Things are tough right now. This "illness," if you want to call it that, has taken over every aspect of my life. It has turned me into someone I don't like very much, someone I never was before. It's one thing to hate what is happening to you, but a much worse thing to hate, to loathe, who you are.
What started as a headache that wouldn't go away has turned in to so much more. The pain is no longer limited to my head but grips my entire body and mind with a force like no other. I believe it is this pain that has changed me.
I used to be silly and while I was very intelligent, I sometimes fit the dumb blonde stereotype. I used to be hopelessly romantic, fantasizing about the perfect marriage and family I would one day have. I used to be productive. In college I earned a degree in Biology and Chemistry while working three jobs, playing soccer, volunteering and having the time of my life.
Now the laugh-til-you-cry-and-wheeze sessions are few and far between. Instead of feeling passion and excitement, I have feelings of overwhelming rage and despair. It took me all week to find a videographer for our wedding and today, everything fell apart because I couldn't decide what kind of dishes I want to register for.
What I hate even more about this new me is how others are affected. My poor but amazing fiance walks on egg shells because he never knows what mood I'm going to be in, or when it's going to change. My body hurts so bad that is almost impossible to snuggle or get a hug. The fact that I am so physically and emotionally unavailable, to anyone, makes me cry. I'm also very critical and unaccepting of change. The ability to sit back, relax, and let things happen is lost on me.
Then there is the fear. The fear that I won't get better, that I will always be crabby and sad, and that I will end up alone...or worse. I'm actually afraid to go to bed because I never know how I'm going to feel the next day. I'm afraid to make any sort of commitment because there are pretty good odds that I won't be able to keep it. And I'm afraid to share my feelings with my loved ones because I don't want to overwhelm or scare them. I'm a closed book and I hate it.
I know I'm relatively young and still have several baby-making years ahead of me but I'm afraid that I'll never be well enough to take care of a child. That I'll never be able to be a mother, to carry a child, something I so desperately want. If I can't be a mom, I don't want to be here.
Ironically, I'm also very afraid of getting better. And I'm scared that this fear is holding me back. What if all of...this...is all in my head? Even though I go to more doctor's appointments in a week than some people do in a lifetime, what if I'm psychologically causing the pain? Getting better means re-entering the real world, finding a job, keeping a job, and giving up my disability. What happens if I declare that I'm cured, start over, and end up with a never-ending headache again? What other employer is going to pay me two thirds of my salary until age 67 if I become unable to work?
So, yes, I'm scared. I currently live in a sad world and am desperately afraid it will never change. The only thing keeping me going is the small hope that it will.
Saturday, September 25, 2010
Friday, September 17, 2010
Just What the Doctor Ordered
Actually, what the doctor ordered is sleep. And I'm not getting any! I know there are plenty of you mom's out there not getting any either, but at least you have a cute bundle of joy to cuddle. My cat won't even get up and hang out with me!
I participated in a sleep study about a month ago which gave, I thought, promising results. It showed that even though I'm asleep (that's back when I could sleep, obviously), my brain isn't. I'm not getting any deep sleep (stage 3 and 4) which are the stages when the brain rejuvenates itself, when all the fuel (hormones, neurotransmitters like serotonin and noradrenaline, and a lot of other really important stuff) is produced. This lack of deep sleep partially explains why I'm so tired ALL the time, why I am in so much pain, and why I have so much mental fog.
The short of it is that all day and all night, my brain runs on high. Literally. Almost all my brain activity is beta and high beta frequencies. That means my brain is constantly trying to process...everything. What has happened as a result of this constant processing is my brain has functionally lost the ability to relax. Because it never runs on the low wave frequencies, alpha and delta, it's always working.
This constant "work" by my brain is a result of over-stimulation which, in this case, equals pain. My brain has been so overwhelmed with pain signals (which turn those high waves on) that that's all it knows. If all the pain was gone tomorrow, my brain would not know what do to or how to function. It would not believe that the pain was not there. Weird, I know.
So, in order to help get better, more productive (or less productive, depending on how you look at it) sleep, I went to a sleep specialist. His first approach was medicine with the idea being that if we can get some serotonin and noradrenaline in my brain, it will figure out how to make more while I'm asleep. Kinda of like seeding the reaction, for you chemistry buffs out there. But now I can't even fall asleep! I've got all this medicine that's supposed to cause drowsiness, ease pain and slow me down. It doesn't even phase me. I've tried other things, too, like a glass of red wine before bed or a bowl of cereal (Honey Nut Cheerios used to put me right to sleep!), a hot shower and still, no sleep.
Now I'm tired mentally and physically and wound up like a very tight spring about to snap. My muscles are so tight they spasm. Sometimes uncontrollably. It's only been two weeks since I saw the sleep doctor so I'm not giving up yet. But can't a girl get a break?!? I could really use one. And some sleep.
I participated in a sleep study about a month ago which gave, I thought, promising results. It showed that even though I'm asleep (that's back when I could sleep, obviously), my brain isn't. I'm not getting any deep sleep (stage 3 and 4) which are the stages when the brain rejuvenates itself, when all the fuel (hormones, neurotransmitters like serotonin and noradrenaline, and a lot of other really important stuff) is produced. This lack of deep sleep partially explains why I'm so tired ALL the time, why I am in so much pain, and why I have so much mental fog.
The short of it is that all day and all night, my brain runs on high. Literally. Almost all my brain activity is beta and high beta frequencies. That means my brain is constantly trying to process...everything. What has happened as a result of this constant processing is my brain has functionally lost the ability to relax. Because it never runs on the low wave frequencies, alpha and delta, it's always working.
