Today I made pancakes. As in, that is all I did. The whole day. I had had a busy couple of days, made a quick trip up to Dallas and back, and there really wasn't anything that absolutely had to be done, and man, I was craving pancakes.
I woke up around 11, deliriously exhausted and wondering what on Earth I had been doing for the previous 10 hours while I thought I had been sleeping (running around holding a desk over my head?), forced my head off the pillow and needed.pumpkin.pancakes.
With recipe pulled up on my phone, I walked into the kitchen and just stood. This happens often, I miss home cooked meals and always have grand plans to cook them but the minute I am in the kitchen, my head starts to spin and I realize I have nowhere near enough energy to pull it off. I then slap peanut butter on a piece of bread and go lie down.
Not today, today was the day of pancakes and if it was the only thing I was going to do, it would be the making of these pancakes (from scratch, I might add). I did just that, making an enormous mess yet fully enjoying my finished product. I walked back to bed and collapsed, my day's work done. I fell back asleep and didn't wake up until after dark.
Some days will just be like this. And it sucks. I think about all of the things that can be accomplished in a day, getting hitched, having babies, working, traveling, all that I used to accomplish in a day - running 10 miles, working 12 hours, etc, and I feel guilty for my wasted day of rest. Many think that bed rest is a dream come true, 'oh the books I could read! the movies I could watch! the sleep I could get! Actually, it is miserable, lonely and depressing. After a day in bed, you feel ten times worse about yourself and your life than you ever should - but for that day, all that you needed to accomplish, you did. Where did we get this notion that if we didn't work ourselves to the bone we didn't earn the right to take a day off?
You just have to let these days happen, and move on - thinking about all the things you can do once you are well, realizing in order for that to happen the bed rest must come first.
Thursday, October 24, 2013
Thursday, September 26, 2013
Friday, September 20, 2013
number 81
i gathered the courage to go to the doctor again this week. I usually go through a period of time every six months where i just can't bring myself to do it - i just can't go on that hypochondriac trial every other week anymore, it's just too degrading. Yet, when a doctor is so successful it takes nine months to get an appt, you at least schedule one.
As the months went by, I would sometimes think about it but seeing as I have been on the list for an appt for a doctor in Utah since 2010, yes, three years ago - I didn't put much stock in it. The week before the appt I even considered canceling it, would it be too expensive, a waste of my time, but most of all, would I be able to handle yet another one tell me this was all in my head. Seeing as I had been feeing especially sick these last few months, I figured what did I have to lose.
I showed up with my trusty binder of medical records and sat in the office, a very nice office I might add. One after one I noticed autistic children coming and going and from behind the front desk and I could hear a strong texan man tell them he loved them. Odd, I thought - that is not something you hear a doctor say everyday. I soon saw the man with the voice, a jolly late fifties crew cut man in scrubs with Dr Stewart embroidered on the chest - yep, that's the guy who supposed to work miracles.
I was called back and hooked up to all of these machines that tested my inner ears when certain sounds were played. Very interesting, I thought - I guess they were measuring the amount they contract when sounds are played, a sign for nervous system function. Next was standing on platforms that measured my balance, with eyes closed, without eyes closed and finally again with a big piece of foam under me. Hmmm...was I at another quack's? I was showed into an exam room and this big burly man came right in. His first words were 'what are you doing in my office when you look so healthy?' I almost fled the scene right there. Then he got a big smile on his face and said, "I bet you've heard that before."
The next 90 minutes were kind of a blur. Yes, he spent an hour and half with me, right in my face, drawing diagrams, explaining this and that and I may not have understood exactly the chemistry of it all I understood one thing. He.got.it. He understood completely. He would ask me the most random questions about my health and he would nail it every time. Things that I had never thought were related to the fatigue he called out. And after we talked about how all of this started while I was a missionary in Africa, he then witnessed to me.
Yes, you read that right. In the south, to get 'a witness' from someone is basically to hear a testimony. And my, my he gave one. Probably not pc, probably could get him in trouble, but hey, it's his show. He started out as an ENT and after growing tired of performing sinus surgery after sinus surgery and not really seeing much difference in his patients' health, he moved on to neurosurgery. He was one of the top neurosurgeons in the country for many years and again, after 'cutting people up and shoving pills down their throat', he again grew weary of his chronically ill patients inability to improve. He said every night he would wake up about 3 am and go into his office to think, and it wasn't long before things just started coming to him and he started to take notes. He claims he was taught by the Lord. I can believe that.
Years later, he is one of the top autism specialists in the World and also treats a lot of MS, lupus, alzheimers and autoimmune patients. It's all inflammation of the nervous system, he claims, the brain is running on no fuel. He looked at all of my records and couldn't believe some of the things previous doctors had missed. Things that had shown up but docs had discredited with, 'that must be a fluke, don't worry about it,' or 'that's only marginally high'. He then said he would fix me within a year. This, I've heard several times and he could read my skepticism and added, 'you the be pessimist, I'll be the optimist.' He gave me a big hug and promised to call
What's next? 10 tubes of blood drawn on the way home. I like that he is so proactive with this, 'you've been sick long enough, lets fight this' and daily injections and a few other supplements, steroids, and vitamins. His theory: help the body get in a state to where it can heal itself. He said he will call me next week with the lab results, 'to tell me he was right about just how sick I am' and we'll go from there.
