'd try a little, then pull out the laptop and play a game or something to help with the boredom of a sleepless night. I didn't email my boss like I should have, and I haven't rescheduled some doctor's appointments that I needed to. Finally, my foot is almost healed now (yay!), and I haven't started walking and doing yoga again. I find I tend to be very all-0r-nothing in my life: if I can't do things perfectly (eat ALL healthy, planned meals that I cooked, practice yoga and RUN not walk everyday, work 40 hours a week, call my friends, and still be pleasant and keep my healthy habits...), then I don't want to do any of it. I throw in the towel. And that's just not going to work for me anymore.
So now that I've whined and complained, I'd like to do something about it. First, I want to list 5 things I'm thankful for this week to remind myself that it's not all bad! Then, I want to make 5 promises to myself of things that I will do differently this next week. So, without adieu,
I am so grateful for...
1. My friend, Keri. She brought me a goodie-bag this week after another canceled playdate just because she was thinking about me and wanted to help me feel better! She brought me some GREAT magazines (I'm a girly magazine enthusiast... can't be helped, haha), a chocolate bar, a furry purse for my Rachel Zoe outfit, some lotion and spritzers, and a simply gorgeous journal. Really, she's just too much. I don't know what I did to deserve such a great friend. On top of this act of kindness, I'm grateful for Keri because I don't know what I'd do without her right now. She understands living at home and living away and how frustrating the former can be when you crave the latter. She understands having a body that doesn't really behave as it should and having to try to "make it work." She really listens to me and she lets me return the favor, and for that I am really, really grateful... ESPECIALLY on weeks like this one!
2. Music. I sometimes forget its calming properties and I'm grateful there's so much of it out there to comfort a fatigued soul.
3. My family. Even when they totally drive me crazy, I really do enjoy being with them, and I'm grateful I have them. I may wish I lived elsewhere, but I really like hanging out with my parents and my sisters, and I hope that never changes.
4. My cats. They're so furry and Tigger will pretty much just collapse in your arms... cats just make me feel so much better. They're so ridiculously content, and it's hard to not catch a little bit of that feeling just watching them.
5. ChronicBabe.com... If you're a woman dealing with any sort of chronic issue (depression, fibromyalgia, epilepsy, etc.), you really should check out this site. It's so upbeat, and I really love the Editrix Jenni (from what she writes, that is)... she seems like a cool babe. When I'm off track, this is the first place I go for tips, advice, and comradery. It's just really nice to read about what really works for these young women who have similar issues to mine. Who better to advise than those who walk the walk everyday?
My Five Promises!
1. I promise to revamp my sleeping schedule. Bed at 11 pm, awake at 8 am. I'll probably start with 9 and work it back to 8, but I just have to regain control over my sleep. I promise to practice good sleep hygiene and to lay down in the dark after taking my ambien, instead of pulling out my laptop and giving the Ambien something to compete with.
2. I promise to look into healthy breakfasts this week. I can't do it all at once, and breakfast is the meal I have the most control over anyway. I tend to reach for sugary cereal and a glass of OJ, but I think I can do better, and put me on the right track for my day.
3. I promise to make my phone calls! Dentist, infectious disease specialist, aesthetician, regular doctor, GMU, WFU, work... I promise to make a list and follow through with my phone calls and emails.
4. I promise to go to church again. I will at least try it out for the next 2 weeks, and I will call the pastor's family to meet and talk. My spirit is tired and needs support and nourishment just as the body does, and I promise to better respect that.
5. I promise to go to work 3 times this week. I don't know how long I'll be able to stay for, but I want to show up at least 3 times: Monday, Wednesday, and Friday. Next week we'll see if we can increase it any more.
6. One more! I promise to start walking and practicing yoga again. It's perfect walking weather, so crisp, and I could really use some breathing exercises to get my life back in balance!
So there you have it: my plan of attack for this week. I've also been slacking on my daily health journal, where I record my sleep, what I ate, what I did, how I felt, etc. to look for patterns. I'm going to start keeping that again so that in a few weeks, I'll have concrete evidence whether this new medicine is helping or not. Whew. This is a lot, but I feel like I can. Please pray for energy and motivation for me this week to get myself back on track. Thanks everyone for reading! What do you do when you lose your edge and start to falter back into bad habits? How do you motivate yourself to do better when you don't feel any better?
