Hey...I'm Rachel...nice to meet ya! Oh? We've met before...OH YES!! I'M SORRRRRY, please forgive me. We have met! My mind..it leaves me sometimes..but not today.
Why today is my mind with me? I suppose its because I'm being mindful. Full of mind? Full of my mind? Not likely...hehe...ok, this is my own weak humor.
Today is a special day for me, as it marks 6 months since I last required Plasmapheresis. If you've been reading with me for a bit, you know what I'm talking about. If you're new to this reality check, let me give you the short version:
In 2008, I began to show symptoms for a neuromuscular disorder known as Myasthenia Gravis (MG). This disease can render your muscles weak and sometimes useless. Typically MG impacts those muscles in your bulbar region. This means diaphragm and up. "Head, shoulders, sometimes knees, sometimes toes". Each person with MG has a different experience. Mine resulted in several hospital stays, many variations of medications, meeting doctors and nurses all over the state of Texas (dont mess with Texas!), and reaching a point where being able to breath on my own, was a chore.
I consider MG to be a ninja disease. By this I mean you have NO idea its there, and then *BAM* you're sucking wind, having a hard time walking, arms can't wash your hair, your eyes can't maintain a straight gaze, your diaphram cant expand, your jaw can't chew and your throat sure as heck wont manage that large piece of steak you just cut. You went from being super active to having a feeding tube jammed down your nose (NOT fun!) and fall warning socks slipped onto your feet.
What causes MG? No one knows, but when this autoimmune disease develops, signals from your brain, can not reach your muscles. The signal is blocked! For the science nerds, the signal is blocked by antibodies at the neuromuscular juncture, preventing acetylcholine recptors on the postsynaptic gap side of the river. That said, sometimes the problem lies with the cattle herding dogs, on the postsynapitc side of the equation, in that the antibodies are preventing the MuSK protien from hearding the other little protiens to their pens. (pretty sure I just failed my science test)
Bored yet? SO - MG, Ninja disease, doesn't play nice, doesn't really go away, medicine can help, OR ...if you're stubborn like me... medicine does not always help, but modern science, willing Doctors, and prayer warriors do!
Back to my 6 month mark. Since this journey began in 2008, my body has required the blood be cleaned up weekly, sometimes every other day. I would sit next to a large machine that would basically wash my blood. Plasmapheresis involves the blood flowing into a large spinning machine that separates your red blood cells from the plasma. Plasma goes to the trash because the antibodies live here! Red blood cells are paired up with a plasma replacement, and returned to your body. All of this took place through a permacath (tubes) installed in my chest wall. Super sexy. Not.
Today, it has offically been SIX WHOLE MONTHS since I've required a plasmapheresis treatment! Why? Doctors who my husband Lee and I have come to know and trust, were willing to try something different with me. We tried an infusion therapy that is new for MG. It works!! God sent angles our way, for sure!
The MG isn't gone, its just taking a nap. I'm ok with this! Right now, I'm back to my healthy weight, have lost the bloat associated from a year of Prednisone, and am slowly reminding my muscles and joints what it means to exercise.
If you've read this far, you ARE a champ. Thanks for hanging with me. The month of June is considered Myashtenia Gravis Awareness Month. I do hope that in reading this, you're now more aware that this disease exisist.
Be blessed!
Thursday, June 14, 2012
Tuesday, April 3, 2012
night night
Its really late and well past my bedtime, and yet I find myself logging into Blogger, so write you a note. All is well here, and remains calm and stable. We continue to meet with Drs. when scheduled, and anticipate next test or appointments.
In addition to this, we're just living life. Its really odd to me, to be so steady now with the MG and MS that I tend to forget sometimes, that these two hang out with me daily. It has happened before, that I worry I will forget. My fear...as soon as I forget what its like to live with the symptoms, they'll quickly rejoin me. Not likely, but a quiet fear we all carry, with regards to so many different things in our life. Its the one or two things that sit quietly in the dark corner of our brains, just waiting for you to ignore them. If you pay attention to 'it' on a steady frequency, all remains calm. Turn your back for a moment, and 'it' sneaks out of the corner and onto the main stage. "Tah dah"
While feeling so much better, I've also overwhelmed myself with life. Feeling a bit over committed and stressed about missing deadlines or letting people down. So, what do you do when this happens? Well, I tend to wall up and protect myself by disengaging. Creating quiet. Release control..again. This crazy control thing is what landed me here to begin with.
