Day 1, stable vision. I think its important to count the good days too! Today is the first day in a long while, that I've felt more like myself. The right blood levels are climbing, so I have more energy; Eyes are calm and seeing clearly, so I feel less confused and more balanced; Mouth and speech are normal, so I'm more inclined to eat (and talk...I'll say it); the plasma pheresis treatments are going well, so I'm not getting physically sick after each one. Day 1! Its too easy to count the negatives, and I have been lately. I've been mad and very upset about where I am, and doing the 'why me' thing. That's ok, and I know that's ok and healthy to acknowledge those feelings, but its best not to dwell. So I wont...
Myasthenia gravis moves in waves, or patients experience flares. Sometimes medicines and treatments quiet these flares, other times they can't. For me, the symptoms range from double vision, weak speech and swallow, to weakened neck, shoulder & leg muscles. My treatment/medicine is truly the plasma pheresis.
In looking back over my attempt at blogging this past year, I reflect on my original goal. First, to help me avoid dwelling on my 'condition', I wanted communicate as much as I can about Myasthenia Gravis; to make the world aware this disease is around, to share the experience, the symptoms, the emotions, the frustrations and the successes that can come with MG. Second, to actually document my reality and make communication simpler to share with family and friends. Third, to clearly explain the divine source of my strength and energy, which is so necessary to get through all of this crap! :-D (Don't worry, He's heard me say much worse). Its been a long, trying year and we hear that after 2 years of MG, the symptoms tend to stabilize. We're still waiting... and while we wait, we appreciate. You should do the same.
Before your body slows you down, make a point to slow down this holiday season. Don't get lost in the speed of the commercial holiday season. Be present! Savor each moment you have with your family and friends. Look each person in the eye while you're speaking. Looks past their eyes and into their soul. When you exchange greetings with anyone, be sincere. If you can't be sincere, be quiet and smile. Most of all, let yourself feel the blessing of life. Regardless of what your faith is, what you believe in, or what you call it, feel the blessing of having life, of having loved ones around you, of having the amazing gifts that you do, and that you're here right now experiencing another day. We are so small and yet so wildly empowered. Don't miss that.
Day 1. Today was a good day.
Thank you all for your awesome love and support this year, sincerely!
You are a blessing to me!
Wednesday, December 22, 2010
Wednesday, December 15, 2010
Get your motor running
It has been a wild and crazy couple of weeks. After Thanksgiving, we took a short trip to GA for an early Christmas visit, and to celebrate Mom's birthday. Great time in chilly GA, seeing family and friends. We were also able to join Mom and Dad in their Sunday School class, while there. You walk into the room, and have the feeling come over you that God's business is being done. What a powerful group of prayer warriors! We had turkey and dressing for several days too...yumtastic. After shopping and resting and eating and resting, it was time to head back to TX. Double vision and all. Yeppers, that dang Myasthenia made the trip with us. Seems my body is not able to vacation away from the pheresis schedule.
Since mid-November, I've been dealing with a persistent pain in my back and ribs. It moves from front to back or side to side, but in large part it was all over. Originally, we thought this must be related to MS. Since this is a new disease for us to learn about, it only seems logical to blame it for any new symptoms. Wrong.
While shopping in GA, we ran into one of my dearest friends from home and she shared struggles her family was dealing with, regarding a different auto-immune disease. Some of their symptoms sounded like mine, and this prompted me to call our Pulmonologist in Austin and schedule an appointment upon our return. Good thing..after the Dr. visit on Thursday and a CT scan of my lungs/chest, and a different scan on Friday morning after pheresis, I was admitted to the hospital for blood clots in my lungs. Wha?!?! Really? Are you KIDDING me? I do my best to keep a smile on my face, but this time I was mad.
Evidently my lugs have had blood clots for a few months, causing the pains/breathing issues I've had since August. Some of that was MG I'm sure, but you don't know what you don't know, ya know? I didn't know the symptoms of Pulmonary Embolism.
So, as of late, we're treating the MG with pheresis and drugs, the MS with drugs, and now the PE with blood thinners..more drugs. Have I mentioned I dont care for drugs? This is frustrating!
Poor Lee, he's held me a couple of times this past week as I just cried out of being exhausted and mad. After I vent it out a little, I'm better. We just keep reminding each other that this is ours for a reason, although we may not understand it. If you've learned with us, a little bit about a disease called Myasthenia Gravis, then we've done good! If you've learned with us, that auto-immune diseases tend to show up in multiples, then we're doing really well! If you learned with us, that you can ride any of these waves if you let God power your boat, then you're helping make this journey worth the while. Make sure you're boat has a Hemi in it!
Since mid-November, I've been dealing with a persistent pain in my back and ribs. It moves from front to back or side to side, but in large part it was all over. Originally, we thought this must be related to MS. Since this is a new disease for us to learn about, it only seems logical to blame it for any new symptoms. Wrong.
While shopping in GA, we ran into one of my dearest friends from home and she shared struggles her family was dealing with, regarding a different auto-immune disease. Some of their symptoms sounded like mine, and this prompted me to call our Pulmonologist in Austin and schedule an appointment upon our return. Good thing..after the Dr. visit on Thursday and a CT scan of my lungs/chest, and a different scan on Friday morning after pheresis, I was admitted to the hospital for blood clots in my lungs. Wha?!?! Really? Are you KIDDING me? I do my best to keep a smile on my face, but this time I was mad.
Evidently my lugs have had blood clots for a few months, causing the pains/breathing issues I've had since August. Some of that was MG I'm sure, but you don't know what you don't know, ya know? I didn't know the symptoms of Pulmonary Embolism.
So, as of late, we're treating the MG with pheresis and drugs, the MS with drugs, and now the PE with blood thinners..more drugs. Have I mentioned I dont care for drugs? This is frustrating!
Poor Lee, he's held me a couple of times this past week as I just cried out of being exhausted and mad. After I vent it out a little, I'm better. We just keep reminding each other that this is ours for a reason, although we may not understand it. If you've learned with us, a little bit about a disease called Myasthenia Gravis, then we've done good! If you've learned with us, that auto-immune diseases tend to show up in multiples, then we're doing really well! If you learned with us, that you can ride any of these waves if you let God power your boat, then you're helping make this journey worth the while. Make sure you're boat has a Hemi in it!
Wednesday, November 24, 2010
Shining my light..because I can!
Two years ago, my first symptom appeared. Woke up, unable to spit toothpaste out. Later that day, I began to slur speech and have a nasty neck pain. Who knew that we would step into the world of Myastenia Gravis.
Today, I am thankful that we have 'this' neuromuscular, auto-immune disease, rather than some of the others which are so much more destructive. I am thankful that God has blessed me with the love and support of my fiance, family, and friends, without whom, I'm pretty sure my endurance would have crumbled a long time ago. I am thankful God has blessed me with a feisty spirit that doesn't want to give up or be sad for long. I am thankful that He is using me, to shine through. "This little light of mine, I'm gonna let it shine"
That concept really hit me this past Sunday morning, while enjoying the wind that was blowing. The leaves in the trees are colorful and crispy, so the wind created a sound I likened to applauding, and then decided the leaves were applauding the new day! How awesome. This gave me perspective on the wind too, in realizing how much it played a part in the experience. Without the wind, I wouldn't have taken notice of the leaves, which in turn made me appreciate the wind even more. So, the way I see it, God is always around us and sometimes it takes a crispy leaf like me with MG, to help people notice him in a new way.
So, with Thanksgiving here, I celebrate us! All that we've been through, yes - you're part of this too, and the amazing opportunity we all have to help shine a little light on Him.
God bless this food...let's eat.
Today, I am thankful that we have 'this' neuromuscular, auto-immune disease, rather than some of the others which are so much more destructive. I am thankful that God has blessed me with the love and support of my fiance, family, and friends, without whom, I'm pretty sure my endurance would have crumbled a long time ago. I am thankful God has blessed me with a feisty spirit that doesn't want to give up or be sad for long. I am thankful that He is using me, to shine through. "This little light of mine, I'm gonna let it shine"
That concept really hit me this past Sunday morning, while enjoying the wind that was blowing. The leaves in the trees are colorful and crispy, so the wind created a sound I likened to applauding, and then decided the leaves were applauding the new day! How awesome. This gave me perspective on the wind too, in realizing how much it played a part in the experience. Without the wind, I wouldn't have taken notice of the leaves, which in turn made me appreciate the wind even more. So, the way I see it, God is always around us and sometimes it takes a crispy leaf like me with MG, to help people notice him in a new way.
So, with Thanksgiving here, I celebrate us! All that we've been through, yes - you're part of this too, and the amazing opportunity we all have to help shine a little light on Him.
God bless this food...let's eat.
Thursday, November 11, 2010
Ug already.
Ok, UG! Guess what I'm wearing today? Tape. Yep...back to the tape. It's not horrible, but ug. I'm still chewing and speaking well enough, but its all slowing down. Now I'm just whining...my back hurts from neck to tail end. This could be MS related or just super intense cramping..which I don't typically experience. Who knows.... I'm just praying that God takes the stinking double vision away and that treatment tomorrow will do the trick. Otherwise, we'll go back to 3 next week. Did I mention Ug? UUUUGGGG! ...but it could be so much worse, and we've come so far...
Wednesday, November 10, 2010
Resting through it
Well, we've been roughly a month and a half without tape on the glasses. How awesome! ..and this is the second week, that we're trying only 2 pheresis treatments, rather than 3 a week. For the most part, I feel like we're getting by...but...
My back has been fighting me for the past few days, with tightness and spasms. This week is also the week that my body is under natural stress. (Was that dainty?) With all of this, I can feel my swallow becoming more difficult and my eyes want to fight too. Ug. This is what we've expected, and I consider this week my test. If we can survive the week without double vision, and can continue to rest the symptoms away, then we're really making progress!
We'll head back to Dallas for a follow up with the MuSK MG Dr. in a couple of weeks, and expect that we'll increase the dosage again, which i think will help more. My hope/goal...we make it to 1 treatment per week, by year's end.
Time to rest the eyeballs...
My back has been fighting me for the past few days, with tightness and spasms. This week is also the week that my body is under natural stress. (Was that dainty?) With all of this, I can feel my swallow becoming more difficult and my eyes want to fight too. Ug. This is what we've expected, and I consider this week my test. If we can survive the week without double vision, and can continue to rest the symptoms away, then we're really making progress!
We'll head back to Dallas for a follow up with the MuSK MG Dr. in a couple of weeks, and expect that we'll increase the dosage again, which i think will help more. My hope/goal...we make it to 1 treatment per week, by year's end.
Time to rest the eyeballs...
Tuesday, November 2, 2010
Keep on, keeping on!
Hey their neighbors! I feel ashamed that my blogginess has slowed, while things have been better. However knowing many of you, if not hearing from me means we're on a good path, then we're all ok with this.
Things are still going well, no complaints! My symptoms are very minimal compared to where we've been. Each night, my mouth slows down, and I'm starting to take this as a divine sign...to hush. :) My vision has been stable, my fatigue minimal, and most everything dissipates with sleep/rest. This is manageable!! I've begun to say it out loud, that the increase in dosage of Prograf, has really made a difference. We visit the Dallas Neuro in a few weeks, and our Austin Neuro indicates that another increase in dosage is expected. We'll see.
I am experimenting with pheresis treatments this month. Because I am strong, and because the stability has lasted more than a month, I'm ready to see what happens when we try 2 treatments this week. We'll do 3 next week, and 2 the week following. The only way to see if the medicine is really making a difference, is to start weening myself away from plasmapheresis. Wow, wouldn't THAT be a blessing??? In the mean time, we just keep on, keeping on!
The MS seems to be fine, although its still not super clear to me what I should be looking for. Aside from some funky vision stuff, which the Neuro says sound more like migraines than the initial MS symptom, all has been quiet. We maintain our daily injection routine. Ug. ..but it could be worse. It has been worse.
So many of you are dealing with great health hurdles this month, and I lift you up in prayer, as you have done for me. Without naming you all, know that you are my prayer list, which is taped to my laptop. Rather use tape for something good like that, than on my glasses. :)
Love you all
Rach
Things are still going well, no complaints! My symptoms are very minimal compared to where we've been. Each night, my mouth slows down, and I'm starting to take this as a divine sign...to hush. :) My vision has been stable, my fatigue minimal, and most everything dissipates with sleep/rest. This is manageable!! I've begun to say it out loud, that the increase in dosage of Prograf, has really made a difference. We visit the Dallas Neuro in a few weeks, and our Austin Neuro indicates that another increase in dosage is expected. We'll see.
I am experimenting with pheresis treatments this month. Because I am strong, and because the stability has lasted more than a month, I'm ready to see what happens when we try 2 treatments this week. We'll do 3 next week, and 2 the week following. The only way to see if the medicine is really making a difference, is to start weening myself away from plasmapheresis. Wow, wouldn't THAT be a blessing??? In the mean time, we just keep on, keeping on!