*~Robyn
I slept past noon everyday this week-- one particular day until 4:30. And usually this is a symptom of me giving into the fatigue and, while there was some of that, this week it felt physically IMPOSSIBLE to lift my head off of the pillow. I'd wake up earlier, and have that weird almost out-of-body type experience where you're brain is awake, but somehow your body hasn't gotten the message, and you think "OH NO! I'M PARALYZED!", but that feeling doesn't last long because within seconds your body wins control back over your eyelids and BOOM. You're alseep again.
(I hope Strunk & White don't ever read my blog).
So, I was tired all week, and dizzy, and my stomach felt bad, and it just felt like I would never feel well enough to get up, keep a job, and move out of my parents' house. I had to cancel with my friend K twice, and I really, really needed some blow-off-some-steam, girl-time. I didn't go to work. I couldn't go out for Halloween-- in fact, I didn't even get out to go to the Halloween store to buy the wig I needed to finish my costume. My boyfriend was supposed to come this weekend, but couldn't, and my letting all of these affect me resulted in a very cranky Robyn. Which means the rest of my family is sick of me too (though, the way I'm feeling right now, I'm sick of everybody).
So even though an awful lot of this is out of my control (new meds, etc.), when I honestly look back on the week, I can see that I didn't make much of a concerted effort either. I ate ok, but not great, and I didn't take control of my meals the way I keep saying I will. When insomnia hit, I'd try a little, then pull out the laptop and play a game or something to help with the boredom of a sleepless night. I didn't email my boss like I should have, and I haven't rescheduled some doctor's appointments that I needed to. Finally, my foot is almost healed now (yay!), and I haven't started walking and doing yoga again. I find I tend to be very all-0r-nothing in my life: if I can't do things perfectly (eat ALL healthy, planned meals that I cooked, practice yoga and RUN not walk everyday, work 40 hours a week, call my friends, and still be pleasant and keep my healthy habits...), then I don't want to do any of it. I throw in the towel. And that's just not going to work for me anymore.
So now that I've whined and complained, I'd like to do something about it. First, I want to list 5 things I'm thankful for this week to remind myself that it's not all bad! Then, I want to make 5 promises to myself of things that I will do differently this next week. So, without adieu,
I am so grateful for...
1. My friend, Keri. She brought me a goodie-bag this week after another canceled playdate just because she was thinking about me and wanted to help me feel better! She brought me some GREAT magazines (I'm a girly magazine enthusiast... can't be helped, haha), a chocolate bar, a furry purse for my Rachel Zoe outfit, some lotion and spritzers, and a simply gorgeous journal. Really, she's just too much. I don't know what I did to deserve such a great friend. On top of this act of kindness, I'm grateful for Keri because I don't know what I'd do without her right now. She understands living at home and living away and how frustrating the former can be when you crave the latter. She understands having a body that doesn't really behave as it should and having to try to "make it work." She really listens to me and she lets me return the favor, and for that I am really, really grateful... ESPECIALLY on weeks like this one!
2. Music. I sometimes forget its calming properties and I'm grateful there's so much of it out there to comfort a fatigued soul.
3. My family. Even when they totally drive me crazy, I really do enjoy being with them, and I'm grateful I have them. I may wish I lived elsewhere, but I really like hanging out with my parents and my sisters, and I hope that never changes.
4. My cats. They're so furry and Tigger will pretty much just collapse in your arms... cats just make me feel so much better. They're so ridiculously content, and it's hard to not catch a little bit of that feeling just watching them.
5. ChronicBabe.com... If you're a woman dealing with any sort of chronic issue (depression, fibromyalgia, epilepsy, etc.), you really should check out this site. It's so upbeat, and I really love the Editrix Jenni (from what she writes, that is)... she seems like a cool babe. When I'm off track, this is the first place I go for tips, advice, and comradery. It's just really nice to read about what really works for these young women who have similar issues to mine. Who better to advise than those who walk the walk everyday?
My Five Promises!
1. I promise to revamp my sleeping schedule. Bed at 11 pm, awake at 8 am. I'll probably start with 9 and work it back to 8, but I just have to regain control over my sleep. I promise to practice good sleep hygiene and to lay down in the dark after taking my ambien, instead of pulling out my laptop and giving the Ambien something to compete with.
