Ok, I'm done rolling around in my 'woe me' cave...time to crawl out and soak up the sun again.
Monday was rough, and Tuesday much better. Today, I'm aiming for 90%! Pheresis time again, and this time, my pressure and heart rate are normal...well, normal for me. Vision is returning to normal, speech is close to where it should be, and swallowing isn't far behind. Geezz... I have to own this episode, because I didn't respect the disease.
Its so easy to get wrapped up in ourselves and forget that we don't control everything. Maybe I can control which breakfast taco I eat today, but I'm not controlling how that taco nourishes my body or the energy it gives me to deal with pheresis. I can't control MG, that's for certain. Respect the disease. Respect the lack of control, and respect the decisions you DO get to make. I should have rested, I should have taken a second treatment, I should have used the restroom before sitting down in this chair for an hour. :)
Four bottles of Albumin down, 1 to go. So, in this short time, I'll say today is a good day. I'm not laid up in a hospital bed, like those next to me. My vision is primarily single today. The breakfast taco didn't choke me and the orange juice taste good. Today is a good day.
Wednesday, February 17, 2010
Monday, February 15, 2010
Good and the Bad
I had hoped to start writing out here, to first, provide a single location to update my family and friends on my condition, rather than hound everyone via email so steadily. Secondly, my goal was to eventually provide others with MG, an additional point of reference in their discovery of the disease. Today, I'm working from home, after my treatment this morning. I got a little bit sick.
I was very excited to get to pheresis today, because I'd gone a week without one. I was trying to be a superhero and prove that I could. Mistake. The week prior, and since my last post I believe, we had a week long sales meeting that included many early mornings and late nights. That week, I also only took one treatment that week, and mainly because I was doing so well from treatment to treatment. Well, why do things the right way, when I can make them difficult? Rather than continue the 'good weeks' for a while, I decided timing was good to try for a 1-treatment week. Follow me?
The long story short, I should have rested and taken additional treatments. This last week has been tough, in that my speech was practically gone, my swallow was becoming labored, and to top it off, the double vision sat down to stay a while. Ug! So yes, I was excited for treatment today. I woke up this morning to find my heart racing, and my head a bit dizzy. I contributed this to the conclusion of another 1-week double vision cycle. I'm always a bit woozy on the last day, while things are bouncing between single and double vision. After they hooked me up to the machine today, which by the way was ready to go when I arrived at 8:30, my blood pressure started acting stupid! Technically, the pressure was fine, but my heart rate was insanely high. We checked it again, and it marked high again. I felt fine...and then I didn't.
WHAM! Like hot flash I suppose, because I considered stripping right there, my body ran hot, I broke into a sweat, my color went white(r), and the nurse and I pushed the chair into recline mode pronto. Faint and ready to run, I laid still with my sleeves pushed high, the sweat pearling on my lip, my knees held close to my chest, and then it passed. If that is anything like a menopausal hot flash...it ain't for me!
They pumped so many fluids to me, that I said I really needed to hit the restroom quickly. For fear of my falling down, the nurse walked with me down the hall. Good thing, because I'm sure I would have taken a digger or crawled into an open hospital room for a nap, had I been alone. After my water break, I returned to the chair, reconnected, watched the hear rate stabilize and then the BP started to sink a bit. Oh yay. When the BP drops, I know that anything I've eaten, will soon be exiting the wrong way quickly. Lee met me in the lab to help me down to the car, and took me back to his place to rest, while he works. Dang the BP drop...but thank God for Cola and saltine crackers. I'm sitting up and venting now.
The Good, I made it to treatment today, and will go again on Wednesday. Hopefully, my swallow and speech will return by then, and I can continue eating like I want to. The Bad, that MG is a crazy, stupid disease, and really ticks me off...and I know its ok to say that.
Time to nap again. ;)
I was very excited to get to pheresis today, because I'd gone a week without one. I was trying to be a superhero and prove that I could. Mistake. The week prior, and since my last post I believe, we had a week long sales meeting that included many early mornings and late nights. That week, I also only took one treatment that week, and mainly because I was doing so well from treatment to treatment. Well, why do things the right way, when I can make them difficult? Rather than continue the 'good weeks' for a while, I decided timing was good to try for a 1-treatment week. Follow me?
The long story short, I should have rested and taken additional treatments. This last week has been tough, in that my speech was practically gone, my swallow was becoming labored, and to top it off, the double vision sat down to stay a while. Ug! So yes, I was excited for treatment today. I woke up this morning to find my heart racing, and my head a bit dizzy. I contributed this to the conclusion of another 1-week double vision cycle. I'm always a bit woozy on the last day, while things are bouncing between single and double vision. After they hooked me up to the machine today, which by the way was ready to go when I arrived at 8:30, my blood pressure started acting stupid! Technically, the pressure was fine, but my heart rate was insanely high. We checked it again, and it marked high again. I felt fine...and then I didn't.