The MS seems to be fine, although its still not super clear to me what I should be looking for. Aside from some funky vision stuff, which the Neuro says sound more like migraines than the initial MS symptom, all has been quiet. We maintain our daily injection routine. Ug. ..but it could be worse. It has been worse.
So many of you are dealing with great health hurdles this month, and I lift you up in prayer, as you have done for me. Without naming you all, know that you are my prayer list, which is taped to my laptop. Rather use tape for something good like that, than on my glasses. :)
Love you all
Rach
Sunday, October 24, 2010
Spinning and Reflecting
Sitting in spin class, gearing up for this week. What a week it will be!
This weekend we were in the Houston area. Saturday we took part in the first annual Myasthenia Gravis conference in Houston, at the Methodist Hospital. This is the same hospital we visited early in the diagnosis process, when ruling out ALS. This is also where we came to know Dr. Appel, who is a fixture in the neurology world. The conference was great, and very well attended, so much so, there will be a second annual event, and a larger facility will be reserved next year! AWESOME!! The more we collect as a group of MGers and Caregivers, the louder our voice will be. Then, on Sunday, we celebrated Lee's Grandaddy. Tuesday is his 90th birthday! What an awesome milestone to be able to share in, and with all of the family, and Grandaddy looked great!
I'm feeling very well! I'm hopeful we are noticing the benefits of Prograf. It has been a month since I pulled the tape off my glasses, and aside from weak speech and swallow later in the day, you would hardly know anything was going on. One month without double vision...wow...and this has been a busy month! November will slow down and I think we'll tinker with the pheresis schedule then. Maybe...just maybe I can step down to 2x a week, rather than 3x....who knows, we'll see.
Daily injections continue, and we're in the swing of it all now. Will check in with MS nurse to confirm we're doing everything correctly, but it seems to be minimal work; just an aggravation.
Thank you God for bringing us to this point of rest, of less physical stress, and fewer surprises. May we find comfort in this time and be recharged and ready for anything that may come our way next. Many of you are dealing with your own health issues, and will be managing surgeries in November. You are in my prayers too!
Thank you friends and family for reading along in our journeys. If nothing else, I've learned thus far that we are meant to share our lives with others, and to learn from each other. You've taught me a great deal...and I thank you for this.
This weekend we were in the Houston area. Saturday we took part in the first annual Myasthenia Gravis conference in Houston, at the Methodist Hospital. This is the same hospital we visited early in the diagnosis process, when ruling out ALS. This is also where we came to know Dr. Appel, who is a fixture in the neurology world. The conference was great, and very well attended, so much so, there will be a second annual event, and a larger facility will be reserved next year! AWESOME!! The more we collect as a group of MGers and Caregivers, the louder our voice will be. Then, on Sunday, we celebrated Lee's Grandaddy. Tuesday is his 90th birthday! What an awesome milestone to be able to share in, and with all of the family, and Grandaddy looked great!
I'm feeling very well! I'm hopeful we are noticing the benefits of Prograf. It has been a month since I pulled the tape off my glasses, and aside from weak speech and swallow later in the day, you would hardly know anything was going on. One month without double vision...wow...and this has been a busy month! November will slow down and I think we'll tinker with the pheresis schedule then. Maybe...just maybe I can step down to 2x a week, rather than 3x....who knows, we'll see.
Daily injections continue, and we're in the swing of it all now. Will check in with MS nurse to confirm we're doing everything correctly, but it seems to be minimal work; just an aggravation.
Thank you God for bringing us to this point of rest, of less physical stress, and fewer surprises. May we find comfort in this time and be recharged and ready for anything that may come our way next. Many of you are dealing with your own health issues, and will be managing surgeries in November. You are in my prayers too!
Thank you friends and family for reading along in our journeys. If nothing else, I've learned thus far that we are meant to share our lives with others, and to learn from each other. You've taught me a great deal...and I thank you for this.
Monday, October 11, 2010
Dare I say it...
All is (still) well! I'm very tired this week, but that's fairly common.
For the guys, this may be too much info, so close your eyes.
For the gals, you'll appreciate this fact. Most women report exacerbated symptoms for this disease (and many others), during the week their cycle starts. Turns out mother nature really does stress the body out a bit, or the hormonal shift has an impact on our ability to tolerate. The guys who read along with us, are now smiling and nodding. Yes, I know you men have known this fact about females since the dawn of time...and we choose to believe we are only difficult...ahem...different minded, when it suits us. ;)
Men, you can uncover your eyes now. So, thank God, this week is another good week. Aside from greater fatigue and a weakened pallet at day's end, I feel good and remain steady on the MG med (Prograf), maintain the pheresis schedule (3x week), and look forward to our follow up visit with MG Dr at month's end. Sleep really does appear to help!
We're also on day 5 of the new MS medication (Copaxone). This *nifty* little medication is administered through a needle. Yeppers, daily injections. Its not bad...well not that bad. I think this is where I am now grateful for the many bee stings or ant bites I must have had as a kid. I know the sensation, and know it goes away.
This week's excitement is that my parents and Aunt Al come to visit this weekend, so we're looking forward to a laid back, restful visit. Especially after a visit to the Salt Lick BBQ...I see many naps on the horizon...
Even thought I can't see you there, thanks for reading along... xo
For the guys, this may be too much info, so close your eyes.
For the gals, you'll appreciate this fact. Most women report exacerbated symptoms for this disease (and many others), during the week their cycle starts. Turns out mother nature really does stress the body out a bit, or the hormonal shift has an impact on our ability to tolerate. The guys who read along with us, are now smiling and nodding. Yes, I know you men have known this fact about females since the dawn of time...and we choose to believe we are only difficult...ahem...different minded, when it suits us. ;)
Men, you can uncover your eyes now. So, thank God, this week is another good week. Aside from greater fatigue and a weakened pallet at day's end, I feel good and remain steady on the MG med (Prograf), maintain the pheresis schedule (3x week), and look forward to our follow up visit with MG Dr at month's end. Sleep really does appear to help!
We're also on day 5 of the new MS medication (Copaxone). This *nifty* little medication is administered through a needle. Yeppers, daily injections. Its not bad...well not that bad. I think this is where I am now grateful for the many bee stings or ant bites I must have had as a kid. I know the sensation, and know it goes away.
This week's excitement is that my parents and Aunt Al come to visit this weekend, so we're looking forward to a laid back, restful visit. Especially after a visit to the Salt Lick BBQ...I see many naps on the horizon...
Even thought I can't see you there, thanks for reading along... xo
Wednesday, October 6, 2010
My fear factor
I've been hiding. No excuses, except for fear. Why? Well, because things have been very good.
How crazy does this sound? I'm hiding out because I feel good and honestly, I'm afraid to talk about it or acknowledge that fact, because I expect it will end the streak. I'm not a superstitious person, but for some reason, I've become skiddish about this one. We'll see what happens.
Since my last note, 2 weeks ago, my vision cleared and I've had almost 2 really good weeks. Minimal symptoms, and eating lots. I'm excited to see the scale tipping in the other direction (weight on!). We met with the MS doctor and have direction on the medicine that is best for me (Copaxone). My case is mild, but we want to begin treatment in consideration of life 10...20 years down the road. Follow up scans will be done down the road, to watch the lesions. With the help of amazing friends, we moved me into Lee's condo last weekend, and the unpacking continues. I may have had slightly more 'stuff' than I thought I did.... :)
Lots of fun stuff going on this month! To keep up, I continue to rest up during the weeks, eat lots when I can, soaking up the cooler weather in Austin, TX, and enjoy every bit of my life. God has blessed me with so much, it would be a shame to stick my head in the sand and miss all that's going on.
How crazy does this sound? I'm hiding out because I feel good and honestly, I'm afraid to talk about it or acknowledge that fact, because I expect it will end the streak. I'm not a superstitious person, but for some reason, I've become skiddish about this one. We'll see what happens.
Since my last note, 2 weeks ago, my vision cleared and I've had almost 2 really good weeks. Minimal symptoms, and eating lots. I'm excited to see the scale tipping in the other direction (weight on!). We met with the MS doctor and have direction on the medicine that is best for me (Copaxone). My case is mild, but we want to begin treatment in consideration of life 10...20 years down the road. Follow up scans will be done down the road, to watch the lesions. With the help of amazing friends, we moved me into Lee's condo last weekend, and the unpacking continues. I may have had slightly more 'stuff' than I thought I did.... :)
Lots of fun stuff going on this month! To keep up, I continue to rest up during the weeks, eat lots when I can, soaking up the cooler weather in Austin, TX, and enjoy every bit of my life. God has blessed me with so much, it would be a shame to stick my head in the sand and miss all that's going on.
Wednesday, September 22, 2010
I'll enjoy this while it last!
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
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
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...
Sunday, August 29, 2010
Another Ode
My Ode to August 2010
Dear month of August, you were not my friend,
As you dealt me MG symptoms from start to end.
It isn't your fault, you must manage the heat,
but I tell ya what, you kept me off my feet.
Double vision started early, just after the 3rd.
Then slow speech and troubled swallow followed the herd.
This time around, you played your Ace card
And dished out body weakness; that symptom was hard.
Each symptom alone is very much a strain,
But dishing all at once? Come on, you're such a pain!
Today is the first day, in 3 weeks and a half
My glasses aren't taped (yet), and I really can laugh.
Granted this month has been really rather rough
But its times like this, when I remember that I'm tough!
Myasthenia Gravis and August, for you my calendar is now shut,
And as a sincere parting gift, you can both kiss my butt!
Dear month of August, you were not my friend,
As you dealt me MG symptoms from start to end.
It isn't your fault, you must manage the heat,
but I tell ya what, you kept me off my feet.
Double vision started early, just after the 3rd.
Then slow speech and troubled swallow followed the herd.
This time around, you played your Ace card
And dished out body weakness; that symptom was hard.
Each symptom alone is very much a strain,
But dishing all at once? Come on, you're such a pain!
Today is the first day, in 3 weeks and a half
My glasses aren't taped (yet), and I really can laugh.
Granted this month has been really rather rough
But its times like this, when I remember that I'm tough!
Myasthenia Gravis and August, for you my calendar is now shut,
And as a sincere parting gift, you can both kiss my butt!
Wednesday, August 25, 2010
clank-clank...clank-clank
While visiting MaMa's house (Dad's mom) as kids, we would hop up on the couch, looking back over the top, out the window and down the street to see the trains go by. I remember sleeping on that couch and hearing the train crossing the tracks early, early in the morning. Such a soothing sound..clank-clank....clank-clank...clank-clank. My sisters and I would watch the train go by and try to count the cars! It really did feel like the train went on forever, sometimes. We were watching something from a distance, and the cars looked much the same. We would count and count though, knowing there would be a red caboose at some point.
I drove along side an Amtrak train yesterday, while heading down the highway. No, I wasn't racing the train, but it did make me smile. Calming. This cycle of MG symptoms has been like watching the train at MaMa's. We know there is a red caboose on the way, and until it gets here, we just keep counting.
Last night, was the first night I slept through the night in roughly 3 weeks. My vision is trying to single up..the first time in almost 3 weeks. I'm eating as much as I can, and can almost speak without issue. The little red caboose is swinging around the corner and we're pulling this train uphill! Wahooooooo
I drove along side an Amtrak train yesterday, while heading down the highway. No, I wasn't racing the train, but it did make me smile. Calming. This cycle of MG symptoms has been like watching the train at MaMa's. We know there is a red caboose on the way, and until it gets here, we just keep counting.
Last night, was the first night I slept through the night in roughly 3 weeks. My vision is trying to single up..the first time in almost 3 weeks. I'm eating as much as I can, and can almost speak without issue. The little red caboose is swinging around the corner and we're pulling this train uphill! Wahooooooo
Friday, August 20, 2010
Walk it off
Remember the feeling you had in Gym class (P.E.), after you had to run a lap around the gym or track? Now, I mean the feeling you had before you became the super athlete you are now. Sheer fatigue all over your body, shortness of breath, body shakes and you just wanted to lie down? Then the coaches told you to raise your hands to your head and walk it off. Next thing you know all the kids are walking about, like rotating satellite dishes. Did that really help us, or just distract us long enough to let our bodies calm down? Who knows...
I bring this up because this is the feeling a myasthenic has, during muscle fatigue. Generally, this remains focused in the chest, shoulders and arms. When its time to shampoo the hair, I prop one elbow up on the wall to support the effort of washing shampoo in/out. Brushing my teeth, and I'm grateful for my electric toothbrush, but I still have to support that arm long enough for the brush to do its job. Arms are spaghetti, and often, I will use one to help the other with a task.
Then there are the neck muscles. I call it the wet towel experience. Go wet a heavy towl, and wrap it around your noggin as if you were drying your hair. That balancing act feels the same when your neck muscles are exhausted. Its hard to hold your head up. You prop your forehead on a cabinet while chopping something for dinner, you bend over the sink and hold your forehead when spitting toothpaste. If you look towards the floor, you sometimes have to push your forehead back up to look forward.