2. I promise to look into healthy breakfasts this week. I can't do it all at once, and breakfast is the meal I have the most control over anyway. I tend to reach for sugary cereal and a glass of OJ, but I think I can do better, and put me on the right track for my day.
3. I promise to make my phone calls! Dentist, infectious disease specialist, aesthetician, regular doctor, GMU, WFU, work... I promise to make a list and follow through with my phone calls and emails.
4. I promise to go to church again. I will at least try it out for the next 2 weeks, and I will call the pastor's family to meet and talk. My spirit is tired and needs support and nourishment just as the body does, and I promise to better respect that.
5. I promise to go to work 3 times this week. I don't know how long I'll be able to stay for, but I want to show up at least 3 times: Monday, Wednesday, and Friday. Next week we'll see if we can increase it any more.
6. One more! I promise to start walking and practicing yoga again. It's perfect walking weather, so crisp, and I could really use some breathing exercises to get my life back in balance!
So there you have it: my plan of attack for this week. I've also been slacking on my daily health journal, where I record my sleep, what I ate, what I did, how I felt, etc. to look for patterns. I'm going to start keeping that again so that in a few weeks, I'll have concrete evidence whether this new medicine is helping or not. Whew. This is a lot, but I feel like I can. Please pray for energy and motivation for me this week to get myself back on track. Thanks everyone for reading! What do you do when you lose your edge and start to falter back into bad habits? How do you motivate yourself to do better when you don't feel any better?
*~Robyn
Monday, October 26, 2009
Medical Mayhem Week
No, this isn't an actual or blogger-invented holiday. It's just what happens when you schedule three doctors appointments in a row, and the first goes terribly wrong.
Doctor # 1:
Last Wednesday, I was scheduled to see an Infectious Disease specialist in MD. He was supposed to be able to tell whether my Eppstein Barr levels point to chronic mono, and whether that means he could diagnose me with chronic fatigue syndrome/ME. I had typed out four pages of medical information on me-- what drugs I take and in what doses, my health history, and my symptoms in order of severity, among other stuff. I had even printed out a copy of the Canadian handbook for diagnosing ME/CFS, since it's just way better than the CDC's. I was ready man. Next stop: diagnosis!
Only, my mom and I didn't quite realize how much time it would take to get to the next stop when driving through Washington, DC AND Baltimore rush-hour traffic. Ugh. Ugh, ugh, ugh, ugh. It was not pretty.
Then there was the fun phone mix-up. When I realized we were going to be late, I called to tell the doctor's office, in case they told me to turn around, that they couldn't see us today. Some apathetic lady said she'd pass on the message. An hour later, as we were literally exiting onto the road that the clinic was on, another lady called me and said, "Excuse me, miss? This is Doctor Hudgen's office. We've never heard of you, but we got a message that you're going to be late for an appointment?..."
AWESOME.
So I made a few more calls, managed to get in touch with the RIGHT office this time, and told a snarky lady we'll call Dede what happened and how we were pulling in right now. She says ok, hangs up, then immediately calls me back (?) to tell me that the doctor can't see me anymore.
I'm going to back up here. I get it. I know we're late. I know it's not totally our fault we're late, and it's definitely not our fault that we didn't contact the office in time (that would be the building director's mea culpa). But, I also realize that schedules are schedules, and I understand that the doctor has other commitments. So, I get both sides of the story, but that doesn't make it any less frustrating. We drove TWO and a HALF HOURS to get there. I want a diagnosis!
We ended up getting the name for an infectious disease specialist in our area (Annandale! Woop woop!), but then found out that I need to see not just any old infectious disease specialist (as if that isn't specialized enough), but a specific kind that actually believes there's a link between the Eppstein Barr virus and ME/CFS. In other words, after swearing never to drive back to MD again... I have to call and make another appointment with MD. And it took me two months to get the one I just barely missed!
*shakes it off*
Doctor #2:
Much less traumatic and much more mundane, my second appointment was with my orthopedic, Dr. Robert Redford.
(No, that's not his real name, but that's who he looks like, so that's now his fun code name. Really, I'm not into older guys, like not AT ALL, but my orthopedic is a very handsome older man. It's impossible to deny).