I am skeptical, but there is something telling me to be hopeful. In the last year or so I had pretty much resolved the fact that I would be sick the rest of my life, and I would still have a fulfilling life, and it would be okay. Now, do I have to though?
As the months went by, I would sometimes think about it but seeing as I have been on the list for an appt for a doctor in Utah since 2010, yes, three years ago - I didn't put much stock in it. The week before the appt I even considered canceling it, would it be too expensive, a waste of my time, but most of all, would I be able to handle yet another one tell me this was all in my head. Seeing as I had been feeing especially sick these last few months, I figured what did I have to lose.
I showed up with my trusty binder of medical records and sat in the office, a very nice office I might add. One after one I noticed autistic children coming and going and from behind the front desk and I could hear a strong texan man tell them he loved them. Odd, I thought - that is not something you hear a doctor say everyday. I soon saw the man with the voice, a jolly late fifties crew cut man in scrubs with Dr Stewart embroidered on the chest - yep, that's the guy who supposed to work miracles.
I was called back and hooked up to all of these machines that tested my inner ears when certain sounds were played. Very interesting, I thought - I guess they were measuring the amount they contract when sounds are played, a sign for nervous system function. Next was standing on platforms that measured my balance, with eyes closed, without eyes closed and finally again with a big piece of foam under me. Hmmm...was I at another quack's? I was showed into an exam room and this big burly man came right in. His first words were 'what are you doing in my office when you look so healthy?' I almost fled the scene right there. Then he got a big smile on his face and said, "I bet you've heard that before."
The next 90 minutes were kind of a blur. Yes, he spent an hour and half with me, right in my face, drawing diagrams, explaining this and that and I may not have understood exactly the chemistry of it all I understood one thing. He.got.it. He understood completely. He would ask me the most random questions about my health and he would nail it every time. Things that I had never thought were related to the fatigue he called out. And after we talked about how all of this started while I was a missionary in Africa, he then witnessed to me.
Yes, you read that right. In the south, to get 'a witness' from someone is basically to hear a testimony. And my, my he gave one. Probably not pc, probably could get him in trouble, but hey, it's his show. He started out as an ENT and after growing tired of performing sinus surgery after sinus surgery and not really seeing much difference in his patients' health, he moved on to neurosurgery. He was one of the top neurosurgeons in the country for many years and again, after 'cutting people up and shoving pills down their throat', he again grew weary of his chronically ill patients inability to improve. He said every night he would wake up about 3 am and go into his office to think, and it wasn't long before things just started coming to him and he started to take notes. He claims he was taught by the Lord. I can believe that.
Years later, he is one of the top autism specialists in the World and also treats a lot of MS, lupus, alzheimers and autoimmune patients. It's all inflammation of the nervous system, he claims, the brain is running on no fuel. He looked at all of my records and couldn't believe some of the things previous doctors had missed. Things that had shown up but docs had discredited with, 'that must be a fluke, don't worry about it,' or 'that's only marginally high'. He then said he would fix me within a year. This, I've heard several times and he could read my skepticism and added, 'you the be pessimist, I'll be the optimist.' He gave me a big hug and promised to call
What's next? 10 tubes of blood drawn on the way home. I like that he is so proactive with this, 'you've been sick long enough, lets fight this' and daily injections and a few other supplements, steroids, and vitamins. His theory: help the body get in a state to where it can heal itself. He said he will call me next week with the lab results, 'to tell me he was right about just how sick I am' and we'll go from there.
I am skeptical, but there is something telling me to be hopeful. In the last year or so I had pretty much resolved the fact that I would be sick the rest of my life, and I would still have a fulfilling life, and it would be okay. Now, do I have to though?
back home
I didn't say I would stop writing all together, I just needed to be relieved of the guilt of not writing every day. The words will come when they come, and when they do, I will write.
Tonight I am feeling such peace and contentment. I am back in my beloved Austin, after a summer of extreme stress, travel and work; I really should have never left this place. Everything was unsettling, unfamiliar, somehow just not right. I traveled to some beautiful places, and I worked really hard and really long hours, but it all felt off, completely wrong.
The whole working in a cubicle staring at numbers thing, another failed experiment. I got sicker by the hour and in turn, got lower and lower. It was another experiment, a failed one, in attempting to live life with this illness while carrying on a 9-5 job. doesn't work.
I drove into town last Saturday and immediately could breathe again. Everything just felt right. Sure, there are things about life I wish I could change, but where I am at when I am in my beloved new home, is pretty wonderful.
Tonight I am feeling such peace and contentment. I am back in my beloved Austin, after a summer of extreme stress, travel and work; I really should have never left this place. Everything was unsettling, unfamiliar, somehow just not right. I traveled to some beautiful places, and I worked really hard and really long hours, but it all felt off, completely wrong.