Don't forget the chest..where that whole breathing thing happens. Imagine a chest cold. Heavy sensation like a 15 pound cat were laying across you. The air isn't truly restricted, but its labored and short. If you could only lean forward, and move the pressure, you could get a deep breath and stretch the diaphragm. Ahhhh, what a feeling. That's what I'm doing right now. Seated, leaning forward and trying get that deep breath, and if i'm real lucky, the stretch. The momentum to really get a deep breath that leaves you feeling refreshed.
Just another day in the life of a Myasthenic, and don't get me wrong. Even though there are restrictions, everything still functions. For that, I am grateful!
Time to go walk around with my hands on my head...lets see if that helps...
I bring this up because this is the feeling a myasthenic has, during muscle fatigue. Generally, this remains focused in the chest, shoulders and arms. When its time to shampoo the hair, I prop one elbow up on the wall to support the effort of washing shampoo in/out. Brushing my teeth, and I'm grateful for my electric toothbrush, but I still have to support that arm long enough for the brush to do its job. Arms are spaghetti, and often, I will use one to help the other with a task.
Then there are the neck muscles. I call it the wet towel experience. Go wet a heavy towl, and wrap it around your noggin as if you were drying your hair. That balancing act feels the same when your neck muscles are exhausted. Its hard to hold your head up. You prop your forehead on a cabinet while chopping something for dinner, you bend over the sink and hold your forehead when spitting toothpaste. If you look towards the floor, you sometimes have to push your forehead back up to look forward.
Don't forget the chest..where that whole breathing thing happens. Imagine a chest cold. Heavy sensation like a 15 pound cat were laying across you. The air isn't truly restricted, but its labored and short. If you could only lean forward, and move the pressure, you could get a deep breath and stretch the diaphragm. Ahhhh, what a feeling. That's what I'm doing right now. Seated, leaning forward and trying get that deep breath, and if i'm real lucky, the stretch. The momentum to really get a deep breath that leaves you feeling refreshed.
Just another day in the life of a Myasthenic, and don't get me wrong. Even though there are restrictions, everything still functions. For that, I am grateful!
Time to go walk around with my hands on my head...lets see if that helps...
Wednesday, August 18, 2010
Can't keep my mouth shut!
I'm afraid to go to sleep. There, I said it.
Over the past few days, I've been able to eat, but my body fatigue has increased, and the 100 degree weather here, doesn't help. Now, at night while trying to sleep, my mouth will fall open. This is the MG at work..or not working as the case would be. Since the muscles are vacationing, my jaw will drop, then the mouth breathing begins, followed by dried mouth and throat and then shock and you're awake. I would venture to say this happens to everyone when you have a sinus infection or head cold, and you can't breath through your nose well. Same idea. Its midnight my time, and I need to sleep, but I dont want to be woken again, due to the startle.
Yes, I've tried taping my mouth shut. Its ok, I laughed too! I wear an eye mask at night for the same reasons, my eye lids dont close all the way (scared my sis with this once upon a time), so the mask helps keep the lids down and the light out. The combination of taped mouth and secure eyes, actually made me a bit claustrophobic ..so I can say I'll hold off on that trick for now.
Ug...I'm ready for symptoms to take a break...and I need to rest to help do this...so, I'll give 'er a go. Nap time.
Over the past few days, I've been able to eat, but my body fatigue has increased, and the 100 degree weather here, doesn't help. Now, at night while trying to sleep, my mouth will fall open. This is the MG at work..or not working as the case would be. Since the muscles are vacationing, my jaw will drop, then the mouth breathing begins, followed by dried mouth and throat and then shock and you're awake. I would venture to say this happens to everyone when you have a sinus infection or head cold, and you can't breath through your nose well. Same idea. Its midnight my time, and I need to sleep, but I dont want to be woken again, due to the startle.
Yes, I've tried taping my mouth shut. Its ok, I laughed too! I wear an eye mask at night for the same reasons, my eye lids dont close all the way (scared my sis with this once upon a time), so the mask helps keep the lids down and the light out. The combination of taped mouth and secure eyes, actually made me a bit claustrophobic ..so I can say I'll hold off on that trick for now.
Ug...I'm ready for symptoms to take a break...and I need to rest to help do this...so, I'll give 'er a go. Nap time.
Saturday, August 14, 2010
Gimme a big plate of YUM, with a side of everything!
How much fun it is to wake up hungry, and then *know* that you can go eat? Have you ever considered this? I'm not referring to the fact that we are blessed to have food in the pantry or in the 'fridge, I'm referring to the fact that your body will allow you to properly chew and swallow your food! Ooooh, the sun shines so much brighter on the days just following a series of MG symptoms. It has been a long week, as shared in the my last post. Not being able to really eat, was part of the week.
Many MGers, lose muscle control in their 'bulbar' region, head/neck/shoulders. This can result in many issues: difficulty breathing, raising your arms, holding your head up, speaking, chewing because your tongue has taken a vacation, swallowing because your throat muscles left with the tongue, facial expressions, double vision, or droopy eyelids. I'm sure I've missed a few. All that said to make the point that eating was difficult this week.
Last night, Lee greeted me with side dishes from Mann's BBQ in Austin. OH YUM!!!! First, I love Mann's BBQ because they cook wonderful home cooking..Georgia Style. Second, because they aren't afraid to fry a few things. :D I love fried okra, and Lee brought some home last night. Crispy food works well when your tongue doesn't; you dont have to move it much. Green beans and tater salad...I started eating, successfully, and may have eaten everything up. Maybe I shared..
This morning, I woke up and went straight for the kitchen, to make toast with Mom's Apple Butter. YUMMM again! Bread is a no-no for me when dealing with the vacationing tongue. You can chomp once, maybe twice, but then you have this saturated ball of dough loose in your chomper, sticking to your teeth or the top of your mouth. In lieu of your tongue doing its job, one of the trusty fingers has to step up to maneuver the mass to your back teeth for a proper swallow attempt. After that, you're hopeful a slip and slide party is going on back there, so the swallow attempt doesn't result in bread hanging out in your throat. You all know what that feels like. Ug!
Can you tell I'm rambling with glee? My facial area still feels like Joan Rivers' face looks, but I'm sipping milk without coughing, chewing bread without choking, and planning my menu for today...the Bulbar vacation is over!
Many MGers, lose muscle control in their 'bulbar' region, head/neck/shoulders. This can result in many issues: difficulty breathing, raising your arms, holding your head up, speaking, chewing because your tongue has taken a vacation, swallowing because your throat muscles left with the tongue, facial expressions, double vision, or droopy eyelids. I'm sure I've missed a few. All that said to make the point that eating was difficult this week.
Last night, Lee greeted me with side dishes from Mann's BBQ in Austin. OH YUM!!!! First, I love Mann's BBQ because they cook wonderful home cooking..Georgia Style. Second, because they aren't afraid to fry a few things. :D I love fried okra, and Lee brought some home last night. Crispy food works well when your tongue doesn't; you dont have to move it much. Green beans and tater salad...I started eating, successfully, and may have eaten everything up. Maybe I shared..
This morning, I woke up and went straight for the kitchen, to make toast with Mom's Apple Butter. YUMMM again! Bread is a no-no for me when dealing with the vacationing tongue. You can chomp once, maybe twice, but then you have this saturated ball of dough loose in your chomper, sticking to your teeth or the top of your mouth. In lieu of your tongue doing its job, one of the trusty fingers has to step up to maneuver the mass to your back teeth for a proper swallow attempt. After that, you're hopeful a slip and slide party is going on back there, so the swallow attempt doesn't result in bread hanging out in your throat. You all know what that feels like. Ug!
Can you tell I'm rambling with glee? My facial area still feels like Joan Rivers' face looks, but I'm sipping milk without coughing, chewing bread without choking, and planning my menu for today...the Bulbar vacation is over!
Wednesday, August 11, 2010
Signed - Hopeful & Exhausted
Coming to you 'live' from spin class..or the human oil change...or treatment.. One week since we last chatted, and guess what? Its been a week full of symptoms. Thats what I get for trying to alter my treatments from 3x a week, to 2x a week. Lesson learned. I'm exhausted from tinkering with the silly mess.
We are just past the 3 month mark with the new drug, so I'm still hopeful this one will work. Hopeful, but not holding my breath. Right now, the pheresis is the one thing that works, and even though it can't prevent the occasional flare of symptoms, it does lessen the magnitude. This past week, I've been dealing with double vision, slow swallow, weak speech and fatigue..nothing new, but its exhausting. I thank God that I am surrounded by folks who understand whats going on and have patience to listen to my horrid speech during weeks like this. The lack of pressure takes such a weight off my shoulders. Ya know? When you can just be yourself, and people get it.
The one thing we haven't really tried is steroids, and we've been avoiding this option. We've not heard much positive about the effects of steroids, aside from the relief they can provide. This sounds odd, doesn't it? From fellow MGers and some of the Drs, I've heard the use of 'roids can really weaken your bones and your internal system/plumbing. This week, I hit the point of wanting the steroids now, but Lee is always able to calm me down, he knows I dont really want to choose this..yet. I dont feel the costs out weight the benefit. I was tired from not being able to eat, drink well, speak much, choking, and being hungry. I get mad when I can't eat...or talk :)
Today is day 5 of what I expect to be a 7 day cycle. Even that isn't always true, but again, I choose to be hopeful.
We are just past the 3 month mark with the new drug, so I'm still hopeful this one will work. Hopeful, but not holding my breath. Right now, the pheresis is the one thing that works, and even though it can't prevent the occasional flare of symptoms, it does lessen the magnitude. This past week, I've been dealing with double vision, slow swallow, weak speech and fatigue..nothing new, but its exhausting. I thank God that I am surrounded by folks who understand whats going on and have patience to listen to my horrid speech during weeks like this. The lack of pressure takes such a weight off my shoulders. Ya know? When you can just be yourself, and people get it.
The one thing we haven't really tried is steroids, and we've been avoiding this option. We've not heard much positive about the effects of steroids, aside from the relief they can provide. This sounds odd, doesn't it? From fellow MGers and some of the Drs, I've heard the use of 'roids can really weaken your bones and your internal system/plumbing. This week, I hit the point of wanting the steroids now, but Lee is always able to calm me down, he knows I dont really want to choose this..yet. I dont feel the costs out weight the benefit. I was tired from not being able to eat, drink well, speak much, choking, and being hungry. I get mad when I can't eat...or talk :)
Today is day 5 of what I expect to be a 7 day cycle. Even that isn't always true, but again, I choose to be hopeful.
Tuesday, August 3, 2010
Hi, Hey, Wassup, Greetings!
Its been a little while since I posted, and mainly because I feel really good!! It scares me to type that out loud. As I've commented before, getting cozy with comfort makes me nervous, but I am grateful none the less.
Nothing really new on the health front. We did have a follow up visit with the Dr in Dallas who specializes in MG-MuSK patients. This visit, we were welcomed with handshakes and a smile. I almost fell over! Maybe on the last visit, we were there before the coffee kicked in. Doesn't really matter, he's super smart and that's why we want to be there. We'll just smile at him regardless... ;)
Again, I seem to be a classic case (his words) and my symptoms are consistent with MuSK MGers (his words again). Its SO nice to be normal sometimes, despite my haminess. Is that a word? It is now. Dallas Dr didn't care much about the developing MS stuff, since this is not his area. He has known MGers who have had MS and treated accordingly. Still, we're focused on the MG for now.
This past week, many people have commented on my speech being 'more like Rachel' and my eyes being bright again. My chew and swallow are strong, which really means I'm talking a lot. I love it! ...that my symptoms are waning, not that I talk a lot. I'll be excited to see how long this spell will last. Maybe the meds are starting to work? Maybe the 2 weeks of 3 treatments made the difference? Maybe the awesomeness is taking over? Frank, thanks for agreeing with me!
Thanks for your fabulous emails/text/calls/etc. Each one is welcomes and appreciated! While we wait to meet again with Dr. Horvit in Austin, we move slow, take social media breaks (sorry Mom), plan a wedding, eat lots and sleep more.
I think we should all take a nap now.
Nothing really new on the health front. We did have a follow up visit with the Dr in Dallas who specializes in MG-MuSK patients. This visit, we were welcomed with handshakes and a smile. I almost fell over! Maybe on the last visit, we were there before the coffee kicked in. Doesn't really matter, he's super smart and that's why we want to be there. We'll just smile at him regardless... ;)
Again, I seem to be a classic case (his words) and my symptoms are consistent with MuSK MGers (his words again). Its SO nice to be normal sometimes, despite my haminess. Is that a word? It is now. Dallas Dr didn't care much about the developing MS stuff, since this is not his area. He has known MGers who have had MS and treated accordingly. Still, we're focused on the MG for now.