Basically, things looked good. I could see my bone regrowth and I'm allowed to wear shoes, plural, again, but only if they're sneakers or very stiff-soled. He made it very clear that I was not to wear "little slippers" (a.k.a. ballet flats, which basically make up my whole shoe wardrobe) until my foot was completely healed. Although he probably doesn't really support that footwear choice even then, but at that point it becomes my problem again. Besides, we're entering boot season, so that should allow ample time for my toesy to heal.
Doctor #3:
I loved this doctor, although I'm still a bit undecided on whether this is the best place for me to be. I went to her as an endocronologist/thyroid specialist, but she's an internist as well, so who knows? Maybe she could be my full-time doc? Too soon to tell. But she checks email, is easy to get in touch with, and she actually listens and spends time with me. She looked at all my charts and gave me some things to try while we wait for other tests to come back. I'm now taking a probiotic with lunch or dinner every day, and though I've only done it twice, it seems to help with my GI issues. I'm also on some anti-thyroid drugs... I'm taking half a pill at night until about Wednesday, when I can start taking a full pill every night. It'll be a couple of weeks until we know if that actually helps. We're trying that because the beginning of my ME/CFS problems began with a bad bout of acute thyroiditis. I think I had mild issues before, but that thyroiditis really took things up a notch. So, Dr. Goodbar (again, made up) and I hypothesized that the disease could have knocked things out of whack hormonally, and so it couldn't hurt to just test and see if adjusting the thyroid hormones made a difference in my symptoms. So, I'm a bit of a guinea pig right now.
I haven't quite recovered from this week's ridiculousness, but I'm getting there. By Friday, I was sick again; and by Saturday, I was both sick and experiencing a lot of dizziness, which I suspect might be from the new anti-thyroid drugs. I don't mind waiting out the new symptoms, but I do wish I had planned it a little better. I had to miss my 5-year high school reunion and, psuedo-masochistic reasonings unknown, I was really looking forward to going to that. I've lost touch with so many people from my lack of energy for keeping in touch, and it's recently become really important to me to undo some of the damage I've done. Some friends just won't understand why my life is how it is right now, and I'm coming to terms with that, but I've discovered that most people, if given a chance, will pleasantly surprise me. I am lucky to have been blessed with good friends... I just wish more of them lived nearer to me!
Well, this post has become rather long. Thanks for reading, and I hope that life brings you joy in all its many forms. Ciao~
Doctor # 1:
Last Wednesday, I was scheduled to see an Infectious Disease specialist in MD. He was supposed to be able to tell whether my Eppstein Barr levels point to chronic mono, and whether that means he could diagnose me with chronic fatigue syndrome/ME. I had typed out four pages of medical information on me-- what drugs I take and in what doses, my health history, and my symptoms in order of severity, among other stuff. I had even printed out a copy of the Canadian handbook for diagnosing ME/CFS, since it's just way better than the CDC's. I was ready man. Next stop: diagnosis!
Only, my mom and I didn't quite realize how much time it would take to get to the next stop when driving through Washington, DC AND Baltimore rush-hour traffic. Ugh. Ugh, ugh, ugh, ugh. It was not pretty.
Then there was the fun phone mix-up. When I realized we were going to be late, I called to tell the doctor's office, in case they told me to turn around, that they couldn't see us today. Some apathetic lady said she'd pass on the message. An hour later, as we were literally exiting onto the road that the clinic was on, another lady called me and said, "Excuse me, miss? This is Doctor Hudgen's office. We've never heard of you, but we got a message that you're going to be late for an appointment?..."
AWESOME.
So I made a few more calls, managed to get in touch with the RIGHT office this time, and told a snarky lady we'll call Dede what happened and how we were pulling in right now. She says ok, hangs up, then immediately calls me back (?) to tell me that the doctor can't see me anymore.
I'm going to back up here. I get it. I know we're late. I know it's not totally our fault we're late, and it's definitely not our fault that we didn't contact the office in time (that would be the building director's mea culpa). But, I also realize that schedules are schedules, and I understand that the doctor has other commitments. So, I get both sides of the story, but that doesn't make it any less frustrating. We drove TWO and a HALF HOURS to get there. I want a diagnosis!
