This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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Leukapheresis & More....

I almost can't believe it is already Friday night! Where did the week go? This week has been quite busy and both physically and emotionally draining. Yesterday was my Leukapheresis for research (collection of White Blood Cells) and today I started my Prednisone. As always the Prednisone makes my blood sugars go up and so we are being very cautious as to what I am eating and drinking. My blood sugar was 250 yesterday which is just too high but I think I figured out just why it went up. After the Hickman placement I had quite a bit of nausea and so I did what I used to do with my chemo....I had a couple of glasses of Ginger Ale. I didn't even think about the fact that it is full of sugar. I don't drink a lot of sugary soda (I do my best to go with Pepsi One, Diet Rite or Diet Shasta's because they are made with Splenda which I find to be the best option for me)....that is unless I have a really bad headache. So, when it came to the nausea I just didn't even give it a second thought. Lesson learned! My blood sugar this morning was good at 122! (137 when they checked labs this morning) :)

The Leukapheresis seemed to go well. I did have a little numbness which I didn't really think a lot about because well, I get numbness all the time with my MS. Turns out I have to be more aware of these things because there are other things associated with some of these tests/procedures that can cause symptoms. For example, the numbness could have been a sign of low calcium, which apparently can happen with the Apheresis. Also, the G-CSF can cause flares in MS and so I just need to be hyper aware and report anything that comes up. I think after 5 years of MS I have just learned to live with certain symptoms and they are "my normal" that many times I don't even pay attention any more.

Tonight I am doing really well though. I was EXHAUSTED this morning and kind of gave them all a bit of a scare. Of course that is not what I meant to do, but I mentioned that my MS was showing itself this morning because I was exhausted and the last thing they want to do is start the G-CSF when you are having a flare. I don't believe I am having a flare but I will let them be the judge of that. I took a 3 hour nap this afternoon and it did wonders for me. Also one of the best things I have to report is that for the first time in a while I did not wake up with a headache! I can't tell you how great that feels. :) I was stiff/sore this morning....kind of hard to get out of bed but I have a feeling until this Hickman heals some that will just be how it is. I have been sleeping lying on my back so that I don't do anything to mess with it and to ensure I don't roll over I've placed pillows on both sides of me. Whatever works to ensure the Hickman area heals properly.

Speaking of the Hickman....this thing is slick as a whistle! I thought that port was pretty cool (no more trying to find a vein that didn't have scare tissue and was each to access) but the Hickman is really slick. They don't have to poke me at all and it's easy access. One of the nurses suggested that I get baby socks to put around it so that it did not hurt my skin (I'm very sensitive) and that has helped a ton. It is a little cumbersome and I have to be really careful of it, but when it comes to the things the nurses/docs need it's quite nice to have. I think it will really make this process much easier (which is why they have you get them, I'm sure) LOL

Well, I'm off to bed. It is just past 10:00 and I have to be back at the SCCA for labs at 8am. Did I mention I'm not a morning person???? My G-CSF is scheduled to start at 8:30 so if I'm feeling up to it I will let you all know how it goes, otherwise I will update in a couple of days. Have a great weekend!


Linda - Nickers and Ink said...

Thanks for boldly sharing your story and your MS journey. May your words embolded many!

And may a cure be found!

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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