This past week, many people have commented on my speech being 'more like Rachel' and my eyes being bright again. My chew and swallow are strong, which really means I'm talking a lot. I love it! ...that my symptoms are waning, not that I talk a lot. I'll be excited to see how long this spell will last. Maybe the meds are starting to work? Maybe the 2 weeks of 3 treatments made the difference? Maybe the awesomeness is taking over? Frank, thanks for agreeing with me!
Thanks for your fabulous emails/text/calls/etc. Each one is welcomes and appreciated! While we wait to meet again with Dr. Horvit in Austin, we move slow, take social media breaks (sorry Mom), plan a wedding, eat lots and sleep more.
I think we should all take a nap now.
Friday, July 23, 2010
I'd like to buy a vowel please
The anticipated lab results from the spinal tap, came back this week. Seems that my test are much the same as they were in late 2008. The spinal fluids still indicate elevated marks on the MS panel and on one other test. All of this remains a foreign language to me.
The element that has truly changed is the new spot on my brain. This was not present in my last MRI (late 2008). Couple this with the odd visual disturbance experienced in mid-June, and it sounds like the makings of MS. Evidently, there is not an easy yes/no test available to determine if you do/don't have this condition. So we wait.
What?! Wait, why wait, why not medicate now to prevent/slow development of more spots? Our plan is to do another MRI in 6 months to see if any additional spots show up. In speaking with others impacted by this disease (and more clearly diagnosed), it seems that someone may have a flare/episode once, and never experience that again. Others have more consistent symptoms. Rather than adding another medication to the routine, we'll relax and wait to see if something more happens. It could be that I'll have one spot only and nothing more occur, other than MG symptoms. Who knows...
It is common for those with autoimmune conditions, to develop other autoimmune conditions as well. The combination of MG & MS is rare, but it does happen. The two conditions are very similar. MG and MS have very similar symptoms and sometimes have the same treatment plans. Maybe I've had both for a while, since the labs are consistent. Maybe I really have one and not the other, but my positive MG test and brain spots make that unlikely. Maybe I have a new form of *awesomeness* called MMGS, that only the most super cool people on the planet can have! ...yeah, I like that version best. Lets go with it
Time for the weekend, enjoy all!
The element that has truly changed is the new spot on my brain. This was not present in my last MRI (late 2008). Couple this with the odd visual disturbance experienced in mid-June, and it sounds like the makings of MS. Evidently, there is not an easy yes/no test available to determine if you do/don't have this condition. So we wait.
What?! Wait, why wait, why not medicate now to prevent/slow development of more spots? Our plan is to do another MRI in 6 months to see if any additional spots show up. In speaking with others impacted by this disease (and more clearly diagnosed), it seems that someone may have a flare/episode once, and never experience that again. Others have more consistent symptoms. Rather than adding another medication to the routine, we'll relax and wait to see if something more happens. It could be that I'll have one spot only and nothing more occur, other than MG symptoms. Who knows...
It is common for those with autoimmune conditions, to develop other autoimmune conditions as well. The combination of MG & MS is rare, but it does happen. The two conditions are very similar. MG and MS have very similar symptoms and sometimes have the same treatment plans. Maybe I've had both for a while, since the labs are consistent. Maybe I really have one and not the other, but my positive MG test and brain spots make that unlikely. Maybe I have a new form of *awesomeness* called MMGS, that only the most super cool people on the planet can have! ...yeah, I like that version best. Lets go with it
Time for the weekend, enjoy all!
Wednesday, July 14, 2010
Also Known As
Well helloooo there! Its been a while, and thanks for reading. Its so much fun to learn who's popping in to keep up with us. I can't thank you enough for reading along, and for your prayers.
Tomorrow, I go in for another spinal tap...I mean 'lumbar puncture'. I'm not sure that one or the other sounds better, and sometimes its just called LP. Yeah, this is that nasty procedure where they poke ya in the spine and let you drip a little bit of spinal fluid into a vile. We've gone through this twice before, last year, when trying to diagnose the MG. The LPs were intended to rule out MS, and we had. Now, we're hoping to rule it out again.
Through a series of events, I had a MRI 2 weeks ago, and it turns out there is a spot or 'activity' (no jokes) on my brain scan that wasn't present a year and a half ago. SO...we need to test the good ole spinal fluid again, to see whats going on..or not going on I suppose. Thank goodness we know what to expect with the procedure, and no matter what comes back from the test, we're ready.
As it is, people with auto-immune disorders are very likely to develop additional conditions. Go figure! I suppose with your body compromised, anything is possible.
We ask for your prayers, and again thank you for each one. If there is *anything* we can pray for in your world, please let me know! Most have my email, but if you do not, post a note and we'll connect. All we can do is 'pray it forward' right?
Tomorrow, I go in for another spinal tap...I mean 'lumbar puncture'. I'm not sure that one or the other sounds better, and sometimes its just called LP. Yeah, this is that nasty procedure where they poke ya in the spine and let you drip a little bit of spinal fluid into a vile. We've gone through this twice before, last year, when trying to diagnose the MG. The LPs were intended to rule out MS, and we had. Now, we're hoping to rule it out again.
Through a series of events, I had a MRI 2 weeks ago, and it turns out there is a spot or 'activity' (no jokes) on my brain scan that wasn't present a year and a half ago. SO...we need to test the good ole spinal fluid again, to see whats going on..or not going on I suppose. Thank goodness we know what to expect with the procedure, and no matter what comes back from the test, we're ready.
As it is, people with auto-immune disorders are very likely to develop additional conditions. Go figure! I suppose with your body compromised, anything is possible.
We ask for your prayers, and again thank you for each one. If there is *anything* we can pray for in your world, please let me know! Most have my email, but if you do not, post a note and we'll connect. All we can do is 'pray it forward' right?
Wednesday, July 7, 2010
Rest, Reset, Rest some more
..and we're back. Back in Austin, and back to work. Yesterday we were up early to the airport, arrived safely, picked up cars, dropped off bags, picked up lunch on our way to work, and I even had a treatment! Whewww... What a fun trip Lee and I had back home. We spent lots of time with family, ate, played outside, slept, travled into N. GA, went to church with Ma & Pa, played with sparklers, ate, and ate some more.
Travel is rough with MG, regardless of how much you sit still and do nothing during that travel. Once in Texas again, my speech was slipping quickly and my eyes crossed. SO glad we had a pheresis treatment scheduled. It helped my mouth loosen some, and my eyes are much better today. Now, I still sound funny, my eyes are weak and by the end of the day I will see double..and that's ok, because I expect it, and can rest tonight.
In speaking with a coworker just now, who has dietary/medical craziness in her life, we share much of the same struggles. We each go through so much trial and error simply trying to understand more about what we have and how best to manage our lives. The small things, like testing how long you can go with out treatment or how you might react to a different variable (food/medicine/treatment), helps understand more and that helps remove worry. We can't control any of this (most important realization), but we can do our best to manage it (second most important realization). Anything after that is gravy! ...beef gravy even, because that's my favorite. Who invented that white sausage gravy anyways...its just not right ;)
Think I'll look for country fried steak and gravy for lunch now...yum...
Travel is rough with MG, regardless of how much you sit still and do nothing during that travel. Once in Texas again, my speech was slipping quickly and my eyes crossed. SO glad we had a pheresis treatment scheduled. It helped my mouth loosen some, and my eyes are much better today. Now, I still sound funny, my eyes are weak and by the end of the day I will see double..and that's ok, because I expect it, and can rest tonight.
In speaking with a coworker just now, who has dietary/medical craziness in her life, we share much of the same struggles. We each go through so much trial and error simply trying to understand more about what we have and how best to manage our lives. The small things, like testing how long you can go with out treatment or how you might react to a different variable (food/medicine/treatment), helps understand more and that helps remove worry. We can't control any of this (most important realization), but we can do our best to manage it (second most important realization). Anything after that is gravy! ...beef gravy even, because that's my favorite. Who invented that white sausage gravy anyways...its just not right ;)
Think I'll look for country fried steak and gravy for lunch now...yum...
Saturday, July 3, 2010
Ahhhhh GA!
One week later, and I'm in such a better space. The symptoms have pretty much passed, so it feels like we are back on a 1 week 'bad week' cycle. Like I've said before, every time I feel like the life cycle of this stupid disease is making sense (to me), the rug pull out from under me...so I'll just sit still and not worry with trying to control it. My eyes are still crossing at the end of the day, but with rest, that's tolerable.
Today is Saturday, and we're in Georgia. My home! We arrived late Thursday, and will leave early Tuesday. Travel is always tough with MG, but thanks to a very protective family, I get to relax and be worried over. Yesterday we learned my Aunt Dot passed away, and I am so grateful we can be here with my Dad at this time. What a blessing that she is no longer in pain, and that her family was with her.
Tonight, dinner with my sisters and their men, Tomorrow church with the parents, and Monday my sisters and mom and I are going to try on wedding dresses!! Wahoooo...I prayed last week that my symptoms would pass, so that I could really enjoy this trip and all that would be taking place. So YAY for lack of symptoms right now, for fresh vegetables out of the garden, and for naps. Speaking of...its time to rest.
Happy 4th of July weekend all!
Today is Saturday, and we're in Georgia. My home! We arrived late Thursday, and will leave early Tuesday. Travel is always tough with MG, but thanks to a very protective family, I get to relax and be worried over. Yesterday we learned my Aunt Dot passed away, and I am so grateful we can be here with my Dad at this time. What a blessing that she is no longer in pain, and that her family was with her.
Tonight, dinner with my sisters and their men, Tomorrow church with the parents, and Monday my sisters and mom and I are going to try on wedding dresses!! Wahoooo...I prayed last week that my symptoms would pass, so that I could really enjoy this trip and all that would be taking place. So YAY for lack of symptoms right now, for fresh vegetables out of the garden, and for naps. Speaking of...its time to rest.
Happy 4th of July weekend all!
Friday, June 25, 2010
Uuuug!!
Ok, today I'm crabby..yeppers...crabby. The double vision started again last night, my speech is slowed as is my swallow. Had an 'oil change' this morning, so maybe that with some sleep tonight will help, but really??!? I'm over the MG stuff!!!
That felt good...yes, I have these feelings often, but dont really share the darker side, and yet its important to share all aspects of this disease. Heck, this is the same with any condition in life. If its health / relationship / work / kids ..whatever..there are great days and not-so-great days. Despite how much we try to put the positive foot forward and shine the smile, sometimes this is more exhausting that sharing the real stuff. Today, you're getting my real stuff.
I've used a few choice words this morning between God and I, as I was driving with tape on my glasses over my right eye, as I'm choking on water because I'm drinking it too fast or the air in my mouth wasn't balanced, as I'm craving a big pizza but can only manage soup. Ahhhhhhhhhhhhhhh!!!! This #$% bites. I'm tired of it, I'm ready for the meds to work, I'm ready to get this dang catheter outta my chest, I'm ready to sleep on my belly, to float down the river, to swim in a pool, to sleep with my eyes closed. Over it!!
With all that venting, and you're only hearing a small bit of it, I still have that quiet voice in my heart reminding me that God is in all of this. He's with me with I have to drive, as I'm praying the cars away, he's with me when I start to choke and helps me calm my breathing so I can thinking and act as needed, he's with my silly catheter and guiding my hands as we keep the life line clean and infection free. He's with me through all of it, and He's ok that I cuss at him here and there too. He loves it when I get honest with him!
He got an ear full of honest today ;), and thanks for letting me share with you.
That felt good...yes, I have these feelings often, but dont really share the darker side, and yet its important to share all aspects of this disease. Heck, this is the same with any condition in life. If its health / relationship / work / kids ..whatever..there are great days and not-so-great days. Despite how much we try to put the positive foot forward and shine the smile, sometimes this is more exhausting that sharing the real stuff. Today, you're getting my real stuff.
I've used a few choice words this morning between God and I, as I was driving with tape on my glasses over my right eye, as I'm choking on water because I'm drinking it too fast or the air in my mouth wasn't balanced, as I'm craving a big pizza but can only manage soup. Ahhhhhhhhhhhhhhh!!!! This #$% bites. I'm tired of it, I'm ready for the meds to work, I'm ready to get this dang catheter outta my chest, I'm ready to sleep on my belly, to float down the river, to swim in a pool, to sleep with my eyes closed. Over it!!
With all that venting, and you're only hearing a small bit of it, I still have that quiet voice in my heart reminding me that God is in all of this. He's with me with I have to drive, as I'm praying the cars away, he's with me when I start to choke and helps me calm my breathing so I can thinking and act as needed, he's with my silly catheter and guiding my hands as we keep the life line clean and infection free. He's with me through all of it, and He's ok that I cuss at him here and there too. He loves it when I get honest with him!
He got an ear full of honest today ;), and thanks for letting me share with you.
Wednesday, June 23, 2010
Ug...trying to get into it, I really am
Ok, I'm having a day. All seats are taken at my pity party for one, no more room in here. No, no, I'm not having a pity party nor is this a cry for help. Just venting and whining, and trying to celebrate too.