We ended up getting the name for an infectious disease specialist in our area (Annandale! Woop woop!), but then found out that I need to see not just any old infectious disease specialist (as if that isn't specialized enough), but a specific kind that actually believes there's a link between the Eppstein Barr virus and ME/CFS. In other words, after swearing never to drive back to MD again... I have to call and make another appointment with MD. And it took me two months to get the one I just barely missed!
*shakes it off*
Doctor #2:
Much less traumatic and much more mundane, my second appointment was with my orthopedic, Dr. Robert Redford.
(No, that's not his real name, but that's who he looks like, so that's now his fun code name. Really, I'm not into older guys, like not AT ALL, but my orthopedic is a very handsome older man. It's impossible to deny).
Basically, things looked good. I could see my bone regrowth and I'm allowed to wear shoes, plural, again, but only if they're sneakers or very stiff-soled. He made it very clear that I was not to wear "little slippers" (a.k.a. ballet flats, which basically make up my whole shoe wardrobe) until my foot was completely healed. Although he probably doesn't really support that footwear choice even then, but at that point it becomes my problem again. Besides, we're entering boot season, so that should allow ample time for my toesy to heal.
Doctor #3:
I loved this doctor, although I'm still a bit undecided on whether this is the best place for me to be. I went to her as an endocronologist/thyroid specialist, but she's an internist as well, so who knows? Maybe she could be my full-time doc? Too soon to tell. But she checks email, is easy to get in touch with, and she actually listens and spends time with me. She looked at all my charts and gave me some things to try while we wait for other tests to come back. I'm now taking a probiotic with lunch or dinner every day, and though I've only done it twice, it seems to help with my GI issues. I'm also on some anti-thyroid drugs... I'm taking half a pill at night until about Wednesday, when I can start taking a full pill every night. It'll be a couple of weeks until we know if that actually helps. We're trying that because the beginning of my ME/CFS problems began with a bad bout of acute thyroiditis. I think I had mild issues before, but that thyroiditis really took things up a notch. So, Dr. Goodbar (again, made up) and I hypothesized that the disease could have knocked things out of whack hormonally, and so it couldn't hurt to just test and see if adjusting the thyroid hormones made a difference in my symptoms. So, I'm a bit of a guinea pig right now.
I haven't quite recovered from this week's ridiculousness, but I'm getting there. By Friday, I was sick again; and by Saturday, I was both sick and experiencing a lot of dizziness, which I suspect might be from the new anti-thyroid drugs. I don't mind waiting out the new symptoms, but I do wish I had planned it a little better. I had to miss my 5-year high school reunion and, psuedo-masochistic reasonings unknown, I was really looking forward to going to that. I've lost touch with so many people from my lack of energy for keeping in touch, and it's recently become really important to me to undo some of the damage I've done. Some friends just won't understand why my life is how it is right now, and I'm coming to terms with that, but I've discovered that most people, if given a chance, will pleasantly surprise me. I am lucky to have been blessed with good friends... I just wish more of them lived nearer to me!
Well, this post has become rather long. Thanks for reading, and I hope that life brings you joy in all its many forms. Ciao~
Saturday, October 10, 2009
Some interesting CFS news, stolen from another blogger ;-)
Virus Linked to Chronic Fatigue Syndrome
Hmm. I wonder if you can ask to be tested for this retrovirus in your everyday LAbcorp? I'm headed there on Monday for my final round of lupus testing (though I'm pretty sure it will be negative-- I'm like 90% convinved I have CFIDS and my doctors are just being really thorough).
They also suggest antiviral drugs as treatment, similar to what HIV-patients would take. I'm an English-major, so excuse me for any gaps in the science, but it sounds like an interesting proposition. Think they'll have them out in time for me to go back for Wake's spring semester? *fingers crossed*
Hmm. I wonder if you can ask to be tested for this retrovirus in your everyday LAbcorp? I'm headed there on Monday for my final round of lupus testing (though I'm pretty sure it will be negative-- I'm like 90% convinved I have CFIDS and my doctors are just being really thorough).
They also suggest antiviral drugs as treatment, similar to what HIV-patients would take. I'm an English-major, so excuse me for any gaps in the science, but it sounds like an interesting proposition. Think they'll have them out in time for me to go back for Wake's spring semester? *fingers crossed*
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