This constant "work" by my brain is a result of over-stimulation which, in this case, equals pain. My brain has been so overwhelmed with pain signals (which turn those high waves on) that that's all it knows. If all the pain was gone tomorrow, my brain would not know what do to or how to function. It would not believe that the pain was not there. Weird, I know.
So, in order to help get better, more productive (or less productive, depending on how you look at it) sleep, I went to a sleep specialist. His first approach was medicine with the idea being that if we can get some serotonin and noradrenaline in my brain, it will figure out how to make more while I'm asleep. Kinda of like seeding the reaction, for you chemistry buffs out there. But now I can't even fall asleep! I've got all this medicine that's supposed to cause drowsiness, ease pain and slow me down. It doesn't even phase me. I've tried other things, too, like a glass of red wine before bed or a bowl of cereal (Honey Nut Cheerios used to put me right to sleep!), a hot shower and still, no sleep.
Now I'm tired mentally and physically and wound up like a very tight spring about to snap. My muscles are so tight they spasm. Sometimes uncontrollably. It's only been two weeks since I saw the sleep doctor so I'm not giving up yet. But can't a girl get a break?!? I could really use one. And some sleep.
Wednesday, September 1, 2010
The Patient Patient
As someone seeking extensive medical treatment, I do a lot of waiting. I wait for test results, I wait on insurance authorizations and reimbursements, I wait to see new doctors, I wait for treatments and therapies to work and I'm waiting to get better. Because I believe that God has a plan that requires all this waiting, I try to sit back and let things happen in their own time. But I'm ready already!!
This morning I waited (very patiently I must say since I had a level 4 (out of 5) migraine) on my primary care physician who I see about every 4-6 weeks. While he is a good doctor, he could use a refresher course in professionalism. A regular follow-up appointment can take 3 hours and that's only counting 30 minutes of doctor-patient time, at most! Today I was in the exam room by 8:02 for my 8:00 appointment which was the first appointment of the day. And then I waited. And waited. I finally heard the doctor ARRIVE at 8:25. Once he came in to the room, I had to wait a good ten minutes for him to review my file before any conversation took place. I understand that doctors are very busy and often get off-schedule and I actually appreciate a doctor that sticks around to answer all my questions. But what is the point of scheduling an 8 o'clock appointment if the actual start time is 8:30? Why should I be on time and organized if the doctor is not (and he never is!)? Why do I give him (and others) my time and money, only to wait for them to get around to treating me?
Being sick (or I guess "not well" in my case) is expensive to say the least. I'm blessed to have worked for a company that provides me with long term disability for as long as I need it and offers great medical coverage. However, keeping up with insurance--who owes who and how much--is a full time job. It seems logical that a procedure or appointment that is 100% "eligible" when asking ahead of time should be easily billed and payed in a timely manner afterward. What I have learned is that NOTHING is logical when it comes to insurance. I'm literally waiting on several thousand dollars of reimbursement. Just last week I got an explanation of benefits that was not paid because the doctor (a different one this time) did not put the patient ID number on any of the bills. So, while I wait for the bills to get corrected, resubmitted and paid, that part of my treatment is on hold. I'm worried that this break will not only delay my recovery but actually cause me to regress. All I can do is wait and see.
They say that patience is a virtue and I would like to think that it's one I possess. I've literally watched years go by while I "wait" to get better. I schedule my entire life around when I can see the right doctor or get that one test that may have the answer. My patience is dwindling, that's obvious, but what choice do I have...except to wait?
This morning I waited (very patiently I must say since I had a level 4 (out of 5) migraine) on my primary care physician who I see about every 4-6 weeks. While he is a good doctor, he could use a refresher course in professionalism. A regular follow-up appointment can take 3 hours and that's only counting 30 minutes of doctor-patient time, at most! Today I was in the exam room by 8:02 for my 8:00 appointment which was the first appointment of the day. And then I waited. And waited. I finally heard the doctor ARRIVE at 8:25. Once he came in to the room, I had to wait a good ten minutes for him to review my file before any conversation took place. I understand that doctors are very busy and often get off-schedule and I actually appreciate a doctor that sticks around to answer all my questions. But what is the point of scheduling an 8 o'clock appointment if the actual start time is 8:30? Why should I be on time and organized if the doctor is not (and he never is!)? Why do I give him (and others) my time and money, only to wait for them to get around to treating me?
Being sick (or I guess "not well" in my case) is expensive to say the least. I'm blessed to have worked for a company that provides me with long term disability for as long as I need it and offers great medical coverage. However, keeping up with insurance--who owes who and how much--is a full time job. It seems logical that a procedure or appointment that is 100% "eligible" when asking ahead of time should be easily billed and payed in a timely manner afterward. What I have learned is that NOTHING is logical when it comes to insurance. I'm literally waiting on several thousand dollars of reimbursement. Just last week I got an explanation of benefits that was not paid because the doctor (a different one this time) did not put the patient ID number on any of the bills. So, while I wait for the bills to get corrected, resubmitted and paid, that part of my treatment is on hold. I'm worried that this break will not only delay my recovery but actually cause me to regress. All I can do is wait and see.
They say that patience is a virtue and I would like to think that it's one I possess. I've literally watched years go by while I "wait" to get better. I schedule my entire life around when I can see the right doctor or get that one test that may have the answer. My patience is dwindling, that's obvious, but what choice do I have...except to wait?
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