We've had quite the month with the art show, MG awareness month, travel, weddings, etc. Lots of good stuff happening. Last week, was a very good week. My body felt strong, and in the 'cycle' that I feel I've identified, it was expected to be a good week. So, we tried doing only 2 treatments. In my highly trained scientific mind, I wanted to see how my body behaved 1.5 months in on the new meds, on 2 treatments, on a 'good week'. Not bad! This week, is expected to begin the rough weeks, and as of yesterday, the symptoms are starting to creep in. My voice has become weak, the swallow is slowing, my eyes feel stretched. However..its not as bad as I have seen it (no pun intended), at this same time, in months past. Hummm....maybe the meds are starting to help?
My head hurts due to the molds right now, so I'm not thinking very clearly, and sipping on soup frustrates me. So I'm wound up as it were, but I'm grasping at the good. I feel good! My body is strong, folks are telling me I have color in my cheeks again, I requested iron after treatment yesterday and this should help my energy, I'm still eating and dont see double.
In light of last week's post, I can't get around or away from this STUPID disease, so lets get into it, right? We've been distributing 'Awareness wristbands' all month, and I LOVE, LOVE, LOVE the response to them. We will see the Neuro tomorrow and report the good, the bad, and all of Momma's research...I mean, our research :). Since I'm working on my iron counts, we might be able to increase the Prograf dosage. Who knows...this is a walking science experiment..grab some popcorn and enjoy the show. All I know is that I really, really want to sit and pout right now because of the frustration, but things could be SO much worse.
Ok, thanks for the pep talk...I needed that. I'm going to finish my soup now and get back to work now.
We've had quite the month with the art show, MG awareness month, travel, weddings, etc. Lots of good stuff happening. Last week, was a very good week. My body felt strong, and in the 'cycle' that I feel I've identified, it was expected to be a good week. So, we tried doing only 2 treatments. In my highly trained scientific mind, I wanted to see how my body behaved 1.5 months in on the new meds, on 2 treatments, on a 'good week'. Not bad! This week, is expected to begin the rough weeks, and as of yesterday, the symptoms are starting to creep in. My voice has become weak, the swallow is slowing, my eyes feel stretched. However..its not as bad as I have seen it (no pun intended), at this same time, in months past. Hummm....maybe the meds are starting to help?
My head hurts due to the molds right now, so I'm not thinking very clearly, and sipping on soup frustrates me. So I'm wound up as it were, but I'm grasping at the good. I feel good! My body is strong, folks are telling me I have color in my cheeks again, I requested iron after treatment yesterday and this should help my energy, I'm still eating and dont see double.
In light of last week's post, I can't get around or away from this STUPID disease, so lets get into it, right? We've been distributing 'Awareness wristbands' all month, and I LOVE, LOVE, LOVE the response to them. We will see the Neuro tomorrow and report the good, the bad, and all of Momma's research...I mean, our research :). Since I'm working on my iron counts, we might be able to increase the Prograf dosage. Who knows...this is a walking science experiment..grab some popcorn and enjoy the show. All I know is that I really, really want to sit and pout right now because of the frustration, but things could be SO much worse.
Ok, thanks for the pep talk...I needed that. I'm going to finish my soup now and get back to work now.
Tuesday, June 15, 2010
Are you getting into it?
I really enjoyed church this past Sunday. We'd missed the prior week due to our trip to Denver..which was beautiful! A dear friend of mine was married, and the simple love was awesome. Sunday's message was about making the most of life's ordeals. A quote the preacher incorporated was borrowed from Outward Bound (excellent program), "If you can't get around it, get into it." This really rang true for me!
Honestly, I've wanted to get around MG since it met me. I felt my life was on the right track, and that my next chapter of fun was just beginning, with the move to Austin just over 2 years ago. ..then wham!..Rachel, meet MG. Hearing the story shared this Sunday, and the quote above, made me smile big. I feel like we've done just this. Can't get around MG at all, can't even dosey doe past it...so we've just gotten into it. What does that mean in your world?
I'm mine..we've become actively involved with our MG support group, helping raise awareness and networking. (For those wearing our awareness bracelets, THANK YOU!!) The local MDA chapter now has a real face for MG, and we're part of their team too. People around us now know more about this disease than they ever wanted to know (because I wont shut up), and this knowledge applies to other autoimmune diseases. This crazy disease has changed my life's pace, taught me a LOT about insurance and hospitals and doctors and blood levels and drug interactions and ...blah, blah, blah....it goes on and on.
You have the same things in your world, right? It might be a speeding ticket, or a child's report card with slipping grades, or an illness, or whatever...We all have life events that we can grow from. This doesn't mean we forget what may have happened, but it does mean we learn from the situation, we can grow, we can share our experience with others and support them through similar events...we can do so much.
Our emotions are real, and shouldn't be denied or ignored. I'm really not a big fan of MG...I would say I resent having it. I really dislike what it has forced me to do! I really don't like the catheter in my chest or the stupid machine that my life is centered around these days. These emotions are real and I own them. I also respect the fact that I am here. Right here. This is mine...and that's ok. I cant run from it, can't hide, can't make it go away, and cant ignore it.
I can't get around it...so I have to get into it!
Honestly, I've wanted to get around MG since it met me. I felt my life was on the right track, and that my next chapter of fun was just beginning, with the move to Austin just over 2 years ago. ..then wham!..Rachel, meet MG. Hearing the story shared this Sunday, and the quote above, made me smile big. I feel like we've done just this. Can't get around MG at all, can't even dosey doe past it...so we've just gotten into it. What does that mean in your world?
I'm mine..we've become actively involved with our MG support group, helping raise awareness and networking. (For those wearing our awareness bracelets, THANK YOU!!) The local MDA chapter now has a real face for MG, and we're part of their team too. People around us now know more about this disease than they ever wanted to know (because I wont shut up), and this knowledge applies to other autoimmune diseases. This crazy disease has changed my life's pace, taught me a LOT about insurance and hospitals and doctors and blood levels and drug interactions and ...blah, blah, blah....it goes on and on.
You have the same things in your world, right? It might be a speeding ticket, or a child's report card with slipping grades, or an illness, or whatever...We all have life events that we can grow from. This doesn't mean we forget what may have happened, but it does mean we learn from the situation, we can grow, we can share our experience with others and support them through similar events...we can do so much.
Our emotions are real, and shouldn't be denied or ignored. I'm really not a big fan of MG...I would say I resent having it. I really dislike what it has forced me to do! I really don't like the catheter in my chest or the stupid machine that my life is centered around these days. These emotions are real and I own them. I also respect the fact that I am here. Right here. This is mine...and that's ok. I cant run from it, can't hide, can't make it go away, and cant ignore it.
I can't get around it...so I have to get into it!
Friday, June 11, 2010
Time to Chew!
Indeed, its time to chew! Yesterday was the first day in 2 weeks, that I could see straight again..yeah baby! With that, the chew swallow is better too. Actually, my chew/swallow started to correct last Thursday, and the vision corrected this Thursday...well, yesterday..and then a week prior...make sense? Makes me dizzy...literally and figuratively. (My coffee is working now).
Everything is cyclical, or so it seems. It's an easy rationalization anyway. I must say, whenever I get comfy with the idea that I've figured something out (this pattern, or that trigger), then things tend to be shaken up. Its almost like the Big Guy is saying ..."Um..its not yours to figure out, but thanks for playing Rachel."
So, I do get nervous to think anything is stable, but I do enjoy the calms. In those times, I realize how much is going on around me, that has nothing to do with me. ;) Its awesome to take a deep breath and see how much good is going on in the world, despite the horrible things we can focus on. Lee had a pretty awesome story make it to press today, and it was a lot of hard work on his part to make it happen. I'm glad my eyes are clear and my voice is strong, so that I can cheer him on, and celebrate this day! Aunt Dot is not feeling well, and needs prayer warriors lifting her up. I'm glad my mind is alert so that I can listen and pray. A dear friend is having test to confirm an autoimmune disease is fighting her. I'm grateful my experience with this, can help me to comfort her.
I'm not sure how to wrap this entry up...I'll just leave you to chew on this... ;)
Everything is cyclical, or so it seems. It's an easy rationalization anyway. I must say, whenever I get comfy with the idea that I've figured something out (this pattern, or that trigger), then things tend to be shaken up. Its almost like the Big Guy is saying ..."Um..its not yours to figure out, but thanks for playing Rachel."
So, I do get nervous to think anything is stable, but I do enjoy the calms. In those times, I realize how much is going on around me, that has nothing to do with me. ;) Its awesome to take a deep breath and see how much good is going on in the world, despite the horrible things we can focus on. Lee had a pretty awesome story make it to press today, and it was a lot of hard work on his part to make it happen. I'm glad my eyes are clear and my voice is strong, so that I can cheer him on, and celebrate this day! Aunt Dot is not feeling well, and needs prayer warriors lifting her up. I'm glad my mind is alert so that I can listen and pray. A dear friend is having test to confirm an autoimmune disease is fighting her. I'm grateful my experience with this, can help me to comfort her.
I'm not sure how to wrap this entry up...I'll just leave you to chew on this... ;)
Friday, June 4, 2010
OH!! One more thing...
..and June is Myasthenia Gravis awareness month!! I encourage you to tell 1 person about this nutty disease..share the knowledge!
Easy come, easy go
Well, dang it all!!! I've been so frustrated this past week, because the symptoms caught up to me again. No, I did nothing crazy and didn't over extend myself (Mom :D). I'm pretty sure than when the Prograf catches up, this shouldn't happen, but it appears the symptom flare ups are related somehow to my menstrual cycle. I can't believe I just typed that word out loud..but we're all adults, right? I've chatted with several women around the globe via message boards, and it turns out their MG symptoms also flare around their cycle too! Wow, didn't think about it before, but suppose it makes sense. Symptoms flare with stress to the body...I'm not saying this 'causes' MG or the symptoms, I'm suggesting that symptoms are magnified during this natural wonder.
Blah, blah, blah...anyway... This past week, my speech has been poor, my body weak, my eyes crossed and my swallow very slow. Today is day 1 of feeling better! Yeppers, I was excited to wake up and swallow water with out issue! Then take pills without problem, and the next thing on my radar was a McGridddle from McD's. I couldnt' help myself...its time to eat!!!
Over the past week, the small amount of weight I'd been so excited to put on, fell off...."so long, farewell...la de dah de dah." We'll see how much I can put on in 2 weeks and then see if symptoms take over again, for 2 weeks after that. UG.... One month in to the Prograf..we definitely have a good baseline to start from...bring it on!!
Happy Birthday to Aunt Al today!! Truly and angel on this earth, Aunt Al carries so much, for so many, and so many of us have no idea. I'm proud to know you and call ya my Aunt Al!
Ok, I'm working on the second half of this McGriddle...more later....
Blah, blah, blah...anyway... This past week, my speech has been poor, my body weak, my eyes crossed and my swallow very slow. Today is day 1 of feeling better! Yeppers, I was excited to wake up and swallow water with out issue! Then take pills without problem, and the next thing on my radar was a McGridddle from McD's. I couldnt' help myself...its time to eat!!!
Over the past week, the small amount of weight I'd been so excited to put on, fell off...."so long, farewell...la de dah de dah." We'll see how much I can put on in 2 weeks and then see if symptoms take over again, for 2 weeks after that. UG.... One month in to the Prograf..we definitely have a good baseline to start from...bring it on!!
Happy Birthday to Aunt Al today!! Truly and angel on this earth, Aunt Al carries so much, for so many, and so many of us have no idea. I'm proud to know you and call ya my Aunt Al!
Ok, I'm working on the second half of this McGriddle...more later....
Monday, May 24, 2010
Weight for it, weight for it....
I've had that title in my head for a week! I have no idea what I'm writing about, but because I've finally begun to add weight back on, the line keeps repeating in my noggin'..."weight for it, weight for it."
I hopped on the scale last week just to confirm I was still *not* putting weight back on. Now, for those who don't know me personally, this last sentence was full of sarcasm, and I really have been trying to add weight, and eating anything I can. When the time comes, and my swallow isn't working great, the weight will start to fall off again. SO I am excited to see that my body is finally catching back up. Little bit, by little bit...and I'll take it, a pound at a time.
Since posting on the 13th, we've traveled to Denver for a dear friends pre-wedding festivities, we are working with other MGers to be ready for a month long art show in Austin focused on symptoms of MG, and I'm in transitioning job roles within my company. All great stuff, and consuming. Thanks to plenty of rest, and simple routines, my symptoms have remained minimal. I don't want to credit the meds...yet. Body weakness still greets me each day, but will power over comes. My speech will weaken when I speak for long periods of time, so I've actually been working on *not* talking as much. Who knew this was even possible?? ;) ...I'm learning patience...yep...weight for it..weight for it....