Ok, so maybe this was more of a late night mind dump. Simply trying to remember to stand up and enjoy each aspect of life, with or without symptoms, and to relax about it at the same time. Eh well...sleep will help. G'Night
In addition to this, we're just living life. Its really odd to me, to be so steady now with the MG and MS that I tend to forget sometimes, that these two hang out with me daily. It has happened before, that I worry I will forget. My fear...as soon as I forget what its like to live with the symptoms, they'll quickly rejoin me. Not likely, but a quiet fear we all carry, with regards to so many different things in our life. Its the one or two things that sit quietly in the dark corner of our brains, just waiting for you to ignore them. If you pay attention to 'it' on a steady frequency, all remains calm. Turn your back for a moment, and 'it' sneaks out of the corner and onto the main stage. "Tah dah"
While feeling so much better, I've also overwhelmed myself with life. Feeling a bit over committed and stressed about missing deadlines or letting people down. So, what do you do when this happens? Well, I tend to wall up and protect myself by disengaging. Creating quiet. Release control..again. This crazy control thing is what landed me here to begin with.
Ok, so maybe this was more of a late night mind dump. Simply trying to remember to stand up and enjoy each aspect of life, with or without symptoms, and to relax about it at the same time. Eh well...sleep will help. G'Night
Saturday, March 17, 2012
...because I can
Life is so beautiful! I'm sitting at the table, the porch (some call it a patio) door is wide open, there is cool morning air today, and my coffee is tasty! I'm avoiding chores by stalking you on Facebook right now. I'm vicariously taking part in your races, your parades, your frustrations, your vacations, your deep thoughts, your family milestones. Is that scary? Ah, that's what social media is all about. You post it, tag it, share it, like it, and you're permitting your friends to view a bit of your world. Thank you! Thank you for being a friend, in real life or in the social media/arms length away world. Thank you for sharing!
This morning, I was checking out the donations made to the MS150 ride that my husband, sister, and 2 very dear friends are training for, which will take place next month. The bike ride is called the "BP MS150" because they will ride over 150 miles from Houston to Austin, in 2 days, to help raise awareness and monies for the fight against Multiple Sclerosis. What an amazing adventure! What an awesome journey, both physically and emotionally! What a crazy thing to do!!! I don't care to drive 150 miles, let a lone pedal that on a bike?! My guess is that they don't either, but this is exactly what they will be doing. Why? Because they care. Because they want to share their world with others. Because they choose to help make a difference. They are riding because they can! What a motivation!!
Today the sun is shining, the birds are chirping, the air is cool, the coffee taste good, and the heart is full. Today is a day that I choose to look up at the world, rather than at my feet, while I walk. Today, I release fears that sit quietly inside my head, as they are not mine to control. Today, I choose to smile rather than sit emotionless. Today, I remember to thank God for the air in my lungs. Today, I choose to share and celebrate life, because I can. Thanks for sharing yours too!
This morning, I was checking out the donations made to the MS150 ride that my husband, sister, and 2 very dear friends are training for, which will take place next month. The bike ride is called the "BP MS150" because they will ride over 150 miles from Houston to Austin, in 2 days, to help raise awareness and monies for the fight against Multiple Sclerosis. What an amazing adventure! What an awesome journey, both physically and emotionally! What a crazy thing to do!!! I don't care to drive 150 miles, let a lone pedal that on a bike?! My guess is that they don't either, but this is exactly what they will be doing. Why? Because they care. Because they want to share their world with others. Because they choose to help make a difference. They are riding because they can! What a motivation!!
Today the sun is shining, the birds are chirping, the air is cool, the coffee taste good, and the heart is full. Today is a day that I choose to look up at the world, rather than at my feet, while I walk. Today, I release fears that sit quietly inside my head, as they are not mine to control. Today, I choose to smile rather than sit emotionless. Today, I remember to thank God for the air in my lungs. Today, I choose to share and celebrate life, because I can. Thanks for sharing yours too!
Tuesday, March 13, 2012
Buh-Bye
Last Wednesday, I parted ways with a dear acquaintance. We'd known each other for quite sometime, and had been through 'some stuff' together. However, like many relationships, it was time for this one to end. Each party has to support the other, and where I was well supported, in turn, I did not reciprocate and was neglectful.
