Today is day 2 of no tape..this go 'round. We had a great trip to Denver this past weekend, and saw many friends. The weather was perfect, with a chill in the air! I rested along the way. Yay Rach! My vision was double the entire trip, but at least I could speak and eat without much issue. Yay eating! Treatment on Monday and today was very helpful.
Tomorrow, Lee and I will meet with the MS Doctor, for the first time. He offices with our MG Doc. One big happy family! Turns out they have one other MS/MG patient. I can't tell how crazy these odds are. We should learn more about what type of MS this appears to be, what treatment options/drugs are available, and what next steps are recommended. My expectation is that we will have a informative first meeting, and then we'll have time to consider the options and follow up with MS Doc regarding our choice. Who knows what tomorrow holds...we'll see!
My brother-in-law (my bro) Chris, is taking part in the Augusta Ironman this Sunday! I'm so excited for this and honored that through this event, Chris has elected to raise money for the MDA's Myasthenia Gravis research efforts. Chris, I love ya man!
https://www.joinmda.org/MyEvent/MyHomepage/tabid/174640/Participant/cmaume/Default.aspx
I mentioned earlier in the month, that we helped out with the Austin MDA telethon! It was great and our video package was well received. If you're bored, check this link out too.
http://vimeo.com/14990282
Other than slightly slow speech, all is well today! I can see straight, eat without much issue, speak fairly well (co workers love this) and have my strength. Thank you God, today is a good day. Now, lets go eat
Wednesday, September 22, 2010
Friday, September 10, 2010
In this week's episode...
What day is this? Where am I? Seriously, it feels like the past 2 weeks have been some sort of bad episode of Dallas.
In our last episode, After fighting Myasthenia Gravis symptoms for a month, Rachel was finally experiencing relief and felt good. Early in the week of relief, her doctors broke the news, "Rachel also has MS". (insert bad organ music now) Rachel and Lee anticipated this news and felt emotionally prepared..but there was more! Late in the week of relief, they called her again (other Doctors, but still one of 'them'), "Rachel's blood is saturated with bacteria, report to the hospital STAT." After enjoying a restful Labor Day weekend in the comforts of the hospital, Rachel and Lee broke out (check out, same difference), but not before they dealt with..("dom, dom, dom, dommmmm")..the catheter. This is where we join the duo, this week.
Well, the current last page to this saga, is a new catheter. Turns out there was staph infection, but not the most horrible kind. (YAY!) I'm on antibiotics and cath #3 was removed before I left the hospital on Tuesday. If you glance back to January post, you'll note my 'Ode to a Permacath' which was written while preparing to remove #2, and install #3. I reposted this on Facebook, with a few minor tweaks reflecting the introduction of #4. I digress....
Today, the lovely and talented permacath #4 was installed by the fine Radiological team that I've come to know and trust over the past year and a half. Nice catching up with everyone over an IV of happy juice and blue sterile pads. All went well! Immediately after, we joined the equally talented pheresis team, for a plasma treatment. Symptoms are rearing their nasty head, since I'd only had 1 treatment this week.
Tonight and this weekend, I rest. My body is sore, my eyes are crossed and my speech is slow...but...all is well because there is (Gateway!) church, there is (Broncos!) football, and there is (cold!) beer. I AM BLESSED!
Tune in next week, for more exciting adventures :)
In our last episode, After fighting Myasthenia Gravis symptoms for a month, Rachel was finally experiencing relief and felt good. Early in the week of relief, her doctors broke the news, "Rachel also has MS". (insert bad organ music now) Rachel and Lee anticipated this news and felt emotionally prepared..but there was more! Late in the week of relief, they called her again (other Doctors, but still one of 'them'), "Rachel's blood is saturated with bacteria, report to the hospital STAT." After enjoying a restful Labor Day weekend in the comforts of the hospital, Rachel and Lee broke out (check out, same difference), but not before they dealt with..("dom, dom, dom, dommmmm")..the catheter. This is where we join the duo, this week.
Well, the current last page to this saga, is a new catheter. Turns out there was staph infection, but not the most horrible kind. (YAY!) I'm on antibiotics and cath #3 was removed before I left the hospital on Tuesday. If you glance back to January post, you'll note my 'Ode to a Permacath' which was written while preparing to remove #2, and install #3. I reposted this on Facebook, with a few minor tweaks reflecting the introduction of #4. I digress....
Today, the lovely and talented permacath #4 was installed by the fine Radiological team that I've come to know and trust over the past year and a half. Nice catching up with everyone over an IV of happy juice and blue sterile pads. All went well! Immediately after, we joined the equally talented pheresis team, for a plasma treatment. Symptoms are rearing their nasty head, since I'd only had 1 treatment this week.
Tonight and this weekend, I rest. My body is sore, my eyes are crossed and my speech is slow...but...all is well because there is (Gateway!) church, there is (Broncos!) football, and there is (cold!) beer. I AM BLESSED!