I hopped on the scale last week just to confirm I was still *not* putting weight back on. Now, for those who don't know me personally, this last sentence was full of sarcasm, and I really have been trying to add weight, and eating anything I can. When the time comes, and my swallow isn't working great, the weight will start to fall off again. SO I am excited to see that my body is finally catching back up. Little bit, by little bit...and I'll take it, a pound at a time.
Since posting on the 13th, we've traveled to Denver for a dear friends pre-wedding festivities, we are working with other MGers to be ready for a month long art show in Austin focused on symptoms of MG, and I'm in transitioning job roles within my company. All great stuff, and consuming. Thanks to plenty of rest, and simple routines, my symptoms have remained minimal. I don't want to credit the meds...yet. Body weakness still greets me each day, but will power over comes. My speech will weaken when I speak for long periods of time, so I've actually been working on *not* talking as much. Who knew this was even possible?? ;) ...I'm learning patience...yep...weight for it..weight for it....
Thursday, May 13, 2010
Cloudy day? No!
Sunny Day, Sweepin' the clooooouds away. On my way to where the air is sweet...
Remember that song? I had it stuck in my head yesterday, and find that I'm still humming it today. Day 7 of feeling good! Better anyway... I believe one of two things are taking place - 1) I'm in a 3-4 week cycle of 1 week good, 2 weeks iffy, and 1 week bad, or 2) I'm finally on the mend and catching back up, post Paris trip. Who knows..the adventure does not end!
Lots of inquiries about the medicine, and if we're noticing any benefits yet. I will say 'no' not yet, but again, we do not expect anything, for 3-4 months. I do notice upset belly more regularly though :) ...I know its in my system...
I'm feeling good, have a huge appetite, and my eyes are calming down! Its awesome to be able to breathe with ease again, and to sleep through the night after a good month or two of getting up 2-3 times a night. My body continues to fight a little bit, but its tolerable.
So today is a sunny day, and the clouds are definitely being swept away. We'll savor every moment and take it for what it is; the "right here, right now". Savor yours too!
Remember that song? I had it stuck in my head yesterday, and find that I'm still humming it today. Day 7 of feeling good! Better anyway... I believe one of two things are taking place - 1) I'm in a 3-4 week cycle of 1 week good, 2 weeks iffy, and 1 week bad, or 2) I'm finally on the mend and catching back up, post Paris trip. Who knows..the adventure does not end!
Lots of inquiries about the medicine, and if we're noticing any benefits yet. I will say 'no' not yet, but again, we do not expect anything, for 3-4 months. I do notice upset belly more regularly though :) ...I know its in my system...
I'm feeling good, have a huge appetite, and my eyes are calming down! Its awesome to be able to breathe with ease again, and to sleep through the night after a good month or two of getting up 2-3 times a night. My body continues to fight a little bit, but its tolerable.
So today is a sunny day, and the clouds are definitely being swept away. We'll savor every moment and take it for what it is; the "right here, right now". Savor yours too!
Monday, May 10, 2010
Day 3, post Oysters
Friday night we enjoyed a few oysters on the half shell (i looooove them) and prepared to begin the immune suppressant dance again. Saturday morning, the regiment began. Yes, the new drug is underway, and I take a tiny little capsule 3x per day, spaced out to roughly 7-8 hrs in between. This is to help prevent overwhelming the kidneys. Don't want to do that!
The boring part now, is waiting the 3-4 months that we expect are needed, before the drug ramps up in my body. When speaking to Mom on Mother's day, she asked me how I was feeling on the drugs, and my response was that after 3 pills, I've only lost my left ear, the right is still hanging on. JUST joking Mom, and thanks for laughing with us. All is fine, my body realizes there is new medication and is adjusting as expected. Now, we avoid those who are sick and germy, raw fish, grapefruit, etc. ..and we wait...
In the mean time, pheresis continues at 3x week. Symptoms are SO much better today than they were last week. Its awesome! They are not clearing entirely, but I can eat, and honestly that's all I care about. Vision remains double in my right eye, but its trying to straighten out...trying really hard.
That's all for now, just wanted to pop in and report on the new medication. ..and now we wait..
The boring part now, is waiting the 3-4 months that we expect are needed, before the drug ramps up in my body. When speaking to Mom on Mother's day, she asked me how I was feeling on the drugs, and my response was that after 3 pills, I've only lost my left ear, the right is still hanging on. JUST joking Mom, and thanks for laughing with us. All is fine, my body realizes there is new medication and is adjusting as expected. Now, we avoid those who are sick and germy, raw fish, grapefruit, etc. ..and we wait...
In the mean time, pheresis continues at 3x week. Symptoms are SO much better today than they were last week. Its awesome! They are not clearing entirely, but I can eat, and honestly that's all I care about. Vision remains double in my right eye, but its trying to straighten out...trying really hard.
That's all for now, just wanted to pop in and report on the new medication. ..and now we wait..
Thursday, May 6, 2010
Ready-Set-Go!
The past week has been a doosie! On Thursday of last week, after visiting Dr. Wolfe in Dallas, the double vision was starting. The difficulty chewing/swallowing/speaking caught up quickly. Today, the 1-week cycle is wrapping up. My vision is trying to be single, the swall/chew/speak is almost clear, and breathing is close to clear. I say 1-week cycle, but who knows why the symptoms have been so strong lately. Could it be that we came off cellcept, and maybe it was making a difference? Could it be that I keep pushing the limits too far, when times are good? Could it be related to hormones? Who knows..but what better time to start a new drug and really measure results, right?! :)
Today we had a follow up visit with Dr. Horvit here in Austin. We reviewed the Dallas visit and next steps. He's in agreement with everything and we'll get started on the new med (Prograf) tomorrow. This is another immune suppressant, so I'll have to avoid grapefruits, raw fish, sick people, etc. In celebration of this, we're going to have oysters tomorrow night...just before the start.
It may take 3-4 months, but here's hoping and praying that by the end of the summer, we'll start to see a decrease in the need for pheresis treatments. Keep checking in...we'll keep ya posted!
xo
Rach
Today we had a follow up visit with Dr. Horvit here in Austin. We reviewed the Dallas visit and next steps. He's in agreement with everything and we'll get started on the new med (Prograf) tomorrow. This is another immune suppressant, so I'll have to avoid grapefruits, raw fish, sick people, etc. In celebration of this, we're going to have oysters tomorrow night...just before the start.
It may take 3-4 months, but here's hoping and praying that by the end of the summer, we'll start to see a decrease in the need for pheresis treatments. Keep checking in...we'll keep ya posted!
xo
Rach
Thursday, April 29, 2010
Suppress me? ...yeah sure, let's try again!
Today went very well, and thank you for all of your prayers!
Dr. Wolfe turns out to be a very sharp man, and focuses on MuSK MG! I've never been more excited to have someone tell me I'm a 'classic case.' Sounds fairly average in my book! Turns out, I'm one of 17 or so MuSK MG cases Dr. Wolfe has seen in TX. All are women, with onset in their early decades (20s/30s). Pretty cool, eh?
For those new to this craziness, Myastenia Gravis (MG) is a rather rare autoimmune disease, in which signals from nerves are interrupted, before reaching their intended muscles. These muscles are mainly located in the upper body, neck and head/face. MG affects 2-7 out of every 10,000 people in Western countries. It occurs about 1.5 times more often in women than in men. Of those effected, 15% have a variation of the disease related to an antibody that fights the muscle-specific kinase (MuSK) protein. How 'bout them apples?
We talked about my MG history, and what treatment options are actually available to me. We discussed steroids, an immunosuppressant (Prograf), Rituximab and pheresis. As much as Lee and I were excited to hear more about Rituximab, it turns out I'm really not in a good place to try this. It has a 2-3 month ramp up period, and you can't/shouldn't have pheresis while taking it. At present, there is no way I would last 2 weeks without pheresis, let alone 2 months. So, of the remaining options, we will be moving forward with the immunosuppressant and continued pheresis with hope this drug works on me. Dr. Wolfe shared they've used this with a few other MuSK(ies - my word :) ), and had success. The ramp up period ranges from 2-4 months. We'll see!!
What a blessing to meet one of the men behind so many MuSK MG studies today, and to have him understand exactly what's going on. Unsolicited, he commented pheresis treatment 3x week is no way to live. AAAAAAMEN!!
We'll be working with our neuro in Austin, Dr. Horvit, on next steps and getting started with this newer drug. We'll return to Dallas for a visit with Dr. Wolfe in 3 months. In the mean time, pheresis must continue. As of writing this, my speech/swallow is labored due to all the chatting I've done today (me, chatty?), and my eyes are crossing. This just makes the next week that much more exciting, right?
Lee has been a rockstar and my angel! I love him dearly and am so blessed to have him by my side! Did we mention we're getting married? Date TBD, but most likely early 2011.
Time to rest these crisscrossed eyes... G'night All..and may God richly bless you and protect you. May you let His love fill you up!
Rach
Dr. Wolfe turns out to be a very sharp man, and focuses on MuSK MG! I've never been more excited to have someone tell me I'm a 'classic case.' Sounds fairly average in my book! Turns out, I'm one of 17 or so MuSK MG cases Dr. Wolfe has seen in TX. All are women, with onset in their early decades (20s/30s). Pretty cool, eh?
For those new to this craziness, Myastenia Gravis (MG) is a rather rare autoimmune disease, in which signals from nerves are interrupted, before reaching their intended muscles. These muscles are mainly located in the upper body, neck and head/face. MG affects 2-7 out of every 10,000 people in Western countries. It occurs about 1.5 times more often in women than in men. Of those effected, 15% have a variation of the disease related to an antibody that fights the muscle-specific kinase (MuSK) protein. How 'bout them apples?
We talked about my MG history, and what treatment options are actually available to me. We discussed steroids, an immunosuppressant (Prograf), Rituximab and pheresis. As much as Lee and I were excited to hear more about Rituximab, it turns out I'm really not in a good place to try this. It has a 2-3 month ramp up period, and you can't/shouldn't have pheresis while taking it. At present, there is no way I would last 2 weeks without pheresis, let alone 2 months. So, of the remaining options, we will be moving forward with the immunosuppressant and continued pheresis with hope this drug works on me. Dr. Wolfe shared they've used this with a few other MuSK(ies - my word :) ), and had success. The ramp up period ranges from 2-4 months. We'll see!!
What a blessing to meet one of the men behind so many MuSK MG studies today, and to have him understand exactly what's going on. Unsolicited, he commented pheresis treatment 3x week is no way to live. AAAAAAMEN!!
We'll be working with our neuro in Austin, Dr. Horvit, on next steps and getting started with this newer drug. We'll return to Dallas for a visit with Dr. Wolfe in 3 months. In the mean time, pheresis must continue. As of writing this, my speech/swallow is labored due to all the chatting I've done today (me, chatty?), and my eyes are crossing. This just makes the next week that much more exciting, right?
Lee has been a rockstar and my angel! I love him dearly and am so blessed to have him by my side! Did we mention we're getting married? Date TBD, but most likely early 2011.
Time to rest these crisscrossed eyes... G'night All..and may God richly bless you and protect you. May you let His love fill you up!
Rach
Monday, April 26, 2010
return of the oooozzzzeeee
I woke up this morning, ready to take on the day (thanks Dr. Laura)! First things first, the shower to wake up. Today is a 'dressing change' day for me. I wash the catheter site and change the dressing, every other day. This morning, I removed the gauze to see green ooze. Dang the ooze!
Just like a science experiment, I carried my 'findings' into treatment this morning, and showed off the ooze. We dripped some antibiotic right after treatment, and then will start on pills too. This is the first siting of ooze, and I'm not scared of it...but I know to report it now, and not try and 'mentally fight it'.
Thursday is the day we meet with Dr. Wolfe in Dallas. He is another neurologist, but studies and test quite a bit, with Myasthenia Gravis. From what I'm told, I expect we will be in a one-on-one meeting with him, rather than sitting in a room full of residents like a show and tell exercise (let's leave that for the ooze). We meet with him at 8am, and do more electromagasomethingoranother that afternoon, as a 'standard' part of the visit. This is where they insert a short needle (sewing needle size) into various areas of my head and body, to measure signals from my nerves and muscles. Atleast it's not a spinal tap or feeding tube...this is tolerable.
So, prayers up! Praying hard over this catheter, that we do not become infected. Prayer super duper hard for Dr. Wolfe and trusting that the 'right' thing will come from this visit. I know what I want to come from it, but know better than to try and force that into reality.
We'll report in!
*muuuuuuuah*
Rach
Just like a science experiment, I carried my 'findings' into treatment this morning, and showed off the ooze. We dripped some antibiotic right after treatment, and then will start on pills too. This is the first siting of ooze, and I'm not scared of it...but I know to report it now, and not try and 'mentally fight it'.