I really did want to maintain what we had, but failed to truly do my part. Yes, I could have done more and probably should have, yet knowing our deep connection was soon to be broken, the distance I created was more intentional, than not. Likely it was denial, and I was protecting myself from the anxiety about going our separate ways.
Catheter #5...I thank you for being such a key part of my life, much as those before you. In my mind, you and I parted on very good terms, and it truly is with mixed emotion, that I say "buh-bye"
Yep, alls still good here! Its been 3 months since the last pheresis. Amen!
I really did want to maintain what we had, but failed to truly do my part. Yes, I could have done more and probably should have, yet knowing our deep connection was soon to be broken, the distance I created was more intentional, than not. Likely it was denial, and I was protecting myself from the anxiety about going our separate ways.
Catheter #5...I thank you for being such a key part of my life, much as those before you. In my mind, you and I parted on very good terms, and it truly is with mixed emotion, that I say "buh-bye"
Yep, alls still good here! Its been 3 months since the last pheresis. Amen!
Tuesday, February 21, 2012
Straight Talk - Prednisone
Today, I could feel my face!! For the first time in a while, I woke up able to feel my face again. Not in the sense that you put your hand to your face, and it feels smooth, or bumpy, or cold, or smiley. Feel my face in the sense that it did not feel numb-ish from the inside. I could smile and feel my cheeks and the muscles that help make that happen. It didn't feel like a Dentist loaded me up with that lovely 'stuff' that dulls the hurt. I could feel my face! Now, as I type, its late in the day, and the sensation has diminished. Baby steps!
We continue to slowly decrease the Prednisone and with that, I suppose the side effects will slowly go away too. All I've heard people say is that the side effects from this medication (long term use), is 'just horrible'. Then I ask, 'what does that mean' and often do not get a clear answer. So, I'm here to share.
Your joints start to hurt. I brace myself at times, when sitting. No, you re not getting old and falling apart..well..not exactly. You're not expediting the aging process, but your body *is* expediting the joint degradation. Gotta keep exercising!
My appetite is great..and so is my waistline. NO, that's not a cry for help or a woe is me. Its more like a 'Whoooah' for me!
My vision gets blurry. Aside from any allergens that may be blowing through the area, the vision field gets blurry at times and you have to stop and blink, blink, blink or I even try the eye drops. Sometimes it helps, but most of the time, ya just deal with the change.
Your skin gets a bit aggravated too. What does that mean? I mean, there are little bumps all over that you would liken to dry skin or maybe hives or shingles...it looks that way. I have a lovely break out on my face, and it acts nothing like the silly 'zits' we all grew up with. They're just annoying and ugly.
Ok, that's my quick tutorial on the side effects of Prednisone. Those that I have experienced! Don't get me wrong, these are necessary hurdles and very minimal, when compared to the alternatives patients are often faced with.
Today marks 10-weeks with out pheresis, 11-weeks since the last infusion, let's call it 12-weeks since the symptoms were present, and this morning I could feel my face!
We continue to slowly decrease the Prednisone and with that, I suppose the side effects will slowly go away too. All I've heard people say is that the side effects from this medication (long term use), is 'just horrible'. Then I ask, 'what does that mean' and often do not get a clear answer. So, I'm here to share.
Your joints start to hurt. I brace myself at times, when sitting. No, you re not getting old and falling apart..well..not exactly. You're not expediting the aging process, but your body *is* expediting the joint degradation. Gotta keep exercising!
My appetite is great..and so is my waistline. NO, that's not a cry for help or a woe is me. Its more like a 'Whoooah' for me!
My vision gets blurry. Aside from any allergens that may be blowing through the area, the vision field gets blurry at times and you have to stop and blink, blink, blink or I even try the eye drops. Sometimes it helps, but most of the time, ya just deal with the change.
Your skin gets a bit aggravated too. What does that mean? I mean, there are little bumps all over that you would liken to dry skin or maybe hives or shingles...it looks that way. I have a lovely break out on my face, and it acts nothing like the silly 'zits' we all grew up with. They're just annoying and ugly.
Ok, that's my quick tutorial on the side effects of Prednisone. Those that I have experienced! Don't get me wrong, these are necessary hurdles and very minimal, when compared to the alternatives patients are often faced with.
Today marks 10-weeks with out pheresis, 11-weeks since the last infusion, let's call it 12-weeks since the symptoms were present, and this morning I could feel my face!
Subscribe to:
Posts (Atom)