WHAM! Like hot flash I suppose, because I considered stripping right there, my body ran hot, I broke into a sweat, my color went white(r), and the nurse and I pushed the chair into recline mode pronto. Faint and ready to run, I laid still with my sleeves pushed high, the sweat pearling on my lip, my knees held close to my chest, and then it passed. If that is anything like a menopausal hot flash...it ain't for me!
They pumped so many fluids to me, that I said I really needed to hit the restroom quickly. For fear of my falling down, the nurse walked with me down the hall. Good thing, because I'm sure I would have taken a digger or crawled into an open hospital room for a nap, had I been alone. After my water break, I returned to the chair, reconnected, watched the hear rate stabilize and then the BP started to sink a bit. Oh yay. When the BP drops, I know that anything I've eaten, will soon be exiting the wrong way quickly. Lee met me in the lab to help me down to the car, and took me back to his place to rest, while he works. Dang the BP drop...but thank God for Cola and saltine crackers. I'm sitting up and venting now.
The Good, I made it to treatment today, and will go again on Wednesday. Hopefully, my swallow and speech will return by then, and I can continue eating like I want to. The Bad, that MG is a crazy, stupid disease, and really ticks me off...and I know its ok to say that.
Time to nap again. ;)
Thursday, February 4, 2010
We shall see!
Today is Thursday, and I'm tired. We have a large global event at work this week, and our department is responsible for hosting and all the details that come with this. My role is minor, but I'm still tired. Those in charge...they're sleep walking through the pain right now! (heart you!) Anywho...because of the crazy schedule this week, I opted to skip my pheresis treatment tomorrow. I've been having treatments twice a week now, since November. It has only been in the past few weeks that I've noticed my strength improving, between treatments. Yay!
As curious as this disease is, the variables that impact it's progressiveness, are equally as stunning. In the past few weeks, the only things to change for me have been the removal of a catheter and reinstall, tapering off of the Cellcept gradually, and completing the antibiotics. Maybe the infection was hampering my ability to maintain from week to week...who knows.
So, if all maintains as it has and I'm able to make it until Tuesday without issues, then I may be back to a weekly treatment schedule! Yeah baby!! ..its the little things that make me giddy, and encourage me to keep on shining! (my verse - John 11:4)
As curious as this disease is, the variables that impact it's progressiveness, are equally as stunning. In the past few weeks, the only things to change for me have been the removal of a catheter and reinstall, tapering off of the Cellcept gradually, and completing the antibiotics. Maybe the infection was hampering my ability to maintain from week to week...who knows.
So, if all maintains as it has and I'm able to make it until Tuesday without issues, then I may be back to a weekly treatment schedule! Yeah baby!! ..its the little things that make me giddy, and encourage me to keep on shining! (my verse - John 11:4)
Monday, February 1, 2010
Happy 1 week birthday
Happy 1-week birthday pemacath #3! You're doing a great job, and I hope you continue to hang in there. (haha, I crack me up) It seems like a much more distant event, but it has only been a bit more than a week since permacath #2 was removed, and #3 went in. The body soreness from this installation, has passed, and now we are in the 'get to know you phase.' I'm learning how far I can and can't roll over at night, or how to wear the seat belt now, as a passenger. Even more fun, how to position the catheter in my bra so that it isn't poking out, looking funny!
In the mean time, this is week 3 of the 'step down from Cellcept' effort. So far, so good! This will take 6 weeks, and after week 1, I thought I'd noticed increased symptoms. That indicated to me, that the Cellcept was working after all. We all felt is was NOT impacting me as hoped. As it turns out, now 2 weeks later, I've been feeling stronger than usual between treatments. Who knows what that's due to...maybe good rest. Or, it could be because permacath #2 is out, and the antibiotics are over. I've learned you just have to wait and see sometimes...its not mine to figure out...today. Tomorrow however, might just be the day!
Until that day, when we do figure this craziness out, I continue to lift my hands and say 'thank you' for blessing me with the ability to now praise YOU through new eyes...even though they are sometimes crossed...hehe
In the mean time, this is week 3 of the 'step down from Cellcept' effort. So far, so good! This will take 6 weeks, and after week 1, I thought I'd noticed increased symptoms. That indicated to me, that the Cellcept was working after all. We all felt is was NOT impacting me as hoped. As it turns out, now 2 weeks later, I've been feeling stronger than usual between treatments. Who knows what that's due to...maybe good rest. Or, it could be because permacath #2 is out, and the antibiotics are over. I've learned you just have to wait and see sometimes...its not mine to figure out...today. Tomorrow however, might just be the day!
Until that day, when we do figure this craziness out, I continue to lift my hands and say 'thank you' for blessing me with the ability to now praise YOU through new eyes...even though they are sometimes crossed...hehe
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