Thursday is the day we meet with Dr. Wolfe in Dallas. He is another neurologist, but studies and test quite a bit, with Myasthenia Gravis. From what I'm told, I expect we will be in a one-on-one meeting with him, rather than sitting in a room full of residents like a show and tell exercise (let's leave that for the ooze). We meet with him at 8am, and do more electromagasomethingoranother that afternoon, as a 'standard' part of the visit. This is where they insert a short needle (sewing needle size) into various areas of my head and body, to measure signals from my nerves and muscles. Atleast it's not a spinal tap or feeding tube...this is tolerable.
So, prayers up! Praying hard over this catheter, that we do not become infected. Prayer super duper hard for Dr. Wolfe and trusting that the 'right' thing will come from this visit. I know what I want to come from it, but know better than to try and force that into reality.
We'll report in!
*muuuuuuuah*
Rach
Thursday, April 22, 2010
Happy Thursday
I don't have much to say today (shocked?), but I clicked on the blog b/c I'm trying to write when things are GOOD too!
Today is GOOD! I'm feeling close to normal, and eating like a horse..well, a horse that likes meat, and cheese, and sweets. I'm not a huge sweets fan, but this morning, I was craving a McDonalds Bacon, Egg, Cheese biscuit. Their biscuits are just too big though..too much bread. Crawling out of my tunnel vision at the order board, I tried the McGriddle, which surprised me! I honestly thought I was ordering the BEC on an English Muffin..nope, it turned out to be a small pancake, with syrup cooked in somewhere. I don't want to know how it was made, how horrible it is, or where it came from 30 mins before I ordered...All I know is that it hit the spot, and was good!
We (Lee and I) are working on picking a date and location for wedding madness. That's fun! Soon we'll get to do the more fun stuff...like sample food...;)
I suppose today I'd like to share how grateful I am for your constant prayers, and to those who have shared your prayer request with me! It is SUCH and honor to be able to pray with you. One of my girlfriends today asked for prayer, so we prayed via email. A friend did this for me once, and I hold his email as treasure, till this day. Pray it forward!
Have a wonderful Thursday, and make sure you find time to rest!
Amen
Today is GOOD! I'm feeling close to normal, and eating like a horse..well, a horse that likes meat, and cheese, and sweets. I'm not a huge sweets fan, but this morning, I was craving a McDonalds Bacon, Egg, Cheese biscuit. Their biscuits are just too big though..too much bread. Crawling out of my tunnel vision at the order board, I tried the McGriddle, which surprised me! I honestly thought I was ordering the BEC on an English Muffin..nope, it turned out to be a small pancake, with syrup cooked in somewhere. I don't want to know how it was made, how horrible it is, or where it came from 30 mins before I ordered...All I know is that it hit the spot, and was good!
We (Lee and I) are working on picking a date and location for wedding madness. That's fun! Soon we'll get to do the more fun stuff...like sample food...;)
I suppose today I'd like to share how grateful I am for your constant prayers, and to those who have shared your prayer request with me! It is SUCH and honor to be able to pray with you. One of my girlfriends today asked for prayer, so we prayed via email. A friend did this for me once, and I hold his email as treasure, till this day. Pray it forward!
Have a wonderful Thursday, and make sure you find time to rest!
Amen
Friday, April 16, 2010
Pray the cars away
We've been back in the US for 8 days or so...and it has been a fun week!! We returned from Paris engaged (awesome), and dealing with lots O symptoms (expected). This time around the double vision locked on right away, followed with the regular swallowing problems, then breathing and muscle weakness issues. I've had 5 treatments in the past 8 days, and am almost back to normal. Just walking slow.
This past week, while driving with the double vision (yes, should be a no-no), I realized how powerful prayers are. Not only your prayers, but mine too! The good Lord knows that I'm hard headed, and wont sit still for a week in my apartment, waiting on the double vision to blow over. Nor will I allow others to be taxed with shuttling me around all the time. For the record, Lee does drive me most of the time, when I'm dealing with the vision. ANYWAY! ...when I do get behind the wheel, with tape on my glasses (this helps me focus on using one eye), I say a quick prayer, "Lord, please protect me and all the cars around me. Amen" When my head and heart are lined up and being sincere with this prayer, I tell ya what, the cars are all gone. I can pray the cars away! hehehe
When its time to merge into traffic with one eye closed, the cars are held up at the red light, up the hill. When I need to get off the hwy and merge onto a service street, the cars have opened up nicely. Pray the cars away! Its kinda fun. Can't imagine what Moses felt like, praying the water away.
Anyway, that's been in my head this past week. Praying the cars away, and how powerful prayer really can be. We'll see what goofy saying I have for next week's enjoyment.
This past week, while driving with the double vision (yes, should be a no-no), I realized how powerful prayers are. Not only your prayers, but mine too! The good Lord knows that I'm hard headed, and wont sit still for a week in my apartment, waiting on the double vision to blow over. Nor will I allow others to be taxed with shuttling me around all the time. For the record, Lee does drive me most of the time, when I'm dealing with the vision. ANYWAY! ...when I do get behind the wheel, with tape on my glasses (this helps me focus on using one eye), I say a quick prayer, "Lord, please protect me and all the cars around me. Amen" When my head and heart are lined up and being sincere with this prayer, I tell ya what, the cars are all gone. I can pray the cars away! hehehe
When its time to merge into traffic with one eye closed, the cars are held up at the red light, up the hill. When I need to get off the hwy and merge onto a service street, the cars have opened up nicely. Pray the cars away! Its kinda fun. Can't imagine what Moses felt like, praying the water away.
Anyway, that's been in my head this past week. Praying the cars away, and how powerful prayer really can be. We'll see what goofy saying I have for next week's enjoyment.
Thursday, April 8, 2010
What a week!
Wow, what a week in Paris!! I'm typing to you from the 'blood chair' as I like to call the pheresis chair. We just returned from a week in Paris (yes, France), and saw just about everything! Thank you for soooo many prayers and well wishes. I fully know and trust that our good Lord helped keep the MG symptoms away, for as long as they stayed away. If you've shared my prayer request with others, please also share my humble, humble thank you!!!
We arrived on Friday early, and was symptom free until late Monday. Awesome! Today, back in TX, I'm fully engulfed by MG, but it has all been worth it! Lee and I walked soooo much in Paris, and he even asked me to marry him. (YAY!) With all of this exercise and excitement, the symptoms were expected far sooner. I'm blessed to have so many prayer warriors around me, lifting us up!
Today, I see double, can't swallow well, or speak much. So, I'm a bit frustrated of course. No matter though, I'm joyful on the inside, and know treatments today, tomorrow, and next week, will clear everything up. Thank you God for the beauty of modern medicine, and your brilliant children who I trust every week to make my body work. Aaaamen!
http://sharingbecauseican.blogspot.com/
We arrived on Friday early, and was symptom free until late Monday. Awesome! Today, back in TX, I'm fully engulfed by MG, but it has all been worth it! Lee and I walked soooo much in Paris, and he even asked me to marry him. (YAY!) With all of this exercise and excitement, the symptoms were expected far sooner. I'm blessed to have so many prayer warriors around me, lifting us up!
Today, I see double, can't swallow well, or speak much. So, I'm a bit frustrated of course. No matter though, I'm joyful on the inside, and know treatments today, tomorrow, and next week, will clear everything up. Thank you God for the beauty of modern medicine, and your brilliant children who I trust every week to make my body work. Aaaamen!
http://sharingbecauseican.blogspot.com/
Wednesday, March 31, 2010
Answered prayers
It has been a rough month, but the past few days have truly felt so nice! With 3 treatments per week, over the past 2 weeks, we've caught up to the symptoms again. My vision is stable and face is near 100%. What a blessing! After my last post and reaching out for prayers, its awesome how His grace just washed right over me and gave me calm. Hearing from folks who either read this or received an email about this blog, seriously lifted me up. Letting go of the stress about the disease, allowed my body to relax and fight the good fight! I'm eating like a horse again, and trying to put a few pounds back on. Yep, I just typed that ladies. :)
Thank you all for your prayers and continued support. Please let me know how I can also lift you up! Email/call/post...just let me know.
merci!
Rachel
Feeling good, and now, against all medical advice, Lee and I are taking off to Paris, France tomorrow, to visit with his brother and sister-in-law. We've been planning this trip for a while, and are very excited to take a vacation! The timing of course isn't the best, but when will it ever be? I accept these symptoms will begin flaring up during the trip, and so we'll plan to attack again, next week, when we return. Please pray for safe travels and minimal symptoms. By anticipating them, I'm releasing my stress over controlling the symptoms. I'll out-smart myself yet!
Thank you all for your prayers and continued support. Please let me know how I can also lift you up! Email/call/post...just let me know.
merci!
Rachel
Thursday, March 18, 2010
One month later
Maybe these symptoms are somehow hormonal. Who knows! As much as I love to test, retest, and test again..removing variables as best I know how, this human lab rat is rather tired of the game call MG. Yes, I'm sharing my frustrations because they are real, and it is healthy to share emotions..all of them.
For the past 2 1/2 weeks, its been all symptoms, all the time. I had one day, maybe 2, where my body was asymptomatic. When the throat and mouth slow for more than a few days, the eyes decide to play along too...and not to be shown up, the eyes cross for a week. Ok, eyes win, and in the spirit of springing forward, the eyes are extending themselves beyond the expected 1 week window. (If you're new to my story, once the vision doubles, it remains so for one calendar week)
I've been going slow, not zipping around. I returned to two treatments a week, body wont maintain stretching the duration. I'm sleeping..well, not right now, but you understand. I'm frustrated.
Whats next...We are attempting to use FFP (Fresh Frozen Plasma) in my pheresis treatments now, because other pheresis patients (with MG and not) have experienced extended periods of time between treatments with FFP. The first attempt was this past Tuesday, the second will be tomorrow. I'm going to ask for 3 treatments next week...we'll see if thats possible.
Also exciting, we've been scheduled to see a Dr in Dallas, who has a great deal of focus on MG and runs trials. I want to be in his trial for a drug called Rituxan! There are several cases we've found (and by 'we' I mean my wonderful Lee), where MuSK positive MG patients (thats my type of MG), have experienced remissions periods through Rituxan treatment. This drug is not yet FDA approved for MG, but has been for other diseases. God willing, we WILL contribute to finding a cure for this very, very, very silly disease.
All of this said, I'm very frustrated to have symptoms last consistently over a 2+ week period. My wonderful friends from Denver are coming into town for the weekend, and bless them, they know whats going on, and just want to hang out. Stress lowered there, no need to be a hostess with the mostest. Lee and I are going to Paris (France, not TX) on 4/1, and I'd rather see one everything...not two.
So, if you're reading this, I think I'm going to ask you to add me to your prayer list. Its time to reach out and stir the pot again...Rachel is ready to see straight...now... I can't promise I'll act straight, but I'll do my best.
Humbly yours Lord.
Rachel
For the past 2 1/2 weeks, its been all symptoms, all the time. I had one day, maybe 2, where my body was asymptomatic. When the throat and mouth slow for more than a few days, the eyes decide to play along too...and not to be shown up, the eyes cross for a week. Ok, eyes win, and in the spirit of springing forward, the eyes are extending themselves beyond the expected 1 week window. (If you're new to my story, once the vision doubles, it remains so for one calendar week)
I've been going slow, not zipping around. I returned to two treatments a week, body wont maintain stretching the duration. I'm sleeping..well, not right now, but you understand. I'm frustrated.
Whats next...We are attempting to use FFP (Fresh Frozen Plasma) in my pheresis treatments now, because other pheresis patients (with MG and not) have experienced extended periods of time between treatments with FFP. The first attempt was this past Tuesday, the second will be tomorrow. I'm going to ask for 3 treatments next week...we'll see if thats possible.
Also exciting, we've been scheduled to see a Dr in Dallas, who has a great deal of focus on MG and runs trials. I want to be in his trial for a drug called Rituxan! There are several cases we've found (and by 'we' I mean my wonderful Lee), where MuSK positive MG patients (thats my type of MG), have experienced remissions periods through Rituxan treatment. This drug is not yet FDA approved for MG, but has been for other diseases. God willing, we WILL contribute to finding a cure for this very, very, very silly disease.
All of this said, I'm very frustrated to have symptoms last consistently over a 2+ week period. My wonderful friends from Denver are coming into town for the weekend, and bless them, they know whats going on, and just want to hang out. Stress lowered there, no need to be a hostess with the mostest. Lee and I are going to Paris (France, not TX) on 4/1, and I'd rather see one everything...not two.
So, if you're reading this, I think I'm going to ask you to add me to your prayer list. Its time to reach out and stir the pot again...Rachel is ready to see straight...now... I can't promise I'll act straight, but I'll do my best.
Humbly yours Lord.
Rachel
Wednesday, February 17, 2010
Today is a good day
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.
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.
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
Tuesday, January 26, 2010
Merry-go-round and round and round and round
Cyclical...its all cyclical, right? There was a point in my life where I felt that the same people, the same events, the same mistakes, the same everything...kept happening over, and over again, and I had no control. Today is one of those days. It feels very familiar.