The whole working in a cubicle staring at numbers thing, another failed experiment. I got sicker by the hour and in turn, got lower and lower. It was another experiment, a failed one, in attempting to live life with this illness while carrying on a 9-5 job. doesn't work.
I drove into town last Saturday and immediately could breathe again. Everything just felt right. Sure, there are things about life I wish I could change, but where I am at when I am in my beloved new home, is pretty wonderful.
Wednesday, July 10, 2013
I've got nothing.
For the past few months I have been too busy, overexerting, overspending, over-committing (this is no surprise) but as things are coming to a close, and I am learning the same lesson yet again, I just have nothing to say. Severe writer's block. Oh how I wish for the inspiration that was coming so freely a year ago. And I am sure as not going to get on my soapbox when I am not following my own advice.
I'll be back - not sure when but I'll be back. Include your email address below and I'll let you know. Charles and I need to do some resting and maybe get the tank off of the empty line.
I'll be back - not sure when but I'll be back. Include your email address below and I'll let you know. Charles and I need to do some resting and maybe get the tank off of the empty line.
Wednesday, June 19, 2013
Sunday, June 9, 2013
Yearly Review
Cali was lovely, too much but lovely. Whenever one of these things I attempt doesn't go well I wonder what I will be able to do and what I can no longer do in this illness. Are the plans I have futile? Should I completely alter the life I hope to have in order to avoid this disappointing physical failure? In short, should I go back to bed?
I have been, and maybe always will be, stuck in this sticky part of a well mind (okay, okay...it's at least a whole lot better off than my body) and a body that just can't keep up with the ideas and plans I make for it. I push it and push it and fall short, every single time. Now, this truly is not the end of the World as what health I do have leaves me in a far better state than most, and for that I am truly grateful.
I just get so tired of always falling short to these extreme lengths I beg my body to go to. Perhaps I should plan a one mile jog instead of a marathon, so to speak.
One of the greatest ways I used to feel accomplishment was to push my body, time, schedule, mind far more than I thought I could handle yet walk away an exhausted yet achieved mess. I would end up far too busy with paying for what I'd done to ever enjoy my victory; I'm now learning a better quality of life yet smaller trophy may be the ultimate wisdom.
So this brings me back to the things I want out of my life, the big steps along the way, are they ridiculous pre-cure? Then again, how dare I let this illness take even more away from me. Wayne Gretzky said 'you miss 100% of the shots you never take.'
In my life I see enjoying my days, taking my trips and doing my exploring, can this still be done in between naps? I see kiddos, ones with only two legs instead of four, I truly believe I was put on this Earth for that reason; am I ridiculous for refusing
to let that go? I don't think I am, it will just have to be much different than I had thought.
The solution that rears its ugly head each time, that 'b' word that I might have to name a child after or something, I must learn balance. And a well planned, well balanced, eager to say no, wary to say yes scares the tar out of me. It's the gray, it's the nothing all that special and the extraordinarily ordinary that scares me out of bed everyday and pushes on to projects and places I have no business in. This balancing act will be a life lesson for me and although I have been getting better at saying no here and there lately, I must get to the point of planning to utter the word instead of tackling its counterpart's climb.
Here I go again. Wish me luck.
I have been, and maybe always will be, stuck in this sticky part of a well mind (okay, okay...it's at least a whole lot better off than my body) and a body that just can't keep up with the ideas and plans I make for it. I push it and push it and fall short, every single time. Now, this truly is not the end of the World as what health I do have leaves me in a far better state than most, and for that I am truly grateful.
I just get so tired of always falling short to these extreme lengths I beg my body to go to. Perhaps I should plan a one mile jog instead of a marathon, so to speak.
One of the greatest ways I used to feel accomplishment was to push my body, time, schedule, mind far more than I thought I could handle yet walk away an exhausted yet achieved mess. I would end up far too busy with paying for what I'd done to ever enjoy my victory; I'm now learning a better quality of life yet smaller trophy may be the ultimate wisdom.
So this brings me back to the things I want out of my life, the big steps along the way, are they ridiculous pre-cure? Then again, how dare I let this illness take even more away from me. Wayne Gretzky said 'you miss 100% of the shots you never take.'
In my life I see enjoying my days, taking my trips and doing my exploring, can this still be done in between naps? I see kiddos, ones with only two legs instead of four, I truly believe I was put on this Earth for that reason; am I ridiculous for refusing
to let that go? I don't think I am, it will just have to be much different than I had thought.
The solution that rears its ugly head each time, that 'b' word that I might have to name a child after or something, I must learn balance. And a well planned, well balanced, eager to say no, wary to say yes scares the tar out of me. It's the gray, it's the nothing all that special and the extraordinarily ordinary that scares me out of bed everyday and pushes on to projects and places I have no business in. This balancing act will be a life lesson for me and although I have been getting better at saying no here and there lately, I must get to the point of planning to utter the word instead of tackling its counterpart's climb.
Here I go again. Wish me luck.
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