Tune in next week, for more exciting adventures :)
Monday, September 6, 2010
...and 1 more thing...
Happy Labor Day all! I hope you were able to rest from all regular labor today.
We've had an interesting weekend. As I mentioned to you in my last post, I'm feeling good! August was nasty, but September is starting off most fabulously! Fabulous, but interesting. This past Friday, I had my regular treatment. Went well, no issues. Made it back to work, then off to lunch. While at lunch, the call came in, "Rachel, you need to come back to the hospital and need to check in".
Now, if you've heard my stories, I often make Doctors, Nurses and Techs aware that if there is a small chance of anything happening, being odd, or going slightly wrong, it will happen with me. I will make sure they earn their tuition! Friday, they called me into the hospital because my blood was wildly infected with bacteria. In most cases, to test for bacteria, you need to draw blood for cultures and then see if anything grows. In my case, there was so many critters running around my blood, the tech could clearly see the bacteria under the microscope.
After checking at the hospital for my mani/pedi (If I keep saying it, maybe they'll make that happen), and finding my room, the Doctors begin streaming. Three came by to tell me I'm odd. Duh!!!! Most impressive was the Infectious Disease Doc who was very confused as to why I was feeling and looking so well. My point was that August was horrible, and this was my first week of single vision in some time. Why wouldn't I feel good? He explained how messed up my blood was and that I should be feeling like I did a year+ ago, when my blood became sepsis.
All that said, we're still in the hospital and have yet to know exactly what kind of koodies I have. It is staph, and is all over, we just dont know which kind specifically. Blah, blah, blah...boring.
We busted outta here today for a few hours, to help out with the Austin Muscular Dystrophy Association's Labor Day Telethon. So much fun, and yours truly was even on TV. Lee and I both were! After our time away (thank you Doctors), we've returned to the hospital and are now relaxing again. What a good day..and I'm still feeling good!
We've had an interesting weekend. As I mentioned to you in my last post, I'm feeling good! August was nasty, but September is starting off most fabulously! Fabulous, but interesting. This past Friday, I had my regular treatment. Went well, no issues. Made it back to work, then off to lunch. While at lunch, the call came in, "Rachel, you need to come back to the hospital and need to check in".
Now, if you've heard my stories, I often make Doctors, Nurses and Techs aware that if there is a small chance of anything happening, being odd, or going slightly wrong, it will happen with me. I will make sure they earn their tuition! Friday, they called me into the hospital because my blood was wildly infected with bacteria. In most cases, to test for bacteria, you need to draw blood for cultures and then see if anything grows. In my case, there was so many critters running around my blood, the tech could clearly see the bacteria under the microscope.
After checking at the hospital for my mani/pedi (If I keep saying it, maybe they'll make that happen), and finding my room, the Doctors begin streaming. Three came by to tell me I'm odd. Duh!!!! Most impressive was the Infectious Disease Doc who was very confused as to why I was feeling and looking so well. My point was that August was horrible, and this was my first week of single vision in some time. Why wouldn't I feel good? He explained how messed up my blood was and that I should be feeling like I did a year+ ago, when my blood became sepsis.
All that said, we're still in the hospital and have yet to know exactly what kind of koodies I have. It is staph, and is all over, we just dont know which kind specifically. Blah, blah, blah...boring.
We busted outta here today for a few hours, to help out with the Austin Muscular Dystrophy Association's Labor Day Telethon. So much fun, and yours truly was even on TV. Lee and I both were! After our time away (thank you Doctors), we've returned to the hospital and are now relaxing again. What a good day..and I'm still feeling good!
Wednesday, September 1, 2010
How 'bout them apples?
And so it is. Almost 2 months ago, I posted with the news that I may also have MS. Turns out, in fact I do. MRIs we did last week pretty much confirm things now.
How about that! Not only do I already have a crazy-odd kinda autoimmune disease, but then we're going to pair it up with another one! I did tell my Doc that I always wanted to be special, but that this was getting a bit out of hand. hahaha
First things first, Lee and I are aok. We've had time to prepare for the idea thankfully, and expected this news. Now its here. All is still early and we are researching our newest friend. So appropriate to have this start with the school year. It feels like we've studied and lived MG so much for the past year and a half, that we've graduated and have been assigned our next class. Geeezzzz....
More later...
How about that! Not only do I already have a crazy-odd kinda autoimmune disease, but then we're going to pair it up with another one! I did tell my Doc that I always wanted to be special, but that this was getting a bit out of hand. hahaha
First things first, Lee and I are aok. We've had time to prepare for the idea thankfully, and expected this news. Now its here. All is still early and we are researching our newest friend. So appropriate to have this start with the school year. It feels like we've studied and lived MG so much for the past year and a half, that we've graduated and have been assigned our next class. Geeezzzz....
More later...
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