However, amidst the drama in my mind, today I very well know this merry-go-round will be my ride, only if I let that happen...if I participate. The fact that I'm aware of this much, means that I am a willing participant, if one at all, yes? Then today, I knowingly and willing choose to avoid being sucked into the swirling mass of crazy, that can so easily engulf my world.
We all deal with this ...you know it, I know it... Owning the fact that you contribute to this same cycle, is pretty huge. Today, I had a few things trigger me into déjà vu scenarios. Phone calls, catheter discomfort, washing hair with a cup, others' emotions, listening to the same stories, being greeted by familiar energy levels, receiving emails from someone once close...the list goes on. It can bring you down! ...it does me. So what do you do?
You stop. You try to understand why YOU are reacting, and how YOU may be causing or enabling the issue. Maybe the issue only exist in your mind...and if so...why? Maybe YOU need to communicate to someone other than that cute voice in your head that never leads you astray (hahahaha), or maybe YOU need to stop what you're doing and clear your mind. Or maybe YOU need to rest and refocus. Its ok to wear out, and be tired. We are human. Its ok to disengage for a bit, and step off the merry-go-round.
However, amidst the drama in my mind, today I very well know this merry-go-round will be my ride, only if I let that happen...if I participate. The fact that I'm aware of this much, means that I am a willing participant, if one at all, yes? Then today, I knowingly and willing choose to avoid being sucked into the swirling mass of crazy, that can so easily engulf my world.
We all deal with this ...you know it, I know it... Owning the fact that you contribute to this same cycle, is pretty huge. Today, I had a few things trigger me into déjà vu scenarios. Phone calls, catheter discomfort, washing hair with a cup, others' emotions, listening to the same stories, being greeted by familiar energy levels, receiving emails from someone once close...the list goes on. It can bring you down! ...it does me. So what do you do?
You stop. You try to understand why YOU are reacting, and how YOU may be causing or enabling the issue. Maybe the issue only exist in your mind...and if so...why? Maybe YOU need to communicate to someone other than that cute voice in your head that never leads you astray (hahahaha), or maybe YOU need to stop what you're doing and clear your mind. Or maybe YOU need to rest and refocus. Its ok to wear out, and be tired. We are human. Its ok to disengage for a bit, and step off the merry-go-round.
Monday, January 25, 2010
Ode to a Permacath
I posted this to my Facebook page on Friday...it made me laugh!
---
(hahaha...inspired today, while in the waiting room anticipating removal of cath #2)
Oh crazy looking permacath, I never dreamt we'd meet, but now that we have, of course I feel you're rather neat.
Thanks for continued support through this drawn out, bloody mess. As a quirky type of life line, you really are the best.
But please forgive my smile and glee that you will not be around. I'm excited for the weekend, and the chance to sleep face down.
When next we meet, for now a third time, early Monday morn, forgive my 'blah' expression, as I'm feeling really torn.
I know you will do your best again, to remain infection free. If you don’t, you little rascal, I’ll take you over my knee!
---
(hahaha...inspired today, while in the waiting room anticipating removal of cath #2)
Oh crazy looking permacath, I never dreamt we'd meet, but now that we have, of course I feel you're rather neat.
Thanks for continued support through this drawn out, bloody mess. As a quirky type of life line, you really are the best.
But please forgive my smile and glee that you will not be around. I'm excited for the weekend, and the chance to sleep face down.
When next we meet, for now a third time, early Monday morn, forgive my 'blah' expression, as I'm feeling really torn.
I know you will do your best again, to remain infection free. If you don’t, you little rascal, I’ll take you over my knee!
Thursday, January 21, 2010
"May not be fun, but it's gotta be done"
I wish you could hear me singing right now. The title of this blog is based on a song (there were so many) that mom taught us to sing growing up. We sang this song while doing chores or working in the garden. "May not be fun, but its gotta be done, may not be fun, but its gotta be done. Pick those beans, shuck that corn, mop that floor, and it's still not done. Its called Work..its called work." Ok, I'm inserting my own lyrics now, but you get the picture. We would sing in order to distract ourselves, while we worked. Creative distraction for a mother of 3 energetic girls!
In my women's bible study group, we are focusing on the book of Daniel. One of the versus Beth Moore touched on, really spoke to me. John 11:4 - When he heard this, Jesus said, "This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it." Of course I clung to the verse that talked about me (yes, it was written just for me, find your own). As I listened to several of the other versus we covered last night, many had a similar tone, but this one became my distracting song and inspiration.
As much as I like to focus on Myasthenia Gravis and the stupidity of this disease, I sometimes get lost in the details and forget what this is all about. My body is a test lab...I've accepted this and brag about it. My heart is grateful that I can still feel pain, so many others can not. My mind is focused. I continue to want to know more about MG and the stupidity of it all, but through Daniel, I'm reminded that while we struggle, we are also meant to shine. Refine, and shine! "May not be fun, but it's gotta be done...may not be fun, but its gotta be done"
In my women's bible study group, we are focusing on the book of Daniel. One of the versus Beth Moore touched on, really spoke to me. John 11:4 - When he heard this, Jesus said, "This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it." Of course I clung to the verse that talked about me (yes, it was written just for me, find your own). As I listened to several of the other versus we covered last night, many had a similar tone, but this one became my distracting song and inspiration.
As much as I like to focus on Myasthenia Gravis and the stupidity of this disease, I sometimes get lost in the details and forget what this is all about. My body is a test lab...I've accepted this and brag about it. My heart is grateful that I can still feel pain, so many others can not. My mind is focused. I continue to want to know more about MG and the stupidity of it all, but through Daniel, I'm reminded that while we struggle, we are also meant to shine. Refine, and shine! "May not be fun, but it's gotta be done...may not be fun, but its gotta be done"
Tuesday, January 19, 2010
Perma what?
Oh the saga continues, and if nothing else is learned in life, know that nothing is permanent..not even a permacath...
Just met with the Cardiovascular surgeon who Ive come to adore and hug on sight. The fistula is healing, but not likely to return to pre-December status. Who knows why it fizzled?...but it did. We'll watch it, but not with optimism...more curiosity than anything.
I had an 'oil change' early today, and Nephrologists #2 agreed with #1 from last week, that the permacath should be removed and a new one installed. The infection just wont clear and its too risky to maintain this line. Lord knows I do not want to deal with sepsis blood again!
So, our plan is to have Dr. Cardio remove the current permacath this Friday after the Friday pheresis treatment enjoy a cath-holiday (I thought this was a new piece of equipment...nah, just a holiday from a catheter for a short period of time) over the weekend, then go in for installation of a new catheter by Radiologist guided by Xray, on Monday...just in time for my next 'oil change' on Tuesday AM. Hows that for team work! Thank goodness for the Doctors who do grow to know you and and who know each other.
I learned Monday, that an iron study which I was being recommended for and screen for, I failed to qualify for. My kidneys are working too well for the study! :) ...I'll accept this failure...
All this said, life is good. All has been expected, is in good timing, and Dr. Cardio was singing 'Pants on the ground' today....hahahaha
Just met with the Cardiovascular surgeon who Ive come to adore and hug on sight. The fistula is healing, but not likely to return to pre-December status. Who knows why it fizzled?...but it did. We'll watch it, but not with optimism...more curiosity than anything.
I had an 'oil change' early today, and Nephrologists #2 agreed with #1 from last week, that the permacath should be removed and a new one installed. The infection just wont clear and its too risky to maintain this line. Lord knows I do not want to deal with sepsis blood again!
So, our plan is to have Dr. Cardio remove the current permacath this Friday after the Friday pheresis treatment enjoy a cath-holiday (I thought this was a new piece of equipment...nah, just a holiday from a catheter for a short period of time) over the weekend, then go in for installation of a new catheter by Radiologist guided by Xray, on Monday...just in time for my next 'oil change' on Tuesday AM. Hows that for team work! Thank goodness for the Doctors who do grow to know you and and who know each other.
I learned Monday, that an iron study which I was being recommended for and screen for, I failed to qualify for. My kidneys are working too well for the study! :) ...I'll accept this failure...
All this said, life is good. All has been expected, is in good timing, and Dr. Cardio was singing 'Pants on the ground' today....hahahaha
Friday, January 15, 2010
Daniel and the Fistula
This week feels like its been a rough one. Monday began with a fistualgram, that became a fistualgraph, that resulted with a 'thrill' that remains rather quiet. Now, you might read this and have immediately thought, "Rachel is being silly with her nonsense words." They're real..and I'll let you Google them all.
My fistula was created in August, 2009. We (Lee, myself and the Drs.) took great caution and care with this because my anatomy provided small veins and arteries to begin with. With that, we waited to use the fistula until is was just right. It was just right in December...and we elected to perform the first access this month. Over the month's time, the fistula fizzled. Feels a bit like losing a friend.
SO, in an effort to save the rascal, the procedure was scheduled for Monday. Ouch, but a learning experience. Its Friday, the fistual remains quiet, and I'm told the catheter in my chest may need to be removed and replaced. Ouch again...
We're studying Daniel in our small group, and moving through the Daniel's fast as I type. One thing sticks in my mind, about Daniel not wanting to eat from the King's table. He was avoiding the unclean food and the related gluttony, only asking for vegetables. He was humble and simple and wanting only to shine and glorify God.
Moving through this fast, and craving coffee and sweet tea as I do, I'm moved to remember than I can do with less. I can survive a few hunger pains. When I get complacent...I can deal with a little shake up, a little more discomfort, and little less convenience. With God, and we can shine a little brighter.
My fistula was created in August, 2009. We (Lee, myself and the Drs.) took great caution and care with this because my anatomy provided small veins and arteries to begin with. With that, we waited to use the fistula until is was just right. It was just right in December...and we elected to perform the first access this month. Over the month's time, the fistula fizzled. Feels a bit like losing a friend.
SO, in an effort to save the rascal, the procedure was scheduled for Monday. Ouch, but a learning experience. Its Friday, the fistual remains quiet, and I'm told the catheter in my chest may need to be removed and replaced. Ouch again...
We're studying Daniel in our small group, and moving through the Daniel's fast as I type. One thing sticks in my mind, about Daniel not wanting to eat from the King's table. He was avoiding the unclean food and the related gluttony, only asking for vegetables. He was humble and simple and wanting only to shine and glorify God.
Moving through this fast, and craving coffee and sweet tea as I do, I'm moved to remember than I can do with less. I can survive a few hunger pains. When I get complacent...I can deal with a little shake up, a little more discomfort, and little less convenience. With God, and we can shine a little brighter.
Saturday, January 9, 2010
Not Sure
I really dont know if I have a good title for this blog...other than 'not sure'. As I type this though, I think it rather sums up what I'm thinking. I'm not sure.
We learned yesterday, that the fistual created in my arm, last August...which we've been waiting, and waiting, cautiously waiting...to use, may no longer be a viable access point. WTH! The Dr. was ready to go last month, and I was shocked, b/c we'd waited so long. We agreed to hold off 1 more month, to get through the holidays. Well as things have gone, in the last month, something occured that has quieted the 'thrill' of the fistula. Monday, we'll go in for a procedure called a fistulagram..like an angiogram... I dont know how you properly spell that..but the balloon in the vien process. Maybe we can save the dang thing. Everyone worked hard to create it, and by golly we've spent a lot of energy getting ready for it.
Oddly enough, the thought of using it scares me, but if the fistula is not sucessfully used, then the catheter must remain in my chest. In fact the darn catheter is trying to get infected on me. I've been on anitbiotics for the past few weeks, trying to get rid of the...never mind. We'll just say its just healing nicely! ;) Seeing as how I've grown rather attached to this aparatus in my chest, I'll continue to care for it and pray it hangs in there, until something better comes along.
Ok, thats all I've got. Sarah suggested I create a blog, and so I'll try picking this back up. Welcome to 2010.
We learned yesterday, that the fistual created in my arm, last August...which we've been waiting, and waiting, cautiously waiting...to use, may no longer be a viable access point. WTH! The Dr. was ready to go last month, and I was shocked, b/c we'd waited so long. We agreed to hold off 1 more month, to get through the holidays. Well as things have gone, in the last month, something occured that has quieted the 'thrill' of the fistula. Monday, we'll go in for a procedure called a fistulagram..like an angiogram... I dont know how you properly spell that..but the balloon in the vien process. Maybe we can save the dang thing. Everyone worked hard to create it, and by golly we've spent a lot of energy getting ready for it.
Oddly enough, the thought of using it scares me, but if the fistula is not sucessfully used, then the catheter must remain in my chest. In fact the darn catheter is trying to get infected on me. I've been on anitbiotics for the past few weeks, trying to get rid of the...never mind. We'll just say its just healing nicely! ;) Seeing as how I've grown rather attached to this aparatus in my chest, I'll continue to care for it and pray it hangs in there, until something better comes along.
Ok, thats all I've got. Sarah suggested I create a blog, and so I'll try picking this back up. Welcome to 2010.
Subscribe to:
Posts (Atom)
